Tag Archive for leukemia

Quietly Celebrating an Anniversary

There are many anniversary’s and birthdays that we all celebrate throughout our lifetime. The month of August – actually the 14th of August to be exact marks a wonderful day in my family’s history.  The 14th of August, 2014 is the 10th, 10th (!!) anniversary of our son Zachary’s last day of chemotherapy in the treatment of his leukemia.  It is simply incredibly to me that 10 years have gone by since our last ride home from the clinic with Zachary.  Wow!  Time really does fly.

This celebration is one of those that I have been thinking about for a while, just because of the significance of my son, The Survivor.  My son’s very humble about this subject.  He does not really like a lot of hoopla over this anniversary date, this is more of a mom “thing”. And recently I talked to Zach about this date, and he said, “wow that’s right! I do remember.” (or something to that effect). I asked him if it was ok if I write about it, and said, “sure Mom”.

I wrote about Zach’s journey with leukemia a couple of years ago.  You can read about it here if you’d like to.  He was in chemotherapy for three years, which ended August 14, 2004.  This is one of those subjects in our family history I simply felt compelled to write about.  I felt compelled to share our story.

Zach’s last day of chemo was a great celebration it seems like it was just yesterday.  Travel Man arranged for a limo ride for Zach’s drive home from the clinic that day.  The limo was supposed to be the standard “stretch” variety, but what showed up at the clinic doorstep was a Hummer Limo.  Travel Man had explained to the owner of the limo company what we were doing, and the owner surprised even us with this awesome limo ride.  Zach and his siblings, and cousins had a fantastic ride home, through the In-n-Out drive thru, and had a blast.  Just the memory we parents were looking to provide for this guy.    He had been through an awful lot in three years and the limo ride was a great memory to the end of that time.

Zach’s 10th birthday newly diagnosed with leukemia

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Zach’s 23rd birthday – 10 year’s chemo free, and what a handsome guy!

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Fast forward to 2014- Zach is newly married.  He and his wife Brookelynne got married last August.  They will be celebrating their first anniversary in a week or so. Zach works with developmentally disabled adults, and is an amazing caregiver.  He’s healthy, energetic, philosophic about life, and a survivor.  Cheers to you Zachary!!  We raise a glass to you today and celebrate the fine, young man who you are.

This post linked to the GRAND Social

When I Stopped Sweating the Small Stuff-Part Three

At the beginning of Zach’s hospitalization for leukemia we had a tremendous education in what the course of treatment would be for the getting the leukemia into remission, and keeping it there.  We had several meetings with the doctors to discuss the course of treatment, and how the doctor’s would handle their communication between the endocrinologist, and the oncologist.  I distinctly remember the first discussion with the doctors around a table in this little conference room on the 4th floor of the Children’s Hospital, ward 4800.  My Dad was with me and he brought a binder full of information on diabetes and leukemia.  I really don’t remember any details of the meeting, I just remember how thankful I was to have my Dad sitting there next to me.

The course of treatment for Zach would last for three years, three years.  Wow!  We made the decision to put Zach in a clinical trial for his leukemia.  This meant that he would have extra monitoring, and would be followed after the treatments were completed.  It was my opinion that if there was any information that the doctors could gain in the course of Zach’s treatment I would want to know that we had helped another child going through the same thing.  The treatment that was chosen for Zach’s leukemia diagnosis was a “road map” that included chemotherapy via IV, tablets taken at home, and constant, constant monitoring of the blood counts.  We became experts at interpreting the blood count numbers.  And remember we are also dealing with the diabetes and insulin injections everyday too. Yikes!

Zach and his Grandma

The next item on our agenda after Zach got home from the hospital was setting up his homeschooling.  His fourth grade teacher, Mrs. Susan Thompson, graciously volunteered for the assignment.  Zach was homeschooled for the end of fourth grade and a good portion of fifth grade.  He had to be homeschooled as the risk of infection from any source was just too high.  Zach’s grandma is also a former teacher, and helped out with his studies and reading quite a bit.  Zach was allowed to go back to school in April of 2002.  He was so determined to get back in the classroom, and I realize now he just needed to have any sense of normalcy in his life.  We are forever grateful to Mrs. Thompson for taking such care and having tremendous patience during this year.

Zach’s time at home was such a rollercoaster ride.  It was a delicate balance of getting to his appointments on time, taking his meds when he was supposed to, and still trying to give him some sense of just being a kid.  It was a lot for all of us to handle, and especially for Zach.  He would have chemo and be nauseous.  He would be on steroids and have a huge appetite.  The balancing of his insulin throughout this time was closely monitored.  We called the endocrinologist a lot for help with adjusting his insulin.  I was constantly worried during this period, am I doing this correctly?  Is there anything we have missed?  The saving grace was the doctor could always be reached after hours, and during office hours you could always get a hold of a nurse, and get help.

I have to remind everyone too that Zach was not an only child.  I had three other kids to attend to, mostly emotionally.  Zach’s oldest sister Naomi was 19 going on 20 when Zach was being homeschooled.  Naomi made the decision to stop going to school to stay home and help with Zach and his weekly appointments.  She was so helpful during this time, I don’t know how we would have gotten everything done without her.  My daughter Hilary, had just turned 14 when Zach was diagnosed.  She was very busy at school with volleyball, and she was always so helpful with entertaining Zach.  Zach’s big brother Bryan was 12 when he was diagnosed.  Bryan loves baseball, and was playing Pony League ball when everything happened with Zach.  Bryan’s games gave all of us an outlet for getting away from our new routine.  It was great watching his games, and getting Zach out of the house for a bit.  And if I remember correctly his team went to the playoffs during this season.  The great thing about this bunch is they are devoted to each other for life.  They all learned how to do Zach’s insulin injections so they could help out if needed.  And they all learned how to do an emergency injection for Zach if he had an extremely low blood sugar, and was not coherent.  Not the kind of things you expect to have to teach to your teenagers.  They are a caring, and compassionate bunch, and would do whatever they had to do to help their baby brother, and each other.

July of 2001 brought a trip to Ronald McDonald Camp for Zach.  The camp is up in the hills in Idyllwild here in Southern California.  It was such a great week for Zach.  He just got to go up there and be a kid.  They have doctors and nurses on Staff to help the kids through the week.  They put on a wonderful program.  Zach was able to go to camp twice during his treatments, and it was a great outlet for him.

The remainder of 2001 we were all focused on getting  Zach through his treatments, and helping each other get through the days and weeks with a smile on our faces.  I remember asking Zach how he was doing one day in the fall, and his reply to me was, “I’m doing ok Mom.  I just have to keep my attitude positive, because that’s all I can do.”  Such a grown-up 10-year-old, wise beyond his years.

As we embarked upon Thanksgiving and Christmas in 2001, the emotions of the year were taking their toll on the kids.  Their dad had left us in February, Zach was diagnosed with leukemia in April, and now it would be their first Christmas as kids of divorce. Little did we know that life would throw us another curve before we even got to Christmas Day.  

 

When I Stopped Sweating the Small Stuff – Part Two

Continuing our life story, is like a very necessary counseling session for me.  It has taken a lot of careful thought and discussions with my husband and kids to get to the point where I can share our story with you all so openly.  I have always felt I should write this story for a Family Circle or Woman’s Day article.  But since I have the medium of my own blog I am so pleased to be able to share it with you here.

Our family’s next life curve was so unexpected, that words alone cannot begin to describe the heart sinking news we received about Zach.  2001 was a devastating year for our country with the tragedy that occurred on September 11th.  However, prior to 9/11 our family suffered its own tragedy.

July 2001-Off to Ronald McDonald Camp

Zach was 9 years old in 2001, and would turn 10 in July.  By this time he was handling his diabetes, and were constantly working on counting carbs correctly, and making sure that he tested as many times as he should be each day.  Zach was in the fourth grade, and was playing NJB basketball with his friends.  In the January-February timeframe of 2001 Zach kept getting the flu, and was having a hard time getting back on his feet from it.  Then he had this weird allergy that was causing his eyes to swell shut, and he had to wear sunglasses all of the time to stay comfortable.  If I remember correctly he was treated for the “eye allergies” twice.  One Sunday, in April,  the kids and I went out for breakfast, not something we did very often, as I was a single parent at this time.  Zach’s sister, Hilary, noticed that his hands looked somewhat yellow, kind of like a jaundice.  Then after we got home Zach was laying on the floor watching tv and I noticed his feet looked the same way.

On this particular Sunday, I took Zach to urgent care, as I was concerned because of the flu, the allergies, and now his feet and hands just looked yellow.  Something was not right, and with his diabetes my gut was telling me get this checked out, pronto.  We had a blood test done, and the results would not be back until the next day, so we went home to wait.  There was no diagnosis, or suspicion of any diagnosis offered.

The next day at work I received a phone call from the nurse at the doctor’s office.  Zach’s results were back and the doctor wanted Zach to go to Loma Linda Children’s Hospital right away.   The results from the blood test showed that Zach’s white blood count (WBC) was extremely elevated, and they could do additional testing at Loma Linda right away to find out was going on in my little 9 year old’s body.  This was our second emergency room visit to Loma Linda.  The first visit there was when Zach was diagnosed with diabetes.

After additional testing, and what seemed like an eternity of a wait the doctor came into Zach’s room, in the emergency room.  He started to say to me with Zach and his Dad in the room, “We suspect your son may have Can…..”.  I cut the doctor off and said we needed to step outside.  I knew what was coming.  Zachary had cancer.  The Big C had infiltrated my family, and my baby boy was diagnosed with ALL (acute lymphoblastic leukemia).  

I remember letting out a bit of a yelp, and then I told the doctor that I needed a phone.  I had to call my parents.  My memory is a little sketchy here, but I remember a chaplain in the ER helping me find a private phone to call my parents.  I’m sure all I did when my Mom answered the phone was cry.  Zach’s dad and I broke the news to him, and we were all so frightened, and bewildered, and shocked.  I remember Zach crying and comforting him, and then things are just a blur.  He was admitted to the hospital, of course, and our education on the treatment for ALL would begin in earnest.

In the following days after Zach was admitted to the hospital so many things were going on.  What are Zach’s chances for survival?  What will the treatments involve?  How quickly can we get the doctor “on duty” reassigned to be Zach’s primary oncologist?  You see the doctor assigned to Zach’s case in the ER, how shall I say this politely, she just didn’t work out.  Who would spend the night in the hospital with Zach?  Who could be at home with the kids?  So many issues and decisions to be made at once, how could we possibly get through all of this. 

We got through the first few hectic weeks of Zach’s diagnosis one hour at a time, one day and a time, and ultimately one week at a time.  When you are in crisis mode, as we were, you can only focus on what’s right in front of you.  With the help, care and compassion from my amazing family we muddle through those first few weeks while Zach was hospitalized.  And I have to say the best day of 2001 was Mother’s Day.  Zach came home for Mother’s Day after almost three weeks in the hospital.  I couldn’t have been happier.

So now at not quite ten years old my son had a primary care doctor, a pediatric endocrinologist, and a pediatric oncologist.  Never in my wildest dreams about having a family and raising kids, did I ever imagine that any of my kids would have to endure what Zach was about to go through.

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