Joseph’s Story

Many of you have probably heard of St. Baldrick’s and think of it as an event where people get their heads shave to raise money to help in the fight against childhood cancer.  However, there is really so much more to this event and some great success stories of kids with cancer, beating cancer and getting healthy, in part from the funds raised from St.Baldrick’s.  My son Joseph is one of those children and here is his story…

In 2011, Joseph was a seemingly healthy 5-year-old who was looking forward to starting Kindergarten that fall.  In mid-July, all that changed when we found out he had an inoperable brain tumor and hydrocephalus (fluid on the brain).   Dreams of kindergarten turned to wishes to see him healthy.  He was unresponsive for a few days and we longed just to see his baby blue eyes and smile again.

That was over 6 years ago, but we still remember going to our first Iowa City appointment and hearing what his chemo regimen would be.  In Chicago, where he was diagnosed, the neurooncologist sat with us and explained that the “best” treatment they have for Joseph’s type of brain tumor is 60% effective.

Wow – as if hearing the words “your child has cancer” wasn’t life changing enough now the best we could hope for was a little more than a 50/50 chance that the chemo would cure his cancer.

Joseph is doing well (5 years off treatment).  He is fairly healthy but we are still watching some issues due to chemo and he is starting to slowly overcome some latent effects of his chemo but we are still getting good reports that his tumor is stable.

Childhood cancer is different in the treatment of it.  Detection alone is an issue as unlike adult cancers, in 80% of kids with cancer it has already spread to other parts of the body by the time it is diagnosed.  Not only are the cancer’s specific to where they occur such as a brain tumor vs leukemia but it also is dependent on their age.  Certain cancers are treated differently based on the age of the child which just adds to the complexity of treating pediatric cancer.   Joseph’s chemo had a 60% chance of working, we were in the lucky 60%.  However even when cancers are 90% curable that still means that 10% of the parents hearing those words “your child has cancer” will lose their child and that’s not ok.

The funding is not there from other sources for childhood cancer research.  The fact is only 4% of federal funding goes to childhood cancer.  About 60% of all funding for drug development in adult cancers come from pharmaceutical companies – yet they fund almost none in childhood cancer because they are not profitable.

While there are treatments for many of the childhood cancers out there, not only are they not 100% effective, they leave lasting effects.  The nurse told us at our first appointment when we were learning all about Joseph’s chemo regimen that the chemo will destroy good, bad cells and it is a poison so it attacks many types of cells not just the cancer cells.  So not only were we just 2 weeks past finding out that our son had a brain tumor but now we were being told that we were going to be giving him poison to make him better.  No one takes their child to the doctor and gets poison to treat an infection – you give them something that is fairly low risk.  This is not ok.  The treatments take a toll on these children’s bodies.  Yes, many go on to live into adulthood but the fact is that through the years into adulthood we will be watching for potential issues caused by Joseph’s chemo which may show up this year or may show up in 5 years or 20 years.  We don’t live our life in fear but this is a reality.  This is a reality of all pediatric cancer survivors.

And even if your child is lucky enough to survive their cancer, statistics show that by the time “they’re 45 years old, more than 95% of survivors will have a chronic health problem and 80% will have severe or life-threatening conditions”.

Great things can come from research and hopefully one day when a parent hears those words “your child has cancer” it will be followed by the words “but we have a cure for that” or “we have a treatment for that and he/she is going to be ok”.  That’s what we dream of – that’s why we participate in St. Baldrick’s and promote it because they are helping to fund the research that will one day lead to a cure.

This year, in addition to the head shaving, there is a new part to the event called “Short Hair, Don’t Care”.  For those people wanting to become heroes for kids with cancer but not ready to brave the shave, we have created a “Short Hair, Don’t Care” part to the event where people can donate 8 or more inches of their hair to an organization that gives wigs to kids affected by cancer.

We are looking for shavees or people to donate inches of hair and barbers for this year’s event.

The annual St. Baldrick’s event will take place on March 24th, 2018 at the Community Center in DeWitt’s Lincoln Park.  There will be food, music, kids’ activities, a bake sale and silent auction.

Those interested in participating can REGISTER HERE!

Click here to stay up-to-date with St. Baldrick’s of Clinton County and like their Facebook page.

Donations can be made at the same website as above. If you want to donate by check or have questions please contact me directly at 563-249-7663 or by email.

Your support of St. Baldrick’s may seem so simple yet it truly means so much to families and kids affected by cancer.

Julie Burken – Mom of Joseph Burken-pediatric cancer survivor and Organizer/Shavee-Clinton County St. Baldricks 2018

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