Madi Update: The Game Changer

So our former game plan is on hold.  Radiation, chemo, keto diet... they will all be waiting.  Madi will be receiving a second surgery this Wednesday.

Last week, as we were making preparations for radiation, I had this nagging feeling to push getting a spinal MRI done.  The doctors did not expect there to be any kind of cancer there; it was a slim chance, but they said we should do it at some point.  I kept feeling this push.  With a heavy heart, I asked the doctors if we could do one as soon as possible.  They agreed that it would be better to have one before radiation began, just in case.  They also wanted to do a PET scan to use as a baseline before her treatment. A few hours before they were going to do the MRI, the radiation oncologist resident called to say they had decided to add in another full brain MRI since we were already getting a spinal one.  They thought it might be helpful for radiation, to help them be more precise in the treatment area.  This brain MRI would be much more detailed than the others they'd done in the past. She was in procedures from 12:30-7pm that day (a week ago Friday), and Kurt requested a copy of all the scans on a CD before leaving the hospital.

First, there is no sign of cancer in her spine. Small victory.

Second, that same afternoon while Madi was in procedures, our world-class neuro-radiologist friend emailed Kurt saying he had been out of town since before we discovered the cancer, but was back and wondered if we wanted to review the images with him, just so that we could better understand what was happening. He spent two hours at our house on a Saturday morning helping us understand all the images.  After he left our house, he reviewed the images with a friend, a world-class neurosurgeon.  A couple days later, this neurosurgeon called and said he felt confident that he could put together a pediatric team of neuro all-stars at Massachussets General Hospital (MGH) who could remove the remaining visible tumor.  With GBM, having a "gross total resection" (or complete removal) of the visible tumor on the MRI gives you the best shot in the long term.  Our current neuro team told us immediately after the first surgery that they removed only about 70%, because they were concerned about serious collateral damage if they operated on the other 30%, and that a second surgery was unlikely. So we talked to them earlier this week and shared the MGH opinion with them. They said the clarity of the more detailed imaging (which they didn't have at the time of the surgery because it was so urgent to operate) was quite impressive, and it would in fact be possible to remove all the visible tumor. But they still felt it wasn't worth the risk of collateral damage, and were still suspicious that the tumor has already spread to areas that are untouchable. But the MGH team is confident that they can do it while minimizing collateral damage, and recommend a second surgery to attempt to remove everything as the best course of action to maximize Madi's chances. She would still need radiation and chemo / immunotherapy after the surgery.

Despite the hope that surgery offers,  it also  poses substantial risks.  Part of the tumor is in her motor cortex, which controls movement.  The MGH team made it clear that there was a chance she could have significant short-term motor problems on the right side, but they thought these would resolve over time with some rehabilitation. A second surgery so soon after the first also carries a heightened risk of infection. It also "resets the clock" on radiation, so she'll have to wait another 3-4 weeks to start that, and microscopic / non-visible tumor that could have been treated with radation now might continue to grow during that time.  She also would need to amp up medications which are currently giving her a whole host of negative side effects (i.e., sleeplessness, moodiness, anxiety, increased appetite and weight gain, puffy face, etc...).

Kurt and I felt pulled in two directions, unsure of which option would be best for Madi in the long-term.  When Madi heard me say, "I just don't know how we will make this decision," She said matter-of-factly, "well, just pray about it."  She time and time again reminds me of how pure faith yields great results.  When fear gets in the way, that's when things get all confused and messy.

And she was right.  We headed to the temple with the question hanging in our heads. As our time there came to a close, both Kurt and I knew with certainty that surgery was the right option. We sat marveling at the clarity and peace we felt.

So at 6am on Wednesday morning, we will check in for her 7:45am surgery.  The operation will take several hours, and they will be using a variety of new tools to do it.  One of the tools is an iMRI machine, which allows the surgeons to do multiple MRIs during the course of the surgery so they can continually see how much tumor remains.  They will also use a machine that periodically tests her motor control on the right side to know if they are getting too close to damaging tissue.

Kurt and I will be fasting that day and we are asking anyone and everyone - both friends of our faith and those who are not- to fast with us.  While I believe that there is a master plan for each of us on earth, I also believe the details are governed by faith.

If you have never fasted before, it is a wonderful and miserable experience :).  But there is something other-worldly about putting your spiritual needs ahead of your physical appetites.  Plus, there are documented health benefits.  I have read that dry fasting (going without food and water) for 24 hours is the equivalent of 2-4 days of water fasting.  At times (like during pregnancy) when I'm unable to give up food and water for so long, I give up other things... like sugar or anger or something else that I partake in frequently enough to remind me of why I'm giving it up. :)

Thank you to all of you for being concerned for our sweet Madi and loving her - and us - enough to make little sacrifices on our behalf.  We sorely need your faith and prayers right now!

We will keep you posted on any new developments.


Dona Griffin said…
Gene & I just read this to Clint. We will be fasting with you Wednesday. Yestetday Gene & I were at the temple for our 45th wedding anniversay & put your names on the prayer roll. We love you.
Ms. Mason said…
Please send Madi my hugs and all my love. Know that we are all praying non-stop for your sweet and wonderful daughter., for you and for her medical team. May your faith sustain you and strengthen you.

Lois Mason
Becca Pizzi said…
My first fast ever will be this Wednesday XO. #TeamMadi
Anonymous said…
I found it profound that the only people in the temple Saturday were our family and yours. It felt more intimate and sacred. You and Kurt were remarkably calm and composed on the outside. Thank you for your example and your faith. At least partially since you described fasting as 'miserable' I will join you tomorrow. I am a terrible faster and I gave it up a long time ago because I made everyone around me miserable too.
Anonymous said…
My Counseling Cohort has been praying for you all since the first day when Aunt Shari passed this news on to my mom, and we will keep praying for your entire family. I'm so sorry you are going through such a frightening time and thankful you are blessed to be surrounded by such skilled doctors. I pray you continue to find peace in this storm. ~~Your cousin Angela in Colorado Springs
The Coelhos said…
We will be keeping all of you in our prayers tomorrow and in the coming weeks. You are in the best possible hands and your strong faith is inspirational. XOXO, The Coelhos
Clare said…
Jenn, we are all thinking of you, Madi, and your family, especially tomorrow. With love, Clare
Mary Staples said…
I will be fasting in my own (nursing) way! Love you all Knight family.
Our family will be praying for Madi- for her safety and continued faith; for the medical team- that He will guide their hands during the surger; and for your family- that He will continue to grant you the peace that surpasses understanding.

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