Meet Carter

But we are definitely on one heck of a roller coaster ride. Carter progress had hit what seemed like a little bit of detour. With all the stress his little body was under with the Chemo, the eye hemorrhage, the rash, the five different antibiotics, four different mouth and stomach care medicines, the nausea and stomach cramps, oh and the fact that he has basically no immune system he finally hit bottom on early Tuesday morning where he broke out in a fever, had a very high respiratory and heart rate  and swelled up and scared the hell out of dad. When the resident had to call Dr. Giller at 3am to see what they should do I was concerned. Yea, I was concerned because I knew from watching all those stupid medical dramas on TV, when the young inexperienced Resident has to make a call to the head doc (in this case the head of the Oncology/BMT department), at that time in the morning, then things were not looking good!  Dr. Giller was prepared as always and made a great decision to put him on IV steroids (Insert Barry Bonds joke here: What does Carter Brotherton have in common with Barry Bonds, Roger Clemens, Jose Canseco, and every other current MLB player?) to help reduce the swelling and rash that had become so bothersome. From that point he has steadily improved over the past few days. Along with the IV steroid we started using a topical steroid (1 for his body, 1 for his head/face) which has helped tons with his rash. They have also increased his diuretics  which help go pee… this helps him reduce the swelling as well and help reduce the risk of hypertension. So, you can imagine how this type of roller coaster ride can be a little taxing on our family, but we are hanging in there. IT is great once again to see Carter starting to act a little bit more like Carter today, Dr. Giller said he was happy to see him responding to the steroid treatment so well that he is going to back him off the amount he gets tomorrow…I guess now would be a good time to see if Carter can throw a 100 mph fastball!

On another note…. I need to give a LOUD Shout OUT and THANK YOU to Pete Gonzales down in Houston. Pete is a co-worker of mine and now a life-long friend. He and a few of his friends threw a big party in Houston with all proceeds going to the Carter Benefit Fund and National MPS Society. The party of more than 300 people raised around $2500!  Pete our family cannot thank you enough and if you were near I would give you the biggest bear hug a man can give another man! People like you and your friends are special people that mean a lot to this world. God bless you!

More thanks need to go out to my two new favorite radio stations… 101.5FM The Martini and Sassy 107.3FM. Rhonda and Regina I want to thank you so much for all the promotions you have been doing for Carter’s upcoming benefit on Sunday @ Jackson’s. I was literally in tears when I heard the promo on Sassy, although I wasn’t sure if it was the promo or the Lionel Richie/Diana Ross Duet of Endless Love that played right before it (I tried to sing…not so good!)

Speaking of the Benefit… We are so, so, so thankful of everyone that has helped us out with this. But we need to especially thank Jen Cuddie! You are AWESOME!  You have taken what was supposed to be a small little party with a few auction items that has grown to a big party with more than 130 auction and raffle items all on your own. Simply said, we would not have been able to pull this off with out your help! We still don’t know how we can repay you for all your help with this event, but we will even if it means that I wash your car, mow your lawn, do your dishes for a whole year I will!

Also thank you to Tyann, Angie, Kate, my Sis, Hailey and Jana for helping out at the Benefit your help to make this happen has been great and really we can’t thank you enough!

January 27, 2008 - It’s hard to believe that we have been in this room for 20 days now. We are officially on day 10 Post Bone Marrow Transplant(PBMt) and Carter had a rough weekend. His hemmoraged left eye has now turned into a full fledge black and red eye.He looks like he was in some kind of baby fight club, I just hope that the other baby looks as bad as he does. He has also developed a full body rash that doesn’t seem to bother him yet, but looks horrible. The good news about that is they believe it has something to do with his engraphment (which means his new cells are starting to find their home which can sometime cause an “engraphment rash”). The real hard part for us right now is how lousy he has been feeling, he has completely lost his appetite and is now on full time nutrition through his chest tubes. They have been giving him Morphine to help with the  pain and uncomfortable state he is in. I tell you it’s tough to ask for morphine for your child, but its equally tough to see your child  so uncomfortable. We are starting to see his white blood cell levels go up which is GREAT and we hope as these counts continue to rise that he will start to feel better.

Jan. 25, 2008 - Day 9 (PBMT) — As most of you know, I have a rather large place in my heart for my mom! She like many other women had to battle against many odds to provide a living for her two kids on her own. Working many hours, later nights, different jobs all to make sure we were provided for. Now she would be the first to admit that she is not perfect and she made decisions that she regrets in raising us, and heck my sister and I might be the first one’s to remind her, but her strength, hard work, courage and determination helped mold us to the people we are and we will never forget that!

I have grown older and now a parent myself faced with so much adversity. I couldn’t imagine if I facing this alone, it would be unfathomable! Which leads me to my beautiful wife,Deni ….I can’t tell you how much I am blown away by my wife, with all the crap we have faced and to see her son go through what he has, on top of her ability to juggle so much stuff and still keep a level head (because I normally can’t) is so inspirational to me. How Deni can take in bad and good news, do laundry, pay bills and pretty much work a full time job (she continues to hit her sales goals) while going through this, is amazing! Sure she has her times, but like a cat, she always falls on her feet. She keeps me in line as well (everyone knows that is a full time job in it self!) After 12 years, It’s amazing to me how different we have become in so many ways, but how those differences help balance us out…when one’s down the other is up! We argue and disagree (she’s normally right), but we like to “agree to disagree”. She remembers “that”, I remember “this”! But the best part of all it all, it comes together when we most need it…. Like Now!

Mother’s are a different breed… when you get a chance call yours up and tell her you love her as I will today!

Jan. 25, 2008 — Day 8 (18) — It must be the fact that I am watching too much American Idol, that I actually am using a Paula Abdul lyric as a title for my post today…Just call me MC Scat Cat!  Anyway on a serious note, today was a serious reminder for our family that we are not out of the weeds yet! The staff here at had warned us repeatedly that we were in a process that would take time and care, and until we were completely through with this procedure which will take up to 12 -15 months we were going to face complications with Carter’s health. I don’t think they were truly anticipating any problems with his eyes… but unfortunately that last two days Carter’s left eye had been bothering him each day it seemed to get worse until this morning it was the size of a walnut and had completely hemorrhaged. His entire white space of his eye had become blood red and he was having problems opening it up.  The doctors were quick to get him into a CT scan to check for any possible brain or blood vessel hemorrhaging. Well we were happy to find out that wasn’t the case, but learned from our family friend and awesome Ophthalmologist, Dr. King, who made a special “house” call to check it out determined that Carter had a corneal scratch (OUCH!!). On top of that, Carter hasn’t taken any solid food or formula for two days because every time he would eat it would just come back up. Our doctors believe he has developed some stomach or intestinal sores from the Chemo treatment which is normal, but is very uncomfortable…safe to say he is now on I.V. Nutrition.

We hope the weekend is much better!

Here are some of my favorite pics that shows how much Carter has come… he still is up and down… but still smiling.  These might be some of the last photos we have of him with hair for a while, because it’s starting to come out in bunches… so no more “Crazy Hair Carter” pics for a while.

This is a poem that my 11-year-old niece, Paige wrote for Carter… I warn you I can’t read it with out tearing up!

Carter

Carter is an Angel

From up above

Butterfly from a coocoon

Carter is a flower

Like no other

The first snow of the winter

singing bird in the morning

Carter is a

Very special baby

I love Carter!

By Paige Mathieson

Paige … We love you too!

Jan. 21, 2008 - Day 4 (Day 14) — It’s hard to believe we have been in this 200 Sq Ft. room for two weeks. Although it seems like an eternity it also has flown by, kinda like a short work week, but you have to double shifts each day. We are excited about Carter’s progress, and so are the Doc’s. Although he still has stomach cramping, diarrhea, and reflux flem (and no they can’t give him Pepto or Pepcid AC…I asked) he is doing good. We did learn something new today, that I misinformed you all earlier, we have a longer wait then we thought to find out how the transplant took. We have about 10-14 days of waiting to find out if the transplant took, which was kinda of a bummer to learn, the anticipation will be tough.

We will have more pictures for you all tomorrow, as well as the earlier promised transplant video.

We want to also take a moment to thank the Bumstead family, Kevin and Sue. Kevin is an electrician and HVAC specialist that has come to our aid in some recent home repairs just to make our home safe and livable for Carter when he returns from the hospital. He has taken time out of his own schedule to help with this, as well, his wonderful wife, Sue has become our Carter’s new adoptive Grandma, and they have both have done so much to pray and pass along his inspirational tale. THANK YOU AGAIN!

Jan. 19, 2008 - Day 2 POST BMT - After Day 1(PBMT) where Carter continued to feel the side effects of the Chemo treatment and breakout into a splotchy rash, clogged chest tube, and really just feeling crappy, you can imagine our excitement to see him return a little to his normal self today. The rash that was all over his face and neck has gone down and his chest tube unclogged (PHEW!). Carol, his nurse, was excited to see him “flirting” with her this morning and batting his “baby blues” at her. I feel that in almost 12 days I just took my first breath, and it feels good. So all at once….inhale….exhale….it feels good!

We are continually moved by your comments and thoughts and prayers you have passed along to us… you are all special people.

Jack Johnson has a song titled “Where Have All The Good People Gone?” Well I know where they have gone…around us!

By the way, I haven’t had the chance to thank Kroenke Entertainment, Leslie in their Community Relations Dept. for coming forward and donating a Nuggets Signed Basketball for our silent auction at Jackson’s on Super Bowl Sunday. We have over 100 silent auction/raffle tickets for our event and I will try to personally thank each and everyone of you if I can.

FYI…I’ve learned that most of you have not received my Evite (I HATE THOSE!) so please keep a look out for a personal invite from me in the next day or so, I truly hope you can all come out for a good time and cause!

January 17, 2008 - At 12:15 (MST) Carter underwent his Bone Marrow Transplant Infusion. It lasted about only 45 min. and for something so exciting, so medically unbelievable, and so very, very important to us, the procedure was very uneventful. Which you won’t find us complaining about. Up until about 10:30am this morning we were all waiting on pins and needles to find out if we were going to be able to do the infusion today, since we found out yesterday that he had developed a bacteria infection in one of his Broviac chest tubes that was causing him to have high fever and restlessness, but the wonderful and very competent Oncology/BMT staff were quick to act because of their excellent game plan and were able to snuff it out before it became too much of a threat. Our family would like to take a quick second to thank the entire BMT staff here at Children’s Hospital including Dr. Quinones, Dr. Giller, Tracey Flannigan and the entire BMT Nursing staff including: Carol, Ron, Ricardo, Bethan, Shannon, Sarah, Allison and many more. We are all cautiously optimistic about this step, but unfortunately it must be duly noted we are not out of the woods yet, there is a reason they call today “Day 0″ in a process that can take up to 100+ days. So, this day will always be a special day in the Brotherton family, it’s like Carter’s second Birthday! More to come soon, including a video of the infusion process that you will either find to be very interesting or completely boring!

January 15, 2008 - Day -2 (Day 8 ) - It has been a couple of days since my last entry, mainly because this has been the toughest days yet for our Carter and for our family, if you read below, you will note that Carter is now in his last day of chemo treatment. He danced his last dance with the ATG at 9:30pm(MST) and for the past two days has fought face to face with it. He has been fighting 103 degree+ fever for the past two days and for us it’s been tough to see our little guy so sad, although let be noted, that when his temp drops down to the 99 - 101 degree marks he still gives us a smile almost to tell us “Bring it ON!” Which brings me to my lesson of the day. COURAGE is defined by Webster’s as: mental or moral strength to venture, persevere, and withstand danger, fear, or difficulty. COURAGE implies firmness of mind and will in the face of danger or extreme difficulty. The National MPS Society (www.mpssociety.org) has purple rubber wristbands that have the word COURAGE written on them, although I have worn one on my wrist since our good friend Janisa had given some to us that she had purchased from their web site (which all of you can too for a mere $1), I don’t think I knew what COURAGE meant…Now I Do! Carter is teaching us all what COURAGE means, and I can’t thank him enough! Carter is finally done with the dreaded Chemo treatment and will be “enjoying” his day off before getting his Transplant Infusion on Thursday @ 11am(MST). In Carter’s words “Bring it ON!”

On another note, I want to send a quick thank you to all of you that have come forward with some unbelievable silent auction/raffle items for the Super Bowl Benefit that we will be having on Super Bowl Sunday @ Jackson’s Sports Bar in Lodo. I recently sent out an evite (I HATE THOSE!) so if you plan on attending please respond so we can get an accurate count on who will be there, and if you didn’t get an “evite” let me know as well you are all invited and pass it along… believe me you don’t want to miss this event, there will be a chance to win a 42″ Plasma TV as well as some GREAT silent auction items.