We received some extremely good quality of life news on Thursday – our next round of hu14.18 will be here in Atlanta! We are thrilled…. as you can imagine the separation of Patrick and me from Stephen and the girls is difficult and lonely. We are thrilled that our separation will be a matter of a mile rather than almost 800 miles!
Patrick has felt great the last couple of weeks, and we hope this means the drug he is receiving is effective. The only bump in the road was severe headache and nausea that subsided when we discontinued his accutane (one of the 4 drugs that comprise his trial). Since then, he has been feeling great! He even went to school 2 days last week, which made me so happy and emotional at the same time. I can’t give the TCS teachers enough credit – we showed up out of the blue and they made him feel like he hadn’t missed a beat! He even asked to do homework the next morning! We are beyond blessed to have The Children’s School in our lives.
The only mar on our happiness right now is that Patrick is reacting to the shots he is getting as part of the trial (another of the 4 medicines). We hope these reactions will stay mild, but last night he scared us with vomiting and throat issues. We were very worried that he was having an anaphylactic reaction, especially given his reaction to the shots during 3F8, but an extra dose of Benadryl (on top of standard doses of Benadryl and Zantac) turned the tide. We gave him his shot earlier toight and are watching the slow build to a reaction. So far, it is manageable… praying that it stays that way.
Our prayer requests for you faithful followers are: 1) that his reaction to the shots does not escalate, 2) that he does not have any painful or negative side effects to the treatments this week, and 3) that the treatments are effective. Thank you for keeping us in your prayers. We scan sometime after Thanksgiving and will let you know when we have the exact date.
Speaking of Thanksgiving, we have a lot to be thankful for this year. We are celebrating a family that will be whole, something we weren’t promised earlier this fall. We are celebrating a treatment that we are receiving with hope, a treatment that was unavailable earlier this fall. We are celebrating a community of faith and hope, something that has been available to us for over 5 years and that we couldn’t live without. Thank you for helping us Press On. We love you!
And speaking of love and thankfulness, we want to wish Turner Simkins a happy birthday tonight. I can’t think of anyone with a bigger heart, bigger dreams, or a bigger desire to cure childhood cancer. We love and admire you, Turner, and hope that you and your family will be home together soon.