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Stable scans. We will be back in 4 months for another MRI. That’s Christmas time! It is beautiful in the city for sure that time of year. She explained more about the possibility of growth happening and how they are coming up with new protocols on when to step in with treatment and such and how we will just continue to watch it for now. But. Adler did test positive for ankylosing spondylitis. It’s an inflammatory arthritis that typically causes issues with the back and large joints. This could account for some of his pain. He will need to see a rheumatologist but his oncologist wants to consult with her colleagues about it. We did the test because Aaron and others in his family have it and our amazing local doctor suggested we test Adler suspecting it could be a culprit to his pain. Now. We will wait and see what all the other docs have to say. I want his pain doc in Orlando to know about it as well. Like his oncologist said “We can’t blame the tumor for everything now can we??” Cancer humor!! We also have a 6 month check up in Orlando which is February. Maybe. Just maybe one day I will get to unpack our life???? Back home for now. One day at a time and appreciating them all!!!!!!

by | Aug 25, 2021 | Updates From the Road

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

Stable scans. We will be back in 4 months for another MRI. That’s Christmas time! It is beautiful in the city for sure that time of year. She explained more about the possibility of growth happening and how they are coming up with new protocols on when to step in with treatment and such and how we will just continue to watch it for now. But. Adler did test positive for ankylosing spondylitis. It’s an inflammatory arthritis that typically causes issues with the back and large joints. This could account for some of his pain. He will need to see a rheumatologist but his oncologist wants to consult with her colleagues about it. We did the test because Aaron and others in his family have it and our amazing local doctor suggested we test Adler suspecting it could be a culprit to his pain. Now. We will wait and see what all the other docs have to say. I want his pain doc in Orlando to know about it as well. Like his oncologist said “We can’t blame the tumor for everything now can we??” Cancer humor!! We also have a 6 month check up in Orlando which is February. Maybe. Just maybe one day I will get to unpack our life???? Back home for now. One day at a time and appreciating them all!!!!!!

by | Aug 25, 2021 | From The Road

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

All. Done. He was in the tube for 1 hour and 50 minutes. Breezed through it. He watched Frankenwienie and part of Aladdin. I read a book seated by his feet as usual so I could touch him every so often. The IV and prep time took just about as long. It’s now storming in the city and we hope we can order some food for delivery for dinner. Tomorrow is his oncology check up and results of his MRI. Oh and he’s 5’6″ and a half per the measurement today!! I had a lot of emotions as I sat there and looked at his long body on that table that goes in and out of the MRI. Remembering how little he was when this journey began. How we had to wait at that yellow line and watch his tiny hands holding his stuffed animals while the child life specialist held the others and he walked in alone with nurses, not me. He would have to ve sedated but at age 7 he decided he didn’t want to anymore. So. Awake it is. Brave is an understatement for Adler. He’s a damn hero. A cancer warrior badass!!!

by | Aug 25, 2021 | Updates From the Road

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