Super Ryan

Barrow Memorial Gardens

2011-07-08T19:43:00.003-04:00

After the last two years with us at the house, Missy and Ryan were moved to their final resting place, together, at Barrow Memorial Gardens. We had a small family service. They are at peace for eternity beside Missy's brother Buck. You can find their marker at back right hand side of the cemetery in the Bailey section.

Les

It's never really goodbye...

2010-07-07T09:23:00.006-04:00

Our family and friends have viewed a portion of our lives that was, and has, been very emotionally and even physically demanding over the last 6 years. It is hard to fathom that Missy and Ryan had to endure such a devastating disease during what was supposed to be a long, fun and loving life. Heidi, Will and I have stepped very carefully along our new path, grieving our loss...remembering their beautiful lives...yet always moving forward. Missy and I had long discussions together about life and death. What to do if one of us went on before the other. Our children's health and well being during the years of their treatment and of course now, are always the most important consideration. We worked very hard even during the most difficult times, to keep injecting lots of family time, love, and fun. I am no Dr Phil, I don't have all the answers, just trying to be a good person, a good dad, and hold the memories of Missy and Ryan close to my heart. We all miss them, we all know they had so much to offer to everyone, even in this cruel world we live in where there is not always a cure to keep our loved ones with us.
A year has come and gone, their memory will not fade. They are together in a safe place, watching over us and smiling as we continue to celebrate the short time we were given with them. I am thankful for that every moment.
Recognizing the anniversary of our loss, I have chosen to say Good Bye and write this one last post.
I appreciate the thousands of new friends, some whom I have never met, that followed our journey through Ryan's site. We felt your presence, prayers, and at times reached out to you for help. Our family has received hundreds of cards and letters, and many generous donations to charities near and dear to our hearts. Words of compassion spoken so eloquently in a letter just today, a very kind follower reflected on all he had felt that Ryan and Missy changed for the positive in his life. That makes me very happy ...

Take care and with lots of love,

Les, Heidi and Will

Heidi and Will are so good to me !

2010-06-20T18:50:00.003-04:00

We have had a great day. I am so fortunate to have Heidi and Will. They have made my day... my life !!!
:) Les

20 years gone by

2010-05-25T21:54:00.005-04:00

I was blessed to have 21 years of knowing and loving you. Keep smiling on us and keep us safe. We love you, Happy 20th Anniversary Missy...
xo

Bethlehem Elementary Memorial

2010-05-13T14:22:00.005-04:00

The staff and students at Missy's and the kid's school, Bethlehem Elementary, unveiled a memorial today of a beautiful tree and a plaque bearing their names. Thank you to everyone that was able to make it out, especially Matt and Max, two of Ryan's closest friends :(

Happy Mother's Day / Birthday Missy :)

2010-05-09T20:41:00.004-04:00

We kept busy this weekend which was very nice. This afternoon Heidi Will and I grilled out then sent a couple messages via balloon delivery to heaven for Missy's Birthday and Mother's day. Missy loved birthdays!!! We had an awesome ice cream birthday cake for desert. Missy's mom, sisters and niece came over to check in on the three of us.

Thank you all for checking in on us, we really appreciate your thoughts. ;)

Les

Setting the pace

2010-05-03T06:46:00.004-04:00

Lauren's Run had an excellent turn out yesterday. What a lot of fun !!

I need to thank all of Team SuperRyan's sponsors and Team Members. You all did an amazing job !! So much so that our team placed 3rd in the fund raiser and on top of that...Will placed 1st in his division for the 5K !!! 20:05 That is a great time (5min faster than me:)

Lauren's Run is this Sunday

2010-04-27T08:50:00.009-04:00

Thank you to all the supporters of Team SuperRyan for this Sunday's annual Lauren's Run event. This audio below is Missy and Ryan's interview with WSB radio...It breaks my heart. Cancer is a horrible struggle.Missy would stay so positive in the midst of having all the odds stacked against her. She was deeply involved in raising money and awareness for childhood cancer research. Even through her own agonizing treatments, it was still about the children of all our fellow fighters.

Her wish was for us all to live a happy, healthy and productive life. To remember her, and keep fighting for the CURE. This, we can do.

Ryan's Team link is above. Thank you again.

Les

Lauren's Run 5k Fundraiser May 2nd

2010-04-08T11:25:00.005-04:00

Want to be on the coolest team at the event on May 2nd ? You really don't even have to be there but it would sure be great to have you.

Click on the link below to donate and help find a CURE for childhood cancer.

http://www.firstgiving.com/superryan

Thank you !!!!

Les

Easter weekend

2010-04-04T17:52:00.004-04:00

Junior/Senior prom night was Saturday. Heidi was as gorgeous as ever ! The group of 16 rented a party bus to chauffeur them around. They started out at the Georgia Club for pictures, then off to Athens for dinner and a night of dancing. They all made it back here by midnight for the after party. Those crazy kids got into the pool...Brrr !!!!!! They had the Jacuzzi and a bonfire to warm them up. All was wrapped up by 4am.

Prior to Heidi's after party, we had had lots of our friends over on a beautiful Saturday afternoon for dinner...and as you can see above, a little singing also !!! It has been soooo long since we have done anything like that here. It was very nice do it again. Thank you to all our friends for coming over :-D

If you saw a blue streak whipping by you a couple times this weekend, it was Christina and I riding hard on our racing bikes !

Will is deep into this years soccer season and you can tell by looking at the picture, is experiencing a major growth streak! He is doing so well in everything, I am very thankful.
We are all finally getting excited about our Southern Caribbean cruise. Flying to San Juan on the 17th, leaving port on the 18th for week long vacation. It is going to be very relaxing !

My apologies for the hiatus but we have simply been staying busy with sports, school and work....and few trips back and forth to New York on weekends ;-)

Thank you so much for checking in on us.

Les, Heidi and Will

Missed...

2010-01-08T09:16:00.004-05:00

Pictures and memories are simply a bandaid on the broken hearts we all still have. I have so many of both. Most of the time they bring smiles to my face but they also bring sudden and utter sadness, like falling off a cliff.

The 6 months that have passed have felt like forever. I wish I could hold Ryan and Missy both, I wish for many things...

The only one I have some control of is making sure Heidi and Will continue to be happy and healthy. To make sure they know Missy and Ryan are in awesome hands and that they are watching over us. Heidi and Will have pressed on with unbelievable strength. I am so proud of them. They bring laughter into what could have been a very quiet and solemn house. I can't thank them enough for that. They mean the world to me, as do the precious memories of Missy and Ryan.

Sadly...Les, Heidi and Will

Tubular !!!

2009-12-25T21:06:00.000-05:00

Fun on the tubing hill with our cousins Lisa, Dennis, Emily and Justin

Merry Christmas !!

2009-12-25T12:35:00.002-05:00

Merry Christmas !!!!

2009-12-24T21:02:00.002-05:00

Skiing today in beautiful weather and snow conditions. The kids and I have a lot of visiting still to do. They are really looking forward to Christmas morning.

Merry Christmas and Happy New Year to all our friends. With much love, Les, Heidi and Will

Board...ing Ha!!!

2009-12-22T19:18:00.003-05:00

We were lucky to have made it here at all. We had forgotten a passport at home so we ended up missing our 8am flight out due to the extra time in the car. With all the fights booked for the next couple days, some artful negotiating and a few hundred dollars, got us on a later flight that day bound for Canada. Arriving safe and sound, we have already taken in our first day on the mountain. We decided on snow boarding lessons and tested our ability to board. The three of us agree, skiing is for us. We are all a little sore after our snow boarding experience. We have plenty of activities planned over the next week. Lots of fun in store :)

Les, Heidi and Will

Tis' the season !

2009-12-06T14:38:00.003-05:00

Two weeks until we take off for Vancouver Island ! We are looking forward to the visit and some skiing. The snow on Mt. Washington is deep already. Heidi, Will and I put up the tree in record time today. I must say it looks pretty good !!!

Thanksgiving ??

2009-11-26T09:11:00.004-05:00

I am not thankful that cancer has taken the lives of Missy and Ryan. I am not thankful that billions of dollars later, her breast cancer was not curable. I am not thankful for the minuscule amount of money that is available to research far better children's cancer treatments. I am not thankful my house is spotless all the time. I am not thankful my life is so simple. I am not thankful that I can hardly see this darn keyboard right now!!...
I am thankful for Heidi an Will. I am thankful for the unbelievable support I have from Missy's and my family. I am thankful for all of our friends that continue to support us and keep our lives light hearted and full of smiles. I am thankful for Missy's insistence that her family moves forward, and treasure the great memories we all made together while she worked tirelessly to built the strong foundation that is serving us so well today and will through all the years to come. I am thankful I have someone very close to me. Someone I can talk to every day, not only about Missy and Ryan, but how our day went and what the future holds. That has been an unexpected blessing.
So...thankful ?...yes... and no.

Now as we say at the Lighthouse.....LLLLLLLETS EAT !!!!!!!
Happy Thanksgiving to all, Les, Heidi and Will

Smarty pants...and dresses !!!!

2009-11-20T08:02:00.002-05:00

Heidi and a few of her friends were inducted into the National Honor Society last night. I am thankful for Heidi continuing to stay focused, cheerful, helpful and strong. These years are trying in any girls life, even without all the added emotional stress she carries. I am so very proud of her...( you to Will :)
Les

Productive/fun weekend

2009-11-09T08:31:00.004-05:00

It was a gorgeous weekend in Atlanta. We managed to get all of our fall yard work wrapped up. Tons of leaves removed, grass cut, pool closed for the winter, garage and dog kennel neat and tidy and three soccer games. Heidi had taken the ACT test two Saturdays ago and took the SAT test this Saturday. 5 hours Ugh ! She was pretty confident she had done well on both.

Kristen called with extra tickets for Sunday nights Thrashers/Blues game so the kids and I met Jean and Steve's family, Kristen and Mike's family to watch Atlanta kick St. Louis's butt !!!! Thank you Kristen :) We all had so much fun !

I have been trying to figure out what to do that will be fun for the dinner that was lucky to be the high bidder on with "super pitcher" Tom Glavine and his family. I have a couple ideas in the works that will hopefully turn the whole thing into a big party, that would be awesome :) Keep your fingers crossed !

Les, Heidi and Will

Home Coming, Halloween & Happy Memories

2009-11-06T10:02:00.006-05:00

As time presses on, so are we. The kids and I stay extremely busy. They have been such a blessing to me it's hard to describe. The love we had for Missy and Ryan has never left our minds, nor will it ever. The transition into our new lives has been one of great memories, relived day after day mostly while sitting at the dinner table or watching our favorite shows. We know and can feel them watching over us. Cheering us on. Moving us forward. It is a good, warm, loving feeling. It makes me smile. I pray I can continue to lift up Heidi and Will and never let them down. That is of the up most importance to me.

Heidi looked as beautiful as ever for Home Coming. Her only wish was for more student input for song selection!!!! Things don't change because I can remember the exact same feeling at our dances, Ha !!

We stopped by our usual Halloween haunt, Missy's brother Walt's house. They get hundreds of little trick or treaters each year. Walt and Sarah put on a great party, very fun. Heidi had her own later with scary movies.

We have just two more weekends of soccer then it's finally over. You always look forward to both the start of the season and THE END !! This also means the beginning of Basketball season for Will. Ugh...

We are really excited to be going back to Vancouver Island for Christmas. Love skiing, roasting oysters on an open fire, cracking a Miller or two with old, but dear friends. Can't wait !!

I have managed to get out a couple times, with plans for a couple more. Lots of fun stuff to do !! We have also booked a cruise over the kids spring break. It's a long time away but still something to look forward to.

Thank you to all our friends for keeping us in your thoughts, its a comforting feeling. Les, Heidi and Will

Parked it

2009-10-05T21:42:00.003-04:00

We opted for Universal Studios and Adventure Island today instead of another water park. (check out Will's expression while looking at the two to his right)

With express passes we were able to get in every ride at both parks, at least once by 6pm.

We all had a great time flying from coaster to coaster and a great lunch at Jimmy Buffet's Margaritaville.

We will head home first thing in the morning. My cousin Kim is in town so I hope to catch dinner with him in Atlanta tomorrow night. I know Rick has been doing a good job with Balto but I'm sure Balto is ready for Will to get home and clean out his pen!!

The kids had such a good time. Everything went so smoothly. I am thankful we could get this trip in and give them a well deserved, fun break :)

Les, Heidi and Will

Still summer in Florida !

2009-10-03T20:11:00.005-04:00

Our first day in Orlando was pretty laid back. Kim and Tim Hudson (Go Braves!) were kind enough to let the kids and and I use their house here in Celebration Fl. It is the perfect time of year here, 90 and sunny :)

The kids and I headed out to Boggy Creek for a high speed ride on an air boat. Ever since watching Gentle Ben on TV over 30 years ago, I've always wanted to do that. They are very fun boats...loud, but fun!! We saw plenty of gators. Young ones. Capt. Jeff grabbed one and let Will hold it.

Then we proceeded to get our obligatory Polaroid with this 3 year old with his poor little mouth taped shut. I asked...but they wouldn't remove it. We spent the rest of the day messing around at the pool.
We are going to Wet n Wild water park today and Disney's Blizzard Beach tomorrow. I'm guessing lots of stairs. I need it after all this restaurant food !!

Les, Heidi and Will...living life

Quiet Heroes Photo Shoot

2009-09-26T14:33:00.004-04:00

Lynn Crow Photography donates countless hours of her professional services to benefit CURE and also the families dealing with childhood cancer. Her link above, are pictures from the Quiet Heroes Luncheon.
Awesome job Lynn !! Thank you so much.
Les, Heidi and Will

Shhhhh......Quiet Heroes

2009-09-19T19:53:00.006-04:00

What a tremendous day at the Hyatt Plaza downtown Atlanta where Cure Childhood Cancer held their 5th annual, tribute to Quiet Heroes. This luncheon was Missy's favorite event of the year. Mom's of children with cancer are honored while the fund raiser pulls in a few hundred thousand dollars. Thank you again for all of you that have donated to this charity on behalf of Missy and Ryan. This year was dedicated to the two of them. Kristin, thank you for all of your kind words. Jill, you were awesome as the Hostess. I know Missy was smiling! Soooo many of Missy's friends came up to me to offer condolences and check on Heidi, Will and myself.
I must say that it was definitely my lucky day. I had a full table of all of our friends. I also was lucky enough to have one of my raffle tickets drawn and won a new 54"plasma TV . I was also the lucky bidder for my family to join Tom and Chris Glavine's family for dinner. I am really looking forward to that. We are not sure where we will do dinner but I'm holding out for just grilling burgers in the backyard !!!!
Lynn Crow photography took a million pictures so I'm hoping to grab a couple and put them up here soon!!
Missy had a chair at the mothers table and some of her longtime friends wrote and signed a guest book for her. It was a very special gesture. Thank you so much for including Missy ! Thank you so much Kristin and Ginger for inviting me to help attempt to fill her void. I really appreciate the opportunity to participate. Now if we can just get the Foxworthy PSA's on the networks, that will really help the CURE push !!!!!!!
Still counting our blessings... Les, Heidi and Will

Sept. is Childhood Cancer Awareness Month

2009-09-15T22:04:00.004-04:00

The Millers Childhood Cancer Awareness Month tribute video. Thanks Sherry

New office pic

2009-09-14T14:10:00.012-04:00

Missy.......... Forever In Our Hearts .......... Ryan

May 9 1963 - July 8 2009.......... July 26 1998 - July 10 2009

This picture really captures the true face of childhood cancer. Missy, wanting to drink up as much of Ryan as she can, while she can... Ryan expressionless, going through the motions, just as he was told to during every procedure we'd ever asked him to endure. He was always so brave. I hated having to tell him "hang on, just a couple more minutes, you can do it, you're doing so well...." it was torture. He would look at me through his tears, his eyes saying, "why are you doing this to me" yet he would never utter a word. It makes me so sad I just can't bear it...

Les

Last call .....

2009-09-09T12:41:00.004-04:00

We have two seats available at our table for the Quiet Heroes Luncheon, 11 am Saturday the 19th. Great Food, Great People and a Great Cause. This year is special for me, not because it's my first time, but because this Quiet Heroes Luncheon is being dedicated to Missy. There are unbelievable items to be bid on and raffled off. Perfect for early Christmas gifts !!! Seats are $125 each. It's going to be fun :) Check the link above for all the information.
Les

Day 2 on 11Alive News

2009-09-01T13:18:00.006-04:00

The second installment from 11Alive News features Elle Rivers and son Jake also more on Quiet Heroes. Tomorrow, the segment will focus more on the Cure Childhood Cancer organization.
Very nice job this morning Elle !!!

This is one of our pics from our PF Chang's lunch yesterday. What a great time with Lisa, Lynn, me, Kristen and Ginger. Fantastic gifts :) My turn next !
Wade and I caught up over a couple of beers at Taco Mac. I got home at 5 and Heidi and Will had cake cards and gifts waiting for me. They are the best !!!! Rick, Barre and I took the kids and their friends to dinner in Athens and slammed a Raffertini or two !! Thanks for driving Rick ;) Very nice Birthday, thank you all for the notes, emails, calls and most importantly prays for our family.
Les, Heidi and Will

September Is Childhood Cancer Awareness Month

2009-08-31T09:03:00.002-04:00

11 Alive News and Jill Becker kicked off "Childhood Cancer Awareness Month" this morning with the Becker's telling their story of their son Matt, and his battle with cancer at age three. Matt was a treasured friend of Ryan's. Matt has chosen to give back to other children that are stricken with this horrible disease by volunteering with Camp Sunshine. The two quickly became good buddies at camp. Matt was nice enough to remember Ryan this morning while talking about his experiences during his fight and how it has effected his life. His mom Jill, was a friend to Missy. She graciously lends her name and time to keep waging war on childhood cancer even after being away from the front lines for 18 years. There are many caring people in this tight knit community that work tirelessly to keep children's cancer awareness alive and raise the research money that is desperately needed.
Thank you to Jill and her wonderful son Matt for all they do :)
Les

Busy Wknd !

2009-08-30T16:23:00.004-04:00

Lots of play time and just enough left for lawn and laundry. We've had a pretty good weekend. :-)
I'm still scheduled for lunch in Atlanta on Monday, then out for dinner in Athens later on that evening. Looking forward to it all tomorrow.

Les

WSB750 Care-a-thon

2009-08-27T14:49:00.008-04:00

WSB's annual Aflac Cancer Center Care-a-thon is under way. Ryan has participated in this, among others, fundraiser over the years. His friend Kenneth and mom Anastasia have remembered Ryan on the WSB site. Thank you Anastasia for that :) Click on Kenneth M at the bottom of the WSB link to read Kenneth's heartbreaking story. We wish them great days, no pain and many smiles. Cancer is a terrible horrible thing...
Les

Quiet Heroes

2009-08-26T22:50:00.004-04:00

Jill Becker and 11Alive News will airing a tribute to Quiet Heroes starting Monday morning at 6:45am. Jill's son Matt was a good friend and a camp counsellor of Ryan's. Matt was one of the reasons Ryan looked forward to summer camp so much. If you can't tune in, I'm sure it will be on their web site at 11alive.com
The luncheon is happening Sept. 19th. This is one of the largest fundraisers for Cure of the year. From everything Missy used to tell me about going in the past, it's a good time with lots of cool and unique items to bid on. Bring your check book and I'll see you there !

I'm looking forward to a "birthday lunch" this Monday with some good friends . I'm thinkin it's going to be fun ! :)

Les, Heidi and Will

Day by day

2009-08-24T23:13:00.004-04:00

We have been settling into the new routine. Staying busy doing all the things that need to get done and deep into the new soccer season. We got Will's Pass Port application filled out and turned in today. We are going to Vancouver Island for Christmas and a little skiing. Smith and Julie are going to come with us. Very excited about the trip ! I'm going to Vegas over the long weekend to hang out with Jimmy and his family. No partying though !! (ha!) We are also planning a few days in Orlando to hit the Water Parks. We had to ditch them the last time we were there so this will be a make up trip.

Heidi and Will have been sooo helpful to me. Above, Heidi is whipping up a batch of her famous brownies !
She is such a smart, intuitive and resourceful young lady. I'm very lucky to have both of them. Very lucky to have great memories of Ryan and Missy to get me through the slow times and evenings. I have to say marriage is far better than being single, I highly recommend it....you singles will thank me for that little piece of great advice ! ;-)
Well, I'm falling asleep here !!!
Good night to all of our family and friends. Les, Heidi and Will

I used to hate those magnets on the fridge !!

2009-08-17T11:43:00.001-04:00

Thanks Heidi :)

Big Hearts, that's what our friends have

2009-08-10T08:26:00.003-04:00

After a long season of daily swim practices and weekend meets, most parents and swimmers are ready to hang up the suits and move on !!
Our team on the other hand organized one more swim meet. A meet solely to raise money and awareness for Missy's two favorite organizations, CURE and The Lighthouse.
At our swim team wrap up party last night they announced that our 3 hour meet raised $2100.00 for these two charities, Yeah !!!
It was a lot of additional work and effort on many peoples part and I want to say how appreciative I am. Thank you so much to the Board, the coaches, all the volunteers, the donors and especially the swimmers that participated in the "SuperMorgan Swim Splash 09" I plan to match that awesome donation in Ryan's and Missy's names.
I also need to thank all the people that have send their donations directly to CURE and The Lighthouse. Missy's best friend Karen has been helping me send out Thank you cards. We have done our best to locate accurate address's and get them sent out but we have had a few come back. If you have not received a personal thank you by now, please accept this note in it's place. You have all made a wonderful gesture on mine and Missy's behalf.
I have been invited to attend the Quiet Heroes luncheon/fundraiser September 19th for Missy. I think it's really for the mom's but Kristen assured me there would be other guys there!
Sarah Corrigan, a writer, editor, publicist who has worked with Ryan's friend Jena, is looking into the possibility of publishing Ryan's story. I am very excited that a professional believes his story may have the right content to share with a much larger audience. Smith and Julie are good friends with Oprah so I may get them to get it into her "book club" should this work out! That would likely double sales!
With the first week of school over, we are getting in a routine. I am so thankful for the strong sense of self worth and independence Missy has instilled in Heidi and Will. I am so proud of them. Their strength is absolutely unbelievable. I thank God everyday for them! I do want you all to know, we are doing "fine". We have many many more smiles than tears. We miss them terribly but find peace knowing that they are together, directing us from the heavens above.
If I could just feel their touch one more time...
Les, Heidi and Will

Not invincable

2009-08-01T18:25:00.004-04:00

Last night, my buddy Rick and I took Heidi and Will and a few of their friends, on a prearranged Braves baseball extravaganza. A massive 14 passenger SUV Limo picked us up at the house for a crazy ride to the Varsity where we all stuffed ourselves with burgers, dogs, fries and onion rings. Back into the Limo and dropped off at the Braves entrance where we were met Jessica Carlyle, she handed out Braves gear for everyone! After the game, she took us onto the field for a great view of an extensive fireworks show. We loaded back up and hit McDonald's in the Limo for fun :) What a great night. Thank you Kristin Connor and the whole gang at Cure, Kim Hudson, Jessica Carlyle and the Braves. Fantastic.

Our awesome swim team held and charity event this morning for The Lighthouse and Cure Childhood Cancer, Missy's two favorite organizations. Close to 100 swimmers participated. All had custom T-shirts " SuperMorgan Charity Splash 2009". It was very successful. Thank you to all the sponsors, The Barracuda Booster Club, First Baptist Church of Bethlehem, Church at Winder, Handbags by Diana, Maynard & Bartlett Realty, Ricky Robinson Heating & Air, Debra Robinson, Bently's Photography, Dr. Sharon Taylor and the Winder YMCA. What a large event to make happen so quickly !

I want to thank my newest friend Tim Cash. He facilitated The Mall of Georgia Honda buying back Missy's car today. I really didn't need the hassle of trying to sell it. It was too easy!

Karen came over to help me with Missy's office and the years of paper, documents, files, pictures, cards and on and on that she had accumulated. It was a huge job, but we got 95% of it done.

After having such a productive day, I have never felt such incredible sadness since losing them. I thought I was doing so well , then to get so overwhelmed to the point I could not hardly breath. It was far to much done in too short a time...then suddenly alone, to sit and reflect. It makes me so mad and so very sad. Heidi came in and sat down beside me and my fortitude returned. I get so much strength from Heidi and Will. I just need to keep them close.

Missy and Ryan had the best friends and family in the world, and that love has made it's way, full force to us. For that, I am thankful. We do love you all. Les, Heidi and Will

Happy Birthday Ryan

2009-07-26T07:39:00.003-04:00

I could sure use a Birthday hug. I miss you terribly.

Dad

Autopilot

2009-07-20T20:06:00.013-04:00

Adrenalin runs through our veins making it bearable to continue on, even when you feel everything should be falling apart. I'm smart enough to know that this won't last long and I'm bracing myself for both the highs and horrible lows of grieving.

I have so many people to thank for making the last 2 weeks smoother that anyone could have imagined.

Julie and Smith, I truly hate that you have any experience in the planning and execution of a funeral. It absolutely tears me apart, but you have helped us out on so many levels. The service was perfect, there's nothing else to say...Thank you both, I know it was extremely difficult for you to go through again and I have asked more from you than I should have.

To my mom, you mean the world to me. I thank God to have you in my life. You knew exactly what was needed during the last month and a half, amazing. Thank you to the Bailey's for everything they have done for us and for graciously standing along side me during all the planning.

I have many wonderful people to thank, among them are, Wade and Donna, Mureil, Kristen, Jay, Steve, Jimmy, Johnny, Danny, Scott and Kristy, Karen, Bud-Ken-Michael-Jon, for picking up all my office workload, The First Baptist Church of Bethlehem, Smith Funeral Home, my family for flying in and staying with us, making sure everything was always done for us.

I feel as if I am operating in and out of a fog, forgetting things I have just said or done. I hope and pray that I can fill the understanding, compassion, wisdom and parenting skills that our family has lost. I honestly thought that losing Ryan would be the toughest part of this ordeal, it's not, I miss Missy unbelievably. My heart is in pieces. I don't know if I can raise these two beautiful children the way we could have together. I hope I won't let them or her down. I'm just scared. Les

The after party, PARTY !

Ryan always said " I like to be formal...but I also like to party "

We love you Ryan Reid !!!!!!!

Tribute Video Updated

2009-07-14T09:27:00.002-04:00

Missy and Ryan

What a great job Julie !
Thank you xo

Tune in.....

2009-07-13T12:51:00.001-04:00

11Alive News will tonight, at 6:00 pm, air a special tribute to Missy and Ryan.
Many thanks to Missy's friends Jill Becker and Kristin Connor for making this happen!

Channel 11 story

2009-07-12T16:49:00.002-04:00

News story follow up

Memorial Update

2009-07-10T15:30:00.009-04:00

Please note the Service venue change

Please join us in celebrating Missy's and Ryan's life

Visitation will be at

Smith Funeral Home

Friday, July 17th 2-4pm, 6-9pm

Saturday, July 18th 10am-12pm

http://www.smithmemorychapel.com/

755 Atlanta Hwy SE

Winder, GA 30680-4474

(770) 867-4553

Service will be held

Bethlehem First Baptist Church

Saturday, July 18th 2pm

http://www.bethlehemfbc.org/

548 Christmas Avenue(Hwy 11 North)

Bethlehem, GA 30620

770-867-3577

Missy is holding one of her babies...

2009-07-10T14:06:00.004-04:00

Early this afternoon, Heidi, Will and myself let our little Ryan go to be with Missy. He was so peaceful. I can feel Missy's arms wrapped around this shattered family, trying hard to make us be at peace.
Les, Heidi and Will

Broken Hearted

2009-07-08T21:37:00.003-04:00

I'm so sorry to have to say to all our dear friends that Missy lost her battle with cancer this evening. I truly wish I could personally call each one of her awesome supporters.
Les

The age old question...WHY ?

2009-07-08T18:43:00.002-04:00

As Missy's and Ryan's friends call and write, come and go throughout the day, the hours seem to last forever and at the same time, go by in the blink of an eye. This is a process that every one of us will have to endure during our lifetime. There is no easy way. For us older types, the pain is now, and very sharp. For our children, the duration of that pain is many times longer. They are also afraid of what the future holds. My job is to make that pain filled time as short as I can. So we are planning a celebration of two wonderful lives. Both having sooo many friends near and far. We do not have a date planned but this is a notice to anyone that would love to share a special moment or say how Missy or Ryan has effected their life. Just shoot an email if you feel up to speaking. I realize that some people are gifted with the ability to stand firm and speak from the heart, while others, like me, are freezers... But we'll take you all, we have time :)
It will be a day that will live in our children's memory forever. It is up to us to help make it uplifting for them and proud.
In lieu of flowers, we will be taking donations for Missy's and Ryan's dear charities, CURE and The Lighthouse.
In God We Trust, Les, Missy, Heidi, Will and SuperRyan

Long weekend...

2009-07-06T09:24:00.003-04:00

Since we got back home last Friday, Ryan has been doing relatively well with his IV pain medicines. He had a couple dose adjustments over the weekend. He is getting fluids during the night but still refuses to eat anything even though he and I had ventured out to the grocery store and bought a bunch of all his favorite snacks. His esophageal pain is better but he still winces and crys when he swallows because of chest and tummy pain.
Missy has gotten so much worse since Friday. She can no longer stand and is confused the majority of the time. Occasionally she is cognitive and that brings a much needed smile to me. Thank goodness my mom is still here. She has extended her return home by a couple more weeks. With both of them this ill, you can't leave either alone hardly for a minute.
Their new Doctor is coming out today with their nurse. We need to revise the plan and have a nurse here all during the day. With prayers, Les, Missy, Heidi, Will and SuperRyan

Five years.....

2009-07-02T08:34:00.003-04:00

Today is the last day we will be inpatient at Scottish Rite. We have been fortunate to have been given a great team that has cared for Ryan since first coming here in '04. The change in his health is very evident. Prior to these last 2 weeks, he would beg to get out of the hospital. He attempted on many occasions, bribing the Doctors. He talked his way out of ICU to go home just 12 hours after an 8 hour surgery! Now...he just wants to stay :'(

How do we even fathom what is transpiring? How did we possibly end up with both Ryan and Missy beginning home bound pain treatment the very same day...

How did we get so lucky to have such an unbelievable group of friends and family who have stepped up and gone out of their way to bring so much joy into Ryan's life. For that, we are truly grateful. We are not sure what the future holds but we do know this, we plan on continueing to appreciated every moment, we plan on trying to keep, at the very least, smiles in our house. We also plan to keep praying for miracles...Les, Missy, Heidi, Will and SuperRyan

Trying times

2009-06-29T22:42:00.005-04:00

Ryan is finally doing a little better this evening. He is back on IV pain, fungal, viral, oesophagio, reflux, seizure, blood and platelets. It looks as though we will continue all of our meds through IV as we will meet with "home health" tomorrow here at Scottish to get it set up. We should be up and running at home no later than Thursday. I have been trying to get Missy on board with the same service for a while. She will discuss it with her Dr. first thing in the morning. This service with allow not only comfort care but treatment care as well! Oral pain medicine quite simply does not work for either of them. The difference between oral and IV is night and day. It is so good to see him feeling better to night, but I know Missy's at home...feeling terrible. We are praying she can get some rest. Les, Missy, Heidi, Will and SuperRyan

PS; Heidi leaves for Ireland, Scotland, Whales, and England tomorrow morning. I hope she has an unforgettable trip.

Athens to Atlanta

2009-06-28T09:25:00.003-04:00

Both Missy and Ryan are in the hospital. Their counts are very low and pain is very high. We are hoping both will be out and home tonight.

A warm good bye to Vermont.....

2009-06-25T11:03:00.006-04:00

This is a frustrated little boy in a grown up world. It is very hard for him to socialize with kids his own age anymore. The majority of his friends are teens and older. This, or any other disease, steals the innocents that is supposed to live in all children long after only 10 years. It breaks my heart to see it, but this is the reality. This gesture is not aimed at any of the wonderful Doctors and nurses that went out of their way to make us as comfortable as possible while in Vermont. Dr. Sholler analysed Ryan's labs daily, making adjustments to his treatment on the fly. She sat with Ryan and really got to know his bad side and he showed her a little of his good. Everyone was so patient with Ryan. This has been the last 5 years of his life. Fighting, winning, losing, sacrificing, enduring. He is maxed...and this is where he is, and it makes me so sad. Ryan has been such a good boy through it all and I desperately hoped that a day would come, where we could sit down, take a deep breath and utter two simple words...we won.

He is getting sick several times a day. The thought of attempting to choke down many many pills makes him sick also. We are thankful for very little pain, as that was our goal with the Vermont study. This has been very successful.

I wish I could say the same for Missy. She is both very very sick and in a great deal of pain. It all just makes your head spin. It is simply unbelievable that this is all not fixable...We are praying for wisdom, compassion, guidance and great strength. Les, Missy, Heidi, Will and SuperRyan

One more day

2009-06-22T20:04:00.004-04:00

An uneventful day here. Ryan is doing sooo good with all his meds ! He trys so hard to please me, in which I'm not a big fan of. Heidi and Will...you keep it up though ! His tummy finally went down enough for him to think he could fit a chili-dog in it from Al's French Fry's (a Wade recommendation...you really do need to get into the restaurant biz, Wade...) this place is a Varsity clone. He did get half a dog down, then asked our nurse for some nausea medicine. I am positive none of his antics are endorsed by Dr. Sholler !
We are getting blood tonight, chemo tomorrow and platelets again tomorrow night. Then, fly home to check on mommy :) We are really looking forward to getting on a plane. Not that Ryan hasn't taken a shine to a great staff here, we sure have, but we don't want to overstay our welcome ! One more day...Les, Missy, Heidi, Will and SuperRyan

Puttered out

2009-06-21T16:17:00.003-04:00

As crappy as Ryan's feeling, when a Dr. unhooks him from the pole and says he can get out for a while....that has a different meaning to him than that of the Dr. He immediately made plans to go to Pizza Putt, kinda like Chuck E Cheese but with mini golf ! I wouldn't let him eat (not that he wanted to) but we did have enough time to get in 12 holes :) It was very strenuous on him but he was quite pleased with himself for doing it. He has been asleep ever since we returned. Day three of chemo done and just one more to go. His tummy is still distended but not as tight. He is still doing Morphine and we have started Miralax. We are also running 2 antibiotics just to be on the safe side. Maybe Chili-dogs tomorrow...I'm hoping :-) Les, Missy, Heidi, Will and SuperRyan

Half way through

2009-06-20T18:56:00.004-04:00

Wade called us today to give us the low-down on a Varsity style chili-dog place here in Burlington. The plan was to go there today but he is not feeling well enough to eat. His picture looks like he's packed away a dozen!But he really just can't expel the IV fluids as fast as they are going in. It is very painful for him and has been taking Morphine several times a day. We are hoping he is doing better by tomorrow, then stuff him full of chili-dogs!
He has been having vision problems over the last 3 weeks and I had kinda forgotten about it until Dr. Sholler asked today. He claimed he had none. Later today I asked again if he was still seeing double at about a 15' distance and he said yes. He just doesn't want any additional treatment so he says he was going to deny it. He also said he wished he could be hooked up to anesthesia permanently so he couldn't feel pain or worry, then quickly added I'd be hooked up to and we could still talk and do fun stuff...I told him he just described Heaven...Les, Missy, Heidi, Will and SuperRyan

Chemo started

2009-06-19T22:34:00.003-04:00

Ryan's has one chemo under his belt. We only told him this morning he was going back on chemo and you can imagine he wasn't too happy. He asked if he would lose his hair again. He is tired of going though that. I said we'll keep our fingers crossed that it comes back straight and blond, just the way he likes it !The biggest issue is that his tummy an ribs are so distended it looks weird. He is having pain with all this pressure. He has taken 2 doses of Lasix, a medicine that strips the body of fluid but we have no apparent reduction in his swelling. We went for a walk around to floor to try to help but it hurt him worse. Not to sure what the night holds but pray this fluid will find its way to the right places. He is taking Morphine still for his "normal" pain. He did eat just 3 spoons of soup and 1 bite of cake today. He said if they sold chili-dogs here in VT, he'd eat a whole one ! ya right. Missy is not doing well at home but continues to be cheerful and encouraging to Ryan and I on the phone. I can't remember if we mentioned my mom flew down from Canada to visit so she has been hanging out and helping around the house while we're up here. Hope she's been working on her tan in the near 100 degree weather there! Just 4 days to go! Les, Missy, Heidi, Will and SuperRyan

Progress and Progressing

2009-06-18T20:36:00.004-04:00

Not a good day for scan reports for Ryan or Missy. Ryan has shown progress in his bone and marrow but he has progressed in his liver, left eye and his resection location in his head. Chemo will start tomorrow and we are desperately praying that it gets to work immediately and takes control of it. His spirits are down and is still not eating. He is starting IV nutrition tonight. We will be in the hospital until Monday night and still on schedule to fly home on Wednesday morning. Good thing cause this fold out chair is going to kill me ! ( not that I'm whining :)
Missy got a telephone preliminary report that apparently shows progression also. She is meeting with her Dr. on Monday to get the full run down. I hate that we have to be so far apart when bad news is the only news of the day. Nausea, pain and mental anguish is taking a toll on the strength that she has left. I just can't imagine...
Seeking miracles, Les, Missy, Heidi, Will and SuperRyan

Perfect Sailing Weather !

2009-06-17T17:43:00.004-04:00

Ryan has done a wonderful job today with his team here in Vermont. I think we are breaking him ! Well Dr. Sholler is. He got his blood work done, which didn't look too bad, overall check up, and his nuke med injection. First thing tomorrow he drinks contrast for his combined CT and MIBG scan then on to his bone and marrow aspirates.

Our day ended with a 30' sailboat cruise on Lake Champlain. The wind was good and the weather was warm. Good thing to cause I left Atlanta without a jacket. My friend Smith said I might be able to find one at Burlington?? We had a great time with our new friend Captain Gideon ! Ryan did most of the sailing. There were a lot of sailboats out tonight enjoying the perfect conditions. Hopefully thing will go as smooth tomorrow as they did today. Les, Missy, Heidi, Will and SuperRyan

Day one back in VT.

2009-06-17T09:49:00.003-04:00

Who's excited to be back in Vermont ! not this guy...

We got in around 11 and settled into our new digs. We will be here until Friday when we check into Allen Fletcher through Monday. We our on our way to get his check up and an MIBG injection (damn, forgot his SSKI) We are hoping to tour the lake this afternoon on a sail boat. Ryan, " dad, can you even drive a sail boat" dad, "of course I can, how hard can it be" This should be fun if we can get the time to get it done !

We're feelin the love, Les Missy, Heidi, Will and SuperRyan

Hangin with the Channel 2 Crew

2009-06-15T20:45:00.005-04:00

Smith and Dennis hooked Ryan up with Mark Arum for an awesome tour of the WSB Channel 2 Studios. They were playing with the weather "blue screen", sitting in the anchors chair, visiting 95.5 the Beat, 97.9 the River and B-98.5. We can't forget Bortz ! Up next was a tour of Atlanta in their helicopter. They buzzed buildings, chased the Chattahoochee, a fly by Stone Mountain and hovered over Scottish Rite Hospital. He had a blast !!

The guy's pulled this together to help ease Ryan's stress of heading back to Vermont tomorrow night. We will get in late on Tuesday then meet with Dr. Sholler Wednesday. MIBG Scan, Bone and Marrow aspirates Thursday. Check into the hospital Friday through Monday for chemo, clinic on Tuesday. We will fly home at 7am on Wednesday. It will be a 3 months before we have to head back. We are pretty worried about the chemo side effects as he is feeling sooo bad already and not eating. On top of that, his counts are still extremely low. Wish us lots of luck. Prayers for Ryan and good direction for his doctors. Les, Missy, Heidi, Will and SuperRyan

Foxworthy, not joking around...

2009-06-08T10:30:00.010-04:00

One of Ryan's many friends, Jeff Foxworthy steps up for all children who are battling childhood cancer. Just click on his link and scroll down through the various videos.
We are also incredibly saddened by the relapse of another good friend. Patrick's family is interviewed in the link above also. We are wishing Patrick a speedy recovery and back into remission as quickly as possible.
Thank you to Kristin Connor and her staff at CURE, who keep leading the way and funding the research that is keeping hope alive for the children fighting this brutal disease.
Sincerely, Les, Missy, Heidi, Will and SuperRyan

PS: Wade, thanks for bringing your butt over yesterday with the family (Boston Butt that is) Wow, you need to partner in a restaurant !! That was the best BBQ and Sauce South of the Mason-Dixon !!

Never ending battle is exhausting

2009-06-06T16:13:00.003-04:00

Pillow...$20.00

Cell Phone...$100.00

Kitty...$5000.00

Happy to be going home...Priceless

Good news, bad news

2009-06-06T13:04:00.003-04:00

The CT scan shows the likely culprit of the fever and the stabbing pain, so we are checking out shortly. No real treatment or reason to hang out here. They trust us even though his counts and ANC are in the dumps. Not to sure the path we will be following now. We are emailing the report to Vermont this afternoon. Dr's George and Sholler will discuss next week and let us know any option. So the treatment for now is antibiotics and Morphine.
Missy has since checked into Athens Regional. Blood extremely low and likely platelets also. 3 units ordered. She is still very nauseous and in pain. She is in good hands though with her mom.
Les, Missy, Heidi, Will and SuperRyan

"I am happiest when our family is together"

2009-06-06T08:18:00.005-04:00

The walk down the hall to our room on the Aflac floor is so incredibly hard this time. We pass by Ryan's portrait with the statement he made to the photographer a couple years ago, "I am happiest when our family is together". We strive to make that happen as best we can but it could never be enough. Both Missy and Ryan are so sick and in so much discomfort, no pain. Never ending pain. If you get beat daily, soon it's just an expected occurrence and you push on and that is what they do. Along with that is the mental anguish that weighs more heavily on Missy than anyone of us could imagine. My time divided (unequally I must add) between our family is not fair to Missy. I truly wish I could concentrate solely on her getting better. Heidi and Will have both been shining stars. So helpful, so strong, so independent. We are so lucky to have them to strengthen our family.
Ryan's CT Scan was right on time last night, midnight on the dot. We made it out of ER and to one of these beautiful Aflac rooms by 2am. Ryan is on antibiotics, fluids and Morphine. No official results from the scan yet but first impressions were something going on with his liver. We should have the full report today. If his blood work comes back negative and he doesn't have another fever, we will be working hard to get out of here. If that happens we can resurrect the plans we had for this weekend with our old, near and dear friend Wade and his family coming out to the house. That would be great ! Distraction is good medicine. Keep your fingers crossed ! Les, Missy, Heidi, Will and SuperRyan

Can't stay away

2009-06-05T21:34:00.002-04:00

Ryan and I are back in the ER again. His tummy pain has not subsided since beginning a week ago. I got home from work and discovered a 102.5 fever, up to 102.9 once we checked in. We have a lot of contrast to drink before his midnight CT Scan. Missy and Ryan were in the clinic on Wednesday also for the same tummy pain and ended up getting blood and platelets. We are praying for an answer to his discomfort and hopefully a quick fix. For now, Les, Missy, Heidi, Will and SuperRyan

Quick trip to the ER

2009-06-01T17:41:00.002-04:00

Ryan has been feeling lots of pain lately but the last couple days he has experienced severe pain in his tummy and chest. He and his dad had a half day trip to the ER at SR. He was dehydrated and got some serious fluids. The ER doc said he was having pain from no food and all the pain meds. I'm glad they came home and he is resting on the couch. He has also been a little confused about things today. Les called Dr. Sholler and she made changes to his meds and said it was to be expected as well as his chest pains. The Nifurtimox can cause his joints to be painful and that is probably the pain he's been in. She was thrilled that his tumor markers in his urine had dropped by 100 points. That was nice to hear. We're gonna work harder on eating and drinking. Please pray for that and for no pain. Love, Les, Missy, Heidi, Will, and SuperRyan

Prayers for less pain please.

2009-05-30T08:49:00.003-04:00

I am so glad to see Saturday come. Ryan and I are home until he feels like going to watch the kids swim-if he does. He is back asleep, but that is probably due to the new appetite stimulant we've just started. I took him to the clinic on Thursday and he weighed 41 pounds. He got blood and platelets. Yesterday was field day at his school and it was very hard to watch all his friends running around playing and know he wasn't able. School doesn't get out until this Friday. It has gone on way too long. Ryan started complaining of pain in his chest yesterday when he swallows. If this continues through the weekend, we'll be contacting Dr. Sholler on Monday. Please pray for his pain to improve. We're going to try and distract him today with the museum movie. He has been talking about going to see that, but he wants all of us to go. And so we will! Love, Les, Missy, Heidi, Will, and SuperRyan

19 years !!

2009-05-26T09:06:00.004-04:00

Today marks our 19th Wedding Anniversary. We will likely do something simple as Missy is feeling pretty bad. Ryan has also taken a turn. He have been off of pain medication since Vermont but he started having leg pain again on Sunday and it has steadily gotten worse. He had to start taking Morphine yesterday. He did say that no matter how bad it gets, he will not do Fentynal !
We had a good long weekend. Jimmy and Frankie flew back Vegas Saturday morning after a week long visit. We got a lot of yard work done. We were invited to Smith's families lake house for an awesome day on the lake, a great fish fry with some great friends !! We are scheduled to go back to Vermont on the 16th, for 10 days (oh no) we are going to take Will along to help keep Ryan from going crazy. Ryan still insists that he is not goings and hopes that Will and I have a good time. This week we are praying for a major reduction in both of their pain, please help us out with that. Lot's of love, Les, Missy, Heidi, Will and SuperRyan

Loving life at home.

2009-05-23T12:21:00.003-04:00

Ryan and Les made it home yesterday around 5ish. He was able to get his blood and platelets and take care of the planned office visit from the comfort of the Aflac floor. He got a couple of stitches to close up his forehead. He said this morning he got the best night's sleep last night in his own bed. Thanks to Smith and Julie for coming down to the hospital and then coming out to the house and making our dinner. We're looking forward to another visit at the lake tomorrow. We had Ryan's favorite- a bonfire, last night. Thanks to the Vickery's, the Stapleton's, and Karen and Jackson for coming out to hang around the old campfire. It was like old times, almost. Thanks to so many for your prayers for the guys, too. Ryan is feeling so much better! Love, Les, Missy, Heidi, Will, and SuperRyan

CT clear

2009-05-22T00:39:00.003-04:00

Ryan was quite a mess by the time we made it down to Scottish. There was blood all through his hair and face. His shirt was soaked. All of that from a tiny cut taking two stitches to close. The best news was that the CT scan was clear for any bleeding on his brain. We will be getting platelets first then a couple units of blood as he was down in the 4's for hemoglobin.
We are certainly hoping that this will not become a standard reaction to this treatment. We are hoping to be out tomorrow. Les, Missy, Heidi, Will and SuperRyan

Headed to Scottish Rite

2009-05-21T21:59:00.002-04:00

Ryan had a pretty listless day. I'm sure his hemoglobin is low, but he has an appt. tomorrow at the clinic. I'm surprised his mouth hasn't been bleeding. That is our usual sign that he needs platelets. Anyway, I'm updating tonight to ask for prayers for Ryan and Les. For safe travels to SR, they've been gone about 20 minutes, for Ryan's head to stop bleeding, and for him to sleep quietly all night, and hey, throw one in for Les' nerves. He wouldn't let me go with him. We both knew I needed to stay here with Heidi and Will. They were traumatized seeing him have a seizure, and then there was a lot of blood. I know this update doesn't make any sense. It's all over the place. Ryan didn't sleep hardly at all last night, and Les went and laid down with him in his bed. Les had been back in the living room about 15 mins when we heard a loud noise. Will was the first one to him and he was in the floor, blood on his head, having a seizure. We all went him and talked him through it and got cold, wet cloths for his head. We couldn't get it to stop after about 15 minutes so Les put him in the car and took him down. I hope that explains our prayer request tonight. This is one side effect of the Nifurtimox. I'll update when I get more information. Thank ya'll so much your love and prayers for Ryan and Les. We love ya'll. Les, Missy, Heidi, Will, and Ryan PS I've been wanting to update to thank my friend Carla, and her neighbor and friend who owns Franklin Gun Shop. She came by earlier this week with a cap, a t-shirt, and a few air-soft/b-b guns. Thank ya'll so very much!!!

One out of the Hospital, one in....

2009-05-15T11:59:00.002-04:00

Missy spent last night in the hospital after having some blood work done and realizing her hemo was extremely low. They are finishing up her 3 units of blood and she should be checking out later this afternoon. She needs an energy boost as I will be in Columbus Ga with Will at the state soccer tournament Saturday and Sunday. Tonight we are headed to our county's Relay For Life event. Ryan is not selling Lemonade this year but he will be spending some cold hard cash with Heidi and Will ! They always have a good time with all their friends at Relay.
We had Ryan's weekly check-up at Scottish this morning. He is doing very well. Stephanie hooked him up with a "to-go" care package of a 5/8" x 22 port needle, Ryan's "special" port dressing, and hot packs, so when I convince him he has to go back to Vermont, we'll be ready! Thanks Steph! He was sure happy to see Dr. George also. Here's praying for an uneventful weekend (except for our team winning state!) Les, Missy, Heidi, Will and SuperRyan

Detox is a terrible, terrible process

2009-05-13T08:34:00.004-04:00

Ryan has been off of the Fentanyl and Morphine since Saturday. On Monday he started feeling slight effects of being off of the 24/7 pain killers. But yesterday the side effects really set in. Every 45min to an hour, he falls into an absolute pit of darkness for about 15min. He seems to for get who is and exactly where he's at. He becomes extremely emotional, sobbing and wanting us all to hold him at the same time. His balance disappears. He did not go to sleep at all Monday night but he did sleep a straight 5 hours last night. We are praying desperately that this torment that is tearing at his mind will begin to subside as soon as possible. It is heart breaking to watch. He gets so scared. He knows when it's just about to start and then falls over the edge and into a completely different state on mind.
But on the positive side...I just can't believe how quickly we were able to eliminate the pain medicine after starting the Nifurtimox. He has had no sign of the pain that was virtually disabling just last week ! It is just amazing. We will keep him on this program and slowly convince him he has to return to Vermont in a few weeks. Once he is feeling better, that shouldn't be too difficult. Please keep Ryan and Missy in your thoughts and prayers. Sincerely, Les, Missy, Heidi, Will and SuperRyan

All smiles this afternoon

2009-05-11T19:43:00.003-04:00

We had a slight scare with the platelets this morning. Even after a full compliment of premeds, about half way through the bag, Ryan sat up and said he tasted something in his throat, then something in his chest. The nurses came in and gave him another dose of Benadryl and steroid. His lip end eyelid started to blister and they gave him a shot in the arm of Epinephrine. That got him back to normal. He is so laid back when all the action is happening. I think its good calm nurses and PA's ! Another blood test then a bag of blood and a pep talk to Ryan from Dr. Sholler about coming back in 6 weeks (which Ryan wasn't buying) and we were out of the hospital by 4:15 ! He was all smiles at 4:16 ! On the suggestion of our nurse, we headed to Pizza Putt to celebrate. It's a place where you eat crappy pizza and dump tons of money into video games - HE LOVED IT :-D

We just got back and have to get ready to leave here no later than 5:45am. We get into Atlanta at 9:30. Will and Heidi are also coming down to pick us up at the airport. That makes us even happier. Next update will be from the ATL. Thanks again for cheering us on up here in VT.

Les, Missy, Heidi, Will and SuperRyan

Happy Mothers Day !

2009-05-10T09:52:00.005-04:00

Ryan called Missy first thing this morning to wish her a Happy Mothers Day. He really misses her. Just 2 more days !
We were getting ready to head out for breakfast when Ryan caught a glimpse of all his pills lined up as usual and burst into tears. He told me his life is crappy, it's all hospitals and pills. He has been fighting this for half his life. He feels shaky inside, anxious. So we rocked and talked for a while, tears still streaming down his cheeks. Then I realized that his 3 day Fentanyl is out and he is in withdrawals ! It has happened once before. We decided not to put a new one on and try to stay busy to hopefully keep his mind off of it. I already see a noticeable dip in his leg pain ! If we can stay off the Fentanyl, the next step is to eliminate the Morphine. That would be awesome. Narcotics quite simply change a persons character. I think the Nifurtimox is somewhat similar (neurologically) but at the moment it just feels to me, and Ryan, we're piling on the meds.
We just want to see him happy and healthy once again. With God's good grace along with caring Doctors with new medicine, we might just get there. That will be a great day.
So hears to mothers (and fathers) who are fortunate enough to have been given the responsibility to look after the most precious gift we have been given. Happy Mothers Day. Les, Missy, Heidi, Will and SuperRyan

Saturday, in Vermont, I think it was the 4th of July...

2009-05-09T17:33:00.005-04:00

A little something for Rick. A stormy Saturday has us laying low and keeping updated on Will's soccer tournament. They are 1 and 1. Ryan and I went to see the new Star Trek movie this afternoon. He really got a kick out of seeing a bunch of Trekkie's all dressed up there !
I do need to clarify on the scans I referred to yesterday. I was shown scans from an unknown patient. Their original upon entering the study and then a scan from 3 months later. There was a huge change in the amount of bone and marrow disease. Those scans were not Ryan's. Wish they were!!! Maybe we can be that fortunate.
We are headed out for dinner shortly. We have sure been missing our birthday girl and Heidi and Will. We did send them the birthday song via recording and got a good description of the inside of the ice cream cake we left for the kids to surprise her along with her present. Happy birthday Missy, I know this has certainly not be one of your best (well, since you met me at least...) but we will make up 1000 fold next year, promise! Well back to keeping Ryan busy and his mind off of being here. We are headed out for dinner. Thanks for all your well wishes to all of us. Les, Missy, Heidi, Will and SuperRyan

Da' Burr-ger

2009-05-08T15:34:00.005-04:00

At home, Ryan can't stand a new piece of furniture or a new picture or any change for that matter! So dealing with a new hospital and new nurses, physicians assistance, doctors, researchers, child life specialist and a myriad of other new things, puts him in a very defensive/angry mood. I hate that these new doctors can't see the awesome Ryan we all know. I'm afraid they won't either. It didn't happen in NY. After we leave the Hospital though, he is all Ryan. We can't wait to be catching the 7am flight out of here and headed home on Tuesday. I'm trying to get Ryan to eat but all his pain medicine is subduing it. We are hoping that once this Nifurtimox builds up in his system, the pain medicine will be reduced, then eliminated. I did get to see some before and after scans that show just how effective this new treatment is. We are very excited !! Will keep you posted and thanks for all your prayers, Les Missy, Heidi, Will and SuperRyan

1st update from Vermont

2009-05-07T16:31:00.004-04:00

Ryan should be waking up from his bone marrow aspirates now. They are done for the day. He got platelets this morning and had an MIBG - CT combination scan around noon. Today should be their hardest day. Tomorrow he should start the Nirfurtimox. I think it's a pill 3x a day. They have to take a cab from the Ronald McDonald house and have to wait a while for it to pick them up. It's kind of a pain. Ryan loved hailing cabs in NY. Please pray tonight for Ryan to eat and drink more and for him to have an easier time T-Teeing. The narcotics will definitely slow you down. That has been something of a challenge today. And please pray for Les' strength. I know this is very wearing on him. I talked to him just a bit ago and he hadn't eaten anything all day. Love, Les, Missy, Heidi, Will, and SuperRyan

Quote of the day !!!

2009-05-04T15:33:00.004-04:00

One of Missy's friends shot us an email this morning. This is a good sign !

"I was a bit skeptical in January b/c Jack had a lot of disease at that point, but the Nifurtimox in conjunction w/ chemo has almost cleared him completely and he is pain free and off all pain meds!"

We are praying that we have similar results with Ryan, please join us.
Les, Missy, Heidi, Will and SuperRyan

Headed to Vermont !

2009-05-02T14:55:00.004-04:00

We will know on Monday if we can begin a phase 2 trial in Vermont on Wednesday that utilizes Nifurtimox with a couple of chemo agents that Ryan has had in the past. Nifurtimox has been shown to lessen the side effects of chemo while at the same time enhance its effectiveness. The reason Ryan is eligible is that he has extensive neuroblastoma in his marrow and skeletal. (eligibility requirement #5). This Wednesday, he will do a MIBG/CT scan and bone marrow aspirates to verify. The study has us in Vermont Wednesdays though Sundays every 3-5 weeks for 5 treatments. Their will be no adverse side effects to this treatment so at worst, this will greatly lessen his pain, at best, it's possible to clear him once again. I have explained that these trips are to help replace the pain killers he is on, 24/7. Morphine, Fentanyl and Trilisate. All individually are for moderate to severe pain. He is on all three at the same time. I hate it.
Ryan had his garage sale today. He has been working on it for a month. You can see him washing Will's bike to get it ready for sale. He was raising money to get more airsoft weaponry for himself and Will. I offered to buy it all many times but he absolutely refuses. He wanted to make the money himself. He had many friends come by and pay prices that are not normally seen at your typical garage sale, if you know what I mean!! I will post a couple pics later. Thanks to Pat and Steve for your generous help! Ms. Wheeler, Gloria, Ryan's good buddy Matt and his family, Rick and Barre, Pat, Jill, Carla for making him very happy for all the effort he has put into it, all by himself. The other picture is of Will, and his entourage last night at the eighth grade dance. Seriously, he will really with Morgan. They had a great time. Thank you all again, and pray for great results in Vermont. Les, Missy, Heidi, Will and SuperRyan

YARD SALE TODAY! YA'LL COME!

2009-05-02T08:32:00.001-04:00

The right medicine

2009-04-30T08:16:00.003-04:00

The right medicine is what we have found. We have substituted his nasty, make me mean, Keppra, with Trileptal, another anti seizure drug. This morning he is much more agreeable ! even though at this very moment we are still at the hospital. We moved him on to 50ml Fentanyl patch for 24hr medication and he gets Toradol every 6 hours on top. In short, he is feeling much improved this morning !!! He got out of bed at 7 and started packing. The first time he has walked since we checked in. Yesterday, you couldn't even touch his legs. He has ordered breakfast and is patiently waiting. It is sooo good to see him feeling better.
Missy has gone to Emory with her friend Karen for Chemo so we likely won't see her until this afternoon. She spoke with Heidi and Will last night but we won't be discussing this with Ryan. He is too stressed and his mood needs to get back to his normal, lighthearted and carefree, funny self. Thank you for all the thoughts and prayers that been lifting us up. Les, Missy, Heidi, Will and SuperRyan

Ryan is our hero

2009-04-29T11:51:00.007-04:00

Doctor George told us the news this morning that Ryan is out of treatment options. The bone scan shows the disease has progressed throughout his body and that his poor counts cannot recover from any type of chemotherapy required to simply battle it. He is in severe pain as the time wears off on his medicine. We are spending the night here again to get blood and platelets. The extra time will also help with the transition from iv pain killers to oral. Please pray that we have the ability to make Ryan as comfortable as possible. That he can have fun with his friends and family and we have half his strength and fortitude to walk bravely beside him. Les, Missy, Heidi, Will and SuperRyan

101.8 - Oh no

2009-04-29T00:06:00.000-04:00

Did we just buy ourselves another day ???

Ryan is "fit to be tied"

2009-04-28T16:05:00.003-04:00

Nothing is going his way today. First the Neurological team has slapped him back on Keppra and B1 for seizure prevention. He adamantly denies ever having one and is positive there isn't one in his future. He has let everyone here know, he is here for "PAIN, NOT SEIZURES !!" We made it through his Nuclear Bone Scan. He did sooo well staying perfectly still even though we can't eliminate all the pain. I have been doing my best to convince him he WILL be doing the MRI at 5. This has been difficult to say the least. Now Dr. George comes in, one hour before the MRI and tells us we are not going home ! He has assured us that we will be first on the checkout list in the morning. Can you imagine the state of his PO'd-ness after that! (that damn Keppra doesn't help either).
No results back yet from the bone scan but I could see it was not good. Dr. George is hoping to have both scan results first thing in the morning. Please send Ryan the strength to just get him through tonight and him finally getting home should carry him on tomorrow. Oh how I wish I had some good news, just once. Ryan has so many friends that care so much about him out there, for that, we are very thankful. Sincerely, Les Missy, Heidi, Will and SuperRyan

What a stressfull day

2009-04-27T18:45:00.002-04:00

Thank you Erin for providing our friends and families a "real time" update first thing this morning. Things were moving so fast down here at Scottish Rite.

The crazy thing is, I would have normally waited to take Ryan to the clinic until after 8am. This saves Ryan all the hassles that the emergency team put him through. Today though, something just made me say, "we'd better go now" 3am. What luck to be in Emergency when his seizure happened.

Nothing seemed to be out of the standard routine. We were in a dark room and it appeared Ryan began to stretch and turn to look at me. His eyes were open so wide and I made a quick quip. After a couple seconds of processing and I realized the hollow look in his stare. I hit the call button and opened the door yelling code blue. A four person staff was in the room, working in under 10 seconds. It is scary to be there and almost as scary reliving it right now. The seizure and morphine combined to put him out for a few hours of much needed rest. Missy made her way down to the hospital before 9am. All the tests seem to show stable signs. He will start back on the anti seizure medicine, Keppra. He is in incredible pain in all his major muscle groups, a pain that morphine hardly eases. He has it every 4 hours. Kristen Connor popped in to see if there was anything she could do , and Smith and Julie stopped by to help cheer him up. They ended up driving Missy and her car home tonight, as Missy is hardly doing much better than Ryan. We are hoping to be out tomorrow and back at home, safe and sound. Thank you all for your kind words, thoughts and prayers. Sincerely, Les, Missy, Hedi, Will and SuperRyan.

Erin's post

2009-04-27T08:45:00.000-04:00

Hi everyone,
Missy called me this morning and asked me to update the blog. Ryan spent yesterday on the couch with severe leg and arm pain and could not keep anything down. He started to run a fever in the middle of the night, and Les took him to Scottish Rite at 3 AM. Missy told me that she talked to them earlier and they were both in tears. Ryan had a seizure at some point after arriving at Scottish Rite. His pain is so high that they have basically knocked him out with strong morphine. They will be staying in-patient at Scottish Rite until the pain can be controlled and a plan formulated. Missy is driving there right now. She asked me to post this information and to ask for your prayers. They are obviously very worried.
Erin

whodunit??

2009-04-24T08:47:00.002-04:00

Somebody left me some flowers in all my pots while we were gone. What an awesome surprise to come home to!! Please let me know who you are cause it'll drive me nuts not knowing who to thank!! They are just beautiful, and they're out by the pool, too. Thank you so much. We came home a day early. I had to call my doc Wed. afternoon as I was in so much pain and couldn't get any relief. She thought it sounded like a kidney infection and wanted to go to the ER so I could get an antibiotic. My hgb was only 6.4 so they kept me overnight and gave me three units of blood. I am so glad that drive home is now behind us. Les took Ryan to the clinic this morning to see what his counts are. His gums have bled a little bit so he may be needing some more platelets. I changed my appt back to today so maybe I can get my chemo. Karen and I are gonna drive down and check it out. Thanks for checking in on us. Love, Les, Missy, Heidi, Will, and SuperRyan

A week without a hospital, not quite...

2009-04-22T21:09:00.002-04:00

Missy has had a lot of pain in the left kidney area the last couple days. She called her Dr at Emory and they suggested a quick trip to Emergency, haha.
2 hours in the waiting room, 1 hour in the emergency room, then the Dr finally came in. They shot her down to RT for a CT scan and a couple of x-rays. Her initial blood work came back very low, translation, spend the night. She will be getting 3 units. We are still awaiting the rest of the results. I just made it back to the Hotel. The kids hardly new we were gone. They are so independent. They ordered room service and are watching Idol ! Great kids (most of the time :) I will more as I get it. Les, Missy, Heidi, Will and SuperRyan (who is doing fantastic)

more pics of day 2

2009-04-21T20:07:00.002-04:00

This has been how I've felt a few times today and yesterday!! and NO, Les wasn't on the log ride with two hot girls by himself. Will was in front! :)

Our only bummer is that we didn't win a gigantic "Balto" at one of those rip-off midway games!

Universal pics

2009-04-21T19:51:00.002-04:00

Pictures from today. We had a great time at Universal's Islands of Adventures. We got totally soaked on one ride. Oh my Goodness!! Was I really happy for just a bit that I didn't have hair? Les took the kids to get some dinner and I am resting. My mom made an appt for me today for accupuncture on Saturday. I never thought I'd try it , but I'm getting pretty excited about the thought of pain relief. I'll let you know. I'm gonna add a couple more pics. It's so slow if you do more than three. Love, Missy

more pics

2009-04-20T19:24:00.001-04:00

PICS FROM UNIVERSAL

2009-04-20T19:15:00.003-04:00

It's a shame the kids don't really know too much about Jaws, or Beetlejuice, or ET. I think their favorite rides were the Simpsons and the Mummy.

Intrrrrrrooooduuuuccccing BALTO!

2009-04-20T19:04:00.002-04:00

This is Balto!! We've known him since the day he was born and have been able to play with him and watch him grow. He's really only about 5 weeks old, but his mom is pretty much done with him and his siblings. He was a gift from Rick and Barre'. We're missing him already.

His mom is a Siberian Husky (maybe 35 lbs) and his dad was a neighbor German Sherpherd. All I know is Sandy's daddy was a German Shepherd and we got her Easter weekend, too, and she turned out to be the best dog ever! So I'm taking that as a good sign.

Looking for good things.

2009-04-15T22:22:00.002-04:00

Ryan filled up his quarter book yesterday. He was pretty happy about that. Can you tell? I think he loved being FINISHED ! The other picture is of my tulips Les bought me. Aren't they beautiful? I love bright yellow tulips. They've done their fare share of perking things up around here! I'm hoping tomorrow is a better day. I've been sick every day and haven't been able to keep anything down. I've been trying different pain meds and nausea meds, but haven't had much luck yet. Maybe tomorrow?? Love, Les, Missy, Heidi, Will, and SuperRyan

Surprise, Shock, and Dismay!

2009-04-11T09:23:00.003-04:00

It's been a crazy past couple of days. The SURPRISE is that Ryan is at the beach with the Lighthouse. As we headed down Thursday morning, we got a call from Smith that he was gonna go down for 3 days, so we offered our baby up for some fun!! My mom met us at Gwinnett with him. He still wasn't feeling that great, but he was pretty excited. He's coming home tomorrow. The SHOCK is that Les' high school friend who has been in Tanzania doing some missionary work has suffered a major stroke. How can that be?? We are still working on the details as you can imagine. I know they are trying to raise money to get him back to Canada, and I hope to post some of that info we maybe we can help. The absolute DISMAY is in the passing of Erin Buenger. I haven't thought of much else in the past couple of days. Please visit her website and offer some encouraging words to her family. She was such a full-of-life kind of girl that just had a way of touching your heart.

Today promises to be a busy day with soccer and cleaning up around here. I'm hoping some flowers are involved! Please keep praying for us and for our friends. Love ya'll! Les, Missy, Heidi, Will, and SuperRyan

BLAH!!!

2009-04-06T10:49:00.002-04:00

Ryan and I have both just felt like dirt for several days. The pain patch seems to be working on his leg pain. I've emailed for a pain med for me. I can't take anything with tylenol or motrin. Even some of my prescription meds have tylenol, so I've been avoiding those, too. I think the nausea is the worst part, though. Just nothing brings any enjoyment, and that has been tough. Please pray we feel better soon. Love, Missy

Could It Please Get Better?

2009-03-30T21:44:00.002-04:00

I didn't get to update again yesterday with pics of Ryan's hours and hours of work getting ready for his yard sale. He has bagged up all his old toys he's tired of, priced them, and made a sign with his dad and grand-daddy's help. I guess that will be the plan for this weekend. We're starting chemo today a long way from where we should be in the blood count race. We had them checked today and
WBC 1.6
HGB 8.9
PLT(platelets) 11,000
ANC 700
Platelets are below transfusion level at the get go. We've never ever started this low, but we don't really have a choice. I'm hoping to just take him in to the clinic and get blood and platelets. Please pray that he gets through it without any trouble. Nothing else makes sense. Love, Les, Missy, Heidi, Will, and SuperRyan

Our Dashing Gent!!

2009-03-29T09:59:00.002-04:00

The three of us had a good night together. He's even already looking to next year. I am so surprised, but not disappointed. I'm gonna update again today with Ryan's news. I'm thinking it's a garage sale. You won't believe what he's been up to!

Our new round one is done.

2009-03-25T02:15:00.002-04:00

Our schedule got a little off yesterday when they bumped up my appt at Emory, but my dad came through for us as he always does and took Ryan to see Dr. George. Sounded like the usual upbeat day from just the email we got back from Dr. G. We have been a little concerned with some bumps on Ryan's head just over where he had the Gamma Knife. We had emailed him with our questions, and we all think it is the titanium screws possibly working their way out. We're going to watch it for now, but Ryan was ordering himself a CT scan for this morning (that just happened to fall at the exact time his home-bound teacher would be here, Sorry Mrs. Jill!). His counts are still pretty low so we're going to recheck them on Monday, and probably move ahead as scheduled regardless. Can't give the *&%$#ing NB time to gather strength. Ryan apparently had a conversation about not getting accessed for his chemo, so we're looking into taking it by mouth. I'm gonna put a question out on the list-serv just to see if anybody has any experience with that. Otherwise things around here are rolling on. Will did go to soccer practice on Monday and had a good little work out, but was pretty sore today. I'm worried his heart just isn't it right now. We'll just have to see. Again, day by day! His spring formal for Perfectly Polished is this weekend, and I am just trying to wrap my head around all that that will entail. It will be a little bit easier, just picking up his tux (tails, this year! Won't he look sharp!) and not worrying with Heidi's dress, shoes, hair, makeup, etc. etc.etc.! The kids are out of school on Friday for a workday. Who knows if Heidi will get her driver's license or not this weekend. We've moved her appt. back the last couple of Fridays cause she can't get all the paperwork together and get the class finished. She's had lots of homework, and she doesn't get home till almost 6 everyday after soccer. They had a game Monday night way above Gainesville, but lost. I felt bad for them. They beat Buford Saturday afternoon which was a nice win for them. Anyway, thanks for your thoughts and prayers. Please pray for Ryan's counts to rise. Love, Les, Missy, Heidi, Will, and SuperRyan

A Soccer and Swim Kind of Weekend.

2009-03-22T09:21:00.003-04:00

Ryan is doing great. He doesn't slow down too much. He went back to work with Les on Tuesday and they had his counts done at Coach Gary's clinic. He was happy to see Paige. She is so great with him. His hgb was over 9 and wbc over 2, but his platelets were only 15k. He has an appt at the clinic on Tuesday for a recheck. He played golf on Thursday with our friend, Rick. He had a great time and he hasn't stopped talking about it yet. Thanks, Rick!! We took Will to his rec game yesterday. He was able to warm up with the team and he played for just a few minutes, which is a HUGE improvement. We're hoping he'll be able to go back to practice this week with some modifications. Heidi had a game late yesterday afternoon in Gainesville, and her team beat Buford, which was unexpected, at least to me! Ryan's home bound teacher is coming back tomorrow. We have a swim team party today which should be fun for the kids. He still has another week off chemo. Hopefully, it is working. Thanks for your prayers.
Love, Les, Missy, Heidi, Will, and SuperRyan

The boys are slowly getting better.

2009-03-15T09:56:00.002-04:00

Here are couple of shots Dawn sent me from Friday night's St. Baldrick events. Thank you, Derek. He was able to meet his goal and even went over a little bit. I think Dawn said he went over $2700! It's the passion and efforts of people like Derek, and those of you who sent in money, that will help us find a cure. Ryan is feeling better. He had a script for Zofran in the computer at Publix. Will is feeling better, too. He went to school one day last week, but his feet were so swollen when he got home, we had to make him stay home the rest of the week. Hopefully, he'll be back tomorrow. He hasn't thrown up in several days. Les and Ryan went out early yesterday and picked him up some golf clubs. Unfortunately, the rain is going to keep them from hitting some balls today. We have to get counts checked locally either tomorrow or Tuesday. Thanks for your prayers for us. Love, Les, Missy, Heidi, Will, and SuperRyan