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 3-5^th 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.

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.  

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.

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.