As a bit of a back story, our daughter Samantha had been having some leg pain and went in to the doctor multiple times to figure out why. One doctor finally did a scan and realized she had tumors at the base of her brain and on her spine, and said it was amazing that she could even walk based on her tumors size and location. He referred her to Abbott Northwestern Hospital. Samantha went in on March 19th to have pre-op surgery to cut off the blood supply to the two tumors they thought needed attention right away. As they were exiting, the vessel ruptured causing blood and spinal fluid to build up. Having nowhere else to go, the spinal fluid and blood created pressure on her brain and caused spinal cord damage.
She was rushed back into surgery to have a tube inserted to drain the fluid from her brain. Because of all that has happened, the spinal cord damage is permanent and she is paralyzed from the chest down. There are many other hurdles that come with spinal cord damage that we’re learning how to deal with.
Sam was able to have the tube removed a few days ago and is doing well with that part. She has been in the ICU since the 19th and just got the okay to move to the next step which is a regular room. When she’s stable enough she’ll be going to Courage Kenny. They specialize in severe spinal cord injury and have the best doctors and physical therapists around. Courage Kenny is attached to Abbott so the doctors she’s had will still be involved.
As we work up to heading over to Courage Kenny, Samantha also has another diagnosis to deal with. She has been diagnosed with Von Hippel-Lindau disease (VHL-
https://en.wikipedia.org/wiki/Von_Hippel%E2%80%93Lindau_disease) which is what caused all of these tumors to grow. “VHL is characterized by visceral cysts and benign tumors (
https://en.wikipedia.org/wiki/Benign_tumors) with potential for subsequent malignant transformation.” This means Samantha will continually have tumors growing in her body and will have to work closely with doctors to manage this disease.
She is so young, and this whole diagnosis is so difficult for all of us. I will try to update here so everyone can hear how things are going with Sam’s recovery and journey from here on out.
If you'd like to send Samantha a card, you can send them to our house and I will make sure she gets them. If you'd like to visit, please let me (Wendy) or Taylor know and we'll figure out a good time.
