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This very much how I feel this morning as I sit next to Adler who’s resting in a darkened living room on the couch with the diffuser pumping out All In Your Head essential oil blend because he woke with a nasty headache at about 7:20 am. This coming after yet another late night with pain. Pain in his left buttock and leg and if you’ve been following along you know the buttock pain was how it all started and how it rolled around again. He’s been miserable for days. It never stops. There’s no breaks. None. Don’t people dare complain about needing one because I have no fucking idea what that’s like?? Nor will I. Will we. Will he. Especially him!!! He just wants relief. He just wants to go to school. He just wants one goddamn day of normal. It’s not asking too much. It’s not asking for enough actually. 7 years. 7 fucking years. YEARS. 8 with pain. CHRONIC PAIN. We can roll out a vaccine in mere months but there’s NO way to help my kid unless we travel states away and relocate for a month. I do not understand it. And treatments are limited for kids. Miniscule funding and less attention than ever. It’s more needed than anyone seems to care about. And yeahhhh sure science is working on it but for fuck sake. He has inoperable metastasized brain cancer. It’s in his brain and spine and it is hurting him. It hurts him evey single day. And if you come at me with some bullshit about cancer being a money making business, we can have a conversation in my drive way about it and if you’re my age you know what that means. I am just so angry. The kind of anger that is quiet and loud inside all at the same time. Let’s just hope he feels better later today.

by | Jul 7, 2021 | Updates From the Road

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We leave for Florida this week. He will begin the program on the 12th. He’s been uncomfortable all day. He woke with a headache and it’s been off and on all day. His left leg has hurt from the buttock down. His lower back has hurt too and his lower legs both right and left where the pain usually resides in the upper ankle area. Oh. And his stomach wasn’t happy either. Poor thing is a chronic pain mess today. There’s so so much hope with this program. Especially the hope for him to begin school normally and go full time. His next MRI is the end of August. There’s always the worry of tumor growth with this increasing pain. We really hate cancer tonight.

by | Jul 6, 2021 | Updates From the Road

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

He watching a guy walk across Norway on YouTube. He’s nauseous. He was nauseous last night too. The last two nights his pain has seemed to be worse as well. He’s uncomfortable today too. I have text his local doc and if I feel it’s necessary I will contact Chicago too. But. While we are in this waiting period, it’s hard. Harder than when on treatment because at least then there is more of a why to it all. We were supposed to meet friends for ice cream but that’s not happening now. And tomorrow is lake time with the family and he doesn’t want to miss that. It. Just. Sucks. No other way to put it. This picture says so much and with words I could describe it all but sometimes, sometimes, I don’t want to. I live it and witness it and share it but today, today it just stings too much to do that. So. I’ll keep sorting the weeks of behind laundry preparing for the month away while he sits in the living room with Happy Tummy essential oil blend made for him in his diffuser watching YouTube quietly. I’ll check on him too much and my worry will hang out with me and my laundry. Happy fucking Friday.

by | Jul 2, 2021 | Updates From the Road

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