Wednesday, November 26, 2014

Facebook update [pic] from Help Anton



I have had a few people ask me why we are doing the bone marrow transplant now instead of waiting for the gene therapy that Dr. Tolar is working on. I thought it was a great question so I'm going to answer it here just in case some of you were wondering the same thing or were just wondering why we are moving forward with the Bone Marrow Transplant. We have known about the Bone Marrow Transplant pretty much since we found about about Anton. We have followed Dr. Tolar's work closely and we were very hopeful that at some point Anton would get the Bone Marrow Transplant done. The first two years Anton was home we just didn't think the risk of getting the Bone Marrow Transplant done outweighed the risk of not doing it. He seemed pretty healthy (although he was hospitalized several times for infections). He didn't seem like he was in a lot of pain, and overall he had a great quality of life. As more time has gone on I have have seen countless children and adults lose their battle with EB. Most of the people who have passed away these past few years have Anton's type of EB and most of the people who have passed away have died before they turned 20. The harsh reality is Anton most likely won't live to see his 20th birthday unless we do something to intervene. During the past 6 months or so we have noticed Anton is in more pain than not. He is still happy and joyful, we can just tell that his EB is affecting his daily life. It seems like his quality of life is not what is could/use to be. Anton had a normal echo done on his heart in October of 2013 then in July of 2014 his echo showed that the left ventricle of his heart was dilating. At this point his heart is still functioning normally but I talked to the cardiologist at the patient care conference and he said almost always in patients with RDEB once the left ventricle starts dilating it will eventually turn into cardiomyopathy. (Cardiomyopathy is a weakening of the heart muscle or another problem with the heart muscle. It often occurs when the heart cannot pump as well as it should, or with other heart function problems. Most patients with cardiomyopathy have heart failure, "google") If Anton loses heart function he will no longer qualify for the Bone Marrow Transplant. Dr. Tolar spoke at the Patient Care Conference we went to this year and it was so amazing to see how far his research has come. It is FAR less risky than it was 2 years ago. It is hard to know how much Anton needs this when you see mostly happy posts on his facebook page. The harsh reality is Anton's eye lid gets stuck to his eye ball at night and when he opens his eyes it literally tears the top layer of his eye, he has a large wound on his knee that has NEVER healed in the almost three years he has been home, he is terrified to poop because the one time his stool was hard it tore the lining of his bottom causing extreme pain, he gets blisters in his throat that pop which makes him throw up blood, his fingers are fused together and he has lost almost all the function in his right hand because his thumb is fusing to his hand, bath time is painful instead of fun, he can't scratch his face at night without tearing all the skin off his nose. This sweet boy suffers so much and if we can help relieve just a little bit of his suffering we want to. Knowing that if Anton loses heart function he will won't be able to have the BMT done, seeing how much pain he has been in, and knowing that the Bone Marrow Transplant could at the very least give him a better quality of life we felt like it was the best option for Anton to move forward with the transplant. We are in close contact with several people who have had the transplant done and we are very hopeful for what the future will hold for Anton post transplant. Dr. Tolar is an amazing doctor and he truly cares about people with EB and their families and I know that he won't stop fighting for a cure. We are thankful that God has allowed us to move forward with the Bone Marrow Transplant. We are praying for God's will in all of this and praying that God will be glorified through Anton's life. For from him and through him and to him are all things. To him be glory forever. Amen. Romans 11:36 #cureeb #irefuseeb #bmt via Help Anton http://ift.tt/1xUgSKc November 26, 2014 at 05:16PM

Saturday, November 22, 2014

Facebook update from Help Anton

Training for a marathon to raise money for EB research. Ran/walked 3.5 miles to my friend Meghan's house and then almost 4 miles home (came back a different way than I went). #cureeb - November 22, 2014 at 02:36PM http://ift.tt/1r2lUi4

Facebook update [pic] from Help Anton



via Help Anton http://ift.tt/1v9SGT3 November 22, 2014 at 02:36PM

Facebook update [pic] from Help Anton



via Help Anton http://ift.tt/1v9SEdE November 22, 2014 at 02:36PM

Tuesday, November 18, 2014

Facebook update [pic] from Help Anton



We have some super exciting news!!!! We took Anton to The University of Minnesota Children's Hospital September 8th - 10th to go see Dr. Tolar and to find out if Anton qualifies for the Bone Marrow Transplant. We just found out yesterday that Anton does qualify for the Bone Marrow Transplant!!!! They are in the process of locking down an unrelated donor and getting insurance approval. If they choose a bone marrow donor he will have the transplant done in 3 months and if they choose a cord blood donor it could be as soon as 3 or 4 week (but I don't think we would leave that soon). Our whole family will be moving to Minnesota temporally to be close to Anton and to support each other during the transplant. Jason will be able to work for the same company while we are up there, Kenya will go to school at the Ronald McDonald House, and Judah will be hanging out with which ever parent isn't at the hospital with Anton. We will be living in a hotel until a room opens up at the Ronald McDonald House then we will move into the Ronald McDonald house for the remainder of our stay there. We still aren't sure how long we will be gone. We have to stay in MN for 100 days post transplant but we have decided to stay as long as needed to get Anton as healthy as possible. It could be four months or it could be a year. We are just going to play it by ear and do what's best for Anton. We are very excited about this treatment because it can give Anton such a better quality of life! Here is a news story about a little girl who had the transplant done recently. http://ift.tt/1us94wA Here is a link to more information about The Bone Marrow Transplant for people with Epidermolysis Bullosa. http://ift.tt/1us94wC I will keep y'all updated!! via Help Anton http://ift.tt/1us94MQ November 18, 2014 at 03:45PM

Friday, November 14, 2014

Facebook update [pic] from Help Anton



Real Food Blends via Help Anton http://ift.tt/1GXWpYN November 14, 2014 at 03:24PM

Facebook update [pic] from Help Anton



Real Food Blends via Help Anton http://ift.tt/1GXWo7h November 14, 2014 at 03:24PM

Facebook update from Help Anton

We are so exited our insurance approved our Real Food Blends :) - November 14, 2014 at 03:24PM http://ift.tt/1r2lUi4

Friday, November 7, 2014

Facebook update [pic] from Help Anton



Happy Birthday Daddy! via Help Anton http://ift.tt/1tmkzld November 07, 2014 at 01:51PM

Saturday, November 1, 2014