Day +29: We got Kiira’s engraftment numbers today: 100% cd3 and 99% cd33, which means she almost completely has Miia’s immune system! Yay!! Numbers may still fluctuate but this is great for now.
We are still treating CMV and I’m currently doing the IV meds at home. Unfortunately it’s like chemo, so it will keep Kiira’s immune system lower for the 6-8 week treatment (have to be even more careful with exposure) and I have to be very careful with handling, like wear gloves to change diapers and throw meds in a special container.
CMV can also lower the immune system and the virus and/or treatment can cause graft failure. Since Kiira’s WBC count dropped more today, the doctors are really weighing options about whether or not to send Kiira inpatient for a different treatment that’s easier on the immune system, harder on the kidneys, but a stronger drug to combat CMV.
CMV is treatable but I am nervous about it affecting engraftment. The doctor and I discussed the balance of waiting too long to treat it more aggressively to save engraftment versus just waiting and seeing what her body does on her own with the current IV meds. They are looking closely at her counts and checking CMV levels every couple of days and hopefully we’ll make the best educated decision.
Today we had an IVIG infusion, putting us in the clinic for over 4 hours. Tomorrow we have another appointment and possibly a dose of GCSF to stimulate Kiira’s immune system.
I’m confident in the team here and they celebrated Kiira’s engraftment numbers as much as I did, so she is in good hands. Thank you for your prayers!
Follow on Facebook
- $8,831 / $20,000
EB Kids to follow: