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Wednesday, April 4, 2007 2:09 AM CDT

HAPPY 10TH BIRTHDAY ASHLEY!!!

Wow, 10 years old Ashley, where is the time going?? If I had sat and written this earlier in the week I would have tried to add fancy balloons and pictures. I need to get my act together and learn this web site better so we can make it brighter and cooler for you!

So we’ve had 5 whole birthdays without you… I really don’t even know what to think about that. It’s too many that’s for sure. Almost 5 years since you left us, that’s just sort of mind blowing as well… You know we have gotten back to the land of the living but when you sit and really think about it, it’s just plain, wow… how has it been so long… By your next birthday you will have been gone more than we were blessed to have you here… That one will probably freak me out… I sit here now just picturing your gorgeous little face and smile and imagine you jumping into my arms laughing. I can almost feel it. I guess that’s a good thing seeing as it’s been years but I can still have a clear view of how you would look coming at me grinning away…. But of course like I’ve told you before, your locked into ‘5’ years old, so I just can’t quite imagine what you would look like at 10 now… Seriously, your girlfriends are all growing up around us. They just aren’t the little things they used to be…

So my little Ash, we’ve been busy as usual… Sometimes up and sometimes down. The world just keeps on turning and we carry on. It’s really weird how the ‘lows’ kick in and out. I need to spend a little more time with ‘angel’ parents and see how normal what we all go through is…

I did something very cool for you and me today. I probably shouldn’t be telling the whole world about it but I’m proud of you and I will wear it proudly. I got a Precious Moments tattoo on my heart and she’s wearing a little princess dress. She has brown hair with blond highlights and she’s just too cute… You and I loved ( I still do…) precious moments but you little monkey, you used to when you were little stand there and hold one of my figurines up with this little mischievous look on your face and I’d tell you to put it down and you’d look at me like, you think?? I don’t think sooo…. Man I can just remember the face, I wanted to laugh but I was serious you had to put it down and I’d tell you like 2 or three times ‘Ashley, put it down…’ and then you’d look at me and open your fingers and drop it! Still looking at me as you did it!!! I’d be chasing you around the house, and this became such a regular thing that I think I have more broken precious moments than whole ones. When we moved I had a tea pot full of broken pieces and I’ll never get rid of them because I just love remembering the ha ha look in your face when you did it… So from me to you babe… Love you forever… On my heart forever…

So on a totally different note, it seems like almost every time I write to you I’m writing about who has joined you in Heaven. This one really blew me away and nobody really knows much of my past, but I have two half sisters and a half brother that I’m pretty sure I have mentioned two of them before. Well my other half sister lived in BC and we had only met once before and I loved her to pieces immediately. She was going through a rough patch and I wanted to bring her home, but four little babes and the timing wasn’t right. When is it I guess… She is only 36 and I got a call from my birth Mom telling me she was really sick and they weren’t sure what or how long she had. So we flew out to BC and I got to spend almost 4 days with Tracey and her daughter Kate and her son Cole and all her family. She was actually doing really well and we had great talks and were making plans for the summer. We’d decided this was our kick in the butt that we had needed to get to know each other. I guess from what people had said we had something about us that you could tell we were sisters… We had so much in common that it was like, wow, how can two people who are related but have spent 36 years apart have so much in common and so many of the same mannerisms… I left her to fly home and she was doing well enough they discharged her from the hospital that day. Eight days later she passed away… So I am definitely feeling robbed as we had totally hit it off and had big plans… She had so much still to do in her life… So my little Ashley, you now have your Aunt up there with you. She too lost a son at 6 months old and I just still wonder how that all works… Are you all together… I would like to think so… Kate her daughter is only 16 and little Cole is only 4. That just plain sucks… Through all of this I am very happy that I have made connections to her family. All beautiful people… I am looking forward to going back in the summer some time to see them. So I am now blessed with another extended family… Blessings do come in sad packages sometimes…

So babe, I don’t know what else to ramble on about to you… The usual is going on, sports, kids growing up, Derek being a teenager and all that goes with it :-) Danielle growing up and graduating and me wanting to just lock her in the closet and throw away the key :-) Mr. Nathan bringing smiles to our faces everyday through all the funny’s and just Nathan being Nathan…

Oh by the way, I’m sure you already know this too, but Papa Stan is really not doing well. He wants to come and join you and I just don’t know if it’s meant to be his time. He’s given up on life and we don’t know how to make him want it back… We’ll accept what happens but he’s still just so young to be giving up…

Well My Little Princess, it is now officially April 4th. It’s late as usual… Almost 2:00 in the morning. Why oh why can’t I be like normal people and live my life during normal hours??? I’ll be bringing you your birthday balloons tomorrow, when I get my lazy butt out of bed :-). I’m going to go and visit the hospital tomorrow and try and catch up with your nurse’s whom I haven’t seen in forever. Oh I lie, I did have supper with your special nurse a few months ago… It was great to catch up… So I’m taking all sorts of goodies for the treat boxes in the clinic and on the ward. All those needles’ you’d have and get your special little prize. So I’m looking forward to filling those boxes back up… Swiss Chalet for supper Ashley, one of your extra special favorites :-) Open door after that for whoever would like to join us….

So I’d better head off, I love you babe, you know that… We all love you… Forever and ever and that will never ever change…

Happy 10th Honey, hoping your party in Heaven is a blast!

Love Mummy, Daddy, Derek, Danielle and Nathan

Monday, November 20, 2006 1:48 AM CST

Hi little Ash, wow, it’s been 4 years already since we last held you in our arms. How can it possibly be that long already??? There are days it can seem like yesterday and other days that it seems like forever and I can’t wait to see what you’ve been doing… I sit here tonight and I already knew I would have a hard time writing to you… What to say that hasn’t already been said a million times over, I miss you, I love you, we all miss and love you…

I was just listening to one of your favourite bands, Aqua. Remember dancing in the living room and me twirling you around and around by your finger… I miss that, I miss how we loved to just dance and dance in the living room, the music cranked… Music not totally appropriate for your age, but you laughed and danced your heart out… I’m sure your dancing up in Heaven :-)

I don’t really have much to tell you of what we’ve been up to because we really haven’t been up to much (worth mentioning anyway). I fell into a bit of pit for the last while and it was really strange because I tried to blame your brother’s and sister for being slobs (which they are!) and then Daddy for not helping out and it took me forever to realise that hey, maybe your in the pit because it really sucks that your gone and I can’t seem to fix anything around here least of all bring you back and make everyone feel happier again… Not that I wouldn’t be yelling at you too for being a slob :-) See I wonder how you would have turned out little Miss Ashley. Would you have been a tidy little girl or would you dump everything like the others… So many unknowns I guess… When we went to our coping group I remember being told you can take two steps forward, one back, go forward again and when you least expect take two steps back… I think that happened…

So something sad did happen but you already knew that Ashley… Your great great Grandma joined you in Heaven in early October. She was 103 ½ years old and she was one of the most beautiful people I have had the honour of knowing… She was bright and a true pleasure. She was still living in her own home (with people there to watch out for her) but still doing as much as she still could. You would absolutely never have known she was over a 100 years old… So I’m sure you were there waiting for her and we giggled knowing you were probably already doing her nails a pretty purple seeing as she loved purple as well. She kept your picture beside her since the day you got sick and she constantly kept candles lit with prayers for your survival… You only got to meet her a few times but there was a bond that the two of you formed right from the start… I’ll never forget celebrating her 100th birthday after you passed away and the two of you had talked on the phone and made plans to cut her purple cake together. It was truly sad you two couldn’t have had that one more time together… I have put your picture of the two of you in the pictures. It was such a beautiful picture and you had only met twice when that picture was taken. You just leapt into her arms to say goodbye to her and gave her such a big hug! Take care of her Ashley, she is deeply missed…

I left typing this to you until the last minute knowing that I would have a hard time finding things to write to you about. (I managed to find some important things!) So I wonder if it’s because I’m hitting the point in my process that I don’t feel the need to write to you anymore…. I’ll ponder on that one…

Anyway babe, I have to go. I’m bringing you your white balloons in about 10 minutes. It’s really cold outside! Danielle and I tried to tidy up your garden today. It gets sorely neglected now that we live further away and I just don’t seem to get up to see you as much… That bothers me if it goes on for too long and then I feel better after I’ve ‘cleaned’ you up :-) So see you soon!!!

Love you Ashley, truly miss you… Take care sweetheart… Sending you bear hugs and lots and lots of kiss’s…

Monday, April 4, 2006 01:03 AM CDT

HAPPY 9TH BIRTHDAY ASHLEY!!

Dearest little Ashley… You are 9 today and still in my mind our sweet little, adorable 5 year old… Happy Birthday sweetheart! Wow, I can’t believe this is your 4th birthday in Heaven. I don’t even know where to start writing to you tonight… I still wish that you were here with us, every day, every minute, that doesn’t change… Time has made things a little gentler on us so that our every day lives are a little more ‘normal’ but it’s days like today that really make you think, we’ve had 4 whole birthdays without you… 4 years that other parents have had they’re little girls sitting at the table blowing out they’re candles and having all the little girls crowded around doing the birthday party thing driving everyone crazy :-) I see all your little friends and they are all so tall now and I still see you in my memories as little. What would you look like, other than beautiful of course :-). What style of clothes would you like? What would you have wanted for your birthday? So many questions that we will never have answers for. Thankfully we don’t look for those answers like we used to. We are more at peace that you are in the most perfect place to be…. We know you watch over us and we know you are going to watch everything going on today to celebrate your 9th birthday.

So how cool is today going to be? Your school is doing ‘purple day’ in honour of you. That alone is just so awesome it quite caught me by surprise and rendered me speechless, which as you know is pretty hard to do :-) So all those girls and boys wearing purple, and yup theirs even going to be boys wearing purple! Danielle, Derek and Nathan have quite gotten into it. It’s kind of hard to explain but here we are the 4th birthday after you journeyed to heaven and they’re having a great day for you. It’s really been very heart warming that this long after you’ve been gone that you are remembered. We obviously will never forget you as never will your Aunt’s, Uncles, cousins and friends so to share your birthday is going to be really great. Derek and Katie taking your ‘purple’ day into they’re High School is really cool too. They have they’re friends and some of they’re class’s that all know that to wear purple tomorrow is in remembrance of you…

So remember the tree they planted for you a few years ago? They have the stone that will go with it to explain why the tree stands there. So that’s going in tomorrow and I have no idea what it says but you will be forever remembered at Calvin Christian School. That too is totally awesome. I can just imagine kids stopping and looking and either remembering or asking who was she and somebody knowing who you are and you being talked about and remembered. The stone makes it official… forever remembered now babe, forever… Thank you to everyone at the school that played a part in making Ashley’s stone and today a special day, especially to Karen and Kathy who were insistent that Ashley remain a part of the school forever… To Jack (the principal) and to the board, I know it’s hard to know what to do, but believe me when I say that when your child is remembered in such an honourable ways it helps in ways that you couldn’t even imagine… Our child’s memory is all we have and to share that and to honour they’re name and ‘life’ it’s indescribable as I sit here trying to find the right word to write, it really just makes us proud and rejoice full that our daughter will be forever remembered…

Sorry, I’m bouncing around from writing to you Ashley and going off on my usual yap :-) So as usual we’ll open our house to whoever would like to come and have some of your cake. I still don’t have your room done which means I still haven’t gone through your stuff, but hopefully this summer I’ll get to all of that. I sort of stalled when we got home from our family vacation. So ya, we’ve had our first ‘family’ vacation without you, sort of, cause I really do believe you’re with us. It may just bring me comfort but I know and feel you are with us. So we had a great trip in Dominican and it really was a great family vacation. We all got along which was even better. When your not used to doing family trips anymore we were a little worried but it really was enjoyable and we’d do it again in a second.

I didn’t end up doing my journal entry to remind me of what we’d been up to between your last birthday and your anniversary and now I just totally don’t remember what all happened last year. So suffice it to say we have settled into our new home. I thought moving into the new house, knowing we had our ‘first’ family vacation and I was really pumped for our new start on life. Well I discovered that new house or family vacation, we’re still broken… I tell everyone that time really does help but we’re still far from there babe… It hit me shortly after our vacation that it didn’t matter where we lived or what we did, you are still such a big hole in our hearts that we still ‘pretend’ that everything is ok but as Daddy and I have realised we’re still ‘broken’. I wonder if we’ll ever mend properly. Probably not…. We laugh and live so that’s good but as much as we’re supposed to be back to normal, that’s just not possible… That lack of lustre of life still hits us most times. We can go to work and do the daily things but still so many times we struggle with the ‘zest’ for life. Hard to explain and I guess the only people that would get it would be ‘angel parents’…

On that note Ashley, Byron joined you in Heaven this past February. That really made us sad and I so wish that you didn’t have to have more children join you. I know Byron was not a child anymore but Daddy still remembers swapping movies with him on nights that you were both in. I so wish that Sheryll and Rick didn’t have to experience what we, and many others have had to experience. It’s a club that you couldn’t wish on your worst enemy and to know that people you care about now are experiencing pain like no other pain they have ever experienced, it just plain sucks… I pray for them the strength to continue to get up every day to meet they’re new day… As tough as each day is… Precious Nick Snow joined you in Heaven yesterday morning. I still can’t believe it and nobody from around here knows Nick. Everyone from our Neuroblastoma group knows Nick and he was a miraculous boy who defied all odds… A child who fought and fought for I believe 10 years. I had the honour of meeting him in Chicago last year and he had, after 6 years been declared no evidence of disease. For doctors worldwide and for all the parents who struggled every day, Nick was their beacon of hope… He celebrated his 16th birthday in Chicago last year and he had a standing ovation when he spoke to the parents about not giving up hope. He passed away due to complications. He was still cancer free when he passed. We as a ‘Neuroblastoma’ community are completely devastated by his passing as we are with each child, but as our ‘beacon’ of hope it has been very tragic… Shannon and Shelby if you ever read this we are sooo sorry and Ashley I know if you meet Nick in heaven, again I don’t know how it works up there, you will love him… It was a true honour to meet him and to get to know him and he loves kids. So you’ll get along just awesome… Give him a big hug from Beth and I…

Ok baby, I don’t know what else to write to you other than the usual, love you, always love you, miss you still more than words can say… I’m wearing purple nail polish for you babe… Who’s nails are you going to do today :-)? Please be with us as we celebrate your 9th birthday and know that each and everyone one of us love you and miss you…

With eternal love our little Princess,

Mummy, Daddy, Derek, Danielle and Nathan


PS… So what have you thought of us having 2 cats in the house? Something we thought we’d never have and the stories long but these 2 little bundles have helped to bring smiles back to our faces. Even if they are smelly smiles :-) Spaz and Snuggles… What funny names eh? Spaz is because she’s a true spaz and is so crazy you can’t help but laugh at what she gets up to and snuggles because Beth’s little Erika thought he should be named Snuggles because he’s so snuggly… :-). So did you see the balloon Erika sent you the other day? She sent you a pink balloon early :-). Watch for your pink and purple balloons later today. We’re going to stop on our way home from ‘your birthday’ supper and send them to you! Big hugs!!!!! Miss you!!!! Love you!!!

Sunday, November 20, 2005 0:44 AM CST

Dear Precious Ashley,

It has now been three years since we have seen your beautiful face, held you in our arms, told you that we loved you… It’s been far too long Ashley… How on earth have we managed to get through our days? I know you watch over us and are so happy where you are but there are still so many moments and times that I am selfish and wish that you were here with us… I still wish I knew what you did up there and I know I shouldn’t even wonder because it must be so glorious but I wish I could know what you see and how it is, how much do you see us, do you even see us… So many questions and no answers… Just the ache of wishing you were here with us and I didn’t have to wonder what heaven was like…

We’re in our new home and if my idea of heaven is what I think it is you probably watched over us as another change happened in our lives… We survived the move and there’s a bedroom upstairs that could have been yours. I am very happy that the house is big enough that we were able to make you ‘your’ space in the basement. I couldn’t make your space upstairs with the other kids as we’ve moved through our grieving process enough now that seeing that empty room with your belongings would just make us hurt more… Your boxes were still boxed up from the last move and they have been moved once again. This time we know we’re here long enough that I can unpack them and finally go through all your belongings… It’s been long enough that I think I can be strong enough to give some of your stuff to people who need it. Tried to throw out your mouldy life jacket, just couldn’t do it… Tried to give your kitchen set to the bazaar, couldn’t do it… Ok, so maybe I’m not ready to give anything away yet :-) In time… The healing is happening in it’s own way… When people told us that with time it would get a little gentler, they were right…. In no way are we not missing you and wishing you were here every moment of every day, but we have slowly been able to get back to our everyday things. Still get some of those reality checks that gut wrenchingly painful but they are thankfully a little further in-between… Still have those days that we can’t function just so, no explanation just can’t get up and going… Still have those days that I just want to curl up and be sad and miserable but too busy to do it… Still have those days that I know I am long overdue to just have a good bawl because it’s still not fair… I started one of those today after I got home from the bazaar but somehow managed to shake it off, don’t know how because I’m long overdue for a good ‘Ashley’ cry… Man I miss you babe… Truly from the bottom of my heart, just miss you and so wish you were here to enjoy everything that is going on in our lives… Getting a little closer now to that bawl, maybe that’s all I need to do when I know I need to have a good cry, write to you…. When writing your articles in the paper I was fine writing them, but when the lady read it back to me to confirm it, I just barely held it together… How unfair that I have to remember today as ‘your’ heavenly day… How unfair that any of us grieving parents have to worry about what do we do with this day…


Well I think Daddy is going to join me tonight. I am writing this letter to you kind of late and I was hoping I could do a journal entry for people too just to let them know what we’ve been up to since I last wrote. Not sure I’ll get that done tonight but I will add it hopefully in the next few days. So if I manage to get this posted in the next few minutes we can be there at 2:00 am to send you your white balloons… We’ll light your candle and I’ll light them here at home too… Oh Ashley, this just sucks… I shouldn’t be heading off to the cemetery to send you balloons and lighting you candles; you should be upstairs sleeping in your bed! I guess I am more overdue for that cry than I thought… Three years is a long time and yes time has helped but baby you are truly missed and we love you more than words can ever say….

Sorry for crying, sorry for getting mushy… I’ll end this now before it gets any more mushy… Love ya, miss ya, forever and ever…

Mummy, Daddy, Derek, Danielle and Nathan

Monday, April 4, 2005 2:02 AM CDT

Monday, April 4, 2005 1:57 AM CDT

I just wanted to let everyone know how we spent the rest of Ashley’s Heavenly day. Our School was having their annual Bazaar and someone, we’re still not sure who (we have our suspicions :-)) decorated Ashley’s tree for her. That meant the world to us. Such simple gestures of remembrance are so touching to our family and we sincerely say thank you…

We had visitors in the afternoon and Ashley’s best friend Brittany came for a visit and brought a pink Angel for us. Ashley sure has awesome friends but Brittany has and I think always will consider Ashley her ‘best friend’. That is a true friendship that reach’s far into the Heavens… Ashley was truly blessed to have such a beautiful and loving friend who still miss’s her sooo much!

Ken and I managed to go visit Ashley by ourselves later in the afternoon and it was very emotional… I had managed to go through most of the day fairly good with little spurts here and there, but that last visit was our undoing… It was getting dark and even though I had been there by myself at 2:00 am it was different with Ken and I standing there bringing her roses… It’s just so wrong that she’s there at any time but with two parents standing over her, remembering and missing, it’s just plain wrong…

We too are truly blessed with the most awesome friends… We had a houseful on Saturday night and it was truly a night of remembrance of our beautiful Ashley. We were given special gifts to remember Ashley and we thank you so much for everyone’s thoughtfulness and just plain being here for us yet again… We played Ashley’s DVD at around 11:00 and being a very emotional video with the sad songs I put to it, our friends sat, cried, remembered, loved and missed our little babe... We are truly blessed and thank them all for sharing our memories with us and sharing their tears. You could have heard a pin drop and we thank you all for your love and comfort to us…

The rest of Ashley’s balloons that we wanted to send her didn’t get sent until Sunday night as Danielle was in a competition that weekend. It was special to send her balloons as a family and we watched the balloons fly high until we could no longer see them and it brought smiles wondering if she can see us sending them…

Beth and I went to the hospital to catch up with the nurse’s. It’s hard to explain why I feel the need to go around Ashley’s anniversary, but I do and one day I’m sure I won’t need to do that. The hospital is changing slowly but surely and we didn’t see as many familiar faces. I managed to finally take them the collage that I had promised them over a year earlier. One of the nurse’s had asked that I made sure I gave them a picture of Ashley with hair and one without. So it turned out quite pretty and it felt good to finally add Ashley to their collection of beautiful pictures of the nurse’s ‘children’.

So that is how we ‘remembered’ our precious little Ashley on her 2nd Heavenly Anniversary. I’ve put this in not so much for you all to read, but for us to have as our reminder of how we grow, heal and change in this process of grief. Again, one day we will re-read this journal and I’m sure it will give us so much insight as to how we grieved and made it through the process that we feel will just never end and couldn’t as we miss her so much…

So thank you for everyone who remembered Ashley and our family on the 20th, whether it was coming to see us personally, the hugs during the day, the cards, the gifts, the guest book entries, or the thoughts and the prayers that I know were said and I know were what held us up yet again to face another day without her…

Christmas seemed especially difficult after relooking at all of Ashley’s baby pictures. Normally when I shopped it was difficult seeing 5 years old things that made me sad. This Christmas everything girly from baby to age 5 made me sad… I prevailed and we managed to have a fairly decent Christmas with the kids. We spent Christmas morning home with just ‘us’ and we had our own little reading from the bible as to what Christmas was all about. It was sad still but good. Something that I just must share is my best Christmas present I have ever received. Danielle, who is always very thoughtful and fully aware of the deep feelings that we have and are going through, did something very meaningful for me. We have a picture of Ashley watering our garden with the watering can, wearing her pretty little sundress, beautiful locks of curls and just the happiest of smiles. More than a year ago I saw a puzzle of a little Blond Angel watering her garden and I just knew I had to have it, even if it never got done, as it reminded me of Ashley and what I’m sure my little Angel is doing in Heaven. Danielle and our very thoughtful neighbour spent over 3 weeks, sneakily making this puzzle for me. So on Christmas morning I had a framed picture of this precious Angel sitting under the tree. I am truly blessed to have such a caring daughter that she knew how much that puzzle would mean to me. It was over a 1000 pieces and to Gail, thank you so much for all the hard work that I know you both put into it…

So other than that we had a few uneventful months. I started back to work shortly before Christmas and I’m glad to say my brain was finally able to manage it and enjoy it. Baby steps, but we’re getting there…

We have been busy with the usual sports. Nathan is now finished hockey and his team placed 1st. He missed a fair bit of games through the season as it conflicted with his Friday night cadets but that was a great way for him to finish his season. Derek is done all his school sports and indoor soccer. They too placed 1st and it was a great season. He has now started his rep soccer tryouts so busy busy will be starting with him again soon. Danielle has been busy with her competitive dancing and we have already had two competitions and she’s having a great time and they too are doing excellent. So the kids are back at all their normal kid stuff, making Mummy and Daddy run around like crazy!!

We had to have our first family portrait done since Ashley’s passing. I know this is always a difficult hurdle for grieving families and I dreaded it. We didn’t know how to handle it but going from what other families have done we thought we’d try it. We had a picture done with just the five of us and one with the five of us holding Ashley’s picture. It was a unanimous decision that the one we wanted was the one with Ashley with us. So another hurdle has been overcome…

Some sad news. My birth Grandfather, Jim, who I have been blessed to know for almost 8 years now passed away March 26th. He was a wonderful man and I’m sure little Ashley was one of the first ones to greet him. Please help pray for my birth Mom Jackie, Ollie, his wife and all of their family as they mourn the loss of their dad, husband and grandfather. His funeral was a chance that I haven’t had in a while to catch up with my extended family and I wish it was under better circumstances, but it was truly great to see everyone again. What was even more special for me was the time that I got to spend with my Birth Great Grandmother who is turning 102 at the end of April. She is still in fairly good health, has her own home and bless her heart still remembers everyone. Her and I spoke about the loss of our children as she too lost her daughter just 3 weeks after Ashley. It was a special time for me, one that I will never forget and feel blessed to have had. Ashley was always special to her and she to Ashley…

Danielle was in a competition this weekend so I wasn’t able to be there for a very special day. Karen, Brittany’s Mom, arranged something very meaningful for us and to everyone who participated. For Ashley’s birthday there were I believe at least 6 people (I’m not sure of the exact number as I wasn’t there!) that had all their beautiful hair cut off for Locks for Love in Memory of Ashley. That was truly awesome and Danielle was quite disappointed she couldn’t join them as she too has been growing her hair for this occasion. So everyone has new hairdos and our little Ashley was remembered in another special way… Thank you to Karen for organizing this and getting chopped, Brittany, Carol Ann, Stephanie, Katie, Naomi and I’m sorry if there’s anyone else I’ve forgotten. Karen also when spreading the word had others donating ponytails that had already been cut waiting for a good cause. In total they will have 21 bundles to go. WAY TO GO GIRLS!! Ashley would be honoured that you have helped others have wigs as they too go through tough times…

So this now ends my long-winded update that I know I will be thankful for in years to come….

Take care,

Tricia

Saturday, November 20, 2004 0 :23 AM CST

Our Dearest Ashley,

It has been 2 long years since you journeyed to your new Heavenly home. Oh how we still miss you, daily, hourly. You brought so much brightness and light into our lives and I cannot even put into words how much we still miss you and long for you to be here with us in our arms. How do we continue to describe to people the hole that has been left in our hearts? We have been slowly adjusting to living our lives without you as an ever constant beside us. We can laugh, we can smile, we have been slowly able to take things sometimes more than a day at a time which is our journey through our grieving process. How do we explain to people that time does make the hurt a little gentler but that the loss of your sweet loving presence will always until the day we join you, make our heart always heavy with longing… We didn’t know how to handle your first Heavenly Anniversary and here we are at your 2nd and we still are no further ahead. How on earth do you spend a day that was the saddest, most devastating thing a parent could endure?

I have come up with a few things for you this year. We send you balloons on your birthday, your special colours that you love, purple and pink. I am going to try something new for your Heavenly Anniversary. I will be leaving you balloons where you peacefully rest but white balloons for your innocence and pureness. I imagine heaven as the most peaceful and beautiful place anyone could possibly want to be… I imagine you as an ‘Angel’ that looks after all those who join you and those of us still here and my special little Angel, I will send you white balloons with love for all that you have now become and the peace that I know you have…

So my precious Angel I had hoped to visit you at your resting place at 2:00 am but it is raining and very windy. Before I go to bed I will check to see if I can come and put your balloons up, if not I’ll be there in the morning… As usual the weather does not agree with my plans for you… It has been so long since I wrote to you and to all your special friends that still continue to check up on us. I sit here now with tears just rolling as I just miss you more than I could ever express in words to anyone. I love you, Daddy loves you and Danielle especially miss’s you her only sister… Derek and Nathan miss you but have adjusted more easily but they regularly talk of you, which mean’s we know you are an ever constant in their hearts…

To our family and friends still visiting Ashley’s journal, I will make this a little longer and tell you everything we have been up to since my last posting on Ashley’s 7th Birthday. I am still trying to make this somewhat of a journal as I realized that last year is a complete blur and we thought we were doing reasonably well… If I didn’t have this journal I wouldn’t have a clue what we did last year…

I went to Chicago this year in July to meet again with families that are battling your nasty cancer. It was a really beautiful trip, but what made it even more special was they had a whole separate conference for those of us who are now ‘Angel’ parents. It was really nice to sit with people with so much grief that we all relate to even in our own individual ways. Beth and I really did enjoy our visit.

I have a bit of a story to tell you and more for everyone still reading. We went through a difficult time this summer and we hope it is behind us now. It involves Ashley’s beautiful headstone. A long time ago I mentioned in one of my postings that we had met the daughter of the woman who rests in front of Ashley in McMaster when we took Ken in for his smashed finger (she was the triage nurse). I wrote that it was a small world and that I was able to tell her we took comfort that her mother rested there, as she is the same age as my mother who rests at another cemetery. What I didn’t tell everyone, in respect for this families grieving process, was that in our conversation with her she told us they had been very upset with the size of Ashley’s headstone and how it overshadowed their mothers (headstone sizes have restrictions by the city which we did not exceed). We have used the back of Ashley’s headstone with permission from the City to make it special just for Ashley. This family felt that this took away from their mother’s headstone. At least 3 times in our conversation she subtly and nicely suggested Ashley should have her own resting place, a place especially for children who get a lot of visitors etc. I’m not sure if you all remember the dilemma’s we had with Ashley’s headstone. We had to have Ashley’s headstone moved over 12” so we could see the back as the city changed the rules and butted the headstones up against each other. The City gladly did this for us as they had given us permission to use the back… Well at the end of the conversation we knew she would like us to move Ashley, I told her obviously we weren’t going to do that and what was she hoping we could do for her. She told us she needed to move on and get over it… So I never wrote about this conversation and we understood her grief and respected that she now needed to let go of her anger…

Well she obviously didn’t… Little did we know she had regularly been harassing the City and the week before I left for Chicago I went to water Ashley’s beautiful garden and Ashley’s headstone had been moved back the 12” they had poured extra for her. I cannot even explain the anguish and devastation that overwhelmed us. It brought me to my knees that Ashley’s resting place had been violated. Her garden was all out of whack and a mess. It was beyond horrible. She had succeeded at getting the City to get her off their backs and with no call or warning to us they just moved her headstone. With many calls back and forth to the City they finally assured us they would move her headstone back. Well it took over 6 weeks and in the end they asked us to compromise by moving it only 6”. I have had to redo her garden to adjust for the new placement and I know for a fact that this has still not satisfied this family, as they emphatically want her moved. This caused pure nightmare’s on our part as we had visions of our Ashley being pulled up and having to be moved as we would not be able to battle when we still have so little fight in us. Where her headstone is now placed it is even closer to their mothers and Ashley’s now definitely overtakes their mothers. We understand their anguish but we are hoping that we have finally put this matter to rest from our compromise. It has been quiet up until now, we will see. So this summer was not pleasant, as we had to go through yet another hurdle. Battling for where our child was laid to rest, who’s ever heard of it? The City wanted us to meet with this family and hash it out but we refused… There is no way I will meet with a family that thinks it’s ok to think it would be easy for us to move our precious little girl who shouldn’t be there in the first place! I explained to the cemetery people that in ‘my’ darkest of days and thankfully they are now further in-between, I want to start digging just to hold her one more time. These are not thoughts I should be having, as I know she is not there, but dark is dark and that is how low it takes me. I was having awake nightmares of them moving her and me wanting to get at her somehow, someway… This is what those people have put us through and I would really like to say SHAME on them…

So that was the yuck that invaded our home as we still attempt to get up in the mornings and still try and somehow function for our children. It is getting better but we still have a long way to go… We managed a trip away with the kids to a cottage with Kathy and Paul and their kids in Huntsville. It was very relaxing and the kids had a great time. Ken and I sort of just crashed with attempts at bursts of energy… We also went back to Camp Trillium in August and again the kids had a great time. We shared a cabin with Beth and her kids and also Rebecca’s family. So it was really a good week. Thank you to our special friends of that week. What an incredible bunch of people. There are just never enough words to say thank you for what all these ‘special friends’ do for our families and Camp Trillium itself. Nathan even dared to head off to Camp Trillium’s res. Camp for a whole 11 days (without us!!) He had a great time and thankfully that was while I was in Chicago so I survived not having him home for that long. When I got back from Chicago we had another loss in our family. Our dog Amber got sick and we knew her time was very short. I’d like to think she waited for me as I got back on Sunday and the Monday she took a drastic turn and we knew she didn’t have much longer. She passed away at the vets while she was being checked. Ken and the vet had just discussed bringing her home for her final hours but she must have known we couldn’t handle that and passed while Ken and the vet made their plans on the phone. We knew she was older and knew her time had been limited for years really, but it was again, another loss…

So I’ll try for some upbeat news, the gal who started Ashley’s purple ribbon campaign while we were in Philadelphia was awarded the Youth Achievement Award this past summer for her compassion and heartfelt work that she put towards raising money to help Ashley. We are so proud of her!!! Congrad’s Janie! You definitely deserved recognition for that and we are so grateful for the hard work and passion that you put towards Ashley’s Purple Ribbons. I wish I knew that those sort of awards existed, as I would have liked to nominate my niece for the Waterdown area for everything she did for Ashley with the help of our Christian High School - HDCH. She poured her heart and soul into so many things for Ashley and to this day I know I have never expressed enough of our appreciation for what she did… Our youth humble us and we are really so proud of you all for your outreaching and support and love for those in need. Thank you to all of you who helped treasure and tried to help our little babe…

So sports have been raging ramped in our house again. Summer was full of soccer for Danielle and Derek. Nathan played baseball again. It was a great season for everyone. Kept us hopping but it’s so worth it. Each of them are excelling in their own ways and we are just so proud of them. Danielle has rejoined Competitive Dance again this year and I am so happy to say she has some light back in her eyes. She smiles more, laugh’s more and is more of the bubbly little girl that she once was… She still has lots of mending to do, and as us, will forever be changed, but she is slowly coming back to us.

We have passed Rebecca’s one-year Heavenly anniversary Sept. 10th. Her school had an assembly and gave out blue ribbons in remembrance, which Rebecca’s Mom said was beautiful. We had my mother’s 2-year anniversary in Sept and Ken’s dad’s one year was Nov. 16th. Ashley’s is today and Austin’s Nov. 27th. There are just way, way too many Heavenly Anniversary’s with our family and friends…. Each one different in the way we feel and react. Ashley’s Heavenly Anniversary overtakes, overshadows and overwhelms…

Thank you to everyone still visiting Ashley at her resting place. Thank you for the trinkets that get placed for her and ones that are especially hand made for her. Those are precious to us and mean more than we can say…

So where do I end this, I could go on forever. I’ve really just summed everything up. I’ve already told you we are mending very slowly but we will never be ‘over it’ or ‘have moved on’. Time has moved on for everyone and so it should, but please try not to think we should have moved on. We have in our own way…Ashley was ours and she shared herself with many of you but the hurt that we endure is ours and ours alone and all of the hurt and loss that you all feel is yours and yours alone. You cannot understand and we hope you never have to understand. We continue to not know what’s right and wrong in how we celebrate and memorialize just the two days we try and put aside for her. We invite you to join us, as that is a day that we welcome friends and family. We don’t guarantee happiness, but may surprise you. We don’t guarantee tears as we may surprise you… On those two days we just encourage you to talk, share memories and just help us to bring her back closer to us with our memories whether they be happy or sad. She’s in our hearts forever but when more hearts that were touched by Ashley are shared it makes us swell with more pride than we didn’t think was possible…

Ashley,

I managed to do a Memorial DVD for your Heavenly Anniversary. There were so many pictures to choose from but I realised with all the beautiful pictures we have of you, there just aren’t enough, as that’s all we have… It was so good to put this together for you. I tried to explain it someone today… I feel as if I am being a Mother to you again by doing this. I don’t get to physically be your Mother anymore but while I worked on this and tried to pour myself into it, I felt like your physical Mum again… We sat as a family on Thursday night and watched your video and it was emotional and brought many tears and conversations with your sister and brothers. Your brother’s pain became clearer and we realized that it is buried a little deeper. They do you miss you soooo much. They were sad, helpless tears we cried for you baby but it was so good to talk deep about you with them.

I will end this now Ashley, I could write forever to you. Forever is such a long time though and we are realizing that more and more as we come out of our fog… We miss you and love you soooo much. I’m crying again and I just want to hold you. Please feel the big hugs Daddy, myself; Derek, Danielle and Nathan are sending you.

We’ll talk again soon baby…




This day will be a celebration
of the short time you were here.
You will always be remembered
with great love and many tears
But to only feel pain and sorrow
would not be fair to you.
Your life meant so much more to us,
more than words could say.
You were here so briefly,
We wonder if you knew
all the ways you’ve touched
our world and our hearts
and everyone who knew you
since the day God called you home.
Now our child, you’re an angel
with your heavenly Father above,
we see not only what we’ve lost
but our capacity of love.
There will always be a big void
in our life and a hole in our
hearts that will never heal.
Our souls will grieve forever.
Will we forget or stop loving you?
No! Not now…not ever.
As this day is upon us,
oh, how our hearts still hurt.
But even as we mourn your death,
we will always celebrate your birth.


With eternal love precious Ashley,

Mummy, Daddy, Derek, Danielle and Nathan


P.S. Daddy put his new license plates on today for you!!! His big green truck now has ‘ASH4EVR’ and it meant so much to him to have them on by your Heavenly Anniversary. He really miss’s you right now honey, so please send him hugs if you can…

So now Mummy’s driving around with her ‘ASH4EVER’ and Daddy has his, pretty cool eh??? The things we do and will continue to do… Love you babe…

UPDATE:

Ashley did you see the balloons I sent you? It was still a bit windy and drizzly but it meant so much to me to be with you at exactly 2:00 am. At 1:59 as I took the balloons out of the van a song came on that means alot to Daddy and I and has brought many tears as we have missed you. My Immortal by Evanscence. It was to this song that I watched your balloons fly high... It was very bittersweet honey but the song was perfect for how I felt and feel.

It was a time of personal tears as I visited you and when I left another song came on that I thought I wouldn't make it home. A Thousand Miles by Vanessa Carlton which brings back memories of you and your love of dancing but the chorus is perfect... "I need you, I miss you... You know I'd walk a thousand miles if I could see you, just hold you, tonight..."

Goodnight sweet Ashley, I love you...

Sunday, April 4, 2004 1:26 AM CST

Thursday, November 20, 2003 2:00 AM CST

Ashley’s one year Heavenly Anniversary. 2:00 a.m. one year ago today Ashley passed out of our arms and into Jesus’ arms. Who knew that the time would pass so quickly. One day it feels like yesterday and other days we know it’s been too long since we held her in our arms. We have had many memories come back to us in the last few days, as we have laid Ken’s Dad to rest. His visitation was in the same funeral home, which I found comforting. Many people remembered Ashley’s anniversary and wished us well, which too was comforting. Yesterday was Dad’s funeral and it was a beautiful service. It was so befitting of such a wonderful man. It brought back many memories though of a year ago today and sometimes it was too much to bare. Ken and I struggled with that. We needed yesterday to be about Dad and our grief needed to be for him but sometimes it was intertwined and was just too much. There were red roses put in an arrangement with Dad from all the grandchildren. One pink rose stood out for his little Ashley. It always broke Dad’s heart that Ashley had to go through what she went through. Dad hated hospitals but Mom and Dad were regular visitors and Dad liked nothing more than to sit and draw with her or just sit and watch over her while we took a break. His heart was broken when she left us and we rejoice that he is with her now.

Before I go any further I will let you know this journal entry is 10 pages long, so if you want to read it all today just know it’s a long one!

There are no real words to explain how we feel today. I have told everyone I need an Ashley Day. I need to remember, be sad and just let it all be about her. I think having two days a year, her birthday and her Heavenly anniversary, need to be all about her. Someone once said that it didn’t feel right celebrating her birthday when she wasn’t here anymore. Ken and I have 4 beautiful children. They all have birthdays and whether one is in Heaven or not they should all be remembered. Parents should never have to endure adding a Heavenly Anniversary to their child’s special days. I know I will always send her balloons on her birthday as our children here with us have balloons on theirs. I now know I will always put Nov. 20 as a day of remembrance. I struggled with how are we supposed to do this. How on earth do you spend a day that was the saddest day of your life? Remembering, that’s how. I know now I will make no excuses or worry about what other people may think. I will just do what feels best for me and whatever Ken and our children want to do, we will do. Our daughter deserves at least those two days in our lives. Each day we carry on and we are getting on in our lives slowly. Ashley is in our personal lives everyday but you don’t force memories on people or constantly talk about her. On those two days, we will!! I am hoping we will eat one of her favorite foods today, which will probably be Kentucky Fried Chicken. It was the last meal she asked for before she passed away. Many of you may remember me writing that the day we found out she only had days with us our family and friends poured in. She woke up and was so happy to see everyone she said ‘Mummy, you need to get everyone something to eat. How about Kentucky Fried Chicken!’ This all said with the brightest of eyes and the biggest smile. With tears and laughter I grabbed a piece of paper to have her dictate what she would like. She hadn’t eaten in so long and she only ate a tiny bit but made me save her supper. The next day she made me warm it up and she had another nibble. I think of her every time I eat their macaroni salad. She would specify ‘the orange kind, not the white!’ This sometimes meant a longer trip as each KFC carried different macaroni salads but it was always worth it :-).

The memories are flooding in. I wish I had her voice on tape so I could hear it just one more time. We have the videos that we took over the years but as of yet Ken and I have been unable to watch them knowing that visually seeing her would be so difficult. I want nothing more right now than to have her in my arms and have her lay her head on my chest. I have met parents who have lost their children many years ago and wonder how on earth they got through it. I know we will endure and get by but this heartache is like no other.

Many of you will not get the papers that I have posted Memorials in, so I am going to make this entry mega huge and copy and paste them here for you. Some of it will sound redundant as I used some of the same wording in more than one.

HAMILTON SPECTATOR - MEMORIAL PAGE

A year ago today Ashley you lost your long battle with cancer. We as parents can’t understand how our innocent children are faced with such a disease, but through your short 5 years with us you taught us all strength, compassion and most of all unconditional love. You would constantly brighten our days with a look, a kiss, a hug or one of your many mature comments about your love for God or your wish for peace. You are so sadly missed. Mummy and Daddy are managing to go on with our everyday lives but the hole in our hearts will be felt forever. Your journey through the cancer world taught us so much. You never once complained and withstood treatment after treatment with not a murmur. Your grace and dignity could not be shaken and your unfailing faith is what comforts us the most.

We miss you more than words can say and wish everyday that you were still with us. We fear not the path that we must take one day, as we know you will be waiting with open arms. Until then our little princess…

With sadness and heartfelt love,
Mummy, Daddy, Derek, Danielle and Nathan

Safe in the Arms of Jesus
Ashley-Ann Noel Goud
April 4/97 – Nov. 20/2002


FLAMBOROUGH REVIEW - MEMORIAL PAGE

She is away, yet ever near,
Her presence fills each day.
Her voice,
her smile are everywhere,
A memory away.
And though she is
no longer seen,
By family and friends;
She lives because she was
dearly loved,
And love can never end.

In Memory of our precious 5 year old Ashley who journeyed to heaven Nov. 20th/2002, a year ago today. Our hearts are so heavy with sadness at not seeing your beautiful face as we wake each morning or having your loving arms around us for a big hug or one of your pucker kiss’s that you so freely gave. You taught us all so much in your short years with us. The strength and courage in your 3-½ year battle with cancer has helped many as they too face difficult days and they remember that your grace and dignity could not be shaken.

Your compassion and love for life is what helps to get us through each day as we struggle with the deep loss of losing you. You are forever in our hearts and so sadly missed by all of your family and friends.

With eternal love Ashley,
Mummy, Daddy, Derek, Danielle & Nathan

Ashley-Ann Noel Goud
April 4/97 – Nov. 20/02


FLAMBOROUGH REVIEW ARTICLE – Written to say thank you to our wonderful Community.

A year ago today on Nov. 20th at 2:00 a.m. Ashley left our arms after a 3-½ year battle with Neuroblastoma. We have never before understood the heartache that parents endure after losing such a precious child. Ashley was such a bright and bubbly 5 year old that would brighten our days with many of her sweet hugs and kisses. The care that she received at McMaster Hospital was incredible and the people she met there helped nurture her sweet personality through such a difficult journey. She had such strength and courage for such a young child and her most important goal in life was to live life to the fullest. As readers you will probably remember Ashley when we took her to Philadelphia just before she passed for one last effort to try and save her life. The final outcome didn’t change but that treatment bought us as a family more than 3 weeks of quality of time with her. There is not enough room in a whole newspaper to describe what Ashley meant to us as a family and the pain that we feel daily on not having her in our lives anymore. Life has continued and we struggle each day with having only our beautiful memories to get us through.

I would like to take this opportunity to thank the Community yet again for all the tremendous support that was given to us through our difficult days. There were purple ribbons that were sold to help pay for her experimental treatment and in the following months after her passing, events that were planned continued in her honor. Curves held a dance and all proceeds went to Ashley’s fund for her medical treatment. It was such an incredible night and we can’t thank Curve’s enough for such a special night in her memory. Chamber of Commerce held a dinner and auction and it too was such a great night and thanks again to the Chamber for putting together such a special night yet again to honour Ashley’ memory. Thank you too readers for remembering our daughter as we meet people in town and they say ‘Oh your Ashley’s parents’. There are no sweeter words for us to know that Ashley has not been forgotten. The Waterdown Community has shown us how Community’s stand by their residents in troubled times and we are so thankful that we are a part of such a compassionate Community.

Ashley’s Opa, John Goud traveled to heaven to join her just this past weekend on Nov. 16th and we again have to say goodbye to a loved one. Our family has endured many loss’s this past year but it brings us comfort that her Grandmother Noel Aiston who passed 8 weeks before Ashley and now her Opa will be with her to enjoy the comfort of Jesus’ arms.

In remembrance of Ashley-Ann Noel Goud
‘Safe in the Arms of Jesus’
April 4/97 – November 20/2002


I sit and read those words and it still doesn’t seem to say enough. I will be making this entry very long by adding some poems that I have collected over the last year. This entry will be one we can all come to in the coming months and reread some of the special words that are written. Unfortunately most of the poems are to a Mom and I wish I could change all the words to say Mom and Dad as they all mean the same for Ken.



The things I feel so deeply
Are the hardest things to say,
But I, your mother, loved you
In a very special way.

They say that memories are golden,
Well, maybe that is true,
But I never wanted memories,
I only wanted you.

If tears could build a highway,
And heartaches make a lane,
I'd walk the path to heaven
Just to see you once again.

Our family chain is broken,
And nothing seems the same,
But when God calls me home to heaven
The chain will link again.


AT THE REQUEST OF AN ANGEL

Yesterday, in Heaven, a sweet angel,
went to our Father's throne.
This angel said, "Dear Lord, tomorrow,
my Mom just can't be left alone!"

The angel said, "My Heavenly Father,
I've been in Heaven for almost a year.
Wearing wings made of silver & gold...
While Mom's face is stained with tears.

She's going to need me tomorrow,
to give comfort and ease her pain.
I want to surround her with all my love,
Cause her tears still flow like rain!

You have your Mother too, Lord
who once felt the pain of losing you...
She knows what it is like for a Mother,
to feel misery the whole day through...!"

Our Father looked at this precious angel,
who was kneeling at His Throne,
He said, "Take a Band of Angels with you,
so your Mom won't ever feel alone!

As you embrace her with your love,
I'll reach down with loving arms;
I'll touch her with My love and assurance,
that you'll protect her from all harm!..."

Oh! What a sight it must have been today!
To see these Angels with golden wings,
Following that precious angel to your heart...
Bringing all the love they could bring!

Yes, your angel is always with you,
no matter what the circumstance...
So, if you feel a tug at your heart today...
It's your angel asking you for a dance.

~Never an End ~
Dedicated to the Moms who have to live through
that day again.
Copyright 1998
Kaye Des'Ormeaux

IMAGINE

Never once did I imagine
As I carried you in my womb,
that I would have to face
the nightmare of losing you.

Never once did I imagine
Whenever I held you near,
that the day would ever come
When you wouldn't be here.

Never once did I imagine
That life could be so unfair,
Whatever did I do
To deserve such a cross to bear?

Never once did I imagine
All the while I loved you so,
that there would be a price to pay
But with grieving, I now know!

Never once did I imagine
I could go on living without you,
But with love, time and hope,
It's something I will learn to do.

Never once did I imagine
In spite of all the pain I can recall,
that I would consider myself blessed
For just having you at all.

I have one more poem to add but will add that at the end of this entry. Yes it is going to be longer still! My next journal entry may not be until April 4th of next year so this entry will be enough to last us all until then. I cannot stop writing in this journal until I have had a chance to thank many people. Where do I start??? I need to start with Kathy. You are my sister in-law but a true sister in my heart. I cannot thank you enough for the endless hours and support that you have given us in the most difficult days of our lives. You loved Ashley like a mother and I know losing her has forever changed your life. You have always understood what our needs are and been there for us even in our darkest of moments. Thank you… Paul, you too have stood beside us through so much and your compassion that is just such a part of you has been a treasure to us more than words can say. Janine, Stephen, Katie and Jacob, you have been such supportive cousins to our children and you all continually bring Ashley into our everyday lives. None of you are afraid to rejoice in her loving memories and for that our family is so thankful. Janine, I know that Ashley touched your heart like no other and that she is part of the drive that takes you to Medical school. We are so proud of you. Your Christianity is humbling and in times that we question the whys you find beautiful ways to remind us of what Ashley has taught us.

Beth, we have walked such a journey together. No friendships should have to start through the illnesses of our children but we have met for a reason. Through Ashley’s medical journey you were by our side guiding, teaching or encouraging. Since Ashley’s passing you have listened, still encouraged and even through your own difficult journey’s have always found time to worry how we all are. You are a true friend…thank you. All of our other friends and if I start naming them all, we will be here forever :-), thank you from the bottom of our hearts for all the endless support. Each one of you, and I know you all know who I’m talking about as we see you all regularly, have stood by us in the most darkest days of our lives. You all walked us or carried us through. Those days seem to be constant, as our lives never seem to be event free. True friends are so hard to come by and Ken and I have been blessed with many. People have written before that after the death of a child they find out who their ‘true’ friends are; well we have never had to worry about that, as you have all proven that time and time again. Ken’s Mom and Dad were so supportive. Thank you Mom for being the perfect ‘Oma’. You have walked us through a journey that no Grandmother should have to endure either. You supported us when we should have realized that as Grandparents your grief must be insurmountable as well.

So many more… Stan, Steve, Marlene, John & Candy. Thank you all for missing Ashley and helping us to continue to bring her into our every day lives. My birth Mom Jackie, thank you for just knowing when to call and what to do. You walked us through a very difficult time and I know my Mum would be happy you were with me. Our church and all the other church’s, thank you so much for the constant support. You have helped us through many difficult days either by cards, e-mails, food and most importantly prayer. We know those prayers are part of what keeps us going and helps us to get through our days. The hospital. Well there are just too many of you to mention but you are all like family to us. I am so happy that I can still walk the halls and you all have the biggest smiles and hugs. None of you are afraid to mention Ashley and still share memories with me. I have formed new friendships that I hope will last forever. You are all special people and I think you all deserve life achievement awards for working in the pediatric ward. I don’t know how you all bring a full heart to work everyday as I could see Ashley taking pieces of them with her when she went. You embraced Ashley and our family and we will be forever thankful for all the wonderful memories.

I’m going to try and close this by saying such a tearful thank you to everyone one of you that have followed Ashley’s and our journey. When I started this journal it was an easy way to keep everyone informed on our lives so we wouldn’t have to repeat it a thousand times :-). It turned into so much more. It has been a true joy to share Ashley’s last years with you. You have all been so caring and sympathetic, understanding, the list is endless. When we read the guestbook entries and see how Ashley has touched so many lives throughout the world our hearts swell with pure pride. You have all been the listening ear when I sat and purged and it really was therapeutic. So in reality we have more ‘true’ friends than we can even count. Thank you all for being there and continuously coming back time and time again. Our family will treasure this journal and the memories that it will bring. Our children will always have the true picture of who their little sister was and they will read your guestbook entries and I know they will stand in awe of the impact that their sister had on so many lives.

I know there are people I probably left out, so please forgive me. Just know that anyone who is in any way shape or form been involved in our lives in the last couple of years THANK YOU!!!

I’m going to end this endless journal with one last poem. It’s one that makes us happy even though we’re sad. We love you all and I really am writing this with tears as it is like saying goodbye to so many friends…

LAST CHANCE TO WEEP

A year has passed and still you grieve,
The tears flow down your face;
You miss her voice, you miss her laugh,
No one can take her place.

But when you think of where she is
In Heaven's land so fair;
You know you're weeping for yourself,
'Cause there's no weeping there.

Her closest friend is Jesus
And He takes her by the hand,
He talks with her for hours
As they walk in Heaven's land.

There's light once more within her eyes,
Her smile is always near;
So cry your tears while you're down there,
'Cause there's no crying here.

Here is where she's happiest,
Here's where she belongs;
She's praising God with every breath
And joining in the songs.

A joyful glow is on her face
And wonder fills her eyes;
So let your tears flow if you must,
'Cause here, nobody cries.

She has a mansion that is grand
And friends that she can't number;
Eternal celebrating
In this land where there's no slumber.

And she shines brighter than the stars
And angels seek her face;
So grieve and miss her while you may,
There's no grief in this place.

If she could speak to you once more,
One thought she would repeat:
That now, her happiness is full,
That now, her joy's complete;

That Christ will be returning soon
And all creation waits;
He'll wipe the tears from every eye
Just inside Heaven's gates.

One day you'll be together, Yes!
And that day, time can't sever;
There'll be no death or parting then
In that Blessed Forever.

You'll see her anytime you wish,
What joy your hearts will reap!
So cry your eyes out while on earth,
It's your last chance to weep

Ashley we miss you more than words can say and we are so thankful we were blessed to be your parents. All God’s Children are gifts and we are deeply sad that we only had 5 ½ years with you. As each year goes on we will remember how old you should have been, we will know what grade you should be in. We will remember when you should have graduated from Grade School, we will remember when you should have graduated from High School and we will look at your school friends on their wedding days and Ken will wish he was walking you down the isle and I will wish I helped you pick your wedding dress. We will wish you were able to be a mother, there are so many days that we will miss, but in the end all we miss is you….

With all of our love Ashley forever and ever,
Mummy, Daddy, Derek, Danielle and Nathan

Monday, November 17, 2003 1:51 PM CST

I am very sad to tell you that Ken’s Dad, Jan (John) Goud passed away yesterday afternoon. We had been told on Friday that Dad only had maybe 4 weeks left with us due to cancer that had already spread. We needed to make the decision whether to give him palliative chemo to buy us a few more months. Saturday morning Kathy was told Dad had a complication and we had only maybe a day or two at most. It was a blessing to us that he was taken quickly and we know he was rejoicing in meeting the Lord. Ken’s Mom and Dad were married for 43 years so please help us pray for strength for Mom as she now journey’s without her husband by her side. We are all at peace with Dad’s passing and thankful that he is not suffering but that does not mean that his children Kathy, Ken, Marlene and John will not feel a void in their lives. Please keep them and their families in your prayers.

In Dad’s final moments Ken’s Mom told Dad to go and be with Ashley. It meant so much to us that he took his final breath’s minutes later but it was still so hard to know that Ashley would be waiting and we wouldn’t be a part of that. I know Ashley would have given him one of her famous big hugs and led him to Jesus. Ashley is now surrounded by her Opa, her Grandmother, Grandfather and Rebecca. So many loss’s but we take comfort that they are all together.

The funeral arrangements are in the Hamilton Spectator but I will post them here for anyone who doesn’t get the paper and would like to attend.

Kitching-Steepe Funeral Home
Visitation Tuesday Nov. 18th 2-4 7-9

Funeral Wed Nov. 19th at 2:00
Dundas Calvin Christian Reformed Church

Thank you to everyone who has helped us pray for Ken’s Dad. Dad was very well known for his heart of gold. He was such a caring man and always wanted to take people under his wing. He was well loved and will be sadly missed…

Thursday, November 13, 2003 0:51 AM CST

Hello Again. Things seem so quiet around here but in reality I guess it’s not. We still seem to be quite busy mostly with hospital stuff with Ken’s Dad. I can’t believe we’ve bought parking passes for the hospital 3 months in a row. We’ve by far gotten our money’s worth from them!

I was going to sit last night and write but I ran out of steam. I’m glad I didn’t. I was really missing Ashley yesterday. Not that any day is different but there are days that we are quicker to emotion and yesterday was one of them. Yesterday we had a wonderful thing done for Ashley. When Ashley passed away Heritage Green Landscape called our school and told them they would like to donate a tree in Ashley’s memory. We were honored but the school needed to wait to plant the tree until our expansion was complete. Construction and landscaping were completed the end of October and yesterday was the Tree Planting day in Memory of Ashley. Remembrance Day, which was very befitting. It was beautiful and the Principal had Grade One – Grade Three join us in the dedication. He did a magnificent job in explaining to the children the significance of the tree. He used Psalm 1 Verse 3 ‘He is like a tree planted by streams of Water’. The tree is planted where it can overlook the kids play center and water will pool in the inclination nearby. The kids were able to say what Ashley’s favorite colour was and the tree is called a Prunis Schubert (sp?) which has purple leaves and will stand tall and strong. It was all so beautiful and then the children sang Ashley’s favorite song ‘Jesus Loves Me’. Obviously that was very emotional but the kids did a fantastic job and I think they will forever remember the significance of Ashley’s Tree. So thank you to Jack and the Heritage Green Landscape. We are truly blessed to have such caring people still doing such thoughtful things for Ashley. On a funnier note the tree took a while to get to the school. They planted Ashley’s first tree at another Christian School. They were told to come and see Jack and what were the chances but this school’s principal was Jack too! They were expecting a tree also but didn’t know when and thought it was the tree they had been waiting for. Two Christian School’s, two Jack’s and two Trees’. It was really funny but we thought it was cute that Ashley accidentally had another tree at another school too :-). The Landscaping Company quickly gathered up another tree and came as fast as they could to plant it where it was supposed to go. It was all very cute and didn’t in the slightest take away from Ashley’s moment.

So other than that all is going ok here. We are plugging along and I think next week is weighing heavier. Memories are flooding back, regrets and just plain heartache that it is already a year. Ashley’s birthday will always be something I want to celebrate and it almost doesn’t seem right that her ‘Heavenly Anniversary’ be celebrated. That is a day that isn’t supposed to be happy. It’s a very sad day and one that we will never forget. I want to remember, I want to grieve and I want to be hurt at the injustice of losing Ashley. So with that said I am planning nothing special. That’s a day that everyone can chose how they want to handle it. I know the things that I want to do which is nothing more than to go and visit her privately and to have my cry. If anyone would like to spend that day with us you are more than welcome. I will light a candle at 2:00 am on Wednesday morning and keep it running throughout the day in the only way I know how to signify my feelings to Ashley. I know she will be with us and help carry us through that day and on all other days I’m sure she would like to see us try and stay strong. On this one day, her Heavenly Day, I don’t want to be strong….

So that’s about all for now. I need to start working on my entry for Nov. 20th. I will try and include what we write for Ashley’s Memorial in the Newspaper for all of you that don’t live locally. Those words are so hard to write but I am finding it easier than doing her obituary. I can write more of our feelings instead of funeral arrangements. Please help us to continue to keep Austin and Ken’s Dad in your prayers.

Bye for now…

Friday, October 31, 2003 9:07 AM CST

Hi everyone. Sorry it’s been so long again. I’m not sure what I all have to tell you all. It has been the usual busy around here. Danielle has been asked to be a Junior Bridesmaid in May for our wonderful Nanny that was with us during Ashley’s original treatment. She has kept in touch with the family and has helped to mentor Danielle, if that’s the right word. She has taken her under her wing anyway. So Danielle is quite ecstatic about that. Nathan thinks that would be really hard to do because she’s going to have to touch an older boy by putting her hand through his arm. It was a very funny discussion with lots of oooh yucks :-).

We had an absolutely wonderful time on Saturday night with friends who had won a dinner at a fancy restaurant in Hamilton. The restaurant has a limo that brings you to and from dinner. It was a most enjoyable night and I haven’t had a chance to e-mail a thank you, so THANK YOU so much Calvin and Shelly. We didn’t know how much we needed that!

We had a ‘small world’ thing happen. A few weeks ago Ken broke his finger and he thought he should have it looked at, as it was so painful. The triage nurse at the hospital when Ken told her his name asked if we were Ashley’s parents. Proud Ken said yes and thanked her for remembering Ashley. Well it turns out she had never met Ashley but her mother is the lady that rests in front of where Ashley is. She had passed away just 11 days before Ashley. Isn’t it a small world??? I was able to tell her I have taken comfort that there is a lady my mother’s age so close to Ashley :-)

Mairi and I have decided for the moment that we are going to sit on the purple ribbons. Hopefully we will do them mid November, but we’ll see. A couple of reasons. Both Mairi and I have been having a rough go of it and neither of us have the energy that needs to happen to promote them. Another reason is there’s an 11-year-old boy who has cancer and a beautiful article was written in last week’s paper. There is or has been some fundraising going on to help this little boy seek treatment in the states. Sound familiar? I actually need to contact the mother to find out what treatments etc. Ashley’s money has been waiting for a child looking for promising treatment. I don’t know if this is where Ashley’s money will go to yet but I am trying to find the right situation that her money would be most beneficial. Anyway I got off track :-), Mairi and I don’t want to take away from this little boy by promoting Neuroblastoma awareness month. There is something going on with our NB group that they are doing to raise awareness and I will be posting about that in November as well.

Thank you for all the guestbook entries and e-mails that have encouraged me to keep writing and I really do appreciate that you want to keep in contact with our family and know how we’re all doing. I will unfortunately still be ending it as I have always sat here at the computer and just typed. It flowed naturally. It’s not doing that anymore. That doesn’t mean that I won’t one day feel the need to write something. The web page will always be there for us and I can still post if I want to. I’m sure on her special days I may write a poem or something, who knows??? :-) As everyone who knows me, I don’t stay silent for long! I guess we’ll just take it as it comes. I just needed to relieve the pressure of feeling as if I had to write. That was purely self-inflicted so I am telling myself I’m stopping to take the pressure off.

Ken’s Dad needs some prayers right now as well as Austin. He was admitted Wednesday and the doctor there said he has not seen a person this sick in a very long time. I am thankful Austin and Dad are in the same hospital as we are now able to visit both of them. What a silly thing to be thankful for, but Austin is really not doing well and I will appreciate being in the same hospital.

Well that’s about it for now. I have had a few personal e-mails that I have not returned in the last few weeks and I really am sorry. I have been sort of hibernating. I check my e-mails daily and enjoy getting them but am being a bad girl at responding. I never delete them so I will get back to you. Welcome to some of the new readers and thank you so much Cathie for the beautiful pictures that you have been posting. It is refreshing and brings a smile to my face.

Today is Halloween. Not something celebrated by everyone but our children have always enjoyed going out and trick-r-treating. I have only had a few twinges looking at costumes in the stores. My last job for today is getting a pumpkin for little Ashley and taking it to her. I should have done this sooner but life has been a little busy around here. We’re regulars at the hospital again so I don’t seem to be accomplishing anything. We’re having Rebecca’s family over tonight so Erik can go out with Nathan. Kathy and Paul’s kids are going out with our kids too. Danielle has her good friend Danielle S. coming as well so it should be a busy night. I’m sure our Ashley moments will be manageable with the business. Our memories of last year at this time are Ashley dressing up as a bride. Little did we know then how different our lives would be by this Halloween and how bittersweet her costume was. She had been given an LOA from the hospital to come out but she really wasn’t feeling her usual chirpy self. Kathy’s daughter Janine and her friend Melanie had made her a veil and she looked so beautiful but wouldn’t let us take her picture. She fell asleep that night before going back to the hospital in Paul’s arms on the couch and we have that moment captured forever on film. A memory that I know Paul will forever treasure….

So for those of you out trick-r-treating, Happy Halloween!

Bye for now….

Saturday, October 11, 2003 7:29 PM CDT

I haven’t been quiet on purpose and I’m sorry for everyone who has become concerned through my silence. I have just plain and simply had nothing to write about. I wrote a journal entry a few weeks back and never posted it, I tried again the other night and really nothing important seems to come to mind. Our lives are just busy doing the everyday things and just getting through our days still either one day at a time or sometimes half a day at a time. Here’s a bit of what I wrote 2 weeks ago and never posted.

Ken and I have been realizing lately that there’s not really a lot that I can contribute to Ashley’s web page anymore. For the past 10 months I have poured out some innermost hurts and feelings that really only parents who have experienced the anguish of losing a child could even remotely understand. Ken and I will never fully recover from losing Ashley. We will continue on with our lives as best as we can, but people have or will be expecting us to get back into the swing of things. Yes life does go on, and yes we should return to ‘normal’ but for us our lives will be forever changed. I can try and explain it until I’m blue in the face that this is a life altering experience and that we will never be the ‘same’. I will continue to write until the end of Nov. but I feel I really have nothing to contribute to your lives anymore. Ashley’s journal was a way to keep everyone up to date on her courageous battle and then we chose to keep it up and running for the families who may be helped and know somewhat to expect if they too lost a child. I know we’re normal in the way we have handled Ashley’s loss but for all the families who have never experienced this, normal takes on a different meaning. End result, I’m feeling as if sharing our innermost feelings at this point is really not helping anyone.

This has not resulted from anyone doing or saying anything, as our support system has been absolutely amazing. We have been truly blessed to have such good friends and even though they don’t understand what we have experienced and the loss that we feel they haven’t judged or ‘expected’ things of us. We just know that this is a part of life. That is why I haven’t written in so long. I know that everyone’s lives have returned to their normal and I am tired of writing about our woe’s. (I’m going to add something I got today from another grieving Mom at the bottom of this entry about being tired).

It is Thanksgiving and we really do have a lot to be grateful for. Ken and I have each other; we still have 4 beautiful children, one of whom is gracing Heaven with her beautiful presence and personality. We have wonderful family and friends, a roof over our heads and food on the table. That’s not to say we haven’t felt sorry for ourselves over things going on in our lives but after experiencing the loss of a child, everyday problems are just thorns in our sides.

Some people have suggested just writing about our other three children, which I did consider and really I haven’t left them out of Ashley’s journal. They are going through things; some that I have written a little about but I feel it’s not fair to them to write to the world things that they are feeling. It’s sort of like invading their privacy. Our children are experiencing in their own way repercussions of losing a sister but we will hopefully stay on top of everything they are feeling and keep encouraging them to talk about it.

I know I haven’t written any of what we’ve been up to in the last month but there’s really not a lot to say. Kathy and I went and replanted her flowers the other day. It looks really pretty again. Her summer flowers were so big they took over all her ornaments. I went there last week when I was out with a girlfriend at nighttime. I noticed that her new wind chime that I had bought her in Philadelphia was gone. I had hoped it dropped into her flowers but nope, Ashley was thieved yet again. It took me a little bit to realize that another ornament that her cousins had brought back from their summer vacation was missing too. How sad… I really just can’t believe that people steal things from cemeteries. I know it’s something I have to get used to but you really must not be a happy person or have no conscience to do something like that. It won’t stop me from leaving her things, I just hope whoever is doing this that one day they realize what they have done and ask forgiveness. I have wondered if Ashley has put spiders in their beds or something mischievous :-).

So thank you to everyone who e-mailed checking up on us and for continuing to check to see if I have posted. I will continue to post until after Ashley’s one-year anniversary as that will be the last of our firsts. I have been weighed down heavily lately at the loss of Ashley and the fact that the rest of our lives we will not have our little bundle with us to watch her grow. I have friends who are into year 2 and they have finally admitted to me that year 2 seemed harder than year one. It’s not the same for everyone as I have mentioned before that it’s all so individual, but it was nice to hear that what I have been feeling lately is normal.

I took the kids to the Rockton Fair last night and this is the one fair that we always make sure we go to. The kids had a riot and it’s hard to let go of the strings but I was able to let them go off in groups with their friends to do their rides. I guess this is a Friday night Rockton Fair tradition for our whole school. So off they went with groups of school friends. Of course I was paranoid enough that I had a cell phone on me and gave Danielle and her friends a walkie-talkie to keep in touch with me. Nathan was with one of his school friends and his parents so that left me to wander and yap and basically get a really sore back and feet from standing for 5 hours. The things we do for our children :-). Derek is moving into being very independent and wasn’t very happy that we had to leave at 10:00. I had forgotten that our children had done this last year but without us. Kathy and Paul had taken them last year while we were in the hospital with Ashley. I haven’t scrolled back in our journal to see exactly what was going on this time last year but obviously we must have been with Ashley. I think I do need to scroll back now that I think about it. I just remembered that I’m pretty sure we have pictures of Ashley bald at Rockton Fair. I wonder if she got out of the hospital and we were able to take her another day. Thank goodness we have this journal. I will be able to one day go back and see everything we did and have so many more memories because of it.

So Happy Thanksgiving to everyone and hopefully I’ll write a little sooner than last time. Maybe now that I’ve caught you up on everything I’ll have more to write about next time. I find that with friends that I haven’t talked to in ages. I’ll barely have anything to tell them and someone I talk to on almost a daily basis I seem to have tons to say!

Here’s that poem that I mentioned.

WE ARE SO TIRED.....

We are tired of crying for our child.
We are tired of being depressed.
We are tired of longing for our child.
We are tired of not being happy.
We are tired of telling people that our daughter is gone.
We are tired of our daughter being gone.
We are tired of not being able to remember what joy feels like.
We are tired of being angry.
We are tired of feeling guilty.
We are tired of missing our daughter.
We are tired of being told that it is a blessing to have an angel in heaven.
We are tired of being misunderstood.
We are tired of having to explain ourselves when we are depressed.
Again, we are tired of being depressed.
We are so tired of death.
We are tired of grieving.
We are tired of grief.
We are tired of asking why.
We are tired of not getting an answer.
We are tired of having to learn to live without our daughter.
We are tired of being indirectly told to "get over it".
We are tired of re-living the night of our daughter's death over and over,
complete with tears and emotional upheaval.
We are sooooooooo tired of not being able to remember...
every moment of her life.
We are tired of being tired.

Bye for now….

Thursday, September 18, 2003 8:20 PM CDT

Last night I felt like I had so much to write and today I have had a nothing day and now feel at a loss as to what to write. I’m sure by the time I’m done I’ll have written a lot, as usual :-).

Monday Rebecca’s Mom called me to tell me they had received something by courier for Rebecca. I had told you all about her visit with the Olsen Twins, well they had organized a box of goodie’s for Rebecca after they met her. I guess the courier had tried to deliver it on Friday but they were at the funeral home. It was very difficult receiving a package for Rebecca after she had passed away. I can only imagine how difficult that was; I had goose bumps when she told me. What’s really awesome though is everything they put in the box. There was just tons of stuff. Watches, hair products, dolls, dollhouse, bed sheets, curling iron, and the list just goes on and on. That is so incredibly sweet of them. The Twins didn’t find out about Rebecca’s passing away until the Friday. I just wanted to share that as the Olsen Twins took their meeting with Rebecca one step further and I thought that was really thoughtful of them.

Tuesday was the one-year anniversary of my mother’s passing. My Mum passed away on the 16th of Sept and my father was the 19th. It’s so strange that since my Mum and Ashley have passed away how these days now stick so vividly in my brain. I never used to go and see my Dad on his anniversary. When we went to see her on the 16th I realized that my Dad’s was only days away. I had to look up into the sky and apologize to my Dad :-). Danielle was off school that day and I had already made plans with Stan to take flowers up, so Danielle got dragged along, bucket and all. I’m such a good Mum :-)… Danielle got to give Grandma a rose, which she thought was cool though. Cemeteries are such a huge part of my life now that I am able to go and it feels pretty normal to be there. Stan isn’t used to going and I’m glad I was with him. I was able to show him it’s ok to go and just do quick visits and it doesn’t need to be an emotional thing every time. It’s just ok to visit and talk about whatever. So hopefully he has a better feel about cemeteries now. I really can’t believe it’s already been a year. Ashley is only 8 weeks and 4 days later than my Mum so I know we have some difficult days ahead. Maybe it will go as easily as my Mum’s but I doubt it.

So yesterday was a very cool day. Yes Steve, your name is about to be mentioned :-). Becka, Emily and Steve came to our house and took our children out for the night. Is that not just the coolest thing??? You’ll hopefully remember Becka was Ashley’s special friend in the hospital and Emily and Steve were our special friends from Camp this summer. So they came and kidnapped our children for a few hours, which left Ken and I time to go and relax just the two of us. The kids had a great time. They went for supper and then bowling and then off for ice cream. It was truly a spoil them rotten night and they thoroughly enjoyed it. Nathan came home with a blue mouth and blue teeth and a new favourite ice cream :-). Thank you guys so much!!!! We were able to put the kids to bed and then spend some quality time yapping with them, which was very cool for us too. Camp Trillium is VERY lucky to have such ‘Special’ friends and we’re very fortunate that they are taking time out for our family. So as you can all see Camp Trillium is more than just a summer camp! Sorry for keeping you guys up so late, and by the way a Pajama party would be very fun :-).

So on the subject of Camp Trillium, everyone needs to check out their website. Ashley and Nathan are both on their ‘about us’ page. Becka told me last night that there was a picture of Nathan on it and she thought Ashley was too, but Ashley was wearing a baseball cap and she wasn’t sure. Well it is her and we’re thrilled!!! So their web page is www.camptrillium.com and their pictures are in the ‘about us’ page.

So today should have been a workday but Nathan woke up sick. He felt better a few hours later and wanted to go to school. I told him it wasn’t a good idea and then I got a call to come and pick up Danielle, as she wasn’t feeling good again. So Nathan insisted he was much better and he wanted to stay at school when I picked up Danielle. So silly me, I let him. So I came home with Danielle and ½ hour later I get a call that Nathan was sick and I need to go back. Figures… So it was just one of those days. The kids ate lunch and then proceeded to play most of the afternoon while I napped. Something’s wrong with this picture isn’t it :-)?

So that’s it for now. So much for not having anything to write. Tomorrow should be interesting with all the rain coming our way. The kids are hoping for a ‘rain’ day. That would be a first!

If everyone is keeping up with Austin’s web page I’m hoping you all noticed that there’s a shortage of blood and platelets. If anyone wants to do anything to help that’s a huge problem that needs fixing. I’m not sure if I mentioned this before but Hunter’s Mom was telling me you could donate blood in memory of someone. So if it makes giving blood/platelets more special maybe you could donate it in honour of a loved one. Just an idea :-).

Gotta go, thanks for checking up on us and thank you too for all the guestbook entries lately. It’s been a real treat to open it up and see so many of you are still keeping up on our lives. I’ll be writing soon about plans for Ashley’s one-year anniversary. I have no idea yet what we’ll get up to with that. I’m sure I’ll be up to something though. If anyone has any ideas let me know. We also have our Neuroblastoma Month coming up. Mairi and I need to get together soon to finalize that and see where all the boxes are going. So pretty soon you may see ‘Purple Ribbons’ in stores. Pretty neat!

Bye for now.

Monday, September 15, 2003 8:06 AM CDT

Without a doubt it’s been a difficult few days. Rebecca’s funeral home was on Friday and the funeral was Sat. morning. Danielle on Thursday night was having trouble going to sleep. She kept saying her brain wouldn’t shut off and she didn’t know why. I finally had to tell her why. She and her brothers, but more Danielle, have been through more than most adults have been through in their lifetime. I was trying to make her get everything out, as I know it does no good keeping it in. I know she needs a really good cry, not just tears, but a good outright sob. It hasn’t happened yet but I hope soon as she has endured far too much. She did have a few tears that night over losing Rebecca and Ashley. We talked about Heaven and I reminded her of Ashley’s Eulogy and picturing Ashley with Jesus and all the other kids sitting under the tree. With Ashley giving Jesus a new nail polish job :-). I said well now Rebecca is with them. Over to the side are all the broken wheel chairs, crutch’s and IV poles. (Thank you Ken B. for giving us that visual). She took comfort in those words but I know she wonders, as do we all why we have to lose children. I know she miss’s Ashley a lot. More so than the boys as it was her sister and there’s always a special bond with sisters.

Friday was a day for tears. I was finally crying over both of the girls. I realized that even though we were all taking comfort that Ashley and Rebecca are now together it doesn’t take away the hurt that we all continue to feel down here. It gets masked with day-to-day life, as Kelly and Rick now have to learn to do. Even with us losing Ashley there are no words of wisdom to give them. Kelly wanted an 8x10 of the picture of the two of them for the funeral home. I also bought two of the most beautiful hot pink roses and put them in a vase with a card that said ‘Rebecca and Ashley, two special Angels in Heaven. Best Friends Forever’ and we put it behind their picture. It was very emotional but I can honestly say they were the most perfect roses I have ever seen. It’s funny how our emotional system works. Friday there was nothing that I could do without crying. I shopped with tears rolling and really didn’t care. When I got to the funeral home in the afternoon it was as if a switch was flicked. It’s the only way to express what happened. I could feel it. I barely shed a tear at Rebecca’s funeral home in the afternoon or night when I went with Ken and Danielle and Nathan. I guess that’s my emotional defense mechanism kicking in. Who knows…Danielle insisted she wanted to go to the funeral home. She had made them a card. She really did well with just a few tears inside the funeral home. She cried coming out and wasn’t sure she wanted to go to the funeral the next day. She really wanted to go but was struggling. Ken and I finally made the decision for her. She had soccer trophy day on Sat. that she had planned to miss for Rebecca’s funeral. We told her she was going to go to that and be a normal kid for the day. I think she was glad but the first thing she said was ‘can you say goodbye to Rebecca for me’. Then when we picked her up the first thing she asked was how it went. So I know where her brain was that day. Nathan went to the funeral home to hang out with Erik, which the two boys went off and played. Driving down to the funeral home Nathan said ‘I remember Ashley’s funeral home, it was fun’. Well in the innocence of children they were able to wander and play in the whole funeral home and he remembers that. Erik will now remember that too. Playing hide and seek and tag out the front. To be a child again…

Rebecca’s funeral on Saturday was beautiful. Lots of tears of course, but beautiful. What I must say is I was very proud of Brantford. When we were going past to the cemetary I noticed cars pulled over. I remember that’s how it used to be done and it always bothered me that it doesn’t happen anymore. Life is so busy now that people don’t take the time to pull over and pause for a moment. It’s respectful and I was really happy to see it. They had a police escort which I know our funeral home had tried to get and it was too bad they hadn’t as we lost some people through the drive. When I saw the police standing by the driveway into the cemetary saluting as Rebecca went in it just undid me. This is the way it should be done for a child in particular. So way to go Brantford for honoring the loss of yet another beautiful and innocent child.

So that’s been our few days since I last wrote. Thank you to everyone who e-mailed asking for their address. The rest of Saturday and Sunday were just sort of blah days. Ken and I have lost our energy. I went to visit Beth yesterday and spent quite a bit of time yapping with the nurse’s. An interesting conversation that we had was about whether to let a child know they were going to heaven. It had been brought up by the doctors a few times for Rick to let Rebecca know she didn’t have long in her journey. Rick and Kelly decided against it and I know they made the right decision. If they had told her I know it would have taken away from her trip to see the Olsen Twins. She was already not the bubbly Rebecca we all knew and it would have sent her further into depression I’m sure. Children know more than we can give them credit for and I know Rebecca would have talked to her dad if she felt the need to. I know when we finally told Ashley just before she passed away that she was going to join Jesus and Grandma she wasn’t talking anymore but she shook her head ‘NO’. I know she loved Jesus with all her heart but that really ticked her off that she was being told she wouldn’t be with us anymore. So telling her brought us distress and made Ashley fight all the harder. Ken and I will never forget that and I know it differs from child to child but for Rebecca I don’t know what it would have accomplished. If you have a child who has gone home on hospice and can still function, then maybe that conversation can be had so you can take them to all the places they yet want to see and experience. Who knows, but it was an interesting conversation and one that the nurse’s have to face with families quite regularly.

Austin’s in pretty rough shape. He is in a lot of pain, which the doctors are trying to get under control. This is nothing he has ever experienced before so my heart just bleeds for him and the family. We need to pray the chemo he’s getting will start eating the NB cells and take some of his pain away. Hopefully within the next few days they’ll see it working.

So that’s about it. I’d better get to work. Back to the land of the living I suppose. I managed to squeeze in lunch with Shannon’s Mom last week and it’s so interesting to hear her talk about not functioning properly and our brains not working the way they used to. It makes me feel normal… whatever that is now.

Bye for now.

Thursday, September 11, 2003 12:28 AM CDT

It is with a heavy heart that I have to write again that there is now another beautiful Angel. Ashley’s best friend Rebecca passed away last night. I wrote yesterday that she was in a lot of pain and that she didn’t have much longer. She took a very quick turn for the worst yesterday and it was evident by the afternoon that she probably wouldn’t make it through the night. I had picked up their son Erik and Kelly and taken them home in the afternoon to pack so Erik could stay with us. I dropped Kelly off and came back to feed everyone and it was no more than an hour after I left that she passed away. It was very peaceful which I am so grateful for…

Ashley now has her best friend with her, which is sad but brings both Rebecca’s parents and Ken and I some comfort. Rebecca and Ashley were inseparable in the hospital. The nurse’s always knew if they were coming in at the same time to have chemo to move people around to try and put them together. If they couldn’t pull that off the girls moved poles and food and whatever else to one of the other’s room and had their chemo’s together playing games or whatever craft they were up to. Rebecca was like a little Mom to Ashley. Reminding her she has to take her medicine, or telling her it was time to sleep. Ashley always being the night owl would sometimes exhaust poor Rebecca and she’d say ‘Ashley, sshh, I’m trying to sleep’. Two beautiful little girls now playing in heaven. I know Ashley will have been the one to come and get her and that too brings us comfort.

I’m very thankful that Rebecca was able to have her Wish Trip with the Olsen Twins. Those are memories that Kelly and Rick will hold on to forever. I will hold close the memory of when Danielle and I took her a gift last week. We bought her a charm bracelet and I had fun buying lots of charms to fill it. Most girls get to take time to collect all the different links. Well I knew Rebecca didn’t have that time, so I went a little nuts :-). The most important links that I bought was a Maple Leaf’s charm. Rebecca was a true blue Maple Leaf fan. Another charm was one that said Daddy’s Girl with a heart on it. She was her Daddy’s girl. There was such a special bond between the two just like Ken and Ashley had. The two links that had special meaning to me and for Rebecca were ‘Best Friend’. One was in purple and one was in pink. It was beyond perfect with the colours as well and a special message from Ashley to Rebecca. It was a true joy to give this bracelet to her and she put it on and told me she really really liked it.

Ken and I went to say goodbye to Rebecca and to be with Kelly and Rick. People thought it would be so difficult and it would bring back the memories of our night we lost Ashley. Ken and I cried last night over the loss of Rebecca. Our loss of Ashley is and was our night and last night didn’t bring that back. It was just pure sadness that yet another child was gone and a child that we had a special bond with. So we didn’t re-live Ashley’s final moments, we were just there to try and comfort and to say our goodbyes. There’s the saying that you don’t know unless you’ve been there. There is no way for anyone to know what it is like to lose a child unless they have experienced it. All the children that passed away before Ashley and I cried and had compassion for the families but I truly didn’t have a clue until it had happened to us. It’s all very individual and everyone’s pain is so private that even having experienced it ourselves we know that Kelly and Rick’s pain is there’s and there’s alone.

I’m going to post our favourite picture of Ashley and Rebecca. I’m also going to hunt down any others that I have of the two of them so look for new pictures. I had just posted Camp Pictures yesterday so sorry if you missed yesterday’s post. I’ll repost Camp Pictures sometime later. If anyone wants to send the family a card or anything please e-mail me and I will give you their address. I don’t know the funeral arrangements yet but they live in Brantford. I was just told that Rebecca was on the news today at lunchtime. Our channel 13 which I believe is CKCO. They recaptured some moments of other news clippings Rebecca had done and I believe there’s some fundraising going on to help the family. I’ll hopefully be able to watch it tonight myself and I’ll post any information that may be of interest to you.

So help us to pray for strength for Kelly, Rick, Brittany and Erik and all their family and friends as they now embark on a journey of loss, as we unfortunately know too well.

Bye for now.

Wednesday, September 10, 2003 8:09 AM CDT

So I had an entry to post a while ago and it never got posted. My computer needed to go to the doctor! It was right before school started and I had it down to hours before the kids went to school. Needless to say I’m very happy the kids are back in school. It was one of those summers where we all drove each other nuts. Too much arguing and the kids claimed complete boredom unless we were off and out every single day. The joys of… So it’s been very nice having some structure back in this house.

So I’m going to try and catch you up on where I left off which was way back to Austin’s birthday party. It was very neat seeing Austin running around like a normal 8 year old. He had lots of people there and poor Beth had to run around like a chicken with her head cut off! It was a great success and it was truly great being a part of it. Thank you Austin!! We came home the night of Austin’s party to have Rebecca’s brother dropped off to stay at our house for a few days. Nathan and Erik are nearly the same age so they enjoy spending time together. I need to update on Rebecca… I had lots written before and I held off on posting as well so all of their family knew the news before I told you all. Rebecca was admitted to the hospital with huge amounts of pain in her back and legs. Sometimes in her head. They finally did an MRI and the amount of disease in her little body had them rushing her off to have emergency radiation. They were told this would only be to help control the pain. They were only going to do five days and then that would be it for radiation. They had discussed doing some chemo as well, but that too was only in hopes of bringing her some pain relief. The doctors came and spoke to them and explained that they should reconsider doing any chemo as it would diminish her quality of life and she really only has a few weeks left before her she will succumb to her disease. This is obviously devastating news. Ken and I have been many times to the hospital to try and help in any way we can. Danielle asked repeatedly to go and see her so we finally took her in as well. It was one of those situations where we were trying to protect her but she made the decision herself. She wanted to go and that was it! She noticed that Rebecca was in the same room that Ashley passed away in. I know it was a little difficult for us, but we have managed to overcome that. In a small way maybe it’s befitting that Rebecca is in Ashley’s room. How sad though that two best friends will have earned their Angel wings in the same room.

So Rebecca is now just on pain management which is very difficult on the parents. Ken and I were blessed in our own way that we were told on a Saturday that we only had days with Ashley and by Wed. 2:00 am Ashley had left us. Kelly and Rick have now known this for a few weeks and it is unbearable having to watch your child suffer and know you can do nothing to speed up the outcome and to take all the pain away. We need to pray heavily for their family. On a good note if there is any in this entry, Rebecca had her wish through the Children’s Wish Foundation. She wanted to meet Mary-Kate and Ashley Olsen. Coincidence or not :-), they are filming in Toronto right now. So in just a few days they were able to arrange a meeting with them. The hooked Rebecca up to a pump for her morphine and they set off in a limo for Toronto Sunday morning. Thankfully the pump worked well and she was pain free for this meeting. The twins came down from their hotel and sat in the limo with Rebecca and her Mom and then Rebecca’s siblings came in for a visit as well. I was told they were regular 17 year olds that have been raised beautifully. They were very compassionate and made Rebecca one of the happiest little girls. For that alone there are not enough thanks to them. Rebecca had been given some money for her journey and her instructions a few days before was for her Mom to go and buy her 3 new Mary-Kate and Ashley outfits, new shoes, new PJ’s and 3 new movies and CD’s. All Mary-Kate and Ashley. It was really cute. So she wore one of her new outfits for her special day. It meant the world to the family and it obviously meant something to the twins. They sent flowers to Rebecca at the hospital the next day. So Rebecca hasn’t been told any of this bad news. I think she knows more than we give her credit for but she is still planning for the future. Ken was there visiting Rick when Rebecca was making plans for in a few weeks time. They both had to leave the room to gain their composure. It’s just so hard….

So that’s what we’ve been up to. So many people ask how we manage to be such a big support for them. It’s easy, they need us and we’ll be there. Simple. Is it difficult, of course it is. If Ken and I have learned anything through what we’ve been through it’s to be there for people through thick and thin. Our support group taught us that and that’s what being friends are all about. I wish this little girl who had 95% odds of beating her cancer wasn’t lying in that bed, but again we have no control. I wish no children were in those rooms, but that’s just not the way this world is turning.

I know Beth will update you all soon but I will just let you all know Austin too is back in the hospital. They are trying to figure out what’s going on with him but he needs lots of prayers too. Beth is at the hospital with him so she may be a bit before she updates you all on Austin’s web page.

Rebecca doesn’t have a web page so if anyone wants to send her or the parents any notes of encouragement just e-mail it to me and I’ll make sure they get it.

So other than that the kids are back at school and life is returning to normal. I managed to get through the first day of school. Watching the kids standing at the end of the driveway for the bus, I noticed Ashley was missing, but I got through it. One day at a time, sometimes one hour at a time. :-)

So thanks for checking on us and I’ll keep you all up to date on Rebecca.

Bye for now.

P.S. I’m adding some new pictures from Camp. I have more to add but these will have to do for now as I can only do 3 at a time!

Saturday, August 23, 2003 5:32 PM CDT

Well the week has flown by. Not too many more sleeps before school starts, yay!!! Not too much to tell you about on our end. Wednesday Mairi and I went to the Rotary Members Meeting and what a super bunch of people. We had to get up and present what our plans were and ask their help or input on how to bring about Neuroblastoma Month. We obviously had to introduce ourselves and I did a cover letter that we handed out telling a bit of our stories of our children. It would have been too difficult to actually tell them that especially seeing as it was Ashley’s 9-month anniversary that day. So while Mairi handed out the papers I told them that the cover letter really said everything and we wouldn’t waste too much of their time repeating it. To be quite honest with you, I have absolutely no idea what I said. Mairi joined me and I hope it went well. One of the Chamber of Commerce Members was there also and wants it mailed out to all of their business’s, so hopefully lots of business’s will want to have a ‘Purple Ribbon’ box in their stores in November.

The rest of Wednesday was a blur. It went by so fast. We had Austin’s brother Aaron and his sister Amber come over for a sleep over that afternoon. The boys all set out for Webster’s Falls so I decided we should join them. I was tight for time, which is too bad. The kids could have had a lot more fun there but I needed to get supper on and get ready for Danielle’s soccer game. The one thing I do know is I am way out of shape!! There is a huge set of stairs to get down to the falls and going down I was thinking, man that’s going to be tough getting back up. Well of course I was down there 10 minutes and I had to go the bathroom. I huffed my way back up and then down I went again. Well 20 minutes later we had to leave. I tell you, I was pulling my way up the last stairs! Age is catching up slowly but surely :-).

Danielle’s game was an excellent soccer game. One of Ashley’s nurse’s coaches’s another soccer team. Well it was a very exciting game. Danielle’s team has won every game this season and it was a tied game, which was a nice change. It was a lot of fun as Ashley’s nurse and Ken are both very vocal :-). We went to water Ashley’s flowers after that. They were really dry and I needed to give Ashley more Rainbow flowers. They’re so neat! So there was Ken and I in the dark trying to water her garden :-).

So on a sadder note, I need to ask for tons of prayers for one of Ashley’s best friends, Rebecca. I had stopped by the hospital just to drop something off to Beth and I guess my timing couldn’t have better. Kelly had just come out of the room after hearing that Rebecca’s cancer has rapidly spread. She is full from top to bottom in her bones and it has spread to her lungs and liver. This is devastating news. I wanted to just crumble and bawl. This is just so unfair!!!!! I had taken the kids up with me even though I thought I would only be a minute. I was aware at the same time that I may be putting my kids through something that could potentially be very hard on them. This was the first time they have been back in clinic since Ashley passed away. I’m going to have to keep an eye on Danielle as I think this summer has been especially hard on her. I know she has been missing Ashley. She prays for Rebecca and Austin every night and asks God to find a cure for their cancers. I realized as I was standing there trying to comfort Kelly that Danielle is standing there and Rebecca is in the background lying on the bed sleeping. She would have normally gone over and played with her. She did manage to say hi to her before we left. What would be going on in her mind? I know she must be worried. I wish now they hadn’t been with me, but I can’t change it as we were on our way back from the dentist when I decided to quickly run in to drop something off to Beth. The boys were playing a game with Austin, so they looked quite comfortable there. So Danielle knows Rebecca isn’t feeling well and I told her the Doctors are trying to make her feel better. She’s heard all that before though… So Rebecca went home yesterday. She is in tremendous pain and they called the hospital today and had her admitted. We are going to go and see them tonight and we’ll all have to pray that on Monday they have come up with a plan.

So that’s it for now. Tomorrow I am very pleased to say we have been invited to Austin’s big 8th Birthday!! We are honored to be on his list of people to be invited. This is very monumental and I’m really touched we can be there. Every birthday is a milestone with a child who has cancer, but Austin has been battling for almost 5 years now so it’s an extra extra special day!

Bye for now.

Sunday, August 17, 2003 11:32 PM CDT

I’ve had writers block or whatever we want to call it. Power outages certainly haven’t helped get this entry get posted any sooner either. My moods have swung up and down and all around. So let’s see what I manage to write about…

Camp Trillium was excellent, as usual. The kids all had a fantastic time and I owe big thanks to everyone at Camp Trillium but especially to our ‘special friends’ Steve and Emily. We were greeted at the gates with everyone playing ‘Safari’ animals and they rolled around and pretended to climb the van. It brought smiles to our faces. We settled into our cabin and Rebecca’s family was rooming with us. Austin’s family was in another cabin but we made the best of that by having sleepovers. So on an average day at camp, it goes like this. If the kids wanted to go fishing, their special friends take them at 7:00 am and at 8:00 am there’s a polar dip in the lake. (Certificates are handed out at the end of the week for all the brave children who dunked in the chilly water so early). Breakfast is at 8:30 and then they go off in age groups to do different activities. Everyone meets up again at 10:30 (I think) and the counselors have come up with different ideas of things to do and the kids pick which one they want and off they go. Lunch is at 12:00 and then we get our children back for an hour. It’s amazing how long that hour is!!! Then they head off again with their special friends for the afternoon. They could do whatever they wanted. More fishing, sailing, kayaking, yak boarding, crafts, archery you name it, they could do it. Our last two trips because it had been so dry the lake wasn’t safe (by the Camp’s standards which is stricter than most lakes) so it was really enjoyable to see the kids making full use of the water. Nathan and Derek fished constantly. Derek actually did a fair amount of Yak Boarding with Aaron (Austin’s brother). They played piano out in the lake, which I believe is lining all the boards up and running across them to see who toppled. (By the way the yak board, I hope I’m spelling it right, is like a kayak but easier to get out of). When the afternoon fun was done we would have supper and again for an hour the children would be ours. It’s funny how all of us parents would sit around talking and looking at our watch’s saying only half an hour to go :-). We really do love our children, honest!! Nighttime consisted of the counselors putting on game shows or carnivals etc. Then the camp fire and then kids 10 and over went to kids lounge and the younger ones headed off to bed. Us parents headed off to parents lounge while our children were put to bed for us. We had a curfew of 12:00 and we were entertained at the parents lounge by either games, spa’s, karaoke and the last night was prom night where we were all picked up in our limo (the hay wagon) and we all had to find clothes to wear from the dress up box. Sounds pretty busy hey?? Parents can participate in whatever they want or they can just hang and relax knowing their kids are being looked after.

I didn’t participate too much on the kid’s activities. The one thing I did want to try with the kids was archery. So Beth and I set off with the girls to give it a go. Beth the little monkey had her video camera out and taped my very long ordeal on just trying to get the arrow to stay on! I’m not sure if she eventually got my success or not it took so long :-). I’m sure it will be wobbly to watch too she was laughing so hard. Too bad I didn’t think to grab her camera when she tried! :-)

So that’s our days at camp in a nutshell. The ‘special friends’ deserve awards for patience and creativity and for just downright energy. I would come in at 12:00 and Steve would be sitting there all red eyed and I’d say I was so sorry I kept him up. Nathan and Rebecca’s brother Eric had him up pretty well every morning at 7:00 to go fishing. He’d smile and say it was no problem; he loved doing it and would even stay to chat. To be young again!! I can handle lack of sleep for a few days but not 5 days in a row! They only had 2 days to recuperate before another family camp was to start. Emily had just flown in from Taiwan (?) and had very interesting stories to tell us. So what made this trip even better was having Austin’s family and Rebecca’s family with us. I was feeling a little antisocial, so it was nice to have Beth and Kelly there. Beth had to take Austin to clinic on Monday for more scans and Austin was in a bummer of a mood. He wanted to be back at camp :-). This was Austin and Rebecca’s first trip to camp so it was really nice to see their families so thoroughly enjoying their time at camp. All of our kids get along great so it made it that much more enjoyable for them all. I wrote that we had sleepovers. Ken was only able to come on Saturday night and Sunday later in the day he headed home. We had an extra room in our cabin so the boys slept in that room and we had Amber sleep over one night and then Aaron another and the last night we were going to have Austin over, but all the boys piled over to Beth’s cabin and bunked over there. So even sleeping was fun!

There’s so many more things I could write about. I don’t know if you all remember Ashley’s ‘special friend’ Becka? She was such a blessing to us in the few days before Ashley passed away. We didn’t know when they were introduced that Ashley only had a few days left with us. Ashley loved her to pieces and gave the thumbs up sign that she was a keeper. Becka played a huge part in Ashley’s final days, coming and doing crafts with her and bringing many smiles to her face. Well Becka was at camp this week. So that was a real treat for me. She kept an eye out for me and for that I am thankful. So thank you Becka for all the hugs and for getting to know Ashley’s siblings. I finally had a melt down on the last night there. I knew it was coming. The Goodnight song earlier in the week had brought a tear or two to Beth. She has a picture of Aaron, Derek, Austin and Amber all with their arms around each other swaying to the song. That meant a lot to her especially because Austin had his arm around Amber (which is rare :-)). I saved my boohoo until the Talent Show the last night. I had been having little moments all week but I was so sad that Ashley didn’t have the opportunity to be in the talent show. I could envision Ashley and Danielle getting up and doing a dance seeing as it’s something they both would have loved to do. So with that I told Becka I had to leave and thankfully the kids didn’t see the melt down. I came back later so I could see Amber and Danielle with their ‘special friends’ do this cup thing. I can’t really explain what they were doing other than banging the cup and clapping their hands in between and they go faster and faster. It gives off a really cool beat. The audience was telling them to go faster, so it was pretty neat. I didn’t make it through the Goodnight song that night either. Emily had seen I was having a rough time with it, so she squeezed my shoulder as we sang about needing someone to lean on, you can call my name. Thank you Emily for the squeeze, it meant lots…

So the only other thing that was emotional for not just me but Beth as well, was the ‘No More Chemo’ cake. Camp Trillium celebrates when children are finally off treatment. It’s really awesome and the counselors come marching out singing Happy No More Chemo cake and it’s like getting a birthday cake but so much more monumental. I cried because Ashley had one our first year at camp. Beth’s tears were more personal but suffice it to say well justified as any mother whose child is still on treatment prays for no more chemo. I’m happy to say there were six children who were presented their No More Chemo cakes. For that I am really happy and thankful. As difficult as it is to watch, I hope there’s more every year!

So I did something at camp I have wanted to do for the past two years but haven’t. I knew I was taking my life in my own hands but I went for it. I played hockey with the men at 7:00 am on the last morning. It’s the parents against the counselors. It’s a big deal and through the week they put challenges up and the counselors try and scare us by bringing in someone on a stretcher all bandaged up etc. It’s fun but mostly men! Well Rebecca’s Mom and I decided we would go for it. We got there and I was a little overwhelmed and wondered about my sanity. I don’t even know how to hold a stick properly for crying out loud! The kids had all come along to watch their Mommy and I guess I didn’t do too badly seeing as Derek told me I did good. We won too, which was a good thing seeing as the losers had to put dress’s on and jump in the lake :-).

So that ended our Camp Trillium week. One thing I really need to mention and commend Camp Trillium for is the fact that no one child is extra special there. When families are thrown into the cancer world the child with cancer becomes special no matter which way we twist it. Not in a bad way and it’s never meant to exclude siblings, but it’s just the reality. At camp you typically don’t even know which children have had or have cancer unless there’s something obvious like a baldhead or wheel chairs etc. All the children are treated equal and that’s soooo important for the siblings to finally be treated special too. The fact that Ashley isn’t with us now to go to camp and we are still included means an awful lot too. We haven’t been excluded out of a life that we’re used to being in, it can be our choice when we need to move on. So on those things alone we can’t thank them enough. Of course us parents having a carefree time is pretty big on our list too! :-)

So we ran away the following weekend with Kathy and Paul and the kids to their Uncles house near Godrich. This time Ken was able to join us, which the kids were happy about. We went to the beach one day and then the Rodeo the next. So it was a good weekend, just not long enough.

So it’s a new week and I’ll see what happens. No big plans as of yet. Mairi and I are going on the 20th to pitch our idea again to the Rotary. It’s not lost on me that it’s on the 9 month Anniversary for Ashley. I went to the hospital on Thursday to see Rebecca. Well I actually just had lunch with Kelly as Rebecca was sleeping. They have no idea whether she’s responding to treatment or not and need to do more tests. She’s been complaining of more pain in her head and now her arm, which she banged again a few days ago. We need to pray lots for Rebecca and Austin as they are still doing the big battle. Rebecca came out of the hospital today but hasn’t had the scan she needs yet to determine what her disease is doing. I’m hoping they manage to get that scan done soon!

So we got through the black out well. I hope everyone else did too. I was worried about all the hospitals that would be affected and the elderly. Isn’t it amazing what happens to us and how dependant we are on technology? I don’t seem to be spending as much time in front of the computer lately. That’s probably a good thing. I remember the days of my computer having to go in to get fixed and me saying, it’s like my vehicle, I’m lost without it! I would panic if it was going to take longer than 24 hours. I knew I was over that when the black out happened and it didn’t bother me in the slightest :-).

So we finally made it to church this morning. Not ours unfortunately as we’re out of practice and it was too late to get to ours. We went to the Church whose praise team had so amazingly blessed us by playing at Ashley’s funeral. I knew I wouldn’t get through it without tears, which I didn’t. Accomplishment though, I made it through the whole service. I almost bailed, but I didn’t, so that’s a step in the right direction. It was a really excellent message too. About being Christian’s and what it really means and how it should be our whole life, not play a role in our lives. It was encouragement to not be part time Christian’s and what lessons we’re teaching our children. That’s the message that I took from it anyway. It was a good message…one that I need to start working on…

I’ll leave on that note and hopefully I’ll write sooner next time. Sorry this was chippy choppy writing. It’s been a few days in the works so deleting and adding make it a little harder to read :-)

Bye for now!

Monday, August 11, 2003 10:07 PM CDT

For everyone that’s been waiting for me to post I’m really sorry that I’ve slacked off! I do have lots to write about. We’ve been to Camp Trillium and we ran away with the kids this past weekend with Kathy and Paul. I’m feeling in a bummer of a mood now that I’m home and back to reality. So I’ll write all about in the next few days. I don’t want to take away from the good that all happened with my mood. So I promise soon….

Hopefully tomorrow I’ll feel like writing. Check back :-)

Saturday, July 26, 2003 0:42 AM CDT

As promised I am posting before I go anywhere with pictures! Ken was going to go again tonight and retake them because the sun caused a bit of glare on Ashley’s headstone, but tonight ran away on us.

What have we been up to? The usual with sports. The kids are all doing really well in sports. Nathan has been doing really well considering he’s never played before. Not that he’s an all-star player or anything, we’re just happy he’s consistently hitting the ball. He caught a fly ball the other night and tonight was back catcher and got a boy out on a fluke catch. I love hearing him praised by his team. It’s good for him :-).

As expected when Mairi and I went for lunch, we didn’t accomplish much :-). After lunch we went Ashley shopping and then went to visit her with some new ornaments. She has some really adorable ornaments in her garden right now. If anyone wants to add to them, please feel free. I went there one day this week and bumped into someone who was there to see Ashley and it’s such a neat feeling. I will hear from people that they went to see Ashley just in conversation and it really is such a good feeling to know that people are still visiting her. I know it won’t last forever for some but for now I’ll take it and run with it.

Tuesday I went back to the hospital for the first time since SARS started. I don’t even know how long ago that was now. It seems like forever. Austin was in having a bone marrow biopsy so I took the opportunity to visit while he was in the hospital. It was so good to see everyone again. I even got to see some of the girls down in Nuclear that I haven’t seen since I took them Ashley’s gold pins. In all honesty though I must tell you that this week hasn’t been a good week. I enjoyed seeing everyone and it still feels like the norm being there, but the hurt is starting to settle. Ashley isn’t there getting treatment. My child isn’t one of the children that the doctors are looking after or the nurse’s. There are so many unknown faces. New children with parents that are facing their worst nightmare’s possible. So in reality I guess I am finally moving away from it feeling like going back home. Time is moving on and it’s becoming harder to handle.

I’m feeling in a philosophical mood tonight but I’m going to try not to go there. The camp that the kids have gone to this week is in the college that Ashley’s funeral was held in. The first day was ok driving in, but it hurt. The second day because I felt the melt down coming, really hurt. My steering wheel has bore the brunt as I struggled many times this week with ‘flashbacks’. I still can’t believe that we held a funeral for our child in a college with probably 900 people in attendance. Did that really happen?? I went to go and have a really good melt down on Wed. night and believe me, it’s unbearable what a parent feels in their lowest of lows being in a cemetary with their child buried there. It can look as beautiful as possible, but it doesn’t change the fact that a child is below them and shouldn’t be. Ok I’m getting mushy and bearing my soul. Sorry!

Mairi and I did sort of accomplish something this week. When we met on Monday we decided that we were going to attend Waterdown’s Rotary Membership meeting. This is held every Wed. morning at 7:15 am. Yes you read that right! 7:15am, which for me is like 4:00 am. When the article that was printed a few weeks ago saying that we wanted to make November Neuroblastoma month, Mairi received some calls asking what we were doing and what could they do to help. One of the people who called was a member of the Rotary and wanted us to present to the members to enlist their help. He felt strongly enough about it that he wants the whole community on board. Soooo we went to pitch our idea. What we didn’t know was the speakers were already predetermined and we weren’t able to speak that morning. Oh well, we met some great people and it was very interesting being in on a community meeting. We are now slated to speak at the end of August, as Mairi and I can’t both be there until then. Since then Mairi has been a busy girl. Our idea so far is to sell purple ribbons because that is what the communities will remember thanks to the Janie who started the purple ribbons for Ashley when she was sick. So she found someone to donate the boxes and she has found someone to help make them etc. I vote her president of this club!! She knows how to make things happen. What we do know is there will be a picture of Ashley and Hunter on the box’s to ask people to help make their death’s not in vain. We want to help contribute to research so hopefully one day we can say they have a handle on this disease for other children. Big dreams, high hopes, but who knows!

So other than that it’s just been a blah week. I can’t shake the blues and Ken is beyond buried in things that he has to deal with. It’s after 1:00 and I suppose I should be packing. Nathan has a game at 9:00 and Derek has a practice at 10 and somewhere I should be getting ready to go! I used to be so neat and organized. That’s gone for a pot. My brain is fried. Short-term memory is out the window. Thank goodness for a daytimer otherwise we’d be lost! The kids have learned to check it just to remind us what’s going on in our lives. So I know if it’s important to write it in there and it might actually happen.

I promised the Camp Trillium song so I will put that on this post, just to make it a really long post yet again. I could have yapped forever tonight but I’ll save it for another time… Hopefully by then I’ll be more upbeat. I’m looking forward to one day being able to write the way I used to. Has anyone noticed I haven’t written positively in ages? Incase you have all wondered if I have noticed my writing has changed, yes I have. One day…

Bye for now and enjoy the pictures. They really don’t do it justice. I’m going to post a picture of Danielle and Katie as well with their ‘Ashley’ dance picture. Their holding the plaque that the studio had made for Ashley. It’s a little late in being posted, but that’s just the way my life has been lately :-).

THE GOODNIGHT SONG
(Camp Trillium Lullaby)

When the sun is slowly setting and the moon begins to shine
there's a song that I sing to my friends to keep them feeling fine

good...goodnite to you, the whole night through
may you dream of love, peace and hope, and may all of your dreams come true.

when you need someone to talk to, or you just need someone to hold
now you know you've got someone to turn to, to help keep out the cold

good....goodnight to you, the whole night through
may you dream of love, peace and hope, and may all of your dreams come true

this world's so full of beauty, but this world can still bring us pain
so if you need someone to lean on, you can call...you can call my name
when the sun has long since vanished and the moon lights up the sky
I'll be thinking of all of my friends, as I sing this lullaby

Good...goodnight to you, the whole night through
may you dream of love, peace and hope and may all of your dreams come true
may you dream of love, peace and hope and may all of your dreams come true.

~~~~~Gregg Lawless, 1997~~~~~


You’d really have to hear this song being sung. Everyone moves slowly from side to side as they sing and I said earlier, love, peace but especially hope are emphasized when it’s sung. It’s a beautiful and befitting song for children struggling in this world of cancer. I know Ashley will be in heaven singing with us…

Goodnight to you…

Sunday, July 20, 2003 11:41 PM CDT

Well today marks 8 months since we lost Ashley. It still doesn’t seem possible. Last night before I shut my eyes I had vivid flashbacks, as I’ll call them, of the moments before Ashley passed away. My eyes couldn’t open fast enough. My heart was pounding so fast. I told myself to think of something else and thankfully I was able to. Those flashbacks are so awful. They strike you when you least expect them. Driving, talking, watching TV. Just about anytime, anywhere. Memories are good, flashbacks are painful… Ken was up until dawn broke I believe. We still haven’t spoke of why but I’m sure we all know the answer to that one.

We had some good moments this week. I received more pages for Ashley’s memory book. Shelly they’re beautiful and thank you so much!! One of Ashley’s nurse’s who lives nearby brought hers over the other day. It was so great sitting and spending time with her and her new little baby boy. I’m sure if you have kept up on the journal from the start you would have seen me write about her. She was Ashley’s ‘fart’ nurse. She is the one who bought Ashley her very own remote controlled ‘fart’ machine that she loved to play tricks on the doctors with. Lot of good memories…if anyone else was thinking of doing a memory page and never had a chance; we’ll take them anytime, anyhow. Her birthday night that we had hoped everyone would share a memory with us didn’t turn out so well with the snow storm, so if anyone gets a minute we’d still love them.

We finally got Ashley’s garden planted. Thanks to none other than Kathy again. Having a greenhouse business she was my best helper to see that it gone done right. It was a great day of shopping for just the right flowers and then we took the girls up with us and planted in the afternoon. We weren’t having any luck with the candles that we had bought so we went and bought her a new pink one. The finishing touch on a beautiful tribute to a beautiful little girl. The flowers are just so and we managed to incorporate the few gifts that we and others have taken her. Kathy bought her a beautiful angel holding a bubble. It’s gorgeous. We were going to finish it off today by taking her roses for her vase seeing as today was the 20th. The weather didn’t co-operate. I wanted to go and sit and spend some time up there, and all the rain sort of ruined those plans. I’ll try tomorrow but it looks like rain again. I need the roses in the vase to make it picture perfect. I promise those pictures really soon! The only good thing about all the rain is her flowers are being watered.

I’ve wrote before all the hubbub that happened with using the back of Ashley’s stone and having the other headstone placed smack dab close to hers. Well we’ve been really happy we’ve been able to solve all those problems, but still worried that someone could buy the plot that another headstone would then possibly cover the other side of the back. We knew if that happened we’d have to have her stone moved over again, which the people who placed said they would gladly do if the need ever arises. I was up at the cemetary on Thursday with Shannon’s Mom and there was a funeral happening. Coincidence but it was an older man from our church that was being laid to rest. The lady that we had bought Ashley’s plot from was there and I stopped to say to hi. She knew the dilemma’s we were having and the worries about covering her stone. She told me she has marked on her papers that the plots by the back of Ashley’s stone must be sold as a double plot. This will now eliminate any chance of covering the back of Ashley’s headstone in the future. How cool is that! The things you have to worry about, I tell you!! You want everything just so and have to worry about things that may seem so trivial to others, but huge to us. This nice lady has now taken our last worry away!

So yesterday was Canada’s Wonderland. Ken opted to stay home so he could go to work and do some landscaping around here. I think it would have been really difficult as well seeing as Ken used to take Ashley over to kiddy land while I went off with the older kids. That would have been hard for him. Kathy and her kids came with us and we really had a fantastic day. As the kids have gotten older we are able to enjoy it more and more. Lunchtime was social time. Poor Kathy and the kids had to wait me out as I tried to catch up with people. One family that we had met on original diagnosis was there and their daughter passed away nearly 2 years ago. They didn’t know Ashley had passed away and of course we had too much to talk about in a small amount of time. We saw Rebecca’s family and Austin’s family. Catching up with other families we just never get to see anymore in clinic. So it was a nice lunchtime. Then it was time to hit the rides!! The kids had a great time in the kiddy section. I thought they had gotten too old for that part of the park, but they really enjoyed themselves. I saw a little girl riding a swan that had the exact same hair as Ashley had before she was diagnosed. I thought that would be upsetting but it was just a heart squeeze and I carried on. We spent 3 hours in the water park that the kids came out shivering and went back for more punishment. Then it was time for a few adult rides. Ken doesn’t really do rides so it was nice to be with someone who did. Kathy and I were able to enjoy some adult rides while the kids did a few rides beside where we were. And yes for everyone who was there and heard me talk about doing the Xtreme SkyFlyer, I finally did it! I’ve wanted to do it for years but couldn’t find anyone to do it with. Kathy’s son Steve wanted to do it as well. So we did and Wow! Terrifying and awesome all in one. The view was spectacular. For all my relatives in England, this is a ride that drags you up on cables about 150 ft in the air and your hanging by a body suit and your attached to these cables. Then they drop you and you swing. I did doubt our sanity while we were being dragged up but the view and the thrill were all worth it. Jane, you should have been with us! You would have loved it. We were playing telephone tag trying to set up a time so she could watch. I was trying to convince her to do it! She arrived just in time to watch. Next time Jane!

So we closed the park down and we were all really pleased with what a great day it was. We’re looking forward to next year already. It was a late night and the kids were bagged. A fun bagged. They start their sports camp tomorrow. They have to start getting up early again. They moaned a little at that. I’m sure I’ll be moaning by mid- week :-).

So far all is well for Rebecca’s family and Austin’s family going to Camp Trillium with us. I can’t believe it’s been almost a year since we were there. I’m not going to post the Camp Trillium song yet. I will try and do another post before we leave so I can post those pictures for you. It’s late again, and as usual I found lots to yap about. Thanks for the entries telling me you liked the Waterbug Story. I had a personal e-mail telling me how my entry made it to a family who has recently suffered a loss. Her words were such an encouragement to keep writing. So thank you. Mairi (Hunter’s Mom) and I are going to bang our heads together tomorrow to see what we want to do with November Neuroblastoma Month. Every time we get together we have too much to talk about and accomplish nothing but enjoying each other’s company. We’ll see if tomorrow is more productive :-).

Take care and talk to you soon!

Monday, July 14, 2003 6:48 PM CDT

So what have we been up to? Not a lot really. I did do something I was quite proud of. I registered and gave my blood sample on Monday to see if I was eligible to give my bone marrow to someone. It was so easy. I just went online and called up Bone Marrow Donor info and I filled out the questionnaire. I had to print it, sign it and mail it. Big deal that was. They called me and told me when to come in and that was that. It would be really neat if I was a match for someone who needed a bone marrow transplant. I would love to help possibly give the gift of life to someone. So I’ll wait and see what happens now.

I also went to see the gal that designed Ashley’s headstone. I wanted to get her something to say thank you for the beautiful job she had done and her time and patience. So what did I get her? A cute little angel with curls. She had a smirk too! She didn’t know Ashley but I wanted her to know I’m sure Ashley appreciated it too.

Derek was gone all week and it was weird only having 2 kids running around here. At times we just had Nathan while Danielle was off at birthday parties. We were busy all weekend which helped us get through another weekend. We’re usually pretty happy when the weekends are done.

I’m sitting here realizing I really don’t have too much of importance to tell you. We’re off on Saturday to Canada’s Wonderland with Help A Child Smile. The kids look forward to that every year. This year Kathy and Paul are coming with us. It’s a time for us to catch up with people we haven’t seen in a while. Next week the kids are in a sports camp, which will make my life a lot easier during the day. I can go to work and not have to worry about them.

So we’re managing to keep busy. Too busy really. When do we get to sit and wallow?? The 20th of this month will already mark 8 months since we lost Ashley. I can’t believe it’s been that long already. I feel like Ken and I really haven’t stopped since and I don’t know if that’s a good thing or a bad thing. We joined a grieving group a while ago for parents who have lost their children to cancer. I see so many of them writing that it took them up to 2 years for the reality to sink and then they fell apart. I really wish no parents ever had to endure this. Functioning doesn’t seem right. You feel guilty for that. I know Ashley wouldn’t want us crying all the time anyway, but it just feels wrong that we have been so wrapped up in our lives and the things that keep us busy that we don’t grieve more. Does any of this make sense?

We lit Ashley’s candle a week ago Sunday. We pulled back in that night and it was just the neatest feeling. She was the only one lit up in the whole cemetery! I know her candles probably burnt out by now so I need to go tonight and change her candle. You wonder, can she see it? Does it make her smile? If only we could glimpse into heaven and see our children playing and being happy. Would it help? Probably not because we’d just want to bring them home. I hope Martina won’t mind but I’m so proud of them and Ashley that I want to share this with you. I got an e-mail from the wonderful lady who regularly leaves us poems or guestbook entries. This was a lady that Ashley had never met. She has been reading Ashley’s journal faithfully and has brought so many happy smiles and proud tears our way. Well she and her husband went to see Ashley’s new headstone. She left Ashley a gift of two beautiful butterflies. Ashley and I had a thing about butterflies and Martina knew this. What was even more meaningful than that were the words she wrote to me after visiting Ashley. Her and her husband wrote how unbelievable it was that this child has touched their hearts so. That’s just too beautiful that Ashley has impacted the lives of peoples she didn’t get the chance to meet. So thank you Martina (and hubby :-)) for bringing Ashley into your hearts and taking it as far as wanting to visit her and bring her gifts! It means more than I can even express in words…

So for somebody who had nothing to talk about I guess I didn’t do bad. I’ll let you know how it goes at Canada’s Wonderland. We leave a week Saturday for Camp Trillium and I am looking forward to it and dreading it at the same time. We all sit around the campfire at night and sing their Camp Trillium Lullaby. I wish you could hear it being sung. It’s beautiful. I will actually post the words for you on my next post. It has the words in the chorus about Peace, Love and Hope and all three words are usually very emphasized when being sung. Ashley loved singing that song and it will be difficult. May have to skip the first nights singing, we’ll see…

By the way I found the drangon fly story I was telling you about in my last post. Actually it’s called the Waterbug Story. I’ll end this post with that story.

Bye for now.


The Water Bug Story


Down below the surface of a quiet pond lived a little colony of water bugs. They were a happy colony, living far away from the sun. For many months they were very busy, scurrying over the soft mud on the bottom of the pond. They did notice that every once in a while one of their colony seemed to lose interest in going about with its friends. Clinging to the stem of a pond lily, it gradually moved out of sight and was seen no more.

"Look!" said one of the water bugs to another, "One of our colony is climbing up the lily stalk. Where do you think she's going?" Up, up, up it slowly went... Even as they watched, the water bug disappeared from sight. Its friends waited and waited but it didn't return...

"That's funny!" said one water bug to another... " Wasn't she happy here?" asked a second... "Where do you suppose she went?" wondered a third... No one had an answer. They were greatly puzzled.

Finally one of the water bugs gathered its friends together. "I have an idea. The next one of us who climbs up the lily stalk must promise to come back and tell us where he or she went and why." "We promise" they said solemnly.

One spring day not long after the very water bug who had suggested the plan found himself climbing up the lily stalk. Up, up, up he went. Before he knew what was happening, he had broken through the surface of the water and fallen into the broad and free lily pad above.

When he awoke, he looked about with surprise. He couldn't believe what he saw. A startling change had come over his old body. His movement revealed four silver wings and a long tail. Even as he struggled, he felt an impulse to move his wings... The warmth of the sun soon dried the moisture from his new body. He moved his wings again and suddenly found himself above the water.

He had become a dragonfly. Swooping and dipping in great curves, he flew through the air. He felt exhilarated in the new atmosphere.
By and by the new dragonfly landed happily on a lily pad to rest. Then it was that he chanced to look below to the bottom of the pond. Why, he was right above his old friends, the water bugs! There they were scurrying around, just as he had been doing some time before.

Then the dragonfly remembered the promise. without thinking, the dragonfly darted down. Suddenly he hit the surface of the water and bounced away. Now that he was a dragonfly, he could no longer go into the water...
"I can't return!" he said in dismay. "At least I tried. But I can't keep my promise. Even if I could go back, not one of the water bugs would know me in my new body. I guess I'll just have to wait until they become dragonflies too. Then they'll understand what has happened to me, and where I went."

And the dragonfly winged off happily into its wonderful new world of sun and air...

Dear God, please remember my loved one who has left the pond we live in...and remember me...

Saturday, July 5, 2003 0:43 AM CDT

This post will hopefully be a little more upbeat than the last one! Beth and I decided to go to Chicago for the Neuroblastoma Conference. We drove this year instead of flying and it wasn’t too bad of a drive. Hit, we felt like, a mini tornado just the other side of London, got stopped at the border for a random search (yay) and had miles and miles of construction in the pouring rain, but other than that an uneventful drive :-). Before we left Beth and I stopped to clean up Ashley’s spot and I felt much better after. We bought her a few things at the duty free shop and I still need to go and take them. We were quite happy with our finds! They’d better not get stolen when I do leave them!!!

We forgot that there’s an hour difference in Chicago so that was to our advantage seeing as we pulled in around 11:30 at night (our time) and I was in need of alcohol after that drive :-). So we hit the bar around 11:00 Chicago time hoping to see someone from last year. Little did we know they were in another bar and we all missed each other. Friday there were very well renound doctors speaking, one of them Dr. Maris who treated both Ashley and Austin with his high dose MIBG therapy. He spoke about how trials work and why we need children enrolled in them etc. I skipped most of the afternoon speakers as one of them was about palliative care and when to decide enough’s enough with your child’s treatment. They also spoke about pain management to get them through their final days, so obviously that wasn’t going to be a good listen for me. I was told it was very emotional but very informative. The depressing part of this whole conference is that the doctors are still very stumped over this disease and the complexity of it. Stage IV’s with a bad histology still have a very low rate of survival. It’s upsetting to know that most of the parents that attended the conference are stage IV parents and they left knowing that one day the information from the doctor that spoke of palliative care may have to be used on their very own child. There are families that actually talk about ‘when my child relapse’s’. How sad is that? That doesn’t mean that all the NB children will pass away or relapse, just a large number due to the lack of knowledge on the doctors part as to what will work to CURE, not buy time. It means lots of dollars still needing to be spent on research and many many trials still need to be done. I’ve explained the Phase I and the Phase II and Phase III trials before so I won’t bore you with that, but needless to say they still have a long way to go with this disease.

We were fortunate enough to spend Friday night with some other NB families and even one of the doctors that attended from Florida. It was all very interesting and definitely not the conversations that you would find at your normal tables sitting having a drink. If anyone had been trying to overhear what we were talking about it would have totally confused them. It is amazing the knowledge that we as parents have had to learn and the discussions that we can hold with a doctor and each other for hours on end. What’s also scary is that in reality we know so little in comparison to what the doctors have in their heads. The gal who put this conference together lost her son 4 years ago to NB. This is one of the ways she is trying to change NB. To bring parents and doctors all together to gain input from each other. It’s an excellent source of information really from both parties as doctors too can learn from us on some issues. Thank you Pat!! She gained a standing ovation from all who attended and it was a well-deserved thank you.

Saturday, when it was time to leave, we stood yapping forever with other families mostly from Canada. Beth and I were the only Canadian’s there last year and this year I think there was 11. Beth was worried a few times if talking non stop NB would be overwhelming or too emotional for me, but this conference spoke to me. Lots of people asked me before I left why I would still want to go. I came up with whatever reason sounded good at the time. Well after sitting there through the weekend, I have realized why I really wanted to go and probably why I was meant to be there. I talked before about Hunter’s Mom and I hopefully making November Neuroblastoma Month. I realized as I sat and listened to everyone and everything that there needs to be more awareness made of this disease. I don’t know if I will be able to pull any of this off, but I thought with the on-line NB group, if most from the group were able to do something from where ever they live in the month of November we could actually start bringing more awareness all over the world. It wouldn’t be a huge time commitment if it was only one month and it wouldn’t need to be big. Just something. Big dollars would be great to send directly to research but awareness is a huge step too. With more awareness there would hopefully be more dollars in the future. Big dreams of making Neuroblastoma as big as Leukemia one day! So, I took from this conference the need to keep up to speed on what’s going on and hopefully one day being able to put it to good use and help advocate for Neuroblastoma. I hope my feelings for this won’t diminish as time goes on but grow stronger. I’ll guess I’ll just have to take it as it comes and see if my strength holds up to it.

So what else have we been up to?? Ken and our lives have been far from dull and I’ll probably write more about that in a few weeks as we struggle through more burdens that sometime seem too much to bare. Derek is heading off tomorrow for a week long camp in Peterborough. It’s only a few more weeks before Camp Trillium. We are supposed to cabin with Austin’s family and Rebecca’s family. Wouldn’t that be neat if they all actually make it and we spend 4 days relaxing with each other. It will be the first for both Rebecca and Austin so I hope they make it. We’ll have to wait and see as we all know what can happen. Last years trip for us was riddled with complications as Ashley was sick and in the hospital and my mother ended up in the hospital too. It will also be very emotional going without Ashley. I guess we’ll take that as it comes too…

I just found out yesterday that Ashley’s lantern and vase that I ordered are in and have been mounted. I haven’t had a chance to go and see it yet as our lives have just been stupid, but I’m hoping to go this weekend. The lantern will hold a candle that will burn for 6 – 7 days. Won’t that just be so cool, to see a light burning all the time. She’s close enough to the road that we’ll see her light when we drive by! Everyone that has gone to see her headstone has absolutely loved it and now that the lantern and vase are in I am more anxious to get a picture posted for you. I haven’t even had time to plant her garden yet!! What a bad Mommy I am!

I was able to go to McMaster last week for the Memorial Service. Ken was feeling too emotional to go, but I was feeling strong enough to solo it. I actually was doing quite well up until we had to go down and light a candle in memory of our lost child. Thank goodness I was near the end. I managed to compose myself by then. They also gave us a dragon fly pin, which is from a dragon fly story that was really beautiful. I know I have it somewhere and if I find it I’ll post it. There were three or four nurses that came down from the ward and it was great seeing them again. Jane (the social worker) and I didn’t get to yap for long but hopefully we’ll fix that with a lunch soon. The nurse’s told me that the nurse’s working upstairs were hoping I would stop and see them before I left. So I did and it was so good seeing them again. I still feel like their so much a part of me. They are such special people. I could have yapped for hours but I’m always aware that their working and I’m stealing them from little ones who need them. Too bad we can’t all meet and yap in off hours!!

So I’m back at work and things are crazy, so I’m sorry it’s taken so long to post. I started this entry on Sunday night and took me until tonight to get it done. I’m sure I could have yapped about lots more, but it’s nearly 2:00 am and I really should get to bed. Thank you to all of you that have e-mailed me with words of encouragement to keep writing and prayers that are continually being sent our way. They are so sincerely appreciated. I still struggle with do I keep writing and how long will people want to read. So thanks for keeping me up when I’m feeling down.

As I struggle with feelings that God has taken more than he should and piled too much on us, I still know that the poem Footprints is the reality. I know he is carrying us and that his footprints are behind us. I just struggle with looking back at those footprints right now and your prayers are keeping us afloat. I will mend that bridge with God one day soon I hope and I know it will be with all of your help as you have all continued to do in the past… so thank you….

Bye for now.

Tuesday, June 24, 2003 8:46 PM CDT

I had a written an entry last night and it needed to be fixed. There’s depressing and then there’s what I wrote last night! I was in a real bummer and I managed to snap out of it this afternoon. I really haven’t been my usual self since last week. Here’s most of what I wrote last night minus a little :-).

Life has been a bit emotional around here the last week or so. Monday I got a call from the people who were supposed to pour the extra foundation for Ashley this week. They had done it while I was in Philadelphia. So I called the people who made Ashley’s headstone to let them know it was ready when they were. They called me a few hours later to tell me they were on their way to put it in. I wasn’t ready for that! The lantern and the vase that I ordered for Ashley still aren’t in but they wanted to put it up anyway. Ken went down there to tell them exactly where he wanted it seeing as the foundation was bigger now, and when he got there it was already placed and they were gone. He told me he was in awe. His saving grace of an emotional breakdown was the husband of the lady who is buried in front of Ashley was there and they chatted for over an hour. I couldn’t go… It’s just too final. Ken took Danielle and Nathan that night but Derek wasn’t up to it either.

I took some time on Tuesday to go by myself and it really is breathtaking. Everything Ken and I had hoped for and probably more. You can see her picture on the back of the headstone as you drive in and that makes us extremely happy. The poem on the back is truly fitting and it makes you pause and read before going to the front. The front has a little Precious Moment Angel holding another picture of Ashley. It is a beautiful tribute to a wonderful and loving daughter and sister. It was so emotional though. Tears just don’t even express the deep loss and finality when a headstone is placed on a child’s resting place. I still can’t bare the thought that she is physically buried and that her soul is happy and carefree in heaven. I can’t seem to shake the loss and grief this week.

When I was there I realized that some of Ashley’s things were missing. The wind chime that I had bought her for her birthday was gone and so was a little purple bear with angel wings that Kathy had bought her. I actually bawled that somebody could be so heartless. It was a horrible feeling that somebody could be so cruel when it was obvious it was a child buried there. Not that it would be any more understandable for any age, but to know that it was a child’s spot, you have to be completely heartless! I bought her another wind chime in Philadelphia, so I still need to take that and hopefully it will stay this time!

So a while ago I wrote about how Hunter’s Mom and I had gone for lunch and we spoke for a minute about how it would be nice to make November Neuroblastoma month. Well while I was gone in Philadelphia a gal from the Flamborough Post contacted Mairi and was asking her all about it. We hadn’t even discussed what we were doing yet, but through the article that was written that week, I guess there are people interested in making that a reality. So as Mairi said ‘our kids have plans for us’ :-). So sometime in the near future we need to decide what we’re doing with that. Our main goal is to raise money to send directly to Neuroblastoma research. We’ll see what happens…

Ken and I have the McMaster Memorial Service tomorrow night. We’ll see how we get through that. Ashley’s 7-month anniversary was on the 20th. I have found it too difficult to even go and see her since last Tuesday. I need to plant a garden and bring home things she doesn’t need there anymore. I just haven’t been able to do it. I actually drove home a different way from work the other day just knowing I wouldn’t make it past her without falling apart.

So Derek and Danielle were done school last Wednesday. Nathan still had to go to school on Thursday. So they’ve all been off school since Friday. Summer seems so long right now. Trying to find the oomph all day now instead of only from when they come home from school is hard. So our summer has begun and I guess we’ll see where it takes us.

I haven’t updated about Rebecca in a while. She is doing fairly well. She had the ICE chemo that Ashley had and it was successful in getting rid of the cancer behind her eye and in her arm, but they found another spot in her back. It’s not big but they stopped the ICE. They now have her on Gleevac and I’m not sure if I ever spoke of that drug when they offered it for Ashley. For Ashley it was considered a last resort, as they don’t have the data on a lot of cancers for this drug. It has been quite successful with a few, so I am hopeful that will be the case for little Rebecca as well. Austin is doing good as usual and it’s just waiting for his counts to drop, recover and then re-scan. It will be a long 6 weeks for Beth and her family to know the outcome from their trip to Philadelphia.

Beth and I were and still possibly are going to Chicago the end of this week. Last year we went to a Neuroblastoma Conference there and it was very instrumental in Ashley having the MIBG Treatment. It was very informative and really great to be in a room full of other NB parents. This year is obviously very different for me, but the gal who has organized it also lost her child. I am looking forward to seeing her again. We’ll know in a day or so if we’re going. Ken and I have a lot going on here personally and Beth is obviously concerned about being away from Austin while his counts are dropping. So we'll see...

When Ashley’s lantern and vase come in we’ll take a picture and post it. We’re trying to figure out what time of the day the stone looks more purple. You can see the purple hew to it but only when you’re up close. It mostly looks gray. It really is beautiful though and I will look forward to posting pictures for you.

Take care and thanks for checking up on us…

Sunday, June 15, 2003 8:45 PM CDT

HAPPY FATHERS DAY KEN!!!


Well Ken and the kids have survived having no Mommy for 6 days. It was a long drive home and the first thing I wanted to do was clean my license plates! There were a lot of bugs that lost their lives on the way home from Philadelphia :-). I also have wanted to just sit and cry. Reality has hit me now that I’m home again. A feeling of this can’t be real. How many times have I written that in the last 6 months? I hear myself in conversations talking about Ashley in the present tense and past tense. I definitely notice when I do either. Neither feels right really. Present tense makes me feel as if she’s still here with us but I think others will notice and think I don’t notice I’m talking like that. Past tense just doesn’t feel right but I know that’s the direction we will be taking sooner or later. It’s just not fair either way.

So the last few days of Philadelphia were very uneventful. I managed to go and visit Tom at the restaurant who gave Ashley the bear. He’s such a sweetie. He had brought a bear for Austin. I would have loved for them to have met seeing as he never had the opportunity to meet Ashley. We have a picture of Austin holding his new bear though and Beth or I will send it to him. Friday night we ventured to the other end of the city for dinner. Part of the city that I had been lost in before, but we stayed in the good part of that end. It was nice to sit and enjoy time with all 3 of us. It was even nicer seeing Austin free from his boredom. The MIBG isn’t painful, but boredom and isolation is definitely an issue.

The drive home was long but we all arrived safe and sound. I came home with a souvenir from the states. Just realized it today when my brother and I were washing the van. A cracked windshield. Shortly after crossing the border on Monday morning I had a stone flung from a truck ahead and I remember thinking I can’t believe that didn’t shatter my windshield. I couldn’t see any damage and thought, wow, I lucked out. No such luck. It was down in the bottom of my windshield and has cracked all across the whole bottom. Drag! So other than that, the bugs are gone and we have managed to get through today. I will end this entry with a poem for Ken. This is a poem again written by the wonderful lady Kaye who wrote the poem a few months ago for Ashley.


My Dad is a Survivor

My dad is a survivor too...
which is no surprise to me.
He's always been like a lighthouse
that helps you cross a stormy sea.
But, I walk with my dad each day
to lift him when he's down.
I wipe the tears he hides from others.
He cries when no one's around.
I watch him sit up late at night,
with my picture in his hand.
He cries as he tries to grieve alone,
and wishes he could understand.
My dad is like a tower of strength.
He's the greatest of them all~!
But there's times when he needs to cry...
Please be there when he falls.
Hold his hand or pat his shoulder...
and tell him it's okay.
Be his strength when he's sad,
Help him mourn in his own way.
Now, as I watch over my precious dad
from the Heaven's up above...
I'm so proud that he's a survivor...
And, I can still feel his love~!


Written by Kaye Des'Ormeaux
October 16, 1998
Dedicated to any man who has lost his child~!



Bye for now. By the way, thank you to everyone who has written such beautiful comments in the guest book. They really help keep us motivated to keep writing. :-)

Thursday, June 12, 2003 0:16 AM CDT

I’m here safe and sound! Took about 7 hours as I expected. I will definately look forward to having company on the drive home. Seven hours is a bit long to entertain yourself. Oh ya, what a great way to start my drive. Speed blitz happening 15 minutes into my trip and I got a speeding ticket! My first one in forever. Figures. They were pulling people over left, right and center. Too bad I was one of them! I was hoping that wouldn’t be the start of a bad drive.

My drive here was very uneventful until I reached Philadelphia. I enjoyed the scenery. It was actually at times a very breathtaking view. I don’t know what happened to Map Quest but they don’t seem to know the streets of Philadelphia very well. I followed the directions exactly and ended up in the wrong end of Philly. Not a good thing! Ended up being in a bit of a scarey neighborhood. Pulled out a map and was completely baffled because of all the one way streets on how to get back to where I needed to be. Beth called me and go figure, she gives me directions to where I’m supposed to be. She had stayed downtown with her family and was familiar with where I had gotten lost. So after a 45 minute detour I checked into the Ronald McDonald House.

All is going well here as Beth has already been telling you in her guest book entries. Austin has been a real trooper. I won’t go into everything that he’s been doing and all the cute things that are going on in the room until after Beth has had a chance to post. Tuesday was a long day for them and Wednesday (today) flew by. I can’t believe it’s already 1:30 am.

I really should go to bed. Just wanted to let everyone know all’s well. Today was actually such a good day I actually forgot to call home. Bad me! It was after 11 before I knew it and I said to Beth I couldn’t believe it was that time and a whole day had gone by without talking to my kids. Oh well, I’m sure they’ll survive. :-)

I’m not sure if way back yonder to our Philadelphia days with Ashley if I wrote about meeting a really nice man who after hearing about Ashley wanted to do something for her. I can’t be bothered to look back and see if I had wrote about it so bare with me if this is a repeat. There was a waiter at a restaurant that we went to one night (Ashley’s radiation level had dropped below 7 so she was playing with a child life worker). Anyway at this restaurant this man was nicely asking us what brought us to Philly. We told him about Ashley and he was telling us he actually worked at United Airlines as well. He had kids on their Wish Trips come through for tours before they boarded the plane. He told us about the bear’s that all the kids got from the airline. He asked whether he could send Ashley one, so we gave him our address. Didn’t this very thoughtful man send it within a few weeks. Ashley was just starting some sad moods and just not knowing how to control her emotions and she would cry at the drop of a hat. When her bear came in we were so excited to give it to her. What a cool bear he was. A bear wearing a leather coat, scarf, goggles and leather hat. He was just awesome! We told Ashley who had sent it and why and she stood on the stairs clutching this bear and started to cry. She was so happy that this man had done this for her that she just didn’t know how to react so she cried. She clutched her bear to sleep and he went with us when we went back to the hospital. We were incredibly touched that he followed through and cared enough to send this bear to a child he hadn’t even met.

It took me months to e-mail this man to say thank you and to let him know Ashley had passed away. He was very sad. He told us next time we were in Philly to look him up. He feels touched by Ashley’s story and life. Well low and behold here I am in Philly again. So I have brought him a framed picture of Ashley (our only way of saying thank you to him for his thoughtfulness) and I will hopefully catch up to him tomorrow to say a personal thank you.

So hopefully we’ll be home on the weekend. I have dared the drive to the hospital. It is very simple but at first a little overwhelming. I’ve figured out my small little driving radius. I really was looking forward to the walking that I would be doing, but the drive is like 4 minutes and the walk about 15 - 20. Hmmm, which sounds better :-). I’ve taken the lazy way out so far. Maybe tomorrow I’ll do some walking. That’s the one thing I like about cities. The walking is a normal daily routine and you soon get used to it. Us country people just aren’t used to that.

I’m endlessly yapping. I’ll stop now. I miss everyone. Derek, Danielle, Nathan and Ken sending you all big hugs and kiss’s. XOXOXOXO Kathy, we will catch up soon. This telephone tag is driving me nuts. I promise to call you all tomorrow! By the way people here think we have accents. Canadians accents eh??? :-) I don’t think so....

Bye for now...

Sunday, June 8, 2003 10:27 PM CDT

Ok so obviously I didn’t get around to posting any new pictures this week. Sorry!! I will try and do that when I get back from Philadelphia. I am going to try and post the picture of our license plate from the paper as the Review doesn’t have their web site up and running yet and I had a few e-mails asking for their web page. By the way a very huge thank you again to the Flamborough Review for helping us to remember our babe. It’s really awesome that they took this opportunity to remind everyone about Ashley.

I’m just going to do a quick entry (ya right!!) and tell you the few things we did get up to this week. First off we were up to no good again. It’s amazing what happens when your brain goes and you decide to see where it leads you. Ken and I were obviously a little upset that the back of Ashley’s headstone would be covered, so we decided we should at least talk to someone there about it. We thought if they could just add another 12” to the footing, it would give us enough room so that we could see the back. I called the guy who looks after her cemetary and he was soooo nice and helpful. He said whatever we needed to make us happy he would more than willing do. He was very understanding and we now are having the extra poured on June 24th. The lady designing Ashley’s headstone has never ever heard of this before and can’t believe they’ve been so helpful. She was already impressed that we could use the back of the headstone, which has also very rarely been done as cemeteries now have very strict rules. So she was really impressed that they were doing this for us. A coincidence, I’m sure not, but the gal asked me if we wanted to center the poem we have on the back now. We were already pretty happy with the way it was, but centering would finish it off nicely. We didn’t know this but they had already finished the front and they had started the back the morning I called to let them know they were pouring more for us. So we went in to approve the design with the poem now centered. It does look much better. What we didn’t know was that the only reason the back wasn’t done was the owner had started working on the back and had messed up his template and she hadn’t had time to reprint him a new one. Like I said, coincidence??? With tiny questions and thoughts it’s amazing what we have been able to accomplish. Like I said the lady designing the headstone has learned lots and now knows what she can offer other people at Ashley’s cemetary. So by the end of June all should be well and we can take full pictures for all of you to see to.

So I’ll skip past all the mundane things we did and get right to yesterday. We had our annual ‘Friends’ Golf Tournament. As every year is, it was a blast. Just a pile of friends going out and worrying about a stupid little ball with no other thoughts other than just having a great time. We all bring prizes and we have a potluck later in the night. A good time is always had and we all look forward to the next year. Well our AWESOME group of friends as they have always been, continues to humble us. They gave Ken and I a gift last night. They had all chipped in and bought us a Jap Maple Tree with a bronze plaque that says ‘Ashley Fore-Ever’. Note the Fore spelling. Golf language of course :-). So we will look forward to planting that tree and we were already talking whether to get a small piece of marble like Ashley’s headstone to mount it on or getting a special one made with a light in it. We’ll figure that one out a little later. Is that not just the coolest thing??? Like I said we have the best group of friends and thank you all again soooo much!!!

So I really had better go. I’m trying to finish all the laundry before I head out in the morning and I haven’t even packed yet. Ooops! I’ve talked to Beth and all is well. Austin is doing ok and he gets admitted tomorrow. They will inject the MIBG on Tuesday and we’ll see how long it takes for his radiation levels to come down from there. I am going to try and post when I’m there but hopefully either Beth or I will post and keep you all updated. Send lots of prayers Austin’s way. He needs them big time as his cancer is spreading and the MIBG needs to get in there and blast those nasty Neuroblastoma cells AWAY!!!

Gotta go! Bye for now.

Monday, June 2, 2003 0:26 AM CDT

Just to forewarn you, I think this is going to be a long post. I think this is the longest I have waited to do an entry in a very long time… Not that all of it will interest you :-) but seeing as this is something I can look back on eventually, it’s important for me to try and remember everything.

Way back to last Tuesday (almost two weeks ago now), I had gone to visit Ashley and when I got back Ken told me that the owner of the dance studio had called and told us that Danielle and Katie could perform their ‘Ashley’ dance in the year end recital. Yahoo!! This was very good news for us as we were really hoping the girls could perform with all the lights etc. and it be on the year-end recital video. Memories the two girls can take proudly into adulthood… It was a nice way to end what had been a sad day, Ashley’s 6-month anniversary. I’ve got to come up with a new name for that. Anniversary just doesn’t sound right. I’ll work on that.

So way back to May 21st (Wed.), Kathy’s birthday. I don’t know if you all remember me writing about Shannon the young lady (19) that passed away just before we went to Philadelphia. Well Shannon’s Mom and I went for lunch. It was 3 hours of two Moms’ that totally related to what each other was experiencing yapping away. We were able to share feelings of the loss, and emptiness that we have. They too proudly drive with ‘cool’ license plates. They went ahead and bought the car that Shannon and her sister were supposed to share and Shannon’s sister and Mom now proudly sport license plates with ‘SHAN4EVR’. We had both ordered the license plates without either of us knowing the other had. Too cool!!! Great minds think alike! My birth Mom Jackie and Bud came down that night and then it was off to Kathy’s to celebrate 29 years and holding :-).

Thursday (the 22nd) was my birthday and I actually managed much better than I thought I would. It was busy as usual. Nathan had baseball and Danielle had dance. We had a few people over that night too. Kathy and I sharing our birthday season together makes for a few busy days!!

Saturday the 24th was the tree planting at the dance studio. I had no idea to what extent Dancesation’s had planned for that day. Danielle had to be there for 9:00 for a new dance they were learning and when we got there, there was a big purple sign on the door saying ‘Ashley’s Day’ with pictures and balloons. What a feeling that was. Tears instantly started rolling, but happy tears that we were again bringing Ashley to the forefront and remembering her in such a good way. The hour went like this. Carolyn one of the owners brought everyone there into one of the studios and then told everyone who Ashley was and how much dance was a part of her life. She said everything so well and we were proud to hear in words again how much she has impacted people’s lives. They then presented a plaque that they had made for the studio with Ashley’s picture on it. Ashley’s purple ‘star’ picture that we love so much. So Ashley will have her spot on the dance studio’s wall to be forever remembered. After that we went outside and they had blown up pink and purple balloons for everyone to grab as we went out. Ken dug up the ground for the tree and then we released lots of pink and purple balloons. It was really really neat!! We all piled back in and then the young classes performed their dances. Too cute. It was a bit emotional seeing Ashley’s class do their dance. Little cowboy dresses with white cowboy hats. It would have covered Ashley’s baldhead nicely. They had little horses that they danced with. They got to do both tap and jazz and I know Ashley would have been sooo happy with that. Last year she learned tap and jazz but only performed jazz in the recital. Danielle and Katie finished off the dancing with their ‘Ashley’ dance. Happy Face by Destiny’s Child was the song they danced too. It was really nice and I proudly watched the girls with tears. They finished off the ‘Ashley’s Day’ with a big cake that had pink and purple balloons and a big rainbow across it. Huge thank you’s to Ashley’s dance teacher Corrine for choreographing the girl’s dance and to the studio for remembering Ashley in such a fabulous way. Every time I go to work (it’s around the corner from the studio) I can see Ashley’s Lilac Tree at the dance studio. It’s a pretty neat feeling. We ended that day with a little get together for Kathy and I. So all in all it was a really good day!

Last Monday Ken and I went to finalize Ashley’s headstone. I already mentioned that we were going to use the back of her headstone to write a poem. Well we found out that there is another headstone that will block a portion of the back. The rest of the cemetary has enough distance between headstones that you can run a mower through it. No… not Ashley’s section. That would have been just too easy. They have put the headstones so they are back to back depending on how many plots have been bought. So we were really disappointed with that and the lady doing Ashley’s headstone had to adjust her poem to the left instead of centering it. While we were there we all banged our heads together and finished off the back and we’re about as happy as any parents can be with something they shouldn’t be doing. I’m going to try and arrange for us to go and take a picture before it’s placed. I’m also going to try and see if they can move Ashley’s stone over a bit.

Monday night was pictures at the studio for all the recreation dancers. Danielle needed to go as they were using that night to take pictures for their Step Dance they had been practicing for the recital. We found out when we got there that we could have pictures of Danielle and Katie for their ‘Ashley’ dance. So I raced back home for her costume. Kathy and I were really happy that they were included in the pictures. They took a picture of the two of them holding Ashley’s new plaque. We’re looking forward to seeing that. I’ll make sure to post it when we get it.

Tuesday I got an e-mail from my Aunty Mavis in England. She told me that her niece Lynn had run for Cancer Research and they were allowed to run in memory of someone. Well Lynn picked Ashley. Is that not the coolest thing??? All the way in England someone is proudly representing Ashley. She wore the gold pin that I had sent my Aunt and had Ashley’s name pinned on her shirt. So thank you Lynn!! Across the many miles you have made us very proud.

Last Wednesday Stan and I went to Kitchener for a Memorial night put on by the Hospice workers in Cambridge. These were the wonderful people that would come in and help care for my Mum in her few months at home. I left there sad, but unfortunately still not about my Mum. Don’t get me wrong, I miss her, but the loss of Ashley has totally overpowered the grieving that I should be doing for my Mum. They gave us beautiful butterflies with a card attached and we could write a message to our lost loved one and we hung them from a tree. On my card I wrote to my Mum thanking her and Ashley for teaching us about strength, determination and most of all, love. They were so pretty and I know Ashley loved colorful butterfly’s, so I brought Ashley home a butterfly too.

Ok, I’m almost caught up. Thursday I had an awesome visit from Ashley’s kindergarten teacher. It was so nice to catch up. Thank you Karen!! Friday was my first field trip with the school. Derek and Danielle’s class were going to see the play ‘Charlotte’s Web’ and then to Laser Mania. Well I’m sure you have already figured out why I went. :-) Derek insisted that I come and he really wanted me to play. Twist my arm! We had a blast as usual.

So that finally brings me to this weekend. The dance recital that finishes’s all the hard work that Danielle has put into all her classes. It was absolutely awesome. Their group did great on all their numbers and then Katie and Danielle did their ‘Ashley’ dance. Ashley had also been acknowledged in the program too. The studio helped bring more memories for us and for that we will always be grateful. We are so proud of Danielle and Katie for their extra work that went into putting their dance together. Every time they saw each other it was down to the basement to practice. I told Danielle I had bought her a copy of the recital to keep in her memory box. So today was perfect. The dance recital itself was so well put together and most enjoyable to watch. Well what I saw of it anyway. I have now learned that competitive Mom’s really don’t need to buy a ticket. They really don’t get to see much of the show!! Fast costume changes! I’ve never had this many costumes changes to do in such a small space of time. Danielle had 6 different dances and she was a cow in one of the little kids dances, so it made for a little stress, but we managed it without even raising our voices to each other. Pretty impressive I thought!! We made a good team.

I actually have a fairly uneventful week planned. I am very happy to tell you I get to be in Philadelphia for Austin’s MIBG treatment next week. He is leaving at the end of this week for his consult and then getting admitted next Monday. So I am going to drive down on the Monday June 9th to join them. I am looking forward to being there for whatever Beth and Austin may need me for even if it’s only to fetch coffee and diet coke :-). I have been told I am going to learn all about Pokeman as we wile away the hours waiting for his radiation levels to come down. Ashley used to like playing Pokeman, but I could never remember who was who, so we’ll see how I do. :-)

So I’ll try and post before I go. Thanks for reading…

Bye for now.

P.S. I’ll try and post some new pictures this week too. Hopefully one of Danielle and Katie.

Tuesday, May 20, 2003 5:57 PM CDT

Today is 6 months since Ashley passed away. It hurts to even write that. Reality has been slowly sinking in and life has simply become getting up and functioning. The last few weeks, but especially the last week or so has been really hard. I haven’t even been able to go and visit Ashley as often as I would have liked. Part of that is because they are preparing for her headstone. I know we will be happy when she finally has her marker up but it will be devastating as well. So final… It’s raining today and that suits my mood. Nathan and I are actually home sick today. Derek was nice enough to share a cold he had last week with us. I managed to get it on the weekend and I felt a little better Sunday afternoon and yesterday during the day, but last night it came back with a vengeance. So Nathan and I have just hung out watching movies and vegging. Nathan’s flared up yesterday and with all the coughing he was doing I decided he was better off here at home resting.

It’s actually been really hard even looking at Ashley’s pictures or anything of hers. We have surrounded ourselves with Ashley stuff and we won’t change that as we know this is all just a part of what we have to go through and I refuse to try and shut her out so I can get through my days better. She’s a piece of us that we don’t ever want to try and forget and if I hurt when I look at one of her pictures then that’s just my life. I really don’t know how parents ever get over something like this. I do know that it really does just feel like we’re functioning and that’s it. We can laugh and seem to be enjoying life but we both feel so empty. We have three other beautiful children and it’s our responsibility to continue to function for them, but it gets really tough.

We have had some happy moments this week though. We struck ‘gold’ again this week. I found a camera that had broken on us over a year ago. Inside was a full film. I was so excited! I took it in that night and sure enough there was a few pictures of Ashley on the roll. It was from Halloween of 2001. Ashley had just started back on treatment and I know her hair was starting to fall out but you can’t see that from the pictures. Just Ashley dressed as a Princess with those awesome smiles she always had. I’ll try and post them with this entry. It also had Nathan’s 7th birthday in the December, which I’m sure he’ll be glad we found. Ashley was bald by then and the picture’s started to go funny as our camera was starting to break so unfortunately some of those picture’s with Nathan and Ashley didn’t turn out very well. What a find though! As tough as it’s been to look at them I have proudly showed them off. Friday night we had Rebecca’s family come over for a visit. Rebecca actually managed to get through her chemo without a neutropenic fever so that was good. We had a great visit and I had her sit at the computer and pick some picture’s she would like me to print of Ashley for her. So she was happy with that. Danielle and her cousin Hayley also sat with her and picked some picture’s they would like, so the printer was very busy!

Ken and our date didn’t go quite as planned on Saturday night with me feeling yucky. We finally went for dinner around 9:00 at night and even then I wasn’t sure if I was up to eating. It was nice to get out for that hour though.

Sunday Beth and I had an afternoon planned in Hamilton with a family from Pembroke (near Ottawa). This family has a little boy named Ayden that was diagnosed at 4 weeks old with Neuroblastoma Stage II. He’s now 18 months old and I could just gobble him up he’s so cute. He has two older brothers and their Mom found Austin’s web site after Ayden was diagnosed. She has since kept up with Austin’s journey and through Austin’s web site, Ashley’s journey. She wrote us a while ago and said she would be in town and would we like to meet. It was a really awesome afternoon and we all thoroughly enjoyed bringing all the kids to a park and sitting and chatting while they played. Ayden’s Mom brought both Beth and I a gift. It’s hard to explain but it’s a plaque of wood with Ashley’s picture etched on it. It’s really cool and it says over her picture ‘Heaven’s Precious Angel’ and has her name and date below her picture. Thank you Josie so much for that gift! It’s very very special. Austin’s was done with his picture and has a poem under his name. Isn’t it amazing that Beth and I were able to meet someone who knew of us just through the computer and cared enough to want to meet with us? Technology has certainly brought us all wonderful gifts. If you want to see cute little Ayden his web page is www.caringbridge.org/canada/ayden


So yesterday I braved taking 7 kids to the movie theatre. I survived that too and actually enjoyed the break of sitting with brainless time for the hour and a half. The kids are getting older now so the movies are a little more interesting to see. We seem to be getting away from all the animated films now. This week already seems to be flying by. With a wasted day today I’m sure it will be the weekend before I know it. My birth Mom Jackie is coming tomorrow night and I’m sure we’ll keep her busy as our lives tend to be. We’ll go to see Kathy tomorrow night for her birthday. I’m hoping I don’t have to cook on my birthday the next day :-) and then Friday night Ken and I are getting together with Hunter’s parents. Saturday is the tree planting for Ashley at the dance studio and then Kathy and I are having our party Saturday night. So busy as usual…. Danielle and Katie have been practicing their dance and I think they have it down pat. We’ll see it on Saturday I guess. We’re looking forward to that.

I have something pretty neat to tell you. I had a call from the Flamborough Review today. They heard I have ‘cool’ license plates :-) and want a picture of them. I thought that was pretty neat and I will gladly show off my license plates to the paper! I guess I’d better get the van cleaned now :-).

So that’s about it. Thanks for continuing to check up on us. Hunter’s Mom warned me that my birthday would be hard. We’ll have to see how it goes. I told you I wanted to skip May but nobody listened to me!! :-)

Bye for now.

Tuesday, May 13, 2003 10:15 PM CDT

So we survived Mother’s Day. We took my mother and Ashley some silk flowers. The kids were a little disgruntled that we didn’t have a fun filled day planned for them. They kept saying, but isn’t so and so coming over, or let’s go and see so and so. They ended up having a fun afternoon anyway and they were all ok to go and visit Grandma and Ashley first.

The afternoon brought us buckets of mud into the house. After all the rain that we’ve had, the kids managed to find all the mud and trail it through the house. Their running shoes (they always seem to forget to wear they’re rubber boots!) were covered, clothes that were a whole new colour! I was on strike (being Mother’s Day) and the laundry had to wait. Much to Derek’s frustration who decided after 3 sets of muddy clothes that he really needed his clothes washed, as he now had nothing to wear!

So other than the mud excursion around here, all’s been pretty quiet. Rob and Joyce came for a quick visit on Mother’s Day, which helped to lift our mood. Papa Stan came later in the night and we put him through watching the finale of ‘Survivor’. Yesterday I should have gone to work but I was trying to play catch up around here. Today I will get off my butt and do everything I should have been doing yesterday. I need to get my stickers for my new ‘coolest’ license plate. In my excitement I forgot about that and the night I got it asked Ken to go and put them on. He reminded me I needed to go to the licensing bureau first! I also need a protector on it, as my old license plate is a little mangled. My van is low in the front and it seems to find all new ways to get bent! So somehow I need to protect my ‘Ashley’ license plate.

So Danielle and Katie will begin practicing their dance that they are doing in Memory of Ashley. They are presenting the dance on May 24th at the studio. They have finalized their plan at the studio for Ashley’s Tree Planting. They are planting a Lilac Tree (because it’s purple) and then their having some of the younger girls Ashley’s age do their dances, then Katie and Danielle will dance. Then cake and juice afterwards. It’s really awesome that they’re doing a special Ashley day and we’re very much looking forward to it. It will be emotional I’m sure, but a happy emotional. So they will now be practicing Mondays, Thursdays and Fridays to try and have their dance ready in time. Good thing they’re both quick learners!

This weekend will be our first quiet weekend in what seems like too long. We’re hoping Rebecca’s family will be coming for a visit on Friday night. She’s neutropenic right now so that will obviously be a wait and see visit. If she gets a fever, as we all know, she’s back in hospital. I was able to steal Rebecca for a little while on Saturday. Danielle’s competition was in Brantford where she lives, and we had a big gap between dances, so we visited with Rebecca and her Mom and then I took Rebecca back to watch some dancing. She thoroughly enjoyed it. She’s planning on coming to Danielle’s recital as well and is looking forward to that too. Danielle did well again. I have to try and think now what they all won. I think 3 High Silvers and 2 Gold’s. She missed two days of school last week. She danced in the middle of the day on both days. I didn’t think she would appreciate me sending her to school with curlers :-). So all the competitions are now done and we just have the year-end recital the 1st of June.

Ken and I are hoping to take some ‘us’ time on Saturday night. Dinner we’re hoping and maybe a movie. Derek is now busy with soccer. Saturday he had 2 exhibition games – lost both :-(. Nathan’s team won their first baseball game and he actually hit the ball 3 times and managed to get on base once! We’re thrilled for him. Nathan has fun at whatever he does he’s such an easygoing kid, but it was nice he actually managed ok his very first time playing.

So next week will be busy. My birth mother Jackie is coming down on my birthday and staying for a few days. That will be nice. We haven’t been able to spend any time together in forever. I think Kathy and I are having a party on the Saturday night. We always celebrate together as our birthdays are only 1 day apart.

So that’s about it for now. I’m hoping to post some new pictures, but I have no idea which ones to pick. We’ll have to wait and see :-).

Bye for now.

UPDATE: I wrote this entry this morning and didn’t have time to post it. I managed to do everything I said. I have my new license plates on and I’m absolutely thrilled!!! When I walk up to my van right now I just grin from ear to ear. I’m one proud Mama!! Kathy and I took the girls to the mall tonight and bought them an outfit to wear for their ‘Ashley’ dance. I had hoped we would find something really cute that came in purples and pinks. Nothing stood out in those colours, so they have really pretty peach capri pants and a nice flowing shirt that matches. We’ll post pictures after they dance with them all done up!

Bye again!

Sunday, May 11, 2003 9:37 AM CDT

Good morning Ashley,

Today I needed to talk to you. I have woken up as expected, sad. Your brothers and sister made me breakfast and boy did they do a good job! I think those scrambled eggs were better than mine! Daddy and I have both started our day with tears. We were dressed to go to church and it just couldn’t happen today.

How do we get through today without you and Grandma?? With many tears I’m sure, but we’re planning on going to see Grandma and then we’re coming to see you. My day started out with a special e-mail from a gal that has been reading your web page. She sent a very special mothers day greeting. Thank you Khalita! Grandma Morrow just called me to wish me a Happy Mother’s Day, which was so sweet. Yes today is going to be hard, but we’ll get through it, as we have to get through every day. I had a poem sent by Bugs and Linda a while ago and I thought I would share it with everyone reading. It is written as Mom but the words express so much of what a father experiences too.

My Mom’s A Survivor

My Mom’s a survivor
Or so I’ve heard it said.
But I can hear her crying at night
When all others are in bed.

I watch her lay awake at night
And go to hold her hand.
She doesn’t know I’m with her
To help her understand.

But like the sands on the beach
That never wash away.
I watch over my surviving mom
Who thinks of me each day.

She wears a smile for others
A smile of disguise.
But through heavens doors I see
Tears flowing from her eyes.

My mom tries to cope with death
To keep my memory alive.
But anyone who knows her knows
It is her way to survive.

As I watch over my surviving mom
Through Heavens open door
I try to tell her that angels
Protect me forevermore.

I know that doesn’t help her
Or ease the burden she bares.
So if you get a chance to go visit her
And show her that you care.

For no matter what she says
No matter what she feels.
My surviving mom has a broken heart
That time will never heal.



So my little Ashley, today you are sadly missed. You have 2 brothers and a sister that we will try and put smiles on for. Today is a big day in missing Grandma too. Please give Grandma a really big hug from all of us and I hope you can feel all the hugs we’re sending your way. We love you and miss you….

Love Mommy



P.S. Thank you to everyone who thought about me today. Bugs and Linda, thank you for your Mother’s Day gift. Your toooo sweet and forever thoughtful and caring. What would we do without you! My parting comment is to give your kids and Mom’s a special big hug today. Hug them tight as if you’ll never let them go and tell them how much you love them and what they mean to you.

Love Tricia

Monday, May 5, 2003 10:23 PM CDT

We have survived another weekend and were busy as usual. I have sat down and wondered how on earth I managed to find the time to do all the ‘Mum’ things and be with Ashley when she was sick and be with my Mum when she was sick. Our life still seems so chaotic and we have no hospital stays or clinic visits etc. It’s amazing what can be thrown at you and the ability to cope. It all just comes in different packages…

Derek had tryouts for rep soccer and he made the team. He’s very happy about that as he worried he wouldn’t make it this year. The end of last years soccer season he started complaining of ankle aches and being the responsible parents that we were, told him ‘oh that will go away, you must have just pulled it funny’ :-). This carried on for a while and we were so busy with Ashley, Derek’s ankle problems got put to the back burner. We finally took him in about 2 months ago and then again a few weeks ago as the problem persisted only after playing sports. It turns out he has arch problems and needed special inserts for his shoes. The lady asked him if he got tired easily when he played sports and Derek agreed that yes he does. Ken and Derek actually had that conversation last year as well. Derek complained that his stamina wasn’t up to snuff and Ken told him maybe he had to take up running or something to help with that. It turns out that because of this arch thing, he puts extra stress on his lower leg muscles, hence pain, hence the tired quicker. So to bring what should have been a short story to an end, Derek was worried he wouldn’t make the team because of these problems. He just got his inserts and we’ll see if that helps any.

So Mr. Nathan. Our little man has decided that he doesn’t want to play soccer this year. He wants to try baseball. So Saturday morning Nathan had his first baseball practice. I have heard there are only 10 kids on his team and Nathan has never done more than play in the back yard here and there. This should be interesting :-). Just to let everyone know that he’s still doing well in school. We have a few hyper moments but who doesn’t with an 8-year-old boy. The ‘tics’ have actually been pretty good lately. He had a new ‘tic’ show up that thankfully was very short lived. We knew ‘he’ might not survive it! It was driving us all nuts!! He would start talking in a normal voice and then mid sentence take his tone down to a deep rumble. It was soooo distracting and frustrating. The first time he did it I said ‘what was that!’ he said what? I said that ‘thing’ you just did with your voice. I realized very quickly, oh oh, we’ve got another habit coming. Sure enough, within 24 hours it was pretty obvious it wasn’t a sore throat. As I said, thankfully, that only lasted a few weeks. Derek and Danielle were going to disown him :-). All has been well and to be honest, unless I am being a really bad mother, I haven’t really noticed too much going on. So that’s the exciting saga on our little Nathan. Ken and Nathan were able to spend some quality time together this weekend. Well coffee break times anyway. Ken is attempting some landscaping with our mud bath around the house (go away rain!), Derek was away for the weekend and Danielle and I were at her competition. So Nathan and Daddy were left to their own devices. They survived and most importantly so did the house :-).

Now to our little dancer Danielle. Success again. We spent most of the weekend in Guelph. Katie, Danielle’s biggest dance fan came again to keep us company. Thank you Katie for being such good company while I sit on my butt for hours on end!! :-) Danielle had 5 dances on the weekend. I think they won a silver, 2 gold’s, a Diamond and a Platinum. Not bad eh?? I was telling someone the other day that Danielle has been dancing since she was 3 ½. Not once have I ever heard her say ‘Mum, I don’t feel like going to dance today’. Not once! That’s pretty impressive. Show’s her dedication and love for her dance that’s for sure. That’s what makes it worth all the aggravation of getting up in the wee hours of the morning to go to practices or competitions. Or spending forever on doing hair in curlers with my fingers sticking together from so much hair spray! Kathy and I experienced that on Saturday night. Man was that horrible! Kathy helped me redo her hair for the next day, but I knew I couldn’t get it wet, as the curls wouldn’t work. So we had to redo the curls that already had gunk in them. Yuck! What we do for love…

I guess I’m in the mood for yapping tonight. I realized I have never talked enough about our other children. You all know they mean just as much to us as Ashley, but with all the hubbub I haven’t taken much of an opportunity to let you know more about them. I’ll try and fix that. Their all really great kids and as much as I do all the usual complaining and moaning that all of us parents tend to do, they have weathered a very bad storm. I am really proud of them all for turning out to be really great kids amidst all the turmoil that has surrounded them.

So that leads me to tonight. Ken and I just came back from a ‘Remembrance Night’ that Help A Child Smile put on for the parents that have suffered the loss of a child through cancer. We knew we wanted to go and looked forward to meeting other parents who too have endured this loss, but were a little apprehensive it could prove too emotional. We reunited with many of the parents of the children that I have written about in Ashley’s journal as I had asked you to pray for them on different occasions, Shannon, Tyler and Hunter. Many others that were familiar face’s, but we never had the opportunity to get to know them or their child. One of the lady’s that came from McMaster to be with us, as we stood with lit candles for our children, read the list of children’s names and cried. She said there’s just too many. She is so right. There are just too many. They had a slide show with pictures of our children (thank you Jane, it was beautiful!). We all got to bring remembrance items and talk about our child. I took some nail polish, my little pink bear that is forever with me and Ken took one of Ashley’s albums with pictures. It was a really nice night. Emotional yes, but really nice. There are so many stories; so many children and we’re just such a small group of so many from around the world. I spoke to one Mom whose little girl passed away in ’98 from Neuroblastoma. They too have 4 children almost the same ages. She asked me if it still didn’t seem real. Yes, it still doesn’t seem real. She said it still seems like that for her and it’s almost 5 years. I guess I am destined to stay in the unreal mode as it gets us through our days. One Mom said she knows her daughter is with her always and can feel her always. She is comforted by that and it gives her strength. We still miss Ashley too much. We include her in our day by simply lighting a candle. It’s so not enough…

I’ve been experiencing many flash backs of the time Ashley passed away. They are painful and sometimes joyful. Those sparks of life that were so Ashley. I also remembered the day we came home from Gravenhurst the weekend the clinic Doctor noticed Ashley’s distended stomach. We had to wait until the next day to take her to the hospital. We had family and friends over that night to comfort us in our shock. I remember saying Ashley was a miracle from the beginning. There is no way that God could create and bless us with such a beautiful child, who statistically shouldn’t have been conceived, just to take her from us. I stood firm in that belief. There was obviously a bigger plan. One that even up until hours before she passed, I thought, no way, she can still show them all!

Boy I’m rambling now… I guess what I am trying to say is the good memories and we have so many, are overshadowed with so much hospital stuff. We were so fortunate that our ‘hospital’ times were good too. Not always good, but mostly. Ashley made it so! We have so many happy memories from those times, but when I try and remember pre-cancer, I am blank. When I try and remember all her one- liners that brought tears to our eyes, I am blank. That frustrates me and I am thankful for the many pictures that I will be able to go back on and refresh those memories. If anyone ever thought to themselves when their child did something really cute, and boy I should write that down, do it! I wish I had attached a little book to me. I’m hoping you guys can help me out with that. On Ashley’s birthday we were hoping to have a book full of everyone’s memories. We have received a few, and thank you for those wonderful memories, but we’re hoping there’s still more out there. Just send us a note if you get a chance, if you have any favorite memories. They are precious to us and I know they will help us in the years to come.

Well now that I’ve rambled for so long I won’t be able to post any new pictures up tonight. I will try on my next entry to post a few more. Thanks for the encouraging notes to keep on writing. It really helps to know you all still care to know how we’re doing. We have Mother’s Day next. Another hurdle. Danielle is in her last dance competition this weekend. Actually, Thursday, Friday and Saturday. Thankfully it’s in Brantford this time, so a little closer to home. So May will be difficult. Mother’s day without my little baby will be difficult enough and then my birthday later in the month. I vote we skip May and go straight to June!

On a final happy note. Something I shouldn’t have to be happy about, but am. I got a new license plate in the mail today. Appropriate it’s before Mother’s day. It says ‘ASH4EVER’. We will proudly drive our vehicle around with another expression of our love for our lost little bundle of joy. So keep your eyes pealed for the little white van sporting the coolest plates ever!!

So thanks for listening and I’ll write soon,

Bye for now.

Wednesday, April 30, 2003 9:46 PM CDT

Well I can finally sit down to write to you all about our weekend away. It was actually an emotional roller coaster. I really would have liked to have just ranted and raved about my Great Grandma Rousseau and the great weekend we had but there was so much more emotions involved in this weekend.

It was such an incredible privilege to be a part of the celebration of such a wonderful and caring woman whose life has thankfully spanned 100 years. I have only known this family as I said for about 8 years, but they welcomed me with open arms at our first visit and have always made myself and my family feel unified from the start. That has not changed, more so now with the grief that we have suffered after losing Ashley. They were all so happy to see us and it is a very large family with many generations, so it sometimes gets confusing as to who’s who and where they all fit into the puzzle :-) but it was just great to see everyone again!

So this is how our weekend went. Friday was actually the start for my emotional spurts as I’ll call them. Before I even started to pack I knew this was the first time our family was going away without Ashley. It was a huge void and one I definitely was devastated about. Just before we left I went into Ashley’s room to find something to take with me, anything! I found one of her bracelets that thankfully fit, and opened up one of her boxes to grab a stuffed animal. I know I could have taken Bear but that’s my special bear for at home. I needed something of Ashley’s that would hopefully have an ‘Ashley’ smell. Those ‘things’ had to do, as I couldn’t have what I really wanted and that was our Ashley. She was supposed to be a part of this celebration and as I wrote earlier had looked forward to it. Danielle grabbed her pink ‘remembrance’ bear and we were both on the surface, happy. I’m not sure if I ever told you about the bear’s that Ashley got as a gift from our Dance studio the day before she passed away. The owner and Ashley’s dance teacher came in to see Ashley the day before she passed away and they brought 4 bears. Two blue and two pink. One for each of the kids. Well little Miss Ashley thought they were ALL for her. It was too cute as she tried to cuddle with all four of them. When Ashley passed away, one of the pink bears went with her and the other one’s were given to the kids to know that Ashley has one with her and that it is a connection they will always have. So that is the bear that Danielle grabbed. Very sweet. Derek has even been known to cuddle with his too, but ssshhh, don’t say anything :-).

Friday night I managed a quick hello with my birth Mom Jackie, Stephanie and Adam (my half brother and half sister), Bud (Jackie’s significant other) and some other family members, some that I was meeting for the first time. It was great to see everyone again. Saturday was the big day for Grandma Rousseau. I hadn’t been able to see her yet, and when she walked through the door, honestly, I was in awe. It is such an honour knowing such a wonderful woman who has touched so many lives, but who still looks only 80 if that!!! She looked incredible! It was a busy time and she has actually only met me three times (I think?) so I knew she wouldn’t remember me. When she did realize who I was she was SO happy that I came. I was doing pretty good right up until she said she had wished that she could have been with me when Ashley passed away, but she couldn’t as she too was losing a precious daughter who passed away 3 weeks after Ashley. It was an emotional moment that I will never forget. A bond we as mothers shouldn’t have to share. When it came time to cut the cake I stayed outside. This was something that Ashley was supposed to help her with and I was already too emotional. Ken thankfully didn’t know about the cake part and Ashley’s missing part in it, and he went and got pictures of the cake. He now says he’s glad he didn’t know as he happily took the pictures of a very monumental moment! Guess what Grandma Rousseau’s favorite colour is? Your right, Purple! So the cake was big and purple. There was a speech that was very well done and I learned things that I never knew about her. She was presented with cards from around the world. One from Queen Elizabeth, another from our Prime Minister, and others that I can’t remember off the top of my head. I was impressed that so many important people took the time to acknowledge such an achievement in life.

I was emotionally bummed out so we took it easy for the rest of the day. We had dinner again with Jackie and family, which was most enjoyable. I have to say the kids were absolutely awesome this weekend. Stuck in a car for 5 hours and then trying to entertain themselves all weekend. The really did well. Saturday night I went and sat in the van until the wee hours just to have my sad time. (We were all in the same hotel room and the bathroom is only so comfortable :-)). I found the kids passport pictures that were taken last February just before we went on our cruise in my console. I was thrilled to find them, especially as I was feeling blue. I struck ‘gold’ again. :-)

So Sunday we went to say another Hello and Goodbye to Grandma Rousseau. The woman totally amazes me. She had been to church that morning and again looked just fantastic. We’re going to download our pictures hopefully tonight and I’ll try and post a picture for you. I sure hope I inherited the young looks from this family. Nobody looks they’re age! Grandma Rousseau and I were finally able to sit and have a chat. She showed me the picture of Ashley she has right beside her chair, and it’s the ‘hug’ picture I sent her shortly after I took it. I gave her a booklet of pictures I had printed off the night before we went. Some of our ‘favorite’ Ashley pictures and family shots in the last couple of years and any pictures I had of Grandma Rousseau and the kids. She seemed to like the tape recorder and other family members were thrilled as they too would love to hear her words of wisdom and about the adventures she has lived.

It was again sad to leave. I know I will see Grandma Rousseau again. I think we will all be very blessed to experience many more years with this woman who is still so full of life! She hears great, remembers great, still has lots to talk about and above all that still moves around like a young thing. Yes she has a walker, but get out of her way!

So all in all it was a great weekend to rejoice in life. I was sad we didn’t have Ashley with us, hence the roller coaster. I’m sure it will take a long time to be able to go away as a family and for it to feel ok. All these ‘firsts’ that we have to experience are very difficult. I was glad to be home and light Ashley’s candle by her picture. I was home where my little girl is. I know she’s with me, with us, heart and soul all the time, but I felt like I was leaving her behind. One day I know, time heals…

So that’s about it for now. Danielle’s in another competition this weekend. Guelph this time. So that will keep Danielle and I busy. Ashley’s dance teacher asked last night if Katie and Danielle could start practicing their dance for Ashley this week. They’re very happy to finally be starting that. They’re still a little sad they won’t be able to do their dance on stage with all the lights and a costume and video. We’ll see how it goes….

Thanks for checking in on us. Thanks too for the comments some of you leave us in our guestbook. It helps to keep Ken and I motivated to continue to share…

Bye for now

Wednesday, April 23, 2003 8:26 PM CDT

So we survived Easter, thanks again to Kathy and Paul. With a melt down in full progress and they called and told us we had to go over for supper. Ken and I headed off to the cemetary to put up Ashley’s Easter gifts and when we got there saw purple pansies planted over Ashley in the shape of a heart!! It was awesome. Thank you Kathy!! Thank you both for continuing to hold us up by those armpits. It was a sad day for us. The kids can thankfully carry on and only worry about who their going to play with and when. Life seems so much more complicated and empty for us.

So without depressing you to pieces with more about how we’re feeling, I will tell you that we are looking forward to this weekend. I have explained before about my birth family (at least I think I have :-)) and I have the fortune of having Jackie my birth Mom, my grandmother (Grandma Morrow) and then a Great Grandmother (Grandma Rousseau). I’m only giving you names so you can relate to who I’m talking about when I write about them. So we have 5 generations of family still. We were thankfully able to have a 5-generation picture done with Ashley when she was just a toddler. (I’ll look for that picture tonight and see if I can post it). Grandma Rousseau was devastated when she found out Ashley was sick. A few years ago Grandma Morrow and Grandpa Morrow were celebrating their 50th wedding anniversary and Grandma Rousseau came down from North Bay for the party. Ashley being typical Ashley, when it was time to go, jumped up into Grandma Rousseau’s arms to give her a big huge hug. It meant the world to both of them. I am also thankful I have that moment saved forever on camera. I’m going to try and post that tonight as well. Ashley continued to remember Grandma Rousseau and always wanted to know when we were going to go and see her again. We managed to see her one more time in January of 2001, so I’ll post a picture of that as well. Ashley’s hair was growing in nicely!

Well this weekend is Grandma Rousseau’s 100th Birthday!! Ashley knew that and when she spoke to her just a short time before she passed, she asked me to tell her she can’t wait to see her on her birthday. She never forgot Grandma Rousseau’s birthday was in April. They had plans to cut the cake together. I know she will be with us still, as I’m sure she wouldn’t miss it for the world!!

So as you can tell this is a very monumental weekend. 100 years of life. What a gift, what a blessing. Grandma Rousseau has seen, endured and lived so much. She too has had to bury children. Her daughter Lil passed away just a few weeks after Ashley, so that was a difficult time for her as well. I haven’t been fortunate enough to spend much time with her in the last few years with Ashley being sick, but she also teaches us lessons of life continuously. She just came back from Florida and I heard she had a scooter to whip around the park on. I guess slow was not an option in her mind and she had it cranked to full speed. She had people to see and things to do!! What a true gift to still be heading off to Florida every year and enjoying life to the fullest.

So what do you give as a gift to someone who I’m sure will just be happy to see all of her family on her special day? Well I’m hoping nobody else thought of it. I am giving her a handheld tape recorder. I am hoping because I have come into her life so late in life (Jackie and I just reunited about 8 years ago) that she would like to just sit and talk and leave her great great grandchildren some words of wisdom and experiences that she has had in her long life. Memoirs… How incredible they would be. First cars, first airplanes. First ride in an airplane. Electricity!! So much that we all just take for granted day by day. Grandma Rousseau has watched the world evolve. She has thankfully been able to watch her children grow and have their own children. She has experienced watching those children have children and even been blessed to watch those children have children, hence Derek, Danielle, Nathan and Ashley. 5 generations is not something every grandmother can boast about, but Grandma Rousseau sure can!

So we are headed off to North Bay this weekend where I was born. The last time we went, my Mum gave me the addresses of where we had lived. We went and saw the little house and then where we lived when my Dad was in the Air Force. We took pictures of both of them and the hospital that I was born in and then we lost the film. Tick me off! So I have been looking forward to retaking those pictures except with my Mum and Dad both gone I can’t remember what the address’s were and I have no idea where to find them!! Frustrating, but oh well…

A friend just called and told me that Ashley’s picture was on the 6:00 news tonight. Our local Hamilton news channel CHTV. I think it must have something to do with Rebecca, because she was being interviewed yesterday. So I have no idea what it’s all about but I’ll watch the news at 11:00. Being a human-interest story, I’m sure it won’t be on until close to 11:30 or later, but I’ll watch!! Yahoo, Ashley finally made it onto TV. She had a brief moment the Halloween after she relapsed. The TV crew came to the hospital and was interviewing kids. They tried with Ashley and no go! The poor thing was a walking hair disaster in her Cinderella outfit, as her hair had been coming out in tufts. She refused to talk to them and the minute the camera was turned off she lifted her head, smiled big and started to show them what she was doing. Little Monkey! So if you get a chance look for Rebecca’s story on the news, or maybe we can get it online as well.

So I’m going to try the scanner and see how well I do at posting some pictures from before our digital days. The scanning part is easy; it’s the resizing to fit it onto the webpage that’s tricky.

Thanks for continuing to check in on us. I can see we’re winding down some now.

Bye for now.

Sunday, April 20, 2003 2:49 PM CDT

HAPPY EASTER ASHLEY!!


Hey baby, Happy Easter. It’s been 5 months today that you left us to go and meet our heavenly Father. Do you remember us talking about what Easter was all about? It must be quite the celebration up there in heaven with Jesus and all your new friends right now.

Mommy and Daddy are really missing you today… Not that any day is any easier, but when Mommy had to go shopping it was really really hard knowing you wouldn’t be here to find your chocolate or candy. So I bought you a little bunny sitting on a bench that I can use after to leave you presents again. I wish you could eat the few candies that are in there too, but you were never really a candy lover were you? :-) You always liked to have candies because it was the kid thing to do, but the only thing you loved to eat was your push up pops. Do you remember when we were in Toronto when they took your stem cells out in October? Uncle Paul and Aunt Kathy came to visit and you asked Uncle Paul to go and buy you a push up pop. Well, we had to walk blocks and blocks to find a candy store that sold them and he bought you SO many! You were so happy to get them and even happier at the stash you had. Good and happy memories honey and we have so so many.

Your Christmas Tree finally fell down, so we’ll bring it back to you in the winter again. I bought you a little tiny Easter Tree, so we’ll see how that one does :-). Pretty soon we’ll have your headstone and we can start putting permanent things in for you.

Anyway babe we just wanted to you to know that we’re thinking of you lots today and always. Miss you like crazy and still wishing this was all a really bad dream. I know your happy where you are and I know your watching out for us. The kids are missing you, but Danielle needs a few extra hugs when you can. She has lots of pictures of you in her room but she still has her bad days.

Love ya and we’ll talk soon,

Love Mommy, Daddy, Derek, Danielle and Nathan

Thursday, April 17, 2003 2:07 PM CDT

I haven’t had too much to post recently. I haven’t even felt up to posting my talks with Ashley either. I guess I’m just feeling in a bit of a bummer.

Danielle went to Rebecca’s 11th birthday party on Saturday, and it’s so nice to still see her enjoying her birthday’s. They had a great time and it’s kind of neat that through Ashley Danielle has gained a new friend. It’s nice that Danielle has someone her own age that knew Ashley well enough that they can talk comfortably together about her.

Other than that I headed off to see the headstone people. Ashley’s picture for the back of her headstone didn’t turn out very well, so their sending it back. I gave them the poem that we want to put on the back. I think we’re pretty happy with it. I’ll post it just to see if anybody has any other ideas.

May the winds of love blow softly
And whisper so you’ll hear
We will always love you and miss you
And wish that you were here.

Your memory is our keepsake
With which we’ll never part
God has you in His keeping
And we have you in our hearts.


So not much else is going on. I went for lunch yesterday with Hunter’s Mom. This is the little Neuroblastoma boy who passed away a year ago December. It’s just really sad what our children have had to put up with on their journey through the world of cancer and then their journey to heaven. Sometimes it makes you question things…This is the first time even from when they were on treatment, that we have been able to actually sit and chat. It was really nice and we are looking forward to getting together again soon.

Somebody in the grieving group posted something a while ago that really made me pause and think. Just to leave you with a big thought today and I hope I word this right. She said when Sept. 11th happened the world came to a halt. Which it should have, it was devastating. She said in the US there are over 8000 kids diagnosed with cancer every year. 3000 of those children die yearly. She said what if the trade centers were filled with children with cancer. There are so many children being lost to cancer, but the world only hear’s about the one’s in their communities. There are too many all over the world. Enough every year to have a far greater impact than the World Trade Center’s had, but because they’re one by one, that impact is lost. Again, I hope I worded that right, but when I read her views, I just kind of sat there and said wow. I put this in perspective and it was pretty scary.

Hunter’s Mom suggested something to me. She would like the month of November to become Neuroblastoma month. She wants to sell ribbons and the money go to Neuroblastoma research. What an absolutely amazing idea. I am obviously game. She wants to make Neuroblastoma one day be as common a cancer name as Leukemia. Wouldn’t that be awesome if we could somehow make a difference to bring more awareness to other types of cancer and more dollars be spent on research.

If people think I have crossed over to insanity by writing to Ashley, just to let you know, it was kind of neat. It may be harder for you to read, but in reality it’s the same sort of journal entry, I just get to talk simpler and throw in our expressions of love. I am actually going to see one day if the kids want to do their own entries. It opens the door to Ken and the kids, which would be nice to finally include them in this journal. It may never happen, but the door is now open which I think is really important. This journal has been me writing about mostly my feelings and I do try to include the whole family, but it’s mostly been my views etc. It will be nice to give the whole family now the opportunity to send their love, hello’s and thoughts to Ashley. Again we’ll have to see…

So I’ll end this now by saying we’re getting on. I think Ken and I are starting to get in more unfunction mode. Lost puppies come to mind :-). With this whole SARS thing going on I haven’t been able to see Beth and Austin, which is driving me NUTS! Austin is continuing to defy everyone and is planning on going to Philadelphia the beginning of June for the MIBG treatment that Ashley had. Thank God! Rebecca has had her first chemo and things seem to be going well. We may be popping over to visit Austin’s family tomorrow; we’ll wait and see.

So Happy Easter to everyone. This is now the second holiday we have to face without Ashley and my Mum. More firsts… This can’t possibly be happening … Tell me we’ll wake up and this nightmare will be over,

Bye for now.

Update: Rebecca’s Mom just called me; they’re admitting Rebecca with a neutropenic fever. It’s her birthday tomorrow (her party was just last week). They’re obviously not happy campers! She got platelets and blood today, and sometimes you can get a fever when you get platelets. They aren’t taking any chances and are admitting her anyway. I can’t even take Danielle in to visit her because the hospital is all shut down with the SARS scare. It’s driving me nuts. I hope Canada gets this under control soon!

Oh ya, I keep forgetting to post the website for the wonderful lady who wrote Ashley’s Journal poem. I encourage you to visit her site as she has truly been blessed with a wonderful gift. The gift of words through poetry… Ashley’s poem will be in one of the books she is yet to publish.

www.tcfatlanta.org/KayeDesormeauxBook.html

Bye again!

Thursday, April 10, 2003 6:50 PM CDT

Hi Ashley,

I liked talking to you on your birthday, so I think that’s how I’m going to do your journal when I’m up to it. Before when we did your journal it was to keep everyone up to date as to what was happening with your battle with cancer. With you up in Heaven now, I think it would be nice to talk to you and share some of those talks with everyone. What do you think??? This way if anyone else wants to talk to you they can through the guest book. When I read the guest book out loud did you hear all the beautiful poems that have been written? Marnie (Sarah’s Mom) and Janine made their very own poems. They were so awesome! Martina Cannon the nice lady who at Christmas sent us that really nice Christmas Poem, made you a birthday webpage. It’s really pretty and made us cry happy tears that she hadn’t even met you and did that. We need to thank everyone for all their e-mails and guest book entries and cards here at home. They know what a hard day this was for all of us. So thank you everyone for always thinking of us!

So what was with all the snow? Michelle (Rachel’s Mom) had a pretty good explanation for the sudden snowstorm. She said you were sending all the kids a snow day!! They hadn’t had a snow day the whole winter season and we’re wondering if you had a part in giving them their very first snow day on your Birthday! Needless to say we won’t forget your first birthday in Heaven and neither will all the kids who got to stay home from school. The roads were soooo bad. It didn’t stop us from coming and seeing you at the cemetary though. When Mommy and Daddy pulled up to the cemetary it was so awesome to see all the cars lined up. We have such incredible friends don’t we? Well I don’t need to tell you that, you saw them all the time in the last couple of years and they all spoiled you with lots of love and presents. Did you see us all holding on for dear life to the balloons? It was a beautiful way to celebrate your birthday, even though we wished you were here with us doing a normal birthday. Rachel played her violin, which I’m sure you would have heard. She did great!! She played for you ‘Jesus Loves Me’. It seemed almost meant to be Ashley. The one song she knew really well and was the first song she ever learned was ‘your’ song. So even with the wind a blowing and snowing and so cold, she took off her coat and away she went. She was sending you her love in her way… So then Mommy read you her poem. I didn’t do so good with that did I? I started to cry but Daddy helped me until I could read it again. Then we sent you TONS of balloons!! We had to go the other side of the trees and they flew away so fast and so high. There were so many balloons and so many colours. (Did you see my bunch get stuck in the tree :-), they’re still there!) Then Bugs had us join hands in a circle around you to say a prayer on your 1st birthday in Heaven. It was really beautiful and we’re so proud of him to have the strength and faith to join us all together like that. We left you a little gift. A pretty wind chime letting you know you’re always in our hearts. You already know that though :-).

So we came back here to the house and we had munchies and talked and remembered. We cried too, but that’s ok because we miss you so much. There were so many people who wanted to come that night that couldn’t. We’re hoping they’ll still send us some memories of you to add to your album. We have some really good ones already. You touched so many lives!!! We’re so proud of you! Guess what our friends did? 11 couples of Mommy and Daddy’s friends bought us something for you. There was a wall in our house that needed a special table. Well they showed up that night with the table! Isn’t that just the neatest thing?? We were so happy, and teary of course. We just have the most amazing friends. They have been with us through thick and thin and they just always seem to do and say the right things. We’re just the luckiest people aren’t we? They all love you and miss you like crazy, but they are so happy they were a part of your life. So we now have 2 Ashley spots in our house. I would fill up the whole house if I could, but I’m happy having two special spots for you now. So that night we put up more pictures of you and moved your purple and pink roses to the new table and added the other little gifts people spoiled us with. We’re looking forward to putting up the special mirror that Aunt Kathy and Uncle Paul bought us for Christmas. It’s a stone mirror with beautiful words. ‘Let those love now, who never loved before. Let those who always loved, now love the more’. These were all gifts in remembrance of you babe and it’s going to look so beautiful.

Did you see Danielle dancing in Niagara Falls on the weekend? Mommy had to drive in that awful snow and ice on Friday. It was really yucky and I was so glad when I got there, only to turn around and come back again 2 hours later after Danielle did her one dance. We made it home safe and sound of course. With you and God, Grandma and Grandpa watching out for us, I should have known :-). We went back to Niagara early Saturday morning with Aunt Kathy and Katie. It was a good drive this time. We stayed until Sunday night and I thought it would be relaxing. I have now discovered even staying at the hotel does not make it relaxing. Aunt Kathy and I were pooped by 10:30 pm when we finally sat down to relax! Danielle did great though as usual. Out of 5 of her dances they won 4 firsts and the other one they got high silver. While we were gone Daddy and Nathan had father and son cadet night where they raced the wooden cars they made. Nathan won! Daddy came in second, so that’s pretty good too :-).

Monday morning Daddy and I went to the Chamber of Commerce to pick up the chq they had for you. I have said over and over again how super the Waterdown community has been, and we were again fairly speechless. We wish you were here for all the fundraising that has happened for you, you would have smiled your awesome smile and thanked everyone. So thank you again to the Chamber for a wonderful night and remembering Ashley!

Monday afternoon I went to your school to see your K class. They were all so happy to see me. It was kind of hard, but I knew you’d like it that your friends wanted to celebrate your birthday. Mrs. Nightingale bought you a chocolate cake with big pink and purple balloons. The kids made pretty pictures for us, mostly with rainbows and pretty flowers. They were great. I told them I had a present for them, but they couldn’t eat it or play with it. They all still wanted it :-). They were all SO happy when I pulled out the pictures of you. The frames I managed to find were so perfect. I asked if everyone wanted one, and of course they all did. Even a little boy who is new to the class because he’s heard so much about you. I then went over to the Grade 1 class. This is the class that knew and got to love you for a whole year. There are 4 new kids in the class there, and each and everyone wanted a picture. That was 45 pictures of you that all the kids were so happy to get. Your friends miss you and the grade 1 class did cards for us too. You have made such a difference in all of their lives. I don’t think even at such a young age that they will ever forget you…

So with the more snow we had on Monday the kids had yet another snow day Tuesday. Mommy took that time to laze around and catch up on sleep! You guys are wearing me out! I cuddled with bear, did you feel my hug…

I stopped by to see you today and clean up the flowers we brought you for your birthday and Brittany and her Mom had been there. Aren’t the flowers beautiful? Brittany really miss’s you honey. She has so many wonderful memories of the two of you playing and her Mommy is doing a scrap book for her, but she still cry’s because she misses her best friend. I’m hoping when she’s sad you can come and give her a heavenly hug and bring a smile to her face.

I’d better go; everyone’s been waiting to read how your birthday went. It’s pretty cool that everyone is still coming and checking up on all of us, isn’t it??? We have to say a really big THANK YOU to everyone who still reads about you and our family.

Love ya; miss you more than words can say, and sending you lots of hugs and kiss’s XXXXXXXXXXXXX :-)

Mommy, Daddy, Derek, Danielle and Nathan

Friday, April 4, 2003 8:44 AM CST

HAPPY 6TH BIRTHDAY ASHLEY !!

Hi Sweetie! Happy Birthday!!! So are you having a big birthday party up in Heaven with all your new friends? We’re hoping to have a party here for you. I know you’ll be here with us no matter what! We’re having really bad weather, but lots of people are going to try and be here for you today. There are so many people who won’t be with us but you are being prayed for constantly and because today is your special day, extra’s prayers will be coming your way… Your Aunts and Uncles and cousins will be here. Jackie from ‘up north’ (as you always remembered her) is coming with her boooyfriend :-), Rebecca and Austin are hoping to be here, but we’ll have to see how the day goes. Rebecca is starting her new chemo today, so she’ll have to see. I know your watching out for them. Send them a big hug and squeeze when you get a chance. Thanks for talking to Rebecca the day we moved. Telling her that ‘God is with her’ was so You! It brought tears to Mommy and Daddy’s eyes that you wanted to tell her that. Jane from the hospital is coming too, pretty neat hey and Kelly your ‘fart machine’ nurse is coming with her new baby boy. We’re sending you lots of balloons so keep your eyes open and please know that if we could reach up there and give you a big hug and kiss we would. We would love nothing more than to hold you right now and to never let you go. We miss you soooo much it hurts all the time. Yes we’re still able to and laugh and carry on life here, but that’s because you taught us how to live life. You brought us more joy in the 5 years we were blessed to have you, than we could ever have hoped for. Thank you Ashley for being you. Our sweet, loving, and always-happy little girl. The memories that we have, will have to last us a lifetime, but what incredible memories.

Mommy’s going to read this poem for you today. I hope I can read it without crying, but I’ll try.


We Walked Together

We walked together, you and I
A Mother and her daughter,
We had hopes and dreams for tomorrow
But tomorrow didn’t come.

We walked together you and I
We talked, we laughed, we loved
We shared so many happy times,
And for that, I thank the Lord above.

We walked together you and I
But only for a short time.
For all too soon it ended,
Leaving pieces of a broken heart behind.

And even though I miss you,
More than words could ever say,
I thank God that I got to walk with you
Every precious moment of every day.

Author Unknown.


Rachel is going to play your song ‘Jesus Loves Me’ on her violin. Isn’t that sweet? Danielle and I are going to be kind of busy again. We always are though aren’t we? She’s competing in Niagara Falls but we’ll be back in plenty of time to visit you no matter what the weather. Plans changed for visiting your school. Mrs. Nightingale your wonderful teacher who you loved so much was having a birthday cake for you today, so I was supposed to go there. The weather has proved to bad for school, so hopefully I’ll see them next week. I still made up pictures for your Grade 1 class and your new friends in your K class, so hopefully they will get them when I next visit. I love your school picture. You have that ‘smirk’ I so love.

Thanks for letting Daddy and I know that you’re with us in the new house. It’s so nice to know that you’re here with us. I’m sorry I haven’t been able to set all your stuff up yet. You have soooo much! I’m looking forward to doing that but I’m hoping you’ll come and be near me, as I’m sure to be missing you really bad.

I have had the honour of meeting through the computer a wonderful woman named Kaye who when I told her of you, wanted to write a poem for you and I. I cried and cried, but their good tears honey, because it’s about us. Here it is…

Ashley’s Journal

I looked inside Ashley’s Journal
And instantly I could see
A Mum with a broken heart.
Oh, why does this have to be?

I read about her little child;
So precious and sweet.
Came to this earth to touch lives…
But now walks at Jesus’ feet.

I read about all the pain
This child left behind.
Oh, her Mum searches daily
But no answer does she find.

As I turned the pages of Ashley’s Journal
There was so much to behold.
I learned how great this child was
As her life began to unfold.

Oh you were blessed by her love.
Just by the sight of her smiles.
To look in the eyes of a precious Angel
Oh, made life seem worth while.

The next page of Ashley’s journal
Must have been the hardest to write.
It shares with others your innermost pain.
And the reason you lay awake at night.

It tells of the pain your child lived with.
Treatments she had to endure.
But she kept on keeping you strong…
With love so innocent and pure.

She gave you strength to get through.
She gave it a little more each day.
Oh when you thought you couldn’t go on…
She carried you on your way.

Yes, as I read Ashley’s Journal
It was plain for me to see.
The bond of a wonderful Mum and child…
And a love that forever shall be.

Written by Kaye Des’Ormeaux
Copyright 2003
Dedicated to Tricia Goud
In loving Memory of Ashley


Thank you Kaye, for writing this poem for Ashley and I. I will tell everyone about Kaye’s website next time I post.

So enjoy your day sweetie, we love you so much! Do you feel our arms around you? We’re sure you do. Daddy and I are always missing you and sending you hugs…. Happy 6th and wishing you eternal happiness. Until we meet again our little princess….


Lots of love Mommy, Daddy, Derek, Danielle and Nathan

Saturday, March 29, 2003 1:15 PM CST

Well life is carrying on like our ‘normal’ I suppose. Last Friday night was a fabulous night. As usual a huge chunk of our friends came and supported us, thank you guys for always being there for us!! There was a silent auction and a live auction, then what we thought was going to be light snacks but turned out to be yummy food. There was an angel garden statue I was bidding on in the silent auction, but at the last moment someone outbid me!! All in all it was a great night. Ken and I only got to meet one of the people from the Chamber of Commerce, but to all of you, thank you so much for a great night in memory of Ashley. They raised an unbelievable amount of $7000. Thank You!!!

That night as I had thought turned into an all-nighter. Our friends joined us back here to end the party and some stayed until it was almost time for me to leave for Danielle’s competition. :-) So we arrived safe and sound (with a tired Mommy) and Danielle had a great day. She had 4 numbers she was competing in that day, and she won 3 High Silvers and a Silver. The competition had some really great studio’s dancing so thankfully it was entertaining enough to keep me awake the whole day. The next day we were back just for the studio’s Production number, which has all of the competitive students in it. It was just awesome and they got High Gold for that one. So Danielle’s weekend was a great success.

Tuesday I found out that the school felt it was more fitting for Ashley’s two classes to share in the tree planting in the fall, so for Ashley’s birthday I wont’ be going to the school to have the kids send her balloons. I will admit I was disappointed, only because I have this thing about doing things at the right time and place. I had planned on taking all the students one of Ashley’s last school pictures. So with that not happening, I will just say to the families who would like one of those picture’s of Ashley as a keepsake to let me know and we will figure out how to get it to you.

Ken and I will never move on like everyone else will. We will of course get on with our lives, but the loss of a child is something no parent gets ‘over’ and moves on with. Everyone else will and that is very understandable. Forcing people to remember and feel sad is not our intention. Feeling emotion is not a bad thing in my eyes; it’s knowing that you loved enough to feel that emotion. So opening that emotional box is to each and their own. So with that all said, Ashley’s birthday, will be celebrated on Friday night with anyone who would like to join us. It is not something we are ‘expecting’ anyone to do. We will be there no matter what, sending her our love the only physical way we can. We will be at the cemetary by 6:30. Yes I’m sure it will emotional, and why wouldn’t it be. We’re hoping Ashley will see and know we haven’t forgotten she’s turning 6. She deserves to be remembered on her special days and that’s what we will do now and always.

We’re coming back here afterwards, so if people would like to just join us here at the house that too is great. I bought memory books for whoever wants to either just jot down memories they have of Ashley or they can take it home or do whatever. It was a really good idea and I’ve asked some of the people at the hospital if they would like to join us in sharing those special memories. We’re looking forward to those. If you aren’t comfortable or able to join us that night but want to participate in some way, please feel free to send us anything you want added to her memory scrap book or maybe just light a candle which is always a nice way to remember….

So what I thought would be a quiet week turned out rather busy. I’m trying to take any of my e-mails that pertained to Ashley and putting them in a special folder, and believe me that has become a job in itself. I snuck away for lunch with Jane the hospital social worker this week and as usual it was most enjoyable. We could probably yap all day!! Help A child Smile is having a Remembrance night for all the families who have lost children on April 7th, (Ken’s birthday :-)) and she is putting together a slide show of our children. Should be an emotional night, but I am so proud of her that she has the strength to take the memories she has of all these children she has laughed, loved and lost and still have the strength to be there for all of us parents.

Yesterday was a sad day again. Beth called me in the morning to tell me she was taking Austin in to get his eye checked so I told her I would join her there. Rebecca was in clinic as well. They have been told the cancer is also back in her arm. There is no way to confirm any of this through biopsies because of the danger of putting her under, but they have to start chemo again. So they now have to start down a journey they thought was over. So with Austin’s eye looking worse and them having to wait for treatment in the states and Rebecca’s cancer spreading this is obviously not been a week to rejoice. Help us to pray that these families will find the right treatments and that they are given strength to go through all these emotional upheavals. Danielle used to pray for a cure for Grandma and Ashley’s cancer. Now she prays for a cure for Austin and Rebecca’s cancer. Wouldn’t that be a dream come true?? I’m so glad she religiously prays for that. I on the other hand have prayed for miracles as so many others have and that wasn’t in the plans. Living in this cancer world gives your faith a bit of shake. I was asked the other day if I have ever gotten angry. I have never gotten angry. Why haven’t I? I wasn’t brought up in a church but was thankfully introduced through Ken and his family. I just knew there was a reason when Ashley was diagnosed, we just didn’t know what that reason was. So there hasn’t been anger, but frustration yes! So how and what do I pray for these two little friends of Ashley? I WANT them cured!! I WANT them to grow old and be pain in the butt teenagers and then get jobs and move into adulthood. I also wanted that for Ashley…. So I guess I will just pray for peace, happiness and the strength that is needed in their unknown journeys.

I’m sure I have more to write but I’ve made myself a blubbering mess now, so I’ll end this just by saying if anyone would like to join us Friday night and needs directions or anything, please feel free to e-mail us. If anyone coming would like to join us sending Ashley birthday balloons, you can pick your own colours this time. We’re sending her rainbow colours :-).

Bye for now.

Thursday, March 20, 2003 8:58 AM CST

Two entries in less than a week. A new record for the last couple of months. :-)

Four months today Ashley left us at 2:00 am. It’s still not real. We miss her like crazy. Do you know what, there aren’t even words. There’s a family on our Neuroblastoma group who are in the waiting period for their 13-year-old son to take his journey and there are just no words of advice or comfort. Sometimes it’s overwhelming how many children have made that journey. When you go to the Heavenly Lights site it is so full of stars and children’s names, it’s just heartbreaking. As much as sometimes we feel like only we could be feeling the devastation through the loss of a child, there are so many all over the world. Believe me, it doesn’t make you feel any better, just sad that this world has lost so many innocents with their whole lives ahead of them.

I had to do something yesterday that was more difficult than I thought it would be. I had gone for lunch with a girlfriend and then we went to renew the kid’s health cards and mine. I was having a good day, but remember how I said, we act normal but underneath… I had told the lady when I got there that I had a health card for my daughter that she wouldn’t need anymore, as she had passed away. She obviously expressed condolences, but she didn’t ask or pry. She gave me a piece of paper to fill out, that only needed Ashley’s name, address, health card number and date of death. That’s it. I couldn’t even get past writing her name. It was just all so final. They were really nice and took me to a room so I could have my ‘minute’. I managed thankfully, but I’m sure to have another ‘mug’ shot. I was so happy to be having my picture changed but I’m not so sure now if the make up running and teary eyes will be any better than my last one.

Ok my real reason for sending this journal entry now, is to let everyone know a few more details about the Chamber of Commerce Auction and Dance tomorrow night (Friday, the 21st). The Chamber of Commerce is celebrating their 20-year anniversary and they had already last year decided before Ashley’s passing, to have it in her name. They wanted to continue with those plans and of course we are honored. We live in Dundas but the Waterdown Community has been absolutely incredible and the support from them has been from the start, just so overwhelming and touching. Ashley has impacted their lives and for that we will be forever grateful and proud. So they are having a Cocktail hour, an Auction and then a dance. This all starts at 6:00 (Auction starts at 7:00) and then the dance is at 9:00. Ken and I are really looking forward to it. As usual we will be surrounded with family and friends whose unending support is what keeps us functioning. So if anyone would like to join us there, it’s being held at the Five and Six Diner (formerly know as the Cattlebaron) on the corner of Hwy 5 & Hwy 6 in Waterdown. I’m sure tickets are being sold at the door, but the Chamber of Commerce is right across the street in a little office behind the gas station.

So with all that said, we are going to have a very busy weekend. Well I am anyway. Danielle’s dance competition is in Scarborough this weekend. I am pleased as punch that she isn’t dancing on Friday night, which has made it possible for me to attend the Chamber Function all night. The problem lies with my early morning. Danielle is due to dance Saturday morning bright and early in Scarborough. She has to be there by 6:00am, which means us up and out of here by about 4:30 or 5:00am. Eeek!! I may as well not go to bed, as I’m sure it will be a late night Friday. Oh well, I’ll survive and there’s always naps :-).

So I’ll leave you all now, and I’ll let you know next week how our Friday night goes and how Danielle’s competition goes.

Oops, I almost forgot to tell you something that happened to us this weekend. A very thoughtful and caring young lady who has been keeping up with Ashley’s story, has felt such a bond with her that she opened a web page for her in a different domain than caring bridge. She too has suffered the loss of a beautiful little sister who was four. She passed away in 1998. She has asked me for more pictures and I haven’t had time to send any yet, so hopefully when my life settles down in the next couple of weeks I can send her some. It’s a really long web page address, and sometimes it just seems to sit and think and you can’t get in. It’s in a domain called Angel Fire and I don’t know if their just experiencing problems, so maybe keep trying.

www.angelfire.com/va3/stardancermemorials/Ashley.html

Her little sister Taryn’s web page is just awesome and I encourage you to stop by there as well.

www.angelfire.com/tn3/angeltaryn/welcome.html

Thank you Phyllis for the beautiful tribute for our daughter and we are honored and extremely pleased that she has touched your life as well.

Talk to you all soon!

Saturday, March 15, 2003 0:47 AM CST

My brains on overload right now. I feel like I have so much to write, but how much of it is interesting to you all. I guess I’ll just rattle on and we’ll see where it takes us :-).

Where to start with the many things, up and down that have happened to us in the last week or so. I’ll first tell you about something that made Ken and I quite happy, the sad part being how we can possibly be happy about it. I went to see the lady about Ashley’s headstone last week and I mentioned before that Ken and I had mixed feelings about being on the same headstone. We wanted to be able to write either a special poem, or thoughts etc. Well with having all 3 of us on there, that made it pretty hard. I asked if we were allowed to use the back of her stone, and the gal thought ‘nope’, rules are pretty strict about that. So I had resigned myself to make do with what we could. I went to bring her pictures, as we’re having a picture put on, and she told me she called Ashley’s cemetery and their rules aren’t so strict and yes we could use the back. Well yahoo! So we’ll have a picture on the front and one on the back, and enough room to write whatever we want. We’ll figure that part out later, just knowing we have the space is reassuring to us. I’m going to be on the hunt for just the right poems, so if anyone has any suggestions, please feel free to send them to us.

So if you can actually call that a good thing, to us it was. I told you about my melt down after seeing Ashley’s dry suit the other day, well that day ended with me being in bed most of the day. To me it was a ‘major’ meltdown. I was dreaming that they had made a mistake and the hospital called to say they still had her there, one of those moments when a Mum and daughter rush into each other’s arms. In my dream after being re-united, typical of me, I was taking her in my arms to see the doctors to figure out what next to make her disease go away forever. It was a good dream, but obviously heart wrenching to wake up.

So Ken and I went to a movie on Saturday night. We were actually having a good night, up until the end of the movie. A Mom was re-united with her daughter and that whole running into each other’s arms thing happened. Well that just completely did me in. I couldn’t get out of the theatre quick enough and Ashley had a visit from us very late in the night to just sit, cry and wish, wish and more wishing… Bad night to go after all the rain and it freezing up, but I didn’t care. How to explain to people how we can still function and act like all’s normal and life is going on. Life must obviously go on, but the ache in our hearts is constant and regularly squeezed and crushed, but we can hide it so well. Sometimes I wish I could be like other Mom’s that have done nothing but grieve, but with our lives and with 3 other children, it just doesn’t seem to work that way. Church has been suffering a lot. Ken and I are struggling with that daily. We love our church family and miss them, but weekends are the hardest for us and typically that’s when everything crash’s in for us. So the kids are suffering for that. We as parents feel inadequate for not giving them the proper Christian support, but right now it’s just so hard. Are we angry? No. Are we confused, of course. Do we question, of course. Are we confident she’s in a better place, definitely. It just doesn’t take away the ache of wanting her here sitting in her seat at the table for supper. I still pull out 4 cups for drinks for the kids and 6 plates for dinner. It kills me to put one back. So for everyone in our church family, please bare with us. We have not forgotten all the love, constant support and prayers. I know we couldn’t have done it without all of you, but it just seems like this whole internal battle is going on and we have to pray so differently now, and it hurts.

Ok that was a real purge… Sorry, but I guess that’s what this journal is supposed to be about. I will be so thankful to have this journal in years to come when I can see the healing process begin. So what else have we been up to? March break has had the kids at home and enjoying the new house with constant kids. It’s actually gone very well. I managed to pop into work for a few hours, but I’m still pretty useless. Thursday Beth and her family managed to visit after Austin’s clinic visit. They were headed to Disney on Ice with Help A Child Smile. We opted not to go this year. I was afraid I wouldn’t handle it well. Last year poor little Ashley wasn’t feeling well and I remember spending a better part of the time in the bathroom with her. Next year hopefully. When Beth came, she brought a gift for Ashley’s birthday that she couldn’t resist. She found a beautiful praying little lamb that winds up and plays the tune of ‘Jesus Loves Me’. Beth, you always find the most touching gifts, THANK YOU! Her new lamb sits in her special corner. We’re going to have to get a bigger table soon. It’s so nice at night to light her candle with all her special trinkets and gifts and picture. I need to post her school picture soon; you’ll all love it. It’s a typical Ashley smirk smile. Mischievous, with those sparkly eyes. She had come straight from the hospital just to have her picture taken, so she was still not 100 %. I’ve got a scanner coming next week so I can get a little more variety of pictures to put up. Bare with me as I learn more…

Just a quick thank you to my Aunty Jean in England who came to visit last year. She’s my Dad’s sister and we hadn’t seen her in over 20 years. It was meant to be. She managed to spend time with my Mum before her passing and got to meet all our children and have her memories of our special little fighter. She has made us so proud. She stood up in front of her congregation in England and actually did a eulogy for Ashley. I just got the tape in the mail today and am not feeling strong enough yet to listen to it, but Ashley’s strength, courage and love was evident to everyone who met her and we are so proud Aunty Jean felt the courage to share her story. Thank you Aunty Jean!!! I will listen soon, I promise.

Ashley received a guest book entry from a gal who started a web site called Heavenly Lights. She has placed a Purple Star for Ashley in the web page. It’s a really incredible site and I encourage you to visit. There are so many children that have passed away, and there is so much information, poems, inspirational stories etc. Ashley’s star just leads everyone back to her web site, but it’s so nice to have somewhere our ‘angels’ can be shared with others. Web page is www.heavenlylights.homestead.com

Ashley’s four-month anniversary is coming up in 6 sleeps (March 20th). How is time passing so quickly??? We start Danielle’s competitions the next day. We have the Chamber of Commerce function that night and I’m sure I will be late. Her competition is in Scarborough. Figures…

This leads me to the plans that are under way for Ashley’s birthday. I have visited many, many sites that parents have had to experience celebrating children’s birthdays without them. What’s right and what’s wrong, what makes people comfortable, uncomfortable? That is going to have to be all up to you. I will tell you of our plans and if you would like to be included the choice will have to be yours. We always have our private moments with Ashley so in celebrations, we are proud to share and reminisce. Our day so far is hoping to go like this. Danielle has to be in Niagara for another competition, so our day will be full. Through help from friends and family we’ve come up with some plans. I want to go and visit Ashley’s two classes. Her K class from last year that is now in Grade 1 and her K class from this year. Balloons are a way for us to say hello and send our love. So I thought we’d take balloons for the two classes to write a message to her and send them to her. I also am trying to pull off a little gift for each of them, in memory of Ashley. After that Danielle and I will whip off to Niagara for her competition. She dances at 1:00, so we’ll be back in plenty of time for what we have planned for night. We’re inviting friends and family (if you don’t receive a call, please don’t feel your not welcome, everyone is welcome, it’s a time to remember and rejoice). We’ll send our personal balloons from the cemetery and then come back to the house to just be together. We have had friends and family surround us and wrap their arms around us through this whole ordeal; we want nothing more than to share in these moments. So we’re hoping to be at the cemetery by about 6:30, just for a quick hello, sending our love and then just come back, relax, enjoy and smile happy memories of our baby.

Another idea that friends of ours (thank you Bugs and Linda!) came up with was a memory book. Everyone who comes if their comfortable doing it, we’re hoping will take the time either then, or bring it to us later, write down a favourite memory or memories of Ashley. Kids can draw memories, or pictures… It is an absolutely fabulous idea and I can’t wait to see what memories hold a special spot in their lives. So, that’s all that’s planned for now. Just a hang out night and be together. Join us if you like, or if you’d like to send us your memories in private, e-mail them and I’ll add them to her book.

So that’s all I have to say for now, sorry it was a long post, but I knew I had lots to yap about. I’ll let you know how next week goes. Oh ya, one more thing to tell you. Danielle’s dance studio has come up with another idea in remembrance of Ashley. They are going to plant some purple lilac trees at the studio. We are incredibly honored and pleased she will always have a special place at her favourite place. They have decided that it would probably be too emotional for Danielle and Katie to dance at the recital so they want to have a celebration day at the studio where they can do a dance there. The girls are a bit disappointed as they were looking forward to doing the dance with all the lights and stage, costume etc., but hopefully we can make that day special for them too. I’ll find out more about all that later and keep you posted. I have no idea yet if it’s going to be open for visitors or just dancers.

So I think I’m done now! I’ve come across some poems in all my surfing lately. I’m hoping I can share some with you soon. As soon as I get this computer thing fixed and my scanner up and running, I’ll hopefully be able to regularly post new pictures like I promised. Soon….

Take care and thank you for all the encouraging entries. I know some of you are having a harder time writing to us. What do you write…? I know how difficult it is. Please don’t be afraid to write to Ashley. You can use the guest book to write your own memories, or send her your love. Other web sites have done this and it’s pretty neat! Just an idea if you’re feeling at a loss for words. I’m planning on writing a journal entry to Ashley on her birthday, so be ready for a bit of a change…. :-)

Bye for now.

Thursday, March 6, 2003 3:52 PM CST

Well we have moved successfully. What a week and what a day. We had so much help it was unbelievable. Our friends and family just swooped in and within hours it was all gone. At the new house they happily set everything up and when they left, our house already had a lived in and comfortable feeling. What more could we have hoped for??? I can’t thank everyone enough for being there for us. We managed to get through really well and as usual all the support is what got us through.

Ken and I went back to the house on Sunday night to double check everything and I was finally able to have a cry. That house has so many good memories, but the better parts of our memories are and were around the pool. We have lots of pictures thankfully that recapture those moments. Ashley spent so much time at the hospital in the last 3-½ years of her life; I almost have more memories there. It didn’t hit me really hard until Ken came walking in through the house with Ashley’s dry suit. Wow! That was the cruncher for both of us. That sent me into unfunction mode.

The kids have been quite excited being here in the new home. They are out snowmobiling most of the time. With all the snow we’re still getting the snowmobiles are getting lots of use.

Danielle has managed to get sick and had to be picked up from school. Derek is home today sick as well. So obviously we have something running around this house. I felt sick most of yesterday, but I’m not sure if it was just me and overload. We’ll see.

When I went to the school yesterday the principal stopped me and asked me something. A nursery in Ancaster wants to donate a tree to put up in memory of Ashley at the school. The school is doing a big addition and they want to plant it when the addition is done. Well you can imagine what that did to me. Poor Jack, the tears wouldn’t stop. We are so honored and it still brings tears to my eyes…. Reality is sinking in fast.

We have our little corner of our living room set up for Ashley’s pictures and candles and some of her favourite knick-knacks. I know she’s here with us, but the last few days it’s not been enough.

I’m obviously still feeling blue, so I’ll end this now and just say again a huge thank you to everyone who helped us get through a really difficult time. We have the Chamber of Commerce Auction and dance coming up on the 21st. There’s a whole pile of us going to that, so hopefully Ken and I are feeling strong again. Danielle has two competitions coming up which I’m sure are going to complicate our life’s plans. She has a competition on the weekend of that dance, so hopefully she’s not dancing on the Friday night. She also has a competition the weekend of April 4th. That is obviously Ashley’s birthday and I’m not sure what I’m going to do if she has to dance on the Friday night. It’s in Niagara Falls. I know we are going to celebrate Ashley’s birthday but I really need to get Danielle’s schedule so I can arrange a ride for her if she has to dance on the Friday. Complicated as usual, but when is anything ever easy around this house????

I’m going to make life easy on myself and let everyone know our new mailing address here. The phone number has stayed the same.

387 Old Brock Road
Dundas, Ontario
L9H 5J1

Thanks again for keeping up on us. Thank you also to all the new readers who have signed our guest book.

Bye for now.

Tuesday, February 25, 2003 8:41 PM CST

This entry will be fairly quick. (Who am I kidding!) Anyway, I just wanted to let you all know an update on Austin and Rebecca. You all know you can visit Austin’s site from the bottom of Ashley’s web page. Beth has detailed what’s going on with his treatment plans. Things are encouraging for them and for that I AM SO HAPPY! Hope is not lost and we are so thankful for that.

Rebecca started radiation last week. So they are at least starting treatment. It doesn’t sound like there are too many other plans right now. There was a write up about her in the Brantford paper. She looks awesome with all her new hair!

Moving day is only 4 more sleeps away! Things are motoring along now. We’re hoping everything will go well. We’re missing our little munchkin like crazy right now. I’m dreading handing those keys over for this house. We know Ashley is going to be with us no matter where we are and wherever we go, but it will definitely be hard. All her boxes are pretty well packed up and I am looking forward to having some time to unpack them. I had help packing them, so some of the stuff will be a surprise for me. :-) It’s like finding gold when we find something of Ashley’s. We literally say ‘did you strike gold?’ :-)

I’ll let you all know how it goes with the move. How did everyone enjoy that snow on the weekend? Ken and I were supposed to go to Rebecca’s baptism on Sunday. Unfortunately we opted to stay home and off the roads. Poor Rebecca, most of the guests that she invited weren’t able to make it due to the road conditions.

Ok I’m off now. I’m going to head over to Kathy’s to post this entry. I haven’t had time to take our computer back in to be rechecked for my Microsoft problems, so I still can’t post my own entries. I’m going to attempt to load some pictures from Kathy’s computer tonight. So look for new pictures! These are pictures that you have all seen before but I had to quickly pick a few as it became too sad trying to pick which ones. They are all so awesome and they are our only link right now. How sad….

Bye for now.

PS Thank you to everyone who has e-mailed us privately with words of encouragement. I had a couple of e-mails telling me to feel ok about celebrating Ashley’s birthday. I was reminded that no matter where she is, she is still ours and it is ok to want to include her in all our and her celebrations. That was incredibly nice to hear and made us feel normal.

Wednesday, February 19, 2003 9:16 PM CST

Where to begin with this entry. Life is sometimes just too sad. Yesterday and this morning have been filled with heart wrenching news from the two families that were closest to Ashley in her ‘cancer’ world. Yesterday Austin’s family found out that all of his treatments have not been working. The tumor in his head has increased in size, which means the radiation he had before Christmas has not worked. This is obviously devastating news for their family as the options are just so far and few between now. Beth and I just talked this morning and she figured out in the past 4 years he has actually only seen 5 months of no treatment. He has defied the doctors constantly by withstanding all the different chemo's that they have given him. We parents go through the agonizing thoughts of “do we keep putting our children through this”? The answer, YES! How can all of us as cancer parents give up on our children? We can’t. It’s just that simple. There comes a time when you know enough is enough, but until that time comes, the fight must go on. I think I’m writing this to you Beth, but you already feel this way :-).

The second batch of bad news was Rebecca, Ashley’s ‘chemo’ buddy. She was in the hospital because she had gotten sick enough that she was dehydrated. I saw them on Thursday and they didn’t know why she was sick, they were just hoping it was an infection. I saw them again on Sunday and found out that her vision in her one eye had gone. So they did a CT Scan. The news from that yesterday was she has a tumor behind her eye. This is totally irregular for her type of cancer. Rebecca had 95% odds of beating her cancer. She was cancer free in July and then her heart crashing in September, it just seems endless. The doctors all have to bang their heads together to figure out how to treat the cancer, her heart, and the broken bone still in her arm that everyone is afraid to fix after the last failed attempt.

I am sitting and writing this with such a heavy heart. How and why do our children have to suffer so?? The whys never get answered and I know we are supposed to learn so much from the strength of these children and Ashley, but wow, when does it end? I don’t even know what to say to these parents. I can only be there for them when they need me and try and stay positive.

So now that your all just as overwhelmed as I am, I’ll tell you things are relatively quiet around here. With the extension of our moving date, things packing wise have come to a halt. I had a whole bunch of girlfriends in helping clean the house last night. Boy was it a disaster! It was actually a good night and it was nice to be busy. We still need to do one more cleaning night next week and hopefully we’ll be all done. Thank you girls for all your help!! What would I do without you all, again, again and again? Our support is continuous and for that we are so
thankful.

Ken and I are already thinking ahead to Ashley’s birthday. It’s on April 4th and it seems so far away right now, but once we’ve moved and gotten settled, it will be upon us. How on earth do people celebrate lost child’s birthdays?? I know I want all our friends to be with us. Is it right to bring everyone down with us? I want to send her some more balloons. Is that silly?? I know that whatever we decide it will be ok, because we have to do things our way. I guess I’m just voicing our thoughts running around in our heads right now. I was talking to my sister in-law the other night. I said I still don’t think life seems real. The move and all the house stuff has kept me busy, and Ken’s been busy with work. Our little spurts of reality are crushing, but most days it just doesn’t seem real. We wonder when, if ever that feeling will go away. In the last week I have been in the hospital 3 times. I feel like I have become a fixture again :-). Each time I go I seem to bump into people I haven’t seen in a while. Ken was in the hospital yesterday for the first time since Ashley passed away. He went in to visit Rebecca’s Dad. He did fine right up until he was leaving. He was talking to Ashley’s child life worker and was standing right beside the picture they have of Ashley. It was a Hamilton Spectator article they did on Child Life workers in McMaster and Ashley was only 3. Her little bald head has been on that wall for a long time and we’re hoping forever. Anyway it became emotional for him then. Unfortunately with Rebecca needing more treatment and possibly Austin, depending on what they do, we will continue to be fixtures.

So that’s probably it for now. Hopefully I’ll have happier news for you next time.

Bye for now.

Thursday, February 13, 2003 5:09 PM CST

As usual, I think I’m going to have a lot to write about today. I didn’t realize it had been so long since I posted. I have to take everyone back to last week. Wednesday was Danielle’s birthday party. I was in a bummer mood and really didn’t feel like doing anything except feel sorry for myself. I have discovered this Laser Tag can be therapeutic. None of the girls had played before, as I mentioned before. Well you’d never know it! They all picked it up right way and came away with scores higher than some of the boys had. The second game, Danielle won! She had a higher score than Ken or I had ever had. So that was pretty fun, and she was really happy. Just like last time, we were having way too much fun at this game, so we decided to do another. There was another birthday party going on with 10-year-old girls. So our girls played their girls and whipped their butts :-) It was a really good night and I felt much better after. I think the girls had a blast as well, which was the main thing. We’re already talking next year having Danielle’s party there against her cousin Jacob’s and having Derek’s party against Katie’s. It’s pretty neat having cousins the same age and that sounds like it could be really fun.

The rest of last week was the usual. Packing, Dance etc. Danielle is really busy right now with all her dance numbers. Competitions start in March and they have a production number with all the competition dancers in it. This means lots and lots of practices. There’s something like 53 kids to choreograph into one dance. She’s actually practicing a couple times a week and 4 hours every weekend for the next 3 weeks, with her other class’s on top. So it’s pretty busy.

So this brings us to Saturday night. The Curve’s dance for Ashley. Ken was having an emotional time before we went, and I was trying to stay upbeat so we wouldn’t break down there. We managed, with just a few spurts :-). It was a fantastic night. We met the owners and the gals who had organized it all. That was where it got a little emotional for us. How do you say thank you for something like this??? We had so many of our friends come out that night. What a great bunch of friends we have!! Over and above all that, Hunter’s parents, the young boy who passed away from Neuroblastoma a little over a year ago, were there. It was great to see them. An even nicer surprise was the nurse that was with us the night Ashley died (boy it hurts just to write that) came to the dance. I think I could have sat and talked with her all night! Thank you so much Kim for coming and it was soooo good to sit and chat! I assumed it was going to be a good night having all our friends there and it would fly by. I was
right. The dance was over so fast. So we took the party to a friend’s house and were up until a ridiculous hour. It was just one of those nights that was about Ashley and I didn’t want it to end.

Monday I had lunch with Ashley’s clinic nurse and Shannon’s Mom (who if you remember passed away just before Ashley). It was so nice to catch up. We all managed to make it through with no tears. Isn’t it amazing that we can still function? I sit in wonderment sometimes as to how we’re managing to keep going every day. I know that it’s all the prayers, but at the same time guilt sets in. I feel like we’re not supposed to be functioning. Not that we have any choice. Move in date is now only 10 more sleeps away (in Ashley’s language :-)). I am finally feeling overwhelmed by it all. Kathy and I were out trying to figure out blinds for the bedrooms. We have so many windows that will need doing, but my main concern has to be the bedrooms. Who would have known that picking blinds could be SO MUCH WORK!

It all was too much last night. I realized we couldn’t clean the house until next week, the carpets not going down until next week; we still have this house to finish packing. We need to find a few more lights and Danielle a bed, and over and above all that I just felt like taking some Ashley time. I don’t have any to give to her. We were looking at day beds last night to put in her room and I just wanted to scream I want a real bed for her! As you can tell, my meltdowns coming. So I’ll end this now before I have you all crying.

Ken and I are heading off to Curve’s. They want to present us the money they raised. We are so honored that the community hasn’t forgotten our little one. It was so evident that night at the dance.

Well bye for now.



UPDATE: I wrote this journal on Wednesday morning and our lives have changed since then. I didn’t post it as Ken and I had started discussing seeing if we could change our moving date. It was going to be too tight getting in there with tradesman still working there. The new owners have graciously given us the Saturday March 1st to move, as our closing was Feb. 28th. So we now have a real and a DEFINITE moving date. We’re not doing bad seeing as it was supposed to be last October.

We are also very overwhelmed by the cheque that was presented to us by Curves. They raised $5186. Isn’t that incredible! I was having a bad day on Wednesday (that meltdown came as I expected it would) and it was very emotional. We just can’t thank them enough for everything they did in memory of Ashley. They told us they would probably be attending the Chamber of Commerce event for Ashley on March 21st, so hopefully I will be in better shape to sit and talk to them then.

Today I went back to the hospital for a visit. Rebecca has been re-admitted. She’s having tests done this week but her parents are worried it’s her heart again. Help us keep Rebecca in our prayers while they figure out what’s going on with her. Ken used to spend nights with Rebecca's father and I used to be there with Kelly during the day. Kelly told me today they miss us there. Hopefully they'll be home soon and they won't notice us not being there :-)

So now I’m caught up. Sorry it took so long, but we just made the decision to change our moving date this morning and it’s been busy re-routing everyone.

So, bye for now :-)

Tuesday, February 4, 2003 8:30 PM CST

Just to let you know, I wrote this journal last night, but it couldn’t be posted until I had e-mailed it to Beth.

So tonight I am sitting up late wondering what and how much to tell all of you about our daily struggles as parents. I guess friends of friends have been asking how long I will keep putting entries in Ashley’s journal. Sometimes it seems almost pointless when everyone wanted to read regularly about how she was doing. Now you only to get to read about how we as a family are coping. How long will we continue, forever probably. How long will you all keep reading, forever hopefully. Our hopes and dreams were to have this web page updated regularly on how well she did in her treatments and that we were to be granted the miracle of life. I was hoping to tell you all about her birthday parties, her school days, her graduations, her wedding etc. etc. I won’t be able to post about all those wonderful and monumental moments, so I may try and envision what she is doing in heaven with all her new friends and start writing some of my entries to her. That’s still too difficult to imagine, so that will take me some time to take this journal in that direction, but it’s a thought I’m working on.

I’ve visited a few other web sites of parents who have lost children and noticed their entries are now 3 months apart. Can I take that long to post to you all? I don’t think so. Many have said this is a form of purging, and that it is probably a healing process. I tend to agree. Any who know me well enough, knows I am an open book. If anyone takes the time to ask and listen they can have our entire life story. I’ve never been (and don’t think ever will be :-) at a loss for words.

Ken and my emotions are chipping away almost on a daily basis. Normalcy right now is Ken going to work and managing to function there. At home he is at a complete loss. Too much emotion that he just doesn’t know how to deal with. The simplest tasks are too overwhelming. For me it’s not having the brainpower to go back to work and trying to function here at home. This is the distinct difference in the male and females grieving processes. No grieving process is ‘normal’ or the same for each person. It makes it difficult to know how to comfort one another as we both grieve differently. I guess that’s why God gave us Adam and Eve. We are a piece of each other but our own individuals. I guess I’m feeling philosophical tonight. All I know is each day the heart gets squeezed a little tighter and normal is just not normal without our fourth, our youngest and our miracle baby. I need a really good melt down (can you tell?), but the days just keep ticking along, busy with this and that and the list seems to be endless.

We had an e-mail from a gal who started a sight for families battling illnesses or who have lost children. She started it after she noticed the guest book entries got farther and fewer between for families who have lost their children. It’s an incredible site and I stand in awe that someone can take the time to worry about hundreds of families in need. Well Ashley’s site was recommend to her and her site has been ‘adopted’. So I send a warm welcome and thank you to Candice who is our adoptee from Portland. If anyone is interested in adopting a site please go to www.chubbychica.com and the caring bridge pages that are up for adoption are on the left of the screen.

So with that all poured out of me, let me tell you how the last few days have been. Thursday I went back to the hospital, hoping to catch Beth and Austin. I needed to give Beth a hug, that through phone lines I just can’t do. I couldn’t find her and found out after that she was there; I just took the wrong hallway and missed them. So Beth I’m sending you a cyber hug ( ). I’m so glad Austin’s counts are recovering! I also dropped off a few more pins for the people that I missed the day I was in. It was a short and sweet visit but I managed to bump into one of Ashley’s favourite nurse’s that I haven’t seen since her funeral. So that made it worth the visit. Kelly, make sure you let me know when your new bambino arrives!!!

Saturday was a crazy day. Ken, Paul, Calvin and Steve (Paul’s son) managed to run away and do some snowmobiling. I guess it’s a good thing they did with all the rain we got today. I’m glad for Ken that he is able to have some release from the pressures that he is under. His drive home gave him too much time to think and he felt his melt down coming. We were busy on our end with sports and trying to get things done at the new house.

Saturday night, and it seems to be weekends in general, are the hardest for Ken and I. We are able to socialize and be happy, but internally we seem empty. We want to keep busy and at other times don’t know if that’s the best for us. Who really knows???? It seems to be working for us right now and we’ll just take it all as it comes. We had lots of family and friends over for Danielle’s birthday on Sunday and it was a really enjoyable day. We are so fortunate to have the friends and family that are continuously there for us.

Ken and I went out of Friday night to buy Danielle’s birthday presents. I never expected buying a birthday card for Danielle would bring me to tears. Cards that say ‘for our daughter’. I almost didn’t think she would get one, as I was finding it much to difficult. Then to top it all off, I forgot to buy one for Amanda, a friend’s daughter who turned the big ‘13’. So we had to go back. She almost didn’t get one either! It’s the big things, it’s the little things, and it’s everything.

I’m obviously feeling talkative tonight! I still have more to say. Sorry!!

Tonight was Derek’s birthday party with his school friends. We had a blast. Ken and I love Laser Mania and I think we had more fun than the boys. I am proud to say that out of three games, and of all the male gender, I WON 2 games. That is pretty cool! Ken had the overall high score, but I gave him a good run for his money :-). We get to do it again on Wednesday with Danielle’s school party. We’re looking forward to it.

So tomorrow is going to be a full packing day. Will I get through it? It depends I guess how my mood is and how strong I’m feeling. I know that absolutely everything of Ashley’s is going with us. Lipstick’s, nail polish’s, stuffed animals, blankets, and the list goes on and on.

So I will finally bring this entry to an end. Sorry for rambling, but I guess it’s a purge thing again. I need to take Ashley’s Christmas Tree down soon and right now I can’t even bare to do that. Just to let you know, on one of the websites that I read, the guest book entries were actually addressed to the child that passed away. If any of you seem at a loss for words as what to say to us now, don’t worry about us. Just an idea, but maybe express your feelings to Ashley on how she has affected your life and what you are going through. We know she touched so many people’s lives and if anyone wanted to post a personal entry to Ashley please feel free. We would be honored, not sad.

We are actually going to attend our first fundraiser that is being held for Ashley. The Curves dance this Saturday is in honour of Ashley and proceeds are going to her medical fund and also to Breast Cancer Research. It’s a dance and buffet later. It sounds like good fun. If anyone would like to join us, and some of our friends, please call Curves’ in Waterdown (905) 690-3838 and they can give you any info you need. It’s being held in Waterdown Legion and it sounds like it’s going to be a fun night. We’ll see how Ken and I fare as all the fundraising that so far has happened we have been unable to attend. I hope we get through it, but as usual we will be surrounded by all our support :-).

Now I’ll really stop. Take care and bye for now. I’ll let you all know how the ‘girls’ party goes :-).

P.S. I’m still having problems with this whole Microsoft thing. So still no new pictures. Sorry :-(

Thursday, January 30, 2003 at 07:23 AM (CST)

It seems like forever since I last posted. I have been without our computer since last Friday and I actually felt lost without it. It made me realize how much time I actually spend in front of this screen. Being a part of Ashley’s Neuroblastoma Cancer On-Line group has me receiving quite a few e-mails a day. When Ashley passed away I was up to about 800 e-mails that I needed to go through. By last week I had whittled it down to just over 500. Well now that my computer is back, I have over 750 again! So for all the personal e-mails that have been ent, please bear with me. I have so much to write to each and every one of you, but time just doesn’t seem to allow but I have kept each one so I can respond hopefully soon. I normally like to e-mail people who have signed Ashley’s guest book as well. I haven’t been able to do that either since Ashley passed away, but I am looking forward to taking the time to re-read all the entries and send my sincerest thanks for the constant prayers.

I’m sure you have all noticed that Ashley’s web page has a new look. We can thank Austin’s mom Beth for that. Beth, in all her spare time :-) found a web site with some really nice borders. Ken and I picked the one that just seemed to say ‘Ashley’ and she changed our page for us. Thank you Beth!!!! One of the reasons my computer went in to get fixed, was I am unable to post my entries myself into Ashley’s journal. Microsoft for some reason is now booting me out when I try and post. So again Beth to the rescue, I have had to e-mail my entries to her and she posts it for me. So this is why I haven’t been able to post any new pictures yet. I have been looking forward to swapping the pictures around every couple of weeks. My computer has returned and that problem doesn’t seem to be fixed. So hopefully I’ll soon have that figured out and put some new pictures up.

So what have we been up to? The time still seems to be whizzing by. I don’t know why or how it can when life should be at a stand still, but it is. The kids are still busy with sports. That seems to keep us going. All the decisions for the house and getting everything finalized seems to be taking up a better part of my time. I had to carpet hunt three times last week. I picked one ages ago and found out last week it had been discontinued. I picked another one and they didn’t have enough and had discontinued the colour. I’m obviously not meant to have carpet in our house! So I picked another one and we’ll see what happens :-). I also pulled a ‘typical’ female thing. This is the first time in our having a home that I have been daring with colours that I’ve picked for paint. Well I was daring upstairs, but went fairly neutral downstairs. So the house is all painted and ready to roll and didn’t I decide that downstairs is boring and it needs colour. So my poor painters are coming back this week to repaint a few rooms. My biggest decision seemed to be what colour to put in Ashley’s room. It was a darker gray for Nathan and when we decided to keep the room I wanted to change the colour. It took until a few days ago to make that decision, but I love the choice and can’t wait to see what it looks like.

We actually have a moving date. Feb. 22nd. We’re cutting it really close, but we’re going to have to enlist some help to move and our closing is Feb. 28th, which is a Friday. It’s pretty hard to ask friends to take a day off work, so we changed it to the Saturday before. We will have tradesman in right up until the Friday so this should be interesting! I haven’t even started packing, so as usual our life will be chaotic up until then and I’m sure I’ll find something after to make my life complicated :-).

So Derek turned the big 12 on Monday the 27th. His cousin Katie turned 12 as well on the 26th so as usual we all piled into Kathy and Paul’s house. They must be getting sick of us! Anyway all the family went for both the kids and they had a super bowl party later that day. It was a most enjoyable day. Derek’s birthday was fairly quiet. My brother and Derek’s cousins came over and the neighbours with their boys. Derek seemed to have a good time. Danielle’s birthday is this Sunday, so I guess we’ll be having the family and friends this time. Next week is birthday party week. Monday night is Derek’s party and Wednesday night is Danielle’s. They have both picked laser Mania as their party choice. I’m ok with that as both Ken and I love playing that game. I’m a little concerned about the girls. I’m sure it will probably take them a bit to get used to the game, but Danielle asked all her friends and they of course want to do what all their brothers have had a chance to do. We’ll see how it goes. I know we’ll be partied out by next week!

Tuesday I was able to go and watch a few of Derek’s school hockey game. Our school put together a hockey team that competed against other Christian schools. It was held in Guelph and Papa Stan and I went down to see how they did. It was great fun and Derek managed to get the first tournament goal, so he was pretty happy. They unfortunately didn’t make it to the finals but they all had fun and that’s the main thing. The team played really well together considering they had only practiced twice together. Stan and I took Derek and his friend Scott out to lunch after. It was a good day all in all.

So I have finally managed to make headway in the paperwork for my mother’s estate. It’s pretty bad when I am just notifying everyone 4 months after. Oh well, I see the end of the pile in sight, so that’s good. Ashley’s thank you cards are next. Her funeral director gave us 150 thank you cards and told me to let him know if I needed more. Eeek! I managed to organize them into piles this week and I am overwhelmed by the amount of contributions that were made to Help a Child Smile, Camp Trillium and the Cancer Society. All I can say is WOW! Another source of pride for our little bundle. The funeral director told us he rarely sees the amount of flowers (32 arrangements) and the quantity of contributions. People either do one or the other. Not for our little Ashley. So many people were obviously touched by her that this was another way to show their love and sincere sympathy. I’m looking forward to doing them next. I may have writer’s cramp by the time I’m done :-).

So that’s about it for now. I’m sure I could have a million more things to tell you but it’s nearly 2:00 am and I have to e-mail this entry to Beth, so I’ll leave it at that. Please make sure you keep up on Austin’s web site. Beth and her family are going through the worrisome wait for scan results on Austin’s tumor in his head and they're concerned he may be getting chemoed out. His counts aren’t recovering as they would like, so he needs lots and lots of prayers. He’s a spunky little one like our Ashley and they made a great team for baffling the doctors. We have to pray he keeps them baffled and defies all the odds. Beth is struggling with the ‘what to do next’ and we’ve been there and it weighs heavy on a parent.

Well I’ll stop yapping now and just hope I get up in time to get the kids off to school!


Bye for now.

Wednesday, January 22, 2003 at 10:58 PM (CST)

I was going to post an entry on Monday night, but decided to wait until today hoping it wouldn’t be such an emotional post. Monday was 2 months since Ashley left us. It weighed heavy on our minds, as we can’t believe it’s already been that long. Two whole months since we last held her and spoke to her. Much too long for any parent and the time is only going to get longer.

So with that sappy beginning I will tell you we had an excellent weekend with Kathy and Paul. The place we stayed was fit for honeymooners and was beautiful. Our room was absolutely beautiful and we had too much excellent food! We met a really nice lady who on hearing of Ashley, took the time to pull up her website, read and then sign our guest book. Even now Ashley is touching lives. How cool!

It was soooo cold when we got there. It was –23 without the wind. Eeek! That is hibernating temperatures for sure. We braved the cold and went snowmobiling. This was my first time on trails and I was told they were incredible, so for my first go, I guess I got spoiled. Everything went great the first day and we were out for almost 4 hours. The next day Ken and I went out by ourselves and I managed to send the snowmobile off the trail and down into a creek. Honest, it was the gloves :-). Two OPP trail cops happened to come by and helped Ken get the machine out, so that was all very interesting! They asked what I was doing way down there, I of course told them ‘I had nothing better to do with my day :-)’. It wasn’t a bad experience and I will look forward to going snowmobiling again. Coming home we stopped and saw my birth grandfather, who had a recent scare with pneumonia. He’s on the mend thankfully but is still quite unwell.

We were glad to get home but reality sure comes sinking in fast. The kids had a great time while we were gone. Danielle has the hardest time at nights when we’re gone. Friday night I guess she was up until almost 1:30, but the other 2 nights she was ok. We went for our school interviews on Thursday night and we were so happy. All three kids had excellent reports. Even Nathan! Nathan’s teachers told us since the New Year he seems much more settled. His attention is coming back and he isn’t as hyper. This is obviously good news. We could see he was settling at home, so it was good to hear it’s happening at school as well. Derek’s teacher also said he can see a difference since the New Year. The kids have been carrying such a burden of stress that we take it all for granted. They seem to weather everything so well, but when the load is lightened, we see the light. Danielle, even with all the stress, has always remained excellent in school. So the teacher has no concerns and hasn’t noticed anything out of sorts. So obviously we’re pleased to hear all is going well. We were so happy we treated the kids to their favorite restaurant, the Mandarin. Ken and I got so wrapped up in wanting to take the kids out to express our pride in them; we forgot we have busy lives. Danielle had dance until 7:30 and Ken had to go and load the snowmobiles with Paul for the next day. Derek had plans that night with Chris, his ‘big brother’, so we had to cancel that. We’re not a family who can do spontaneous things obviously, but we managed a late dinner and we all had a great time. Derek did notice that it was the first time we’d been there without Ashley. He’s obviously thinking….

We’ve also made a decision about Ashley’s room. We have no idea what exactly we would do with her room, but we asked Nathan if we could keep it for a while. Being the very understanding child that he is, he said yes. He asked us if in a year or two when we felt better, could he have it repainted as he thought I would now paint the room purple :-). I told him I was going to do it in pink and no he had to sleep in a pink room :-). All kidding aside, no I won’t paint it purple, but I can now put her rainbow and balloons over her door. We may just make it into a sitting room or something, I really don’t know. All I do know is I feel immense relief that I have that room to put her belongings.

I stopped by the hospital today to give the nurse’s and a million other people one of Ashley’s pins. They were so happy to have them. It was really nice to see everyone again. I still haven’t caught up with all of the nurse’s but hopefully will in time. I went for lunch with Jane the social worker and that was really nice and it was so nice to catch up with her. Thank you Jane! Ashley’s clinic nurse and I are going for lunch in February, so I will look forward to that as well. I’m finding it just a tad bit harder each time I go back. It won’t stop me from going and seeing everyone if that’s what I want to do, as the hospital and everyone involved was so much a part of Ashley and our lives. We miss everyone. I had a little cry coming home. I managed to keep it together really good today, but reality hits home after. Oh well, it was a great few hours and everyone is proud to be sporting Ashley’s pin which is the main thing.

So that’s about it for now. By the way, I have the newspaper article of one of the fundraisers for Ashley. The Chamber of Commerce in Waterdown is celebrating their 20th anniversary and is having a dinner, auction and dance. Their proceeds are going to Ashley’s fund, which is so awesome. I guess they had this planned before she passed away and wanted to carry it through. It’s on March 21st and hopefully Ken and I will be up to attending. They’re holding it at the 5 & 6 Fine Dining in Waterdown, so if anyone is interested in going give them a call. There is also a dance being held by Curves in Waterdown. I believe that is in the Waterdown Legion on Feb. 8th. Kathy and I were talking tonight about going, so hopefully we’re up to that one as well. When Ken and I were coming home on Monday, we went through Waterdown and saw Ashley’s name on a sign for the Curve’s dance. What a shocker that was. It was hard to describe, awesome that our little girl is still affecting the community and hard because there was her name up in print. Seeing that sign, it makes us so proud of her! If she only knows and I’m sure she does :-)…

Bye for now,

Wednesday, January 15, 2003 at 07:40 AM (CST)

Hello again everybody. Everytime I sit in front of the computer to do an entry I start to feel bad. We get personal e-mails from people saying ‘they are writing with tears in their eyes’. Those messages mean you care and mean a lot to us. I know you are all coming back to stay connected with Ashley but I do feel badly that most of what I write now is difficult and sometimes heart wrenching. As I always said, I write how we feel, what we experience etc. That hasn’t changed, so please bare with us in the next while as I’m sure Ashley’s journal won’t have those happy moments we are all so used to.

I just needed to get that off my chest before you get out the Kleenex. So what have we been up to? Here’s the first thing. I have been up to no good again. I guess my brain works overtime on some things and they prove to be some of the most difficult things for us to experience. Danielle has been in dance now for almost 5 years. She is still only 9 (almost 10 :-)) but I know if she was older she would have come to me with this. I asked her if she would like to perform a dance at her recital in May in Memory of Ashley. I told her if she would like, she could maybe dance with her cousin Katie (Kathy and Paul’s daughter) if she agreed. Her eyes just lit up and she was soooo excited. So she asked Katie the next day and they are both so excited. I also called the studio and asked Ashley’s dance teacher if she could be the one to choreograph the dance for them. She is very excited as well. She will pick the music as she knows Ashley well and knows what some of her favourite dance music was in class. So yes it is going to be emotional, but wow, what a way to honour your sister and cousin! I know when
they get the recital tape they will always be proud of what they have done. I’m very proud of Danielle as she told me even if Katie had said no she would have still gotten up by herself. She has never performed a ‘solo’ so this showed me how much she understood what she would be doing and how much it means to her. Ashley’s dance teacher said ‘I wish I could dance too’. Could you imagine??? Just her wanting to dance is such an honour to us for Ashley. It shows how much Ashley impacted her life as well. Ashley loved her dance teacher and she was always on a count down for how many sleeps until dance. It meant so much to her. So as I said it will be very emotional, but very monumental to us.

So other than that, I have slowly been crashing. I still manage to get up and get the kids on the bus, but that’s about it. We went to Church on Sunday for the first time again in a while. I now know why we have had a hard time going. I don’t know what it is about being in a Church when you pray, but it seems more meaningful. Well we had our silent prayer at the beginning of the service and that was me ‘toast’. The tears started and they just wouldn’t stop. Normally I can get them under control. Not this time. I’ll tell you what I prayed for so you can understand where my brain is at. I prayed that this was all a nightmare and that God would give Ashley back to us. I write this with tears rolling even now; because I wish for everything that I am that it could come true. We are all missing her so bad. Our extended families and friends too are finding the New Year not all peaches and roses. I know time will heal and I know that God will give us the strength to keep getting up each day, but man is it
ever hard.

So now that you’re all probably crying with me, I may as well let you know what we are having a really hard time with. The move. Talking to other parents and our Social Worker Jane, parents don’t normally go through their child’s belongings to box for quite a while. I have heard from some parents that even a year after, the room remains the same. It takes time and you have to be ready. Well we don’t have that time. We are planning on moving the end of February. So Ashley’s belongings will need to be boxed. That probably won’t eat me up so
much as when we get her stuff to the new house. Ashley was supposed to be in the room next to ours on the main floor. She had already planned out her room. She wanted, just guess :-)…..rainbows and balloons. So I had planned on having someone come in and do the white fence with trees and a big rainbow with a little girl holding a bunch of balloons.

Ken was really worried about having Ashley’s room empty, which he thought would be too difficult for us, so we asked Nathan if he wanted the room. Nathan said yes. I’m now having a really hard time with that. We realize that this may be too soon and we are now in a complete quandary on how to handle this. With Ashley now gone, I knew I couldn’t do the painting all over the wall, but I still wanted the rainbow and balloons. I wanted them put over the inside door jam just so Ashley would know, even though much smaller. I needed to do this probably for me, to fulfill her wish. Nathan we know won’t let us do this, as he is all boy and really if it was his room, it wouldn’t be fair to him. Over and above all that, just having Ashley’s belongings in boxes is just not right. She is still very much a part of us and we need to let those items go when we are ready. So needless to say we’re in a bit of a pickle. I e-mailed our Neuroblastoma group today knowing there were other parents of ‘angels’. I have had quite a few personal e-mails with lots of suggestions. We have to work on this one.

I tried to go to work on Monday. It’s our year-end, of course great timing. Is nothing ever easy in our lives??? Do we actually bring this on ourselves :-)? Anyway that was another one of my boohoo days, so I spent most of the afternoon in Ken’s office crying while we tried to figure out Ashley’s room stuff. Needless to say, not much work got done again. What can I say; I’m pretty useless right now.

On a better note Ken and I are running away with Kathy and Paul this weekend. Friends of ours Bugs and Linda have come through for us again and are watching the kids on Friday and Saturday and our babysitter Thea is taking over on Sunday. So we will be gone for three nights. No kids! Yahoo! Honest, love them to pieces, but we’re looking forward to the break. I have to learn how to snowmobile. Well I actually know how to do that, sort of :-), but now I have to learn how to do it on trails. Should be interesting!!

Anyway, as usual, it turned into a long post. We have our meeting with the teachers tomorrow. Hopefully all will go well there. I’m not expecting the report about Nathan to be too exceptional. He came home with a mountain of homework today. I finally got the answer as to why. ‘But I just said one thing Mum!’ Hee hee. Obviously being punished and couldn’t finish his assignments. Oh well….

We were surprised the other day to hear about another fundraiser going on for Ashley. Then we found out about another one. It’s just incredible the impact Ashley has had on everyone’s lives and believe me it’s very humbling for us that people are carrying on even after she’s left us. I’ll post what I can about them when I have more info.

So I’ll stop yapping now and I’ll let you all know how our getaway goes. Bye for now.

Thursday, January 09, 2003 at 09:14 PM (CST)

Now that our counter is back up and running I am able to see how many people are still reading Ashley’s web site. We are really happy that you all continue to check up on us. I wish I could write so that none of you would shed tears and smile throughout, but this time in our lives is so very difficult.

This week has proved as difficult as I expected. Coming back to reality has not been fun. Ken is busy trying to keep the business going and hasn’t had any time to grieve, which he is finding frustrating. I feel like I’ve just become unfunctional. The kids have headed off to school and they all seem to be doing well. We still need to have our meeting with the teachers that were scheduled for the Friday after Ashley’s passing. Needless to say we didn’t make it and hopefully when we go next week we’ll know a little better how the kids are doing in school. Nathan is a bit of a concern right now. Back last year I mentioned that Nathan needed to be tested for Tourette’s. What I didn’t tell you was that in July of this year we finally saw a doctor at Chedoke Hospital who has confirmed that Nathan does in fact have Tourette’s. This is something that isn’t harmful to his health and he has a very mild case of it, but it does cause him to have tics (habits as we call them). Examples are rolling his eyes sideways or flicking his head, chewing on his cloth’s etc. I know most of this sounds like ordinary things our children do, but he couldn’t stop doing them and the habits would last for a month or two and then he’d move onto a new one. The doctor was a little concerned because of the fact that Tourettes typically comes with ADHD, Attention Deficit Hyper Disorder. In other words, a little hyper. Nathan doesn’t have a bad or angry bone in his little body, but he can be very distracting and hyper. He doesn’t know how to sit still and is constantly talking, talking and more talking :-). This all doesn’t sound bad does it? It’s not. We had a choice to put him on medication and as of right now, we have decided not to.

The reason I’m telling you all of this now is just days before Ashley passed away we received a call from his teacher. I had explained at the beginning of the school year what he had and what the implications were. I also explained that we wanted to keep him off any med’s and just keep us informed as to how he was doing academically. That has been our greatest worry. Nathan is very bright. Unfortunately he can’t sit still long enough to concentrate fully on his work. The month of September was good for him. The teachers couldn’t tell there was anything out of sorts with him. Well I guess October was a whole new story. The teacher asked me if stress makes his condition worse. I told her definitely. So since October Nathan has become a distraction in class and they have had a harder time trying to control him. We were hoping after Philadelphia that we would be able to concentrate more time on Nathan but life obviously didn’t take that turn. This week he actually does seem somewhat calmer, so maybe his stress levels are dropping, as our life seems to take on what we now call ‘normal’. So we’ll find out next week how he’s doing and take it from there. Sorry I never told any of you this before. Ken and I struggled with letting everyone know, only with the fear that he would become ‘labeled’. He’s an absolutely wonderful boy and hopefully he will learn as he grows up to control this on his own.

So with all that said, what have we been up to this week? Not much really. We have finally been able to get our children to bed at half decent times. I managed to get a sinus infection and a chest cold. So I have been unwell for almost a week now. One of the ladies in our church has brought us a meal once every two weeks since Ashley passed away. What a sweetheart! Almost each time she has brought the meal I have happened to have had a bad day or like yesterday, was unwell. Thank you so much Gerda!

I popped into the hospital on Tuesday to see Beth. Austin was finally getting his chemo and Beth and I snuck in a lunch. Everyone is always so friendly and happy to see me when I go. It’s like coming home to family. I didn’t stop to chat with too many this time, as I knew this week was a difficult one for me. I will be going back within the next couple of weeks though. I finally got in some pins that I had ordered at the same time as the bracelets. They are gold ribbon pins with a heart in the center and Ashley’s name on one side and ‘Forever’ on the other. We’re pleased with them and I promised the nurse’s that I would bring some in. The gold ribbon is for childhood cancer.

So that’s about it for now. I probably had a lot more to say, but I won’t depress you all. I am going to attempt to finally get those pictures up of Ashley’s Christmas tree. I’m also going to put a picture up of all the balloons when they were set ‘free’. We have so many pictures of Ashley. It breaks your heart just looking at them, but I’m going to try and put new ones up fairly often. I’m sure I’ll be putting up some that have already been posted, but I’ll rotate them as often as I can.

So take care everyone and I’ll talk to you soon.

Thursday, January 02, 2003 at 09:13 PM (CST)

Happy New Year everybody! I can’t believe it’s a New Year already. I’m trying to remember everything we’ve been up to and my brain is empty. I’ll write about what I do remember. Saturday night we went out for dinner with Rob and Joyce and Cliff and Esther and we had a really good time. Dinner was excellent in a restaurant we had never eaten in before, and then we went bowling. The music for the first hour was our age :-), so all in all it was a good night. Sunday we were again at Kathy and Paul’s and we tried to get the kids in bed half decently early.

Monday I think I went to work. Pretty bad when you don’t know what you did!! I remember driving home from that direction and knowing I still needed to do things that night. We had arranged for Steve (Kathy and Paul’s son) to baby-sit thinking Jackie my birth Mom was coming down. She was delayed until the next day but we kept him and went out ourselves. I think it’s the first time in many many years that Ken and I did the groceries together. I can tell from the grocery bill! We were buying for the house, for New Years and for some dinners that we had invited people over for. By the time we were done shopping I didn’t have a clue what was in the buggy. My brain was fried. I didn’t handle working my brain during the day and then again at night. All you men think grocery shopping is so simple. Sometimes not! Anyway we snuck a late dinner in, just the two of us, which was nice but I was ready for bed.

So Tuesday, New Year’s Eve day was busy. I went and picked up my friend Andrea and her boys to spend the day with us. My birth Mom Jackie and her friend Bud came for a quick visit in the afternoon. We took them to see Ashley’s tree and they had to get back up North with the weather coming. It turned really icy around our house. When I took Andrea back home around dinnertime, it was pure ice on our road. I was getting worried for everyone coming down our way for New Years.

New Year’s Eve party was at Kathy and Paul’s this year. I don’t know how many adults there were (I think around 20?), but there were 22 kids. Eeek! They were all excellent though. It was amazing that there could be that many children and the house didn’t get wrecked. It was a really good night. Ken and Paul have started a new thing. Ken has been perfecting a sauce to cook mussels. Paul gets the mussels and Ken cooks up the sauce. Well we think he’s perfected the recipe. What a sight to see. Everyone that likes mussels was digging in as if they were starved!! I personally can’t stand them, so I couldn’t relate to what they were all moaning about :-). We all had a great time playing darts as well. It ended up being a garage party with the dartboard. The actual count down to New Years didn’t go quite as well for us, or me particularly. I was doing just fine up until 4 minutes to New Years then I just couldn’t do it. Kathy and I went out to the garage crying and Ken went to be with the kids. I felt really bad that I set everyone off, as they all made their way into the garage to find me, but there was just no way I could be happy about a new start etc. etc. Everyone always wishes you a happy new year but to us our lives will never be the same. That was a little hard to deal with and we hurt. We were able to shake it off as we’re learning how to do and carry on. We were there until the ridiculous hour of 5:00 am. All in all it was a good night and having everyone with us was even better.

The next day was obviously sleep in day. We had my brother Steve, his kids and in-laws over for dinner. I thought we were going to end up having take-out when everything seemed to be going wrong for me, but dinner worked out well in the end.

Today we went over to Austin’s house. The kids are all around the same age other than little Erika. I realized that before that used to be Ashley when we had friends over. All our friends have kids the same ages as our older 3 and Ashley was typically the odd one out, not that she ever let that stop her :-). It doesn’t seem to stop Erika either! They had a great time and we headed home not knowing what the roads would bring us. We thankfully made it home before all the bad snow set in. The roads were worse by us than where they live, so I was glad to be home.

So that’s our lives right now. I can’t wait for the kids to go back to school, but in my own way I’m dreading it. That’s when holidays are over and life’s supposed to return to normal. I don’t know what’s normal anymore and I have so much to do and it all weighs heavy right now. I’m feeling a little overwhelmed with life in general. Hopefully I’ll kick back into gear next week, so I can start getting some of the many things I need to do, done! Rebecca’s family is coming for dinner on Saturday night and that should be nice. We haven’t seen their family since Ashley’s funeral. Rebecca is still continuing to do well, other than the doctors need to figure out how to fix her arm that is still broken. They need to obviously put her under to fix it and they still don’t know why her heart crashed the way it did the last time. They aren’t sure if it was the anesthesia, so they are scared to put her out. She’ll see in February when she see’s the doctor next.

So that’s a full update I think. I’ll let you all know next week how ‘normal’ we get.

Bye for now.

Friday, December 27, 2002 at 10:30 PM (CST)

I feel like I have so much to tell you today. I was anxious to write it all down yesterday, but our Christmas season has been so busy, time just didn’t allow. It has almost been a week again since I last posted so I’ll try and remember day by day what our family was all up to.

Sunday was a quiet day. I actually slept almost 13 hours! Eeek! I must have needed it. I knew that some sort of bug was trying to get me, but I think that sleep blasted it all away! Monday was just a last minute shop day and Tuesday of course was Christmas Eve day, which was a busy one for us.

Tuesday morning I went into the hospital to play Santa. It was so nice to see everyone again, as it has been a long time (for me anyway!). I had bought Christmas tree ornaments for all the doctors and nurses in the clinic back in October. I had totally forgotten that I had ordered them, but very glad when they came in. I wrote Ashley’s name on the back with her dates. I was going to arrange for some squares or something for the ward, but not going in on the Friday messed up those plans. Every time Ken and I had take out food or treats that people came in with, we tried to share with the nurse’s. I always assured them that it was all low-calorie :-). So I was disappointed I wasn’t able to send them something with a card saying ‘honest, low-calories!’ So with those plans botched I sent 2 vases of pink roses to the ward. One for the front of the ward for the secretaries and EA workers and one vase for the back for the Oncology nurse’s and everyone else associated with Oncology. I stopped by to see them and they loved them. One nurse wanted to take one home to remember Ashley. I thought that was sweet. There were only 3 nurses on shift that I was close to, but we managed to stand and chat for a while. I even went to the back of the ward, which I was quite proud of myself for. I haven’t been back on the ward since Ashley passed away, let alone to the back where her room was. I survived! I had cards and pictures for some of the other people that played a role in Ashley’s life. I dropped one off where she had her finger pokes done and then down to Nuclear where she had all her MIBG scans done. The girl’s down there were so happy to see me. I haven’t seen them since before we went to Philadelphia, so it had been a while. We all managed to get through that visit without crying, but barely! I had a special gift for the social worker and our child life workers. I can’t tell you what I got for Jane (the social worker) as she wasn’t there, and I know your still reading Jane :-). Anyway it was a good visit and I got to see Beth and Austin too, which we hadn’t expected. Austin almost ended up being admitted with a fever, but thankfully he wasn’t neutropenic. I had a bracelet for Beth and I was worried it would be a while before I would see her, so I managed to do that too. So I accomplished a lot that morning. Next I was off to pick up the fresh flowers I wanted for Ashley and my Mum and Dad for Christmas day. Then to work for our Christmas Pizza party we always have. It was a really busy day. We left work to head to Kathy and Paul’s for Jacob’s birthday. We stayed there through suppertime and then came home.

Now came the hard part. We got all ready for our first Christmas without Ashley. It was sad. We all missed her like crazy. I lit the candle beside her picture and then went up for a cry. Danielle did the same a few minutes later and Ken had his cry later in the night. We managed to get through opening the presents and the kids were all pretty happy with everything they got. I tried to hide my tears behind the video camera, but Danielle caught me a few times. This was the first year that Ken and I had presents from the kids, and we didn’t know what they were. So that was fun and they were great presents! We even managed to sit and play some games with the kids, so we’re quite pleased in the end with how it all went. Danielle and I have made a decision. When we were having our cry together, we decided what we were going to do with Ashley’s Chu Chu doll. This is one present I knew I wouldn’t be able to give away. I need to keep it in the house. Danielle is a little old for those type of dolls, but we decided we were going to share her. I told her daddy wouldn’t be very happy if she came to sleep with me, so Danielle would keep her and play and cuddle her if she needed to and I would come and have a snuggle if I needed to. We’re both pretty happy with the arrangement and Chu Chu came out of her box yesterday. We both had a cuddle :-).

We were really pleased to get up on Christmas morning to see all the new fresh white snow. That’s an awesome way to start Christmas day. Our church got cancelled due to the weather and we just took it easy in the morning. The kids opened their stockings and caused a big whopping mess in the house :-). We always go to Ken’s Mom and Dad’s house on Christmas day for coffee and then we head off to do Christmas with my side of the family. Well with all the snow we ended up packing up all the snowmobile gear and taking the snowmobile’s with us. So we were there longer than I thought we would be. I was starting to get stressed. I had originally planned on going and seeing my Mum and Dad after that. Well the roads weren’t great and I’m not very experienced with Ken’s 4x4, so I didn’t think driving into Burlington was a good idea. Then I was told the cemetery probably hadn’t been plowed seeing as it was still snowing. So I had to let go of those plans, which upset me. Then it was off to see Ashley. We were so surprised when we got there. Some people had put ornaments on her tree, which was so incredibly nice to see, but our biggest shock was to see two hoola hoops there. One was purple and one was pink. The purple one was around the base and the pink one was laid across the tree. I would love to know who did that!!! Ashley had the hoola hoops on her Christmas list. It was second on her list after the real cell phone, so seeing those was just incredible. We’re very curious who knew that she wanted those. We can only think of a few people, so if whoever did that wants to tell us, we would love to know. If you want to keep it a mystery that’s ok too, but we’d love to say thank you.

We left there sad. I don’t know why it hit me harder on Christmas day than it did the night before, but boy was I upset. I didn’t think I would get through Christmas at my brothers, but we all managed. I was upset the whole drive to Brantford, but not long after managed to shake it off. The kids got a very special present from Papa Stan. It was a picture of my Mum and Stan taken a few years ago. My Mum has been so lost in the shuffle of the last few months of our lives, that when Stan asked what he should get the kids, I suggested the picture. The kids loved it. They all got an envelope after, which we had given them from Grandma. It was some money she had left them all. They were speechless. It was a nice way to end our opening of the presents for the kids. Grandma had her moment, which I was glad for. Driving home Derek said he was really glad Papa Stan had given them a picture of Grandma. He thought it was a great present, so I was pleased. We stayed there late playing games, so it ended up being a good end to our day.

Yesterday was a lazy morning for everyone except Ken. We all slept in and he went off to do something with his snowmobile. Ken and I went back up to see Ashley yesterday afternoon as when we went on Christmas day we were tight for time. It was nice to take some time to actually look at the ornaments that have been placed. There are two bags’ under the tree with little stuffed animals. Someone from Camp Trillium had put up a handmade ornament with Ashley’s name on it. It’s beautiful and they put a card with the chorus from the song we always sing when we’re at camp. It’s beautiful and made us smile with tears. We are so proud of our daughter! There aren’t even enough words to tell you how we feel. We have always been proud of her, and we know how much everyone loved her, but seeing how everyone still wants to include her in their lives is so awesome. Even though she’s not with us anymore, we can continue to be proud!!

We went to Kathy and Paul’s again in the afternoon as it was Steve’s 16th birthday. At this time of the year it feels like we should just camp out there for the Christmas season. It was a nice night, playing games etc. The kids managed to do some more snowmobiling, so they were happy.

So that’s been about it for us. That was a long entry. I told you I had a lot to write about. Beth brought her kids for a visit today. That was nice. We all went up to visit Ashley. Poor little Erika doesn’t realize that Ashley is in heaven. She’s only 2, so of course she doesn’t understand that Ashley’s not here. Austin explained it to her the best. He’s a pretty smart little guy. He told her she’s at a friend’s house and his name is God. Pretty good answer for a seven year old!!!

So that’s it for now. I’ll write again soon. We’re off out again and it’s nearly 8:00. The kids are getting used to late nights!!

Bye for now.

P.S. We felt kind of silly, but we actually took a picture of Ashley’s Christmas tree and the flowers. I’ll post it hopefully in the next few days.

Sunday, December 22, 2002 at 05:52 PM (CST)

It’s been almost a week since I posted. Wow, that’s a long time for me. Our days have been busy as usual. Tuesday I actually went to work for a while. Not that I really accomplished anything. Wednesday Nathan woke up sick and with a fever, so my day didn’t go quite as planned. With his Tylenol he was reasonably ok to be out and about and I had a few things I had to do. We also managed to go to the afternoon Christmas program. He wasn’t well enough to participate but he sat with me. It was a beautiful program. I cried when all the kids came in, and managed to get it together. I cried again when the little ‘angel’ kindergarten girls came in. They came up the middle isle right where I was sitting and they danced and twirled they’re way up. I wasn’t expecting that and I was so sad that Ashley couldn’t be dancing with them. I can’t believe I managed to get through that one. I sat on the end incase I needed to make a hasty exit. By the end of the service Nathan wasn’t feeling well again so we were up and down a few times which I think helped me get through it.

Thursday I went to pick up Ashley’s flowers and went to lunch with a girlfriend. That night was the Christmas program again, and it was Ken’s turn to go. The rest of the family all went that night as well, so it was an emotional night for all of them. The ‘angels’ did them all in as well. Ken too had a hard time with the little girls. Kathy said something very profound. The last song that the school sang was ‘Halleluiah’ and she said they sang it with so much feeling and love that she knew and felt that it was reaching Ashley up in heaven. She found that comforting as well as emotional.

Friday I had planned on going to the hospital to play Santa. I had gifts for the clinic nurse’s and doctors and I haven’t seen them all in a while, so I was quite looking forward to it. I woke up in the morning feeling warm. Nathan had been off school since Wednesday having low-grade temperatures, and I thought I had finally caught it. So I couldn’t take the chance of going into an Oncology environment and possibly bringing a virus with me. I was quite disappointed but am planning on going in Tuesday morning now. So I managed to go out and do my groceries. It’s the first big shop I’ve done in I don’t even know how long. I’ve decided grocery shopping is going to be something I don’t handle very well. The last time I picked up some things I was in Walmart. This time it was a proper shop and there of course were a million things that brought back so many memories. I had tears rolling as I shopped, and I actually thought I was going to have to leave my buggy and go. With some determination I finished, only because we really needed the food!

On the way home I stopped to put Ashley’s flowers up. It was soooo windy! The Christmas tree has withstood all the wind and the ornaments are still all on, which I was pleased about. I put the flowers in as best as I could and left an emotional mess. It finally caught up to me and boy did I cry. Thank goodness Thea our babysitter was at home with the kids. She took over getting all the groceries in so I could have my moment. Thank you Thea! That night was our Christmas with Ken’s family. It was a very nice night. We managed to get through it because of the kids. They carry on as we all have to. The kids all had great gifts. The kids pull names every year and we had done that before Ashley passed away. So Steve (Kathy and Paul’s oldest son) had Ashley’s name and Ashley had Janine’s name. We decided not to change all the names around to exclude Ashley, as Steve wanted to get us something special. Well did he ever do a good job. He bought us a beautiful stone with these words engraved on it “Love is an eternal flame. Burning and flickering into the night. Everlasting light”. It’s designed to hold a tea light, which I have put next to Ashley’s picture and can light in memory. It’s really a perfect gift so thank you Steve. We bought Janine’s gift from Ashley, which was two parts. One went under the tree and was something she’s asked for on her Christmas list and the other, from Ken and I, I put on her pillow. It was a really nice framed picture of Ashley. She found it later in the night and when I went to check she already had it set up with candles lit by her picture. It’s amazing how just giving a picture can mean so much.

I had something special for Ken’s Mom, Kathy and Danielle, Katie and Janine. I had bought a bracelet for all of us from a company called Gold Ribbons. This company was started by a Mom who lost her child to cancer about 7 years ago. It’s logo and main item are gold ribbons that stand for childhood cancer. She has designed and makes bracelets with a child’s name on it now as well. It also has a small gold ribbon on it. So I ordered one for all of us with Ashley’s name on it. We all now proudly wear this bracelet. It meant a lot to give it and I’m pretty sure it means a lot to wear it.

So this week will have us at Kathy and Paul’s a lot. Jacob’s birthday is on the 24th and Steve’s is on the 26th. We are planning on opening our present’s Christmas Eve and I’m sure we will survive that as the kids really do help us overcome our grief. They are so excited to open their presents. Christmas day will be spent at my brothers. I knew we couldn’t handle having Christmas day here so I asked him to have it this year. We always go to Ken’s Mom and Dad’s for coffee after church and this year I need to go up and see my Mum and Dad and then Ashley before we go to his house. It will be an emotional day for sure, but we will get through it.

I had to go back and get Ashley’s flowers, as they didn’t withstand the wind. We have to put them back in with some pegs to secure it. We’ll hopefully do that tomorrow. I wasn’t too impressed with them, but they’ll do for now until next year when I can spend a little more time on knowing what I really wanted.

Ken is just now decorating our tree with the kids. Wow are we ever behind. Ken had a lump removed from his back surgically in Tuesday. Don’t worry it wasn’t anything cancerous, but it caused him some discomfort and we weren’t able to get the tree up. Actually we had an elder and a deacon from our church come on Tuesday night to see how we were doing and they brought us a nice gift basket. They offered to put the tree up for us, but do you think we could find our tree stand anywhere???? Ken finally found it on Thursday but it’s taken until today to finally get it up and decorated. The kids are having fun and they’ve been really good at not pressuring us too hard for things (except opening the presents of course!).

So I’ll try and write sooner if I can. I can only end this by wishing everyone a Very Merry Christmas! Wishing you all happy holidays. I can’t believe everything that happened to us in 2002 but we couldn’t have gotten through it all without you. So thank you all from the bottom of our hearts for all the love and support and we are hoping for a more peaceful and happier 2003 for everyone.

Bye for now.

Oops, I forgot to mention something. Flamborough Information and Community Services (FICS) have been accepting donations for Ashley since we were in Philadelphia. They were kind enough to set this up for us so that people donating to Ashley’s medical fund could receive tax receipts if they wished. They are closing that at the end of the year so I just wanted to take this opportunity to say thank you to them for setting that up and for the administration that went into it. It was very comforting for Ken and I to know that if somebody wanted to contribute that they had a choice on how to donate. So a big thank you goes out to them. We know there were some fundraisers still happening, so if anyone had planned on using that company for a taxable receipt please let us know by e-mailing us and we will send you in the right direction or you can call our good friend Michelle who has thankfully been looking after Ashley’s Medical Fund. Her number is (905) 628-9113. Ashley’s account will remain open for the fundraisers in the New Year but anyone wishing taxable receipts only have until Dec. 31st. So if you need any information Michelle has told me she will happily provide it.

Tuesday, December 17, 2002 at 06:58 AM (CST)

I tried to post this last night but Caringbridge was down.

This entry finds me sitting finishing off my Christmas cards, and just feeling blue. I’m still not quite sure why you are all returning to read about depressing thoughts. I have tried so hard over the past year to always be honest and true, but to try and keep positive attitudes for us and everyone else. Christmas is drawing closer and I can feel almost by the minutes how devastating it’s going to be. The prayers and support that are still continuously coming our way I’m sure is what is keeping us afloat. We are still managing to get up in the mornings and go about our days, so this is a good thing. I must admit our days are still not what anyone would call normal. The family rarely has seen a cooked meal yet. We are still rushing here or there. I’m actually glad that it is a busy time of the year or I’m sure I’d be completely lost or mental right now.

Ashley’s Christmas tree is finally up. The weather warmed up enough that we were able to put it solidly in the ground (well, hopefully). We took the kids with us and it was difficult for Ken as he finds it a little more difficult to visit her, as he miss’s her too much. We both had tears, but we’re happy she has it. I think she has the only Christmas tree there. :-) It took quite a few hours to prepare as each ornament had to be securely tied on. Thanks again to Kathy for the help. We managed to get through it and have our cries after. I have had people ask me if they can place on ornament on the tree. By all means. We shared Ashley with all of you over the past 3 years and it would still be an honour to continue sharing her. We are hoping she has found an everlasting memory in all of you and we are more than willing to share in the sentimental moments. Just to forewarn you though that the tree is only 3 ½ ft tall and can’t really hold heavy or large ornaments. If someone would like to go and doesn’t know where it is just e-mail us and I’ll give you the info. Ashley’s silk flower arrangement is still coming as I went to pick it up and was quite disappointed. The hearts were smaller than I pictured and there weren’t enough flowers on it. So I asked them to have another go at it. Hopefully that will be ready this week. In the New Year I will attempt to make my own. I’m not very crafty but I’ll see what I can pull off.

So only 4 more sleeps until the kids are out of school. With no snow, I’m not sure if I’m looking forward to it or not. I know we had snow today, but it will be gone before Friday I’m sure. We are celebrating Christmas with Ken’s family this Friday. We normally have it at Ken’s Mom and Dad’s house but the memories would be too fresh and hard to deal with. Another moment that I haven’t written about yet in Ashley’s last few days. She was lying in bed in one of her sleepy times and she mumbled ‘Mum, I need to talk to Oma about Christmas’. Oma was there and quickly came to the bed. She asked Oma if she could sit on their brick fireplace when they opened presents and could they roast marshmallows after. This makes me cry just writing it, so I’m sorry if it does the same for you, but there were so many plans that she was making and we knew they wouldn’t happen. It broke our hearts. We would love to have had it there and placed a picture in her ‘spot’, but it would be devastating for all the adults and the kids deserve at least an attempt at a joyous Christmas. So we’ve moved Christmas to Kathy and Paul’s this year.

We went to the Nutcracker on Friday night with Help A Child Smile. It was great but one little girl that was bald almost undid me. I was actually not feeling well either, which didn’t help. Derek was off school on Friday and him and I spent a better part of the weekend in bed. I did manage to get out and buy Ashley’s Chu Chu doll. Derek was with me at the time and he asked who I was getting it for. I told him for Ashley and obviously he was confused. When Danielle found out she asked the same question. I had to answer both of them that I just couldn’t get through this Christmas without buying her something. They wanted to know if we would put it under her tree. Unfortunately it wouldn’t survive that, so I will just tuck it away right now until I know what I want to do with it. The kids seemed to understand my explanation. I wish I knew what went on inside their little heads. Danielle is getting more headaches than usual. Derek seems to be doing all right and little Nathan; well he’s just typical for his age. I have a hard time saying his prayers at night as he almost immediately dropped Ashley’s name from his prayers. That is so hard for us as we don’t want him to stop praying for her, but I’m sure it’s one of his mechanisms for coping. Again, who knows.

Today I managed to get all the presents wrapped so I’m almost good to go. I have a few more things to run out for but I’m sure we’ll be ready for the weekend. Our Christmas tree managed to make it to the house, but is undecorated right now. Hopefully tomorrow night. Another thing we are unfortunately not looking forward to doing. We have the school’s Christmas Program on Wednesday and it sounds like it’s going to be incredible. That too will be another difficult moment. There are going to be too many in the next month. I try to give my head a shake and remember that we aren’t the only one’s going through all this. There are so many families and some close to us that also are experiencing this torment this year.

Well now that I have depressed all of you right before Christmas, I guess I’ll go now. :-)

Thanks for keeping on reading and hopefully the next one will be more upbeat. No promise’s, but hopefully. Just a quick thank you. I received an e-mail from a gal from Flamboro Skating Club this week. The senior skaters and I’m sure many more, fundraised for Ashley, and the club offered to match whatever they raised. Well we’re humbled again. Ashley has touched so many lives and it’s so awesome to hear that, and see that, especially from the young people. Janine is continuing the fundraising she had already in place before Ashley’s passing. She is coordinating all the HDCH kids in selling Krispy Kreme Donuts for Ashley. Most of Ashley’s fundraisers have been from our younger generation. Doesn’t it make you proud??? You’ve all raised pretty awesome children that they are quick to jump at helping others.

Ok I’ll stop writing now. In the guest book is a poem that the Cannon’s wrote for us. It’s beautiful. If you haven’t seen it, you might want to go and read it. Thank you all for your continuing comments there, it helps Ken and I.

Now I’ll really stop writing! Bye for now.

Thursday, December 12, 2002 at 11:10 AM (CST)

This entry actually finds me sitting with a few minutes to spare. It has been so busy around here it’s not even funny. I have no idea what I am actually doing that seems to keep my days so full, but time just seems to be running by me.

I survived Christmas shopping (barely). Kathy (Ken’s sister) and I have every year for I don’t know how long, have done our shopping together. With both of us having 4 kids you can imagine how full the van gets and the buggy’s when shopping. I am normally prepared with a list of what to buy and for who, but I went in quite blind and still managed to get all but 2 gifts done, in one day. I’m pretty impressed with myself. I think what helped this year, was the kids draw names from each side of the family, and I end up having to take them shopping as well. Well this year I didn’t have to do that. We have some wonderful friends who have taken our children under their wings and took them shopping for us. The kids had come home from school saying they had picked names in their classrooms as well. It mind boggled me as they bombarded me with ‘can I get them this or that’. Well I didn’t end up having to deal with any of that and it was so great! They even sat and wrapped them all up with them, so the kids have done their shopping and are quite pleased with themselves and they had one on one time doing it, which was even better!

I struggled with wanting so desperately to buy Ashley a gift. She was saving her money from her nail salon to buy a Chu Chu doll. I actually bought her that for Christmas last year but, of course, it was the wrong one. She wanted this little doll so badly. I know before the next week is out I will have bought it, just because I need to. I have no idea what I will do with it, as it can’t be with her, but I just can’t get through this Christmas without getting her something I know she so wanted. The big brown ‘Bear’ as I called it went with Ashley. I had bought her that when I went to Chicago to help take away her pain. Well the Monday after her service I was back at the hospital buying myself one. Bear really does help ease the pain. When I’m feeling sad I go have a cuddle with him and it makes me feel closer to Ashley. I’m sure if I bring Chu Chu to bed Ken may start protesting :-) so I’ll think of something…

We had Nathan’s birthday party last night. Ten little 8 year olds. We took them 10 pin bowling and they seemed to have a great time. One gift I bought for Nathan for Christmas needs to go back, as it was a birthday gift last night. Oh well… :-)

I even managed to go to work on Monday. Christmas cards needed to go out and every year I struggle with how to get those labels printed properly. So I procrastinated as long as possible and gave in on Monday. It took me 5 minutes to print. Figures. My brain actually functioned enough that I figured it out easily and we were able to get those done. I’ve been trying so hard to get my thank you cards done from Ashley’s funeral, but with Christmas here, my Christmas cards took priority. I nearly have our personal ones done and then I can get to work on the mass of thank you’s that I’m looking forward to sending.

I spoke with our social worker yesterday from the hospital (that’s you Jane :-)), and what a treat that was. No one probably realizes that when you have a child in treatment for so long, the relationships that are formed. She wanted us to know she miss’s us and was thinking of us, which was so nice. I know as parents, when we lose a child, we don’t only have that loss to deal with, but also a way of life. That hospital has been the main part of my life for the past 3 ½ years. So we as parents actually deal with 2 losses. I think I’m fortunate I’m busy right now or I’d be on their doorstep constantly. It is also for the staff members difficult as they grow to know and love our families and they too suffer a loss. It is all part of their chosen professions, but that doesn’t make it any easier for them. I will be back in before Christmas to see them I’m sure.

Help A Child Smile offered us tickets back in September to see the Nutcracker in Hamilton Place. I had ordered tickets for the whole family, knowing Ashley would love to see it. She had the movie ‘Barbie and the Nutcracker’ and watched it over and over. We had arranged to go at the same time as Rebecca’s family so they could sit together. Well I’ve decided we’re still going. The boys of course aren’t interested but I’m taking Danielle, her Oma, Kathy and a few nieces’. I hope I manage to get through that one ok, which I’m sure I will, but of course I will wish Ashley had been with us. I know she would have loved it.

I’m sorry most of you probably missed lighting the candle last Sunday. I know I posted it on such short notice. It was very symbolic and I did take some time to reflect on how many children this world has lost. Don’t get me wrong, I cried at they injustice of losing Ashley and wanting her back with me, but I also realized something else. We were actually fortunate knowing for 3 ½ years that this was a possibility. We were able to spend so much quality time with her. So many wonderful memories. There are so many parents that lose a child suddenly or violently. They must go through life with so many regrets. Regrets that they didn’t tell their child one more time that they loved them, or regrets that their last words were harsh, or could they have prevented it somehow, someway. We don’t have any of that. In my conversation with the Dr. when I was in the other night, I was able to say, we don’t have any of those regrets. We know the Doctors and hospital did absolutely everything they could and we know as parents we did absolutely everything we could have. We are at peace with that. We also know she went to heaven knowing how much everyone loved her. From all the visitors and support in the last few days of her life, she knew, and the night that she left us Ken and I had to have told her hundred’s of times in just a few hours. No regrets…

Wow, I didn’t plan on getting all mushy on you guys. It’s amazing how it just seems to flow sometimes. I may have repeated myself, as I can’t remember what I write sometimes. I’ll stop yapping now and get to what I’m supposed to be doing. Ashley’s flowers are ready for pick up and I need to go and put them up. The kids all have a dentist appt. this afternoon and dance after that. People to see, places to go, things to do. Doesn’t seem to end.

Bye for now. :-)

Saturday, December 07, 2002 at 04:14 PM (CST)

Well this entry still finds us functioning. Not a minute goes by without thinking of Ashley and missing her, but life is continuing. Our counter seems to have started over in our Caringbridge page but I can see many of you are still coming to Ashley’s web page. Thank you all for that, and for still giving us uplifting comments in the guest book. What we have done without all of you and the support?

I left Ken Bosveld’s eulogy up so long because I realized how I could read it over and over again and it still uplifts me. I hope it had the same effect on all of you too. I still can’t bear the thought of having to go through life without Ashley, and I struggle with the fact that I still want to just bring her home. We know she is happy where she is and we picture her playing with all her new friends and some she knew. My Mum and Dad surely are looking after her and I’m sure my Mum is even sporting a fancy nail polish job by now. :-)

We have been really busy just getting on with daily life. We actually struggle with the guilt that goes along with that, but life must go on. We are busy trying to get the house finished for moving in to. We’re hoping by the end of January to be moving, so that too will be chaotic. So I have been running around trying to figure out the interior of the house. I finally have that sorted and have to switch gears on getting ready for Christmas. I wish it was just over. This year will obviously be very difficult, but for the other children it still needs to be fun. Shopping is going to be disastrous for me, especially after Ashley giving me her detailed shopping list just days before her passing. Ken has been very busy trying to sort the company out. He’s only been partly there for so long he needs to get back into it all and make changes in the company. He’s finding it mind-boggling and sometimes too much, but again, life must go on. When my mother passed away a few months ago, I wanted everyone and everything to stop. That would be nice right now if we could just press ‘pause’ and life give us all time to adapt.

Ken and I have also been busy trying to get Ashley’s Memorial Stone arranged. We found out that the last pouring of the foundation was the end of October, so her headstone won’t be placed until the end of May. So that has given us some time to design etc. We actually bought 3 plots at the time of Ashley’s death, so Ken and I could be on either side of her. What we didn’t know was by doing that it became a family plot. This means we can only have one headstone. I wasn’t sure how I felt about that. I’ve struggled with being happy we’ll all be on one and also frustration because we wanted certain things designed and now with needing to put three names on it will be more difficult. Well we’ll figure it out. The good news about all that is we actually found a stone that has a marble look but has a purple hue to it! She would love it. The place we’re ordering it from is going to take a digital picture of the stone and e-mail it to Italy, (I guess this is where most of the stone comes from) just to make sure they get the right tint of stone. This stone is actually all from the same cut but can come in blue and grey as well, so we’ve asked them to dig deep to find the right one.

I was also busy trying to get a silk flower arrangement made for her. The ones the Memorial places sell are just so typical and fake looking. So I asked our florist that we deal with the make her a special one. It will have three hearts with lots of pretty flowers on it. I’m looking forward to that, as it will be difficult not having her headstone for some time yet. I also went out and bought Ashley her own Christmas tree that I can put up every year. I picked up some decorations for it today and next week will figure out how to make everything really secure on it and enforced to stay in the ground.

Is this all bothering you? I hope I’m not depressing you all with all this talk. I’m so used to sharing everything with you that it doesn’t seem to bother me writing it. I hope it still helps you feel a part of Ashley as well.

There was a fundraising youth dance the week after Ashley passed away. I really don’t know any of the details of it, but thank you to everyone that went. It was arranged before and they decided in memory of Ashley to carry on. That meant a lot to Ken and I. We are leaving Ashley’s bank account open for the fundraisers that are still planned and any monies are going to be donated to another Neuroblastoma child that is also in need of treatment out of country. We know Ashley would be incredibly happy at the thought of helping another child and hopefully helping to save another child’s life.

I’m sure the next couple of journal entries may be difficult as well, as this Christmas we will experience the void and emptiness that so many other parents have had to endure. The cards of support that we have received has overwhelmed us. They were all sent with true sympathy and compassion and we can’t thank you enough for your continuing thoughts and prayers.

I had originally started this entry with the intent on going through all my notes about Ashley’s last few days. That has proved to be too difficult and I will hopefully be able to write about them soon. I have already posted a few; so there aren’t too many more but those last few days almost seem like a fog now. I took the kids in to see their Child Life worker Maria the other day. They seem to be doing ok. Isn’t it great that we still have those resources available to us? This hospital has always been so incredible with the support for us as parents and the children. I actually bumped into one of Ashley’s oncologists when I was there. I had heard he came to Ashley’s service and this meant so much to Ken and I. We know they lose so many children and they can’t possibly become too emotionally attached but Ashley wormed her way into his heart. We had a really nice talk. He was the doctor that first diagnosed us in July of 99 and he was the doctor that had to have the ‘talk’ with us. So he was there from start to finish. He spent at least ½ hour with me and it was very comforting.

With Austin now battling a new tumor I’m sure I will be seeing the staff a fair amount. They are all like family to us and for all us cancer Mom’s it is actually very difficult to give up. I promised them I wouldn’t be there too much, but they were stuck with me for a while :-).

I’ll stop writing now, but I just read an e-mail from another Mom on our Neuroblastoma group. Her son just passed away on Dec. 1st and my heart goes out to them. She told the group about something an organization called ‘Compassionate Friends’ started in memory of all our children in Heaven. At 7:00 pm on Sunday December 8th, everyone will light a candle in their memory. It starts in New Zealand and with all the time differences the lit candles will encircle the world. I think that’s pretty neat and I thought you all may want to join us in lighting a candle for our precious little Ashley and all the other little ‘angels’.

So thanks for continuing to check up on us. I will keep writing as long as I have something to say, and for everyone who knows me well enough, that’s probably a long time :-).

So bye for now.

Monday, December 02, 2002 at 02:37 AM (CST)

I’m writing this at a late hour and feeling really sad tonight. Grief comes in all sorts of shapes and sizes and none of us know what to expect and when. Danielle has the hardest time at night when it’s time to say her prayers. She used to always pray for healing for Grandma and Ashley. She had to stop praying for a miracle for Grandma and has now had to stop praying for a miracle for Ashley as well. This is so difficult for her and how do we as parents help her when we don’t even know how to deal with it ourselves? The boys are carrying on. Today was Nathan’s birthday (yesterday I guess seeing as this is so late) and I think it was an enjoyable day for him. I need to get them back into some council ling just to make sure they’re ok. I’ll work on that this week.

As you have all read by now from Austin’s journal it is again scary times for Beth and her family. This disease is just such a monster. He is the last surviving Neuroblastoma child from our hospital. Ashley lasted longer than anyone really expected but Austin was still going strong looking for that trump card. He has and WILL defy all odds. He has to!! We so need to be shown that God is capable of healing our children, please help us pray that Austin will be a chosen one. This week will be busy for them as they undergo tests to determine for certain that it is Neuroblastoma in his head. It will be very tense and if it is confirmed, they will have to start down the path of what next and what next after that. A path we are too familiar with. Beth, we are with you always, and will be praying for that miracle we have all strived for. Keep strong and your new support group will help you through these next hurdles. You’re stuck with us now!! :-)

People have requested a copy of the speech from Ken Bosveld who spoke about Ashley at her service. I will make it simpler for everyone and post it for you tonight as it was presented from him to us and we would love to share these notes:


I am deeply honoured and humbled to be asked by Ken and Tricia
to speak on their behalf, and offer words of hope and gratitude,
to all who have walked with them on Ashley's earthly journey.

And, on behalf of their friends at Calvary Christian Reformed Church of Flamborough, and the extended community, please allow me to speak a few words which I trust reflect the sentiments of many gathered here today.

___________________________________________________________

Dear Friends;

Have you attempted to 'bargain' with God?

Have you tried to engage Him in a Heavenly version of 'Let's Make a Deal?'

Have you said, "Lord, I've lived a long life? Spare her; take me instead."

Is your heart so badly torn by the injustice of a sweet little girl, just
5 years, 7 and a half months old, being taken away by cancer
that you've said to God,
"Look, Lord, what if a thousand of us all AGREED to end our earthly life
3 weeks earlier than You previously planned?
That's 3,000 weeks -- nearly 58 years -- and we'll give that time to Ashley."

Have you had those kind of thoughts?

Ken and Tricia have.

I have.

I suspect some of you have also.

But, of course, our God is not a Cosmic Robin Hood who takes time from some of us, and gives it to others.

He doesn't cut those kind of deals.


Ken and Tricia -- on June 1, 1997 you stood before family, friends,
and the congregation at Calvary Christian Reformed Church,
accompanied by Derek, Danielle, Nathan and Pastor Geleynse.

On that day you made a promise.

You held Ashley-Anne Noel in your arms, and promised to love her, care for her, nurture her and teach her about Jesus.

This week you again held her in your arms, until it was time to give her back to God.

Ken and Tricia -- you have kept your promise.

And God will keep His promise to you; and to Ashley.

___________________________________________________________

During her all-too short life, Ashley moved more hearts and touched more lives than many of us ever will -- whether we are granted 60, 80 or even 100 years.

Knowing Ashley's long-term prognosis was not good, she was enrolled in Kindergarten at Dundas Calvin Christian School a year earlier than usual --
and she came back for Kindergarten again this September.

She made many friends, and her first-year classmates who moved on to Grade 1 missed her deeply -- some were even down-right angry, thinking the school somehow allowed Ashley to flunk Kindergarten.

Karen Nightingale, Ashley's teacher, describes her constant smile as warm and soothing, and how her big brown eyes twinkled with enthusiasm and curiosity.

What an irony of God's amazing grace that a body being consumed by disease could also be so full of life.

Ashley was a quick learner, and very intuitive.

She loved to hear 'The Angel' story -- how happy angels filled the sky when they came to tell the shepherds that Jesus was born.

Perhaps some of those very same angels gave her a first-hand account of that event as they escorted her soul to Glory.

Ashley loved music....

She had rhythm;

she could feel "the BEAT'.

During her teen years she planned on being a ballerina;

after that she would become an artist.

She loved drawing -- painting -- just about any art activity.

And, like a true artist, Ashley could be a NIGHT OWL.



She had a favourite song, and we have sung it today --

Jesus Loves Me....this I know......

for the Bible tells me so....

Little ones to Him belong....

They are weak -- and sometimes their little bodies are taken over by cancer --

But HE is strong.


Yes -- Jesus loves Ashley.

___________________________________________________________

No matter what barriers people might put up, Ashley knew the way to their heart.

Doctors and nurses melted at her smile.

She could walk up to other children and -- point blank say, "do you want to be my friend?" And a few minutes later Ashley and her new friend would be drawing pictures together.

Ashley was a fighter; from a long line of fighters.

But more than just a fighter -- she was a CHAMPION.

She did not want to leave this life.

She did not want to leave Mommy and Daddy -- Derek, Danielle and Nathan --
Papa and Oma and Opa, her aunts, uncles, cousins and friends.

Yet Ashley endured with courage, grace and dignity.

With trust. And with genuine, child-like faith.

___________________________________________________________

When Uncle Rob went fishing for a compliment,
he asked Ashley which men she loved the most.

Ashley replied -- ³God is Number One²

³Daddy is Number Two.²

I won't tell you where Uncle Rob stood on that list -- but suffice to say Ashley was great at teasing, and she had a terrific sense of humour.

___________________________________________________________

We don't know, and perhaps in this life we never will know, what gain can come from this loss -- but we know God works all things for good for those who love Him.

Perhaps somewhere, where Ashley's story has been told or her Caringbridge journal has been read, God is at work saving a soul.

Perhaps it is the parent of another cancer child.

Perhaps it is the child.

Perhaps it is someone who years ago lost their precious child and until now hasn't been able to 'forgive' God.

Perhaps it is someone in this auditorium. Perhaps it is YOU!

Ken and Tricia don't know how God is using these events to bring about good -- but they trust He will somehow do so.

The gratitude they feel toward all who have shared in this journey can NEVER be expressed through words or sentiments.

They are forever indebted to all who have supported them
with words of hope and promise,
deeds of kindness,
cards of encouragement,
or messages posted on Ashley's web page.

They can never re-pay the doctors and nurses who broke through the barriers of 'professional detachment' so they could not just care for Ashley,
but truly LOVE her;
and to the staff and volunteers with various agencies and organizations who played such an important role in filling Ashley's short life with much joy and marvelous experiences.

And they are eternally grateful to a community which rallied behind them
with spontaneous fund-raising efforts, the doning of ribbons of support,
to Redeemer University College for making this auditorium available,
and to those who make it possible for Ashley to undergo treatment last month in Philadelphia.

The entire family has been carried on the wings of prayer.

And, through a five year old girl, God has reminded our community of what is REALLY important in life.

____________________________________________________

Ashley's earthly days may be over, but ours are not.

God calls us to renewed service, love and compassion.

As great as our suffering may be today, we have HOPE.

We have God's promise.

That¹s the comfort Pastor Zantingh and Pastor Jongsma will share with us today.

We need to share that Hope, that Love and that Promise
with those who do not yet know it.

And we need to continue to uphold Ashley's family -- and each other --
in thought and prayer.
____________________________________________________

Children can tell the difference between the 'real thing' and a 'phoney balony' in a fraction of a second.

The Bible tells us that children loved to be around Jesus, because he was so genuine and so loving.

One of my favourite Bible images, and it is expressed in the words of Jesus Loves Me, is of hordes of little children, crowding around the Saviour, as he told them the most wonderful stories about God and the Kingdom of Heaven.

I have no doubt that story time with Jesus involved children being riveted in absolute attention; broken by occasional waves of laughter -- laughter like only a child can laugh.

Today, when I close my eyes, I see the image of our Precious Saviour, sitting under a tall, shade tree, with dozens of children all around him.

In the distance there's a long forgotten heap of discarded crutches, wheel chairs and I.V. poles.

Jesus is telling them the story of how Evil Satan once thought that he could use cancer to try and steal little children away from God.

The children are laughing that Satan could be so incredibly foolish -- but none is laughing harder than the adoringly beautiful girl, with long, flowing curls, cuddled in the arms of her Saviour.

The Lord gazes down with a look that can only be described as eternal, unconditional love -- and while he tells the story, she's giving him a rainbow manicure -- NO CHARGE!


Today and for all eternity, our darling Ashley is SAFE IN THE ARMS OF JESUS.


Only someone who has experienced the death of their child
can even begin to comprehend the soul wrenching heartache it brings.

Our Father in Heaven experienced such loss.

His Only Son, Jesus, was wrongly executed --
the greatest injustice this world has ever seen.

I began by saying that God doesn't play Let's Make A Deal --
but that's not entirely true.

God does have a 'DEAL' for you --
and it's not a deal that only buys you another year, or 10, or 60.

Believe in Jesus Christ --
Believe that He died for the forgiveness of your sins --
and you will receive Eternal Life.

___________________________________________________________

Ashley's pain is over.

Ours remains.

We grieve -- but not like those who do not have hope.

And may our only Comfort -- today and in days to come -- be found in the assurance "That I am not my own, but belong -- body and soul, in life and in death
-- to my faithful Saviour Jesus Christ."

That's the 'child-like' faith that Ashley knew -- and we truly thank God for the gift of His Spirit in her young life.

That's the promise that has sustained Ken and Tricia and their family.

And it is THEIR prayer that you too may experience God's promise,
and God's peace, even in life¹s darkest moments.

May God's peace be with us all -- as it is with our precious Ashley.



These words were spoken with love and compassion and we will always be grateful for that. I won’t even try and add to any of that right now. I’ll leave you with Ken’s words. I’ll post again soon, I promise.

Bye for now.

Thursday, November 28, 2002 at 10:58 PM (CST)

The days seem to go on. How we are managing to carry on is still a mystery to Ken and I. We must again be given strength from Him because I know of no other reason why we would still be functioning. We miss her horribly. At first we could pretend she was at a friends for a few days. It’s been too long for that now and reality is sinking in. Each day there are so many reminders. Shopping is difficult. Today I passed Cheese Whiz in the store and nearly fell apart. Passed the Easy Mac & Cheese, same thing. Nail polish isles nearly kill me. Deep breaths seem to help. Just deeply sad is the only way to describe the feelings right now. I know many loved her and she taught us all valuable lessons but right now I’m feeling selfish. I want her back. I don’t want to have to worry about what I’m going to do with all her cloth’s or toys. She has at least 8 huge bags of stuffed animals that are in storage. I don’t want to get rid of any of them. They all meant something to her and us. I’m feeling blue right now, as you can tell. Sorry to depress you all too, but I’m sure many of you are feeling a loss as well. God sure does work in mysterious ways, and I’m not angry with him, just a little frustrated. Ken said in his article that other parents of children that passed away, prayed just as hard, loved just as much and they too lost their battle. What makes us any different? There isn’t an answer to that question, just a tremendous void that I wish no parent had to experience.

I’ve decided in this entry I’m going to throw caution to the wind and start using everyone’s names. I was normally a little more careful about who’s names I’ve written incase they didn’t want it posted, but some of the things I have to say I want them to be recognized for. (Not that most of you will know who I’m talking about anyway :-)). The night that Ashley passed away, I have to send out huge thank you’s to obviously the nurse’s on shift, but especially Kim, who I love dearly and helped get us through the most difficult time of our lives. Our social worker, who has been just awesome, was they’re waiting for us when we came out. I have no idea what time she showed up, but there she was at 2:00 am waiting. Jane, we love you and thank you so much!!! Kathy and Paul, Ken’s sister and brother in-law were waiting in the wings, with Joyce and Rob, close friends, but family to us, Steve my brother and Jackie my birth Mom. I have no idea what we would have done without you guys that night. A huge and monstrous thank you to you all for being there for us. I know it was difficult, and at many times more than you could bear, but we will be eternally grateful. We had to send others home around 11:00 who I know would have loved to have been with us, but we had no idea how fast it would happen. Thank you to everyone who visited in the last days and held us all up by our armpits. The support was incredible and Jane our social worker says she’s seen nothing like it before. The power of friendship and love were well visible and we are so proud of everyone who supported us. I know many don’t like visiting hospitals and found the whole situation difficult, but through the Grace of God you did it and for that we are thankful.

Well I promised I would tell you all about Ashley’s funeral for all who weren’t able to attend. Preparations for Ashley’s funeral were all fast and furious. We wanted a funeral home that was bright and airy. Jane attempted to find us a funeral home at 3:00 am but to no avail. I desperately didn’t want to leave Ashley there, but I had to let that go and her. We couldn’t find anyone to come at that hour and we unfortunately hadn’t prepared, as that was just too difficult. Well we found it the next morning. It was so perfect. It was large which helped as well. We have to send out huge thank you’s to Janine and Kathy and Paul, but especially Janine for everything she did. There were collages of pictures made up, and also 2 framed collages that had a border that everyone who came to the funeral home signed. It was an awesome idea and she spent many many hours in preparation. The poor thing was on her way to pick up Krispy Kreme donuts for a fundraiser for Ashley when she got the news about Ashley. This was 5:00 am. The trooper that she was, she carried on. Kathy and Paul, which none of us slept on Tuesday night, stayed by our side constantly in the following days. Actually Kathy and I just realized we have seen each other everyday since a week ago Saturday. Not a bad thing Kathy, as you’ve both been such comfort and support to Ken and I and the kids! Our deepest and sincerest thank you’s Kathy and Paul!!

So the funeral home was busy but not too overwhelming. Ashley looked like a porcelain doll that I just wanted to pick up and take home. So peaceful…. She had packed with her all her favorites. Her big brown bear, which I named Bear, and she hated the name but hadn’t come up with her own name :-). Her little pink bear, which had special meaning to Ashley and I as I have my own. It was our bear to kiss each other and hug when we were apart for nights when Ken was on shift. She had her nail polish, of course!! She had markers and a coloring book a few other toys from special friends. We had all been given angel pins from a good friend and it was my first cry about not realizing there should be 5 now not six. I counted them and thought she miscounted when she bought them for us. I realized after the second count why and cried. Well Hunter’s Mom showed up at the funeral home with an angel pin for Ashley. She was meant to bring the 6th one. It was so appropriate and meant a lot to us. I can’t believe I’m writing all this! Wow!

So plans for the funeral itself could not have even remotely been successful without the help of so many. Ken and I had wishes but there wasn’t a hope we could plan it ourselves. The Pastor came up with the idea to have the service in Redeemer College and what a fabulous idea. It held a 1000 people and we were forewarned to expect nearly that many. I believe there was only one small section not filled so that would mean around 800 people or more. We were and are in awe. We know she touched so many lives, but to have so many of them housed in one area, is overwhelming. Redeemer College needs a huge thank you for quickly putting everything to motion. They had to cover things up on the stage as they were doing a circus show that weekend. They also provided manpower for the doors etc. I actually don’t know what they all did, but I know it was a lot and another huge thank you to them and especially Doreen who I’m pretty sure had a large part to do in all the preparations. Thank you Doreen!

Music needed to be picked and I know Ashley loved Praise/Worship music. We had attended Grindstone Church a few times and Ashley loved the music. So with Brittany’s Mom, Karen, we chose her music. We talked of how just the piano would sound accompanying the music, and decided it would have to suffice. I’m still not clear on how it all came about, but Grindstone’s praise team offered to perform the service. It was my biggest dream, as they are fantastic, but I would have never voiced it, as we are not members of their church. They’re church has always been supportive of Ashley and our struggles, but I felt that would be an overstep. Well I cannot even put into words how incredibly blessed we were to have them. They’re generosity caused a vision to become a reality. A celebration of life. With their talent and gifts of music they brought life and joyful singing to Ashley’s service. It was incredible and the songs couldn’t have been more appropriate. Jesus loves me was sung, as that was Ashley’s favorite. Thank you Karen for all the coordinating you had to do and running around and again thank you so much to Grindstone’s Praise Team.

I have just now realized how long of a post this is going to be. Sorry!! Susanne Wood who is the choir leader in our school, who also sung at my mother’s funeral, again honored us with her beautiful voice. She sang a solo for Ashley, which was absolutely beautiful, and she also brought along her own pianist. Wow! Thank you so much Susanne for again sharing in your gift of voice and talent. Now to Ken Bosveld. He is an elder in our church who we were honored to have spoken on our behalf about our precious little girl. It was incredible! I can’t even begin to describe everything he said other than everything was so heartfelt and true. I may in the next little while post what he wrote just so family and friends from afar can actually read what words were spoken. Thank you Ken for being there for us and doing one of the most difficult jobs that I could imagine. You made us proud and humbled at the same time to have raised such a beautiful and courageous little girl, so Thank You! Little Mikayla, our violinist. What an appropriate and loving gift from a little six year old. Her parents asked us if she could play ‘Over the Rainbow’ for Ashley. I had posted that I couldn’t bring Ashley the rainbow but we could bring her the balloons. Mikayla and her parents provided Ashley the rainbow. Thank You so much Mikayla for giving Ashley such a beautiful gift. You were incredible and we are so proud of you!

So as you can see there were so many involved in bringing together Ashley’s ‘celebration of life’. Jamie in our church did her program and again what would we have done without you?? It had to be quickly done and it all again came together. Thank you Jamie!! Are you all getting the same feeling as I am? This was all meant to come together as beautifully as it did. So thank you God for helping us provide for Ashley a memorable service that I’m sure made everyone proud. We couldn’t have done it without the help of so many and we were held up by His grace through support and love. If I have left anyone out please forgive me, as it was a very foggy time.

Ashley’s interment was beautiful and Susanne sang Amazing Grace and we all released Ashley’s balloons after. It was an awesome sight to see and I’m sure you could have heard a pin drop. There were so many!! It was something that will always be remembered and thank you to everyone that came and helped us to set Ashley ‘free’. Paul had his own idea in memory of Ashley. He ordered 100 roses for Ashley, which were given out to family and friends. They were placed on Ashley’s casket with love from all. Thank you Paul for such a beautiful tribute for Ashley. Ken and I and the kids placed our red roses last, with love forever…..

So I’ll end this now by saying I could write forever. It was all so incredibly beautiful, and for that we are so grateful, but it doesn’t yet change the fact that we are empty without her. In years to come it will mean so much more to us I hope, but thank you from the bottom of our hearts to everyone, and I mean everyone who even in such small ways supported us. Food, cards, flowers, and love.

I have much more to tell you about this week and the back to life things that must go on. I will post soon, as we need more prayers for Austin. I will update soon or if you are inpatient go to his website at the bottom.

Bye for now and Love to all,

Sunday, November 24, 2002 at 04:58 PM (CST)

We are completely overwhelmed by the last few days. I hope the numbness that we’re still feeling is normal. I still don’t feel like this is happening and has happened to us. I’m even amazed that I am sitting here writing this entry. I guess in my own way I’m purging. This journal I know has meant so much to everyone, but not as much as one day it will mean to Ken, myself and our children in years to come. I’m going to take a few minutes and tell you a little of how the last few days have been. I’m even going to take you back to our last day with our precious little girl.

Tuesday seemed to be going as normal as we can call it. Ashley was doing more sleeping, which we were told was going to be a sign of the end coming soon. Ashley was always continuing to surprise us, so even with all the sleeping we were still expecting a burst of energy from her. I guess I should take you back one more night and day. Ken and I had set up the video camera earlier in the day on Monday to capture the good moments with Ashley. The poor nurse’s thought we had it going the whole time, but we quickly told them it was only turned on for special moments. Earlier that day we managed to capture Ashley playing with her child life worker and Brittany was pulled out of school so she could come and play with Ashley. On Monday night we thought that the time was near. Family and friends were with us until almost 1:00 am when we finally sent them home. We really didn’t know when and the doctors and nurses could obviously give us no real indication. We all wished they had a crystal ball but it doesn’t work like that. Well 5 minutes after they all left, Ashley sat up in bed, rubbed her eyes as we would after a great sleep and asked if she could play now. With tears in our eyes we obviously said yes and what did she want to do. After walking to the bathroom herself, which always amazed the nurses, she climbed back into bed and asked for her lipstick. After expertly applying her lipstick she asked if we could paint her nails. She looked at the pajama’s she was wearing and decided on pink, blue and white, to match. Her hands weren’t quite up to the job, so she told me what she needed and I went away at giving her a manicure. She made me file her nails and rub cream in too. She wanted the whole job.

She then proceeded to talk non-stop and then gave Ken and I a hand signal that Ken had taught her. Sitting across from her I asked what that sign meant and she replied with a huge smile, Peace. She then took that hand sign and faced it to the roof and said ‘Peace Grandma’. With tears rolling down our faces we experienced such joy in Ashley in that exact moment. How proud we were of her. We had been playing non-stop a tape that was given by another cancer mom. Michael W. Smith’s Worship tape. She loved all the songs and she said ‘Mom I think this is a beautiful song. It would have been great for Grandma. I don’t know the words, we have to listen to see if it would have been good for her.’ So she asked us to be quiet so she could listen. Her energy lapsed after the last nail was done and she said I have to go to sleep now Mom, can we do my feet tomorrow?

If anyone was with us in our last few days together bear with me if I get my days confused. I’m really not sure what day was what anymore and who came when. I remember a morning, and I think it was Monday morning, that all the women who were visiting ended up in a coloring contest. Ashley didn’t want to see them doing nothing while they visited, so she put them to work. She was to be the judge. She ended up being too tired to judge, but she thoroughly enjoyed that time. So back to Tuesday night, as I really don’t remember the day too well. I had asked our Nanny to bring the kids in after school on Wednesday to visit Ashley. My birth Mom was leaving the hospital on the Tuesday night to take over the night shift with them, and she called back to say the kids wanted to come in and see her then, not Wednesday. I told her to go ahead and bring them in. It was already 8:00 and they really should have been getting ready to go to bed. Obviously this visit was meant to be. They came and sat with us for a few minutes. Ashley slept through it but we are so grateful now that we said yes.

While they were still there, but not in the room, Ashley’s oxygen level started to drop. She was already on oxygen but it was dropping fast and all sorts of action started. Doctors were called in and all sorts of different oxygen masks were being tried to stabilize it. The kids wanted to stay but we sent them home. I won’t tell you anything that happened after that other than it was the longest 5 – 6 hours of our lives. We had our closest family and friends with us to help us through this difficult time and for them sitting in the waiting room, the longest of their lives as well. I will tell you that true to Ashley’s nature she fought to the very end. About an hour or two before her passing, her oxygen was down in the 30’s and she sat up, whipped off her oxygen mask and proceeded to start getting out of bed. She wanted to go the bathroom. The nurse’s and Ken and I scrambled to get her there quickly as she was going with our without us. The poor nurse was trying to get her hooked up to a portable oxygen mask and me trying to catch up with the IV pole and Ken carrying her to the bathroom. It was quite a panic and we all had to take a few deep breaths. The nurse and I just stood there after. I said I don’t think I can believe what just happened and she readily agreed. Typical Ashley. :-)

I was going to write about the funeral today. That actually was my intent when I started this entry. I will hold off on that now for a few days. I can’t believe I was actually able to write what I did. I will tell you that Ken and I are only functioning right now due to the support of so many family and friends. We have been so incredibly blessed with help from so many people. Ashley’s Funeral Home and Funeral were befitting of such a beautiful and loving child and it all came together with the help and efforts of so many.

So check back in a few days and for all who weren’t able to attend the funeral I will try and describe how we ‘celebrated’ Ashley’s life. I am also going to try and put some new picture’s up.

So bye for now and again from the bottom of our hearts, THANK YOU to everyone who has held us up and supported us in the most difficult days of our lives.

Wednesday, November 20, 2002 at 09:41 PM (CST)

Thank you so much everyone for the abundance of caring messages put in Ashley’s guest book. Ken and I weep every time we read them, but tears of happiness that Ashley has touched so many lives. We feel like the most devastated parents around, but also the most proud. Our daughter has taught us all so many lessons of life and for that she will be forever remembered by all. We still continue to feel numb. This can’t possibly be happening to us. There are no words to explain the loss we feel, we can only relate now to parents who have already experienced this tragedy. I am now shamed that I did not feel even more compassion at the loss other parents have suffered. Knowing first hand what they experienced, I can honestly say, you don’t know unless you have been there. We think we can imagine, but believe me, you cannot.

I’m feeling really sad tonight so I’m just going to post the funeral arrangements that we managed to make today. Thank you all again and we will look forward to meeting many who have also touched our lives through their prayers and support.

Funeral Home: Thursday Nov. 21st/02 7 – 9
Friday Nov. 22nd/02 2 – 4 and 7 – 9

Location: Kitching-Steepe Funeral Home
146 Mill St. North
Waterdown, Ontario

Phone #: (905) 689-4852


Funeral Service: Saturday Nov. 23/02
11:00 A.M.
Redeemer College
777 Garner Road,
Ancaster.

Interment: Mount Zion Cemetery
2nd Concession and Hwy #52
Copetown (?)

If anyone is coming to the Interment I would like to ask you to bring something for Ashley. Her favorite colors were pink and purple and she loved balloons and rainbows. I can’t bring her the rainbow, but I can certainly try and bring her the balloons. So if everyone can join us in bringing helium filled pink and purple balloons to the cemetery, we would like to set the balloons free, as we have had to do with Ashley.

Join us afterwards to help celebrate Ashley’s Life in Calvary Christian Reformed Church. Just down the road from the Cemetery on 2nd Concession.

We have put in the newspaper that if anyone wishes’s to express sympathy through monetary donations, please help Ashley say her thank you’s to Help A Child Smile and Camp Trillium for making the last 3-½ years of this battle memorable. They have brought many a smile to our daughters face and for that we will be forever thankful.

When I can handle reading what I wrote, I am looking forward to sharing Ashley’s last days in the hospital. I started writing down all her cute moments and there were so many I needed help from family and friends to keep it up. One day I may post some of the sad times, but I will concentrate on the happy as that is one of the lessons our daughter has taught us. One of last conversations Ashley had with her sister, after giving her a hug goodbye, was “Danielle, don’t whine, be happy”.

I’ll leave you all with that and hope to see you all soon.

Wednesday, November 20, 2002 at 07:40 AM (CST)

There is no easy or gentle way to tell you the news we have. Ashley passed away this morning, 2:00 am. I don’t even have the words or fingers to type. I will give you all details of the funeral arrangements when we have them made. We are going to try for Funeral Home Thursday and Friday and funeral Saturday. We will see.

Thank you all so much for all your prayers and support. We are heartbroken and numb so please be patient before I am able to post everything that I look forward to posting. Our wonderful moments with our daughter in the last few days and we were blessed with many.

With great sadness, The Goud Family

Saturday, November 16, 2002 at 10:28 PM (CST)

This entry will bring tears and for that I am sorry. It is with a heavy heavy heart that I must tell you all that Ashley will be joining my mother in heaven soon. Ashley has progressively got worse in the last three days and from the results of her CT scan on Friday we know why. She unfortunately is still full of disease, if not more than a few weeks ago. This disease is finally winning. We are unable to do anything to stop it now, as she has no other options available. She could not withstand a strong chemo and her body is still recovering from the MIBG. We have run out of time….

The doctor took Ken and I aside today to have the ‘talk’ that all us cancer parent’s dread. We had to make the decision what, if anything, we were to do. He told us they had nothing that would cure her obviously, and nothing that would prolong her life even. He could only offer us help to manage her pain. She has been suffering so much today. Her morphine by 3:00 this afternoon was doubled from last night and it still wasn’t controlling the pain. Her breathing is worse and they told us it is only a matter of days until her airway will close off due to disease.

The only reason I am able to sit and write this now is because I know through the grace of God we have been given more valuable quality time with Ashley. They gave her some blood this afternoon to help with energy and oxygen and they also gave her a different medication hoping with the morphine it would help bring some comfort. Well it brought our little girl back to us. She has been since 5:00 sitting up, eating and drinking, and beyond all that, playing. She asked for her camp trillium friend to come in, which she did, and also her best buddy Brittany. We all had to leave the room so they could surprise us with their crafts. Early this afternoon we thought she wouldn’t make it through the night. Now, we pray, we will have a few more days. I have come home to quickly grab some cloths so Ken and I can both stay the night and the hospital is being so fabulous. They have given us a whole other room so family and friends can come and visit and we don’t overwhelm Ashley. We can take it in turns visiting. We had so much support today, many tears, and then smiles, as once again our precious bundle amazed everyone.

So I sign this off now, asking for new prayers. We now know her time has come to be with Jesus and my Mum and Dad, but help us to spare her any pain and make it as peaceful as it can be.

Sincerely and with thanks and love,

The Goud Family

Thursday, November 14, 2002 at 11:55 PM (CST)

My journal tonight is not going to be a happy one. I still can’t tell you exactly what is going on with Ashley other than from all indications, her disease is progressing again.

She has been very unwell since I last wrote. She was put on a morphine drip for her stomach pain yesterday. She was bubbly when I went in but within the hour was curled up on her bed waiting for her medicine to kick in for her pain. She had her cough start coming back yesterday afternoon and if any of you remember last time we admitted her and found out she had progressed, she also had a cough. She slept a good part of yesterday and was thankfully up and feeling reasonably well when a gal from Camp Trillium came in to play with her. She has been assigned a special Camp Trillium playmate seeing as she has to spend so much time in the hospital and even if she was out, can’t attend school due to the chicken pox. So they had a great time together and they are both looking forward to getting together again.

We had another sad day on the ward again yesterday. A little boy, walking but still in diapers, lost his battle to a brain tumor. It is beyond words what we experience watching other parents going through this. Ashley’s clinic nurse put it in perspective for me today. I have been sad obviously, but also thinking of the heartache that the nurses, doctors and social workers go through with so many little lives lost in so short a time. She obviously agreed that it is extremely difficult, but for us as parents, it puts our greatest fear to the forefront. Help us pray for Tyler’s family as he joins so many innocent children in heaven.

With that, today was a bad day for me. Ashley was unwell from the moment she woke up. She seems to be in fairly constant pain from her stomach and the cough has turned wheezy and she started spitting up blood again. This is petrifying. I always try to remain strong and confident and hopeful but today was just too much. I call it my ‘melt downs’. The same doctor that experienced my last melt down made the mistake of asking me how I was as I was on the way to the bathroom to have a good cry away from Ashley. I’m scared, we both are, but as parent to feel so lost and out of control as to what’s happening before your eyes is earth shattering. It’s not the flu; both Ken and I know that and the doctors do too. She is scheduled for a CT Scan tomorrow, but the problem is, is that we know she responded to the treatment in Philadelphia. So the scan that they see tomorrow will not show us anything that we don’t really already know. The disease will have probably shrunk and then if it’s started to grow again, they won’t know what the difference was in the mid term. Does that make any sense? Let’s try it this way, the last scan she had here was when she was full of disease. When they rescan her tomorrow, if she had completely progressed again, they won’t see what the MIBG did in Philadelphia because she hasn’t been scanned since.

So with that, I have no idea what they are going to do with the information they may get from this scan tomorrow. They have already contacted Philadelphia to find out what may be the options, but they need to know the CT results as well to make any decisions. They also can’t give her another MIBG treatment until she has recovered from this one. Her counts have finally dropped as expected, but she can’t receive any further treatment until they have recovered. Do we have time? We don’t have the answer to that question. I watched our little girl basically sleep today and if not sleeping, she was in pain waiting for her next medication. If not sleeping she was hanging over her bucket. This is something that only another parent who has experienced it can relate to. It’s as I’ve said before, beyond words. Helpless isn’t even the right word. The doctors are helpless other than to try and keep her medicated for the pain. We are running out of options. I was on the computer with my sister in-law tonight hunting up possible options, but we are moving into Phase I’s now and we know Ashley would really be a guinea pig for dose’s ect. And our hospital does not participate in Phase I’s. So we’d have to take her out of country and in the shape she is in right now, I don’t know how much treatment her little body would sustain.

So have I depressed all of you? I know I am, and as I have told you all before, unfortunately I have to write it as it is. I would love to spare you all the heartache but I know you all care and love our little girl and you should all know that things are extremely scarey right now.

Thank you so much for everyone doing fundraising for Ashley. Two High Schools, Highland and HDCH are making us so proud and humbled. It’s been incredible the support from the community. The guest book entries encourage us, so thank you for all of those.

I’ll leave you all with that and I’ll try and post tomorrow or the next day what happened with the CT scan and what may be the next plan of action.

Thanks again for the love and support. Ken and I check daily for the uplifting remarks and we truly do appreciate all the prayers sent Ashley’s way.

Bye for now.

Tuesday, November 12, 2002 at 09:03 PM (CST)

Well we’re still in the hospital. I really don’t have any news to tell you. We’re pretty sure it’s not the flu that she has. She has had no more low-grade fevers and her stomach pains have started back up again. She is starting to ask for her Tylenol, which for Ashley means it hurts more than she lets on. She is still not eating and drinking. It’s a shame after she was eating so well last week. She’s nibbling again. The nutrionist wasn’t in today so they will discuss putting her on the IV nutrients tomorrow. She had lost a fair amount of weight when we re-admitted her on Sunday. A lot of that could have been fluids, we’ll see tomorrow when I’ll ask them to re-weigh her.

So end result after talking to the doctor is obviously we’re concerned whatever good had been happening after the MIBG treatment has stopped. We really won’t have anything to compare to because she hasn’t had any scans since we’ve returned. They are going to rescan her this week just to see if they have any explanations for what’s going on with her again. I had thought most of her weepiness had gone as during the day she has been fairly back to normal. She hung her Nail Salon sign back up and has had a few more clients. I even heard from one of her night nurses that she asked her what colour dress she was wearing the next night. The nurse had told her she was having a dinner party and needed her nails done, so Ashley recommended a colour that would co-ordinate with her dress. :-) Ken told me tonight that last night she had a rough night. She hasn’t slept well the last two nights and even manages to get through the day without a nap. She rarely can’t sleep in the night, so this too is new. She’s always been late to go to bed, but once sleeping she has a good nights sleep. Ken told me at least 3 times last night she was so sad and cried and cried over my mother’s death. She misses her, as do all of us, but as I have mentioned before they had a special bond.

So I don’t know what to really tell you all. We’re obviously still extremely worried, if not more than when we took her in. It’s pretty bad when you wish your child was sick with something else, but the alternative is too horrible to bear. She’s really only in the hospital to get fluids as I could quite easily be administering pain med’s here at home. We’ll see what happens with the nutrients tomorrow or hopefully she’ll start eating on her own again. They are going to up her ‘hungry’ medicine to see if that works. We had weaned her off thinking it was causing the weepiness, but we’re going to up it again as food is more important right now than the tears.

I have to mention a gift that Ashley received from her Kindergarten class. They decorated a pillowcase with all the kids handprints and names on it. It’s adorable and she loves it. It’s on her bed with her and she is proudly showing it off to people. She even tells people her ‘boyfriends’ hand is on there as well. :-) She asked Ken and I the other night, and how we didn’t burst out laughing I still don’t know. She wanted to know what we would be to her once she and Kurtis had kids. She wanted to know if we would then become her Grandma and Grandpa. Trying to explain to a 5 year old that when she had children we would always be her mother and father, without laughing at the fact that she is already planning children with this little boy, was just too cute.

So I hope I leave you with a smile as even through our difficult days she brings so many to us.

Take care and I hope to post soon that all is well.

Bye for now.

PS I'm not sure if you have all been having trouble getting into caringbridge's web pages, but I have, and discovered if you drop the www. and just put in caringbridge.org/page/ashleygoud it works alot better. Either that or resort back to the www.caringbridge.com/page/ashleygoud. I'm not sure what caringbridge is up to as they just recently changed us to the .org, so if it gets difficult and says the page cannot be found, just try a few different addresses. Good Luck.

Sunday, November 10, 2002 at 02:09 PM (CST)

True to form everything seems to change so quickly around here. Ashley had a fairly good clinic visit but she did something to me she has NEVER done before. We were in a room having her blood drawn and right out of the blue she started to cry. Silent tears. I asked what was wrong and she answered ‘when are these tubes going to come out, when are the doctors going to stop giving me medicine and when is my hair going to grow back so I can be normal?’ Obviously devastating. The nurse looked at me with huge eyes and I just cried. Giving her a hug I tried to explain as soon as her cancer was gone we could stop all this stuff happening to her. This cry only lasted a few minutes but since then it hasn’t stopped. She went off to Brittany’s after and they had a good play day and she decided to stay for supper as Karen was cooking something better than I was :-).

So when she came home Friday night she looked pale and couldn’t stop crying again. We had plans to make croquettes with friends this weekend and there was no turning back as I already had the meat prepared. So Friday night she came with us so I could finish the preparation. Saturday she managed to go to dance class but sat before wrapped up in a blanket and when she was done she was completely exhausted and cold again. There was no way I could convince her not to go in. She loves her dance and was determined to do it. Ever since then she has been extremely unwell. She has a low-grade temperature and is either hot or cold. She just feels really yucky. She is now constantly asking how she got cancer and why she had to get it. She wants to know when will it go away etc. These are conversations we have been fortunate to never have with Ashley. Don’t get me wrong, we explain what’s happening to her and why but she’s always been so excepting of everything. She was feeling so unwell that she asked me to call the hospital yesterday afternoon. The doctor and I decided we’d try and let it ride and give her Tylenol just to see if she just had an every day run of the mill flu or something. Well now 24 hours later she is still the same if not worse. So she wants to go back in and I know if she’s asking to go in, she’s not well. So we’re heading back in as soon as I finish writing this.

I’m scared, Ken’s scared. This is hopefully just a normal flu bug, but when in the life of cancer you can take nothing for granted. I’ll try and let you know in the next couple of days how she’s doing.

Bye for now.

Thursday, November 07, 2002 at 10:58 PM (CST)

I’m so sorry!!!! I know I haven’t posted in quite a few days and I know you have all been anxiously awaiting more news on Ashley. We have been enjoying our WHOLE days at home!!! I sometimes take for granted that everyone knows everything right away even when I don’t post and I just realized last night that many of you didn’t even know that Ashley had been set free.

So here’s how it’s all went this week to the best of my memory anyway. We went back into the hospital on Monday around 11:00 and we spoke to the nutritionist and she was really pleased with everything that Ashley was eating. She had no worries about that anymore but she still wasn’t drinking quite enough. So she had a little talk with Ashley and had her promise to drink more. (Which she has, bless her!!) Everyone was all systems go. So we had to hang around to find out her blood counts just to see if she needed to go back on the oral potassium and magnesium. It was all being given to her in her IV nutrients (TPN). Bad news was yes she did. Ashley handled that news like a trooper and all she said was ‘oh no, not potassium again!!’ We told her if she didn’t take it we’d be back in again, so she quickly said ok and then asked if she was going to get paid for it again. For all newcomers Ashley has had to take oral potassium and VERY large doses. Ken not realizing she would be taking it so long, felt sorry for her and offered to pay her when she took it. Well….. It’s been a while and Ashley’s breaking the bank :-) The doctors all get quite the laugh out of us having to pay her but if anyone’s ever had to taste this stuff, it’s well worth paying her!! Ken decided to take a full dose one day just to see what his daughter had to withstand and he said it was beyond vile and he felt sick to his stomach for more than an hour after. So it’s worth every penny!

She ended her last hospital stay with a ‘client’ who paid her $5.00 to get her nails done. She was pretty impressed with her tip!!! We had to bring her sign home with the promise to the nurse’s that she would pop in to still do nails. :-) Believe me, with all the nail polish she now owns, she could easily open her own business! Future plans…. Her Nanny had a pedicure done so she’s branching out. Mind you each toe was a different colour due to the wide range of choices :-)

So anyway, we came home and for us as parents its been busy busy. We are now back to our normal grind of sports, work etc. etc. It has been so nice as a whole family to sit and eat dinner together again. We sure have missed that. Another milestone! Ashley could quite easily be back in school but we have quite a few cases of chicken pox running rampant in the school so she will be unable to go for absolute minimum 3 weeks and even then I don’t know if we’ll chance it with everything going on in her life. So the only children who can be around Ashley right now are kids who have already had chicken pox or had the chicken pox vaccine. She has quickly gotten into the understanding of how serious that is. She asked me to call Brittany’s Mom to see if Brittany had already had the chicken pox and if she had could she play with her. The things we have to teach our 5 year old. Brittany has, so they are having a play day tomorrow. Ashley’s ecstatic.

So other than having what we call normal days it’s been fairly uneventful. Not our usual life in what it seems like forever. I’m actually going to take a calendar and put X’s on all the days we’ve been in the hospital since June. I know the calendar will be full. We didn’t have a summer. The kids had no holiday except their short stay in Camp Trillium and even then it was hampered with only one parent being there and Ashley and my Mum being sick. It has been beyond hectic in our lives and I think Ken and I might be coming back to earth but barely. I am just now with my brother trying to settle my Mum’s estate. I have been so wrapped up in Ashley, and so I should, that we have been unable to even start notifying anyone of her death. So hopefully by the end of the week I will have that behind me as well. What will I do with myself??? :-)

Ashley went to clinic on Wednesday morning and she wowed everyone there. They all couldn’t believe how well she’s doing. Her counts are still fantastic. She may need to start her leg needles again soon to bring her white count back up, but other than that, blood transfusion’s still seem a long way off. The disease before we left was eating up her blood and at least once a week had to get red blood. Well her red blood (hemoglobin) has done nothing but go up! We of course are again hopeful this means good things. Her tests are all confirmed and booked for the first week of December. Hopefully Ashley continues on this path and we will be sitting on pins and needles to get those results. She still manages to give us scares. Last night she was so so sad. She was crying for no reason and she couldn’t stop the tears. She ended up with leg pain that she needed a pain med for. Tonight the same thing. Please, please, please let it be nothing, or it’s a battle going on for the good. She has never had disease in her bones so it still scares us silly.

So tomorrow Ashley has clinic again, and after that she’s off to Brittany’s. Now that our life is returning to a little bit normal I will forewarn you I won’t be posting everyday. I know you all waited almost 4 days for this one and I’ll try not to be any longer than that, but it’s nice to just sit and veg. Actually I still haven’t had time to do that, but I PLAN TO!! :-)

I have to say a very special thank you to everyone in our church who has for the past, I don’t even know how many weeks, been providing meals during the week for our family. I know I haven’t got to see many or even taste most, but just knowing my family was being fed and it not being pizza or junk every night took a huge weight off my mind. So THANK YOU to everyone who cooked baked and delivered all the scrumptious meals. Ken and I will never be able to thank everyone enough for the thoughtful things that are almost on a daily basis being done to help us.

We have also been notified by Philadelphia that IF Ashley needs to go back for another MIBG Treatment they have finally had approval to take the study out of a Phase II. What this actually means I’m still not entirely sure, only that they can now bill for the whole treatment not just extra’s. I’m extremely happy for the hospital, as that is every hospital’s goal when they have been providing treatment to children for so long at their own expense. They can finally have insurance companies start picking up the tab. Unfortunately for us that means leaving it in the Ministry of Health’s hands and if we are turned down again the whole bill will be ours. Fun, fun. Life is never dull around here that’s for sure. Oh well, we’re home and best of all we have our precious little bundle with us and it’s worth all the gray hair and everything else that is thrown our way. I’m even happy that through all this our hospital has experienced a treatment out of the country. We’re hoping now the door may be opened for possible Neuroblastoma children in Ashley’s situation. The doctors have now seen upfront how well the treatment works and another child may benefit from this experience. See, good things do come from bad. We all lose sight of that and just today I took a moment to think of everything that has gone on in our lives in the last few months. It’s been sometimes way too overwhelming, not even with just Ashley, but other things going on in our lives. I am still able to look at the good and for that I am grateful.

I will leave you all with that. Have a great night and talk to you soon!

Sunday, November 03, 2002 at 10:00 PM (CST)

The last journal that I wrote took me hours to write and I felt it needed to stay up for a few days, to absorb, as I’m sure it was very overwhelming.

So now I can fill you in on Ashley’s days at home and at the hospital since Wednesday night. When she came in the house on Thursday morning she was all smiles. You could see straight off she was feeling great. Ken was sporting a new manicure that he paid premium price for (she made a concession for the male thing seeing as it was her dad :-)). Ken told me it was only 8:00 am when she woke up and asked for her ‘open’ sign to be put up. As a true company operator she was very distressed that she had no ‘clients’ that early in the morning. :-) She came home to have a play day with her buddy Brittany who she hasn’t spent a whole day with in ages. I was out for most of the day (I’ll explain later where I was) and from what I heard she had a usual Ashley bubbly day. She was giving out lots of smiles, kisses and hugs. Ken’s other sister and Ashley’s nanny took Ashley and Brittany over to see Ashley’s Oma and Opa. Their day shone much brighter after her visit. We are always so absorbed in our emotional highs and lows that we sometimes even with family lose sight of what they too are feeling. Well Opa and Oma have obviously struggled just as immensely watching their granddaughter battle this disease for so long. They were just as terrified watching Ashley deteriorate 2 weeks ago. She smiled less then and those precious hugs they craved so much were sparse depending on the moment. Well on Thursday Ashley ran straight in to her Oma’s arms and gave her a huge hug. She was all smiles and her face full of joy and life. Opa too received his huge bear hug. These are moments that are irreplaceable and to all of us who on a daily basis have no idea what direction Ashley’s life will take, are monumental.

So she had a great visit there and then they moved on to their local store where the family has been known for years and years. They too were thrilled to have our little bundle in their shop. True to our sweetie, when they wanted to give her something, she chose a bag of marshmallows so she could share with her siblings and a bag of Sun Chips. Most kids would go for the candy. Not our babe. That visit done they came home and Ashley wanted to start getting ready for Halloween. Her costume of choice this year was a bride. The one item we were missing was her veil. Well Janine and Melanie to the rescue again, showed up with a homemade veil, which was adorable. Melanie’s Mom had also made her a silk flower wedding bouquet. She looked absolutely sweet. She was camera shy though so we’ll dress her again so I can post a picture soon. She had a great time Trick ‘R’ Treating, saying her usual polite thank you’s. By the time they returned she was exhausted. Without any nutrition during the day she’s quite worn out bright and early. That is a bit strange for our nighthawk but she must need it. She is now growing her hair, eyebrows and eyelash’s back. Her beautiful brown eyes are just bottomless when enhanced with the lashes and eyebrows.

So the reason I was out Thursday morning was I went to Janine’s High School with my sister in-law. This brave young lady (the same one who wrote so eloquently in our guest book not long ago) got up in front of her whole school to ask for prayers for Ashley and to explain a bit of her niece’s battles. Her teacher stood up before her and read one of my journal entries and I thought it would undo me. Hearing it read aloud brought the moment that the journal was written to the forefront and it was very emotional. To the teachers, students and especially Janine, family and friends helping, thank you for all the efforts you are making to help us in Ashley’s future treatments.

Thursday night I stayed with Ashley so I could catch up with the doctors and social workers etc. Every month the doctors rotate so being November we had one of the doctors who hadn’t seen Ashley in a while. We were having a good day again. Ashley woke up and still groggy from sleep, mumbled ‘can you put my open sign up’. She’s so intent on life, it squeezes your heart muscles sometimes just with simple words like that. Well our social worker came in for a visit and wanted her nails redone. She bargained with Ashley by bringing her in 3 new nail polishes. Well while we were sitting there the social workers fiancée walked past and Ashley turned to her and said ‘aren’t you going to run after your booooyfriend?” We just howled. She’s only 5 and she already has her sarcastic boy thing happening. When asked if she had a boyfriend she answered ‘of course’ and when asked how long she said ‘a few years’. We tried to quiz her on why she liked this boy. She finally admitted because he looks good. :-). We told you she’s all girl!!! We then had a visit from one of her little friends from school. We all had lunch together but after a few hours she started getting a little testy. Shortly after that the new doctor came in to see her. Well true to form Ashley had to initiate her. She started up the ‘fart machine’. She got this doctor hook line and sinker. She howled. She then sat beside me and said she just couldn’t believe what she was seeing in Ashley. She just shook her head and said ‘wow’. She looks great and is so full of life. The only reason we were still in the hospital was lack of nutrition. The nutritionist had explained that it was normal and it would return. Not to worry. The fact that we have had so many nurses and even the doctors admit that they were unsure if Ashley would even make it to Philadelphia shows us we have again been given another one of our miracles.

So Saturday morning she was up and out of the hospital bright and early. She had dance class to go to. Seeing as she is out during the day anyway, we decided it was time to take her to dance. She had a blast. She had just as much energy as the other kids if not more. It just tears you up watching her. Like I said a few weeks ago who would have thought we would experience these moments again. Then the next good thing happened. She started eating again!!! Her hungry medicine that they have been giving her has finally kicked in. She was constantly hungry. I called the hospital to let them know hoping we could keep her home that night but they said let’s give it 24 hours. We were just in a rush to be a whole family again. So today she has come home with most of her bags packed, but not all. She is sleeping at home tonight just to see how it goes and we’ll take her back to her room tomorrow morning for blood work and decide if it’s time to discharge her. Yahoo!!

To end this long journal entry again I must tell you another sweet thing that happened today. In the afternoon we had a visit from some of our local neighbours. Most who we have not had the opportunity to meet. Well they came armed with gifts and scrumptious baked goods, a meal and one lady a precious china doll. The note from her said ‘when on holidays I saw this doll and wanted to buy it for someone special but I didn’t know who yet. I realize now that it was meant for you’. That was a very emotional gift and will always be treasured. I was unfortunately catching up on some sleep so I missed the visit and I have to send out a very sincere thank you for the wonderful treats and gifts. It sparked a question from Ashley we haven’t had in a while. She wondered why she was getting so many gifts and attention. I explained she was being prayed for all over the world that she would get better and so many people loved her because she was so brave. Her answer to that was ‘boy Janine and Melanie must really love me!” Typical 5-year-old answer. :-)

So that’s it for now. I hope in the next couple of days I will be able to tell you that we are back at home and just going for clinic visits. I am waiting for all her tests to be booked for the beginning of December. It sounds like a lifetime away. From her actions and zest we must obviously assume her treatment is working somehow. Her oxygen has remained steady since we have returned to Canada so that too gives us hope.

So take care and talk to you soon.

Wednesday, October 30, 2002 at 10:59 PM (CST)

If you haven’t read yesterdays journal entry please do that before reading this one. It’s a happy entry and I would rather you started with a smile on your face before reading this one. Before I start my monster entry I will just let you know Ashley did manage to have her school pictures done today. She was playing very shy and sat great for her class picture but the individual picture was another story. That took a whole lot of convincing and you can tell she’s not quite up to snuff. She wasn’t able to stay as some kids in Grade 1 have had chicken pox and they have siblings in Ashley’s class, so we couldn’t take the chance that one of them could be a carrier right now. Chicken pox is a definite no no for Ashley. She is very excited about Halloween tomorrow night but seems to be lacking some of her usual energy. She actually wanted to go back to the hospital tonight where she immediately crawled into bed and went to sleep. We’re hoping her body is just doing an internal battle right now with the disease and she’s tired from it. I hope her body is winning the battle!

So where to start. We have so many newcomers reading the website that I feel I must almost recap what Ashley’s prognosis was at time of diagnosis and a summary since her relapse. This journal has become very large and I know it would be very difficult for most people to read all the way back. There are also journalists that are now coming to this site for their information and I don’t want anyone misinterpreting anything or misprinting articles if possible.

So here goes. Ashley was diagnosed in July of 1999 at 26 months old with Stage IV Neuroblastoma. There are 4 stages of cancer with the 4th being the worst. She was given at the time about a 10 – 15% chance of survival. We told the doctors at the time to go ahead and just fix her. We didn’t want to know any of the details as to what drugs they were going to use or anything else, just fix her. So away they went and she responded beautifully to everything. She only received half of the treatment they had planned due to such a significant response and she was considered cancer free in Jan. of 2000 and went on to her next step of a Stem Cell Transplant. A simple explanation of that is that this disease is very stubborn and even though children ‘appear’ cancer free, there are possibly left over cells floating around just waiting to do damage. So they give the child a very high dose chemo that in reality is enough to kill them. What saves the children is what we call a ‘stem cell rescue’. These are stem cells that have been harvested from the child’s own blood and after the child has received the chemo that blows the entire immune system to smithereens, they re-inject the stem cells to ‘rescue’ them. Ashley also breezed through this and remained cancer free for almost 16 months.

When she relapsed at the end of July in 2001 she was 4 years old. We were told that her chance of survival had now basically gone down to 0 %. The doctors and researchers have so far been unable to find the magic ‘trump’ card to keep Neuroblastoma away. Their logic is this, if any cells survived the massive chemo that was given during transplant, they could and would survive just about anything. So basically now we are battling a monster that we are constantly told (very nicely) that few children ever beat after relapse. Well there ARE children who beat a relapse. There are few but there are some. We are certainly not going to lie down and let this disease take control of her body and thankfully the doctors are willing to help us. They are very conscious of quality of life as well, which so are we, but we’re still going for the gusto!!

So here’s where it gets really difficult. Ashley always responds well to whatever is thrown at her. Sure she has good days and bad days but she always comes up smiling and without the baldhead nobody would ever know she is a cancer child. The problem this time round is she only responds well for so long. So two of the different types of chemo they have tried on her since relapse have worked and then failed. She has had localized radiation which worked and then in the end failed. This disease is soooo aggressive that you can get rid of it, but you can’t seem to keep it gone. This is where the challenge lays with all the new technology that we are faced with and all the studies that are being performed around the world to beat this monster.

Let me just quickly explain a clinical study. All diseases with treatments in place have had to go through a staging. The Laboratory Stage: This is when on mice it shows promise. Phase I: This has now been moved to humans but they have no idea what dosage to use and the toxicity and side effects etc. There's a very slight chance of response but their main goal is to determine safe maximum dosage. Phase II: They have mastered the dosages and possible side effects but now they need to test on larger quantity of humans to determine long-term success rates etc. Phase III: This is when to the best of the doctor’s knowledge provides the best chance for that a particular person with a particular disease. It has shown them with all their YEARS of data that these are the success rates.

So where I was going with all that is Ashley has already been through the Phase III (standard of care). It didn’t work. So when children relapse we must now turn to Phase II’s directed towards relapse neuroblastoma. When we have exhausted all possible Phase II’s in desperation we move our children into Phase I’s. We are thankfully still in the Phase II stage but we are hanging by a thread. The treatment that Ashley had in Philadelphia is a Phase II study but is considered a last ditch effort after all other methods have been tried. Chemo’s, radiation etc. This treatment is still done with the efforts to rid the child of their disease but they have upfront told us that they do not at this point have the data that it is a CURE. They are obviously wishful of this but their main goal is to buy us time for that ‘trump’ card. So when they have managed with the MIBG Treatment to get the disease either under control or with a lot of prayers, gone, we must then decide what our next step should be with Ashley.

So that takes us to the what if’s and which route we should take Ashley if certain things happen. This is where it’s going to get really confusing. I’m sure you will all need to read this entry a few times. :-) First I will explain a treatment that I was discussing with the doctors shortly after Ashley relapsed. When Ashley relapsed we could no longer just say ‘fix her’. We needed to get informed, learn and then learn more. We heard about an antibody treatment that was being done in New York that sounded very logical. I spoke with the doctors here about it and it’s not that our doctors said no, but it entailed putting Ashley through a second stem cell transplant. It was put on the back burner as our hospital and Toronto hospital would not perform a second stem cell transplant on a Neuroblastoma patient. So let me now explain this ‘3F8 Antibody’. In my simple understanding and if anyone reading this can explain it easier or better please correct me. At the time that I looked into the antibody treatment, it required blowing away the immune system again with a high dose chemo with another stem cell rescue. Then what they do is when the immune system is completely gone they inject these antibody’s in so that the body learns to reject Neuroblastoma cells just as you and I would automatically reject certain virus’s etc. Sounds logical doesn’t it? In my simple mind it made sense to do the transplant again to get rid of those few stubborn cells but this time follow it up with antibodies. They have been doing this antibody treatment for years and for most of us Neuroblastoma parents it’s something that we long to attempt to at least give our children a higher percentage at survival than 0 %. I'm not exactly sure what the success rate is, but in my mind Ashley would have a 50/50 chance. Either it works, or it doesn't. It would basically be a fresh start on the immune system with this antibody helping them to fight the disease. The problem is you need to have no disease or I think (?) very minimal disease and I mean very minimal. Well this MIBG treatment may bring us back to that goal that we have been striving for since last July. There have been children that after 1 or 2 of these MIBG treatments have been declared NED (no evidence of disease). That too is our wish and prayers for Ashley so that we may too take Ashley to the next step.

So this is where Ken and I struggle with and battle with our conscience’s everyday lately. Since June of this year we have been more worried about keeping our daughter alive from day to day. We were having a hard time looking to the future. We were able to have a brief discussion with one doctor about the future when she seemed to be responding to her latest chemo. That was unfortunately short lived and as you have all read just a few weeks ago she is now completely wide spread. Well this MIBG treatment in the states has the capability of putting her in a NED state. With many many prayers that is what we are hoping for. IF that happens we will now be faced with what do we do next? We can’t just leave her untreated to let this monster free again. We need to do something. The doctor in Philadelphia said a few things could be put on the table and one of them was the antibody treatment. I told him that we were told she couldn’t have the second high dose chemo with the stem cell rescue and he informed us they are now doing the antibodies with only the high dose chemo but NOT high enough to need rescuing. Well our hearts lifted at this news. We thought this antibody treatment was unattainable. He informed us that IF Ashley was declared NED and IF we wanted to do the antibody treatment and Canada would not do the high dose chemo to come and see him. I wanted to hug him on the spot. You have to remember these are all what ifs. We would, if we were able to reach the goal we long for, have to trust our doctors here in Canada and Ashley’s new doctors in Philadelphia to put their heads together to come up with the best and safest route for Ashley. The doctors in Philadelphia are the ones that have put this back into the picture for us which we are thankful for.

So I’m feeling exhausted just writing this, are you all as mind boggled as I feel???? So basically what I have in a VERY long about way been trying to tell you is that after this MIBG Treatment, we can’t stop there. We MUST move on to something else to try and save our precious daughter’s life. Well how do you put a dollar figure on this? I have written before that there is no dollar figure. Well the doctors make you pause and think very hard and long over this antibody treatment. They are only being done at this hospital in New York and they would cost approx. $ 200 – 300,000 US dollars. Yes you all read that correctly. It’s bigger than huge. So as you all read our daily entries in this journal and we try and tell you all that all is going well, and hopefully it is, Ken and I are completely spun trying to process the fact that this treatment that we thought would never be attainable to get Ashley into, MAY be a bigger possibility than it has ever been before with the help of the doctor in Philadelphia.

So many people are waiting to see me write or hear of an amount of what costs have been incurred on our recent trip to Philadelphia. I still have no idea on that and am going to try and call the financial person in the next few days. I would love to tell you that the Ministry of Health should and would cover all these treatments that are Phase II, but unfortunately I cannot. As I have written before we have an excellent health care system but through our own personal situation and actually a few other children, we cannot count on them to help us try treatments that have not been brought into Canada yet. An antibody study comparable to the one in NY has actually arrived in Canada but it is in trial used ONLY on new diagnoses. We are deeply saddened that they cannot attempt to try and save our children with it; they will only try to save the new patients diagnosed. A Phase I study is going on in the States to mimic this particular antibody to be used on relapsed children, but unfortunately it can take years before it becomes standard therapy and we may not have years. So we are left to our own mercy to fund these trips to the States ourselves. It is truly sad but I know we can’t change the health care system overnight and our child’s life needs dealing with now, not in a year’s time when maybe changes have gone through the health system.

So that is what Ken and I as parents are minute after minute trying to deal with. I truly do not wish these decisions on anyone. Ashley will be rescanned in about 5 weeks to see how she has responded to the MIBG Treatment. If she has partially responded we are heading back to Philadelphia for a 2nd treatment to hopefully blow the rest away and then we move to the possible antibody decision. If she has totally responded then we will be faced with that decision in 5 weeks time. If she has not responded at all to this treatment then we have to move on to Phase I trials which unfortunately there are so few of that show any promise and we would still have to take our child out of the country as Canada doesn’t seem to have too many Phase I’s running for Neuroblastoma.

I’m exhausted. I’m so sorry I had to write all this and I know it may be very confusing but we have been at this for 3 ½ years now and its so hard to sum up everything we have learned and what our goals for Ashley have and always will be. We have thankfully been held in His hands constantly as we struggle daily with this battle. Without Him we know we would not have the strength the keep on fighting and I know He is what keeps our child the happy and bubbly child that she is. She has always been a blessing and whatever direction this disease takes us we have to trust in Him to help us make the right decisions.

Thanks for reading and if I hear through the grape vine that I have TOTALLY confused you all I will try again to explain but in bits and pieces. Keep an eye out next week for the Flamborough Review Paper. Ken has written a very heartfelt letter to the community that will be printed.

Take care and bye for now.

Tuesday, October 29, 2002 at 11:14 PM (CST)

I’m trying to catch a quick minute to let you know what we’ve been up to. Not a lot in reality. Ashley has until today been in the hospital just waiting for her to start eating. Her counts are all still good. We are now coming out during the day and returning at night for her to get her IV nutrients. They are hoping with spending some time at home it will inspire her to eat more. She has had a few nibbly’s since yesterday so hopefully she’ll start eating soon. The doctors don’t seem to realize that Ashley is as comfortable at the hospital as she is at home. There are a lot of children who sending them home would change they're eating habits, but Ashley eats well at both home and at the hospital when she is feeling well. We’ll give it a try and at least we can have our days at home. They have started her on a medication that will hopefully help to kick-start her appetite. We're hoping it starts to work soon!

I haven’t had a chance in it seems like forever to tell you some of the cute things that Ashley continues to get up to. Through all the turmoil of Philadelphia I forgot to tell you something Ashley and a nurse did. The first night we were there she lost a tooth. Well it had been hanging there before we even left. Ashley was quite concerned what would happen if it came out in the States. We assured her the tooth fairy would still find her. So on the Monday night her tooth came out and she told the nurse that she was worried what kind of money the tooth fairy would leave her. She said ‘but I would like Canadian money not US money’. So the nurse and Ashley wrote a note to the tooth fairy and put it under the pillow with the tooth. Its just tooo cute! The tooth fairy was nice enough to leave her a Canadian Tooney. :-) (She obviously doesn’t understand dollar exchange yet!!)

The last two days in the hospital, true to Ashley’s full of life nature, has started an all girls Nail Salon in her room. Her room is full of lipsticks, nail polish etc. thanks in part to Janine and Melanie who come loaded every time they see her :-). Everyone wanted their nails done so she decided to open up her ‘Salon’. She’s asking $1.00 for one hand and $1.50 for two hands. We had to put a sign up with open and closed and hours of operation now that she’s coming out during the day. She already has appt’s booked for when she’s back in tonight and tomorrow morning. She’s quite the entrepreneur. It’s money up front or no go! She also decided she wanted to have a go at being a hair stylist as well. I had to walk down the hall with tufts of hair that she put up in her attempts at ponytails. The things we do for love…. :-)

She is back to her usual chipper self. Joking around with everyone. Yesterday she pulled a trick on her doctor. One of the nurses bought her what’s called a ‘fart machine’. Well I don’t know if any of you have seen these things but they are a hoot. It is a remote controlled fart machine. So you can hide the base of it behind someone and from quite a distance away press the button to make it sound like somebody tooted :-). So of course she had to do this to her doctor. The nurse and I were sitting there supposed to be carrying on a serious conversation with him and Miss Ashley very poker faced was letting off all these obscene noises. The doctor being very professional was ignoring her thinking she really did have gas. Well the nurse and I finally couldn’t take it anymore and burst out laughing. He thought it was pretty funny she’d tricked him and took the base out into the hall so she could embarrass him in the hallway. So these are just some of the things she’s been up to. It’s so nice to be able to tell you she’s up to her usual pranks and laughter. We get so caught up in the bad parts of everything we’re losing sight of the fun and the good. I promise to try and remember to put these in more often. By the way this same doctor wanted his nails done and Ashley told him no way! He even offered more money than the going price, but she told him ONLY GIRLS!

Ashley did wake up this morning in pain. It was in her groin area and her leg. She was in quite the amount of pain so we gave her her pain medication and she immediately went back to sleep. (We try so hard not to worry when she does these things). When she woke up she was back to herself. Ready to put the 'open' sign up for her Salon. Rebecca was coming in to visit so we were there a better part of the day. They had a great visit and she was so happy to see her. Rebecca’s family had a fundraiser done for them this past weekend and somebody set up a table for Ashley as well. So Rebecca wanted to present Ashley with what they had raised for her. She was thrilled and was ready to add it to her moneybox from her nails and I had to burst her bubble and tell it needed to go into her special account to pay her bills. She seems to like silver money better than dollars right now anyway thank goodness :-). The two did each other’s nails with deep concentration and are already looking forward to their next visit. Austin was in getting his next chemo as well, so Ashley was quite happy to know he was on the ward so they could play. He was supposed to be in the room next to us and was quite ticked off he was put somewhere further away. We’d tried to convince him to let Ashley do his nails but he’s all boy so that was a no go too! For all the newcomers, Ashley has made many friends over the past few years, many that she has unfortunately lost, but these are two very special little people to her. I would go into detail about who they are but this entry would become very lengthy. If you have time you’d need to go back and read up about them. Suffice it to say Rebecca is her chemo buddy and now that Rebecca is done with her chemo she misses her like crazy. Austin has the same disease as Ashley and has been valiantly battling it for almost a year longer than she has. He’s now 7. Austin’s quite shy but Ashley talks enough for the two of them. He just grins his cute little grin and let’s her go about her business.

So I just found out tonight that it’s picture day at school tomorrow. So we are going to attempt to get her to the school on time so that we can get her school picture done and obviously be there for their class picture. The teacher was thrilled when I called her to let her know we were going to try and be there. I’m also going to leave her there to try and have some fun at school. When she’s not in pain, and that’s easily controlled, she’s the energizer bunny again. So before her white count drops and she becomes susceptible to infections we thought we’d try her at school. Should be interesting!

Ken and I are struggling with an entry that would try and summarize for all of you what Ashley’s next steps may or could be. What we can pray for etc. I’m not going to add it to tonight’s post as it’s already late and I’m sure it’s going to be very confusing and lengthy. So check tomorrow night and I will hopefully have had a chance to write what Ashley’s future plans may entail.

I have to post a special thank you to all the people who have been donating to Ashley’s medical fund. We haven’t come up with her special name for it yet, but we will. I could easily at this point single people out but no one donation is less important than the other. I must just say a heartfelt thank you to all those people. I’m sure in the next few weeks and months I will sound like a tape recorder, but there will never be enough thank you’s to everyone.

So I’ll end this entry now so I can work on the next one. :-)

Bye for now.

Sunday, October 27, 2002 at 12:41 AM (CDT)

So we’re home. Ken and I are both feeling physically and emotionally exhausted right now. Ashley is in good condition as I write this. Our flight back was delayed about an hour and ½ and we finally arrived at McMaster around 10:30 pm. Ashley slept through most of the trip and then through the night. She did experience oxygen loss in the plane but she was being monitored and was given extra to get her through it. Since we have arrived back in Canada her oxygen has remained fairly steady. Maybe that’s her way of telling us she’s glad to be home :-) or maybe we can be hopeful that she is already having results from her treatment. We won’t know for a while yet so we must remain patient. (Easier said than done!) She has been put back on IV nutrients and is still not eating or drinking much. She was in much better spirits this afternoon and was back to our bubbly and joking little monkey. She was on a mission to go play in the playroom and get back to her normal life. The doctor’s plan right now is to monitor her oxygen level for the next couple of nights while she sleeps and if she is ok to try and set something up here at home for her TPN (IV nutrients). He wants us home as soon as possible. Doesn’t that sound awesome! A whole family again. It seems like forever. So hopefully within the next few days I will be able to tell you all that we are home and back to what we call normal.

I am just going to recap what we know we can expect from this MIBG Treatment that she had in Philadelphia. I know that I wrote a brief description of the treatment on my July 5th post but there seems to be quite a few people who don’t understand the concept of what her treatment was all about.

Ashley’s disease can be diagnosed and monitored with what’s called an MIBG scan. Not all children are receptive to this method of testing but most are and Ashley thankfully always was. The MIBG is a radioactive isotope that is injected into her system and within 48 hours it searches out any active Neuroblastoma cells. When tested with a certain machine it ‘lights’ them up and the doctors can determine size etc. There are three places that have taken this concept to a treatment stage. Michigan, California and Philadelphia. These hospitals through a Phase I study determined how much of the isotopes when increased in dosage, children could tolerate. Once dosages were determined it moved to a Phase II. They know that they can administer a full dose as long as the child had a back up of stems cells. (Read back to the end of Sept. for an explanation on the stem cells). This is in the event that the child cannot recover their counts (fighting cells/grans etc) on their own. If the child has no backup cells they can still administer the treatment but at a lower dose. I still have not had a chance to tell everyone who has kept up daily on the journal that we did hear back from the states from their testing on Ashley’s stem cells. The ICC testing came back negative meaning by their way of testing her stem cells were ‘clean’! This means that Ashley was able to have the full dose of this treatment. They have taken the regular dose of 1 for testing and increased it by 18 (don’t ask me to explain exactly what that dosage equals). The isotopes themselves were brought in a big steel container and a big syringe was attached to Ashley’s line. It was slowly administered over 1-½ hours. It is painless and the only side effect she had was for about ½ a day her throat felt sore. The thyroid takes up a lot of the isotopes (which is normal) and they give her medication so it won’t cause any repercussions later in life. She is now radioactive and we had to minimize our contact with her for at least 24 – 48 hours while she was at her peak of radio activeness. Pretty scarey that your child is emitting that kind of radiation. It is like having internal radiation but only at the source of the disease. In Ashley’s case it quickly flushed the left over out of the system. As I mentioned Ashley was extremely fortunate that she ‘lit’ up and also flushed the extras out quickly. This led us to a speedy return home. What happens next is we have to wait and see how her disease is responding. We obviously have to give it time to work, which as I mentioned before will take patience. If she has responded, but not all the disease is gone, and she has recovered her counts without the need of her stem cells, she can go back for another treatment. This treatment can be administered as many times as possible before the child needs their stem cells back (stem cell rescue as we call it). Most children average 2 treatments with a few having 3 or 4. So we already discussed when we could come back if she has been responsive and the doctor in Philadelphia assured us he would have room for her if we needed it. He is obviously as hopeful as we that it has rid her of all of her disease. I won’t even go into what decisions we’d have to make if by a miracle this worked and she was disease free. I will explain all the possible options when and if we reach that goal.

So I’m feeling totally confused after writing all that. Are you?? I’ve been in this world of Neuroblastoma long enough now that I take for granted what people may know or have absorbed through all the postings. For all you newcomers I’m really sorry that this is all so confusing. If you’ve had time to go back and read I’m sure it will make a bit more sense but I know it’s a lot of reading.

We also seem to have people very confused about what part the Ministry of Health has played in our trip to the states and what was covered by the hospital in Philadelphia itself. I will explain it, as we understand it. The Ministry of Health decided to pay for the transportation ONLY to and from Philadelphia. They are in no way paying for any of the medical expenses that were incurred in the hospital itself. The hospital in Philadelphia is paying for the MIBG treatment as it is still considered a Phase II study. This only entails the isotopes and the hospital room for the duration of the treatment itself. So all the extra’s that were needed like extra blood work, antibiotics, x-rays, CT scan and other med’s, doctor expenses etc. are all at our personal expense. Under normal circumstances I’m sure those costs wouldn’t have been incurred, but Ashley was in very serious condition when we took her and even worse when we arrived. We knew this going into it and as I explained earlier there is no dollar figure on a chance at saving a child’s life. I just wanted to clarify that as many people are coming up to us saying congrads on the government paying the bill. We are obviously thankful that they have paid for the transportation but they have certainly not paid the whole bill.

On another note, we have returned to find out that Lutz Orchards have run an article in the Hamilton Spectator. They are having a ‘Pumpkins for Ashley’ weekend and we are beyond words at what they are doing for Ashley. Ken and I are so speechless at the support that we are receiving and have no idea right now how to even respond, think, or act. It is all very emotional for us. All we can say right now is thank you to everyone who is sending support our way especially to the Lutz’s for they’re incredible generosity. It means so much to us that even complete strangers are actively praying for our loved one. Our church has been actively looking for ways to support us and for that we too are extremely thankful. We have not even been able to attend in so long as our lives are so caught up in the present and trying to deal with the day-to-day ups and downs. So to sum it all up please forgive us for not having the right words to say as there are no words to tell you all how we feel. Tears and hugs would probably say it all but as I will probably never meet most of you I send them via cyber ( ).

This was another huge one. Somebody once said I should write a book. I don’t think that would be a good idea. I never know when to shut up!!

Take care and thank you all again for everything. If I have confused anyone enough that they need a better explanation please feel free to e-mail us and I will try and get back to you with any answers.

Love to all and bye for now…

Friday, October 25, 2002 at 03:30 PM (CDT)

So, this is the last Hello from Philadelphia. The first thing I have to say is who has been up to what??? We are seeing guestbook entries that say they saw Ashley in the Hamilton Spectator. Can somebody save us a paper so we can see? :-) I’m sure we’ll find out soon enough what’s been going on while we’ve been gone.

So the latest update. Our flight isn’t until 6:30 tonight. We were a bit disappointed that we couldn’t come home sooner, but we’re still way ahead of schedule so we won’t complain. Kathy and Paul left around 12:00 today. There are not enough thank you’s for them driving all the way to be here with us. They are the reason we managed to stay sane. Ken survived complete boredom as well. :-) They helped entertain Ashley and kept us company too. So thank you SO MUCH Kathy and Paul.

Ashley is as raring to go as can be. She’s glad to be coming home even though it’s from one hospital to another. She had her MIBG Scan this morning and all I know right now is the neck lit up where her tumor is. This is obviously a good thing. The doctor didn’t have any report yet before he said goodbye, just said if she lit up in one spot she should light up everywhere else. He calmed our fears that this all happened so fast. He said it is better when it’s so quick. It means the extra radiation didn’t sit inside her kidneys or anywhere else and have anytime to do any damage. I guess if your kidney’s aren’t functioning at full steam, it can take longer. SO WAY TO GO ASHLEY!! We have been reassured that it’s great news that she did it in less than 24 hours. Her neck tumor without a doubt is smaller than it was when we got here. We will be anxiously awaiting results of what it’s doing elsewhere. I’m not sure when the next scans will be booked.

So we need to get Ashley home and topped up with IV nutrients. She has been unhooked from all that since we left on Monday. They didn’t want it running when we were doing the treatment and then when everything happened so fast we all thought we’re coming home soon anyway. So she has been almost 5 days with no nutrition. She’s starting to look a little skinny minny again. She has to come home on oxygen this flight. She is starting to need it a little through the day as well. We’ll have to see what’s up with that when we get back.

So that’s it for now. The doctors and nurses have been absolutely super. This hospital is fantastic. If we have the opportunity to come back for the second treatment, it will be great to come here. Hopefully with us just driving and Ashley in great shape! I don’t regret now that we never made it to Michigan. I heard that when they do the MIBG treatment they only let the parents in the room for 1 hour a day! I’m not sure if that’s gossip or not but if it’s even remotely correct that would have been awful.

Thank you to Julia who came in again to see Ashley off and spoiled her rotten. She managed another hug so she’s doing something right! :-) Thank you Julia for all the help and support you gave us here as well. We’ll look forward to seeing you soon too.

So bye everyone for now. I should get going and make sure we have everything packed.

See you soon!!!!

P.S. Ken just came up to find me and told me the report came up from the MIBG. It sounds like she lit up in most of her disease areas. Yahoo! Now we're really anxious as to how it's going to work.

Thursday, October 24, 2002 at 04:35 PM (CDT)

This is again going to be a fairly quick post. It has been a really good day. Ashley needed to be at a certain number before she could be released. Our magic number was 7. This number normally takes about 2 – 4 days to reach. Well true to form Ashley reached it within 24 hours! We didn’t know if it was a good thing or a bad thing but the Doctor assured us that it doesn’t happen often but it does happen. She will have a MIBG scan tomorrow morning. If she doesn’t light up that means, the isotopes weren’t any good. If she does light up it means her body just absorbed it all very quickly. So tomorrow morning is going to be tense! We are all quite confident that it has worked though. It already looked last night as if her neck tumor was smaller. It had increased in size over the few days before she had the treatment. Kathy, Paul, Ken, and I all think it looks smaller, so we will see.

So, arrangements are already being made to bring us home. We should be flying home early afternoon and checking in straight to McMaster hospital. We have been told she doesn’t need to be completely isolated but young children should avoid being around her for at least 5 days I think. I’ll read up on all that again and let you all know if there are any restrictions. Adults are ok.

So I’ll try and write you all again soon. I can’t thank you all enough for your guestbook entries while we have been here. We have checked them a couple of times a day and it was so awesome to read encouraging messages and thoughts our way.

I have to try and see the financial person before we leave here. With the Ministry of Health only picking up the transportation, we’re a little worried what kind of bill we’ll be getting. Especially with the CT Scan! All for a good cause obviously!!! :-) The lady here at the hospital when I set everything up was really distressed that our government wasn’t picking up the medical side of things. She has strongly urged us to go back and FIGHT them. She was really sweet. We’ll see. Anyway thanks again everyone for all the prayers. We’re coming home!!!!!

If Ashley has responded well to this treatment, she is eligible to come back in 6 weeks or so to do it again. If it has been successful, we can’t wait. It was painless for her, and hopefully she would be in better medical condition when we came again. One day at a time….

Bye for now.

Wednesday, October 23, 2002 at 05:54 PM (CDT)

Hello again everybody. First I will put everyone’s’ mind at ease. Ashley is in better shape than she was yesterday. She has received her isotopes and as I write this is actually sitting up munching on one of her favorites. Cauliflower with cheese.

So now, I’ll explain what we’ve been up to. I am thankful to tell you it has slowed down somewhat compared to the first day or so. I have to tell you something that was so great last night. Ken and I were feeling really scared, and pretty alone. There’s no words to explain what it’s like when your so far away and your child is in that kind of shape before you. We were thinking how much we would have loved some family with us. In walks Kathy and Paul (Ken’s sister and brother in-law)! Can you believe it? They drove 7 hours to come here to Philadelphia to spend a few days with us and their timing couldn’t have been better! So it’s been very nice having extra hands around. They are staying within walking distance of the Hospital so it’s great.

Later last night Ashley started to come around on her own. Her heart rate was still fairly high until early morning. She had a fever part of the night, which would have caused her rate to be higher as well. The fever finally broke sometime early hours as well. Even having the fever, high heart rate and oxygen prongs in her nose Ashley wanted to play when she woke up. We spent a couple of hours playing and then finally around 12:30 am she went to sleep. The doctor who had been monitoring her through the night poked his head in and couldn’t believe his eyes.

So all is getting better. The isotopes came in and were injected successfully! There were no complications and we now are walking around in little booties and gowns etc. I have just been told that the computer room is closing for a bit, so I’ll quickly end this by telling you everything is ok right now and I’ll post again tomorrow and let you know how our night went and tell you a little more about the injection etc.

Bye for now.

Tuesday, October 22, 2002 at 05:42 PM (CDT)

Hello from Philadelphia.

This will be a huge post as I have so much to tell you from just being here for just over 24 hours. I started a daily journal so I’ll just type it as I wrote it as of yesterday and today.

Day 1:

Our day started out fairly typical for our lives. The ambulance people showed up almost an hour late :-). We had our first ride in an ambulance and it was fun but uneventful. The plane was a tiny little thing but again everything went well. Ashley slept through most of the flight. She wanted to be woken up before we landed. When we tried to wake her she couldn’t keep her eyes open. When she did finally wake up she was acting really ‘stoned’ is the only word I can use to describe it. Hangy eyes, happy and sad. Having a hard time remembering what she was trying or going to say. So by the time we were transferred to our land ambulance here in Philadelphia we were already getting a little concerned about her. I asked the Paramedic to check her oxygen level (I thought low oxygen could explain it) but she didn’t have an O2 monitor. Ashley sent that paramedic away with a smile on her face. She was lying on the stretcher with her bright sunglasses on when she heard music. She asked for it to be turned up, then asked again when it still wasn’t loud enough. So with music blaring she was swinging her head to the beat with her bright shades on. It was quite a sight!

The paramedics managed to send us in the wrong direction with her at CHOP (Children’s Hospital of Philadelphia) but we finally got to where we were supposed to be. We were put in a room and when I was gone getting us lunch Ashley finally fell asleep again (we were hoping she would to lose this stoned thing). When I got back Ken had a doctor with him. Ashley had started breathing REALLY weird. We’d never heard her sound like that before. As well as that when she went to sleep she was totally out cold. She was floppy and fairly unresponsive. Ok we’re getting scared now. They checked her lungs and everything sounded good to them but they wanted a chest x-ray done. Her oxygen level was good and they checked her pupils and all seemed fine. By the time we were done with the x-ray Ashley was back to normal and charming everyone’s pants off. They decided that if breathed like that again in the night they would do a CT scan. They can’t take any chances that she could be too unwell for this treatment. So what do you think, are we having a good day so far??

Next we were taken to her isolation room. We were warned the entire place would be in plastic. They weren’t kidding. Handles and everything. Ashley’s bed is surrounded with big metal walls on wheels. Not too high that we can’t see her but high enough. Ashley checked it all out. We explained how it all worked and she said ok and then asked to go play in the playroom. So far she is handling everything awesome! Ashley then hung out with the nurse so we could scoot over to Ronald McDonald House and check in, which by the way is fantastic. This RMH is the very first one built but it’s huge compared to Toronto’s. We quickly got back to the hospital and she finally opened her gift bag from Austin and family. Holy Cow!! It was an endless bag. Beth, did you buy up the whole store?? She now has a big bucket on the end of her bed for tomorrow.

We warned her that she needed to have a catheter put in and she asked all the right questions and was ok with the answers. Ashley also knows that she can’t have hugs and kisses from us for at least 48 hours after the infusion of the isotopes. She’s handling that but does get a bit teary. She is already on a countdown to when those 2 sleeps will be done. She’s so brave it just tears you up. So that was the end of day 1. When I left tonight she was in good spirits and dressed in her new PJ’s that she thought were cool! Not bad for day 1…

Day 2:

So we have discovered that whatever could go wrong has gone wrong. When I got here this morning I found out Ashley did have the breathing noises again so they did a CT Scan at 6:00 am. Other than that she had a great night. She stayed up late as usual. We heard from the nurses that she was asking them very nicely if they could be quiet so not to wake her dad. He was tired. :-) She’s been super sweet and so polite to everyone.

So the doctor came in to give us the results of the CT Scan. She has obviously progressed, as she has been untreated. The tumor by her windpipe is now pressing into her lung and causing it to partially collapse. They told us the airway is still clear from all the tumors so they will go ahead with the treatment. The collapsing lung is also the reason for the unexplained fevers. So we finally know where the fevers are coming from. They have decided to give her antibiotics to clear up the cough that she has, just as a preventative incase she gets sicker with a possible viral infection.

So after all that our day seemed to go for a pot. In reality it went to pot the minute we got here. We’ve needed (over and above what’s covered) x-rays, CT scan, extra bloodwork to check for infections and started antibiotics. So if that wasn’t enough to handle we have now found out that Fed Ex has lost the MIBG Isotope! These isotopes are specially made in Michigan and only have a shelf life of 24 hours. They are still hoping to recover it in time but have already had to order a new batch. So we are now behind schedule and Ashley this afternoon seems to be worsening. Her chest sounds awful and her oxygen is down to low 80’s (supposed to be 95 – 100). They’ve started her on blow by oxygen (just blowing oxygen by laying it near her). That has brought her up to low 90’s. It’s better but obviously still concerning. Her heart rate when sleeping right now is over 140. Much too high!! She should be under a 100 when sleeping. Stress, stress, stress!

The doctors and nurses have been fantastic. I’m hoping either tomorrow or in the next couple of weeks to pick her DR’s brain. He is a key doctor in the battle against NB so I really would love his input as to possible next steps for Ashley. His assistant has assured me now that Ashley has come to him she will be on his mind and will try and think of path’s to take. I met a gal in Chicago at the NB conference in June. She lives here in Philadelphia. She unfortunately lost her little girl a little over 5 months ago to this monster of a disease. She is a pro with this hospital and came today to show me the ropes and Ashley seemed to love her on sight. She even gave her a big hug, which everyone knows of late are sparse depending on mood and drugs.

So other than all of that we’re fairly ok. Ken is already bored out of his mind. I have kept busy writing this journal and hunting down people in the hospital that I was supposed to see etc. So sorry to tell you all that things are not great, but this is so far how it’s going over here. I’m sorry the entry was huge but there seemed to be lots to say. I will try and let you all know tomorrow if everything goes as it’s SUPPOSED to.

Bye for now.

Sunday, October 20, 2002 at 10:49 PM (CDT)

So only one more sleep to go!! It has been a hectic few days. It seemed like every hour brought new things. Friday Ashley started her day not feeling well again. We gave her some gravol to stop the throwing up and she had spiked another unexplained fever. So she had Tylenol for that. Poor thing is a walking pharmacy! Anyway about ½ hour after that she was springing back. At that point Ashley’s Kindergarten teacher and one of my friends came for a visit. Well we had a great few hours. We took her to the playroom and not long after she said to me ‘Mommy, I’m hungry”. Well I would have loved to have seen my face. After some thinking she decided on a cheese whiz sandwich. I delivered it to the playroom with glee! She only had one bite. She had a few spoonfuls of tomato soup later and a few bites of a chicken nugget. The nurses and her nutritionist were all excited as well. The things we manage to get excited about! By the afternoon she wasn’t up to snuff anymore and back to feeling yucky.

We had another sad day on Friday as well. There was another young woman who passed away. I don’t say child because she was now 19. She started battling cancer I think about 4 years ago. Ashley knew her and her family. She had even come to Ashley’s Open House back in April. She was a wonderful person and one of the strongest and bravest we’ve had the honor of knowing. She will be greatly missed and we pray for strength for her family. I had to tell Ashley on Saturday that she had gone to Heaven just like Grandma had. She had overheard me making plans to go and wanted to know whose funeral I was going to. She unfortunately now knows what that word means. She was so sad. She cried and cried. Poor thing. She’s much to young to be experiencing this kind of sadness.

Friday brought good news as well. The Ministry of Health had decided to pay for the transportation to and from Philadelphia. Yahoo! We need to thank our local MPP Ted McMeekin and everyone working with him. They are battling on behalf of Ashley to have the Ministry of Health re-look at her case. The Social Worker and I were a bit frazzled because this meant that all the plans that had been arranged now were down the tube. The government wanted to use their own dispatch team to arrange everything. This was very concerning to both the social worker and myself. It was imperative that we be there on time. This was now Friday afternoon and we were talking the government. Nine to Five, Monday to Friday. We were told the dispatch would call us on Sunday. Eeek! The day before we’re to leave and we won’t know what time etc. I was very panicky and of course Ken was saying to settle down, the government wouldn’t dare screw this up. Easy for him to say :-). Well they didn’t and we heard from them this afternoon. All is booked and we leave the hospital 8 am tomorrow. Ashley thankfully does not need a nurse to go with her. The nurse’s were all fighting over who got to go :-). I had to disappoint them all. Ashley’s VON nurse had claimed that job as soon as we knew we were going. In the end we didn’t need any of them.

Ashley has become a very big girl. The only reason we would have needed a nurse was for her morphine pump. Well Ken taught her how to take pills. Yahoo!! So her morphine pill is only twice a day. It works well and seems to control her pain. So we are now a pharmacy going across the border. We are taking all her pain med’s with us to help cut some of the cost. If she ends up through the treatment not being able to tolerate anything by mouth, at least we tried. Her hemoglobin was dropping as well. It did that last week as well. (I can’t remember if I told you that). All her counts have remained good except her Hbg. She slowly decreases to the point of needing transfusing. This is caused by all the disease in her body. Well she went up after the last one and has slowly decreased again. She wasn’t close to transfusion yet, but I knew in about 3 days she would be. So I asked them to ‘top’ her up. So she’s now raring to go.

All weekend was full of visitors and well wishers for our trip. Thank you to everyone who came by to say goodbye. We’re obviously scared silly right now. This is a huge thing for us. Ashley was very moody today and she has a cough now that has me very concerned. I just can’t wait to get there and hopefully this treatment starts to work right away! I’ll now be on a countdown for how many sleeps until we get home.

I still have to pack so I’d better go. Thanks to Austin’s Mom I now won’t be able to take many cloths. We’re only allowed one small bag each. She was such a sweetheart and went on a shopping spree for Ashley. Everything that goes into Ashley’s room when we’re there has to stay there. It will be too full of radioactive ‘stuff’ to come back out. So Beth, Austin and Erika went and bought Ashley a HUGE bag of things for in Philadelphia. It will be like Christmas for her when she gets there. So thank you Beth. I know what my bag will be full of when I pack. :-)

If I manage to get access to a computer I’ll try and let you all know how it’s going. I know I said that when we went on the cruise too :-). This time I know how worried you will all be, so if I can, I will.

Thank you again for all the prayers. The support from everyone is very so overwhelming. Our Church held a Prayer Service for Ashley tonight. Ken nor I were able to attend but I'm sure it would have been much too emotional for us. Thank you so much to everyone who did manage to go.

Well Bye for now.

Oh ya, I almost forgot to tell you about Rebecca. She went HOME! We are so happy for their family. She is still far from well, but she now gets to go home and learn how to live with her heart only operating on ½ its power. Ashley cried about that too. So because Ashley was sad, Rebecca and her Dad went and bought them identical stuffed animals so they could think of each other. That was so sweet. So I’ll try again…..

Bye :-)

Friday, October 18, 2002 at 01:19 AM (CDT)

So first off I would like to say welcome to all the newcomers who may now be reading Ashley’s journal. For those of you who get the Flamborough Review or any affiliated papers you hopefully will have seen Ashley’s story. This is the first time that Ashley’s web page has been printed publicly and we’re quite happy to share our everyday life as Ashley battles Neuroblastoma. I will forewarn all newcomers that if you plan to catch up on the reading of Ashley’s journal, beware; it reads like a book now. I only started this web page last November and it has been overwhelming how much support we have here and throughout the world. It is humbling that so many people can care and pray for our precious little girl. We are only one story out of so many unfortunate children with this disease, but we thank you for taking the time to read about Ashley’s. We have been through so much in the last 3 years. Not all bad as you will read. We do have good days and we treasure each one. I will also warn you that I write what I feel and think and I tell it like it is. This journal also includes our whole family and others who are dear to us. It may seem that I share too much of our personal lives but this journey affects our whole life and everyone who knows us.

So with that said I should catch you all up to speed. It has been a crazy week. I will first tell you that Ashley has been holding her own. She still has not eaten anything in over 2 weeks, but thankfully the IV nutrients are keeping her weight stable. She is also still on the morphine. About 3 days ago she started to have some good days. She wasn’t sleeping so much and was back to wanting to play and keep busy. We almost had our whole Ashley back. Well yesterday she was back in full swing. She was the happiest I have seen her in almost 2 weeks. I think it helped that her cousin Janine and friend Melanie came with a bag FULL of presents, crafts etc. for her. It was the first time in 2 weeks that she basically told me to go away and take my time coming back! So thank you Janine and Melanie for sparking those huge smiles and spending so much time with her.

So that was yesterday. As it often does our lives change everyday. She woke up this morning back to not so chipper. Back to not as much energy. We had turned down her morphine after such a good day yesterday and today she was back to experiencing stomach pains. It’s a drag but as we have said, we’re on a countdown. The doctors continually tell us how quickly things could change for us with the extent of her disease. Four more sleeps to go (in Ashley’s words :-) )

So here’s what’s happening with Ashley’s trip to Philadelphia. For those of you who have seen the paper you already know, but for those of you who haven’t, this has been our yesterday and today. The Ministry of Health turned down the hospitals application to cover any medical costs for Ashley. The doctor and social worker came to tell me this yesterday morning. I have been holding it together, it seems like forever, but I crashed. I could not stop crying. They thought I was worried about the money side of it as we will now be responsible for any costs incurred that are not covered. That wasn’t it. There is no dollar figure attached to your child’s life. I was devastated that the Government could turn their back on our child when the application specifically asked “what happens if this treatment is not administered?” and the answer was “death”. We and everyone involved were shocked that they said no. I felt at that moment so alone and so totally responsible for our child’s life. It was too much. I had to make a decision there and then if they were to proceed with the plans. I asked the doctor if we were making the right choice taking her out of Canada. I started to doubt everything. He explained our options and I knew there was no decision. We have to take her to Philadelphia. This is our last hope. So with that decision made the doctor and social worker have been incredibly busy finalizing the plans. They have been absolutely amazing and I cannot praise them enough for everything they have done for us.

We asked Ashley’s story to be put in the paper because we wanted to simply ask everyone to help us pray for her. It had nothing to do with the Ministry of Health, or for raising any money, just prayers. That has not changed. We are asking you all to simply help us to pray for Ashley. Are we angry with the Health Dept? No, we are just really sad. We don’t have the time to fight for her rights and other children’s who may one day be in our situation. We have to concentrate on the now and that’s our daughter. We have absolutely no complaints about our health care as she has had the absolute best treatment, best doctors and best nursing. Of course we’ve had our bumps along the way, but in the overall picture we as Canadian’s have it very good and it takes being in our situation to realize how good.

Here’s where it gets absolutely terrifying though. Without the government’s help we now have to worry about the ‘what if’. I had to ask my doctor if there was a possibility we could ‘lose’ Ashley in Philadelphia. We could have lost her in any of the last 14 days so obviously it was a yes. That is a thought we don’t want to think but we are faced with reality. I am picturing us in a possible trauma situation and we don’t have our usual circle of support. That’s scary enough. Then you have to unfortunately think of what the cost of a trauma situation could run us. Again Scary. That is where it would have been nice to have the governments backing. Not to have had to worry about the cost of a ‘what if’ would have helped lighten the emotional load.

This is a huge entry. Sorry everyone! I will quickly end it by saying that plane is booked. We leave Monday morning early. Everything seems to be going smoothly but at a very fast pace as we get closer to the day. I have been told 3 – 4 days maximum there and we will return immediately to McMaster for Ashley to be monitored there.

So goodnight for now and I will try and do another post before I go.

By the way I’m going attempt to put some new pictures up. If not today, soon I promise!!

Sunday, October 13, 2002 at 11:49 PM (CDT)

The countdown continues. We are now at 8 days before we leave for Philadelphia. Ashley has had many bad days associated with pain. She has now learned to ask the nurse’s for her pain medicine. Scarey! Today for the first time in 9 days, she seemed to have a good chunk of her day normal. She obviously was still experiencing pain but handled it well and was up playing in her bed and smiling much more often.

She even managed a trip to Rebecca’s room for a visit. She had lots of smiles and even stayed long enough to watch a movie. It was sweet, but sad to see the two bubbly girls just smile at each other but no energy to play. Rebecca is doing great, through God’s Grace I’m sure. She is back on our ward and that is just fantastic.

I have e-mailed the Doctor in Philadelphia to ask him a few questions regarding Ashley’s treatment and to put a hint that we would love to come sooner if there was any availability. I know their doing everything they can, but you never know. The implications of us going sooner involve the Ministry of Health. Ashley’s MIBG Treatment will be covered by Philadelphia’s hospital because it’s a study. What the hospital will not cover is anything Ashley needs that does not directly relate to the MIBG Treatment. So all the medications that she is receiving now would not be covered. Also transportation to and from the hospital. They are definitely talking Air lifting her. So next week will be the crunch to see if the Ministry of Health will cover all the extra charges. We have been told if we go to the States before the government has made their decision we will be responsible for those costs. Obviously that means nothing to us. She’s going whether they help pay the costs or not. We’ll worry about the ramifications of that later.

Everyday brings us closer to our goal. We are praying fervently that she will remain stable and all will be well when we get there. The doctor that I spoke with yesterday has told us their main concern is her airway. I explained the neck tumor was growing visibly. What I didn’t tell you is that it is joined to the tumor that is by her heart and is also large enough that it is again tucked by her esophagus and bronchia. Which also includes her windpipe. We are to monitor her regularly for her breathing pattern and if it changes in any way. With the disease in her lung and the fluid surrounding it, it doubles the scare. The fluid was explained to me that she has many cancerous lymph nodes throughout her body but the ones causing the pain are by her pancreas. I guess lymph nodes help circulate fluid and because they are not working properly fluid is building up. How confusing is all that?? It’s mind boggling for sure. It’s confusing to us and we’ve been at this a while. To all of you it must be extremely hard to understand and digest. So sorry for the overload of info. I try to explain to the best of my ability my understanding of it, which most times is not all that great.

As I write this Ken just called me to tell me she has a low-grade temperature. I have no idea what that means, and hopefully it’s nothing. Obviously something else to worry about. I’ll hopefully know more about that tomorrow.

I hope everyone had a Happy Thanksgiving. I know ours was not normal, but we can continue to say thanks for the many small blessings that do come our way. You all may say what blessings are those. There are too many to count. Smiles from our daughter when she’s so sick. Hugs and kisses and jokes. Her ability to enjoy life no matter what is being thrown at her. These are just a few. The rest of our family and their strength are also blessings. The support of family and friends and the community, also blessings. So we do have so much to be thankful for.

I’ll keep you posted.

Bye for now.

Thursday, October 10, 2002 at 10:34 PM (CDT)

I don’t even know where to start tonight. It has been a whirlwind few days. First I’ll explain how Ashley is doing and what’s going on in her little body. She is still very unwell. They have had to up her morphine every day to keep up with her pain. She try’s so hard to not want the medicine but I just go and tell the nurse anyway. She doesn’t realize I can’t stand watching her suffer!!! I’m happiest when she’s sleeping because she can’t feel too much then. She is still our brave little soldier. When she’s not sleeping she’s trying to smile. We all know she’s not well when it’s even hard to get those smiles from her. She’s still trying to colour and make shapes with play doe. She upsets easily which I’m sure is the morphine.

The bad news is she is really chocker block full of this nasty disease. Her neck tumor is growing before our eyes; she has disease above her kidneys and somewhere else around there that I can’t even remember. She also has disease on one of the lobes of her right lung and fluid in the sack around her lung. She has fluid in her pelvis and we found out today, fluid around her heart. She’s a complete mess. This fluid I’m told is disease fluid. What that means I have no idea. All I know is it’s not good.

I was completely pumped yesterday. We had good news, as much as we can call any of this good! We weren’t able to get her into Michigan any sooner for the MIBG Treatment so they contacted Philadelphia where it’s also being done. They told us to bring her on Oct. 22nd!!! That date is to go for immediate treatment. They aren’t wasting anytime doing pre-scans or anything, they just want her to go straight in. We were and are ecstatic about that and so thankful to the Doctor there. The problem is we can’t give her anything to try and fight off the cancer before we get there or it will interfere with the treatment. So we have to give this monster a chance to go wild in the next 11 days. We are feeling like Ashley’s life is totally on the line here. By this afternoon I wasn’t feeling so happy anymore. Don’t get me wrong, we are still happy we’re going, but we’re petrified what the next 11 days are going to bring. Watching Ashley’s neck tumor visibly grow in the past 24 hours is scaring the pants off of us. It could in reality grow enough it starts to block off her airway. Who knows what the rest of this disease is going to do in her body.

So that is where we are at right now. We are so beyond scared I don’t even know how to put it into words. One minute I want to just find a room and cry like a baby and scream at the unfairness of it all. It’s easier to go on as if everything’s going to be all right, so thankfully I’ve spared the nurse’s that ordeal.

So plans right now are we will leave for Philadelphia on the 21st of October, she will be injected with the MIBG on the 22nd and hopefully within 3 – 5 days we will back in our hospital being monitored here. She will either be sent by ambulance or depending on how she fairs in the next 11 days possibly even by Air Ambulance. I can’t see the government picking up that cost, so we’ll see what happens.

I can’t thank you all enough for your support and prayers. Your guest book entries are so encouraging for us. Just knowing she is being prayed for all over the world is such a blessing. We thought things had been bad before, but I think we’re really at bad now. Please help us to pray that Ashley gets through these next 11 days and we make it to Philadelphia in time.

I’ll end this on a bit of a brighter note. Rebecca is coming back to our hospital hopefully tomorrow. She sounds as if she’s doing quite well. Up and walking and her heart seems to be regaining it’s own strength. That miracle was within reach and we have to thank Him profusely for that! I told Ashley when she arrived we’d put her in a wheel chair and go and visit her. The poor little things won’t have any energy to play but hopefully just seeing each other will make everything seem ok.

Thanks again and I’ll try and keep up with the entries for you.

Tuesday, October 08, 2002 at 10:36 PM (CDT)

This will be a fairly quick entry to let you know we’re not in Michigan as hoped. Ashley has been very unwell. Michigan and our doctors here decided to postpone everything while she got better. Well she had a CT scan done yesterday morning and they told us the news late yesterday afternoon. It is again not good.

I can’t fill you in on all the details, other than she is progressing again. She now has evidence of disease in her abdomen and I’m not even sure where else. I have a copy of her CT report in front of me and it’s completely mind-boggling. I’m off to search up certain words when I’m done here. Our poor little Ashley. She is now on a constant drip of morphine to control the stomach pains. She still hasn’t eaten so they’ve started her on IV nutrients.

We are obviously devastated. I can’t even put into words what we feel. Ken feels some anger with his devastation and I am just beyond sad. We don’t have a clue where to go from here. The doctors are back to the drawing board but know they need to move quickly. We can’t wait until December or whenever to get her to Michigan, we need to find something now.

I will post when I have exact information. They have been busy doing tests on her. Today she was sedated and they checked her bone marrow. She had a bone scan and Thursday and Friday she’ll have a MIBG scan done to see if she’s still lighting up (from the sounds of it she’ll light up like a Christmas tree).

I’ve told you all before how with each new tumor we are feeling more and more beat up. Well we’re feeling black and blue right now. I’ve spent most of the night on the computer looking for trials to take to the doctors. I know they are going to do everything they can, but I know they wouldn’t have approached us about the MIBG therapy if I hadn’t have put it on the table. So I will continue in our fight and I’ve changed from normal shoes to steel toed work boots!

Please help us to pray for our sweet and brave little girl and to help us find the strength for our daily battles.

Thank you.

Sunday, October 06, 2002 at 10:28 PM (CDT)

Things change so quickly around here, it’s impossible to keep up. Thursday I spent a better part of the afternoon at the hospital. Not with Ashley. Michigan wanted a medical history on Ashley and with so few days left to get it, I thought it best I went in to personally oversee getting it. Good thing I went. Nothing had been started and I ended up down at Health Records sweet-talking a wonderful lady who copied her history for me that afternoon. Thursday night Ashley was in fine spirits and her usual bubbly self. She went to bed late again. She woke up Friday morning clutching her stomach and ready to throw up. She was scheduled to go into clinic that morning anyway, so I managed to pack her up and off we went. She was so lethargic that I had to get a wheel chair to take her for her finger poke. When we got to clinic she wanted to lay down. She had already thrown up a couple of times. The resident checked her and said she seemed fine. The nurses checked her and she didn’t have a temp. So we figured a virus of some sort. They gave her some IV gravol and hydrated her and then we came home.

It didn’t get any better unfortunately. By 8:00 that night I finally called the doctor. She had been sleeping all day and only woke up to throw up. She hadn’t eaten or drank anything. They wanted to admit her. Huge drag, but necessary. So off we went and as I write, we’re still in. She hasn’t eaten or drank since Thursday night. She still has the cramps, which has caused her to have high blood pressure. Her heart rate has been fairly high as well. They finally said they had to give her some morphine for the pain so see if it brought her vital signs down. It has but when she’s ready for more, you know it. She still has cramps and everything goes up again. It’s so frustrating!!! She is sleeping all the time, barely talking or chipper. It’s so not our little Ashley.

So I have no idea what this week brings. We were supposed to leave for Michigan bright and early Tuesday morning. Kathy my sister in-law has thankfully offered to come with us, but now I don’t know if we can go. Tomorrow is a whole new day and hopefully we will see a dramatic turn around with Ashley. She is also due to have a CT scan tomorrow morning. I will be very glad we’re doing that with this unexplained illness happening. When I say we have to take our lives one day at a time, I really wasn’t kidding!!

We have the results back from Ashley’s stem cells. The PCR testing that is done in Toronto has unfortunately come back with positive contamination. I had that call on Friday night. We’re obviously really disappointed but so thankful that a sample was sent off to the States. I’ve been told that it could easily take a month for those results. So we’ll have to wait and see.

Ashley’s little friend Rebecca last I heard was doing much better. She has been taken off of the machine that was keeping her with us and is in stable condition. She’s holding her own which is so awesome!! I wasn’t able to get all the details but I believe her ‘priority’ status for her heart was also changed due to the incredible turn around with her. I’ll try and get more info and let you know. Thank you all for those extra prayers for Rebecca. I truly believe they have not gone unheard.

Thank you to everyone that looked after meals for us while we were in Toronto. I haven’t had a chance to personally thank you all, but I will hope you are all readers of Ashley’s journal. It has been wonderful to not have to worry what the family is eating as junk food seems to be the norm around here. So thank you all again soooo much!!

So if I get a chance I’ll try and let you all know if we’re going to Michigan or not. She’s due for her MIBG injection on Tuesday afternoon, MIBG scan on Wed. and another scan on Thursday. Friday we will meet with the doctor to see if she has ‘lit up’ or not. Just a quick reminder what that means. This MIBG test is radioactive isotopes that are injected and they specifically search out Neuroblastoma cells. If there are any active cells it should (in most NB children, but not all) light up. Ashley has always lit up when her tumors were active. So if they don’t light up it may possibly mean what’s left in her is dead or who knows what it could mean. We’ll cross that bridge when we get to it. If she does light up it will mean she is eligible for this MIBG study where they inject mega dose in to search out and hopefully destroy any active NB cells. To be eligible we also need a back up of stems cells. So if she lights up, everything will hinge on this ICC testing being done in the States. So have I totally confused you all???? It is confusing, but that’s our life!!

So I’ll try and write soon,

Bye for now.

Wednesday, October 02, 2002 at 10:56 PM (CDT)

Well we’re home! I have so much to tell you all, I hope I remember everything. I’m really tired too, so bare with me if I rattle aimlessly.

We had a busy day packing up on Sunday and getting ready to go. We were anxious to get there though, so we could find out how Rebecca was doing. She is in very critical condition. Her parents have now found out what is going on. When our children get their chemo there is always the chance that they could have organ damage from it. Unfortunately for Rebecca that is what has happened. One of the chemo drugs she had can be particularly harmful to the heart. She has such a damaged heart that she now needs a heart transplant. Her heart is down to approx. 5% function and she is on full life support. She is still a fighter and showing the doctors what she’s made of. It’s obviously shocking to the parents that they are now facing another huge battle, one caused by what cured her of the first battle. Ashley also had that same chemo drug on her first diagnosis. When she relapsed, it was discussed and rejected to use, as her tumor was too close to her heart. These are complications that are discussed, but unfortunately as parents we need to deal with the now and worry about complications later. We will continue to pray for a miracle for little Rebecca and strength for her family.

Ashley’s stem cell harvest went quite well. She was taken down to the O.R. to have her new line put in. When she was in recovery she was already showing them her stuff. They would lift up the sheets to check it and still groggy from the anesthetic, she’d say ‘don’t touch it!’ She went from there immediately up to start her harvest. She was watching them with hawk eyes as they used her new line saying ‘careful or slowly’. She was so brave and co-operative. She ended up with a really weird thing happening. Remember I had said they take her blood and then put it back in. Well she had a reaction when they did that. She got flushed and hot all over her face. She swelled up. They gave her benadryl right away and stopped the infusion. Her face settled down about ½ hour after that. Her oxygen dropped a bit, but recovered later in the night. It was a first for the harvest team. Being her own blood, she shouldn’t have reacted to it. So the next two days she didn’t get her blood back and she was fine.

They had collected 1/3rd of what they needed the first day. The second day they had enough for what we needed in the states. So the doctor asked if we wanted to go for the gusto and have another collection today. Obviously I said ‘yes’ and we now have lots of stem cells. Yahoo! That’s hurdle #1 done.

I have explained to you about the testing that is done here (PCR) and how important it is to have ‘clean’ stem cells. I’m pretty sure I also explained that the States tests another way (Immunoscitology-ICC). Well on Saturday I decided to e-mail another doctor I had met in Chicago. He is another stem cell expert. I asked what the differences were in testing and also if we had positive results come back, what we should do. He responded back to me immediately, which I am so grateful for. He told me that we should not be discouraged by a positive result. He suggested that we send a sample to a particular doctor in Los Angeles to have it tested with ICC. He also said that it is extremely rare for a child who has never had Neuroblastoma in their bone marrow to come back positive with the ICC testing. So armed with this new info I presented it to the doctor here in Toronto on Monday. He told me he would contact the doctor in Los Angeles right away. So he came back ½ hour later and said it was all arranged, and a sample would be leaving the next day!!! We are ecstatic! So we should know the results by Monday from the Canadian testing and hopefully we won’t have to wait too long to hear from the States.

They gave her a medication tonight so she wouldn’t remember having the line taken out. She wanted to help, which of course was discouraged. She was sad and crying while it was being done but she was also enjoying the ‘high’ she was getting off the med. She was seeing double and smiling away at everybody. We were told she would probably crash later and have a good sleep. She’s been awake every night until ridiculous hours. 12 on Sunday night, 2 am on Monday night, 12 last night and go figure, but as I type this she’s STILL up. So much for it making her sleepy.

Ashley’s class from school tried to reach her today at the hospital but we were down having more stem cells harvested. So she came home to a message on the answering machine from them. She had a huge smile on her face!

Well that’s it for now. We need to start preparing for Michigan. I’ll try and keep you posted as to what happens in the next few days.

Bye for now.

Saturday, September 28, 2002 at 03:49 PM (CDT)

So life has carried on and returned to what we call normal. Monday had us at clinic and it was for once a fairly quick visit. Her numbers were ok; platelets still low but she didn’t need transfusing. Her potassium was good too. So she managed to go to school for the afternoon which was a treat. I can’t wait for the platelets to go back to normal range. That steamroller has been at her again. She’s a mess! I’m sort of glad for the bald head right now or I’m sure people would call Children’s Aid on us!

Tuesday I even managed to pop into work for a few hours. I ended up out quite late on Tuesday night and when I came home Ashley was barking like a seal. I guess it came on quite suddenly. It sounded like Croup (sp?). So I called the doctor to see if I could give her some cough medicine to help her through the night. Derek didn’t understand why I would need to call the doctor for that. I had to try and explain that she is medically not a normal child. I can’t give her anything except Tylenol without permission. Anyway, she got through the night fine, but I had to take her to clinic in the morning. That was a real bummer, as we were all looking forward to her having a full day at school. Her class was due to go on a field trip in the afternoon. So we managed, barely, to have her seen by the doctor and race her to school. The bus had to wait about 5 minutes for her, but we managed and she had a great time. (When doesn’t she??).

All the plans seem to be in place for Toronto. We actually have lots coming at us at once. I thought we had to be there Monday, but we are actually checking in tomorrow, late afternoon. They are putting her catheter in Monday morning and hoping to start taking the stem cells on the Monday afternoon instead of waiting until Tuesday. So that may see us home a day sooner. Because the catheter is being put in the groin area, she is actually going to be confined to her bed for her whole stay. She might not be impressed with that! I never knew this, but the stem cells that they collect are actually based on body weight. So depending on her weight, depends on how many they can collect. They have assured me they will take as much as possible. I should explain what I mean by clean stem cells. When they strip the stem cells from the blood, they check to see if they are contaminated with Neuroblastoma cells. We need them to be free of contamination, in my words, clean. With clean stem cells it gives us the opportunity at this treatment in Michigan if she is eligible. Without these stem cells she will not even be considered for the study.

So much is happening around here, it’s as usual hard to keep up. I have to ask everyone to pray really hard for two things. The first being success in Ashley’s stem cell harvest and the second for Rebecca, Ashley’s little friend from the hospital. If you all remember she finished treatment in July and is now cancer free. She went in for surgery on her arm and within minutes of being put under, she had complications. She has been in our ICU ever since on full life support. The doctors are completely lost as to what caused it or what to do. She was transferred to Sick Kids Hospital early this morning hoping they would have more answers. This is obviously devastating to a family that was through their tough times. We went to see her yesterday and of course Ashley wanted to know why she couldn’t visit her. Her father when he found out his daughter was being transferred to Sick Kids said ‘what is it with these two kids that they can’t bare to be apart?’ They of course will now be in Sick Kids at the same time. Thank you for helping us pray for a complete recovery for Rebecca.

So if all goes well, we should be home by Thursday. We have a very busy couple of weeks ahead of us. Next Friday will have us in clinic, the following Monday tests here and then on Tuesday we’re heading out to Michigan to have more tests done to see if she is eligible for the MIBG Treatment. We will return home on Friday and directly admit her to our hospital to continue with chemo. We can’t give this disease any chance to go wild again. We will already be behind by a week or so.

If I get a chance I will let you know how we’re doing in Toronto and how little Rebecca is doing. If not I’ll try and post soon.

Bye for now.

Sunday, September 22, 2002 at 08:34 PM (CDT)

Before I even begin to try and tell you what the last week has been like I would like to tell everyone that Ashley’s web page address is changing. Instead of www.caringbridge.com/page/ashleygoud it will now be www.caringbridge.org/page/ashleygoud. I think it will continue for a while and remap you to the right site, but I’m not sure for how much longer. So if you can’t get in one day try the .org instead.

With that said, I hardly even know where to begin. Our family managed to get through this week with many tears but managed laughter as well. It sometimes seems inappropriate to laugh in funeral homes, but we were able to re-share memories with some long lost friends and enjoy laughter at the better memories. My mother would have been pleased as she did enjoy laughing. We were visited by so many that I haven’t seen in what seems like a lifetime. Friends of both my parents, school friends of mine and of course our strongest supporters, family and current friends. Thank you to everyone who came and showed their support, and to all who have showed their support in other ways. The cards are so appreciated and the words comforting.

My mother was not a member of a church, but was a Christian and a firm believer in God. I was a bit sad we couldn’t give her a full church service, but I tried to bring some of it to her by asking Susanne Wood to sing some solos for her. She was absolutely amazing and the songs a tribute in memory of my mother. Thank you so much Susanne!

I feel like, as I’m sure so many do at the loss of a loved one, that life should come to a halt for a time while we grieve. That unfortunately doesn’t happen, and Friday life continued. Ashley was due into clinic. We had gone in on Wednesday morning and her platelets were quite low. She wasn’t neutropenic anymore so she asked to go to school. So giving her stern warnings that she had no platelets and to be very very careful, I sent her off. Why do I bother? She came home black and blue on her legs. She said she was skipping and fell. I asked why she was skipping when she knew she had no platelets, and her answer was “well it’s not like I knew I was going to fall!” So sure enough on Friday she needed transfusing. She only had 4 platelets left out of the normal range of 110. What a turkey!

Ashley managed to go to dance on Saturday morning. She had a great time as usual. It was a bit of a crazy day as Nathan had his soccer finals in the afternoon and we were trying to get the house polished up for the Open House that unfortunately was already scheduled before my Mum’s passing. Nothing new in this house though! This weekend I’ve been tired of all our busyness. So we had to vacate the house this afternoon. Hopefully somebody will buy soon, as keeping this house spik and span is hard with 4 rugrats.

So Ashley’s stem cell harvest has been booked. We will be in Toronto next Monday the 29th. The 30th she’s having a temporary catheter put in near her groin area. Then on Oct. 1st, 2nd and 3rd she’ll have the stem cells taken. They will hook her up to a machine that takes her blood from one side of the line, puts it through a machine that strips the stem cells out of the blood, and then the blood is put back in through the other line. It is painless other than boredom. She has to stay in a chair for I think at least 2 – 3 hours per day. She can’t get up for anything! So the most pain she should experience is having the catheter put in and then taken out after. We need to pray desperately that these new stem cells come back clean. It could open a few doors for us, the first being this MIBG treatment.

So that’s where we’re at now. She needs to go back to clinic tomorrow morning. I’m sure to get more platelets. She looks absolutely black and blue. There is no holding her down. She got at least 2 more bruises today. We also need to have her potassium checked again. When I took her last Wed. she was at 4.5 (minimum needed is 3.5) so it was good. Through all the turmoil of Wed. afternoon and Thursday, we were forgetful in giving it to her, so she dropped to 3.1 by Friday. The nurse asked the doctor if we needed to admit her. Eeek! I quickly promised to be good and make her take it regularly. So we’ll see what tomorrow brings with that as well. Never a dull moment around here.

So thank you again to everyone for all the support and prayers. Since last week it has been especially difficult and at times much too sad. At the same time that my mother was admitted and we were told she didn’t have long, we had two children pass away on the ward. Ashley and I were just a few doors down from both of the children who passed away and one of them was a trauma situation. It was very very sad. My heart bled for the families and also for the doctors and nurses. Two children in less than 24 hours. I don’t ever remember experiencing that on the ward before and it brings mortality to the forefront. My thoughts and experiences from the last week have shown us how precious life is. Please enjoy every minute with your children and loved ones.

Bye for now.

Tuesday, September 17, 2002 at 01:22 AM (CDT)

With much sadness but also with a little relief I must tell you my mother passed away this morning. She was pain free and we know she has gone to a greater place. She is now with my Dad, which also gives me great comfort. I was thankfully with her when the time came, as I was so worried she would be alone. If anyone is interested in the funeral arrangements please just e-mail us and we will let you know.

Our children are of course handling it like children. Sad, hyper and normal. Other than Ashley. She has been devastated. Ashley and my Mum had a very special connection. Not even because of their similar experiences. This dates back to when she was born and the complications that I had after. My Mum and Stan were her surrogate parents while I recovered from my ordeal and Ashley and my Mum have always had that something a little extra special. I wasn’t sure how she would understand what I had to tell her, but she did and like I said was completely devastated.

It will thankfully pass very quickly as we are having the funeral home just on the Wednesday and the funeral on Thursday. We will have everyone here afterwards for lunch which will be nice for the kids to be on their own turf as they try and digest their first family member passing. They seem so young to go through this, but unfortunately we can’t shelter them from life.

We will have to be back at it right after with Ashley. I haven’t returned the phone call yet, but Toronto has called us and wants to schedule her stem cell harvest.

Thank you to everyone for all their support and prayers in the last six months. It is a comfort that even though most did not know my mother, that you cared enough to send that extra prayer her way.

I will let you know what’s happening with Ashley when everything is arranged. We have thankfully, and I’m sure with a little help, been spared a neutropenic fever. She remained well and fever free through the night. My Mum and Ashley must be sending messages to each other to sort out when is a good time for everything. They seem to co-ordinate everything just so. :-)

Thank you again and I’ll try and post soon.

Sunday, September 15, 2002 at 10:27 PM (CDT)

This post will unfortunately be short. I know there are some cute stories to tell you about our last hospital stay but I don’t have the words tonight. I will tell she has been out of the hospital since Friday night and returned this morning for some blood transfusions. She has, as we expected, crashed with her counts. She has been borderline of having a fever today so who knows, by tonight or tomorrow we’ll be back in again. I will at least tell you she made it to her dance class on Saturday and from what I heard had more energy than most of the kids in there. She danced her little heart out for 45 minutes of the 1 hour class and then had to sit out the last 15 minutes as she was tired. She needed blood today so where did all that energy come from??

I haven’t been able to spend a lot of time with Ashley since Thursday. With a very heavy heart I must tell you that my mother is very sick and we are expecting her to pass away any time now. She was admitted Wed. night and already by Thursday she was in very bad shape. She is now in a coma and thankfully pain free. This has been a difficult few days as Ashley was in the hospital as well. I have been at the hospital with my Mum almost 24/7 since Thursday and this is my first night home so bare with me and I will try and catch you all up at a later date.

Bye for now.

Tuesday, September 10, 2002 at 05:43 PM (CDT)

I just posted yesterday that we had come home from the hospital. Well I’m now posting that we’re going back in. I told you one day at a time didn’t I????? Ashley is actually doing quite well right now. If it weren’t for having to take the potassium and magnesium I’m sure we could have weathered this first week. But to no avail. Her potassium is low because she can’t keep it in. It’s certainly not from lack of trying, bless her but she does take it. It just won’t stay in. Because of that she has lost weight. The doctor is fairly concerned with the substantial weight loss in just a few days. I’m sure we’ll take her in tonight and they’ll pump her full of liquid and she’ll gain back what she has lost. The potassium is a little different. Until she can keep it down we’ll have to stay in the hospital. So hopefully just a few days. Those few days of course will be when her numbers are crashing, so hopefully she doesn’t get a fever!!!

The doctor today has informed me that they want to just go ahead without hearing back from Michigan and re-harvest new stem cells for Ashley. I will let you all know what that entails when I have more info. We’ve been through it once before so I do know how it’s done, but I won’t bore you with the details until later. She will need a new catheter put in. It’s actually called a Cook (sp?) Catheter. It’s basically the same as her hickman but bigger and stronger lines to withstand the harvest. So we need to have a meeting with Toronto, from what this doctor said, soon. So it looks as if the next few weeks will not be boring. What is that anyway?? :-)

I’ll let you know how this hospital stay goes. She’s not upset she’s going in, as usual. All she said was “for how many sleeps? I start dance in 4 sleeps and I don’t want to miss that!” She has her priorities you know!

Well time to repack. Talk to you soon.

Monday, September 09, 2002 at 09:47 PM (CDT)

We are home from the hospital. This chemo round seemed to fly by. I think it helped having Austin next door and Beth to chat with. Ashley seemed to weather this chemo rather well. We had one afternoon where she did upchuck twice but we’re not sure if it was from the chemo or the fact that they tripled her oral magnesium. She seemed to perk up and actually was hyper enough in her room that they ended up having to unhook her IV line to untangle the mess she’d made! She was waving in anyone who might be a new playmate. Old or young would do. We had a 5 week old baby beside us, and what a little darling she was. Ashley and I would wait for her to cry so we could hold her.

Ashley is learning fast. She gave all the doctors and nurses a good chuckle on Thursday. The pharmacist came in just to check up on us. She told Ashley who she was and Ashley replied by asking if she could play with her. I explained the pharmacist is the person who makes sure she gets all the right medicine and how much and she burst out with “so you’re the one I need to talk to. Can you put my potassium in my bag?” Well after a good laugh she replied “I sure can do that for you”. So for the whole time she was in there she didn’t have to take her yucky medicine. The doctor came in to chat later in the day and I guess word had spread that she’s getting swift with her med’s. He was pretty impressed.

We have since found out that Toronto cannot test Ashley’s stem cells with this Immunocytology. There is only one place in the states that tests that way and it’s very expensive. So now they are talking of just going ahead and trying to re-harvest new ones. Toronto has said they will do it if they have time. So end of discussion was we would continue with this chemo as in one doctors words “she is responding remarkably well”. One doctor wants us to go to Michigan right away to be tested and the other seems to want to keep us on this chemo for a while yet. So some scenarios have been sent to Michigan again and we’ll wait and see.

She’s due into clinic tomorrow. I’m not sure what will happen, as she is drinking but upchucking when we give her the potassium and magnesium. The last time her potassium got really low we had to re-admit her, so we’ll see what her numbers say tomorrow. She has that chemo look happening right now. I hate it when she looks like that. Sunken eyes and dark circles under them. She looks like she’s lost more weight, so we’ll have to weigh her tomorrow again. It doesn’t seem to stop the energy though. I let her sleep in this morning but after some breakfast she was raring to go to school. She managed to get through the day with no new bruises, which was good. :-)

So that’s it for now and I’ll let you know how this week goes. It all changes so quickly around here. One day at a time…..

Bye for now.

Wednesday, September 04, 2002 at 10:18 PM (CDT)

Just a quick note to tell you Ashley’s first day of school was great! She had a super day and was really glad to see all her friends and her teacher. I don’t know what it is about school but almost every time she goes she comes home with some new bruises. She seems to be a walking klutz when it comes to school. So sure enough, she bashed her face, elbows and knees in the cement yesterday. I’m glad she had enough platelets for it. That’s one of the reasons I knew her platelets were ok. Her head didn’t really bruise up, just a small goose egg and a scraped nose.

So today was clinic day and her counts are great. As I expected her platelets were way over a 100 and she needs that for chemo. So we are being checked in for her third ICE chemo tonight. She is so amazing. She actually did a dance, singing “I’m coming in for chemo”. She was excited because Austin is coming in tonight as well. I asked the nurse if she had ever seen anyone actually dance in happiness about getting chemo. In amazement she said no.

So life gets chaotic again. Ken has a business meeting in Chicago this week so the house will be upside down with different people watching the other three kids while I'm at the hospital, and to top it off we need to show the house at the end of the week. Eeeeek!!!

Tonight was a get together at school to meet the teachers and other parents. Then home to pack and off to the hospital. Busy, busy!! So I’ll let you know hopefully at the end of the week how our hospital stay goes.

Bye for now.

Monday, September 02, 2002 at 06:31 PM (CDT)

I’m sorry it’s taken me so long to let you know how Thursday went. It went great! First thing that happened was Ashley’s nurse gave me a copy of the correspondence between the doctor here and the doctor in Michigan for the MIBG Treatment. It said that the study is closed until October or November as they are trying to have another protocol approved by the FDA. That is fine by us, as we haven’t made the final decision yet. He also suggested that we need to check Ashley’s back up Stem Cells that are being kept in Toronto. When Beth and I were in Chicago I had the opportunity to speak to a doctor from Philadelphia who’s specialty was Stem Cells and Transplants. As I think I have mentioned before, we have been told from Toronto that Ashley’s back up stem cells are contaminated with Neuroblastoma. Well this doctor from Philadelphia expressed concern at how they had been tested. He said he would prefer them tested another way called Immunoscitology. When I mentioned this to the doctors here of course they were skeptical and were satisfied with their testing. The doctor in Michigan has requested her stem cells be retested with this Immunoscitology. So the doctors are now in motion to try and get Toronto to either retest this way or ship off a sample to the states to be tested. If they still come back contaminated there is discussion of re-harvesting her stem cells again. I’m not sure how cooperative Toronto will be with that as her treatment would be done in the states and because the treatment is yet proven effective, their ethics board may not agree to it or the expense that it would incur. It will be interesting if we have to take that path, what their decision would be. So all in all I was happy with that conversation.

Over and above all that Ashley is responding to the chemo. We’re obviously very pleased about that. She has shown great response and the neck tumor and one of her chest tumors are now minimal and I think, I’m still not clear on it, but the one side of her chest is now clear. So it brings up the question of should we be waiting to do this treatment in the States? We’ve been told numerous times that it’s not IF but WHEN the tumors reappear. So if we can get rid of them using this chemo, we are thinking of leaving this on the back burner for the what if and when. Miracles do occur; we will have to keep praying that this chemo is it. They are going to go ahead and get everything lined up with her stem cells and then we will make the decision after that. If we have no back up stem cells, it can’t be done anyway. We’re also worried about pouring too much chemo into her. This chemo is very hard on the organs, so we’re struggling with how much to give her etc. It’s working right now, so we have decided to do one more, hopefully this week and see where we go after that.

So that’s as much as we know right now. Still no decisions, but as I said, we’re happy the doctors are taking an interest and getting the ball rolling. The doctor and I had a good chuckle on Thursday. The potassium she’s been taking is really very gross, as I have mentioned before. Well Ken struck up a deal with her (he was feeling pretty sorry for her) that he would pay her to take her medicine. Well she’s striking it rich! The doctor asked how taking the medicine was going and I told her she was making us poor. She thought it was pretty funny and said she would call me later in the day to see if her blood work showed we could stop the medication. She called and laughed and told me to empty the piggy bank. She still needed the potassium. I’m glad we can find humor even with the doctors about some things

Other than that it’s been very crazy around here. I finally managed to take all the kids shopping for their school stuff. I survived, barely, but best of all they survived. I thought before we left, as they were really getting on each other’s nerves and mine, that I might have to hog-tie them or something! So that’s finally done. The For Sale Sign went on our house this weekend. It’s final, we’re really moving. So we now have to attempt to keep the house neat and tidy and start to get ready to move. How on earth do you keep a house with 4 kids in it neat and tidy? I think I’m going to ship them all out for a month!!!

So this weekend was busy trying to clean up etc. We decided at the last minute to have an end of the summer party. We had lots of our friends and their kids over on Sunday. Our deck was so full of people if there were any more they would have been sitting in the pool! It was great fun and a great way to end the summer.

So tomorrow is finally school again. Ashley is due back in clinic this Wednesday. I opted for that day so she could go to school for the first day. We’re hoping she’s in for chemo later this week, so starting with school will be a nice way to start her week. She’s very excited and can’t wait to see all her friends. She’s finally going to be in Brittany’s class which she of course has been waiting a whole year for. She has new friends that will be in this class as well, so she’s pretty pumped up.

Well that’s it for now. I hope everyone enjoys the first day back to school. I’m not looking forward to the early mornings and making lunches, but I am looking forward to them keeping busy.

Take care and I’ll post soon. :-)

Monday, August 26, 2002 at 10:23 PM (CDT)

So Friday’s clinic went as expected. She needed to be transfused with platelets. I expected her potassium to have dropped considerably as well. We had only managed to get it into her once on the Thursday. It was actually high. Very confusing, but it meant she was told she only had to take it 2 times a day now. She’s pleased. Her heart rate was still a tad high, which I thought was from low potassium. That blew that theory. We still don’t have any explanations for the higher heart rate than normal. It’s not way out, just higher than it should be. We’ll figure that out some day I hope, but for now it doesn’t seem to be affecting her life.

We had a nice weekend. It was fairly relaxed. We finally made it to church on Sunday. Our lives have been so out of sorts that it was an accomplishment for the whole family to finally go. Ashley wanted to go and see Grandma after. They haven’t seen each other for quite a while. I’m sure my mother was doing well until we showed up! The VON nurse came while we were there. Her blood pressure was high, I wonder why? We came with our four kids and two cousins. Six kids are enough to put any sane person’s blood pressure up isn’t it? :-) It was actually a nice visit, and because my mother was feeling well it was even nicer. It’s good for her to see Ashley bouncing around like her normal self as she worries about her constantly.

So today was another clinic day. I expected she would need platelets again as she doesn’t hold her transfusions well. As Ashley was dragging her butt out the door she said ‘Mom, I think I need blood’, which I thought was cute, but wrong. Well, it show’s what I know! I was telling the nurse what she had said and how cute it was. She turned to me and said ‘she actually does need blood’. She has at 5 years old clued into how her body feels and what it needs to fix it. Pretty scary! I guess I’ll have to listen to her when she thinks she needs topping up next time. I had to put her in a wheelchair to take her to clinic. By the time we were done her transfusion she was bouncing around again. It was a long day by the time we were done clinic and then she had her CT Scan later in the afternoon.

That weird thing that happened last time she had her CT only partially came back thank goodness. Her ears started to feel like they were burning, but thankfully that was it and it was short lived. It was after 4 when we got out and she hadn’t eaten anything but a few cheesie’s that we snuck her. She was starved poor thing.

So we’ll head back to clinic on Thursday to get the results of her CT. Hopefully she’ll be back on the road as far as her numbers go.

I have to bring attention to Janine’s beautiful entry in our guest book. It was truly humbling to read such an insightful message. Thank you Janine for seeing through the strength and stubbornness to who our little girl really is. We thank God everyday for the miracle he bestowed us with Ashley. Through all the pain and anguish of having an ill child we can smile knowing that she has affected so many people’s lives. When she’s older she will be proud of herself knowing how many people have seen her strength and love of life and treasured it.

I am trying to put new pictures up. Hopefully it works, so check them out!

Bye for now.

Thursday, August 22, 2002 at 06:17 PM (CDT)

So everything’s been chaotic as usual. Ashley ended up really not feeling well for a few days. The fevers weren’t too high but enough that she slept a lot and was unfortunately throwing up a fair bit as well. She had a couple of transfusions in the first few days and her potassium was still being given to her. She was taking it by mouth until she got sick, but this stuff is so vile there was no way she could take it while she was sick. Monday morning she woke up very late, but was back to our Ashley. What a difference when she’s feeling well. The fevers stayed gone and by Tuesday the doctors decided to send her home. She had to show us she could take her potassium orally first, which thank goodness she took and it stayed in. So we were set free on Tuesday afternoon. I had asked a friend to come by and stay with Ashley so I could go and see my Mum. By the time she got there we were in the midst of being discharged. Our lives seem to change hour to hour. It’s hard to keep up with ourselves sometimes! So instead of Ashley playing with her little friend in the hospital, they got to play here at home instead. She had a great afternoon.

My Mum was thankfully let out of hospital on Monday, so we now have both of them home, which is good. She is doing fairly well. She had a mild case of pneumonia and we had feared progression, but it was just lack of oxygen due to the pneumonia. Thank goodness for that!

So this week has been busy going to clinic. We have to check her potassium every day right now. Yesterday her potassium was quite high, so they told her to do one less dose. Hopefully very soon, she’ll be down to none. I haven’t heard yet today how they were, but she’s borderline needing platelets, so we’ll go and check tomorrow. With it being a weekend I’d rather she be checked and transfused if their too low.

So in-between sports and visiting Mum and hospital and then clinic etc. etc. it’s been crazy busy. So far nothing going on this weekend, so I think we’re finally going to have some of that down time we’ve been looking for. Yahoo!!

Ashley went to her friend Katie’s house yesterday afternoon, and didn’t want to come home. She’s back in full swing! She’s such a trooper. We’ve discussed the next step and decided she needs to have another CT Scan to see if she’s still responding to treatment. Then we need to call the doctor in Michigan to find out what his recommendation is. So hopefully within the next week or so we’ll know what direction our lives are taking.

So that’s it for now. I can’t believe school is right around the corner. I now have to think about stocking the kids up on all their school supplies. I’ll leave that for next week I think. :-)

Well, bye for now.

Saturday, August 17, 2002 at 09:52 PM (CDT)

Amazing! Two posts within 3 days. I promised to let you know about Camp so here it is.

A typical day at Camp Trillium is breakfast at 8:30 and then all the kids go off to age appropriate activities. Their busy doing all different things everyday until around 10:30 and then it’s a free for all which is all different things planned and you join which ever activity you want to. (An example is - paint the van. The kids all put on big T-shirts and proceeded to cover a van with paint. :-)) The parents are invited to join the free for all, but can just do nothing while their children are off doing their thing. Lunch at 12:00 and then the ‘special friends’ have a break until around 2:00 and then the kids get to choose whatever they want to do with their friends for the afternoon until dinner. Different activities are fishing, sailing, paddle boating, canoeing, and craft room etc. etc. After dinner the friends have an hour break again and then we have a game (one night was the ‘Price is Right’ and it was so funny!). Then camp fire where they do skits and sing songs. As groups we get up and do things too. After that is parents lounge. The friends put our kids to bed while we go off and yap with other parents and do all different games etc. Obviously the highlight of our day.

The camp is designed for all the kids to have a great time and the parents to relax and enjoy some down time. The special friends are all such awesome kids. They have far too much energy!! They always have smiles on their faces and just want to do anything to help make it an enjoyable stay for both the kids and parents. Our friends were especially helpful as they missed a few breaks with Ken popping up to the hospital to see Ashley. They have really long days already, so that was really incredibly nice of them. The two boys did rock climbing as well. Nathan is like a spider. Just up he went! Nathan and Ashley (the one day she was there) especially liked the fishing. I met some really nice women who helped me through the blues when I found out my Mum was sick and back in the hospital.

So if all had gone as planned, it would have been an awesome break for us. We will look forward to the next getaway. Possibly in the fall, winter or next summer. We’ll see which one works out best. So if you have any kids over 18 who would like to spend a summer being with younger children, it’s an awesome experience. One of our friends came all the way from Montreal. If I was the parent of one of these kids that volunteers their time to a cause like this, I would be pretty proud of them. They’re all very ‘Special’ people.

Ken left the hospital today with Ashley around lunchtime. Ashley is still neutropenic but because the activities that we were going to were all outside, we decided to go. Ashley was not quite her usual chipper self, but we thought it was because she had Benadryl before her platelet transfusion this morning. We enjoyed ourselves at a Help A Child Smile event in Brantford. Go Carting and Mini-Put. Then it was off to Rebecca’s party. Rebecca was thrilled when Ashley showed up. We didn’t stay there long as Ashley felt a little warm. On the drive home she fell asleep and when she woke up I checked her temperature. We’re snookered again!! She has a neutropenic fever, which means we had to take her back in. Now we’ll be in until at least 48 hours after her last fever. Probably the minimum stay would be 5 days. It seems like we’re living in the hospital. I think we’ve seen the outside for maybe 2 weeks this summer. What a huge drag! Ken and I were both really disappointed as we were looking forward to some down time after the week we had. No such luck. We’re thankful Ashley at least had the few hours at Camp and was able to go to Rebecca’s party. The next hurdle will be school. Hopefully we’ve sorted out our lives somewhat by then.

So that’s where we’re at right now. I’ll let you know how this week goes with the fevers.

Bye for now.

Friday, August 16, 2002 at 12:18 AM (CDT)

Well we’re home from camp! A little early but I’ll explain why later. Our life is certainly not dull that’s for sure. I’ll try and catch you up on last week first. Beware this is probably going to be a long one. :-)

Ashley’s stomach pain was fairly short lived thank goodness. We still have no explanation for it. Very frustrating but at least she’s not in pain anymore. X-ray’s showed everything was fine, so who knows. The day after the stomach pains went away she ended up with chest pain. So we were moved to another room so she could be put on a heart monitor. That only lasted for a few hours thankfully and it never came back either. Her body is doing some weird things. She’s baffling the doctors for sure. She did continue to throw up which I didn’t figure out why until the last day of her chemo. When Ashley went through her treatment at original diagnosis, she needed an extra medication to keep her from throwing up. It’s actually the ‘hungry’ medicine she was on when she had radiation. They combine that with her anti-nausea medication and then she’s fine. Well when we relapsed and she had a new chemo it wasn’t as strong, so she didn’t need it. I had a discussion with the chemo pharmacist when she was put on this ICE chemo to confirm that she would be getting both drugs to control the nausea which he confirmed. Well when she got this chemo I didn’t clue in until day 3. I asked the nurse when were they giving her this extra medication as I hadn’t noticed them putting it in the IV, and she told me she wasn’t and hadn’t. I immediately realized why she had been sick. I thought it was too late to start giving it to her and nobody suggested trying to give it to her. So I thought we’d have to just ride it out. I was later informed they could have given it to her. So frustrating. So basically the poor little thing, who handles her chemos so well, would have again if she had the proper medications. Well I don’t know that for sure, but I do know she would have stood a better chance with both. I’ll have to keep a little better on my toes. Well absolutely everyone knows now that she needs it. I’ve asked the nurses and doctors to make sure it’s on her chart and I’ll be watching.

So to try and make a long story short she was finally feeling better on Saturday morning. She was starting to eat and drink. Not much but we thought we were starting to turn the corner. So they let us out for the day and if she did well we could keep her out. Well she wasn’t drinking as much as I knew she should, so we treated the kids to a movie ‘Spy Kids 2’ and then Ken and Ashley headed back into the hospital around 10:00. They had stopped giving her the one anti-nausea drug she was on, so Sunday she started throwing up again. We of course were supposed to leave for Camp that afternoon. So Ken finally convinced them to give her the medicine and she picked back up. So they checked out behind schedule but with Ashley raring to go! Our life just seemed to get more complicated after that. When they left the hospital her heart rate was higher than it should be, but again they had no explanation and told us she would be fine, so away we went.

We headed off to Camp late and missed dinner there. We met our ‘Special Friends’ when we got there. These are incredibly awesome young kids who spend most of their summer entertaining our children from 8:00 in the morning until 12 at night. They didn’t get to do too much that night because we were late. So they were all looking forward to the next day. Fishing at 7:00 am (eeeek!!) and the Polar Dip at 8:00 (again eeeek!). I let Ashley sleep past the fishing and when she woke up she was not impressed! So one of the ‘friends’ took her to go fishing but she came back within minutes saying she felt way too tired. Well obviously that’s not Ashley. So I took her over to the nurse’s station and gave her the anti-nausea med and took her back to bed. She slept for 2 hours and when she woke up I took her back to have her heart rate checked. Sure enough it was still high and she was so lethargic and pale that I knew she needed blood and was concerned about the heart rate. I called the hospital and they wanted to re-admit her. So much for camp! She was really good about it. One of the camp directors drove Ashley and I to the hospital where she got blood and the fun began. They figured out the heart rate problem. Her potassium was very low. Don’t ask me to explain potassium; all I can tell you is if it’s too low it causes high heart rate, very tired etc. etc. This is a side effect of chemo. So now the challenge. They were pumping her full of it and it wasn’t staying. They couldn’t release her until she was holding at a certain number on her own. So Ashley has been in the hospital until today when she was released on a day pass so she could at least enjoy one day at camp. I have so much to tell you about Camp but I will have to do that in a few days. This one is long enough already.

So I stayed at the hospital with Ashley from Monday until Wed. afternoon and Ken came yesterday and took over. I found out on Tuesday that my mother is not doing well. It’s been a difficult few days with being at the hospital with Ashley, wanting to be with my mother and also wanting to be with the rest of my family at camp. My mother was admitted to the hospital today, so I called mercy and asked the kids if we could come home so I could go see her. We left late enough that they only missed the night stuff today and breakfast tomorrow, so they were really good about it. Ashley was ok with going back to the hospital tonight knowing the other kids were coming home too.

I’ll end this now by saying ‘hopefully’ within the next few days we’ll be out with Ashley. To make matters worse she’s neutropenic now, so if she gets a fever we’re really snookered! We took our chances even taking her to camp, but life must go on! She’s due to go to Rebecca’s ‘No More Chemo Party’ on Saturday, so if she’s still in we’ll have to ask for another day pass. No way will she miss that! My mother is hopefully only in for a few days but we’re quite sure her disease is progressing. She’s having scans tomorrow and hopefully we’ll know more soon.

I’ll sign off and I promise to let you know all about Camp. We have some awesome pictures that I can’t wait to post. So,

Bye for now.

Sunday, August 11, 2002 at 01:08 PM (CDT)

Just a quick note to let you know we’re out. We actually came home yesterday, but had to take her back in last night, as Ashley was still not drinking enough fluids. Her spirit is back and hopefully the eating and drinking is to follow.

So we’ll have to go to clinic on Tuesday. I expect her numbers to be crashing, so I’m sure she’ll need some blood for sure.

So we’re off to Camp Trillium and we’ll just have to take it day by day. If she gets dehydrated we’ll have to take her back. We’re behind schedule because of her going into the hospital last night so I’ll do a longer post later.

Bye for now.

Wednesday, August 07, 2002 at 10:02 PM (CDT)

So we finally made it in! We went to clinic yesterday morning and her grans had only come up to .9 but they admitted her anyway. At first when I told her she misunderstood me and thought she wasn’t coming in. She responded by saying ‘what is it with those grans!!! ‘. She smiled big when she realized she was going to be able to spend one night with Austin.

Well sort of happy. Do you remember the stomach cramps she had a while back? Well we think their back. When I took her to clinic yesterday morning she was complaining of a tummy ache. While we were there she threw up. The doctor checked her out and said she was fine to come in for chemo, as we didn’t want to wait any longer. She didn’t have a fever so we assumed she was catching a virus or something.

I went to see my Mum yesterday and when I got back she opened the door and said ‘can I have my medicine?’ Well I knew her stomachache had to be pretty bad to ask for pain medicine. She managed to help me pack for the hospital and was waiting impatiently for Ken to come home from soccer so we could check in. What child is impatient to go to the hospital??? :-) She was anxious to play with Austin. I had to give her the bad news that until we knew what was causing her pain we couldn’t risk exposing Austin.

What a night! Her stomach cramps got so bad it was as if she was having contractions. She was writhing in pain and was throwing up constantly. They pumped her full of gravol hoping to at least stop the vomiting, but because she was doing that from pain and not nausea it wasn’t working either. I don’t remember between 4:30 this morning and 6:30 if she had any cramps (I crashed) but right up until about 1:30 this afternoon it was constant from last night. She was exhausted, I was exhausted and we have no idea what’s causing it. They called a resident in at about 3:00 this morning, but he was none the wiser. They have decided to order an x-ray, as one theory is she may have a urinary stone that she’s trying to pass. At this point no one knows. So she got her chemo anyway, and she’s still throwing up constantly. Could be the chemo now just to add to the confusion. She rested this afternoon thankfully, and when I left tonight she was still hurting but not quite so severe. Hopefully it’s going away. She’s bloated (again they don’t know why) and miserable. It’s a huge drag when she has been fabulous these past couple of weeks!

So hopefully next time I post I will tell you she’s doing fine and all has been resolved. We had an absolutely awesome weekend. We had company every day and the kids spent most of the time in the pool. Ashley too! So I’ll try and keep you up to date. This may mess with Camp Trillium, but one day at a time.

Bye for now.

Saturday, August 03, 2002 at 02:43 PM (CDT)

Our lives seem fairly jumbled right now. One minute we think we’re having chemo the next we’re not. We have not yet made it into the hospital for her chemo. Here’s the way our week went.

Tuesday we went to clinic to get her numbers done so we could admit her for chemo. I spoke to the doctor and really didn’t come out with any more information than I had from him the night before. I had thought because visually the neck tumor was gone that we stood a good chance that it was completely gone. No such luck. It is still there but obviously reduced greatly. So we are still dealing with all 3 tumors. They have all shrunk like I mentioned but he had no exact sizes to give me. I’ll have to remember to pester him for that info later. Just to mess with the plans we’d made, her grans were still too low. They hadn’t changed at all. So no chemo. We were told to come back in on Thursday to check again. We went over to visit Rebecca who was on her last day of chemo. Ashley and Rebecca were making plans to get together yet this summer seeing as they missed out on their party time together in the hospital. They are having a big party for Rebecca the middle of August to celebrate. We’re just hoping Ashley isn’t neutropenic and in the hospital with a fever. She would be really ticked about that!

So Wednesday Derek came home from Alberta. They sure looked scruffy! They all seemed to have a fabulous time. Lots of stories etc. It was nice to go as a whole family to the airport to pick him up. We had thought we’d be in for chemo so it was a treat to all be there for him. Danielle, Nathan and Ashley all had a play day on Wednesday, so that was again fun for them. Ashley didn’t want to leave her little friends house. It’s so nice to see her back in full swing!

Ashley’s little friend Austin (Beth’s son) has unfortunately relapsed again. Our hearts bleed for their family as options are getting fewer. Poor little thing has gone through the mill. He’s a fighter just like our Ashley and he was due to go in for more chemo on Friday. So plans were being made to share a room so they could play etc. Those grans are really starting to make her mad! We went in to clinic on Thursday and they are still only .7!!! I went over to tell her while she was playing with a bunch of kids and told her she wasn’t coming in for chemo. She slapped her hand on the table and said “Oh Man!” The people around her and the nurse with me just stared at her. I’m sure it’s the first time they’ve ever seen a child be ticked off at NOT getting chemo! Her plans messed up again. The only good thing about it is we are actually home for the long weekend.

So we are keeping busy with the hot weather. Trying to occupy the kids. It’s getting harder and more expensive!! Schools coming soon, right??? Ashley has been a fish the last few days. She can’t seem to swim enough. She looks like a deep-sea diver with her goggles, snorkel and dry suit. She’s so adorable!!!

So we will try again on Tuesday to check her numbers. I’m not even going to plan on going in this time so maybe it might happen. Planning doesn’t seem to work. We’re getting closer and closer to our trip to Camp Trillium. We’re supposed to go Aug. 11th so it’s getting tight. We already know while we’re there we’ll be traipsing back and forth from Simcoe to go to clinic. IF she goes in for chemo on Tuesday night, her numbers will be crashing while we’re at camp. Figures! Such is life.

I was asked to let you know how my Mum’s doing. She’s holding her own. I guess fighting is what our little Ashley has taught her. She’s not giving up. She gets chemo once every week for three weeks and then has a week break. She is tolerating the chemo very well except for being extremely tired. She’s weak and this heat is beating her up some. The tumors are breaking up but the doctors have told us to remember it’s not curative chemo, but palliative. If it gives us more time, we’ll take it. She is in God’s hands and thankfully still with us. Thank you for keeping her in your prayers.

Well wishing you all a good long weekend and hoping you all have air conditioning. It’s been really HOT.

Bye for now.

Tuesday, July 30, 2002 at 01:27 AM (CDT)

So clinic day went much as I expected. Her platelets were up to 88 but not the 100 that’s needed for her chemo. My discussion with the doctor that day was a bit confusing. He understood that we were in discussion with Michigan for an alternative treatment other than chemo, but he said normally we do 2 chemos and then scan and decide where to go. Well the other doctor wanted the scan after 1 chemo. So we decided that we would still go ahead and have the scan but plan to do the next chemo regardless of the results. This would mean we would give this chemo a full chance with 2 rounds instead of just the one. I was ok with all of this, as we obviously don’t want her off treatment for too long while decisions get made. So poor Rebecca and Ashley weren’t rooming together for Rebecca’s last chemo. I told her we would probably be in for Monday night and they would at least have one night together. How quickly plans change.

I’ll skip ahead to Monday’s clinic appt and go back to what mundane things we did in-between. When we went to clinic on Monday her platelets are up to 140. Yahoo! Her other numbers, like hemoglobin and her grans have dropped which is a bit confusing. Her grans number is actually only at .7 (these are her fighting cells) and neutropenic is .5. The doctor has now decided he wanted to wait until the results of the CT scan were in before scheduling the chemo, so we have to wait until Tuesday. So off we went to have the scan. The weirdest thing happened to Ashley that I guess is normal, but she’s never experienced it before in all the 3 years we’ve been doing these. They have to inject what they call contrast into her hickman in the middle of the scan. I guess to see where it flows to etc. She all of a sudden got all hot all over and felt like she was going to wet herself. She was freaking. They were trying to explain this was normal and would pass within minutes. She was none too impressed but carried on with the test. The sensation was over by the time she was done the scan and she was none the worse for ware thankfully. New for us that’s for sure. The doctor told us he would call us on Tuesday to let us know what was up.

I tried to sweet talk the radiologist into looking at her scans right away so maybe we would hear today. It must have worked. I had a call from the doctor by 5:00 telling us her results. Her tumors have all SHRUNK considerably. I don’t have all specific details yet as to how much or what’s left etc. but she’s headed in the right direction. We of course don’t even at this point know if it was the chemo or the radiation she had. We all know how responsive to radiation she is, so the three blasts they gave her could have played a dramatic roll in this response. Her neck tumor was gone almost within the week after radiation, so who knows what was already happening with the chest tumors before they gave her chemo. Anyway, the doctor wants us in again tomorrow (Tuesday) morning the recheck her numbers. He’s concerned the grans number is too low. Could change plans for chemo, who knows. We also need to sit and chat about where to go from here. I haven’t filled you all in (at least I don’t think I have) that we have been in discussion with the doctor in Michigan about doing the MIBG therapy Phase II Trial. I wrote about it in my July 5th entry if you want a recap. If the chemo works we won’t need to go and if it doesn’t work we need to go to Michigan for a test to see if she’s eligible. If she’s eligible we may have to start that fundraising I talked about forever ago. Her therapy itself would be covered but all her hospital time wouldn’t be. We’re in early stages of communication yet so we don’t have any dollar figures yet. I don’t think I want to know. Well when the decisions all get made we’ll let you know and I’ll explain in further detail what exactly would happen. At this point we don’t even know.

So now that I’ve totally confused you all, in summary we’re hopefully going in for another chemo tomorrow night. If all goes well with her numbers. After that chemo we’ll have to decide where to go. Who knows, after talking to the doctor this could all be moot. He may have come up with a whole new strategy. Every day changes around here!

So to back up, we have had a really nice weekend. It was quiet, swapping kids etc. I don’t even really remember what we did! The thing that sticks out most is Ashley went back in the pool!!! She put her dry suit back on and away she went. We were sure glad to see that. It told us Ashley was back in true form.

Oh ya, I forgot to tell you. The doctor ended up doing blood work on Ashley to check her kidney function because of the whole bladder thing. We also had an ultrasound. She still isn’t going lots but is a healthy little thing, so I’m sure all’s well. I’ll have to try and remember to get those results tomorrow too.

Derek’s coming home on Wednesday. It’s been a quiet week without him. You can actually check out where he went if you’re interested. They have a web page. He’s in Cadre Yellow #1. The scenery is breath taking. I’m sure it will have been an experience of a lifetime. www.cadetinternational.org

I’m a real yapper. I’m going to shut up now and head off to bed. I’ll try and catch you all up later in the week. I have spent forever trying to figure out how to download more pictures, but I have succeeded. Check them out!

Bye for now.

Wednesday, July 24, 2002 at 05:20 PM (CDT)

So what have we been up to? Last Friday Ashley had clinic day. As I expected her platelets had gone down, not up. She was at 7. The big decision seemed to be whether to give her a transfusion or not. I thought that it was pretty obvious she needed one especially before a weekend, but because she wasn’t responding to the transfusions it took them a while to decide yes they would transfuse her. They tried giving her ‘single donor’ platelets to see if that would help. She needed her Benadryl and Tylenol before so she wouldn’t react to them and surprisingly the Benadryl put her to sleep. I thought she was getting immune to it, but she slept for almost 4 hours that day.

Ashley’s hair was a mess coming out again. Ken finally buzzed her on Friday night. The poor thing is getting older now and is more sensitive to her baldness. She wanted it gone but at the same time is getting tired of being bald. Breaks our hearts. I wish she didn’t have to go through this!!! She’s adjusted again, just tells me she wants to wear a hat so people don’t see. :-(

Saturday we had a really great day. It was ‘Help a Child Smiles’ Canada’s Wonderland Day. Ashley wasn’t quite her usual cheery self yet but she seemed to have fun. She was quiet. We went to the water park in the afternoon and she wasn’t even really interested in splashing in the kid’s section. She cried after a Scooby Doo game/ride that you shoot things because her score was 0. We knew she was tired and still not herself after that. We managed to stay until almost close. We learned that next year we’d do the big roller coasters after 7:00 at night. Barely any line-ups then. I took Nathan on his first Big People roller coaster ride. :-) He did great. I must admit, I think I have more fun on these rides than any of the other kids. Nobody would go on Drop Zone or the Bunji Jump with me, so maybe next year I’ll find some other crazy person to go on with me. :-)

Ashley is giving me dehydration scares. When I took her to clinic on Friday I told them she was eating fine but not drinking enough. Rarely going to the bathroom. They told Ashley she had to go to the bathroom at least 4 times a day so to drink lots. Well Saturday she went first thing in the morning and didn’t go until Sunday morning. Obviously I was worried. We stayed home on Sunday and I tried to pump as much liquid as I could into her but she still only managed 3 times. She’s eating great and back to her usual self so this is the only thing still concerning me. We were a revolving door that day. It was a great day full of lots of visitors. We started at 1:00 and put the kids to bed finally at 11:30. Ashley and the kids enjoyed having everyone over. She still won’t go swimming. We’ll have to work on that.

Monday Nathan and Danielle were in VBS. I couldn’t take the chance with Ashley, so she couldn’t go this year. I was worried she may catch something again. I took Ashley to clinic while Derek hung out with Ken. Yay, her platelets were up. 56. All her other counts were great too. No more leg needles. She was supposed to have her CT scan in the afternoon, but the machine broke. Figures!! Supposedly it only happens one day out of every year. It had to happen on our day. So she was rescheduled to next Monday. I was upset at the delay, but the doctor said it would be fine, so we put our lives on hold for a week. It seems like so little a delay, but we are anxious as to where we go from here and if she’s responding to her treatment. Patience, patience, patience! I also asked them to hydrate her, as she hadn’t even been to the bathroom yet that day when I saw the doctor. He told me that she looked fine and we had to force her to drink. Easier said than done. I’m not even sure if she went once that day. I was off to see my mother in the afternoon and then Ken went one way with the kids for Danielle’s soccer game and I took Derek to St. Catherine’s for his game. It’s hard to monitor her when your not there!

Tuesday was a bit crazy as we were packing for Derek to go on his Camporee trip to Alberta. We managed to get it all either in or attached to his hiking backpack. Of course we were quite pleased with ourselves until we got to the airport. Everything had to be unattached and put in big plastic bags and so did his backpack. Oh well he’s off and I hope he has a great week.

The kids had their Wednesday play day again today. This is so great. Many, many thanks to Shelly for organizing it all for us. Every Wednesday is booked until school with an added treat of dinner at the end of the day provided by various wonderful people. Today Ashley went with Shelly’s family to African Lion Safari. What a treat for her. It was on our list of things to do this summer, which we may still do, but we’re happy she’s been incase we don’t manage to go. She had a super day and is right now arguing with Nathan about the animals. :-)

So tomorrow is clinic day again. It will be interesting to see how high her platelets are. If they are at a 100 she would have been due to go in for chemo. Of course depending on the results on her CT scan, which she didn’t have. I’m sure they won’t be, but if they are it will be frustrating. Ashley and Rebecca were hoping to do their chemo together tomorrow. Rebecca is on her last chemo so she was hoping to room with Ashley. Oh well we’ll have to try and go in and see her. I promised I would get Rebecca over in the summer for a swim. That will have to do.

So that’s it for now. We’re looking forward to a relaxing weekend. No sports as Derek’s away. I’ll let you know how next week goes with her CT Scan.

Bye for now.

Thursday, July 18, 2002 at 08:50 AM (CDT)

Well we’ve finally been set free!!! We are finally home after too long in the hospital. On Sunday Ashley was feeling much better, Monday she was feeling even better and Tuesday Ashley had returned in full swing! She hasn’t been out of her room in almost 8 days and not even a murmur. She didn’t even ask to go to the playroom. I’m kind of glad, because the last couple of days she could have gone. Her White Cells were high enough I could have taken her out, but wanted to avoid it like the plague. I now know how easy it is for her to catch something and what better place to catch it than a hospital playroom! She has busied herself coloring up a storm. From 8:30 in the morning until when she fell asleep she just colored and colored. Her wall was almost completely full. She’s really really good at it too. I know she was really enjoying being waited on hand and foot too! :-)

We’re glad to be home and back to normality. Well our version of normal anyway. All three kids were playing sports last night. Good thing we came home. It would have been interesting otherwise. We have been very fortunate to have a gal from our church organize our kid’s lives for us one day every week. Every Wednesday they are scheduled to go to a friend’s house without me having to worry about rides etc. And to top off our day even better we had a meal brought to us. It was awesome!!! The kids thoroughly enjoyed it and the Skittles for desert were a definite plus!!

For some reason Ashley is not responding to all her platelet transfusions. I’m still not sure why that’s happening. She’s left the hospital very low (11 - normal I think 110). They’re hoping she’s going to start producing her own soon. We’ll head into clinic on Friday to check as Saturday we’re due to go to Canada’s Wonderland with Help A Child Smile. It would be nice to have a few platelets just in case. She needs 100 platelets for her next chemo so I hope she starts producing her own soon. We’ll have to wait and see. There might be things happening with the MIBG Treatment in the states but I’ll let you know the beginning of the week after she has a CT Scan. We have to see if there’s been any response to her chemo to see where we go from here.

I’m keeping this one short. I haven’t spent anytime with my mother in forever so today I want to see her. I just wanted to tell you that we’re home and looking forward to being together for a few days before her next possible chemo.

Bye for now.

Saturday, July 13, 2002 at 10:58 PM (CDT)

So we’re still in the hospital as I write this. It doesn’t look as if we’ll be coming home anytime soon. We finally have a reason for the fevers. They always take blood cultures when you have a neutropenic fever to see if there’s any infection that she’s fighting. Well she had one. She has managed to catch what their calling Group A Strepp. For all of us Strepp throat is painful but manageable. Well for Ashley it was through her blood already. So knowing what she had makes it easier for them to treat. I was really surprised when Infectious Control showed up in our room to try and figure out where she got it from. I’m still not clear if this is not the usual Strepp that goes around but I obviously have to assume not if they sent Infectious Control in. We think we’ve narrowed it down to the Sunday School nursery she was in on Sunday. The short time we were home that’s the only public place she was and her two little friends that came over aren’t sick and weren’t sick. We now know no more church for Ashley. I actually second guessed myself when she went to the Sunday School, but I knew she would give me a hard time if I didn’t let her, and I knew her numbers were still good. Well we learn the hard way.

So over and above all that it’s been a very interesting and scary few days. Due to her chemo her numbers as I had mentioned are crashed. She got blood the first night we were in Tuesday and on Thursday she needed Platelets. I was downstairs with the other 3 kids getting them lunch while Ashley was being transfused. When I came back up there was all this hustle bustle in her room. She had a reaction to her Platelets. She has never ever reacted before so this was a shock. It wasn’t the usual reaction either. She started to shake so bad. Her temperature went from 36.7 to 39.3 in 5 minutes. Her blood pressure was way out of wack. Either too low or too high. She was shivering so badly that when I walked in the room you couldn’t see her she was so buried in blankets. Because this wasn’t a usual reaction they were stumped as to what to do with her. They were taking her blood pressure every 5 minutes. Doctors milling about deciding what to do. We managed to get some Tylenol in her to control the fever and thankfully the whole ordeal only lasted about an hour. Scary again. She has now been flagged to get Benadryl and Tylenol before getting a Platelet transfusion. So the next day she needed blood. Didn’t she spike a fever within 10 minutes again. They rushed in with the Benadryl and we gave her some Tylenol and managed to get a hold of it before the shakes started. Now she’s been flagged for Blood as well!!! Her throat that wasn’t sore when we were admitted has now flared up so bad she can’t swallow barely. The poor little thing is so frustrated that she wants to eat and can’t. They had to start her on Morphine for the pain in her throat so she could at least try and eat. They started her on TPN (IV Nutrients) last night so we could at least stabilize her weight. She’s skinny minny right now. So last night because her platelets are still fairly low and her throat is so bad she was spitting up blood. She had to have another platelet transfusion. This morning her platelets were borderline but they thought they would only transfuse if she spit up more or if she spiked a fever. (Fevers tend to eat up the platelets). Well she spiked a fever again so more platelets. You know how everyone would love to help in some way. I have a suggestion. Watching how many transfusions these children need I’m sure the blood banks could use your help. If you find some extra time maybe go and donate some blood or platelets. Us cancer parents would sure appreciate it!

So now that she’s on Morphine she’s fairly weepy. She doesn’t understand why she’s crying so much but something as little as I cut her cheese sandwich into triangles instead of squares devastated her. It’s heart wrenching! We hate having her on this stuff as these are some of the side effects, but watching her in pain is not much fun either. Today she started to itch from the Morphine as well. So I’m sure by tomorrow she’ll be getting Benadryl more often or they may have to figure out some other pain management.

So that’s where we’re at right now. Not where we’d like to be for sure. I feel so badly that she’s going through this. I’m sure it’s going to be a long stay as her White Cells (fighting cells) are still at 0. As long as she’s having fevers there won’t be any chance of coming home and with her battling this Strepp I’m sure those white cells won’t be climbing anytime soon. Hopefully we’ll have a few days before she’s admitted for her next chemo.

I hope now that we have all this transfusion stuff sorted out it will just be recovery from here on in. Everyday has brought us something different. We had the same nurse last week when we had the low heart rate as the day she had her freaky platelet reaction. She’s decided Ashley likes to keep her on her toes. :-)

So bye for now and I’ll try and post again soon.

Wednesday, July 10, 2002 at 10:21 PM (CDT)

We managed to make it home from the hospital on Saturday. Ashley came home pale and not her usual energy bunny self but she was home. We managed to have quite a nice weekend. She had two friends come and play with her on Sunday but she really didn’t have enough energy to play outside. She actually is not really interested in playing outside too much. She hasn’t been swimming. She’s played a little in the sand box but that’s it.

Monday was Ashley’s clinic visit and her numbers were surprisingly still quite good. She was due to go back in on Thursday when I knew her numbers should have crashed. She was still pale but trying to play. She’s not napping anymore so she was completely exhausted by the time she went to bed. She’s taking forever taking her medicines. She has lots to take and she’s not very impressed. She’s a trooper though. It might take a while but she does it. Bribing her with something usually works too. She was still eating up a storm so she would convince me that between medicines if she could eat something that would help. :-)

Tuesday was a good and bad day. She was very pale and I did actually think that if I didn’t know any better that she needed blood. I knew her numbers from Monday were good so I thought she still was battling the chemo affects. My Mum managed a very short visit. Her first time at someone’s house in almost 10 or more weeks. She was very weak but managed to get in the house. Her short and sweet visit was worth it. Ashley true to form must have known my Mum came for a hug. She squished her with a big hug and lots of kisses. Truly sweet and chokable. Two very brave people in my eyes. Comparing their heads, Ashley told her she’d be just like Grandma again soon. Ashley’s Kindergarten teacher came for a visit in the afternoon as well. She had fun playing in the sand box and playing other games etc. She was still quite pale after they left, but she convinced us to go to Swiss Chalet. When we were coming home she complained of having trouble breathing. I lay with her and watched her for a while when she went to sleep and she seemed ok. I thought she had just overdone it. Well not so. She had a fever of almost a 103 by 11:00. I knew we were supposed to have this happen on this chemo but I certainly didn’t think that we would only last 3 days. Emergency was great and got her in right away. Her numbers were so good the day before they thought we would probably be sent home, but they took her blood to check it anyway. Shock of all shocks. She’d crashed already. She was very neutropenic (low white cells) and she needed a blood transfusion. When your neutropenic and have a fever you are immediately admitted, so by 2:00 am we were upstairs. It sort of only got worse from there. Her blood pressure wouldn’t stabilize and by 9:00 am there was talk of her going to the ICU where they could monitor her better. She thankfully stabilized by mid morning so we were spared that ordeal. Scary, scary!! She is right now still not well, fighting fevers and not eating much again. We will have to see how the next few days go. I’m sure she’ll need more transfusions while we’re in. So that’s where we’re at right now. I’m sure Ashley will recover soon but I’ll try and keep you up to date.

Bye for now.

Friday, July 05, 2002 at 11:12 PM (CDT)

I should start this post letting you know Ashley is fairly well considering what her little body is fighting. Her heart rate is back to normal so who knows what that was all about. She’s back on her medicine that makes her eat all the time, so the weight that she had lost is starting to come back on. The chipmunk cheeks are coming back too. She has thankfully been tolerating this chemo well. So far. She does get tired and has been having naps, which I think has been helping her body to adjust to the battle within. Her tumor in her neck has already come down quite considerably. The radiation she had has obviously been working. If all goes well we will be home tomorrow sometime. Her chemo this time is only a 3-day cycle. They have told us they will book a CT scan before her next round to see if it is working. This chemo is supposed to really eat up her blood so we’ll be expecting more blood transfusions etc. Probably more possibility of fevers and hospital time. We’ll take it as it comes.

Our trip to Chicago. As I had said the trip went very well. It was a new experience for both Beth and I flying out of an Airport that neither of us knew, but it went off without a hitch. Chicago Airport was massive and we took an unnecessary tour of it trying to find our hotel shuttle. (My fault, I know Beth :-)). The Hotel was fantastic, right next to Lake Michigan. Our first night there was an introductory Pizza Party and we checked in quite late but still managed to get down to meet a few people. We met a Doctor whose life is dedicated to the research end of Neuroblastoma. Obviously we were very pleased to meet him. Beth’s son is taking pills that he was instrumental in discovering, so it was especially nice for them to talk shop. He is extremely knowledgeable on what drugs and trials etc. seem most beneficial for this stage that we are at. We spent quite a bit of time with him that night and he suggested a Phase II trial for Ashley involving an MIBG Treatment that is available in the States. So already the first night that we were there, just having such a knowledgeable person give a recommendation made me feel that the trip was worth it. We ended that night sitting and chatting with such wonderful people. This disease has claimed so many innocent children, but the parents that we met are so inspiring. They have taken their loss and turned it into energy to fight this disease. I’m not sure I could be so strong so to me they are exceptional people.

The next day there were many wonderful Doctors presenting, but we were able to spend some one on one with a Doctor from Philadelphia. He also agreed that the MIBG Treatment would be worth looking into. I should probably explain this therapy a little better before I tell you the help he offered. You’ve read that Ashley has a test called MIBG that she is injected with this radioactive Isotopes that search out Neuroblastoma cells. Well this is exactly that but using really big doses. It search’s out the cells and kills them (hopefully). It’s like having huge doses of radiation but it only attacks the tumors. The problem that we are facing is the trial being done could require a back up of Stem Cells. If you all remember she had a Stem Cell Transplant in March of 2000. Well the left over Stem Cells have been tested in Toronto and they have told us they are contaminated with Neuroblastoma. They can’t tell us how badly they are contaminated, just that there is evidence of NB. Without Stem Cell backup she may not be eligible for this trial. So with that all said, the Doctor that we spoke with told me that the test they have performed on her Stem Cells isn’t adequate and he recommended having them retested with another method. If I encountered any problems to contact him. That was just tickety boo. Another helpful Doctor. The Doctors that spoke that day were very gifted doctors but something that stuck out to me is the humbleness they felt that they really were no further along in treating and defeating relapse NB. Obviously that is terrifying as a parent to hear, but nothing that we haven’t heard before. It was the compassion and sympathy and frustration that came from each and every one of them that this disease is evading them. They all took time out to come and speak to a room full of parents, not other doctors, and share their knowledge, their hopes etc. Each of them had no problem sitting and chatting one on one and in reality that would be very difficult as each parent is only giving a summary of their child’s treatment. They offered advice, sympathy, and their phones numbers. They let us know that as parents getting together to learn and battle together that we had their admiration.

The following day the Doctor that I was looking forward to meeting was a doctor that was running one of the Phase II trials with the MIBG Treatment. I learned a lot from his talk and then managed to speak to him later. He was very sympathetic to Ashley’s situation and at the end of our talk gave me his number and asked me to have Ashley’s doctor call him. I was ecstatic. I know that all this information may never be of any use to us but just having the opportunity to have all these doctors to fall back on lifted my spirits. There is certain criteria that must be met to get on any Trial, so depending on what the situation is at the time with Ashley will determine which direction that we take. All in all I left feeling there was another door that was possibly open when and if we needed it.

I’ve turned this into another huge entry. I’ll try and end it by telling you Beth and I did manage to do a little sight seeing on the Saturday afternoon. It was most enjoyable. Our last night there was spent with some of the wonderful people we had met. It was a great trip but by Sunday morning I just wanted to come home. I was very thankful that we managed to get on an earlier flight. I was starting to embarrass myself in the airport. I thought we weren’t going to get on the earlier flight and the tears started rolling. Thankfully we got on. I’m sure I would have been a blubbering fool if we hadn’t.

As I write this I realize that we try so hard to be encouraging, hopeful etc. At the same time we are absolutely terrified. Ken and I spend many tiny moments with tears and despair. We are so afraid what the next months will bring us. I know we are supposed to have faith in healing and miracles but as I wrote earlier, each new tumor chips away at us. How can something so horrible exist? One of the doctors that weekend said that the doses of chemo that these kids get and tolerate, there is no way an adult would be able to handle it. These children, all of them that fight this monster are our hero’s. The strength and resilience that they constantly show us is completely humbling.

Well as I said before I don’t know if we’ll ever use the information I gathered, but it was a decision I won’t regret. I’ll end this by saying thank you to everyone who came and visited Ashley and for all the gifts. We went in with one bag; I think we’re coming home with three. :-) The support from all of you is so comforting.

Bye for now.

Monday, July 01, 2002 at 11:34 PM (CDT)

I had started an entry last Tuesday, but was waiting to post what Ashley’s tests results were on Wednesday. So I’m sorry I wasn’t able to post it, but our life from that day forward made another gigantic turn. Again for the worse. We’ve had a lot happen since then and the few days before, so I’ll see what I can remember and try and catch you all up.

Monday of last week she had a bone scan, which was clear. She had an ultrasound of her abdomen and her neck. The neck showed a mass approximately 4cm big. The abdomen was thankfully clear. The tumor behind her liver was gone. She was quite unwell through all this and her fevers were getting higher. By Tuesday she was quite sick. Her fevers were spiking close to 104 but she was thankfully responsive to her Tylenol. When I took her for her MIBG test on Wednesday morning it was with the intention of telling them they needed to admit her. She hadn’t eaten since Monday night and drinking was down to a minimum. So we had our test and unfortunately Ashley has had enough of them I’ve learned to recognize what should show up and what shouldn’t. Her neck lit up. Remember this is a test that they inject a radioactive isotope and it searches out Neuroblastoma specifically and lights it up. The unfortunate thing that I also noticed was she was lighting up in her chest. My heart sunk and I tried to tell myself that I must not be seeing correctly. I knew if I was correct I would know within the next couple of hours.

I took Ashley up to clinic and they knew immediately with one look at her that she was coming in to stay. They started the paperwork to admit her. The doctor called me in a few hours later to give me the bad news. Yes the neck was confirmed, as we had all expected, but it also showed evidence of two spots in her chest. He wouldn’t or couldn’t say too much about them, as he wanted to see the results of her CT scan, which was scheduled for the next day. He did say he wanted to talk to the Radiation Doctor but had to inform me that the radiation would really be palliative. That word killed me. How I managed to hold it together then I still don’t know. We did discuss chemo, but he said they couldn’t make any decisions on that yet. They needed all the data and they would make a team decision on Friday morning. My tears that afternoon were for the complete helplessness that we felt. Words can’t even describe the fears and devastation that is being heaped on us slowly one tumor at a time. Each time worse than the last. We know that this cancer is now completely aggressive and we are praying we can control it soon. Ashley our brave but sick little girl, just said ok when I told her we were coming in again. It has been almost 4 months since we were last on the ward. A few hours later we saw her first smile in what seemed like forever. She found out Rebecca was in. She hasn’t seen her in so long.

I now had to make another difficult decision. I was due to leave the next day for Chicago to attend the Neuroblastoma Reunion – conference. I felt there was no way I could go, but was so afraid that if I didn’t go, I would miss an opportunity of learning something new or meeting a Doctor that may bring a little hope back into our lives.

I had basically decided I wasn’t going, but Ken and family and friends encouraged me to still go. Ken too was afraid that I would miss learning something important. I still hadn’t completely made up my mind but from encouragement from all, I decided I would go, but left the final decision until after her CT scan the next morning. I arranged our lives as if I was going and see what happened. So through the help of family and friends I was able to find places for the other 3 kids to stay until Sunday and also someone everyday to stay with Ashley so Ken wouldn’t be 24/7. I came home and quickly packed a bag for Ashley and went to stay with her that night knowing if I went I would want all the time with her I could.

The next morning the decision was basically made for me. I had to leave around noon to drive to Buffalo for our flight, and her CT scan was changed from 10:30 to 11:30. I now couldn’t wait for the results or I would miss the plane. Ken the trooper that he is told me to go and we would keep in regular contact. I was only a plane ride away. So I rushed home to pack and flew out the door. I picked up Beth and off we went. Everything went off without a hitch. We made good time and our trip to Chicago was awesome. I will post later about that trip, as this entry is already too long. All I will tell you is I truly do not regret the decision to go. Ashley was in good hands and I can’t thank everyone enough that made it possible for me to go. I met many wonderful people and more importantly met some very nice Doctors and learned new things. I’ll try to let you know all about it soon. I will tell you that the way the trip went from start to finish I felt it was guided strongly through His hands.

The news from her CT scan showed the tumors in her chest weren’t good. None of them ever are, but again these are in such bad places. The one by her heart has returned. We all remember how bad that one was. The other one is on the top of her lung and wrapped around her bronchia. They were very afraid the tumors were going to obstruct her airway, as her oxygen wasn’t quite what they wanted, so they immediately started radiation. She had her first treatment on Friday. Ashley’s Radiologist and Radiation nurse were incredible. They and two incredible Radiation technicians opened up the clinic on Saturday and today a Holiday, to give her her radiation. We are so thankful to them. Hopefully through their quick actions the tumors will at least stop progressing so fast. She is unfortunately not able to receive any more actual treatments there to blow them away as she has already had full treatment in that area. So they did what they could to hopefully just stop it from progressing until we started chemo. Ashley our awesome little fighter lay on the radiation table with no mould this time. They needed to start right away and making a mould would have delayed them. She promised to lay still and bless her but she did. She couldn’t move a muscle and she didn’t. Ken was so incredibly proud of her.

So to catch you medically up to date, as of today, she is now done with radiation. We will be discussing starting chemo tomorrow. They want to start either tomorrow or the next day. She will probably be receiving a very nasty chemo called ICE. It’s strong and very hard on the organs. We need to hit these tumors hard and fast. She hasn’t had any chemo since February so who knows what else wants to brew up in her helpless little body. I came directly from the airport last night and stayed with her. I was soooo glad to see her. I was so anxious to be home that Beth and I did stand by to come home on an earlier flight. That was the first time either of us had ever done that. Again without a hitch. When she was sleeping last night her heart rate was much too slow. They are now worried that the tumors are against some nerves to the heart. They really don’t know, but it verifies that we need to start that chemo and fast. Her heart rate since then has remained lower than it should so she still needs to be hooked up to her heart monitor at night.

I’ll end this on a little bit of a happier note. We cut her loose for almost 10 hours today. She’s eating and drinking again so I asked if we could leave and come back for bedtime. They set us free assuring us her heart was stable enough to go and we went to Ken’s sister’s house (with air-conditioning!!!). She had a 3 hours nap and then woke up to her friend Brittany visiting. So she was well rested and even got to play for a few hours with her best friend. She smiled lots after her nap, so mission accomplished.

I’ll say goodnight for now as I really should have been in bed. Last night was only a few hours sleep at the hospital with all the heart stuff going on. I’m sorry I left you all hanging as to what was going on, but life was much too short on hours and emotions are still very raw. Thank you all for your wonderful comments in Ashley’s guest book. Our hearts lift with all the prayers.

Bye for now.

Sunday, June 23, 2002 at 02:35 PM (CDT)

Where to start. As I’m writing this we’re still trying to cope with the news we have to tell you. I had already written that Ashley has had a cold and hasn’t been feeling well. What I didn’t tell you was that on Tuesday night when Ken was putting her to bed, he noticed two pea size lumps by her collarbone in her neck. I had taken her to the doctor that morning, so trying not to panic; we decided to wait until Monday to see the doctor when she’s due to start her tests. Thursday night she asked to go to bed at 7:30. We all know that’s not Ashley. She was asleep within minutes and I had to wake her the next morning for school. She obviously wasn’t her usual cheery self, but being her last day of school, I bundled her up and shipped her out the door. She was standing at the end of the drive like a lost puppy. She started to heave in the driveway so in she came. I managed to give her some medicine and I drove her to school a little later. I knew she really didn’t feel like going but knowing it was her last day I didn’t want her to regret not going. She went and all went well. That night Danielle asked what the big lump was on her neck. We looked and what a shock. Those two little lumps were now a large mass. Freak was not quite the word. Trying to decide what to do when we know the doctors can’t do or confirm anything without tests. We called anyway, and the doctor was nice enough to see us Saturday morning. He has basically confirmed a nightmare beyond words. He believes she has a new tumor in her neck. She doesn’t show any sign of infection. She has a head cold yes, but no infection to cause this large of swollen gland. He also said if it was an infection it should hurt. It is causing Ashley no discomfort whatsoever. Our world is continually rocked but this is a complete bulldozer. We still need the tests to fully confirm everything, as it could now be wide spread within her little body, but this is so not good. This disease showing up in her original spots was bad enough, but showing up in new spots is telling us this disease is now fully active and so much harder to control. The norm for Neuroblastoma.

Ashley has been really unwell since Thursday night. She is grumpy and tired. Moaning in a quiet sort of way. Friday night she started running low-grade temperatures that the doctor said could be from the tumor. Last night she cried when she found a toy she didn’t know she had. A gift from someone in the hospital that she hadn’t played with in a while. As she clutched it to her chest and cried, she said ‘I didn’t know I had this’. She is so incredibly sensitive right now. These are all things that have been slowly coming for the past month. Parent’s intuition. When I asked them to scan her a month ago, it was because it was instinct kicking in. Learn to trust your instincts, as parents their usually right.

We can all hope and pray that the doctor is wrong and the tests show it is a swollen gland, but we must prepare to except reality and get ready to fight the next battle. It gets harder and harder, and like I said before, the decisions we may have to make I wouldn’t wish on anyone. Please pray hard and long for Ashley, first that this isn’t so and secondly if it is, to at least remain as free spirited and strong as she always has. We know not what His will is, but we will always trust in Him. As difficult as this journey is for us and for all of you who care so deeply, we must continue to believe in miracles. We’re still not ready to give up, as Ashley the fighter that she is, probably wouldn’t let us anyway. I hope I’m not premature in writing this journal to you all, but if our prayers are answered and it’s nothing, you will at least know the nightmare that existed, even if for a few days.

Bye for now.

Thursday, June 20, 2002 at 10:15 AM (CDT)

A whole week again. Not much is happening. Ken and I had our weekend away, which was great. It was lousy weather but we still managed to get some golfing in. The kids had a great time while we were gone. It wasn’t the greatest weather for being outside. They didn’t even manage to swim but Bugs and Linda managed to keep them occupied. Bugs took over with the soccer. Nathan had a game on Friday night and Derek a 2 hours practice on Saturday. We came home on Monday to Ashley being home from school. She has a cold. Figures the last week of school she’d get sick. We had a mushy moment went we came home. Ashley hugged us and the silent tears rolled. She thoroughly enjoyed her weekend, but she was glad we were back.

I took her into school yesterday hoping she’d make it through the day. She did but she was very tired. We had lots of soccer last night and she was wrapped up in a big blanket looking cuddly enough to go to sleep. Ken and I were actually both in Dundas with the kid’s soccer, so we managed to rendezvous at Dairy Queen. The kids constantly bug for an ice cream, so finally last night we managed to go. Ashley crashed the minute she got home. I hope she’s well enough to go to school on her last day, tomorrow.

She’s having a play day with Brittany today, so she’s pretty happy. It didn’t matter if she wasn’t feeling well when it comes to having Brittany over! We have a night off from sports tonight. Yahoo! Danielle is now done her dance, so that will free up Tuesday and Wednesdays from 4:30 – 6:30. Ashley has one more class to go to. Saturday if we make it. We’ll see as we also have our school golf tournament this weekend. Hopefully its nice weather. Thanks goodness it wasn’t last weekend.

Well I’m going to keep this entry short. The kids are off school after tomorrow. I’m looking forward to not making lunches. I normally put the kids in a few summer camps, but this year they don’t seem as interested. It will be a very long summer without them I’m sure. We have our trip to Camp Trillium in August. That will be fun.

Well Ashley starts her tests on Monday. We’re very anxious. I’m going to beg and plead with the doctors to get her results by Thursday. I leave for Chicago in the afternoon, so hopefully they can look at her scans right away.

So bye for now.

Wednesday, June 12, 2002 at 07:48 PM (CDT)

So not too much new happening around here. Just the usual sports etc. With Ashley being off treatment right now, we’re not even going to clinic. Last week Wednesday was the usual run around. Thursday we actually had no sports again. That is so nice when we get a free night. I took full advantage and watched a movie with Ashley after supper. Of course that was me done in for the night. I know she was tired, so I thought she would fall asleep, I just beat her to it. :-)

To change the subject again, my Mum has finally come home from the hospital. For how long we’re not sure, but for now she’s glad to be home. It was a very long 8 weeks.

Other than that we took Danielle into Ancaster on Saturday to present one of her dances. We were supposed to be in the parade that morning, but Ashley was going to go as well and they had to walk the streets. They had no float this year so I decided that would be too much so we waited to go until the afternoon. Of course Danielle forgot her shoes for her dance, so we had to go pick them up again. Ashley’s teacher asked what it was with us and shoes. :-)

Ashley had a good Sunday; she had Brittany over to play. The kids wanted to go to their friends and cousins church. We know why now. We came home with a couple of extra kids. Oh well they had fun. The pool is open and their keeping busy swimming. Ashley has been having a great time with her dry suit. She floats in it as well which is handy. She desperately wants her line out but I told her if we take it out before the end of the month they would have to IV her for her tests. She’s decided she can wait.

Just the usual sports things going on this week. Derek had two away games, St. Catherine’s and Mississauga. Thank goodness I love driving. Ken is busy with coaching Danielle’s team so he hasn’t been able to go to his games. He’s coached Derek for three years so he misses seeing them play. All the kids had their check up’s at the dentist on Monday. Ashley’s visit didn’t go as well as the last time. She wasn’t feeling as co-operative. I’ve been getting quite worried over the grumpiness she’s having more often. Well the dentist informed me she’s getting her back molars so if she’s grumpy that’s probably why. It’s nice to think there could be another reason for it. As parents with children with cancer even something as little as irritability sends fear, so hopefully it’s those teeth!

We have finally booked a weekend away without the kids. Yahoo! Friends of ours are coming in to stay with the kids this weekend, which will be awesome. No packing or farming them out. We’re quite looking forward to it.

It’s actually going to be a busy month. The end of June Austin’s Mom Beth and I are going to Chicago for a Neuroblastoma Reunion (Conference). They will have doctors there that I am hoping will provide some insight as to what other treatment options might be available. The states just seems to have more trials or different options than what we have here in Canada. We’re at that point now when depending on her results at the end of June, we should be looking at new things. Anyway we’ll be gone from a Thursday to a Sunday, no kids or husbands. Sounds horrible doesn’t it :-). Over and above all that it will be nice to meet some of the family’s from the Neuroblastoma group. To be in a room where all the families have children with the same disease will probably be overwhelming.

So all’s fairly normal. Ashley’s tests are coming up soon. June 24th is the start of her tests and she’ll be done them all by the Thursday the 27th. I’m hoping we can have verbal reports on the Thursday so when I go to Chicago later that day I will know where she’s at. If I am able to talk to any of the doctors there it’s easier knowing if she’s disease free or not.

I just looked in my day timer for next week and realized that our kids are finished school on the Friday. Eeeeks!!! Where has this school year gone??? I’m not ready for the daily ‘can we have so and so over’ that I’m sure you all get as well. Chicago is looking better and better!!

Not too much should be going on next week, but if anything does I’ll let you know. We have managed to get some pictures of Ashley in her costume. I’m going to try and put one on tonight. Of course I’m having problems saving my pictures so I can download but I’ll see if I can pull it off.

Bye for now.

Wednesday, June 05, 2002 at 10:26 AM (CDT)

So Ashley’s done her radiation! Her last visit went awesome as usual. Off we went bright and early. Big mad rush with trying to pack 4 lunches’s and be out of the house by 7:30. Ashley was spoiled again. If you all remember the last time she finished her chest radiation they gave her a $25 gift certificate for Toys R Us. Well didn’t she get another one. She now has $50 to spend on herself. She’s pretty happy with that. She already knows what she wants to buy. Another doll! Ken I’m sure will just smile and shake his head when we finally buy it. He’s amazed at how many Barbie’s and dolls these girls have, and they still want more. He can’t fathom it. I guess I shouldn’t tell him it might be the same as all those tools he has that don’t get used :-).

Well believe it or not, life has been sort of normal around here. Ashley went to school on Friday after radiation and had a whole day. I told the teacher she had her for the rest of the school year with no interruptions. She’s not due for her scans until the end of June and she’ll be out of school by then. Saturday and Sunday were fun and relaxing. Every year we have a golf tournament with all our friends. So Saturday was a great day, awesome weather, lots of laughs, just a great time. Sunday we had some new friends come to visit and the kids had a great time. Ashley loved playing with her new friend and is already on a count down until she sees her again.

Monday was a bit chaotic again. I went to work for the day and was hoping to pick Ashley and Danielle up at school to get them ready for their pictures. Of course that didn’t go as planned, so when they got off the bus it was a mad house. We were rushing to put costumes on, do hair and makeup. Thank goodness Ashley doesn’t need her hair done! We were at the studio from 4:30 until almost 9:00. We had an hour and half break in-between pictures so what do all girls do with time on their hands. Shop!! It was a busy night. I thought it would be the last time the costumes would be out. I was wrong. They’ve been asked to be in the Ancaster Parade this Saturday. Danielle’s group has also been asked to present her Silly Squirrel dance Saturday afternoon. So I guess we won’t put the costumes away just yet.

Well yesterday was another busy day. I was at work again and as I haven’t seen my Mum since Friday I actually cancelled Danielle’s dance that night. I really didn’t know how we were going to pull it all off. She had dance from 4:30 until 6:30, but she also had a soccer game at 6:30 and Derek had a game. So I think for the first time her whole dance season we played hooky. I was able to see my Mum after work and be home in time to take Derek to his game. When I went to see my Mum I took a video of the girls dance recital. The studio didn’t know how long the full video would take, so they had a video done with just Danielle and Ashley’s dance on it for my Mum. Isn’t that sweet! So we rolled a TV into her room, darkened the room etc. I offered them popcorn, but it was a no go. :-). They thoroughly enjoyed it. My Mum was so proud of the girls. My Mum’s roommate was pretty impressed too.

So that’s been it up to now. Ashley didn’t want to go to school today, but we managed to get her out the door. She took the video to school hoping to show her teacher today. She’s getting lazy in the mornings just like me. Bad thing I’m teaching her! Well I’m off to work again so bye for now.

I took pictures on Monday night and of course the camera wasn’t on auto focus. Ooops! So the pictures are really not very good. Saturday I will try again. I promise pictures soon!

Bye!

Thursday, May 30, 2002 at 10:06 PM (CDT)

This entry may be a bit choppy, as I have been trying to post it all week, so bare with me.

Saturday morning was just as we could have expected. Ashley had a fever! I had to wake her up to try and get the girls in Brantford by 8:30. She definitely wasn’t feeling well. She wasn’t complaining of any pain anymore but because of the fever I gave her some medicine. She was really cold, so bundled her up and off we went. By the time we got to the theatre the medicine had kicked in, thank goodness. She was ready to dance! It was a bit hectic in the theatre. Managed to get everyone dressed and with their teachers. The recital wasn’t until 2:00 but they were practicing until 12:00. I certainly under normal conditions wouldn’t take Ashley somewhere when she’s sick, but I knew I had no choice this time. Today was much too important.

The recital was completely awesome. What a fabulous job the studio did. The first half of the program was all the competitive dancers and the second half was all the recreation dancers. So Danielle had 2 dances in the first half and one in the second. Their group did a perfect job on their dances. Ashley’s group was adorable. She did fabulous! We managed to get through it without using a whole box of Kleenex. Ashley’s cousin was in the recital this year for her first year of dance. It was great to see her up there as well. Great job Katie!! I was up and down like a yo-yo getting Danielle in and out of costumes, so I think that helped us to not get too choked up. Ashley was a trooper when it came time to put make up on. Can you believe we forgot the camera in all the hustle bustle!! So I don’t have a picture yet to post. They have picture day on Monday so I have to get them all dressed up again. We’ll take pictures then and I’ll post them. Ashley wasn’t feeling well by the end of the show. She was getting really grouchy, which I knew was a sign. Then she got cold again. She was dressed in 2 shirts and a coat and was still cold. She lay on the floor outside the theatre while she waited for me to pack up and fell sound asleep. Poor little thing. Even with her being sick we managed to get through the day and it was most enjoyable. It was great to have so many friends with us to share our special day. Even the dance studio owner was incredibly pleased that Ashley was able to be a part of the show. We were able to end our day with Kathy’s birthday party. Lots of fun, but we were tired.

Sunday Ashley slept in, but woke up with no fever. Very strange. She is certainly puzzling us, but I’m going to pretend she’s a normal 5 year old and try not to worry. We had a nice lazy day. Monday Ashley was able to go to school. She had radiation later in the afternoon, which Ken took her to. I was off to see my Mum. We normally give her anti-nausea medicine before she goes just incase, but because she was at school she didn’t get it. She fell asleep on the way home and woke up sick. Once I gave her the medicine she was all right. So I guess that means she definitely needs that one shot of medicine a day. Danielle and Nathan had their first soccer games that night. They both won so were pretty happy. Danielle got her first goal of the season. Ken’s coaching her team this year so she’s even happier about that. We paid for that nap that Ashley had. She was up until 11:00.

Tuesday she had radiation right after lunch. It went well before and after. (I made sure she had her medicine). She only has 3 more treatments to go. Friday is her last one! Amazing enough we only had Danielle’s dance that night. So it made for a fairly relaxing evening. Ashley went to bed on time and slept right through.

Wednesday Ashley went to school in the morning and had radiation in the afternoon. She’s impressed the girls at the radiation department so much with her cheerfulness that one of the girls brought her in one of her favorite CD ‘s for her to keep. She asks for loud music while she’s having the radiation and lies there and sings. We watch her through a camera and its pretty adorable. Wed night was busy with Danielle’s dance and both boys having soccer practice. I took both the girls up to see my Mum and Ashley and Grandma were comparing their baldness. My Mum’s beating her right now!

Thursday was clinic day. Nothing-unusual there. Numbers are still great and then we rushed off to a 12:00 radiation appt. Thursday night amazing enough we had NO sports! So we took the kids to a Fun Fair at the school that Ashley used to go to for JK. We were hoping to see her teacher but we missed her. Ashley was quite excited about seeing her again as she hasn’t forgotten her. Oh well, I’ll have to try and take her for a visit during the day soon. They had a good time and were in bed much too late again.

Well tomorrow’s bright and early for her last radiation appt. 8:00 am, so she’ll be able to have a full day at school. We will be a normal family for the month of June. Ok I know I said that before and everything went to pot, so maybe I take that back! We’ll see how June goes, how’s that? :-) I’ll try and get those pictures of Ashley and Danielle in the beginning of the week.

Bye for now.

Sunday, May 26, 2002 at 12:40 AM (CDT)

I wrote this journal Friday and didn’t have time to post it. It will be too long if I include our weekend, so I’ll post this one first.

Well this week is turning out to be a typical week in our busy life. Ashley had a visit in her Kindergarten class on Tuesday. I know that’s probably confusing, but if you remember she’s supposed to be in JK not SK. So she will actually be doing her SK class twice. So she went to meet all her new classmates that she’ll have in September. She is already looking forward to it, as Brittany her best friend is in her class. She had radiation after that which of course went well. The Radiation Doctor came to see her and he’s pleased with how well she’s handling it still. Aren’t we all!! Tuesday night was of course crazy with dance and soccer.

Wednesday was very chaotic. I changed Ashley’s radiation appt from the middle of the morning to very early so she could participate in the schools field day. So we were out of the house bright and early. So much for a sleep in on my birthday :-(. So she was back at school just after 9:00 and ready to play. It was awesome weather for the kids to be outside doing their sports. All the kids did great. The challenge was catching all of them doing something. It was a quick shuffle from one event to the other to try and see them. My Aunt and Uncle enjoyed visiting the school and seeing the kids having fun with their events. We then scooted off to see my Mum and were back in time for Ashley’s weekly visit with her VON nurse. She’s not enjoying her bandage changes right now. We’re not sure what’s up with her hickman, but the cleaning solution is really stinging. She actually screams from the sting. Definitely not normal, but it’s not red or sore looking. She doesn’t have any sign of infection at all, so we’re a bit stumped. She’s throwing curves at us lately that make no sense at all. We’re guessing that the inside where the hickman is may be sore. Might be time for this thing to come out. We’ll wait until after her next batch of scans and then maybe look at having it removed. Then it was off to dance again and 2 soccer practices. Ken was doing most of the running around, so it was crazy for him. Then we had some friends over later in the night. The kids were up until a ridiculous hour. It was such a crazy day with no one being home at the same time, that I opened my presents at 11:00 at night! It was a good day all in all.

Thursday was clinic day. I took my Aunt and Uncle so they could see Ashley’s home turf. Of course her numbers are still excellent. I thought I would mention my paranoia to the doctor about tumors growing elsewhere. With this last tumor growing so quickly we’re obviously worried that ‘what’ if it’s somewhere else. I asked if we could have a CT scan soon just to check and then have the scheduled full tests, which are at the end of June. The doctor brought me in to have a little ‘chat’. Well I left in tears. It is so hard to except or understand when a doctor has to remind us that this disease is considered terminal. As I said before, Ashley is so absolutely awesome, how could something so terrible be inside of her? He has said scanning more often won’t change the outcome. I wasn’t upset because they wouldn’t do an extra scan. I didn’t really expect them to. I just thought I’d try. It was the dose of reality that was once again given to us. The Doctor was just trying to gently remind me. Sometimes you feel like a roller coaster. You put on your strong fighting shoes and then you get hit with reality. Then you have to give your head a shake and put them on again. This is happening time and time again. We try so hard to live our lives as normal as possible and enjoy a full life with all our kids. The decisions that we have to make with Ashley are the most difficult ones I think we’ll have to experience in our whole lifetime. Never fear though, as much as the doctor wanted to bring me back to reality, WE STILL HAVE OUR FIGHTING SHOES ON!!!

We managed to have lunch with Austin and his Mom after clinic. Beth and I managed to go off and have a chat that made me feel a little better. It’s a common bond we share with both our children having Neuroblastoma. We talked about how hard it is to hear the words that have to come from the Doctors. The constant fears and the constant worry about the future. We sometimes find it hard to express to people what its really like emotionally to have a child with cancer. We talked about what miracles all children are, but especially the children who day after day go through so much with such resilience. They are our true miracles and our hero’s!

Well we’re on a countdown. Only one more sleep to go until the recital. She had her practice last night on stage and all went well. She thinks she’s going to be too shy. Yah right!! As I write this she’s actually complaining of pains in her chest. Eeek!! Let’s hope its nothing as we all know how important tomorrow is. So I’ll sign off now. Sorry that I may have depressed you all, but the feedback from this journal has been so positive because we try and tell you all exactly how it is. Unfortunately this is how it is. We will rejoice tomorrow in another milestone for Ashley and praise God that he continues to show us his blessings.

Bye for now.

Monday, May 20, 2002 at 10:20 PM (CDT)

Almost a week again. I’m sorry, but time does seem to fly by. Ashley has had an excellent week. Monday she had her radiation and then went off to school as planned. It was so cute when we got to school. The teacher came out to meet us and her classmates were all at the window yelling “Ashley’s here!” We went in and they started to pour out of the classroom to see her. You would think it would bother the teacher to have her class disrupted, but she too thought it was so sweet that the kids get so excited to see her!

I can barely remember what we all got up to last week. Tuesday when we had radiation we also had to see the Doctor so he could check how she was doing. He was amazed that she has been so well. I asked if she could still start to be sick, and he assured me, she should have already been sick. If she hasn’t by now, she probably won’t be. That was good news. So yet again, she defies the norm and handles everything well.

Wednesday she went to school after her radiation. She’s having such good days. She is so good when we go for radiation. She just jumps up on the table and helps them set everything up. When she’s done they know now to give her the controls so she can operate the bed and lights. It’s cute.

Thursday she had a birthday party to go to. She had a great time and is already looking forward to her next birthday. She’s decided she should change her birthday to the summer so she can have friends over to swim. Trying to explain to her she can’t change her birthday didn’t go over so well. I told her she could have friends over for a pool party but no presents. She’s ok with that. :-)

Friday was a bit of a mess. We started our day with going to Ashley’s cousin’s High School. Janine was doing a class project on Neuroblastoma, so she asked if I could bring Ashley in. So we visited there for an hour then rushed back to Mac for her clinic day. We were thankfully not there too long. Her numbers are still excellent. Radiation doesn’t seem to be affecting them at all.

I did get a chance to talk to her clinic nurse. The size of the mass was bigger than I thought. It had doubled in size in just 2 weeks. That was the difference from when they found the new tumor the end of April to her emergency ultrasound May 8th from the cramps. That was very scary. Now of course comes the worry that it’s getting very aggressive again. We’re certainly glad they started radiation as quickly as they did. I wish we could scan her every week!! With only radiating in one spot, she isn’t receiving treatment in the rest of her body. When Ashley went through radiation for her chest I had expressed concern that she could be growing tumors elsewhere. When she had her radiation CT done near the end of her treatment in March, they pacified me by checking her abdomen as well. They obviously didn’t find anything, so we know this tumor was fast growing. It took only less than a month for it to grow to almost 5cm. We will anxiously await the results from her next scans!

We had rushed from Mac to the Cancer Clinic for her noon appt. I didn’t realize Ashley had a school trip Friday afternoon and her radiation was scheduled right for when they were to leave. Her class had tried to wait for her, but finally left. So she missed out on a trip to a small petting zoo. She actually fell asleep coming home, so it was just as well. She’s still going to bed great. We could get used to this!!

Saturday morning she had her last practice in the studio. We got their costumes and they look adorable! They are French maids. They’re dancing to Be My Guest from Beauty and the Beast. She’s getting very excited. They have a rehearsal on Thursday night in the theatre and again on Saturday morning before the show. I’m getting choked up just thinking of her on the stage. We’d better take lots of Kleenex. After dance we took the kids to Springfest. It’s another fundraiser for our school. Ashley had her face painted as a Giraffe and had a great time spending money (she’s all girl!!). She was in such a good mood, she was giving people she knew big huge hugs. She gave her VON nurse such a good hug it scored her $2 to spend. She thought that was great and off she went!

Yesterday she went to a friends after church. She had a great time. When you watch her interact with other children and just the simple enjoyment of life it sometimes sets you back. You sit back sometimes and just watch her. How can such a loving, carefree child have something so terrible inside of her? It brings tears to your eyes just watching her enjoy life to the fullest. We are part of a Neuroblastoma group for parents from all over the world. It has been especially sad lately with the death of a few children and a few more that are home awaiting their pain to end. It saddens us to no end to see this disease claim so many innocent children. It also shows us how powerful it really is. We are so very blessed that Ashley is so strong and free spirited. We will continue to pray for that miracle that so many parents strive for with this disease.

On a lighter note, we have more relatives over from England. My Aunt (sister to my Dad, who passed away many years ago) and Uncle have come to spend time with my Mum. It is especially nice to see them, as it has been over 20 years since our family has seen each other. We’ll see if they survive living in our hectic household as well as my other Aunt and Uncle did. :-) We actually are starting soccer this week as well. Derek, Danielle and Nathan all play soccer, so it’s going to get even crazier!! Is that even possible? Derek is playing Rep soccer this year. Last year was crazy busy with him being on a House League and a Select Team. Also regular call-ups. When he was offered Rep, we were scared at how much time that would entail, but Ken realized that he probably played at least 4 nights a week last year. Derek decided to go for it, so we’ll survive. Danielle will clash for the month of June. She will be playing soccer and still dancing, so that’s going to be interesting. Remember I talked about cloning??? :-)

What a long entry that was. I’m going to sign off now, but not without embarrassing my sister in-law. HAPPY 40TH BIRTHDAY KATHY!!! Kathy and I always celebrate our birthdays together as we’re just one day apart, but this year ITS ALL YOURS KATHY!! Wishing you a wonderful day and we’re looking forward to your big bash.

Bye for now.

Monday, May 13, 2002 at 07:43 AM (CDT)

Well the good news is Ashley’s stomach cramps have disappeared as fast as they came. How does that happen?? I’ll certainly take it, but after seeing her in so much pain for almost a full week, it is weird. Friday she had her last cramps at 4:30 in the morning. I was going to try sending her to school that day, so I gave her medicine before she went hoping that would hold her off for at least half a day. She lasted for a full day at school! I managed to do everything I needed to for going away that night. We set off for the boarder around 4:30 and made excellent time. Managed to get over with no problems. Jacki being a landed immigrant :-) we thought maybe we’d have some problems. Hotel was great. Danielle and Hayley had lots of fun in the pool etc. We unfortunately had to be in Grand Island by 7:30 in the morning. So we were up early. It was all worth it again. The girls did awesome!1st and Gold in Tap, 1st and Gold in Jazz and then an overall 1st for their age group. 3 Trophies for the dance studio! We were home at a half decent time, but tired from our early morning. (What happened to Saturdays being a sleep in day?) The world has created Saturday to be just as busy as weekdays!!

While we were gone Ken managed to get Ashley to her dance class on Saturday morning. Not long to go for the recital. I’m getting excited for her. Derek was at some Cadet thing, in preparation for his trip to Alberta this summer. The International Cadet Camporee. A whole week from home, flying out to Alberta with I think another 2000 Cadets from all over. What an experience that will be. After dance, Nathan ended up playing at his cousin’s and little Ashley was quite upset she wasn’t off at a friends too. Finally Brittany called her at 3:00 to go over. It made her day!! So everyone had a good Saturday.

Mother’s day was great. My Mum was out for a few hours, so we had to miss Church to see her while she was out. It was nice to see her at home, even for such a small amount of time. Off to Ken’s Mom after that where we stayed for the afternoon. Oh ya, I almost forgot, I actually got breakfast in bed this year!!! My first time ever and it was great! I hope the rest of you mothers had a great day too.

Well today Ashley has radiation in the morning, so I’m hoping she’ll go to school this afternoon. We may be being blessed yet again. So far no nausea. Other than being just slightly more tired, which with Ashley is barely noticeable, she’s feeling great. Her hair is growing back. I try not to get too excited about it, as who knows what’s next for her. She may end up with more chemo at some point and it will all come out again. Ashley has actually been going to bed at half decent times and staying in bed. This is where I think the radiation has kicked in, because she’s sleeping through the night. Definitely not the norm for her. Normally she’s in our bed by 1or 2 in the morning. Well we won’t complain about that!

Anyway, have a good week. I’m hoping when we go to clinic this week, we’ll talk more about the size and exact placement of this new tumor. So I’ll let you know. Bye for now.

Thursday, May 09, 2002 at 10:55 AM (CDT)

Well I’m just going to send a quick note letting you know what we’ve been up to. I took Ashley to the clinic on Tuesday morning and of course she felt fine. So the doctor was a bit stumped as to what could be causing the abdominal cramps. He asked for a urine sample and off we went. We went and visited Rebecca who was on her last day of her chemo. She’s going to be on CH TV tonight at 6:00 and also on Sunday morning I think around 10:00 on the Mothers Day Telethon. Ashley had a nice visit. Of course when we were leaving the hospital she was doubled over with cramps again. I knew the clinic was done at noon so I couldn’t take her back up. I brought her home and the Tylenol worked again. She had them again before bed. These are getting really frustrating! We’re loosing sleep in the night over them.

So Wednesday I thought we’d at least try and send her to school. She wanted to go so she could do sharing time. It didn’t last long. She had cramps within ½ hour of being at school. So now I had to mean to her. I knew the best chance we had for them to figure out these cramps was to take her in with them. So I couldn’t give her anything for the pain. She was pretty upset with me, but was trying to be good about it. Took her back to clinic and it was pretty obvious she was hurting. I asked the clinic nurse to try and have the doctor see her ASAP so I could give her some pain med’s. She was trying hard but it was so busy. Ashley by this time was going quite mental with the pain. She was almost screaming at me to give her her medicine! I can’t even remember if she has ever begged me for medicine before. After seeing the state she was in, the clinic nurse went and pulled the doctor from where he was. After a quick feel around he let me give her the medicine and asked the nurse to have an ultrasound done right away. Well within 15 minutes I had a totally different child. She was completely back to normal. I’m so glad that they got to see what she’s going through as much as it was horrible seeing her in pain for so long. So we had an ultrasound at 3:00, which meant no eating again. Poor Ashley! She survived that by packing a lunch for after. She was ready to eat the minute it was done. She was due to start her first radiation at 4:15. Of course the ultrasound place was hugely behind schedule and their computers had crashed. They were having a really bad day. The radiologist came in to check Ashley’s pictures and told me he couldn’t see anything at all that would be causing these cramps. I’m sure that’s good news but it’s so frustrating not having an explanation. No time to ponder and we rushed an hour late to her radiation.

That of course went well. Ashley had eaten by now so was in an ok mood. A little ticked that she’d had a long day but we got through it. So she continues with the cramps, for no reason that we can determine. I’m just hoping they go away soon, and this will have just been a bad week.

I forgot to tell you that on the Friday, I called to find out if Ashley’s biopsy results were in. They have confirmed that it is Neuroblastoma. Why it didn’t show up on her MIBG we don’t know. We really haven’t had a chance to talk to anyone since then, so I don’t even really know how big or anything. I’ll have to try next week to set up a meeting to find out all the ins and outs. The radiologist made it sound tucked in between lots of things again. Ashley does like to grow these in bad places! Well hopefully we’ll know a little more soon.

Ashley, and Ken and I are missing all your wonderful Guest Book Entries. Have we overwhelmed everyone with all the bad news on her journal? We miss all the encouraging words you sent us.

Well that’s it for now. Ashley will now being doing radiation every day for the next three weeks. Hopefully she will remain well through them. So far no repercussions from yesterday. No nausea or anything. Danielle and I are off to Grand Island NY tomorrow for her last dance competition. We’re looking forward to it. We’re taking my sister in-law and Danielle’s cousin, so it should be lots of fun. So to all you mothers out there, HAPPY MOTHERS DAY and I hope you have a great day. If you get a minute watch the Telethon from McMaster on CH TV (Channel 11). There will be lots of kids that Ashley knows and some of the nurses and child life workers. They will be doing it this year right in McMaster when usually it was done in a studio. So they will be showing the children’s wards etc.

So bye for now and wishing you all a great weekend. Remember to spoil all Moms’!! Breakfast in bed, flowers, and dinner made (sounds too good to be true :-))!!

Tuesday, May 07, 2002 at 07:44 AM (CDT)

So let’s try this day-by-day thing again. It seems to work well for now.

Wednesday: I took Ashley off to the Cancer clinic to have her Radiation CT Scan done. It went off without a hitch as usual. Her mould fit beautifully and she got to decorate it. We then went off to see my Mum where she was having her radiation done. I had to warn Ashley that her speech isn’t very good anymore. The radiation has caused swelling to her brain tumor and her speech is very difficult to understand. The lady doing the radiation recognized Ashley as she had done one of her treatments. They were sad she was coming back for more. So we had a quick visit with Grandma and I took her to school. I even managed to go to work for a bit. Danielle had a dance practice after school and then a visit with my Mum. I’m learning the differences between adult cancer now and childhood cancer. They do react differently. Children are blessed with a resilience that most adults unfortunately don’t have.

Thursday: We had an early appointment at the hospital with my Mum’s clinic oncologist. The news we had is unfortunately not good. With the extensiveness of her cancer we really didn’t expect good news. They told us she has anywhere between 3 – 6 months depending on whether she is able to withstand chemo and on the outside 9 months. It’s very difficult writing this as I have said before I would like to keep this web page about Ashley. This sort of news feels almost too private to share, but I know many of you are also praying for my mother as well. Thank you from the bottom of my heart. I feel I should keep you up to date as she gets strength from Ashley. She feels that if Ashley can be strong and endure everything she has, she can certainly do it. So we have been shown how bad experiences can lead to lessons well learned for others. It lifts my heart that my mother has learned such monumental things from such a small and incredibly courageous child.

Ashley was home happily playing with one of our friends so for the first time in a long time, I had time to waste. I really should have gone to work, but decided to hang out with my Mum and Stan. Time seems so precious now. I’m usually sharing my day between Ashley and her, so it was nice to spend a Mum day. She had radiation that afternoon, so I accompanied them there. Not that I was much help. I fell asleep waiting for her to finish her radiation. Oops! :-) I came home and went to bed. It’s catching up with me. I managed to get up long enough to prepare for Danielle’s bright and early day of competition.

Friday: So bright and early it was. We were doing hair by 6:00 am. I know that might not be bright and early for most of you, but for those of you that don’t know me; I’m not a morning person!!! Ashley headed off for a full day at school. She has been often enough in the last month or so that it is normal for her now. No more wanting to stay home with me! We managed to make good time to Kitchener. Our girls did awesome with their tap number. Awarded a High Gold. Their Jazz number was rushed as they were put on earlier than expected but they still managed a Gold. It was a fun day. We ended by going out for lunch with some other mothers and girls. We stopped on the way home and visited Mum. I had warned Danielle about Grandma’s speech, so she handled it very well. Then off to get some groceries. A quiet night at home, other than Ashley woke up in the night with really bad stomach cramps. The same sort of cramps that I took her to emerge with a few weeks back. She finally took some medicine and went back to sleep. Worry, worry. :-(

Saturday: Dance practice for Ashley. The recital is coming soon. We’re so incredibly happy and blessed that Ashley will get to be a part of this as well. Their dance isn’t that long, but it’s so cute. We can’t wait to see the costumes. Many a tear will be shed that day I’m sure. Saturday afternoon I went up to see my Mum and for the first time in quite a while, we had a good visit. She was feeling a little better. Ashley’s cramps came back later in the day and then again at night. Frustrating when you don’t know what to do. They hadn’t found anything wrong with her the last time it happened, so we held off taking her in.

Sunday: A quiet day. Ashley had her friend Brittany over for the day. She had cramps a couple of times through the day but we managed to control the pain with Tylenol. They had fun and it was such a beautiful day!!

Monday: Finally! I wish I had time to post more often. I’m amazed my brain remembers almost a week ago when I try to write this! I really wanted to take Ashley to clinic to have these cramps looked at. I couldn’t manage it. She was due for one more CT scan for radiation and I knew they wanted to start her this week. I tried to reschedule and no go. So seeing as we couldn’t be in two places at once, we will head off to clinic Tuesday. She definitely was not well though. She slept on the way to the cancer clinic and through me carrying her in and waiting for her appt. She had a good 45-minute nap and still managed another nap in the afternoon. She had cramps again just before I left to go and see my Mum. Her medicine worked thank goodness. I sure hope they can give me a good reason for these. So that’s been our week. I’m sure there’s much more info than you all need, but when I do this day by day thing I have to think what we’ve done so I just write it. Pretty soon life will get normal again. Ashley starts her radiation on Wednesday. She has 3 weeks of it again. Unfortunately because it’s her abdomen being radiated, she will probably be sick from it. So we’ll have to see how it all goes. Take care and I’ll try and post soon. Incase you hadn’t noticed I did put a new picture of Ashley in and put back one of her old ones. We’re not taking as many pictures right now, but soon I hope. Bye.

Tuesday, April 30, 2002 at 09:35 PM (CDT)

I’m so sorry this has taken so long to post. Time is getting away from me. Where do I start? It’s still been very busy around here, which seems to have become the norm. I think I will try and just go day by day again as so much seems to happen.

Friday morning we managed to have a very calm preparation for dance competition. It was actually quite nice to take our time. Definitely not a usual thing for this home. The girls did what looked like a flawless performance but unfortunately only placed 3rd. We and many others were quite shocked. As we all said ‘they were gypped’. We thought we were just prejudice, but many other mothers from other studios made the same comment. So we stand firmly that they were gypped! :-) Friday afternoon we managed to take my Aunt and Uncle for a tour through our company. They had seen Ken’s shop many years ago on his Dad’s farm, so this was quite a shock to them. It’s definitely come a long way from there. We then went up to see my Mum, but she was so sound asleep we didn’t have the heart to wake her. We did manage to spend a moment with her Doctor, which made my Aunt and Uncle feel a little better even though they still had no answers from pathology. Her radiation had gone well, but she unfortunately was sick from it.

Friday night I had an unexpected call from one of Ashley’s Doctors. She told me they had good news and bad news and wanted to tell us before the weekend. So here’s the good news. Miracles can happen! Her tumor in her chest is GONE!!! A little hard to believe right? Well they can’t see any evidence or traces of the tumor. So now Ashley doesn’t need to endure a dangerous surgery. Halleluiah!! Now the bad news. They found 2 or 3 lymph nodes behind Ashley’s liver that are very suspicious. They obviously suspect that these are cancerous. She needs to have a needle biopsy to confirm that is has relapsed in her abdomen. If it is confirmed, they will want to radiate, as she was highly receptive to the radiation. This had obviously burst our bubble over the good news. We were hoping and praying that if we could get rid of the chest tumor, because it was nowhere else, that she stood a chance at beating this disease. The fact that it has shown up again elsewhere is obviously not good. We are having our meeting Monday to discuss options etc.

Saturday was a good day. Ashley had her dance class, much too early I might add. Saturday mornings at 9:00 is a drag! We then went and visited my Mum. She’s still not feeling well so we kept our visit short. She was given a pass for a few hours on Sunday. My Aunt and Uncle are going to have a quiet visit with her in her own home. We managed to all go out for supper on Saturday night. The Mandarin. Yummy!!

Sunday was fairly quiet as well. My Aunt and Uncle went for their visit with my Mum. Ashley had a birthday party with a new friend from dance. A nice quiet day to boost us for the week.

Monday we started our day with a meeting with Ashley’s oncologist. They are already arranging for radiation and want to start ASAP. They need to do the needle biopsy before, so everything is going to happen fast. That’s obviously ok with us. He is incredibly pleased with Ashley’s response to the radiation. He thinks Ashley is unique. Well we think so too! So she is due to have a new mould made tomorrow morning in preparation for radiation next week. 11:00 they want her to have another ultrasound and depending on the results from that she is having her biopsy at 2:30. So they came through for us. Obviously the sooner we get on these new spots the better. We had to say goodbye to our Aunt and Uncle and that was sad. It’s so hard when family lives so far away. It was a wonderful visit overall, but I’m sure after the hectic week they’ll be glad to be home. Ashley had a quick dance class before supper and we stayed home for the night. I was beat.

Tuesday, today. What a crazy and long day. Everything went as planned. We had a new mould made for her new treatments. Quickly drove back to Mac for her ultrasound. The radiologist came in and decided that he could get a sample of the new mass so the biopsy was a go. We then had to wait around until 2:30 for that. Bless little Ashley but she patiently waited and barely grumbled about not eating or drinking. I had to promise her she could have what ever she wanted to eat when she was done. Fine by me. One of my girlfriends Linda had come along for company and we also refrained from eating and drinking. It’s hard! Finally she had the biopsy and off to sleep she went. It went well from what we were told, but they wanted to monitor her until 7:00. They had to go through the liver to get the sample, so they wanted to keep an eye on her. Thankfully she slept the whole time. We had to wake her up when it was time to leave. She hadn’t forgotten. She asked for Kentucky Fried Chicken as her reward. She got her KFC! It was almost 24 hours since she had eaten or drank. All’s well and I’m sure we’ll pay dearly for all that sleep. She’s wide-awake watching movies as I write this.

So that’s it so far. I hope to have the results from the biopsy by the end of the week. Tomorrow Ashley and my Mum will both be at the Cancer Clinic at the same time. Ashley needs to have her mould checked and they do a test to see exactly where to radiate. My Mum is going to be there at the same time getting her radiation. It’s sort of sad really that Grandmother and Granddaughter are both there for such bad reasons, but Ashley is excited that she gets to see Grandma. We are having a meeting on Thursday to discuss the next steps for my Mum. They want to start chemo and we need all the ins and outs of that. Danielle has another competition on Friday, so it’s another busy week. So bye for now and if I hear anything in the next few days I’ll try and keep you all up to date.

Thursday, April 25, 2002 at 06:55 PM (CDT)

This journal entry will be a bit different. As you all know it’s a busy week, and to try and remember everything that goes on I’m going to keep a running journal and post it all at once.

Monday: Ashley had her ultrasound and it went off without a hitch as usual. We went upstairs to have her echo done and again all went well. Next was her ECG and the poor thing still hadn’t had time to eat as we had bounced around from one to the next. She did the test but was anxious for her lunch. We found out Rebecca was in clinic and she hasn’t seen her in ages so we went to visit her supposedly for a minute. Well almost an hour later… :-). My Aunt and I went and got her lunch and she and Rebecca ate together. Austin came in as well and of course Ashley asked where her present was. She’s certainly not shy when it comes to that as you will all remember from her open house. If she doesn’t get one the first time she sees you, she will certainly remind to bring one the next time. Finally we took her to school for the few hours that were left. My mother’s biopsy took longer than we expected so we didn’t see her until nighttime. She was thankfully not in any pain and all seemed to go well.

Tuesday: Off we went to clinic and I actually forgot for the first time in 3 years that she needed a finger poke before going up. They were busy but managed to get her hooked up and took blood to have her counts checked seeing as I had forgotten. They forgave me :-). They also had to have a resident check her out as she has had a stuffed up nose but of course woke up coughing. Lungs were clear so we were a go for her Bone Marrow Biopsy. It was a long day. She wasn’t allowed to eat or drink as she was being sedated, but not a grumble. She was convincing the girls on the ward that when she was done she wanted certain things waiting for her. And she thinks she’s shy????? She didn’t go in until almost 1:00, so she did very well with having to wait. She’s only ever had this done I think twice before. Once on original diagnosis and then at relapse. But she handled it like a pro. She actually called out to her nurse and said, “are you ready yet?” and proceeded to run in and jump onto the bed. She helped with her vitals and not knowing her sleepy medicine was in, laid down and dropped off to sleep. They had trouble with her biopsy on one side of her hip. They said her bone was fairly soft. They told me she would probably be quite sore on that side when she woke up. Well true to Ashley, she’s fighting to wake up. She couldn’t even focus and was shaking her head to get rid of the dizzy feeling. Pointed to the toy box and slurred what I recognized as she wanted her prize. Trying to pick her prize while still quite out of it was quite funny. If it had been a pie she would have been wearing it. She managed to finally sit up and then proceeded to start pulling off the bandages they had put on. Screaming in pain and crying but still pulling, she managed to get them off so they could replace them with the little tiny band-aids. What a trooper. Thinking she had forgotten about being hungry, I didn’t remind her. Well as usual she forgets nothing. Down to the cafeteria we went to get the sandwich I had promised her.

We dropped her off at home and had to go straight to see my Mum. She had been told she’s having radiation. Reality is setting in, but she’s being incredibly strong too. More blessing in their own way. Off to dance after that to pickup Danielle. Finally home and Ashley is back to normal. Refusing pain medication even though her back was sore. I finally did manage to convince her and she proceeded to bounce around until 10:30pm. I was more tired than she was!!

Wednesday: What a long day. We were at the hospital by 8:30am for her bone scan injection. 9:30 was her hearing test. She loves doing that test and was disappointed it was over so soon. She has very minimal hearing loss with very high decibels. Things like a high whistle of a kettle etc. We know it could be much worse so are very thankful. Her injection that she had needs two hours so we were due back at 11:00 for the scan itself. So with time to kill we hit the playroom. She immediately made a friend and had a good time. Paint all over her, but oh well she had fun. After her bone scan we had to wait for her CT scan, which wasn’t until 12:45. No eating or drinking through any of this, which was a huge drag with so much time to kill. Then they informed me they were behind schedule. Huge drag! I was exhausted and Ashley was getting grumpy. We were finally out by 2:00. Home to see the VON nurse and get her bandage changed. Dance with Danielle after that and off to the hospital to visit Mum. Do you remember me way back yonder saying more hours in a day would be good????? :-)

Thursday: No tests today. Ashley stayed home and hung around with my Uncle. I haven’t even had time to ask him how he fared. I’m sure she kept him busy! Danielle had her competition this morning. 2:00 this morning I realized we seem to find any way to complicate our lives. She had left her shoes at her dance studio. We needed to be in Brantford dressed, hair and makeup by 8:45. Now we needed to wake up the owner and have her meet us to get her shoes!! What a way to start our day. It was all worth it. Her group got a first again!! Tomorrow she does her other dance so we have to do this all over again. This time we have shoes! After the competition I raced home to meet my mother at Hamilton’s Cancer Clinic. She had all her scans in preparation for her radiation. She starts radiation tomorrow.

Well Ashley has her last test tomorrow morning but we won’t find out her results until Monday morning. I was hoping we could pull off the results by tomorrow afternoon, but I knew I was pushing it. If anyone gets the Flamborough Review Ashley’s picture is on the front page from her Open House. They will be doing a story on her later after we find out her results. I’ll let you know when that goes in. Well take care and I’ll post soon.

Sunday, April 21, 2002 at 10:13 PM (CDT)

Well it’s been a fairly busy week for us. Ashley has been having fun doing all her normal things. School etc. Thursday she went to clinic and of course all is well. Her numbers are all great which we expected. She was too cute. She took in her new glamour shoes and purse so she could be a proper lady while she was there. Her new little friend Austin who is battling the same cancer left her a present. A package of gum. She was thoroughly enjoying that as she is only allowed that once in a while.

We went to visit my mother on Tuesday in the hospital and Ashley settled right in. Took over her bed to play with the dolls she’d brought. Had my poor mother trying to dress them. I’m sure she was glad to see the back of us when we left. My mother has remained fairly well this week. She had a bad night and day Thursday and Friday. She thought she was having another seizure and was really the worse we’ve seen her yet, but we were assured she hadn’t had one. We were told it was the excitement and worry of her brother’s visit. They arrived safe and sound on Friday and have settled in nicely. My mother is obviously very pleased to see them and we’re trying to visit as often as we can.

This week is going to prove very very busy. My Mum is having her biopsy tomorrow morning. Ashley is also due for all her tests this week. Tomorrow morning she has an Ultrasound and then an Echo. She then has an extra dance practice later in the day. Tuesday she is being sedated and having a Bone Marrow test to make sure her bones are still clear. Wednesday she has her CT Scan and Bone Scan and on Friday is her MIBG which lights up any active tumor. In between all that Danielle has dance practice Tuesday and Wed. and is in a competition on Thursday morning and Friday morning. So my Aunt and Uncle wanted to come and experience some of Ashley and the kid’s lives. Boy did they come in a good week. They’ll be glad to go home for a rest when all is said and done.

So obviously this week will be busy but also emotional. We will be getting all the final results on my Mum and whatever plans will come her way. We will also hopefully by the end of the week know how Ashley has fully responded to radiation and what the next steps are for her.

So I will try and let you know if I hear any results sooner than the end of the week. Friday will actually prove difficult and I need to speak to the doctors on how to set up a time later in the day for our plan of action. Danielle’s competition is at 10:00 am and she won’t be finished until approx. noon so I won’t be able to make it back to their normal clinic hours. Obviously we will be anxious for the results and I’m hoping we won’t have to wait until Monday.

I think I forgot to mention that Danielle had a competition last Monday. Her first one and we were so proud of the girls. They have a Jazz number and a Tap number. This is Danielle’s first year in Tap. They got a first on both numbers!!!! It was so encouraging for the girls that all their hard work had paid off. We’re hoping they will do well again this week. She has a competition in the States I think the second weekend in May. She’s really excited about that one. We get to stay over just her and I. I’m looking forward to some quality time with her. The kids so rarely get one on one attention.

Well I’ll sign off now, and I just want to say thank you for the extra prayers. We have continually been shown God’s grace through the support, love and prayers of everyone. Thank you to everyone.

Bye for now.

Sunday, April 14, 2002 at 09:27 PM (CDT)

Well since I last wrote, our life has been anything but uneventful. Ashley is still doing well. She is going to school like a normal 5 year old. She has discovered she loves to play Nintendo and spends a lot of her time playing that. It keeps her out of the fridge, so it’s been a rather good thing. Her appetite seems to be all back to normal now that she is off the medication. Some of the swelling has come down now, so the chipmunk cheeks are much better. She went to dance on Saturday and was measured for her costume for the year-end recital. I am so hoping she gets to be a part of that. It would be another one of those milestones we so crave.

Well I must branch off of the subject of Ashley. I know this web site was created to keep you all up to date on Ashley, but I feel I must let you know other important things that happen in our life. As some of you already know through church and our group of immediate friends, I had some very bad news happen this week. My mother was rushed to emergency on Thursday night with what we and the doctor’s thought was a stroke. We were quite shocked when a few hours later after some tests we were told her lungs were quite extensively full of cancer. My mother has a heart condition and we almost lost her just before Ashley was diagnosed almost 3 years ago, so this was a complete shock to us. We always expected that if anything was to happen it would probably be her heart. This has obviously been quite a difficult time for her as well as our families. They did more tests the following day, and discovered that she hadn’t had a stroke but a seizure. They found a tumor in her brain, which caused the seizure and gave symptoms that a stroke can. So the news has only gotten worse not better. She is in no pain thank goodness and amazingly enough her heart has remained stable throughout her ordeal so far. She will be in hospital until they can fully diagnosis her as they still aren’t a 100 % sure if there isn’t another primary tumor elsewhere in her body.

You have all been so amazing with your prayers for Ashley, but I am hoping you can maybe say a few for my mother. We are hoping within the next few days to know more answers and I will try and keep you posted. I am fortunately able to concentrate my time on my mother right now, as Ashley’s scans are still almost 2 weeks away. The month of May will bring many new things to our lives I’m sure. I am hoping my mother will remain in reasonable enough condition that we will be able to swing back to Ashley for whatever they plan for her. It’s so hard waiting and not knowing, but as I said earlier she seems extremely well and I have no worries about her health right now, which helps.

My Aunt and Uncle had already planned to visit us from England this Friday. The timing couldn’t have been any better. Their plans were to come and spend time with the families, as they have never met Ashley or Nathan. They never expected their visit to be as important as it will be. We are very much looking forward to seeing them, and I know it will be very heartwarming for my mother to spend time with her brother. They don’t get to see each other often with my mother having a heart condition and not able to fly. The last time they were here was at our wedding. They had flown in on Thursday and were leaving on the following Monday. So it was meant to be a short visit anyway, but my Aunt got pneumonia so bad she was bed ridden and wasn’t even able to make it to our wedding. She was very sick, and to this day I’m not sure how she flew home on the Monday. I was hoping this would be a more memorable visit, but hopefully we will have some good days with the bad.

Well I’m surprised I wrote this much. I was going to keep it short and sweet, but just like when I talk, I obviously write just as much as I talk. :-)

Bye for now, and thanking you in advance for those extra prayers.

Wednesday, April 10, 2002 at 07:18 AM (CDT)

Well it was a great weekend. First off I’d like to thank everyone who came to our open house. Ashley had a great time and it was a lot of fun. It was so nice to see so many people. We need to say a very special thank you for all my helpers in keeping it running smooth, especially Marnie Hood, Sarah’s mother from Ashley’s kindergarten class. You were fantastic help Marnie, thank you!! I've posted new pictures. You’ll probably wonder if you weren’t there what is on Ashley’s head. She had some tattoos given to her, and she thought it would be a good idea to tattoo her head!

Just to jump back to Friday for a minute, I should let you know I had a phone call from one of Ashley’s oncologists. The tumor board has decided they want to wait until the end of the month to do Ashley’s scans. Radiation works for approx. 4 – 6 weeks after the treatments are finished. They are concerned if we do the scans too early, that there could be a change that we wouldn’t know about. If we presented the scans to the surgeons too early they may say no depending on what’s left, when in reality a few weeks later it could have changed. It was very difficult to say ok to this, but we have to trust their judgment. I made them promise they would have copies of the scans sent immediately to the surgeons. We are very worried that Toronto may take too long to make up their minds again and we find ourselves in the same situation as last time. Pouring unnecessary chemo into her. They have promised that the surgeon’s will make their decision immediately. So we are rebooked for the 24th and 25th of April. This leaves almost the whole month of April to be a relatively normal household.

Saturday was a most enjoyable day. The kids were up until almost 1:30 new time. So we all slept in the next day. The kids had a Camp Trillium outing on Sunday. So they were gone doing crafts etc. for a few hours. It was a nice break after such a busy week. It was also Ken’s birthday on Sunday. We celebrated on Saturday night with our friends so Sunday was quiet with no visitors.

I thought Ashley would be in school all three days this week, but she woke up at around 4:00 am coughing away. She started coughing yesterday sometime, but it irritated her through the night. I decided she should stay home. So hopefully by Wednesday she will be better enough to go to school.

A lady from the Review came to Ashley’s birthday party. She took pictures of her with the balloons they had given her and the huge birthday card from the school. I’ll let you know when they put it in the paper. I think they want to do a story on her, but we’re not sure yet if we’re ready for that. We’ll see.

Well it should be a fairly quiet month. We’re all done with birthdays. Now starts all of Danielle’s competitions, so weekends will start being busy. Her first one is actually on a Monday the 15th of April. She’s disappointed because she thought she would be off school, but the school is closed for grades K-3. Poor Derek is the only one who’s going to have to go. I can just imagine how he’s going to feel about that!!

Well other than a visit to clinic this week it should be fairly uneventful. I’ll let you know if anything changes again. These are the third set of dates for her scans. I’m sure the girls booking them are getting confused. I know our day timer’s a mess! Hopefully all stays on schedule now. If Toronto turns her down for surgery again, I’m hoping there’s going to be enough time to send a copy to NY for a second opinion. They have held off making any decisions after they found out about the response from her radiation treatments.

Thanks again for everyone we were able to visit with on Saturday!! It was certainly an awesome way to celebrate another year of life with Ashley.

I didn’t get to post this on Monday night. So much for uneventful. I ended up taking Ashley to Emergency on Monday night. Turned out to be nothing, but she had stomach cramps so bad it had her in tears and writhing in pain. She obviously doesn’t come to tears often so I knew the pain was bad enough I needed to get it checked. The radiation treatments of course could cause damage in her body, but all is well thank goodness. It was a late night, even with the oncologist preparing the way for us. We didn’t get home until 2:30 am, but she slept until almost 11:00 in the morning.

Now I’ll say goodbye. I guess I shouldn’t say it should be uneventful anymore. Who knows with our lives!!

Bye for now.

Thursday, April 04, 2002 at 10:04 PM (CST)

Today is Ashley’s birthday and I thought I’d just post a quick note how the last few days have been. Tuesday we managed to get a bit of shopping done. I know I spend much less money when she’s not with me! It wasn’t very nice driving on Tuesday with all the snow. What a drag!! I wish winter would just go away. She had her radiation appt. at lunchtime and was impatiently waiting to be done so I could feed her! The rest of the day was uneventful.

Yesterday she went to school and I managed to do quite a bit of shopping for the weekend. She was spoiled at school. The WHOLE school signed a great big Birthday Card for her!! It is just awesome. Each class had a whole huge page. It was certainly the biggest card I have ever seen. They had balloons around her door. She took treats in for the kids to share (candy). I’m sure the teacher loved me for that. The principal dropped off the balloons at the end of the day so we could hang them up here. We rushed from school to her LAST radiation appt. Thank goodness it was her last one. The mould is barely fitting again! They had a little graduation for her there. She had a grad hat and a certificate given to her. They put her picture on the graduation board and then gave her a gift certificate for Toy’s R Us. That was incredibly nice of them. A very nice way to end her radiation treatments.

We rushed home to see her VON nurse, and it was good thing she came today. Ashley’s bandage was hanging right off. I’m not sure why, but a good thing we changed it! She actually co-operated going to bed for once. I think this is the first time she was in bed before 9:00 in forever. We told her she had to go to sleep so we could wrap her presents and hang her decorations.

Her birthday party was great! She waited very impatiently for 11:30 to come. Finally all the girls showed up and she was in her glory. She loved all her presents, but couldn’t wait to eat lunch. Shortly after lunch the girls doing her princess party came in. For the next hour and a half they tried on tons of cloths and had makeup and nail polish put on. Most of them had their hair done as well. They were so good though. I would have never known there were 15 little 5 year olds in here! The Piñata was a little difficult though. Ken had to do a little surgery to help make it easier to break. I’m sure all the mothers really loved me too for all the candy that went home. Sorry Moms!!!

Well tonight all the family is coming over and tomorrow Ashley can go to school for the whole day. I’m so excited. I just realized yesterday that next week will be a total normal week for us. We have no clinic, radiation or anything going on. So hopefully she will go to school for 3 days and I can go to work. Yahoo! All her tests are booked for the following 2 weeks, so we’ll get busy again.

Well just a reminder of the details for Saturday. The Open House is from 3:00 until whenever. Looking forward to seeing some of you there. For anyone who can’t make it, this is a day for us to say thank you for all the support you have given us, so THANK YOU VERY MUCH from the bottom of our hearts!!!

Love Tricia, Ken, Ashley and the rest of the gang!

Tuesday, April 02, 2002 at 10:04 AM (CST)

Time certainly does fly. I can’t believe it’s a new week already. Our trip to the clinic last week was uneventful. Her numbers are still holding strong. We had to wait a long time to see the doctor but it was worth it. It’s not very often that you have a doctor sit and spend as much time as you need with them. They are all so understandably busy but this doctor relaxes and doesn’t make you feel rushed. It’s a treat to talk to him. We were actually able to spend some time discussing the what if’s. Discussion about Ashley’s future has obviously not been discussed in a while. So it was nice to look a little in the future. Her scans were all booked for the week of April 22nd. When I voiced my concern that by the time we had the results and made our next plans that too much time would have gone by he agreed. They have all been moved up to the week of the 15th. That way if surgery is needed and becomes an option again, we can hopefully be on top of the situation before the tumor starts to grow again. So many what if’s. We will be looking forward to all those results!

Some other discussions were if we able to remove what’s left (if anything by then), what would be the next step. There’s a new pill called Fentritinide that I believe can try and keep Neuroblastoma cells at bay but I need to do more research on this. Right now it only comes in pill form and I think she would need about 20 or so a day. The doctors hoping that by the time she may need them they will have been able to produce an oral form. We’ll have to look into all this later as so much is up in the air right now.

Well last week was busy, fun and relaxing all at the same time. We managed to have a quiet Easter. Ken’s dad was having an Auction to close down his farm so Easter gatherings were skipped this year. It was a difficult day for them, watching years of equipment sold off. We’re hoping this will be a fresh start for them. It’s time to relax and enjoy life, as they have both been so busy with the farm for so many years.

My sister in-law Kathy and friend Karen came up with an awesome idea. At the auction they needed to provide coffee and hamburgers and hotdogs for all the people. They decided that all the profit should go to a good charity. Well they picked Help a Child Smile! They managed to raise $750 yesterday at the auction. What a super job they did!!!

Well this week is going to be very busy. As usual I leave everything until the last minute. I have to go and get everything for Ashley’s birthday party on Thursday. She’s on a count down. 2 sleeps to go! Then of course planning for Saturday. It will be a fun week and we’re looking forward to seeing you there.

Well Ashley has just 2 more radiation appointments. Today and tomorrow. Yippee!! I have started weaning her off of her medication. Hopefully soon she’ll lose some of the swelling and we can try and get her eating habits under control again. One thing for sure, she’s certainly not looking undernourished! It wasn’t that many weeks ago I wrote she was losing so much weight. Such extreme changes in such a small amount of time.

Well I’d better be off to start all our shopping. Bye for now, and incase I don’t post again this week, see you soon!

Wednesday, March 27, 2002 at 09:56 PM (CST)

Well we finally have some good news to write about. We have been incredibly blessed with a great response with radiation. Ashley’s tumor has ‘considerably’ shrunk!!!! We don’t know the exact measurement at this point. They are going to do 3 extra doses of radiation just concentrating on what’s left and we will have to see how responsive that will be. Her radiation will end the day before her birthday. What an incredible birthday gift!!! We are obviously overjoyed, but of course with this disease the battle is far from over. We have taken this right now and run with it. Ashley is due into clinic tomorrow and we will discuss the ‘what ifs’ with them then. If it’s all gone when she’s done radiation, how do we try and keep it gone? If it’s not all gone is surgery now an option etc. Still so many questions and so many that they’ll have a hard time answering with a relapse patient.

So all is well right now. Ashley is gaining weight fast and furious. The radiation scare I had about her mould was for nothing. Everything was fine. They just needed the doctor to check everything. A comment from our VON nurse made me feel better about her breathing. She’s gained so much weight it’s probably putting more pressure on everything. Poor thing!! Food is such a major part of her life right now. Ken scooped her out of bed this morning to take her for her 7:00am radiation and instead of being sleepy and saying where am I going or but I don’t want to go, she immediately upon waking up says ‘but Dad I need to take a sandwich with me, I’m starved!!!’. Her next CT scan isn’t until April 22 and it’s not until 1:00 in the afternoon. She’s not supposed to eat or drink before her scan. I’m going to have to go and beg on my hands and knees for an earlier appointment. There’s absolutely NO WAY she will go that long without food.

Well we have certainly been shown the power of prayer from Ashley’s results. We took Ashley to a prayer service in Hamilton a few weeks back. There were Healing Ministers present and one came up to me before the service. This woman hadn’t even had the chance to see Ashley with me as she had just come out of a closed prayer room. We knew not a soul there, and she touched my arm and said ‘tonight is a new start for the rest of your lives for you and your daughter’. Well obviously I burst into tears. Ashley was nowhere near me when she said this. They prayed heavily over Ashley that night. It was a very emotional evening and we definitely felt the presence of the Lord.

Well it’s off to clinic tomorrow. If they tell me anything important I’ll post soon. Ashley has managed to go to school 2 days this week. Monday was her class trip to Pizza Hut. If you read the guest book you’ll see one of the mom’s said Ashley was eating up all the pizza. Typical :-)

Well our open house will be even more of a celebration. Thank you to all the people who are offering to help. I still haven’t done a lot of planning for it, but we’ll have fun anyway.

Bye for now!! :-)

Sunday, March 24, 2002 at 10:36 PM (CST)

Well I thought I would have more news to tell you from this week, but it has again been fairly quiet and ‘normal’ as these few weeks have become.

Ashley has been getting her radiation everyday and everything has been going extremely well, up until Friday when some complications arised. When they made her mould she had lost a fair amount of weight. With the hospital providing supplements and then putting her on the medication that makes her a hungry hippo she has now outgrown her mould. We have slowly been having difficulty attaching the mould to her x-ray bed but on Friday it wouldn’t fit at all. They had to have a pile of technicians come in and check it out and they took the mould to see what they could do. Whatever they did worked and it fit for the treatment, but they called me later to say they had had problems with it. I’m still not sure what kind of problems, only that her radiation treatment for tomorrow has to be delayed until later in the day while they work it out. I guess I’ll find out tomorrow. I’m really hoping they haven’t radiated something they shouldn’t have.

New York only partly responded this week. They did receive Ashley’s information, but didn’t see the paperwork that was attached to the envelope of the CT scans. So thinking they were missing a lot of pertinent information they tried to reach me before showing the Doctor. I’ve been told they will call me tomorrow or the next day. We will have new scans from this week to show them. The Doctor at the Cancer Clinic has decided he wants to do a CT scan even though she’s not quite done her treatment. The tumor could be swollen from the radiation but he’s hoping he will be able to see if there has been any response and depending on that may give her a few more treatments. The results will be distorted, but obviously we’re feeling quite anxious.

She has otherwise had a good week. She was able to go to school on Wednesday. It was Pajama day at school and she had a great time. She called at lunchtime just to see when I was coming and to try and tell me she felt ‘sick’ :-). She wasn’t upset or anything so we managed to keep her there until it was time for radiation. Thursday she had a great morning. One of my girlfriends took her so I could go to work and Ashley took her shopping. I’m sure you can imagine where they went first. The grocery store.:-) They managed to do some damage there, hit the dollar store and visit McDonalds in a very short time. She was in her glory.

Friday was her one and only visit to clinic and it was short and sweet. Her numbers are awesome, so the radiation is obviously not affecting them. We even managed to do lunch with her friend Austin. Saturday she had a busy day. She went to dance class for the first time in forever. We had bought her a new dance outfit and she looked great. She even managed to stay in for the whole class, which I was surprised at. She has been breathing funny lately. Almost like a shortness of breath, which of course is weighing heavily on our thoughts. Tuesday can’t come quick enough. Anyway she had a great time and then we had to go buy her a gift for a birthday party she went too in the afternoon.

Today she had another good day. We had promised to go to another Church where some of our friends and family go. They have been praying for Ashley and we really wanted to meet the Pastor and his wife. Very special people. We can’t thank them and everyone enough for those prayers. I’m sure I’ll say that over and over but we are so very thankful for the support. She brought home her friend Brittany and they had a great play day. So all in all it’s been as I said a fairly uneventful week. I even managed to go to work for a few hours. That’s definitely been a while. This week I have to go in as much as possible, so hopefully all will go as planned. Ashley is going to school tomorrow and is excited. Their class is going on a trip to Pizza Hut. They tried to reschedule her radiation for when she would be on her trip but I managed to delay it until later.

Well I promise not to wait so long to post this week. I’m sure you’ll all be as anxious as we will be for the results on Tuesday. So I will write soon.

Oh ya, Ashley’s open house is for sure April 6th. Anytime after 3:00 is great. Just park anywhere either in the driveway or on the sidewalks. The gas station across the road probably will have room as well as it’s never open anymore. If anyone needs directions just e-mail us. Our e-mail address is on the bottom of the opening page. Oh another thing, please just bring yourselves. As I’m sure many of you may be tempted to bring her a birthday gift, as much as we appreciate the thought, this would be hard on our other children and that isn’t why we’re having the open house. Her birthday has given us the opportunity to celebrate her life with everyone.

Looking forward to seeing you all so we can say thank you in person.

Bye for now.

Sunday, March 17, 2002 at 09:06 PM (CST)

Well it’s been a busy week. Ashley had clinic 3 mornings this week and radiation everyday except Wednesday. We think she caught the flu and was too sick for radiation the one day. Her platelets up until Friday were just holding over the 50 mark, which meant no transfusions. By Friday they were back up over 90. So we have almost a week off without clinic. Just radiation everyday.

It was busy with the kids as well. As I’m sure you all relate, they wanted friends over or to go somewhere everyday! Tuesday we took them to see the new Peter Pan movie. Thursday night was Disney on Ice. That was great fun. Ashley unfortunately spent a lot of it in the bathroom, as she still wasn’t well. My mother cancelled at the last minute so Ashley got to bring her friend Brittany. It was nice they got to see it together.

Well other than jumping from hospitals all week, it was a fairly uneventful week. I managed to stick my fingers into something the hospital would have done. I had asked the hospital to look into a second surgical consult with that doctor in NY. Through a misunderstanding with one of the doctors after we found out Ashley’s tumor had doubled, they thought we had changed our mind. I had told them even with the growth, we would feel better just getting his opinion. So because of that they didn’t send off the referral so I contacted NY myself. They were great and told me what I needed to send and they would contact me as soon as they received the paperwork. Normally paperwork can take a week or so but I somehow managed to get copies of paperwork in less than a day. Ashley’s copies of her latest CT scans were more of a challenge as the originals had just been sent to the Cancer Clinic. They were super and when they received them, made copies for me right away. So the paperwork is being couriered tomorrow. Sending the paperwork now with the growth almost seems senseless, but my theory is this. If the radiation is successful and surgery becomes an option again, we would like this doctor to already be aware of Ashley and have his input. I will send him copies of her next scans in April. I’m hoping that if surgery is an option again, we’ll be more on the ball this time and not have to pour chemo into her to hold her ‘at bay’. That didn’t work last time and we really don’t want to take that chance again. Ashley’s clinic nurse laughed when I told her I had been up to no good. She told me she wasn’t surprised. I guess she knows me too well. The doctor that was supposed to send the referral and had been misinformed helped me sort out all my paperwork, so they were all very supportive. I may hear something this week from NY so I’ll let you know what they say.

Well we even managed to have a surprise birthday party for my sister in-law. It was great fun having most of our friends over again. It’s been a while.

Well I’m hoping to send Ashley to school tomorrow. I wasn’t going to send Ashley to school this week incase she got sick, but seeing as we’ve all managed to get the flu anyway, and the hospitals been full of it we’re going to try. Ashley’s teacher came for a visit on Tuesday morning. That was so sweet of her. I guess the kids in her class are anxious to see her. They almost came to the house on a bus the Friday after we came home just so they could see her. That’s pretty awesome. Unfortunately we had clinic and she needed a platelet transfusion so it didn’t work out. The girls in her class will be pleased. Ashley’s birthday is April 4th and she’s having all 13 girls come from her class. Should be fun. It’s going to be a princess party!! So she’s taking all the invitations tomorrow to school.

On that note of Ashley’s birthday we’re thinking of having an open house on April 6th. We’re hoping all our friends, family, hospital friends, church family and anyone else who would like to come. We’d like to celebrate Ashley’s birthday with all who know and love and pray for her. It will be our way of saying thank you to everyone. I’ll post later all the details as I haven’t had too much time to plan it. So keep the afternoon or evening free.

By the way, I’m posting some new pictures from our trip. Check them out!

Well bye for now, and for all you mothers, isn’t tomorrow going to be great!! :-)

Monday, March 11, 2002 at 12:56 PM (CST)

I’m sorry it’s been so long since our last entry. I’m trying to remember now what we’ve all been up to. Last week we were in the hospital until Wednesday. Monday was fairly uneventful. Tuesday Ashley started her first radiation treatment. She has been made one of Ontario’s main priorities, which is comforting. Her radiation treatments are completely painless and not very time consuming. She just lies on the table as if she’s having a normal x-ray. Start to finish is only about 15 minutes. Her platelets need to be above 40, so she’s had some rush transfusions.

Her appetite was returning but in very small quantities. She craved lots of things, but with the minimal portions we still had to wait to bring her home. By Wednesday we took her off all her IV’s, including the TPN, which was all her nutrients. She was asking for mashed potatoes for breakfast (which they hunted down for her :-)). So we took her home in the afternoon just to give it a try. Knowing that it wasn’t her own appetite that was the problem, but where the tumor was pressing made it a bit scarier bringing her home. The first 16 hours or so she didn’t do very well and I thought we’d have to take her in to be hydrated, but shortly after returning from Thursday’s radiation treatment her appetite kicked back in. Yahoo!!! She’s been put on a medication that helps keep the internal swelling down, but increases her appetite. Well it’s really working now. We’ve gone from a child who won’t eat to one that won’t stop eating. She’s now a bottomless pit! Another side affect from this medication is hyperness. She hasn’t really been hyper, but she’s very difficult to entertain. She is bored with things within minutes, and constantly wants to ‘do things’. We’ve run out of ‘things’ to do! She looks healthy again and is her usual chipper self.

Well I really don’t have much else to tell you. She’s scheduled for 16 radiation treatments. Weekends off, so we should be done near the end of March. She’s just having the radiation now with no chemo, so because it’s done as an outpatient we’re home for the month. We don’t even feel like we’ve had the vacation anymore. More than two weeks in the hospital took that away. We sure are glad to be home and back at normal routines. Too bad we’re out just in time for March break! Ashley needs to go to clinic a little more often so we can keep an eye on her platelets and with radiation everyday it’s a little complicated with the kids off school. Well Monday will come soon enough (I hope!! :-))

Plans right now are wait and see how the tumor responds to radiation. We’ve been told that Ashley’s cancer is fairly receptive to radiation. She’s never had it before which is also a plus. We will of course remain hopeful that it will do a fabulous job and shrink it. If our prayers are answered it will totally get rid of it! Future treatment will depend on the tumors response. So we wait and see.

Help a Child Smile has given the families tickets to Disney on Ice for this week. We’re looking forward to that. I’ll keep you posted, and try not to take so long next time.

Bye for now!

Sunday, March 03, 2002 at 10:48 PM (CST)

Well it’s been a rough week. We’re still in the hospital. She is eating some now but still not enough to bring her home. She is fairly settled in her room and doesn’t complain. She was neutropenic again by Thursday so is room bound again. She’s only seen the outside of her room twice I think since she was admitted 2 weeks ago.

Where to start. First I had mentioned that the doctors had thrown something at us that made us feel like ping pong balls. Well we were batted around a few times this week. On the Monday the doctor told us that Toronto’s tumor board had definitely determined Ashley’s surgery too life threatening. Well we already knew that. What they suggested next floored us a bit. Toronto had suggested doing another needle biopsy to see if Ashley’s tumor had changed to something called Ganglioneuroma. It is possible for Neuroblastoma cells to mature into this, which would be a good thing. It would mean breathing room for treatment first off. Everything I could pull up about it showed the only treatment necessary was surgery. Which we were told wasn’t possible. The doctor e-mailed back to Toronto requesting that they perform the biopsy as we had had an unsuccessful one in August. Meanwhile we were busy taking Ashley to the Cancer Clinic next to Henderson preparing her for radiation. They had the mould ready in 24 hours and she had a CT scan on Wednesday to measure exactly where they needed to direct the radiation.

Thursday the doctor came to see us again to inform us that Toronto had said no to the needle biopsy because of the difficulty of the location. They had suggested an open biopsy (surgical). We were amazed that the doctors felt so strongly that the tumor had changed that they were prepared to put her through that just for a piece of it. We were obviously very leery to open her up unless it was to take it all. We have asked for a 2nd surgical consult from a doctor in NY. He is highly recommended and has successfully removed many a complicated Neuroblastoma tumor. He is also a firm believer that his successful surgeries are through God’s hands. A definite plus. The second part of our discussion with the doctor wasn’t so good. The CT scan that she had for radiation showed that it might have grown. They perform a different CT than our hospital so the doctor scheduled another CT at Mac for the next day. If the tumor has grown we would know that it hasn’t changed to Ganglio and it wouldn’t require a biopsy. Boy were we confused, hopeful and so many other emotions that I think we were kind of numb.

Friday we had the CT scan. Poor Ashley. Here we are telling her we can’t go home until she starts eating and because of the test she wasn’t allowed to eat. The test wasn’t until 3:00. She was actually hungry and we had to tell her no. Go figure!! Finally the test was done and she was able to eat.

Saturday was our bad day. We’ve taken a new road in Ashley’s relapse that we have so far been fairly fortunate not to have taken. Her CT scan has showed that her tumor has more than doubled in size. Her tumor has now turned aggressive. The last two chemos have obviously done nothing. It’s fairly unfortunate she even had them. We’ve only had to do them because of the delay in Toronto deciding what they were going to do and after saying no we then had to give her another while they prepared her for radiation. I think we’re feeling a little frustrated that she may not have doubled in size if we had had our answers that much sooner. Don’t worry we’re not blaming anyone as the doctors are doing the best they can. I think we’re just feeling scared silly and frustrated that we’ve waited so long.

On Saturday morning no more than ½ hour after given this news she spit up some blood. This is obviously not good. When I showed the doctor he just said that it’s because of the tumor growth. It now may explain why she hasn’t been hungry. We still need this confirmed but the tumor is probably putting more pressure on her esophagus and eating just doesn’t feel right. She’s not complaining or in any discomfort. She spit up twice more before the end of Saturday night. They transfused her with more platelets just incase it got any worse in the night. Her numbers were fairly low so they wouldn’t have withstood a big bleed.

Today was a fairly good day. No more spit up’s. She was put on a clear diet, which didn’t impress her. She wants food now. Not in large quantities, but she wanted it nonetheless. We had to tell her no unless it was clear jello or gingerale. That didn’t go over so well. By the end of the day, we were allowed to feed her soft foods, which weren’t dark in color. She’s not totally thrilled, but managing.

So needless to say we’re not in the greatest of spirits right now. Ashley thank goodness is fairly oblivious to it all. She just wants to play and have fun. Hiding our tears and fears from her is hard, but she gets sad when we’re sad so we have to be strong for her. They aren’t in any hurry to send us home with these new complications. We know they want to start her immediately on the radiation to hopefully shrink it again, but we’re unsure what her numbers have to be for that. We’ll find that out tomorrow hopefully.

Sorry this was such a long post. I could have daily posted with everything that was changing day by day, but it was changing so drastically that we couldn’t keep up with it let alone trying to expect you all to. Please continue to pray for Ashley. We’re hoping that we get to come home soon but obviously not in any hurry with everything going on.

Bye for now and I’ll try and post sooner with any new news.

Tuesday, February 26, 2002 at 11:52 PM (CST)

Just a quick note to let you know that Ashley’s still in the hospital. She has really been unwell, which we are just not used to. She is still not eating. When the fevers stopped, we were looking forward to her getting back to her old self. No such luck. She has been fairly quiet and very cuddly. She comes to tears very easily. Emotional tears like when the men won the Gold Medal, she said, “Mom are they crying?” and had a few tears herself. Watching a Barney movie (an adventure one) she was teary at the end. They’re killer tears let me tell you. If a Barney movie can move her to tears, we know she’s very sensitive right now.

Yesterday was fairly quiet. She just played and then napped later in the day. We met with the radiation therapist and he was very nice. They want to start the radiation as soon as her numbers have recovered enough. She had to go to the Cancer Clinic next to Henderson Hospital this morning. Bright and early. Ken and Ashley took a taxi that the hospital provided to be there by 8:30am. They needed to make a mold of her upper chest, for when she goes for radiation. It holds her in place for the two-minute beam of radiation. It was just like having a cast done, and it went well.

She is so totally not are upbeat Ashley. She slept when she came back until 11:30 and then woke up sick. They gave her gravol and she went to sleep again less than an hour later and slept most of the afternoon. We managed to play in the playroom for a while tonight, but she’s still not eating. She’s lost weight. Enough that her pants are now loose. They started her on something called TPN last night. It will provide her with all her nutrients while she’s not eating, so she will hopefully stop loosing weight. Without her eating on her own though, she can’t leave the hospital. We tried last night to bring in Swiss Chalet, one of her usual pick me up meals. Not much luck. Tonight was chicken nuggets, another favorite. She managed one nugget. We’re not quite sure what has caused this, but it’s definitely worrisome. We’ll just hope that tomorrow she’ll kick back in.

So not much happening other than hanging out at the hospital. Am I ever glad we had a week off before this. I feel as if I haven’t even been home since we’ve gotten back. The doctor has had an e-mail from Toronto hospital that has raised new questions. I’ll fill you in on that later as we’re feeling a little like ping pong balls. No sense whacking you as well. Within the next week or so we may be up to new things. Who knows? As much as it is frustrating that we feel as if we have a plan, and then it changes, we do understand. With original diagnoses there is a planned out map of treatment. With relapses there is no map. Each child is different, and there is no set treatment schedule to follow. They have to take things as they come and we just follow in their path. Patience has definitely become one of our main virtues.

So hopefully we’ll be home soon. I’ll keep in touch. Bye for now.

Sunday, February 24, 2002 at 09:41 PM (CST)

It’s been a long week. Ashley is still in the hospital. Her fevers have been fairly constant and we have one explanation so far for them. She has an infection in one of her lines on her hickman. Not sure how that happened. Seems like quite a co-incidence seeing as we’ve just come back from vacation. I thought we were so careful, but who knows how or why. They’ve started her on antibiotics so hopefully she’ll start fully recovering soon. They have drawn more blood to test to make sure they’re not missing anything, so hopefully we’ll have those answers within the next few days.

She has been stuck in her room since Monday night. She hasn’t even complained. For the 7 or 8 hours that she would get fever free per day, she was content to just play cards, color or play other games. She’s slept a lot, which we all know is definitely not Ashley. She’s also still not eating, which is definitely not Ashley! She has us quite concerned. She just isn’t interested in anything we give her. She’s not grumpy or miserable, just plain not hungry or thirsty. We have to fix that before they’ll let us go. She finished her chemo today and her numbers have already come crashing down. Her platelets are actually pretty good considering all the fevers. Normally fevers eat at platelets pretty good, but they’ve hung on for now. She is already neutropenic. We didn’t know that this morning, so she went to the playroom for her first time all week. It was short lived when the nurse asked us to go and get her after she got her counts back. Her fighting cells for infection (grans) were basically non-existent. She managed to do a couple of crafts and was content to be confined again.

She was right into her patriotism for Canada. One of our friends brought her a tattoo of a Canadian Flag that said I am Canadian on it. It went on her cheek and she has proudly been showing it off. We sat today and watched the Men’s Hockey game and she was cheering when they got goals. It was very sweet.

She is also now the proud owner of two humungous Harlequin Kissing Bears. They had a draw or whatever it was for the kids today. They put all the kids names in a hat and whoever’s name was pulled won these cute BIG bears. Ashley’s name was pulled!! They are as big as she is. She’s tried to put one in her bed and couldn’t even lift it. She’s tickled pink with them, and is even more impressed with the magnets on they’re noses that makes them kiss. The child life worker had to go and get her camera, as Ashley wanted to pose with her new friends. We’re not sure where they’re going to fit when they come home, but she can’t wait to seat belt them in the van when do go. :-)

So we survived the weekend thanks to help from friends and family. Derek’s game ended up being after Nathan’s game had started, so friends took him to that. We would have liked to have watched that game as well, but the cloning just didn’t happen. He won, so more playoff games for him. Nathan’s team won at Copps. His team scored a goal with only 2 seconds left that broke the tie. I haven’t been able to see one of Nathan’s games in a while and he has definitely improved. He was on his feet more than his butt this time. :-) The Bull Dogs game after was good fun as well. They lost unfortunately, but watching the little tiny boys play in between periods was soooo cute!!!

Well we’ll be in for a few more days. Hopefully she’ll start to improve soon. We meet with the radiation therapist tomorrow, so we’ll see what he has to say about the radiation treatments.

Talk to you soon.

Wednesday February 20, 2002 10:56 PM CST

Well reality has certainly come crashing back after our vacation. We took Ashley to clinic Monday morning, and everyone was so excited to hear about her trip. She was showing off her Mickey Captain and the professional pictures that were done. I still haven’t had time to figure out how to burn our pictures onto CD from our camera so we can have paper copies to show. I’ll hopefully learn that soon (in all my spare time :-) )

Well just as we had thought they are rerouting Ashley to try radiation first. The surgeon’s in Toronto are not saying that they couldn’t do the surgery, but that it would be incredibly life threatening. I mentioned before that they thought it was also attached to the left atrium of her heart. Well with it also being attached to the pulmonary artery, they feel she will loose a lung, and they would also have to put her on bypass and then try and remove it from her heart. With possible reconstruction surgery on her heart and loosing a lung, obviously this is horrific. They have decided to try radiation, which she has never had before. They are hopeful that they can do it with minimal damage to her organs, but we need to have a meeting with the radiation therapist to find out all the details.

So because this will take a few weeks to set up, they checked her in on Monday night to give her another chemo, to hopefully hold her at bay until the radiation starts. Well our week so far has not gone quite as planned. Just hours before taking her in, she spiked a fever and was throwing up. When we took her in, they said her numbers were so good, they would probably proceed with chemo. They didn’t. She was very unwell through the first night, and the fevers were constant. They decided to hold off until today hoping the fevers would break. She hasn’t eaten since Monday at noon, which is totally unlike Ashley. Tuesday she was just lying in her bed watching TV all day. Today, finally her fever broke and she was in fine spirits. They started the chemo and we thought all was well, and she was on the road to recovery. Around 7:00 she spiked again. She had been consistently running fevers as high as 39.5 or higher. So we’re not sure what she’s battling right now. We’re hoping it’s just the flu, but they’ve swabbed her so they can check for other infections. We’ll have the results of those tomorrow.

So like I said, reality is certainly back. We’ve been back running around for dance practices. Competitions are coming up soon, so there are extra practices. Hockey playoffs are happening now. Derek’s team is in first place. This weekend is going to be very chaotic. Nathan has hockey in the morning, but he is also playing an exhibition game in Copps Colliseum on Saturday night before a Bull Dogs Game. Ashley won’t be out of the hospital until Sunday now, so this has definitely thrown a wrench in our plans. Derek’s hockey game is at the same time as Nathan’s due at Copps and with Ashley still in, it’s complicated. Is cloning of parents available yet???

Well I’ll let you know how the rest of the week goes. Oh ya, I’m going to post a couple of pictures from the trip. Couldn’t find a nice one of the whole family from the camera, so I’ll have to figure out the scanner as well. :-( We have some awesome family pictures that were professionally taken. Soon I promise.

Bye for now.

Monday February 18, 2002 8:37 AM CST

Well we’re all home safe and sound! I’m sorry I didn’t post while on holiday. I would have had the opportunity as they had a computer section next to a lounge that was 24 hours accessible. The rates were very steep so I kept a manual journal thinking to update our daily events when we came back. Now looking at everything I wrote, there’s no way I could bore you all silly with every thing we did. I will try to just summarize our trip but bare with me if I get long winded.

The trip was everything we could have hoped for and more! We had an uneventful flight to Orlando, Florida. Actually an awesome flight as I’m sure through late booking availability, we had executive seating. What a treat! The Wish Foundation had even made arrangements for the kids to have children’s food for lunch. Nice big seats, lots of leg room, yahoo! What a nice way to start our vacation. Unfortunately Ashley had woken up not feeling well. She threw up in the airport before we left and then again on the plane. She was still chipper enough to enjoy her journey and after a 50-minute bus ride after arriving in Orlando we saw the ship ‘Disney Magic’. What an impressive ship! We had tons of paperwork to do when we arrived so we were delayed about ½ hour getting on the ship. Finally we could board! Just as incredible inside as out. A five star hotel could barely compare. We settled and were sailing before we even knew it. Time to explore. All I can tell you is thank goodness we didn’t do the 4-day land and 3 day cruise. It took us a few days just to figure out where everything was. There is so much to do on this ship. The restaurants are all fabulous. The staff are unreal. How they can stay so cheery when most of them work 6 months on and a few months off. 7 days a week and 12 hour shifts. Eeek! There were shows every day in the theatre. Fabulous shows! Very talented singers and actors. They had a fun game show one night called ‘ Who wants to be a ‘Mouseketeer’ a spin off of Who Want’s to be a Millionaire, but the questions were all about Disney and their movies etc. Seats were randomly selected and children played but had to be accompanied by an adult, as the prize was a 7-Day Cruise. It was very fun. There were clubs for each of their age groups that went from early morning until 12 at night. Really neat things like making commercials, Disney characters, scientific stuff etc. They’re two main clubs had everything children would need. There was a sports center, ESPN lounge, arcade and the list is endless. The kids only went a few times, but enjoyed themselves when they did go. The pools were fun, there was a Mickey Pool and a Goofy Pool and an adult pool too. Ashley couldn’t wait to get her dry suit on. She was able to spend as much time in the pools as she wanted, even tackling the water slide. She was jumping in, swimming and having a blast!

Well Sunday and Monday were spent on sea. The weather was fantastic. The winds on deck were a bit hard to get used to at first. Walking around like a drunk the first night until we had our sea legs was fun. Ashley and Danielle woke up the first morning a bit queasy but soon were back to normal. By the end of Monday Ashley was feeling much better and didn’t show any more signs of sickness. Maybe it was just the excitement of the trip that set her off.

There was so much to do that we were at first overwhelmed with it all. A guest services gal was assigned to Ashley to make sure that her trip was as memorable as it could be. This was a wonderful surprise to us, as the Wish Foundation obviously couldn’t control what happened on the ship, and for the Disney Cruise Line to take over was fabulous! She was awesome. There was a Mickey Captain stuffed animal waiting for her in our cabin. Everyday through the week we would come into our room with little treats being left. Arcade tickets for the kids a couple of times, stuffed animals for all of them. A personally signed picture of all the characters for Ashley. The list is endless for what this gal and the ship did for us. Our biggest treat was near the end of the week and I’ll explain that later. I’m jumping all over the place.

Tuesday was our first stop. St. Maarten. Our planned excursion was to one of their beaches. The kid’s had their first experience with salt water. Not impressed at first! There was some spitting and crying with sore eyes etc at first, but they soon adjusted and had a blast with the waves. Ashley gave her Dry Suit a try in the ocean, but because she didn’t like the salt water, preferred to play on the beach. It was a 5-hour day trip and then I took Danielle and Derek into the city to do a little shopping. We were having tropical night on the ship and were told there was a really neat flea market. We got everything we needed but I had to learn to barter. I’m definitely not very good at it. It was a great day ending with a huge deck party. Ashley was dancing up a storm. Well the next day we landed in St. Thomas. Being non-US residents we had to go through immigration at 6:00 am. Yuck! Our first view of St. Thomas was gorgeous. Turquoise water. White Sand. Well we thought that was awesome. The beach we went to was even better. We took a smaller boat to St. John. Pictures I’m sure just won’t do it justice. It was the nicest beach we’ve ever been on. Plush white sand. It was just beautiful. Derek and Ken managed to do some snorkeling. That was only a 3-hour beach day, which left us lots of time to do more on the ship. No shopping that day as we could see traffic was horrible and we had a deadline of 4:00. We weren’t going to take our chances for an hour shopping of missing the ship! Ashley was exhausted. She slept from 6:00 basically until 9 the next morning. We tried to wake her up for dinner, but she only lasted 10 minutes, so we took her back to bed. Our dinnertime was scheduled at 8:30 every night. They assign you a dinner slot and you can’t change it, but we got used to it. Just made for very late nights.

Well I’ll skip right to our visit on Friday to Disney’s own Island Castaway Cay in the Bahamas. What an impressive Island. Impeccable as everything with Disney seems to be. It was a day spent lounging in the sun. The kids had a blast in the water. Ashley finally spent time in the salt water with her dry suit. She had been using her it everyday on the ship, but finally put it to good use in the ocean. With no waves to battle here she floated on a tube and swam around for at least an hour. She was all smiles that day. We ended that day with our best gift for Ashley. We had been invited to a private meeting with the Captain and a special visitor. Well in walks Mickey. She was so ecstatic she basically jumped into his arms. She wouldn’t stop hugging him, and in all the pictures with him, she’s basically rapped around him. The poor Captain didn’t stand a chance when he came in. He was very nice. We’ll have to post the picture that we have of the three of them. They had a professional photographer come in and all the pictures they took in that visit were given as gifts and brought to our room later that night. What an incredible and thoughtful gift to Ashley. These will be some of her best memories. We have so many thanks to make for such an incredible trip for our family. We aren’t sure how simple words could really explain all the feelings that come over us when seeing Ashley sooo happy and fulfilled on this trip.

Well Saturday was up bright and early again for immigration. I don’t know who came up with this 6:00 am thing, but someday needs to be shot! Much too early when the night before is your last night and packing needs to be done, people to say goodbye to, and the kids are hyper knowing it’s they’re last night. We were running on about 5 hours sleep when we started our day. Our flight from Orlando to Ottawa wasn’t until 2:30. Derek had bought a necklace in St. Maarten that had some silver sharp looking objects on it. They weren’t sharp, but security told us he couldn’t take it on the plane with him. We had to mail it home. Different experience for sure, but I do understand their strict measures. Trying to explain it to Derek was a little more difficult. Finally landed in Ottawa about 5:30 and only 1 of our 4 pieces of luggage arrived with us. Not good. I had already felt emotional since Ashley’s meeting with Mickey and this undid me. Our suitcases had all the pictures that we had been given and all our mementos. I was devastated. In Toronto when we finally arrived around 8:00 we found out they had gone to Montreal and we had them again by 10:00. Thank goodness! We got home by 11:30. It was a long and emotional day. Over and above all that Nathan had got sick the night before and was running fevers during the day. Threw up on the plane, but bless him, not one complaint. He just slept every chance he got.

So much for not being long winded. We’re just so incredibly fortunate that we had the opportunity for our family to experience such an awesome trip. From the generosity of the Wish Foundation and Disney and USIA for Ashley’s dry suit, it was the unforgettable trip they all wanted us to have.

Reality is back and today hopefully we’ll find out what the plans are. I will keep you all up to date. Bye for now and I know I missed lots, so if I remember more memorable things I’ll post them later.

Friday February 8, 2002 5:11 PM CST

Well one more sleep to go! I’m so glad that this wasn’t a long wait for the kids. They’ve been on a countdown. They are very excited and nicest of all, Ashley is soooo happy to be going and can’t wait. She is telling everyone she sees’s where she is going.

All is well with her hickman. It was a long morning. They wanted to have an x-ray done to make sure it was sitting internally where it should be. That was over an hour wait! The doctors checked and it has partially come loose, but there’s still another catch inside that’s helping it to stay in. We actually discussed in the future getting this removed and putting the port in. But that is far into the future and would involve another surgery. Not a big worry right now for sure!

I forgot to tell you all Ashley’s reaction when she found out we were leaving on her cruise in 5 sleeps. She was jumping up and down, laughing ecstatically. Then bless her but she started to cry. She was still laughing and the tears were rolling. She said, “Mommy I’m crying, but their happy tears right?” When they’re so young they just don’t know how to control the emotions that are going through them. Brought a few tears to my eyes as well. There aren’t even enough thanks we could give to the Wish Foundation for bringing tears of happiness to Ashley. And the trip hasn’t even begun yet!

Having to go to the hospital threw me off a bit for packing etc. but all is still going well. Ken had to go to Pittsburgh yesterday to see a customer. So it was a long day for him as they drove the 4-5 hours there and then back again.

Well all that’s left to do is put the cloths in the suitcases. Ashley didn’t want to go to school today. She was tired again, and it didn’t help that I had to struggle with her to make the bus. Of course they missed and I had to drive them in. It didn’t go well, but the teacher came to the rescue and scooped her up and took her in. She managed the whole day and has come home with a smile on her face.

Well I’d better go and pack those suitcases. If I’m able I will try and post a few entries while on the ship. It won’t be a priority obviously, but I’m sure they’ll have the internet and if I can I’ll try and let you all know a few things that we’re up to. Plans will hopefully be in motion for Ashley when we return. All the meetings will hopefully have happened and some decisions made. It is almost sounding as if they may do radiation first before the possible surgery now. Just a hint of that from the doctors this week. Who knows? We’ll find out soon enough. Time to forget, enjoy and relax.

Bye for now.

Wednesday February 6, 2002 10:51 PM CST

Well, it’s been an interesting week so far. Monday morning I called the Wish Foundation to let them know when we could go. We received our call back around 4:00 that they have booked the trip! We leave on the weekend! Amazing that they were able to manage such a quick booking. Our morning was busy. The gal at the Wish Foundation informed us that the kids might need their own passports now. I called Ken and he yanked the kids from school to quickly go and get their passport pictures done. I was on the phone finding out if we could get them done in this short of notice. They said they would manage with the circumstances. Just before we were going to the passport office we were called and told we could just use their birth certificates. Thank goodness! What a panic that would have been. Giving up their original birth certificates this soon to going would have made us very nervous.

So this week so far has been a mad rush to get medical forms filled out by the hospital. Plans for looking after the animals are done. Our old sitter is in the house for the week we’re gone. Of course shopping. Derek and Danielle needed a whole new summer wardrobe. They just won’t stop growing!! Of course feet have grown as well. Finding sandals at this time of the year was a challenge. After many stores, we managed to find them today. We received a box from the Wish Foundation today as well. Inside were 4 Wish Bear’s for all the kids. This organization is so awesome! They even gave us spending money for day trips while we’re on the cruise. They have thought of absolutely everything!!

Well tonight has been fairly interesting. Ashley’s VON came to do her bandage change on her hickman. I was fairly certain when the bandage came off that it looked longer. Sure enough her hickman line looks like it’s falling out!! Not good! Of course this would have to happen right before we leave. So we’ll take her to clinic tomorrow to see what’s up with that. If it comes out she would require surgery to replace it. That obviously wouldn’t happen before we went. We’ll have to wait to see what they say.

Ashley managed a whole day today at school. Hooray!! Monday she didn’t want to go back to school after the passport photos. She was crying etc. Soft us brought her home. So today was very nice. I had a whole day to do what needed to be done. I attempted to go shopping yesterday, and she was such a big help. I had to take things out of the buggy that she had snuck in. Important things like nail polish :-) . Clothes that she wanted but had thrown whatever size in. She was sooo helpful!!

Hopefully her hickman stay’s ok and all will be well. I’ll post before we go and let you know how it went at clinic. Bye for now!

Sunday February 3, 2002 10:55 PM CST

Well I’m sure you’ve all been waiting for this post to give you the answers we’ve been waiting for. Well, there is still no decision. Friday we took her to clinic and her numbers are all back up to snuff. Platelets are back up to 153. Great numbers! Now maybe all that bruising will calm down. Her legs look like she’s been run over by a steamroller or something. She took a wipe out coming out of the elevator at the hospital the other day. Hard enough I actually wondered if she’d maybe broken something. So that’s a real nasty one on her knee.

So I’d better explain. The doctors valiantly tried to get in touch with the doctor in Toronto to find out what had transpired the night before. We were there until 12:30 and they still couldn’t get an answer, so they asked us to hold off on booking the cruise until Monday. So much hinges on their answer that we can’t book it. A possible chemo etc. So we left still with no answers. I sort of expected it though with all the bad weather. I wondered if they actually would have had the meeting etc. The doctor called us at home today and informed me the meeting now won’t take place until Feb. 7th but the surgeons did suggest going on the cruise as soon as we can. So we’re going to call Monday and hopefully we can get on the next boat. We will go on our trip with no answers but hopefully by the time we return a plan will be in motion. No matter what the answer, from my discussion with the doctor today, we’re not going to like it. I will only tell you that what the surgeons in Toronto can see from her scans the tumor is seriously and badly situated. I don’t even know how I can write how much it scares us. We are beyond petrified right now. We’re supposed to enjoy and forget on our cruise. Our hearts are weighed so heavily right now. I will explain in further all the details of this discussion when we have our answers. There is a very strong possibility that the surgery will be much too life threatening for Ashley to endure.

There is not much at this point in her little life that she needs more than the hand of God and many prayers. We are eternally grateful that at this point she is still so untouched emotionally from this horrible disease. She will be able to go on this cruise, as any normal 4 year old should. We are thankful for the wonderful memories it will give all our children and us. She has been off her chemo long enough that she won’t require any of her nightly needles or her med’s. So other than her flushes and bandage changes for her hickman line, she will be medically free for the trip.

We did have a very good weekend before our phone call today. The birthday party with “Britney” went fabulous. The girls had a blast and Danielle said it was an awesome party. I’m glad we were able to bring smiles to their faces. I may add the picture of Ashley taking a bath in her wet suit when I post this entry tonight. She was giving it a full work out and spraying herself with a Barbie shower. Also one with Danielle and Ashley and “Britney”. I’m not feeling up to spending too much time tonight, so if their not there check in a few days.

Well we’re off to absorb our news a little more. I will try and keep you up to date on if the Wish Foundation is able to plan our trip quickly. If they aren’t successful we have to go back to the planning board with the doctors. We aren’t prepared at this time to have her off treatment for any longer than the three weeks.

Well goodnight. Thank you for keeping Ashley in your prayers.

Wednesday January 30, 2002 1:13 PM CST

Well, two entries in so short of a time. A new record. I took Ashley to clinic Monday morning with hopes that her platelets were high. No such luck. They are only 58. Our clinic nurse came and told me that even if her numbers had been high enough, she wouldn’t have gotten chemo anyway. Confused. So were we. They have heard back from the surgeon in Toronto, and Ashley is being presented to their Tumor Board on Thursday. They don’t want Ashley having any more chemo until they have made their decision. We will know this on Friday. This throws our plans for the Cruise into a state of confusion. With not knowing until Friday, and with no treatment plans we aren’t sure how soon we can go. They will probably want us to go right away, but we have no idea if the Wish Foundation could plan a trip that quickly.

So needless to say we’re a little disappointed. We had thought if no chemo Monday, we would just delay the trip one week. If the surgeon’s decide they would like to do the surgery and want to do it immediately we’re in trouble. They will require a team to do her surgery, cardiac surgeon’s etc. which would take some co-coordinating and we would have to make Ashley available. So we’ll have to wait and see I guess. Over and above all that the surgeon thinks it may be attached to the left atrium of her heart and her pulmonary artery. Resting against and attached are two different ball games. We had just a few weeks ago found out about the pulmonary artery. The atrium of her heart is news to us. Like the spot wasn’t already in a bad spot it has to made even more complicated. We’ll have all this confirmed on Friday when we talk to the doctors here and find out Toronto’s decision.

On a happier note, Ashley tried her now stretched Dry Suit on again, and it fits perfect. Ken filled the tub full and in she went. Her first full bath in forever! She was having a great time. She didn’t want to come out. Ken wants to take her swimming at the community pool to give her a chance to really play with it. He took some pictures and hopefully within the next few days I can download them.

Well Friday is D-Day. We’re desperately hoping they can give us our answers. From there hopefully we can plan her cruise. It will be a busy day. Danielle’s birthday party is that night as well. Sssh, but Britney Spear’s is coming (the young girl that came to the hospital a while ago). She doesn’t know and she’s frustrated I won’t tell her what they’re doing for her party. It should be fun for them.

Ashley is going to school today. She’s probably going to be tired. I got home around 11:00 and she was still up. I just don’t know where she get’s all the energy. Of course it was hard to wake her up. Well I’ll let you know how Friday goes. Talk to you soon.

Sunday January 27, 2002 11:10 PM CST

Well we headed off to clinic on Thursday still hoping that the surgeon’s had responded and put us out of our misery. Yes or No? Sounds so simple of an answer. Right now we would just like to know if they are going to do the surgery or not. Still no answer! The doctors here are trying on a constant basis to reach them, but to no avail. We are wondering why, but I’m sure there will be a good reason. I hope there will be anyway.

Ashley’s numbers are on the way up, but very slowly. Her platelets are only at 26, which I was expecting. When her VON took her insuflon out of her leg on Wednesday it bled, which it normally doesn’t do. So with no news from Toronto it was a quick visit in clinic. We managed to do lunch with Grandma, Papa Stan and Uncle Steve. Then picked up the groceries that the kids have been reminding me I’ve needed to do! Life comes to a halt if the cupboards aren’t giving more than 3 choices of snacks!!

We had Derek’s birthday party that night, which was fun. We took the 8 boys to play Laser Tag. Ken’s team won once (barely :-) ), and Derek’s team and mine won the other game. Friday Ashley headed off to school with the other kids. That unfortunately didn’t last long. I had a call around 10:00 am that she wanted to come home. She had a rash come up on her hands, and wanted them to call me. I went to get her and the rash was already gone, but she wanted to come home anyway. I think she’s getting used to spending her days with me now, and would prefer, as much as she likes to go to school, to stay at home with mom. I’ll have to work on that.

Well Ashley’s dry suit has arrived! It didn’t come in until Friday, but arrived safe and sound at work. Ashley was very excited. Bless them, but it’s all purple. Her favorite color. Amazing how they managed to make it. The smallest zipper they had was 28” and she would have needed a 22” one. They put it across the shoulder blades. The directions told us to stretch the neck and wrists before trying it on. Ya right! No way was she not going to try this new suit on. So we thought we’d try everything except putting her head through. It went on and she wanted to put her head through, with some difficulty. It fits beautifully, but needs stretching just like they told us!! I don’t think blue is her natural color. Only joking. We had to take it off right away and are now stretching as they have recommended. We’ll post a picture as soon as we can get it back on her. This company has gone so above and beyond. They had also enclosed in the box a knapsack, a baseball cap, a few T-shirts and a letter to Ashley wishing her a wonderful vacation. They have been incredible!

Saturday was dance and she started out fine. Half way through the class she wanted to come out and showed me this rash she had complained about at school. It almost looked like a poison ivy rash on both hands, and a small patch on her cheek. She wanted to go home as it was irritating her. By the time we had gotten to her cousin’s house for her Birthday, no more than 45 minutes later, the rash was gone again. Very weird. It will be hard on Monday for the doctors to tell me what it was if it’s not there. She had her friend Brittany come for the day to play. It’s been a while, and they had a great afternoon.

Today is Derek’s birthday. He was hoping to get a Curtis Joseph Goalie Helmet. (Toronto Maple Leaf’s Goalie for those in the UK and elsewhere who don’t know who I’m talking about). He informed me of this on Wednesday. That obviously didn’t leave me much time and I had already bought his gift. I have tried to search the net for one, but I haven’t had any luck. I don’t even know if they make them. I haven’t had time to search any harder than that, so maybe by next Christmas I will have found one. :-)

Well tomorrow will come soon enough. Depending on her platelets, she should be going in for chemo that night. Her platelets have to be 100. It will be interesting to see how they have increased in a few days. Depending on tomorrow’s counts, it will determine when we can book her cruise. If she is delayed due to poor counts, it will bump everything else. We can’t take her on the cruise unless she is passed the transfusion stage. As the cruise can’t give any transfusions or check her blood, we must go medically free. After the last few weeks we now know she will need the full two weeks after chemo. We also want to try and make sure she is not off treatment too long. Taking her on the cruise will delay treatment/surgery (?) at least one week. We’re hoping the timing won’t be any longer than that as we don’t want to take any chances of this tumor growing. Sorry this journal entry held no answers as I know you have all been waiting as impatiently as we for our surgical answer. So much depends on it. I’ll let you all know how Monday goes. Bye for now.

Wednesday January 23, 2002 11:57 PM CST

Well it’s been over a week since I last posted. How time flies. All the answers that we were hoping we would have still haven’t happened.

Ashley went back to the clinic on Friday and she got her blood transfusion, and she needed more platelets. So a double transfusion for her that day. I was voicing my concerns over this to the nurse’s and they have tried to reassure me that this is just happening because she has had a lot of chemo and her numbers are now reflecting that. I’m sure the virus she had hasn’t helped.

Rebecca was in getting chemo so we stopped and visited her for a bit before we went home. Ashley wanted to stay and hang out for the rest of the day. She’s so cute that she actually wants to stay in a hospital.

Saturday we took our chances and took her to dance. She was neutropenic but she hasn’t been to dance in so long and she really wanted to go. She only had enough energy to do about ¾ of the class and then she sat and watched the rest.

By Sunday night I was quite concerned about her. She just hasn’t been herself. She hasn’t been drinking as much as normal, eating is sporadic. She would do odd throwing up, but not constant. It wasn’t enough that I could call the doctors and say she’s dehydrated and I want her in, I just wasn’t comfortable with her not being our usual Ashley.

Monday morning she woke up our old Ashley. She went to clinic with Ken that day as I was going to stay with my sister in-law while she had an operation. Ashley needed more platelets. It was a long day for them. I’m really hoping her numbers will start their way back up soon. We’re still trying to figure out when the best time to go on her Disney Cruise. If she can recover her numbers by Monday, she will have another chemo and we will go at the end of her recovery of that chemo. Roughly 3 weeks away.

I must share with you a wonderful thing that has happened for Ashley. When she was given her trip on the Disney Cruise, we asked our Travel Agent if she had a movie showing the cruise. We picked one up and Ashley then had a better idea of what was entailed with her wish. She is sooo excited. She probably is watching the movie 10 times a day. Then she asked me if she was going to be able to swim in the Mickey pool on the boat. I realized that with her hickman line, which is in her chest but has external tubes coming out, can’t get wet. This hickman is where she receives all her chemo etc. She doesn't get any pokes, but that's the only good thing with it. She's not able to get her lines wet or her bandage because the line goes directly into her chest and any bacteria could cause infections. I had to tell her no, she would not be able to swim. When the hickman went in at relapse, baths all of sudden haven’t been fun. We haven’t even hit summer yet. I found out later that Ken and Ashley had had the same conversation earlier while they had watched the movie. Ashley was sad that she wouldn’t be able to swim as this is one of her favorite activities.

Ken decided that he was going to try looking into a way that she could go swimming. He looked up on the internet ‘Dry Suits’, instead of wet suits and he sent off e-mails to a few companies asking if they had children’s suits and could we possibly get one soon. It was important enough to Ken to offer to have a custom suit made for her, whatever the cost, so she could enjoy this Cruise fully. Because we haven’t known if we were leaving in a week or three, time was an issue. He had responses back from a couple saying they didn’t make them but referred us to where we may be able to have it made. One company responded personally to Ken at work and asked him a few questions. Asked for some measurements. They weren’t sure if they could make it, as children’s suits were not a part of this companies inventory. That night they called us for a few more measurements and told us they were going to make it. They wanted to know what her favorite color is etc. When Ken asked the best payment method they replied, not necessary, this is on us!! Our hearts are full of heartfelt thanks. How on earth do you put in words acts of kindness this enormous? This company does not know Ashley or us. They are located in St. Helen’s Oregon. Acts of kindness like this touches you in such a profound way that mere words cannot begin to express the flood of emotions that take over at that precise moment. That this company has enough compassion and generosity to help make Ashley’s wish trip the best it could possibly be is overwhelming! Ashley’s suit is being sent via Fed Ex on Tuesday and will be here by Thursday. Absolutely incredible!!! All the people who worked so hard at bringing Ashley’s wish to swim a reality deserve such heartfelt thanks. So when we get the suit we’ll put a picture in. Keep a look out for it.

Well Wednesday we sent Ashley to school. This is the first day in 2002 that she has been able to go. She had a great time, and I was able to run off to get a few things done. Preparing for Birthday Parties!! Thursday will be busy. We have clinic and then Derek is having his birthday party that night. We’re taking 8 boys to play Laser Tag. I can’t wait!! I think I have more fun with that than Derek :-) Well hopefully we’ll hear something at clinic about surgery. I really hope her numbers are on the way up!! I’ll let you know soon. Bye for now.

Wednesday January 16, 2002 11:09 PM CST

Well this week so far has been quiet. Ashley unfortunately hasn’t been feeling well. She left the hospital not quite up to par. I was unsure whether it was the chemo or if she’s got a bug of some sort. I took her to clinic on Monday and we had to hook her up to give her anti-nausea medication, as she was so sick nothing would stay in. She also needed platelets, which I was very surprised at. I can’t believe her platelet count dropped that quickly. I actually questioned if the numbers were right, and they tried to assure me they were. It has happened, not often, that the numbers have come up incorrect. She was due into clinic again on Thursday but I’m going to have to take her early, because I think she may be getting dehydrated. She just won’t drink enough. I was hoping she could go to school today, but oh-well, maybe Friday.

We had some spectacular news that I wanted to share with you. Through the children’s Wish Foundation, Ashley has been entitled to a wish. Up until relapse we were hoping to save that wish for when she was a bit older and could decide herself exactly what she would like. Children can ask for just about anything except anything motorized. Well when we came back from Florida a year ago October, we knew that her wish would be to go back to Florida. She wanted to visit the village at Give Kids the World again. Unfortunately that is not an option. That was a one time only trip. Well when Ashley relapsed we gave it a lot of thought, and decided that maybe we should be looking at that wish sooner than later. We were suggested that the she would probably love the Disney Cruise. Well we sat on this again, not sure what we should do, but last week with the possible upcoming surgery and the seriousness of it, I asked for them to check if Ashley could possibly have the cruise as a Wish. With a family of 6 we were worried it would be too expensive.

Well yesterday we had a call that she has been granted her Wish. Just like that!! It is so overwhelming! All we know at this point is that we would be flown to Florida and would leave port there. Where it goes I don’t know. We’re trying to decide right now if we should stay the 7 days on ship or do the 3 days on ship and 4 at Disney. Because we were only at Disney a year ago, it’s a hard decision. If anyone’s been and can make any suggestions we would love to hear them. Well when is also a big decision. We feel that maybe we should try and do this trip before her surgery, but having not heard anything from Toronto yet we are unsure when and if they are going to do it. If the surgery was to happen, and can’t be scheduled for a while then she’ll have to have more chemo. Scheduling a trip after chemo can be tricky incase she needs blood etc, so we’d have to plan it carefully. Decisions, decisions!! Well that’s what’s happening in our lives right now. We certainly don’t lead a dull life that’s for sure!

I’m hoping Ashley won’t have to be admitted, but with her being this sick I’m sort of expecting when she’s neutropenic, which could even be today, that she may get a fever and we’ll be in. We’ll have to wait and see.

I’m typing this as the days goes on, so bare with me. We went to clinic today and we hooked her up to get hydrated. She wasn’t too dehydrated, but she certainly needed some extra fluids. Over and above all that, she needed more platelets!! I couldn’t believe it. She was 12 on Monday (remember 100 – 120 or higher is normal), and she had a transfusion. Well today she was only 8. Where are they going? Normally when you have low platelets you bruise or bleed very easy, but she has no new bruises to indicate that they were this low. Maybe hanging low for the last few days has saved her from a beat up body. I was told when I expressed my concern, that the more chemo you have obviously the more her numbers will drop, but this is drastic from the last chemo. She also was only 77 on her hemoglobin (blood). We will go back on Friday for that transfusion. She has just not been up to snuff with this chemo. We also found out she has a virus which is causing all those trips to the bathroom. So the one good thing is that the chemo hasn’t caused it, only irritated it I’m sure. We were hoping for some answer’s from Toronto today so we could try and plan our trip, but of course no go. The doctors here in Hamilton at least know now what we are trying to do and hopefully they’ll let us know soon.

Ashley told the kids when they came home from school today about her wish. They were soooo excited!! Bless there little hearts, but Derek gave her a big hug and said thank you Ashley and Danielle and Nathan then followed suit. Of course the only problem with them knowing now is “When are we going???” I’m sure we’ll get tired of that question in the next few days. Well I’ll end this entry before it gets much longer and post again soon!

Bye for now.

Friday, January 11, 2002 at 08:30 PM (CST)

Well a lot has happened since I last wrote, and I have waited this long because it’s been a fairly difficult week for us, and we were hoping for more answers to tell you. I will explain all this near the end of my entry and let you know what Ashley has been up to.

Friday of last week Ashley had Brittany’s birthday party to go to. She had a great day and it was nice for our other kids who all had friends over. They were able to play without Ashley wanting to get involved which sometimes is frustrating for them. Saturday found us back into hockey. Nathan played well from what Ken told me, 7:00am is much too early for the rest of us to go! He is improving steadily which is nice for him. This is his first year so he is a little behind most of his teammates who have played before. Saturday night Danielle ended up being sick. We’re still not quite sure what from, as it didn’t last too long. She was up in the night, and we kept her home Sunday from church incase she was sick again. We went to friends in the afternoon and Ashley went skating for the very first time! I actually found skates to fit her and away she went. She did great!

Well Monday had us back in clinic and her numbers are great. She is checking in for chemo tonight. I’ll explain her chemo later when I explain what’s transpired with the doctor’s. She went to school for a few hours in the afternoon and I zipped off to work. Year-end! There was a little bit of snow so Ken took the kids’ snowmobiling after school. With him in the hospital all week and the weather being the way it is, he thought he’d better take them while there was still a chance.

Well Ashley’s week so far in the hospital has been pretty typical. She is having fun. She’s playing lots. She wasn’t able to be in Rebecca’s room but they’re making the most of it and getting together to play when they can. She had a Teddy Bear Picnic one day and that afternoon some of the Canadian skaters that are competing for the Olympics came in to visit. She got a few autographs and was interviewed by a TV channel. Problem was they told me Cable 14 at 5:00. Well it wasn’t there and I couldn’t find anybody to tell me what channel it really was. So if she was on, we missed it. I may post a picture of her with the skaters incase any of you know who they are. Michelle Currie, Annie Bellemare, and Megan Wing & Aaron Lowe (couples).

She had a friend come to the hospital today. This little girl is a miracle survivor of cancer. She is only 3 and she went through so much in her little life. Her chances of survival were next to nil and she had a life saving surgery in Toronto almost 16 months ago. Hamilton’s nurses haven’t seen her in almost that long as her care has continued through Toronto. They were so pleased to see her. It’s so nice for the nurse’s to see success stories. They deal with so much, treating sick children. Many who don’t survive and seeing children survive and flourish helps make their efforts more worth while (from what they said to me today).

Well, I may as well start letting you know what’s happening medically with Ashley. I’ll start with NY as I have mentioned before that we were looking into treatment for Ashley there. For Ashley to be eligible for this treatment she would have to have another transplant. Toronto will not do a second transplant. Canada, because this is experimental, feels that it is not worth the risk to put a child through this again. I could explain much more, but I will make it simple and say we agree (for now) but if that were our only option left for a chance of survival we would have to look seriously into it at that time. We have also been told that the government will not pay to have the transplant done in the states. Battling the government right now with everything going on in our lives is just not feasible. If in the future, if this treatment seems the best route for Ashley we will have to look at ways to try and convince the government to change their minds. It is so unfair for Canadians to be denied treatment elsewhere because it is in the experimental stages when it could possibly save lives. I won’t get into it, but it’s sad.

Last week as I mentioned, Ashley’s tumor is not shrinking anymore. As I said then, this is not all bad. It’s not growing which is a good thing. When the oncologist’s spoke to the surgeon on Friday, he feels it has shrunk since the surgical biopsy in September even though there has been no more shrinkage since November. So they decided to stay with the same chemo for now. The other chemo they were considering would have been very potent. Much more potent than any of her other chemo’s (excluding transplant). We were glad to hear that. As of right now she has no organ damage and that particular chemo can be very hard on vital organs.

We always knew that Ashley’s tumor was in a very bad spot and it would be a very difficult surgery. The surgeon informed us when we had our meeting that the tumor is attached to her pulmonary artery, which carries blood to her lung. He feels this surgery is far too life threatening to attempt. We handled the news well through the meeting but reality sunk in shortly after. Speaking to our oncologist later, they still think that it is important for the surgery to be done anyway and they hope that Toronto, being a hospital that deals with difficult surgeries on a regular basis may attempt to remove the tumor. Radiation is also being considered but since the tumor is so close to her spine, they are concerned that if the radiation hit her spine, it could paralyze her. Every option is very frightening, so this has been a stressful few days for us. We have to wait now to see what Toronto thinks. When she is so healthy and bubbly it is so hard to believe that this tumor that is only 1.8 cm can cause this much harm. Regardless of Toronto’s answer, we will have a difficult time in the next few weeks. If they agree to do it, we’ll be petrified and if they say no we’ll be devastated. This seems like a no win situation.

We won’t have much to say until we hear from Toronto, but I’ll try and keep you posted. Please continue to pray for Ashley. At this point I don’t know what we should be praying for - other than a miracle. For us we need guidance and strength. I can’t thank you all enough for your continued prayers and support. It is so comforting for us that so many people are there for us. Your comments in our guest book help encourage us that sharing all this with you will bring a better understanding of her life and the turmoil’s surrounding childhood cancer.

Thanks and talk to you soon.

Thursday, January 03, 2002 at 10:06 AM (CST)

Happy New Year everybody! I can’t believe we’re in 2002 already. We’ve had good days since I last wrote. We’ve managed to spend time with friends and the kids are having lots of fun with all their friends. New Years was especially fun as we celebrated with friends and all our children. All of the children lasted to 12:00. Actually until 2:30. It was a very late night, but well worth the grumpiness the next day. Ashley seemed to have a magnet for anything to bang her head since last Saturday. She’s sporting a few bruises from banging into cement floors and steel posts. I was going to put a bike helmet on her soon if she kept it up. J

Well today we went to clinic. We ended up there quite a long time. With the clinic being closed Monday and Tuesday, today was very busy. Her numbers are all back to normal. Her platelets are nice and high. 315, when only last week she was 12. Very impressive! I guess I can skip the helmet now.

We talked to the doctor that was in clinic this month to get Ashley’s results. They weren’t what we were hoping for. Her tumor has not shrunk as we had hoped. It is the same size as it was the end of November. I suppose the good thing; it hasn’t grown or spread anywhere else. So that’s going to mean a few things. They want to do another chemo, changing the chemo ingredients possibly to treat it more aggressively. Their going to do a surgical consult. The problem is because it hasn’t shrunk it will make it more difficult to remove, and we don’t like the idea that the tumor is active when it comes out. Radiation is obviously going to be very difficult with where the tumor is. We’re very worried about damage to her heart. All these things are what the doctors are going to be looking into in the next week. We would all like to see the tumor removed before she has to go through too much more chemo, but we’ll have to see what the best options are for her and what the doctors all suggest.

Little Rebecca goes for her surgery tomorrow and bless our little Ashley but she doesn’t forget about her new friends. She grabbed a wish chip last night and wished that all her friends could get better, and especially Rebecca and herself. Ken and I are so proud and touched that she still knows how to think of others. They saw each other in clinic and we promised Rebecca we would visit her in hospital. Ashley is pretty ticked she isn’t going in with her this time, but she gave her a big hug good luck before she left. We found out shortly after that Ashley would be going in Monday night, so they may be in together for a few days depending on Rebecca’s recovery.

The doctor told us he would call us on Friday with hopefully more answer’s to some of our questions. Possible surgery dates etc. I’m going to hope and pray that 2002 holds many miracles for Ashley, but it will be a very difficult year for her. Thank goodness that she was blessed with such a happy outlook on life. We had a talk the other day about having to have another surgery. She actually brought it up, and she was hoping she wouldn’t have to have another one. I told her she was going to need at least one more and it was probably going to be soon. We explained why and she was still a little bit sad, but when we explained the doctors were doing it to make her better and they would give her med’s to help for the pain, she said ok and was quickly her chipper self. I know she understands what we were telling her. I also know her ability to accept is her age, but the bravery and acceptance is overpowering. Would we all have the strength that these children have? I hope that through their courageousness we can all learn from it.

Take care and I’ll write soon.

Friday, December 28, 2001 at 10:06 PM (CST)

It's been almost a week again. I hope everyone had a super Christmas. New Year's is right around the corner. Already 2002. I remember the big scare with moving into 2000 like it was yesterday.

I'll start this journal entry letting you know I have finally updated Ashley's pictures. It took me long enough, but trying to figure out a digital camera ended up being the easy part. Trying to figure out how to put the right size in this web page was the difficult part. The original pictures that went on were put on disc by a friend. I have now figured it all out and can update regularly.

Well Ashley ended up being sick on the Sunday. She was complaining of a headache and sore legs. She actually planted herself on the couch which as we all know is NOT like her. She fell asleep and napped for almost 3 hours. I kept checking her for a temperature, but she was fine. We decided to open our presents that night as we were worried because she was sick, she may be admitted. We had a great time and the kids loved their gifts. We played for hours. Late night, but it was worth it.

Ken took Ashley to clinic early in the morning Monday, 7:30 eeek!. They were 8th even that early! Ashley by this point was now throwing up and very unwell. She also needed all her tests done. 8:30 was her ultrasound and she slept through that. Her counts showed she needed platelets. She was only at 12. So they hooked her up and gave her gravol to stop the nausea. I had dropped the kids off and joined them, and was surprised at how sick she looked now. She was definately not the Ashley that Clinic knows for sure. The nurse's and doctors were fairly concerned. Her numbers also told us she wasn't neutropenic. Which meant she wouldn't need to be admitted. That was good news, but didn't overly concern us as the most important Christmas which was with our children had already happened.

She had her platelets and slept through the rest of her tests. She refused to be put in a wheel chair and carrying her and a pole around the hospital was interesting, but we managed. I gave her some Tylenol when we got home. She had spiked a fever after the platelets. Once the medicine took affect Ashley came bouncing back to us. Glad to see!

She's been fine ever since. Christmas day she woke up with a headache still, so I kept her home from church, but other than that she's been great.

This week has been very nice. We visited with family the 24th, 25th and 26th. So it was very busy but most enjoyable. Our nephews, Jacob and Steve had their birthdays on the 24th and the 26th. From the same family, what were the chances, but every year the family makes the most of it and invites family and friends to celebrate.

We had clinic on Thursday and her numbers are climbing. We were in and out. The kids are already showing boredom. I don't know why with a mass of new toys and games, but they think life is not enjoyable and there's nothing to do unless there's 10 other kids around. Anybody relate?

Well she was injected with the isotopes need for her MIBG today. (These help to light up her tumor when they scan). They will do the scan on Monday. We'll go back to clinic on Wednesday to find out all her results. No more chemo for now!

Well I'd better make this short. Ken's off snowmobiling tomorrow. He's soooo excited. I'll let you know next week how everything goes. Take care and incase I don't manage to update before New Years have a very super New Years and very safe one. This New Years will bring many trial and tribulations but with everyones help and prayers, we will make it!!

Saturday, December 22, 2001 at 11:58 PM (CST)

Well it's been so long since I updated this journal I'm not even sure where the time has gone.

It's been very busy, as I'm sure everyone has been with Christmas so close now. We managed to get out of the hospital on the Saturday as we hoped. Ashley left feeling great as usual. We rushed back to Derek's hockey game. He lost but it was fun just watching some of it. I don't see too many as we're usually too busy for both Ken and I to go to the kid's sports together. I'm trying to remember on our last days in the hospital if Ashley did anything exciting. I think Friday was fairly normal. She and Rebecca went to the boy's room next door to have a party. They played games and munched on vegies and dip. With a few joe louies thrown in for good nutrition. :-) Saturday they had carolers come in and then in the afternoon just before we left a young girl came in to do 'Britney Spears'. She has real talent and sang and danced just like her. She does parties and I may when it's Danielle's birthday look into how much and surprise her if she's reasonable. I think she would be pretty happy as she was very upset that she missed it.

That's one thing that the kids struggle with. They know that what Ashley is going through isn't nice and that they wouldn't want to be in her situation. But they see her pretty healthy all the time, but with so many perks. She always come from clinic with candy or treats. She see's neat shows and the kid's feel jealous but know they shouldn't. I feel sorry for them, for the confusion that as young children they battle with.

Saturday night was my brothers big '40'!!! We went to his party which was a nice way to end our week from being in the hospital. Sunday was a R&R day. Much needed. Monday was clinic day and her numbers are dropping but good to go to school the next day. We had planned to wrap but of course the night got away from us. No wrapping. Tuesday was school day for Ashley, and work day for me. Do you know I can't even barely remember that far back. I'm losing brain cells somewhere!! We had Danielle's dance that night and we went to a girlfriend's after for a quick visit. 11:00 sure comes around quick. Oops. No wrapping again.

Wednesday was a lazy morning. I actually wasn't feeling well and Ashley and I played in my bed for most of the morning. She obviously didn't think that was very fun. In the afternoon we had our Christmas program for the kid's school. Well whatever makeup I went with wasn't there when I left. It was a beautiful program. The teacher that organizes and conducts the kids is truly gifted. The whole school sings like a choir, with so much enthusiasm that it brings tears to your eyes. I wasn't sure I would even make it through the whole program. I was very emotional just knowing that all 4 of our children were up there singing. These are events that are emotional as parents, because with a child with cancer they're like mile stones. I could barely see Ashley which I think was a good thing. I was just so happy that she could be up there with all the other children singing songs about their love for God and the birth of Jesus.

That just reminded me of an emotional moment on Tuesday night when we were at our friends house. Ashley pulled a wish chip out of bag of chips. She closed her eyes and wished long and hard. Brittney's mom leaned over and whispered "what did you wish for"? Ashley answered with "to get better". Well, that's pretty emotional words from a 4 year old. How sad that she has to wish for that.

Sorry for the mushie moment. We do have those. Thank goodness not too often or we'd be basket cases. Well Wednesday night was dance again. I was out doing groceries at 8:30 at night. That's the fastest I think I've ever done them. The store closed at 9:00. I managed to do some banking on the way back. By the time I was done putting the groceries away and tidied up it was 11:00 again!!! No wrapping again! I just don't know why the days are so short. If I could just have about 3 extra hours added at nighttime, life would be complete.

Thursday was clinic day again. As expected her numbers have come crashing down. She needs a blood transfusion. They asked me whether I wanted to have it done that day or the next, as she was at 79, 70 being the transfusion number, 120 being normal. I opted to come back in on the Friday so we had a day to prepare for it. We were having a potluck lunch at work with the office staff. Ashley was borderline neutropenic, so I let her go to school for the afternoon. I rushed off to work and managed to get half an hour shopping in after that.

Thursday night the kids were performing in the nighttime Christmas program. I stayed home to wrap. Of course I didn't do it. Why waste a whole hour and a half on wrapping when I could be napping on the couch! Wrapping did happen that night though. We started at 11:00 and finished around 2:00. Crazy but it had to be done.

Friday we went to clinic. Because we had dropped off all the paper work on the Thursday, they had the blood waiting for us. They hooked her up by about 10:00 and we still didn't get out of there until 12:30. Ashley's platelet's are down to 18 (should be over 100, and they transfuse at 10). We had the option of staying and tranfusing her, but opted to leave her until Monday and hopefully she would recover them on her own.

The secretary had called me on Thursday to let me know that Ashley's test's had been booked. They were planned for Jan. 14th. I asked if she could get them done any sooner and she said they were really booked up with the holiday's. We were very concerned. If we wait until Jan. 14th and then have her scans, then wait for results. Then they need to have surgical consult with Hamilton. They're expecting Hamilton to decline which would mean a surgical consult with Toronto. Well that's obviously too long. This tumor only took 3 months to appear. That would have left us somewhere in February. Not good! I asked Ashley's clinic nurse if she could not move these dates up, or we'd have to look at doing another chemo, which we'd prefer not to do unless absolutely needed. With live tumors leaving it unattended like that could have caused it to grow and the past 4 chemo's would have been wasted. She agreed and all of her tests have been moved up to Christmas Eve day. We're very pleased and thankful that she was able to pull that off. It will make for a very busy Monday, but well worth the peace of mind.

I rushed home from clinic and dropped Ashley off with friends. The Christmas party at our work for all the employee's started at 1:00. Managed to go and pick up Ken's presents after that and be home by 4:00. I'm getting really good at shopping quick.

Well today was a nice day. We started out with Ashley at dance. Nathan had hockey at 8:00am, but Ken was able to join us for her dance as they were doing a little mini Christmas dance. We had the camcorder going and of course she decides to do her own dance instead of the one they'd practiced. Typical. We celebrated Christmas with Ken's family tonight. It was alot of fun and the children were spoiled as usual. It ended pretty late and we weren't home until 11:30. Good thing tomorrow's another R&R day.

Well I'll let you know how next week goes. We have clinic and tests all day Monday and we're back in on Thursday as well. We'll enjoy Christmas in between, but this year hasn't felt like Christmas. I think we needed snow. That would have helped (and would have made Ken and friends happy. Snowmobile's are collecting dust and their not happy!)

Well I'm going to have to try to write in this journal more often. I didn't realise there was so much to tell you. This was longer than I expected. I'm going to go, but we wish everyone a very Merry Christmas. We all still have so much to be thankful for and we should cherish these holidays with our loved ones. Bye for now!

Thursday, December 13, 2001 at 08:10 PM (CST)

I think this may end up being a duplicate entry, just to forewarn you. I accidently pressed add in the middle of a sentence, so if you go to the history and see a little blurb just ignore :)

Well Ashley is in the hospital receiving her 4th chemo and as I understand her final of this particular treatment. She is her usual bubbly self and having a great time. Sometimes it boggles my mind that she can be so unafraid to go to the hospital after everything she's been through. We are very fortunate and are very thankful every day.

Well our weekend didn't go quite as planned. We received bad news. The little boy in Waterdown that I have spoke about, has taken his journey to heaven. He passed away on Thursday. It is so difficult to even imagine what those parents, and so many others who have experienced this, go through. We went to the funeral home on Sunday and it was very difficult seeing another innocent babe the victim of this horrible disease. The parents are doing ok under the circumstances. I feel like Ken and I were the biggest mess. The sorrow we felt, and to be honest the fear that we also felt when we lose another to this particular disease. Help us pray for the parents and family that they find strength in the days to come.

Well we checked into the hospital on Monday night and Ashley's happy. She's rooming with her buddy Rebecca. It's pretty neat that the ward tries to set this up for them. So far this week, Ashley has done crafts with a group of teenagers, Robert Munch the children's author came in and Chanda the toy poodle came and did a fabulous show. I guess this poodle, who I had never heard of until today, actually tours all over and has even been on shows like Regis and Kathy Lee. She was adorable and did some pretty impressive stuff. She was actually having an off day, but we were still impressed. Robert Munch was pretty impressive as well. He was taking kids out of the audience and coming up with some pretty neat and silly stories about them. They all enjoyed that.

Well we started the week asking for our meeting and yesterday ended up having an impromptu meeting in the hall. The oncologist just happened to stop and see how Ashley was doing and asked me a question and by the time we were done talking I realised that the meeting that we had requested had just happened. It was unfortunate that Ken wasn't with me, but plugging my ears just wouldn't have been appropriate :)

We at least now know where we are going in the short term. We are going to do Ashley's tests after this chemo to see if there has been any more shrinkage. He will then present Ashley's case to the surgeon's in Mac, but he is quite sure that they will refer her to Toronto as this is a very difficult surgery. The location of the tumor, being just below the heart, makes it necessary to have possible cardiac doctors available. He then would like to follow that with radiation. He is quite confident that when this is all done, she should be NED (no evidence of disease). That is good, but unfortunately with this disease, not good enough. It will return, not if, but when. So the challenge is trying something to hopefully keep it gone. We discussed the antibody treatment being done in NY. He doesn't want to commit at this point at recommending to sending her, but definately does not rule out that that may be her best option. He wants to wait to make that call until she has had all this done. Our biggest challenges lay in the near future. The biggest I feel is getting Canada to agree to do a 2nd transplant. In my e-mail to NY I confirmed with him that we needed to take that drastic a step, and he assured me today that it is a definate yes. Canada has never done two transplants on a Neuroblastoma patient. This is a BIG challenge wouldn't you say? Another young boy, who I'm sure you have read about in Smithville is also in the same predicament. He unfortunately needs Toronto to make this decision soon, as he is receiving too much chemo to hold him at bay while all these decision's are being made. With two cases here we are hoping and praying they will relook at the situation and reconsider. It is not even feasable that we could have these transplants done in NY as we would not be covered by any government. It would have to be personally paid for and we can't even imagine what the cost would be, but we know far out of either families capabilities.

So we are going to start in the new year to think about ways to fund raise to pay for Ashley's antibody treatment as that alone will cost around $200,000. SCAREY! I'm hoping all reading may have some wonderful ideas on how to go about this, as I haven't a clue.

Well, I'll let you know how the rest of the week goes. We're hoping to come out on Saturday afternoon. We have to get our Christmas tree up and catch up on the decorating. I'm nearly done the shopping which is a relief. Talk to you soon!

Friday, December 07, 2001 at 07:58 PM (CST)

Well it has been a fairly uneventful week. Saturday didn't quite go as planned. We slept in past Nathan's hockey game. We felt bad about that, but he didn't seem to mind. Then Ken took Ashley to dance. That didn't go too well either. She was so tired (she was up until 3:00am waiting for us to go to bed!). She decided she wanted mommy and she wouldn't go in and dance. Ken even went in and tried dancing with her, which I give him credit for, but that didn't work either. They ended up coming home early.

The Christmas party was fun, and the kids all got Help A Child Smile sweatshirts. They played games and won little toys. Danielle won a whoopy cushion, and Ashley scammed that and proceeded to embaress alot of people. It was quite fun. We had hockey for Derek and then from Nathan's birthday request, we took the kids to the Mandarin. This is obviously not a regular event as kids don't tend to eat as much as they should (except for dessert) at this resteraunt. This night was an exception. I had obviously starved them enough during the day that they actually ate lots and we had a really nice dinner.

Well, Monday had us back in clinic and the lady that does Ashley's finger poke asked after she poked if Ashley's hemoglobin was low (blood). She obviously knew something I didn't because sure enough she needed another transfusion. Her numbers had crashed again. I thought she would be on her way up not down, but I guess the chemo's are starting to take they're toll. What was funny though is Rebecca, the friend she has made at the hospital, was sitting there looking quite comfy. I asked her if she was here to stay awhile, and she said yes, she needed blood. Well I started to laugh and asked if the two had been on the phone planning this the night before. What were the chance's that the only kids getting tranfusions were Ashley and her friend. So we all spent the afternoon in clinic. It was a bit of a rush, as Ashley finished around 3:30 and the kids get home at 3:55.

Tuesday was fairly good. Ashley got to go to school for a whole day. I just warned her and the other kids, to not let her run or play rough as her platelets were quite low. 26, when normal is 150. Sure enough, just before getting on the bus coming home, she fell and hurt her knee. Nothing serious, but it just figures.

Wednesday was supposed to be clinic day, but we played hookie. I needed a mental day and we stayed home so I could catch up on laundry and the house. That afternoon a photographer from the Hamilton Spec came to take pictures of Ashley with Nella our VON nurse for an anniversay edition for the VON's. I guess it won't come out in the newspaper until January, but I'll let you all know when.

Thursday Ashley went back to school for another full day. Wow, 2 whole days in one week. I was quite confident her numbers should be on the way up, but I still warned her to be careful. Why do I bother. She came home with another nasty bruise on her knee. I told her I was going to send her in body armour next time. She didn't seem to think that was a good idea! Thanks to a great friend, Linda, I managed to go Christmas shopping yesterday. She was here to see the kids off the bus and stay until I got home. I managed to get quite a chunk done. So I am finally feeling a little better that Christmas is right around the corner. I was starting to feel a little panicked.

Well we were back at Clinic again this morning and Ashley had great fun. There was a class from a school (I think Assumption High), that were set up in the play area. They were doing crafts with all the kids, and Ashley had a great time. She painted some Christmas ornaments and made some jewellery. The student who was helping her was very nice and Ashley gave her a big hug when we were leaving. It was really sweet. End result from clinic being her numbers are now back to normal and she is ready for her next chemo. We will go in again Monday morning for a physical and then check in Monday night for her 4th chemo. This is her last chemo that they plan to do, so they had better give us some ideas next week as to where we go from here. The good news for chemo week, is her friend Rebecca is going in on Monday night as well. If I didn't know any better I would swear Ashley plans all this. She so enjoy's this little girl's company.

Well our weekend ahead of us should be fairly quiet. There is babysitting in our church tomorrow for all us mothers who still need to Christmas shop. Ashley's numbers are good enough that she can go. She'll enjoy that, and I'll enjoy getting more done. Well next week should prove interesting if we manage to get that meeting. I'll keep you all posted if something happens. Hopefully we have no repeat's of the last hospital stay. Rebecca and Ashley are going to have to behave themselves with their lines or I think we may drive some of the nurse's to early retirement! Talk to you soon.

Friday, November 30, 2001 at 10:10 PM (CST)

Hi everybody. I guess I made it pretty obvious I had a bad day on Monday, and I'm sorry for rattling. I'm feeling much saner now, so I won't vent today.

Ashley got to go to school on Tuesday. And as I said, having 4 totally sends me for a loop. The kids were running down the driveway while the bus waited. Poor Ashley was trying to put her knapsak on as she ran and nearly toppled over. It was very cute and Danielle came to the rescue. I actually got to go to work for a bit. Managed to pay a few suppliers, that I'm sure they're appreciative of. :)

Wednesday was a very busy day. I started my day by sending an e-mail to my clinic nurse telling her that I appreciated her effort to try and pacify me on Monday, but told her why I was upset. I told her that I had come to respect Ashley's new oncologist and so that day had been even more disappointing because I just never expected him to brush us off. Ashley then had her very first school birthday party. She was sooo excited. This mother had bravely invited ALL the girls from the K class. I think maybe 16 girls were there? Anyway she had a great time, minus a temper tantrum when we wouldn't let her open the gift she'd given. I guess it doesn't make much sense to a child who's never really been to birthday parties. The main thing is I won the battle. Yay me! (As everyone knows this doesn't always happen).

We had to be back at the house by 3:30. Nella our VON was meeting us and also Claire the nurse from the hospital that generously comes to people's houses to help them sort through different society's etc. for kids with cancer. (She's also the one that went to the school for the kids). Well it started out hectic as Ashley decided she wanted to play on the computer and of course the computer wouldn't co-operate. So poor Claire patiently waited while I was up and down like a yoyo (I know your all smerking, because I always do that), but that computer just kept locking up!! Finally I sat and in walked the kids. Well you can imagine the chaos now. Then the phone rang, and wasn't it the oncologist that I had asked for a meeting with. And then in walks Nella. The word chaotic does not even describe those 10 minutes or so.

My discussion with him made me feel better. I guess there are procedures that must be followed with all the oncology doctors, and because he was not on clinic that month, he could not have a meeting with us without the clinic doctors consent. It was a long story, but I understood, even though both he and I agreed the system needed refining. We also spoke about the clinical trial in Toronto. He explained that Ashley was not ready for a Phase I trial. To put a child in a Phase I trial you must of exhausted all other methods of treatment. Basically meaning that she is beyond treatment. A Phase I trial is basically using the children as ginea pigs to figure out dosages etc. Obviously still with the hopes that the child will respond. The doctor said we are obviously still a ways from that. So now I feel better knowing that. I also found out the trial was not actually open yet as it has run into some glitches and does not expect to open for minimum a few months. Possibly by then we may need it. We'll hope and pray not.

So things got better after that. Claire and I were able to continue our discussion (in between being interrupted a million times by three pesky kids, Danielle was now at dance with Ken). I now have lots of papers to fill out. She is a great help and a tremendous listener (and very patient). If your reading this Claire thank you!

Anyhoo, Thursday was clinic day and as I expected Ashley's numbers had crashed. She is very neutropenic, so no school this afternoon. Platelets have dropped considerably, but not low enough for any transfusions.

Friday, today has been busy. Even though Ashley was neutropenic we had to go shopping. It's Nathan's Birthday tomorrow and his party is tonight. I had to pick up his cake, which a friend has been making these cool cakes for years. This years is a monster truck. Then we had to pick up party supplies. Stopped to buy her and Danielle some badly needed clothes. And then back to pick up the very boisterous boys to take them to see Monster Inc. We have survived the evening, barely. Only kidding. The car drive was the worst. Hyper, hyper, hyper! So that ends our week. Tomorrow is going to be a bit crazy. Hockey at 8 am and dance at 9. Ashley's christmas party with Help A Child Smile is at 12:30. Just to let you know that this is an organization opened by a wonderful person Lyn who lost her son years ago. The organization holds events throughout the year, the main being Christmas. Full of fun for the on or off treatment children and siblings. They are all spoiled silly, so obviously our kids enjoy to go!! They are also the ones that sent us to Florida for our Disney Trip. So if ever you see any advertising for donations, think of these few things I've mentioned.

So much for keeping my journal entries short from now on. Oh well, thanks for reading, and by the way we can't thank everyone enough who is signing our guest book. It is very encouraging to read your notes to us and know how many people are concerned and pray for Ashley. We need lots of those prayers. They worked last time. Thanks again, and we're back in Clinic on Monday. I'll let you know next week how she's doing and how her Christmas party was. Bye for now!!

Monday, November 26, 2001 at 11:13 PM (CST)

Well now that I have the journal up to date my entries shouldn't be so long winded. I hope you've all survived the massive reading. It's actually been pretty hard to minimize everything so we don't keep you all reading forever.

Today I left for clinic with my hopes a little higher than normal. We had found out on Saturday that a new antibody clinical trial is opening up in many different hospitals. This is a similar form of the antibody treatment that is being done in the states. The good news is one of the Hospitals running a trial is Sick Kids in Toronto. This is very exciting news!

So I took Ashley late to clinic knowing that it would be crazy busy. And it was. We got there around 10:30 and didn't leave until 1:30. I spoke to Ashley's clinic nurse today and asked her to see if she could set up a meeting with a couple of the Oncologist doctors. I explained that there was a new trial in Toronto and they were only accepting 18 - 24 patients, so time was very important. I also needed to speak to them about other options as her 4th chemo was soon to be here and we have no idea where we are going from here if she did not fit the criteria of the Toronto study.

She called the doctor to try and set up a meeting and she came back to tell me that he was going to be on the ward in December, and when we went for our next chemo he would speak to us then. Her next scans would tell us more of possible future plans. Well as you can imagine, my bubble was burst. I was immediately upset and angry. I was particularily upset with the fact that we have a child who we have been told is terminal, unless we have a miracle, and he doesn't have enough time to answer a few questions, or speak to another doctor about a possible treatment. Ok I'm more than slightly ticked. I tried to hold myself together and replied that ok I'll bypass them then. If I have to go to Toronto and speak to these doctors myself then I will do that. She knew I was upset and tried over the next hour to come up with other possible solutions for me. She asked if I would maybe like to speak to the new doctor, which I replied no. I would like to speak to the doctors who have been handling her case already. I wasn't trying to be difficult. I just was flabbergasted that they couldn't take the time, even if just to passify me, to spend a few minutes with me one day this week.

Ok so you can tell I had a bad time in clinic. It ended better though. She must have gotten a hold of one of the doctors and he came to see me, and told me he would look into the new study and send off Ashley's info to see if she met the criteria and if it was in her best interest. Yahoo, some results. I still haven't had my meeting, but I'll work on that later in the week.

On a better note Ashley's counts were great and she can go to school for a whole day tomorrow. If she's able to wake up. She was up until after 11:00. Where does she get her energy from?? Well I'd better get going. Having 4 to get off in the morning throws my whole morning off. I'm still not used to it. I'll let you know if I've heard anything later in the week. She's due back in clinic Thursday. Goodnight!

Monday, November 26, 2001 at 09:40 PM (CST)

Saturday, November 24, 2001 at 08:24 PM (CST)

Well we headed off to clinic Monday to get her numbers done and to find out her results. It was crazy busy in there. Her numbers are good enough to have her next chemo. The doctor when she came in to do Ashley's physical, didn't realise I was there for results and didn't even know if we were having chemo. She said yes we were coming in for chemo that night and yes the tumor had shrunk so they were going ahead with the next 2 chemo's. She didn't have anymore of Ashley's results, but I could get them while we were in during the week.

That was a little frustrating, but I will find out soon enough. It was a sad day for me. One of the little boys who has Neuroblastoma, and lives in Waterdown if you've read the story in the paper, is very sick. I don't know his mother very well, as we haven't really seen each other long enough to talk, but she was in clinic that day. I asked her how her son was doing, even though I could see he was extremely unwell, and she told me he was off treatment. That was a shock to me. I guess he hadn't even made it to transplant. He relapsed after his surgery and nothing was working to keep the cancer at bay. It had grown to twice it's original size. I cannot tell you how difficult it is to see what this little boy is going through, knowing that he will be called up to heaven soon, and not knowing the right words to say. There are no right words to say. I am devestated for them. I can only pray for the strength for their whole family as they go through this very very difficult time.

That night we checked in for Chemo #3 and we had a private room. Wow! You normally only get those rooms when you are either neutropenic or very very ill. I won't unpack my bags, for I'm sure we won't be in this room for long.

Sure enough, Tuesday came and we were being moved to another room. I managed to get us, two moves later, into a room that the other side was empty. I suggested to the nurse's that maybe Rebecca when she checked in for her chemo tonight could be put there. So they did. I had a busy day. I have had to start trying to find a solution to a problem Nathan has. We have thought up until now that he required more attention because of the stress the family has been under. He has habits, that have been continuous for years, even though they are different each time. It's a long story to explain, but the short of it is that a few people, when hearing or seeing his problem have wondered if he has Tourette's. We took him to the family doctor, who suggested a psycologist first. We had obviously ignored the suggestion of tourettes, as it seemed too far fetched. I was trying to get in touch with this psycologist for two weeks to have him looked at. This weekend had been the tip of the iceburg. He was completely out of control with the habits. I need answers now! I finally by the end of the day, had spoken with the psycologist, and he has suggested that we should have him checked for Tourette's. He said if he was under that much stress, we would see much more severe signs. Disrupted sleep, poor school grades etc. So he has suggested we start checking for physical problems first. So off we go! I have to call my doctor to refer Nathan to a pediatrician. Oh what a challenging life we lead! Thank goodness tomorrow is a new day!

On a good note, Claire who through the hospital and Ashley's VON nurse Nella, went to the school to talk to Ashley's, Derek's and Nathan's class. They ran out of time and will do Danielle's next week. They were very impressed with all the questions the class's had about Ashley's cancer. I thought it was pretty neat that the kids would learn and be able to ask questions that maybe they wouldn't ask at home.

Well Wednesday proved to be a very interesting day. When I was getting Ashley dressed to go to the playroom, we had a horrible thing happen. I had changed her shirt and when I went to stand her up to pull up her pants, her IV line got stuck on her table and yanked her hickman line. This is a really bad thing! She screamed and I immediatley started applying pressure thinking we were going to go through what we had been through before. Except I, in my panic was thinking she was already getting her chemo, and was scared silly that the chemo was pouring all over her. Thank goodness I came to my sense's quickly, and realised her chemo hadn't started yet. The nurse's came running when Rebecca's mom went to get them, and they checked her line. It had definately had a really good yank, but it hadn't come out. Thank goodness!! It was still pretty painful for Ashley, but they quickly put another bandage on. The other one had fallen right off. They spoke to the doctor and he ordered a X-ray to make sure it was ok internally. If it had come out, she would have been in surgery within 24 hours having it replaced. I wouldn't want to put her through that again.

Our nurse didn't appreciate us in that room that day. It was Rebecca's turn in the afternoon to give her a shock. She was having a 24 hour chemo and when she was asked if she could leave the room, she said your really not supposed to, but if you go no further than the playroom that should be alright. So that afternoon, I took Ashley and Rebecca to the playroom. (Rebecca's mom had left already). One of the child life workers offered to play with them, so I went back to the room. Not 15 minutes later, I see a nurse bringing Rebecca back and all of a sudden all this commotion going on. She had broken one of her lines in the playroom. Major oops! They had to change her lines, and thank goodness it wasn't her chemo line that had broke. When her line broke, she bled back out the line and onto the carpet. They had to close the playroom. It was considered a chemical spill only because the blood would have had chemo in it and the carpet was going to need replacing. This was definately not a good day. The poor nurse got in trouble for letting her out and Rebecca was told she wasn't allowed to leave the ward anymore.

The rest of the week went fairly uneventful. Ashley had lots of visitors. Brittany came for a day again, and they had another magic show which I guess had even the adults totally entertained. (I came late that day). Friday she needed a blood transfusion. Her hemoglobin had dropped to the lowest it's been in over 20 months. Disappointing, but I knew it would happen eventually.

Friday night I slept with her as she had been asking since Monday if I could stay with her. We were having a girl's night. Well it might be last girl's night for a while. She was up until 1:30 am. We were painting nurse's nails with new glow in the dark nail polish that I had just bought her. It's really neat. Our nails really did glow! Being night time the nurse's were having a hoot with this. Thank goodness we're going home tomorrow. I need a good nights sleep. I probably had about 2 hours between the nurse's coming in and hearing all the noises. I can't sleep as soundly as Ken.

We checked out just after 2:00 and all was well. We were leaving with Ashley neutropenic which was a first. It will be interesting to see how her numbers do next week in clinic. We'll let you know. I'm trying to set up a meeting with the doctors to get all the results and discuss our next steps. Let you know how it goes!

Saturday, November 17, 2001 at 07:44 PM (CST)

The weekend and Monday went fairly quickly. We were back in clinic Tuesday. She also started all her test's. Her platelet's are taking longer to come back this time, but she she still isn't low enough to need a transfusion. We just have to watch that she doesn't play too rough. Bruising and internal bleeding are much easier with low platelets. By Thursday we had all her tests done, but they want to redo her MIBG scan. This week she has had a Bone scan, MIBG scan, CT scan and ultrasound.

While we were having her CT scan done the doctor when injecting the contrast couldn't get one of Ashley's lines in her hickman to work. I couldn't understand how anything could have happened to it. We had used both lines on Tuesday with no problems. This caused them to be quite concerned. They managed to use her other line with no problem and I told them I would have clinic check her other line in the morning.

She had to wait until almost 1:00 for her ultrasound, and she had had nothing to eat or drink. When we were all done I took her to the cafateria for lunch. We had a sort of sad conversation. She admitted to me that she wants her hair back. She's decided she doesn't like being bald. She wrenched my heart. I wished I could take all this away from her, but I can't. She dropped the subject fairly quickly and I took her to see her teacher from her old JK class. She was so happy to see Ashley. She was surprised to see her without hair obviously, but she handled herself very well. I was watching Ashley watch her for her reaction. She is older and wiser now, and is watching for peoples reactions to her baldness.

Friday was another day off for the kids. (They are just having just far too many days off!). The school is setting up for a Bazaar they have every year, so the school is closed for the kids. So I decided instead of getting a babysitter, I would take them to see Ashley getting her test done. So they went to hematology with us for Ashley's finger poke. Of course they got to have a treat as well. (I'm sure they're thinking they should come more often now!). We took her to nuclear so she could have her MIBG scan done. They watched her lay on the machine, and it came down to just about 2 inches off her face. The kids were pretty impressed that she was able to lie still for that long without moving.

We headed up to clinic after that. The kids had fun with some of the girl's from Camp Trillium. They played games and did crafts together. I asked one of the nurse's to check Ashley's lines and when she flushed them, they both worked fine. What a relief! The doctor down in CT obviously had done something wrong. All her numbers are good, so she's ready for her next chemo depending on the results from her tests. We'll get them on Monday. So we'll hope and pray for good results. Hopefully once the results are in we can sit down and talk to the doctor's and make a plan.

Our week ended on a fun note. We had alot of fun at the school bazaar on Saturday. They had so many interesting things to buy. My neice Janine had cleaned out the basement of all the toys the kid's didn't play with anymore, and we donated them to the used toy shop. What a great way to get rid of good toys that sit around forever.

Ashley had the best time of all the kids. There were two things she enjoyed. One of the teachers was having his head shaved. The school kids had raised over $1000 for him to shave his head. So she wasn't going to be the only bald one in the school. Over and above all that, the principal if $2650 was raised would shave his head. That wouldn't happen until the end of the night. She didn't get to see that one happen.

They also had a silent auction room for kids. She wanted a couple of things in there, so we put her name down and took her back before it closed to make sure we didn't have to go higher on her bid. She won her two things so she was pretty excited.

So if she gets to go to school next week she'll see two more bald heads other than her own. And all for a good cause! The school raised over $48,000. Incredible! It will go towards our building expansion fund.

Well Mondays coming soon enough. I'll let you know the results when we get them.

Friday, November 9, 2001 at 10:12 PM (CST)

When we left after Ashley's 2nd chemo, she was her usual self. No signs of nausea. So we didn't have her anti-nausea perscription refilled. Boy did we regret that. Sunday morning she woke up very sick. She vomitted all day. She felt well enough to try and eat and drink, but nothing would stay down. We tried gravol, but that didn't stay in long enough to work. By nightime I knew she was getting dehydrated. She was getting very lethargic and hadn't been to the bathroom since early morning. I called the doctor and found a drug store that was open late to fill the perscription. She woke up in the morning much better. She'll be on this med. for 2 days, so hopefully when she's done she'll be over the nausea.

My Step Father Stan was having surgery Monday to have cancer removed from his lung. (This is his second operation). So Ashley was well enough to leave with a friend and I took my mother to the hospital. Stan did very well. Surgery went great, and he looked much better than the last time. It was a long day. I managed to get my mom home by 8:30 or so.

Tuesday was clinic day and Ashley's numbers were good enough that I could take her to school for the afternoon. This was going to be the first time her classmates would see her without her hair. The older kids would remember from 2 years ago, but it would still be a shock. She was very brave and after a few minutes of clinging, she went off to play. I found out later that nobody made a big deal out of her hair loss. I'm very appreciative of all the kids that were sensative enough to know not to mention this to her. I guess most of them because of knowing Ashley before, love her for who she is and not how she looks. That's pretty impressive for a grade school.

I quickly picked up my mom and took her up to the hospital again. Stan is still doing well. He still looks great. His doctor is quite confident he has got it all this time. This is always a good thing!!

Well Wed. Ashley woke up sick again. She had finished her medicine the night before. She was due in clinic Thursday and I was hoping she would keep enough liquids in that she wouldn't dehydrate on us before then. I managed to pick up my mother at the hospital and get her home. Ashley only threw up once through all that. Stan's coming home tomorrow. So the back and forth will soon be over.

Thursday at clinic they hooked her up to give her fluids and gave her IV anti-nausea med's. She is very neutopenic, so they considered admitting her. They weren't sure if her nausea was from chemo or if she had an infection coming. They decided to wait 24 hours and sent us home with 5 days of her med. We went straight to pick up my mother and took her to the hospital for the last time. We took Stan home and managed to have him settled by 4:30. It was a busy day!

Today was a better day. Her medicine is working and she is back to eating and drinking well. Ken has been off work for a couple of days sick. We have been hoping he won't give it to Ashley, seeing as she is very susceptable right now.

Tonight when I checked my e-mail's, I had a response from a doctor in NY that I have been corresponding with. I'm not sure if I've previously spoke of the clinical trials in the states and if I have bare with me. They are showing some positive results with an antibody treatment. Not alot of info on relapsed patients but we can only remain hopeful. I've been e-mailing this doctor with some questions and he was nice enough to respond with his own questions. Tonight he responded with his thoughts as to how he would treat Ashley if she was his patient. It was a bit of a shock. Basically he would start over. Chemo, surgery, radiation, transplant, anti-body treatment and oral medications to finish. Wow!! It is obviously overwhelming. We could not have this whole procedure done in the states, as you could well imagine the dollars, so we need to speek to our oncologist's and get their thoughts. A second transplant, however much we don't want to put her through it, and even with the dangers involved, sounds like a step we may very well have to take. In the states most children with their treatments, receive what they call back to back transplants. Our children in Canada only receive one. I need to do more research on this as to why Canada is different. My thoughts are that if the children in the states can handle 2 transplants why can't our children. This e-mail has given us alot to think about. We are even more anxious to have her tests done. Her tests are scheduled for next week. I'll let you know how it goes.

Saturday, November 3, 2001 at 11:17 PM (CST)

Hi everybody, well we're about to check in for Ashley's 2nd round of chemo. Ashley's hair started to come out on Friday. When I told her, bless her heart, she said 'finally!'. I had convinced her for the past couple of weeks that having no hair was going to be pretty cool. No more washing her hair, brushing her hair, or no more tangles to say ouch to. She was pretty convinced that this was going to pretty neat to have no hair. Thank goodness she is still fairly young. We obviously had a hard time with it, but because I had spent so long convincing her that this was good, I had an easier time of it than Ken. The kids were pretty good with it. Derek was the most upset, and I explained that if we showed her we were sad, she would get sad. He understood that and pretended to be happy for her.

Ken and I went to a seminar on Friday night where a Doctor was speaking about beating cancer. His seminar was on something called 'Endostatin'. I can't explain this to you, because even though it was supposed to be in lamin language, it still flew over my head. End result being, there are clinical trials being done in the states, and we asked him on question period, if Ashley's case would apply. He said relapsed Nueroblastoma was a very difficult cancer to beat but to contact a certain doctor in the states to see if he could try and put Ashley on the trial.

Trying to find new methods to control this cancer is very scary. Obviously we can't send her for this study if they have never tried it on her type of cancer, or have any results. It's unfortunate. The one good thing is for many types of cancer, this new method is looking very promising and I am excited for the people who it will pertain to.

Ashley's counts and everything were ok, so we are a go for tonight. This week is halloween, so we have to take her princess costume with us.

First day of chemo, Tuesday, went well. We asked the nurse if after her chemo on Wednesday if she could be let out for a few hours to go trick or treating with her brothers and sisters. She came back with a yes. Ashley is very excited!

On Wed. Ashley's 2nd day of chemo, we had a parade they asked if we wanted to be in. Niavely me, thinking the kids were going to show off their costumes, took her and soon found out this parade meant mounds of candy. The main floor of the hospital was full of people giving out candy to all the kids in the parade. It was overwhelming! When she was done, she had sooo much candy! A TV crew was in filming and she was feeling pretty grumpy and wouldn't talk to them. I found out later that they did put her on anyway. Too bad I missed that. We took her out for Halloween that night and she had great fun.

Her hair now is looking like a very bad hair day. We have to change her sheets a couple of times a day. Her clothes and ours are covered. Because her hair was so long, it weaves through everything. We are now at the stage that we can't wait for it to be all gone.

Thursday was fairly uneventful. Ashley's friend Brittany came and spent most of the day. She really enjoyed that. They saw a magic show and then played in the playroom. Later, after lunch, we took the girls for a walk outside. That was interesting with her pole.

Friday, she is still feeling well and her new friend that she met in hospital, Rebecca, is in for her chemo. Rebecca came over to Ashley's room and it was very cute. They spent the afternoon together. Rebecca and Ashley got their chemo's together in Ashleys room. Lots of volunteers today. Ashley's room became the party room.

Ted, a friend, came down and informed us he was a new daddy. They had just had another baby boy. All was well, and he wanted to let us know seeing as we were in the hospital already. So after supper, I packed Ashley up and we went up to see him. Ashley was so proud to be holding this 4 hour old baby. She wasn't going to give him up!

I asked the doctor before I left on Friday, where exactly Ashley's tumor sits. I had a girlfriend come over Friday night and we spent hours trying to figure out exactly where on the anatomy it sits. (I'm learning far too much let me tell you!) We did learn, from looking at a picture I was finally able to print, that it is in a very difficult spot. The doctors had told us this, but seeing it on a picture was much easier to grasp. I understood after seeing this picture how the radiologist doing her needle biopsy had accidently hit something. I don't know he could of not! I'm glad that I am finally able to have a mental view of it. It makes it easier when speaking to the doctors of possible surgery and radiation treatments.

So Saturday, everything went well and they are going to let us go home. I spoke to her oncologist today, and he has said we can't look into further treatments until she is tested for results of these two past chemo's. So we have to wait until she has all her scans. Patience has definately become a virtue! So we'll head home and wait until next week to see when her scans are booked for. Talk to you then!!

Thursday, October 25, 2001 at 10:47 PM (CST)

I'm going to try not to bore you with all the details of our trips to clinic. We were there on the 19th and she was very neutropenic, so we had to keep an eye out for fevers. I was able to sit and discuss a few things with the doctor, but came away with few answers. There are very few options about possible future treatments to keep this cancer gone. We discussed some options in the states. An antibody treatment in NY sounds like a possibility, but we need so much more information. We also need to see how she responds to these chemo's and discuss our options again. She still hasn't needed any transfusions, which is great. By Monday her white cells had increased enough that she wasn't neutropenic, and she could now go to school. She was very pleased. A whole day at school!

Our week went fairly normal, busy as usual. Thursday she was back in clinic and her blood counts are great. She has recovered enough that she is ready for her next chemo Monday night. We have always had our chemo treatments on schedule, but I am finding out that this is not a normality. Some kids, it seems like alot to me, take longer than Ashley to recover their blood counts enough to have their next chemo. (This means their platelets and hemoglobin). So they have to wait until their numbers can handle their next dose. Even through Ashleys treatments on original diagnosis, we were never delayed from poor counts. We are very fortunate.

My kids are off school today and tomorrow. So I had the whole gang in clinic. When I come in with them all, our tiny little clinic gets much smaller let me tell you!

I'm going to sign off, it's late and I've probably bored you all. I'll let you know how her next chemo goes. Oct. 29th she goes back in.

Goodnight!

Thursday, October 18, 2001 at 08:58 PM (CST)

Well the procedure for being admitted to the hospital for chemo is starting your day with a trip to clinic. Ashley has a finger poke to determine her counts and then we see a doctor for a physical. I was fairly impatient that day. It was so busy in clinic and I really wanted Ashley to be able to get at least a half day in at school. Not knowing how she was going to react to the chemo, I didn't know how long she would be before going back. I tried to bypass them doing a physical, because they had checked her a few weeks earlier, and because she hadn't been receiving any treatment there was no reason for her to be physically incapable of having treatment. No go, we had to wait. I have to learn again how to be patient. We were there at 8:45am and got out about 12:40. Of course she was fine, and they said see you tonight. We were to check back into the hospital at 8:00 that night. They would hook her up to give her lots of fluids before she would get her chemo the next day. I quickly took Ashley to school. The teacher was glad to see her. She came home on the bus like all the other little kids. Packing up was a bit confusing. We haven't done a hospital pack in a while. She was actually excited to go. We had no problem checking her in. She had no pokes, which she was glad of. I suppose that Hickman is coming in handy after all. Ken sleeps at the hospital nights so I came home to see to the other kids.

Wednesday Oct. 10th was her first day of chemo. All went extremely well. We were surprised, but the actual chemo only took about an hour. It was administered about 11:30 - 12:30. So she was room bound for the 1 hour and before and after she could do what she wanted. So away she went. Playroom, playing with volunteers, crafts. They were giving her anti-nausea medication and it seemed to be working. She wasn't really interested in too much dinner, but she wasn't sick. She partied well into the night, as she does most nights. She keeps Ken up until at least 12 or 1. You'd think getting powerful drugs put into you, that your body would at least get a little tired. She defies the norm I think.

Anyway, the rest of the week was very uneventful. Thursday - Sunday were exactly the same. She was still awesome. No sickness or any residual effects. She had a new roomate come in on the Thursday, and she was having a ball in the hospital. They were having movie nights with popcorn. Playing games together. It was great. They were a new diagnosis, so I think it was great they could see Ashley getting the chemo and reacting as well as she did. Unfortunately for that little girl her chemo did make her sick. So the playing panned out by the end of the weekend. I'm sure she was glad to be seeing us go by then. Ashley just had far too much energy for her by then.

The hospital normally keeps you in until the next day following the last day of chemo, but because Ashley was so well they released us the night of the last day. We unfortunately ended our stay with a little upset. It's been so long since we had to give Ashley needles every night, that when they informed us we had to start doing that again we were a bit surprised. Then we realised that to give Ashley the needles we needed a 'insuflon' put in. It's like a tiny little shunt. She gets poked with that when we put that in, but when we give her the needles everynight, she doesn't feel them. They go into the insuflon. So it's a good deal, but try explaining that to Ashley. She was trying to be good about it, but we ended up in quite the battle. We ended up having 3 nurses in. Two to hold her and 1 to put the insuflon in. Not good! To top it off, the 1st insuflon was a dud. It wouldn't go in. So they went and got another one. The poor thing, but they had to try again. Another dud. What are the chances. Well by this time the nurse is nearly in tears for subjecting Ashley through this. They went and got a brand new box, and this time it went in no problem. This was not a good way to start our new regiment of treatments. In 7 days this thing has to come out and a new one in. That should be good! Oh well, we'll deal with that then. Because she had gotten so upset, she got a horrible headache and threw up. We were already unhooked and just waiting for Ken to come, and all of a sudden she's getting sick. I was really hoping it was because of the upset. She seemed to be fine shortly after we got home.

I should probably explain why she gets the needles. The chemo blows her white cells away, which are the cells that help you to fight infections. When you see me type that she is nuetropenic, that means that her white cells are so low, that if she comes in contact with anyone who is sick, she stands a better chance of picking it up. If she gets sick when she is neutropenic, and develops a fever of 101 or higher, we are immediately admitted to the hospital and she is isolated until she gets better. These needles are a medication that helps the white cells to reproduce and come back quicker. I hope I explained that right. If I didn't I'll let you know later.

We of course came home with all her new med's. This of course has been a while. She's not completely thrilled at taking them. Monday was difficult getting her to take them. Some of them 4xday. The worst was giving her the needle. There was no way she was going to let us. It was an emotional night. All of us shed a few tears over that one. We hated having to be putting her through all this again, but we had no choice. Try explaining that to a 4 year old. Even if she is more mature than most. She finally let us do it, and it really didn't hurt. So she's o.k. with it now.

Clinic was on Tuesday the 16th. Her numbers had dropped, but she still didn't need any transfusions which I was glad of. The nurse warned me that by Friday, I should be prepared for her to be getting a transfusion. I was surprised her numbers would drop that drastically. I was able to take Ashley to school that afternoon. The teacher was really surprised to see her and looking so well.

Wednesday was an interesting day. We had an appointment to see a hairdresser who worked for 'Wigs for Kids'. We knew Ashley would probably not want a wig, but Ken wanted to find out if we could in any way salvage Ashley's hair to make her her own wig. Before going there we stopped at her VON's house. This gal was Ashley's VON nurse last time round and is also a personal friend. It made the transition a little easier to see a familiar face for bandage changes and new insuflons to be put in. She needed her Hickman flushed and her bandages changed. We got that done and off we went to the hairdresser's in St. Catherines. She was completly uncooperative. She wanted nothing to do with this guy. So we found out that using her hair was a no go. You needed a minimum of 12". We measured her head anyway, just incase in the future she changed her mind.

Thursday was a big day for Ashley. This story is a bit chokable. For us anyway. In the beginning of September, just after school had started, Ken had a discussion with the principal. He had mentioned it was unfortunate that this school didn't offer JK as it would have been nice to have all our children in the same school. He also said to him, that if Ashley did relapse it would be even more unfortunate that she would be in a different school as the christian community had already gone through this once with us. The support was completely overwhelming, and all the children in the school knew who Ashley was and her story. He responded that if it did come back, he would see if he could make it happen.

Well at that time, obviously we were still hoping for results in our favour. When it was confirmed that she had relapsed we didn't know the principal was already putting the wheels in motion. I just happened to call the school on Tuesday the 16th, and the principal answered. He informed me the K-teacher, the staff, the board and the education comittee had unanimously agreed to put Ashley in the K class. They wanted her to be with her siblings and all the other children who have known and prayed for Ashley for so long. That was such a blessing to us. We were sad also, for the school that Ashley was going to was wonderful, and the teacher was great, but having our children in one school outweighed these. We let Ashley make the decision though. So she went to school with all her siblings on Thursday morning. It was really a cute sight. Her back pack was so heavy with everything she wanted to take she couldn't get on the bus. Danielle had to pull her up by her coat.

She came home at the end of the day, and she had had a great day. I could tell the minute she came in. She was in a great mood. Not argumentative, very helpful. It was like she had matured on me. She just seemed so content to me. That's the only word I could use to describe her mood. So we sat her down to make her decision and she wanted to carry on going the Danielle's school, she said. "But I'm going to miss my other teacher, can we go and visit her sometime?". I assured her we would and we let the other school know. For us, we were content with all our children being under another of Gods roofs.

Monday, October 8, 2001 at 11:00PM (CST)

I'm sorry that last posting was a little sad. I'm quite sure you will find we'll be much more upbeat from here on as we resume our hospital life. It shouldn't take too long to adjust. We went back to clinic on the Monday Oct. 1st, and spoke to the doctor again. We were told her bone marrow is clear, which was a huge relief. He then said he doesn't want to wait any longer and would like to go ahead with chemo. He said we would do 2 cycles and then check her response. If she has responded well, they will give her 2 more and then we don't know. We'll discuss it then he said. It sounds frustrating, and I suppose it is, but I understand that so much hinges on her response to the chemo and if we can get rid of it again. Depending on how she responds to the treatment, determines our route for new treatments. It's definately not nice, not knowing what we're going to be doing 6 weeks from now.

Well we also had to discuss Ashley's teeth. My girlfriend, who is a hygenist, was concerned that her two front teeth were rotten. You can see in her pictures that they are barely existant. Well, if her teeth are rotten, that's a big opportunity for bacteria to grow. So I had to ask the doctor if her chemo should be postponed until she had these seen to. He wants to admit her next week Tuesday Oct 9th, so that's hopefully enough time to check her teeth.

I was also concerned that it had been since July since her last full set of tests. I wanted definate confirmation that we had not had any more new growth's since the last scans. They would try and get all these test's done before next Tuesday. (It's going to be a busy week).

Tuesday was interesting. She had her bone scan injection at 8am and her dentist appt at 9am. Then back to the hospital for 10. I felt like a yo yo. The dentist said her teeth weren't rotten, but they were dead. So we had to try and get them out before chemo. I took her to school after that so she could have a few hours with her class. She loved that! So Wednesday, we let the kids play hooky and we went and had our family pictures done. I can't wait to get them, they turned out awesome! After pictures we scooted them all to the dentist. She had to go and see a special dentist who used sedation. He booked Ashley's appt. for Friday morning 7am (eeek). Bad news was he couldn't sedate her because she had already been sedated recently.

Thursday she had her MIBG scans, CT scans and X-rays. Friday she went and bravely had her teeth pulled. They gave her something that made her happy, until the teeth were coming out!, and then she was happy again after. I thought she would come home and sleep. No such luck! We had the hospital call around 12 and ask if she could come in right away for another MIBG, so we scooted her down, dopey and all. I tell you that was a really busy week. Over and above all that we had Danielle's dance on Tuesday night, Wednesday night and Calvinettes on Thursday. Friday is Cadets and Saturday hockey. Yahoo!! We're having so much fun!!

Thanksgiving was enjoyable. We went to Ken's family first. Enjoyed some yummy food and then by 4 scooted over to my brothers for more. By 6 I was asleep on the floor, and Ken was asleep on the couch. We're such good company! Mind you that much food is enough to put anyone to sleep. (except our kids of course, who don't seem to understand the concept of tired and sleep). Monday was our Rockton Fair day, which is the one fair every year that we make sure we go to. The kid's enjoyed themselves, and it was especially nice to see Ashley having a great time. We have no idea how she's going to react to this chemo, so we wanted her to have as much fun as possible on her last day.

Sunday, September 30, 2001 at 10:15 PM (CST)

So surgery day is here. We explained to Ashley what they were going to do (in very simple terms). We told her she would be sore and they would give her medicine to feel better. Her response was 'o.k. How many sleeps will I be there and will I be able to go to dance after?' Her life revolves around how many sleeps until school and how many for her dance class that she goes to on a Saturday morning. She's learning tap and jazz and loving every minute of it.

They took us to day surgery to get her changed and they opted to not do her IV after I told them of the problems we had before. They wanted the O.R. team to do it. So we went to the O.R. and spoke to the surgeon before she went in. We're glad we did, because we had been told this should probably be a 2 hour surgery. He informed us that he had the O.R. booked for 3 1/2 hours. We would have panicked after 2. I took Ashley into the operating room and I was amazed that she wasn't scared after all she had been through. She let me put her on the table and then watched when they IV'd her. Not even a grumble. I stayed while they put her to sleep and left her in their capable hands.

Finally after 4 hours the surgeon came out. Ashley was in recovery and doing well, the surgery had gone well but the next news that he gave us stopped my heart. It was confirmed that the mass was indeed a tumor and it was active. How did he find this out so quickly? He had taken a sample to the pathology lab and they did a frozen sample as he called it. It verify's if the tissue is active or not. It won't tell you what it is, as that requires further tests, but for us it confirmed our worst nightmare. I'm really not too sure what he all said after that. I was so sure it couldn't be back, that this was a complete shock to me. Ken handled that news better than I, because he had been preparing himself. He had already had very bad days over the last two weeks. I had remained optomistic so it hit me pretty hard. Ashley was wheeled out of recovery minutes later and afterwards I realised we were probably rude to the surgeon, but we immediately went to her. They took her to the ICU where she would spend the night. After chest surgery they were required to stay in the ICU for observation. Words can't even explain the devesation that we went through for the next few hours. There was nowhere private to go and just cry our eyes out. Holding them in just wasn't possible. One of the fathers of a teenage boy we know through clinic (who just happened to be outside of ICU) saw how upset we were and came to comfort us. That helped us just by being able to share this horrible news.

We went in to see Ashley and she was fairly comfortable. They had an epidural in so she wouldn't be able to feel her upper chest. While she rested we went to call our family and friends. We bumped into one of the owners's from Ashley's dance studio coming in to bring Ashley a gift. It was so sweet of her. When she asked how she was doing of course I started to cry and by the time she left she was in tears. We called our family and friends, and many came immediately.

Ashley got through the night fairly well. She was put on oxygen as her level had dropped a bit. The physio doctor came in to get Ashley up. She didn't even complain. She sat there for over an hour. She was moved up to the pediatric surgical ward.

She was doing great other than anything to do with bandages. Changing them did not go well. They changed her hickman bandage and she almost went through the roof. I found out later they had had a difficult time putting it in so she was probably very bruised inside.

Monday the clinic doctor who was on duty came to speak to us. He was very nice, but it still didn't change the news he had to give us. We had been told before transplant, after transplant and fairly recently that if it comes back there weren't alot of options. Transplant was considered the biggest and baddest of treatments. If any cells had survived the transplant, basically they were indestructible. So we discussed what we do from here. He suggested a Phase II study chemo. They would try two cycles of that and check her. If it was working, they would continue. If not then we have to relook at the situation. We needed to know if her bone marrow was still clean so he booked her bone marrow biopsy for the next day, which is fairly uneventful. It's quite painless for her and she is sedated for the procedure.

When they removed her chest tube on Monday night that did not go very well. The last time she was sedated so this was new for her. She screamed the place down and made me promise I would never let them do that to her again. From everything that she had experienced from original diagnosis, this was the most upset I had ever seen her. After the news I had already had that day, this undid me. We laid on the bed and cried together. I was trying to apologize for everything she'd been through and everything she still had to go through.

Tuesday she had her biopsy and later that night her epidural was removed. Wednesday they released her. Our kids were at my brothers house for dinner, so we went straight there to pick them up. The kids couldn't even tell that Ashley had had surgery. She was doing great!

The rest of the week was fairly uneventful. We were to go and see the doctor again on Monday to find out the results from the bone marrow biopsy and when we should start chemo. So we tried to keep our week fairly normal. Ashley had her friend over to play on the Thursday and Saturday she went to dance class. She had so much fun. The surgeon had told us Ashley should be off school probably 3 weeks. He obviously doesn't know Ashley very well. There is no way unless absolutely bed ridden, that she would miss out on her normal daily routines. Sunday she woke up sick, and ran a temperature until about 5:00. Then she took off out to play. Unbelievable. I was pretty sure she had a bladder infection from the catheter in the hospital. I had them take a sample before we left the hospital because I was suspicious but I hadn't heard any results, so I had assumed it was O.K. I'm going to have them check her again.

Thursday, September 20 10:00PM (CST)

Ashley's respirator was removed the following morning and it wasn't long before she started to wake up. She wondered why she was in the hospital. Ken told her they had had a little accident when doing her test and she needed to stay in the hospital for a little while to make sure she was o.k. She was fairly weepy that day. I had bought her some balloons to cheer her up (when your children go through something like this you want to buy them the world). Ashley asked if it was her birthday and we told her no and she started to cry and say 'then why did you get me balloons?'. We explained that we were sad that she was in the hospital and she cried harder as she held them tight. There were times through the day that she would just look at them and the silent tears would roll. I tried to remove them so she wouldn't cry, and she said no I love them. We finally realized it was probably the pain med's she was on making her so sad. She seemed to get better the next day, but she was getting impatient to be moving around. Friday they finally told us they were going to remove her chest tube and move us upstairs. She became a new person the minute the chest tube was out. She went upstairs to the ward she hadn't been in for over 18 months. It was nice to see familiar faces. The nurse's were all quite shocked to see her there. And of course they barely recognized her she has grown so much in that 18mths. They remembered her bald, and were amazed at how beautiful her hair had come back. They released her the next day, and she strolled out of the hospital as if she had not just spent 3 days in ICU. She is amazing!!

Our waiting game began again. We had no results of her biopsy while we were there. They had told us they would call when they heard anything. We busied ourselves getting the kids ready for their first day of school. Thank goodness school has started again. We had a fabulous summer and kept the kids busy with summer camps and vacations etc. but by the end of August its TIME!

Ashley is going into JK this year and she is soooo excited. She was given a knapsack when she was three and she headed out the door immediately to go wait for the bus to take her to school. So she's been waiting a while. She met her teacher on Sept. 4th and she dazzled her with her outgoing attitude. She was shocked when I told she just come out of the hospital. She won't start school until Sept. 17th. She's on a countdown of how many sleeps!

Well it's the end of the week and we're still waiting. How frustrating. So I called. Ashley's clinic nurse called me back about 1/2hr later and what she told me made me very angry. The Friday that we were still in the hospital, our doctor had been told that the biopsy was inconclusive. So we had been waiting on pin's and needles and this doctor had forgot to tell us or any of his medical staff for that matter. We weren't very impressed. We told her we needed to come in the next day and speak to another of the clinic doctors.

We were apologized to for everything. This had really from the start not been going well. He assured us that they would stay on top of everything now. He was arranging for another biopsy for Ashley, this time in the O.R.. He needed to speak to the surgeon and get back to us. This was news we expected. We knew they needed to find out exactly what it was before they could treat it. Unfortunately that meant more surgery for Ashley.

The surgeon called and we saw him on the 14th. He explained that the mass was very difficult to get at. They would remove as much as they could but they would not be able to get it all. They also asked permission to put in a hickman incase it was a relapse. If she was fine, it is a painless temporary IV for her and easily removed. So I agreed, and surgery was booked for Friday the 21st.

Ashley had a super week before surgery. She had her first day of school on the Monday and she got on the school bus like a pro! She waved goodbye to me without a care in the world. This was a very emotional time for us. Two years ago, we weren't a 100% sure this was something she would experience, so it gave us great joy to see her enjoying normal childhood. Many joyous tears were shed that morning. All four of our children were in school! This was obviously a first, so we celebrated by golfing. She was able to go to school Tuesday and only part of Thursday. She had her pre-op for surgery. We weren't sure how she would react with having blood drawn after that CT Room incident, but she bravely put her arm out and watched them take it. Absolutely amazing. So tomorrow is surgery day. We have to be there bright and early.

Wednesday August 28th, 2001 at 10:00PM (CST)

The dreaded phone call came on August 7th a few days after we were home from holidays. We had a message on our answering machine from our doctor telling us that the CT scan had picked up an abnormal mass in her chest. This had not been seen on any of her previous scans. They were going to schedule an MRI and then a biopsy and call us. (He should never have left that msg on our answering machine. The kids all heard it and it was a very rough night).

After many tears, we realised Ashley was just too healthy for it to have come back. We convinced ourselves it had to be something else. So we went on the Monday Aug. 13th for her MRI. It went well, with the sedative making her very dopey. Ashley was enjoying walking in curved lines and wasn't particularly worried about tables and corners like I was!

We were to leave the next day for our first trip to Camp Trillium and I was worried they would postpone the biopsy because we would be away. They assured me they would call if they could get her in. So we left on the Tuesday for camp.

What an experience. Even though we had alot on our minds, we thoroughly enjoyed our 5 days at camp. The staff and volunteers were absolutely fabulous. They had endless energy. (To be that young again!). Our children's days were filled with fun things to do and were always accompanied by a 'friend'. The 'friends' spent from 8 in the morning to 12 at night with our children, except for an hour after lunch and dinner. We didn't even have to put our kids to bed!! The parents all met every night in the parents lounge to have our own fun. The whole trip was extremely restful.

While we were there we had had a call from the doctor just confirming from the MRI that there was a small mass and that he was going to recommend a needle biopsy. He would get back to us after he'd spoken to the radiologist. We waited for the call at camp and we were home a few days and still no call. So I called and was told that the file still needed to go to the radiologist and they would call us. So we waited again. A few days later I called again and was told he was on holidays and they would get back to us the next week. We are started to get slightly ticked. The following week I didn't wait for they're call. I called and finally we got some action. They were going to do the pre-op the next day Tuesday Aug. 27th and the biopsy was going to be done in the CT Room under anestetic on the Wed. the 28th.

So finally we are getting closer to some answers. We were told the needle biopsy would be quite painless and she would go home as soon as she recovered from her sedation.

Ashley's needle biopsy did not go as it should have. I should have known it was going to be a bad day when they IV'd her and she started to cry when they flushed it. She had never done that before. They capped it off while we waited to go. When we got to the CT room we met the doctor and he was extremely nice. He drew a picture of where he had to go to get to the mass and it looked very difficult. He told us there was a slight chance that something could be punctured, but they always have to tell you the bad just incase.

When they went to hook her IV up she started to scream. Our nurse who has known Ashley since original diagnosis was immediately concerned as was I, because she had never, never done this before. She was absolutely beside herself in pain. They were trying to figure out why but it seemed to be dripping fine, so at that point the anethatist just tried to inject the sedative. It wouldn't go in, which is when they realised the IV wasn't in her vein! No wonder this child was screaming in agony. I hate to wonder what would have happened if the sedation had gone in. They wiggled it around enough until they finally hit the vein and quickly sedated her. Well, our day was certainly going to pot quickly. I was a complete mess when they took me out of there. Watching your child writhing in pain and so helpless to make it better is not something I wish on any parent.

My sister in-law took me for lunch as the biopsy was supposed to be about 1 1/2 hours. (I was much calmer after that). We came back early and saw the doctor at the end of the hallway. I thought they were done and rushed to the CT room. The doctor met me there and informed that they were not done, and they had experienced problems during the biopsy. He was visably upset. He explained he must of punctured something because she had started to bleed and I was to try not to worry as they had all the top doctors in with her now. I asked how much blood she had lost and he was unsure but blood was being brought for transfusion. He told me the surgeon was in with her now trying to control the bleeding. It took me a minute for all this to sink in. My brother who had shown up during this conversation held me while I cried. Ashley's nurse took us to a quiet room to wait.

It didn't take them too long to come back and tell us everything was under control and the bleeding had stopped on its own. Unfortunately she had bled into the wall of her lung and she needed to be put on a respirator. She had also needed a chest tube put in to help drain the blood in her chest. She was on her way to ICU and we could see her in a bit. The doctor that had performed the procedure was completely devestated that this had happened. In no way could we blame him, as he had shown us how difficult the procedure would be. Ashley had unfortunately ended up in that slim chance.

Ken was home sick with a migrane and my brother suggested I wait to call until they had Ashley settled and we'd seen her. What a horrible way to wake him up when I did call. Thank goodness I had seen other children on respirators, so I wasn't completely shocked when I saw her. It was the concept of what the respirators were doing for her. Breathing for my little girl that had gone into a CT room expecting to walk out. Boy was this a really really bad day!

They kept Ashley sedated so she wouldn't pull her respirator out, but they found out soon enough what a fighter she is. The minute they touched her she immediately grabbed for her mouth to yank. They ended up loosely tying her wrists so she couldn't reach her mouth. She proved them wrong with that as well. Three times she nearly got the respirator out (which would not have been good!). So they were constantly giving her more sedation until she was at the highest dose they could give her. That's our girl!! They finally changed her
to a anestetic sedation, and they still had to give her extra. They were hoping she would be able to get her tube out in the morning. Thank goodness the children were still off school. We were able to farm the other 3 kids to family while we stayed at the hospital with Ashley. We told them things just hadn't gone as expected and she was going to have to stay a few days.

Thank goodness for family and friends at times like these. They are immediately there when you need them. Friends had come to visit with us in the night and show their support and love for Ashley. We are truly blessed!

Tuesday August 1,2001 at 08:52 AM (CST)

HISTORY BEFORE RELAPSE IN 2001:

This will be a very large journal entry as I am going to give you the history on Ashley's original diagnosis.

Ashley was a very active and bubbly little girl. There was not much that would hold her down. She was your normal 2 year old child. Her disposition was incredible. She was such a happy child.

I guess maybe I should go right back to the beginning. There was a newspaper article written about Ashley the December after her diagnosis telling this story. Alot of people thought there was a little too much detail about our personal life, but that all had to be revealed to explain our 'miracle baby'.

Ken and I already had 3 beautiful children, and the decision was made to call it quits. But that decision was taken out of our hands, as 6 mths after Ken had had his little snip, I became pregnant. We were told our chances of that happening were 1 in a 1000. So along came our beautiful baby girl Ashley. What an incredible blessing. We did not know why at the time she was given to us, but knew that God must have his reasons.

So back to Ashley at 2 years old, enjoying life as she should. She had started periodically getting low grade temps at night, but she wasn't having naps anymore and when she went to bed and slept through the night they would be gone. Her stomach was fairly large , but it just looked like the baby tummy's that children have. We used to joke that she had a "opa tummy" as Ken's dad has a large stomach.
She was prone to ear infections and about 6 weeks before our nightmare started I had taken her to the doctor with symptoms of an ear infection. She didn't have one. On a family vacation in Muskoka she again showed signs of an ear infection so we took her to a walk in clinic in Bracebridge. That's where we met a very thorough and wonderful doctor. After checking her ears, which again were clear, he noticed her stomach looked a little large. After asking us if it was always like this, he checked her and asked us to go for an x-ray. He just calmly told us her stomach was a little distended and he would just like an x-ray to rule out a few things.

So off we go to the hospital, and we waited about 2 hours and still hadn't had the x-ray done when the doctor from the clinic came in. We knew something must be up if he came in to specifically see her x-rays. Because they weren't done yet he asked if we would mind having some blood work done. We agreed and when it was done he said he would be in touch.
He called us later that night to ask us to go in to see him first thing in the morning. This was the Sunday of the July 4th weekend. He also told us to make plans to go home early and he would explain in the morning. The only thing he would tell us is that Ashley's hemoglobin was only 62, which I knew was supposed to be at 120.

Ken right away thought cancer, but it didn't even enter my mind. When we went the next day our world was changed forever. We were told she had the dreaded word 'CANCER'. He told us he thought it could be Leukemia, but we would need to go home immediately and start tests. He had already spoke to McMaster in Hamilton and they were aware we would be coming. This doctor had only been in practice for about 4 years and when he told us this news he had tears in his eyes. He told us this was the most difficult day he had experienced since being a doctor. We are forever greatful for his quick perception that all was not as it should be with Ashley.

So our lives now turned upside down, we had to go back and deliver the news to Ashley's siblings and other family members. How do you explain this to your children? There are no words to explain the complete devestation you feel until you have lived with this disease for a time, and the word 'cancer' is now not so deadly a word, but everything that goes with it is.

So we checked into McMaster on the holiday long weekend and she started a large amount of testing. She received a blood transfusion the night we got there, and of course having to hear our baby girl get her first IV. It rocks you to the floor hearing the screams and wondering why are we here? Through the first two weeks that it took for them to confirm Ashley's disease we were dazed and confused, but Ashley was handling it all like a real trooper! She just let them do what needed to be done and constantly smiled. Her biggest treat was to be dragged through all the hallways in her wagon, IV pole and all. Freedom was something she loved even if it only meant a trip to the playroom or a walk in the hallways.

They finally came to deliver the news. Ashley had had a biopsy done on her stomach and they had ruled out Leukemia. She had a childhood cancer called Neuroblastoma. She had a large mass in her abdomen attached to her kidney and liver. There was also a tumor in her chest which was a total shock to us. They didn't give us alot of information on the chest tumor as their main concern was the abdomen. There are stages in Cancer, Stage 1 being the lowest and Stage IV being the highest. Ashley's had progressed to Stage IV which I guess is pretty normal for nueroblastoma patients as there are really no visable signs of the disease. The biggest complaint usually being irritable, and tired. We were able to go back now and see the few signs we were given and in reality we were fortunate that we were given the sign of ear infections.

So I will try and make the rest of Ashley's battle a little shorter. I just wanted you all to know how she came to be diagnosed.

Ashley in the first week that we were in the hospital, became very sick. After her biopsy she developed pneumonia. We were not told how serious this could be until long after.
When she had recovered enough they immediately started her chemo treatments. She was to receive her treatments every 3 weeks. There were 8 cycles consisting of 2 chemo's. So we knew she had 16 chemo treatments in all.

Ashley was tolerating the chemo's fairly well. We actually noticed a pattern which the doctors disagreed, but on the first part of her cycle she was fine, barely sick, and when we would go back 3 weeks later for the 2nd part of the cycle, she would get much sicker. We would usually end up back in the hospital with dehydration as the anti-nausea meds were not sufficient after the 2nd chemo. They had never heard of as we called it 'her good chemo and her bad chemo'. But they did adjust her medications and she then tolerated all chemo's well.

She was rescanned after 2 cycles (4 Chemo's) and wow! our prayers are being answered. Her tumor in her chest was completely GONE! Her abdomen tumor had shrunk to almost nothing and they were unable to determine at that point if it was scar tissue or still live tumor. They decided to do another 2 cycles and then rescan. If the abdomen tumor was the same size they would know it was scar tissue.

If was confirmed after the next 2 cycles. She had responded so incredibly well to chemo that she was ready to jump to the next stage. They surgically removed what was left of the stomach tumor. She did great as usual. She was up and about in no time. The next stage was a bit scary. We had to go to Sick Kids in Toronto for a Stem Cell Transplant.

I won't go into great detail about what a stem cell transplant is other than to tell you they removed her own stem cells from her blood, painless, and then they blast her with incredibly high doses of chemo and then give her back her stem cells. She is put in isolation and not allowed to come out until her body had recovered. This treatment is very hard on a little body. Harder yet is being told as parents that you could not even give your baby a kiss to make her feel better for fear of her picking up something. If you even had a slight sniffle you weren't to go in. She was to be completely sheltered from the outside world. No visitors at all. But Ashley of course handled this like everything else. She did not seem to mind that she was stuck in this little tiny tiny room and that mommy and daddy couldn't sleep with her at night. She busied herself on our laptop computer playing blues clues and watching her favourite movie at the time 'Mighty Joe Young'. Not a movie I would have picked for my three year old but she loved it and actually would ask the nurses in the middle of the night for 'Joe'. Took them a little while to figure that one out, but got a good chuckle from it.

So everything went as it was supposed to in Toronto. She was out in approx. 3 1/2 weeks. To prepare for Ashley's homecoming after a transplant we had a bunch of wonderful girlfriends come in and scrub our house from top to bottom. The whole house had to be disinfected. Carpets were cleaned, furniture, mattresses, curtains, walls etc etc. Ashley could not be exposed to anything harmful for the first 3 months and then we could reintroduce her to the outside world. No playing at friends houses, going to McDonalds, or playing with our dog. When she did have to go out she would be masked, and keep her exposure to a minimum. Because she was done her treatment and didn't have to go to the hospital anymore this did not even phase Ashley. She carried on with life as normal.

This took us to the end of June, and we had our scans all redone, as they will do every three months for now. Again our lives are put throught a turbulant test. They have found what they call a 'hot spot' in Ashley's lower leg. They suspect her cancer could be back, but need to wait a month to rescan. So we wait, in complete devestation. We had the new scan the month later and another 'hot spot' is noticed just below her knee cap. They are now telling us they can only assume she had relapsed and we were to see a bone specialist for a bone biopsy. They also informed us that if it is a confirmed relapse that there isn't alot they can do. Not what you want to hear!! So we ignored that and carried on to see the specialist. He took one look at the x-rays and said 'those are fractures, not cancer'. Halaluya! She was fine. The fractures were hairline and were probably from her banging into something as her bones were very susceptable after transplant. We can now go back to the land of the living. We started to lead a normal life, as normal for a family with a child with cancer. You still have to go to clinic and get her blood counts done, and tests every three months and live with the fear that a fever might mean relapse, or being tired or cranky could mean relapse. For parents you have to learn to deal with the daily fears and try and put them aside and live.

Ashley decided to give me a heart attack at a young age when she pulled her cathater out, by accident of course. An explanation of a cathater is two lines coming out of her chest which they needed for hooking up her chemo in Toronto. The line goes through her chest and internally up into a vein in her neck. Well I had asked her to get on the couch so I could flush it (it needed flushing every day so the lines wouldn't stiffen up) and when she climbed up she put her hand on the end and then sat up. Well I freaked and asked my oldest to get the phone so I could call 911. I was applying pressure as it bled, and expecting her to bleed out right in front of me. It stopped bleeding when I was on the phone with the paramedics so I called them off and drove her to the hospital. The little monkey had not even said ouch through all of this and very calmly laid there as I tried to get my wits about me. When I scooped her up to take her to the hospital she fell asleep and didn't even wake up in the ER when they cleaned it up. I found out then that the primative way they used to take this out was by just yanking and applying pressure. This is now done in sterile conditions in the OR. But I guess Ashley decided the primative way would suit her just fine. When I had calmed down and knew she was fine, I realised we were finally free of daily flush's and bandage changes. She could now swim in the pool. She could go in the bath tub with no worries of getting anything wet and contaminating it. Yahoo!! Freedom is so taken for granted.

Ashley's tests and blood counts went as they should until July of 2001. She had been living a gloriously simple life as every 3 year old should. She was learning to swim. Getting ready to go to JK, making friends, fighting with her siblings. Everything was great! She was due for her routine scans (and these would be her last for quite a while as she had been clean for so long). Tests were scheduled for 2nd last week of July. We were to leave on holidays on the Friday July 27th and her tests were booked right up to and even on that day.

Everything went fine for all her tests except her MIBG scan. (This is a scan that she is injected with an isotope that search's out the Neuroblastoma cells and lights them up). She normally only needed one appt. for this scan, but they asked us to come back the next day. I was really worried as to why but was told not to worry, alot of times they need to use 2 appt's. So we went back on the Friday that we were leaving on holiday. She was rescanned and when we were leaving they asked if we could just quickly go back in the room as they just wanted to check one more thing. OK now I'm really freaking. Of course they can't tell you anything, and they were quick to try and reassure me that they just needed a different view of her bladder because it was so large. That sounded like garbage to me, but not much I can do until the doctors have the results.

So we left for holidays worried and expecting a call from the hospital on our cell. It is time's like this, for us as parents, that you take moments to look at our precious children and realise what huge blessings they are to us. Watching Ashley playing with her best friend on the beach, or riding in a tube behind the boat with her thumb up 'faster, faster' brought tears to my eyes. After already going through what she had, there couldn't possibly be anything showing in those scans!!

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