Today marks almost a year since Kennedy was diagnosed with
ALL B-cell leukemia.It was
February 2, 2012, when we learned our 4-year old baby was in for the fight of
her life.Here we are, almost a
year later and we are 1/3 done with treatment.Some how we face the year anniversary of her diagnosis with
dread; I don’t know if we will ever erase the feeling of that day from our
hearts but we will certainly try to move past it.So now it’s time to party, to celebrate her life and this
past year of kicking cancer’s butt.I’m not quite sure what we’ll do yet but we will definitely thing of
something!
CureSearch 2013 Brochure
I mentioned in my last blog that Kennedy was being used in a
video montage for CureSearch.Well, we also found that they are using Kennedy for the nationwide
CureSearch Walk brochure cover.It’s part exciting and part sad.It’s exciting that out of a ton of patients and pictures, they chose
Kennedy to represent CureSearch in a big way.It is sad because it is for children’s cancer and I wish
from the bottom of my soul that she didn’t have cancer to be a model for.Guess what charity is my focus this
year????Anyone gearing up for
that September, CureSearch walk yet?
K and Zoe Snowball
Kennedy had chemo on Wednesday – the yucky kind called a
lumbar puncture (or intrathecal).They inject Methotrexate into her spine to prevent any rogue cancer
cells from entering her brain or spinal column.This treatment is the worst for us as parents to watch since
Kennedy is put under.This time it
was particularly painful because she was overdosed with Ketamine and it took
three attempts to puncture the correct part of her spine.The procedure started with the
anesthesiologist (that I never met before – Dr. Ebogi?) administering 20 mg of
Ketamine.Her normal dose is 20 mg
and he pushed it in rather quickly.Once Dr. Sarvita punctured her back, Kennedy mumbled “ow” lightly; this
is typical.Then K repeated “ow”
and then added “Hi Doctor” – not good.The anesthesiologist decided to administer more Ketamine, 10 more mg,
way more than she needed.After 2
more attempts, Dr. S punctured the correct part of her spine and we were
done.Another highlight of last
weeks visit is that her 6MP dose was upped.K didn’t gain weight but she did get taller – darn those
growth spurts.
The after effects of the chemo weren’t good.She normally handles it all pretty well
but she was terribly nauseated for the rest of the day, exhausted and
complained of back pain.All of
which could have been avoided.The
good part about the clinic visit that day is that we were in and out quick,
under 2.5 hours, which never happens.Also, Kennedy received a special bald American Girl Doll from Megan, K’s
child life specialist and my friend.Her new friend’s name is Zoe Snowball – aka Snowy.
Roller Skating
Skiing
Safari Land
Safari Land
Outside of an unpleasant clinic experience, all else has
been going well.Mom had the flu
so we spent a week a part where I couldn’t hug or kiss my princess - masks and
sanitizer were a big must in our house.I took 2-weeks off during holiday break and spent much needed time with
both kids.We went ice skating,
roller skating, had play dates, visited John Hancock Observatory, Safari Land
and anywhere else we could think of.When dad was home we did more ice skating and even went skiing. As a crazy working parent, this time
with them was more precious then I could have imagined. Going back to school
and work was sad for all of us!
That’s all for now…18.5 months until we are done with stupid cancer!
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!
Kennedy finished her steroid-round and had chemo on
Wednesday, the day before Thanksgiving.Maddox came with us to clinic and we were glad he did because it was a
long day; we got in at 9am and finally left close to 1pm. Maddox kept us entertained.
Kennedy gained 4 lbs in one week from
the steroids, nearly 10% of her body weight.The weight gain resulted in Dr. Manera wanting to up her
nightly 6MP (mercaptopurine) oral chemo for her new “surface area”.The goal is to have the kids on the
maximum tolerable dosage.Sounds
nice right?Tolerable?Tolerable is a good word since the
medication keeps Kennedy nauseated most of the time, I couldn’t imagine giving
her more.
I can’t believe I did what I did but I actually negotiated
with Dr. Manera. I told him I would make sure Kennedy got her weight down to
pre-steroid weight so the increase wouldn’t be necessary.We would need to trim the weight in 3
weeks;much harder than it seems.One week on her diet and she’s actually
gained almost another pound.Poor K, my stalling
tactics won’t survive the next visit and her 6MP will most definitely be
upped.Stupid cancer.
Maddox’s birthday fell on Thanksgiving this year.Since we didn’t know how Kennedy would
feel after chemo and from her roid withdrawl, we decided to celebrate at
home.We felt being home would be
the most comfortable place for her and also a place we could focus on Maddox
turning 8.Grandpa, Grandma and
Uncle Sergey, spent the day with us.
By Saturday, all was seemingly normal again and K lost her
roid rage and became a complete doll again.We had our family photo shoot on Saturday (THANKS LIDIA)and
Sunday K got to celebrate Maddox’s boy-birthday party with him at Laser tag.Being the token girl, she had the time
of her life. On Monday, I unfortunately got
the flu so am on lock-down.Praying that everyone stays healthy!!!!
We are prepping for clinic tomorrow and are prepared for our
new-normal life to be yet once again turned upside down.Kennedy gets Vincristine through her
port at clinic tomorrow and also starts a 7-day run of steroids.It seems as if just as things
start to become normal, we are tossed back into a chemical nightmare.The side effects of this chemotherapy
include hunger, puffiness and intense muscle/joint pain.
Kid Yoga
Since I haven’t blogged in awhile, I figured I’d catch up
now.We had an unscheduled ER
visit last weekend.The cough that
I heard in Kennedy’s classroom by a classmate just 3-weeks back made its
presence at home 2 weeks ago.When visiting her class, I heard the thick congested cough and had a
full blown panic attack.I called
the teacher, nurse and principal and insisted that all of the kids in the class need to use sanitizer immediately - I'm sure I sounded crazy as I told them I wasn't sure I should continue sending Kennedy to school. Up to this point, only Kennedy used sanitizer.I ordered 4 enormous gallons of
alcohol-free sanitizer from Amazon and as far as I know, all the children are
using it and the school has me on crazy-parent watch.
Halloween Goodies
Unfortunately, my efforts were a little too late.Kennedy’s cough resulted in a
temperature bouncing between 100.5 and 100.9 and we were sent to the ER.We were there for 4 hours where she
needed two blood draws, one from her port and the other from her arm.
Since Loyola is also a teaching hospital, it seems we also
got to play test-doll for a trainee learning how to access a port.I should have known better when the
head nurse came in with two younger nurses.It was the way the assisting nurse was feeling around K’s
port that gave it away.I asked if
she had done this before and she assured me she most certainly had.Of course she missed and the head nurse
had to fix the error.The same
error happened earlier when drawing blood on Kennedy's arm as I saw a different nurse poking around
with the needle.I
forgot how protective and on guard we as parents need to be, we are our child’s
advocate. Gene and I were on edge after the two misses. Thankfully Kennedy’s
counts were high enough so she was given a preventative dose of antibiotics and
sent home.
Circus Fun
Outside of the hospital visit, the last month has been good. We had a Halloween party for the kids, we went to kid yoga and we were spoiled by Jon Troy at Feld yet again and given front row and stage seating at Ringling Bros circus. Kennedy is loving school and has been going to gymnastics at the Y. We are keeping busy and trying to have fun. Hoping for a quick and painless roid run.
Today’s clinic visit
was very stressful for Kennedy.As
visits become less frequent, she has started to develop anxiety about having
her port accessed.Mom and dad
have the same anxiety.When she
was first diagnosed everything seamed surreal and we became numb to the needles
and treatments.Now the treatments
are traumatic for all of us and we drove to clinic in silence.
The visit itself was overall good, K had a spinal infusion of methotrexate (aka intrathecal). This treatment infuses chemo into her spine to prevent any rogue cancer cells from traveling to her brain.
Dr. Sarvita was our doctor for treatment today and K adores
her.We spent extra time waiting
for counts since the tube (kind of like what they have the banks to bring money
from car to teller) was broken and no one knew it so her blood work didn’t make
it to the lab when it was supposed to– this added an additional hour to today’s
visit and procedure.
Kennedy’s counts came back extremely high (over 3500) which
is very odd.They think it is
likely due to her possibly having some type of virus and her body fighting it
off.The doctors weren’t too
worried and the high counts allowed us to proceed with the chemo.K was put under with Ketamine and the
procedure took a total of 5 minutes (but a half hour from beginning to end).Coming off the Ketamine, Kennedy was
loving and silly as always and she continued to tell us how we had 4 eyes and 2
noses as she was coming off the drug.
Dr. Manera came downstairs from the hospital to spend some time with us. Apparently we are still the only low risk diagnosis made this year based on the new protocol. We are also the only one in clinic on K’s protocol. Dr. M was very happy to see us and us him. Megan from Child Life also hung out with us while we waited. We got to clinic around 9am and left at 12:30pm.
K and daddy with her cute little pigtails
After chemo we took her to eat and to Build-A-Bear.The procedure wore her out so we went
home to rest and later headed to the reading night at school.This evening she has been complaining
of nausea and back pain (from the pokey) but is overall in good spirits.
I must vent a bit I have to say it is so frustrating going through what
we did during the day and then walk into a public area (like school tonight)
and see normalcy.Nobody knows
what our day was like but we do.I’m intrigued that people can find importance in protecting peanut-free
cookies and am amazed that we could get shamed for grabbing one when not allergic
to nuts at tonight's book night.When this
stuff happens, I want to scream.I mean seriously, do people even have a clue of what they stand for
sometimes?If there was a shortage
of peanut-free cookies, I would have gladly gone to the stores and bought the whole
shelf.And it’s great they have
cookies for kids allergic to peanuts or gluten but what about a special section
for a cancer patient that can’t sit packed-in like a sardine with all the kids
on the floor of the gym?I mean,
if a kid doesn’t get to eat a cookie, they will survive.If my kid sits among the stuffy noses
and coughing, she could be hospitalized.
I understand the world doesn’t stop for Kennedy and I am
fine that there wasn’t a special section available for her at school
tonight.But with that said, why
should we protect cookies? I'm sure the peanut allergy kids would be okay without special food even if they ran out - just like I was okay there wasn't a special area for a cancer kid. Okay,
enough ranting; I’ve had a
long day and I’m probably not even making sense at this point.
Great America visit October 2012
A quick overview of the last 3-weeks:K loves school and has been doing
great.Kennedy is a daredevil and
dragged us on both the Demon and Eagle at Great America last week and has been
living it up like any normal kid.She still has emotional outbursts and I’m not sure if they are
chemically induced or just part of being 5.She continues to take daily chemo of 6MP (Mercaptopurine)
and weekly doses of Methotrexate.
Next in-clinic chemo round is steroids and Vincristine that
falls around Thanksgiving.In the
meantime, any in-clinic visits will be blood-draws. As the weather gets colder and flu season approaches, we are
staying positive and praying that K stays healthy and happy and we only visit
clinic for pre-scheduled treatment/blood draws.
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.
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.
