Phenon Updates

Phenon DID go to Conservatory last night. She made it through the whole 2-1/2 hour class! Her teacher came out with her at the end and said she did great and to keep talking through the whole thing so they can tell if she’s on the right track. She also said she’d decided to treat Phenon like everything was normal so she could have one place in the world where no one was talking about her being sick. This seems like a great call to me, and Phenon said she had fun and was really glad she went. Her teachers offered to Skype or video any classes she’ll have to miss. We said good-bye, got in the car, and Phenon vomited the entire way home. She still doesn’t regret going and I don’t regret taking her. I think she’s starting to find her own definition of her strength. Friends plus music plus acting = ability to delay inevitable vomiting. Duly noted. Rock on, baby girl. Your knowledge of your power is just beginning, but I think you’ll find that you’re a force to be contended with. Love you, sweetness.

Quite reasonably, Phenon pretty adamantly did not want to go to the hospital this morning.  No food sounded good, all clothes were too uncomfortable, and of course the fear that if she went she’d end up as an inpatient AGAIN.  She very clearly stated that accessing her port is painful, even with numbing cream, and that the medicine scheduled for today is scary.  And none of these are arguments that can be countered.  Indeed, they are all evidence that she’s really quite bright.  Nonetheless, we got our asses out the door.

Our appointment was scheduled to last 1 to 2 hours.  Payal assured us this is the short day of chemo, and we’d be out on time for a nice early lunch.  We arrived at 8:45 for our 9:00 appointment.  We were taken back for port access at 10:00 (turns out 2-1/2 hours of numbing cream is a pretty decent thing).  Pre-meds to fight nausea, allergic reactions, and fevers administered around 11:15.  Chemo began at 12:15.  Only minor sneezing ensued, and while her stomach was definitively upset, there was no actual vomiting.  We were finished and checked out by 2:15, plenty of time to pick up Rowan from school, as planned (lunch be damned).  Then there was the quagmire in the parking garage – that lasted another 20 minutes.  We were late for getting Rowan, but Megan was an outstanding emergency stand-in.  Thanks!  Overall, I’m beginning to understand hospital calculus.  A 1 to 2 hour appointment means we should allow 7 hours (including commute).  That makes total sense when you look at our 6 to 8 hour appointment that took 14 hours and resulting in admission as an inpatient.

Phenon is still feeling alright, so she’s thinking about going to conservatory (musical theater class) tonight.  I’m going to go with her, and I’ll wait there to make sure she can leave quick if she’s got a need to.  Then tomorrow she has to go in for an unplanned additional day of chemo.  They’re going to give her the additional dose of etoposide phosphate that she missed on Monday due to the not breathing and all of that minor stuff that interfered that day.  So, planning on another 7 hours tomorrow (because, again, we were assured it would be an easy 1 to 2 hour appointment).

I’m also trying to adjust to the very strange intimacy of the infusion pod situation.  The place where you get your chemo is this cluster of four semi-rooms around a nurse’s station.  Each patient gets a 2-1/2 walled room, with a curtain to close the gap.  This gives you a lovely illusion of semi-privacy.  Of course, there is no actual privacy.  Phenon seems quite aware of this, and talks little and very quietly when we are there.  Other families do not have the same reaction.  As a result, you are somehow immersed in other people’s parenting and choices. And it’s intimate and invasive and embarrassing and scary sometimes.  The kid next to us today looked to be about 10-ish.  He vomited for several hours, and was screaming with fear or anger or sadness for much of the time.  His parents were kind and calming, but did not sound alarmed or stressed about his hours of vomiting.  I found this to be almost more disheartening, because this must happen to him every time.  Imagine how hard it must be to get him out of the house to come to the hospital.  In the waiting room, there was a family that was quite different than that.  That mom was angry with her 12-month-old appearing child, and kept telling him he was rude and annoying, and he should just shut up and watch television.  Cancer and blood disorders don’t pick families that can handle them.  They just happen.  Imagine the additional trauma to a family with so many fewer resources and supports than we have.  Again with the disconcerting sense of fear/overwhelm combined with the gratefulness all at once.

And with that, a belated thanks to my mom for covering several of my obligations for several hours on very late notice yesterday.  And for dinner last night.  Tomorrow we’ll get up and do it all again.  One foot in front of the other.

Yes, and she was eating pizza while the chemo was going in.

No really…Sneezes. That was her response to today’s re-adminstering of a slightly altered version of the thing that made her body glow beet red and try to stop breathing yesterday. Sneezes. Now don’t get me wrong, there were lots of sneezes for probably about thirty minutes. Then sniffles and some of that “I can tell something is bothering you” kind of stuffed nose sound to her voice for another hour.

But that was it.

Things got off to a late start because the Hospital Pharmacy needed to track down this variant of etoposide that they ended up having in house (yay). And then they had to give Phenon IV Tylenol, Benadryl, Zofran, and Prednisone before the dose of Doxorubicin (which she also had yesterday) and then the dreaded Etoposide (actually Etoposide Phosophate, its water soluble cousin) because, you see, this is the lighter day of treatment. It’s really astonishing to think of the number of medicines that have been pumped into our girl in the last three weeks.

I know things may not stay this way, and the part of this that’s proving to be much harder than we expected is the logistics; the scheduling; the having a life that is not entirely consumed by Phenon’s treatments.  But so far, her reaction to the chemo has been great, and for that we are completely thankful.

Did I mention that our pregnant nurse was not allowed to actually handle this bag of shit?

Here is video of the awesome flash mob that descended on our house on Phenon’s birthday.  Julie described it in an earlier post.  Thanks a million to Ben for getting the sound levels good and posting the video!

The 21-day chemo schedule looks like this:

Day 1: Etoposide, Doxorubicin, Bleomycin, Vincristine, Cytoxan, Prednisone

Day 2: Etoposide, Doxorubicin, Prednisone

Day 3: Etoposide, Prednisone

Day 4: Prednisone, Colony Stimulating Factors

Day 5: Prednisone

Day 6: Prednisone

Day 7: Prednisone

Day 8: Bleomycin, Vincristine

Days 9-21: Nothing.

Up at 4am thinking about the schedule of etoposide first three days in a row.  Looking forward to hearing what the plan will be from here.

Phenon had a terrifying allergic reaction to the last chemo medicine – etoposide.  This is not a common one to have an allergic reaction to, so they didn’t do a test dose like they did with the bleomycin.  I had just left to go home to Rowan, when Tim called and said, “Get back here NOW.”  I got back on the elevator, ran all the way to her room to find her blue (Tim didn’t see any blue, just a red rash all over her face, neck and chest), with six medical professionals around her.  They sucked the medicine and blood back out of her port, and then put in benadryl until she was better.  Now she’s just on fluids.

Before that, she had been vomiting in reaction to the cytoxan (toxan, not toxin, but seriously, very small diff).  Rowan is now with Lisa’s family.  We are waiting for the attending to come in and talk to us.  Our inpatient nurse, Alison, totally just advocated for us in a huge way.  The attending apparently ordered a re-administration of the etoposide, just at a slower rate (which apparently sometimes reduces reactivity), and Alison told her she would have to come in and get consent from both of us.  Thank you, Alison.

Today just flat out sucks.

Tim’s report:

It was really fast.  Less than five minutes after they hooked up the etoposide drip Phenon looked at me kind of strangely and said “I feel funny.”  By the time I grabbed the vomit bag she was saying holding her throat saying that she couldn’t breathe.  Alison and I sat her up and put her arms above her head.  I basically panicked while Alison ran to the hallway to call for help.  By the time five other people got to the room, I’d called Julie and Alison was pushing Benadryl.  Within moments, the rash was fading and Phenon was obviously going to be fine.  Oh, so THAT’s what terror feels like.  Really, I thought I’d already felt it earlier, but I guess there’s always more terror.

Sigh.  Because of the need for test doses, which were apparently forgotten in the calculations of the length of stay today, we are now scheduled to be here well past midnight.  Thus, we’ve just been admitted for an overnight stay.  At the same time, some nausea is starting to kick in.  Right now, Phenon thinks it is due to the smell of cleanser in the room we’ve just entered.  But the timing also matches the beginning of the next medicine (which has the word TOXIN in its name.  Seriously.).

To minimize disruptions to Rowan’s morning, Tim and I are switching shifts and I’ll be headed home to Rowan soon.  Tim may be in for a long night.

It’s 3:45.  Phenon’s first chemo began at 3:43.  As usual, it’s the logistics that have bitten us in the butt.  Apparently the scheduling office messed up big time by scheduling her first appointment at 11am.  And there’s a holiday on Friday, so they are trying to jam everyone for today AND Friday into one day.  We checked in at 10:15, were seen for vitals at 11:45, accessed the port and hooked up to fluids at 12:30, did fluids until 3:00, used the restroom (waaaaaaaaay down the hall), ate lunch, and checked and re-checked each chemo vial against her arm band until just now.  The first medicine is red.  It’s the one that will definitely turn her pee red, but may also turn her sweat and tears red.  She does not like the way it looks in the IV, so she is studiously avoiding looking to the right.  The rest of the infusions will take until 9 or 10 tonight.  They have offered us an overnight stay because that may be too late to drive home.  Right now she has requested to go home to sleep in her bed.  The docs have agreed to leave that decision open, so if we change our minds, we can stay, but if we want to, we can go.  Chemo day #2 will start at 9am tomorrow.  Tomorrow should be only 3-4 hours, and should run more smoothly.

In the meantime, we were breathless this morning at the thoughfulness of the Moore family.  When I went to take out the trash, there was a new lunch box filled with snacks and lunch-y things from the Moore’s with an extra sweet card filled with love.  And then Cristela arrived to clean our house, thanks to Courtney and Dave and Chapin and Ray and Laurie.  The head oncology doc today got teary at the amount of love we are receiving, and begged for a copy of the flash mob video.  You, our treasured community, are making a hell of an impression here.

And I’ve finished two hats so far this morning, and am working on the third.  Despite the logistical frustrations, all is well here so far.  And now to begin.

It’s all right, folks, I don’t need a sleep-deprivation intervention.  I know it’s still the beginning of November.  But I’m experiencing such a profound sense of thankfulness that I’ve decided to declare today Thanksgiving.  The past few days have been overwhelming in the demonstration of support and love and helpfulness from the people in our little world.  I am absolutely certain that I am going to neglect to mention some incredible generosity and thoughtfulness, and I apologize.  But I’ve been grateful for all of it.  What follows is a VERY long post in which I attempt to fill in the gaps from the non-posting days.

We got home from the hospital the night before Phenon’s birthday.  A delicious baked ziti (which all four of us loved – what are the chance of that?  [slim, actually]) and cookies were delivered to us for dinner (thanks Crystal!).  But Phenon was feeling pretty low.  As we were leaving, hospital staff kept asking her about her plans for her birthday, and she kept mumbling, “I don’t know.”  We couldn’t get her to think about a plan for celebrating her birthday.  In part, I think, this was self-defense.  So many disappointments, and so many times she got so close to leaving the hospital and then something else would come up.  I think she didn’t want to plan anything so she wouldn’t be devastated.  So, we had a low key birthday.  She woke up in the morning and got the present that Tim and I gave her.  Then she rested for a while.  Then Tim took her in to school to surprise her friends.  While she was in the hospital, a group of girls was going into the school counselor’s office at lunch time and together they were calling Phenon so they could still have lunch together.  Phenon decided to show up for that call instead.  Ms. Jimenez (the counselor) was in on the surprise, and brought a decorated giant chocolate chip cookie in for everyone to celebrate.  We had a little hiccup with a missed voice mail message, so the lunch group wasn’t as big as planned, but Phenon and the girls who could come had a fun time.  Then Phenon came home and rested.  The mail brought a ukelele (seriously!!) from Gerald, that was such a thoughtful and generous gift that made Phenon so unbelievably excited.

Now that's a lot of balloons!

After school, Rowan gave her his present, which she really loved.  And then she rested some more.  My folks (Grammy & Papito) then came with carryout from Palais de Lune (one of Phenon’s favorite restaurants).  But before we sat down for dinner, Megan knocked on the door asking Phenon to put on a coat and shoes and come outside for a surprise.  That took a minute, because Phenon was moving slow, but out she went.  Instantly a group of screaming people ran down the sidewalk and into our front yard.  We had been flash mobbed.  A group of parents stood by the sidelines filming while a group of kids and several dear moms danced and sang their hearts out for Phenon.  Megan managed to blend together people from Phenon’s elementary school, swim team, neighborhood, and middle school.  I can’t imagine how much work it took to coordinate all those groups of people. Ben is editing a video of the grand event and promised to send it our way when it’s done.  I’ll post it here.  In the meantime, you need to know that that mob was full of love and joy and fun and made it clear to everyone that Phenon has a group of people that love her profoundly. Then they all ran back up the hill and dispersed.  Except a few stragglers who really just wanted to say something in person to Phenon on her birthday, and folks who delivered a room full of balloons to her for cheering.

Stephanie and Kristen made this. Slushied!

In the meantime, Stephanie and Kristen came to the door with the most amazing birthday cake I’ve ever seen or tasted.  They took a Glee theme and worked it.  I’m afraid they’ll have to watch me carefully next year.  I may be prone to breaking my hands just before birthday time so they’ll offer to make us a cake again!    Their generosity took my breath away because not only was it a fancy and complicated cake (I believe the icing was lemon mascarpone and the decorating job was impeccable) but it was also Stephanie’s birthday, when someone else should have been doing the baking for her. Phenon had trouble eating much dinner, and didn’t want to have the cake when she wasn’t hungry, so she asked to save the cake for later.  Though I was sobbing inside because it looked so yummy, I agreed.

Bobby, Tania, Fiona, and Kayla came and had some dinner as well, and visited for a little while.  And flowers and balloons arrived from Chapin and Ray and Lily and Nate.  Phenon fell asleep knowing she was well loved.

The next morning we forced Phenon to think about inviting some friends over on Saturday to celebrate her birthday.  She rejected most of our ideas, but agreed to invite some friends over for pizza, cake, fondue, and a movie.  She was pretty sure no one would be able to come since she was inviting them the day before the plan, but I think finally gave up resisting us and agreed to try.

Am I the only one who thinks "Star Trek" transporter when looking at this picture?

Then it was time for Phenon’s pulmonary function test (lung functioning) back at Children’s.  It was a grueling two hours.  Phenon did some breathing tests just sitting in a chair, but for most of it she had to sit in this crazy sealed tube.  The pictures don’t do it justice.  You know when you go to the old fashioned drive-through at the bank and get that tube to put your checks in?  Those pneumatic tube devices are a smaller version of what she was sitting in.  The doc completely exhausted her lung capacity as far as I could tell, and Phenon fell asleep in the car on the way home. By the way, for those who have been asking, we have only preliminary results from the slew of recent tests, and expect more detailed results later.  But, for now, the bone marrow biopsy is tentatively clean, the PET scan and CT scan tentatively showed nothing new, and the pulmonary function test fell within the expected range for Phenon working basically off of 1-1/3 lungs.

Phenon woke up in time to request lunch at Ruan Thai and to run an errand.  Phenon read and took a nap while my dad mowed and raked our lawn.  She also got an e-mail from Judah Friedlander (actor on 30 Rock), wishing her happy birthday and a fast recovery.  How cool is that?  (Judah went to school with me in Gaithersburg, and is a kind and thoughtful person who was generous with his time!) Then I picked up Rowan, and napped with Phenon.  I woke up to Megan and Molly and Roxanne and Tatiana and Katya dropping off a double dinner.  Not only had Mary made us a vegetarian lasagna, bread, and salad, but Roxanne had made very fancy fresh fruit bowls, and another family had given them vegetarian barbecue and collard greens (from Soul Vegetarian) to bring.  We don’t know who that additional meal was from, but it was delicious, and we thank you.  Talk about feeling the love!  Roxanne has been using her organizational talents to put together a Helping Hands calendar for us that has resulted in our home being taken care of in a manner that it is unaccustomed to, and us having more home-cooked meals in a week than we usually would make!  And as if Megan hadn’t done enough already what with all of the flash mob organizing and taking care of Rowan for most of the time that we were in the hospital (plus her crazy full-time job and dealing with a-hole neighborhood bullies), she also dropped off a lovely present for Phenon.  Sheesh!

Tim got home from his first day back at work, and we all watched a movie together until we fell asleep.  The next morning almost seemed normal.  No doctor appointments, Phenon slept all the way through the night without pain or sickness, and I slept in until 9:00.  Phenon had planned to get her hair dyed pink at 9:45 Saturday morning, but had a late change of heart.  She decided that she would probably really like her hair dyed again, and thought that might make it more painful when her hair falls out (expected fall out date, around 11/20/11).  So, we canceled the appointment at the last minute (sorry Hugo Salon!).

Phenon really wasn’t feeling well, so she laid around reading and dozing for most of the morning.  Her cough is back, which we all find much more upsetting, now that we know what a**hole thing is causing it.  She seemed extremely demoralized.  So, I jumped into action and forced her to clean her room to get ready for having some friends over.  I know, I’m such a jerk for forcing my sick kid to clean!  Phenon and Tim were certain my cleaning/organizing assignment was totally impossible – to unpack the bags from the hospital that were full of gifts from friends and family, and incorporate them into her room.  Taking away her cancer without having to go through chemo, I feel hopeless in the face of that.  But cleaning her room?  Please!  THAT we can conquer.  And while cleaning and having success, she perked up to seem only mildly ill.  I’ll avoid saying “I told you so!”  See how well I avoided saying that?

Then Phenon’s friends showed up to celebrate her birthday.  We had been thinking about a nice quiet evening at home, but forgot who was coming.  It was nice.  It was not quiet.  And Phenon got to have a group of friends sing her happy birthday, and got to show off her amazing cake, and got to open presents, and watch a movie, and seem completely NORMAL for a while.  In fact, if you had asked me to go into that room and pick out which kid had been in the hospital for two weeks and which one had cancer, I wouldn’t have been able to do it.  She seemed completely and totally like herself.  And that, my friends, is the lesson I’m taking away from all of this.  Without her dear friends and the dear parents of her friends, Phenon is sick and disabled and demoralized.  With them, she is cheerful, and energetic, and excited, and well.  Brace yourselves, people.  A string of invitations for visits and game-playing at our house may be on the way soon.

Phew!  That brings us to today.  We got up this morning to the joy of an extra hour of weekend, and the four of us watched Captain America together.  I finished Phenon’s first hat. And then I got to open the huge box of yarn that arrived (thank you, Chandra and Karen and Zev!)  And I made a (dreaded) to do list for everyone.  Now that I know that housework and chores make Phenon feel BETTER, you see…    Later on today, Courtney and David are going to visit.  I may go out for mango margaritas with some mamas.  And we’ll enjoy the rest of the weekend.  Then tomorrow is chemo day #1.  We have to arrive at the hospital at 10:30.  Phenon’s appointment is at 11:00.  They said to expect 6 to 8 hours on this first day.

We used to have our Ancestor Feast every October/November to celebrate our family heritage and to make sure we were building a tight-knit community of mutual support to ensure a strong family moving forward.  I am now considering that community built.  And a total work of art.  Thanks everyone, for all of the ways you’ve been helping us out, big and small.

I’m back at the office today so this is going to be really short, I just didn’t want another day to go by without some info.

We didn’t update yesterday because it was Phenon’s birthday and we were kind of busy most of the day.  I took her to lunch at school to hang out with a few friends and then we came home and she crashed out for a couple of hours.  There’s also a lot to say about some pretty amazing things that folks did for our girl on her birthday but that, too, will have to wait just a bit.

Julie and Phenon are at the hospital right now doing some Pulmonary function tests in preparation for chemo to start on Monday.  Julie will probably post someting about that this evening.