Full Brain Radiation?!?!
To say we have had a rough few weeks is an understatement!
I spent an hour and a half on the phone with Northwestern in Chicago lining up a consultation with them for a clinical trial they have going on for the RET gene, only to have them call a couple days later and tell us that Mike is not a candidate for their trial.
We did fly to Houston and met with a nice young doctor there who told Mike he would be a candidate for the same clinical trial that they’re doing at Northwestern if he had stable MRI and CT scans. We scheduled those at Mayo the following Monday because they couldn’t get him in there before we were scheduled to leave Houston.
Monday after his CT scan we went to grab some lunch and while we were there had a call from someone from the clinical trial in Houston telling us that Mike was not in fact a candidate because of his two previous Treatments with Retevmo and Gavreto… we really wish someone would have told us that before we spent money on airfare and hotels!
After the MRI we got portal messages that showed growth in some of the lung nodules as well as several new metastasis in the brain which means the treatment plan isn’t working.
Dr. Molina had already canceled last weeks treatment to see if Mike could gain some weight. The side effects (mucositis, lack of appetite, food not sounding or tasting good, dry heaves, etc…) have not diminished, however.
Mike has had a headache radiating from his trap/neck for a long time but he can usually get some relief with different therapies/treatments, but since he got a trigger point injection a few weeks ago at Mayo it has been unrelenting! Mike was in a lot of pain Super Bowl Sunday. Then Monday was even worse, causing eyesight issues and dizziness so we talked with Mayo and they thought we should be seen in the ER, so we packed up some bags and headed north Monday afternoon.
We were already scheduled to have consults with Radiology and Neurology on Tuesday to discuss possible Gamma Knife Surgery on Wednesday. The ER at Mayo was over 100% full with at least 50 people waiting to be seen, so it took awhile but they pushed him ahead a little. After bloodwork (it took four tries to get an IV going!) and a CT scan they determined it was most likely not from cancer and from his neck/trap, so they gave him several different pain relievers which eventually cut the pain to a 5 from over a 10 and sent us to the hotel. We crashed at the hotel and actually slept pretty well.
Yesterday we met with Dr. Yan the radiologist who is on the team that has done Mike’s previous GKS’s. She sadly explained to us that she, her husband the brain surgeon, along with Dr. Molina were not comfortable doing GKS due to the number of Mets involved..
We were beyond devastated to hear that they were recommending whole brain radiation! We had long hard conversations with both Dr. Yan and nurse Kady and decided to come home to talk with our kids and pray about it. We are also reaching out to Dr. Kesari the neurological oncologist in CA that we saw and who did Mike’s spinal tap to see if he agreed or has any other ideas.
Our family has shed a lot of tears lately and I am positive more will come! We will keep praying for a miracle, but when bad news is the only news you hear it gets hard! I am not ready to give up hope, not ready to give up on this love story!!! This season in life is the hardest thing I’ve ever had to walk through! To see your spouse suffering and no answers in sight is absolutely soul crushing!!!
I have seen 10 eagles in the last month… they have been standing in the field next to me when driving or flying right next to our vehicle… my favorite Bible verse is Isaiah 40:31~
“but they who wait for the LORD shall renew their strength; they shall mount up with wings like eagles; they shall run and not grow weary; they shall walk and not faint.”
My word for the year is “Miracles” and I was sent a book called Miracle Moments (Larry and Tiz Huch) and the chapter I just started is called “Operation Eagles Wings”!!! I was also sent a pdf book called “Healing Begins with Sanctification of the Heart” by Eagles Wings Ministry and it has an eagle flying on the cover! What is God trying to tell me!?! I don’t believe in coincidences so I am praying for answers and miracles!!!
A friend also recently sent the song “Answer Me” by Rita Springer and the words are perfect for our situation…
Answer me could you please answer me
There’s 100 things still left undone
Talk to me my fear is sinking deep
My head is telling me You’ve up and gone
You said I don’t have to beg You that I could just come
But I’m standing at the door and it’s like nobody’s home
All I need to know is, all I need to know is are you listening…..
Thanks for listening and for the thoughts and prayers!
❤️ Paula
