Madi update: Done with radiation and looking to immunotherapy

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Madi finished her 6 weeks of radiation treatment on July 20th, and it was such a surreal experience for both of us.  Kurt had already taken the rest of the kids to the annual Rockwood family cousins' camp at Grandma's house while Madi and I stayed behind for a few days to finish up her treatment. Those last few treatment days were kind of lonely.  On her last day, we had the 7am radiation slot before our flight out that morning.  One of the nurses took this video and it makes me cry every time I watch it.  Why am I the only one crying here??? This is a pretty accurate reflection of the last three months. Madi is cool as a cucumber and I'm a hot mess. :) She brought her "completion of treatment" certificate to cousins' camp with her and you would have thought she ran a marathon.  She hung it on the wall and was very proud.  In my book, what she did was a lot harder than running a marathon and I think she deserves every bit of pride she feels about completing this hard thing!  I love being done with our daily trek to MGH, but I miss our dedicated one-on-one time together. Finishing radiation takes us one step closer to the waiting and the unknown and that has always been a hard place for me to live. I guess I'm going to have to get better at living in that space because it could literally last for the rest of our lives.

Madi also ended the keto diet after finishing radiation.  She had agreed to six weeks of it, but was very ready to stop.  While she did lose almost half her hair, she managed to avoid most side effects (no nausea, headaches, or fatigue) while she was going through radiation.  She attributed this to the keto diet since after she ended it, some of the side effects have surfaced.  We are not really sure if that's just because the effects are starting to kick in or if it's because she's not eating keto anymore.  She has mentioned a couple times that she may want to go back on the diet to see if she feels better, but it is a very difficult diet and we are not sure how it can be sustainable long-term (at least not at the level the research suggests may be helpful for tumor shrinkage). So, the jury's out.  I finally managed to score a meeting with the epilepsy dietician at MGH.  Since medication-resistent epileptic children have been using the keto diet for over sixty years to control seizures, I'm desperately hoping they can give me some good tips and resources.  Regardless, Madi is still doing remarkably well and the bad side effects are very fleeting- nothing like they were before she was diagnosed.

The exciting and terrifying next part of her treatment journey is immunotherapy.  A few days after Madi's second surgery, when we were reeling from the news that her tumor would be resistent to traditional chemo treatment, the FDA issued a historic approval for an immunotherapy drug called Keytruda.  This is the first time the FDA has ever approved a cancer drug based on a specific genetic profile, rather than on the location of the tumor in the body (colon, lungs, brain, etc). And luckily for Madi, she has the exact genetic profile for which the drug was approved. The drug is already frequently used for Stage 4 Melanoma and Colon Cancer, but without this recent approval, our insurance likely would not have covered it for brain cancer (it costs $150,000 per year). They have agreed to cover it now.

From what I understand, some cancers are able to "hide" from the immune system so they can grow uninhibited. The immunotherapy drugs essentially expose the true face of the cancer to the immune system and then the immune system attacks the cancer directly.   It's amazing, really, and there is a lot of excitement right now about the potential of immunotherapy for many different cancers.

The one caveat to this panacea is the brain.  The brain's immune system is different than in the rest of the body.  Because the blood-brain barrier offers a first layer of defense, there tend to be fewer immune system "soldier" cells in the brain, versus other parts of the body, with which to mount an attack against invaders. Therefore the success with immunotherapy for brain cancer has been muted compared to other organs. We have only read about four other pediatric glioblastoma patients who have used this medicine.  Two of them had really great results and the other two died. So Madi is a pioneer with this.

Our oncologist has reached out to top doctors in the US and Canada who have had experience with the drug in glioblastoma (either pediatric or adult) and is collecting best practices.  One of the major side effects of using the medication is brain swelling in response to the inflammation caused when the immune system is revved up to attack the cancer. Brain swelling can be problematic for many reasons, not the least of which is that it causes nausea/vomiting, and intense headaches (the very things that alerted us to the cancer to begin with).  These types of drugs can also sometimes cause brain hemorrhaging. But if it works, it could really work.

Another challenge is that the medications typically used to treat swelling in the brain also suppress the immune system so the whole process is like a tug of war. You basically have to let the swelling go as long as the patient can possibly stand it before you intervene, to maximize the effectiveness of the drug. Our oncologist, though, is consider adding another drug called Avastin to counteract the swelling.  It may end up suppressing the immune cells too much, but he thinks it will be better overall for Madi (and have fewer side effects) than using steroids which typically are used to treat swelling in the brain.

This week,  she will have her first MRI since the last surgery, to check for any cancer recurrence, and probably start this new therapy that same day.  For the next 6-9 months (and possibly longer), she'll need to go to MGH once every three weeks, for 4-5 hours each time, to get an infusion of immunotherapy +/- Avastin. She is not looking forward to it and neither are we; however,  we feel pretty strongly that it is important to take this route.  We are praying for miracles to happen here.

We continue to feel the strength of your prayers and fasting.  Thank you again for all the uplifting notes, comments, letters, packages, and gifts!  I am (*very slowly) trying to get caught up on thank yous.  If you haven't heard from me and are wondering if we got whatever you sent, we likely did get it!  I'm just really struggling to respond to everything in real-time. We are so grateful for all of the love and support we have received over the last four months.