This is the second time that wireless internet has zapped my update before I posted it. This time I am going to write in word so that nothing is lost. I began this post on Wednesday afternoon, and now it is Friday evening and I am just finishing it!!! We are so busy here, and with the constant care and attention Sophie requires, finding a time when I feel like doing something other than trying to catch a few hours of sleep is rare.
This will be my last post on the Care Pages website. Future posts (assuming that I can maintain an internet connection) will be on Sophie’s new website:
The website will be easier to access and will allow us to provide relevant information and links regarding Sophie’s brainstem glioma. Your prayers and comments mean the world to us. It is so uplifting to get back to our room after a long and often depressing day at the hospital and read your thoughts and prayers. Keep them coming and don’t hesitate to share Sophie’s site with others. We are overwhelmed at the number of people from all across the country who are praying for our little girl.
We also would like to thank those of you who are sending cards and gifts. Sophie has enjoyed receiving things at the hospital and we are ever so grateful for the kind words. I would like to think that we will send thank you cards sometime soon, but probably not in the very near future. I also would like to say that I am not able to access my email remotely...just can’t get it to work, so if you have been emailing me, that is why I have not been responding. And although I appreciate the phone calls, I haven’t been too good about returning them, simply because I have a hard time finding the time. I do however appreciate those of you who are thinking of me (us).
Sophie is taking a little nap which affords me the time to update. Wednesday was the first day she slept during the day. We think she must be exhausted since she doesn’t sleep well at night and has been getting up rather early...like 4:00am on Wednesday! Wednesday she had an MRI at 7:45am. We had to be at the hospital by 6:30am in order to prep for the sedation, so I guess it wasn’t that bad that Sophie was up so early except for the fact that she really wanted to eat and drink and couldn’t after midnight.
I hate that Sophie will have to be sedated every day for the next 6 weeks (once radiation begins). First, she can’t eat 8 hours prior to radiation, and for a kid on steroids, that is torture. Second, she is so helpless when she comes out of sedation. It really is sad.
1 comment:
Dear Marc and Emily,
My friends have a son that was brushing his teeth and found a "sore" on one of his molars. He showed his mother who made an appointment with the Dentist three days later. By the time they got to the dentist office, the family determined that it was obviously abscessed. The dentist diagnosed it as a tumor. Which was now the size of a golf ball. They took him to the hospital and ran tests, which took a couple of days. By this time it was the size of a baseball. The child was sent to the James Cancer Clinic in Cincinnatti. It was said that at that rate of growth, the doctors would probably not get it all. The whole time, my church was praying for a miracle such as only God can do. As the surgery was taking place, his father and mother stepped outside expecting the worst. Then a group of motorcycles pulled into the hopital ridden by a bunch of ugly, bearded roughnecks. The parents started to leave and the "Gang" approached them and said that they were traveling south and "God" had told them to go to the hospital to pray and assist somebody in need. Think about it, motorcycles, gang, hard to talk between roaring engines, but that all felt the same need. They explained that they were all Christians and wanted to know what they could do to help my friends. They were so distraught that they could only mutter the words "please pray". The entire group joined hands and praised God and prayed for a miracle. After not getting much encouragement from the surgeons, this was about all they had that was positive. After the surgery, the surgeon stated that they had to break his upper jaw, remove his teeth, break his skull and get into his head. Then the surgeon stated that he did surgeries a long time and had never experienced anything like this. The tumor had a "hard shell" around it as if to protect the rest of his body from the cancer. Andy is now 17 and impresses all his friends by sticking his finger in his mouth and then pushes his finger out of his nose.... Gross! Yes! A blessing! By all means!! A miracle from God! Praise Him!
My love and prayers are with you all.
RD
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