Well its finally here. We will traveling to Houston next week to begin the testing for the amazing treatment that MD Anderson has to offer. We talked a little with the doctor and she confirmed what we had heard which is great success with odd cases like my own where remission has been hard to get with traditional chemotherapy. We wanted to say thanks to everyone who has contributed to the fund to help us pay for next week. Thanks to everyone who contributed we have over $37,000 to help pay for the initial testing. I would have never believed we could raise almost the entire 41k in just 2 months. thanks so much. Continue to pray for Rosemary and I as we travel to Houston that this will be our last treatment that i need. I feel very confident that we are close to finally beating this horrible disease. See ya and thanks again.
Houston here we come.
March 30, 2009 by eric
Filed under From Stephen
A Poetic Interlude – John Rybicki
March 24, 2009 by eric
Filed under Stephen's Family & Friends
Dear friends of Stephen:
So, I read this book of poems called We Bed Down Into Water, by John Rybicki, and was totally moved. Rybicki lives in the inner city of Detroit, works on cars and in paint factories and with traumatized children and cared for his wife, Julie, until she passed away in spring 2008 from cancer. They have a son.
You will find some of Rybicki’s poems below. But first, I want you to see what he said to me when I contacted him and told him about Steve and how I wanted to use his poems.
Just goes to show: there is always meaning. We never know who we may touch through our lives, or how.
God bless you.
Kate Asche
Kate,
John Rybicki here. This letter from you put tears in my eyes after so hard a day here. My face is shaking.
Your letter is such a gift. You have no idea.
I lost so much with Julie going down at last after so valiant a fight, but knowing the poems have reached some hearts that need them….you have no idea ….
I swear I’m printing this letter to carry with me, to read whenever I feel like a bruise crawling across the ground….You make me feel like my life has mattered! Do you have any idea what a blessing that is? You poured holy water over my sore heart.
I want some light and hope to be born out of all the suffering that went along with Julie’s cancer. She (and cancer) taught us to live, to savor with abandon every waking breath.
I am overwhelmed and overflowing. Bless you for blessing me.
Love. That is all Stephen’s wife or any of us can do…is love and care for each other from the outside in this life.
How can I ever repay you for this gift? I send my very heart to you and yours.
John
**
Poetry from We Bed Down Into Water by John Rybicki (http://johnrybicki.com/)
Outside the Bone Marrow UnitIt has been over a year since Julie waved
aside the wheelchair and walked in her own bright bones
out of that sterilized chamber: the butterfly
doors swung open and she walked out into air
that two weeks earlier would have killed her.
I’m worried that writing about cancer,
thinking about cancer, will start cancer
growing again inside her. Where in that sweet void,
where in those wide heavens
could it be hiding?
I stand on my toes and kiss one of my angels,
and in that kiss beg her
to take a stiff broom to this talk:
sweep the cancer back across the heavens;
please don’t miss one crumb of it. Sweep
the cancer back into its box of oblivion.
Love Is the Heel That Knocks Hard Against the Floor
I was raw with visions this
day of a God with no skin,
so I held my cup out
our kitchen window
and listened to it rain.
I’d get revisited by the terror
in the silence of a room
without her in it. Logic slips,
panics the rational mind
which whispers back,
you just heard her pony
her heels across the kitchen floor
fifteen seconds ago. Where’s she going?
But so many cities have burned
since then, you rush,
you fullback from room to room
crying into an empty house.
“Dude? O Dude?” she says at last,
and you kiss the sounds on the mouth
before it washes away.
The Story
Someone floats through your middle
with a spine like a candle, a nightgown
over it and you see through the simple talk,
the blood bell gone again like fading action,
the slug you moment in a story, then after
when the body hums warm and electric
with what it can’t hold on to. Let’s say
the very action of living—heart and lungs—
is a printing press of selves.
If you are lucky, flashing, maybe millions
of the selves who loved the girl coalesce,
recline at night, and lie down in her circle,
your circle still opening for her. Some
nights you blink to find her mouth biting
through the same pear,
that sweet opening, that new flavored kiss.
If you are lucky, you press on with the same
wobbly shopping cart the two of you
pushed out of Egypt or ancient Rome,
pushed out of sparking glaciers when the body
first filled with such frightening thunder.
And when the curtain darkens to blood,
the old wooden porches with their swings
rock as if the wind were kicking its legs.
Are you aware? Each day one more hankie
gets tugged up from the blood house,
and you are one day less in this hard Eden.
Julie Ann in the Bone Marrow Unit, Zion, Illinois
Ah Dame, I don’t know how else to love you
so I just start juggling. I’m on the street
three floors below your hospital window,
lofting fish or birds that graze against my hands
and fly off, juggling cancer cells and carnations,
slipping in the bowling pin
we snuck out of that alley in Maine. Then I’m juggling
freight trains, and angels, and elephants,
dropping them all. I don’t care. So long as you
can stand near your high window and laugh,
so long as you stand near your hospital bed
clapping your hands.
A Stephen Story – Rebecca Gardner
March 16, 2009 by eric
Filed under Stephen's Family & Friends
My good friend and baseball buddy, Eric Nelson, has a very good friend named Stephen Shirley who is currently battling a very nasty form of Hodgkin’s Lymphoma. Similar to the often fatal Non-Hodgkin’s Lymphoma (which my father has remarkably beat three times now — go dad!!), Hodgkin’s Lymphoma is typically a much more beatable form of the disease causing patients to generally undergo one round of chemo and then enjoy a remarkable remission rate in the 90th percentile (like my colleage Dawn Cole — yay Dawn!)
Unfortunately, however, Stephen has not been so lucky with his form of Hodgkin’s Lymphoma. He is a young man yet has been battling Hodgkins lymphoma for over two years. Stephen’s doctors (including my dad’s oncologist Dr. Quadro) have treated Stephen with several different forms of chemotherapy, and he is currently undergoing a stem cell transplant that will be followed by radiation and a second stem cell transplant. Unfortunately, none of these treatments have yet eradicated the cancer that is in Stephens’s body.
Stephen is trying to get into M.D. Anderson Cancer Center in Houston, Texas. A hospital on the cutting edge of cancer treatment, M.D. Anderson is having amazing results with cancer patients with difficult cases like Stephen’s. The treatments at M.D. Anderson are extremely expensive. Stephen will need $40,000 just to start treatment and the total bill for treatment will be much, much higher.
Stephen’s friends are pulling together to try to raise the money for Stephen’s treatments and I’m writing to ask for your consideration of a donation to the cause. I know that times are economically difficult for a lot of people, but any size donation in this case really will help Stephen.
If you are able to help, there is a Trust Fund called “The Stephen Shirley Medical Fund” at Wells Fargo Bank and the trustee for the account is Rosemary Shirley and Bob Kariya. If you can, please consider depositing a check at Wells Fargo to this account or sending it to my friend Eric at 9286 Madison Ave in Orangevale, CA 95662, or visit www.savingstephen.com for more information or to make a donation on line.
Thank you for taking time to read this and to consider helping a young man in need.
Sincerely,
Rebecca
A Fund update: Over $34,000
March 15, 2009 by eric
Filed under Stephen's Family & Friends
Hey everyone,
Just wanted to give everyone an update on where we stand with raising the initial $41,500 that Stephen needs for treatment in Houston at MD Anderson.
As of Friday there had been over $32,000 in donations made, both online and to the Wells Fargo trust account.
Tonight, with a HUGE thanks to the Beach Hut Deli @ Midtown (24th and J st…if you’re in that neck of the woods swing by, grab a sandwich and say thank you) we were able to add $1,327 to that total.
So, that brings the total amount raised to over $34,000.
It’s been amazing seeing this all play out. A few short weeks ago$41,500 seemed like an almost impossible total. Now that goal is in sight and it’s been made possible by a lot of people having a strong desire to take part in Stephen’s story.
Simply saying thank you doesn’t seem like enough, but at the moment it’s all I can think to say.
Thank you.
It’s been a while…
March 13, 2009 by eric
Filed under The Cancer & Treatment
And now that you all have that song stuck in your head I just wanted to fill you in on a few things that have been going on.
Couple of quick announcements:
1) The Plasma Cannon show on 3/1 was awesome. During the set, the band had the bass player read Stephens latest blog to the crowd while the rest of the band played on in the background. Shortly thereafter Matt Connolly of Plasma Cannon encouraged everyone to visit the website or he’d “come to their house”. For some reason traffic to savingstephen.com has been up exponentially since the show. We are not entirely certain why.
Matt is also currently putting together another show for Stephen for sometime in April. We’ll keep everyone posted with details as they become available.
2) New blog post from the boy outside of the bubble. You can read that on his blog, or it has been cross-posted here at savingstephen.com
3) If you can, come by the Beach Hut Deli on J Sreet tomorrow night. It’s going to be a blast. Downtown comes alive with Second Saturday and the Beach Hut has been gracious enough to open their doors to us. We’ll be hanging out from 6-11pm, listening to Colonel B spin some tunes and raising money for Steve. We’re doing an art raffle for people that make a donation to the fund and get tickets. Help Steve and you could walk away with some art. So come get some culture, hang out with us and wander around downtown.
What: Saving Stephen @ the Beach Hut Deli Midtown
Date: Saturday, March 14th, 2009
Location: Beach Hut Deli Midtown
Street: 2406 J Street (map)
City: Sacramento
Hope to see you there!
Plans are always changing
March 13, 2009 by eric
Filed under From Stephen
Over the past 2 years i have learned that while its ok to make plans i should never expect them to actually go perfectly to plan. As of today we have a plan for radiation and our first visit to Houston. I will be getting another pet scan this monday which has become a sort of dreaded place to go. If it’s good news we always have to temper that since every time its been followed by bad news. Then tuesday i will see Davis and be allowed to finally be in public again and they are taking out the last borg implant for now. Then thursday i will have my radiation walk-thru where they create a template for me to lay in while they shoot the radiation so they can be very accurate about where the radiation goes. Then the following wednesday while waiting for the radiation planning and all that to happen we will visit MD Anderson for an initial visit to get there opinion on what i should do next, or what type of therapy’s they offer that we can not receive here locally. Hopefully if all goes to plan i would start radiation the following week. My radiation is 25 times so it will be everyday for 5 weeks straight. The side effects for the first few weeks are supposed to be minimal but the last few i might have some almost sun burn type conditions on my skin and i might have sore throat and stuff since they will be shooting radiation in my throat where the Hodgkin’s has shown up multiple times. So that’s the plan but could change. I pray it doesn’t. This is the soonest everything could happen and I don’t need any more delays after all the delays i have had the past 2 years. I don’t want there to be any more time for the growth to accelerate again. still stuck here until after next tuesday. can’t wait to get back over to church to say hi and thanks for the support and maybe even try to play sometime during my radiation if i am not too beat up and you’ll have me. thanks again for all the continuing support and prayers. I am getting there, just slowly.
stuck here
March 6, 2009 by eric
Filed under From Stephen
So because my body is still so worn down and susceptible to getting sick, i basically can’t leave the house for at least a month past my transplant. If i do i have to wear a mask anytime i am indoors and i am supposed to stay away from any large group of people. Hopefully that will be over soon. We met with Davis already and my bloodwork looked great. That’s good news that i am recovering fast as always. They are planning on having me start radiation as soon as 2 weeks from now. Our hope is that we can do the radiation for a few weeks and then right around the time i am finally ready or able to start traveling or being around crowds then we can go to Houston to visit MD Anderson. We are very excited to see what different therapy’s MD Anderson can offer. One of the things they are doing is working to create a vaccine for each individual patient so the cancer does not come back. They are also working to create better ways for your own immune system to actually target the cancer. Rosemary read something that the average person fights cancer at least 3 times, i think was the number, during there lifetime. Most people’s immune systems are able to recognize and destroy the cancer. In my case my system was not able to. The hope is that in doing the transplant my system sort of was rebooted. Almost like pulling the plug on your computer when it’s just not running right. That’s why they had to take me to the brink of dying as far as my immune system goes and then brought everything back with new stem cells. But on top of the transplant we would like to further that by some of the treatments MD Anderson offers that no one else in the area is working on at this point. Still having some side effects from all the drugs. My entire body is still a bit shaky and especially my hands are numb. It’s been two weeks as of today since i have had the morphine so i hope soon that, that wears off and takes care of the problem. Also having weird pain in my feet. It could be walking more since being home and another thought was that all the nervous anxious tapping i have been doing coming off the morphine might have made my feet sore. It will be awhile until i am not bruising and getting tired or sore from just about everything i do. So there’s a couple things to keep praying about. Other than that Just trying to relax and rest so i get ready sooner to get moving. Can’t wait in two weeks to have the pic in my arm pulled out. Might be able to go swing a golf club finally again in a couple weeks. That would sure put a smile on my face. See ya
An In-laws Impression
March 3, 2009 by bob
Filed under Stephen's Family & Friends
Below is a contribution Stephen’s In-Laws Bob & Mary Kariya.
Who is this young man? Rosemary, where did you find him? How did you meet him? What does he do? Is he a Christian? Why does he have an earring? He’s a musician??? A thousand questions from protective parents? AND HE DRIVES A LOUD CAR; RAN OUT OF GAS; WAS PULLED OVER BY THE ROCKLIN PD AFTER VISITING OUR DAUGHTER. Who is this young man!? His name is Stephen, Daddy. WOW ROSEMARY, HE PUT AWAY 10 TACOS TONIGHT; He was hungry.
Our first impression filled with many questions, but each placed to rest as we have come to love Stephen as our son. Rosemary, Grandma Bachan wants to know why is his hair standing up?I think Rosemary must really love Stephen. Stephen, what did you say? You are asking me for my daughter’s hand in marriage? When? Where? What are your plans? How are you guys going to make ends meet? You’re going to Capital Christian and then on a Band Tour? What are you going to do for money? Sleep in the car? Rosemary is not going!
What do you mean your car broke down and you were stopped by the Shasta County Deputy. Where? When? Why?
Oh No! This is it, my last daughter is getting married. I’m walking down this wooded path to the altar to give my daughter’s hand in marriage. Daddy don’t cry. You better not cry! But Rosemary, I’m putting the trust, care and nurture of my last most precious gift that God gave, to this young man. I’m loosing my daughter,……… but gaining a son-in-law. (Trust in the Lord with all your heart …………………..Pr: 3;5)
Golf? I have not golfed in 30 + years. Golf lessons? You want to go play golf? You bought me golf shoes? When? Where? Why?
You want to go where to play Golf? Where? When? Why? HAWAII??????? My score is over 3 digits and I leave divots everywhere I go; even on the putting green. So what? What do you mean just to have fun. Take our clubs too!?
What do you mean cancer? Where? When? Why?
“Trust in the Lord with all your heart and lean not on your own understanding. In all your ways acknowledge Him and He will set your path straight” Pr: 3; 5-6
Stephen, we have come to respect you and am honored to be called your Father / Mother in-law. We love you as our Son.
Dave and Marlene, you have a fine son with a heart of gold. Thank you. “For I know the plans I have for you declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future.” Jeremiah 29:11
- Bob & Mary Kariya
Bone Marrow Donor Drive Information
March 1, 2009 by eric
Filed under The Cancer & Treatment
Hey everyone,
I just got an email from the Shirley family with information on a bone marrow donor drive that is taking place in the next couple of days.
I’ll let them give you the details.
Hey Guys,
Is there anyway to get a quick word out to people about a couple of upcoming bone marrow donor drives here in the area, if they are interested. There are 3, one is Monday, the other is Tuesday/Wednesday.
—————————————————————–
Monday’s is at Sac State:
National Marrow Donor Program Northern California & Northwest District
Telephone Numbers:
(510) 834-8500
(800) 471-4619
Drive Name:
(BS) Sacramento State University
Drive Location: Redwood Room
Address: 6000 J Street
Sacramento , CA 95819Drive Date: Mar 2 2009
Drive Time: 9:00AM – 2:00PM
——————————————–
Tuesday/Wednesday is at American River College:
Drive Name: American River College
Drive Location: Cafeteria-BanquetRoom
Address: 4700 College Oak
Sacramento , CA 95841Drive Date:Mar 3 and 4th, 2009
Drive Time:9:00AM – 3:00PM
http://web.arc.losrios.edu/~health/Events.htmlThanks!
