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Look. At. My. Son!!!!! You could learn a lot from kids, especially mine!!!! He can’t skate but he’s making the most of it. He always does. (now if I could adopt the same attitude!!). This life, this journey, is hard. So hard. Cancer is so hard. But look at him!! Look at that joy!!!!! Pure and true joy!!!! Thank you to his teacher for the pictures!!! Ohhhh. And it’s vacation dress day…..so we chose Universal Studios!! He’s in his Gryffindor robe and has a Bellatrix wand with a Hardy Potter t-shirt on!!!!

by | Jan 29, 2021 | Updates From the Road

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

Increased pain is not good. No matter how or why, it’s not good, especially with Adler. His cancer came on in the form of pain and when it grew again there was more pain. So naturally with history here, we are all concerned. I spoke with Chicago yesterday. Wasn’t exactly thrilled with the passive response but we’ve been in the game long enough to know how it goes. I relayed the information as I feel it’s very important as he is on a trial drug and enrolled in a study for the drug. He will also be seeing his physician here tomorrow. She always has good insight and offers options to aide in his constant care. I’m so glad we found her. He has an appointment in Chicago next week for his oncology check up and med pick up so I am sure we will discuss more then. And he has an MRI in March. They will scan him sooner if need be but again, we’ve been doing this long enough to know rushing it isn’t always necessary. But last night it was Adler saying “I hope my tumor isn’t growing”. I asked if he thought it was. He said “Well, the pain is an indicator”. And he’s right. It is. We both agreed to we’ll see in March. Then the dreaded talk of what if he is no longer stable. Other options and he’s got more life to live. And what if the surgeries were all for nothing and should we move to Florida so he can go to Disney anytime he wants. No parent should have to talk about quality of life and death so much. It just shouldn’t be a thing. But in our life it is. It goes hand in hand with it. And NO one should have so much pain. 7 years he’s been dealing with pain. Pain of some sort. And at the root is cancer. His cancer. Pilomyxoid Astrocytoma metastasized brain cancer. 10 small tumors in his brain. His primary tumor in his cervical spine and his lower lumbar spine is thick with the same material. All inoperable. Living with it. Thankful for it. So thankful. But man it’s hard. 😞😞

by | Jan 28, 2021 | Updates From the Road

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