Hi friends!
I'm so grateful for so many of you who continue to follow Eddie's progress here and on our Facebook page. (If you're not a member there, please find me on Facebook and I'll be happy to add you). Those of you on Facebook know that these last few months for Eddie haven't been easy.
I've lost track of the number of times since our Spring Giveaway Eddie's been in and out of the hospital. A bunch. And every time, he's been in ICU. He's really had a lot of struggles with his breathing, and required bipap and a lung biopsy. The doctors felt that he may have Graft Versus Host Disease (GVHD, or transplant rejection disease) in his lungs.
They were right. Sort of. He's got GVH and something else, and it's enough of a mess in there that they're encouraging Eddie's mom to add him to the lung transplant list.
That's right. I said lung transplant.
Our buddy, who survived a bone marrow transplant six years ago, and hasn't yet recovered fully from it (though he is, thank goodness, aplastic-anemia-free), is now undergoing tests and in and out of a bunch of a meetings to determine if he can be added to the list, and how far down he'd be.
Lots of you ask me sometimes how Eddie's mom, Kori, keeps going. She tells me she'll keep going as long as Eddie has fight in him. But honestly, friends, I've never seen them this worn out, this stressed, this shocked.
I'm shocked, and I was pretty sure I couldn't be shocked much anymore.
Obviously, I don't know all the details. Lately Kori and I have been catching up on the phone in between her daily visits in and out of Boston (or their hospital stays) and our conversations are sometimes briefer than we wish they could be. But I know it's serious. I know that bone marrow transplant team, and I know they wouldn't even talk with Kori about the option of a lung transplant if they didn't feel it WAS an option.
I'm scared for Eddie. And for her. How does a mom survive another round with a totally different kind of transplant? How will the family pull through this time?
In the meantime, I've been so encouraged by your donations this past spring. In a very awful twist of irony, their family car (which Eddie's Fund had just finally paid off this past fall) was totaled by a truck while Kori was bringing Eddie home from the hospital one afternoon. Thankfully, they were not injured...the semi realized he was crushing them before he got too far. But the car was totaled, and they needed another...and now, friends, Eddie's Fund is trying to rise to the occasion again and help them out by paying their car payments every month. It's one way I know we can help to alleviate the cost of their life; a consistent bill we can pay, and we will.
(By the way, my real goal is to pay off the entire car, at about $9,000, but with a dissertation study looming this fall, I'm trying to recognize my limitations and realize I can't plan a huge fundraiser just yet. But if you're interested in helping me pull one together, maybe we can plan one for spring or next summer. It just kills me to pay interest for years on a used car, and I know if we got enough people out to an event--a dinner, an auction, a Zumba-thon, a race--we could raise the money in one evening).
We'll pay those car bills this year. When Orilus and I first started Eddie's Fund, we thought we'd help out for a few months. A few months has turned into 6 years. Along the way, Kori and I keep looking for ways to increase the family's financial independence, but the crises in their life--their need for immediate, ongoing relief efforts--have just not subsided. So thank you, friends. Thank you for understanding that a family you haven't really met really is out there, and really does need our help, and for trusting that 100% of all you've given is paying bills and keeping this family going in and out of Boston, and keeping their lights on, and their medical bills as up-to-date as we can. I pay all their bills directly--from Eddie's Fund right to the electric company, or hospital, or bank--and I'm always humbled to think that Eddie's family trusts me to do that, and to be that involved in their financial lives.
I wanted to share this update with you tonight. And I wanted you to know that you're amazing. I'm so grateful that you've walked with Eddie through these long years; I know that I wouldn't have been able to bear seeing Eddie suffer so much without knowing there were handfuls of folks out there cheering him on through Eddie's Fund. I hope you'll join with me this month in praying for wisdom for this family, as they are faced with so many tough decisions about his future care and will certainly make a decision about the lung transplant very soon.
And stay tuned...I'll be launching a new giveaway (a simple fundraiser I can run from behind a laptop during a busy fall semester) very soon. In the meantime, if you'd like to donate, we're grateful--and it's easy! Use the PayPal button on the right side of this website to donate online, or if you prefer to use snail mail, you'll find the address to Eddie's Fund at Eastern Bank there, too.
Much love, and all my thanks,
Melissa
