For those of you who "got used to" the regular postings of Simon's blood counts, here's the good news we got today. As they say, he's "holding his own." Simon was discharged from the hospital on Day 15 post-transplant. He is now at Day 26. In the past 11 days, he has received transfusions only twice: once for platelets only and once for both platelets and red blood cells. He had a bit of a cough for a couple of days last week, but now that's cleared up, too.
His biggest challenges are in getting his engergy and appetite back. He's doing quite well with foods like noodles, bread, and (the all-time favorite) goat cheese. As a post-transplant patient, he's not allowed to have raw fruits and vegetables unless they can be peeled and seriously cleaned. The potential of food-born illness and diseases caused by other germs is a big deal for us right now. Simon remains at risk for a variety of infections: bacterial (although he's through the worst part of this one), fungal (like yeasts, etc.), and viral (the hardest thing for an immuno-suppressed person to regain the ability to fight).
The other main way of protecting him is to keep him away from groups of children, where germs are most likely to lurk. Unfortunately, this includes keeping him out of kindergarten for the fall. Simon was so looking forward to starting school. We were unprepared for the fact that his doctors would want him out of school for a full 100 days after transplant. Well, we've got 74 days to go.
To give Simon a sense of connection with starting school, we have worked with the school district to have a homebound teacher assigned to him. Her name is Denise, and she started coming last week. Simon and Denise are working together to figure out what kindergarten at home means for him. We are trying 1-2 hour mornings so far. Simon thinks it's pretty neat to have a teacher come to him, but he's a little impatient with doing anything that feels like "schoolwork".
Mary and Markus are still trying to figure out what it means to maintain our professional lives and have Simon at home full time. Miriam is currently going to Linda's 5 days a week, and still going to music class on Tuesday mornings at Gari Stein's, too.
The big news about Miriam is that she turned THREE on September 20. She is a dashing three-year-old, full of conversation and songs. At her very fun birthday party on Saturday, friends helped fill her dress-up chest. Kids and grown-ups alike had fun trying on the wonderful stuff she got. And Miriam hasn't spent a day since without her beautiful Barbie-Rapunzel dangly earrings hanging from her ears.
We are updating the page Diary of Simon's Stem Cell Transplant as often as possible. Until Simon gets out of the hospital (maybe September 10), we'll be focusing on that page for updates. You can reach it directly from the TREATMENT page, or from the link in RECENT UPDATES from the home page. For those who like quick summaries, read on here!
Simon is progressing "as advertised" through transplant (according to Dr. Ken Cooke, the Bone Marrow Transplant attending who has been "on the service" since Simon's admission). He is now in the "worst part", which is days 4 to 10 after the transplant. (If you haven't had a moment yet to read our Stem Cell Transplant Frequently Asked Questions yet, please do!) No, Simon did not have surgery to get this transplant.
Transplanting bone marrow is a different task than tranplanting an organ. As Dr. Yanik explained, you have to kill off the lawn with fertilizer to get rid of the weeds. Then you have to reseed it and wait for it to grow. In this case, Simon's old bone marrow (with metastatic neuroblastoma cells in it) had to be killed off with chemotherapy. The stem cells were infused to take the place of his former bone marrow. Eventually. We are now in the waiting period for the stem cells to work the magic of rebuilding Simon's bone marrow, which is the blood production factory of the body and the basis of the body's immune system.
Simon's life is not fun right now. He's on a pump that delivers narcotic pain relief (currently Hydromorphone). He has discomfort and pain in his entire gastro-intestinal system, including his mouth. He spends his time dozing the half-sleep of the drugged, responding to desperate bowel and bladder urges, receiving touch therapy to ease his pain (from Mary and Markus), and tenaciously resisting invasions like oral medicines, baths, and mouth care.
When he is feeling a little perkier, he sits up to color in bed, listens to books (Grann is really good at reading with Simon), and watches videos. He often calls us over to "sit with me" or "lie with me". It isn't much fun, although cuddling with Simon is always nice. You have to know him pretty well (and we all do, including the hospital staff) to notice his tiny, fleeting, but oh-so-lovely smiles when he can squeeze one out.
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