Sunday, April 30, 2006

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.

Sunday, April 23, 2006


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.


G does the big smoke

Georgia is doing fine. She’s learned about ‘Hi’ and ‘Bye’, which was a great source of entertainment on our train trip to Toronto last week—she was like a miniature queen, heading down the aisle, waving to her beloved subjects.

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

Georgia Unleashed

Georgia is feeling great, except for a little croup. She has actually never felt ill, and that in itself is a huge blessing. So many children with this disease are bedridden with terrible pain that morphine can’t relieve.

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.