Candlelighters
By Louis Luzzo
We take them for granted. Myself included. They make a mess in their room. They spill juice on the rug. They do the things that drive us crazy. We are always on the run, having to schlep them to and from school. Then it's off to soccer practice or ballet. They don't eat right, eating the whole bag of Doritos when we specifically told them to eat just a few.
They give us a hard time brushing their teeth or combing their hair. They just about drive us crazy and never give us a moments peace. If we have to hear the words, 'but Mom,' or 'but Dad' one more time we'll pull our hair out.
While it is just an unimagined scenario for most of us, Klair Snellbaker, founder of Candlelighters of Southwest Florida and the rest of the mothers and fathers who have lost their children to cancer, it is very real.
What would we do? How would we handle it if the doctor said the words, 'cancer', or 'lymphoma' or 'leukemia?' Some of us would shrivel inside ourselves, asking, "Why me?" Some would get angry lashing out that "this wasn't fair."
Few would be able rise up out of what is probably one of the worst scenarios any of us could face, that being the loss of a child, and handle it with the courage, hope, compassion and thoughts for others in the same situation as did Klair.
This, is her story.
What would we do? How would we handle it if the doctor said the words, 'cancer', or 'lymphoma' or 'leukemia?' Some of us would shrivel inside ourselves, asking, "Why me?" Some would get angry lashing out that "this wasn't fair."
Few would be able rise up out of what is probably one of the worst scenarios any of us could face, that being the loss of a child, and handle it with the courage, hope, compassion and thoughts for others in the same situation as did Klair.
This, is her story.
I'm talking of course about our sons and daughters.
There is no question that we love them, that goes without saying. But let's face it, sometimes we wish as
parents, they would just
leave us alone, you know, "Calgon take me away!"
We buy them video games
so that we can have a
moment to ourselves. We
send them to the movies or park them in front of the TV day in and day out so that we can steal a little peace and quiet for ourselves. We are
not being selfish or uncaring. We are not saying that we don't want to spend time
with them. We are just saying, sometimes we need a rest, some space. A little 'Me time.'
What if your child walked
out the front door, or closed the door to their room, or worse yet, simply dematerialized right before your eyes, and from that moment on you never saw them again?
There is no question that we love them, that goes without saying. But let's face it, sometimes we wish as
parents, they would just
leave us alone, you know, "Calgon take me away!"
We buy them video games
so that we can have a
moment to ourselves. We
send them to the movies or park them in front of the TV day in and day out so that we can steal a little peace and quiet for ourselves. We are
not being selfish or uncaring. We are not saying that we don't want to spend time
with them. We are just saying, sometimes we need a rest, some space. A little 'Me time.'
What if your child walked
out the front door, or closed the door to their room, or worse yet, simply dematerialized right before your eyes, and from that moment on you never saw them again?
Klair Snellbaker
Originally from Savannah, Georgia, Klair moved to Fort Myers, Florida in 1977. It was the idyllic American dream. Loving husband, two kids, two cars, a house and a dog. Life was perfect.
Her former husband was away on a business trip, it was Memorial Day weekend and her daughter Erin, who was 2 years old, spiked a high fever. As it was a holiday weekend, with no doctors around or available, Klair decided to just watch her, as you would any normal sickness with a young child. By Tuesday morning, not only was she still having a fever, she had also developed a limp. After taking Erin to the local pediatrician’s office, they were told it might be some type of bone infection. They were given antibiotics and told to administer them to her around clock. When things still continued to develop and the fever persisted, they recommended that she be placed into the hospital, in order to perform some tests.
Little Erin had a series of biopsies but the doctors were left scratching their heads. They just didn’t know what had happened. Klair explains, "She would get better and we would go home for a couple of weeks, then it would start up again. We would be back to the hospital or the doctor’s office with yet another concern, another complaint."
I can remember sitting in the hospital room and asking one of the younger pediatricians, "Could this be leukemia?" He said, "Oh no, nothing so serious."They continued to search for what was going on for 9 months. At that point Klair and her husband decided to go to one of the best treatment centers in the country, the Mayo Clinic, in Rochester, NY.
Klair was concerned because so many of the chemotherapy drugs have very high toxic levels. She was also afraid that if this didn't work, there were just no more drugs available.
The doctor told Klair the next option would be to go to a bone marrow transplant. She recalls,"That was not the answer any parent ever wants to hear, because with any type of transplant, especially one that occurred 25 years ago, if it didn’t work, there was nothing else. You might be signing your child’s death warrant. What mother wants to do that?"
She asked the doctors to try a few more months of chemotherapy, but after getting no results Klair reluctantly agreed to the last resort, a bone marrow transplant.
Unfortunately, it proved to be unsuccessful and two months later, 3 yr old Erin passed away at the hospital with her mother at her side and as Klair put it, "A lot of caring, loving people surrounding her."
For those of us blessed with happy, healthy children, can we really imagine what it would be like to lose our 3 year old? In the normal course of life, we are not supposed to survive our children. We are supposed to pass from this life having seen them grow and mature, starting families of their own. We are supposed to enjoy our grandchildren and when we leave this mortal coil, be surrounded by those we raised and love, knowing that they will carry on. Not so for many moms and dads in Klair's situation.
She continues."I went back at that time to an empty house. I had become, over those years, a single parent." The stress had proven too much for Klair and her husband and they had divorced.
She states, "I had another child and I had to decide what to do. I had made many friends during the course of Erin's treatments. I’d introduce my mom to someone and she had this famous line, "What does their child have?"
The doctor told Klair the next option would be to go to a bone marrow transplant. She recalls,"That was not the answer any parent ever wants to hear, because with any type of transplant, especially one that occurred 25 years ago, if it didn’t work, there was nothing else. You might be signing your child’s death warrant. What mother wants to do that?"
She asked the doctors to try a few more months of chemotherapy, but after getting no results Klair reluctantly agreed to the last resort, a bone marrow transplant.
Unfortunately, it proved to be unsuccessful and two months later, 3 yr old Erin passed away at the hospital with her mother at her side and as Klair put it, "A lot of caring, loving people surrounding her."
For those of us blessed with happy, healthy children, can we really imagine what it would be like to lose our 3 year old? In the normal course of life, we are not supposed to survive our children. We are supposed to pass from this life having seen them grow and mature, starting families of their own. We are supposed to enjoy our grandchildren and when we leave this mortal coil, be surrounded by those we raised and love, knowing that they will carry on. Not so for many moms and dads in Klair's situation.
She continues."I went back at that time to an empty house. I had become, over those years, a single parent." The stress had proven too much for Klair and her husband and they had divorced.
She states, "I had another child and I had to decide what to do. I had made many friends during the course of Erin's treatments. I’d introduce my mom to someone and she had this famous line, "What does their child have?"
Klair remembers, " Here my daughter and I sat on a cancer ward. I looked at all these children with bald heads, so thin and frail."
I had never been exposed to children with cancer. I thought, "Oh gosh, isn’t this awful, these poor kids with cancer."
Unfortunately, Erin was mis-diagnosed again and they were sent back home. "They said, 'Nothing was wrong.' But as a mother, I knew something was not right with my child. I started sending slides and such all over the country, to various doctors."
They finally got in touch
with someone who was at a children's cancer center here in Florida who told them, 'Get that child to the closest cancer center. I think she has something called neuroblastoma.'
"We went to St. Petersburg to a doctor there. Within 24 hours she had a positive diagnosis of having cancer."
This particular cancer is a malignant tumor of immature nerve cells that usually starts in the autonomic nervous system or adrenal gland and spreads quickly, most often affecting young children.
Klair recalls, "We were faced with, 'Okay, we have a diagnosis. What do we do now?''
Radiation came first. They hoped to shrink the tumor enough to go in and remove it. It didn’t work. The tumor did shrink, but when doctors
went in and peformed
surgery, the tumor was entwined in Erin's inner thigh and pelvic area. "For a two year old, it really wasn’t possible to remove the tumor in full." They began a regiment of chemotherapy, which lasted just over a year and a half. "We had very
good results from that but we knew with the type of cancer she had, that it could reoccur. "
Being neuroblastma, it could also spread to other areas. She remembers sitting down and talking with the doctor asking, "Where do we go from here?"
I had never been exposed to children with cancer. I thought, "Oh gosh, isn’t this awful, these poor kids with cancer."
Unfortunately, Erin was mis-diagnosed again and they were sent back home. "They said, 'Nothing was wrong.' But as a mother, I knew something was not right with my child. I started sending slides and such all over the country, to various doctors."
They finally got in touch
with someone who was at a children's cancer center here in Florida who told them, 'Get that child to the closest cancer center. I think she has something called neuroblastoma.'
"We went to St. Petersburg to a doctor there. Within 24 hours she had a positive diagnosis of having cancer."
This particular cancer is a malignant tumor of immature nerve cells that usually starts in the autonomic nervous system or adrenal gland and spreads quickly, most often affecting young children.
Klair recalls, "We were faced with, 'Okay, we have a diagnosis. What do we do now?''
Radiation came first. They hoped to shrink the tumor enough to go in and remove it. It didn’t work. The tumor did shrink, but when doctors
went in and peformed
surgery, the tumor was entwined in Erin's inner thigh and pelvic area. "For a two year old, it really wasn’t possible to remove the tumor in full." They began a regiment of chemotherapy, which lasted just over a year and a half. "We had very
good results from that but we knew with the type of cancer she had, that it could reoccur. "
Being neuroblastma, it could also spread to other areas. She remembers sitting down and talking with the doctor asking, "Where do we go from here?"
"My world had become entwined with other people who had kids with cancer."
The Gourmet Girl's interview with Klair
Gourmet Girl: From what you’ve shared, the pressure on the family unit is enormous.
Klair: "Well I think any time you can have a diagnosis, at least you know what you’re dealing with. You know what the treatment options will be. She remembers, "With Erin, it was different. After 9 months of trying to figure out what she had we knew something was going on. As her mom, I already knew something was wrong.
Erin was just a bubbly child, she had lots of energy. She was a lovable, likeable child. You know, going to the hospital for her, because she was so young, was a way of life. She thought everybody went away to the hospital every two weeks and got poked and needled and everything else."
We made lots of friends. Our friends were surrounded by other cancer families, and they were surrounded by nurses and doctors who were our support network. When we came back to our home town, there was no support. There were lots of things in our community that helped adult cancer patients. But there was nothing for moms, nothing for children, nothing for dads.
GG: Do you think that back then the ‘C’ word was taboo?
Klair: I think one of the things that happened many years ago was the fact that most of the kids died before they were ever diagnosed. You are right, it was a taboo. Doctors were not real positive on people getting together to talk, because their first fear was for themselves. They were afraid that we were talking about them. We had to say, "No, no, we are talking about our lives, our children, what goes on with the whole family. Talking to other moms and dads in the same situation.
One of the hardest things to deal with is the separation of having another child that is still in school. My son was 8 years old. He was going to school and neighbors were helping to take care of him. In fact, the day my daughter was diagnosed was his birthday. I had to be away for that special day for him. He understood, but you know, he was only 8 years old.
GG: How was Jamie through all this? What did you do to try and make life normal for him after the loss of his sister? You’re grieving, he’s grieving.
Klair: Jamie’s sister was 5 years younger than him and he was always the big brother. He took Erin literally under his wing. I think for him it was a great loss because all of sudden he became an only child. When you have one child surviving, you tend to overindulge them. But at the same time, I had to discipline him. When he would get sick, it was ‘Oh my gosh is this going to happen again.'
You have to realize that he is a healthy child, that he’s going to go to the doctor, he’s going to take medicine and he’s going to get better. Still, you tend to watch when he was climbing the trees, doing somewhat, dangerous things. You automatically think, "I don’t want to lose another child."
GG: What would be normal behavior for a child is now on your radar screen and becomes almost threatening.
Klair: Right. Certainly the idea of losing a second child. Especially right after my daughter had passed away.
GG: You had another child, and led a somewhat normal life. How did you find a way to balance that?
Klair: I had been steadily in the hospital with her around the clock.Very intense therapy, with the bone marrow transplant. I can remember when she finally passed away, coming back home and having a sudden meltdown. All that strength that I had endured for years, going through a divorce, being a single parent, going on to the transplant. I was a young girl having to face all of this. It all just caught up to me.
I was an at home mom for many, many years. You come home, you do try to go back to being normal, but you'll never be the same. Cancer destroys all normalcy in your life. You have to try to get right back into your routine and do your best for the family’s sake. To survive.
GG: How old were you?
Klair: I was 29 years old. I was young when this happened. I can remember going to my sister’s house, finally just having that meltdown. I can remember laying in the bed and realizing all that had occurred. What do I do now? My one thought that continued to keep me going was Jamie. I said to myself, " Get your act together and get back on track."
GG: Because he needs you.
Klair: Yes, he needed me. Today we are very close. I have a granddaughter, she is 5 years old. She reminds me a lot of Erin, happy memories, and yet she is her own little person.
Klair: "Well I think any time you can have a diagnosis, at least you know what you’re dealing with. You know what the treatment options will be. She remembers, "With Erin, it was different. After 9 months of trying to figure out what she had we knew something was going on. As her mom, I already knew something was wrong.
Erin was just a bubbly child, she had lots of energy. She was a lovable, likeable child. You know, going to the hospital for her, because she was so young, was a way of life. She thought everybody went away to the hospital every two weeks and got poked and needled and everything else."
We made lots of friends. Our friends were surrounded by other cancer families, and they were surrounded by nurses and doctors who were our support network. When we came back to our home town, there was no support. There were lots of things in our community that helped adult cancer patients. But there was nothing for moms, nothing for children, nothing for dads.
GG: Do you think that back then the ‘C’ word was taboo?
Klair: I think one of the things that happened many years ago was the fact that most of the kids died before they were ever diagnosed. You are right, it was a taboo. Doctors were not real positive on people getting together to talk, because their first fear was for themselves. They were afraid that we were talking about them. We had to say, "No, no, we are talking about our lives, our children, what goes on with the whole family. Talking to other moms and dads in the same situation.
One of the hardest things to deal with is the separation of having another child that is still in school. My son was 8 years old. He was going to school and neighbors were helping to take care of him. In fact, the day my daughter was diagnosed was his birthday. I had to be away for that special day for him. He understood, but you know, he was only 8 years old.
GG: How was Jamie through all this? What did you do to try and make life normal for him after the loss of his sister? You’re grieving, he’s grieving.
Klair: Jamie’s sister was 5 years younger than him and he was always the big brother. He took Erin literally under his wing. I think for him it was a great loss because all of sudden he became an only child. When you have one child surviving, you tend to overindulge them. But at the same time, I had to discipline him. When he would get sick, it was ‘Oh my gosh is this going to happen again.'
You have to realize that he is a healthy child, that he’s going to go to the doctor, he’s going to take medicine and he’s going to get better. Still, you tend to watch when he was climbing the trees, doing somewhat, dangerous things. You automatically think, "I don’t want to lose another child."
GG: What would be normal behavior for a child is now on your radar screen and becomes almost threatening.
Klair: Right. Certainly the idea of losing a second child. Especially right after my daughter had passed away.
GG: You had another child, and led a somewhat normal life. How did you find a way to balance that?
Klair: I had been steadily in the hospital with her around the clock.Very intense therapy, with the bone marrow transplant. I can remember when she finally passed away, coming back home and having a sudden meltdown. All that strength that I had endured for years, going through a divorce, being a single parent, going on to the transplant. I was a young girl having to face all of this. It all just caught up to me.
I was an at home mom for many, many years. You come home, you do try to go back to being normal, but you'll never be the same. Cancer destroys all normalcy in your life. You have to try to get right back into your routine and do your best for the family’s sake. To survive.
GG: How old were you?
Klair: I was 29 years old. I was young when this happened. I can remember going to my sister’s house, finally just having that meltdown. I can remember laying in the bed and realizing all that had occurred. What do I do now? My one thought that continued to keep me going was Jamie. I said to myself, " Get your act together and get back on track."
GG: Because he needs you.
Klair: Yes, he needed me. Today we are very close. I have a granddaughter, she is 5 years old. She reminds me a lot of Erin, happy memories, and yet she is her own little person.
Klair: That’s correct. Raising children in two separate ‘environments'. We had families that would literally meet on the highway as they were taking turns going back and forth to the hospital. They would switch off with the siblings. One would go off to the hospital for a few days. First the mom, then the dad, then they would have to come back and go to work.
GG: Candlelighters is a very interesting name, why that?
Klair: If you think about a candle, there’s a glow, the circle that surrounds the flame. Within the circle, the light is always connected. The flame represents the center of life. One candle then to curse the darkness. If we’re surrounded in a circle by all of the families supporting one another, the link won’t be broken.
GG: When I was speaking with some of the parents what came across is the enormous amount of respect and admiration they have for you. Where do you think that comes from?
Klair: I think most people realize that I am honest. I treat everybody the same, regardless of your race or economic background. We’ve had all kinds of people involved migrant workers, doctors and lawyers. Cancer affects us all the same way. I think they look at me and say, "We can trust you. We know you are going to do your best and help us the best you can."
GG: You’ve also walked in their shoes.
Klair: Yes, I’ve walked in their shoes. You mentioned earlier that not everybody knows my story. Some people know that I had a child who passed away, but I don’t always initiate that part of it. I want to offer them hope. My daughter’s story began 25 years ago, so much wasn’t available medically. Today, there is a lot of hope. Every treatment is going to affect a child differently. They don’t give children the same types of chemo or radiation, and some of those kids are going to survive. You just don’t know and you have to hold out the candle of hope for each child.
GG: Hope is one of the most valuable commodities that you can have. You have your own story, but you are careful when you meet somebody and talk with them.
Klair: Everybody needs hope just to make it to the next day. Every day you survive is one more day. Teenagers are hard to work with they know what’s happening. We have a teen group that addresses that. We go out with just the teenage cancer patients. They can get together again in an informal setting and see that kids survive. Get ideas of how to cope with the comments. You offer hope, because without it you can’t get through the day.
GG: There is a tendency for some people to either gush with emotion or totally back away. I don’t know which one is more hurtful.
Klair: We’ve had a little bit of both. Years ago, after my daughter died, going back that first week to school with my son, people didn’t know what to say, so they said nothing. They backed away like we had the plague. It took quite awhile before people started coming back. Sometimes they didn't for years, and some never came back at all.
GG: What’s something you can say to the parent ‘next door’ that knows about the situation but doesn’t necessarily know what to say?
Klair: Say something. ‘I’m sorry for your loss, ask if there is anything you might do.' Don’t just walk away and say nothing. There are no right or wrong words. People think they have to creep around, never utter the child's name. As parents we still need to be able to talk freely about our children.
GG: You have created a memorial for Erin. It’s just that her name isn’t there.
Klair: When we started developing Candlelighters and what we were going to name the charity, we never put her name to it. It’s simply because in 25 more years, no one may remember who I am, they may not remember Erin, but they’ll remember that Candlelighters is an organization that helps families. That’s what I want them to remember.
Instead of the focus being on death, Candlelighters, for me, is helping families focus on living. If I can make one day different or better for all the other children, all the other families that struggle with this awful disease, then that’s what I want to do. Years after I’m gone, I hope there will be somebody else to follow in my footsteps, to keep the flame burning, to make a difference for everyone else.
I see their anticipation for an upcoming trip (we are taking the kids to Sea World). They know something good is around the corner for them. It’s not once a year that we do something. We’re touching their lives everyday. That’s how I believe we are really making a difference.
GG: Candlelighters is a very interesting name, why that?
Klair: If you think about a candle, there’s a glow, the circle that surrounds the flame. Within the circle, the light is always connected. The flame represents the center of life. One candle then to curse the darkness. If we’re surrounded in a circle by all of the families supporting one another, the link won’t be broken.
GG: When I was speaking with some of the parents what came across is the enormous amount of respect and admiration they have for you. Where do you think that comes from?
Klair: I think most people realize that I am honest. I treat everybody the same, regardless of your race or economic background. We’ve had all kinds of people involved migrant workers, doctors and lawyers. Cancer affects us all the same way. I think they look at me and say, "We can trust you. We know you are going to do your best and help us the best you can."
GG: You’ve also walked in their shoes.
Klair: Yes, I’ve walked in their shoes. You mentioned earlier that not everybody knows my story. Some people know that I had a child who passed away, but I don’t always initiate that part of it. I want to offer them hope. My daughter’s story began 25 years ago, so much wasn’t available medically. Today, there is a lot of hope. Every treatment is going to affect a child differently. They don’t give children the same types of chemo or radiation, and some of those kids are going to survive. You just don’t know and you have to hold out the candle of hope for each child.
GG: Hope is one of the most valuable commodities that you can have. You have your own story, but you are careful when you meet somebody and talk with them.
Klair: Everybody needs hope just to make it to the next day. Every day you survive is one more day. Teenagers are hard to work with they know what’s happening. We have a teen group that addresses that. We go out with just the teenage cancer patients. They can get together again in an informal setting and see that kids survive. Get ideas of how to cope with the comments. You offer hope, because without it you can’t get through the day.
GG: There is a tendency for some people to either gush with emotion or totally back away. I don’t know which one is more hurtful.
Klair: We’ve had a little bit of both. Years ago, after my daughter died, going back that first week to school with my son, people didn’t know what to say, so they said nothing. They backed away like we had the plague. It took quite awhile before people started coming back. Sometimes they didn't for years, and some never came back at all.
GG: What’s something you can say to the parent ‘next door’ that knows about the situation but doesn’t necessarily know what to say?
Klair: Say something. ‘I’m sorry for your loss, ask if there is anything you might do.' Don’t just walk away and say nothing. There are no right or wrong words. People think they have to creep around, never utter the child's name. As parents we still need to be able to talk freely about our children.
GG: You have created a memorial for Erin. It’s just that her name isn’t there.
Klair: When we started developing Candlelighters and what we were going to name the charity, we never put her name to it. It’s simply because in 25 more years, no one may remember who I am, they may not remember Erin, but they’ll remember that Candlelighters is an organization that helps families. That’s what I want them to remember.
Instead of the focus being on death, Candlelighters, for me, is helping families focus on living. If I can make one day different or better for all the other children, all the other families that struggle with this awful disease, then that’s what I want to do. Years after I’m gone, I hope there will be somebody else to follow in my footsteps, to keep the flame burning, to make a difference for everyone else.
I see their anticipation for an upcoming trip (we are taking the kids to Sea World). They know something good is around the corner for them. It’s not once a year that we do something. We’re touching their lives everyday. That’s how I believe we are really making a difference.
It’s nice to have someone else that I can see grow up. Perhaps see some of the things I’d hoped my daughter would do. (Laughs) The ballet lessons, all the things you hope for with a little girl.
The Beginning of Candlelighters
GG: Candlelighters is a national organization. Did you find out about it and develop a chapter here?
Klair: Actually it was the reverse. It initially started with my need to just reach out and talk to people when I got home you need that type of support network. We had a support group for families with kids with cancer. You find out, "Oh, you’re from Ft Myers or Cape Coral." We connected with somebody from home, exchanged telephone numbers and started getting together informally, as moms.
We put an ad in the newspaper saying we were starting a pediatric oncology parent support group. We got one or two families. Families that had lost a child would come and say, "I don’t know if I fit in, but here’s my story. What can I do to help somebody else?" We had the families who were very glad to have other parents to talk to. They started coming from Port Charlotte and Naples.
Then we found out about the national organization which was the Candlelighters Childhood Cancer Foundation. They were a young organization and said, "Why don't you just join us?" Things were simple. We filled out a form, and said "We’re the Candlelighter’s." We took on their name, later incorporated and began to seek donations to help families with travel expenses.
We were very fortunate to have some people that said, ‘We believe in what you’re doing, we want to help you more.’ We received some other donations and with that we were able to do more for the families. It started with 3 families but now serve 350 families in a 5 county area.
We don’t do anything medical, we are just there for the positive side. We all mourn our children, but for me I found helping other families to be my real life saver. I never expected Candlelighter’s to grow where it is today. I also never thought I would still be doing this. It is something that happened to me and happened to my family.
Every time I thought, "I’ve done my time. I’ve helped some families over the years," I would have that one parent who would call and say "Thank God you are here to answer the telephone." We would end up having long conversations.
The unique thing about Candlelighters is that we work with all the hospitals. I have kids from this area that go to St. Jude and to Miami’s Childrens. We are the ONLY charity that works with all of the families. The donations help all our community’s children.
GG: You’ve been with Candlelighter’s 25 years now; What is the one thing that stands out for you?
Klair: The ability to pick up the phone and help a family right when they are diagnosed. Not all families want to talk, some need their private time just until they adjust. Being able to say, "We can help, we are here to support you." I think that is the most important thing, they know there is a network of family support.
We are able to network them with other organizations that are good resources to go to. With the world of the internet, there is so much information out there, you can’t possibly absorb it all. You have to be sure you are going to credible sites with credible information.
We link families to places through our website to get factual information. We are fortunate to now have local doctors. Some people stay in our community, some people seek other options with the bigger institutions. At least they have the choices that weren’t here 25 years ago.
GG: There is so much stress on the family.
Klair: When families get involved in Candlelighters and they are around other families, it also helps keep husbands and wives in touch with each other. Like we talked about, marriages breaking up. The statistics say that over 86% of marriages will end when a family has a child with a serious, life threatening illness.
GG: Why do you think that is?
Klair: I think we all cope with things differently. If there are problems already within a marriage, then add to that the diagnosis, cancer. It's the straw that breaks the camel's back. Certainly money.
The financial stress is tremendous. Your whole way of life is affected. When Erin was sick, in those days especially, even if you were local, one parent has to go to the hospital, the other parent has the responsibility of being at home if you have other children.
GG: It’s almost like you
become 2 single parents.
GG: Candlelighters is a national organization. Did you find out about it and develop a chapter here?
Klair: Actually it was the reverse. It initially started with my need to just reach out and talk to people when I got home you need that type of support network. We had a support group for families with kids with cancer. You find out, "Oh, you’re from Ft Myers or Cape Coral." We connected with somebody from home, exchanged telephone numbers and started getting together informally, as moms.
We put an ad in the newspaper saying we were starting a pediatric oncology parent support group. We got one or two families. Families that had lost a child would come and say, "I don’t know if I fit in, but here’s my story. What can I do to help somebody else?" We had the families who were very glad to have other parents to talk to. They started coming from Port Charlotte and Naples.
Then we found out about the national organization which was the Candlelighters Childhood Cancer Foundation. They were a young organization and said, "Why don't you just join us?" Things were simple. We filled out a form, and said "We’re the Candlelighter’s." We took on their name, later incorporated and began to seek donations to help families with travel expenses.
We were very fortunate to have some people that said, ‘We believe in what you’re doing, we want to help you more.’ We received some other donations and with that we were able to do more for the families. It started with 3 families but now serve 350 families in a 5 county area.
We don’t do anything medical, we are just there for the positive side. We all mourn our children, but for me I found helping other families to be my real life saver. I never expected Candlelighter’s to grow where it is today. I also never thought I would still be doing this. It is something that happened to me and happened to my family.
Every time I thought, "I’ve done my time. I’ve helped some families over the years," I would have that one parent who would call and say "Thank God you are here to answer the telephone." We would end up having long conversations.
The unique thing about Candlelighters is that we work with all the hospitals. I have kids from this area that go to St. Jude and to Miami’s Childrens. We are the ONLY charity that works with all of the families. The donations help all our community’s children.
GG: You’ve been with Candlelighter’s 25 years now; What is the one thing that stands out for you?
Klair: The ability to pick up the phone and help a family right when they are diagnosed. Not all families want to talk, some need their private time just until they adjust. Being able to say, "We can help, we are here to support you." I think that is the most important thing, they know there is a network of family support.
We are able to network them with other organizations that are good resources to go to. With the world of the internet, there is so much information out there, you can’t possibly absorb it all. You have to be sure you are going to credible sites with credible information.
We link families to places through our website to get factual information. We are fortunate to now have local doctors. Some people stay in our community, some people seek other options with the bigger institutions. At least they have the choices that weren’t here 25 years ago.
GG: There is so much stress on the family.
Klair: When families get involved in Candlelighters and they are around other families, it also helps keep husbands and wives in touch with each other. Like we talked about, marriages breaking up. The statistics say that over 86% of marriages will end when a family has a child with a serious, life threatening illness.
GG: Why do you think that is?
Klair: I think we all cope with things differently. If there are problems already within a marriage, then add to that the diagnosis, cancer. It's the straw that breaks the camel's back. Certainly money.
The financial stress is tremendous. Your whole way of life is affected. When Erin was sick, in those days especially, even if you were local, one parent has to go to the hospital, the other parent has the responsibility of being at home if you have other children.
GG: It’s almost like you
become 2 single parents.
Prologue
As I sit here and write this article, an informal tea is going on in my living room, hosted by my partner, Elaine, the Gourmet Girl, with Klair and a group of moms that are just a small fraction of the families who have been affected by this awful disease.
What has made the most impact on me this afternoon as sit here and listen to them, is that I am seeing first hand what this organization is and what it does.
While they each tell their stories, they laugh, they cry, they share. That is the very blessing that Klair and Candelelighters represents. The ability for these parents to connect. To know that they are not alone.
This is a wonderful story of hope and selflessness. A story of one mother's courage to rise above her own pain, loss and loneliness to make sure that in some small way she could help others cope with what she herself had gone through.
In speaking with Klair and those who work with her, we were made aware that there were parents she is helping who didn't know that she had lost her own daughter to cancer. When we asked her why that was, she said, " It's really because when you have a family that is newly diagnosed, they don't need to hear, "I understand, beacause my child died." It's not beneficial for a family that hopes the outcome is going to be a positive one to hear that, so I’m very careful of who I approach and what I say to people."
It is exactly this genuine thought for all others before herself that has inspired us to bring you her story. This is an extraordinary woman and an extraordinary organization that deserves more attention than they get.
We hope that in some way we will help shine a light, a candle if you will, that wakes up the people and the media of Southwest Florida to Candlelighters and the people in it, who tirelessly give their time and effort for the comfort of those who need it.
If we can leave you with one thing this organization is all about it is this:
"Life continues.............."