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.  

Inpatient at the Big House (AKA Loyola)

K and her new bald barbie

We were sent to the hospital on Monday night.  Kennedy had a 102.7 fever and instead of being directed to the emergency room, doc told us to have her admitted.  We are still here.

For the most part, outside of the cough and fever, Kennedy was feeling chipper for the first 2 days but has been feeling icky the last two, likely because she has been up coughing all night with an intermittent fever.  Her viral culture came back as Rhinovirus, which is a cold and no bacteria has grown on her blood cultures to say it is anything but that but they still have her on an antibiotic.

Warning Signs on her door

Her liver enzymes are 30 times the upper limit of normal so she is officially on chemo hold for at least 1 week until they go down to normal range.  Her ANC dropped from 19,000 last week at clinic after steroids to 300 which means she is neutropenic.  Her hemoglobin is low and she will be getting a blood transfusion today.  I’m not sure where all of this is coming from; it seems scary that a cold could cause this much distress on her body.

  

We escaped the room - shh don't tell

There are hazard signs on her door advising all nurses and visitors to be dressed in masks, gowns and gloves before visiting because she is contagious.   This also means Kennedy cannot leave her room and go to the playroom or for walks. I like the extra precaution taken by docs and nurses; I am especially grateful for the signs since she is neutropenic.  I can’t even tell you how many times docs and nurses didn’t wear gloves when the signs weren’t up.

Arts and Crafts

Last night, to prevent K from going stir crazy, we broke out (dressed in a mask and gloves) and went for a walk down the hall.  I also learned that dad did the same during the day.  It’s funny how breaking the rules makes her so happy!  It’s tough being in solitary.

We are hoping to go home on Saturday.  We need to be fever free for 24 hours and her white blood cells need to go up to be sent home.  So far, no such luck.  So we wait.  Praying her liver counts to down, her hemoglobin goes up and her fever stays away.

Special Spaces, Strike out Cancer and other wonderful things

  

K with Maddox at Wrestling

Yesterday was clinic and the beginning of maintenance cycle 3 of steroids and Vincristine.  Already we see a big change in her personality and cannot wait for this pulse of chemo to be over.  It concludes with another dose of Vincristine next week.  I received 3 calls at work today from Kennedy about her hair falling out and Gene has experienced the wrath of hunger, thankfully it is just seven days.  Not sure what is up with the hair!

Just being normal

We have been involved in some wonderful programming this month.  Gary and Alex (Kennedy’s BFF’s parents) nominated Kennedy to be the “Patient of the Year” for the annual bowling Strike Out Cancer event.  She received a ginormous bowling belt.  When the belt was presented, I must admit it was quite surreal.  The young man who presented Kennedy with her trophy told K’s story. I was so sad.  I felt so bad for the little girl and family going through childhood cancer but that family was us, me, her.  I was amazed at how far I’ve removed all of us from the equation; we just pretend everything is okay so often, we really do believe it.  Maybe that is a good thing.

K with her Strike out Cancer Belt

Brave at clinic - no tears!

Our neighbor and friend, Laura, also recommended Kennedy to a girl friend who is the director of Chicago’s chapter of Special Spaces, an organization that redesigns bedrooms for critically ill children.  Kennedy will be the organization’s second room remodel.  Kennedy is ecstatic.  I received a call from Kelly Knox, the Chicago chapter’s director and within a week, the entire team came out to meet with Kennedy to get her feedback and ideas. It was an amazing experience.  Kennedy’s new room is scheduled to be complete on May 4, one day after her 6^th birthday.

Teary eyed moment for mom

K with Ella at clinic while we were away

I’ve been bad about blogging lately because everything has been normal.  We feel like we have a normal life.  So here is my update since my “Toxic Liver” post.  While on vacation, Kate, Ella and Grandma Linda took Kennedy to clinic and everything went well.  K’s liver counts were only 10 times more toxic than normal (down from 20).  One week later at clinic they were up 12 time the upper limit, still within acceptable range.  One month later, she is still trending at 10 times the upper limit of normal.  The doctor told us to expect liver toxicity, it is just a part of the chemo treatment and it is hard on her organs.

That’s all for now.  Praying that we will get through the next 6-days without pain or incident.  Fingers crossed.

Toxic Liver

Getting hydrated at clinic

This week threw us for a loop.  When things seem to be going well, there has to be hiccup.  We planned an adult only get away; that should have been our clue that something was going to happen.  Kennedy started showing symptoms of a cold last Friday; which kept Mom and Kennedy home from a ski getaway with Dad, Maddox and some friends. K started feeling better on Wednesday and we were all set to send her to school on Thursday - wrong.  Thursday morning she threw up.  This made me worry and I started to add up symptoms – bruising, joint pain, headache, stomachache, nausea, cough, stuffy nose, night sweats, weight loss - the same symptoms we saw when Kennedy was diagnosed.  I stayed home and called Dr. Manera and he told me to bring her in on Friday morning.  She threw up again on Thursday night and was miserable.  I did everything I could not to panic.

Friday it snowed and the world forgot how to drive.  It took us nearly 1.5 hours to go 25 miles to clinic  When we did get there, doc determined K’s counts were good but she was severely dehydrated.  They pumped two bags of fluid into her and sent her home.  She also lost some weight (3 lbs) so we were able to decrease her weekly chemo by ½ pill – which was fine because I took it upon myself to decrease it by that much the night before.  I mean, who can give a pill that causes nausea to a kid that just threw up so I gave her the smaller dose.  (She takes 1.5 pills of 6mp four times per week and 1 pill 3 times, I gave her 1 on Thursday night versus the scheduled 1.5).

Two hours after we left clinic Dr. Manera called, our conversation went something like this (of course this is abbreviated to edit out me panicking):

Doc: “We got her virus culture back and it is rino-virus, aka the common cold”

Me: “That’s great, just a cold…hmm, why is she throwing up?”

Doc:  “Lots of kids have been very sick from rino-virus, in fact, I’ve had to hospitalize a few for dehydration and fevers”

Me:  “Okay, guess we are one of the lucky ones”

Doc:  “There is another thing….her liver enzyme counts were very high, more than 20 times the normal level of toxicity”

Me:  “Well, what do we do, what causes this?”

Doc:  “It could be the chemo, we will need her to come in on Wednesday and have her blood taken again for counts, if it is still high, we will need to put her on chemo hold”

Me:  “Oh no, Gene and I will be on vacation, should we stay home?
Doc:  "No, no big deal, lets test her the following Monday then"
Me:  "But then she will have another round of Methotrexate on Wednesday night, I’m sure I can find someone to take her”

Doc:  “Just make sure they have a POA”

Normalcy - K lost her first tooth

I got off the phone and flipped out.  First, how could I send K to clinic with anyone but us?  Then, of course I played doctor by researching on the internet and learned that many docs stop chemo when the patient’s liver enzymes are 5 times toxicity.  Of course I paged the doctor back and told him we should put her on chemo hold now.  He talked me out of it - stating that by Wednesday it might go down, it could just be from the cold and dehydration.  I made him swear that her best interest was taken into account, regardless of the protocol.  He assured me her best interests were being considered first.  I can’t do anything but trust him, he is one of the best and he told me he’s seen this countless times.

Then the planning started…do we stay home?  Do we send her to clinic?  If so, with who?  No one knows where clinic is, or about how we don’t sign in, where to sit so we are away with flu-sick peds kids, how to put on Emla cream pre-clinic, etc.  I called 4 people to figure it out – Grandma and my 3 new friends that I made from clinic during the past year - Kate (Ella’s Mom who’s been through this), Donna (her son is also in treatment) and Megan (the child life specialist at Loyola).

Cookies made by K when sick

We figured it out.  Kate is going to go to clinic with Grandma and Donna and Megan will be there too.  Kate even made it one step more special by letting Ella miss school to keep Kennedy company. Kennedy is ecstatic she can sleep at Grandmas the night before and can’t wait for her clinic play date with Ella.  She hasn’t had a play date in months!

I spent the last few days scheduling every day we are gone.  Who goes where when and what meds are given on what days and who will give them.  I have a daily calendar that is structured by the hour.  For me this is huge, I am NOT an organized person.  If anything, we are 5 hours away.

Now to get on the plane tomorrow morning….