Still Maintaining with Maintenance - Cycle 3

Today, I brought Charlotte to Primary Children's for her monthly chemo appointment and her quarterly LP (lumbar puncture/spinal tap). As we drove to the 8am appointment, Charlotte grumpily asks from the backseat, "Why do they make me miss the most important meal of the day? Breakfast is the most important meal of the day! I'd rather miss lunch!"

When Charlotte has an LP, she goes under anesthesia. She is required not to eat after midnight, and no drinking for 3 hours before her appointment. I always schedule her as early in the morning as I can, so she doesn't have to go hungry so long. Her question made me laugh. If we scheduled a later appointment, I explained, she would miss breakfast AND lunch.

We get to the oncology clinic, Charly is checked in, weighted, measured, and her blood pressure taken. Charlotte has gained a some weight and grew a few inches. Her home chemo meds were adjusted slightly, to accommodate for the extra growth.

The oncologist told me they had the flu shot available, and asked if we were planning on doing Charlotte's shot in the clinic. I agreed, and asked if they'd give her the vaccine while she was under anesthesia for her lumbar puncture. Last year, Sean told me she went into hysterics when they gave her the flu shot. It was bad enough that both the oncologists recalled the incident. I figured we'd skip any drama if we just did it while she was under sedation. The docs agreed. The nurse administered her chemo through her port in her chest, and then we went across the hall for Charly's lumbar puncture.

The nurse apparently didn't have Charlotte curled tight enough and her spine wasn't quite straight, and the doctor put the needle in a little crooked and it sounded like he said to the nurse that he hit some bone. Also, the spinal fluid came out much slower than usual, she was starting to come out of sedation while they were still collecting their fluid sample. They finished administering chemo into her spinal fluid, and gave her the flu shot in her arm while she smiled drunkenly.

Charlotte is quite lovey when she's doped up. "Mom, I love YOU!" she declared frequently. The nurses giggled. At one point, she declared she needed to practice whispering. Then, she wriggled her finger for me to come closer. "MOM" she whisper-yelled in my ear, "lumbar punctures make me CRAZY!" and then she started to try and dance as she laid on the hospital gurney.

Charlotte's 2nd grade class was having their Johnny Appleseed party today. She really wanted to go. In the past, I have been warned to keep her quiet on her LP days. They recommend that she rest, to avoid getting a spinal tap headache. I told Mr. Trout that I would probably keep her home, and he promised to save her some treats. Charly asked the docs if she could still go to her party. They looked at her, shrugged, and said since she has never had problems with it before, and they didn't think there would be a problem if she went back to school. Charlotte was thrilled! We stopped to grab lunch at Arby's. Since it was near Naomi's lunch break, I texted her and took a delivery order from Naomi. I brought her and 2 friends delivery $.99 ham melts and value-size chocolate shakes. I think it made her day. Then I brought Charly to school.

Charlotte danced into school and attended for the final three hours of the day. When I picked her up, it appeared she was trying to keep her backpack from hitting against her back where she had the lumbar puncture. She still said she felt good enough to go to dance class today. It was the end of the month, and the dance teacher invites parents to come observe the last 20 minutes of class. I wandered in and watch Charlotte dance with the other kids. Charly is the tallest kid in the class. The dance instructor ended the class with inviting all the girls to do a "trick" to show off. Some girls twirled, some skipped, Charlotte took a running start and did a giant, energetic leap for her trick.

She just amazes me. She's superwoman.

Calendars

Every year, about this time, I am immersed in preparing for our annual DVD and course catalog.  During the preparation, I frequently work on the next year’s plans while referring to past year’s actions.  I am required to juggle multiple calendars, and have been known to get confused as to what year it actually is.  This is the time of year when I purchase a new calendar for the upcoming year and start entering in dates.

First, comes birthdays – in a lovely maroon.  Next, comes holidays, always in a bright green.  Then, comes school holidays marked in a light grey. Then comes the non-profit company’s courses – they go in baby blue.  Our film dates go in marked in turquoise blue, and our courses in Utah go in using orange.  Finally, all the other privately contracted lecture dates go into the calendar in pencil – because I am always warned that they aren’t final yet and may change.  Later, when I know which dates I’m traveling, the dates and flights that I travel are entered in a lime green.  **ahhh** Color-coding with narrow-point Sharpies, it just makes my heart happy.

Yesterday, as I started to enter dates into my new 2014 calendar, I opened my 2013 calendar to copy down the birth dates from one year to the next.  My 2013 calendar was once pristine, like my 2014 calendar currently looks.  However, now its entries are crammed and jumbled together, sometimes with arrows pointing to the date with a note on the margin, because the square representing that date was too full to squish another appointment into the box. As I turned each page month to month, I noted how many of those entries were for medical appointments.  It just struck me to see a written record of all the times spent with home health nurses or in doctor’s offices in one year. 

A rough tally of my calendar counts 105 medical appointments – from August 2012 to August 2013. This is including the mundane dentist check-ups, orthodontist check-ups, visits to the general practitioner for flu shots & colds, annual physicals, and not just ER trips and oncology visits, CBC blood draws and hospital stays.   This isn’t even counting 3 weeks of Sean’s cardiac daily rehab appointments, because other people helped take him after I went back to work. 

I have also been keeping track of our mileage we have driven, for tax purposes.  Did you know that mileage to and from medical appointments can be included with your deductible medical expenses? From August 2012 to August 2013, we have driven a total of 4589.93 miles for medically related reasons.

Medical/dental bills from August 2012 to August 2013, BEFORE insurance payment/deductions, tally up to $241,833.67.  I have been keeping a spreadsheet that breaks down the original bill, the insurance deductions/payments, and our payment responsibilities. Thankfully, our responsibilities have been much less. (Let’s just say we could have bought a new car instead.) 

Some days, I feel exhausted, even though I know I haven’t expending the physical energy to feel that way. Looking back at the past year and seeing the cumulative total of everything, the feelings of exhaustion make more sense. However, each day on its own, has been manageable.  That’s my life - just taking it one color-coded calendar square at a time.

Artwork for Olympic Helmet

Tuesday we met with Leukemia Lymphoma Society (LLS) regarding a fundraiser they are attempting. As "Girl of the Year", Charly and I attended and joined the "Boy of the Year" and his mother.  Already, the boy’s name is gone... it starts with an "A".... I'm 80% sure it's Ashton... and his mother is Krista.  I'm positive about her name, because I said, "Nice to meet you Kristen" and she corrected me, "It's Kris-TA".  That's great, I needed the emphasis.  I like when people do that.  It takes me a while to learn names. I'm REALLY bad at it.

Like Charly, Ashton was not very vocal.  He is 8-years old and is being treated for Lymphoma.  His total treatment will take 5 years to complete.  WOW.

We met with Bryan Fletcher.  He is a cancer survivor and an Olympic athlete.  He was diagnosed at age 4 with ALL, the same kind of leukemia that Charlotte has.  He relapsed around age 8, and underwent a then experimental treatment.  The treatment was ultimately successful, but he did suffer a lot of trials from the treatment – he mentioned suffering a stroke.  He started ski jumping while undergoing chemo, and said skiing was very motivational to him.  He had to travel to Denver from his hometown in Colorado and would have to stay for a week or two at a time. He remembers thinking, "I will do whatever the doctors told me to do, exactly how they tell me to do it because I just wanted to go home sooner so I could go ski."

Bryan wants to have Charly and Ashton each draw a picture that he can place on his ski helmet.  He will wear the helmet to raise awareness of leukemia and hopefully motivate people to donate to the cause.  After the Olympics, he will donate the helmet to LLS to auction off.  I’m not sure if he will be wearing the helmet during the actual Olympic events, but regardless, it’s pretty cool.

Charly was hilarious during the meeting.  Every time she was asked a question, she’d turn her eyes to me and expect me to answer for her.  I would just repeat the question to her and try to get her to answer.  She finally opened up a little bit at the end of the meeting when I shared that she loves Transformers and will watch them with her dad.  Bryan asked her which Transformer was her favorite.  She told him Bumblebee.  As we walked to the car, she grumped that Bumblebee wasn’t her favorite and she should have said Grimlock, but she didn’t think they’d know who Grimlock was.

I did share with Bryan that Charlotte was concerned about the drawing, that the concept was a little abstract.  Bryan would like the kids to draw what it feels like to battle cancer.  When I told Charlotte this at home before the meeting, Charlotte sighed in disgust.   “How do you draw that?  I’m just like everyone else…except I have a button” (that’s what she calls her port).    I love that she considers herself like everyone else, and that battling cancer is no big deal.

Girl of the Year

Sitting poolside during Charly's swim lessons today, I received a call.  It was Susan from the Leukemia Lymphoma Society (LLS).  She explained she was calling about an important fundraiser that the LLS holds annually called Man and Woman of the Year.  Last year, the local candidates raised $220,000.  

Not know where this call was going, I took a mental step back.  We are feeling pretty confident about our modest $1000 team goal for Light the Night.  There is no way I have the contacts to raise $10,000, let alone $220,000!  I “hmmm-ed” an interested sound and let her continue.

“Last week,” Susan continued, “our Girl of the Year called and she had to go into the doctor and so we delayed our first appointments for the Man of the Year/Woman of the Year campaign for a week until our Girl of the Year could hear back from her doctors.  She just heard back from her doctors, and her cancer has relapsed.  She has been re-admitted to the hospital and is going to need a bone marrow transplant.  She still wants to be Girl of the Year, but we told her she is going to need to save her strength for her upcoming fight.  I know this is last minute, but we were thinking Charlotte would be a great Girl of the Year for next year.  The events start in February 2014, but we are preparing for it now ...”

As Susan explained, Charlotte as "Girl of Year" is the person that the local Man of the Year contestants are fundraising in honor of.  She offers a personal face to motivate fundraisers.  Her responsibilities would be to attend a few parties, draw some pictures for thank you letters for the fundraisers, and we share her story at the fundraising kick-off.  

I told Susan I would need to talk to Charly and Sean first, mostly Charly.  She is sometimes hesitant to share her story with others.  However, when the lady in charge of the school fundraiser program asked Charly if she could put Charly's picture on the school “Pennies for Patients” fundraising posters, Charly smiled and nodded and said “SURE!”  When she was asked if she would be willing to come up during a school assembly if they came to her school, she said “Okay!”.

This original “Girl of the Year” is undergoing my personal fear for Charlotte.  Relapse.  Charly isn't home free until she has been off chemo for several years.  On top of that, in the 2-inch binder they gave us about cancer treatment when Charlotte was diagnosed, it cited the following statistics “1 in 800 adults develop a 2nd cancer within 8 to 10 years after treatment for their original cancer.  The 2nd cancer is a result of the chemotherapy used to kill the primary cancer. The risk of developing a 2nd cancer for children is not yet known, but it may be as high as 1 in 50 or as low as the adult risk as 1 in 800.” Thinking about this unknown girl makes my stomach knot.

Charlotte and I spoke in the car driving home from swim lessons.  Charlotte first said NO!  I don't want everybody to know about me.  When I asked about her saying yes to her photo being used for the “Pennies for Patients” fundraiser for local schools, she said that was different, it was just school and not "the public".  That made me smile.   I told her to wait for her final answer until we read the email Susan was sending me with the details of what was expected of her.

"Mom" Charly asked, "How does showing my picture make money for cancer?"

I explained that her picture motivates people to donate.  They know little kids are receiving help from the money they are donating and are successfully combating cancer.  They can see how it saves lives like hers.

Then she asked about how the virus kills cancer.  It’s times like this I think how smart she is.  Charly was talking about the video they showed at the fundraiser last week, where the LLS showed research they are funding.  The video showed a little girl, bald with a feeding tube up her nose.  The doctor in charge of the research relating that the child knew she was dying and was resolved and calm about it. The parents were willing to try anything to save her, so they signed her up for this study.  With the study, they injected the girl with genetically modified AIDS virus, programmed to attack tumors.  The little girl became very sick.  It came to the point where the doctors were sure she wouldn’t make it through the night.  Then her fever broke and she started to improve.  Tests were showing that the virus was killing the cancer.  LLS has committed to raise millions of dollars to support further research using this technology to combat cancer.  The final minute was of the little girl, smiling with her hair growing back, saying she has been improving constantly and everyone is anticipating a positive outcome. It was a powerful video - to watch, click this link:  http://focusforwardfilms.com/films/72/

We talked over the video, and I explained that the fundraiser campaign was important to LLS to help raise money for research on cures like the one we saw.  I told Charly that Susan said it raised $220,000 last year in our region.  “Mom!” she exclaimed, “I better do it, then we could make our fundraising goal!”  I double-checked that she knew the money wasn’t coming to us but the LLS, and it would be separate from the Light the Night campaign.  You could almost hear the eye-roll in her voice, “Mom, I KNOW, you told me that.”  I told her again to wait until we got home and read the email from Susan about what it would entail.

According to the email, it’s attending 5 parties and drawing some pictures.  Having her bio and picture used.  We may be invited to the individual fundraising events by the campaign participants, but we are not obligated to attend.  After some reading this to Charly, she still agreed.    Sean was okay with it, but asked if we should let the hospital know, because maybe they’d give her better medicine.  (insert my eye roll here)

Here’s a description of the Man/Woman of the Year program I found online, if you are interested, it also shows the role of “Boy of the Year” and “Girl of the Year”.   It is my understanding that the campaign is broken up into regions.  Our region includes NM, UT, and NV.   http://www.youtube.com/watch?v=U4Ctbyp2lWY

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.