I'll begin with a few pics!
This is from today's visit. We are at MUSC for our one year appointment. Getting a bone marrow biopsy, checking things out there as well as in his heart; getting an echo and EKG.
The fair! We actually were able to go this year!
South Carolina flooding.
Ok. It's been an ungodly amount of time since I've updated the world about my son's health. I think it's in part because the less I associate myself with anything related to his sickness, the more normal I feel.
Carter has been doing absolutely wonderful. We were admitted for his BMT October of 2014. I still remember how it felt. It was like I was just floating. I had no control of what would be the outcome. Had no idea if my child would even survive this life threatening procedure. Sure I got by on faith, but at the end of the day, that's all I had. A hope and a beg that he would pull through. It's been a scary year. One filled with triumph and victory, but also pain and struggle. I am in shock when I realize just what we've gone through over the past few years. The transplant. The nights I laid next to him in bed crying with him because we didn't understand why life was so unfair. All the ways I tried to encourage and strengthen him. The times I wanted to get away to cry but had to be the brave face. I've learned just how strong we all are. Especially when we are fighting for love. The chemo. The radiation. The meds and meds and meds. The line. All the nights we had to take a press and seal bath. I know I'm rambling, but, you can't even begin to imagine all that this boy has come through and pushed through.
He's been rehospitalized more than I can count. He's had sepsis and been in the ICU, had ecoli, and just about everything in between. He had about five times where for some reason, he would be sick with constant diarrhea and vomiting until he got so dehydrated I would have to drive to the ER and carry his limp 60lb body all over creation. Then we would be hospitalized for at least two days. Life has certainly been. . A challenge. A beautiful, gut-wrenching challenge.
Everything seems to have leveled out in our lives. He hasn't been seriously sick in a while and the times he's gotten sick (puke) we've been able to contain. He's started playing basketball and is doing great. 4th grade has been tough, but he's not missed very much time at all. We aren't afraid of public places anymore and I ran out of sanitizer in my purse. The chains have loosened a little.
I can't say how much the prayers, friends visits, messages, etc. have helped. My world has been turned upside down and I love so much the people that choose to walk with me.
Our future looks really hopeful. Carter's BMT has essentially cured the marrow failure caused by his FA. We will need to monitor his health for signs of issues with the transplant or cancer as FA can cause this. With Carter's strong will and healthy, active lifestyle, we hope we can make it through any obstacle.
Carter probably would not be alive today or have a future were it not for the donated umbilical cord blood that was given him. Please bank your baby's umbilical cord blood and consider joining the bone marrow registry. You won't just make a difference. You'll make a life.