Liz’s Journal – Entry 1

Connor Update  20/11/2012

Hello our dear family & friends,

I know you are all as devastated as we are to learn that Connor’s tumor has started to spread.  I’ll give you as much information as I can.  It is very dire and he is fading before our eyes.  I feel my heart breaking for our beautiful son.

After we returned from the US Connor seemed so much better…healthy and ready for rehab.  He went to school 2x/week (half days) and his friends were fantastic walking him to class, having lunch with him, looking after him.  He also started formal rehab: OT, physio and speech.  He and I continued to swim 1-2x/week working up to a kilometer (40 lengths of 25 meter pool). Scott and Connor went to the gym every Fri am to lift weights and do the ergo (stationery rowing machine)  He was pretty happy and Nick & Hannah smothered him with love & attention.  He started doing a “mirror box therapy” to condition his right hand…it really seemed to be working. A good friend came to do reading with Connor 2x/week and he was improving rapidly.  He was busy but it was “all good”.

Scott threw a wonderful surprise 50th BD party for me (Oct 20) and I was soooo happy to have Connor there and we danced and he stayed until 10:30.  The following week he went through a week long graduation celebration with his classmates…every day different activities happened at school with the culmination being the “Beating of the Bounds” whereby the Year 12 boys visit all 3 campuses of the school…walking around with a ceremony at the Jr School (grade school), Middle School and High School.  Connor walked the entire thing and enjoyed himself immensely…Scott and I were SO happy/proud of him.  That night was a formal dinner in the city for the boys and their parents.  The school presented Connor with a check for $23,000 from their fundraising efforts.  It was very emotional and moving.  Again, Connor was great and really enjoyed himself.

Then, only a few days later,  ever so subtly I noticed some changes.  He seemed a bit more tired, his walking seemed just a  little less balanced.  On Wed 31 Oct, we were having lunch with friends and he got sick, threw up everything he had just eaten…my heart missed a beat…warning bells started going off.  He seemed OK after that but I was on “heightened state of alert”.  On Thur evening we were watching TV and Connor started speaking in jibberish…it only lasted a few minutes but it was scary.  I immediately texted his radiologist (Greg Wheeler) and he thought it might be a “focal fit” (seizure related) and to keep and eye on him.  That weekend was a 4 day holiday weekend (for the Melbourne Cup Horse races)…Connor seemed OK but had moments of being dizzy and threw up a few more times. I was in touch with Greg and he organized an MRI for Connor on Thursday 8 Nov, Scott was out of town so we agreed to meet on Monday 12th to review the results.

In my heart I knew it wasn’t going to be good news…we kept trying to hope that it was a virus or possibly a problem with his shunt…but the moment we saw Greg’s face, we knew.  Our worst nightmare was confirmed…the original tumor hadn’t grown and was actually smaller…so it had responded well the the radiation.  But as Greg explained parts of the original tumor had broken off (small cells) and were setting up camp elsewhere.  They found 3 more spots…the largest one sitting on the part of the brain that controls movement…hence Connor’s rapid slowing down in walking. Seeing these foreign masses in Connor’s brain is nauseating.

It was a difficult meeting, Connor was very upset.  A lot of hugging and crying.  Terrible news after an already devastating 12 months. He really believed he could beat this thing and get better. Can you imagine how he must feel after feeling so bad  for so long? What teenage boy needs to be dealing with what he has had to deal with?  Pre-brain tumor Connor was actually looking forward to the tough year of school before him…he knew he was bright and was ready to do well. He could not, could not wait to row and had high hopes to make the 1st VIII.  He dreamed of maybe rowing at a college in the US. His PSAT/SAT scores were so good he was getting invites everywhere. He loved to hang out with his friends and just a be a happy, go with the flow kid.  He could not have been stronger physically or mentally.  Just on the brink of young adulthood…all snatched from him.  It is unbearable to think about and so incredibly unfair.  I know this line of thinking is not going to get me/us anywhere but it is all rushing on top of me now.

The options for Connor are not great.  I know I need to be strong and positive and I will do everything I can to be clear headed but the doctors want us to know the odds are stacked against him.  Chemo is his only option now.  They can’t re-operate as parts of the tumor are too difficult to get at and I presume these break away cells are too small and there is no guarantee they won’t crop up elsewhere.  They can do a bit more stereotactic radiation on the new tumors and they will consider after chemo.  The chemo they have used in the past on Connor’s type of tumor have only been successful 25% of the time.  Greg Wheeler has made contact throughout the US…St Judes in Memphis, the head of pediatric oncology at Milwaukee Childrens (Jana Pagel knows him and put Greg in touch with him) and with top PhD oncologists at Dana Barber in Boston.  The Boston group have reviewed Connor’s scans and have emailed a recommendation.  We think its to try a combo of 3 different drugs, lasting 6 weeks.  Mark Rosenthal, the Melbourne oncologist we are dealing with, (he is the top guy here) is away and can’t meet with us until next Thursday.  This is grueling too but Greg assures us waiting a few weeks to get started won’t alter Connors chances…but still…he is fading and we are beside ourselves to get started!

So that’s where we are…I wish we were anywhere but.  Connor is soooo brave, its incredible….no matter what happens, I will be in awe of him for the rest of my life.  Never, never a complaint…and if you could see how difficult every single thing is for him you would be in awe too. So loving, so kind, so thankful!  I told him I would change places with him in a second if I could and he said he couldn’t bear to see me go through what he is….he is soooo beautiful! I told him I was so happy I got to be his mom and this is so true, especially the last year, I’m so glad I could be there for him every second of the day…what he has given back to me (and I know our entire family) is more than profound.

Thank goodness Scott is holding it all together, much more pragmatic, focused on the next stage…I’m so lucky to have him too while I fall apart at the seams.  His quiet, strong, practical resolve gives me a huge amount peace.  And Nick & Hannah, well, simply amazing too. Their undying love and patience and positive/fun energy flowing into their brother every day.  I see glimpses of the parents they will (hopefully) be one day and it fills me with happiness.  The 5 of us are sticking together…non of us leaving the others for very long…it feels very good being together.

I will update again after we met with the oncologist on Thursday.

Please continue to hold Connor and our family close to your heart.