Madi update: MRI report and invitation to pray
From Kurt:
Madi had her routine 6-week MRI today, and while we don't have all the information yet, I did want to share a very brief update. I so wish I had better news to share. Unfortunately her cancer has started growing aggressively in multiple places throughout her brain. The last 3 MRIs gave us some hope that maybe the small tumors that appeared had already been treated by radiation, or were responding positively to the immunotherapy. We do think we got some short-term benefit from the immunotherapy, but unfortunately it appears the cancer has now outsmarted it. Glioblastoma has been called "The emperor of all cancers" for a reason. It is incredibly sophisticated and if you block it using one mechanism, it will find 10 other mechanisms to continue its growth.
Her neuro oncologist is reaching out to some of the other top cancer centers over the next few days to see if there are any clinical trials anywhere that Madi would be eligible for. We'll find out next week if there are any other options we can explore.
In the meantime, Madi feels pretty good physically, and she's ecstatic to be leaving on Monday morning for her Grandma's house in Indiana, where we'll spend two weeks celebrating Christmas with Jenn's side of the family.
We could really use prayers right now. Given how quickly the cancer is spreading, the doctors tell us it could start to impact her daily functioning. We are praying for Madi's health to be upheld through the holidays so she can just enjoy the time she has with family.
Thank you again for all of your love and support.
Madi had her routine 6-week MRI today, and while we don't have all the information yet, I did want to share a very brief update. I so wish I had better news to share. Unfortunately her cancer has started growing aggressively in multiple places throughout her brain. The last 3 MRIs gave us some hope that maybe the small tumors that appeared had already been treated by radiation, or were responding positively to the immunotherapy. We do think we got some short-term benefit from the immunotherapy, but unfortunately it appears the cancer has now outsmarted it. Glioblastoma has been called "The emperor of all cancers" for a reason. It is incredibly sophisticated and if you block it using one mechanism, it will find 10 other mechanisms to continue its growth.
Her neuro oncologist is reaching out to some of the other top cancer centers over the next few days to see if there are any clinical trials anywhere that Madi would be eligible for. We'll find out next week if there are any other options we can explore.
In the meantime, Madi feels pretty good physically, and she's ecstatic to be leaving on Monday morning for her Grandma's house in Indiana, where we'll spend two weeks celebrating Christmas with Jenn's side of the family.
We could really use prayers right now. Given how quickly the cancer is spreading, the doctors tell us it could start to impact her daily functioning. We are praying for Madi's health to be upheld through the holidays so she can just enjoy the time she has with family.
Thank you again for all of your love and support.
Comments
You will be with Jolene over Christmas! My love to all of you!
Karen (Edgar) Meeker shared your information with me, as I was looking for information as an "educated parent advocate" for my almost eleven year old daughter who has a brain tumor (Glioma, meningioma, or Astrocytoma/Glioblastoma--unbiopsiable, large, behind right eye on Optic Nerve).
I'm so sorry for the loss of your recent baby. Truly.
I'm also sorry for Madi and her struggles with brain tumors.
Thank you for letting me "peer into your lives" a little and see your great faith, strength, and perspective.
Kurt and Jenn--have you read anything about Avastin (Bevacizumab), DCA, CBD oil, Boswellia Oil,in relation to brain tumors?
Our daughter has been on four months of Chemo (Carboplatin and Vincristine) and her tumor has grown substantially ON Chemo. She has developed a Hypersensitive reaction to Carboplatin and they want to try Avastin and Vincristine (before radiation/biopsy).
We have written to (but not heard back) from a Dr. Mikael Rinne (an LDS Bishop and Neuro-Oncologist at Harvard Medical and Dana Farber Hospital) for a second opinion.
I've read about Immunotherapy, only from your blog. Interesting idea.
May God bless you and your family. You are in my thoughts and prayers.