tag:blogger.com,1999:blog-57705093286616427202024-03-05T12:34:33.169-08:00Bash Battles ALLTerrahttp://www.blogger.com/profile/14631528262963150914noreply@blogger.comBlogger39125tag:blogger.com,1999:blog-5770509328661642720.post-6703970813332474232018-11-08T21:03:00.000-08:002018-11-08T22:27:19.492-08:00Checking In<div style="border-image: none;">
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgIqbOTEG0LuQ0Oi2lzCYOoDjb3QeK7e5_A8__SIkEgKbjU2EiIzyXlv92H0ar6MikZEByar7ZII6BNfnf1tvzCNNtPx9yECOU_XKXPmB3y_Gvx30zVbQ70vbT78-kTd4fYN7-oB0hP5M4/s1600/_DSC3903.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1143" data-original-width="1600" height="142" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgIqbOTEG0LuQ0Oi2lzCYOoDjb3QeK7e5_A8__SIkEgKbjU2EiIzyXlv92H0ar6MikZEByar7ZII6BNfnf1tvzCNNtPx9yECOU_XKXPmB3y_Gvx30zVbQ70vbT78-kTd4fYN7-oB0hP5M4/s200/_DSC3903.jpg" width="200" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEpCZmT1gVLN3OajoAmPmcwPMGWw0i0XtkBDtXg-Q5ouy7ZkfWcuyhnTnDbcWj13sdQPdDxk0U1xcYSMh5jHAdggvnW1zv4nNkC0KDK2-AMB4oez08MqkyW5aJNOcteGsbCQkMeMCXMi8/s1600/IMG_4741.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEpCZmT1gVLN3OajoAmPmcwPMGWw0i0XtkBDtXg-Q5ouy7ZkfWcuyhnTnDbcWj13sdQPdDxk0U1xcYSMh5jHAdggvnW1zv4nNkC0KDK2-AMB4oez08MqkyW5aJNOcteGsbCQkMeMCXMi8/s200/IMG_4741.JPG" width="200" /></a>Hey all, just a quick lil update. Bash has a follow up appointment tomorrow. The doctors are going to sedate him and then take blood work and a bone marrow aspirate from his hip bone which they will draw his <a href="https://www.sciencedirect.com/topics/medicine-and-dentistry/chimera-genetics">chimerism</a> from. It will show us what his blood cells are doing down at the core. I'm terrified. This is the longest he has ever waited to have blood work done (Last was Sept 14th when his last boost was!) and my mind is racing a million miles a minute. I may look calm and collected on the outside but inside I am falling apart. Its hard to be positive all the time and my mind has wandered to a few dark places and as such I have literally been avoiding writing or talking much about it. </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhS5eLSPI91ChxfwmV7qAn7cHqi5d3s87eyr3yhm0eDcCpTEBFgjdxpo4u1x3Znpht4AAaYpPWd9HHWkabZRrEXDRPm0VFbGLMJxCqjEo4Qe7WYFEg334aW9HFaXUXRjvstqXUfcE7CNTU/s1600/IMG_4750.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhS5eLSPI91ChxfwmV7qAn7cHqi5d3s87eyr3yhm0eDcCpTEBFgjdxpo4u1x3Znpht4AAaYpPWd9HHWkabZRrEXDRPm0VFbGLMJxCqjEo4Qe7WYFEg334aW9HFaXUXRjvstqXUfcE7CNTU/s200/IMG_4750.JPG" width="150" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjWOp1gNqIN_5oBoq6ahFel36vFXKzNizIb8yFlJ7hyXdiDBcqLnqYpdQUuHlIAXQyx1AIT_F8oBChMJ3TaTeLTJVItexDEYHxYa5cw292rI7sb8vnYKFnyK4hrmFajpBria8aMXw1f538/s1600/_DSC4180.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1600" data-original-width="1143" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjWOp1gNqIN_5oBoq6ahFel36vFXKzNizIb8yFlJ7hyXdiDBcqLnqYpdQUuHlIAXQyx1AIT_F8oBChMJ3TaTeLTJVItexDEYHxYa5cw292rI7sb8vnYKFnyK4hrmFajpBria8aMXw1f538/s200/_DSC4180.jpg" width="142" /></a>The last few weeks have been a bit rough. Bash has had a rash on his face for the past three months or so which we finally got into a dermatologist for. They diagnosed the rash as peri orbital dermatitis. We have a cream to put on his face twice a day and it has mostly cleared up. On top of this he has been fighting off a cold for two weeks and is extra clingy. Before his cold started he was complaining his shins hurt and would rub them and say ouchie. This has completely freaked me out. When you're a cancer parent your mind always skips to the worst possible outcome. A bump or bruise, a cough, a complaint of aches, it all brings me careening back to that fateful day of diagnosis. My life will always be this way now, I will always have my back up and my radar on. The second I feel comfortable and drop my guard is when I know it will try to creep back in. Any other parent would say he has growing pains, or that he must have bumped his knee at daycare and it will heal, and that cough is just a cold and it will pass. I'm hyper aware of everything and it super sucks.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMnUotD75Iw_Vylpvmj2JjCBMbCu2xK6g-IYwYvXZQufY_YYtT-JMAUkEccj5tDFJAXYfSTNt_4NpQiO6NRwocPQn_-F6DAgNHWuTrAlKFKiIVNlCWC7BFehsZcWHfCH3MzyAOHrCtYHE/s1600/IMG_4827.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMnUotD75Iw_Vylpvmj2JjCBMbCu2xK6g-IYwYvXZQufY_YYtT-JMAUkEccj5tDFJAXYfSTNt_4NpQiO6NRwocPQn_-F6DAgNHWuTrAlKFKiIVNlCWC7BFehsZcWHfCH3MzyAOHrCtYHE/s200/IMG_4827.JPG" width="150" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1F0iKGM81MbYfEXUNw1pKvftaHsJOBN1XL8Efw-Ufsv893LYlyLIJBwtmi3unXPvYfCe98_i_9QrXSsyxzcIJhU41Z7_sGWqCiFxfLG5EMpNES5V4UMoMkXMMVVHTwVH3C3HVWi4ngCg/s1600/IMG_4789.JPEG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1F0iKGM81MbYfEXUNw1pKvftaHsJOBN1XL8Efw-Ufsv893LYlyLIJBwtmi3unXPvYfCe98_i_9QrXSsyxzcIJhU41Z7_sGWqCiFxfLG5EMpNES5V4UMoMkXMMVVHTwVH3C3HVWi4ngCg/s200/IMG_4789.JPEG" width="150" /></a>I don't want to leave on a negative note so I'll breeze through a summary of our positives for the past few months. We ran in the Believe in the Gold run for childhood cancer awareness, and by run I mean mostly walked ha ha. We had a yearly hematology appointment for the blood clot in Bash's leg where they gave the all clear for another year - no changes, yay! We went to Red Deer for Thanksgiving and Bash got to play with all his cousins and had a blast. We had a fall family photo sesh where we got some awesome pics taken - stay tuned for Xmas cards! Nathan's parents and sister came out to Calgary and we all participated in Light the Night, a walk to raise awareness for blood cancers - we decked out Bash's chariot with lights and turned it into a spaceship, super cool! And of course Halloween! Bash dressed up as a Viking riding on a dragon - he even picked it out!</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj8x9k5d1Iw92M0ONKJQ3kQSduCzlyh3tlcAXRphL0ifzO8YT8vb8C4TfSchfiLo-evyehddVe_i5_5vYk458HvEyFeBxu0VjJdbOLsWIXNJD92fErxRUBFDs2qlSw2CNJt5HdunCgUsYk/s1600/IMG_4774.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj8x9k5d1Iw92M0ONKJQ3kQSduCzlyh3tlcAXRphL0ifzO8YT8vb8C4TfSchfiLo-evyehddVe_i5_5vYk458HvEyFeBxu0VjJdbOLsWIXNJD92fErxRUBFDs2qlSw2CNJt5HdunCgUsYk/s320/IMG_4774.JPG" width="320" /></a></div>
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On that note please send all your positive thoughts and well wishes our way for tomorrow and for the next coming weeks when we will get those chimerism results. Love to you all and thanks for reading my rambles!</div>
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Terrahttp://www.blogger.com/profile/14631528262963150914noreply@blogger.com3tag:blogger.com,1999:blog-5770509328661642720.post-12569928367455472042018-08-26T21:55:00.000-07:002018-08-26T21:55:55.573-07:00Summer Lovin<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhY7ursMZwMHjd8voCtVvYvoXscQSbW69YTJOptrdRIqDmmy54kvGMf2S9gd4MYIIQsLuHWPBJxlp-9WucNJvUGbuXIOay4LJNwjrPFeKvCUZW6HSKn9cHJYr5ltaV_SOUy1SHJwUAsgTg/s1600/IMG_4020.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhY7ursMZwMHjd8voCtVvYvoXscQSbW69YTJOptrdRIqDmmy54kvGMf2S9gd4MYIIQsLuHWPBJxlp-9WucNJvUGbuXIOay4LJNwjrPFeKvCUZW6HSKn9cHJYr5ltaV_SOUy1SHJwUAsgTg/s200/IMG_4020.JPG" width="150" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjmplxzmpe3pae-l2ZmBSqUvoY2_ZV4bSZtCPpsCP09koXng6kLNONhczMShqSc1-xxvnOVR1IW0V5TLU-p9Hn2zwyPCwaYFYRPhirb2tPuVqb_rjaeuRQz-xaptvzMursrMEXy4D_gWsQ/s1600/4992401952_IMG_3091.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1067" data-original-width="1600" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjmplxzmpe3pae-l2ZmBSqUvoY2_ZV4bSZtCPpsCP09koXng6kLNONhczMShqSc1-xxvnOVR1IW0V5TLU-p9Hn2zwyPCwaYFYRPhirb2tPuVqb_rjaeuRQz-xaptvzMursrMEXy4D_gWsQ/s320/4992401952_IMG_3091.JPG" width="320" /></a>What a crazy summer it's been! Time has flown by. Hard to believe it's almost over! I feel like we did so much yet nothing at all. With all the smoke from the wildfires there have been some days we had to stay inside, which was hard as Sebastian loves to be outdoors. Our usual bike rides have been delayed or cut short as we have all been bothered by the smokiness. Bash got his first shiner, had a run in with some lawn furniture, not even a good story haha. On the July long weekend we had a family reunion in Loreburn Saskatchewan on Nathan's grandparents farm. Bash is such a great little traveller, we only had to stop twice! He was up late almost every night and we threw him right off his normal schedule. We were back and forth between Saskatoon and Loreburn and he was such a trooper! It was so good to see him interacting with his great grandparents and playing peek-a-boo with his 98 year old great grandfather! We got to see so many family and friends that we hadn't seen in over a year, some people who had never even met Sebastian! We also got to meet our new niece Nova, the sweetest little girl who Bash loves! We spent the week visiting and getting to sleep in -thanks grandparents and auntie! Then we had another fun weekend at the annual ball tourney which last year was the weekend the fundraiser was held for Bash. We had a giant cake to celebrate Sebastian's one-year 're-birthday' and we all had a blast!<br />
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Bash had his 4th round of re-vaccinations as his bone marrow transplant wiped out his previous vaccinations, so he is essentially starting from scratch. Bash then caught a stomach bug and even though I was super diligent with my OCD cleaning, I caught it too, uhg. We ended up renting a carpet cleaner once we were feeling better because there was literally puke everywhere! Then our day home went on vacation and Nathan's dad came to stay as our live-in nanny for a couple days - Bash was over the moon to have 'baha' (as he calls him) stay with us and soaked up every minute. We also had family from Red Deer meet us at the zoo one day and Bash got to play with some of his cousins. Bash also had a dentist appointment where he had his teeth cleaned for the first time - he wasn't super thrilled with the cleaning bit but was a champ and did awesomely! He got a clean bill of health, no cavities! One side effect of chemo the dentist reminded me is that his permanent teeth may never come in or be delayed so we need to take extra care of his baby teeth.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgY5z3LkWyWT3VWrB8gKiX4uDnWzCjOFcG8WIkdDLOpmG6lQJqxTuP-Akngp8v5WCMwx7X-as21saEDPkbbShwCkYVeZBnSdzUS4G252dIlZArHwGl9zZNvlx0NQRD3p5VzKKGty5cfCYU/s1600/IMG_8152.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1199" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgY5z3LkWyWT3VWrB8gKiX4uDnWzCjOFcG8WIkdDLOpmG6lQJqxTuP-Akngp8v5WCMwx7X-as21saEDPkbbShwCkYVeZBnSdzUS4G252dIlZArHwGl9zZNvlx0NQRD3p5VzKKGty5cfCYU/s200/IMG_8152.jpg" width="149" /></a>To top off our super fun summer, I have been sitting on some pretty exciting news, been so busy, and just have not had the time or been able to write about it. I'm totally afraid to jinx it, afraid to let my guard down in the slightest. Anyway, let's not keep you waiting any longer. Sebastian's latest chimerism results came back July 18th as stable!!! His myeloid cells were 90%, up from 84%, T-cells 96% up from 93%, and B-cells 56% up from 55%. It's not a lot, it's a small increase, but we are elated all the same - even though we haven't shown it. It's been very hard for me to process everything and show my emotions, I never want to drop my guard down. Sebastian's doctor even seemed reserved and our primary nurse had to explain to us that a big smile like that on his face is the best thing you can get!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDrYb9XoMD6TETD45XZBpYsav0ZYEYjC_CjdLn-U7GS5Fjhn8VJB7A4rWJck03i6hnbv6vpC_YrrbIjkgP_NQqiGz1gQvDR-4ush7V6Rx4aKS6KTnht4c2gDZ_DuH3YcOd1ZJrvlDpeXg/s1600/IMG_3784.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDrYb9XoMD6TETD45XZBpYsav0ZYEYjC_CjdLn-U7GS5Fjhn8VJB7A4rWJck03i6hnbv6vpC_YrrbIjkgP_NQqiGz1gQvDR-4ush7V6Rx4aKS6KTnht4c2gDZ_DuH3YcOd1ZJrvlDpeXg/s200/IMG_3784.JPG" width="150" /></a>We went ahead with a 5th boost on July 27th to help those numbers to keep increasing. It was the first boost we were not admitted for. Everything was done in a private room in the clinic. We arrived early in the morning, Bash had two IV's started, thankfully they were both a breeze and he was not poked multiple times as has happened in the past. He had some pre-meds and some hydration and then the boost was given around 1pm. The boost was an increased amount from the previous ones, and yet still fit into a 10ml syringe and was given in under two minutes. He then had post hydration for a few hours to flush any preservatives from the product out of his system as they can be hard on the kidneys. We had a visit from the music therapist which Bash loved. We were finally sent home around 6pm.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEicqdTLigJ7f0fodBmgKdTi5mmX5yi2TYXMzVL94H2Il5ap9EcR98gFUTbjmrxH2KTvJ-xYUEzBz9giZ_C4mDQe3kWG4c3W_m5OlY7FlKVBrg8jeg8s4IBz2ZY-eebN_1k4RBuuZwWyuy4/s1600/IMG_4325.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEicqdTLigJ7f0fodBmgKdTi5mmX5yi2TYXMzVL94H2Il5ap9EcR98gFUTbjmrxH2KTvJ-xYUEzBz9giZ_C4mDQe3kWG4c3W_m5OlY7FlKVBrg8jeg8s4IBz2ZY-eebN_1k4RBuuZwWyuy4/s200/IMG_4325.JPG" width="150" /></a>Bash had blood-work drawn on Aug 17th and chimerism results take approximately 2-3 weeks. If his numbers remain stable and/or increase we may not need to do his 6th boost and will just wait and see. If his numbers have dropped then our doctors will most likely do a bone marrow aspirate to check his numbers at the very base, and then a 6th boost, the last one Bash will get. We should get results this week sometime. Thanks for all the love and as always please keep us in your thoughts and prayers.<br />
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Terrahttp://www.blogger.com/profile/14631528262963150914noreply@blogger.com1tag:blogger.com,1999:blog-5770509328661642720.post-32220927193800893742018-06-27T23:30:00.001-07:002018-06-28T06:43:50.368-07:00Fourth Boost<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXtHCwAPt5BM8rfBQ6ZBsPUygLrMxy-fTJqo0ssEfXC72tToz8FrDzozkf9wJ1JBS2g-QeUjYtrMplgLuH-dvNN4QNYY6o3bzpb6YJO18_6u3TH3xApATlyxUKOq3e8n43-2FpaJPMCp4/s1600/IMG_3664.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1080" data-original-width="1080" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXtHCwAPt5BM8rfBQ6ZBsPUygLrMxy-fTJqo0ssEfXC72tToz8FrDzozkf9wJ1JBS2g-QeUjYtrMplgLuH-dvNN4QNYY6o3bzpb6YJO18_6u3TH3xApATlyxUKOq3e8n43-2FpaJPMCp4/s200/IMG_3664.JPG" width="200" /></a>I have been really putting off writing this post. It has been a hard one to sit down and write as it seems we are yet again coming to a crossroads. Sebastian had a fourth donor boost on June 14th as his chimerism results showed his B-Cells are still dropping. They now sit at 55% donor which means his own cells are at almost half. Sebastian's counts are: Myeloid cells - 84%, stable from the last chimerism, T-cells - 93%, down from 97%, and B-cells 55%, down from 61%. When I heard the news it felt quite devastating. I think Nate and I thought the third boost would do the trick and we could wash our hands of this. I had all sorts of thoughts going through my head, the most worrisome, that his bone marrow transplant is failing.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2WCza1ayzkeE5_6TYQYDZ9-dat8pOIqJvpvrs2JRMymbzG8EYXFRAtMxkmhGx4TkaawE8gun6e0o_6FKRYKPMbEFg6AfPIcPNF2S2UVNBVEy6TLQChtvM7wyNqXnS-sfiyOkFRvM9DI8/s1600/IMG_3663.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1080" data-original-width="1080" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2WCza1ayzkeE5_6TYQYDZ9-dat8pOIqJvpvrs2JRMymbzG8EYXFRAtMxkmhGx4TkaawE8gun6e0o_6FKRYKPMbEFg6AfPIcPNF2S2UVNBVEy6TLQChtvM7wyNqXnS-sfiyOkFRvM9DI8/s200/IMG_3663.JPG" width="200" /></a>We quickly scheduled a family meeting with our Oncologist to go over results and decide on a plan. Our team reassured us that Bash's transplant is not currently failing. His other blood counts are staying strong and if his cancer were present his white blood cell count would be elevated and his platelets would be low. Both those counts are normal and no cancer cells have been seen. Our team also said that some transplant patients live with a mixed chimerism and that this could be his normal. They did not want to waste any time though as we have enough donor cells available to boost him. He was scheduled two days later on June 14th for his fourth donor boost which was a strait DLI (<a href="https://www.anthonynolan.org/patients-and-families/recovery-first-year/having-donor-lymphocyte-infusion-dli">Donor Lymphocyte Infusion</a>) and 10x the amount of his third boost in hopes again of causing some <a href="https://my.clevelandclinic.org/health/diseases/10255-graft-vs-host-disease-an-overview-in-bone-marrow-transplant">graft vs host disease</a> which in turn would give us the desired <a href="https://en.wikipedia.org/wiki/Graft-versus-tumor_effect">graft vs tumor effect</a>.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwKimD2DyA0PPGIxoCjYiemtHD6Ik5oxfefqojz3W22SzaKgzlybR98BMXD5vJqDsCaIlTq0tZiDmQft_RnIZ7wr8rOJHLOPdcSta3ikkw0Xt8tuHz49OkFcEf4aOz0WI_jT3vM7Po8r4/s1600/5233359344_IMG_2894.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1067" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwKimD2DyA0PPGIxoCjYiemtHD6Ik5oxfefqojz3W22SzaKgzlybR98BMXD5vJqDsCaIlTq0tZiDmQft_RnIZ7wr8rOJHLOPdcSta3ikkw0Xt8tuHz49OkFcEf4aOz0WI_jT3vM7Po8r4/s200/5233359344_IMG_2894.JPG" width="133" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzMDKdrA_wnWOUXNe6oUriH7JAIe7hoDkYj67HRai-p0yh_BTaLtrW6FGdfMDj0OHwbF70jDGG9p7xOSsO1mxQuwUaPl4-M4OBW_SHfnvqsln25IinRrJpqmk4Q9svHcAVycuXnEIkfsQ/s1600/5233359344_IMG_2900.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1067" data-original-width="1600" height="133" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzMDKdrA_wnWOUXNe6oUriH7JAIe7hoDkYj67HRai-p0yh_BTaLtrW6FGdfMDj0OHwbF70jDGG9p7xOSsO1mxQuwUaPl4-M4OBW_SHfnvqsln25IinRrJpqmk4Q9svHcAVycuXnEIkfsQ/s200/5233359344_IMG_2900.JPG" width="200" /></a>Our team did go over what our options will be if this fourth boost doesn't increase his donor cells. We have enough cells still to do at least two more boosts, which we will definitely do if needed. Bash is almost at a year post transplant which is amazing, and a good sign that he has done well so far. The benchmark we want to hit is the two year post transplant though as studies show after two years the chance of relapse is much less - the farther from transplant you get the better the odds. After this next boost we will do his chimerism test (scheduled for July 10th) and his results should be back in one weeks time as they will put a rush on them. If his counts are still dropping Bash will be scheduled for a bone marrow aspirate to check for cancer cells and to get a better chimerism result from the source. Depending on those results we will then be looking at either a second bone marrow transplant from a different/new donor, or we wait and see if his cancer returns, and if so he would need to be treated with chemotherapy again to get his cancer into remission and then a second bone marrow transplant with a different/new donor. Both are extremely risky and neither are options we want to even think about let alone choose.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQnwvqEN51g7SLqdy-f-H3ZzTukzaPu97g6Bnfjjj2ASiIe0j0TgS_attzfq1h5N4x7wMENXtLQMFghAghRJjSXWSihqUO-gSVXISXXE223yon4Mz2BuWS_3_yjG_i8Bufh-uYxPQZiZc/s1600/IMG_3722.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1600" data-original-width="1067" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQnwvqEN51g7SLqdy-f-H3ZzTukzaPu97g6Bnfjjj2ASiIe0j0TgS_attzfq1h5N4x7wMENXtLQMFghAghRJjSXWSihqUO-gSVXISXXE223yon4Mz2BuWS_3_yjG_i8Bufh-uYxPQZiZc/s200/IMG_3722.JPG" width="133" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhyK4Xg0cm9VWlltM_QH2XMq3xBqWw3n4M_zhEYlQbZqhaO-oQBzG-fmvhU7VXPoVfiy2o34YN4nRUZjowVGbNzgD5oF0s-x765xri9f0A0sRAqEvJkfJupEEXwX8LlI2ic2TFogbaG4fs/s1600/tQu3Nj7TRUOarj3YNad6LQ_thumb_1668.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="734" data-original-width="1069" height="136" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhyK4Xg0cm9VWlltM_QH2XMq3xBqWw3n4M_zhEYlQbZqhaO-oQBzG-fmvhU7VXPoVfiy2o34YN4nRUZjowVGbNzgD5oF0s-x765xri9f0A0sRAqEvJkfJupEEXwX8LlI2ic2TFogbaG4fs/s200/tQu3Nj7TRUOarj3YNad6LQ_thumb_1668.jpg" width="200" /></a>We found out almost one year ago today that his cancer was in remission. It was such a blessing and the best timing going into everything we faced. It seems crazy to me that it has almost been one year since his bone marrow transplant too. Lots of pictures and videos have been popping up and flooding my facebook and snapchat memories. Seeing videos of him a year ago is mind blowing. He has come so far and is so different, he has so much hair now! His resilience still amazes me. I am still blown away by how strong he is and what a loving, compassionate and gentle little boy he is. He is definitely an old soul and has taught us so many things in his two years.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhPAF8OUZOg_Sk_3VmeVr1RGvCz8kznJxUzUvzOknZNamI4ND8bHOXR2dTCR7qoVHuvZm5MewWlLjO3sJoy9DYuSN_ZtDyAXDiQwgauQ7-_PwQS20rchiZma88kM-QFeJ96Hr2ywLdXks/s1600/IMG_3435.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhPAF8OUZOg_Sk_3VmeVr1RGvCz8kznJxUzUvzOknZNamI4ND8bHOXR2dTCR7qoVHuvZm5MewWlLjO3sJoy9DYuSN_ZtDyAXDiQwgauQ7-_PwQS20rchiZma88kM-QFeJ96Hr2ywLdXks/s200/IMG_3435.JPG" width="150" /></a>And I can't believe it's almost the end of June! Sebastian celebrated his second birthday June 4th! A huge milestone for all of us! We did a Vikings and dragon theme, and <a href="http://www.icingsmiles.ca/">Icing Smiles Canada</a> and Krista at <a href="https://www.simplysweetltd.com/">Simply Sweet YYC</a> are to thank for our amazing dragon cake! We had numerous family and friends come out to celebrate and we could not have asked for a more perfect day! We have spent so much time outdoors enjoying the beautiful weather. Sebastian loves to be outside, wants to go to the park all day and discovered the water park recently as well. We are looking forward to the July long weekend with family in Saskatchewan for Nate's family reunion and some much needed vacation time.<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiyygUM761cJ4ahOWRH8oWxGHAeZltXtlo0F6-lH8SktWhnt5esiXxUNOJ2F1bSe4UKNwrZlP5XTfIm1UPq1ese4-V7QmWPqf5wXWfmbAYWR8_t9sPiQcA04y3-n18knkMIxd7uFBiUC80/s1600/IMG_3740.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiyygUM761cJ4ahOWRH8oWxGHAeZltXtlo0F6-lH8SktWhnt5esiXxUNOJ2F1bSe4UKNwrZlP5XTfIm1UPq1ese4-V7QmWPqf5wXWfmbAYWR8_t9sPiQcA04y3-n18knkMIxd7uFBiUC80/s200/IMG_3740.JPG" width="150" /></a><br />
As always, thank you for your continued love, prayers, and well wishes, we would not be where we are today without you all! And the quote that speaks to me the most in this moment, "Always pray to have eyes that see the best, a heart that forgives the worst, a mind that forgets the bad, and a soul that never loses faith."<3 p=""></3>Terrahttp://www.blogger.com/profile/14631528262963150914noreply@blogger.com1tag:blogger.com,1999:blog-5770509328661642720.post-51319455640280597012018-05-07T19:54:00.000-07:002018-05-07T22:13:00.241-07:00Third Time's the Charm<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjow0oQikLMQvUakPKMS7hoIMDk-rDq9YxfiXFDY9I_vtgAsfiMms2-mnwEz1LmeyAfvHsqOkBTKgSYmuz5EhX-T98Py5aDEn5V32Wn-g7Y7pmajMLFvRyA0Zufl6ovjgHF3VEh4j9839A/s1600/IMG_2940.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjow0oQikLMQvUakPKMS7hoIMDk-rDq9YxfiXFDY9I_vtgAsfiMms2-mnwEz1LmeyAfvHsqOkBTKgSYmuz5EhX-T98Py5aDEn5V32Wn-g7Y7pmajMLFvRyA0Zufl6ovjgHF3VEh4j9839A/s200/IMG_2940.JPG" width="150" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEitNCUgr8jdHICLEhFpXEAOQKufKRmD04_0IABc1dafDRaPSisvdc4VI9IhreXrcMWzyLRJAs35DeqM99YRnZjXOKLoMbSTs5O5zWslr5VGcyIFPNoFKERPvoN0vRtb8ApU47JD_wuAa4E/s1600/IMG_2965.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1280" data-original-width="960" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEitNCUgr8jdHICLEhFpXEAOQKufKRmD04_0IABc1dafDRaPSisvdc4VI9IhreXrcMWzyLRJAs35DeqM99YRnZjXOKLoMbSTs5O5zWslr5VGcyIFPNoFKERPvoN0vRtb8ApU47JD_wuAa4E/s200/IMG_2965.JPG" width="150" /></a>Some good news and some bad, I'll start with the good. Our donor, bless you where ever you are, agreed to donate again! We found out shortly after my last post. He went in to donate his blood today, then his blood travels to us from wherever he may be - we suspect Europe somewhere, and it will be ready for Sebastian on Wednesday May 9th. We are being admitted Tuesday night, then get a pass, same as the last two boosts. This time will be slightly different as this blood will be a 'live' donation as it will not be frozen first. There is higher risk for graft vs host disease with a live donation and Bash will be given approx 10,000 cells like in his first boost. The donation should be higher concentrations of B-cells and stem cells, which we all hope kick start those cells into gear.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSlYDX_Yz-Og2mvzoOfxx1-mlf1HFg3j5TapH3bF2sSZuCsNdfx5YL_05cit_LpPjEYjvlzSz-uh6EmhXXiChS8lGkCQLI6x-F_gzunb_4oDqo6H1NAZSdY5H9lg2rdIPbzGRSwrSyTd4/s1600/IMG_2984.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSlYDX_Yz-Og2mvzoOfxx1-mlf1HFg3j5TapH3bF2sSZuCsNdfx5YL_05cit_LpPjEYjvlzSz-uh6EmhXXiChS8lGkCQLI6x-F_gzunb_4oDqo6H1NAZSdY5H9lg2rdIPbzGRSwrSyTd4/s200/IMG_2984.JPG" width="150" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwHG8-vmYkoSn6tGMrzKO_F_uAijjqyswfv_yRbaAU67KK89KvZyzuCvbeSBleqlJlTgxN_iAe-AU0iIzlH5sdyojwRhutxPGAN_jaJ-miJdGy08N2ABhe13tJf4J779ja6s3uuf1-obk/s1600/IMG_7699.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwHG8-vmYkoSn6tGMrzKO_F_uAijjqyswfv_yRbaAU67KK89KvZyzuCvbeSBleqlJlTgxN_iAe-AU0iIzlH5sdyojwRhutxPGAN_jaJ-miJdGy08N2ABhe13tJf4J779ja6s3uuf1-obk/s200/IMG_7699.JPG" width="150" /></a>The bad news is we got chimerism results back and those pesky B-cells are still dropping. They currently sit at 61%, previously 69%. His T-cells are at 97% which is good as they have been staying steady, previously 98%, and his doctor said it would be more worrisome if those were dropping too. His Myeloid cells are now at 84%, down from 86%. We are really hoping third times the charm on this one as it's really felt like we have all been dragged through the mud for the past few months. Don't get me wrong, things could be way worse. Sebastian is healthy, and he is cancer free! I just feel like I live life on the edge, as every bump or bruise, every fever, every cough, every day that he might be fussier than normal, it terrifies me. That the what if's are always there staring you blankly in the face and it can be really hard to stay positive about this whole crumby cancer situation. I just want him to be ok, I don't want to worry anymore if his cells are up or down, purple or blue, I just want him to be better, to grow up, and to not have to keep visiting the oncology clinic every week. I so badly want to be past this part and looking forward.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgE_wByzhIDnzmk7pYCSkyiMjPRZZKX9_GiltCcEqe4otkTBja83TihChsVGR-OvrVMqJttzZqLE26F1i1JM4BViauseEV6R35tS1y0zLASicWxFYSxc60NtuBPfhaHQf2G5sCSW-ioCak/s1600/IMG_7706.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgE_wByzhIDnzmk7pYCSkyiMjPRZZKX9_GiltCcEqe4otkTBja83TihChsVGR-OvrVMqJttzZqLE26F1i1JM4BViauseEV6R35tS1y0zLASicWxFYSxc60NtuBPfhaHQf2G5sCSW-ioCak/s200/IMG_7706.JPG" width="150" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhgT_qRe7idj_ZrtA_Ek9vtY26lwyPBI-Qv9hE1Qmdovlj0anHEFenOgfjpVF_IBnKi6-BlkeyC-TQQEppCG96gJr8NcdYI7VsbGsxd55h-YxpAxe8FcObmM0a4vwBRRFeKljybGu1TrLM/s1600/IMG_3045.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhgT_qRe7idj_ZrtA_Ek9vtY26lwyPBI-Qv9hE1Qmdovlj0anHEFenOgfjpVF_IBnKi6-BlkeyC-TQQEppCG96gJr8NcdYI7VsbGsxd55h-YxpAxe8FcObmM0a4vwBRRFeKljybGu1TrLM/s200/IMG_3045.JPG" width="150" /></a>He's seriously such a champ, does his weekly blood work now with less and less tears. He is a very active and charming little boy. He is growing more and more independent everyday. Yesterday I was out front with him and he started walking, guess we are going for a walk I thought. He walked all the way to the park - about a 7 min walk from our house. He knew how to get there all by himself, practically dragged me there haha, and was so proud when he found it! If he ever figures out the front door and I can't find him, I know where I'll look first!<br />
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Please keep us all in your thoughts and prayers this Wednesday and in the weeks that follow, I feel like we need some extra positive vibes in our lives. As always, thanks for all the love.Terrahttp://www.blogger.com/profile/14631528262963150914noreply@blogger.com1tag:blogger.com,1999:blog-5770509328661642720.post-65503392456252526222018-04-09T21:43:00.000-07:002018-04-09T21:43:27.094-07:00We Could All Use A Boost<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2MGu3iJataopOuhpD5xp_q6qVpEaCVpKmtypofgI0na7nQHM-qmzNODS6pTD2qYtlF4T_PD6byDCED8YxROVePA5abi-DDzPev9rSuJjqHoOHsuhmCfxPbK4WZbyYHqWBF7Ia6VeH6z0/s1600/IMG_2519.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2MGu3iJataopOuhpD5xp_q6qVpEaCVpKmtypofgI0na7nQHM-qmzNODS6pTD2qYtlF4T_PD6byDCED8YxROVePA5abi-DDzPev9rSuJjqHoOHsuhmCfxPbK4WZbyYHqWBF7Ia6VeH6z0/s200/IMG_2519.JPG" width="150" /></a>Sebastian's first boost happened on February 21st. He was admitted the night before and given a pass so we could sleep at home. We were back at 9am the next morning and the nurses started two IV's on him. One for the donor boost and one as a reaction line in case he had a reaction to the donor blood. We opted for one in his hand and one is his foot so that he could still use one hand to play and eat. Child life came in and did some amazing distracting while the nurses started the IV's and then found him an awesome 'car' wagon which we couldn't get him out of! Once the IV's were in he was started on fluids to help hydrate him and flush his system. He was given a few medications in preparation for the boost, and then we waited.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8-NZjjlxRA-N4ZrBLR7lMv5mLOAFiNBeh5q_AmcTkdKiCatIP2rpSCZRgsXz1jqGxC_UTEKOox-nCDflEbDKMYqBnpkz7HM120DO7HwjPgv8reHodu_Qgv6XJEE9JqutvAKo1cLZStcM/s1600/IMG_2711.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="960" data-original-width="1280" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8-NZjjlxRA-N4ZrBLR7lMv5mLOAFiNBeh5q_AmcTkdKiCatIP2rpSCZRgsXz1jqGxC_UTEKOox-nCDflEbDKMYqBnpkz7HM120DO7HwjPgv8reHodu_Qgv6XJEE9JqutvAKo1cLZStcM/s200/IMG_2711.JPG" width="200" /></a>The donor blood came up from the lab frozen and had to be carefully thawed in order to try and preserve what we didn't need for another boost. Once thawed the amount given was so small! He was given less than 10ml and it was pushed in from a syringe in under a minute. He received the boost just after 1pm and he slept through the whole thing. We were told he was given 10,000 cells per kg. He was given more fluids after in order to flush the <a href="https://en.wikipedia.org/wiki/Cryopreservation">cryopreservatives</a> that are present in the donor blood, as they are extremely hard on the kidneys. We stayed until just after 6pm and were sent home.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZzTLvDEFe1AhaRjhE-2X9lknIKUCsUhF8neq7WjMxtLOGJLFW4-lumdy6GpJ_L0C6IDGvmLfNS3hS2UgZ80K_sB_6lInFi7UWPNAlROshthLZsTLcka14OB_uH9phdtCDzz6ptIKW5kY/s1600/5160185024_IMG_2523.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZzTLvDEFe1AhaRjhE-2X9lknIKUCsUhF8neq7WjMxtLOGJLFW4-lumdy6GpJ_L0C6IDGvmLfNS3hS2UgZ80K_sB_6lInFi7UWPNAlROshthLZsTLcka14OB_uH9phdtCDzz6ptIKW5kY/s200/5160185024_IMG_2523.jpg" width="149" /></a>We had to wait three weeks after to do the blood test called a <a href="https://www.seattlecca.org/healthcare-professionals/clinical-labs/clinical-immunogenetics-laboratory/chimerism-testing">chimerism</a> which tests the percent of donor blood present in Bash's body. He had weekly clinic visits with regular blood work to check for graft vs host disease. After the third week, we waited another week and a half for chimerism results. They were not quite what we had hoped for. His B-cells dropped more. He started at 74% before the boost and they were now 67%. Our oncologist decided another boost was our best choice and Bash was scheduled for his second boost for April 3rd.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYmVT5Rbb4AjvvCD6n4nGZev7GeVtOekS2zES_6mNFaLOTStKPhvXnbrg1jqqbIOGyrEgeGjLm-pa4zdpIobS50xhtP3x2CQ1WaOTKhgWhNyO-mFRx2RykwpMceP0BrE3ScATu-R7jw7Y/s1600/IMG_7569.PNG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1334" data-original-width="750" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYmVT5Rbb4AjvvCD6n4nGZev7GeVtOekS2zES_6mNFaLOTStKPhvXnbrg1jqqbIOGyrEgeGjLm-pa4zdpIobS50xhtP3x2CQ1WaOTKhgWhNyO-mFRx2RykwpMceP0BrE3ScATu-R7jw7Y/s320/IMG_7569.PNG" width="179" /></a>We had lots of fun in between boosts, we took Bash sledding, had family visits, got his hair cut for the first time, enjoyed an Easter away in Banff - our first official holiday away as a family since diagnosis. And much more. We also welcomed our adorable new niece Nova Lynne to the family!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEik94sLb_m57QgK__AI7lzpwkSUVBTsfipB9OacgAj7o7C7nCoPAjdTQLy30ZM9Dso7gM88Fe7Zr42uKFujMFgVfyVJBk36CMcwk0yjy8zjUJiyC7lJIpy_KtEvDG80C1JOPW0YifgnD6A/s1600/5193643920_IMG_2575.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1067" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEik94sLb_m57QgK__AI7lzpwkSUVBTsfipB9OacgAj7o7C7nCoPAjdTQLy30ZM9Dso7gM88Fe7Zr42uKFujMFgVfyVJBk36CMcwk0yjy8zjUJiyC7lJIpy_KtEvDG80C1JOPW0YifgnD6A/s200/5193643920_IMG_2575.JPG" width="133" /></a>April 3rd went the same as the first boost. We were admitted the night before and given a pass to sleep at home, then return in the morning. This boost was significantly more cells as it turned out the viability was only 8%. Our oncologist did not have high hopes that this boost would do much, but wanted to take the chance as it is better than doing nothing. The amount Bash received this time was 1,000,000 cells per kg. and it was hung in a bag this time - approx 200ml and given to him over two hours instead of under a minute. He then had his fluid flush and the cryopreservatives were much more noticeable as Bash had a distinct 'corn' smell. We didn't leave the hospital until 9pm. We were given the option to stay overnight which we (happily) declined and looked forward to climbing into our own beds after a long day.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2tXPBy4LjDjQU0WDijvoT3rR_CYrabl8b4lBmi-6q2LN8p-hPG_kTklAJ78eXvx_JR0-vUUaMIVOpfT7anY9AyacQ3bLeoeDDSzaRgqRbSomfqfXKjNZgIgyiO6KXIQjCJtjZWDdQ-80/s1600/IMG_2816.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2tXPBy4LjDjQU0WDijvoT3rR_CYrabl8b4lBmi-6q2LN8p-hPG_kTklAJ78eXvx_JR0-vUUaMIVOpfT7anY9AyacQ3bLeoeDDSzaRgqRbSomfqfXKjNZgIgyiO6KXIQjCJtjZWDdQ-80/s200/IMG_2816.JPG" width="150" /></a>Sebastian has his first clinic visit tomorrow post second boost, and will still be seen weekly. At three weeks we will repeat the chimerism test. Our oncology team has already started the paperwork to contact our donor as they would like to give Bash a third boost of fresh donor cells in hopes we can get those B-cells climbing again. If the donor is willing to donate then we will hopefully be looking at another boost in approx 2-3 more weeks. We will not wait for the chimerism result but will still be hopeful that it has helped.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZfC1tCbIlIOBI5yjubwcE4TQe1qHPVesl13g5aAVaegyOmwBgsm5XIXx-5Jc4O8DVgM91fVLu_OkrDzOGmoq9QkTF2MIsEGGnqd1nO0Ct3D7CAYXHbspMzMJBt7JZdNChC-R4PMTArNA/s1600/IMG_2597.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZfC1tCbIlIOBI5yjubwcE4TQe1qHPVesl13g5aAVaegyOmwBgsm5XIXx-5Jc4O8DVgM91fVLu_OkrDzOGmoq9QkTF2MIsEGGnqd1nO0Ct3D7CAYXHbspMzMJBt7JZdNChC-R4PMTArNA/s200/IMG_2597.JPG" width="150" /></a>The waiting is hard, and the not knowing is even harder. I heard a quote recently that really spoke to me, "Sometimes when you are in a dark place you think you've been buried, but actually you have been planted."<br />
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Bash has been energetic, happy, and is loving life - except for those terrible two's that seem to be creeping in here and there to keep us on our toes!<br />
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I want to take a moment to acknowledge the devastating tragedy that happened over the weekend with the Humboldt Bronco's. It hit close to home, not just because we are from Saskatchewan but we had family on that bus. Thankfully he is going to make it, my heart is heavy knowing so many didn't. We are thinking of you, your team mates and your family Bryce. We are sending all our love and prayers to you and to everyone involved. #HumboldtBroncosStrong #TeamBash<br />
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Terrahttp://www.blogger.com/profile/14631528262963150914noreply@blogger.com0tag:blogger.com,1999:blog-5770509328661642720.post-66322493159966601372018-02-11T21:17:00.002-08:002018-02-11T21:17:32.017-08:00A New 'Normal"Life has been busy. It has been almost 3 months since I posted. I guess no news is good news. So much has happened in these past three months. Christmas, Bash's one year anniversary of diagnosis, New Years, and more.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgQEXF3ZV5ccX9gIkuWqQqoQOWp6H8qtv28-wfAUH2gJt1vzAa90BBZSxbL3P1I8f9lAiKxltPBnq5zGZULx-Sj3E8sJ7gWtCWhaIfppq_Lh1HdUxjHtMeaOU2TZk3ERZOHoZU1l0NP2UQ/s1600/IMG_1844.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgQEXF3ZV5ccX9gIkuWqQqoQOWp6H8qtv28-wfAUH2gJt1vzAa90BBZSxbL3P1I8f9lAiKxltPBnq5zGZULx-Sj3E8sJ7gWtCWhaIfppq_Lh1HdUxjHtMeaOU2TZk3ERZOHoZU1l0NP2UQ/s200/IMG_1844.JPG" width="150" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4BGjkAa0Xum6AdHP8QHSxJtV6yRqFiOCZ0PLbezb3ZYDM5U-bpICtq1dKHAuDkZGtHOnJ9PIMkuCUuTIZ4QkCgCZyFzUDQEkwwp9V1R30mpxXuAzOEMQS64HJo8AZUp2QW4SnELuHxwQ/s1600/IMG_1837.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4BGjkAa0Xum6AdHP8QHSxJtV6yRqFiOCZ0PLbezb3ZYDM5U-bpICtq1dKHAuDkZGtHOnJ9PIMkuCUuTIZ4QkCgCZyFzUDQEkwwp9V1R30mpxXuAzOEMQS64HJo8AZUp2QW4SnELuHxwQ/s200/IMG_1837.JPG" width="150" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4BGjkAa0Xum6AdHP8QHSxJtV6yRqFiOCZ0PLbezb3ZYDM5U-bpICtq1dKHAuDkZGtHOnJ9PIMkuCUuTIZ4QkCgCZyFzUDQEkwwp9V1R30mpxXuAzOEMQS64HJo8AZUp2QW4SnELuHxwQ/s1600/IMG_1837.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"></a>Lets start back in November. Sebastian had his broviac line removed! It was a fairly quick procedure, although we ended up waiting an extra hour or so in day surgery. It seriously wouldn't be normal for us if there weren't some sort of delay. Having the line out has been so awesome. Normal baths where we don't have to saran wrap him, no more weekly dressing changes on the line, no more line flushing or locking or worry that it would block, or that Bash would pull the line out. It has been a breath of fresh air to say the least. The only downside to not having the line is that our monthly check ups involve us going to the lab first for an arm poke to get blood-work. Sebastian has figured out very quickly what being in the lab means and his cry breaks my heart. He has figured out when I put on the 'freezy cream' (Ametop) on his arms to help numb his skin for the pokes, what is about to happen. He also started fighting the doctor and nurse exams - he knows whats up and wants no part of it, our cooperative little boy is now an independent toddler who wants his say and stands his ground very firmly.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgqd4BX-x-vPz0-KxpqkYC1N7FlAEzEp5n1VV-n65fCNVae3z8i4o1AccurXB8ISm7K1Fpj-n4_UGd1UQX7VgPlkEoEr0ejRjk2YwvCYbsBiIlugwWuQJidpAf0byJ7oGdV34kxlLjgMQg/s1600/IMG_2281.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1373" data-original-width="1364" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgqd4BX-x-vPz0-KxpqkYC1N7FlAEzEp5n1VV-n65fCNVae3z8i4o1AccurXB8ISm7K1Fpj-n4_UGd1UQX7VgPlkEoEr0ejRjk2YwvCYbsBiIlugwWuQJidpAf0byJ7oGdV34kxlLjgMQg/s200/IMG_2281.JPG" width="198" /></a></div>
December was then upon us in a flash. For Christmas we had plans for Nathan's family to visit. That all got thrown out the window when the flu took over. Flights were changed and/or cancelled, and visits were delayed. On top of that the weather turned very cold and all of the outdoor plans we had in mind to do had to be dropped as well. When family finally did arrive it was only for a few days and we stayed inside and kept warm. Even though our visit was short it was so lovely to have family here and to not have to travel anywhere - usually we are driving all over Saskatchewan to visit with family and friends. What a nice treat to stay put and have people come to us!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgzA_S87kTjOA0oaG5ZWhk8jdLhOarBgtqjlJSDlsfi0VbFozshrTFt8sROOw0ZnbZsGfE9OmC7iw54pB6Fh_RDsss5d-quP56XnJwXwnFHl1lRp9diU8MdOy7nTuekzl8JBh-V7nsW07k/s1600/fullsizeoutput_255f.jpeg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1600" data-original-width="1062" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgzA_S87kTjOA0oaG5ZWhk8jdLhOarBgtqjlJSDlsfi0VbFozshrTFt8sROOw0ZnbZsGfE9OmC7iw54pB6Fh_RDsss5d-quP56XnJwXwnFHl1lRp9diU8MdOy7nTuekzl8JBh-V7nsW07k/s200/fullsizeoutput_255f.jpeg" width="132" /></a>New Years Eve was a very emotional day for all of us. One year since Bash was diagnosed. As much as I wanted to forget this last year, the memories flooded in. Cancer robbed us many things this year. I was angry for a long time, am still angry, but it also taught me to be grateful, to cherish every moment, to love with all your being, to not sweat the small stuff, that family is everything. It showed us how strong we are, how much love surrounds us, what the important things in life are, and it taught me how to be humble. There were definitely a lot of tears, many cuddles and feelings of how unfair it has all been. Then there were memories of all the good things, the first crawl, first words, the first steps, Bash's ability to light up a room and send his visitors away with smiles, first birthdays, laughter - so much laughter. Through everything he has had to go through in this year he still managed to make those milestones, and show those around him what a fighter he is. To look at him is to love him, you would never know he was sick. For anyone who didn't see it, here is a link to the video I made for Bash's 1 year anniversary: <a href="https://youtu.be/YlHkgR4R1aA">https://youtu.be/YlHkgR4R1aA</a><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdLhJfclC4CabMNXCxh4ikVRsThmaKrpHrX36M3F77kRfWvwyGR7VA9bS0TZ91NIE1oTGZ8KFq5P8aKqEonuKOl8Mv-VM68H-up5ckCLaOff6Lb2SWnjNzgBN_rxjSofYRAV0aa6bWGV8/s1600/IMG_2179.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdLhJfclC4CabMNXCxh4ikVRsThmaKrpHrX36M3F77kRfWvwyGR7VA9bS0TZ91NIE1oTGZ8KFq5P8aKqEonuKOl8Mv-VM68H-up5ckCLaOff6Lb2SWnjNzgBN_rxjSofYRAV0aa6bWGV8/s200/IMG_2179.JPG" width="150" /></a>January 7th was officially 6 months post transplant and Sebastian was finally allowed to be in public! Being able to take him to the supermarket or the mall was super weird at first and we have still been very cautious of germs and limiting his exposure to sick people as much as possible. He has been in a whole new world and is in awe of every new place we take him! His personality is really starting to shine. He loves being outside and has been very 'chatty' in the past few weeks. Won't be long before he's talking our ears off! He can finally have play dates and is still getting used to other little kids, he's not sure what to do with them haha! I also started back to work on the second week of January, and Sebastian started going to his new Day-home. There are a couple other kids his age and it is only a few minutes drive away from us which has been really convenient. He seems to have transitioned well with a few half days to ease him into it. Although he cries and clings so hard to me when I drop him off, he settles in quickly and has a lot of fun there. He has even come home with some crafts!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-oavlVVCY712tZ3i1fBsIlahs2OfMnakDciyYoaERBYCh4DuqMlVglPF44P0cKtDdtdvSnkRmgLjiOU5lxU3b2doWKHNH3x6Pfv36lzGu77jc8uFXwY_vqjR2v0pL8jFg_mpkhrHbeag/s1600/IMG_2366.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-oavlVVCY712tZ3i1fBsIlahs2OfMnakDciyYoaERBYCh4DuqMlVglPF44P0cKtDdtdvSnkRmgLjiOU5lxU3b2doWKHNH3x6Pfv36lzGu77jc8uFXwY_vqjR2v0pL8jFg_mpkhrHbeag/s200/IMG_2366.JPG" width="150" /></a>Being back to work has been strange but good. It was time we got back into a routine and made an attempt at being 'normal'. Although I miss being home with him a lot, he needs the socialization with kids his age and interactions with other people who aren't doctors and nurses. And I needed to get out of the house and be around adults, and have my sense of self back. I'm very lucky that my shifts are Monday to Friday and vary each week so that some days I'm off at 3pm and can still hang with Bash for a few hours before he goes to bed, and that my evening shifts start at 230pm so I get some mornings with him too. The hardest part has really only been trying to work his monthly appointments around our work schedules.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjRi3ag8JnVesHkaEXkp6dRl3tYEhBuH1hMdujhMvUrze7L3EK7jsrRY9jc4zYn2ZmwrwQJDrgGqBN0oNob4wjf2OigkHsdFQGB4zrhrQas64bfye7EIUo_Vb3Ge2IP52bI9cib5R5fC-k/s1600/IMG_2351.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjRi3ag8JnVesHkaEXkp6dRl3tYEhBuH1hMdujhMvUrze7L3EK7jsrRY9jc4zYn2ZmwrwQJDrgGqBN0oNob4wjf2OigkHsdFQGB4zrhrQas64bfye7EIUo_Vb3Ge2IP52bI9cib5R5fC-k/s200/IMG_2351.JPG" width="150" /></a>And on that note, Sebastian's has had a few extra appointments in the last month as his last blood work showed some questionable results. He had an extra bone marrow biopsy and lumbar puncture to make sure there is no cancer on Jan 12th, and so far everything is cancer free. His donor B-cells have been slowly and steadily dropping off though and are currently sitting at 74%. Normally when donor cells drop it starts with the T-cells and so far Bash has 100% T-cells. Because there is a drop in his B-cells and that is where his cancer started, his doctors are concerned that with his own cells trying to come back that the cancer could return. We had a meeting last Wednesday (Feb 7th) to talk about our options and it was decided to give Bash a boost of donor cells. We have enough blood from his bone marrow donor stored that we can give him two boosts if needed and still have enough remaining if we ever need it for a transplant - touch wood we never do. We had more blood work done that day too so we can see if the B-cells start to come up on their own. We are crossing all our fingers and our toes that those cells start to rise. Even if the cells increase it will probably not be enough and the doctors want to give him the boost no matter what. It will be sort of like a mini transplant. He will receive the donor blood just like a blood transfusion as he did with the transplant but at a 1/4 of the dose and with no chemotherapy or immune suppressants. This will give the donor blood full strength and Bash will be at a high risk for Graft vs. Host Disease again. If he shows any signs of GVHD we will treat it as it comes. A little bit would be a good thing as it would mean the graft is strong and the cells are doing what they need to.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4e1zo9b3lomEPaLDlFAAZN18h4ugbid2XbXR63gUojfqUPw02lGpHhKcUPwTEiqQW51qQKnhhveBdWMfaXw30oVxbaVvrfqXZgJtZNCQT2fhc_dmOAFvE_wJ9uFBucDp3QgNSiyqYR4I/s1600/fullsizeoutput_2580.jpeg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1600" data-original-width="1372" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4e1zo9b3lomEPaLDlFAAZN18h4ugbid2XbXR63gUojfqUPw02lGpHhKcUPwTEiqQW51qQKnhhveBdWMfaXw30oVxbaVvrfqXZgJtZNCQT2fhc_dmOAFvE_wJ9uFBucDp3QgNSiyqYR4I/s200/fullsizeoutput_2580.jpeg" width="170" /></a></div>
We are very worried and have been on edge from these results. Hoping this boost is just the thing he needs and that it is as uneventful as possible. He will likely be admitted this Wed or Thurs (Feb 14th or 15th) or Feb 21st at the latest. It will be a day procedure as long as everything goes smoothly. Please send all your positive thoughts and prayers our way! Might take a month or two before we find out any results from the boost. We will keep everyone posted with anything we hear. Thanks for your continued support.<br />
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Love Terra, Nate and Bash.</div>
Terrahttp://www.blogger.com/profile/14631528262963150914noreply@blogger.com5tag:blogger.com,1999:blog-5770509328661642720.post-72131276281047575552017-11-13T21:43:00.001-08:002017-11-13T21:43:23.429-08:00100 Days and Onward<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEijLTZdywzzY2hGfQrjop_RP-BTh_sfunn0QtcckQw5e7zC1YAyTYW1gTVGXRLmDIL2OE8jLFLw87D4eN5Ms-wL0wJlh1uTg3_dRLupr9Vqs4oAgQcs48VQDUCxqLfdD8CGNZ4qYFSJTvE/s1600/IMG_1559.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEijLTZdywzzY2hGfQrjop_RP-BTh_sfunn0QtcckQw5e7zC1YAyTYW1gTVGXRLmDIL2OE8jLFLw87D4eN5Ms-wL0wJlh1uTg3_dRLupr9Vqs4oAgQcs48VQDUCxqLfdD8CGNZ4qYFSJTvE/s200/IMG_1559.JPG" width="150" /></a>Today is day 129 - Nov 13, 2017. On day 100 - Oct 15th, we stopped giving Sebastian many of his medications which felt really strange at first. All he takes now is <a href="https://www.webmd.com/drugs/2/drug-941/acyclovir-oral/details">acyclovir</a> 2x daily, <a href="https://www.drugs.com/septra.html">Septra</a> on weekends only, and an <a href="https://www.drugs.com/cdi/enoxaparin.html">enoxaparin</a> shot 1x daily. We learned on October 18th that Sebastian is cancer free and in remission!!! Yes, you read that right - Cancer free!!! His latest chimerism results showed fighter T-cells are 93% donor cells, myeloid cells are 100% donor, and B-cells are 95% donor! He will be re-checked via a bone marrow aspirate in approx 4-6 months. The bone marrow transplant was a success and we got the best news we could hope for!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMOiF1L-WcDa5W-UluZN8n3FJwSBZ8qO2n5ue_pcY0au-IIH-2Bc35eWSU79odBrQfbthzMt6KP3P5kxvIk76Gc1taXNucnmrYA3UBYcMI5tMrMj_vble-cR4ey6_2DCKB8051ckcH_qs/s1600/IMG_1595.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMOiF1L-WcDa5W-UluZN8n3FJwSBZ8qO2n5ue_pcY0au-IIH-2Bc35eWSU79odBrQfbthzMt6KP3P5kxvIk76Gc1taXNucnmrYA3UBYcMI5tMrMj_vble-cR4ey6_2DCKB8051ckcH_qs/s200/IMG_1595.JPG" width="150" /></a>He pulled his NG tube out on the morning of October 27th and I didn't tell the hospital, ha ha! We were so tired of having it in, and hardly used it any more, so delayed telling the doctors a few days. I trialled him that day with getting to his fluid requirements by mouth and he was totally fine without it. On his following Tuesday appointment our team were surprised to see it out but completely happy he was still meeting his 1600ml daily fluid intake goal, and we did not need to reinsert the tube. On October 31st his blood electrolytes had balanced out enough that we have been able to lower his fluid intake to approx 1300ml per day. They switched us to bi-weekly visits and if he remains stable, they said he will need only monthly visits now, which is awesome! He has been scheduled for <a href="http://www.cpmc.org/advanced/pediatrics/patients/topics/central-lines.html">broviac line </a>removal on November 15th! He will be able to have normal baths again!!! And go swimming! This day felt like it would never come and feels like a dream.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiaP_f2rdUDPnvj0GSu-oA31_JEoB73P8kVUDrUawV2bgn7h-VwmhM8C8S_Y-qnjYMr9_M3-VlXzWfbioJRuNGyt3KjbgaxcuL3xxa9pauA0XW_P2ExBCVYa5aCN7lwU7sSeJBEod9rHC4/s1600/7516790256_IMG_2222.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1600" data-original-width="1215" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiaP_f2rdUDPnvj0GSu-oA31_JEoB73P8kVUDrUawV2bgn7h-VwmhM8C8S_Y-qnjYMr9_M3-VlXzWfbioJRuNGyt3KjbgaxcuL3xxa9pauA0XW_P2ExBCVYa5aCN7lwU7sSeJBEod9rHC4/s320/7516790256_IMG_2222.jpg" width="242" /></a>Once the broviac line is out we can stop giving Bash his enoxaparin shot. The blood clot in his leg is still there but his body has created new routes around it and there isn't much risk of it breaking free and travelling anymore. He will likely have the clot for the rest of his life and it may only affect him if he plays sports later in life. He can wear compression stockings to help with blood flow if he is symptomatic (ie. his leg swells with physical activities).<br />
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For Halloween we all dressed up as pirates. I took Sebastian to clinic for our appointment that day all dressed up and all the nurses and staff loved his costume. This was the first day Sebastian walked around without holding my hand and I literally had to chase him around haha! We took him trick or treating around the bay where we live and he held out his little bucket for candy like a pro, he didn't want to stop and was sad when we brought him home!<br />
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We are currently looking into hiring a nanny and transitioning Bash into a day home as I'm going back to work in January. It seems a bit crazy to think we are mostly done treatments, and a bit unfair as many other cancer patients undergo 3+ years of chemo. I'm thankful we have no more chemotherapy, but know that we are far from over. Bash will have many checkups over the coming months and years. He is still at risk for <a href="https://my.clevelandclinic.org/health/articles/graft-vs-host-disease-an-overview-in-bone-marrow-transplant">chronic Graft vs. Host disease</a>. And because he had chemo he is also still at risk for secondary cancers later in life, as well as a host of other side effects that may or may not rear up later on.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhh1vkPGUn6EVyMuUjgaMPDd8FzPzsGxT9uhqqfD3gQVWeYonOD8qf2KxqzYBkLIF2TVuljB4FN9YZRpv21iWdEyqxi8YAvwZsOIQQv4avyh7iLJLue-5SbLtQLknnsQVXZKG_Qplr-pa0/s1600/7583907440_IMG_2155.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1272" data-original-width="1037" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhh1vkPGUn6EVyMuUjgaMPDd8FzPzsGxT9uhqqfD3gQVWeYonOD8qf2KxqzYBkLIF2TVuljB4FN9YZRpv21iWdEyqxi8YAvwZsOIQQv4avyh7iLJLue-5SbLtQLknnsQVXZKG_Qplr-pa0/s200/7583907440_IMG_2155.jpg" width="162" /></a>We have a host of questions to ask our primary nurse at our next appointment about when we are allowed to start taking Bash into public places again, when we can go farther than the city limits, and when we can travel, as well as when we can re-vaccinate, and when it's safe for him to be in contact with other people or even kids at daycares, etc.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhs8qz2y6yZ4fnPixdBEXNIvWIWv6w_ZxPIsu8ph_RcrjrEkKyfIUtSodCZEm8W4JHrwp3LJ3NwGY2g5WAQQA4qCBI75N5UMwRveooXCDgBZcQlB95iRpbjc_XMD0Y0oT03Ov9b3Vn4aQw/s1600/IMG_1684.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1067" data-original-width="1600" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhs8qz2y6yZ4fnPixdBEXNIvWIWv6w_ZxPIsu8ph_RcrjrEkKyfIUtSodCZEm8W4JHrwp3LJ3NwGY2g5WAQQA4qCBI75N5UMwRveooXCDgBZcQlB95iRpbjc_XMD0Y0oT03Ov9b3Vn4aQw/s320/IMG_1684.JPG" width="320" /></a>In the few months that we've been home full time Sebastian has been developing so much, and so fast it seems. He's grown a full head of hair, learned how to walk, climb the stairs, and gets into everything within his reach. For the most part we are supposed to stay inside and away from public places, outdoors is the only place that's 'safe' as long as no one around us is sick and there are a limited number of people. We get out to the park as much as possible and sneak on the slides if there aren't any kids playing there. On October 21st we went to our first Light the Night walk. It was the first time we had taken him anywhere that crowde, but we were still able to keep our distance from people. We had just found out a few days earlier his 100 day results that he was cancer free and we really wanted to celebrate with others who have battled this disease. It was so much fun! Bash really enjoyed being outside and watching all the people buzzing around and all the dogs too. He is such a friendly little guy and was smiling at everyone and pointing at everything. He got to hang out with his cousin Sam a bit too which was great, and something we really miss doing. We can't wait until we have the all clear that Bash can play and socialize with other kids. He gets so excited when he see's other kids, it's hard to keep him away.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEibWXHX1z151l0FeEXnVA_bBqxylbybxcC-U-4Ar-AS5KnkkOJdTuoquIi2_ELb1nHUsW8im47hmVOxduOp6J0mLTDeiRO6GmBUJtBTT1W_czuD7IcSX45QLzDw7PnIQ1xw3dRHmVMa_ac/s1600/7516846816_IMG_2231.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1067" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEibWXHX1z151l0FeEXnVA_bBqxylbybxcC-U-4Ar-AS5KnkkOJdTuoquIi2_ELb1nHUsW8im47hmVOxduOp6J0mLTDeiRO6GmBUJtBTT1W_czuD7IcSX45QLzDw7PnIQ1xw3dRHmVMa_ac/s320/7516846816_IMG_2231.JPG" width="213" /></a></div>
It has been really hard for Nate and I to show our excitement about Bash's progress. Although we are so so very happy, I feel it has been tough to let our guard down. When we first heard the wonderful news from our team that Bash is cancer free, our response was pretty tempered, just 'ok cool, thank you for the news'. When telling family about him being cancer free we got so many happy tears and excited cheers of 'way to go buddy!' and 'we can't believe it!'. We found ourselves wondering why we weren't more excited, and I have realized I'm terrified to accept this as our new 'normal' and then have another let down. Seems a bit silly writing that, and with this realization I am working on trying to let go a bit and enjoy the moment, trying not to worry about the future and what it holds. I am working on being ok without cancer - which is wonderful, but cancer really changed me, changed us, and it's been tough to accept that.<br />
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Nate and I have both started to reflect quite a bit as we are coming up on the 1 year anniversary of Sebastian's diagnosis. Planning for Christmas seems to have really brought out the memories from last year and everything we've been through since the diagnosis on December 31st. In many ways it still feels like a bad dream, and I think we are ready to get past this and to finally look forward to life ahead of us again. It has been quite a journey and everyday we are grateful for all the people who were behind us helping to get us through it. It meant so much to us to be with Sebastian and focus on getting him better and we couldn't have done it without our wonderful friends and family.Terrahttp://www.blogger.com/profile/14631528262963150914noreply@blogger.com2tag:blogger.com,1999:blog-5770509328661642720.post-67014423099622485652017-10-05T12:10:00.003-07:002017-10-05T12:10:59.087-07:0010 days to 100<div>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgSq7B5WeDMuvLZPOJ5LA7Ik40A8Kknseel3XAW92jApnQ00_KWb3jIglIMkHse-H0PaGe5-T378NfsZ9eNYtmaKkcp6WxHK4r5bIsneww-NBLrXjkuRST7FvTW-aYMtWI5RN1azQHjkkw/s1600/IMG_1341.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgSq7B5WeDMuvLZPOJ5LA7Ik40A8Kknseel3XAW92jApnQ00_KWb3jIglIMkHse-H0PaGe5-T378NfsZ9eNYtmaKkcp6WxHK4r5bIsneww-NBLrXjkuRST7FvTW-aYMtWI5RN1azQHjkkw/s320/IMG_1341.JPG" width="240" /></a></div>
90 Days today! Seems like time has been dragging on and at the same time speeding by like a jet. Sebastian is a rockstar and has been doing awesome! We found out 3 days ago that his body is finally making fighter T-cells, and they are 84% donor cells. This is a good thing, and they should eventually get to 100%. We started weaning his medication (<a href="https://en.wikipedia.org/wiki/Ciclosporin">Cyclosporin</a>), which suppresses his immune system making those fighter cells 'lazy' so they won't attack him. With the wean there is potential for <a href="https://en.wikipedia.org/wiki/Graft-versus-host_disease">graft vs. host disease</a> (GVHD) to rear up, so we are on high alert for any rashes or symptoms showing he could be rejecting the donor or the donor rejecting him. We also learned his blood type changed from A- to O-! Neat. <div>
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This week was the first week we only had to go in to the out-patient clinic once! We have been regulars there lately, heading in at least twice a week to be sure his kidney's were ok and getting fluid boluses when his blood electrolytes (lytes the docs call them) remained high. With the wean of the Cyclosporin we should see less strain on his kidneys and thus a lower <a href="https://www.kidney.org/atoz/content/what-creatinine">creatinine</a>, <a href="http://www.ch.ic.ac.uk/rzepa/mim/environmental/html/urea_text.htm">urea</a>, and <a href="https://medlineplus.gov/potassium.html">potassium</a>. With these lytes balancing out, we can also drop off of giving <a href="https://www.webmd.com/drugs/2/drug-3731/kayexalate-oral/details">Kayexalate</a> for his high potassium and we shouldn't need to pump him full of so much water meaning the NG tube may finally come out! Hallelujah! He may start eating foods again.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDy9U91pYu7MbncleDkhHOwVjLekI-0viKc4u_9pk8oA4S4yrul85AxgBh-kpgjaDb3ZBV4RhvgMQ-pmrkxZ2W11T7ObaCaS7fKXrquWylxZaxHsUisQyRTtKjCiD9muCSRBkJCAd9_0A/s1600/IMG_6973.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDy9U91pYu7MbncleDkhHOwVjLekI-0viKc4u_9pk8oA4S4yrul85AxgBh-kpgjaDb3ZBV4RhvgMQ-pmrkxZ2W11T7ObaCaS7fKXrquWylxZaxHsUisQyRTtKjCiD9muCSRBkJCAd9_0A/s200/IMG_6973.jpg" width="200" /></a></div>
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Next Tuesday (day +95) we go in for our weekly clinic visit, and we have our first bone marrow biopsy post transplant to check the bone marrow for a few things. We want to see if the donor marrow is 100% at the source, and also check for any leukemia cells. Bash will also have a lumbar puncture again to check for leukemia cells in his spinal fluid as they like to hide in there. He will be put under anesthesia for these tests and because he is over a year old now we can do them in the day treatment room instead of going all the way up to day surgery which is much less timely. He wont be allowed to eat anything after midnight and can only have water or clear fluids until 6am - wish me luck on that one as he still wakes 2-3 times in the night for a bottle! </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfB41gtjrN3PDHQaRul5XAbVuJ_gUYu_3b5WIBUgkHaiJuvR_EWG2ZpaG_mcLQaEsTEVk6-7fgj11MgGUEx2hwuLBvrq4QyHJGY0urAXomwm65K1qZ4t7Em-v_lz0L1M5a8WVDpaARE78/s1600/IMG_1385.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfB41gtjrN3PDHQaRul5XAbVuJ_gUYu_3b5WIBUgkHaiJuvR_EWG2ZpaG_mcLQaEsTEVk6-7fgj11MgGUEx2hwuLBvrq4QyHJGY0urAXomwm65K1qZ4t7Em-v_lz0L1M5a8WVDpaARE78/s320/IMG_1385.JPG" width="240" /></a>His day +100 falls on October 15th (coincidentally my mom's bday) and we can stop some of his medications! He will continue to wean with Cyclosporin as long as there is no evidence of GVHD. He can drop to twice a day <a href="https://en.wikipedia.org/wiki/Aciclovir">Acyclovir</a> which he currently needs 4 times a day. We can stop <a href="https://www.drugs.com/cdi/fluconazole-tablets.html">fluconazole</a> completely. If his <a href="http://www.cpmc.org/advanced/pediatrics/patients/topics/central-lines.html">broviac line</a> is removed (there are plans to remove ASAP as one of the lumens is still blocked) then we can stop giving his once a day needle of enoxaparin. If that line comes out he can have normal baths and go swimming again! We wont need to wrap him up in saran wrap to keep the line from getting wet! He will need to have blood drawn to check it still and the nurses will do this peripherally in his arm with a needle each time, which I can't see him being very happy about, but hey baths!!!</div>
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Some big days ahead here. Thoughts, positivity, prayers, and love are all appreciated - it has got us though so much already. I am nervous, terrified really, yet excited and happy. Look how far we have come! <div class="separator" style="clear: both; text-align: center;">
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Terrahttp://www.blogger.com/profile/14631528262963150914noreply@blogger.com3tag:blogger.com,1999:blog-5770509328661642720.post-1917673937125579472017-09-18T21:51:00.000-07:002017-09-18T21:51:20.823-07:00Days +50, +60, and +70<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjoRG4xuO8BHWK1ULiFiOuqRZO-nRDQ4DX_vbzY0fCuhi0GctWPrTLwXb2RCDKCJS9uBohMX8QPRjqv2WrOGBFfxZZEmKHdGZNkrKgu17KZ5sa4XV6Dn6qv8W7HDvfnWe5o1G-vznyVEz4/s1600/FullSizeRender+2.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1462" data-original-width="1472" height="316" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjoRG4xuO8BHWK1ULiFiOuqRZO-nRDQ4DX_vbzY0fCuhi0GctWPrTLwXb2RCDKCJS9uBohMX8QPRjqv2WrOGBFfxZZEmKHdGZNkrKgu17KZ5sa4XV6Dn6qv8W7HDvfnWe5o1G-vznyVEz4/s320/FullSizeRender+2.jpg" width="320" /></a></div>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgA9rAaZGr9FY4CidB56JY-RET4CjkOBmOGbGl5zZM_36q8EHE3rfCLkqQhWZZwH7XlTDpLP6wY0kAnfjCsNGbAEKJVoyiOROvHM-YTf4-j7Qyh9N6-Yci-kBFNjB3RmbTZddbYKbnDFeY/s1600/IMG_0278.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1067" data-original-width="1600" height="133" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgA9rAaZGr9FY4CidB56JY-RET4CjkOBmOGbGl5zZM_36q8EHE3rfCLkqQhWZZwH7XlTDpLP6wY0kAnfjCsNGbAEKJVoyiOROvHM-YTf4-j7Qyh9N6-Yci-kBFNjB3RmbTZddbYKbnDFeY/s200/IMG_0278.JPG" width="200" /></a>August 26th was 50 days post bone marrow transplant. We made it halfway through the acute phase of transplant! He is doing so awesome! He finished his two week course of antibiotics Aug. 25th and we started visiting the out patient clinic twice a week instead of daily. He is loving the freedom to crawl around the house and we are scrambling to baby proof everything. He is so close to walking unassisted. His favorite thing to do is have you walk him around the house and he enjoys pointing at something and having you tell him what it is over and over. My dad and his wife came to visit us for a few days, we had a BBQ to celebrate their recent marriage and Bash making it to 50 days. The weather was perfect. <br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOn4MC6vb-qNs05bugqNihwEA7sYcdlIwIAeU6U3kPzMD4dP3i6mI1JfapCVnFXasPlBL_LcI6TPYBdwXwKAe6AyhRW11tvEQIFBd4xqxCkJVWV0RZYtpvs51RB21MQYChX2LdGm_4Zfw/s1600/IMG_1188.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOn4MC6vb-qNs05bugqNihwEA7sYcdlIwIAeU6U3kPzMD4dP3i6mI1JfapCVnFXasPlBL_LcI6TPYBdwXwKAe6AyhRW11tvEQIFBd4xqxCkJVWV0RZYtpvs51RB21MQYChX2LdGm_4Zfw/s200/IMG_1188.JPG" width="150" /></a>Bash has had high creatinine, urea, and potassium for the past week and every clinic visit the doctors have asked us to get him drinking more and more. August 29th we visited clinic and it was decided an NG tube should be placed again. This was super frustrating for me as Bash had just started eating again and I felt I could give the extra fluids he needed by mouth. The doctor disagreed unfortunately. He has been given extra fluids via IV over 30 minutes through his broviac every one of our clinic visits as his kidneys are working too hard and could be damaged if we don't flush his system. He has also been given a drug to help his body get rid of the extra potassium called <a href="http://www.webmd.com/drugs/2/drug-3731/kayexalate-oral/details">Kayexalate</a> and he hates it. It doesn't taste like anything but is very chalky. We mix it in at least 50ml of water and he usually spits it right out. The one benefit of having the tube is we can give it to him through it and he doesn't have to swallow it - he doesn't even know!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiv9fFgk3EedX5dkcP2tJJv5ImfLQxiLPKKJpZb7OEPEPlnu2yko4ysiNIC6o6MxBZr5xisSWiiVDPBytw777KKeklXFtfdes24ba60FsBfNj8Ja1LjjkPkWJ-KvgQliL_b-6z2NjZVLDA/s1600/IMG_1171.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiv9fFgk3EedX5dkcP2tJJv5ImfLQxiLPKKJpZb7OEPEPlnu2yko4ysiNIC6o6MxBZr5xisSWiiVDPBytw777KKeklXFtfdes24ba60FsBfNj8Ja1LjjkPkWJ-KvgQliL_b-6z2NjZVLDA/s200/IMG_1171.JPG" width="150" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJ-GAiDm2dpKhv_iiPGX9oPySIUgXPZfFuXhmkfIFXS86WW-TnUJRbXl_1JFeh3TkiL-a4KBLR8k9FckiLUWRMaXoH7IwahmL1UU8cidFn3ZNHvGAyBW_xpJYdjlLW2eNuO-gsYwKadKE/s1600/FullSizeRender+3.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1600" data-original-width="1143" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJ-GAiDm2dpKhv_iiPGX9oPySIUgXPZfFuXhmkfIFXS86WW-TnUJRbXl_1JFeh3TkiL-a4KBLR8k9FckiLUWRMaXoH7IwahmL1UU8cidFn3ZNHvGAyBW_xpJYdjlLW2eNuO-gsYwKadKE/s320/FullSizeRender+3.jpg" width="228" /></a>I cried like a baby when they put the tube in, Bash screamed bloody murder the whole time too. I really felt like a failure and it felt like the hugest set back. I knew with the tube in he would regress back to not eating which has happened. We have been told by a family friend that has had a tube in before that it feels awful, anything they swallow seemed to stick to the tube going down making him gag so its no wonder Bash doesn't want to eat. Even with the Kayexalate and the extra fluid his potassium remains high and every single visit they ask us to increase his fluids more. Currently he needs 1600ml per day, that's 1.6L! That is more than I drink in a day! It seems crazy to me that we need to push that much fluid into him and it is a full time job making sure he gets it all in by the end of the day. The last time they asked us to increase his fluids I flat out said no, lol. I know he needs it, and obviously do my best to make sure he gets as much as possible, that being said I am up three times a night with him for bottles and then am spending another 30 mins putting water through his tube. During the day we try to get him to eat, then give him a bottle and top him up with water so that he gets at least 200ml or more every couple hours. It's tedious business.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhAsC3S7vkW2O4Tvnf7EWj8aIzkNCqePwclbY4xrOYI4fJ4q74X1G1P9p4dbKg0dpj2GiQ2otioJ_aS81AkSeCGzSw8MbMY9HH_8soCq7XJ65nxE5II2mGINCm56sM9uwHeWTS78OUOn4Q/s1600/IMG_1198.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhAsC3S7vkW2O4Tvnf7EWj8aIzkNCqePwclbY4xrOYI4fJ4q74X1G1P9p4dbKg0dpj2GiQ2otioJ_aS81AkSeCGzSw8MbMY9HH_8soCq7XJ65nxE5II2mGINCm56sM9uwHeWTS78OUOn4Q/s200/IMG_1198.JPG" width="150" /></a>Its actually a vicious circle as the medication, Cyclosporin, that helps prevent rejection of the new bone marrow is what is causing the stress on his kidneys. We were weaning it slowly but stopped weaning it when the results of his <a href="https://www.seattlecca.org/healthcare-professionals/clinical-labs/clinical-immunogenetics-laboratory/chimerism-testing">chimerism</a> came back showing he has 100% donor cells (awesome!) but that no fighter white T-cells or B-cells have been produced yet and once those come in there is a higher risk of graft vs host disease and in order to prevent that we need to keep his current dose just in case. Once those cells show up we can start weaning Cyclosporin again, hopefully decreasing his potassium, which will then allow us to decrease his fluids and then finally we can remove the NG tube and get him eating again. The waiting is agonizing. I'm sure later on it will seem like it went by fast, at the moment though time seems to be ticking by so slowly. There are many worse things that could be happening, and that other parents in this situation are dealing with and I need to remember to count my lucky stars. It's just fluid, even though I'm upset over it and losing sleep, that's it, it's not such a big deal and in the grand scheme of things, it is nothing compared to what others could be dealing with.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRdJATPFwsjCObmhutBFTwc6XTRKL9d7U1eOACO-quFR33VbKr3pnUPaS0xjbPtbG8FJ6ehkntsmRmBWlN-3f8CP69BAmLPmHhB3Z3PQu9qBJJEVwOsYYUKRHDN-kM6P4DVV67qe91oOU/s1600/IMG_0316.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1067" data-original-width="1600" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRdJATPFwsjCObmhutBFTwc6XTRKL9d7U1eOACO-quFR33VbKr3pnUPaS0xjbPtbG8FJ6ehkntsmRmBWlN-3f8CP69BAmLPmHhB3Z3PQu9qBJJEVwOsYYUKRHDN-kM6P4DVV67qe91oOU/s320/IMG_0316.JPG" width="320" /></a><br />
September 10th we had a great day with family at the park. Nate's parents, brother and sister came down to visit us for the weekend, his aunt and uncle from Red Deer were also in town, and we had been long overdue to spend time with cousins that live in the south end of Calgary. Everyone gathered at Prince's Island park, and Bash got to see his cousin Sam who we used to go swimming and have play dates with before he got sick. It was a fun day and so good to have everyone together!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwULDlQ4YuK2nMCRlxG84YQ3Q5qxqguoQFmVyrop_fznuYAexMM6EfWSPejAw3YsWk59mkgG_rzd4U2ESTSuEu2b4jo5gcHKwBqID0JRfOB9MtZZQdrWTmocV8Pfi17xE5TxrseUJbMu0/s1600/IMG_1278.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwULDlQ4YuK2nMCRlxG84YQ3Q5qxqguoQFmVyrop_fznuYAexMM6EfWSPejAw3YsWk59mkgG_rzd4U2ESTSuEu2b4jo5gcHKwBqID0JRfOB9MtZZQdrWTmocV8Pfi17xE5TxrseUJbMu0/s200/IMG_1278.JPG" width="150" /></a>On Friday Sept 15th (Day +70) we had a follow up ultrasound to check the status of Sebastian's blood clot that is still in his right leg. We will get the results on Tuesday this week. We had blood drawn in clinic the same day and the nurse could not get blood from one of his lumens, it was blocked. They put in a clot busting drug called TPA and waited 24hrs but it was still blocked. We had a nurse come to our house to check it again today but it is still blocked sadly. The nurse put TPA in the line again and we will check it in clinic again tomorrow. Crossing all fingers and toes that it un-blocks as a blocked line would mean they will need to have surgery to either replace or remove the broviac line completely. He may only need the broviac for another two months if all goes well, but if he needs blood drawn without the line then he would have to get needles in his arm which I can't see him being very thrilled about.<br />
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In other news, Nathan is starting back to work today! He is going back just 3 days a week to start, which is great to ease him back in. It is going to be so strange not having him here with us, and going solo to our clinic visits.Terrahttp://www.blogger.com/profile/14631528262963150914noreply@blogger.com2tag:blogger.com,1999:blog-5770509328661642720.post-23560022165694705452017-09-14T16:25:00.000-07:002017-09-14T16:25:19.169-07:00Week Six<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizkWVhzDa0lEXIicDYQv8uziAH5ozUs8_Mr_oqfqnhxJrP-1ZfODvsQBbUK2kYfWJfZYUEAnJ80v_FOO18g2G1-CS4TBQCg-sd6IIg-5zJxUlEbyO40TVDK7g_K3HFboU3lRshiT9Xpv4/s1600/IMG_0954.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizkWVhzDa0lEXIicDYQv8uziAH5ozUs8_Mr_oqfqnhxJrP-1ZfODvsQBbUK2kYfWJfZYUEAnJ80v_FOO18g2G1-CS4TBQCg-sd6IIg-5zJxUlEbyO40TVDK7g_K3HFboU3lRshiT9Xpv4/s200/IMG_0954.JPG" width="150" /></a><span style="background-color: white; color: #1d2129; font-family: Arial, Helvetica, sans-serif; letter-spacing: -0.12px;">This is the last week of my Facebook posts I had shared to keep everyone in the loop, and this post will get me caught up on our last stay in the hospital.</span><br />
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<span style="background-color: white; color: #1d2129; font-family: Arial, Helvetica, sans-serif; letter-spacing: -0.12px;">On Day +36 (Aug 12th) we had no more fevers and and nothing else showing up in Bash's blood cultures. He's looking and feeling great! We may be able to start short passes again soon. He learned in the last couple days how to clap</span><span style="background-color: white; color: #1d2129; font-family: Arial, Helvetica, sans-serif; letter-spacing: -0.12px;">, show how big he is, flex his muscles</span><span style="background-color: white; color: #1d2129; font-family: Arial, Helvetica, sans-serif; letter-spacing: -0.12px;">, kiss the air, and will sometimes hold up a finger when we ask him how old he is! Smart little guy! He melts my heart.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9Kx_NWQn5DyGuPEyrCSvLQirgJ1X0-GC-kC_g1J0Cc9N1CqiSMEgQKDdQmxud8eJFkoq0lBSHP-Y0Cet46lnnB_o_p-baOPOuwlRfulWFOmz44PMh2SgWT8yOe9_1DNbxKCPmad-aCUs/s1600/IMG_0971.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9Kx_NWQn5DyGuPEyrCSvLQirgJ1X0-GC-kC_g1J0Cc9N1CqiSMEgQKDdQmxud8eJFkoq0lBSHP-Y0Cet46lnnB_o_p-baOPOuwlRfulWFOmz44PMh2SgWT8yOe9_1DNbxKCPmad-aCUs/s200/IMG_0971.JPG" width="150" /></a><span style="font-family: Arial, Helvetica, sans-serif;"><span style="background-color: white; color: #1d2129; letter-spacing: -0.12px;">Day +37 and we got a pass home for a few hours. Doctors determined Bash has a Streptococcus Salivarius infection, most likely caught from himself as it's a normal bug that lives in your body. He's on the right antibiotic and will hopefully be discharged on Aug 25th. Until then we will be given daily passes between his IV antibiotics he gets every 6 hours. He's definitely on the mend and we can't wait to bring him home for good. </span></span><br />
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<span style="background-color: white; color: #1d2129; letter-spacing: -0.12px;">Day +38 was good. We had a 5 hour pass home which was great! Bash didn't nap or sleep well yesterday so was a bit fussy today. His red blood cells are also starting to dip and he may need a transfusion soon. He was switched to another antibiotic that only needs to be given once daily and we should be getting longer passes.</span><span style="background-color: white; color: #1d2129; letter-spacing: -0.12px;"> There was also talk about it being switched from IV to oral, if that happens we may be discharged sooner than the 25th!!</span></span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEho_tsCD8xLiIARjB94mdlGTIci8WAaIP-uUk0hqPggIwc5DJa6LKvnJYJBPcQ9OuhVB8MhB9q5xfeZ8lHjHF9tlO2H89zd12fQAoW11nJaO85W9oA1bgz0iOwx3emKllBNvAEFvUbeDfw/s1600/IMG_1007.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEho_tsCD8xLiIARjB94mdlGTIci8WAaIP-uUk0hqPggIwc5DJa6LKvnJYJBPcQ9OuhVB8MhB9q5xfeZ8lHjHF9tlO2H89zd12fQAoW11nJaO85W9oA1bgz0iOwx3emKllBNvAEFvUbeDfw/s200/IMG_1007.JPG" width="150" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMSSIbPlh3mS7wS5mqopqCIuaHruKSVBb_b2ohrEg-zHa-r_fS7bF3xea3a47yXZi1nc6aCelhUqgKQCNHnXchb82609X4qbpU-POyLumchX0612eZMgxlshVtNLY_4FQexOExzUUb9uY/s1600/IMG_1014.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMSSIbPlh3mS7wS5mqopqCIuaHruKSVBb_b2ohrEg-zHa-r_fS7bF3xea3a47yXZi1nc6aCelhUqgKQCNHnXchb82609X4qbpU-POyLumchX0612eZMgxlshVtNLY_4FQexOExzUUb9uY/s200/IMG_1014.JPG" width="150" /></a><span style="font-family: Arial, Helvetica, sans-serif;"><span style="background-color: white; color: #1d2129; letter-spacing: -0.12px;">Day +39. Bash was very unsettled overnight and tired this morning. The antibiotic he was on causes some GI tract discomfort. He's still teething and his red blood cells are getting low making him cranky too. Thankfully they switched him yesterday to yet another antibiotic that is given once daily over 15 mins and isn't as harsh on his tummy. It was decided not to give blood yet and see if his body will produce RBC's on its own. Oh, and also we were discharged home!!! We will need to go into the hospital once a day for the course of the antibiotics, then just our normal twice a week visits to the outpatient clinic. So happy to be home again! </span></span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNv1HDrPi-HolTTyyKv_sQoV4kOrBgNuGYPYw_6X5KYTzTRa2fkjndi4nBfp88Y9dWDuSBfCP8xRerBg0UsX2OBtYxGL_XC_jrHi2D5McXe4ts6LqCkDy_cUYrpF3imJCtqNbf1QRr9s8/s1600/IMG_1028.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1280" data-original-width="960" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNv1HDrPi-HolTTyyKv_sQoV4kOrBgNuGYPYw_6X5KYTzTRa2fkjndi4nBfp88Y9dWDuSBfCP8xRerBg0UsX2OBtYxGL_XC_jrHi2D5McXe4ts6LqCkDy_cUYrpF3imJCtqNbf1QRr9s8/s200/IMG_1028.JPG" width="150" /></a><span style="font-family: Arial, Helvetica, sans-serif;"><span style="background-color: white; color: #1d2129; letter-spacing: -0.12px;">Day +40! We are still at home, yay! We had to go in to the outpatient clinic for blood work and Bash's daily antibiotic. His RBC's started coming up on their own thankfully. We get a nurse to our house tomorrow for the antibiotic and go back to clinic again Friday for blood work. Bash is a bit off/not himself, and seems to have some tummy issues. Hoping it's just the antibiotics and not the start of Graft vs host disease. You're doing great buddy, we got this.</span></span><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDlik13we8A8EQKaBLF0HMx7hqXPn8GChthhrkc4XRHet2xVQH6PKboJS3-dCPoZNEspZanjin2707bWi-RpywilXBHK04uab2uvibz6nnIZEbm_13ELsgo6ODwVyEBBnxloUqqdwsgDs/s1600/IMG_1050.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1280" data-original-width="960" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDlik13we8A8EQKaBLF0HMx7hqXPn8GChthhrkc4XRHet2xVQH6PKboJS3-dCPoZNEspZanjin2707bWi-RpywilXBHK04uab2uvibz6nnIZEbm_13ELsgo6ODwVyEBBnxloUqqdwsgDs/s200/IMG_1050.JPG" width="150" /></a><span style="font-family: Arial, Helvetica, sans-serif;"><span style="background-color: white; color: #1d2129; letter-spacing: -0.12px;"><br /></span>
<span style="background-color: white; color: #1d2129; letter-spacing: -0.12px;">Day +41. The home care nurse came today to give Bash his antibiotic. It was so awesome not having to go into clinic, it only took 5 mins! He seems to be feeling a bit better and is getting braver about exploring his world. He's starting to get hair and his eyebrows are looking dark </span><span style="background-color: white; color: #1d2129; letter-spacing: -0.12px;">- 'hairy baby' is a side effect of one of his meds. Will be neat to see what he looks like with hair again, it's been so long. We go to clinic tomorrow morning for a checkup, blood tests, and antibiotics. I'm going to start doing my updates on the blog now that we are home, thanks everyone for following along! The thoughts, prayers, and well wishes, the meals, the support, it's all so very appreciated</span><span style="background-color: white; color: #1d2129; letter-spacing: -0.12px;">. He's doing great and we are so proud of him. We love you Sebastian!</span></span>Terrahttp://www.blogger.com/profile/14631528262963150914noreply@blogger.com1tag:blogger.com,1999:blog-5770509328661642720.post-18812978499156533292017-09-01T13:53:00.002-07:002017-09-01T13:53:24.872-07:00Small Detour<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhuZD0FaGn46lfNyL4jlk3X9a5Hd70ZzLZrME6MaQ-eJ0ssQ_rb2Ymr894AOAXPV4T4XnpRptzPN2yVBH_HHfQ2Iy4gCeYyNSfERHgSNUvGxXpnAN-mrdurEd9mQCpP5i5hpS4zsAc79KE/s1600/4D25BBB2-9D35-4E9D-A151-56BC66ED7354.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhuZD0FaGn46lfNyL4jlk3X9a5Hd70ZzLZrME6MaQ-eJ0ssQ_rb2Ymr894AOAXPV4T4XnpRptzPN2yVBH_HHfQ2Iy4gCeYyNSfERHgSNUvGxXpnAN-mrdurEd9mQCpP5i5hpS4zsAc79KE/s200/4D25BBB2-9D35-4E9D-A151-56BC66ED7354.JPG" width="150" /></a><span style="font-family: Arial, Helvetica, sans-serif;">We thought we were home free but our smooth sailing was interrupted on Thursday (Aug 10th) by some questionable fevers. Bash has been cutting his first molar and when he started feeling warm on our first night home we figured it was from teething. Overnight his temp continued to go up and down, never staying over 38.0 for long enough that we needed to call our oncologist. On the morning of the 10th he seemed happy and we decided to wait and see how his day went before calling and raising any unnecessary alarm bells. In the afternoon though he started spiking again and I felt it would be better to be safe than sorry and called our doctor. The doc asked us a lot of questions over the phone - ie, what was his highest temp, was he eating and drinking, still having wet diapers, etc. As he had thrown up his NG tube at bedtime the night before I was also a bit concerned that he wasn't drinking enough. The doctor decided he wanted us to come in and have him checked out to be safe and if anything re-inset the NG so that we could give him fluids if needed. We packed a bag for the hospital just in case and headed in.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9Ix-37njhLn97W4fJ0yETbWodbxz1F0vG1qpz_LzXlQImboRWCp65Kynmg9afoif5Bd6rwtDFqedRLIezEpvpie7B4dZzUTvCs9HNg_jK8za8xIOwmnfghhn3SvOSP_A5jlElEUB1MlM/s1600/IMG_0919.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9Ix-37njhLn97W4fJ0yETbWodbxz1F0vG1qpz_LzXlQImboRWCp65Kynmg9afoif5Bd6rwtDFqedRLIezEpvpie7B4dZzUTvCs9HNg_jK8za8xIOwmnfghhn3SvOSP_A5jlElEUB1MlM/s200/IMG_0919.JPG" width="150" /></a><span style="font-family: Arial, Helvetica, sans-serif;">When the doctors saw him they didn't think he seemed that unwell. His temp was 37.7, all his other vital signs seemed normal, and they decided to give him a fluid bolus since he was a bit mottled looking and they assumed he was a bit dehydrated. They also ordered blood work to check his electrolytes. Since he seemed to be drinking and eating ok we were given the option to wait on a re-insertion of the NG tube which we accepted. While he got his fluids his temp started to spike again and the nurses kept a close watch, but his temp came down again. The day doctor decided if his temp stayed down by the evening, and the night doctor assessed him and we got the all clear then we could go home. The night doctor came and Bash spiked to 38.2 and it was decided to draw blood cultures from each of his lumens on his broviac to test him for infections, start antibiotics as a precaution and admit us for the next 48 hours to see if he was 'cooking' anything. They draw blood from both lumens to determine if he has a line infection or if it is just in his body/blood. If it's a line infection it will only show up from one of the lumens. If this is the case then our doctor recommends removal of his broviac line to prevent a re-infection as the antibiotics may not treat an infection stuck to the inside of the line and he will continually get sick.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhaU3BjmCPtJbHILRM8IHlfeuWJy6QJanaQkeDVmeRFbMG6Eq7KWx17aczrBWRl7kzFwXpUn4Jpki9BFV5Kz9gsmeqSvHsFfHt6h5-KKGhVGESEMgN3CI3PwQWr6_PqQGUcZBFw6Lk9Vrk/s1600/IMG_6726.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="980" data-original-width="1308" height="149" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhaU3BjmCPtJbHILRM8IHlfeuWJy6QJanaQkeDVmeRFbMG6Eq7KWx17aczrBWRl7kzFwXpUn4Jpki9BFV5Kz9gsmeqSvHsFfHt6h5-KKGhVGESEMgN3CI3PwQWr6_PqQGUcZBFw6Lk9Vrk/s200/IMG_6726.JPG" width="200" /></a><span style="font-family: Arial, Helvetica, sans-serif;">At the 7 hour mark Sebastian's cultures came back positive for an infection. He started a secondary antibiotic to hopefully cover him as they weren't sure what he was positive for yet. He had a pretty restless night and his temp in the morning of the 11th was 39.1. He was still happy though and eagerly flashed smiles at his nurses and played happily. He continued to take bottles and food so the NG was unnecessary. We could tell he was fighting something only because he was so tired and slept quite a bit. After that morning fever spike his temps returned to normal. The doctors continued to order blood work over the next few days to check for infection and at the 48 hour mark determined he had <a href="https://en.wikipedia.org/wiki/Streptococcus_salivarius">Streptococcus Salivarius</a> a virus that is normally present in your body and considered harmless in a healthy individual. It showed up from both lines which are good signs it is in his body only and not in a line. His antibiotic orders were changed from <a href="https://en.wikipedia.org/wiki/Piperacillin/tazobactam">Pip-tazo</a> and <a href="https://en.wikipedia.org/wiki/Vancomycin">Vancomycin</a> to <a href="https://en.wikipedia.org/wiki/Ampicillin">Ampicillin</a> and he will get it through his broviac every 6 hours, alternating lines to help kill the bug just in case it is in both lines. The doctors said he can have daily passes in between his med and we should be looking at discharge again on Aug 25th.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgN8BiFAYtpNLfR-f8IEwPFRdPha8jg4AvWwFjO9HeMtNWylAR0Hx5Q-NsKfafXKciTKuIqxSfW0Je_pNFXTfIHOUc_43Scs4lMoM1OKYNwsZ-Q1WuabpxB9Nu93P-t5DFF9qAlVpHcV7o/s1600/output.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1308" data-original-width="980" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgN8BiFAYtpNLfR-f8IEwPFRdPha8jg4AvWwFjO9HeMtNWylAR0Hx5Q-NsKfafXKciTKuIqxSfW0Je_pNFXTfIHOUc_43Scs4lMoM1OKYNwsZ-Q1WuabpxB9Nu93P-t5DFF9qAlVpHcV7o/s200/output.JPG" width="149" /></a><span style="font-family: Arial, Helvetica, sans-serif;">This sucks, but we were expecting something to come up eventually and it is very common to spike fevers this soon after transplant. I'm glad my mommy instincts kicked in and I questioned the fevers as we were on the fence about it just being teething. I felt like I was being silly and over cautious, but doctors reassured me you cannot be too careful at this early stage. If we had waited he could have gotten way worse super fast and we could have been looking at sepsis and even an intensive care unit admission. I learned a valuable lesson from this, to always trust my gut no matter what anyone else thinks. Can't wait to bring our little guy home already! One day home was such a tease!</span><span style="font-family: Arial, Helvetica, sans-serif;"> </span>Terrahttp://www.blogger.com/profile/14631528262963150914noreply@blogger.com0tag:blogger.com,1999:blog-5770509328661642720.post-29395390671055679402017-09-01T13:40:00.001-07:002017-09-01T13:40:21.123-07:00Week Five - A Rollercoaster Week<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj22GAYQ3FFqJWg9j9ZZLGLRTFQCQfqqh0dWEok7CMVyNXVFeJ6RgCaOXehyphenhyphenOG73TNCBOLnuDiP_Qj0vVnXsbuYKTfO1BNjEjB4zqnqwNXzvrsmGzlMMBtG83GenbE3U0XzQUgUoTDkgYQ/s1600/IMG_0808.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj22GAYQ3FFqJWg9j9ZZLGLRTFQCQfqqh0dWEok7CMVyNXVFeJ6RgCaOXehyphenhyphenOG73TNCBOLnuDiP_Qj0vVnXsbuYKTfO1BNjEjB4zqnqwNXzvrsmGzlMMBtG83GenbE3U0XzQUgUoTDkgYQ/s200/IMG_0808.JPG" width="150" /></a><span style="background-color: white; color: #1d2129; font-family: Arial, Helvetica, sans-serif; letter-spacing: -0.12px;">Nearly a month and a half in the hospital. Days have melded together and we are lucky if we know what day of the week it is. Nathan's parents stayed with us this whole time and were such a big help! Nate and I got some much needed 'time off' for ourselves in the afternoons, lunch and dinners made for us every day, and a clean house to come home to in the evening for whoever's 'night off" it was - it was really amazing and we are so lucky to have such great support from them. They ended up going home for some much needed R&R for a few days, and came back the day we were discharged home.</span><br />
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<span style="background-color: white; color: #1d2129; font-family: Arial, Helvetica, sans-serif; letter-spacing: -0.12px;">Day +29 and Bash's counts jumped up again! He started the day out with a rash/hives, doctors didn't think it was a graft vs host rash and Benadryl seemed to do the trick. If it was GVHD Benadryl would have done nothing. We had an afternoon stroll outside after the rain quit and walked around the unit to help with 'cabin fever'.</span><br />
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<span style="background-color: white; color: #1d2129; letter-spacing: -0.12px;">Day +30. How is it we've been in the hospital so long already?! (39 days but who's counting). Today Bash's counts went up again, his absolute neutrophil count was 2700! Normal range is 1500-8000. We had a 2 hour pass and went to a nearby park with uncle Jerrad. Bash started testing us the past few nights with bedtime and not going to sleep. Hoping it's just a phase and not med related. Going to ask the docs 'when can we get outta here?!' tomorrow as we are all ready to be home.</span></span><br />
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<span style="background-color: white; color: #1d2129; letter-spacing: -0.12px;">Day +31. Bash had his last IV medication switched to oral today! The only thing left hooked up to him is his NG feed which he gets 4 times a day, and he is unhooked otherwise. We got a pass and went to the park again. Still fighting bedtime and going to ask tomorrow if this could be a medication side effect. I tried booking a last minute maid service as tackling cleaning the house before Bash comes home seems daunting. I ended up putting a call out to some wonderful friends who were all able to come to my rescue at the last minute to clean our mess! Thank you, thank you, thank you!!! I am so lucky to have such great friends in my life who at the drop of a hat were able to help in a pinch - I'm not worthy and owe you guys big time! Still amazed every day by the love we are surrounded in. You're doing great baby, we love you!</span></span><br />
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<span style="background-color: white; color: #1d2129; letter-spacing: -0.12px;">Day +32. Great day, good numbers, Bash is taking all his meds orally, and he's taking bottles in place of his NG tube feeds! What does this mean? His NG tube might get taken out tomorrow before we are discharged home!!! That's right we all get to sleep in our own beds under the same roof tomorrow! What an amazing rock star kid! And the sleeping at bedtime remains the same, and is unfortunately not med related, just a phase.</span></span><br />
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<span style="background-color: white; color: #1d2129; letter-spacing: -0.12px;">Day +33 and we are home!!! It's been an amazing and surreal day. Sebastian loves being home and having the room and freedom to crawl around and check out all his toys. We had a BBQ and Bash actually went to bed at a decent time. At bedtime he downed his bottle so fast that everything came back up, including his NG tube. Thankfully he is taking bottles, we aren't worried and may not need to put it back in. So happy to all be together! We still have a long road ahead of us but the road to recovery is so far sunny and warm. So much love for you little man</span><span style="background-color: white; color: #1d2129; letter-spacing: -0.12px;"> we are so excited to have you home!</span></span><br />
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<span style="background-color: white; color: #1d2129; letter-spacing: -0.12px;">Sebastian started Day +34 with low grade fevers off and on. We think he is teething and debated whether we needed him looked at. We ended up calling our Oncologist and he wanted him in for a checkup. Bash spiked a temp of 38.2 during checkup and it was decided to admit him and start fluids and antibiotics as a precaution. </span><span style="background-color: white; color: #1d2129; letter-spacing: -0.12px;">Blood cultures were taken and as long as nothing shows up in the next 48 hours we will hopefully be discharged Saturday night or Sunday. Better safe than sorry, just a few more days as inpatient. Being home for less than one day was such a tease. We'll get there buddy! </span></span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;"><span style="background-color: white; color: #1d2129; letter-spacing: -0.12px;">In the hospital for Day +35. Bash continued to spike fevers overnight and temp was 39.4 this morn. His blood cultures showed an infection and docs added another antibiotic to his mix. We will be in the hospital for at least two more weeks for antibiotic treatments. You wouldn't know this kid is sick though, he was flirting with the nurses and even blew a kiss at his doctor </span></span><span style="background-color: white; color: #1d2129; font-family: Arial, Helvetica, sans-serif; letter-spacing: -0.12px;">today!!!</span><span style="background-color: white; color: #1d2129; font-family: Arial, Helvetica, sans-serif; letter-spacing: -0.12px;"> What a little ham! He loves the attention. A small bump, the suns still shining bright though.</span>Terrahttp://www.blogger.com/profile/14631528262963150914noreply@blogger.com0tag:blogger.com,1999:blog-5770509328661642720.post-22653521356185580542017-08-31T22:20:00.002-07:002017-08-31T22:20:37.395-07:00Week Four - An Immune System<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi4ee3ra0pX1D87x7g9jS4z0EWxbl3jAKYOUcyXfj8S17sxr2TZPlyhmN8ybmKKU4_yMqnVCbp4kQNAU7j4UQjGxCqc_yonp2K61xV5-CP8b_vbaCWXXYOeb7nOOo8Vzakfatv70KcQDGU/s1600/IMG_0660.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="901" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi4ee3ra0pX1D87x7g9jS4z0EWxbl3jAKYOUcyXfj8S17sxr2TZPlyhmN8ybmKKU4_yMqnVCbp4kQNAU7j4UQjGxCqc_yonp2K61xV5-CP8b_vbaCWXXYOeb7nOOo8Vzakfatv70KcQDGU/s200/IMG_0660.JPG" width="112" /></a><span style="font-family: Arial, Helvetica, sans-serif;"><span style="background-color: white; color: #1d2129; letter-spacing: -0.12px;">WBC were 0.5 for Day +22! Our doctor thinks we may even see some neutrophils (the WBC's that give you an immune system) tomorrow possibly</span><span style="background-color: white; color: #1d2129; letter-spacing: -0.12px;">. We had to put Bash back on morphine today as Tylenol just wasn't cutting it and he felt so much better. Still got pass outside and enjoyed another beautiful day. Bash found a couple of balls on the playground and hoarded them. He also experienced his first caterpillar! He kept trying to grab it from Nate and squish it. Loving the sunshine baby boy.</span></span><br />
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<span style="background-color: white; color: #1d2129; letter-spacing: -0.12px;">Day +23 and Bash has an absolute neutrophil count (ANC)! This means not only were his white blood cells present at 0.9, but his bone marrow is now producing the fighter white cells that give him an immune system! Our Doctor said we may even transition to home in the next week or two! Amazing news</span><span style="background-color: white; color: #1d2129; letter-spacing: -0.12px;">. Today we had pass outside, Bash is still getting morphine, and seemed to feel kinda crummy and not quite himself, a good indicator that engraftment is happening.</span></span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEir5J7ekGeMLgBT307XQTl1Bma-czwRjynEAzf8aL8eO2PLvKdctZdZGlgYiL4-Uh1ZgDoN7q4DvM3e-o6Abrze8_B6MKvlwE9TUJUS8mXt-cY8kppx51m5MbNTo63l25rr5m4iFvOfZEg/s1600/8198E6E9-46FE-4DEC-A787-DCFBBC0110C4.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEir5J7ekGeMLgBT307XQTl1Bma-czwRjynEAzf8aL8eO2PLvKdctZdZGlgYiL4-Uh1ZgDoN7q4DvM3e-o6Abrze8_B6MKvlwE9TUJUS8mXt-cY8kppx51m5MbNTo63l25rr5m4iFvOfZEg/s200/8198E6E9-46FE-4DEC-A787-DCFBBC0110C4.JPG" width="150" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKbXPVboRQ3EG-UMaWi2wdatTTmI97tm0U29heXfCQiWzV22bQbo5P6F0LcFvb6H-RA5kzGRWQ5KTYdJ2xB8eSB0XOJwNm7Nbr_2TuvEw-C7E2Pd-pda56z_-Zkcsp1Gn5HHpDDcHrgeA/s1600/IMG_0733.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKbXPVboRQ3EG-UMaWi2wdatTTmI97tm0U29heXfCQiWzV22bQbo5P6F0LcFvb6H-RA5kzGRWQ5KTYdJ2xB8eSB0XOJwNm7Nbr_2TuvEw-C7E2Pd-pda56z_-Zkcsp1Gn5HHpDDcHrgeA/s200/IMG_0733.JPG" width="150" /></a><span style="font-family: Arial, Helvetica, sans-serif;">
<span style="background-color: white; color: #1d2129;"><span style="letter-spacing: -0.12px;">Bash wasn't feeling very good for Day +24. His throat was sore and inflamed and his body likely felt achy as it's being taken over by the donor cells. He had lots of cuddles with grandma Lynne and Grandpa Steve which seemed to help. His white blood cells continue to rise, (1.8 and ANC was 700!). Hopefully in the next day or two he will start feeling better. He still had interest in food even with a sore throat, and tried some broccoli today. After putting him to bed in the evening he pulled his NG tube out and it had to be reinserted</span></span><span style="background-color: white; color: #1d2129; letter-spacing: -0.12px;">. This sucked, it was Nate's night on and I got to miss the re-insertion which was nice for me. Your doing so awesome baby, we are beyond proud of you! </span></span><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgkJMR_yxzb6Q2LirJzn6Ufrw617e-iy0muW6IWV_1TwiDlP0biWN2ThcCorV0JTPAJm8dv88rpihmVHFvZVAdl3MOUI0MBThS35IxEJCkxPQr6USGwYlu9rkKGcwPFCtBihpuOkoyrvVU/s1600/IMG_6644.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgkJMR_yxzb6Q2LirJzn6Ufrw617e-iy0muW6IWV_1TwiDlP0biWN2ThcCorV0JTPAJm8dv88rpihmVHFvZVAdl3MOUI0MBThS35IxEJCkxPQr6USGwYlu9rkKGcwPFCtBihpuOkoyrvVU/s200/IMG_6644.JPG" width="150" /></a><span style="font-family: Arial, Helvetica, sans-serif;"><span style="background-color: white; color: #1d2129; letter-spacing: -0.12px;"><br /></span>
<span style="background-color: white; color: #1d2129; letter-spacing: -0.12px;">Day +25 was a much better day. Bash's numbers doubled, WBC 3.2 and ANC 1500! No wonder he felt crappy yesterday - his new cells were working hard. It was rainy and cool so we stayed indoors, left his morphine as is and will try lowering it again tomorrow. Keep it up little man! We love you.</span></span><br />
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<span style="background-color: white; color: #1d2129; letter-spacing: -0.12px;">Not much to report for Day +26. Numbers dropped a bit but were staying steady. We reduced his morphine and also switched his NG feeds from continuous to 5 times a day to be more like a meal. Doctors say he 'officially' engrafted two days ago and we are on the watch now for any graft vs host disease (i.e. rash, vomiting, diarrhea). We played bingo today over a walkie talkie, Bash kept changing the channels and we missed a few numbers. Everyone wins though and Bash picked out a giant crayon filled with 80 blocks as a prize! Let the sun shine in!</span></span><br />
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<span style="background-color: white; color: #1d2129; letter-spacing: -0.12px;">Day +27 was uneventful. Bash is tolerating his feeds well and seems to have little pain. Plan is to stop morphine tomorrow and see how he feels. I managed to convince the doctors to only do blood pressures when he's awake so he can get better sleeps overnight, yay! Keep it up buddy! </span></span><br />
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<span style="background-color: white; color: #1d2129; letter-spacing: -0.12px;">Another good day in the books for Day +28. Counts were low for red blood cells but his other numbers were stable. He had a blood transfusion for the low RBC's and then he was unhooked from all his IV's. We stopped the morphine and he's doing so great. We went on a pass where we walked around the university grounds and enjoyed the weather, then gave him his nightly bath without all his IV lines in the way! He's feeling good and his fun and goofy personality is showing. Love this kid.</span></span><br />
Terrahttp://www.blogger.com/profile/14631528262963150914noreply@blogger.com1tag:blogger.com,1999:blog-5770509328661642720.post-30646782217065094122017-08-31T21:46:00.001-07:002017-08-31T21:46:16.476-07:00Week Three - Engraftment!<span style="background-color: white; color: #1d2129; font-family: "arial" , "helvetica" , sans-serif; letter-spacing: -0.12px;">Week three and time started to drag on and being at the hospital started to <i>really</i> wear on us. The staff at Childrens are really great, but when you have a baby that is such a light sleeper, and there is a constant barrage of people coming in and out of the room interrupting naps and night sleeps, it gets old fast. I never felt alone, even overnight the nurses would check on him every couple hours as well as bring meds in and do vital sign checks. I forgot to mention in my last posts that Nate started taking night shifts after Bash got his NG tube inserted (about time!). We would switch off every two days, it was glorious to sleep in my own bed and be able to get a full 8 hours without interruptions! </span><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJF2aCsTFmR3Ir43gL5sUscMFMY5Cn961tz7kEGYhhBYLyvS-bR2ccfH-3UrVcX6Fv5ePw8oQFrqv6M_qvsWyBGLPLvcBJ97nMbm6-EARtW1NCvfVV1speim0sEvALbUGKx_YNRO_cy3E/s1600/IMG_0475.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1280" data-original-width="960" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJF2aCsTFmR3Ir43gL5sUscMFMY5Cn961tz7kEGYhhBYLyvS-bR2ccfH-3UrVcX6Fv5ePw8oQFrqv6M_qvsWyBGLPLvcBJ97nMbm6-EARtW1NCvfVV1speim0sEvALbUGKx_YNRO_cy3E/s200/IMG_0475.JPG" width="150" /></a><span style="background-color: white; color: #1d2129; font-family: "arial" , "helvetica" , sans-serif; letter-spacing: -0.12px;"><br /></span>
<span style="background-color: white; color: #1d2129; font-family: "arial" , "helvetica" , sans-serif; letter-spacing: -0.12px;">Day +15. Bash slept in until 9am! We went outside for lunch as the smoke in the air was clear today. Counts were starting to get low again and he may need platelets soon. He had a dressing change on his broviac site. One puke right before bed, otherwise a great day. This was also the day that news came out about two infants being successfully treated with engineered T-cells from another person, which is amazing! Someday, hopefully soon, we won't have to put poison into our babies to kill cancer. </span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjotC9CJIe4N7xXYkz-2oTd_6x2RkzhivU6u0L-7JDU9DG-2CQGj3oROgSEcs0LNQI3ttvJUzWiFd4puJr17FO-vbYT5296J-KwkbY5qsLuNKkiOvUJRRCbQFflmo2vAWEwMWNVS0VhqRY/s1600/IMG_0513.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="1280" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjotC9CJIe4N7xXYkz-2oTd_6x2RkzhivU6u0L-7JDU9DG-2CQGj3oROgSEcs0LNQI3ttvJUzWiFd4puJr17FO-vbYT5296J-KwkbY5qsLuNKkiOvUJRRCbQFflmo2vAWEwMWNVS0VhqRY/s200/IMG_0513.JPG" width="200" /></a><span style="font-family: "arial" , "helvetica" , sans-serif;">
<span style="background-color: white; color: #1d2129; letter-spacing: -0.12px;">More of the same for Day +16. Sleep ins, long naps, and one small puke. Pass outside for lunch in the park. Counts were low but no blood products yet. Happy guy for the most part, tired and got cranky fast since his counts were low. NG tube was still in and working great, Yay! So much love for and from this kid! He amazes me. </span></span><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEig5Zlm1XDVN4TVoOat_l6lkpQotLhpbKjH6o-Q9ndWLSOGDYZlz3gcUA2JmBcP8QldtmUq9OXPaL6_AIVd6ueMsgvb7kcEus9u-HGXi5oh62lAWWGXOQlK7dpNVPNUHxDOzvir-kN1uMc/s1600/IMG_0525.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEig5Zlm1XDVN4TVoOat_l6lkpQotLhpbKjH6o-Q9ndWLSOGDYZlz3gcUA2JmBcP8QldtmUq9OXPaL6_AIVd6ueMsgvb7kcEus9u-HGXi5oh62lAWWGXOQlK7dpNVPNUHxDOzvir-kN1uMc/s200/IMG_0525.JPG" width="150" /></a><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="background-color: white; color: #1d2129; letter-spacing: -0.12px;"><br /></span>
<span style="background-color: white; color: #1d2129; letter-spacing: -0.12px;">Day +17. Still at zero. Blood transfusions will happen tomorrow for low red blood cells and platelets. Bash seemed to be feeling better today and did lots of talking and playing. Thinking of decreasing his pain meds tomorrow to see how he does, hopefully we can wean him off. Bash got a book from child life today about Minnie Mouse and he loved it! This kid loves anything Mickey... I foresee a trip to Disney in our future. He also started sharing his food today, wanting us to have a bite between his.</span></span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEid24vlNEE0lQ4MI71bUjBwfZ5WDhpFRcExrE0mTP1PdUqLFH5rRJH4I94ZWiZxGfFguCgFP0Uslvc1XDq1jo4SBPagb1nbTSwwWo1Begv4eOq9rnjHUSGMMveaW_m0vy-ifZsafKQ6s-c/s1600/IMG_0528.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEid24vlNEE0lQ4MI71bUjBwfZ5WDhpFRcExrE0mTP1PdUqLFH5rRJH4I94ZWiZxGfFguCgFP0Uslvc1XDq1jo4SBPagb1nbTSwwWo1Begv4eOq9rnjHUSGMMveaW_m0vy-ifZsafKQ6s-c/s200/IMG_0528.JPG" width="150" /></a><span style="font-family: "arial" , "helvetica" , sans-serif;">
<span style="background-color: white; color: #1d2129; letter-spacing: -0.12px;">Day +18 was a good day. Sebastian seemed a lot more himself. He got red blood cells and platelets, we decreased his morphine and can probably stop it tomorrow depending how the night goes. He was drinking and had some pizza, had loads of energy, and was talking up a storm. So good to see him feeling better! My superhero.</span></span><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwd_dijXK-C9gvfrxoOFdsV1_MC-_ExL_0_haJbWntf2zP_vAfq1V_LU8U72zd1zUHBsUEdh5inYJiLZZwkpjk1zSgdLHPRHfrUsrG7e9VTvrAHDQNJ75bppNUUjgxhfO1B_hWIm3kPSA/s1600/IMG_0587.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1280" data-original-width="960" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwd_dijXK-C9gvfrxoOFdsV1_MC-_ExL_0_haJbWntf2zP_vAfq1V_LU8U72zd1zUHBsUEdh5inYJiLZZwkpjk1zSgdLHPRHfrUsrG7e9VTvrAHDQNJ75bppNUUjgxhfO1B_hWIm3kPSA/s200/IMG_0587.JPG" width="150" /></a><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="background-color: white; color: #1d2129; letter-spacing: -0.12px;"><br /></span>
<span style="background-color: white; color: #1d2129; letter-spacing: -0.12px;">Day +19. We got a two hour pass and went to a park across from the hospital today, it was hot and we enjoyed sitting in the shade under some huge trees. Bash was feeling pretty good. We tried no morphine for the afternoon but by bedtime he was fussy. He skipped his nap and did not want to go to bed in the evening. Had loads of energy probably from the blood he got yesterday.</span></span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjXUxHaWZWI4kMjzzYAfwKMq0x_fACvw8nBJyy0B7yXN8IJZhZcT3bIDNBNWrbzNfvj-QByPcb-QWWycLaerKcEy6ItJqI6ty-pIRd_nj2in2vxt1wD-xceBbCVVoenm0citbih7pvd6k/s1600/B7262AFC-43C1-418E-9951-E15F340C5795.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjXUxHaWZWI4kMjzzYAfwKMq0x_fACvw8nBJyy0B7yXN8IJZhZcT3bIDNBNWrbzNfvj-QByPcb-QWWycLaerKcEy6ItJqI6ty-pIRd_nj2in2vxt1wD-xceBbCVVoenm0citbih7pvd6k/s200/B7262AFC-43C1-418E-9951-E15F340C5795.JPG" width="150" /></a><span style="font-family: "arial" , "helvetica" , sans-serif;">
<span style="background-color: white; color: #1d2129; letter-spacing: -0.12px;">Day +20 and we have white blood cells!!! They are very minimal and his numbers may go up and down but doctors said they believe we have started engraftment!!!! Finally! Sebastian has been feeling great and his little goofy personality is out in full. He had a good sleep overnight, woke happy, played, talked, and had us laughing all day. Still not quite weaned off the morphine completely. Had a visit from music therapy today too. Love you Bash </span><span class="_5mfr _47e3" style="background-color: white; color: #1d2129; letter-spacing: -0.12px; line-height: 0; margin: 0px 1px; vertical-align: middle;"><img alt="" class="img" height="16" role="presentation" src="https://www.facebook.com/images/emoji.php/v9/f6c/1/16/2764.png" style="border: 0px; vertical-align: -3px;" width="16" /><span class="_7oe" style="display: inline-block; width: 0px;">❤️</span></span><span style="background-color: white; color: #1d2129; letter-spacing: -0.12px;"> Bring on the sunshine! </span></span><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7taTS2_wX2U_SGm8RAil8Q0GdPVflbW7hFmy5aA-c4RST2kAQE4w7XSrag8mNFHY1zx3w2LNCG4w9LfYAPlXlSfOrX6X6mXiTONQfMnhqIMgAzoH0J1nMrpkGOa2asqfQ5hUF2vzBMfc/s1600/IMG_0636.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7taTS2_wX2U_SGm8RAil8Q0GdPVflbW7hFmy5aA-c4RST2kAQE4w7XSrag8mNFHY1zx3w2LNCG4w9LfYAPlXlSfOrX6X6mXiTONQfMnhqIMgAzoH0J1nMrpkGOa2asqfQ5hUF2vzBMfc/s200/IMG_0636.JPG" width="150" /></a><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="background-color: white; color: #1d2129; letter-spacing: -0.12px;"><br /></span>
<span style="background-color: white; color: #1d2129; letter-spacing: -0.12px;">Day +21 and Bash's white blood cells rose to 0.3! We weaned him off morphine for the day, gave Tylenol at bedtime, and hopefully won't need it overnight. We had a pass outside for lunch and got to keep him off all his IV lines and NG feed for the afternoon. The freedom from all those lines is so awesome, you would be amazed how fast he can get them all tangled up. After our pass outside we had a visit from some of the Stampeders! Bash got a signed football and we got a picture with them. </span></span><span style="background-color: white; color: #1d2129; font-family: arial, helvetica, sans-serif; letter-spacing: -0.12px;">Keep it up bud! </span>Terrahttp://www.blogger.com/profile/14631528262963150914noreply@blogger.com0tag:blogger.com,1999:blog-5770509328661642720.post-56281742453898877052017-08-26T23:17:00.001-07:002017-08-26T23:17:36.966-07:00Week Two Post Transplant<span style="background-color: white; color: #1d2129; font-family: Arial, Helvetica, sans-serif; letter-spacing: -0.12px;">Week two came fast and and Bash continued to do well. Doctors were impressed with how happy he was still and how well he was doing considering his throat/body seemed to be so sore. He never seems to outwardly show his pain, it showed up more so from his vital signs - heart rate and blood pressures trending high. I've posted my Facebook posts from week two below and added a few things I can remember here and there. It's beginning to become a blur of days.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJzjZk-waIjeAT-py67hncStGhRRCE_rTbG9mPWVpWMmRmdw0RFmOfcIg5rI78U9I4dgDYPaqQAzIvPF20qpHXPxjaBVjAXKqDwmq5Ezumj9frPLa7OMm7C1WBzdW5LvRfQsSIWqdg2Co/s1600/IMG_0357.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJzjZk-waIjeAT-py67hncStGhRRCE_rTbG9mPWVpWMmRmdw0RFmOfcIg5rI78U9I4dgDYPaqQAzIvPF20qpHXPxjaBVjAXKqDwmq5Ezumj9frPLa7OMm7C1WBzdW5LvRfQsSIWqdg2Co/s200/IMG_0357.JPG" width="200" /></a><span style="background-color: white; color: #1d2129; font-family: Arial, Helvetica, sans-serif; letter-spacing: -0.12px;">Day +8. Had a pretty good day, no throw ups or blow outs. We got a 3hr pass and we walked around the university grounds with the Knutson grandparents and showed them the olympic oval where they still do speed skating. Bash was fussy and not himself once we returned and we think he was having pain - not sure where, possibly bone pain and/or throat. We increased his IV pain meds to see if he felt better overnight and in the morning. Not much else to report, waiting for those cells to engraft... any day now. Love my little mister.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigplagUCKSDJ5vVxGupRW2n9rwnDTVMMH1f5GPmCDBU5b7XCNKWa4_R7VJ9V2PobTfbvhAZbyU8XOTIJpZin5QMp3MEqtntcdRn_TLSSbkhaC04raSkCNjhrCc4B3L6_seOGHQMGeLzBA/s1600/IMG_6490.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigplagUCKSDJ5vVxGupRW2n9rwnDTVMMH1f5GPmCDBU5b7XCNKWa4_R7VJ9V2PobTfbvhAZbyU8XOTIJpZin5QMp3MEqtntcdRn_TLSSbkhaC04raSkCNjhrCc4B3L6_seOGHQMGeLzBA/s200/IMG_6490.JPG" width="150" /></a><span style="font-family: Arial, Helvetica, sans-serif;">
<span style="background-color: white; color: #1d2129; letter-spacing: -0.12px;">Day +9 started with two huge blowouts, IV lines covered in poo and needing to be changed out, then a bath, a late nap and finally some much needed platelets as his counts were getting low. We kept Bash on IV morphine today for pain and it seemed to help him feel better. We moved rooms as his cultures from his fever last week showed nothing and they took us off isolation! I think we have been in almost every room on the unit now. In the evening the hospital put out a code grey - an air quality advisory - it was super smoky from the BC fires. We could really smell it in the air in the hospital.</span></span><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgnyNJpnmasQe3CVrDTOTUxYltWezgU2YzuYGdNYL-hbKYC864FfbZeswqzmYXed02GRfQIxX95JYDUSoD68i433DrQt2_IpSN3QYpgVIP8FuuURYVRdYRNPt7cf1gyqlWF6x8D4kXyjro/s1600/IMG_0381.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgnyNJpnmasQe3CVrDTOTUxYltWezgU2YzuYGdNYL-hbKYC864FfbZeswqzmYXed02GRfQIxX95JYDUSoD68i433DrQt2_IpSN3QYpgVIP8FuuURYVRdYRNPt7cf1gyqlWF6x8D4kXyjro/s200/IMG_0381.JPG" width="150" /></a><span style="font-family: Arial, Helvetica, sans-serif;"><span style="background-color: white; color: #1d2129; letter-spacing: -0.12px;"><br /></span>
<span style="background-color: white; color: #1d2129; letter-spacing: -0.12px;">Not much to report for Day +10. Blood counts were stable, still waiting for Bash's white blood cells to show up which will tell us he is starting to engraft. Kept him on IV pain meds again and he was his happy self. Still smokey out so we stayed inside. Bash enjoyed playing with grandma and grandpa K who brought some new toys to entertain him. It was great having the grandparents around as Nate and I could spend an hour or two together outside of the hospital and I was able to get home to shower and nap in my own bed.</span></span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhkqJCzkQUGxCuYpU-jU1jsL5DKIX6NgGacansdqho0bAPMDNuMj63WgiFkqtvtBnRIVntItqrYfVNDkp2n-qlNOxRW80L6CVVaw7EBzt-VFdnJmkfglEJYk5zLPnoD9csBu5etgMxwwk/s1600/IMG_2278.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhkqJCzkQUGxCuYpU-jU1jsL5DKIX6NgGacansdqho0bAPMDNuMj63WgiFkqtvtBnRIVntItqrYfVNDkp2n-qlNOxRW80L6CVVaw7EBzt-VFdnJmkfglEJYk5zLPnoD9csBu5etgMxwwk/s200/IMG_2278.JPG" width="150" /></a><span style="font-family: Arial, Helvetica, sans-serif;">
<span style="background-color: white; color: #1d2129; letter-spacing: -0.12px;">Day +11 was just an ok day. We started with a huge blowout again that got poop on all the IV lines and they had to all be changed. Bash was pretty tired and slept a lot. He had a big puke in the afternoon and mostly just wanted to be cuddled today. Still at zero immunity. Have him on IV morphine as his throat seems to still be bugging him. Hoping for a better day tomorrow. We got this buddy, we all love you so much!</span></span><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhoFYo0ZEf_cqHCbaHnxAWjRsZ-LIlPYHA94rMOxOFdmszjNl5TjJnxSA6hranxCyNmcy7tYzBS6S3Xt8RpwoQGDx_ec4ssHcTQlbG4qsqxkpQTLLSIok_Fr_tAq6r6t4ejM_XTR4ABIVk/s1600/IMG_0433.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="960" data-original-width="1280" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhoFYo0ZEf_cqHCbaHnxAWjRsZ-LIlPYHA94rMOxOFdmszjNl5TjJnxSA6hranxCyNmcy7tYzBS6S3Xt8RpwoQGDx_ec4ssHcTQlbG4qsqxkpQTLLSIok_Fr_tAq6r6t4ejM_XTR4ABIVk/s200/IMG_0433.JPG" width="200" /></a><span style="font-family: Arial, Helvetica, sans-serif;"><span style="background-color: white; color: #1d2129; letter-spacing: -0.12px;"><br /></span>
<span style="background-color: white; color: #1d2129; letter-spacing: -0.12px;">Day +12. Bash was very tired and slept in until 9am instead of his usual 7am wake up. He had lots of naps too and was pretty cranky. His red blood cells were low (hence the lethargy) and he had a transfusion which perked him right up. Still no white blood cells, and our BMT doctor had a great analogy today... He said engraftment is like waiting for the sun to come out and light up the dark. I like that. Bring on the sunshine.</span></span><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEglh_bYn53ahABl0c2tY6doAKvknOO8RkXO5hjV0k1WDAi02jmAbVju6KzCeI9WSdHaHG9dIXrNtJRVbVGfE2UHH-mYTC57u-XTzf-tXdJZUwF8ht09wfUf9ZJ3NuFPupvGYWzqcm97Kbs/s1600/IMG_6512.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1382" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEglh_bYn53ahABl0c2tY6doAKvknOO8RkXO5hjV0k1WDAi02jmAbVju6KzCeI9WSdHaHG9dIXrNtJRVbVGfE2UHH-mYTC57u-XTzf-tXdJZUwF8ht09wfUf9ZJ3NuFPupvGYWzqcm97Kbs/s200/IMG_6512.JPG" width="172" /></a><span style="font-family: Arial, Helvetica, sans-serif;"><span style="background-color: white; color: #1d2129; letter-spacing: -0.12px;"><br /></span><span style="background-color: white; color: #1d2129; letter-spacing: -0.12px;">Day +13. Bash was happier today with a bit more energy - thanks red blood cells. He got platelets again for low numbers, and his red blood cells were better. Had a big throw up overnight (had to change me, him, and the crib bedding) and then threw up again in the morning, we gave him gravol which helps. Nurses and doctors said he is doing awesome! Keep it up buddy!</span></span><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkryQQ09gLdSNG8UDClNVThj0YQPAFb_1aecOpRBwmS_EqBAyMkuDwhdAQhbvaIoj7K-VcuKt3f63o2vgEdEB-Fdke-Fe9-VUNsnUzF6bF5Tha0hIfmbOGLPNLtmvWMWMMuD9U0gUfY6U/s1600/IMG_0447.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkryQQ09gLdSNG8UDClNVThj0YQPAFb_1aecOpRBwmS_EqBAyMkuDwhdAQhbvaIoj7K-VcuKt3f63o2vgEdEB-Fdke-Fe9-VUNsnUzF6bF5Tha0hIfmbOGLPNLtmvWMWMMuD9U0gUfY6U/s200/IMG_0447.JPG" width="150" /></a><span style="font-family: Arial, Helvetica, sans-serif;"><span style="background-color: white; color: #1d2129; letter-spacing: -0.12px;"><br /></span>
<span style="background-color: white; color: #1d2129; letter-spacing: -0.12px;">Day +14. We have been in the hospital 3 weeks now. Bash vomited twice this morning and his NG tube got blocked. Nurses tried everything and were ready to pull it out, but Nathan googled how to unblock NG's and his method worked - Hero of the day! This was great because then we didn't have to re-insert it and cause trauma to his sore throat. Bash then had a visit from the music therapist (always a favorite), had some long naps, even tried a bit of food today. I think I can see some light on the horizon (this was because there was a small 'blip' of white blood cells this day! I didn't want to jynx it by posting and getting everyone excited, and the next day they were down again). </span><span class="_5mfr _47e3" style="background-color: white; color: #1d2129; letter-spacing: -0.12px; line-height: 0; margin: 0px 1px; vertical-align: middle;"><img alt="" class="img" height="16" role="presentation" src="https://www.facebook.com/images/emoji.php/v9/f94/1/16/1f49a.png" style="border: 0px; vertical-align: -3px;" width="16" /><span class="_7oe" style="display: inline-block; width: 0px;">💚</span></span><span style="background-color: white; color: #1d2129; letter-spacing: -0.12px;"> Love you baby boy!</span></span>Terrahttp://www.blogger.com/profile/14631528262963150914noreply@blogger.com0tag:blogger.com,1999:blog-5770509328661642720.post-67408484934146418832017-08-24T22:39:00.001-07:002017-08-24T22:39:02.619-07:00Week One Post Transplant<span style="background-color: white; color: #1d2129; font-family: Arial, Helvetica, sans-serif; letter-spacing: -0.12px;"><span style="color: black; letter-spacing: normal;">There seem to be a lot of things that have happened in the days after transplant. Although not much time has passed, we are 'only' day +48 today, it feels like forever. I don't want to do a whole recap of all those days at the moment - I'm overwhelmed just thinking of it, but Nathan is making me...lol. I had originally written out a<i> very</i> short draft of the 'important moments' and was about to post it and he said it was a cop out, and he's right. If I post a summary of our transplant days just to give an update to get 'caught up', I will never get around to writing it all down. And I want Bash to be able to read it all one day. Heck, I will want to read it all again one day I'm sure. So here goes... Our first week, reminiscent of my Facebook posts to 'help' me through.</span></span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjND7VeKg0LQFXgOrJu_TMbBiGxCnHaohoNHfNN_AVOfueH87OrHSZ52ewD3czQzUy2ZD00k-sxtUQtMyUgbwhIcQwjQvTN4ziExM4Z0L5AaFgwWD8uzkVxC1MTSxbFgFAEUIhBnDQvx8Y/s1600/IMG_0213.PNG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><span style="font-family: Arial, Helvetica, sans-serif;"><img border="0" data-original-height="1136" data-original-width="640" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjND7VeKg0LQFXgOrJu_TMbBiGxCnHaohoNHfNN_AVOfueH87OrHSZ52ewD3czQzUy2ZD00k-sxtUQtMyUgbwhIcQwjQvTN4ziExM4Z0L5AaFgwWD8uzkVxC1MTSxbFgFAEUIhBnDQvx8Y/s200/IMG_0213.PNG" width="112" /></span></a><span style="background-color: white; color: #1d2129; font-family: Arial, Helvetica, sans-serif; letter-spacing: -0.12px;">Day +1. Bash got a nasogastric tube inserted so we could feed him and give him medications more easily. The nurse <i>only</i> had to try twice to insert it. He was upset, screamed bloody murder, but he got over it fairly quickly. I thought he would pull it out right away but he didn't! We used less tape on his face this time and left it alone so as not to draw more attention to it and he seemed to have forgot it was there after 5 mins! He's started to get sore white looking spots in his mouth and we were told we may need to start pain control drugs soon. At 2 in the morning - great timing guys thanks - he got a chemo drug 'pulse' (Methotrexate) to help to continue suppressing his immune system and help the new bone marrow set up shop. It's given on day +1, +3, and +7, and is a much smaller dose than he has received in the past. He's doing well and our transplant doctor is impressed with him. Such a happy kid!</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiahN3GzqfuwdrWGDdCT64zBgRoY2u1EZIe3Cz-cX5PcZGf35UYsvAyRGbZ8eZ0CZIQi27T4OmWArbJLi6qQKMZxi99SEe9w5Q6IjVRdRh9DmOn3i1naP8lsX-mu85EaPikEBREe7GaRBA/s1600/IMG_0247.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><span style="font-family: Arial, Helvetica, sans-serif;"><img border="0" data-original-height="1600" data-original-width="1200" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiahN3GzqfuwdrWGDdCT64zBgRoY2u1EZIe3Cz-cX5PcZGf35UYsvAyRGbZ8eZ0CZIQi27T4OmWArbJLi6qQKMZxi99SEe9w5Q6IjVRdRh9DmOn3i1naP8lsX-mu85EaPikEBREe7GaRBA/s200/IMG_0247.JPG" width="150" /></span></a><span style="background-color: white; color: #1d2129; font-family: Arial, Helvetica, sans-serif; letter-spacing: -0.12px;">On day +2 we got an hour pass and went outside to the park and played some mini golf! We were very surprised to be 'let out' as we figured Bash would be feeling quite terrible and since he has no immune system, on lock down for the next month at least. His doctors were happy he was feeling so well, and I think everyone thought by today he would need continuous pain control but he only needed Tylenol here and there. Bash had not pulled out the NG tube which was amazing, and even though he wasn't eating we could give him nutrition through the tube and not worry about him losing weight or being on IV nutrition which can cause strain on his liver that is already taxed with the transplant and drugs. His energy remained up, and he also said his first words today! - Dad and Ball! Stinker was supposed to say mom first! Love our little superhero.</span><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjz4MOKyDd9c1EFfzYemVDcY77sm12Bz5HaSQDULQGt_Bs35LlRUAcuSfiKo4_IRoPmUc4YRk4ER9zYtqIgWJ2v0HHzBdR9Kf-JjYyF_kOayBL8aSFx1UcS-DrtkxmYUXpD-4d0EtC0FQA/s1600/IMG_0284.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><span style="font-family: Arial, Helvetica, sans-serif;"><img border="0" data-original-height="1200" data-original-width="1600" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjz4MOKyDd9c1EFfzYemVDcY77sm12Bz5HaSQDULQGt_Bs35LlRUAcuSfiKo4_IRoPmUc4YRk4ER9zYtqIgWJ2v0HHzBdR9Kf-JjYyF_kOayBL8aSFx1UcS-DrtkxmYUXpD-4d0EtC0FQA/s200/IMG_0284.JPG" width="200" /></span></a><span style="font-family: Arial, Helvetica, sans-serif;"><span style="color: #1d2129;"><span style="letter-spacing: -0.12px;"><br /></span></span><span style="background-color: white; color: #1d2129; letter-spacing: -0.12px;">Day +3 and Bash had a pretty uneventful day, no pass outside as it was rainy, but we played lots in our room. His platelet count dropped quite a bit in the last few days and he will need a platelet infusion soon. He got another Methotrexate pulse, again late at night, the timing in the hospital for things really sucks sometimes, especially with a baby who wakes so easily. NG tube still in which is awesome. Love you bud! Your doing great.</span></span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhw2_4GrBq1vfLVeKyBuCjIgpLxoox1LAOt-xIa9o1NhaJL0fB-vKaJJTIQDC81NZSKkO0gIY-simGlT9mwkeoxbfVxYuGjZB_uUwQ_8WeK_6fZf0m3GA8YVpLwJUFurnQC9FaXV_Mj1Rs/s1600/IMG_0288.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><span style="font-family: Arial, Helvetica, sans-serif;"><img border="0" data-original-height="1600" data-original-width="1200" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhw2_4GrBq1vfLVeKyBuCjIgpLxoox1LAOt-xIa9o1NhaJL0fB-vKaJJTIQDC81NZSKkO0gIY-simGlT9mwkeoxbfVxYuGjZB_uUwQ_8WeK_6fZf0m3GA8YVpLwJUFurnQC9FaXV_Mj1Rs/s200/IMG_0288.JPG" width="150" /></span></a><span style="font-family: Arial, Helvetica, sans-serif;"><span style="background-color: white; color: #1d2129; letter-spacing: -0.12px;">Poor Bash started Day +4 with a low grade fever and a big vomit all over the parent bed. Mucositis is showing up in his mouth so doctors put him on a continuous morphine infusion for his pain. He had a button we could push to give him extra too if we thought he needed it. His fever started spiking in the afternoon and he didn't want to play at all, just cuddle and sleep. His platelets and red blood cells were low and we expected them to completely tank by the next day, he would more than likely need both infused in the morning. Blood was drawn from each of his lines from the broviac to test for an infection antibiotics were started, and we were put on isolation - this meant the nurses would gown and glove up before coming in the room. He got Tylenol around the clock to help the fevers. The first road bump sucked but was to be expected. He's a fighter this one, we love you so much bud.</span><span style="background-color: white; color: #1d2129; letter-spacing: -0.12px;"> We got this.</span></span><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgx7Qom14wtSXudXaSs1_oWsIb9tKn7BKU4eGTqAo_Aq8iPufOCIzQIYi8xJTvZAvVU20oRN_yjjqSt0tJy80cVu0fGJskLC6Fn9a_nu5nops2Oly5iSKKLvtzyj0VwtooEepHvMBfuriM/s1600/IMG_6473.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><span style="font-family: Arial, Helvetica, sans-serif;"><img border="0" data-original-height="1600" data-original-width="1200" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgx7Qom14wtSXudXaSs1_oWsIb9tKn7BKU4eGTqAo_Aq8iPufOCIzQIYi8xJTvZAvVU20oRN_yjjqSt0tJy80cVu0fGJskLC6Fn9a_nu5nops2Oly5iSKKLvtzyj0VwtooEepHvMBfuriM/s200/IMG_6473.JPG" width="150" /></span></a><span style="font-family: Arial, Helvetica, sans-serif;"><span style="color: #1d2129;"><span style="letter-spacing: -0.12px;"><br /></span></span><span style="background-color: white; color: #1d2129; letter-spacing: -0.12px;">Day +5. Bash's fever broke just after midnight. He slept well and woke up a happier guy. He was still a tad nauseated in the morn and puked all over the day bed again, then proceeded to play in it lol. His platelets and red blood cells were both low and he got infusions which perked him right up. Wednesday is pizza night at ACH and he even had a bite or two! Then ice cream for dessert.</span><span style="background-color: white; color: #1d2129; letter-spacing: -0.12px;"> We are so glad he's feeling better! </span></span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqauQAA6aFePNc234UObekvJeNDq0ETLLJdDFydJJN8TjatprpGIQCybjsgZSo-udWx3YFYz4Y9MSzGz7rb5aojbYnOx-iraImMbMgIjaBB0qNY-CiX7HpXRay26fT8Pj-xWfOhKya3HU/s1600/IMG_0303.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><span style="font-family: Arial, Helvetica, sans-serif;"><img border="0" data-original-height="1600" data-original-width="1200" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqauQAA6aFePNc234UObekvJeNDq0ETLLJdDFydJJN8TjatprpGIQCybjsgZSo-udWx3YFYz4Y9MSzGz7rb5aojbYnOx-iraImMbMgIjaBB0qNY-CiX7HpXRay26fT8Pj-xWfOhKya3HU/s200/IMG_0303.JPG" width="150" /></span></a><span style="background-color: white; color: #1d2129; font-family: Arial, Helvetica, sans-serif; letter-spacing: -0.12px;">Day +6 and Bash is doing well. He had a huge diaper blowout this morning and got all his IV lines covered in poop! It was so stressful and I was super worried he would get an infection from the poop getting into his IV lines. After cleaning him up and changing out all his lines, he got platelets again as they were still very low. We held his enoxaparin shot too as we don't want to cause bleeding - he still gets this as a prevention of blood clots forming in his broviac and because he still has a blood clot in his leg from his very first femoral line he received in Saskatoon when he started treatment. We dropped his pain medications down as he didn't seem to need as much. Then we got an hour pass outside and enjoyed the +29 weather. The sunshine felt so good and it was so awesome to get out of the stuffy room for a bit! Keep it up bud! Love you.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYnL_a6JQy34aTKb-ntnQooMVRxvo00xsNksUwCWx319s3oRCZ3in5NR9tL9S3XSEVpQ7gJUL_1FBzAIQYv4XQiQy03WMNF6ddwAATokrsxLw8cuGQXFJex6uLScFOaf_-kYrNJghsa1o/s1600/IMG_0325.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYnL_a6JQy34aTKb-ntnQooMVRxvo00xsNksUwCWx319s3oRCZ3in5NR9tL9S3XSEVpQ7gJUL_1FBzAIQYv4XQiQy03WMNF6ddwAATokrsxLw8cuGQXFJex6uLScFOaf_-kYrNJghsa1o/s200/IMG_0325.JPG" width="150" /></a><span style="font-family: Arial, Helvetica, sans-serif;"><span style="background-color: white; color: #1d2129; letter-spacing: -0.12px;">A week since transplant! Day +7 started with another diaper blowout, I believe all lines had to be changed again, but no pukes</span><span style="background-color: white; color: #1d2129; letter-spacing: -0.12px;">. We got a 2 hour pass and went outside for lunch. Bash got a Methotrexate pulse again to help continue to suppress his immune system. Platelets were low but no need for an infusion. Still no white blood cells so he remains at zero for immunity and I continue to be a crazy OCD mom disinfecting everything in sight 24/7 - seriously I would 'Cavi wipe' everything in the room (door handles, light switches, call bell, all the vital sign equipment, the window sill where Bash played most of the day, literally anything that was wipeable!). His blood pressures were high through the day so we tried a slight increase with pain meds overnight to see if pain is the cause. He was tired but doesn't seem to be in pain. What an amazing kid we have!</span></span><br />
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<span style="background-color: white; color: #1d2129; font-family: Arial, Helvetica, sans-serif; letter-spacing: -0.12px;">Ok so there you have it - week one...</span>Terrahttp://www.blogger.com/profile/14631528262963150914noreply@blogger.com0tag:blogger.com,1999:blog-5770509328661642720.post-30290546479917091702017-08-14T15:04:00.000-07:002017-08-14T20:18:14.020-07:00Re-Birthday<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3tO60-EQiguTdiwA1vgM0dZkkgd1CK24eWy9Fp3xMP6GW7kh1YG-ymnYH2nBBGjaO2dWy9H6gsBo51FbawJM5VEJ1Xg145tWJ86fH1eORTWOhb2v2sXdq5yOrHXqkeKSXjm-tRc8yNr0/s1600/IMG_0089.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3tO60-EQiguTdiwA1vgM0dZkkgd1CK24eWy9Fp3xMP6GW7kh1YG-ymnYH2nBBGjaO2dWy9H6gsBo51FbawJM5VEJ1Xg145tWJ86fH1eORTWOhb2v2sXdq5yOrHXqkeKSXjm-tRc8yNr0/s320/IMG_0089.JPG" width="240" /></a>Hey all, it has been a long 46 days. I haven't posted an update here as I was doing daily ones on my Facebook page. I had hoped to be posting my blog updates and tapering off of the Facebook ones once we were home but we ended up back in the hospital last week as Bash got a fever after being home one day. I've been saving up a few though and I think it's time to share our transplant story.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgAnFQtKCwIcUe36atDI9roTBAb4j2wYgVFJvnYpMPb0gdiI3nElyIGGy5sMMAJ4DaZQotIABCzogOHQXc8Z6IkxQ67oG3pFk6PDrQpGn2S24PsF7AkiXQyjL4P3eTiP2lKpKyFLViebWQ/s1600/IMG_6355.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1198" data-original-width="1600" height="149" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgAnFQtKCwIcUe36atDI9roTBAb4j2wYgVFJvnYpMPb0gdiI3nElyIGGy5sMMAJ4DaZQotIABCzogOHQXc8Z6IkxQ67oG3pFk6PDrQpGn2S24PsF7AkiXQyjL4P3eTiP2lKpKyFLViebWQ/s200/IMG_6355.jpg" width="200" /></a>On the evening of June 29th we headed into the Alberta Children's Hospital to start the conditioning phase of Sebastian's bone marrow transplant. Conditioning basically means giving Sebastian different medications to destroy his bone marrow and immune system, making room for new donor bone marrow. He had blood samples drawn for a baseline, a check up with the BMT doctor and blood pressure monitoring overnight. He was given antibiotics as a preventative measure, and started his supportive drugs, (ie Gravol, Tylenol, etc.). On the 30th we officially started the countdown to transplant (day -7 is the first day and we count down to day zero - transplant day). Bash was given the first round of chemo - <a href="https://en.wikipedia.org/wiki/Fludarabine">Fludarabine</a>, and then surprisingly we were given a pass home for the afternoon! We did not expect to be allowed out of the hospital for months so this was a special treat! We had a BBQ at home with the Knutson grandparents and enjoyed the nice weather out on our deck.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDPDdLi_HailTLXowWw8p6ktn0vhKzlwut3hsSIC-6bb7PZG4n84xMqCMHKhGBEcTcYj71nTQrHNPWjbKH7yzy77c94XOGJkEaDetof3MUPFQYxdLv_MupZmxSzKRUlbZ-9nLoBZAFhJ4/s1600/IMG_0126.PNG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1136" data-original-width="640" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDPDdLi_HailTLXowWw8p6ktn0vhKzlwut3hsSIC-6bb7PZG4n84xMqCMHKhGBEcTcYj71nTQrHNPWjbKH7yzy77c94XOGJkEaDetof3MUPFQYxdLv_MupZmxSzKRUlbZ-9nLoBZAFhJ4/s320/IMG_0126.PNG" width="180" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2D0D31yXSrs6Fm5A8sl6ul-eaN4Ne9nRzugJocoEWKa1-jnGEi5hPOpLXK6sNIwf4Dvm2qK7DAwH-RwI9LlUjaT_uQo7acwCQfPThb5223NgOWEEOaqEv0WuCzcYC9Zpen-qTYpFQGjs/s1600/IMG_0149.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2D0D31yXSrs6Fm5A8sl6ul-eaN4Ne9nRzugJocoEWKa1-jnGEi5hPOpLXK6sNIwf4Dvm2qK7DAwH-RwI9LlUjaT_uQo7acwCQfPThb5223NgOWEEOaqEv0WuCzcYC9Zpen-qTYpFQGjs/s200/IMG_0149.JPG" width="150" /></a>Day -6 fell on July 1st, Happy Canada Day! Bash received more Fludarabine as well as <a href="https://en.wikipedia.org/wiki/Treosulfan">Treosulfan</a> - This is the new chemo med that is used in Europe, we were told that Bash is the first leukemia patient in Canada to use it for a BMT. He had a rough day as we needed to insert a catheter to help protect his skin as the chemo he is getting is excreted through his pee can cause skin to breakdown and may lead to infections. The nurses tried 4 times to unsuccessfully insert it. The <a href="http://www.healthline.com/health/what-is-a-urologist#overview1">urologist</a> was paged to come in and finally got the catheter in on her second attempt. It was terrible that it took so many attempts and we felt so bad for Sebastian. He only started getting upset by the third attempt, what a trooper! The nurses were tearing up for poor Bash by the end and had a hard time keeping it together. It was an unsettling reminder of the day we found out Bash had cancer and the troubles they had inserting his catheter then too. It was a tough situation unfortunately, but it was better than having terrible skin breakdown and open sores or infections on his bum. At this time he was also receiving anti-nausea meds and <a href="https://en.wikipedia.org/wiki/Lorazepam">Ativan</a> which should have made him really sleepy and docile, but had the opposite effect making him hyper active, unable to focus on one thing, and very clumsy. We thought we were going to have a sedated baby for the conditioning phase but we instead had a 'drunk baby' who wanted to be independent and stand and play on his own when he could hardly keep his balance sitting up - he was a ton of work especially with him stepping on his catheter tube, getting it twisted up and dealing with all the other lines coming out of him!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWXb6E3dmJ1vLj6SU3VN3863OJ-DPqXjehL4k_JlTXc9zZ58redMfoAZmQ9pbG7BhavO-xG5kr4EXX_SUrNQy_lUluflJoHYCCdTIs7vVWfnwnNVnnmzZ-1Q7PKseNzw5wkFud5f1Pw3E/s1600/IMG_0107.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWXb6E3dmJ1vLj6SU3VN3863OJ-DPqXjehL4k_JlTXc9zZ58redMfoAZmQ9pbG7BhavO-xG5kr4EXX_SUrNQy_lUluflJoHYCCdTIs7vVWfnwnNVnnmzZ-1Q7PKseNzw5wkFud5f1Pw3E/s320/IMG_0107.JPG" width="240" /></a></div>
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He got the same two meds on day -5, then started an immunosuppressant drug called <a href="https://en.wikipedia.org/wiki/Ciclosporin">Cyclosporin</a> on day -4. He also got <a href="https://en.wikipedia.org/wiki/Anti-thymocyte_globulin">Anti-thymocyte globulin (ATG)</a> this day. ATG is an infusion consisting of rabbit antibodies (yeah rabbits! who came up with that?!) which help prevent and treat rejection of the new bone marrow he will receive. </div>
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Day -3. Happy 4th of July! He got his last dose of Fludarabine, and more ATG. He was started on <a href="https://en.wikipedia.org/wiki/Parenteral_nutrition">TPN</a> (IV nutrition) to help keep his weight up. Doctors will put a nasogastric (NG) tube in but only after the next chemo drug he gets (Thiotepa) as it can cause extreme breakdown of his skin and a tube insertion and tape holding it in place could cause irritation and lead to open sores. His catheter was removed for this chemo as well, and thank goodness, as it was a constant struggle with all his IV lines tangling and pulling and him trying to be mobile, we were so worried he was going to pull it out - although it was nice not having to change his diaper as often. He did get his catheter line so twisted up one day that his pee stopped draining and actually diverted around the tube, ouch his poor little bladder!</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7_lFFdIG5at9NC4nwdf9VMW0ljm757MhHn3TtW9EYCuyFjJhVbe_RFvB3wlrYHerCmPS35HXTnWAhqwc8J7vAVBgpEh_oEqjnHl95BfTlB_VcOFBtu9NbqCdW0W1-fkbdxLC0F-o2X50/s1600/IMG_6403.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7_lFFdIG5at9NC4nwdf9VMW0ljm757MhHn3TtW9EYCuyFjJhVbe_RFvB3wlrYHerCmPS35HXTnWAhqwc8J7vAVBgpEh_oEqjnHl95BfTlB_VcOFBtu9NbqCdW0W1-fkbdxLC0F-o2X50/s320/IMG_6403.JPG" width="320" /></a>Day -2 was a long day. Bash got steroids as one of his supportive meds that made him feel wide awake and he decided he wanted to be up and play all night. It didn't help that the nurses thought this was 'cute' and 'encouraged' him by laughing and interacting with him - obviously they don't have kids lol. He started another chemo med (<a href="https://en.wikipedia.org/wiki/ThioTEPA">Thiotepa</a>) this day also. This chemo is excreted by the skin instead of his kidneys and he needed to be bathed every 6 hours for 24 hours to prevent his skin from burning. The baths had to be done overnight too and as luck would have it the timing of the med being given had him bathing overnight for TWO nights. His clothing and bedding also had to be changed along with his dressing on his broviac site. Any bandages or stickers on his skin could cause burns/breakdown so instead of the normal tape dressing we put over his broviac to protect it, we had to dress it with plain old gauze. This made the line very unsecured and a slight tug could pull it right out of his chest so we had to be extra careful whenever we moved him or whenever he was awake as he just wanted to go go go. It was a very stressful 2 days. Fun fact, this chemo can cause burns to anyone handling Bash... funny no one told us to wear gloves the first 12 hours and Nate and I ended up getting chemo 'burns' on our hands and arms - it felt like I had been cleaning the bathtub with bleach, and was uncomfortable like a sunburn.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizw5rnPQVeh80swiBEZaNPcxCVnKZRlGx9YT-c8r8OMGmUkBkZob5F6rHTIBzsIcA5tQmc8PVsTeyuYIQIdbPYURMMDZ7ZTWFmMwiuvBdiQnJsc2Ehd-OAvWLdppLYqqHuZ6-6oN8uJWQ/s1600/IMG_0175.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizw5rnPQVeh80swiBEZaNPcxCVnKZRlGx9YT-c8r8OMGmUkBkZob5F6rHTIBzsIcA5tQmc8PVsTeyuYIQIdbPYURMMDZ7ZTWFmMwiuvBdiQnJsc2Ehd-OAvWLdppLYqqHuZ6-6oN8uJWQ/s200/IMG_0175.JPG" width="150" /></a></div>
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Day -1 was our first overnight bath. 4am was an awful time to be woken up and thrown in a tub. Sebastian usually really enjoys his bath's but even he wasn't too happy about this one. Once we got him bathed, changed all his clothing and sheets, changed his dressing and had him all warm and snug in a blanket I realized his broviac line was coming down out of the dressing (not good) and we had to re-do the whole thing. It was probably one of the most frustrating nights of all our hospital stays. Nobody got much sleep. In the morning there was a stampede parade at the hospital, unfortunately we couldn't leave our room as he had zero immunity and was still on isolation for the Thiotepa. He ended up napping through the whole thing anyway. We did get a cowboy hat and a balloon for the celebration which he loved.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEguZuOVxTArlAOJFUEQB76UNMNZYdBcRMR7r2ZdlZr_O6Gj6lwuAHyIhPSXdclQp9hes4mM2PK_dEoLcMC58KaaAAQjz2YQdA8q7QGx17Z8Zgq9BTJS0xDyEJ8lLJjKggWqxVP5YeyR-18/s1600/IMG_0193.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEguZuOVxTArlAOJFUEQB76UNMNZYdBcRMR7r2ZdlZr_O6Gj6lwuAHyIhPSXdclQp9hes4mM2PK_dEoLcMC58KaaAAQjz2YQdA8q7QGx17Z8Zgq9BTJS0xDyEJ8lLJjKggWqxVP5YeyR-18/s320/IMG_0193.JPG" width="240" /></a></div>
Day 0 - July 7th - Transplant day!!! The transplant team calls this day your 're-birthday'. Today was 7/7/17 the perfect number for a second birthday and it ended up having some additional meaning which I will delve into later. I was surprised how fast this day crept up on us. For such a monumental day the bone marrow transplant was really uneventful. The donor bone marrow comes in an IV bag just like red blood cells. It is hung and given similar to a blood transfusion as well. Bash was given two infusions both given over three hours each with a three hour break in between them. His first infusion started just after 2:30pm while he was napping. Uncle Jerrad and the Knutson grandparents were all there for the big moment. We had a nurse specifically assigned to just us and they stayed in the room the whole time the transfusions were running just to be sure Bash didn't have any allergic reactions. He tolerated everything extremely well, and had no reactions which was excellent. It was an emotional day and one we were both excited and terrified for. </div>
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Where ever our superhero donor is, we want to send out a heartfelt thank you. Hopefully one day we can thank you in person and show you how much this gift means to us and let you see the life you have given another. Thanks for being our one-in-a-million!</div>
Terrahttp://www.blogger.com/profile/14631528262963150914noreply@blogger.com1tag:blogger.com,1999:blog-5770509328661642720.post-66353876233056149852017-06-26T22:18:00.001-07:002017-06-26T22:18:29.240-07:00Countdown to TransplantFor the last few weeks we have been counting down to our transplant date. July 7th. I am a mixed bag of emotions. I was surprised that when I got the call, the first thing I felt was excitement, followed swiftly by sheer terror. Excitement that this next chapter is starting, and I can see a light at the end of the tunnel. Yet terrified that we have to do this, that something could go wrong, and that I could lose my baby. <div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjGUrHvMt7Wcut97dBtBzk_Z_MuoQMPgMiUzdWXecj6wbR8x2NrgvLavbx95bPqHpooP3-FSJI-5ivuRjEg-t4gx1mmH-HY_n5vVx81i8sIatviqhv8N2xPmsdsepzZjk5qHePih7Ve24k/s1600/20170606_untitled_196.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1067" data-original-width="1600" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjGUrHvMt7Wcut97dBtBzk_Z_MuoQMPgMiUzdWXecj6wbR8x2NrgvLavbx95bPqHpooP3-FSJI-5ivuRjEg-t4gx1mmH-HY_n5vVx81i8sIatviqhv8N2xPmsdsepzZjk5qHePih7Ve24k/s320/20170606_untitled_196.jpg" width="320" /></a><div>
Having a date has made transplant seem so very real, and it is starting so soon. We will be admitted to the hospital on June 29th and Bash starts chemo to wipe out his bone marrow and immune system on June 30th. The Bone marrow transplant team counts down from -7 and on day 0 Bash will receive his new bone marrow - July 7th. </div>
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As you can all imagine, I have been a nervous wreck and a not very fun person to be around for the past few weeks, trying not to think of worst case scenarios, going over and over what could go wrong, and doing my best not to google any side effects or issues that could arise. I feel like I have been in a very dark place, it has been really hard to stay positive. I'm not sure you can ever be truly ready for something like this, and as much as I'm dreading the day we have to head in, I am ready to be on the other side of this, we all are. If only we could push the fast forward button just for this one part. The next few months will be extremely difficult.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiyfIl3dv9Q-V66sKZLi-yerMZMkNU03Pg-VHmqFQAeldyR3EfYEJMqzRXKDEDaLYqsHsIErlC8JS5_g70eI9nhAvd868uq-HzqWriLu-L1-sNVUbBNT3DeuJF36ocKBNRoLIyVnkgTtFc/s1600/IMG_2014+2.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1099" data-original-width="1600" height="217" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiyfIl3dv9Q-V66sKZLi-yerMZMkNU03Pg-VHmqFQAeldyR3EfYEJMqzRXKDEDaLYqsHsIErlC8JS5_g70eI9nhAvd868uq-HzqWriLu-L1-sNVUbBNT3DeuJF36ocKBNRoLIyVnkgTtFc/s320/IMG_2014+2.jpg" width="320" /></a>Along with all these emotions we did receive some amazing news! The bone marrow aspirate Bash had a few weeks ago found NO LEUKEMIA CELLS!!! The last phase of chemo finally put him into remission! Our bone marrow Dr said that this is the best case scenario going into transplant. Yes, we still have to do the transplant. The cells are still present that mutate and cause cancer and we want to wipe those guys out too. Once the donor bone marrow is transplanted it only needs to grow and take hold, it doesn't need to also fight any remaining cancer cells, which is a huge relief. As terrifying as this process is we do have so many positives going our way. We have the best possible match (10/10) for transplant, we are getting bone marrow not just stem cells (it's more painful to donate marrow but more effective), a new treatment protocol that is less harsh without needing radiation, and now the cancer is finally in remission just before we start this phase. Sebastian is healthy, happy, and has been so resilient through all of this. Truly a miracle, and the best we can hope for. I'm sure he'll continue to dazzle the whole oncology unit, he is such a little flirt and loves all the attention.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpACxZzPLQao1Z0RxGiNVg9YAi2OKemxy4JfGXtiHr7_jqHRDyqT5ni2yB5kJLxeBEgYMB9USnuDyoD6fG3XtaPjP77jg0T9xSUPPPZpXL54XwLeRPig7Ne6x-jDSkTcmEFI173lFzlDk/s1600/FullSizeRender+%25282%2529.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1198" data-original-width="1600" height="239" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpACxZzPLQao1Z0RxGiNVg9YAi2OKemxy4JfGXtiHr7_jqHRDyqT5ni2yB5kJLxeBEgYMB9USnuDyoD6fG3XtaPjP77jg0T9xSUPPPZpXL54XwLeRPig7Ne6x-jDSkTcmEFI173lFzlDk/s320/FullSizeRender+%25282%2529.jpg" width="320" /></a>Last week our family put on a fundraiser. Their idea started out as a small steak night gathering and quickly turned into a full on extravaganza that filled a hockey rink! It was a great success with a huge turnout. We wish we could have been there, but from what we've heard it was an incredible time. We have the most thoughtful and supportive family anyone could wish for. They gave so much time, effort, and love to make it happen. The community really came together and we are so fortunate to have so many wonderful people behind us. Here is a handful of our All Star family with their #TeamBash shirts at the ball tournament they played in the next day. Love you guys all so much.</div>
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Terrahttp://www.blogger.com/profile/14631528262963150914noreply@blogger.com3tag:blogger.com,1999:blog-5770509328661642720.post-50741302533553730922017-06-11T20:30:00.000-07:002017-06-11T20:30:28.005-07:00Bash is One!<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBjhxBoRjB-4yeWKh44efJ-Z4Stu26aUSl25_yM90bVH_1JO9DpQJjNyeGyMbOeQS339vVLYNjGoXvMGM5LfGKRGWGvu2tjVYsuk4a4tyc41lXroJwde8b5i8ybwHIbYgZjsnpLv-57BE/s1600/IMG_0171.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1080" data-original-width="1252" height="276" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBjhxBoRjB-4yeWKh44efJ-Z4Stu26aUSl25_yM90bVH_1JO9DpQJjNyeGyMbOeQS339vVLYNjGoXvMGM5LfGKRGWGvu2tjVYsuk4a4tyc41lXroJwde8b5i8ybwHIbYgZjsnpLv-57BE/s320/IMG_0171.jpg" width="320" /></a>It's been a few weeks since I posted, but for the most part of the last few weeks we have been at home!!! And not just any home, we moved to a new house last weekend! We love it! There is so much more space for us to spread out in, a beautiful backyard to enjoy for the summers, and breathtaking mountain views. We couldn't be happier about it. It's also much closer to the hospital which is great - we've put 5000kms on the car since February driving back and forth to the hospital. Now we're only a 12min drive away!<br />
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Sebastian also turned one last weekend!!! ONE! I'm not sure how he grew up so fast, but he did, and we celebrated with a BBQ and some close family in our new backyard. The weather was perfect, Sebastian was spoiled rotten, and we enjoyed visiting with everyone. Unfortunately we couldn't have any little friends over to celebrate with us this year, but hopefully next year. We can't wait until he can play and interact with his friends, he gets so excited any time he sees someone his size.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUEeNbSv6xRL05HMeti72xN30wol-V5wH-36x8t33XZ5SFMlKZFe7EmFDIrQv9tFFb2dQUT4IfPnMLyTNwHah9oEtRYBWgpBglQVSiEkaTojUCjowFhhb3hww4gtfTgtDwKHk3TFs2xew/s1600/IMG_1385.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUEeNbSv6xRL05HMeti72xN30wol-V5wH-36x8t33XZ5SFMlKZFe7EmFDIrQv9tFFb2dQUT4IfPnMLyTNwHah9oEtRYBWgpBglQVSiEkaTojUCjowFhhb3hww4gtfTgtDwKHk3TFs2xew/s320/IMG_1385.JPG" width="240" /></a>Our amazing cousins and family are throwing a fundraiser for Bash on June 23rd "Cash for Bash" and if anyone would like to attend or for more info you can follow the link <u><a href="https://www.facebook.com/events/491518011180594/?acontext=%7B%22ref%22%3A%22106%22%2C%22action_history%22%3A%22null%22%7D">here</a>.</u> It's incredible how big it's gotten already and people have donated some awesome prizes so far!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjmu4m3pq7hC65jOAu3auGXpZTeBjuB0mjLTVEejTjXyj4U5zgdDHqd9wm4oj03-G-qpm6YbzOyc27NBGxARBfZzIrVPaECRXECTWF07MbZEnNq2644KuTKPUD6dNET8opdfWD9MFZtKuo/s1600/IMG_6132.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjmu4m3pq7hC65jOAu3auGXpZTeBjuB0mjLTVEejTjXyj4U5zgdDHqd9wm4oj03-G-qpm6YbzOyc27NBGxARBfZzIrVPaECRXECTWF07MbZEnNq2644KuTKPUD6dNET8opdfWD9MFZtKuo/s320/IMG_6132.JPG" width="240" /></a>Bash has had a few blood count checks in the past weeks that were low and he required blood transfusions/platelets for and although those days we spent all day in the out patient clinic, we are glad to not be in patient. Tomorrow (June 12) we head into the hospital for a lumbar puncture and bone marrow aspirate. Just a quick day procedure. The results will not change our course in any way, but it will be good to know what his baseline is, and if there are any leukemia cells remaining after this last round of chemo. Other than the quick blood counts every 3-4 days or so, and one last exam for his eyesight, we will be home for the remainder of June - as long as he stays healthy (fingers crossed). We don't have an official date set yet for transplant, just near the end of June, hoping we find out the exact date soon. For now we are enjoying being home so so much and getting a taste of what 'normal' life is.<br />
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<br />Terrahttp://www.blogger.com/profile/14631528262963150914noreply@blogger.com0tag:blogger.com,1999:blog-5770509328661642720.post-89037381452678253472017-05-24T17:12:00.000-07:002017-05-24T17:12:23.534-07:00The road to transplantIt has been a long six week stretch in the hospital and much of it on isolation. We were finally discharged on Thursday (May 18). We got to spend the long weekend at home while we wait for Sebastian's counts to recover before we start the next and final chemo for this round, <a href="http://chemocare.com/chemotherapy/drug-info/ara-c.aspx">High Dose A-RAC</a>.<br />
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We met with the bone marrow transplant (BMT) team on May 10th and got the latest info. We have two <a href="https://bethematch.org/for-patients-and-families/finding-a-donor/hla-matching/">10/10 HLA bone marrow</a> matches (best possible) which is pretty amazing! We will likely start the transplant at the end of June, once he has had all the pre-testing to be sure his body is ready, and once he has had a bit of a break from this last chemo round. There was a lot of info and it was very tough. You know those commercials about drugs and all of their side effects that make you wonder why anyone would take it?! That's how this meeting felt to me. Nate and I both felt disheartened and on edge after.<br />
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There are three stages Bash will go through for transplant:<br />
1. Conditioning (to prepare his body)<br />
2. Stem cell/bone marrow infusion (like having a blood transfusion)<br />
3. Engraftment (donor cells find their way to the bone marrow and start to grow)<br />
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For conditioning they use a high dose chemo (Busulfan) to wipe out his current immune system and then drugs to suppress his immune system. The chemo and meds are given over 7 days, and they will be very hard on his body. He will lose his hair and nails, get mouth sores and skin breakdown which will require pain management, he will have nausea and vomiting and require nutritional support, he may have seizures from the chemo and will be on an anticonvulsant, he will be at an extremely high risk for infections - life threatening, and may require ICU support for blood pressure and breathing support and will receive precautionary antibiotics, bladder infections causing bleeding, he may get <a href="http://www.aboutkidshealth.ca/En/ResourceCentres/BloodandMarrowTransplant/WhileYourChildIsInHospital/ComplicationsandTheirTreatment/Pages/Veno-OcclusiveDisease.aspx">veno-occlusive</a> disease, fevers are common, rashes and risk of allergic reactions, risk of infertility, and he is at risk for secondary cancers later in life. Still with me? Cause I blacked out somewhere after seizures.... This is so scary, he is so little, and I hate having to put him through it - Fuck you cancer.<br />
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During conditioning they also give radiation. This step is one we are very uncertain of and questioned our BMT doctor about it. He said it's a small dose (400 cGy) and it has not shown too many development issues later in life for other patients, but still a risk. Bash will have to get total body irradiation, not pinpointed on one spot as his cancer is literally everywhere. He will be at risk of a secondary cancer later in life, and will most likely be infertile if the chemo hasn't already robbed him of that.<br />
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After conditioning he gets his stem cell or bone marrow infusion. The cells are infused similar to a blood transfusion over 1-4 hours through Bash's central line. It will take 2-3 weeks for <a href="https://bethematch.org/for-patients-and-families/getting-a-transplant/engraftment--days-0-30/">engraftment</a> to happen - this is where the stem cells find their way to his bone marrow and start to grow. He will continue to have nutritional and pain management support. The transplant team will also continue to be on the watch for the side effects I listed above. Bash will now be at risk for <a href="https://my.clevelandclinic.org/health/articles/graft-vs-host-disease-an-overview-in-bone-marrow-transplant">graft vs. host disease</a> (GVHD) and similarly, host vs. graft disease (HVGD). GVHD means the new donor cells don't recognize their new environment and start to attack it. In HVGD the host 'kicks out' the stem cells resulting in rejection. GVHD may be acute or chronic and acute can happen within the <i>first</i> 100 days. He has a 20-40% chance of developing some form, usually mild, and it is treatable with steroids. It is also slightly beneficial to have a small amount of GVHD as he would get <a href="https://en.wikipedia.org/wiki/Graft-versus-tumor_effect">graft vs. leukemia effect</a> which may mean he is less likely to relapse.<br />
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Bash will be given 2 drugs to prevent GVHD:<br />
- Cyclosporin - given 2x day for 2-3 months<br />
- Methotrexate - given 4x after the stem cell infusion.<br />
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Chronic GVHD occurs <i>after</i> 100 days, is less common occurring in 10-20% of all patients, can be mild, moderate or severe, can affect any organ in the body, and is treatable with steroids.<br />
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A month or two after the transplant his blood counts will start to recover, healing will start to occur and he will be prepared for discharge home. Once we are home we have to be very careful still about exposure to crowds and people who are sick for at least 6 months. Bash will have his blood checked at least 3 times per week in the first few months to see that he doesn't have GVHD.<br />
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So back to that uneasy feeling we had about radiation and the harsh chemo drugs with all the nasty side effects. We mentioned our concerns to our team, and our doctor did some research. There is a different chemo med that they have been using in Europe since 2007 with really great results - so good in fact that over 70 hospitals there are currently using it and they are in the process of getting it started in Canada. This chemo drug (Treosulfan) is much less toxic and will lessen the side effects I listed above, have less risks of future issues, and it is used without the need for radiation with the same percentage of a cure (80%). <a href="http://onlinelibrary.wiley.com/doi/10.1002/pbc.25764/abstract">Here</a> and <a href="https://www.researchgate.net/publication/265792845_Treosulfan-based_conditioning_regimens_for_allogeneic_HSCT_in_children_with_acute_lymphoblastic_leukaemia">here</a> are links to the study. This drug has been used in Canada for immuno-compromised children with great success but has yet to be used here for Leukemia patients getting a BMT in Canada - we would be the first. Our doctor agreed that this would be an excellent treatment plan and assured us the whole team is knowledgable and comfortable giving it. After a week of research and contemplation we felt this option with less risks, less side effects, and no radiation with the same rate of outcome for a cure would be the best for Sebastian now, and in the future.<br />
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In other news we are moving to a new house at the end of May! We will be closer to the hospital and have much more space. Then we have Bash's first birthday on June 4th! We hope he will be well and finished this last chemo so we can all be home to celebrate. We are very excited and have a busy couple weeks ahead.Terrahttp://www.blogger.com/profile/14631528262963150914noreply@blogger.com4tag:blogger.com,1999:blog-5770509328661642720.post-68799122411639133842017-05-01T21:52:00.000-07:002017-05-02T08:53:41.598-07:00Giant Pain in the Neck<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdGKEozYmtir0rYXmLpdaIDDX5MZEOeh5uDlmxQOXuddyDrVIdFY1frhtlQ1WO0iJ1KqUo6srbO0mtF2Vj1j1T1sm6Abri2b1IOJCOEZVx3-2U86LWBFQVHM2tccA3AOkYHYudtEiTidY/s1600/6BA5E297-80A7-4FEF-9BA2-22C3362CC053.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdGKEozYmtir0rYXmLpdaIDDX5MZEOeh5uDlmxQOXuddyDrVIdFY1frhtlQ1WO0iJ1KqUo6srbO0mtF2Vj1j1T1sm6Abri2b1IOJCOEZVx3-2U86LWBFQVHM2tccA3AOkYHYudtEiTidY/s200/6BA5E297-80A7-4FEF-9BA2-22C3362CC053.jpg" width="200" /></a>Sebastian has had a tough few weeks. Just keep swimming has been my mantra lately. Waiting for news about the Bone Marrow Transplant, continuing chemo treatments, trying to keep his weight up, and lots of in patient hospital time. We also had the NG tube put in - it lasted all of five minutes after the first time in, and he pulled it out another two times after that before we gave up. He was able to pull it out with mitts on even! It was more stressful than him not eating, trying to make sure he didn't pull it out and having to come back to clinic to re insert it.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_Aemz-yoUJ9LzNDFTQ4SMvDp9H8ac0TxQjNAYtyeuBDc1LX3D8yVBVhrVMv9-PeHZ9YuELYRXzgwdho0nHs6wM_TCAha1Rhaibzl4CyqCnbsJuNCsbeyaLkGUqy3yu4DAYnAXa7rO0VQ/s1600/IMG_0956.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_Aemz-yoUJ9LzNDFTQ4SMvDp9H8ac0TxQjNAYtyeuBDc1LX3D8yVBVhrVMv9-PeHZ9YuELYRXzgwdho0nHs6wM_TCAha1Rhaibzl4CyqCnbsJuNCsbeyaLkGUqy3yu4DAYnAXa7rO0VQ/s320/IMG_0956.JPG" width="240" /></a>After Sebastian finished his Dexamethasone week from hell - he was a baby monster - not sleeping, so hungry but only eating yogurt and Pediasure, and super clingy and emotional, crying all day - we were all exhausted and ready to start the next chemo and forget Dexamethasone exists. On the last day of his steroid he had to fast for his lumbar puncture procedure as they put him under anesthetic. How do you tell a steroid raging hungry infant he can't eat for 7 hours while we wait for a quick 20 min procedure?! He was absolutely miserable and he made sure to let everyone in the oncology clinic know it! Strangers were walking by staring at us like why the heck can't you stop your kid from crying? Believe me I wish I could have comforted him somehow, he was having none of it. After being delayed (this always seems to happen), waiting what seemed like an eternity and being so frustrated with the system and questioning how necessary all this garbage we are putting Bash through is - even losing faith in our team, we got his procedure done and over with. Phew.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgTRV3bG0R1Nf-mEWBWpd3F3NMRAQRtjarkcVQ28OhOkmIT7MhzuPwFILyWqjMuoFux703JPEGlQ17Y8d0hoZ6XHgWawANXQ1jezAQ8qte475sUEUYTiODgCP7pU4pkfYWHZWf3rX1iNhs/s1600/IMG_1047.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgTRV3bG0R1Nf-mEWBWpd3F3NMRAQRtjarkcVQ28OhOkmIT7MhzuPwFILyWqjMuoFux703JPEGlQ17Y8d0hoZ6XHgWawANXQ1jezAQ8qte475sUEUYTiODgCP7pU4pkfYWHZWf3rX1iNhs/s200/IMG_1047.JPG" width="150" /></a>The next few days he turned back into the normal happy lil guy we know. We started high dose Methotrexate (HD MTX) again and he cleared it out of his system so fast this time that the doctors were questioning whether or not the treatment was effective, and for his next dose are thinking of not hyper hydrating him as much. (Remember the first time he had it he had trouble clearing it and had toxicity and they ordered a special med from Vancouver?). They already have the medication on hand and ready to go for this next round, hyper hydrated or not.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEglrOmsqJ6xtDZmp_t32oEB2hBaJz0pw0-soLVMYjMUFd4ZFUO7Aas9ka-QMlbsaxfoL3y85QICBA0Vwa0SKwnWZxRsR21hLNV1UDXygDW1VgAtj2py7NDlI5aUx76_h6lKrCUmOe-Z6LA/s1600/IMG_5824.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEglrOmsqJ6xtDZmp_t32oEB2hBaJz0pw0-soLVMYjMUFd4ZFUO7Aas9ka-QMlbsaxfoL3y85QICBA0Vwa0SKwnWZxRsR21hLNV1UDXygDW1VgAtj2py7NDlI5aUx76_h6lKrCUmOe-Z6LA/s200/IMG_5824.JPG" width="150" /></a>Last Saturday (Apr 22) we were discharged home, only to return Sunday afternoon after battling off and on fevers overnight. On top of that his skin started to react very badly to some previous spots on his back where he had bandaids. The HD MTX he had the Wednesday before (Apr 19), which causes rapidly dividing cells to break down, was seriously affecting his little body in a way he has not reacted before - even though he cleared it so fast! Doctors expect most children having this chemo to show some signs of breakdown, especially in their mouth. This was Sebastian's fourth time having HD MTX and his first time showing any ill effects. That night was awful and we were super worried about him. His fevers continued and he was definitely having pain. Our nurse was also very concerned and kept a close eye on him. His blood cultures taken to check for infections also showed his platelet count was only 13 so a STAT platelet infusion was done. Nathan stayed the night with us and we shared the tiny parent bed as best we could, both of us curled up on either end. I don't think we really slept. In the morning we noticed Sebastian had started getting blisters on his poor back that turned into open sores. Any spots on his body where he had slight skin irritations flared right up.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOAqGGEBcCejH01IdM_MkBsjzofYBYJjqg9BNewUjgd9lSgOOnGKfK4wL-vBaCDyIS3hMdn75hR0Mb-XLADn83ac-AtqXHhH421a4hR4sNARLV_mk6d5GPMIxZKQqXezZ26LosV_wxxOk/s1600/IMG_1019.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOAqGGEBcCejH01IdM_MkBsjzofYBYJjqg9BNewUjgd9lSgOOnGKfK4wL-vBaCDyIS3hMdn75hR0Mb-XLADn83ac-AtqXHhH421a4hR4sNARLV_mk6d5GPMIxZKQqXezZ26LosV_wxxOk/s200/IMG_1019.JPG" width="150" /></a>He then got <a href="https://en.wikipedia.org/wiki/Mucositis">mucositis</a> in his mouth so bad he refused to eat and even breastfeed. He started having nose bleeds, bleeding gums and lips. The doctors started him on a morphine infusion to help control his pain, <a href="https://en.wikipedia.org/wiki/Parenteral_nutrition">TPN (total parenteral nutrition)</a> to keep him strong as he was not eating, and antibiotics for the fever. He then had blood for more low counts. He had us so worried about him.<br />
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As if all this wasn't enough bad luck, the day after Nate spent the night, he woke up with a kink in his neck and spasms causing him so much pain he couldn't get out of bed! I sent my brother over to the house with Robaxacet and had him check up on him. Nate was out of commission for the day. My brother brought me lunch and I got a nice visit with him. Nathan went for a massage the next day that allowed him to at least slightly move his neck and he was able to get to the hospital to be with us again.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjKU87c9ZgWWOKgLzjzj9lJFoOOnStx0vZKimBNxaXonGsymkEVxwBIc_YGGn-xACrGtDL8Tr22VYxC8t2x3hZ6wcf_DaFC08tDkuDN9UHVaoLHF52wRliA3Uij6HO9gQ2sj16b2XiqPU/s1600/IMG_1007.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjKU87c9ZgWWOKgLzjzj9lJFoOOnStx0vZKimBNxaXonGsymkEVxwBIc_YGGn-xACrGtDL8Tr22VYxC8t2x3hZ6wcf_DaFC08tDkuDN9UHVaoLHF52wRliA3Uij6HO9gQ2sj16b2XiqPU/s320/IMG_1007.JPG" width="240" /></a>Bash is finally on the up we think, and nothing grew from his blood cultures. He was taken off of isolation on Friday. The morphine infusion was slowly decreased and was stopped today to see how he feels. He has been a little monkey and learned how to pull himself up on things this week, he is getting into everything! He is so funny and amuses us more and more - his little laugh is infectious, and he has every nurse and doctor here wrapped around his little finger! We got a one hour pass yesterday too and we went for a walk in the park next to the hospital, ahh freedom! He has one more dose of HD MTX which was supposed to start last week but has been postponed until possibly tomorrow - I am dreading it and hoping he does not react like he did ever again.<br />
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In other news, we have three possible bone marrow matches! There is further testing happening to narrow down the closest match and we have a meeting scheduled for May 10th to find out all the details about this new road we are headed down. He had a hearing test today which he passed with flying colours, and will have his eyes and teeth checked out as well to make sure he is healthy and ready for transplant. He has two new top teeth that popped out (top middle and top left) and I'm looking forward to finding some new foods he can get into.Terrahttp://www.blogger.com/profile/14631528262963150914noreply@blogger.com1tag:blogger.com,1999:blog-5770509328661642720.post-41354402319450412032017-04-09T11:28:00.000-07:002017-04-09T11:28:11.663-07:00Blessing in Disguise?<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7iTsR-WNhimg46P2M8auH5ICOeFaS1MKrap6mnBOLX1EO3m3a7JnNxGDWSbH2qLFE9pl6cS1vDXZeTTF_cVi0mfBT0ToyX9dNRHYYuDdMZNVoKZjvQSHRRs6eehaL-K9PWE4z8H7USJI/s1600/FullSizeRender+%25281%2529.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7iTsR-WNhimg46P2M8auH5ICOeFaS1MKrap6mnBOLX1EO3m3a7JnNxGDWSbH2qLFE9pl6cS1vDXZeTTF_cVi0mfBT0ToyX9dNRHYYuDdMZNVoKZjvQSHRRs6eehaL-K9PWE4z8H7USJI/s320/FullSizeRender+%25281%2529.jpg" width="209" /></a>It's been 11 days since we found out Bash needs a bone marrow transplant (BMT). It wasn't the news we were hoping for. We had hoped that the chemo was working and it would put him into remission. It was another kick in the gut. The BMT does have a riskier path, but also comes with a better chance of a cure. In some ways it feels defeating, but it also feels like the right path deep down. If we had gone through chemo and in a year or two had the cancer return (possibly more aggressive) we would have to take this route anyway. Since Sebastian has a blend of two types of Leukemia (80% ALL, 20% AML) we feel like this might be a blessing in disguise to take this harder road and be rid of this disease now so that we can move on with life and put this behind us.<br />
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We have been overwhelmed with people asking how or if they can donate to him. I've been holding off writing an update hoping I would have answers by now. We have been patiently waiting to talk with the bone marrow transplant team about our next steps and what treatment is going to look like now. The day we found out, a BMT nurse gave us some info, but since then no one has come to speak with us which has been very frustrating. We have many questions and seem to only have more as the days go by.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2Fzbw6fIs4CSdvhumiZghwuSylQ0p5JXeQANqE0y6N1XemShdEiP-McEPHFl6ZKcoTdaoqWnxTFc23OSTejVl8r28Lp4IlQorx7OwfLw_ghYS4eJ28qsxsDr_Omc4SejZeCm7nQZMj8Q/s1600/IMG_0056.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2Fzbw6fIs4CSdvhumiZghwuSylQ0p5JXeQANqE0y6N1XemShdEiP-McEPHFl6ZKcoTdaoqWnxTFc23OSTejVl8r28Lp4IlQorx7OwfLw_ghYS4eJ28qsxsDr_Omc4SejZeCm7nQZMj8Q/s320/IMG_0056.JPG" width="320" /></a>This is what we know so far, and I will update again once I know more. Bash has been entered into the international bone marrow database, they pull matches from around the world. It can take up to 10 weeks to find a match. We were told we would probably hear about a possible match by 4-6 weeks. Nate and I only have a 2% chance of being a match. Family and friends can not donate directly to him, but you can go to the Canadian Blood Services website <a href="https://blood.ca/en/stem-cell/donation-process">here</a> and sign up to be entered into the national database to be a donor for not just Sebastian but for other families who may be in our situation. The chances of you being a match for Bash are one in a million, but maybe you can be another families one in a million.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhya7pZHk6Aa0CDN3XhVhGZp5hGPpJUc7oav0ANAA_cckjYbzO2w_f92ilZAz-FBXqU-wQ8zKit-yoh-VWSsNslYLaSBighTiAfcLtDA2xHg8m-sT8i4jwSFFUQV23NqoTnnmkocP3dTZg/s1600/IMG_1612.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhya7pZHk6Aa0CDN3XhVhGZp5hGPpJUc7oav0ANAA_cckjYbzO2w_f92ilZAz-FBXqU-wQ8zKit-yoh-VWSsNslYLaSBighTiAfcLtDA2xHg8m-sT8i4jwSFFUQV23NqoTnnmkocP3dTZg/s200/IMG_1612.JPG" width="133" /></a>Currently we are in the middle of the re-induction phase, not consolidation as I had written in my last post. This phase consists of chemo meds we saw in the very first phase and Dexamethazone, a steroid which makes Bash very emotional and extremely hungry all the time. We have been discharged once for a few days already this round and sent on a few passes and extended passes. Right now his Absolute Neutrophil Count (ANC) is recovering from zero, so we are back in the hospital until his numbers come back up. On Wednesday (Apr 12) he gets another Lumbar Puncture with chemo injected into his spinal fluid, then resumes a week of Dexamethazone which ends this phase.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5tCCvkGDgh3hdAUQihJfJl5BI3WB6ebNtLPh4aVylfKlxii5AseOdC6LygmemkrHB4sgDSodP2G9JIr6OLGyzSWClI0Y6rg4jLAwjzahsDJvXTyzpIsrt-XwhAXnsXH6_vdqjFRy83UE/s1600/IMG_0892.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5tCCvkGDgh3hdAUQihJfJl5BI3WB6ebNtLPh4aVylfKlxii5AseOdC6LygmemkrHB4sgDSodP2G9JIr6OLGyzSWClI0Y6rg4jLAwjzahsDJvXTyzpIsrt-XwhAXnsXH6_vdqjFRy83UE/s200/IMG_0892.JPG" width="150" /></a>Doctors started pushing for a nasogastric tube again today as his weight has been stable but no gains since January. We have been feeding him full fat 11% greek yogurt, avacado, oatmeal, macaroni, pizza - really anything that has a high fat content or that he likes. We even add cream to his water! The weight just wont stick. We are going to have to put the NG tube in soon so we can try to get his weight up before the BMT<br />
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happens. I hate it - I feel pushed into it, but he needs to be healthy and he needs to start gaining so he can be strong for the road ahead. I just really hope having the tube will not hinder him from eating and drinking normally or cause any adverse effects - if you can't tell, I have extreme anxiety about it.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjtlyaYDUc00b9L49Wrh9BF92gCOFtiMzmJ_a40yTilubi_4Qv0oPvAdtukA9xImW2VEjm9OScqLkm1vFjbcJAdust7eI49duh1JLFR1vMZGlB8NSm6adGK4bTzO-q68M377GrLqfYugk/s1600/IMG_0061.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="133" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjtlyaYDUc00b9L49Wrh9BF92gCOFtiMzmJ_a40yTilubi_4Qv0oPvAdtukA9xImW2VEjm9OScqLkm1vFjbcJAdust7eI49duh1JLFR1vMZGlB8NSm6adGK4bTzO-q68M377GrLqfYugk/s200/IMG_0061.JPG" width="200" /></a>Bash has been such a fighter through all of this and we couldn't be prouder of him and the accomplishments he has made so far. Not just in treatments but in growing up with all these road blocks. His resilience is astounding, his strength and courage through this amazes us, and has been helping us get through this. When we are home we have been getting outside to enjoy the nice weather. We took Bash for his first bike ride in his chariot this past week and he absolutely loved it!<br />
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<br />Terrahttp://www.blogger.com/profile/14631528262963150914noreply@blogger.com5tag:blogger.com,1999:blog-5770509328661642720.post-71758588683787231152017-03-28T13:43:00.000-07:002017-03-28T14:23:06.451-07:00Long Story ShortFeels like forever since I updated... I'm mostly frustrated lately. This last round was tough and it felt like we didn't know what was going on a lot of the time. There seemed to be a big disconnect with the doctors, nurses, and team about Bash's care and letting us in on it.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEip-P8kYhq3Nv-YwUIALMLdpkTn1F_Sd9tMlaIfQKRpgQHc8AtWeeOQ9laiAMWRksFfP8u6zz6Qd9ZXiBznsHXZomZxUI7NZiw5m5l4qci93Uf2hUeyZDMktE5M3AB33km6gs5eHepr90I/s1600/IMG_0681+2.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEip-P8kYhq3Nv-YwUIALMLdpkTn1F_Sd9tMlaIfQKRpgQHc8AtWeeOQ9laiAMWRksFfP8u6zz6Qd9ZXiBznsHXZomZxUI7NZiw5m5l4qci93Uf2hUeyZDMktE5M3AB33km6gs5eHepr90I/s320/IMG_0681+2.jpg" width="240" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSJqcrYnGGSnotbjKwEEK0BmhGG-JViX4CwrZrlVl5XL3LIdNqx7Vh5ilaq68SL6jEQF1YNjD43Ti-Us_o7sM3_9CwnurjiaJnhaYJdobKdcacm5vxOxxu0pdMGalXstE4i16JAKmg7Bk/s1600/IMG_0715.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSJqcrYnGGSnotbjKwEEK0BmhGG-JViX4CwrZrlVl5XL3LIdNqx7Vh5ilaq68SL6jEQF1YNjD43Ti-Us_o7sM3_9CwnurjiaJnhaYJdobKdcacm5vxOxxu0pdMGalXstE4i16JAKmg7Bk/s200/IMG_0715.JPG" width="150" /></a>I was feeding Bash lunch one day, only had a shirt and diaper on him as its way less messy that way, and our nurse came in to do an assessment and said he looked mottled to her. I said he was cold from the no clothes and needed to warm up - he looked normal to me. Well apparently she felt differently, and hey - great that she was watching out for him, but she told the new 'baby' doctor on service that day, who took one look at him, decided he was tachy (fast heart rate), and showing signs of infection?! Ordered a fluid bolus, a blood panel to check for infection, and started antibiotics (that means no passes home for us). I should have stood my ground, made them wait an hour, as I knew he was fine. Low and behold, two days later nothing grew from the blood cultures and antibiotics were stopped. I'm glad they were on their game but it was unnecessary and I felt like no one was listening to me.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-grvSUzX8ajmFY27hu6cOKZxBlhyraoZdFm7-NQk1AjCtdkMzjHiwePSRL_i1DI9hoOD1WyNzDLI1UiIUWw1OUbOMd75YQPnx8MjbgO_2rKykGKahVtiXTkKiFKDH1-pWTUKjk5McEvo/s1600/IMG_0754.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-grvSUzX8ajmFY27hu6cOKZxBlhyraoZdFm7-NQk1AjCtdkMzjHiwePSRL_i1DI9hoOD1WyNzDLI1UiIUWw1OUbOMd75YQPnx8MjbgO_2rKykGKahVtiXTkKiFKDH1-pWTUKjk5McEvo/s320/IMG_0754.jpg" width="320" /></a>We battled to get a few overnight passes since he was all clear for infection, not receiving any meds, and had high counts. We weren't discharged home like we had thought as our oncologist wanted Sebastian admitted because his immunity was expected to drop from the last week of chemo. Once his white blood cell levels dropped to zero, we were confined to our hospital room, twiddling our thumbs. Waiting is the worst.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKuEl6eo3Ha_gtavKb8xcSOVWeLMaRB1fmc3lPKdW_fjtzNdPiEG-hq_YJZtoVsxYX-CWCH0zgkq47QO7bny7R1Yi-fJkzaheJxaCNhse2hTpFD8JpKhx8YRAOSXaCAGAoeKmlDLSAscI/s1600/IMG_0788.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKuEl6eo3Ha_gtavKb8xcSOVWeLMaRB1fmc3lPKdW_fjtzNdPiEG-hq_YJZtoVsxYX-CWCH0zgkq47QO7bny7R1Yi-fJkzaheJxaCNhse2hTpFD8JpKhx8YRAOSXaCAGAoeKmlDLSAscI/s200/IMG_0788.jpg" width="150" /></a>I seriously could go on and on about these small little inconveniences that kept happening this round. They really don't matter that much by themselves but they kept building up and really had us feeling disconnected from the hospital team. We saw him as being happy and healthy (his blood counts were good, and he was feeling well) where doctors and nurses seemed on edge and uneasy over the smallest things. We questioned ourselves if we should be more concerned and cautious as well. Were we missing something? By mid week his counts started to come up again and we were in the clear. No fevers, infections, or virus's materialized despite the doctors worries thankfully. (Side note - I'm a tad OCD and disinfect the room three times a day haha).</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUckWRiS8ozh9DGNCM3H0H3ypx_E8AerueY7JBlNXTcBnDm_ZVD0UU44Dy6TQKeudt77gzxuRSna0g-noViOvjTbXCkOFASjnzTyZ3s10gICprQtAPyYmMpJ5Z4uJa6ybs49FegVIz0Xw/s1600/IMG_0772.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUckWRiS8ozh9DGNCM3H0H3ypx_E8AerueY7JBlNXTcBnDm_ZVD0UU44Dy6TQKeudt77gzxuRSna0g-noViOvjTbXCkOFASjnzTyZ3s10gICprQtAPyYmMpJ5Z4uJa6ybs49FegVIz0Xw/s200/IMG_0772.jpg" width="150" /></a>Finally we were discharged! The weather has been warm and we got outside to enjoy it - forgetting about any other chores and things for the time. We needed this break and enjoyed being together as a family again - a small glimpse into the future and something to hold onto as we head back into another hospital admit and more chemo.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhMyvnsX7XSSl73MjilE1xHxkzPfSi0fDR7E8DHlRMDGEROODZa-2xdYAihzQdGdGhDZpWLpzhyOZdmj7YneBfIhED-t2e6rSorNhZi_Hbm4dDQCWRxh7y65PiF58Xdgecgyg3SI-jtC-o/s1600/IMG_0781.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhMyvnsX7XSSl73MjilE1xHxkzPfSi0fDR7E8DHlRMDGEROODZa-2xdYAihzQdGdGhDZpWLpzhyOZdmj7YneBfIhED-t2e6rSorNhZi_Hbm4dDQCWRxh7y65PiF58Xdgecgyg3SI-jtC-o/s320/IMG_0781.jpg" width="240" /></a>The BMA (bone marrow aspirate), the BIG one, was done this past Friday (March 24th). Sebastian also had his broviac line changed as his last one was blocked and not working properly. To get these two procedures done together so Sebastian only needed to be put under anesthetic once, was another huge headache I wont go too deep into. Basically there was a miscommunication on times between the two teams as different doctors do each procedure. We were told different places to go for admitting, different and wrong explanations on how the line was replaced, didn't know which doc was doing the BMA, and told different start times - even re-scheduled once. Just when we thought we had it all figured out, waited our allotted time in clinic, had gone up to the induction room for the surgery, they realized both teams had the time wrong and we were sent back down to wait more. Sebastian was so hungry he was nearly inconsolable. How do you tell a 9 month old he can't eat for ten hours?</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOAf4-aXJcVG7cjs87SITc90Tfun6096KCMjt19Dgq2POXPKKnGNOoPBsdRxirgfNnfEQs4o00_EpohA8UOqpmWi3aTvDg8lTyeSruEm8blmpSbgOjnIv5LVjW1IY5mu9cHzAhr1t0b4E/s1600/IMG_0795.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOAf4-aXJcVG7cjs87SITc90Tfun6096KCMjt19Dgq2POXPKKnGNOoPBsdRxirgfNnfEQs4o00_EpohA8UOqpmWi3aTvDg8lTyeSruEm8blmpSbgOjnIv5LVjW1IY5mu9cHzAhr1t0b4E/s200/IMG_0795.jpg" width="150" /></a></div>
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We finally got him in, the procedures done, and enjoyed a beautiful weekend at home. We get the BMA results on Wednesday, and also get admitted for the next phase of treatment (Consolidation Phase), which goes ahead no matter what the BMA results show. </div>
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Finding it really hard to stay positive, optimistic, and not complain about everything. Life seems to be at a standstill while we wait for the chemo to do its thing and the results of the last bone marrow biopsy so we have a better understanding of our path ahead. Everything I can cross is crossed. Trying our best not to think about it and worry. Cross that bridge if and when we come to it.</div>
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Terrahttp://www.blogger.com/profile/14631528262963150914noreply@blogger.com2tag:blogger.com,1999:blog-5770509328661642720.post-58697058645489857612017-03-12T16:50:00.000-07:002017-03-12T16:50:02.636-07:00Back on Track<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjP3-7gCTxxsr40Dr4VopyVb_16akbc-4OcaZFjvTJchB5nYXPHUhxDUJIHNjjFlCf1OU0n8dV3ahX5lSakE03pwDRfhcSu9yJ9V6mX2jtMZT7qdFnZc1GPaQNxGCU7qAzna5_yK3BqV48/s1600/IMG_0610.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjP3-7gCTxxsr40Dr4VopyVb_16akbc-4OcaZFjvTJchB5nYXPHUhxDUJIHNjjFlCf1OU0n8dV3ahX5lSakE03pwDRfhcSu9yJ9V6mX2jtMZT7qdFnZc1GPaQNxGCU7qAzna5_yK3BqV48/s320/IMG_0610.jpg" width="240" /></a>What a roller coaster couple of weeks! After the first Methotrexate (MTX) round, delay in clearing, and high toxicity side effects, Sebastian started the next round of MTX chemo two days late (Thursday Mar 2nd). The doctors started him with extra fluids earlier for his second round, and he ended up clearing the MTX in two days as normally expected, and without the extra swelling or skin breakdown we had last week. Friday morning Grandpa and Grandma Knutson were back in town from a trip to Phoenix, and they came to the hospital for a visit. They brought Bash a fancy new hat! I'm not sure who was more excited the grandparents or Sebastian. Bash also turned 9 months last week! Time is flying by.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgAF5bln6KUC2js_bW__y65hUkA36dDFvaR1GXTtmhZvXBlo_MWE2Zc8DOH0ob1WErn6sEo0EUXZs7RiAGAy8lH_Hvb14qHn5W2y2rWZMc82B2nVPWxCHz_pHvxJOZgiB3tuuf0vh6gOoc/s1600/IMG_0629.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="170" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgAF5bln6KUC2js_bW__y65hUkA36dDFvaR1GXTtmhZvXBlo_MWE2Zc8DOH0ob1WErn6sEo0EUXZs7RiAGAy8lH_Hvb14qHn5W2y2rWZMc82B2nVPWxCHz_pHvxJOZgiB3tuuf0vh6gOoc/s200/IMG_0629.JPG" width="200" /></a>He did really well this past round and we were discharged home on Sunday night as his next chemo would be due Thursday. We had a lovely 4 days home and it was great to sleep in our own beds without interruptions or IV alarms ringing off. Grandma cooked so many delicious meals, and grandpa would get up early so Nate and I could sleep in a little bit. On Thursday morning (Mar 9th) we returned to the hospital for more chemo. We started out in the out-patient clinic at 9am, where they draw blood and send it to the lab to make sure Sebastian's counts are ok to start his next chemo. There is a lot of waiting around in clinic. after his blood work was taken the nurse did a quick checkup. Then we waited again and the doctor came and did another checkup. More waiting. Once his lab work came back and his counts were good, the doctor gave the go ahead to start. Then the chemo was ordered and they make it from scratch in pharmacy, more waiting. This chemo round is given while in-patient so we had to wait for a room in the oncology unit. We waited in a 'room' (basically a crib in a hall with curtains around it) where Bash was hooked up to IV fluids while we waited for the chemo to be made. We tried to get him to nap - hard with a baby who is such a light sleeper to begin with, in a new environment, in a noisy hallway with other patients around, announcements on the hospital intercom, and nurses coming to check on him constantly. We didn't get a bed on the unit until almost 3pm, and our chemo still wasn't brought in from pharmacy.<br />
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Once in our new room, another check up was done and the chemo finally arrived and was started. This round he gets <a href="https://en.wikipedia.org/wiki/Cyclophosphamide">Cyclophosphamide</a>, <a href="https://en.wikipedia.org/wiki/Etoposide">Etoposide</a>, and <a href="https://en.wikipedia.org/wiki/Mesna">Mesna</a> - No more Methotrexate this round thankfully. The new chemo's he gets can cause bladder irritation and bleeding, the Mesna is to help prevent that from happening. These drugs are given by IV over 2 1/2 hours, Mesna over 4 hours, daily for the next 5 days.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkmNim1p6l1vqeJds6m2xHCfDT5oXVPyX7EIhwq78FLJmAS1IKWcq-1MVACMn7ZjAM2G-8x0yeCiANulGwPk1KDY6ngno70x9fjCJhrvW0VN315EphRm7L1dBp6Ez2ccJ7QX5MLJSoGS8/s1600/IMG_0642.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkmNim1p6l1vqeJds6m2xHCfDT5oXVPyX7EIhwq78FLJmAS1IKWcq-1MVACMn7ZjAM2G-8x0yeCiANulGwPk1KDY6ngno70x9fjCJhrvW0VN315EphRm7L1dBp6Ez2ccJ7QX5MLJSoGS8/s320/IMG_0642.jpg" width="240" /></a>Bash was an overtired, emotional, nauseated mess on Thursday night and was up every hour or so. We got him on a better schedule for anti-nausea drugs the next day and he had a couple good naps and slept much better the next night. Because he is so nauseated he isn't eating well and the doctors have been really pushing for that nasogastric tube to be put in. I begged for one more day on Friday as I still feel his fluid intake is sufficient, its getting him eating thats the trouble. Our nurse agreed she doesn't think we are at the point of inserting a tube just yet, we need to get on a better anti-nausea regime. I'm afraid if we put the tube in he will feel full and wont eat for that reason and if he is already drinking well it seems silly to put it in to give him what he is already willingly drinking. His weight has been stable, and I agree with the doctors that we want him to grow, but I'm just not ready to accept that he really needs it yet. I'm hoping after this last chemo round and a bit of a break that he will feel hungry again and we can find some foods he will eat. If not then I will grudgingly accept the stupid tube that is giving me so much stress and anxiety.<br />
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Saturday night we were given an overnight pass home - yay! As we were leaving the hospital Bash started to feel warm to me but his temperature was ok. We got home, had supper and he started getting really fussy and did have a fever of 38.1 - If he gets a fever at home of 38.0 we are to monitor it for one hour and return if it remains. If he has a fever over 38.3 we have to bring him back immediately. We monitored him closely for an hour, we had our bags packed up and were ready to head back to the hospital. 38.2 was his highest temp, then thankfully his fever broke. I called the unit to be sure they wouldn't want us to return and we were told to watch him closely overnight and return if it spiked again. It didn't and we decided he must be teething - knock on wood. If he gets a high fever they start him on a 10 day course of antibiotics, pause the chemo treatments and we wouldn't be able to leave the hospital. We really don't want another setback or delay in his treatments.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEieVIxFl6XSCURvGsQswcCEFgtFvYEpLrvwJknV-SjveBwnkimv7HoyYmSyJumWjx2MLYaTZvROgu0EhtQJWPiK35eSVWAskRPJhMAqRKWIsVf1pa7c9bXH0js45SE_uWJWAHXAwlDr8H0/s1600/IMG_0646.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEieVIxFl6XSCURvGsQswcCEFgtFvYEpLrvwJknV-SjveBwnkimv7HoyYmSyJumWjx2MLYaTZvROgu0EhtQJWPiK35eSVWAskRPJhMAqRKWIsVf1pa7c9bXH0js45SE_uWJWAHXAwlDr8H0/s320/IMG_0646.jpg" width="320" /></a>Bash has one more day of chemo after today (Sunday Mar 12) and we will hopefully be discharged home until the next phase. He has an out-patient appointment booked already for March 20th where he gets <a href="https://en.wikipedia.org/wiki/Granulocyte_colony-stimulating_factor">G-CSF</a> (Granulocyte colony-stimulating factor) which will stimulate his bone marrow to produce cells. They do this as an injection into fatty tissue and he gets 6 doses, the first in hospital, then the others at home twice a day. On March 23rd he is scheduled for a bone marrow aspirate - the <u>Big</u> one that will tell us what our next plan of attack is. If they find Blasts (cancer cells) in this one then he will need a bone marrow transplant. If there are no Blasts then we continue with chemo onto the next phase (Consolidation Phase).<br />
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We are looking forward to some much needed rest and recuperation in the coming days and have all our fingers and toes crossed for remission. You got this Bash! We all love you so much! #teambashTerrahttp://www.blogger.com/profile/14631528262963150914noreply@blogger.com0tag:blogger.com,1999:blog-5770509328661642720.post-80125078341590604042017-02-27T19:56:00.000-08:002017-02-27T21:21:06.661-08:00Phase Two<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjmJ8I3Rth8WBvbJI0BhbNzf9JgkBnA169RSYPfmemSlRmORA4zoIpycmlAjnZGjDSo9fLMmzdMKl7a2neYsP9GVydy_gyDACmdHTknjQbotnrXYJz_9Nx-fiCuvqp6sExqc2DvLId0QvE/s1600/IMG_0556.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjmJ8I3Rth8WBvbJI0BhbNzf9JgkBnA169RSYPfmemSlRmORA4zoIpycmlAjnZGjDSo9fLMmzdMKl7a2neYsP9GVydy_gyDACmdHTknjQbotnrXYJz_9Nx-fiCuvqp6sExqc2DvLId0QvE/s200/IMG_0556.jpg" width="150" /></a>This past week has been a rough one. After our lovely long weekend at home, we returned to the Oncology unit Monday night, they took Sebastian's blood and his neutrophils were 1400! Well above the 750 count needed, he was ready for his next Chemo phase to start. Bash went for his bone marrow aspirate and lumbar puncture Tuesday morning. It went really well, he was given the <a href="https://www.cdhb.health.nz/Hospitals-Services/Child-Health/Child-Haematology-Oncology/Documents/Methotrexate-(Intrathecal)-Parent-Caregiver-Information.pdf">Intrathecal Methotrexate</a> in his spinal fluid and once back in his room they went ahead with his IV <a href="https://en.wikipedia.org/wiki/Methotrexate">Methotrexate</a> (MTX), it runs for 24 hours and they run intravenous fluids called <a href="https://en.wikipedia.org/wiki/Sodium_bicarbonate">Sodium Bicarbonate</a> with it to help break down the MTX. This chemo is extremely hard on the body and we want to get it out as fast as it goes in. He tolerated the first 24 hours so well, started to get a bit puffy from all the fluids on Wednesday.<br />
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By Wednesday evening his kidney function was starting to show signs of strain. The <a href="https://www.drugs.com/cdi/leucovorin.html">Leucovorin</a> drug he was getting to help rid his body of the MTX wasn't working well. His little body showing all the symptoms of chemo toxicity. To protect his kidneys and other vital organs, a special medication called <a href="https://en.wikipedia.org/wiki/Glucarpidase">Glucarpidase</a> (an MTX antidote also known as <a href="https://en.wikipedia.org/wiki/Carboxypeptidase">Carboxypeptidase</a>) that they didn't have on hand was ordered from Vancouver. Bash was put on cardiac monitoring overnight and his blood drawn every 6 hours to check that the MTX levels were dropping. <a href="http://www.theoncologypharmacist.com/top-issues/2013-issues/may-2013-vol-6-no-2/15792-preventing-methotrexate-toxicity-know-howtouse-leucovorin">Here</a> is a great article I found that explains how these drugs work for all those curious.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhHtXDE-am0KKFhGiw5Z8Fq_B5y6MER2W78fEEX4pxQGamWB8hXkThfXxlspS9EFxkCOZlGpm1JQarusTfLwfNxu3qqQP7zS4SOzio-MlLTQhJu_d9EhlJiA3KpE-bVJgugwxNj_7GAqnA/s1600/IMG_0567.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhHtXDE-am0KKFhGiw5Z8Fq_B5y6MER2W78fEEX4pxQGamWB8hXkThfXxlspS9EFxkCOZlGpm1JQarusTfLwfNxu3qqQP7zS4SOzio-MlLTQhJu_d9EhlJiA3KpE-bVJgugwxNj_7GAqnA/s200/IMG_0567.jpg" width="150" /></a>Thursday morning he looked like the Michelin man, so puffy his right eye almost wouldn't open. His skin started showing signs of breakdown, anywhere he had a bit of irritated skin seemed to flare right up. He has a blister on his thumb, and red sores on his fingers and toes. He started refusing to eat anything, including breast milk. I have been so worried about him getting a nasogastric tube, and have been trying everything to keep his weight up (full fat yogurts, even ice cream). As much as it hurts my heart, an NG tube may be a blessing in disguise, We're also worried he isn't getting the proper nutrition that he needs to stay strong.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgKRvgVAQtnP21shctHvlttakPZaOKRTWxukqOJ2sP_6vbIaeisqELEYN7geNbDVQW1s40aq7DBpUnGelkNURhvI8i0A3zSqOt5jfVQWmpCciHFMBXlo6SWvjyMb4OIyjYXkJ4K_T47xCc/s1600/IMG_0569.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgKRvgVAQtnP21shctHvlttakPZaOKRTWxukqOJ2sP_6vbIaeisqELEYN7geNbDVQW1s40aq7DBpUnGelkNURhvI8i0A3zSqOt5jfVQWmpCciHFMBXlo6SWvjyMb4OIyjYXkJ4K_T47xCc/s200/IMG_0569.jpg" width="150" /></a>Friday he started looking less puffy. His MTX levels had come down significantly but were still high, and intravenous hydration continued. The doctors increased his Leucovorin from every 6 hours to every 3 for Friday and Saturday. Bash continued to show signs of skin breakdown and was now refusing to take his medications he has been previously so great at taking. He was irritable and seemed to be feeling nauseated. As he can't tell us how he's feeling, it's a real guessing game choosing what medications would help him feel better.<br />
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On Saturday night Bash awoke with blood curdling screams, I quickly swooped him up, but no amount of cuddles would soothe him. I was terrified that something was really wrong, our nurse heard his cries and came to see him promptly. He was gagging and dry heaving and crying so hard. We both decided to give Gravol and Tylenol ASAP and she ran to grab both. Bash continued to cry and I'm sure he woke up the whole unit. He finally settled back down, I held him very closely for a long time, my heart ached for him and I would have kept him next to me in my bed if I could. Only 3 hours later he awoke with the same horrifying scream and started choking and gagging, vomiting up a huge ball of mucus. The nurse came quick again with meds in hand, and thought he must be pooling mucus secretions while he was sleeping and that <a href="https://en.wikipedia.org/wiki/Mucositis">mucositis</a> - another side effect from MTX toxicity was starting. He held on to me so tightly and did not want to let go, it took everything in me not to break down sobbing - I want to stay strong in front of him. I raised up the head of his bed to hopefully help his secretions.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6J3J-gUtNc9uhfOPYh2XcaaTWIxwgwZL9B0odbwI-3mz6gZMGrc9mNUC5BHE5wY1S7AiCRhy3t1TbL8_Cqev-EJO4Tgag-tGfJWx7HjmEaWBN3ly1XYXgMiAwDq9zgLWDaVb8PbqAYfg/s1600/IMG_0576.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6J3J-gUtNc9uhfOPYh2XcaaTWIxwgwZL9B0odbwI-3mz6gZMGrc9mNUC5BHE5wY1S7AiCRhy3t1TbL8_Cqev-EJO4Tgag-tGfJWx7HjmEaWBN3ly1XYXgMiAwDq9zgLWDaVb8PbqAYfg/s200/IMG_0576.jpg" width="150" /></a>Sunday the doctors thought about giving the Glucarpidase again as his MTX level still wasn't cleared out, but changed their minds and kept up the Leucovorin. His puffiness decreased quite a bit but he still looks different and his weight is up by a kilogram. It is unusual for it to take this long to clear the MTX level - I thought we would have been spending another weekend at home. Because it's taking so long to clear, we may have to postpone his next cycle and let his body recover first. We asked the doctors if they would skip this dose as he is to get this drug on day 1,8, and day 15, protocol says not to skip any as it could put him at risk of not being cured, which I completely agree with. We also asked about a change in the dose, is this too high an amount for him? The doctors said they will review the protocol but likely they will just push more fluids earlier next time and have the Glucarpidase on hand and available right away. Appears that our 3 week in-patient stint will be much longer than anticipated and unfortunately no passes as he needs around the clock IV fluids and medications. His electrolytes have been thrown off by all the fluids as well and he has needed a few infusions of magnesium and potassium as they have been dropping frequently.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4OQVjwUMJ2bXjTrGEwcbBRGewZm8f8riyu6rUuCLWxgxd-WVRvzYHQ_WJHZcGbEEwXfFSTPm5lPcownvyvW8WJX5KEdTMdxGkgA1XPUl2vzLhxh4ikyLknvFWSrr2FQjr5L2K5_dnD68/s1600/IMG_0573.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4OQVjwUMJ2bXjTrGEwcbBRGewZm8f8riyu6rUuCLWxgxd-WVRvzYHQ_WJHZcGbEEwXfFSTPm5lPcownvyvW8WJX5KEdTMdxGkgA1XPUl2vzLhxh4ikyLknvFWSrr2FQjr5L2K5_dnD68/s200/IMG_0573.JPG" width="111" /></a>Today (Monday) his MTX level was so close to being cleared, it's currently sitting at 0.19 and needs to be 0.1. His skin breakdown remains, but is no worse except for some mouth sores starting to pop up. We are putting Polysporin on his sores, and doing a mouth rinse 4 times a day when he'll tolerate it. Tylenol around the clock and Morphine when he needs it. He still wakes up after long naps with excess mucus accumulation, and we have suction set up at his bedside. Today after a nap he started choking and couldn't breathe for what seemed like eons (was really only a few seconds) - he scared us really badly. Crossing our fingers he is clear by morning and the next treatment goes better than this one. Two more rounds for this phase.<br />
<br />Terrahttp://www.blogger.com/profile/14631528262963150914noreply@blogger.com2