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DEL.ICIO.USHoliday home away from home
The Atlanta Journal-Constitution
It’s tough being in a strange city, away from home, during the holidays.
My wife and I had that experience Thanksgiving Day 1995, the month our son was born. Miles’ medical emergency uprooted us from our roost in Orlando. He was airlifted by helicopter to All Children’s Hospital in St. Petersburg, Fla. There, at five days old, he underwent three surgeries: One sustained his life for surgery. One detected what was wrong and how to fix it. The third fixed the problem - a heart condition in which his microscopic arteries had to be snipped, then reattached.
Like many, we knew of the Ronald McDonald House only by name, and those donation boxes in the namesake’s restaurants. That was it. Yet a Ronald McDonald House became our home away from home for nearly a month during my son’s hospital stay. Memories of the volunteers, staff and parents at the St. Pete house resurfaced the other day when Larry S. Witt of Califon, New Jersey sent an e-mail.
He’d read an obituary I wrote Tuesday about Alexa Grace Rohrach, an 11-year-old Acworth girl. She died the day after Thanksgiving due to complications from a rare pediatric cancer called neuroblastoma. Witt’s son, 4-year-old Liam, has the same disease.
He wrote: “As I write to you, I am looking at the back of my son’s head … admiring the hair that has just recently started to grow back after a second round of chemo … Our newly-created organization is dedicated to him, those who have lost their battle to cancer, and those who will lose their battle in the days, months and years to come until better treatments are made available.”
Last year, cancer families from across the country helped with a three-week bake sale to raise money for the research of a disease in which only 30 percent of the children survive. Nearly 250 volunteers baked and sold nearly 100,000 cookies, netting about $400,000 for the Memorial Sloan-Kettering Cancer Center in New York City - the same center that treated Alexa.
After the event, calls continued to pour in from individuals who either wanted to buy cookies or volunteer. This one bake sale led to the formation of a nonprofit - Cookies for Kids’ Cancer (www.cookiesforkidscancer.org.). Its purpose: To raise money for all pediatric cancer research. The nonprofit offers tips on how churches, businesses and other groups can host bake sales. Online, you can also purchase all-natural cookies prepared specifically for the cause. (The nonprofit has partnered with a family bakery in California that makes the cookies.)
“What we realized after the ovens cooled was that we were on to something,” said Gretchen Holt, Witt’s wife and nonprofit co-founder. “So we put together a tool so people can have bake sales across the country for pediatric cancer research. While neuroblastoma is near and dear to our hearts, all pediatric cancer funding gets the short end of the stick.”
With the holidays upon us, organizers of Cookies for Kids’ Cancer mused about parents across the country who are staying at Ronald McDonald Houses while their children seek treatment. Many will be there on Christmas as well as New Year’s Day. The nonprofit wants to make the holidays sweeter for these families in their homes away from homes.
So this weekend, New York-area parents are to bake about 13,000 cookies that during the next few days will be shipped to Ronald McDonald houses across the country. Metro Atlanta has two - the Gatewood Road house and the Peachtree-Dunwoody Road house.
“There’s nothing like being away from your home on the holidays,” Holt said.
How true.
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Comments
By reader
December 5, 2008 10:02 PM | Link to this
Sadly, in general, there is very little known about brain tumors. My niece was 9 years old when she was diagnosed with a rare malignant brain tumor. She spent one New Year’s Day in the hospital, recovering from the first of five brain surgeries, over a 5 year span. That first surgery took place three days after Christmas. It was late spring before she would ride the bike she got in December. In addition to the surgeries and a couple of other procedures, she underwent radiation and chemotherapy. At one point, they traveled to Boston for one treatment.
Fortunately, what became “regular” treatments, were done at the children’s hospital about 40 miles from home. Because she was so young, her mother was able to stay overnight with her in the hospital, however, there was no hospital facility available for my sister-in-law to shower, etc. She was ever so grateful to the Ronald McDonald House up the road for their hospitality. They offered a room, but she really did not need it, but she was able to shower there.
The people at RMH are wonderful to families who are dealing with awful circumstances. We, who live in the Atlanta metropolitan area, are fortunate to be in such close proximity to great children’s hospitals and don’t have the need for Ronald McDonald House. Unfortunately, there are many families have to put their lives on hold, and one parent must leave a spouse and children behind in order to be with a sick and scared child far away from home.
It is amazing to see how families who experience such tragedies rally and give back tenfold the generosity shown them in times of turmoil. It is truly the season of giving.
Great article.
By Sharyn
December 6, 2008 7:53 AM | Link to this
I am friends with the Witt-Holt family and the work they have done with in creating Cookies for Kids’ Cancer is nothing less than superhuman. I strongly encourage anyone who is looking for a worthy cause to donate - I sent everyone cookies for the holidays and I can vouch, they are not only worthwhile, they are delicious! Seriously - the lack of funding for all pediatric cancer is borderline criminal, and anything we can do is a moral imperative.
By sharyn
December 6, 2008 7:56 AM | Link to this
And sorry, meant to add - RMH is also incredible. There are families who would not be able to be with their kids while getting care. Thanks Rick for writing about this in a very touching, personal way.
By Three Man Rush
December 6, 2008 9:35 AM | Link to this
Cancer is a fact of everyone’s life. If you are human, then your body has already contracted cancer and beat it several times. Dozens of times. Hundreds of times. Cancer is part of the way nature allows us to repair and replace all of our cells so that we can live into our sunset years.
However, poisons have entered our food chain, and our air. All Stars gives off light that mutates DNA. Sources of mutation come from the earth itself, and from rocket scientists who run our industries. Even disposed of properly, it’s nearly impossible to keep poison from entering our bodies. The earth just washes everything everywhere. The whole point of weather is to spread out the climate so we can all breath. Any Gas itself has a mind of it’s own called Brownian Motion, where it seeks out every nook and cranny of the space it’s inside of, including our atmosphere. That’s weather. That’s how rain is possible everywhere and thus life.
So cancer is a good thing, unless it mutates into cancerzilla. We know so little about it. Beware of doctors bearing clinical trials.
My wife thought she was so lucky to be chosen for a recent clinical trial involving a new drug called, “Sutent”. At first, the cancer receded into nothing detectible, and as she neared the end of the trial, it appeared we had bought plenty of time. But suddenly, all of it reappeared and spread in a matter of weeks. The weakness of the Sutent drug used is “limited range”.
The original site of my wife’s cancer could also have been misdiagnosed Where a cancer is becomes part of the presciption. Was it breast cancer that spread to the brain? or brain cancer that spread to the breasts and spine? Or was it a coincidence of two unrelated cancers? That she took the clinical trial of Sutent disqualified her for a more general seek-and-destroy that may have prolonged her life.
I hate second guessing the good doctors who wish they had the same magic wand that Bush wished he had recently to cure everthing.
Now she measures time as a matter of weeks. I know we’re all doomed eventually anyway, and that life itself is some great exercise in denial, but being trapped inside a human body means you feel the pain of loss of those in your orbit no matter how you try to deny that anything can hurt you. There’s no stopping the wash of agony that hits those left behind.
One of the phrases I hate the most is, “Thou are dust and into dust thou shalt return.” Everytime a priest said that to me on Ash Wednesday, I always mentally replied, “Bite the dust, father”
Like I need to be reminded. Cancer probably has answers to many of lifes mysteries and we can only donate our money to research.
Donate till it hurts. You’ll feel better.
By Patrick's Dad
December 7, 2008 9:39 AM | Link to this
My son, Patrick, and I are headed to New York today for his 13th week of treatment. This follows his 9 rounds of chemotherapy, stem cell transplant, surgery, and radiation accomplished here at Children’s Healthcare of Atlanta. We are proud members of the Band of Parents. We will be staying at the Ronald McDonald House in New York the next week - our home away from home. Thank you for your article. Many Atlanta kids are facing this battle. We happen to be winning it - so far. But many kids are losing, and we could suddenly find ourselves losing, too. That’s why organizations such as Atlanta’s CURE Childhood Cancer, the Band of Parents, the Ronald McDonald House Charities, and Cookies for Kids Cancer are so very important. God bless.
By NOWICUNVME
December 7, 2008 5:42 PM | Link to this
Well add my name to the list on this one. Although I have heard of RMH, I never knew exactly what they were or what they represented. These charities and non profit organizations are phenomenal with all that they do. For those of us that never had to deal with having a sick or terminally ill child are truly truly blessed and should give thanks daily for their healthy children. Trust me, just like this one, the trials and the stories are heart wrenching.
Good article Rick. Let’s see if the next topics can be a little more upbeat with the holidays coming and all. If anyone thinks they have or ever had any real problems, talk to someone or visit a pediatric ward of a sick child. You will then realize how trivial your problem really is.
OBAMA08
By Tom
December 7, 2008 10:42 PM | Link to this
Thank you for bringing childhood cancer and neuroblastoma to public attention. Most people believe that we are winning the war on childhood cancer. Sadly, we are not. While great successes have been made with leukemias and lymphomas little progress has been made with solid tumors such as neuroblastoma. Americans need to realize what is happening. We have spent somewhere on the order of $1.2 trillion in Iraq for nebulous reasons and $700 billion in an unsuccessful attempt to buy confidence in the economy and bail out banks with poor judgement. Yet when the lives of innocent american citizens are at stake we have spent less than $5 billion on cancer research through the National Cancer Institute and only about 3% of that goes to pediatric cancer. After several years of debate congress finally passed a bill providing a few million dollars for pediatric cancer research. It is something but it is a shamefully small amount of money.
Children our our nations most prescious resource. Decisions about our federal budget do not reflect this. Over the past three years we spent much of our time living in Ronald McDonald Houses across the country. We would give anything now to be there again, to need to be there again. In April our son Austin died at the age of seven fighting neuroblastoma while our government frittered away gobs of money around the world. He was a spectacular kid. If what he did in his seven short years here on earth were any indication he and other kids with neuroblastoma could have done with a long life, the world has truly suffered a loss.
www.caringbridge.com/visit/austinmelgar