Ollie's MRI Results - December

Wednesday, December 15, 2010

Today's MRI was particularly nerve racking for me because I've seen an increase in symptoms the past week and a half. His double vision has never gone away and so we are used to seeing him wear his eye patch on a daily basis. It's his 'new normal'. He looks like he is getting weaker on the left side of his body again. I noticed as he was walking up some stairs that he was having more trouble lifting his left foot up on the stair. I have also noticed that at times, not often, that he'll be talking or laughing and a spit globule will fly out and just hang out on his lip, like a string of spit. We usually laugh about it while he quickly wipes it away, but I know that drooling can also be a sign of them forgetting how to swallow. So... with that being said -- symptoms reappearing -- as well as us coming upon his year diagnosis anniversary, December 23, 2009, I was trying to prepare for the bad news that there was progression (tumor starting to grow again).

We drove an hour and a half down to Iowa City and he had his MRI first. Then we went to the Radiology Department to see his doctor and speak with him about what he saw on the scan. He came in and said that there was no indication of progression, that it looked the same as his last scan in September! I was AMAZED for a few minutes and then back to the thoughts of 'how long will this luck last'? 'Why are his symptoms reappearing?' He'll be having his next MRI on March 2, along with a Pediatric Swallow Study to see how his throat and everything are working. (Jaren had one when we were figuring out why he hardly eats.) IF his symptoms really get a lot worse, then we need to call the doctor and let him know. IF and WHEN he starts to progress, then we talked about possibly reirradiation at a lower dose than his first round. From the DIPG support group there have been several kids that have been reirradiated and are enjoying a second honeymoon period, free from symptoms that hinder normal activity.

We were very excited that our doctor feels like this is something that he can do. We know that it is not a cure, but it will allow us more time to spend with him, if that is Heavenly Father's will. It is ALL up to Him... We are counting our blessings and realizing how important our loved ones are and continually acknowledging the Lord's hand in it ALL...