Christmas Chemo

Yesterday, Charlotte and I had a 8am appointment at Primary’s for her monthly chemo visit.  We scheduled it early, because she was also getting a LP (lumbar puncture/spinal tap).  Since they would be sedating her, Charly’s not allowed to eat from midnight the night before or drink from 3 hours before her appointment.  We find the earlier, the better on these appointments.

Of course, Salt Lake City experienced freezing rain and snow that started the night before.  The drive up was okay for the first half, but by the time we hit the half-way mark, the snow increased and everyone was thankfully going slow.  I planned extra time into my commute, but we were still 15 minutes late.  Since a lot of the clinic staff were also delayed, it wasn’t a problem.

Charlotte’s hemoglobin was high last time.  Dr. Maese explained that it can go up to 20x the normal level before they get concerned, and Charly’s was 10x the normal level.  It’s due to the chemo, the liver will go back to normal when we discontinue the chemo, but in the meantime, they keep an eye on it.  He didn’t report any concerns with her hemoglobin levels after reviewing the blood results, but her ANC level was 1900.  ANC (Absolute Neutrophil Count) is how they measure her immune system, a normal system is between 3,000-5,000 (I had to Google, because I couldn’t remember).  During maintenance, they want Charly’s ANC to be lower than normal, but higher than what she would have been during the hard chemo – around 1000 (according to my notes from the start of maintenance, but I’m going to ask next month to be sure what the goal is.  She’s rarely been that low).

Because it worries Sean, which starts me getting worried, I did ask if these consistent higher ANC levels were anything to be concerned about, and if they were associated with a higher risk of relapse.  Dr. Maese assured me that was not the case, and that some patients just need to keep increasing the medication to achieve the levels they are looking for.  Last month, they increased Methotrexate to 10 pills every Thursday night.  This month, they increased her 6MP (Mercaptopurine) to 2 pills every Monday – Friday and 1.5 pills on Saturday and Sunday.  Charlotte hasn’t been showing adverse reactions thus far to the increased meds, so I’m hoping she won’t feel any affects from this increase.  Charly is back on steroids for the next week.  I have noticed that by the end of the 5 days of steriods, she is exhausted.  Last month, she passed out on the couch at 6pm, and I woke her just to give her chemo and put her pjs on.  She went right back to sleep for the rest of the night.  I don’t remember seeing her fade so quickly during the summer, so I assume that school is what makes her so tired.  

We crossed the hall for her LP, and while she was being sedated, I asked the nurse how many of the patients used the clinic for conscious sedation versus those who chose general anesthesia in the RTU on the first floor (rapid treatment unit).  I asked because given the amount of LPs that a cancer kid has to go through, I would expect to see more traffic in the sedation area.   Also, when speaking with a mother of a lymphoma patient, she shared how her son received too much anesthesia in the RTU and his heart stopped.  The staff had to start CPR on her son. Thankfully, her son is fine.  I asked if she ever used the clinic for his LPs, and she said no, they always used the RTU.

Charlotte's nurse admitted that a lot of families prefer the RTU downstairs.  She shared that some families were hesitant to do the conscious sedation in the clinic, preferring to use the RTU and general anesthesia instead.  Those families who do try the clinic usually end up using it from that point on.  A few families decide to return to the RTU, not liking the conscious sedation.  The nurse told me of one mother who did not like being in the room with her child while the spinal tap was being accomplished.  In the past, Sean has shared with me he does not like watching them accomplish the procedure.  He didn't understand how I wasn't bothered by it.  Honestly, if I let it, I'd probably be bothered by EVERYTHING.

In the RTU, the patient is allowed to go into the treatment room with one parent.  The parent stays just long enough for the anesthesiologist to knock the child out, then the parent is escorted out of the room.  When conscious sedation is done in the clinic, Charlotte is treated by a nurse practitioner who gives Ketamine and Versed through her IV.  She is lying on the table and her eyes dilate and shiver.  She then is curled into a ball and the oncologist or the nurse practitioner accomplishes the LP.  One nurse monitors the heart rate and breathing, and another nurse holds Charlotte in the correct position while the nurse practitioner takes the spinal fluid.  Charly will sometimes nod or blink when the nurses ask a question.  I'm only 4 feet away, directly in Charlotte's line of sight if the nurse isn't standing between us.  I don’t mind being nearby, watching and listening to what they are saying about Charlotte’s treatment.  I listen and can tell her nurses that she can take a relatively light dose when they ask how she reacts to the medication.  Charly usually comes out quickly.  Yesterday, when the nurse looked at the records and asked why Charlotte received a higher dosage than usual last time, I could remember that her spinal fluid was slow to come out, and Charlotte started waking up a little while they were collecting their fluid sample.  

The clinic gives less medication and is just as effective.  She’s not under as long, and recovers more rapidly.  It’s also nice financially.  There isn’t a separate charge for an anesthesiologist not to mention the other bills from the RTU.

After our clinic visit, we get into our car, which has accumulated 3 inches of snow during our appointment.  The drive was slippery and slushy, so Charlotte and I decided to stop and get brunch at Village Inn.  Charlotte had a fried egg, sausages, and fruit, and I had an awesome Belgium waffle and bacon…except Charly swiped my bacon.  It was nice to watch the snow fall outside the restaurant and snuggle on the corner bench seat with Charlotte. We chatted about school and dance class, about games on the iPad, and we talked about what she wants from Santa (she says she doesn’t have one thing she REALLY wants, and would be happy with a surprise).  We finished our brunch, and started the drive home.  We had to make a stop so I could pick up a booth backdrop I purchased for work, and we made it home by 1pm.  

Sicky Sick Sick

On Tuesday morning at the Javitts Convention Center in New York, I received a text from my mom to call her when I could. 

I go to a place with better reception, and find out that mom's been throwing up since midnight. She watched Charlotte while Naomi was at dance class yesterday, then brought them both to her house for dinner after dance class. She was also going to stop by and make sure they were doing homework etc after school Tuesday.

Well, it's too late at this point to bemoan Charlotte's exposure to the bug. What could have been done? If you aren't symptomatic, you don't know you are carrying. In the meantime, I texted Naomi and she said she was fine watching Charlotte until Dad and I got home at 8ish. Sean's job doesn't allow for him to get phone calls while on the call center floor, and I was going to be out of contact for 4 hours while flying home. I checked with Amy and Ashly to be "in case of emergency" contacts, and admonished Naomi to make sure Charlotte practiced piano and worked on her math homework.

While waiting for our plane, we speculated if we'd be able to land alright. I already saw on news that morning that Salt Lake was going to have 6.5 inches of snow that day. Thankfully, we landed a bit behind schedule and I drove myself and my coworker home. I'm thankful for my 4-wheel drive! The roads weren't well-plowed yet, and there were a half dozen spin offs we passed on the way home. I drive slow in the snow...because I don't like the sensation of spinning 360s out of control. I finally got home at 9:30, and climbed into bed an hour later.

At 4am, Charlotte comes into my room and says her stomach hurts. I'm still so exhausted, I just deposit her in front of the TV with a pillow, a blanket, a Sprite, the barf bowl and some cartoons, and I go back to bed. At 4:25am, she comes back to tell me her tummy still hurts and the TV isn't taking her mind off it, so I heat up a bean bag for her stomach. I crawl back into bed, and my alarm goes off 10 minutes later. After I get out of the shower, Charlotte knocks on the bathroom door.

"Mom, I have some good news and some bad news. Which one do you want first?"

Fairly certain what's coming next, I tell her to tell me both. "Well the bad news is I threw up. The good news is my tummy doesn't hurt as much."

I clean up the mess, tuck her into her blanket and tell her I've got to go to work and close out the orders from our trip. I promise to get back home before Dad needs to leave for work, and I finish getting ready to go.

Gordon is a cheerful guy this morning. Those of us who worked for him for so long know this is his absolute least favorite time of the year. The only time that comes close to the low sales of December is August. Our two worst months, and December is almost 40% lower than August. We get to hear about "brain dead people" and "the family time suck" of the holidays. On top of the poor sales, it's the time of the year when he prepares for his annual product Update lecture. It's a huge project, that always gets him wound up until its finished. He comes in commenting how a co-worker is going to be gone all day, and how he is going to talk to us all at staff meeting. We should never be gone after he's been gone on such a long trip like the one we were just on. I reminded him that the email my coworker sent everyone told us she had a doctor appointment and would be in by noon. Then, I had to tell him that I was going to be leaving early, because Charlotte was sick and Sean had to go to work at 11.

That went over fairly well.

Then another coworker called in sick. And another called in to say she was on her way but running late because of the bad roads. Considering there is only 7 of us working in the office...

I drive home, narrowly missing a fishtailing idiot in a pick-up who doesn't know ice and rear-wheel drive means rapid braking and accelerating is not a great combination. I meant to bring home Gordon's article that needed its references added onto it before submission. It's a massive chore, and I only made it 25% done before I had to leave. But, I left the stack of papers on the counter by the time clock. By the time I realized my mistake, there was no time to turn back. And there was no way I could drive 40 minutes with a puking child to go to Provo and then back home.

At home, Charlotte was still not doing so great. Sean shares she threw up a few more times and she asked for Zofran - the anti-nausea drug they give her for chemo. She threw up once more for me, and I called the oncology department just to confirm when the doctors would want me to call. If she wasn't holding down liquids, they wanted me to call, and if she ran a fever above 101, they wanted a call. Since there was no fever, I sat next to Charlotte and we dozed in front of cartoons. A loud noise roused us both from our snoozing. Charlotte had kicked off her blanket and her shirt had risen above her belly. Her hand lay on her stomach like it pained her. She sat up and crawled to my side of the couch. "Can I lay on you?" and she leans her forehead against my cheek. My stomach sank. She felt hot. I took her temperature and it was 101.8. I called the oncology department for a second time today, and they told me to bring her up to the clinic. It was 2:00, and they said their cut off was 3:30. After 3:30, they have the patients go to the ER instead.

So Charlotte was stuffed into her coat and boots, pjs underneath, put some numbing cream on her port, and we headed up to Primary Childrens. We got there 10 minutes before the cut off. Thankfully, the roads had cleared significantly since this morning. The drive up perked up Charlotte. She chatted like a magpie from the backseat. All I could think was that we would get all that way, and her fever would be gone, and the doctors would be like, "Just another Crazy Mom".

It turns out, when Charlotte was checked into the clinic, she was still running a 100-degree fever. Since we called ahead, her medicine only took 15 minutes to arrive. Usually, it takes at least an hour for the pharmacy to deliver the medication. Her blood cultured, and she was given a giant dose of IV antibiotics and some IV liquids. It took about an hour and a half. By the end of the appointment, her fever went up again, so she was given Tylenol. We aren't supposed to use Tylenol without permission from a doctor, as it can mask a fever. The reason I had to bring Charlotte up to the hospital is that they are very concerned that any cancer kid who has a port may develop an infection. Since a port infection can be deadly, any fever above 100.4 that lasts for more than an hour, or immediately for a fever of 101 means I call and go to the hospital. They do a blood draw and culture the blood to see if she has something going on with her port. Today's blood culture didn't show anything they were concerned with, and her ANC levels were 2300 (saying her immune system is pretty strong).

Before we left, the doctor told me if her fever wasn't gone by tomorrow afternoon, to call and they'd want to see her again tomorrow to make sure something hasn't developed between today and tomorrow. Charlotte and I head home in time with the 5 o'clock traffic. We dropped off her prescription at Walgreens, filled up my gas tank, dropped by Wendy's to get Naomi and I dinner, and Charly a baked potato, because she decided she was hungry. Then we picked up Naomi from her dance class and I am DONE! Pooped!

I'm so thankful this happened today, instead of yesterday, with the snowstorm and me out of town. I'm so thankful Charly has kept her baked potato down for over an hour, and I'm so thankful for my pajamas. I'm going to keep her home again from school tomorrow and keep an eye on her. I'll still have to run to work for 3 hours, to get that stupid article sorted out, but it'll be manageable.

I hate steroids

I probably shouldn't say I hate a drug that is helping kill my child's cancer, but I do.  

When you think of steroids, your first thoughts are probably of athletes that use these drugs to enhance their performance.  But that isn’t the only use for steroids.  I was prescribed steroids once before to help with an allergic reaction.  Because of how quickly they suppressed my reaction, I used to wonder why the doctors were reluctant to prescribe me steroids for future breakouts.  Instead, I was told to use an antihistamine cream that would take forever to work.  I have since learned that steroids can cause cancer, which is ironic, because they are also used to fight cancer.  

For the first month of Charly’s treatment (the Induction phase), Charlotte received steroids twice daily for 30 days.  They caused indigestion and heartburn, so she was also on an antacid.  The steriods also caused high blood pressure, so she was on blood pressure medication.

For the first two weeks of Induction, Charlotte didn't eat much.  It was so cute how she'd sit down and enthusiastically start eating.  She'd eat a few bites, and start asking for what she wanted for her next meal or for a snack in an hour.  She would stop eating, because of the indigestion issues.  She would crawl into a ball with a tummy ache from the steroids.  I would heat up a bean bag and she would hold it against her stomach to help with the pain.

Then she stopped being bothered by the indigestion and gas.  She could manage to eat more than a few bites.  She would eat a full meal, leave the table, and come back 10 minutes later while we were still clearing up dishes and ask for a snack.  

Her face became moon-shaped, the weight gain causing her to lose the definition of her cheekbones and softening her jawline. We were warned her appearance would change and they were right.  Her stomach stretched out like she was a pregnant six-year old.  Looking back at my family updates during Induction, you can see how food became a main focus in her life while she was on steroids.  It got to the point where she would eat more than a full grown adult, then ask for seconds, then ask for a little extra again, followed a request for a snack an hour later.

I recall trying to distract Charlotte from food for at least an hour between meals and snacks, fearing she would cause herself internal damage if she kept eating.  Her stomach looked ready to pop.

Another side effect of the steroids is how it affects Charlotte emotionally.  Charlotte was always a very mellow child.  She suddenly became very short-tempered, and quick to cry when upset.  There was a reason the oncology nurses refer to the drugs as “Scare-roids”.  Thankfully, her hair-trigger temper disappeared a few weeks after she was taken off the steroids.

Charlotte had another 2-week run of steroids around 4 or 5 months after the Induction phase.  I knew it would be unpleasant, but it was still surprising to see how quickly the drugs affected her appetite and attitude.  After she was off the steroids for a couple weeks, the extreme mood swings disappeared and I breathed a sigh of relief.  I shared with our oncologist how much I hated the steroids and fervently voiced the wish that we were done with them.  Dr. Maese looked at me with an apologetic smile and broke the news – Charly would be taking steroids throughout the Maintenance period.  “But,” he said, trying to point out the bright side, “it’s only going to be for 5 days each month!”

Maintenance started 6 months ago, and we have another year to go until we are hopefully done.  Every 4 weeks, she has a 5-day dose of steroids.  Within 3 days of the starting on the steroids, the side effects manifest – hunger and short temper.  The residual affects usually last for a week after we discontinue the steroids. 

When she is under such a significant chemical influence, it’s a balancing act.  I want her happy.  When it’s time for steroid week, I plan on making her favorite meals – pork chops and mashed potatoes, chicken and broccoli casseroles, sometimes we go to McDonald’s for a Big Mac.  While she likes easier meals like canned soup and grilled cheese, a light meal won’t keep her satisfied when she’s on steroids.   

I try to evaluate if I’m helping or hindering her well-being when I yield to her demands.  When I mentioned that to a coworker last week, she declared if Charlotte was hers, she would want to give her anything she wanted, since she was battling cancer.  I have the same desires; but I know there lies danger in that route. I don’t want to spoil my sweet Charlotte and turn her into a raging monster. 

For example, a few months ago I sent Charlotte to get her nightly shower, and I grabbed clean pajamas for when she was done.  When she got out of the shower, she discovered the shirt didn’t match the pants.  She demanded I go get matching pajamas.  My hands were full at the time, so I told her she could choose to wear mismatching pajamas or she could choose to go get the matching pajamas herself.  She cried for 15 minutes before deciding to go get her own pajamas.  I wanted to just run down the hall and get a matching set, but there is no harm to her wearing mis-matched pajamas, and there is no harm to her crying until she decides what she wants.

Another night, Charlotte was unhappy with the dinner I prepared. I made rice instead of mashed potatoes to go with the pork chops.  She ran crying to her room and refused to eat. I let her cry in her room while we had dinner, hoping she’d change her mind.  She didn’t emerge from her room until we were finished with dinner and still refused to eat the rice.

If she hadn’t been on chemo and steroids I would have told her she could choose the dinner I prepared or make herself a bowl of cereal.  However, we give her chemo at her 9pm bedtime. 8pm is when Charlotte is not supposed to eat for the rest of the night, as she isn’t supposed to eat an hour before she takes chemo and for 2 hours afterwards.  That’s why instead of having any further battles about dinner, I microwaved and mashed a potato for her because I wanted to make sure she ate before it was too late.

After witnessing a steroid meltdown, someone unfamiliar with Charlotte would probably call her a spoiled brat or a baby.  She’s not.  She is the most sweet, caring little girl.  She loves to give hugs and kisses and will tell you she loves you.  She willingly shares her toys and treats with others.  She is quick to smile and forgive.  I raised this child, and I know her true temperament.  I worry about the long-term effects of steroid use – the breakdown of joints, the emotional ups and downs, the constant hunger – and I just hate steroids. 

Leukemia Awareness and Zambonis

Susan from the Leukemia Lymphoma Society called me at work last Friday.  She wanted to know if we heard about the Awareness night LLS was having with the Utah Grizzlies (Utah’s professional hockey team) on November 8. 

They handed out fliers at the Light the Night walk, so I knew there was an upcoming event.  Sean had a flier on his dresser and I had just been thinking the night before I should look into the details and see if that was something our family would want to do. 

Susan explained that since this was an awareness night, they were going to have children survivors go on the ice for the singing of the national anthems (U.S. and Canadian anthems).  Also, as Girl of the Year, Charlotte was invited to ride the Zamboni during one of the breaks.  How cool! 

Checking my calendar with Susan on the phone, I groaned.  I would be flying back from Chicago, and not arrive in Salt Lake until 9pm.  Sean has started his new job 2 weeks ago, and he doesn’t get home until after the puck drop.  I told Susan that I’d see if either my sister or my mother could take Charlotte if Sean couldn’t switch shifts.  Long story short, my sister Heather is probably bringing Charlotte and Naomi to the game with her two older kids. 

When I told Charlotte about the fun opportunity, and to check that she’d be willing to go, her first worry was that she couldn’t skate.  I explained that they would most likely have a carpet for them to walk on, and she’d be able to wear her usual shoes.  When I told her about the Zamboni, she wasn’t sure what I was talking about.  I googled a picture of a Zamboni for her to see and she just grinned.  She is very excited to ride the Zamboni.  She goes around the house saying “Zamboni!” and pumping her fist into the air.

I will make mom or Heather promise to take photos for me.  I’m bummed I can’t make it, but I’m still happy that Charlotte and Naomi will go and have fun.

Theory of Large Fruit

I have a theory.  If any large fruit – watermelon, cantaloupe, honeydew – enters my home whole, no one will eat it until the aforementioned fruit is cut up, either in slices or bite-size portions.  That makes sense.  Who would pick up and take a bite out of a whole watermelon?  However, I should clarify.  Based on many years of experience, I have come to believe I’m the only one who can cut up large fruit in my home.

When Charlotte asks for cantaloupe as we run through Costco, I think, “Do I have time to slice and cut up 3 melons before they will go bad?”  If the answer is no, I don’t buy the cantaloupes.   It’s not a huge deal to cut up fruit, but it usually takes a while, and is a minor mess to clean up.  I’d rather just eat a nice apple, plum, nectarine, pear, maybe a handful of grapes, strawberries or raspberries – any of nature’s more convenient single-portion fruits.

About 3 weeks ago, I came home to find a pineapple on my counter.  Sean had gone to the store.  He purchased various items, like red cabbage, kale, purple cauliflower - I don’t buy those items since I prefer to eat things that don’t stink up the house – and a pineapple.

Now, this didn’t start out as an experiment to prove any theory.  I have a busy life. I also figured that since Sean bought the pineapple, he had a purpose for the pineapple.  After a week and a half, Sean moved the pineapple from the counter to the fridge.  It’s now been in the fridge for over a week. 

Every time I open the fridge, I look at the stupid pineapple taking up half a shelf and wonder, is this thing going to get eaten before it goes bad?  I could just pull it out and slice it up, but my hands are suffering from the winter weather combined with a half-dozen paper cuts. I’m not enthusiastic about cutting up the pineapple and suffering the consequences.  So it sits. In the fridge.  Proving my theory.  I am the only fruit-cutting ninja in our home.