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!