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Welp. We tried to go to school. We drove all the way there even. But the nausea got worse on the way and he was lightheaded and kinda dizzy. So after a sad deliberation in the car, we came back home. He’s missed the whole week and was looking forward to cozy comfy day thanks to his classmates winning it at the auction last year. So, we’re here. Hanging on the couch and I am keeping an eye on him. Poor kid. 😔

by | Feb 5, 2021 | Updates From the Road

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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.

by | Feb 4, 2021 | Updates From the Road

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10 more days of weaning…..then…..out of it for good. He took his first shower without it on today. He said it felt so good. We head to Chicago this afternoon for appointments tomorrow morning. We have a lot to talk about as the concern is heavy, for all of us, especially Adler. Trying to find the balance has NEVER been easy on this journey and sometimes the advocating has to get a lil loud. I am hopeful they will listen and have some ideas tomorrow. Again, we’re not new to this so I know the drill. I wish we didn’t know because with that knowledge of the past and worry of the future comes fear. Too much. Too often. But hey the sun’s out and it should be a decent drive to the city!

by | Feb 2, 2021 | Updates From the Road

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A late night that turned into the next day as we were up untill nearly 2am. He was very hot, nauseous, headache, stomach pain and back pain and his legs hurt. This trend seems to happen about 2 hours after he takes his night time dose. So. I got the bowl just I’m case, rolled Happy Tummy oil on his chest, tummy wrists and had him take deep breaths of it. I applied pressure to the nausea point per our acupuncturist on his wrists too. Rolled the muscle oil made just for him (so was the happy tummy in it’s beginning) on his legs and massaged them for him. Then he used the deep tissue massager on his legs. I had the TV on so we found a movie to watch and talked about all kinds of stuff. I also ended up giving him Tylenol too. But. I will leave you with another thing that Adler said that will stick with me forever…… “I don’t care if I lose my limbs, like my arms didn’t work and my legs hurt and I couldn’t walk well, I just don’t want to lose my mind”. These are the things that he thinks about. These are the things we talk about. These are the things that come with cancer.

by | Jan 31, 2021 | Updates From the Road

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