A Transition - a grandfather's perspective

The loss associated with Ben's passing is still acute, but I find my mind is going through a period of transition, from where grief was a burden, to a place where I am viewing his life as an inspiration.

I would never have imagined that a grandson could become a role model for a grandfather, but the courage shown by Ben is causing that process to evolve. Not just the courage he displayed during those last awful months, but the vitality and the way in which he dealt with the challenges of his life. For me of advancing years, the strength of character displayed by a grandson is a source of inspiration for those challenges that might lie ahead.

Memories of Ben's energy were with me this week as I viewed the wreckage from a severe storm. A garden strewn with trees and branches, fences down under fallen trees means much hard work ahead. My thoughts went to Ben who would have seen the exercise as a challenge, and I imagined that I heard him say, "just get on with it Gumpa!"

As time has elapsed since his passing I am beginning to see Ben in the image of Jimminy Cricket, not just on my shoulder but on the shoulders of family and the many seeking strength in adversity. That image brings me a sense of comfort as his courage and energetic personality will continue to be with me, whereas if I allow my grief to be a burden, then I risk setting him in history.

The moral of this story is that,"you are never to old to learn", and that grandsons can become role models for grandfathers.

Ralph, ( aka.Gumpa).

The Autopsy Report

"Autopsy results? Gosh, what do you want to read those for? Won't it be just like reliving those last couple of months?"

Well in one way, yes. The pain of the finality hits as the truth of Ben’s disease screams out at us from the autopsy. On the other hand we can be at peace, knowing that our death-bed decision to turn off Ben's medication and let him move on was the correct one. The report reads: "Following discussion with the family, treatment was withdrawn on 8/12 due to poor prognosis and lack of response and the patient passed away."

Saturday 6th: Ben's day out in his bed where he woke up in the sun and the breeze. "This is perfect" he said.

Sunday 7th: A shower in the morning but Ben's body was deteriorating so the doctors recommended putting him into a coma on a respirator again. He agreed.

Monday 8th: At 3am Chris went to the hospital as Ben wasn't doing well. About 9am the doctors told us that his condition was worsening and it looked like we might have to let him go. "I've got some pretty sick patients in here but Ben is by far the worst. I'm so sorry, this is such a shame. We can make some small adjustments but there is very little we can do."

By lunchtime the respirator was up to 100% oxygen but Ben's blood oxygen levels were still dropping. His temperature was high and he had ice packed around him. His body was only holding on due to the respirator, the oxygen, the blood pressure drugs, and the constant infusions of other drugs and blood products. "Numerous systems are in failure. He will soon start to develop small clots in his limbs, which will lead to necrosis in his hands and feet. His digestive system isn't processing any food. Despite glucose infusions his glucose levels are dangerously low." Earlier they had dropped to zero where the brain cannot function for much more than a minute without damage.

We consulted with various doctors and made the decision. Then we waited for Matt to arrive from school and said our goodbyes. The oxygen level was turned down to normal (21%) and the blood pressure drugs were withdrawn.

It was a terrible time watching his vital signs slip downhill so immediately. In less than fifteen minutes his heart stopped.

In a covering letter, Ben's specialist said he had no doubt that the rapidly progressing lymphoma was the cause of his death. The specialist said that from all the clinical signs and the findings of the post-mortem we could be confident that Ben could not have recovered due to the underlying lymphoma.

For those who are interested, we’ve copied a few details:

Cardiovascular system: nothing remarkable and the heart was a normal weight. Combined kidney weight was 500g, normal is 230-440. Left lung was 1109g (325-480 is normal) and right lung was 1168g (360-570 is normal). Liver weighed 3000g (normal is 1500-1800.)

The conclusion of the report refers to "a 23 year old male with NK/T cell lymphoma who died with neutropenic sepsis [an overwhelming infection that in Ben's case involved multiple organ failure, along with a low level of neutrophils - a type of white blood cell that fights infection] following a lack of response to chemotherapy. Lymphoma was found extensively in the bone marrow, lymph nodes and liver. The cause of death is diffuse alveolar damage in the setting of disseminated lymphoma."

Lindy

500 miles

Driving away from another place where you used to be. Another reminder
of your absence in a familiar place where you once felt at home. And
the people ask how we are going. I say: Fine. As expected. How can we
be?

We carry on without you, every day another step away-one more
day away from the you we knew.

Your music plays as I drive. "I would walk 500 miles" takes me back to
Tucumán, home schooling, jury-rigged physics experiments and "I hate
maths" (but you won that one) and cats on your desk as you studied and
"500 miles" blaring from your speakers.

I would walk 500 miles and I would walk 500 more just to see your smile again.

Six weeks

Six weeks ago today that last we saw your face.
Six weeks of Benless days and restless nights.
Six weeks of absence while you lurk in every room
space and every corner of our minds.
More present than ever, yet gone so far away.
---
We want to see him, hear him, hold him,
space but all we have is pictures on the wall and
space memories of smells and smiles and sounds of a voice,
space all growing dim.
Weeks to be grieved, to be touched by all we cannot touch again,
space the laugh and crooked smile, the humour and frustrations,
space the joy and bitter sweet of life with Ben.
Six weeks: time enough for some - “When Ben first died” they say,
space as if it’s past already - time for many to move on
space but not yet time enough for us.
space Not time to begin to understand. Let alone forget.
Six weeks to ponder, to think of life and death and heaven
space and how he’s resting now.
space Of whether he’s asleep or watching as we fret.
Weeks to remember. To remember a life fulfilled and overflowing,
space that cannot be robbed or lost again. No random tale told by an idiot
space but a life well lived… full of sound, some fury, and endless possibilities.
Yet every day that passes we leave him far behind:
space six weeks into the past and counting, adding up the hours
space since last we saw his frown and cheeky grin and brave goodbye.
---
Six weeks ago today we made your decision and watched as you faded away.
space Promoted to glory: “we will meet you in the morning
space when all sorrow has drifted away.”

Closing the CT chapter

Faithful followers of this blog have been waiting for this news with hunger pains for months. Now, finally, here it is: Ben's favorite recipe you've all been waiting for. Thanks Mama.


Chicken Townhouse

Ingredients:
1 oz. (25g) butter - - - - - - - - - - - 1- 420g can Cream Mushroom soup
½ cup diced capsicum - - - - - - - ½ cup whipped salad dressing
½ cup finely chopped onion - - - 100g noodles
½ cup frozen peas - - - - - - - - - - 2 cups chopped cooked chicken
Add other vegetables if desired!

Topping:
1 cup small bread cubes - - - - - - - 25g melted butter

Instructions:
Boil noodles in the usual way until tender, drain.
Melt butter, add capsicum and onion and cook until tender.
Add mushroom soup and salad dressing, stir together well.
Add noodles and chicken, mix lightly.
Season to taste with salt and pepper. Transfer to oven proof dish. Place topping around dish.
Bake in moderate oven for 30 minutes, or till bread cubes are browned.

The story behind the photo

The photo below is from Von. She says: This photo was post a
dolphin-searching-swim at Secret Beach in Mallacoota in 2006. Ben was
mulling over whether it had been the right thing to do, to lead
people, including some not-so-strong swimmers, out into the open ocean
to check out a few dorsal fins we spotted from the shore. It was a
really relaxing team day off, and I think the decision in the end, was
that it had been okay, in fact a 'once in a lifetime' experience to
see the school of dolphins so close. But besides the background story,
I was drawn to this picture by what it represents to me: Ben is
standing alone, out of reach. A leader; the first in our group to have
left this place for good. I hate it and love it. He's not looking at
us and he's not completely settled with where he's at yet, either. I
want to yell out at the Ben in the photo but am frustrated knowing he
won't hear. (Click the photo to enlarge it.)

Ben loved the beach

More tears!

As many of you know Ben and Tim have walked side by side for years. Ben would have graduated when Tim did three weeks ago, and both had applied to study medicine this year.

After all the study as well as the turmoil of 2008, last Monday Tim heard that he had been accepted into Medicine at Deakin University.

That too brings tears to our eyes.

Gone for good... from Chris

The deep aching pain rises up again as I realize he is gone for good. Like nausea rising from the stomach, it's a physical sensation that ends in tears and "Oh Ben... How can you be gone?" And I write it here because it helps me to share it with others who knew him and loved him.

Mallacoota memories

Today we leave for a few days at Mallacoota where Tim is a director of the Theos youth outreach. Last year Ben directed the team of 25 or so, and we were camp parents and cooks. It holds fond memories of Ben in his element: leadership, the beach and outdoors, young Christians mixing with totally 'unchurched' youth. Who could have known a year ago that Ben would not be back this summer?

Thoughts - from Lindy

It doesn't seem like the time to finish this blog. But perhaps that's because I'm still holding my breath and waiting for Ben to come back? Maybe it is time to finish after all?
Chris and I talked about the possibility of going back to the end of June and writing about the beginning; that growing lump on Ben's leg. How unbelievable that a lump which at first looked innocent enough could be so aggressive a cancer. It's been a huge six months. Would it be interesting to go back to the start?

In six months Ben was catapulted through radiotherapy and chemotherapy, biopsies on just about everything, PET scans, CT scans, countless x-rays and ultrasounds not to mention blood tests in the hundreds and major surgery. The nurses in ICU said they had never known the Blood Bank to issue so many units of platelets in one hit to one patient. You name it and Ben had it administered or tested or taken. Finally, in the last 12 hours when intravenous drugs weren't touching his high temperatures, he was packed in ice.

Would Ben have changed anything? Maybe. Maybe not. He surely would have wanted to change things in his character that he didn't admire. Would he change his last six months if he had known his cancer was terminal? I don't know that he would. He made every effort to say goodbye. The weekend when he was well enough to come home from hospital and went to Pete's 21st was an amazing opportunity to connect for the last time with so many friends who have stood by him through it all. Despite the whole cancer thing being frighteningly confronting when it appears in a young fit person, not one of his friends walked away from him or the situation. Thanks guys!