Holy Moly

Holy Moly is all I can come up with right now. I am exhausted! In good ways and in bad! This continues to be such a ride... I am hoping for some consistency with my emotions but am probably not going to get that any time soon.

We found out a few weeks ago that Dylan's Make a Wish trip has been granted! His wish grantors, Dana and Jon, went through a great deal to put on the cutest assembly ever at Dylan's school featuring lots of our cute friends and neighbors as pirates!!! At first he was a little concerned at the attention he was receiving but after some convincing by Daniel Coates (Denver Broncos player :) ) Dylan went up on the stage to officially become the newest pirate and receive the news about Disney World! We leave in 2 weeks from today and our whole family gets to go! All of the kids can't wait! It will definitely be a much needed change of scene for all of us. While I am so overly grateful to Make a Wish for providing our family with this amazing trip, it is hard to believe that we are a Make a Wish family... I have seen these families for as long as I can remember but now we are one of them. Everything is so different to me now. My perspective has completely changed. I am so grateful that there are organizations like this out there to provide our family with the opportunity to make these important memories that will last us for forever.

Dyl continues to improve, still tired and the steroids aren't super fun. But I am happy with his speech and walking abilities for now. He is one of my very favorite people to be around, I think my sarcasm has worn off on him! He continues to be my little parasite and can't stand it if I am not around. He has his Primary's appointment tomorrow so we'll see how his counts are and find out when his next MRI is. At this point I am just living day by day.

Maybe one day I'll get a nap or a full night's rest. I am sure that is pretty unrealistic to think it's even a possibility with our circumstances! Life continues to be crazy around the Shaw house and every body continues to fight for attention! We are trying our best to divvy it out evenly but some certainly demand more then others... I often find myself dreaming of our life before all of this and I want to go back. But then I don't. It's a constant battle within myself because I have learned so much through it all that I know I wouldn't have otherwise. I am so grateful for my family, friends and the gospel. They all continue to help me plug away. It frequently feels like Groundhog Day! I am ready for better weather and the outdoors! Bring on Summer! Hopefully we will be able to have some great times with good health!

I know this isn't the most amazing post, I am really tired but feel like I need to thank every one for the continued love and support. We even got letters from Jimmer Fredette's mother, Kay. She is one sweet woman! It is crazy to know how many people are concerned about our little family. Thank you so much for it all. We truly feel loved... :)

Fun Movie Day!

In June, Walker Cinemas is doing a fun kid Movie Date with Dylan.  Click on the flyer to see the details!  A great excuse to go to see Cars 2! :)  Although I know it is hard for Mandy,  Ryan, AND Dylan to accept people wanting to help, serve, and pull people together...I keep telling Mandy...if you don't allow people to serve you..you are actually taking blessings away from them.  It is just as important for us to accept service from those who want to do something, as it is for us to serve others.

  PLUS who doesn't need all the love and support in the world when they have a sick child?  

Thank you for continually reaching out to my sister and her family! 

Chelsea

When it rains it pours!

Usually that phrase is used when bad things pile up on you but in our case it is just the opposite. The last week has been so filled with love and support for our family that we feel overwhelmed by it all. The number of people that have donated their time and sacrificed on our behalf is growing beyond anything we could have imagined. From our dear friends who spear headed Dancing 4 Dylan (Michelle, Nikki, Chelsea) to those who put together the 5k on Saturday (Dakota, Kyle, Darcee, Shauna) and to countless others that donated their time at both events, all we can say is Thank You from the bottom of our hearts!! We know you all gave up many hours with your own families to help out ours and we will be forever grateful to you and will strive to pay it forward and in return when and if the occasion ever calls for it. The shear number of people that came out to support us last week was amazing, from friends, family, co-workers, past bosses and tons of people we didn't even know personally, it was truly a sight to see that many people rallied around us.

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

The 5K Race was wonderful!!!

Thanks so much to all of you that came and supported Dylan in the 5K race yesterday - it was amazing!!! You will all be blessed for all of your love and support!!!

There were several things left over - 2 children's t-shirts and a 3 children's jackets and a small garbage can with a lid. We left them at our son Jeff's home in Pleasant View. If you have lost anything please contact jeffshaunashaw@msn.com.

Warrior Run, a great success!

Another heartwarming event was held for Dylan. What a wonderful feeling to participate in such a great race. So many wonderful people helped, ran, walked, and supported our special Shaw family. I continue to be amazed at the goodness of people, and still have a hard time putting into words how grateful I am for all of you.

~Grammy Mitzi

THANK YOU!!!!!

I am so apprehensive to even post anything right now because I am SO overwhelmed with emotion. To all of you who donated, danced, helped or just came to support us at "Dancing 4 Dylan"... THANK YOU. THANK YOU. THANK YOU. What an amazing event. It was unlike anything I have ever experienced before. I am staring blankly at my screen because I don't even know how to begin to thank everyone. I (meaning my entire family, I just happen to be typing! :)) will be eternally grateful to everyone. I mean everyone. The turnout was 100 times what I expected and I am so completely overwhelmed. That is literally the only word I can come up with!!! This night will be burned into my brain forever! It was my 8th favorite event of my life! (Obviously my children and my marriage coming in as the top 7!) If there is anything to be learned from this experience it is, no matter how dark a situation may seem, there is always a light to be found. I don't know if this makes any sense because I am pretty sure I just made that up... But I am thankful for this trial. Not thankful for the fact that my child has to suffer and has to go through this because I wouldn't wish it on a soul- But it is SO amazing to see the goodness that is out there! I (once again, meaning WE) have never, in all of our lives combined, felt such an outpouring of love. Thank you for sharing this journey with us. We know how hard it is to make yourself vulnerable when you get close to our situation because there is much sadness involved. But there is SO much goodness and love too! Thank you again to all of you who have chosen to be a part of this experience with us. We are all eternally connected. I hope that someday soon we will be able to pay forward the love, kindness and support that has been shown to us. :)

DANCING 4 DYLAN!!!

TODAY IS THE DAY!!!!

   We have been hard at work for weeks getting this thing ready to go.  It will surely be an unforgettable night.  Please come!!  We are so excited!!!  Thank you to EVERYONE who has made this night possible and contributed in any way.  The list is FAR too long to even attempt to write everyone.  WE LOVE YOU.

Here are just a few big ticket silent auction items......

  Treadmill. Home Theater System. 4 night stay in St. George. Guitar. JIMMER signed Jersey....

and SOOOO many more!!  

*****SO even if you aren't a lover of dancing....it will be worth coming!  :)  *****