Stem Cell Transplant: Day -8

Today has been a pretty good day.  Grandma, Nate, Ellie and I met Liz, Lily, Jen and the kids at Chuck E. Cheese for some lunch and fun.  Nate is just doing so well!  He doesn't tire as easily, he was running around playing everything and even climbed up in to a monster truck a couple times by himself.  He also ate almost 3 pieces of pizza!  It was a perfect send off.

We dropped Ellie off at Liz's, said goodbye to Grandma and headed over to the hospital.  He was tired and cranky in admitting and was asking (ok...screaming) to go up to his room, so he could take a nap.  As soon as we got in his room, he started making himself at home.  He hung his Valentine's Day window clings up, unpacked his bag of snacks and carefully arranged them on the shelf.  Child life brought in a pile of new toys for him and he started searching for places to put them in the room.  He was taken downstairs for a baseline chest x-ray and by the time we got back up to the room, his need for a nap apparently disappeared.  He spent the rest of the afternoon playing with his new toys and eating snacks.  He kept climbing in and out of the bed and wandering around the room to get himself things.  This was awesome for me to watch because normally, no matter how good or bad he is feeling, he is perfectly happy to park his butt in bed and bark orders.  He almost never gets out of bed without someone making him, so I hope we can keep up the activity as long as he is feeling up to it.

He fell asleep right before the nurse was able to come in to do his dressing change and had to be woken up for it. Dressing changes are no fun...being woken out of a dead sleep for a dressing change, is a real bummer. He did awesome as always (with a little screaming and crying) and was then hooked up to some fluids and heparin (a blood thinner that will help prevent liver problems that are associated with this chemo). He also received 4 yucky medicines and took them like a champ. The chemo drugs will start in the morning.

So...what exactly is a stem cell tranplant?

First, high-dose chemo is given to destroy any remaining cancer cells in the patient's body.  Then, stem cells from the child, previously collected, are given back through the central line to allow their bone marrow to recover from the side effects of the chemo.

High dose chemo, in addition to destroying the child's neuroblastoma, will also destroy normal marrow.  This will result in low blood counts that will increase the risk of infection or bleeding during the first 2-3 weeks (or longer) and could lead to death.  During this time the child will stay in an isolated room with special care attempted at reducing the chance of infection.  The child will need IV fluids and feeding, medication for infection, and transfusions.  The doctors will try to prevent or correct any medical problem along the way.  After marrow function is recovered, the likelihood of developing an infection or bleeding is decreased but will continue as a risk for several months.  If the transplant proceeds as expected, the child will spend 3-5 weeks in the hospital.  It may be necessary to spend a longer time in the hospital if complications occur.

Nate will receive high dose chemo on days -7, -6, -5, and -4.  Days -3, -2 and -1 are considered "rest days", where he doesn't receive chemo drugs but will continue to receive supportive therapy as his body starts to decline.  On day 0, he will have his stem cells infused.  I've been told that the actual infusion of the stem cells is pretty anti-climactic.  There is a chance for a reaction, so the doctor will be in the room during the infusion, but it doesn't take very long and most children handle it fine.  We've also been told that the preservative they use to pack the stem cells, smells awful.  It's been described as smelling like creamed corn and apparently Nate may smell like it for several days...yum!  The stem cells take about 10 days to graft, or "take" and Nate will be feeling his worst probably around day +4 or +5.

I like to think of the stem cell transplant process as similar to Nate's worst round of chemo...maybe, plus some.  He would be in the hospital for 5 days getting chemo, come home for 5 or 6 days, all the while declining.  Then, he would get a fever and end up back in the hospital.  The worst round had him in the hospital for 12 days, battling fevers, mouth sores, vomiting and diarrhea.  This will be very similar, the only difference is that he won't come home for the 5 or 6 days in between.  This time, he will also get his stem cells back to help his body recover, rather than sitting around waiting for it to recover on it's own.  The other advantage is that he will be able to get IV anti-nausea medication around the clock while we are here.  Nate's vomiting always was worse at home when we had to rely on oral anti-nausea meds.  I am optimistic that his vomiting will not be too bad and that his stem cells will help him bounce back faster than ever.

I think that's enough information for one day.  I'll spread the love over the next couple days and go over the chemo drugs he will be receiving.  If any of this bores you...feel free to skip to the cute pictures.  This blog is as much a way to keep everyone up to date as it is a record for myself and for Nate one day, if he's interested.  Some time yesterday, this blog surpassed 100,000 hits!  That is pretty amazing to me.  There are actually people all over the world reading about Nate and praying for him!

Thank you for following his story, spreading awareness and praying for Nate and all the other babies battling this horrible disease.