I just want to share a few things with you that I am thankful for this year. We are currently in the hospital with my oldest daughter, age 7, who is having some complications with her bone marrow transplant. We have been through a long journey starting with my youngest, age 5, getting a transplant last summer. Both girls have an immune deficiency that will hopefully be cured by the transplant. I have really gained a greater appreciation of everything through all this, and I want to share a little with you all. I originally posted this on a website for sick people called CarePages, so the format may seem a little odd, but there are space and style limitations on the site. I'm just too tired and lazy to do much more than copy and paste.
Thanksgiving 2006, Edition 1
As McKenna lay in misery here while we were unsure of what was making her sick, I was thinking of a little girl who got transplanted this summer with McKenna, “Susie” will be the name we use. Susie was going through her second attempt at transplant. The first one ended in engraftment failure. The second one was going quite well, until she told her mom and dad one day at the Ronald McDonald House that she “just didn’t feel right.” They brought her over, and her condition worsened. She had a blood infection, and she didn’t make it. I will be remembering her and her family this Thanksgiving as well as Jeremiah, Tyler, and Matthew (These are all little ones we have met through our journey who are no longer with us. They fought the good fight.) as well as their families. I will say a prayer for them and be thankful that I am in the hospital still with my babies.
Jeremiah was a young boy who had lots of health problems- heart condition, Down's Syndrome, and eventually lukemia. His mom was a single mom with a couple of other kids. Mom lost her job at GM as soon as they found out she had a sick kid and would be missing a lot of work. His transplant was a last attempt to save this boy. After several months of struggle, Jeremiah just couldn't fight any more.
Matthew was a very special little guy here on the floor. He had a rare form of lukemia. He was a huge Steelers fan. He was here with his grandma and grandpa because when his mom and dad found out he was sick, they "had a life of their own to live." Grandma and grandpa (a Vietnam vet)got custody of Matthew and took him as far through his journey as they could. He was supposed to go to training camp with the Steelers this fall, but he didn't get to. Shortly after his transplant the lukemia came back stronger than ever. He ended his fight earlier this fall.
Luke was born last spring. He had some issues at birth, and some of the tests were worrisome. He was in the hospital longer than usual. His parents finally got to take their new baby home, but within hours his condition deteriorated. He was home with his parents for four hours before returning to the hospital. They were then sent to Cincinnati via air ambulance, where they have been ever since. Their baby is almost 6 months old, and they have been able to be home with him for a total of four hours. In addition to the worry about his health, they have to worry about their jobs being gone when they go home(they are now unemployed), their mortgage, their insurance (it’s gone by the way), wading through the mountains of paperwork associated with paying for healthcare when you are uninsured and unemployed(especially when you have lived in another state your whole life, then have to file for Medicaid in a state where you have no permanent address other than a hospital room), and all the other things we worry about on a daily basis (Like Dad being a Yankee fan and Mom being a Red Sox fan!!!!!). Still, I am sure if you ask them, this will be a great Thanksgiving because they have Luke and each other.
I am thankful for:
First and foremost, I am thankful that Sydney has done very well through her transplant, and McKenna is now feeling like her old self again. I am actually thankful McKenna probably has a little bit of GVH (Graft Versus Host Disease) for a couple of reasons. One, it means her wonderful donor’s cells (we are also very thankful for our donors) are doing their thing to make my baby healthy. I am also thankful for GVH because it is not a blood infection. (See Susie's story above)
Our wonderful friends and family who have supported us through all of this and continue to do so.
The super doctors, nurses and support staff here at Cincinnati who do amazing work everyday.
The People Powered Prayer Posse (PPPP) who allow me to show of my alliteration skills, and who do such good work keeping my girls in good standing with the Power(S) That Be.
A world class hospital with a world renowned reputation practically in my backyard, so I only have to drive a couple of hours instead of totally relocating.
My wonderful kids.
Waking up next to the bestest wife in the world everyday.
Turkey
GRAVY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Football
World Champion St. Louis Cardinals!
A great job that has a sick leave bank so I can take care of my kids through this while on paid leave.
All the blessings that have ever been bestowed upon me- believe me I am pretty darn lucky.
A warm and stable home I know I will get to go home to soon.
Someone who thinks enough about other people to have a Thanksgiving meal catered to the families who are stuck here for the holiday.
And finally, about a trillion other things I used to take for granted everyday.
The last thing I am thankful for is the resilient human spirit. I am amazed everyday by the fact that the people I see here are going through most people’s worst nightmare as a parent, but they are usually upbeat and smiling when you see them. They are some of the easiest to laugh, and I bet they have a deeper appreciation for what my hero, Mr. Lincoln, had in mind when he made Thanksgiving a national holiday. AMAZING!