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.

11 months to go!

Toothless boater

It’s been a while since my last blog, mostly because we’ve been busy living life to stop and reflect.  Kennedy’s upbeat spirit and health amazes us everyday.  Although she still has 11 months of chemo to go, we all know in our heart of hearts that we have won. 

So what do the next 11 months entail?  The ugly pulse of steroids every 16 weeks for seven days – we have three pulses left.  A lumbar puncture (spinal) every 12 weeks, the next one is in 2 weeks and we have a total of 5 left.  Nightly chemo, weekly methotrexate and blood checks, wrap it all up.  Even with all the meds, we know we are at the finish line and finally see the light – how exciting!  The only downside is the patchy hair and the nausea but that too will come to an end in 11 months!

Promoting CureSearch on NBC5

We had a fun summer and last week Kennedy started first grade, she loves it!  She will also start gymnastics and dance this fall.  She is mostly a normal, healthy upbeat kid.  We are still very cautious of germs but have been more lax during the summer.  We definitely have to kick it up a few notches for school as the last cold gave us a week’s sentence in the hospital.  Her classroom is stocked with a gallon of hand sanitizer and tubs of Clorox wipes, just to be safe.

This weekend we will participate in the annual CureSearch walk and invite all of our friends and family to join us.  The walk is in honor of those who have won, lost and continue to battle childhood cancer.  We hold the CureSearch organization near and dear to our hearts because Kennedy’s chemo protocol is backed and funded by them.  If you haven’t already, sign up and join us at http://www.curesearchwalk.org/faf/search/searchTeamPart.asp?ievent=1058084&lis=1&kntae1058084=F70025518FDD409DADF81E21D1E85F49&team=5473560For those of you that have signed up and/or donated, THANK YOU!!!

That’s all for now.  If you don’t hear from me, assume all is normal – as normal as normal can be.

Halfway done!!!

Maddox being a good big brother at clinic

We passed the halfway mark and it feels incredible!  Back in February of 2012, we never could have imagined time would pass so quickly.  Kennedy’s last few weeks have been incredible.  It was truly sucky having to head back to clinic today for a big whammy of chemo.  But hey - we are halfway done!

Today's procedure was a LP (lumbar puncture – similar to a spinal tap), an infusion of Vincristine and also started steroids.  Just when things start feeling normal, we get an ugly round of chemo to kick her butt.   To top things off, doctor missed her spinal draw of fluid and had to poke her 3 times, both Gene and I felt completely ill in the procedure room.  Thank goodness that part is over and we are home.  She’s feeling some pain in her back and has been nauseated but other than that, she’s in good spirits.  

Kennedy in her HIP HOP recital gear

Since it has been forever since my last entry, I will do a quick run down of what has been happening.  Kennedy finished kindergarten and is now a big first grader.  She had a great dance recital two weekends ago and has been keeping herself busy this summer with gymnastics and tennis.  During the week she stays home while Maddox attends camp.  To keep her busy, we have Molly camp every Monday and Wednesday (we love Molly!!!) and Grandma camp on Fridays.  She also loves to go across the street and hangout with Gina and Cannon when they’re home.

One of the coolest things that has happened is K had her room redone by Special Spaces Chicago.  A neighbor and friend referred Kennedy for a room makeover and they did a beautiful job.   In one day they turned her space into vintage princess quarters.  I can’t thank them enough.  It was more than a room but a new beginning.  At diagnoses Kennedy spent many sick days in her old room and the refreshed look symbolizes a beautiful and healthy new beginning.  Words cannot our express our gratitude for what they did for her.

Other than that, we have been living our new normal.  This means sanitizer and Clorox wipes everywhere we go.  Believe it or not, we’ve been given a hard time by friends (acquaintances) - saying that we can’t protect her from everything and treating us like we’re nuts. Oh well, so we’re crazy!

A beautiful room for a beautiful girl  - thanks Special Spaces

We spend our weekends boating or on the beach when we can.  We still need to be very cautious and Kennedy is not allowed to go into the lake past her waist, swim in public pools or bury herself in sand past her waist.  We all know the rules of our new normal which often makes us oblivious to the fact that she is fighting leukemia or we just choose to forget when we can.  In just 14 months left and we can officially claim that Kennedy kicked Cancer’s ugly butt!

Lastly, I will start making everyone crazy soon for the CureSearch walk.  It is September 7 at the Soldier Field Lawn.  This is the organization that is backing Kennedy’s treatment protocol that is working so Save the date!!!!

Celebrating 6 Years Old!

Happy birthday to our beautiful little 6 year old!  What an amazing weekend – getting to celebrate Princess Kennedy’s 6^th birthday.  A little over a year ago, we didn’t even know if 6 was possible, now we know everything is possible! 

Things have been normal over the last month, which is great.  Being typical me, I never have enough time to sit down and catch up.  Since my last post, Kennedy had a spinal, some blood draws and typical LTM procedures.  Maddox went to her last spinal procedure and got a kick out of Kennedy waking up from the Ketamine.  I think she told him she loved him at least 20 times and ensured him that he had 4 eyes and 2 noses.  Kennedy is keeping up with gymnastics and dance and has been doing very well in school.  Can you believe she reads at a first grade level?  This too is amazing as chemo brain often causes learning disorders.

Shortly after my last post, our 13-year old floor friend Tyler passed away, as did 3-year old Jordan .  We were able to pull off an amazing experience for Tyler the Thursday before his passing.  I am grateful for everyone who stepped up to make his last days with his family amazing.  I only wish I could have done more and was secretly hoping that a little happiness would somehow save him. 

For now we are all  just staying busy and counting our blessings.  1 year, 3 months and 10 days left of chemo left.

Kennedy's Home and Team Tyler

     

Reading in the hospital with a rocking t-shirt.

Kennedy is home and is doing much better.  Her fevers stopped and we were released on Sunday night.  The blood transfusion helped up her counts and the chemo hold helped her liver recover.  We went to clinic today and her liver counts were nearly normal and her ANC was 700, all good.  We resumed chemo tonight.

I know I’ve said it before  - but we are lucky.  We are lucky because Kennedy has ALL Leukemia and is low risk.  She is doing a fabulous job of kicking cancer’s ugly ass – excuse the profanity.  Unfortunately, not all kids and families are so lucky.  Tonight I will tell you about Tyler Blatt.

There are a lot of things one is exposed to while spending a week in a hospital.  One, you see families grieving for children who choose to take their own life unexpectedly,  you see families that leave their children to sit alone in a hospital room all day, you see a tremendous amount of love and support when families face the news of despair and you also hear about fellow cancer patients struggling with their battle. I was hit hard this stay partially due to Jordan (the little boy I mentioned before) but mostly due to Tyler.

Miss. K helping make dinner

Tyler is 12 years old, maybe he is 13 now.  Back in March of last year, I met his mom Nancy when like us, they were hit with the news of Leukemia.  For Tyler, it wasn’t low risk ALL but a complicated form of AML.  Tyler had fallen playing basketball and was complaining of some pain.  Never would they have ever imagined the pain was caused by AML Leukemia.  They’ve had a tough journey.  We had six inpatient weekend stays at Loyola and for most of them, Tyler was inpatient.  I admired Nancy’s upbeat attitude and found the window chalk they used in Tyler's room really cool.  It’s funny the things your remember.  Mom made it so cool for Tyler to be stuck there.  The last time I saw Tyler was at last year’s Cure Search walk and I was so excited he was finally out of the hospital; that was in September.

Unlike Kennedy, the chemo didn’t work for Tyler.  He’s been subjected to chemo that most grown men couldn’t handle, that plus radiation and other intensive cancer fighting therapies, Tyler's body is tired.  At this point they are done fighting.  So why am I sharing this?  Well, I’m hoping to make Tyler’s next week/months AMAZING.  My heart is broken and I can’t even imagine what they are all going through.  I really don't know what else to do but give this kid some happy time.

This is Tyler (I stole this from his blog). 

I NEED HELP from everyone.  Any connections you have; please use them.  Theater, museums, any cool experiences you think Tyler would enjoy, let’s donate them.  A family photo shoot, a dinner out somewhere fun, a chance to do anything really cool,  a huge silly cake, anything!  I too am exhausting all of my resources so expect some calls!!!  Out of respect for the family’s privacy, if you would like to donate some fun for Tyler, please reach out to Megan Gertz, child life specialist at Loyola, her email address is  megertz@lumc.edu

I ‘m not one to ask for things but I need this for them; they need this.  Thank you in advance for anything you can dream up!  Experiences are needed more than money.