The January 13 St. Jude trip has been canceled. It was an easy decision after discussing with our local nurse and doctor. After calling St. Jude we were reassured of our decision, and feel relived they feel the same and support our decision. Judging from symptoms the results would be the same. There is no MRI needed; it would not make any difference to the study. No MRI, no more testing, and Mason just smiled. We are very thankful that St. Jude is still dedicated to Mason. Although we are miles away, St. Jude continues to help in every way possible. They are even sending supplies for Mason's comfort. We are forever grateful to this amazing hospital and staff.
Another update, after yesterday's nurse visit Mason started steroids. It was hard on both mom and him. He decided to try for one week to see if symptoms improve. Of course the first thing he wants to change is his talking. After 2 days he can tell a difference; the drooling is not as bothersome. I have not mentioned this before but, drooling is one of DIPG symptoms. Balance is still off; as mom accidentally dropped him on the floor; and was very relieved to hear him laugh. Thank goodness I grabbed his shirt to slow down the fall.
There are some side effects of steroids, one is it brings down the body's immune system. We now have a sign on our door: Please WASH hands upon entering and No Visitors after 24 hour of fever or cough. " Poor Maverick thinks we are trying to keep everyone away. Really we love short visits, just please call in advance, as visits tire Mason (me too!) Another side effect is hunger and yes we can tell. For lunch: 2 tacos, (thanks neighbor for refried beans), a bowl of cereal, and a Pop Tart, and lots of chocolate milk. And there is the possibility of mood change and irritability. I did remind Mason he might become moody and a little snippy. His response, "Mom when I am mad at you, there is always a good reason" How can I not smile at that? And for all those times I bite my tongue and want to yell obscenities; Mason smiles. If we could all handle life as easy. You teach me so much.
Thank you for keeping Mason and our family in your prayers; we are not alone; please say a prayer for all the children that are battling DIPG. And to Belen and family we pray for you too, please keep in touch.
Many Links of Mason
- Mason's Legacy Continues December 2011
- Make a Difference for Mason-facebook
- Lights, Stripes, and SNOW-facebook
- Heartland Lions Eye Bank Article
- Brookridge BBQ video-facebook (2010)
- Magic of Christmas-Youtube
- 2010 Summer Memories-Youtube
- Channel 9 News Valentines for Mason
- Channel 41 Valentines for Mason
- Fox 4 News Keeping Mason's Memory Alive
- Dynamite Video - Youtube