Just a note…

Sébastien is home and well… This morning I leave for Toronto at 9:00 and come back in 6 days. I don’t think I’ll have much opportunity to write, but when I come back, I’ll have pictures and anecdotes aplenty. To everyone a good week!

Jacinta

Knock on wood, things are looking up!

Things are usually going well when Sébastien’s allowed to go home on night passes… This week Sébastien will have a stool test done to see if he still has traces of VRE. It’s an infection that will eventually go away on its own, but to help it along, it is best Sébastien stays out of contact with possible contamination, and that the usual precautions are taken. Friday, Jasmina was pleased to say, Sébastien was back onto an “old” med schedule to regulate his stomach pH levels. Rather than giving him medication at 3:00 in the morning, the medical team decided that Sébastien could have it at 9:00 instead… It only seemed to worsen the recurrences of bleeding and Jasmina repeatedly asked the team to allow her to give the medication at 3 a.m. dismissing the inconvenience it would be to her. The team finally agreed, so Sébastien’s boluses treatments are at 3 a.m., 3 p.m. and 9 p.m. If everything goes well, cross your fingers, Sébastien should be home by the end of the week. Sébastien also has had a growing appetite this last week and doesn’t seem to be a picky eater, liking everything and chewing on this and that.

As you might know from the previous posts’ comment, Jasmina, David and Sébastien are looking forward to a special visit from Gerhard, Jasmina’s brother, and his girlfriend Steffi. They are arriving on March 29th and will stay until April 10th. The 29th is coming up fast! Bon voyage to the pair! And if there are any words of advice that you would give for the international guests, feel free to leave them in the comments!

Celebrating every day

Over the weekend I received a link entitled 99 Balloons. My sister-in-law has a knack for sending good ones… Not the kind that warn that an Olympic torch will burn our hard drive, or the kind that ask us to forward the message to more than 10 people so that something great will happen tomorrow morning. I watched it, and felt tears well up. Go ahead, have a look here.

Happy Saint-Patrick’s to all the Irish readers!

Bit by the VRE bug

“Sunday was rough” Jasmina said. We hadn’t been able to have our usual call on Monday as Jasmina had a headache, no doubt due in part to the weekend’s events with Sébastien.

It all started Thursday, as Jasmina and Sébastien came back to SickKids after doing some laundry at home. Things were looking up and Friday was going to be discharge day. As Jasmina and Sébastien arrived on the ward, a nurse greeted them with “You’re part of the clan!” and Jasmina didn’t understand the joke. Until they arrived at their room and on the door was posted a VRE caution sign. Sébastien had VRE. “I was so mad!” Jasmina said. She asked to see the infectious diseases team and have everything explained clearly, including HOW Sébastien got VRE to begin with. It isn’t an easy question to answer… VRE stands for Vancomycin resistant enterococcus. It’s a bacteria found in our intestines that normally cause much trouble. But it’s resistant to antibiotics. And when it decides to visit an immunosuppressed patient, it’s dangerous. Jasmina and David find it hard to see that many of the staf on the ward have to be reminded of the precautions to take when they come in contact with Sébastien. What is involved? Everyone who comes in has to “gown up” and stethoscopes should be disinfected…. The VRE bacteria can live up to 14 days on a surface. It’s easily transmited during routine procedures between patients and Sébastien is now in isolation. It’s hard to know for how long… Jasmina couldn’t say.

Sunday, Sébastien was bloated and the nephrology team were reluctant to take him for dialysis.  AND, Sébastien had started bleeding again. The bleeding doesn’t have anything to do with the VRE infection, but rather with the delicate pH balance in his stomac.  Watching stomac pH numbers has become David and Jasmina’s new hobby. “If he’s three days with a low pH the fourth day he’ll bleed,” Jasmina learned to notice the patterns. Jasmina finds that she has to fight to prevent a bleed from happening… requesting that the boluses treatment (medication twice a day) be continuous instead. But sometimes the replacement doctors are hard to convince. Dialysis occured at 7 o’clock at night… “Sébastien can’t express himself,” so, Jasmina goes on instinct, making sure that Sébastien is comfortable.

Tuesday, Sébastien was feeling better. “Sébastien sleeps with his gloves on! It’s his new thing. And he loves – I have to mention it quietly – he loves ranch popcorn. He licks it and puts it in the ‘lick pile’ and he has a ‘crunch pile’ too. And he makes sure he finishes all the popcorn.”

Today is World Kidney Day… have a good day!

 

Posting shortly

Shortly. That’s just the word my dad would use. I have plenty of news for a blog post, most of which came from a late night conversation with Jasmina… So it’ll be up soon. Shortly.

Friday’s quote

When I was young, we didn’t have television. It was my conservative parents’ decision. Until I was 7 we didn’t even have the unit, and it was just before Christmas that they had bought it and installed it in an impressive wood cabinet in a corner downstairs. The first video we watched was “Rudolph the Red-Nosed Reindeer”. Not having TV gave us opportunity to read. And read. And read. For the most part, my brothers, sister and I are bookworms, and as typical bookworms, everyone but my sister has glasses. If it has been too long since I read a good book, I get a kind of restless feeling and I have to find a book, and I’ll squeeze in reading on lunch hours, car rides, and free evenings. Then, I’m alright for awhile…

Jasmina also likes to squeeze in her reading and is reading The Alchemist, in German. I’m reading The Pillars of the Earth, as a co-worker gave it to me to decide whether or not it was worth embarking on a Medieval journey that took 973 pages to tell. I’m almost done the book and feel that I’m finishing it too quickly… I will miss the characters I’ve come to know and my lunch hour will feel empty. There was a quote from the book that seemed to apply to Jasmina, David and Sébastien…

“Having faith in God did not mean sitting back and doing nothing. It meant believing that you would find success if you did your best honestly and energetically.” (p. 417)

For as long as I’ve known David and Jasmina, they’ve lived the quote every day.

Preschool

I don’t know what the chances are of meeting David during a weekday on a lunch hour walk… We work in different neighborhoods, my lunch hour is from 1 to 2, and I don’t always decide to visit the little French bookstore on Provencher unless I need to. But there he was, the smiling driver of the beige car that passed in front of me, as a Vital Transit bus moved on to leave him space on the snow-narrowed street. He’d just been to À la Page, taking advantage of a client re-scheduling to get the French activity books Jasmina could not find in Toronto. My book-oriented walk in the snow came from an evening call with Jasmina. A staff member asked Jasmina if she had registered Sébastien at a preschool in Toronto. Sébastien falls into a difficult category… for now, he’s special needs, and David and Jasmina want his schooling to be in French. It’s hard to imagine Sébastien heading off to school, and I think David and Jasmina have the same feeling, not doubting his ability to grow from the experience, but doubting that the teachers and bus drivers would be able to properly cater to his medical needs. It didn’t seem to be a concern for the staff member… if it was up to her, I think Sébastien might already be halfway out the door, on his way to Sunnybrook School. Given the situation, David and Jasmina have decided that for now, homeschooling would do the trick, until Sébastien is back in Winnipeg and can register closer to home, in French, merci!

Until then, the little family is anxious to be back “home” on Gerrard Street. Sébastien is getting better and Monday was his first walk outside since he’d been admitted. I inquire how the speech therapy classes are going… “It’s really interesting, they’re good teachers! There are four stages of speech development and Sébastien is at the third. The class ends around 9:30, and then I come back to tuck him in.” Sébastien is already starting to say two word sentences, and somehow we get on the subject of walking at night and Jasmina says that, apparently, if you walk confidently there’s less chance of being attacked, “though I’d probably never go out later than 11 in Toronto. I learned that Sébastien has to take the lead when we talk, and it’s made us closer.” She’s happy the program is all about early intervention.

“Is he back on the transplant list?” I ask… “Well, last Thursday, Sébastien went for a venogram and we’re just waiting for the results.” The venogram is the last test before getting back onto the transplant list, and hopes are high. The test is used to assess the  condition of the veins. In Sébastien’s case, it’s to be able to tell where to “hook up” the kidney during transplant. Sébastien’s new kidney will be near his groin, on the left side. I teased and said that we’d get Sébastien this t-shirt post-tranplant.

Wishing you all a good week!

An interview with Shania’s parents

Sébastien had his central line replaced last Friday… Hopefully, the new line will decrease the infection Sébastien has been getting, and have him back on the transplant list soon! I thought I’d post the second interview I’d mentioned in February, and this time, we have the honor of having Shania’s parents talk about how they stayed together and happy, despite the challenges of having a daughter in the advanced stages of neuroblastoma at age 7.

We dated for 11 years before we got married.  Of those 11 years we lived together for 8.  We were married in August 1997.

When Shania was born she was a healthy child and had been up until June 2006, when she was diagnosed with stage 4 neuroblastoma.  She was 7 when she was diagnosed.  While growing up Shania was a very happy child, always smiling and laughing.  Shania was mature for her age and was a solid “A” student.  Shania loved school, that is where her heart was and is.  She wanted to be a teacher when she grew up.  Shania loved everything that life had to offer.  She could take a plain box and make it into hours of imaginary play.  We are privileged to have Shania in our life.  When Shannon, her sister, was born Shania was the proudest sister.  She loved her and was a great big sister.   Prior to Shania getting ill, we do not believe that we had anymore challenging times then any other family with children, jobs and bills to pay.  We both knew what we wanted in life for us and our children.  We tried to keep the focus on what was important to us.  After Shania was born Shayne continued to work full time.  I stayed home with Shania for a year and 18 months with Shannon.  I then returned to work part time.  We felt it was important to be home with them as much as possible, while they are young.

We have a positive attitude about life and tried to maintain that positive attitude throughout Shania’s illness. (Even now that we have lost her).  We really enjoy being a family.  We can’t imagine a life without children.  They are an absolute joy.  However a positive attitude is not the only thing.  We kept the respect for each other.  Everyone deals with things in their life differently.  Everyone’s needs are different and we need to respect that.  In our family we focus on communication but more importantly listening to each other and respecting the differences that we each have.  These differences make each of us so special. We were also fortunate to be able to take the time off from work and totally focus on Shania, Shannon and us.

We believe that we had a strong relationship prior to Shania’s diagnosis.  During Shania’s treatments, surgeries and transplant we drew our strength from each other as well as from our family and friends.  However Shania taught us that no matter what you may be facing in your life you can always make a difference.  Shania always kept a positive attitude and during her treatments decided she wanted to help other children.  She did not want to see any other children have to suffer.  She started by selling bracelets, key chains and necklaces.  This was how Shania’s Sunflower of Hope got started.  It has grown beyond anything that we ever imagined and in 1 year has raised over $64,000.00.

Thank you Jacinta for the opportunity to be in your blog. We started up Shania’s website to keep our incredible supportive community up to date on Shania’s condition and also to help with her fundraising efforts. Writing Shania’s blog has been an honour for me because there are so many special moments that take our breath away to write about, even after she is gone. Her love continues to live on not only in the hearts of the people that knew Shania, but also in the hearts of people that never met her. She had and still has that effect on us.

We have met so many special people along the journey of this horrible disease. It has been truly uplifting for us to know that there are so many kind hearted people. We will never give up on Shania’s dream to find a cure so that no other child has to suffer from this disease. Even though our Shania is gone our love for her will never die.

I have often wondered to myself (Why me?) why have I been so blessed to have these three beautiful people in my life. I feel like I’m the luckiest man on earth. From the moment that I met Karen I knew that she was special. I see those special qualities in our daughters Shania and Shannon. I don’t know what my life would have been like if I had never met Karen. But I do know that it would never have been even close to what I have now. I love my wife Karen and no matter what happens in our lives I will always love her. Thank you Karen, Shania and Shannon for being you!!!

Life is short, don’t forget to live it. Keep on smiling!
Sincerely,
Shayne, Karen and Shannon