Saturday, June 13, 2015

Facebook update from Help Anton

Day +79 Here are some things we have been doing and an important update on Anton. We found Chick-Fil-A and I cried happy tears. Someone donated their suite tickets to RMH for the Imagine Dragons concert so a few of the Mom's and teenagers from Ronald went. We had a blast. The kids went to drama camp at RMH and put on a play. It was Wizard of Oz, Kenya got the leading role as Dorothy and memorized all of her lines in 3 days. Anton and Judah were munchkins. They all did so good Anton even danced at the end. I got all teary eyed watching Anton act in a play. It is neat to get to see him do "normal" things after transplant thanks to being at The Ronald McDonald House. We got to see Elisa at clinic on Friday. She had the bone marrow transplant done a year ago and is doing so good! And we got to see Dr. Tolar! He is such a great doctor and even took time to ask how I was doing. A young man who will be trying out for the Timber Wolves son brought his family to RMH to play basketball with the kiddos. Judah would made 36 baskets by the end of our time with them. All three kids had a blast. The only places Anton has been since transplant is the hospital, RMH, and church. Last night we went out to eat with some very special friends. It was our first time out as a family since transplant. We had a great time and all of our kids did great! I got to go have breakfast with Christie Zink and Kiira Kinkle Mama, Kirsti. Kiira is starting work up for her transplant next week and will be be having her BMT soon. We also got to spend some time with Reid and his sweet Mama today. I love having EB families so close! Now for the update on Anton. When we got to the hospital last week Anton was having watery diarrhea 6 times a day over a thousand ML's in volume. His doctors thought he might have Graft vs Host in his stomach. They stopped his tube feeds and switched his CSA and Steroids to iv they also increased his Steroids to a very high dose. After about about 5 days his stool was back to normal. They were just assuming it was Graft vs Host and put him back on oral Steroids at discharge. After two days home his diarrhea was back so they changed his steroids back to iv and his csa also back to iv. The only was to know for sure if he has Graft vs Host in his stomach is to do a bisopy of his stomach but they don't want to do that because it is pretty invasive and the treatment wouldn't change from what they are doing now even if it was confirmed as Graft vs Host. This can be a serious compilation after transplant but so far it is under control. We are still at RMH and just doing is iv meds here! We are thankful to be at RMH and not in the hospital. And now the sad news... we will not be coming home at 100 days post transplant. In fact we have no clue when we will be coming home. We knew coming in to transplant that we would most likely be here longer than 100 days but to have Dr. Tolar confirm that we will be here for awhile made it more real. We have no time frame at all, we will be here until Anton is healthy enough to come home. - June 13, 2015 at 04:22PM

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