Liz’s Journal – Entry 2

Connor Chemo News  25/11/2012

Happy Thanksgiving to all of you in the US!  Aussies obviously don’t celebrate Thanksgiving but we got together last Sunday with a few American friends, which was very nice.  The tradition at their house was to take the ribbon tied around our napkin, make a wish and throw it over our shoulder.  I am pretty sure we all made the same wish!  We are thankful for all of you, especially now.

We met with Mark Rosenthal on Thursday.  Scott and I went on our own.  We asked if we could come without Connor to help conserve his energy and emotional well being.  Mark is very blunt and direct, Greg Wheeler actually contacted us a few days prior to our meeting to remind/warn us of his bedside manner.  We knew, we had met with him before.  Sometimes you have to be “cruel to be kind”. We’ve had 10 days to digest that Connor’s tumor has spread and 10 days to face the awful fact that it is very grave no matter how you look at it.  Mark was very direct saying that we needed to understand that chemo would not be a cure for Connor’s tumor.  It is a very rare and aggressive tumor that has no cure (apart from total resection/removal…which hasn’t happened).  The chemo will hopefully lengthen and improve Connor’s life but there is no guarantee it will work and/or for how long.  These are the cold facts, I guess accepting them, in any way we can, will be part of the whole process.  The only “glass half full” potential is that sometimes the faster growing tumors respond better than slower growing tumors.

Mark is suggesting Connor begin next Wed (Nov 28) an IV chemo of 2 drugs: Carboplatin, given on day 1 for 1 hr and Etoposide, given on days 1, 2 ,3 for bw 15-60 min.  If he goes OK he will repeat this every 4 weeks for 4 cycles in total.  Mark wants to see Connor before he begins so we will take him in next Monday.  He said he needs to see how Connor looks and “is” before he begins. He says how Connor responds and feels/improves will tell us if the chemo is working…he won’t need an MRI to tell him if its working…although I presume that will happen irrespectively down the track.

He is suggesting we get a second opinion.  Because it is so rare there isn’t a lot of information/research/proven data for the best way to treat…there will be different philosophy’s on the  prescribed treatment.  He feels for many reasons the approach he is suggesting will be the best for Connor. He has agreed to speak with the doctors in Boston over the weekend but warned us that unless they had something “very compelling” he wouldn’t be motivated to change his mind regarding course of treatment.  He is treating Connor as an adult.  We are meeting with a David Ashley, a top pediatric oncologist, on Monday.  Treating Connor as an adult or pediatric is probably the only debate.  Connor being 18 falls somewhere in the middle.  The treatment of pediatrics is typically much more aggressive.  The younger you are the better your body can tolerate the chemo.  In any event, I feel we will start with the above treatment on Wednesday and if any changes are made it will be in addition to what Mark is suggesting.  He says Connor will feel washed out for a few days following treatment but should then feel OK.  He will lose all of his hair (again :() but it will grow back.

Meanwhile we are trying to carry on as best we can.  Connor has been doing weekly yoga with a dear friend and he is very happy to continue. Its obviously very therapeutic and good for him overall. He has also been doing weekly music therapy with a trained neuro music instructor.  She is gorgeous too and Connor enjoys it immensely.  He is also keeping up with OT, physio, speech and reading recovery.  All of his instructors know what is happening and they are just having him do what he can do.  They are all talented and kind people, that I know care deeply for Connor.  Connor is actually great company, very entertaining and easy to be around.  There is a “feel good” aura around him…you actually feel good being with him…a quiet calm.  Its good to stay in a routine and we’ll keep him doing what he can.  He is sleeping now every afternoon for a few hours but this has been good in that he is then quite upbeat and happy through the evening.

We are encouraging Connor’s friends to come and spend some time with him.  The Yr 12 boys have recently graduated and taken their VCE exams (very intense exams, how they do will determine what and where they can study at University/College). Today (Saturday) most of them are heading off to Byron Bay (beautiful beach community in northern NSW) for “Schoolies”  (the US equivalent of “Spring Break”).  The drinking age here is 18…so its a crazy week of fun, sun, drinking, girls…you can imagine.  Connor was absolutely over the moon excited for Schoolies…he and his friends booked their accommodation back in Feb 2011!  For awhile, when Connor was improving so well, we thought he might be able to go up with Scott for a few days but obviously that won’t be happening.

I told Connor about Caring Bridge and that hundreds of people are going on to read his story…he likes that, so that’s good!  As he was lying on the sofa resting I told him he was very inspiring to many people.  Without missing a beat, in Connor’s typical deadpan way, he said “I don’t feel very inspirational”…which I understand completely but made me smile anyway.

I’m not going to lie, this is all extremely difficult, almost surreal.  How did we end up here?  We are scared, it is scary!  We also love Connor so completely that the thought of more suffering for him (chemo, the disease itself) is heart wrenching/crushing.  But we keep on loving him and surrounding him with positive, happy energy.  No one is sad in front of Connor.  He is getting lots of hugs, kisses and love.  I will continue to post happy photos on FB as much as I can.  We are taking lots of pictures.  Someone said we have to keep on making memories and that is exactly what we are doing. He has been watching Nick play the new “Call of Duty, Black Ops” (Connor had to be a semi pro at this game for the amount of time he used to play it!).  Today he is joining us to watch Hannah row at a school regatta.  He is so proud of her rowing and is her biggest fan.  He is a wonderfully supportive brother, interested in how they are doing at school and wanting to attend their activities.  Its v v nice.

Thank you so much for your love, prayers, concern…everything…we are SO LUCKY that even though many of you are so far away we are blessed with such beautiful, caring family and friends.
I’ll update again next week after Connor has gone through his first stage of chemo.

With love and gratitude  xo