Wednesday, October 17, 2012

First dose done

We were at the hospital bright and early and first two pills were taken. They slipped down very easily and no issues so far. The rest of the day Isabella had a never ending stream of blood draws so they can monitor how long the drug stays in the blood. This is all part of the study.

A friend and someone who knows what it means to have a child with cancer wrote to me last week that she had been for their annual check up and she had forgotten how draining the long days at the hospital were. I too had forgotten, especially when you are sitting around in one department. We did pop to the art room between homework, reading, knitting and getting the odd bite to eat to relieve the boredom. Isabella too was warn out by it all but thankfully nothing traumatic or nauseous about the day. We were home in time for a much needed cup of tea and a scone. Having been revitalized Isabella was ready to get off to choir for her wednesday rehearsals.

No pills tonight and back in the morning with an empty stomach, blood draw at 24 hours and then on with the day and taking the pills. Thereafter we have weekly visit to the hospital, though some will take longer than others and as we move into November only once a month.

We were given our 28 day supply of pills with instructions on when to take them. I am trying to get my head around when they will need to be taken - on an empty stomach (one hour before food or two hours after) and fitting this in with after school activities and dinner and taking each dose 12 hours after the previous dose. But if this is the greatest challenge then that is a good thing. Anyway once we have worked out the timings and let Isabella know, she will make sure we are all on track!

So onwards we go. We'll update you again soon.

Love,
Emma, Gregorio, Isabella and Matilde. xxx

Thursday, October 11, 2012

An entertaining week.

The good news: Isabella was finally admitted to the new study and will participate in the ADZ6244 trial. Some would call it perseverance, others might say just a damn impatient mother constantly checking her messages and following up with the medical staff for an update. As each day (then hour) slipped away we were moving further away from the magic three weeks since the MRI. If we slipped past that we would have had to do another MRI and who knows if there would have still been space on the study.  First we had to wait for Children's to be approved to participate in the study and then await word that there was still a spot for Isabella. We heard late on Wednesday and our reward a full day at Children's today.

We began with a thorough review of the study objectives, side effects, our rights etc. You name it they've thought of it and if they hadn't they provided very honest and satisfactory answers. We were very impressed with the new oncologist. Next,  a new department to visit - cardiology for ECHO and EKG tests to make sure all is in order before we start treatment. Then we had endocrine visit, neurology, more oncology and blood draws. Quick laugh and a photo shoot with our old friends the clowns (they recognized us and they always provide a great laugh!) and finally we had signed on the bottom line and had consented to start the study. At 2pm (we'd been there since 8) we collapsed in the cafeteria ravenous.

But no rest, Isabella wanted to get back to school - you remember she always wanted to get back to her friends. This is the positive attitude that will get us through the next chapter.  So back to school for about 40 minutes and Isabella was very happy.

The actual treatment will start next Wednesday. Isabella will need to take pills in the morning and evening. For the first and 14th day we will need to spend the day at the hospital so that they can take blood practically every hour after the first dose is administered. Thereafter the visits will be weekly for first month and only monthly after that. The most common known side effects are minimal - the usual digestive issues which we can cope with and a possible rash. So now we hope they are minimal and she tolerates it well but most of all that it has some effect on the tumor. She will have an MRI every two months so we should have an indication before Christmas on how things are progressing.

Isabella is taking it very well. As the news has settled in she has obviously been a bit distracted. Her teachers and friends continue to be a great support in keeping life as normal as possible and let her focus on the good things in life. We are very grateful.

Meanwhile, Matilde has been waiting for her important news. Would she be cast in The Nutcracker again this year. The good news, just in - she will be a Snow Angel. She is thrilled, yes I am biased but it is a beautiful production. Let me know if you want to know which dates you can catch her on stage.

We will update you on how Isabella is doing. But as always, life continues as normal here with all our activities.

With lots of love,
Emma, Gregorio, Isabella and Matilde. xxx


Thursday, October 4, 2012

Here we go again...


It has been a few months since we updated you. Where on earth have we been? Well last Tuesday, as I sat in the MRI waiting room I drafted a blog about our wonderful summer and our house remodeling project but a week on and we are now focused on a new journey and the past slips away into the distance.

On Wednesday last week, Isabella's oncologist called to give her us the preliminary results from the MRI - the tumor has grown and she recommended starting treatment. On Monday the neuro-oncology team all reviewed the scans and are all in agreement  - we have reached that time, time to restart treatment. We cannot risk letting the tumor growing further and affecting her vision. Though at present her vision is perfect and there are no issues. So today we were in the clinic to discuss the treatment options.

The neuro-oncology team are most excited about a new MEK inhibitor drug that goes by the friendly name of ADZ6244. It is a relatively new drug that has been having some success with adults with low grade gliomas. It has only just been approved for under 12 year olds. Tomorrow the national pediatric board will hopefully approve the study and Isabella will hopefully be among the 18-30 children in the US chosen to take part in this phase I trial. The good news is, it is a pill that has to be taken twice a day, no central lines, port-a-caths infusion chemo and all that that entails. But it is relatively new and they do not know the full extent of the side effects (though the list does not look too daunting in the grand scheme of chemo) and the dosage will be worked out on a trial basis as they have not previously administered to children.

We should know by Monday if we can start this new drug. We need to start within three weeks of the MRI, so it should be by the end of next week. If not, there are a few other options, hopefully oral rather IV chemo. So until next week, we are in a holding pattern.

We knew we would reach this day. If learning your child has cancer is like being hit by a bullet train,  being told, after a period of chemo free worry, that the tumor has regrown feels like the steam train has caught up with you (despite desperately trying to escape) till you are finally engulfed by the steam and the piercing sound of the whistle.  We thought we might have 6 months without chemo, we have had nearly three years. We have been lucky. So now we are boarding the train and ready for the next journey. Who knows where it will take us?

We have known from the beginning that we have been pushing reaching for the ultimate treatment  - radiation. As radiation on a developing brain is something to be avoided if possible. We hope this new treatment and whatever follows after will buy us further time till radiation becomes the only option. There is always the hope that newer drugs and treatments will continue to be developed.

Having learnt that we were definitely going to have to start treatment, we decided to tell Isabella on Monday - she needed to hear the news from us in advance of the meeting with the doctors today. She took the news very well, Gregorio is truly a master in putting a positive spin on these things. Isabella has always been very mature since this all began, but now that she is 10 we feel she needs to be part of the discussion, if she wants to be.

So here we are, back on the treatment train. We have upgraded to the new 6 month Children's Hospital visitor pass, "yes, we will be regular visitors." We'll update you once we hear if Isabella is admitted to the new trial and thereafter how she reacts to the treatment and how the tumor responds to it. Meanwhile life continues as normal in the Impavido household - we are back at school, all the activities are back in full swing and Matilde has the Nutcracker auditions this week-end.

As always, thanks for all your support.
Love,
Emma & Gregorio xxx