Phenon Updates archive

Date : March 2012 (4)

Ringing the Bell

by Tim
Published on: March 30, 2012
Comments: 10 Comments

Monday was Phenon’s last day of treatment at the fabulous University of Maryland Medical Center.  Rowan and I joined Julie for the special event and loved meeting all the amazing people who have been taking care of our girl for the past three weeks.

On the last day of treatment they call a “Pediatric Code Sunshine” over the PA system and doctors, nurses, and techs who are available come out to the radiation waiting area where the newly former patient rings a bell signifying the end of treatment.  I wish my phone could manage to get the sound and video a bit more in sync, but fortunately I’m swinging the damn thing around so much that mostly you can’t tell who’s saying what, when, anyhow:

httpvh://www.youtube.com/watch?v=m2z1ZOqVYh0

Then there were hugs all around and that was that: Treatment is done.

httpvh://www.youtube.com/watch?v=zLNVyFfHN24

 

Finish line

by Julie
Published on: March 23, 2012
Comments: 7 Comments

Phenon’s last radiation treatment is Monday, March 26th.  Only one to go!  When she is done, she will ring this bell.  We have seen several others get to ring this bell.  It’s a happy thing!  All of the radiation technologists gather round, and cheer wildly as the (now-former) patient rings the bell.  Then they hug and congratulate and send the patient on his or her way.  They do helpful rituals very well in Baltimore.  For kids, there’s one more step.  After ringing the bell, “Princess Jill” will meet Phenon at the “Magic Castle” to grant one of her wishes.  We had a little trouble finding the Magic Castle at first, but we found it under the glass stairway into the atrium that is the waiting room for Radiation Oncology.

I wanted to invite a bunch of people to come and cheer as Phenon walks out of cancer treatment and officially pronounces cancer defeated, but she was adamantly disinterested in such an embarrassing opportunity to be the center of attention.  She very much wants to have a big party to celebrate the end, but she absolutely does not want it to happen in the lobby of the radiation oncology department at University of Maryland.  And much as I’d like to make it into a big-ol’ hulabaloo, the kid has earned the right to celebrate in her own way and on her terms!

Phenon will still have some medical stuff to take care of in the next few months: another CT scan to see whether radiation has shrunk the remaining mass (it may have been killed but not shrunk, which is okay), an ultrasound of her heart to be sure that chemo hasn’t caused too much damage, surgery to remove her port-a-cath, and check-ups every six months (for the rest of her life) after all is said and done to monitor for recurrence.  Even though that list seems kind of long when I type it all out like that, it seems like small potatoes compared to chemo and radiation.

In other news, I have amazing parents.  (Wait, everyone already knows that!  I guess this doesn’t count as news, in that case?)  Tim’s car has long had a DNR (Do Not Resuscitate) order, but we’ve been fixing it anyway, so it would continue to hobble along.  The engine light has been on almost as long as we can remember, but this week it started making an ominous rattling sound.  Not good.  But my parents have come to rescue! To keep us from having the stress of figuring out how to manage with one car, they have stepped in and financed a new car for us.  They have been helping us all along, but this big burst of help and generosity at the end of this terrible journey is above and beyond, and we are so, so grateful.

It is beginning to look like there could be a restful night in our near future.

Finally, I’m going to leave you with a playlist.  Radiation can take a while, and they don’t want you to be bored and uncomfortable as you are strapped (and head-locked) to the table.  So, you’re allowed to bring in your own music.  This is Phenon’s playlist that she listens to as she’s going through radiation.

  • Marry the Night (Lady Gaga)
  • Rumour Has It (Adele)
  • Distance (Christina Perri)
  • Alice (Avril Lavigne) This one sounds like an anthem for getting through radiation to me!
    Arms (Christina Perri)
  • Blackbird (The Beatles)
  • Someone Like You (Adele)
  • Penguin (Christina Perri)
  • Uptown Girl (Glee Cast Version)
  • Set Fire to the Rain (Adele)
  • The Edge of Glory (Lady Gaga)
  • Sad Song (Christina Perri)
  • Rolling in the Deep (Adele)

The staff play this music loud for Phenon.  Even with the thick, radiation repelling door closed, you can hear her music blasting down the hall.  It’s almost like it’s all been a f**k cancer party, all along!

 

 

Radiation underway

by Julie
Published on: March 7, 2012
Comments: 6 Comments

Radiation began Monday, and we think it’s going to be fine.  The staff are amazingly solicitous and lovely, and they provide lots of candy for each accomplished event.  Seriously.  Last night, three different staff members ran to Phenon with tootsie pops after radiation was finished.  Then a fourth asked her about her favorite kind of candy.  Phenon had a very difficult time thinking of a favorite, but was pushed and pushed, so finally she said, “Reese’s peanut butter cups.”  The technician exclaimed, “Yay!” and ran away, only to return moments later with the very same.  My goodness.  There will be no problem with weight loss during radiation!

The first night of radiation was an ordeal.  They were having problems with their computer, and the lining up of Phenon with the xray on which they made the radiation plan. See the laser levelers like you use to hang a picture in your house?  That’s what all the flourescent pink lights in this picture are:

They kept having to tilt the table, or the cushion she was on, by one millimeter at a time, and then the stupid computer would re-set the original settings and they would have to start over.  So her half-hour appointment turned into three full hours.  This would not have been a big deal, because the staff are fun (and, don’t forget, they bring candy to EVERYTHING), and they play music throughout, and generally try to make radiation as much of a party as they can.  However, to get Phenon’s head positioned properly, she has to wear a mask.  And that mask was jamming the head “cushion” into the back of her head for more than an hour.  And it gave her a horrible, terrible, no-good, rotten headache.

To me, this mask looks horribly clausterphobic, but Phenon said it doesn’t bother her and it’s generally comfortable.  For a few minutes.  But the mask does leave funny marks on your face and head, just so you know.

They also have to draw lines on you in sharpie to make sure they are sending radiation to the EXACT right spot.  Good thing it was wacky day at school on Tuesday – that’s how she explained the sharpie lines she couldn’t get off with alcohol.


The lines on her throat are special.  They are to line up the block over her vocal cords.  Originally, Dr. Talk told us it wasn’t an option to cover Phenon’s vocal cords for the radiation because you have lymph nodes right behind your vocal cords that you want to hit with the radiation.  If you cover the vocal cords, you increase the chances that the cancer comes back there in a more aggressive, bad-ass fashion.  But we pushed and pushed on that, because he also indicated that radiation can cause permanent damage to your voice.  We were agonizing over the thought of damaging her voice forever (some reports I read on the, ahem, internet, indicated discomfort in speaking voice that happened after talking for just a few minutes) only to learn in 10 years that radiation was unnecessary for people in Phenon’s position.  That was intolerable.  So, we kept pushing.  Finally, Dr. Talk came to a compromise.  They do radiation from the front and the back of her body, so they decided to shield her vocal cords from the front, but still do radiation from the back – that way they can hit the lymph nodes that are behind the vocal cords, and thus NOT increase her risk of the worse cancer coming back there.  Her vocal cords will still get radiation, but only very small amounts, which should end up making no detectable difference in her voice.

In the end, Phenon got through the first night of radiation, but it was worse than she had hoped for.  But the actual treatment was not painful, and we were able to get home by 8:30pm.  At which point I promptly passed out on the sofa.

The second night, WE were the problem.  We had a series of minor delays that added up to a major delay getting to the hospital (for example, Phenon spilled apple juice all over her clothes so badly that we had to stop and get her new clothes!).  But the staff were accommodating and kind (didn’t seem to reduce the candy offerings at all!), and the treatment took only about 30 minutes this time.  They said it should genuinely be 15 minutes by the time they get the routine down, hopefully by the end of the week.

Phenon has radiation every weekday until March 26, which is the last day of treatment.  Really, really, really looking forward to that.

In other news, the Make-A-Wish team came to our house on Sunday afternoon.  This was very exciting.  We got the sofas cleaned so our little dog’s bladder issues wouldn’t be so obvious and the MAW team would have someplace pee-free to sit!  The team (Linda and Tina) were lovely, and came bearing presents for both Phenon and Rowan.  They had a nice long chat with the us, and Phenon settled on a request for a Royal Caribbean cruise on the Oasis of the Seas boat (zipline on board!  Teen “neighborhood”!) to the Western Caribbean (Mexico, Jamaica, Haiti).  Day trips to Mayan ruins, swimming with dolphins/sea lions/turtles/horses, snorkeling, glass-bottomed boats, and a helicopter ride for an aerial photography session.  Plus, Phenon added on a request for an extra day in Florida at the beginning or end to see our friend Janet’s art studio and to visit with Don and Janet.  Hooray!  They also asked her to make a back-up wish, so she pushed for a week at the beach with her 9 closest friends (plus one for Rowan), even though bringing friends along is against the rules.  We pushed for additional adult chaperones if that’s the wish they make an exception for and grant it.  It is NOT my wish to be alone at the beach with 10 teenage girls and 2 pre-teen boys.  Seriously.

Finally, the chamber choir website has some audio of the Dallas performance accompanied by a slide show of the trip.  Phenon had a great time!

 

Radiation begins Monday

by Julie
Published on: March 3, 2012
Comments: 2 Comments

What a difference a second opinion makes!  It took a little while, because we were trying to arrange for a consultation with Children’s Hospital of Philadelphia from a distance.  Since a physical exam with Phenon yields exactly NO information, we didn’t want to take any more leave time and make the day-trip if we didn’t have to.  I was hoping to arrange for them to just look at her PET/CT scans and tell us what treatment plan they would recommend.  Turns out the health care system is profoundly inflexible (gasp from shock!).  I knew insurance wouldn’t cover the visit if the doctor didn’t physically meet Phenon, so we were hoping to just pay out of pocket for a consultation.  But there isn’t even an internal hospital billing mechanism for a doctor to do a consultation without actually meeting with the patient.  This was frustrating, time-consuming to discover, and annoying.  Shana urged us to let this go, and do our second opinion with Dr. Young Kwok at University of Maryland Medical Center in Baltimore.  She told us that he has lots of pediatric experience, and is talented and trustworthy and has come from a different training philosophy than Dr. Dritschilo, so it would be worth getting his perspective.

First a slight aside – our friend Chandra dubbed Dr. Dritschilo “Dr. Mustache.”  Our friend Lisa dubbed him “Supermario.”  When Dr. Kwok’s resident asked the name of the first opinion doctor, those were the only two names I could remember!  I had to text Tim and ask him to text me Dr. Mustache’s real name! So embarrassing!

Anyway, go visit Dr. Kwok we did.  This is him (current picture, as far as I can tell).  Whereas Supermario was fairly close-lipped and “not the world’s greatest communicator,” Dr. Kwok talked and talked and talked and talked.  He talked about the unlikely success of a career in music and lectured Phenon for a LONG time about alternate career options.  He also discussed the importance of the specifics in taking care of her health and breasts in her 20’s, then how it would be different in her 30’s, and then how it would be different in her 40’s, and then how it would be different in her 50’s.  Our 1 hour appointment took 2-1/2 hours – and not because of hospital math or a long time in the waiting room.  Nonetheless, he answered all of our questions, and was very familiar with the research.  And his treatment plan recommendation was EXACTLY THE SAME as the one proposed by Dr. Mustache.  Shana strongly concurred with both recommendations, and feels that the plan is sound.  The plan is to do low-dose radiation (21 Gray or 21Gy) to the full original affected area (neck, clavicle, right lung), and slightly higher dose (24Gy) to the remaining mass.  Dr. Mustache was very squirrely about specifics with us, but got very specific on the phone with Shana – thus, while he said to us that he could go as high as 36Gy, he told Shana that he would not go higher than 24Gy.  This is really important, since 30Gy causes spine damage and would likely cause her spine to stop growing.  Since Phenon is, ahem, somewhat smaller than her friends:

Phenon with good friends. Phenon is the oldest. Phenon's friends are not unusually gigantic!

Growth, therefore, is actually really important.  In the end, everyone agrees, and that makes me feel better.  But the Baltimore doctor did earn the nickname “Dr. Talk” from us.

Given that both radiation oncologists left a little bit to be desired in the bedside manner department, how did we then pick which place to go?  It was EASY, actually.  Although it is only 11 miles from our house to Dr. Mustache’s office, it took a full 50 minutes in what I would consider “moderate” city traffic.  It is 39 miles from our house to Dr. Talk’s office, but it only took us 42 minutes in “typical” traffic on that route.

Also, Georgetown’s radiation department is in a dank, depressing basement area that is clearly designed for adults.  They treated Phenon like an overly needy adult.  They were shocked by her resistance to the painful tattoos.  Since our last post and during follow-up questions, they told us that they see approximately 8 pediatric oncology patients per year.  They were friendly, but clearly not so awesome with kids.

At Baltimore, the radiation department waiting room is in an atrium with palm trees and lots of natural light.  See?  They haven’t done tattoos in 15 years – they just use permanent

radiation waiting room

marker, which they refresh as needed.  Why?  Because they don’t see any need to cause a kid pain unnecessarily.  They see 3-4 pediatric patients per month.  When it was time for her CT/simulation of radiation, they walked me right into the room with Phenon and pointed me to the parent chair.  (This is a major contrast with our experience at Georgetown.)  They also have a program called “Magic Castle” in which they give each pediatric patient a big present when they finish radiation, so they have something to look forward to as things get tough.  They rejected Phenon’s list – the stuff on it wasn’t expensive enough.  I know all this stuff is trivial compared to the competence of the doctors and the reputation of the facility, but given the equality of those two things, this place was far better with kids, was more physically pleasant, and Phenon was delighted with them.  She said she was looking forward to going there for several weeks.  So, like I said, it was an easy decision.

Phenon begins radiation this coming Monday, March 5th.  The long-term side effects are bad, but they will be the same no matter where we go. In the meantime, Phenon enjoyed her trip to Dallas with Chamber Choir.  Much to my tremendous relief, she had no incidents going through security from the D.C. end.  In Texas, they apparently gave her a bit of a hard time, patting down her hat pretty extensively, and painting her hands with explosive detector chemicals.  But, the most important thing was that they did not force her to take her hat/wig off in front of the security line, and no private hairless security scan was deemed necessary.  Phew!  And now we are very happy to have her back home with us!

Since her return, Phenon has been very focused on finalizing her wish trip fantasy for Make-a-Wish.  They come to interview us tomorrow (Sunday), and Phenon could not be more excited.  Since finding out that she cannot bring friends along for her wish (her longest-standing wish was to bring her 10 closest friends to the beach with us for a week for the fun and as a thank you for the unbelievable level of support they have provided), she has struggled to come up with a vacation magical enough to keep a hold on her.  She has narrowed it down to someplace warm and tropical (sorry London and Ireland, which were high on MY list), and possibly a cruise.  Last night she found a cruise that has lots of musical theater on board, and makes day trips to various islands in the Bahamas.  She has also considered a cruise from Canada to Hawaii with day trips there.  We’ll keep you posted, and keep those wonderful vacation ideas coming! (Though you should be aware that anything that has a flavor of being immersed in a culture that does not speak English and having “adventures” seems to sound like too much work for her right now…)

In other news, our friend Beth posted an article that I found really compelling.  The author talks about being a cancer “veteran,” and the emotional complications that come with ending treatment.  I thought it was interesting that Phenon expressed some of these thoughts almost immediately upon finishing chemo – particularly the ones about missing the nurses and doctors at Children’s Hospital, since she saw them more days than not for three months.  How will we find out how nurse Stephanie’s wedding went?  Is nurse Jen (from Canada) terribly disappointed in our American winter this year?  When will we get to see Shana and Payal and nurse Molly again?  Some of the other concerns described in the article seem more adult and long-term focused and I don’t think they apply to Phenon.  But I think they do apply to, for example, the parents of a child ending cancer treatment.  I just thought it was interesting food for thought, and I’m grateful Beth posted it.

Beth has also contributed to our cancer experience by her celebration of the cancer presents she received during her own treatment for (non-Hodgkins) lymphoma over the past (too many) months.  And we wanted to brag for a minute, because we just received one of the best cancer presents EVER – Alison, Gillian, and their girl scout daughters went together and brought us a box containing littler boxes inside.  They gave us one box each of every kind of girl scout cookie that exists.  Now, how thoughtful is that?!?  A short-lived present, but a truly grand gesture for which we are incredibly grateful!  Oh, how we love Girl Scouts!

Finally, we had interesting medical news from Tim last night – he has mono!  He denies kissing anyone outside this family, at least in recent months.  But, if anyone has any information about the exciting activities he’s been engaging in on his nights out with David, feel free to let us know.  In all seriousness, though, we are looking forward to getting input from Phenon’s docs on Monday about whether we need to do anything special to protect her as radiation begins.  Always a surprising adventure!  Have a nice weekend, everyone!

 

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