Hi @sjjs
First, please accept my condolences for the loss of your son, Jason. I am a mother of four and cannot imagine anything more tragic than the loss of one of my children. Your having developed a foundation for other children who have the same diagnosis Jason did is a phenomenal and selfless gift of love. Those children and their parents have been truly blessed by your kindness.
I'm sorry to hear about your family and the difficult time you all are going through. Be sure not to forget yourself in all of this. It is important to stay on top of your labs, with further testing if and when needed.

Hemoglobin levels can get quite low before people become symptomatic. If you start dropping below 10 for two consecutive visits, are getting more fatigued than usual or having unexplained shortness of breath, it is time to see your hematologist for further workup. And of course, even without those parameters, you should reach out to him/her any time you feel unwell.