In the Can

Yesterday was adventure day for our little troop.

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.

Cheers,
Faye

Help support the fight against childhood cancer

The first 5 minutes . . .

My girls will be on television (Kingston local station CKWS) tomorrow night at 5:30!

More on our adventures in television land later on.

Cheers,
Faye

All clean and new . . .

Hi everyone,

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.

Cheers,
Faye

Beautiful is as beautiful does

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.

Cheers,
Faye

(P.S. We’ll have results next week. Help Other People Everyday.)

Da Georgi

We have had a little scare with Georgia. She was pointing to her shin and telling me ‘ow’ quite consistently for several days. Of course, she always has bruises on her legs because of her daredevil personality, and it’s likely a combination of that and the fact that when she tells me ‘ow’ she gets a kiss. But, because neuroblastoma can metastasize to the bone and show up as bone pain, we called Dr. Cook. Dr. Cook saw her the next day and couldn’t find anything. The x-rays taken that day were clear. We’re booked on Thursday for a bone scan at CHEO, just to make sure everything is truly okay. All prayers and healing thoughts gratefully accepted.

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.

Beautiful Mother's Day

I have so many reasons to be savouring this wonderful Mother's Day.

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.

:)

Looking for serenity

The doctor examined G, poked at her legs and, of course, the little darling showed no pain.
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'.

Toddlers.

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.

Cheers.

Not yummy, not soccer, just psycho mummy

This, I think, is one of the hardest times for me. Georgia was pointing to a spot on her leg and telling me 'ouch'. She's been pointing to the same spot and telling me the same thing for about a week now--no visible wound.

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.

Georgie Flies

Dr. Cook called. The MRI showed no re-growth of the tumour (yay).

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.

Waiting

I’m listening to a song called “Live Like You Were Dying”. It talks about a man who learns to savour each moment and forgive and see tomorrow as a gift. I’ve been thinking a lot about that idea lately. How we get so wound up in the future, so focused on what will happen, that we almost forget to celebrate how wonderful today is.

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.

Cheers,
Faye