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We have a plan. The doc called me today. We will stop the trial after this course. Then he will be taking a break from meds. Treatment will stop for as long as he can. So basically until it grows again. And it will. That’s all contingent upon there being no new growth on his upcoming MRI on March 2nd which there is concern of that. He will be monitored during that time. We have a couple other drug options. Targeted drug therapy options. His new doctor taking over his care specializes in such treatments so that’s hopeful and I feel confident in that. The palliative care team will see us on our clinic day as well to evaluate his pain. Adler was under their care during treatment the first time for his buttock pain. They will determine the best route for his chronic pain needs. I’m glad to have them back on board and I hope they can help. We unfortunately know this road all too well and our options ran thin before. We almost ended up in Orlando in a pain management clinic. So. There it is. This life. This cancer life is hard. Very hard. It’s exhausting in undeserving and indescribable ways. We have been physically and mentally beaten down by it. We are doing everything we can just to keep our heads above water and keep Adler alive and comfortable. Seeking joy is also part of this journey because there isn’t much of it. We hope to get to Disney on this break and try to feel some of that happiness that has been stripped from us so many times. And judge not until you have sat with your child the way I have had to sit with Adler over and over again with pain and heartache and despair when all he wants is one normal year, month, week or day at school. That’s ALL he wants. It’s all he’s ever wanted. This isn’t Covid related. This is cancer related. There is a difference! This has been over half of his life spent this way. And believe me we know the alternative and we are thankful for every single second we have with him and we are focusing on the quality of those seconds for as long as we have time with him to count them!!!! Bold As Love and as always FUCK CANCER!!! 💙🌈🅰️☯️⚓

by | Feb 19, 2021 | Updates From the Road

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

Watching The Batman on HBO Max this now afternoon. He just woke up about 20 minutes ago. Meds down. Now we wait an hour before he can eat. Boris keeping him company. He can do some online school later. Last night after talking about how absolutely drained he is, he told me that it’s hard to describe but that he’s mad and that it’s hard to display it. I totally understood that. He’s mad about the pain and the fatigue and how he can’t do much right now. We both feel like we are kind of stuck. Trapped even. Especially him. So. Batman cartoons and hanging out is what’s happening.

by | Feb 17, 2021 | Updates From the Road

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

It’s International Childhood Cancer Day!!! Here’s a lil glimpse at what it looks like. Facts. 46 children will be diagnosed today and 7 will die today. And that’s everyday. Only 4% of all cancer research funding goes towards childhood cancer. Not nearly enough. Brain cancer is the leading killer of cancer in children surpassing all others. Adler deserves more. Children deserve more!!

by | Feb 16, 2021 | Updates From the Road

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