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.

8 Comments
  1. Catie says:

    Please please please ask me any radiation-related questions! I may be able to help!

  2. Melissa says:

    Congratulations Rowan-that is incredibky exciting news!! We can’t wait to see Oliver in the spring. As for radiation and cancer — i have nothing kind to say. We love you all.

  3. Maureen says:

    You all have been very strong up to this point and have dealt with all of this in a positive way. Remember, you are more than half way finished with all of this! Hang in there!!! Congratulations to Phenon and Rowan.

  4. Chandra says:

    That is super exciting news for Rowan and Phenon! The timing for Rowan is spot on for him to lead the colonization of the moon by the end of Newt’s second term! It’s so great that you have such varied and interesting school options. And Phenon will be a perfect artful dodger! Congrats to both!!
    Re the second opinion, I second that opinion. While it is true what you say about the seasoned docs, it’s also true that they often can be more and unnecessarily conservative in their approach. I’m thinking of Shana (or was it Payal?) saying that the next edge of research is to determine whether kids in Phenon’s position need radiation at all, and I’m wondering if Dr. Mustache is, by virtue of his long years of experience, more removed from the more current thinking. Not to discount the value of experience, but I do think, especially in a rapidly-changing, research-heavy field like radonc, there has to be great value in getting the perspective of people who have more recently been completely immersed in the latest data. I also wonder how much of his work is pediatric–I see that his second specialty is ped radonc but his current interests don’t seem very pediatric…just thinking out loud here.
    Lots of love to you all…

  5. Victoria Nelson says:

    Good news is amazing! And Phenon and I make a great pair for Artful Dodger. Congrats Rowan! He should have gon to loiederman 😉
    ~Victoria

  6. Zoe says:

    While I will always love Loiederman the most… My brother is an eighth grader at Parkland now and loves it! From what I can understand; it’s fabulous. Congrats to everyone!

  7. Aliza says:

    Don’t we ALL really, really hate cancer? I know I do. Anyways, Mazel tov to everyone!

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