Update on DOP for July 18, 2014
Well….it has been six months since DOP’s brain tumor surgery and five months since I have last posted about her. So many people prayed for her and for our family and we still frequently run in to old friends who ask how she is doing, so we figured it was time to update everyone.
Physical Therapy
DOP (Daughter of Purpose for those of you with short memories) is no longer doing any kind of physical or occupational therapy. She finished them a couple months ago and according to the doctors and physical therapists, she is within 95% to 100% of where she was before the surgery. We think she is also, except for the fact that she still walks slower and is a little more unstable than she was prior to surgery. But she will continue to get stronger just by living life and should eventually gain more stability.
On a side note, her doctors at Shriner’s hospital have changed her leg braces recently and that seems to help. In September, she is going back to Shriner’s again for a Gate Study…a real-time digital recreation of her actual and true gate…it’s the coolest technology ever! I’ll be sure to take and post lots of pictures.
Picking out new braces styles.
Vision
A vast majority of the time, DOP no longer sees double-vision. If she is tired or straining to look in an odd direction, she gets double-vision…but don’t we all??
For the most part, her vision has cleared up substantially and this doesn’t ever seem to bother her anymore.
Kayaking with brother at Adaptive Sports.
Bowling with Adaptive Sports.
MRI
Three months ago, DOP had an MRI done and the doctor just said that it was “stable.”
Stable?!
What exactly does that mean? Well, it means nothing changed from the scan that was done right before she left the hospital three months prior. No change is okay…since it means the 1% of the residual tumor is not growing. As long as it doesn’t grow….we’ll leave it right there and not touch it.
“Hi, this is my daughter. She has 1% of a 3” tumor stuck in the middle of her brain.” It’s just weird.
Jump three months later…
We took her in for a six-month follow-up MRI today and had great results after a bit of a struggle to get into the MRI…
DOP does awesome in the MRI! She has never complained about the loud noises, cold room or claustrophobic environment. It’s pretty dang awesome for a 10 year old to lay still for 45 minutes, not moving with nothing to look at.
But that needle before the MRI………….
To do the particular MRI that she needs, they scan the brain using a chemical called contrast that helps the tumors and other parts “light up” in the scan. To put in the contrast, the nurses have to put in an IV needle. This, is where the awesomeness breaks down.
It. Freaks. Her. Out.
I’m not sure where this came from…perhaps it is because most of the eight IV lines she had while in the hospital were put in while she was asleep. She never had to endure really feeling them being put in. To make matters worse, she has thick skin (in a variety of ways!) and several nurses during all our experiences have had trouble getting the needles just right with DOP.
Three months ago, at the MRI, the nurse had to stick her three times. Today….six. The MRI technician tried one time and failed. She got another nurse who tried two more times in different locations. Fail. Fail. She got a third nurse who tried another location. Fail. In came an anesthesiologist. Seeing that DOP was not doing well emotionally by this point, she gave us a few options, but those all involved coming back another day. So I asked for her to try it herself. Fail.
Then…finally, she stuck it. Whoo!
DOP was happy again. Off to lay still in the cold dark MRI room…
I must give a world of thanks to our long-time friend Becca who works at the hospital and came up from the Child-Life Department and sat with DOP during the entire episode. She was a great help and comfort to DOP. You’re awesome!
After the MRI, we sat with the surgeon to get the results. This is what it looked like.
The right side is three months ago. The left side is today. Amazing!
The photo on the right is three months ago. The photo on the left is today.
Inside the red circle on the right is two white spots on either side of the black ventricle. That is the residual tumor the surgeon left inside. The reason was because if she kept scraping that area, it would have done permanent damage.
The left circle has no white spots! Yeah!
The doctor was clear to say that this doesn’t necessarily mean the tumor is completely gone. There is the chance some is still there, hiding and maybe not picked up by this scan. As was always planned, DOP will still get a full MRI every 3 months for at least a year more.
However, this is looking REALLY GOOD!!
We are very excited and Praising The Lord!
MRI done, let’s eat and praise the Lord!
Thank you everybody for your prayers and continued support for Daughter of Purpose. We’ll be sure to update you again if anything changes.
Blessings to all of you who have cared so much for our family.
Nathan and Brandy