Liz’s Journal – Entry 5

Happy New Year!  16/1/2013

Happy New Year everyone.  I apologize for not updating sooner but it has been very busy.  My cousin Leslie and her three teenage daughters arrived on January 1 and we all had a wonderful 10 days together.  The weather in Melbourne has been beautiful this summer (yes, it’s summer here!) so we’ve had lots of beach outings and swimming.  It was fantastic to see the 5 cousins (with Connor watching) playing cards at all times day and night…they didn’t seem to need much more to entertain themselves.  It was very nice to have their help, company and love

Connor is, for the most part, doing OK.  He completed his 3rd round of chemo last Friday and Mark Rosenthal, his oncologist, is very happy to see Connor looking and seeming so well.  His expectations are not huge, as I mentioned before.  So he is pleased that on many factors he is doing well.  Mark doesn’t want to have a MRI too soon as he’d rather get through Connor’s treatment first.  He will have another round in a few weeks and if still doing well will have a 5th and 6th round.  Connor is mostly alert, he does get tired but this is to be expected.  He sleeps most afternoons for an hour or so but then stays up til 10:30 and is awake by 7:30.  His movement isn’t great and we assist him to make sure he doesn’t fall.  His bowels and bladder are still unpredictable…usually good but sometimes not.  We just have to be organized when leaving our house and have a plan in place if something happens.   At the moment, he is quite constipated, the complete opposite of a few weeks ago! We’re trying a few different things to get that back on track.

Overall, I wouldn’t say he is markedly better but then not much worse either.  He still does yoga, music and Pilates each week. We had a wonderful night of music therapy with the cousins.  This basically means we sing as a group any song that catches our fancy (and usually quite loudly!).  We always include Bob Marley’s “Three Little Birds” as this is a favorite of Connor’s.  Connor is always happy to sing and its always a special time.

Its difficult to look ahead into 2013 and wonder what the year will bring.  In my heart of hearts I know the odds are not great that Connor will get much better than he is now.  Every morning I wake with a start and realize its all true and happening…not just a terrible nightmare.  Then I walk upstairs to see Connor and I am SO happy that he is OK, it’s a relief and I think to myself, yes, we have today.  I am grateful and I know we all are to have him here with us.  People tell me not to give up hope…of course not but at the same time we need to be realistic and I talk to Connor and Nick and Hannah and Scott…together and separately…trying to make sense of something so unfair. I’m not sure if the talking helps but it seems like something we should be doing.

A few weeks ago a friend asked if Connor had a “bucket list”.  Without hesitating I told her I feel like we live our life like a Bucket List.  Our cars are 15 and 9 years old as we’d much rather travel and do than invest in a new car.  I am genuinely happy with the life Connor has led, the opportunities he has had and taken. The kind and sensitive person he has become. We talk often about his trips and experiences and he happily remembers most of everything.  I’ll list a few, not to boast but to celebrate.  His life going forward, whatever shape it takes, will be hugely different from his first 17 years. I’m not sure what to call this…if Bucket List is the things you want to do then this might be the “Heaps List” (many (heaps) things that were lots (heaps) of fun!).

Here goes: “Connor’s Heaps List”

He has a passport in 2 countries and has lived in 3

He has his PADI scuba, boat and motorbike licenses.

He has climbed to the top of: Ayer’s Rock, Cradle Mountain and the Eiffel Tower.

He has hiked across King Island, done the Milford Track and Queen Charlotte’s Walkway.

He has been on a safari at Kruger Natl Park (and was our official “bird species sighting” list keeper (who knew that would be so exciting amongst the elephants and lions?!)

He has bungy jumped, snow boarded and wake boarded.

He has been to a Packer game at Lambeau Field and watched the Badgers in the 2011 Rose Bowl.

He visited an Orangutan Reserve in Borneo, went to Papua New Gunea for 2 weeks with school, learned to trapeze in Bintan and sea kayaked into ‘hongs” in Phuket.

He has camped along the shore of the Murray River for years with family & friends and in various campsites throughout Wisconsin with his Dad, Uncles, cousins and siblings.

He has flown in to the Grand Canyon in a helicopter, attended the Henley rowing regatta and been through Venice in a gondola.

He insisted we wait 4+ hours to see David in Florence (and said it was worth every minute).

He quickly devoured pretty much every book series available to him growing up including (but certainly not all): “The Series of Unfortunate Events”, “Harry Potter”, Alex Rider”, “Lord of the Rings” and “Twilight”.

He happily visited every museum and/or special exhibit in Milwaukee, Wellington and Melbourne.

He has played the piano and saxophone and appreciates a wide range of all types of music from Classical to Rap.

He has a keen eye for good television and picked up on “The Wire” and “Breaking Bad” before most people had even heard of them.

I could keep coming up with things…but you get the idea… for his age he is well travelled and well read. So interested which made him interesting.

And on that vein, we’ve decided to go to New Zealand to visit our dear friends the Russons’ for a week, leaving on Thursday.  We haven’t been back to Wellington to visit as a family since we left 13 years ago.  It will be nice to visit all our favorite spots and then head to Taupo for 5 days of boating and fun.

One day at a time and keep on making memories…..

Thank you for all your supportive and kind comments on the Caring Bridge Guestbbook.  I can’t respond to them but I want you to know I read them all (and read to Connor) and they mean a lot!

I’ll update again in a few weeks after Connor’s 4th round of chemo.

With love and genuine gratitude,  Liz