Hello all. I wanted to write for a few reasons: to give you an update on my dear, sweet son Noah (eight years old), to thank those of you who replied to my emails about Noah and showed your concern, and offered prayers (thank you ... that support did help me through a very low point), to share a great story with you, and to ask for a favour.

I did get Noah’s 24-hour urine results and they were not good ... double the normal adult value for noradrenaline and metanephrines. I have been in contact with NIH (the U.S. National Institues of Health). Noah had pheo surgery there in November 2004 and then again in May 2006 -- the latter to remove two pheos. They asked me to keep track of his blood pressure for a few weeks, two or three times per day, and fax them the results. The numbers seem to be on an uneven upward climb.

Of course something is going on. Either an additional tumour was not identified in May (despite a harrowing number of scans) or one of the tumours they thought they removed managed to leave some part of itself behind. Or a new tumour sprouted within days of that last surgery. Anyway, my son has a pheo. This is some kind of torture for our family. I can’t even think of a word to describe how I feel.

Anyway, I heard a great story last week and I want to share it (bear with me on length here).

A Canadian children’s book author, Richard Scrimger, was writing a novel about a blind boy and he wanted to know what politically correct term to use, so he asked a boy named Ben (blind from birth) what to call it ... physically challenged? differently abled? Ben said no, he prefers to call himself ‘handicapped.’

Richard was shocked ... he thought that was a derogatory term. So Ben asked Richard if he knew anything about horse-racing. Not really. So Ben explained how horses who have won previous races are made to carry more weight, so they don’t have as much of an advantage over the slower horses. This is called handicapping.

Then Ben asked Richard which horses are handicapped, the fast or the slow? The fast ones, of course. And Ben said, how could that be derogatory? I am a fast horse, so I have to carry a little more weight.

I love that story. Richard wrote the book (Charlie’s Point of View) and it is dedicated to “fast horses who are carrying more weight.”

That makes me feel good, and strong, and reminds me that I can get through this.

Now the favour: please keep Noah in your thoughts and prayers. This is a lot of weight to carry and it might help if some of you other fast horses share a small bit of the load.

Michael, Geoff, Renée and Noah.

December 2006, update:

Noah did have surgery again in November to remove his fourth pheo!!! It was done at the U.S. NIH, and they removed his entire right adrenal gland along with small pieces of both his liver and right kidney. They were concerned about cancer because of how aggressive the tumour was ... it grew very quickly. It was a bit of a tough recovery for a while there, but at last Noah is doing well. He developed a pulmonary embolism after surgery and he was on blood thinners for over a month, with the last injection on Christmas eve. The pathology came back clean! Hooray!

Noah has been through so much that a friend encouraged me to apply ... and the Canadian Children’s Wish Foundation is granting his wish to visit Disney World with his family in February. Hopefully 2007 will be a much better year for us all!

As printed in the VHL Family Forum 15:1, January 2007. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.

mystory