leukemia & Joey: The Story of his Diagnosis

How does one begin to tell the story of the time their child was diagnosed with cancer?   People usually call leukemia – leukemia.  They say it like it is a disease unto itself, but it is cancer.  It is a cancer of the blood.  There are many types of leukemia, and the prognosis can depend on age, type, and how long you have had it.  My Joe was nine years and four months old at diagnosis.  He was just under the 10-year-old mark at which after ten, the prognosis becomes different – so I guess that makes us lucky?

Every Story has a Little Background

When you are pregnant with a child who has Down Syndrome, you do your research.   I had every prenatal test done that I could.  I wanted to know what I could potentially have to deal with when he was born.  So many DS kids are born with very prominent physical problems, such as heart issues and stomach/eating disorders.  Many of those situations require immediate surgery.  In this instance, we were one of the lucky ones!

Joe would be born with a tiny hole in his heart that would probably heal on its own.  We could deal with that!  The only thing that you cannot predict is their muscle tone, hearing, and speech.  Muscle tone can be so varying, and I explain this in my previous blog on his Easter birth.  Speech, vision, and hearing milestones will come with age and are varied with each child.

Upon doing research, I also learned that a child with DS has a 20 times greater chance of getting leukemia than a ‘typical’ child.  That is a pretty high number!  Needless to say, that has always been in the back of my mind.

Our Summer Routine

Every August, as soon as camp ended, we drove down to our beloved condo in Sunset Beach, NC. The general plan was my husband, Freddy, would drive down with me and the kids.  He would stay for a few days, fly back home, and go back to work.  The kids and I would be on our own for a couple of weeks.  Then Freddy would fly back down, have his vacation for the last week and we would drive back to New York together.

My brother, Donald, and his wife, Marie, lived in the condo above us, and every year, we had different friends and family visit.  My friend Roe and her family were also in the town next door, so I was never really alone.

Fast forward to 2010 … The Road to leukemia

Monday, 8/16 

This particular year, one of my best friends, Patti, was staying with us for a while.  We were having quality girlfriend time with no men!  Anyway, throughout the week, Joey was having random fevers with night sweats, and I was treating him accordingly.  He was doing some constant complaining about being tired and not wanting to walk, but that wasn’t uncommon for him.  A lot of kids with DS are inherently lazy, and when given a choice, will be sedentary. One day we noticed a bite on his arm and together with the sporadic fevers, Patti (a nurse) suggested that he may have Lyme disease.  I thought she might be right and decide to take him to the emergency room the following day.  I never saw a tick, but with all the horror stories on Lyme – better safe than sorry!

Tuesday, 8/17

I took him to the Seacoast Medical Center ER and waited.  When we got to see the doctor, I explained the symptoms, and they decided to take blood.  What a horrific ordeal that was!  My son was freaking because the nurse was terrible at it, and I didn’t know what to do.  It took every ounce of my energy to try and soothe my son because my son was scared, but the nurse was complaining and making it worse.  Too much time was passing, and they eventually had to use restraints with me holding him. A memory that I wish I could erase, but I can’t.  We were traumatized by the whole experience and just wanted to go home.

Now we wait for the results to come back and when they do, the doctor says he has Rocky Mountain Spotted Fever – WTF?!  I thought that was a disease they made up on Little House on the Prairie!  He then informed us if it is not caught within a certain amount of time, Rocky Mountain Spotted Fever can be a deadly, tick-borne disease.   I was assured Joey would be ok because we found it early.  There is only one antibiotic that will work, and he gives us a prescription.   At this point, it is late at night, and there is nowhere for me to go, so I succumb to the fact that I am going to have to wait until the next morning.  The hospital pharmacy was closed, but they don’t carry it anyway.

Wednesday, 8/16

You know I got no sleep.  I was out of bed at the crack of dawn, and little did we know how difficult it would be to find this prescription.  My sister-in-law and I went to a Walgreens to fill it and were told we had to find a pharmacy that makes it by hand.  I live in New York – what the heck is a hand-made drug?  I never heard of this kind of thing, but we went on our way.

After much searching and many phone calls, we found a Mom and Pop pharmacy that could do it.  I pleaded, explained my son’s diagnosis, played the sympathy card with the fact that he had DS, and they very nicely rushed it for us.  Ahhhh … I could breathe a sigh of relief.  When you hear something can be deadly, waiting even 15 hours can be very stressful and frightening. My son would be ok!

Thursday, Friday and Saturday 8/19 – 8/21

The medicine worked right away, and on Thursday, we even went to the pool for a little bit.  We just wanted to get out of the house for an hour.  On Friday, we went back to the ER for a recheck, and the same doctor told me Joe was better and on the mend – YAY!  On Saturday night, the fever was back.

Sunday, 8/22

Sunday, we were on our way back to the emergency room.  For some reason I was particularly nervous and made my brother, Donald come with me.  I left Bella with her Aunt Marie, and we were off.  My heart knew something was not right.

When we got to the emergency room at Sea Coast Medical on Sunday morning, I noticed a bizarre rash all over Joey’s body.  I very soon learned that it was called petechiae.  This time we saw a different doctor who had a completely different opinion.  

Again we had to take a blood test with Joey freaking out and screaming, but this time, my brother got to witness the torture.  When talking to him about that day, he mentions he had taken pictures while we were there.  I don’t know why – nervous energy?  I have no recollection of that and thought it strange, but people react differently in stressful situations.  Nonetheless, he just shared them with me, so I am glad he did.

When the results came back, they said his white blood cells were high and his platelets were dangerously low.  It was one of two diseases: I honestly cannot remember the first one, but the other was leukemia.  I was given papers on both and told we were going by ambulance, two hours south to a children’s hospital in South Carolina.  They could not treat him there, and we had to go right away.  Wait – what??  This doctor meant business, and I was on my own.

First thing I did was call my husband to tell him that he had to get his ass down there.  Both disease options were terrible, and things were happening fast.  I am sure you can imagine my panic.

The Real Frenzy Begins

While I was in the back of the ambulance, my husband was frantically trying to get on a plane. His friend, Bobby Tippett, was driving him to the airport while his wife and my dear friend, Joanie, was trying to work magic and get him on a plane.  Even when Joanie explained the situation, they would not lower the price.  We all know how much it is to fly at the last minute.

Money isn’t important at the moment, but she was looking for some humanity.   Then when he got to the airport, they had given away his seat because he didn’t get there early enough.  Really – WTF?!

He pleaded with the airline people and as he said, ‘made himself known to everyone who could hear him.’   He needed somebody, anybody to give up their seat and let him on the flight.  The difference was somebody had to do it out of the goodness of their heart.  The airline was not offering any incentive.

I can’t imagine his panic and emotions.  My husband is the calm, cool, collected type – somebody I can always count on to be the rock, and for the first time ever, fear took over his body.  I could hear it in his voice as we kept going back and forth.  A man finally stepped forward, and Freddy had a seat on a plane.

Me – I needed a Xanax, and that is no joke. 

I was alone, and I already take heart medication.  I could not lose my composure.  It was of the utmost importance, that I stay in control and not succumb to hysteria or anxiety.   It was my job to be the strongest mom I had ever been, and there have been a lot of other moments.  This was the longest day of my life, and all I could do was pray to keep it together and not have a panic attack. I was hoping it wasn’t leukemia, but there was that little voice in my head from doing the research before he was born.

Meanwhile,  Donald is back at his condo, handling the whole family situation. They had Bella who was 10, Roberta had just gone back to Maryland for her junior year of college, Christine was on her way back from the Adirondacks, and Artie was living in Florida working on his sobriety.  They were all scattered up and down the east coast and trying to figure out the logistics of getting to North Carolina.  Everyone wanted to be there.

My little man was laying on the stretcher in the ambulance without a clue in the world to what is going on, and chatting with the paramedics.  Always saying, “it’s ok, Mommy.”  He knew something was wrong, but he didn’t understand the circumstances.

Truthfully, through the whole ordeal – he was the calm one trying to make us feel better.  I am not sure he ever complained after those first stabs in the arm ….

Click here for Part 2: The diagnosis and the road trip back to New York 

Much Love,

Sandy

#enlighten #empower #inspire #BeKind #pray