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Jessica

Jessica was born with a rare liver disease called biliary atresia. She had a kasai procedure at 10.5 weeks that helps drain bile from the liver. This procedure only works for approximately a third of children who have it. We were lucky that it worked for Jessica.

However, in the Fall of 2004, Jessica started having life-threatening lower GI bleeds due to portal hypertension (blood backing up as it cannot flow through the cirrhosed liver, causing varices throughout her body). When she had another bleed in May 2005 the doctors suggested that it was time she got her transplant. Because her liver numbers were kind of OK she did not qualify for a cadaveric donor liver. Jessica's dad, Graham, donated part of the left lobe of his liver to her in July 2005.
He is our HERO!

In August 2007 Jessica had a very enlarged lymph node removed from her neck. The biopsy showed that she now has Hodgkins Lymphoma. She has completed 12 weeks of chemotherapy and 10 sessions of radiation therapy.

Happily, Jessica's 2yr post diagnosis scans are clear.

This page has been set up for all our family and friends who are interested in following our progress. We really appreciate your thoughts and prayers.

Please try to donate blood and talk about organ donation with your family - "recycle yourself!"

Journal

Sunday, December 27, 2009 4:32 PM CST

We are late with our Christmas news and Christmas cards again this year. “Better late than never is my motto though” otherwise I’d never do anything. Lots of good news to report, you’ll be glad to hear.

2009 was definitely a better year than the one before! We managed to get back to Yosemite in February for our regular dose of snow and skiing. Luckily we caught a huge snow storm just as we arrived which put down 4ft of snow practically overnight. The kids had great fun sledding and building snow houses all connected by tunnels under the snow. Ben’s skiing was great and Jessie took to ice skating (remarkably) giving Graham many more grey hairs.

It was wonderful to be back in England for the summer where we spent time enjoying both sets of grandparents who luckily live so close to each other in Cumbria. This was the first time seeing Joanna’s parents since they left California following Anne’s partial rehabilitation after the terrible car accident of New Year 2008. Anne is much improved but can only walk short distances, still has many odd pains, and can’t bend her knees far which is very limiting.

We were really disappointed not to see or visit hardly any of our friends during this stay due to the swine flu risk. We thankfully got to spend the best part of a week with Graham’s brother, Jane and their gorgeous kids, Emily and Joseph (although Graham unfortunately did not get to see them). Also, we saw Netta and Ian, and Juliette and Harry for just one day before she got sick and then they left for their summer holiday which was a shame.

We are all happily vaccinated against swine flu now although Joanna probably had it in October and was banished to the bedroom for days. Although she was not a good patient, this bizarrely resulted in a job offer with the organization that Joanna has been volunteering with for 5 yrs teaching music in the kids’ school, Music for Minors. After 10 yrs, she is now a working woman again, albeit part-time, as Docent Program Manager visiting schools up and down the Peninsula supporting volunteers teaching music in school.

Ben is now 10 and ready to move to middle school next year. He continues to swim year round, does lots of other outdoor pursuits with Trailblazers (his highlight of the UK trip was Go Ape). Ben is still obsessed with all things machinery and construction, his favorite store is OSH (Orchard Supply Hardware). Jessie (8) is currently enamored with horses having taken riding lessons when we were in England. She also continues to play soccer, with Graham coaching, is learning piano and has a lovely singing voice (Joanna is working on getting her into a choir). Both kids got their first hour of flying time into their pilot logs with an amazing flight from Palo Alto, over San Francisco to Half Moon Bay - blowing one of Graham's all time ambitions to fly a plane.

Jessie had good 2yr post-diagnosis scans in December and is down to just one anti-rejection medication (probably the least medication she has ever been on in her life). She visits Onc and Liver Transplant clinics every 2nd month and also has regular bloodwork but less frequently than previously. Apart from a scary episode of plummeting platelets just before Christmas, which we hope is resolved, things have definitely been moving to a much better place.

Graham still complains about his soccer every week and threatens to give it up, but he never will. His favorite hobby is cooking, which Joanna is deeply thankful for, although he is pretty fed up of it right now having cooked the entire Christmas feast. Joanna’s parents braved the traveling to stay with us for Christmas and we are currently working on lots of cosmetic improvements to the house.

It’s really great not to have any dramatic news to report this year – we hope to enjoy another ordinary outdoor California year of hiking, biking, beach and snow. Wishing you a wonderfully ordinary 2010 too.

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Links:

http://www.organdonor.gov/   Organ donation
http://http://www.liverfoundation.org/   American Liver Foundation
http://www.liverfamilies.net/   Family support forum

 
 

E-mail Author: joread@comcast.net

 
 

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