Sunday, March 27, 2011
Alumni Tournament Pictures
Both families pictured with the 2 teams playing for the championship.
The Shaw family
Keith Mecham, the basketball coach at Box Elder, gave Dylan this awesome Bee's basketball. Dylan was so cute and said, "once I get my balance back I'll be shooting a lot of hoops with this basketball."
During a break in games I took my girls, Sydnee and Madelyn, on a little date with Dawson and Dylan to Texas Roadhouse (Dylan's favorite restaurant). We all had so much fun and the conversation was nonstop. It made me smile! Grammy had taken Dylan to Texas Roadhouse for his birthday last year and I guess ate "A LOT" of the peanuts. He was convinced that he needed to bring some back to her and worried about it until we got her a bag. Just an example of how cute and thoughtful he is!
I am also so grateful for the incredible support and love that has been given! The definition of charity is the pure love of Christ. We have all felt of this love by numerous people; friends, family, neighbors, and even strangers.
Thank you is not a strong enough word for the gratitude that we feel!
Lindsay (Mandy's sister)
Spreading Goodness
Today on my Relief Society newsletter there was a quote from President Hinkley. It said..
"You are good. But it is not enough to just be good. You must be good for something. You must contribute good to the world. The world must be a better place for your presence. And the good that is in you must be spread to others."
It was so appropriate after this week. So much goodness has been given to us. My family (The Jeppesens) and the Shaws are both from Brigham City. We all attended Box Elder High School...and all the Shaw boys played basketball for the Bees. Every year a group of men put on a Todd Morrison Alumni Tournament. All of the proceeds from the event go to chosen families in need. Some of you may already know, but the Shaws were one of the two families this year. The other family was the Friedli's. If you have't heard their story..grab a box of tissues and read their blog. What a sweet family.
The event started on Monday and Tuesday night with benefit dinners at Sonora Grill in Ogden. Mandy mentioned this in her last post, and thanked so many people for coming. It was truly overwhelming watching so many of our family and friends walk into the restaurant to show their love and support. Here are just a few pictures from the night...
Dylan and Uncle Trevor
Dylan with Grammy and Papa
Dylan and Mom
Ben Huff, one of the men who put on the event. THANK YOU!!
Dylan was so happy to see his cancer buddy Cyndi there!
The Friedli's & the Shaws
Dylan LOVED meeting everyone who came. He was such a good sport to walk around, shake hands & talk to everyone.
Dylan & Lizzy. Lizzy's family were the recipients last year. She also had a brain tumor & is a darling brave little girl.
I wish I had some pictures AND video from last night at the actual basketball tournament. If anyone has some will you email them to me?? After they introduced the families, the fathers both took a minute to say thank you. I am pretty sure there wasn't a person there not in tears. What a special night to be a part of. You are all SO GOOD! Not just good, but doing good. You have blessed our lives with love & hope. Your support and kindness means more than you will ever know. Dylan was so brave and even took the microphone to thank everyone for coming, with tears streaming down his little cheeks. The world IS a better place because of all your love and service for these two families. I am so grateful I was able to watch and feel the love last night. THANK YOU to everyone who played a part in ANY way.
Alumni Tournament Weekend
Yesterday concluded the 18th annual Todd Morrison Alumni Tournament, where past years of graduates gather at Box Elder High School to relive the glory days of their high school youth in a basketball tournament! Unfortunately that 'glory' is supported by more milligrams of Ibuprofen than I believe the human body should safely consume in two days and more knee and ankle braces per capita than anywhere in America. I think next year Don Joy Ortho and Motrin should become the official sponsors! The whole purpose of this tournament is to raise money for a child or family going through a difficult medical time and as we've mentioned before on this blog, we were selected as one of two recipients. The other being Dakota Friedli, their blog is wonderful and is worth following as well. What a beautiful little kid Dakota is and while is body is still very limited in movement, his bright eyes stare at you with all the wonder of youth. His parents are great and rightfully deserved to have been this year's sole recipient of the alumni tournament proceeds but through the goodness of their hearts and their charity they allowed us to be co-recipients with them and for that, we say Thank You to them!
I would like to say that my year (1993) was victorious but alas we were far from it (yet again) winning one game and losing two (both in overtime and both due to the refs blowing calls that would have allowed us to win the game!!) Let's not mention the part where I personally missed the game winning shot in one game but instead focus on the ineptitude of the officiating, that's more fun anyway. Mandy's year (1996) won their bracket championship as did my older brother Jeff's year (1986), which is my year's bracket as well but sadly we've never come close to winning that thing. There are 3 different brackets as to protect the old and decrepit from having to play the younger teams, say from 2008 that can still run and jump and have a BMI under 30 (man I hate those kids). My brain still thinks I belong in that category but sadly, this 36 yr old body begs to differ and today, Man is it begging!!
But it was great fun to see old friends that I haven't seen for a long time but it was even more fun to see my little Dylan interacting with so many people (most of whom he'd never met in his life). They would come and sit by him and he would talk to them as if they were old friends and genuinely be interested in getting to know them. So many people, afterwards, commented on how impressed they were with his attitude and sense of humor (ask him about his science project of a cup dirt by Brian Reagan and you'll laugh historically as he recites it). I can't thank all the people there enough for donating to the tournament. This year they had a silent auction wherein people/companies donated items that were bid on and I couldn't believe some of the items that were donated; 14th row Jazz tickets from Bank of Utah, a bunch of girly smelly stuff from one of Mandy's high school buddies Kelly and 3 beautiful paintings from a good friend of mine Russell Case. If you haven't heard of Russell Case, he's one of the most talented artists I know and his artwork (mostly of outdoor, fishing, cowboy, and landscape scenes is truly beautiful). All the other items were great too and I don't mean to single anyone out but rather to give a description of the level and value of things that people donated to the cause.
At half time of the young bracket championship game, they brought both us and the Friedli's to center court and Trek Lyons (founder of the alumni tournament) said a few words, thanked everyone for coming and introduced the families. Then he gave us the microphone to address the crowd. I was overwhelmed with emotion standing there looking into the crowd, seeing people I've known my whole life; a school teacher, a seminary teacher, a former boss, our son's pediatrician and many people who have loved and supported me and helped me become the man I am today (it truly does take a community to raise a child). I couldn't hold back the tears as I thanked them for their generosity. I've played in the alumni tournament since it's inception and our year has always donated money because it truly is for a good cause but to be on the receiving end was a place I never thought I'd be! It gave a whole new meaning to community and even though I no longer live in Brigham City, it will always be my home and where I will always say I'm proud to be from. Dylan kept saying he couldn't believe how many people would come to support him, he's still overwhelmed that so many people care and to me, as a father, it gives me hope for humanity. There is so much that is evil and bad in this world and it is easy to give into despair and depression and allow ourselves to give up because it is just too hard. When I feel this way, I always remember 2 Kings 6:15-17 When Elisha the prophet of Israel was surrounded by the Syrians, his servant asked how they could defeat such an army surrounding their city and Elisha said 'Fear not: for they that be with us are more than they that be with them.' Yes, there is evil and wickedness in this world but there is also SO much goodness and people going about doing good. This weekend was full of those kind of people. One of the greatest men I know, Wendel Hess (a bishop and neighbor from my youth) who just recently passed away was one of those men. He simply went about doing good and not looking for public recognition for it. That is the kind of man I now strive to be. From the bottom of our hearts, we want to thank all those who participated and donated to the alumni tournament. The proceeds will allow us to accomplish things that before were not possible. What an experience, one I will never forget!
Ryan-the Dad
Wednesday, March 23, 2011
Thank goodness for my GPS
Do you use a gps too?? I hope so. For some reason I have a HORRIBLE sense of direction.....I mean, I get turned around in our Church house every week. I don't pay very much attention when I'm going places, especially if I am not the one driving. Lucky for me, my trusty gps can tell me just where to go! I plug in the address and I am off!
Last night I was heading to Salt Lake for a Drill Team performance. I had never been to Juan Diego before so I typed the address in my gps. As I was driving on the freeway the voice told me many times to "stay left" when approaching an exit I wasn't to take. So, I would stay left, and continue on. After I had been driving for a while, one of my favorite songs came on the radio. I turned it up and enjoyed the little bit of sunshine there was today. Muffled by the sound of the radio I heard my gps give me some kind of instruction.....only I didn't quite get the message. I couldn't hear it because my music was too loud. I panicked and hoped I hadn't missed my exit. At that point a light bulb switched in my head......
WE HAVE ALL BEEN GIVEN OUR OWN GPS'S on EARTH! It tells us when we need to avoid certain things or places, it lets us know when we need to turn around, and even when our friends or family are in need of something. Did you know Mandy's "GPS" told her there was something going on with Dylan? Ryan's too. They were both being prompted to see more doctors and figure out what was going on, even with Dylan showing very little symptoms at the time. The good part is that they listened. How often is our "music too loud" to hear the promptings? How often do we miss our exits, or turn the wrong way, because we can't hear the instructions?
Luckily last night, I didn't miss my exit. I still had another chance to take the right one... but I learned just how important it is for me to be able to hear. To be prepared to hear, and not let the excitement of my favorite songs make me forget there is someone trying to lead and guide me. I am so thankful for that wonderful gift we have been given.
PS- Did you know that Dylan has been REALLY funny lately?!! Sunday was a rough day for me emotionally. It was hard for me to teach the 9 year olds in primary about prayer, and not cry. It was even more hard for me to be at my parents with all the kids playing downstairs and sweet Dylan just sitting on the couch upstairs. It was one of those days I just wanted to crawl back into bed and cry. Well.....I sat next to Dylan on the couch and he proceeded to tell me the play by play of EVERY State Farm commercial that is currently playing on tv. Then every once in a while he'd sing very loudly, " LIKE A GOOD NEIGHBOR, STATE FARM IS THERE!!" I could not help but laugh, really hard. Two days later it is still making me laugh and smile. I love that boy!!
Last night I was heading to Salt Lake for a Drill Team performance. I had never been to Juan Diego before so I typed the address in my gps. As I was driving on the freeway the voice told me many times to "stay left" when approaching an exit I wasn't to take. So, I would stay left, and continue on. After I had been driving for a while, one of my favorite songs came on the radio. I turned it up and enjoyed the little bit of sunshine there was today. Muffled by the sound of the radio I heard my gps give me some kind of instruction.....only I didn't quite get the message. I couldn't hear it because my music was too loud. I panicked and hoped I hadn't missed my exit. At that point a light bulb switched in my head......
WE HAVE ALL BEEN GIVEN OUR OWN GPS'S on EARTH! It tells us when we need to avoid certain things or places, it lets us know when we need to turn around, and even when our friends or family are in need of something. Did you know Mandy's "GPS" told her there was something going on with Dylan? Ryan's too. They were both being prompted to see more doctors and figure out what was going on, even with Dylan showing very little symptoms at the time. The good part is that they listened. How often is our "music too loud" to hear the promptings? How often do we miss our exits, or turn the wrong way, because we can't hear the instructions?
Luckily last night, I didn't miss my exit. I still had another chance to take the right one... but I learned just how important it is for me to be able to hear. To be prepared to hear, and not let the excitement of my favorite songs make me forget there is someone trying to lead and guide me. I am so thankful for that wonderful gift we have been given.
PS- Did you know that Dylan has been REALLY funny lately?!! Sunday was a rough day for me emotionally. It was hard for me to teach the 9 year olds in primary about prayer, and not cry. It was even more hard for me to be at my parents with all the kids playing downstairs and sweet Dylan just sitting on the couch upstairs. It was one of those days I just wanted to crawl back into bed and cry. Well.....I sat next to Dylan on the couch and he proceeded to tell me the play by play of EVERY State Farm commercial that is currently playing on tv. Then every once in a while he'd sing very loudly, " LIKE A GOOD NEIGHBOR, STATE FARM IS THERE!!" I could not help but laugh, really hard. Two days later it is still making me laugh and smile. I love that boy!!
Tuesday, March 22, 2011
WOW.
Well, what I really would like to do is write a 10 page essay listing everyone by name who I would like to thank. However, I know I would accidentally forget someone... So, at this point, all I have to say is WOW. WOW to the endless amount of texts and calls we continue to receive daily just to let us know they are thinking of us and we are in their prayers. WOW to the visitors we receive daily just dropping by see how we are doing and bring a treat or two. (P.S. Still trying to lose the baby weight... :) ) WOW to my husband's co-workers and bosses that continue to support him and do all they can to help make things easier for him and us. WOW to my employees who are doing their best at running my business the way I would have it. WOW to our ward and neighborhood who continue to bring us dinners and volunteer their services to us. WOW to our families who are helping us daily whether it is taking our kids or helping at the house. WOW to our friends who are planning these amazing events to help lighten our load. WOW to our friends who traveled great distances to support us, it is amazing to see how long true friendships really last. WOW to our Heavenly Father who continues sending blessings our way. And finally, WOW to my little angel Dylan who reminds me every day that if he can go through this and still have a smile on his face at the end of the day, then so can I...
One GREAT DAY!!
May I share with you the wonderful day I had yesterday taking Dylan to his radiation treatment. We talked the entire way down and back. I asked him if he knew the way to the treatment, he said that he didn't pay that much attention as his dad was driving. Mostly he said, I sleep or have my eyes closed. I told him I really did know how to get to the hospital, but did he know where to go after getting to the hospital. He said, "Of course I know". (Why would I think any different?) We talked about the beautiful land that we live in and how lucky we are to live here. We talked about what an amazing family he has and what a wonderful neighborhood and ward he lives in. (may I insert, while I was waiting for him to get ready to go, 5 neighborhood girls brought him a bowl full of money, they had been around the neighborhood selling duct-tape decorated pens- they had $35.00 - and that is just one of the hundreds of acts of kindness that this wonderful neighborhood has done - what amazing people!!!! WE LOVE YOU ALL SO MUCH!!!)
It was a rainy day, and he asked if maybe we could get a parking place close to the doors, cause he said he really didn't like to walk that far. As we drove into the parking garage, there were some handicap parking spaces available, he said, "Don't you think that I am a little bit handicapped? So we should be able to park in them." I said I thought that there was a parking space just around the corner, and there was, so we didn't have to walk very far.
As we got into the hospital, he went up to the front desk and he asked if he could please get the golf cart to take him back to the radiation treatment. They said of course he could, and we got to ride on the golf cart again. (I went in with him and Ryan 2 weeks ago to see Dr. Thompson, after leaving Primary Children's Hospital to find out about his radiation treatments and rode in the golf cart then). The golf cart is a great idea, it is a long way to the radiation treatment area, and it makes getting there a bit more fun.
As we arrived at the radiation treatment area, he went up to the desk, the nurses said, "Hi, Dylan, we are waiting for you!" He said, "Can I check in?" they said, "Yes you can." He went over to the computer screen and checked himself in. The nurse told him that he would have to wait a little while, because there was someone else having treatment right now. He said that every other time that he has come he went right in, no one has ever been in there before him. (He told me before we left that it really didn't matter what time we got there, because no one has ever been there - I said that we really should go at the scheduled time, because that is when they were expecting us, and maybe someone else was coming after him.)
While we waited for about 20 minutes, he played his DSI and another puzzle game, and then it was time to go in. I asked if I could see where he treatment was, he told me that I could. I went with him and Mark into the treatment center, he jumped up on the table, and laid down. (This is his 4th time and he is an expert now). They put on his Denver Bronco's mask and raised the table, they turned on the laser markers and aligned it up on the side of his head, and then I said that I would wait in the waiting room. 15 minutes later he came out and said, "OK, it is time to go."
We went to the desk and asked if he could call for the golf cart. The nurse said that she would call for it. Dylan said, "They told me to call them". So the nurse handed him the phone and he asked if the golf cart could please come to the radiation treatment area. While riding back to the entrance, he said that there had been 25 patients that day doing radiation, 3 children (including him). We both were amazed that there were so many, and that was on that one machine, there are other machines in the hospital.
As we started home, he calculated what time we would be getting home. It usually takes about 1 hour, so we left at 4:30 p.m. and he thought we would be getting home at 5:30 p.m.- well we got home at 5:15 - we were fast, must have had a tail wind.
As we talked coming home, he said, "I am going to close my eyes, I am not going to sleep, but just close my eyes cause they have been open a lot today." But his eyes didn't stay closed very long, he just talked, and talked, about everything.
What a great day we had, just Dylan and me. I don't get very many days with just one grandchild at a time, and it was GREAT!!!! I am so grateful that Tom and I get to take him to treatment each day. No coincidence that we are now both retired and have the time and ability to do this service for him and his parents. I would do anything to help any of our children and grandchildren!!! They are all WONDERFUL!!
Thanks Dylan for allowing me to know you, you are amazing!!!
Dylan has always been a wonderful friendly person. At the hospital I saw that same friendly Dylan. He was so sure of himself and happy.
As I watch Dylan play with his brothers and sisters, he is always wanting them to be fair and do things right. He is always reminding them of the things that they should or shouldn't be doing. Last week he was dragging Avery across the family room by her leg to get her away from something she wasn't supposed to do. As I watched, I was struck with the thought that he wants them to do RIGHT and wants to help them choose the right. (Sometimes as with all siblings, it isn't always received with love and warmth and is not seen as being very helpful, but he wants them to get IT - I believe that he gets IT.)
I hope that we all get IT - REMEMBER WHY WE ARE HERE!!! we all shouted for Joy when the Plan of Salvation was presented to us, we all raised our hands and voted "YES" we accept Jesus' Plan and we want the opportunity to come to earth to recieve a body to prove ourselves worthy to be able to live with our Heavenly Father and Jesus again. Jesus Attoned for OUR sins, to make that possible.
PLEASE REMEMBER, Oh remember!!!!
Monday, March 21, 2011
This is a photo of the mask Dylan has to wear during treatment to keep his head still on the table and in the same place everytime. The cool doctors at LDS hospital painted in like a denver bronco helmet for him-very cool. The second photo is of his new buddy Mason Falk who battled leukemia. Dylan wears his Team Mason Fight Club bracelet everyday.
Sunday, March 20, 2011
Saturday, March 19, 2011
Higher Ground
Like many of you, I have spent the last week watching the news, video clips online, and thinking so much about the people in Japan. There is one clip that strung a strong cord with me. The waters came, one by one, cars, trucks, semi's, then buildings and house, were lifted up and swept away. I watched as peoples lives were ripped away from them. At one point the camera man turned around and videoed people watching from higher ground. When the sirens came, they all ran to higher grounds. This would not stop the turmoil around them. It would not make the water go away, or save their homes....but, it would save them.
Watching that, made me think of our own lives. Sometimes life may feel just like a tsunami. We might lose our homes, jobs, loved ones...and often times there is nothing we can do to stop those things from happening. But, we can choose, to get to higher ground. Higher ground is physical, spiritual, emotional. It is letting our minds focus on the positive, what matters the very most, be more forgiving, and seeing the big picture. It is getting up out of bed each day and moving forward. It is loving deeper. The wise man built his house upon a rock. On higher, safer ground. I have been amazed watching Ryan and Mandy do this. I have seen a new side of them. They are strong and powerful and have fully chosen to get to higher grounds. What an example, while their lives as they once knew them have been changed forever. Higher ground is where peace, love, comfort, & friends are found. So.. Let's all get there :)
Chelsea
Watching that, made me think of our own lives. Sometimes life may feel just like a tsunami. We might lose our homes, jobs, loved ones...and often times there is nothing we can do to stop those things from happening. But, we can choose, to get to higher ground. Higher ground is physical, spiritual, emotional. It is letting our minds focus on the positive, what matters the very most, be more forgiving, and seeing the big picture. It is getting up out of bed each day and moving forward. It is loving deeper. The wise man built his house upon a rock. On higher, safer ground. I have been amazed watching Ryan and Mandy do this. I have seen a new side of them. They are strong and powerful and have fully chosen to get to higher grounds. What an example, while their lives as they once knew them have been changed forever. Higher ground is where peace, love, comfort, & friends are found. So.. Let's all get there :)
Chelsea
Wednesday, March 16, 2011
The Ultimate Fix It Man
I am by no means a 'blogger'. Most times I have to ask my 11 yr. old how to turn some game on or switch inputs on our TV to watch a movie and I even grew up with video games (goes to show how quickly technology changes). Over the last week many many people have emailed or texted me or left voice mails with encouraging words and offers of prayers and positive thoughts and/or suggestions. I truly cannot thank you all enough for that. The sheer number of well wishes and prayers is overwhelming but most appreciated. I regret that I haven't been able to return every single one of them as my time is divided and stretched thin right now.
As a father and as a man, I am a 'fixer'. Many times Mandy will come home with a problem from the studio or with life in general and I have to ask her 'do you want me to simply sit here and listen or do you want me to fix it because that's what I do'. The bathroom sink overflows, I fix it. The washer doesn't work, I fix it. The rain gutter leaks, I fix it. I have a problem with a co-worker, I fix it. That's just what I do, it's how I'm wired. So, when a doctor says he can't instantly fix my son, I don't know how to handle that-it's against my nature and I'm pretty stubborn too so I don't take no for and answer very well. But for as much as I have beat my head against the wall the last week, wondering why we treat this type of brain stem tumor the same way for the last 30 years, I realize that I cannot personally do ANYTHING to fix my son. It is fully beyond my control to reach inside his head and rip that alien growth out of his brain stem and it is easy to give into the feelings of hopelessness and despair. However, over the last week, I've come to realize (more so than any other period in my life) that God is in control of this life. As I weep for Dylan, I know that Father in Heaven weeps as well for he is his Dylan too (and was so before he was sent to me).
Many people have asked over my life how I can believe in a God that would allow such terrible things to happen to such innocent children. My answer is this: It is part of the human experience that we all signed up for (although I'm convinced we didn't know all the details or severity of pain involved). Sometimes good things happen to bad people and vice versa, that is part of life. As soon as we learn the true relationship in which we stand toward God (namely, God is our Father and we are his children), then at once prayer becomes natural and instinctive on our part (Matt 7:7-11). And yet, it is not a case of always getting what we want but bringing the will of father and the will of the child into correspondence When I was in high school, had I aligned my will with that of my earthly father, how many mistakes could I have averted? (trust me there were many) Now is the same with my Heavenly Father. The object of prayer is not to change the will of God, but to secure for ourselves and for others blessings that God is already willing to grant, but that are made conditional on our asking for them. Blessings require some work or effort on our part before we obtain them. Prayer is a form of work, and is an appointed means to obtaining the highest of blessings. (gospel Library). Do I believe in miracles? Yes, I do. I have seen many in the last week. Am I prepared to face the future with God at my side for support and guidance? More so than any other period in my life! And I wouldn't trade the peace and love I feel for my savior, my God and my family now for the bitterness and anger that others feel about these types of tragedy for anything in this world or the next.
So, I can't fix this. I can merely place my faith and my son in a Heavenly Father's loving arms that loves us and cares for us deeply and I'm sure at times he must hide himself in the corners of the universe to hide his pain for the children that he so loves so dearly here on earth. I must turn him over to the ultimate 'Fix It Man'.I have lost others before and I will lose others after this and through it all, one constant remains: My faith in the plan of salvation and the truths contained therein. Needless to say my priorities have changed the last week and if I could ask anything of those reading this blog, it would be that we be a little kinder to one another, we forgive one another a little quicker and in the immortal words of the greatest mother I know (my own) 'if if matters a 100 years from now then it matters now' Hug you kids, tell them you love them. Forget about the 'art work' on the wall and the mess down the hall or in the bedroom. Man was created to have joy and I can only hope to one day 'pay it forward' to the throngs of people that have literally come out of the woodwork to offer support and love for my family. It was never promised to be easy, only worth it. And this life is So worth it and I am thankful everyday that I get to spend it with my loving wife, children, family and dear friends.
Ryan-the dad.
Tuesday, March 15, 2011
Cancer buddies
Sunday night I stopped and visited the Shaw home for a little bit. While I was there, Cyndi, Katie(daughter), Travis(Katie's husband), Mitch(Cyndi's son), & Amy(daughter) showed up at their door. With them they brought a tree...tied with money & gift cards all over. Dylan was shocked, and kept saying "Oh my gosh, they are SO nice!!" over and over again! Both families shared lots of smiles and tears. One family battling cancer, reaching out to another. Cyndi gave Dylan so many kind words of love and encouragement. I quickly realized it was a healing event to both the givers and the recipients. It was one of the most tender experiences I have ever been a part of, and will never forget. Life is about serving others. Cyndi obviously isn't feeling great, had her 4th round of chemo the next morning, and chose to spend her time making someone else happy(or "filling someones bucket", as we say at our house! buy this book if you have children). That for me was such a wonderful example of service. I am so thankful to all of you... for not just filling...but overfilling our buckets daily. None of us would be surviving without all the love and prayers. We love you.
Chelsea
A Little Scare
Today we woke up pretty happy and all seemed to be well... Ryan went to work and I had only Drew and Dylan. I hopped in the shower after Drew had fallen asleep. I got out of the shower to find Dylan crying that he had a headache. Well it started out as a little one then grew to be a monster! He was inconsolable for about a half an hour. He couldn't feel his left leg or his for head. I was pretty scared. I got some Ibuprofen in him and I said a prayer out loud with him. After about 5-10 min. he finally calmed down. Ryan came home from work and called the doctor. They wanted to see him to make sure his tumor hadn't grown and caused a ventricle to swell. They said they may have to put a shunt in his head... No fun at all! So they traveled down to Primary's and ended up only having to get a CT Scan and not an MRI. Dylan was very relieved! They found his tumor hadn't grown since last week and prescribed him some pretty heavy meds for his migraines. I'm so grateful he didn't end up with a shunt, that would have been a whole new can of worms! He did say that he liked the guy that drew his blood because "he smelled like hot chocolate! " I asked him what I smelled like and he said "not really anything, because you shower a lot!" So I asked about Ryan and he said he liked how Ryan smells, because he "smells like beef jerky"! Obviously he has food on the brain- However, he has been asking for random foods like cucumbers and cauliflower! Who is this kid!? He continues to say the cutest things every day. He told me he cried when he was at the hospital because he missed me. We are pretty much attached at the hip. Tonight when I was cleaning up he asked what he could do to help. He told me, "just because I'm sick doesn't mean I have to just sit around and be lazy and not help". He really wants to be normal. He wants to be treated normal. I can't imagine what is going on in his little mind having everything he has known change completely in a week. Poor little guy.
All that I know is that I have never been happier with myself. I know it sounds bizarre but there is nothing on this earth that makes me happier than serving my sick little boy, my wonderful husband and my amazing children. Dawson has been a rock. That kid is more solid than most adults I know. He has been so helpful, protective and understanding. I could not ask for a better family. I have come to realize that when you are faced with trials like this you have 2 options. You can choose to feel sorry for yourself, cry all day long, neglect your responsibilities and give in to anger and sorrow. OR you can choose to look at all of the good that has come from this. My family has never been stronger, I love them more today than I ever thought possible, there are so many amazing people who love and care for us and there is so much good in this world. And... I am honored that Heavenly Father trusted me enough to help his son through this difficult time.
Monday, March 14, 2011
We are all being watched over, even if we think we are not.
Malachi 3:3 says: "He will sit as a refiner and purifier of silver."
This verse puzzled some women in a Bible study and they wondered what this statement meant about the character and nature of God. One of the women offered to find out the process of refining silver and get back to the group a their next Bible Study.
That week, the woman called a silversmith and made an appointment to watch him at work. She didn't mention anything about the reason for her interest beyond her curiosity about the process of refining silver. As she watched the silversmith, he held a piece of silver ore the fire and let it heat up. He explained that in refining silver, one needs to hold the silver in the middle of the fire where the flames were hottest as to burn away all the impurities.
The woman thought about God holding us in such a hot spot; then she thought again about the verse that says: "He sits as a refiner and purifier of silver." She asked the silversmith if it was true that he had to sit there in front of the fire the whole time the silver was being refined. The man answered that yes, he not only had to sit there holding the silver, but he had to keep his eyes on the silver the entire time it was in the fire. If the silver was left a moment too long in the flames, it would be destroyed.
The woman was silent for a moment. Then she asked the silversmith, "How do you know when the silver is fully refined?"
He smiled at her and answered, "Oh, that's easy--when I see my image in it."
If today you are feeling the heat of the fire, remember that God has His eye on you and will keep watching you until He sees His image in you. God is watching over you and whatever you are going through, you will be a better person in the end. "I can do all things through Christ which stengtheneth me."
Phillipians 4:13
What a blessing this is at this time, to know that our Heavenly Father is watching and aware of what is going on, not just aware, but is in charge.
There are not words to express the love and gratitude we have for everyone who has been so supportive, loving and kind at the difficult time. We feel Peace and know that Heavenly Father is in charge and is perfect. So grateful for Eternal Families and that we will be together FOREVER.
I Love my family More that anything else in the life, and Love that we are an Eternal Family!!
LaNae Shaw aka Grandma
Sunday, March 13, 2011
The Last Few Days
Well the last few days have been very eventful. Friday was my birthday... It ended up being the most memorable birthday of my life. My wonderful sister and friends took charge and granted my wish of wanting a fun party for kids. We had Rainbow the clown making balloons for the kids, pinatas, cake, prizes and the whole shabang! Nothing brought me more joy than seeing smiles on my children's faces. Dylan had a blast roaming from room to room entertaining everyone with his favorite songs. He sat on my lap and sang me "Happy Birthday" in his opera voice, it was hilarious. I will never forget that night. Thank you so much to all of you unexpected friends and family who showed up to spend that special time with us.
I can't believe how quickly his symptoms have progressed. To think that one week ago we had no idea what was going on just blows my mind. He continues struggling with headaches, double vision and balance. Yesterday he started experiencing ringing of the ears. Sometimes so intense he will cry for an hour. It is a terrible feeling to feel so helpless. I wish I could take it all for him. Yesterday morning he was feeling very down. I'm sure the steroids make your body feel out of control. As I laid down next to him cuddling and consoling him, his head was so close to mine and I wanted so badly to reach inside of his head and rip the tumor right out of it! It is indescribable watching your baby have to go through all of this agony. But overall he stays strong. I don't think I could handle it as well as him. He is certainly an amazing little boy.
Friday morning Ryan took him to school for a few hours. He was so excited to see his friends and they were all so kind to them. I think he is a little apprehensive about school at this point because he too doesn't quite understand exactly what is going on and is worried about kids asking questions. The doctors said to let him go when he wants to and don't make him if he doesn't. But he did make his AR goal for the quarter and was bummed that he would be in radiation at the time of the reward which was going to a movie. So yesterday we and some friends went to see "Mars Needs Moms". Don't go if you are feeling emotional... :) He really enjoyed it and was happy to get out. Last night we had the amazing opportunity to attend ward temple night. They had arranged for it to be in behalf of Dylan. We met in the Preisthood room and had the most beautiful prayer to begin a fasting session for him. The amount of support there was unreal. I have never in my entire life had such a spiritual experience. The temple has such of way of helping your heart and spirit when you need it the most. I am so grateful to everyone who participated in this. I have definitely been impacted immensely from it. I ended up with the most peaceful feeling that everything will be okay. Not necessarily that Dylan will be completely better but that we will survive this journey.
My perspective on life has done a complete 180. Friends and family who have gone through similar experiences have told us to look for the little miracles and blessings along the way... There have already been so many! One of those miracles is that for the first time in my life I walked through Target and wanted nothing. For those of you who know me, that is major! The only thing in this world that I desire is to have my family forever. Take all the floof and fluff away, it doesn't matter. I am more determined then ever to make myself into the person I was meant to be. I am more determined to help my husband and children become who they are supposed to be. I know that Heavenly Father is watching out over us. Sending us angels in the form of friends and family who are carrying us through this. Thank you again to everyone who has and continued to help push us along. You will never know how much it means to us.
Friday, March 11, 2011
Miracles
The number one thing people keep asking me is, "Well, do you believe in miracles?"
For me this is a very tricky question. OF COURSE I believe in miracles. Of course I believe that God has the ability to make miracles happen. Of course we are all asking....if there's a miracle waiting to happen....can we PLEASE have it?! This will never stop. But, all of the asking about miracles really got me thinking....just what is a miracle?
A miracle to me, is that there is a big beautiful plan, that if we open our minds & mostly our hearts, we can see glimpse's. It is a miracle, that no.matter.what, we have the opportunity to be eternal families. It is a miracle that we are here on Earth together learning & growing. It is a miracle watching people from all over coming together & sharing the tender love of their hearts with each other. It is a miracle that we can forget all the distractions around us and focus on the true purpose of this life..and believe in it. With our whole hearts. It is a miracle seeing a brand new baby join our family.
So, yes....YES I believe in miracles. In fact I believe we overlook most of the miracles happening every single day. I believe that if it is God's will, for this tumor to miraculously go away, it will. There is so much peace in that . Peace that only can come from turning our will over to the Lord. Today is a miracle.
....for I do know that whosoever shall put their trust in God shall be supported in their trials, and their troubles, and their afflictions, and shall be lifted up at the last day.
Alma 36:3
Chelsea
Thursday, March 10, 2011
March 10th, 2011
This is Mandy. I can't pretend that this will be fun for me or that I have any desire to do this but I would do anything for my little boy who I love so much!!! And we know all of you are awaiting the latest update... I can't begin to tell you how much love and support we have felt. We have always known we have been blessed with great families and amazing friends but over the last few days it has been overwhelming! Thank you so much for everyone that has prayed and fasted for us. It is your prayers, support and friendship that are truly helping us through this difficult time.
Yesterday we went to Primary Children's to meet with Dylan's Oncology team. There we were given a lot of information and the doctors were very competent. We feel we are working with some of the best in their field. Dylan's tumor is called a Diffused Pontine Glioma. They figure he has had it for possibly years. The tumor has just grown recently which has led it to start pressing on his nerves in his brain stem. This has caused him headaches, partial paralysis of his face among a few other symptoms which led us to seek answers. We are very fortunate to have such wonderful Pediatricians who were able to push for quick tests and results. We are very appreciative to them. During our meeting with the Oncology team we learned the location of Dylan's tumor. It is throughout his brainstem thus leaving it inoperable. Our plan as of now is to slow the growth of this nasty tumor. Last night Dylan started on steroids which he will take for the next week to help with the inflammation and take some pressure of his nerves. This will cause him to gain around 20 lbs. over the next few weeks. Today he is going down to LDS hospital to get fitted for his mask that assists in pinpointing the tumor for treatment. Starting Monday he will begin his radiation treatments. This will continue for 6 weeks Mon.-Friday. He met Dr. Thompson who will be performing these treatments. He really liked him and he made Dylan feel very comfortable.
Sooooo, that is the plan for now. Obviously there is a grand plan that we don't quite understand yet, but I am certain that in time we will. We are so grateful to have the knowledge we have been blessed with that will continue to be a strength for us. I truly believe (and I'm not just saying this, I have experienced this personally :) ) in the power of Priesthood Blessings and prayer. I also know that certain experiences are strategically designed to touch our lives at specific times. This especially includes the timing of the arrival of our newest family member, Drew. He has brought such a special spirit into our home. That, coupled with the rest of our amazing children who are constantly dancing, singing, drawing pictures or just giving us loves, makes us realize the magnitude of all the blessings we do have including all of you. This will not be an easy road. As much as I try to relieve the intense emotions with humor, they are still very raw. I will do my best to keep up on this blog, I think it will be some kind of therapy for me as well as provide answers to others at the same time. Once again, I can't even begin to tell you all how much we appreciate every single thought and prayer. Dylan is one special kid. He always has been. He too has been so touched by all the people who have shown love and support to him.
Tuesday, March 8, 2011
Today....
I have a love/hate relationship with being the first to post on the blog. The love, is because I get to be the first to write just how much I love Dylan. From the very beginning of his life he has been the SWEETEST little boy! He is so kind to all of his friends, siblings, cousins, and even the grown ups! The boy has about the prettiest blue eyes there ever were! My kids love Dylan with their whole hearts, which makes me even love him more. He is an such a wonderful part of our family.
The hate part, is because none of us want Dylan to be in this situation. We do not want to have a blog to keep you all informed about treatments, doctor appointments, and medical stuff none of us understand. We want to be writing about all the normal kid stuff...fun, happy things. BUT since we are here, this is what the blog will be. A place for you to read updates, tell Dylan how amazing & tough he is, and read the feelings of many of his family members.
Today we know this..... Dylan has Brain Stem Glioma. It looks like it has been there for years, slowly growing. It has now affected nerves in his face, leg, and balance. His eyes are also having a hard time focusing. The tumor is inoperable because of its location with all the nerves(I'm sure this is exactly how a dr would describe it...sorry I am not very smart) They are going to Primary Childrens in the morning(Wednesday) to meet with the Doctor, and discuss the plan. We are not sure if they will start radiation then, later, admit him, or any of those details.
Tonight there was a very special spirit at the Shaw home. Tender words and tears were shared. Dylans emotions went in waves of happy, sad, & scared. I can't imagine what his little mind is going through. I wish I could take it all away for him. I wish their sweet family could just be together and enjoy this new baby. I wish for so many things right now but I am trying to focus on the teachings of our Savior.
We are promised many times in the scriptures that
1: We will not be given more than we can handle 2:We are never alone 3: Heavenly Father is in control
When situations like this occur our faith is tested, and we often feel alone. I know that we are not. I know that the very person who gave us life, and everlasting life is there for us. He hears ALL of our prayers, and knows the very very depths of our souls. He will comfort us, as we seek His comfort. Dylan will feel all of the fasting and prayers in his behalf. Mandy, Ryan and all of their 6 babies need the love & prayers. Our God is also a God of miracles, and right now...I am praying for one...for the this amazing little boy.
Chelsea
The hate part, is because none of us want Dylan to be in this situation. We do not want to have a blog to keep you all informed about treatments, doctor appointments, and medical stuff none of us understand. We want to be writing about all the normal kid stuff...fun, happy things. BUT since we are here, this is what the blog will be. A place for you to read updates, tell Dylan how amazing & tough he is, and read the feelings of many of his family members.
Today we know this..... Dylan has Brain Stem Glioma. It looks like it has been there for years, slowly growing. It has now affected nerves in his face, leg, and balance. His eyes are also having a hard time focusing. The tumor is inoperable because of its location with all the nerves(I'm sure this is exactly how a dr would describe it...sorry I am not very smart) They are going to Primary Childrens in the morning(Wednesday) to meet with the Doctor, and discuss the plan. We are not sure if they will start radiation then, later, admit him, or any of those details.
Tonight there was a very special spirit at the Shaw home. Tender words and tears were shared. Dylans emotions went in waves of happy, sad, & scared. I can't imagine what his little mind is going through. I wish I could take it all away for him. I wish their sweet family could just be together and enjoy this new baby. I wish for so many things right now but I am trying to focus on the teachings of our Savior.
We are promised many times in the scriptures that
1: We will not be given more than we can handle 2:We are never alone 3: Heavenly Father is in control
When situations like this occur our faith is tested, and we often feel alone. I know that we are not. I know that the very person who gave us life, and everlasting life is there for us. He hears ALL of our prayers, and knows the very very depths of our souls. He will comfort us, as we seek His comfort. Dylan will feel all of the fasting and prayers in his behalf. Mandy, Ryan and all of their 6 babies need the love & prayers. Our God is also a God of miracles, and right now...I am praying for one...for the this amazing little boy.
Chelsea
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