Gotta say I'm super proud of my son this weekend. He finished the St. Jude's Nashville Half Marathon for the 2nd year in a row now. It was less than ideal conditions with heavy rains and cold winds the whole race but there was no stopping him and Erin. Six months ago, he could barely walk from the pain and numbness in his legs caused by the tumor pressing on his lower spine. I thank God everyday that he feels so good right now. Our Emily's Power For A Cure marathon team raised over $108,000 for neuroblastoma cancer research!
We go back sometime near the end of May for scans to Michigan. Praying Tristin is doing as well on the inside as he looks on the outside. We will decide then what our next treatment options are and what's best for him. His quality of life is so great right now and if the DFMO is improving things, we might keep him on it. I just hate to miss the window to get on the Molecular Guided Therapy trial if he qualifies for it. Just have to keep praying about it and know that The Good Lord will lead us in the right direction.
We've been talking with Lara and the Make A Wish people for 3 years now. I just have to say that Lara is awesome and has moved mountains to pull this upcoming trip off. She told me that she wasn't going to take no for an answer when she submitted Tristin's wish to their board. I know it's been very challenging to plan a dream trip when in reality you have no idea what or where you will be each month too. Everything always depends on scans, blood counts, and of course how Tristin is feeling. Who wants to go on a vacation when your throwing up and feeling like crap? We knew our oncology teams would work with us as much as they could so we decided we would take a chance, go for it, and shoot for the beginning of summer when school gets out and hoped everything would fall into place. Tristin's exact wish was "I want to have a tropical paradise vacation. I want to go to Bora Bora and stay in the overwater bungalows like in the movie Couples Retreat with Vince Vaughn." Well, we will be leaving May 30 and heading off to Bora Bora and staying in the overwater bungalows :) .......Tropical paradise.
Thank you for continuing to keep us in your prayers. Please pray that Tristin's scans will be improved when we go to Michigan in a few weeks and that we will be guided in the right direction on what treatment options are best for him.
With Hope and Faith,