The first steps of a journey

Monday evening, we went to see David, Jasmina and Sébastien the day before their flight to Toronto. When we arrived, they told us that they had learned of Finton’s death – a little boy, younger than Sébastien who had also received a liver and bowel transplant only last December.  He had succumbed to a number of complications, including brittle bones and the thickening of his heart. The somber news only seemed to highlight how lucky Sébastien has been so far. Without even expecting it, David and Jasmina have formed almost family-like relationships with the families who live through the same experimental procedures as Sébastien.

It reminds me of a phrase from the children’s “Series of Unfortunate Events” by Lemony Snicket that was playing on TV one lazy evening:

“What might seem to be a series of unfortunate events, may, in fact be the first steps of a journey.”

And what a journey it has been so far! I didn’t think of associating that sentence with this blog until I saw a very moving story. A college team mascot, Jason Ray was the kind of guy everybody liked. He tragically died a few days after being hit by a car. What is special, is that he had already signed his donor card and gave the ultimate gift to 5 other recipients – drastically improving their quality of life. I invite you to visit the website dedicated to his memory at www.RayofHope.com If you have some time, it is really worth watching the touching video on the homepage…

How to live day to day after a transplant

Perhpas no one knows better how to live day by day after their child receives a transplant, than David and Jasmina. I was reminded of their resilience last week after a cheery call from Jasmina. Jasmina was talking from her cell phone, while taking Sébastien outside for a walk. “He always wants to get out and to move!” I could hear the wind and the busy streets of Toronto. So, how do parents adjust after their child has a transplant?

Transplant Living has some excellent pointers:

Focus on the joys and accomplishments of today
“Sébastien is doing good! He’s using his left arm more and more. It’s a big improvement if you think that a week ago, he couldn’t even move it!” Jasmina tells me. Not a person to spread bad news, Jasmina concentrates on finding the good things, or making light of challenging situations.

Join a support group or form a relationship with a family facing a similar situation
This is perhaps the blessing for David and Jasmina to be at SickKids. There is a special feeling of empathy and kindness there from families with sick children, to the cleaners that make their daily rounds.

Research and ask questions to learn all you can about your child’s condition and potential therapies
“There are 5 treatments Sébastien could receive…” (for his autoimmune disorder) and Jasmina detailed a list that later I found on the internet:

Corticosteroids – drugs to reduce the activity of the immune system.
Intravenous immunoglobulin (IVG) – the antibodies are ‘caught’ by the IVG and culled from the bloodstream.
Plasmapheresis – the blood is filtered through a special machine that removes approximately 60% of the antibodies in blood plasma.
Splenectomy – surgical removal of the spleen. (Sébastien’s spleen was already removed during the transplant)
Chemo – used to stop the production of antibodies.

Presently, Sébastien receives both plasmapheresis and chemo, the latter on the weekend. I am amazed sometimes, considering the complexity of Sébastien’s case, at how David and Jasmina implicate themselves in Sébastien’s treatments. 

Be easy on yourself when you’ve had a bad day
Call a family member, call a friend, read a magazine on another subject, or take an hour off to do something else.

Learn about your child’s special financial and educational needs
Considering Jasmina has already raised the subject of preschool, she takes Sébastien’s education to heart! Financially, it has been especially wonderful for them to be able to apply to the David Foster Foundation. David and Jasmina have never been afraid to apply to foundations… after all, isn’t that what they’re there for?

Don’t be afraid to ask for help
Considering that people are almost always willing to do anything, makes the asking a bit easier… At SickKids the parents on the ward will tell each other when they’re going shopping, and the favor is always returned.

Schedule and spend special time with your spouse and other children
David, Jasmina and Sébastien enjoy to the fullest the occasional outings with cousins, family members and friends around Toronto. Jasmina always strives to have Sébastien interract with other children, as much as his condition allows.

Being a parent is one thing, and being the parent of a child recovering from a transplant is another. Priorities change and “normal” takes on a whole new definition. It takes courage and patience, and David and Jasmina are fine examples of it.

Give life

“It might be a good idea to write about encouraging people to sign their donor card, and donate blood” a regular reader mentionned. “Yes,” I thought, “Jasmina has often mentioned it at fundraising events for Hope for Sébastien.” As it turns out, April 22 – 29 is National Organ Donor Week.

Of course, the new Manitoba licenses is the perfect occasion to sign a donor card. The province of Ontario is actually taking it a step further… In an article on April 15th, the efforts of Conservative Frank Klees to boost organ donation are outlined. He suggests a bill that: “would require everyone renewing or applying for a driver’s licence or health card in Ontario to declare their willingness to donate their organs, decline to donate them or say they haven’t made up their mind yet. If someone doesn’t complete the organ donor questionnaire, Klees said the application would be rejected as incomplete.” As Mr. Klees states, “transplant technology has advanced in leaps and bounds in recent years but organ donations haven’t kept up”. New Democrat Peter Kormos has another view: “neither the Liberal government nor the Conservatives are courageous enough to take the necessary steps to help the 1,748 patients currently waiting for organs in Ontario”. Mr. Kormos currently “has a bill before the legislature that would make everyone an automatic organ donor unless they opt out” and argues that Mr. Klees bill will not increase organ donation, “because it gives people an easy way out”.

I’d never heard of the “automatic organ donor” idea until Jasmina and I were talking one day and she said that that is how it is in Austria. TransWeb, a site “all about transplantation and donation” gives an educational overview of the whole process as it is in North America.

As for blood donations… Monty Python has fun with the idea:

UPDATE: The Globe and Mail has an article that further discusses the issue, entitled: Organ-donor rules wait till after Ontario election

The short bowel syndrome heroes

Not long ago, the Toronto Star published a special section in their newspaper, concerning SickKids. One article in particular pertained to Sébastien, explaining Dr. Paul Wales’ initiative to save more children who are born with Sébastien’s condition. Dr. Wales took an interest in short bowel syndrome after seeing the case of a baby girl seven years ago. “Doctors are faced with a no-win dilemma: let the baby die that night or perform the transplant, which would give her six to 12 months of life before a ‘miserable death’”. After earning his master’s degree in Scotland, he returned to SickKids in 2002 and organized GIFT – the Group for the Improvement of Intestinal Function and Treatment. As Hospital News describes, it began as multidisciplinary “research group looking to develop best practice standards for the treatment of intestinal failure”. It is interesting to note that in 2001, there were about 20 new cases of Short Bowel Syndrome in a year at SickKids NICU. Jasmina has already mentionned Dr. Wales with admiration, understandable when you read what motivates him: “I always think to myself, ‘What would I do if this was my kid?’”.

So what does GIFT do?

• GIFT has a standardized approach
• GIFT puts babies on transplant lists sooner, “raising their chances of making it to surgery”
• GIFT assures continuity of care by meeting weekly to discuss patient cases and treatment plans
• GIFT thinks of ways to improve bowel function so that prolonged TPN isn’t necessary, in order to avoid a transplant

GIFT has become the largest program of its kind in Canada and caters to over 80 patients. The program obviously helps: “when 54 newborns with short bowel syndrome treated under GIFT over a three-year period were compared with 40 pre-GIFT newborns, the success of the program was clear: while the overall mortality rate stayed the same, the mortality rate for the babies with liver failure dropped to 46 per cent from the pre-GIFT era’s 90 per cent.”

What kind of new therapies are the team trying? For a detailed look, check back to find out!