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Unexpected good news!! Stable!!!! Another MRI in 3 months. Focus on the pain management program and getting Adler comfortable. His doc does expect it to grow eventually. It’s the nature of these types of tumors. It’s what they do. It’s now scan by scan. A wait and see. And keep an eye on the increased pain. So. Florida is next for the evaluation in June. If insurance approves it quickly and no one takes one of 2 spots he can go July 12th. Next spot open after that is August 9th. We are all hoping for July. The program is 5 days a week for 4 weeks. This will be one hell of an adventure for us. A very necessary piece in this cancer puzzle. Stable is good yes. Especially since if he needed to begin treatment now or soon, on top of the pain management program, it would be very hard to manage both and unknown side effects and how his body would react would be difficult especially from afar. So. We will take this as good alignment of the stars and run with it as long as we can!!

by | May 26, 2021 | Updates From the Road

from Life with our little Super Hero Adler Bear https://ift.tt/3aDpcoP

Over breakfast, before Adler was up, Aaron and I talked about this week. Adler’s first MRI since we stopped treatment is on Tuesday, my birthday. What will it show?? There won’t be a chance of shrinking as he’s on nothing to achieve that.There could be growth or it could remain unchanged. Those are the options. And if there is growth, how long will we “watch” it before treatment again?? Will the new oncologist have our back the way the last two have? We feel so out in the cold during this limbo period. The pain doc here didn’t offer much and with Lurie not having any options for chronic pain we discussed Nemours Children’s Hospital and our impending trip there for his evaluation and our hope for his qualification and a hope to get into the program sooner rather than later!! Our eggs are in one basket there. Kind of a last ditche effort on the chronic pain front. We were literally on the same path two years ago. It’s so hard to think of how long we have been on this journey and how long Adler has suffered. We have had these conversations so many times. Too many. Tears came as I cleaned up the plates from pancakes and washed out the bowl looking out the windows over the sink watching the sprinklers run wishing Adler was playing in them as a toddler in his superhero swim trunks and matching rash guard. Before the pain. Before cancer. Before living in a constant state of survival, worry, fear and stress. Trauma is alive and well in this house and has found its place in our daily routine especially days before an MRI. It never gets easier no matter how much we are used to it nearing over 40 of them for Adler. Keeping our heads and the fight up as we head into summer. May the heat burn away our fears and fuel the hope that we have held onto for so long now. And to which we will never let go of. Ever.

by | May 23, 2021 | Updates From the Road

from Life with our little Super Hero Adler Bear https://ift.tt/3aDpcoP

I got to spend the day with Adler and his class at what I know as Camp Amigo. I was there 31 years ago myself in 6th grade. How cool to be there with him now. It was a special request for me to be there and I am so glad I was. And I drove that golf cart like like pro!!!! I drove Adler and his buddy Josiah around a couple times. What a beautiful day it was. We are tired and a lil dirty but I’m so happy he got to participate in this fun day with his classmates!!!

by | May 21, 2021 | Updates From the Road

from Life with our little Super Hero Adler Bear https://ift.tt/3aDpcoP
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