Liz’s Journal – Entry 8
Our Latest News 16/3/2013
It’s been an extremely long and difficult last 5 days. Many of you know what has been happening but wanted to bring everyone else to speed.
Last Tuesday, 12 March around midday, Connor had several severe seizures. He had just finished yoga with Patricia and another yogi, Adrienne. They felt it was a good session; Connor was able to work from a chair and lying on a mat. Over the last several weeks his strength and movement has continued to deteriorate, as has his ability to speak clearly or effectively. They had worked with his walking, encouraging him to exaggerate movement with his right leg (remember he lost most of his right side movement after surgery but had been rehabbing well. As his strength has gone the last few months so has his ability to move his right side).
We’ve had a string of unusually warm weather, 10 days in a row over 30C (nearly 90F). Keeping Connor cool and hydrated was top of all our minds. Most of the days we were able to get Connor into our pool and this was a very nice and relaxing (and fun!) time. Connor couldn’t do much so we mainly carried him around in the water and I tried to get him to do synchronized swimming and water aerobics. It was much easier on his body to be moving through the water.
After yoga, I was sitting next to him helping him eat some Asian noodles. A few days earlier I had dug out our home videos of when we first moved to Australia. Connor was 6, Nick 4 and Hannah 2. Connor really enjoyed watching them. At the time we were watching the Brighton Grammar 2000 Christmas pageant when Connor was in Prep (kindergarten). All of a sudden his went into major convulsions…it was something he clearly couldn’t control and very distressing. Luckily, our cleaner Ruth was here. She immediately called 000 (Australia equivalent of 911). She stayed on the phone and my Mom came in the room to assist. After a few minutes the seizure stopped but Connor seemed dazed and unresponsive. It took AGES for the ambulance to arrive. I was frantically trying to get Scott on the phone and reach Mark Rosenthal. Connor had 2 more intense seizures before the ambulance arrived (30 minutes after we called). Ruth stayed on the phone the entire time and gave instructions on how we should be helping Connor.
The paramedics were excellent. They quickly gave Connor a shot of Clonazepan, which stopped the seizures and put Connor to sleep. It was extremely hot (nearly 40C) and I was so worried even about transporting Connor via ambulance. They were worried about his oxygen levels and put in a breathing tube.
My friend, Jenny drove me to the Alfred hospital, and Scott met me there. Another friend, Una collected Nick and Hannah from school and brought them in. Because it was such a hot day the ER was packed. They gave us a nice room to wait in. They did a CT scan of Connor’s head and a look into his lungs to make sure nothing happened during the seizures with food, bile, etc.. After a few hours they decided he seemed stable and would try to remove his breathing tube. I went home with Nick & Hannah and Scott stayed with Connor.
It took hours to remove the breathing tube but finally around midnight they were successful. They were moving Connor to a room and Scott came home around 2am. I returned to the Alfred at 9am after dropping Nick and Hannah at school. Connor looked sooo tired but tried to smile when he saw me. I brought in some watermelon and fed him a few bites. He had on an oxygen mask but a nurse came and removed it. About 15 minutes after I arrived Connor started another seizure, it was quite intense and I ran to get help. He settled after a few minutes and looked miserable. They moved his room to a quieter section. He again had another seizure and they gave him a shot of Clonazepan. He slept the next 6 hours.
It was obviously quite serious and the doctor had a serious discussion with me. They would make him comfortable and try to get his seizures under control. But there would be no resuscitation or ICU for Connor. We knew this time was coming, we hoped it wouldn’t and its devastating. “Its the beginning of the end” Mark Rosenthal told Scott. Connor has been the strongest, bravest, kindest person through this entire “ordeal”. I will forever be in awe and admiration for the joy, love and fun he has given us the past 15 months. Never a complaint, always a smile. I know each of us loves him with every fiber of our being but this is no life for him. I will cherish every second he gives us but in my heart I can’t be too selfish and I know Scott, Nick and Hannah feel the same.
On Saturday January 26 I was driving Connor to a friend’s for a BD gathering. It was a few days after we returned from New Zealand. As I was driving he said to me, “Mom, I don’t think I can do this much longer”. I replied by saying, he was amazing and what he had already done was incredible. Then he said, “I’m sorry if I can’t make it”. To which I said he never had to apologize for anything…nothing that had happened was his doing or choice. His words have echoed in my head since then. Everything is difficult and getting more difficult. He really isn’t able to enjoy life or participate in it. It’s so cruel and unfair but this was not a choice of his or anyone’s.
Since Wednesday he has stabilized well. After not eating for a few days he is back on food and hungry! He had three good meals yesterday and again today. They did an MRI on Thursday as there was a question if some of the swelling they saw on the Cat Scan was caused by a viral infection or what they called Herpes 1. The MRI showed the tumor has spread and progressed (this was NOT a surprise to us). Connor would not have deteriorated to this point if all was good in his brain. They still couldn’t rule out infection 100% by the MRI so yesterday the did a Lumbar Puncture to test his spinal fluid. We are still awaiting results. The doctors don’t feel this is likely but are treating him with an anti-viral drug, just in case.
Connor’s brain surgeon, Peter McNeil and his radiologist, Greg Wheeler have both come to visit him. Neither of them work out of the Alfred so they have made a special trip to see him. They are both in touch with Scott and I almost daily via texting and calls, as is his oncologist, Mark Rosenthal. These men are professionals and very good at their jobs but they are people too and I know they all care very much for Connor and our family.
Connor is on Keppra and Dilantin and since Wednesday evening his seizures seem to be under control. He hasn’t left his hospital bed and honestly doesn’t seem to have the energy to do much more than eat and nod his head when we talk to him. Occasionally he tries to talk and I love when he says anything as I adore the sound of his melodious, calm voice.
We have talked with the palliative care people and the plan is to try and bring Connor home on Tuesday. They can supply a bed and anything else Connor needs. The IV drugs he is in can be taken in a liquid form as swallowing is difficult. The palliative nurses can visit our home daily and we will investigate getting additional care.
Hannah and Nick continue to amaze me. They are so concerned and their love for Connor is so real. But they are “carrying on”. Hannah is at the Head of School Girls Regatta in Geelong. It’s the culmination of the entire season. For those of you who know rowing know that the boat can’t go unless the entire team is rowing. Connor is Hannah’s number 1 fan and she knows this. On Tuesday we talked with Hannah and it was no question she would row this weekend. I called the Head Coach and let him know. If she was unable to row it would trickle down to all the other boats. She’s held it all together and they easily won their first race and are on to the semi finals in the morning. Nick has his major APS (Conference) swim meet on Wednesday night. He had a trial meet today and had to race for a spot in a relay, which he made.
I know what I’m going to say is my way of coping…but I can’t deal with this in any other way. I’ve told Nick and Hannah that none of us gets to choose how long our life is…that Connor was only given 18 years…but those 18 years and his life deserve to be celebrated. We need to focus on the special person he is and the amazing gifts he has given to all who have been lucky enough to know him. My heart is breaking and has been breaking in a million pieces every day since that horrible Monday, the 12th of December, 2011. My beautiful son: warm and funny and loving and kind and smart and philosophical and strong and brave and gentle. I feel so blessed.