Day +15

 Day +15

WBC: .7 (up)

ANC: 10 (same)

Hemoglobin: 7.3 (down)

Platelets: 6 (down)

With platelets this low, he earned himself another platelet transfusion.  We have been doing "volume reduced platelets" because of his allergies to blood.  This reduces the possibility of having a reaction to platelets.  However, the volume reduced platelets are manipulated and the quality of the platelets are not good.  Today they opted to pre-medicate him with benadryl and do regular platelets.

One of the potential side effects of the chemotherapy he received is VOD- Veno Occlusive Disease. As I understand it, the cells in your throat and mouth "slough off" leaving sores, and your liver can do the same thing, which essentially turns it into a sponge where it will absorb all the moisture in your body and cause you to hold a lot of moisture.  It can do a lot more damage if not treated. The good news is that they are looking very carefully for this and that it is an acute disease, meaning that if you get it, and catch it quickly enough, there are no lasting side effects and no long term issues.  There is a very small chance of getting this, but potentially a slightly higher chance of people with Thalassemia receiving stem cell transplants due to the effects of the iron on their liver over time.  The diagnosis is based on patients having 2 of the 5 symptoms of  VOD, and they suspect he has early stages of it based on his inability to hold platelets (meaning the platelets are all rushing to his liver) and weight gain.  

Because of the possibility of VOD, they now are requiring his Hgb to stay above 8 instead of 7, and his platelets to stay above 30 instead of 20, so he earned himself a platelet transfusion and a blood transfusion today.

Because UCSF was one of the study participants who helped develop this gene therapy, they have been doing this transplant for over 11 years.  They are absolutely on top of this and for that we are grateful.

We got to see Ana again today and in the evening Maddie flew home with Lisa, Emi and Ana.  We will miss her but I know she is ready to get home and enjoy the rest of her spring break!