Game plan: temple and keto

We have not received any additional information about Madi's tumor, nor have we scheduled any additional major therapy yet.  I'm not quite sure how often to update the blog.  I'm sure that our updates from here on out will be relatively small.  We will really not have any solid information certainly until after all therapy has been completed and we receive results from final PETscans and MRIs.

But I still sometimes feel the nudge to post on here.  I hope you will forgive my philosophical meanderings or reports on my other children.  I find that the writing seems to be therapeutic right now.  I will try to add a "Update on Madi" in the title for those who would rather be here on business only. :)

We are in a stable place right now, but it has come after an arduous road.  Ultimately, the peace that we feel has come almost exclusively from our beliefs: the prayers and fasting from others (and from ourselves) our personal scripture study, and going to the temple.  I now think of the temple as a gas station.  I can tell when I'm running low and need to refill.  That is the first thing we plan into our schedules now: how and when can we get to the temple this week? Thank goodness we have that space where we feel so connected to all of our family and friends who have passed on and with our Heavenly Father, who loves us even more than we love Madi.  Sometimes when I walk in, I feel so surrounded by love and joy, I almost forget how much time I've spent being miserable over the last few weeks.  It is these moments of joy that help me realize what a party it will be when it is time to leave earth.  :)

Like I said, though, this journey has been arduous.  In the beginning,  we tried to find hope from the medical world.  There really is none to be found, even when there is because every case is different. Regardless, Kurt inhaled any information he could get on glioblastoma: clinical studies, case reports, medical journals, etc... recruiting the assistance from doctors to interpret what he couldn't immediately understand. While I normally love research, this was too emotionally charged for me.  I could not even stand to look at it without crying and had a hard time listening to Kurt tell me about it.  I have been deeply grateful for his fortitude in doing it, though, because the doctors have given more specific explanations and more detailed descriptions of treatmentys going forward because he was so knowledgeable. Our doctor friends who are specialists in neuro-radiology and neurosurgery deserve special blessings for the time they have spent helping us understand what we have read and even sitting down with us to look through Madi's MRIs and PETscan.  Poor doctors are never off the clock.

After Madi was released from the ICU, during one of our discussions with the neurosurgical team, I asked if there were any dietary therapies that were being used in conjunction with standard therapies. One of the surgeons referenced a clinical trial being conducted on the ketogenic diet (KD). Since cancer treatment has been an academic interest of mine for a few years (another topic for another blog post), I was very familiar with the diet and had even tried it myself last year.  I dove into research relating KD with brain cancer (often gliomas, specifically).  While evidence is still inconclusive (there are several clinical trials happening right now -that is just one) evidence from animal studies, case-based studies, and metabolic-theory research show promising signs of KD- at minimum- increasing the efficacy of therapies like radiation and chemotherapy. Here's  a description of just one of the studies.

So I have spent the better part of this last week clobbering together a menu of KD recipes, reading discussion boards, talking with Madi about her comfort level at trying this diet (she is very willing), and trying to figure out fat to protein/carb ratios.  We are going to start in a couple of days and will continue as long as Madi feels comfortable continuing.  I will not push her to do it if it is making her miserable.  Goodness knows she is already going through more than she should have to right now. But based on my own experience with the diet, I think we can make it work for her.

So that's our game plan right now: temple and keto diet.

We are also starting to peek our head out of our rabbit hole and actually talk to people again. :) It is nice to feel like we are finding a new normal and can function again. Our other kids seem to be doing well (though more behavior issues than before).  I take that as a good sign that they are processing things in their own way, and am grateful for it (though simultaneously frustrated by it :)). As Madi's treatment progresses, we may start attending the sibling group at Dana Farber for siblings of cancer patients. We will see how things go.

More later.

Comments

Becca Pizzi said…
Love you very much!
Debbie Gardner said…
I love your "philosophical meanderings!" I cry through them as they strengthen my faith. Know that the Batesville Gardners are crying and praying with you. Love you! Debbie
Sylvia Romm said…
If you do end up going with the ketogenic diet, there's a whole group at the MGH Pediatric Epilepsy Program that knows how to keep kids happier on KD. I'd definitely reach out to them for tips and tricks. They also have great events like KD friendly Halloween, etc. to help kids get through some of the tougher holidays for those who don't take in any glucose. Maybe they have the same groups at CHB?

http://www.massgeneral.org/children/services/treatmentprograms.aspx?id=1638
Cami said…
I check your blog every day to get an update on what's happening so keep posting away! My favorite part of this post is the party when we all get to heaven. I couldn't agree more! Love you guys so much! We are thinking and praying for your whole family every day.
ellen said…
It was so good to talk with you briefly on Sunday. heart ep
Andrea J said…
"Today you are you. You are truer than true." Your thoughts reminded me of so many conversations we had while running. I'm so lucky to know you. You've always been wonderful.

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