Wednesday, October 17, 2012

Whew.......What a range of emotions today.  It really has nothing to do with Briley or us, but with other families that we have met while at Cooks.  I don't know how to explain this, but when you have a kid with cancer, it's like joining an exclusive "club" that no-one ever wants to be a part of, but you instantly become connected with others that have traveled the journey.  With that being said, 
My heart is over joyed that tomorrow will be Lianna's very last day of chemo!  We met Lianna and her family when Briley was first diagnosed.  Lianna is a few months ahead of Briley in treatment and was actually bald and in the hospital due to sickness at the time we met.  Plus it seemed like we were always in clinic together or Briley & Lianna were scheduled for LP's on the same days.  We've been keeping up with her on Facebook.  I can't tell you how happy we are that her treatments will end tomorrow!
Now, on the other hand, is Tatum.  We actually met Tatum and her family when she was in for her very last LP.  Come to find out later, Tatum had relapsed.  I can't imagine Briley relapsing, but being so close to being totally done with treatments, I just can't imagine.  I was on Tatum's caring bridge page a while ago.  She just had her first rounds of radiation.  Tatum's mom is a great writer and does a great job with the blog.  I hurt for Tatum and her family.  Tatum is doing good with treatments, but I just can't imagine having to put Briley through everything all over again with radiation and 29 days of steroids.  Her family has to stand behind a thick lead door watching their daughter getting radiation.  The poor little girl is having to fight a tough battle.  Tatum is about as tough as they come and I pray for her & her family that they can conquer the leukemia.  
And then there's Mr. Jude.  Jude and his family live in Wichita and he was recently diagnosed with leukemia.  Their journey has just begun and he is going through the Induction phase, which is by far the hardest phase to go through.  Everything is new, he's on 29 straight days of steroids plus all of the chemo.  Thankfully, tomorrow is the last day of induction and things will get easier!  Alicia and I are always available to answer any questions, not that we know it all, but we've been down that path and hopefully we can ease some anxieties.  He's a tough little boy and I have confidence and I pray that his journey will go smoothly. If you get a chance, please say a prayer for these kids.

The wide range of emotions got me fired up a little today.  So here we go:
Since it's October, we hear so much about pink this & pink that.  Don't get me wrong, I'm all for breast cancer research, awareness, and so fort.  But we try so hard to raise awareness to childhood cancer and most will turn a deaf ear to it.  Trust me, I remember the days before Briley's diagnoses.  I didn't know a thing about childhood cancer.  I didn't know any kids with cancer, but I sure knew plenty of folks with breast cancer, including my mom, two aunts, and a young wife of my co-worker.  All cancer's suck and they are all terrible.   But when you've walked in our shoes, been through what Briley, Lianna, Tatum, Jude, & Gracie has, and have seen other kids die from cancer, it changes you.  It changes everyone that's traveled down this path.  These kids don't have a voice.  They don't have a say.   It's up to us to speak for them.  If childhood cancer had half of the awareness as breast cancer, then we would be getting somewhere.  But it's considered a "rare" disease.  I don't think it's rare at all.  Not when 36 kids will be diagnosed with cancer every day.  Not when cancer is the #1 disease killer of kids.  That's more than AIDS, asthma, something else and something else, combined (sorry, I can't remember the other diseases)!  And unless you've been in our shoes or have listening to any of the 'preaching' I've done throughout the past year & half, then you wouldn't realize just how underfunded childhood cancer research is.  Pharmaceutical companies could care less because there is not a market for new and improved drugs.  Sad but true.
October can have pink.  That's fine.  I'm just about tired of having pink shoved into my face.  From being asked to wear pink to school, or pink out Facebook, or buy pink FD shirts, or watching NFL with pink jersey's.  I can't turn on the news with hearing about pink.  Let me say again.  I'm not at all against raising money for breast cancer.  We've donated to breast cancer causes and still do.  One of my inspirations is my co-workers wife that had a bad go of breast cancer and she was able to conquer it!  I can't say that I'm not jealous of all of the attention that breast cancer gets, because I am.  But, I am for a reason.  I am because I've watched my 5 year old daughter fight this disease for nearly 2 years.  We've watch other kids suffer and die.  Kids deserve to be kids.  Not stuck in a hospital in isolation or confined to the house, not able to go outside and play.  A parent should never have to attend their kid's funeral for any reason, much less because of cancer.  A parent shouldn't have to stand behind a lead door watching through thick glass as their kid lays on a table getting radiation shot into their little bodies.  Lots of folks have done amazing things for us and Briley, but only a few has joined the cause.  I really hope that some day we'll see more gold ribbons out there.  September is childhood cancer awareness month (Yup, I'm a month late).  So let's all wear gold in September and pink in October!  

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Thank you for your thoughts & prayers for Briley! God Bless!