Entry five Thursday night
It was another full day. Ian had 8 injections in his pectoral muscles. Once again he seemed ready to accept whatever he needed to. The placement of those stem cells will help him breathe better. We talked to the doctor more about the politics of stem cells. At this clinic they do not use any embryonic stem cells. They say that those have too many ethical problems that they don’t agree with as well as other scientific problems. Those from umbilical cords is what they use.
Once again the part for the wheelchair has not arrived. Maybe tomorrow. Every other afternoon we have been stuck inside our room as it pours down rain… but today we had a reprieve. We were starting to get a little cabin fever. We took a jaunt to the local grocery store and found the sidewalks to be hideous. It was a good thing Ian had his manual chair because his power chair would not have made it. There weren’t the curb cutouts we take for granted so he would have been stranded several places.
Today while Ian had physical therapy in the water with the beautiful Latinas cradling him in their arms, I took the opportunity to write. People who have read my book about the life transformation of the blessed gift of Ian have told me respectfully that they didn’t really think the story was finished. I was ready to find an agent and send it off, but now I see that we are living through another major chapter that should be added.
Something amazing should be told now to people who might not know. When I was in the 7th grade I was particularly off-centered. My mom and stepdad were divorcing and so many anchors of stability were removed. My science partner that year was Neil Riordan. I could not stand him and he says that I tortured him. He was so smart and so interested in learning everything he could about science. I was out of control with my need to be outrageous and shocking to everyone. I’m sure I was a major distraction to Neil. For me Neil was a major nerd and way too serious about science. After that year we both mellowed toward the middle and had a friendship of mutual respect. We went all the way through highschool together sharing times of a misspent youth.
Advance 30 years--- Neil is the research doctor who has the big office in this clinic. He’s the one organizing the treatment facility for all of these people. His brilliant scientific mind is making it possible for my son to have a chance along with so many others.
Neil is a very good friend of George who is the father of Ryan, the first case of muscular dystrophy that was treated. George also went to school with us. Ryan’s mother and I were even in a 5th/6th grade combination class together. Neil has looked out for research that would help Ryan for all of these years. He didn’t know about Ian until recently. This stem cell treatment seemed to hold a lot of promise and they all decided to try it. In August of ’08 Ryan came to Costa Rica to begin. We all held our breaths for months waiting to see if it might work. Within the first few months Ryan gained 20 pounds and a half inch of muscle all around. He was able to move his arms more and to support his trunk sitting up.
We have experienced huge ups and downs this year. Charlie, who was Ian’s inseparable buddy from MDA camp from the age of 5 and Charlie 6 died around Christmas of ’07. His death was sudden from breathing complications. That next summer of ’08 we learned that Ian’s ability to move his diaphragm and thus breathe was barely registering. He had also lost more weight than he could afford. It was taking him too long to get enough calories because his ability to swallow was becoming so weak. Grief, for me was a constant companion as well as the fear of how suddenly Charlie had died. In November, Ian’s heart rate was out of control as was his anxiety. His stomach had been hurting since the summer and the doctors couldn’t help him. One day Ian told me that he did not want to go on living if it meant living with such pain. I took off the next week from work not knowing if I would ever go back. We discussed what a blessing we had been given in sharing our life with Ian and how much we loved him and that if he needed to, we could say goodbye. Somehow he rallied and got new medication and the constant stomach problems went away. An antidepressant broke the cycle of the anxiety feeding the stomach pain and the stomach pain feeding the anxiety. We also found a new doctor who said that there were now better methods than a tracheotomy. The tracheotomy was “off the table.’
Ryan went back to Costa Rica again and we began talking to Neil. Neil said that he would donate his services for Ian to have the treatment. I cannot begin to say how grateful I was and am for this amazing gift of a chance.
It has been a little embarrassing as Neil tells the other participants stories about me. People who meet me now would have no idea of where I have come from and I usually try to keep it that way. Stories I would rather leave behind--- “Are you the gal from Wichita? Neil has told us about you.” They laugh and I smile. Thank God I know Neil and that we formed such a connection in the 7th grade.
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