Well, today has been a day of information gathering, meetings and processing another "new normal". Tuesday Alex will have outpatient surgery to swap his mediport for a Brovia (external) port. Wednesday he will return to the Radiation Oncology clinic to be fitted for his mask, catscan and perhaps another MRI. Radiation treatments will start the following week.
I went to the office today and it was harder than I thought to talk about Alex there. Again, this has all happened so fast. As I told my boss, as of Monday afternoon we thought Alex was on his way to wholeness and well-being. Anyway, everyone was very supportive and I have been given a month of leave to be with Alex and Zoe and take care of things. I am so appreciative to everyone at the office. The bosses for giving the time off and the staff for filling in my shoes and the judges for their continued support and understanding. Thank you all, I really do miss being around such wonderful people.
I'm exhausted mentally and physically. I still don't feel well and sleep is not that sound either since Alex is choking more and wakes up screaming. He has become very snuggly lately. He is not keen on the mask concept. He said he did not want to wear the mask because he needs to eat to keep his weight up. We then explained that he did not have to wear the mask anywhere except during radiation. He felt better about that, but you could see his anxiety level raising until he and Zoe started playing tag around the clinic's exam room.
Okay, well it is bath night. I can't remember the last time we bathed the kids. Oops!
God bless.
G
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3 comments:
Hiya guys!
My brother Scott was showing me pictures of the Disney trip and I'm so glad you all had a great time. You sure deserve it!! I'm saying a prayer for you every day and sending happy thoughts your way. Much love, Melinda
Sending you thoughts and prayers.
Shantell Gutierrez
Gwen and Steve -
I recently checked your blog to see how Alex's trip to Disney went and was shocked and deeply saddened to read the new developments. I have kept in my mind the post about the tumor shrinking from a golf ball size to a walnut size and I assumed that was an indication othat the treatment was really working. I am truly so sorry to hear about the recent developments and my thoughts and prayers are with your family and especially with Alex. I know that Children's is amazing and you are receiving the best care in the Rockies, but with the doctor's comment that he had not seen this behavior with this type of tumor, I wonder if he knows of any trials or protocols at another institution (St. Judes Children's Hospital, MD Andersen Children's Cancer Center or Memorial Sloan Kettering) that might be helpful for Alex. I will continue to think positive thoughts for you and Alex as he starts his new regime.
With love,
Stephanie Blue (Connor's mom)
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