Update - 3rd May 2009 - Sadly – Jack passed away last night
2nd May 2009
Jack remains sedated. He now lies in a prone position in order that his lungs might have an opportunity to benefit from
the change in posture and a chance to disperse the build up of fluid. Jack has become swollen from the necessary transfusions
of fluids. Fluids and medicines, which are required to maintain his blood pressure and other vitals.
Yvonne and I understand some of the mechanics of the cancer and can interpret the ‘numbers’ associated with
the disease and its activity but we have no instinct or understanding of this situation. The monitors and blood chemistry
provide little of meaning without the interpretation of Jack’s doctors and nurses.
It is quiet. And with Jack’s state of sedation and swollen appearance I am left to ignore the numbers and believe
in the battle within - believe in Jack.
I have no doubt of the ferocity of the fight. But it is contained, shrouded by Jack. Jack’s body demonstrates the
pressure from infection it contains.
Jack’s on a hill-top, a knoll with slick sides dampened and threatened by darkening skies. A boiling horde surges
about him but he stands.
Jack’s adrift in a boat on a sea of malign peaks and sucking subversive troughs. Acid waters attack his craft but
he sails.
Jack walks in a desert, taunted by phantom glades and cooling pools. Slipping sands persuade him to rest but he journeys.
Later on 2nd May 2009 the doctors have dispelled any illusions we might have harboured about the extent
of the infection.
Jack’s lungs remain in poor condition and fluid also pools between the lungs and the chest cavity.
Fluid, which Jack should be excreting in his urine, is building in his body and the acid level of his blood continues to
move from the normal range.
We are changing the medicines as we speak to try and rearm Jack and prevent his body being overrun. It appears that within
the next 4 to 12 hours we will know if the new ammunition might tend to redress the balance his body requires.
Jack remains stilled. Connor and Rhian have both seen Jack and held his hand. Both have been his recharging stations for
the last four years. Minutes in their company have always led to a boost in Jack’s power. Jack has become enlivened
in an ordinary, fresh unassuming confidence. Jack has always been wholly restored to his rightful station by Connor and Rhian;
they have provided him with an ability to be a child. It is with sadness and leaden disappointment that we must allow them
to see Jack and for them to realise his plight. It is with joy that we witness their love for their brother.
They have done enough for now and returned to friends.
We wait for the next tests due in 30 minutes, (3:30pm), that may suggest Jack’s trend.
It’s a beautiful day outside. For perhaps the first time in his relationship with hospitals, Jack’s window
provides a panorama. The tiers of the Adirondacks stretch beyond the west bank of Lake Champlain. Tears of a different formation
have flown on the east bank. There is an erosion of the mountain at the centre of our family.
There was a brief peak in Jack’s statistics and we clenched the figures and begged for a repetition. Please work.
At midnight we decided. No that’s wrong, for we never decided, at midnight we faced the formality and finality of
that, which had already happened.
All the medicines and efforts we had permitted were not answering Jack’s need. And perhaps we forgot Jack’s
need for a short time and our need trespassed his. Perhaps our want took precedence over Jack’s.
It was clear that Jack had found an escape from the cancer, had discovered his own route to peace.
We realised that Jack’s battle was over and that he had chosen to outwit his enemy and God had granted him solace.
We stopped the medicines and Jack’s body could, at last relax. Jack’s heart never failed, this heart, our heart,
had supplied hope and energy for all of us for long enough. Jack’s heart rested at 12:37am. We accepted his hope and
love that we might propagate these; his gifts. Yvonne held Jack and her embrace guided him as he left
Jack has been a magical mirror to our family and our friends. No matter how bad, how ugly the circumstances Jack would
transform – the reflection we saw, bathed by his light made our world beautiful. For 4 years the light that has shone
from Jack has revealed aspects of life otherwise unknowable. Jack revealed to us the potential for good and fostered the resolution
that hope is indefatigable
1st May 2009.
Jack is in room 319 on the 3rd floor of the Children’s Hospital of Vermont at Fletcher Allen Hospital, Colchester
Avenue, Burlington, Vermont, USA.
Jack’s been pierced, entered and entangled with new ports, new needles and attached to new vessels. Jack
has been damaged by design. Care invades Jack so that tubes might bring pain relief, might ferry sedatives and might refuel
his body with fluid, with blood and with plasma.
Jack’s ventilated; necessary in order that oxygen and carbon dioxide might flow through his lungs. I can
see Jack’s out-line and the rise and fall of his chest. Shallow movements, such slight activity – evidence of
that, which was happening deep inside
30th April 2009.
Jack became sick today. We didn’t notice until he turned up for a day’s work, battling cancer in the
transfusion bay. He had pain but Jack carries pain like an uncomfortable knapsack. Jack had no fever. Jack did not signal
for help, he carried his load.
But his blood pressure plummeted and his team interpreted the seriousness of his plight despite Jack’s refusal
to shout for help. I was not there but in the frantic rush to stabilise his system Jack protested at the efforts to insert
peripheral lines, “ No you are not doing it. Two’s enough for one day!”
Jack was transferred to the intensive care unit.
Before his sedation we, Mum and Dad, Connor, Rhian, Giselle and Jen gathered for UNO. We sat at his bed for one
more lesson from the master.
The game ended and Jack won. I cannot remember if he won the cards but I am sure that his gentle eyes gave all
of us what we craved in that moment.
Jack was stilled then.
