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Same room different angle 7 years apart. Both tired. Both not hungry. One during treatment the other 7 months off the second treatment. One with a fentynal patch for pain. The other 5 weeks post pain management program. One with hair. One without. Both with cancer. Inoperable metastasized pilomyxoid astrocytoma brain cancer. To the unknown eye only one will be seen with cancer because it looks obvious. The other “he looks great” is the common theme. Sure. He does. But it’s only a look. It’s only on the outside. The cancer still remains on the inside with no end in sight. Metal and screws added to the mix. PTSD. Depression. Anxiety. All hanging out too. The pain still there everyday. The fatigue plaguing him to the point he feels like a zombie. The side effects of nausea, stomach pain, muscle weakness, headaches and more are still there too. Lasting for who knows how long?? September is Childhood Cancer Awareness Month and though Adler may not look the part of a cancer kid, he is. He sure is. Living with it. Just because he doesn’t look like it doesn’t mean it’s not there.

by | Sep 21, 2021 | Updates From the Road

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

He is better now but a headache means big worries until the better part. He woke with it just before 6am. I gave him meds and got the bowls and ice packs. Classic Adler headache routine! He ended up just drifting off to sleep where he stayed asleep for over an hour. I sat quietly in the darkened room with him trying not to sniff or sneeze loudly as he so lovingly shared his sniffles with me that he had last week. Lots of crud going around. Who knew you could still get just a cold and just a headache and it’s NOT Covid??!! Pandemic/chronic migraine/brain cancer/hydrocephalus humor!!! But. Thankfully the headache is not as bad and the nausea is better too. Nothing makes me happier than that first drink and first snack of like a banana or crackers when he’s finally ready for it!!! Never a dull moment around here. 💙💙💙

by | Sep 13, 2021 | Updates From the Road

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

I know it is. I know because after the talk we had last night just he and I while sitting on his bed with him before he went to sleep took it to another depth and left me feeling so stranded and helpless for him…..I know it’s hard for him. Feeling defeated and left with no goal. No endgame. No finish line. Pain has plagued him for so long now that even some return to normal has left him still feeling empty and rather hopeless. The shinny of reality has worn off for him. Another new doctor’s visit looming and grabbing for more answers and direction with a possible new diagnosis is so regular for us and for him that it’s not even the classic silver lining anymore. Hearing what I heard from him was so heavy and honest that the deep breaths I took walking down the hall afterwards from his bedroom to mine were not enough to even begin to cleanse me. It stuck with me until the morning. Another Adler and Mom talk brought to you by cancer and pain. I hate them but I am also glad we can have them. His openness with me is necessary and his ability to express himself and his feelings is beyond special, it’s sacred. These talks have aged with him. Gained emotional potency and man do they pack a powerful punch. I told him when we were done that I appreciated him talking to me about it all. Navigating through it with him is an honor to me. I told him I was oddly happy he still wanted to talk to me about all of this stuff and he said he always would. I hope that he does. I told him that he is a very very amazing person and that I truly admire him for absolutely everything he has had to go through. I patted his leg after I stood up. I kissed his arm like I always do and touched his new hair cut hair and smiled at him in the dark. So here I am battling my own sniffles that he so kindly shared with me. Sitting in the family room by myself with the shades still drawn listening to the hum of the refrigerator while everyone still sleeps trying to find some sense in it all. Trying. I’ll let the light in later but not quite yet……

by | Sep 12, 2021 | Updates From the Road

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

A good view of Adler’s shunt since he was losing his hair. Soon it would all be gone including his eyebrows and eyelashes. The suckers on the bed were for port flushes. It gave Adler a nasty taste in his mouth so he would have them ready. He preferred the blue ones. (He liked those anytime, not just for Port flushes) They had a lollipop tree that the lids could pick from. One time all the ladies at the bank gave Adler a huge bag full of blue suckers. Lisa Namisnak was part of that!! We spent hours at chemo. Hours at home in pain. Still do. Hours in hospitals waiting for doctors, tests, therapies……Hours that add up to this hell of a journey we are on that some days seem never ending even when you look back to pictures like this and are so thankful for the days you still have. September is Childhood Cancer Awareness and Hydrocephalus Awareness Month. Here it is in one picture. 💛🎗💙💦

by | Sep 11, 2021 | Updates From the Road

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