Headed to Boston!
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The Blick Family
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The Blick Family
Things are moving at lightning speed right now, and there is a lot to update, but the biggest thing I continue to be amazed by is how incredibly strategic and thoughtful Randi and Adam are being about every decision surrounding Jonah’s care. They are balancing an unimaginable amount of information, decisions, appointments and emotions while still being Mom and Dad to three boys and trying to keep life as normal as possible.
And the way people have shown up around them has been unbelievable.
Over the past week, an incredible medical advisory team has formed around Randi and Adam to help them navigate all of this. Lindsay Sikora, Stefanie Lincoln, Adam Cohen, Barb Frist, the Rally Foundation and Ian’s Friends Foundation have been invaluable. Someone from this group has been on virtually every doctor call and in every meeting, making sure every question is asked, every answer is documented and every option is thoughtfully considered.
A very special thank you to Stefanie Lincoln, who has somehow taken what could be an impossibly overwhelming amount of information and created order around it. She is keeping track of every doctor we have spoken with, every conversation, every question and every answer, and making sure absolutely nothing falls through the cracks. I cannot adequately explain what a gift this entire group has been to Randi and Adam.
We have learned an enormous amount over the past week. One of the biggest things we have learned is that with a tumor this rare, there isn't one simple, linear treatment path. Every decision has to be made specifically for Jonah and the biology and location of his tumors. We also know that time matters and that we need to move quickly into treatment.
Through all of this, Jonah has been absolutely incredible. He has not complained once. He continues to make jokes, smile and somehow just roll with all of these scary, unknown things being thrown at him.
Since my last update, Jonah has been fitted for his special proton radiation mask, had plenty of bloodwork, a spinal tap, had his braces removed in preparation for treatment, and completed another specialized MRI.
This morning we had a long meeting with Dr. MacDonald, the lead oncologist at CHOA overseeing Jonah’s care. After reviewing everything and all of the conversations that have taken place, everyone agreed that the best next step is another surgery to try to safely remove as much of the two remaining tumors as possible before beginning radiation.
And this is where we got some really incredible news.
Dr. Baird at Boston Children’s Hospital reviewed Jonah’s case and feels very confident that she can do just that. And she has opened a spot to operate on Jonah THIS FRIDAY in Boston.
So, as of today, we have a plan.
Jonah, Randi and Adam will fly to Boston tomorrow! Jonah will have surgery Friday. If everything goes as expected, he will spend approximately three nights in the hospital, come home in time to enjoy Labor Day weekend and the return of college football, and then begin radiation in Atlanta on September 8.
Of course, we know by now that dates and plans can change quickly. But this is the plan today, and it feels really good to have one.
The Boston and Atlanta teams are communicating and working together to make sure Jonah receives the best possible care at every step. And because Jonah recovered so incredibly well from his first brain surgery, Dr. Baird feels optimistic that his recovery from this surgery can be very similar.
We also got a BIG WIN today: Jonah’s spinal tap results came back with no evidence of cancer in his spinal fluid. This is GREAT NEWS, and we will take every single win we can get.
After my last update, when I asked everyone to light candles for Jonah, I received SO many pictures of candles being lit for him. Randi and Adam saw every single one. They truly could not believe how many people stopped what they were doing to bring some light into their lives during such a dark time. Please keep the prayers, blessings, positive thoughts and light coming. They feel it.
And thank you to everyone who continues to show up in all of the other ways too. The meals appearing at their door every night, the calls, connections, research, rides, help with the boys and the million other things happening behind the scenes are making a very real difference. It was really special having Randi's sister Holly fly in from Uruguay to visit, Randi's college best friend Yael showed up Thursday and hasn't left yet and Adam's dad also made a special trip. The family is surrounded by love at every second and that will never stop.
While Randi and Adam head to Boston with Jonah, Yael and I will be with with Logan and Micah initially. Their grandparents and the Cohens will take over with the boys for the weekend so I can fly to Boston Friday and be there with Randi, Adam and Jonah for the surgery.
Somewhere in the midst of all of the doctor appointments - we also managed to throw a little YES DAY magic into the middle of all of this Saturday night at the Atlanta United game.
Somewhere in the midst of all of the doctor appointments - we also managed to throw a little YES DAY magic into the middle of all of this Saturday night at the Atlanta United game.
Thanks to Jaime Binnicker, Brad Guzan surprised Jonah at his seats and spent some time hanging out with him. And then somehow the night got even better. After the game, Jonah and his crew got to go down on the field, where Jonah had the honor of handing the Golden Spike to Atlanta United’s Player of the Match — Miggy Almirón, one of Jonah’s favorite soccer players. You truly could not have scripted it any better.
A huge thank you to Mark Katz for the incredible club tickets and to everyone who continues to offer tickets, experiences, connections and anything else that might put a smile on Jonah’s face. I can PROMISE you we will keep these moments coming for as long as we need to.
Because one thing has become even clearer to me over these past two weeks: finding joy wherever we possibly can right now really matters. We can’t change the circumstances, but we can change how they feel in the middle of them. And so many of you are helping do exactly that for Jonah and his entire family, nonstop.
There is a long road ahead, and we know that. But right now, it feels really good to know that an extraordinary team is in place, a plan is in motion, and everyone surrounding Jonah is doing absolutely everything possible to give him the best possible outcome and beat the statistics.
Thank you for continuing to love this family so fiercely. Please keep praying for Jonah, for Dr. Baird and her hands on Friday, for a safe and successful surgery, and for our boy to keep doing exactly what he has been doing — smiling, joking, fighting and being Jonah. And in Jonah's words...."can the Gators please not suck again this year" =)
(PS - **Please note: We will not need meals this Friday-Monday so we will be removing these from the meal train)
(PS - **Please note: We will not need meals this Friday-Monday so we will be removing these from the meal train)
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