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Thursday, August 31, 2006 5:34 PM CDT

Hello hello hello to all!

And thank you for not giving up on us...!

Jessy had surgery on August 9th to remove a new tumour from his neck & 3 lyphm nodes...we waited 3 wks for pathology...bad news...we've got a bad tumour margin...residual tissues...they didn't get it all...

The surgery sight has been infected for 2 wks now & we've been back for path & consult, he's been on major antibiotics since Tuesday but no change.

If not cleared by Monday, Jess will have to have emerg surg to remove the abcess from his infected neck & a drain tube inserted.

I'm sorry I've been such a lousy friend to all but hope this finds you all well & healthy & happy.

I will update next week with or without permission.

Hugs, love & kisses to all

Chris & family :-)

Wednesday July 5, 2006 8:30 am

Hi everyone,

First & foremost, I want to thank you all for visiting & signing Jessy's page & for your continued support even though I've been unable to update as often as I can...

We finally made it to HSC on June 30th after I've had to re-schedule twice due to Jessy's very busy lifestyle & schedule again this summer...
He's just returned from the Montreal Grand Prix with his dad.

We had our consult with all involved, surgeon, oncologist, radiologist.
Jess decided to proceed with surgery to remove this new lump.
Because he's had many extensive surgeries & grafting on his neck, they will remove what they can without "disabilitating" him...

Langer wanted to book him in this week as he's leaving for 2 weeks holiday & wanted this out ASAP but Jess felt it was too soon, so surgery date is now August 9th.

Summer is finally here & Alexis had a wonderful grade 8 graduation!
We are sooooooo proud of her hard work & achivements this year!
She received the first & highest award at her school " Most Improved Student Of The Year" !!!!!
Way to go girl!

I hope this finds you & yours all well & enjoying summer with loved ones.

Thank you all again so very much for keeping us in your thoughts & for all your kind & encouraging words.

I will update as permitted by Master J...

Hugs & peace,

Chris

Sunday, April 2, 2006 11:57 AM CDT

Greetings everyone, & Leslie & Tracy, here it is...lol

THE UDPTATE!!!

March was beyond crazy, job hunting, legal & financial matters...non stop!

With great shock & regret, we found my father in law deceased last Sunday @ his home.
It was a very difficult week, and we will need much time to grieve. He was an incredible guy, the father I never had. Jessy is devastated, they were very close and we found out the day he passed, that he had just been diagnosed with colon cancer and told no one...

Jessy is well & going to school, we return for a FU & CT June 6th, can't even go there right now.

And that's about all she wrote right now !

Hope this finds you all well.

Take good care.

Hugs & Peace,

Chris

Thursday, March 2, 2006 6:43 AM CST

Hi everyone!

Sorry to worry you all with a much delayed update!

I won't name any names but a certain SOMEONE crashed my PC again...ARGH!...sigh...

I managed to get my business laptop up & going so I can @ least get online until my beast is fixed, yet AGAIN!

I have no word to describe our appointment last Friday.
Good, bad,long, upsetting, maddning, frustrating & BIZZARE!

Sure enough Krista (J-Man's app. co-ordinator) called us with a CT scan & a consult with Grant after our Surg FU with Langer...TOLD YA SO! LOL

I can't go into any details, but let's just say that Dr Langer desperately needs a holiday...hope all is well in his life because the man we met with last Friday was NOT himself & I feel somewhat guilty now for my lack of patience...Bad appointment!

On the other hand, Grant took the time to go CT & review the scan with the Radiology Docs & Techs as soon as it was finished so that he could sit down and discuss it with us & hopefully Langer right away.
No "go home, we'll call" sit and wait for a week sitting on pins & needles for results.
Langer didn't show...

Bottom line, no growth on the lung lesions since January scan, belly nodes are still uncertain but unchanged therefore Jessy is no longer eligible for the Wiltop Topotecan protocol & his name (last candidate)has been removed from the clinical study list from St Judes.
Consistant growth must be seen to qualify...

Jessy will be eligible for 2 new canadian drugs on clinical trial(pills / outpatient)that are non-chemo & are now used & available from the US thru PMH.
Will give names & more info on those when I've done some research...Good appointment!

So for the time beeing, Jessy & Grant have chosen, agreed & decided to do regular 3 mth maintenance follow ups and monitor the situation.

Everything else is much the same, PC problems & still looking for work! LOL

Now that I'm up & running again, I'll do my best to do a little bit of catch up with all of you!

Hugs & Peace,

Chris

Thursday, February 16, 2006 7:21 AM CST

Hi everyone,

Sorry for the long delay, I guess we all needed some time out.

I've felt much separation anxiety since missing our January 31st HSC clinic appointment.

Been trying to keep myself busy & occupied & the kids have taken care of that! lol

We've had a busy 2 weeks, between some good company (Sharon & Bruce) & a spur of the moment trip to visit the family in the Ottawa region.

After a few snow days, we were all going nuts and felt completely cabined.
So, I decided to pack up the kids & take off last Thursday.

Friday the 10th happened to be Jessy's BIG 17th B-Day so my mom decided to throw a big surprise bash.

She invited the ENTIRE family (50 ) & we all celebrated Alexis & Jessy's B-Days & Xmas together for the first time in years! It was awesome!
I haven't seen my kids this happy in a long time...
It was the best B-Day gift & Xmas gift I could give them...& me.

We came back Monday for Jessy's first Drivers Ed class and it's been non stop since.
Jessy is off to Quebec with his dad this morning for a weekend of skiing Mont Tremblant.
Yearly B-Day present from dad along with an amp for his base guitar...

He's gonna be a famous rock star & spoil me he promised for all the "kill your parents" & head banging music he will produce with his buddies & I will endure from my basement & garage! LOL

It will be a very busy next few weeks & our next appointment is on February 24th with Dr Langer for surg follow up & GI follow up. I got a feeling Dr Grant will show for a scan consult...Haem/Onc clinic has been informed we will be in the hospital that day & so has Jessy's nurse Glynnis.

We shall see...

Hope this finds you all well, healthy & happy!

Hugs & Peace,

Chris :-)

Thursday, January 26, 2006 2:27 PM CST

Well folks,

This will be by far my most selfish and angry update...

I apologize in advance...and for the typos!

The verdict:
"We" are still declining treatment once and for all, "we" will not even attempt to try the 1 yr without commitment protocol for 2 rounds ( 2 x 10 days in-patient chemo ) to see if there are "changes"...ANYTHING!?

I'm calling Glynnis ( his nurse ) tomorrow to inform her that Jess only wants to know the outcome of the many scan reviews ( old or new stuff ) and to do 3 mth follow ups to see disease progress and to be refered to palliative care unit.

I understand his anger, but he's come so far, the more we talk about it, the angrier he gets...

Hypothetically, if he started the protocol January of last yr, when the spots were first found, the protocol would have been finished by now...no matter of the outcome...

Now, weather or not he did treatment, I am more or less looking at another yr of putting my family & my life on hold and I cannot afford this emotionally or financially...

So, I am hoping he is well for a few months, I am agressively looking for work while I can as my EI runs out Feb 28/06...court will take months yet, our justice system SUCKS!

I hope this finds you all well & healthy.

Hugs & Peace,

Chris

Tuesday, January 17, 2006 7:30 PM CST

Evening folks,

I'm lost for words and totally beside myself and upset and mad as hell...

Dr Bergen from our local hospital didn't really want to discuss the CT Scan results with me from our 5 day stay here in Orangeville last week.

I didn't like that at all but he said he would send it to Langer @ Sick Kids as he knew Jessy's case very well would be able to compare pre & post surgery Scans.

He seemed concerned and I had a bad feeling...

Sure enough, when we showed up @ HSC for our follow up today, Grant immediatly sent us to CT Scan.

They found a spot on Jessy's left lung again, 2 cm in diameter and possibly abdominal nodes...

How could this be?!
They just tore his lungs apart a month ago!?
Is this new or was it missed?!

We meet again with Langer & Grant in 2 weeks after the Scans have been review by the Radiologists & Surgeon & Oncologist...Jessy has those 2 weeks to decide if he will do the TOPOTECAN experimental Study Protocol...

Poor kid, after all he's just been thru, I can't believe it...NOT FAIR!

I'm too upset & tired to think anymore tonight, I'll update again when I can.

Hugs & Peace,

Chris

PS: If I ever win the lottery, I will dedicate myself to openeing a charitable organization to provide parents/caregivers with 100f their annual income to maintain their lives & families & assets & care for as long as needed while providing care for a loved one!...as if we didn't have enough to worry about, facing the loss of a loved one and bancrupcy in the process is just too much for a family to bare...
SANITY!

Tuesday, January 10, 2006 7:43 AM CST

Good morning,

Well, I'm almost affraid to update as each time I do, I seem to JINX myself!!

My last update was last Thursday morning and we ended up in emerg on Thursday night!

After a 5 day stay @ our local hospital, we're home again.

Jessy is having major GI problems AGAIN and a CT scan on Saturday revealed an obstruction in the lower bowel and we almost ended up @ HSC on Sunday for surgery.

Luckily, the G tube they inserted for 24 hrs did the job in partially relieving the obstruction and after being NPO for 5 days, Jess was able to tolerate small amounts of fluids & food.

Dr Bergen from our local hospital is transferring all the info to Langer & Grant for a follow up @ Sick Kids ASAP.

Ironically enough, Grant called yesterday and left a message to get us in for a regular clinic follow up & to book a regular post op CT scan!
Little does he know he's about to get all the info & updates on his desk today!

I left a message with Glynnis last night and expect a call today.

Will update soon.

Hope this finds you all well!

Peace & Hugs,

Chris

Wednesday, January 4, 2006 9:46 AM CST

Hi everyone!

HAPPY NEW YEAR!!!

...& apologies once again for the much delayed update...

We had company over for a week & finally got our main PC back & running properly.

We've been trying to stop spining, unwind & catch up on sleep...
Been a very slow process!

Jessy is recovering slowly but nicely considering he's only 3 weeks post up.
He's had the energy to go out 3 times, once to visit his dad & twice to see Amanda, his new girl friend. We finally took the last of his dressings and bandages off yesterday.

He's been on morphine for 3 weeks now and is concerned about it being it decreased until eliminated as he still feels lots of discomfort.
I'm a bit concerned at this time as he still refuses to go beyound the 4 hr mark to take it.
Had to hide the bottle yesterday and he told me to hang on to it so I could start stretching his doses...
It's highly addictive and he gets a bit short fused without them...

We're due back in clinic next week, most likely Tuesday to discuss pathology with Langer & Grant and for Jessy to "be cornered again" as he calls it into doing experimental chemo...sigh...

I thank you all so much for the support, cards, visits, kind words, calls, emails, postings, thoughts, hugs, prayers, Tim Horton's certificates!!!

Wishing you all a very HEALTHY & Succesful 2006!

Hugs & Peace,

Chris

Sunday, December 25, 2005 9:19 AM CST

Greetings!

We made it home!
We're home for Xmas!

Sorry for the late update, no PC access @ HSC & sick PC @ home...plus...totally SPENT!

MERRY CHRISTMAS TO ALL, FROM OUR HOME TO YOURS!!

Thank you for the special Angel Dust guys...

Hugs & Peace,

Chris :-)

Wednesday, December 21, 2005 7:35 PM CST

...sigh...

Jessy developed a low grade fever yesterday evening even though he's been on Tylenol every 6 hrs for the past 10 days and there is now crackling from his right lung due to imobility...

Dr Grant came to see us yesterday with pathology report.
Dr Langer had removed a spot during surgery from Jessy's chest wall. Turned out to be a lymph node that tested positive for Wilms...

My baby girl called tonight in tears, she's lonely and misses us and said home just doesn't feel like home anymore without us...

I just broke down and hope to God tomorrow is a better one as we refuse on giving up hope of being home for Christmas.


G'nite all.

Hugs & Peace,

Chris

Tuesday, December 20, 2005 1:29 PM CST

Hello everyone!

First of all, thank you all so much for your support and postings.

I apologize for the lack of updates but the library with internet access closed down last weekend for the Holidays till January 4th!

I was lucky enough to find & borrow a laptop from Child Life so that I could post a quick update.

We've had a bit of a recovery setback...
Jessy was back in surgery yesterday afternoon for the insertion of another chest tube. His 1st chest tube on the bottom side wasn't doing the job and we had a leak so they've inserted a second one on the front of his chest for the top portion of his lung.
Needless to say, he's not a happy camper as this will extend our stay...sigh...

He's been having problems with his left side all along and now they can't even do a temporary water seal for him to take a stroll & stretch with both suctions going on full time @ max. Therefore, he's imobile & stuck in his room and going stir crazy!

We're not giving up hope to be home for Xmas and are trying to keep a positive outlook and make the best of the situation.

I hope thi
s finds you all well and that my next posting is a more positive one.

Take good care everyone,

Hugs & Peace,

Chris

Saturday, December 17, 2005 10:33 AM CST

Greeting from the great white north!

I finally made it home last night...home sweet home...
Hate to leave him...sigh...
Did my grocery shopping, the laundry but most important, got to spend time with Alexis & Brent.

Emptied the hot water tank taking a more than needed long hot shower and soaked in a bath till I looked like a prune. Much needed for my old aching body.
Always in a hurry @ the hospital as people are in and out of our room constantly...

I'm heading back at some point today but waiting on a call from Jess as he is expecting his dad & company to visit today so I will wait till after. Really not in the mood to run into him as I am not responsible of my actions at this point! LOL

Hope this finds you all well & will update again soon.

Hugs,
Chris :-)

Friday, December 16, 2005 9:10 AM CST

Greetings,

We finally got a private room late last night!
Hurray! Yahoo! Yippy!

Finally got some sleep and a loooooooong hot shower!

Jess is doing really well despite the pain without the epidural. His left side still being the main issue as they had to start suction again on his chest tube.
They did another CRX this morning & plan to stop his drain again around noon today if all looks good till dinner at which time they will X ray again and re-assess to see if suction has to be strated again.
Got a feeling this may go on for a few more days...

He's been sitting up for meals and we've been going for strolls but he's been having problems with breathing & coughing without the back anasthetic.

I'm home bound later on today for an overnight.
Alexis is missing us a lot and I need to shop and get us some clean laundry.

Well, so much for "THE" snow storm!?
We didn't get nearly what was expected...no complaints here!

Well that's all for now, promise to return quickly with Master J-Man's ice cream sandwich!

Hope everyone is having a great Friday!

Hugs,
Chris :-)

Thursday, December 15, 2005 8:43 AM CST

Good morning,

Well, we've kept the anesthesia team busy the last 3 days!
Jessy had a very busy but pretty good day considering.
He did very well with his breathing & coughing exercises, he was up for a stroll and sitting up to inhale his Whopper!

They stopped suction on his right chest tube and after doing an CXR last night, were able to remove it completely. The left side is still giving him a lot of pain & problems.
It's still draining quite a bit and they can't remove both tubes in case of lung collapse & fluid build up which seems to be happening. We are awaiting yet another CXR this morning to see what his lungs look like...

They finally had to remove Jessy's epidural catheter yesterday instead of today and after all the moving he did, he was in much pain last night with no more back anesthetic.

He's been put on a PAC but they haven't been able to come up with the right combination of drugs to keep him comfortable yet and today, he's taken a few step back from recovery road as he's unable to move from the pain.
I doubt he will co-operate with physio today if they can't come up with something to keep him somewhat comfortable.

On a positive note, he was QUITE happy to get his P catheter out this morning! LOL...

Doesn't look like he'll get into a private room anytime soon. They're all double booked and have quite a few kids coming out of surgery today who have absolutely no place to go!
Of couse, Jessy volunteered his bed as he said he was ready to go home with is pump!Funny guy...sigh.
I slept on a chair beside him last night as all the parent rooms & both CCU & Surgical Waiting rooms were filled to the max.

My plan to go home tonight is on hold due to the anticipated snow storm. I really don't want to leave but I need a proper shower & a decent bed to sleep in before I lose it and go "postal"! LOL

I have been unsuccessful in finding an after hour solution to a PC access for posting updates and emails. The library is only open from 9:30am to 5pm which is really frustrating.

That's all for now folks, will try to post again later this aft.

Hope this finds you all well.

Hugs,
Chris

Wednesday, December 14, 2005 9:16 AM CST

Hi everyone,

I must find a better way to be able to get PC access other then the Library as it is only open from 8:30 am to 5 pm...

Well, we had the Epidural situation under control for about 24 hrs and Jess was doing so well with the breathing & coughing that he convinced the Docs to move us from ICU to Constant Care. But, it's been acting up again all morning...
The catheter is just too small and we keep having problems with pressure & flow.

So, they will keep it in till tomorrow as planned but will only use it for the numbness meds and will start giving him his pain meds orally & via IV.

We're waiting on a chest XR & physio to come early this aft as Jess wants up and out of bed today instead of tomorrow.
He's motivated & anxious to get into a private room and have some peace & quiet and I can't blame him!
I've been sleeping in Surgical & CCU waiting rooms, cleaning up in whatever rest room is available and living out of my car!

I won't go home for a break until he is settled into his own room and comfy. I'm hoping to go home tomorrow evening to overnight with Alexis & come back Friday morning for the weekend.

Thank you very much Tracy for the Tim Horton's gift certificates, can't think of a better & more useful gift to get at HSC! You're such a sweetheart! :-)

Thank you very much Laura for the visit & the lottery tickets for Jess! He's in mental anguish,torture & agony to have to stare at all those "scratch & win" tickets and not be able to move his arms and hands to scratch them &
I had to swear to him that I wouldn't touch them!LOL
Think my lad is developping an addiction or gambling problem...(must be the Greek in him!) certainly not the French part! No Way, Never Never...LOL

Thank you all for the positive & encouraging postings!
They keep us kicking & screaming... so to speak ;-)


That's it for now but will update again soon.

Hugs,

Chris & Jess

Tuesday, December 13, 2005 10:19 AM CST

Good morning everyone,

Just a brief update to let you all know that surgery went very well yesterday and Dr Langer was successful in removing all the tumors in both of Jessy's lungs in addition to a small lump he found that was touching the wall of his chest.

We've been having major issues with Jessy's Epidural & blood pressure since last night, why I'm so late updating...

Despite all that, he's been doing remarkebly well.
He's been off the respirator & feeding tube since yesterday!!!
He's been awake & sitting up quite a bit when his Epidural is working properly, which we are still woking on solving. If they have to remove it, he will be intubated again and put back on the respirator which no one wants!

His chest tubes are really starting to annoy him but the little bugger finally stopped fighting the oxygen mask and feels better. He will be starting breathing and coughing exercises tomorrow, hopefully, and may be transfered to Constant Care Unit if well enough.

Gotta run back up, but will try posting later on today.

THANK YOU ALL VERY MUCH FOR YOUR ONGOING SUPPORT & KINDNESS & CARING & TOUGHTS & PRAYERS!!!

HUGS,
Chris

Tuesday, December 6, 2005 3:42 PM CST

Greetings everyone,

Sorry for the delayed update, came back too pooped and too stunned and too late and too traffic road-raged to update last night...

Very long consult with Anesthesia team yesterday, info overload & overwhelming.
Jess was refered to his usual "sleep" Doc (another Dr Grant who's put him to sleep many times before)& her colleage who Jessy knows very well also.

After reviewing all of his latest tests, Jessy will have bi-lateral lung surgery, 10 metz to be removed.

Prior to surgery, Jess will have a middle back epidural that he will keep for 4-6 days while in ICU.
This is for pain management as well as recovery speed.
It will be too painful for Jess to breath without it, and he needs to breath and cough to prevent fluid build up, pneumonia or lung collapse.
Morphine alone would not do it and it also slows down the breathing.

He'll be on a respirator, a catheter & intubated after surgery, he's PO about that! So much so that he made his surgeon sign a "no visitor" privacy form!

They had originally reserved 6 hrs of OR time but have changed it to 8 as they need to check a few bumps in his neck and also want to check his throat...

We'll be staying downtown Sunday night, have a nice dinner & an early night. As per his request, Jess & I will check in @ HSC Monday 6am & Brent & Al will do breakfast and a few "downtown" things after checkout time at the hotel and check up on us every couple of hours.

Jessy will bring his dad up to speed on the situation sometime this week as he has just retuned from vacationing in St Thomas and has no clue has to what's been going on.

As far as the verdict on the lenght of our stay...
optomistically 7 days
likely 10 days
realistically 14 days...

Have to get organized and packed this week!

I'm sure I'm forgetting a whole bunch of stuff but I would say that it's enough info for one night...
wouldn't you???????
LOL

Hugs & Peace

Chris
PS: We need some of our special Angel Dust!

Monday, November 28, 2005 11:47 AM CST

Happy Monday everyone!

Sorry for the late update but an anomymous kid in my household crashed my PC last week and I finally got it back & running late last night.
Almost went "postal" without it for a week!
LOL

Got a call from Langer's office last week to schedule all J-Man's appt's.
U/S on Friday, Dec 02.
Respiratory Med for Pulmonary Function & Anesthesia Consult(the test that will decide if Jess get's 1 lung done at a time in 2 surgeries or both at once) on Monday Dec 05.
Surgery, Monday Dec 12.

He's scared, I'm scared...

The Holidays @ Casa Chris this year will be very quiet & subdued due to Jessy's recovery.

I had a very sucessful interview this morning with a great company close by.
Not very good pay, which was ok with me if the commute had remained reasonable as far as time, gas & maintenance.
They were willing for me to start in January (which was perfect with Jessy's surgery time!) and have me on call for help in between if I was available!
BUT, the reason why they were willing to wait for me till January is that they are moving north 1 hour away during their Xmas Holiday shutdown...sigh...I must be cursed...

I have another interview tomorrow @ 2:30, hard to go apply for a job when you need so much time off even before you begin!

Needless to say, it's been crazy (as usual) and I'm glad to get my PC back!

Hope all is well with everyone, will visit and post soon!

Take good care.

Hugs,
Chris :-)

Thursday, November 10, 2005 6:32 AM CST

We had a better day than we thought @ Sick Kids, thank God some good news for a change...!
Jessy's surgeon is confident that he is fit for surgery, although very extensive & drastic but it will buy him more time (the quality one without chemo) and it was Jessy's decision, as always, in the end.

Although Jessy gave him an answer, Dr Langer recommended we go home and discuss it as a family before making a final decision.
Therefore, I have suggested to Jessy to contact his dad and see him to bring him up to speed on his current health situation & plans.

As mentioned before, surgery will be very extensive, they will cut about 6 inches each side, from front to back, under both ribs to get to his lungs and will remove 10+ tumours between both sides. Jessy will need a minimum off 2 weeks in bed recovery time after hospital stay.

Needless to say, they want to proceed ASAP as the disease is progressing. They will also require many test prior to surgery, I will inform you as we go along, and also mentioned that they may have to do surgery in 2 parts, one lung at a time, if Jessy's left diaphragm is not well enough. He had nerve grafting in that area in 2001 and has left him with lesser lung capacities.

Christmas is around the corner and Jessy feels this should be dealt with prior to so he can have an enjoyable Holiday time.
I could not agree more, best way to start the New Year.
Needless to say, we will have many upcoming appointments @ HSC which cripples me again for my employment search...sigh...

Oh well, we're too happy to care about that right now!
AND, Alexis is 13 TODAY!
Happy B-Day babygirl!!!!

Thank you all for your continued and ongoing support!
We'll keep up posted.

Hugs,
Chris :-)

Saturday, November 5, 2005 8:29 AM CST

Happy Saturday everyone!

We have been getting such nice weather, it's hard to believe it's November!

So much, yet so little has happened lately & time has flown by in many way but has also stood by in many other ways...

Since April, I've applied for 75+ positions, of which I had about 10 call backs and 2 interviews.
Bottom line is there are so many others more educated,
1/2 my age, willing to work twice as much for half as much, nights, weekends, overtime, travel...
My family priorities come first, which is also seen as a strike against me...

I'm in court all day Monday with Alexis & Jessy's dad.
Me & him, our lawyers and the childrens lawyer.
First time in 7 mths, the day he fired me, I will have to face him. I've endured him for 20 yrs, how much longer must I have to!!!???

Jess & I are off to Sick Kids Tuesday for our surg consult with Grant & Langer.

Alexis has a B-Day Thursday, my last baby will turn 13...!

I wanted to tell you all that I may not sign your guestbooks often but I visit daily, 5 am, coffee in hand!
And I thank you all for your kind and encouraging postings, they keep me going and go a long way!

Will update mid week after we have some answers.

Take good care...

Hugs, Chris

Wednesday, October 26, 2005 2:36 PM CDT

Hi everyone,

Finally an update!!!
Got a call from Dr Langer's office today for surg consult and our meeting with him and Grant.

We go in November 8th @ 1:30.
They've had 1 month to review and analyze the scan...

Hope there's a way!

Will keep you posted.

Hugs,
Chris

Tuesday, October 11, 2005 3:17 PM CDT

Hi everyone,

Jess got "scolded" by Glynnis & Dr Grant when he finally decided to return their call last Thursday.

He's been playing hooky with them all summer. Last lung scan 3 wks ago showed growth again, of course...

He wont do chemo, still, so he refered Jess back to his surgeon Dr Langer.
J-Man panicked at the thought of not having Dr Grant & follow ups in heam/onc clinic.

Grant agreed to meet with us and Langer to discuss options & possibilities but they are futile without the Wiltop protocol...

Miss my HSC rat pack & our RT!
Miss my Tubby girl & shadow...

Hugs,

Chris

Wednesday, October 5, 2005 6:20 AM CDT

Hi everyone...

It's with great sadness and a very heavy heart that I update the journal this morning.

We had to say goodbye to our beloved family pet and Jessy's best friend Trouble...
Jess and I were by her side till the end.
She got her wings at 11:50am yesterday at the age of 12.

J-Man always called her his Guardian Angel send from above.
We adopted Tubby from the pound over 10 yrs ago when Jessy was first diagnosed. He saw her picture posted at a local coffee shop while we were out for a country drive one day and just had to have her.
Sad to say but my son does not remember life without Tubby or cancer...

She had been abused as a puppy and abandoned at the vet due to a broken leg the owners couldn't afford to pay for.

Being what she was, the adoption was conditionnal upon having her spayed & having the steel pin surgically removed from her leg.

Trouble was a pure white Pitt Bull like the one in the movie Homeward Bound. She was gorgeous, unique, fun, sweet, loyal, devoted, kind, sensitive, thoughtful, she was our baby girl.

She knew when something was wrong around here and would become your shadow, looking out for you. She was human...

She had been stuggling a nasty skin condition for yrs and recently developped what Dr Hooper thinks was a tumour on her shoulder that eventually led to her losing the use of her leg all together. She had to be carried around and weight 75 lbs.

Jess & I discussed it over the weekend and took her to the vet on Monday. The decision was made by Jessy after talking for quite a while with Dr Hooper whom Tubby loved dearly.
How many dogs do you know that LOVED going to the vet!?
She did! She was in the care of Dr Hooper ever since she was a pup and loved going there.

We made our last day with her memorable. We gave her a long hot bubble bath with a massage. We had a big party for her Monday night, T-Bone dinner with all the trimmings, an ice cold beer, cake and many rolls of film. She was a happy camper. She played musical bed and slept in all our rooms, got much love & cuddles & attention & finally settled by my side as she always did.

So many memories of her around here, this place feels empty & will never be the same without faithful Trouble.
She took her favorite blanky with her.

She will always be fondly remembered, greatly missed, irreplaceble and part of this family. She will be cremated and her ashes returned to us.

Needless to say, Jess re-scheduled his Tuesday appointment @ HSC. We'll have a conference call today with Dr Grant and go over the CT results from last Thursday.

Rest in peace my beauty girl and thank you for looking out for us for all these years. We will never forget you!
We love you brave girl.

Hugs,

Chris :-(

Thursday, September 29, 2005 6:11 AM CDT

Greetings,

We had a very long case conference with Dr Grant (oncologist), Dr Langer (surgeon), Eleonor (nurse practitioner), Glynnis (nurse) Krista ( app. co-ordinator), Sonia (social worker), Dr De Souza (shrink)...

I guess it was a very hard reality check for Jessy after playing hooky all summer...

Time is ticking fast for Jess and Dr Grant got all choked up and had a real heart to heart with him.
He said he found it real hard emotionally to deal with teenagers & death because they know & feel so much.

He put all the cards on the table again for Jess and asked him to make a very hard decision, again...

1) CT Scan ASAP to see where we are at
2) They want Jess to start the Wiltop protocol to see if he gets Tumor/lession response.
3) Upon review of that & CT, Langer decides if surgery is at all possible & safe.

I'm proud to say that Jess is taking baby steps and agreed to do a CT, which he HATES!

Krista worked her magic again and got us in in a jiffy.
We're off for a 10:30 am CT @ HSC today and we have another meeting to review the findings with Grant next Tuesday.

Dr Grant said that Jessy's case was presented @ the International Wilms Tumor Conference in BC and that a few more study drugs are available for him.

...little bites...

Have a great day everyone.

Hugs,

Chris

UPDATE: Sept29/05 4:30

Have just returned from HSC.
Long wait, huge back up as 1 0f the 2 CT's was broken.
Now we wait till Tuesday for next visit & meeting with Grant.

Wishing you all a happy & safe weekend!

Hugs,

Chris

Monday, September 26, 2005 5:51 AM CDT

Good morning everyone & Happy Monday (riiiiight)!
I know, I know...Been a while...

Alexis came back from riding camp with a cold which she passed on to me. I guess I was so run down that mine turned into a full fledge flu with sinus infection, strep, bronchitis, laryngitis & ear infection.
Lost my voice for over a week & the kids weren't complaining! LOL
Ended up @ the hospital for hydration, antibiotics and in bed for 2 wks!
I also have just returned from a mini holiday...
5 days in New Brunswick & Nova Scotia visiting good friends. They bought the tickets for my B-Day & treated me to an East Coast visit. Boy did I need that!
THANK YOU guys!

Got a call from Glynnis last week. Dr Grant was in BC all last week for an international Wilms tumor convention &
Jessy's case was to be presented.
We go to HSC tomorrow to meet with him and discuss all the options again.

Wish they found a cure!

Hope this finds you all well & will keep you posted.

Take good care & thank you for the much appreciated support from all.

Hugs,

Chris

Thursday, September 8, 2005 7:24 AM CDT

Been very bad with updates...APOLOGIES!
Felt totally lost without the munchkins here.
Both are back and glad to be.

Well, it's both...Wilms and Carcinoma. Final pathology...
Had a long talk with Ron Grant...
They (Grant & Langer) want to have a meeting with us and convince Jess to go for surg again...and chemo.
Wiltop protocol still the only option.
Surgery...maybe...chemo, VERY unlikely...he won't change his mind.
And I can't blame him. He looks and feels fantatsic!

I will post again soon, I promise.

I also promise to visit all of you and sign your guestbook.

Thank you all.

Hugs,

Chris

Saturday, August 27, 2005 7:31 AM CDT

Hello eveyone,

I have called the hospital twice and finally got a call back from Glynnis.
Preliminary report shows that it's like the cells they found in his neck.
Not Wilms but "a" type of Carcinoma, his secondary cancer caused by treatment.
Dr Grant was to have a power meeting with the Onc team on Thursday to have final report on which type of Carcinoma and get back to me but I still haven't heard...
There still signs of Wilms & Carcinoma in his neck as well.

Meanwhile, Jessy is still in Montreal visiting.
He's in no hurray to get back and I'm glad he's relaxing and having a good time with family & new friends.
Princess Alexis gets picked up from riding camp after a 2 week stay this afternoon.

Not much else to report, been quiet in some ways without the kiddies here.

Hope you all have a GREAT weekend!

Thank you all so very much for the ongoing support...

Hugs,
Chris

Wednesday, August 17, 2005 7:39 AM CDT

Hello everyone,

Once again, sorry for the late update.

Jessy had his biopsy done on Friday without any complications.
They took 4 good samples.
Pathology awaits...

I was fortunate enough to have a very good g/f of mine, Laura (mom & organizer of Mitchell Fraser Memorial Slo Pitch Tournament pictured above) come and visit to keep us company in the evening.
Jessy was starving as he had been NPO since the night before and was craving a steak. She was kind enough to treat us to a fantastic steak dinner @ The Keg Mansion!
She's so sweet & generous and Jessy thinks she's very KEWL!
LOL

Dropped Jessy off to the train station Sunday morning for a trip to Montreal to visit his uncle Joey (my kid brother). He hasn't decided how long he will stay.
He wanted to get away from his controlling father but can't find the nerve to stand up to him.
He also wanted to get away from all this nasty court battle bewteen his dad and I...don't blame the kid...
It's getting really ugly...

Miss Alexis got dropped off @ riding camp for 2 weeks on Sunday afternoon as well.
She was so excited & looking forward to it.
Can't believe summer is almost done!


I hope you're all doing fine and having a good week.

Take good care.

Hugs,
Chris

Friday, August 12, 2005 6:52 AM CDT

Hello everyone and thank you for checking up on us,

Sorry for the delayed update.
We went to Sick Kids on Monday for Jessy's lung ultrasound.
I was surprise to find it was done in the OR by a surgeon.
We were supposed to have a different surgeon but when Dr Chait saw Jessy's chart in Radiology, he took it and switch patients! Dr Chait is the one who did Jessy's 1st kidney and belly biopsies almost 11 yrs ago when he was diagnosed. He remembered the last name (who the heck wouldn't! LOL)and us and wanted to take care of it.
Was very nice of him, he's a supper guy, very funny...AND handsome...My own lad said that!LOL

1 1/2 hrs into the mapping US, 2 Docs, myself and 3 nurses could not find the large spot that was to be biopsied today...!

We were sent for bloodwork as usual before any general and ask to return in 1 hr for an OR CT Scan.
We went for a long leisurely lunch on a patio, absorbed the sun, chatted, relaxed.. and enjoyed and hoped a miracle had happened....no spots!
We went back and the team and I gathered again in the OR for the CT.

I can't tell you how it feels after all these yrs to be in the OR and see WHAT they see WHEN they see it.
Usually have to peek thru a window and watch for facial expressions or wait for the surgeon to come out and see you or wait for a call for results...
Well, in slow motion BANG! Loud and clear there they all were. Spots EVERYWHERE!
I just hugged him...

Off we are today for "the" biopsy, left lung, biggest spot.
They want him to overnight but as I was telling my HSC Rat Pack g/f earlier, if I know my brat well enough, he'll be kicking and screaming to get out as soon as he comes to!LOL

Will let you all know how it went tomorrow...

Hugs,
Chris

Friday, August 5, 2005 6:52 AM CDT

Hi everyone,

Well, we never made it to Sick Kids on Wednesday as Jessy never got the messages about his appointment and when he was given the option of returning to work with his dad or staying on holiday, he picked the obvious, staying in Kingston.

Alexis was returned home on Wednesday morning and that's when Jessy called and found out about the appointment...
sigh...

I called the hospital to re-schudule but have not heard back from them yet.

Been a very busy week putting out fires all over the place.

Hope you're all having a good one.

Take good care & thank you for stopping by.

Hugs,

Chris


UPDATE: Friday 9:30 am

Jessy's appointment co-ordinator just called. She's re-booked the ultasound for Monday & the biopsy will be done Friday. WOW...efficient girl she is that one.

Have a great weekend everyone!

Chris

Wednesday, July 27, 2005 8:37 AM CDT

Hi everyone,

First of all, thank you all for coming by which means so much to us that so many people are thinking of us.

Got a late call from Jessy in Kingston on Monday night.
His dad finally agreed to leave really early and drop him off at the hospital on his way to work.
So I left here @ 7am and was there waiting for him @ 9am, registration papers & cards in hand in the CT/US dpt.

He arrived @ 9:30 and I can't tell you how good it felt to see him walking down the hall towards me.

Was a long & busy day, we got to review some of the scan pics from his lungs and compared all 3, January, April & now. Was amazing to see the difference.
Spreading and growing as expected.

We will wait and get the full report by the radiologist, hopefully by Friday, and hope to God that his neck is not too bad and that nothing else shows up.
Dr Grant is concerned about the path of his disease and mentioned his tyroid and liver again...
Cross my fingers, toes, eyes.

We were sitting in CT waiting room after J-Man did the oral contrast but who walks in?...Tracy & Christopher!
They have a Caringbridge page as well and attend HSC.
They even have Dr Grant as an Onc.!
It was kewl to finally meet in person and Jess loves kids and got a real perk from Christopher.
Me? I was in a daze!! Sorry Tracy! LOL
Anyways, you should all visit these great folks and support them: www.caringbridge.org/canada/christophersstory

Jessy ended up calling his dad and telling him not to bother picking him up from the hospital as he wanted to come "home" with me for the night. Dad got mad but Jess stood his ground. He was told to be ready for work at 8 am today and just got picked up, his dad lives 10 mins away from me, just out of town.

We didn't have any big discussions, no major questions, careful with each other, just rode the waves, chit chatted, emotional but carefull & quiet day at once.
Dr Grant even commented on it...Seemed the entire floor new Jess had left. That's when you know you have been doing this for WAY too long and know WAY too many people! LOL

I'm just glad overall that yesterday what a pretty good day considering all, uncomfortable at times, but an ok day.

I'm glad we got to hang out @ home together, he enjoyed his home cooked meal & bed & dog. I just enjoyed having him around and watching him go about.
Love that Darn kid!

Happy Day & Hugs :-)


Chris

UPDATE SUNDAY JULY 31, 2005

Krista (Jessy's appointment co-ordinator) called late Friday afternoon. Jess has a "mapping" ultrasound on Wednesday for his up coming lung biopsy...
I've not been able to speak to him but emailed and send messages via and thru his sister & uncle Joey (my baby brother & where Alexis spent the past week).
I hope to God & pray he shows...
It was his decision after the scan & talk with Dr Grant & me to go ahead with it...

Mean time, Alexis has been re-united with Jessy @ dad's g/f on Friday as she was promised a weekend shopping spree for her 2 upcoming weeks @ riding camp, so I have no clue when she's coming back home.

The days & nights are long & hard.

Hope you're all enjoying the long weekend.

Hugs,

Chris

Monday, July 25, 2005 6:59 PM CDT

Greetings...

Well, J-Man was to show today for his hospital appointments tomorrow but he has not shown.

When he last left a message for me on Saturday, his dad made him choose, again...Hospital with me or work!

Since Jess won't go to the hospital with anyone but me alone, he will skip this VERY important day...ARGH!

I guess I don't need to worry about an early morning, that nasty rush hour traffic to the city with an X-Large Timmy's looking forward to those long waits for bad news...
...trying to make myself feel better but it's not working...sigh...

I guess I was looking forward to an evening with him after a month...

Nite all,

Hugs
Chris

Wednesday, July 20, 2005 12:53 PM

Hello everyone,

Well last night Alexis got picked up by her dad for the first time in 3 weeks as she's not wanted to visit with him much lately and he's not really made any attemps to call and check up on her.
She is upset about the situation and enjoyed having me to herself.
Little did I know that Jessy got dropped off in town @ a friends place for the evening when Alexis got picked up.

Last night was my 1st night alone without anyone around but my stinky Pitt Bull as Brent was out for the evening as well.
Soaked in a hot bath, had a glass of Vino...chilled...
My doorbell rang @ 9:30 PM...when I opened the door, there was Jessy.
I could not believe it!
He wanted to talk but we ran out of time as he was being picked up with his friend by 10pm and of course it's all a big secret that he visited with me so the boys had to hurry back to Jessy's friends to get picked up by dad of the year....

Jess promised to call today to talk and he did call.
But not for the talk but for a favor...
He wanted to get picked up from his dad's place along with his buddy to spent the day here in town.
When I got there, I was informed that I had to drive them back there before dad returns from work so no one would know they had left in the first place! I guess Jessy's dad told him he had to take sides and that is exactly what is happening now that Jess will be working for him for the rest of the summer...

God I feel so used and manipulated and controlled all the time.

I feel like I belong on the Jerry Springer show!

Hope this finds you all well and I thank you all so very much for your kind words, thoughts, prayers & continued support.

HUGS,

Chris ( I think I'm still her somewhere deep down )

UPDATE: Thursday July 21st, 2005.

Jessy called today. He was informed of Al & my departure tomorrow...
Got worried...

He promised to come to HSC on Tues Jul 26 for all 3 appts. because he wants to spend "our" day in the city having a talk about the last 3 1/2 wks...
He wants back in...sigh...
My heart says yes, my mind says no...
Very hard but the time has not come just yet...I'm still fixing me & Al.

Wish you all a very GREAT weekend!

Hugs,
Chris

Monday, July 18, 2005 5:55 PM CDT

Hi folks,

Been taking me a long time to update but had to let my heart heal.

Tomorrow will be 3 weeks that I have not seen of spoken (by his wish) to Jess...
Caught a glimpse of him today for the first time in 3 weeks pulling into the LCBO (liquore store for our American friends)with his dad, I was leaving my lawyers place when I saw them but they did not seen me.
I'm absolutely heartbroken...

Jessy's dog, whom we've adopted by his wish when he was 1st diagnose almost 11yrs ago is dying.

My house goes under power of sale on July 25th...

I am sending Alexis (by her wish) on a much needed visit to family while I sort this all out.

Hope this finds you all well.

Hugs & Peace,

Chris

Tuesday, July 5, 2005 7:08 AM CDT

Hello everyone,

This will be a very emotional posting for me...

Haven't posted in a while, have had nothing good to say...

Most of it I can't share with you due to ongoing legalities with Jessy's dad and company who's payroll I'd been on for 20 yrs until my termination on March 31st, 2005.

It's coming from all sides and I'm getting totally drained from all it all.

Another big issue is Jessy's on and off girlfriend whom I no longer approve of as she has major psychiatric issues and keeps pulling Jessy into her big black hole everytime he tries to leave her. Jessy's dad on the other hand approves and encourages the reletionship as it is his only way to get Jessy to visit with him. She keeps running away from home and Jessy's dad takes her in and he lures them in by letting them play "Ken & Barbie" and is in a financial position to dazzle and give them all they want and she comes from a very modest family ( MUCH like myself ) whom is totally devasted and frazzled by her on going dramas.
So, she made him chose...

As a result, Jessy has chosen to go live with his dad since last Tuesday with his girlfriend as I refused to let her into my home because of the lies, manipulation, control and head games.
I'm devastated that Jessy has chosen to go live there for her and for all the wrong reasons.
He also decided to not go to the hospital ever again for any tests, appointments, consultations or follow ups.

What can I say, I'm lost for words...
It's been a 10 yr battle and his dad has never had any part of it or the childrens life for that matter and this may sound selfish, but I feel I've been tossed like a used & dirty rag for a lifestyle I cannot provide him and a girlfriend who only loves him for what he can provide her.

Jessy's sister Alexis is quite upset and hurt over it as they are best friends, but she did mention several times that she enjoyed her time alone with me these past few days and appreciated the break, as she says "Jessy is high maintenance on all of us".
She's got a heart of gold.

Well, enough venting for one morning, time to fine tune my resume and try to get back to work and recover some of our financial loses since March.

Hope all our American families had a GREAT 4th of July, sorry I didn't post yesterday as I was in family court all day.

Take care everyone and thanks for the ongoing support from you all.

Hugs,

Chris

UPDATE: July 8, 2005

Spent the best of my morning yesterday in EI tribunal for my appeal.
Meantime Dr Grant left a message on my cell for me to page him ASAP.
Was quite concerned about Jessy's latest CRX (after 2 weeks??!!)and wanted to see him today and go ahead with scheduling the lung biopsy.
This seemed to come as a big nuissance to Jessy's dad and his plans so he decided to go ahead and leave last night for a 10 day out of town holiday and skip HSC today.
Jessy has also been off all his meds since June 28th which is when he decided to go to his dad's. This is very bad but dad couldn't be bothered in a 1 1/2 week to come by, didn't want the detour or waste the time to pick up the meds to get him back on track...
Father Of The Year Award!

Jessy still refuses to talk to me and his g/f called yesterday to tell me to stay out of their lives!?

I give up...

Take care everyone.

Hugs,

Chris

Wednesday, June 22, 2005 7:04 AM CDT

Greetings!

Well, Jess & I spent another long day @ HSC yesterday.
The call came in on Monday (they always give us soooo much notice!) that Dr Grant wanted us in for a follow up.
So I managed to get Jessy's psychiatrist to squeeze him in for a consult and to get a refill for his meds.

I have to admitt that I was quite upset about our meeting with Dr Grant and felt the day was a total waste of time and money...I could have gotten the RX for refills faxed over to our drugstore and saved ourselves the trip.
I had to insist on a CRX and got quite angry when everyones attitude was like we were wasting their time!
I'll get into more of it later as I decompress...

We go back in for a CT scan in July.

Found a few very interesting articles about a PET Scan...
HSC is finally getting one in 3 weeks and I was told HSC was to get one 3 1/2 yrs ago but the Harris government canned it...This is an incredible tool!
www.petscaninfo.com

Will post again soon.

Thank you all very much for your continued support!!

Hugs,
Chris

A link I got from Katey's site...
http://www.thesurvivormovie.com/

Update: June 23, 2005

It's with great sadness that I've learned that Haley Girl got her wings...
Heaven gets another beautiful Angel...
www.caringbridge.org/ne/haleygirl

Friday, June 10, 2005 6:20 AM CDT

Hello everyone!

Sorry for the delay in the update but it took 2 weeks for us the get the pathology on Jessy's Colon bump.

Good news at last, they found some abnormal cells but it was negative for cancer!
They will monitor from time to time for any changes in stool samples.

Jessy decided to postpone his appointment for palliative consult until we could co-ordinate his other appointment with psych so that we make only one trip.

He's feeling well other than a cough and goes to school to keep his social life as normal as can be.
Can't believe another school year is coming to an end...

I'm still home full time and most likely will be for the summer as I want to spend it doing as much stuff with the kids I can.
Unfortunately timming sucks and right now, I'm in NO position to do anything and I find it really frustrating that it is taking so long for me and my children to get what's rightfully owed to us for so long.
We desperatly need it and need it NOW!

My legal & financial issues have also become a full time job and I hope to God we get to see the light at the end of the tunnel soon...
It's been taking so long and time is running out very quickly, it's been very hard to keep a positive attitude about it.

Hope this finds everyone well and that you are enjoying the nice weather with your families.

Take good care,

Hugs

Chris

Thursday, May 19, 2005 2:42 PM CDT

Greetings to all...

Been a few rough days...week...we ride the waves...try at least anyways!

Looking forward and not to May 28th weekend...

The 4th annual Mitchell Fraser Memorial Slow-Pitch Tournament is taking place.
My dearest friend Laura, from HSC who lost her sweet little pumpkin to Neuroblastoma has pulled it off again to raise money for cancer research @ HSC!

It's the 3rd month anniversary of Christopher Gist's passing, his B-Day on the 29th, and it would have been his big 20th B-Day...
My dearest friend Leslie who just lost hers on February 28th to NHL...

Many mixed thoughts, feelings, emotions...

But still looking forward to get together with "my family" on the May 28th weekend...

Thank you all for your thoughts, kind words and much needed support.

Hugs,

Chris XO :-)


Monday May 23, 2005

Well folks,

Hope the weekend treated you well.
Leslie, I know it DIDN'T...
Sorry g/f...

Big upper & lower GI tomorrow, leave @ 6:30, check in @ 8:30...very nervous and feel stoopit about it for some reason...like I don't know why but I do...time...

Not that we're not gonna find anything we didn't know or suspect, but will give us a time line, which I'm not quite ready to hear...again...

Won't post till Wednesday...

Nite all...

Hugs,

Chris



UPDATE: May 25, 2005

12 hrs @ Sick Kids yesterday, 3 hrs to prep him for U & L scoping meant 16 glasses of Peglite, 12 bowel movements...poor kid, his bum was sore before they even started...
And yes, they found a bump in his bowel & biopsied...saw the pic and the upstrairs team ( Heam-Onc ) came down to "talk"...
48 hrs for results but wouldn't be surprised if Dr Grant calls as early as today.
In any case, we all agreed that this was the least of J-Man's problems...
Radiation is NOT gonna be an option for the lungs or neck after all, cannot damage both lungs & neck is a big mess, his grafted jugular has collapsed and formed a clot...

He's finding new bumps around his neck constantly...Wilms, fast spreading...
Had a lot of "sit & wait" time yesterday so I grabbed the chart to update myself...many terms I hadn't read or heard before...
Jessy's last scan also showed signs of Pancytopenia, wich is a cell & marrow disorder...
We are requested to come for a meeting next Tuesday to make a final decision...
Wiltop clinical study protocol is the only one available right now...
Heavy duty and Jess says NO!

None of this comes as a surprise, but it doesn't hurt less...

Will post an update when we get news...

Hugs,

Chris XO

PS: Thank you all for your continued support.

And girls, been going through pics and found the polaroids of us at Cathy's place before the weekend @ father in law's...
Wish we could see Leslie & Ian on the 2005 tournament pics...! :-P


Update May 29th, 2005

Hi everyone!

It was really good to see all of you yesterday!

What a day! Glad the weather co-operated...

The Yuk Yuk show was excellent!
Laughed our asses off and I'm sure a few off us almost P'd their pants and / or have a few sore ribs from laughing so much and so hard!

Laura & John, let us know how you did with the tourney this year, I hope you guys do better each and every year...
( PS: John, we MUST talk...Jess & I thank you, by the way!)

This morning, I release the balloons for Chris Gist's 20th B-Day today & yesterday was also the 3 mth anniversary of his passing on Feb 28th......20 blue & yellow balloons...hope one find it's way to Leslie...

www.caringbridge.org/ca/christophersfight

Hope you all enjoy the rest of your weekend and that you are not all to sore to move today...wait till tomorrow, HA!

Take good care everyone!

Hugs,

Chris & Brent

Tuesday, May 17, 2005 5:07 PM CDT

Greeting everyone,

We just got in...long day again.
Where to begin...
As some of you may recall, Jessy had a CT scan 2 weeks ago, the previous one was in January when he found the bumps on his neck.

We sat today with Dr Grant and compared the 2.
There were a few very tiny "shadows" in some parts of the lungs in the January scan.
The scan done April 30th showed many changes.
Those FEW tiny spots have now become MANY very visible lessions everywhere in both lungs.

Dr Grant is convinced it is not Wilms but Carcenoma, his secondary cancer. Doesn't look like Wilms nor does it behaves like it.
Not really masses or tumors and not fast growing like Wilms.
Surgery will not be an option...Radiation...MAYBE...
Also, we found many new lumps in Jessy neck today...
Surgery MAY be an option.

GI is still scheduled for next Tuesday May 24th.
Hope to God that nothing else shows up.
No other decisions will be made till then by anyone.

It's a double edge sword as we have no drugs other than experimental study protocol which he has to meet a list of criterias to be accepted and at this point, Jessy sticks to his guns and refuses chemo, if he could get it...

Which brings everyone to this conclusion:
why do lung biopsies and put him through this if there is no treatment or cure...

I will try and post again soon when I stop spinning like a top and my head is clear.

Thank you all for your support, thoughts and prayers.

Hugs,

Chris

Monday, May 2, 2005 7:44 PM CDT

Greetings all,

Well, we've heard...on Sunday night...from Dr Ron Grant...

And then again today...

Too exhausted and lost to update...Sorry...

Will do so in the morning...

Hugs,

Chris

Tuesday, May 3rd, 2005

Gotta love it when the big man calls you on a Sunday night @ 8:30 pm from his home...

He wasn't in on Friday but was called with results on the CT scan and decided it was best to inform us immediatly, which I appreciate him taking the time and care to do.

The scan showed lessions on both Jessy's lungs and it's safe to say,
I was told, that it is Wilms...

Dr Langer, Jessy's surgeon and the best I may add, has been called and he will be in touch ASAP to do a biopsy of both lungs, which scares the hell out of me.
Seen many kids in big trouble with collapsed lungs from it...

We are also on call for our radiation Doc for a consult @ PMH.

GI has been contacted again by Dr Grant who stressed the emergency of the scope now more than ever.

So we are on call & stand by for everything, still and again...

Will post again when I have more news.

Hope this finds you all well and that you week is going well.

Hugs,

Chris

Saturday, May 14, 2005

Hi all,
Just a brief update, since there is very little to report other than the fact that I phoned Dr Grant Friday morning to tell him we had not heard from anyone about anything @ HSC.
He was beside himself to find out that no one had follow up with us since he personally call Dr Droury, Jessy's GI, to stress to him personally the urgency of this scope.
He immediately faxed him to tell him NO ONE is willing to wait till the 24th. Therefore the lung biopsies are on hold has it has been decided by Dr Langer, J-Man's surgeon & Dr Grant, his Onc. that it is best to wait for upper & lower scope results before putting Jessy under the knife as the results may reveal more extensive surgery needed.

All together very discouraging...

Think I'm getting fit to be tied...!

Hope your weekend is good and thank you all for coming by.

Hugs,

Chris

Monday May 15, 2005

Got a call from Glynnis today, Jessy's nurse. Dr Grant want to see Jessy for a CXR, listen to his lungs & weigh him as Jessy has been losing a lot of weight. He had lost 4 kilos last time he got on the scale @ HSC. Of course, little bugger refuses to get on it for me @ home.

Will post again tomorrow when we get back.

PS: Thank you Leslie for your entry about Jessy @ Christopher's site.
And thank you to all my rat pack g/f's @ HSC for your continued support, couldn't do it without you guys!

Happy Monday.

Saturday, April 30, 2005 3:26 PM CDT

Hi everyone,

Well, we got called in for a CT scan on Thursday and won't likely hear anything back till Tuesday or Wednesday...as usual.

Therefore, had to re-schedule the job interview and have not heard back...sigh...

We are still on call for GI for the very next opening, will keep me grounded.

It was weird being @ Sick Kids on Thursday April 28...it was the 2 mth anniversary of Christopher Gist's passing @ PMH, where he had graduated @ 18...

I felt very lonely being there by "myself"....without my HCS Rat Pack buddies...I miss ya guys...

Hope everyone has a great weekend.

Hugs,

Chris :-)

Wednesday, April 27, 2005 6:21 AM CDT

Good morning,

Our day @ Sick Kids was a long one as usual.
After a long meeting with Dr Grant, we've all agreed that it's time again for a CT Scan. May be inconclusive, but a step we need to take until GI can squeeze us in.
So we are on call for that as well, sometime this week we were told. Jess was discharged with 3 new meds for his GI problems and I hope they do the trick till we can get more answers.

On a different note, I got an interview for a job I applied for last Friday. Huge pay cut, but 15 mins away from home instead of my usual 1:15 twice a day. RELIEF!
Especially winter time! So tired of the long commute...
Problem is my schedule with Jessy's appointments and my ability to apply for a full time job when we are on call and spent so much time @ HSC...who the hell would hire me knowing this, and they would have to know...sigh...
What to do...

Will update when we head back to HSC.

Take good care everyone!

Hugs,
Chris :-)

Tuesday, April 12, 2005

Hi all!
Well, Jessy was suposed to have an upper and lower GI scope yesterday BUT someone messed up and we ended up having a "consult" only with the GI specialist!!!
Needless to say, I went up to heam /onc clinic and had a fit!
We are WAY beyond consult and time is ticking so I STONGLY spoke my mind!
We were told it will be 3-6 weeks before we are seen! I won't have it! We will not wait that long, something must be done and quick.
It's all very frustrating in addition to everything else that is going on...
I must say I am quite impressed with J-Man's behaviour and the fact that he's not lost it yet! Anti depressant must be working!
Will update as soon as I can.

Take care you all and thanks for checking up on us, means the world!

Hugs,
Chris :-)

Tuesday APRIL 19, 2005

Well...
Spent the day in emerg with Jess yesterday...
GI problems AGAIN that started Saturday.
I am beyond frustrated and PISSED!
I don't understand why they can't find what's wrong after a yr of this!
This is our 5th emerg visit for this issue!
AND, if the bloody scope was done like it was supposed to last Monday, this could have been prevented. But instead, we get discharged with a ZANTAC rx and a diagnose of "case of the Flu"...!!!!!!!!!!!!!!!!!!!!!
Can you all believe this...shook my head to the Doc and told him how beside myself I was.
Making a much needed call down to HSC today and letting some much needed steam out...

Will update ASAP.

Hugs,
Chris :-)


Saturday, April 23, 2005

We're off to HSC Tuesday for a psych consult & Heam/Onc clinic.
GI clinic called...May 24th!!??
No way!
Rocked the boat and we've been put on call for first opening!
Squeeky wheel gets the oil :-)!
Also added some new pics.

Have a great weekend everyone!

Hugs,

Chris :-)


PS: APOLOGIES TO ALL! FORGOT TO CHANGE MY EMAIL ADDRESS WHEN I GOT FIRED MARCH 31st. IF YOU HAVE SENT ANY MAIL THERE SINCE, IT HAS NOT BEEN RECEIVED!

SORRY!

Sunday, February 13, 2005 10:51 AM CST

February 28, 2005 1am...

Our handsome Kissyfur has left us...he may be free but his family needs us, please visit & support his family...
Fly high Superman!

UPDATE March 3, 2005 9am

Well, we have a very bumpy road ahead...
We had a long chat with Dr Grant in clinic today, he dedicated
1 1/2 hr of his busy schedule to talk to Jessy and & I.
On call for an MRI and many appointments to come...One with the BMT team...Many "possible" options.
ALL experimental...
All depending on the MRI findings and what Jessy qualifies for as a canditate for study protocols & drugs...Too many "ifs", "maybes" and "buts"...
Waiting game...HATE IT!

Will update as soon as we have more
answers...

Hugs,

Chris

UPDATE: Thursday March 3, 2005 1pm

Well, Dr Grant finally tracked me down @ work today...You know the minute your Onc calls you personally @ home, on your cell & finalyy @ the office that's somethings up and it's NEVER good! Final pathology came in...yes, preliminaries were correct, Wilms again, BUT, they have found secondary cancer cells...carcenoma...usually lung and/or skin cancer cells...most likely due to intensive treatment...
Needless to say, very bad...He's in a panic now to get Jessy in ASAP and start from sratch, meaning head to toe CT, US, & MRI...the waiting is the WORSE part!


UPDATE: March 9, 2005 9AM

Hello all,

We're off to HSC today, FINALLY!
US @ 11 am & MRI @ 5 pm...gonna be a long day!
We have a 4 hr window between apts. and they are doind their best to squeeze Jess in for a CT in between...

Wish us luck!
Will update when I can and when we get some results...

Take care,
Hugs
Chris

Update: March 18, 2005

Finally flipped and called HSC.
MRI was semi clear, few spots, may be scar tissue due to intensive surgery. Ultrasound also semi clear, testy seems enlarged and shadowy.
So, answer? Need further investigating...
Jess is being refered to the GI team for an up and down cam scoping...
(HE'S NOT HAPPY!)
So we don't know much more than we did before. Jess will have his first appointment with the psychiatrist next Wednesday which I'm so glad for.

Well, March break is coming to an end and we haven't done much or gone anywhere. Too much other stuff on the go...As long as we are together...

Have a great weekend everyone!

Hugs,
Chris

Thursday, September 30, 2004 11:25 AM CDT

Hello everyone!

Hope you are all well and that your summer was good.

I know...I know...been a LONG time!

It has been one of the craziest summer I can remember.
Good things, bad things...fortunately, nothing to do with health issues on our part.

Back to school...HURRAY & YAHOO!

Jessy has a BIG appointment @ HSC on Tuesday October 5th...
Yes, we are all very nervous about it but he's been really good all summer except for a nasty cold he's just picked up.

I got some very sad news from my girlfriend Leslie (one of the rat pack) on Tuesday the 28th...here it follows...

"Chris has 3 new tumours, 2 near his heart and another in his lower abdominal area, options are running out....

He looks so good, can't believe it

Hugs"

Needless to say I was speachless, but felt the strong urge to call her and the need to talk to her.
This is Christopher's 3 rd relapsed, he's had BMT and was doing chemo...

Please visit and support them as they desperatly need it.
www.caringbridge.org/ca/christophersfight

Thank you all for you continued support!

We'll post again soon and will catch up with my visits to each and everyone.

Chris

Tuesday June 1, 2004 3:02 PM CDT

Hi all!
Saturday's tournament was a huge success!
They were calling for rain all weekend but we had angels looking after us who gave us a beautiful bright & sunny day.
We had such a great time out there and totally fried.
By dinner & dance time, everyone looked like a lobster!
Preliminary count... over $18,000.00 was raised for HSC cancer research!!!
Great people, great cause, great day & fun.

Thank you all again for visitng & signing J-Man's guestbook, it means so much to us.

I have a lot of catching up, visiting & signing to do myself!

Have a great week & take good care!
Chris :-)


Saturday, June 12, 2004
Still no final count on the $ but what the heck? Eh?
Can you tell we love Orange?
Angel Lisa's favorite color...
Don't we look good and professional & happy??? My family...

BTW, Laura, bottom row is the one putting this together now for the 3rd year on behalf of angel Mitchell (check the pics, Jessy & Mitchell are pictured together @ HSC while under going treatment...Jess got out, last chemo Dec 4/2 before 1st relapse, but Mitchell never did and passed away New Years Eve 2001).
Now, most of these folks have lost precious little ones and a few of us are still lucky to be hanging on to ours...
I am sorry for no visiting and signing but will catch up, I PROMISE :-)!
Have a great weekend!
Love ya all!

Friday, May 28, 2004 2:18 PM CDT

Hello everyone!
Been a while, I know...
Well, tomorrow is the 3rd Mitchell Fraser Memorial Baseball Tournament and I'm really excited!
We hope to raise lots of money for HSC.
We have a team made entirely from parents of kids with cancer. It's awsome to see each everyone other than the hospital scene. Real bunch of nice people getting together for a good cause and so much in common...
Will post monday and let you all know how we made out and how much we raise!


Pray for sunshine!
Have a great weekend!
Chris :-)

PS: Don't forget to check up on Chris & Leslie. Christopher turns 19 on Saturday!!!
www.caringbridge.org/ca/christophersfight

Monday, May 17, 2004 9:26 AM CDT

Good morning everyone,
I know it's been a while since my last post, 2 weeks.
Many things to deal with...family,friends, work, school, home, pet...
You name it! lol
I had the pleasure to visit with Christopher & mom Leslie at PMH on Thursday evening.
It was good to be able to see him and go out for dinner with Les. We had quite the BF! lol
Much needed venting. Sometimes, I feel the only people I can relate to are cancer parents. Leslie has a lot on her plate right now and she is doing an amazing job.
She's one strong cookie! Chris is one brave young man for going thru this all over again.
I've met some pretty amazing people and made some great friends during this journey, probably the only reason why I'm still somewhat sane.

I hope you all have a great week and please keep visiting Christopher & mom for support!
www.caringbridge.org/ca/christophersfight

:-) Chris

Friday, April 30th, 2004 2:00pm

Hello everyone,
I have learned some devastating & shocking news today.
It is with great pain, disbelief & fear today that I was informed of a dear friend of mine son's 2nd relapse.
Leslie & I met @ HSC when Jessy relapsed the first time and Christopher was first diagnosed.
We met a few more terrific moms & formed what is now known as "the rat pack" or the "6 Musketeers".
We hit it off right away and used to grab a Tim's coffee & go for RT outside to vent & support each other.
For that reason, all the nurses on 8A said we were the most "adjusted" parents.
I will never forget the day I walked into US/CT and heard a voice from behind shout "hey you!".
Leslie was there with Chris as I was with Jessy for the boys had found lumps on themselves.
Our worse nightmare...
Chris's first relapse, Jessy's second...
She was there when Jessy's 1 hour surgery turned into 6 and I was the only onle left in surgical waiting room as no one else was allowed to come with me due to SARS.
This is so devastating for all as Chris has just passed his 6 mths successful BMT.
I asked that you please follow the link below and check on them, read his story and sign his guestbook for support as Mother's Day is coming as well as Chris's 19th birthday. They are really wonderful people and need all the prayers, support and encouragement they can get.
Please take a moment.

www.caringbridge.org/ca/christophersfight

Thank you all so much,

Chris

May 04, 2004

It is with great sorrow that I inform you that little Mason has lost his battle with Wilms yesterday afternoon.
Please keep his family, Christie, Bill & Sonia,in your thoughts and prayers as they will need your support in these difficult times.

www.caringbridge.org/ky/mason_d.

May 7, 2004

HAPPY MOTHER'S DAY TO YOU ALL, BRAVE PARENTS & FIGHTERS!!!

Luv, Hugs,& Prayers to you ALL!

Don't forget to check in on Chris and Mason's family, please.
Thank you,
:-)

Wednesday, April 21, 2004 7:01 AM CDT

Good Morrning,
Not much to post, which is probably a good thing!
Looking forward to the weekend as we are beginning our MAJOR landscape transformation.
We will have to build a pen for the dog since she has ruined the backyard lawn. And, we need MAJOR curb appeal in the front!
Next will be the garage & basement.
The reason for all of this is because it really needs to be done and also, we have been looking at country properties and want to sell this place.
Acreage...century home...
Anyhow, the kids will be @ dad's this weekend and I hope we can get a lot done.

Have a great week :-)

Friday, April 16, 2004 6:59 PM CDT

Happy Friday!
I'm so glad the weekend is here and I get to spend it with the kids!!!!
Weather is supposed to be on our side so we may go for a hike.
J-Man is overnighting @ a friend's house and Brent is visisting friends so it's just me and Al and we're having a girly night!

Hope you all have a good weekend.
Chris :-)

Tuesday April 13, 2004

Gooday,
The sun is shining again!
Snow is gone and temp rising.
Nice weekend ahead too. Can't wait!

I received Jessy's appointment card from HSC. We go for radiation consult May 28 and back June 29 for US, CRX, bloodwork, thyroid & kidney function and a check up.
Seems a long wait...

If you visit, please don't leave without signing the guestbook!

Hope your week is going well!

Chris :-)

Wednesday, April 7, 2004 8:51 AM CDT

Hello everyone,
Beautiful sunny day out there.
Much too nice to go to work!
Ah well, no rest for the wicked, lol.

Hope you all have a very good & safe Easter weekend.

TTFN :-)

Tuesday, April 6, 2004 9:39 AM CDT

Good morning,
Spent the day home cuddling with Al yesterday.
We were both under the weather.
I feel that way all time lately. Just want to stay home and curl up in bed. No drive, no ambition. Can't cope with anything. Everything overwhelmes me and seems like an unbearable load. Can't sleep and cry all the time.
I go to work and get nothing done.
Just stare at my PC and pretend to look busy.
I don't know how to "snap"out of it.
Get out of this hopelessly dark hole I fell in.
Just gonna somehow have to and find all the happiness I can from my kids.

Have a good week.

Thursday, April 1, 2004 6:33 PM CST

Hi everyone,
The weather has been SOOOO lousy. Very depressing.
Chest RX was inconclusive but no sign of anything.
We go for radiation FU in May and a US in June.
Feeling very nervous about the time in between FU's.
Jessy seems to be getting over his cold finally!
Think about you all when I hear "The Scientist" by Coldplay and read the Lyrics. It has been a very emotional week for some reason. Glad it's almost over and I get to spend the weekend with my munchkins. Best therapy for a mom!

Thought & prayers to Savannah's family in these very hard times.
www.caringbridge.org/il/savannah
Please visit her site and wear pink in her memory.


Take very goog care,
Chris

Thursday, April 1, 2004 6:33 PM CST

Hi everyone,
The weather has been SOOOO lousy. Very depressing.
Chest RX was inconclusive but no sign of anything.
We go for radiation FU in May and a US in June.
Feeling very nervous about the time in between FU's.
Jessy seems to be getting over his cold finally!
Think about you all when I hear "The Scientist" by Coldplay and read the Lyrics. It has been a very emotional week for some reason. Glad it's almost over and I get to spend the weekend with my munchkins. Best therapy for a mom!
T
hought & prayers to savannah's family in these very hard times.
www.caringbridge.org/il/savannah


Take very goog care,
Chris

Monday, March 29, 2004 6:28 AM CST

Hello everyone,
Well, I never heard from Glynnis on Friday and I'm hoping that all is well. I will however call her again today to ease my mind. Call me negative but "no news is good news" has been long gone from our vocabulary.
The weekend was very productive.
Since the kids were at their dad's, I kicked myself in the butt and started my spring cleaning. This place was a real mess and out of control with cluter and dust.
The dog is also a real problem.
J-Man's room and bathroom were unspeakable of...
Typical teenager BOY!

On a sad note, it is with great regret that I annouce the passing of Savannah on Saturday evening. She fought a long and hard battle with Wilms. I want to express my deepest sympathy to her family who fought so hard with her.
www.caringbridge.org/il/savannah

I wish you all a good week and thanks again for visiting and signing Jessy's guestbook.

Chris :-)

Thursday, March 25, 2004 5:14 PM CST

Greetings,
Glynnis ( J-Man's nurse ) called when I got to the office today. Bloodwork is good, urine is good ( kidney & thyroid functions ) and swab culture came back negative for strep.
I insisted they take one since his throat was so red from caughing for 2 weeks and the fever.
The chest RX has NOT made it to Haem / Onc clinic yet???!!!
I liked it a LOT better when we waited for the pics and took them back ourselves.
Gave me a chance to have a look on the elevator ride up to 8D. Promised to call me back by the morning.
Once again, thank you all for signing Jessy's guestbook. Thank you for caring, the kind words, warm toughts and the prayers.
Have a wonderful evening.
Chris :-)

Thursday, March 25, 2004 5:52 AM CST

Good morning!
Jessy is feeling a bit better today and he insisted on going to school. I know is he still a child but after all he's been thru, he has become to know his body very well and knows its limits. I have to trust him on that.
He's is off to his dad's for the weekend at the end of school today. I just hope he has the good sense of getting proper rest. His dad is not exacty MR MOM and there aren't too many rules at his house...if any.
Jessy promised to call me and keep me posted.
Have a great day everyone!
Chris :-)
Thank you all very much for visiting Jessy's page and signing his guestbook!

Wednesday, March 24, 2004 6:10 PM CST

Hi again,
I just called Jessy's nurse to see if any test results from yesterday were in.
He's had a cold for 2 1/12 weeks now and has middle back pains.
I am even more concerned tonight because he's running a fever of 102.5 - 38.9
Hope to hear from thme tomorrow!

Wednesday, March 24, 2004 5:01 PM CST

Just wanted to tell my dearest friends from HSC, AKA "the rat pack" that I apologize for the small pics of your angels. I'm brand new to this and working on it.
I want you all to know that I didn't go for "RT" yesterday as it didn't feel the same with you there.
As for the "red nailpolish"...I will do my best to spruce it up and add Tanya and a few more...
I hope I can pull this off and not get arrested!
Imagine THAT! LOL
Thank you all for your support and frienship.
Couldn't have done it without you. Think about you daily...
Here or gone and moms too...
Alycia, Mitchell, Christopher H., Hunter, Lisa, Ashley, Richard, Hunter, Christopher G. Quinny and many more...
Looking forward to Mitchell's Memorial Tournament to see you all...well almost all.
Have a great evening,
Hugs & kisses,
Luv
Chris

Wednesday, March 24, 2004 6:15 AM CST

Just a quick note this morning,
There are many links I wish I could put on Jessy's site but unfortunately, the option is only 3 for now. Unless I type them all in as a journal entry.
I will try and get to that in the near future.
Thanks for signing Jessy's guestbook.
Wish I could stay home today but off to work I go since I haven't won the lottery!
Have a good one!

Tuesday, March 23, 2004 3:19 PM CST

Hello everyone,
We have just returned from Sick Kids, a lot earlier than I thought.
FU (follow up), chest RX, bloodwork, thyroid & kidney functions.
No news on any of the tests yet. Hate the wait!
Dr Grant has decided to put Jessy back on 3 mth FU and only do US, bloodwork, physicals, RX and kidney & thyroid functions and no CT's. Said CT's have never been conclusive in Jessy's case because of too many surgeries, grafting and scar tissues. Jessy notice and felt the lumps on both off his relapses to the neck and they want him to monitor his body...???!!!
I was angry at first but they said if anything felt or seemed wrong that they would of course oblidge me.
Jessy on the other hand is quite happy.
I go down memory lane everytime we go to "that place"...
Think about all the friends I've made who haven't been so lucky...
The wierdess thing is that I heard a song I tought about for Jessy...you know..."if and when", on my way down today and I started balling my eyes out. I also tought about why now, after 9 yrs, I decided to start this site and got all paranoid that I would "jinx" myself with all of this.
Life is too strange...and hard at times.

Chin up you all, we got another day!
Take good care :-) Chris
PS: There is no spell check on this site so please overlook the spelling errors!

Tuesday, March 23, 2004 5:22 AM CST

Good morning,
We are off to HSC today for a follow up.
His last one was is January with an ultrasound.
Bloodwork & chest RX today which is good since Jessy has been fighting a cold for the past 2 weeks.
Jessy's last CT scan in December 2003 showed a small spot on his liver and it showed up again in the ultrasound with no changes. We are monitoring this very closely.
Will post more this evening, time permitting.
Have a great day.

Chris :-)

Monday, March 22, 2004 7:26 PM CST

Good evening,
I added some pics of Jessy & his siter Alexis, Jessy's grad in June 03, and our little lost ones...angels.
Have a good nite,
Chris :-)

Monday, March 22, 2004 12:49 AM CST

Well,
Here we go.
My very first journal entry.
I've changed it about 50 times but this one stays.
I was inspired by Brock & Hunter...
Their stories touched me so much.
Also, another young man's story...Christopher's fight.
I was inspired by the great people I've met on this journey.
And in loving memory of Mitchell, Christopher H. & Alycia...
And by my brave and very spirited son who keeps on fighting.
Will try and get this site up and decent in the near future. Please be patient.
As for you in the "rat pack"(you know who you are!),hurry and sign the guestbook please.
Thanks,
Chris,
mom to Jessy DX1995 @ 6 yrs old,
Wilms Tumour Stage III advanced, Favorable Histology

Monday, March 22, 2004 12:43 AM CST

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