Sunday, February 28, 2016
Facebook update from Help Anton
Done! 3 hours 3 minutes 2 seconds (I think). Love you Anton! #antontough - February 28, 2016 at 10:12AM http://ift.tt/1r2lUi4
Facebook update from Help Anton
Done! 3 hours 3 minutes 2 seconds (I think). Love you Anton! #antontough - February 28, 2016 at 10:10AM http://ift.tt/1r2lUi4
Facebook update [pic] from Help Anton
via Help Anton http://ift.tt/1KUUzx2 February 28, 2016 at 10:12AM
Facebook update [pic] from Help Anton
via Help Anton http://ift.tt/1RcKc4l February 28, 2016 at 10:12AM
Facebook update [pic] from Help Anton
via Help Anton http://ift.tt/1KUUzgG February 28, 2016 at 10:12AM
Facebook update [pic] from Help Anton
via Help Anton http://ift.tt/1RcKbO3 February 28, 2016 at 10:10AM
Facebook update [pic] from Help Anton
via Help Anton http://ift.tt/1KUUzgA February 28, 2016 at 10:10AM
Facebook update [pic] from Help Anton
via Help Anton http://ift.tt/1RcK8BN February 28, 2016 at 10:10AM
Facebook update [pic] from Help Anton
15 minutes till race time, w00t! via Help Anton http://ift.tt/1Tfjoqo February 28, 2016 at 06:46AM
Saturday, February 27, 2016
Facebook update [pic] from Help Anton
via Help Anton http://ift.tt/1LMInJO February 27, 2016 at 07:56PM
Facebook update [pic] from Help Anton
via Help Anton http://ift.tt/1TGEpsE February 27, 2016 at 07:56PM
Facebook update from Help Anton
Tomorrow I will run 13.1 miles (as part of the EB Research Partnership team) and thanks to you guys we have raised over $3000 for EB research. I was missing Anton something fierce tonight (I will post more on that later) and was thankful the race was tomorrow so I could run in his honor. If you want to donate to my run you can do it here: http://ift.tt/21rezil If you want to get your Anton Gear while donating to my run you can do that here: http://ift.tt/20FdiDU Thanks for all the love and support, I will post once I cross that finish line tomorrow! https://ebresearch.org/ - February 27, 2016 at 07:56PM http://ift.tt/1r2lUi4
Wednesday, February 24, 2016
Facebook update from Help Anton
I think as a whole the EB community seems to be afraid of bone marrow transplants for EB. I think the majority of people's fears are based off of rumors and not the truth. I was terrified of transplants when we brought Anton home but it was mostly from hearsay and not based off of any facts. In 2014 doctor Tolar spoke at the Debra Patient Care Conference. He shared the FACTS about his research and shared that 9 out of the last 10 patients with EB had survived transplant. At that point is was safer to have a bone marrow transplant for EB than for leukemia. I HIGHLY recommend anyone considering transplant to listen to the recordings from that conference (https://www.youtube.com/watch?v=Wm1Pzh25p1U&list=PLcYypgvIdmQg9qy8rIeFULtGoQgbd1uvL), or attend the conference this year where Dr. Tolar will be speaking. I also HIGHLY encourage anyone considering transplant to talk to other parents who have recently gone through it. The protocol has changed so much from where it started. The other thing I would say is contact Dr. Tolar's team directly with any questions. Find out from the source instead of going to people who may have outdated information. With all that said... Last year was a hard year as far as BMT's for EB goes but I think it's important to look at the facts. Two of the sweet babies who passed away had junctional herlitz. Anton's BMT went amazing. He was 100% engrafted with his donors cells, and over 50% engrafted in his skin (which is a huge number). Anton hardly ever got blisters and hardly ever got new wounds (after transplant). His transplant worked and it worked beautifully. He died of intussusception which is NOT a complication of transplant or EB. Kiira didn't fully engrafted with her donor's cells, which is heartbreaking but unfortunately does happen sometimes with transplants (not just transplant for EB). The thing about BMT for EB is it isn't a cure and is a trial so no two patients are going to have the same results. Although I do think it is the best chance people with EB have at this point. I always tell families considering transplant to make the best decision they can at the time. Well really that is my advice about all things EB. You pick the lesser of two evils, there is hardly ever a good and super easy choice when it comes to treatment with EB. It took us a really long time (about 3 years) to decide we were ready to move forward with transplant. The reasons we decided to move forward are... We saw so many people will RDEB die before their 20th birthday and that scared us. Part of the reason we chose to move forward was in 2014 the last 9 out of 10 patients who had a BMT for EB had survived. The right ventricle of Anton's heart was dilated, this almost always turns into cardiomyopathy in kids with RDEB. We knew if Anton developed cardiomyopathy he could be disqualified from transplant. Anton's quality of life had also gone down in the few months before we made our choice. He was in pain most of the time (despite some pretty strong meds), he was getting corneal abrasions all the time, and he was just having more bad days than good. All of those thing (plus so many more things) played into why we chose transplant. I will say without a doubt given the choice we would have chosen transplant all over again. It GREATLY improved Anton's quality of life (which I know was hard to tell from FB). He hardly ever got blisters (maybe 5 totally in 5 months), his skin was so much stronger, he hardly ever got wounds, and went from having corneal abrasions ALL THE TIME to never having another one post transplant. He went 8 months without a corneal abrasion! Tolar said the eyes are the only place that transplant doesn't go to but several of his patients stopped having abrasions after transplant. Yes transplant is scary (it is a MAJOR medical procedure) and there are no guarantees with it at all but there are also no guarantees with doing nothing. I have so much love for our EB community and this isn't a push at all to get anyone to consider transplant. Instead this is an encouragement to anyone considering transplant to get the facts from a reliable source. Big Hugs! - February 24, 2016 at 09:11AM http://ift.tt/1r2lUi4
Facebook update [pic] from Help Anton
via Help Anton http://ift.tt/1TyXahB February 24, 2016 at 09:11AM
Facebook update [pic] from Help Anton
via Help Anton http://ift.tt/1VEkJoo February 24, 2016 at 09:11AM
Facebook update [pic] from Help Anton
via Help Anton http://ift.tt/1TyXahu February 24, 2016 at 09:11AM
Thursday, February 18, 2016
Facebook update [pic] from Help Anton
Happy 1st Birthday Colton. You have forever changed my life sweet boy. via Help Anton http://ift.tt/1ow0v5J February 18, 2016 at 10:52PM
Sunday, February 14, 2016
Facebook update [pic] from Help Anton
We arrived in MN yesterday bright and early. We are going to an art gala at the hospital on Monday featuring pictures from 6 families at the University of Minnesota Masonic Children's Hospital. The project involved the families taking pictures and a professional photographer taking pictures through the child's medical journey. The pictures will be on display at the hospital for an art gala/fundraiser for arts in the hospital. We are so thankful we got to be a part of this project and so thankful for the priceless photos we now have. As soon as we got here (around 9am) we headed straight for the hospital to see Baby Colton and his sweet Mama Jamie. I'm so thankful I got to hug Jamie and love on Colton. When you go through BMT together you become family and we have had some pretty neat people become a part of our family through BMT. I'm so sad to share with yall that Colton passed away yesterday at 6:15pm. My heart is so so broken. If you want to help the family a fundraiser has been set up. http://ift.tt/1KPpg6F Jamie, I love you guys so much. Thank you for sharing Colton with us all. We will forever love and miss Chubby Baby. via Help Anton http://ift.tt/1WlpSle February 14, 2016 at 12:51PM
Saturday, February 13, 2016
Facebook update from Help Anton
Ran 8 miles yesterday, thought about and prayed for sweet Baby Colton the whole time. - February 13, 2016 at 05:14AM http://ift.tt/1r2lUi4
Facebook update [pic] from Help Anton
via Help Anton http://ift.tt/1KgLnTz February 13, 2016 at 05:14AM
Facebook update [pic] from Help Anton
via Help Anton http://ift.tt/1QyewWR February 13, 2016 at 05:14AM
Thursday, February 11, 2016
Facebook update [pic] from Help Anton
We love you Chubby Baby and we are praying hard for you right now! http://ift.tt/23ZAAU9 via Help Anton http://ift.tt/1WgDG0j February 11, 2016 at 01:44PM
Monday, February 8, 2016
Facebook update from Help Anton
Exciting stuff... We now have youth sizes available for the t-shirts. We have youth small, medium, and large for the Anton the Brave shirt and youth medium and large for the Help Anton and Anton Tough shirts. Kenya and Judah can't wait to get theirs! http://ift.tt/20FdiDU - February 08, 2016 at 01:47PM http://ift.tt/1r2lUi4
Facebook update [pic] from Help Anton
via Help Anton http://ift.tt/1T0I9op February 08, 2016 at 01:47PM
Facebook update [pic] from Help Anton
via Help Anton http://ift.tt/1nTrPKs February 08, 2016 at 01:47PM
Facebook update [pic] from Help Anton
via Help Anton http://ift.tt/1T0I6Jk February 08, 2016 at 01:47PM
Facebook update [pic] from Help Anton
In the last few days we have raised $695 for EB research! Let's keep it going! Please share the link and get your "Anton Gear"! Thank you to everyone who has placed orders so far, you are making a HUGE difference in the life of people with EB! http://ift.tt/20FdiDU via Help Anton http://ift.tt/1QmUmyS February 08, 2016 at 09:54AM
Friday, February 5, 2016
Facebook update [pic] from Help Anton
So excited about these bracelets! I will post the link to order them in little bit. All profits will go towards Dr. Tolar's research! via Help Anton http://ift.tt/20yv4IQ February 05, 2016 at 08:30PM
Facebook update [pic] from Help Anton
When I pulled up this morning after dropping Kenya off at school my heart sank as I saw this one trash can sitting in front of our house. I was instantly flooded with memories of Anton and how we would have at least 4 trash cans twice a week full of trash from bandages, dressing change, his feeding supplies, ect... It made my heart ache and made me miss my sweet boy so much. Who knew trash could trigger heartache? Longing for the day when God will make all things new. via Help Anton http://ift.tt/1KuuLay February 05, 2016 at 08:09AM