New Chemo Today and Success Rates

Today Cael starts the new chemo, and with it a few new medications. The new chemo, Cytoxan, may affect the kidneys and liver, so he is on some extra medications to help prevent any issues for either of those. They have also increased his fluids a lot and added some lasiks (diuretics) to help him pee a lot, which will help keep his kidneys clear.

He has done great so far. He is still happy, not throwing up, and hasn't needed a blood transfusion yet. The doctors were surprised that he hasn't needed a transfusion yet. A normal level for the hemoglobin is 10.5-14. Cael is at 8.2. They will do a transfusion if his level goes below 8.0.

I spoke with the doctor about the success rate of the transplant. She said that in the past 10 years, Texas Children's has given 35 SCID patients stem cell transplants. Of those, 85% have survived. In the past 4 years, they have done 8 stem cell transplants using cord blood, and all of those patients have survived. The reason the 15% did not survive was that they had very bad infections going into the transplant, which ultimately lead to their deaths. Cael also has some bad infections, but not as bad as the 15%.

The most concerning part for the doctors is the time after the stem cells engraft, when the infection in his lungs inflames. His lungs will also inflame as an immune response to the infection. They are concerned with all the inflammation that he will not be able to breathe. They are going to give him some steroids to help the engraftment be a little slower than typical, and to help reduce the inflammation in his lungs.

I am sure Cael is going to be just fine and make it through everything like a champ. He is such a little trooper. I am amazed every day that he is as happy as he is. I do believe that the better attitude we have, the better Cael will do. So we will continue to do our best to be upbeat and positive. Honestly, it hasn't been too hard so far. I feel like I am naturally a positive person. I always try to find the best in everything. Even if a lot of things are bad, there is always something that is good. Adam seems to be the same. I haven't really felt like he has been sad or upset either. That's what is awesome about us being in this situation. We seem to be coping with everything pretty well. I know there is a lot to come, and the road will be very tough, but we have such amazing support in our families, that I know we will make it through everything, too.