I swore I’d never make one of these, but after receiving a letter from Aetna last night and meeting with a social worker this morning who has talked me through it, here it goes.
On Saturday, January 25th, we joined the club that no one wants to be apart of. Everyday in the United States, 43 children are diagnosed with cancer and my bubbly, sweet girl was unfortunate enough to be 1 in 43. Acute Lymphoblastic Leukemia (ALL) to be more specific. I’ve gone back and forth and contemplated whether or not I should post anything, but I figured maybe it would make it feel more real the more I said it. You always see commercials with sick children and think, wow I can’t even imagine. I still can’t even imagine. We’re still trying to process everything and trying to find a new normal. In the meantime, we’re soaking up every minute and focusing on making our little girl as comfortable as possible as she begins her fight.
We’ve had a lot of support and my employer is accommodating me and allowing me to only work 2 days a week so I can be there by Mila’s side for every surgery and every procedure which I am beyond grateful for. Unfortunately, I’m really only working to pay for our health insurance premiums and to help with gas to get to and from work and the hospital.
Our lives have been flipped upside down and will never be the same. We will be staying at Connecticut Children’s Medical Center until at least March, and after that will bounce back and forth between home with a visiting nurse and the hospital for more maintenance treatment. This will go on for a minimum of two and a half years as long as all goes well.
The cost of everything will be worth it of course, but will be catastrophic. On top of normal utilities, student loans, we also now have to add in the cost of transportation (26 miles each way between home and the hospital) and whatever Aetna does not cover.
We have a long journey ahead of us, but we know Mila will beat cancer and make it look effortless in the process.
We will continue to post updates as we get them as often as possible. We appreciate every message, every card, and just every single one of you. It really takes a village and we couldn’t do it without our village.
- Amr Arar
- Linda Murphy
- Cailins Stack
- Juan Rivera
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