FULL MRI RESULTS: New Finding
Jon and I have been trying to process all of the information we learned during Michael’s appointments yesterday.
We got great news…Michael’s tumor bed is stable, no new Ependymoma cancer or spread! That’s a huge praise!
However, we did find out that he has a new meningioma brain tumor that was likely caused by radiation.
We knew 20 years ago, that if Michael survived this long we would begin to see the lasting effects of his terrible, but life saving treatment.
And here we are.
Michael’s Meningioma is not considered a cancer. Our neuro oncology NP called it a “brain wart” and said it is like a callous or mole. But it can, and has grown. There’s not a lot of margin for things to grow in a brain.
Our team will be watching the spot. If it grows too much they will do surgery to remove it.
Today’s overall news was good. No metastasis or new cancer. BUT we just added another big variable to the complicated mix that is Michael’s health.
We have almost reached the 21 year mark of Michael’s brain tumor marathon. That’s a huge amount of time in the pediatric brain tumor world and we are so very grateful!
Michael is a living miracle. We rejoice in that!
And at the same time we are weary.
Sleep clinic was on Tuesday. Talk of transitioning to the UW, high CO2 levels and trouble breathing highlighted the conversation.
Yesterday was MRI, Oncology and Endocrinology. Talk of new tumors, stable tumor beds and possible treatments for extreme fatigue and adrenal issues ruled the day.
In a few weeks we have a CT scan to check on the lung nodules and pre-op for vocal fold surgery at the UW.
Then, on February 1, the surgery will take place with the hope that it will help Michael protect his airway and improve his voice quality.
A week later we will be back in Seattle to see Pulmonary and will add in a sleep study or two in sleep clinic.
All the while I will daily continue to watch for neuro symptoms that could signal meningioma growth.
Although I feel tired right now, through all of this, I hear a constant whisper in my mind…
God is good all the time. All the time God is good.
God gives me the strength to take each new step, to keep going.
He gives me the courage to make the phone calls and ask the hard questions.
He gives me the peace to comfort and pour into my other kids who so often feel forgotten.
And He reminds me that He is still bigger than cancer and brain tumors!
Feeling better already knowing He’s got this!
