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| 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.
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| 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.
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| 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.
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| 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!
