Aug 23, What to do… What to do…

Once again it has been a while since the last post…  All is well with Maya, we have had such a wonderful summer so far.  As a matter of fact I do not remember ever having such a busy and fun summer.   Maya has been 3 months off chemo, and gosh we have enjoyed this time so much.  Maya and I (Indira) are tanned and with a few extra pounds.

Maya had her last chemo round of irinotecan and temazolomide in May , right after her wish trip to Disney.  Then we thought Maya would be doing the Genomics/personalized medicine at the NIH in WDC, however as you all know the tumor sample they got had no NB cells,  and so Maya did not qualify.  No NB cells… it is good!!!.  However, she does have a spot on her back, which was too difficult and risky to get to and of course some bone lesions on her pelvis.  So she is still has this damn cancer.

From the CT/MIBG scans at the NIH it appeared that Maya’s cancer was/is going away slowly, and so the question again  is: what to do?.    In any case, after  the previous blog  update we  decided for Maya to continue on the Irinotecan/Temazolomide chemo as they seemed to be kicking away the cancer, slowly but surely.   Monday (yesterday), Maya, Karen and I packed the usual items (our chemo bag) and headed to sick kids as Maya was scheduled to start her 8th cycle of Irinoteca/temazolomide.

Every time I get to Sick Kids I feel this emptiness in my stomach, yes it is a reminder that we are there to fight the big C., and yesterday with the news of Jack Layton’s passing I had this horrible knot in my stomach, plus a lot of anger and sadness.  For Maya, Monday was an easy day, we checked into the daycare (day hospital), blood work was drawn, Maya was connected the the IV machine and then we headed to see Maya’s cancer team.  The clinic was packed, gosh, sadness took over me once again, how can it be that there are so many people, so many kids fighting this monster.  Before Maya was diagnosed I did not know any kid with Cancer, and now they surround me, and the list of kids that we pray for every night keeps getting longer and longer.

In any case, Maya was a bundle of energy, running around, laughing, and just being silly.  At some point she pretended to be Dr. Irwin.  Dr. Irwin and I laughed at Maya.  Maya had her check up and everything was perfect for chemo to start.  However, Dr. Irwin talked to me about the Aurora Kinase inhibitor  phase II trial which just opened at Sick Kids.  We had expressed our interest in the past about this trial, and so there are 4 spots available.  Keep in mind that we these trial spots come and go very quickly.   A pre-requisite for this is to be off chemo for at least 3 weeks, and so if Maya started the irinotecan/temazolomide chemo on Monday, she needed to wait another 3 weeks for this  trial, in case we were still interested, and by then maybe the spots could be gone.   what to do, what to do…..

It was decided that we would take the day to go home and think about it, go over the consent forms, etc.  If we decide to go with it, Maya would have to go through different tests/scans so they can get a baseline before Maya is enrolled in the trial.  If we decided not to go with it, we start the irinotecan/temazolomide today tuesday.

what to do, what to do again….of course the list of side effects scares the s^%# out of me.  One of them is Neutropenia.  Maya has not been neutropenic with the irinotecan/tezolomide.  In fact Maya has not had a transfusion since December 2010.  Plus Maya is scheduled to start Senior K in september (uniforms, backpack, everything is ready).  Neutropenia means more visits to the hospital, and Maya not able to go to school as she would not have an immune system.  But… if this new trial works then the positives outweight the negatives… and so it is 2:30 am in the morning, and I am wide awake as I have been surfing the web reading and reading about aurora kinase, and I still have not made up my mind, and yes the dreaded sentence “quality of life” comes to mind.   Maya has not been in pain, she has not had any pokes, she has been an overly happy child with a great quality of life…. I see my little angel sleeping, and the only thing I know is that I love her so much, and yes I am thankful for every day  I have with her, for her smile, for her defiance, for her tantrums, for her everything….what to do? and I pray to God that we make the right desicion for Maya.

I really took comfort today on the letter Mr. Jack Layton left for Canadians.  Rest in peace Mr. Layton,  my condolences to your family and friends.

“To other Canadians who are on journeys to defeat cancer and to live their lives, I say this: please don?t be discouraged that my own journey hasn?t gone as well as I had hoped. You must not lose your own hope. Treatments and therapies have never been better in the face of this disease. You have every reason to be optimistic, determined, and focused on the future. My only other advice is to cherish every moment with those you love at every stage of your journey, as I have done this summer.” Jack Layton

Decision time again

We have come to another decision point. Why isn’t there a course on “how to make life altering decisions???”    I can think of many courses I’d love to take.  Simply put, we the neuroblastoma parents are put in situations where we are expected to make life and death decisions on behalf of our child without sufficient support.  We are on our own.

Will the decision that we make now the optimal decision? Hard to say. And there is no one who can support us with making the best decision.  Seems a bit harsh to me.

Every time we have to make such a decision, we consider the options to our best ability. Sadly, no one is qualified to make such a decision, because no one knows how to cure this disease; not us, not the doctors.  And since no one knows how to cure this disease, professionally, the clinicians are not able to provide guidance. Giving such an advise can ultimately lead to malpractice. Morally this is not right.

And it doesn’t get easier. Anyways, things are very good now. Maya is doing well. She’s had a darn good summer so far. Trips every week to ROM, Wonderland, Farms etc. Indira’s been very supportive of giving everything she can to Maya.

Since we were not able to proceed with the study in Washington, we are now faced with what to do next. The options are as follows:

  • Stay with Irenotecan and Tazolomide. This is what we’ve been doing and it’s kept the disease in check. All good.
  • Try fenretinide. This is a Vitamin A derivative which has shown to reduce relapses in many cancers. It seems to mature cancer cells. Since Maya’s cancer to a large degree is maturing, fenretinide seems to be a viable option. The problem is, it is still a trial I drug and for some, the side effects are not pretty. Our question is, do we put Maya under potential duress when she’s been doing so well?
  • Try ALK inhibitor. This is a trial which Dr. Baruchel is running at sick kids and it comes recommended. This trial is available, if Maya does have ALK mutation. We’re still waiting for the results from Washington.
  • And lastly do nothing. Maya is doing well. The disease is under check. So, why not just enjoy this lull? Well… I would like to really concentrate on diet and see if her diet has any impact at all. If disease starts to progress again, we could possibly fall back to Irenotecan and Tazolomide again.


So, these are the choices we are facing. Which is right? What do we do? What would you do?  Best we can seems to be the only answer to me.