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.