What were your greatest concerns returning home?
It was kind of scary after the transplant because at the end of it we were still going through, “Are our levels ok?” You don’t know what really to expect. Will I know if he has a fever? Will I know if he’s not feeling well? What if he goes into septic shock? Where do I go? How close am I to the ER facility?
It was all of this… and because gene therapy was one of the newer treatments, they were really watching him. Other kids did fine with the chemotherapy but he didn’t. He had blisters. He couldn’t eat. We lost our feeding during that phase. He needed around the clock all of these regimens to get him to eat. He lost a lot of hair. It definitely affected him a little bit at home.
What resources helped you with information for preparing for home?
We used Heather Smith’s support group, SCID Angels for Life, and they were probably the only reason I was able to get through this thing sanely. Each day I thought, “I don’t know how I’m going to get through the day.” The support groups were really helpful…. A lot of families were 30 and 60 days ahead of me in the gene therapy trial, so I used them as resources.
Also, make sure you stay in touch with your immunologist.
What advice would you give to parents as they ready themselves to return back home with their baby?
The biggest thing is being your child’s advocate and not being afraid of being it. Reach out to your immunologist as soon as possible… It’s being your child’s advocate and really getting involved and I know it’s scary and hard but at least getting in touch with Heather Smith’s SCID Angels puts you in touch with others who have the same kind of SCID.
What else would you like parents to know?
SCID has taught me if something happens, I won’t be able to live with myself, because it’s so real. Even in the hospital, I had a sign that said, “Please check with mom before touching the baby.” They thought I was crazy but he didn’t get sick for the longest time because of it.
My son is 5 years old now and we are dealing with the effects of his disease. We are trying to find balance between protecting him and allowing him to live. This has been difficult and may always be.