Meet Carter

Feb. 26, 2008 - We had a small celebration for Carter’s one week at home this evening.His doc appointment yesterday was another success, in which the Dr. Giller was once again happy with his progress. Destiny also joined us on Monday and he was excited (maybe too excited) to meet her. She is so calm and so loving, we too are also excited to have her on board. With all the care we have to do each day she is so prepared to help us out. We are learning that having Carter home is like bringing him home from when he is born. We have to teach him how to enjoy solid food again, as well as (and most importantly), enjoy his Crib. Plus he wants to be held 24/7 and that really hurts the amount of sleep we are getting. Hence the reason I’m writing this blog at this time, we have to give him medicine every 8 hours and I’m up to give it to him. Which means that he will probably be up every hour on the hour the rest of the night, but Oh, Well, what can you do? He’s home and we are loving it!

Okay it’s been a good 72 hours since Carter left the BMT ward and well it has been fantastic to be home. It’s almost impossible to express how much a relief it is to be home, but at the same time, I think you can all imagine how scary it is as well, especially after spending 42 days in the hospital. We kind of have to get used to being in our humble abode. Carter especially has a lot of adjusting to do. He has been pampered 24/7 head to toe for all these days he kinda thinks he wears the pants in the family right now (which he does). The steroid treatment doesn’t help much, he takes about 6 one hour naps through the night, the rest of the time he keeps mom and dad running between the crib and bedroom until we just put him in the bed.

We had his first out patient visit on Friday and it was very good. All his blood levels (white blood count, hemoglobin, ANC levels) were all up and we found out some tremendous news from his Bone Marrow Test he had done. He has grafted 100% donor marrow, which means all his old defective bone marrow is gone. This is great news for Carter, and would also explain his Host Vs. Graph syndrome he is experiencing.

The Brotherton family is also so very excited to announce a (part-time) addition to our family, Destiny Jara. Destiny is a Child Life Specialist at National Jewish Hospital and will be helping care for little Carter a couple of times a week. She comes to us with an amazing resume that includes a lot of volunteer work in the BMT ward at Children’s and glowing recommendations from many nurses and PAs at Children’s. It was almost like “Destiny” for us to get so lucky and get Destiny to help us out. She seems like a very special person and we can’t wait for you all to meet her.

t was 63 degrees today and probably one of the nicest days of winter…everyone had their spring fever hats on and we were sitting in a small 10′ x 20′ room wondering was this the day. It was almost like the sun came out, the sky was blue and the day was perfect. Just like Ice Cube said “Today was a good day!” The crew in the 7 West BMT Ward had enough of the Brotherton family and were sending us home! Carter was feeling good/looking good and Deni and I were exceeding the maximum limit of time in the “brig”. So despite the fact that Carter was still on IV steroids they were comfortable enough with us to send us home!

42 days/41 nights is, well, a loooong time! BUT WHO CARES…Our boy is finally home! Yea, that’s right, I am writing to you from the comfort of my own couch with the knowledge that my son is just two rooms away from me sleeping (for now) in his own bed. If I could only tell you how awesome a feeling that is (I guess I just did) to say that we have made the next positive step in Carter’s progress is almost scary. I mean I’m not going to lie, we have been living at the hospital with probably the best 24/7 care we could ask for and when they tell you it’s time to go, you are kinda like, “Are you coming with us?” But believe me we couldn’t be happier to be at home. The last couple of weeks of extended time in the brig have been really tiring. And it’s almost sureal that we are home. I mean the last time we were all home, the Giants were the underdogs of the East, the Patriots were unbeatable, Mitt Romney had a chance and Hilary and Obama were bickering like 6th grade 1st crush loves ( I don’t know what that means). I just can’t believe how long a stay we had, but I was quickly reminded that we are lucky (in a way) at how long we were there when I met a nice couple on the Oncology floor today as were leaving who have been at the hospital since Oct. 7th. We have learned so much from the staff, the parents, the children that “live” on this floor and once again I remind you all of the courage, sacrifice and inspiration that breathes on this floor it’s truly makes you count your blessings, because no matter how dire your situation is, and how sorry you feel, that there are so many others that are faced with more “critical” situations.

Enjoy some pictures from Carter’s Last day! …

First of all I would like to wish you all a very Happy Valentine’s Day, although I tend to believe this is one of those “Capitalistic” like holidays, it has a special meaning in our family. It is also my sister Kristi’s b-day. So I would like to say Happy Birthday Sis! You are one very special person. You are an amazing mother of 4 beautiful girls, you are an amazing wife, you are an amazing daughter, but best of all you are an amazing sister! I love you very much and I hope you know how proud I am of you and how much I look up to you. Thank you so much for your strength and guidance!

I hope you all had a chance to reach out to your special “Valentine” today, and don’t worry if you forgot, when you wake up on the couch tomorrow get up early and make them breakfast and give them a big kiss that should get through to next year!

CARTER UPDATE: We have been in the hospital for officially 38 days and are coming up on his 1 month “birthday” of Feb. 17th which most of you know is 1 month Post Bone Marrow Transplant (PBMT). Carter has been doing well the past couple of days and the docs are trying once again to prepare him for a departure date of Monday IF all goes well over the weekend. WE HAVE OUR FINGERS CROSSED!

Thanks again for your continued thoughts and prayers!

Well, I’m sorry to all for the delay in updating you all, I was hoping to announce to you all in my most recent post that Carter was home and we were so excited, and our dog was so happy to have him home, etc….  But unfortunately we are still here and we learned to today that we will probably be here for a few more days, because Carter just is not quite ready to come home. Obviously this has been quite draining on Deni, myself and my family but at the same time it is so critical to Carter’s health and well being that he is 100% ready to hit the road when he and his new custom cells are ready. What we are facing right now is classic Host Vs. Graph (HVG) syndrome. This means that his new donor cells are a little pissed off because they are in a new home and are trying to find out why (it’s kinda like when you moved as a kid and you were so upset because you had to go out and make new friends and since you were so upset, you started your new neighbor’s house on fire and beat up the kid on the end of the block). So all his new cells are causing quite a rash and also occasional swelling. This is a minor reaction and has been rated a 1 out of 4 on the severity of HVG syndrome. So how they treat this is continuing steroid IV treatment and upping his anti-rejection medicine.  Deni and I are calmly excepting his delay because we are obviously want what’s best for Carter, but we’re not going to lie, we wish we could take him home. The hospital tends to suck the life blood out of you after a while.  Carter also went through a pretty significant procedure today in which they had to put him under for about 30 min.  What they did was stick a needle in his hip and draw bone marrow from it to test how well the new marrow cells are taking. They expect that he will be at about 90% new marrow cells and 10% his old cells with this test, we have our fingers crossed as we will not know the results of this test for about a week.

Sorry I have been so lethargic with the blog lately we have been pretty taxed by the past weeks events.  Hope that you are all doing well.

P.S. - Channel 9 should be airing the spot on Carter sometime this week, I will let you all know when it is when we know.

Well, you know what they say sometimes…. “Don’t get your hopes up!” Well we had our bags packed, our house cleaned top to bottom, our cars detailed and our feet out the door, when at the last minute Carter decided that he wasn’t quite ready to go home. Around 12pm today he started to run a mild fever and started to break out in that darn engraphment rash again. This concerned the Docs enough to decide to be better safe than sorry and well, we’re staying put for at least one more night. As the night has gone by his rash has been accompanied by some slight swelling in his feet and hands, and this was enough to put him on some IV steroids again (Dang!) So, we are really cautiously optimistic that we will be going home tomorrow (double Dang!)Our hopes are not “down” but just “steady” for now! Because in reality he has been doing a lot more smiling and laughing and the Docs think he is just having a little HVG (Host Vs. Graph) problems, which means that due to his low levels of white blood cells the new bone marrow cells are taking over. this is good, as long as it is controlled with medicine. He takes two different HVG medicines Cyclosporine & MMF. They decided to up the Cyclosporine doses a bit because it was a little low. It is amazing how the docs and nurses here at Children’s are always on the ball and are ready for anything and we are really appreciative at how cautious they were in letting us go home. There was no pressure to push us out the door, and they had Carter’s health in mind the entire time. Thanks again to all the staff here you are all great!

On another note, Channel 9 is doing a piece on Carter tomorrow here at the hospital so you all will have to keep an eye out it tomorrow evening. Once I find out when it will air I will let you all know through the Site.

Benefit update: We are still calculating all the donations our benefit raised, due to some credit card problems, but we will let you all know as soon as we find out and look for my Thank You page coming through, there are so many people to thank and I promised I would thank each and everyone of you and the only way I could do it was to put together an entire page.

But I would like to say a very special thank you to my Mom, thanks for helping us out the last few days while we dealt with the “situation” it has been hard on us and the last thing we should have to be dealing with at this time, but with your support and love we are doing fine! I LOVE YOU!

An interesting quote that caught my eye “Hate is Easy; Love Takes Courage” - unknown

For most of you who may have missed the Post Super Bowl Fox 31 News segment you can view Little Carter’s story here:

Fox 31 Little Carter News Story

WOW! … let me say that again…WOW! We are still so unbelievably blown away at the amazing turn out for yesterday’s 1st Annual Carter Brotherton/MPS Society Super Big Benefit. It was so wonderful to see so many people having so much fun. The room was filled with an energy that you could almost feel running through you at times. I wasn’t sure where it was coming from, but as I stopped and took a moment to look around I saw complete strangers sharing table space talking like they knew each other for years, I saw old friends catching up over the last 10 years, I saw family and friends diligently working hard at selling raffle tickets and helping with silent auction, I saw old & current co-workers hanging out with my good friends and BANG! it hit me…the room was filled with love! I then broke down in tears of true joy! I realized that all these people with hearts the size of basketballs weren’t just there for Carter & The MPS Society (All though this be the main reason they came) they were also there for Deni and I. I have to say that I have never felt so loved. What you all did last night was nothing short of a miracle, if I could express to you in words how much joy you brought to our family,I would, but I can’t! Believe me I’ve been speechless all day. The only thing I can say is…and I’ll speak on behalf of Carter & Deni…is WE LOVE YOU TOO! To all my friends, old and new, WE LOVE YOU! To all the strangers that I met last night, who are now life long friends, We LOVE YOU! To all my co-workers, old and new, We LOVE YOU! To our family…We LOVE YOU! Which brings me to a little side note…while going through this dramatic life event you really learn how important family is. They pick you up when you are down, they UNSELFISHLY commit themselves to help you when you need it the most, they come out and SUPPORT you at major events because they know it’s a special day for you, they tell you they are proud of you and they do all this with out needing PRAISE at every step because they know how thankful you are for their sacrifices, but we would like to say “thank you” if we haven’t done it recently. (We would especially like to thank Deni’s cousins Pete & Alice Donley, we really appreciate you coming out from Kansas to help watch Carter and contribute to our silent auction with great gift baskets and of course the puppy, you are special people)   … and when I think about it, this event reflects on how special a family you are and I hope you felt as loved as we did!

So, many of you have wondered how much money did you all raise last night…we are still calculating the #’s but at last count we raised just over $20,000 which bring me back to WOW! That is unbelievable and to let you know if you didn’t already Deni and I are donating 30% to the MPS Society and for all of you that bought a silent auction item or gave us a donation check we will have the MPS Society send you a receipt.

NOW FOR EVEN BETTER NEWS!!!!!!!!!!! We were treated to the wonderful news this morning that Carter has continued to increase his white blood cell level and is maybe set to go HOME on either Thursday of THIS WEEK or Monday or Tuesday of next week if all goes well!!!!! He will continue to visit the hospital every other day, but going HOME is a huge step in this long process. Once again we owe you all a huge thank you for all your Love, prayers and positive thoughts that energy has found our Little Warrior and he is thriving on it!

Godbless & Goodnight!

LOVE,

Deni, Trent & Carter