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.

Charlotte at School

People keep asking how Charlotte is doing at school.  We have been so lucky, she hasn't caught any colds, and has enjoyed it immensely.  She tells me every once in a while that she is asked, "Are you a boy or a girl?"   I look at her to see if she is hurt by the question and ask "How does that make you feel?  Does that bother you?", and she just smiles and says no.   I think she finds it secretly hilarious.  She told me that after one girl (who was 3rd or maybe 4th or maybe 6th grade) asked her that question at lunch yesterday, she told the boy she was sitting with that it was just the cancer that made her hair be short.   Charly says he told her that the other girl probably didn't understand, because not a lot of kids get cancer, just old people do.

Her classmates have been FaceTiming with her twice weekly since before Christmas, so they were familiar with how she looked before she came to school.  They also had a class discussion at the beginning of the year about the missing student who had cancer.  The teacher read a book about the Monkey in My Chair program, and they have been passing the monkey around for the various class activities.  When Charlotte's first day of school came a month ago, the class was so funny.  I arrived 10 minutes early, and Mrs. Smith began walking Charlotte through the morning routine - bag goes here, lunch goes here, go up to the front of the room and answer the question of the day.  Sit at your desk and start the writing assignment for the day.  Near the end of her run through, students started to come into the room.  Excited whispers began as one student noticed Charlotte and turned around to tell the child behind her, "Charlotte is here!"  Then I heard it spreading to outside the classroom in the hall.  "Charlotte is here!  Charlotte is here at school!"  

Everyone in her class, and to a lesser extent, the rest of the school knows who she is.  She tells me of kids that ask her to play with them at recess.  Of kids who want to do centers with her.  Charlotte tells me she is famous.  I'm so happy she is doing so well.  It was my hope that if she started this year, she would have an easier transition, having classmates who were aware of her situation.  

No News Is Good News, But Mom Doesn't Like No News

In speaking with the family, my mother chided me that I haven't been keeping up with the blog; therefore, she doesn't get to hear the small updates on FaceBook that have been posted.

Honestly, I'm grateful to say that nothing major has been happening with Charlotte.  Thus the lack of news.
Charlotte has now attended an entire month of school, and has loved every minute of it.  I can tell she is a little exhausted by the end of the day, because she can get a little snappy with me.  Usually she is a pretty even-tempered, happy girl.  She has been determined to get as much fun and play time as she can.  I remarked to Sean that we need to be better about getting sunscreen on her... she's started to turn a lovely honey color from being out in the sun during recess.  Naomi's dermatologist warned us that as a cancer survivor, she would be more susceptible to skin cancer.  I can't help but mentally compare her current radiant color with her pale skin last August.  It is a testament to her good health.  But that doesn't mean I'm going to avoid the sunscreen.
Charlotte has loved being back in school.  She was thrilled to report that 1st grade has THREE recesses.  Another good thing school has is LUNCH!   She gets to decide if she wants to pack a lunch from home, or eat a hot lunch from school.  Apparently, the school makes a pretty awesome soft taco.  It warranted a 15-minute description of it's deliciousness after I returned from work that day.
Charly's teacher says she is the BEST.  She has been passing her tests with flying colors.   Now that her afternoons are free to play with friends instead of sit at the kitchen table with her teacher, she has been happy to complete her homework.
Charlotte has also told me that she is famous.  Everyone knows who Charlotte is.  Everybody wants to be my friend.  Indeed, I saw how excited her class was when I brought her in for her first day.  The teacher was running through the class routine (backpack goes here, homework goes here, get out your notebook and begin working on the problems listed here).  The class started coming in, and you could hear loud whispers that turned into excited squeals out in the hallway, "Charlotte is here!  Charlotte is here at school!"
It's been great for her to be at school.  The only thing I have not been good at is trying to move her bedtime up to 8pm, to accommodate her being more tired than usual.  Between making sure she has a nightly shower, and leaving an hour of no eating before chemo, it always seems to be 9pm by the time Sean or I are reading her bedtime story.  It's a work-in-progress.
Sean took Charly in yesterday for her now monthly chemo session.  He said there was nothing to report.  Charly said everybody liked her hair, and we have another appointment in 4 weeks.  That's the news for now.

Maintenance

Charlotte and I went to PCMC for a lumbar puncture and chemo. Today marks the start of MAINTENANCE! This means she only goes in monthly for IV chemo visits and lumbar punctures will only be every three months. The bulk of her chemo will be done by pill at home. We are looking forward to being done with chemo in November 2014. Yes, that's not a typo, it will be 2014 before she's done. 

I took off work to bring Charlotte in because I had questions for the doctor. It's impossible to ask multiple questions over the phone because it gets routed through the receptionist to the nurse, who sometimes has to go to the doctor. Then, when the nurse calls me back, I sometimes have a new follow-up question, which means another delay. I wanted to be sure I had a discussion with her doctor and get my questions cleared up. I was told that when Charlotte was on maintenance, she could go to school. I wanted to be sure she was cleared to go, and when precisely that would be - a few days more? another couple weeks? Also, the Rx for seizure meds to spray up her nose if Charlotte were to have another seizure expired after 6 months. I wanted to know if we still needed to carry the medication around with us, and if so, for how long? Dr. Maese, her resident, felt we were fine NOT refilling the Rx. He said he would consult with neuro, but he was certain that the seizure was from the medication, which Charlotte has since received without problem. We can stop carrying it about.

Then Dr. Maese pulled out the Rx to show me everything Charly will be taking. It's enough to make my head spin. Because they want to be very accurate with their measurements, her pill schedule is hilarious. As always, she is to continue taking an antibiotic on Mondays and Tuesdays twice a day. They have her back on a steroid for the first 5 days of every month. In the morning she is to take 2 pills from one bottle, and 1 from another. In the evening, she is to take 1 pill from each bottle. Then she is to take an oral chemo, Mercaptopurine, every day before bed. Monday thru Saturday she takes 1.5 pills. On Sunday, she takes 1 pill. She should not eat 1 hour before and 1 hour after she takes Mercaptopurine. Finally, every THURSDAY she is to take another chemo, Methotrexate, along with her Mercaptopurine, EXCEPT she's not to take it once a month on the Thursday she goes into the clinic for IV Chemo. Also, we are to give her an antacid the 5 days she's on the steroids, because it causes stomach issues.

Okay, if you've got that down, I'm impressed. Thankfully, they sent home a paper calendar with all this written down. They tell me after one cycle we'll be pros at it.

So, Charlotte is going to go back to school Monday. Hooray! We are going to work with the teacher about trying to keep her away from the snifflers and coughers. They have hand sanitizers ready to go. I strongly believe she will benefit socially from being back with her peers. She has continued to amaze me with how little the whole chemo has affected her. Her teacher has also commented about how energetic Charly has been when compared to the little girl she taught last year. Tuesday is her class field trip to the Zoo, so I thought I'd get the day off and take her separately from the group. That way if she's tired, we can leave early.

Naomi thinks we should have a party, and I think I agree. I know we still have a ways to go, but I'm told it's all downhill from here.

Why the Hemotology/Oncology Clinic is a fun place

We've been visiting the Hemotology/Oncology Clinic (also known as the Hem-Onc clinic) for about 9 months now.  My first visit was a quick walk-through tour offered by a nurse while Charlotte was working on crafts in her hospital room a couple days after her diagnosis.  "This" she said as we walked through the small clinic, "is where you will come about once a week to receive treatment.  Here's the check-in area, and here is where the patients receive chemo."  At that time, all I could see was a bald ten-year old with an IV hooked up to his IV, sleeping on a reclining chair with his parent next to him.  A mother trailed after her toddling 2 year old with an IV stand, trying to keep her from tripping on the cords.  A tiny infant in a car seat sat wailing with an IV stand next to her car seat.  I remember taking my fingernail and digging it into the underside of my arm in an attempt to not start bawling.  These poor babies!  My poor baby!

We have since found that Hem-Onc is a fun place to be.  When you walk in, there is a small waiting area that has a table of pre-packaged crafts.  Charlotte usually bee-lines to the craft table to choose a project the minute we walk in the door.  Last week was all the pieces to put together a paper bag cow puppet.  The Ziploc bag included all the materials, a glue stick, and detailed instructions.  I imagine that church groups or families get together and put these together and donate them to the hospital.  There is also a wooden “hat tree” in the waiting area.  It is covered with home-made and other donated hats.  There is a sign that tells patrons they are welcome to take the hats, but please do not try them on and put them back on the tree.  Always, we are germ-conscience.  Charlotte loves to go pick out a hat.  She has been instructed not to take more than one.  There are some talented people out there.  I look at the hat tree and think, I really should learn how to make a hat.  I could do that during sacrament meeting.  It would be a good way to stay awake and listen at the same time!

By the time Charlotte has chosen her craft packet, we are called over by the lady who weighs and measures Charly.  She puts her medical bracelet on her and takes her blood pressure as well.  We are then instructed to go to a private patient room.  That’s where we wait to visit with the doctors.  The nurse comes in to “access” Charly.  That means they insert the IV needle into her port.  If she has a LP (lumbar puncture) that day, they have her lie down and the put a numbing cream, Emla, on her spine and cover it with a Tegaderm bandage.  The cream takes about a ½ hour before it’s effective, we always put some on her port and cover it with Press and Seal (thank you Glad for such an awesome product!) before we drive to the hospital.  Even though Charly will be sedated for her lumbar puncture, the staff do everything to make sure she won’t suffer needlessly.

After the nurse, the child life specialist usually pops in to say hello.  She asks Charly if there is anything she’d like for today, she will tell Charlotte of any crafts they are working on in the back area of the clinic, where you receive transfusions.  Sometimes, there has been need to offer education to Charlotte at her level of understanding.  The child life specialist has brought in books with magnified pictures of blood cells, a kit with the medical tools Charly will see in the office.  They have been essential to help explain many difficult concepts. 

The doctors usually come next, sometimes together and sometimes separately.  Every once in a while, there is a medical student who comes in to take a health history or observe the doctors.  They look so young.

The doctors usually spend about 10-15 minutes in the room, unless we have questions.  They examine Charlotte, ask how she is doing, run through the next week/ month’s treatment plan.  For the most part, we see the same doctors, but sometimes they aren’t on the schedule, and we see different doctors.  I personally feel we are assigned to the best resident and attending.  They both have a great sense of humor, teasing and laughing often.

After the doctors are done with us, we go to the infusion area for chemo.  We choose a couple reclining chairs to occupy and settle in.  There is a freezer full of Otter pops, a fridge full of sodas, milks, water, gaterade, and juice boxes.  Another fridge has yogurt, individually wrapped cheese slices, and other goodies.  She can request crackers, chips and other snacks.  Charly can get a personal TV wheeled to in front of her chair, where she can choose to watch a movie or play a video game.  They have large DVD binders filled with movies and games.  Charlotte has only requested the TV once when she has been with me.  For Charly, it’s all about the craft table.  There reside markers, glue, glitter, and materials for the craft of the day.  For Halloween she made a giant spider from a Styrofoam bowl decorated with tissue paper and pipecleaners.  For Christmas, she painted a wooden donkey.  Often, there is a college age volunteer helping to assist patients as they work.  Yesterday was very disappointing because we were so quick with our treatment, there was no time for another craft.  “Can we stay a little longer to see what they have to do today?”  Charly asked.

You would think with the amount of patients the staff sees, one little girl would be hard to remember.  But from the front desk receptionist to the nurses and the doctors, they all know how much Charlotte loves those crafts.  They all smile and ask her what she’s going to work on today.  I see them also remember that this toddler enjoys the Dora kitchen and that teenager would prefer a TV.  There are some amazing people working there.

When I visit the clinic with Charlotte, I’ve never had to repeat the trick of digging my fingernail into the underside of my arm in order to prevent myself from crying.  It’s been due to a combination of the amazing people that work there and the people we don’t see who donate their time and resources to offer movies and crafts and games that make the Hem/Onc clinic a fun place for cancer patients.