02/19/2025
In this post is the family’s Amazon wish list if you are interested in donating
Total transparency.
THIS.IS.SO.HARD.
This is much harder than when Elijah was diagnosed. Her age, her tumor burden, her ginormous distended abdomen, her swelling, her pain, her bruising, her lack of ANY and ALL happy emotions. She has none. She does not smile. Its almost like she can't. Its not from the pain. She's now on morphine. She was like this before and after morphine. Its likely because her tumors are pressing on something in her brain causing the cognitive difference( im guessing). But it is HARD. That may be the hardest part for me. Talking to her and trying to get her to smile, to only see my sweet girl who looks at me like she doesn't recognize me. 😭. THIS FEELS SO WRONG.
Sitting here, I feel like I have moments of panic. My hands get sweaty, blood starts feeling like it's racing. I'm ready to fight for her but I need her body fight for itself. I cant do that for her. I can advocate to all ends but I cannot make her body fight. Its the most helpless feeling, really. I can feed her...and I do. ALL DAY LONG. because it's the only thing that brings her comfort, really. 🩷. Somewhere in there, she has to know that I'm her mama. She's essentially emotionless and it's heartbreaking. She just stares. She will look around at different things and people but with no expression. She doesn't smirk when talked to... just a blank stare. 😭😭😭😭.
The silver lining for today is that opthalmology came by and said her eye bleeding has not changed her vision at all. The insides of her eyes look fine from where he's standing. (It's likely the tumor ls are effecting her vision because they're pushing on the occipital lobe but... the eye itself works).
Chemo ended today. Tomorrow, they'll inject her with a radioactive Iodide. Then we wait 24 hours and she has a MIBG scans. This is a scan specific to Neuroblastoma. The radioactive iodide uptakes in the cancer cells. If you followed Elijahs journey, I often posted a photo of his scans. The test this time really won't tell us anything we don't already know. Its everywhere. We know that. It'll be used to as a tool to compare her end of chemo scans.
I don't see us going home before the weekend. With elevated BPs while on 2 blood pressure meds, her not pooping in 2 days despite meds, the bleeding in her abdomen, and the swelling, and bleeding eye and the blood clot in the brain... who knows when we will get out of here.
For now, I'm snuggling this sweet baby girl and praying to a God who can heal her. He CAN do that. 🩷.
Please pray for her healing ❤️🩹 and my heart. 💔
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For those that have prayed. Thank you.
For those that have supported our family financially or in other ways, Thank You.
We are very thankful for all the support, in all forms! 🩷
For those that have asked how to donate or what we need. Mostly, we need prayers.
Monetary donations are always helpful. The funds raised will allow Tim (dad) and myself to take time off while she is in chemo, and for us to go to NYC to MSKCC, when we can, for treatment. Being with her is most important right now.
Here is Whip Pediatric Cancers fundraiser link:
https://www.facebook.com/share/p/1A5iERYJPM/
Or you can though paypal. My tag is
PLEASE do not feel obligated to give. Your prayers are the biggest need here. 🩷 Pray for her miracle.
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Thank you all so much.
-Sam
