Our new normal.
Steven had an MRI and neurosurgical appointment here in Tampa today, just the yearly scan and clinic visit. Given his absolute lack of symptoms and the slow progression of these tumors, I really was expecting only good news today. But I was also prepared for surprises.
Our new normal.
Dr. L, the amazingly brilliant neurosurgeon who first befriended my sweet son two years ago, graced us with her presence today. She followed a quick neuro-exam with a lengthy discussion of the various organs affected by the disease and the genetics behind the growth of tumors.
And we pretty much understood all of the nitty gritty details.
Our new normal.
The scans, predictably stable, were explained in detail.
And Dr. L shared the actual pictures with us today, which we all know is so important to maintaining my mental health.
Our new normal.
The hole in the back of Steven's brain is the same size that it was in August. It hasn't diminished, and we're told that it probably wont get any smaller.
This is normal.
Our new normal.
Dr. V really offered little new information. He reminded Steven that the remaining seven tumors will take a path of their own, as we all understand. No one can predict if they will remain very slow growing, almost to the point of being dormant, or take the bolder, more active stance of creating edema and resulting cysts.
And he reiterated that the hole in the back of my sweet boy's brain will not diminish.
Ever.
That sort of news, showing the enormity of what this disease can do, breaks my heart and scares my soul a little bit, even in the face of stable scans.
Our new normal.
Steven had an MRI and neurosurgical appointment here in Tampa today, just the yearly scan and clinic visit. Given his absolute lack of symptoms and the slow progression of these tumors, I really was expecting only good news today. But I was also prepared for surprises.
Our new normal.
Dr. L, the amazingly brilliant neurosurgeon who first befriended my sweet son two years ago, graced us with her presence today. She followed a quick neuro-exam with a lengthy discussion of the various organs affected by the disease and the genetics behind the growth of tumors.
And we pretty much understood all of the nitty gritty details.
Our new normal.
The scans, predictably stable, were explained in detail.
And Dr. L shared the actual pictures with us today, which we all know is so important to maintaining my mental health.
Our new normal.
The hole in the back of Steven's brain is the same size that it was in August. It hasn't diminished, and we're told that it probably wont get any smaller.
This is normal.
Our new normal.
Dr. V really offered little new information. He reminded Steven that the remaining seven tumors will take a path of their own, as we all understand. No one can predict if they will remain very slow growing, almost to the point of being dormant, or take the bolder, more active stance of creating edema and resulting cysts.
And he reiterated that the hole in the back of my sweet boy's brain will not diminish.
Ever.
That sort of news, showing the enormity of what this disease can do, breaks my heart and scares my soul a little bit, even in the face of stable scans.
Our new normal.
And in a bit of non-VHL but very important news, my bold and feisty little girl had a field trip today to a place called "BizTown." I don't know the exact details of the workings of BizTown, but I do know that it is a local facility that offers real-life work experiences in a variety of settings for children.
My daughter was the boss.
Imagine that.
Our old normal.
4 comments:
Isnt it amazing what normal can be? That is fun about Mary. You need to start just a regular blog for you.
Normal.
I don't know if I should rejoice or sigh. Good news that it is stable, hasn't increased.
I pray for healing with you.
Beverly, you have a wonderful way of writing about the old and new normals of your life.
Marry Christmas to you all.
It is always amazing to me how cancer reorders your universe in ways that you never imagined. I am so glad for the stability, and I am thinking about you today.
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