Follow along and read about how Ryan spent his final days surrounded by those he loved the most... his FAMILY.

You can follow my blog at: Our life in Letters to Ryan

November 26, 2009


I think every year at this time, we all remember what we are truly grateful for... but the past 6 months have REALLY taught, shown and made us realize what we are thankful for. It is really easy to get caught up in the craziness of life and to begin taking things that you are grateful for, for granted.

Although we would have NEVER wanted this trial in our life, we are grateful for all the blessings that have come as a result. Of course a gratitude list could go on and on... but here is a small list of what our family is grateful for:

-compassion from friends and extended family
-spending each day together as a family
-great medical care
-having a home to live in and food on the table
-70 degree weather in Arizona
Max: "My daddy"
Hallie: "For my dad to be feeling well and at home with us"
* A loving Heavenly Father that hears and answers prayers*

Happy Thanksgiving

November 17, 2009

Someone had a BIRTHDAY today!
Max Hunter Hess
7.3lbs* 20.5in *10:17am
I cannot believe in 3 years how much our baby has grown. He has always been a tender heart and SUPER mellow, but is still VERY silly and LOVES to make us laugh.
"Howlie"... one of his best friends

Max loves anything with a motor

How old are you again?

Ryan couldn't resist playing with the new toys

Happy 3rd Birthday Bubz

November 11, 2009

Still here...and chugging along HAPPILY

I know it's been a good 2 weeks since I last posted... nothing to be worried about. We've all been a little busy and just thoroughly enjoying our time with Ryan.

Ryan still comes here twice a week and usually spends about 2+ hours at each visit
Its not that Ryan loves coming to clinic, but he really appreciates being surrounded by other patients who are fighting a similar battle and a staff that really love and care about what they do.

Right now Ryan's counts continue to stay about the same. One day something may be UP and something else down a little- it is completely normal for his counts to fluctuate. We have to remind Ryan that just because one count drops and/or another rises, it does NOT mean that his cancer is back or growing! It is really easy to look at the glass half empty (which Ryan believes is being realistic)... but in this situation, we HAVE to think positively- Ryan is BEATING and WINNING this battle!


So what ELSE has Ryan been up to?

He's been out and about

Chillin' in Green Valley, AZ @ the local strip mall
(wearing a shirt a fellow cancer survivor made for him)'s not.
But when you get lemons, you MAKE lemonade!


Ryan has been sporting the latest fashions in socks:

Compression socks have become a new BEST FRIEND because of these:
(since I took this picture the fluid retention has gotten MUCH worse, so this picture shows his foot/leg on a GOOD day!)
Its crazy... Ryan is on immunosuppressants so his body doesn't reject his donor blood. The immunosuppresants cause high blood pressure. He is on meds to help with the high blood pressure and the high blood pressure meds causes the water retention in his feet, legs and ankles.

Lately Ryan's energy level has been pretty good, but his feet and legs hurt so bad that he needs to be seated with his legs elevated to ease the pain.


Ryan was able to to celebrate Halloween with his FAVORITE princess, monster and witch:

Sadly, his legs were hurting TOO much to go out and supervise the trick or treating with the kids, so he stayed back to pass out candy


The next day he was feeling up to doing a little grilling
...something he enjoys and missed doing this summer.

He was feeling so peppy that he thought he would be feeling up to doing some car detailing later in the week. Here he is taking inventory of his car care products:
(remember...he LOVES cars and anything that has to do with them)

Yup...he's even been doing some of this:
supervised of course!

Ry helped celebrate an early birthday:

Since my parents were here, they wanted to give Max his birthday presents since they wouldn't be here for his real birthday...


Ryan was also able to get out and see the final performance from Hallie's theatre group

notice anything different about Hallie's smile?

Someone is missing another front tooth:
Ryan loves seeing this toothless grin

Then we got ready for this HUGE event:

In case you didn't know... we have some WONDERFUL friends here in Sahuarita. They got together and formed the Team Ryan Fundraising Committee. They spent MANY MANY hours planning, organizing and advertising in order to put on this amazing event. Our family is extremely grateful for the all the time and HARD WORK of our loving friends.

*** THANK YOU ***

Here is a picture of most of the helpers for the event:

the driving force behind all of this.... Thanks Min!

some pictures of the event:

REWIND, the fantastic band who entertained us during the event:
Thanks Sarah!

Ryan checking out one of the tables with his sister Jen

So many people and businesses generously gave items to be donated for the auction

One of the tables:

The KEN OLSON FOUNDATION - a huge contributor to TEAM RYAN
The Ken Olson Foundation helps those who are fighting cancer by granting a wish or giving aide. The foundation started Project 34, which will help 34 people- 1 person for each year of Ken's life.

THANK YOU Ken Olson Foundation!

Thank you again to all those made the event SUCH a huge success: the committee, the band, the extra auction helpers, the MC's, and all those who came out to support Ryan and our family.


Then we made some time to go to Madera Canyon:

Jess and Jen
Ryan's sisters and kids drove over from SoCAL to help out with the auction.

Off to the park with the kiddos:

There, he used a sweatshirt as a makeshift beanie because his head got cold


Ryan is the gardener in our home. The sad thing is he cant really do it while on the immunosuppresants. So he "tried" his hardest to keep his distance while his mom and Max planted away...

Some of the fruits of his labor that we enjoyed with our dinner:

Today he came home from clinic with some PRESENTS...
Heparin flushes for his catheter

and at night he is exhuasted and its time to rest these:

Tommorow is another day, another day to be thankful...

Keep Fighting


Q: Is Ryan showing any signs of Graft VS Host Disease (GVH)? *What is Graft VS Host?
A: No, Ryan is doing really good and not showing any signs of GVH. *Graft VS Host is where the new donor cells attack the organs and tissues of the recipient.

Q: Has Ryan had any hearing loss?
A: No, something we are VERY grateful for. His hearing is just fine. As we were sitting in clinic one day, another patient came in and sat down by Ryan. He was saying that he couldn't hear anything and he was REALLY upset about his loss. Ryan and I both looked at eachother and were thinking the same thing. It was a reminder of how blessed we really are.

Q: Why did you choose this song?
A: Because Ryan loves it...we all LOVE it! One of these days I am going to snap a picture or video of Ryan actually shaking a hip or two! We LOVE to Par-tay!