Thursday, December 20, 2012

Hair-loss, Clinic and CureSearch

Holiday Fun
Health wise, the month has been good.  Kennedy had clinic last week and her counts were 900, we lost enough of the steroid weight to prevent an increase in her meds and everything is returning to normal.   Emotionally, it has been a tough month.  Her favorite nurse wasn’t at clinic and one of the newer nurses missed her port causing much distress.  Also, Kennedy’s hair started to fall out again. 

Missing Hair
Clinic is traumatic enough for K; a missed port access causes so many problems I can’t even explain.  It takes months to overcome a miss.  After the ER visit miss, Kennedy has been anxious and distraught about clinic visits.  The ride there is tense and once we get to clinic, she clings to me or Gene for dear life and screams in horror when the needle (the size of a fishing hook) comes at her.  Her favorite nurse Anette calmed her fears by hitting it dead-on the last few visits but all that was erased when Anette wasn’t in clinic last week.  I had to listen to Kennedy scream as they kept adjusting the needle to get in; very traumatic.   The whole process makes me ill.

Making Hair-loss fun
Two weeks ago we noticed her hair started falling out again.  I can’t explain the dread or pit in my stomach when I noticed this.  At first I noticed it getting thinner, I could have sworn it was coming in thicker.  Then, as we were putting her pigtails in, I noticed the parts seeming overly wide; then it hit me.  I ran my fingers through her hair and more than 30 strands easily came out.  I did it again, and again they fell out, strand by strand.  Gene and I looked at each other and we both felt it. It is hard enough to know your 5 year old is fighting cancer but for some unexplainable reason, seeing it (through the nausea or hair loss) is so much more devastating.  I took a time out and cried (privately).   Our nanny thought we shouldn’t tell Kennedy about it but we promised we wouldn’t keep anything from her; I mean what if it all falls out again?  We told her how pretty she is so it really doesn’t matter, it fell out once and came back, etc - thankfully she agreed.  I had her laughing and she seemed fine with it all.  She’s got such a great spirit.   Over the past few days, it seems as if the hair-loss has slowed.  Hopefully it just thinned and will grow back quickly.

Some good news:  CureSearch reached out this past month to include K in some of their campaign collateral for 2013.   They requested a few pictures and quotes and put together a short 30 second slideshow video of Kennedy’s journey to be used on the website (see inset).  They will also be including her in some of the campaign collateral.  Kennedy loves the attention.  I love the meaning behind the organization.  Every day, 36 children are diagnosed with cancer, 1 out of 5 children won’t make it.  That translates to 7 of the children diagnosed today will likely die.  CureSearch works on raising money to find a cure.  Unlike some of the other great pediatric cancer charities out there that provide gifts and great experiences for kids with cancer, this one actually aims to stop cancer if it hits.  This is so important considering only 4 percent of funds raised for cancer by the American Cancer Society goes towards curing pediatric cancer.  The study Kennedy is on is backed by CureSearch.

Kennedy at her holiday show
This last week has been tough on the world with the loss of so many lives, mostly children, in Connecticut.  I’ve been trying to not watch TV, read the newspaper or follow Facebook so closely.  It is so emotionally painful, I try to tune it out.  For the first time probably ever, most of the world envisioned what it would be like to lose a child; they put themselves in the shoes of the parents that will never see their little ones again.  For me, I can’t do that, I try so hard not to.  It’s has taken me months to not think about what it is like to lose a child.  When Kennedy was diagnosed, pushing those thoughts out of my head was a daily challenge and I can’t go back to that place again.  A day after the tragedy, a friend asked innocently “can you even imagine what it is like to lose a child?”, and sadly I answered, “I have thought about it too much”.

Hold your kids tight, kiss them often and let them know how much you love them.  Never take a single second for granted!