The Children Who Inspire Us

Hello! My husband Kevin and I are excited to share our experiences in connection with , Kevin’s children’s book. As you may have read, our book sponsors three separate charities: The B+ Foundation, The Philadelphia Veterans Multi-Service and Education Center and The Children’s Miracle Network.

I thought it would be good to start by telling you more about what drives us, what inspires us. Today, I am focusing on the children. Kevin will have more to say in the future about our wonderful Veterans.

The B+ Foundation raises money and awareness for Pediatric Cancers. September is Pediatric Cancer Awareness month. Did you know that? And did you know that only 3-percent of the National Cancer Institute's annual budget funds childhood cancer research? I didn’t know that.

The B+ Foundation also assists families of children diagnosed with cancer. They provide funds to help parents pay for medicine that the insurance companies deny. They have provided money to families who have lost their homes during their children’s illness so they can get rooms in hotels near a hospital. They do whatever they can to help.

The Children’s Miracle Network of Philadelphia provides funds for several programs at CHOP. Their director told us that more and more families are losing their medical coverage as many are laid off from their jobs. CHOP is determined that no child will ever be turned away for lack of insurance. This decision has greatly increased the financial demands on The Children’s Miracle Network.

I can list facts and figures, but let me explain it from a personal level. I learned of one special little boy through The B+ Foundation’s Facebook page. They were asking to keep his family in our thoughts and prayers as they were awaiting results of scans he was having in NYC. I clicked on Ethan Jostad’s Caringbridge website :http://www.caringbridge.org/visit/ethanjostad and began to follow a little boy with a huge heart and a bright smile.

Ethan was diagnosed with Stage IV Alveolar Rhabdomyosarcoma (ARMS) in 2009, when he was just seven years old. He underwent treatments in his home state of Oregon. When the round of chemotherapy was complete, his family researched and fought for him to have an unconventional regimen of maintenance chemotherapy. They were determined to give him the best chance to beat the beast.

In April 2011, his scans came back clear. However follow-up testing in June in NYC showed the cancer had come back and spread all through his body. Still reeling from the news, his family made NYC their home for the summer while Ethan received additional treatments.

All summer I checked my computer several times a day looking for word on Ethan. There were happy times, like when FAO Schwarz let him and his family in before they opened to have free reign with all the toys!

And there were sad times, like when he asked his parents if someone could die from what he had. As a parent, I can’t imagine what I would say, can you?

In August test results showed that the new treatments weren’t working, there was no more that could be done for their son.

Crushed, his family packed up and returned to Oregon to face the worst. Ethan was only home a short time before he became so ill he needed to be admitted to an area hospital. There, his family stood by his side day and night in agony, knowing that their time with their little hero, their precious, smiling little boy, was almost over.

On Aug. 8, 2011 his mother Kim posted a short, poignant message, “Ethan earned his angels wings at 2:38 p.m.”

I cried and cry even now every time I think about the emptiness of his parent’s arms.

Ethan touched more people during his young life than most adults can ever hope to. Through his strength and determination to fight, he brought tens of thousands of people together to work for a cause; so many that the celebration of his life was streamed into computers all over the world!

Everyone came together for Ethan. They supported his parents with words and financial gifts. And now, they are rallying behind the new Ethan Jostad Foundation to help other children going down the difficult road that he walked with such courage.

So, this is why Kevin and I work so hard to get the word out about the book. If I ever feel self-conscious about promoting or if I ever get discouraged by our progress; I think of Ethan, (and our own local Gabby Vogel and Trey Love). They are fighters. I can only imagine what their parents face. It must feel like being hit by a tsunami of problems. Their children are very sick, often they are living at the local hospital or traveling to another state entirely, their other children also need their love and support, the electric bill and mortgage bill still arrive every month in the mailbox and  insurers put them in  a position of having to argue the case of why their children are worthy of any treatments or hospital stays required to prolong or save their young lives. They are struggling to get to the surface. Someone has to help them! If it were you, wouldn’t you want someone to reach out?

If there is anything Kevin and I can do, we will do it to make the road a little easier for children like these and their families, going through things we wouldn’t wish on our worst enemy.

Recently I was telling a woman about Ethan and other children like him. She sighed and said "Yeah, there are thousands of stories like that out there.” I began to realize that people (good people, who do care) get overwhelmed by the sadness and the need and they don’t react at all. But, wouldn’t you rather do something for some of them, than nothing for all of them?