Meet Carter

DKMS Americas & Carter Brotherton Bone Marrow Donor Drive

1st of all some new photos of Carter…

We are so excited around here for the upcoming week to begin. To start with many of you know that we had been approached by Deni and my previous employers and my current client Premier Ventures about hosting their annual golf tourney in honor of Carter. This Monday is that very golf tourney we are expecting around 150-175 people at the event and the tourney sold out quicker then it ever has. All proceeds are going to go to National MPS Society and Hinote’s Heroes and should be a lot of fun. But it doesn’t stop there. We were approached by DKMS Americas (www.dkmsamericas.org) about how many of you had contacted them about becoming Bone Marrow donors, we were so happy to hear that our son had inspired so many people to come forward to do something that could in turn hopefully save some one’s life. We are so happy to announce that we will be having two on-site Bone Marrow Drives in Carter’s honor, one at the tourney and the other at Children’s Hospital in Aurora. If any of you would like to come out and donate either to become a marrow donor or give a monetary donation that would be awesome. The dates are:

1. Monday, June 23rd 7am-8:30am @ heather ridge country club in Aurora

2. Tuesday, June 24th 11am -3pm @ Children’s Hospital in Aurora visit www.dkmsamericas.org to learn more about this event.

Some fun new photos of Carter…

Carter Update — Day 148 (PBMT) “Carter Gives Us a Scare”

Well our little Boo, sure does have the flair for the dramatic. And unfortunately Deni and I are not really into dramas. It’s no secret that anyone who goes through what he has had to endure you are going to encounter issues with eating habits, food taste and oral consumption in genera. lately Carter has had a hard time eating his solids to the point that chocking can cause him to look a little like the kid from the exorcist with pea soup. Not a fun thing for him or for us. Thursday evening the problem because worse when in the process of chocking he aspirated some of his food into his lungs and scared the bijeezus out of us. We had to call 911 and take him to the Children’s… Mom was so calm and she rode with Carter all the way to the hospital while I followed in the car. He was pretty much okay by the time they got him there, but it gave us all one hell of a scare. I don’t care to see him do this ever again! They decided to keep him over night to make sure he didn’t have any signs of food in his chest which can cause a form of pneumonia. He ended up staying into Friday afternoon, by the time he was good to go home.

The good news is that we had just been talking to the Docs on Wednesday about this problem and they were looking into a swallow study, which we all can agree that he needs again. The first one was given right before his BMT, and wasn’t really conclusive. This dramatic event has sped up the process of getting this done and we now have a swallow study on June 25th. This is much earlier then if we hadn’t had this problem.

Any way Carter has been doing good since. He is down to just formula for now, but we have increased the calorie intake and he has been slammin’ them down!

Happy Father’s Day to all you papas out their. I hope you all got a chance to do what you wanted to do and enjoyed your new ties or cool sweaters you got.

Carter’s Simon Sez Video

Destiny made this great video of Carter playing his favorite game… Simon Sez. Hands up! Clap! Clap! Clap!

Giving Medicine To Your Sick Child.

For any of those families that use our site to emphasize with what we are going through. It’s one of the toughest things you will have to do, giving your sick child oral medicine in the middle of the night. I just want to let you know, that they won’t remember you waking them up to give them their oral dose of medicine. It took Deni and I a while to realize this. It really sucks waking them up, believe me especially when you see them snuggling with their favorite animal and just snoozing along. And then you have to stick a syringe  with some nasty tasting medicine in their mouth…it sucks. But the good news is that they will forgive you and probably fall back asleep (after some initial crying). We learned that if you have their pacifyer near by as a go to  this helps. Also don’t try and force it down at once… give it to them in 2 - 3 doses, depending on the dose of course. Anyway, just wanted to let you know, as I am getting ready to give him his late night dose.

Carter Update Day 125 (PBMT)

It’s been a couple of week since my last update on Carter… I apologize for the few of you that have been following his progress. I guess I’ve been a little discouraged to talk you all. We were so excited about his “Day 100″ update, like it was going to be the last day of all treatment and we would just move on to a normal life after that, not that we were mislead, but our little guy is still got a long twisting road ahead that has a lot of blind corners that will yield caution signs all over the place.  We still have not heard any results from his “Day 100″ White Blood Cell Enzyme test which should tell us how successful the BMT was… The good news is that he has taken on all the donor marrow and now has new and improved Platelets and other important cells that would be tremendously important to any other BMT patient, especially one that is confronted with a particular blood related cancer. Our concern is his Enzymes…we wait.  Besides that, Carter has been doing well… we just wish that he would start gaining weight. He is still stuck on about 13.5 lbs…and he hasn’t lost weight… so that is good, but it would just be so cool if he would start to pack on the pounds.  He is really loving music… Jack Johnson is his favorite (and our favorite, since he falls asleep to his hypnotic voice at night… but any music really peaks his interest and calms him down.).

We are so thankful of Premier Ventures. They are the company that Deni and I first met. They own the fabulous Denver restaurants: Govnr’s Park, Paramount Cafe, Marlowe’s & Caldonia’s. They hold an annual charity golf tourney every year and this year they are going to do thier tourney for Carter. Deni and I are going to donate all the funds raised in Carter’s honor to the MPS Society as well as our new passion, Hinote’s Heros www.hinotesheros.org. , Please contact us if you would like to play in tourney or participate in any way. The tourney will be held at Heather Ridge Country Club on June 23rd.

National MPS Awareness Day

May 15th is National MPS Awareness Day. As most of you know our son has a type of MPS (Mucopolysaccharidoses) called ML II or I-Cell Disease, so I would like to take this time to remind you and inform you of this disease and why it’s so important to help people understand that with help this is a disease that can be tackled head on.

What Is MPS Day?

- May 15, 2008 is International MPS Awareness Day 2008. This is a day for families and medical professionals to celebrate and remember people with mucopolysaccharidoses (MPS) diseases, a family of rare, potentially fatal genetic diseases that occur because of the inability to produce specific enzymes.
-The National MPS Society will host celebration events at the Children’s Hospital Oakland Research Institute in Oakland, CA and North Carolina General Assembly Legislative Building in Raleigh, NC. Patients, families and physicians are welcome to join in the celebrations.
-The National MPS Society is partnering with biopharmaceutical companies BioMarin, Genzyme and Shire Human Genetic Therapies to commemorate this extraordinary day and educate the general public and medical community about the importance of early detection and treatment.

What is MPS?

-Mucopolysaccharidoses (MPS) and related diseases are genetic lysosomal storage diseases (LSD) caused by the body’s inability to produce specific enzymes.

-Symptoms of the diseases may vary from one syndrome to another although there are many similarities. Affected individuals often have mental retardation, cloudy corneas, short stature, stiff joints, speech and hearing impairment, chronic runny nose, hernia, heart disease, hyperactivity, depression, pain and a dramatically shortened life span

-There is no cure, but treatments such as recombinant DNA derived enzyme replacement therapy are available to treat three of the MPS diseases- MPS I (Hurler, or Hurler-Scheie syndrome), MPS II (Hunter syndrome) and MPS VI (Maroteaux-Lamy syndrome)and hematopoietic stem cell transplantation for MPS I and MPS VI. However, it is devastating to know that there are still many families around the country who are unaware that treatment, and in turn, hope, exists.

How Can You Help?

- Obviously since their is no cure currently the treatments such as Bone Marrow Transplants are being explored. If you haven’t already register to be a bone marrow donor you can find out more about being a bone marrow donor at www.dkmsamericas.org 

- Genetic research is key to exposing this deadly disease and the National MPS Society is monumental in forging forward this type of research, that is why it is imperative to help raise money because as you can imagine genetic research is not cheap. Go to www.mpssociety.org

to make a donation today, any amount will make a difference, believe me.

MeetCarter Meets DKMS

I wanted to share with you all this amazing email I received today from a representative of DKMS, an international bone marrow registry that is committed to the fight against Leukemia and other blood related disorders.

Hello Mr. Brotherton,
My name is Michele Poliskin. I work for DKMS Americas, the largest marrow donor center in the world, with 1.6 million registered donors.  I am writing to inform you that I have received numerous e-mails of people requesting to register to be marrow donors all in Carter’s name! How amazing! I was sent a link to his website and I found it to be truly inspirational. I noticed in the ‘how you can help’ section it says how to become a marrow donor.  DKMS would be honored to register people in Carter’s honor and if you would like to link to our site we will make sure we register everyone who is eligible. We do high resolution tissue typing and our registration fee is only on a donation basis. We are also available to help plan marrow drives in Carter’s honor anywhere in the US.  We can also mention Carter’s story on our website if you would like! This is just some stuff to think about. We strive to increase awareness of the dire need for donors and we seek to place as many people as possible onto the National Registry in order to increase the probability that patients can find their matches.

Here is our website to check out: www.dkmsamericas.org
Thanks so much,

Michele Poliskin

As you can imagine this was so awesome to hear, and from our family to all of yours….THANK YOU! To think that our son is out there making a difference really helps us come to grips with what we have been faced with. When I started this blog, I asked “Why Carter? Why Us?” and this is Why! I encourage all of you to visit their web site it really is pretty cool and there is a ton of information on how to get involved. We are also planning on raising more awareness at the upcoming Premier Ventures Golf Tourney on June 23rd (MORE INFO TO COME ON THAT SOON!)

Thanks again!

Carter Update - Day 105 (PBMT)

What was supposed to be a very magical day in Carter’s recovery process from his Bone Marrow Transplant, Day 100, was more methodical than magical. On Monday, April 28th Carter underwent what a battery of tests that help his medical team analyze the success of his BMT. It turned out to be a long day of hanging out at the hospital due to daddy’s mistake of feeding him the morning of his procedure so we had to wait a couple of more hours before they put him under. The basic tests he underwent were a Bone Marrow Test which and will be conducted every 3 months for a whole year. This test analyzes the amount of the donor marrow that has taken and how much is his old marrow. When he had this test done around Day 40 he was at 100% donor marrow. So any drop from this amount might be concerning so we will have our fingers crossed. We should have results of this test in 7-10 days. Carter also had a white blood cell enzyme test which will let us know if his new white blood cells that are being created from his donor marrow have a working enzyme, which his old white blood cells didn’t. This was the test that was given to Carter last October which helped diagnose his I-cell disease. It will be a few weeks for us to get the results back from this test as well, we obviously are anxious to hear these results as you can imagine.

New Pictures of Our Little Boo!

These pictures are worth a thousand words… Carter has a future in music!

Update Day 94 PBMT “With The Good, Comes The Bad”

Well I guess that with all the good news we were having we should of seen a little bad news coming our way, because with out bad news there never would be any good news right? In our little world things have been really going good for us. Carter has been doing so well lately and he was even officially taken off his steroids today, so when over the weekend we had problems with an unknown occlusion in Carter’s right Broviac chest tube which turned led to a ruptured Broviac chest tube, we weren’t really surprised by Dr. Giller’s decision to do an emergency surgery procedure to remove the bad Broviac to eliminate any possible infection it could cause we were all for. This bad news was turning to be good news, because he was doing so good Dr. Giller was comfortable to remove the bad tube and not replace it. (Yea!) So he schedules the procedure that takes around 25 minutes for 5pm Monday evening… no problem! He would be in and out and home for bed (yea!). You can imagine that when we checked in and we heard that he actually might be going in early for the procedure was even better news (yea!). But as we got closer to go time, and Carter got hungrier and hungrier…. we waited our time passed….we waited our time passed… We soon learned that with all after hours emergency procedures things can happen…bad things!  We learned that around 6:30p that due to unforeseen emergency traumas that included a little boy who had been impaled on a stick and another that was burned on more than 95% of this body that Carter’s procedure was now not of immediate importance. They subsided Carter’s hunger by a saline and sugar water combo IV….and we waited. We couldn’t help to feel for the other families, the bad news that we had to wait immediately became good news when realizing how fortunate we were on this night. I hope you all will give some of your positive thoughts and well wishes on to these two families as we did last night. So by about 12 am Tuesday morning we were finally out of surgery and due to the late hour they decided to keep Carter overnight to make sure he was doing okay. Which he was…by the time we made it back to the post-op bedside he was already flirting with this two nurses making them laugh out loud and I could of swore he even had one of them blushing with his baby blues. So what a day of ups and downs…. just another roller coaster ride in the day and life of our “little Carter Boo!”