Today we reported to the clinic at 9:30 AM and were there until almost 2pm. There was a lot of information, signing papers and discussing plans and possible timelines. Unfortunately the telomere test that was done last week was sent to a different lab than the one Dr. Margolis wanted it to go to because that is where Aetna had it sent. This incorrect lab said results would take 14 days instead of the originally expected 7. Furthermore, once the tubes arrived there the tests were placed on administrative hold for an unknown reason. So the results are significantly delayed. In fact that test was redrawn today and sent to the preferred lab who expects to have results Monday or Tuesday. We tried to expedite the test because of Naomi’s critical ANC but that doesn’t seem to work much due to the testing process.
Taking turns playing Mario on the iPad.
Today her clinic visit included HLA blood tests to prepare for 2nd transplant, CBC to check for immediate transfusions and strategizing. Today’s ANC was 19. With such a very low number, we are on high alert monitoring for fevers and physical symptoms. Her Dr does not admit to the hospital for low blood counts but only for symptoms. So she is still an outpatient with me at the RMHC as long as her good health continues. She was infused with an antifungal “caspofungin” and G-CSF to try to boost that number. Her platelets dropped from 60 Sunday to 27 today, Tuesday.
Due to her low platelets, she will need platelets tomorrow. She is also scheduled to have pre-transplant procedures: echocardiogram/EKG and the pulmonary function test. Her daily clinic visit will include the antifungal and G-CSF.
After clinic, we went to the RMHC and had lunch. Then Micayah needed to report to the lab for donor testing.
Due to the delay in results for the telomere testing, we are proceeding with donor tests for Micayah but won’t actually begin chemo for Naomi until those results are firm. In the meantime, we’ve found 7 unrelated matches HLA donor possibilities in the database. They are doing more sensitive screening on those donors to see which is best as a backup to Micayah.
Micayah will need a good meal tonight after donating 16 tubes of blood to the lab.
We also gathered information from her first transplant facility. We were surprised to see how low a dose of cytoxan Naomi was given at COH compared to what is normally given. He is trying to confirm that there was not a typo in that paperwork and we will know that likely tomorrow. If the dose was indeed as low as it appears on paper, then it is no wonder she kept her hair during her last transplant and we are back where we are. He is also looking at the idea of not using ATG on her because her body has now seen ATG twice and he thinks she needs something else. That is a work in progress. He is fairly certain that he wants to avoid radiation for her though.
The next few days are shaping up to be very busy with tests for Naomi, psych evaluations for both Micayah and Naomi, social worker meetings, CT scans, and her PICC line will need to be revised into a 2 lumen.
All in all we are doing well. Tonight we will enjoy dinner as Naomi is no longer facing food restrictions. They said she can eat whatever she wants, even raw foods, but to use common sense and know where the food comes from. Like no salad bars. Her appetite today has been good. She has been active, and a little resistant to doing school work. So it sounds like a normal childlike day to me. I love that none of her doctors came in with a white jacket. The gear for nurses is a CHW shirt and scrubs. They’ve been baptized by Naomi’s sense of humor and tricks too. She has made herself adored at yet another hospital. Not sure how she manages to do that so fast.
After all of the conversation today, we have the following understanding. Basically there COULD be 3 causes to her current AA relapse. NOT ALL OF THESE ARE THE CAUSE BUT POSSIBILITIES and what we are examining during these days before coming up with a transplant protocol:
1) Bad “soil” in her body. Not much we could do about that.
2) Her immune system was not suppressed enough during the first transplant and her WBCs are back. Even just a small amount of her own WBCs could be causing this issue (and likely is).
3) Micayah’s cells were not good for her. This is less likely, but why we are looking at other donors and waiting for those telomere results before proceeding.
We greatly appreciate all the prayers as we brace ourselves each day to get through as well as we can and wait for results ASAP. It truly is a walk in faith. Her existence is a miracle and that we are here in this place right now getting her the best treatment available is also a miracle.