Friday, June 20, 2014


So I had kind of been going back and forth since January when we initially got the diagnosis on whether or not I wanted to fully accept this thing. It's funny how parts of me think I can just ignore everything and it will somehow feel better or go away. And it does make it feel better to not think about doctors and conditions, etc. But it doesn't really solve anything.

I would go to the website to research FA, but get sad and leave. Think about doing fundraisers, get sad, leave. This is the repeat pattern of life lately. I guess it's part of accepting something you can't change.

Well, I recently decided to join the online family support group and was added to a facebook group. They call themselves your FAmily. I had no clue there was so much support to be had. Since I posted my initial post on the site, "Hey I'm Jessie. My son Carter was just diagnosed, blah blah blah," I've gotten like 30 responses of people sharing their stories and giving me encouragement. I've also gotten several friend requests and actually had a very sweet woman in NC give me a phone call and talk to me giving me advice like she was my own mother. I can't believe how supportive they are. I've also seen so much cool stuff about camps and other things to do for the kids.

I'm letting Carter in a little bit at a time. He doesn't seem to be really aware of his condition, or he just doesn't care right now. He's not really bothered by anything, other than being careful not to bump his head. Or he will alert me if he's bleeding/if one of his friends knocks one of his teeth out. That sounds bad, but they were two loose front ones. Totally normal.

I made him a little brochure. Yes I have free time. And it explains a little about DNA because I want him to be smart. I even talk about copying  errors. So. He of course took one look at it and put it down. Why does my son refuse literature?


The life of a poetic mother who wants her seven year old athlete son to love the arts.

Well anyway, his spirits are high and that's what matters. He's not sad or scared or anything of that nature. So I'm feeling good about that.

One update is that I am in the process of getting a consult with the Cincinnati Children's Hospital as they are one of three in the country who specialize in treating FA patients. While I LOVE the staff and our doctor at MUSC, I just want to make sure we are COMPLETELY covered in knowledge and expertise. The doctor will look at his records, let me know if insurance will cover our visit, and then we will be off. Possibly. I also found out there is a network of retired pilots that will fly you across the country for free if you need to go to a hospital. Pretty cool. Even though I'm not sure I want my first flight to be in a tiny airplane.

Monday, June 9, 2014

Since January - What's Up With Carter?

Ok. So the purpose of this blog is to keep friends and family updated on what's going on with Carter man and also for him to be able to use as an online diary to sort of blog through his life experiences.. We will see if he wants to do that. I'm trying to be proactive with the ideas of ways to stay busy in the hospital!

So much has changed since January.

January of 2014, Carter wasn't feeling great. He had been sick with a regular bug and had a low grade fever that persisted for a few weeks. One night at mom's house, I noticed he had a strange rash all over his body. (This is unlike Carter because he never gets rashes). Took him to his pediatrician the next day and they deemed it a virus. After checking him for the flu, various viruses, strep, etc.. we were told to just wait it out and that it was just a virus leaving his body. He was also playing flag football around this time so his body was under a good bit of stress, running around in the cold.

After practice a few nights he would complain of joint pain. I sort of pushed it off as just being from football, but one night after his shower, he could hardly walk and was crying trying to come to eat dinner. I decided to take him to Nason Medical Center down the street.

We went in, did the regular tests, flu, strep- nothing. He was negative for everything, but complaining of joint pain and still had the fever/rash. The doctor wanted to run some blood work just to check. He said if it were his child he would want to have that done just to be on the safe side. A few needle sticks, and minutes later, came the words and the furrowed brow/gentle tone, "His blood counts are really low. I wasn't expecting this, but.. I think you need to be admitted to MUSC Children's Hospital."

Wondering what it could be like a typical worry stricken mother I asked and was told Leukemia was a possibility. My grandpa has had Leukemia off and on for most of his life, so I naturally, expected the worst, but put a brave face on and drove downtown.

Carter was admitted and stayed at MUSC for ten days. He had various tests run (many!) had blood taken daily (poor thing). I have to take a moment to brag and say that Carter absolutely has no problems with being worked on. He didn't fuss, or wiggle, he just took it. Grown man status.

Anyways, he had a bone marrow biopsy done. That was fun. Again he did fine. Mom did not. He had a piece of his skin removed to have it biopsied, to which we were told it looked like it came from a virus. He has a nifty scar on his thigh from this. We met many nice doctors. They thought he might have juvenile arthritis among other things, and they continued to search.

Each morning we would expect the doctors to tell us why he wasn't getting better. They didn't have a definitive answer. Tests came back negative. Carter kept a fever. He had to have blood transfusions which agitated his rash since he had some sort of leaky vein thing going on. He looked a wreck. We felt a wreck. We really just wanted to know what was going on with our boy. 10 days later, no one knew still. The results of his bone marrow biopsy showed no cancer or leukemia, but also didn't look completely right.

We were allowed to leave after 10 days since his fever left him. However we still had to go back to the hospital to have his blood levels monitored. Finally, a test result came in. A chromosome breakage test had indicated he might have a genetic condition called Fanconi Anemia. Several agonizing weeks later, his genetic results came back and confirmed that my recessed trait, plus my husband's recessed trait, equaled one dominant trait for Fanconi Anemia in our otherwise perfectly healthy boy.

31 children get this diagnosis each year. I think our doctor said Carter is one of 3 (?) In our state with this. We knew he was special, but ...

Fanconi Anemia is an inherited anemia that leads to bone marrow failure. It is a blood disease that can also effect other areas of the body. We have been SO blessed in that Carter doesn't show many of the other abnormalities that can accompany FA. After a patient with Fanconi Anemia has had a bone marrow transplant, they are still very susceptible to cancer and have to be extra diligent in their preventative care.

This diagnosis has impacted Carter because he is currently not allowed to play any contact sports and can also get hurt seriously if he gets hit in the head. His platelet counts have remained low and bleeding is a concern.

However, other than that, our family continues to truck along. We have been told that in the next one to two years, Carter will need to have a bone marrow transplant. His will be given from umbilical cord stem cells since he wasn't able to be matched in the donor database.

We are adopting a philosophy of trusting God for the day to day. Living in the moment. Being thankful, strong, resilient and brave. We are dealing with much less than many have to deal with in this life.

As Carter's mom, I want to encourage him to live his life normally as much as possible. So if any of our friends and family are reading this, we would appreciate if you can do the same. Don't treat him any different, other than being mentally aware of his condition. We don't want him to feel like he is any different than anyone else. We are so blessed by your support in this area.

This is a whole new chapter of our lives. Completely swamped with new information, goals, worries, fears, and needs. But, we are here, we are trusting, and we have great family and friends!

If we could ask for your help in any way, it would be for you to...

  • Sign up to join the national bone marrow donor registry. I've done it myself. It is simple and easy and free. All you do is send off for the kit and swab your cheek! There is never a cost to you and you could be the life saving donor of someone else's baby. In some cases, a successful bone marrow transplant can help to restore a child's health and almost cure them of their disease!

  • Also, within the next one to two years, Carter will be experiencing a difficult time as he undergoes his transplant. He will have to be in the hospital for 6 weeks and then stay out of school for 9 months as his immune system recovers. He, as well as I and his dad, will need love, support, and encouragement from family and friends! I'm a little worried about us two social butterflies as we are isolated alone together for so long! :) Any ideas of ways to pass time/visits when possible/phone calls/skype sessions will be greatly appreciated in this time! We plan on getting another lap top for our use while there.

  • Be a source of encouragement for Carter. We need teammates and coaches as we travel along this new path!

With love!

Jessie - Carter's mom.