Leukemia Lymphoma Society - Light the Night Kick-Off

Today I took Charlotte in for her monthly Chemo apointment. Her appointment was at 8:30 am. We left the house in time, but had to turn around just outside the neighborhood because I forgot to put on her Emla cream - a numbing cream that makes it so she doesn't feel the needle inserted into her port. 

We still would have been fine, except there was an accident on I-15 that delayed us. We were stop and go from Point of the Mountain until 114 South. This section of the commute is normally a 5-minute drive and it took over 20 minutes. As I pulled off I-80, Charlotte, who had been extremely quiet, announced from the backseat that she threw up...3 times. The stop and go was too much for her belly. Thankfully, we have barf bags that they gave us last August when we left the hospital. They have been hanging out in the seat pocket behind my seat. My smart girl grabbed one, and made sure she didn't spill a single drop. 

At the clinic, we learned she grew a half-inch in the past month and her blood counts are looking good. Charly received chemo, a Sprite and some crackers, and some Zofran to help with the nausea . We left in time to get to Rio Tinto for the Leukemia Lymphoma Society's kick-off event. (Rio Tinto is the stadium for the REAL Salt Lake soccer team.)  Sean, my sister Heather, and my mom also came, but Sean said Naomi didn't want to come, so she stayed home.  She missed out on some nice food - and a pretty awesome brownie.  I was going to snag one for her on the way out - which may or may not have been eaten before it got home - but I kept getting waylaid on my attempts to go to the buffet table, that I never did get a second one.  I would estimate there was about 80 people there - and about 200 brownies on the platter.  Not to mention what was on the cookie platter.  I would call that a healthy dessert-to-diner ratio.

As Charlotte is an honored hero for this year's walk, the Utah Chapter with LLS asked me to share her story and tell people why we feel it is important to support LLS. I've been fussing over it for the past 3 evenings. My first draft was 4 pages long, and still hadn't included all the important things I wanted to share.  Nor did it keep a coherent theme.  It went through 4 re-writes, and 2 verbal practices.  Naomi sat and laughed at me when I practice aloud with her - because my tongue wouldn't cooperate in reading the words.  I also would stop and mark it up a lot.  They requested I take 3-5 minutes, and my first run through took 8 minutes.  After going over the draft so much, I thought I wouldn't cry, but I did. It started right at the intro when I motioned to Charlotte's photo on the screen and said "This is my daughter Charlotte".  

I rebounded, but there were a few other moments.  I'm just glad my voice stayed out of the squeaky range, and nobody filmed this....I think.  There was that lady from the LLS taking photos.  Digital cameras these days can do anything.

Here's my speech from yesterday:

Roughly 4 years ago, my father broke his arm by simply tightening a screw to fasten on a light switch cover plate.  As a retired military colonel, he was very good about getting regular physical exams.  However, somehow it took this action to lead him to the practitioner who finally diagnosed him with Multiple Myeloma, a blood cancer that had progressed to the point where his bones were so frail, the action of turning his wrist broke his arm.  Dad received chemotherapy, radiation and underwent a bone marrow transplant.  The treatments would appear to work, only to find that the cancer would rebound aggressively. After an 18-month battle, dad passed away April 2011.  I wanted the kids to know their grandfather, and we tried to visit Grandpa Doug every week since his diagnosis.  This was my daughter Charlotte’s personal experience with cancer.

Last July, Charlotte (also known as Charly) was playing with the neighborhood kids. As I watched, she stumbled, appearing to twist her ankle.  She shook it off and was back to playing with her friends with a slight limp.  The limp persisted over the next week.  I delayed bringing her in because the limp seemed to change to different legs on different days, and some days it would disappear entirely.  At the same time, she also had these strange recurring fevers.  The fever would last a few hours, then it would break, and she would be fine.  A few days later, the fever would return.  I remember coming home from work to hear she spent the day on the couch watching TV. I was concerned, but thought she might be recuperating from a summer bug.  It was on vacation that the mysterious fever came again, and the next morning Charlotte complained that her legs hurt so badly she couldn’t walk.  Instead the planned hike, we drove over an hour to an Instacare in Cedar City.  The doctor on call looked Charlotte over and took an x-ray of one leg, said it looked fine and sent us back on vacation. 

When we returned home, Charlotte was still limping.  After another mysterious fever, and voluntarily going to bed 2 hours before bedtime, I made another appointment.  Our regular doctor was out, so we went to a young practitioner who was covering the after hour appointments.  The doctor took a strep culture and looked worriedly at Charlotte.  When the strep culture came back negative, she turned to me and said “We don’t usually like to do this with kids this young, but I think we should take a blood sample and see what might be going on.  You will hear back in a few days if there is anything concerning”.  

Just past midnight, I was awoken by the sound of the telephone ringing.  By the time the sound registered, the call had gone to voicemail.  I stared at the caller ID – IHC Hospital. Thankfully, the phone started ringing again.  It was the doctor that we saw earlier that evening.  She told me that she received Charlotte’s blood results and they were very concerning.  She directed me to pack a bag for Charlotte and to drive to Primary Children’s Hospital right away. The ER staff would be waiting for her. She warned me to drive at a safe speed, but to please bring Charly in right away and to plan on Charlotte staying a few days.  The drive from our house to Primary Children’s was surreal.  I remember driving and paying close attention to the speedometer.  Charlotte was extremely upset and tired, asking why they couldn’t wait until morning to see her.  We had no idea what to expect.  By 2am, we were checked into the ER and Charlotte received an IV and her 2^nd blood draw.  At 5am, two doctors came into the room and broke the news – Charlotte had Leukemia. 

We were told Leukemia is very treatable, with high success rates in Charlotte’s age group.  As I listened to the doctors, my father’s recent battle with cancer was heavy on my mind.  Would Charly be able to beat cancer, or would the medications prove unsuccessful as they had with dad?  What would we do? Where would we go if the doctors were wrong?

We went directly from the ER to Primary Children’s Immuno-Compromised Unit. Charlotte was there for a total of 5 days.  During that time, she received multiple x-rays, blood tests, blood and platelet transfusions, an EKG, bone marrow biopsy, spinal tap, surgical placement of her central line and her first doses of chemotherapy. She also was introduced to the joys of ROOM SERVICE! After the bone marrow biopsy, we were given Charlotte’s official diagnosis - pre b-cell Acute Lymphoblastic Leukemia (ALL). 

Instead of starting first grade as planned, Charly stayed home and started her fight against cancer.  We were warned to expect the first 9 months to be the hardest.  Every week, sometimes twice a week, we visited Primary’s for chemo.  We also were required to give her medications at home, every month had a different medication.  Along with chemo, Charly was on steroids for the entire first month.  Along with being an effective drug against cancer, steroids also are known to make you extremely hungry.  In less than two weeks, Charlotte gained 7 pounds over 15% of her entire body weight.  Her almost waist length hair started to fall out in large clumps exactly 2 weeks after her diagnosis.   It fell out so rapidly, that all that was left at week 4 was blond dandelion fluff.  I remember standing by her in the bathroom, watching her look at herself in the mirror – Hair gone, her face round and moon-shaped.  “Mom” she asked me, “will I ever look like me again?”

She had monthly lumbar punctures (also known as spinal taps), and there was one month when she had them every week.  Charlotte was one of the less-than-10% of patients that experienced a seizure from the medication placed in her spinal fluid, resulting in an ambulance ride to Primary’s.  Thankfully, it only happened once. 

Charly reached maintenance by mid-April this year.  (had to stop for the applause)  She joined her first grade class for the last month of school. “Mom” she told me one day after school, “I am famous, everybody knows me at school.”  

Our weekly chemo visits are now monthly, and our monthly lumbar punctures are now quarterly.  She takes steroids at the beginning of the month, and chemo pills every night before bed.  If all continues to go well, Charly will continue to receive chemo until November 2014.

We feel very supportive of the Leukemia Lymphoma Society because there are still many others, like my father, whose battle with blood cancer is not going well.  There is still a need for improvement.  Further research will lead to less invasive treatments, with less harmful side effects and ultimately a CURE.

Tomorrow marks the one-year anniversary of that infamous midnight call.  Charlotte’s bravery and cheerful spirit have amazed and inspired our family and friends.  She is a survivor.