home at last

Directly from Stephen’s Blog: Silhouette of You

well i am finally home. I actually got home tuesday afternoon. still a lot of recovery to do. I am totally exhausted still and very weak. even opening a simple bottle or carrying a plate of food is a chore. I am also still having very strong withdrawal symptoms from all the drugs they had me on in the hospital. I just don’t seem to do well with the pain killers in particular. On one of my other trips it took me almost 2 weeks to stop shaking and feeling outside my body. i am having similar symptoms this time i think form the morphine they had me. sort of a pins and needles feeling constantly plus its almost like i can hear the blood coursing through my body. very weird feeling. I am excited today though because i turned on the tv and spring training baseball is on. its a nice feeling to know that spring is almost here and maybe i’ll be able to get outside and enjoy it soon. thanks for the continued thoughts. If you want some specifics to pray for, pray this withdrawal stuff goes away soon, especially the inability to sleep, as the insomnia is pretty bad. I am also still battling a bit of a cold so pray that, that goes away soon and doesn’t find a food hold while my body is still trying to recover. Can’t wait to see you all again maybe a week or so and i’ll be ready. To all my Lakeside Orangevale family i hope to join you soon, maybe even play a song or two and worship with you. See ya.

A Poetic Interlude – Kate Asche

Right around the time Stephen first started experiencing symptoms, another friend of ours had a cancer scare of his own.  He found a growth on his knee.  Being Charlie, of course it had to be something completely atypical, with something like 10 other cases in the entire US.  It’s something called a Melalumpasnuffleupagus…or something like that.

Anyway, I told you all that so I could tell you this.  His wife Kate, our resident Poet Laureate, graciously gave us a few poems that she has written. Inspired by Stephen and Rose and written by someone who has had a taste of the uncertainty they are going through.

Rosemary at the Glass

1.

I imagine her there

all the rooms instrument-humming

it’s morning

he’s awake in the airlock

rubbing his eyes and face

talk

talking into the glass

it jumbles their words

2.

I imagine her there

all the rooms are hospital white

it’s night

he sleeps still through the chemical drip

she watches him sleep

nosetip

fingertips against the glass window

between their one flesh

Adventures of Bubble-Boy – Day 20

Directly from Stephen’s Blog: Silhouette of You

Monday, February 23, 2009
The Adventures of Bubble Boy (day 20)

The last nine days has felt like hell. The last time i wrote my counts were just on the fall. By day 13 my immune system was completely zero. There is a number for this called anc or absolute neutrophil count. Mine anc on day 13 was zero which meant i was now as susceptible as ever to disease or sickness. So i just laid there. My mouth had been completely destroyed by this point and become a huge source of pain. I was like having the worst part of a flu except extended over a week long duration. The last couple days have been a little different. as my counts came back certain things have gotten better. my mouth seems to be returning and i have been ale to actually eat the last 2 days. on weird thing is the shakiness i am having. I believe i am having withdrawals from the morphine they had me on for a couple weeks straight. i believe this is what is causing the shakiness and on edge feeling i have because having come off diluadid before, a similar drug, the feeling are the same. Hopefully soon though i will be out of here. they are supposed to be pulling the line out of my chest this afternoon. they may have to add a smaller catheter in my arm for a few days so i can still continue getting some iv antibiotics which are much stronger than the pill form. apparently they will send nurses to the house each day to give the iv and and check up on me. this last iv is a very strong antibiotic i have been on the whole time that should hold of anything still trying to fight inside. the doctors think that the chest line i have in might actually be causing much of the leftover infection. Once that is removed hopefully my body can finally try heal up completely. hopefully this will all take place today and i will either go home tonight or tomorrow. not sure if i can do this whole thing again for a analogous transplant. I am praying that God has finally taken this burden and weight from me. i am very excited though to try to get healthy enough to go see MD Anderson. they are able to do traditional treatments too in case we want to do radiation or whatever. I struggled with God like Jacob in the desert asking for a blessing that i did not deserve. I love that story because jacob keeps fighting and even after being injured he stills holds on the man he wrestles. Jacob even says i will not let go until you bless me. at that the man asks his name. he says Jacob and the man says his name is Israel for he wrestled and overcame. Israel calls the place Peniel because he has seen God face to face. I have that struggle the past 3 weeks. arguing pleading with God that i am to tired to go on and need a blessing. i believe he has. dont know what that will hold but i want it to start today. i want to scream from the mountain tops that God has saved me. i want to sing day and night of the healing which is only in him. this is to be my lifes creed.

-

Adventures of Bubble-Boy – Day 11

Directly from Stephen’s Blog: Silhouette of You

Friday, February 13, 2009
The Adventures of Bubble Boy (day 11)

I can’t imagine committing a crime. Not that am thinking of doing so. Being locked into one room for 24 hours a day is just not right. The last couple of days and the next couple of days are the most crucial in the healing process. At this point my White blood cell count is literally at zero. That means as little contact as possible with the outside world and basically i have to just sit here. Not that i have the energy to do much else. It’s a very interesting test in the strength of your mind. I have come to some peace about a lot of it though. I’m just giving myself the goal of making to the next meal and then sleeping. I have prayed constantly that God get me through this just safe and unharmed. I realize i will have to suffer the pain and frustration that goes with the transplant no matter what, but I do know God has protected me so far, and i thank everyone for praying the same. I absolutely am floored by the generosity and thoughts and giving of complete strangers. I have no words to thank people for giving to our trip to Houston. Rosemary and I are convinced that obviously there is a reason why we should be preparing to go there. I have always felt that the way God speaks to me is by either opening or closing a door. The answer always seem to be pretty clear that way. I have no idea what Houston could hold. I could be cured and go on to work a normal life again. I could end up on the other side of the world. At this point i don’t care. I just know i am willing to go all out. No matter how big or small my life maybe. So thank you. I can’t imagine how to repay everyone but i will certainly try by how i live here forward.

-

Adventures of Bubble-Boy – Day 9

Directly from Stephen’s Blog: Silhouette of You

Wednesday, February 11, 2009
the Adventures of Bubble Boy (day 9)

Wow nine days. Now really begins the waiting game. For the next week i just have to sit here while my blood counts and body fall apart and try to start over. One of the nurses told me it’s like another birthday. The way this transplant works is as my old defenses die off and the new stem cells begin to grow, my body will try to recognize the cancer and actually fight back. I am exhausted. I am not really sure what i want to say here. My brain is finally coming back into focus but i also feel as scattered as ever. No one really sleeps in a hospital but i particularly have not slept since i have been here. I am wrestling with God every second of the day. I have always felt a purpose in my life that seemed so great, a calling that i could never fully explain. I have been in church my whole life and now feel like somehow i was never there. I remember being filled with the Holy Spirit for the first time and speaking in tongues freshman year and saying to God whatever you want is what i want. I feel like though i’ve spent my whole spiritual life knowing the book smarts but never knowing God. In the past few months i’ve figured this is all part of the plan i guess. Just follow the steps. For the first time I am beginning to realize if i ever want to do something for God i need to know Him. Not the basics of theology or how to play church. I need to know Christ. The passion i have to do something great must be a greater passion to know God. It’s a rebirth. Just as the nurse had mentioned I want to start over. Amazingly I can. I am frustrated but focused. I realize this post is mostly just rambling but I just felt i needed people to know that i am trying to move forward. I realize there is nothing i can do to earn God’s favor or mercy and for the first time it makes me hopeful. God is doing something so amazing with all you people who are helping out and offering to not only get through this stage but on to Texas. I have no clue what that means or why it seems to be happening so easily but as i wake this morning i am confident am i finally standing in the right direction.

-

Adventures of Bubble-Boy – Day 3-4

Directly from Stephen’s Blog: Silhouette of You

Friday, February 06, 2009
The Adventures of Bubble Boy (day 3-4)

Just laying here today. Last two days of treatment haven’t gone too bad. I am getting enough medication to keep the nausea and sickness away. I can definitely feel the fatigue coming on though. Sort of just piles up day by day. I am currently getting two types of chemo twice a day. This is the third day with the 6th treatment tonight. Two more tomorrow and then another larger dose chemo that’s completely new again on sunday. Then the transplant. I can’t believe the response so far from everyone concerned. Certainly gives me hope to do something for everyone when this is done. Sorry I don’t have much to say, very tired, thanks for the thoughts and prayers. A little something i wrote yesterday

patience is a virtue which i learned then threw away
there’s calmness and composure which left the first frantic phone call i got
diligence and endurance which lasted til my strength finally left me
forbearance is what i was born with but even it won’t keep me moving forever
heart and perseverance is what people say of me
but even they can’t get inside this head
resignation is the road i am now headed on and serenity is what i seek
tolerance is another i have come to know fully
yielding is what i have left.
But to yield is to stop for me. At least it would seem to be too much.
yield can be succumbing, suffering, handing over to defeat
but it can also be admitting, relinquishing, or submitting what little i have left
i control nothing

I know not where to look for wisdom
Job 28:23-28
23 God understands the way to it ? and he alone knows where it dwells,
24 for he views the ends of the earth ? and sees everything under the heavens.
25 When he established the force of the wind ? and measured out the waters,
26 when he made a decree for the rain ? and a path for the thunderstorm,
27 then he looked at wisdom and appraised it; ? he confirmed it and tested it.
28 And he said to man, ? ‘The fear of the Lord—that is wisdom, ? and to shun evil is understanding.

covenenants aren’t meant to be broken but mine feels crushed
gladly i would sacrifice and walk through the blood
seems like i have but still ahead more

-

Adventures of Bubble-Boy – Day 1-2

Directly from Stephen’s Blog: Silhouette of You

Wednesday, February 04, 2009
The Adventures of Bubble Boy (day 1-2)

It’s my second day locked away. Really my first full day with last night being my first night in. Had my first dose of chemo yesterday. I will be receiving chemo everyday for the first 6 days and then get my stem cells transplanted on the night of the 6 or 7th day. (for those with a weak stomach you may not want to read all of this, i will continue again after the next parenthesis) Yesterday’s was supposed to be some of the worst. It was definitely not any fun. Made my head feel like i was having a power drill put through my temples, all while smelling it happen, and sucking on an aluminum can. Fortunately they gave me enough stuff not to puke, and to cover the pain they just kept shooting me up with morphine. Morphine is very interesting. It certainly works but it makes me feel very slow. I could think but could not say what was on the tip of my tongue. It doesn’t last long though so by the time the chemo was done the drugs were gone. (You can start reading again) Second day I have had one dose already. This is another lower dose chemo which i get again this afternoon and on and off for the next five days. Not bad so far, i am sure it will all start to pile up and make me sleepy but for now I am somewhat coherent. The plan for now for those who haven’t heard; i will have this transplant followed by radiation. Then we will look for a donor to do another stem cell transplant but with those stem cells and not my own, which is a stronger transplant but a riskier operation. Then we will probably follow that up by going to MD Anderson Cancer Center in Houston or another specialty cancer clinic to look at some diet and other new cutting edge treatments for cases like mine which have shown tough to beat. I wanted to say a quick thanks to everyone who is praying and offering help to us. There is to many to list so I am sorry i can’t say thanks to everyone individually. I did want to say thanks to a couple people and inform people of some amazing things going on. My friends nathan and andrew have been heading up getting a trust setup for me to help with the medical bills and the cost of going to some of these specialty centers which are quite costly. They have set up a trust at Wells Fargo called “the stephen shirley medical fund” you will need to know Rosemary Shirley is the account holder if you wish to give. This is amazing. I can’t ever say enough thank you’s or even make up for the concern and giving people have poured out. It’s amazes me the outpouring of even complete strangers to give and pray for someone hundreds and even thousands of miles away. I don’t know how i will ever repay any of you. I only hope that when i do go into remission I can hopefully go onto something big enough and worthwhile enough with my life to confirm the faith everyone has put in God and my life. Thank you a million times over, I will continue to update when i am feeling awake and not too disconnected to write. See ya

-

The Cancer

Many have expressed an interest in what exactly Stephen’s treatments have been. Steve’s mom, Marlene Shirley, has written up a detailed timeline as well as what the plans currently are as Stephen goes forward with his treatments.

The cancer is called Hodgkins Lymphoma and it strikes a little over 8000 people each year. You will hear people call it Hodgkins disease also but this includes other Non-Hodgkin Lymphomas. There are two types of Hodgkins and Stephen’s cancer is what is called “Classical Hodgkins Lymphoma”. Typically the cancer strikes 18 to 35 year olds, usually male and also people over 55. It is said to be one of the most curable cancers, though in Stephen’s case, because it was found late, it has proved resilient to treatment. It typically is found in the chest area first. The cancer can not be linked to anything environmental or genetic, though there is a possible link to the Epstein Barr virus, and it has been around a very long time. The first case of it was discovered in 1832 by physician Thomas Hodgkin.

Hodgkins is found in the lymphatic system. The lymphatic system is a system of nodes, passageways (vessels), lymph (a type of fluid) and other organs (like your spleen and tonsils), which run all over your body. This is your immune system that helps filter out toxins and other bad cells. Because of where it is located, Hodgkins can not be taken out by surgery since it just keeps moving from node to node through cells in these passageways. (I could put many other facts in here, but then your eyes might just gloss over from brain fade, if they aren’t already). This is some of what we know about Hodgkins, though there is much more to it. If you have a general interest in Hodgkins or any other cancer, several good sites to go to are The National Cancer Institute at www.cancer.gov , www.leukemia-lymphoma.org , a great cancer society that helps many people, and the American Cancer Society, www.cancer.org.

Stephen’s Cancer and Treatment

I’m going to try to give as brief a background of Stephen’s symptoms from the beginning as I can, but I hope that if you see yourself in these symptoms you will go see a doctor if you have concerns. You just never know. Just a quick note… before Stephen was diagnosed he was in excellent physical condition, playing baseball with his good friend Bobby, softball, golfing on a regular basis and also going to the gym off and on.

Back in the summer of 2006, Steve noticed some heaviness in his chest but didn’t really think much about it. In Dec of 2006, one Saturday morning, he woke up unable to breath and Rosemary called 911 and got him to the hospital. They did an xray but really didn’t find anything except a possible shadow on the xray. He was told to follow up with his doctor.

He followed up with his doctor the first part of January and basically had to convince his doctor to do a blood screen. His doctor said he didn’t find anything on the xray either. By this time he was starting to feel a bit tired but didn’t know why. His blood test came back that he was anemic. The doctor didn’t do anything (though it isn’t normal for a 25 year old to be anemic), and told him to come back in 2 months. This is about the time his cough started but it was off and on but never would go away completely.
Stephen went back to the doctor in March and another blood screen was done. This too came back that he had anemia but the doctor once again didn’t do anything. At this time it seemed that Stephen had a cold, so the doctor gave him nose spray but the cough and other symptoms persisted. Soon other symptoms would begin, like the night sweats and off and on fever.

Near the beginning of April, we all urged Stephen to find another doctor who would listen to him and he found a great doctor. She immediately began ordering other tests. By May, a CAT Scan had been done that showed that there was something and they needed to keep testing. In the mean time, his new doctor was conferring with an oncologist about his tests and this doctor would ultimately be Stephen’s general oncologist.

Dr. Quadro, Stephen’s oncologist, pushed through quickly a new type of diagnostic procedure at the time called a PetScan. This was done and a mass was definitely found. In the mean time, Stephen just kept getting sicker and sicker specifically from the B symptoms (which I describe below). He had a biopsy in June which confirmed the diagnosis of Hodgkins Lymphoma. (Even Months before the biopsy, Stephen already suspected that this was what was wrong.) He went into immediate treatment the next week, because he was so sick.

When Steve was diagnosed, his cancer was diagnosed stage 3B bulky disease. There are 4 stages to cancer, 1 to 4, one being the best case scenario and four the worst. Doctors also use a coding system called A or B. “A” means there are no other symptoms along with the cancer, “B” means there are other symptoms. The B symptoms that Stephen had with his cancer were night sweats, fever off and on, continual cough, weight loss, general tiredness and at this point great pain in his chest from coughing so much. He had lost about 35 pounds by the time he was diagnosed. “B” symptoms make the curability more difficult. Along with this, doctors also rate on the size of the tumor area so it was determined bulky. This all might seem a little much but it is the basis for the continuing treatment that he’s had to have. Because the lymphoma was so large, Stephen’s first treatment was very aggressive with 100% of what the protocol was.

Stephen’s Treatment

Stephen was given, initially 6 rounds (12 treatments) of a drug regiment called ABVD, which is the typical protocol for Hodgkins. He started this in July 2007. Progress was made but as things went along, it looked like the chemo wasn’t getting quite all of the cancer, so his doctor added 2 more rounds. This treatment was finished in February of 2008. At this point everything was looking well and we prayed for the best. After treatment, it was decided to wait a month and do another PetScan because the previous PetScan still showed some possible cancer, though his doctor had hoped it was only scar tissue. In March, the PetScan showed that the cancer was coming back. We knew that this was a possibility but it was still concerning and disappointing. At this point the next step was the Stem-Cell Transplant.

Stephen and Rosemary met with the UCDavis doctor for the transplant. It was then told to Stephen and Rosemary that he had to do a “salvage” chemo treatment first before the stem-cell, which he had not known about. The treatment is called ICE. He had two of the chemo treatments in the hospital, 3 weeks apart, one in May and one the first part of June. Thankfully, Stephen and Rosemary were able to attend Stephen’s sister’s wedding at the end of June. After the ICE treatment, at the beginning of July, Stephen had another PetScan. It showed that the cancer was still growing, the ICE treatment had not worked, so UCDavis said they would not do the transplant.

It was decided between all the doctors that they would go back and re-biopsy his cancer and also do a bone marrow biopsy, because they were concerned that this might be another form of cancer after initial treatment. They biopsied as close to the original growth as possible. This reconfirmed the diagnosis of Hodgkins but this time they also found an anti-body that is normally found in non-hodgkins patients. This was a new twist. Because of the new finding he was given a different round of treatment with a different chemo and a new added drug, “Rituxan”. He did this treatment a number of times and it seemed to really do the trick. His scan looked great.

The UCDavis doctors now gave the go ahead to do the transplant and Stephen began preparing to go into the hospital in December. In November, Stephen’s stem-cells were taken out over a 3 day period and everything looked great. Another PetScan was performed to verify the size of the tumor area before the transplant but the cancer had come back again too large. UCDavis once again said they would not do the transplant and sent him, once more to do another round of salvage chemo. This happened in early and late December. This would be the last salvage-type chemo they could do.

We are now in 2009. Stephen had a PetScan on Jan 9 and it looked great. It was as clear as any of us had ever seen and we were celebrating. The transplant was back on. Just a week after this, Stephen got sick with what we all thought was a bad cold. After having a fever for a few days, the doctor put him in the hospital and they ran a battery of tests to check for just about anything and everything. He was released after 4 days and went home with a fever and no answers. It was unfortunately now thought that his symptoms were the cancer coming back. His doctor pushed through another PetScan just 20 days after the last one. This PetScan looked almost as bad as the very first one. It was frustrating and confusing that the cancer had grown back so fast in just 20 days. At this point his doctor and the doctors at UCDavis were unsure what they would do or recommend.

After several days of many phone calls to many physicians around the country, his UCDavis doctor, Dr. Richman and Stephen’s oncologist recommended the stem-cell transplant even though the cancer had grown back so quickly. Through much prayer and deliberation Stephen and Rosemary said he would do it. Because of the aggressiveness of his cancer, the doctors do not believe that this will be the last transplant but it is a stop-gap measure to move on. Stephen is now in the hospital having gone through the stem-cell transplant but still fighting to live. Having battled a fever and infection, Stephen is now on the mend. It will be a few more days before his own system fully takes over. It is difficult for him but he/we know that this is his best chance for survival at this point.

You might ask, what happens after this? Many of you are giving to help with MDAnderson (and I will get there) but there is more to come before that. Once Stephen gets through the next week or two, and once he is strong enough, he will begin radiation. We don’t know yet how long this will take. It is possible that Stephen will need a donor transplant but that really won’t be known until after the radiation. A search for a suitable donor is beginning now. I know many of you have expressed an interest in helping with a donor match. Please let us know if you are interested. We should also have some info about it up on the site soon.

Stephen and Rosemary are planning on going to MDAnderson for further medical help and have spoken with them. Unfortunately, MDAnderson is out of network for their health care and there is an upfront cost of $41,500 to walk in the door. It might be possible that his insurance will help with some costs after the fact but we really don’t know at this point.
It really has been amazing that during most of this process, up until recently, Stephen has been able to lead worship at Lakeside Orangevale Church. His chemo treatments always seemed to land at just the right times. I know that this has truly been a blessing to him and Rosemary.

This may seem like a long story but these are really just some of the highlights of the past 2 years. I have tried to keep this as short as possible. It has been and will always be our desire to see Stephen well, so he and Rosemary continue fighting on. As things progress I will do my best to keep you updated. For now, the whole Shirley and Kariya family thank you so much for your encouragement, prayers and support. We really can’t do this without all of you. You are a wonderful gift and blessing to us from God. We have seen him move in the large and small things throughout this time and we could tell you many stories of His provisions, which include you, but then this might turn into a novel. Many blessings to all of you

- Mom (Marlene Shirley)

First Impressions – A Stevo Story

He had to be a freshman.  I was a disgruntled “third year” student at Sierra College, having missed my opportunity to transfer to UCD.  It was fall 2000,  and as I awaited my 8am poly sci class to commence, I observed a smallish guy with a big grin sitting on the floor in front of the door, all too eager to begin his academic day.  Once inside the classroom, he sat next to me. We were two of only 10 in this International Relations class.  Our professor, we lovingly labeled, “Satan,” began his ranting and ravings about Vietnam and terrorism.  The first words Stephen spoke to me: “Could I borrow a pencil?”  I thought it was weird…I stopped carrying pencils in high school, and thought I only had pens on me.  I checked, and found one pencil and reluctantly gave it to him.  For the next week, everyday he asked me for a pencil. I gave him my only pencil the first day, and he never returned it to me, which I reminded him of.  So I began giving him my pens.  I was beginning to get a little perturbed, since I was now down to only one or two pens to use myself.  I was about to offer to buy him a Costco pack of pencils.  After the first two weeks of class, Satan cancelled one day, so I rushed out of there unsure of what I was going to do until my next class…not enough time to go home and sleep, but too much time to sit around waiting.  The little guy said something behind me. I turned around to acknowledge him.  It was then that I noticed he had the most gorgeous eyes I had ever seen.  He bought me coffee and he had tea, and we talked for the next hour in the cafeteria. I learned that he was a musician, which scored a lot of points with me.  One of Stephen’s best friends, Charlie was kind enough to put a label on how I felt for Stephen at the time.  Without divulging it, as it may be offensive to sensitive readers, it alluded to his small stature, and yet “satisfactory” appearance.  His appearance was more then satisfactory, obviously, he had the most expressive eyes, and beautiful smile I’d ever seen.  

Our first date was very memorable. He cooked me chicken fetaccini, and brought me to the park by the river under Hazel Ave.  Stephen was well prepared, with the exception of a bottle opener. For he had even thought to bring a bottle of sparkling cider.  Unfortunately for him, it was not the “twist off” kind.  I was horrified as I watched him bare hand it, but he eventually succeeded!  He must really like me, I thought.   Then the bees came.  They came out of nowhere. They swarmed all over our romantic dinner, and we had to move twice, and finally give up altogether, because like most women, I’m deathly afraid of bees.  He took me home and kneeled down on one knee and kissed my hand, adding “See you soon princess.”  That’s when I knew he was a keeper.  It was not until later that he admitted he thought he’d never see me again after the bee incident.  

It seems like ages ago as I reminisce about those first memories of “us.”  They are and will always be some of my best memories.  Oh, and did I mention he has the voice of an angel??

Love you Stephen,

- Rosemary

A Stephen Story – The Murphy’s

Stephen and Shawna in Kindergarten

Hey everyone.  I got this quick Stephen story from Bonnie Murphy through Kate Asche.

Kate forwarded this to me because she, “thought this was adorable”.

She wasn’t wrong.

HI Kate:
Thanks for sending this along. Yes, please keep me posted on the events. I
read Stephen’s blog with a heavy heart. Maybe you remember his family
lived in our neighborhood. Reading his blog, i can only picture him as a
little boy riding his bike with busy energy. He played with Shawna
sometimes and I remember he was about 6 or 7 and he gave Shawna $2. This
must have been all the money in the world to them back then!

Thanks Kate,
Bonnie (and Fran and Shawna and Michael) Murphy

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