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So. Adler is home with a headache. My eye isn’t any better yet and we are just kinda fucking miserable and BEYOND over it. BEYOND over it. He made it to school one day this week. I called Chicago about this yesterday and as I assumed not much they can do. We see his neurosurgeon next week to discuss weaning him out of the brace and I will bring up said issues he’s having to him. One of the two neurosurgeons. Because he has two. Two now. Basically what they said, with much sympathy between both nurses, was he has tumors which cause pain. He’s on treatment which has side effects. End of story. But we live on the pages of that story and it sure does just suck sometimes. He’s been having a rough time. And yeah, so have I. So today with the gloomy weather we are feeling it. Feeling the suck. Man. We sure are.

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I got up before 6am to give him his pills. His alarm then goes off at 6:58am. He came out wincing. Last night he took Tylenol for his neck and shoulder. The past few nights his back and/or stomach have hurt. He said this morning “Chemo is really kicking my butt right now”. He’s supposed to be at school for testing today. He knows that. I know that. And he got upset about it. But he’s so tired and he said his whole body just hurts. I told him I would talk to his teacher and we’ll figure it out. Boris and I tucked him back in and hopefully he gets some rest. I got teary as he laid in bed and Boris licked his face and gave him some love. We chatted a minute as he got comfortable again in bed. Seeing him lay there knowing he’s fighting for his life does something to you. It stays with you, almost hauntingly. He’s a fighter and pushes through it but right now it’s exhausting for him. (and me). The pain and the discomfort have been here for so long, you think we’d be used to it but man does it still suck. A routine of pain and fatigue. I got a fire going since we won’t be leaving and all the space heaters are running and hopefully a new furnace will be installed today! I know he’s not bald and in a hospital bed but he is still battling cancer here at home. Everyday. This is what our journey looks like right now. And he’s afraid that this will all be for nothing as what if the treatment doesn’t work? What if it still grows again? And it will. Because that’s what it does. And he knows this. He’s talked about some deep stuff with me lately and it hurts my heart that this is how it is. I’ve done my best to reassure and give validation and comfort to him and his feelings. And his play therapist is hopefully coming by this week too. So maybe some good vibes today would be appreciated. Thanks. 🅰️🌈💙⚓

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✴️4 years ago today.✴️ So many ER trips. So many we were used to it. Had a bag packed for it. And this was when he was stable. Not on treatment. Just a headache doesn’t exist with a shunt and inoperable brain cancer. ⭐Thankfully it’s been awhile for a rush like this. Instead it’s trips to Chicago all the time for treatment now. What a journey. 🅰️🌈⚓💙 I have lost count of how many times we have been in an ER. His headache is bad. They did a shunt series x-ray. Waiting on that. IV fluids, a stress dose of steroids, meds for nausea and benedryl to offset the effects of the nausea meds and help his head maybe. They drew labs also. I haven’t seen him in this much pain in a long time. They called Chicago too. Aaron and I are patiently waiting……Worried. He vomited so hard he broke blood vessels all over his little face. He’s sleeping now but wakes up and says his head hurts a lot. They haven’t checked his temp since we got here but it was 101.7. This sucks.

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✴️4 years ago today.✴️ So many ER trips. So many we were used to it. Had a bag packed for it. And this was when he was stable. Not on treatment. Just a headache doesn’t exist with a shunt and inoperable brain cancer. ⭐Thankfully it’s been awhile for a rush like this. Instead it’s trips to Chicago all the time for treatment now. What a journey. 🅰️🌈⚓💙 I have lost count of how many times we have been in an ER. His headache is bad. They did a shunt series x-ray. Waiting on that. IV fluids, a stress dose of steroids, meds for nausea and benedryl to offset the effects of the nausea meds and help his head maybe. They drew labs also. I haven’t seen him in this much pain in a long time. They called Chicago too. Aaron and I are patiently waiting……Worried. He vomited so hard he broke blood vessels all over his little face. He’s sleeping now but wakes up and says his head hurts a lot. They haven’t checked his temp since we got here but it was 101.7. This sucks.

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