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.

Week Three - Engraftment!

Week three and time started to drag on and being at the hospital started to really 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! 

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. 

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. 

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.

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.

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.

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 ❤️ Bring on the sunshine! 

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. Keep it up bud! 

Week Two Post Transplant

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.

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.

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.

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.

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!

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.

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!

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). 💚 Love you baby boy!

Week One Post Transplant

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 very 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.

Day +1. Bash got a nasogastric tube inserted so we could feed him and give him medications more easily. The nurse only 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!

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.

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.

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. We got this.

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. We are so glad he's feeling better! 

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.

A week since transplant! Day +7 started with another diaper blowout, I believe all lines had to be changed again, but no pukes. 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!

Ok so there you have it - week one...

Re-Birthday

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.

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 - Fludarabine, 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.

Day -6 fell on July 1st, Happy Canada Day! Bash received more Fludarabine as well as Treosulfan - 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 urologist 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 Ativan 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!

He got the same two meds on day -5, then started an immunosuppressant drug called Cyclosporin on day -4. He also got Anti-thymocyte globulin (ATG) 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. 

Day -3. Happy 4th of July! He got his last dose of Fludarabine, and more ATG. He was started on TPN (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!

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 (Thiotepa) 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.

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.

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. 

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!