Blogging a transplant journey to inform and inspire
David came back from Toronto Sunday evening. After a late supper and a quick trip to Lick’s (our favorite ice cream place, tempting us from only a few blocks away) David showed us Sébastien’s most recent pictures and videos. So, during these past few months, when it has been relatively quiet on Place de choix, Sébastien has been doing well. In a way, these times, when there hasn’t been much to say, have been good for David and Jasmina, before all the upheaval of another transplant…
Sébastien is going into the O.R. today to receive the camera-pill. He’ll be the youngest patient to receive it, and should it get stuck, the doctors will operate him to remove it, re-connecting his bowel at the same time. The doctors hope to find the source of Sébastien’s occasional bleeds, since the endoscopy and the colonoscopy showed nothing unusual. Talking with Jasmina last night, Sébastien seems to be doing fine. “He’s getting so much longer! Last month he was 83 [cm long] and he’s grown since then. His new thing now is to hold up his two fingers: Peace! And he wears his sunglasses too.” Jasmina worked with the hospital to allow Sébastien to attend a Barney event on May 3rd at Ontario Place. Sébastien, she says, was so impressed. He stood and danced in his own way, excited to be out to see one of his favorite tv characters live.
David was back in Toronto for Mother’s Day, his week-long visit providing Jasmina with a bit of time to catch up on sleep. Jasmina was happy to tell me that on Mother’s Day, the three of them participated in Megan’s Walk, creating – with nearly 1000 other people – a huge hug around the SickKids hospital. “Even David was really touched.” Jasmina told me. “It was the first time he participated. Kids in the hospital showed posters thanking the participants outside, and kids outside were given chalk to draw messages on the sidewalk for the kids inside.”
Wishing you all a lovely week! And good luck, little Monkey, for today’s procedure!
Sébastien bled 105 cc of blood in the beginning of the week, leaving Jasmina and the doctors wondering if a clot might have dislodged, somewhere inside. He received a transfusion of 340 cc as a necessary precaution. In a rough idea of amounts, 1 cc is about 20 to 25 drops from an eye-dropper, 10 cc are about 2 teaspoons, and 300 cc equal 10 oz. The term cc, is an acronym for cubic centimeter, the unit of measurement being used in the automotive industry as well as the medical. In many areas of the world, it has been replaced by the millilitre, though its usage persists in the U.S. and Canada.
Sébastien was irritable when Jasmina called and was very jealous of her attention… his long “mamaaaa” calls making us both laugh in the middle of the conversation. He’d been for a radioactive tracer test that day, and was radioactive as a result. Jasmina had to don gloves and a mask to interact with Sébastien for the next 72 hours. It was a test meant to find the source of the bleeding. The upper and lower scopes didn’t reveal anything and couldn’t reach far enough to cover all the area… Unfortunately, the test was a mistake, and Jasmina and Sébastien will have to wait for another bleed to undergo the right tracer test. The medical team is trying to find the right amount of medication to suppress the stomach acid, and during his dialysis, Sébastien was given some vitamin K to help the blood clot.
As you’ll see in this video, Sébastien is as active as ever…
Jasmina and I have started a tradition… a regular weekly call that is the highlight of my evening, a simple pleasure and a regular rendez-vous. It always includes a debrief of Sébastien’s past week. Christmas is in the air… I rush about hoping to find the perfect Christmas cards (or make them!) amid bathroom renovations we spontaneously decided to begin, but a phone call to Jasmina and I find her keeping track of Sébastien’s various tests, and happy in the little appartment that has become a cozy second home.
“Sébastien did well in his audiology test.”
“Audiology?”
“Yes, it’s a hearing test. He has an E.C.G. test on the 17th and he had his hematology test as well.”
So many terms are second nature now… “Sébastien went to the dentist!” Jasmina tells me. “He needs eight caps! Guess how much that would cost…” she asks me. Since Jasmina recently went to the doctor, also needing a few caps, I try to multiply an imaginary number and don’t even come close, venturing:
“Eight hundred?”
“Two thousand!”
“Oh my gosh!”
“He needs them because he grinds his teeth.” It’s Sébastien’s reaction to stress. Apparently the medical team following Sébastien’s case would have to decide whether his teeth take precedence over his kidneys or vice versa, as capping his teeth would mean an operation and general anaesthesia.
“Does he still have his infection?” I ask… It had started during their visit in October and had manifested itself in red circles on his skin. The infection is perhaps the only thing that is delaying Sébastien from getting onto the kidney transplant list. “They stopped the antibiotics. But Sébastien started having spots again and he wasn’t feeling too well for a few days.” Jasmina explains.
But, little inconveniences haven’t stopped Sébastien and Jasmina from getting out and advocating organ donation. Last Wednesday evening, Jasmina and Sébastien were special guests at a talk Linda Rumble was giving at the Ryerson University. “This Friday, we’re recruiting nurses!” Jasmina tells me. She’s already told me that her wish is to give talks to encourage organ donation… It’s just as equally moving for the audience to see Sébastien, alive after a liver and bowel transplant, as it is for Jasmina to show that with perseverance and determination, it is possible to extend a child’s life that – in another time, or in another country, would have been in peril of being too short.
On another note… Sébastien’s birthday is coming up quickly… We could all pitch in to pay him a set of caps… or, joking aside, we could adopt a creative project if you have some suggestions in mind to send me: jpalud at gmail dot com – I’m open to anything! Last year, we sent him an album of wishes with pictures from nearly everyone who knew him in Winnipeg. This year, he’s turning three and I hear that his Mama has a jungle themed birthday planned for her Monkey!
UPDATE: Sébastien is scheduled to go to the O.R. on Friday at noon to receive his eight caps. Have a thought for him!
Sunday was actually a dreadful day here in Winnipeg, weatherwise. I was under house arrest, due to a passing cold front that has blown snow everywhere. Our car is absolutely dreadful in this weather. I had plans… I was supposed to go to a baby shower in Sainte-Agathe. Being a bit last minute, I went to Chapters just as the snow started. I picked up a few gifts and a Chai Tea Latte at the Starbucks and headed home. It only took until the third light to finally get onto Saint-Mary’s from Meadowood, and I turned slowly. But as our car is infinitely more stubborn than its french-irish driver, it decided not to complete the turn, and instead head straight for the curb, making a soft “clunk” sound. Of course, traffic had to stop, allowing me to slowly back out of my predicament, hastily roll down the window, and wave thankfully for their understanding, before proceeding at a snail’s pace, to make it home only slightly upset. Since my lovely husband with many more years of experience on winter roads was up to his head in report cards, I was forced to forgo a trip to Sainte-Agathe for the shower.
But, that is not the reason I’m writing… forgive my rambling… I just thought you’d appreciate not being here right now. You must admit, there are some perks to being in Toronto without a car!
I thought I’d tell you how well the “What a Girl Wants Gala” went. David will be bringing you the swag bag they distributed. I hope it doesn’t get too crushed! The Gala was held at the Fairmont Hotel, in a large room at the top of the escalator. Stephanie and I arrived early to make sure the presentation worked well. The traffic was something else, as the evening coincided with the Santa Clause parade and all traffic was diverged from Portage and Main to the side streets. The evening began with cocktails at six o’clock. At seven, Susan Tymofichuk – Winnipeg’s CTV News anchor, welcomed the guests… mostly all ladies, elegantly dressed, appreciators of wine and designer handbags. Kerri-Irvin Ross, Minister of Healthy Living also addressed a warm welcome to everyone present. She was seated at the same table as Stephanie and I and asked about Sébastien, later commenting that after hearing a story like his, our complaints seem so small.
The dinner was a delicious three course meal… including a salad with maple raspberry vinaigrette, a main course of chicken breast with a wild mushroom and red wine cheddar stuffing, caramelized onion mashed potato and seasonal vegetables (slivers of orange, yellow and light green, a piece of red pepper on top and two green beans on the side), the whole with a dark brown sauce of pan juices. The desert (my favorite part!) was described as a lemon and blueberry teardrop with a chocolate tuile purse, fresh seasonal berries, two sauces and crisp sugar chards. Really, what it was, was a piece of cake, shaped like a teardrop, with elegant chocolate polka dots along the side. Stephanie and I puzzled over how they possibly could have made such perfect polka dots… The second layer was a kind of lemon flavored mousse, or custard, topped with a glaze and a dollop of whipped cream, a few blueberries and a slice of strawberry. And the “tuile purse” was like a thin cookie, shaped like purse, the bottom part, of chocolate.
After diner, there was a raffle. Stephanie and I purchased many tickets, hoping one would be a winner… but unfortunately, neither of us won. We did however win the lamp that was the table centerpiece – a unique and charming idea. You’ll probably see it when you go home, I think David put it in your bedroom.
When it was time for telling Sébastien’s story, everyone listened, no doubt captured by his beautiful face on the screen… the one with him in his carrying seat in the summer of 2005. As I explained how his liver had been affected by the TPN, you could have heard a pin drop. As Stephanie and I were leaving two ladies stopped us and admitted being touched by his story.
So many people thought of you… I know that in return, you are simply happy that Sébastien’s story is what it is today. Today, he is happy and smiling, delighted to be at “home” in your little appartment with its hardwood floors, and occasional cockroaches!
Miss you!
Take care,
Jacinta
For those of you who may not know, Jasmina is a very creative and crafty person. While I’d visited in Toronto, she’d started smocking little gowns for infants resembling something like this, for sale at the Sick Kids Hospital gift shop. The reason I mention this, before leaving you with a note from Jasmina, is that I’ve added a badge to the blog encouraging people to buy handmade this holiday season. Here are five good reasons taken from the website that has over 4 400 supporters:
Here are some ideas:
And, to end the week, a thank-you note from Jasmina.
Hello friends,
It has been such a wonderful time being able to go to Winnipeg and be home with our beloved David and all of you… It was a very emotional time to embrace all the bad memories we had at our house of Sebastien being soooo sick and this visit gave us the opportunity to embrace those bad memories and transform them and create new wonderful memories… and there is no place like home… being able to eat a home cooked meal or even just being able to sleep in our own bed… ahhhhhhhhhhhhhhhh it was soooo nice, seeing all of you and just feeling like a normal family to welcome home David after his long day at work just meant a loooooooooooooot… it meant soooooooooooooo much to Sebastien and me… thank you from the bottom of our heart… it was very difficult to leave our home but we are challenging and embracing Sebastien’s journey for a kidney transplant and all the work up for it… sooo we had to move into a one bed room apartment close to the hospital as Sebastien goes every day for his treatments there… I would like to really thank all of you for having made our home visit such a wonderful time and it really really gave us more strength to continue to support our sweet son Sebastien on his journey towards his future kidney transplant…
Well, thank you all for having welcomed us home and a big thank you to you David that really tried sooo hard to get us home for this home visit and organized with the Toronto Team and Winnipeg Team everything and the wonderful Suprise Party… it was amazing…
Sebastien goes Monday, Wednesday, Friday, & Saturday to Dialysis in the morning hours. The other days he goes to Physio or OT (Occupational Therapy) and usually Sunday is our day off… Soooo usually after Sebastien is gone to bed at 9:00 p.m. things are more quiet.He also is getting a antibiotic treatment every 8 hours – at 11:00 a.m., 7:00 p.m., and 3:00 a.m., which is via IV and takes me about 1 hour from start to finish……
Other than that Sebastien is just blooming in his developement and he is even eating again some ice cream and sweet potatoes… thanks to David’s exellent effort… and he is nearly getting himself into sitting position from lying down all by himself… yeahhh thanks to David’s hard work on Physio with him….
Thanks also to eveyone helping us with the move to the apartment and to everyone donating items for this too… xooxooxooxoooxoxoxooxooxx
Take care and God bless
With Love xoxooxoxooxoxxooxxoxo
little monkey Sebastien xoxoxo & David & Jasmina xooxox
Jasmina, David and Sébastien have officially moved to a new apartment, not far from the Ronald McDonald House. Their apartment on the seventh floor has clean laminate floors as Jasmina was delighted to tell me, appreciating the cleanliness… although a neighbor, passing them in the hallway asked “Have you got cockroaches?” “If we get cockroaches, I’m leaving!” Jasmina laughed. I think we both have the same kind of fear of bugs… It’s one thing that makes me scream like a little girl.
David had courageously decided to do the first few trips by walking before deciding to rent a car. Sébastien has a surprising amount of toys, the majority are gifts, including one life-size teddy bear that could almost serve as a babysitter. Their apartment is furnished with second-hand furniture, collected and passed on to David and Jasmina for the duration of their stay, through the generosity of a transplant advocate named Linda Rumble.
If you want to send them a Christmas card, or a birthday card for Sébastien (December 12th!) their new address is:
40 Gerrard Street East, Apt. 702
Toronto, ON M5B 2E8
Upon arrival in Toronto, Sébastien was admitted for treatment of his blood infection. Jasmina quickly learned how to administer the medication and now doesn’t hesitate to wake up at 3 o’clock in the morning to administer it to the sleepy boy, who was dressed as Tigger for Halloween, by the way. He is now discharged and enjoys driving his bicycle around the apartment.
Little Finton who passed away while David, Jasmina and Sébastien were in Winnipeg, had his funeral October 31st. The father, later meeting Jasmina hugged her saying: “Hold your son close because you never know how long you have them.”
UPDATE: Jasmina would especially like to thank Gina from the Liver Foundation and all the people that donated furniture or helped David and Jasmina move to their new apartment. Many, many thanks!
Sébastien was under the weather Thursday. Jasmina and I came back to David, Sébastien and my husband after a girl’s night out. We found Sébastien sitting on the floor of the living room watching his favorite Teletubies movie. He didn’t want to be bothered and his usual ready smile was gone. His sleeping habits had become irregular since his arrival to Winnipeg and finally on the weekend, there was an answer: Sébastien tested positive for a blood infection. As luck would have it, he contracted it here in Winnipeg. He’s been given antibiotics, but still isn’t quite himself.
The return to Toronto is scheduled for tomorrow… David and Jasmina are moving to an appartment on November 1st, one of the reasons being that they’ll be able to qualify for health coverage in Ontario, or OHIP. The appartment isn’t far from the hospital. We’re happy for them and hope that the return goes well!
Jasmina forwarded a link with the request that I put it on the blog… The liver foundation is auctioning off various items on e-bay in the hopes of raising awareness and collecting funds for pediatric liver disease research. Check it out!
We try not to think of Sébastien’s upcoming return to Toronto… every visit with him flies by. He makes us laugh with his gestures and his smile lights up the room wherever we go. Strangers can’t help but smile back. He is such a tender boy… he’ll lay his head on you when you hold him, he’ll blow kisses when it’s time to say goodbye, he’ll tell you how much he loves his parents by spreading his arms far apart… We try not to think how much we’ll miss him.
Last week he had a skin biopsy for a strange rash that has appeared in big and small red circles, like rings. While awaiting the results, David and Jasmina aren’t too concerned, and life continues for them with its visits and home-made meals. The return to Toronto is planned for October 30th… apparently trick-or-treating there is better.
Jasmina and Sébastien are home for a few week visit! We took the liberty of decorating the house… And giving credit where credit is due, Martha Stewart was the inspiration.
And this was the makeover team…
Sébastien’s high liver levels were investigated, but nothing was found to be the cause of it… So, he and Jasmina are happy to be making their way home today!
Place de choix is what you get when you mix a very special godchild with an extraordinary medical history. Sébastien started life with gastroschisis in December of 2004. With the constant care of his parents, David and Jasmina, Sébastien lived to have a liver and bowel transplant in August of 2006. He is now waiting for a kidney transplant in Toronto before coming back home to Winnipeg. This blog is currently updated by Jasmina when time allows her to.
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