We checked in yesterday, his ANC was 840. We’re in North, but I was able to put all our stuff away, basically, using some creativity. It’s fine :)
So, he already got one round of chemo for this phase (nelarabine) last time we were here, and he’s getting 3 chemo drugs during this stay. Two of them, cytoxan and etoposide, are heavy hitters and are already causing him headaches, nausea and vomiting. Those are for 5 days. The third is a teeny shot of clear liquid, called bortezomib, injected into his picc on days 1, 4 and 8. It can’t be more than 1/2 a teaspoon. Cytoxan is a more broad-spectrum chemo drug, if I understand correctly, and he’s had it before. Etoposide and bortezomib are both fairly new, and they target t-cells, where Ben’s leukemia is lurking (nelarabine does this too). The goal is to get him down to a negative MRD – Minimal Residual Disease. Mark and I learned today that having a negative MRD doesn’t necessarily mean it’s gone, it just means that it’s gone enough that it’s no longer detectable with flow cytometry.
So the chemo will go for 5 (and one more on day 8) days, and his counts will plummet. Then they’ll let him recover a while here, so he doesn’t catch any bugs outside the hospital. If he’s feeling good and he’s overall healthy, they can potentially let him out on a pass for a couple hours on Christmas day. (Even if we don’t get out, it will be ok, the family will come here. We’ll make it work!) They’ll do a bone marrow aspiration to check on the success of the chemo, and if he is at negative MRD they will pat themselves on the back and hand us over to the transplant team. If he’s not at negative MRD, they’ll have a meeting with the transplant team and discuss whether his best option is to go another round of chemo or to go straight to transplant and hope for the best. Dr. O’Brien, with whom we met today, told us that they do lots of BMTs here and sibling matches are considered a walk in the park, something they practically look forward to, from how she made it sound. Every time she leaves the room, I turn to Ben or Mark or whoever is with me and say, “I really like her.” She’s great with Ben, she’s funny and thorough. I like all the doctors here, but she’s one of my favorites.
After Ben fell asleep and Mark left, I decided to run to the target up the freeway to get a couple things. I opened the door to the hospital room and standing in the hall was a doctor who said, “Ah! I was just hoping that you’d come out! I’m your doctor on the transplant team, Dr. El-Bietar.” I was so excited to meet him! Dr. Mangino has said such wonderful things about him. It was all true. We sat and he went over a lot of what Dr. O’Brien already covered (I heard he likes to talk, but I like to hear the details several times, so that was great) and I heard new things and got to ask questions.
So what Dr. El-Bietar expects is for the transplant to happen the 2nd, maybe 3rd week in January. The week before, Ben will be inpatient. He will get a combination of radiation therapy and chemotherapy to completely kill all his bone marrow, in preparation for Josh’s bone marrow to take its place. They used to think they had to inject the bone marrow in various places of the body, but have discovered that the stem cells in bone marrow are very smart, and will go where they need to and plant themselves and grow, so they only need to put it in his iv. It takes 3-4 weeks of watching Ben like a hawk to make sure he’s not developing Graft vs. Host Disease or getting a fever or infection or any kind of illness, and if he does, they will immediately treat with whatever it takes to keep him disease-free. So that’s why nobody ever goes in or out of South. Everyone is sitting and watching their kids and scared to bring any bugs onto the floor, probably. I was going to try to be funny there and make a joke but that’s how I think I’m going to be. The doctor said that the radiation and chemo that they give him right before is at such high doses that he will be sicker and weaker than ever before. He will definitely get mouth sores and won’t be able to eat, most patients get on TPN (that stuff that gives you nutrition through your iv) and he will have pain meds that he can push a button and self-administer. (He heard that part from Dr. O’Brien, he thought that sounded awesome.)
Anyway. We are grateful to be here and to get the ball rolling. We’re grateful for LuEtta and for Dave and Andrea who, even on their death beds, allowed her to come. We’re grateful for our wonderful friends who bring us dinners and treats and offer to give rides to our kids and sit with Ben, and so many other things! We’re grateful to all of you, our friends and family, for your good thoughts and prayers and kind messages. I was feeling a little down yesterday and after wallowing in the mud for a few minutes, I knew exactly how to cheer myself up, I read your messages and they inspired and encouraged me. Thank you so very much! I have the best people in my life.