Phenon Updates archive

Author : Julie (47)

Love and Thanks

by Julie
Published on: January 4, 2012
Comments: 4 Comments

We are really a bit a-flutter.  You all have consistently, brilliantly, and impressively risen far above the call of duty to astound us with your love and support.  I’m touched and tearful at the generosity of our supporters.  Many of you have contributed more, despite having already provided us with more support, tangible assistance, and love than one could possibly expect or hope for.  We are so grateful to you.

We are also grateful to lots of strangers.  Here’s the thing:  of the 49 donations we had received by 8pm on Wednesday, 29 have come from people WE DON’T KNOW.  That’s 59% of the people that have donated.  These donations came because the people we do know have forwarded our requests through their networks, and those people have forwarded our request to their networks.  The donations from kind and generous strangers have ranged in size from $7 to $200.  And we have received help from all over the U.S., as well as Canada, Surinam, and Ireland.  These donations are, of course, a clear indication of the generosity of kind people.  But they also seem like indications of how much YOU are loved.  You posted on your facebook pages, and on your blogs, and on your listservs, and on e-mails.  You asked them to send us help and you asked them to forward the message.  And they did both of those things, because you asked them to.  They must really love you.  We love you too.  And now we love them too.

We cannot wait to pay this generosity and beauty and massive expression of love forward.

P.S.  We are writing thank you’s for every contribution, but we are slower than the rate of contributions.  In the meantime, please know that we thank you.

Help

by Julie
Published on: January 2, 2012
Comments: 6 Comments

Happy New Year! We are so grateful to you for your support!

UPDATE: We have reached our goal!!!

Phenon is doing better, thanks, in large part to all of your help.  Many of you have asked how you can help and encouraged us to be honest in our answer.  Although it is difficult for us to ask, we could really use your help with financial contributions to meet the expenses of Phenon’s care.  We estimate $8,000 in medical bills. We are doing all we can, but as you know, I’ve been unemployed since Phenon’s diagnosis and we are not able to meet all of our mounting expenses.  If you can help out, please send a contribution:

  1. Click the payment button below to send money through Paypal[paypal-donation]
  2. Go to https://www.paypal.com , click on “Send Money” and then enter my email address: phenonemom@gmail.com
  3. Or send a check payable to “Julie Murphy or Tim Arnold”
    10614 Glenwild Road
    Silver Spring, MD 20901

Thank you so much for considering helping. If you know of anyone else who may be interested in helping, please forward this link to them (you can also send them to http://www.phenon.com).

Here’s to a cancer free 2012!!

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She did it!

by Julie
Published on: December 28, 2011
Comments: 6 Comments

I wasn’t sure she was gonna, but Phenon made it through Christimas, Tim’s birthday, and the last chemo day of Round 3 without being hospitalized (poo poo poo, knock on wood, etc.).  She did not feel awesome, but she made it through every scheduled family party (which is a lot), plus the Muppet Movie, plus an extra family visit that was not even previously scheduled (yay for spontaneous visits from the North Carolina cousins!).  Yesterday (Tuesday) was her last chemo day of Round 3, and it lasted a very, very long time.  But her labs at the beginning of the appointment looked good, so she was not yet neutropenic.  I watched her turn neutropenic before my eyes at 8:30 last night.  I could almost see the little neutrophils croaking as she spoke.  She drooped, and slouched, and her eyes got puffy, and she went to bed early.  As the night progressed, her temperature rose, as did my anxiety level.  We took her temperature every half hour, and she ranged from 99.9 to 100.3 (remember, the critical level is 100.4 or higher for an hour).  By 2am, she dropped down to 99.5 and I decided to let it go, and just let us sleep.  She was headed in the right direction, and if she got worse she would announce it loudly and clearly.  So, Phenon slept until about 8am, at which time she was a kick-ass 98.3 degrees.  So, she’s gotten through.   Happy new year to one and all!

Knocked Down

by Julie
Published on: December 22, 2011
Comments: 11 Comments

I have been tremendously buoyed by the PET/CT results, and have felt like all the shit of chemo is worth it for the stupid cancer to get dead.  Phenon was also happy and fascinated by the PET/CT results, but I think maybe that was on more of an intellectual level.  She is unimpressed by the chemo, and would like to avoid it as much as possible. There have been many attempts at bargaining this week.  For example, “If I broke both of my legs, they’d probably postpone, or come to our house to do it instead of making us go to the hospital, right?”  (When Tim pointed out that this would likely cause her to become an inpatient and still get chemo, she was not amused.)

Round 3 has been pretty rough.  She feels exhausted, and sick to her stomach, and wrong in her skin.  She’s starving (thanks, steroids) and the smell of everything makes her want to vomit (thanks, other chemo meds).  She’s back to being unable to concentrate on anything other than junky magazines and goofy novels that she can finish in a few hours.  Even those became too much for her to manage today.  Yesterday Phenon slept nearly 18 hours, waking up only to express her significant discomfort.  Her words get a little slurred when she feels this badly, so talking becomes a chore.  Even music gets to be too much sometimes, and she just needs to stare into the silence.

When I think about it, Round 1 occurred after essentially three weeks of hospitalization, pain, discomfort, fear, and shock.  Then Round 1 was a miserable nightmare of side effects and general yuckiness.  When Round 2 began, her expectations were pretty low.  But the new medicines really helped a lot, and she bounced back very quickly.  So quickly, in fact, that she was able to go to school for 1-1/2 weeks (hooray!).  I think that she felt normal.  Except for the part where doing her hair meant putting it on the table in front of her, I really do think “normal” and “good” are the right descriptors.  Perhaps even better than before, given all that extra lung space that she clearly hasn’t had in a very long time.  I kind of thought all of that goodness would make her more tolerant of the chemo this time around.  It sucks, but how great have the results been?!?  But, I’m afraid, the effect has been the opposite.  I think that feeling so well over the past week and a half made her realize what she’s missing when the chemo kicks in.  Just how incredibly awful she really feels.

Nonetheless, it’s clear that she’s grateful for everyone who is supporting her.  Phenon has been participating in a wellness study at the hsopital, to examine the physical, emotional, and social impact of chemotherapy on teens.  And she noted to me that she has marked “no” to any signs of depression, or anxiety, or sense of isolation.  She remarked how the only symptoms she has endorsed have been physical – fatigue, nausea, weakness, and so on.  Phenon, in her wisdom, said she thought the study was limited, because it didn’t ask enough about her support system.  She thinks the reason she has been doing so well is because of her friends and support system.  Phenon hypothesized that youth who don’t have enough friends, or whose friends are upset when they aren’t able to show up to things, or who have trouble understanding what’s happening, are probably the ones who have the hardest time emotionally.  She very clearly made the link between all of the texts / phone calls / cards / gifts / visits / kindness / love she has received and her ability to do well emotionally and socially throughout this process.  She feels like shit – there’s no mistaking that.  But she also feels lucky to have the incredible people in her life that she has.  I’ve always thought that picking good people to be a part of her life was one of Phenon’s super-powers (disorganization is another super-power, but we need not address that now, right?).  This trial has reinforced my belief in her super-powers.  Y’all are good friends.  Thanks.

Happy holidays to all of our loved ones.  And cheers to a new year dawning, with health for all.

Lovely. And then Remarkably Unpleasant.

by Julie
Published on: December 14, 2011
Comments: 12 Comments

Phenon has had a lovely week. She started with a half day of school last Wednesday, which was her first time in the school building since October 19th. She did great (though she slept immediately upon getting home, and then got sick that night). Nonetheless, that kid is fiercely determined. And she made it through full days on Thursday and Friday!

Not to say it wasn’t complicated. Phenon has required a 504 Plan to allow her to have accommodations that are needed (for example, extra time on tests and assignments, permission to wear a hat to school, access to the health room without having to explain or justify, etc.). She’s also had to drop two classes, add one, and become an aid to the counseling department to make up for an extra elective that she couldn’t cover. Home-hospital teaching is in addition to her school day now, so figuring out how that works when she’s actually going to school during the day but is still working on assignments for the many weeks before this has been less than simple. But it’s all working out.

Phenon’s counselor is amazing and has gone way above the call of duty to figure out how to make this crazy amalgamation work. Her teachers (almost all of them, anyway) have been warm, and helpful, and kind. Her principal has also gone above and beyond the call, with personal phone calls and giving Phenon’s friends “hat passes” for last week so Phenon wouldn’t stick out like a sore thumb as the only kid wearing a hat (because you’re not allowed to wear a hat to school, ever). Her home-hospital teacher, Ms. Johnson, has also been really helpful and flexible and warm and shared her own experience of doing home-hospital teaching while going through chemo when she was younger. I can’t even begin to imagine how Phenon could have better academic and emotional support getting back to school.

Phenon also went to school on Monday, and then again today, and plans to go for the rest of the week. On Monday, she also participated in her Winter Choral Concert, which was amazing to see. The concert happened to be at the same place that she had a chorus concert on October 19th, so I had little heart palpitations as I walked into the building, but all went beautifully. The choral program at her school is amazing, and has been astonishingly supportive of my girl. I’m now a loyal fan forever and ever. Her chorus has been accepted to a national choral competition in Dallas at the end of February, and Phenon is absolutely on schedule to go with the Chamber Choir.  Hooray!

So, all of that has been profoundly lovely. She’s been doing great. It’s been clear that she will recover from all of this far, far faster than I will. She’s trotting off to school and outings with friends now with aplomb, while I quake in my boots and obsess about percentages and stats and germs and allergies and food intake and fatigue and on and on and on. But, I work hard not to share these worries on a regular basis, and try to act just as casual as she is about heading in to school. I wake up at 2:53am each day with a fresh wave of worries, but now that I’ve got a little spare time during the day because she’s at school, I can just nap, right? Yeah. Well. Despite my own personal challenges, though, Phenon is really and truly doing great. If you ran into her, you wouldn’t know anything had ever been wrong. She seems that good.

Of course, there has to be a hiccup here and there, right? The PET/CT scan on Tuesday was that. Although I’ve been convinced that all of Children’s has some kind of litmus test about staff bedside manners, radiology (and, of course, surgery) is a glaring exception to this rule. I’m actually going to file a formal complaint. PET scans are just generally a drag. It’s not traumatizing. It’s not dramatically hideous. But it is remarkably unpleasant. We started with a very warm and friendly staff member who did the intake paperwork. But then the nurse had to put in two different IV lines, and was terribly uncommunicative about why and what was happening, despite my best efforts at advocacy and gentle (and then annoyed) questioning. Every injection Phenon got that day hurt horribly – gasping, cringing, wide-eyed pain each time, which is incredibly unusual for her. When we commented on that, each staff member acted like she was just overly sensitive and complain-y, despite my advocacy and my insistence that this isn’t normal. She’s genuinely experiencing pain she shouldn’t be.

It turned out that there was a crimp in the line in her vein – so the line did a little dogleg thing inside her vein, and that’s what was causing all that pain.  They didn’t notice till they took it out.  Then they were all astonished that she really WAS hurting more than she should have been!  (Grrr, aaargh.)  And there was a dearth of information about what was happening and what would come next. They injected Phenon with the contrast fluid for the CT scan with no warning and no preparation for the effects of that. Luckily, since Phenon had a CT scan before ever starting this process, she was prepared extensively for that by the community lab. Just for your own education, and just in case you ever need a CT scan yourself, and you end up with a dickhead an uncommunicative technician, when you are injected with the contrast fluid, the following usually happens:

  • your ears get very hot
  • you get strangely warm all over, in kind of a wave (this apparently feels akin to menopause)
  • your stomach feels a little unsettled or queasy
  • you feel like you’ve just peed all over the table

Wait – what was that last one?  That seems important to warn a kid (or adult) about, right?  At her very first CT, the technician told Phenon she would feel like she had just peed all over the place. She assured Phenon that she would not ACTUALLY pee on the table. She also said, “You won’t believe me. You’ll need to check for yourself, and then you’ll feel surprised that you really didn’t, because the feeling is THAT convincing.” When Phenon came out of that first scan, she wide-eyed-ly explained that the tech was exactly right. This time the feeling was exactly the same, but they didn’t warn her when they did it, and they didn’t explain a thing about what she would feel, how long she’d be in the damn machine (hours), and what they were looking for. I had to force every last bit of information out of them.  I can’t imagine how terrifying it would have been to her if this had been the first time.  But it wasn’t, so it was unpleasant and I was annoyed, but she really was okay.

And then they were all casual about how she was now totally radioactive, and she can’t be around other people because she could harm them and electrical/medical equipment because she’s so radioactive. And as for me, who would be with her all day? “I wouldn’t worry about it.” Oh. You wouldn’t?

Anyway, the bottom line is it was fine. Remarkably unpleasant, yes. But not a huge deal in the grand scheme. We will not have any results of the scan at least until Monday. The goal of the PET and CT are to see what the chemo is doing to the tumor. If the chemo is working its magic, we continue on the same course. If it isn’t working as well as they want, we will need to change to a more aggressive treatment course. Again, no pressure, right? I’m thinking it’s a good thing I attended a continuing education conference (required for my psychology license) last Friday on the topic of deep relaxation in the face of stress. I can manage until Monday with ease now! Ahem.

Despite all of this, it seemed pretty clear that we were going to get through the week without a single emergency. Then our little dog (Allegra) vomited blood and gore from my waist to my toes – so, in my mind, ALL OVER ME – at 3:45 this morning. We spent the wee hours in the emergency room and she’s been at the vet all day for IV fluids and observation. She’ll either come home tonight around 8pm or stay overnight. Since my cousin Erin’s dog has lymphoma and is going through chemo at the same time as Phenon, I was profoundly terrified that our puppy had lymphoma and that I was going to just collapse under the weight of cancer in 2011. But there is a limit, and Allegra just has an ulcer. She’s going to be fine. Some remarkably unpleasant times ahead for her and us, but she’s going to be just fine.

And now I think I’ll collapse in a puddle. Happy 15th Anniversary, Tim! Instead of us going out on a date tonight, we’re planning on pizza in front of the tv at home as I fall asleep on the sofa.  But we will toast to health and lots and lots and lots of sleep!

Phenon is doing _i_e

by Julie
Published on: December 1, 2011
Comments: 8 Comments

It’s kind of hard to describe how Phenon has been doing this week, so I haven’t attempted it so far.  But I can feel the hours that go by without a blog post, and I figure I’ve got about three more hours before I start getting texts and e-mails asking how Phenon is doing in Round 2!  🙂  So, I decided to make an attempt at describing it.

First, though, a little background.  My mom has a strong dislike for words that fit the model of _i_e (blank-eye-blank-eee) – that is, fine or nice.  When she models a new item of clothing or presents you with a meal, _i_e words are forbidden, because they are mostly filler words that convey very little.  You have to pick something more descriptive.  You really have to commit to good or to bad.  Unfortunately, and I’m sorry mom, the only word I can think of to describe how Phenon is doing right now is “fine-ish.”  She’s neither good nor bad.

Monday was very long, and Phenon did not feel great, but she didn’t feel horrible, either.  This is similar to her experience during round 1, so I think it’s pretty reliable.  Phenon described discomfort in her stomach, but did not need an “emesis basin” (vomit bucket) at all.  She ate dinner with us, and though she felt picky about what she was eating and slumped in her chair for most of the meal, she did alright.

Chemo on Tuesday was shorter – we were free by noon.  But Phenon’s stomach felt BAD.  This is when I learned the finer point of the medications that we have been calling “anti-nausea” medicines.  Although this is what the doctors and nurses have been calling them, these medicines are actually anti-emetics, which means they are designed to stop vomiting.  Usually this means that you don’t feel nausea as well, but that has not been the case for Phenon.  She has felt lots and lots of nausea this week.  The smell and taste she experiences when they inject saline solution (when they “flush” her IV line in between medicines) and heparin (what they inject into her port at the end of the day to prevent blood clots in her port) seem amplified compared to her previous experience.  She is describing very heightened sensitivity to smells and tastes, and they are increasing her nausea.  (The parking garage at Children’s seems set up to torture her, as is the smell of the upholstery in my car.)  During Phenon’s last hospitalization, she was using a tube of mint lifesavers to counteract the smell of medicines, but that wasn’t quite strong enough.  So, in preparation for this week I bought some essential oils and some little tupperware-ish cups that I stuffed with cotton balls and drops of essential oils (one peppermint, one vanilla).  The vanilla was a flop – just smells like vanilla extract (don’t know why I didn’t think to just use THAT, would have been much cheaper!!) and is kind of an alcohol-ish bad smell.  But peppermint worked for a while.  However, it’s a bit too strong, so Phenon is back to holding spearmint lifesavers under her nose during line flushes.  Anyway, she spent most of the afternoon and evening in bed.  Again, however, she was able to pull of eating dinner and watching a show, which was nice.

By Wednesday, the aromatherapy was intolerable, and the lifesavers were insufficient, so when they flushed her line the smell was so bad that she instantly vomited up all of her hot chocolate from the morning.  She felt awful throughout the treatment, and held the emesis bag by her side for the hours that we were there.  But, we got to leave by noon, and Phenon had an intense craving for Ethiopian food (kik alecha, to be more precise) on the way home.  The steroids she is on as part of her treatment seem to be causing a really crappy mix of challenges – she is getting a kind of gnawing, angry, insistent hunger while simultaneously feeling on the verge of vomiting.  She feels both desperate to eat and horrified by the idea of eating.  This combination is just MEAN.  So when we left the hospital, Phenon felt desperate to eat Ethiopian food.  Nothing else sounded remotely tolerable.  As someone who has vomited a lot (my pregnancy with Phenon was dramatically puke-y one), Ethiopian seemed a good bet because it’s already pureed, and the injera is very soft and smooshy.  So, we stopped at Langano’s on the way home (I generally prefer other Ethiopian restaurants in Silver Spring, but this is Phenon’s favorit kik alecha, hands down).  Unfortunately, this was a super heart burn-y meal.  I also felt it for hours afterwards, so it’s hard to say whether Phenon’s misery and discomfort yesterday were an effect of the poor lunch decision or because of the chemo.  She was in bed moaning for most of the rest of the day yesterday.  Her conservatory class was last night, and she was not able to go – unlike the Wednesday in Round 1. I gave her all of the heartburn medicine that was permitted, and this eventually seemed to help some.  Again, picky about dinner, but able to pull off a family dinner and a tv show.

Today has been pretty good.  It felt like a vacation day because we didn’t have to venture to the hospital.  All Phenon needed (aside from taking steroids and anti-emetics) was her colony stimulating factor shot (neulasta).  Roxanne, our exceptionally helpful friend/neighbor who has coordinated a helping hands calendar, is also an R.N. and very kindly agreed to give Phenon her shot so that we didn’t have to travel to the hospital (which is feeling frighteningly germy these days).  But the shot was sent to us in asinine packaging that was designed to eat up parts of my “vacation” day and to piss me off.  Roxanne is infinitely resourceful, however, which matches our experience of nurses throughout this crazy-ass experience.  She found a work-around and was able to give Phenon her shot after all, even though the pharmacy and the manufacturer said it was impossible and that we would just have to go to the hospital.  Phenon ate a mild lunch, and apparently played on the computer all afternoon – I say “apparently” because I missed it.  I fell asleep on the sofa and slept for THREE hours.  Luckily, I woke up in time to pick up Rowan from school!  Phenon seems almost normal right now.  Em and Danie stopped by for a short visit, and she didn’t seem sick or uncomfortable in any way.  I went back through this blog, and vomiting was clearly intensifying by this point in the process during Round 1.  So, I’m feeling optimistic, though my pessimistic side is kicking me for jinxing the goodness by feeling optimistic!  Maybe these new medications are going to keep things from sliding downhill over the next few days.  Maybe she’ll continue to feel fine (yes, yes, _i_e, I know) over the weekend, and Monday will run smoothly and uneventfully.  And neutropenia will be a one-time fluke that only happened with Round 1.  Right?  Easy breezy?

My dogs are feeling a little tense right now, because I keep knocking on wood after each sentence.  There’s no one at the door, guys.  It’s just my optimism and my realism and my pessimism having a little superstitious battle.

 

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).

 

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…

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