The day finally arrived! On Friday, September 4th we took the first step in Keira’s gene therapy treatment!
After being admitted to the pediatric floor of the hospital they put in an IV (which needed to be taken out and redone the day after), took blood samples (which they do daily) and every 12 hours inject a medication that will prompt her stem cells to be released from the bone marrow and into the bloodstream.
On Monday morning, she will have surgery to place a central venous catheter followed by the leukapheresis procedure for collection of stem cells.
So far, she’s been handling the hospital stay great and gets over any pokes fairly quickly. The only thing that really holds her back is the IV on her foot and the bandage protecting it.
That aside, she’s having no trouble keeping me up at night.
One thing I came prepared for (for her anyway) was bringing food from home (bananas, avocados and berries). I’d heard stories from other gene therapy families about the difficulty of them understanding that a baby this age eats normal foods (in addition to formula) and not pureed or processed foods. I’ve also heard the food at the hospital is just plain bad. They were right.
I’ve told them multiple times about her diet and they still bring the pureed, processed and soupy foods. For me, here’s an example…
Food aside, the rest of our stay so far has gone well and the staff is amazing.
To say we are excited about this treatment and the life it will allow for Keira (and all of us) is an understatement.
What’s next? After this, we go home – to our new apartment instead of the hotel we were staying at – for a few weeks before Keira is admitted to the hospital for 40-60 days for the remainder of the treatment. That will include chemotherapy, the gene therapy itself (administration of corrected cells), followed by ongoing bloodwork, scans and other tests to ensure her body is safely accepting treatments and all levels are returning to normal.
Thank you everyone for the outpouring of love and support throughout this process. It means the world and we will continue to keep you updated on our journey! ❤