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.