Keeping Busy

At Disney on Ice

An ambulance and fire truck were at our house today.  Thankfully, it was an error because Kennedy called 911 when her and Maddox fell while playing so she wanted to the call the doctor (no worries, no one was hurt).  I think Gene barely lost his mind when he drove up after work and saw that.  We are a bit stressed these days and never know what to expect.

K had clinic last Thursday and was shocked when she had to get a flu shot.  Yes, another pokey!  Her counts were good, too good; likely because we messed with her meds by giving her 6mp earlier in the day to try to evade the nausea.  We got our hand verbally slapped and we are back to giving the med before bed which means nausea is pretty constant; some days are good, some not.

With Emily and Kaitlyn

It’s almost October, almost 8 months since Kennedy was diagnosed.  These last 8 months have been tough.  We’ve made a lot of great new friends and we’ve also lost many friends that we have known seemingly a lifetime.  I’m sure with any major life occurrence this happens but some of it is hard to take when everything else in life seems so up in the air.  I can’t say I’m disappointed so many friends have disappeared from our lives as they probably weren’t that great of friends to begin with, but it does hurt sometimes to look around and realize that when we stopped trying (when K got sick), so did they – when we needed them most.

Gene and I smile when we tell Kennedy’s story now. We tell people everything is “fine”.  We say that we are “lucky” that Kennedy has this type of cancer.  Gene and I do what Gene and I do best, protect everyone but ourselves.  Perhaps if we announce this bs enough, we too believe it. 

At the Starlight Foundation event, picking a pumpkin

I have been too tired to blog about anything lately; we keep ourselves busy, almost too busy.  This is how we deal.  Kennedy has gotten to take part in Disney on Ice (thanks Jon Troy from Feld Entertainment), we went to a Starlight Foundation pumpkin event, we got to go on-field at a White Sox Game (thank you Amy at American Red Cross), and the list goes on.  I keep myself busy by obsessing with working-out and Gene buries himself with work.  It is just what we do to pretend life is normal.

So now that the shock of what has happened to K has worn off, I’m on to the “why”.  I learned that many of the Hurricane Katrina victims that were put up in trailers by FEMA attracted various types of cancer (which included Leukemia).  The cancers were attributed to the Formaldehyde the interior of  trailers are treated with.   When new trailers (and sometimes cars) are used in extreme heat, without airing it out, the toxicity is 400 times the legal limit when the formaldehyde turns to gas. The most common type of cancer associated with toxic trailers was AML Leukemia.  We recently ordered a formaldehyde test from toxictrailers.org and the buyers of our trailer agreed to test for it.  It’s not like it will change anything if it does test positive for formaldehyde since ALL Leukemia hasn’t been proven yet (and I’m no political guru for change), but I want to know if we caused this by bringing her there.  

For now, we just keep plugging along.  28 months left.

CureSearch Walk

Kennedy started kindergarten, a life occurrence we didn’t think would be possible 7 months ago.  We’ve come a long way.  Maintenance is not the cakewalk we thought it would be but it is one step closer to kicking cancer’s butt for good.  Kennedy now has morning sickness every day and her first few days of kindergarten were hell to get her out of the house.  Thankfully, a simple dose of Zofran nightly along with her oral chemo seems to do the trick for now.  If we had any concern that the nausea first reported 2 weeks ago was the flu or anything else, we are now pretty sure the oral chemo build-up is the culprit ,which is good and bad.  Good that it is not anything more serious, bad that we have 2 years of this left.

Other than her daily nausea, we’ve been living life hard.  We take our kids everywhere and live life to its fullest. 

Yesterday was the CureSearch walk and we are privileged to know so many wonderful and kind people.  The generosity seen from friends, family, acquaintances, colleagues and clients to help such a worthy cause has been humbling.  An old friend donated his dad’s birthday gifts to the cause.  His dad has also been battling cancer and just turned 70, they felt Curesearch was a good place for the gifts to go since no kid should have to go through what his dad has.  One of my best girlfriends got her whole workplace to kick-in to make her the single largest outside donor of our group.   There are so many stories of generosity it would take pages to list.  I am grateful to all the friends and family that came out to walk and give up their time early on a Saturday morning to support us in our battle. I am also grateful to those who couldn't make it to the walk but still contributed, every bit helps.

The walk was hard, not physically but mentally.  Walking from the parking garage to the event was overwhelmingly emotional.  Seeing the balloons released by all the families that lost a child or reading a poster about a little girl who died from AML at 11, was hard to digest.  I know I say it often but we are one of the lucky ones.  Kennedy’s cancer has definitely given the entire family a new perspective on life.  We know what matters, who are friends are and appreciate every chance we get to enjoy our life and everyone in it.

I am not numbering days on the blog anymore because it is honesty just to hard to keep up.  We are 7 months into treatment and have 23 months to go.  We are almost 25% done with stupid cancer.