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He’s had a headache and back pain since yesterday evening. I’ve had a headache too. We both took meds. He’s in the dark working on homework and I packed and ran a bath. The cancer life isn’t just bald kids in hospital beds. It’s maintaining when you’re suffering. It’s breathing when you’re underwater. It’s patience and perseverance. It’s anguish and grief but a thankfulness that is undescribable and can only be felt when I hold him and feel his warmth. Too many days spent like this. Too many. May the water in my bath calm and cleanse my body and my mind. Disney music playing!!!! Soon enough, I hope that’s what I’m packing for!!!!

by | Mar 1, 2021 | Updates From the Road

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Low key weekend. Prayer and anointing yesterday from Pastor Mielke. Today, he saw his best friends for a few hours. After they got dropped off at home, Adler complained of a headache and his back hurt. That’s been all afternoon. But. He still wanted to get his homework done. After a decision between his teacher and I, he’s been doing school from home this past week and until he feels up to it that’s how school will be. Keep it consistent by doing his work online and his teacher coming by to help. It wasn’t what we wanted but for now it is what it is. He got it done even at almost 11pm!! My nerves are kicking in about the MRI and results and appointments. We all just want this over with. Especially Adler. We head to the city tomorrow afternoon. MRI Tues and appointments Wed. Bold As Love. 🅰️🌈⚓☯️💙

by | Mar 1, 2021 | Updates From the Road

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

Adler’s form of brain cancer is considered rare. Pilomyxoid Astrocytoma brain cancer is a more agressive form of Pilocytic Astrocytoma. It’s usually found in children under the age of 20 especially infants. It’s also considered rare that his primary tumor location is in his cervical spinal cord but they have been found in the spinal cord with this type of cancer. He also has 10 small tumors in his brain and his lower lumbar spine is thick with the same material in the tumors. That’s how he was diagnosed 7 years ago with a lower lumbar spinal biopsy.

by | Feb 28, 2021 | Updates From the Road

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

Another late night last night. Me “How’s your pain?” Adler- “You know when you see pictures of clouds with lightning all in them?” Me- “Yes” Adler- “That’s what it feels like, inside my body. It’s lit up with pain in different places” (Enter lightning sound effects provided by Adler!!) Me – “Oh buddy, I’m so sorry. That was a sadly awesome description. I’m gonna write it down. You need to tell the palliative care team this exact description”. And it is all over. His back, his stomach, his legs, his neck, his joints like knees and wrists and shoulders too. So. We were up until almost 2 am again. He described his buttock pain at age 4 like being struck with lightning. The docs were all impressed with that description for such a young age. Heating pads in every room. Neck wraps to warm in the microwave. Gels, creams, patches, ice packs…….God you name it, we have it for pain. I guess the storm is still there. It’s just all over now. He’s delt with more pain than any human I know. I hate it. I just want to take him away somewhere and let his body try to heal and get stronger. So many questions. So much fear and worry that doesn’t seem to settle. Just like lightning. He’s an absolute warrior. Truly.

by | Feb 26, 2021 | Updates From the Road

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