Monday, May 4, 2015

Day 179

I'm always so disappointed with myself when I see how long it has been since Carter's last update. However, with all that went on this weekend as well as all that's planned for today, I think today is as good a day as any to give an update! 

First, what we have going on today..
Today is Carter's visit for his day 180. He has been weaning off of his cyclosporine, the main, important, immunosuppressive medicine that he has been taking since his transplant. His least favorite because it tastes disgusting. It's also the reason he needs other meds for his blood pressure and heartburn, etc. So, we are down to 0.4 ml from 0.8 and we are all excited about him being done with so much medication. 

Today he will get another bone marrow biopsy, an ECHO and an EKG. Those will basically check his heart function I believe. So far he's passed every test with flying colors and I hope to see the same today. 

A milestone of day 180 is supposed to be that you are allowed to resume semi-normal activities like school, so we will see how his doctor feels. We still haven't done any immune system studies to see how his is functioning and though he seems to be healing well, all counts have been up and in healthy range for months, his docs are careful. Which I can appreciate. 

We tried to go swimming this weekend with his broviac line covered in tape. Needless to say that didn't work. I don't know how much swimming he will be doing until he gets that lovely thing out. Hopefully it can go soon. 

I think the next steps for his treatment are to see how he looks today, continue to wean him off his medicine, so far he has had NO adverse reactions or signs of graft vs. host that we can tell. However, he did get food poisoning about two weeks ago and was very concerned about why someone would want to poison him. 

Other than that, he has been FULL SPEED AHEAD. Taking standardized tests, reading Hardy Boys Books, Watching Stampy Long Head videos on Youtube and building awesome Minecraft houses. He also loves playing basketball. (Side note: He had to "kill" one of his cats on Minecraft for some reason and I came in to find him building him a masterful grave complete with a tombstone, cross, and flowers. So his morals are developing as well!)

Now, on to this weekend. 
We were blessed enough by the wonderful Mitchell family to be invited to experience this weekend with Carter's favorite UM player, Duke Johnson. 

We got to meet and spend time with him and his family, watch the draft and be there to share his special moment, and Carter and I also watched our first fight while there. 

It was an amazing weekend and I can't thank Cassandra and the rest of the family as well as Duke for letting us be a part of their family too. They really are some of the best people you could meet and we are so happy for Duke! 

I'll post some pics of that side of the weekend when they become available, but for now, here are a few of us enjoying a lovely trail and Jensen Beach. Derrick is really ready to move to Florida after seeing that blue water! I need a little more convincing before I leave my mommy. I don't care how that sounds.

<3 Thanks everyone for the continued prayers, love and support. 
I noticed on Google that those who searched for Carter also searched for Fanconi Anemia. So thank you to all who have helped to bring awareness to this condition and sought to provide help and care. 

If you'd like to donate to help research a cure you can do so here:

Jungle man. 

I adore him in that hat. 

Side note. A recent article came out about our weekend here: 

Guess I should have posted that earlier, so consider yourself a TRUE Carter fan if you're still reading, so you get the good stuff. 

Anyways, they posted a pic of my baby looking rough from his pre-sexy-up-haircut days. I'd like you to refer to the above picture that was taken Saturday for what Carter TRULY looks like now. 

We love you Florida!


  1. So wonderful to read about the great progress medically Carter has been making.

  2. Thumbs up to you. Well written and well described with wonderful pics.
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