It’s been a while…

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 14^th, 2009

Location: Beach Hut Deli Midtown

Street: 2406 J Street (map)

City: Sacramento

Hope to see you there!

Bone Marrow Donor Drive Information

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.
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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    95819

Drive 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    95841

Drive Date:Mar 3 and 4th, 2009
Drive Time:9:00AM – 3:00PM
http://web.arc.losrios.edu/~health/Events.html

Thanks!

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)

Stephen’s Blog

Here is the link to his personal blog, Silhouette of You, where you can read and comment about Stephen’s experiences and thoughts related to his treatment.