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.

Half-way through Interim Maintenance II

Charly and I went to chemo early Monday morning.  Since she was going to have a lumbar puncture, which means she cannot eat until they are done, I scheduled it to be the first appointment of the morning.  Combined with the Daylight Savings time change, the 8am appointment was a little early.  We still got there on time, bright-eyed and bushy-tailed.

Charly's oncologist asked for her to walk down the hallway for him without her boots on, so he could see if the Vincristin had affected her feet.  Some kids experience a side effect from the chemo that makes them walk funny.  Charlotte did NOT want to walk out of the patient operatory down the hallway.  We cajoled, begged, and offered to hold her hand, or to model walk with her.  The input nurse that weighs Charlotte even joined in.  Charlotte backed herself against the sink and refused to leave.  "I'll walk in here" she offered, but the room is barely 12 feet long, nowhere near long enough for the doctor to evaluate her gait. Finally, a nurse very familiar with Charlotte's love of crafts, suggested she walk to see if there was  a new craft packet at the front table.  Charlotte informed her she already checked the table, and had taken the last packet.  The nurse suggested there might have been more put out and that Charlotte should go see.  Charlotte walked to the table, saw there were NO PACKETS, and stomped back to the operatory.  She wrapped her arms around me and began to cry silently.  Which led the odd combination of feeling like the meanest person ever and wanting to laugh at the same time.  The oncologist declared her walk perfect and gave her a pat on the back.  I could tell me felt the same way - wanting to laugh and feeling like a trickster.

Charlotte quickly rebounded when I suggested she share a joke with the medical crew  - What do you have when two cats fight?  A CATastrophe.  

We gathered our stuff up and crossed the hall for the LP.  After the lumbar puncture, Charlotte received some crackers and cheese slices while she received another increased dose of methotrexate and vincristine.

Her counts were excellent (which is why they increased her chemo again).  Mom mentioned that Heather and Elisa were thinking to take their kids to the zoo on Friday if the weather was good.  She asked me if Charly could go too.  Sean said he thought she was supposed to stay away from animals.  I told him the only notice I received was to beware the swine flu at the Utah State Park.  I double-checked with Charly's oncologist, and he said "take her to the zoo and have fun!"  On the way home, I knew I had to go get some stuff at Costco.  I mentioned to Charly that I'd drop her home before I went. "Oh PLEASE TAKE ME WITH YOU!"  I figured if the zoo was okay, then I could take her to Costco at 11:30 on a Monday morning. - of course, neurotic cancer mom reared her head and told Charlotte - no food samples and don't touch anything and touch your mouth or face after.  When we get home, you have to promise to wash your hands right when we walk in!  (Let's face it, cancer warps you.  Don't get me started on the new thoughts about how germ infested the sacrament trays probably are.  I try not to dwell on it too much, because it would make you afraid to leave the house.)  Charlotte enjoyed the 30-minute Costco run beyond reason, and declared the day to be THE BEST DAY EVER!  I admit, having my littlest helper with me again made it feel like it was the best day ever too.

We are on the last 3 treatments before Maintenance.  If all goes according to schedule, that means she's on Maintenance in another 30 days.  She will still get monthly chemo through her IV with quarterly lumbar punctures, and it will be almost another 18 months before they take the central line out of her, but when she rebounds from this round of chemo, we'll start taking her to church again, she can start back in school, maybe in time for all the fun stuff at the end of her first grade year, definitely for the start of 2nd grade.  I confirmed she is good for swimming lessons this summer.  I'm ready to get things moving back to as normal as we can manage.  We will definitely be seeing the ER again whenever she catches a bug, but if it is like our visit the Friday before last, I can manage that.