Liz’s Journal – Entry 11

Connor’s Last 24 Hours  23/4/2013

To our dear, loving family and friends (and their family and friends and their family and friends):

As many of you now know, our beautiful son and brother has so sadly passed away. Words like devastating, grieving and heart broken can’t even begin to describe how we feel.  But we do know that he was amazing and the love he received from us and all of you and so, so many more has been more than profound.

Connor gave us a thrilling final 24 hours, filled with every emotion possible…he did it on his terms and it couldn’t have turned out more beautiful if the top talent in the literary world wrote it.

You’ve been along with us this far, its only fair you’re included in his final chapter.  I want to write it all down, before I forget a thing.

Early on Friday evening Peter McNeil (Connor’s surgeon/neurologist) stopped in to see Connor.  I had told him earlier in the day that Connor had such difficulty swallowing that he could no longer eat, that phlegm was collecting in his throat and becoming increasingly difficult for Connor to clear.  He asked if he could visit and I said of course.  Peter started this journey with Connor and it felt so comforting having him support Connor near his end.

When he arrived I was alone with Connor.  Scott was 13 hours into his 100km Oxfam trailwalker with 3 others.  This was Scott’s 7th Oxfam.  It is a gruelling, challenging event, especially when 4 “old” guys gave themselves an under 20 hour target. Scott’s sister, Deb, was out supporting Scott along with our dear friend Marek.  Hannah, our budding Aussie Rules footy star, was playing a footy match with her girlfriends and Nick was with friends.  Peter offered practical advice to help with Connor’s difficulty in breathing, held Connor’s hand and just kept us company.  He left shortly after Deb, Marek and Hannah returned.

Marek and I helped Connor into bed around 9:30. Peter suggested Connor lie on his side with pillows propping him and between his legs.  He said he should be turned at least every 4 hours.  He was happy to be back in bed and I kissed him and whispered lovingly in his ear, like I always do.

During the evening I had been glued to the TV watching events unfold in Boston.  It was the middle of the night in Boston and the footage and coverage was riveting. I was also checking the Oxfam website to check on Scott’s status.  Nick came home at 11 and helped me turn Connor around 11;45.  At midnight I forced myself to go to sleep.  I awoke with a start at 3am, I checked the internet, “Suspect #2” was still at large and Scott hadn’t checked into the finish, now 20 hours after starting. I called their support person, Jason and he said they had slowed down a lot towards the end but he expected them to finish at 3:40am and be home around 5am.  I got up to move Connor on my own and went back to bed.

Scott finally returned at 5:15am, exactly 24 hours after he left.  He was exhausted, his feet sore but happy with their result.  I asked him to turn Connor.  He showered and immediately fell into a deep sleep.  Hannah was leaving Saturday morning for a 5-day camp 4 hours away with her year 9 class at Firbank Grammar School.  She had finished packing before she went to bed.  She was worried about leaving Connor and we discussed whether she should go or not.  The palliative nurses can’t predict, no one can but Connor was for the most part stable and they said he could live days without food or water.  Hannah said she wanted to go as long as she could come home if she needed to. I called Jackie, the Head of Y9 at Firbank and Darren, the Outdoor Director and we worked out a plan if we needed to bring Hannah home.

I tossed and turned and got out of bed at 6:30.  I went to lie down with Connor, I snuggled up next to him put my hand in his and rested my head on his shoulder.  Peter suggested very cold fluids might help his swallowing so I gave Connor a few scraps of frozen pineapple juice and he swallowed, he seemed so happy to have something cool and sweet in his mouth. Hannah and I left at 7:30; Deb came in and helped me turn Connor before we left.  Hannah leaned over Connor and told him she loved him very much.  Connor mouthed, “I love you too”.  That gave Hannah the confidence she needed to leave.  Deb stayed at Connor’s side while I was gone.

I returned home at 8:15 and Deb was quite concerned about the mucus build up in Connor’s throat, he couldn’t clear it.  I called my friend Di, a physical therapist, who had been a big help the day before helping to clear his throat. She came immediately and was able to help Connor clear a lot of fluid.  His sheets were wet and we decided to quickly change them.  We moved Connor to a chair, I changed his shorts and put on his favorite Brighton Grammar gym shorts.  While I was doing this Connor suddenly gasped for air and passed out.  He turned immediately blue and unresponsive.  We screamed for Scott who came in from a deep sleep and helped us struggle to move Connor to the bed. We had called 000 and the operator was telling Deb what we needed to do, she said to move him to the floor and put him on his side.  Nick came down from his room and immediately began to help. It was terrible.  Our gorgeous son who had been through so much and this was going to be it.  I couldn’t watch him die.  I went into the hallway, I could hear everyone yelling “come on Connor, hold on” and I was whispering to myself, “you don’t have to hold on anymore, you are free to go, I love you, I love you, I love you”.

The paramedics arrived in what felt like minutes, just before it seemed Connor was taking a few breathes, he was coming to…this was not going to be his ending after all.  As I write this I am still in disbelief, I cannot believe he returned. I knelt beside him and whispered loving messages into his ear.  The paramedics cleared his throat.  We called the palliative nurses and they arrived.  Peter McNeil was on the phone.  We discussed our options.  It was obvious the end was imminent.  They could take Connor to a hospital but we had worked so hard to have him at home, we couldn’t bear him leaving now. The lead paramedic, Paul was so strong and kind.  He gently guided us through a plan.  They moved Connor back to his bed, wrapped him in blankets, his body temp was 31 degrees C (88F) and left.

By now it must have been close to 11am, I talked with the palliative nurses and they felt Connor might live through the day but probably not much longer.  It was the first time I’ve seen Nick really, really get upset since all those months ago in December of 2011.  I was so sad for him. I quickly called Jackie at Firbank.  We needed Hannah home with us. Michelle and Sharon, 2 mums whose daughters are very good friends of Hannah’s, jumped in their car to collect Hannah, now 3 hours away. I then called Father Tony Poole, the Parish Priest at Brighton Grammar.  Tony had reached out to me a few weeks earlier, finally reaching me on his third try.  He said to call him whenever we needed him or if Connor needed him. It was time, we needed him.  He said he would come immediately.  I said Hannah would be home at 5 and I wanted her with us.  He said, I’ll come now and again when Hannah returns.

I told our friend Jenny what had happened, asking her to let others know.  I said we couldn’t have visitors and not to have anyone call.  Marek returned and it felt right having him here.  I texted Connor’s closest friend, Brodie to call me immediately.  Within 5 minutes he was walking through the door.  Nick was sitting alone with Connor and the two had an emotional embrace.  Brodie stayed awhile and then joined the others at Jenny’s’.  I called my mom and Scott called his. As Jenny was calling the ones here who love Connor most, it was obvious they needed to be together.  They started to gather at Jenny’s…in the end over 60 people came…Connor’s closest classmates, their parents, good girlfriends.  Connor’s courageous battle was coming to an end and they needed to support each other and grieve for their beautiful friend.

Tony arrived around 1.  We had been taking turns sitting with Connor.  I had a very removed almost peaceful feeling. I knew this was it, I just wanted Hannah home and then it didn’t matter.  I knelt next to Connor and said “hold on, Hannah will be home soon and then you can go.” Tony was so kind and I couldn’t believe we were talking logistics about what would happen when Connor died. It felt surreal, why were we having this conversation?

The four of us and Deb gathered around Connor, we knelt down next to his bed and put our hands on him.  Connor’s eyes were open but with a far away look. His breathing was laboured but steady. Father Poole anointed Connor and prayed for him.  It was so moving.  When he finished, I leaned in Connor’s ear and said, “you’ve fought the good fight, the best fight.  You are the bravest person I have ever known, I will be in awe of you for the rest of my life.  We all love you and will always love you, you will live inside us and we will celebrate you for the rest of our days.”  Scott then leaned over and said simply, “I love you” to which Connor mouthed clearly enough for us all to see, “I love you too”.

Tony left with a plan to return at 6pm. The rest of us settled in, taking turns with Connor, doing various household jobs. I noticed on TV that “Suspect #2” had been taken into custody and Boston was celebrating. Scott decided to go to Jenny’s and spend time with the boys.  He went for 20 minutes and it was special for him and everyone there.  Nick invited two close friends over. At 2pm, I lay down on our bed, which is directly across from our living room where Connor’s bed was, I could watch him while I lied there.  In three hours Hannah would be home. Friends were texting loving messages and Hannah had just been collected by Sharon and Michelle. She and I had a long conversation, almost an hour long.  I was keeping her company as they sped back to Melbourne telling her exactly what had happened.  She wanted to hear every detail and I gave it as best I could.  She asked if Connor would make it until she returned and I honestly told her I didn’t know.

At 3pm with Connor resting I started to feel that this would be his closest friends last chance to say good-bye.  I called our dear family friend Karen and invited her, Stephen and Holly & Emma over.  They were with the big group at Jenny’s and said it felt so special being all together.  The entire Lomas family, along with so many other families are so close to Connor, to us. They came and I asked Cathy and her son Ben to come next.  After that I said the others could come, if they wanted, but only 1 to 2 at a time and only for a few minutes.  I had our bedroom door shut but I could see them walk up our sidewalk, some came in and gave me a hug.  I was glad there was time for this to happen.  I watched small groups gather on our front porch, hugging and crying.  Over 20 friends came, each one having a special bond with Connor.

At 5 I said we couldn’t have any more visitors.  I wanted just our family here when Hannah arrived.  Marek took our dog, Maddie for a walk and ended up at Jenny’s. At 5:15 Hannah walked through the door, she made it! We all celebrated and she hugged and hugged Connor.  She and I went to our bedroom for a minute to have our own cuddle and Hannah said, “he doesn’t look good mom” and I said, “I know, that’s why we needed you here.”  Connor, who had been so cold in the morning was now quite warm, we starting peeling back all of the layers we had put on in the morning. Deb gently told me that the palliative nurse told her extreme temperature changes were common as a body shuts down. I looked in his face and he tried to move his mouth.  “You love me?” I said and I saw a faint nod, and I said “I know, I love you too and more and its OK, I always will”.

At 5:45 Patricia, Connor’s beloved yoga teacher, arrived.  I had texted her earlier and she wanted to come but couldn’t get here any faster.  She said she just needed a few minutes.  I shut the door and left them alone.

At  6:05 Tony returned.  We hugged Patricia goodbye.  I called everyone in to be with Connor.  We helped turn him, as his breathing seemed to be getting more difficult and gurgle-y.  We gathered as close as we could to Connor, his breathing so ragged and getting more so.  Tony began to pray and then said, “Its OK Connor you can go, you can go.  Your family loves you, they will always love you but it is time.”  He ended the prayer, I buried my head in Connor’s side, holding his hand, the others watched and cried and held him and within less than a minute he stopped breathing, the room was quiet.  It was 6:20pm.  Connor’s fight was over.  We sat with him for a long time, he took one last gasp and that was it, he was gone.  Scott closed his eyelids.

Our beautiful son: so giving and generous to us through his entire ordeal.  He waited until we could all be together. It would have been horrible if it had all ended 9 hours earlier but now it seemed right, it seemed OK. We didn’t want it to happen but we were prepared. He waited for Hannah to return.  He gave his friends a chance to say good-bye.  One more reason, amongst so many reasons, to be in awe and wonder of my beloved first-born child.

A few weeks ago some one said to me, “There is an awesomeness about Connor”.

With love and gratitude to each of you for joining and supporting us on this journey.