Day 188, A Rainy Day in NYC

Amber, Caron, and I jumped on a train into NYC this morning, to go visit Memorial Sloan Kettering and make a decision about the trial we are going to pursue.  It was a gray, rainy day, kind of fitting our mood.  It’s funny how Caron and I flip back and forth in our moods – sometimes sad or angry that Amber is in this situation, sometimes inspired by Amber’s determination and the support everyone is giving us, sometimes hopeful that there is a path forward and God is leading us in the right direction.  And that whole emotional roller coaster repeats roughly every 5 minutes of every hour of every day.

Much work has gone into this visit with MSK already, with CCMC working with multiple hospitals to determine what trials Amber is eligible for, ultimately identifying a few at MSK that have the greatest potential.  So today, we met with Dr. Kramer again, and then met with the geneticist.  For now, we are pursuing two paths: genetic testing to determine if there is an underlying “predisposition” (a root cause) to attack, and a trial of a drug named “pembrolizumab“.  While the doctors did a great job of explaining terminology while still going into depth, for sake of this blog post it boils down to this drug helping the immune system get past the defenses of the tumor and attack it.

So, next week (hopefully – schedule TBD) we return to MSK for an MRI, X-ray, and to begin the infusions.  The infusion takes about 30 minutes, and then we return every 3 weeks for another infusion and an MRI on alternating visits, possibly for the next 2 years.

If this drug does not appear to be helping and the tumor continues to grow, our current “fallback” plan is to leave the trial and go in and surgically remove the tumor.  But given the risk of brain surgery, even in Dr. Martin’s skilled hands, we are going to pursue this trial first.

And we will keep investigating other trials, treatments, options, trying to make the best decisions we can as we go.  Please pray that we find the best options and make the best decisions along the way.

13 thoughts on “Day 188, A Rainy Day in NYC

  1. Some much information, so many decisions, Lord guide us on how to move forward and let us rest in your peace as we do.

  2. As always our heartfelt prayers are with Amber and all of you. As thankful as we are for God’s blessings, it can be so hard to accept the “trials” we are all put through. Patience and Faith.

  3. Continuing to have you all in my thoughts and prayers especially Amber. Just know you are all loved and admired. Stay strong Little One!!! I know you will beat this!!! Continue to fight the good fight!!! Never, ever give up!!!

  4. You and Caron will always do right by your kids, we know this. Never stop believing that your not strong enough or brave enough to make these tough decisions. It’s in your DNA…you both are amazing parents! And we, as family, stand behind you 100% of the way!

  5. Matt and Caron, I was just reading up on the medication Pembrolizumab for work. It seems a promising medication for the correct trait (PD-1). Best of luck with everything and know Kelly’s and I prayers are with you.

  6. Keep moving forward, positive thoughts and prayer 🙏🏻 going out to your family! ❤️

  7. I think of Amber every day. She is remarkable and she is fortunate to have such a loving family, support network and medical options. That being said, it totally sucks that anyone, much less a young girl, should have to stare down cancer. Be brave and stay strong. You will always make the best decision possible; it could not be otherwise. Keep moving forward and take one day at a time.

  8. You got on a train, let’s just look at that, you got on a train! On March 22nd of this year, no parent, no human , no individual if in your shoes would imagine that in September you would be getting on a train! None the less walking on a train with an amazing young girl, a true Miracle!! They come in small blessings, a train ride, the first day of school, heck an argument between your kids! You all have come so far, God strengthens us all. Amber, you, your wife, and family are simply just awe inspiring. God has his hand on you, he won’t guide you astray. Thank you for this blog!

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