Well. Why not make this post on World Cancer Day?? After this month, Adler will stop the trial. Adler’s oncologist who is unfortunately leaving Lurie Children’s Hospital, doesn’t feel it’s working as it should anymore. There are other targeted therapy drugs to try but needless to say we are pretty devastated to know this one didn’t and we are concerned about Adler’s future with treatment. Adler’s pain and increased side effect symptoms are what’s lead to this decision and to worry about possible tumor growth. Pain management and physical therapy for Adler are necessary so that’s the next step. He will be enrolled in the pain clinic at Lurie Children’s Hospital and he will be evaluated here for new-ish physical therapy and he will most likely be evaluated by the head of pediatric physical therapy at the Shirley Ryan Ability Lab in Chicago as well. Then after his next months MRI we’ll most likely stop this med especially if there’s been new growth and begin another targeted therapy drug. There’s lots of factors here but he listened to all of our concerns yesterday and we have a the basics of a plan. A new plan of which we will know more about the direction of said plan in a month. There will also be new oncologists in place for Adler’s continued care at Lurie Children’s Hospital. We are all upset about this. This trial gave us hope and now it’s not working as it was told to us that it would. He had the biopsy that he lost his arms for this trial drug to see if he qualifed. Regaining the use of his arms was unbelievably hard and daunting for him. He then had to have fusion and decompression surgery because of the biopsy surgery. We are disheartened from all of this. We are scared too. We feel like we’ve gone in circles and not in a good way. And along the way, so much pain. And was it necessary?? We don’t know because we had to try. We are thankful there are other options but the longer we are on this journey hope begins to thin. You can’t help but lose some of that along the way. Not all is lost but we do feel pretty lost ourselves today. So. We ask for your prayers, good vibes, love and light and continued support as we venture into unknown but sadly known territory again with Adler. It’s about quality of life and living not just existing with cancer for him. And to continue to hope that the next treatment works as it should to stop, slow and decrease his tumors. He said “I don’t care if I have nausea, diarrhea, my hair falls out and rashes, I just don’t want pain”. So that’s the goal, no more pain. The reality of cancer is very very real today. And on this cold winter day things again, look and feel a little different.

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

Adler