Phenon Updates archive

Date : November 2011 (25)

Travel and Chemo and Hair, Oh My

by Julie
Published on: November 28, 2011
Comments: 14 Comments

There’s so much that has happened that it’s not possible to do a proper blog post for each.  So, please forgive me as I do a bulleted list for things that deserve more time and attention.

  • We traveled to Hilton Head for Thanksgiving to be with Tim’s family.  We had a raucous, good time with good food and wonderful people.  Phenon did fine – she spent most of her time painting nails of family members ages 4 to 80’s, playing with hairstyles and hats, and making place cards for all in attendance at Thanksgiving-on-Friday.  Rowan had a terrific time playing on the beach with cousins, capturing (and releasing) hermit crabs, riding a bike, co-coordinating (with his cousin Lily) art-work for Thanksgiving dinner, and copying mazes for all of the children to complete while waiting for dinner.  We all competed in the traditional Connect Four tournament.  Tim came in second to his cousin Caroline, who won handily and elegantly, despite Tim beginning their match with a low blow! 🙂 (he said something along the lines of “Be sure to try your hardest, even though my daughter, who has cancer, is sitting on my lap right now.”)  I knitted as I socialized, and finished a number of hats on the long, long drive home.
  • When we got home, there was another round of presents and packages.  I wake up in the middle of the night worried about remembering to thank everyone for their generosity.  Last week, Phenon’s elementary school teachers (Go Forest Knolls!) sent her a very generous gift card and a hand-crocheted blanket.  The blanket was not attributed to anyone, but it is a beautiful piece of work.  It is truly gorgeous and she loves it SO much!  She also got lovely original art from the Lumias, and a thoughtful and wonderful gift of books from her high school age babysitter from when she was three (Amanda is now a gorgeous, grown woman who is changing the world for the better through her marvelous work).  Also, a thoughtful gift from friends of my parents who attend JHU adult education classes with them.  Matthew and family sent hats as well that were waiting for us when we got home. Thanks everyone!
  • Phenon started round 2 of chemo today.  Hospital math was a little more reasonable today.  We left the house at 7:37am and returned home at 6:52pm.  It was supposed to be a six to eight hour day of chemo.  Phenon has gained three pounds (hooray!).  They added a new anti-nausea medicine, supposed to be a heavy hitter, and we have a stronger medicine for home as well.  They also added an extra steroid that can reduce nausea and increase appetite.  They took benadryl out of the regimen, because it appears her allergic reaction to the etopophos is mild – but boy did she sneeze throughout the one hour administration.  She preferred to not be made sleepy, however, so that was better to her than getting knocked out for the day.  I also asked about the PANDA program that our friend Jeanne told us about, and lo and behold, an acupuncturist stopped by at 2pm, during treatment, to help her out.  Phenon had her first acupuncture treatment.  She was unimpressed.  She found the needles painful and uncomfortable, although each time the acupuncturist asked, she said they were fine.  The goal of the acupuncture treatment was to reduce nausea (apparently most effective if treatment is done before nausea kicks in) and to stimulate the immune system.  Phenon would like to not do acupuncture again.  Sigh.  I was hoping this would be our key to staying out of the hospital this time.
  • Last but not least, hair.  Phenon’s hair had been falling out pretty steadily for about a week, but in fairly small quantities.  But last Tuesday, a week ago, her hair began falling out in large chunks.  Pony-tail size chunks.  This is how much fell out in about one hour on Tuesday morning.

    One hour of fall out
  • By Wednesday night, Phenon’s part was strangely wide, and she was starting to get bald spots.  That was exactly enough of that.  She decided it was time to shave her head.  Phenon put her hair in a pony-tail and Tim cut it off.  Then he used barber-style clippers on her head.  This was very unpleasant, as Phenon’s head had been feeling tender and sore for about a week.  But she got through.  She was sad, and cried some throughout this process, but was generally fairly controlled.  Until she looked in the mirror.  I’ve never seen such devastation and anger and dismay in her face.  It was horrible.  There were no words to comfort her, so we just held her until the sobs stopped wracking her body.  Then Phenon got in the shower.  About half-way (this was a serious shower – half-way was about 30 minutes in) through, she started singing.  Then she asked for advice on shaving her head with a safety razor to clean up the stubble that was left.  After an hour, she got out of the shower fairly cheerfully.  Phenon looked in the mirror again and said, very matter-of-factly, “That was a very surprising thing to see.”  Then, “I think I can actually kind of pull this off!  It’s not as bad as I thought it was going to be.”  Within an hour of that, she had posted this picture on facebook.

    Confident self-portrait for the world to see
  • That seems the very definition of resilience to me.  It was awe-inspiring to watch the adaptation and transformation.  She traveled to Hilton Head bald and comfortable in the car.  Outside of the car, she put on a hat.  Phenon’s new wig (from hatswithhair.com– thanks Megan and Aunt Pudgy!) arrived on Friday and she spent most of the rest of the weekend experimenting with hair styles and putting on different hats.  Here is some of the parade.

    Yarn from the donation Maureen secured. Pattern is Twisted Tambini from knitpicks.com. This is the style option for when you're not wearing hair.
  • Same hat, styled for hair, with new wig - hooray!
    Simple green hat with yarn from Chandra and Karen and Zev. Happy self-portrait with new wig.
    Yarn from Maureen, pattern is a modified version of the Rubinette Slouchy Beanie from knitpicks.com. Another happy self-portrait with new wig.
    Phenon wearing a simple hat in yarn from Chandra and Karen and Zev. Tim is getting his nails painted. Rowan and nearly everyone else there did, too.
    Yarn from Maureen. Hat was intended as a simple liner for hats that were too itchy. Turns out it's a great hat on its own!
    This is yarn from Karen and Zev and Chandra. Phenon thought this hat was dumb because it has holes and would look stupid without hair. Today it was the perfect hat because it was the only thing that wasn't too hot. I love being right, especially about knitting.
    Same hat from the back. Just because I think it's pretty. Pattern is Soft Lace Chemo hat from ravelry.com

    Today Phenon spent half of the day comfortably bald in her chair, holding court with different nurses, doctors, and the acupuncture guy.

    Phenon's first (and last?) acupuncture treatment

    When she went into the hallway, she put on her hair, or a hat, or both, but didn’t bother in the room, because it was more important to be a comfortable temperature.  She has decided that losing her hair isn’t such a tragedy.  The worst part of cancer, it turns out, is the nausea.  Or the low neutrophils.  Or a tie between the two.  But the hair?  She can totally rock the bald or the wig, and neither is so scary, after all.

Emergency Preparedness

by Julie
Published on: November 23, 2011
Comments: 10 Comments

There are no current emergencies.  All is well.  In fact, Phenon has been cleared to travel to Hilton Head for Thanksgiving!  We just need to be prepared in case there is an emergency in the few days while we are away.  So, as with any emergency preparedness plan, we have a few things we need to do.

First, we need to know what constitutes an emergency.  This is trickier than you might think.  For example, when Rowan was a newborn and Phenon was about 3, they and their friends all spiked fevers of about 104 degrees.  I thought this was an emergency, but the pediatrician suggested cool wash cloths on their foreheads.  Okaaaay.  Not an emergency.  Now, however, a temperature of 100.1 sustained for an hour results in 48 hours (minimum) inpatient hospitalization.  Yikes.

On the other hand, when we went to the hospital for bloodwork yesterday, Shana mentioned that we were not there to check Phenon’s ANC count, as I had thought, but rather to check her hemoglobin level.  No one had mentioned hemoglobin as a topic of concern before, so I inquired further.  Turns out, we were there because her hemoglobin was too low when she was discharged on Friday.  Naturally, I asked what numbers we were talking about (below 8 is the concerning level, FYI), and what the consequences are to low numbers.  Shana very casually mentioned that a hemoglobin count of 7 would result in a blood transfusion.  Um, what?!?  And, when would that happen?  “You might as well stay today, as long as you’re here.”  So, um, it appears that a blood transfusion is NOT an emergency, and is, rather, an extremely casual, non-worrisome thing.  100.1 temperature = scary emergency, blood transfusion = no big deal.  By the way, her hemoglobin was 9, her ANC was 3,500, and we are going to Hilton Head without need for a very casual blood transfusion.

Second, we need to have a list of Phenon’s medications (and her reactions to them) for the past few months, because emergency people always ask about that.  So, I started putting together a little notebook to carry around that lists her medical history and her medications.  That took, well, more of my life than I expected.  Here is the list of medication Phenon has taken since August (in alphabetical order, so I can find them quickly in the notebook):

  • advair
  • albuterol
  • bactrim (sulfameth)
  • benadryl
  • bleomycin (blenoxane)
  • ceftazadime
  • cyclophosphamide (cytoxan)
  • dilaudid
  • docusate
  • doxorubicin (adriamycin)
  • etopophos (etoposide phosphate)
  • etoposide
  • filgrastim (neulasta)
  • flagyl (metronidazole)
  • granisteron (kytril)
  • lidocaine (antac/diphenhis, magic mouthwash)
  • miralax (polyethylene glycol)
  • morphine
  • motrin (iboprofen)
  • nasonex
  • nystatin
  • percocet (acetaminophen oxycodone)
  • prednisone (methylprednisolone)
  • reglan (meoclopramide)
  • sodium bicarbonate rinse
  • tramadol
  • tylenol (acetaminophen)
  • vincristine (oncovin)
  • zantac
  • zofran (ondansetron)
  • zyrtec

I have dates of administration and reactions to all of these.  I also know that her Port-A-Cath requires a 22 gauge, 3/4 inch Huber needle.  Just so you know.

Third, we need to have a “go bag” packed, in case we need to go to the hospital.  I learned I need to have a go bag packed all the time, not just for this trip.  So, I listed everything we needed last time we were in the hospital, did laundry, and have a go  bag ready now.  We’ll bring it with us, and we’ll keep it in my car all the time when we’re home, just in case.  I got duplicates of some things (like deodorant, and toothpaste, and medicines) just so I can have them ready, and not need to pack or unpack this bag, ever.

Fourth, we need to know where all of the Children’s Hospitals with oncology units are between here and Hilton Head, just in case there’s a problem.  There is one in Savannah, Georgia, that is only about 45 minutes from where we are staying.  There are also ones in North Carolina and South Carolina that are on the way.  Virginia is a children’s oncology wasteland, as far as I can tell, so if something happens in Virginia, we’ll just turn around and come home.  Next on my list is to enter all of the Children’s Hospital locations into my maps app, so I can just click on any of them as we drive, if needed.

Fifth, I suppose I need to actually pack regular things for this regular trip, right?  Regular clothes and toiletries and maybe some entertainment for the car.  I guess a part of emergency preparedness would also be preparedness for the normal.  Planning to have a regular, lovely Thanksgiving dinner with family in a normal house, under normal circumstances.  That may be the hardest part of all of this for me to wrap my head around.  Planning for normal fun!

Happy Thanksgiving to one and all.  I hope we have nothing at all to report until chemo starts up again on Monday.  Have a good weekend, everyone!

P.S.  I may actually post before Monday, about hair…  Phenon’s hair will likely be entirely gone by tonight, if she showers.  She’s decided to shave off the remainder tonight, as she’s starting to get bald patches.  Phenon’s wig is ordered and she’s feeling fine about it.  It is being delivered to Hilton Head (hopefully to arrive by Friday).

 

Out In The World

by Tim
Published on: November 20, 2011
Comments: 11 Comments

It’s been a month since Phenon has been outdoors for anything but going from house to car and car to hospital (the latter of which is in a parking garage so it really doesn’t even count).  So it was a huge milestone that we walked the dogs yesterday.  Even huger(ier) that it was an entire mile!  She seems to feel pretty much like an entirely healthy kid, is eating like crazy, and really enjoying the freedom of not being in the hospital.

After a breakfast of nearly half a potato and snausage quiche made with half-and-half and at least a stick of butter, we ventured out, assuming to make it to the woods entrance a couple of blocks away and then head back for recuperation.  After all, it was only a day after a walk down the hospital hallway completely wiped her out.  By the time we reached our normal turning around spot, Rowan was complaining of hurting feet/ankles/knee/whatever but Phenon was going strong.  It’s not like she was running ahead and yelling at us to catch up or anything, but she was doing great. We stopped and chatted for a bit with Mike and Mayumi who were out walking Dewey.  It felt really good to be out in the world again.

We made it home in time to rest for a few minutes before visits began.

First up was Eve (my lovely co-worker, Creative Director of the amazing Beaconfire) who delivered some really awesome bandanna decorating supplies, bandanas, a canvas bag for decorating, and lip balm from her housemate Kim.  We all spent a few minutes goggling over how much cooler craft supplies are now than when we were kids (I used to have to walk up hill in the snow for a bottle of liquid beads!).  While we hung out and talked with Eve, Aliza arrived for a visit.

I’m not entirely sure what they were up to because they holed up in Phenon’s room while Julie and I chatted with Mike in the living room, but Aliza did emerge with lovely fingernails, so I have my suspicions.  They had to leave much sooner than Phenon wanted so that she could get a little rest before the next visit from Brianna and Griffin.

While the kids did nails and more Julie, Melissa, Laurie, and I (Jean, too, for a while), had some drinks and talked.  It felt great to just be one of the girls again!  It’s really amazing the amount of nail polish Phenon now has.  Add to that the nail pens, stickers, and new techniques, the nail work coming out of that room is really quite a thing to see. I’m sorry I haven’t taken pictures of them all, I’ll try to do better next time/in the future.  Brianna and Phenon did dig in to the bandanna stuff and made some really cool looking things that I did take a picture of.  So here’s that.

By the end of the day, Phenon was commenting on what a great day it was.  She had played on her keyboard, learned new parts of a song (thank you, YouTube), hung out with friends, organized her room, eaten 6 meals, and had no need for anti-nausea medicine.  She was chipper, proud of herself, and full of yummy calories.

The only downside to the day is that, right on the predicted schedule, her hair began falling out in earnest yesterday evening after all of the fun.  She got a little bit of alfredo sauce in her hair, and when she went to clean it off, a big bunch came right out in her hand.  She was terrified and really kind of horrified.  After much upset and soothing, she did recover, and was able to chat again, happily, about how much she enjoyed her day. However, she did ask to go wig shopping today, and is feeling pretty urgent about it. More on that topic (hopefully pictures!) later.

Home and Visitors

by Julie
Published on: November 18, 2011
Comments: 11 Comments

We made it!  Nurse Katelin came through, and we were out of the hospital by 1:00.  My folks were visiting when we got sprung, so they helped us lug all of the stuff (well, most of the stuff, turns out I left a bunch of stuff in the room that I’ll have to go back for later) down to the car.

Phenon made it home with no vomiting.  Hooray!  This was not our expectation, so, you know, BONUS!  Then I got to eat lunch, shower, and pick Rowan up from school.  I feel almost normal.  Or like I’m on a vacation.  Since we got home, Phenon seems to be doing very well, and has been painting her nails using the new newsprint technique she learned yesterday, as well as nail polish markers she got for her birthday (score!  thank you!).

Phenon can’t go back to school on Monday, because although she’s cleared to come home, she’s still neutropenic (remember the medical lesson?  She needs to get above 500 ANC before her immune system is functioning properly again).  School is a germy hotspot, so she can’t go back until she’s above 500, and she won’t get tested again until Tuesday.  Since Wednesday is a 7th grade fieldtrip to the zoo, and there’s no school Thursday and Friday, that means no school next week.  And the following week chemo starts up again.  In the meantime, though, home hospital teaching will start on Monday, so at least there’s that.

As for visitors, Phenon feels like she’ll be ready for visitors by tomorrow (Saturday).  Visitors will have to pardon us for making everyone wash hands and use hand sanitizer on their way in.  Phenon prefers visitors to come in small groups, and we should probably limit visits to 30 minutes to an hour with a rest in between.   Within those parameters, I think we’re good to go.  Can’t wait to see folks – it’s been a lonely, long week!

Woot! 240, Baby!

by Julie
Published on: November 18, 2011
Comments: 9 Comments

ANC = 240 and monocytes = 260 so added together she’s built up to 500. We’re going home!!! I’m sure the paperwork will be here in just a minute…

Waiting is hard work

by Julie
Published on: November 18, 2011
Comments: 3 Comments

Yesterday Phenon’s ANC levels jumped all the way up to… 80.  However, her inpatient attending doc (we refer to him as the “joke of the day doc”) said that if you add in the monocyte count, he would consider her count a 120.  This is kind of tricky math.  The data about the possibility of infection is about the ANC count alone.  But monocytes are also a part of your immune system, so he argued that this does tell you that her immune system is developing more resources.  Doctor jokester said he’d discharge her TODAY if her ANC PLUS monocytes add up to 200.  This is apparently another source of controversy between Joke of the Day doc and our outpatient docs.  Shana said she finds the math a little fishy, but that this is not a HUGE controversy and she wouldn’t go to battle over the disagreement.  But she would rather Phenon stay in the hospital until her ANC is 200.  They drew her blood at 4, and I’m waiting for the results now.  So much hangs on those numbers.

In the meantime, again, there are other things happening.  Joyfully, thankfully, dancingly, typhlitis has been ruled out.  Mouth pain has moved to the forefront, which is called mucositis.  Chemo and neutropenia can apparently result in the break down in the mucous membranes in your mouth (and the rest of your digestive tract, for that matter), causing pain and increased risk for injury and mouth sores.  There are no specific sores yet, but the mouth pain is intense.  The “magic mouthwash” (they actually call it that here) turns out to not be so magic.  It is supposed to numb and clean the mouth.  Phenon has found that it numbs her cheeks pretty well, but her cheeks typically don’t hurt.  It does not numb anything that hurts, which means it’s not worth the nasty taste and texture to use.

I ended up sleeping at home again on Wednesday night, contrary to the plan I posted here, so I returned to the hospital Thursday morning refreshed and determined to get Phenon out of bed.  She had been in bed, not even walking around the room, since Monday.  I figured three walks around the floor might convince her body it was time to get back in gear and start making more neutrophils, right?  I gave her 15 minutes after my arrival to finish up her episode of 30 Rock, and then we were going to par-tay!  She was not impressed.  Nonetheless, the first item on our agenda was a shower.  This was the easiest to motivate her for, but ended up being fairly terrifying.  The plastic protection they put over her port access came loose during the shower, and water and soap went down into the dressing.  Phenon became terrified that meant germs had gotten into the port and she had bought herself more time here, and/or that they would have to remove the port access and re-access her.  We paged the nurse and waited as she panicked inconsolably.  Luckily, none of her fears came true, and all of my reassurances turned out to not be lies (I have to admit, I wasn’t entirely sure she was wrong, but was doggedly soothing her anyway).  All she needed was new dressing.  After that experience, she obviously needed to rest for at least an hour before being forced to walk the floor!

Inevitably, however, the time passed. So around noon, I kicked her out of bed and made her take a walk.  Jean came for a visit and we decided to try to meet her at the elevator.  However, we left too early.  Phenon was able to walk for about 5 minutes before she turned seriously pale and said she was exhausted.  I quickly got her back to the room and into bed.  Jean had to find her own way.  Phenon then slept for at least an hour (busy making neutrophils?  her body saying, “Dude!  We’re out walking!  We must need neutrophils!”) while I visited with Jean.

After Jean left, Phenon and I prepared for our second outing.  Zoe from the teen room had come by and invited us to a fingernail painting party at 3:30.  Oh ho ho!  This was not an activity Phenon could easily reject!  Well played, Zoe!  So, walk number two was to the teen room.  They were doing water swirl painting, which Phenon turned out to be the room expert on (this obviously felt good – so much praise over something unrelated to bravery, cancer, or physiological functions!  hooray!).  They also transferred newsprint to fingernails.  This was new to Phenon, and was effective and fun.  She hung in there for an hour and a half!

By the time we returned to the room, the dinner cart had arrived, filling the halls with that nasty cafeteria smell.  Nail polish smell blended in, then a tech to check her vitals who was wearing perfume (how is this not forbidden on the chemo floor?), and then administration of the antibiotic that causes a foul smell/taste at the back of her throat (she describes it as tasting like there is a piece of rotting broccoli stuck at the back of her mouth – and, yes, you’re welcome for that image).  She felt horrible.  Shana decided to try a different approach on the anti-nausea meds.  She said that Phenon is seeming so much better than when she arrived, but since her progress does not seem to be due to the effectiveness of the anti-nausea medicines, she wanted to keep messing with them.  She said that this was mostly for the sake of her next round of chemo.  She wants to start that round knowing exactly which medicines help, and in what combinations so we can nip this in the bud.  So they doubled one medicine and switched another.  Doubling the one medicine (Reglan) had unfortunate results, however.  Phenon developed a side effect called akathesia for us to enjoy for the early evening.  Akathesia seems kind of like a restless leg syndrome on steroids.  It causes this internal sense of agitation and a profound need to move your legs (and a little bit your arms), plus heightened anxiety, and a sense of desperation and discomfort.  As it began, I took Phenon for walk number three, hoping we could walk out some of the agitation (this has helped some for some of my therapy clients who have been on medicines that cause that side effect).  Alas, she didn’t have the energy to walk for long enough, and the agitation increased when we got to the room.  Doctor Mike (I almost checked his ID – no WAY he looks 21, much less old enough to have finished medical school!!) decided to add benadryl to the regimen, which means essentially sedating her.

Because of the timing of the medicines, she may likely sleep until noon now.  (Making neutrophils?  Just saying, seems like a good opportunity!  Could I knit a few?)

The other issue that has been going on simultaneously and I just haven’t written about is nutrition.  Phenon has now lost 11 pounds since October.  She’s right at the 10th percentile for her BMI (Body Mass Index).  No pressure or anything, but kids between the 10th and 85th percentiles respond well to chemo.  Those that are above or below that range have more chemo complications AND the chemo is less effective.  Not like the stakes are high or anything.  So, the docs sent the floor dietitian (Brittany) to me on Wednesday, and she met with me for 45 minutes to discuss strategies to get Phenon above the 10th percentile.  Unfortunately, I had already tried all but two strategies, to little avail (actually, maybe that’s what kept her at the 10th instead of the 9th percentile?).  Right now, the main strategy is massive anti-nausea meds and bland foods to keep her stomach from rejecting the food.  But as soon as she can hold food down, they want me to slam as much fat and protein into this kid as will fit.  We are talking whole milk yogurt with cream on top, haagen daas ice cream, protein powder, using cream instead of milk, lots of butter, and whatever else we can get in there.  They also gave me a shake mix to try that has SIX HUNDRED calories in a single cup.  Please note, however, before we are innundated with a generous flood of desserts to fatten her up, the rest of us in the house are NOT in danger of wasting away.  And we are good and moral people who do not want to waste food that others so lovingly prepared, so we eat, you know, as a kindness to others.  🙂  While Phenon needs a new wardrobe because her clothes are getting too big, the rest of us need new wardrobes from all of the hospital sitting and dessert eating.  So, there’s that.  Just saying.

Off now, to harass again for those lab results.

Learning The Parameters

by Julie
Published on: November 16, 2011
Comments: 18 Comments

Sometimes it’s very hard to write a blog post, especially when it involves a lot of detailed terminology but not a lot of answers.  But here we go.  I’ll wager that you may be qualified to go to medical school by the end of this post.

So, Tim posted about neutropenia the other day.  Neutropenia is determined by checking ANC levels – ANC stands for Absolute Neutrophil Counts.  Neutrophils are a subtype of white blood cells, and they are your body’s first line of defense in fighting infection.  Nurse Allison reports that the average ANC they expect to see would be about 6,000 (Medicine.net reports that counts from 1500 to 8000 are considered normal).  Chemo kills cancer cells but also your neutrophils, and this is why they give the colony stimulating factor shot during chemo (which I posted about over the weekend) – this shot encourages your bone marrow to make a bunch more neutrophils.  If your ANC falls below 500, you are considered neutropenic, which means that your body can’t fight off infections and you are in danger of very serious infections that your body is usually able to fight off with ease.

Alright, so enough of the general lesson.  Phenon’s ANC on Monday morning was 8,800 – above the average range, likely due to the inclusion of steroids in her chemo regimen.  But the steroids ended Sunday night.  Monday afternoon, Phenon got a low grade fever, felt extremely weak and shaky, and was unable to hold down any food.  A low grade fever (100.1 to 100.9) sustained for one hour buys you a 48 hour hospitalization. We got to the hospital at 5:45, and saw Phenon’s fellow (Payal).  She assured us that it was EXTREMELY unlikely that Phenon was neutropenic because her ANC had been so incredibly high that morning.  Oh, if only.  The ED lab results came back, and Phenon’s ANC had dropped to 250.  This is apparently an incredibly rare single day drop.  Our girl is once again unique and outstanding. (Ahem – might I suggest that you be boring, for once, my girl?  Just a suggestion.)  Anyway, since we weren’t admitted to the oncology floor until about 1am Monday/Tuesday, the earliest possible discharge is 1am Wednesday/Thursday.  But seriously, we all know they’re not going to discharge us at 1am, regardless of the circumstances, right.  So, realistically, the best case scenario would be discharge by noonish on Thursday.

Phenon’s attending doctor (Shana) said that what they need to see for discharge is a steady climb in ANC levels – they can be as low as 200 for discharge, as long as they are climbing.   When they re-tested her on Tuesday morning, they had dropped further, to 60.  I just now got today’s results – they have climbed to… (drum roll):  70.  Sigh.  That’s not climbing enough.  This makes is unlikely she will be discharged before Friday.  (I’m not feeling super optimistic about Friday at this point, but maybe that’s my defeated attitude this morning…)

In the meantime, there are other things happening.  When they did a “smear” (looking a Phenon’s blood sample, smeared on a slide, under a microscope), the few white blood cells she had showed signs that they were working hard to fight off an infection.  So, the hypothesis is not just that she’s neutropenic, but that she has something that her immune system is trying to fight with very few resources.

The doctors disagree about what this infection might be.  We are witnessing a power struggle and “polite debates” between doctors from different parts of the oncology floor, and I am finding them incredibly entertaining – like watching a soap opera, except with important outcomes.  The attending and resident for the inpatient unit think that she might have typhilitis.  This is a very very scary infection that it is important to kill right away because it is bad.  Google searches on this infection make me feel sick to my stomach and a deep kind of terror.  They are treating her with massive amounts of antibiotics to kill this and other related types of infections that can infect the gastro-intestinal tract.

They are also giving her a broad spectrum antibiotic to kill any other possible infections.  On the other hand, her usual doctors (Shana and Payal) do not think she has any symptoms of typhlitis, and think that what the inpatient docs are interpreting as stomach pain is actually a problem with listening skills – they think that Phenon is reporting discomfort in her stomach only when it is being pressed on hard by the many people obsessively checking her stomach.  She does not have any pain in her stomach when it is not being pressed on.  They are obviously having all of these discussions politely, but the undercurrents we are watching are really entertaining for a psychologist looking for a good distraction from the helplessness of not being able to stop my child’s suffering.  If her “symptoms” of typhlitis increase, she will require more xrays and CT scans in addition to the constant flow of antibiotics.  If they do not, she keeps getting the antibiotics, but then gets sprung from the hospital when her ANC levels show progress.

Because of this mess, Phenon has not been able to eat.  When she shows she can hold down clear liquids, they authorize her to try bland solids.  Then she eats bland solids, feels AWESOME for about an hour, and then feels horrid for about an hour, then vomits it all back up.  When she can’t eat, she feels hungry and MISERABLE and angry.  There’s been lots of anger and lots of outrage.  When she starts to feel sick after eating, there’s misery and hopelessness and a sense of outrage that she feels bad when she doesn’t eat and feels bad when she does.  They’ve stepped up the anti-nausea medicines like crazy, but with sadly limited results.  She’s tired of feeling like crap.

So now we sit.  Phenon has been invited to the teen room for a Harry Potter marathon, but was unable to go because she was vomiting yesterday.  The teen room person (another Zoe!) brought her movies 2 and 3 (Phenon asked to start at number 2) to watch in the room yesterday.  The art room art therapist also came in yesterday to invite Phenon in and to offer her art materials for bringing to the room.  Phenon rejected those options – no interest at all.  Child Life also came by and offered entertainment options.  Phenon rejected those too, but did talk to the Child Life specialist (I can’t believe I don’t remember her name!) about both Harry Potter and the Hunger Games, which the Child Life specialist is reading right now.  The music therapist just left for a conference, but we witnessed her working with occupational therapists in the hallway yesterday helping a girl re-learn how to walk after brain surgery.  The music therapist was playing guitar to help set a rhythm for taking steps.  Children’s really is an exceptional, amazing place that works HARD to help youth deal with this misery in a resilience-promoting way.

I slept at home last night.  Rowan missed school Monday and Tuesday not feeling well.  He went to the doctor yesterday, and though there were not clear signs of either pink eye or strep or any other bacterial infection, they decided to treat him with antibiotics and eye drops to be sure there were no infections in the house.  My mom came over this morning to spend the day at home with him, but at the last minute, he opted to go to school after all.  (He’s been on 24 hours of antibiotics, so he’s not contagious, if he ever was, but I decided to let him stay home if he felt the need for a break and some extra TLC.)  I’m going to make some calls to see if he can have a play date with someone this afternoon, then Tim will pick him up and spend the evening and night with him.  I’m back in the hospital today.

While Phenon sleeps, I’m writing this post, then finishing up the grading and paperwork I need to do in order to officially hand over my classes to the long-term substitutes they found for me.  I have been insufficiently gushing in this forum for the incredible bosses I have at both of my jobs.  Both have generously offered me long-term leave that I don’t actually have at either job, and both have held my jobs for me to return to when this is done.  Neither is obligated to do that.  Both have also been incredibly compassionate, and warm, and generous with their time and understanding throughout this process.  That’s what you get for working for psychologists, I guess, but I still feel incredibly, incredibly lucky.

Phenon has also been assigned her teacher for home-hospital teaching.  But her teacher can’t come to the hospital this week because it is outside of the county.  This is frustrating.  But, Bobby and Tania are coming today to get her started on Spanish tutoring, so at least she can start catching up on that.  Everything else will have to wait a little while, it seems.

And that, I suppose, is that. I imagine that this post may leave you, dear reader, feeling exhausted.  Perhaps head swimming with details about ANC levels, thyphlitis versus not, hospital drama, and thoughts of what counts as bland food.  Or maybe I’m projecting what’s in my head.

 

 

Back In The Hospital

by Tim
Published on: November 14, 2011
Comments: 7 Comments

As is common with chemotherapy patients, Phenon is back for a brief stay in the hospital. She had a low grade fever for an hour and that means back for tests to see if she has an infection; An obvious side effect of treatments that weaken your immune system.

Best case scenario is she gets some antibiotics and comes home tonight.  Less best is a night or two in the hospital while they get things under control.

Julie took the her down to Children’s a couple of house ago and I’ll update again when I hear what’s going on. 

Disappointment

by Julie
Published on: November 13, 2011
Comments: 11 Comments

I think we haven’t posted in a few days because we were hoping we’d be posting about something else.  About how her will of steel helped her overcome the crap.  Alas.

On Friday, Phenon went for her Growth Stimulating Factor shot.  (Chemo kills the cancer cells, but also the white blood cells in your body that are responsible for fighting off infection.  Towards the end of the chemo round, they give you a shot to encourage your bone marrow to produce massive amounts of new white blood cells so your body can recover more quickly.  I need to ask why they do this on Day 4 or Day 5 instead of Day 9, because I can’t explain to you why they do that just before they do another day of chemo on Monday.)  Her fabulous pediatrician, Dr. Weich, agreed to administer the shot at the pediatrician’s office so that she wouldn’t have to become an inpatient at Children’s to do it (the outpatient oncology clinic was closed for Veteran’s Day).  After she got the shot, we had to hang out for 20 minutes to make sure that she didn’t have an allergic reaction to it.  Dr. Weich hung out with us for the whole 20 minutes to help us pass the time (he figured she had enough boredom and sitting around time at the hospital).  Turns out, Dr. Weich is a huge musical theater guy – he conducts orchestras for musical theater and sometimes plays keyboard for musicals.  Also, his mostly grown kids do set design, acting, and play musical instruments.  He was interesting, and interested, and very kind.  He is also a cancer survivor, and was lovely and empathic about how much the next several months is truly going to suck, but how she’s going to have it behind her soon.

After that, we went to a department store.  Seriously.  This is what I’ll do for my chemo-getting daughter, go to a department store.  Phenon was profoundly determined to go to her dear friend’s bat mitzvah on Saturday.  And she needed an appropriate dress.  Unfortunately, the stuff that actually was her size was too baby-ish.  In fact, she’s lost 8 pounds since all of this began, and even the baby-ish stuff was a little too big too.  And the stuff in the junior section that she actually liked hung off of her like dress-up clothes.  It was frustrating and sad, and went on too long but she didn’t want to admit that she was worn out.  By the time we got home, she was on the verge of vomiting.  She took some anti-nausea medication and I gave her a foot massage (this has been able to hold off vomiting for a while sometimes).  Then she slept for hours and hours and hours.  Bobby and Tania and Fiona and Kayla came over for a visit and to give Phenon some fabulous home-made t-shirts (F U Cancer and Et Tu Hodgkin?).  But Phenon couldn’t get out of bed or sit up because if she did she would vomit and she was working really hard to avoid that.  She was really sad to have missed the visit (but loved the shirts!).  When she was able to sit up for dinner, she vomited for a really long time.  Nonetheless, she asked me to call her friend Sarah (who is similar in size and taste) and see if she might have a dress she could borrow for Saturday.  The anti-nausea medicine was not very effective but eventually the vomiting stopped and she was able to fall asleep for the night.  After she fell asleep, Sarah’s mom came over with several dress options for Phenon to try for Saturday.

Unfortunately, Saturday morning it all began again.  Phenon woke up at 5:45 ready to vomit.  She took the anti-nausea medicine (plus antibiotics and steroids, which is the weekend chemo regimen continued).  This held the vomiting off until 6:45.  She was unable to eat anything, because of the frequent vomiting, until about 3 in the afternoon.  But eventually the vomiting did stop.  And she started to get ready for the bat mitzvah.  She made her friend a card, got the present ready, was finally able to stand up for long enough to try on the dresses, and picked a fabulous one that fit perfectly.  Then she ate a little bit so she would have the energy to get through both the car ride and the party.  She tried the ginger candy that Laurie brought too, and it seemed to help a little bit.  And then she took a shower, which may have been the big mistake, because that took all of the energy she had left for the day.  We knew the shower would take a good deal of energy, so she took it early enough that she could take a nap afterwards.  And she did, but then she woke up sick again.  She got increasingly upset about how sick she felt, because it was becoming more and more clear that the bat mitzvah was unlikely.  But still, Phenon was determined to show up for her friend, even if just for a short time.  Unfortunately, she wasn’t able to sit up long enough to pull it off.  She tried and tried and tried, but just couldn’t do it.  And she was so disappointed and so sad and so angry that all of the sickness had to kick in on THAT day, the only one for which she had plans that she cared about.  The event was at 6:30, and she tried from 3:00 to 7:30 to get herself ready to do it.  She couldn’t accept that she wasn’t going until about 8:00.  She was able to eat some soup broth and a half of an inarizushi roll at 7:30, but then had to curl up around a vomit bucket for the rest of the night.

She woke up feeling sick during the night, and Tim was apparently a super-star and handled that all himself.  I missed all of it through very sound sleep and had no idea anything was happening.  At 5:30 this morning, she woke up feeling horrid again, and now I’m on duty while Tim sleeps the night off.  Phenon has had about and eighth of a fruit and ice cream smoothie she asked for, and is now curled up feeling awful again.

We really do all know that she’s going to be fine.  And we really are all grateful for all that the chemo is doing for her.  But I’m afraid there’s going to be an awful lot of disappointment, and sadness, and anger, and general shitty feelings between now and when the chemo has done its job.

Make-up Day

by Tim
Published on: November 10, 2011
Comments: 11 Comments

Today Phenon and I went down to the hospital early so that she could get a dose of etoposide phosphate to make up for the etoposide (not phosphate) that she had the allergic reaction to and, therefore, did not actually get.  Things could really not have gone more smoothly. We got down there in good time and didn’t wait more than fifteen minutes before they called us back.  Totally different than yesterday’s debacle.

I joked that I was just charmed.  A joke that Julie found less than funny after she drove down later in the afternoon to pick up a prescription that we had to have today that never showed.  She waited an hour or so after they said it would be there and then drove home while the hospital pharmacy sent someone to our house to hand-deliver the goods.  It was really nice of them, but I’m definitely done commenting about how smooth the morning was.  Or suggesting that I’m somehow just lucky.

Mostly what Phenon did today was sleep.  She slept while the chemo was administered and then again after we got home for more than three hours until Julie got home.  Then she woke up, vomited for a while and we had a nice family dinner and watched Glee.  We all agreed that this latest episode was not very good but that it was very interesing how teenagers all seem to go through the same things at the same time as each other on Glee.  This was the week when they all decide whether to have sex or not.

Anyway…all-in-all a pretty decent day.  However, Phenon’s stomach is more frequently feeling just BAD, and her mouth has a constant burning sensation that we suspect could possibly be the beginnings of thrush.  Tomorrow Phenon goes to her pediatrician (no hospital!!) for a shot of colony stimulating factor (to promote the growth of new white blood cells), and then it’s just prednisone pills for the next three days until one more half day (well, it’s Julie that’s on duty that day, so half-day, whole-day, in-patient hospitalization, well just have to wait and see) in the clinic for some more of the nasty shit and then NO TREATMENTS FOR 13 DAYS!!!!!!

And then it all starts over again.

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