The road to transplant

It 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, High Dose A-RAC.

We met with the bone marrow transplant (BMT) team on May 10th and got the latest info. We have two 10/10 HLA bone marrow 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.

There are three stages Bash will go through for transplant:
1. Conditioning (to prepare his body)
2. Stem cell/bone marrow infusion (like having a blood transfusion)
3. Engraftment (donor cells find their way to the bone marrow and start to grow)

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 veno-occlusive 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.

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.

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 engraftment 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 graft vs. host disease (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 first 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 graft vs. leukemia effect which may mean he is less likely to relapse.

Bash will be given 2 drugs to prevent GVHD:
- Cyclosporin - given 2x day for 2-3 months
- Methotrexate - given 4x after the stem cell infusion.

Chronic GVHD occurs after 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.

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.

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%). Here and here 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.

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.

Giant Pain in the Neck

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.

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.

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.

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.

He then got mucositis 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, TPN (total parenteral nutrition) 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.

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.

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.

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.