Liz’s Journal – Entry 6

New Treatment For Connor  13/2/2013

I am sure I mentioned a few Caring Bridge entries ago that I do not like roller coasters.  Having a son with a critical brain tumour feels like the biggest roller coaster ride imaginable.  Every day, sometimes every minute, brings a new emotion.  I can fluctuate between laughter and tears…anger and joy…fear amd hope…patience and frustration all within the span of an hour.  I’m hanging on as best I can but I would lying if I said this was enjoyable.  But then peppered through each day are some really special and happy times.  See what I mean about roller coasters?

On the day after I wrote the last Caring Bridge update I noticed Connor fading a bit.  He took a spa (hot tub).  We are careful not to have the water too hot or have him in for too long…but maybe this day we over did it.  I helped him to our outdoor shower, he sat on a chair and I handed him the soap.  I went to get a towel and when I came back he had the bar of soap in his mouth.  He was so confused and disorientated he thought it was a toothbrush. My stomach lurched and that familiar sinking feeling set in.  It was difficult for him to articulate thoughts and he seemed much more tired.

The worry that I’m now always feeling was intensified as we were planning to leave for New Zealand in 2 days.  I didn’t have a good feeling.  The next day he seemed OK, not great, but not worse either.  Our flight to NZ was early Thur 17 Jan.  We had to wake Connor v early.  He threw up shortly after waking (never a good sign).  I suggested Nick and Hannah go without us.  Scott was scheduled to fly in later that evening.  Connor said, “C’mon Mom, I really want to go, I feel fine”.  Knowing this might be the most irresponsible thing I have ever done as a parent, we headed to Melbourne Airport.  On the way, I suggested Scott call Mark Rosenthal and explain Connor’s last few days.  I also had him fill Connor’s steroid prescription and bring more with him.   Mark suggested we double Connor’s steroids from 4mg to 8mg while in NZ.  Increasing dosage, he hoped, would help with any increased swelling due to the tumors growing/spreading and help with overall energy/tiredness.

We survived our week in New Zealand (Connor and me, everyone else was absolutely fine!) and our friends Ian & Nicky and their three children (exact ages as ours: 18, 16, 14) did everything possible to make it as relaxing and enjoyable as possible.  Upon arrival Nicky told me I was not to set foot in the kitchen…I could focus on Connor and she would take care of the food and cleaning (and hand me wine when I needed it!).  She is the consummate host/cook/entertainer.  Nick caught a trout one morning and she had it cleaned, cured in vodka/lemon and smoked in time for lunch! We had a wonderful time revisiting all our favorite spots during our 16 months in Wellington.  We then had 5 glorious days of perfect weather (not a guarantee in NZ) at their holiday home right on Lake Taupo. The kids skied, wake & skim boarded, fished, sailed, kayaked and cliff jumped all week.  They bungy jumped at the same place Connor and his friend Brodie did in July 2011. Connor was very quiet, didn’t move much and slept a lot.  But we did get him out for one boat ride and he joined us at the shore for a bonfire. We kept him company and surrounded him with love (as per usual!).

Mark Rosenthal had told us that he would only continue the chemo for as long as we felt it was working and we wouldn’t need an MRI to know.  It was very obvious to Scott and me (and Nick & Hannah when they honestly thought about it) that Connor wasn’t the same, he was deteriorating.  Mark also said he’d need time to make any changes in treatment and to give him as much time as possible.  We returned home late on Thurs Jan 24 and Connor’s next chemo was scheduled for Wed 30 Jan.  Scott was in touch with Mark upon our return, exchanging late night emails, and it was agreed we would try something new.

On Wednesday 30 January, Connor was given an IV drug of Avastin.  This isn’t chemo as it doesn’t target the tumor directly, its aim is to slow/stop the growth of new blood vessels (which malignant brain tumors depend heavily upon) and also help with swelling.  It is not covered under the public health system here or private insurance, as it is not approved for Connor’s type of brain tumor.  It’s extremely expensive (nearly $4000/treatment) so we are very grateful for the Brighton Grammar fundraising efforts! Connor will be treated with Avastin every 2 weeks for as long as there is a benefit. If it appears to be working after 3 treatments Mark will try to make a case to the drug company and there is a good chance some of the costs will be defrayed.

Here we are a week and a bit later and we do think there has been a slight improvement.  Mark told us to keep our expectations to a minimum.  He said staying the same or slightly better would be good news…so, we’d have to say, it might be helping.  We’ve been able to reduce Connor’s steroids back to 4mg (from 8mg) and may possibly reduce to 2mg early next week if he continues this way.  Connor isn’t as tired and has a bit of his personality back.  Walking continues to be very difficult and we assist him wherever he goes.

Scott and I had a very serious discussion with Mark and he feels this should be the last course of treatment for Connor.  He walked us through what will happen if this drug doesn’t work or work well or for very long. It’s actually so sad I can’t bear to write about it now…so I won’t. I’m not in denial, in my heart I know what’s ahead but I just can’t emotionally think or write about it today.

It’s been a long 15 months (that’s an understatement!) but as I said, almost everyday there has been some very special and happy moments.  There are many parts of Connor’s brain tumor “journey” I want to forget but some things I want to remember forever.

I want to remember Connor’s unique sense of humor. Its always part of what makes him so much fun to be around.  This may horrify you but one of Connor’s greatest joys this past year is to pretend he is sleeping or dead when I walk in the room!  I know! He knows I worry about him being tired (or dead!) so he likes to give me a hard time.  Then he laughs…  Ah, like I need this!…but it makes him happy, so I just go along…and actually since he is joking, I do feel better.

I want to remember Connor’s outpouring of love and support for Hannah. He never misses an opportunity to compliment Hannah or encourage her or to say to me. “Hannah is a cutie” or “She’s pretty amazing”.  I find this so nice for Hannah as pre brain tumur Connor was a very typical 17yr old…he loved his sister sure but he was usually telling to her “stop trying so hard” or “caring so much” about her schoolwork and rolling his eyes when she got excited about, well, anything!

I want to remember the ease of which Nick helps Connor (and keeps him company) with such a loving and fun manner.  Connor and Nick have always been very close and I can only imagine how Nick misses the “old” Connor but he never shows it. He goes out of his way to entertain him and make him laugh and just be with him. Months ago Nick asked Connor what he did that day to which Connor replied “not much”.  Nick said, “So, you sat on the couch like a big pile of poo?”.  Connor laughed…don’t all boys find talking about poop funny?  From then on Nick called him “poo plop” and its stuck…we all call Connor “poo” or “poo plop”.  And not surprisingly it still makes him laugh!

I want to remember Nick & Hannah’s resilience.  People often ask how they are doing.  I‘ve mentioned this to them and Hannah has said to the effect “Connor is getting more attention because he has a brain tumour, I’m OK with that”.  When I compliment them for being so good to Connor they both say “why wouldn’t we be?”.  Naturally, they have some big moments of being very emotionally upset…but I admire how they are going on with their lives…as they should, as Connor would want them to.  They are busy with school, sport and social activities just like all teenage kids.  I know Connor is never far from their thoughts but they are carrying on and I’m glad they are.

I want to remember how Connor, almost above all else this past year has wanted to make sure Hannah and I know he loves us.  He tells Scott and Nick often but he REALLY tells Hannah and me. He must tell me he loves me 20+x/day. He says the most wonderful things to me, like:

You are an exceptionally good mom

It’s actually amazing how much I love you

You are a beautiful person

Thank you for not giving up on me

You’re a very giving person

You’re actually really fun to be with

We have a cute exchange…he says “I love you” and I say “I love you more” to which he says, “yeah, you probably do”. ..then we laugh.  And its probably true…us moms do love a bit more, it’s just the way it is and I’m OK with it J.  I wish more than anything he was having a “normal” 18 yr old life in which I might hear the occasional “I love you” but given the circumstances I feel very blessed we’ve had this special time together.  I really couldn’t feel closer to him.

I want to remember Scott being so stable, supportive and level headed.  Early on, when Connor was still in the hospital, I said to him, “what if Connor always has to live with us?” to which Scott replied, without hesitation, “then he’ll always live with us.”  And that was that, so easy and it didn’t seem like a burden then, just the way it might be. And much later, when Connor began chemo, I said “how will we be able to go on without Connor, if he dies?” and Scott said simply, “we’ll go on, we’ll have to and we’ll figure out a way”.

It’s been so nice having my Mom here.  When I picked her up from the airport, we hugged and as we walked out I told her I kept thinking about my Dad, how sad he would be if he had lived to see this happen to his Grandson.  Telling her that her living a long life meant she had to witness this.  And my Mom, in all her infinite wisdom (and she actually has wisdom in spades) said, “that’s life…there is no guarantee, you get the good with the bad.”  Then she said, “I’m very happy I’ve lived and I’m here so I can be a support to you and your family”.   Me, too.