Sunday, July 20, 2003 8:52 PM CDT

One year ago today Seth had a seizure. It was just a little over a month since he was diagnosed and started chemo. He had hardly eaten anything in several days. His weight was down in the low 20s. That morning he woke up alittle bit more like him. He wanted to play. By later afternoon he had eaten almost 2 peanutbutter and jelly sandwiches. But it was too little too late. The chemo had taken a toll on his little body. His nutrient counts were so low he had a seizure. We rushed him to the hospital where he spent a few days in PICU then the O2 floor. I have included a picture in the photo album section. I know it is a bit hard to look at but it is one of the many reasons we still fight this disease.

Here are the ways we are fighting this disease.

On September 19, in downtown West Palm Beach we will be at the annual “Light the Night” walking for the Leukemia/Lymphoma Society. Everyone who participates in Light the Night carries illuminated balloons to celebrate and commemorate lives touched by cancer. Funds raised support the Society’s mission to cure leukemia, lymphoma and other blood-related cancers and to improve the life of patients and their families. Anyone can take part in this wonderful event. It is a very casual walk with no fitness requirements.

There will be a Kick-Off Party for the West Palm Beach Light the Night Walk on Wednesday, July 30th at The Palm Beach Kennel Club (located on the corner of Belvedere & Congress) from 6:30 p.m. through 8:30 p.m. There will be a $5.00 charge at the door for all non-registered guests. To register, contact Alison at the Leukemia & Lymphoma Society at (561) 775.9954 before July 28th.

The Light the Night Event in West Palm Beach will begin at 6 PM on Friday, September 19. Everything gets started on the Library Grounds in Downtown and the walk is up and down Flagler. If you don’t live near West Palm Beach, there are other Light the Night Walks going on all over the country. Contact your local Chapter of the Leukemia & Lymphoma Society for details.

The walk up and down Flagler will, literally, be a walk in the park compared to the next fund-raising event. Ruthie and I are going to participating in the Walt Disney World Marathon on January 11, 2004. We are both going to do the entire 26.2 miles. Ruthie will walk and I will run. This is a first for both of us. We have joined the Leukemia & Lymphoma Society’s Team in Training, the world’s largest endurance sports training program. We will be a part of the Palm Beach Area Chapter Team. Last January this Chapter sent 177 participants to the Walt Disney World Marathon and raised more than $360,000
If you would like to sponsor us, please e-mail us

Rbunkmann@msn.com and we will send you information along with a self-addressed, stamped envelope. Any help you can give us will be very appreciated. Your donation is 100% tax deductible. Donations support the Leukemia & Lymphoma Society. Our goal is to raise $3,800 between the two of us. Every dollar you donate will make a difference. It will either help us get closer to finding cures for these horrible diseases, or it will provide assistance and support to patients and their families.

For more information on Team in Training check out the Palm Beach Chapter’s website

http://www.teamintraining.org

The Leukemia & Lymphoma Society is an incredible organization. Since its founding in 1949, the Society has provided more than $280 million for research specifically targeting blood-related cancers. So many of you have been there for us when Seth was diagnosed and treated and have still been here for us since he passed away. The Society has been there for countless patients and their families. We would like for you to get to know each other a little bit better.

Thanks for all your support. It is all very appreciated. We are going to beat these diseases. The sooner we do, the more lives will be saved.
Be sure to check out our photo album and sign our guestbook

Much Peace Prayers Love and HOPE
Scott, Ruthie, Emily and from heaven Seth and Papa

Sunday, July 13, 2003 5:49 PM CDT

Hello everyone,
There are two big events coming up we want to encourage everyone take part in (in one form or another).

First there is the annual LIGHT THE NIGHT Walk… sponsored by The Leukemia & Lymphoma Society. The event is September 19th downtown West Palm Beach. I was not sure that we would have the emotional strength to participate this year. We had so hoped that Seth would carry his white survivor’s balloon this year. Last year his ANC was too low for him to participate. This year Leukemia & Lymphoma Society asked if Scott and I would give a speech at the kick off party for this event, which is on July 30th,the 8-month anniversary of Seth’s passing. We said YES.
This year we have formed “TEAM SETH”. So PLEASE sign up under his team. It is simple, you register, you collect donations and walk with us (you don’t have to walk) or just send a donation. The walk it’s self is a casual stroll down Flagler, about 2 miles. We might even be carrying a banner this year. Please let us know if you are walking for “Team Seth”. We are trying to get T-shirts with Seth’s picture on them for all those who raise money (we hope those folks walk with us too wearing the shirts) for Light the Night Walk.

For those of you who need more info………….
Light the Night

”The Light The Night® Walk is The Leukemia & Lymphoma Society's nationwide evening walk. Walkers carry illuminated balloons to celebrate and commemorate the lives touched by cancer. Funds raised will support our mission to cure leukemia, lymphoma, Hodgkin's disease and myeloma - and to improve the quality of life of patients and their families.
Against a twilight sky, a parade of flickering red and white balloons winds through communities, creating a breathtaking sight and a spirit of camaraderie among all who carry them.
Participants in Light The Night walks raise funds in support of The Leukemia & Lymphoma Society's mission. Participants raising $25 or more carry illuminated red balloons. Cancer survivors will carry illuminated white balloons. Dedication Banners designed to celebrate and commemorate those touched by cancer give participants a chance to personalize their efforts and honor friends and loved ones. T-shirts and other Light The Night rewards are provided to recognize participant fundraising. A post-walk celebration includes refreshments, music and family festivity.
Your participation will help save lives. Please join us in our fight against blood-related cancers, as we Light The Night with hope and raise funds to find a cure.
Anyone can participate. Children, adults, and seniors are all welcome. This is a casual walk with no fitness requirements.”

For more info or to sign up go to:
www.lightthenight.org or call them at 775-9954 or (888) 478-8550 (Toll Free)


West Palm Beach Kick-off Party: Wednesday, July 30th at The Palm Beach Kennel Club (located on the corner of Belvedere & Congress) from 6:30 p.m. through 8:30 p.m. Come join many of your colleagues from the West Palm Beach community for a night of live racing, food and fun as we kick-off the 2003 Light The Night® Walk. Attendees must R.S.V.P. to Alison no later than Monday, July 28th at folsoma@lls.org or (561) 775-9954. There will be a $5.00 charge at the door for all non-registered guests.

Light of Hope Newsletter
Our first Light The Night® monthly newsletter will be posted on our website by the end of the week. Go to www.lightthenight.org/pb and click on ‘Newsletter.’ Next, click on ‘Issue 1 – July’ to get all of your updates on our 2003 Light The Night® Walk

Leukemia & Lymphoma Society’s
TEAM IN TRAINING

We are so moved, touched, excited… we just got home from church. A number of our fellow parishioners are going to join Leukemia & Lymphoma Society’s Team in Training for the Disney Marathon. It is 26.2 miles walk or run through Disney World in Orlando Florida. There is also a half marathon, which is only 13 miles. Scott is going to run the 26.2 miles and I will walk it. This year the event is scheduled for January 11th 2004. In last year’s Disney Marathon the Team in Training from Palm Beach County raised over $360,000. The money goes to the Leukemia/Lymphoma Society, a wonderful organization that has been leading the way in funding research and offering support to those stricken with blood related cancers and their families. We will be sending out letters requesting donations. If anyone is interested in joining the Team in Training please let us know or go to
www.teamintraining.org. or call them at 775-9954 or (888) 478-8550 (Toll Free)

The folks from Team in Training give you a training schedule to prepare you for the event. The first meeting is August 9th for this marathon (it is also the sign up meeting). You do not have to ever have been in a marathon or even be an athlete. You just have to have the desire to kick blood-related cancers in the butt. We feel very honored that so many of you will be doing the marathon for Seth and all his young friends. If you go to the Team in Training web site you will see Seth’s picture in the “honored patients” section. There is an informational meeting this Tuesday night (July 13th) at the library on Summit Blvd starting at 6:00PM. I will be there.

PLEASE let us know if you are going to participate in Light the Night, Light the Night kick off party, or any of the Team in Training events.

We cannot say “Thank You” too soon or too often to all of you who participate in these wonderful events. There will be a day when we will find much better cures for these diseases. When we do, we will have people like you to thank.


Much Peace, Prayers, Love, check out our photo album and please sign our guestbook
Scott, Ruthie, Emily, and from heaven Seth and Papa

Friday, July 4, 2003 9:59 PM CDT

Hello everyone,

We know it has been a couple of weeks since we updated. Since Seth’s birthday we have been so emotionally drained.

We have been dealing with ordering Seth’s marker and having it installed. Seth’s marker was produce by a Monuments Eternal, a company in Liberty, South Carolina. The POST team at St. Mary’s referred us to this company. The owner of Monuments Eternal is Tony Charping. He is a wonderful man who has been very good to the families here in Palm Beach County who have lost children to cancer.

Tony finished work on Seth’s marker in late June. He decided to personally deliver Seth’s and another child’s marker. He and a friend loaded the markers into a small Honda Civic and drove more than 900 miles to South Florida. (Each marker weighs about 250 pounds so that little car was carrying quite a load). Tony wanted to install the markers himself to save us the cost of the installation fee from the cemetery, Our Lady Queen of Peace. (Installation of the marker is not included in the cost of the funeral.) Unfortunately the management of the cemetery informed Tony that if he installed the markers then they (the cemetery) would not cover the stone if it was damaged by lawn mowers…..etc. So Tony decided just to deliver them and saved us the cost of shipping. Tony has a big heart.

We paid the cemetery on Wednesday the installation fee as we found out Tony would be here on Thursday to deliver the stones. Scott, Annette, Sandy (from the POST) and I met Tony and his friend John at the cemetery Thursday at 9:30. We needed to “inspect” the stone so if it were damaged after it changed hands we would know where it happened. The stone is beautiful. There was so much more we wanted to put on it…but you are only allowed so much space. The cemetery said they had 2 funerals yesterday (Thursday) and they would be closed on Friday the 4th so the stone would not be installed until next week. The stones would be left sitting on a stand outside near the main office. I was not happy about that but they assured me the stones would be safe. If either of the stones did end up missing then the cemetery would be responsible for it. I went back later that day to water Seth’s spot in the world and found the stone had been installed. I just broke down and cried. We have included a picture in the photo section.

Below is the message I wrote a year ago…….hmmm only one year ago.
"Happy 4th of July....Seth had Chemo today. We saw Dr Gowda. He reviewed the CT scan, chest xray and Gallium scan. He stated there is a remarkable shrinkage in the lymph nodes in all areas, he stated this what they expected. Some of the areas it is hard to see where there was a problem. This good news does not change his Chemo schedule. He stated although he responded well they will continue to hit him hard with chemo in order to (as he tells Seth) get rid of ALL the bad guys. We will see Dr Baynham next Tuesday regarding the tumor in his leg although you can no longer feel the swelling in the leg . The only other news is that Seth's "Papa" my father was also diag with cancer this week...lung cancer. He is still going through all the testing and we will know more next Wed. Please continue to pray for our family. Thank you for all the support....Love The Bunkelmann Family"

One year ago today we were still reeling from the shock of Seth’s diagnosis, but we had every reason to be optimistic. Seth had such good doctors and he was responding so well to the treatments. Everyone thought that Seth was going to do fine. A year ago today there was so much hope. Seven months ago today we buried him. Less than six months later Seth’s Papa Atwell passed away.

Time seemed to go by too fast.

“When a door closes…look for an open window…but it may take a while to feel the breeze.” Anonymous

Be sure to check out the photo section.

Much Peace Prayers Love and HOPE for a cure for all childhood cancers
Scott, Ruthie, Emily and from heaven Seth and Papa

Friday, June 20, 2003 8:25 PM CDT

Hello everyone,

Tomorrow would have been Seth’s 6th birthday if he were still here on earth with us. He will always be 5 and ½. We paid for his marker (headstone) this past Thursday. I wish the money had gone towards buying him birthday presents. The marker should arrive from North Carolina sometime next week. We will post a picture once it is installed.

Last year before Seth was diagnosed with cancer I had asked him what he wanted to do for his birthday. I was sure he would want pink donuts from his friend Miss Diane at Dunkin Donuts. He said he wanted cupcakes to share with his friends at school. I am sure that was because he had seen so many kids prior to this having birthday cupcakes at school. So after talking with Miss Leslie at RCCA we brought cupcakes to his school today in honor of his birthday. We also donated a dozen new books in his memory. Yes there were several train books in the bunch. The school was wonderful in honoring Seth. We (Scott, Emily and I) got there about noonish. The class was studying a camping theme. The staff very creatively simulated a grill complete with fish and marshmallows. They had a spot for the kids to fish. They even had a mountain to climb. In side the classroom they had sleeping bags and tents set up for rest time. Miss Leslie read one of the books we brought (Thomas the Train). They all sang “Seth’s been working on a railroad “. After the kids ate their lunch they each got a cupcake and were allowed to blow out a candle after making a wish. A few of the kids were intent on talking to us about Seth. One little girl said, “you know Seth is up there (pointing towards heaven). She also let me know that another little boy in her class also likes trains just like Seth. Another little girl just chatted about Seth liking trains. Before we left the parking lot we released a Happy Birthday balloon. It was wonderful to spend some time at the preschool in honor of his birthday. A special Thank You to Miss Leslie, Miss Lori Ann, MissArjean, Mr. John, Miss Erin, Miss Emily and all the children at the preschool at RCCA for honoring our sweet little boy.

It was a year ago today (June 20th) that Seth left the hospital after he was first diagnosed. He had spent ten days there and was anxious to go home. We were hoping for him to be home for his birthday so we were all very happy when Dr. Gouda told us we could take him home. A year ago we were so optimistic that Seth would do well and have many, many more birthdays to celebrate. June 21st will always be his birthday. It is a day that will always be special. It will also always be a difficult day for us.

Emily’s birthday is Tuesday the 24th. She will be 3 years old.



Missing You

No words I write can ever say,
How much I miss you everyday.
As time goes by the loneliness grows,
How I miss you...nobody knows.
I think of you in silence,
I often speak your name.
But all I have are memories,
And a photo in frame.
No one see's me weep.
But the love I have for you,
Is in my heart and mine to keep.
I never stopped loving you,
I don't think I ever will.
Deep inside my heart,
You are with me still.
Heartaches this world are many,
But mine is worse than any.
My heart still aches as I whisper low,
"I need you....and miss you so."
The things we feel so deeply,
Are often the hardest things to say.
But I just can't keep quiet anymore,
So I'll tell you anyway.
There is a place in my heart,
That no one can fill.
I love you...and I always will.

Author Unknown




We will spend tomorrow as a little family. We will release some balloons in his honor.

Seth we miss you so much. Happy Birthday and chugga chugga choo choo sweet boy. We love you!!!
.
Be sure to check out the photo album in memory of Seth’s birthdays past.

Please sign his guestbook.

Much Peace Scott, Ruthie, Emily and from heaven Seth and Papa.

Friday, June 20, 2003 8:22 PM CDT

Hello everyone,

Tomorrow would have been Seth’s 6th birthday if he were still here on earth with us. He will always be 5 and ½. We paid for his marker (headstone) this past Thursday. I wish the money had gone towards buying him birthday presents. The marker should arrive from North Carolina sometime next week. We will post a picture once it is installed.

Last year before Seth was diagnosed with cancer I had asked him what he wanted to do for his birthday. I was sure he would want pink donuts from his friend Miss Diane at Dunkin Donuts. He said he wanted cupcakes to share with his friends at school. I am sure that was because he had seen so many kids prior to this having birthday cupcakes at school. So after talking with Miss Leslie at RCCA we brought cupcakes to his school today in honor of his birthday. We also donated a dozen new books in his memory. Yes there were several train books in the bunch. The school was wonderful in honoring Seth. We (Scott, Emily and I) got there about noonish. The class was studying a camping theme. The staff very creatively simulated a grill complete with fish and marshmallows. They had a spot for the kids to fish. They even had a mountain to climb. In side the classroom they had sleeping bags and tents set up for rest time. Miss Leslie read one of the books we brought (Thomas the Train). They all sang “Seth’s been working on a railroad “. After the kids ate their lunch they each got a cupcake and were allowed to blow out a candle after making a wish. A few of the kids were intent on talking to us about Seth. One little girl said, “you know Seth is up there (pointing towards heaven). She also let me know that another little boy in her class also likes trains just like Seth. Another little girl just chatted about Seth liking trains. Before we left the parking lot we released a Happy Birthday balloon. It was wonderful to spend some time at the preschool in honor of his birthday. A special Thank You to Miss Leslie, Miss Lori Ann, MissArjean, Mr. John, Miss Erin, Miss Emily and all the children at the preschool at RCCA for honoring our sweet little boy.

It was a year ago today (June 20th) that Seth left the hospital after he was first diagnosed. He had spent ten days there and was anxious to go home. We were hoping for him to be home for his birthday so we were all very happy when Dr. Gouda told us we could take him home. A year ago we were so optimistic that Seth would do well and have many, many more birthdays to celebrate. June 21st will always be his birthday. It is a day that will always be special. It will also always be a difficult day for us.

Emily’s birthday is Tuesday the 24th. She will be 3 years old.



Missing You

No words I write can ever say,
How much I miss you everyday.
As time goes by the loneliness grows,
How I miss you...nobody knows.
I think of you in silence,
I often speak your name.
But all I have are memories,
And a photo in frame.
No one see's me weep.
But the love I have for you,
Is in my heart and mine to keep.
I never stopped loving you,
I don't think I ever will.
Deep inside my heart,
You are with me still.
Heartaches this world are many,
But mine is worse than any.
My heart still aches as I whisper low,
"I need you....and miss you so."
The things we feel so deeply,
Are often the hardest things to say.
But I just can't keep quiet anymore,
So I'll tell you anyway.
There is a place in my heart,
That no one can fill.
I love you...and I always will.

Author Unknown




We will spend tomorrow as a little family. We will release some balloons in his honor.

Seth we miss you so much. Happy Birthday and chugga chugga choo choo sweet boy. We love you!!!
.
Be sure to check out the photo album in memory of Seth’s birthdays past.

Much Peace Scott, Ruthie, Emily and from heaven Seth and Papa.

Saturday, June 14, 2003 9:57 PM CDT

Dear Friends,

This is Seth’s Daddy writing again.

My first Father’s Day was June 21, 1998. A much more significant event happened on that day. It was Seth’s first birthday.

June 16, 2002, was the last Father’s Day I spent with my son. We in the hospital, but we were together. It was the day before he was to start his first chemo treatments.

Tomorrow, June 15, 2003, is my first Father’s Day as a bereaved parent.

Many years ago I learned to be happy with the things I had and not worry much about the things I didn’t have. I am still blessed with a wonderful wife and daughter. I also have my father, mother, sister, brother, mother-in law, sister-in-law, brother-in-law, three nieces and a nephew. They are all blessings in my life. I also have many dear friends who I also love and am glad they are a part of my life. I am thankful for all of them.

But this Father’s Day I am without my son. Even for all that is good in my life there is still a heavy sadness for what is wrong. Seth will not be with me tomorrow, or for any Father’s Day for the rest of my life.

Seth was born on Saturday, June 21, 1997. I knew I wanted to be a Daddy, but until that day I don’t think I could have told you why. At 6.28 PM on that Saturday afternoon I saw my son’s face for the first time. It was a moment in my life that I will always cherish. It was also at that moment when I realized why I wanted to be a Daddy. I was Seth’s Daddy, and he redefined who I was as a person.

A man can do many things with his life. There are mountains to climb, careers to pursue dreams to follow. Yet there is no bigger challenge that a man can face than being a father. Most men can father a child. Being a father TO a child is another matter. Being a father means to continually strive for that balance of unconditional love, abundant patience, stern but fair discipline, understanding their feelings and building trust. There are more factors involved, but I think you know what I mean. Being a father isn’t easy.

While fatherhood has it endless responsibilities is also has its endless rewards. To have that little person look at you with those adoring little eyes and then, with that sweet little voice say, “Daddy”. Nothing compares to hearing your child say that word. I never grow tired of hearing it.

I was so fortunate to have grown up in a wonderful family. My father and mother gave me a stable home. Both are loving parents and outstanding role models. They sacrificed so much for my sister my brother and me. I will always be thankful for everything my father and mother have done for me and continue to do for my little family and me.

My wife also came from a wonderful family. Jerry is a wonderful mother-in-law. Wally was a wonderful father-in-law. Three weeks ago Wally left us to go ride trains with Seth in Heaven. We will miss him tomorrow too.

This past week I had the opportunity to work on some television interviews with Jack Nicklaus. Jack is probably the greatest golfer of all time. He has won 100 PGA Tournaments and 20 Major Tournaments. Nobody else has come close to that (Tiger Woods might someday, but it will take a while). Jack is also a very successful businessman. He has done well with his life. When an interviewer asked him what he was most proud of he said “My family”. Jack and his wife have five children, fifteen grandchildren and one more grandchild on the way. Even with all his success, wealth and fame, Jack knows what really matters in life. This is probably what I respect most about him. Our families and our children should always be our top priority.

God blessed me by making me Seth and Emily’s Daddy. Emily is here. She brings sunshine to my life everyday. Seth is not here. That hurts…bad. He is in my heart. My love for him grows every day. The disease took him away from us. I couldn’t stop that. I feel that as his father I should have been able to protect him and save him. But I learned that just because I was his father does not mean that I can do everything.

Cancer took him away. But Seth will always be my son, my little boy, and my trainman. I will always be his Daddy. Nothing, not even death, can take that away from me.

Father’s Day will not be easy for me this year. Maybe this day will never be easy again. Being a father isn’t easy. There are great risks. There are also great rewards. Seth was here with me for five years, five months and nine days. Every minute of that time was a blessing. Every day I think that my time with him was too short.

I miss you, Son.


Peace,

Seth’s Daddy

* A note from Seth’s mommy: be sure to check out the photo section. It is in honor of my wonderful husband and beautiful boy.

Sunday, June 8, 2003 8:06 PM CDT

Hello everyone,

A year ago on Friday Seth had his first MRI that started it all. A year ago yesterday June 7th, 2002 Dr Baynhan told us Seth might have a bone infection but felt more strongly that it was cancer. He felt it was probably Ewings Sarcoma. After we left Dr Baynhan’s office that day we went to see Seth’s pediatrician Dr Tommy Schechtman. It was his birthday. His office was full of Mickey Mouse balloons. He gave several to Seth. Seth was delighted we were devastated. Seth had his first biopsy on June 10th. June 17th his first chemo. June 21st is his birthday. He would have been 6 years old this year. He will forever be 5 and ½ in our hearts. Emily will be 3 on June 24th. June is going to be an emotionally tough month for us as a family. Scott said May and June will always be months that hold sad memories for us. We use to get so excited about June.


Friday we attended Jalen’s funeral and burial.


CAMP SUNSHINE
It is very difficult to put in to words the experience we got from attending Camp Sunshine in Maine. It was cold!! We were with about 25 other families that lost children to cancer. One of the families lost a child about 12 years ago and yet another one attending it was only a month ago. This was the 2nd bereavement session Camp Sunshine hosted. They are looking at holding them more than once a year. Generally they only open up the session to families that have had their children attend the regular camp. We were told we were the first family they made the exception for. We were the only family from Florida. We do plan on attending next year and that should speak volumes for our experience. We hope other friends from our area and the Caringbridge community will join us as well. The experience will benefit you if this was your only child or if you have other children who are also trying to deal with the loss. Some parents came with their spouse, some with significant others and some came alone. There were three families that brought a grandparent with them so we hope to take my mom with us next year. They split the siblings up in to age appropriate groups. The teenage group called themselves “the nine that shine plus one is fine”. They were amazing to watch. They really made the most of their time there together and working with the camp counselors. The camp grounds itself is beautiful. Let me just say it is the “Disney World” of campgrounds. We did not sleep in tents but rather dorm style lodging. They food is excellent. There are numerous activities through out each day…. you will not get bored. Some of the volunteers made a photo CD of the weekend. We will purchase 2 and leave one with the POST team so if anyone wants to check it out.
A special THANK YOU to all of you who helped water Seth’s little spot in the world while we were away!!

MOM
She is doing as well as she can. It has been 2 weeks since Dad left us. She said she has her moments. I am glad Dori, Todd and Shayn are living with her right now.

Please visit the site of a 4-year-old recently diag with a brain tumor. Judy the mother, just started her website.

http://caringbridge.org/pa/julialevy


Also listed below is Jalen’s website who recently passed away. Our hearts go out to Jeanette, Dale and their extended family for their loss.

Little Cam came through surgery and the tumor was removed. Part of his rib also had to be removed. He will be going back to Duke for further radiation. His site is also listed below.

Be sure to check our Camp Sunshine photos.

Much Peace Prayers Love and HOPE for a cure for all childhood cancers
Scott, Ruthie, Emily and from heaven Seth and Papa

Sunday, June 8, 2003 8:02 PM CDT

Hello everyone,

A year ago on Friday Seth had his first MRI that started it all. A year ago yesterday June 7th, 2002 Dr Baynhan told us Seth might have a bone infection but felt more strongly that it was cancer. He felt it was probably Ewings Sarcoma. After we left Dr Baynhan’s office that day we went to see Seth’s pediatrician Dr Tommy Schechtman. It was his birthday. His office was full of Mickey Mouse balloons. He gave several to Seth. Seth was delighted we were devastated. Seth had his first biopsy on June 10th. June 17th his first chemo. June 21st is his birthday. He would have been 6 years old this year. He will forever be 5 and ½ in our hearts. Emily will be 3 on June 24th. June is going to be an emotionally tough month for us as a family. Scott said May and June will always be months that hold sad memories for us. We use to get so excited about June.


Friday we attended Jalen’s funeral and burial.


CAMP SUNSHINE
It is very difficult to put in to words the experience we got from attending Camp Sunshine in Maine. It was cold!! We were with about 25 other families that lost children to cancer. One of the families lost a child about 12 years ago and yet another one attending it was only a month ago. This was the 2nd bereavement session Camp Sunshine hosted. They are looking at holding them more than once a year. Generally they only open up the session to families that have had their children attend the regular camp. We were told we were the first family they made the exception for. We were the only family from Florida. We do plan on attending next year and that should speak volumes for our experience. We hope other friends from our area and the Caringbridge community will join us as well. The experience will benefit you if this was your only child or if you have other children who are also trying to deal with the loss. Some parents came with their spouse, some with significant others and some came alone. There were three families that brought a grandparent with them so we hope to take my mom with us next year. They split the siblings up in to age appropriate groups. The teenage group called themselves “the nine that shine plus one is fine”. They were amazing to watch. They really made the most of their time there together and working with the camp counselors. The camp grounds itself is beautiful. Let me just say it is the “Disney World” of campgrounds. We did not sleep in tents but rather dorm style lodging. They food is excellent. There are numerous activities through out each day…. you will not get bored. Some of the volunteers made a photo CD of the weekend. We will purchase 2 and leave one with the POST team so if anyone wants to check it out.
A special THANK YOU to all of you who helped water Seth’s little spot in the world while we were away!!

MOM
She is doing as well as she can. It has been 2 weeks since Dad left us. She said she has her moments. I am glad Dori, Todd and Shayn are living with her right now.

Please visit the site of a 4-year-old recently diag with a brain tumor. Judy the mother, just started her website.

http://caringbridge.org/pa/julialevy


Also listed below is Jalen’s website who recently passed away. Our hearts go out to Jeanette, Dale and their extended family for their loss.

Little Cam came through surgery and the tumor was removed. Part of his rib also had to be removed. He will be going back to Duke for further radiation. His site is also listed below.


Much Peace Prayers Love and HOPE for a cure for all childhood cancers
Scott, Ruthie, Emily and from heaven Seth and Papa

Sunday, June 8, 2003 8:01 PM CDT

Hello everyone,

A year ago on Friday Seth had his first MRI that started it all. A year ago yesterday June 7th, 2002 Dr Baynhan told us Seth might have a bone infection but felt more strongly that it was cancer. He felt it was probably Ewings Sarcoma. After we left Dr Baynhan’s office that day we went to see Seth’s pediatrician Dr Tommy Schechtman. It was his birthday. His office was full of Mickey Mouse balloons. He gave several to Seth. Seth was delighted we were devastated. Seth had his first biopsy on June 10th. June 17th his first chemo. June 21st is his birthday. He would have been 6 years old this year. He will forever be 5 and ½ in our hearts. Emily will be 3 on June 24th. June is going to be an emotionally tough month for us as a family. Scott said May and June will always be months that hold sad memories for us. We use to get so excited about June.


Friday we attended Jalen’s funeral and burial.


CAMP SUNSHINE
It is very difficult to put in to words the experience we got from attending Camp Sunshine in Maine. It was cold!! We were with about 25 other families that lost children to cancer. One of the families lost a child about 12 years ago and yet another one attending it was only a month ago. This was the 2nd bereavement session Camp Sunshine hosted. They are looking at holding them more than once a year. Generally they only open up the session to families that have had their children attend the regular camp. We were told we were the first family they made the exception for. We were the only family from Florida. We do plan on attending next year and that should speak volumes for our experience. We hope other friends from our area and the Caringbridge community will join us as well. The experience will benefit you if this was your only child or if you have other children who are also trying to deal with the loss. Some parents came with their spouse, some with significant others and some came alone. There were three families that brought a grandparent with them so we hope to take my mom with us next year. They split the siblings up in to age appropriate groups. The teenage group called themselves “the nine that shine plus one is fine”. They were amazing to watch. They really made the most of their time there together and working with the camp counselors. The camp grounds itself is beautiful. Let me just say it is the “Disney World” of campgrounds. We did not sleep in tents but rather dorm style lodging. They food is excellent. There are numerous activities through out each day…. you will not get bored. Some of the volunteers made a photo CD of the weekend. We will purchase 2 and leave one with the POST team so if anyone wants to check it out.
A special THANK YOU to all of you who helped water Seth’s little spot in the world while we were away!!

MOM
She is doing as well as she can. It has been 2 weeks since Dad left us. She said she has her moments. I am glad Dori, Todd and Shayn are living with her right now.

Please visit the site of a 4-year-old recently diag with a brain tumor. Judy the mother, just started her website.

http://caringbridge.org/pa/julialevy


Also listed below is Jalen’s website who recently passed away. Our hearts go out to Jeanette, Dale and their extended family for their loss.

Little Cam came through surgery and the tumor was removed. Part of his rib also had to be removed. He will be going back to Duke for further radiation. His site is also listed below.


Much Peace Prayers Love and HOPE for a cure for all childhood cancers
Scott, Ruthie, Emily and from heaven Seth and Papa

Wednesday, June 4, 2003 8:28 PM CDT

Once again cancer has stolen another precious life from us too soon. Sweet little Jalen lost his battle with cancer yesterday June 3, 2003. Please visit his site that is listed below.

Little Cam had surgery today to remove a “spot” from his chest. His site is also listed below.

PLEASE remember all the children (and our big friends) who have lost their battle with this monster. Cancer is harsh! It is harsh on the mind, body, soul and families of any one affected by this terrible disease. Please continue to pray for the children (and their families) who have lost this battle and those who are still fighting.

Much Peace Prayers Love and HOPE for a cure for all childhood cancers
Scott, Ruthie, Emily and from heaven Seth and Papa

Friday, May 30, 2003 10:23 PM CDT

Well friends it has been 6 months today that our sweet little boy left us. It seems not that long ago we were praying so hard that he would grow some white blood cells.

Dad’s wake was Wednesday night at Tillman’s funeral home. There were so many people there. Dad looked so good…. I know that sounds strange to say but when cancer invades your life your body takes a beating. Dad was a Master Sargent in the Army in Korea. He flew as the observer in Mosquito planes. He was shot down once behind enemy lines and escaped. He got a Bronze Star. So on Thursday he was buried with full military honors. Instead of flowers on his casket there was the American Flag. There were 3 Army personnel there when he was entombed at the cemetery. My heart sank when they saluted as the casket went by and again when they played taps. I am sure that made him very proud…I know I was. Gil Gates (mom and dad’s wonderful friend and neighbor of the last 37 years) gave the eulogy. He did such beautiful tribute to my father just as Barbara Abernathy did for Seth. For the last 7 months Gil use to walk with my father at night as long dad was up to it and chat. Dad enjoyed his walks with Gil. Gil closed the eulogy by saying he was sure dad heard a train whistle during his final moments here on earth and he heard Seth say “come on Papa it is time to go”.

I spent some time with my Aunt Barbara (my mother’s sister) before and after dad’s funeral. She lost her mother and 2 of her 3 boys in a year (about 18 years ago). It helped just talking with her. I had wished we had more time.

We attend a memorial service for Seth today at St Mary’s. They honored all the children that have died there from cancer in the last 2 years. There were 19 children that were honored…way way too many. Jeanette, Jalen’s mother, came to show her support for our children…. such a brave young woman. (Jalen is at home with Hospice care. See the link below) The hardest parts of the service were lighting a candle in his honor and the picture presentation. Seeing all those faces, especially Seth’s just was heart wrenching.

We will write more about our trip (bereavement camp in Maine) soon. It is VERY difficult to sum it up in to words. But I will say we are going back next year and that should speak volumes about the experience.

Be sure to check out the new pictures.


Much Peace Love Prayers and HOPE for a cure for all childhood cancers
Scott, Ruthie, Emily and from heave Seth and Papa

Monday, May 26, 2003 11:22 PM CDT

Hello Friends and Family,

We just got home from the Camp Sunshine (Maine). I will talk about that trip at another time.

My sister Dori called us on Sunday May 25th, a little after 12 noon (remember we were in Maine). My father passed away at 12:05 PM. Please continue to pray for our family.

You can leave my mother a message here as well as she reads Seth's guestbook (her name is Jerry).

I feel we have gone WAY WAY over the top on the crap meter for one year.

Much Peace Prayers Love and HOPE for a cure for all childhood cancers

Ruthie, Scott, Emily and from heaven Seth and Papa

Monday, May 26, 2003 10:58 PM CDT

Hello Friends and Family,

We just got home from the Camp Sunshine (Maine). I will talk about that trip at another time.

My sister called us on Sunday May 25th, a little after 12 noon (remember we were in Maine). My father passed away at 12:05. Please continue to pray for our family.

Much Peace Prayers Love and HOPE for a cure for all childhood cancers

Ruthie, Scott, Emily and from heaven Seth and Papa

Wednesday, May 21, 2003 9:22 PM CDT

We are leaving for Maine in the early morning hours. It is with a heavy heart and mixed emotions. It is so unthinkable that we are going because we lost our Seth. It should be because it is summer camp and fun, not trying to deal with the death of our son. Thank you to all my friends who volunteered to water Seth’s little spot in the world.

I am also heavy hearted because of my father as well. If you did not read today’s entry the news from the Dr was not good. The cancer is worse. The Dr is giving him a month. A month from today would be Seth’s 6th birthday…if he were still with us. Dad is being discharged tomorrow with Hospice care at home. To all our friends from Holy Name call my mom and go visit…. PLEASE! She is doing the best she can. She looked very emotionally drained today. She said the night times are the hardest.

The next couple of weeks are going to be very difficult for us. First there is Dad (need I say more). The 30th will be 6 months since Seth left us. The anniversaries of everything with Seth (diagnosis, chemo…) Seth’s marker should be in here in the next 3 weeks. Please keep us in your prayers (and that we have a safe trip…. I hate flying).

I know I am always asking for prayers for our young friends. There is not enough links at the bottom of Seth’s page to list them all. But please remember especially Jalen, Cam, Zman, Zac, Katia, Ryon, and (our big friends with cancer) Dad and Diane. And everyone else affected with this horrible disease.

Much Peace Prayers Love and HOPE for a cure for all childhood cancers
Ruthie, Scott, Emily and from heaven Seth

Wednesday, May 21, 2003 8:13 AM CDT

UPDATE****9:15AM WEDNESDAY**** I just got off the phone with mom. I am not sure how to write this sentence, but the Dr is giving my dad a month. He is going home with Hospice Care. Please pray for my family.

UPDATE *** 7:00AM WEDNESDAY****
DAD’S SCANS ARE MUCH WORSE. THE DR IS STARTING HIM ON MORPHINE. MOM HAS GONE TO MEET WITH THE DR.


(THS WAS WRITTEN LAST NIGHT Tuesday May 20th)
Dad called mom this morning at 5:00AM telling her he was having trouble breathing (he had 2 other episodes like this). Poor mom!! He did call the nurse too and they gave him a breathing treatment. He has fluid in the lungs again. He has had to have it removed before. They took 300cc out of Seth’s lungs the day before he died. The Dr goes in through his back with a long needle and extracts it. Dad had his CAT scan and another scan this morning. The oncology Dr will meet with both of them tomorrow. The waiting game……… HATE the waiting game. The mind is such a terrible place to play when you have to play the waiting game.
They have given him breathing treatments today, which have helped. He has eaten a little bit today. He is looking scruffy because he has not shaven.

As it stands right at this minute we are going to Maine to attend the bereavement session at Camp Sunshine. We are supposed to leave Thursday early in the morning and return late on Monday. So all my wonderful friends who volunteered to water Seth’s little spot in the world get your buckets ready and THANK YOU!!! We will take pictures and post them when we return. Emily is going with us as well. There will be a playgroup for her.

We just got back from visiting friends at the hospital. PLEASE continue to pray for Jalen and his family. He is an amazing little boy with an equally amazing mommy. His link is at the bottom of Seth’s page. Jalen has been at St Mary’s for at least the last 9 weeks. He is going home with Hospice care tomorrow.

Also our little friend Cam needs prayers. His link is at the bottom of Seth’s page as well.

I will up date one more time before we leave…if we leave.

Much Peace Prayers Love and HOPE for a cure for all childhood cancers.
Ruthie, Scott, Emily and from heaven Seth

Wednesday, May 21, 2003 6:20 AM CDT

UPDATE *** 7:00AM WEDNESDAY****
DAD’S SCANS ARE MUCH WORSE. THE DR IS STARTING HIM ON MORPHINE. MOM HAS GONE TO MEET WITH THE DR.


(THS WAS WRITTEN LAST NIGHT Tuesday May 20th)
Dad called mom this morning at 5:00AM telling her he was having trouble breathing (he had 2 other episodes like this). Poor mom!! He did call the nurse too and they gave him a breathing treatment. He has fluid in the lungs again. He has had to have it removed before. They took 300cc out of Seth’s lungs the day before he died. The Dr goes in through his back with a long needle and extracts it. Dad had his CAT scan and another scan this morning. The oncology Dr will meet with both of them tomorrow. The waiting game……… HATE the waiting game. The mind is such a terrible place to play when you have to play the waiting game.
They have given him breathing treatments today, which have helped. He has eaten a little bit today. He is looking scruffy because he has not shaven.

As it stands right at this minute we are going to Maine to attend the bereavement session at Camp Sunshine. We are supposed to leave Thursday early in the morning and return late on Monday. So all my wonderful friends who volunteered to water Seth’s little spot in the world get your buckets ready and THANK YOU!!! We will take pictures and post them when we return. Emily is going with us as well. There will be a playgroup for her.

We just got back from visiting friends at the hospital. PLEASE continue to pray for Jalen and his family. He is an amazing little boy with an equally amazing mommy. His link is at the bottom of Seth’s page. Jalen has been at St Mary’s for at least the last 9 weeks. He is going home with Hospice care tomorrow.

Also our little friend Cam needs prayers. His link is at the bottom of Seth’s page as well.

I will up date one more time before we leave…if we leave.

Much Peace Prayers Love and HOPE for a cure for all childhood cancers.
Ruthie, Scott, Emily and from heaven Seth

Tuesday, May 20, 2003 9:58 PM CDT

Dad called mom this morning at 5:00AM telling her he was having trouble breathing (he had 2 other episodes like this). Poor mom!! He did call the nurse too and they gave him a breathing treatment. He has fluid in the lungs again. They took 300cc out of Seth’s lungs the day before he died. The Dr goes in through his back with a long needle and extracts it. Dad had his CAT scan and another scan this morning. The oncology Dr will meet with both of them tomorrow. The waiting game……… HATE the waiting game. The mind is such a terrible place to play when you have to play the waiting game.
They have given him breathing treatments today, which have helped. He has eaten a little bit today. He is looking scruffy because he has not shaven.

Any support you can give them while we are gone is GREATLY appreciated.

As it stands right at this minute we are going to Maine to attend the bereavement session at Camp Sunshine. We are supposed to leave Thursday early in the morning and return late on Monday. So all my wonderful friends who volunteered to water Seth’s little spot in the world get your buckets ready and THANK YOU!!! We will take pictures and post them when we return. Emily is going with us as well. There will be a playgroup for her.

We just got back from visiting friends at the hospital. PLEASE continue to pray for Jalen and his family. He is an amazing little boy with an equally amazing mommy. His link is at the bottom of Seth’s page. Jalen has been at St Mary’s for at least the last 9 weeks. He is going home with Hospice care tomorrow.

Also our little friend Cam needs prayers. His link is at the bottom of Seth’s page as well.

A very HAPPY BIRTHDAY to my sister Dori today (notice I did not mention your age)!!!!

I will up date one more time before we leave…if we leave.

Much Peace Prayers Love and HOPE for a cure for all childhood cancers.
Ruthie, Scott, Emily and from heaven Seth

Monday, May 19, 2003 9:13 PM CDT

Some times I go back and forth about what to write in the journal. Do I pour my heart out? Do I write a “prettied up” version? Some days it is easier to make that decision then others. Today is one of them. I know my “faith” has changed a lot since Seth was diagnosed last year. It was a slow change at first but then when things changed for the worst it moved quickly. I feel it is the only way for me to survive as a person. I feel my faith has truly been tested over this last year. I know I took my faith for granted before. When my soon to be 5 year old son and my father were diagnosed with cancer in the same month I thought OK is this where that “God does not give you any more than you can handle” statement comes in. And then a short 6 months later losing that precious child to the “most treatable and curable cancer” well if that does not shake your faith or at least make you question a few things…well I would like to meet you. I would be amazed if anyone calls me on this one.

SO many people have asked us if we are angry with God or the doctors or even other cancer kids who are doing well. The answer is NO. I feel cancer is man made. God did not give my child or my father cancer. My father smoked for most of his life. He knew it could give him cancer. Seth my sweet boy, I am not sure how you got cancer but I am 100% sure God did not choose to give it to you. Some people have said “well God must have wanted him for an angel”. I don’t believe that. If I did then I would have to believe God gave him cancer. That would mean God knew he would suffer so very much. That thought did not sit well with me. Fr Lacy at our parish said “if God did this to children he would not work for him”. I believe him. I believe the "Foot Prints In the Sand", He was there to get us through. We have had other comments made to us that “God took Seth”. No, cancer took Seth. God was there to comfort him when Seth was no longer able to fight this monster. He became an angel because he his body could not win the battle. We have also had comments “if our faith was stronger we would not be in pain”, obviously someone who has never lost a child.

Fr Leo said this past Sunday that “to see God is to see him in others”. That really hit me. So if I see God in others is it only the good? Is God anything but good? I do not know any one who would want to take my child or anyone’s child from them. When Fr Leo said “if we see God in others that is true love”. I think about all the wonderful people that have touched our lives in this last year. We have been so blessed (an understatement) to have so many friends that have been there and still are there. We have been blessed to meet so many new friends in this journey…many who have become a part of our extended family. I could not have gotten through this with out my mother (who instilled my faith), my sister or my husband.

My father is doing a bit better today. He is still on oxygen and IV. Tomorrow he has a CAT scan and he meets with his oncology Dr and hopefully we will know more. Thank you for all your prayers and support. My father, mother and sister think we should still go to Camp Sunshine this weekend. We will make our decision tomorrow.

I took the following from George Carlin....

"Remember, spend some time with your loved ones, because they are not going
to be around forever. Remember, say a kind word to someone who looks up to
you in awe, because that little person soon will grow up and leave your
side. Remember, to give a warm hug to the one next to you, because that is
the only treasure you can give with your heart and it doesn't cost a cent.
Remember, to say, "I Love You" to your partner and your loved ones, but most
of all mean it. A kiss and an embrace will mend hurt when it comes from
deep inside of you. Remember to hold hands and cherish the moment for
someday that person will not be there again. Give time to love, give time
to speak, and give time to share the precious thoughts in your mind.

Life is not measured by the number of breaths we take, but by the moments
that take our breath away."

Much Peace Love Prayers and HOPE for a cure for all childhood cancers

Sunday, May 18, 2003 10:36 AM CDT

Hello everyone,

Dad is not doing well. For those of you that don’t know dad has cancer. He was diag. last year shortly after Seth was diag.
Dad was admitted to Good Sam on Friday. His weight was 101. He is on oxygen and IV. He called mom this morning before she went to church. He said he was in agony all night. He asked her to pray for the Lord to take him home.
Keep them in your prayers.

Much Peace Prayers Love and HOPE for a cure for all childhood cancers
Ruthie and from heaven Seth

Sunday, May 18, 2003 10:31 AM CDT

Hello everyone,

Dad is not doing well. He was admitted to Good Sam on Friday. His weight was 101. He is on oxygen and IV. He called mom this morning before she went to church. He said he was in agony all night. He asked her to pray for the Lord to take him home.
Keep them in your prayers.

Much Peace Prayers Love and HOPE for a cure for all childhood cancers
Ruthie and from heaven Seth

Sunday, May 11, 2003 8:32 PM CDT

Hello everyone,

I guess I could just say today was a nice day and leave it at that but it was not. It has been a very painful day. It hurts like hell not having both of our children here with us. I will tell you …I feel like emotionally, a very big truck hit me. I know I will never feel about Mother’s Day the way I use too. I know NOTHING will ever feel the same way it use too. We never did any “major” celebrating on Mother’s Day before but we were all together. I know I use to take that time for granted. I remember the yellow robe Scott gave me on Mother’s Day the month before Seth was born. I remember the sunglasses Seth gave me before I had Emily. I remember the Mother’s Day celebration at his preschool last year. It breaks my heart to have no new memories to create with Seth.

Today we went to the cemetery where we released two balloons for Seth. One was a “Thomas the Train” and the other was a “we love you”. We wrote messages all over them and watched them float away. We watered his little piece of land and his flowers. We also went out to Wellington to water his tree that was planted in his memory.

There were a lot of cars at the cemetery today. You could almost tell that there were some people visiting the mothers that they had lost. There were also mothers there visiting the graves of children they had lost.

Please visit the site below which will take you to Seth’s memorial quilt. Just click on the site and go to “enter”. Then find Seth’s name and click on it. Once you are there turn up your sound and sing along. We will keep adding to it.

A special thank you to Zenovia and all the students at Palm Beach Gardens High School that participated in the American Cancer Society’s “Relay for Life”. We donated money for a luminary in Seth’s name. We spent a little time out there late Friday night although Emily thought the music was a little too loud. She did enjoy all the students running around the track. She thought it was a game. The money goes towards research. We need to get to that 100ure rate so no more mothers spend Mother’s Day with out their children.

We went to the Leukemia & Lymphoma’s Society’s Team In Training Spring Kick off on Saturday. We were very happy to see Nurse Tina. She was Seth’s PICU nurse for those last couple of days that he was with us. She is an AWESOME nurse. She was so good to him and us. She said she came out today to join Team In Training in honor of Seth. Just think of all the patients she must care for. She is also a mother of 3. I couldn’t even speak. She will participate in the up coming triathlon in September.

Thank you to Jackie Muniz who gave us the medal she won at last October’s Team in Training Century Ride in West Palm Beach.

Our Lady Queen of Peace Catholic Cemetery

The cemetery is looking worse than ever. Since it has been so hot and dry it is so obvious that the sprinklers are not working. The only green out there other than the crab grass is Seth’s little spot in the world. That spot is only green because we water it every other day. We are reconsidering having Seth unearthed and moved to another cemetery. It will be emotionally painful and expensive move. It is painfully clear that Our Lady Queen of Peace Catholic Cemetery is showing no respect or honor to our son or any one else who is buried out in that area. The management stated they would remove anything they feel is an eyesore with out notice. HOWEVER they have ignored the grounds for months. The young girl that died of cancer 2 weeks after Seth, her temporary marker still lies in pieces all over the ground, it has been well over a week. The ground crunches under your feet when you walk because of the dead grass. A few people told us that the problem was “being taking care of”. They said give it two weeks (it is has been more like 6 weeks) and we will see a change…we have…it is all for the worse. These people go to my church. I am not sure if we have been lied to or they just gave us some lip service to get us off the back of their friend that runs the cemetery. I am 100f it was their child or grandchild they would not have put with these conditions like we have had to.


Dad

The Dr told dad the new drug “Iressa” was not working the way they had hoped. He is going back on chemo but a different type. He will go once a week on Tuesdays.
Please continue to pray for my parents.


Be sure to check out Seth's quilt at the link below.
Also be sure to check out our new pictures....and don't forget to sign our guestbook.

Much Peace Prayers Love and HOPE for a cure for all childhood cancers
Scott, Ruthie, Emily and from heaven Seth

Monday, May 5, 2003 4:54 AM CDT

Hello everyone….

I want to share a couple of nice things friends have done for us lately….

First most of you know Genna. She is an amazing 14-year-old who was diagnosed in January of 2002 with Ewings Sarcoma. We met her shortly after Seth was diagnosed. We got to know her and her mother, who at that time was only known as “Genna’s mom” (her name is Rita). Seth became very attached to “Miss Genna”. He always enjoyed her company. He had a special visit to her house in October of 2002. He had a great time. He loved her room and especially her dog Dakota. He got to take Dakota for a walk…..not sure who was walking who since the dog stood taller than Seth. Genna has truly been a blessing to our family. I got an email from her on April 30th, the 5 month anniversary of Seth’s passing. It read as follows.

RUTHIE AND SCOTT,

Well you know how I told you on Valentines Day I released a balloon to Seth, well that night I wrote a poem for him...

A Balloon For A Friend
Tonight I sent a balloon to my special Friend,
the balloon’s journey looked as if it'll never end.
My little friend's name was Seth;
this buddy of mine was the very best.
I am glad to say he was a friend I had,
now I can’t see him and I’m so sad.
As the balloon disappears into the night sky,
I say to myself fly Seth, fly.
Although the balloon is out of sight,
I know it continues its very special flight.
Hey little buddy, Trainman, I miss you,
So Seth Chuga, Chuga, Cho, Cho!

In Loving Memory of my buddy, Seth C. Bunkelmann
(TRAINMAN) I love you Buddy!

Love Genna

This is a note in Seth’s guest book.
Hi Ruthie, Scott, Emily and Seth in heaven,

I have to tell you about something really special that happened at the RCCA pre-school. The graduates were invited to go sing at the Spring Luncheon that the RCCA holds at the Beach Club in Palm Beach. One of my friends attended and told me about the kids singing and asked me why they sang "Seth's been working on the Railroad" and wanted to know if it had any special meaning. I told her Seth's story and she reminded me she was one of the donors that raised money for the Light Up the Night walk in Seth's name. What a small world. I asked the kids about it when I picked them up and they said "Of course we sang the Railroad song with Seth's name in it - that is the right way to sing it!" It sure is!!! His song is being sung - Praise God.
With love and prayers,
The Cabreras - Maurice, Suzanne, Alex and Rachel

The school is so AWESOME!!!! Those teachers are truly “angels among us”. I know some of you are saying “Ruthie, come on it is just a preschool.” IT IS NOT!!! It is not that it is a special “place” it is that it is an exceptional group of very talented caring ladies. A group of ladies that gave us a lot of hope. A group of ladies that gave Seth a lot of love and guidance. I could truly be at peace with him there during the day…even if the report of his behavior was not the best at times. I so wanted to see him in his graduating cap and gown this year getting his diploma. Before Seth got sick I was trying to think of a way to convince Miss Leslie to keep Seth until he was 18.



The Cemetery

I WAS WRONG!!! I admit it. I thought the cemetery wanted nice clay pots…wrong…. just plastic. On Wednesday when I went to water his site/flowers there was a note stuck in the clay pot that I had left the day before. It was a note from the ground’s forman that read…..
“Clay or glass pot are not allowed. Please remove. If anymore are placed here they will be disposed of” Grounds Forman

I went back to the entry of the cemetery and reread the rules and regulation sign…yep sure enough no glass or ceramic vases or pots allowed. The sign also said if any flowers or plants become an “eyesore” they will be removed without notice. I guess “beauty is in the eye of the beholder”. They must feel that anthills, crab grass and weeds are beautiful because they sure have enough of them and they seem to be in no rush to remove it. I replanted Seth’s flowers in a lovely plastic container.

Today while we were there watering I noticed the green grass (that I have been watering) growing up around Seth’s temporary marker, so I pulled up the marker a little in order to push it back down on top of the grass. Ants came out like crazy. In the mean time I saw Scott bending down at another child's grave and shaking his hands. It was “probably” the lawn mowers that destroyed the brass marker. The letters that use to spell the name where all over the place; some of them were even twisted. Scott was trying to fix the name but the ants were biting him so bad he had to stop. He said his hands stung for a while.

Seth’s area is starting to look a little better. Grass is starting to grow….Thank You God for the rain. There is still a lot of crab grass and weeds.

Dad
Not feeling too well these days. He is saying that his right lung hurts. It was his left lung that they originally found the cancer in. He has a DR’s appointment on Tuesday. He is also disappointed about not being able to go back to work. The Dr gave him a letter saying he could return to work. The Cemetery (Queen of Peace) sent him a letter stating due to “economic” reasons they are going to stay with the staff of salesmen that they are ready have. Dad worked on 100ommission. Hmmm I guess people are putting off dying because they can’t afford it. PLEASE keep my dad and mom in your prayers.

Please check in our friends at the links below.
Much Peace Prayers Love and HOPE for a cure for all childhood cancers
Ruthie, Scott, Emily and from heaven Seth

Monday, May 5, 2003 4:51 AM CDT

Hello everyone….

I want to share a couple of nice things friends have done for us lately….

First most of you know Genna. She is an amazing 14-year-old who was diagnosed in January of 2002 with Ewings Sarcoma. We met her shortly after Seth was diagnosed. We got to know her and her mother, who at that time was only known as “Genna’s mom” (her name is Rita). Seth became very attached to “Miss Genna”. He always enjoyed her company. He had a special visit to her house in October of 2002. He had a great time. He loved her room and especially her dog Dakota. He got to take Dakota for a walk…..not sure who was walking who since the dog stood taller than Seth. Genna has truly been a blessing to our family. I got an email from her on April 30th, the 5 month anniversary of Seth’s passing. It read as follows.

RUTHIE AND SCOTT,

Well you know how I told you on Valentines Day I released a balloon to Seth, well that night I wrote a poem for him...

A Balloon For A Friend
Tonight I sent a balloon to my special Friend,
the balloon’s journey looked as if it'll never end.
My little friend's name was Seth;
this buddy of mine was the very best.
I am glad to say he was a friend I had,
now I can’t see him and I’m so sad.
As the balloon disappears into the night sky,
I say to myself fly Seth, fly.
Although the balloon is out of sight,
I know it continues its very special flight.
Hey little buddy, Trainman, I miss you,
So Seth Chuga, Chuga, Cho, Cho!

In Loving Memory of my buddy, Seth C. Bunkelmann
(TRAINMAN) I love you Buddy!

Love Genna

This is a note in Seth’s guest book.
Hi Ruthie, Scott, Emily and Seth in heaven,

I have to tell you about something really special that happened at the RCCA pre-school. The graduates were invited to go sing at the Spring Luncheon that the RCCA holds at the Beach Club in Palm Beach. One of my friends attended and told me about the kids singing and asked me why they sang "Seth's been working on the Railroad" and wanted to know if it had any special meaning. I told her Seth's story and she reminded me she was one of the donors that raised money for the Light Up the Night walk in Seth's name. What a small world. I asked the kids about it when I picked them up and they said "Of course we sang the Railroad song with Seth's name in it - that is the right way to sing it!" It sure is!!! His song is being sung - Praise God.
With love and prayers,
The Cabreras - Maurice, Suzanne, Alex and Rachel

The school is so AWESOME!!!! Those teachers are truly “angels among us”. I know some of you are saying “Ruthie, come on it is just a preschool.” IT IS NOT!!! It is not that it is a special “place” it is that it is an exceptional group of very talented caring ladies. A group of ladies that gave us a lot of hope. A group of ladies that gave Seth a lot of love and guidance. I could truly be at peace with him there during the day…even if the report of his behavior was not the best at times. I so wanted to see him in his graduating cap and gown this year getting his diploma. Before Seth got sick I was trying to think of a way to convince Miss Leslie to keep Seth until he was 18.



The Cemetery

I WAS WRONG!!! I admit it. I thought the cemetery wanted nice clay pots…wrong…. just plastic. On Wednesday when I went to water his site/flowers there was a note stuck in the clay pot that I had left the day before. It was a note from the ground’s forman that read…..
“Clay or glass pot are not allowed. Please remove. If anymore are placed here they will be disposed of” Grounds Forman

I went back to the entry of the cemetery and reread the rules and regulation sign…yep sure enough no glass or ceramic vases or pots allowed. The sign also said if any flowers or plants become an “eyesore” they will be removed without notice. I guess “beauty is in the eye of the beholder”. They must feel that anthills, crab grass and weeds are beautiful because they sure have enough of them and they seem to be in no rush to remove it. I replanted Seth’s flowers in a lovely plastic container.

Today while we were there watering I noticed the green grass (that I have been watering) growing up around Seth’s temporary marker, so I pulled up the marker a little in order to push it back down on top of the grass. Ants came out like crazy. In the mean time I saw Scott bending down at another child's grave and shaking his hands. It was “probably” the lawn mowers that destroyed her brass marker. The letters that use to spell her name where all over the place; some of them were even twisted. Scott was trying to fix her name but the ants were biting him so bad he had to stop. He said his hands stung for a while.

Seth’s area is starting to look a little better. Grass is starting to grow….Thank You God for the rain. There is still a lot of crab grass and weeds.

Dad
Not feeling too well these days. He is saying that his right lung hurts. It was his left lung that they originally found the cancer in. He has a DR’s appointment on Tuesday. He is also disappointed about not being able to go back to work. The Dr gave him a letter saying he could return to work. The Cemetery (Queen of Peace) sent him a letter stating due to “economic” reasons they are going to stay with the staff of salesmen that they are ready have. Dad worked on 100% commission. Hmmm I guess people are putting off dying because they can’t afford it. PLEASE keep my dad and mom in your prayers.

Please check in our friends at the links below.
Much Peace Prayers Love and HOPE for a cure for all childhood cancers
Ruthie, Scott, Emily and from heaven Seth

Monday, May 5, 2003 4:34 AM CDT

Hello everyone….

I want to share a couple of nice things friends have done for us lately….

First most of you know Genna. She is an amazing 14-year-old who was diagnosed in January of 2002 with Ewings Sarcoma. We met her shortly after Seth was diagnosed. We got to know her and her mother, who at that time was only known as “Genna’s mom” (her name is Rita). Seth became very attached to “Miss Genna”. He always enjoyed her company. He had a special visit to her house in October of 2002. He had a great time. He loved her room and especially her dog Dakota. He got to take Dakota for a walk…..not sure who was walking who since the dog stood taller than Seth. Genna has truly been a blessing to our family. I got an email from her on April 30th, the 5 month anniversary of Seth’s passing. It read as follows.

RUTHIE AND SCOTT,

Well you know how I told you on Valentines Day I released a balloon to Seth, well that night I wrote a poem for him...

A Balloon For A Friend
Tonight I sent a balloon to my special Friend,
the balloon’s journey looked as if it'll never end.
My little friend's name was Seth;
this buddy of mine was the very best.
I am glad to say he was a friend I had,
now I can’t see him and I’m so sad.
As the balloon disappears into the night sky,
I say to myself fly Seth, fly.
Although the balloon is out of sight,
I know it continues its very special flight.
Hey little buddy, Trainman, I miss you,
So Seth Chuga, Chuga, Cho, Cho!

In Loving Memory of my buddy, Seth C. Bunkelmann
(TRAINMAN) I love you Buddy!

Love Genna

This is a note in Seth’s guest book.
Hi Ruthie, Scott, Emily and Seth in heaven,

I have to tell you about something really special that happened at the RCCA pre-school. The graduates were invited to go sing at the Spring Luncheon that the RCCA holds at the Beach Club in Palm Beach. One of my friends attended and told me about the kids singing and asked me why they sang "Seth's been working on the Railroad" and wanted to know if it had any special meaning. I told her Seth's story and she reminded me she was one of the donors that raised money for the Light Up the Night walk in Seth's name. What a small world. I asked the kids about it when I picked them up and they said "Of course we sang the Railroad song with Seth's name in it - that is the right way to sing it!" It sure is!!! His song is being sung - Praise God.
With love and prayers,
The Cabreras - Maurice, Suzanne, Alex and Rachel

The school is so AWESOME!!!! Those teachers are truly “angels among us”. I know some of you are saying “Ruthie, come on it is just a preschool.” IT IS NOT!!! It is not that it is a special “place” it is that it is an exceptional group of very talented caring ladies. A group of ladies that gave us a lot of hope. A group of ladies that gave Seth a lot of love and guidance. I could truly be at peace with him there during the day…even if the report of his behavior was not the best at times. I so wanted to see him in his graduating cap and gown this year getting his diploma. Before Seth got sick I was trying to think of a way to convince Miss Leslie to keep Seth until he was 18.



The Cemetery

I WAS WRONG!!! I admit it. I thought the cemetery wanted nice clay pots…wrong…. just plastic. On Wednesday when I went to water his site/flowers there was a note stuck in the clay pot that I had left the day before. It was a note from the ground’s forman that read…..
“Clay or glass pot are not allowed. Please remove. If anymore are placed here they will be disposed of” Grounds Forman

I went back to the entry of the cemetery and reread the rules and regulation sign…yep sure enough no glass or ceramic vases or pots allowed. The sign also said if any flowers or plants become an “eyesore” they will be removed without notice. I guess “beauty is in the eye of the beholder”. They must feel that anthills, crab grass and weeds are beautiful because they sure have enough of them and they seem to be in no rush to remove it. I replanted Seth’s flowers in a lovely plastic container.

Today while we were there watering I noticed the green grass (that I have been watering) growing up around Seth’s temporary marker, so I pulled up the marker a little in order to push it back down on top of the grass. Ants came out like crazy. In the mean time I saw Scott bending down at Zenida’s (she died shortly after Seth of a brain tumor) grave and shaking his hands. It was “probably” the lawn mowers that destroyed her brass marker. The letters that use to spell her name where all over the place; some of them were even twisted. Scott was trying to fix her name but the ants were biting him so bad he had to stop…sorry Zenida we tried. He said his hands stung for a while.

Seth’s area is starting to look a little better. Grass is starting to grow….Thank You God for the rain. There is still a lot of crab grass and weeds.

Dad
Not feeling too well these days. He is saying that his right lung hurts. It was his left lung that they originally found the cancer in. He has a DR’s appointment on Tuesday. He is also disappointed about not being able to go back to work. The Dr gave him a letter saying he could return to work. The Cemetery (Queen of Peace) sent him a letter stating due to “economic” reasons they are going to stay with the staff of salesmen that they are ready have. Dad worked on 100% commission. Hmmm I guess people are putting off dying because they can’t afford it. PLEASE keep my dad and mom in your prayers.

Please check in our friends at the links below.
Much Peace Prayers Love and HOPE for a cure for all childhood cancers
Ruthie, Scott, Emily and from heaven Seth

Sunday, May 4, 2003 8:11 PM CDT

Hello everyone….

I want to share a couple of nice things friends have done for us lately….

First most of you know Genna. She is an amazing 14-year-old who was diagnosed in January of 2002 with Ewings Sarcoma. We met her shortly after Seth was diagnosed. We got to know her and her mother, who at that time was only known as “Genna’s mom” (her name is Rita). Seth became very attached to “Miss Genna”. He always enjoyed her company. He had a special visit to her house in October of 2002. He had a great time. He loved her room and especially her dog Dakota. He got to take Dakota for a walk…..not sure who was walking who since the dog stood taller than Seth. Genna has truly been a blessing to our family. I got an email from her on April 30th, the 5 month anniversary of Seth’s passing. It read as follows.

RUTHIE AND SCOTT,

Well you know how I told you on Valentines Day I released a balloon to Seth, well that night I wrote a poem for him...

A Balloon For A Friend
Tonight I sent a balloon to my special Friend,
the balloon’s journey looked as if it'll never end.
My little friend's name was Seth;
this buddy of mine was the very best.
I am glad to say he was a friend I had,
now I can’t see him and I’m so sad.
As the balloon disappears into the night sky,
I say to myself fly Seth, fly.
Although the balloon is out of sight,
I know it continues its very special flight.
Hey little buddy, Trainman, I miss you,
So Seth Chuga, Chuga, Cho, Cho!

In Loving Memory of my buddy, Seth C. Bunkelmann
(TRAINMAN) I love you Buddy!

Love Genna

This is a note in Seth’s guest book.
Hi Ruthie, Scott, Emily and Seth in heaven,

I have to tell you about something really special that happened at the RCCA pre-school. The graduates were invited to go sing at the Spring Luncheon that the RCCA holds at the Beach Club in Palm Beach. One of my friends attended and told me about the kids singing and asked me why they sang "Seth's been working on the Railroad" and wanted to know if it had any special meaning. I told her Seth's story and she reminded me she was one of the donors that raised money for the Light Up the Night walk in Seth's name. What a small world. I asked the kids about it when I picked them up and they said "Of course we sang the Railroad song with Seth's name in it - that is the right way to sing it!" It sure is!!! His song is being sung - Praise God.
With love and prayers,
The Cabreras - Maurice, Suzanne, Alex and Rachel

The school is so AWESOME!!!! Those teachers are truly “angels among us”. I know some of you are saying “Ruthie, come on it is just a preschool.” IT IS NOT!!! It is not that it is a special “place” it is that it is an exceptional group of very talented caring ladies. A group of ladies that gave us a lot of hope. A group of ladies that gave Seth a lot of love and guidance. I could truly be at peace with him there during the day…even if the report of his behavior was not the best at times. I so wanted to see him in his graduating cap and gown this year getting his diploma. Before Seth got sick I was trying to think of a way to convince Miss Leslie to keep Seth until he was 18.



The Cemetery

I WAS WRONG!!! I admit it. I thought the cemetery wanted nice clay pots…wrong…. just plastic. On Wednesday when I went to water his site/flowers there was a note stuck in the clay pot that I had left the day before. It was a note from the ground’s forman that read…..
“Clay or glass pot are not allowed. Please remove. If anymore are placed here they will be disposed of” Grounds Forman

I went back to the entry of the cemetery and reread the rules and regulation sign…yep sure enough no glass or ceramic vases or pots allowed. The sign also said if any flowers or plants become an “eyesore” they will be removed without notice. I guess “beauty is in the eye of the beholder”. They must feel that anthills, crab grass and weeds are beautiful because they sure have enough of them and they seem to be in no rush to remove it. I replanted Seth’s flowers in a lovely plastic container.

Today while we were there watering I noticed the green grass (that I have been watering) growing up around Seth’s temporary marker, so I pulled up the marker a little in order to push it back down on top of the grass. Ants came out like crazy. In the mean time I saw Scott bending down at Zenida’s (she died shortly after Seth of a brain tumor) grave and shaking his hands. It was “probably” the lawn mowers that destroyed her brass marker. The letters that use to spell her name where all over the place; some of them were even twisted. Scott was trying to fix her name but the ants were biting him so bad he had to stop…sorry Zenida we tried. He said his hands stung for a while.

Seth’s area is starting to look a little better. Grass is starting to grow….Thank You God for the rain. There is still a lot of crab grass and weeds.

Dad
Not feeling too well these days. He is saying that his right lung hurts. It was his left lung that they originally found the cancer in. He has a DR’s appointment on Tuesday. He is also disappointed about not being able to go back to work. The Dr gave him a letter saying he could return to work. The Cemetery (Queen of Peace) sent him a letter stating due to “economic” reasons they are going to stay with the staff of salesmen that they are ready have. Dad worked on 100ommission. Hmmm I guess people are putting off dying because they can’t afford it. PLEASE keep my dad and mom in your prayers.

Please check in our friends at the links below.
Much Peace Prayers Love and HOPE for a cure for all childhood cancers
Ruthie, Scott, Emily and from heaven Seth

Wednesday, April 30, 2003 7:14 PM CDT

It has been 5 months since our little Seth left us. The “30th” of every month is a day we dread. This one has been particularly hard……..not sure why but it has made for a very difficult day. I guess in part today was the first time I was at work on a “30th”. Not wanting to be there but knowing sooner or later it would have to happen. I spent some time up with the ladies in POST…having a good cry. Terri met me at the door, took one look at me and gave me a big hug…..she knew. I sat and chatted with Barbara and Sandy until I had my composure and then headed down to my office. I am sure more people than I realize were aware of what today was…. although I felt I was in my own private hell. I spent a good part of the day in tears thinking about Seth. Scott and I talked several times through out the day ….trying to hold each up just to get through the day. I did get the chance to talk to nurse Karen and Tracy….thank you both for listening. I thought a lot about Mother’s Day coming up….a day I want to totally avoid. I think this one will be more painful than Christmas. I am still a mother of two I just can’t “mother” one of them. The thought of never hearing his sweet little voice or holding him my arms is so overwhelming today. Like the song says “Time can bring you down,
time can bend your knees, time can break your heart and have you begging please…begging please…” Eric Clapton. He knows…he wrote this song after his 4-year-old son died.

We have made so many new wonderful friends on this journey beginning when Seth was first diagnosed…although it is a journey we did not choose. We spent Sunday night at Juno Beach with the Charlton family in honor of their son Robert who would have turned 12 on Monday April 28th. (For those of you that don’t know Robert passed away about 2 weeks before Seth on 11/17/02) It was a moving experience to be there. We wrote a note to Robert, sealed it in a bottle and Scott tossed it out in to the ocean. The Charlton family had thrown their bottles earlier from the pier. Scott and Jeff (Robert’s father) stood side by side at the edge of the water looking out and I am sure talking about their boys that they lost and loved so much. Jessica the oldest of the Charlton children took Emily by the hand and walked in to the water so Emily could get her feet wet. Robert’s younger brother Matthew who is 6 years old also kept a very watchful eye on Emily…if she walked off to far he would bring her back. The night was over cast which made it nice and cool. It was such an honor to be there with the Charlton family and remembering Robert.

Please remember our friend Jalen who although is breathing on his own is still in need of prayers. Also our sweet little friend Jessica who has been in the hospital for the last couple of days with a fever of an unknown source. Jessica also has Leukemia.

Just a short update. Please check out our photos, sign our guest book and visit our friends at the links below.


Much Peace, Prayers, Love and HOPE for a cure for all childhood cancers
Ruthie, Scott, Emily and from heaven Seth

Sunday, April 27, 2003 5:24 PM CDT

Hello everyone……….


The grass at the cemetery is starting to look greener. I think it is the “act of God” with the rain that is improving the conditions. We had talked about “unearthing” Seth’s grave and moving him to another cemetery. The cost would be huge. However the more we thought about it our sweet child will be there forever and ever. The folks who are causing us such heartache will only be working at the cemetery such a short time compared to that. Since we are not the only ones with complaints we are making sure anyone who needs the name and addresses of the board members gets that information. PLEASE if you need the information let us know. Seth’s godparents have also been helpful in giving us insight to the problem out there (their opinion). They are not afraid to speak up which has been a great source of comfort to us…..since others are afraid to get involved. They said the entire place should look like a golf course. I guess Seth got buried in the “sand trap”. My mom put some yellow and white flowers in a clay pot with at little plastic bunny. She placed them there on Easter Sunday . Those flowers were not taken that one day however when I was there this past Friday someone actually took the flowers out of the clay pot and put them in a cheap plastic container (the cemetery has rules on what type of containers they allow) and took the bunny as well. We are talking about a major low form of life here folks. We know that it had to be a 2-legged breathing being although anyone who would steal from a grave let alone a 5-year-old child does not deserve to be referred to as a human being. I repotted the flowers in a clay pot and wrote Seth’s name and messages to him all over it. We will see if this pot grows feet and walks.

Some Palm Beach Gardens High School students were washing cars today at a local gas station to raise money for American Cancer Society “Relay for Life”. We had my dad’s van “the Wally Wagon” washed by them. This is significant in the fact that Seth called that the “Magic School Bus”. He loved that show and the van. So it was rather fitting that the students washed that vehicle. We have included some of the pictures from the event. The “Relay for Life” that students are participating in is scheduled for May 9th and 10th. If you are interested please call 561-744-2275 (Tequesta’s American Cancer Society).

If you don’t get Sunday’s paper…RUN out and get one. There is a great article on the Pediatric Oncology Support Team in the local section of the Palm Beach Post. There is a wonderful picture of our friend Timmy Lawton on the front page. We got to know Timmy and his mom Kathy before Seth died. The article was nice but there are NO words that could truly do justice to describe what those 4 ladies (we call them the “angels among us”) do for all the families with children with cancer. They were such a blessing and a source of comfort to our family from day one. They continue to help us even now almost 5 months after Seth’s death. They are going to get a support group going for parents of children who lost their battle with that dreaded monster called cancer. They understand so much about us and help us with what ever we need. They truly coined the phrase “above and beyond the call of duty”…but of course that is what angels do!! Right?!

We will be leaving for Camp Sunshine in a couple of weeks. We go with mixed emotions. We are glad to be going if it will help us….but the reason we are going sucks! Seth never got to go to the camp to have fun like the other kids. He never got to go to Boggy Creek camp. He never got his wish through “Make a Wish”. We were going to go on Amtrak to visit Seth’s grandparents in Arizona. This way Seth could eat, sleep and play on a train. He would have loved it.

There was a very interesting article on Zachary Finestone in The South Florida Business Journal

From the April 11, 2003 print edition.
Study could fuel suits claiming nuclear plants cause cancer
Stephen Van Drake

Please go to his web site and the journal dated April 25th. His site is ….

http://www.caringbridge.org/fl/zacharyfinestone

We believe that cancer is man made…in a sense with all the crap that we have put in the air, the ground and the waters. Some people say we need to find someone to blame for Seth getting cancer. We don’t blame God. We don’t blame the Dr for not being able to beat this vicious disease but rather we are taking a hard look at what we are doing to our environment. Scott and I were always amazed at the number of people who work at St Mary’s that smoke right out side the hospital……….”hello folks could you be closer to reasons not to smoke”. Not to mention what 2nd hand smoke does to others. I am not saying someone smoking caused Seth’s cancer…we will never know that but we do know that smoking causes cancer. If you want evidence go visit my father….my mother would welcome your visit. (To all my friends at St Mary’s Child Development Center……I hope you are reading this and you know you are……..if you won’t stop smoking for Seth do it for your own kids)!!!!!! I know smoking is an addiction however Scott and I are addicted to saving other kids and their families from going through the pure hell we have been through.

Thank you to all of you who have been praying (or whatever you believe in) for Jalen. Please continue to do so and visit his web site (listed below).

Check out our pictures and the sites below.

Much Peace, Prayers, Love and Hope for a cure for all childhood cancers
Ruthie, Scott, Emily and from heaven Seth

Sunday, April 27, 2003 5:20 PM CDT

Hello everyone……….


The grass at the cemetery is starting to look greener. I think it is the “act of God” with the rain that is improving the conditions. We had talked about “unearthing” Seth’s grave and moving him to another cemetery. The cost would be huge. However the more we thought about it our sweet child will be there forever and ever. The folks who are causing us such heartache will only be working at the cemetery such a short time compared to that. Since we are not the only ones with complaints we are making sure anyone who needs the name and addresses of the board members gets that information. PLEASE if you need the information let us know. Seth’s godparents have also been helpful in giving us insight to the problem out there (their opinion). They are not afraid to speak up which has been a great source of comfort to us…..since others are afraid to get involved. They said the entire place should look like a golf course. I guess Seth got buried in the “sand trap”. My mom put some yellow and white flowers in a clay pot with at little plastic bunny. She placed them there on Easter Sunday . Those flowers were not taken that one day however when I was there this past Friday someone actually took the flowers out of the clay pot and put them in a cheap plastic container (the cemetery has rules on what type of containers they allow) and took the bunny as well. We are talking about a major low form of life here folks. We know that it had to be a 2-legged breathing being although anyone who would steal from a grave let alone a 5-year-old child does not deserve to be referred to as a human being. I repotted the flowers in a clay pot and wrote Seth’s name and messages to him all over it. We will see if this pot grows feet and walks.

Some Palm Beach Gardens High School students were washing cars today at a local gas station to raise money for American Cancer Society “Relay for Life”. We had my dad’s van “the Wally Wagon” washed by them. This is significant in the fact that Seth called that the “Magic School Bus”. He loved that show and the van. So it was rather fitting that the students washed that vehicle. We have included some of the pictures from the event. The “Relay for Life” that students are participating in is scheduled for May 9th and 10th. If you are interested please call 561-744-2275 (Tequesta’s American Cancer Society).

If you don’t get Sunday’s paper…RUN out and get one. There is a great article on the Pediatric Oncology Support Team in the local section of the Palm Beach Post. There is a wonderful picture of our friend Timmy Lawton on the front page. We got to know Timmy and his mom Kathy before Seth died. The article was nice but there are NO words that could truly do justice to describe what those 4 ladies (we call them the “angels among us”) do for all the families with children with cancer. They were such a blessing and a source of comfort to our family from day one. They continue to help us even now almost 5 months after Seth’s death. They are going to get a support group going for parents of children who lost their battle with that dreaded monster called cancer. They understand so much about us and help us with what ever we need. They truly coined the phrase “above and beyond the call of duty”…but of course that is what angels do!! Right?!

We will be leaving for Camp Sunshine in a couple of weeks. We go with mixed emotions. We are glad to be going if it will help us….but the reason we are going sucks! Seth never got to go to the camp to have fun like the other kids. He never got to go to Boggy Creek camp. He never got his wish through “Make a Wish”. We were going to go on Amtrak to visit Seth’s grandparents in Arizona. This way Seth could eat, sleep and play on a train. He would have loved it.

There was a very interesting article on Zachary Finestone in The South Florida Business Journal

From the April 11, 2003 print edition.
Study could fuel suits claiming nuclear plants cause cancer
Stephen Van Drake

Please go to his web site and the journal dated April 25th. His site is ….

http://www.caringbrige.org/fl/zacharyfinestone

We believe that cancer is man made…in a sense with all the crap that we have put in the air, the ground and the waters. Some people say we need to find someone to blame for Seth getting cancer. We don’t blame God. We don’t blame the Dr for not being able to beat this vicious disease but rather we are taking a hard look at what we are doing to our environment. Scott and I were always amazed at the number of people who work at St Mary’s that smoke right out side the hospital……….”hello folks could you be closer to reasons not to smoke”. Not to mention what 2nd hand smoke does to others. I am not saying someone smoking caused Seth’s cancer…we will never know that but we do know that smoking causes cancer. If you want evidence go visit my father….my mother would welcome your visit. (To all my friends at St Mary’s Child Development Center……I hope you are reading this and you know you are……..if you won’t stop smoking for Seth do it for your own kids)!!!!!! I know smoking is an addiction however Scott and I are addicted to saving other kids and their families from going through the pure hell we have been through.

Thank you to all of you who have been praying (or whatever you believe in) for Jalen. Please continue to do so and visit his web site (listed below).

Check out our pictures and the sites below.

Much Peace, Prayers, Love and Hope for a cure for all childhood cancers
Ruthie, Scott, Emily and from heaven Seth

Sunday, April 27, 2003 4:46 PM CDT

Hello everyone……….


The grass at the cemetery is starting to look greener. I think it is the “act of God” with the rain that is improving the conditions. We had talked about “unearthing” Seth’s grave and moving him to another cemetery. The cost would be huge. However the more we thought about it our sweet child will be there forever and ever. The folks who are causing us such heartache will only be working at the cemetery such a short time compared to that. Since we are not the only ones with complaints we are making sure anyone who needs the name and addresses of the board members gets that information. PLEASE if you need the information let us know. Seth’s godparents have also been helpful in giving us insight to the problem out there (their opinion). They are not afraid to speak up which has been a great source of comfort to us…..since others are afraid to get involved. They said the entire place should look like a golf course. I guess Seth got buried in the “sand trap”. My mom put some yellow and white flowers in a clay pot with at little plastic bunny. She placed them there on Easter Sunday . Those flowers were not taken that one day however when I was there this past Friday someone actually took the flowers out of the clay pot and put them in a cheap plastic container (the cemetery has rules on what type of containers they allow) and took the bunny as well. We are talking about a major low form of life here folks. We know that it had to be a 2-legged breathing being although anyone who would steal from a grave let alone a 5-year-old child does not deserve to be referred to as a human being. I repotted the flowers in a clay pot and wrote Seth’s name and messages to him all over it. We will see if this pot grows feet and walks.

Some Palm Beach Gardens High School students were washing cars today at a local gas station to raise money for American Cancer Society “Relay for Life”. We had my dad’s van “the Wally Wagon” washed by them. This is significant in the fact that Seth called that the “Magic School Bus”. He loved that show and the van. So it was rather fitting that the students washed that vehicle. We have included some of the pictures from the event. The “Relay for Life” that students are participating in is scheduled for May 9th and 10th. If you are interested please call 561-744-2275 (Tequesta’s American Cancer Society).

If you don’t get Sunday’s paper…RUN out and get one. There is a great article on the Pediatric Oncology Support Team in the local section of the Palm Beach Post. There is a wonderful picture of our friend Timmy Lawton on the front page. We got to know Timmy and his mom Kathy before Seth died. The article was nice but there are NO words that could truly do justice to describe what those 4 ladies (we call them the “angels among us”) do for all the families with children with cancer. They were such a blessing and a source of comfort to our family from day one. They continue to help us even now almost 5 months after Seth’s death. They are going to get a support group going for parents of children who lost their battle with that dreaded monster called cancer. They understand so much about us and help us with what ever we need. They truly coined the phrase “above and beyond the call of duty”…but of course that is what angels do!! Right?!

We will be leaving for Camp Sunshine in a couple of weeks. We go with mixed emotions. We are glad to be going if it will help us….but the reason we are going sucks! Seth never got to go to the camp to have fun like the other kids. He never got to go to Boggy Creek camp. He never got his wish through “Make a Wish”. We were going to go on Amtrak to visit Seth’s grandparents in Arizona. This way Seth could eat, sleep and play on a train. He would have loved it.

There was a very interesting article on Zachary Finestone in The South Florida Business Journal

From the April 11, 2003 print edition.
Study could fuel suits claiming nuclear plants cause cancer
Stephen Van Drake

Please go to his web site and the journal dated April 25th. His site is ….

www.caringbrige.org/fl/zacharyfinestone

We believe that cancer is man made…in a sense with all the crap that we have put in the air, the ground and the waters. Some people say we need to find someone to blame for Seth getting cancer. We don’t blame God. We don’t blame the Dr for not being able to beat this vicious disease but rather we are taking a hard look at we are doing to our environment. Scott and I were always amazed at the number of people who work at St Mary’s that smoke right out side the hospital……….”hello folks could you be closer to reasons not to smoke”. Not to mention what 2nd hand smoke does to others. I am not saying someone smoking caused Seth’s cancer…we will never know that but we do know that smoking causes cancer. If you want evidence go visit my father….my mother would welcome your visit. (To all my friends at St Mary’s Child Development Center……I hope you are reading this and you know you are……..if you won’t stop smoking for Seth do it for your own kids)!!!!!! I know smoking is an addiction however Scott and I are addicted to saving other kids and their families from going through the pure hell we have been through.

Thank you to all of you who have been praying (or whatever you believe in) for Jalen. Please continue to do so and visit his web site (listed below).

Please continue to keep my parents in your prayers.

Check out our pictures and the sites below.

Much Peace, Prayers, Love and Hope for a cure for all childhood cancers
Ruthie, Scott, Emily and from heaven Seth

Monday, April 21, 2003 10:16 PM CDT

Good day everyone….

On Saturday we went to the Leukemia & Lymphoma “Team in Training” marathon send off. It was held at Loggerhead Park. I was feeling down about Easter, our anniversary and not having Seth here with us. Scott hung out with the wonderful “Team in Training” folks and Emily and I hung out at the playground. Those people are so amazing and dedicated.

Later that night we took Emily to Grandma and Papa’s house so she could color eggs while we went out to dinner. We had a nice time. We bought two Easter balloons from Publix to take out to the cemetery on Easter for Seth.

Sunday morning I could not handle the crowd at church. I had Scott drive through the parking lot and go straight out to the cemetery. There are 5 children that were Dr. Gowda’s patients that are buried out there. One mom got all the kid’s gravesite flowers several weeks ago. Seth got pretty pink flowers. I think this same mom put plastic Easter eggs in each of the kid’s potted flowers. She filled them with dirt so they would not blow away. We also bought an Easter bunny shaped sign (it was on a metal stick about 2 feet long). The little bunny could not have been more than 8 inches high. We stuck that in Seth’s potted flowers. I had also picked up some butterflies from the craft store and attached them to wire. I put one in Seth’s potted flowers to make it look like it was hovering right above the flowers…a small butterfly alittle bigger than a quarter. I put some bigger butterflies in two of the other children’s flowers because I knew one of them loved butterflies. Seth’s Aunt Dori, Uncle Todd and cousin “baby Shayn” also brought some flowers to his gravesite later that day. We wrote messages to Seth on the balloons and watched them float away. His little piece of land is looking better…. greener. He had Easter eggs, Easter flowers, a bunny sign and a pretty butterfly. THEN someone who is the lowest form of life stripped his little gravesite clean. When I went to water on Monday everything was gone…the bunny sign, the plastic eggs, the butterfly and the flowers. I immediately checked all the other kid’s gravesites and all their things were still there. In fact there were a number of gravesites with plastic eggs and other Easter decorations sitting on the ground around the marker. Someome INTENTIONALLY took everything from our little boy. Someone who is cruel and hurtful.
I am so hurt and angry. There is no other explanation of this cruel and insensitive act other than someone trying to hurt us. It was not just one item taken it was everything! We have our suspicions…. I think someone does not like us making so much noise about the problems out there. I am so upset about this. I knew it is a few little items but they took it from the gravesite of our sweet little boy that we lost so recently. We feel violated.

Today is Monday April 21, Seth would be turning 6 years old 2 months from today.

Hearts and Hope invited us to a tree-planting memorial that was held tonight. We meet with numerous other families who have attended Hearts and Hope out at Wellington Village Park. Each family planted a small oak tree (there were 100 trees) in memory of their loved one. Each family put a little sign on the tree stating whom the tree was planted in memory of. It is our understanding that they are ordering permanent signs to put with the trees. The park is quite a drive from our house, and once you get to the park the trees are quite a walk from the parking lot. But we will still venture out there from time to time to see how Seth’s tree is doing.

Dad
He is about the same. He has good days and not so good days. His weight is down. Please keep him and my mom in your prayers.


Check out the new photos

Thank you for all your kind words and prayers
Much Peace Prayers and Hope for a cure for all childhood cancers
Ruthie, Scott, Emily and from heaven Seth

Monday, April 21, 2003 9:18 PM CDT

Good day everyone….

On Saturday we went to the Leukemia & Lymphoma “Team in Training” marathon send off. It was held at Loggerhead Park. I was feeling down about Easter, our anniversary and not having Seth here with us. Scott hung out with the wonderful “Team in Training” folks and Emily and I hung out at the playground. Those people are so amazing and dedicated.

Later that night we took Emily to Grandma and Papa’s house so she could color eggs while we went out to dinner. We had a nice time. We bought two Easter balloons from Publix to take out to the cemetery on Easter for Seth.

Sunday morning I could not handle the crowd at church. I had Scott drive through the parking lot and go straight out to the cemetery. There are 5 children that were Dr. Gowda’s patients that are buried out there. One mom got all the kid’s gravesite flowers several weeks ago. Seth got pretty pink flowers. I think this same mom put plastic Easter eggs in each of the kid’s potted flowers. She filled them with dirt so they would not blow away. We also bought an Easter bunny shaped sign (it was on a metal stick about 2 feet long). The little bunny could not have been more than 8 inches high. We stuck that in Seth’s potted flowers. I had also picked up some butterflies from the craft store and attached them to wire. I put one in Seth’s potted flowers to make it look like it was hovering right above the flowers…a small butterfly alittle bigger than a quarter. I put some bigger butterflies in two of the other children’s flowers because I knew one of them loved butterflies. Seth’s Aunt Dori, Uncle Todd and cousin “baby Shayn” also brought some flowers to his gravesite later that day. We wrote messages to Seth on the balloons and watched them float away. His little piece of land is looking better…. greener. He had Easter eggs, Easter flowers, a bunny sign and a pretty butterfly. THEN someone who is the lowest form of life stripped his little gravesite clean. When I went to water on Monday everything was gone…the bunny sign, the plastic eggs, the butterfly and the flowers. I immediately checked all the other kid’s gravesites and all their things were still there. In fact there were a number of gravesites with plastic eggs and other Easter decorations sitting on the ground around the marker. Someome INENTIONALLY took everything from our little boy. Someone who is cruel and hurtful.
I am so hurt and angry. There is no other explanation of this cruel and insensitive act other than someone trying to hurt us. It was not just one item taken it was everything! We have our suspicions…. I think someone does not like us making so much noise about the problems out there. I am so upset about this. I knew it is a few little items but they took it from the gravesite of our sweet little boy that we lost so recently. We feel violated.

Today is Monday April 21, Seth would be turning 6 years old 2 months from today.

Hearts and Hope invited us to a tree-planting memorial that was held tonight. We meet with numerous other families who have attended Hearts and Hope out at Wellington Village Park. Each family planted a small oak tree (there were 100 trees) in memory of their loved one. Each family put a little sign on the tree stating whom the tree was planted in memory of. It is our understanding that they are ordering permanent signs to put with the trees. The park is quite a drive from our house, and once you get to the park the trees are quite a walk from the parking lot. But we will still venture out there from time to time to see how Seth’s tree is doing.

Dad
He is about the same. He has good days and not so good days. His weight is down. Please keep him and my mom in your prayers.


Check out the new photos

Thank you for all your kind words and prayers
Much Peace Prayers and Hope for a cure for all childhood cancers
Ruthie, Scott, Emily and from heaven Seth

Monday, April 21, 2003 8:56 PM CDT

Good day everyone….

On Saturday we went to the Leukemia & Lymphoma “Team in Training” marathon send off. It was held at Loggerhead Park. I was feeling down about Easter, our anniversary and not having Seth here with us. Scott hung out with the wonderful “Team in Training” folks and Emily and I hung out at the playground. Those people are so amazing and dedicated.

Later that night we took Emily to Grandma and Papa’s house so she could color eggs while we went out to dinner. We had a nice time. We bought two Easter balloons from Publix to take out to the cemetery on Easter for Seth.

Sunday morning I could not handle the crowd at church. I had Scott drive through the parking lot and go straight out to the cemetery. There are 5 children that were Dr. Gowda’s patients that are buried out there. One mom got all the kid’s gravesite flowers several weeks ago. Seth got pretty pink flowers. I think this same mom put plastic Easter eggs in each of the kid’s potted flowers. She filled them with dirt so they would not blow away. We also bought an Easter bunny shaped sign (it was on a metal stick about 2 feet long). The little bunny could not have been more than 8 inches high. We stuck that in Seth’s potted flowers. I had also picked up some butterflies from the craft store and attached them to wire. I put one in Seth’s potted flowers to make it look like it was hovering right above the flowers…a small butterfly alittle bigger than a quarter. I put some bigger butterflies in two of the other children’s flowers because I knew one of them loved butterflies. Seth’s Aunt Dori, Uncle Todd and cousin “baby Shayn” also brought some flowers to his gravesite later that day. We wrote messages to Seth on the balloons and watched them float away. His little piece of land is looking better…. greener. He had Easter eggs, Easter flowers, a bunny sign and a pretty butterfly. THEN someone who is the lowest form of life stripped his little gravesite clean. When I went to water on Monday everything was gone…the bunny sign, the plastic eggs, the butterfly and the flowers. I immediately checked all the other kid’s gravesites and all their things were still there. In fact there were a number of gravesites with plastic eggs and other Easter decorations sitting on the ground around the marker. Someome INENTIONALLY took everything from our little boy. Someone who is cruel and hurtful.
I am so hurt and angry. There is no other explanation of this cruel and insensitive act other than someone trying to hurt us. It was not just one item taken it was everything! We have our suspicions…. I think someone does not like us making so much noise about the problems out there. I am so upset about this. I knew it is a few little items but they took it from the gravesite of our sweet little boy that we lost so recently. We feel violated.

Today is Monday April 21, Seth would be turning 6 years old 2 months from today.

Hearts and Hope invited us to a tree-planting memorial that was held tonight. We meet with numerous other families who have attended Hearts and Hope out at Wellington Village Park. Each family planted a small oak tree (there were 100 trees) in memory of their loved one. Each family put a little sign on the tree stating whom the tree was planted in memory of. It is our understanding that they are ordering permanent signs to put with the trees. The park is quite a drive from our house, and once you get to the park the trees are quite a walk from the parking lot. But we will still venture out there from time to time to see how Seth’s tree is doing.

Dad
He is about the same. He has good days and not so good days. His weight is down. Please keep him and my mom in your prayers.


Thank you for all your kind words and prayers
Much Peace Prayers and Hope for a cure for all childhood cancers
Ruthie, Scott, Emily and from heaven Seth

Friday, April 18, 2003 8:17 PM CDT

Happy Easter to all of you….


Holidays are very different for us now. They don’t hold the same excitement that they use to. It is so hard, no no….let us say that it is IMPOSSIBLE to put in to words the loss of Seth in our lives and how it not only changes us but how WE interact with the world around us. I know there are people who don’t agree with the way we are dealing with Seth’s passing. Those people don’t understand what it takes just to get up in the morning and to continue to breathe. I think back to an email that Seth’s “best friend” Barbara sent to us. She wrote…“No one does it well. No one. Grieving is not about doing it well. It is about having your heart disassembled and rebuilt from the inside. It is about questioning everything you believe in and creating meaning. It is PAINFUL! It is HARD! It is suppose to be that way. There is no doing it well or right. There is only doing it! And just by breathing and existing you are doing it. “ She also said grieving is completely functional…a necessary part of life and honoring the love we have for each other.
She added we do need other people “you need them to listen and to offer you compassion”.

I am going to put this quote in again. I have it hanging over my desk at work. I read it everyday. It gives me strength. It is from a book called Lessons by Susan Abbott. She lost her son to Leukemia.

“It’s been a time of re-examination of the very roots of existence and the very basics of belief - - a time of questioning, of evaluating, of learning.
And the learning is perhaps my most important tool,
my own personal yardstick of comparison of where I’ve been and where I am,
of figuring out just where this roller coaster of grief is taking me.
And this is what I have discovered.
I have learned that I am much stronger that I thought,
that I can survive against the most devastating blow
a person can sustain and,
though surviving is not the same as living, it is more than I expected.
I have withstood a living hell; I have walked through fire,
I have endured that which is beyond endurance
and I have kept on going.
And though sometimes one step forward means two steps backward,
I know I will keep on going.
For there is no hell, there is no fire---
there is nothing that could come any closer to destroying me
Than the loss of my son.”

So for those of you who don’t like the way we are handling it …tough!


Sunday is Easter and it is also our seven-year wedding anniversary. I am so glad and thankful we have each other. I could not even imagine going through this with out each other. We plan on taking Emily to her grandparents’ house Saturday night so she can color eggs with grandma. We will probably go out to dinner to celebrate our anniversary. We will also make sure the Easter Bunny is ready for the “wild woman” on Easter morning. Seth was always a blast to buy for. He was always so easy to please. I still find myself looking for things for him. I see something to do with a train and think how much he would have enjoyed it. He got his first Thomas the Train four years ago on Easter just before he turned two years old. He always got so jazzed about holidays especially if gifts were involved. We loved to buy him trains. He loved life!!

Thank you to all who responded to my emails and prayed for Jalen. Thank you to those who left a message on his website. He is still in PICU at this writing but according to Jeanette he is doing a bit better. Please continue to pray for them.

I was very excited to hear that Seth’s bestfriend Trent from preschool has a younger brother named Cameron who will be in Emily’s class at RCCA. Trent’s mother Karen is a wonderful mom and we look so forward to seeing her on a regular basis again. Seth use to get so excited when Trent would arrive at school. He would give Trent such a hug.
It is going to be hard to go back to RCCA in one sense…know that Seth should have started kindergarten this year. He made such wonderful progress when he was there. The teachers there are truly “angels among us”.



Dad

Not much new to report. He needs to gain weight. He thinks if he can get back to work that he would feel better. I am sure it has a lot to do with the mounting medical bills. He also hates just sitting around. PLEASE keep him (them) in your prayers.

Please check out the links below and our new photos

Much Peace, Prayers and HOPE for a cure for all childhood cancers
Ruthie, Scott, Emily and from heaven Seth

Monday, April 14, 2003 6:33 PM CDT

Hello Everyone

We would like to offer a fond thank you to some very special young people. This past weekend the “Relay for Life” was held in Jupiter. Relay for Life is a fundraiser for the American Cancer Society in which teams are formed to participate in a very long relay. During the event, which lasts for eighteen hours, one member of each team must be walking, or running, a course that was set up around some baseball fields. One such team was “Mrs. Fitterer’s Shooting Stars” composed mainly of students from St. Mark’s Episcopal School in Palm Beach Gardens. Mrs. Fitterer is a teacher at St. Mark’s and a cancer survivor. The “Shooting Stars” was there in full force, fifteen members strong. They participated in the Relay in Seth’s memory. Members of the Shooting Stars wore a button with Seth’s picture during the event. We extend a very special thanks to Jeff Regan who lit a luminary for Seth along the course.

We feel very honored. It is also very inspiring to know that there are young people in this world who have taken it upon themselves to help in the fight against cancer. They could have spent their Friday night going to the movies, watching TV, playing on the computer, hanging out with friends, whatever, and then they could have spent Saturday morning sleeping in or doing more of the same. But they gave all that up for a weekend to help others. They also spent a lot of time and energy raising donations. When we met the team on Friday night it did look like they were having a lot of fun. This is good. Fundraising should be fun. Check out the photos and you’ll see a picture of the team, although there are some problems with the photo. (I apologize for that shot, obviously I still haven’t figured out everything about our digital camera…I, of all people, should know better.) Thank you to the members of “Mrs. Fitterer’s Shooting Stars” for their outstanding random act of kindness to help those afflicted by cancer.


We have been talking to the wonderful folks from the Pediatric Oncology Support Team about starting a bereavement/support group (with POST monitoring it). We want be part of a group that understands not only the loss of our son but understands all the other issues (diag. of cancer, chemo, not being able to work to care for him, large medical bills…..). When I started talking to Annette and Sandy about the support group Sandy said something that really made me stop and think. She said we could not really deal with the grief of losing Seth until we dealt with the trauma of diag of cancer and everything that followed between that point of time and when Seth died. The group we are in now has about half the parents with children that died over the age of 20 to drug overdoses, car accidents and heart attacks. All the children except Seth died from sudden death. There is no one else in the group who had a child with cancer. There is no commonality for us. Please don’t get us wrong we feel for these parents, but are looking for something that will best serve our needs. There were 7 children that were Dr Gowda’s patients that died between mid November 2002 and now. We were also thinking that maybe a support group for parents with children who currently battling the disease. We are looking for feed back so leave us what you think (we are not asking you to commit to anything just your thoughts).

Thank you to all of you who offered to help with watering Seth’s grave while we are in Maine at Camp Sunshine. I think we have enough help now.

The cemetery is working on the “the outside will fill in theory”. What we can gather the sprinklers are “supposedly” working. The cemetery dose not want to use weed killer because the crab grass is somewhat green and helps make the area look (to them) presentable. They feel when (if) the outside area (in the section that Seth is buried in) starts filling in with St Augustine grass it will grow towards the middle and fill in all the dead spots (no pun attended). St Augustine grass is suppose to choke out weeds. Hmmmm wonder why all those fertilizer companies make special weed killer for St Augustine grass. Seth’s little spot has dollar weeds, crab grass and other weeds. My mom and dad went out Saturday evening and put down weed killer around Seth’s grave’s perimeter. I still go and water 4 X a week….Scott said it is going to be a dry week. We don’t trust the cemetery at this point to keep Seth’s area looking nice. Today is Monday 4/14/02 and I think it actually looks worse. It looks much dryer and some of the green grass is starting to turn brown.

This is a recent email from my mother……

“RUTHIE & SCOTT,
SAT. I WAS AT SETH'S GRAVE TO VISIT & WATER & I CAN UNDERSTAND YOUR BEING ANGRY & DEPRESSED OVER THE CONDITIONS THERE. I WAS ANGRY, AGGRAVATED & HURT. ANGRY & AGGRAVATED OVER THE WAY THE AREA AROUND HIS GRAVE & OTHERS WERE UNKEMPT. THE REASONS FOR IT BEING THAT WAY DEPENDS ON WHO YOU TALK WITH.
1 THERE IS NO PROBLEM, THE SPRINKLERS ARE WORKING
2 THE SPRINKLERS ARE NOT WORKING, BUT ARE BEING WORKED ON
3 THE AREA WAS "WINTERIZED" WHATEVER THAT MEANS
MY SISTER SAID IT MEANS, THE SPRINKLERS ARE NOT WORKING, THE GRASS IS DYING & THE WEEDS ARE TAKING OVER. I SUPPOSE THAT MEANS THAT FOR THE NEXT FEW MONTHS THE AREA WILL BE "SUMMERIZED". I AM HURTING BECAUSE, I NOT ONLY LOST MY LITTLE GRANDSON, BUT ALSO SEE MY CHILDREN (SETH'S MOM & DAD) GRIEVE & HAVE TO ENDURE THE POOR WAY THE AREA AROUND SETH'S RESTING PLACE IS BEING NEGLECTED. MAYBE IT IS TIME FOR ONE OF THE TV CHANNELS COME IN & SHOW OTHERS THE WAY IT IS BEING NEGLECTED. SETH'S GRANDMA”

Well Easter is almost upon us and it is truly bringing me down. Seth got his first Thomas the Train set 4 years ago when he was almost two. This started that love for trains. He use to love to have us hide the plastic eggs so he could hunt for them…. this would go way beyond Easter Day. We miss him so much. We miss that sweet laugh and that smile full of sunshine. We miss seeing him sit on the Easter Bunny’s lap this year.

LIGHT THE NIGHT……. The fund raiser put on by The Leukemia and Lymphoma Society is coming up very soon…Friday, SEPTEMBER 19th 2003…mark your calendars!!! We will be walking for “Team Seth” this year. We will post regular reminders as the event draws closer. I had so hoped and prayed that Seth would have carried his white survivor balloon this year.



Be sure to check out the links below and the new photos.

Much Peace and Hope for a cure for all childhood cancers
Scott, Ruthie, Emily and from heaven Seth

Saturday, April 5, 2003 7:39 PM CST

Dear Friends, it is Seth’s mommy writing again.

Well it has been alittle over 4 months since our little Seth left us. On some days it feels like it has been eternity since we last heard his voice or held him in our arms. On other days it seems like yesterday. We have been attending both a support group and family counseling. We think it has been helpful. I really like Raeann Meeker from Hospice (family counseling). She gives us homework. This week she gave us the game Jenga to play….with a twist. The pieces have questions written on them, for example..where do balloons go?, what is your favorite holiday?, tell about a time you felt at peace, what sound would you make to describe grief?, in your life you can erase one moment what would it be? and so on. This game was set up for people experiencing grief. The pieces are also colored on the side. There is a colored dice that comes with it so you have to pick a certain piece. We have to play it at least once before we go back for our next session. We will also be going to Camp Sunshine in May, a bereavement camp. This will be 5 days of (what I have been told) intensive therapy. Emily gets to go with us too and will be in a playgroup.

Well tonight was another one of those “first”. We took Emily to see the Easter Bunny at the Gardens Mall. We had her picture taken with him…..without Seth. God that hurt. To see her sitting there and not Seth sitting on the other knee. It sucks….but it is suppose to.

The cemetery issues still persist but we are making some progress. I am so thankful Scott has been handling this. I am very proud of the way he has been dealing the whole thing…I am too hurt and angry. I usually go and water Seth’s grave 4 days a week. The grass on his little piece of land is looking much better however the crab grass is still everywhere. I see new anthills popping up as well. We will give it another week before we take more action. I am looking for volunteers who will water Seth’s grave for me while we are in Maine (in May for Camp Sunshine). Nurse Tracy from the oncology floor said she would help. If you live in Royal Palm or Wellington and you could help let me know. There is a spicket about 40 feet from his grave; all you need is a watering can. I would really appreciate it.

I have been at work now for about a month. It is getting more tolerable to go in to the building. I am getting things accomplished. My supervisor has been extremely supportive. I am very fortunate. I was reading one child’s website, where the mother had to go back to work 10 days after she buried her daughter. That sucks!

Here is a family that lives in Kuwait. Their young son Yousef lost his battle with cancer and now they are living in the middle of a war. Yousef was treated at Duke. Please stop by his site and read what they write about their son and the war…..WARNING have a box of tissue handy. They talk about the evilness of Saddam and if they go out (which they try not to do) they have to take their gas masks. It really makes you stop and think! You can read a lot more about them by clicking on history or past journal entries on his site. Please leave them a message.
http://www.caringbridge.org/page/yousef/index.htm

Emily
The “wild woman” is taking, as she puts it “shwimming” lessons. My sister Dori watches Emily two days a week for us. She takes Emily and “baby Shayn” to Mari’s for “shwimming” lessons. Emily is doing very well (potty training is a whole other story). Dori said Emily is a real cheerleader. They got there about 5 minutes early last week. There was a young boy in the pool with Mari. Emily from the side of the pool would say, “you did it. You did great”. Emily will be 3 on June 24th. She also loves going to Hospice with us for family counseling. Raeann is so good with her. We have our session in the music/play therapy room. Emily loves to play on the piano, the drums and xylophone. She pretty much has the run of the place.
Whenever we pull up Seth’s website and she sees his picture at the top of the page she says “what a cute boy”.

Mom
She just celebrated her 73-rd birthday. Her sister Rita and her husband Chuck came down from the middle part of the state for a visit last night (they will be here for a few days). “Wild Woman” adores her grandma. Mom also watches Emily two days a week for us. Emily talks about going to Grandma’s house as soon as she wakes up. She tells me which way to go on my drive over there. When I try to leave with her in the later afternoon I have to chase her down. She does not want to leave. In church the last couple of Sundays we have not sat with my parents and everyone can hear Emily “PLEASE…see grandma” She drags out that “please”. She also says “help I am stuck” when I try to keep her with us….that echoes so well in church.

Dad
He got a good report from the Dr. He seems to be feeling alittle better. We just need to get some weight on him. It is not good when your father weighs less than you do. The Dr told him to eat what ever he wants…..but it depends on what he is in the mood for. He is eager to drive and get back to work, which is a great sign.

Thank you for checking on us. Don’t forget about Mitchell Mania tomorrow April 6th from 10 to 5. It is a fundraiser for Mitchell Mathis and his family. For more details go to
http://www.caringbridge.org/fl/mitchellmathis

Check out the new links below and our new pictures.


Much Peace to all of you
Ruthie

Saturday, March 29, 2003 2:35 PM CST

Hello,

Peace,

Scott, Seth’s Daddy again,

Thank you to everyone who responded to my last journal. Your e-mails and messages of support were very encouraging.

We have made some progress with Our Lady Queen of Peace Cemetery. At 8 AM on Monday I called the administrator at the cemetery and asked him to place Seth’s temporary marker back on his gravesite and to have that done before Ruthie was planning to be there (about 3 PM). He agreed and promised me it would be there before noon. I also told him I wanted that plaque to remain there until Seth’s permanent marker was delivered and put in place. He agreed to that also. Then we brought up the conditions of the grounds and my discontent with the current condition. According to him, there was not a problem and that everything out there looked fine. He asked me when I had seen this site. I said “Yesterday”. He didn’t respond.

Then I informed him that Ruthie was going there four times a week to water his grave and he said that was not necessary. My response was, “It is necessary if we want Seth’s site to look somewhat respectable”. My next question was regarding the sprinklers and that we had heard the sprinklers had not been working in that area for several months. He totally denied that and claimed that the damage to the area was due to frost. First of all, a few minutes earlier he claimed the area looked fine and now suddenly he’s talking about frost damage. Secondly, it must have been a very localized cold spell because other areas of the cemetery were in much better condition. How could Seth’s area have frost damage when the section on the other side of the roadway, less than a hundred feet away, had none?

I also brought up the issues of anthills and the crabgrass. The administrator said that within the next couple of weeks that area would be fertilized.

Ruthie was back at the cemetery on Tuesday and, to her surprise, a truck from Southeast Irrigation Systems was there and someone was working on the sprinkler system. Ruthie had just gotten back into the minivan after watering Seth’s grave when the sprinklers in his area started up.

Yesterday (Friday) Ruthie noticed that it looks as if the anthills are finally being treated with pesticide.

It took a few e-mails and a few phone calls, but we are finally getting what we want, our son’s gravesite and the area where he is buried to look respectable. Last weekend Seth’s site was unmarked surrounded by dead grass, crab grass and large anthills nearby. This was not what we were expecting when we decided on that cemetery.

All we want is what we were expecting to have in the first place, a site for Seth that looked nice. I don’t think we are asking for too much. Hopefully the cemetery will start honoring their obligation to keep that area looking respectable. If not, well, I have already began to take action to make sure that won’t happen. More about that in a later journal entry.

We did receive some news this past week that did make us happy. Our daughter Emily will be attending the same preschool that Seth attended starting in August. This is an awesome preschool. It is at the Rehabilitation Center for Children and Adults in Palm Beach. Seth attended school there from October 2001 until the end of May in 2002. (He was diagnosed in early June 2002 and unfortunately was never able to again attend school.) We cannot say enough good things about the teachers and staff at the preschool. Seth was so endeared to them. During his treatment he was always telling us he wanted to go back to school and we always hoped he would. We knew they took very good care of Seth and he made so much progress in the almost eight months he was there. We are looking forward to having Emily there. It was also nice for us to finally have something to smile about.

It has now been four months since Seth left us. Although somewhat more tolerable, the pain of his loss is felt every day. Every time I look into his room late at night I think that he should be there, peacefully sleeping in his bed. Every morning I look into that same bedroom and wish he would still be there for us to wake up. The past 17 weeks have been a long, painful walk. I still cry every day but I cannot imagine any father who, this soon after losing a small child wouldn’t. Grieving is not easy. There are times when I wish I could be happier. But I feel that if I don’t face my pain and deal with my feelings now I might never be able to go on and be content with my life again. I will always miss Seth. That is now part of who I am. Every June 21st I am going to wish that he could be here so we could wish him a Happy Birthday. Every Christmas will be just as difficult. He will always be in our hearts. We will always cherish his memory and the many wonderful days we spent with him. Remember that every day you spend with your children is a blessing. It might not be an easy day, but it is a gift nonetheless.


Peace,

Scott, Seth’s Daddy


PS Please check out the links below……Jalen really needs our prayers and support. Mitchell Mathis has a fundraiser coming up on April 6th. He has Leukemia and his mother has tumor in her leg. This family has been on the prayer list at Holy Name.
Also check out the our new pictures!!!!!!!!!!

Sunday, March 23, 2003 8:12 PM CST

Hello,

This is Scott, Seth’s Daddy writing again.

Soon we will have Seth’s marker. It is being made by a company in North Carolina. The proof came in last week and we are happy with how it looks.

What we are not happy with is the cemetery. Seth is buried at Our Lady Queen of Peace Catholic Cemetery in West Palm Beach. For those of you who live in our area, this cemetery is on Southern Boulevard just a few miles west of the South Florida Fairgrounds. When making Seth’s funeral arrangements, we purchased four plots together. We chose an area that was near a small garden. What we were not told at the time we purchased the plots was that the sprinkler system was not working in that area. Three and a half months later, the sprinkler system is still not working and the grounds look horrible. There is dead grass and crab grass everywhere. We even found some rather large anthills.

Several weeks ago Ruthie bought a garden hose, spray nozzle and a small watering jug. Ruthie goes to the cemetery at least three or four times a week to water Seth’s grave. There is a faucet about forty feet away for people who want to water flowers (the faucet delivers canal water so you have to be careful not to get too much on yourself). Ruthie hooks up the hose and then spends at least thirty minutes watering down the area while Emily uses the watering jug to water flowers. We are not going to wait for the management of Our Lady Queen of Peace Catholic Cemetery to get their act together. We want Seth’s gravesite to look nice, even if we have to do it ourselves. The people who run the cemetery seem to be in no hurry to get things fixed.

This past Friday Ruthie went to water Seth’s little piece of the world. What she found when she got there was very upsetting. The small brass plate that has marked Seth’s grave since he was buried was gone. The plate, a temporary marker, had Seth’s name and dates and was to be left there until his permanent marker is in place. Apparently the cemetery has a policy of removing those plates ninety days after burial, but they did so without informing us. In addition, the cemetery management knew Seth’s marker was on order and should have left the brass plate there for the few more weeks it will take to get his permanent marker delivered.

To add insult to injury, the water faucet near Seth’s grave wasn’t working on Friday either. Our son in now in an unmarked grave surrounded by crab grass. This I will not tolerate.

Ruthie called me from the cemetery grounds and informed me of what she had found. I called the cemetery office and spoke with Alexia, a woman who worked there with Ruthie’s father Wally. We know, like and trust Alexia. She told me she would get the brass plate back out there and that they were working on the faucet. This was Friday afternoon.

Saturday about noon Ruthie and I were back at the cemetery. The plate was still not on Seth’s grave, but at least the water worked. Today, Sunday, March 23, Ruthie, Emily and I went back to the cemetery after church. Of course, the brass plate still isn’t there, but this morning the water wasn’t working again either.

It puzzles me that the management of Our Lady Queen of Peace Catholic Cemetery can be so insensitive to the families whose loved ones are buried there. We paid a lot of money so that Seth’s grave would be well maintained and dignified. Sometimes I think the reason we have not been treated well is because we decided to buy Seth’s burial vault from Quattlebaum Funeral Home instead of the cemetery. We also ordered his marker from a company of our choosing, and not the company the cemetery wanted to do business with. Quattlebaum Funeral Home was so professional, so gracious and so sensitive to our needs. They took such wonderful care of us and our son. I would highly recommend their services, although I hope nobody I love needs them any time soon.

Our Lady Queen of Peace Catholic Cemetery has been, to say the least, disappointing, and, to say the most, disrespectful of my family, my son, his memory and me. My Father In Law has not worked there for several months, but I cannot image that he would tolerate any families to whom he sold plots to be treated the way we have been treated.

Tomorrow, Monday, March 24, I will call the cemetery first thing in the morning and speak to the manager. During this conversation I will emphatically emphasize, first and foremost, the importance of returning the brass plate to Seth’s grave. The water will also be a topic of discussion. We want to know when the canal water will be available again, which better be very soon, and when the sprinkler system will again be functional, which should also be very soon.

Ruthie will go there in the afternoon to see if Seth’s brass plate has been put back on his grave and to see if the water is working again. If the plate isn’t there she will call me. I have Monday afternoon off and will have plenty of time to drive to the cemetery and meet the management in person.

After all we have been through, none of this should be necessary. But more than principle is involved here. It is a matter of respect, not only for us, but also for everyone who needs to bury a loved one. We feel we are being taken advantage of.

Earlier today I was trying to put air in the tires of my Father-In-Laws minivan. After putting two quarters in the air machine, nothing happened and I didn’t get my money back. It was only fifty cents, but I didn’t get what I paid for. The clerk at the mini-mart gave me my fifty cents back, no questions asked. It is a sad day when you learn that the people at the convenience mart is more concerned for your business than the church-run company that sold you the cemetery plot for the little boy we loved so dearly.

Hopefully our next entry will be more upbeat. Thanks for letting me use this as a sounding board.

Peace,

Scott, Seth’s Daddy

Monday, March 17, 2003 7:18 PM CST

Hello Friends,

This is Scott, Seth’s daddy, and it is once again my turn to update the journal.

We are doing about as well as can be expected. It’s the pits, but it’s supposed to be the pits. There is no way to honestly or constructively get around, under, over or otherwise bypass the process. Grieving over the loss of Seth is a long, difficult walk. Parents who have had a similar loss have assured us that in time things do get more manageable. But it will never be easy and we will always miss him.

About a year ago we saw the first signs of his cancer but nobody would have imagined it at the time. We had taken Seth to a birthday party at My Gym, and although he wanted to play with all the other kids he was limping so badly he could barely walk. A few days later we took him to Dr. Kilpatrick who diagnosed his limping as toxic synovitis, inflammation in the joint lining membrane of the hip. A few doses of Motrin seemed to take care of the problem. We had no idea that this innocent little limp was a harbinger of a sinister disease. It is now very difficult for me to reflect on those days. Seth was only limping. Little boys get bumps and bruises all the time. It would be almost another three months before we would hear the word “cancer”.

Perhaps one of the more difficult aspects of what we have been through is that it seems like it was just yesterday that Seth was healthy, happy and enjoying life to the fullest. He was making so much progress at his preschool and he every day he was revealing more and more of his brilliant little mind. We had so much hope for him.

Ruthie, Emily and I will be going to Camp Sunshine in Maine. Camp Sunshine is a camp for families with children suffering from cancer and other serious illnesses. In May they have a special camp for bereavement and we will be spending about five days there. Seth will be with us in spirit. He spirit is always with us.

I want to acknowledge a very special group of people who are at the forefront of the battle against leukemia; lymphomas and other blood related cancers. In the past few months we have gotten to know several members of the Leukemia/Lymphoma Society’s Team in Training. Team in Training members raise money for the Leukemia/Lymphoma Society by running or walking marathons, doing triathlons and bicycling century rides (a century ride is 100 miles or more). This past January 177 runners and walkers from the Palm Beach Chapter of Team and Training participated in the Disney Marathon and collectively raised more than $360,000. Team members make incredible sacrifices in order to participate in these events. For many it is the first time they have ever attempted to run a marathon or ride a bike for 100 miles in a day. While in training, they often meet on Saturday mornings as early as 6 AM to go running. Several wonderful coaches donate their time to help train and motivate team members, in particular those who have never been avid runners or cyclists before. The sacrifice made by these wonderful souls is enormous. Their commitment to fighting these diseases is a tribute to capacity of the human spirit.

We are making progress in finding the cures for leukemia and lymphoma. Much is being said about the research taking place in laboratories, hospitals and medical trials. But a vital component in this process is the involvement of the communities. Every dollar raised by Team in Training, every mile run, every mile biked, every lap in the pool gets us a step closer to the cures we so desperately need. Team in Training members and the people who support them are nothing less than a vital component in the battle to defeat these diseases.

Many of you have asked if there is anything you can do for us. It would be a wonderful gesture to Seth’s memory and spirit if you would help us fight blood-related cancers by supporting a Team in Training member, or, better yet, becoming one. You can find out more information about Team in Training and for Teams in your area by going to their website, teamintraining.org.

Ruthie and I will be participating in the Disney Marathon in January of 2004. We will be doing this in Seth’s honor. Several years ago, when I was in my 20’s, I ran six miles a day four or five times a week. Now, more than fifteen years later, I am going to give it another go. The coaches and other Team in Training members have assured me that they will get me to the finish line. I don’t really think that I could do this on my own. But I will have Seth’s spirit to get me to the finish line.

Thanks for checking in on us.
Please check out the new photos and links below

Peace.

Scott, Seth’s Daddy.

Saturday, March 8, 2003 7:33 PM CST

Hello,

Sorry it has taken us a while to update……..

This was my first full week of work. The first couple of days were very rough. I would head straight up to the 3rd floor to see the wonderful ladies in the Pediatric Oncology Support Team office. Thank God they are there. They just sat and chatted with me until I could breath at a normal rate and stop crying. I also had a chance to see some families I had not seen in awhile. Sandy Munoz from that office has been a Godsend in helping us work through all the bills. Seth’s approximated bills for only 6 months of care was over a million dollars. We have been getting in piles of bills…I don’t even want to open them anymore. It is all too painful. Sandy is just awesome…. I can bring them to her; she sorts them and then puts them in piles and tells me what is what, what to pay and what not to pay.

There have been some folks who have asked if it has gotten “easier” with time. I don’t like the word “easier”. Life will never be “easy or easier” with out Seth. Scott and I are seeing a bereavement therapist Raeann Meeker at Hospice (Emily is allowed to come too). I like the word she uses…. things become more “tolerable”. However she also uses the analogy “the grief process of a loss of a child is like a never ending roller coaster ride”. I totally agree. It is a horrible ride you would pay dearly to never have to ride. When things are “a little more tolerable” that is the coasting part of the ride but it is those peeks and valleys that really get you. And remember IT IS A NEVER ENDING RIDE!!! The “grief attacks”are when the littlest thing can set an emotional roller coaster ride in to a major trip. Sometimes it is something you see or hear that reminds you of someone you lost. Sometimes it is a thought that just pops in to your head. Sometimes you have no clue. Raeann has also given us some books to read. I will share some from a book called Lessons by Susan Abbott. She lost her son to Leukemia.

“It’s been a time of re-examination of the very roots of existence and the very basics of belief - - a time of questioning, of evaluating, of learning.
And the learning is perhaps my most important tool,
my own personal yardstick of comparison of where I’ve been and where I am,
of figuring out just where this roller coaster of grief is taking me.
And this is what I have discovered.
I have learned that I am much stronger that I thought,
that I can survive against the most devastating blow
a person can sustain and,
though surviving is not the same as living, it is more than I expected.
I have withstood a living hell; I have walked through fire,
I have endured that which is beyond endurance
and I have kept on going.
And though sometimes one step forward means two steps backward,
I know I will keep on going.
For there is no hell, there is no fire---
there is nothing that could come any closer to destroying me
Than the loss of my son.”

We still don’t know anything about Camp Sunshine. We should hear in the next week or two if we have been accepted. I thought we were in but I was mistaken.

Scott, Emily and I met with the students from the Cardinal Newman High School Key Club this morning to deliver the donated books to the children on the oncology floor at St Mary’s. The students in that club also donated numerous baskets filled with everything from games, art supplies, gift certificates to McDonalds, school supplies and toys. These same type of baskets were also donated to the children who participate in the Child Development Center’s programs (this is where I work) one week before. They are all high school students who put these baskets together. I was overwhelmed and left speechless at the sheer number of baskets and books. They all took turns reading and playing games with the kids who were on the floor today. Most of the students wrote very touching notes included with the baskets. It is rewarding to see the thoughtfulness of those students. I know the therapist at my office were so excited to be able to give the goodies to their clients. We have included a picture from today in the photo album. Scott and I plan on doing future projects with them. Also it was great to see the nurses that we love so much and our “Dr. G”. A BIG thank you to everyone who donated books to the Pediatric Oncology floor at St Mary’s Medical Center. We picked up another box this morning from our friend Marissa. Thank you to her and everyone who gave her books. We will also be donating new books to Seth’s preschool, The Rehabilitation Center for Children and Adults in his memory.

Scott, Emily and I left from St Mary’s to attend the Leukemia/Lymphoma Team In Training picnic at John Prince Park. They are such a wonderful group of people. They are so caring and giving of their time. The day ended with a water balloon fight that Emily thoroughly enjoyed. She even got her daddy wet. It we had a great time.
Seth’s friend Amanda Schultheis was named Leukemia & Lymphoma Society Girl of the Year. You can visit her at www.caringbridge.org/page/amandajo


The National Childhood Cancer Foundation is an organization that helps families who have children with cancer. They also do a number of fundraisers. One of them is to sell everyday cards, Christmas cards, calendar etc….. The cards and calendars show the artwork of children who have cancer. The child’s picture and short bio is on the back. We are submitting some of Seth’s artwork. I did not want to part with the originals so the woman at NCCF said she understood and I could send in “a high resolution scan” of the pictures. We are using a picture of the train he drew on the ceiling tile at St Mary’s. There are few others I am sending in. One is a train he drew for our friend Lee. When I called Lee to ask for the picture I was very touched to hear he had it framed and hanging on his wall at home. He is such a wonderful man. Lee said he would be very jazzed if they use the picture Seth drew for him. I sure hope the NCCF uses some of Seth’s artwork.

Some of you have emailed me about my mentioning problems at the cemetery. It is not that they will not allow a train on his marker….not yet anyway. Lets just say if you see us out there with our garden hose “having” to water Seth’s grave in order to keep the grass alive, that should be a hint to one of our issues with them.

Thank you so much to Teresa, Amanda’s mom for putting flowers on Seth’s grave and helping me with watering his little spot on earth.



Mom
Thank you for all your prayers. All of mom’s stress tests came back normal. She seems to be feeling better these days. We just have to keep on her to eat right and get enough rest.

Dad
He has been approved for the new drug “Iressa”. This is the drug that has not been approved by the FDA. He should start on it this coming week. One of mom’s biggest concerns is keeping weight on him. He said he is “sick” of chicken. When you are on chemo it can effect your taste of foods too. Hopefully this new drug won’t do that.



Thank you to all of you who checked on our friend Zac and his mom Natalee. I think I will switch out the links below everytime I up date so PLEASE take some time to visit our friends.
Soooooo check out the new links below and the new pictures in the photo album section.

Much Peace & God Bless
Ruthie, Scott, Emily and from heaven Seth

Thursday, February 27, 2003 8:41 PM CST

Hi everyone,

Mom
First my mom’s blood work came back and everything was negative. Thank God!! She saw the cardiologist Tuesday and the Dr said mom has a heart murmur (which she has known about) and a “leakage”. She is not sure what that means. The Dr ordered an Echo/cardiolite stress test. That was done today. The Dr is supposed to call her in the morning with the results. I will post results next entry.

Dad
He was supposed to start on the new medication this week (instead of chemo). This is the drug the FDA has not approved of yet but the Oncologist at St Mary’s and Good Sam has. However there are still some issues that need to be worked out. I guess they will know more next week.

One of the wonderful things that the internet can do is keep us in touch with all the wonderful people like you who visit Seth’s site to check up on us. A couple of weeks ago Seth’s Daddy wrote a journal entry regarding the hope for world peace because if there is a war soon there is a good possibility that there will be many more bereaved parents in this world. Scott’s parents live in Kingman, Arizona, and they wanted to spread this message so they printed that entry and delivered it to their local newspaper, The Kingman Daily Miner. The columnist at that paper, Abbie Gripman, wrote an article about our family and what Scott had written. Here is what she put in the paper.

Get A Grip - Spend money on healing, not killing
Column by Abbie Gripman
Miner news editor

On my desk the other day I found a picture of an adorable little boy. His big blue eyes and sweet smile jumped from a copy of a Web site page. His name, Seth, is spelled out in large letters above his grinning image.

I picked up the page and took a closer look, wondering why this little boy’s picture was on my desk. In smaller letters, below the picture, I read that Seth was diagnosed with leukemia last summer. He died in November; he was only 5 years old.

My heart lurched.

More pages were attached to this one and, compelled by this little boy’s smile, I read on. A note on the next page explained the appearance of these papers on my desk. Seth’s grandparents, Richard and Charlene Bunkelmann of Kingman, wanted to share some words their son Scott, a 1978 graduate of Kingman High School, wrote in the aftermath of his son’s death.
“We would like to share (this) with the people of Kingman,” the Bunkelmann’s wrote. Actually, the people of the world should read Scott’s heartfelt message. But absent such a stage, I share some of his words with you here:

I am very concerned these days. It seems like there is a strong possibility that our country could soon be involved in a war and many lives could be put in peril. I hope a way is found to protect our country and our people without bloodshed. I am not trying to be political, but over the past two months I have come to know the pain and anguish that goes with being a bereaved parent. It is an abyss, pure hell to go through and grief that at times is unbearable. Should we go to war there could be thousands, perhaps millions of other parents who will soon know an agony that I wouldn’t wish on anyone. Parents who lose their adult children go through the same pain that we are in over the loss of our five-year-old. I pray for all parents, American and Iraqi, whoever they are.

We dearly loved our son, but ultimately we were powerless to save him. We are not powerless to save the children of other parents. Again, I don’t mean to be political, but please pray for peace. We need to show the rest of the world that we hold life precious.

One thing that troubles me deeply is that I am convinced we could have a cure to nearly every case of leukemia and many other horrible diseases if we, as a human race, were more committed to healing instead of killing. The technology we have developed for warfare is phenomenal. I wonder what might happen if the brilliant minds that developed smart bombs and guided missile technology had instead focused their talents on researching new treatments and cures for cancer and other diseases.

We are a very benevolent nation and we have proved that over the years with mountains of foreign aid. But I don’t think enough of the world sees that side of us. Children are more important than oil fields, and we have to do a better job of letting the rest of the world know that we feel that way.

Like I’ve written before, I am not trying to be political. But imagine a world at peace. Imagine a world where governments like ours didn’t have to spend untold billions every year on devising new ways to kill the enemy. Imagine if that money could be used on cancer research, curing all diseases, making roads and cars safer, building more efficient energy cars, saving the environment. Imagine a world where ending human suffering is our priority. Imagine a world where hope wins out over hate.

Will I ever see such a world? I wouldn’t bet my next paycheck on it. But it all starts with us. A world like this could exist if enough people want it to exist.

Something I have learned over the past horrible eight months is how good people can be to each other. We don’t understand why God did not spare our son Seth from that dreaded disease, but he surrounded us with people who let us know that we were loved and cared for. The rest of the world needs to know that we Americans can be good to each other, and we can be good to them too.

My heart aches for the Bunkelmann family and for all families that have ever had to endure such an inexplicable loss. And I pray, like Scott, that we can let the world (and our own leaders) know that all Americans don’t want a war. Some Americans, like Seth’s grieving daddy, believe peace is possible.

We thank Abbie for helping to spread the hope of world peace through a newspaper. The internet is wonderful, but newspapers are still a great way to get the word out.

Peace,

Scott, Ruthie, Emily and, from Heaven, Seth
The Bunkelmanns

Saturday, February 22, 2003 8:47 PM CST

Well it has been 12 weeks since our sweet boy left us. I so want to hear his voice. I want to hold him in my arms. I have thought of things he use to do…. like if we were in the car and Scott ran in to the store for a minute and the kids and I would wait outside…Seth would want to get out of his carseat so he could “keep Emily”. He would get real close to her and talk to her. We use to laugh and say it was just an excuse to get out of his carseat. Terri Johnson reminded me how every time we went in to the Pediatric Oncology Support Team office Seth had to leave with something for him and Emily. It was the same when we went to McDonalds or Dunkin Donuts. He would get very upset if I did not get 2 of everything even if it was just the two of us. He would say, “get one for Emily”. He was such a good big brother. I look at the new truck like carts at Publix; he would have loved those. He use to call the carts with the yellow bench seats “train carts”.

I went back to work starting last Tuesday. I did ok until I got to 45th street and my heart started racing and I started crying. I thought my heart was going to explode. For those of you who don’t know my office is in a 3-story building on the campus of St Mary’s Hospital. Seth’s Oncologist is on the 3rd floor (right next door to the Pediatric Oncology Support Team’s office) and my office is on the 2nd. I got to the front door of the main building and beeline it up the stairs to the Pediatric Oncology Support Teams office. I was meet there by Terri and Barbara. They are awesome folks. Barbara sat with me for at least a half-hour until I was calm enough to go down stairs. As we headed down the hall we ran in to Rebecca, Scott and Zman. We chatted a bit but I knew if I did not sit down soon I would bolt. I just felt like I was going to jump out of my skin. I sat in my office for a while shaking and crying. All the mother’s day gifts Seth had made at school last year sat there staring back at me. I was last in my office the end of May 2002. My supervisor came in and chatted with me. I knew I could not handle seeing a lot of people. The rest of the staff at The Early Intervention Program knew it too and no one came by. My office mate Marissa was very quiet and kept the door shut. I was there a couple of hours and left.

Wednesday was much like Tuesday with one exception. Dr Ted Wasserman came to let me know that several of my co-workers in the Child Development Center had done something special to honor Seth’s memory. They donated money to buy a Brio trainset and table for the waiting room in our office. (For those of you, who don’t know, Brio is a line of wooden toy trains. Seth was extremely fond of wooden toy trains.) The train set and table is being set up and a plaque will also be there in Seth’s memory. I will put a picture in the photo section once it is complete. I was very touched.

Then everything went down hill. My mom had been watching Emily Tuesday and Wednesday (as she had been doing for the last 2 and ½ years). When I got to my folks house my mom said she was not feeling well and called the Dr. He told her to come in. I put Emily in the van and mom and I took off for Jupiter. The Dr saw her and did an EKG. He said she had an abnormal EKG. She also had a heart murmur, which she has had for years. He also said she was fatigued. He felt she was not getting enough oxygen to her heart and wanted her to be seen by a cardiologist. He also wanted some blood work done. It was really late when we got home. I called my supervisor and let her know I would not be in on Thursday. I got up Thursday and took Emily and my mom to Quest Diag. and had blood work done. Mom called the cardiologist when she got home and the earliest appointment would not be until 3/13/03. I told her to call her Dr and see if that was expectable. She did not talk to her Dr until Friday and he wants her to be seen by the cardiologist by Monday or Tuesday. He told her if she had any problems over the weekend to go strength to the ER. He told her to rest over the weekend. Remember she also cares for my father who has cancer.

We are having some issues with the cemetery that Seth is buried at but I can’t get in to that right now. I will post when I can.

PLEASE don’t anyone tell me that God does not give you anymore than you can handle!! I know a few parents with kids with cancer (including Scott and me) that will tell you that is a load of *&^%!!!!!!
GOD DID NOT give my sweet child cancer. GOD DID NOT give my dad cancer. GOD DID NOT give my mother heart problems.

God grieves with us. He also helps give us the strength to deal with all these terrible things that have happened over the past several months. One thing God has done is that he has sent many people, like you, to help us through. Knowing that you care makes a world of difference. We always appreciate the e-mails and the messages left on this web site. Your kindness and concern will always be remembered.


Please sign our guestbook and check out the new pictures
Please keep our family in your prayers

Much Peace and God Bless
Scott and Ruthie

Monday, February 17, 2003 1:49 PM CST

Hello everyone,

We have attended a few Leukemia/Lymphoma Society events in the last couple of weeks. The first one was an appreciation party for Team In Training Volunteers. These folks are AWESOME! It is a big commitment on their part. Scott calls it “a HUGE Random Act of Kindness”! These wonderful people are so kind and giving of their time. At this event they gave us a jersey that all the participants in the Disney Marathon signed. The jersey also had the little star pins that they each designed, wore on their own jersey when they ran. It was very emotional.

This past Saturday we went to the training of the swim part of the up coming triathlon. One of the coaches (Stan) asked us to come and give the members a motivational talk. Scott did the talking. I stood there next to him with tears running down my checks. I was so proud of him. He talked about the fact that Seth had the most treatable and curable cancer. That about 90% of the children with acute lymphoblastic leukemia survive. Why did our sweet child fall in to that 10%? That is why we will continue to fight.

Pretty soon we will be introducing you to a new site in honor of Seth. TeamSeth.com will start taking shape within the next couple of months. You can now find it on the web but the site has only one page;“the future site of TeamSeth”. Stay tuned for more details.

Two more children lost their battle with Leukemia. Meghan became an angel on Friday the 7th www.caringbridge.org/fl/meghansjourney . Yesterday the 16th Alexandria became an angle www.caringbridge.org/page/alexandriasangels .I have 36 caringbridge websites logged in to my “favorites”. Out of the 36, 10 have passed away. That is heart breaking. Ten is too many….for that matter ONE is too many.

We went to our first “Hearts and Hope” group meeting. I was very nervous. We sat and ate dinner before the meeting started and talked to a few parents. A “potluck” dinner is part of the program. Scott brought pizza. They want us to commit to 6 sessions. We will try it. Although I can’t share stories that are shared during the session another family said when they first started (their daughter died almost a year ago) they were coming here for their other children and after 6 sessions they were out of here. They are still coming and they have been part of the group for a while.

I had sent in Seth’s name to be added to the Christmas Tree in Washington (right after he passed away). It is sponsored by Candlelighters/Childhood Cancer Awareness (it is decorated with gold ribbons with the children’s name on it). I have not received the ribbon yet. I contacted them and they said they sent out all the ones they had but there were some that the addresses fell off the ribbon. They said they would check and get back to me. I hope they find it.
To see the tree go to
www.candlelighters.org/cancerawarenesstree2002.stm

We have changed banks for Seth’s account. It is now with Fidelity Federal. Cyndi Roach is the Vice President/Branch Manager. The address of the bank is 950 Northlake Blvd. Lake Park, Florida, 33408, and the phone number is 561.842.4266.

Thank you to Randee Gabriel with Parent to Parent of Palm Beach County. She dedicated the front page of the January newsletter in Seth’s memory. It was absolutely beautiful. She quoted a lot of the Random Acts of Kindness, which were posted on Seth’ s web site.
Thank you again Randee it was very thoughtful and much appreciated.

Dad

He got his MRI results today and they were worse than the ones before. The Dr has taken him off chemo to try a new drug that has not been approved by the FDA. It may be approved by May 2003. However all the Oncologist at Good Sam and St Mary’s have approved it. Dad and mom had to make a decision to try it or not. Dad signed the papers. If he did not sign he could go back on chemo or do nothing. The Dr said that at any time he wants to stop the use of this new drug he can and go back on chemo. The side effects are not as bad as the chemo, diarrhea being the worst with this new drug. They will know in about a month whether it is working or not. Please pray for him!
I thought I was going to have to put off my return to work for another week or so because my mom’s vertigo was giving her problems these last few days. However when I spoke to her this AM she said she felt much better.

See new photos

Thank you again for all your support, prayers and love
God Bless
Scott and Ruthie

Tueday, February 11, 2003 8:43 PM CST

A Million Times


A million times we’ve needed you,

A million times we’ve cried.

If love alone could have saved you,

You never would have died.

In life we loved you dearly,

In death we love you still.

In our hearts you hold a place

No one else will ever fill.

It broke our hearts to lose you,

But you didn’t go alone.

Part of us went with you,

The day God took you Home.

Author Unknown





There are many things I have not been able to do since Seth left us. One is to go in to our backyard. He loved to play back there especially with his daddy. He loved his swings, splashing in the pool and playing with his construction trucks in the dirt. There are 3 large trucks that still sit back there just where he left them in September. When Scott works in the backyard he walks around them. Neither of us have the strength, the heart or the need to move them. I can see them clearly from our sliding glass doors.

We have our first meeting with Hearts and Hope this week. We “hope” it will meet our needs. Scott and I have agreed to give everything we try (in terms of counseling) at least 2 visits before making a decision to go back or not.


So many of you have asked how Scott and I are doing as a couple. Most professionals will tell you that a major life event like the loss of a child can tear a marriage apart. I was listening to my favorite radio station WAY FM today at 11:00 that is when they air Focus on the Family. Basically what they talked about is that the greatest gift we can give our children is a healthy marriage. Scott and I always believed our kids learn from our example. We also believe we, as their parents are their teachers of life. So they learn from our example how to love, respect one another, solve problems, deal with sadness, sorrow and at the top of the list communicate. Our relationship will always be a work in progress. There is no such thing as a “perfect” marriage. We have learned through “this lesson” which we did not choose yet had to go through to be more patient, understanding, loving, listen better and above all communicate.



I have started training for the Team in Training Disney Marathon that is scheduled for next Jan 2004. The runners run about 26 miles and I thought surly the walkers only walk half that…….WRONG! The walkers also walk 26 miles. I think it will take me a week to do that. The other seasoned walkers have assured me that I will make it in a day. They said some of the walkers walk faster than the runners. I have a feeling I need to pack a sleeping bag for this event.


The book collection is going well. For those who don’t know the Key Club at Cardinal Newman High School has adopted the Pediatric Oncology Floor at St Mary’s as one of their causes. They are collecting new books and will deliver them in March. A teacher named Kathy Lewis is in charge of the group and she is very proud of her students. The books that I have collected I am putting stickers with Seth’s name and picture in the book. I have gotten a bunch of different kinds of books, for all ages and activity books as well. A BIG THANK YOU to Susan Nero, Kim Barnes, Deanna Herbst and Linda Bowers who have already given me a bunch of books.


We might be heading north my friends….No no no we are not moving but we might be going to Camp Sunshine in Maine in May. Amanda’s wonderful mom Laurie was so thoughtful to think of us and sent me info on the Bereavement Camp that takes place there. I spoke to the woman in charge Laura Bean on Monday. She said the camp is only open to previous campers…bummer……BUT if at about 6 weeks prior to the event date they are not full then they open up registration to “outsiders”. They take about 30 families and right now they have 8 signed up. The camp cost around $1,500 but there is no cost to us…even though we are “outsiders”. The only thing we have to cover is the transportation getting there…that might be a reason we don’t go. We will see what happens in the next couple of weeks. So anyone out there reading this and you are interested in the camp check it out at…
www.campsunshine.org
We spoke to Annette today (one of the wonderful folks from POST) and she said there is no problem with us being accepted to camp because we are part of their program. However we still have to get the cost of the flight covered.


I will be heading back to work next week. I liked being here at the house when Scott comes home for lunch and cooking dinner for him…..don’t worry we have poison control on speed dial. I am sure some of you are going “ hmmm-mental note to self: don’t accept dinner at the Bunkelmann’s unless we know she ordered take out”.

To all my wonderful friends at St Mary’s please know there are no words to express how thankful I am for your kindness, support, love and concern for my family and me over these last very difficult and painful 8 months. Please know I appreciate everything you have done and are trying to do. Know that going back to work is going to be extremely difficult for me. This is where my child was born and died 5 very short years later. Know that going back to work is going to take every bit of strength and energy I have to get through a day even just an hour. Please I ask that you respect my need for my private space. Don’t hesitate to say “hello” but understand that is all I am capable of giving back to you right now.

Please remember in your prayers all of Seth’s young friends who have been afflicted with cancer.

DAD

My dad is having back pain again and the Dr is concerned that maybe the cancer is back in his bones. He is having a bone scan done this Thursday. The Dr has taken him off chemo and is going to try a new drug. He has to be off the chemo 2 weeks before he can start the new drug.
Please keep my dad and mom in your prayers.

Check out the new photos

Much Peace, Love and Hope for a cure of all childhood cancers
Ruthie

Thursday, February 6, 2003 8:11 PM CST

Thank you for checking in on us and for keeping up with Seth’s website.

This is Scott, Seth’s Daddy, writing again.

Events over the past weekend made a lot of people think. Of the seven astronauts who died on Columbia six were married and five had children. I have seen some of the parents of the astronauts interviewed on the news over the past few days. Their parents are now, like us, bereaved parents. It doesn’t matter if your son or daughter was a child or an adult. For the parents it is still the worst loss. It was a tragic loss of seven brave men and women. I mourn for their spouses, sons, daughters, brothers, sisters and their parents.

I am very concerned these days. It seems like there is a strong possibility that our country could soon be involved in a war and many lives could be put in peril. I hope a way is found to protect our country and our people without bloodshed. I am not trying to be political, but over the past two months I have come to know the pain and anguish that goes with being a bereaved parent. It is an abyss, pure hell to go through and grief that at times is unbearable. Should we go to war there could be thousands, perhaps millions of other parents who will soon know an agony that I wouldn’t wish on anyone. Parents who lose their adult children go through the same pain that we are in over the loss of our five-year-old. I pray for all parents, American and Iraqi, whoever they are.

Sting has a song on his “Dream of the Blue Turtle” album titled “Russians.” It was released in 1985 when the United States and the Soviet Union were still involved in the Cold War. The song pleads with the leaders of those countries to consider the consequences of war before giving up on peace. One particularly poignant line repeated in the chorus is; “I hope the Russians love their children too.” I think there are many parents around the world, in all countries, who love their children.

We dearly loved our son, but ultimately we were powerless to save him. We are not powerless to save the children of other parents. Again, I don’t mean to be political, but please pray for peace. We need to show the rest of the world that we hold life precious.

One thing that troubles me deeply is that I am convinced we could have a cure nearly every case of leukemia and many other horrible diseases if we, as a human race, were more committed to healing instead of killing. The technology we have developed for warfare is phenomenal. I wonder what might happen if the brilliant minds that developed smart bombs and guided missile technology had instead focused their talents on researching new treatments and cures for cancer and other diseases.

Yes, terrorism is a real threat to our country. I don’t totally understand why so many people hate Americans. Maybe the problem is in part that the rest of the world thinks that Americans are too selfish. Many believe we want to invade Iraq to secure our supply of oil. There is some truth to this. But a heinous madman who has no regard for human life rules Iraq. Why are so many people in so many other countries against us?

It is my belief that our country has a world wide public relations problem. The rest of the world sees Americans as people who will go to extreme lengths to get what we need and justify it by declaring that we are trying to do what is best for our children. What if people in other countries knew that we care about all children, including theirs? We are a very benevolent nation and we have proved that over the years with mountains of foreign aide. But I don’t think enough of the world sees that side of us. Children are more important than oil fields, and we have to do a better job of letting the rest of the world know that we feel that way.

Like I’ve written twice before, I am not trying to be political. But imagine a world at peace. Imagine a world where governments like ours didn’t have to spend untold billions every year on devising new ways to kill the enemy. Imagine if that money could be used on cancer research, curing all diseases, making roads and cars safer, building more efficient energy cars, saving the environment. Imagine a world where ending human suffering is our priority. Imagine a world where hope wins out over hate.

Will ever see such a world in my lifetime? I wouldn’t bet my next paycheck on it. But it all starts with us. A world like this could exist if enough people want it to exist. There is one thing that I am sure of and this is if we did live in a world like this by now we would have found a cure for the disease that took Seth’s life.

Something I have learned over the past horrible eight months is how good people can be to each other. Many people have reached out to us. From our families and friends, to people who did not know us, we have been touched and comforted by so many. Your support and prayers have let us know that we are not alone. We don’t understand why God did not spare our son Seth from that dreaded disease, but he surrounded us with people like you who let us know that we were loved and cared for. You will always have a special place in our hearts for everything you’ve done for us. The rest of the world needs to know that we Americans can be good to each other, and we can be good to them too.

As if I haven’t given you enough reading material, let me just close with this:

Show others the care and concern you have shown for us. I know most of you probably already to this. Keep up the good work.
Practice random acts of kindness.
Love your children, and find a way to let the rest of the world know that you love their children too.
Pray for peace.

Peace,

Scott, Seth’s Daddy

Friday, January 31, 2003 at 08:16 PM (CST)

When you are sorrowful, look again in your heart and you shall see in truth you are weeping for that which has been your delight.
Kahlil Gibran.

Yesterday was the 30th,two months since Seth left us. It was a difficult day to get through.

Hello everyone. Today was a better day. My sister Dori reminded me that for the few thoughtless people out there are so many more beautiful caring people who have touched our lives. Like…..

West Photo in Palm Beach Gardens (corner of PGA and Military Trail). Bob West did a rush order for us when Seth passed away. He did the enlarged picture that was at the viewing. The negative was scratched and he fixed it and put it on a CD for us. He has been very kind and generous to us. He did not know us, but he knew our story. I have about 15 rolls of film that we have taken over the last year. Recently I started taking in 2 rolls at a time (what we could afford) to develop and put on CD. When Bob found out he was concerned about the color losing its luster (rolls of undeveloped film sitting and not being developed for so long). He offered to help us work it out so we could get them all developed at once. I left there feeling wonderful that a stranger who owns his own business was willing to help us.

A wonderful woman (mother of 4) is coordinating a book collection of NEW books for the Pediatric Oncology floor at St Mary’s. Her name is Susan Nero and she goes to our church, Holy Name of Jesus. She said it started with students from Cardinal Newman High School and she jumped on the “book wagon”. We are looking for new books for little ones up to really big kids. I would ask if you are interested and you have a healthy child to have them pick out a new book they would like and donate it. I will have stickers that will say “In loving memory of Seth Bunkelmann” with his picture if you want it added to your book. Activity books/one time use books are great too (the ones that use magic pens to make things appear, seek and find books etc.). Any kind of book that would interest a child 0 –19. Cardinal Newman Highschool students will deliver them on March 9th. Books can be dropped off at my office (Child Development Center at St Mary’s suite 201, I will be there starting Feb 18th), Holy Name of Jesus Church rectory ATT: Susan Nero/Respect Life, or my mom’s house.

Then there is Dan Menzel Vice President of Southeastern Sales of Warner Bros. who had a wonderful picture made in Seth’s memory. He knows Scott through work and did this as a surprise. It is a framed animation cell with Bugs Bunny, Porky Pig and Daffy Duck sitting around a toy train. Above them is “In loving memory of “Trainman”, and below is “Seth Charles Bunkelmann”. See photo section.

There have been so many others of you who been so helpful to us. Thank you!

The upsetting thing I found out was through Gooch’s mom Chris. Gooch also has Leukemia. She list (with parent permission) other kid’s caringbridge sites on a link on Gooch’s page. She found out that one the sites that someone wanted her to list was a fake. Can you believe that one? Some one faked a site about a child with a brain tumor. She said last year she discovered a fake “Seth” site. What kind of sick people are out there? Anyway thanks to Chris and Amie “the official caringbridge sleuths” they took the site off. You can visit Gooch’s site at www.caringbridge.org/page/gooch

Emily is sick again. She has the runny nose and nasty cough thing going. This is the 3rd time since Seth passed away. Not sure what to make of it.

Scott and I are hanging in there at best. We met with Dr Schechtman (our Pediatrician) a few nights ago to sit and chat. It is so hard to lose a child. I hope and no one else would ever have to know such pain and agony. Dr Schechtman had some thoughts for us to help us in the healing process, which we are pursuing. “Time” there is that word again. Sleep has been difficult for us these days.

Another mother Janet Sims shared her story with us (www.caringbridge.org/al/janiesims) She lost her beautiful daughter Janie in early January of this year. Janie’s story was so hauntingly similar to Seth’s. That most treatable and curable cancer story. The sweet little girl was doing so well just like Seth and then relapse, again no one expected it. Still everyone thought they would recover from this. In Seth ‘s case to relapse during chemo treatment was a bad sign, I know that now. He is such a sweet innocent child, it is so unfair. Like Janet I thought I did everything I was suppose to do. I was very careful when I was pregnant. I never took medications, gave up my diet coke and ate well. I breast-fed him to help his immune system, according to the experts. I never let anyone but my mother baby-sit for the longest time until I finally let my sister. We were very protective of him. Isn’t that what we are suppose to do as parents? Protect our children from harm? Yet we could not save him from this most curable and treatable disease. It is so unfair. Janet shared that she goes to the photo section of Janie’s web page just to look at her face. I have been doing the same thing. John our wonderful computer guy made the website our home page so as soon as the computer goes on there is that sweet sunshine face smiling back at us.

NOTE* Janie’s mom Janet has written a couple of books which you can get more information when you visit Janie’s website.


I will be heading back to work soon. For those of you who do not know I work at St Mary’s where my sweet child was treated for his cancer and eventually died. My office is in the same building as Dr Gowda (Seth’s oncologist) but on the 2nd floor. It is going to be difficult to go back there. Everytime I think about it, the last week of Seth’s life when he was in PICU comes rushing back at me. It is so incredibly painful. I have such vivid pictures of those final days. It is going to be heartbreakingly painful steps. Yesterday being the 2-month anniversary of his death was so difficult. My heart aches to hold him and to hear his sweet little voice.


See new photos

Much Peace and God Bless
Ruthie

Saturday, January 25, 2003 at 01:32 PM (CST)

Hello friends…

First a BIG Thank You to all of you who have gotten my emails and visited Caringbridge sites of other children at my request. I can’t tell you how much that means to us. This act of kindness brings a smile to our hearts and helps other families as well.

Well it has been 8 weeks since we lost our little Seth. Weekends are very difficult for us. We use to get excited about weekends, the 4 of us doing whatever together.

When Seth was first diag. with cancer everyone kept saying life you use to have would change. You now have a new “normal”. That new normal life would be filled with lots of hand washing, Dr visits, hospital stays, chemo etc….. Once Seth passed away we were still told that we would come to know a “new normal” life with out him. Well the only place we can find NORMAL now is the setting on the dryer.

I shared with Bo Mathis one of the phone calls I had in the past weeks. It seems some folks out there just don’t get it when you tell them that your 5-year-old son died of cancer. I was talking to a man on the phone trying to make changes to our insurance (after Seth died). He wanted to know why I was doing it now. Again I told him my son died. His response to me was “what was the actual date of that event?” Not I am sorry for the loss of your son or when did he die. Geez!
There was a woman who called from a medical supply company that had delivered a pump and an IV pole to our house on the only day in November that Seth was home. We had it picked up mid December. Seth was never home to use it. Anyway last week I got a call from this woman who shouted at me after I said hello.”Did you know that your son was disenrolled from your insurance?” I said to her he died. With out another word and in the same tone she said, “I guess that is why we could not get paid for December. Well we need to come pick up the stuff.” I told her that some one did weeks ago. She said to me “do you have to paper to show it?” I told her that life has been hell since I lost my child and I am sure the paper was around here somewhere. She said to me “was it our truck that picked it up? What did the truck look like?” By that point I am in tears. She told me to find the paper and call her back.
Then there is the bank where Seth’s fund is set up. We were given checks with “Seth Bunkelmann Fund” on top. Scott wrote a check to Quattlebaum Funeral Home. The bank sent us a note saying they would not pay on the check. I was VERY upset to say the least when I got a note in the mail (not a phone call but a note). I called Scott. He said there was enough money in the account to cover that check. Scott called the bank and called me back. The bank said they made a mistake (one of many). The woman at the bank said first we have to give them a list of “who” we are sending money to. She added anyone who donated money to Seth’s account could call her to see how we are spending the money. IT WAS TO THE FUNERAL HOME LADY!!!! Then she said it was her mistake and she should have never given us checks to begin with. She said only the bank can issue checks on this kind of an account. I called her after I got off the phone with Scott. I told her how upset I was. The check went to QUATTLEBAUM FUNERAL HOME and not Party City. She said they would get a check and overnight it to the funeral home. Greg Quattlebaum is a wonderful man (we went to highschool together). He never called us he went directly to the bank and she told him the same thing. This happened 2 weeks ago and we don’t think the bank has sent a check yet.

We have found a support group with Hearts and Hope. It meets 2X a month. We went just for the intake on Friday. Emily is too young for the sibling groups. The first meeting is not till February. They want a commitment of 6 sessions. We will try it and see how it goes. We are each continuing to see someone privately. Scott has read at least 4 books (recommended readings for parents who have lost a child) and picked up more last night. I am only on my second one.



HE ONLY TOOK MY HAND

Last night while I was trying to sleep
My son's voice I did hear
I opened my eyes and looked around
But he did not appear.

He said "Mommy you've got to listen,
You've got to understand
God didn't take me from you Mommy
He only took my hand

When I called out in pain that night,
The instant that I died,
He reached down and took my hand,
He pulled me to his side.

He pulled me up and saved me
From the misery and pain
My body was hurt so badly inside,
I could never be the same.

My search is really over now,
I've found happiness within,
All the answers to my empty dreams
And all that might have been.

I love you and miss you so,
And I'll always be nearby.
My body's gone forever,
But my spirit will never die!

And so mommy, you must go on now,
Live one day at a time.
Just understand-
God did not take me from you,
He only took my hand."


See new photos

Much Peace and love Ruthie

Tuesday, January 21, 2003 at 11:02 PM (CST)

Death is nothing at all.
I have only slipped away into the next room.
I am I and you are you.
Whatever we were to each other, that we are still.
Call me by my old familiar name.
Speak to me in the easy way which you always used.
Put no difference in your tone.
Wear no forced air of solemnity or sorrow.
Laugh as we always laughed at the little jokes we enjoyed together.
Play, smile, think of me, pray for me.
Let my name be ever the household word that it always was.
Let it be spoken without effect, without the trace of a shadow on it.
Life means all that it ever meant.
It is the same that it ever was.
There is absolutely unbroken continuity.
Why should I be out of mind just because I am out of sight?
I am waiting for you, for an interval, somewhere very near, just around the corner.
All is well.

Harry Scott Holland, Circa 1900

Hello, this is Scott, Seth’s Daddy. Usually Ruthie, Seth’s Mommy, writes the journal entries. Tonight it is my turn.

I wanted to share with you the above. I found this in Ashley Davis Prend’s book “Transcending Loss”. Our wonderful friends at the Pediatric Oncology Support Team at St. Mary’s recommended the book to us.

The loss of our dear son Seth has been devastating. I did not think it possible that anything could hurt this bad. I still have trouble accepting his loss. Somehow I haven’t given up hope that someday he will come home. But this is normal, or so I have been told, and the acceptance will come with time. I know what happened. I know my son has gone to Heaven. Imagining my life without him is not easy. I was going to be there for him as he grew up. He was going to be there for me, as I grew old.

I don’t believe everything happens for a reason. There isn’t a reason good enough for any child to get cancer and suffer the consequences. My son Seth was a sweet, innocent little boy, just like so many other sweet little children that we met over the past several months who were also stricken with these dreadful diseases.

We have asked you to practice random acts of kindness. Do this because the world is randomly cruel and we must work to help offset the terrible things that happen to so many good people. Does God let these dreadful things happen? No, many things happen that are not according to God’s will. But He is there to help comfort us and give us the strength to carry this burden. He has also surrounded us with wonderful, caring people. God also grieves with us. He feels our pain. He knows the sorrow we feel. His son died, too.

These are very difficult days for Ruthie and me. It wasn’t that long ago that Seth was a happy, healthy little boy. It wasn’t that long ago when Seth spent his days at a wonderful preschool where he made many good friends. It wasn’t that long ago that on any given evening Seth and I were in the family room building a Thomas Train track, or reading stories or going for rides on his bike.

We are trying to work through our grief, at our own pace, in our own time. Hopefully we will be joining a bereavement support group soon. At this writing we still don’t know which one. If you have a suggestion, please pass it on.

Where do we find comfort? In you, the ones who care enough to check in on Seth’s website to see how we are doing. We find comfort in the friends who call us and are not afraid to hear us cry. Don’t be afraid to talk to us. Don’t be afraid to ask us about Seth. We will talk about our dear son. We often cry. We don’t deny our pain. There is a Native American saying that goes “Joy shared, is joy doubled, but grief shared is grief halved.” We thank all of you who have shared our grief.

The other place I find comfort is knowing that Seth, although he is no longer with us physically, really isn’t too far away either. I believe in God (I have a lot of questions for him these days) and I believe in Heaven. Seth has “only slipped away into the next room”. That is why I wanted put “Death is nothing at all” on the journal. The first line “Death is nothing at all” is a bit over simplified. The point however, is well made. Often I feel that Seth’s spirit is comforting me. He will live forever in my heart. Someday we will be together forever in Heaven. Knowing this gives me comfort.

So please stay in touch. The messages left in the guest book are of great comfort to us. Call us and, if we can, we will talk. Sometimes we need space but I think you can understand why.

Not everything happens for a reason. But we have to reason with everything that happens, including the bad things. Ruthie and I are trying to reason with the loss of Seth. This does not mean we are looking for answers as to why he got lymphoma, then leukemia and then the infections that his body could not fight off. We have to reason with how we are going to pick up the pieces, heal our broken hearts, get on with our lives, raise our daughter in a happy home while at same time honoring the memory of our son who we so desperately miss. Right now we don’t know all the answers. Right now it is difficult to just face the questions.

Thanks for checking in. Please perform a random act of kindness very soon. Let the people you love know that you love them. Pray for the children, and let’s all pray for each other.


Peace

Seth’s Daddy

Saturday, January 18, 2003 at 03:22 PM (CST)

"If you live to be a hundred, I want to live to be a hundred
minus one day, so I never have to live without you."
Winnie the Pooh


These days have proven to more emotionally difficult for us. We miss Seth so much. Reminders are everywhere. His room, the backyard, the tubby, his carseat, Publix, the mall, Barnes and Noble, grandma and papa’s house, his trains, St Mary’s……., it is like a head on collision with the past (and not being allowed to wear seat belts). It is difficult to face the questions those well-intentioned people want to ask. Isolation is probably the only way to avoid these emotional ambushes. But impractical and counterproductive. Life would not be any sadder than it is now.

One of the books refers to solitude as the “Garbor Factor”. This is when we simply want to be alone. No questions asked. “ People may fear that if you are alone, you are obsessing, worrying or contemplating who-knows-what.” But we need some time alone.

There is chapter in this book called “The Club”. I can’t help but think of Scott Finestone and the “Cancer Sucks Club” (info below). It is the club that no one wants to join. There is no rulebook and no one has ever been asked to leave for failing to follow the guidelines. It has the largest number of members and the highest membership dues. We choose not to be here but here is where we are.


“But grief still has to be worked through. It is like walking through water.
Sometimes there is an enormous breaker that knocks me down. Some-
times there is a sudden and fierce squall. But I know that many waters
cannot quench love, neither can the floods drown it.”

-Madeleine L’Engle




There Were Many Moments With You ...
(Just Not Enough Years)

A child is a gift from the Heavenly Father
that comes with many moments of love.
But what you think you'll hold for a lifetime,
may one day soar to the Heavens above.
Oh, now, I think back at the moments;
Precious moments I shared with you.
I think of the times that I heard you laugh ...
There's nothing to compare it to.
I think of the times you sat with me;
Sharing the dreams you treasure.
And sharing the failures that you feared most ...
Even these were moments of pleasure.
Every moment I shared with you was a joy!
So much more than you could know.
Just to hear each time your heart would beat ...
Meant one more beat to help you grow!
Tonight, I sit & hold onto the photo albums;
Holding onto every single minute.
I look back & long for more time in life with you.
For more life while you were in it.
I see others around me & know that they
understand exactly how I feel.
For every moment I live without you
is a moment too painfully real.
So, I sit tonight longing to hold you.
I just can't hold back my tears.
There were many moments with you ...
Oh ... Just not enough years.
~Author~
Kaye Des'Ormeaux
Copyright 2001 Kaye Des'Ormeaux



* The Finestones are the parents of Zachary “Zman” who is battling Neuroblastoma. Scott Finestone is the president of the “Cancer Sucks Club” (see website).
* www.caringbridge.org/fl/zacharyfinestone
* Please say a pray for Zman, Cam and their families. The families will be leaving for New York for special procedures dealing with their children’s Neuroblastoma. We pray they have a safe trip up, meet the goals they have set for the trip (that includes snow for Cam) and a safe trip home.


Wally
Tomorrow is his 72nd birthday. We are going to my folks tonight to celebrate. Although I am happy he is here to celebrate it, it breaks my heart to sing that song. Just thinking Seth will never be with us again to sing it to him.


Much Peace and love
Ruthie

Wednesday, January 15, 2003 at 09:46 PM (CST)

First, Thank You!, to all of you that helped find clothes for Amanda for her trip to Maine for Camp Sunshine. Laurie states they have enough now. You are more than welcome to continue to check in on Amanda and her progress. www.caringbridge.org/page/amandajo
She is also in Girl Scouts and will be selling Girl Scout cookies at the Blockbuster in Royal Palm Beach this Saturday from 11 to 1. So anyone out west, if you have a sweet tooth Amanda can help.

Next, Seth’s preschool invited us to the annual art show at the school. Scott and I both went tonight. Emily was sick. It was wonderful to be invited and AWESOME that they included some of Seth’s last works of art in the show. It was class work Miss Leslie had been sending home to us for Seth to work on after he was diag. They are truly an amazing group of people at RCCA. Seth was only there 8 months when was diag with cancer in June 2002. Some of you know the disastrous experiences we had at 2 preschools prior to RCCA. The teachers at RCCA surrounded Seth with love and patience. They worked with his “issues” and if at first they did not succeeded they would try and try again. They never gave up on him. We saw such changes in him, as did they. I think some of Seth’s success in dealing with chemo, being at the hospital and such had to deal with all he work and success from RCCA. We are so grateful to them. The staff is dear to our hearts. The art show was wonderful and was great to see all the children and their parents again.

Some sadder news Alexandria is not doing well. The Leukemia has gone to her brain. You can leave a message for the family at the link at the bottom of this page. The mother has put pictures of Alexandria on the site of her prior to diag.



TIME……….hmmmmmm seems to be the word everyone keeps throwing at us. “It just takes time”. Grief is a process it has not timetable.
We tell time differently now. If you ask just about anyone else when something happened they probably answer you with a certain day, month and year. We now find ourselves using the terms “that was before Seth was diag. or after he was diag. or after we lost him”.

Some of you may have been able to hear the music we are trying to plug in to Seth’s site. Eric Clapton’s “Tears In Heaven”. Eric Clapton wrote this song after his 4-year-old son fell to his death from a high-rise apartment complex. He talks about time.

“Time can bring you down, time can bend your knees.
Time can break your heart, have you begging….please……..”

Time in many ways is the ultimate gift to children with cancer. We were trying to “buy” time that last week of Seth’s life when he was in PICU. We needed “time” so his counts would go up. Time had us, just as Clapton put it…on our knees and begging please. Now we are broken hearted. Seth lost the battle with time.


There are some humorous stories in the book that I am reading. I will share one with you.

Ronnie’s son Teddy was speaking to his dead brother’s spirt:”Mickey, we miss you so much, we need you back with us. Please put your spirit into one of Papa’s sperms so you can be in our family again.” “But Teddy,” said Ronnie, foolishly attempting to insert some reasonableness into the conversation, “how do you know that the sperm Mickey puts his spirit into will be the one that gets to my egg?” “Mommy! Mickey is a good swimmer!”


Emily

She is doing well although I know she can sense the sorrow and stress in our little household. She has started stuttering. I know that some stuttering is developmental so we will just keep an eye on it or should I say an open ear.
She has been fussier and harder to get to sleep at night. She seems restless in her sleep. She seems to cry easier at things.
She is also sick again. She has a runny nose and a nasty cough.
She did a good number on her thumb the other day. She got her right thumb stuck in the fold down lid on our desk. She then lost her balance and fell. The entire nail was completely ripped out. A BIG ouch. I called Dr Schechtman. As long as the bleeding stopped and we kept it clean the nail will grow back. The bleeding stopped gave her Motrin for pain and we cleaned her up. Of course we went to Dunkin Donut and got a pink donut…it is what she asked for to make her booboo feel better.


Wally

Dad states he is getting his strength back. He looks better than he has in the past. His weight fluctuates. He was also diag. with Vertigo. He took a test the day after Christmas and found this out. He had to keep his head straight up for 24 hours following test. His type of Vertigo (there are many) has something to do with his inner ear and things in there. He is being treated for it (he goes to therapy one time a week). His back has been bothering him again and he has a CAT scan tomorrow (Thursday). He is really worried about this. Please keep him in your prayers. Mom feels he is doing better since he had his therapy.


See new photos


Much Peace and love Ruthie

Friday, January 10, 2003 at 08:00 PM (CST)

My Mom is a Survivor

My mom is a survivor,
or so I've heard it said.
But I can hear her crying at night
when all the others are in bed.

But like the sands on the beach
that never wash away...
I watch over my surviving mom,
who thinks of me each day.

She wears a smile for others...
a smile of disguise!
But through Heaven's door I see
tears flowing from her eyes.

My mom tries to cope with death
to keep my memory alive.
But anyone who knows her knows
it is her way to survive.

As I watch over my surviving mom
Through Heaven's open door...
I try to tell her that angels
protect me forevermore.

I know that doesn't help her...
or ease the burden she bears.
So if you get a chance, go visit her...
and show her that you care.

For no matter what she says...
no matter what she feels,
My surviving mom has a broken heart
that time won't ever heal.

~ by Kaye Des'Ormeaux
10/15/98
All Rights Reserved



Gooch’s mom Chris sent this to me (it is in the guestbook). It really touched me so I wanted to share and put it on the front page. ( www.caringbridge.org/page/gooch )
Thanks Chris!!!!!! Check out Gooch’s site, it is amazing.

We went to the Leukemia and Lymphoma Disney Marathon Team in Training Kick Off last night. There were so many people there. Palm Beach County has over 180 runners/walkers this year. It is a huge event. The Leukemia and Lymphoma Society from all over the United States participates. Seth is what they call an “honored patient”. The participants in the race have to each raise around $1800. Then they run/walk in honor of their patient. They had chosen Seth as an honored patient a number of months ago and when he passed away they were devastated. All the runners/walkers signed a jersey in honor of Seth. They each were given a small wooden star that they decorated themselves and will wear on their jersey the day of the race, which is this Sunday (01/12/03). After the event is completed they will pin the stars on the jersey that they had signed and give it to us.

It is great that they picked a star as a symbol for Seth because my sister Dori and her husband Todd and baby Shayn had a star named after Seth. They gave it to us as a Christmas gift. There is a company that does this and we have an official certificate. We will let you know where it is located once we find out.

Leukemia/Lymphoma Society gave us a wooden star as well and I put TNT (Team in Training) on it and will wear it on Sunday while the marathon is going on. Tina one of the wonderful PICU nurses whom cared for Seth and her sons are participating. They are not with Leukemia and Lymphoma Society but they are running in Seth’s honor. She asked me for a picture to put on their shirts. Also the jersey that each of the Team in Training participants are wearing the day of the race has Seth’s name on the back of it. It says “doing it for Seth”. Well, while we were there last night Scott and I were each wearing a button with Seth’s picture. People asked for them to wear during the race. Of course we gave them to the first 2 people that asked. Then others wanted to know if we had any more at home. We had only a few, so Scott and I went home and made about 200 more to send up with Michelle (from L/L) for the event. Our friend Vesta is also walking on her own for the event. She asked for a picture as well to wear.

Scott and I are going to join the Team in Training. Scott will cycle and run and I will walk. We are working up for next year’s Disney Marathon. So all my wonderful friends out there we will be calling on you for support.

We will also be doing “Light The Night”. That will be in September of 2003. We will be walking for “Team Seth”. We will have our own T-shirts with a special logo. We will sell them to help raise money. You can donate money or raise your own funds and walk with us (don’t listen to Marissa, Brenda or Stephanie …it is not 10 miles).

We are still looking in to support groups. We have an appointment the end of the month with Hearts and Hope (Bereavement). The only thing is Emily is too young for the sibling groups. They have groups for the 3 – 5 year olds, 6 – 9 years olds 10 – 12 year olds and then 13 – 17 years olds. Then of course the adult group. If anyone is interested in their services the number is 832-1913. We also have an appointment with Hospice next week. Not sure what they have to offer but I understand they do have a playgroup for Emily. We will check them both out and see which works best for us.

Well my friends that is about all for today. Please note Alexandria’s site below..she is critical and needs lots of prayers. Check out her photo album…the first one is my favorite.

Please remember all our friends that in the Disney Marathon this weekend. We pray that they have a safe trip up there, they accomplish their goal and have a safe trip home. Remember they are doing it in Seth’s memory.

Thank you also to all the wonderful friends who have said that they gone out to visit Seth when they are out “west”. We really appreciate it and means a lot to us. We are still waiting on his marker.

Peace, Much love and God Bless
Ruthie

Wednesday, January 08, 2003 at 09:10 PM (CST)

Remembering Seth

REMEMBERING
Go ahead and mention my child
The one that died, you know.
Don't worry about hurting me further.
The depth of my pain doesn't show.
Don't worry about making me cry.
I'm already crying inside.
Help me to heal by releasing
The tears that I try to hide.
I'm hurt when you just keep silent
Pretending he doesn't exist.
I'd rather you'd mention my child
Knowing that he has been missed.
You ask me how I'm doing
I say "Pretty good" or "Fine."
But healing is something on-going
I feel it will take a lifetime.
Elizabeth Dent


Selecting Seth’s little casket, arranging his services, picking out what clothes he would wear, and greeting hundreds of people at his services…that was the easy part.

Remembering is the hard part. Remembering “what was” and thinking about “what could have been”. The book that I am reading suggest that some people are afraid to talk about a child that has died for fear of bringing up memories for the grieving parents. Living with the memory is part of the healing process.

I know people are at a loss for words…. What do you say? After all the death of a child is the ultimate loss. It is the worst pain. It is extreme almost intolerable stress. But words are all we have to offer anyone but no words can equal the loss.

Remembering the past, when he was healthy, when he was first diagnosed, when he had his seizure, when he had hair, when he went in remission, when he relapsed, when he went in to PICU and when he died.

There are some that think we should “get on with it”. But in reality healing from the death of a child is a life time process as we face birthdays, holidays, anniversaries of events and other reminders. So many of our hopes and dreams died with Seth. Waking up in the morning (that is if we were able to sleep) to the agonizing reality that Seth is no longer with us. We lost that chance to watch him grow and reach his greatest potential.

I remember that last Friday morning before Seth left us. Whenever Dr Gowda would come to PICU to check on Seth he would talk to him and it almost seemed he expected Seth to answer him even though he was on a ventilator. That morning he came and said “Seth are you listening to me (his voice broke a little) all I want is to hear your sweet voice”.

I remember Scott giving him to me to hold for the last time for his last breath as I remember holding him when he was born and took his first breath.

I remember his love for trains, his love for pink donuts (no sprinkles please), his love for his buddy Trent, his love for his grandma and papa, his love for french fries, his love for his mommy and daddy, his love for Emily, his love to read books at night by flashlight with his daddy…

I remember his Love!

I feel blessed, honored and loved that “I” was the person who got to be his mommy during his short time here with us!



When?
God, I need to tell You
Though I know You already know
How deep is this hurt inside me
This ache in my very soul.
I feel so deeply wounded
My heart is torn, laid bare.
Part of me died with Seth
When will I start to care?
To hold him in my arms
To hug him one time more
Is all that I desire,
Is what my heart longs for.
My mind is whirling, thoughts askew,
It's hard to concentrate.
They say You're timing's perfect
Never too early or late.
Give me assurance You're still in charge
My faith's been shaken sore.
Rebuild my life -- I know it's changed,
The same I will be nevermore.
--Elizabeth Dent.

Peace and much love
Ruthie

Monday, January 06, 2003 at 09:15 PM (CST)

Hello friends…

Ok, we don’t have music on Seth’s website like some of the other sites so do me a favor and starting singing (out loud). I know you know the song….

I’ve been working on the railroad
All the livelong day.
I’ve been working on the railroad
Just to pass the time away.
Can’t you hear the whistle blowin’
Rise up so early in the morn
Can’t you hear the captain shouting
Dinah blow your horn.

Keep going you are doing great…

Dinah, won’t you blow
Dinah, won’t you blow
Dinah, won’t you blow your horn?
Dinah, won’t you blow
Dinah, won’t you blow
Dinah, won’t you blow your horn?

Someone’s in the kitchen with Dinah
Someone’s in the kitchen, I know
Someone’s in the kitchen with Dinah
Strummin’ on the old banjo

I typed all this so you have to finish singing..

And singing
Fee fie fiddle-I-o
Fee fie fiddle-I-o-o-o-o
Fee fie fiddle-I-o
Strummin’ on the old banjo.

Thank you and hope this tune gets stuck in your head and you think of our little Seth!!



I had mentioned before Scott and I are both reading books dealing with the loss of a child. We have decided to switch when we are done. There are a couple of inspirational books that have daily readings which we both share. We are still looking in to support groups.

The book I am reading has a number of chapters with titles that are suitable. It is helpful (so far). It would probably help others to understand (however I don’t think that is ever possible). Unless YOU lose a child the feeling is unexplainable. Even when 2 families whom know each other lose a child the feelings will be different. The healing time will be different. Kathy Charlton shared this to me shortly after we lost Seth and it is true.

Death makes most of us uncomfortable. However “ a child’s death is a loss to the nth degree”. It is beyond being uncomfortable. It is the worst pain. This is not how things are supposed to happen. Children are supposed to outlive their parents. The world as we know it is now backwards, upsidedown..just not right. We constantly question “why” and it leaves us feeling emotionally and physically exhausted.

There is a chapter on courage. It stated that “Courage is forgetting yourself and focusing only on the fight. Courage means reaching beyond the limits you thought you had to strive for some greater purpose.” In the case of our child with cancer the greater purpose is survival. I think about Seth and his courageous fight. Each breath he took up in PICU that final week was a victory to us in his fight. I think about all the procedures, poking and prodding he went through, with courage. There were times he would get so upset and all we had to say to him was “Seth what do you need to do?” and he would respond “calm down”….and he would. We would tell him what needed to be done and he would respond “ok”. He might not have liked it but he did what he needed to do. He was only 5 years old and yet he had the ability to comprehend better than some adults. It took a lot of courage to fight that final fight when the odds were against him.
He is our courageous little hero.
He is “the little Seth that could”.

People have told us that we are “courageous”. However I don’t see it as courage but as LOVE. I think we took the health and the love for our children for granted (thinking it would always be there) until we were faced with losing Seth. When we found out Seth had cancer we would have done anything to save his life. It is also selfish in a sense that we wanted to have him with us forever no matter what the cost. We were ready to go to Duke and have Emily’s bone marrow used as a possible donor. However in the end what was best for Seth was not what we wanted but what was best for Seth.

Chugga Chugga Choo Choo Seth!
We Love You!

Peace
Ruthie

Saturday, January 04, 2003 at 05:16 PM (CST)

Hello Friends…

First, let me say one thing …just because we lost this battle we HAVE NOT GIVEN UP THE FIGHT!!!!!! We have been tremendously wounded but we have gone back to the battlefield!! We have JUST 2 reasons to keep fighting this monster called childhood cancer, #1 the loss of our sweet Seth, and #2 for EVERY child that has ever stepped foot on that O2 floor at St Marys or ANY other hospital that treats kids with cancer.

Scott and I went to the Leukemia/Lymphoma “Team in Training” kick off today that was held downtown. It was very difficult to be there but we wanted to be there. They had a great slide presentation. There was a wonderful picture of Robert followed by one of Seth. They spoke about the boys. We did all we could to hold ourselves together. They commended us for being there but there is where we felt we needed to be. We saw some friends and made some new ones.

I have decided to write a bit in these journal entries about the “healing process”. It is a process and not an event. First, we are still very connected to the Pediatric Oncology Support Team (POST). For the year to follow Seth’s death they will send us information regarding bereavement and be there for us. They have also given us books to read and support groups to check out. They made it clear that everyone grieves differently and at a different pace. My understanding that we should allow ourselves 1 and ½ to 2 years to get to a point where remembering is not so overwhelming as it is now. Living with his memory is part of the healing. They said the “first” everything (holidays, birthdays…) without him will be difficult.
The books we are reading are helpful. In one of the books it refers to a parents’ bereavement support group as “the club with the highest membership dues in the world”. I thought that was very fitting. The loss of a child is truly the ultimate price to pay. I will up date as we move on.

We have been out to the cemetery a number of times. We are trying to select Seth’s headstone (or to be more correct “marker”). Scott and I took a stroll through Queen of Peace cemetery trying to get an idea of what we wanted. YES, IT WILL HAVE A TRAIN ON IT…THAT IS A GIVEN! However trying to find the words and pictures that pay tribute to this beautiful little boy who was the light of our lives and touched so many others is an overwhelming task which only we could do. There is so much we wanted to say about him and to him. They only give you so much space on those markers. We are getting some help from those angels at the Pediatric Oncology Support Team. We sent in our initial idea and should get a draft of what it will look like in couple of weeks (to see if it is what we wanted).

See new photos



“Blessed are they that mourn, for they shall be comforted.”
-Matthew 5:4


Much Peace and Love
Ruthie

Sunday, December 29, 2002 at 09:55 PM (CST)

Hello everyone….

Christmas and Cancer are two big “C” words. They don’t go together. Christmas is a beautiful holy holiday. It should be full of love, fun and joy. Cancer just sucks the joy out of a holiday. Instead of watching Seth open his Christmas presents this year we visited his grave. This not the way we ever thought we would spend Christmas. Because of cancer, we will not get to see him lose his first tooth, attend his first day of Kindergarten, learn to drive a car, go to college, get married or have a family of his own. Cancer robbed Emily of her big brother. Cancer took our Seth a nephew, a cousin and grandson from our family.

I want to talk about New Years Resolutions (not sure how to make the connection with the above but humor me). Raise your hand if you have made New Years Resolutions in the past (like to lose weight, save money, stop smoking…) and never made it to the end of the year…or even to end of the month. OK I see lots of hands up out there. We have come up with a few that anyone can keep. They are easy and simple. We will call them Random Acts of Kindness (sounds nicer) rather than Resolutions. Just about everyone has said to us “if there is anything we can do to help you please let us know”. WELL if you do one of these things you will make us smile. If you do several you will be helping others and us.

1. If you have children hug them a little bit longer and kiss them alittle more often. Spend extra time with them, the laundry, the lawn, dirty house and paperwork and so on can wait. Time with your children is precious and tomorrow is uncertain.

2. Pray for our friends Ryon, Zachary, Cam, Justin, Kyle P., Autumn, McKenzie and Alexandria

3. Donate blood and platelets to your local blood bank and tell them you want it to go to St Mary’s Pediatric Oncology floor (or your local hospital that treats children with cancer). Seth had to have several transfusions those last few days. Platelets are very much in demand for these kids and often hard to get.

4. Pray for our friends Jessica, Genna, Timmy, Mitch, Lindsay and Amanda.

5. Donate money to the Pediatric Oncology Support Team (561-882-6336). Annette, Barbara, Sandy and Terri are wonderful. They did so much to help our family (and still are) and so many others.

6. Pray for our friends Gooch, Amiee, Cici, Leanne, Tiffany, Hillary (there are so many more).

7. Support Scott and I in the September 2003 /Leukemia and Lymphoma “Light the Night Walk”. We will be walking for “Team Seth”. You can even raise your own money and walk with us. We had hoped that Seth would walk in this up coming one and carry his white survivor balloon. (561-775-9954)

8. Pray for the families of the children that have passed away…. Seth, Robert, Gabbie, Justin, Kyle C, Quito, Matt H, Kristin, Jamie

9. Get involved with other childhood cancer events through the Leukemia and Lymphoma Society. Scott is joining “Team in Training” and will be doing bike-riding events. (561-775-9954)

10. Pray for all the children who are in remission that they remain there forever!!!

11. Visit other children’s Caringbridge sites and leave supportive messages for the families. We REALLY appreciate it!!!! Some of our friends out there have left messages on Robert’s, Cam’s and Genna’s …a BIG Thank You!

12. If you want to help other families with children with cancer (cancer sucks the life out your bank account too) Contact the Pediatric Oncology Support Team (561-882-6336) They are always looking for donations of food, money, gift certificates to local food store and so on to help local families.

13. If your children are healthy …CELEBRATE IT…each and every day!!!!!

14. Pray for all those who work with children with cancer. They are wonderful and dedicated people. It is a calling not a job (as Barbara Abernathy puts it).

15. Donate money to www.caringbridge.org . It is a not for profit agency that sets up these websites free for families with loved one with illness and disabilities.


16. Get on the National Bone Marrow Transplant list at your local blood bank…a big undertaking…but you could save a child’s life.

17. Pray for our family that we will heal “well” as Scott put it. We should be starting the Hearts and Hope program soon. We need something.

18. Finally pray for a CURE of all childhood cancers.

See, not so hard to do several of these and be successful. Let us know how you do. I bet each and everyone will be successful in your “Random Acts of Kindness”. You have already shown that you are wonderful and supportive friends in everything you have done for us over these last several months.

We have added some of our favorite photos of Seth to the site…check him out!

PEACE, MUCH LOVE AND HAPPY NEW YEAR!

Ruthie, Scott, Emily and from heaven Seth

Tuesday, December 24, 2002 at 07:45 PM (CST)

It is Christmas Eve…

The house is noticeably quieter this year.

Emily has been sick. She ran a temp of 102.2 last night. We called and spoke to our wonderful Dr Schechtman at about 1:30AM. He gave us some things to do and said to bring her in at 8:30AM. We brought her in and it seems to be a common cold. She has been running a temp on and off all day. We did not take her to Christmas Mass, Scott stated home with her.

My church seems to be a place I have a harder time holding my self together and tonight was no exception. The past several Christmas services we have sat in the back as a family with my friend Justine. Justine has a little boy named Justin about Seth’s age and twins who are a little older than Emily. I sat up front with my mother and father this year. When Mass was over and we were walking out I saw my friend Justine. We looked at each other, hugged and started crying.

We took Emily to get her picture taken at the mall with Santa last night. Even though she was not feeling well we still wanted to do the picture because that is what we have done in the past. It was very emotional. I cried watching Emily sitting all by herself on Santa’s lap. Seth should have been next to her.

Emily will open presents from Santa tomorrow morning. We go over to my folks for breakfast. Scott and I will spend some time out at the cemetery and go back to my parents for dinner. I feel it will take everything we have to get through the day.

We are still sending out our Christmas letter …it will be alittle late for some of you. I needed to order some more photos; they will be ready on Thursday. If you want a letter and/or photo and you don’t get one by the end of next week email me. We had trouble reading some of the handwriting in Seth’s guestbook.

Sending out Seth’s photo helps me in some way……I guess I feel like it will help people not to forget him.


Our friend Tom sent this poem…I know it is in the guest book but we felt it deserved the front page. Thanks Tom. You are wonderful.


My First Christmas in Heaven


See the countless Christmas trees around the world below,
with tiny lights, like Heaven's stars, reflecting on the snow.
The sight is so spectacular, please wipe away the tear,
For I am spending Christmas with Jesus Christ this year.

I hear the many Christmas songs that people hold so dear,
But the sounds of music can't compare with the Christmas choir up here.
I have no words to tell you, the joy their voices bring,
For it is beyond description to hear the angels sing.

I know how much you miss me. I see the pain inside your heart,
but I am not far away. We really are not apart.
So be happy for me dear ones. You know I told you dear,
And be glad I'm spending Christmas with Jesus Christ this year.

I send you each a special gift from my heavenly home above,
I send you each a memory of my undying love.
After all "love" is the gift more precious than pure gold,
It was always most important in the stories Jesus told.

Please love and keep each other, as my Father said to do,
For I can't count the blessings or love he has for you.
So, have a Merry Christmas and wipe away that tear,
Remember, I am spending Christmas with Jesus Christ this year.

Tom
Kill Devil Hills, NC - Tuesday, December 24, 2002 at 05:13 PM (CST)

Please say a prayer for Ryon Rommel. He has leukemia and is one year post bone marrow transplant and is having graft vs. host disease www.caringbridge.org/fl/ryonspage


Be sure to check out the photo of Emily with Santa

Peace to all of you and Merry Christmas
Ruthie

Sunday, December 22, 2002 at 09:19 PM (CST)

Hi everyone…
Well Christmas is almost here. Santa filled Emily’s wish list. Some wonderful elves from WPBF Ch 25 helped Santa. We started our shopping yesterday…not really in to it. It really hurts in words I can not express that Santa could not fill Seth’s wish list. Santa and Mrs. Claus have shed a lot of tears over that issue. There are so many things Santa wanted to bring for our little Seth. We donated some toys in his name and that was nice all that good stuff but it is not the same thing. The days are getting harder emotionally as Christmas gets closer. Scott and I are holding ourselves together for Emily. She gives us reason to celebrate the holiday. We bought Seth a small live tree and decorated it with little train ornaments and put out at the cemetery.
Although Emily makes enough sounds for more than one child there is still a since of emptiness and silence in our home that will never be filled.

I am including an article from a web site used by the broadcast industry. It talks about Seth and how WPTV Ch 5 helped out Scott’s station WPBF Ch 25 on the day of his funeral. It also talked about the General Manager of Scott’s station Viki Regan and how she wanted her employees to be able to attend Seth’s services and ratings for the day was not her first priority. She is a wonderful person. I want to say Thank You to both WPBF Ch 25 and WPTV Ch 5 for their support during this difficult time.

TV newscasts Take Off Gloves In Time Of Need
By Bob Betcher
http://www.tcpalm.com/

In a rare example of inter-station cooperation, the news department of WPTV (West Palm Beach) last week helped rival WPBF produce two of its newscasts while staffers attended the funeral of a station employee's 5-year-old son who died of cancer.

"I don't care if we put color bars on the air, I wanted our people to attend the funeral," WPBF General Manager Viki Regan told her staff.

Seth Bunkelmann, the 5-year-old son of longtime WPBF Executive Producer for Production Scott Bunkelmann, lost his six-month battle with cancer the day after Thanksgiving.

Upon hearing WPBF's plight, WPTV offered to help cover for its rival.

"WPTV called and said they wanted to help," WPBF News Director Joe Coscia said. "I called up (WPTV's News Director) Peter Roghaar and told him I was going to take him up on his wonderful gesture."

The stations are normally bitter rivals, especially in local news.

Coscia said virtually all employees in the WPBF building in Palm Beach Gardens attended the service. "A couple of people stayed behind to keep the station on the air."

Hearst-owned WPBF thanked West Palm Beach-based WPTV on the air at the conclusions of the 5 and 6 p.m. newscasts, Coscia said.

WPTV, a Scripps-owned NBC affiliate, said it was only too happy to help.

"We shared our stories and video with WPBF to allow for as many of their staff as possible to attend the funeral and not have to worry about covering news that morning," Roghaar said. "We feel fortunate we were able to help out in some small way."

Coscia also expressed his gratitude with a note to the WPTV staff, Roghaar said.

WPBF, an ABC affiliate, has set up a fund to help the Bunkelmann family. To donate, call WPBF in Palm Beach Gardens at (561) 694-2525, Ext. 220


Peace Ruthie

Thursday, December 19, 2002 at 10:24 PM (CST)

Hi everyone…
For those who did not know we got out of town for a few days. We talked about it for awhile and with the help of my sister Dori and her husband Todd we went to Seth’s favorite place in the world …..Disney World.
We took “wild woman” and left on Monday morning. We went with mixed emotions. It was a very difficult and different trip. When we use to go up about an hour before we get there Seth would repeat over and over and over “where is the Disney sign…I need to see a Disney sign”. It use to be very nerve racking. I missed it this time because no one cared about the signs.
Whenever we took Seth to Disney World, he pretty much set the agenda. There were things he loved to do and couldn’t get enough of (riding the monorail or watching the trains at the Germany Pavilion in the Epcot.) He also did better in Epcot because it was generally quieter than the other parks. He refused to do most of the rides, or he would try them once and not enjoy them at all. He did like some of the shops because there was always something in there “he needed”. Even though there were so many things at the parks that he wanted nothing to do with, he still loved going to Disney World. He knew what he likes to do and see and was very happy to do a few things over and over again.
Emily on the other hand is our “thrill seeker”. If anyone has been to Animal Kingdom and been on the Safari Ride you know it is bumpy and fast (at times). She loved it. Unlike her brother, Emily will go on just about any ride although waiting in line is not her favorite pastime.
Disney World is supposed to be the “happiest place on earth.” We went there knowing that this would not be our happiest trip. Disney World vacations have always been a part of lives together. We spent our Honeymoon there and for the past five years we have taken vacations there during December to enjoy the festive, holiday atmosphere. This year we knew that at times we would feel miserable. But right now, there are times we feel miserable regardless of where we are. We have so many fond memories of taking Seth to Disney World and how excited he would be about his trips there. At times over the past few days we were very sad. But Disney World trips is part of who we are and we want Emily to have as many chances of having fun there as Seth did. Perhaps our next trip there will be easier, but every time we go there we will be reminded of the wonderful fun Seth had at the parks.
It is now Thursday evening. We just got in a couple of hours ago so I need go unpack and start laundry. We will update more later.
Peace Scott and Ruthie

Wednesday, December 11, 2002 at 10:14 PM (CST)

Hi everyone…..

First the BIG news:

WELCOME BABY GIRL SHAYN NICOLE NEARY 12/10/02 7lbs 14oz 21 inches at 8:01PM

She was born via C-section, not my sister’s choice. Shayn did not want to leave the warm safe environment she was in. Can you blame her? She is beautiful and I mean BEAUTIFUL! Mommy and daddy are very proud. Daddy could easily recite to the nurse the last time she ate, for how long and how many dirty diapers she has had. She really looks like both of them. Dori had a long and difficult labor. The Dr even tried the vacuum and that did not work. The new mom and dad looked very tired but happy. Holding her brought back a lot of memories for me. Emily did not know what to make of the new baby.

A BIG and I mean a BIG thank you to John Vighetto a WONDERFUL man from our church that spent 3 days with us fixing our computer. It blew up and I mean blew up. He knew how important it was to us with everything we have been through with Seth and updating his website. I really enjoyed John’s company. He is a sweet man and I could tell a proud dad. Emily who usually takes awhile to warm up to someone had no problem getting in his lap and snuggling in. Kids can sense special people. I was really touched by his warm, caring and spiritual being. He has his own company (or as he put it he is chief cook and bottle washer) CADGRAFIX INC.

We attended a beautiful prayer service today at St Mary’s. The wonderful folks from Oncology put it together. The Charltons were also there. They honored both of our boys. It was very emotional and moving. At the end of the service friends and family could get up and speak about the boys. The things that they said about Seth and our little family will stay with me forever. Scott also stood up and said some wonderful things about the hospital, the doctors, nurses and support staff. He talked about Seth’s love of trains and how he moved people just like a train moves other train cars. He talked about Seth’s sweet smile and how he looked at everyone there at the service and it made him smile. I was so proud of Scott! St Mary’s and everyone associated with that hospital has truly been a blessing to our family.

The days following Seth's funeral have proven to be MUCH more difficult than we ever expected. Barbara Abernathy said the “first” of everything we use to do would be difficult. So if you want to know where my head is at these days you might want to check with someone from the P.O.S.T team. They seem to know its whereabouts. I sure don’t know at times.

We decorated the Christmas tree last night and it was overwhelming. All the ornaments with Seth’s name on them just brought me to tears. It feels like cancer is the real culprit in the story “The Grinch that Stole Christmas”. But cancer will never get a big heart (like in the story) and give us our Seth back. Yes I know the real meaning behind Christmas……but I am being selfish and wanting things the way they were before. We miss our sweet little boy. He so enjoyed Christmas.

As I said before we will be sending out a Christmas letter, which I will also post to the web site. We will include the last picture of Seth and Emily together. If you want a copy or a copy of the picture at the top of Seth’s web site please send your address to my email below. I might have lost some info when the computer blew its lid so if I did not respond to your email you may have to send it again.

Dad
OK he scared the pageebers out of us the other night. Since Seth’s funeral was on Wednesday of last week (the day dad normally gets his chemo) dad’s chemo was changed to this Monday 12/09/02. He went in everything was fine. Brain MRI showed nothing abnormal …Thank you God!!! His counts were good. However after they got home dad started having chest pains…here we go again. He told mom to call 911. I was at Dori’s (it was about 4:00ish). Mom called Cindy Martinson (wonderful friend and neighbor …I swear she and Bill have angel wings under their shirts) and she came down. They took dad to Good Sam and Cindy took mom and stayed with her. They feel it was a false alarm and kept him overnight to run test. He came home early the next day. He went with us tonight to see his newest granddaughter. He seems to be doing better. He is still weak but wanting to go for walks, play on the computer and eating.

Check out the new photos

Thank you for checking on us, your love and support
Peace and lots of love.. Ruthie

Saturday, December 07, 2002 at 10:38 PM (CST)

Hi friends,

Many of you have asked us to continue with Seth's website in order to know how we are doing, how my dad is doing and finally did Dori and Todd have that baby yet? We will continue to do updates.
No, no baby "Neary" yet. Dori will be induced on Tuesday morning if the baby does not come sooner. We will put a picture on the website. We know it is a girl. We don't know the name...it is a secret.
Dad has his good days and bad ones. He mainly complains of dizzy spells. His weight is down again. He seems in better spirits the last few days. Mom is taken him to his Dr appointment on Monday. They should find out the results of the brain MRI at that time.
We got through the services in one piece. The following days have been very difficult. I keep expecting Seth to come out from his room. Or when we are in the car turn around and find him in his carseat. Everywhere we go in the house we have reminders of Seth. Sometimes we smile, alot of times we cry. I just started emailing with a mother who lost her daughter to cancer in May 2002. I have found it to be helpful.
We have made a few trips to the cemetry to visit him. What can I say but our hearts are broken.
We went to the mall today for the first time to get some extra pictures made of him and Emily. He loved going to the mall. It was so hard being there with out him.
We are going to send out a Christmas letter(we will post it on the website) with a picture of Seth and Emily. If anyone wants a picture and you don't think I have your address, please send it to my email at the bottom of this page...do not put it in the guestbook.
As many of you know Seth LOVED to get mail especially if it had stickers or pictures in it. We are looking forward to getting Christmas cards (some with pictures)and remember how Seth use to like to open them.
The holiday season is difficult for our little family this year. I thought I could just go through it to get through it but don't think I can. We are trying to get through it for Emily.

Thank you for your continued support and prayers
Ruthie

Saturday, November 30, 2002 at 08:43 PM (CST)

Hello friends and family,

This day has been very difficult for our little family. The drive home to our house with out Seth was heartbreaking. I think about the early morning hours of this day when Seth left us and I was able to hold him in my arms when took his last breath as I did when took his first ones at his birth. It is a blessing to know that he is at peace, happy, smiling and in no pain. We are the ones in pain at this time because our hearts are broken since he is no longer with us physically. He will always be a constant smile in our hearts. And, like his daddy said there are now toy trains in heaven. Chugga chugga choo choo Seth!!!

We could never thank everyone enough for all the support that has helped us through this difficult time. Support has come in so many forms from so many people. We will always be grateful.

Seth's obituary should be in Sunday and Monday's Palm Beach Post.

Services are as follows:

Visitation will be at Quattlebaum Funeral Home in West Palm Beach from 5:00 to 8:00 PM on Tuesday evening December 3,2002.

Funeral Services will be at Holy Name Catholic Church in West Palm Beach on Wednesday morning December 4,2002 at 10:00AM. He will be buried at Queen of Peace Cemetery on Southern Blvd. A reception will follow back at Holy Name Catholic Church.

Please continue to sign his questbook as we will keep it up for another week or two. There will also be a LifeFiles Remembrance Registry set up by Quattlebaum Funeral Home details will be in the newspaper.

Peace and love
The Bunkelmann Family
Ruthie, Scott, Seth "Trainman" and Emily

Saturday, November 30, 2002 at 02:10 AM (CST)

Seth,our very special little boy, passed away peacefully just before 1:00AM on Saturday, November 30,2002.
He was brave and strong. He fought a good fight but the complications from the infections were just too much.
He touched many lives. He was very loving and very loved. Now he is in God's arms and we know that there will be trains in heaven.
Funeral arrangements are still pending and will posted on this website.
We would like to thank everyone for the wonderful messages you have left in his journal and most of all for your prayers, support and love.

Ruthie, Scott, Emily and Seth the "Trainman"

Friday, November 29, 2002 at 09:05 PM (CST)

Hi everyone……

Another very scary day with Seth…we nearly lost him. Still no ANC. The day started with Seth looking puffier. Dr Bufo came in and said that the cultures from Seth’s belly are still coming back negative. YEAH! However if he does not get a decent ANC (above 500) by Sunday or Monday he will have to do surgery. He seemed more positive. However during the day Seth’s levels that shows the oxygen in his blood were dropping. They felt because of the fluid that was also in his lungs he could not take a deep enough breath even with the ventilator. It was decided to take him downstairs to try drawing out some of that fluid. Let me tell you what it took to get that kid downstairs in his bed with oxygen and his multiple IV poles. They had to hand vent him. There were 2 PICU nurses, John the respiratory therapist, a transporter, Dr Pena and myself. It was a major production. They had to hold Seth in sitting position and go through his back to get to his lung. They took out 300cc of fluid. He seemed to breathe better by the time we got back to his room in PICU. BUT because the heart was kinda being squished over because the fluid and it finally had all the room it needed his blood pressure started falling. I was moved out of the room and everyone went to work. If I ever saw some great folks at work they were in that room. They needed to put in a bigger breathing tube but because Seth was so swollen Dr Pena was having some trouble getting it in. His present tube was too small and air was escaping. Dr Pena has no problem asking for back up and he did. They got it in. They also put in a central line in his groin to keep from hitting his little veins so much. They are giving him meds to help raise his blood pressure. They also put him under a warmer because his body temp was too low. They finally got him stable. He is still a very very sick little boy. I had called Scott when I had to leave the room and my wonderful sister brought him up. He was at my mom’s with Emily and my sister. I truly thought we going to lose Seth at this point. It was more than I could bear. The nurses also called for support for me. They contacted the 2nd floor and nurse Peggy came up. Barbara Abernathy also dropped everything and came back.
Because of all the equipment in the room we can no longer sleep in the room with him. The nurses are wonderful and made other arrangements for us to sleep close by. Scott is staying the night and I came back to my mom’s to be with Emily. I needed to hug her.
Our little Seth engine is still chugging along. We know he can do it!!! We have some special people who are part of our support team at the hospital who will let us know when it is time to let Seth go. We don’t want to extend his life just to live on machines. They are saying he is not at that point. Pray for us!
It has been another emotional roller coaster day.
Please no visitors.
I will try to up date the web site at night or when I can.
Thank you for your continued support, prayers and love
Peace to all of you
Ruthie

Thursday, November 28, 2002 at 09:54 PM (CST)

Happy Thanksgiving dear friends….

The day started off well. Seth was still holding his own. His swelling had gone down in his face. He looked much more like Seth. His belly and arms were still puffy. Dr Schechtman met us at the hospital in the morning. He felt Seth had a lot of good signs that he was holding his own with no need to rush in to surgery right now. Dr Gowda came by and said the same thing. He said he missed hearing Seth’s little voice. Both Drs are concerned about the fluid in Seth’s belly. Dr Bufo came by later and said they (he spoke with Dr Gowda and Dr Schechtman) wanted to “tap” Seth’s belly to get a culture of the fluid. If the fluid had bacteria in it Seth would need surgery right away. This would mean that his bowels perforated. If the fluid were negative it would buy Seth a few more days. Since Seth’s belly is not going down and he is putting out urine they are trying to figure out what is going on. Dr Bufo saw problems on the sonogram in his intestines that the infection is causing. HOWEVER if he can get that ANC of 500 things would turn around.
We agreed with the belly tap. Dr Bufo reminded us that if he had to go in to Seth’s belly because something in there was dying the survival rate was very low 5 to 7 %. However with out the surgery survival is 0. We had to wait an hour before the belly tap because Seth needed platelets. He has had a lot of transfusions lately. The belly tap itself only took about 15 minutes. It was done in his room with a radiologist and a Dr. The fluid would be sent to the lab for a quick study and we would know with in an hour if Seth were having surgery today or not. That 2 plus hours was nothing but pure hell. Scott and I could barley hold ourselves together. We cried a lot together. We kept saying “all’s we want is to be a family of 4”. The day started off with Seth looking better and now we thought we might lose him before the day was over. Tina who was our nurse for the day (she was great!!) said if the lab called and said it was negative she would come and tell us. If it came back positive we would get a call from Dr Bufo. Scott and I waited the hour and Tina came in to the room and said “good news, it is negative”. THANK YOU GOD!! This culture will also be allowed to grow and may show something later. He is still very critical. He is still on the breathing machine.
We were so grateful for all the prayers out there for our little guy. We still feel very strongly that he will pull through. Thank you to all the wonderful friends at St Mary’s Child Development Center for the mass you had for him on Wednesday. I know you had candles and some of you used them tonight on your Thanksgiving tables. Thank You!!!
Seth just needs that ANC of 500. He still also needs platelets. He has had so many transfusions.
He is “The Little Blue Engine that could”. Thank you to the nurses on the 2nd floor who made him the poster of the train that said “ The little Seth that could …we know you can”
Yes…we know he can and so does he!

Thank you, peace, prayers and lots of love
Ruthie

Wednesday, November 27, 2002 at 09:08 PM (CST)

Hi Friends…

I just checked the web site before writing this and WOW!!! The love and prayers are just flowing. I was so amazed at the entries from all over the place. It really gave me a lift when I needed one. I may not know all of you but I am so glad that you are checking in on our little brave trainman!!

Things got a bit more serious today. Scott called me at 7:15AM (I have been staying the nights at my parents with Emily) saying they were putting Seth on the ventilator (breathing tube). The plus side of this is it gives his body a rest. He was getting so tired. The down side is you generally always develop pneumonia when on a breathing tube. They are keeping him heavily sedated while he has the breathing tube. His vitals have been stable and pretty much in the normal range. He is an amazing little boy! He is putting out more urine…yeah! The main problem is still no ANC. He needs the magic number of at least 500. A healthy person is well over 2000. We had long talks with all the Drs today. The bottom line is Seth needs to have that ANC with in the next 24 to 48 hours (possible 72). IF not the infection in his intestines will get the better of him and his organs will all begin to shut down. There is a surgery that if his ANC does not kick in he could have however the survival rate is only 5 to 7 %. It has been a long and emotional day. Poor little Seth has been through so much. We feel so strongly that he can do this and he will be the “Miracle on 45th Street”.
You may not know what ANC is or how it relates but please pray and or send positive thoughts that he gets those white blood cells to make that number. This is what he needs to survive.
We are very thankful to the wonderful nurses on the PICU floor who have been very supportive and on top of everything. Jessie was our nurse today and she was amazing!!! We are also very thankful for the Pediatric Oncology Support Team and being there and supporting us. You are wonderful people. Thank you to all of the wonderful folks from the 2nd floor for coming up and checking on us. We miss you all!
Seth is an amazing little kid! If anyone can pull through this he can. He is the Little Blue Engine Who Could…he knows he can he knows he can he knows he can…and so do we!!!!!!!!!
Thank you to all of you for your love, prayers and support!
Ruthie

Tuesday, November 26, 2002 at 07:53 PM (CST)

Hi everyone…….

In the words of one Seth’s favorite people, Barbara Abernathy “boyfriend is sick”. His main problem at this point is that he has no ANC (or white blood cells) to fight the infections that keep finding him. They are infections that if he had got it before he had cancer he could fight it off because he had white blood cells. He is very swollen with fluids. His urine out put is low (although they are giving him meds for that). HOWEVER “the trainman” as Dr Gowda calls him is a fighter with a wonderful spirit. Since Dr Bufo removed the port he his not spiked a fever. He has had a temp in the mid 99s (for a short time one day) but that has been it….good sign. His oxygen saturation level had been in the low 90s (good is 95 and above). Tonight it had been hanging around 99 and 100 …good sign. There were times today we thought they were going to have to put in a breathing tube. However since his saturation levels are better that has been put on hold. His respiration had been in the 40s (ours would be in the teens). Tonight they were upper 20s and lower 30s…good sign. His breathing has been easier. His blood pressure had picked up as well another good sign. His heart rate is in the 140s but understandable since he is so sick. He is by no means out of the woods!! He is still critical. We are praying so hard that his white blood cell count kicks in. I am not sure if I mentioned it before, but Dr Gowda ordered him a shot that helps increase the growth of white blood cells. He can only have it once every 24 hours. Tonight will be his 3rd shot. Last time he had the shots his counts for ANC went from nothing to over 1000 in a couple of days. We will truly be thankful on Thanksgiving if Seth has an ANC of at least 500.
He is getting Morphine to keep him comfortable. He is very agitated when he is awake.
Seth needs to make a turn around in the next couple of days. I feel very strongly he will. He is a real fighter!! Scott and I can not even imagine our life with out him. It has been a very emotional and stressful 5 days!
Please keep the prayers, positive thoughts and love flowing! This is getting Seth through this battle (and us). We still have a very rough and uncertain road ahead of us but because of all of you we will do it!
The Pediatric Oncology Support Team has been hanging close to us for which we are grateful. They truly are a Godsend. The nurses on the PICU floor have been great. The nurses from the 2nd floor (oncology floor where we normally are) have been coming up to visit Seth and check on us. They are awesome!!!
Barbara Abernathy also helped us pick our new motto…if you are familiar with the Little Blue Engine story…and the train says “I think I can I think I can..” going up the mountain. Seth is going up the mountain. Everyone knows that train made it up the mountain and over to the side and so will Seth!!

Peace, prayers and lots of love Ruthie

Sunday, November 24, 2002 at 09:33 AM (CST)

Hi everyone…. Today is Sunday and Seth is in PICU…….I hope this is clear as I am doing this in a hurry

Seth was admitted back to St Mary’s on Wednesday for a fever. I met with Dr Gowda and Dr Mateo (Infectious Diseases Dr) on Wednesday. They both wanted to figure out the source of the infection. Chest x-ray was done and it was clear. Thursday his temperature went up over 102 and he looked really pitiful. I was scared that we would lose him to some stupid infection before we ever got to transplant. Nurse Tracy was on that day and she was very supportive. She kept me updated and kept Dr Gowda updated with any changes. I learned from her that fevers use up your platelets. Motrin does the same thing and that is why kids with Cancer can only use Tylenol (this is a very simple explanation). So he was burning up platelets with this fever. The question was do we give Motrin (that burns up platelets) to get rid of the fever that was burning up platelets. No one knew the source of the fever (infection) and how long it would last. Dr Gowda felt very sure that this infection was not related to the Leukemia. The stool sample they did (on Friday) came back negative for the C-Deff. Dr Gowda did give him a dose of Motrin. Finally later on Thursday a blood sample showed “gram positive cocci”. They started him on an antibiotic. It is given every 8 hours with a 2-hour drip. He seemed alittle better Thursday night. Part of the problem is he still had no ANC (his body had no ability to fight infection.. very few white blood cells). Dr Gowda decided to put off chemo and the bone marrow aspiration till Saturday morning at 8:30. He did not want to take any chances with the infection. He would also need a platelet transfusion before the bone marrow aspiration could be done. On Friday his temp went up and down again. It was put to 101 +, not as high as the day before but still a fever. He was more awake on Friday. He was weak and tierd. His weight is down to 25.3 (he has had diarrhea for the last couple of days). Dr Mateo came to him on Friday. He ordered more tests to rule things out. He ordered an Echocardiogram to make sure the heart is not involved. He also ordered for Seth to be de-accessed and re-accessed to make sure there was no infection growing in his line going to his port. Seth was not happy about this. That involved taking the needle out of his port on his chest and putting in a new one.
Friday night he seemed a bit better. He had not eaten all day but he was getting his tube feedings. They had used strawberry flavor formula and we told him that was his “pink donut” from his friend Miss Diane at Dunkin Donut.
Seth was scheduled for a bone marrow aspiration and 2 chemos for Saturday morning starting at 8:30.
I spoke to Scott around 9:30 AM on Saturday (I was at my mom’s with Emily). Seth was running a fever through the night the bone marrow aspiration was cancelled. They still planned to do the chemos. One is a bag chemo that hangs and will drip in to his port. The other one is called “peg” and it is a shot given in to the muscle in his leg. I am concerned that he may have reaction with this one. I made it very clear of my fears and the nurses are great so they ready for anything. Scott said they were up most of the night so they are trying to get some rest. I will go up later and switch with Scott.
Things got worse on Saturday. He started breathing faster and his color turned “dusky”. Michelle was our nurse for the day. Karen (the nurse) was also on duty and spent a lot of time with us during the day. I could tell both were very concerned about Seth’s breathing and the difficulty he was having. They talked to Dr Gowda, Dr Mateo, Dr Bufo (who was on vacation) and Dr Schechtman (who was in New York) and the decision was made that the infection was definitely in his line (his port) and it needed to be pulled. Emergency surgery was scheduled immediately. Dr Bufo came in from his vacation to pull the port from Seth’s chest. Michelle started Seth on oxygen because the oxygen in his blood was dropping. His heart rate was up in the 180’s (high for Seth is the 120”s). His blood pressure was low. The problem at hand was Seth had no white blood cells (or ANC) to fight the infection. I was scared to death that we would lose Seth at this point. Karen and Michelle were wonderful and moving fast to get things going. Seth was not looking good at all. I spoke to Scott by phone (he had Emily at our house). He would take Emily to my mom’s and come meet me at the hospital. Seth needed platelets and blood. He had none in his directed donor bank and only one bag of platelets available in the blood bank. Michelle made sure they held them for Seth. He needed them to have surgery. By the time everything feel in to place it was around 8:00. The nurses put me holding Seth in a wheelchair. Michelle grabbed his oxygen tank, Karen pushed his IV pole and Brenda pushed the wheelchair. They flew me down to the operating room. Dr Bufo explained everything that could possibly go wrong. That was a very scary conversation. He said when he pulled out Seth’s port that moving of it would make more of the infection go in to his body. He would probably get sicker before he got better. Seth would have to go to the Pediatric Intensive Care Unit (PICU) for a couple of days and he would be on a breathing tube.
Karen and Michelle stayed with me for a while. Scott got to the hospital after Seth went in to surgery. We were both so thankful that Dr Bufo came in from vacation to do this.
Seth came through surgery ok. NO BREATHING TUBE!! The port was out. He got platelets during surgery and would get red blood in an hour or so. He had a line put in his hand for meds for now. In a day or 2 they will put another line in his arm called a “pic” line (sp?). Not to long after that when the infection is completely cleared he will have a new port put in on the other side of his chest. The race is now on to see if his body can start making white blood cells to fight the infection (antibiotics can only do so much) or if the infection is going to win. We will be at St Mary’s for a while. He is still in PICU. That day was so frightening for us. We are soooooo thankful to Michelle and Karen. Like I have always said those nurses are the BEST!!!!!!!!!!

Thanks to my sister Dori for helping us out on Thursday with the “wild woman”. I don’t know what we would do without her and her husband “Uncle Todd”. She is the only sibling I have to depend on. They will also help out today (Sunday) with “the wild woman” so we can rest. Scott stayed with Seth through the night in PICU. I will go there today so he can go home and get some sleep. We will REALLY miss them when we are at Duke. Their new baby is due in a few weeks.



DONORS NEEDED DONORS NEEDED DONORS NEEDED DONORS NEEDED

Please remember Seth and all the other cancer kids need platelets. We know it is more involved than just donating blood and that is why there is such a shortage. But our kids really need it and it must be CMV negative. Even if you don’t live in our area go to your local blood bank and donate to the closest site where they treat kids with cancer.

Please also remember in your prayers our little friend Cameron (I have mentioned him before). He has Neuroblastoma. He and his mom are currently at Duke where he had a transplant and radiation. He recently had a test that did come back the way the family had hoped. I will include his site below.

Dad
He is still weak but seems “a bit” better. He had chemo this past week.

Thank you, Peace, prayers and lots of love
Ruthie

Wednesday, November 20, 2002 at 09:53 PM (CST)

Hi everyone…..

As many of you may already know Robert Mitchel Charlton passed away this past Sunday. We know that Robert is now at peace and no longer in any pain. We continue to pray for his family and friends who are trying to get through this difficult time. Services are stated on his website www.caringbridge.org/fl/robertmitcel

Seth
We are finally H O M E…..well we were for about 24 hours. We thought Seth would be discharged Monday but he needed a blood transfusion that night because his hemoglobin was low. Also Dr Gowda wanted to get Seth up to a higher volume on his tube feedings. Dr Gowda did come to see him late on Monday. He stated the bone marrow that showed the relapse was loaded with Leukemia cells (11/08/02). The blast was at 50. This recent bone marrow aspiration should a more diluted bone marrow. He said it was not as concentrated. The blast was 48. I was really hoping for a much lower number. Dr Gowda seemed comfortable with the results. He said he would expect a lower blast number on the next bone marrow aspiration, which is this Friday. We probably won’t know anything till the following Monday. Dr Gowda said the diluted bone marrow is a good sign.

On Tuesday morning Seth needed to have blood counts done before we could leave. His platelets were low at 28. He needed a transfusion. They also needed a urine sample. He hates the “peepee bags”. The platelets came late in the morning. Since they were direct donor we could see on the card they came from his Uncle Todd. How special!!!
Since Seth now has ALL (Acute Lymphoblastic Leukemia) he has a whole new protocol and new meds. When we came home on Tuesday night it felt like the time when we came home the first time after he was diagnosed in June. All new meds to learn.
Since I am on the day shift when Seth is in-patient at the hospital I learned feeding tube care. I don’t think Scott will fight me for that privilege. I will be glad when he gets his “Mickey Button” in about 5 weeks. Right now he has a long tube sticking out of his stomach. At 6 weeks from surgery he can have a “Mickey Button” put in. This is a flat button that is almost flush with his skin.
He has taken some steps in the last 2 days. He is a bit weak. He does seem better since we got home and he is among more familiar surroundings and his toys.
The new steroids he is on is making him very irritable and I do mean VERY!! He is very anxious and obsessive. I am pretty sure he only has to be on it for 4 more days. He has no ANC to speak of.

Wednesday morning I was busy trying to write out his new med schedule. He has a couple of meds that are around the clock. I always speak highly of those wonderful nurses on the 2nd floor at St Mary’s. I really missed them at 4:00AM when Seth needed his meds. However they go in to his feeding tube so he does not even have to wake up. In the morning took his temp and it was 100.1. I held my breath and took it every 20 minutes. I was expecting a nurse to show up at the house with in the hour to show me how to use the feeding pump that was dropped off by a gentleman the night before. When his temp hit 100.8 I called Dr Gowda. I spoke to Pam and gave her details. She was going to talk to Dr Gowda and call me right back. In the mean time his fever hit 101.4. I called Pam back and she said take him straight to the ER. I called Scott at work and he came home. I took Seth in and he stayed home with “the wild woman”. My mom was taking dad to his Dr and chemo appointment.
After several hours in ER and a visit from Dr Gowda Seth was admitted for a fever. Dr Gowda (I think) feels that the fever is still from the C-Deff. I think we will probably be there through Friday when Seth has his next round of chemo and bone marrow aspiration.
Scott took Emily to the fundraiser at Juno AleHouse before coming to switch with me tonight at the hospital. He said it was really going well.




Dad
Dad has been very weak and falling. It has been very difficult to watch. Although he is thinner these days it still too much for my mom to handle. When he fell the other day she could not get him up. Thank God Cindy Martinson was home and came down to help. Dad’s Dr appointment went well today. His counts were good. The problem with the weakness the Dr feels, Dad was over medicating himself. Dad was sleeping around the clock. He was only supposed to take sleeping pills as needed. When mom tried to wean him back he would get very upset and angry with her. This has been a big source of stress for my mom. She is truly an amazing woman. The Dr gave dad more clear directions of when he can take the meds.

Thank you for all your love and support
Ruthie

Saturday, November 16, 2002 at 08:44 PM (CST)

Hi everyone…we are having computer problems so that is why it has taken me awhile to up date.

Seth had a good day on Thursday. He only threw up a couple of times. They started the tube feeds again using clear Pedialyte. It ran at a very slow rate through the night and he kept it all down.
Friday morning started off with a number of calls with Duke and the transplant coordinators. They mainly wanted back ground and family information. They also shared that an initial visit is not necessary. They stated most families do it to get a “lay of the land” and for a tour. We have decided against it. Seth’s ANC is none existent today…so why risk it. Duke wants Seth to complete this block of chemo (induction) and the first week of the next (consolidation). They then want him to have about a 3-week break so his counts can recover. I am a little nervous about the “down time” and the possibility of relapse. Nurse Karen said “talk to those people at Duke, tell them what your fears and feelings are”. Thanks Karen I will! They are looking at probably December 30th or the first week in January for us to go up there to start the process on transplant. Seth MUST be in remission and his counts recovered in order to go in to transplant. “The ball is rolling!”
Seth had his spinal chemo, bone marrow aspiration and a shot in the leg of chemo (called peg) on Friday. The bone marrow aspiration is very important, as it will show how his body is responding to the chemo. It looks at the Leukemia cells in his body. There is something called “blast”. A healthy person has no blast however a child with Leukemia has a number. Seth’s was 22 when he relapsed and went up to 50 the following days. We are hoping that with this intense week of chemo it will be less than 5%. If it is, then he is considered to be in remission. Dr Gowda can get a count from the lab at St Mary’s but slides are also sent to a lab. We thought he might give us some idea by the end of the day. I saw him later in the day and he said he did not know. I am so apprehensive because this feels like last week when we found out he relapsed. I know now that Dr G knew the night before (last week). I think that is what I read in his face when I thought he looked so tired. He may have wanted to wait to get the exact number from the lab. I hope and pray that I am over reacting.
Seth had a reaction around 3:30 to the chemo shot that had in his leg that day. He broke out in a red rash and ran a temp. Let me tell you if want a sign of some GREAT nurses, go hang out on that floor for a day. We had 4 nurses in the room being very calm but getting things ready in case Seth got in to trouble with his breathing or whatever. He was given a shot of epinephrine (sp?). They gave him Benadryl and Tylenol. The reaction seemed to subside. However around 6:30PM he got red again and ran a temp. He was doing much better by the time I left and Scott took over at 8:00. He was eating crackers and drinking some water. They are also running his tube feeding again using formula at half strength.
His belly is still bothering him but not as bad as the previous days. Dr Bufo stated because Seth’s platelets are so low and they will continue to dip with the present chemo schedule he wants to wait at least 10 days before he even thinks about adding the new feeding tube. He has added some meds that should help get his stomach functioning. He is also hoping just maybe between the meds and the down time his stomach might kick in to action.
Today is Saturday. I took Emily to see Seth at the hospital. The plan was for Scott then to take Emily to our house so he could spend some time with her and so my mom could have a break. Scott did see Dr Gowda in the morning and he said he has not gotten the results back from the lab yet. He said he could not tell by looking at the bone marrow. Dr Gowda said he would not know till Monday.
Scott noticed Seth was warm when he was getting ready to leave. I took his temp and it was 101.6. Nurse Karen jumped in to action, contacted Dr G, took some cultures and gave him Tylenol. Dr Gowda started him on antibiotics. I noticed that the site where he had his bone marrow aspiration was still seeping some blood. Nurse Karen checked it out. She checked his counts. His platelets were 28 (normal range 150-450). So he got platelets today. Dr. Gowda said we may get to go home Monday. He has not thrown up since Thursday and his tube feeds are up to ¾ strength. We just found out that Seth’s stool sample came back positive for “C-Diff”. It is an organism or virus or something. There is a specific antibiotic that is given and Seth will get it. The symptoms are loose stool, fever, abdominal cramps and weight lose. Yes..Seth is on TPN and G tube feeding and he lost weight. Only Seth could do that. He did not lose much he went from 26.8 to 26.1. GEEEEZ!
Emily is doing well. She keeps us laughing. I could not get through this with out her. Scott is doing much better emotionally. He just needed some time.

FUND RAISER
WPBF.TV 25 (694-2525)..the ABC station in our area (where Scott works) is hosting a fundraiser that will benefit Seth. They are doing a Bachelor Auction to celebrate the season finale of “The Bachelor”. Be a bachelor, bid on one or just join the fun! Wednesday, November 20th 6PM to Midnight at the Juno Beach Ale House. Auction proceeds benefit the Seth Bunkelmann Fund.

Dad
He is about the same. He did fall today while he was on the back porch. He seems ok. He did not bonk his head or anything. He said he just feels a little weak. Bill Martinson was kind enough to sit with him while mom went to a church luncheon.

I will update as I get information on Seth’s bone marrow aspiration.

Thanks for all your love and support
Peace and lots of love, Ruthie

Wednesday, November 13, 2002 at 09:51 PM (CST)

Hi everyone…….

Seth
Seth was having a better day today. Today was day 10 at the hospital. He was awake more often and I even got him out of bed for about 15 minutes. We went down to the playroom but after a short time he felt it was too loud and wanted to go back to bed to sleep. His counts remain about the same. His ANC is around 350. His weight was 26 and ½ pounds yesterday. The TPN feeds are really helping. He is eating some (crackers and water) by mouth today and keeping it down.
Dr Adams came by to review the test from yesterday. He stated that Seth’s stomach is “atonic”. That means it is just sitting there doing nothing. I guess your stomach is in a constant state of contracting and his is not. Dr Adams feels that the chemo was so hard and toxic this go around that it shocked it. He and Dr Gowda have agreed to allow the stomach to rest. So the plan is to take a smaller tube and pass it through the current stomach tube (the peg) and bypass the stomach, go through the duodenum in to the intestines and allow the tube feeds to go there. Dr Adams is concerned about Seth’s platelet level. He is concerned when they put the tube in if it rubs or anything it could cause bleeding. Dr Gowda does not seem as concerned and feels that giving him a transfusion of platelets would help solve that problem. We are not sure when Seth will get this new tube. I imagine he will be at the hospital for at least a few more days. Dr Gouda’s plan is to get Seth healthy in the area of nutrition and get him in to remission so we can get to Duke for the bone marrow transplant.
Dr Gowda shared with us who the Dr will be that will be in charge of Seth’s transplant. My understanding is she will be contacting us soon. Once Seth is stable we will go up to Duke as a foursome as requested by the transplant Dr. They will draw the blood from Emily, Scott and I there. We will probably be gone for about 3 or 4 days in the next couple weeks for that first initial meeting. Once Seth is in remission and we have a donor we hope to be off to Duke. The AWESOME thing about all of this is that once Seth has his transplant and it takes he is done with chemo. Remember when he was first diagnosed in June he was put on a 2 year protocol. Once the transplant is done no more chemo. Seth will still have regular visits with Dr Gowda to make sure he stays in remission…but no more chemo.
“Thank you” to all of you who have donated blood or blood products to Seth. If anyone is reading this for the first time, go to “history” at the top of this page and read 11/12/02-journal entry.
Seth was very happy to see his friend “Miss Barbara” today as was I. She (and the rest of the P.O.S.T. team) has been such a great source of support and comfort.

Dad
Dad had last week off from chemo. He was back at the Dr.’s today for treatment. Mom feels he is about the same. He is still requesting “healthy” visitors. He enjoys sitting out on the front porch and chatting.

“Thank You” for all of your support, prayers and love. Please remember our friend Robert and his family in your prayers.
www.caringbridge.org/fl/robertmitchel

Peace and Lots of Love Ruthie

Tuesday, November 12, 2002 at 09:20 PM (CST)

Hi everyone,

Donors Needed
A wonderful friend named Jackie started an account today in Seth’s name at the Blood Bank (the one that is on 45th street right next door to St Mary’s). The Blood Bank called me when she went in and I was able to ask some questions. Seth’s blood type is O positive but he can also use O negative. But you must be CMV negative to donate to Seth (the blood bank will do the test). Plus the blood bank needs to radiate the blood for Seth. Tell them he has Leukemia or just print this page and take it with you. Also they use something-called CPDA preservatives (for kids). Adults they add something called Adsol so it must be Adsol free for Seth. Even if you are a diffirent blood type than Seth they need all types for the other kids with cancer.To donate Platelets the blood type does not matter but again you must be CMV negative. Also if you are interested in possibly being a bone marrow donor tell the blood bank and they will also do that blood test. We have not been tested yet to see if any of us are a match yet. I will let you know as soon as we know. We have to have a donor before we can go to Duke.My understanding is there is no charge for any of this at all. If you have any questions contact the blood bank, Scott or myself.

Ok, today’s events…we have a new man in our life…Dr L. Adams. He is a gastroenterologist. He is trying to help us get Seth off the TPN feeding and replace it with the tube feeding. He is trying to figure out why Seth was throwing up everytime something was put down this stomach tube. He ordered some test today, which Seth had (5 hours in radiology). However I am happy to report Seth has not thrown up at all today and I left at 8:20PM. He even had a lot of white barium (for his test today) put in his stomach through his feeding tube and he had not thrown that up. He ate some crackers later tonight. His mood improved 100% later this evening. He was talkative and wanting to play…it has been awhile. His counts are still good although his ANC is around 350.



Thank you so much for all your support, love and prayers. Thank you for all the wonderful notes you are leaving in Seth’s guestbook.
Ruthie

Monday, November 11, 2002 at 09:03 PM (CST)

Hi everyone,
Here is quick up date on Seth. Since Friday’s news of the relapse we have been on an emotional roller costar. Although I think I have gone in to that “mommy mode”. We have no other choice but to “let go and let God”. You truly find out what your faith means to you at times like this. I think that is why I have such a since of peace about all this. Don’t get me wrong I have my moments but there is SO much support all around us. Thank you God!!
Seth had some really rough days on Friday and Saturday. It is so hard to see your little boy in so much distress. He was having a lot of stomach pain. He has been throwing up and refusing to eat. He is been fed through his port sight (TPIN). The tube feedings in his stomach are on and off pending how he tolerates them. They keep him as comfortable as possible. He has had fevers on and off. He has had very heavy duty and toxic chemos which has knocked him out. His white blood cell count was 32.0 (normal is 5.0 to 14.0..high counts is a sign of Leukemia) on Friday. Since he started chemo it was down to .5 today. That stuff “kicked butt” as they say. He has very very little ability to fight infection at this point. That is why no kid visitors are allowed at this time. He needed red blood cell and platelet transfusion today. We are just learning about what all this means and what transplant means. They are great at giving us what we can absorb and waiting till we can handle more.
Seth’s stomach biopsies came back normal or negative!!!!

DONORS NEEDED
If you are interested in donating red blood….tell them it is for Seth or a child because it has to be Adsol free and CMV negative.Seth is O positive so he can use O positive or negative. They use CPDA preservative for the little kids. He also needs platelets (blood type does not matter) but you must be CMV negative. We HOPE that Emily will be a perfect match (6 out of 6) for his bone marrow transplant. If not we hope that we will be able to find cord blood that will match. However the transplant center will make that choice. We have chosen Duke in North Carolina. We can not go up there till we have a donor. They should test the 3 of us this week. Emily has the greatest chance, which is 25%.

Let me tell you if you have never been a patient at St.Mary’s, these nurses are the best!!! They are so good to Seth and us. They are very concerned about our little boy. I just can’t say enough and how thankful we are for our “team” of people who are fighting this fight with us. Dr Gowda is truly an amazing man. You can read it in the way he interacts with Seth and in his face how much he cares. Dr Schechtman has been our corner since the day we first met and Seth was a couple weeks old. He is the type of Pediatrician who looks at the whole family and not just the sick child. There is also Dr Baynham, Dr Bufo, and the P.O.S.T team (I am sure I have forgotten to mention some one). We will miss everyone so much when we are up in North Carolina.
We will probably be at St Mary’s for a few more days. Dr Gowda wants his “nutritional situation stable” before he is released.
I will post as I have information and time to post (the “wild woman” wants me to herself once I am at mom’s).
Please remember in your prayers our friend Robert Charlton and his family. They are going through a very difficult time! www.caringbridge.org/fl/robertmitchel

Peace,Prayers and lots love to all of you
Ruthie

Friday, November 08, 2002 at 08:54 PM (CST)

Hi everyone….

Seth
It has been a l o n g week. Let me start from this past Friday November the 1st. Seth started the day ok but as it went on he developed a stomachache and he said his leg hurt. He also started running a low-grade fever. On Saturday he seemed to be more uncomfortable and was getting more agitated. Scott called Dr Gowda and he gave us some suggestions. As the day went on he complained and cried more. I went to my sister’s baby shower with my mom and left Scott home with the kids that night. I had my cell phone so he could keep me posted. I spoke to him later in the evening and he said he called the Dr because Seth’s temperature was 100.6. The Dr said because his ANC was so high he did not see a need to bring him in to the ER.He told Scott to call back if anything changed. Sunday his stomachache grew worse. Later in the day he started asking for help to sit up. He walked like a little old man …all bent over. We called Dr Gowda back and gave him the update. He told Scott to take him to the ER to have him admitted. Dr Gowda was calling ahead to let ER know. I stayed at home with Emily. The plan was that Scott would stay with Seth at the hospital that night. He would stay there while I took the MRI and X-ray films to Dr Baynham in the morning.
I took Emily with me to Dr Bret Baynham’s office to get an assessment of what he saw on the films. As soon as I pulled in to Baynham’s Jupiter office Emily threw up. I had a change of clothes and just enough baby wipes to clean her up. Thank goodness Seth’s car seat is in there as well. She seemed fine. Her mood was good and no fever.
Dr Baynham reviewed the films and saw something suspicious in the upper right leg. He said the area where the original tumor was also highlighted. We reviewed the situation and decided to do a biopsy of both sites. He said he would have to do it tomorrow (Tuesday) since he had to catch a plane at 11:00 Wednesday morning. If anyone ever needs a good Pediatric Orthopedic Dr ….Dr Bret Baynham is THE man!!!!!
I took Emily to my mom’s and her dropped off her the yucky carseat and clothes. That woman is a saint!! I hope and pray I am at least half the woman, mother and (someday) grandmother that she is.
I headed back to the hospital to up date Scott and so he could go to work. Scott took the news a little harder than I did. I guess the way I see it in my heart I know Seth is going to be fine. This journey may take a little longer if this is new disease in his leg. We may have to change his protocol around a bit and add radiation…BUT we will still get to the same point someday which is a CURE!!! Since somebody has to be responsible in our household and work…it is Scott. He feels bad because I go to all the Drs appointments; know all the nurses and what have you at the hospital. I also chat a lot with the wonderful folks with the Pediatric Oncology Support Team. I think he feels a little out of the loop. And of course he is worried about his son.
Seth’s biopsy was not scheduled until 3:30 on Tuesday afternoon. Since he was a last minute add on that was the best Dr Baynham could do. He was NPO (nothing to eat or drink) after 8:00AM Tuesday.
Tuesday morning came and Seth had nothing to eat since 9:00 the night before. Fortunately he slept till about 10:00. I took him on a tour of the hospital in one of the kiddie wagons. His Grandma sent him some money to go shopping in the hospital gift store. He was not feeling up to it so we only used up about an hour. He did sleep on and off till 3:30. Scott got there around 3:00. The time for the biopsy came and went. Our wonderful nurse for the day was Brenda. She said they called from down stairs and there had been some trauma cases so Seth got bumped for an hour or so. Brenda kept on top of it and there was trauma case after trauma case coming in. She said around 5:00 that they were coming for him around 6:00. Remember this poor little kid has nothing to eat since 9:00 the night before. At 6:00 still nothing. Dr Baynham came up on the floor at 6:15 and he said he was told by downstairs (the OR) that it would be another 45 minutes to an hour. Dr Baynham had been hanging out waiting the whole time. At 6:30 the OR called and said yet another trauma case came in and they could not give Dr Baynham an (OR) operating room tonight. In fact the hospital was going on trauma bypass meaning they were not taking anymore trauma cases at that point. I knew Dr Baynham was leaving in the morning for a flight. I was thinking it would now be another week before we could do this (when Dr Baynham was back in town). Dr Baynham however got the OR folks to agree to give him a room at 7:30 AM Wednesday so he could do the biopsy before he left town. The waiting had been very difficult and emotionally draining. We started feeding Seth at that point since he was going to be NPO again starting at 1:00AM. He only ate a few fish crackers and a few chips. He continued to complain about his stomach hurting.
Dr Bufo also wants Seth to have the feeding tube (peg). He had checked on Seth when he first came to the hospital and noted he had lost a couple of pounds. We tried to coordinate the biopsy and the peg but could not get it to work. Dr Bufo will put the peg in on Friday morning.
The transport people came for Seth just before 7:00AM Wednesday. Scott and I both went down with him. Dr Baynham completed the biopsy and spoke with us afterwards. He said what he could tell is based strictly on what he could see and not lab work soooooo he said he could be wrong. He stated the site where the original tumor was he did not see any gross abnormalities. He added in the new site he did see an area of abnormal cells. He said however that there were more normal cells than abnormal cells. It will take 3or 4 days to get the results back. Seth only ate about a doughnut and a half that night. Dr Baynham also prescribed Morphine for pain as needed. Dr Baynham put him in soft cast from his knee to the tip of his toes.
Thursday was a rough day for him. He refused food all day long. He cried about his stomach hurting. He slept on and off (very short catnaps). His little body would shake like it was having a wave of pain and he would wake up crying. Around noontime he did the same thing and also started throwing up. It appeared to have blood in it. Dr Gowda was doing spinal taps at the time. Seth started crying for daddy. I called Scott and he came over. I spoke with Dr Schechtman and expressed our concerns regarding Seth’s stomach. I told him I was worried about putting the peg in and not knowing what is going on in his stomach. I suggested an upper GI before the peg is placed. Dr Schechtman stated he wanted to talk to Dr Bufo and would call me back. Dr Schechtman did speak to Dr Bufo and the plan is to continue with the peg and while he doing that he will use a scope to look at Seth’s stomach (for lesions ect.). He stated he would also take samples (biopsy) from different spots in his stomach. He said that Seth would be NPO starting at 2:00AM on Friday morning. The surgery would be done at 11:00. Seth also could eat the rest of the day. He would not be allowed food until Saturday morning. GEEZ!!! I understood why when he explained it to me but I could not repeat it to all of you now. His platelets are low and he will get a transfusion before he has surgery on Friday. He spent most of the day wanting to lie on the couch in his hospital room. He wanted all the lights off and TV off. He wanted me to lay down next to him with my arms around him.
When Dr Gowda came in to see him on Thursday Seth said to him “ you have to do something to make my tummy better”. I am not sure if the look in Dr Gowda’s face was from sheer exhaustion of a long day or what Seth said to him tore at his heart. I reviewed what Dr Bufo’s planned to do in addition to the peg and he totally agreed. He ordered some other meds to make him comfortable to get Seth through the night.
I asked Seth if he was angry. He said “no I not angry”. I asked if he was scared and he said, “no I not scared”. I asked if he was sad and he said, “yes I sad cause I hurt”. It was a very pitiful voice. When I left last night he had nothing to eat all day.
Given everything he is still a real trooper!! He is not in the mood for visitors at this point. He wants peace and quite.

**************Friday Update************
The above was written last night (and the stuff on mom and dad). This is an up date as of today; Dr Gowda came in early this morning and told Scott the results of recent test. It was not good news. It was news we never expected. Seth has relapsed. The disease has gone in to his bone marrow. It is now (my understanding which is not great right now) Leukemia. Dr Gowda will try to get Seth in to remission so he can have a bone marrow transplant. We will need to go a place like St Jude’s in Tenn. Or Duke Univ. in North Carolina. I understand the average stay is 3 months…pending how he does. They will look to see if Emily, Scott or I can be a donor first. They will then look to the bone marrow bank. Anyone can be a donor. You go to your local blood bank and tell them you want be a part of the bone marrow bank and they will test you from there. The big thing now is to get in him in remission. Seth also had his spinal tap, spinal chemo, bone marrow aspiration and feeding tube put in. Dr Bufo did not see anything abnormal in his stomach but did take a few biopsies. Dr Gowda is starting right in again on heavy chemo. Seth is getting a new protocol. I don’t have a lot of information at this point as the shock has taken over most of my brain cells. Scott has had a real hard time dealing with . We will need help and support and I am not sure what that is at this point.


********************************************************************************************



Dad and Mom
Yes I needed to add my mom to this. On Wednesday a couple of hours after Seth got out of the OR and recovery my mom called and I could tell by her voice something was wrong. She said she felt if she stands up she would fall down. She said she had no pain and was not woozy. She said she did feel shaky. Remember she has Emily and is caring for my dad. She called Connie a wonderful lifetime friend who dropped everything to come over to help. Connie told her she wanted to call 911 as soon as she got there. Her voice sounded like she was ready to cry although she said she was not. She said maybe she was just over tired. I called Scott because I could not leave Seth. Scott left to go get Emily. I tried to call my sister Dori but she was in class. I call her husband and updated him. Dori then happened to call me. I filled her and she dropped everything and went to see mom. My mom mean time called her Dr and he thought she was having a panic attack….gee you think with all the stress she has been under? Connie stayed until Dori and Scott got there. Mom rested and felt better a couple hours later. She went to the Dr the next day and he said she was (1) not eating enough (2) dehydrated (3) rest more and (4) not to take on so much stress. My dad’s answer to all of this was telling my mom “you need to go to bed earlier”. I know a lot of it is dad. He should be doing more for himself (and I mean simple things). She does not know how much to push him.
Dori the wonderful sister and daughter that she is came and got Emily early Thursday morning and spent the day with her. She will do the same tomorrow. She said that is what sisters do for each other!
Thank you to Connie for coming out to the house and staying with mom and Emily. Thank you to Jim and Nancy. I forgot to mention in my last update that they were the ones that caught dad last week when he fell at church and helped get him home.


I will update when I have news on Seth.
Thank you again for all your positive thoughts, support, prayers and love!
Ruthie, Scott, Seth and Emily Bunkelmann

Friday, November 01, 2002 at 09:21 PM (CST)

Hi everyone….

Seth
Our day started at 8:00AM. Seth did well on Thursday morning (Halloween) with Dr Gowda. He wore his costume. He went as Tigger instead of an engineer. He decided since his sister was Winnie the Pooh he wanted to be Tigger.He looked toooooo cute!
His counts were sky high, over 6000. WOW!! Seth was scheduled for a spinal tap with chemo on this day.
Dr Gowda had the results of the MRI and said it did not say anything different then the MRI in September. He said, “it shows a persistent abnormality of the right tibia. Residual tumor cannot be differentiated from post treatment change.” Dr Gowda stated he wants Dr Baynham to see the MRI films and exam Seth. We have the appointment already scheduled for Monday the 4th. He stated that if Dr Baynham is not 100% comfortable with what he sees then he wants a biopsy done on the right leg.
Dr Gowda increased Seth’s home chemos today by 25%. I think another 25% and that will be the dosage he was originally scheduled for.
I took Seth over to the hospital to check in for his spinal tap. The kids on the Oncology floor were getting ready to go Trick or Treating in the hospital (under the watchful eye of Miss Alfreda). It was wonderful and the kids had a blast. The administrative boardroom was decorated as a haunted room. It was great. The kids all got TONS on candy. Miss Alfreda took extra bags and collected for the kids who could not leave their rooms because their counts were too low. She is so amazing! After we finished that floor we went back to our room. Seth was “hooked up” to his poll and went on another trick or treating round downstairs on the first floor. Remember some of these kids (including Seth) were NPO (no food) because of the spinal taps they were having later that day. He was great. This huge bag of candy and he could not touch it. He is not really in to candy. He loved the parade (as he calls it) of going around and wishing everyone a Happy Halloween! He also enjoyed bouncing for everyone. He likes to be line leader (wonder where he got that from…Miss Leslie).
His spinal tap went well. He wore his costume down to PACU, mask and all. The nurses got a kick out of him down there.
The day was very long. Seth still needed to have his “breathing treatment” before we left. This is a special medicine Dr Gowda orders and is in puts in a nebulizer. This medicine helps prevent the PCP pneumonia. Seth use to take Bactrim 3X a week but it was bringing his counts down so he has the breathing treatments in place of the Bactrim.
Seth fell on his right leg while we were waiting. He screamed. A nurse came running down the hall to see what happened. He cried and cried. You could tell it was very painful. This reminded me when all this first started. I have lots of concerns about that leg. I finally got him calmed down.
Robert who was the respiratory therapist brought up the meds and attempted to set up the treatment. This treatment has to done in a special room and I have to wear a mask as well. The treatment takes about 15 minutes. This treatment covers Seth for 30 days. I am not sure if it was because it was such a long day or what but Seth had a major melt down! He has had this treatment 2 X before and cried but I could talk him through it. This time he screamed and cried to a point he was making himself throw up. Robert was very patient and understanding and said he did not want to torture Seth. He said it was not safe to do “blow by” (meaning just to blow it in his face) with this medicine. I tried to calm him down but it was useless. I told Robert I would follow up with Dr Gowda in the morning (which I did and he is back on Bactrim). We finally left around 6:30PM. We did not get home till close to 7:30. He still wanted to trick or treat around the neighborhood. He had a great time! He and his daddy went to several houses on our street. I so enjoyed watching him almost run from house to house like all the other kids. He was not interested in eating the candy. It was the event of collecting. Hard to believe he had a spinal tap with chemo a couple hours earlier. He really enjoyed himself. Emily did not want to go door to door. Why would should she …she was too busy picking out all the lollypops from the bowl of candy we had to hand out. At one point she had one in her mouth and 2 fist full.

Dad
Dad fell at church this past Sunday. He was becoming depressed. He said he was tired of feeling so bad for the last 16 months. He was feeling very low on Sunday. We want to say a very special Thank You and God Bless to Jackie and Pete Perez, Mr. Gates and Bob and Bobbie Hundley who came to see him upon a quick request!!! Mom felt it helped a great deal!!
Mom, dad and Mr. Gates came up with a list of questions to ask the Dr when they went on Wednesday for dad’s appointment. Some of the questions were regarding depression, his appetite, is the chemo doing any good and what is the prognosis now. I think we were all feeling very apprehensive about this appointment.
However it went well!!!!!!!! The Dr said the cancer test shows he is doing better and the blood test shows improvement. He was put on Paxil to help with the anxiety. The Dr said the prognosis shows improvement and only time will tell. The Echocardiogram should alittle weakness but the heart was good. THANK YOU GOD!!!! (We did the “if you are happy and you know it clap your hands” dance). His veins are taking a beating on his arms from everytime they give him IV chemo. They going to watch it and may give him an infusion port in his chest if the problem persist. You can tell the good news helped dad’s spirits (all of ours). We continue to request visitors. He enjoys sitting on the front porch chatting.

Be sure to check out our new photos!

Thank you again for all your love, support and prayers. Please add in an extra prayer for a special friend Robert Charlton ( www.caringbridge.org/fl/robertmitchel ) and his family.

Peace and Lots of Love Scott, Ruthie, Seth and Emily

Saturday, October 26, 2002 at 11:36 PM (CDT)

Hi everyone! A short note today

First……Thank You so much to all our wonderful friends at church. The Bake Sale is wonderful (it is Saturday night right now and we still have tomorrow). Thank you to all who baked and ate!! A very special THANK YOU to Susan Nero and Kim Barnes for all your hard work in putting it together. It really means a lot to us.

Thank You to Ryon’s dad Joe Rommel for teaching us how to insert Seth’s picture at the top of the page! Thanks again!

Seth
Dr Gowda saw Seth on Thursday and his counts were good. They even went up! His weight is holding at about 26 ¾.
We expressed our concerns about Seth’s leg and how he complains it hurts. We showed Dr G the lump that we found in his leg. Dr G. could feel the lump in Seth’s right leg. This is the same leg that had the original tumor. Dr G. ordered a MRI and a x-ray. He feels it is unlikely that it is Lymphoma. He said he also wants Dr Bret Baynham (Orthopedic Surgeon) to look at the films and to exam Seth as well.
I spoke with Dr Gowda’s office on Friday. Seth has a MRI scheduled for next Tuesday and his spinal tap with chemo for Thursday. We have an appointment with Dr Baynham the following Monday November the 4th.

Dad
Dad had his chemo this week. He did not feel so good much this week. The Dr said he saw possible signs of congestive heart failure on the chest x-ray from the week before. He ordered an Echocardiogram, which he had on Thursday. They probably get the results next week. The Dr has changed his meds hoping to make him more comfortable. He has had a lot of problems with nausea, which does not help getting his weight up. His weight is down to 114 which is down from the 120 but up from the 113 it had been the day before. He TRULY has good and bad days. PLEASE pray for him and my mom. They have had so much to deal with over the last year and a half.

Thank you for the continued positive thoughts and prayers for our special friends..Robert Charlton, little Cameron, Zachary, Genna, Jessica …..and so many more!


Thank you so much for your love, support, and prayers
Have a Happy and safe Halloween……Seth plans on being an engineer….would anyone have guessed? He wants Emily to be Winne the Pooh.

Scott, Ruthie, Seth and Emily Bunkelmann

Sunday, October 20, 2002 at 07:55 PM (CDT)

Hello everyone!
Seth saw Dr Gowda on Thursday. His counts are starting to fall again. They were 1633 the week before and this Thursday they were 1363. His leg has been bothering him again. He will limp on and off and say it hurts. Dr Gowda took a good look at the leg but could not find anything wrong. We have a great deal of faith and trust in Dr Gowda. He is a wonderful man and so good with the kids. However I can’t help but be a little apprehensive because this is how all this first started. Back in March of 2002 he said his leg hurt. He was limping. Drs did x-rays and blood work and showed nothing (this process was repeated a couple of times because the pain continued on and off). They thought it was growing pains. Nothing ever showed in his blood work or x-rays until early June. So you can see why this mom is aprehensive. Dr Gowda said to keep an eye on it. I also shared that Seth had been running low-grade temps and vomiting on and off.
Anyway Dr. Gowda said at the next visit when Seth comes in we would look at increasing Seth’s chemo drugs to try to get them up to where they should be. He reduced the dosage by half last week.
Since Seth’s counts are still up we will do another “out in the world” weekend.
Friday Seth went to visit his preschool The Rehabilitation Center for Children and Adults (RCCA). I did not tell him where we were going. One of his best buddies Trent had graduated and moved on to kindergarten while Seth has been out. His mom Karen decided to bring Trent in on Friday for a visit since there was no public school. Seth figured out where we were going on the drive over. He was very excited to see his friends and teachers. He gave Trent a “sqweezers” (hug) when he saw him and told him he missed him. He followed Trent around for awhile and then sat for story time. He lasted about an hour and then got tired and wanted to go to Grandma and Papa’s to rest. The school is WONDERFUL and we can’t wait for Seth to go back.
It is now Saturday afternoon and we just got back from the zoo. We had a good time. The zoo has changed a lot since we were there last. Both of the kids really wanted to see elephants….but there were no elephants. Emily really enjoyed the otters. We also ran in to Trent and his family. It was nice to see him 2 days in a row and a chance for the big people to snap some more pictures of the kids.
It is now Sunday and we just got home from church. Some of our wonderful friends are putting on a Bake Sale next weekend after all masses (on Saturday the 26th and on Sunday the 27th). The money will go to the Seth Bunkelmann Fund.
Seth did ok but was tired after mass. We had planned to go Sloan’s Ice Cream Store but came home to rest first.
We took Seth and Emily to Sloan’s Ice Cream Store downtown West Palm Beach. We ate ice cream; he watched the small train go back and forth on front of the store’s counter (thank you Kelley). We then rode the trolley to City Place. We walked around a bit and came back. If you ask Seth what we did today he would say …say the little train at the ice cream store and rode on a big trolley car. He said he was tired and wanted to come home and rest. After he rested we took the kids to the pumpkin at Trinity Methodist. Seth had a good time running among all the pumpkins. I have learned one thing…. it is next to impossible to get ONE good picture of two kids together. One is looking away or one is crying etc.
Seth is doing well and we go back and see Dr Gowda on Thursday. His hair is really starting to come back in.
Dad
He had a scare (and we did too) this week. He been having trouble breathing and had to sleep sitting up. Mom said he was very apprehensive waiting for the Dr.’s appointment this week. When he went in for the appointment the Dr figured the breathing problem had to be related to this medicine that he was taking to increase his appetite. So he is off of that now. He is on more medication than he has been in the past couple of weeks. When you ask him how he feels he says “about the same”.
He is requesting and so is mom…. VISITORS. When people come it really helps his spirits. Plus I think he is tired of us yaking with him. Remember please call first and check with my mom…. there are health restrictions and to make sure they are home.

But sure to check out the new photos!

Thank you for checking in on our family and leaving the messages in Seth’s guestbook. We really appreciate the love and support you have shown us……it really is helpful.
Peace and Love The Bunkelmann Family (Scott, Ruthie, Seth and Emily)

Tuesday, October 15, 2002 at 08:38 PM (CDT)

Hi everyone!! Seth had a GREAT visit with Dr Gowda on Friday. His counts were up to 1633!! His white counts were up to 2.3. Dr Gowda said some kids systems just don’t tolerate the chemo drugs well and Seth is just one of those kids. Since he has not been on ANY chemo drugs for a several days his counts went up (it tells you what the drugs to do to the kids systems). Dr Gowda wanted to get Seth back on chemo since his counts were finally up so he decided to restart them at a reduced dosage. Seth is taking his 6MP again and he started on Methotrexate (oral). His weight is holding at 26 and ½ pounds. He goes back this week for counts again.
Since his counts were up we decided to take the advantage and go out in the world. We took him (and Emily) to the Gardens Mall Friday night. He saw his friend Alton. We made sure to go to his 2 favorite spots Walden Books and the Disney store. His little sister was not in the mood to shop but we just pushed on and kept going. She finally settled down.
On Saturday his friend Genna invited him to her house. Genna just finished her protocol of chemotherapy. He had a great time and he adores Genna. He LOVED her two dogs. He especially loved the rescued greyhound named Dakota. Dakota is a wonderful dog and very gentle with Seth. He followed her around everywhere. Seth helped Genna’s older brother take Dakota for a walk. Picture this walking down the street…the dog taller than the person walking her.
On Sunday we took both of the kids to church. People were happy to see us together as a family. They both did very well in mass. A little yellow duck went flying but what can I say she is 2.
Seth’s Grandma and Papa Bunkelmann (they live in Arizona) sent him a very nice “Christmas” train (lighted) lawn ornament. Once it is put together it will be a couple of feet long. Bets are being placed when he “makes” daddy put it out front on the lawn. I am betting on Halloween. He is so excited!
The Child Find program is currently trying to arrange for a teacher to come out to our home to work with him. Thanks Dana! Thank you too to Miss Leslie and Miss Barbara.

Dad
Dad’s back pain is back. He spoke to the Dr Monday and he told him to alternate pain meds until he sees him on Wednesday.You can see it in his face he is not feeling as well. Thank you to all those have visited. I am sure he is glad that football season has started. He looks forward to the games. Emily also keeps him on his toes. If he gets out of his bed she jumps in as soon as he is out of sight or takes off with his pillow. His weight was 120 on Monday!! He is going to his CHIRP meeting tonight at church. Mom is going out with the “the girls”.

Dori
She saw her Dr on Monday and the Dr felt the lump was not cancerous. The Dr did not want to do anything at this point since she is so far along in her pregnancy (due around the end of November). The Dr said that unless something changes with the lump to come back in January and have it rechecked then.

Check out our new pictures.
Thanks again to everyone, love The Bunkelmann Family

Tuesday, October 08, 2002 at 09:24 PM (CDT)

FIRST thank you to all whom participated one way or another in the Golf Tournament. It was a success. We had a lot of fun. Seth was able to be there for the luncheon. They let him ride around in the golf cart (with daddy) before lunch. He thought that was pretty cool. He kept telling daddy he wanted to go play golf. Hmmm we may have to look at lessons. The Jupiter -Tequesta Kiwanis were a wonderful host and very generous. A very special thank you to Dr Steve and Debbie Pullon who made Seth part of this event. We are very grateful!! Thank you too to Miss Lori, Eric, Kathy, Pam, Amy, Zoey, and Kelley (hope I did not forget anyone) for spending the day with us.


Seth
Dr Gowda saw Seth today for his counts. The good news is his bone marrow (from the aspiration) was clean no signs of the disease. Thank you God!! His ANC today was too low to continue chemo so he stopped everything (including the 6MP at home). His ANC has to be 750. Seth’s was 540 today. His white cell count is down to 1.4. However his platelets were high which is good. Dr Gowda’s concern is the time between chemotherapy because his counts are too low to continue. He wants Seth to come back on Friday to check his counts again. He said pending on what they are he may resume chemo at a reduced dosage. He said the drugs are so toxic to his system his body is taking a long time to rebound. He does not want to continue to pound his weakened immune system (the protocol does not allow it). Our concern of course is that he does not relapse because of the down time. He did a lot of vomiting today so he is back on Zofran. He lost a pound and half since last week. He back to 26 ½ pounds.


Dad
We found a hospital bed for dad through the Coalition for Independent Living Options (CILO). I met with Sue who I knew through the Early Intervention Program. She saved 2 beds for me to check out. Some wonderful folks through our church delivered the one I picked the same day. Dad said he is sleeping much better because he can elevate his head and legs as needed. His weight today was 119. Go Wally!!! The Dr told him would start to lose his hair (I know…what hair?) with the new chemo he is on.


Dori
My sister found out she and her husband Todd is expecting a baby girl in December (she is hoping for the end of November). However she recently found a lump in her armpit. Her Dr sent her for a sonogram today and they have the results next week. Please keep them in your prayers.

Prays needed For A Special Friend
Please say an extra pray for a friend and his family you may already know Robert Mitchel. He is 11 years old and has Leukemia.They are a wonderful family. You can click on to his web site at www.caringbridge.com/fl/robertmitchel

Be sure to check out our new photos!!

Wednesday, October 02, 2002 at 07:31 PM (CDT)

Hi everyone, Seth finally started his 3rd phase of his protocol on Tuesday Oct 1st. This phase should last 55 days. This phase Dr Gowda said should be easier on Seth’s system. I thought Seth’s ANC count had to be 500 in order to restart chemo. Dr Gowda said it had to be 750. Seth’s was 504 on Oct 1st. Since Seth is behind in his protocol Dr Gowda also looked at another number called APC. His APC was higher so I guess it all worked out in the math. Seth’s white blood cell count went from 1.5 to 1.6. It is going up but it is still low. A normal white cell count range is 4.1 to 10.9. Dr Gowda decided to also check Seth’s bone marrow (since his white cell count is still low and ANC coming up so slowly). Seth had his spinal chemo (ARAC) and a bone marrow aspiration on the Tuesday afternoon at 2:00 (our morning started at 8:00). We will have the results of the bone marrow aspiration in a day or two. He seemed to handle it all well. However on the way home (after I picked up Emily at my mom’s) he started vomiting. It hit me then that he never had his Zofran (anti nausea med) prior to the spinal tap. I turned around to go back to my parent’s since it was the closer. I called and talked to Tracey (Seth’s nurse that day) and asked about the Zofran. She said it was not ordered but to go ahead and give the Zofran we had at home. I called Scott to bring down the Zofran, change of clothes and the other car seat. Seth continued to vomit for the next 30 minutes. Once he got the Zofran in him he seemed to calm down. I am making sure I keep up on the Zofran this time. We finally got home around 8:00PM. He also started back on his home chemo, the 6MP pill. He will take this pill everynight. He can not eat an hour before taking it and 2 hours after. Food disrupts the absorption of the drug. Today is Wednesday and he is running a low-grade temp. We will keep an eye on that. We go back next Tuesday to check his counts again. His weight is holding at 28 pounds. He should be able to attend the Golf Tournament on Saturday (the luncheon).


Emily
Many of you have asked how Emily is doing. My answer usually is she is 2…very 2. She is also a budding artist. Her work can currently be seen on (and I don’t mean hanging on) our hallway walls, her door to her room, on her dresser and closet doors. She has also displayed her work on my parent’s refrigerator, kitchen floor, and desk and family room walls. She usually likes to use pen or magic marker. You can hide them (pens, markers etc.) and she will find them. She also has a traveling show from time to time. This display is usually her belly, legs and arms. I have to thank my sister Dori for that one. She taught Emily how to paint her toenails (they were using washable paints at the time). Emily now will use anything to paint her toenails (and I mean ANYTHING) even her oatmeal. She will start on her toes and work her way up. She really keeps us laughing. She calls Seth (and this is all one word) “myseth”.





Dad
He is about the same. He did go to a CHIRP meeting on Tuesday night at our church and really enjoyed himself. My mom also went out with some of her friends that night.
We are currently looking for a hospital bed for him. He is having trouble getting comfortable. I am going to look at 2 tomorrow at the Center for Independent Living. A friend had located them for dad. Some wonderful folks from church will deliver it for him if one of the beds is suitable. Dad saw his Dr today and the Dr said there was no cure for his cancer. The Dr did tell him he could go in to remission. He said the prognosis is still the same, it could be 6 months it could be 6 years. The Dr said it is difficult to say. Dad’s weight is up to about 116.


I will honestly say these last many days have been emotionally difficult. I just to say thank you to ALL of you for your prayers love and support!

The Bunkelmann Family
Ruthie, Scott, Seth and Emily

Saturday, September 28, 2002 at 11:03 AM (CDT)

GOOD NEWS
Dr Gowda saw Seth on Friday the 27th. The good news, his counts are starting to go up. His ANC went up to 405 (it was 192 on Tuesday). Dr Gowda feels the Dilantin was one of the reasons his counts remained low. He is being weaned off of it. He was put on Dilantin when he had his seizure back on July 20th. Dr Gowda feels that Seth will be ready to start phase 3 of his protocol on Tuesday Oct 1st. He should have a spinal tap with chemo that day as long as he counts continue to rise (ANC of at least 500).
His weight has continued to maintain around 28 pounds. Dr Gowda feels as long as his weight maintains at this level and he does not lose there is no need for the feeding tube at this time.

Golf Tournament
The Kiwanis Club of Jupiter-Tequesta 5th Annual Golf Tournament takes place this coming Saturday, Oct 5th. It will take place at Old Trail at Jonathan’s Landing. As you may know some of the monies raised will benefit the Seth Bunkelmann Fund. For additional information please call Bert Clattenburg at 561-746-5186 or Gene Fusaro at 561-575-4749. You can also contact Scott or Ruthie. It is going to be a lot of fun. There is a continental breakfast, door prizes, awards, raffles and a BBQ luncheon. I will be there and we hope Seth will be there (with daddy) for the luncheon if his counts are high enough. Thank you to all of you who have already signed up to participate. Also don’t forget Sunday morning the 29th (if you are awake that early) I will be on WRMF (97.9) with Jennifer Ross regarding the Golf Tournament and Seth. The Sunday morning show airs about 6:00AM.


My Dad
Dad’s cancer was diagnosed at a stage 4. This is the more severe staging. He asked the Dr about prognosis. The Dr said it could be 2 years, it could be more or it could be less. The Dr said it is too difficult to tell. Dad has been feeling better the last couple of days. However he is still feeling very weak. His weight has been hanging at around 113 pounds.
Thanks to all of those whom have visited. The positive visitors help not only my dad but my mom as well.
Please say an extra pray for my folks. For everything they are going through. This past year has been VERY difficult for them in many ways. My mother has had some other burdens she has had to endure as well. She is a better woman than I am in dealing with it Please say an extra special pray for her!! Thanks!!


Thank you for all the prayers and support,
Scott, Ruthie, Seth and Emily

Wednesday, September 25, 2002 at 09:09 PM (CDT)

Hi everyone. I wanted to wait until after my dad’s doctor appointment today to update.

First a great BIG THANK YOU to all of you who walked and/or donated money to the Light The Night walk. It was a lot of fun. Scott and I really enjoyed the event. Miss Lori, one of Seth’s teachers raised over $1000. WOW!!!! She and her husband Eric both walked with us. She also made wonderful shirts for Scott and I with Seth’s sweet little face on it. Seth’s friend Damian and his parents also raised money and walked with us. Seth’s Uncle Todd, my sister Dori, and her sister in law Mari and her 2 little ones were also there, raised money and walked. “My group” of friends Marissa, Brenda and Stephanie all raised money and walked. According to “my group” we walked 10 miles and we did it in less than an hour (that is the story and I am sticking to it). If you watched the 11 o’clock news that night on channel 25, you might have seen Scott on there walking with us. Thank You again everyone!!!!!!!!!!!!!!

This coming Sunday the 29th I will be on the radio with Jennifer Ross of WRMF (97.9) at 6:00AM (I know that is a wee bit early). Thanks to my friend Marissa, she emailed Jennifer all the information awhile back and Jennifer requested the interview. This interview is for the up coming Golf Tournament. As you know some of the money will go to the Seth Bunkelmann Fund. This tournament is the Kiwanis Club of Jupiter-Tequesta 5th Annual Golf Tournament. If you are interested please call Gene Fusaro at 561-575-4749 (he is also part of the interview) or Bert Clattenburg 561-746-5186. The Golf Tournament will take place at Old Trail at Jonathan’s Landing. There is a continental breakfast, BBQ luncheon, door prizes, raffles, other prizes etc.

Now for Seth,
We went back to see Dr Gowda on Thursday the 19th in order to start phase 3 of Seth’s protocol. The requirements to go in to phase 3 are as follows
1. must be in remission
2. Platelets count higher than 75.
3. ANC over 500
Seth is in remission, his platelets were 74 (close enough I guess) but his ANC had dropped to 240. Just 2 days before it was over 2000. Dr Gowda wanted to see Seth again on Tuesday the 24th to see if his counts went up. On Tuesday Seth’s platelets went up to 117. However his ANC went down to 192. Seth’s protocol like all the other children with cancer is based on a study controlled by the C.O.G. (Children’s Oncology Group). This is a nation wide group. Dr Gowda can not make a change to Seth’s protocol with out consulting the group. This way where ever we go (or anyone for that matter) in the United States, Seth would get the same treatment protocol. So in other words if something were found to work better at St Jude’s Hospital then it would put in to the study. I think I explained this right. We have spoken to a number of people including Dr Schechtman and all agreed with the study. Today is day 61 of phase 2 that was only supposed to be 34 days.
We just got off the phone with Dr Gowda. He spoke with COG and they feel the suppression (low white counts) might be from all the antibiotics Seth has been on. The plan is to check his blood on Friday the 27th (blood test in his office). If it still low Dr Gowda will check it again on Monday. If it is still low he will do another bone marrow check on Seth. He had a bone marrow aspiration when he was first diagnosed with cancer. There was no cancer found in his bonemarrow at that time. Dr Gowda said he does not expect to find it there. He just wants to get a check of the marrow. OK this mommy is a little on the edge now. I will keep everyone up dated.

A number of you have asked about a special account for Seth. We did start one at the Bank of America. According to the branch manager (PGA and Military Trail) Marie Yates (561-799-0776) she said anyone can go to any branch of Bank of America and make a deposit to the Seth Bunkelmann Fund.


My Dad
He is strength level is still low. He did restart chemo today. The Dr gave him some new meds that we hope will increase his strength. His counts continue to be good. Visitors have been helpful (contact my mom as there are health restrictions). His weakness continues to be his big battle. It is very obvious that it this frustrates him.


Thank you again for all your love and support!!
Scott,Ruthie,Seth and Emily

Wednesday, September 18, 2002 at 07:22 PM (CDT)

We are finally home!!! Seth, for those who did not know had been in St Mary’s Hospital for the past 11 days. We just got home late yesterday afternoon. Let me catch up since the last up date on September 4th.
Thursday night September 5th Seth fell off a small wooden stool. He hit the back of his legs on the edge and broke the blood vessels just below his bottom down to his knees. He looked like he had road rash. He also had several spots on his chest where it broke the skin. We were back in Dr Gowda’s office the next day for chemo and they checked out all his injuries. He bruised so easily because his platelet count was dropping. His count that day was 30. A normal platelet count should be between 150 and 450. They usually give a transfusion below 25. On Saturday the 6th Seth would not bear weight on his left foot. Scott and I checked it out and found the bottom of his foot to be a little red and raised. We watched it for a while and then decided to take him over to the hospital and asked one of the nurses on the Peds Oncology floor what they thought. Scott took Seth (8:00PM) and I stayed home with Emily. Nurse Karen was there and she called Dr Gowda. He sent them to emergency room. They looked at his foot, drew blood for counts and did a chest x-ray (standard procedure). Scott called me and said they found mild pneumonia and a temp of 101. They also felt he had an infection in his foot. His platelet count was 11.Seth was being admitted for mild pneumonia, infection in his foot and low platelets. He had his platelet transfusion during the night. Emily and I took some things to Scott and Seth and got home around 1:00AM Sunday.
On Sunday Dr Bufo (surgeon) came and looked at his foot. Dr Bufo drew a circle (with a pen) around the infection in order to determine if it was spreading. The circle went around the bottom of his foot up around his ankle. I feel asleep after Dr Bufo left and Seth was playing on the couch in his hospital room. A young volunteer named Kevin came in to visit and I awoke. When I sat up Seth’s infected area appeared to be covered in blood. Kevin saw the same thing and ran and got a nurse. I could hear a nurse running down the hall. By the time the nurse reached the door I realized Seth had taken a red magic marker and neatly colored in the circle that Dr Bufo had drawn. Everyone had a good laugh over that. We got most of the marker off.
On Monday Dr Mateo from infectious diseases came in to look at his foot. He stated he was going to order an MRI to make sure the infection was not coming from the bone. He felt that it was coming from the bone or the soft tissue. Seth’s white blood cell count was so low that he did not have anything to fight this off. Dr Mateo put Seth on 2 heavy-duty antibiotics. His ANC was down to 166.
On Tuesday he had an MRI of both legs. His white blood cell was .4 (normal is 5. to 14.5). His ANC was down to 76. His foot was swollen and red.
Wednesday his ANC was down to 8 (normal is 4000). Dr Gowda also started Seth on injections to increase his white blood cells. He got one a day in his leg for 5 days. The MRI came back and the bone was not involved in the infection in his foot. Dr Gowda also ordered Seth’s follow up CT scan and Gallium scan that were due at the end of this phase of his protocol. Dr Green a dermatologist came to look at Seth’s foot. He felt it was nothing more than a blood blister. No one else agreed with this.
Thursday Dr Mateo wanted to have a biopsy completed however Dr Bufo did not want to open his foot since his counts were still so low. Everyone except Dr Mateo agreed on waiting.
On Friday Seth had his CT scan and his injection for his Galium scan (which would be done on Monday).
On Saturday Seth’s counts were starting to go up. Dr Gowda came in and told us that Seth’s CT scan was clear and that Seth was in REMISSION (this is different from CURE). This was awesome news. HOWEVER this does not change his chemo protocol. He will have to complete his chemo as stated in his current protocol. This we hope and pray will keep him from relapsing.
Dr Bufo also came in on Saturday and said his foot looked like it was getting better probably because his white blood cells were going up and the antibiotics.
On Monday Dr Mateo still wanted a biopsy. Neither Dr Gowda nor Dr Bufo wanted to touch because it seemed to be healing so well. This was day 10 of being at St Mary’s. Dr Gowda asked for us to give him one more day of watching and maybe we could go home on Tuesday. Seth also had his Galium scan done and it came back clear as well. He stated there was increase uptake in the bone where the tumor started but this could have to do with the way that area was healing.
On Tuesday Seth’s ANC was up to 2921. His white blood cell count was up to 5.7. Dr Gowda gave Seth his walking papers. His weight was up to 28 pounds. Dr Gowda had ordered TPN (feeding through his port) at night while Seth was sleeping. As I mentioned before Scott stayed with Seth during the night and I did the days. Emily stayed at my mom’s. I would go back there at night and sleep (with Emily)! THANK YOU GOD FOR MOM AND DAD!!!
Seth should start phase 3 of his protocol tomorrow. It starts with a spinal tap. I think there are only 2 this phase. The rest are oral chemos. Keep him in your prayers.
If anyone has ever visited the 2nd floor at St Mary’s where the oncology/hematology kids stay, you would have noticed that the ceiling is made up of individual tiles. The kids can paint or decorate one of them. The wonderful woman in charge of the playroom (among other things) Ms Alfreda had Seth do his. Just guess what he painted?! It is suppose to be hanging somewhere near the nurse’s station. We will take a picture of it next time and put it in the web site.
Seth was glad to see some old friends Jenna, Jessica and JoJo (Happy 4th Birthday). Seth also made some new ones Maria and Timmy. Please keep all his friends (Cam and Nate too) in your prayers as well!!
Also on the web site if you go back and read the history you may notice that September 4th entry is in there 4 or 5 times. Sorry I got a little carried away. We have not figured how to delete the extra ones yet

Check out the new photos in the photo album.

LIGHT THE NIGHT WALK For those of you who are walking we are going to meet anytime after 6:00 PM downtown on Clematis by the fountain and across the street from “Pizza Girls” restaurant. I will have my cell phone. The walk starts around 8:00PM. We will head over around 7:45 so if you want to walk as a group. If you still need to hand in money it is best to get there close to 6:00 to avoid the long lines. Our team captain Tricia Doyle will have Jessica’s stroller lit up with a rope light. I will have some buttons with Seth’s picture if you are interested in wearing them during the walk.
Golf Tournament is on for Oct 5th, there is additional information on August 21st journal entry or just call us. Remember some of these monies benefit the Seth Bunkelmann Fund.

Seth Bunkelmann Fund there is a special account set up for Seth at Bank of America. The branch manager (the one at PGA and Military Trail) Marie Yates (561-799-0776) stated anyone could go to any Bank of America and make a deposit to that account. Just state it is for the Seth Bunkelmann Fund.


My Dad
My dad has finished his radiation and they are unable to tell to date how much it has helped. He went in today to see if he was going to start chemo again. Although his counts are good the Dr put off chemo for another week because the Dr felt he was too weak. The Dr gave him a shot of something to help get his strength back (there is a commercial about it where a grandfather wants to buy his grandson a big boy bed). They also took a chest x-ray to see how things are going. Mom was concerned because he had been coughing more. The results should be in in the next day or so.
His weight is starting to go back up…a little at a time. He still needs “cheering up visitors”. Remember there is health restrictions so check with my mom. Thanks to all of you who have visited, helped out and of course the PRAYERS! Thank you Mr. Gates for “motivating” him to go on the walks and the lawn work. June for arranging all the transportation to chemos and radiation (and of course all the drivers). Mr. Martinson the plumbing and electric work….if I have forgotten anyone …sorry …..But thanks for being so neighborly!!!!

Please sign the guest book whenever you visit to check on Seth (or my dad..I make sure they the message). We enjoy your messages!!

Thanks again for all your prayers and support!!! Love the Bunkelmann Family

Wednesday, September 04, 2002 at 10:27 PM (CDT)

Seth finished last weeks chemo ok. He had some vomiting on and off. His eating was up and down.
He went in this past Tuesday to see Dr Gowda and his ANC was 648. Dr Gowda said since he was not getting Cyclophosphamde (CPM-chemo) Seth could get his other chemo today even though his count was low (and we did not have to be in over night). Seth's HGB (hemoglobin) was low so also needed a blood transfusion. He had his spinal tap around 1:30. Once we got back to his room he had his 2nd chemo and the nurse started the blood transfusion. We left the hospital around 6:00PM. He port will remained accessed for the next three days. His weight hangs around 26 pounds.
Seth went back to Dr Gowda's today for chemo as we will Thursday and Friday.
We are not sure what the next week brings as Dr Gowda wants to review his protocol and will follow up with us.
He is doing well. He talks alot about going back to school and seeing his friends. We can't wait till he can do that too!

My dad finished up his radiation treatment last Thursday. He went back for chemo today and the Dr decided to give his body a rest for the next two weeks. His counts are good although they are starting to drop. His eating is way down but the Dr expected it. The Dr hopes the rest will give dad some time to get some strenght back.
He NEEDS "cheering up" visitors. You know as they say "laughter is the best medicine". There is health restrictions in order to visit him so check with my mom first. You are welcomed to contact me as well.
Thank you Mr Gates, our wonderful neoghbor of many years...for being my dads walking buddy at night!!!

*LIGHT THE NIGHT WALK*
That event is Sept 20th! It is sponsored by the Leukemia and Lymphoma Society. Scott and I are taking donations. There is a web site at the bottom of this page for more information or CONTACT US!

*KIWANIS GOLF TOURNAMENT*
That event is Oct 5th! Some of the money will benefit Seth!! See the journal entry August 21st for more details or CONTACT US!

Thanks to all of you for your love, prayers and support!!!!
The Bunkelmann Family

Thursday, August 29, 2002 at 08:17 PM (CDT)

Hi everyone. Sorry it has taken me so long to update but between Seth and computer problems I am just now getting to it.

Seth finally went in for chemo on Tuesday August 27th. His counts still were not high enough. His ANC count was 372 (needs to be 750). However there was another count Dr Gowda looked at called APC (I forgot what that stands for) and that was 720. Dr Gowda said he did not want to put off chemo any longer. Seth's weight at Dr Gowda's office was 27 pounds.
We knew Seth would be in overnight with this treatment because he was getting CPM (cyclophosphamide). He needed to be well hydrated with that chemo. When Seth is in over night I stay with him during the day (during the week) and Scott gets there around 7PM and spends the night. I then go to my mom's where Emily is and spend the night.
Seth had his spinal with the ARAC finally around 2:30. He did real well with having no food or drink since 5:30 that morning. He had his other 2 chemos later that day.
Seth was happy to see some of his friends he had not seen since the last time he was in the hospital. He enjoyed his time in the play room as well. His weight at the hosptial was 26.2. The nurse said that is the scale to go by. Seth is also taking Zofran to help with nausea.
Dr Gowda took Seth off Bactrim which helps prevent the PCP pneumonia. He felt this drug might be one of the reasons why Seth's counts were not coming up. Instead Seth is on another drug he takes via the nebulizer once a month. He had the treatment the next morning before discharge. He had to be in isolation. I had to stay in there with him and hold his hands down so he would not take off the mask (I had to wear a mask too). He screamed the entire time. The therapist said it was good because it made him take in more of the meds. His weight at discharge was 26 pounds.
Seth and I left the hospital before noon but had to be back to Dr Gowda's by 4:20 for his next round of ARAC. This protocol calls for spinal 1 X a week followed by 4 days of ARAC IV (via his port). He left the hospital with his port accessed (tube hanging from his chest) in order to give him the ARAC over the next couple of days.
Seth did not eat anything on Weds. morning at the hosptial. He ate maybe 2/3 of a doughtnut and a few soup crackers before we saw Dr Gowda. He ate a few fries that night but not much else.
He went to sleep ok but woke up around 5:00AM crying for daddy and then started vomiting. Scott finally got him back to sleep. He slept till about noon. I woke him up trying to get him to eat and get his meds in to him before we had to be at Dr Gowda's for chemo at 3:20. He ate a few soup crackers again. We are really pushing water because he needs alot of hydration with this chemo.
A wonderful friend gave him a wooden Thomas the Train toybox full of trains and tracks. He got it when he was discharged from the hospital. That has kept him distracted. You can tell by looking at him he is not himself. He also has been running a low grade temp. He has his last ARAC injection in to his port tomorrow at 2:20. This whole process starts all over again next Tuesday. If his counts are good.His weight today at Dr Gowda's office was 26 1/2 pounds.

My dad had his last radiation treatment today. He is still very tierd. His weight is down. We hope he will bounce back in week or so after being off radiation. His chemo will continue on Weds. at Good Sam. Mom is working hard at trying to get him to eat.
THANK YOU so much to all the wonderful folks who took dad back and forth to radiation and chemo. It helped us a great deal!!!!

Thanks to all of you who have signed up for the Light The Night walk (Sept 20th)and those who have donated money. If you need additional information please see the web link up at the bottom of this page.

The Golf Tournament (Oct 5th) is coming along. If you need additional information contact us or see the journal entry dated August 21st.

Thanks to all of you for your support and prayers. We could not get through this with out you.

Look for new photos very soon. I will leave the one of Papa and Seth but add 2 new ones.

Thanks again,Love the Bunkelmann Family
Scott,Ruthie,Seth and Emily

Friday, August 23, 2002 at 07:00 PM (CDT)

Seth's counts continue to be too low to continue chemo. His counts today were 530. They need to be 750. Dr Gowda cut back on his Dilantin to see if this will help bring up his counts. The good news is the counts are going up. We are concerned because he is about 3 weeks behind in his protocol. When this all first started we calculated Seth would be through the 6 months of intensive chemo by Dec 10th. It is now going to be the beg. of Jan. We had hoped it would be done before Christmas. Oh well whatever it takes. We will try again this Tuesday August 27th.
His spirits are good and he is gaining weight. Today his weight was 26 and 3/4 at Dr Gowda's office. He always brings something to do with trains to show Dr.Gowda when he goes.

My dad is doing well. He should be through all the radiation by next Tuesday or Wednesday. His counts have been so good the Dr wants to increase his chemo once the radiation is complete.He said the chemo is killing the cancer cells. His weight is an issue but the Dr said this will get worse before it gets better. He is VERY tierd alot. His sister Ruth (whom I am named after) was here last weekend with my cousin Debbie to visit. They are from Wis. I know he really enjoyed the visit.

Please see the entry from August 21st regarding the Light the Night walk and the Golf Tournament. Some wonderful friends made some great flyers with Seth's picture if you are interested.
Thank you all soooooooo much for all the love, support and prayers
Love Scott,Ruthie,Seth and Emily

Wednesday, August 21, 2002 at 12:26 PM (CDT)

This was suppose to be part of yesterday's journal but Seth hit the button before I could finish or even sign off.
The main information I wanted to share is about 2 up coming events.
(1) Light The Night Walk
This is put on by the Leukemia & Lymphoma Society. This will take place on Sept 20th along Flager,starting at Centennial Square and East library grounds. Registration is at 6:00 and the walk starts at 8:00. People who walk will carry an illuminated balloon. Scott and I are planning to walk. It open to everyone. The monies rasied go to the Leukemia and Lymphoma Society. Scott and I are taking donations (no set amount). We are walking under the organization of St.Mary's Hospital and Tricia Doyle is our team captain. Her daughter Jessica has Leukemia (she is a really cutie!!). If you want more information just go to this web site www.lightthenight.org
(2) The 5th Annual Kiwanis Club Of Jupiter-Tequesta Golf Tournanment. They raise money every year for local programs (like the Birthing Suite at Jupiter Medical Center). Thanks to some WONERFUL friends Seth will benefit from this tournanment. Some of the monies raised will go to a special account that we have set up for Seth at Bank of America (to help with expenses since I can no longer work full time).
The tournanment will take place on Oct 5th at Old Trail at Jonathan's Landing. For more information PLEASE contact us or Bert Clattenberg at 561-746-5186 or Gene Fusaro 561-575-4749. I have flyers for anyone interested.
Well it starting to storm out and I don't want to lose this information from a power outage.
Thanks again everyone for all the support!!!!!! Love Ruthie,Scott, Seth and Emily

Tuesday, August 20, 2002 at 02:44 PM (CDT)

Seth was seen by Dr Gowda today and his counts are still too low to continue chemo. His ANC (Absolute Neutrophil Count..the bodies ability to fight infection)count must be greater than 750. His count today was 300. His white blood cell count is very (white blood cells fight infection)low. Dr Gowda took him off his Bactrim (that prevents pneumocystis pneumonia) to see if that will help bring up his counts. Seth goes back on Friday (the 23rd)to see if his counts are high enough. He is about 2 weeks behind in his protocol.
His weight however is going up. His weight today was 26 and 1/4. His food of choice right now is Cheerios (multi grain)and milk. He still likes his pink doughnut, peanutbutter cookies and fries.He has been asking to eat and saying he is hungry.
He continues to get stronger everyday. He is getting up from the floor with less trouble.

Friday, August 16, 2002 at 07:58 PM (CDT)

We took Seth to see Dr Gowda on Thursday and his blood counts were still too low to start chemo again. We will try again on Tuesday the 20th. He will be in overnight if his counts are good. Seth's weight hangs around 25 and half pounds. His eating has been better. He is getting stronger everyday. His behavior has changed alot recently. He is very agitated,demanding and picking at his sister. They said it is to be expected(regression) with everything he is going through.
My fathere is doing well but very tierd. The radiation is zapping the little energy he has. He has had some problems with medications(causing him to have hallucinations). The Dr said his counts have been good and the chemo is killing the cancer cells. My mother (not sure how she does it) is hanging in there. They are getting alot of help from all thier wonderful friends.
Other REALLY good news is Dori's(my sister) amniocentesis came back showing no birth defects with baby to be. Baby Neary is due early Dec. She and her husband Todd have had a real diffcult time getting pregnant and then hanging on to this pregnancy.
There will be a golf tournament on Oct 5th were some of the money will benefit Seth. It being put on by the Jupiter/Tequesta Kiwanis Club. Again it is Oct 5t at Old Trail at Jonathan's Landing. I will give more information soon. If you are interested please let me know.
Thank you again for all your prayers and support. Love and Peace Scott,Ruthie,Seth and Emily

Wednesday, August 14, 2002 at 08:44 AM (CDT)

Seth saw Dr Bret Baynham 08/13/02 regarding the tumor in his leg. The tumor still shows up on the xray. Dr Baynham said everything looks good and the outside bone is no longer involved.(at least that is what I understand)
We go in on Thursday August the 15th to check his counts. We hope they are high enough to start chemo again. He will be in overnight if he can have chemo. He has additional chemo that day (Friday) and then again on Saturday and Sunday.
I feel alittle sad today because it should be his first day back to school. He saw one of his schoolfriends yesterday at Dr Baynham's office and has talked alot about school since then. Some of his friends graduated on August the 2nd and they sang "Seth's been working on the railroad" since he could not be there. How sweet!!!
Seth is doing well as are we.

Wednesday, August 14, 2002 at 07:46 AM (CDT)

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