* Warning. Photos in this post are not for the faint of heart*
"You're just going to have to have faith." Uncommon words coming from a doctor, but that was precisely what our pediatric radiologist said to me. We are currently taking a pretty aggressive stance against Maaike's cysts in hopes that we are creating a future for her that is filled with words and food. We decided to move away from the advice of our local doctor and follow the path that the doctors at Children's Hospital in Boston. Thus far Maaike has undergone two rounds of sclerotherapy, with 10 to 15 more treatments to go.
The actual procedure is done under general anesthesia with the injections guided by ultrasound. First a needle is used to extract fluid from the cyst followed by a second needle that replaces an equal amount of fluid with the chemo drugs.
The big question: Is it working? The Answer: I don't know.
Immediately following the procedure there is no visible difference. By the next morning swelling sets in as a natural response to the needles themselves. Next is bruising and hardening of the cysts which can taken weeks or even months to dissipate. And finally the ultimate collapse of the cyst. This far we haven't made it to collapse and so we are striving to keep the "faith" as we push on through more therapies.
This photo was taken in the ER on day 3 post her first injections. She received 8 injections of Bleomycin in her tongue as well as the sclero treatment of 6 surface cysts in her neck. We had been discharged the night before from the hospital and woke up the next morning to this. Over night swelling caused her tongue to split on the right side. We were readmitted to the PICU and then discharged again two days later.
Here is Maaike another week later. She is such a trooper! No feeding tubes. She went to a Pediasure liquid diet for three weeks until the swelling went down and we slowly introduced soft foods. It took about 6 weeks to get her tongue back to it's normal large size...or maybe slightly smaller.
So why would we ever put Maaike or ourselves through all this? The answer: Hope. Hope that this will provide her with the best chance at the best life that she could possibly have. Hope for a life full of words and food. Hope for a life without a trach. Hope that one day she will join Trevor Cunningham as one of the kids who made it through the battle with many tales to tell.