Day +375 ONE YEAR UPDATE

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.

 Smile!

The fair! We actually were able to go this year!

Halloween. 

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. 

Day 229

 

WOW!!!

Did I read that right? 229? I can't believe it's been so long since my last update. I am ashamed.

 

A lot has been happening with Carter since my last update. I started writing a very long and drawn out version of what happened, but I'll try to keep it short.

 

I believe I updated everyone when Carter got food poisoning.

We had two other instances where Carter had to be hospitalized for about a week each due to diarrhea and vomiting.

 

The first time was the worst. He was very dehydrated by the time I got him in and had somehow gone into septic shock. His BP dropped, he had a fever and they admitted him to the ICU. Worst. Moment. Ever. His doctor looked at me and said, "he's really sick. This is one of the life threatening complications that can follow transplant." Let's just say I was praying in ways I didn't know I could pray.

 

I learned a valuable lesson that night in the ICU. It's not over until it's over. You can't live in defeat or the fear of defeat when the battle is still underway or else you kill yourself. As I prayed I felt like I needed to just support him and not give up on him. Thank God he pulled through and was doing better by the next morning. They had to give him a special epi-type medicine to boost his BP while in the ICU. To give him this med they had to start an IV in his wrist and do two stitches to hold it in place. Carter was an absolute champ that whole time.

 

The next time we were hospitalized, which was sadly like two days later, it was for pretty much the same thing. They did a scope and colonoscopy and found out that Carter has a lovely colon and stomach, but had irritation near the bottom of his esophagus that is consistent with reflux. The doc thinks his stomach was still very sensitive after his food poisoning and that caused him to react to bacteria he might have ingested from week old watermelon, one boiled peanut, or a pasta dish.

 

We had to start watching better what he ate. It's been a few weeks since then and we haven't had any episodes. Fingers crossed. The cool thing is that his biopsies they did during the scope and colonoscopy showed no graft vs host. So we continue to dodge that bullet. Counts continue to be good and I'm happy to report that not only is he scheduled to have his line taken out this Thursday but he will also be attending summer camp next week. He also turns 9 on the 29th.

 

Things are going great. Carter continues enjoying playing Minecraft, basketball, and UNO. We are really excited for him to be able to start swimming again soon.

 

Happy summer!

 

Day +192

After getting a good report from our doctor, Carter was able to go to school and play kickball with his class. His Tcell count was high enough that she felt he would be ok around the class as long as no one was sick. I'm not really sure what the Tcells mean, but I do know they are indicative of a working immune system. His class won the kickball tournament! He was stoked. It was great for him to be normal again. A lot of the kids were confused about his appearance. He looks a lot different. But don't worry about his confidence. He is very full of himself and composed a song entitled "I Be Sexy", which listed all the ways he was sexy in his daily life. .

Carter is on 0.3 for his dose of cyclosporine. Tomorrow he goes down to 0.2. When he finishes that medicine he gets to begin the process of getting his broviac line out of his chest. Which will be great because he can go swimming!

He's going to go to camp this summer. It's a week long and he will be without us.  I think he's going to have a great time and learn a lot from the other kids. They are having a talent show and he asked if he could learn a Michael Jackson dance for his talent. We are still working on that. Motherhood took a large amount of my rhythm and dance ability.

Overall, we are trying to rest, have fun, and enjoy our time together. You never know what tomorrow will hold. You've gotta love your family like there is no tomorrow!

<3

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:

http://fanconi.org/index.php/donate

Jungle man. 

I adore him in that hat. 

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

http://miamiherald.typepad.com/umiami/2015/04/remember-carter-hucks-hes-visiting-duke-johnson-today-for-nfl-draft-.html

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. 

<3

We love you Florida!

Carter Pics. Day +136

Hello all! Just wanted to post a few pics of Carter so everyone can see how he is doing. Thankfully everything seems to be trucking along with no complications. Thank God.

Hanging out with his pal. 

No words needed for this. I was spotted with the camera I guess. 

Racing. Why with no shoes, I don't know. And I just noticed neither of them have matching socks on. Ha!

Boys on the block. Gotta love it. 

Carter looks a lot different these days. He's about ten pounds heavier but still as active as ever. He loves playing basketball and just being with his friends. He's changed a lot through this whole ordeal, but I feel like it's been for the better. He's a lot more mature, he's also gained a lot of confidence and is learning about what's important in life. Friends, family, God, and enjoying your life!

Day +125

WOW! It's been forever since I've done a post. I made Carter stop long enough to take a recent pic for this update.Thankfully, not much has changed with Carter, except that he continues to thrive. I feel so outrageously blessed with how he's progressed. Not every family has been this lucky with transplant and we continue to try to enjoy each day he's blessed with good health. He looks a lot different these days. His hair is coming back, but he's also getting a lot of new hair in new places as you can see from the picture above.

Now for the technical stuff. His marrow is working great and all of his counts are at a normal level. It's amazing that he has platelets now so if I accidentally hit him in the head with a basketball pass, I don't have to worry about him getting hurt worse than superficially. Phew! The new marrow has engrafted and Carter was at 90(something)% donor last time we checked. All of his levels are going back to normal. He is taking an antibiotic every night through his line which you can see in the pic above. That little white thing under his shirt is his dressing that covers it. He gets an antibiotic as well as fluids throughout the night. He also takes meds three times a day. He does great with everything, but about once a month he will get a little upset about having to go to the doctor, be sick, etc. I always try to remind him that even though things are a little different for us these days, he is on the road to recovery and hopefully by summer will be living almost normally. 

The next milestone for us is day +180. At that point they will start to wean him off of some of his meds to see how well his body will function and accept things by themselves. From there they will walk him back up to a normal immune system and eventually start giving him his immunizations again. He is allowed right now to be around friends and family as long as no one is sick. We've gone to waffle house, and he's gone on a few brief outings here and there. Taking care of a post BMT kid is a balance between keeping them safe and keeping them sane. No kid wants to feel like they are different than the others. 

Carter has been spending a lot of time reading and playing basketball. Though he informed me that his favorite sport and his dream is still to play football. He also has been playing a lot of super smash brothers, hanging out with friends and family, and playing with his legos. Thanks to everyone who has reached out and continues to send love and prayers to our family as we walk through this crazy journey! We have met a few families at the hospital that are post BMT and it's been great to share experiences with them as well as offer them encouragement. For now we just try to live every day as normal as possible and enjoy the heck out of all the good reports we've been getting. 

Day 75

Not a whole lot has changed as we keep moving forward. Carter has been doing his school at home and reading lots of books. We've also been going to parks at off times and visiting family. He's had some buddies over, which has made life feel more normal. We are going to the doctor two times a week now. Carter is off of the steroids so we are hoping he loses some of his squirrel cheeks and starts to look more like Carter. His appearance has changed so much over the past few months. He's got hair. .everywhere. His counts all look terrific! Much higher than they've been over the last year. We are monitoring a rash that the doctors think might be eczema. All things considered, he is doing great and in good spirits. Thanks to everyone for the continued love and support!