Monday, 10th August, 2009
I can’t get to sleep; even though I’m tired. I had already logged off ages ago but my mind is not shutting down as easily, so thought I’d update my blog, now’s as good a time as any really.
This morning, I came to Manchester with three prospective team Sky members wishing to visit our team HQ. I left home early morning, and on my way to the airport I was thinking about the great weekend I spent with my family.
The fantastic weather in Belgium definitely had added to the buzz to be felt in the Sunderland home and garden – we‘re very much an Aussie solar powered family - but I realised that the biggest reason we had all enjoyed our time together so much was my son Tristan (6).
Tristan
At the start of the school holidays in July, my youngest boy was rushed into the University Hospital in Gent (Belgium) after a blood test revealed an alarmingly low white blood cell count and other abnormalities. My wife Sabine had asked our GP to check Tristan’s blood as she had been puzzled by his dwindling weight gain and the multitude of bruises on his skinny little legs, stick legs we call them jokingly. We thought he’d be low on iron, or something easily alleviated with the right vitamins and minerals.
But now, suddenly the fear for Leukaemia was real. I was in Monaco at the time (had meetings scheduled before the start of the Tour de France) and I vividly remember hearing the tremble in her voice when Sabine called me with the bad news.
Assisted by my colleagues, who booked a flight and drove me to Nice airport, I made it to Tristan’s hospital room by midnight. The doctor had just informed Sabine that the bone marrow test showed Tristan did not have Leukaemia. We sighed with relief but as Tristan’s enlarged spleen and dense liver were not predicting much good, a feeling of insecurity stayed with us.
Tristan had fallen asleep after bravely undergoing all the examinations earlier that evening. I sat by his bed and quietly sobbed after my wife had left to pick up some personal things at home.
The weeks which followed were absolute mental torture; for my wife Sabine and myself, but also for our oldest son Saën (13).
Saën adores his younger brother. He is good with small children and he has expressed the idea of becoming a paediatrician for quite a while now. Of course they fight, after all they are brothers and the age difference is often a frustrating factor; but Saën is Tristan’s guardian angel when things get tough and when Tristan needs a helping hand. He really watches over Tristan and is the best big brother anyone could wish for.
The universe tends to balance things and luckily everything was moving smoothly as far as my professional duties were concerned. The team is coming together as planned and we’re even a bit ahead of the schedule on some aspects.
So even though I was still travelling all over, I found plenty of time to talk to Sabine and the kids; a whopping private telephone bill being the result but I didn’t even think twice about its necessity.
The doctors were very determined to find the cause of the symptoms; the specialists at the Children’s ward of the UZ hospital are fantastic doctors but wonderful people above all.
So, more tests followed, more blood was drawn, Tristan’s elfin body probed in all ways imaginable, a very painful (due to the extremely out-of-place masochistic personality of the nurse on duty) sweat test for Cystic Fibrosis broke Tristan’s strength for a short while but soon after he courageously underwent a liver biopsy.
The results came through and we were called in for a meeting with the hepatologist and nephrologists. The “verdict” was conveyed to us by Tristan’s softly spoken and very kind female doctor.
Tristan has been diagnosed with congenital hepatic fibrosis, with portal hypertension and polycystic kidney disease to make matters more complicated.
I know it would all sound alien to most of you, it actually did to us at first as well; but it’s crazy how quickly one gets to know the meaning of all the medical terms when a loved one is in the midst of the turmoil.
Fact is that my little gladiator is suffering from a potentially life threatening condition which requires continual monitoring; probably for the rest of his life. When the doc told us it was necessary to start treating the varices present in Tristan’s oesophagus (caused by the portal hypertension in the liver) with beta-blockers; to lower the heart rate and reduce the pressure in the veins and thus trying to lessen the risk of internal bleeding, it hit me hard.
My wonderful boy, my biggest fan and one highly ambitious dreamer; the little chap who is determined to become a “Fabian Cancellara” (his other idol) and win many bike races, the little rascal who says he wants to become a bike rider in dad’s team and be one of “my boyz” (that’s how he calls “my” riders) might be held back in his attempts to reach those sporting goals by a physical ailment which to date cannot be healed. It felt strange.
The diagnosis initiated a tough few days for the family; hours of pensive soft talking between my wife and I, of quiet tears. It made us look at our plans for the near and distant future. Things would be different now.
But, Tristan’s health problem brought us all even closer together and it helps us put things in the right perspective once again. My wife Sabine, son Saën and I decided that we are going to enjoy being with Tristan every possible moment of every day. We don’t know what the future will bring for our family; but then I realise no one has that luxury.
Simple truth is that Tristan’s wonderful (and at the moment toothless ;-) smile and angelic, cheeky enthousiasm make it soooo easy to enjoy our life together! I hope, no, I’m convinced Tristan’s story reminds everyone around us to cherish all their blessings too.
When in Rome...
Take care!
Scott
