Dylan is doing ok, last week we were very worried the doctors would order a shunt be put in his head to drain the fluid in his ventricles but luckily they were swollen but not enough to merit the shunt. He struggles to walk and his speech was getting slurred so they put him back on a higher dose of steroids to counter act the swelling. They did a CAT scan on Wednesday and found the tumor had actually shrunk a little but the swelling around the area and in his brain is still pushing on the nerves in his brain stem and that's why the symptoms aren't diminishing like we would hope. The doctors said it can take up to 4 weeks post radiation to have the swelling completely subside and the tumor to shrink the most it will so we're still hoping and praying that it will happen and he'll be able to have a fun summer! On Thursday he also got to meet his favorite basketball player, Jimmer Fredette on the studio 5 morning show. A big thank you to Brooke Walker for making that happen for him. Jimmer was awesome with him and signed a few items and talked to him for a couple minutes and Dylan was so nervous to meet him he barely talked but went on and on afterwards about it. While I can't believe my 9 year old has a 'bucket' list, he has been able to do some pretty amazing things and meet some incredible people and his influence is being felt by so many people. I can't tell you how many people last week came up to me and thanked ME for allowing THEM to be there and donate or participate. I've never been very good and accepting help, I'm a man and I don't ask for directions let alone ask someone to help me with something I am fully capable of doing myself. And while it is difficult for me to accept the help, I realize that the people giving it gain just as much or more than I do from receiving it. I feel the same when I donate my time to others and so we must allow others those same blessings of service towards us. We can never say it enough or show all of you how thankful we are and there have been so many help out that we can't keep track and personally visit each of you so I apologize it has to be in mass form but to all of you who have helped or donated to us; THANK YOU AGAIN AND AGAIN!!! The only way we can really show our appreciation is to pay it forward when it's our turn to help out and trust us, we will. We will continue to fight for a voice for the some 200 kids a year who are diagnosed with DIPG and we will make a difference in the fight against cancer in Dylan's honor so know that all your help is going towards this worthy cause.
We have a bunch of pictures from last week that we'll post soon to chronicle this crazy journey we're on. We love you all and hope and pray for nothing short of miracles in your lives for creating miracles in ours.
Ryan-the dad
My name is Linda, I belong to a forum http://forum.make-the-cut.com/ All crafts.I read about Dylan and just had to do something for him.My cousin just passed away from this so I know a little what your family is going thru.
ReplyDeleteWe have a challenge up for making cards for Dylan, and have a member who lives close by and would like to deliver the cards to him or yourself. The challenge is for 2 weeks,we hope to fill a box and put a smile on his face.Please contact me if this is ok with you.
llpvep@comcast.net
Linda