No Disney for us :-(

Hi Everyone,

Well we did not take the train and stay at the Delta. We decided to go to Great Wolf lodge instead (indoor water park). It was good (Grace loved story time in her jammies in the lobby at 8pm with all the other kids staying at the resort) however the waterpark was too large for Grace to enjoy. The Americana resort is much more her speed. Hopefully we will make it back there. Daddy did however do a great job teaching her how to roll down the hill outside our hotel's sliding door. A couple of times she tumbled head over heals but always recovered and definitely has the grass stained jammies to prove her efforts. Unfortunately, Grace was not doing very well this morning, complaining of head pain as well being very lethargic. We decided to head to Sick Kids for a check up before our trip tomorrow and were now advised that we should not go. Dr. Buffett said Grace may just be having a bad day or she may be deteriorating quicker than anticipated. So instead we came home, left Grace with my parents and Ian and I went to the hospice where we could have Grace spend her final days. After a brief visit we feel strongly that we will keep Grace at home until the end if at all possible. She will be most comfortable here and that is what is most important to us. We are still hoping to have Christmas next week and David (our social worker from the hospital) is trying to set up a private meeting with Dora since Grace's endurance is so unpredictable right now. We may go to Carly's cottage for some quiet time (Nana, Papa included) but other than that we just need to slow things down a bit and see how she responds to the increases in meds that she received today. Please continue to pray that our baby still has some good quality days in front of her and that we are able to manage this possess from home where she is most content. Please also extend your prayer s to the other unwell babies at Sick Kids.

I'll keep in touch,
L~

Keeping busy

Hi Everyone,
Since receiving our devastating news on Tues. we have been doing our best to fill every moment of Grace's day (and sometimes night since some of the maintenance drugs that she is currently on causes insomnia (& mood swings... what a combo in a 2 year old)) with all the joy and love we can scrap together. Tues and Wed. she has enjoyed dinner, bubble baths and bike rides with her best friends Mo, Jules, Nicky and baby Zen. The hospitality that the Depaz's have extended to us has given us peace in a time of chaos although I'm now afraid that Ian's going to get too used to Jen's good cooking and no longer be as impressed with my as of late efforts in the kitchen. Thurs. morning we headed to Niagara to visit the whales at Marinland and then checked in to the Americanna indoor water park. Grace LOVED the wave pool and triple slide that allowed Mama, Dada and baby to go down together holding hands. We spent about $20 trying to win enough tickets from an arcade game to win Grace a Micky Mouse ring that she spotted in the arcades show case. I'm sure daddy could have own it with $5 but Grace has entered the stage of wanting to do everything herself so Ian and I sat back as she fed coin after coin into the baby Godzilla ball game and pounded the button feverishly in hopes of getting the balls in baby Godzilla's mouth. We then brought her to see the lights on the falls which she wasn't that impressed with since she's never seen a waterfall not illuminated so in her world that is just what they must look like. She told Ian and I that it was a lot of "wawa" (water) and whales must live there for sure. We capped the night off with ice cream and an overpriced in room movie about lions that she watched for 5 min. before dosing off. The next morning after Grace decided to order rice for breakfast, we headed back to the waterpark before having to leave at 12:30 to make our 2:30 apt. at Sick Kids to get clearance for our trip to Disney. Grace enjoyed a lunch of honey dipped timbits and apple juice as Ian and I cringed in the front seat of the car as we hoped that she was not going to barf since she ate them quicker than we could keep track... she didn't! Our visit at the hospital was bitter sweet. After receiving medical clearance to travel with Grace next week for 5 days only we got the ball rolling on booking things. Flights were hard to get so we had to change our travel dates from Mon-Fri to Tues.-Sat. (with hospital clearance of course) and we could not get into the same resort as the Depaz's but got in the one next door. The hospital was able to pay for our 3 day park hopper passes for 3 of the 5 of us so that helped financially. After the good news about being given medical clearance to travel we had my parents take the baby home (no need for her to spend one extra min. in the hospital) and Ian and I stayed behind to meet with the palliative care team. We discussed what organ/tissue from Grace we were able to donate... looks like it may just be her eyes due to the amount of drugs involved in her treatment which have deteriorated the balance of her organs, but Ian and I feel good about donating and will do all we can in this area. When they started discussing guildlines for resuscitation we decided to put that on the back burner until returning from our self created "wish" trip. Last night Grace decided that she wanted to take a bath at 10pm, which lasted until 12 midnight at which point we made popcorn (which she insisted on eating piece by piece with her Dora spoon) and read stories until 1:3am. This is when we find it the hardest. When Grace's meds are giving her boosts of energy when Ian and I are running out of gas. But we make it happen the best we can. She woke up just after 8 and has been ready to "play, play, play" ever since. He daddy has her out for a bike ride right now while I fit in my first shower in a couple days. We are then going to take her for her first train ride (Go train out of Oakville and into Union... if she lasts that long). We may stay at the delta Chelsea tonight and enjoy there pool and children's play area. I'm finding it easier not being at home because when I'm here I'm doing laundry, washing dishes and doing house stuff just because I'm anxious which takes time away from Grace. I found when we were away the last couple of days I could relax more. Thank God for kind words from wonderful friends that give us strength to continue. I know it must be hard for those of you looking to help out to know what to do or what to say. I don't even know what I need done or what I need to hear. This situation is just so impossible on so many different levels. But again thank god for the kind words, thoughts and prayers of those who are special to us... you give us strength.
Gotta fit that shower in.
Les

P.S. upcoming activities: Return from Disney on the 5th. Aug. 10th we have a professional photographer coming to follow us for the day to do a photo documentary of "a day in the life of Grace". On Aug. 12 we are having Christmas for Grace. We are lining the house in lights, putting up a tree, cooking a turkey dinner, and getting Santa to visit. Christmas doesn't have to be in December right?? We will be visiting Dora at wonderland, going to the great wolf lodge water park and having molds done of her hands and feet while painting pottery... I'm just in the processes of booking this now. BIG THANKS TO CAROLINE used connections to arrange(what I hear is the impossible) for Grace....breakfast with Cinderella at Disney. If anyone has heard of another incredible experiences for 2 year olds.... let us know (Email is best).

Take good care.
Love,
Les

Our dream is over

Hi Everyone,

Today when we went to the hospital for Grace's MRI we were informed that after further examination of Grace's CT Scan from yesterday that her tumour had not only returned but aggressively spread throughout the left lobe of her brain. Since 100% recection is impossible, and radiation will only be successful with aggressive recection and Grace is no long a candidate for high dose chemo, our dream for a cure for Grace's condition has come to an end. The doctors feel that we have aprox. 2 months left with our precious angle. We are devastated, empty and exhausted after haven fought so hard and watched our baby suffer so much only to reach this unbelievable conclusion. We will spend our final weeks with our baby doing what ever her heart desires (which may include Disney next week if the doctors give us clearance on Friday). We are now praying for Grace to enjoy her last days with us on earth, free of pain and to be able to pass with dignity and peace. We love our sweet, sweet, baby Grace with every stitch of our being and can not imagine our world without her sweet voice calling Mama, Dada, Nana, Papa... RU??? or without her less than challenging way of playing "hide and seek" where she hides in the exact same spot everytime and comes running out to tell you where she is as soon as you have finished counting. Our dreams to bring her to her first day of school, teach her how to skip rope and peddle a bike, as well as ever other life experience we all take for granted are over. We are devastated.

Grace relapses

Hi Everyone,

Ian and I noticed that the mobility of Grace's right arm was decreasing on Saturday so we contacted Sick Kids. Since she had a MRI scheduled for Tues. we were advised to keep her at home until then unless her condition worsened. This mornining (Monday) Grace vomited. I called the hospital and we were advised to come in. After a breif exam Grace was sent down to CT scan where they discovered Graces tumour has grown back. Although just 8 weeks ago Graces seemed clear of disease, today a tumour, again the size of an orange was discover in the same location where it was first discovered. We are devistated, overwhelmed and confused as to why things have gotten so bad so quickly once again. We've been sent home with some new precriptions until tomorrow when we return for her MRI. After her MRI we will meet with the Neuro surgery team to find out wether or not they are able to remove this tumour once again. At this point our only option is surgery followed by radiation. Grace's bone marrow is still too comprimised from her transplant to endure the chemo that was successful in keeping her tumour under control. We are devistated... our baby is happy, playing hide and seek and belly laughing as she pretends to drop things that should not be dropped. She loves to dance and sing and play with her friends Mo, Jules, Nicky and baby Zen. She loves visits from her Nana and Papa and her favorite treat is "ice cream from the window" (drive thru). How can this wonderful, most brillant addition to our world be in such risk to be taken from us??? Please pray that our baby be granted good health. I can't imagine a world with out her. We are desperate for a solution, begging to one of the "lucky ones". Please pray...

With love,
L~

bloodwork at Sick Kids

Hi Everyone,

Grace's bloodwork went well on Thurs. Her liver function is a little compromised but this is to be expecting given the amount of medication (especially the chemo) that she is on. She's been given clearance by BMT to enjoy a week at the beach so thanks to Carly and Mike's generosity we will be cottaging in Collingwood at the beginning of August given that Grace's scan goes well on the 25th. Grace is doing well in physio but still has many challenges to over come with regards to her mobility. Next week she sees a developmental pediatrician and will most likely be accepted to a multi-team which is an occupational therapist, physical therapist and speech therapist who work in unison to help Grace over come some of the challenges this disease has burdened her with. I'll let you know how it goes.

Please continue to pray for our baby.

Love,
Les

At Home Chemo

Hi Everyone,

Sorry I've been out of touch for so long but over the last month we have started Grace's new chemo as well as fit in a move (packing, unpacking setting up all our new services etc) which has kept us busy, busy, busy. Good news is that Grace has been on her new chemo and hormone for 3 weeks and has been tolerating it very well. Her counts have been excellent which has allowed her restrictions post BMT to decrease quite a bit. The only noticable side effects have been pimples around her month, dry skin, a little more tired and changes in her BM's. We go to Credit Valley Hospital once a week for a finger poke to get her counts (just WBC, RBC and platlets) and Sick Kids once a month for more in depth blood work. She is on a 3 month MRI schedule which means she will be scanned on July 25th. We are very anxious about this scan as I'm sure we will be about every scan so please continue to pray that it remains clear of disease. For now it is enjoying summer like any other family would (outside of the med schedule of course). We are thrilled to be home!!

We are at Sick Kids for in depth bloodwork next week. I'll let you know how it goes.

Take care,
Les