My cousin, Sarah began this page for us a while ago, before any of this actually started: Lee had a nephrectomy in Feb, 2015 to remove a polycystic kidney weighing more than 12 pounds (the other, bigger one was left in); the whole family moved to Chicago to be with Lee during the kidney and bone marrow transplant study procedures (the whole thing took 3 months in the spring); Lee received chemotherapy and radiation; then he received a kidney from our good friend, Kristi, as well as her bone marrow.
Sarah started this page as a way to help us afford the above expenses (medical expenses, travel, rent and living in Chicago for 3 months for all 11 of us, all the while Lee wasn't working). I was going to add one final update to this page at thebeginning of September, after Lee got out of the hospital with pneumonia or pleurasy, because Lee was doing fine, and we were home, he was starting to go back to work (although we hadn't had a chance to even begin to look at the bills), to thank everyone and let you know this adventure of our life was over.
However, my last update turned into being the first of a whole new chapter...Lee ended up developing Graft vs. Host Disease of the gut (gi tract), so he's back in Chicago. In short, the bone marrow he received from Kristi did it's job so well, it helped Lee's body accept the new kidney, but it went above and beyond, and started fighting with the rest of his cells, thinking his cells were the ones that didn't belong in his body. This caused his gi tract to become inflamed and unable to process anything. He started out started out having diarrhea, went to the hospital in Syracuse, continued to get worse, then it turned to straight blood. He has been on bowel rest for over 7 weeks now (which means he can't eat anything).
So this "new" page update is to let those of you who have been following and supporting us know how things are going, where we are, etc. Lee has worked very minimally since last Christmas time...and seeing as he still is unable to eat food, I'm not so sure he will be back working anytime soon (or even when he'll be able to go back home), there are a lot of bills piling up, and we have 9 kids.
We would love to have you continue to follow us on our journey, support us, and share our story with others as well. We are believing that this story will have a happy ending!
Here's the original description: My cousin, Angel, and her husband, Lee, are two of the most amazing people I know. They have a great marriage of 23 years, strong faith in God and 9 children - 4 biological (ages: 16, 14, 13, 11), 4 adopted (ages: 11, 10, 9, 7), and 1 to be adopted (age 9) on Feb 18. Angel has her PhD in education and uses that to homeschool all of their children.
Lee is currently suffering from a genetic disorder known as Polycystic Kidney Disease (PKD). Over the last year and a half, the cysts in his kidneys have caused them to be the size of footballs, causing him much discomfort. He is scheduled to have one kidney removed on February 24th in Chicago.
When looking at his treatment options, Lee discovered a clinical study in Chicago, in which he could have a kidney transplant as well as a bone marrow transplant from a qualified donor. Their good friend, Kristi, has offered and been approved to give Lee one of her kidneys and bone marrow! The transplant will take place on April 23rd, after Lee has had a week of chemo and radiation, to prepare his body to accept her bone marrow after the transplant. Lee will then need to remain in Chicago for three months, spending 3 days a week in the hospital to be monitored and treated for any issues. The whole family (all 11 of them) is planning on moving there for that time to be with Lee.
Kristi will need to be in Chicago the week of Feb 12 for another testing day, a week in March for the bone marrow collection, an additional trip for pre-op testing and again in April for the transplant.
Angel and Lee need your prayers, please, and a lot of financial assistance. Lee is self-employed and will not be working and, therefore, will not be making any money while they are in Chicago, while he’s recovering from the nephrectomy, while he’s not feeling well before then and while he is receiving dialysis in March and April…you get the picture.
They also need affordable housing in Chicago for 11 people within walking distance to Northwestern Memorial Hospital. It’s located on East Huron, St. Clair, and Erie Streets in Streeterville, and very close to the Navy Pier. If anyone has any leads, please let us know.
Also, besides their own airline tickets, they are flying Kristi to and from Chicago and putting her up in a hotel …so if anyone has transferrable airline tickets or hotel accommodations you won’t be using, please consider giving them to Angel and Lee.
Thank you so much for helping this extraordinary family in any way you can!
- James Cargnoni
- Tumbry Ron and Rachel
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