Liz’s Journal – Entry 3

Last Monday morning, Nov 26th, Scott, Connor and I met with David Ashley.  David was the Director of Pediatric Oncology for many years at the Royal Children’s Hospital in Melbourne but left a few years ago and is a Professor at a local University but still consults with patients on a limited basis at Monash Hospital. He is highly regarded and is well connected.  He studied and worked in the US for many years and has stayed in the forefront of oncology.  He was very forthcoming and although didn’t tell us anything new and agreed with Mark Rosenthal on the initial round of chemo treatment for Connor did give us some important contact information.  The world of ependymoma experts isn’t that large, which isn’t surprising given how rare it is.  There are a handful of doctors/PhD’s in the Western world that have made these types of tumors their specialty.  David said they are quite receptive to patients (and for younger patients, their parents) reaching out to them directly.  He gave us names of doctors in Canada, Perth, Colorado, Paris, St Judes in Memphis and a few others.  This has been excellent for Scott who is quickly becoming a “layman’s” ependymoma expert on his own.  Scott emailed several of these doctors and has spoken in depth with  Nick Gottard, the oncologist in Perth.  All have responded with interest and concern. They have made observations, suggestions for future potential treatment and made introductions to other key professionals that are leaders in this area of brain tumors.  Scott is now connected with key researchers at the CERN Foundation (Collaborative Ependymoma Research Network), in Ohio.  No one has said there is a miracle cure but lots of theories abound all with a different course of treatment.  They all agree that Connor should get through this stage of chemo and see how he does.  The body can handle only so much radiation…Connor can have a bit more targeted (sterotactic) but not much more.  Chemo isn’t like that, you can keep giving it. I presume you reach a stage that you don’t want to put the patient through it if its not working but giving Connor different treatments in the future is an option.  We’ve also learned the ependymoma’s are typically slow growing which should give us time to evaluate options.

We left our appointment with David Ashley and drove completely across town for another meeting with Mark Rosenthal.  Mark seemed genuinely surprised and happy that Connor looked so well.  Summer is approaching and Connor is quite tan, he looks good!.  He has been on steroids the last few weeks, since the MRI and it has helped his appetite and probably feels better overall.  Mark reviewed everything with us, Connor had a blood test, met the staff that would be looking after him on Wednesday and that was that.  Scott did mention he’d be reaching out to other experts around the world and after initially bristling seemed OK with Scott venturing out on his own.  All of the doctors have asked that when Scott is emailing to keep the others “in the loop”…I suppose this is how they stay sharp and learn from one another.  We are quite happy to have as many specialists as possible thinking about and trying to help Connor.

On Wednesday Connor had an IV of 2 different drugs, an hour of Carboplatin and 20 minutes of Etoposide.  He is so accepting and brave it brings me to tears even typing it.  The nurses are jabbing away at his hand, trying to find a good vein and he is so helpful and good natured. The outpatient chemo day room at Royal Melbourne is actually quite small.  There would  be room for maybe 6 patients, all sitting in a recliner type chairs.  We brought Connor’s laptop and he watched “Gran Torino” in its entirety.  I think some of the other patients were envious.  Scott and I left as there wasn’t room for us and went to the hospital café.  We’d check on Connor every 30 minutes or so and when asked how he was always responded, “yeah, I’m good”.  I was overcome with sadness.  He looked so “normal” sitting there, a tall, tan ,healthy 18 yr old young man..not sick looking at all.  It didn’t look right, why did he have to be there in the first place? The same thing happened when Connor was measured for his radiation mask, lying perfectly still while his head was encapsulated in a breathable plastic mould  in March.  That week in March was the week before the Head of the River, the final and all so important rowing regatta.  We  could have never envisioned the year before when we were celebrating at the water’s edge that Connor wouldn’t be back the following year, that other plans were in store for him.  This time, he should have been celebrating after a year of hard school work and exams at Schoolies but again life has taken Connor down a different path.  The enormity of what has happened and what is still happening to Connor is overwhelming and on these occasions when it confronts me head on I just fall apart.  Not for long, Scott is good and says the right things, I get it out of my system and re-group.

On Thursday and Friday Connor’s treatment was shorter, just the Etoposide.  He handled it all very well. They were giving him extra steroids and fluids to help with the nausea but he was fine.  The nurses and even other patients can’t help but warm to him.  He smiles and thanks them. I keep thinking about Connor’s brave, strong and accepting nature.  My mind flashing back to all sorts of memories.  Connor’s first day of school: giving me a hug and running into class.  Me, teary eyed, standing at the door waiting for him to turn around and wave but he doesn’t, he is already engrossed in whatever has caught his attention. Skiing/snowboarding in Colorado: chasing my cousin Melissa, with Nick at his heels, through the woods, hooting and whooping as he goes.  Me, skirting along the edge nervously until I see them safely emerge. The biggest, tallest, fastest roller coasters at Great America:  running from one to another as fast as he can, with both Nick & Hannah in tow, Scott, friend Dave Harris and cousin Jordan rounding out the group. I can’t even go, makes me queasy thinking about it. Bungy Jumping in New Zealand:  there is film footage of Connor, with his friend Brodie, shuffling to the edge, high on an erected platform and without hesitation leaping and yelping with joy.  I can’t watch it without my hands beginning to sweat.  He has handled all of his treatments in the same way…his surgery, his radiation and now chemo.  No tears, a few questions, not many, and no looking back, accepting.  He has plunged ahead without fear or complaint…or if he has any, not showing or saying it.  People say I am brave, I assure you, I am not.  I am enduring this because I have to and I do have to dig deep to find strength.  But Connor, he is brave, its just part of who he has always been. We would all agree it makes being with him and supporting him that much easier.

He now has a few weeks off, the next cycle beginning Wednesday December 19th.  Originally Mark had said his treatment would be every 4 weeks but when we met with him on the Monday he said he had decided to go every 3 weeks instead.  I told him Hannah, Connor’s 14yr old sister,  would be happy as she felt 4 was too big of a break…I was thinking the same thing…if we’re doing it, let’s do it!  Connor seems good.  He isn’t massively better but I wouldn’t say he is any worse either.  They did say this chemo has mild symptoms but may accumulate over the cycles.  So far, so good.