History

Wednesday June 24, 2009 10:36 AM CDT

Wednesday, June 24, 2009

Today is the day I have been waiting for since December of 2001, when Graydon was diagnosed with ALL. Looking past all the terror of the diagnosis and the first stage of treatment, I wanted to know when IT would all be over, when we'd know he was in the clear (oh, to be so naive again!), and the answer from the oncologist was "When he hits the five-year mark after he's finished treatment, that's when you can stop worrying."

Well, that day is here today, bring on the worry-free life!!!

We're having a party for Graydon's five-year Event-Free Survival anniversary, at a bowling centre, just like we had for his off-treatment party. Because it's the 28th of the month, and school ends tomorrow, I've had some people cancel out because of summer/travel/cottage/camp conflicts, but my entire family is coming as well as G's best friends, people from his house and my best friends, so it'll be an excellent celebration.

I did ask Graydon if he would like to retire his collection of CANCER SUCKS T-shirts in honour of his survival, but he said no, cancer still sucks. I couldn't have said it better.

Love,

Jacquelyn

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Monday, June 23, 2008 12:37 AM CDT

Wow! It really has been six months since I last posted about Graydon! I'm posting plenty over at my mom blog "Because I Said So!" on the website of Canadian Living magazine (www.canadianliving.com/blogs/mom). The name of the blog makes me sound so, what, bossy?, when in reality I always try to give my kids choices (not just my way or the highway...).

Graydon and his cancer battle, or journey as I sometimes call it, started in 2001, chemo ended in 2004, and while he has successfully beaten cancer so far, the late-effect hits just keep on coming. If it isn't learning disabilities, anxieties and poor bone health, it's non-existent growth hormones and messed-up insides. But, when people meet him and talk to him, they are always struck by what a wonderful, kind and warm person he is. On the weekend one mum of a friend of Luka's (G's seven-year-old brother) asked if Graydon was interested in serious kid-sitting in the future, because she thought he would be wonderful for her son.

That is the kind of thing I love to hear. Our childhood cancer survivors have a huge battle on their hands after the treatment is over—the chemo and radiation wreak havoc on their brains and bodies, and it takes tough kids to keep fighting even after the cancer is beaten back.

On the parents' support lists ALL-KIDS and PED-ONC-SURV I have met and made friends with many parents and kids who have won the battle against cancer and been released forever, and many other who fight on. I dedicate Graydon's 4th anniversary of survivorship to them.

Please hug your children tightly.

Love,

Jacquelyn

Thursday, January 3, 2008

Hi!

I just wanted to add that Graydon did not remember his diagnosis anniversary, and I did not remind him. The optimist in me says this is an excellent sign that he is moving on from cancer. The pessimist in me says that when he realizes the anniversary date passed with no acknowledgement, he'll accuse me of robbing him of his milestones, not loving him, not wanting to spend time with him. The hyper-pessimist in me says LATE EFFECTS! His memory is failing, his executive function is absent, how can a teenager forget something that means a meal out?!?!?

Hug those kids!

MONDAY DECEMBER 17, 2007 12:21 AM CST

Hi!

Thanks for checking in on Graydon, who is one week short of 3.5 years of surviving cancer.

I haven't been updating much, mainly because I have a daily blog over on the site of Canadian Living magazine (www.canadianliving.com/blogs/category/mom-blog/), which is keeping me busy, and Graydon's been pretty healthy, all things considered, so there isn't a lot to write about!

Today, December 17 is the anniversary of Graydon’s cancer diagnosis. Back in 2001, we spent the weekend at home with a printout of blood counts saying he had an ANC of close to zero, waiting for a fever. He couldn’t go to his buddy’s birthday sleepover party. I took him to my office on Sunday, where he helped me wrap work gifts in tissue paper, stuff gift bags, make hot chocolate and run down the empty halls like 8 year olds love to do. The next morning we were at Sick Kids at 8:30, and by 3:30 had a diagnosis of leukemia.

That was six years ago. As I write this he is sawing it off in bed upstairs with the morning off school for an appointment we’d better get ready for fast. Will he remember what day it is? We have had lunch out on this day in past years, but this year I’m not saying anything. If he remembers, I’ll buy lunch. If he doesn’t, I’ll take it as a good sign of moving on, three and a half years into being a survivor.

Yay!

Hugs and kisses to all of our kids, and warm thoughts for our angels,

Jacquelyn

Wednesday, October 17, 2007 6:13 AM CDT

Hi all!

Graydon completed his Light the Night walk on October 4 as the walk's Honoured Hero! He got to stand up on the stage with the MC Rob, voice of the Toronto Raptors, which was pretty exciting since Graydon loves basketball. There were a lot of people there, many more than last year, and the sight of all the balloons—red, white and this year gold—was pretty emotional. Tessa, Luka and I walked with him. He raised almost $900!

As I write, he is in bed with suspected strep throat, just waiting for the throat swab to come back before running for a prescription. Other than that, nothing to report on the health front. On the education front, he is attending Grade 9, afternoons only at this point, at our local high school where he has a lot of friends.

Things are going well!

Thursday, July 5, 2007 11:44 AM CDT

Long time no update!

Happy July 4 to our family neighbours to the south, one of them my brother, sis-in-law and two nieces, and Happy July 1 to us. We spent most of the extended weekend in Stratford at my parents and two sisters' houses, visiting, eating, drinking and enjoying perfect weather.

I love going home. I drove the kids out to a conservation area where my dad took me and my sibs when we were little. It is far more beautiful now than it was then (I think the trees grew, or something!).

Graydon passed his three-year survivor mark on June 24. We haven't gone out for that dinner yet—we're always late for everything—but the significance of the day wasn't lost on us. Three years off treatment seems like an incredible milestone to me. Graydon has had more than his share of late effects, but the fact that he is still kicking cancer's butt is enough for me. The other stuff we'll keep on fighting.

Graydon got some fabulous news a little while ago—he has been named the Honoured Hero in our LLS Light the Night Walk this year. He had his picture taken, and it'll be on all the fliers with Cynthia Nixon on the front.

He's planning on raising a whack of money this year, using the flier as his sales material. Pity the citizens of Toronto, and yay for the LLS!

Summer has started with no big firm plans. I am so jealous. I wish that were my summer too!

Kiss and hug your kids today!

Love,

Jacquelyn

---------------------------------------

Hi!

This one will be short and sweet. It's March Break, the kids are at Casa Loma at a circus performer show, and I am trying to work in relative peace.

Graydon had his every-three-month check-up at Sick Kids, and his counts were great. He has a problem with bone density (how many CKs don't?!?) but can't get into that clinic until August! He will be enering the long-term follow-up clinic soon, which I see as a really postive move—Graydon has a fair number of late effects, and that is the specialty of the oncologists there.

He has a full day of neuropsych tests on March 29, which I can't wait to see to find out what's happening in the grey and white matter up there (apparently his vocabulary is getting far more colourful, hhhmmmmmm).

So, that's it. Please send positive thoughts to Alexia, back in the States from South America for treatment of a second relapse.

http://www.caringbridge.org/southamerica/alexia/

May all of you on March Break have a true break!

Love,

Jacquelyn

Wednesday, January 24, 2007 1:05 PM CST

Hi friends,

Graydon and family got through the holidays just fine, with each of us getting sick with cold/cough/body flu, but all at different times! We had a great visit with my parents, two sisters, one brother, their spouses and all the kids. It's quite the happy bunch, with nine kids between three and 16. Not too much snow though.

Graydon sstill adjusting to his new school and the 90 minute school bus ride each way. He navigated his way from school to the downtown on public transit twice so far, and he seems to be getting it and enjoying it, so the key to avoid school bus motion sickness may well be the subway!

After so much upset since October, and the recent relapses and death of Baby Donovan on my ALL kids mail list, one parent was looking for ideas for her daughter's upcoming off-treatment party. Then I remembered in this very journalI had written that I would write all about Graydon's off-treatment party, which was a blast and really well attended by family, new friends and old, kids, his teachers past and present, neighbours.

So that's what'll make up the end of this entry: how we celebrated G's one year anniversary of going off treatment.

So here's what I did for Graydon's party (I was
working, happily married—at least I thought so!?!?—so
we rented a bowling alley since the guest list far
exceeded what my house and yard could hold—plus I'm a
messy housekeeper at the best of times, and I wanted
to enjoy the party too):

We printed the invites on blue-sky paper, folded them
and sealed them with a #1 Winner medal sticker.

There was one table with four glass jars of
candy—gummy dolphins (his Make-A-Wish Trip was to
Atlantis and swimming with the dolphins), Mike and
Ikes, Smarties and something else. We put "Guess
Sheets" under each jar and kids and adults could guess
as many times as they liked, but had to sign so the
winner could be called, and no duplicate guesses.

On another table we did photo albums of Graydon's
Make-A-Wish trip, plus some of the souvenirs up to
handling—mostly shells and hats and woven bags.

I special-ordered a cake with a photo of him and a
shark reproduced on the top, surrounded by an
underwater theme, and a Teenage Mutant Ninja Turtle
theme on the sides (go figure!). It was marvelled at
by all.

We had a guestbook on another table with lots of room
for comments and well-wishes. The actual only reminder
of cancer were the two big necklaces of hospital
Bravery Beads that Graydon accumulated over his 30
months of treatment. They were on that table.

I purchased enough CureSearch and LiveStrong bracelets
to give one each to every guest, and Graydon, Tessa
(his sister) and I made our version of Bravery Beads
(one stick of three to six beads on a knotted waxed
linen cord) for each female, and some of the guys
wanted them too. Kids got gift bags with small-size
wristbands and candy and bubbles.

Grandpa and I made speeches, then we presented him
with a signature ring, "Cancer Bites, but I bite back"
T-shirts, and a few little presents. Then came the
biggie—I had a big trophy made for Graydon, as a
complete surprise to him, with a victory figure and
the inscription "To Graydon on winning the biggest
battle of your life." He was flabbergasted—speechless,
actually.

We served pizza and pop.

The whole thing was a blast. We didn't have it right
when he went off treatment, because the loss of the
chemo blankie was way too stressful for me, and he
liked the idea of waiting a year "just in case I
relapse and have to give back the presents"—funny how
kids' minds work. He did receive a good number of
presents, despite a no-gifts, only-donations line on
the invite. We made him wait until home to open them.

Having the bowling alley was a major coup, because
people, especially families with kids, always had
something to do. Remembering back to parties when
Graydon and Tessa were Kaitlin's age (and my Luka is
six), decorate your own cookie tables are always a
hit—they make one to eat and one to go in a contest
(you make up the categories!). Ask friends to bring
over their dress-up boxes or tickle trunks, and
encourage kids to huddle off and make up shows, plays,
songs for a talent show before the cake. Egg and spoon
races, that kind of thing is fun. My biggest advice
would be to hire three excellent neighbourhood
babysitters and bring them in early in the
party-planning stage. They'll save you your sanity.

And so there you are!

Give your kids some hugs today,

Love,

Jacquelyn

Tuesday, December 19, 2006 10:51 AM CST

Hi guys!

Christmas is almost here, and the usual late! late! late! thing is happening—not enough cookies, not enough decorations on the tree, regrets about not starting cards earlier.

Graydon's five-year anniversary of diagnosis was on Sunday the 17th. It is a day that brings back sad, confusing, disbelieving times, and I can admit to being more edgy than anything else. But Graydon and I said Happy Anniversary! to each other, talked about it, and talked about what presents we'll take to the oncology ward on Christmas afternoon. This is a tradition Graydon has carried on of his own accord since he spent the first two weeks of his treatment in the hospital over Christmas. He gets a lot of personal satisfaction going to the ward and bringing something for each child, and for the nurses and doctors on staff that day instead of at home with their families.

His last counts were November 16, all of them good, so good I am not listing them. That's a Merry Christmas for sure.

Yesterday, with incredible timing coming the day after the DX anniversary, Graydon and I went to a fabulous event spnsored by POGO, the Pediatric Oncology Group of Ontario, and hosted by Darcy Tucker, the Toronto Maple Leaf's top scorer, and his wife, Shannon. The families got to watch a Leaf's practice, then had lunch in the Hot Stove Club, with a Christmas gift for each kid (that was unexpected!) as well as a Leafs backpack filled with goodies. Darcy went to every table, said hello, signed whatever the kids had—Graydon took his new hockey stick—and posed for so many photos that even I was impressed (I've seen plenty of back-door exits by celebs of all kinds as a writer and editor for the last 18 years). Then we all headed back down to the ice, where Darcy even helped Graydon lace up his borrowed skates! And with the bruised hand that has kept fans worried that he might not play in tonght's game against the Florida Panthers! Such a sweet guy. I cannot say enough about him. Back to Graydon—he does not skate, but he was undeterred—he borrowed skates from a friend, dragged us to get them sharpened on Sunday and to a rink to try to learn to skate in 15 minutes, then got on the ice (hanging very near the boards!) with Darcy and all the other cancer-fighting kids and mums and dads. I was a very, very proud mum.

So, Graydon starts his two-week pass from school on Friday, and the holidays will begin! Merry Christmas, Happy Hanukkah and best wishes and healing and healthy thoughts to all!

Love,

Jacquelyn

Thursday, October 26, 2006 2:46 AM CDT

Hi all!

There isn't too much to report right now. Graydon's total donations for his first Light the Night walk are at $681, and his goal was $500. Way to go, Graydon!!

The Canadian Living article with the story of Graydon's duel with leukemia has been out for two weeks, and we've had lots of great feedback from his teachers and friends and doctors and nurses. One well-meaning friend said "Wow! What great airbrushing they did on you!!" Hhhmmmmm. I actually blow-dried my hair for the event, instead of clipping it and letting it go wavy. That must be what she meant! Graydon and his braces look great. I think his orthodontist should use it for advertising.

Graydon's regular NP is back after a lengthy leave. His appointment has been shifted until November, so we'll have to wait to see her. On the other hand, it's excellent news when your oncologist says four weeks difference in your checkup is no problem--that's the news you want to hear. So, no counts for now.

Lots of prep for Halloween. Bought candy today, ate candy today. Back to the store!!

Please leave Graydon a note in the guestbook or give him some cyber-hugs.

Hug your kids tight for real!

Love,

Jacquelyn

Sunday, Ocober 8, 2006

Graydon's biggest comment about Light the Night was "That was LONG!" It was four kilometres, but something about walking in the dark, at the end of a school day when his legs were already hurting made it seem like twice as long. (That counts for me too!) Our very small team of 7 (thank you to Kelly, Peter, Madison and Hunter) was the very last batch of walkers for almost the entire four kilometres. The parade of lit-from-within red balloons carried by friends and family really outnumbered the white balloons carried by survivors. It was very sobering. I met Theresa, a friend from the ALL-KIDS mail serve I'm on. We haven't met in person before, but I saw crowds of walkers wearing T-shirts in honour of Teresa's son, Marcus, who earned his wings two and a half years ago after a 10-month battle with ALL. I found her and said hello—despite her grief she had pulled together a team to walk in Markie's memory. If you'd like to say hello and show her some support, his CB page is http://www.caringbridge.org/mn/markie/

Graydon raised $586 by himself, which I think is pretty respectable. I predict he'll start with the fundraising efforts earlier next year, and do something at his school when he is more comfortable there. He is still having a difficult time—cancer has cut a pretty wide swath through my boy and there is still lots of healing to do.

Thanksgiving is almost upon us—not being really big lovers of turkey, our family will be patching together an interesting buffet of each person's favourites: white rice, smoked salmon pinwheels, pierogis, sushi, cornbread stuffing and Greek salad. Go figure!

My two sisters and two nephews drove in yesterday for an entire day of cleaning, sorting and packing—sisters worked, cousins played. We worked all day, and it is horrifying how much stuff a family can amass in 14 years! We've only just started. That is what I am truly thankful for this Thanksgiving—my sisters, brother, parents, daughter, sons and friends who stand by when you need them most.

Huge hugs all around! Love, Jacquelyn

Wednesday, October 4, 2006 4:38 PM CDT

WOW!

SEPTEMBER IS OVER!
The kids and I had a whirlwind whip through southern Ontario theatre this month. Outdoor theatre, indoor theatre, comedies, musicals, Shakespeare, backstage tours, family workshops, costume tours. It was all for an article I'm writing. When it's closer to publishing, I'll say which magazine. Graydon found out an interesting nugget of info, and it has to do with a new use for vodka (and that was at a theatre, not later in the hotel room!).

SCHOOL
This year we have three kids in three different schools. Little Luka continues in his, Tessa is in an arts high school, and Graydon is lucky to be in an amazing school where the emphsis is on learning and cognitive problems, gaps in schooling as well as other issues related to his treatment. Getting him into the school (teacher to student ratio is 1 : 4) was one thing—getting him to go TO the school is the other. He gets sick on buses, planes, boats, and the ride is between an hour and a half and an hour and three-quarters. YICK. There aren't a lot of other ways to get him there.

INNOVATIVE CAR POOL IDEA
If anyone reading this makes the trip anywhere close to Yonge and Eglinton every morning from Bloor West/Kingsway/Sunnylea/Queensway, shoot me over an email.

HEALTH
Graydon has been feeling sick and yukky a lot. He sleeps way too much, has terrible balance, gets dizzy a lot, drops things. Is this normal 13-year-old-itis? He has incresing pain in his ankles, legs, knees, hips and back. He's had al the bone scans, and now we're waiting for the call.

EMOTIONS
And now, as a cancer-mum friend of mine said, it is time to talk about the great big elephant sitting in the middle of the room. Alan, The Husband and The Dad, moved out in January. I have been searching for a fulltime job so I can take care of the kids with some level ofconfidence. But finances dictate that we must sell our home, and that plus hunting for a new one to fit the four of us that I can afford is tough going. We moved in here when Tessa was only six months old and Graydon hadn't even been born. So, it has been a very sad and emotional time for everyone. Oh well, Graydon pointed out in the car last night, That which doesn't kill us only serves to make us stronger. Out of the mouths of babes, even if they're 13!

LIGHT THE NIGHT
Graydon and I and Tessa and Luka will be walking in our first Light the Night Walk tomorrow night. I put his fundraising letter on this site so all could read it. PLEASE KNOW that there is no pressure to donate here if you're on the ALL-KIDS or the PED-ONC-SURV lists. Others who haven't a sick kid and have some s[are charitable dollars they haven't allocated yet, please feel free to donate. The LLS will accept donations after the walk in Graydon's name up to four weeks after the walk.

If you pray, could you please include Graydon's psychiatrist's husband in your prayers? He is in a coma and not expected to survive.

Please hug your kids tonight.

Love,

Jacquelyn

SEPTEMBER 15, 2006
Graydon had a pretty excellent summer. For the first month he goofed off, played on the tire swing with Luka, got a new bike and whipped around the neighbourhood, went to the movies with his friends. My brother, Ed, his wife Sandra and the two little princesses Maddie and Ashley came across Lake Ontario from Lewiston, N.Y. and docked at Ontario Place. We spent the afternoon with them (kids having a great time in the park, me sleeping off the gravol I had to take to eat lunch on the boat—it was a great sleep), and then they took Graydon downtown for an excellent Chinese meal.

August brought the tied-for-first-place summer event: Camp Oochigeas. For thirteen days Graydon leaves all the worries at home behind him and heads north two and a half hours to this camp for cancer kids, on treatment and off treatment. His homesickness lasted for the shortest time ever, then it was nonstop fun—photos to follow.

Oops. Just noticed the time. Will have to get right up to speed next time.

Good night for now; hug your kids.

Love,

Jacquelyn

June 5, 2006

It's been a long time since an update, which is a very good thing in OT land. Graydon is coming up to his second anniversary of going off-treatment, and things are looking very good count-wise:

WBC: 5.5
RBC: 4.78
HGB: 133
PLT: 283
polys: 2.42
atyp. lymphs: 0.06

Things are not going so well at school. I think the late effects of his chemo (intrathecal methotrexate and vincristine) have really been showing themselves in his lack of executive function, learning disabilities, short-term memory, etc. Add some emotional upheaval here at home, and he's feeling pretty down. I have been searching out other schools for him for Grade 8, because high school is right around the corner and he is a very bright, social kid, and I don't want him falling between the cracks because of academics. There is a very promising school that is showing interest in him, so cross your fingers.

On a different but very much the same note, I am writing a story for the magazine Canadian Living about seeing your child through a life-threatening illness. It is something a dear, old (he's not old, we've just known each other forever, and since I'm not old [!?!?!], how could he be?) editor friend told me I should write when I felt enough time had passed and I could get some perspective on the whole situation. Well, no sooner had I started assembling my notes to start writing than I felt the most tangible writer's block I have ever encountered. After procrastinating as long as I could without losing the assignment, I have written a tangled mass that logs in at about five times the assigned length. Now I need to put it aside for a bit and then come back with a sharp pencil (or a scythe) and get at it. It is scheduled for the November issue. And I have to let Graydon read it as well: it's one thing to write about him here, but I do need some kind of buy-in or approval from him before I send this off.

Can't wait for summer!

I hope all of you are well—big hugs to all the kids fighting out there!

Love,

Jacquelyn

Thursday February 9, 2006

LATE EFFECTS REARS ITS UGLY HEAD AGAIN
This is just a short entry. Graydon had bone mineral density scans this week and the NP just called to say the results are abnormal, and Graydon will be seeing a new doc at Sick Kids to go over things with us. It does go a way to explaining Graydon's painful knees and legs and back, though. It's sad and disheartening how this this childhood-robbing cancer can't just back off and leave him alone! Now I'm off to google osteopenia and osteoporosis.

If you have time, please say hi in the guestbook, or leave some hugs. Graydon is pretty down about this latest news.

Thank you, and I hope you and your kids are sharing hugs and kisses BEFORE Valentine's!

Love,

Jacquelyn

Monday, December 26, 2005 9:34 AM CST

MERRY CHRISTMAS!

I hope the holidays are off to a great start for everyone! We started the big day off at our home in Toronto, where Santa found the couch and filled it with goodies for Graydon, Tessa and Luka. Before he left the house in the wee hours, though, he made time to complete the questionnaire that Tessa and Luka made up for him--"How did you get your job? [by working very hard and always being kind to people]; Do you know the Tooth Fairy? [yes]; What is your favourite food? [hot soup]; plus about twenty more!

Graydon has elevated gift-giving to an art--his choices for family always show plenty of insight and imagination. He seemed a little disappointed in his "take" until he was told to get his boots on and grab something out of the car. The thing was an adjustable basketball net (a gift split between his dad and I and Grandma and Grandpa Vintar). Now Graydon is hoping for a green winter so he can get right at it--fat chance in Toronto!

After brunch--not the organized affair I intended, but food eaten while perched anywhere there weren't presents or wrapping or tins of cookies or boxes or undetermined origins or destinations!--we set to organizing the gifts Graydon was taking to Sick Kids Hospital. Graydon was diagnosed on December 17, 2001, and as we parents of leukemia kids know, the day of diagnosis is the day treatment starts with a big bang, and Graydon was admitted immediately. He spent all of Christmas and the holidays in the hospital. Spending Christmas day in the hospital had two sides for Graydon--it was really sad not to be at home and in Startford with all his cousins for Santa's visit and tons of food and excitement all day long, BUT Sick Kids certainly knew how to keep the little ones busy on Christmas day, with visits from Santa Claus, and firefighters, and policemen and others.

Graydon wanted to be part of Christmas day for kids stuck in the hosptial, so he started off the next Christmas taking in goodies for the kids--Kernels popcorn the first year--and my homemade cookies and candy for the nurses and doctors, and chocolates and herbal teas for the parents' kitchen. Last Christmas we took super cool decks of playing cards by Umbra, some shaped like dog bones, some like fish. This year, we did little finger puppets made of terry cloth, and pretty pink bracelets, and beaded necklaces (made by Tessa and I) or door hangers with Bart Simpson on them saying KEEP OUT! We wanted to hit all the age groups. For the nurses and doctors, it was fancy iced sugar cookies and spice cookies.

After Graydon and his Dad made that trip, we packed the cars and headed to Stratford. A typically 1.5 hour trip turned into three hours, thanks to rain, greasy roads, then wet snow, then real driving snow and that freaky hypnotic snow effect and icy roads. Three extra-large cups of coffee later, we pulled into Stratford just in time for me to pass around the dessert I was responsible for bringing. Thank God my sister Juli did a 15-pound turkey, so there was tons to eat.

Today we'll go to my sister's and ice cookies and let Graydon and Luka go nuts with their cousins Kevan and Nicolas. Graydon wants to tobaggan and Boxing Day shop (don't know if that's the correct order!), Tessa wants to shop, Al doesn't care and I want to sleep. Hmmm.... I wonder who'll win out?

I hope all of you have a medically uneventful holiday, have plenty of peace and fun and family times. I'm thankful for having Graydon with us, thankful for a year and a half off treatment, thankful for everything (except the credit line at the bank, which I wish would dry up and blow away).

Happy New Year to you all!!

Love,

Jacquelyn

Tuesday, October 18, 2005 8:44 AM CDT

MAKE A WISH HAS NEW OFFICES!
Two nights ago, Graydon, Tessa , Luka and I went to the official opening of the Toronto chapter's new offices. The new space is so nice, I think I'll be submitting my CV sometime soon--bright, modern, roomy (but I did hear lots of stuff is still in storage!). The highlight of the evening was a visit with Mickey and Minnie Mouse. It was worked out that each family got to spend some time with the famous characters and had Polaroids taken with them. Graydon had a riot, as did Tessa and I. Luka, 4 years old, plastered himself to the wall and refused to detach. He had earlier in the evening announced to a room that M & M Mouse were not real, they were just "guys in suits." We told him it was just a fun time, but he thought differently. After we were handed our photos and cute stuffed Mickeys, he told us, "I don't know those guys. I no want stwangers to touch me." Kinda sad, kinda smart. He sure loved the stickers, tattoos, puzzle book and pencils though!! Once I figure out how to scan the Polaroids, I will post the one of Graydon and Mickey and Minnie--he'll love it!

SCHOOL FRONT
Graydon brought home a quiz marked 19/20. Freeze this moment in time. He is struggling with school, and struggling with the struggling, if you know what I mean. But a mark like this goes a long way in letting me think he is going to beat the marks-thing just like he beat the C-thing. Yipee!

GRAYDON'S COUNTS
Trick heading--he only gets his levels checked every two months! Nothing to report until next month. That's now a relief.

THANKSGIVING
We travelled to Stratford for Thanksgiving last weekend--had an excellent time, my sister Heidi did the Big Bird, new stufing with orange zest--one of Nigella's recipes I think. Plenty of fun for the kids--they have four cousins living there of corresponding ages, so it's super social for everyone.

HALLOWEEN
Graydon is going as an old-time mobster/mafia boss; Tessa is going as Tinkerbell's evil, twisted cousin, and Lukie wants to be three things: a Mutant Teenage Ninja Turtle, a real ninja, and a puppy dog. We'll neeed to be working out the logistics to that one!

THANK YOU for dropping by. Sign hello in the guestbook or give Graydon some hugs above.

Love,

Jacquelyn

Tuesday, September 6, 2005 8:19 AM CDT

BYE BYE SUMMER!
Wow, that went quickly! Graydon went to Camp Oochigeas (www.ooch.org) a fabulous camp for kids with cancer, staffed by the most incredible counsellors and nurses and doctors and volunteers. This was Graydon's fourth year going, and his best one so far. I did NOT receive a scribbled letter saying "I hate camp." Instead this year the only thing he pleaded for was that I tell the nurses he could have 2 gravol if he couldn't get to sleep (the effect of crickets and creeping homesickness after lights out). As for the rest of the summer, we threw in a birthday party at a friend's cottage, a daytrip to Muskoka, a few trips to my parents and sisters' families in Stratford, several movies, TONS of shopping for camp and back-to-school and trying to survive what must have been the hottest, most humid summer on record in Toronto. We just got back from our yearly Labour Day weekend at my brother and SIL's family lodge--a big, beautiful lodge with cabins that was a money-maker in its day, but is now just for family use. My bro married into a family of three strong, intelligent sisters, with a wonderful mum, Joyce, and now 6 grandchildren. Add in my 3 and another friend's child, and we had 10 kiddies and 10 adults. It was a great weekend and the best way to end the summer, with one exception. Read next entry.

HOW NOT TO GO AWAY FOR THE LONG WEEKEND
Do not get on a 12- to 18-lane highway at 4:30 p.m., do not do stop-and-go traffic for 1.5 hours, and definitely do NOT look sideways at your daughter while your foot is on the gas. Don't bang into the car ahead of you. Make sure kids are OK. Make sure poor guy ahead of you is OK and not driving a Porsche. Do let the paramedics do a roadside EKG, but wave off suggestions to go to the hospital. Jump in the tow truck, go to the collision yard, compare your damage to everyone else's. Get a rental. Proceed to destination in the dark, without the gol-darned map that is in the sick car. Collapse in bed 6.5 hours later. Check for bruises in the morning.

HELLO HAMSTERS
We added five hamsters to our family this summer. Joining Hammy Yu-gi-oh, teddy bear hamster with long, flowing hair, are Miss Jelly Bean (dark grey) and Princess Lou Lou (honey-coloured) in a second cage, and Ooch (white with sandy patches--named after the camp), Crazy Connie (all white, named after two of Graydon's favourite nurses) and Victor (all white, and named after his oncologist), in a third cage. I said we would never house vermin in our home. But the five new rodents are dwarf Syrian hampsters (I think) and are pretty cute and compact. Miss Jelly Bean is a dead ringer for the starring mouse in the movie Mousehunt. They provide me with company in the wee hours of the night!

GRAYDON'S COUNTS
He was in clinic August 18, and had fabulous counts. He deserves them!
WBC 6.9
RBC 4.76
HGB 131
PLT 366
polys 2.83
I still sit on pins and needles until I see the lab report for myself each time. Graydon has entered his second year off-treatment, so he goes in every two months now. Please focus your positive thoughts and/or prayers on him for a moment to continue to be healthy.

THE NOSE KNOWS
The nose knows how to bleed profusely whether it has been cauterized or not! Graydon had a spate of nosebleeds (11 in 3 days, from both nostrils) just before going to Camp Ooch. Dr. James, a lovely doctor with a killer British accent, saw Graydon the day before camp at Sick Kids and did the procedures again. So far, so good. Maybe we'll invest in a professional carpet cleaning now!

BACK TO SCHOOL
All three kids go today--Graydon to a new school for Grade 7, for which he gets a bus pick-up at our front door! He is being a trooper, and I can't wait to hear how the first day has been (I'm picking him up for lunch in an hour or so to find out). Tessa is at her school, an audition-only arts high school, for an hour or so only on the first day. Luka meets his new teacher for senior kindergarten this afternoon. He woke up at 3:00 this morning and announced "I need twee tings--someting to eat, someting to dwink, and a kid show on TV." Somebody's little internal clock is wonky. He is now curled up asleep. Fun times ahead!

GRAYDON'S OFF-TREATMENT PARTY
It seems like so long ago (you can see exactly how long on the ticker), and it was an excellent party, but I will have to beg off and write the details later!

THANK YOU FOR CHECKING IN ON GRAYDON!!
Seriously. Leave a quick message, or click him some hugs. Thank you again.

Saturday, May 14, 2005 3:42 AM CDT

Hi!

I'm so glad that Friday the 13th is out of the way for a while. While we were making dinner tonight we had two all-black cats in our backyard--one ripping around, the other standing and staring at us staring at them through the back window. Pretty freaky.

THE COUNTS
Graydon's latest counts are really good--I think it's the first time since he's gone off treatment that all his numbers are in the middle of the normal range. Excellent!
WBC 8.7
RBC 4.81
HGB 139
HCT 0.404
MCV 84
MCH 28.9
MCHC 343
plt 338
MPV 8.3
Polymorphs 3.92
Eosinophils 0.17
Lymphocytes 3.83
Monocytes 0.78
Atyp Lymphs 0

OPERATION GRAD DRESS COMPLETED
Ha! That would be a grad dress for his sister Tessa, not for Graydon. In one day, Tessa and I shopped for and found the perfect dress, beaded wrap, shoes and beaded purse. Tessa also finished her first season of competition dance--she was in four divisions (if that's what you call them?): hip hop, jazz, tap, and student choreography--and danced five weekends in a row. She earned platinum for her choregraphy, golds for the rest, one high silver--she is very proud, and so are we. And so is Graydon, who is secretly happy that he can now assume his honoured place as the centre of attention!

MOTHER'S DAY
We started the day off by participating in Meagan's Walk, a 5 km walk to benefit brain tumour research. The little girl Meagan, who lived in our neighbourhood of Toronto, was diagnosed with pontine glioma in December of 2000, urned five on May 30 and died on Father's Day 2001. So incredibly unfair! The walk is held on Mother's Day, and is in its fourth year. It ended at the Hospital for Sick Children, where Graydon is treated, where the walkers circled the hospital, joined hands and gave everyone inside a huge hug. Pink and purple balloons were released, and it was pretty emotional. It was the first walk I have done since I was a kid, and amazingly, it went well--no fighting, bickering, complaining, and that was just between Alan and me!
Graydon did all the fund-raising and pledge gathering for the family, and we made a very respectable total. We felt great.

NOSEBLEEDS "R" GRAYDON
Graydon finally saw the ENT doctor. All his clotting factors were good, so we proceeded to have the right nostril (the busiest one) cauterized--or, based on the spectacular nosebleeds he was having, "clotterized" as G-Man termed it. He braved his way through it, even though he tried desperately to make me agree to pay him $20 for his trouble. It held until that night, when he had a series of big ones and slow ones through the night, resulting in the swallowing of lots of the red stuff and a very icky stomach and head the next day. But now, four days out, it's holding just fine. He has an appointment for May 30 to have the other side done.

OT PARTY PLANS UNDER WAY (FINALLY!!)
We are finally going to formally acknowledge and celebrate Graydon's beating cancer. I couldn't have done it last year because the end of treatment was actually a lot harder to deal with than the chemotherapy and side effects (for me, not Graydon, but then I have to plan the party, not him!). The first year is the worst time for relapse, and it looks like he has made it through, so we're having a party on the first year anniversary of his ending treatment. The actual date is June 24, which is a Friday, so we're looking at a party on the 25th, Saturday afternoon, likely 1 to 4, and probably at Bowlerama, a really large, retro bowling alley (or bowling centre, because "alley" makes it sound small--it's big enough that the bowling doesn't even sound loud). We figure that way, kids and adults can bowl as families, as teams, or not bowl at all and just hang out. We'll be renting out the whole place and ordering food so we're doing checking to make sure there isn't any other family or friends' function that will conflict with the date. Once it looks good, we'll formalize the arrangements and send out invites. IF YOU ARE READING THIS, CONSIDER YOURSELF INVITED! Just e-mail me at the address below and I'll send you a map!

Thank you for dropping by, leave a message in Graydon's guest book if you have time, and have a very happy second half of May!

Love,

Jacquelyn

Saturday, April 30, 2005 1:42 PM CDT

Hi! Graydon has passed the 10-month mark of no chemo, and things are still looking good. I was reading my ALL-KIDS e-mails, and the subject of weird reactions and things that people have said to us about our sick kids. It reminded me of a very strange encounter Graydon and I had at the beginning of his illness that I had stored in the long-term memory bank, and near-totally forgotten.

Graydon and I had to take a cab home from one of those marathon be-at-the-hospital-by-7:30-a.m.-and-we'll-let-you-go-by 7-p.m. days. It was snowing and blowing, the expressway was closed and the ploughs hadn't gotten to many streets--a 20 minute drive was going to take at least an hour. We had a Russian cab driver who talked to us lots about hospitals because he said he was a doctor in Russia, but here he could only drive cab and heal people without drugs and facilities. Then he asked us if we were visiting someone at the hospital. I said no. He said, "Your son here has cancer, I know this." Talk about freak me out!

Then I had to listen to 57 minutes of why we should change his protocol to low-risk, he should eat all vegetables raw, eat three raw egg yolks a day and he should soak in a bath of cold instant coffee, drinking strength, every night. He said for children he did not charge for healing. He would sit on a wooden chair, face to face with Graydon, one foot apart, and remain there for a half hour, and draw his cancer out. The Russian doctor estimated 12 sessions would be enough. Then we could either stop or continue the chemo. He wrote out his address, cell phone and cab company number so I could contact him. "No charge, I swear. I will cure your son."

I gave him the address of a neighbour whose house was for sale. We got out, waved until he left, then trudged back to our house. He sure sounded medically knowledgeable about the drugs and side effects and treatment, but he was a QUACK! I would have had to buy shares in Sanka.

That's it. Weird, huh?

Tuesday, April 12, 2005 3:27 PM CDT

I just wanted to say a truly heartfelt thank you to every one of you who took the time to sign Graydon's guestbook for his 12th birthday. It is actually overwhelming that with so much really important stuff going on for everyone that anyone did. I read through the posts tonight and got all teary--and with the way Graydon acted today (I would gladly pay his way to any of your homes, one way until further notice) getting teary was very therapeutic.

Anyway, THANK YOU FOR BEING SUCH GOOD PEOPLE!!!

Thursday, April 7, 2005 11:51 AM CDT

BIG BIRTHDAY NEWS
Tomorrow, April 8, is Graydon's 12th birthday, and the first one since 2001 that we haven't had to worry about germs in restaurants, so we're going all out and not having Mum cook his highness's dream birthday dinner—last year's was pierogis, cold shrimp, garlic mashed potatoes and tempura shrimp—and we are going to a restaurant instead. It will be weird but a fabulous thing to not have to clean up afterwards! Graydon's Birthday Angel Shirley, from Cancer Warriors, really thrilled and amazed Graydon with her birthday gifts. The Cancer Warrior experience is brand new to us, and it was also Shirley's first experience at it, and Graydon gives her 100 per cent, right down to the creative, handmade card, which is proudly displayed on our mantle. He is already reading one of the books, and fighting with anyone who'll bite over who gets to play that game on the Playstation next. Thank you so much, Angel Shirley.

IF you have time, please click on G's guestbook here and say Happy Birthday—he's reading all entries.

GRAYDON PLAYS HOCKEY AGAINST REAL MAPLE LEAFS
Graydon had a fab time yesterday morning at Country Style playing air hockey with Peter Zezel and three other Maple Leaf players at a kick-off for Country Style's cookie promotion—for the month of April in all Country Style locations across Ontario they'll be selling star cookies with blue sprinkles for $1.00 and $.50 will be donated to the Make-A-Wish Foundation®. What a phenomenal fundraiser. And the cookies are perfect for kids and adult dunking. Graydon got them to sign his I KICKED CANCER'S BUTT T-shirt. He was thrilled. Then a film crew came to our house and interviewed the fam about Graydon's Make-A-Wish trip to Atlantis for the Foundation's new corporate video. It was one full day! Then mum got a speeding ticket and failure to carry insurance info ticket. $170.00. Murphy's Law, yo!

THE DISAPPEARING RETAINER APPEARS!
In a coat pocket shoved behind the emergency gear in the trunk of our car. Don't ask.

NOSEBLEED-ORAMA
G-Dawg has always been prone to nosebleeds, even before dx a bit. Over the last three days he has had six or seven, some of them from both nostrils and the mouth. YUK! I even turned to my ALL-kids and PED-ONC-SURV parents for advice, and I'm usually pretty cool about nosebleeds. We'll monitor over the weekend, then he'll be going to Sick Kids on Monday to check it out. In the meantime, if you visit our house, do not look in the freezer! It is like the fridge on CSI!

I LIVED THROUGH AN IPRC MEETING
This Caring Bridge site is all about Graydon, not me, but I have to say that with an incredible amount of coaching and lecturing and advice from my sister, Jules, tons of advice from the uber-smart parents on my ALL-kids and PED-ONC-SURV e-mail list, and the support of Graydon's special-ed teacher, home-room teacher, social worker and principal, plus one full overnight of research, writing, printing and preparation, I went to the IPRC meeting and we got what we wanted for Graydon. Yay! I took in a deep blue desktop presentation board with photos of Graydon pre-diagnosis, during tx and after, draped with his Bravery Beads from the hospital and photos of him at Camp Oochigeas (his cancer camp). That, plus the neuropsych report and a six page essay on Graydon, numerous articles from Cure Search and others, lists of drugs and late effects, etc. Now that Graydon's body is healthy, we'll start chasing down that three years of school he seems to have missed!!

SAY HAPPY BIRTHDAY
in his guestbook, and I'll write later about the day, and dinner, and party. Happy birthday to my sister, Heidi, too, who snagged April 8 as her birthday a few years (?!?!) before Graydon did!

Love,

Jacquelyn

Monday, April 4, 2005 8:55 PM CDT

THE BRACES AND THE DISAPPEARING RETAINER
When I had braces, I would probably have crafted my own retainer from fibreglass and electical wire rather than admit to my parents I'd lost mine. Both Graydon's retainer and case, which looks exactly like a cake of Irish Spring soap, have been missing since last Monday. He told me on the weekend. I spoke to his friend's dad, who says they've searched high and low, and no retainer. As I moaned about the retainer and the cost of replacing it, he laughed and said they had to replace FIVE of them when his son had braces. Ah! So it's all OK then? I think we'll be working out a co-payment between Graydon and Alan and I!

SMALL RODENT LIVING IN THE LIVING ROOM
Yes, after having our beautiful Angel--a Birman kitty, four white paws--as the sole four-legged family member for a long time, we finally gave in and let Graydon, Tessa and Luka get a hamster. He is a teddy bear (?) hamster--not sure exactly what that means, since he looks like a hamster--who was so small that we thought he was a pygmy hamster. But no worry, he is two weeks in our house and he is getting bigger every day. His name is Hammy Yo-gi-oh. We bought a hamster ball, and after watching him in it for a little while, I can draw some pretty strong analogies between a hamster in plastic ball running as fast as he can, hitting roadblocks every which way he turns, with no control over the outcome, to the experience of a parent with a child with cancer. Except his ball is pink, so it makes his world look a little rosier than mine!!

He has a Habitrail (?) cage with two little condo-type pods off to the sides, a tube running outside the cage linking one side to the other, a log cabin inside and tons of fluff to curl up in. Once again, the hamster scores--cool pad!

If you pray, or have some positive thoughts to spare, please concentrate them on Donna, her almost four-year-old daughter Molly (in the middle of beating ALL) and seven-year-old son Billy. Roly, her husband, their daddy, died last week, leaving them all brokenhearted. Think of them please.

Bye for now,

Love,

Jacquelyn

Friday, March 4, 2005 1:53 AM CST

THE BRACES; THE CLINIC VISIT
Graydon got braces on his upper teeth as soon as we returned from Atlantis, and chose pale blue elastics. It's not too often that bracesare a good thing, but for Graydon, they are--the blue elastics really make the greens in his eyes pop!

You can see the normal ranges above for blood work. Graydons counts are:
WBC 5.5
RBC 4.84
HGB 136
HCT 0.403
MCV 83.3
MCH 28.1
MCHC 337
plt 350
MPV 8.3
Polymorphs 2.04
Eosinophils 0.06
Lymphocytes 2.35
Monocytes 0.55
Atyp Lymphs 0.50

Looking very good (except for that last one, which I will check on tomorrow).

Wishing everyone a great weekend!

Love,

Jacquelyn

Wednesday, March 2, 2005 3:56 AM CST

BRAVERY BEADS AND HOW WE CELEBRATED THE LAST CHEMO HOSPITAL VISIT
I don't know how widespread the use of Bravery Beads are in the States--they originated in British Columbia's Children's hospital, spread to London then Sick Kids in Toronto. I know the program is in
place in Nevada and Miami. The program allows children in Haematology/Oncology to collect beads to commemorate their fight against cancer. When diagnosed or at any time while sick, the patient gets a cord, their name in beads and a couple of starters. Each procedure/event gets a colour-coded bead:
finger poke=turquoise,
BMA=green sparkle bead,
LP= fushia,
radiation=a glow-in-the-dark bead(!?!),
hairloss or thinning=wooden face bead,
isolation=a little multi-coloured bear.
Graydon loves this program--he has had to make two necklaces to keep up. All the kids here love them--wear them to clinic, keep them nearby, wear them to camp.

SO, WHAT DID WE DO TO MARK THE END OF TREATMENT FOR GRAYDON??

We made bravery bead necklaces for the nurses and doctors (or doctor's wives, since the necklaces are a bit girly). We didn't use the plastic/wood beads of the program. We went to a jewellery bead supply house (or Walmart has a really fabulous bead department here with many glass, crystal, imported beads) and put anywhere from three to seven beads on a stiff wire, bent the end in a loop and put that on a length of waxed black or cream linen cord, then tied it so the necklace just slips over the head. Between Tessa, Graydon and I we made 35 necklaces over two nights of TV watching. We let the nurses, doctors and special staff choose the one they wanted. Everyone thought the "caregiver bravery bead" angle was funny/sweet. They were thrilled, and we still see them wearing them. We did clinic this Monday and four people were wearing them.

FOR INFO ON BRAVERY BEADS, A SUPER PATIENT PROGRAM--
copy and paste this link for the PDF explaining it all
http://www.sickkids.on.ca/womensauxiliary/section.asp?s=Bravery Bead Program&sID=4833

Sorry for the long post!!

Love,

Jacquelyn

February 22, 2005 0:51 AM CST

BACK FROM ATLANTIS!! FABULOUS WISH TRIP!!
We were there for 7 days and 6 nights, and it was grand! Since the
resort doesn't really "do" wishes--warm and fuzzy, isn't it?--there was
no greeting or special treatment there, which was a weirdly good thing
in reverse, as Graydon really was normal. (The Sheraton Gateway Hotel
in Toronto, where we spent our first night, was incredible--the general
manager set up a desserts tray in our room with fruits, cheese and
three chocolate mousse desserts with white and milk chocolate carved
dolphins and waves on the top, Sponge Bob figure drink bottles, cans of
cookies and chocolate-covered nuts, even a beautiful book on dolphins,
and a fine bottle of red wine for the parents. The captain on the Air
Canada flight told the entire plane who Graydon was and that he was on
his Make A Wish trip, and let him and Tessa sit in the cockpit with the
pilots' caps on. The Dolphin Encounters people also knew about the Wish
trip angle, were also super special to him.)

Atlantis is amazing. Lagoons and turtles and manta rays and bright fish
and huge hibiscus everywhere, with walkways and bridges snaking all
over the place. There are sloping kiddie pools, kiddie fountains, river
tube rides, a number of slides, with gullies and tubes that run under
the water, so there are fish and sharks on all sides. Graydon didn't do
the six-storey straight-down Mayan slide, and I'm only glad he didn't
want to, as I would have had to say no. There are interactive fish and
turtle feedings all day, so you can learn about the marine life.

There were complimentary arts and crafts twice a day--we HAD to do
those, and there were great crafts for Graydon and Tessa's age group.
The ocean was incredible--lots of tramping up and down the beach and
running in and out of the water! There were free movies in a 400-seat
theatre--3 per day, a kiddie one, a older kid one and a PG 13 around 10
every night. There was a children's magician in two nights who cracked
up even Tessa. We took the kids on night walks around the
grounds--incredibly pretty even at night. We cruised the casino all the
time, and checked out the big label shopping. There was a festival
on-site one day with tons of penny-carnival style games for the kids
and the Miami Heat dance girls doing the macarena for the dads. Graydon
is a dead-eye with a lot of those games, and he won himself a beautiful
plush manta ray and a light sabre for his little brother--Luka was in
tears that they didn't have enough tickets to get it, so Graydon went
back and actually won him one with fewer tickets than it would have
cost to buy at a gift shop. What a hero! Tessa made a friend in time to
go the the teen dance club--Club Rush--because she was too nervous to
go alone. NO PARENTS allowed in Club Rush. She was "hit on" by a couple
of guys--she was pleasantly appalled and secretly thrilled--thank god
we were leaving the next day!

We went into Nassau once to the Straw Market where we boosted the true
local economy by several hundred dollars with no receipts--took photos
of the kids with their purchases and the craftspeople who made them.
Duty-free shops were everywhere--duh, we didn't even buy rum. We
thought we could do it at the airport, and the airport is pretty tiny,
best we could do was a ham and cheese sandwich and a Snickers--no
duty-free shopping there!

We sat by the pool, but not a lot, really. It was warm and sunny, and
there was always a band there. It freaked out all of us how people just
broiled in the sun. Graydon and his dad freaked out on the skimpy
bathing suits. We had a water-view room that looked out on our
favourite pool, so we sat out on the 6th-floor balcony for breakfast of
cereal, fruit leather, peanut butter, crackers and Del Monte peach
cups, all from casa Vintar in Toronto. We ate conch bisque and conch
fritters. Graydon drank gallons of the local soda--Junkaroo, or Gumbay
punch, or something like that. We did crafts by the pool. I took a
Jeffery Deaver book, and didn't even open it until the fifth day.

The Dolphin Enounter was fantastic! In one of the few screw-ups of the
trip, I had read the faxed form from Make A Wish for the Encounter and
saw 3:30. In our rooms at 1:26 that afternoon, I took out the form and
read it again. DUH. The cost was $330. The time was 1:30. Could we make
it to the Paradise Island Ferry dock in four minutes? No. Much
screaming, flinging of self on bed (Graydon, not me). I called,
explained, and heard "Hey honey girl, this is the islands don't you
worry none we do tomorrow OK you give that son a hug for me now and I
put him with the Flipper dolphins much better honey God bless." It's
enough to make me want to move there. We all took the ferry--a very fun
time all by itself--to Blue Lagoon Island where the dolphins are
housed. Graydon and Alan got to have their encounter with the two
dolphins who starred in the Flipper movie. Wow. They got kisses from
the dolphins Fatman and MacGyver, fed them, hugged them, danced with
them, got umped over, and then did the foot-push--the heart of
Graydon's wish--where he floated on his front, and the dolphin came up
from below, caught his foot and pushed him up and out of the water.
Graydon said it was like flying. You can check out what the
Swim-with-the-Dolphins experience is like by checking out
www.dolphinencounters.com. It's a great site, lots of educational stuff
and photos. In the other good screw-up of the trip, Daddy thought there
was enough juice in the digital video to shoot the entire thing.
Nah-uh. It konked out before the dancing even started, so, we spent $87
US on their video and pics. Ha! Their video is way better than anything
I could have shot though. I think we'll be watching it every night for
several months.

And was Atlantis expensive? YES!! Luka got a poolside tattoo of
intertwined flames on his forearm, $20! Mind you, that included a redo
the day before departure--you can bet I hunted that girl down on
Sunday! And Luka showed that tattoo to EVERYONE he met, waitresses,
other guests in elevators, taxi drivers, security people (lots of them
around, very friendly), kids, cabana guys. He talked me into a second
one, a black and blue spider, on his upper right chest right where
Graydon's port scar is. Then Luka proceeded to unbutton his Sponge Bob
shirt and left it that way, through our big super-expensive last-night
dinner on the grounds, to the airport, and through the flight home. At
least he gets lots of mileage on his body art! Our last big dinner was
at Fathoms, with huge aquarium windows down one side and at least four
waiters per table ($235 US). The least expensive top with an Atlantis
logo was $24. Taxi from airport to resort $40. But thanks to tips from
Katie, travel blogs, cab drivers and especially Andrea at Make A Wish,
we found the Quiznos, Dominos Pizza, convenience store where water was
$1.95 instead of $5.25 for the Atlantis-supplied bottles, and various
other shortcuts. Between Make A Wish and a gift from Al's parents, I
think we will make it financially--mind you, my MasterCard exceeded its
limit while we were there. The girl I gave it to actually laughed when
it was refused, and said "That always happen honey. You give me some
more, I try them all."

The whole thing was a blast. Graydon was true to himself, and was
absolutely miserable when I would have to look at his daily
scratched-out tortured printing of activities planned down to the
quarter hour and say that is too much for one day. He shopped like a
maniac, charming the ladies and dealing with the men, breaking the bank
for mementos and gifts for other people. He shook a lot of hands and
even shared the shrimp in his jumbo shrimp cocktail with Alan, Tessa
and me. He said it was the best trip ever. It was!

Now he wants us to buy a timeshare in the adjoining Harbour Side
Resort. All donations will be gladly accepted. Just call or email him
back at graydon@vintar.ca!!

Jacquelyn

February 3, 2005 0:43 AM CST

We're getting the stuff ready for Graydon's Make A Wish trip to Atlantis, checking the video, etc. Then I had an e-mail from Robin, the brave mum of two children with ALL in which she wondered if she should make a movie of what her kids go through to show some people who don't "get" childhood leukemia.

Our hospital, Sick Kids in Toronto, has a series on Life TV called Little Miracles that has gone on for a number of years, and follows a wide range of families through their diagnosis, treatment and follow-up. So cameras are nothing new to anyone. Graydon has filmed and done opening credits, etc., on at least 5 separate visits. He has had a friend come to LP and BMA clinic days and documented the whole thing, finger poke, port access, anaesthetic
asdministration (the young cameraman and I were both shooed out as soon as G. was out). The nurses and docs did mini bios, told jokes, explained chart notations, all while Graydon or his friend filmed. During induction, one nurse prescribed that Graydon's best friend sleep over, and the oncs agreed!

I digress.

When Graydon was two months into treatment, but not back to school, the cancer link nurse went to his school with him and did a presentation to the whole school in the gym. Then the grade 3 class and interested grade 4s, 5s and many of the teachers (and some parents) got to watch the whole video, with the kids' running commentary and the nurse interjecting. Yes, all the teachers cried, but the kids were fascinated. We got tons of support at that little school.

Hey, maybe I should get that video out for his new school...

In grade 5, for a health project, he made another movie and partnered it with a bristol board display of counts sheets, equipment (all the IV apparatus, tubing, empty bags) and did a port access on his Build-A-Bear as part of the project.

Every staff member that Graydon had contact with thought it was a great idea (he thought he invented the concept, I think they'd done it many times before). Graydon loves filming (like I said, I think he made minimum of 5 of these "hospital movies"). He loved doing it. I actually found it very therapeutic for me, in some weird way, like it validated something.

And, Graydon still loves to watch his works of art. It grosses his sister out, and Dad will not watch them--they freak him out.

Love and hugs!

Jacquelyn

January 27, 2005 0:38 AM CST

WE SURVIVED THE FIRST BIG "R" SCARE
Hello everyone! This is a long post, but one that no one outside our little family can understand, so I'm spilling it here.

Graydon (11) is 7 months OT.

On Dec. 17, his 3-year anniversary of diagnosis, two big grade 8 boys "bear-hugged" him at a school dance and subsequently dislocated two of his ribs— his onc said no pain killers because pain is the second-best indicator of relapse. So Graydon went up to and through Christmas with no pain relief.

On Jan. 10 and 11 a couple of boys decided it was funny to call Graydon "Hey, Cancer Kid!" That's the first time ever. It made Graydon really sad.

On Jan. 13 an older boy, expelled from their school in October, with a history with the police (the kid is 12), entered the school with some homies, and proceeded to accuse Graydon of stealing from him. It got so threatening, and Graydon was so scared, that he wet himself. I grabbed him from school, filed a police complaint, the cops showed up at our door. Graydon couldn't sleep all night, and went to school for an hour the next day before he came home sick.

Jan. 17, clinic day, his counts are low, especially polys, but all within normal range. Graydon complains about pain in his legs, hips, side and ribs. He gets a thorough going over, and onc says he looks good. Doc tells me we can toss the rest of the Septra, and for the first time in three years, no pills to administer. Truly off-treatment. That elated feeling lasted for about 24 hours.

Jan. 18, he can't get out of bed—too sore, stubborn cough, 100° fever.

Jan. 19, same thing, 99.5°.

Jan. 20, same thing, he's sleeping basically around the clock. Take him to pediatrician who says flu, Tylenol. His lungs are clear.

Jan. 21 and 22, more sleeping, more coughing, fever zips up to 104.2° I keep telling myself "he's OT. this is just a fever, a normal fever"

Jan. 24, the throwing up starts, massive screaming headache, nosebleeds, coughing, pain in back, hips, ribs.

Jan. 25, oncology says take him to emergency. We are guests in Sick Kids Hospital Emerg department for 10 hours. Graydon looks so much like he did at dx. Pale skin, huge black eyes, slack cheeks. Except that he chose to wear his new "I kicked cancer's butt" T-shirt. I figured it was just a matter of getting the blood results back to be informed we were in for Round 2. I was cancelling our MAW trip in my mind. Graydon was too dehydrated for the nurses to find a vein (and one hip young doctor must have dug around inside G's arm for a good three minutes before the screams brought a doctor who told the nurse to stop, call phlebotomy. That took another hour. While waiting for the blood results and Xray, Graydon says: "You think it's a relapse, don't you?" I told him there are a lot of other indicators that he didn't have, and since we hadn't been whisked away to the oncology floor, it looked pretty unlikely. I didn't point out to him that we had been moved, with assistance, to a "Quiet Room," away from intake and examining, with nice chairs, soft dim lighting and a little bowl of Bravery Beads on the table. I was screaming in my head, going over stuff I'd read and filed on these email lists, thankful I'd stored Luka's cord blood a full year before Graydon was even diagnosed. Graydon then continued: "So, if I relapse, it'll probably just be tumours, which they can cut out, then do you think I would get a second wish, like because I kicked cancer's butt twice?" I laughed with him, then went to the washroom and cried.

HAPPY ENDING: Graydon has pneumonia! No relapse.

Jan. 26. Biaxin, which he has thrown up twice. Puffers, which we haven't had in the house for almost four years. And another two weeks out of school. I went in to tell his teacher, and she says "Poor Graydon. When all this is over, we have to have a meeting with the principal and discuss Graydon's options. He's missed so much school."

Oh yes, school. Like laundry, feeding the rest of the family, earning money and making sure all journal entries are grammar- and spelling-mistake free (hee, hee). Like I have time for that!!!!!

Gotta go—there's hacking and a nosebleed calling! Sorry for the super-long post. Call the 1-800-IRA-MBLE prizeline for getting to the end!

Jacquelyn
mum to Luka (4), Graydon (11, dx Dec/17/01 pre-B ALL, POG 9905--reg A, OT June/24/04), Tessa, (13), married to best friend Alan 18 years and already packing for MAW trip to Atlantis Feb. 14!

Jan. 21, 2005 0:35 AM CST

Graydon has been OT for seven months, and it hasn't been a straight
climb count-wise. Some rise, some fall; this last Monday his polys were
so low I thought I should keep him home from school, and what do you
know? He's actually sick, so I'm keeping him home. telling myself, of
course, OT means back to normal....

His NP said it's pretty common, and that it takes some kids quite a
while to get where we'd like them to be immediately.

Jacquelyn

January 21, 2005 0:33 AM CST

GRAYDON'S COPING STRATEGY FOR DIAGNOSIS AND INDUCTION
When he was dx, the way he coped with it (age 8) was to assign a cost to every single procedure inflicted on him during induction: port insertion $10, throwing up .50¢, blood tests, pokes, "Alice" shots $5. I "owed" him $420 after the 4 weeks!

I hope he gets an MBA.

Jacquelyn

Jan. 20, 2005 0:30 AM CST

THE WORST SHOTS--THE PEGS--AND HOW OUR NURSE MADE THEM PAINLESS!
When Graydon had his first "Alice" shot-- he called it "Alice barge in
legs-ooowwww" say it fast it works--it was the worst!! Our second time
in that procedure room I went in first and asked the nurses there if
any of them had tricks or advice to get Graydon (and everyone within
shrieking distance) through it. A wonderful blond woman came up to me,
introduced herself as Crazy Mary, and said she would take Graydon on.

Her procedure was to rub the thigh up and down really fast, talking the
whole time how it would make the skin feel hot, then she switched to
gentle taps that turned into slaps, really fast ones, saying "so is
this starting to hurt?? and she did it faster, then plunged the needle
in, pushed and it was over. She was the only nurse there to do it--I
CANNOT figure why--but Graydon said it didn't even hurt that way. Mary
had back-up that it made no difference how fast the stuff got in, so
she did it fast. The nerves in the leg were so rattled from the slaps
that Graydon said he couldn't even feel the needle going in.

From that time on, Graydon got Mary for every "Alice" shot, except when
she was on vacation. Then he suffered.

Ask if any of your nurses do it that way--it was Godsend.

Jacquelyn

Jan. 19, 2005 0:27 AM CST

We are going on Graydon's MAW trip Feb. 14. Because we have heard how expensive Atlantis is, Graydon has become a major money-maniac. He has since sold a cool belt I bought him for a Halloween outfit at Goodwill for $10 (I bought it for $3), a set of used skateboard trucks, has wrangled $1 for each test over 80% (he's brought home 5, I consulted a graphology text to make sure they were his tests), and wants to know what he can do in three weeks to earn more.

If anyone has any good ideas for him, send them to him!

As long as it's legal, he seems to have enough energy to do just about anything! And that must be the "power of a wish" because he is usually pretty sad and low on the energy side.

Jacquelyn

January 17, 2005

AS THE ANNIVERSARIES OF DIAGNOSIS, INDUCTION AND REMISSION START TO RECEDE OR ANOTHER YEAR
Isn't it uncanny how we can remember so many, many details leading up to diagnosis? The photos we have of Graydon just before diagnosis are his Baptism and Comfirmation (simultaneous at age 8 [but that's another story!]), just two weeks before dx, and he looked like a totally different person, so pale and small. But we can remember so much detail leading up, it's like it is frozen in time forever. Graydon never really bounced back to how he was before dx, so that is something we lost. But the boy we have now, three years later, has tons of wonderful things about him.

WOW, I DIGRESS!!!

My point, I've had three anniversaries of dx, Dec. 17., and the "monster" starts up without fail on Dec. 2, and we relive those two weeks each time. It's weird. I thought it would go away, especially now that Graydon is OT six and a half months (yay!), but it hasn't. The fear is starting to subside though, as in reliving the dx in my mind doesn't send me into an "oh my God what if he relapses?!?) spin like it did the first time. It's almost like I gain strength from thinking about it--we lived through and won that battle, we'll beat anything now.

I've found that by the time New Years rolls around, and we had gone home from the hospital, the whole "monster" begins to recede. I still remember spending a minimum of three hours a day on the phone to my office, picking up courier packs at the info desk and reading, writing and editing in the cafeteria.

Christmas in the hospital sucked big time. And even though the doctors say that Lorazepam has an amnesiac effect, I offer myself up for medical testing. I took Lorazepam every day except day one of the dx, and I remember every consult, doctor, nurse, med, visitor, meal, present, video we watched and craft we (I) made.

So, I guess how I handle it is when the "monster" returns, I tolerate it, even entertain it, but don't indulge it. Year by year, I figure it will find the visit boring, and come for shorter and shorter stays, until the "monster" just pays a courtesy call.

Hugs and good thoughts coming your way!

Jacquelyn

January 14, 2005 0:09 AM CST

GOOD EXCITEMENT, BAD EXCITEMENT
Graydon's oncologist and NP suggested that with Graydon's illness, we
wait until he was off treatment for his Make A Wish wish, so he has been planning for years!

We are going to Atlantis in Bahamas, and leave Feb. 14. Graydon's wish
was to swim with the dolphins. When he saw his sister's Mary Kate and
Ashley movie, Holiday in the Sun, he was sold! The girls actually surf
ON dolphins, and so that is what Graydon is signed up for.

If anyone has been, please tell me what it's like. We'll be there for a
week. You bet I'm a little anxious to find out what the "spending
money" entails--from what I can gather it is one expensive place. I
told the kids we'll take a suitcase full of crackers, granola bars,
cheese, bread and preserved meats, and use it for souvenir T-shirts on
the way home.

On the Graydon front, the two dislocated ribs (from the friendly bear
hug from the grade eight boys) have healed up OK. Early this week a
couple of boys decided it was funny to call Graydon "Hey, Cancer Kid!"
I'm trying to put a positive spin on that. Then, yesterday, a thug from
his school, expelled forever in October, under suspension from his new
school, and with a history with the police (the kid is 12),
entered the school with some homies, and proceeded to accuse Graydon of
stealing from him. It got so threatening, and Graydon was so scared,
that he took off for his home room.

I had to pick him up immediately, file a police complaint, the cops showed up at our door less than half an hour later (previous entries have described our house as what a place looks like AFTER a drug bust--add in all the Christmas decos half in boxes and a carpet of pine needles) (the cop said he would not report me to Child Services). Graydon couldn't sleep all night, was freaking about going to school today, came home in the morning feeling sick.
AAARRRRGGGGHHHH!!!!!!! Is it the school I'm angry at? The teachers who didn't turf the kid before he got so far into the school? His current school for not making sure the kid was supervised on suspension? What about his parents?? Like Graydon hasn't had enough crap thrown his way!

OK, that's it.

Thanks for listening.

December 25, 2004 1:00 PM CST

Merry Christmas to all!

Graydon and his dad are at Sick Children's Hospital in Toronto delivering a gift to every child on the hematology/oncology floor, as well as boxes of chocolates and a range of herbal teas for the nurses and the parents' kitchen. We know how dismal it is in the hospital at Christmas, and Graydon wants to pick it up just a bit. He really is a sweetheart.

At home, Tessa and I are packing madly--we have to be at the airport at 7 a.m. tomorrow morning to go to her New York Winter Intensive dance school. Luka is enjoying Santa's best efforts.

Have a safe and happy holiday!

December 19, 2004 12:34 PM CST

SOME STUFF THAT WE HAVE LEARNED FROM OUR OWN AND OTHER CANCER PARENTS' EXPERIENCES
1) You can choose your friends, not your relatives. Regardless of what people do for a living, or make in a year, or give to charity, some will "get" it and others won't. Your brother mightn't "get" it. My mother mightn't "get" it. Caringbridge families get it because they live it.

2) Go with your first instincts on matters not medical--the little voice in you knew you should say no to babysitting twins and reserve your strength/energy for your son.

3) Do a little research on matters medical--that way you will feel informed and in a little more control of something that is basically uncontrollable.

4) Have a best friend to carp, moan and vent to--husband, friend, another parent--and give them equal time (Juli, Deb, Kelly, Shelagh, thank you). Unload frequently, don't bottle it up.

5) Say "I'm sorry, but my child--the one with CANCER--is having a bad time right now. I can't drive/bake/make that meeting/go for coffee/pick that up/take that back/ move that mountain." And then FORGIVE YOURSELF.

6) Kindness and understanding comes from the weirdest people and places. We experienced it from many people we barely knew and weren't close to at the time. Accept it and pass it on later, when you have the time and energy.

7) Cancer is--as Kristie, mum to Kendrie, put it--a suck-fest. It tries to tear your child, and you, and your family, apart. You can only let in the people who help you and add to your strength.

Caringbridge and my ALL-kids e-mail list are wonderful things. I wish I'd had both of them when Graydon was diagnosed or at any point in the last 35 months! We went it alone, with psychiatrists and therapists, but no other parents because we didn't think we could bear anyone else's sadness (we had way too much of that already). But for the shared knowledge, support and sheer vent-value, the list and this site is A-1.

A big hug to you!

Jacquelyn

December 19, 2004 11:34 PM CST

CELEBRATING GRAYDON'S ANNIVERSARY OF DIAGNOSIS, PLUS A BIG BRAG ON BEHALF OF TESSA AND GRAYDON
Graydon's three-year anniversary of diagnosis was December 17. The
Christmas timing of his dx seems to have made me deny Christmas and its
coming the last few years, with the result that the only gifts wrapped
are the ones to the kids' teachers, and I have their thank-you notes
already (save me from efficiency!!), the tree is up but has no lights
or decorations yet, and the Christmas cards--Make A Wish cards from the
Toronto chapter, which bear the artwork of MY SON GRAYDON (yes, it is a
shameless brag, but they picked G's painting of snowboarding stickmen
and a snowman and snowflakes as the card this year--check
www.makeawish.ca and click on chapters, then Toronto, then support our
chapter to see the card and the calendar, on which Graydon's art is
also the month of December, and his sister Tessa's painting is the
month of May) where was I?!?!? Oh yes, the Christmas cards with my own
kid's artwork on them are NOT EVEN WRITTEN YET.

How did Graydon celebrate his diagnosis anniversary? During his grade
six dance on Friday he was "bear-hugged" by two kids at school--grabbed
and squished--he couldn't breathe, it hurt like hell, he heard a pop
and bawled his eyes out. Vice principal was involved, etc. but he was
well enough to head to the movies right after school to celebrate
Christmas holidays, then to a friend's house for Swiss Chalet and video
games. After he got home he carried on, so this afternoon I took him to
the hospital. They were so slow I had to call Dad Alan to come relieve
me so I could take Tessa to her meeting/workshop for New York (I will
be in New York December 26 to January 1 with Tessa as she takes a
week-long "dance intensive" at the Broadway Dance Centre. Anyone from
New York reading this? I'm hoping the Broadway Dance Centre is a viable
school, and that the Holiday Inn near there isn't a terrible fleabag.
Tessa will be dancing all day and I will be reading/painting my
nails/trying not to shop and spend money all day in the room. Any
reassurances out there?? It will also be the longest I have been away
from my home, except for the hospital, in centuries. Graydon says I am
abandoning him. Push those guilt buttons, G-man).

So, Graydon has a chest xray and yes, those thugs dislocated two of his
ribs!! He is in major pain to move, cough (of course, he had suspected
whooping cough 10 days ago and a chest xray then too, so lots of
coughing), etc. and the Advil is doing nothing for him.

Monday (ah, tomorrow) is his 6 month off-treatment appointment. On the
medical side, I will try to get his oncologist to agree to a spinal. On
the nonmedical side, Graydon and I are welcomed with open arms by all
staff members because of his winning ways (screaming and crying and
cursing at every port access, sleeping off spinals for hours and
swatting unknowing nurses who tried to wake him up) and our
gifts/bribes of baking and candy-making. His NP was not joking when she
said, "Oh, your next appointment is BEFORE Christmas! And you know
why!" The top three items are flooded-icing sugar cookies just like
Martha makes--oh, the thought of holiday time without Martha--almond
roca candy, and nuts and bolts with pecans. And how much have I made
yet?? Only four dozen cookies iced so far. No candy. No nuts and bolts.

One of the few things in place are the presents that Graydon will take
to the oncology ward Dec. 25. He hated Christmas in the hospital (and
loved it in a perverse way because he made such a great haul!) that he
has gone back the last two years of his own free will and taken a gift
for every child. This year they are the coolest playing cards by a
company called Umbra, in shapes like dog bones, fish and shiny silver
flip-top cases and wild colours. He and I did the company's factory
sale for those--regular $7 to $10 apiece, and we paid $1 each--good
thing since we bought 43 of them!

That's it.

I wish I could give each and every one of you the following Christmas
gift:
-- a cleaning lady (or dude)
-- a personal assistant
-- a month's worth of The Zone meals delivered to your homes
-- a new vehicle
-- a day at the spa
-- inner peace
-- all credit cards paid in full
-- and yes, no cancer!
but I'll have to settle for cyber hugs, positive thoughts and best
wishes for safe, happy and uneventful (you know what I mean) holidays.

Much love,

Jacquelyn

December 12, 2004 11:22 PM CST

THE FALLING-OFF OF INTEREST OF FAMILY AND FRIENDS AS THE HOSPITALIZATIONS CONTINUED
We had the same experience of fall-off of interest for subsequent in-patient stays that many cancer-kids' families experience. An art director friend--Nadine, the Beauty Queen--made a beautiful mobile of photos of the three kids in the lake in healthier times, laminated them and tied them with raffia to a bleached piece of driftwood. This remained balanced on the IV pole no matter what was going in or where he was in the hospital. It was a FABULOUS conversation starter in the elevator, in the line at the Tim Hortons, wherever.

I also hung 12 colour photos in the room, hung old get well cards strung on string across the walls, and invested in a whack of those expensive mylar balloons. after the girl at the store (not in the hospital!) told me to save them and she'd only charge me a buck apiece to refill them!

When Graydon was diagnosed, his classmates and some parents and teachers made a video tape of everyone singing, saying get well, just goofing off. We took that to the hospital every time.

So as far as Graydon was concerned, he had tons of well-wishers. I brought dollar store gifts, wrapped them, and chucked one on the bed on our way out of the room, so they'd be there as a surprise. I brought new crafts everytime--which is tough for an eight-year-old boy. Oragami and beading were two highlights. Graydon memorized how to make jumping origami frogs, and gave them away to kids in the rooms and in clinic, showing the kids how to make them jump and have races!

Since we live in Toronto, Graydon's dad always brought his baby brother and big sister in for at least one visit. And Nadine the Beauty Queen visited almost everytime.

We carry on, why? because we have to! who cares if the coffee pot
boiled dry! who cares that we still have kleenex ghosts flying around
our big maple tree? Not me! Just one less thing to do next fall!

Love,

Jacquelyn

December 4, 2004

THE ROID RAGES (OR, HOW STEROIDS MADE ALAN AND I SHORT-ORDER COOKS AND OUR FAMILY VERY, VERY FRANTIC)
Graydon, in between eating meals, eating seconds, planning or shopping for what he was going to eat next, was either screaming and freaking and shrieking how he hated me, or was crying how I was the only one who loved him and wanted to hug me, lie down or sit beside me and talk until he was incoherent. And that was only the two of us, no one else. There were no touching/tickling incidents at school--he was in grade 4 and 5--thank God or that would have brought another huge mess to the house(!!).

I could never have let Graydon on stage during steroids--he was way too unpredictable. Two days before steroids I put the entire school and neighbourhood on notice that the "ROIDS" were coming for the next week! I frequently kept him home for those weeks and he drove the babysitter, My Bui, absolutely crazy. If it wasn’t for Playstation, and visits from the Dorothy Ley Hospice program, I would have had to quit my job. As it was, there was an awful lot of work that I did at home!

Steroids turn little kids into psychotic demons. Thank God it’s only for days or weeks at a time after the induction phase. And the worst thing is, every nasty thing they do is basically beyond their control--the drugs ravage their little bodies and minds and emotions. It's a terrible thing.

Every time Graydon was on the steroids, without fail, he had fitful nights filled with vivid nightmares that persisted even after he started to wake up. He talked loudly, yelped, shouted, cried, all in his sleep. He sweat through whatever he was wearing too--the record was having to change T-shirts 5 times one night. He slept in a bunk bed at home, so I usually slept in the room with him. He never got used to the steriods, day or night.

Love,

Jacquelyn

December 1, 2004

The whole concept of taking care of oneself and keeping stress levels down while one child has ALL and emotional problems, another has OCD, the toddler is watching the steroid-freak-outs-self abuse-screaming of the ALL-child and thinking "hey, this gets attention, maybe I'll try it," Mum loses her job of 16.5 years, puts on weight and stares down the black hole of depression, and the house is in such a shambles one hopes it just burns to the ground while everyone is in a family therapy session downtown--why, I just step away, have a lymph-draining massage, Vichy shower and facial, then pamper myself with a new Louis Vuitton bag.

Ha!!

Every day I thank the pharmaceuticals researchers who invented all the anti-cancer drugs our kids take as well as those who came up with SSRIs (Celexa), and anti-anxiety medication (lorazepam). I resisted medicating Mum as long as I could, but now I firmly believe that you should relieve all the stress you can during such a traumatic time.

My workout consists of running up and down stairs at home and hospital, and weight-training using laundry baskets and a three-year-old. I take antioxidants, a multivitamin and B-12 strips. I quit smoking. I brush my teeth. I listen to CourtTv to remind myself that hey, at least I have no legal worries (knock wood!).

I play on the floor with the three-year-old, lie on the bed and talk to my ALL boy, listen to extremely loud hip-hop while my OCD daughter does her choreography, and thank God my husband and I are still best friends through all this.

Now, that was a good vent! I think I'll eat an apple!

Jacquelyn

Nov. 19 2004

DIAGNOSIS AND HOW WE CAME TO BE HERE
My son Graydon was 8 years old when he was diagnosed with ALL leukemia Dec. 17, 2001. He'd had leg, back and side pain in October, and had an ultrasound. When it came back normal, I asked the pediatrician to do bloodwork, to which she replied, "Oh, we don't really do bloodwork on kids. All it'll show is leukemia, and this little guy doesn't have
leukemia." Thank God, we thought. November brought more growing pains, a lot of heavy nosebleeds and increased emotionality. In December, he fell asleep while playing Playstation--I actually found him with his hands still on the controller! Then, looking sideways at dinner one night, I noticed his always curly eyelashes were dead straight. That was a huge sign to me (yes, other people thought I was insane). I took him to the pediatrician with more back pain and weight loss and his straight eyelashes, and said I would pay for the bloodwork myself. She said that was the next step. Blood came back from the private lab, she sent us to the hospital's lab for a second set, then called him in for a one-hour physical and explained to me there was "something wonky" with his blood, that usually leukemia screamed from a blood smear, but this one didn't. Then she handed the bloodwork papers to me, said he was neutropenic, told me to take him right home and keep him there until she could get him an appointment at Sick Children's Hospital. That was Friday at 4 p.m. Our appointment at the hospital was for 8:30 a.m. Monday. By 3:00 p.m. a doctor told me "Your boy, he got cancer. But don't worry, it's the good cancer."

And so began our journey.

He was admitted right then. Our new baby, Karel Luka, had his first birthday party at the end of Graydon's bed Dec. 21, with hospital jello instead of suger-free carrot cake. We had Christmas there, and New Year's too. Graydon went into remission in two weeks, and we went home.

He missed the second half of Grade 3. I put his older sister, Tessa, into a Siblings with Cancer group at the hospital immediately. She was red-flagged for depression, and treated one-on-one in addition to the group. A couple of months in, she seemed OK. Graydon saw a psychiatrist in the oncology department. He was extremely sad and we saw little of the "trooper" in him. The doctor said that Graydon's ALL was most certainly the trigger for her depression. Wow.

Graydon had only one unscheduled admittance (for fever) during the entire 30 months. His counts bottomed out a few times, and chemo was withheld until they came up, he needed rehydration a couple of times, and had some port trouble (he swore the wire was coming out through his neck), but overall, his oncologist called his 30 months "happily uneventful." Graydon ended chemo June 24 2004, and physically he is well, except for rashs and weight gain. His six month OT anniversary will be on Christmas Eve. But he is an emotional wreck--angry, despairing, abusive, raging, histrionic. He was so special for 30 months, and I think he cannot take NOT being sick. His schoolwork is pitiful, as are his relationships with his teachers. I've been in his new school more times than I can count, but the new school and new teachers don't remember the "old" Graydon, pre-cancer. They only know the mouthy, sulky child they see every day. It's like he's on dexamethazone every day now.

So on we plough, counting all the little good things.

Love,

Jacquelyn

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