I just spoke to Heather It was a rather quick phone call and I just typed while she was talking so if this update sounds fragmented, I apologize. I’m doing the best I can.
They saw the nuero-oncologist Dr. Uhn. He spent over an hour and a half with them. He didn’t have a lot more answers, but he did take a lot of time with them and heather says she feels much better there than anywhere else.
The tumor is NOT on her motor strip. It is on the front end of her brain… think of the motor strip as the factory. Its just the workers. The tumor is in the executive portion of her brain. It’s is involved in the place that tells her body what to do. Its better being there than the motor strip.
Life expectancy is the same- 15-20 years. From now? We don’t know. But he reiterated that it is just based on an average. She is a 32 year old women in wonderful health. Which gives her the best possible prognosis even without surgery- just in quality not quantity.
He said that the surgery would cause deficits. 15-20% chance of paralysis of right side to just loss of motor skills on that side. They meet with the neurosurgeon next. Heather asked Dr Uhn about surgery and he said that if the neurosurgeon said 15% or less chance of problems from the surgery, she should do it. But more than that she should do radiation and live the rest of her live with the quality that she has now.
Please pray for them to make these hard decisions. Nothing needs to be decided today. She said that she would much rather live a shortened life and be able to play with her children, than not be able to pick them up and hold them.
-Laura
Laura – thanks for the update. I’ve held off calling at all and will wait and pray. She is heavily on my mind today.
Hope you and the 95 kids are doing well!!
(uh oh- I may starting a rumor here)
Unbelievable. That anyone would have to make these kinds of decisions. Take heart, Heather (and Family), as I know you do…the Lord has already planned it all! I am praying for you.
Thanks, Laura. Still praying, Heather. ((Hugs)) to you both!
Thanks for the update, Laura – keep us posted.
Praying….
Thanks, Laura! I’d been wondering how it was going.
Remaining in prayer.
This may sound weird, but I am so grateful for you sharing this journey with us.
May His grace continue to be sufficent.
Huge {{{{{{Hugs}}}} to you Heather, you dear husband and those sweet children.
Thanks for the update Laura – Still praying
thanks.
still praying…
Thank you Laura…
My prayers seem like they won’t be enough, but I’m still with you Heather…
xo
Thanks for keeping up posted!
Wow…no one should ever have to state, “I would much rather live a shortened life and be able to play with my children, than not be able to pick them up and hold them.” My prayer is that you are able to pick up your grandchildren and hold them. Hugs and prayers.
On the up side, a lot can change in 15 to 20 years as far as treatment goes! I think this doctor is really giving good advice. Keeping my fingers crossed for Heather!
Thank you for the update. I have been thinking of them all day
The Lord has upholded you, He upholds you today, and He will uphold you tomorrow.
Heather, I am praying for direction for you and your family. May He make your decision so CLEAR to you!
Chris from Canada
Still praying. Been thinking of them all day.At supper tonight, my mother said… I wonder how Heather is doing. Everyone knew who she was talking about.
Thanks for the update, Laura. Heather I pray you hear His voice leading you. I know you will.
thank you for the update!! God bless this family as they seek His will in making these hard decisions!!
Sallie
In much prayer for you. I could not even imagine making the choices you have ahead of you.
Thanks for the update Laura. It is so much to process. We’re praying for wisdom for them.
It’s comforting that she’s there where she’s getting the very best information. Hard, hard decisions. Continuing to pray.
Hope things go okay. As a caution, frontal lobe injuries and surgeries sometimes result in drastic personality changes- but I’m sure Mayo has informed you of all the frontal lobe intricacies. Keep us updated!
Heather,
I am not an expert on the issue, but I left a comment for you a few weeks ago regarding my best friend and father who have both had brain tumors, both malignant.
Have you asked about or been told about the intraoperative MRI that is offered at several hospitals around the country? I was involved in an organization called Refuse to Lose – http://www.refusetolose.org/ – in college. Their goal was to raise money for an intraoperative MRI at Cook Children’s in Fort Worth. I love love love this family and they have quite an amazing story if you have time to read a bit about them… Anyways, from the best of my understanding the intraoperative MRI allows the neurosurgeon to use the technology of the MRI during surgery. It is supposed to serve as a guide to prevent them from causing unnecessary damage to the brain during surgery. From what I understand it is very successful in reducing post surgical side effects, like the paralysis you were talking about. Again, I’m not an expert, but that is my understanding of how it works.
My best friend’s story is very similar to yours. Her tumor was in the same location, although she had obvious symptoms (favoring her left side significantly, mood changes, and sleeping 16 hours a day) that caused them to find it when it was quite small. They were able to remove it successfully and she has been cancer free for 3 years… wow, it seems like just yesterday… but 3 years!! The only side effects that she still suffers from are a little weakness on the left side of her body and very very minor vision issues. The weakness on the left side of her body does not effect her day to day life in any way and could most likely be resolved with a commitment to physical therapy (but she is stubborn.. ha ha).
I don’t know you, but I think of you and pray for you every day. Brain cancer is something that has certainly effected my life tremendously and I feel an immediate connection to others traveling this journey. My thoughts and prayers are with you!
Kimba
Thanks for the update.
Will keep praying.
I got home from a trip the other day and a friend asked me if I knew “how Heather was doing”. Everyone here is keeping tabs on how things are going and we’re praying too!
Dear Heather,
Well here it goes, you know out of your sisters I am the worst at blogging!! (if that is even a word)LOL. I just wanted you to know that I love you dearly and I just wanted to give you a BIG HUG right now. If there is anything I can do for you, just give me a call. I miss chatting with you.
Love, Cindy
Friendship is precious, not only in the shade, but in the sunshine of life.
~~~~Thomas Jefferson~~~~
“She is a 32 year old women in wonderful health. Which gives her the best possible prognosis even without surgery- just in quality not quantity.”
She is a woman of God – faithful and dedicated! That gives her the best possible Prognosis!!
Elena makes a good point. Technology is changing so rapidly, if a new tumor grows, they may have invented an even better way to treat it. My mother had a brain tumor 12 years ago and the technology used for her surgery now sounds almost 17th century in comparison to what is available today. If we can just pray Heather through this one, who knows what God has in store for her future!
Thanks Laura. You’re a great friend. *HUGS* to Heather. I’m praying for her whole family and that God will lead her to make the right choices.