At 11:42 a.m. today (Milano time), our baby girl Keira had her re-birthday! A day we never even knew existed prior to the end of June 2020, when we found out her diagnosis after our middle daughter Olivia was also diagnosed with MLD in March.
The entire day was rainy – not a “happy” type of weather for many but for our family from Arizona, where we see 300+ days of sunshine each year, we LOVE the rain! It was perfect.
In the isolation room at the hospital only one of us can be with Keira at a time. But on this special day they allowed Dave to join us so we could both be with her when she gets her renewed stem cells.
It has been 6 days that she and I have been in the hospital while she received meds and underwent chemotherapy before her gene therapy treatment. To say she was excited to see her Dad was an understatement. It was adorable to see, yet also heartbreaking knowing it would be at least 15 more days until she could see him in person again.
While she bounced around on his lap babbling away the nurses began to come in and get things ready. With her central line catheter already in place it didn’t take long. They placed some stickers on her chest to monitor heart rate, attached the IV and before we knew it they said “We started!”
I was looking for a bag of blood similar to what they took out of her during the leukapheresis stage and here was this tiny little bag of clear liquid (see below). In that bag and the other one to follow were hundreds of millions of stem cells ready to go back into her and correct the faulty genes she had prior. Thus creating the ARSA enzyme her body couldn’t previously create and allowing her to live a normal, happy life. It was such a simple procedure to have these go right through her central line, yet an incredible, unbelievable and life-changing moment (which we recorded and will soon share).
It was a moment we also had to share with family. And we did so with a Zoom conference call (of course). Here in Milan, my Mom and Dad (Karen and Michael) tuned in with our other daughters Eva and Olivia, in Indiana my Aunt Deb and Uncle Ron joined in, and in Arizona we welcomed Dave’s Mom Tammy and Step Dad Geoff, Dave’s Dad Dave and Step Mom Jan and the girls’ neurologist who initially diagnosed Olivia, Dr. Vinodh Narayanan (it was 3am in Arizona at the time).
It only took but an hour to complete. We thanked everyone, said our good byes and I love yous and spent some time with Keira before she took a (very brief) nap.
The rest of the day she was SO full of energy…almost acting like it was her birthday and she was excited. 😉 Her 30-minute nap was all she needed and she bounced around and played for the remainder of the day. Until I finally got her to sleep around 8:40 p.m.
As with each of our girls, they are always the happiest babies. She has not been phased one bit by anything she has gone through these past few months. It’s amazing. She is incredibly strong and already so brave. We can’t wait to see where that takes her in the lifetime she now has ahead of her.
It is now 9:45pm on Friday, October 2, 2020 and I am watching the rain fall while Keira is sound asleep. I hope her dreams are as precious as the future we dream of for her every day. Happy Re-Birthday sweet girl! We love you SO much! ❤❤❤❤❤