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.
Archive for May, 2008
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.
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.
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,
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!)
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.