Checking In

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 chimerism 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. 

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.

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!

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!

Summer Lovin

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!

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.

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!

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.

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.

Fourth Boost

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.

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 (Donor Lymphocyte Infusion) and 10x the amount of his third boost in hopes again of causing some graft vs host disease which in turn would give us the desired graft vs tumor effect.

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.

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.

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 Icing Smiles Canada and Krista at Simply Sweet YYC 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.

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="">

Third Time's the Charm

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.

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.

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!

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.

We Could All Use A Boost

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.

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 cryopreservatives 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.

We had to wait three weeks after to do the blood test called a chimerism 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.

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!

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.

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.

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."

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!

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

A 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.

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.

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!

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: https://youtu.be/YlHkgR4R1aA

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!

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.

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.

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.

Love Terra, Nate and Bash.