Amaya has been feeling well! The local hematologist we work with doesn’t usually see many BMT patients so he voiced that he wanted to make sure Amaya was not displaying symptoms of GVHD because her eyes were itchy and red at times and he repeated at least 3 times he is not used to working with BMT patients which in turn made me really nervous (and I am also a very high anxiety person). Unfortunately I did my research and there is not a lot of Doctors with this expertise in Pediatric BMT patients that are close by my area, so being that he and I are still in communication with John Hopkins Doctors, the practice that did her BMT, I am working with it. I am still able to communicate with Hopkins by sending them photos talking to them on the phone and we actually will be going to Maryland for her milestones. Her 6 month milestone appointment is coming up April 28th. I will keep you posted with the results of her engraftment status. To be extra cautious I took her to a CHOP Opthamologist because she wears glasses and was due for an eye appointment anyways. I made them aware that she had a BMT and asked her to look at the health of her eyes and signs of GVHD. I felt great relief that her eyes look healthy and she told me that she did see signs of allergy but otherwise everything looked great and she got her updated eyeglasses prescription. Her hair is growing back really fast now and she is saying that is itchy as well, but her scalp has no signs of rash. She does appear to be getting pimples on her forehead at times and I was told by a Hopkins doctor that one of the meds she is on could cause that happen. Life since we have been back has been busy, we go to the clinic every two weeks, she is still doing homeschool until the end of the month and I constantly have to stay on top of her about doing her school work, her sister is also a handful lol and I am back to work. What I found with this process is that it definitely some work but with each phase it gets better. When she first got discharged from the hospital it was loads of meds she had to take. I think it was about 10 or more, now we are down to 5. Appointments use to be every week, now they are every two weeks. Eventually they will be every month and by May hopefully she will be back to in-person school. It’s not easy because recovery is a process and it does come with some risks that you have to look out for which can be scary, but I just pray for strength and also do my due diligence to follow up with medical professionals and stay on top of her health. Knowing that she now has a future where she can live a full life, pain-free, without as many limitations keeps me going. Her blood work has been looking awesome, her latest was a 13.5 hemoglobin! (we never came even close to that with any sickle cell meds) and her other blood counts have been recovering nicely. 🙂
