Friday, December 22, 2006
This year is a lot different than last year. Last year at Christmas time, we were innocent, but scared. We had a surgery date--and we knew that it would be a 2-3 day hospital stay. And then, the lump would be gone and we'd all live happily ever after.
I do remember spending a very strange day trying to do a 24-hour urine collection from an 18 month old child--it wasn't fun for anyone.
This year, we have no time for fear. There may be terrible days ahead--and, like January 6, 2006, they will come upon us with little warning. And we'll rely on our family and friends and our faith when those days come.
For now, we have two delightful, beautiful, strong girls whose eyes shine when they see the red ribbons and scented candles and greenery hanging in the house.
I'm still knitting madly--now down to 1 project with a bit of finishing and 1 hopeless. And little Georgia will climb up beside me on the couch every time she sees a new project in my hands--and she'll ask ''blankie for me?". She thinks the idea of Santa and gifts is great--but he's still not a good enough guy that she'll sit on his lap.
Sydney has become a super-sleuth these past weeks, inspecting every piece of paper, reading every note, counting the number of trips we're taking to the basement. I think she's going to be surprised, but only because she's afraid of me and I've forbidden her to go into my room.
Have a peaceful Christmas. Enjoy the meaning of the day by taking a moment to remember or call or help someone else. Be kind to your family, because they are a gift to you from a higher power, given for reasons you might never understand. Stop worrying about stuff and start spending your energy wisely--on the things that nourish your family and your soul.
Friday, December 01, 2006
Thanks so much everyone for your kind words and for the bracelet orders that have been coming in. I smile and my heart warms when I think of G & S bracelets all over the country, being given to family and friends as gifts. Thank you all for helping to make this terrible time in our family meaningful.
If you do send bracelet orders this week or next, please be patient. The next bracelet orders will be mailed out on December 11 (lots of time to receive them before Christmas, if required).
I am madly knitting Christmas gifts (more on my knitting blog).
Here's a sample (with my appreciative cat):
Hugs to you all!
P.S. You can reach me by leaving a comment--they are sent to my yahoo email address. Or, you can email directly bracelet at kingston dot net (replace the words with symbols as per usual).
And a big ???thanks??? to the folks who harvested the bracelet email addy off the CityTV website and send several dozen spam messages each day in Chinese.
Thursday, November 23, 2006
Monday, was a fabulous, exhausting, wonderful day. We drove up to Toronto for Sydney to receive an award at SickKids hospital for her bracelet fundraising.
She got the Spirit Award in the first annual Kids Believe in SickKids program.
The host of the ceremony was Erica Ehm, and Daniel Cook was there! (those of you who watch children's television in Ontario know the little redhead)
The presentation was wonderful, moving, short and sweet.
It was, however, a little like walking into the twilight zone. We arrived, and before we were at the location, 2 people had greeted me. I was then directed to the PR company table, and told when my telephone and television interviews were scheduled.
The reporters and journalists were all polite, kind and they all bought bracelets. There was television news coverage, and thank you to all the viewers for your supportive e-mails. We'll be sending out a lot of bracelets soon, I think.
The Kingston Whig Standard wrote a nice story.
Georgia was on fire--this was her pose during the ceremony, just in case someone was worried that being the sister of an award winner was going to her head.
Georgia is the one wearing a purple dress, white tights and pink boots. Yes, that's the back half of my little baby, in front of about 200 people, including a press photographer, giving us her best impression of a dancing cow.
Sydney, my dear. As a parent, my hopes for my children include that they will find passtimes that will put food on the table and smiles on their faces, that they will live fully and grasp the day, and that they will help others. At the tender age of 9, you've just about captured it.
I couldn't be prouder.
Monday, November 20, 2006
Yes, it’s been 9 months since Georgia’s diagnosis.
Good news—the latest MRI is clear! Next one in January, and if all continues to go well, we’ll go to 6 month checks.
It’s been such a terrible, blessed year so far. We’ve met some great friends at Camp Trillium, and they have an event for the kids once a month through the winter. Sydney loves going to these events, because the volunteers are willing (and young enough) to piggy-back her all day if that’s what she wants.
Sydney also has some good news—she is to be presented with an award from Sick Kids hospital for her fundraising. We’re so proud of her and all her hard work—and she can’t wait for another excuse to dress up!
Bracelets—yes, we’ve got bracelets. Still knitting them, still amazed at the people we’ve met because of them. There are the ‘girl power’ girls, the folks at the St. Lawrence College Bookstore, a sweet lady from Kingston who dropped by one day with $100 cash that a friend had given her for The James Fund, grampie and his bottomless change jar, the residents at a retirement village who donated embroidery thread, and my mother who knits tirelessly.
Thanks for your support and prayers everyone—they are priceless to us.
Monday, September 11, 2006
It was nice to hear that my family isn't the only one that deeply appreciates but at the same time has suggestions and criticisms about the way our medical system and our society treat our families. This isn't a disease that goes away when the initial testing and treatment is done. Sometimes the fight goes on for years and years.
When we're away from work, we aren't shopping or enjoying good food or relaxing. We're probably driving or sitting in a waiting room on fairly uncomfortable chairs or camped out beside a hospital bed and a cranky child who wants to move around and can't. Maybe we're sipping coffee from a paper cup (and, surprisingly, hospital coffee isn't too shabby these days), and trying to get the poor kid to eat something she doesn't want (but, honey, if you don't eat the jello, you can't have toast tomorrow morning--kids don't get that logic, because they want TOAST, right NOW).
It was comforting and amazing to hear the stories of the incredible caring and support we have all received from hospital staff (and these are wonderful people, doing a job that must tear them apart), and some of the bureaucracy and budget issues that make things more difficult for them and us.
Most of all, it was sitting in a room with people I would otherwise never have met, and feeling that in a deep and overwhelming part of all our lives we have so much in common. Now I know why people go to support groups.
Wednesday, August 30, 2006
Camp Trillium provides camping and recreation for children with cancer and their families and we were lucky enough to have a week at Garratt's Island.
The week was joyful, like when ten children eddied and scrambled and waited impatiently for a nest of baby turtles to climb out of a hole in the ground, one-by-one, and scramble away to their new lives; or when my little girl put on safety equipment and scaled a 30 foot climbing wall (while I chewed my fingernails down to the quick).
There were laughs, when the entire camp dressed up for a 'wedding' in costumes from the costume trunk, including my husband in a fuscia skirt and myself in a mosquito netting 'sari'; or when all the 'sheep' counsellors had to be bathed 'in the lake'.
There were moments of deep connection with other parents who have had to stand by and watch their children undergo painful and dangerous procedures in order to fight their disease. I met parents who spent weeks or months in the hospital caring for children, who lost their jobs or gave them up, who exposed themselves to radiation because their child's therapy was too dangerous for hospital staff. I am in awe of these people.
There were moments of hope and peace, meeting parents and siblings of survivors, meeting a mother who has lost a daughter to cancer who is a wonderful mother to her children.
Georgia loved the other children and the turtles, Sydney loved the archery range and kayaking. Scott enjoyed the peace and quiet. What a great rest.
Friday, August 18, 2006
To get a good parking space, you need to get there before dark, but at our local drive-in there's lots to do. They have a new splash pad that's free for all right now, and both Sydney and Georgia enjoyed tramping through the water.
Then, we went over to the mini-golf course. Now these people know their marketing. When you're inside the mini-golf hut, waiting for your turn to pay, there is a shelf laden with sweet and gooey candy concoctions--right at the eye level of a 2 year old.
Now, Georgia is certainly not one to leave a shelf of brightly-coloured candy unexplored. She reached her little paw right up there and snagged a gigantic, sugar-coated gummy-thing and popped it into her mouth--add 25 cents to the bill, please. Now, I know I let her get away with more than I should--having that neuroblastoma roulette wheel rolling over her head does that to a mother. But she looked so damned cute, with that big hunk of sugar hanging out of her mouth, she looked like a kitten after her first hunt. I just smiled, took her hand and led her away from the candy counter.
We played mini-golf. Sydney is just old enough that she's very competitive, but she still can't beat her daddy, and it kills her. She is so cute when she's trying to be blase about something, but she can't turn off that inner competitor, and I know that will do her well in the future.
I had a great time doing something that I might have, in the past, viewed as a necessary time-killer between parking and seeing the movie.
Now, I consider every moment I spend with these little marvels a moment to be savoured, learned from and tucked away into my memory banks.
Sunday, July 30, 2006
An ironman race consists of: 4 mile swim, followed by a 112 mile bike ride and then a full 26.2 mile marathon. Wow! It's a difficult thing, a feat that takes as much mental strength and focus as physical fitness. I could never do that.
Know what? He wore one of our G & S bracelets during the race.
I've been told (and not by Steve directly) that when he was feeling really sick on the course, when his body was hurting and he wanted to stop, he would look at that bracelet and think, "This isn't that hard."
I'm so touched that our little bauble can be such a source of comfort and inspiration for others, and that by sharing our story we are Helping Other People Everyday.
Congratulations, Steve! And thanks for showing us that ordinary people can do amazing things when they set their minds to it.
(Sydney is away, spending a week at her great-aunt's home in Thornbury--we expect her to return thoroughly spoiled and sold out of bracelets. Georgia is here, revving up for a week with Daddy, raising cain and repeating every new word she hears.)
Friday, July 28, 2006
Her friend Nikki will be starting a 24 hour blogathon tomorrow to raise money for childhood cancer research.
Georgia will be one of the children featured during her blogathon (I think at 2 am on Sunday).
For families in Ontario, Canada who are fighting cancer (anyone in the family, not just children), there is an organization called Cottage Dreams that matches up families with cottages, to give them some time away together. Pass it on.
Syd & Scott went to the Hilary Duff concert in Toronto the other evening. They took the train and had a great adventure in the big city. Our friends at the James Fund arranged for better seats during the concert (thanks!), but we weren't able to arrange for Syd to meet Ms. Duff and give her a bracelet. It didn't matter to Sydney--she had a wonderful time and arrived home exhausted.
Taking Georgia and our pooch Charlie to a party at the lake tomorrow--photos will follow :)
Sunday, July 23, 2006
Thursday, July 20, 2006
We’ve seen kindness of every type from our family and friends, who looked after Sydney when we had to travel, made us meals or simply listened when we needed to talk. Strangers have taken up the cause of our beautiful little girls, befriended us and given us incredible hope and courage. Other families who are fighting this terrible disease, and many who have lost children to it, have given us their time, their support and their love.
And in the middle of it all, Georgia continues to grow and develop. The scars on her abdomen are fading, but I’ll always see them.
Georgia had her six month MRI yesterday. The day started with a whimper, when Scott gently awakened me and explained that I’d set my alarm wrong and missed our early wake up by an hour. Instead of arriving at the hospital by 7:30 am, we couldn’t hope to be there before 8:30. We all piled into the minivan and dropped Sydney off at my parent’s place. Georgia complained bitterly about her imminent state of starvation when she caught me sneaking a cereal bar, but she didn’t mind missing out on the coffee.
We were whisked right into the pre-anesthetic area in the MRI department and Georgia was set upon by two nurses and two doctors. She put up with all the probing and prodding with a bemused expression. She barely spoke, and she didn’t object to the gown. She seemed almost resigned to it, or maybe she’s forgotten our previous dozen visits there (hopefully). It’s nice that she cooperates, but I would almost rather see her fighting and complaining and getting ready to take somebody down with her.
I put her on the table, held her hand and kissed her face while she inhaled the gas, and then came the worst moment of every visit—I turned my back on my baby and walked away. Even freshly brewed Starbucks coffee tastes bitter when your baby is asleep down the hall at the mercy of a huge, loud, metal machine.
A little over an hour later, we were reunited with our groggy, ravenous child. She bounced back incredibly quickly. We left the MRI department at 10:30 and by 12:15, she was in the deli of the IKEA chowing down on a hot dog and fries.
We saw Dr. Cook in the afternoon for a quick examination. Everything looks good. No MRI results yet. We’ll let you know.
Sydney has been doing a ton of fundraising, writing thank you notes and making appearances. A couple of stores in Kingston have approached us and asked if they can sell bracelets. Her total raised for the James Fund is now over $10,000. We are so proud of this little girl, who has taken such a difficult time in our lives and given it such positive energy.
I’ll finish with the thought I repeat to myself every time I walk away from my sleeping baby:
If God came to me and told me I could choose to give away the cancer, but I would have to give up the child and take another, what would I do? I’d tell him ‘no, thanks’. I wouldn’t give up my precious G and her toothy smile and her ‘doo-doo’ and her innie-outie belly button, not in a million years. Not ever.
Sunday, July 02, 2006
Last Friday, there was a fundraiser at a local company--in honour of Sydney and Georgia, with proceeds donated to The James Fund.
Victor Campbell shaved his almost-waist-length hair:
And then, the boss (Steve Wright), shaved his head, too:
We were all there to watch and cheer, and snack on the wonderful lunch buffet:
Georgia is feeling fine these days. Mom's blood pressure is going up a little again, because our next MRI check is on July 19th.
Sydney was bubbly and gorgeous and helpful as usual. And we got this great photo of the bracelets in action:
Wednesday, June 14, 2006
We visited the Kingston television station, CKWS, for Sydney & Georgia to be interviewed by Anthony Agostino. For those of you in our area, their television debut will be tomorrow (Thursday, June 15th) on the 5:30 Newswatch program.
Mr. Agostino was late for our appointment, so Scott asked if someone could give us a look around the building while we waited. In a few minutes, Rob McDonald, the Operations Director, came down to the lobby and gave us the grand tour.
First, he took us through the radio booths. At that time of the afternoon, they were empty. Computers were running the radio. We saw the television and radio creative departments, where the writers and video magicians create TV advertisements and the audio gurus tend the MP3 music and sound library.
After a quick tour through the film library, the editing booths and the control booths, we reached the piece de resistance--the television news studio. Sydney was immediately drawn to the chair in the middle of the news set. Georgia didn't know which shiny, blinking machine to climb first.
They fired up the cameras and we got to see ourselves in the monitors, in front of the Newswatch background. Then, Sydney, Georgia and I stood in front of the green screen for some fun. She did the weather report, and had a little fly around the city of Kingston.
Mr. Agostino arrived with Ray. Scott and Sydney did their interview about Georgia's illness and Sydney's fundraising, with a bit of Georgia thrown in for comic relief. They are also interested in the June 30th fundraiser, where Vic the welder will have his hair cut for the Angel Hair kids wig program, and proceeds will go to the James Fund.
After the interview, the news team was setting up to tape some afternoon teasers--and news anchor Bill Hutchins was so kind to Syd. He had her sit beside him while he did the taping, and she got to push the button to bring the weather forecast up onto the screen. She was thrilled.
Scott was just as thrilled as Sydney by all the activity. Georgia took it all in perfect stride. The best part of the tour, for her, was the ‘wall o’ candy’ machine.
As if a visit to a television studio wasn't enough excitement for one day, last night the local firefighters were doing an exercise to improve their rating with the insurance underwriters (and hopefully lower our insurance premiums). We live in the country, so there are no fire hydrants--fire fighting power is determined by how fast the department can move water from a nearby lake to the site.
The test involved 7 tanker trucks, 5 pumper trucks, lots of activity at 3 locations, lights & sirens past the house and a 600 gallons per minute water cannon across a field--for 2 hours. After Sydney & neighbor April waved at the first few trucks going past, we loaded everyone into the minivan for an impromptu inspection of the proceedings.
At the Loughborough Lake site, we saw a pumper fill a 10,000 gallon tanker truck in 3.5 minutes. And how do they know they're full? When water starts gushing out the top!
We followed the path of the truck to a field behind the local hardware store, where the tankers were emptied and a pumper shot water into the air in a huge arc. We also got to see trucks coming from both directions, and lots of waving fire fighters.
We followed a truck to the other loading site on Collins Lake. Coming over the hill, the sight of flashing lights was spectacular (especially when you know it's a drill and no one is hurting). There were police directing traffic as the tanker trucks turned around and hooked up to the pumpers (1 on each side of the road). All in all, Scott, Sydney & April seemed to enjoy the spectacle. Georgia, again, was a bit blase--but then there was no candy involved, so I can see her point.
Help support the fight against childhood cancer
Tuesday, June 06, 2006
Scott talked to Dr. Cook this week and Georgia’s bone scan came back clear of cancer (yay!). That nasty kidney is still there, but if it leaves us alone, we’ll leave it alone. As for the neuroblastoma, the next MRI is in mid-July.
The girls are in the tub right now, Sydney is giving orders and Georgia is disobeying them. Even so, disagreements seem to work out better in the tub than on dry land. Maybe it’s the bubbles, maybe it’s the fact that a slap with a wet washcloth doesn’t hurt, maybe everything is just a little more fun in the tub. Maybe everyone should take a bath every day.
I also HAD to include this photo of Georgia on the potty—she found the magazine in Daddy’s ‘library’ and just helped herself. (Gosh, I hope this isn't considered pornography).
We stopped by the Cancer Society’s Relay for Life overnight event at the Royal Military College on Friday night. We signed Georgia in as a survivor. She was issued a blue T-shirt (which she refused to put on), a yellow SURVIVOR ribbon and a pin. She did wear the pin and carry the ribbon. Scott, Sydney and I were given ‘Caregiver’ pins and we took part in the Survivor lap—the first lap of the evening. I took Georgia’s hand and we strolled past hundreds of luminaria, each with the name of a person who fought cancer. It was almost overwhelming. I was inspired to see all the blue T-shirts in the crowd that night, including a few children not much older than Georgia. It was even more touching to see the people without pins. These are people who’ve given up a whole night of their life to help others. I thank them, although that word seems just too small.
Sydney’s new fundraising promoter, Mr. John Wright, took her around to all the tables at a community breakfast on Saturday morning and they sold bracelets. They raised another $312 that morning. Thanks so much to John for his interest and his compassion and energy. He is planning a fundraising event at his company in Kingston, to benefit the James Fund, and I think he’ll have more surprises for us in the future.
Scott, Georgia and I will be off to Burlington next Saturday for ‘Sam’s Day’. I’m knitting bracelets as fast as I can, and so are my mother and sister. Sydney will be at Brownie Camp next weekend. We gave her the choice, because we don’t want her to be ‘the cancer kid’s sister’ everywhere she goes. We want her to be just Sydney.
The last five months have been, without question, the most difficult of my life and Scott’s. We are blessed to have so many supportive, caring and loving people around us. We could never thank you all in person for your prayers, kind words, cards and e-mails, thoughts and deeds, but do know that we are thankful and that we feel the love and positive energy that surrounds us and some days holds us up.
One more thought about the tub; if you add enough bubbles and give it a good, vigorous stirring (with lots of splashing), everything seems to come out clean and new—just like this week’s bone scan.
Go take a bath.
Sunday, May 28, 2006
We made brownies!
What could be more beautiful than two little girls with their faces covered in brownie batter?
Another trip to CHEO this week. I try so hard not to be a psycho mom. I try not to make things difficult for the wonderful people who work with sick children. But next time I’ll speak up.
The visit this week was for a bone scan. For you and me, a bone scan is a simple thing—get an intravenous injection and come back a few hours later, stay still on the little table while the machine whirs around you for about 40 minutes and you’re done. When you’re almost two, it’s not quite that simple. For Georgia, the intravenous injection went fine. It’s the staying still part that’s the deal breaker for her.
So, they sedate her—with chloral hydrate (anyone know how to make that stuff taste better?). The senior nurse and I agreed on a time for sedation—and the younger nurse brought the medication in 30 minutes early, then left the room. She left my little angel and I facing each other over a syringe full of pink syrup that looks like it should taste like strawberries or bubblegum or something. The first swallow went fine—she hadn’t had any breakfast, the little dear. However, after that first taste, she put up a fight worthy of the great white whale and the giant squid. Finally, I had to resort to soother-napping to get her to open her mouth for me. I almost wonder if the nurses weren’t hiding behind the door watching and laughing. We both ended up covered in the sticky stuff, and I think I swallowed almost as much of it as Georgia did (the this-stuff-doesn’t-taste-that-bad ploy didn’t work).
After I calmed her down, she played with the buttons on the television for about 15 minutes and then she had a nap. A lovely, peaceful rest.
The sedation lasted until we reached the nuclear medicine department. Then, she tried to sit up (like a little drunk) and that, as they say, was that. No more sleepies. Not even a top-up dose of medication could give the desired result.
The solution? We hold her still, two minutes at a time, as the machine does the scan. Now, she was very good (still a bit sedated), especially when they were doing the skull scan and she had to stay still with the scanning surface up against her nose.
But next time, I’ll know—don’t let the sedation be rushed. Follow my instincts. Play it cool. Sneak up on her with the syringe, and steal her soother.
(P.S. We’ll have results next week. Help Other People Everyday.)
Tuesday, May 23, 2006
Sydney and Scott are both going gangbusters on fundraising and spreading the word about life with cancer.
Last Thursday, Sydney was the special guest speaker at a gala reception for the James Fund. She was quite nervous, because she knew she’d be speaking to 400 people. She did great, and I think a few tears were shed in response to her true heart and the love she has for her little sister. FYI—standing up at the front of a theatre looking at 400 people is a daunting task—these theatres are quite high and set up so each seat has a great view of the stage and the rest of the room is darkened—it truly is a sea of faces. We were so proud of our little girl.
After the presentation, there was a wonderful reception with fabulous food and a silent auction. Sydney and others circulated through the crowd and sold bracelets. After about 2 hours, they had raised over $2,000 for the James Fund. In total, the S&G bracelets have raised almost $3,400 in 4 months. If you want bracelets, please let me know.
I had the honour of meeting three other neuroblastoma mothers at this event. Pam Birrell lost her son James in 2001. Two other women, one with a son who is clear of disease and one who lost her daughter 7 years ago, both introduced themselves to me. I was so touched by the courage of these women—to come to an event that must surely bring up all the old pain and fears (they could have chosen to just write a cheque), and to do it solely for the benefit of others. Their grace, their kind words to me and my family, and their support, were the highlights of the evening for me.
Thanks to Miranda and Sean. They graciously agreed to take the girls and entertain them in Peterborough while Scott and I saw the movie. After 2 hours, Miranda looked exhausted, but they both stayed and helped us right to the bitter end—at midnight! We couldn’t have done it without you two. Aunt Jennifer & Uncle Scott gave us a very welcome place to stay and rest after the gala—thanks for the hospitality! Thanks as well to the generous donor who paid for our tickets to the event.
Scott has become active with our local chapter of the Canadian Cancer Society. He has a dream of becoming a motivational speaker and I’m thrilled that he’ll be speaking to a group in Ottawa about our experiences as a cancer family.
As for the bracelets, Paula Huck took up a collection from local business in Gananoque to help with bracelet expenses (I don’t take any money from bracelet sales for that). Between Paul & Paula, their daughters Bobbi & Sasha, Howards Marine, Murchie’s Home Improvements and generous donations of embroidery thread from Lori Miller and Angela Robinson, I was able to make almost 300 bracelets (will translate into $900 for the James Fund). Each bracelet made from now on will have two monogrammed beads, a G and an S, to personalize them for Georgia & Sydney.
The next bracelet event is Sam’s Day to benefit the James Fund on June 10th.
Thanks to each of you for your thoughts and prayers, your kind words and thoughtful acts. We can feel the positive energy that surrounds us every day and it helps so much.
Hug someone today.
Sunday, May 14, 2006
I have two breathtaking daughters, who made me cards and gifts today. I have a husband, with whom I have found a frightening closeness these past few months.
I'm on call and the pager has barely chirped this weekend.
Enjoy the sun and tell someone you love them.
Saturday, May 06, 2006
They x-rayed the 'ow' leg and saw nothing.
We have a bone scan scheduled for later this month.
And, since then, there have been no more complaints. No pointing to the leg and adopting a mournful expression and bleating out 'owwwwww'.
I saw a story by Erma Bombeck, about the mothers who are destined to have children with cancer.
And I thought -- if I could give away the cancer, but I had to give away the child too and take another in her place, would I do it? And the answer, in less than the beat of a heart, was NO. It doesn't matter what we have to go through. In the end, the light of her life has already more than made up for anything that comes at us.
Tuesday, May 02, 2006
Now, in a 'normal' family, the parent would just keep on with life. For me, time hiccups. Is it the start of metastatic cancer?
So, like any hyperparanoid cancer mom, I called the hospital. Left messages with the nurse case manager. Spoke to her. Made an appointment for today. Fretted, spent my day on the edge of tears, sucked at work (actually asked my co-worker to keep an eye on my work), didn't sleep.
Today, before we make our 2.5 hours (each way) visit to the oncology clinic, after I've taken another day off work, she points to a bruise on another part of her leg and tells me 'ow'. The previous spot, the one mid-tibia, that's been worrying me all week, that seems to be forgotten.
I've trained her to show me pain. I've become a psycho mom, I know it, I can see it, I understand it, it's driving me insane. But I can't help myself.
Sunday, April 30, 2006
Georgia feels great. As a matter of fact, at church last week, during the children’s story, she ended up behind the minister, mimicking his arm movements. Then, for the piece-de-resistance, she lifted her dress and showed her beautiful belly to God and everyone else in the church.
Her newest trick, and the move that both delights and terrifies me, is her complete comfort as she flies through the air. It started off innocently enough, with the normal parent-throws-the-baby-an-inch-from-the-hands, and she laughed. Now, she comes to me on the edge of our bed (and it’s a high bed), I pick her up, Superman-style, she flings her hands out in front of her and I throw her into the air so that she lands on the bed. She thinks it’s the greatest thing. She’s actually missed the landing (once, and I wasn’t the one who threw her) and crashed, face first, to the floor. But that didn’t stop her from wanting the thrill of flying. I love that about her.
Sydney’s fundraising was featured on the front page of our local weekly paper, the Frontenac Gazette. She looked gorgeous.
Sunday, April 23, 2006
Georgia doesn’t have to learn to do that. Her gift, the great gift of a child, is that each moment is lived so fully, experienced with nothing held back. Someone telling her ‘No’ brings a wail, she drops to her knees and hides her face like the world is ending. And, when she does a somersault, she lands on her back and cries ‘Yaaayyy’. The pure joy of those moments, the absolute roller coaster of any 10 minutes of her life, is how we should all be living.
In medical jargon, this week involved the 2nd post-care MRI for a 21 month old diagnosed with Stage 2B neuroblastoma on January 6th at the time of excision.
For her parents, it involved a drive to Ottawa, a sleepless night (mixup, silly us, missed Ronald McDonald House, had to go to hotel), no breakfast for a baby who loves her food, waiting, having a nurse take her vitals and letting her cry when she had to change into the gown (apparently the gown is a marker of a hard day to come), waiting some more, laying her on a table where a very nice doctor puts a mask over her face, holding her hands while she breathes in the anesthetic and then walking away from her for over an hour, drinking lots of coffee and listening carefully to the overhead announcements while we wait some more. She took the anesthetic so well this time (left her soother in her mouth under the mask) that she was having a peaceful nap while she recovered from the drugs. Rest of the day: feeding the hungry baby, removing her IV, wheeling the stroller over to the clinics for her first doctor appointment, waiting while they tried to get the MRI results (nope), quick visit with the urologist, lunch break, upstairs to the Medical Day Unit and waiting in the playroom (with the great clown Molly Penny), more vitals, urine collection (she did look really cute trotting around with that little bag peeking out of her diaper), blood collection (the obligatory cry—and parents admonishing the nurses—why didn’t they take blood while she was unconscious earlier?), waiting for another hour or so, visit with the medical student (her medical history is now too long for me to tell anyone in a few minutes, and they realize that, thank goodness), meeting her post-care oncologist, and getting the phone number to call next week for the radiologist’s report on the MRI. Drive home. Try to relax for a week while we wait for the results. She told me to call after 2. I’ll be on the phone at 2:01.
We went bowling yesterday, and Georgia beat us all. On the 2nd game, she scored 143.
Bracelet update—Sydney has now collected over $1,000 for the James Fund. We have been invited to their Gala on May 19th, so that Sydney can help to sell more bracelets there. They’re expecting 400 people, so my mother and sister are now knitting bracelets, too. Lori and Sasha at my work are doing a great job raiding needlepoint stashes for embroidery thread.
Sydney was interviewed by a reporter from our local weekly paper (the Frontenac Gazette) this week about her charitable work and she gave a presentation to her Brownie troop with one of the local cancer centre nurses.
Scott and I are getting by. I have to admit, every time G points to a leg or arm and tells me ‘ouch’ (this cancer metastasizes to bone and causes pain), I take a deep breath. But, if her hat is pulled off the wrong way, she says ‘ouch’. Some days are harder than others when the gorilla on your back is this huge, but each clear medical check is a milestone that will take us closer to success in Georgia’s fight against this disease.
I took the day off, and Sydney, Georgia and I met my sister Rhonda in Toronto to spend a day together. This week’s trip was prompted by an invitation to a James Fund tour of the laboratory at the Sick Kids hospital in Toronto where they are doing research on neuroblastoma—the ugliest word in the world, as another mother told me that day.
Melanie, that mother, was the most striking person I met that day. A petite woman, holding herself together for her little girl, she showed me the true meaning of courage and strength. No soldier or politician or lion tamer could claim bravery in the face of battle that this mother shows. Her beautiful daughter is about the same age as Sydney and fighting recurrent cancer—the odds are against them but I sincerely hope they win—please keep both of them in your thoughts.
Highlights of our trip:
Georgia playing ‘make faces’ with a teenager dressed in black clothes, with a pierced lip. They played the game, with Georgia leading the way, for about 15 minutes. When Georgia pulled the finger-in-the-nose trick, the girl laughed and said “Well, she found one I won’t do.”
The four of us (Rhonda, Sydney, Georgia and I) sitting for photos in the little instant photo booth at Toronto’s Union Station.
Georgia at the Royal Ontario Museum, as she watched a girl with cerebral palsy brushing the sand off a ‘dinosaur bone’ in the children’s discovery area.
Thanks to all of you for your support, your prayers and your replies. Some days, the love and concern that surrounds us is what keeps us going.
We’ll be heading up to CHEO in Ottawa tonight for the next MRI recheck tomorrow—staying at Ronald Mcdonald house tonight. Syd decided to stay with her grandpa, once she learned that RM house is NOT a huge playland.
Thursday, April 13, 2006
She can climb out of her crib now, and her playpen. She is adept at undressing. She’s learning how to work a doorknob. If you find a naked blonde baby in the middle of the street at 3 am, she could belong to us.
We had Georgia’s first MRI check, and her first physical examination for follow-up, and both were fine. She’s missing an adrenal gland, but no new lumps or bumps in her abdomen. Next MRI is on April 19th, and we’ll be able to stay at the Ronald McDonald house the night before—thank goodness. It’s no fun traveling two hours in a car with a 20 month old who isn’t allowed to have breakfast.
Sydney has continued to raise money for The James Fund by selling bracelets for Georgia. She presented Sydney Birrell with a cheque for $871.50 on March 16th. I had to work that day, but Scott and Georgia were present. They met the incredibly inspiring Birrell family. Our contact with them and The James Fund has led us all to commit to doing more. This is the only fund that channels money directly into neuroblastoma research. If we ever have to face chemotherapy or worse with Georgia, then the work The James Fund has done is our best chance for a brighter prognosis.
The past few months have been quite challenging for Scott and I. When a kindly man sits you down in a little room with no windows and tells you your baby has cancer, the world becomes a fog for days and weeks on end. We’ve done a lot of soul-searching, and reached some amazing conclusions. The things we used to think were important, the pride of owning a house, the satisfaction in paying our bills and having a few nice things, driving that car—those things do not matter. At one point, I was at peace with the possibility of losing my job, our house, my car and quite likely having to declare bankruptcy. And it just didn’t matter. Kindness to others, consideration, empathy, and spending time loving the important people in our life—those are the things that matter.
It’s funny, being a member of a ‘cancer family’ now—how the perceptions of people who haven’t fought this disease are so black and white—you have cancer and then you don’t. In reality, remission is a gray area. Continued monitoring is a fog. That terrible foe could return at any time. And, we are well aware, if neuroblastoma comes back, the odds are greatly against us. But we’ll still fight. We’ll still smile. We’ll still thank you all for your incredibly comforting support and love, for your prayers and kind words and your thoughts of our little angel.
What we’ve decided to do, what we instinctively did without really discussing it, is this: spend time with our children making each day a special day. We have dinner together every night. We tell these precious little girls how much we love them—every day. We try not to yell. We try to have a happy time, a moment for a cuddle, a smile and a laugh. I love sitting on the cold kitchen floor while Georgia runs across the room and launches herself into my arms. I revel in snotty kisses and peanut-butter hugs and ‘help’ folding the laundry.
For now, we are lapping up every minute of the smiles and sound bodies both our daughters are enjoying.
Sunday, March 19, 2006
Georgia has had an enlarged left kidney, which we knew about before she was born. It hasn’t caused her any trouble, and the doctors have been monitoring it on a fairly regular basis to ensure that it continues to function normally. We have been going to CHEO (the Children’s Hospital of Eastern Ontario), about a 2.5 hour drive from our home, to see her pediatric urologist about every 3-6 months.
At the ultrasound in early December, they noticed that a lump over her right adrenal gland was growing. Now, it’s been there since birth—babies can have hemorrhaging during labour, and she had a hernia on that side in her groin that affected her ovary (that’s the surgery she had at 7 weeks of age), which lives near the kidney as well. But hematomas (the leftovers of hemorrhage) don’t grow. We were scheduled for an MRI.
The MRI had to be done under general anesthetic. The machine makes very loud noises and she has to stay still inside it for about 40 minutes. She did great.
The MRI showed that the lump had indeed grown, and we were referred to an endocrinologist and a surgeon (coincidentally the same surgeon who had repaired her hernia). They were concerned about an adrenal tumour, and the endocrinologist ordered testing to find out whether it was producing adrenal gland hormones. There were several tests ordered, including a 24 hour urine collection (ask me about it someday—collecting every drop of pee that comes out of a toddler). The surgeon saw her and the surgery was scheduled for January 6th.
Pre-surgery, the tests all came back normal. They were pretty sure it was a benign tumour called a ganglioneuroma. Georgia was admitted the day before her surgery. She had to be given an electrolyte solution through a nasogastric tube to purge her intestinal tract so that the lump could be removed by laparoscope. She was a trooper, even with litres (it seemed) of stuff coming out of her body all night.
On Friday, January 6th, 2006 (a date I will never forget), Georgia had laparoscopic surgery to remove the lump. The nurses and doctors were wonderful. The anesthesia resident took her from my arms and she went willingly. The little darling was so interested in the hallway down to surgery, she didn’t look back.
After the surgery, a few hours later, Dr. Rubin took us into a little room off the waiting room. If they take you into a little room with a box of Kleenex and a couch, beware. He told us that the tumour was a neuroblastoma, a kind of cancer, and that he was putting in an urgent referral to the oncology service. We would see an oncologist later that day, and we could go be with Georgia in the recovery room. We were numb.
She was so brave, so strong. She stayed in the hospital for two nights after the surgery. She helped us push her IV pole when we went for walks in the hall. By 24 hours after her surgery, the doctors still wanted her on a liquid diet. She was not impressed. She gave us hell for eating food in front of her. Now, she won’t touch jello, apple juice, popsicles or chicken broth. The morning she was discharged, she fell in love with a little tykes car she could get right into and ride around. At one point, she sped off on me while I was trying to talk on the phone.
We got home Sunday afternoon. On Monday morning, I went to work. The hospital called at about 9 am, we had to be back there at 1:30, and be prepared to stay for 4 days for testing. My boss has been wonderful through all this, letting me leave a moment’s notice, with no idea when I’ll be back. He’s never raised an eyebrow, and his support is greatly appreciated.
We had 4 days in a row of tests, including 3 days with sedation and a general anesthetic for a bone marrow aspiration and biopsy. Georgia came through great—except the fasting. She gets suspicious now if breakfast isn’t served right away in the morning, and I don’t blame her. We met several nurses and a social worker. We were put into contact with support groups and charities to help with travel expenses. We weren’t able to get into the Ronald McDonald house because it was full, but a local hotel offers reduced rates to families at the hospital for their children.
We waited for the test results for several days. These were the longest days of my life. We spent them, as much as we could, hugging and loving our children, laughing with them. I don’t worry about spills any more. I don’t care if Georgia smears spaghetti sauce in her hair. Dirty children are great. Dust keeps.
We were called back to the hospital and told the best news possible. As far as they can tell, the surgery removed all of the tumour. We are incredibly fortunate that Georgia has that bum kidney, because otherwise, we still wouldn’t know this cancer was inside her. Given any other situation, and given the way her type of tumour behaves, we probably wouldn’t find out until it metastasized to her brain or her bones and caused terrible pain. At that point, they need intensive chemotherapy for several months and bone marrow transplants. We are so blessed.
Neuroblastoma is a terrible disease. It strikes children. It is the most common solid tumour in children after brain tumours. There is a 15% 5-year survival rate. Most of the time, it isn’t found until the child is sick because it has metastasized.
We are so lucky. Georgia doesn’t require any chemotherapy at this time. She needs several MRIs over the next year, with the next one being on February 10th. We are praying that Dr. Rubin got it all.
Scott and I have realized how special our little family, and the larger family of friends and relatives is. We are so thankful for your support, phone calls and notes and prayers. One of my clients and some of my co-workers have graciously included us in their prayer group wishes. The parents of one of Sydney’s classmates made us dinner one night, and dropped it off at our home. Our caregiver has taken the children several days without charging us, and she’s been incredibly lenient about her 2-weeks notice for time off. My mother and sister have cleaned my house, made us food and looked after Sydney when we had Georgia at the hospital. Scott has been a wonderful father and husband through all of this.
If you are spiritual, please take a moment to send healing and supportive thoughts to all of the families of the children undergoing chemotherapy and dialysis on the CHEO 6th floor day medical unit. Please also pray for the doctors and nurses to gain the skills and knowledge to cure more of these children, who have so much bravery and dignity in their fight against these terrible ailments.
We are also incredibly blessed to have such a wonderful sister for Georgia. Sydney, upon being told of Georgia’s diagnosis, immediately decided to raise funds to help kids with cancer. She started a collection at school, has made posters, and told her brownie troop about it. She’s also told her cousin Taylor, who is a powerhouse fundraiser as well. These are a couple of special little girls.
I’ve designed and made beaded bracelets for Georgia. If you would like to wear a bracelet in support of Georgia, please let me know and I’ll mail them out. We also plan to sell them to help Sydney’s fundraising efforts. If you’d like to help, just let me know.
These are the charities that Sydney is collecting funds for. She is collecting spare change, and will split it among the charities. Any help you can give would be such a kind gesture for this sweet girl, who is committing herself to the only thing within her power that can help her little sister.
This Charity, the James Fund, raises money for neuroblastoma research in Canada. It is run by parents who lost a wonderful little boy to this cancer, and there are articles about him and the charity in the February 2006 Reader’s Digest and the March 2006 Canadian Living.
The Candlelighters, or the Childhood Cancer Foundation is an international charity that helps children with cancer and their families.
MOST IMPORTANTLY, GIVE SOMEONE A HUG TODAY.
Faye & Scott, Sydney & Georgia
Sunday, January 01, 2006
This is only the beginning.
You need to maintain your master list and schedule, updating them at least every three months. Your plan and your list will evolve over time and that's the beauty of this system. If something doesn't work out the way you planned it, then simply change your plan.
The full series of exercises can be useful as an annual update of all your goals and progress.
REMEMBER TO KEEP TRACK OF YOUR PROGRESS! Don't get so overwhelmed by the things you want to do that you forget how much you've already accomplished.
This goal-setting exercise is a tool that can be used to address other aspects of your life as well including family, home, education and fitness.
Sit down and write our your tasks and your obstacles and strategies for the next three months.
This is your master list. You may wish to format it as a table.
Look at each strategy and estimate how much time it will take. If it will cost money, then set a budget. Set a deadline for each strategy. Add the budgets and the deadlines to your master list.
Obstacle: lack of time
Strategy: set aside time each day for writing
Time: 2 hours each day
Obstacle: lack of knowledge about markets
Strategy: research on the web and at the library
Time: 10 hours--5 on-line and 5 at library
Cost: $5.00 for photocopying
Deadline: 3 weeks from now
Now, pick up a pen and schedule each strategy into the next three months. As you complete each strategy, cross it off your master list.
Were you able to find time for each task? Are there some tasks that will need to be postponed to the next three month time period?
Now, make reasonable appointments with yourself to get your work done. Some writers prefer to work in the morning. Some people can commit only 15 minutes a day, but that time will add up--and it's better than 15 minutes spent watching the tube.
Look at your three-month goal and tasks and ask--what are the obstacles to completing these tasks? Make a list--list them all! Include your motivational obstacles like fear and family resistance. Include lack of time if it applies. Include lack of knowledge if it applies.
Now put the list in order of importance. Which of these obstacles is the most difficult for you to deal with? List up to ten in order of importance. If you have more than ten, you can deal with some of them in the next three-month period.
Now, for each obstacle, come up with at least one strategy for dealing with it or overcoming it. If your goals are important enough, you will find a way to overcome these obstacles.
Obstacle: Lack of time
Strategy: Make a little time each day, get up an hour earlier
Strategy: Read inspirational books, listen to tapes
Obstacle: Lack of knowledge of suitable markets
Strategy: Research on the web and at the library
Come up with a list of your obstacles and strategies. Were there any obstacles you need help devising strategies for? Did you come up with any strategies you'd like to share?
Set as many or as few tasks as you need to accomplish your three month strategy. The tasks may include a certain number of pages of rough draft, a list of topics that need to be researched, a certain number of submissions, etc. Make these tasks as specific and measurable as you can.
Instead of: Write outline for novel
Measurable task: Draft 80 page outline for novel
Instead of: Market research
Measurable task: Compile list of 20 markets suitable for my finished project
How many tasks did you need for the first three months? Are the tasks as specific and measurable as you can make them?
What steps do you need to take to reach this goal? If you aim to produce a certain number of finished manuscript pages, then break it down into drafting and editing phases. If you want to submit a manuscript to an agent, then you will need to include market research as a step. The project goal could be to submit an entry to a certain number of contests over the year.
Break the one-year project down into four three-month phases over the next year.
One-year project: To complete a 300 page book manuscript
Phase 1: Research and 100 pages of rough draft
Phase 2: 200 pages of rough draft
Phase 3: Editing and research--completed 2nd draft
Phase 4: Get feedback, final edit--completed third draft
Now, YOU DO!
Were you able to formulate a written one year goal? Is your one-year objective specific and measurable? Did you divide it into four phases?
Most of us have a long-term goal, a dream, that one shining moment we imagine whenever the sister-in-law says, "But you aren't a REAL writer."
Write it down. Whether it's your guest spot on Oprah, your first paying job or handing that SIL a hardcover with your name in gold foil, write it down. You don't need to share this with anyone, but you do need to put it in writing and keep it in a safe place.
Now, think about how long it would reasonably take to reach this objective. Remember that most well established novelists have been working at their craft for at least a decade. (Stephen King's been writing and submitting for almost forty years.) Non-fiction writers, if they've got a marketable idea, can break out much more quickly.
Now, looking at that dream for twenty years might be a little discouraging. That's why the next step is to set objectives closer in time.
Look five years down the road. Where do you want your writing career to be? Do you want to be making a certain amount of income from your writing? Do you want to have your first book published by then? Do you want to have your first manuscript ready by then? It takes a first novelist an average of 4-5 manuscripts and 5 years to be published.
Now repeat the process for two years and one year from now. Write all these objectives down. A useful exercise is to list them together and keep the list in a sealed envelope to be opened in one year. There are software programs to guide you through this process, but part of the exercise is to write them down. Then they are truly yours.
Spend 5-15 minutes each day this week thinking about and writing down your long-term goals, dreams and aspirations. Make a list that you can post near your work area, or tuck away in the calendar to monitor your progress.
More next week!
(if you want to e-mail me or post comments with questions, I'll do my best to answer in a timely fashion)