Wednesday, June 24, 2015

Swimming Lessons

To me, summertime brings back memories of my mother and the Fort Myer pool in Virginia.  Mom would load up the family car with us little Himles and the burnt-orange Coleman cooler, and we would head to the pool.  The day started with our swim lessons in the lap pool.  After lessons, we migrated to the figure-8 shaped pool where we swam, played Marco Polo, dived for objects thrown under water, jumped off the diving boards, and every couple hours, endured the never-ending lifeguard break.  Waiting for the all-clear to return to the water again was unbearable.  By the time we could go back in, our suits had dried and you had to experience the cold shock of entering the water all over again. 

My favorite thing to do was to see how far I could swim without coming up for air – swimming so low, I would often scrape my chin on the pool floor.  My second favorite thing was to jump off the high dive.  I say “jump” because to this day, I have never mastered diving. Belly flopping - yes, diving - not so much.  Not that my disability stopped me from climbing the ladder and taking the plunge.  I would jump off and do some “trick” moves like the cheerleader toe-touch, the cannon ball, and other awesome wedgie-inducing feats.  By the end of the summer, the midriff of my swimsuit would be threadbare from dragging myself out of the pool, and my sun-kissed skin would show the lily white outline of my suit for months afterwards.  Mom stayed in the shallows and by the poolside with the youngest Himle.  She was the referee for sibling arguments, the chair and towel guardian, Madam Sunscreen Applier and Coleman cooler barista – supplying sandwiches, snacks and half-frozen Hawaiian Punch juice boxes served at perfect slush consistency.     

We were only stationed in Virginia for my 3-5th grade years.  It was probably only 2-3 weeks out of every summer that mom packed us up every day for swim lessons. Given how long we lived there, it would have been only 2 or 3 summers this happened.  These aren’t the details I remember.   I remember having to tread water for 15 minutes and then having to swim the length of the lap pool and back.  Accomplishing that feat earned me a sticker on my swim pass.  That sticker meant I could enter the pool without an adult present.  Those days at the pool are the memories that shine, like bright pennies whenever I think of summer.  They would never have occurred without my mother.

Since Naomi’s first grade year, I have scheduled at least one block of swim lessons every summer, sometimes two.  Naomi started refusing to go to the pool a couple years ago...teenage anxiety of being seen in her swimsuit.  Still, I keep taking Charlotte.  We go to the American Fork pool – because they have afternoon lessons, which fit perfectly with my work schedule.  Some days, we are only there for lessons, but I try to make sure that most days we stay longer.  I remember the first year of Mom & Me classes with Charlotte.  She wouldn’t let us participate in class.  She wanted to be at the other pool, where the slides and splash fountains are. After the second day, I gave up trying to go to the lesson and we just played in the other pool for the entire 2 weeks. Charly has gone to American Fork pool every year of her life, chemotherapy didn’t stop her.  She is now experienced enough at swimming that she can be monitored poolside.  My current role is chair and towel guardian, Madame Sunscreen Applier, and snackbag barista.  Alas, no burnt orange cooler for me.  It’s a great gig, especially if you have a book.


It’s not relaxing to climb into a swimsuit after a long day at work, chase kids to and from the pool, sit poolside in the hot sun, followed by hurriedly slapping together dinner while arguing that YES, baths are necessary after swimming because pool water does NOT count as a bath.  Sometimes, when exhausted children are whining and difficult, the whole ordeal doesn’t feel all that rewarding.  But I hope that my efforts will one day become penny-bright memories that they also cherish.  That is my tribute to my mother.  I think these poolside memories would never have occurred without her.

Tuesday, June 16, 2015

Make A Wish

I realize it’s been a while since I last made an entry.  I wonder if it’s in my mind, or if it’s another witness to how much spiritual help I received in the past few years.  It seems that even though I have less stress and more time, I’m less productive than I was during the past 2 years.

I had a previous entry on Make A Wish and the complicated feelings I had at the beginning of Charlotte’s cancer diagnosis.  As we started her cancer journey, I could have cared less that Charly was eligible for a wish.  It didn’t matter, because Charly wasn’t dying.  Those negative & irrational feelings mellowed and changed, once I knew Charlotte’s treatment was going well.  However, Sean, Charlotte and I were in no hurry to pursue Charlotte’s wish.  We were pretty busy with all the medical appointments (both Sean’s and Charly’s), and Charlotte really never wished for anything we couldn’t easily provide ourselves.  But there was one person who kept chanting, “Wish for Disney” whenever the subject came up.  We’ll just say this person’s name rhymed with “My homey”.

In all the literature and counseling, the support materials caution making time for the siblings of cancer kids.  Sean and I tried to have one-on-one time with Naomi every other weekend.  I took Naomi with me on a business trip to Hawaii.  We had a single day of play on Oahu and she only had to suffer through a dental meeting the next day and a long flight home as a price for the trip.  If you ask me, I would say we were pretty good at giving her time and attention.  She would probably disagree – especially when she is having a pity party.  

Knowing Naomi's desire to go to Disney World, I made arrangements in spring 2013 for us girls to go to Orlando for 3 days.  We spent a half-day at Magic Kingdom and a day at Epcot, and some time at the hotel pool – Charly’s favorite place.  While preparing for the trip, Charlotte and I were checking out websites of suggested activities to do while in Orlando. We stumbled onto the website for Discovery Cove, a SeaWorld property.  Charlotte saw that she could swim with dolphins, and she excitedly asked if we could go.  I told her we couldn’t.  I hadn’t rented a car, and most of our trip time was going to be spent at the Disney parks.  We wouldn’t be able to do that on this trip.  That’s when she looked me in the eye and told me, “I know what I want to use my wish for!  I want to swim with dolphins”.

This March, when we told people we were going on Charlotte's Make A Wish trip, many people were confused and asked, wasn’t Charlotte’s treatment over with?  Yes, she finished chemo in October 2013.  Her wish came around so late because of many reasons.  About 3 months went by where we mentioned to the Child Life Specialist at Primary’s that Charlotte was ready to get in touch with Make A Wish.  Treatment days in the oncology clinic are so long, and the staff are so busy, I never felt like I wanted to chase down the Child Life Specialist and remind her she was going to bring me paperwork four hours ago. I see the kids needing help being entertained while they received chemo, and I felt they were working on more important things. 

When the paperwork was finally submitted and we had our first meeting with MAW, it was September 2013.  

We gave the coordinators 4 date options that would work around the girls’ school schedule and my work schedule.  Given the nature of the wish, I was extremely grateful it wasn’t fulfilled until Spring of the following year.  It was March, and on the morning of the dolphin swim was 55 degrees!  I can only imagine how cold it would have been in December.

Start of the Trip

To kick off the trip, Charlotte had a party at the Make A Wish Utah building.   We invited friends and family to enjoy cake, take a tour of the facility, and watch Charlotte’s star-raising ceremony.  The kids’ favorite part seemed to be riding the elevator up and down the two-story building, much to the adults’ chagrin.


The very next day, we flew to Orlando.  MAW arranged for a rental car and hotel at a Fairfield Inn by SeaWorld.  We arrived about 5pm at the hotel and the girls felt starved, as we flew over the lunch hour.  It makes me smile to hear them complain about how tired and hungry they feel, and how we only have time for dinner before going to bed, because I get to experience a trip like that pretty often.   We were planning on going to bed so early because the next day was the dolphin swim, and Charlotte was supposed to be there at 7:30 in the morning.  With the two-hour time change AND the Daylight Savings Time change on the same day, it would be like checking in at 4:30am back home.
Sunday morning, we rolled out of bed and got ourselves ready for her adventure.  It was quite chilly, but the forecast predicted it would get up into the 70s by noon.  The park, Discovery Cove, was beautiful.  The parking lot was small – I’ve seen larger Home Depot parking lots.  The lobby was gorgeous.  Beautiful sculptures and artwork of dolphins surrounded the room, and hung from the ceiling.  Each family was greeted and brought to an individual check-in agent.  They created photo ID badges for each individual in the party, and reviewed the schedule for the day.  Sean and Charlotte were going to do the Trainer for the Day program.  Naomi and I were to explore on our own. 

While waiting for the trainers to pick up Charly and Sean, a greeter came and gave Charlotte a stuffed dolphin.  It couldn’t have come at a more perfect time.  Charly was upset that she hadn’t eaten breakfast yet (it was included as part of the tour), and she was getting hangry (hungry-angry).  Charly loves her stuffies, and the dolphin put stars in her eyes.  Even better, she was told that when she figured out what she was going to name it, she could get a photo ID badge made up with its name on it.  The next few minutes were spent trying to figure out a name.

Sean and Charly were then collected by the trainers and Naomi and I were pointed the way to breakfast.  The park is all-inclusive – breakfast, lunch, and all the snacks and drinks you’d like.  They had a cafeteria building and you could load up as much as you’d like on your tray.  The real treat was being able to just go up to the snack bar and grab a warm cookie or pretzel, or helping yourself to a slushie.  Charlotte’s biggest thrill was to ask for an ice cream bar and the response was “Strawberry or Chocolate?”  

While Charlotte and Sean went to the back areas and experienced all the glories of being an animal trainer, Naomi and I were escorted to our family cabana overlooking the dolphin pool.  There was a basket full of snacks and a fridge full of sodas.  Our cabana boy asked what beers or other alcoholic drinks we liked to have stocked in the fridge – like I said, all-inclusive.  We explained we weren’t drinkers, and he led us to the wetsuit areas to get our wetsuits and a gift bag with complimentary snorkels and masks.  The park requires all swimmers to wear wetsuits or their neoprene vests while in the water.  There are 3 major swim areas.  The first is a warm-water lazy river that goes by animal exhibits.  A glass wall will separate you from the swimming otters, and it’s almost like swimming with them.  The river also winds into some of the park aviaries.  Charlotte was thrilled/horrified when we swam through the aviary and a parrot pooped into the water. 

The second major pool area was for the dolphin experiences.  It was a tri-fingered pool and our cabana overlooked the pool, where Naomi and I watched other groups do their dolphin swims.  We were to meet up with Sean and Charlotte at 11:30, so we went exploring.  All along the pool edges, they had man-made sandy beaches and sun chairs.  Naomi and I spent an hour tanning.
The final pool area was a salt-water pool filled with rays and tropical fish.  A glass wall separated part of the pool from the shark tank, so you could swim “next to” the sharks.  Charlotte adored taking her snorkeling gear and swimming there.

Naomi and I met up with Charlotte and Sean, and together we were able to be towed into shore by a dolphin by holding onto the dorsal fin.  We also were able to pet the dolphin and listen to those amazing clicks, squeals, and raspberries that they make.  No cameras were allowed, all pictures were taken by the professional camera crew.  I absolutely wasn’t going to pass buying those up.
The trainers were really cool. They started giving me a heads-up where I could catch up with Sean and Charlotte so I could get some photos.  We didn’t catch them to eat lunch together, but I was able to shoot some photos of them feeding the sharks, and the extra bonus dolphin ride that they added at the end of their day.  Sean and Charlotte were released from trainer duty at 1pm and those lovely trainers took Naomi and me to the back areas to show us the new baby dolphin – only 3 weeks old.  They spent almost an hour answering our questions and I think Naomi is seriously considering becoming a dolphin trainer.

Sean was pooped by the time we reunited, so he hung out at the hammock in our cabana, and Charlotte practically dragged me to get to the lazy river.  The park closed at 5, and honestly, it was too short a day.  I definitely would love to return again.  I cannot describe Charlotte’s incandescent joy that just BEAMED from her face the entire day.

The next day, we spent at Sea World. When you buy a Discovery Cove ticket, your entrance to Sea World and it’s water park, Aquatica, is included for the next 14 days.  Charlotte had souvenir money burning a hole in her pocket.  Every stuffed animal she saw, she needed to bring home.  I kept trying to delay her purchases until later in the day – so I wouldn’t be carrying a backpack full of stuffies.  MISTAKE!  There was a little brown seal that I convinced her to wait to buy, certain we would see another sometime in the day.  By the time we returned to the kiosk, it was closed – 20 minutes before the park closed.  Charlotte’s face was crushed – tears and all.  We hit every gift shop on our route out of the park.  The final shop, I told the shop clerk my dilemma, and he told me where to find the one shop that carried every stuffed animal sold in the park.  Charlotte and I took off running.  With minutes to spare, we found the store and the coveted little brown seal. 

Wednesday was Disney day.  We started out in Epcot, but Charly was ready to go back to the hotel by noon.  A bribe of another stuffed animal – an elephant this time – we were able to stretch another 4 hours out of her at the Animal Kingdom park.  I also demanded she ride in a stroller, all that walking was getting to be too much for her.  After we returned to the hotel, I told Sean he either would take Naomi back to Magic Kingdom until its midnight close time, or I would.  Make A Wish gave us a special genie pass that allowed us to skip straight into the fastpass lane – no waiting.  The current handicap policies by Disney isn’t that nice!  Sean ended up taking Naomi back to Magic Kingdom. Charly and I spent the evening hours at the hotel pool.  When we returned to the room after, we both passed out.  These parks are a lot of exercise!    

After 3 days of parks, Charly was pretty worn out.  I won’t lie.  Pushing her around in a stroller the day before seriously left me sore.  We slept in.  Charlotte and I got up before Naomi and Sean, so we had breakfast and went to the pool.  After a couple hours, we all went and enjoyed a movie – SpongeBob SquarePants.  I fell asleep during the movie.  Definitely a first.  Naomi then got her wish – she perused Ron Jon’s Surf Shop, then the Vans and Quicksilver stores at the mall.  We celebrated the final night in Florida with an excellent dinner at the Bonefish Grill.   It’s a treat for Sean, because I hate the smell of fish, and don’t cook it at home.

I am so grateful for the opportunity to enjoy Charlotte’s wish with her.  It was truly a celebration of the milestone of her chemo completion.  

Monday, October 20, 2014

No More Port

Today was Charlotte's surgery to have her port removed.  Primary's had us scheduled to have surgery at 11:30am, and wanted us to check in at 10 am.  That meant we started our drive up at 9am.  By the time we finished and got home, it was almost 5pm.  Long day, most of it waiting.  Waiting to move from the check-in room to the weigh-in room.  From the weigh-in room, to a prep operatory (where I had to wipe Charlotte's entire body off with Chlorhexidine wipes, an interesting tidbit for those in my audience who have interest in infection control).  From there, Charlotte and I waited to be taken to another pre-op room by the nurse practitioner, who looked concerned about Charlotte's reappearing rash.  I assured her we have been battling it since January, and had hopes that it might clear eventually, now that she's done with chemo.

The final pre-op room only had a few patients in it.  We waited there, watching cartoons, until her anesthesiologist came in to chat.  He promised to give her lemon-raspberry scented laughing gas, and when she was totally out, she would receive her IV.  He said he'd take Charlotte momentarily, but warned me not to let him take her until we had spoken with the general surgeon.  The general surgeon finally came in about noon.  He told me the surgery would take 30 minutes and what follow-up care would be needed.  He said he would make an incision where her scar was, and since the scar was pretty large, he would try to remove some of the scar tissue and use glue to seal the wound after.

A few moments later, the anesthesiologist came and gathered Charlotte and me.  He led us down a hallway and to a set of doors.  "Mom," he said, "this is where we say goodbye to you."  He gave me directions to the parents' waiting area, and walked off with Charlotte through a set of large double-doors.

The last time Charlotte had surgery in the same-day surgery department was 2 years ago - to put in her port, get a bone marrow sample, and her first spinal tap.  Every other spinal tap she has had since has been in the Primary Children's RTU (Rapid Treatment Unit) or conscious sedation in the surgery suite adjacent to the oncology clinic.  We only used the RTU for the first couple spinal taps.  They would let a parent stay with her until she was put under general anesthesia, then they would escort the parent out to the waiting room.  When she was placed under conscious sedation in the clinic, I never left the room at all.  Watching her leave me with the doctor made me want to cry.  She's so brave.  She just gave me a hug and waved at me as she walked away.  I wanted to hold her hand a little longer.

About 20 minutes later, the doctor came into the waiting area.  He asked me to step outside, and just leave my belongings in the waiting room.  He sat me down in the hall and told me they were having problems.  The line to her port had calcified and was resisting being removed.  The doctor said he was pulling as hard as he dared, and he didn't want to pull harder and potentially cause damage.  Her line was wound up under a vein under her clavicle.  He said he could do 2 options.  1.  Pull out as much line as he could and cut off the line at the point where he couldn't pull it out any further.  They'd seal the remaining line, and leave it in her body.  He'd close her up and take an X-ray and have us come in tomorrow to take another x-ray to see if the line had moved.  2.  He could make an incision in her clavicle and try to fish it out that way.   The surgeon wasn't wild about option 2, and neither was I.  There's a lot of muscle and nerves in a person's shoulder, and I was afraid of potential damage to her arm, not to mention another scar.  I asked the surgeon if leaving in the line would mean we would still have to bring her into the ER whenever she had a fever.  He said he wasn't sure, he'd call our oncologist to see what they had to say about it.  He also said that if he closed Charlotte up with some of the line still in, and it appeared to be moving after, we would need to bring her back in for another surgery to have cardiology go in and take it out.  They had different tools that would be more successful removing it.  However, he suspected that with how hard he was trying to pull the line out, it was going to be staying put.

I told him that I definitely thought that was the better choice, and he went back into surgery, and I went to go bite my nails and text Sean from the waiting area.

Another half hour, and the surgeon came in, smiling.  "After I went back in, I tried pulling on it some more, and I think I was able to get it all out.  We'll have them take an x-ray, and I'll talk to you in recovery once I get a chance to see the x-ray.  She's doing great."

I was so relieved.  Thankfully, the x-ray didn't show anything left behind.  I peeked at it after the tech took the image.  I don't claim to be an expert, but I could tell they were able to get everything out. I remember seeing Charlotte's port line when they took an x-ray of her chest in January when she had that hideous cough.  I remember how her port appeared in the x-ray, and how the line snaked up and around her clavicle area.  I remember being amazed at how long that line appeared, and being in awe about how somebody slowly fished that line through her tiny body.

After recovery, we headed up to the oncology clinic.  Dr. Barnett checked out Charlotte's scar, and expressed delight at how nice it looked.  Most of the kids apparently get the old-school suturing, not the crazy glue seal that Charlotte received.  Her blood levels are also looking great!  Her white blood cells and red blood cells are normal.  Her bilirubin dropped from a 4 to a 2, and her ANC is nice and robust, which is everything we want to hear.

Charlotte's doing well.  She's a little sore, so I told her she could take tomorrow off school.  We'll see how she does tomorrow.  Her oncologists originally told me she should be fine to go to school the day after, but her surgeon said she might be pretty sore.  I imagine so, with all that tugging he had to do.  She's been told no baths or swimming for the next couple weeks (showers are okay), and to not do any monkey bars or strenuous activity for a few days.

One final piece of good news - Now that the port is out, we have to go to the lab to get blood drawn a half-hour before every clinic appointment.  The oncology nurses don't draw blood in the clinic if you don't have a port.  Charly's been very unhappy about losing her port, because she did not like having a vial of blood drawn from her elbow.  Dr. Barnett told me today that they can do all the necessary blood tests with just a finger poke!  No vials of blood necessary!  I was so thrilled.  Charlotte is still leery, but I told her it would be a real quick poke and wouldn't hurt as long, and it would be a lot easier.  We go back in another month, so we'll see how she takes the finger poke then.

It was a long day, but a good day.

No More Port

Today was Charlotte's surgery to have her port removed.  Primary's had us scheduled to have surgery at 11:30am, and wanted us to check in at 10 am.  That meant we started our drive up at 9am.  By the time we finished and got home, it was almost 5pm.  Long day, most of it waiting.  Waiting to move from the check-in room to the weigh-in room.  From the weigh-in room, to a prep operatory (where I had to wipe Charlotte's entire body off with Chlorhexidine wipes, an interesting tidbit for those in my audience who have interest in infection control).  From there, Charlotte and I waited to be taken to another pre-op room by the nurse practitioner, who looked concerned about Charlotte's reappearing rash.  I assured her we have been battling it since January, and had hopes that it might clear eventually, now that she's done with chemo.

The final pre-op room only had a few patients in it.  We waited there, watching cartoons, until her anesthesiologist came in to chat.  He promised to give her lemon-raspberry scented laughing gas, and when she was totally out, she would receive her IV.  He said he'd take Charlotte momentarily, but warned me not to let him take her until we had spoken with the general surgeon.  The general surgeon finally came in about noon.  He told me the surgery would take 30 minutes and what follow-up care would be needed.  He said he would make an incision where her scar was, and since the scar was pretty large, he would try to remove some of the scar tissue and use glue to seal the wound after.

A few moments later, the anesthesiologist came and gathered Charlotte and I.  He led us down a hallway and to a set of doors.  "Mom," he said, "this is where we say goodbye to you."  He gave me directions to the parents waiting area, and walked off with Charlotte.  The last time Charlotte had surgery in the same-day surgery department was 2 years ago - to put in her port, get a bone marrow sample, and her first spinal tap.  Every other spinal tap she has had since has been in the Primary Children's RTU (Rapid Treatment Unit) or conscious sedation in the surgery suite adjacent to the oncology clinic.  We only used the RTU for the first couple spinal taps.  They would let a parent stay with her until she was put under general anesthesia, then they would escort the parent out to the waiting room.  When she was placed under conscious sedation in the clinic, I never left the room at all.  Watching her leave me with the doctor made me want to cry.  She's so brave.  She just gave me a hug and waved at me as she walked away.  I wanted to hold her hand a little longer.

About 20 minutes later, the doctor came into the waiting area.  He asked me to step outside, and just leave my belongings there.  He sat me down in the hall and told me they were having problems.  Her port had calcified and was resisting being removed.  The doctor said he was pulling as hard as he dared, and he didn't want to pull harder and potentially cause damage.  Her line was wound up under a vein under her clavicle.  He said he could do 2 options.  1.  Pull out as much line as he could and cut off the line at the point it was resisting removal.  They'd seal the line, and leave it in her body.  He'd take an xray and have us come in tomorrow to take another one to see if the line had moved.  2.  He could make an incision in her clavicle and try to fish it out that way.   The surgeon wasn't wild about option 2, and neither was I.  There's a lot of muscle and nerves, and not to mention another scar.  I asked the surgeon if leaving in the line would mean we would still have to bring her in whenever she had a fever.  He said he wasn't sure, he'd call our oncologist to see what they had to say about it.  He also said that if he closed Charlotte up with some of the line still in, and it appeared to be moving after, we would need to bring her back in to have cardiology go in and take it out.  However, he suspected that with how hard he was trying to pull it out, it was going to be staying put.

I told him that I definitely thought that was the better choice, and he went back into surgery, and I went to go bite my nails and text Sean in the waiting area.

Another half hour, and the surgeon came in, smiling.  "After I went back in, I tried pulling on it some more, and I think I was able to get it all out.  We'll have them take an xray, and I'll talk to you in recovery once I get a chance to see the xray.  She's doing great."

I was so relieved.  Thankfully, the xray didn't show anything left behind.  I peeked at it after the tech took the image, and although I'm not a radiologist, I remember seeing Charlotte's port line when they took an xray of her chest in January when she had that hideous cough.  I remember how her port appeared in the xray, and how the line snaked up and around her clavicle area.  I remember being amazed at how long that line appeared, and being in awe about how somebody slowly fished that line through her tiny body.

After recovery, we headed up to the oncology clinic.  Dr. Barnett checked out Charlotte's scar, and expressed delight at how nice it looked.  Most of the kids apparently get the old-school suturing, not the crazy glue seal that Charlotte received.  Her blood levels are also looking great!  Her white blood cells and red blood cells are normal.  Her bilirubin dropped from a 4 to a 2, and her ANC is nice and robust, which is everything we want to hear.

Charlotte's doing well.  She's a little sore, so I told her she could take tomorrow off school.  We'll see how she does tomorrow.  Her oncologists originally told me she should be fine to go to school the day after, but her surgeon said she might be pretty sore.  I imagine so, with all that tugging he had to do.  She's been told no baths or swimming for the next couple weeks (showers are okay), and to not do any monkey bars or strenuous activity for a few days.


One final piece of good news - Now that the port is out, we have to go to the Primary's lab to get blood drawn a half-hour before every clinic appointment.  The oncology nurses don't draw blood in the clinic if you don't have a port.  Charly's been very unhappy about losing her port, because she did not like having a vial of blood drawn from her elbow.  Dr. Barnett told me today that they can do all the necessary blood tests with just a finger poke!  No vials of blood necessary!  I was so thrilled.  Charlotte is still leery, but I told her it would be a real quick poke and wouldn't hurt as long, and it would be a lot easier.  We go back in another month, so we'll see how she takes the finger poke then.

It was a long day, but a good day.

Friday, October 10, 2014

The End ... of Chemo!

lt's been a real busy couple weeks, but I feel I need to sit down and make sure I get these "lasts" written for the blog.

September 25th - The last Thursday in September, was Charlotte's last IV chemo appointment.  What a long journey!  Everyone at the clinic kept asking how she was planning on celebrating and if she was having a party.  She was planning a party, but she wanted to have it on her actual Last Day of Chemo - October 4th.

We brought Naomi to the clinic.  They told us it would be fine for the final ceremony.  Then, the day before, I get a voicemail that says that NO siblings could come to the clinic - because of the enterovirus that's going around.  Every time we get an appointment reminder they remind us not to bring other children to the clinic - as there are many immunocompromised patients there.  They also have a sign on the door to the clinic that says "no siblings allowed", and if you missed that sign, they have another one, right next to the sign in sheet on the reception desk.  Which is why, Naomi has never been to the clinic.

Given that it was Charly's final chemo visit, I called to see if it might still be permissible to bring Naomi - enterovirus protocol or not.  I was glad I did, because Sandy, the receptionist, told me that should be fine to bring Naomi since it was a special occasion.

It was a busier day than usual that day.  There were quite a few kids waiting to be seen.  Naomi happily greeted one cute little bald toddler and tried to interact with her - but the little girl was too shy to say hello.

Every time one of our nurses or doctors came into the room, they exclaimed, "You've never been her before?" to Naomi.  Sean and I pointed out that that's because they specifically say to keep siblings home, we respectfully obeyed.  They looked a little sheepish, and said, "Yes, but families usually end up bringing their kids in a few times during treatment, because of scheduling conflicts".

Sean kept trying to film Charlotte and asking if she was excited to be finished, but that would just prompt scowls from Charlotte.  She doesn't like to be filmed.  Sean doesn't realize he has to be sneaky.  Which is how I get most of my shots of her smiling in the clinic.


When she finished her chemo, the nurses and child welfare workers all gathered together and began to clap and stomp - they sang "No More, No More, CHEMO, Ther-a-py!" to the tune of Queen's "We Will Rock You".  They presented her with a super soft blanket wrapped around a scrapbook kit, a My Little Pony set, and a Build-A-Bear - all the things Charlotte loves most.

She then was brought to the bell back by the infusion area.  I wish I had taken a photo of the poem inscribed on the plaque that they had Charlotte read. At the end, they had Charlotte ring the bell 3 times - to signal she was done.  Big cheers and smiles everywhere.  It was awesome.



Then we went to lunch - Charlotte was back on steroids for the final time.  It was just the first day, but her appetite was craving ribs and mashed potatoes.  By the time we were done with lunch, Naomi only had 45 minutes left of her school day.  Considering we'd been gone for the week prior on family vacation, Naomi was told by mom and dad she had to go finish the day and try to get some make-up work collected.


The following Tuesday was Charlotte's LAST dose of steroids.  It felt like they really hit her harder this time. On Sunday, I made her scrambled eggs and bacon.  She was still hungry, so she had a bowl of cereal.  An hour later, she was still hungry, so she had a warmed up helping of Chicken and Broccoli casserole before she went to church.  Then, she had an early dinner and a second, later dinner before bed.  As usual during steroid time, she passed out about 7pm.

Friday, I was traveling for work, but Charlotte had the post-steroid migraine that we always seem to see 2-3 days after she discontinues the pills.  They get so bad, she usually barfs.   Which she did, so she stayed home from school to enjoy peace and quiet.

I am so glad to see the end of steroids.

Finally, Saturday was her last dose of chemo pills!  Charlotte wants to be a scientist when she grows up, but if that doesn't work out, she would be a great party planner.  She's been making plans for her party for over a month.  Her guest list was small.  Every time I asked if she'd like to invite more kids/people, she firmly told me "NO".  She just wanted some of her best pals.  She also knew exactly what she wanted to do.

First, she drew pictures of what she called cancer cells.  Then, she taped them to our walls for the guests to shoot with Nerf guns.  Then, she gave everyone sheets of paper with the title: "If I were on steroids, I would eat...." The kids drew their favorite foods on the paper.

Next, we had pizza and Grandma's homemade breadsticks.  Charly loves (rightly so) her grandma's breadsticks, so she called in an order for the party a couple days before.  After pizza, we beat a piñata like it was cancer.  I had Sean set it up in the garage.  None of our trees outside are tall enough.  Sean wanted to set it up inside, but I wasn't about having blindfolded kids with a broomstick being that close to our flatscreen TV.

After wacking cancer into oblivion, the kids came inside for cake and ice cream.  Then they began selecting what glow stick accessories they wanted for the flashlight disco.
multi-purpose pinata.. it can be converted into a hat after beating it to smithereens
I don't exactly know the origins of flashlight discos, but for me, it came from my sister, Heather.  I remember being stressed out about BYU Winter finals, and driving up to visit Heather at her condo.  She brought out the flashlights, blasted the music, and we danced in the dark.  It's super de-stressing.  You should try it.

I introduced the concept to Charlotte during her year of at-home schooling.  It was winter, she wasn't cooperating with me on homework, because she had cabin fever and hadn't seen friends all day.  I promised her a flashlight disco if she would just finish her assignments.  She perked up and finished her homework.  My good pal and neighbor, Ashly McDaniel, let me borrow her kids past their bedtime to come over and boogie down with us.  That night is one of the days that sticks out in my mind.  I remember my cranky bald girl going to bed with a smile on her face.

When it came time for a party to celebrate the end of chemo, I knew we needed to have another one.  This time, we had a mega pack of glow sticks and confetti cannons to help make it extra festive.  It was so fun to see those kids boogie in the dark.

Boogie down!
Just want to throw the confetti one more time.

Charly's been off chemo for almost a week now, and I don't know if I'm imagining it, but I think she is looking a little less yellow.  I'm looking forward to hearing that her bilirubin drastically dropped by the next appointment.  Which, by the way, is when she gets her port taken out.

Charly is pretty attached to her port (forgive the pun), and is very concerned about losing it.  She isn't thrilled with the idea of monthly blood draws without it.  I keep reminding her that they will use "freezy spray", but Charly hates needles.  I don't blame her.

When I speak with adult cancer patients, there seems to be a different protocol. It appears pediatric oncologists want the kids to remove their ports as soon as possible after their chemo is over.  They are concerned with potential infection, and feel that the risks associated with keeping the port in the body far exceed the benefits.  I admit, I am happy to know the "fever protocol" will be over once the port has been removed.  No more running to the ER when Charlotte has a fever over 100.4.  No more waiting for blood samples and driving home past midnight after she's been given IV antibiotics.

Yes, that's a lot of "lasts" crammed into just a few short weeks.  I am amazed and humbled by the tender mercies and the blessings of the last two years, and I am so grateful to be living in these days, in this country, with access to an excellent pediatric oncology team. I am so blessed to have Charlotte in my life, she is a truly individual.  I look forward to seeing her achieve anything she sets her mind to.

Wednesday, September 3, 2014

LAST LUMBAR PUNCTURE.

Hooray for the LAST LUMBAR PUNCTURE!

Next month - the last chemo visit. They said we could get her port taken out that same day, but I thought I'd do it a couple weeks later, when the kids are out from fall break. That way, she won't accidentally get jostled at school and hurt her incision. They said it's pretty quick recovery to have the port out.
Charly will still continue for another 9 days after her September visit taking her nightly chemo pills at home, then she's done on October 4th!
Even though the chemo is done, we are still going to be visiting Primary's every month....for the next year. I'm so grateful she is so smart and hasn't had a problem keeping up from all these missed school days, because it looks like that won't be ending soon.
Then (barring any complications) we go to quarterly visits, then semi-annual visits, then annual visits. Pretty much the oncologist wants to see her for the rest of her life.  Even when she reaches adulthood, they want her getting annual check-ups.
At her visit today, her bilirubin was at a 4.7 (still high, last time was 4.1). Her ANC was 3100. Again, the dilemma. The bilirubin would have them decreasing chemo, but her ANC would have them increasing it. So.... they are leaving her be.
Sean and I are biting our nails. The high ANC makes us wonder if this means she'll get off chemo and relapse. I ask everytime. The answer is always a vague negative, because there isn't some concrete rule. I realize that nobody wants to promise that the cancer is gone forever, because they truly can't predict that. They can only rely on statistical analysis. Today, the doc says the high ANC readings usually means that the patient hasn't been taking their chemo, which is NOT the case with Charlotte. We have been on top of her pills. The doctor says he can tell ... because it shows from her high bilirubin levels. Sean mentioned to me last month that the clinic staff told him how some families go for a week or two, forgetting to give their child their cancer medication. It blows my mind. Sean and I are so anal about it. Even with the complicated pill schedule, how could they forget?
I'm so excited and nervous. I realize it's never really "over", but I am so ready for it to be over. Let this be enough to kill it and have it never return! Let her be healthy and strong! Let the countdown to the end begin! October 4 - here we come.

Thursday, July 3, 2014

Let Freedom Ring

July 3, 2014

It's been a busy week.  Tuesday we went to our annual block party, where we stayed up late and watch some magnificent aerial fireworks ... and those fountain ones too.  Wednesday, I booked tickets to see the Utah symphony at Thanksgiving Point's outdoor amphitheater.  The girls were mortified that I started tearing up at the Star-Spangled Banner.  I felt a flood of gratitude and love for our country.  The tears really started flowing when they announced the symphony would play the various military corps' songs, and asked those who have served and those family members of those who have served to stand during the rendition of their branch's song.  The Army Goes Rolling Along began, and Charly (in loud voice) asked "Why are you crying mom?" Sean proudly stood with a few others when Anchor's Aweigh played.  The girls' were less than impressed with the concert, but enjoyed the fireworks afterwards.  Thankfully they brought friends to keep them entertained.

Today was Charly's monthly chemo visit.  They are still watching her bilirubin levels closely.  A couple months ago, she got up to a 4.  It was high enough, that they decided to check her blood again half-way through the month. It dropped to a high 2.  At the monthly appointment two weeks later, she was back up to a 3.3.  Today, they told me they stop chemo if she gets up to a 5, so we waited to get her IV chemo until her bilirubin results came back. Today, she's at a 3.

Her ANC (immunity level based on her white blood cell count) was 1700, and is higher than they want.  Normally, because of these numbers they'd increase the chemo, but because of the higher bilirubin, they decided to just keep her nightly doses the same.  I'm relieved.  It was just an extra 1/2 pill every night, but the 3 months she was on a higher dose over Nov - Jan, Charly seemed to be more run down, she lost a lot of hair, and then she went neutropenic and had to be hospitalized.  I am totally fine with not increasing her chemo.

The best news of today - Dr. Barnette asked me, "So, have you been told your end date yet?"  I told him we hadn't been told an exact date, but I was figuring it would be around November.  Dr. Barnette told me he could tell me the exact date of her last chemo and left to get her file.  When he returned, he announced her last dose of  chemo would be October 4th - "That's a big 10-4 good buddy!" said our nurse when she overheard the date.

It's so exciting to hear how close "the end" is.  October 4th is a Saturday.  Dr. Maese explained that her last IV chemo visit would be 3 weeks before in September.  But we keep giving her the nightly chemo pills until October 4th.  After we discontinue chemo, we will still go to Primary's for monthly check-ups for a while.  Then they will decrease her check-ups to every other month, then 6 months, until she is down to an annual check-up.  We'll schedule her to get her port removed before the year ends.  No more rushing to the hospital when she gets a fever!  I know there are statistics that say Charly has a 2% chance of relapse, and a higher probability of developing another cancer later in her life, but I feel like we are almost at the finish line.  No more pills, no more harmful substances being pushed into my baby's body.  FREEDOM!  I am practically dancing as I type this.  Feel free to join with me!

Sunday, May 11, 2014

High Bilirubin and Skipping Steroids

Charlotte’s monthly chemo visit was last Thursday.  Sean’s time taking ObamaCare calls is over, but I had already taken the time off, so we both went with her to her visit.  After, the plan was to get lunch and a quick stop by the Salt Lake airport for a TSA interview I had scheduled.

The oncologist came in for our visit and checked Charlotte’s heart and lungs and asked how she was doing.  We talked about the horrible rash on her face…again.  It’s not like it’s hard to notice.  Dr. Barnett and I have been talking about it since before Christmas.  Dr. Barnett thinks the dermatologist may be in error in blaming it on the steroids.  The dermatologist I took Charlotte to in November said that it was classic steroid dermatitis.  He said that discontinuing use of steroids causes her to get the rash about a week after she stops steroids.  He said to use a calming lotion and said that after 2 weeks, the rash should clear.  However, since we are on steroids every month, it’s a perpetual recurring rash.  Sitting in the oncologist’s office, looking at her pink rash cheeks and forehead, the oncologist told us to skip steroids this month, to see if it helps.  Dr. Barnett assured us that skipping steroids shouldn’t affect her treatment.  Apparently, half the kids in the practice are on steroids only once every 3 months.  Dr. Barnett thinks this is where leukemia treatment is going to be going in the future.

When Charly was diagnosed, they asked us to sign Charlotte up to their “study” treatment.  They assured us it was the same medicine and treatment that have been used successfully for over 30 years, but they try different protocols to see which scenarios work best with the least amount of after affects. Sean said the insurance wouldn’t cover study treatment and refused to sign the paperwork.  Charlotte’s been basically in the “control” group, receiving the “standard of care” treatment for leukemia.   Over the past couple of years, I’ve heard a few clues regarding the treatment for the clinic’s study patients.  Here was another clue to what might have been. Apparently, half the kids in the study are receiving steroids less often than Charlotte. 

I admit, I’m thrilled to skip a month of steroids, and not too concerned about skipping them.

Usually, Charlotte’s maintenance chemo appointments have been quick – only an hour on average – but today, Charlotte’s port wouldn’t cooperate.  The nurse couldn’t draw blood from the port, which has happened twice before.  In these instances, they order TPA, a solution they put into the port, which takes at least an hour wait while it’s ordered from the pharmacist.  The nurse puts it into Charly’s port and then lets the TPA sit for 20 minutes.  Then, they check to see how the port draws and flush out the TPA.  THEN they can take a blood sample to check her counts and administer chemo.  The two times this has happened before, the TPA clears any blood clots that are in the port.  At 20 minutes, the port was still being stubborn.  They decided to let it sit another 10 minutes.  I got on the phone and cancelled my TSA interview.  Since the appointment went so long, they told us they’d call us with her blood results.  By the time we left the clinic, we’d been there for 4 hours.  We grabbed lunch and headed out to the airport.

When the nurse called the next day with Charlotte’s blood results, she told us that Charly’s bilirubin levels were high.  So was her ANC level, she was back in the 5300s….dang it!  The ANC levels would suggest an increase in her chemo.  However, the high bilirubin would apparently require stopping chemo for a while – to allow her liver to rebound from the chemo.  The final call…they are keeping her chemo at the same level, and they ordered home health to come to our house for a blood draw in 2 weeks, in hopes that her bilirubin levels will go down.


So – we are avoiding dark thoughts of liver failure and remaining calm.  I will admit to buying Tangerine and Carrot Juice popsicles and V8 juice for Charlotte.  Sean is pushing the cauliflower.  It's not like they recommended a diet change, but we both feel anxious about it.

Friday, April 11, 2014

Catching up...

Alright, I'm a slacker!  It's been a month since Charly's last chemo and LP, and I ended up bringing her back for chemo again yesterday without an update.  I’m going to post an extra long update, and swear to do better in the future.

Friday, March 14, 2014
We came back Monday from Orlando with a cold...again. I was so fed up, that I booked a triple appointment for Charlotte, Naomi, and I with our GP, Dr. Hoggard. I was probably the least symptomatic, but I figured if the girls were positive for strep, I wanted us all on antibiotics.  It was starting to feel like we were recycling the same bug over and over.

Dr. Hoggard, our GP (who incidentally, hasn't seen Charly since her diagnosis), checked us all out.   He asked about Charlotte's hospital visit 2 weeks before, because the hospital sends up updates every time we go in.  I explained that it was because Charly’s ANC level was so low, they admitted her.

After reviewing us all, he put us all on antibiotics, and gave Naomi some cream for her acne, AND that awesome make-the-kid-sleep-through-the-night cough syrup.  Bonus!

The next day was Charly’s chemo and LP visit.  It was at 11am, and Charly wasn’t allowed to eat until her LP was over.  They were backed up, and she didn’t end up eating until almost 2pm.  Poor kid.  Since she was coughing, they gave me the option to wait until next month for her spinal tap.  Maybe I’m a horrible mom, but I said to just go ahead and do it.  I couldn’t imagine making her skip another breakfast, and by that time I knew our appointment for the next month would be after lunchtime because it was so late in the day.   Charly went through the procedure with flying colors – no problems whatsoever.

Her ANC level was 700 – the cold knocked her down again.  Thankfully, that meant that her nightly chemo dosage would not be increased.

April 11, 2014
Charly just had chemo yesterday.  Her ANC is 1400!  That means they aren’t going to increase her chemo again. She would need 2 months in a row with levels higher than 1900 for them to do that.

It’s my opinion that our difficult December and January was because her dosage was just too high.  She was catching all the bugs from kids at school, then her ANC would be high because her body was fighting off infection.  The high ANC levels made the docs keep increasing her dosage, which just increased her susceptibility to catching colds. The lower dosage that she’s been on since she went neutropenic at the end of February appears to have been more beneficial for her in regards to fighting off colds. (Alycia’s theory, not substantiated by the medical professionals).    It could also be the end of cold and flu season… who knows.

I’m so grateful that Charly has had a month free of any coughs or sniffles or fevers.  It’s been so wonderful! 

Her skin rash came late this month.  The dermatologist said it was from steroids, and she won’t get over it until she can be off the steroids for a couple months.  The oncologist got to see the rash in its full glory at the visit yesterday.  They both hummed as they looked at it, but unless its life threatening, there’s nothing they will do about it.  The cream the dermatologist gave us helps slightly, but I feel bad.  It looks itchy and painful when it’s in full bloom.  It usually last about a week to 10 days, then clears up.  Then comes back after she’s been off steroids again.

I’m resigned to seeing her face all rashy.  They almost look like hives now, instead of pimples.  It also seems to be climbing down her neck.  I will be happy to see the steroids go, but she’s on them for 5 days each month until she is completely done with chemo.  She is on them again this week.  I’m prepared for another week with a grumpy, hungry girl.  Thankfully, they wear her out, so she crashes about 8pm while she is on them. 


Overall, a great appointment.

Tuesday, March 11, 2014

Neutropenic

February 25- 27, 2014
Charly started running a fever late Sunday night (she was over the 101 mark).  She was pretty upset that she was about to get dragged into the ER with the fever.  When I called the oncologist on call, and based on Charlotte’s ANC numbers from 2 weeks before (1900), the doctor told me I could watch her and if her fever hit 102, to bring her in.  Charly hovered at 101.5 all night.  She woke the next morning and told me she was so happy she didn’t have to go to the ER the night before.

I called the clinic first thing in the morning, figuring they’d want to see her.  They told me to bring her in.  When her regular oncologist saw here, he was not too happy that I had been told that Charlotte could stay home.  I pretty much got the idea that somebody was going to be chewed out royally after he left the room.  They hooked Charly up to an IV and ran antibiotics.  This is the 4th time since she was diagnosed that we have had to do this, 3 of which were in the last couple months.  They took blood to check for infection, and a nasal swab to see if they could identify the virus. 

Every other time we have had to do this, we have been sent back home once they have finished the antibiotic IV.  Unfortunately, this time Charlotte’s ANC (Absolute Neutrophil Count) was 200.  Her ANC is how they measure her ability to fight off infection.  Anything below a 500, and they admit the child.  Dr. Barnett came into the room and said, “Well, I hope you brought your pajamas!”  I did not.  I figured we’d go home again, and decided NOT to bring our overnight bags.  We were warned to always bring an overnight bag when we bring her for a fever, but she’s never had to stay, so I totally forgot to bring them for the FIRST TIME EVER.  Apparently that’s another version of Murphy’s Law – go to the hospital unprepared to spend the night, and you will be spending the night.

We had to wait in the clinic room for 3 hours while they tried to get Charlotte a room in the Immuno-compromised unit.  Primary’s is undergoing major renovations, so our time in the clinic was accompanied by the sound of jack hammers from the floor below us.  Charlotte was miserable.  Uncomfortable chairs, coughing, fever, jackhammers, lunchtime and no food… 

Waiting for a room

When we finally got a hospital room, I called my mom and she came to stay with Charlotte while I ran home for our overnight bags and to get Naomi situated. 

Charly and I ate popcorn, watched Ponyo, and ordered room service.  It would have been the perfect night, except for she had to sleep with her port accessed.  She hates that.  Around midnight she suddenly called out, “MOM!” and I jerked out of sleep.  She had rolled over in her sleep and popped the IV out of her port.  There is a ¾” needle that accesses her port, directly in the center of her chest.  It pokes out about an inch from her chest, and being a fellow stomach sleeper, I can imagine how awful it is to try and sleep with that protruding from her chest.  She’s only had to do it a handful of times, but she HATES it.  She also has never accidently popped the port out.  

The nurse had to re-access her right away, since the port hadn’t been “locked” by heparin before it was de-accessed.  My nursing friends would know what that means, but basically it’s a chemical they put in before they de-access the port to prevent the blood clotting in the line.  Otherwise, if they hadn’t been concerned about clotting, they would have let her sleep without re-accessing her port.  Charlotte started to cry, because the nurse said she didn’t want to wait the 30 minutes for the Emla numbing cream to work.  She told Charlotte they’d use the freezing spray instead.  Charly doesn’t like the freezing spray.  Eventually, we got everything back together and we all went to sleep. 


Room service for breakfast!

The next day was a waiting game.  Finally, about 2pm, they let us bring Charly home.  She had to keep her port accessed however, because we were to administer IV antibiotics twice daily for the next 4 days.  We were also to stop giving Charlotte her nightly chemo until they told us to begin again.

The IV antibiotics were very interesting.  There are some innovative, smart people in the world.  The “medicine ball” they delivered the antibiotics in is proof of that.  We would take the IV, clean off the tip with alcohol, push a syringe of saline in, then attach the ball to her IV.  When we would release the clamp on the ball, through pressure of an interior balloon, the medicine slowly pushed into her IV for the next 30 minutes.  When it was done, I would detach the deflated ball, push another syringe of saline in, and then a syringe of heparin.  I gave Charly the morning dose before I got into the shower, and the home health nurse came to help Sean his first time in the afternoon.  On Thursday, the home health nurse came to draw blood samples.  By that afternoon, we were approved to discontinue the antibiotics and de-access Charlotte.  Charly was re-started on chemo pills in the evening, but they thankfully decreased the dosage. 

We were also cleared to take Charly on the planned girls’ trip to Orlando.  I had booked tickets and hotel back in December.  When she was admitted less 10 days before the trip, I started wondering what I’d do with the tickets.  The oncology nurse I spoke with commiserated with me.  “This was supposed to be an okay time to plan travel - now that we are done with the hard chemo and in maintenance!  What do I do?  Should I cancel the trip?”  I complained

“Yes, I know.  It’s hard to plan these things.  We don’t want to tell anyone to stop living.” The nurse replied, “We’ve had some kids that spend their entire vacation in a hospital, because they caught something on their trip and started running a fever.”


We decided to go ahead as planned, but I will admit…when Charly started to cough and sniffle the night before we were to go home from Orlando…I laid awake with visions of missing our flight home, stuck in a strange hospital and trying to figure out how to get home.

Charly after my sleepless night.  

Sunday, February 16, 2014

Chemo for February

Charly had another chemo visit this past Thursday.  I’m slacking about posting on the day of the doctor visit.

I would say it has not been a great month.  Since Charlotte’s increase in her chemo meds, she has had a couple major colds, some migraines that were so bad, she threw up, and an ear infection.  She has puked more this past couple months than she has during the entire 9-month “hard chemo” time.  She wakes up most mornings complaining of a sick stomach and sometimes she throws up. She wasn’t feeling well on the morning of her baptism.  I prodded her to eat some toast, and she got dressed and was baptized, even though I could tell she wasn’t 100%.  Last week, while she was on antibiotics for her ear infection, she didn’t want to eat anything.  Nothing tasted good.  Her stomach bothered her.  But she still went to school every day.  I am humbled by her perseverance in the face of adversity.  I also feel as low as dirt for encouraging her to go to school when she is feeling so crummy.  

I called the doctor’s office on February 6th, a week before her scheduled monthly visit.   I just wanted to make sure that perhaps someone didn’t screw up on the chemo dosage and somehow miscalculated the math when they wrote the prescription.  I told the oncology nurse how much Charlotte had been nauseous and how she was losing her hair at an alarming rate.  The nurse spoke with the oncologist, and they suggested we give Charlotte Zofran for the nausea, and that chemo sometimes makes the kids lose hair…even while in maintenance.  So basically, keep going on.

Her hair started coming out in large handfuls a couple weeks ago.  Sean would leave a comb full of hair on the bathroom counter, and when I’d come home from work, I could see how much came out each day.  I’d pull the handful of hair off the comb and throw it out, feeling sick.  Sean said he left the full comb on the counter because he was in a hurry, not because he wanted to show me how much hair she was losing. Whatever the reason, it has been upsetting.  

Last Saturday, I put down an ultimatum that Charlotte needed to wash her hair.  She had been taking baths all week instead of showers, and I can’t tell if she entirely skipped washing her hair, or if she just didn’t rinse it properly after washing it. It was so dirty looking.  I was thinking the weight of the grease or dirt wasn’t helping with her hair loss.  I was pretty firm about it.  Either she would let me wash her hair, or she couldn’t go to the Lego movie with her dad.  She ran off crying.  I found her 15 minutes later on the stairs with giant crocodile tears running down her face.  “Charly, what’s this all about?  Why are you so upset?” 

“I’m afraid my hair will all fall out if I wash it, mom.” 

I cuddled her on the stairs and told her it would be alright, I would carefully wash her hair in the kitchen sink, but it needed to be washed.

Charlotte knelt on a kitchen chair, leaning over a towel placed over the rim of the kitchen sink for a cushion, and I washed her hair as gently as I could.  I still rinsed a lot of it down the drain.  Where the hair had been so thick, it had thinned so much over the past week that I could see her scalp in places.  Thoughts start going through my head – “What if the medication isn’t working?  What if the medication is killing her?  What if her hair never grows back?” We finished up, I gently towel dried and combed her hair, kissed her on her cheek and told her thank you for letting me wash her hair.  Then I went into my bathroom, locked the door, and sat on the floor and cried.

At her visit, the oncologist reminded me that everybody loses hair every day.  It’s normal. However, for cancer patients, since all their hair grows in at exactly the same time, it’s all on the same growth cycle.  The patients tend to lose larger quantities at the same time.  Also, chemo is essentially a poison.  Some kids will have higher hair loss as they continue taking chemo.  Basically, we are to suck it up and stop worrying because it’s not like they are going to stop chemo to save her hair.  (They didn’t say that.  They are very nice and sympathetic, but in cancer treatment the only option is to continue moving forward, no pause or stop.)

Charly’s ANC counts were still higher than they want them to be during maintenance.  Last month, they were 4000 – but she was just getting over a virus, so they attributed her high counts to her body fighting off the infection.  This month, the ANC levels were 1900.  They want her between 950-1400.  Normally, after 2 months being high, they would increase her chemo again.  However, given the problems of the past two months, they decided to wait for one more month before increasing her dosage.  If she is high again next month, they will definitely increase her dosage. 

They also warned me that they were prepared to increase her meds up to 150%.  Last month, Dr. Maese mentioned she was at 80%.  (Percentage of what, I’m not sure.  I will put that on my list of questions for next time.)  But based on those percentages, I guess they are prepared to have her take as much as double the amount of chemo she is taking now to achieve the blood results they are looking for.

Yuck. “Just get us through the cold season and into spring!” was all I said.

Dr. Barnett said that even though we were warned to give her chemo on an empty stomach, if her nausea persists, we could give her half a granola bar to take with her meds at night.  As long as whatever we give her with her meds is not milk-based.  We also have been taking advantage of the Zofran prescription that helps prevent nausea.  Charly only has taken this medicine twice for nausea during the first 18-months of her treatment, but she’s had about 6 doses of the medication in the last few weeks.  It just goes to show how miserable she must be feeling.


On a brighter side… The last couple days, it seems her hair loss is now a lot less.  Only a few strands come out when I comb her hair.  She also hasn’t complained of nausea as much, and hasn’t thrown up for a week.  I do wonder if it’s the antibiotics that she was taking that caused the stomachaches – not completely unheard of.  They asked if any of our family had been sick in the last month, and we have not.  She could have caught a mild stomach bug at school.  It’s all guess work. I’m just praying that we see better results next month.

Friday, February 7, 2014

Tales of a Traveling Salesgirl - part 2

Waikiki, HI - October 2006

Our office had presented a team course for staff in Hawaii.  Technically, it was our boss who did the presenting.  However, a few months earlier, I closed a really profitable, real uncommon, 6-figure sale.  I went into Gordon's office, slapped the invoice for the sale onto his desk and told him he needed to take OUR team to Hawaii for the course.  He agreed, and we brought the entire team to work the course in Hawaii.  

This is a rare event for our office.   We even got our own rooms so we could bring our spouses (at our own expense, of course).  On the first day of the trip, Gordon had a 3-hour team meeting, then we had the course from 6am to 5pm on the next two days.  On the last day of the trip we were scheduled to fly home at 10pm, but we had the day to explore the island.

Sean is not an early-morning guy.  It didn't matter if there was a 4-hour time change to his benefit.  I woke up at 6am, and decided to go sit on the balcony to read a book in the morning sun.  I sat on a lawn chair, with my feet stretched out and balanced on the balcony railing.  The ocean was making a lovely swooshing noise in the background, and my book was excellent.  A warm, humid breeze blew the smell of exotic flowers and ocean.  At one point, I realized that the breeze seemed to be picking up.  I paused reading, thinking, "Wow, the breeze is blowing so hard, it feels like the building is swaying."  Which, when you think about it, is ridiculous.  Breezes don't blow hard enough to move a building.  

Right when this thought crosses my mind, Sean ripped open the curtains to the balcony windows and snaps at me, scowling "Don't you think you should come inside now?!"  

Apparently, we just experienced an earthquake.  They are remarkably quiet if you are sitting outside.  Hearing my co-workers' accounts of the quake, it was quite noisy inside the hotel.  

I can't remember the magnitude of the quake, but it knocked out power to the entire island of Oahu.  The elevators and for a while the water (which means the toilets) didn't work.  Eventually, they did get the water working, but the power remained out all day.  I asked Sean if we should be concerned about a Tsunami or not.  We were somewhere in the double-digits for our hotel floor, and figured it was higher than the ground floor.  If a wave actually reached the hotel that was that high, we figured it would cover the entire island and at that point, it was pointless to try and find higher ground.  So we chatted to our hotel room neighbors as we hung out on the balcony.  

My friend & co-worker, Amy, has a cop husband (Mike), who immediately packed up Amy and drove to the high ground.   I guess that must be all that emergency training kicking in.  Unfortunately, Amy was splitting the car rental with Valinda and her husband, Dan.  Valinda and Dan were in the hotel room a floor above us.  While Amy and Mike were fleeing for high ground, Sean and I were chatting about tsunami potential with Valinda and Dan.  Amy still gets grief from Valinda for abandoning them at the hotel.  

Thankfully, there was no tsunami.  But the entire day was a bust.  We didn't dare check out of the hotel room, because flights leaving Oahu were being cancelled left and right.    There wasn't anywhere to go as a tourist, because there was no power.  All the shops and places that ran off credit cards were gated off. Proprietors would only allow one customer inside the store at a time, and only could take cash transactions.  Somebody from the group stood in line at the nearest ABC store and bought a loaf of bread and peanut butter so we could all have lunch.   By dinner time, the hotel had pulled out BBQ grills and was charging an enormous amount for hamburgers and hot dogs - eaten by candlelight in their restaurant.  

Random knowledge shared by another employee’s husband - the hotel won't charge you for drinking the $4 bottled water in your room during an emergency, and they keep emergency supplies like flashlights in the mini bar.

A couple hours before our flight, we decided to trust Delta’s assurances that we would be flying out that night.  We returned our car rentals to a completely dark parking lot after driving through streets with non-operational stoplights. For the first time that day, we saw evidence of electricity at the airport.  Thankfully, we were able to take off about 10:30 that night and return home on the first flight leaving the island since the quake that morning.

Gordon was quite thrilled that he had left the evening before, missing the entire adventure.

Atlanta - March 2008

This story is a pretty interesting one.  It also contains some of those cringe-worthy moments that come from realizing too late the filter between brain and mouth hasn’t been engaged.  

This was a stupid trip.  It was my first time working a booth in a convention hall.  I have since learned much about running a booth, but at the time I was clueless.  Somebody else was in charge of the planning, and I was just told where to go, and what days I would be working.  It was at a point in our company when we were collaborating with a group out of Arizona.  Gordon was being heavily courting to be the dean of their educational organization in Arizona.  The "powers that be" wanted someone from our organization to work with people from their group at their booth at the 2008 Hinman Dental meeting meeting.  That's how I ended up sharing a hotel room with Shayna from Arizona.

I had been traveling for work for a few years by this time, and I was confident in my abilities to sell, even though I’d never worked a booth before.  By the end of the second day, I felt we had been doing successfully, but my feet were killing me, and my voice was starting to wear out.

Shayna and I were so tired, we decided to get Chinese dinner from the restaurant outside the hotel and return to our room.  The two nights previous involved social schmoozing events, later nights, and a lot more alcohol on the part of Shayna and the other Arizona people.  Shayna and I had just put up our feet and started to read what exactly we were supposed to do in order to pack up and return ship our booth the next day. It was about 8pm and a storm was building outside.  I remember exclaiming, “I LOVE thunderstorms!” to Shayna and getting up to pull open the curtains to look out at the lightening.  Shayna agreed and got up to look out the window with me.  

It took a second or two looking out the window to register that I was looking at an orange construction barrel flying at eye level of our 3rd floor window.  I faintly stated, "We should probably get away from the window", and I start walking away from the window.  At the same time, Shayna starts screaming and runs for the hotel room door.  I know it sounds hokey, but a voice in my head clearly stated, "Do NOT open the door."  I rushed after Shayna, reaching the door only seconds behind her.  She succeeded in pulling open the door 2-3 inches, and I placed my hand above the sliding lock over her head and shove the door shut.  The moment she opened the door, there was a "POP" sound as our floor-to-ceiling windows shattered and the room was then filled with a loud roaring noise.  I don't know how I managed to throw a grown woman around, but I grabbed Shayna and shoved her into the bathroom and shut the door.  For one moment, I almost immediately went back out to get my cell phone off my hotel bed.  I stopped myself from opening the door and firmly folded my arms and turned around to lean against the door to prevent me from leaving.  The noise was unbelievable.  It also lasted only moments.  Shayna and I stared at each other – She sitting in the bathtub and me leaning protectively against the bathroom door. I don't think we said a word.  

When the noise stopped, I ran out of the bathroom to grab my phone.  I could see our curtains flapping outside in the breeze.  Car alarms and sirens could be heard from outside.  We stepped up to the edge and surveyed the chaos below.  Billboards and traffic lights had been crumpled like tin foil.  Cars overturned, and debris everywhere.  I start slapping everything into my suitcase, and grabbed the booth orders, because there were credit card numbers on them. Clutching the orders to my chest, I declared, "Grab the orders! There might be looting!"  We quickly gather our stuff to vacate the room.  I turn around to see Shayna kneeling before the mini bar.  "Don't judge me" she declared vehemently, as she thrust both hands into the mini bar and came out with over a half-dozen mini alcohol bottles - the little necks protruding from between the fingers of her hands.  "I REALLY NEED THESE!" She said as she shook her fists-full of bottles at me.

I get on my cellphone to let important people know I was alright.  First, I call Sean.  As usual, it went to voicemail. He doesn't like to answer the phone…it’s kinda annoying.  Then I called my folks. They were happy to hear I was okay, although they hadn't heard anything about the tornado yet in the news.  Finally, I called my boss.  I suspect he initially thought I was exaggerating.  When I told him about our windows and the crumpled billboards and overturned cars, he was amazed at HIS good fortune for leaving earlier that afternoon.  "I have the most amazing luck!  I always seem to leave and just miss things when something major happens. Floods, ice storms, the 9-11 attacks…  I left before the earthquake in Hawaii, and now I missed this!"  This is where I cut him off and said I had to go and hung up on him.  I needed two hands to carry my luggage down the stairs, and I didn't want to help Gordon marvel about Gordon's good fortune.  

Stepping out of our room, the hallway was covered in broken glass from the skylight some 18 stories above us being shattered.  Looking over the atrium balcony, you could see giant planters had been blown across the lobby as if they were made of Styrofoam instead of cement.  Shayna and I passed a gentleman who, for whatever reason, decided to investigate what was going on in the hallway wearing nothing but his tightie whities.  He inquired if we were okay.  We called over our shoulder as we muscled our luggage into the emergency stairwell that our windows were blown out, so we were going to the Hilton.  (Because, obviously, Hilton’s are tornado-proof, unlike the cheap dive we were currently residing).

Upon reaching the lobby level, we were directed by the hotel staff to a lower ballroom with no exterior windows.  There were still tornado warnings in the area.  We remained there for a few hours.  During that time, Shayna chugged the half-dozen bottles that she swiped from the mini bar, she then bummed a couple cigarettes from another evacuee and went to the parking garage to smoke them, and somehow she found someone with a spare Valium.  I thought I was handling everything pretty well, until I did something so stupid, I still cringe when I think about it.  

The executives from the Arizona group were staying at the same hotel.  They were all dressed in their suits & ties.  They stood in a circle and had their arms folded and heads bowed with serious expressions.  I walk up to the group and said, "Are you praying?"  They looked at me, like I was a little crazy, and one of the men asked how I was doing as the rest of the group dispersed to the other side of the room.  

The part that is cringe-worthy is because it had been a serious question. Hello!  They had their arms folded - that's Mormon for "Prayer Time"!   Knowing what I DID know about these guys, I definitely shouldn't have drawn that mental association.  Their religion was strictly for the church of the almighty wallet.  Yet, the tornado apparently rattled me enough to make me forget that and sound like a total rube.

Finally, the hotel staff gave us the "all clear" signal. We did head for the Hilton, where another staff member from Arizona had her own hotel room.  I'm still not clear how it was that I ended up sharing a room with Shayna.  If Shayna had a co-worker at the meeting, shouldn't they have shared a room? Honestly, they worked together! I digress.

The walk over to the hotel was amazing.  All the hotels and buildings in the area had random windows blown out, with curtains blowing in the wind.  All that damage, accomplished in only a few minutes. We tried ordering an additional roll-out bed at the Hilton, but they were out.  I was so tired, I declared that the three of us could share the king-size bed, because I was too tired to care. I passed out after showering to get the glass out of my clothing and hair.  

The conference was cancelled.  Nobody was allowed into the exhibit hall, because the roof had massive damage and broken pipes resulted in a flooded exhibit hall.  Millions of dollars of dental equipment, destroyed.  


When I returned home, I recall finding glass shards in my luggage after I unpacked.  I also gained a reputation as being the girl you don’t want to travel with, as apparently natural disasters occur around me.