Celebrating Nicky

Please come celebrate Nicolas' life with us at Blessed Sacrament, 194 Fourth Ave in Ottawa.
Wednesday, February 4, 2009 at 11 am. Reception to follow at the church.
Please dress colourfully, pink if possible (Nick's favorite colour)

In lieu of gifts or flowers please donate to any of the following charities that were close to Nicky's heart:
B.A.R.K.: http://home.ican.net/~933435/
Guatemala Stove Project: http://www.guatemalastoveproject.org/
Kids with Cameras: http://www.kids-with-cameras.org/home/
Candlelighters: http://www.candlelighters.org/

Loving Nicolas Spano

Nicolas, son of Sebastian Spano and Kathrin von Dehn lived his little life, all 12 years with gusto, bravery and a full ability to express his eccentric sides. Nicolas never took no for an answer, he asked the Big questions, he made us confront our complacency. He was an old soul. He was the proud big brother of Isabella, the one who watched out for his little brother Sasha and the one who gave his big sister Sophie a run for oldest status.
Nicolas had been diagnosed with stage 4 liver cancer in February 2008. His heroic stamina to endure 12 rounds of chemo and a hopefully life saving double transplant in New York ended on Thursday, January 29th at 1:50 pm.

Sophie flew down to New York this morning

Sophie headed down to New York this morning. Nicky is in the intensive care unit. I don't have many medical details but do know that the infection in his lungs is serious. Thanks for all the thoughts and support.

mari

Update from New York

Unfortunately things have gotten more complicated for Nicky. Despite the great progress of the transplants, Nicky has developed an infection in his lungs. He is getting the best possible care and has both Kathrin and Sebastian there to support him. I'll pass on more information as I receive it.

Out of ICU

Nic is out of ICU, he's doing ok, just very tired, it will take time for the liver to improve, AFP is 7.5!!!

Nic in ICU

Updates from Facebook (add Kathrin Von Dehn as a friend to get them directly):

Nic's liver shows sign of venal occlusive disease, the small arteries of the liver have clotted, impairing his overall ability to excrete. He's going to go on dialysis until this is resolved. This is going to be just one of the bumps along the way. His blood work is good, the white cells are coming in, and that's great!

Nic picked up a bit by the time we made it to ICU. The docs felt he didn't need to go on the dialysis as he was responding to the diuretics. He's stable today, on oxygen but no pain. He's very sleepy and so thirsty, but he's going to be on a restricted fluid diet for at least 3-4 days, until he loses about 5 kg of fluid. His symptoms do line up with venal occlusive disease. The doctors think that it's clearing up, the liver numbers have dropped. It's just wait and see.

Love to you all, thanks for your support and prayers. Kathrin

Hurray & Thanks!!!!

Great news from New York - the stem cell has grafted 100%, and Nic's last Pet scan showed no sign of tumour. Thank God for this miracle.

We received great news about Nicolas' host/donor situation. He is "all donor", which means his bone marrow, which makes the blood, is 100% Sebastian's marrow. What this means is that there is no way that Nicolas will get GVHD (Graft vs, Host Disease). The bone marrow part of the operation has been a perfect success.

Obviously there are many steps more towards recovery and Nicolas is required to stay the course to get healthy. His recovery will take many months, and he is not out of the woods yet, so keep your positive thoughts coming (they've worked so far).

Thanks to everyone for all of the support - both emotional and financial. It means the world to us.

Thank you & Hurray!

A new year in New York

Happy New Year everyone!

For those not on Facebook - here is a photo from New Years Eve in New York City:


Test results continue to be good - AFP is down 13.5 which is wonderful!

Cheers.
Mari.