Aug 2014 MRI results Ive been terrible at blogging lately, sorry! The good news is, theres not much to report. Adele is doing great, the three big kids have started school and we are pretty much business as usual. The biggest news, Adele had her 2nd MRI today since starting this LEE trial. The preliminary report is stable. Thats great news, she was given a 10% chance to beat this cancer in April of 2013 and less than 20% of kids with atrt survive 12 months. I was explaining to the kids what stable means and Simon, our 9 year old, said so stable means it cant hurt her, right? Right. Of course, we all know Adele isnt usual or normal and shes exceeded every expectation throughout her cancer fight. Shes done better than the doctors have said she would through every treatment and experience. Kids over 3 with a complete resection get a 50-70% survival rate. Adele was 16 months at diagnosis and did not have a complete resection. She also had disease spread to her spine. Peter took her to her regular two week appointment last time. We found out then that her trial had actually ended. It was a phase 1 trial, which means this was the first time for humans to take this med. The researchers got the data they wanted from the trial, which was the best, safe dose and what human response would be. They were able to figure these two things out. Nothing really changes for us, the drug is still available and Adele will continue going to her bi-weekly St. Jude appointments. Her doctor did tell us that Adele so far has achieved the best possible result on this trial. There were kids that achieved stability on LEE but it wasnt long term. So she is basically on borrowed time. We do have a plan B, there is another ongoing trial pretty similar to this one. So, we sit a and wait. It seems crazy but today, hearing stable, was actually pretty anti-climatic. Weve pretty much been in limbo for several months and now limbo continues. I know its dumb, I have to focus on the positive and just be thankful. Its surreal, thinking our baby daughter has brain cancer. Shes great right now but could go downhill in a hurry. We have to live for today and the immediate future. Weve definitely adjusted our priorities and way living. Thank you so much for praying for Adele. Your prayers are instrumental in her health. Jesus, thank you. We trust in you. Please grant Adele permanent healing.
Posted on: Thu, 21 Aug 2014 00:27:20 +0000
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