Sunday, April 10, 2011

The Latest

Well, today I had to shave Dylan's head. They told us in the beginning he might lose his hair in the back and it has been shedding over the last few days in patches. I now wish I would have paid a little better attention in Cosmetology school when they were teaching us men's cuts, especially a fade! Let's just say we may need a barber to do a little blending. :) It makes him feel a little insecure. He thinks he looks "stupid" with it. I personally think he is the cutest thing no matter how things change on him. He still is a bit bothered by the fact that he can't get his smile up on his right side and now his right eye is cross-eyed. The human body amazes me. It can go through so much and make it through and yet it is so vulnerable at the same time. Every little physical change that occurs makes me wonder how I would feel if it were me. The thing that is so hard for him is how fast it has all happened. It takes him a minute to get use to the changes, at times they are hard for him to accept but all in all he stays tough. What a cool little man I have.

We decided to switch his radiation to the morning and I think it is working better for him. That way he doesn't dread it all day, he gets home early enough to take his nap and is refreshed when friends get home from school. For a while he kind of avoided them. I think it was due to a few things... I think at first he felt weird. Also, after radiation he is always so tired and pretty cranky. He was getting home around 4:30 or 5:00 p.m. when every one was outside playing and I think it bothered him. This last week since we changed his time he wanted to play with his friends twice this week! I was thrilled! I also got him to go to an hour of school with me on Tues. That made me happy too. We have also arranged for a tudor to come to the house a few days a week to work on school work with him. I want things to be as normal and structured as possible for him. One thing that remains the same is the bickering between the children. That helps to make ME feel normal! Haha.

Well my husband got a new calling in church. One that I know will truly bless our family. I feel so strongly that we are constantly being watched over. I am so grateful for the strength I continue to receive from my Heavenly Father. Sometimes my mind starts to wander and worry about the future but I am able to quickly retrieve those undesirable thoughts and focus on the now. Dylan has been shown so much love by so many people, it has touched me to the core. I can't believe the lengths people have gone to in order to make him feel special. He told me that sometimes people treat him like he is the President! Lol. Thank you from the bottom of my heart to everyone that has supported him. From the texts to the comments left on this blog, the treats, the random visits, the cards, the packages, the prizes, the letters... the list goes on and on! I feel the same as Heavenly Father does in Matthew 25, vs 40 when he says, "in as much as ye have done it unto one of the least of these my brethren, ye have done it unto me."
Thank you again for all of the love that has been shown to all of us.

We are still pursuing additional treatment options. We will constantly be searching for anything that will help! You can't put a price on a life. Especially one of your own children. He has been so easy to love and take care of. He has taught me so much in such a short period of time. I am so grateful for every minute of every day I get to spend with my family. If there is anything I can pass on to others, it is to not take those minutes and days for granted. You think it will never be you but you never know. I never thought it would be us. But as crazy as it sounds I don't think I would change it. It has made me appreciate the simple things in life. :)


  1. Mandy,
    All of these posts inspire me and Dylan is such a trooper..
    I would be happy to fade his haircut in for you. Let me know when and where and I'll be there!!

    Thinking of you guys EVERY day.
    Karen Hurd

  2. You. Are. Amazing.

    So proud to call you my friend!

  3. Hello Mandy,
    I'm not sure if I've reached out to you, yet. If I have, please forgive me - I don't mean to stalk you! :)

    We seem to know many people in common - Michelle Falk, Carol Huff, and my mother met either your mother or MIL at church.

    Anyhow, my son Matt, age 12, also has a brain tumor. We've been the rounds with chemotherapy, 3 surgeries, radiation, etc.... I believe Matt's is a different pathology (although still a type of glioma), but his has also spread to his brainstem and throughout his spine.

    After 4 years of treatment, we felt like we were at a point where PCMC couldn't offer Matt any more options or any hope and so about 6 months ago transferred his care to St.Jude Children's Research Hospital in Memphis.

    The quality of care is beyond anything I could have ever imagined. There is an entire clinic in the hospital devoted only to kids with brain and spinal tumors. The treatment is cutting edge. They also don't charge a single cent. They pay for our travel back and forth, our food and lodging while we are there, all of Matt's medications, and all of his tests and scans. They do bill insurance, but anything that is not covered, we do not pay - including co-pays.

    I mention this just because I know how cost prohibitive it can be to get other opinions or to consider receiving treatment elsewhere.

    Please email me or call me if you are at all considering St.Jude. I feel like it has been the right choice for our family and for Matt.

    Best wishes! Our family is going to try to attend the dancing for Dylan fundraiser. Perhaps I can meet you then.

    Mom to Matt, 12

  4. Me and my family will attend the Dancing for Dylan fundraiser. I also have a little surprise for you and your family it isnt much but it could help a little bit :D Stay Brave I miss u tons

    - Delany Stettler

  5. Hi Mandy, you know that I don't have much in the way of talent with hair, but I am pretty good at doing fades! I'd be happy to help :-). Tell Dylan that some of the toughest men in the world wear fades, that is the hair cut of U.S. Marines :-)
    Love to all of you,

  6. I'm Hailee and Jerome Murray's Mom. We live in the Wilson 2nd Ward. Just wanted you to know, that there are lots of people praying for your little guy and your family, that don't know you personally. But I've heard so much about all of you, especially your little Dyland. And he continues to be in our daily prayers! We have heard what an amazing family you are and are so grateful for your example to all of us--even those you don't know!!!

  7. Hey Mandy, this is Megan (Schooley) Keyes. You and your family are in our prayers and if there is anything that we can do to help let us know. I also told Chelsea about Reliv a product that I sell that has helped many people overcome lots of illnesses includeing cancers and brain tumors. It's just a whole food substance and if anything, helps the body to function at its fullest to help take in any other treatment you choose to pursue. My whole family takes it including my daughter. Let me know if you want any more information and I would be happy to let you know more about it. Love you guys!!

  8. Hi Mandy! Just want you to know all of us at The Pointe are praying for you and your sweet family every day. We love you and send our thoughts and best wishes your way. We have always thought you were amazing, and love you so much!
    Darcey Wilde