"Well"

Hi Everyone,

Last night Grace was stable, Ian doing from midnight to 5am and then I took over at 5. Today she seemed a little worse than she was yesterday in the morning/afternoon and then picked up at night asking to be brought downstairs and she sat in my arms for 10-15min which was wonderful. The doc came this evening instead of in the morning due to plans with her daughter, but this evening said that she was surprised with how the week has turned out. She said last week this time when she was advising us to make sure we had "everything" in order prior to the weekend, she would not have guessed (due to Grace's deterioration from mid to late last week) that Grace would still be doing this "well" today. Of course I took this opportunity to ask if we needed another scan to ensure that Grace was still considered palliative and she assured me that it was not reasonable to believe otherwise and she knew I knew that in my heart... true but as mother I had to ask. But, believe me when I say "well", we are still living devastating circumstances, far from enjoying the Grace that so many of you know. She is still in bed 24 hours a day, rarely opens her eyes and when she does she is extremely cross eyed and today she lost muscle control of her neck so now when we do pick her up it is once again like handling a new born. But "well" in our world today means stable breathing, stable heart rate, good bowel sounds and still occasionally interacting with words. So today she is "well". However this afternoon we did have a scare as she slept. Her breathing became unstable and Ian and I shed tears and watched over her praying that we were not living the moment that we have been fearing. Although living like this is exhausting, I will do it for as long as it is granted to me given my baby is free of pain and content. This is why... tonight, as I finished singing her to sleep (or I thought she was asleep) out of the silence I heard "nite, nite, Mama", I then replied "nite, nite, baby" she then replied "nite, nite, Mama" and this continued back and forth until we had each said it 11 times. Again I am filled with strength to handle the next medical crises. Ian also told me that earlier tonight as she lye in bed, she lifted her little left arm, pulled the corner of Pink (her favorite blanket) over her eyes (balance of body still exposed) and then in her sweet voice said "Where's Grace Dada?" Again Ian is filled with strength to handle the next medical crisis. This is hard to admit because in my eyes she's perfect, but I have to confess that she's never been good at "hide and seek".

Bless her sweet heart.
Les

Still Stable

Hi Everyone,

Sorry I was out of touch yesterday, just trying to maximize my time with the baby. Well I'm happy to report that I did well on "Night Watch" on Tues. night staying awake until 2:30am. When I woke Ian for shift change, Grace woke up and insisted on watching T.T. (what she calls T.V.) downstairs. Ian and I were thrilled, jumped out of bed and headed for the family room. She sat in my arms and watched 1 episode of Dora. She then asked to sleep on the couch. We made a bed for her on the love seat, pushed the couch across the room so that the seats of the love seat and couch were touching and then Ian and I slept beside her on the couch. I woke up at 6am wedged in the crack between the love seat and couch as they slowly slipped apart since going to bed at 4am. Grace was peaceful and we truly enjoyed our couch "camp out". In the morning Grace vomited... seems everything we fed her in the last 48 hours so the doc has really cut back on her feeds, now just 20mls of electrolyte fluid 3 times a day. Its hard to watch her loose so much weight. We can see her little ribs quite well now. I asked the doctor if anything could be done, she said it was part of the process and some mothers find it helpful if someone else changes their child's diaper and sponge baths them so that the mom does not have to witness the deterioration. Mentally maybe this would provide me with stability but at the same time it would rip my heart out not to care for her in her final days so I (with Nana being a huge help of course) will continue to care for Grace. Yesterday she stayed downstairs all day... mostly in her Thomas bed but in the evening my dad and Ian set up a double box spring and mattress in her play area of our family room. This was sad because to fit the bed her little table and stools had to be moved to the basement. I had a little cry to mourn the fact that I will miss seeing her sit at her table to colour... telling everyone joining her at the table what colour crayon they are allowed to use and what picture she would like for them to colour. I'll also never forget last Mother's Day when we were home on a pass from the hospital. Ian insisted I stay in bed while he and the baby make me breakfast. When they called me down, they had breakfast set up at her table and stools in her play room and she was beaming, full of pride that she was "hosting" breakfast. All this being said, I must admit that I slept much better on this new bed set up then I did in the couch crack. Ian stayed up the night so I could have a good sleep (medicated of course) and he and the baby sleep now. Earlier today, we had molds done of Grace's hands and feet. I was nervous that this would upset her but I knew it would be something that I would be happy to have in the future. A girl I used to go to high school with (Kim Scott) came to the house to do it (does this for a side business). Most importantly it was nice to see a friendly face, secondly she was absolutely wonderful with Grace and the entire process was completed without even a fuss and finally it was another reminder to Ian and I that we are going to get through this nightmare, how could we not when we are surrounded by so many wonderful people??

Hope you are all keeping well.
Love,
Les

Stable Day

Hi Everyone,

Grace had an uneventful night which is excellent. Her breathing was stable, she seemed comfortable and tolerated some feed via G Tube. I once again feel short on "night watch" only able to stay up to just after midnight before waking Ian to take over. He let me sleep until 8am. The doc was here at 9:30am and examined her. She was very stable: good pulse, good breathing, good bowel sounds. The Medigas team then showed up to set up her in home oxygen... may need this later in the game but wanted it here before we needed it. The respiratory therapist is coming in the morning to train Ian and I on how to use it. We then moved Grace into her room and convinced her to have a sponge bath by promising to dress her in her Mickey Mouse PJ's after it was complete. She then feel into a deep sleep in her room for hours under a open window which was nice for her to get some fresh air. Sometimes I'm not sure if she is awake or asleep so I read to her and sing to her just in case she's awake and maybe bored. She also seems to enjoy listening to her Dora music box during these times. Her Physo Therapist came by with some food and a story book for Grace. We cried, hugged and remembered the day she taught Grace how to peddle her tricycle... what a special day. When Grace woke up she pooped... a huge accomplishment when your on as much codeine as she is. That buys us another 3 days before we have to start debating another enema. We then brought her downstairs to her Thomas bed for 1/2 hour of story time before she insisted to go back up to the big bed. While my mom gave her her daily head to toe message and strech (to avoid bed sores) I ran down stair for a quick dinner... my first time down stair in days. Fiona and Gerry dropped of Dora PJ's which Ian used tonight when they were making their plans for tomorrow. He promised she could put them on as soon as she woke up and if she allowed Nana to give her a sponge bath. She then watched Strawberry twice with her eyes open and has just fallen asleep, I think for the night. I'm again on early shift & Ian is sleeping. It's weird... the doc's are a little surprised after such a deterioration from Wed. to Sat. that Grace now seems to have stabilized. She is still in bed 24hrs but we have been given the gift of some time to collect some more special memories. Today when I thought she was sleeping, I left her side to quickly go to the wash room. When I was trying to quietly return to my place beside her in bed, she abruptly opened her eyes and said in a stern voice "Mama, nite nite too!" She's always been bossy and I loved this moment of her scolding me for leaving.

Continue to pray for Grace's comfort and understanding of this process.

Love,
Les

P.S. For those of you who access this website through blogger directly you may not have Grace's Website... It's www.gracestanley.org

Hard Night, Better Day

Hi Everyone,

Last night was really hard. Grace started have very long episodes of sleep apnea where she would go 10 seconds between breaths. I woke Ian, he called my parents who came over immediately and we all feared that it may be her final moments with us. Grace then stabilized a bit, Ian went on night watch, I medicated myself to calm down and my parents as well as Ian's mom (who has been staying here in the evenings) all found a place to rest. The doc came very early this morning which was nice after such an eventful night and acknowledged that Grace's apnea had worsened and it is just a step in this horrific process. She assured us that she did not feel Grace was in her final moments but most likely her final days. This statement made me break down in tears. Not out of devastation that it may be her final days, but out of joy that she was not in her final moments... odd.

We wanted to spruce up the bed with Grace's favorite blanket of Dora and Boots eating ice cream (Thanks Sheila) so with this promised we were able to lift her out of be for a quick sponge bath and a trip downstairs to lye on her Dora bed in her playroom. All was going well until she vomited all over the Nana and the Dora bed. Seems as though her GI track has slowed down because she hasn't eaten in days but still had a full tummy. The vomiting is a symptom of pressure on the brain. We consulted the doc and introduced a new med to control nausea. We cleaned Grace up and put her in her Thomas bed in her playroom and we had story time for close to an hour. She then insisted on returning upstairs to bed. It was only an hour, but I think the change in scenery was good for her. Then we had storey time upstairs, Grace listened to Strawberry (3, 4, 5 times... I lost count) and we cuddled the rest of the day away. One of the best things that I find about our days of late is when Grace is getting ready to settle for the night, Ian lies in bed next to her and makes plans for the following day. Nothing big, just waking up to Nana and Papa, watching/listening to Strawberry and hugs with Griffin. But for some reason I love listening to this conversation. I guess it helps me believe we will have Grace tomorrow. He's a great dad.

Love,
Les

Today

Hi Everyone,

Well tonight I'm on early shift. I'm hoping to let Ian sleep until 3am but we'll see if I can stay awake... as you are all aware I'm crappy on "night watch". Grace was once again in bed all day with 4 brief awake times. One this morning (which I already blogged about) then Mo came by for 20min and brought Grace Mickey stickers, a tiera and a magic wand. Mo told Grace that she was her best friend and said she didn't want her to go... as we all fought back our tears, I realized that in these few words Mo had expressed exactly why this is all so devastating. Grace has brought so much love into the worlds of so many in such a short amount of time while spending over half of her life fighting this devastating disease. Why couldn't she have won, and stayed with us after having fought so hard and given so much? We just don't want her to go....
Grace's other two awake times were this evening where she watched Strawberry Shortcake. One of the times she was awake so long that she saw the whole video (30min). Tonight she seemed unsettled when trying to get to sleep. She often lays here and you would not know that she was awake except for her rolling the strings of her favorite pink blanket between her thumb and pointer finger. This is when we sing to her and play her Dora music box. We brought her Mickey and Minnie balloons up from her playroom today. With each day that passes I'm finding it harder to convince myself that she may get out of bed again.

Please pray for Grace's comfort and strength for Mo.

Love,
Les

Better Today

Hi Everyone,

The doc just left. Grace's respiratory rate has increased a bit... which is good. Her heart does not seem to be working as hard as it was yesterday... also good. It's weird how our definition of "good" changes as days pass. She seems comfortable and watched 15min of her new favorite movie "Strawberry Shortcakes Get Well Adventure" (thanks Carly!). During the intro song of this video she actually said "nap (snap) Dada". It was wonderful to see Ian snapping and dancing while Grace lye in bed attempting to snap her own fingers. This is the longest she has been awake and responsive for a couple of days. The doctor talked today about her still being with us on Monday if she remains as stable as she was this morning. She said if that ends up being the case she feels it would be a good idea to get a hospital bed sent to the house and set it up in the family room so we can move her from upstairs to down for a change in scenery. Ian and I did shifts through the night last night given that when the doctor examined her at 6pm she was not good. We did not want something to happen while we were sleeping. Just like at the hospital... I couldn't contribute 50% only able to do a shift between 2:30am and 5:30am. I find the nights so hard. Thank god for Ian. Grace is now sleeping... we hope she has awake time this afternoon so her friend Mo can come over for some stories. Please keep praying for our babies comfort.

Love,
Les

Another Day In Bed

Hi Everyone,

Yesterday Grace got up for an hour, today not at all. The doc came by and is going to start coming everyday. She anticipates we have begun the final steps. Grace seems comfortable. Her breathing rate is low.

Pray for our babies comfort during this devistating process.
L~

Sleeping Lots

Hi Everyone,

Not much to say.... just thought I'd write now while the baby is sleeping. She got up at 10am and was OK but slower than normal until 2:30pm. She then fell asleep in her Daddy's arms. We've been waiting for her to wake but she's sleeping pretty sound. We have to do a supository when she wakes up... I know she's going to be upset with that. Ian and I almost feel like we are living outside of ourselves watching things spin out of control. We know she's dying but every time she sleeps we feel she might not wake up. I just keep telling my self that this has happened to other parents before us and will unfortunately happen to others after us. If they can do it we can too. We just don't know how.

Les

Hard Day that Got Better

Hi Everyone,

Our day started out poor with Grace first waking at 11am very lethargic and unable to sit up in bed. Her eyes were more crossed than yesterday so this with the lethargy lead Ian and I to fear that Grace had sever pressure on the brain that she was unable to communicate to us. Her HemOnc Doc had decreased her Dex (steroid to decrease swelling/pressure on the brain) to half of what it was since Grace was very antisocial and more irritable than normal during their interactions on Monday (Dex causes irritability and mood swings... aka tantrums for a 2 year old). However Ian and I were in fear that this may have been a mistake for we would rather a moody Grace then one in such pain she is unable to lift her head. We consulted with her palliative care Doc who suggested that she may also be constipated (due to the amount of codeine she is on) and to try a laxative. We did. It didn't to much, so we upped her Dex to what it was and gave her an extra dose of codeine and within an hour she was out of bed (2:30pm by the time everything was said and done). We played for and hour before her palliative care Doc showed up to personally assess the change in events and then Nana and Papa brought Grace to feed the duck and rabbits at the park and go for a long walk while Ian and I discussed details with the doc. We are going to increase Dex to 3mls a day, smaller but scheduled does of codeine every four hours with "breakthrough" doses if need be (hoping this change of codeine admin helps with her constipation), laxative twice a day for two days... if we get no action then we move to a supository, and chemo until chemo seems to be negatively affecting her quality of life. I hope these changes result in more time out of bed than what we experience today. We were quiet caught off guard since she was just dancing to her new favorite song "Promiscuous Girl" by Nellie Furtado and Timberland when they performed for the Teen Choice awards on Sunday night. We've been told it can happen this quick but still hard to get your head around. Got lots of calls and notes of support to day after yesterdays horrific news. Thanks to each of you. It is truly what refills our tanks to take on another day in our less than idea world. Let's hope the new med schedule is a hit.
Tomorrows a new day.
Les

No Trial for Us

Hi Everyone,

Thank-you for all your prayers over the last little while. I know everyone has been praying extra hard that a phase one trial would end up being our miracle but it seems as though it's not meant to be. Yesterday, the hospital was once again long and physically/mentally exhausting. I wanted to update last night for all of you who were anxious for results but I was just too empty. Grace's CT Scan showed a 25% increase in the size of the tumour. Collectivly (all 5 locations) probably add up to the size of a large grapefruit. Although the doctors felt that its growth has slowed (they were expecting a 50% increase in size due to what they saw in the first 8 weeks and given it has been another 4) it's growth has still proven to be uncontrollable. The doctors were unsure wether the VP16 (oral chemo we have been giving her by G tube) is effective or not. The slowing of growth may just be a characteristic of the tumour or it may be the effectiveness of the VP16. As a result, it was solely our decission whether or not we should do another round. Ian and I have decided to do another round just incase it is the med buying Grace some time. Due to the spread of the disease we are unable to qualify for a phase one trial because you must present with a certain life expectancy prior to entering the trial that Grace would be lacking. Phase one's also have not presented a cure for 25 years since a new drug was introduced for prostate cancer. Since then they have simply extended the life expectancy of participants (often with sever side effects) by days or weeks. Grace has suffered enough. So after having consulted with Toronto, Hamilton, L.A, Memphis and Chicago our dream has officially come to an end. We will keep Grace at home, surrounded by the people and things that she loves until we loose her to this horrific disease. Again, thanks to everyone for your support. It is what makes this nightmare bearable.
Love,
Les


Love,
Les

Cross eyed

Hi Everyone,

It's Monday, 8am, and after about 6 hours of medicated sleep I find myself sick with anxiety with regards to today's test. I was feeling good about things until yesterday when we noticed that Grace is going cross eyed. What does this mean?? I'm sure nothing good. I doubt it means that the tumour is getting smaller. It was so odd when it happened. I was carrying a load of laundry up from the basement when I heard my mom and Ian discussing that she looked cross eyed. I dropped the load of laundry and with horror dashed over and started abruptly questioning their observation as though they must have been mistaken. After the administration of some pain meds her energy level seemed to return to "normal" but her eye still seemed off. Why was I so shocked? I've been told that she's dying. I'm aware that many children with brain tumours go cross eyed as a result of their disease. Why was I so terribly caught off guard? Once things settled down I went upstairs and tried to digest the events of the past hour. Then I questioned why my phone wasn't ringing off the hook with inquiries about Grace's health? For some reason I felt that everyone should stop what they were doing and acknowledge this devastating change in events. I'm really not sure why I felt like this, she's my baby, no one else's. It just seemed too huge for my sole recognition to be enough. But as the world continued to revolve and people continued with there Sunday afternoon activities, Grace was deteriorating.
L~

CT on Monday

Hi Everyone,

Sick Kids understood wanting a CT now if we are considering phase one trials. They booked it for Monday at 11am and also informed us that there may be a phase one/two trial here in T.O. that may be of interest to us. So on Monday we are hoping to meet with the Director of Experimental Medicine at Sick Kids as well as have Grace scanned an meet with her Neuro Onc team. I truly hope the VP16 is working for her. Although it is known not to be a cure, it could buy us some time to investigate available trials in more detail. Today we brought Grace to Bronte pool with her friends. She's very moody because of her Dex and had 4 tantrums while we were there. This is hard because her friends don't understand why she is upset. All in all I think it was a good day. At least she got some fresh air. Her Daddy just brought her to the pet store to buy a present for Griffin (our cat). I'm off to put on a load of laundry and damp mop the hardwood.

Everyone have a great weekend.
Love,
Les

Spoke to Chicago

Hi Everyone,

Just got off the phone with the Scientist from Chicago. There are a few phase one studies that he feels Grace could qualify for. Of course things are not so easy. Grace will have to stay clinically stable without Chemo for 3 weeks prior to being accepted into a trail. These trials are phase one (meaning one step up from mouse medicine) but really what do we have to loose? This doc recommended we get a CT scan ASAP to determine whether the VP16 (chemo Grace is currently on ) is doing anything. If it is he recommends 1 more round of VP16, if it's not we may attempt to keep Grace off of it for 2 more weeks (she's already been off it 1 week as her "rest"week) in order to qualify for a study. We'll be at Sick Kids tomorrow being overbearing, obnoxious parents insisting on an immediate CT scan... we'll see how it goes.

Pray for our baby.
Love,
Les

Chicago?

Hi Everyone,

After sending the note to Grace's doctor we received an invitation to come into the hospital to speak with them in person. I wasn't really into it because I felt that I was going there to have them tell me in a more politically correct way that Grace is still dying and there was nothing else they could do. Why waste my time?? But I agreed because I truly respect these people who dedicate there whole lives, facing such overwhelming odds, to trying to save the lives of peoples children. I was anxious the whole way there but after popping an Ativan (anti-anxiety med) I was able to sit though another meeting, Ian, myself and a dozen others, explaining why we will most likely be arranging our daughter's funeral sooner as apose to later. Exhausting....... The doctors did agree that Grace is not deteriorating a quickly as they thought and she may have more than the 8 weeks originally granted to us, but for us to be hoping for cure is still unrealistic. As a result we left under the agreement that as long as Grace's blood counts are good on Monday she would be given another round (21 days) of oral VP16 (chemo) and then if she continues to thrive they would at that point scan her because miracles can happen and if we are granted one this is when we would know. Crazy.... sitting around watching you 2 year old thrive while being told she's dying. You'd expect more wouldn't you?? Well we do so we again searched the internet, found a doctor in LA who has successfully treated a 3 year old with ependymoblastoma and contacted him. We heard back from his Fellow (one step down from specialist) today and explained Grace's story. She agreed to forward the info to Dr. Fisher and said there my be a phase one study in Chicago that Grace may qualify for. Again we are filled with hope!

Please continue to pray for our baby.
With Love,
Les

Note to Grace's Doctor

Hi Everyone,

My sleeping pill is not working tonight. Thought I'd share a note with you that I Emailed to Grace's head doc. Not sure if I have a point or if I should just be doubling up on my meds and accepting fate. Grace was absolutely wonderful today! Here's my note:

Dr. Buffet,

Tonight my mind is racing with the possibility that maybe we have not exhausted all options with regards to Grace’s care. I’m sure naturally all parents of terminally ill children must experience denial of the conclusion that has been dictated to them by poor fate, however as Grace continues to thrive 3 weeks post our discovery of such overwhelming disease, I can’t help but question whether we know for sure that our decision not to continue to fight is sound. In the past Ian and I have trusted and then been disappointed. As you are aware we were told in May 2005 Grace’s tumour was benign and nothing to be overly concerned about and then devastated in October when overwhelming disease was discovered. We were also assured of a benign second biopsy that 6 days later we were then told was malignant. This E mail is not intended to rehash area’s of Grace’s care that could have been more ideal, it is to explain why, based on 1 scan, we are unable to grip the conclusion that’s been guaranteed to us by your team. How do we know that the oral VP16 has not been effective to the point of making surgery once again an option? If surgery becomes an option, how do we know she is unable to handle high dose chemo, at least until radiation could be possible? If this tumour is so rare and so few doctors have experience with it, how do you know this is the time to stop fighting? Please do not only read this Email as a desperate plea from a mom wishing to save her baby, but please read it and truly consider whether every stone has been turned over and we are with out doubt doing the right thing. As Ian and I watched Grace shout “look at me, look at me everybody” as she attempted to stand on her head for the first time tonight, you can imagine why we are unable to believe that she is dying. We are willing to experiment. Please consider further treatment for our daughter.

Respectfully,
Lesley Stanley

Regular day at home

Hi Everyone,

Well after Dora on Friday and Santa on Saturday, we decided to have a low key day at home on Sunday. My house was a disaster so Nana and Papa came by to entertain Grace while Ian and I started making scenes of the house. It was weird. As Nana and Papa entertained the baby, Ian started to clean the kitchen and I started on the laundry, I kept thinking how nice of a day it was. Just at home doing normal "home" stuff as though Grace were well and we were just a regular family getting ready for a new week. I can't remember when I last felt like that. Nana worked her magic around 3pm and got Grace down for a much needed nap and I insisted Ian nap with her since he's hardly been able to sleep at night. Nana and Papa again were AMAZING rolling up there sleeves and tackling the housework with me. I truly believe my dad has never washed so many dishes in his life and I'm not really sure how he acquired "kitty pan" (litter) duty but he takes good care of Griffin without even being asked at this point even though he claims to hate cats. My mom is my godsend. Getting Grace to eat something other than hotdogs, getting her to brush her teeth, take a bath and some what behave. It just seems that she never runs out of steam, well I know she does but then she just sucks it up and keeps going, she's truly unbelievable. Grace love's her Nana and Papa so much and it's because every interaction they have with her is wrapped in pure, unadulterated love. Even when my mom puts her in the bath when she doesn't want to go, Grace just seems to know that Nana loves me and knows best so I'm not going to fuss. My parents truly amaze me. Thank god for them.

Not sure what were doing this week. We'll keep you posted.

Love,
Les

Busy couple of days.

Hi Everyone,

On Thurs. I decided that I was not going to send a note in the morning because it seemed as thought the last couple I had sent in the morning were a bit of a waste because everything I suggested that we had planned to do in the day had not happened due to Grace's mood swings. Instead on Thurs I thought I'd start leaving notes in the evening so I could just tell you what had taken place in our day. Unfortunately by the time we get Grace down and finish her two rounds of evening meds (around 11ish), I'm too exhausted to string a sentance together and choose to also try to find some sleep, so we are back to leaving notes in the a.m. Thurs. worked out OK with the photographer coming by the house at 10am to take a couple of pictures of Grace sleeping and then she woke up shortly after that and Andrea (the photographer) continued to snap pictures throughout the morning. The experiance was odd for me. On the Wed night I was having a really hard time, exhausted, empty and despirate just to lay my head down and find peace for a few hours. Ian or course insisted I take a sleeping pill and go up to the spare room to rest... which I did. As a result Ian took care of everything to do with the baby for the entire evening... which is far from easy. 2 sets of meds, constantly preparing very specific meals, sometimes Grace will want veggie soup with only corn and pea's and the letter"O"'s in it... nothing else. And as insaine as this sounds we make it for her. Her Dex causes alot of moodiness and constant hunger.... it's not that her belly is emptying faster it's just that her brain is telling her that her belly is empty. As a result she over eats and cries about "G tube ouching" (the tube that goes directly into her belly from outside ther abdemon). It's kinda a crazy circle of events. But anyways... my point and back to the picture storey. So as a result of Ian taking care of the baby Wed night solo and me being ill, when the photographer showed up to take photos of Grace before rising she was in old peguin jammies, I was in a pair of shorts and and old T shirt of Ian's (no bra, hair in matted mess on top of my head... I guess you could call it a "bun") and there we were having professional photo's taken. I rememeber the first time we went for professional photo's as a family, I even ironed the panty's that went under the dress that Grace wore for the photot's. Oh... how things have changed. Grace was not too keen on the photo shoot thing so we packed up headed to the Depaz's (who had only been home from florida for 7 hours, from 3am to 10am) and continued the shoot there. I think Andrea got some good shoots. We then decided we would bring Grace to the water park that she really enjoyed a couple of weeks ago. We thought that we should stop asking her what she wanted to do (since she was saying 'no' to everything) and just doing. If she enjoyed great, if not we would head home. The water park is in Niagra so we headed out and ended up turning around in Grimsby because Grace said she wanted to go home and see Willie (my mom's dog). On Friday I was nervous about Dora coming because of how moody Grace is but the Depaz kids came over and they all loved it (although Nicky thought her hair was big and scarry and it took her a few minutes to warm up to her). It was really a wonderful afternoon... Thanks so much Gerry, Fiona, friends and Canada's Wonderland who were responsible for making this happen. Now to Xmas yesterday. Many friends and family dropped off gifts... it was truely overwhelmening. Again Grace wanted her friends involved so Friday night the Depaz kids came over and they all hung stockings on our staircase. We don't have a fireplace but Mo explained to all the little ones that that was OK because Santa has a majic key to get into everyone's house who does not have a chimney. We then carried our lite but undecorated Xmas tree up from the basement... which we had plans on decorating but did not due to exhaustion and read Grace a Xmas story before we went to bed. At first Grace and Nicky were nervous when Santa showed up but then warmed up and ended up holaing to the song "Christmas Island" with him... we got a great video. The kids unwrapped gifts for at least an hour then the other "kids" (meaning the husbands/dads) headed out to the driveway to make the movie snow that Grace's godmom Sara had some how got her hands on. Within 1/2 hour the kids were ridding Thomas the Train around a figure 8 track in a winter wonderland. Grace wasn't into the snow and train but for what she didn't get out of it, the neighborhood kids did so again a good decision. Grace and Nicky opted to play in the bubble bath while the other kids played on the train and in the snow. Jen and I went over to get the turkey (cooking at her place) to find it was still frozen in the middle after being in the oven for 5 hours. As a result our Xmas dinner was pizza (leftover from dora lunch) yummy chicken & veggies (chuck droped off for fri. dinner) faihitas (les dropped of for Sat dinner) sheppards pie (lisa made for Sun dinner) mashed potatos, buns and lots of sweets... perfect really. Thank you to everyone for contibuting to our Christmas. We will charish the memories forever. Well I've taken too much time away from my baby... sorry for being out of touch. I'll try to send a quick not every morning.
Love,
Les

Christmas a go... we think.

Hi Everyone,

Well yesterday we did not get to the pool or to see the fish tank at the Mandarin. She didn't even want to play outside. She was very tired and actually had a 3 hour nap in the middle of the day which she has not done since being out of the hospital. Ian and I had a little cry over this because her palliative care team explained to us that this was a step towards the inevitable. When she woke up from her nap she wanted to play "Happy Meal" which is when she pretends she is working at McDonald's (when in her plastic play house on the front porch) and everyone must pretend to drive up to her window and order a happy meal. She insists that you pay before she gives you your meal (real money) but often when she gives you your change it is more that you gave her in the first place. She then passes you pretend food, says "thank-you" and then closes the shutters of the window. Within seconds she then instructs that its someone else's turn. This continues until Mama, Dada, Papa and Nana have all had a turn. We've explained to her that Griffin and Willie do not like happy meals so she no longer tries to get them to participate. She was then up for going to the "window" for her own happy meal. We all loaded into the van (except for Papa who Grace insists drive his "own car papa") and off we went to Mc D's. About 1/2 way there (3 min drive) she started to fuss to come home. She really finds comfort being at home these days. I imagine there are so many odd things happening with her body that it make her anxious if she is not in familiar surroundings. Once she saw Mc D's she agreed to go through the drive thru for a happy meal but did not eat any of it she just really wanted the Hummer (toy of the week). That lead to a quiet night with Steph and Paul dropping off Xmas gifts and decor for our possible Xmas on Sat as well as giving us big hugs which felt good. We are still hoping for Xmas to be Sat but we'll have to see. Tomorrow we have a professional photographer coming to the park with us to take candid photos and hopefully a family photo. Friday Dora is coming for lunch (thanks Gerry). Again we'll just have to see moment by moment how Grace does and responses to things. In this moment we are feeling strong and starting to get Grace used to the idea of Santa. We've already watched Frosty the Snowman twice today and she has told me that she is a good girl and would deserve presents... She quickly added that Mo, Nicky, Jules and Baby Zen are good too. Ian just came in, she just fell asleep for a nap... again my heart fills with sadness.

Love,
Les

P.S. We are going to try to get her to the hospital just to check her platelets since this is the only thing that they will really respond to if there is a problem.

Every day's a little harder

Hi Everyone,

Just thought I'd let everyone know that when Grace woke up this morning she crawled up, snuggled in my arms and patted me on the head... like the way she pats our cat, and she said..."ahhh... buv you mama". She's my angle and every day I love her a little more.

Again we will be close to home today. Maybe the pool for a 1/2 an hour if she's up for it. We are also thinking she might like to see the big fish tank at the Mandarin in Brampton. We'll see. Things are no longer day to day but hour to hour for us. Her meds really cause quick shifts in her personality so we'll see.

Grace can't wait to see her friends Mo and Jules on Thurs when they get home from Disney.

Please pray that we are able to control Grace's pain and help her understand what her little body must endure.

Love,
Les

Codeine every 4 hours

Hi Everyone,

Our weekend has been OK, staying very close to home... play time with Nicky and Paige, playing in the driveway (still no grass) and feeding the ducks at the pond at the end of the street. I finally slept last night which is ironic because it's the first night in the last 7 that I decided not to take a sleeping pill. Grace has been very unsetted (I know it's the Dex but it's still a challenge) and complaining of head and neck pain so we have upped her meds from on demand to scheduled (every 4 hours). I believe we can continue to increase her codeine until it is every 2 hours and then at that point we'd have to change to morphine. Morphine will make her much more tired so we'd like to delay the transition as long as we can. Ian and I have decided general details for Grace's service (still having an issue saying/typing the "F" word). Her palliative care team suggested we do things now while she is still relatively "well". Seems as though organ/tissue donation is out due to how aggressive her cancer is. We will donate her eyes for research. Everything is so unbelievable... I bought a comfy rocking chair today. This was one thing I never splurged on when she was a baby. When we were at the cottage last week, Carly has a great rocker up there and my mom was able to rock Grace asleep every night.... this took some stress out of the "bedtime" routine which we don't seem to have at all. Eventually I believe my mom will stay with us 24/7 to help me with Grace's care. The only thing imaginable that could be worse than our current circumstance would be doing it without the support of my mom, dad and other family and friends that have been so kind. Dinners has begun magically appearing at our door ever evening. This is so wonderful... I brought Grace to the grocery store on Friday and it was terrible. She began complaining of head pain 10min after arrival, I was completely strung out until I got her home and gave her her pain meds. Everything that once seemed simple is so overwhelming for us right now. I've been doing meds for Grace since she's been 15months old but now every med I give her seems to be stepping closer to the inevitable. Thanks so much for you love, support and prayers. I know life has to be easier than this...

Les

Declined by St. Judes

Hi Everyone,

Grace started doing really well on Wed. so first thing Thurs. morning we consulted St. Judes in the U.S. asking if they would consider continuing her treatment. After reviewing her case the Director of the Brain Tumour Program agreed with how Sick Kids handled her treatment and agreed that nothing further could be done, again we were devastated. We came home Thurs. evening to meet with Grace's palliative Care Team (doc, resident and nurse) here at our home. They explained to us how it would happen and steps we can take to be prepared for the challenges... I will not get into detail because it's just too unbelievable really. We took Grace for a bike ride last night and her daddy brought her to her best buddy's (Nicky) house for some play time. Disney sent Grace a gift and a signed picture from Micky given we had to cancel. Sorry if my messages are getting less frequent and more difficult to deceiver. Things are surreal right now and I'm try to stay in touch without taking anytime away from Grace. This is all so devastating.

Les

Down time in Collingwood

Hi Everyone,

We are in Collingwood at Mike and Carly's cottage enjoying so downtime. Although Grace is still a night owl her energy level is decreasing and we are just trying our best to enjoy her when she is doing well and take lots of pictures & videos while giving her countless kisses and hugs. Thanks to everyone for there support. We may be home Friday.

Take care,
les