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.

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.

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.