It’s been awhile since I’ve updated this blog but I felt
this story deserved an end.
Today we just finished clinic, watched Kennedy get her last back pokey - a bone marrow smear to make sure no cancer cells
remain. This one was awful since she screamed out when they twisted the needle to get the marrow, thankfully she remembers none of it. We will never forget it.
Today she also was accessed for the last time. We videotaped it because she is proud that
she no longer cries, let alone even flinches.
It’s amazing that she is so brave because a fishing-hook sized needle
would scare the hell out of me. I will
try to post the video if I can.
Tomorrow, her port will be removed under general
anesthesia. This scares me more than
today’s procedure since the port feeds straight to her heart and surgery in
general just makes me uneasy.
After tomorrow, we are in a new stage of cancer care. She is still tied to clinic monthly for
cancer testing, including blood work, doctor visits and random testing. For the first year, post her last treatment
we visit monthly; the second year we visit bi-monthly and the third year,
quarterly. She is not considered
officially “cured” until the five-year mark from diagnosis but we are
officially in a very strong state of remission – hell, I consider her cured
already.
My best friend’s daughters was recently diagnosed
with juvenile diabetes. The news was
devastating to me because I don’t know how you poke your child daily – it
almost felt worse than leukemia to me.
Shortly after the diagnosis, she texted that she didn’t understand until
that moment how hard it was to console a parent with a sick child. I never thought of it that way and I guess I
really didn’t realize that people don’t even have a glimpse of what the parents
go through until they themselves go through it.
When I saw them after the diagnosis, they seemed normal,
happy – they adjusted to their new life.
What I saw in the parents (that they likely didn’t realize) was fear. They were all smiles and they were doing what
needed to be done with big smiles on their faces but beneath the surface, they
were freaked out and I knew it AND there was NOTHING to say to make it better. Smiles dually noted; it is not a sign that
everything is okay but instead a coping mechanism strong parents hide behind.
When I told someone recently about the monthly follow up
visits for Kennedy’s care, they brushed it off like a routine physical. This person compared it to a physical your
child goes through for school – height, weight, etc. I was told that these clinic days were
undeserving of a “work from home” day that my company graciously gave me when Kenendy was diagnosed (which I am so grateful for). I guess I
need to understand that parents with healthy kids never will (and never should
have to) understand the trauma of a blood draw on a 7 year old (and for the parents waiting for
the results). They don’t understand that
clinic visits may span four-five hours, and that during that time you may hear
another family on the other side of the room hear words that makes you
physically ill – “your child has cancer”.
It is a day I wish on noone and NEVER would I compare it to a yearly
physical. Needless to say, I find it
hard to even look at this person anymore.
It's hard for me to understand, this person just doesn't understand.
On to the future…
We are celebrating Kennedy’s big cancer win with a block
party on September 6 and then head off on our Make-A-Wish trip on September
14. We are staying at Give the Kids the
World Village and spending days at Discovery Cove to swim with the dolphins,
Disney World, Sea World and Universal Studios.
Needless to say, Kennedy is ecstatic and so are we.
Every time we hug her, we are so grateful for the moment. So many parents didn’t get this outcome and will never hold their child again. We are forever thankful to our fabulous group
of doctors (Manera, Sarvita, Hemmenway and now Suh), the great nurses in clinic
(especially Anette – K’s favorite), Megan Gertz for all her kindness and
support at Loyola, CureSearch for backing her protocol, MAM for giving me time
to take K to all her appointments, to Gene’s company that granted the same, to
my ROCK husband, to friends and family that stood by us, and most of all Kennedy – for her unwavering spirit, her determination to smile while going through hell and her ability to beat this awful disease.
It's been over a year
since my last post but I believe every story needs a happily-ever-after.
On February 2, 2017,
we will get the news we’ve been waiting for since her diagnosis – Kennedy will
be officially “cured”. With ALL Leukemia,
children who are free of the disease after 5 years from the date of diagnosis
are considered cured. 
I volunteer at
Loyola on the 4th floor – the pediatric ward where Kennedy was treated. I thought it would be hard to return. Surprisingly, it hasn’t been that bad with
the exception of February 2016. Knowing it was 4 years later and I was in the
same place was haunting but thankfully I was there for a different reason.
