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.