Monday, November 13, 2017

100 Days and Onward

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 acyclovir 2x daily, Septra on weekends only, and an enoxaparin 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!

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 broviac line 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.

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).

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!

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 chronic Graft vs. Host disease. 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.

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.

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.

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.

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.

Thursday, October 5, 2017

10 days to 100

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 (Cyclosporin), which suppresses his immune system making those fighter cells 'lazy' so they won't attack him. With the wean there is potential for graft vs. host disease (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. 

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 creatinine, urea, and potassium. With these lytes balancing out, we can also drop off of giving Kayexalate 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.

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! 

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 Acyclovir which he currently needs 4 times a day. We can stop fluconazole completely. If his broviac line 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!!!

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!  

Monday, September 18, 2017

Days +50, +60, and +70

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.

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 Kayexalate 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!

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.

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 chimerism 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.

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!

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.

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.

Thursday, September 14, 2017

Week Six

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.

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, show how big he is, flex his muscles, 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.

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. 

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. There was also talk about it being switched from IV to oral, if that happens we may be discharged sooner than the 25th!!

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! 

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.

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 - '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. He's doing great and we are so proud of him. We love you Sebastian!

Friday, September 1, 2017

Small Detour

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.

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.

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 Streptococcus Salivarius 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 Pip-tazo and Vancomycin to Ampicillin 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.

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! 

Week Five - A Rollercoaster Week

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.

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'.

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.

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!

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.

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 we are so excited to have you home!

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. 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! 

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 today!!! What a little ham! He loves the attention. A small bump, the suns still shining bright though.

Thursday, August 31, 2017

Week Four - An Immune System

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. 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.

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. 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.

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. 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! 

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.

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!

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! 

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.