Today we woke up to some good news that Idan’s Absolute Neutrophils Count (ANC) is up to 576. As you may recall from our previous posts, the neutrophils are part of the white blood cells. They are therefore part of the body’s first defense against infection and form an essential part of the innate immune system. The ANC coming in is the first sign of engraftment, and, once Idan has over 500 for three days, they will consider him “engrafted.” Of course we will not know if these neutrophils are the donors or Idan’s for a few more weeks, but we are working under the optimistic assumption that they donor cells.
If all continues to go well, we may be able to be discharged earlier then the 2-3 weeks we thought we had left inpatient. Possibly even at the end of next week. Our goal today and for the next few days is to wean Idan off any meds he does not need and switch the rest of his IV meds to oral. Since he has not been in pain in a few days, we have been weaning the Dilaudid and today we stopped it all together (along with the 2nd continuous narcotic drip he had to counter act the itchy affect of the Dilaudid). We also discontinued the oral Zofran we started a couple days ago, and so far Idan has not been nauseous. Tonight we will switch his continuous IV drip of tacrolimus to oral at 9PM as well. Tacrolimus is a chemo drug that Idan will be taking for the next 6-12 months to suppress his immune system and allow the donor cells to come in very slowly to reduce the risk of developing severe graft vs host disease (GVHD).
Idan was thrilled this morning when we woke him and told him the good news about his ANC. He was in a good mood all morning, enjoying another drum session with the music therapist who already knew all his favorite songs by Twenty One Pilots. He then had a great session with one of the great teachers that have been volunteering their time and had a good lunch. He then jumped back into bed and took a 4 hour nap 🙂 Got to have energy to make those cells keep growing.
It is a long long long road ahead with more dangers then one would like to outline here. Once we transition to outpatient, the journey will still only be in its infancy. We will have to wait two more weeks to test his chimerisom for the first time to see what percentage donor his cells are. We have to hope that Idan does not get GVHD, or more realistically to hope that the GVHD is acute and mild. We hope that he stays virus and infection free and has no reactivations of any viruses hiding in his DNA. And we hope that his new immune system continues to grow and thrive as we wait for it to become fully functional.