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!

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.

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.

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.  

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 6^th, 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.