Phenon Updates archive

Author : Julie (47)

Constant Vigilance!

by Julie
Published on: May 12, 2012
Comments: 1 Comment

After talking to Em for a while about all of the things Phenon’s docs have been telling us to be on the alert for, she said this image came to mind.  It seems a perfect encapsulation of where we’re at!

For those who are not Harry Potter fans (is there such a person?), Mad-Eye Moody is a character who was constantly on the alert, looking for evidence of the return of evil.

Phenon is now totally done with her treatments.  The last CT scan is finished, and they like the looks of it.  It is unchanged from the end of chemo, but that’s what they expected.  Radiation often doesn’t shrink the remaining mass, just kills it.  So, she has a remaining mass that is between 3 and 4 inches in diameter in her lung.  It will likely shrink as the dead cells are sloughed away and the supporting structure of blood vessels, etc. figures out it’s not needed. She has also gotten 90% of the way through her follow-up scans and measures.  The only two things left are happening soon – pulmonary function test to check on what damage, if any, has been done to her lungs by the chemo and radiation, and surgery to remove her port.  Surgery is scheduled for this Monday, May 14th, so she’s almost done!  Remember when Nurse Chris said that getting his port out was the day he knew the ordeal was all over?  Well, she’s almost there.  Hooray!

At the same time, every doctor we go to is giving us a list of things to check for every single day, since she won’t be going to the hospital or being seen by the specialists for 3 months.  It’s very reassuring.  We only need to rush her to the hospital if she seems irritable, tired, or resistant to exercise.  WTF?!?  So, if she acts like a teenager, we have to rush her to the hospital?  Gulp.  Thank goodness for Shana, who started laughing hysterically as Tim read her the list the other doctors had given us to be vigilant for (they actually used the word vigilance!!).  She said we can relax a little, and just make note of any changes.  That we don’t have to follow her around evaluating her every step (which would make her irritable for sure!).  We do, however, have to regularly look for more unusual things on the vigilance list, like swelling of her ankles, a blue tinge in her fingernails or toenails, swelling in her neck, any cough at all, etc.  All of those could indicate the return of the tumor or impending heart failure.  So, you know, relax!

To be sane in this transition to what is the new normal, I’ve decided to run a half marathon. (I know that may not sound sane.  But it’s better than me following the kid all over the house checking the responsiveness of her toenails!)  I’ve got to transfer this vigilance to something that won’t make my kid irritable (which would then, obviously, make me rush her to the hospital!).  I decided I needed a new way to kick cancer in the teeth and to try to kick its butt permanently.  So, I’m doing this combination fundraising/training thing through the Leukemia & Lymphoma Society’s Team in Training.  If you are able to donate even $5 ($10 this morning would round me up to a nice even number, and I’d love that!!), it would be awesome.  Must fund those fighting against the rise of evil!  Click here to get to my half marathon page!  I need to raise $1800 to be able to compete in the race on October 13 (almost the one-year anniversary of Phenon’s diagnosis).

In the meantime, much else has happened.  My parents took us to Disney World and we got to go to Harry Potter world at Universal Studios.  (Thank you, again, SO much, Mom and Dad!)

That's Hogwarts behind us!

Thanks (so, so much thanks!!) to Tim’s friend Kathleen, we were able to get a behind the scenes meet-and-greet with some of the animal actors at Universal.  Here’s a clip from that experience, where Ruby and Phenon got to do a little cuddling.  Priceless!!!

Back home, Phenon’s musical (the Musical Adventures of Oliver Twist) opened on Thursday night.  Tonight is her last performance, and she’s amazing, if we do say so ourselves.  And, her Musical Theater Conservatory ended for the season.  This was Phenon and Zach’s duet on the last night of class.

And that, I believe, is all of the most important stuff.  Summer, it seems, is about to begin.

P.S.  I got over the $1500 mark before I left the kick-off event for the LLS training season!  Thank you, thank you, thank you!  But, while I was there, I heard memorials for several amazing people who died over the past year from a blood cancer.  If you haven’t already contributed, if you could donate anything at all to keep these hideous diseases from agonzing other families, I would be so incredibly grateful.  Thanks!  Click here.

 

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!

 

Update

by Julie
Published on: February 9, 2012
Comments: 8 Comments

I couldn’t think of a clever title for this post – I think my brain may be a bit over-cooked.  But I can feel the blog post timer counting down, and thought I’d better post an update tonight, inarticulate or not!

I’m going to start with the lovely things.  Rowan won the lottery!  A school lottery, but hey – I’m not going to downplay good luck!  He will be going to a public magnet school for aerospace engineering.  In practice, this means they focus on math and science and they have electives in robotics, astronomy, and computers, and then the usual stuff you can have for electives (he is very excited about art).  Rowan is really excited, and so are we.  There are very competitive math and science magnets here that you get into through testing, but they all involve doing a huge amount of extra work and much more pressure.  We are thrilled Rowan will get to focus on the things that interest him the most without the additional pressure.  (To say nothing of the fact that he did not actually test into those other programs.  Ahem.)

In other good news, Phenon got the part that she wanted in the school musical.  She will be the Artful Dodger in the Musical Adventures of Oliver Twist.  This is apparently quite a different show than Oliver, just so you know.  (If you want more information about that, you’ll have to talk to Phenon, specifically, because I clearly don’t understand musicals enough.)  The other good news is that her part was double-cast, which means she will do some of the shows and her good friend Victoria will do others.  Therefore, when Phenon has to miss some rehearsals to do radiation, it will not negatively impact the rest of the cast.  It seems a nice, low pressure solution.  (Are you catching the theme of my thrill with the low pressure situations right now?)

Also, the radiation oncologist (I think the technically correct term is radiotherapist) said it is safe to postpone radiation until Phenon gets back from her big Chamber Choir trip.  Thus, radiation will not begin until March 5th.  This is especially nice because a side effect of radiation that we didn’t know about yet is that radiation will cause Phenon to get hoarse and be unable to sing for 4-6 weeks.  The timing means she should be able to do her trip, come back and do radiation, and then be fully recovered before Oliver performances begin.

And in even MORE good news, our friend Dan, the Hodgkin’s oncologist, talked to Shana.  I’ve known Dan for about 30 years, and even worked for him at the National Institutes of Health for a while.  Therefore, I know that he has very high standards for intelligence and competence.  He has been extraordinarily helpful in this decision-making process about radiation.  Dan’s assessment of Shana was that she is awesome.  I already knew this, but for some reason I found it phenomenally reassuring to get affirmation of that from an expert.  I believe his exact words were “extraordinarily accomplished and intelligent” and “has an impressive knowledge of the research.”  He also said that she was able to have an “incredibly high-octane discussion of Phenon’s case.”  My doctor-crush on Shana has now moved into the permanent realm.  This is Shana.  She is not 10, and this is not an old picture – she really looks like this.  I think she is close to my age (maybe as many as 5 years younger?).  Remember, you don’t have to be scared about how young she looks, because Dan says she rocks.  (Okay, not his words, but wouldn’t you say that’s an accurate summary of what he said?)

So that’s all the awesome that’s been happening.  Phenon had her first appointment with the radiation oncologist on Tuesday, and had the radiation simulation this afternoon.  It is quite apparent that Georgetown University Hospital is not a Children’s Hospital.  They don’t seem quite prepared to talk to parents, and were fairly shocked that I wanted to be in the room to hold Phenon’s hand (at her request) as she got her first two tattoos ever.  (The amount of pain she experienced suggests that these may be her only tattoos ever, so I feel honored to have been able to be there for them.)  I was not allowed in the room for the CT scan.  Phenon was okay with that, but it was strange that it was not an option.  At Children’s, the parent is in the room for CT’s and all other procedures unless the teen specifically requests that you NOT be there.  They also don’t seem to have much practice talking to teens.  They do have a nice cartoon book for little kids to explain radiation, though.

The radiation oncologist’s name is Dr. Anatoly Dritschilo.  This is him.  I think this picture is not entirely recent.  Today he said that they had previously been unable to open Phenon’s original PET scan, and they were just able to open it before we arrived to the simulation appointment.  Dr. Dritschilo said that the PET scan suggests they need to revise their treatment plan entirely.  He wants to widen the radiation field beyond what we had previously discussed.  (So, instead of neck, clavicle, and the center of her chest, he wants to add her entire right lung.)  He also believes that the lower dose radiation will be insufficient.  When asked about long-term side effects, he listed all of the things we already knew about.  But he added that Phenon will require twice yearly check-ups to screen for spine cancer in addition to all of the other problems we wrote about here.  That knocked the wind out of me a little bit.  I’ve requested a copy of the treatment plan.

It turns out that Dan has known Dr. Dritschilo since the early 1970’s. He went to Harvard and has been the head of the radiation department at Georgetown for most of his career.  This is impressive.  And I know from the psychology literature I had to learn from all of my years of learnin’ that doctors with many years of experience more accurately and efficiently can identify what to do than anyone else, but also may have more difficulty explaining how they know what they see and what to do.  This is also reassuring.  Nonetheless, I think we are going to get a second opinion.  Apparently there is a much broader range of decision points in radiation than there is in chemotherapy, and that means that clinical opinions and experience can result in dramatically varying opinions about treatment plans.  If we are going to do a higher dose of radiation, and a broader radiation field, and her spine is in the mix along with all of the other important parts, I think I’d really, really like to know that it’s because we’ve got to.  Before knowing who the doctor was, Dan suggested that we might get a second opinion at Children’s Hospital in Philadelphia.  Apparently their radiation team is pretty awesome.  It seems the next few weeks may not include enjoying time away from hospitals.

I feel like I’m behind the ball in learning the radiation terminology, and want to get fluent faster, if I can.  It seems important that I understand this shit better to be able to focus on asking really good questions.  If anyone reading this has the ability to give me a primer on the terminology, I’d really appreciate it.

I really, really, really hate cancer.  And that is all.

Decision: Radiation

by Julie
Published on: January 30, 2012
Comments: 1 Comment

Thanks so much to everyone who sent us questions.  It was very helpful.  On Friday night, Shana (the attending doc) spent about 30 minutes on the phone with me talking through questions, research studies, hunches, and moral implications.  As a side note, I’m extraordinarily impressed by Shana’s ability to make me think she has all the time in the world to answer my every question.  I’m sure she doesn’t, and I’m sure she had a time limit, but she gave me not a hint of limitation.  She offered to talk to me for as long and as many times as it took to make a decision.  That seems very impressive to me.

The bottom line is that we have decided Phenon will do the radiation therapy.  By we, I mean all of us, including Phenon.  She wanted to be involved in this decision, including wanting to know about all of the long-term side effects.  For some things, she has not wanted to be involved in the decision.  I’ve been impressed by her ability to determine which details she is willing/able to handle.

So, that was the bottom line.  Now for the detail.

As I previously mentioned, our biggest concern was the long-term side effects of the radiation.  They include breast cancer (15 times the risk of the general population, which is a lot), higher mortality rates from breast cancer, lung cancer, thyroid cancer, heart disease, and stroke.  Shana agreed that these are risks, but also pointed out some details of these studies that I had not attended to.  To determine the long-term side effects you have to treat someone, and then follow them for 20 to 30 years.  That means that the current data is about people who received the doses and frequencies of radiation that they gave to kids 20 to 30 years ago.  The treatment back then involved much higher doses of radiation than they give now.  Shana said that there is NO data yet about the long-term side effects of the current doses of radiation.  Presumably, the risk is lower than the current data suggests, but we don’t know how much lower.  It could reduce the risk just slightly or by a huge amount.  We are entirely shooting in the dark on this one, but I do feel a little better knowing that the risk is probably at least a little bit lower.

The research data on the usefulness of radiation studied two groups of kids: Early Responders and Late Responders.  Early Responders do not need radiation.  Late Responders must have radiation.  Phenon isn’t either one.  In fact, she’s squarely in the middle.  Therefore, there is NO data that says what she should do.  So, for all of you who asked what the data is for other kids in her situation, there is NONE.  Everyone just has to make a guess.  Even though I profoundly hate having to guess when the stakes are this high, I really did feel reassured by Shana saying that whatever decision we made would be reasonable based on the lack of real data.  She made it alright to go either direction, which somehow made it a little easier to consider all options more rationally.

PET scans have only been used as a diagnostic tool in Hodgkin’s for the last 2 years or so.  Therefore, there is NO data on the relative usefulness of the negative PET in determining whether or not someone needs radiation.  Based on her experience, but not on hard data, Shana estimated that there is only a 5% risk that there are still any malignant cells in the mass still remaining in Phenon’s lung.  Shana said she would be comfortable with a decision to not do radiation.  She feels like a 95% chance of a cure is a good gamble, if we choose to take it.

However, here’s the rub.  If we followed Phenon’s idea (wait 6 months, do another PET), if there was any PET activity, radiation would not be enough to kill the cancer.  It would be a new, more resistant form of Hodgkins.  The treatment for that is a higher dose and longer course of chemo, higher dose radiation, PLUS stem cell transplant.  All of these would have significantly greater side effects than the low dose radiation she could get right now (remembering that all of the awful side effects are well-established for the high-dose radiation).

Kids who are given the FULL range of treatment indicated by their status as Early Responders or Late Responders have a 13% chance of having the lymphoma come back.  If you add the 5% chance that there are still some malignant cells in Phenon’s mass, that’s about an 18% chance that she would need that longer, more intense, higher side-effect treatment.  (Don’t worry, I know that math is a little bit suspect, but since it’s all based on guesses, not science, I decided to not get too hung up on the adding apples to oranges aspect of that.)  Thus, giving Phenon radiation now could reduce her risk from a 1 in 5 chance of recurrence to a 1 in 7 chance.

We took the whole weekend to digest the data.  I spoke with a long-time family friend, Dan, who is a Hodgkin’s oncologist for adults.  His instinct was to do the radiation also.  He’s also going to talk to Shana, and send out all of Phenon’s data to his network of friends and colleagues who are pediatric Hodgkin’s specialists for additional opinions, as well as to some radiological oncologists.  Dan said his assumption is that all will say the same thing as him (and Shana), but he wanted to see if he could find anyone who would disagree and what argument they would offer that he might not have thought of. Tim’s cousin also sent out Phenon’s information to another family member who is a pediatric nurse at another Children’s hospital, and she argued that a short course of low-dose radiation was worth the risk to try to reduce the chances of needing to do the second occurrence treatment that comes with much worse effects.

Given all of that, we are 98% committed to doing the radiation.  (We will only change our minds if we get some compelling arguments from some of the other experts this week.)  The short-term side effects are not nearly as bad as chemo.  She will likely be fatigued, but not dramatically so.  Also, there is the possibility of burns.  However, they are usually no worse than a sunburn and are generally treated adequately with salves for sunburn.  Payal thinks that Georgetown can accommodate her school schedule, so she should be able to go to school full-time and just go to radiation every afternoon.  It will be 14 days of treatment, weekdays only, so nearly three weeks.  We think this means she will start at the end of this week and be finished before the big Chamber Choir trip to Dallas at the end of February.

One of my big goals in all of this was to be able to explain our decision very clearly to Phenon later in life.  If, God forbid, one of the horrid side effects comes to pass, I want to be able to explain to her, logically and with adequate detail, why we made the decision we did based on the data we have.  I feel like we’ve gotten there.  All of this may be a guess, but I think it’s as well-educated a guess as we can muster.  And that, as they say, is that.

Well, That’s Clear as Mud

by Julie
Published on: January 26, 2012
Comments: 3 Comments

We just heard from Payal.  She said Phenon needs radiation.  I have many, many questions before I feel like that’s a final decision, though.  Here’s the deal:

The PET scan result is negative!  That’s a very good thing.  It means the cancer isn’t doing anything.  This is the clear result we were looking for.  A very big hooray!

But the CT scan result is not at all what they wanted to see.  At last scan, Phenon’s tumor had shrunk to 60 percent of what it had been.  It needed to reach 80 percent shrinkage to avoid radiation.  The shrinkage remains at 60 to 65 percent after the last two rounds of chemo.

Payal said that the next round of research on Hodgkins will be to determine if kids in Phenon’s position need radiation after all.  (This was apparently being planned by committee this morning before they had Phenon’s result.  It’s apparently the next big question.)  Payal hypothesized that, in 5 to 10 years, such kids will not be given radiation because they will learn it is unnecessary.  But for now, they don’t know for sure that it is unnecessary.  And she thought it would put everyone’s mind at ease if Phenon just goes ahead with the radiation.  I’m not so sure it will put anyone’s mind at ease if they do radiation.  Payal said she thought Phenon would worry if she still had 40 percent tumor in her lungs and she thought it would be psychologically better to just treat it.  “We owe it to Phenon to treat as much and aggressively as possible, even if later we learn the radiation wasn’t necessary.”  Hmmm.  I’m not so sure.

Phenon’s big question is:  Couldn’t we just leave it be and get a PET scan again in 6 months or a year and see if it’s still dead? This seems significant to me given what an incredible ordeal each PET scan has been.  Indeed, Phenon decided to write her own post about the hideous experience yesterday.  She hasn’t gotten through it yet, but it was unpleasant.  And she’s asking to do it again to avoid having to do radiation.

I’ll be e-mailing in a list of my own questions tomorrow.  A major one is that radiation therapy significantly increases the risk for breast cancer, among many other things.  The National Cancer Institute recommends that girls who receive radiation therapy for Hodgkins start getting annual mammograms starting 8 years after treatment.  That means Phenon would have annual mammograms starting at age 21.  Breast cancer already runs in our family, since my mom has now had it TWICE.  Are they sure enough that radiation is crucial to run the risk of that?  Plus the risk of that many mammograms across her lifetime?

I really am glad the PET is negative, but this feels like a much more difficult position than the decision about chemotherapy.  There was no choice about chemo, and, while the short-term side effects are nasty as all get-out, the long-term side effects are primarily in the areas of processing speed and Executive Functioning.  We know how to handle that.  That’s been my specialty as a psychologist, after all.  Radiation is a different animal.  The short-term side effects are little to none, but the long-term side effects are quite significant.  If the PET had been positive and the mass was 60% there would have been no question about proceeding with radiation.  Or if the PET was negative and the mass was 80% smaller it would have been an easy finish.  But this is messy.  And really important.  We need to understand thoroughly and well. It would be tremendously helpful if y’all would post your questions, too.  That would help us think things through and make sure we are getting all of the necessary information to help make this vital decision.  So, if it was you, what would YOU ask?

In the Home Stretch! Or Not!

by Julie
Published on: January 13, 2012
Comments: 4 Comments

It has been quite a week.  We have had a lot of (capital “F”) Feelings this week.  Whenever we have Feelings, it’s hard for me to write a post, so I’ve been meaning to write every day this week, but haven’t gotten to it.  So, I’ve decided to try to write a “just the facts, ma’am” kind of post instead.  Perhaps that will help me get it done!  We’ve had a good news, bad news kind of week, so I’m going to do all of the good news first.

Good news!  Phenon’s weight is now ONE POUND more than she weighed in August (before this all began).  It took a long time to make up for the massive weight loss during her hospitalizations, but you all have done it with your marvelous food and desserts.  Her clothes fit again – hooray!  This weight of hers maximizes her body’s ability to respond to chemo and to kick lymphoma’s butt, so extra special thank you’s!

Good news!  This is Phenon’s very last round of chemo!  It has been a rough chemo week, physically, emotionally, and bureaucratically.  The national chemotherapy medicine shortage showed its ugly face this week.  On Monday, Phenon got all but one of her chemo meds because the hospital ran out.  It took hours to find that medicine at another hospital that had enough to spare.  It took several more hours for that medicine to be sent to Children’s.  Bad news!  After that, it only took 10 minutes to realize that it was THE WRONG MEDICINE.  They were finally able to get the right medicine, the one that she is NOT anaphylactically allergic to, by 10am on Tuesday.  But because she missed her Monday dose, that meant Phenon had to add an EXTRA DAY of chemo this week (Thursday).  That extra day cost her a lot emotionally.  She had been counting down the days of chemo/clinic time, and seeing that number go up was really rough.  It knocked her almost as low as I’ve seen her during this process.  Good news!  Yesterday was the extra day, so now, only one more clinic/chemo day to go!  (We don’t THINK there’s any way for that ticker to go back up again.)  Usually that last day would be Monday, but Monday is a holiday, so Tuesday, January 17th is Phenon’s last day of chemo.  It’s a short day:  only two medicines.  Bad news!  Because of the Monday holiday, Tuesday is likely to be a total madhouse of overbookings and delays.  Thus, our 45 minute appointment MAY take 6 hours or so (it has happened before).

Good news!  Teen Room Zoe posted a comment to our paying it forward post, and your generosity is already making inpatient oncology/hematology hospitalization a less miserable experience for the teens there right now.  Hooray!!  Thank you!!

Good news!  I heard from Erica (Amani’s mom), and you all have been incredibly generous to her, too.  She is so grateful. Bad news!  Amani is having a terrible week, and Erica’s job has been more inflexible.  The road for them continues to be incredibly rough.

Bad news!  During Phenon’s most recent doctor appointment, while Phenon was saying how excited she was to be almost done, Payal “reminded” her that there is still the possibility of radiation, based on her PET/CT results.  We were quite thrown off – no mention of radiation therapy was made when we discussed those results.  Turns out – oops – they meant to.  When Shana came in, we had a big discussion about the medium-level possibility of radiation.  So, here’s the scoop.  As you may recall, at the last PET/CT scan, the CT showed that Phenon’s tumor had shrunk by about 60 percent, and some portion of what remains is supporting structure, not malignancy.  But EXACTLY how much is not malignancy is not known.  So it’s all an estimate based on previous research.  They have found that the cancer doesn’t usually come back if they kill 80 percent of the mass AND the PET scan (activity level) is “negative.”  This means that, as of the last scan, Phenon still has 20 percent killing left to do.  While that seems easy-breezy given the 60 percent kill in the first two rounds, it’s apparently not that easy.  The biggest bang for the chemo buck usually comes in the first two rounds.  The last 20 percent may, or may not, happen with the second two rounds of chemo.  Thus, the medium-level chance that she’s not done yet.  As for the “negative” PET scan, there is apparently medical debate as to what counts as a “negative” scan.  A 2 out of 14 is a good low number, but is not a negative result.  A 0 out of 14 would be definitively negative.  A 1 – well…  that would be up for debate.

Neutral news!  Phenon’s next PET/CT scan will happen towards the end of the month (around the 27th is the goal, but still waiting for actual date).  An 80 percent tumor shrinkage (or more) with a PET activity result of 0 will mean Phenon is done and cured – an unequivocally great result.  A less than 80 percent tumor shrinkage (let’s say 78 percent) and a PET activity result of 1 will mean a very difficult calculus weighing the long-term negative side effects of radiation against the small possibilities of tumor resurgence.  Worst case: A less than 80 percent tumor shrinkage (let’s say 70 percent) and a PET activity result of 2 or more will mean a definite need for radiation therapy.

What does radiation entail, you ask?  Well, I have a list of about 6,000 questions, myself, so I can’t fill you in very well right now.  But, (bad news!) they said that radiation therapy will involve DAILY treatment for 2 to 3 weeks.  Good news!  Each appointment is only 15 minutes long (so they say – I’m certain, though, that the 15 minutes doesn’t account for check-in, paperwork, and waiting room time), and will happen at either Georgetown or UMBC.  Good news!  Radiation does not generally cause nausea, does not involve needle sticks or port access, and does not cause hair loss or delay hair re-growth.  Bad news!  Radiation can result in fatigue, immune suppression, and need for blood transfusions.  And the long-term side effects are, well, quite a thing.  To put it simply, the possibility of radiation is one of the things that has been contributing to my fragile ability to sleep through a night.  I had begun to sleep better after the last PET/CT results.  Now it looks like I’ll have to wait for the next results before I can hope for a good night’s sleep.

So, you ask, when will Phenon get to be done with home-hospital teaching and get to return to school?  We now have no idea.  We thought Phenon would be back to school, at the latest, on the first day of the next quarter – January 24th.  She will probably be ready to go back around the 18th, but that’s exams and whatnot, so it doesn’t make sense to go back before the 24th.  And she will.  She won’t have her PET/CT results before then.  But there is the possibility, then, that she’ll go back and then have to re-withdraw for several weeks while she does radiation.  Like I said, I have a list of questions. (One of which is, could she do radiation later?  Like April or May?  Or July?  That way she could go back to school and stay a while?)

Bad news! All of this radiation talk put a real damper on Phenon’s sense of resilience this week.  And now she is in the full swing of chemo side effects – the feeling wrong in her body, fatigue, staring into space, the inability to concentrate, the horrible stomach combined with the steroid-driven desperation to eat.  She wakes up between 4:00 and 5:00 each morning in a full-blown yelling panic of “you have to bring me something to eat right this second or I’m going to DIE!”  But, of course, everything I am coherently able to offer at that time of day sounds vomit-inducing.  I know from previous rounds that this will last just a few more days – she may even feel alright tomorrow morning and be able to go to Rowan’s basketball game.  (She had a lot of fun filming his game last week and learning how to edit a video for him.)  But in the meantime she feels horrid.  She is helped by simple companionship and having our full attention (so I haven’t gotten much done this week other than being by her side).  And she has obsessively focused on her Make-A-Wish Foundation plan this week as a way to console herself and imagine herself out of this place.  So yesterday, we moved a cozy chair into the kitchen (this is not a BIG kitchen, mind you – it got CROWDED in there!) so she could mumble at me about what she wanted to eat for every meal during her Make-A-Wish week.  Phenon’s current wish idea is beach-related (this is her third major wish plan, so far, so we’ll see where we end up by the time the volunteers come to do her interview), so we also spent a full 30 minutes discussing potential bathing suit options (color choices, style choices, show scars? cover scars?).  I am grateful for the distraction.

And that’s that.  Today Phenon gets her last neulasta shot (thank you, again, Roxanne!) at home.  That means tonight will be rough – she always has major discomfort and sleeplessness the night after her shot.  But she’ll probably feel better by Sunday, and Monday will be a lovely holiday. Have a good weekend, everyone!  And happy MLK day!

 

Forward motion

by Julie
Published on: January 10, 2012
Comments: 1 Comment

Remember how I promised to post here about a person you could send your donations to?  Well, our friend Beth, whom we thought might need help, is doing fine – hooray!!  She may not need a bone marrow transplant after all, so she said she doesn’t need the donations right now.  But I met someone yesterday who does.

Yesterday, for the very first time, a parent introduced herself to me in the chemo infusion pod.  I was so happy to be approached by someone!  It turns out that Erica had seen Phenon sitting comfortably bald in her chemo chair.  Her daughter, Amani, had just started chemo, and she wanted to know what to do to help Amani respond to hair loss like Phenon.  1) Could she make it fun?  2) Should they pre-emptively shave her head when her hair starts to fall out?  I answered her questions: 1) nope.  2) maybe?  As we talked, I was really charmed by Erica.  She was a psychology student before this started, and she wanted to become a counselor to work with foster kids with attachment issues.  She is a preschool teacher, and has had numerous foster kids in her classroom, and she wanted to be able to better help them.  I really appreciated Erica’s warmth, and her willingness to cry a little bit as she talked about what was happening.  Other parents there don’t cry.  I’ve never seen a single other parent on the unit even tear up a little.  I tear up sometimes.  I liked that Erica made me feel a little bit normal.

I was also charmed by Amani.  She made me guess her age (7), and she spent her four hours in the pod making crafts with pipe cleaners and chatting with the nurses.  You know I like a girl who needs to keep her hands busy! Amani gave all the nurses hugs good-bye. Amani is getting chemo now, but she doesn’t have cancer.  She has sickle cell disease.  When she was diagnosed as an infant, her father left immediately and has never come back.  Erica has been raising her two daughters (15 year old and Amani) alone throughout this process.  Amani’s sickle cell disease has been progressive, and has started to kill her.  She has already had two strokes, despite monthly blood transfusions.  Amani now requires chemo to try to slow down the disease course so she can make it to a bone marrow transplant.  A bone marrow transplant is extraordinarily dangerous, with a very high risk for complications.  Erica is going to have to take six months off of work to take care of Amani – at first to live in the hospital with her while she is in isolation (45 days, minimum), and then at home where she will also be in isolation.  Six months is the best case scenario.

Erica never mentioned fundraising to me.  She was looking for support and ideas.  But when she talked about six months off of work as a preschool teacher and I thought about her single parent status, I asked if she had done any fundraisers yet.  Amani cheerfully jumped out of her chair and handed me a flyer.  They are having a concert to raise money on March 18.  But I thought maybe we could use this website to help her out before that.

I have had a number of people write to me that they had been planning to send us money, but we met the goal before they got to do it.  Could you send Amani’s family $10?  Or $20?  http://amanisjourney.com/donations  A full third of the donations we received were from strangers, most of whom sent us $10 or $20.  I sent in a little of our overage to Amani’s mom last night.  Even if you can’t send in ANY money to them at all, could you post a link to her site on facebook and ask your friends to donate $10 or $20 or more?  Tweet about it?  That’s the main way that we raised money – the power of social media and friends passing on word to friends was amazing.  When you go to donate money, there’s a comment field under Amani’s name.  It would be really cool if you’d put Phenon’s name in there, so Erica knows how y’all found her and why you’re helping out.  This little girl is in for a hell of a fight, and she’s been dealt an extra crappy hand.  I would love to pay forward our sense that good strangers will step up when you’re in dire straits.  Thank you, so much for any help you can send.

Taken care of

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

We have more than reached our goal now.  More contributions have continued to come in over night, even.  The thing is, you’ve already done it!  We have been very, very well taken care of.  A few contributors noted that we could pass the contribution forward if we wanted to, and we are so grateful for that.  We are still waiting to hear from our friend to see if it’s okay to link to her blog.  She got a virus during the week before her next round of chemo, which is especially, exceptionally rude given that that’s the week you usually feel almost normal.  Urg. Understandably, it may take her a while to respond to an e-mail!

In the meantime, we are going to use $100 of the fund to bring a care package to the Oncology Inpatient Teen Room when Phenon goes for her next round of chemo on Monday.  For those who are just tuning in, the Teen Room is actually a young woman named Zoe, who goes around to the rooms of every teen who is admitted to the unit, talks to them to find out their interests and how they’re feeling, and then she devises activities, crafts, social events, and entertainment options that will help make the time pass less horribly.  When Phenon was an inpatient, it took Zoe one try to find something that would entertain Phenon in her own room, and three tries before she lured Phenon out of her room.  But she was friendly, empathic, enthusiastic, and persistent, and was clearly not going to give up until she figured something out that would work.  Zoe runs that teen room by herself, and her nail polish party involved a meager four bottles of nail polish and some supplies that belonged to one of the inpatients.  We thought we could beef that up a little bit, and give Zoe her own supplies.  We are also going to bring some of the books that Phenon has been given that she has finished – especially the ones that are good reads for when you’ve got chemo brain.

Some contributors have suggested that we use any overage to buy Phenon some cool gift.  But that’s already taken care of, too.  Our friends, the Moore’s, held a fundraiser a while ago to raise money to help Phenon buy a computer that would serve as a recording studio for her.  Phenon had also saved up from babysitting, and her relatives made contributions to the fund for Christmas.  She has spent this week (in which she has been able to go to school for only one period a day due to bureaucratic regulations) recording herself singing, playing piano, and playing ukelele.  People have showered Phenon with gifts, and many have even given Rowan gifts so he doesn’t feel left out.  They don’t need anything else!

We really are going to be okay.  Actually, more than okay.  Because we will move forward carrying all of this love, and help, and support in our hearts.  Thank you, again.

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