Telephone conference with Dr. Giselle Sholler

Doctor Sholler is a pediatric oncologist who is running the personalized medicine study in Grand Rapids, Michigan.  I’ve had a chance to speak with her about Maya and we are in the process of signing up for the study.

 

GS:  How is Maya doing?

KK: She’s well.  She has been on the irenotecan/tazolomide for six cycles and we’ve decided to continue with this course for now.  Basically, for children like Maya, they’ll do OK for 2 – 3 years until the disease mutates significantly and she no longer responds to treatment.

GS: How is she tolerating the therapy.

KK: Over all, OK.  She does get neuropathic pain and she needs Gabapentine to tie her over.  Sometimes, we will have to give her morphine.

GS: Oh, so it is severe.   Do you know how Maya’s disease is expressed?

KK: There are a couple of spots in her abdomen, but most of the disease in the form of bone lesions.  Namely, in the lower back chain, pelvis and upper femurs in both legs.

GS: OK. So, we can actually get tumor samples. Do you understand how the study will proceed?

KK: I understand based on what we’ve discussed last time. Namely, there is a panel of Oncologists from all over, who will make therapy recommendation based on the results from the screens, such as micro-array gene tests.

GS: Yes.  The panel will review the results and will recommend FDA approved (only) drugs. Now the difference here is that the combination of drugs may not been considered before.

KK: Yes.

GS: Most of the therapy can be done in canada. However, she’ll need to be here at the center for the initial “targetted” therapy. This is to ensure that Maya tolerates the drugs and for safety reasons.

KK: Do you know what the drugs will be or is this the therapy recommendation from the panel?

GS: It will be the targetted therapy recommended by the panel. Even so, the first treatment can be split into two parts;  The initial biopsy and the subsequent treatment.  So, the entire initial cycle can be 21 – 28 days.  Dr. Irwin will be invited to the tumor board and can participate in the discussion.  There may be up to 4 drugs that Maya will be given.

GS: Also, I do have contacts with Canadian  Health care, so it may be possible to get some coverage by the Canadian Government.

KK: OK.  I have a couple of questions:

Why do you need a tumor sample?  Can you not use the existing samples?

GS: The disease will undergo mutation after therapy. So, ideally we want to take samples regularly.  Sampling should be done every so often to ensure that we understand better the state of the disease.

KK: That makes a lot of sense.  Are you looking at the telemerase inhibitors and telemere lengths?

GS: Yes. This is one of the areas we’re looking at. However, we do question the impact of treatment, as it can have development impacts in the brain.

GS: There is a meeting on June 23rd for personalized medicine.  I would like to send out this invitation.

KK: Yes.  I’ll be there.

GS: May be you can post on neuroblastoma.ca.

KK: Yes, we can definitely consider.  Thank you very much for looking after the children.

GS: We’ll speak again.

May 12, 2012 Disney Here We Come

Here are some disney pics and other photo’s that I’ve finally uploaded.

 

Not many blog updates lately…the truth is that it has been hard for me (Indira) to write.  As another NB family said it, we are just tired, and for me especially it is emotional, and I have trying so hard to stay positive, to think about good things and not be sad, and while writing is a good way to release emotions, it also makes me sad and many times it makes me cry… I feel good afterwards, but I am just fighting not to be sad…

In any case, no sadness today.  Well as many of you may know, on March 26th it was a year since Maya was diagnosed (writing an entry on that, I am halfway…bt again blame it on the sadness :-)), and so this Easter was BIG for me.  Last year we were at the hospital, Maya could not walk.  I had to carry her like a baby for her to loook for eggs.  This year we were home and oh boy we had a great time with Maya’s aunts and cousins.  We painted eggs, baked cookies, had an egg hunt, it was nice.  It was good to be home!!  Funny enough, Maya did not remember last year’s Easter, but she did remember the egg hunt from the year before.

The last few days have been hectic.  The Tuesday after the chemo, Maya was admitted to Sick Kids due to fever, loose stools and nausea.   Of course, we get to SickKids and right after the admission and before the antibiotics start to run, Maya’s feve was gone, no more runny stools and no more nausea.  Maya was energetic and bouncing around, but it was too late.  Maya was isolated for 48 hours.  It was hard to keep a bouncy 5 year old inside a room.   Maya, kept on saying, “Mom, i feel good, I do not have lose stools, why can’t I go out?”.  As soon as the 48 hours isolation period was over, and the stool samples and blood cultures came back negative, Maya was discharged and so on thursday afternoon we went home.   On thursday night, Maya threw up and her NG tube came out.   Maya panicked, and she tried to put it back in.   Maya promised to take her medicines and drink enough fluids (she has to drink 14oo ml daily).  She has been doing great with the medicines, athough I still have to figuere out how to give her Septra, as I cannot maske the taste.

 

Likewise, Mother’s day was nice, as last year we spent it at the hospital. This year we were home.  And when Maya gave me some flowers, I started to cry.  Maya said “mom , are those tears of happiness?” and I said “yes, Maya, how did you know?” and smart Maya said “because you usually cry when you are happy” .  Wow!! once she saw me cry and she asked me why and I said because I am happy, and she remembered!!

The last week of April, Maya had her 6th cycle of Irinotecan and Temadol, the 5 days of chemo were cut to 4 days as Maya developed one of those crazy reactions – a lot of kicking and screaming, just not being herself.  That meant a 20% reduction on her chemo. We agreed with it.  The same week Maya had her MIBG scan.  Maya was a pro on the the almost 2 hour scan.  She did complain during the injection.  Even though it is not painful for Maya, as she get the radioactive solution through her CVL line, it has an ‘awful’ taste as per Maya, and so as soon as the injection started, I quickly looked into my bad, which is full of surprises.  I could not find a lollipop, but I found a chocolate easter egg.  Maya looked at me, as if “really, mom, are you going to let me have an easter egg now?” and while Maya started to cry saying, it tastes awful, it taste awful, she quickly took a bite of the egg, and the taste of the radioactive solution was fixed :-).

The results of the scan were not what I always hope for “NED”, but they were the first piece of very good news in a while.  Maya’s cancer remains the same, but with minimal improvement on her femur and pelvis….MINIMAL improvement, ominimal…. ahhh it is better than no improvement.  Yes, we have been having no improvement scans since the scans pre- bone marrow transplant. And Maya and I celebrated this piece of good news.  We are on the right track, even if we take tiny steps.

By Friday morning, we noticed that Maya was warm.  She had low grade fever, but she was playing with her friends, eating, running around, showing no signs of being sick.  By sunday night, happy Maya spiked a fever of 38.9C and off we went to emergency.  One of the perks of being an oncology child is that you get seen right away and in spite of a very crowded emergency room at Sick Kids, Maya was given a room in the emergency ward right away.  Maya was all happy and bouncing around.  Blood cultures were taken, which came back negative. Maya was not neutropenic and so after several hours we were sent home.   Because Maya is still in active cancer treatment and because of her transplant, any fevers are monitored very closely.

By Monday afternoon her fevers were gone, and she was back to the 36 C range, asn so we were finally able to confirm Maya’s wish trip to Disney!!!  YES, I am so excited to share with you that in a few hours the entire family will be flying to Orlando for 3 days and then we will be boarding the Disney Dream cruise ship for a 4 days cruise to the bahamas with a stop over on Disney’s Island – apparently they have an island”.   Maya is soooo happy.  It was funny, because during her hospital stay this past week, Mickey was visiting the hospital. Poor Mickey was going room by room, all 8 floors of sick kids, I should say Brave and good hearted Mickey.  And so Maya was so happy to see Mickey and was wondering if Mickey remembered her from her disney trip back 2 1/2 years ago.   Mickey acknowledged that he remembered her, and then Maya said that she will go again to Disney in a few days, and Mickey gave her a hug.  Maya then said to the nurses “I wonder why that mouse does not talk” :-).

Anyhow, back to the wish.  The children’s wish foundation of Canada granted Maya this wish.  I have to say that I am very much impressed and in awe of all the work the children’s wish foundation does.  They planned for every single detail of the trip.  In all the rushing around of the last few days, we did not have to worry about anything.  Maya still cannot believe that someone is paying for her to go on this trip “really moooom?”. I wanted to say a BIG THANKS to the children’s wish, and a big thanks to Angela, Maya’s wish coordinator for all the work.  Maya is very, very happy and excited.

I am crossing my fingers for Maya not to get any fevers.  I will write back once we are back.