The Cost of a Cure

Of the 46 children diagnosed with cancer every day (13,500 every year), 1 in 5 will die and 3 in 5 will develop long term complications.  

Crummy odds if you ask me. And it only gets worse with time.

"By the time (childhood cancer) survivors are 30 years out from their cancer diagnosis, however, almost 75 percent of them have a chronic health problem and 42 percent die or have severe life-threatening conditions." 

This is The Dark Side of Being Cured From Childhood Cancer. 

The treatments for kids' cancers are often referred to as "cut, burn, and poison".  These refer to surgery, radiation, and chemotherapy.  Sadly, for the vast majority of kids this is all medical science has to offer... 40+ year old solutions.  In the majority of pediatric cancer deaths it is the "cures" themselves that take children's lives.  The cancer is not the primary cause of death. And these are not optional treatments.  Parents who decide not to follow traditional medicine can be prosecuted.  Most of the chemo drugs used in children are scaled down doses of adult drugs.  They are not tested in or created for children, but they are all we have because of the lack of research funding.  It makes no sense.  If your infant gets a cold do you give them a small dose of nyquil? These days, you can't even give them pediatric cold formulas.  But when cancer comes on the scene the rule book goes out the window.

I think about this almost daily.  Our kids need better options.  Safer options.  Julia is one of those "3 in 5" left with long term complications from her treatments. She has had 7 surgeries since she was diagnosed with cancer.  Four of those have been since she was off treatment.  Her most difficult hospitalizations, complications, trauma, and emotional struggles have all been off treatment.  It shouldn't have to be this way.  Last week we had to treat Julia's granulation tissue again.  Her surgeon decided to let us start doing it ourselves at home so we could make it as easy as possible on her.  We were given the medication we needed to sedate her at home to help minimize the trauma for her.  It has been a process of trial and error trying to find a medicine that works.  We have not had a lot of success.  After I did some research into all her past hospital sedations and drug dosages (shout-out to our onc clinic for looking up all the data for me in her records!)We were optimistic this recent time would be better.

Now there is something just wrong about having to sedate your own child.  The crushing, mixing, calibrating, adjusting for new weights and heights, prepping Julia for what I'm about to do, and then monitoring her throughout the process and for the next 24 hours afterward just feels so nuts.  All part of being a momcologist, I guess. I can't say that fear is not there every time and the anger at cancer. I gave her the meds and put on her emla.

In about 45 minutes she was out.

She woke up when we started using the silver nitrate, but her ability to fight back was much less.  She did grab the stick at one point to "help" and apparently got my arm.

But in the grand scheme of things, 3 tiny burns is about 10,000 times less than what I've inflicted on her recently with all the medical procedures I've had to do. Just another reminder.

We NEED better treatments for our kids.  We need more research.  Want to help? Find a CureSearch event near you and walk for the kids.  Or join our team and help as Julia walks for better cures for herself and her friends.  In the pediatric cancer world, the kids fighting cancer and their families have to raise their own research funding, but if we don't nobody will.  If we don't make our voices heard, the ignorant silence will continue. And so we walk.