I Wish I Could Freeze Him
Dear Friends & Family,
While I was taking Corbin to school the other day, a Taylor Swift song came on. As we were listening, Corbin said, "I wish I could freeze her until I caught up to her age and then unfreeze her". This past week I have been wishing I could freeze Curt. I wish I could freeze him until there is a cure for Lou Gehrig's disease. I believe that within a few years this will be a totally curable disease. There is so much research going on right now for Lou Gehrig's Disease. Sadly, I watch Curt's health deteriorate daily, knowing that the cure will not come fast enough.
We have an opportunity to get a stem cell treatment in Monterrey, Mexico anytime. The doctor there was recommended by our friends who had a relative treated there (for a different disease) and had great results. The US doctors advise against any stem cell treatments in other countries as they are not monitored and there is no data on effectiveness or safety. But I am beginning to feel desperate, I feel we need to do something now to stop or at least slow down the deterioration.
There is also a research study at a well accredited hospital in Monterrey, Mexico that we are trying to get Curt accepted into. He would not be eligible to be treated until after July. We are not sure we want to wait that long. Please pray for us to make the right decision.
On a happier note; we had an awesome week last week. We celebrated my birthday pretty much all week. Dinner on Wednesday with my parents, Curt's mom, and the kids was lively and delicious. Friday my friends arranged a day at the Spa! We all enjoyed massages, an outdoor hot tub soak, a grand Asian lunch on a private patio wearing our Spa robes, and finally a super indulgent shower. Thank you Carolyn, Lori, Lisa, Lynn and Jaime for making my day so special. You guys are incredible! On Friday night we enjoyed a shared birthday party with friends. Thank you Bill & Carolyn for a great party; the food, fire, music and laughs warmed our hearts. We spent Saturday getting Clarissa ready and off to Winter Formal. She looked beautiful in her red dress and high heels, thank you Michelle for doing her hair and make-up, she looked great. On Saturday night our friends Jim & Colleen threw an outstanding birthday party. We had fun visiting with friends by the outdoor fire, enjoying great food and wine, and playing the fast paced card game of Snatch. On Sunday we enjoyed watching Clarissa's first volleyball tournament of the season at a super cool facility in Hawthorne. Watching her play was exciting. Spending time with her and the other volleyball players and parents made for a great day. Cayden went to the movies with friends, had a sleepover and got to go shooting with Johnny. Corbin went on a Harley ride with my dad, watched a movie with my mom, spent the night with them and enjoyed a great breakfast together at their favorite place. Needless to say it was an exhausting (but good) weekend. We all do really well when we are busy; it keeps our minds on today, and making the most of each day.
The strength of our kids is impressive. They are really strong and supportive of each other. Clarissa was excited to take Cayden to volleyball tryouts last night and watch him try out. Cayden told Clarissa how beautiful she looked as she was leaving for Winter Formal. Corbin tells them both how much he loves them all the time. We are so blessed!
Curt & I talked last night about the dark side of what is to come. We cried together. Although Corbin was not in the room during the conversation, he felt sadness as Curt & I interacted later in the evening. Corbin told me he was sad for dad and then cried for awhile. It was bewildering that he sensed our feelings when we thought we were acting normal and covering our emotions. I took today off so Curt & I could spend some quiet time together. It started out sad and quiet but the amazingly beautiful weather lifted our spirits and we enjoyed a great lunch at Walt's Warf in Seal Beach. Just being together is all we need.
Tomorrow Curt is having another nerve/muscle testing session. Please pray for his comfort. It is a two hour test of needles and small shocks all over his body. They do this to measure his regression. They keep track of how fast his health is declining. He is so brave and ok with it all. It makes me sad to see him go through these painful tests, knowing that there is no point to the suffering he has to endure. I keep these thoughts to myself as I hold his hand and dab the blood that comes out when they remove the needles. I think positive thoughts and pray for him during the procedure.
Thank you to the McGhee family for setting up a meal schedule. Although we are physically ok right now, it is a really nice treat to come home to meals on Mondays. Thank you to all who have signed up, you are so thoughtful. The kids are amazed that people are making meals for us.
Once again, thank you for all your prayers and support. We talk often about how lucky we are to have you all in our lives. Thank you, thank you!
Cindy, Curt, Clarissa, Cayden & Corbin