Odds and ends

Nathalie e-mailed me the outcome of the fundraiser she helped organize in Toronto:

The fundraiser was a success!  The first part of the fundaiser was a train-o-thon.  Heritage Martial Arts of Cambridge, Ontario, organised the event.  For 12 hours, some of their members trained for Sebastien’s cause, getting pledges from family and friends to support them in their training.  This event raised $7,730 alone. 

The second part of the fundraiser was a call to all family and friends of Sebastien and his parents.  Sebastien’s story touched a lot of people and we had an amazing response.  $5,970 was raised this way!

We would like to thank everyone who passed on the word, sent a donation and prayed for this incredible little guy.  $13,700 was raised through this and we want to thank you all for your generosity.  The tax receipts will be mailed shortly.

Sincerely,

Mike, Nathalie and Jacob

A special thanks to those who have been donating via PayPal! Sébastien has his own bank account, and the money is directly deposited there. I wish we could express the gratitude we feel… 

On another note, a journalist for the Globe and Mail has a blog aptly called The Mother Lode and in it describes the many ups and downs faced when one has a newborn at Toronto Sick Kids. A small quote seemed particularly fitting and I wonder if perhaps she hasn’t met Jasmina and David…

It’s amazing that so many parents here at Sick Kids do embrace hope each time they see a bit of light. Even though they know that they’ve crashed to earth so many times before. Maybe it’s guarded hope, but if there is any chance that things will improve, most of us get euphoric ­ even if it means plummeting, literally hours later.

Holding fast to a dream

Last evening, my mother-in-law called. She’d spoken with Sébastien’s grandma who is in Toronto still. “When we arrived, we thought for sure Sébastien wouldn’t make it through the night. We’d never seen him so sick.” But, the medical team worked their magic, bringing him new medications and attentive care. My mother-in-law asked if the blood clots were still present, and Sébastien’s grandma wasn’t sure. “He’ll probably be going for a scan Tuesday, and have the results later.”

Sébastien opens his eyes, half sedated as he is, recognising his parents and his grandpa especially. Wondering if Sébastien might not be mentally affected by the hemorrhaging in his brain, a neurologist had responded that though it might be slight, it would not be irreversible.

Sébastien will probably be in the ICU for some time, losing his room on the 6th floor. Only two people are allowed to be with him at one time, so Sébastien’s parents and grandparents take turns. When the medical staff has a shift change, everyone is expected to leave until the new team is in place and aware of the different cases, leaving David, Jasmina and the grandparents a few hours out.

The visits to Sébastien’s blog spiked during the last week, at the news that his situation was precarious. In one day, we had nearly 500 visits, compared to the regular 50-130. We thank you for your interest in Sébastien’s case and your concern. Your thoughts and prayers mean alot to David and Jasmina!

We tell so many people that Sébastien’s case is special… There is always something new, or unexpected – sometimes happy and other times sad. His transplant, the care and therapy he receives in Toronto is new territory, even for the medical team there. It’s hard to say what is normal and what isn’t, what is to be expected or not. And I’m sure that is why Jasmina and David live only one day at a time. And when that is too much, one hour at a time, building on a dream they have for their son…

Hold fast to dreams,
For if dreams die,
Life is a broken-winged bird
That cannot fly.

Hold fast to dreams.
For if dreams go,
Life is a barren field
Covered with snow

- Langston Hughes

Somewhere over the rainbow…

Unfortunately, I have little news of Sébastien… neither much better, nor much worse. Thursday he received a medication that thickened his blood, and increased the level of platelets. Friday, his platelet level decreased a little… His parents and family are anxious for him to open his eyes. Thursday he had tears apparently, which pleased the doctor who said: “It’s a good sign! He has emotions!”

UPDATE: Saturday morning, David leaves us a cheery message: Sébastien is doing well, he’s quite stable. He opens his eyes pretty wide! 

I received a link to a YouTube video, and watching it at work almost made me cry… The little girl that sings is 6 years old, and has an angelic voice, full of innocence and beauty. It made me think of Sébastien. The lyrics are here.

The sound of suspense is a million silent questions

It’s lunch hour in the office and someone tells me I have a message on my answering machine. “What is it?” I ask, expecting a work-related request. “It’s family… I dunno, I didn’t really listen.” Thinking perhaps they heard wrong, I go and dial my messages. I recognise my father-in-law’s voice with some surprise. “Allô, c’est Léon.” He tells me that he is bringing Sébastien’s grandparents to the airport… they’re leaving for Toronto. Sébastien has more blood clots forming in his head. That’s it… that’s all I know. I phone him back, but little is added. Sébastien’s grandparents fear the worst.

A special thanks to all of you who are following the blog, for your words of encouragement, your thoughts and prayers! When Jasmina or David do have time to read your comments, it is a real comfort for them.

So little to say, while you wait

Yesterday was David’s birthday. We called to wish him well and enquired about Sébastien. “He’s stable…” another way of saying, not much better, and not worse. The blood clots haven’t dissolved and Sébastien is medicated. “We’re waiting for him to wake up,” David tells us…

Say a prayer for me – Sebastien

Mom and dad are very worried for me… I’m in critical care. The doctors found out that I have blood clots in my head and operated me early Friday morning. They decided to place a draining tube in my head to take away any excess fluid and hope that my blood clots will dissolve.

So, if you don’t mind, and have a minute today, please say a prayer for me and for my parents…

Love,
Sebastien

“No fair!” said the taxi driver

The morning I was to leave Toronto for a flight to Quebec, I called a taxi. The driver was an older man with a thick accent. Perhaps he was from some distant European country. The streets of Toronto were busy as usual, the sounds of traffic echoing between the tall buildings. The driver asked where I was going.
“Quebec” I answered.
“Good for you!” he said. “I was just visiting my godson,” I continued, answering a question he hadn’t asked, “he’s at Sick Kids after a liver and bowel transplant.”
He asked me “How old?”
“Two and half”
“No fair!” he exclaimed, his voice thick and indignant.

For some reason it made me smile. Somehow, time has numbed indignance, like a song you get used to hearing on the radio. 

As for Sébastien, he’d had a fever at the beginning of the week, and the doctors later discovered that Sébastien’s two-year molars are coming through. It’s been a series of sleepless nights and little comfort for Sébastien and Jasmina. Over the phone I hear his cries, that begin like the squeaks of a baby bird. A minute or two of calm, and then it begins again. Jasmina tells me it’s been 5 or 6 days since it started, as he has three molars coming through. “Some babies, you don’t even notice when their molars come through… For others it’s painful. For Sébastien, it’s always been hard, his teeth.” The medical team has suspended his chemo treatments for the duration of his molar growth. “So, I rock him and walk him all the time,” Jasmina tells me. “It’s good in a way: it’s bonding time with him!” I listen in wonderment. How does she do it?

Fundraiser update

A friend and I met on Sunday and I asked her how the fundraiser went:
“It went really well. Dominique and Jacqueline (David’s brother and sister) were there and alot was donated.”
“Really!”
“Yes! Labatt’s donated the beer, someone else donated the potatoes and someone else the steak. And it was really good… The steak was done to perfection, the marinade was perfect and the potatoe was the size of my purse!”
I laughed, almost hungry at the thought of it.
“And there was coleslaw.”
“Were there alot of people?”
“Yes! It was pretty full” and she described how it was hard to move about.
“Were there lots of prizes?”
“Twenty – and good prizes too… all kinds”

Later, Roxanne filled me in on the specifics by e-mail:

It was great!!  I was told that they raised over $7000.  I don’t know the exact number but the generosity was enormous from donors who donated prizes and friends and family who bought many tickets for the silent auction, 50/50 and there was even one auction that was to go on for another week after the event.  The food was very delicious and the atmosphere was very happy and looking forward for Dave, Jasmina and Sébastien to come home.

Bravo to the Class of ‘93 for having done such a wonderful job! God bless your generosity!

Links to Sébastien’s blog

We’ve noticed the links! Thanks for including Sébastien in the Short Gut Blogs!

Nora Thomas

Eleanor Brogan

Another day, another challenge

The day spent with Sébastien went by quickly, in a flurry of constant activity. I wanted to soak everything in, before leaving in the morning the next day… The tour of the hospital, the devoted volunteers that would come by to play with Sébastien, the way he’d be, all engrossed in an activity, and suddenly point from his bed toward me, like he wanted to include everyone. The sanitizing stand at the entrance of the hospital, and the music of some event or other that wafted through the atrium, like the smell of freshly baked cinnamon buns. We’d had a late lunch that day, after David had arrived, walking to a bistro not far from the hospital. Sitting outside with our sandwiches, some yellow CAUTION tape, tied to a pillar, was gently twisting in a draught and caught Sébastien’s eye and made him grin, looking at us, and then at the tape. In the evening we ordered in – a good thai meal at a more than reasonable price.

It seemed to get dark all of a sudden… perhaps I’d lost track of the time. The hospital became quiet, the lights dimmed, the atrium more of a yellow glow, with certain sections cordoned off.

The next day, I woke and made my way back to the hospital, to say goodbye. I stopped first at Starbucks to buy a coffee for Jasmina,  a “misto” in Starbucks lingo. I found Sébastien sleeping on her lap, a fuzzy blanket draped over him. He hadn’t slept well that night. Jasmina and David were up late. His blood irregularities had made him uncomfortable. It seemed as though the day before, had been one of his good days. Today dawned with another set of challenges… His mucous fistula had started bleeding the evening before and he had needed a platelet transfusion.

With Sébastien’s platelet issue, everything is a fine balance. The medical team decided to give him chemotherapy in order to reduce his antibodies, and hopefully stop them from destroying his platelets.  He’d had a small dose before I came without any adverse effects. His chemo is to continue once a week for about 4 weeks.

A nurse came in, her tight blond curls and cheery smile seemed to bring a ray of sunshine into the room. My mind spun as she discussed electrolytes, platelet quantities, and other such terms… She mentioned his weight, “He’s gained a kilo in a month, which is a lot! We could continue to feed him, and he’d become a butterball, but I think we want to concentrate on his length…” Jasmina agreed and the conversation continued on as I glanced at the time. The nurse left after having gone over everything, and gently checking his heart beat, as she’d done the day before. Jasmina and I said goodbye in a long hug, with the unspoken uncertainty of when we’d see each other again.

Sunday was her birthday! If you liked this post, you can buy her a coffee! (The idea comes from Chris Garrett)