Tag Archive for Children’s Hospital

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.  


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