Steven and Sean on the Polar Bear Cam
Steven and Sean on the Polar Bear Cam

Sunday, September 07, 2003

Introducing Ourselves

Who the heck are these people anyway?

The photo above, that's us at Christmas in 2003.

Second from the left, that's my husband Doug, an enterprise software architect geek, for you other geeks out there, he programs in Java and he currently works (telecommutes) for a company in Chicago, CCC Information Systems.

At Doug's right hand, that's me, Kathy or Kathleen (Doug calls me Kathy, my parents call me Kathleen), an ex-chemist-turned-software-web-development geek. I've worked for many companies, but since the kids were born, I've worked part-time, mostly from home.

Doug and I met while we were in school at University of California, Irvine. Doug dropped out of school after two years to start his own software company with another UCI graduate and I graduated with a degree in chemistry and started working as a chemist. It was after that we started dating.

Under Doug's influence, I decided to go back to school and get another degree in computer science at University of California, San Diego. Doug moved to San Diego to be close by. I graduated from UCSD and we got married in 1988 and settled in San Diego.

On September 6, 1994, after several miscarriages, we welcomed our first son Steven into the world. He's the bald kid on the left in the photo.

Two years and nine months later, on June 30, 1997, Sean, the kid on the right, 6 years old in the photo, came into our lives. Steven and Sean are best friends most of the time, in between episodes of wanting to kill each other.

While I was 6 months pregnant with Steven in 1994, Doug's sister Deb's just-turned-three year old daughter was diagnosed with an inoperable and highly aggressive brain tumor on her brainstem. Kyra fought her tumor bravely, with great courage and grace, but the tumor proved to be too strong to stop.

Kyra died on February 15, 1996, the day after Valentine's Day, 19 months after her diagnosis, at home in Santa Cruz surrounded by her family and friends. She was 4 1/2 years old and Steven was 15 months old.

Steven was born with a multitude of problems from birth, a cleft palate, limb length discrepancies, and a bunch of other things that he either outgrew or that didn't seem to amount to much in the big picture.

At the end of the summer in 2003, 3 weeks before school started, Steven started complaining of headaches and nausea in the afternoon or early evening.

He would have little "episodes" that would last an hour or two, then he'd feel better. Not every day in the beginning, maybe every 2 or 3 days. His second episode, he felt clammy to the touch, covered with sweat just like he had a fever, but his temperature was absolutely normal.

I took him to the doctor, who said it was allergies most likely. The episodes kept occurring and his pediatrician ordered a complete blood workup, which showed nothing.

After the third episode I had a sick feeling in my gut. After Kyra's diagnosis, I had volunteered my time and talents to a brain tumor support group and through that group I had gotten to know lots of other brain tumor patients and doctors. I used to do the Brain Tumor Awareness Week website. I knew the drill, I knew the symptoms.

Still, it didn't seem possible. We celebrated Steven's ninth birthday on Labor Day weekend 2003, me with butterflies in my stomach the entire time. He was OK that day but the next day he threw up while we were at the store trying to refill a prescription for his "allergies".

I called my pediatrician and he said wait for one more episode, then we'll order further tests. It was Saturday night. I took Steven to church. In the middle of church, he went to the bathroom because he was feeling nauseous.

It was my "aha" moment. I knew then, with no MRI or CT scan to tell me, that he had a brain tumor. I felt sick. I'd known it before, after his third episode, but at that point I was still able to rationalize it. After all, what are the chances that lightning strikes twice?

Steven was diagnosed on September 9, 2003, 3 days after his ninth birthday, with a supratentorial primitive neuroectodermal tumor, or PNET, a highly malignant brain tumor similar to medulloblastoma, that seeds itself through the cerebrospinal fluid. It is the same cancer as Ewing's sarcoma and can metastasize to the bones.

Steven had surgery in San Diego at Children's Hospital, the surgery was deemed a complete removal of his tumor. His surgery was on a Wednesday morning, we were home on Friday evening.

Even though his tumor was removed, if any stray cells remain they can start growing anywhere in his brain, spinal column, or bones. Doug and I spent two solid weeks, probably 20 hours a day, researching available treatments, sending his records out for third and fourth opinions, and reading the grim survival statistics and side effects of treatment.

We decided on a treatment protocol at St. Jude, SJMB03, which offered a lowered dose of radiation to Steven's developing brain while maintaining favorable survival statistics.

Steven and I relocated to Memphis for the duration of Steven's treatment. Steven received radiation to his whole brain and spine during October and November of 2003. We lived at Ronald McDonald House during Steven's radiation treatment.

We returned home for Thanksgiving and Christmas, then the four of us returned to Memphis the day after Christmas to begin four cycles of high-dose chemotherapy with stem cell replacement. From January to May we lived at Target House in Memphis.

Steven finished his treatment officially in May 2004, now we return to Memphis every three months for followup visits, to monitor the side effects of treatment and to look for signs of recurrence.

This is our story, stay tuned ...

- Kathleen

28 Comments:

Anonymous Anonymous said...

I found your site through Stanton's site and wanted to let you know how much it means to us that you took time to sign his guestbook with everything that you are going through yourself. My family will add your family to our list of prayers.
Erin Maness, Friend of Stanton's
Minden, LA

February 11, 2005 11:28 AM  
Blogger amy said...

feb. 17, 2005
i found your site thru FLIRT IN A SKIRT. thanks for sharing your story. it's incredible, yet sad, yet powerful. you are definately worth keeping in my thoughts and well wishes. peace, amy petrik, yankton, south dakota

February 17, 2005 11:56 AM  
Anonymous Beth said...

I can only hope that Steven continues to improve. From one bt survivor to another--hang in there! I had tears streaming down my face as I read about your incredible journey.
I am planning a fundraiser for St. Jude's on Sunday April 3rd, 2005 in lieu of a birthday celebration. I am asking for donations to St. Jude instead of birthday gifts. It's not a milestone birthday--but as you know, each year surviving a brain tumor becomes a milestone. Tomorrow I will be an 18 month survivor of a small fully resected and agreessively treated GBM.

I thought your list of thank you's was so touching. Keep up the good work.

Steven--I hope that you live a long and prosperous life.

I am so glad that you found such love, compassion and hope at St. Judes. I will be sure to share your story with my guests. Maybe it will make them dig into their pockets a little deeper and it will raise a little bit more money for the kids at St. Jude's.

March 13, 2005 10:28 AM  
Blogger Leslie said...

I found you through An Audience of One blog.
I love the music. It made me cry.
My financial worries because of my husband's lay-off are small potatoes now. If we weren't so broke, I would send you every single penny I had in the bank. I really would. Children are so precious!
I have a 3 year old son and a 9 month old daughter, and I don't know what I would do if something happened to them. You are all so very strong! I will keep you in my thoughts and prayers. You have taught me what optimism looks like, and I thank you for that.
Tell your son to keep smiling. He has a beautiful smile, and his smile outshines all his troubles. Hug each other and hug often.
Leslie "Red" Duke, Tulsa, Oklahoma

April 20, 2005 9:32 AM  
Anonymous Susan said...

Hi Kathy and Steven,

Your site is just incredible! I've enjoyed reading your journals and the pictures were great!! My son is a patient at St.Jude also. He is a 19 year old with a JPA. He just completed his radiation treatments. I will pray for your son Steven, he is precious!! God bless you and lead on your journey!
Susan

April 29, 2005 3:47 PM  
Anonymous Anonymous said...

You don't deserve such unfairness and I an in awe of your strength. Your beautiful children and blessed to have you and you are to have them.

My prayer and best wishes for healing and fun are sent to you.
Lynn

May 14, 2005 1:19 PM  
Anonymous Keri Hann said...

I found your site when I was reading another and since you are from San Diego I wanted to see if I have met you befor. I read your story, I wish Doctors would listen to us Mom's that know are children. You can check in on my daughter katie Rose if you want. Her web address is www.caringbridge.org/ca/katierose
Lakeside
Keri Hann

August 06, 2005 9:32 PM  
Anonymous Nicole said...

I am sorry to hear of your sad journey, but am glad to hear that he found treatments. I do hope he continues to do well.. my prayers are with you and your family.

August 08, 2005 9:12 AM  
Anonymous Anonymous said...

I found your site just looking for an image of an fMRI machine. I got wrapped up in reading on the website. I just recently lost my mother to metastatic breast cancer - it was highly aggressive and moved into her brain, then she had a seizure and had to be kept in a coma - and I am an epileptic. I know what it's like to have brain issues. Good luck with all the treatments and take it easy!

October 31, 2005 11:28 AM  
Anonymous Matt Dougherty said...

Steven...My name is Matt and I am from Bradford, Pennsylvania. I read your story of the battles you have had in life. I work with children as a living for my job and am a member of a couple of different charities one of which I am heavily active in, and that is Big Brothers Big Sisters of America. It has always touched me deeply to be a part of these childrens lives. I am writing this letter to tell you to stay strong and you will overcome all of these things. I have faith in you and having battles of my own that i have been living with all my life i just want to say never lose hope. The more positive that you stay the better you will get. It even helps by putting a smile on your face and telling yourself whats there to be upset about. I am strong. I have beat this thing so far and i am going to continue to beat it even more. I will be completely healed one day and I can do this with God's help. Never be afraid to pray. Our lord Jesus was know and is still known as the most powerful healer in this world and all you have to do is continue to pray to him and have faith in him and he will help you throughout your tough times...I don't know what I would do without him..I am so glad to have him here in my life because he helps me get through each day. I know he will do this for you too...You will always be in my prayers...
Steven if you would be happy to I would love to be penpals with you and we can keep in touch with each other and work as a team. Nothing warms my heart as much as being there for someone who could use that extra friend..Remember you can never have to many friends... My email is bradfordbaseballer11@yahoo.com and I would love to hear from you on how you are doing and i will continue to keep in contact with you..I know in my life as of now i need someone to inspire me in why i am here and as of this moment i can think of nobody else but u for this part. Also I would like to be an inspiration to you also. Email me and let me know what you think. I believe that if there is a healing friendship out there that this is it..I cannot wait to hear from you... May God Bless you and your family and hopefully i will hear from you soon..Remember each day here on earth is a gift from God and there is never too many times to spread thanks to him for this...Take Care...

Your New Friend:
Matt Dougherty
Bradford, PA

November 04, 2005 9:09 PM  
Blogger carol said...

Hello, I came here from " funky cowboys blog " what a heart wrenching story, I am so sorry for the undeserving struggle your family must go thru, god bless you all. HUGS, CAROL

December 08, 2005 9:11 AM  
Anonymous Lisa Guilder said...

Hi, We found your site while looking at others from our support group. Our 3 year old daughter, Poppy, also has a brain tumour, we have met many children through our journey who also have PNET or medullablastoma. We just wanted to pass on our love & prayers. We feel that all children fighting this horrible disease have a special spirit, Poppy is one of the bravest, happiest, brightest, smiliest people we have ever met!!! Steven looks like he has this special spirit too!
With love Lisa, Brian & Poppy Guilder, UK
www.poppyfieldsappeal.co.uk

February 19, 2006 12:28 AM  
Anonymous Chris said...

Hi Guys, I found your web page through a friends site, Genna. We are in Temecula-practically neighbors! My daughter Carly has brain tumors, optic gliomas, and NF1 like Genna. Carly has been on chemo for 21 months now, weekly, at Childrens of San Diego. I pray that your treatment is going well. Chris-Mom to Carly age 5
www.caringbridge.org/ca/carlymckay

February 24, 2006 11:34 PM  
Anonymous Anonymous said...

Hi, Saw this posting on PUBMED.COM and thought it might be useful to you.

1: Cancer Lett. 2006 Jan 18;231(2):262-9. Related Articles, Links


Anticancer effects of fenretinide in human medulloblastoma.

Damodar Reddy C, Guttapalli A, Adamson PC, Vemuri MC, O'Rourke D, Sutton LN, Phillips PC.

Division of Neuro-Oncology, The Children's Hospital of Philadelphia, Philadelphia, PA 19104, USA. reddyd@email.chop.edu

N-(4-hydroxyphenyl) retinamide (4-HPR, fenretinide) a synthetic retinoid is in clinical trials for the treatment of several malignancies. However, its biological effects and therapeutic value in childhood brain tumor medulloblastoma (MB) has not been investigated. In this study, we report for the first time that fenretinide (2.5-10 microM) induces apoptotic cell death in human MB cells. We observed significant inhibition of cell survival in four MB cell lines (D425MED, D458MED, D283MED and D341MED) as determined by MTT assays. These results were further supported by inhibition of anchorage-independent colony formation in soft agar. Fenretinide-induced decrease in cell viability was in part due to activation of caspase-3 dependent cell death, which was further supported by the cleavage of poly(ADP-ribose) polymerase-1 (PARP-1), a caspase-3 substrate. Cell death was partially prevented by the antioxidant, l-ascorbic acid suggesting that free radical intermediates might be involved in fenretinide effects. These results suggest that pharmacologically achievable concentrations of fenretinide are effective in killing MB cells and thus show its therapeutic potential to treat human MB.

PMID: 16399227 [PubMed - indexed for MEDLINE]

--------------------------------------------------------------------------------

May 31, 2006 9:07 AM  
Anonymous Anonymous said...

Thank-you for your statement of faith at a moment of remembering my sweet sister! Beautiful thoughts and prayers sent your way tonight.

July 31, 2006 9:36 PM  
Blogger Margo said...

I found your site and wanted to introduce myself and my son to you.

Last year, on August 5, 2005, my then 7 year old son was diagnosed with a pineoblastoma brain tumor (also a PNET). It sounds like he had a similar treatment to your Steven -- 5 rounds of chemo followed by an even tougher 6th cycle and a stem cell transplant. Following chemo, he had 6 weeks of radiation (20 days of brain and spine and 10 days to the brain). On July 7, 2006, Paul finished his treatments. He is NED, but now we start the MRIs every 3 months.

Thank you so much for sharing Steven's story. I find it so helpful to read survivor stories. It sounds like we have very similar situations. I will definitely visit your website again -- thanks again for the uplifting update!
www.caringbirdge.org/visit/paulsarkisian

Margo

August 07, 2006 8:29 PM  
Anonymous Jennifer Miller, Michigan said...

I just wanted to say God bless you and your family.

September 08, 2006 2:10 PM  
Blogger Tim Perkins said...

Kathy - I saw Steven at the last Fall Ball baseball clinic two weeks ago in Del Mar... Big grin on his face and looking pretty excited to be out there! Can't wait to hear how his first game went. We love your blog. Keep up the good work.

September 26, 2006 10:58 PM  
Anonymous Carmela said...

Christ's blessings to your family! I was searching for a picture of a portacath when I stumbled upon Steven's website. Thank you for being so generous with your family's journey. Cancer has touched my family twice and it was not easy. I uphold your love for each other and I will keep all of you, esp. Steven, in my prayers.

September 28, 2006 8:23 PM  
Anonymous Anonymous said...

I was searching google images for polar bear pictures to put on my refrigrator. A simple task. I clicked on a picture and up popped your story. For the last hour I have been reading your story and have had a very difficult time keeping myself composed. You have touched me so deeply with your strength, your hope, your courage and your FAITH. I have 3 sons, all pretty much grown, but loved dearly and deeply. As of today I will not take having them for granted. I will give thanks and appreciate each word and moment. I pray that God will bless you, keep you and carry you through all your doubting times and exhausted times, through your tearful times and give you strength in your prayerful times. Much love to you all.
Kati McLean
Tennessee

December 28, 2006 9:51 AM  
Blogger carolyn said...

Carolyn says:
My little girl Melissa was diagnosed with Medulloblastoma on Oct.03 2006. As I write this from ROnald McDonald house she is the hospital. Today is day 0 of the first round of Chemo. She is on the St. Jude's protocol also. She finished her radiation Dec.14. I am writing from Toronto,On. Our story is on the caringbridge site. If you are interested it is caringbridge.org then you go to visitor sign in-type in lillycarolyn then visit. She is doing well, but she is one sick little girl right now. I am happy your little boy is doing well.--Carolyn

January 30, 2007 7:26 PM  
Anonymous Anonymous said...

Kathy, Hi its Carolyn Lilly. How is Steven doing? I just realized that Steven and Melissa started and ended treatment in the same months, we started in Oct.,chemo in January, due to end in May. Could you email me your email address, I have a question for you that I can not find the answer to. It is regarding the Collin Law. Thanks, Carolyn

March 30, 2007 7:22 AM  
Anonymous Mark Guillot said...

We too are SJMB03 (medulloblastoma) warriors of St. Jude and our 12 year old son Matthew is recovering nicely. Since you are way ahead of us (dx 6/15/06 tmt end 2/7/07) it is so great to hear/read of your experiences. God Bless you all and prayers for Stevens' continued recovery.
www.caringbridge.org
visit
matthewguillot4

June 19, 2007 7:48 AM  
Anonymous Anonymous said...

I just found your site today after a friend told about our teacher (Ellen) passing away. She taught me drama in 1988 or 1989. She was a great teacher and still remember her laugh nearly 20 years later. I am sad yet uplifted. My brother-in-law passed away in 2003 from a brain tumour. I still miss him. He was only 47. I feel like I want to visit again. Stay well Steven.

September 04, 2007 7:08 PM  
Anonymous Anonymous said...

I came to your site through David Welch's. I have had the unfortunate event of relapsing twice in my journey, and the only common factor is that I always had a PNET (At one time, I had a PNET and a GBM, as well as tumors elsewhere, up to 8 at a time). But alas, I'm still alive. :-)

My heart aches for the journey you and your family are on, but just know, that at St. Jude's, anything is possible. They're hearts are so big, and they work so hard. I'm so glad to see that Steven is doing well. I pray that he continues to do better and better. happy valentine's day. I hope it was filled with lots of love.

February 14, 2008 5:47 PM  
Anonymous Christine said...

God Bless you and thank you for contacting us on www.catiesstory.com. You wrote to Catie about the bone marrow transplant and 7 year old Catie agrees with you completely. She'd rather not go through that again. Round 4 is scheduled for January 09 at St. Jude's and the transplant will be bone marrow. Pray that all goes better than round one. These kids are brave, these kids are strong, God bless these kids. Christine O'Brien

November 15, 2008 7:45 PM  
Blogger Tonya said...

Hi, Kathy, it's me again.. I read your son's story... wow! Ours with Brent is somewhat similar, in that he was the child for which I prayed. It seemed like we tried FOREVER "to get pregnant". FINALLY, we did and the rest is history. (We had Zach, our middle child two years later.. then Gabe three years after that with one miscarriage in-between)

Susan told me that she thought you'd signed Brent's guestbook before. I USED to be good about following up on comments. Of course Brent's survival rates were TERRIBLY grim in the beginning and we were given NO hope after relapse. I've always been a bit ditzy, but when Brent got sick it seemed that my brain turned to MUD!(I once had a friend tell me that they bet it took me two hours to watch, "60 minutes"... Ha!!)

If you did visit and I never followed up, I'm TERRIBLY sorry! The comments and words of encouragement have meant the world to us and I NEVER want to come across as if they don't.

My prayers will be with your family - for AMAZING scans ALWAYS!

It's been a pleasure to hang out with you this morning. =-)

April 02, 2009 5:15 AM  
Blogger Lise at Amala Yoga said...

I randomly encountered your site while looking for photos of sea birds and whales...What shines through in your words and pictures is the strong, deep love you have as a family, that surely sustains you. I have one son who is healthy - and I give thanks for that everyday! As a mom I've constantly felt over the years that we always struggle with the fear that we cannot protect our beloved children from everything, and I've prayed for all the parents and children who must contfront this as a grim reality - in whatever form it takes. You are so inspired to support your son's connection to the natural world - it is the source of our inner health - and to work so tirelessly and with such grace and love for his wellness. May you always find the support and blessings you need. I add my prayers for your family.

Lise

July 30, 2009 7:52 AM  

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