+ 1 year and 20 days

It has been a while since I have given a full update. We have been waiting, waiting, waiting. Results from evaluations have been slow to come in. Some stuff has been very positive – good cardiac function, even some improvement; good bone scans and bone age/density tests. But her tcell count was still quite low requiring that Naomi continue to get Pentamidine monthly until that changes. Her chimerism results are not yet back from CHW. That will determine if she can begin to wean from tacrolimus and acyclovir. That will also tell us if she still needs nightly hydration and antifungal infusions. So things are in a holding pattern and it is looking like she will keep her central catheter for at least a few more months.

The hardest thing has been watching her hemoglobin and red blood cell counts trend downward over the past 3 months. She hit a low of 10.0 this week. After being up around 11.5-12 for so long, this is difficult to accept. Extensive tests are being done to check the cause of this secondary anemia. Her dr wants us increasing her iron containing foods because her iron was surprisingly low – so it could be just dietary. It could be that she is fighting illness after illness during what has been an awful sick season for our family this year. So her marrow is working hard to stay healthy. But they are also checking hormone levels, and even checking for other possible bone marrow disorders. It has certainly been hard to see Naomi dealing with this. She is doing surprisingly well emotionally with the process.

As a distraction, she continues to dance and bake and play in the spring sunshine. We pray that her immune system will stop getting hit with illness after illness and her hemoglobin/red blood cells recover soon.



Today was a quick lab appt. Naomi’s hemoglobin and platelets were a bit lower this week. She was at 237 platelets; hemoglobin 10; ANC 3800. She has seemed very tired lately and lacking a bit of focus so the low hemoglobin wasn’t a huge surprise.

Over the next 2 weeks, she will have a series of tests: echocardiogram; bone age test; bone density test; and kidney filtration test. Since her creatinine and potassium have become an issue over the past 2 months, the kidney function test has become necessary. The dr here is also reaching out to Dr. Margolis to get a weaning schedule/plan for Naomi. We are all a little anxious to start coming off meds and seeing what her engraftment levels are. Those tests will be drawn next time we are in the office – in 2 weeks.

She was so excited to be able to put her hair into a ponytail!

Naomi was invited to skate at the Golden Knights practice arena. Her and Aaron had a great time. It was her first time on ice skates ever.