Our children deserve better...
This is Michael. Today is Monday and we launch into our second full week of Children’s cancer Awareness Month (that means ACTION). We have returned from Scotland and are home in Florida now. We took Cannon to Scotland to see his grandparents and aunt and uncles and all of Melissa’s family and to celebrate his 3rd birthday in Melissa’s homeland. Cannon was so good during this trip, smiling and laughing and being a fun loving 3 year-old boy. We were concerned before we left about “what ifs” and Cannon needed medical attention while in a foreign country; we made contact with the local children’s hospital in Glasgow and communicated with a pediatric oncologist there who specialized in neuroblastoma, and even had Cannon’s full medical record sent in advance in the event he spiked a fever while we were there and had to be admitted for antibiotics. This was a real fear, because Cannon’s stem cell transplant completely wiped out his immune system, so much so that soon he will begin receiving all of his immunization shots again and have to redo all of them as if he were a newborn baby. A fever of 100.5 to a child who has endured cancer treatment means admission to the hospital for a minimum of 48 hours to ensure infection does not set in. Just another small fact of the price children with cancer and their families have to pay even if they endure and withstand all the harsh treatments. Fortunately, Cannon had no troubles at all and Melissa and I looked at him and ourselves several times watching him and just smiled from our hearts to think that this child could be on his feet again, let alone in Scotland and having the life of a child at play. Thankful.
Childhood cancer Awareness Fact of the Day:
One in 3 children diagnosed with cancer will not live out a normal life span because of early death or the effect of the harshness and side effects or secondary cancers developed from the treatments available for pediatric cancers.
SOURCE: Parents Against Childrens’ cancer (PAC2)
Last year during this month, I wrote a post about what the world of pediatric cancer means to me now that we live in it, and a lot of people have emailed me and asked me to re-post the story. Here it is:
While I was sitting with Cannon at the hospital last night, I read a story about a gentleman named Jeremiah Steepek. Recently, Steepek was to become the new pastor of a church with 10,000 members. On the day he was to be introduced to his new congregation, he didn't bathe and made himself dirty and dressed as a homeless person. He showed up before the service and and walked around outside the church.
The members, all anxious and dressed to see their new pastor, all walked past him and some gave him bad looks and otherwise ignored him. He asked some for food and none offered. Three people out of 7,000 said hello to him. He tried to go into the church and sit at the front row, but the ushers quickly took him away and made him sit in the rear. Stares and disdainful looks came his way. When he finally was introduced to the congregation and made his way to the front of the church and all saw who it was dressed as the homeless man, almost all felt the shame.
Maybe I just have kids' cancer on the brain, but reading this story made me think about where research funding for children's cancer is compared to that of other funded cancer efforts. Research and testing and trials for children's cancer (all 12 major types) IS the homeless man at the entrance, trying to get into the building and getting nothing but looked down upon, ignored but occasionally given a weak smile or head nod. Children's cancer reseach receiving 3.8% of all government cancer research funding (with some adult cancers getting 3 and 4 times that alone) is like getting the seat at the back of the church but given the obligatory wave of the hand. It is the homeless man, being taken to the rear and most just hoping he will just go away or at least, not be seen.
That’s what I wrote last year, and funding for research for children's cancers has not changed. There are no offers or promises of anything more. In fact, when the current administration is asked about funding to the National Institute of Health (NIH) for cancer research, the response is that funding will likely not increase, which means that research grants for the cures and better treatments for children's cancers will continue to be given the seat at the back of the church.
Yesterday, I posted from Erin Santos that it's really not awareness, but Action that we want for children's cancer issues. What can you do? Donate blood, donate to our foundation or to St. Baldrick’s or to Alex’s Lemonade Stand, or write a letter to your congressional representatives and ask to vote for The Caroline Pryce Walker Conquer Childhood Cancer Reauthorization Act (H.R.2607/S.1251). This bill is bipartisan legislation in the House and Senate to expand the research of childhood cancers, improve efforts to identify and track childhood cancer incidences, and identify opportunities to expand the development of drugs necessary to treat the 13,500 children diagnosed with cancer in the U.S. each year. The original act was passed unanimously in the House and Senate and signed into law by President Bush in 2008, but was only partially (in fact, barely) ever funded by Congress.
Thank you to all who follow and pray for Cannon and all the kids with cancer that we know and who are right now, today, treating and suffering from the harsh treatments in the world of pediatric cancer. Thank you to all who have offered to educate the community or write their representative, make a donation to a children's cancer charity, tell a friend or family an awareness fact, make a presentation to a local group or make any effort for kids' cancer. Don't do it for us individually or just for Cannon... do it for kids with cancer and for our society. Our children deserve better.