Liz’s Journal – Entry 7
Avastin Continues 28/2/2013
Connor has always had the ability to express his thoughts and views in a clear and concise manner. I’ve admired this about him since he was a little boy. He’d often make a statement or observation said so simply yet profoundly, it would leave me staring at him in awe. A few weeks ago, he turned to me and said, “Mom, I feel really old”. That was it, nothing more, but typically speaking volumes. I tried to make light of it and responded, “Which aspect: having no hair, a body that is difficult to move or a memory that doesn’t want to remember? My goodness Connor you must feel at least 150!” “Well, maybe not 150”, he said “but certainly well over 80”.
I often think back to late November 2011 waiting at the Sandringham train station for Connor to arrive. He had gone into the city to do some extra sculling on the Yarra River with one of the coaches. He kept falling in and he (we!) couldn’t figure out why so he asked the coach to work with him separately. I saw a gorgeous young man exit the train station; he was noticeably tan, tall and strong. So healthy looking! He looked more man than boy. He was wearing a bright blue polo, which didn’t look familiar. He walked towards the car and as he got closer his face lit up with a beautiful smile, so happy to see me…it was Connor! I felt a warm glow. We had made it past those tricky early teenage years and he had matured into this really nice, kind and in my biased mother’s opinion, handsome 17 year old. He was wearing a shirt his coach had given him as again, he’d fallen in and didn’t have a change of clothes. I still find it difficult to believe a short 3 weeks later he would be undergoing brain surgery to remove a tumour the size of an orange in the middle of that beautiful head. The mystery of why he kept falling in had been solved.
It’s been an eventful few weeks…hold on, the roller coaster continues. Two weeks ago, on Friday February 8, I decided to hire (rent) a wheelchair for Connor. I had been resisting this as Connor had emphatically told me last May to return the wheelchair he had been using since his surgery saying, “I will never sit in a wheelchair again”. I was happy (and hopeful) for his optimistic determination. He was making such good progress! So it was with mixed feelings I filled out the paperwork, leaving the return date open ended. Connor can still walk short distances, to the car and around the house but we assist him fully when he does. But it makes sense to have one for times we need to get around involving longer distances. I asked Connor if he was OK with it and he agreed it would make things easier for him.
Shortly after arriving home, I asked Connor if he wanted me to push him around the block. He agreed. My friend Karen was here with her new puppy so she and the dogs came along too. When we returned, after maybe a 20 minute walk, Connor wouldn’t speak. It was unusual; he had a glazed look in his eyes. I couldn’t tell if he was upset about being in the wheelchair and tried to address this. He understood what I was saying but just wouldn’t speak. After maybe an hour he started talking as if nothing had happened. As the day progressed he had more moments (episodes?) of not speaking. We all tried to cajole him but he wouldn’t budge. This continued into Saturday. Connor came with us to Hannah’s rowing regatta in Geelong (about 90 minutes from Sandringham) and didn’t say a word in the car or during the entire regatta. I could tell the other parents were concerned. He just sat there with no expression on his face. His friends came to visit later in the day. I jokingly told them Connor was on a speaking boycott, probably in protest of his brain tumour. They were able to get a few words out of him but not many.
On Sunday, Scott was up early to run with some friends. He went upstairs to check on Connor around 7:15. He came down and said, “Connor is covered in blood, its everywhere”. I followed Scott back upstairs and couldn’t believe what I was seeing. It looked like a major crime scene. Where had all this blood come from? His pillows were both completely soaked through, as were his sheets. It seemed to have come from his head as the blood was mainly pooled there. His entire head, hands and upper body were covered in it. There were long strands of something dark and sinister looking. Was this part of his brain? Connor was awake, but still not speaking. I asked him if he felt OK and he shook his head “yes”. I couldn’t believe he could be OK looking like this. Scott called Mark Rosenthal and he seemed to answer on the first ring. We have had this level of immediate support from all of Connor’s doctors, and it is extremely comforting. Scott explained the condition he had found Connor in. I am already imagining calling an ambulance; a hospital stay…was this going to lead to a coma? Then I’m hearing Scott say, “Ok, will do” and hanging up. Mark felt this was a nosebleed caused by the Avastin. The dark strands were blood clots passed through his nose. Mark suggested we clean Connor up and get back to him if it happened again or was any worse. Scott mentioned Connor’s not talking but Mark wasn’t sure if this was related.
Luckily one of my mom’s true talents is doing laundry and she didn’t waste any time erasing the signs of the “crime scene” as we called it. While we got Connor showered and looking like himself again my mom began a day of soaking, rinsing, washing and re-washing. I was feeling un-hinged. Connor was still not speaking and seeing this amount of blood coming from him, even through his nose was disturbing, to say the least. On Monday he was much the same. Even his gorgeous friends Ellen and Hannah couldn’t get him singing along with them when they tried to do some music therapy. It was difficult for Nick and Hannah too. Connor has been through so much and been so completely altered but his brother and sister have always been able to work their charm and get him smiling and joking…not this time.
Then, ever so slowly, Connor started to seem better. He started talking on Tuesday, a bit more on Wednesday and by the next weekend he seemed much more like his old self. My Mom said if she hadn’t been here to see it she wouldn’t have believed it. Connor’s second dose of Avastin was given on Wednesday 13 February. Maybe, just maybe, this very expensive drug might be doing something. We’ve been able to reduce Connor’s steroids to 2mg. Walking is still quite difficult but he is continuing with Pilates and yoga. He is smiling and joking with us again. It’s been quite warm here so we’ve taken Connor into the pool several times. We do easy kicking and moving around but he is quite happy moving with much greater ease in the water. In the last 2 weeks, Connor has gone to “Django Unchained” with friends, attended a Valentine’s party, rode along with the Brighton Grammar rowing coach to watch the boys train and attended a BGS 2012 reunion night the school organized. He came along to Hannah’s recent regatta and I think everyone was happy to see Connor a bit more communicative. So, he is out and about as he can and more importantly wants to be doing things.
Mark did suggest several weeks ago that he wanted to put us in touch with the palliative care service that is in our area. This must be the same as Hospice in the US. He said its better to be in touch and linked in with their services before we needed them. We said OK and a week or so later we were contacted. They left me several messages and I had a brief conversation with an extremely kind and caring nurse on the phone. I left it for a few more weeks, no matter how I tried to look at it; end of life nursing is depressing. They gently persisted and last week made their first visit. I told Nick and Hannah what was happening, saying it just meant we could get help looking after Connor at home for as long as possible. Hannah, for her young age, is very good at looking at the positive of any situation. I do love this about her. She said it was good they were coming, as it would make things easier for me. That having more support would make it less stressful for us. She’s right, it’s actually been OK and I have to admit it is nice having them a call away with any questions. They’ll stay “very much in the background” for as long as possible. They will make contact once a week and come to see Connor here once a fortnight.
Last Saturday night, after eating dinner outside again (sorry to our snow filled North American friends and family!) Connor, Scott, my mom and I had a wonderful “al fresco” music session. Nick and Hannah were out with friends. We decided to sing each of our favorites. We started with The Beatles “Here comes the sun” for Nick and Hannah. They played this repeatedly on the piano and guitar the entire time Connor was in the hospital. We sang Bruno Mars “The Lazy Song” for Connor. When this became a hit here around May-June 2011 I jokingly told Connor this was “his” song…listen to the words…this was Connor to a T!. Then we sang my mom’s favorite, Frank Sinatra’s “My Way”. I picked, as I always do, Coldplay’s “Fix you”. Scott went for a Bruce Springsteen medley. We finished by googling and watching the UW- Madison football fans singing “Sweet Caroline”. So good, so good, so good! Then finally, we watched and sang a rousing 5th quarter version of “When you say Wisconsin”.
Yesterday was my Mom’s 80th birthday. Everyone is so impressed with how good she looks and acts for her age. She had her hair done during the day, taking a Halle Berry photo along for inspiration! Last night the 6 of us went to the Stokehouse, an excellent restaurant along the beach in St Kilda. We had a perfect table with magnificent views of the beach and sunset. I’m so glad our family could be with her to celebrate her special day. It was a happy occasion for all of us.
Today Connor had his third course of Avastin (30 minute IV at Royal Melbourne Hospital). Mark Rosenthal is happy with how Connor is responding to this drug. He said it is still too early to make any sweeping predictions but so far he is pleased. He isn’t miles better but he certainly isn’t worse either. The drug company will now cover the cost for all future treatments, which is a huge relief. Connor will undergo treatment every 2 weeks for as long as it appears to be helping. Soooo, that’s where we are today. “Steady” might be the word we’d use to describe Connor at the moment and that is absolutely OK with us.
Thank you for all of your kind, supportive and loving words on the Caring Bridge guest page, Facebook, emails, text messages and in person. It does provide comfort knowing we have this wonderful web of care and concern to help hold us up.