7 Months Cancer Free!

Kennedy's first dance competition - as a "Little Monster"

Such a whirlwind!  We’ve had so much fun living a crazy life; I completely passed the 6-month mark without any update.  So I’m a month late….worse things have happened ;)

Over the past 7 months, we celebrated Kennedy being cancer free with a good old-fashioned block party.  Then we went on an incredible Make-A-Wish trip to Disney World.  Kennedy started 2^nd grade, joined a competitive dance group and is now preparing for a talent show.

Things that used to stress me out like accessing her port; fevers, nausea and missing meds are a thing of the past.  Now I am stressed if I have the right shoes or pink hair spray packed for a dance competition.  Can you believe I no longer sanitize everyone who comes near her????

It feels good to be a normal mom (is there such thing???) but I really need to up my game. I feel so lost but I’m catching on!  We still go back for blood-work and check-ups every month to make sure there are no cancer blasts but I no longer worry, I’m confident she kicked it for good.

Block Party and a "kicked cancer's butt" cake

Our fabulous Doctors – Ricarchito Manera and Ellen Sarvita moved over to Christ Hospital in Oak Lawn in December to lead pediatric oncology/hematology; leaving us lost at clinic.  We intended to follow them there right away but the thought of being in a state-of-the-art, high-traffic center that treats even more kids with cancer comes with a feeling of dread.  I don’t want to meet more families with cancer, knowing many will not make it.  My heart can’t handle losing any more. I like our small little bubble at Loyola where we are healthy and done.  On the other hand, these doctors saved her life and our hearts belong with them.  It is a very tough decision that we still need to make.

Our home at Give Kids the World

So back to the good stuff…

Our buddy Mickey Mouse with Auntie and Grandma

The Make A Wish trip was incredible.  We stayed at Give Kids the World – an amazing village all run by volunteers dedicated to children with life-threatening conditions.  There was nightly entertainment, pools, a mini-golf course, arcade and daily parties - a dream come true for kids.

Make-A-Wish also included a dolphin experience at Discovery Cove and Kennedy had a special pass that got her (all of us) to the front of the line at both Disney World and Universal Studios.  We were treated like royalty. 

When Kennedy was asked what she would do if she could ever come back, her answer was “volunteer at Give Kids the World”.  I truly expected her to say “visit one of the theme parks again" or "go on such and such ride” but I had her pegged wrong.  Our kid has heart!

Being Wizards at Hogwarts

That’s all for now.  Check back again in 6 months (or maybe a year).  Cheers!

Kennedy's Kicked Cancer's Butt - 2.5 Years of Chemo Complete

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.

Two Years Ago...

Kennedy dressed up for the theater

Two years ago yesterday, on February 2,  we heard the words…your daughter has leukemia.  I remember sitting in the hospital room and thinking we’d never make it through this.  Two years have passed and we are not just making it but are doing so much more; we are living, all of us.  I remember thinking she wouldn’t be able to go to kindergarten, how scared I was that she would lose her hair, scared we would lose her….so many fears.  I can’t believe that was only two years ago.

Sleepover with Emily

We are lucky when it comes to this nasty disease.  So many outcomes were in her favor, the type of the leukemia, the risk level, her fabulous doctors and her tough little attitude.    We’ve seen so many other ways it could have been and are thankful every day it was just ALL, B-cell, low risk.  With two years of treatment behind us, we are hoping that the next 6-months of chemo will end her/our dance with cancer forever. 

They say it is five years until she is considered “cured”, for now she’s in remission and the chemo treatments are keeping the leukemia away.  In six months, the chemo treatments end and she will continue to be monitored intensely through the next 2.5 years.  The next 6-months can’t happen fast enough.

Making a volcano explode with Dad and Maddox

Kennedy is doing great in school and is a top speller and reader in her first grade class.  She is a sweet little girl with a very strong personality.  She outwits us and knows how to get what she wants.  We are the luckiest parents to know Princess K and watch her grow up.  

 For now, treatment continues.  She has vincristine tomorrow and starts a week-long stint of steroids followed by another dose of vincristine. These are the pulses we hate but luckily, this is the second to last pulse of this specific drug combo.  Her last vincristine/steroid mix will be in June.  She still has her spinals and nightly chemo to contend with but the really yucky stuff is almost over.

Just waiting to exhale.

Countdown Continues - 10 Months Left

Prepping for Halloween

Kennedy finished another cycle of steroids and Vincristine on Wednesday, the pulse she gets every 16 weeks.  I cannot lie; the last week was tough.  Kennedy’s surface area has increased (AKA she is growing but this is what the doctor’s call it), so her chemo has also gone up.  By day five, moaning due to muscular pain and nausea became common practice and I am so glad to have this pulse behind us.  In her treatment protocol, she has two more of these pulses left – yuck!

Great America Wild Child

To say we’ve been sleep deprived is an understatement.  Due to bad judgment on mom and dad’s part and a long day out on the boat more than 5 weeks ago, Maddox watched a scary movie and has been unable to sleep through the night since.  Couple that with Kennedy’s week of steroids and it has been reminiscent of having newborns – I can only imagine the sleep deprivation for parents of multiples!!!  At this point, we wonder if we will ever have a full nights sleep again.

At the MSI Disney Event

My cousin Nikki got married last Saturday and as much as Kennedy wanted to go, she just wasn’t up for it.  By Saturday, the steroid/vincristine mix had taken its toll and she just wasn’t feeling too well.  She sat this one out and got hang out with Grandma.  We promised Princess K she could put on her fancy dress and shoes for a different night out on the town.

First Grade Picture 

 Other than this crazy last week of steroid hell, all has been well.  Kennedy is in first grade and loves her teacher.  She is in gymnastics and dance and has a passion for life.  We’ve gone apple picking, to Great America and enjoyed some fall days on the boat.  Life is good and we are lucky to celebrate her life daily.

From this point on we have 10 more months of treatment left; so close but so far away.  I am grateful to our wonderful docs and loving support team, we couldn’t do it alone.