Journal History
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Tuesday, August 24, 2004
Thursday, May 27, 2004 12:12 AM CDT
Well my little man, today marks half a year since you’ve been gone from our world. Unbelievable in so many ways, but yet already it seems like an eternity since you were here. It helps so big to know that one day we’ll be together again. I for one, can’t wait! It also helps to keep you here in our hearts, as we do each day ... for there is not an hour goes by that you are not thought of or spoken of. We love you Austin and we miss you in everything we do.
We will hold you close tomorrow as we celebrate Erika’s 4th birthday! We know how very special she is to you. The two of you were quite the pair, weren’t you. I will always remember the loving, caring, tender relationship that you both shared always. I remind Erika every day how much you loved her. She doesn’t really need to be reminded though, she remembers. A couple of times now, when she has been talking about you, or remembering you ... she has grabbed her chest telling me that she’s got a tickle in her heart ... must be Austin giving me a hug! She remembers you in most everything she does and she misses you so much. The other day she threw a penny into a wishing pool and wished that you didn’t have to leave us. If only that wish could come true my little man, if only.
Monday, April 26, 2004 10:04 PM CDT
Austin,
Tomorrow will be five months since you have been gone. It might as well be five zillion months because that's how long it feels like since I've last held you.
I know that everyone would like to be told that I'm doing okay, but the truth is that each day gets harder and hurts more. I miss you more than ever and each day I feel further and further from you. I know, one day we'll be together again, I believe that, and it's what keeps me sane I think. But being on this earth so far away from you seems like an eternity all in itself.
Yes, life goes on. It has to. For the sake of your brother and sisters, life will go on. But right now, it hurts so bad. Sleeping is a chore, staying awake is a chore, some days I don't know if I'm coming or going, in fact I've caught myself just plain going around in circles wondering what the heck I am doing. Life is forever different, I don't know when or even if it will ever feel worthwhile again. My heart has been broken into a million pieces and there just doesn't feel like there's anything left anymore. I'm feeling very lost these days. Some days are worst than others.
Last week, for the first time in over seven months, I sat out on our deck. For the first time ever, I sat out on our deck without you here. There's not a single thing that I could look at without thinking about you, with all of these memories flooding my mind. At first it brought a smile to my face, but not for long, that smile turned to tears thinking about all the wonderful times we have had out in our yard. Your second birthday party, the day after we moved here. We had it out on the deck. Remember the Tonka truck that Aunt Sharon and Uncle Mark got for you? You were thrilled, you ran down the stairs in your bare feet and started pushing it all over the yard. I will always remember that! You were so happy! There's not a tree that doesn't hold some kind of memory of you either climbing and swinging off of, or collecting pine cones from. The swingset, the sandbox. I sat and stared remembering how much you loved to climb onto the deck of the sandbox. All the hammering you had done last summer up there. I still don't know what you were making. The time that you were so little and jumped right off, without a second thought. At least seven feet up in the air, and there you went. There wasn't a thing I could do but pray you landed safely. And you did, and then you wanted to do it again! Your bike, you just learned how to ride that bike. Finally, after all those years trying, you finally could ride your bike. You were so proud of yourself, and I was so proud. I was so nervous you were going to get hurt. You didn't care though, it only took a couple of days before you were showing off with the biggest of skids. There are so many memories. Birthday parties, fireworks, bon fires, swimming, fishing for frogs, peddleboating, Davis baseball, racing around the house, gardening with you, just watching you play or do nothing.
As I sat there and cried remembering all the things that I will never get to see you do again, Aaron came outside to play. I pulled myself together and watched as he got his baseball bat out and started swinging, hitting the ball like he always does. Except now, there's nobody to catch the ball for him. He hit that ball, then would go get it himself and hit it back, and so on. It broke my heart to watch him. Not only does it hurt so bad because I miss you, it hurts so bad to know that Aaron has lost his only brother. He has lost his other half, his best friend. He looks so alone. It's just not right. He misses you so much. We all do.
I will try to pick out some pictures to share soon, hopefully in the next few days. There are so many pictures to choose from, sometimes it's hard to know which ones to pick!
We're thinking of you all the time and love you more than ever.
Forever,
Love Mommy
Friday, February 27, 2004 8:46 AM CST
My dear sweet Austin:
Mommy thought I’d drop in on your webpage to say hello to all of your special friends and say thank you for the wonderful messages they have been leaving.
Remember when you were in the hospital, you started to get some happy mail? Well now Erika, Amber and Aaron have been getting some too! Erika is so excited to go to the mailbox to see if there is mail for her. She loves her “care bears!” and thinks it’s so nice of them to send her mail. We all love the pictures, notes and cards. It’s a nice way to brighten our day, so thank you to all of those special care bears!
Oh, Austin. I miss you so much. Everyone loves and misses you so much. Did you know that Marky came to visit us? He is so sad without you here. Mommy gave him a special doggy that says “Best Friend” on the tag, so that he could cuddle it when he’s sad. I think he liked that idea. He gave me a very special valentine that I will always treasure. He tried to beat your Pokemon Gold while he was here, and I got to spend some extra special time playing Nintendo with him. We both needed that I think! What a special part of your life he had become. Best friends forever. Marky knows that one day he will be with you again and I think that comforts him a bit, but like everyone else, just doesn’t understand why you had to leave when you did.
The other day I was going through my basket of “stuff” near the computer looking for something and came across a package of photos. I have no idea why they were in there, but am so glad to have found them. There are pictures of you dropping the puck at the Bulldogs game, remember what a special night that was. An awesome picture of you and Sarah’s daddy. Maybe if Sarah’s daddy still reads your webpage he can email me his address and I’ll send him a copy :-)
Then there were the pictures of you and the paper cranes. Of course you remember those! A school in Grimsby had sent a bag with 1000 paper oragame cranes that all the children had made for you. They had read the story about Sadako and the paper cranes and wanted to do that for you. You had such a wonderful time looking at all the beautiful colors and sizes. That really was an amazing thing those children did for you.
Anyway, looking at that big big smile (??) of yours, I thought what a better picture to share with all of your special friends! If anybody is wondering what is on your forehead, it is a stamp. One on the nose too! Austin, you sure did love to mark on your face or anywhere for that matter! You always did make me laugh!
Love & kisses & hugs,
Mommy
Tuesday, February 10, 2004 11:01 PM CST
My sweet sweet Austin:
Sending you lots and lots of kisses and hugs everyday. Missing you more than ever.
I found this the other day on one of my "treasure hunts". Thought it would be nice to share. I'm not sure when you made it, I sure wish I had wrote dates on these things! You sure did love valentines day and I will be thinking of you as I do every minute of every day. It's not showing up that clear, but the heart says Be My Valentine, and the flower pot says:
Thursday, January 8, 2004 9:47 AM CST
My sweet Austin:
I found the words to the song from one of your Pokemon movies. Remember the one when Ash thought it was best for Pikachu to go live with all the other Pikachu’s and he so bravely let him go, even though he knew it would break his heart? You always used to get so sad watching it. Mommy did to, not because of Pikachu, but because I knew that one day I might be saying goodbye to you. It really is a beautiful song.
Tuesday, December 30, 2003 10:38 AM CST
My dear Austin:
Christmas has come and gone as well as the busy that surrounds it. I am missing you more and more each day. It’s just now starting to feel so real, you ARE really gone. It is starting to get deeper each day. I miss you and everything about you. Your smile, your voice, the way you used to eat, the way you used to walk, run, the way you used to pull your socks right up to your knees, no matter what you were wearing. I miss the noise that came along with you together with Aaron and Amber, the teasing, the yelling, the bugging. I miss watching you and Erika snuggle. I miss our talks more than ever. I MISS your hugs and your snuggles. I want you home. I love you so so much, Austin.
Mommy thought about you alot during Christmas. It comforted me to think you were spending Christmas in heaven, laughing and singing and having the greatest celebration there ever could be. But it also left me feeling sad that you weren’t here to celebrate with us. I was missing you very much Christmas Eve. The day just wasn’t like it was supposed to be. I know that Santa was having a very hard time leaving your stocking empty and not having a present to leave you. Well, Mommy knew how much that would make Santa sad, so I hope you liked the Pokemon things we left for you on your wreath in the cemetary. I was wondering what you would have asked Santa for, and pretty much knew that you would have asked for a scooter (again!). Remember you asked for one last year, but Santa brought the wrong one? You never did stop bugging to get the “right” one, did you? Well, I know it’s not the same, but what a beautiful gift Trish had got for us. A snowbaby riding on a scooter - it was an extra special gift because it had so much meaning behind it. We put it on your cabinet for you, so everybody can see it. The Christmas Elf came too, it was really hard for him. He brought the kids their pyjamas just like he does every year. It was really hard for him not to put a present on your bed.
We missed you very much Christmas morning. Did you see all the presents under the tree? Aaron, Amber and Erika had lots of fun opening them. Aaron finally got his own Playstation 2 game, I bet he felt pretty happy about that. Finally something that he could play with that wasn’t yours! Your Nintendo game has never been so quiet. Just tonight Erika said how she wishes you were here to play Nintendo with. Did you like the Pokemon figures that Erika got? I think she really liked them, Ash, Misty and Team Rocket! She really liked her Dora Explorer movie. You would have loved seeing her open her presents Christmas morning. Mommy made sure that everybody had a special Christmas gift to remember you with. It brought some tears, but I know that everyone will cherish them forever.
Christmas Day was nice, everybody was here for dinner. I know that you would have wanted everyone together. After supper, we opened gifts. Erika was Santa Claus and she was so funny. Austin, you would have laughed at her, she was so cute! She takes after you, after all! The day was so busy, it was a good distraction, but never were you very far away - you are always right here with me, as ALWAYS!
So I guess the next hurtle is getting through New Years Eve without you. Not that it’s easy to get through any day without you, but I am guessing that particular day will be pretty extra tough. I think that New Years was one of your favorite days of the year. We have so many good memories of you celebrating each New Year. Do you remember the New Years we spent in the hospital. You were only three years old, right after we just found out you had cancer. We made sure you had lots of fun! Garry and Shiela were there, remember? Of course, Mommy & Daddy too :-) Shiela brought everything for us to have our party. You looked so cute in your hat all night. I remember how much you ate that night too!
As you got bigger, so did the parties. Aaron, Amber and you just loved getting ready for our parties. You always looked forward to skating on the pond every New Years Eve. One year we skated New Years Day - it was a beautiful day. Daddy made a fire and Mommy made hot chocolate. That's you in the bottom corner sitting in front of the fire with your helmet on. Remember the beautiful close up picture Mommy has of you with your skates and helmet on sitting in front of the fire, I can't find it. I'll keep looking though!
Of course there is the New Year’s that you fell asleep three minutes before midnight. Mommy is so happy I have that on video. You always denied it, but we knew ... it still boggles my mind how you could have ever slept through all that noise when you were awake only three minutes earlier! Well, of course, you made SURE you stayed awake last year!!
The biggest best memory I will always have of you (& Aaron & Amber) and your cousins is the pot banging. Do you know how many spatulas and wooden spoons you guys broke over the years. Even a couple of pots! You guys were always so LOUD!
We will miss you very much, but we know you will be with us all that night. We will have a pot set aside just for you. Bang on, Austin!!
We love & miss you so so much,
Mommy
Monday, December 8, 2003 7:44 PM CST
Dearest Austin,
It has been almost two weeks since you have been gone. It seems like a life time ago. Mommy and Daddy miss you so very much. Nothing seems the same. Everything is so quiet here without you. There are so many physical reminders all around, yet I still can’t believe you are gone. It just doesn’t seem real.
There are some things I need you to know. Mommy loves you so so very much, well you already knew that didn’t you. Yes, you told me that the night you went to heaven. Mommy is so happy that I had eight whole years to tell you how much I loved you each and every day. From the day you were born Austin, you always had such a special place in my heart. From the minute I saw you, I felt nothing but deep deep love for you, you were perfect, everything about you. I could tell right from that day that there was something extra special about you. You changed our world from the moment you came to us, and oh, how Mommy is blessed that He had chosen me as your mother. I thank Him for that each and every day, and always have.
I want to talk to you about the day you went to heaven. Mommy loves you so so much, remember I kept telling you that day, over and over. You were so restless that evening. I knew something was different, and I knew you needed to get somewhere. Remember, you kept telling me that? You wanted to go, but you didn’t know how and you didn’t know where. You kept pointing, and saying there? there? It was clear to me that there were so many people who loved you, trying to call you and guide you to where you needed to go. I have not for one second regretted telling you that day that it was okay to go whereever it was you needed to go. Remember Mommy kept telling you that I was right there, and I loved you so so much, and that you would always be in my heart. Not once that day did I think you needed to be anywhere else but in the arms of Jesus. He loves you just as I do, and I know that you are safe and happy with Him. If I didn’t, do you think Mommy would have let you go so soon??
I want to talk to you about that too Austin. I know that you’re right here with me, in fact, you’re a huge part of me and always will be, and I know you’re probably wondering how Mommy has been since you left. I had always thought that losing you would be the worst thing that could have ever happened in my life. But I know that the worst thing that EVER could ever have happened is you being here on this earth in pain. You being here to fight for your life, each and every day. You being here without your bright spirit that shone everywhere you went. You being here, with a body that started to fail you. There’s not a mommy in the world that could stand to see their child like that, THAT is what caused my heartache. My heartache was replaced with peace that morning you went to heaven. A sort of peace that I haven’t felt in a very long time. I know that you are so much happier where you are now, and I know that we’ll be together again, soon. A big part of you lives on in my heart and you are never far away. Oh, by the way, I LOVED the pictures of the Pokemon that you sent to me from heaven. Four perfect clouds just the way you used to draw them! We always loved doing that, didn't we!
I have been so busy since you left. Your funeral was beautiful, everything was perfect, just like you. We had the most beautiful pictures of you for everyone to see, and the flowers, oh Austin, did you see all the flowers?? The mass was really nice, Father Andy talked about the day we went to visit him, just after Ashley went to heaven. He remembered everything you talked about. I was so glad we did meet him that day, he told you everything you needed to know about heaven. The school worked really hard to make sure everything was so perfect too. Did you like the balloons that the kids from school sent you? There were over four hundred green and blue balloons, just for you! I knew you would just love that and it was beautiful to watch! Your teacher gave me some pretty pictures of them all flying up for you to see. Maybe one day, I will show everybody on your webpage.
That’s another thing, I have been thinking about whether I should keep updating your webpage or not. It was an easy choice for me, so I hope you’re okay that Mommy is going to stop my updates. Your medical fight is over and I don’t think I can put into words my feelings to so many people now that you’re gone. I do think it would be nice to keep writing about you though, so I am planning on posting a picture, maybe once a week or so, and sharing with the world what wonderful memories I have of you. I think you would like that, and I think it would be a great thing for Aaron, Amber and Erika to have when they get older.
Austin, you have touched the lives of so many people. Mommy & Daddy are so very proud of you. We are very thankful for such loving families and friends to whom we were able to share you with. I have been blessed with this webpage to share you with the world and am thankful for all the wonderful support and caring messages that we have received over the past four years. Every one person that your life has touched has had a part to play in the wonderful life you lived and we are so grateful to each and all of them!
4ever in our hearts,
Love Mommy
December 19, 2003
Dearest Austin,
It has been over a week since I wrote my first letter to you. I’m glad I had a chance to tell you how I was feeling then, maybe it will be good for me to come back once in a while to remind me that it’s not all a bad thing that you’re gone. I miss you so much. There’s not a minute in the day where I’m not thinking about you.
We put our Christmas tree up the other night, well almost, maybe we’ll finish it tonight. Do you remember last year when you wrapped up a lego toy for yourself and put it in the Christmas tree box? You wrote: To Austin, Love Austin, I am Austin, and you drew a kind of happy face on it? I laughed when I thought about it, and the kids did too. They miss you so much, they really like remembering all the silly things you used to do. I remember you wanted to have a present to open before Christmas, so you put it in the box to open when we put our tree up. I remember watching you put it in the box when I was putting the tree away, and wondering for a moment if you would be here with us next Christmas. What a special way for you to remind us all that you ARE still with us!
I found the picture that you drew for me last Christmas too. It was a big picture, full of Christmas things, do you remember? It had a tree, Santa, reindeer, a snowman, a house, and I Love You and To Mommy. You made your name out of block letters with snow coming down from the top of each one. I remember when you made that picture, you worked so hard. I am so glad that you loved to draw, we have so many beautiful pictures that are Austin masterpieces! Thank you.
We are always thinking about you Austin, and love you very much.
4 ever in our hearts,
Love Mommy
Saturday, November 29, 2003 10:45 AM CST
It is with great pain to announce that on November 27, 2003 at 3am, Austin entered into heaven. It is comforting to know he did so peacefully. In his mother's arms ... as there would have been no other way.
Funeral arrangements can be found in today's Hamilton Spectator.
We are receiving family and friends at
Merrit Funeral Home
Station St., Smithville, Ontario
Saturday, 7-9pm
Sunday, 2-4pm, 7-9pm
Mass will be celebrated on Monday, December 1st, 11am
St. Martin of Tours Catholic Church
West St., Smithville, Ontario
Love to you all,
Beth, Glen
Aaron, Amber & Erika
Wednesday, November 19, 2003 9:42 PM CST
Well, in usual Austin style, today went off without a hitch. Austin was such a brave little boy today - as if that's a surprise!
The ride up to Henderson turned into a sort of adventure for Austin. I think it felt good for him to get out of this place for a little while, even though it was a trip to another hospital for radiation. We lucked out with the weather today as it was so mild. I was worried about taking him outside without the proper clothing as it has been so cold lately. He told me he wanted to wear his shorts, the shorts that he wore when he came here. I guess he doesn't realize that two seasons have almost passed since then!
It was raining when we left, so the guy had asked if he wanted his blankets over his face so he wouldn't get wet getting to the truck. Of course he said no, and made us laugh when he stuck his tongue out to catch the raindrops. When we got to the hospital, he did it again and even asked the driver to let him stay out in the rain so he could catch some more! He's so cute :-)
They were all waiting and ready for him once we got there and the doctor worked quickly to get him all set up for the radiation, drawing marks on his face and head to line him all up. He wasn't thrilled with the attention and had a hard time getting everyone there to understand his rules - don't touch, don't talk to me and stop leaning on my bed!!! Poor guy, my heart wrenches when I see him so frustrated and even more so when people just don't get that he's not really asking for much.
The plan was to radiate his eye and the lump on his skull, but as it turned out, he also needed another spot radiated. Yesterday, Austin asked me to look in his mouth because he thought he had a blister. When I looked, I couldn't believe how nasty his gum looked at the very back bottom of his mouth. The doctor had a look and told me she thought it was a tumor growing. So I had the radiologist look at it this morning and thankfully, he decided to radiate it. It was already noticeably bigger this morning than it was yesterday. It's not causing him any pain, but we're sure that it would definitely be causing major discomfort if not looked after. So in all, he had three spots radiated today - so that meant lining him up three separate times. He was so good for all of it and for the zillionth time, I was so proud of him for doing what needed to be done without alot of fuss.
Once the hard work was done and over, he was happy to get himself back out into the rain. When we got outside we were under an overhang, so I asked the driver if he could back his truck up so we wouldn't get wet. Austin didn't waste any time to let us know that he WANTED to go out in the rain - so we did. And again, the driver waited with him until he was finished catching raindrops and was ready to get back in the truck. When we got back to McMaster, we had pulled in out of the rain, so the driver asked Austin if he wanted to go in the doors the raindrop way, or the nonraindrop way. Bet you can guess which way we went!
The rest of the afternoon was pretty uneventful - he had a great nap when we got back, woke up to watch TV a while, needed platelets so of course that meant a benedryl sleep which led him right into his bedtime. He is fast asleep and looks pretty comfortable. The radiologist will be in to see him on Monday and hopes to see a response by then. He will reassess him then and we'll go from there. As we are hopeful that these areas will respond to the radiation treatment and relieve him of any discomfort, it's not hard to forget that there are so many other areas that we are not treating.
Yesterday wasn't as uneventful. Austin gave us a bit of a scare when his breathing had all of the sudden changed. He just finished his physiotherapy, spiked a fever and started breathing rapidly. It sounded as if his nose was plugged with something, which we pretty much guessed either a blood clot or mucous. He was sleeping through this so it didn't seem to bother him too much. The nurse did his vitals and turned out his sats. were at 90%. His heartbeat had went as high as 212. They gave him a bit of oxygen and within minutes his sats. were back up to 99. The doctor was going to wait twenty minutes and then reassess to see if he needed a chest xray and/or an echo. I guess Austin decided to take care of business himself and woke up to blow a big chunk of blood and booger out of his nose. This made all the difference, and his breathing soon returned to normal.
Anyway, today was a good day with all that went on, and I'm thankful for that. Tomorrow should be a pretty quiet day - let's hope!
Good night,
Love Beth
Monday, November 17, 2003 11:09 PM CST
Well I think Austin finally caught up on his sleep! After almost three full days of sleep he caught a gust of wind last night. It surprised me last night after sleeping through his visitors that he woke up and wanted to color. Even more so, he wanted me to bring the table and chairs into his room so he could sit up and color. He started coloring at 8:30 and after finishing his picture I was sure he'd be pooped out, but he wanted to stay sitting and started another lite bright project. Finally about 11:00 he had enough and wanted back in his bed. I totally enjoyed his awake time and his conversation. He was so much more himself and we had talks like the ones I'm so used to having with him.
Today was a quiet awake day for him, he watched TV mostly. He was a little more talkative today.
The radiologist was in this morning to check on him, but we were both sleeping. I didn't get a chance to talk with him, but plans have been made for him to get radiation on Wednesday. He will have to go up to Henderson for that, so we will need to go by ambulance. He was a bit concerned that something might happen to him enroute, but I assured him that he will be well taken care of! A nurse will be coming with us since he is on pain medication. They will be radiating his eye and a lump that has come out of nowhere on his skull. It first showed up on his gallium scan a couple of weeks ago and has become obvious to look at since. He knows now that the cancer is growing in these two areas. He didn't have all that much to say other than letting out a disappointing sigh. There is much more we need to tell him, but only when the time is right.
That's about it for tonight!
Take care,
Love Beth
Saturday, November 15, 2003 10:48 PM CST
It's been a very quiet couple days for Austin and I. Austin is catching up on some sleep. He tries so hard to stay awake for Erika, who has been here everyday this week :-)
Friday morning, Austin had a CT Scan of his head. It is obvious that his eye has once again started to progress with disease. Since Halloween we have noticed a change on a daily basis. The CT Scan shows that there is progression in the sphenoid sinus as well as the area around the eye. It isn't causing him any pain, thank goodness. The radiation doctor is coming to look at the scans on Monday and hopefully we can start radiation to try to stop the growth. Their intention won't be to rid the cancer, but to provide relief from swelling and hopefully stop further progression. I will let you know what he says on Monday.
It has been 64 days since Austin's last chemo - finally his counts are starting to come up. Today his neutraphils were 1.8 - much better :-) He is still needing platelets every other day, but on a brighter note went a full week before needing a red blood transfusion today.
As I said, Austin was getting pretty tired. He really was becoming a grumpy bear - growling at everyone, me included. I understand his frustration, but still I try to remind him that he needs to lay off the poor nurses a bit - they have all been so patient with him. Thank goodness, his grumpiness was short lived and he is back to the sweet little guy I'm used to. Mind you, he still growls, but in a much nicer way :-)
Yesterday, his port needle clogged up and he needed it changed. There was no time to put Emla on to numb his skin before poking him again. I was so proud of him, he was so good at letting them do what they needed to. His bravery beads are sure piling up!
Thursday brought back alot of memories. We came to this hospital five years ago, November 13th, to learn that Austin had cancer. It is a day that will always be etched into our minds. It's not necessarily a bad day in my mind, as that was the beginning of helping us get Austin better. He had been so sick for months before they diagnosed him and I thank God everyday for the doctors who took him and cared for him enough to give us five of the most wonderful years with him. We have been truly blessed and I don't ever forget that. The last two months can't and will not ever take that away!
Love to everyone,
Beth
Wednesday, November 12, 2003 10:41 PM CST
The days are flying by so fast. It seems mornings turn into nights around here and before you know it another week has went by.
Austin is doing amazingly well considering all that he is going through and he has been put through. He still manages to have good awake times through the day and last night we even caught him in some deep down belly laughs having so much fun with his cousins.
In the past few days, he has kept busy watching movies, playing Nintendo, coloring, working on a Lite Bright picture and playing Uno. He has had alot of company to keep him busy as well.
His pain is being managed well. Still having fevers, but spaced apart enough to give him breaks between. Finally not neutrapenic, but still needing platelets and blood tranfusions on a regular basis.
There's so much to tell, yet I find myself not knowing what to write about ... so, I will say good night for now.
Lots of love,
Beth
Saturday, November 8, 2003 10:29 PM CST
Hello,
My apologies for leaving this journal entry so long. Things have changed for Austin since I last posted and I have been "staying away" from posting because of it.
Out of fairness to our children and Austin, I will not be updating you on anything medical just yet. When the time is right, I promise to let you all know what has transpired over the past week. Your prayers are needed more than ever.
Instead of putting updates off altogether, I never thought that I could be updating you on all the non-medical stuff, so for now - that's what I'll do so I don't get so far behind!
Erika came and spent Halloween day with Austin and I. She was very excited to be spending the "whole" day with Mommy & Austin. They both dressed up for the parade - last year Austin wanted to dress up like a devil, but I didn't like the thought of that - so I talked him out of it. Well, he wanted to be a devil again this year = and how could I tell him no?? Erika was the most beautiful little angel. They looked so adorable together :-) They had a good day together!
I had good intentions of a long update here, but have someone waiting on me right now. I will go, but will be back tomorrow to finish off getting you caught up on what Austin has been up to in his room.
Thank you all for checking in on us, it means more than you know!
Love to all,
Beth
Wednesday, October 29, 2003 10:41 PM CST
Hello,
The last two days have been anything but quiet. Austin has made very sure that everyone is on their toes, and then some!
I think I mentioned in my last update that Austin is becoming pretty frustrated at every little thing. Yesterday's MRI was no exception. During the end of his sedation, Austin totally woke up screaming at the nurses because they were fiddling around near his port. He was supposed to be sleeping, the little stinker! They calmed him down and got him back to sleep only for him to be upset again when they were touching him. He is so darned stubborn when it comes to those rules, that even propofol isn't going to stop him from saying HANDS OFF! A few minutes after they had stopped the sedation, he started getting very angry at everyone, me included, and went off calling everyone an idiot. I didn't know whether to feel bad, laugh or be plain embarrassed at the way he was yelling at everyone. I guess it could've been worse, "idiot" is pretty mild compared to what he could've been calling us! He went from being angry, to calling me in a very quiet sweet Austin voice to tell me that there was a ladybug in his shoe! One of many "keeper" sayings that he has blurted out over the past seven weeks. Anyway, once he was back upstairs in his bed, he was pretty stressed out with everything that had just gone on. His oxygen level was on the low side for a few minutes which was concerning, but didn't take long to bounce up on it's own. After a good nap, he woke up in the evening in a much better mood. He even managed a game of Go Fish with me and Uncle Dave!
He had a good night's sleep and was in a fairly good, but quiet mood this morning. His afternoon didn't go as smooth - he started a nose bleed around noon which got pretty nasty and lasted over two hours. He was not only bleeding from his nose, but coughing up huge blood clots that needed to be helped by suctioning out. It felt like we were helping him give birth to these clots - it was awful. I'm not really sure why he started bleeding spontaneously like that, his platelets were 24 this morning. They immediately gave him a platelet transfusion and after two long hours, the bleeding finally stopped. He was so incredibly strong and so calm through the whole ordeal ... I don't know how he does it, he totally continues to amaze all of us with his strength.
He was finally able to relax and fell into a very comfortable sleep, only to be woke up an hour later to go downstairs for his CT Scan. He was upset because he wasn't going to get his sleepy medicine for this one, but after a bit of talking, he was able to relax enough for the scan. We were in and out so fast that he was able to be back upstairs within the hour and fell back to sleep in no time. That was at 4:15, and he has been sleeping comfortably since. He has woke up for a couple of times, once to ask me if the bleeding incident was all a dream.
The reports for the MRI and CT should be done in the next couple of days, I will let you all know as soon as we do what is going on. They have stopped all of the antibiotics tonight - so the next couple of days we will be paying close attention to the fever patterns.
I should be getting back to check on our little man!
Good night,
Beth
Monday, October 27, 2003 9:44 PM CST
Hello!
Not much going on since my last update. Things have been on the quiet side all weekend.
We did enjoy having the kids here for the whole day on Friday. They had a PD day, so Glen dropped them off in the morning and picked them up that night. It was so good to see them and spend more than a quick couple of hours visiting. They have been more than incredible through all of this. Austin loved having them here and fought hard to stay awake most of the day. It was hard for him to say good night. Before they left he said he missed them already :-(
The weekend was pretty quiet and Austin slept most of the time. He had a couple of good awake times, but for the most part he seems to be very frustrated (understandably) with everything and not as comfortable as he has been the past couple of weeks. He's barely moving around in his bed and when he does it seems to be an effort. His fevers are still coming, through the night he hit 40.7, an all time high.
Tomorrow he is booked for an MRI which he will be sedated for. They will be looking at his sinuses / orbits and possibly his hips (??). We haven't done an MRI of his head since the end of July, so I'm a lot nervous as to what they might find.
Austin is looking forward to Halloween and wants nothing more than to trick or treat. He's settled with the idea that he won't be going home and is content to be a part of the Halloween Parade at the hospital.
Since I'm not getting my emails from home, and I haven't unsubscribed to the nb listserv, I'm pretty sure that my email account is overflowing and can guess that is why emails are being returned. Jan, I'm sorry I missed your email, if you don't mind maybe you can email Trish (her email addy is on Ashley's site - which is at the bottom of Austin's page) and she can get it to me, I'm sure she wouldn't mind :-) (????)
Louise: Austin smiled and nodded yes without a thought when I asked if he would like you and the boys to visit - so that's a definite please do! Austin hasn't eaten ANYTHING in seven weeks, so he'll pass on the picnic idea.
Dustin: Austin would like to have you come and visit. Thank you for your message, I'll talk to your mom about when you guys can get together.
Peter & Piera: CONGRATULATIONS!!!!! Welcome Victoria!!
Tracey: Thank you for thinking of Austin. I'm sure he would love some happy mail! I guess I should mention that Austin does have a sugar problem and can't have candy / sweets. Here's the address:
Austin Davis
Ward 3B
Hamilton Health Sciences
1200 Main St. W.
Hamilton, Ontario
L8N 3Z5
Well, I should be getting back to Austin's room to check on him. Will check in soon!
Love Beth
Thursday, October 23, 2003 8:48 PM CDT
Hello,
I feel so bad that I haven't been able to get myself to this computer for so long. It would be much easier to update you on a daily basis as it is so hard to sum up the last two weeks in one entry. Lots of stuff gets missed, but I'll do my best to get you caught up!
It has almost been six weeks since Austin started the last round of chemo. Finally, his white count has started to rise ever so slowly. Today his total white count was 0.9, and his neutraphils were 0.3. Still neutrapenic, but so close! He is still needing platelet transfusions every second or third day, but his hemoglobin has been hanging in there alot better, only needing transfusing every six days. In total, he has had over thirty blood transfusions since we have been here. (OH, by the way, yes, we are still here in the hospital - going on seven weeks now).
The fevers are still happening. For the last couple of weeks they have been letting up a bit. Six hours between Tylenol, much better. One night I think he even went ten hours! Last night though, he spiked early in the night and didn't break. He woke up this morning at 40.6, the highest it's been yet. It did break earlier this evening, so we'll have to see what the next couple of days holds as far as that.
Pain wise, he had a couple of good weeks! He was in such good spirits and each day had good sitting up times and playing times. Last Friday, the physiotherapist started working with him. He started with four different leg excercises and she had him bear weight on his legs for ten seconds. He tried the day earlier using a walker but it didn't go so well, so he suggested using Mommy as his holding post and that worked much better. He wrapped his arms around my neck and put weight on his legs until he started wobbling enough to stop. It was encouraging to see him work so hard and do so well, but that was short lived. He woke up in the middle of the night in so much pain. His hip really hurt and he didn't know what was happening. He settled after about ten minutes and went back to sleep. He slept until six o'clock the next night! I think he must have had a cramp or spasm from the exercises that day. He used those little muscles for the first time in over six weeks. Saturday evening and most of Sunday he wasn't the same as he had been over the past couple of weeks, so I wondered if it couldn't have been the strain of exercising. He wasn't much better and started to complain that he couldn't roll on his right side. He hasn't rolled on his left side for quite a long time. This left him lying on his back not willing to even move for fear it would hurt. He stayed like this for almost two days. So I had thought it might have been the bed. He was on a gel bed and he kept complaining that he couldn't move because he was stuck in a crator like hole. It made sense, so I had them order an air bed. After a couple of hours on the air bed, I realized that it wasn't the bed, it was Austin. Something has changed and he just isn't comfortable again. Yesterday we addressed the pain issue and started boluses every four hours to see if it helped. It seemed to, so today they've increased his drip. He slept most of the day, and is still complaining that his hand and his hip hurt. He is sleeping comfortable right now, so I'll have to watch tomorrow to see if it is better or worse.
He has continued to exercise since Monday and is doing such an awesome job!
Alot of people are asking what are they planning on doing. Well, for now we have to take each day as it comes. In order to do another chemo, we need: his white count to come up a bit more and stay that way for a few days, we need to rule out infection for sure - they will be doing a CT Scan of the lungs and hips as soon as he isn't neutrapenic to rule out fungal infection - if so, they will discontinue the amphotericin. They have to stop the other antibiotics and wait at least 72 hours to make sure there is no sign of infection. The doctor doesn't think we will be able to do another chemo for at least a couple of more weeks. I would really like to see it sooner than later ...
I'm hoping to get to the computer in the next couple of days to update you all on all of the non-medical stuff!
Good night,
Love Beth
Tuesday, October 14, 2003 10:20 PM CDT
Austin had an okay day today. He woke up in good spirits and couldn't wait to watch Daddy Day Care for the umpteenth time (thanks Dave!). After his movie, he fell back asleep for the afternoon.
He woke up to my telephone conversation with Erika, and was happy to talk with her for a while. They were both pretty talkative and always so cute together. Erika was so funny, when I was talking to her she asked if I wanted to play Hide and Seek. I told her sure, so she dropped the phone and went to hide! Funny enough, I found her, she was hiding behind the couch. When she got back to the phone, I told her no more hide and seek, so she asked if I wanted to play I Spy? So we did. I went first, and I Spied something green (Austin's pajamas). Right away she looked around the room at home and guessed the plant in the fishtank. It was too funny. When she spied green, I guessed the tree outside, and she said, nope, the tree"s not green anymore Mommy, it's red! Then she said "Mommy, you're missing all the pretty colours!" How did she get so smart? So Austin and I decided that Daddy should videotape our yard so that we can see all the fall colours that we're missing. Our game went on quite a while, whenever I guessed right, she would say "Good job, Mommy!" I miss her so much!
Anyway, the rest of Austin's day went well. After watching Daddy Day Care yet again, Austin and I sat on the edge of his bed and colored for awhile. He's doing so well sitting up. The doctor's to do list for the week is to have him bear weight on his legs by the end of the week. If that goes well, we will talk about decreasing the pain medicine slowly to see how it goes. Of course the other to do on the list is to get that white count up!
Think WHITE COUNT!
Love Beth
Monday, October 13, 2003 8:06 PM CDT
Five weeks and here we still are ...
Things are still pretty unchanged. It just feels like same thing, different day. Still here, still having fevers, still no white count, still needing blood transfusions every other day. Still on antibiotics, still on morphine, still, still, still. His doctor said it best yesterday, basically, he's stuck. No worse, no better, just stuck.
Five weeks ... and he's still here ... still smiling, still laughing, still so sweet, and still fighting. What a better day than today to be so thankful for that!
This morning I asked Austin what he wanted to eat for Thanksgiving (he hasn't eaten in five weeks). I asked the obvious, turkey?? No response, so I asked if maybe Daddy could bring some chinese food? pizza? KFC? Nope. All he said was "Like, as if we're going to be here for Thanksgiving anyway". Oh my ... I forgot to tell him it was Thanksgiving today ... I guess I'll have to be sure to remember to give him head's up on Hallowe'en! Although he didn't give in to turkey, he did have a bite of pumpkin pie ... well it's a start anyway!
Just checking in quick, I should get back to Austin.
Good night,
Love Beth
Thursday, October 9, 2003 9:07 PM CDT
Another good day in the right direction ...
Austin totally enjoyed his visit from Erika this afternoon. Instead of waiting for the physiotherapist, Austin decided he would do his "exercising" before she got there. While Erika was here, Austin managed to get himself into a sitting position on his bed to pose for a picture. It took a few tries as he kept getting up and falling backwards, but with a little help from Erika holding his hands to keep him up long enough for me to take a picture, they managed pretty good!
He did fantastic at sitting at the edge of his bed with Erika to play a game of magnetic darts. We put the dart board on the couch and the two of them sat on the bed. In total, Austin sat unsupported for forty-five minutes!! He was having a great time with his little sister! After darts, they had a game of Don't Break the Ice. His neck was the first to get sore, and he had enough. What a great accomplishment = I think the physiotherapist would have been happy with fifteen minutes.
All of this through a benedryl :-)
He needed red blood today, other than that it was medically uneventful day.
Tonight, he has been enjoying a visit from his cousins, Darryl, Devon & Aleah. They have been playing Nintendo steady for the past couple of hours. He is full of smiles and having a good time!
It is great to see him so comfortable and a part of me is so happy for him to be playing like he is. But still, I realize that he is able to do this because he is being heavily treated with narcotics. A day at a time, I know ...
Thanks Trish for updating Austin's pictures! Don't forget to check out the photo page, there are some new pictures there as well!
Good night,
Love Beth
Wednesday, October 8, 2003 9:41 PM CDT
WOW, what a surprise to see all of the wonderful guestbook entries that have been left since last I checked. It is an incredible feeling to know that Austin has touched the lives of so many people. He is truly so special and I am happy that I have been able to share his story with so many people. Thank you all so much!
Austin has had a few okay days. Switching the morphine seems to have made a big difference. I would say that since the switch he has little to no pain. They did increase the dose a smidge and since then, he has been way more comfortable. I was a little nervous that he would sleep for days like last time they upped his morphine and asked them if it looked at all to be the case that they put it back down. Yesterday he woke up at 11:00 and comfortably watched a movie before going back to sleep around noon for the rest of the afternoon. He slept right through a visit from Daddy, Nana & Helen and Donna and woke up around 6pm.
When he woke up, I was so happy (and surprised) to hear his voice so clearly saying "Hey mom, I finally figured out Erika's painting" (the one she painted for him the other day). He told me what all of her little scribbles meant to him, and then he invited me onto his bed!! I told him I WOULD LOVE to come sit with him on his bed!!! I couldn't believe that in a matter of minutes we ended up in a pretty good snuggle having one of our famous conversations about "nothing" for quite a good while! I don't really know how we ended up so tangled up, but somehow I was lying on his bed, with his legs over my back and my arms wrapped around him, rubbing his belly and his arms. It was an incredible feeling to finally be able to be like that with him!! After we untangled ourselves, I put the head of his bed up and he sat like that for quite a while. He was talking so great!! and he was actually smiling!! I was able to snap some great pictures of him in his incredible mood, and hope to get them on the web page soon! Trish & Brenda came by shortly after and we all played a game of Pokemon Yahtzee. He was still in such a smiley mood, and I think I even saw him laugh a few times!! Brenda read him three stories before bed and enjoyed having a bit more conversation with him! WHAT A GREAT NIGHT it was!!
This morning he woke up in a fairly good mood as well. He seems so much more comfortable. He had a better visit with Daddy this morning and had a few awake times through the day. He had an afternoon nap so he would be ready for the physiotherapist to come by for their 4 oclock appt. Their goal for today was for him to sit up at the edge of the bed and play a game for five minutes. They ended up playing "Don't break the ice" for about ten minutes before he said his neck was starting to hurt. Tomorrow they are going to try a bit more.
The day was going fairly smooth until this evening when Austin said he tasted something funny and needed to spit. He started spitting out blood, quite concerning since his platelets were only 11 this morning. At first we weren't sure where the blood was coming from, but now know that the inside of his cheek was bleeding. It was hard to tell, but we're guessing he might have a mouth sore that could have broken open. We'll check tomorrow. They ordered platelets which took two hours to come up, (thank goodness there were single donor platelets in the hospital), so he sat with a face cloth stuffed in his mouth to stop the bleeding most of the evening. Once his platelets came, he was able to take the face cloth out and he is now sleeping quite peacefully! Donna had the honours of reading him a bedtime story tonight.
The fevers are coming and going now. He is bouncing back and forth with normal temps and spikes. The tylenol seems to be giving relief, which wasn't the case for four weeks.
His white count is still 0.2 and neutraphils 0.1 Three weeks and counting. He is needing platelets every three days, red blood every three / four days. Tonight's platelet transfusion marks twenty six transfusions since his admission one month ago.
I am hoping so bad that tomorrow is just as good of a day and they only get better!
Good night,
Love Beth
Sunday, October 5, 2003 10:17 PM CDT
I feel so bad that it has been so long since my last update. For whatever reason, each night just hasn't been a good time to sit at the computer - I am blessed with such good friends that I have had quite a few late night visitors to keep me company :-)
Since my last update there has been a few ups and too many downs that I'm not even sure I can remember all that has taken place. I have most of it written down in Austin's book, but I'm feeling too lazy to go get it right this minute, so I'll wing it for now!
Monday night was bath night which didn't go quite as well as last week did, in fact it didn't go well at all. We had to wake him from a benedryl sleep to take his tubes out and get him to the tub for the hour in between needle changes. His temperature was 40, so he was already shivering - and being in the tub just made it worse. The water was as warm as I could make it, but he just kept saying how freezing the water was. To add to his discomfort, he could barely move because he was in so much pain. I couldn't help look at him in the bath thinking how terribly sick he looked and it just broke my heart to pieces. I couldn't get him out of the tub fast enough. Once we were back to the room, he still wanted to get cuddled up and go for a wheelchair ride around the hospital. We took Nanny and Art for a walk to show them some of our stomping grounds throughout the hospital. He lasted about 20 minutes and had enough sitting. He slept the rest of the night.
I can't remember what we did Tuesday, but Wednesday was a bit of an up day. His white count came back as a whopping 0.5, and his grans. were 0.3! I really thought he might have been on an upswing and was terribly relieved throughout the day. He had bouts of good awake times which made for more encouraging thoughts that we might be heading in the right direction. He even had a normal temperature for a whole hour - six hours after a tylenol!! First time in almost four weeks!
That didn't last long enough though, Thursday was an absolutely horrible day. From the time he woke up, he had a real bad time of everything. His white count came back down, 0.2, and grans 0.1. He was nausious pretty much the entire day, he was spiking fevers with no relief (still), he was twitching and jolting so much that each time he cried in pain. There wasn't a moment in the day that he looked even somewhat comfortable - even in his sleep, he looked like he was in some sort of distress. He moaned and kept saying "ow" even in his sleeps, which was another issue, he just couldn't have any sort of an awake time. His breathing started to be concerning in around that day as well. He was breathing funny through his nose and nobody really knows why. His blood pressure and oxygen levels were all normal, and his chest sounded clear. The doctor began to wonder if the tumors in his sinuses were maybe getting larger and it was making it difficult to breath. I can't remember what else went on, but it was just a hard hard day to watch him so uncomfortable. That night they gave him Ativan to try to help with the twitching and jolts. The first dose didn't seem to help, but through the night he seemed a bit more relaxed. I even got to hold his hand for almost an hour :-) before he noticed!!
I guess Austin was the major subject of conversation during rounds and everyone got together to figure out what more they could be doing for him. They started by contacting the pain management team to find out if there was something else they could be doing to get his pain under some sort of control. The other suggestion the doctor made was regarding his fevers. In a normal (???) situation where you have a immunocompromised patient experiencing persistant fevers with negative cultures, the next step would be to suspect fungal infection. The only treatment for fungal infection is a wicked antibiotic called amphotericin, (nicknamed amphoterrible) which has some pretty nasty side effects. The two most common being high fevers and the shakes. Less common, but very scary and very real would be going into shock. We were left to think about it for the night.
Friday, I met with the pain management doctors and spoke to them for quite some time about what has been happening over the past few weeks. After our meeting, they had made the suggestion to take Austin off the morphine and switch to something similiar without some of the side effects associated with morphine. It is still in the same family of narcotics, called Hydromorphone. Within a few hours, I saw a big difference in Austin's comfort level. He seemed much more relaxed, and the twitching and jolting stopped soon after making the switch. He seems alot less agitated and now has been staying awake much longer and talking much clearer. His breathing seems much better too, so hopefully this was a side effect of the morphine and not disease related.
We also started the amphotericin Friday night. After speaking with some nurses the night before and talking with the doctor Friday morning, we decided it would be negligent not to begin this course of treatment. What if???? he had a fungal infection and we fluffed the symptoms off as being from disease?? After a few questions from the doctor and the nurse, a decision had to be made whether or not we wanted to proceed to treat Austin aggressively in all aspects of his care. I wasn't sure what they really wanted to hear from me other than I still have hopes that Austin can pull through all of this and that we weren't ready to give up just yet. That's all they needed to hear.
He has had three courses of amphotericin, and (knock on wood) hasn't had ANY reactions!! It has been a huge relief and from what I understand, the more you get, the greater resistant to the side effects. I probably jinxed him now - I hope not!
Saturday he seemed far more comfortable than he did on Thursday. The problem for the day yesterday ... diarrhea. Poor little guy must have been to the bathroom fifteen times. Not an easy chore for someone who can barely move. It was so bad for a while that he wasn't making it to the bathroom, I felt so bad for him. He is now sporting the famous green and white striped hospital jammies which are so much easier pulling up and down than the shorts he has had on for weeks!
So for some good news! His fever has been breaking! Yesterday, I think, he only spiked twice, all of the other temps through the day were normal! He had some pretty normal temperatures today, although tonight he was in around 38 / 39 for a couple of hours during his ampho infusion. Hopefully, it just keeps getting better - ok, probably jinxed him twice now! I had asked the doctor today how they would know whether or not the temps were heading toward normal on their own, or whether it was from the antibiotics? His answer was they wouldn't, so I understand they would probably discontinue the antibiotics after a couple days of NO temps and see what happens. If he spiked again, they would conclude he had infection and start the antibiotics again. Probably best to take this one day at a time :-)
So, that leaves us to pretty much the same state we were in last time I updated - just using different meds. It is still taking some effort to move back and forth from side to side and he is still not sitting up. It has been over four weeks since he has put any weight on his legs. The physiotherapist is coming by tomorrow to meet Austin and suggest a couple of exercises we can start if he is up to it. I'm not sure he will be receptive to anybody touching his legs quite yet. He is finally starting to let up on the nurses taking his blood pressure. They have all clued into his routines, so it makes it much easier for him. It's kind of cute how each nurse will forewarn the next one about all Austin's "rules". Their speech goes something like this: Wake him up and ask for his arm. Let him pull the blanket down himself. Wait for him to give you his arm. Don't touch his arm, other than to put the cuff on. Let him take his own temperature. He will pop the plastic thingy off the thermometer and give it to his mom to put in the drawer - he is saving them. Don't touch his bed. If he needs Tylenol, have it ready and put the head of the bed up until he says "that's good". Hand him the medicine cup with the tylenol and his water, use the plastic cup, not the styrofoam, no straw and no ice. He will give his mom the medicine cup, he is saving them too! Poor nurses, they probably cringe at coming into his room fearing they just won't "get it right!" I have to say though, these aren't high demands, and if they're not carried out just right, the most they'll get is a little whine. I would imagine it could be alot worse!
I guess the other thing worth mentioning is that Austin began losing his hair the other day. I managed to save a couple of little curls :-). He is almost all bald now except for a little spot on the top of his head and a few whispies on the sides. Daddy tried to shave it clean today, but it was hurting so he had to stop. He's going to try again tomorrow! The kids were up yesterday and today for a visit. I miss them so so much :-(
Anyway, I will try not to leave it so long before I update again.
Good night,
Love Beth
P.S. Yes, Kristen - thank you, we got your "package". Very cute! Sorry we missed you the other day, we hope next time you can pop in for a minute!
Sunday, September 28, 2003 10:36 PM CDT
I haven't posted an update for the past few days because they would have went something like this:
Thursday - slept all day
Friday - slept all day
Saturday - slept all day
Really, not much to tell. Throughout the three days, he probably was awake a total of ten minutes. On the flip side, he has been having very light sleeps, enough that he hears mostly everything going on and has tiny conversations with his eyes closed. Enough that you better make sure you watch what you say in his room :-)
The doctor seems pretty satisfied with his comfort level, given that he is comfortable enough to sleep his days away. I on the other hand am so missing my time to "play" or simply have an awake conversation with my little man. It has been too long since I have been able to touch him without hurting him, and way way too long since we've had a real hug. This morning he told me I have to wait until he gets his tubes out. This is another one of those "rules" - no hugs when he has tubes. I might just tell the nurse to get rid of those darn tubes for a while just so I can give my little guy a real hug!
The fevers are still going strong - for the past few days he is spiking to 40.5, with little relief from Tylenol. Nothing has been growing from the cultures and they haven't said anything about the chest xray he had done the other day - I guess that would mean they didn't see anything.
This afternoon Austin had visitors, and we were more than happy to see that he eventually woke up enough to watch a game of Nintendo, which escalated into giving pointers on how it should be played, to actually playing himself for a while!! Towards the end of that visit, Uncle Dave and Aaron surprised us with a visit, so Austin continued to play Nintendo with Aaron and was awake enough for their company. In all, I think he was awake for almost six hours. Just maybe, he'll fall into a deeper sleep tonight so that he can be awake a bit more tomorrow. His days are running into each other so much, I think in his mind the last four days have been one big day to him. He talks about something that happened Wednesday as if it were yesterday. He thinks night is day and day is night, and he thinks the nurses are taking his temperature every two minutes. This morning (7:30am) the nurse was doing his bloodwork and he told her that someone already did his bloodwork three times today. They only do it once each morning :-)
So, if Austin is sleeping ALL day long, you ask what is Mom doing with all of her time?? Well, I have watched more TV in the past three days than I have watched in the past ten years! Oh - and I almost have Pokemon Pinball beat (gameboy) - Austin's going to love that - poor guy hasn't even played it yet. Once you've caught all the Pokemon, you can't erase it and start over. He told me that the first thing we have to do on the way home is to stop at Toys R Us and buy a NEW game for him!
That's about it for tonight. I will update if there is anything new going on, or if it's just been too long between nothing going on!
Good night,
Beth
Thursday, September 25, 2003 9:42 PM CDT
Still pretty quiet here which I'm guessing isn't a bad thing.
Austin slept in yesterday until early afternoon. He woke up in good spirits and we spent the entire afternoon doing crafts. He put the finishing touches on his piggy bank, and then we had fun making a plaster handprint - a craft kit that I had got from downstairs quite a few days ago. He had fun decorating the box that surrounds the handprint and it turned out awesome. Glen and Austin spent some time together making a fire truck out of a Home Depot kit, which Austin is making for his little friend Mitchell - who loves fire trucks! They also made a little wooden game thing that you throw rings on pegs. The afternoon pooped him out though and he fell asleep for the night pretty early.
He did need platelets yesterday morning. They are still waiting for HLA matched platelets, so instead they gave him a couple of extra units of single donor. His platelets this morning were 36. Not a great response, but at least he didn't need transfusing. He did need red blood though, his hemoglobin dropped to 77.
I was hoping that gave him enough of a boost to have a bit of an awake time tonight, but he has been sleeping all day and is now tucked in for the night. He has been awake all of ten minutes the entire day. Although, sometimes it seems he is soundly asleep and he surprises us once in a while by getting into the conversation with his eyes still closed.
This afternoon, he commented on this little kid who had been crying for quite some time. With his eyes still closed, he said "Mom, it's sure taking the nurses a long time to access that kid's port, I don't think I could cry that long". Austin figures that if there is any crying going on it must be a kid getting his tubes put in. It's the one thing Austin just doesn't like, although he hasn't cried about it in forever, if ever. (Well, maybe a couple of times). Tonight the same kid was crying (freaking out) and I found out that he had just had a fingerpoke to monitor his sugar. I'll have to be sure to tell Austin tomorrow!
His fevers have started to get worse. He is now spiking at 40.5, with little relief from Tylenol. Infectious Disease was up this afternoon to talk about what they are doing to rule out any infections. Later in the afternoon, Austin had another xray of his chest this time, to rule out anything going on in his lungs. Hopefully, I'll find out what they come up with tomorrow. They have cultured him again and have decided to keep him on the antibiotics he has been on this past week.
The doctor is comfortable with the morphine drip even though it seems to be making him quite sleepy. He would rather him sleep than be awake in discomfort. I'm not sure which I'd rather see, him sleep ALL day, or have little awake times with a little discomfort. That sounded horrible, of course I don't want him to be in pain, but I really miss my little guy when he's sleeping - hopefully today was a catch up day and he'll be more alert tomorrow!
That's about it for now - oh, there's probably a whole whack of stuff I have been leaving out - the days just seem to be running into each other.
Thank you once again for all of the great guestbook entries, I love to come peek at them through the day!
Good night,
Love Beth
Tuesday, September 23, 2003 9:30 PM CDT
Not much happening today. Very quiet - Austin slept most of the day away. I'm not sure if it's because they upped the morphine or if it's because he hardly slept last night. He got a blood transfusion through the night and they woke him up, he says, every two minutes to take his blood pressure and take his temperature.
He had an awake time early in the afternoon and seemed to be pretty comfortable. We sat his bed up and he painted a piggy bank that I got for him the other day. He did a great job, it's so cute :-) He had a good visit with Glen, and that's about it. He's been sleeping since and by the looks of it, is sleeping for the night.
For the first time in nine days, he didn't need a platelet transfusion. His platelets were 18, so I'm sure he will be getting them tomorrow morning. The nurse told me that they don't do HLA matched platelets here, so our doctor has contacted Toronto Sick Kids, and they have began processing what is necessary to find a match. Until then, they have suggested giving two extra units of single donor. We'll see if that helps.
So, all in all, a pretty quiet day :-)
Take care,
Love Beth
Monday, September 22, 2003 9:43 PM CDT
Well, here we are, two weeks later and it seems like yesterday that all of this began.
Things haven't changed much over the past two days. Austin needed platelets again, making it eight days straight. He has been getting single donor and still not getting the response that would be expected. This morning his platelets were only 4.
He is still experiencing high fevers - with tylenol.
His morphine drip was bumped up to 8 yesterday and seemed to help. His leg stopped hurting "very very bad" and he started to extend it again.
The doctor talk today went something like this:
They are obviously concerned about the platelet issue. Because he is not responding to platelets they are rethinking the way they will transfuse. The reason we transfuse is to prevent potential bleeds. By transfusing so often, we expect that his body is producing antibodies against the platelets and eating them up as fast as we are giving them. They have consulted with blood bank and have started the process of finding HLA matched platelets. This would be the same as finding a donor for a transplant - they want to find someone who matches Austin's needs exactly. This could take going through thousands of donor's before finding the "right" match. The doctor said sometimes they get lucky and find a few, sometimes they come up with none. We will likely find out in the next few days if they can come up with someone. I'm not really sure how it all works, but know that we are entering into serious territory here. A few days ago, the same doctor mentioned they only seek HLA matched platelets under extreme conditions. I guess Austin fits that bill now. If this is the case and we transfuse HLA matched platelets, it's possible, I guess either way, that we might have to leave him with "low" platelets for a couple of days which can come with serious risks.
The fevers are concerning them, but there isn't much they can do other than continuing to give Tylenol. He is assuming it is disease, but doesn't want to rule out the fact that he is neutrapenic (low immune system). So for now, he is treating the fevers the same as they usually would and have cultured him again today for any infections growing. So far, his cultures have all come back negative for any bacteria / infection.
We also discussed his pain control. He had asked if I felt he was comfortable enough. I told him I wasn't quite sure what comfortable meant - he is still guarding himself, still hurts getting his blood pressure done, still ow's when someone bumps his bed - but doesn't complain, is in good spirits when he's awake and seems to be moving around in his bed - but he's still not using his arms like he should and isn't sitting up by any means. He decided to up the morphine to 9 to see if this would take the left over edge off his pain. I told him that was fine, but was worried about him being "dopey" on morphine, and did NOT want his "wiggly" dreams to come back. He agreed that if bumping it up at all caused him to be "dopey" we would knock it back again and conclude that "8" is the happy medium. We'll try "9" for a day to see if that is the number we are looking for.
Tonight we had to change his port needle again, so we were able to get him in the bathtub again. The nurse gave a bolus of morphine before unhooking him - and he had a GREAT bath!! To look at him in the bathtub (other than how incredibly skinny he has got) he looked like there was nothing wrong with him. He was moving around like there was nothing wrong. He washed himself, and did a great job at washing his own hair. Arms way up with no effort at all. It was so good to see him like that - I wish we could keep him in the tub all day long! After his bath, he spent some time sitting up in his bed and after getting dressed, I put him in a wheelchair and took him downstairs to get a change of scenery. We went down on the hunt for something to eat, but came up empty handed. Well not completely empty, he picked out a "Patrick" balloon (Sponge Bob) and a bag of sunflower seeds (that he decided he didn't want). After his bath, Aunt Sharon came and they played a couple of games. It was so good to see him feeling good, but that was short-lived because his needle insertion didn't go so well. He had some bleeding from his port-site and the nurse had to put some gauze under his butterfly needle, which he absolutely hates. Now tomorrow, they will have to change his dressing to remove the gauze. It is one of the hardest things for Austin - having the tegaderm removed and anyone being remotely close to his port.
When they changed his needle, they drew another CBC. Tonight's counts were platelets 26, hemoglobin 74 (down from 88 yesterday). So tonight, he will be getting a red blood transfusion.
The kids were in last night with Nana and Glen. The visit went a little better than Sat. night. I wasn't able to get out to the store to get Aaron his stuff for hockey, so we will have to do that one night this week. I did take Aaron and Amber across the street to grab some supper, and instead of a room full of people, last night, I tried to keep it split up a bit. Nana, Amber, Erika and I hung out in the parent's lounge, and we left the boys to hang out for a while. It was a lot less overwhelming for Austin and turned out to be a better visit for both of us. Erika was a bit more gentle with him last night and stayed off his bed for the most part. They did manage to sneak in a few snuggles though :-)
I'm sure this all seems rather jumbled, but then again, so is my brain :-) The doctor did mention that we will be here for quite some time - so be prepared for some late night "brain dead" journal entries!
The doctor's most important question to me today was whether or not I felt Austin was improving or not. It was a hard question to answer, so I told him that had he asked me Thursday when we bumped his morphine down because we thought he was feeling better I would have told him absolutely "yes". But after this weekend, I told him "I don't know", but I think "a bit". I told him what I DO KNOW is that it has been two weeks since he came here in such bad shape and I know for certain, that he is not any worse. I think somewhere in there is cause for hope, which we are all holding on to most definitely!
Good night,
Love Beth
Saturday, September 20, 2003 9:12 PM CDT
We were pretty disappointed to see that Austin couldn't tolerate the morphine being lowered, so this morning they put it back up to 8. Through the night, he started to guard himself again and I noticed he was using the bottom of his shorts to pull his legs up. This morning he woke up and said his right leg hurt very very bad and he couldn't move it. After they increased the morphine, he seemed to be more comfortable. He is still having fevers.
For the sixth day in a row, he needed platelets - again. He needed red blood too as his hemoglobin went down to 75. Hopefully he'll feel a bit perkier tomorrow. Today he spent most of the day napping and watching movies. Glen and the kids came up for the night. Erika was a bit too bouncy tonight and upset Austin, which upset Erika, and it just was not as nice of a visit for the two of them. Aaron and Amber seemed okay. Tomorrow Glen is bringing them for a visit with Nana (yaaah!!), so I will be leaving Austin with the two of them so I can take Aaron out to get him ready for hockey. He has grown out of everything this year, so he is pretty anxious to get all of his equipment. His first practice is on Friday. I can't wait to get back to my "escape" at the arena!
I'm off to bed, a little earlier tonight :-) I'm looking forward to spending some time with the kids tomorrow AWAY from the hospital!
Good night,
Beth
Friday, September 19, 2003 11:40 PM CDT
Thought I'd pop in quick and give a quick (??)update.
The past two days have went by quickly. Austin has slept through both days for the most part, but waking in the late afternoon in good spirits and feeling much better than he has been. They have started to decrease the morphine in small spurts to see if Austin can manage with less. His drip had been set at 8 for the last five days, so today they lowered it to 7. The doctor said he will lower it slowly and hopes to get him down to a two so that we can possibly go home on oral morphine. Of course, we still have to wait for the fevers to come down, which he is still having problems with (but better), and his counts to come up a bit. His neutraphils hit 0.00 today, so until we see some numbers, we won't be going anywhere.
Even with the pain under some sort of control, he still hasn't moved around in his bed too much. He is able to stretch his legs out straight, which he couldn't do last week and his arms seem to be moving a bit more. The nurses are still having a hard time doing blood pressures. He is still in enough pain that sometimes the slightest movement hurts (depending on who is causing the movement).
The doctor consulted with an orthopedic surgeon yesterday to find out whether or not we should be encouraging Austin to be moving around more, or to start bearing weight on his legs. He said it's possible that bearing weight too early could cause bones to break or shatter. The ortho doc wanted xrays before he could make any suggestions, so they ordered them to be done up in Austin's room. The nurse and I were pretty nervous about them coming up and moving our little guy around, so we made sure they would be told that they needed to be extra careful and let Austin do the moving himself and basically not to touch him or hurt him, or else!! The nurse had planned on giving him a morphine bolus to make sure he was as comfortable as he could be. We waited all afternoon, but didn't hear from them.
We were so happy to see the kids last night. Austin was so excited to have Erika hopping up on his bed the minute she walked in the door. Amber looked so happy to see Austin and you could see how much she misses him. It was a sure sign Austin is feeling much better as Amber approached his bed, and he swung out at her to get lost. Brotherly love I guess you'd call it, but it was sure nice to see he hasn't lost his passion to drive his sister crazy! They spent the evening watching Finding Nemo (thanks Dave!) and just being silly together. Erika was all over his bed, practically bouncing all over him, and he didn't give it a second thought. At one point she was knocking on his knees, where I thought he would absolutely be screaming in pain. Instead I hear this little voice from under the covers saying "who's there???" (Like, knock knock, who's there?).
A few times today, someone would barely touch his bed and he'd be so sad and say "Ow" and have tears. I asked him how in the world Erika could have been all over him without hurting him, yet someone can just brush up against him and it hurt so much. He told me he didn't want to "ow" Erika. I imagine he knows that if I knew Erika was hurting him, I'd ask her to get off the bed, and he didn't want her going anywhere.
When the kids were leaving, he had to have his kiss and hug from Erika. Amber said goodbye and blew him kisses, and Austin threw her a raspberry. It was cute when Amber said "Well, I guess we know he's feeling better!"
While the kids were here, the nurse got a call that the xray guy was coming up in the next half hour, so she went in to give Austin a bolus. Sharon and I went for a quick walk, thinking we had enough time before they came up to see Austin. When we came back (10 minutes later), I was surprised to see the xray guy leaving the ward. When we got to Austin's room, he told us that his xrays were all done. I guess he came up, kicked the other kids out of the room and did what he had to do. The nurse came in after he had already finished, and the guy told her that Austin was his best patient of the day. He was fantastic! She (and I) were totally amazed that he let the guy do it, and above that, did it without being hurt or upset. I don't really think he even needed the bolus. Have I ever mentioned how incredibly brave Austin is??
The doctor looked at the xrays today and told us that they looked pretty good. There has been no damage to any of the bones that they can see, so this is good news! The ortho guys said the best therapy for Austin right now would be swimming. OK??? Where's the pool???? Last time I checked, there wasn't a pool on 3B! Well, since it's kind of obvious Austin won't be dipping into the water anytime soon, I guess we'll settle with a physiotherapist coming in to work with him for now. I imagine we'll be hearing from one on Monday.
What else?? Platelets - five days in a row now. He did get single donor yesterday, but didn't make much of a difference, platelets were 11 today. He needed red blood after my post the other night. His platelets were at 30 the night I posted, but dropped to 15 yesterday morning. It was scary yesterday when we were told there were no platelets in the hospital for him. Thank goodness they must have sorted things around so that he was able to get them after all. I imagine though that meant someone else didn't get the platelets they needed until later in the day. Today he got single donor again, so hopefully we'll see a better response tomorrow!
Uncle Dave came for a visit today. He and Austin had fun playing ExciteBike. Dave had asked Austin something about going home, and Austin said he really doesn't mind staying here longer, because the longer he stays, the bigger the hug he'll get from Erika when he gets home.
I'm sure I've missed a bunch, but it's 1:40am and I guess I should get myself to bed.
Love to everyone,
Beth
Wednesday, September 17, 2003 8:44 PM CDT
Today was kind of a nothing day. Not a good day, not a bad day. Definitely not as many smiles as yesterday.
His pain has stayed relatively the same. I guess the good is that they have found the rate of morphine that seems to keep him most comfortable. He hasn't had a breakthrough since we gave him a bath the other day - so not as itchy and no more "wiggly" dreams! Another side effect of morphine is constipation, so we have been keeping our eye on that. He finally had a bowel movement after twelve days of not having one, so that makes us feel a bit better and I'm sure would have to feel better for Austin once things are "working" again!
I would say our biggest concern of the day is that he has needed platelets three days in a row. They just did his bloodwork a while ago to check on his counts tonight. I am really hoping that he doesn't need platelets again tonight. I am guessing from my conversation from the doctor this afternoon that needing platelets twice in one day is not a good thing. I think I told you before that he seems to respond better to single donor platelets. He hasn't been able to get them this way because there is a big shortage of blood products in the city. I think the only way he can get the platelets he needs would be a bigger supply city wide. It's not an Austin problem, nor a hospital problem, but a big "city" problem. It's pretty scary to think what could happen if there aren't any platelets for him if he were to start a bleed. This is a big concern and a scary one. I am going to talk to the blood bank tomorrow to see if there's something we can do to ensure Austin has platelets when he needs them. I'm sure they'll just tell me to pass the word along that more blood needs to be donated. Unlike the states, we can't provide "directed" donations as far as I know. I will find out for sure tomorrow.
The kids keep asking when we're coming home. I miss them so much. It's been ten days since we've been here - I wish I had an answer for them. The doctor told me today to expect a long stay. There are just too many things going on before we are stable enough to go home. Pain, fevers, blood counts and as we expected he is neutrapenic. He finished his fifth day of chemo, so now it is a waiting game. At best, the doctor hopes this round of chemo stops the progression and a second round would be necessary to start tackling any disease. Oh, the mommy in me says - just wait and see - he's going to fool you all.
Lots of love,
Beth
Tuesday, September 16, 2003 9:51 PM CDT
Just quick, Austin had a better day today. He woke up with lots of smiles this morning and I just loved watching him giggle when Glen was in visiting. Brenda had brought him a radio, and Glen and I watched with tears as he bopped his head and made goofy faces -
He was a bit more comfortable today, still an effort to move big, but a noticeable difference than yesterday. Tonight he told me he could do something new and showed me that he could sit up using his elbow to hold himself. Big difference. He told me maybe tomorrow he'll be able to sit on his bum. I told him that would be wonderful :-)
His temperature was good through the night, and today he held steady around 38.5. Hopefully that continues. He needed platelets yesterday, and again today. Not surprising as he wasn't holding his counts before the chemo.
He slept most of the day, but when he was awake he was in good spirits. It was a much nicer day :-)
Lots of love,
Beth
Monday, September 15, 2003 8:34 PM CDT
I thought I'd pop in quick to let you know how things were going. Nothing has really changed since I last posted.
The chemo started on Saturday, so today was the third day. Two more to go. So far, Austin has tolerated the chemo well. To tell the truth, I keep forgetting that he's even getting it. I guess that's a good thing, I would hate for him to have chemo crappies on top of everything else. His blood counts have already started to drop, and I expect that tomorrow he will be neutrapenic. Since he is still having high fevers, he will have to go through the ordeal of being cultured. I'm not looking forward to that.
His pain is being managed a bit better than last I wrote. They increased his morphine again which seems to have helped. He is still guarding his arms quite a bit, but once in a while seems to relax and move them around a bit. It is still taking extra effort to move those legs around. Yesterday he asked me to cuddle him on his bed, so we had a few "cuddle" sessions since and it feels so good! I am able to rub his legs and arms without him screaming at me, so this is good!
This afternoon, he needed his port needle changed, so I was able to get him in the bathtub. I thought it would be absolutely horrible for him, but it turned out he had a really good bath. He was able to lie down in the tub and didn't seem to be in any discomfort. Not long after he finished his bath, Brenda and the kids came for a short visit. He enjoyed their company and supervising them as they played Game Cube. After they left, he quietly watched a Pokemon movie and fell asleep for the night.
I am so touched by all of the guestbook entries, thank you so much! I am off to check on my little man,
Good night,
Love Beth
Friday, September 12, 2003 10:55 PM CDT
It has been such a busy day. This morning my girlfriend Lynn brought Erika to see Austin. The two of them were absolutely adorable together. Austin allowed Erika to lie in bed with him and they hugged most of their visit. Erika is so understanding of Austin's pain, and was so gentle with him. She carressed his cheek so many times asking him if he was okay. Every time Austin showed discomfort, she would kiss his forehead. It was priceless. Erika rode down to nuclear medicine with Austin on his bed. Austin told her to lay down so she didn't fall off, so the two of them were side by side all the way downstairs. It was cute and sad all at the same time.
Austin was sedated for his MIBG scan. The girls downstairs are so wonderful! They made sure our little guy was well taken care of, and they had no problem entertaining Erika with freezies as we waited for his scan to be done.
The rest of the day was busy trying to keep Austin comfortable. He was pretty uncomfortable when we came back upstairs, probably from all of the shuffling around to get him back and forth and during his scan. He seemed to quiet down a bit after a morphine breakthrough. His blood counts are hanging in there. Since Monday, he has needed a red blood transfusion and two platelet transfusions. This morning's platelets were 49, so it was surprising to see that he had started a nose bleed. They decided to transfuse again this afternoon even though the afternoon bloodwork showed platelets of 38. His neutraphils are hanging in there, and surprisingly on the upswing without the use of neupogen.
Donna came in for a short visit and shortly after Sharon and Kelly came. Donna came back in the evening with her four kids, and Austin enjoyed watching TV with them and the bit of conversation he was able to muster. We had a bit of a hard time settling him for bed as his pain was getting the best of him and his frustration with everything was clearly evident. He is still experiencing high fevers and still feels pretty crappy.
The doctor came around late in the afternoon to discuss the results of the MIBG. The radiologist had called up to the doctor shortly after the scan to let him know the news was not good. To put it in simple words - Austin's bone marrow is packed. His MIBG scan showed immense uptake in all of the bones. The tips of the femur (going into the hip) both have concentrated bone marrow disease, causing the inflammation in the joints, causing the pain, causing the fevers, causing the unwellness. A chain reaction by the sounds of it. It was not the news we wanted to hear, but didn't come unexpectedly. The doctor has leaned on this theory all week, but just needed confirmation. Well, now we have it.
I had already played this scenario out in my head, so went into our meeting prepared to discuss what we were going to do if we indeed got this news. The doctor admitted that he too played everything over in his head and was even distracted from his meetings today with thoughts of Austin. It's a good thing we think alike, because it took five minutes to decide that we need to go back to what we know has worked in the past, our old faithful, Topotecan / Cyclophosphamide. We will start chemo tomorrow, and if our prayers are answered, we are hoping for some sort of relief from the pain that Austin is experiencing. Austin has ALWAYS responded in the bone marrow to this combination, so we all agree this is the very best we can do for him now. It makes no sense at this critical time to move on to something unknown and unchartered. In our minds, it just has to work.
Our immediate concern is the pain that is in his hips. The only way to relieve his pain is to free up some of the disease that is concentrated there. The doctor is nervous that if we don't see relief soon, there is a possibility that Austin won't be able to put weight on his legs again - ever. To me that is unimaginable - and we won't even go there. He did give us the hope that if that were ever to happen - there would be possible ways to resolve such a problem. Is it so wonder I think the world of this doctor - he's always thinking three steps ahead, offering us hope even in our darkest moments. You gotta love that :-)
It's late, and my mind is tired - and I'm sure this journal entry is pretty jumbled. I'm off to bed with the hopes that tomorrow will be a better day!
Good night,
Love Beth
P.S. to Mary - thank you for the great gift bag you left for Austin. Sorry we missed you - hopefully we can catch up next week - you know where to find us!
P.S. to Kristen - that was very sweet of you. How did you ever know we were having a Sponge Bob kind of day? The timing couldn't have been better - very cool! I had just brought Austin a sponge bob balloon and we had just finished watching a Sponge Bob movie when Cathy gave me your "little something" for Austin! Thank you so much!
Thursday, September 11, 2003 10:20 PM CDT
If you haven't read my update from yesterday, it has been moved over to the history section. You might want to read that before tonight's update.
Hello,
Austin had a better day today now that his morphine has been increased. He had many awake times today and looked comfortable as he watched TV most of the day. His spirits were a little better too. He is still not able to move his legs and it still takes every effort for him to shuffle around in his bed. Of course, he has to do everything himself, so the simplest chore of turning over takes forever and alot of determination. He is still spiking fevers to 40C with little relief from Tylenol. The cultures are still coming back negative, so they still don't know what we are dealing with and want to be very sure before they choose their course of treatment.
It has been so long since we have stayed here at the hospital that I see alot of differences in the way Austin is coping. Although he is not bothered by the fact that we are here to "fix" him up, he is bothered by a few things. The little bum got me to tape a sign on his door that says:
If my mom is not in the room,
Please do not touch me,
Please do not take my temperature and DO NOT make me take liquid tylenol.
Austin :-)
P.S. Please do not ask me if I have to go pee, if I do, I will tell you.
He's so cute. Today he wanted to add to his list but I told him if he makes it too long, the nurses won't take the time to read it and won't respect the most serious rules he has ordered out. He wanted to add:
Don't knock my bed, don't rub my back when you're talking to me, don't touch my Sponge Bob balloon, and don't hug my stuffed dog. (And he wanted me to tell the doctor to please stop leaning on the bed whenever he comes in to talk to me). Could it be our little Austin is just a wee bit of a grump??? Well, I'm very sure it has something to do with the morphine. The first few days, the poor little thing was having "wiggly" dreams. When the doctor asked what a wiggly dream was he told him that his head keeps doing flip flops over and over again, and sometimes his bed feels like it is upside down. He has woke up many times telling me to make the "wiggly" dreams stop. Since we've upped his morphine drip, he hasn't needed a breakthrough, and thank goodness, he didn't have any wiggly dreams today. Another side effect he has been experiencing from the morphine is itchiness, which Benedryl gets rid of quickly.
So today has been pretty quiet, as we expected. Tomorrow he will have his MIBG scan which should fill in alot of missing pieces. I will let you all know as soon as I can, hopefully we will have some answers sooner than later.
Aside from everything going on with Austin, the ward has been very quiet today. The rooms are all filled, the staff is still going about their business as usual and it seems there is as just as much noise as any other day. Yet, today it seems very quiet. I am sitting here today still not really believing that Rebecca is gone. It all seemed to happen so fast, even though we knew it was going to happen soon. Trish wrote an absolutely wonderful journal entry about Rebecca, so if you haven't already, please read it. Trish always has her way with words, something I have always found difficult.
Tomorrow is a busy day so I should get off to bed.
Good night,
Love Beth
Wednesday, September 10, 2003 10:41 PM CDT
So much has happened since my last update that I apologize for not doing it sooner.
I am writing this update from the nurses station in the hospital, so it will have to be short. I promise to keep you updated as much as I can, when I can.
Just so we don't forget ... last week was a great week! Austin was able to go to school three days and had a great time. He was excited to go, and was excited to tell me all about his day when he got home. He had clinic on Thursday, but was able to spend a few hours with Tamara, his home teacher in the late afternoon. It was a busy week with the start of school, and seemed to be the first "normal" week around the house in a very long time. Erika and I spent a great one on one week which I haven't been able to do very often. I enjoyed every minute of it!!
Austin came home from school on Friday in great spirits and had lots to tell about what he had learned that day. He had mentioned that his leg was starting to bother him at school and when he got home he seemed to be favoring it quite a bit. By the evening, it was comparable to what he had went through the weekend we spent up north. He wasn't able to put weight on it, and it was hurting him quite a bit.
He woke up Saturday morning with both legs hurting him but seemed to be handling it okay, but needed to be carried as he couldn't bear any weight. I started giving him Tylenol, but it didn't seem to help much. Not much had changed on Sunday, and I tried Tylenol / Codeine, but again didn't seem to have much of an effect.
Monday morning, we went to clinic for what we thought was the start of our two week course of chemo. By the time we got there, Austin had started to look unwell, his legs by then were hurting quite a bit. The doctor took one look at him and made the call to admit him to get the pain under control before starting chemo. She started him on Morphine, and even that didn't seem to be helping. By afternoon, he was having an emergency MRI. By now, he was in obvious pain and there was no way he could get through the MRI on his own and needed to be sedated. The doctor's first thought was that his spine was being constricted. Thank goodness, the MRI showed that there were no tumors on the spine. Since that was their best guess and were obviously stumped when they didn't see anything, they decided to scan his hips. The MRI showed that there was fluid buildup in both hip joints. While he was still sedated, they called the radiologist in to do an ultrasound guided aspirate to draw the fluid. This can help determine if there is an infection. The fluid has been sent for tests and as of today, there is still nothing showing. It can take anywhere from 24 hours to 7 days. While infection seems to be a good guess, it is very possible that this is all related to disease. Until we hear for sure what we're dealing with, for now we are concentrating on keeping his pain under control. Up until late this evening, he seems to get hour spurts where he is comfortable enough to carry on a usual "Austin conversation". Other than that, he has been in great pain. Tonight they have doubled his morphine, so hopefully that will bring him some relief. He has had high fevers since Monday and has eaten enough Tylenol that he is so tired of taking it.
Today he had a CT Scan and Bone Scan to help them further determine what we could be possibly looking at. Both were done under sedation.
This by far has been one of the hardest, if not the worst, week of Austin's furious battle with this nasty disease. It is heartwrenching to see him in so much pain. I pray that they find answers soon so we can get on with helping him feel better.
I will try to keep you up to date on what is going on. Hopefully, we will have a good idea by Friday what we are dealing with. Chemo has been put on hold until they figure out what is going on - he has been on antibiotics since Monday - just in case.
It has been a tough week. It deeply saddens me to tell you that tonight, Rebecca, our very special "hospital" friend has passed. Please keep her family in your prayers.
Gotta go,
Love Beth
Thursday, August 21, 2003 CDT
Today’s counts:
WBC 1.0
Grans. 0.2
Hb. 78
Plts. 13
I don’t know how else to describe how Austin is feeling other than - pretty sucky. We were sure hoping that Monday’s transfusion perked him up enough to romp around like we’re so used to seeing. Other than the occasional burst of energy, well I wouldn’t even call it that, he has been so tired. I wish I could tell you all he is feeling wonderful. I am so worried about him. His two blood transfusions on Monday didn’t give him the boost he needed. We checked his counts the next morning, his platelets went from 16 to 31, and hemoglobin from 70 to 84. These aren’t great responses.
Today we ordered single donor platelets to see if that will give him a better response. I am concerned that he won’t hold on and will need platelets before Monday. We didn’t transfuse red blood today, we will do that tomorrow - so hopefully he will have a lot more energy for the weekend. We will also need to watch for fevers because he is neutrapenic. It sure would be nice if his numbers magically rebounded tomorrow :-)
We are looking forward to our family’s corn roast on Saturday and of course Austin’s birthday on Sunday! Austin’s first & main concern about the corn roast is whether or not Uncle Eric is bringing his chicken stew. He asked me last night “how does he make it taste so good. Of course, he’s looking forward to Sunday. I can’t believe we will be celebrating his eighth birthday. A big part of me never thought we would ever see this day, and here it is ... only three days away! This will be his fifth birthday since he was
diagnosed with cancer ... what an amazing milestone!
Friday, August 22, 2003
WBC 1.0
Grans 0.2
Hemoglobin 75
Platelets 86 !!
We’re feeling much better with a good response from the platelet transfusion yesterday. Today he received a red blood transfusion and I’m sure he’s had a good response. Tonight he was running around playing and riding his bike. He feels much better ... it was a welcome sight after having such a “sucky” week!
Monday, August 25, 2003
Whew ... Thank goodness it’s MONDAY! The weekend was very busy but I think we pulled it off. Saturday, we hosted our annual family corn roast. It was nice to see everyone again! The weather couldn’t have been more perfect. I missed all you guys that couldn’t make it, hopefully next year EVERYONE can come! The kids had a lot of fun with their “cousins”. Austin was feeling pretty good all day. He was pretty surprised (and a little overwhelmed I think) to be given a birthday present. How wonderful of you all!! He had been given a hovercraft, a remote control boat that they were thinking he’d have a ball with in and out of the pond. I imagine when they came and saw our pond full of algae & weeds they were a bit disappointed! Unfortunately, our pond is in great need of some TLC. Austin thought it was pretty cool, but was okay with Michele taking it back and returning it for something he might get a bit more use out of. The day went by so fast, we had a nice night around the fire. Erika performed a few songs for everyone and a couple of camp fire stories. She cracks me up! All in all it was a good day! Austin pooped out around 10:00 and asked to go to bed. When I asked him if he was going to bed so he could be eight faster, he said “No, I want to wake up and see my decorations and play with my balloons”. I always put balloons in the kids bed and do up the kitchen with streamers and banners. He was pretty happy to wake up in the morning with “eight” balloons stuck to his door!!
The kids had a pretty quiet morning Sunday waiting for all of Austin’s birthday guests to arrive. Once everyone was here, the day seemed a bit crazy. There were ALOT of kids!! Austin had a good time, although he had so many friends here that he’s used to playing with one on one, he had a hard time knowing what to do with “ALL” of his friends at once! It was such a busy day for me, I can’t even believe that I didn’t take ONE picture until it was time for presents. Austin was sooooo slow opening his presents, I’m not sure if it’s because he wanted to savor the moment, or he was just a little overwhelmed by all of the attention. He loved all of his presents. He totally loved his Sponge Bob cake, of course he had asked if it could have Pokemon on it too, so he picked out a couple of his figurines to put on it, along with a Bart Simpson figure. Quite the combination :-) The kids were all edging him on to put his face in the cake, as it has become sort of tradition for him. He didn’t do it, but did get Aaron, Amber & Dustin to fill in for him. The day was long and somewhat chaotic, but the main thing is Austin had lots of fun sharing his day with his family and friends!
The kids spent most of Monday playing with Austin’s new toys; battling Yu-gi-oh, zooming remote controlled cars around and playing with his new e-reader (for gameboy). He was pretty happy to finally complete his Pokemon collection with the newest game for his gameboy, Pokemon Sapphire. Gotta catch them all you know!
Thursday, August 28, 2003
Sunday, August 24, 2003 8:13 AM CDT
Monday, August 18, 2003 4:44 PM CDT
Today was another long day for Austin in the clinic. We expected it to be, so I guess that makes it feel somewhat shorter, although I'm not sure Austin feels the same way! Todays counts were:
Hemoglobin 70
Platelets 16
WBC 2.3
Grans. 1.0
The drop from Friday's hemoglobin (82) was apparent all weekend as Austin was pretty sluggish and pale looking. Twice he fell asleep at the kitchen table. He was also bugged by a sore throat and a low grade temperature. By last night, I was concerned that he wouldn't be able to tough it out until morning - but he did, bless his little heart! It also worried me as he had a bit of bleeding from his gums and had some pretty good bruises popping up. I was a little surprised to see his platelets at 16 since he woke up this morning with blood blisters on his lips. They transfused platelets and red blood today, so he should be good for a few more days at least! He also received both chemos today. His IV was going straight from 9am to 3pm. He had a great three hour benedryl nap, which probably made his day zip by quicker!
Before I forget, I just wanted to let the Girard's and the Glusica's know that we loved your welcome sign at Camp! It was a nice surprise, thank you!
SIX more days until Austin's birthday - the countdown in on!! He's very excited :-)
Will let you know how the rest of our week is going,
Love Beth
Friday, August 15, 2003 7:13 PM CDT
Austin's first week of chemo is over, and now he can rest for a couple of days before doing it all again next week. He has tolerated everything very well so far and is feeling much better. By Wednesday his leg pain was totally gone and his spunk was back! I would think that my theory about the neupogen is probably the cause, I'm not convinced that two days of chemo would do the trick. I guess we'll never know, and I guess it doesn't really matter - the important thing is that he is not bothered by it anymore!
The chemo in clinic has worked well all week. Other than Monday and today, we were home by noon. Today we were a bit later because he needed platelets again. It seems he is needing platelets twice a week now. I'm not sure if this is a sign that he is not recovering from the MIBG treatment, or if it would be from disease in the marrow. Probably a little of both. His energy level has been on the low side as well. He will be transfused red blood on Monday so this should make him perk up! Hopefully he isn't too sluggish over the weekend.
He was feeling well enough to spend a few hours each afternoon with his teacher. She was able to work with him until Wednesday and then will be off for a week. She is getting married this weekend. Tuesday they had fun in the kitchen and baked chocolate chip cookies. I can't remember baking cookies in grade 2, what gives? Well, I guess Austin read the recipe himself, gathered the ingredients and followed all of the instructions, as well as learning how to measure. What a great idea! For homework while Tamara is away, Austin is practicing a play that he will present to me when she gets back. Aaron and Amber both have parts, so they will be helping him practice. They are doing Jack and The Beanstalk. Erika is a cow. She's already got her part down pretty good!
Not sure what we're up to this weekend, I know that I for one am going to try to catch up on some sleep! Hope everyone is getting through these power outages. How terrible :-( Everyone stay safe! (We never did lose our power, thank goodness!)
Love to everyone,
Beth
P.S. For those of you who keep up on the guestbook entries, I just wanted to make sure that there wasn't any confusion. Austin does NOT have cancer IN or ON his brain. He has tumors in his sinus cavities. Thank you all for your messages, they mean more than you know! Love B.
Tuesday, August 12, 2003 7:21 PM CDT
Well, where do I even start?
The last few weeks have been extraordinarily busy, I haven’t had a chance to catch my breath. We’re not close to being not so busy, so I am taking a time out to update you all on what has been happening around here.
I mentioned that the kids were going to tell you all about our week at Camp Trillium, well that didn’t work out so well. They started their journal entries and left off after sitting at the computer for only a few minutes. So I will jump in ...
The kids and I had an amazing time at Camp Trillium, a camp that is designed for cancer kids and their families. Words can’t describe the incredible care that we received while we were there. From the minute we pulled into the camp we knew we were in for an experience of a lifetime. We were welcomed by the counselors all lined down the roadway dressed in different animal costumes pretending like we were driving through the African Lion Safari. The kids didn’t quite know what to make of it at first as they were all pawing the van, and rolling all over the ground, looking back now it was an awesome way to get them into the spirit of camp! We were greeted by the kids’ "special friends”, Des, Jessie and Sara who over the course of the week became very good buddies with each of the kids. Between the three counselors, the kids didn’t want for anything the whole week. They basically did whatever it was they wanted to do the entire week. Their “special friends” spent most of the day with the kids, less an hour after lunch and an hour after dinner. From the 7am fishing and 8am polar bear swims right through to the camp fire, kids lounge and cabbage patch land (bedtime), they all stayed extra busy all day long. There was always something going on for them. It was an experience that they will remember the rest of their lives! Here are the beginnings of what was supposed to be their journal entries:
by Austin Davis
I had a very very good time at camp trillium the councilors were very very fun a specially Des. I loved the F.A.B really (Fishing, Archery and Beebee guns) I caught 2 fish but Aaron caught a about 70 fish (Really, it was 27!) I had very fun at wall climbing I made it to the top.
I made a craft it was Tony the Tiger mask.
by Amber
When I got to camp I met Jessy Sara Des. They showed us the cabin the arts and crafts room, the swimming area, the parents lounge, bell tower, the playground etc. At 8:00pm we had a camp fire and sang songs.
By Aaron Davis,
I had a bomb at camp Trillium. Rainbow Lake was pretty warm. All the counselors/special friends were the nicest people I had ever met.
Dictated by Erika:
Mom asked “What did you do at camp??”
Play. Go to the playground. Go to our cabin. Go to paint hands. My special friends were Sara and Jessie. We goed to the playground and the daycare. I ate breakfast, I liked it. We sang lots of songs. We read stories. Barb scratched my back. We went swimming. We had campfires.
It was something else to watch these kids enjoying life so much. These kids struggle through so much. Not just the kids with cancer, but the siblings as well. What a great way to show ALL of the kids just how special they are
The camp was from Saturday to Thursday. It was unfortunate that Austin had a day of scans booked for Monday. There was no way to rebook them, so we had to disappear for the day, not that it was a big deal for the other kids - they got to hang out with their “special friends”, and Trish was there to help out when they weren’t able to. He had a CT Scan booked for 9am and an MRI for 2pm. It worked out better than I thought with the time gap as he needed a platelet transfusion. Austin was excited to be getting platelets, this meant he could go rock climbing when he got back to camp :-) There was still no word about test results, so we were able to enjoy the rest of camp knowing that his eye looked so much better - so of course we would hear only positive news when we got home!
No such luck :-(
With the keys still in hand, coming through the door from having one of the best weeks of our lives, the phone was ringing - none other than Austin’s doctor with the test results. The MRI, MIBG and Bone Scan all showed good response in the area around the eye and sinuses. There are quite a few different areas in the head that had disease, and all of the spots had shrunk considerably. Still there, but much less! HOWEVER, (oooohh, I didn’t like that word), the MIBG scan also showed diffuse abnormal uptake in all of Austin’s long bones. Scattered uptake all over, from ankle to knee, knee to hip, wrist to elbow, elbow to shoulder, pelvis and vertabrae. It was also showing up on the bone scan, but not as predominant. The radiologist’s report suggested that the neuroblastoma had progressed in the bone, which in fact the bone marrow biopsy confirmed. Austin’s bone marrow biopsy reports that 30 percent of his bone marrow has been replaced by neuroblastoma cells. This news is devastating and so discouraging. I still cannot believe that after all of this time (two and a half years) of having stable disease in the marrow, it picks now to go crazy. Why???? after a mega dose of systemic radiation would his bone marrow not have been completely cleared of this nasty disease (forever I was hoping). I don’t understand how it could have become bulky disease so fast, and I guess there isn’t a doctor in this world that could answer that question. Neuroblastoma is by far the most unpredictable types of cancers there could be. It was news that was totally not expected and to say the least, Glen and I are totally crushed to hear that we have just lunged ten steps backwards.
I spoke to the doctor in Philadelphia, who was considerate enough to call me himself to discuss his recommendations. After reviewing all of Austin’s scans, he felt it wasn’t in Austin’s best interest to continue with the MIBG therapy, in fact it would be life threatening. Although he had some good response, he has also had progression. I suppose one cancels out the other. The idea for a second MIBG would be to rescue the child with stem cells after the injection, as their bone marrow (good cells) would most likely be wiped out. If the MIBG didn’t work on his disease in the marrow, that means that all of the good cells would be wiped out, leaving only the cancer cells, in turn not leaving room for new stem cells to grow. I am comfortable (although very disappointed) with his decision not to pursue a second treatment, and half expected it, as I had these same fears after hearing the news of his bone marrow. I have read about a couple of children in this same situation after the first treatment and had no room to recover. This is the unimaginable, a full circle so to speak, as the disease in their bone marrow is actually disallowing the chance for treatment by crowding the good cells required to continue with therapy. I thank God that Austin has at least recovered from his first treatment and is able to continue on with further therapy. So, here we go again.
The doctor from Philadelphia has recommended Austin to begin chemotherapy to try to get the bone marrow back in check. He also recommends to check the bone marrow after a couple of rounds to see if there has been some response. If the bone marrow has less than 5 percent disease, he would like Austin to receive his stem cells back immediately to allow his bone marrow (good cells) to recover quickly, allowing him to be placed on a further study, using something non-chemo. We’re all in agreement that this is where we need to be, NON-CHEMO. Amen to that, Austin has had SO SO much chemo. My goal at this point is to see that bone marrow back in check, counts recovered and able to do the antibodies in Wisconsin - a Phase II trial will be opening in the fall. In the meantime, all the stuff in his head needs to stay calm while we’re working on these bigger, more life threatening things ... Catch 22 - the tumors in his head didn’t respond to chemo. Pretty scary, but the doctor reminded me that it can take up to four months after the MIBG therapy before knowing how well it worked. IT IS POSSIBLE, that all of the tumors in his head can continue to die and show complete response in a couple of months. I thank God for these doctors that can still provide hope in desperate times, Dr. Maris definitely gets an A plus for doing that. I got off the phone, had my good cry, and am ready to help Austin get through this one more time! If anyone can do it, our Austin IS THE MAN!! (Well, the boy, but you get the drift) .
Our doctor had received an email from Philadelphia with the recommendations. We met with him on Tuesday and had discussed beginning chemo on Wednesday. Our doctor had suggested what he intended to do, which didn’t sit quite well with me as the doctor from
Philadelphia had been speaking of a different protocol to use. When I questioned our doc, he stated that I must have misunderstood. I mentioned my concern a few times through our discussion, but he didn’t seem too interested. When I got home from clinic, with a little nudge, I called Philadelphia to make sure we were doing the right thing. This is where it gets tough being the parent, as you just don’t know where to draw the line. I was very nervous of stepping on toes, as I always am, but needed to be sure I wasn’t “misunderstanding”. As it was, I wasn’t, and the doctor from Philadelphia once again recommended the protocol he had mentioned to me on the phone, as he felt it showed better response. He clarified this in an email to our doctor, who on Wednesday, still wasn’t sure about which protocol Dr. Philly was talking about. Dr. Philly was away until Friday, so our doc postponed the chemo until he was absolutely sure which one to use. Both (our docs, and Philly’s doc) protocols were using the same drugs, just different schedules. So as it is now, we are using the protocol that Dr. Philly has suggested - Vincristine / Irinotecan - two weeks on, two weeks off. We were pretty disappointed not to have started the chemo last Wednesday, but as it was Austin had a pretty busy day. He needed a platelet and red blood transfusion. This topped him off enough that we weren’t needed in the clinic until Monday. A MUCH NEEDED rest away from all of the headaches!
By Wednesday evening I was by far the most physically and emotionally drained I have been in a very long time. I was so tired driving home from clinic that I am totally amazed that we didn’t end upside down in a ditch. But of course, Austin was with me and we all know God has taken very good care of our little one! You can imagine how blown away I was when Glen came home from work and announced that he wanted to pack our bags
and head up north until Sunday. WHOA!! I cried for a while thinking about how I absolutely couldn’t muster the energy to pack up six people and head off for four days on a whim. It was 8pm and he wanted to leave by 5am the next morning - oh my goodness, I prayed for God to give me strength - and since he is such a good God, he did, so away I went and we packed up the van. We were on the road by 7am the next morning, not knowing where we were going or where we were going to stay. Glen had packed a tent for “just in case”. A TENT???? I haven’t slept in a tent since I’ve been a teenager - what was he thinking??
Well, I guess he was thinking that we all needed a break away together. Since he didn’t do Camp Trillium with us, it was good for us to ALL be together and spend some time away from the headaches of home. He was absolutely right, it was good to get away and have some down time. On Thursday morning, we drove up to Tobermory and took the Ferry across to Manitoulin Island. We found a cabin in Little Current and made that home
base for Thurs / Fri. It wasn’t the nicest of cabins, a little dirty for my liking and not the greatest of views, but it sure beat sleeping in a tent. Friday we spent the day exploring the island. Saturday, we found a resort about half hour away from the first one in Honara. It was just the type of place we had wanted to find and we absolutely loved it there. Since we didn’t get to spend much time there, we are planning to go back for a week next year. I think we may have started a new family tradition! We came home late Sunday night (1am), just in time to catch a little shut eye before taking Austin to clinic for his chemo, which he started yesterday.
He received Vincristine and Irinotecan yesterday, and will continue to receive Irinotecan every day this week (in clinic). Next week he will repeat this week, then he will have two weeks off. Yesterday was a bit of a longer day because he needed a platelet transfusion as well. I forgot to mention the part about Austin waking up Friday morning totally not himself. He started to have leg pain, that continued through the weekend and is still having today. It was hurting him all over, and he said it felt as though his bones were falling apart. It hurt to touch him. He was having trouble walking up and down steps, so we basically have been carrying him up and down stairs and helping him get up after he’s been sitting for a while. It’s been heart breaking to see him in pain. I am scared to pieces that his bone marrow is the cause and it has gotten much worse since his biopsy three weeks ago. I realized last night though that our little guy has been getting daily neupogen injections since the middle of June. Neupogen can cause bone pain after only a few days of use, so I am praying that this is the case and the aches are caused not by disease, but by the shots. He had to stop the neupogen Sunday night before starting the chemo, so I guess we won’t really know if the chemo is helping him feel better, or if it’s because we stopped the neupogen. He does feel alot better today, in fact, he has talked more today than he has in a whole week. He looks and sounds much more like our little Austin!!
So, life has been crazy around here and it’s not about to let up any time soon. I promise to keep you more up to date as Austin gets through this two week chemo.
Thanks to all for checking in,
Love Beth
Saturday, August 2, 2003 9:47 PM CDT
Hello,
I haven't forgot about all of you out there! Sorry it's been so long since I have updated. We just got back from Camp Trillium and I am working on an update. Actually, the kids are working on an update and it's taking a bit longer than I thought! I promise to get you all caught up very soon.
We have the results from Austin's scans back. Always with Austin, it can never be simple. The results are very confusing, and I will fill you all in as soon as I can. Please keep praying for our little boy - it just never gets easier.
Sorry to be so short, but I just wanted to check in quick with all of you!
Take care,
Love Beth
Thursday, July 24, 2003 1:46 PM CDT
Hello,
I don't usually like to update you all on Austin's scans until we get all of the results back and know for certain the "whole" picture, but I couldn't wait to give you all this positive "bit" of news:
From what I saw (and remember, this is not from the doctor) on his MIBG scan this morning, I am 99% positive that there was nothing showing up. His scan looked wonderful! Even the techs had (happy) tears in their eyes when they saw the comparison from June's scans. I'm torn between being excited and knowing that there are still more scans to be done and we still don't have the "whole" picture. Even still, this is great news, that scan could have very well said that there was no response, or worse yet, progression - but it didn't - it tells us that he has responded beautifully to the treatment in Philadelphia.
In reality though, before his last MIBG scan, the disease in his sinuses weren't showing up on that particular scan. So it is still very possible that the disease hasn't changed any in that sense, or still worse, it might have progressed. We will only know this from the MRI, which will be done on Monday. I am praying that we see an improvement in those areas, as it has been those tumors which have been stubborn since last September. I also spoke to the doctor this afternoon, who told me he saw something in the bone marrow aspirate. I'm not letting that get to me until I see the results from the biopsy. In early June they thought they "saw something" on the aspirate but the biopsy showed no disease. I was quick to learn that we can't be fooled until we get the "whole" picture!
Thought I'd share that bit of news :-) I should be off, I have alot of catching up to do around this house - either that or I see the boys are getting the markers & paper pads out - that looks like more fun, maybe they'll let me join in?
I will be sure to update as soon as I get some "official" results!
Love Beth
Tuesday, July 22, 2003 8:29 PM CDT
Yesterday’s counts:
WBC 4.9
Grans. 2.0
Hb. 100
Plts. 19
For feeling like we’re not doing much around here, I sure do find it hard to find time to update you all on what Austin has been up to!
Last I posted, Austin’s counts went for a nose dive, but since have looked fairly decent. Friday’s counts made going into the weekend feel much better as he got a good boost from last Tuesday’s transfusions. I was very happy to see that his grans. hit 1.0! (ANC 1000) He’s been feeling pretty good and looks great. His hair has come in and is finally getting some thickness to it. Daddy actually had to trim it up around the sides as it was getting too long over his ears! He has the cutest little two wings sticking out at the back :-) Of course, we’re back to the battling about whether or not to keep it short - Mommy of course would love to see those curls again, Austin on the other hand already stands firm on keeping it nice and short! How ironic, Aaron and I have been having the same battle, except I want his cut short and he insists on never getting it cut again. Thank goodness the girl’s don’t seem too concerned with their hair (Boy, I guess that will change soon enough won’t it??)
After Friday’s clinic visit and feeling a bit better about his counts, I had to give my head a shake and stop worrying so much about everything. Believe me, it’s hard to do! It was a tough week for me - a bad case of pre-scan jitters and the passing of a little girl that I’ve been keeping up with through caringbridge over the years. I found myself sitting at the computer an awful lot this last week, reading new stories, old stories and bad sad stories about kids battling neuroblastoma. It was feeling as though I was getting a bit obsessive - Not good - so enough of that, I’ll stick to the few regular’s that I check on and give myself a rest from meeting all too many families in this neuroblastoma world for a while.
Enough about me and my moods. Saturday was the perfect day to put all that and more on the back burner. We went to Canada’s Wonderland and had a great day. The weather was perfect! We started the day off with the Help a Child Smile picnic. It was good to see some families that we haven’t seen for a while, and sad to see that a lot of families were missing. I was most happy to see Bosko and LOVED being able to “talk” with him! It was also great to see our little buddy Kurtis, handsome as ever! We miss you guys! The kids had fun at the waterpark and loved the few rides they managed to all agree to going on. Erika stayed with Nana for a sleepover, which made it alot easier to stick to the bigger rides - but it seemed that most rides were either “too kiddy” or “too big” for at least one of the three kids. Amber and Daddy had the most fun as they both braved a couple of the “bigger” rides. Aaron wanted no part of almost any ride and Austin was too little for “all” the rides he would have liked to go on. We figure it will be at least two more years before he’s able to get “adventurous”. The SpongeBob 3D show was hilarious, and got five big thumbs up! While we were waiting in line for SpongeBob, Trish was on the other side of the park, 150ft up, hanging from a cable. What a nut! We were all disappointed that we missed Wonderwoman in action! Maybe she’ll have to do it all again next year so that we can all watch! As the park was closing, the kids were running around trying to fit in one last ride. Daddy and Amber were doing The Sledge Hammer, while Aaron and Austin chose a little less thrill on the Swing of the Century. Well I thought it was a pretty “safe” ride, but I guess you just never know - as Austin was getting out of his swing, he undid the seatbelt and a chain whipped up and smacked him - guess where?? - yup, right in the eye. Right in the corner and good enough that it broke the skin and started to swell right away. OF ALL THE PLACES on his body??? What a turkey!! We took him over to First Aid to get some ice, but the paramedic told us that the damage had already been done and the swelling most likely would get worse before it got better. I prayed it wouldn’t hemorrhage again, as I’ve told you his eye is looking so much better than six weeks ago! The poor paramedic thought that his black eye was from being hit with the swing - I only wish! Luckily it looked fine in the morning and hardly swelled at all.
Sunday we were able to rest up for our busy week of scans. It was such a rainy gloomy day that we stayed in and started a 3D puzzle of the Empire State Building, or as Erika says the Vampire Estate Building!
Yesterday we started our week of tests off with a bone scan. I could immediately see the improvement over the last scan, but of course have to wait for the report from the radiologist. I did speak to him briefly after the scan and he quickly told me that his eye looked much better and the uptake seen on the hip pre MIBG tx. was gone! Of course the MIBG scan on Thursday will tell us much much more, as it will compliment the bone scan
and determine the amount of disease present. The BIG one will be the MRI next Monday to see what is going on in the sinuses.
This morning Austin had his bone marrow aspirate / biopsy done and as usual everything went very smooth. He needed a platelets transfusion before the procedure, which poor little guy, knocked him right out. Having to have benedryl on an empty stomach isn’t a good combo! He actually fell asleep sitting up on the examining table after being checked. He fought hard to keep his eyes open while the doctor was talking to him. He slept over an hour in the clinic. We had to wake him up to take him over the ward to get his sleepy medicine! He had a pretty good sleep after his procedure and is feeling much better tonight. He doesn’t seem to have any pain at the sites where the pulled the bone marrow, thank goodness - and as usual!
Well, I’m off to pick Amber up from a birthday party and get these kids to bed. We have an ultrasound for 8:30 tomorrow morning and then we’re free for the day. Austin has been asking to get together with Marky so tomorrow sounds good for that. Thurs/Fri he will have his MIBG scan and then the weekend! Hurray!!
Thanks for checking in,
Love Beth
Thursday, July 17, 2003 11:44 AM CDT
Tuesday’s counts:
WBC 1.6
Grans. 0.5
Hb. 66
Plts. 6
Not much going on around here. Austin’s counts surprised us once again on Tuesday, needing both a red blood and platelet transfusion. I was very relieved to see his hemoglobin so low since he had seemed sooo tired over the weekend. Because his counts were looking so good on Friday, I wouldn’t have guessed that he had crashed, so of course I could only think that it must be something far far worse than needing blood. He was having headaches on and off which automatically sent my mind flying! So once again, such a strange thing to be saying and thinking, but yeah ... Austin was anemic!!
Since we got word on Friday that our docs were waiting to hear back from Philadelphia, I can’t seem to think of anything else. Even though it’s only Wednesday, it feels like it’s been an eternity since we’ve been told a second MIBG is likely. I’m not sure if the doc wants to wait until all the scans are done (next week) before we hear back from him. So we wait patiently to see what our next move will be ... please help us pray that it will be another treatment in Philly and that the timing will be just right. I have read a few webpages where the 2nd one was booked way down the road, giving the tumors time to progress in the meantime. This of course, has me worried ... I sure hope we are able to go back within a reasonable amount of time since getting the first one!
All of this worry and stress is something we have to deal with, luckily Austin can just be Austin and go on like there’s not a care in the world. He’s been feeling much better since his top up on Tuesday, although other than the occasional flop on the floor, he was feeling fine before. He is working very hard with his teacher, who comes on all of his off-clinic days. Doesn’t leave much time for getting out, but the kids seem to be having a good enough time hanging around home!
You know, I wish I could jot down all the things going through my mind as I lie in bed at night. I always think I know what I want to write about, but when it comes time to do these entries, I always go blank. Maybe I should get a tape recorder and set it beside my bed ...
Will let you know how Friday’s clinic visit went,
Take care,
Love Beth
Friday, July 11, 2003 12:52 AM CDT
WBC 1.6
Grans. 0.4
Hb. 88
Platelets 50!!!! (YAHOO!)
IT'S A GOOD DAY :-)
Austin totally surprised us this morning with his counts. We were expecting both a platelet and red blood transfusion and instead we were happy to see that his counts are holding and actually a bit on the upswing!! This is great news!! This is a great indication that his stem cells won't be needed for a bone marrow rescue! It's not written in stone, but it looks good for now.
I spoke to our doctor who has been in touch with Dr. Maris from Philadelphia. They have been back and forth and both decided that Austin has shown clinical evidence of response, so a second MIBG treatment is in the works. We are just waiting for a date!! YAHOO!!
Thought I'd give a quick update, will let you know when we hear back from Philadelphia,
Take care,
Love Beth
Tuesday, July 8, 2003 9:03 PM CDT
Friday, July 4, 2003
WBC 1.5
Grans. 0.3
Hb. 102
Plts. 9
Tuesday, July 8, 2003
WBC 1.2
Grans. 0.4
Hb. 84
Plts. 10
Another quick update to let you all know that Austin continues to feel well as always and it is business as usual around here. Well, that is besides the transfusions, which we were told to expect for a while. Platelets were needed both Friday and this morning and we expect he will be needing red blood this Friday as well. The doctor in Philadelphia had said this is very common and the numbers we need to focus on right now are the white cells. I’ve been waiting for that zero to come but haven’t seen it yet! Knock on wood, maybe he won’t get there! We need those grans. to come up so that he will be eligible for a second round of MIBG in Philadelphia. So everybody think white cells!! We have all of the scans booked for the last week in July, so soon we will know if he responded to the first one. Judging by his eye, I would say he has, but we won’t know until we take a look
inside :-)
We had a pretty quiet weekend at home. The kids had alot of fun playing in the yard and swimming with their friends. Donna & the four kids spent the day out here on Sunday, so that was nice :-) Aaron has been to the beach a couple of times with friends and Amber & Austin have had their share of friends over to play with. I feel guilty that we’re not getting the kids out more, but until Austin’s counts are better, we’re better to hang here. It would be nice not to have to worry about these things!
Not much else to tell, our week has been very quiet. I’ll be sure to update again when there is something a little more interesting!
Take care,
Love Beth
Wednesday, July 2, 2003 11:08 PM CDT
Believe it or not?? I just turned the computer on for the first time since getting back from Chicago. I think I needed to give my brain a rest from all of this nb for a few days. Information overload no doubt!!
Thursday, June 26, 2003
WBC 3.0
Grans. 1.6
Hb 98
Platelets 28
Amber’s birthday party last night was lots of fun! It was good to see her having so much fun. Everyone around here gets so excited when it’s someone’s birthday. Erika got in on the action this time and wrapped up some presents for Amber! It was hilarious to watch as Amber pulled out these gifts from the box, and made such a big deal about each one.
Like “Oh, Erika, a pencil, I’ve always wanted a pencil!!” and it was so cute how Erika got really excited and started clapping like she had won giftgiver of the year!! Amber could see how much it meant to Erika, so kept on with the cherade. My little girl is growing up! I think I told you that Austin had started collecting stuff to give to Amber last week. While we were shopping this morning for the candy he wanted to give her, he found a purple flute and just had to get it for her. Funny enough, Amber asked Santa for a purple flute for Christmas, but Santa couldn’t find one. Austin had enough money saved up that he got it for her. The best part of the day for me was seeing Amber’s eyes light up when she opened it, and watching how proud Austin was for finding it for her! It was very touching. She loved her flower and makeup that he had picked from the treatbox as well! It was a really nice day for Amber - Happy Birthday Sweetie, have lots of fun being 10 :-)
This morning clinic’s check found Austin’s platelets exactly where I didn’t want them to be! Too high for a transfusion, low enough to cause me to worry while in Chicago. After struggling with the idea of going to Chicago, Trish & I both decided that we would go, but cut our weekend short and head home after the meetings on Saturday.
We left for Chicago after Austin’s clinic visit, which made for a late start. We didn’t get going until 3:30, so needless to say we arrived fairly late. After being stopped at the border for a “random” inspection, travelling down a 422km stretch of highway that 2/3 of was under construction, the other 1/3 was full of potholes, and hitting a few huge rain storms, we finally made it there. Trish & I make pretty good travelling buddies, I don’t think there was a lull in conversation for the entire 8 1/2 hours it took to get there ... and I’m sure we didn’t even cover everything we could’ve of! We were excited to get to the hotel to find our buddies from last year, but couldn’t track anyone down since it was so late. It was good to be there, the hotel is beautiful and we started wondering if Saturday was too soon to come home!
Friday, June 27, 2003
Today was a full day of information. The topics covered were:
“Neuroblastoma, Solving a Biological Puzzle”
“A parents guide to pediatric anti-cancer drug development and understanding neuroblastoma clinical trials”
“Epidemiology Studies of Neuroblastoma”
“Is screening for Neuroblastoma Worthwhile?”
“Give up hope? I don’t think so? The who, what, where, why, and when of Palliative Care”
Saturday's schedule:
"3F8 immunotherapy - Sloan Kettering"
""Active & passive immunotherapy of neuroblastoma"
"Novel therapies for resistant neuroblastoma"
"Medical & Psychological Effects of Treatment for Neuroblastoma"
While I was listening to the mounds of information thrown out at us, I failed to take notes. Now trying to repeat everything that was said is near impossible. I understood all of what was being said and figured it would be easy to bring this information home to friends and family, but didn’t realize at the time that there was so much to absorb. Even though most of it wasn’t new, I find it’s hard to even remember what was talked about.
I was very impressed with the speakers and their topics. Each one took a piece of this world we’ve been living for years and condensed into the shortened version. Most I could relate to Austin’s history and future, but most concerning is the fact that once again my worst fears have been confirmed, and the bottom line is our son has a nasty disease which
statistics say will eventually take his life. Bottom line is that he is a high-risk stage IV and he has been unsuccessful in ridding this nb for 4 1/2 years. Not good. On the flip side, I was able to meet the mother of a boy who’s son has been fighting nb alot longer than Austin, and for the first time ever, he just recently had clear scans!! I’ve always looked to them for hope when I’ve needed it, and now that I’ve met mom in the flesh, it makes it more real - there are survivors out there! ... and I truly believe Austin will be one of them!!
I could ramble on about Chicago, but if I ever want to get this post up, I better cut it short. If there are other nb parents reading this and would like some information on the topics covered, I’d be happy to give you my take on what I heard! Please feel free to ask. All in all, the conference was as wonderful as it was last year. Once again, Pat has outdone herself, she is one terrific lady!! Nick would be very very proud :-)
Sunday, June 29, 2003
WBC 1.8
Grans 1.1
Platelets 16
Hb. 80
We got in pretty late last night and I was looking forward to sleeping in this morning, big time! Well, that didn’t happen as I had Aaron nudging me to wake up because he had to be to a birthday party in an hour. Oh well, I can sleep tonight! We all jumped in the van, took Aaron to his party and had a visit with Aunt Sharon while he was there. We picked him up at 4:00.
Early afternoon, Austin started to get petichia (sp??) (red blood spots) on his cheeks, which is a sure fire sign that platelets are getting low. I would have been quite comfortable waiting until tomorrow to have them checked, but the clinic will be closed until Wednesday. Monday is their floating holiday and Tuesday is Canada Day. Even with the spots, I would have waited for a nose bleed or something, but his eye started to get a red patch in the white of the eye, and I got spooked that he was going to develop another hemhorrage. Did I tell you all that his eye is looking much much better?? Still a
bit black underneath, and a wee bit swollen, but much much better!! I would have hated to start all over again because of low platelets.
So we headed off to Emergency at around 7pm. It so happened that his platelets were still a bit above the transfusion mark of 10, but the doctor agreed with me about the eye issue, and transfused his platelets. His hemoglobin was on the low side, but still above the normal transfusion mark, but they decided to transfuse him anyway since we were there. Made sense, if not he would have needed one by Wednesday, and clinic would have been nuts! This way, we’re good for the week without any worries :-) By the time he got both platelets and red blood and we made our way home, it was 3 am. So much for that sleep I was looking forward to!
Wednesday, July 2, 2003
So, here we are somewhat caught up. Austin is feeling just as he should, he’s been having lots of fun swimming, playing and being goofy! Just the way we like it. I know this hasn’t been much of a post, hopefully one day I’ll be able to fill in all the blanks with all of our everyday stuff!
He’s had six hours of tutoring this week already, and his teacher is coming again tomorrow. He is having a really great time learning with her! Last week she told me that she can comfortably say that Austin is reading at a mature grade 2 level, and she can confidently say by the end of the summer he will be reading at an average grade 3 level. Not bad for a kid who could barely read a couple of months ago. WAY TO GO AUSTIN!! We are so so proud of him, as you can all imagine!
That’s about it for now,
Take care,
Love Beth
Monday, June 23, 2003 2:49 PM CDT
Todays counts:
Hemoglobin: 101
Platelets: 44
WBC: 3.8
Grans. 1.4
As you can see, Austin's counts are beginning to drop. Hopefully his platelets cooperate and either hang tight for a week, or crash by Thursday, as Trish and I are leaving for Chicago Thursday afternoon for the Neuroblastoma Conference. More about that later!
Austin is still feeling pretty good. His energy level took a bit of a dive this morning, but I'm sure he'll adjust soon enough. Clinic was a quick in and out this morning, so we were able to be home in time to enjoy the beautiful weather this afternoon.
We had a very nice weekend. Glen and I celebrated our 17th wedding anniversary on Saturday. We decided to include the kids in our celebration and headed to Niagara Falls for the day. We all had a really good time, the kids had lots of fun playing games at the Adventure Dome. We did a glow in the dark interactive ride where you had to shoot things that popped out at you - it was alot of fun. Erika was a bit scared at all the noise though! We did a bit of driving along the Niagara River Parkway, stopping every so often to take in the sites. It's such a beautiful area and as many times as we have been, there is always something new to explore! We finished off the day with a nice dinner and by the time we got home everyone was pooped out!
Yesterday was a bit more relaxed and we hung around the house to ring in the first day of summer! It's been a long time coming, but finally some half decent heat - yahoo - just my kind of weather!! Sorry for all you folks that need to sit around the air conditioner, but I'm loving it :-) The boys spent most of the day around the pond trying to catch a fish. No such luck, but they had fun trying. It's been alot of fun around the pond this year already and it certainly keeps the kids busy. Austin didn't like that they are predicting the weather to be so nice all week, he says now he can't watch TV because he's going to want to be outside all the time.
Anyway, thought I'd pop in quick to say hello. Erika and I are going outside to plant some flowers and the boys are busy working. I'll be sure to check in before we leave for Chicago. Of course, I'm always checking the guestbook, so thank you all who take the time to sign in. It's great to hear from you!
Take care,
Love Beth
Friday, June 20, 2003 2:22 PM CDT
Yesterday's counts:
Hemoglobin: 122
Platelets: 88
WBC: 6.5 (WOW)
Grans: 3.9 (Thanks to neupogen!)
I was a bit surprised to see that Austin's white count zoomed up so fast, on Monday his neutraphils were zero. These are not reflective of the MIBG therapy, these are more or less his own counts. I expect that by next week he will begin to drop from the side effects of the treatment in Philly. It's a bit scary to know that without the neupogen Austin seems incapable of producing white cells. Hopefully as time goes on, his ability to remember how will kick in! This, I imagine is from endless chemo treatments over the past four years - the price to pay I guess.
And yes, through it all, Austin displays an enormous amount of bravery on a daily basis. Each day has it's own challenges, and he chooses to face them all head on with such a positive attitude. If he's not sure of something, he always asks so that he understands. And yes, he understands ALL of it. In Philadelphia, he told Trish & I that he was a bit scared of getting his new medicine. When we asked him why, he said because he knew Ashley had the same medicine he was going to have, and he was afraid of dying. Oh my, he caught us a little off guard, but I think we handled it pretty well! I think he was good with our answers, but the more I thought about it, I realized that he's been carrying around this fear for some time. What a weight for a seven year old to be carrying. I am so thankful that he released his worries before they got so big and unbearable.
So instead, he gets a kick out of worrying his poor mother. He has been freaking me out a bit on his bike, he has mastered riding a two wheeler, that's for sure! His game of late is riding as fast as he can down the driveway and slamming on the brakes, skidding and turning himself around totally to do it again. This without a helmet (I know, bad bad Mommy). I made him a deal though, I told him when his platelets go below 75, he will absolutely HAVE to wear a helmet. Do you think I can maybe talk him into knee pads and elbow pads too?
Today the kids are having their play day at school. Austin was very disappointed that he couldn't go. I didn't think that he could get through the day dodging all the germs, so I had to say no. Even with his counts in the normal range, I am afraid he would have picked something up and be sick for next week's crash in counts. Poor guy, it's really not fair. Although he was disappointed, his day hasn't been all that lost. He was over playing at Nana's for a while, and is now with his teacher for the afternoon. They have been working hard for the past couple of hours and have now made their way outside to do a craft. I heard something about making a nature frame. They went looking over the yard and the roadway to find some things to stick on their picture frame. Should be interesting. Austin is absolutely loving his teacher! He looks forward to her coming and is doing so well with all of his work. He doesn't even complain about the homework he has been getting. He actually does it without being asked!
Yesterday Austin started getting ready for Amber's birthday. Instead of picking something from the treatbox for himself, he picked out something for Amber and has already wrapped it up. Hopefully Amber will appreciate that he took two pokes for her present! Today he asked if I could go into town so he could finish her present. He still wants to get her some candy, and he needs some tissue paper to decorate her birthday bag. He also started a craft project from Home Depot that he is making for Uncle Dave (shhhh, don't tell him), who's birthday isn't until next month. It's very sweet the way he thinks of other people so much!!
So, yes the kids are off school next week. They will go back the first week in September. I am looking forward to having them home and dreading it at the same time - I'm sure you can all relate to that! Austin will continue with his teacher through the summer, the Board has approved 80 hours for him, which is awesome! Sounds like his teacher is committed to using them up, so Austin might just have a busy summer - while Aaron & Amber get to kick back and enjoy the break!
Austin got a kick out of Ellen's guestbook entry. I thought it was quite funny too :-) I can somehow picture Dan & Austin doing that and it makes me laugh every time I think about it!! So, yes, Ellen he is available - unfortunately he left his chicken gear in Philly, so he'll have to pass this time. Maybe next year!
Well, the kids are home from school, I should get going. They both walked in with ribbons from Play Day, Aaron's team came in 1st place, and Amber's 3rd. Pretty good seeing as Amber said "there were like a million teams". Hope you all have a great weekend!
Take care,
Love Beth
Wednesday, June 18, 2003 9:12 AM CDT
Hello again,
Just checking in to let everyone know that everything is going well at home. We're all settled back in and Glen is back to work. The kids are itching for next week to get here fast, their last day of school is next Wednesday, and for Amber - doubly excited, it's her birthday as well!
Our experience at CHOP was a very positive one, from the clinic to the ward, everyone was so nice and made Austin feel so comfortable from the get go. On the first day, Austin was called to get weighed and measured, and in their room they had tons of kid's pictures. My eyes went directly to a little baby picture that I recognized easily. A little boy that I have been reading about for quite some time was treated at CHOP and sadly just passed away the week before we left for Philly. It made me realize that no matter where we go, we are all connected - it was such a warm feeling. I'm sure some of that rubbed off on Austin because it felt like home to him as well!
As I'm typing, Austin is behind me reading Winnie the Pooh to Erika. The two of them get along so well, they just love each other so much! They are always hugging and making sure the other is okay. They are making it hard for me to concentrate on this entry, so I'll have to tell you more about Philly later. OK - now their done reading and playing "guns", shooting each other dead, and reviving each other with huge kisses! Oh oh, the bullet bounced off Austin and hit Erika, now they're both lying there with their tongues hanging out - I have to go give them hugs & kisses to wake them up. Be right back!
They are so funny! Here is a conversation I had with Erika the day before we left for home, she is such a big girl!
Mommy: Hi Erika, how are you?
Erika: Good, how is Austin doing?
Mommy: He's good.
Erika: Is his black eye all gone now?
Mommy: Soon, his medicine will start working soon.
Erika: Can I talk to Austin?
Mommy: No, he's in the hospital, I'm outside.
Erika: Can you go get him?
Mommy: No, I'm outside, and he's in his bed in the hospital.
Erika: Oh, and how are you doing Mommy?
Mommy: (Laugh) Erika, is someone telling you to ask me these questions?
Erika: No
Mommy: You are so smart!
Erika: I know
Erika: When are you coming home?
Mommy: Tomorrow, we're coming home tomorrow.
Erika: Oh, what are you gonna bring me?
Mommy: What would you like?
Erika: I would like a sticker, and a sucker, because I'm very hungry!
Mommy: OK, I'll see you tomorrow
Erika: OK, I love you
Mommy: I love you too
She is such a sweetheart! Thought I would share that, I had to write it down as soon as I got off the phone with her so I would remember every word she said. Some days I can't believe how fast she is growing! Other days she still seems so little, my baby :-)
Austin has clinic tomorrow, so I will let you know how that goes. Just thought I'd pop in quick - I've added some pictures of Philly in the Photo Page. (Thanks Tricia!) I have four (or five?) rolls of film to develop, so I'll be sure to add some more soon!
Take care,
Love Beth
Monday, June 16, 2003 11:33 PM CDT
Oh, it’s been too long since I’ve updated. I realize that you all are checking and worried and I apologize for not being more on the ball! Thank you to everyone who left such wonderful messages in the guestbook, I was at least able to check on them and it helped make me feel closer to home :-)
So, from where I left off ...
Wednesday, June 4, 2003
This morning was Austin’s MIBG scan. It will tell us for sure if he is still eligible for the MIBG therapy. It wasn't a good day ... It started with Austin feeling a wee bit scared when he woke up and couldn’t open his eye. His eye was so swollen that it was totally shut. It looked absolutely horrible. His eye has been getting worse as the days go on, little by little. Of course, we don’t notice as much because we see him all the time. This morning, I realized just how bad it was. Half of his face is black and his cheek is disfigured from the swelling. He toughed it out though, and got ready for the hospital like it was any other day. He did a terrific job for his MIBG scan, I on the other hand couldn’t seem to hold it together. I saw the way people’s faces were changing when they looked at him ... it was breaking my heart. I hadn’t heard anybody make wise cracks about what the other guy looked like, I think it looked pretty obvious that something is terribly wrong with his eye. As I watched the image appear on the monitor, I was happy to see that his eye was lit up bright = yes, he’s still eligible for the treatment in Philadelphia. But how sick is this, it’s just not right that a parent is “hoping” that their child’s cancer is getting worse so that they can try a new type of treatment. As “happy” as I was that his eye was still shining bright, I was totally caught off guard when I saw another bright spot appear on his hip, and then another. I think it was when I saw the spot on his knee, terror set in that our sweet little Austin is full of cancer. Remember that the doctor had told us the day before they thought his bone marrow was packed again, we were just waiting for the biopsy to confirm their suspicion. It was hard to keep it together in front of Austin, I’m sure he knew something was going on, but I think he too was in his own little sad world because he couldn’t open his eye. He just wasn’t the Austin I’m used to seeing, and I hope I don’t ever have to see him like that again, it was a bad day ...
Thursday, June 5, 2003
The swelling in Austin’s eye has gone down enough that he can open it halfway. It still looks so uncomfortable for him, I can’t even believe that when you ask him how his eye feels, he always says “good”. It doesn’t seem to cause him any pain or discomfort, thank God for that.
We (Glen & I and all the kids) left for Philadelphia late this morning. I was up half the night trying to get everything packed as we didn’t get home from the clinic yesterday until 8pm (after a bit of running around as well). We stopped early afternoon at Grampie & Bonnie’s house (Glen’s dad’s). We missed seeing dad, but were happy to visit with Bonnie for a while. From their place, Philadelphia is about a five hour drive. Add four kids and some last minute errands, and it becomes about a nine hour drive! We arrived at our hotel around 11pm. The kids were excited and took a bit to get to sleep. Morning came fast ...
Friday, June 6, 2003
Our consult with the doctor went well. We found the hospital no problem, which I’m glad for seeing as it was at the other end of the city. We met with the doctor in the clinic, so the kids weren’t able to see where Austin would actually be staying, but I think it was good for them to get a feel for where Mommy & Austin would be for the next week. They kept themselves occupied while we waited to see the doctor. We didn’t spend too much time with the doctor, as we pretty well knew most of what was involved with this therapy. We went over Austin’s case in particular, which by the sounds
of it, is pretty typical of the cases he sees coming into it. I was / am definitely worried about his blood counts, but he assured me that most children coming into this treatment had a pretty beaten up bone marrow caused by chemotherapy, so Austin’s case wasn’t much different. He told us that 40 f the children did need their stem cells back after the first treatment. You all know me by now, I of course thought - wow, that means 60 f them don’t!
The MIBG treatment itself has little immediate side effects. The MIBG (which is an isotope that binds to neuroblastoma cells) is fused with a radioactive iodine. It is given intravenously. So the idea is that the MIBG will seek out any tumors and attach itself, leaving the radiation to actually kill the tumors. The radiation is quite similar to the external radiation Austin had back in December, except this will be internal. One of the big differences is that they can use a big dose because the margin for radioactivity is so
minimal, I think he said 1mm. So it will attach itself to the tumor and that is it, the healthy tissue around the tumor will not be damaged. Not like the external radiation, where they have to be cautious with the dose in order to save the tissue and organs surrounding the tumor. The other big difference is it will be whole body, compared to treating one area. This answered my question on why this radiation would work when the local radiation he
had didn’t.
Of course, it doesn’t come without risks. The biggest, most immediate is low blood counts. He expects that Austin’s counts will begin to drop in the next couple of weeks. He will need frequent red blood & platelet transfusions. The white count will also bottom out and in some children, doesn’t recover. He would then need rescuing with the stem cells reserved from transplant over three years ago. His stem cells are being stored in
Toronto, and he would go there if he needed them back. Hopefully, with lots of prayers, he won’t need them and would be able to repeat this therapy a second time.
Because Austin is already neutrapenic starting off this treatment (low white count), he will probably need the help of daily neupogen shots much sooner than what would be a normal time frame.
Since this is a Phase II study, Glen & I were asked to sign consent forms. For the first time ever, Austin was also asked if he understands the treatment about to be given to him and if he was okay with receiving it. So at seven years old, Austin was asked to sign what probably will be the most important document in his life! Austin seemed quite comfortable in his “new” surroundings and is looking forward to his weekend of fun before he gets his “new” medicine.
Saturday & Sunday, June 7 & 8, 2003
The weather didn’t really cooperate this weekend, but we managed to have a good family get away. Last night the kids had a good time in the pool and “working out” in the weight room. It rained all day Saturday so we basically stayed close to the hotel so the kids could swim and have kid fun in the room, you know, jumping on the beds and things like that. We took a short walk to the Pier and the boys decided they wanted to tour a submarine
the next morning. Aaron thought it was pretty cool, Austin thought it was boring. Glen loves things like that, so he enjoyed it. While the boys did that, us girls went for a short walk. It didn’t start out to be short, but Erika, aka, “Pokey” wasn’t keeping up and made for a LONG walk getting no where fast. We met up later and took a Ferry over to New Jersey and went to an aquarium. It was pretty cool, the kids all touched a shark - I was
so upset to miss it on video, I taped them with the lens cap on - what a loser! From there we took the Ferry back to Philadelphia for the evening and hung around some more. It was a good start to the week and it was nice to be away from the stress of home! The swelling in Austin’s eye has gone down and is looking much better than a few days ago. He had a really good time this weekend, I’m so thankful for that!! It was nice to see :-)
Monday, June 9, 2003
Glen and the kids dropped Austin & I off at the hospital and started their way home. We checked in at the clinic, and had Austin’s counts checked. While we were waiting for his room to be ready, the nurse that we had met on Friday came and gave us a package that she had just received that morning. It was addressed to Austin and he was quite excited to see what had been sent. It was a box full of “MIBG fun stuff” for Austin to do while he
was in isolation, from another neuroblastoma family that we had never met. What a wonderful way to start our week off. While we were waiting for Austin’s room, the nurse informed us that Austin would be needing a red blood transfusion since his hemoglobin was just short of the cutoff needed for this therapy. We checked into his room in the early afternoon and got settled pretty quick. The room itself was different than any room we’ve
ever stayed - it was totally covered in plastic. The floor, the doors, the phone, the sink, you name it, it was covered in plastic. This makes it easier for them to clear the room of any radiation once the patient leaves. It took a bit of getting used to, but it was no big deal. Austin’s bed had three lead shields surrounding it to limit the amount of radiation leaving his area. These too were covered in plastic, so we were able to decorate them up with Pokemon pictures so he felt more at home in his bed! Trish arrived in the early evening and came armed with a bag full of goodies for Austin. Austin was quite happy to see her and had been looking forward to her coming all day! We spent the night orienting ourselves and getting ready for the morning ...
Tuesday, June 10, 2003
The day started out pretty early as Austin was booked to have a Foley Catheter placed for 7:30am. We headed over to Day Surgery at 6:40am. The reason for the catheter is so the radiation isn’t sitting in the bladder for any amount of time. Austin wasn’t as nervous as I thought he would be, and actually was very okay with it. He understood why he needed it and as you all know, quite likes his “sleepy medicine”. For the first time I can remember, I wasn’t with him when he was put to sleep. They wheeled him off on his own and brought him back when he woke up. It was a bit strange for me, but he said it wasn’t so bad. It didn’t take him long to have a quick boo at his new tube, and surprisingly he thought it was pretty cool. Go figure, I thought he’d be having a fit about it. It didn’t bother him in
the slightest, thank goodness, because I’ve heard other than the boredom, the catheter was the biggest deal of the treatment.
He received the MIBG injection around 2pm, which took about 90 minutes. Once the injection was done, the rules in the room changed and we weren’t allowed to be close to him. They measure the radiation levels coming off him and until it goes down to the magic #7 (he started at 32), he had to stay isolated on his bed and we had to follow certain procedures. We had to keep our distance for the first 24 hours as this is the most radioactive time. We also had to wear gloves any time we touched him or anything he
touched. Everything he touched would have to stay behind in the room once we left which we knew, so were very prepared for. He had a box of dollar store toys that he was able to entertain himself with for the next few days. The guys from Glen’s work pitched in and bought him a used Game Boy with some games, knowing that he would be have to leave it behind. He watched alot of TV and did alot of crafts!
The injection itself is painless. They monitored his heart and blood pressure during the infusion and other than that, it was pretty uneventful. To protect his thyroid gland from the radiation, he had to begin taking potassium iodine and perchlorate every four hours. He had a hard time getting last night’s dose in as it was a bolus, three times the dose - and it tasted horrible. Other than that first one, he has been doing a fantastic job doing his
meds!
P.S. Happy Birthday Patrick, my thoughts were with you today :-)
June 11 - 13, 2003
The night of the injection, I woke him up to do his meds and he was a bit nauseous. He vomited once and went back to sleep. Other than that and a sore jaw the next day (the isotope likes the salivary glands too!), he spent the next few days on his bed waiting for the go ahead to go home. The days went by really quick, looking back now I’d say they went by even quicker. Trish and Austin kept busy doing some window art and seeing who
could beat who at Trouble. The two of them had a good time together and I was so happy that Tricia was able to get to know Austin a bit better. We all kept pretty busy. To be honest, I don’t even know what we did to pass the time, but we did and as Austin said himself “it wasn’t so bad in there”. By Thursday, his radiation level went down to 10 so he was able to have the catheter removed. Friday morning it was down to 4, so he was discharged after an MIBG scan was done to be sure the isotope was taken where it was supposed to. His eye, hip and knee lit up big time, exactly what they wanted to see. Now we just wait ...
Monday, June 16, 2003
Since we were a little late getting out of the hospital on Friday, we went back to the Ronald McDonald House for the night and left Saturday morning. Austin liked staying there. I was glad to get a bit of a break before we headed home as it made it a little less stressful. I’m sure Tricia was quite ready to get back to her family, as they so graciously let me borrow her for the week.
It was good to be home! I realized once I got there how much I missed the kids and Glen. Erika looked a whole foot bigger, she was so happy to see Austin. The two of them couldn’t get enough of each other all night. I had to keep reminding Austin to keep his distance from her as he still has a bit of radiation spewing. He was pretty good about it, but at times couldn’t help himself as he hugged and cuddled with her. It was good to be all together again. We sat up late talking about Philadelphia and watching the videos that we took of our weekend.
Yesterday was a regroup day. We spent a very quiet day at home doing some yardwork and enjoying the great weather. The boys rigged up a fountain for the pond and Austin practiced riding the dirt bike with Aaron. He actually drove it without help from Aaron (the passenger), so I think by next week, he’ll be driving on his own! Oh my ....
Back to the grind this morning with a clinic visit to check counts. I’ll start by saying that Austin looks good. Since last weekend (before the injection), his eye has looked better everyday. Since his transfusion, he has such nice color in his cheeks. He was excited to see everyone in clinic today, and was especially excited to catch up on his “Bravery Bead” necklace. The hospital started a program in January where the kids get a bead for each different thing, like pokes, chemo, scans, etc. I didn’t realize how much Austin thought of his necklaces until this morning. He was wearing them pretty proud! Anyway, here are today’s counts:
Hemoglobin: 116 (transfuse under 70)
Platelets: 94 (transfuse under 10)
White count: 1.0
Granulocytes: 0.0
The grans are what help keep infection away. Right now Austin has 0. Zip. Notta. Didn’t expect that today. We have started his neupogen shots to help boost his immune system. Hopefully he gets a good jump-start. We will check again on Thursday ...
I know there’s so much more I could be telling you. I just remembered that I forgot to mention the results of his scans before we left. The MRI shows progression around the eye, which wasn’t surprising. There are new areas in the sinuses as well. The MIBG / Bone Scan as I mentioned showed new spots on the tips of the right femur (hip and knee). The most surprising was the bone marrow biopsy, which came back negative!! What a HUGE relief this was to hear ... a little unbelievable at first since the doctors who way the
aspirate thought it was packed. The pathology report for the aspirates came back one side clear, one side suspicious for nb. The biopsies came back both sides negative for nb. At last, some half decent news!!
So, Austin is doing wonderful for now. I’m sure the next few weeks are going to be busy and a bit scary with his counts. He spent this evening with his teacher and looked like he was totally enjoying that. I think he missed her :-) She will be coming again Wednesday, so tomorrow we have absolutely NOTHING to do!!!!
Again, thank you all for your well wishes, thoughts and prayers. We couldn’t get through this without you,
Take care,
Love Beth
Monday, June 2, 2003 10:44 PM CDT
Once again, there are so many bits and pieces to share that I’ll probably skip a few in between, but here it goes:
Since our last update:
Erika’s birthday was a wonderful day! She was so happy to wake up and find balloons in her bed. She told everyone “When I woke up I said, hey - what is this?? Balloons in my bed? Yahoo!” She was being her silly cute wonderful self all day and I loved seeing how excited she was. Austin & I took her shopping to find her a present, and pulled off buying everything she had “really really” wanted without her knowing we did! Austin was a master at hiding things behind his back until she wasn’t paying attention, and tucking it in the buggy where she couldn’t see. She was pretty surprised to open up all the things she had said she wanted in the store! After shopping, we had lunch at McDonald’s (of course), and did some last minute running around. The rest of the afternoon she waited patiently for her “party”. She had a ball all night and was totally enjoying being the center of attention! We had asked her what she wanted for her birthday the night before and she said, “balloons, pokemon & Austin”. Austin gave her a big hug and said, “You don’t have to wait for your birthday, you can have me now”. It was very cute! Austin was looking forward to Erika’s birthday even more than she was I think - he has been stashing things to give her for the last month. He made her a shelf for her room from a Home Depot kit that he got from the hospital. He painted it and had it hidden in his room forever! He wanted to put a little knick knack on it, so he was happy to get a little porcelain elephant to put with it. He packed her bag full of pokemon figures, (that he later reclaimed) (which by the way thank you B, J & C!!) and a Charizard balloon that he wanted so bad last week on the way home from the clinic. He had a few pictures for her along with the sweetest birthday card that he made. Can’t forget that he gave her four of the quarters he has been collecting too! She really loved all the presents he had given her, which made it even more special for him. Amber made her a little cardboard heart box that she painted and decorated with her name on top done in glitter glue. She did a great job, and Erika loved it! She put the four quarters that Austin gave her in it and it is sitting on her dresser beside all of her other special things. Aaron felt a bit left out since he says he didn’t have time to make her anything, so he wrapped up a couple of things from the playroom thinking he could pass them off. Can’t fool her though, when we asked where she got her present from - thinking she was going to say Aaron - she said “downstairs!” She loved all the presents and the company that night! Have fun being three Erika, we love you!!
Thursday, things got back down to the serious stuff and Austin had his bone marrow biopsy done. He always guesses how high he can count once the sleepy medicine starts going in. This time around he guessed he could count to 20. When it came time, he asked me to count, so I did. I got to 21 before the nurses gave me the signal to get out of the way because he was asleep. The biospy was done without any problems, and he woke up in good spirits. He was a bit dizzy at first, but after resting a few minutes he was fine. He moved out to the hallway to polish off the lunch that he had packed. When I asked him how high he heard Mommy counting to, he looked at me funny and said zero. Told me that I was counting in my head, he didn’t even hear me get to one! He doesn’t believe me that I was counting out loud, and figures they must have put that medicine in that makes him forget :-) He had no problems with the sites that night and came home like it was any other day. What a guy!!
Friday morning he had his ultrasound and that was it for the day. We were able to run our errands and be home at a half decent hour. The weekend went by way too quickly and I can’t believe we are already at Monday.
This morning we were at the hospital bright and early for his bone scan injection, followed by the scan. I’m not even going to guess at the results this time, I’m thinking the news isn’t good. We will have to wait to see. After the scan, we had his counts checked to find out his neutraphils are still stuck at 0.2. The good news is his platelets hit 100. The bad news is that the doctors think the disease in his bone marrow is progressing. We will have the biopsy results back by Wednesday and hopefully will have some answers. She did forewarn me that the aspirate didn’t look good. This is pretty scary, seeing as the only time the aspirate has been positive for nb has been at diagnosis and initial relapse. Both times, his bone marrow was packed. I’m praying that they just hit a pocket and it’s no different than his last in terms of how much disease there is. We will know more on Wednesday.
Tomorrow we have the day off so we will try to get everything together for Philadelphia. As you know, his injection is booked for the 10th. I will try to update before then, if not hopefully we will be able to find a computer once we’re there. Trish will be coming to meet us and help out once we’re there.
I still haven’t filled you in on what will be happening in Philadelphia. The treatment Austin will be receiving is high-dose I-131 MIBG therapy. The simple explanation: This is a radioactive isotope that is generally used in scanning for neuroblastoma. You all have read about Austin’s MIBG scans as a part of his normal evaluation routine. The isotope attaches itself to a gene that is found in neuroblastoma, when scanned, is perfect for diagnosing, or evaluating disease status. Children’s Hosp. in Philadelphia, along with USCF and Michigan have designed a trial using this isotope in very high doses to actually attack neuroblastoma cells and kill them. This will be the injection he will get on the 10th. It is presently a Phase II study. I recently read that so far, they have seen a 10-50% response rate in children, which is very promising! I won’t get into much more detail right now about the rest, I’m exhausted ... I will fill in the blanks as they come, I promise. This is big guys, Austin needs your prayers now more than ever! Thank you all for being here with us along the way ... it’s been a long hard road that’s about to get very steep.
Love to everybody,
Beth
Tuesday, May 27, 2003 1:17 AM
Well I finally found a minute to myself to update you all on what’s been happening around here.
Not much medically to report other than Austin continues to feel good, and as always, nothing seems to get him down! His eye looks terrible, but his spirits are high! He is an amazing child, like I had to even tell you all that? We have had some pretty deep conversations lately, I’m not even sure why - I guess he senses something big going on, but not really sure why or what. Other times it seems to me that he feels nothing unusual going on or is about to happen. Life for him is good, the sun rises and it sets and anything in between is as normal for him as it is for any other seven year old. If we could only love life half the way these kids do, what a wonderful world we would live in!
Friday’s clinic visit was pretty uneventful. His counts have come up ever so slightly and we were able to get away without needing a checkup. We did get word that he needs a complete evaluation done before we go to Philadelphia. I am pretty sure this is just routine and doesn’t have anything to do with his eligibility into this study, which I believe has already been established. He will begin his week long testing on Thursday with a bone marrow aspirate/biopsy. He will be finished next Thursday, the day we leave for Philadelphia. It will be busy, and I am already zonked just thinking about. Luckily (????), the scans are all booked for 8am, so most of our days will be freed up pretty early (????) (Let’s hope).
The weekend went by so quick I don’t even know where it went. I’m blank trying to think of what we did, other than a visit from Donna and the kids on Saturday night. We did some running around yesterday, and ended our afternoon having dinner out, which was really nice. Aaron made the school soccer team, and they had their tournament today. They played four games and all played great, but just didn’t have what it took. They tied for last place, but oh well - they had fun!! It was an all day thing, and although I felt as if there were a hundred things I could be doing, I was more than happy to be a part of their day. I was touched that Aaron really enjoyed having his “mom” around for the day, and asked me if I could please come next year if he made the team again. What a sweetheart he is! I had a lot of fun with him and his friends on the way there and back, they’re at such a great age!
When I got home, Austin was busy with his teacher. He is doing incredibly well with his work and the best part about it is that he is really enjoying it. Tamara is working him hard and he is loving every minute of it. I spoke to the principal & the secretary last week who mentioned they will be putting Austin into the Grade 2/3 split next year, and hopefully he can catch up enough to move to Grade 4’s the next year with his original class. I had to smile at them and said “Just listen to you guys, you’ve already got him going into Grade 4 :-)” They smiled back and we all daydreamt about the day Austin will be graduating ...
Well, as you can see by the time of my post, I need to get myself to bed. Tomorrow is a nothing day, so I’m hoping to get some stuff done around here. Wednesday, our little pumpkin will be turning THREE years old!!!! Can you all believe it? What a big girl she is getting to be, honestly I would need a separate journal to keep you up on all of the cute and wonderful things Erika has been up to. She is just a doll and we love her to pieces, I
just want to eat her up ...
OK, I really need to get to bed!
Take care everybody,
Love Beth
Tuesday, May 20, 2003 5:44 PM CDT
We're back from clinic, Austin's counts have all dropped again.
Fri. WBC 10.0, Grans 3.9
Hb. 105
Plt. 75
Tues. WBC 7.1, Grans 2.6
Hb 92
Plt. 63
His counts are
It has been 18 days since he has had any treatment. We're not even sure that the oral VP16 was working, I'm thinking it was doing something. He has 21 more days until Philadelphia. I was OK with this yesterday, but today I'm not so sure. Austin's eye has decided to give us a scare again, it is swollen and has hemorraged again. From corner to the colored part, it is bloody tissue. Looks awful :-(
His oncologist feels giving chemo at this point would only jeopardize his eligibility into the MIBG therapy. I agree, but am a bit nervous (OK alot) about having to wait three weeks.
OK Austin, YOU CAN DO IT - stay strong peanut - 21 more sleeps!
Monday, May 19, 2003
Hello all!
I just realized that I should have updated much sooner. Last I left you all, Austin was not feeling well. Shortly after my post he was feeling much much better. It must have been a viral thing, he seems to be just fine and back to his usual self!
Although we haven't done much, the weekend seemed busy and went by way too fast. Today was absolutely beautiful. We spent much of the day out in the yard, which is looking so pretty now that all of the trees have their leaves back! Our big apple tree is in full bloom and my lilacs just peeked out this morning. They should be in bloom by next week. The tulips and daffodils are so colorful, now I know why I can't wait for spring every winter. Catharine and Marky were here for the day, Marky & Austin spent most of the day in the sandbox, making quite the battle ground for their army men that they hauled out of the basement. They rode bikes and of course played Nintendo.
Yesterday was nice as well. We met with a family from Pembroke who had been down to Hamilton for the weekend. Their son Ayden was diagnosed with neuroblastoma when he was four weeks old. He is now eighteen months old, and what a cutie he is!! His cancer is in remission as he had surgery to remove his tumor, without the need for chemotherapy. I met his mom through this webpage and was thrilled to hear that they would be coming to Hamilton. She has also connected with Trish, so Trish & I and the kids all met them at Gage Park. It was a good afternoon and was nice to sit and relax while the kids were busy playing. You can check out Ayden's web page at www.caringbridge.org/canada/ayden.
We have clinic tomorrow, hopefully those counts have come up a bit. I found out today that Austin made a calendar checking off the days to go before Philadelphia. I had no idea he was even thinking about it. He made one for Philly and one for Erika's birthday (9 more days). The corner of his eye is getting bigger, I asked him to hang tough - it's only three more weeks. He said that should be no problem :-)
Will let you know how clinic went,
Take care,
Beth
Friday, May 16, 2003 7:36 PM CDT
Thought I’d give a quick update before we all get caught up in the long weekend.
I think I left off not knowing whether or not the doctor would want Austin to start the chemo again. As I suspected, his counts weren’t high enough on Tuesday, in fact, he was neutrapenic again. We put him back on the neupogen hoping to raise his counts enough to avoid the risk of infection. After three days, his white count has jumped up quite a bit,
so we will continue to do the shots and from what I understood on Tuesday, will not be giving any more chemo before we go to Philadelphia. His bone marrow is so tired and is taking so long to recover from each course of treatment. It will probably do him good to have a rest from treatment until we can do the MIBG therapy. I know I still owe you guys an explanation of what is to happen in Philadelphia, I will do that soon, I promise!
In the meantime, I was quite disappointed to learn that our doctor had heard back from Wisconsin. Do you remember that Austin was put on the waiting list for the antibodies which we were told would probably be available at the beginning of April? When we learned that he was eligible for Philadelphia, we never did let Wisconsin know. It was a long shot, but we were hoping that enough time passed that his number wouldn’t be called up until after he was finished in Philadelphia. We, as well as his doctor, feel these antibodies would be the perfect follow-up after the MIBG therapy. To make an even longer story shorter, Wisconsin called up Austin and would have potentially been ready for him this weekend. We had to pass on their offer for a couple of reasons, one because we feel Philadelphia’s treatment offers more hope, and second because he wouldn’t have been eligible anyway. He has had chemo in the last three weeks, which would disqualify him, as would his sucky counts. So what this means for Austin is that he has lost his spot in the study for antibodies. When he is finished in Philadelphia and his counts have recovered from the MIBG therapy, we can reapply for the study in Wisconsin. Hopefully, he will still meet their criteria and we will be able to go when the time is right for Austin! I continue to pray to God for guidance when having to make these difficult decisions. Not that this was a difficult decision to make, the timing just stunk!!
Now as for our great one ... he’s not feeling so great the last couple of days. Wednesday night he complained of a severe pain in his side and couldn’t get to sleep. He tossed and turned and was in and out of bed all night. He vomited twice, but that didn’t seem to relieve his stomach ache. He finally fell asleep at 4:30 in the morning and was up again by
7. His belly didn’t feel much better and he slept on and off all day. He slept through the night last night, but still woke up this morning feeling pretty crummy. He has been eating a bit, drinking well, and hasn’t had a fever. We had clinic this morning and he was so not himself, he wasn’t able to walk around the hospital. It has been a LONG time since I’ve
had to sit him in a wheelchair. The resident who checked him couldn’t tell us much (big surprise), wrote him a prescription for a laxative (ya, OK, that’s it - he just needs to poop - what is it with these guys???). I’m sure he just has a viral thing, praying hard that it’s nothing nb related, and waiting patiently for my little big guy to be his noisy self again! He
just had a bit of soup for supper and mounds of watermelon and has actually made his way to his room to play Nintendo - so maybe he is snapping out of it as I type!! Will keep you posted if anything out of the ordinary should happen this weekend, but I’m sure he’ll be just fine!!
The other kids are all well, Aaron has just left to spend the night with Chris. Erika is busy in the kitchen fixing herself a snack (do you believe how big she’s getting?) and Amber is downstairs watching TV. Did I forget to tell you that Amber won a Citizenship Award for April. She was presented her certificate at their school assembly. We are very proud
of her!! In the school bulletin it says: Citizenship Awards = Students who display positive attributes in academic, spiritual and social skills are recognized for these qualities. WAY TO GO AMBER!!!
Hoping you all enjoy your long weekend, no fireworks for us this weekend - not that I know of anyway!! This weather has been so LOUSY!!
Take care & have a safe May 2-4!
Love Beth
Sunday, May 11, 2003 9:41 AM CDT
Thank you for all of your sweet messages! I wish you all a very Happy Mothers Day. Mine started out rather sad, but all is fixed up - and we're on with our day!
I woke up to Erika wishing me a Happy Mothers Day and Amber carrying a tray with (cold) toast, a banana and a glass of juice. She had her presents that she made for school on the tray and a picture that she had helped Erika make for me. Aaron is sleeping over at Christophers so I was missing him as he usually "helps" out with Mother's Day Breakfast in Bed. Amber has been a little bit of a stinker bum lately so I wasn't surprised when I asked her where Austin was and she replied she didn't know. I asked her if maybe she couldn't have waited for him to bring the "tray" with her. She didn't seem too fizzed by it and left the room. Minutes later, Austin came slowly down the hallway, arms crossed with a look I haven't seen in a long time, if ever. His bottom lip was quivering and he looked so sad. I have tears in my eyes thinking about it. I quickly pulled him over for a big hug and told him that was the BEST present I could ever get, was a big hug from him. With real tears, and lip quivering, he said that Amber wouldn't let him help get my breakfast. I realized that he didn't have the chance to make me anything for Mothers Day since he hasn't been to school. He broke my heart. So I told him that I had an idea. I asked him what Mommy liked more than anything when she wakes up. He answered, coffee?? I shook my head yes and asked if he would like to make Mommy a coffee. His eyes widened, as if to say - are you for real?? I told him what to do, and he raced off to the kitchen. He kept running back and forth to our room for a play by play on what he was doing. When he was finally done, he came in and I will never forget the smile that he had on his face. I love his smile, I love everything about him. I told him that he was the first kid EVER to make Mommy a coffee and how special that was! So - we're good now!!
Everything else is good, no pills this weekend, we will wait to see what his counts look like on Tuesday. The doctor in clinic ( a different one than last week) still wants to give him the pills, we will be talking about it more on Tuesday (with yet another doctor). Will fill you all in then.
Have a great day!
Love Beth
Thursday, May 8, 2003 10:13 AM CDT
Sorry it has taken so long for an update. Austin is doing surprisingly well, he looks good and has been feeling great. Who would ever believe that only weeks ago we were told his disease is progressing? It sure doesn’t feel real, not to look at him. He is as happy as ever, playing as rough and tough as usual, and looks just like our wonderful little big guy always has!
His counts have been bouncing back and forth on the oral VP16. We have established that he is indeed neupogen dependent, so we will follow each course with neupogen injections to give his white count a boost. At last check on Tuesday, his neutraphils were 0.2, this after a three day course of the VP16. Hopefully the neupogen has kicked in already and his counts are much better. We will find out tomorrow. The good news is that it hasn’t hit his platelets or red cells hard, although they have come down quite a bit from beginning this chemo. On Tuesday’s check, his platelets were 86, hemoglobin 103.
Platelets of 86 aren’t that great compared to a healthy person’s, but are pretty respectable for a kid in Austin’s condition. Watching Austin around the yard, I am convinced he thinks his platelets are 860! He is just an accident waiting to happen. Austin’s newest and coolest thing is that HE CAN FINALLY RIDE HIS BIKE!!! Yes, all by himself ... we are so proud of him!! The first couple of days were pretty wobbly, take note that Austin has NEVER rode a bike - not even on training wheels. So when he got on that bike and went - HE WAS GONE!! Funny (& scary) part was for the first couple of days, he didn’t quite know how to stop (LOL) - so he would just bail! The funniest of all was when he and Aaron went for a ride on the road and Aaron got a little too close for his comfort, so he swung himself to the side and landed right in a ditch full of water!! ONLY AUSTIN!! He has managed to get through his first week of riding a bike with only a scraped elbow, not bad considering the amount of falls he has taken. Thank goodness he is already so much steadier, in fact yesterday he was jumping off a little ramp that he and Aaron made ... oh brother (s)!!!!
Clinic visits have been a little different for Austin lately. There seems to be soooo many boys lately. He has been making so many new friends, and what a feeling to see him interacting with other children the way he has been. We have been going to that clinic for 4 1/2 years, and never (NEVER) have I seen Austin socialize like he has been in the last few weeks. He has been showing some of the younger boys how to play the Pokemon board game, and has been playing Yu-gi-oh battles with the older ones. It’s a nice change to have him busy playing while we’re there!
More good news, we finally have a tutor coming to the house again!! “Tamara” started on Monday and she and Austin seemed to have hit it off right away. They got to know each other a bit the first day, and yesterday they got into some “real” work. I was amazed at how Austin has progressed with his reading! If all goes well, Tamara has said she’d be interested in tutoring through the summer as well. The school board has already approved hours in the summer months to get Austin caught up. This would be GOOD!!
That’s about it for now. The doctors are all pleased with the way things are going for Austin. Their main goal was to keep everything stable until we get to Philadelphia. By the looks of things, we have accomplished that. I will find out tomorrow if we will be doing more chemo pills or not. I think they might want to stop and give Austin a good break for his counts to recover on their own (without neupogen) before June.
I’ll try not to be so long with the next update :-)
Take care everyone,
Love Beth
Monday, May 5, 2003 4:57 PM CDT
Hi everyone,
Just a quick hello to let everyone know that Austin is doing well and no news is always .... good news! Nothing going on around here except the normal excitement that comes along with having kids!
I will update tomorrow after clinic to fill you in on all the latest Austin adventures!!
Take care,
Love Beth
Friday, April 25, 2003 1:21 PM CDT
Austin's clinic visit was short and sweet today. His counts have dropped after four days of the VP16. His platelets and hemoglobin are still hanging in there, but his white count has dropped big time. His neutraphils were 0.1 this morning, so once again he is neutrapenic and we will have to watch for fevers this weekend. His doctor decided to hold off on the neupogen to see if he can bounce back up by himself. Maybe next week we might try giving the pills every other day depending on what his counts are like on Tuesday.
Austin was looking forward to going to Toys R Us after clinic, but since his counts were so low I told him we would have to wait. He has been itching to spend his Easter money and was pretty disappointed he couldn't go. He won't tell me what he wants, he just says I'll have to wait and see!
I posted some new pictures, as you might have noticed my scanner hasn't been working right for such a long time. I'll post them like this for now, but I'm hoping I can rescan them next week and post them without those darn blue stripes!
Looks like a great weekend is shaping up weather wise! Enjoy!!
Love Beth
Thursday, April 24, 2003 8:38 AM CDT
Nothing too exciting to pass along to you this week. It's been your pretty basic busy around here which suits us just fine!
The kids had a very nice Easter weekend! I was so happy that Trish and the kids were able to make it out on Friday for a visit. Since this SARS thing, Trish hasn't been able to pop in on us at the hospital, so we haven't seen each other in what feels like forever. The kids had lots of fun, the boys were busy outside finding snakes and whatever. They actually picked up a snake and made a home for it, ewwwww. Aaron & Derek were serious enough about keeping it that they wanted to learn how to feed the thing - I think they would have picked anything up that day. They found three salamanders and put them in a bucket. First time we've ever seen them around here! At least that's what we think they were, some lizardy looking things anyway. The girls were a little less grimy and had fun riding the dirt bike. We watched Danielle's dance competition and were very impressed!! Way to go Danielle, maybe one day Erika would like to dance like that!
The kids had a nice Easter day. They were up bright and early to hunt for their stuff. The Easter Bunny left them all a big treat on the coffee table in the living room. It even made a point of writing their names on the boxes so that there was no confusion about who's was who's. There was a hockey bunny for Aaron, a bunny with a pretty pink bow for Amber, a deck of Yu-gi-oh cards for Austin, and a little tiny bunny for Erika. Thinking this would be a good setup, the Easter Bunny was pretty proud of itself! Well, until Austin couldn't find his chocolate bunny, that was. Oh Austin, he was looking all over for a big chocolate bunny, saying "The Easter Bunny didn't bring me anything". I had to backtrack with him and asked what exactly was on the coffee table when he woke up, and together we figured out that he got cards instead of chocolate. He remembers last year that he got a sugar free chocolate bunny and thought he might have been getting one this year. I had to remind him that even though it was a sugar free bunny, his blood glucose was over 35 last year on Easter morning, and it probably had something to do with that chocolate. Anyway, he didn't miss a beat and started looking for all the little chocolates that the Easter bunny hid that he later split up between the other three kids. He was happy to find some pokemon cards hidden around the house! Erika had lots of fun finding stuff, and Aaron and Amber wandered around, almost looking too old :-( for this Easter bunny stuff - how did that happen so fast???? Aaron found some sugar-free gum hidden and got so excited that he found gum! When I pointed out the fact that it was SUGAR-FREE and asked WHO he thought that was for, he gave it to Austin and felt ripped off. They found another pack and the two of them, Aaron and Amber were all upset because Austin got gum for Easter and they didn't. As they were mowing down their chocolate all day - they kept saying how unfair it was. Go figure!
The rest of the day was nice, we had Nana & Gramps and Uncle Dave & Brian over for dinner. We were glad that Chris and Mike could come too! Erika of course loves all of the attention and didn't miss the chance to be the center of attention for most of the night. Monday was a bit quieter with a visit from Lynn and the kids and a quick visit from Ola. We spent most of the day working on Aaron's project about John A. Macdonald - whoohoo!
On the medical front, Austin continues to feel great. He looks wonderful and believe it or not his eye keeps looking better and better every day. It's unbelievable to me that the tumors are progressing, you would certainly not know by looking at him. We had clinic on Thursday and were surprised to find out that Austin was neutrapenic. (White count too low). The doctor decided to take him off the pills and start neupogen to give him a boost. This was after only three pills. He's decided to have him take three or four pills a week, depending on his counts and then give him a rest for a few days in between. As it works out, based on Austin's weight, he should be taking 30mg a day. The pills only start at 50mg, so if he were to take the 30mg a day, he would have had to take syrup - and we've heard it's pretty yucky! So, four pills a week will equal out to the seven days anyway and he'll get a break to boot. Seems to have worked, his counts on Tuesday were all in good ranges. Actually, besides his hemoglobin (104) all of his counts were in normal ranges. WOW!! His doctor was very pleased!!
In the clinic, Austin has been meeting up with a little friend Andrew, who seems to be following Austin's footsteps with the Pokemon craze. His mom had told me that Austin was the first kid that played Pokemon with him and ever since he's been hooked! Andrew is six and just doesn't have the experience a seven year old does, so Austin seems to be the master in the duo. Andrew thinks Austin cheats because he always has better cards. Austin was so sweet last week and gave Andrew his first "good" card! They were both excited yesterday to find out that they both brought Yu-gi-oh cards. Austin got his deck on Sunday, and Andrew just got a big bag of them from the clinic - so now they're battling Yu-gi-oh, and I don't think either one has a clue what they're doing - of course Austin wouldn't ever let you know that!
We're back to clinic tomorrow to check on his counts. Will let you know how it goes!
Take care,
Love Beth
Wednesday, April 16, 2003 10:49 AM CDT
Hello,
OK, I’ll try this again :-)
Since the last update was a bit on the technical side, I’ll tone it down a notch and let you all know some of what Austin has been up to.
Going back a couple of weekends ago, Austin had a great time bowling with Aaron & Amber and Trish’s kids thanks to Camp Trillium. Each month Camp Trillium does something fun with the kids, so we’re going to try to join in when we can!
Even though the week of scans were busy for us, Austin still fit time in for visitors and lots of fun. He had lots of fun with his longtime friend Dustin, who he hadn’t seen for a long time. Dustin and his family were here for dinner a couple of weeks back, the weekend of the ice storm. Dustin & Austin almost gave everyone a heart attack when we found them sliding on the pond, which was frozen, but was totally thawed the day before. They were SO LUCKY they didn’t go through that ice! Could you all imagine??? We haven’t been fighting for Austin’s life for almost five years just to have him go and drown on us, what was he thinking???? LOL
Christian was over one night and they had fun running around. A new friend of Aaron’s (from hockey) surprised Austin with his collection of Pokemon stuff that he’s outgrown. Austin couldn’t have been happier, he now has over 1000 Pokemon cards and spends LOTS of time looking at them, sorting them, battling with them, etc. It keeps him very busy :-) He also gave him some Pokemon books, and a great collector’s tin that Austin now keeps his game boy & stuff to carry back and forth to the hospital.
The kids have been outside a bit, it is so wet out they haven’t been able to do much though. The other day Austin decided to learn how to ride his bike (something we have to work on this spring), and of course he had to pick the muddiest of all days to do it. I could only laugh at him when he came to the door and was mud from head to toe, front & back. He says he fell a couple of times on the driveway ... it was priceless!
All of the kids had a great time at Aaron’s hockey party on Saturday. Austin was a bit quiet at first, but it didn’t take him long before he joined in. He wasn’t interested in playing soccer with all of the boys and just as well, it was a bit too rough, but he had lots of fun playing mud wars most of the afternoon. Luckily he didn’t get hit with any mud bombs, but not so lucky for the other team, Austin says he has super aim and was pinging the other kids no problem. You just gotta love him!! Once night fell, they had some fireworks and a bon fire. It was a good way to end Aaron’s great hockey season! Sunday, Donna had us out to her place for dinner. The kids always love going to see her and the kids, it was good to finally get there, it’s been so long!
The kids are looking forward to Easter. It should be fun to watch Erika this year. I guess I should get out and pick some stuff up for them. Once again, I’ll have to get creative as Austin won’t be able to have chocolate & candies. Poor little guy :-(
A quick medical note, a date has been set to go to Philadelphia. We will be meeting with the doctor on June 6, a Friday. We will stay the weekend and Austin will be admitted on June 9th and receive the injection on the 10th. He will most likely be in hospital for 4-5 days. I will fill you all in later about what the treatment entails.
In the meantime, he has started his oral VP16. He has to take one pill each day. We will have to watch his counts closely as it may affect the bone marrow production of blood cells. Austin started taking them yesterday, and I am so very proud of him. The pills are big, almost as big as the pills he took last year. Thankfully, he only has to take one! Yesterday’s pill went down quick and easy, but he had a harder time this morning. After about five tries and alot of gagging, he finally did it!!! Hopefully tomorrow will be a bit smoother for him.
A cute thing to leave you with ... last night Aaron scraped his knee and was making a bit of a fuss before bed about it. We ran out of band-aids, (because he used them all in the afternoon for a scratch on his hand) so he was worried it was going to bother him in bed. Austin was helping him try to find a way to be more comfortable, so he told him to put some “Alabama” on it. I couldn’t stop laughing - he meant Aloe Vera. It was just the way he said it ... he’s tooooo cute!!
Wishing you all a VERY Happy Easter weekend!!!
All the best,
Love Beth
Tuesday, April 15, 2003 9:37 AM CDT
Hello,
I've been sitting here almost 1/2 hour and keep coming up blank. There's always so much to tell ... I'll be back in a little while ... Austin is feeling wonderful and looks great!! That's all that really matters :-)
Tuesday, April 8, 2003 5:47 PM CDT
The past week has been so full of ups and downs I haven’t been able to make sense out of it all until this morning, receiving a phone call from Austin’s onc. with a somewhat plan. Last Tuesday Austin had his bone scan. I guess after so many years of watching your child’s bones light up on a computer screen gives you the sense of what should be lit and what shouldn’t. This has it’s good points and sometimes bad points. The techs can’t say much so you sort of come to your own conclusions - and the hard part is waiting for the doctor’s reports to confirm what you know you just saw. This usually takes a couple of days anyway. It was obvious to me that the outside corner of Austin’s eye was showing uptake, which it hadn’t in December. This is a clear sign that the neuroblastoma is gaining speed. What I also saw on the scan, surprising to me, was uptake on his spine. This was the down side to seeing and having to wait for confirmation, which we did get yesterday. Indeed, the right zygomatic (???) arch and lateral wall of the orbit had increased uptake, (the “C” bone around the corner of the eye) as well as the right side of the distal thoracic spine, (D12 level). Remember that two years ago at relapse Austin had uptake in the T9 level of the spine - which sent my mind flying - was his bone marrow packed again???
Wednesday, we had the CT Scan of his chest / abdomen done and his MRI of the head. Austin was a good sport during this long-g-g-g day. The day was a little unorganized as the hospital put their SARS alert in place. It hasn’t affected Austin’s care in anyway, he has for obvious reasons, been placed under the heading of “urgent” care as have all the oncology kids on treatment. The only inconvenience we are faced with is having to use the front doors to enter and exit the hospital, be screened and “wash” our hands before entering each department.
Knowing that the bone scan lit up was an obvious “down” part of the week - but it gave us some sort of hope that he might possibly light up on the MIBG scan he had on Thursday. His previous scans had been MIBG negative, thus making him ineligible for the MIBG therapy in the US, which is a somewhat hopeful treatment showing response in many children. We waited anxiously to see if he was going to light up - something the nuclear med. techs aren’t usually hearing from parents. When the scan began, it wasn’t as obvious as the bone scan, but it was obvious enough to me that I relayed the “good” news to his oncologist as soon as we were done the scan. He of course had to confirm this with the radiologist, which he did, and indeed he lit up on the MIBG in the area of his eye. I later found out that he has slight uptake in the area of the spine as well.
As well, he had his bone marrow biopsied on Thursday. He was looking forward to his sleepy medicine and gave the doctor a hard time trying to stay awake as long as he could. He was adamant about staying awake and tricking them all. He’s so funny. The procedure went well and Austin had a good hour nap before he woke up and ordered “two” pieces of pizza and a Diet Coke!
That ended the week of testing and we were able to get ourselves home before the “ice storm” hit. Luckily we didn’t have to go in Friday as the weather was absolutely terrible, and not so lucky for me - the kids had a snow day (they were NUTSO all day).
I heard from the doctor Friday morning. He had heard back from the doctor in Wisconsin. They have reopened the trial using the next dose level, but have the kids (three) that they need for now, so Austin won’t be called for sometime (he is #12 on the list). He figured it would be at the earliest late May, so advised our doctor to go ahead and treat Austin while we wait. In the meantime, he had gathered all of the scan results and gave us the scoop ...
The area of the eye is showing uptake on the bone scan and MIBG scan. The CT Scan and U/S report that the masses previously seen on scans (and that have remained unchanged since his surgery 4 years ago) have increased in size. He feels that the uptake in the spine region showing on the bone scan and MIBG are a result of this activity. This is not clear but is his best guess. The bone marrow aspirate (the fluid part of the test) was
negative for neuroblastoma. The MRI shows that the mass in the sphenoid sinus is breaking up and has changed in appearance. The area around the orbit was slightly larger than in February and there are new signs of disease in both the maxillary sinuses as well as the anterior ethmoidal air cells (????????) So - a bit of good and bad news mixed in. Austin’s doctor feels that this latest MRI would indicate that there has been some response to the radiation. The not so good news is that the cancer continues to spread along the bone and into the orbit.
Have I sent your mind flying yet???????
OK, now back to some good news. The MIBG scan is positive, SO - our doctor was going to contact Philadelphia to see if Austin is eligible for the MIBG therapy, which involves a high dose of radioactive isotope (the same as they use for the scan). He will also need to confirm whether or not Austin has enough stem cells stored for this treatment. I will fill you all in later if this is a go. Austin’s counts were all in good ranges yesterday, so this is good news. I am still giving him neupogen injections every other day to keep his white count at a half decent level. His eye is looking MUCH MUCH better! He is feeling wonderful and looks good. His eating has picked up a bit this week and he has gained back the few pounds he lost somewhere.
The doctor called this morning to let me know he has heard back from Philadelphia and yes, Austin is eligible. He does have enough stem cells in reserve, so this is good news too! The not so good news is that there is a two - three month waiting list :-( He will be contacting him again to get a firm starting date as I told him to go ahead. In the meantime, he has decided to put Austin on an oral chemo (VP16), hoping that this keeps everything stable until we can get to Philadelphia. We will be back in clinic on Friday / Monday to get this going.
OH YA, can’t forget to tell you that the preliminary bone marrow biopsy report came back as negative. I had to laugh at that one! I joked with the doctor saying you just never know what to expect. Here I thought it would be packed. He had to laugh back and said well, that’s never the case with Austin, is it?
Sorry this update is so long and technical. I will try not to be so longwinded next time :-) I will let you know how the rest of our week is going here at home.
Take care,
Love Beth
Tuesday, April 1, 2003 7:29 AM CST
Just a quick note to say that things are a little more calm around here than I last wrote!
The swelling in Austin's eye and lip have went down, although as I said his eye is still pretty black and still hemmorhaged. We had his counts checked yesterday and they were all pretty good. Platelets have hurdled the 100 mark. I never got a chance to speak to the radiation doctor, he will be calling me. The oncologists have been speaking with him, and the jist of it is that he feels if needed, there would be room for more radiation.
We're off this morning for an MIBG injection. I will let you know how the week is going!
Take care,
Love Beth
P.S. WELCOME to the family, Charlie!!
Saturday, March 29, 2003 11:48 PM CST
A lot has seemed to happen since I last updated only two short (seems like forever) days ago.
I had told you that Austin's eye had been bothering him that morning when he woke up. He seemed to be fine throughout the day and didn't say much more about any pain. That evening, I was totally shocked to see his eye after he had been downstairs watching TV for only a short while. He came upstairs and his eye was so swollen. He said it didn't hurt, but it sure looked awful! I decided to play a game with him to see if he was having any problems with his vision, so I started holding up fingers. He blocked his good eye and he just had a blank look on his face. He couldn't see my fingers. After trying for a moment, he looked at me and told me there were two Mommy's. He said actually, there's one of you and then a half of you. You can imagine that this was quite concerning, so Glen & I decided that we better bring him into clinic the next morning.
He woke up Friday morning looking much better, I even had doubts about bringing him into clinic but without much thought knew I couldn't get through the weekend without having him checked. After explaining to the doctor what had happened, she gave Austin a thorough exam. I should know by now to expect the unexpected, but was totally thrown offguard when she told me she felt a lump in his belly. She said it could be stool, but felt uncomfortable enough about it that she immediately booked an ultrasound. Thank God the ultrasound was normal and the lump she felt was most likely gas or stool. She was very concerned about the swelling that had occured and the loss of vision, so she has ordered a complete workup for next week to see where we're at. She had consulted with the radiation doctor sometime last week regarding Austin and has made plans for us to speak with him on Monday. His bone marrow has been booked for Thursay and hopefully his MRI will be booked ASAP. She will also speak to the doctor who has / will have to be in touch with Wisconsin to see if there is any signs of the trial reopening. I was so pleased with the sense of urgency. Austin is in good hands!
Since the day initially started out promising to be a quick check of his eye and turned into a daytime marathon, I was more than happy to follow up our visit to the hospital with a trip to Toys R Us. Austin finally got his Ruby Pokemon Game Boy game that he has been waiting for and was even more thrilled to find out there was a "new" Pokemon movie that just came out - Pokemon 4 ever! How could I resist after a day like we had?? Erika came along for our "short" clinic visit as well and for her patience and perfect behavior she scored herself a Winnie the Pooh movie. They were both happy to get home and watch their new movies! I thought our day was pretty much done, but ...
Austin came upstairs for supper and told me his lip was bothering him. He had a fat lip! The right side of his upper lip was a bit swollen and he had a tiny cut on the inside, which I found out later was probably caused from the swelling. I asked him if he bumped it or bit it and he was sure he didn't. I didn't think too much about it, but as time was passing, it kept getting bigger and bigger. His eye was ballooning out again too. After a couple hours had passed, his top lip was so swollen it looked like he had been hit by a truck. I don't think he could distinguish between pain or pressure, but it was really bothering him. At one point he said his jaw hurt when he moved his head, so I think the whole side of his right face was swelling. I can only explain how I felt by telling you it was very freaky. Freaky doesn't even describe how it feels to look at your child and see that his face is all of the sudden disfigured, knowing that it's a sure sign that the cancer is running wild inside his head. Oh what a helpless feeling. I paged the doctor and told him what was going on, and unfortunatley he had no immediate fix. He suggested giving Tylenol if there was pain and thought Dexamethosone might help the swelling go down a bit. The problem with Dex is that it's a steroid and it plays funny with sugar levels. We both decided in Austin's case that we wouldn't resort to steroids unless it was absolutely necessary. Other than that, he sympathized with how we might be feeling and at one point was going to try to schedule an emergency MRI. I told him that we wouldn't be making any treatment decisions until we spoke to the doctor in Wisconsin, so he decided to hold off going that extra mile for a weekend MRI. He explained the reason for all of the swelling was most likely due to the inability to drain fluid, causing these build ups. The tumors must be constricting the blood vessels, etc. (or whatever) that are needed for drainage to occur.
Once I was off the phone, I told Austin what the doctor had said and he said he didn't need a Tylenol and if he had trouble sleeping, he might have some Benedryl to help him get to sleep. He seemed quite comfortable with the doctors explanation and I think a little relieved that he knew why this was happening. He was very ready for bed and slept like a baby through the night. He didn't even wake up for a trip to the bathroom :-)
He woke up this morning looking much better. The swelling in his lip went down considerably. The swelling in his eye went down a bit, but has hemmorhaged again! Just when it started (the white of his eye) to look better. His spirits were good and he spent the morning playing and had a hearty lunch of bacon & eggs with Daddy. He decided not to come with us to Aaron's hockey game but rather go to Nana's and play. Looks like they had lots of fun (him & Erika) while they were there.
Aaron's final game was this afternoon. THEY WON!!! It was a great game and the boys deserve the title of Niagara District House League A Division CHAMPIONS!!!! Way to go boys!!
Tonight the house was full with visitors and the kids had lots of fun. Austin seemed to be his usual self. His eye still looks rough, with the bloody tissue, and now jet black shiner, but the good news is the swelling has gone down. His lip seemed much better. Everything about him seemed to be much better tonight, what a relief.
Bye for now,
Love Beth
P.S. Thank you Tricia for being there yesterday! You are totally amazing - and a P.S.S. from Erika - thanks for the lunch and that new trick of dipping french fries in ketchup AND gravy!!
Thursday, March 27, 2003 3:23 PM CST
Hello,
We won't tell Austin, but I had to change the background back until we find a really "cool" one! There was something about the one he chose that didn't sit right with me. I know ... he picked it and all, but I'm sure he won't mind. I have been really slack on taking pictures lately, but I promised myself that I would get the camera out and take some updated photos.
I just received a phone call from a reporter from The St. Catharines Standard wanting to do an update on Austin. I was totally unprepared to give him a "real" Austin update, so all I could do was give him a piece of what's been happening. Which leads me to this journal entry that I've been wanting to post for sometime but didn't want to get ahead of ourselves.
Austin's counts are all on the rise, Monday saw good numbers. I'm still not sure if his platelets were real or not as they were 79 (the same as last Thursday's). This number could still be a bit higher because of the transfusion a week ago. Since it looks like he's on the upswing, we don't have to go back to clinic until next Monday. We are enjoying the break from clinic, although I can't seem to think of anything to do with the kids. Austin thinks he might be ready for school sometime next week. He emailed his teacher today telling her that he has a "snotenos so i wut hav toblomi nos a bat avre fry minits" Translation: He has a snotty nose so he would have to blow his nose about every three minutes!
His cold is much better, his cough is almost gone. I was hoping that I would be able to tell you his eye was looking much better, because it was a couple of days ago, but yesterday I noticed the swelling had come back a bit. This morning he woke up and told me his eye really hurt all night and still did. I gave him some Tylenol and it seemed to work. This is the first time he has ever complained about his eye. I will mention it in clinic on Monday and see if they have some suggestions for the pain. It seems to be in the bone.
I haven't updated about Wisconsin because to tell you the truth I don't know much more than I told you last month. As far as I know, our doctors haven't been in touch with the doctor from Madison. I expect to hear from him when the trial reopens, which could be "whenever". His best guess was the beginning of April. In order to be eligible for the study, the child has to be off chemo for at least three weeks. Their counts have to be fairly decent as well (this would take Austin at least 5-6 weeks after chemo to achieve). This will be what might get complicated as time goes on into April. Austin is now four weeks past chemo and could be off at least two more weeks before his counts totally recover allowing him to receive more treatment. Should the trial open in this time period, Austin would indeed be eligible and we would go from there. If we don't hear from him (or the trial isn't open) in the next couple of weeks, Austin's doctors will have to decide whether or not to treat Austin again. If this were the case and the trial opens within that next six week period, Austin wouldn't be eligible and he would lose his number in line.
I haven't searched much to find out more information on this study using hu14.18 antibodies. When and if the time comes I will be sure to fill you all in on what the treatment entails, etc. Right now I am trying hard not to assume anything. This way I'm sure not to be so disappointed if it doesn't work out the way we hope, right??
Thank you all for the wonderful guest entries you have been leaving. I read some to Austin this morning and I wish you could all see his face. He was smile from ear to ear!
Oh, by the way, Aaron's hockey has been so exciting. They are now playing for the championship, the best 3 out of 3. They lost their first game, so last night could have potentially been it for them. But they came through!! and won 3-2. Aaron played his best game yet this year, he was awesome. All of the kids were! Their final game is this Saturday - go Smithville go!!
Have a good night,
Love Beth
Wednesday, March 26, 2003 4:47 PM CST
Hi,
i hav a new backrand. i pikd it. i hope you ken see it.
Love Austin
P.S. Mommy will update soon!
Friday, March 21, 2003 5:15 PM CST
I apologize for leaving this journal entry so long, I've been meaning to post an update but have been waiting for some positive news to share with you. The days are passing, and I'm finding it hard to find the good in all of this. But as usual, I know that there are always bright sides to everything and am trying hard to focus on those.
To summarize our week, Austin needed platelets again on Monday. His numbers dropped to 15 which normally wouldn't require an immediate transfusion, but his eye has hemorrhaged again so we decided to take the cautious route. His counts didn't look like they were on the upswing, so I'm glad they made their decision to top him up!
His right eye is certainly concerning to look at. Along with the black under the eye (which has been there since December), the whole corner of his eye (the white part), is filled with a pool of bloody tissue. Added to that the swelling seems to be getting worse. His eye looks absolutely horrible. On the bright side ... it isn't bothering him at all and he tells us that his vision is completely normal in that eye.
His hemoglobin has been lower than it has been in such a long time. Looking back in my records, I see that he hasn't had a long spurt like this since the spring of 2001. He has been hanging in the 80's for almost three weeks now and I think it's taking a toll on him. Although this is below normal, it isn't low enough to transfuse which I'm sure would probably give him the boost he needs. He has been complaining of back pain and tired legs. He walks around hunched most of the day because he can't find the energy to stand straight. The bright side ... he still has enough energy to torment his brother and sister and seems to find spurts of energy where he has enjoyed playing outside climbing trees, and splashing in mud puddles. And of course, he always finds the energy to play his Pokemon games! He has been waiting for school to end so that he can call his friend Marky. He has been wanting to get together and play and has asked if maybe he can sleep over. Hopefully they’ll get a chance this weekend.
He has also been suffering from a terrible cough and stuffed nose. He and Erika both have it and both have been super moody. On the bright side ... I don’t have to worry about separating the two since they both have the same cold. As bad as his cough sounds, the doctor says his chest sounds clear .. now this is good news!
Yesterday’s clinic visit saw better counts, his platelets were 74, certainly as a result of Monday’s transfusion. His white count is finally half decent thanks to the daily neupogen injections. (WBC 4.2, grans. 2.2).
Hopefully my next journal entry will be a little more upbeat :-) It seems like such a long time since Austin has been completely well. The bright side ... Austin is oblivious to all of the above. In his eyes, he’s just a normal seven year old, doing normal seven year old things! Just as it should be :-)
Enjoy your weekend,
Love Beth
NOTE: Austin's cough seems to be alot less frequent. Marky is here for a sleepover, so the two are busily engaged in catching up right now. It's so good to see them together, they really get along so well. Marky didn't seem to care that Austin is bald again, and so far hasn't asked him what's with the eye. They haven't seen each other in so long.
Austin looks so grey next to Marky and his rosy cheeks. I hope his counts come up soon!
Saturday, March 15, 2003 1:04 PM CST
Well, I'm happy to report that things are looking better around the Davis house. Austin's white count has come up ever so slightly, but enough that he has been able to enjoy the outside world! Erika's fever broke Thursday morning but not without vomitting a couple of times through the night. She woke up feeling much better and by afternoon she was back to her little self!
Thursday's counts weren't all that great, but enough that he didn't need another platelet transfusion. Platelets were 34, hemoglobin 94 (thank's to Monday's transfusion) and neutraphils 0.9. We had his thumb checked while we there. Austin doesn't know how he got a boo-boo on his thumb, but somehow he managed. It has been bothering him and it started to blister and get red. The doctor took a look and said it was infected so has prescribed antibiotics for it. It is already starting to look better. Funny thing is he has been neutrapenic (with an infection) and no fever ... only Austin!!
The headaches are still coming regularly. Tylenol, cold facecloths and now Lavender Oil seem to make him feel better. Daddy brought home a tincture of lavender and Austin has been rubbing it on his forehead. It is such a strong smell that I had doubted Austin would put it on a second time, but he has been putting in on when he feels a headache coming on and he says it is working. Whether it's really working or not, he seems to say it does ... so that's what matters. He certainly does smell pretty :-)
So with Austin's counts above the neutrapenic mark and Erika feeling much better, it was a go ahead as planned on Thursday. We were able to slip an afternoon visit with Tricia and the kids before heading to Disney on Ice. It was a nice day and the kids had a good time. Erika wasn't as fascinated with the show as I thought she would have been, at times she was more interested in the little boy sitting behind us. She did spend some time dancing and clapping in between playing with her hair band and switching laps. Maybe next year she'll be more focused! When Aunt Sharon had asked her what her favorite part was she told her ... Nana was ... "I love Nana". (Nana wasn't even there!) LOL
Our busy day didn't end there, Grampie & Bonnie were waiting for us at home. We didn't get back until 10:00, so it ended up being a late night for everybody. Grampie & Bonnie had come up for the night (from Rochester, NY) so we could spend yesterday together. We had a quiet morning spending time catching up, then headed off for the day. We went for a tour at Niagara Under Glass, which was interesting and then had a great dinner in Niagara Falls. It was so good to get out ... it feels like it's been a zillion years!! The kids were so excited that they were able to visit their cousin's house while we were in Niagara Falls.
We woke up this morning to a BEAUTIFUL day here in Ontario!!! Finally, wahooooo!! The temp is supposed to be 8 degrees, but judging by the kids out there in their t-shirts, I'd say they think it's more like 18!! I'm sure most of you can relate ...
I knew it was coming, today was the day ... Austin's hair started to fall out. This morning he started to pull out pieces of hair, so he asked if he could go get it cut off. He really really didn't want his hair to be gone, but he thought it would be better to get it over with and shave it off. So we did. This afternoon, Austin's hair is no more. Poor little guy! As much as he didn't want to lose his hair again, he knows it will grow back - so he says it's OK (he guesses).
That's about it for now, we will check counts again on Monday. Platelets are what I'll be watching for, hopefully above the transfusion mark!
Take care,
Love Beth
Wednesday, March 12, 2003 10:06 AM CST
As expected, Monday's clinic visit was long as Austin needed both a red blood transfusion and platelets. Hemoglobin dropped to 78, platelets to 13. His neutraphils were still at 0.1, so I am thinking he has hit bottom and can only go up from here! It was a long day, but we managed to keep busy enough to keep our minds off the time. Austin recruited Cathy, the child life specialist to play the famous Pokemon board game with him, so that in itself took up most of the day!
The headaches are still coming on a regular basis, Tylenol seems to take them away. (That and a cold face cloth that Austin has been wearing over his head the past week). The blood transfusion seems to have given him some energy that was lost and he looks much better. He was getting quite pale.
Our March break is slipping away from us as we have been in lock down around here. Hopefully Austin's counts will be better tomorrow and we can get out. We have tickets to Disney on Ice tomorrow night and I am hoping we can ALL go. Austin knows that if he is neutrapenic, he will be staying home ... and he's not too happy about that ... and our little Miss Erika spiked a fever last night out of the blue, so I hope she feels better. She will absolutely LOVE going!! She has been cooped up in our room today with Amber (who has a bad cough) so that her path doesn't cross Austin's. Amber is such a great big sister, she has been busy reading to her and playing games to keep her busy.
Speaking of Erika, here she is and she's wanting to cuddle ... so I'm off - hopefully with a better update next time!
Take care,
Love Beth
Saturday, March 8, 2003 9:02 AM CST
The last two weeks have just flown by, hopefully next week flies by just as fast! The kids are home for their March break and I have no idea what we are going to do to keep them busy. There is so much snow outside that I'd think they'd love to play out there, but they haven't even stepped outside other than to catch the bus. Right now the boys are busy making crafts together and the girls are downstairs watching TV. It's pretty quiet, maybe that's a good sign of the week to come ????
Tuesday's clinic visit went good. The main reason we had his blood checked was to see if his pottasium was okay, which it was. His pottasium was on the low side during his admission and he needed some IV. They wanted to make sure the level didn't drop after discontinuing the IV. His other blood counts were all in good ranges for being out of a chemo one week. Hemoglobin 99, platelets 108, WC 3.0, neutraphils 1.5. We were out of there pretty quick, so we popped in on Tricia to check out the new house. Austin is looking very forward to going back and has already marked it down on his calendar. TRISH IS HUS. (Trish's house). He is so funny.
Which reminds me, Austin lost his "toof" the other night. Finally after a couple of weeks wiggling this darned tooth it came out. He ran to get an envelope and drew a picture of a tooth fairy and wrote "Austins toof" on it. The kids kind of gave Austin a hard time about his spelling, but I've noticed in the last couple of weeks that he writes "f" for the sh sound. Even when he wrote Trish he wrote Trifh at first until I corrected him. I'm very curious to hear sounds the way he would hear them. His speech sounds unaffected by his hearing as he pronounces things just fine. Getting back to the tooth thing, Austin woke up the next morning with the envelope in his hand and looked at me with this look and said "the tooth fairy didn't come". I kept my cool in front of him, but when I left the room I had to slap myself. I try to be a good mother, honest I do :-) , but I will be the first to admit, I am the suckiest tooth fairy in the world. Once Aaron had to wait five nights before the tooth fairy came. I can't believe my mind!! The other night I thought about it not ten minutes before I went to bed ... I couldn't believe I forgot!!
Aaron had his last playoff game on Wednesday night - they won 5 games out of 6. They now move to the finals to play for the championship. I think it's the best 2/3. Should be good!!
Yesterday's clinic visit was just as quick as Tuesday's. Austin's counts are still above transfusion marks, but have fell quite a bit. Hemoglobin was 87, platelets 44, WC 0.7 with neutraphils of 0.1. He will probably need to be transfused on Monday, and we're praying we get through the week without a fever. If he develops a fever in the next few days, he would be admitted back to the hospital. We don't want that :-(
Other than the low counts, Austin is doing well. He has been a little more on the tired side, but functioning through his day just fine. He has been experiencing a few bad headaches as well, but Tylenol seems to get them to break. His eye is still blackish underneath and has started to look a bit swollen at times. Doesn't seem to be bothering him though.
Not much planned in the next few days as we plan to keep Austin home to limit his exposure to germs. Hopefully by the end of the week we'll be able to get out and do a couple of things with the kids!
Happy March Break!!
Love Beth
Tuesday, March 4, 2003 7:32 AM CST
Hello,
Just a quick note before we head off to clinic this morning to let you all know that Austin's week in the hospital went well. His chemo was uneventful, and he has come home in great spirits.
The highlights of the week included a Pokemon board game that we spent hours each day playing, new Pokemon cards, Nintendo (Pokemon of course!) - I AM POKEMONED OUT!!! His week went by so fast as the board game took our minds off everything for a better part of each day. He was happy to have had so many visitors this week!
Anyway, gotta run ... I'll check in a bit later.
Love Beth
Friday, February 21, 2003 10:51 AM CST
We heard from Austin’s doctor yesterday afternoon. He has contacted the director of a Phase I study using humanized antibodies. He was informed that the study was closed temporarily. He was also told that there was an open window (whatever that means) and Austin’s name could be placed on the waiting list. There are only so many children who get picked to participate, so they actually do this using a lottery style method. I have visions of them putting kids names into a hat and pulling them out - which probably isn’t far off. The cutoff for this window is tonight. The great news is we made it in time to get his name in there. Now we wait ...
SEE UPDATE AT THE BOTTOM OF THE PAGE.
This is a Phase I study, which means it’s main purpose is to define the maximum tolerable dose in patients and determine toxicities. Whether or not it is efficable at this point would be an added bonus for them. The way I see it is that we have nothing to lose, all proven therapies have had to start out in this way, so you never know.
The only other thing worth mentioning at this point is that the closest hospital to administer these antibodies is in Wisconsin.
We are waiting to hear from his doctor on our next move, whether it be the antibodies or another round of chemo in the meantime. If Austin starts another round of chemo and gets called for the antibodies, he wouldn’t be eligible. We’ll see how long the doctor is willing to wait before he goes ahead with treatment.
As for Austin, he is at school for his FIFTH time this week!! He made it an entire week! Yesterday Amber came home and was excited to tell us that Austin was the only one in his class that got perfect on their math test. Way to go Austin!!
I found this story in his school bag yesterday. He was supposed to write a story, so this was his. He said he didn’t know what else to write about, so he wrote about his cancer.
Austins kansr
by Austin
I frst got mi kansr win I wus 3. Win avr I wk up I had a vre bad baly eak. So I wint tow mi doodrs and he sad I had kansr. Dan mi hstpll was mikmastr and I lik it dir. Its vire vin dar. I had mi kansr for 4 yrs.
Translation:
I first got my cancer when I was three. Whenever I woke up I had a very bad belly ache. So I went to my doctors and he said I had cancer. Then my hospital was McMaster and I like it there. It’s very fun there. I had my cancer for four years.
Austin ... we are so very proud of you!!
Thank you for all of the encouraging guestbook entries and emails. It helps to get through
this knowing we are not so alone!
Take care,
Love Beth
UPDATE: I just got off the phone with Austin's doctor. He said that Austin has been accepted into the study and is #12 on the waiting list. There is more than one centre doing the study, so the kids are spread out. He was told that Austin is #3 on the waiting list for Madison Wisconsin, which is the main centre conducting the study. I'm not sure how many kids are put on each cohort, so we have no idea what the time frame would be. At this time, the study is closed and will be reopening soon, although they can't give a hint of when that will be. Our doctor is at a loss at whether or not to start another chemo. He will be contacting Dr. Sondel again to get his take on our situation. I will be speaking to our doctor at the beginning of the week. He also said that Dr. Sondel sounded rather enthusiastic about Austin entering into the study. I'm sure it had something to do with a certain doctor telling him how amazing Austin really is!!
ANOTHER UPDATE: (It's been that kind of day)
Austin's doctor just received an email from Dr. Sondel suggesting that the trial will most likely reopen the beginning of April. He was very optimistic about Austin's chances of getting on at that time. In the meantime, Austin will be admitted on Tuesday night (as long as his counts are OK) to begin a five day chemo using Topotecan / Cyclophosphamide.
So now that that's all sorted out, I'm off to enjoy our weekend. Aaron has a hockey game tonight, I'm looking forward to my escape at the arena :-)
Wednesday, February 19, 2003 10:17 AM CST
I prayed that I had better news ...
Austin's tumor in his head is growing. The tumor was not responsive to the radiation, nor the chemo that he has had recently. The tumor is deteriorating the sphenoid bone and was obviously larger compared to the one in November. The oncologist hasn't had a chance to see the MRI for himself, but had the radiologist give him a verbal report.
As you can all imagine, Glen & I are crushed. We discussed some options left to try, there are only a few. We will be hearing back from the doctor by Friday. I will fill you all in when I hear from him.
I don't know what else to type ...
Friday, February 14, 2003 8:43 PM CST
Happy Valentines Day!
Austin made it to school this morning - no problem! Sounds like he had a fun day - he enjoyed his valentine party and all the hype that went around it. He managed to make it outside for recess today and had lots of fun with his beyblades. For the first time in weeks, Austin seems almost back to his old self! It's amazing what a couple days of school (& normal) can do for a kid!! I say this because he has been so quiet and withdrawn lately - so it's good to see that it might just be a good case of "boredom" he's going through.
I was totally blown away this afternoon when he was showing me his work from today. He took out a spelling test that they did today - and he got 6/7 !!!!!!!!!!!! WAY TO GO AUSTIN !!!!!! He only had one word wrong - he put "hot" for "pot" - he told me that the other kids in the class were very loud and he couldn't hear the teacher. He thought she said hot. SO ACTUALLY - he got PERFECT :-) This is a good example of the problems he has with his hearing, and the reason he would need a hearing system if he were able to attend school on a regular basis.
Aaron had his first playoff game tonight - they won 5-4. It was a good game!!
I'm off to get these guys to bed, hope you all have a great weekend.
Take care,
Love Beth
P.S. MRI ON MONDAY
Thursday, February 13, 2003
Ten minutes before the bus came, Austin backed out of school today. He said he wasn't feeling right. He looked a bit tired, but seems to be fine now. I'm hoping he will go again tomorrow for his valentine's party.
Wednesday, February 12, 2003
After being away almost three months from school, Austin finally made it back! He had a great day and didn't seem to miss a beat, what a guy!! He picked a perfect day to go back, they were busy making a valentine's craft, had pizza day for lunch, and went skating in the afternoon. I am so proud of him :-) He is looking very forward to going again tomorrow!
Erika and I spent a very lazy morning watching TV. Erika was very happy to have absolute control over the remote. We cuddled and watched three hours of two year old programs! It was nice to spend some time alone with her :-)
Austin is busy making his valentine's cards for Friday.
It's been a good day!
Take care,
Love Beth
Tuesday, February 11, 2003
The good news is Austin's counts have jumped back up high enough to start another chemo. His platelets today were 104, his white count high enough to stop the neupogen. The nerve wracking news is that his doctor wants to wait until his MRI before deciding whether or not to keep him on the irinotecan. His MRI isn't until next Monday, then of course, we will have to wait for results and give them time to decide on what to do. Ho hum ....
I understand the doctor's position and know that it is best that we wait, but it is always so tough waiting. On the other hand, this gives Austin the rest of the week away from the hospital. He hasn't been to school since the middle of November some time ... so for the first time in forever, Austin will be going to school tomorrow. He has already packed his bag and has it ready for the morning. He has planned it all out ... I will have to tape Pokemon and Yu-gi-oh for him because he will be gone before they start, and I have to tape Pokemon in the afternoon, because he won't be home before then. I had to promise him I would so that he could give school the thumbs up. Hopefully he will be able to go for the rest of the week, we'll see how tomorrow goes!
Our weekend in Peterborough was good. Aaron's hockey games were awesome!! They came in 1st place again. 3/3 games!! The second game on Saturday was the most exciting - Aaron tied the game at 1-1 in the 2nd period, and it stayed that way forcing them into overtime. They had one minute periods which started 5 on 5, then 4 on 4, etc. until it got down to 1 on 1. It was way too tense. The kids had a great time all around. The hotel was fun, they swam most of the time. After ALOT of thought, we decided to let Austin go in the pool too. I'm glad we did, he had a great time, and didn't feel so left out! It was an indoor / outdoor pool, so the kids were swimming outside in -10C weather. It was probably colder than that with the windchill. THEY WERE NUTS!!
I posted a picture of the kids in the pool - check it out. I'll try to put up more when I get a chance.
I haven't talked much about Austin's hearing, but from time to time you can tell that he is missing sounds or parts of words. Sometimes he thinks you are saying something totally different than what you are saying, especially when we're in the van and he can't see your mouth moving. This morning I couldn't stop laughing at him - there was a commercial on the radio - YOU CAN DINE for $6.99. That's what they were saying. LOL. Austin says to me "MOM, I don't get it ... WHY would anybody pay $7.00 to die??" LOL It was too funny, he was so serious ...
Anyway, will let you know how school goes ..
Take care,
Love Beth
Thursday, February 6, 2003 8:27 PM CST
As you may have noticed, the Caringbridge server has been doing some work on their websites, so from time to time you might find Austin’s webpage down, or looking kind of strange :-) Hopefully they work all their bugs out, but in the mean time, we have been asked to be patient with them.
We’ve been keeping up with the busy pace since the weekend. Aaron had his last hockey game of the season on Tuesday night. They have had such a remarkable year, only losing two games all season. They are in ”1st” place in the league and will begin playoffs soon. By far, this has been the most exciting year for Aaron as well as having the chance to play with some pretty neat kids! The whole team clicks which makes it fun for everyone. They are in a tournament this weekend in Peterborough which we are all looking very forward to.
We had a visit with Father Andy yesterday. Austin and I enjoyed his company and were comforted by his words of hope. He began a novena for Austin last night. He will be praying to Blessed Kateri Tekakwitha.
Wednesday, February 5, 2003 7:27 AM CST
Hello,
Thought you'd like this picture of Austin, although I felt a bit odd putting it up. This was Austin's school picture that was taken in October. As you can see :-) he is very bald!! I'm not sure I've mentioned his hair in any recent journals, but his hair has grown in - I can't even believe that this picture was only taken less than three months ago. As always, we get so used to seeing him one way that it feels funny to look at him the other way (did that make sense??) His hair is actually long enough that he spiked it the other day and the spikes were 1/2 inch long. It is a little patchy and pretty thin, but it fills his head up pretty good :-) He did lose a weeny bit on the sides from the radiation.
I want to welcome Austin's new friend Hohni to our site. Thank you for "adopting" Austin as your caringbridge pal. I look forward to your visits :-)
The weekend was really busy. Aaron had hockey x 2 and he had his birthday sleepover. He had four kids over for the night. Don't ask me what I was thinking ... five 10 / 11 year olds, and the other three kids - whoa - it was crazy. By about ten oclock, I wondered if the night was ever going to end and questioned my sanity for planning the night in the first place. Luckily they quieted down around eleven and got themselves to sleep about 12:30. From there it was quiet :-) They spent most of the morning outside playing baseball. Aaron had a really good time, I'm happy for him that he was finally able to celebrate his birthday the way he wanted to!!
Once Aaron's friends left, Austin & Amber had Marky & Catherine over for the rest of the afternoon and night. Austin and Marky haven't seen each other for so long, they really missed each other. They spent the day in Austin's room playing Nintendo and Pokemon games. It was so nice to see Austin just being a normal kid for a while!
Still haven't heard from the tutor.
Clinic visit was yesterday. His counts looked good. Platelets came up to 57, just a ways to go before they get to the 100 they want to see to start the next round of chemo. His white count looked great, but not great enough to stop the neupogen injections yet. I had a chance to sit down with the oncologist and get him caught up on what's been happening the last couple of months. We didn't really discuss anything noteworthy. We will wait to see what the MRI shows and continue talking afterwards. Depending on what the scan shows will help in determining where we go from here ...
Just a small note to that pest who signed the guestbook ... you're a turkey!! I'm thinking about you today (((hugs))) Tricia is in the middle of moving to their new house and has started packing everything up to go. Of course this means Ashley's things as well, which has been so difficult for her. Please keep Tricia and Ken in your prayers as they continue to struggle with the loss of their beautiful daughter. My heart aches for them.
Will update soon,
Love Beth
Thursday, January 30, 2003 at 08:46 PM (CST)
Today was a much better day for Austin count wise. His counts are on the upswing which is a bit of a relief. Hemoglobin is back up to 105, and his white count jumped up to 6.8 thanks to the neupogen injections he gets daily. Platelets were the same at 34, but at least they didn't go down :-) I have booked some time to speak with his oncologist on Tuesday to touch base about everything. The MRI has been booked for the 17th of Feb.
Austin and I had a great day together. Since our clinic visit was a quick in and out, Austin held me to my promise to play a Pokemon board game with him. We started the other day, but Erika was too busy and we couldn't concentrate on her and the game, so I told him we would come to clinic Erikaless on Thursday and play. I thought I was off the hook since the child life girls couldn't find it, but as we were leaving one of the girls came into the clinic holding the game as if it were a prize because she found it :-), so we left the clinic and went to the playroom to have what turned out to be a pretty serious game of Pokemon. It turns out to be a pretty good game, I guess it's a good thing I'm all up on Pokemon otherwise I wouldn't have known what the heck I was doing! After two grueling hours!! Austin finally proved that HE IS THE MASTER!!! Well, we all knew that anyway ...
From there we had a bit of shopping to do and as always Austin is so helpful at picking out all that we need (and then some). He had the day mapped out it seems, because once we were done our shopping, he reminded me that on Monday I told him that he could rent a video game next time we went to clinic. He was pretty excited to find a Digimon game for Playstation and couldn't wait to get home to play it. Even though he seemed to be happy having a "Mommy & Austin" day, he couldn't stop himself from checking out the time all afternoon. He wanted to make sure we were home at 4:00 so that he didn't miss his TV shows. He has turned into a satellite freak. One thing is for sure, he definitely knows how to read the "guide" to see what's on and when. Wish he had that much interest in reading a book once in a while :-)
When we got home, there was a message from the school saying that they have found a tutor for Austin. I haven't spoke to her yet, but she will start in the next week or so. It ends up that Amber's favorite teacher in the whole world will be tutoring Austin "after" school. I just hope that Amber gives them some space so that Austin can get some learning in. She has taught both Aaron and Amber. Austin knows her well, so he is excited to have her come. He isn't so excited that it will be after school and cutting into his 4:00 TV shows!!
Well, we're off for a whole four days without a trip to the hospital. The weekend is lining up to be busy already, with Aaron's hockey and his birthday sleepover. It was Aaron's 11th birthday last week, but since he had a hockey game that night, he postponed having his friends over until this weekend. I can't believe how fast time is going ... eleven years old already, wow!
Before I sign off, I just want to say thank you for all the wonderful guestbook entries. I don't know what I'd do without you guys :-)
Take care and have a great weekend,
Love Beth
Tuesday, January 28, 2003 at 10:14 AM (CST)
Austin's clinic check yesterday was a quick in and out to have counts checked. His counts are really stinking. His hemoglobin has dropped from 108 to 94, and platelets went down again to 30. White count is still hanging in there, but very low at 1.1. This would all be fine, except he would have been due to start another round of chemotherapy yesterday. With these counts, I can guess he won't start for at least another two weeks or more. His eye is concerning as well. It started to clear up last week and looked better than it had in so long, but yesterday the black is back and it seems to be getting darker every time I look at him. I don't like it at all!
Of course he isn't fizzed by any of this, he carries on like it's any other day. I had to convince myself not to panic last night when he decided he was going skating on the pond - of course I'm thinking platelets, he's only thinking about having fun!! He's only had skates on a handful of times, so I was very surprised at how well he was keeping his balance. I can't believe how cold it's been outside, so I was a bit nervous having them out for so long. Kids are too much, they actually came in saying they were "hot" after spending almost two hours out there.
So once again, we're here having a pretty quiet day. Austin is really itching to go to school, he keeps asking and although he understands why he can't, he gets the jist that it just isn't fair. He hasn't been to school since November. There is still one girl off with chicken pox, so we're just waiting to see if there are any other kids to follow. I found out that the daycare in town has had lots of kids break out in the last couple of weeks as well, so I will continue to keep Austin and Erika away from stores, hockey, etc. until I know for sure it's all clear. Hopefully soon.
That's about it for now.
Love Beth
Sunday, January 26, 2003
Austin's MRI was cancelled for tomorrow. There was some miscommunication as to when it should have been booked. The doctor wants to wait until at least six weeks have passed since his radiation. (Middle of February) Most of the swelling should be gone by then. I am pleased that our clinic took the stand to cancel and rebook the MRI, it makes no sense to scan if there is still a chance of not seeing the "clear" picture. This would only cause stress that we really don't need. I want to know that what they are seeing is not swollen tissue, or better yet that they don't see anything at all :-)
It's been a quiet weekend, Aaron had hockey yesterday, has again today and tomorrow. They are almost done their season.
Austin is looking great and feeling good! His counts fell a bit again yesterday, platelets are down to 34. White count fell as well. By now his white count would have been in double digits, it is only 1.1. (Better than 0 I suppose) We will check again tomorrow.
Beth
Wednesday, January 22, 2003 at 10:26AM
Check out the new pictures
Things are pretty quiet as we wait for Austin's counts to recover from his last round of chemo. His platelets are falling, which hadn't happened in the previous three rounds - so I'm not sure what that means. Yesterday's check they were at 40, still way above the transfusion mark, but still low enough to wonder what's going on. I would say that judging by his last round and the amount of time that it took his white count to bounce back up that this chemo agent is starting to show it's toxic effects on Austin. We will wait and see how long it takes his platelets to bounce back and go from there.
Finally his black eye seems to be disappearing. The red is totally gone, and there is just a faint bit of black underneath. I have noticed in the last couple of weeks that he isn't eating as well as he normally does, so to me his cheeks look a bit sunken. Others say he looks great. Hopefully his appetite picks up soon - he has been going through such a fussy time with eating. He used to eat EVERYTHING, and he always was the first one to try new things. Lately he has restricted his diet to: grilled cheese, chicken noodle soup (in a box), bologna sandwiches, spaghetti or rice. Thank goodness he still enjoys his cereal in the morning. It has been a challenge to find things that he will eat, but if he gives it the thumbs up, he doesn't seem to have a problem packing it away. He also has to put hot sauce on everything he eats - yes, even the bologna sandwiches. YUCK. He puts quite a bit on, and has done this for quite some time. Glen and I wonder if his taste buds have been affected by all of the chemo. Poor little guy, of course he would love to eat all of the things he shouldn't be eating - and has actually been caught a few times hiding things under his pillow. I was really hoping that his sugar levels would even out after the radiation, but it hasn't changed at all. So I guess that theory is out the window.
As I said, things are pretty quiet around here. Our days find us with not much to do. Austin would be able to go to school, but there is still a chain of chicken pox going around. I think the last time he was able to go to school was in November. I spoke to the principal yesterday who said on top of the chicken pox alert, there were also a lot of kids coming to school with nasty colds, etc. - so it's probably not the best place for Austin to be anyway. I had called to ask if he made any headway on finding Austin a new teacher, which he hadn't, so he will be making some phone calls and getting back to me next week. Hopefully he finds someone soon, I have some great concerns about the lack of schooling that Austin has received and could probably talk your ear off for an hour over it!
One last thing before I'm off to make Austin some Kraft Dinner (yahoo - he hasn't asked for this for a long time - we'll just see if he eats it when I put it in front of him!)
During Austin's radiation, Austin and I were sitting waiting for the doctor when a woman came up to Austin and started asking him about his gameboy. She was going to get one for her granddaughter, so she was asking Austin's opinion about what games she might get and so on. Of course, Austin is so quiet but he did talk to her for a couple of minutes. A couple of days later while I was waiting for Austin's radiation to be done, this woman came up to me and told me she had found a gameboy for her granddaughter. I spoke with her for a couple of minutes, and had asked what game she finally chose. She told me the name, but I hadn't heard of it. She had said that her granddaughter's both loved the TV show and was surprised my kids hadn't heard of it. She thought maybe because her one granddaughter was a bit younger - she was two. When I told her I HAD a two year old, and I still haven't heard of it, I mentioned that it could be because it was on cable and that we didn't get cable. Jokingly I told her that Austin looks forward to going to the hospital just so that he can watch Teletoons. That was about the conversation and I didn't see her again until Christmas Eve.
Do you remember the part about Christmas Eve where I was in the lobby with Austin lying on the couch sleeping and the carolers in the background and the keys in the van?? OK, as the carolers were finishing, someone called out that the CAA truck was there so I stood up and there was this lady (she was actually one of the woman singing) who came up to me telling me she was so glad to see me. She asked if I remembered the other day when we were talking about cable. I said of course, so she went on to say that she really wanted to have this set up for Austin for Christmas, but wasn't able to, but her and her neighbours were going to get a satellite dish for Austin and a year's worth of "TV"!!! I really lost it then, not only is this the nicest thing for someone to do, this woman didn't even realize that this has been Austin's dream wish for three years. She had no idea that we have sat around the kitchen table a hundred times with Austin dreaming about having all these channels right in his own home. OH - she has no idea!!!!!! Christmas came and went and I didn't tell Austin about this woman and her announcement until I heard from her again telling me it's all a go, and it was being installed. Austin's eyes were as wide as I've ever seen them, and he had a perma smile a mile long the entire day. He is so happy and I can't even begin to tell you how thankful we are to this woman, a total stranger who has changed Austin's life for the next year!! When I met with her one day, I had to ask her why?? she was doing this for Austin, as she must see many other children in her job. (She works at Henderson). She flat out told me that the second she saw Austin he melted her heart and she just wanted to go give him a hug. Just that simple, there is something about him. So when I had mentioned about the kids not having cable, she immediately thought that this was something she wanted to do. She opened an account for him and her family and neighbours have all pitched in to have this done for our little boy. If you are reading this, thank you Millie from the bottom of our hearts. The kids are loving their TV and Austin can now watch Pokemon 4 x a day, and has branched out and is hooked on Beyblades, Yu-Gi-Oh, Uh Oh and DragonBall Z.
Once again, we realize that we are so blessed to have so many people getting us through these tough times. There have been so many acts of kindness that we have witnessed, never in a million years will we be able to repay all that has been done for us. We hope that you all know that we are extremely grateful for all of the support that we do receive and there really are no words to express this. We feel it big in our hearts as Austin does. Thank you.
Anyway, thought I'd share that - better be off to make lunch now. Clinic at the end of the week and an MRI on Monday, will let you know how it goes.
Love to all,
Beth
Tuesday, January 14, 2003 at 07:16 AM (CST)
Hello,
A week has past again already! Since our last update, there isn't much to update you with. Austin's chemo went pretty smooth. We were in and out pretty quick (a few hours) each day and there weren't any other problems concerning his blood pressure. He has been feeling good, eating well and looking good.
At the beginning of his radiation, Austin's eye started to turn a bit black underneath. It's now a full blown black eye again. (A couple of weeks now). Hopefully it's because of the swelling that the doctors said he will experience from the radiation. ???
Not much else happening ... Erika is potty training and that is going really good - she's such a BIG girl!! Aaron's hockey team is still going strong. They have only lost one game all year.
We're off to clinic this morning, will let you know how it goes. Austin is officially off chicken pox alert and is allowed back to the clinic. Thank goodness he didn't get them :-)
See you soon,
Love Beth
Tuesday, January 07, 2003 at 07:20 AM (CST)
Hello,
Thought I'd post really quick before we left for the hospital to let you know how yesterday went.
Austin's neutraphils came up enough that he was able to start another chemo. He was admitted to the ward since he is not able to go into the clinic until next week, instead he will go on LOA's after his treatment is done each day. Yesterday was kind of messed up because we had to wait for his counts to decide what we were doing, so he didn't end up starting his chemo until the evening. He was all set to go home by 8:30 and the nurse took his blood pressure before he left. It was 156/101, so she had to page the resident as there were orders to give him medication if the (bottom #) was over 90. If he took the pill, he would have to stay the night - so we waited because we know that Austin's blood pressure goes up and down all the time. We checked quite a few times in the next couple of hours until finally around 11:00 it broke and went back down to 120/70. So we got home around 11:30pm, and are off again this morning to start his chemo for 11am. Hopefully today will be a bit quicker :-)
So, we are very relieved that Austin's counts came up a bit on their own (took 50 days). Round by round, he keeps going ...
Will be back soon,
Love Beth
Friday, January 03, 2003 at 09:14 AM (CST)
Wednesday, January 1, 2003
Happy New Year!! We hope that everyone has had a good holiday and our best wishes are sent to you for the year 2003. Austin managed to stay awake to welcome in the New Year. You might remember last year he fell asleep three minutes before twelve. He was geared this year, even our little Erika was wide awake. She probably wondered what the heck was going on, but she had fun doing it anyway!
Today we are having a lazy day. My only goal for today is to get this journal entry posted. (Guess I blew that one) Get ready for a long one ...
Monday, December 23, 2002
Wow, I can’t believe how fast the days are going. Our days have been so fast paced it’s hard to find a minute to let you all know how it’s going!
Austin’s last radiation treatment will be tomorrow. He has handled everything exceptionally well, I am so very proud of him. He hasn’t fussed at all having to wake up at 6:00am most mornings to get to his appointments and has even managed to get through his day without pooping out. Way to go Austin!! The technicians at the Cancer Centre have been terrific, they get us in and out of there zippity split. Today they surprised Austin with a stuffed Rudolph who’s nose lights up and plays a tune, and even nicer, they gave him one to give to Erika as well. Erika was able to come along with us last week and even in that short time, everyone who’s path we crossed this morning asked Austin where his sister was. Austin has also become good buddies with the doorman “John”.
The third day of radiation, John surprised Austin with a bucket of cars which was very nice of him. Of course Austin is so shy that it always looks like he doesn’t appreciate these things, but as always, once we got into the van he couldn’t wait to dig in and see what he got!
We made it home this morning in time for Aaron’s 9am hockey tournament. They played three games and won them all!! Aaron went into the boards the first game and hurt his tailbone. He was hurting pretty bad, but managed to play the next two games. Guess Austin’s not the only tough guy in the family :-)
Last Friday’s clinic visit we were surprised to find out that Austin’s white count had dropped again. He has been neutrapenic since Dec. 16. His neutraphils were 0.4, which means that should he spike a fever, he will be admitted to the hospital. Not good, seeing as Christmas is now two days away. We have been praying for no fevers ...
Tuesday, December 24, 2002
Austin woke up this morning for his last radiation treatment. He wasn’t his normal perky self and looked so tired. I thought maybe it was because he had went to bed a bit later the night before. He was too tired to eat, but managed to get a bit of breakfast in before we left. Once we got to the radiation clinic, it was very apparent that Austin was not feeling well at all. He looked so tired and he felt warm. I asked the nurse if she could take his
temperature, and would you believe it???? IT WAS 38.5 !! Last check on Friday he was neutrapenic, this means we will be admitted to the hospital on Christmas Eve. You can only imagine how I felt. I tried really hard not to show Austin how upset I was, but tears were coming anyway. I tried my best to reassure Austin that it didn’t matter where we were for Christmas, as long as we were together ... who was I trying to fool ... of course it matters, truth is it sucked bigtime!
As yucky as Austin felt, he was a sport about getting his last radiation treatment done. The girls at the clinic were absolutely wonderful and made Austin’s experience doing radiation a positive one. He was able to bring home his mask as well as a beautiful quilt that was given to him. They will also be sending him a gift certificate to Toys R Us, and made up a pretty cool “bravery award”. “John the doorman” also had a gift waiting for Austin as we headed out. As John was talking to Austin, I was getting my keys out to go - and could you believe it - I couldn’t find them. Yep, I locked the keys in the van. By this time Austin was feeling so crummy he could barely stay standing, so “John” kept him company while I called CAA to come get my keys out. When I got back, John and Austin were settled on a couch in the lobby and there behind them were a group of women singing Christmas Carols. It was as if they were singing right to Austin, although I knew that they were there for the entire lobby. It was so touching! As we were waiting for the CAA, the carolers kept singing right behind Austin and I, as he was sleeping soundly on my lap. The music was too much for my mood, and I just sat there crying. At one point I was going to turn around and ask if they were honestly trying to torture me. Songs like Ave Maria, Gloria and What Child is This - what ever happened to Frosty the Snowman??? In addition to the feelings I had about Austin spending Christmas Eve in the hospital and that I had just locked my keys in the van, I was also struggling with the thoughts of Ashley and Trish. In Trish’s words, I was having a meltdown, right in the middle of the lobby. Thank goodness Austin was sleeping and missed it all.
I wish I could tell you that our bad day ended there, but it didn’t. After we finally got my keys (can’t forget that I smacked my thumb in between the van door and a cement wall) and were on our way to Mac to get Austin checked out, I called home to let them know that we might not be home. Glen and I couldn’t believe that this was happening. Austin had asked me if I stepped on a crack or broke a mirror or something. I thought it couldn’t
get much worse, but realized it could when I heard the “CRUNCH” as I backed into my parking spot. I COULDN’T BELIEVE IT!!! I backed right up into a pole :-(
OK, from here I can tell you that the day does get better! Austin had his finger poke and we were THRILLED to hear that his white count had come up a bit and he wasn’t neutrapenic!! MERRY CHRISTMAS!!!!!! I can honestly say that the rest of the morning didn’t matter anymore, what was I even crying about again??? We get to go home!!! What else matters???
One of the best parts of the day was seeing Tricia. She was there visiting the nurses & everybody for Christmas. I was very honored to receive a gift that I will treasure forever. A beautiful bracelet with Ashley’s name on it. Thank you Tricia so very much, I love it!
Austin spent the day with a temperature of 39C (even with Tylenol) and slept in his bed minus about an hour the entire day. I woke up Christmas morning to Austin's little voice asking if 37.3 was good? He was fine all day!!
Christmas Day was wonderful and went way too fast. We had both families here for dinner which made for a great day. The kids spent the next few days playing with their toys and actually all getting along really good - what a treat that was!! Aaron had another hockey tournament on the 30th/31st. They came in first place again. THEY ARE THE CHAMPS!!! New Years Day was very quiet, we spent another lazy day.
Thursday, January 2, 2003
I never had a chance to post about Austin having been exposed to chicken pox on December 15th. We were sitting beside a little baby at the arena who broke into chicken pox that night. The doctors are considering Austin to have had a low risk exposure, but nonetheless Austin has to be isolated from the clinic and the other oncology/hemotology kids until January 12. This meant his finger poke this morning had to happen in Emergency. To recap his counts, his neutraphils have been at 0.5 since December 16, other than on Christmas Eve, when they decided to go up a bit and save Austin having to spend the night in the hospital. Three days later, it went back down to 0.5. The neutraphils need to be at least 1.0 to start a chemo.
Today's counts were the same as last Fridays. Austin's counts are stuck. He is on Day 46 of his last chemo and his neutraphils aren't budging. His hemoglobin (120) and his platelets (104) are both okay, so again the docs are puzzled as to why his counts aren't coming up. I had a chance to talk to one doctor who thinks this might be what they all were expecting and that Austin has hit his breaking point and has chemo'd out. Let's pray to God this isn't the case. Another explanation could be disease progression in the bone marrow.
They don't want to start a chemo without knowing why the counts are still low, that is if they are low because of toxicity it would be risky to start another chemo. On the other hand, if they are low because of disease, they need to start chemo NOW! We will go back on Monday to check his counts - if they are still stuck we will do a bone marrow biopsy on Tuesday and if they have come up a bit, we will start the next chemo.
OK, it has taken me over a week to type this entry, I think I better just post it so that I don’t get too far behind!
Take care,
Love Beth
P.S. TO CORINNE: Corinne, just wanted to let you know that I have replied back to your email, but not sure if you got it. I sent an email towards the beginning of December, but in the last five days have received an email each day from ihug.co.nz saying that my email sent Dec 30 / 31/ Jan 1/ Jan 2, etc. has a WORM.KLEZ virus, even though I haven't sent you emails on those days. I have no way of checking, so I AM NOT sending anybody emails until I find out what's going on. I am also receiving ALOT of blank emails from addresses I've never heard of. Anybody else having this happen??
Thursday, December 19, 2002 at 07:30 AM (CST)
Hello everybody,
Sorry I’ve left you all wondering how Austin is making out. Things are going just fine and Austin is tolerating the radiation just as well as everything else he has had to endure. As I’m writing this Austin & the others are tearing up the house and driving me crazy!
The radiation itself is painless and the doctors have told me that there should be no immediate side effects, other than maybe being tired toward the end of treatment. His treatment is scheduled for seven days - Monday to Friday this week and Monday, Tuesday next week. He will be finished on Christmas Eve. The appointments are early morning and very quick, so that has left us with our days pretty freed up.
The kids are excited about Christmas and counting the days down. I was able to get most of my shopping done yesterday so I’m happy about that, I was getting a little nervous that Santa wasn’t going to make it to our house this year :-)
Speaking of Santa, I have to tell you all what Erika is going around telling everybody who asks her what Santa is going to bring her. Her answer to them is “I’m going to get a lump of coal.” (thanks to Austin for prepping her on that one). I just asked her what she was going to get for Christmas as I’m typing this and her answer this time was “ummm, a scooter, TV and a CD” What a funny girl she is!!
Oh, back to Austin and the plan. I was able to speak with his oncologist about the results of the bone marrow. He didn’t see anything on the aspirates and the biopsies looked good with only tiny bits of nb here and there. This is very comparable to September’s results. So with all the information gathered, they have decided to keep Austin on the irinotecan and check him again at the end of January. That should work out to be another two
rounds. It won’t be until at least six weeks before we can tell if the radiation has had any effect on the tumor in his head. Because of Christmas and New Years, we will start the chemo on January 2nd. This will give Austin another good break without a hospital visit. Sounds good to me!!
Thank you all for checking in on us, it means so much to know that you’re all out there! I will check in again after Austin’s clinic visit on Friday. Until then,
Take care.
Love Beth
Friday, December 13, 2002 at 7:38 PM
UPDATE: SEE BOTTOM OF PAGE
Wednesday, December 11, 2002 at 11:15 AM
Hello,
Well not much has happened since I last wrote. We are still waiting on the results of the bone marrow biopsy that was done last Thursday. Our clinic nurse called to tell me that the results were still pending, so we postponed Austin’s clinic visit until we have word that they have received them. She did tell me that the aspirate was good and that the bone scan and MIBG were both negative. I’m not sure what this means to the doctors, but for me it means that we have NO idea how long this tumor has been in his head since we have NEVER done a CT of his head. The one doctor suggested that a good indication would be the first eye incident which would have been September. A bone scan and MIBG were done after that first incident and were negative as well, I’m sure wondering what they would have seen had they done a CT Scan of his head.
Not that it matters. We are SO SO thankful for the doctor who ordered the CT Scan of his head in the first place. Had she not, we still wouldn’t know that there was anything unordinary going on. Austin’s eye has completely healed, and I’m sure not much more thought would have went into it until the next incident, which could have been alot worse.
The radiation nurse called as well to let me know that Austin will probably start his radiation next week. Thank God. This tumor was found on November 25, it is so frustrating as a parent to go through this “waiting” period as they sort out all they need to.
So for now, we are just hanging around ... Austin is very bored, but feeling wonderful. I wish he was able to go to school, but I can’t risk sending him as there have been at least six kids with chicken pox in the last week or so. His teacher was here yesterday afternoon and they had a good session. We were sad to learn (well, happy for her) that she has accepted a full time teaching position in January and will not be able to see Austin. They made a great team!!
I will let you know as I soon as I do what is going on in the next few days, until then
Take care,
Love Beth
Friday, December 13, 2002
We actually managed to pull off being home every day this week without a medical appointment. The week has gone by so fast though, I feel as if I haven't done a thing. Christmas is coming fast, and I haven't even started shopping - YIKES! We decorated the tree today, so at least our house is starting to look like Christmas!
I got a phone message yesterday saying that the results from the bone marrow biopsy states that Austin has a "small" amount of neuroblastoma. It didn't give any indication how much is "small", so I still don't know if this is better / same / worse than the one done in September. "Small" is good though!
I also heard back from the radiation nurse and Austin will begin his radiation bright and early Monday morning. He will have radiation every day for two weeks. Sounds like they are all very early in the morning since they had to squeeze us in so fast.
Austin had a good day. He spent the afternoon with his teacher - they took it pretty easy today and mostly did crafts and reading. Austin has been emailing the kids in his class for the last couple of days - he's having alot of fun with that! He was also surprised with a gift from the Grade 3/4 class today. Amber brought him home a quilt that the class had made with a very touching note. It was very nice.
Will let you all know how Monday goes. Hope you all have a great weekend,
Love Beth
Friday, December 06, 2002 at 11:59 AM (CST)
December 7 update at the bottom
Hello everybody,
First, thank you all for your thoughts and prayers. Your kind words, encouragement and hugs are all what get us through what would otherwise be a very difficult road traveled.
I know that you have been anxiously waiting on a journal entry. This week has been extremely busy with Austin’s tests and of course all of the normal business that comes along with having four children!
Austin’s MRI on Monday went really well. We were obviously more anxious about it than Austin was, he did an absolute amazing job at lying still for the entire hour. I wasn’t able to go in with him, or see him for that matter, so for the first time ever, I had to sit in the waiting room while he went about it on his own. He also had his bone scan and ultrasound done and once again was the perfect patient.
After all of his scans were done we headed up to the clinic so that the child life specialist could talk to him about what he had to do on Tuesday. Before she could do that, I had to find a way to tell Austin what has been going on. It wasn’t easy to find words, but I somehow managed. As most of you know, Austin calls the cancer in his bone marrow “crumbs” - there is a big story behind how that came about - you can check back in the
journal entries to read about it. Anyway, I told him that the doctors looked at the pictures and could see that there was something behind his eyes, in the middle of his head. They think that some crumbs have went there and have stuck together to make a clump. I told him that there was a special treatment that they call radiation, using a type of energy that could help make the clump go away, and asked if the child life worker could show him
how they would have to help him get ready for the treatment. In less than a minute, he knew that if they were going to shoot energy into his head, he would have to lie very very still so that they made sure it went to where it was supposed to. From there it was easy to explain going to have a mold made of his head and why. He and the child life worker took out his medical play doll and had fun making a mask for it.
When we got home, we had to tell Aaron and Amber what was going on as well. They had some pretty good (and difficult) questions but handled it rather well. I guess it made it easier because Austin was in the background all the while, jumping up and down singing “I’m going to get a laser in my head”, kind of to the tune of na-na-na-na-na. He was also teasing Aaron about getting to go and have a hockey mask made - kind of like - and
you-ou-ou can’t!! I think this was the point in the week where I was able to let go of being sad and realizing that if anyone can get through this - Austin can!! NOT that I didn’t already know that, but it was a huge relief that he now knows what’s going on and is totally okay with it. We talked alot on the way home, and are both so happy and thankful that the doctor’s have found this clump before it could get bigger and make him very sick.
Austin hasn’t stopped asking when he is going to get the laser in his head. You’d think we were going to the amusement park or something.
Tuesday, he had the mold made for radiation. Wednesday was a lot less hectic as he just had his MIBG done. We still don’t have the results from both the bone scan or the MIBG. Thursday Austin was anxiously waiting on his “sleepy medicine” to have his bone marrow biopsy done. Everything went well, although I didn’t have a chance to ask if they got good samples. After his bone marrow, I met with his oncologist to discuss the results
of the MRI
.
The MRI was alot more detailed than the CT Scan was and shows that the mass is more intense than they thought. It is involving the right sphenoid sinus, measuring at least 2 x 3 cm, extending to the clivus (whatever that is) and also involving the right orbital fissure. This MRI has confirmed that what they are seeing is typical of neuroblastoma.
The immediate plan is to radiate the area in his head and hopefully eradicate it totally. Until we have the results of the bone marrow biopsy, the doctor wasn’t willing to discuss options following the radiation. I guess it’s time to put my momma bear shoes on!!!
This afternoon, we have to go back to the Cancer Center to make sure his mask fits properly and have a CT Scan of his head. I hope to have a chance to discuss the radiation and it’s side effects with a doctor today. We talked about it a bit on Tuesday, but Austin was in the room and I couldn’t get into anything too involved. I’m hoping that we leave there today with a date to start, so that I can finally tell Austin when he will have “lasers”
in his head.
I should add that Austin has been feeling absolutely fine. Other than the eye hemorrhage (which is almost gone), there has been no indication that anything is wrong. He is ripping around the house, business as usual - just the way we like it!!!!!!!!
Take care!
Love Beth
Update:
Austin's appointment went well. He had his mask adjusted and prepared for radiation. When I get a moment, I will post the pictures they took of having Austin's mask made. His CT simulation went quickly and Austin was awesome! The mask is very tight on his face and must not be too comfortable - oh how he is so good for these things!! Now we wait to be called for a second simulation and go from there ...
P.S. TO MARY: We heard the last call for Santa over the PA, unfortunately Austin was too busy snoozing in the recovery room after his bone marrow biopsy. Thanks for the heads up though!!
Have a great, safe weekend!
Love Beth
Friday, November 29, 2002 at 10:09 PM (CST)
Today has been a bit of a blur as we have had so much information thrown at us. I will try my best not to get it all mixed up.
Austin had his clinic check done today, it looks as though his blood counts are all doing okay considering he just received chemotherapy last week. He continues to dodge the diarrhea that is associated with the type of chemo he is getting. He is feeling well and has no complaints. His eye is looking much better.
We had a quick talk with his oncologist today who has been obviously working hard to have everything in order for Austin. She has made it clear that the lesion they have found on the CT Scan is most likely tumor, but still can't confirm this until all of the tests are done. It sounds like the MRI on Monday will give them a better idea of what they are dealing with. After speaking with the girls down in MRI, we have learned that Austin will have to lie perfectly still for one hour while he is being scanned. He absolutely cannot move his head during this time. Most often they would sedate a child for such a long scan, but since this was booked as an emergency MRI, he will have to be without sedation. He also has a bone scan booked for Monday morning, which will tell them a bit more.
We were also told today that Austin has an appointment at the Cancer Center (Henderson) to have a mold made of his head to prepare for radiation. This is all new to us, so we have no idea what is involved with receiving radiation, the complications, or the side effects. We will be discussing this with the doctor on Tuesday. Austin's oncologist is one step ahead on this one, making sure that if he does need radiation, everything will be in place for him immediately.
The MIBG scan that will be done on Wednesday will be the one we're waiting on. If this scan has positive uptake in the area shown on the CT Scan, it will be confirmed that this is indeed neuroblastoma. If so, he will begin radiation to that area as soon as possible. If it is negative, we have been told they will request a biopsy be done.
We met with the ENT surgeon this afternoon to discuss what to expect in the event a biopsy is necessary. First off, it wouldn't be done at McMaster, it would need to be done at the General since an image guided surgery would be necessary. McMaster doesn't have that equipment. A neurosurgeon would be doing the surgery as well as the ENT surgeon. It would require a two day stay at least. They would go through his nose to get a tissue sample. He has told us that it would be impossible to remove the tumor because of it's location. A biopsy sounds like it has some pretty scary risks as well. The most likely would be bleeding in the nose, which he will need to have his nose packed for a couple of days. The least likely, but possible risks, include stroke or a brain bleed. So it is easy to understand why they would only want to do a biopsy if only absolutely necessary to diagnose this mass. In his opinion, he feels it is most definitely malignant. The CT Scan shows that the sphenoid bone is being eaten up, which he says could only happen if it were cancer. If it was an infection or a benign tumor, the bone wouldn't be deteriorating like it is. I should mention as well that he explained the mass is resting on the nerves that have something to do with the eyes, weakening the blood vessels, causing the ruptures coming and going. Something like that anyway. Told you, my brain is on overload!
Austin came into the room to be checked after our consult. Poor little guy, we haven't told him anything about what's going on other than we are trying to find out what's been happening to his eye. He was probably wondering why this doctor had to insert a camera up into his nose. I've said it before, I'll say it a zillion times, AUSTIN IS SO BRAVE!!! He didn't even flinch. The doctor informed us that Austin's way was clear - I'm assuming that's a good thing.
So if the tests done next week do not tell them anything more than they know today, Austin will be booked for a biopsy. If it is confirmed that this tumor is neuroblastoma through these tests, he will not require a biopsy and he will begin radiation immediately. Those are the two scenarios set in place.
To add to this horrible mess, we still need to do a bone marrow biopsy. The very thing that we've been fighting with for two years straight becomes back seat for awhile. We pray to God that his bone marrow is and can remain stable in the coming weeks.
I probably have confused everything, maybe it's better I skipped all this stuff and posted next week letting you all know we had a major scare, or that he indeed has a new tumor growing. It sounds alot simpler!!
For now there's not much to do other than wait, so we will make the best of our weekend and deal with next week when it gets here.
Take care,
Love Beth
Wednesday, November 27, 2002 at 12:19 PM (CST)
Well, here we are.
There has been so much going on in the last few weeks, I can hardly believe that such a short time has went by since I told you all that life was pretty calm around here. I will try my best to update you all on what has been going on.
Saturday, November 9, 2002
I think this is where I left off in Austin’s journal, so I will begin here. Glen surprised me on this day with an early birthday present. We went out for the day to shop for new beds for Amber and Erika. While we were out, we stopped at a pet store where Glen had been scheming with the sales clerk for days on getting me a bird. I’ve ALWAYS wanted a bird, so I was totally surprised that Glen had finally agreed to get one after 19 years of being
together. Well, I couldn’t just pick one, so with the kid’s help, I picked out THREE budgies. They have been lots of fun since we’ve got them - I can’t wait to post the picture of Austin with the three birds on his head! We also found a beautiful bedroom set for the girls and had it set to be delivered through the week.
November 11 - 14, 2002
Between hockey practices , hockey pictures, dentist appointments and clinic, I totally redid the girls room. All of their furniture & five years of “stuff” needed to come out of their room and I painted to get ready for their new set. They now have a beautiful “purple” room, just the way Amber always wanted it. They have bunk beds, so Erika has
graduated to her big girl bed. Some nights have been a challenge, she has been a little stinker about going to sleep.
Saturday, November 16, 2002
We celebrated Glen’s 40th birthday with a “surprise” party for him. It was a good night spent with friends, and Glen was indeed surprised. I received a phone call from Tricia that afternoon telling me that they had just spoke to the doctor, and things weren’t good.
Sunday, November 17, 2002
Spent the day at the hospital with the Goud’s. Ashley slept most of day. When I was getting ready to go, she was just waking up but still hadn’t opened her eyes. I whispered to her that I’d be back tomorrow with Austin, and she asked if I could bring Erika too. I told her I couldn’t, but felt so bad. I told her I’d see if I could think of something and let her know in the morning. When I got home, Nana had pointed out that Austin’s eye
looked red. For the third time, the corner of his left eye has hemorraged (sp?). The first two times, the doctors checked and assured me that it was nothing - explaining that something as simple as a cough or sneeze could pop a vessel - and it could happen to anybody, although we were concerned about it - we didn’t make a big deal about it.
Monday, November 18, 2002
Austin started his third round of Irinotecan in the clinic. His platelets were 98, supposed to be 100, they decided to start anyway. Aunt Sharon brought Erika to the hospital for me so that Ashley could visit with her. Ashley was just falling asleep and had asked everybody to leave so she could rest for her play date that afternoon. So we were there only a minute, but I know that she was glad Erika had come. Sharon brought Austin & Erika home with her so that I could stay at the hospital to be with Tricia.
Tuesday, November 19, 2002
Austin’s eye started to get worse instead of better, so the doctor booked an appointment with an eye specialist. By now it was quite bloody and started looking bad. After checking him out thoroughly, the specialist assured me that it was nothing to be concerned about. We were able to hang around the hospital for the afternoon waiting for his appointment which was good, as I was able to be close to Tricia & Ashley. Austin & I went to the cafeteria for lunch and had a really good talk about what was going on with Ashley.
Wednesday, November 20, 2002
This morning, I had to tell Austin that Ashley went to heaven through the night. He stared out the window in the van and didn’t say a word the entire trip to the hospital. While getting his chemo, a child life worker had a talk with him to see what he might be thinking. On the way home, he talked a mile a minute. He asked question after question, picturing in his mind that Ashley was probably painting her nails up in heaven, and had all the other
angels waiting in line to get their’s done. He asked about the balloons, because he overheard us talking in the clinic, and told me he’d like to do that too. He also asked when the next church day was. I told him Sunday and asked why he wanted to know. He said that we needed to go see Father Andy and tell him that Austin Davis’ friend died, and we need all the people to pray for Ashley. He also wanted to ask Father Andy what it was
like for Ashley up in heaven. I didn’t think I could get to our church fast enough. We found Father Andy, and he spent over an hour with us and painted a very clear picture for Austin about what happens when we die. He was totally amazing in his story telling and getting Austin to understand. We later went into the church and the three of us said a prayer for Ashley, which was very nice. Austin left the church and said he felt much
better.
Thursday, November 21, 2002
On the way home from clinic Tuesday afternoon, Austin’s eye started to turn black underneath. I didn’t have them check on Wednesday, but had them check this day. The doctor looked at it for only a second and asked when his next scans were. Not for two weeks, so she asked the nurse to book a CT Scan sooner to be sure that it was nothing. OK, I’m a little more than just a little concerned now, but am trying to stay calm.
Ashley’s visitation was Thursday night.
Friday, November 22, 2002
Austin finished his five day chemo. His eye looks horrible, they have booked the CT Scan for the 25th. Today was Glen’s 40th birthday. We went out for a nice dinner with his family.
Saturday, November 23, 2002
Today was Ashley’s funeral. It was very nice and very much a celebration of her life. I know there are many “new” readers of Austin’s journal, I just want to say thank you to all of you who welcomed me into your lives. Ken and Tricia are blessed to have such a wonderful loving family and such good friends. It was nice to have met so many of you.
Monday, November 25, 2002
Austin had his CT Scan this morning. He did an absolute wonderful job at staying still. He needed three different pictures of his head. They did a CT of his head, orbits and sinuses. He also had his chest and abdomen done since this was booked for next week. I was glad they could fit him in to do the “works”. His eye still looks horrible, but it looks as though it is starting to heal, not as fresh.
This afternoon I got a phone call from the oncologist. She has the results of the CT Scan. Are you all ready for this? You better sit down :-( Austin has a lesion (mass) in a bone in between the eyes. She’s not sure at this time what it is exactly, but has already been on the phone to book an MRI which will tell them a bit more and a consult with an ENT surgeon to do a biopsy. I asked her if it could be anything else besides a tumor. The only
other thing she said it could be was infection, which she doubts is the case since Austin is not having fevers and shows no other sign. She wanted us to come in the next afternoon to talk. Glen and I are in shock and can’t believe this is happening, but of course are trying to remain calm. Austin doesn’t know that anything is going on - yet.
Tuesday, November 26, 2002
Happy Birthday to me. Not exactly the best birthday I’ve had. Glen and I went to meet with the oncologist today to talk about what’s going on. We got there just after 11 oclock, but didn’t end up seeing her until 3:40. As it was, Tricia came today to hang out with us while we waited so we were able to go out for a nice lunch. I have to tell you that she is just totally amazing. I came home to the most beautiful birthday card from Austin. He worked very hard with his teacher to surprise me - it's definitely a keeper!!
After the oncologist called yesterday, she had two other radiologists look over the scans with her. They both feel it is very unlikely that the lesion they are seeing is infection. She thoroughly explained to us where the mass is, so at least now we have a sense of something. The best way to describe it is to have you put your finger in between your eyes and put another finger on top of the middle of your head (pointing down at yourself). Join the lines and that is where it is. Smack dab in the middle of his head. The tumor itself is in the sphenoid bone, which I think is the bone that helps support the brain. It has actually started to deteriorate the bone and come through to the sphenoid sinus cavity. They also believe the tumor is attached to the pituitary gland, which would make a total resection of
the tumor impossible. She has consulted with the ENT surgeon and the neurosurgeon. We have an appointment with the ENT surgeon on Friday to discuss doing a biopsy. I can’t believe all of this.
So as it stands, they can’t be 100% sure that what we are dealing with is in fact neuroblastoma, but they are assuming it is. They need all of the tests done before they can discuss what options are available. I do know that she is consulting with the radiation guy as well.
So, we wait. He will have his MRI on Monday, as well as his bone scan and MIBG injection. Tuesday he will have his bone marrow done, Wednesday his MIBG scan. Hopefully they will have ALL the information they need to determine what in fact this is. Somewhere in this mess, we may need to do a biospy.
It is still somewhat unbelievable to me that this is what it appears to be. I am choosing to believe that it is something else even though the oncologist says that it’s very unlikely - but it’s seems to be the only way I’ll be able to get through the next few days.
And I think that’s about it .... you’re all caught up,
With love,
Beth
Thursday, November 21, 2002 at 06:29 AM (CST)
The last few days have been very difficult. It is with much sadness that I need to tell you
that Austin’s friend Ashley has made her way to heaven, as many of you already know.
She will always be loved and forever in our hearts as we remember her and all the
wonderful things about her. Austin and I will miss her beyond words.
There are so many things and so many emotions that I have experienced in such a short
time, it will be hard for me to express to you all that has gone on. Once again, I am
finding it hard to find the right words for this journal entry. It’s just not that easy.
Austin and I have been blessed to have been given the chance to know Ashley. Her family
has been such an inspiration to us over the past year. I have never witnessed as much love
for a child and faith in God as I have over the past few days. Thank you Tricia and Ken so
much for letting me be a part of that.
Austin and I are on our way to the hospital. He has been getting his chemo this week in
the clinic, and will be done tomorrow. So far so good, he is feeling well. I will update
Austin’s journal, I promise, and get it caught up. There are alot of things I need to write
about.
Thank you all for your thoughts and prayers for Ashley.
Much love,
Beth
Sunday, November 17, 2002 at 02:10 AM (CST)
Hello,
I know that this webpage is intended to keep you updated on Austin, but tonight it will be about a very special girl that we have come to know and love. It is with a very heavy heart that I have to share with you that our little friend Ashley is losing her battle to neuroblastoma. I have learned today that she will soon make her journey to heaven. Her mother Tricia called me this morning with the news that they have only days with their precious daughter.
I can't even begin to imagine the pain that Ashley's parents, Tricia and Ken are experiencing. Through our many many talks, this is something that neither one of us ever wanted to hear - it's something that only belongs in our nightmares. How I pray that they wouldn't have to go through this, it is just too too much. Why them? Why Ashley? Please God, stop it - stop all this craziness, stop taking away all of our precious babies, one by one and causing so much pain.
We have experienced so much saddness with the passing of so many children over the past four years. I have mentioned a few in Austin's journal, but there are so so many more that I haven't spoke of. This time it is different, very very different. This time it's Ashley.
Please dear God, Ashley's parents are praying for a peaceful passing. I am still praying for a miracle.
With much love,
Beth
Wednesday, November 13, 2002 at 07:52 AM (CST)
Hello everybody,
Wow, I didn't realize that it has been so long since I updated, I haven't spent much time on the computer this week ... there hasn't been much going on.
Austin is at school today. It is the first day in a long time that he didn't say "NO" to school. He has been well enough to go, but between clinic visits and home school, he hasn't really had the itch to go. I'm happy that he's decided today was a good day, but I was thinking about how hard it must be for him to just show up like that. He doesn't know any of the kids in his class (except Michael), so every time he goes must feel like it's his first day of school all over again.
Health wise, Austin is feeling good, looks tired - but feeling good. His clinic visits x 2 since my last update were both good. Good counts, no worries. If all goes as planned, we will begin the third round of Irinotecan on the 18th (Monday). Scans, etc. are booked for the beginning of December.
Well, sorry this update isn't all that interesting. I'm having a hard time knowing what to write about lately, which is a good thing ... nothing out of the ordinary (well for us anyway). I will update again soon to let you all know what our little (big guy) Austin has been up to ...
Take care,
Love Beth
Tuesday, November 05, 2002 at 02:35 PM (CST)
Hello everybody,
Just to let everyone know that Austin continues to feel great. His five day chemo is now finished and we can relax for two weeks before the next one. He finished his last day on Saturday and had to be admitted to the ward since the clinic was closed. We got there for 9:00 and finished up just after 2:00. Austin kept himself busy playing Nintendo for the ENTIRE five hours we were there. He wouldn't stop to take a break, I thought his eyes were going to pop out of his head!! He had started a game of Mario (which he's played a zillion times) and wanted to reach 30 stars before it was time to go. By the time they unhooked his IV and told him it was time to go home, he had 28 stars, so needless to say, we had to wait around while he got the other two. He sure is one determined little kid!!
This second round of Irinotecan has seemed to be just as tolerable as the first. He has had absolutely no sign of diarrhea which is amazing his doctors. He had his counts checked this morning in clinic, and again they are absolutely terrific for being the eighth day since his chemo began. I had a chance to ask the pharmacist if Irinotecan is generally "easy" on the bone marrow (blood counts) and he gave me a funny look and said "not always". His funny look I'm sure had something to do with Austin not following any rules around there. I'm a little nervous of course that if the drug is supposed to suppress the bone marrow and it's not, that it might not be doing it's REAL job of suppressing those darn cancer cells. Time will tell ... we will do one more round and then he will be have all of his tests again (the first week in December). It's going to be a long month ....
In the meantime, Austin I'm sure will keep himself busy as usual. This weekend was no exception, he has been non-stop. Sunday he enjoyed himself at Aaron's hockey game running around with all the other kids. Aaron had a great game, scored two goals!! They won 12-0, so far they are undefeated. Once we were home, Austin wasted no time at all calling Marky & Michael over for the evening. He spent Monday morning anticipating his teacher coming for the afternoon. He is doing so well with her, his reading is coming along nicely. She has started preparing Austin for his first confession and first communion. They have fun doing crafts along with all the hard work they do too!
Shortly after she left yesterday, Austin experienced a big bad headache. Not long after he vomitted, but felt fine afterwards. I'm not sure what that was about ... it's possible his blood pressure was high causing the headache, causing the vomit. Or could be the headache was due to having to get sick?? Who knows, but he felt good enough to sit down to a roast beef dinner five minutes after he was sick. He amazes me!!!
Anyway, I will try not to let the week slip by without an update. If you don't hear from us, you know that everything is business as usual !!
Take care,
Love Beth
P.S. I'm not sure if I mentioned it before, but it is worth noting to you. Although Austin had an absolutley wonderful hallowe'en and raked in bags of candy, he was NOT able to even have the pleasure of eating any of it. Because he is not able to use insulin (because he is
still producing his own insulin), he would be at great risk if his blood sugar rose too high, which is definitely what candy would do. We wouldn't be able to lower it fast enough - so, this means ... no candy. He was such a sport though, he divided his candy up ... big pile for Daddy, big pile to share with his friends, and a pile of chips & cheesies for him when he's able to have a bag (he can only have one bag and this counts as a snack - let me
tell you ten chips isn't enough to hold him over in between meals - so we try not to have too many snacks like this!). He had told me the morning before hallowe'en if he had one wish to make, he wished the doctor would come and tell him he didn't have a sugar problem anymore - so that he could eat all of his halloween candy.
Friday, November 01, 2002 at 08:55 PM (CST)
Hello again,
Well, things are going extremely well in Austin's world this week. Today he finished his fourth day of Irinotecan and if I didn't know better, I'd say they were hanging water in his IV. Let's just pray that it's enough to keep those nb cells in line!
As you can see, Austin, aka "the vampire" was able to enjoy a fantastic halloween at the hospital and at home. We started our day pretty early to be in clinic first thing. He was hooked up to his IV and given his anti nausea medicine. The nurses were all aware that Austin was looking forward to the parade they were having through the hospital, so they delayed his chemo by an hour. This allowed Austin to go through the second floor of the hospital with all of the kids that were in hospital, and it was absolutely incredible. From one end of the hosp. to the other, volunteer adults & teenagers, most of them dressed up, formed a solid line on both sides of the halls and gave out candy to the patients. Erika enjoyed her first ever "trick or trickin'" as she called it, and had a blast! At first she wondered what was going on, but by the end of the parade she was running up to people holding her bag open. She was dressed as a monkey through the day. Austin was helped by his hospital friends get through the big line up of ghosts & ghouls, and I had a volunteer or two running to help Erika along. By the end of the parade, I had tears in my eyes ... it was totally awesome what everyone had put together for these kids that otherwise wouldn't have been able to enjoy their Hallowe'en!!
We returned back to the clinic to get Austin's chemo, and were still able to make it home at a half decent time. Once Amber & Aaron got home for school, we packed up and went out for pizza before heading out for the night. Austin decided to change his vampire costume to a caterpillar because it was a little warmer for him. Erika, aka "Tigger" stayed with Aunt Sharon to help give out candy and we headed over to my girlfriends to walk around with her & her kids. Austin was FULL of energy and ran from house to house. He was so excited. He pooped out after doing the first street, but collected himself and wanted to carry on. I actually got tired enough to call it a night and was anxious to get back to Erika. As it was, her cousin Dana took her out trick or treating while we were gone. She had alot of fun and was very pumped when we finally met up with her.
All in all, it was a fantastic day!!
Today's clinic visit went pretty smooth as well. After he was hooked up to his IV, he got his meds pretty quick and he had lots of fun with the volunteers today. He enjoyed a big visit with Papa Train today, as always, he had Austin smiling from ear to ear. He was also surprised with a visit from Michele & Lorraine which was very nice!! Thank you so much for thinking of Austin and taking the time to visit, it was good to see you both. I enjoyed your visit so much!! As suspected, when I got back from our coffee, Austin's head was buried in his bag! He was pretty surprised and loved all the treats!! He tracked down a volunteer to play Harry Potter Uno with him, and after they were done that - it was time to put tatoos all over. Austin's belly and arms are now covered with tatoos. His chemo was over before we knew it, so we had time to quickly visit Ashley who was still on the Ward. I was able to finally get my nails done as I had been promising Ashley since Monday night. She has opened her own nail salon, but I seemed to keep missing her operating hours. We still couldn't talk Austin into letting her do his nails!
When we got home, Nana was I think pleasantly surprised to see how energetic Austin was and got to spend some time with him while Erika was sleeping. They had a great game of "army" with Austin's new army men. I wish I had my video camera on them. Nana spent so much time setting up her army men so strategically only to have Austin send a rocket her way and wipe out her entire fleet with a swipe of his arm. I guess you had to be there, but it was pretty cute. I was able to meet a girlfriend for coffee in the afternoon while she stayed with the kids which was a nice break.
Tomorrow will be Austin's last day for this chemo. He will be getting this one on the Ward, so it will be alot more comfortable for him, although he doesn't seem to mind sitting in the clinic. I asked him this morning if he liked getting his chemo this way, or having sleepovers. He was pretty definite ... he said "THIS WAY". I'm happy it's working out for him!
I will let you know how the rest of his weekend goes, until then,
Take care.
Love Beth
CHECK OUT THE NEW PICTURES IN THE PHOTO ALBUM
Wednesday, October 30, 2002 at 04:19 PM (CST)
Hello everybody!
Surprisingly, this update is coming from home :-)
Austin was admitted to the hospital on Monday night to start his chemo on Tuesday morning. We loaded practically everything we own in the van and had ourselves set to spend a week (5 days) in the hospital. Monday night we arrived fairly late, so we didn't do much other than get Austin hooked up to his IV and say good-night. He was so tired - the nurse and I got caught up in a conversation before she hooked him up - and Austin struggling to stay awake, politely asked the nurse if she could please access him now. It was so cute, as I've never heard Austin use the word "access" before - usually he says "put his tubes in". Even though he was barely able to keep his eyes open, he was the perfect patient as she "accessed" him :-)
Tuesday morning we spent decorating his room for Hallowe'en. He had picked out a very cool door knocker (Frankenstein) who lit up and said "Happy Halloween" We hung bat streamers and a pumpkin, and Austin drew a few (scary) pictures for his door. We made bat signs that told everyone to "Knock before you enter" - "If you Dare!!" We also spent the morning scheming on what we were going to pull on some of the nurses on Halloween. Austin came up with a couple of good ones - he thought we could put a plastic skull in the toilet so that the cleaning lady would be freaked out when she went in the bathroom. We also imagined putting a big spider in his potty that measures his pee - with a paper towel covering it - so that when the nurse lifted the towel she would find a big surprise. It was fun imagining all the things we could do - even though I know we wouldn't have ended up doing them :-)
Tuesday morning's chemo was uneventful and Austin was feeling well into the afternoon. Shortly after rounds were done the head nurse came in and said we had the OK to go home. I didn't know what she was talking about at first, but boy did Austin perk up when he heard the "H" word. There was a bit of confusion with a conversation I had with Austin's nurse that morning. We were talking a little about doing the Irinotecan on an outpatient basis. Well she went into rounds and told the doctor that Austin's mom wanted to go home, and after discussing it they all agreed there was no reason to have Austin in the hospital for this particular chemo, as he doesn't need to be hydrated like other chemos he's had. I had told the nurse that this was just a thought and I didn't really mean like - today. I was thinking (maybe) the third round - so she apologized for getting Austin all excited and went to straighten it all out. Five minutes later the doctor came in without knowing I had just spoke to the nurse and said "Everything's all set then?" I told him that there was some miscommunication and I was a bit uneasy about taking Austin home during chemo. He assured me that HE felt comfortable and thought it was best for Austin to be at home with his family and also assured me that he was only a phone call away should something happen. There was no arguing with him - he had to pretty well push me out the door - but he truly feels Austin would be happier at home. I agree, but there are a few things that I do have concerns about. I guess the only way we'll know if outpatient chemo is "doable" for Austin is to try :-) so we packed his room up and here we are.
Austin got home last night and ran up and down the hallway with Erika (non-stop) for practically an hour. They were rolling all over each other - it was very cute. Amber & Aaron were happy to hear that there's a possibility of sleepovers being a thing of the past - so we'll see how it works out. Should Austin start to experience the diarrhea that is associated with Irinotecan, we will be admitted back to the hospital at once.
So for now, chemo will be done on an outpatient basis in the clinic x 5 days. We need to arrive no later than 9am to access him, administer ondansetron (anti-nausea drug) & do his chemo. This morning we were done and on our way home by 12:00. Austin is feeling good and things have been pretty normal around here so far ...
We will be back to clinic tomorrow and Friday, and will need to be admitted to the ward on Saturday to get his last dose of chemo. The doctor had mentioned if this works out well, they will try to coordinate his chemo for Mon-Fri.
If all goes well tomorrow, Austin will be going out with Erika, Amber & Aaron and we can ALL trick or treat together!!
Happy Hallowe'en & take care,
Love Beth
Monday, October 28, 2002 at 06:00 PM (CST)
Hello,
Yes, you can say no news IS good news. Life in the Davis house is dull, very dull ... not that we mind though :-) Austin continued with feeling great throughout all of his chemo down time, and is ready to go back for Round 2. He will be admitted to the hospital tonight and begin five days of chemo (Irinotecan) tomorrow. His blood counts were all in good ranges today. Platelets seemed to hold steady at 120, hopefully we'll see them go up a bit in the next couple of days before this chemo kicks in.
Although I'm happy that his bone marrow doesn't seem to be affected by this chemo (that is, his blood counts) - I'm certainly not thrilled that it is time to spend another week in the hospital. We had two weeks at home (which included four clinic visits), which doesn't feel like much of a break. Austin did the math pretty quick this morning when he was told he was going in for chemo. He quickly figured out that he will be spending Halloween night in the hospital. I usually know what to say to him to make it better, but this morning - I couldn't think of anything - truth is - it sucks!
What sucks more is that I can't be in two places at the same time, so either I will miss three of my kids Halloween night (Erika's FIRST time trick or treating), or I will have to leave Austin to be with them. Either way, it just won't be the same.
Well, I should go and get finished packing. Austin is busy running around filling up his suitcase. He is a pretty good packer - I usually have to just tidy up his suitcase after he's finished shoving everything in. He has the added chore of making sure his halloween costume is all together - he's got it all figured out!!
Just a quick note that Aaron hasn't been feeling the greatest. He must have come down with something, he had a fever yesterday and had been sick to his stomach. He's feeling a bit better tonight and will hopefully be going back to school tomorrow.
I'll try to update from the hospital if I can, until then,
Take care,
Love Beth
Tuesday, October 22, 2002
Today's clinic visit went well. Austin's counts were still great, WBC was 33.2 so we will discontinue the neupogen. Hopefully his counts won't drop too low. Hemoglobin rose to 120 and platelets fell to 125. We are scheduled to check his counts again next Monday to see whether or not he will be ready for his next round of chemo.
I had one of the oncologists look into a Phase I antibody study that is currently open in the States (hu14.18). She got back to me and unfortunately Austin is not eligible for it. There was an open spot a couple of weeks back, which could change at any time. The reason he was not eligible: he is responding to his current treatment. It is so frustrating sometimes, either he has too much disease or not enough disease, too many chemo treatments - not enough chemo treatments. Please dear God, help us find one that is just right for Austin!
Will update soon,
Love Beth
Monday, October 21, 2002
Hello,
Just an update to let you know that Austin is still feeling AOK and doesn't seem to be bothered by this last chemo the slightest. His counts on Friday morning were unbelievable for him on Day 11 - White count was 22 (normal 4.5 - 13.5). This high number is a result of the daily injections he gets to boost his white cells. Obviously the white cells weren't affected by the chemo, usually on Day 11, he is neutrapenic (<0.5). His platelets were 188 (normal 150-400), and hemoglobin 111 (normal 115-155). We'll check again tomorrow to see what they are doing, will be very interesting. At this rate, Austin will be ready for his next chemo on Day 21. Since his relapse he has never been ready for a chemo on time. Is this going to be another TOO GOOD to be TRUE thing??
So that's how things are going on the inside. On the outside, he's just as terrific!! He has had such good days. Thursday his teacher was here for the afternoon and they got lots of work done. Friday we hung around the hospital for the afternoon visiting and doing some running around. The weekend was busy with hockey and everyday stuff and today Austin is waiting for his teacher to arrive.
I was very saddened to learn that a very special girl to us had passed away Friday morning. She was diagnosed with cancer (at the age of 15) just after Austin was and both had relapsed around the same time. She was always inspiring as she always had such a positive attitude, as did her parents. I went to the funeral home last night to say goodbye. I wasn't able to bring myself to tell Austin or the other kids where I was going. It's such a hard call, but I'm still not ready to let Austin know that there are so many children he has come to know that are now in heaven. I will deal with the questions as they come. We will miss her and her family's presence at the hospital. She fought a good hard fight, it was time to rest. God Bless her and her family.
After Friday's clinic visit Austin threw some pretty good questions out at me. I thought maybe you'd all be wondering the same thing, so I'll repeat the conversation. Some of you might be reading Ashley's journal and are aware that she too has neuroblastoma and she has left this morning for Philadelpia for treatment. Austin had asked why Ashley was going to a far away hospital. I told him she was going to get special medicine to help take her cancer away. He told me that he wanted his cancer gone away too, so why can't he go? I told him that Ashley's cancer is very different from his cancer. He said "I thought we had the same kind of cancer". So I had to explain to him that although they both have a cancer called neuroblastoma, that their cancer is in different places. I explained that his was teeny weeny in his bone marrow and Ashley's cancer was in lumps. Well, Austin said "I had lumps in my belly too, so why can't I go?" I told him that the medicine doesn't work well when there's only a teeney weeney bit of cancer like he had, and alot better when there are lumps, and right now Ashley's cancer is getting bigger, and she needed help right away. He was OK with that explanation, hoping you all are too!! Bottom line, Austin is not eligible for the MIBG treatment.
We are praying that the treatment is successful for Ashley and can't wait for her to be safe and sound at home again!
I have to share with you another conversation that Austin & I had on the way to clinic Friday. He was telling me that he knows what he wants to wish for. He wants to go back to Give Kids the World (in Florida). I told him that we couldn't go back there to sleep but we could visit. He asked why? I told him you had to be invited and you can only go once. Fine, he said, we'll just pay to go then. I told him that you couldn't do that, and explained that they invite kids who are sick, or need to be in the hospital alot to go. He asked if I meant kids with diseases? Then in a loud voice from the back of the van - I hear "WELL, I HOPE I NEVER GET A BAD DISEASE" - I shook my head with a big smile, and thought ... only Austin :-) GOD LOVE HIM!! He quickly changed the subject.
Well, I'm off to tidy up and get Austin ready for his teacher. Will update again soon,
Love Beth
Thursday, October 17, 2002 at 03:08 PM (CDT)
Hello everybody,
Today is Austin's tenth day since his chemo and I am glad to report he feels absolutely wonderful ! Usually around the tenth / eleventh day you can predict that blood counts / general wellness will be at it's lowest. There are NO signs indicating either one, so hopefully he has managed to get through his first round of Irinotecan with flying colors! His counts on Tuesday were: Platelets (181) WOW!!!, Hemoglobin (105), WBC (9.9), Granulocytes (8.8). This is definitely a record for him on a Day 8 of chemo. Of course, it will be so much better when we know the Irinotecan can continue to keep his disease stable!
When I was asking the pharmacist about the side effects of Irinotecan, he said put it this way ... we all call it "I- RAN-TO-THE-CAN" (instead of IRINOTECAN). I was also talking to a parent of a child who was on Irinotecan, which makes three that I know of at our hospital ... ALL THREE went through a really tough time with the drug. Nasty nasty diarrhea. I can't believe, (alright, yes I can), that Austin seems to get through these things so well. He is totally amazing!!
Since I'm not sure where Austin's counts are since Tuesday, I have kept him home from school. The risk of picking up a cold or something isn't worth three days in the hospital. We'll keep him home until I know his counts have started climbing up again, as I'm sure they're no where near Tuesday's great numbers!
We had a very special visitor yesterday - Father Andy came to see Austin. He had some beautiful prayers that he shared with us. Austin also received the Sacrament of Annointing of the Sick. Last time Father Andy visitied with Austin, he couldn't perform the Sacrament because Austin was too young (6). Now that Austin is 7, he was able to receive it. Father Andy also shared with us his relick (sp?) of St. Andrew and prayed over Austin with it. He has a tiny bone that belongs to St. Andrew, and it is said that prayers will be heard should you be prayed for in this way. We were also encouraged to pray to Padre Pio, for he too is a powerful Saint who could help Austin.
Clinic tomorrow, will update soon.
Love Beth
Monday, October 14, 2002 at 11:50 AM (CDT)
Hello again,
The kids are all busy doing their thing, so I thought it was a good time to fill in some missing pieces to Austin's journal.
First off, Austin is feeling great. As I write this he is busy playing with Marky & Michael out in the yard. They're chasing each other around playing their version of cops and robbers I guess. Austin is armed with a gun (a hockey stick) and protective gear (hockey goalie pads & elbow pads). He doesn't seem fizzed by this chemo as of yet. When he got home on Saturday, he was anxious to come with us to Aaron's hockey game. Five hours after his last chemo was administered, he was running around the arena with all the other kids looking VERY normal :-) Before we left, he and Aaron were busy out on the dirt bike, jumping off a home made ramp. We put a stop to that, so now Aaron & Amber can jump solo as Austin watches on the sidelines. It's so hard to draw the line for him as it's hard for him to understand why he just can't do things like everyone else.
Backing up a bit, before we had to go in for Austin's hospital stay we were able to enjoy a weekend together, as you might remember we were supposed to go in on Saturday night - but it got postponed. This worked out well, we were able to spend Sunday with Grampie and Bonnie. We met them in St. Catharines and had an interesting visit to the Welland Canal museum (I'm not sure what it's really called). We were lucky enough to get to watch them lower a boat in the locks and learn a bit about how they do it and what it involves. We were really hoping to watch a ship, but it was just as cool watching a smaller boat. Do you know they have to drain two million gallons of water to lower a boat? This particular boat had to go through eight locks as it was travelling from Lake Erie to Lake Ontario. It took about 1/2 hour to lower the lock, and another 1/2 hour to fill it back up. After we were finished there, we drove to Lake Gibson and walked around for a while. Erika was sleeping in the van, so I stayed behind. I'm not really sure about the details of their adventure, but it sounded like they had lots of fun down by the lake! We ended our day out for dinner at an Italian restaurant - it was really good. Homemade pasta, and lots & lots of it!!! The kids had a good time - the only drawback was having to say "NO" to Austin on several occasions as the other kids munched on snacks all day while he's not able to. At dinner, he would have went crazy eating buns, I know it, but I had to limit him to one bun. Even with limiting his snacks, having one bun and having a bit of pasta, his blood glucose was 22. It just drives us nuts - sometimes I wish he was diabetic so that he would be regulated with insulin and able to enjoy his food. He's so good about it all though - after dinner the waitress came over with a big bowl of life saver suckers. After waving them in the kids faces, she had enough sense to ask if they could all have one. I told her everybody but him, as I pointed to Austin. He just smiled, and said it was OK if the other kids had one. She even made it more heartbreaking to watch as she offered him one and told him he could give it to one of his friends. He obliged without seeming tempted to eat the sucker she just gave him, and without hesitating walked over to Grampie and gave him the sucker. This scenario happens quite often, and I am very proud of the way Austin handles himself in those situations.
Monday morning we had a clinic appointment, which ended up being a BIG wait to be told to come in that night for chemo - I'm sure a telephone call would have been just as informative. Oh well, we were able to finish our grocery shop to prepare for the hospital stay. Aaron had his first hockey game - I was very happy to be able to make that before we had to leave for the week. He played absolutely fantastic. He put his heart into playing and what a wonderful job he did!!! It looks like he will be playing "center", so I'm sure he'll be happy about that. He scored a goal but it didn't count as the kid who passed him the puck used his hand. Aaron said that the puck touched his stick before he passed it, and the goal should have counted. Oh well, he played again on Thursday and scored another goal - this time it counted :-) I was crushed that I had to miss him play - I'm sure I'll miss quite a few games over the season. We came home just in time on Saturday to make it to his next game. He decided to play goalie as their regular goalie couldn't be there. Four kids wanted to do it, so they picked a number and Aaron won. He played a good game, they won 5-2. After three games, they are 3/3. Big difference from last year where I think they might have won three games the whole season!
Well, I probably could go on and on .... but I will go for now. Aaron wants to use the phone and keeps telling me I'm on the internet "too much". I will let you know how clinic goes tomorrow,
Take care,
Love Beth
Sunday, October 13, 2002 at 10:57 AM (CDT)
We're home, and I'm glad to report that I don't have much in the way of medical issues for Austin. The five day chemo went very smooth, Austin felt and looked good the whole week. Time will tell if Irinotecan affects Austin the way it has for other children, i.e. nasty diarrhea, but so far so good. It seemed that everyone was waiting for him to explode at the hospital and it just didn't happen. Since we've been home he has started to have loose stool, so he took some Immodium last night. He has been fine today so far ....
His blood counts are all in good ranges, his platelets were actually up over 200 at last check. Good stuff! His blood pressure was all over the place all week and once again baffled everybody. On admission Monday night it was on the high side and didn't really go down much of Tuesday. The doctor ordered him Nefedipine to lower it, and it did just that. An hour later, he was having normal blood pressures and continued until Wednesday sometime. The second bout was lasting a bit long as well, 150's / 110's, but we waited a bit to see if it came down before giving him the med. Good thing we did, because through the night he was down to 80's / 40's. This happened again yesterday. The nephrologist still doesn't seem too concerned ... the nurses sure do though!
All of this is very minor compared to what a few of the kids are going through on the ward. Ashley's parents found out last week that her disease is progressing rapidly. She needs our prayers more than ever as she waits for treatment in Philadelphia. She is such a sweetheart, when we were leaving and I asked her if there was something I could bring her on Tuesday when we come back to clinic, she softly said "could you bring Erika?" You bet I will - my prayers and thoughts are with you Tricia. I have added Ashley's website to the bottom of Austin's page, please pray for her as she needs it most right now!
I have also added a link to a smilequilt that was made for Austin. Check it out!!! It is so very cool, I put it up for Austin this morning and his face lit up. He was smiles all over! He couldn't figure out why Pokemon music was coming from the computer - he thought it was impossible.
One last note, Rebecca is doing miracuously well :-) After being told her heart was only functioning at 5% and in need of a heart transplant within the next month, she has now been taken off the priority list for transplant, transferred back to McMaster and now has over 50% of her heart function. She looked so wonderful :-) Truly a miracle! Please keep Rebecca in your prayers along with Ashley and Austin.
Will update soon,
Take care & God Bless
Beth
Saturday, October 05, 2002 at 11:50 PM (CDT)
Hello everybody,
Well our plans have been changed and Austin won't be going in for chemo tonight. We will be going to clinic on Monday to get things sorted out before we can begin this new drug. Hopefully he will be admitted on Monday night.
This gives me the time to finish my journal entry from yesterday :-)
The meeting with the oncologist on Thursday was good. This certain oncologist has a way of giving you hope when you need to hear it the most! He most always starts off his conversation by acknowledging the fact that Austin is just amazing. He truly believes it is "unbelievable" how well Austin continues to respond to therapy as well as maintain a healthy mind and body. A few times he commented that he certainly is "textbook". As if he's been trying to place a finger on why Austin seems to do so well, he can only come up with his best guesses. He continues to mystify all of them (in a good way of course!)
So as I told you, the bone scan & MIBG were both negative. The CT Scan and the ultrasound show no change. Both were consistent to previous scans, both showing the residual mass near the vena cava that has appeared as far back as Oct. 99 with no signs of change. The doctor feels enough time has passed that we can SAFELY say that this is dead tissue. Although I have suspected this all along, it felt good to hear him say it out
loud. Here's where everyone must knock on wood ...
The bone marrow of course has come back positive once again, showing both sides to have approximately 1% neuroblastoma cells. From what I understand, there was evidence to suggest that some of these cells were matured. We didn't really get on to the subject, so I don't really know what that implies. He did comment that because there were signs of cells maturing, the biology of the tumor must be changing. Something like that ... I didn't really get it.
So from there we discussed in some detail the various trials that are available and strategies pertaining to Austin. In his mind, although Austin's condition is very serious, he also believes we're not in a such a desperate condition that we need to run out to try every Phase I trial that becomes available. He spoke alot about studies and the way they are conducted, and assured me that when they believe the "right" treatment comes up for Austin - we'll be there in a split second. For now, there are alot of studies that are in the beginning stages and have yet to be proven efficable. Until they do, he believes we should continue to be patient. I explained to him as a parent it is so very hard to continue to do "nothing" (although we are doing "something"), especially when I read about so many
other children (in the US) who are flocking to these treatments. He bluntly asked if I knew the outcomes? Do they have statistics?, etc. I expressed my concern that they wouldn't have these statistics in Austin's life time, so taking a chance seems to make sense. He explained that what we are waiting for is a trump card, but we have to know when to use it. By waiting cautiously and patiently, he believes that the right treatment for Austin
is right around the corner (I would say at least a year) and we need to focus on keeping his disease minimal and maintaining his health as best we can. That would be so easy if we weren’t talking about neuroblastoma. There is talk of a Phase II study opening in the next year / year & a half using t-cell therapy. This would be very promising and Austin would likely be a good candidate.
Anyway, there was so much that we discussed, it was starting to go in one ear and out the other. Too much for me to absorb in one sitting ...
On to what to do now?? It was agreed that we have to continue what is working, so we arranged to have Austin go in on Sat. night for another round of Topotecan / Cyclophosphamide. After discussing this among other things, a half hour might have went by, when he voiced his concern about the excessive use of Cyclophosphamide Austin has seen. I wondered if his concerns were from the more common side effect that would cause damage to the bladder, but he wasn’t. He was more concerned with the rarer side effect of cyclophosphamide being leukemic. There is a slight risk that some chemo drugs can cause leukemia down the road (7 to 10 years). Could you imagine????? His risks are already higher, he received a high dose in transplant, along with 17 rounds of low dose. His original protocol only called for one cycle plus a transplant. I believe they design these protocols with these things in mind, so the thought of Austin having an increased risk (x18) was enough to listen to his alternate plan, being the drug irinotecan.
Irinotecan was discussed in July when Austin started back with the chemo. The most common side effect is severe diarrhea. I have witnessed two kids at our hospital go through this regimen and it was nasty. He had to remind me that we were talking about Austin here, so it is possible that he may very well tolerate it. There are benefits to using it rather than the topo/cyclo, the biggest is that it has less toxicity to the bone marrow.
Not that Austin has ever had problems with neutrapenia, but it is a positive difference! I’m not sure if that means his platelets wouldn’t be chewed up as much, we’ll have to see. As he was pitching the new idea, he could see that my expression had now turned to fear. He chuckled and asked what was the matter? I told him the thought of using a new drug was very scary and the last thing I want to do is make Austin sick. I asked him why he
was laughing, and he gently reminded me that this time last year we were prepared to give Austin a myleoablative (transplant) dose of irinotecan. (In preparation for the antibodies in NY). He got me there, so I agreed to give it a try ... if he tolerates it well, we’ve found ourselves a new tool. Some kids have been on this protocol for quite some time to maintain stable disease. If he doesn’t tolerate it, we will switch back to the topo/cyclo. It
is also comforting to know that this was the drug of choice with the doctors who were consulted in July about which chemo to use, as well as the doctor in NY suggesting it last spring.
So with our fingers crossed and prayers on their way ... we are hoping that Austin can do his stuff and tolerate this without problems. In the mean time, the doctor has assured me that they are always on the lookout for Austin and want nothing more than to come to us and say they’ve found what we’ve been waiting for. I believe in my heart that day will come ...
That leads to the phone call that I received Friday afternoon, asking that we wait until Monday to come in to clinic. There is a Phase II study using Irinotecan, and they are making the necessary arrangements to have Austin enrolled. Hopefully he is eligible as it would not only benefit Austin (being carefully followed through a study), it would provide useful information that might benefit other children in the future.
That’s the scoop in a nutshell. Austin was disappointed not to be going into the hospital tonight because his school teacher had given him a load of work to bring with him and he was worried he wouldn’t get it done. I promised him he would still get to his work so he was okay with the idea.
To make this entry even longer, I might as well fill you in on our everyday stuff. Austin did manage to make it to school on Friday for picture day. Hopefully he wasn’t for real when he showed me what kind of face he made for the camera - I can’t wait to see if he did :-)
This afternoon, we were honored to be a part of Austin’s primary oncologist’s retirement party, given by Help a Child Smile. Dr. Pai has played a huge role in Austin’s treatment and we will miss him sorely. You could always count on him to be sincere, compassionate and very professional. He once told me that in his thirty years of experience in oncology, Austin has been his toughest case. He has never had so many splits in the path, so many times, with so many difficult decisions. I believe that Austin’s good health has played a big part in the challenge.
Ashley is home from Toronto and everything went well, as expected. My thoughts are with you guys, as always!!
Rebecca is still in ICU in Toronto and in need of a heart transplant. Last I heard, she was taken off the machines and holding her own. They were told that the initial damage done to her heart was caused by a chemo drug that she had received. The rest of the damage was caused when she arrested. The really sad part in all of this was Rebecca had just finished all of her treatment this summer and has been in remission for some time. Please continue to hold her in your prayers as I do.
Well, that’s about all for tonight ... we’ll let you know how the week goes. I hope to get on the computer while Austin is in the hospital classroom.
Take care,
Love Beth
Friday, October 04, 2002 at 11:11 AM (CDT)
Hello everybody,
I have much to tell you about the discussion with Austin's oncologist, but don't have the time to get into detail right now. Hopefully I'll get a chance later on today, for now I wanted to let you know the results and the bottom line ...
All scans, etc. were normal / unchanged. His bone marrow biopsy shows 1% neuroblastoma on both sides. This is basically the same as July's 5% result ... they both indicate stable minimal disease.
We are being admitted tomorrow night to start five days of chemo. We are switching to a new drug, Ironitecan - I will fill you in later on why we decided to switch and the possible side effects.
Sorry to be so brief, I will update soon. I am off to get organized for our hosp. stay, and only have a few hours to run around before the kids get home. :-)
Love Beth
PS - If it counted at all - Austin is three years post bone marrow transplant today.
Wednesday, October 02, 2002 at 03:25 PM (CDT)
Hello,
Well we've made it to Wednesday and are still somewhat sane. Tomorrow we will get the results of Austin's bone marrow biopsy. Without knowing at all what to expect, I am going into our meeting blind. There are three scenarios, each one holds it's own for making difficult decisions. I will let you all know how it goes as soon as I can.
Although Austin has been feeling really good this past week, I find myself in a world far away from here. Two little girls are on my mind and I can't seem to function for thinking of them. Ashley is in Toronto this week being reharvested for stem cells. If the collection is successful, she is very close to being able to try an experimental therapy in the US. My prayers are with her and her family always. Then there's Rebecca, a little girl from the clinic who I've met through Tricia. She had complications minutes after her surgery started on Thursday, and last I heard was on full life support in Toronto and in need of a heart transplant. Please keep them & their families in your prayers with me.
Further from my thoughts, but very close to my heart ... three children from Mac have passed away in the last couple of weeks. Please say a prayer for all of these children, and for our doctors, nurses and support staff who are very affected but need to keep it professional. My heart goes out to them as they are faced to deal with their grief silently.
Now that I've bummed YOU all out, I'll get to Austin's update ...
Austin had a good weekend. We started off with a Blue Jays game on Saturday courtesy of Help A Child Smile. They played Detroit and smoked them 10-2. It was a good game to watch, the kids had fun. This was Amber's first trip to the skydome, I think she was very impressed!! Aaron had his friend Dillon come along, so they both had fun together.
Sunday was a quiet day at home with Dillon here. Amber went for a visit to Nicole's and Aaron had another hockey practice. The teams have been picked and regular practices start next Saturday. Aaron looked like he hasn't missed a beat over the summer, his skating is awesome!!
Monday Austin was able to go to school. Tuesday his home teacher came for a visit, and again this afternoon. IT worked out well since Austin needed to stay home to do a 24 hour urine collection anyway. He is doing such a fantastic job with his work. This morning he read me "Go Dog Go", with little help. He was very excited to show his teacher that he read a book from home. There is a big pile of books in the hallway that he brought up this morning ... I think he's getting the bug!!! Hopefully he will be able to make it to school on Friday, as it's picture day! We'll know tomorrow.
That's about it around here. Check back for an update soon,
Love Beth
Friday, September 27, 2002 at 06:16 PM (CDT)
Hello,
We're so glad that this week has come to an end and are ready to enjoy a much needed break from the hospital and everything that goes along with it.
Austin's scans are finished, except for the U/S which we showed up a day late for, OOPS. This is rescheduled for next Thursday along with our clinic appointment to discuss the results of the bone marrow biopsy.
Wednesday's MIBG scan went smooth, but the doctor asked that Austin come back for a second look on Thursday. He was seeing something in the intestinal area that he wanted to be sure was nothing. The isotope they use for the scan is taken up some by the organs, bladder, bowels, etc. This is all normal, but for some reason he felt there was a little more than usual in this area. He was playing more on the cautious side by repeating the scan. Fine by us, we had an U/S Thursday morning anyway.
Wednesday afternoon, Austin had his new home school teacher come for a visit. They spent a couple of hours together and seemed to hit it off rather nicely. Although Austin is eligible for five hours a week, this teacher has forewarned me that she would only be able to pull off 2 1/2 hours a week. I'll take it for now, but I will let them know that we want the full time awarded to Austin, as five hours is not enough in the first place. Austin is doing so good considering the amount of time he has actually spent on his "formal" education. They spent time going over the dolch words for grade one, reading a story - that Austin has already mastered and is ready for the next one, practicing his printing, and some math work - patterns.
If the day didn't poop him out already, he had his friend Christian over for a visit later in the afternoon and the two of them played heavy duty until bedtime. It was a pretty good day!
Thursday morning we were up bright & early to make it in for a 9:00 U/S, which wasn't even booked. There was a bit of confusion and the scan was actually booked for the Wednesday morning. My app't cards said Thurs. morning. No big deal - we will have it done next week. The MIBG was pretty quick seeing as they only had to redo the abdomen section instead of the whole body. From what I gathered (from the other side of the room) was that the doctor was still a bit concerned with the uptake around the colon / intestines and wanted to compare it with the most recent CT Scan (which was done on Monday). Needless to say this was making me a bit nervous, but thank goodness I received the report on the CT Scan from the clinic nurse that says everything remains unchanged.
So far then, the CT Scan is normal and the bone marrow aspirate (right side only) has come back negative. The left aspirate wasn't adequate for a diagnosis. The doctor had told me she didn't think she got a good sample, hopefully though the biopsy was good enough for them to test.
We are still waiting for the MIBG report, bone scan results and our U/S to be done. A 24 hour urine also needs to be done next week. For now - we wait for Thursday.
This gives us a little bit of a break, so Austin was able to go to school today. He seems to be feeling AOK, a bit tired, but then again - so are Aaron & Amber. The weekend should fix that up!! Aaron had his first hockey practice this afternoon, he was very excited to get on the ice again. It was good to see all the kids running around the arena, they all look like they've missed it!! After hockey we treated ourselves to a pizza, and now the kids are busy playing around the house. We brought the pizza kid home with us, so they are pumped.
Have a good weekend!
Love Beth
Tuesday, September 24, 2002 at 02:14 PM (CDT)
Hello,
Today is Tuesday here :-), and yes, we are home from having Austin's bone marrow biopsy done. As always, Austin was a trooper through it all.
His counts are all relatively the same as yesterdays, so the doctor has agreed to lay off the neupogen injections a bit and do them every other day. We'll see if his platelets are ready to come up on their own or not. I can't believe it is day 20 and we are already coming off the neupogen. Good stuff!
Austin's bone marrow went well. It took a bit longer than usual, Dr. Portwine had some trouble getting a good sample from one side. She, as well as his other oncologists, says with each one it gets a bit harder - and since he's had 27 (roughly) bone marrows done, I guess Austin is giving them a run for their money :-)
Our day is going well, Austin is in alot better spirits than he has been - I'm wondering if he was worried about this procedure even though he said he was looking forward to it. He is definitely old enough to understand that after each bone marrow comes results - just a thought. His back seems fine, I'm hoping he gets through the night without pain.
We came home to an empty house :-(, Nana & Erika are off to an appointment. It feels VERY strange not having them greet us at the door. Thank you Nana for all you do for us, we love you very much!!!!!!!
Will let you know how tomorrow's MIBG goes,
take care,
Beth
Monday, September 23, 2002 at 01:54 PM (CDT)
Austin managed to get through his morning, just barely - one day down, three to go.
First off was a bone scan injection which he needed his port accessed. He was already in a quiet mood (as he has been most of the week for some reason), but he really had a hard time with the IV nurse that was accessing him. She hadn't done Austin before that I can think of, so she wasn't comfortable with some of the habits that Austin has picked up over the years. For one, he likes to get his hands as near to the access point as he can to hold the tubes going in. He knows not to touch the area that has been cleaned, as it is very important to keep everything in a sterile environment. She didn't like his hand there and actually repeated the cleaning part of it twice, which was not necessary, and a bother to Austin. He wasn't pleased. She kind of put the dressing on awkward and later blamed Austin for getting his hands in the way. I wasn't impressed, and it left Austin very quiet for the rest of the day.
After his injection, he had his CT Scan, which went very smooth and returned back to Nuclear Medicine for his bone scan. He was pretty tired from the benedryl that is necessary before getting the CT contrast, so he managed to slip in some quick cat naps - anywhere he could find a spot to put his head down.
We had his counts checked as well, his white count is 18 - which is about a week ahead of his schedule, It would be wonderful if this were some sort of sign or something - not likely though. His pottasium was 5.5, so he can stop taking the supplements, which by the way - he has done an AMAZING job at swallowing all week!!! Hemoglobin has come up from Friday to 117, and platelets are hanging in at 33.
Tomorrow is the bone marrow aspirate / biopsy. Austin is looking VERY forward to his sleepy medicine. His doctor told him he was weird the other day - I guess not too many kids get excited about having their bone marrow done - I wonder why??? Only Austin :-)))
Will let you know how it goes,
Take care,
Beth
Friday, September 20, 2002 at 09:08 PM (CDT)
Hello,
Austin is feeling much better, not 100% - but better. His cough is still there and he has been more tired than usual. Of course he still manages to carry on with his day in his usual "Austin" fashion!!
He managed to go to school yesterday even though he wasn't sure it was a good idea. He was a bit nervous that the other kids might catch his cough. He talked himself into going and asked if I'd come and get him if he was uncomfortable through the day. He made it the whole day and reported that his school day was "boring". When I asked him what he would have done if he stayed home, he said that he could've been hugging Erika all day :-)
Clinic this morning found his counts in good ranges. His white count was higher than usual for this time, might be because he is fighting off a virus. Hemoglobin was 108, and platelets 32. His chest was clear and the doctor had mentioned that Austin was one of many who she has seen this week with a cough.
We got results from blood work done a couple of weeks ago that the endocrinologist had ordered to follow up tests done in June. From what I understand, he is still in the normal ranges for the average blood sugars in a 24 hour period, and his C-peptide level is higher (207) than it was in June (93), which means he is producing more insulin than he was, although it is still below normal ranges (364 - 1655). I haven't discussed the results with the doctor yet, but she had said she would call me if she had concerns, which she must not.
I have been trying desperately to figure out what is going on inside Austin's little body so that somebody can do something to help him. My brain is on overload - there is so much to absorb. When I did a search for neuroblastoma & glucose together - I was overwhelmed on how many websites came up. I am still trying to go through them and wanting so bad to find answers. I am still always on the lookout for any new or ongoing studies or trials using antibody / vaccine therapies for recurrent neuroblastoma, but nothing is out there. It is so discouraging, but with prayers I know that something just right is going to come for Austin!!
I will update soon,
Love Beth
Wednesday, September 18, 2002 at 08:19 AM (CDT)
Hello everybody,
We were totally knocked off guard on Saturday afternoon when Austin started to develop a temperature. It began with a bad headache and a low grade temp. He still felt okay, although he walked around with a cold face cloth on his head for a while. (He actually managed to play baseball like that). Later in the evening the headache went away, but the temperature kept steady at 38.1. Through the night he started to cough like a seal. He said his throat hurt when he swallowed, but would try hard not to think about it.
When we woke up Sunday morning, his temperature was 37.9, but he was pretty tired looking. He went back to sleep and woke up around noon with a temp of 39. His cough sounded alot better. He was admitted in the afternoon since he was at his low point with his counts. We weren't really sure whether or not he was neutrapenic , but knew if not he would be by Monday.
Austin sure did keep the nurses on their toes. His blood pressure continues to stump everyone and was actually too low on Sunday. They needed to give him two fluid boluses to get it back up, although I found out the next day that might not have been necessary. Because Austin has had such high blood pressures on the ward the last couple of times, they thought a somewhat normal reading was too low for Austin, but it really isn't considering he has been all over the place. At one point on Sunday he was 85/44, which is pretty low - so the extra fluids probably didn't hurt. They think he might have been a little dehydrated. His potassium was also low, so that was added to his IV and was in the normal ranges on Monday. His hemoglobin was 75 when we went in on Sunday, so he needed a red blood transfusion. The first one he has needed since January. They had trouble finding him a match, so he didn't actually receive the blood until 2am that night. Needless to say, he needed to be topped up and tuned up!
He spent most of Sunday sleeping or watching TV. He was pretty quiet. He felt much better on Monday when he woke up and we had a busy day doing crafts and playing. His last recorded fever was at noon, so the doctor had told us we would be okay to go home 48 hours from the last temp, as long as the cultures were all negative. He did need platelets on Monday as they were down to 20. Since he had high temperatures, they transfused. Normally they wait until they're under 10.
He had a good night and woke up Tuesday feeling fine. He had lots of fun with the volunteer, and enjoyed having his teacher in both days. We were busy with a craft when the nurse told us she had good news. The doctor said we could go home. We weren't expecting this at all, so we were pleasantly surprised. Austin was excited, although both of us felt like we weren't quite done playing all that we set out to do. Oh well, we'll get around to it next time we're there! We got home last night and everything's back to normal. Austin's counts are above being neutrapenic and I almost felt like sending him to school today, but I think we'll give it a day at least :-)
He needs to take pottasium this week to keep his levels in the normal range. This is something new for him. Ashley has been taking it for a while and from what they've said, it tastes absolutely horrible. Ashley is doing a great job taking it, but I KNOW Austin wouldn't be so brave about it. HE HATES liquid meds. So the pharmacist gave him a choice, the liquid or some pills. Of course he chose the pills, and our BIG BOY came home and swallowed two last night. He did such a good job!!
That's about it. We have clinic on Friday, hopefully I get a chance to discuss our game plan with the doctor. I have been patiently waiting to do this for a couple of weeks now. Austin's scans / bone marrow tests are all booked for next week. Please keep us in your prayers.
Take care,
Beth
Friday, September 13, 2002 at 11:28 PM (CDT)
Just a quick update to let you know that Austin is doing well since he has been home from the hospital. He managed to make it to school on Wednesday. I popped in on him at lunch hour to see if he had enough, but he was having a good day and wanted to stay. He looked great and was feeling just as good. He worked hard the night before to catch up on the school work he has missed, so I'm glad he was able to hand it all in the next day!
The home school teacher called Wednesday night to let me know that she didn't think things would work out. I don't think she realized that Austin's schedule isn't so predictable and she would have a hard time working around that. Our principal is now on the look out for someone a little more flexible with their hours to better suit Austin's needs - maybe a retired teacher? I hope he finds someone soon, I could see how much Austin was accomplishing with having just three consecutive days. We're disappointed, but we know that it will all work out.
Today's clinic visit was one of the quickest yet ... not ten minutes and we were given the go ahead to head back home. Austin's counts were well above the transfusion marks so we were all clear. We actually ended up in the clinic for well over an hour because Austin was not ready to leave, he had immersed himself in a Game Boy game. He even told me to go for a coffee or something so he could stay. As much as I wanted to go home, it was kind of funny to see him so comfortable in "his" clinic, so much so that he'd rather stay than go home. It was a good distraction for the nurses today as they've had a pretty rough week.
We finally made it home after a quick stop to Walmart so Austin could use his birthday money. Bet you can guess what he beelined for? You got it - 2 game boy games - what else?? That's our Austin!!
Have a good weekend,
Love Beth
Tuesday, September 10, 2002 at 10:02 AM (CDT)
Hello everybody,
It's been so long since I've last updated, I'll try my best to get you all caught up on what's been happening in Austin world!
The last weekend in August was certainly busy as we tried to fit a little of everything in. The kids and I enjoyed a day at the Smithville Fair doing the rides and all that fall fair stuff. Erika experienced her first carnival ride braving the kiddie roller coaster which was more nerve wracking for me to watch. She looked a bit spooked at first, but after a few rounds seemed to be having fun. Austin of course had a great time, he actually braved the salt & pepper shaker. He needed an adult to go on with him and there was NOOO way I was going on, so we recruited Aaron's hockey coach from last year that just happened to be sitting in the right place at the right time. Half way through the ride, Clayton told me that Austin said he was definitely not going on this ride again. After turning three shades of white when the ride was in full force, he managed to find his smile once the ride slowed down a bit. Amber found a teenager friend to go on with her and she absolutely loved it :-)
Saturday Glen & I braved the mall, and finished off some school shopping with the kids ... after turning three shades of white once the shop was in full force, we managed to get through it and vowed not to ever do THAT again :-)
We spent Saturday evening in Welland at the annual Help a Child Smile fundraiser. I can never say enough about what a wonderful organization they are. It is totally uplifting to see so many people coming together for such an absolutely extraordinary cause. What a gift they are to families like ours who face such difficult times!
After waiting an entire summer, the kids finally got to go to the Demolition Derby at the Smithville Fair. Besides being pelted with mud balls, we had a blast. Austin & Aaron just love watching the action.
We spent most of Monday getting ready for school, the kids were excited to be going back. Austin was able to make it to his first day and from the sounds of it had a good one! Aaron & Amber both seem happy with their teachers and have already come home swamped with homework. Here we go again ....
Wednesday was clinic day, Austin's counts were all good which meant he was okay to begin another round of chemo. He was admitted Wednesday night for five days of chemo beginning on Thursday. The week went without incident, he feels incredibly well. What made for a better week was that Ashley was in for her chemo at the same time, it certainly made the week go by faster. Austin also had a five year old boy in his room who didn't stop! Talk, talk, talk - which I guess made for a more interesting week. The two of them spent ALOT of time playing Nintendo and watching Pokemon - what more could two little boys be wanting to do?
Saturday, I was able to take Amber & Erika to the African Lion Safari while Nana stayed with Austin. For the first time it was just the "girls", which felt a bit strange, but nice. Erika loved all the animals, especially the monkeys .. but seemed more concerned about all the poop that was everywhere. Amber enjoyed her day with Mom and I was glad we were able to go. Once again, thanks to Help a Child Smile.
Monday morning, Austin went to the school room at the hospital for about an hour. It seems they accomplished quite a bit in just a short time, in fact, when I went to pick Austin up ... he had a big surprise for me. He read me a story, like - a REAL story. I had tears rolling down my face, luckily he was so absorbed in the book he didn't notice. I can't begin to tell you how proud I was of him and what it meant to me to hear him reading. Oh boy!
We made it home last night, and it's good to be here. We didn't get to spend much time catching up with Aaron & Amber, so we're looking forward to them coming home from school tonight.
Austin's home school teacher, Mrs. Weber came for a visit this morning. She spent about an hour with Austin and it seems like things will work out well. It might get tricky trying to arrange times & everything, but hopefully it will work out. Austin is eligible for five hours a week - so we'll have to see what works best.
I think that's about it. Caringbridge has changed IP servers so if you are having problems getting to Austin's site, try using www.caringbridge.org/page/austin.d
Will update soon,
Love Beth
Thursday, August 29, 2002 at 07:53 PM (CDT)
As I suspected, Austin's platelets were 49 today - not enough to start the next round of chemo. We will check again on Wednesday and if they are 100+, he will be admitted that night. So that gives us time to enjoy the last long weekend of summer :-)
Amber tagged along to our clinic visit today and the kids had fun hanging out with Ashley. She is such a doll - actually Amber wants to go live with them now that she's been to their house for a visit (on Tues) and got a chance to swim in their way cool pool ! They had fun doing crafts, playing games & watching a movie. Somehow Amber's got the notion that clinic days are all fun & games :-) She obviously doesn't realize that these kids are made of steel and wouldn't want to make it look anything less than easy for an outsider ;>)
After clinic, we stopped by the school to follow up with the necessary paperwork for Austin's home schooling. We have requested it to be in place on September 10, the first day back home from chemo. Everything has been approved by the Board so we're all set to go. Hopefully they find a teacher by then.
The kids have spent the rest of the day on the computer. If you don't hear from me in a while, it's because they've TAKEN over my computer. Their cousin and his girlfriend came over last night and replaced our CD-Rom, which hasn't worked for years. They finally can play games - maybe a little Reader Rabbit won't hurt either? I'm anxious to get Erika started as well, she'll love it.
Blood pressure x 2 was normal today.
Well, that's about it, hope everyone has a great - safe - long weekend!! ENJOY,
Love Beth
Wednesday, August 28, 2002 at 04:30 PM (CDT)
Hello everybody,
Well our little man enjoyed his birthday party so much! He was so happy to have his family and friends together and had a great day. He is having fun with all of his presents and seems so grown up now that he is seven :-)
I had asked Austin if he could have a wish for his birthday, what would it be? He didn't think about it too long and said he would like to fly in a helicopter. Well, that seemed like an easy enough wish to fulfill - so Glen and I had intentions of taking him on Sunday. After thinking about it though, we decided we will wait until his platelets are a little higher before such an adventure. Instead we took the boys go-carting (Amber was out for the day visiting her grandfather in NY) and stopped by the Hamilton Airport to watch some planes take off and land. We found out that they do tours (to the Falls & back) at pretty reasonable prices in little itty bitty planes. Hopefully we can time it right and the boys can do that. They seemed pretty excited about it.
Monday's clinic visit went well, Austin's platelets are on the way up (39). We met with the doctor to discuss some headaches Austin has been having and once again had the conversation about high blood pressure. She has asked that his blood pressure gets checked twice every clinic visit and will keep her eye on it. When they did check it was high (150/103), but came down an hour later (120/85). How many times have we had this conversation????? It seems because we switch oncologists each month (there's five of them), we repeat this same old thing over and over. Do they not get it that something's not right? No one can guess what's happening and you can't treat something you don't understand ... so AGAIN - we will keep our eye on it. It's so frustrating not knowing what is causing these problems. Her best guess (as well as everyone else's), is that the elevated catecholomines are the cause.
We have clinic again tomorrow to check on counts. We skipped yesterday's neupogen injection in hopes that his platelets have a chance to come up without affecting his white count too much. The clinic nurse has booked Austin in for chemo tomorrow night, but I have a strong hunch that his platelets won't be high enough. Tomorrow is Day 27, compared to previous rounds - his platelets hit 100 after Day 32. We'll see, I'd be totally shocked and totally unprepared if they tell me he can go in tomorrow.
I had a chance to speak to Austin's prinicipal on Monday and have requested that he has home instruction this year. They will start the necessary paperwork and hopefully we can get it in place soon. The superintendent happened to be there when I called, so they discussed Austin and have come to this: Austin will be placed in Grade One again, with the same teacher he had last year. NOT because he isn't up to Grade 2 speed, they just felt that Miss Franko would be a good advocate for Austin when dealing with the home instructor, since she knows his strengths and weaknesses. Austin has never met the Grade 2 teacher, and they felt this was more important than putting him into a class with his buddies. They will reassess the situation in December and happily place Austin in Grade Two when he is ready. (I would guess that means when he learns how to read).
So if we don't end up in hospital tomorrow night (which I doubt), Austin will be able to attend the first day of school. I have scheduled his next clinic visit for Wednesday & admission for that night. I think it's important for him to be there on the first day at least :-)
Will let you know how his counts are tomorrow,
Take care,
Love Beth
Saturday, August 24, 2002 at 12:01 AM
Friday, August 23, 2002 at 10:30 AM (CDT)
Hello everybody,
This week has been definitely less hectic than last. We've been enjoying a quiet week around the house. Both Monday's and Thursday's clinic visits were quick in and outs. Austin's counts all remained good, platelets are hanging in there at 22. Hopefully he gets through the weekend without having to make a trip to the emergency room.
Austin is once again our little bald boy. He is handling the change well, but it takes some getting used to. We went yesterday to have the rest of his hair shaved off as it was so patchy and falling out everywhere. When we came out of clinic yesterday he lifted his hat and it looked as if half his hair was in it. It was difficult to watch his hair come off again. Although there are many physical things that remind me everyday that Austin has cancer, his hair is a very obvious one. It stares you in the face, and it breaks my heart.
Well, TOMORROW IS THE BIG DAY !!! Austin will be SEVEN years old .... yippee !!! He is SO excited about his birthday it is adorable.
Will update soon,
Love Beth
Friday, August 16, 2002 at 02:20 AM (CDT)
Hello everyone,
I'm sorry I've taken so long to update, it's been such a busy week! It's late, so I'll make it short ....
First things first, Austin is feeling good. His clinic visit on Monday was short and sweet. His numbers were all good, so we were in and out in no time. He was definitely in a hurry to get home so he could play with Aaron & Christopher (leftover from a sleepover). I had to make a couple of stops on the way home and you'd think I was torturing the kid. Well, I finally got him home and he enjoyed the rest of his day :0)
Through the week he enjoyed visits from Marky & Michael and his friend Christian. The kids have been LOVING the pool, it certainly has been getting LOTS of use!! Austin is a nut when he gets in the water, it is the best thing we could have done for him. A few times this week he looked a bit sluggish, but boy as soon as he jumps in that water, he's a different kid!
This morning's clinic visit wasn't quite as fast as Monday's. Although his hemoglobin was a whopping 106, his platelets were only 16. This usually doesn't warrant a transfusion (under 10 does), but since the weekend is coming the doctor decided to give him platelets. So back to the regular routine of benedryl and tylenol. He fought hard to stay awake which made for a pretty grumpy bear. Short lived though, he was back to his normal self in no time (after a nap on the way home). Once again, he experienced high blood pressure for about an hour. Today's reading went as high as 170/120. While this isn't the highest it's been, it's still pretty high! It could have accounted for his grumpiness as well? We had to stay for a bit after his transfusion to wait for it to return to normal. They were happy with 120/70 (normal for his age is 95/?). Again, the doctor was informed, but nothing came of it. Well, I shouldn't say that, Austin ended up with an arm full of peticei (sp?), little tiny blood spots, all over his arm from the blood pressure cuff. It is set up to take readings under 125, so when it didn't find his pulse (?), it would squeeze again. Because of his low platelets, he broke out in hundreds of little red spots. He looked as though he had measles on one arm. We will make it routine to check his blood pressure every clinic visit, and see if we can figure out what's going on.
That's about it for now, will update soon!
Love Beth
Friday, August 09, 2002 at 11:05 PM (CDT)
Hello,
Just a quick update to let you all know that Austin & I are home and so far so good ...
We were admitted Friday night to start hydration for chemo beginning on Saturday. Austin was in good spirits before going and didn't seem fizzed by it all. He understands that the pills weren't working and we need to get rid of those crumbs again. The only concern he had was that he might lose his hair again. I wish that was OUR biggest concern.
It helped a bit for him to know that Ashley was going to be having sleepovers at the same time he was. As it worked out, she wasn't able to start her chemo and we missed having her to spend time with. Her and Tricia came by on Sunday for a visit though, so the two had fun playing cards and eating snacks while Tricia and I got caught up on stuff. Thank you both for coming on a "day off from the hostibal" to see us ... it was a great visit!
We also had a visit from Brenda and Cody. Cody & Austin had fun playing Nintendo (what else??), we missed Jessie though ... hope to see him soon! It was also good to get caught up with Mary as well, thanks for coming up to say hi!
Saturday seemed like a rough day for Austin. I guess his body has had enough of a break that the first day hit him pretty good. He was very tired, and a bit nauseaus for a while. Other than the first day, he tolerated the chemo great. No vomiting, he ate very well and for the most part felt good. I think it was Tuesday he had an episode of high blood pressure for a few hours. He had a terrible headache that looked even worse. He eventually fell asleep with a cold cloth over his entire face and woke up feeling much better.
The six days went rather slow, but all in all, can't complain. We're home now ... Austin hasn't missed a beat, he's back to playing & running around like nothing happened. We arrived home to the kid's new pool (a kiddie pool, but nonetheless, a pool), so Austin couldn't wait to jump in. After swimming a while, he had a great time playing baseball with Daddy, Aaron & Amber. I watched in amazement as he ran around the bases over and over again, thinking about what he had just gone through the previous five days. He has continued the pace and has been busy since. We spent yesterday enjoying a day of visitors and today the kids having their friends over.
I on the other hand am zonked. I think I caught a major lazy bug in the hospital and can't seem to get my energy back. It's exhausting to do "nothing" for five days and it seems to take a few days to recover - as good as my intentions seem to be, it's not enough. Hopefully tomorrow will be more productive!
Enjoy your weekend,
Love Beth
Wednesday, July 31, 2002 at 03:29 PM (CDT)
Hello everybody,
The past couple of days have been difficult . As much as we knew in the back of our minds that things could turn around in an instant, I don't think you can really prepare. It came unexpected, as Austin is feeling and looking the best he has in such a long time. So now that we are over the initial shock, we are ready to put our fighting shoes back on.
Glen & I discussed the options we were most likely to hear in our meeting today. Together we decided that if the doctor's felt it was reasonable, we would like to put Austin back on the Topotecan / Cyclophosphamide combination. We are both comfortable with this decision at this point in time and hoped the doctors felt the same way. As it stands, the oncologist today has no problems trying this combination again and will admit Austin on Friday night to start chemo on Saturday for five days.
The only other option worth considering at this time would be another chemo agent, Irinotecan. There are a couple of reasons we didn't want to start this drug, but will consider switching to in a heartbeat if the Topotecan combo starts failing.
Thank you all for your prayers.
Love Beth
Tuesday, July 30, 2002 at 10:43 AM (CDT)
The news is not good.
Austin's bone marrow has come back positive. Because he had two clean bone marrows (March & May), this indicates progressive disease and he is therefore ineligible to continue on the fenretenide.
We will be meeting with the doctor tomorrow to discuss our options. Please pray for our family as we will be faced to make such horrible choices for our son.
I will update you as soon as I know anything,
Love Beth
Thursday, July 25, 2002 at 02:14 PM (CDT)
Well the hard part is over for Austin, now comes our turn ... the waiting is always toughest on Mom & Dad.
Things seem to be non-stop around here lately. We have been very busy this week, starting with a great day on Saturday at Canada's Wonderland. Once again, Help a Child Smile treated us to an absolutely magical day with our kids. Thank heavens for HACS, it seems to be the only way we would ever be able to enjoy day trips such as these. We had a great day that started off with a lunch provided by HACS giving us the chance to bump into other families who we hadn't seen for a while. From there it was non-stop rides. The three kids (Erika stayed home to be with Nana) are so different in the way they tolerate rides. Aaron is very reserved and would prefer to stay off anything that gives his belly butterflies. He actually sat off a few times by himself and let the rest of us enjoy rides that he didn't necessarily want to be on. He did manage to do a few rides, his favorite was Thunder Run - just about his speed. Amber likes to scream alot on rides and acts as if she's terrified, but ends the ride with a big big smile telling you how great that was! The Fly was Amber's favorite. Now Austin, he just loves rides from start to finish. He spent most of his time laughing and wanting to go again & again. He can't wait until he's bigger so he can tackle the most thrilling rides. He's told us that as soon as he graduates to a purple wristband, he really wants to do the bunji jumping (there you go Trish), and Glen & I both don't doubt that he'll do it. Austin's favorite ride this year was Swing of the Century. After the rides we headed over to the water park where the kids & Glen had lots of fun doing the water slides.
Sunday we (OK, they) enjoyed swimming at their "favorite" pool. Austin is still trying hard to swim without his water wings but still needs rescuing once in a while. Erika insisted on going down the water slide, so when Daddy was able to catch her, away she went. This child has no fear, she's constantly climbing or jumping somewhere.
Monday Austin had his bone scan & MIBG injection. His CT Scan was cancelled because the scanner broke down. It was rebooked for Thursday. We also dropped off his 24-hour urine collection.
Tuesday he had his bone marrow aspirate / biopsy. He recovered quickly considering the doctor said that Austin decided to be a tough patient. I thought he meant that he couldn't get a good bone sample, which it ends up he thinks he did. He meant that they had a hard time keeping Austin asleep with sleepy juice. The nurse in his care told me that she didn't remember ever seeing a child tolerate that much "sleepy medicine" before. He had a really good sleep and woke up a bit dizzy. By the time he got home, he was running around all over the place. He had three of his friends come visit that evening, which to me is unbelievable considering what he had been through that afternoon. The aspirate looks good, we are now waiting for the biopsy results which we will have on Monday. Prayers, prayers, prayers ...
Wednesday was the MIBG scan and ultrasound. Both went well, and we will hear the results on Monday. The radiologist in U/S verbally reported that things looked unchanged.
Today we finished off with the CT Scan. We were a bit frustrated when we got there. As we got off the elevators, we bumped into our oncologist who informed us that the CT Scanner was down again. We headed over anyway, where we found a technician close to tears telling us that for the third time this week, the scanner was down. Since they only have one scanner, this is presenting ALOT of frustration for alot of people. Luckily we checked back about an hour later and found it to be working again and went ahead with the scan. Austin needed benedryl before his IV contrast, so slept through the scan and woke up in our driveway two hours later. He woke up in a very talkative mood, and doesn't look like his week's been any different than anyone elses :-)
By the way, his counts on Tuesday looked great. His hemoglobin is the highest it's been since he relapsed 1 1/2 years ago. (136 !!) Bloodwork for the fenretenide was also done on Tuesday.
We have scheduled an appointment to talk to the doctor on Monday about the results. If everything is okay, we will start Austin on his sixth round of fenretenide next week. Prayers, prayers, prayers ...
Take care,
Love Beth
Friday, July 19, 2002 at 06:39 PM (CDT)
Hello again,
Austin continues to enjoy his summer keeping himself busy with his brother & sisters.
Tuesday we enjoyed our visit with Corinne & Jerry and were able to celebrate Uncle Dave's birthday together. It was great to see them both and we are sorry we'll have to miss your get together on Saturday.
Wednesday we enjoyed a day at a friend's sister's place, swimming in their pond. It is a beautiful place with a wonderful place to swim. The water is crystal clear and the kids had a great time jumping in off the dock, swimming, fishing, and peddle boating. Thursday the kids had fun jumping into Uncle Dave's pool, and tonight we are taking a night off and staying home for once!
Austin's round of Fenretenide finished up and now we anticipate next week's scans and bone marrow biopsy. To look at him I would say there is no way in the world the cancer is back. Let's pray I am right. Please include Austin in your prayers this week as he suffers through yet another battery of tests.
Take care,
Love Beth
Sunday, July 14, 2002 at 10:33 PM (CDT)
Hi everybody,
Well, day five of the fenretenide and absolutely no signs of any side effects. It has been a breeze, too easy actually. I often wonder how something so easy could be keeping such a nasty disease at bay.
Judging by the kind of week Austin's been having there is no way he could be feeling anything but wonderful. Some highlights of his week ...
Swam without his water wings for the first time in Uncle Dave's pool. He did an awesome job swimming under water, but needs to work on his technique above the water.
For the first time since we got the dirt bike (third summer now), he has been riding on the front with Aaron tearing up the yard having a ball. He actually thought he might like to try driving it without Aaron's help, but after taking the kickstand off and falling sideways just as fast (as he kept hold of the gas full speed and didn't let go), he decided that wasn't such a good idea. Aaron's been pretty good at keeping the bike steady with the extra body on board, except for the wipeout they took in the field (trying to do a skid), and the bike landing on Austin's leg, scraping it pretty bad. Oh ya, and the skid in the driveway where he lost it, but this time Austin had all of his gear on - his knee pads saved him that time. Boys will be boys!!
Seeing who can climb the highest in the willow tree. Don't have to worry about how high Austin's going to get - I think when he got stuck a few branches up and couldn't get down was enough for him to stay close to the ground!
Did a fantastic job helping Daddy building Nanny & Art's new deck. Just give him a drill and boy is he happy! What a great little worker he is, and always has been.
Took some left over pieces from the deck and has been busy building shelves for his fort on the swing set. He's pretty proud of his carpentry. The hammers haven't stopped all week, he's always busy banging something.
Spent a morning wiggling his front tooth that wasn't even loose when he woke up. Before noon he had pulled it out and now we have one toothless kid. He is now missing his two upper front teeth and one bottom one. For me, this is a milestone I never thought we'd see. I can't tell you how much these little things mean to me - things that most people don't give a second thought to. Everytime he smiles he reminds me of how blessed we really are!!
Had a game of "who could spin the fastest" on the tire swing yesterday. Judging by how many times he spun around at the speed he was going, it was very obvious that the fenretenide is NOT making him nauseaus. He was laughing all the while I was dizzy watching him!
Spent this afternoon seeing how much sand really fits in his bathing suit. We had a great day at our friend's cottage on Lake Erie. The kids had a great time in the water and playing in the sand. We came home with more rocks to add to Austin's collection and more sand than we know what to do with.
So .... I'm off to put the sand pile into the washing machine. Hope everyone had a great weekend. I'm so glad the Cormier's were able to spend this weekend together and can't wait to hear all about it!
Take care,
Love Beth
Check out the new pictures !
Wednesday, July 10, 2002 at 12:55 PM (CDT)
Hello,
Not much to update, Austin started his fifth round of fenretenide today. He wasn't thrilled with the idea of taking it again, but he did so without much fuss.
The kids have been very busy - here and there and everywhere - birthday parties, pool parties, sleepovers, play dates, etc. etc. I'm still going strong - but I'm not sure how much more I can handle before I flop and say I can't take it anymore!! Seriously, I couldn't be happier :-) Life is good for us and I'll take this kind of busy anyday!!!
Will let you know how the week is going,
Take care,
Love Beth
Saturday, July 06, 2002 at 09:28 AM (CDT)
Hello,
Sorry it has taken so long for an update. We had been experiencing brown outs in our area for the a couple of days and I didn’t want to mess up my modem. Been there, done that ... and I really do need the computer these days. Not to mention that I spent quite some time on an update last night only to have it freeze and be wiped out. So I will try again, but I guarantee it won’t be as good as the first one!
Austin is doing wonderful - do you ever get tired of hearing that?? (I didn’t think so!) He has been enjoying having the kids home and has been able to enjoy the company of his friends. His latest adventures include building tree forts. Everything but the kitchen sink is being hauled up any tree that will support it. He has actually been very creative. I guess we’ll put up with the skipping ropes hanging from the trees for a while - well until his next craze anyway.
Tricia & I were able to make our trip to Chicago. As I mentioned earlier, we were waiting on the results of Ashley’s tests. As it was, Ashley was in the hospital when we left. It was a difficult decision for Tricia to know whether to go or not, but thankfully she had the amazing support from friends and family and was able to go with some piece of mind that Ashley was in good hands! We flew out of Buffalo and from the get go everything went as smooth as could be, like Tricia said, we were meant to be in Chicago.
The conference was great! The speakers were very informative and ranged from topics such as staging and diagnosis to new therapies aimed at relapse. The speakers included doctors from Chicago, Michigan, Philadelphia and California. I was impressed by the time they took out of their busy lives to come talk to us. They gave us their total attention and even went so far to make time for one on one discussions. On Thursday night, it was a pleasure to meet and spend some time with Dr. Reynolds, one of “the” most passionate researchers of neuroblastoma.
I was able to ask around for reasons why Austin’s catecholomines would be elevated even though he has no detectable disease. Answers ranged from “I don’t know” to “could be tumor” to “might be mature tumor somewhere”. So no closer to figuring that one out. There was also a speaker talking about late side effects of chemotherapy. I was able to ask him about Austin’s blood sugar levels, and he gave me the name of an endocrinologist
who specializes in oncology. I will definitely be contacting him to see what he thinks. Both speakers I asked didn’t think it was related to the chemotherapy but possibly the elevated catecholomines.
There was discussion on some new approaches to neuroblastoma therapy. Most all of it was a refresher for me, but I do think that this conference has linked me up to some valuable contacts should we ever need them in the future.
It was also totally incredible meeting some of the people that have become a big part of my life through the internet. I had the honor of meeting some of their children who are struggling / or have survived neuroblastoma. Words cannot describe the feeling of having a roomful of parents who are all on some level of experiencing neuroblastoma in their lives. It truly felt like a big family hungry for knowledge. Together we were able to learn, laugh, cry and grieve with each other. It was overwhelming to say the least. I am totally grateful to Pat Tullungan (& family) for the effort and passion that she put into making this weekend possible. Pat lost her son to neuroblastoma two years ago, but she continues on fighting for all those still struggling with this disease. I have the utmost admiration for what she has accomplished in such a short time and all that is to come in the future. As I understand she has single handily established the Children’s Neuroblastoma Cancer Foundation without which, a conference of this magnitude would not have been possible. The Foundation has been set up with the goal to help find a cure for neuroblastoma and other solid tumor cancers in children. What an amazing woman !!
Tricia and I actually managed to find time to fit some sightseeing in. Chicago is such a beautiful city. Our hotel was downtown, with a view of the Chicago River and Lake Michigan. Friday we took a short walk down Michigan Avenue. On Saturday we walked down to Navy Pier where we had a nice lunch, did the ferris wheel and got some (hopefully) awesome pictures, and got a great view from the lake of the Chicago skyline on a speed boat tour. We left there and walked down the lakeshore to Grant Park, where there was a huge food festival happening. We walked so much our legs felt like rubber by the end of the day. Sunday we were able to leave on an earlier flight so Tricia could get home to Ashley sooner.
Since I’ve been home, it’s been so busy I haven’t found much time to do much of anything. Monday we celebrated Canada Day at our place. We had about forty people over for fireworks which were totally awesome. The guys are finally getting the hang of it after all these years!! Marky & Michael were here for a sleep over, so the kids spent Tuesday playing around the house.
Thursday Austin had clinic to do the bloodwork necessary before his next round of fenretenide. His counts are still in great shape, hemoglobin was 134, white count 4.8 and platelets 113. We will go back next Tuesday to get the results of his blood tests and hopefully pick up his pills to start his fifth round on Wednesday.
We were also able to meet with the endocrinologist today to discuss blood work that was taken last month. She reported that the first test she ran, which gives a measure of the average blood sugar in a day, was in normal ranges. This was good news and means that although he is experiencing highs and lows, he is still within the average on a daily basis. This is one of the most accurate ways to determine whether someone is diabetic or not. The not so good news was that his C-Peptide level was alot lower than it was in January. This means that his insulin production is impaired, and has changed significantly since last checked. The interesting factor was that when his C-Peptide was very low, his blood sugar was within a normal range. All of this still leaves the endocrinologist puzzled, she still can’t say for sure what is causing this to happen. We have agreed to keep watching, and check these levels every three months, unless of course I see physical signs of the condition getting worse. Her gut is telling her that Austin is in the beginning stages of Juvenile Diabetes and was caught because of his constant monitoring. My gut tells me that we need to get those catecholomines down to know for sure !!
That’s about it, I’m sure I forgot a whole bunch of stuff, but I will close for now. Hope everyone is enjoying their summer so far ... and enjoying this heat!! I AM for sure!
Take care,
Love Beth
Tuesday, June 25, 2002
Today we celebrated Amber's 9th birthday. She is growing up so very fast :-) She had a great day, as it was their last day of school - a perfect way to celebrate a birthday. She had four friends come home with her to party with, they had lots of fun playing games and making crafts. She also enjoyed a birthday date with Nana yesterday, something my mom does with each grandchild on their birthday. She is creating very special memories for each of them :-)
Wednesday, June 26, 2002 @ 2:30 pm
Austin seems to be feeling much better. He finished his pills last night and as weird as it sounds, he already looks different with just missing this morning's dose. Now it will be a chore to juggle between his low glucose levels and this heat. He just walked past me as I'm typing this and I can't stop but thinking how adorable he is !! The kids are home for their first day of summer vacation. It was already nice this morning not worrying about getting them off to school. This afternoon their school bags are being put away ... finally !!
As far as I know, we will be leaving for Chicago tomorrow, so I will update you when I get back. We are waiting for the results of Ashley's tests before we make the final call. Nothing is ever easily planned when you have a child with cancer ...
Will update soon,
Have a great (& safe) long weekend!!
Beth
Monday, June 24, 2002 at 08:17 AM (CDT)
Let me start this entry by asking that along with Austin you include his friend Ashley in your prayers. She also has neuroblastoma and it is suspected that her disease is progressing. I am still praying it isn't so. Her parents, Tricia and Ken, both need our prayers for strength and guidance in the coming week as they evaluate Ashley's condition.
Wednesday, June 19, 2002 at 08:53 AM (CDT)
Hello everybody,
Well it's been another fairly relaxing week around the Davis house. As relaxing as it can be with four children that is!
Friday Austin had his blood work done to determine whether he meets the criteria to start another round of fenretenide. Everything came back in the normal ranges, so he is all set to go. He started his pills this morning and will continue taking them until next Tuesday. He said it felt like a very long time since he last took them, so I'm happy he doesn't feel like these pills are taking over his life! He continues to have a dry patch of skin between his eyebrows and just last night he developed a rash (not so much bumps, but red raw - like a burn) in his groin (??) area. Hopefully it disappears fast because it looks very sore. I imagine that this could be caused from the fenretenide as well.
For some reason, they didn't check his white count / platelets / hemoglobin on Friday. I'm bothered by this, as last check on June 4th found his white count on the low side and his platelets dropping from 135 to 96. He isn't due back in clinic until July 4th, but I might take him sooner just to have his counts checked.
The weekend went by quickly. Friday night we spent a quiet night cuddled up on the couch watching Harry Potter. Saturday we spent the day around the yard, in and out of the rain. We managed to get our flowers planted, in the rain, but at least they're done. Sunday was a busy day, starting off with Daddy getting his Father's Day cards & things. Austin gave him a pumpkin seedling, so we're excited to find a place to put it and watch it grow. The kids spent their day doing "guy" things with Daddy. Grampie & Bonnie came for a short visit, we were all happy to see them as they came up from NY for the weekend. The kids spent the rest of the afternoon having a blast on a friend's go cart (dune buggy, whatever??). It was very cool! We also brought Gramps a cake for Father's Day and helped him eat it :-)
Out of nowhere, Erika spiked a temperature Sunday afternoon and wasn't feeling so great. Nothing came of it, it was gone by Monday afternoon. She wasn't able to come with Austin & I on Austin's field trip to Happy Rolf's petting zoo and Avondale Dairy Farm. Austin had a good day, he really enjoyed seeing the dairy cows and learning how ice cream is made. He especially enjoyed eating the ice cream, a big treat for him! The day pooped him out, or so I thought, he fell asleep on the bus ride back to the school. I found out when we got home that his sugar was too low, very confusing as he had just had a big ice cream cone, and probably the reason he fell asleep on the bus. He managed to muster up some more energy and had Marky & Michael over for the afternoon / evening. They were running around all over the place having a great time.
Yesterday, the kids had their play day. They all had a good time. Amber's team came in first place, so she's pretty proud of her "red" ribbon :-) Austin came home with ribbons on his shirt, but they weren't his .. some of the kids at school had just given them to him ... just because :-) Last night, Austin enjoyed being able to visit Christian at his house - it's been a LONG time since he's been "out" on his own. It felt strange without him being here, even for a short couple of hours. Amber & Aaron both had friends over, so it was a busy night.
And once again, today Erika & I are on our own. She's just finished watching Teletubbies and looking for someone to play with .... gotta go!
Take care,
Love Beth
Wednesday, June 12, 2002 at 07:41 AM (CDT)
It has been a very quiet week. Austin is at school for his third time this week, something Erika and I just aren't used to! He is doing so unbelievably well, it is just amazing to watch him play and run around like there's not a care in the world.
We've been spending alot of time at home which has been so nice (& different). Sunday we were out in the yard - the weather has been so beautiful. Glen and the boys rigged up a water spout thingy for the pond, looks like they had alot of fun being creative. They must have found some fishing stuff while they were hunting for materials, so they've spent the last few days doing that. They know that they aren't going to catch anything in our pond (there are only a few little fish), but deep down they are expecting to reel a "BIG" one in. The closest they have come is a big hunk of algae.
Marky has been over the last couple of nights to play. The kids have been spending alot of time in the field lately, their newest game is hide and seek in the long grass. It looks like they're having alot of fun!! Aaron & Amber have been riding the dirt bike quite a bit as well. Can't forget that Marky & Austin have been talking "privately" in their hideout too! Amber informed me that Austin now likes the same girl that Marky likes, so they are double dating. This is just way too cute!!
Well, it's 9:00, the kids are all gone, Erika's still sleeping, I have to go find myself something to do. Austin has his checkup on Friday. He will be getting the bloodwork done to see if he can start his fourth round of Fenretenide.
Take care,
Beth
Saturday, June 08, 2002 at 02:57 PM (CDT)
Hi everybody,
Austin continues to do well, except for the odd bout of tiredness which I’m sure is the direct result of his third Fenretenide round that was completed on Tuesday. Other than occasionally being tired and the small dry patch between his eyebrows, Austin tolerated yet another round of chemo, not bad considering there are many side effects he could be experiencing.
He is maintaining a good appetite which has always been his strong suit. Unfortunately, I’m constantly having to say “no” to alot of things he wants to eat because of his elevated blood sugars. This was the focus in an appointment with his endocrinologist on Tuesday. Since January, Austin continues to have very big highs and lows with his blood sugar. We stopped monitoring him a while back because it seemed we were poking him unnecessarily, seeing as it doesn’t matter if his levels are in the 20’s or 2’s, we aren’t treating him for it anyway. I can usually tell when he is suffering from low blood sugars, so a quick drink of juice or pop relieves that problem. With all the high numbers, he still isn’t showing ketones in his urine - which is a good thing. Our discussion with the endocrinologist went well and I was able to voice my concerns about a lack of follow up on their part. She will be repeating some blood work and comparing the results to those of January to see if there are, if any, changes. From what I understand, the results from January confirmed that Austin isn’t diabetic - so that led to my next question - why is he
experiencing these problems? Of course she couldn’t answer that, but after filling her in on some of the things I have noticed the last few months, she will again be consulting with the nephrologist. It is still a best guess, but we think his elevated catecholomines have something to do with it. Other than that, she gave me the go ahead to let Austin eat what he wants, within reason. Austin took that literally, and totally pigged out the next day, sneaking food that he hasn’t enjoyed in months. I had to set him straight and define “within reason”.
His clinic visit this week was short & sweet. His counts all looked good, hemoglobin 132, platelets fell a bit again to 97 which seems to fall into the same pattern as the first two rounds of Fenretenide. I am waiting to see his counts next week to confirm my suspicion that this is the reason for these fluctuations. The results from Austin's last 24 urine results came back (done after Round 2), just slightly lower but not enough to get excited about.
Thursday, Austin had his eyes checked again. This appointment went alot smoother and was alot quicker. His results were better than last, so the doctor doesn’t need to see him for another three months. There were no signs of pseudotumor cerebri which is a serious side effect of the Fenretenide. I did comment that Austin’s eyes looked glazy and he told me that was more than likely caused by dryness, which can be attributed to the drug.
Austin managed to squeeze one day of school in this week. He had good intentions on Monday and Wednesday but was too tired to follow through. I know that when he feels good enough he is more than happy to go, so I don’t press the issue. If he says he’s too tired, I believe him and we leave it at that.
Today Austin is spending the day with Marky. They’ve been busy playing Nintendo and playing out in their fort outside. Marky told me they were talking about their girlfriends, well “his” girlfriend anyway. Christian is here for a little while, so the three of them are in the middle of having a Pokemon marathon.
I have some exciting news ... I have been invited to a Neuroblastoma conference being held in Chicago at the end of the month. I will be going with another nb mom, Tricia (Ashley’s mom) and am so looking forward to it. There are a couple of speakers that I am very interested in hearing from and hope to learn more about the research and treatment protocols being administered for relapsed neuroblastoma. I’m also looking forward to meeting other families whose children have neuroblastoma. All in all it should be a very interesting weekend!
Will update soon,
Love Beth
Friday, May 31, 2002 at 08:26 AM (CDT)
Hello,
Round 3 of the Fenretenide is going very smooth so far. Austin doesn't give much thought to eating his "yucky" pudding anymore, he's actually started to do all four teaspoons of pudding without taking a drink of water in between each spoonful. Maybe soon he won't even have to add "good" pudding in with his "yucky" pudding. Either way it doesn't matter, he's doing a great job taking his medicine!
He was able to go to school yesterday for the first time in a while. He seemed to be excited to go, although he was a bit nervous too. Since he hasn't been to school in a while, the other kids haven't seen that Austin's hair is coming in. Austin wanted to go and get his head shaved before he went to school so that the kids wouldn't tease him. Who would've ever imagined that a child would be insecure about HAVING HAIR??? It is a big issue for Austin lately. He remembers last time he had hair, and of course it was so beautiful that EVERYBODY ran their fingers through those locks!! HE HATED IT! I used to cringe when I saw someone come up and go for the head - I KNEW exactly how Austin was feeling, but other than posting a big sign on his head saying "DON'T TOUCH THE HAIR", there's not much we can really do.
When we were out the other night for dinner, the subject came up so Austin & I were telling Glen about his head problem and how everyone seemed to have to rub it. We talked to Austin about it some and changed the subject. NOT 5 MINUTES LATER, two old ladies walked by our table, the first one went up to Austin, RUBBED HIS HEAD (LOL) and told us what a beautiful family we had. This lady had no clue that Austin was bald a month ago, I guarantee it. WHY????? did she rub his head????? We told Austin it's because he's so darned cute and everyone has to touch him ... which is the truth ... you just can't help it!! He laughs and smiles and knows it's in people's nature to do these things and like everything else just goes along with it !!
OK, I got sidetracked ... I started to tell you about school. Mornings around our house are pretty rushed. The kids are great at getting ready, it's me, I'm the one that isn't too quick. The bus comes at 8:00, and I swear every morning I'm still packing lunches at 7:58. It's a quick handoff with the school bags at the door. Anyway, yesterday morning we had to do Austin's pills before he left - didn't squeeze enough time in - and he missed the bus. So when I took him to school, we got to his classroom and as I looked inside, all the kids were busy working away. They looked up and saw me (Austin was still in the hallway) and all yelled "AUSTIN". A few jumped up but the teacher told them to sit down. They were all so antsy, that the teacher realized she wasn't going to win this one - and said "OK, go say hello to Austin". All twenty of them barrelled over to the door and gave Austin the biggest kid hugs I've ever seen in my life. Boys and girls were giving him the sweetest bear like hugs. Austin was still in the doorway, so only so many kids could get around him, the WHOLE class was locked in a hug starting from Austin and forming a chain. It was the sweetest thing I've ever seen. Austin obviously missed them too because he had a smile from ear to ear. This morning we were able to get lunches and medicine ready and off he went on the bus. They have art day today, can't wait to see what they bring home!
So everything is good and Erika & I are going to enjoy a quiet day together!
Have a good weekend,
Love Beth
Wednesday, May 29, 2002 at 10:43 AM (CDT)
Hello everybody,
Well I'm starting to absorb our news the other day of Austin's bone marrow coming back clear for the second time in a row. It is such a mixed bag of emotions when dealing with life and death issues in the case of your child. On one hand we are ecstatic with the news of Austin remaining in stable condition, on the other we are terrified of the reality that our son has a disease that we've been told will eventually take his life.
Not a moment goes by where I don't look at Austin and his innocence and wonder why he has been chosen to struggle with this disease. He is the sweetest most loving child with so much to offer and yet he has to deal with things he doesn't even understand. I watch him play and am totally mystified how something so horrible can be living inside such a precious little boy. I watch how loving and giving he is and wonder why God would ever want to take that away from us.
It's probably hard for you to understand that while things are going so good I could be feeling this way. It is so hard to believe that our child will be the one to survive when so many other children are dying from the same disease. I am constantly being reminded that Austin has been diagnosed with a form of cancer that isn't knocked down easily, and even when it is - it just gets back up even stronger than before. It is especially hard when the doctors keep reminding you that neuroblastoma isn't cured easily, nevermind that fewer will survive a relapse. Don't get me wrong, I have faith in God and hope & pray everyday that Austin will be one of the miracles that so many other parents crave. In fact, I know that we have already been blessed with so many miracles and am very thankful to God for each and every one. Austin IS a miracle, and he truly is so special - there is nothing about him that isn't wonderful. We are rejoicing at the news that there is no evidence of cancer in his body - thankful that we have been given so much time with him to love him and be loved by him. We have been given much more than alot of families in the same situation have had to deal with and for that we are grateful.
Austin is thriving and is enjoying life to it's fullest and will continue to do so for a very long time. We don't know what tomorrow holds, so we give thanks for today ... and pray it's just as good as yesterday :-)
So as I struggle to sort out my emotions, Austin couldn't care less ... he is doing wonderful and doesn't have a care in the world ... as it should be. We were able to celebrate Erika's 2nd birthday together on Sunday, although her actual birthday was yesterday. She was so excited to have everyone come share her day with her. She totally enjoyed her Teletubbies cake and all the presents she received. She has been singing Happy Birthday Erika for the last three days and keeps telling us about everyone who was there. She is such a doll !!
Monday, Glen & I and the kids got away for the day and headed up to Collingwood. We stayed the night and came back Tues. night. The kids had a great time swimming and just getting away. Erika went swimming in a pool for her first time and totally loved it!! Since we got back late last night, I am giving the kids a recoup day at home today. They are busy playing downstairs ... even after 4 days together they aren't tearing each others eyes out, pretty good, eh?
Medically, Austin began his third round of Fenretenide this morning. For the first time in what seems forever, we are in the midst of an eleven day break from the clinic. A good feeling :-)
Take care,
Love Beth
Friday, May 24, 2002 at 06:43 PM (CDT)
ALL CLEAR !!!
Bone marrow aspirate AND biopsy were both clear. The ultrasound & CT Scan both reported the soft tissue mass (residual mass in abdomen) which again hasn't changed in size (3 years & counting). The bone scan & MIBG are unofficially AOK. Urine tests are still pending.
All I can say is ...
Thank you God
Thursday, May 23, 2002 at 03:34 PM (CDT)
Home at last! Today has been a long, tiring day ...
We started bright and early for an MIBG scan that began at 8:30. Austin did a super job of course. He busied himself with a Rugrat movie while he had his scan. After the scan, he had his fingerpoke and we headed up to the clinic. From out of no where, he got so tired and complained of his legs hurting. He couldn't walk up to the clinic, so Erika pushed him in her stroller. What a sight that was. He wasn't able to eat this morning since his CT Scan was booked for 10:30, so I'm sure his sugar was low - but because I didn't bring his glucometer we couldn't check. The girls in the clinic went on a search for one, but couldn't find one that worked.
Upon arriving in the clinic we were told that Nuclear Medicine had called up and asked us to come back tomorrow for another MIBG scan. Routinely two MIBG scan's are booked in, a 48 hour and 72 hour. If the first scan is obvious & clear to the radiologist, they don't usually have you come back. Needless to say, I am very concerned & worried about them wanting to repeat it tomorrow.
Because Austin was obviously not well, we decided to head down for the CT Scan & skip the clinic visit so that he could be hooked up to his IV and start drinking his contrast. I knew his "Diet Coke" would perk him up a little :-) Very strange today, as the IV nurse was just about to access Austin's port, the doctor told them not to because he said it wasn't necessary to do the IV contrast. I didn't get an answer as to why he wouldn't need the contrast today when he has had it every single scan since he's been diagnosed. Why did this doctor feel it wasn't necessary today? I guess he didn't feel the need to come and discuss it with me, so I am a little lost. I will definitely be asking our oncologist about it. On a plus side, this meant no IV, and no benedryl as the IV contrast is what Austin has had a reaction to in the past.
We were down in radiology for 10:30. They mixed his contrast with his pop at 10:50, already 20 minutes late. They didn't start the scan until 12:20. This is a LONG time for a child who is starving and is suffering from low glucose levels - luckily Austin is such a trooper and sat quietly as he watched Pokemon, not saying a word. Erika kept busy riding a tricycle back and forth in the waiting area but was getting tired & hungry too.
Finally we were done and got to have lunch downstairs. We met Ashley & her mom, who found time in their very busy day to watch Erika for me while I went with Austin to have his CT scan done. Thanks guys! Erika was so tired she fell asleep in the middle of eating her grilled cheese. Austin ate enough to perk himself up and spent the rest of the time in the hosp. riding around on his favorite bike.
So we are home, and my gut is wrenched. I pray that tomorrow's MIBG was needed because Austin moved or that this certain doctor is the one who "always" asks for the 72 hr. scan to be done. Since we cut our clinic visit short today, I wasn't able to talk to our doctor about the bone marrow results. We will be doing this tomorrow when we aren't so rushed for time.
Will let you know how it goes,
Love Beth
Tuesday, May 21, 2002 at 04:30 PM (CDT)
Hi everybody,
It seems like forever since I last updated. Everything still going smooth - just the way we like it!!
Austin had his bone marrow aspirate / biopsy on Thursday. His counts were a bit better than on Wednesday, platelets were 135 - up just a bit. His bone marrow procedure, like always went well. When he woke up from his "sleepy medicine" he was very hungry and didn't leave until he polished off the lunch that he packed himself that morning. Erika came along and kept us all amused while Austin slept off his meds. She is quite the character. The doctor said he got good samples so hopefully we have the pathology reports back by Thursday. I'm very anxious to hear the results.
Our weekend was good, cold, but good. Friday I took the kids shopping to pick up some things and we stopped at McDonald's for supper, mmmmm! It's a big treat for Aaron & Amber who rarely get to have McD's. Austin on the other hand does "fast food" EVERY time we have clinic, which is two x week x the last 3 1/2 years. UGGGHH. Now of course every time Erika sees an "M" she freaks out wanting "Donalds". OH WELL ......
Saturday we were out visiting a while in the afternoon (... it was good to see you again, I miss our "visits"), and Austin had Christian over that evening. We had a fire for a bit, it's been so cold we were pretty well huddled on top of the fire. Of course the kids all love it no matter how cold it is! Sunday we had Marky over for the evening. Marky & Austin have to be the biggest nuts when it comes to Nintendo & Pokemon ... they are just unbelievably obsessed. When they're not together playing, they're on the phone comparing notes .. it's too cute!
Today started early, having to be at McMaster for 8:00 for a bone scan injection. After the injection, we had to wait until 10:30 for the scan so we killed some time upstairs in the playroom. Erika just loves the "hopital" and has alot of fun while she's there. (Whenever I get her shoes on to go somewhere she thinks we're going to the "hopital" and gets all excited). The bone scan was quick and we were done by 11:00. By this time Austin was starving, but had an ultrasound at 1:00, so he couldn't eat. At 11:30, we went to ask the girls at U/S if there was something he could drink or nibble on, well our timing was perfect - they said they could do the U/S right away. His scan went well, Erika amused herself by playing "peekaboo" in the curtains and we were out of there by 1:00. Austin couldn't wait for his "fast food" today, we had to go down to the cafeteria for a grilled cheese. He ate it in two seconds flat ... he was so hungry. The doctor was in to check his scan, and "unofficially" told me that it looked good and that there were no changes from the last U/S.
Tomorrow is the kids track & field day. They are pretty excited, although Aaron was practising high jump today and got his back scraped up. He got his foot caught up on the bar and landed right on top of it. Now he's not sure he can claim any ribbons with his "injury". Austin is pumped for his first ever track & field. I hope the weather cooperates for them!
UPDATE: Austin placed fourth in
Thursday we will be back to the hospital for an MIBG scan, CT scan and our clinic visit. Hopefully we will have some of the results back by then.
Will update soon,
Love Beth
Wednesday, May 15, 2002 at 08:03 PM (CDT)
Hello everybody,
Not much has been happening since my last update. Austin continues to feel good and he looks great. Round Two of the Fenretenide is finished, so begins our evaluation to see if it is working. Today's counts were confusing as his platelets dropped to 100, down from 185 last check. This is a bit worrisome, but hopefully the Fenretenide is to blame.
We had a nice weekend. Saturday the kids enjoyed their school Fun Fair, and later enjoyed a visit with Marky & Michael. Mother's Day was, well - how could it not be so so special. I was treated to breakfast in bed, which came on a tray decorated with cards and flowers. It was very nice - what was even nicer was that I didn't have to eat soggy cereal this year!! I was treated to fruit & toast instead, although the toast was kind of cold. I got away with "being too full" to eat it, and offered it to the kids. Austin took one bite and told me there was "no way" he was eating cold toast. So no feelings hurt there! Aaron had made a flower out of chocolate, Amber made a really pretty picture of dried fruit to hang on the wall, and Austin had a cutting from a jade plant in a decorated cup. I was also pampered with poems and songs. Actually Amber & Austin dressed up in their formal wear and came downstairs to surprise me with "Happy Mothers Day to You ..." in the tune to Happy Birthday. It was very cute!
Monday & Tuesday were lazy days around here. Austin was feeling tired and wasn't crazy on going to school so he stayed home. He actually had a two hour nap yesterday which was surprising. He seemed alot more on his toes today.
Tomorrow Austin will be having his bone marrow aspiration / biopsy done. I don't have to tell you that I am very nervous about this one. I pray that the Fenretenide is working ...
Will let you know how it went tomorrow,
take care,
Love Beth
Wednesday, May 08, 2002 at 08:55 PM (CDT)
Hi everybody,
This morning we were off to clinic to hand in Austin's 24 hour urine. The doctor had some answers for us regarding the protein found in the urine sample on Monday. He said it was a tiny trace and that the doctor he had contacted regarding the protocol had given us the go ahead to start the second round of Fenretenide. Since there is no set guideline as far as the amount of protein, it was a judgement call. I'm relieved they have decided to continue as I was a bit worried to be delayed.
So Austin is on his way, he had no problems with the two doses he had today. Hopefully he handles this course as well as he did the first. He is planning on going to school tomorrow, his first time this week.
Tonight we celebrated Marky's birthday with him. Marky, his brother & sister came for a visit bearing a birthday cake. I didn't know it was his birthday when he called to ask if he could come over. His mom got on the phone & mentioned it and told me that Marky wanted to spend his birthday with Austin. They spent the night building a lego firetruck that I had tucked away for just such an emergency, of course Austin made no effort to conceal the fact that we didn't actually go out to buy Marky's present. Kids are just too darned honest! Anyway they had a good night, and Austin was more than happy to get treated to a piece of chocolate cake.
Erika was very into this happy birthday too! She loves "happy days" and I can't wait until her's comes at the end of this month. She will be turning two years old on the 28th, which seems unbelievable in so many ways. We are having so much fun with her, she is the biggest sweetheart - you just have to smoosh her all up!! For those who haven't seen her in a while you would be very surprised at how much she has grown. The baby in her is disappearing fast, she now talks sentences - very clear I might add, she sings songs, her favorites are Itsy Bitsy Spider, Twinkle twinkle little star, this counting song we do, and from start to finish (missing just a couple of letters in the middle) her ABC's. She starts every morning with a big hug and saying "good morning sunshine". She is just a doll !!
Amber starts her Grade 3 assessment tomorrow. It seems they put so much pressure on these kids to do well that I don't think they realize how much stress it causes the kids. They actually send a letter home asking that you put your kids to bed at an appropriate time and make sure they are fed a good breakfast before school. I guess it doesn't matter how tired and hungry they are the rest of the year. She is doing really well in school and is having alot of fun being a "big" sister!
Aaron has been busy with school work and sitting in front of the tube watching the playoffs. He's doing well in school and looks happy to have mom & Austin back home on a routine basis.
Will update soon on how the Fenretenide is going.
That's it for now, take care,
Love Beth
Friday's clinic visit was much longer than anticipated with alot of confusion and miscommunication.
Austin's eye exam wasn't booked for Friday as planned. Since this is part of his protocol, I would assume it should have been taken care of, but it somehow got missed. These things happen, but when brought to their attention five days before our clinic app't, I was a bit disappointed that they still managed to sweep the app't under the rug. Come Friday it was a bit late to try to get him in to see the eye doctor at McMaster, as he wasn't accepting any phone calls before clinic was done, which was early afternoon. One of the clinic nurses got resourceful and called her optomotrist in Burlington and scheduled an appointment for 12:45 that afternoon. I felt strongly about having him tested according to the protocol and appreciated the efforts of the nurse and her optomotrist for "fitting us in".
Austin had the bloodwork done that is required before each round of Fenretenide to make sure everything is within range according to the protocol. All of his blood work came back great and the doctor gave his AOK to start the next round. This was done much faster than I anticipated and left us plenty of time to scoot out to Burlington. We just needed to wait for them to get Austin's Fenretenide from inpatient pharmacy. After waiting for what seemed like forever, and still no pills - I had to call and cancel the eye appointment because we were too late. Luckily, they slipped him in for 3:30. Finally we got the Fenretenide and were off to Burlington.
The only good part of the day (OK, great part!) was reading the referral that our oncologist had wrote to the eye doctor. Austin Davis - relapsed Neuroblastoma Stage IV, now in
Austin's eye exam went well, very long, but well. After the normal eye stuff (which was perfect), he also needed a visual acuity test performed. This required Austin to stay very still looking into a machine - staring in one spot - for ten minutes at a time with each eye. The girl who performed the test said she was very impressed with Austin's concentration and that most adult's couldn't stay focused for as long as he did. That's our Austin!! After that test, he needed one more - looking into a machine with a bright light shining in his eye - (to take pictures of the back of the retina, I think). He had a very difficult time trying to keep his eye opened as he said it was way too bright. The doctor managed to get a couple of good pictures though. After reviewing all of the test results, the doctor would like Austin to come back in one month to be tested again. When doing the acuity test, he said Austin seemed to have trouble in one eye. He would like to test him again to see if it was because his eye wandered a few times (a VERY common thing that would give false results) or if he indeed is having problems in this area. We will continue to see the doctor in Burlington as I feel they will provide a more thorough follow up compared to the care we seem to be getting lately at home.
So all seemed to be OK and it was a go ahead to start the Fenretenide on Monday. Our next clinic visit was scheduled for the following week after completing this round. (May 13) A quick look at the protocol on the weekend left me feeling a bit uneasy as I had noticed a couple of tests weren't performed. Little things, but enough to bother me in a big way.
Austin amazed me in that he was looking very forward to starting his medicine today. He asked a few days ago, and was very ready to take his "pudding" this morning. We did his first dose this morning and planned on "popping" in the clinic to ease our minds about these tests not being done.
First though, Austin had his hearing app't done at Chedoke. I didn't realize, but they said it hasn't been checked since Oct. 2000. I'll have to look back, but it doesn't feel like it's been that long. I was sure we had it checked since his relapse, but who knows. I have had to cancel a million appt's because he was either inpatient or neutrapenic. Regardless, the good news is that since Oct. 2000 there has been no change in his hearing. This is a huge relief, since he received four rounds of Carboplatinum at the beginning of his relapse protocol. This is one of two drugs Austin had received in 1999 that caused his hearing loss.
The audiologist was "amazed" at Austin's ability to comprehend words and repeat them. There are certain letters that she knows he can't hear, but yet he still uses them in speech and seems to understand them in conversation. His tests show that he is in the severe high frequency hearing loss range. She told me that one notch more and he will need everyday hearing aids. Hopefully he stays at the range he is at, which is permanent, but at least he can still hear without the use of aids. She did recommend an FM system for school and has filled out the paperwork required to send to the school board. Hopefully this will be in place for September.
One last stop to the clinic. After going over the protocol with the nurse, it was clear that a couple of the tests were "missed". One of the tests is to check to see if there is protein or blood in the urine. This test is easily performed using a dipstick, which we did - and sure enough, he had protein in his urine. Just a trace, but since the protocol doesn't clearly state how much, or how to measure (ie. using a dipstick or actually seeing the protein), we have to follow their guidelines which simply says that there should be no protein or blood in the urine.
The guidelines say that if all the criteria aren't met, the round is to be delayed one week. So, we are not starting the Fenretenide as planned. I am disappointed & concerned that we aren't able to for obvious reasons and at the same time relieved that we didn't give him a week's worth of pills when he didn't measure up to what's required. The doctor ordered a 24 hour urine to check the protein more accurately, which we started this afternoon. We will hand this in on Wednesday and also complete the bloodwork that wasn't done on Friday that should've been.
Hopefully things get sorted out quickly. The important thing is that Austin is feeling WONDERFUL. He is up to no good and is being a little stinkerbum. Which reminds me, before I end this very long-g-g-g update I have to tell you what Austin said this afternoon as we were leaving the hospital. He started to talk about this guy we heard about yesterday who survived a horrific car crash. Austin told me that
Take care,
Love Beth
Friday, May 2, 2002(CDT)
Austin was presented a "Good Reading Progress Award today in their school assembly. He has been working hard, I am so proud of him!!
Friday, April 26, 2002
Austin had such a good week, this week looks to be just as good!
He actually got to go to school THREE days in a row!! He seems very happy to be fitting into the lifestyle of a "normal" six year old!! He spent alot of time with his friend Marky, who was here almost every night last week. He even had him over Friday night for a sleep over, and kept him here until Sunday. The two of them get along adorably, they are so good for each other. I can't help but sit and stare watching them play together, thanking God for every minute!!
Health wise, Austin is feeling better than he has in what seems like forever. Without the side effects of chemotherapy, and without disease to wear him down, he is no doubt in the best shape he has been since his relapse. His hair is starting to sprout, I can't wait - but it looks like we won't see those curls for a while - he wants to keep it shaved. He's the boss, so brushcuts it is!!
We had clinic on Friday, Austin's counts are all fantastic. White count, hemoglobin and platelets are all in the normal ranges! We don't have to go back to clinic until this Friday, so that gives him four whole days at school, yahoo!
Friday we will do the blood work that is required before each round of Fenretenide and hopefully all is well and we will be able to start next Monday. He also has an eye exam booked as it is part of the protocol. One of the most common side effects of Fenretenide is loss of night vision. They like to keep their eyes (pardon the pun) on what's going on. Light sensitivity is also a common side effect, which Austin did experience last night. His eyes were watering and when I asked him what was wrong he said the lights were too bright, so we turned the big lights off and just kept a lamp on. It seemed to help. He also has very mild dry skin. Other than that, he seems to be doing just fine!!
That's about it for now, take care.
Love Beth
Hello everybody!
It was worth the wait to get Austin's test results back. For the first time in eighteen months, Austin's bone marrow aspirate and biopsy both came back negative!!!!!! Yes, NEGATIVE!!!! There was NO evidence of neuroblastoma in both sides. I am still not sure I believe it ?????? We're not out of the woods yet, but boy are we so close! Thank you God for listening to our prayers, you have given us so much hope!!
According to all of his test results, the only measurable disease Austin has now is his HVA/VMA markers (in the urine), which are still elevated. I have no idea why he would still be producing catacholimines if he has no evidence of disease???? I will be asking the doctor on Friday.
OK, the pills are done - all 140 of them!! Austin finished his last scoop of pudding today. I am so proud of him, he did such a total turn around, I can't believe a week has went by already. He tolerated his first round of Fenretenide with ease. I'm not sure how long the effects can take, but so far so good!! After some reassurance from the doctor in California, I am alot more comfortable squeezing the medicine out of the capsule. I was concerned about subjecting the medicine to light, but have been told it would take as much as 1/2 hour if not an hour before they would be worried about changing the formulation of the drug. From start to finish, it is taking Austin (& I) about 5 - 10 minutes to do "his pudding". The other concern I had was that I wouldn't be squeezing every last drip out of the capsule, or that we were wasting some of the med. I think if the Fenretenide is going to work, it's going to work. I estimate that we are probably wasting 1/4 pill out of 20 each day. I don't think we are jeopardizing the effectiveness of the drug, at least I hope not.
Thank you all for holding Austin in your thoughts and prayers. You have all been so supportive and we can't thank each and every one of you enough. We have been so blessed by our family, friends and community and the love you have all shown for our family. Thank you all!!
Love Beth
Thursday, April 18, 2002 at 10:56 PM (CDT)
Hello everyone,
Just wanted to say thank you for your messages to Austin. He has this little grin that only Austin could have when I read them to him. It means alot to him to know that people are thinking about him & routing him on!
Things are going as good as can be expected. Austin has continued to do his medicine without any fuss. We are hoping that squeezing the medicine out of the capsules will be as effective as him swallowing the pills. He has now done 3 1/2 days (69 pills) and so far hasn't had any side effects. His cheeks are starting to look flushed and his eyes are starting to look tired. He is in good spirits and still has an appetite.
Austin went to school yesterday and had a good day. He looks forward to going so much, I am so happy that he is able to go. When I ask about his day, he usually fills me in on everything he did at recess, I guess that's where all the action is! After school he was able to have his friends over for a while. Marky & Michael had already planned on a visit and a last minute visit was arranged with Christian, who lives down the road (on my mom & dad's road). We traded Amber off for him, she went to their house to spend time with Nicole, who is in her class. Aaron has a friend in his class just around the corner, so he was off to his house. It works out really good, Aaron can just cut across the field to get to their house, so I don't have to worry about him crossing any roads.
We had clinic this morning, Austin's counts were about the same as Monday, except for platelets which dropped down from 200 to 145. I'm not sure if this is from the Fenretenide or not, time will tell. We still don't have the results from the bone marrow asp/biopsy that was done three weeks ago. I'm getting a little impatient, but there's no real hurry as it wouldn't change anything right now anyway. I'm hoping to hear next week. His MIBG / Bone scans and his U/S remained unchanged.
Austin's plans for tomorrow include going to school. We'll see how he feels when he wakes up.
Love to all,
Beth
Thursday, April 11, 2001
Today Austin went to school for the first time in ages. He was very excited to be going and had a great day. I didn’t get a chance to tell you that last week Austin & I popped in on his class to say hello. I peeked my head into their classroom and all twenty kids raised their heads at the same time, looked so surprised and screamed "AUSTIN!!!!!”. They were so excited to see him. It so happened that they had each made him a card that morning, so they all circled around him to say hi and give him their cards. It was very
hard to hold back the tears, it was very touching. Austin’s classmates have been so understanding and they all love him so much. Anyways, he had a good day today and is looking forward to going tomorrow.
We talked about taking the pills again in the evening. We tried really quick to soften the capsules with warm water and putting them on a spoon with pudding. He tried hard, but still couldn’t do it. Last night I emailed a doctor in California who has / is very involved with the Fenretenide protocol. He is a member of our neuroblastoma support group and has offered help on several occasions. He is a huge asset to our group and we are lucky to
have him. He gave the OK to poke the pills and put them in pudding (or whatever). I gave Austin the lowdown, and he agreed to take his “pudding” in the morning before he went to school. Even after yesterday he still wants to try to find a way of taking his medicine. Have I told you lately how amazing he is??????
Friday, April 12, 2001
This morning Austin woke up at 7:00 sharp and was very anxious to make his pudding. We made the instant kind, so he got a kick out of pouring, stirring and mixing. He thinks he’s a real chef :-) After some thinking last night I decided to give Austin a much needed
boost this morning. Once his pudding was made, I took it away and told him I had to get the medicine ready to mix with it. He waited for me to come back and when I put the pudding in front of him, he gave it a taste and said “Now, this is a much better way” and downed the pudding and off he went to school very proud of the fact that he took his
medicine. I didn’t tell him that there WASN’T any medicine in the pudding, after all he looked so happy.
So now that he thought the pudding was no problem, tonight I hit him with the real thing. I squirted seven pills into some chocolate pudding. I also disolved the capsule shell in a small bit of hot milk and added that as well (hoping to get ALL of the medicine in). The medicine itself is oily inside, and bright yellow, so it takes alot of pudding to mix it with if you don’t want to change the look & consistancy of the pudding. His friend Marky was here so I thought it would be even easier to have the two of them together, maybe Austin
wouldn’t think about it so much. Marky started gobbling away at his pudding, and Austin put one spoonful up to his mouth and made his yucky face. He said it smelled bad and it took him forever to put his tongue up to taste. He tasted a teeny bit and said it was really yucky. He sat in front of his bowl for twenty minutes before I finally told him he could leave the table, and off he went. He said he would try again tomorrow.
ERIKA update: Erika has spiked a fever tonight for no apparent reason. She was fine one minute then the next she was burning up. We cuddled most of the night and after some Tylenol she fell asleep. We’ll see what’s up tomorrow.
Saturday, April 13, 2001
OK, I told him Mommy screwed up. I put TOO MANY pills in the pudding at once, and I tried to cheat and melted the capsules. That must have been why it tasted so yucky. So this morning, I squirted ONE pill into a tiny bit of pudding (any NO capsule). After
twenty minutes or more, it was obvious he wasn’t going to cooperate. So after some thinking, we decided to put some “yucky” pudding on the spoon and load it up with some “good” pudding. This morning we used lemon pudding. It took another fifteen or twenty minutes, a whole lot of pudding and a few glasses of milk, but he finally finished his first pill. YAAAAA!!! Only 19 more :-( So next I squirted three pills in, he did eat all of this one too - it took about an hour. Good start, so we rested for a while. In the afternoon, we tried again, this time I started with squirting six in. It took over 1/2 hour, and alot more pudding and milk and he finished about half. There was no way he was going to finish the rest. HE WAS DONE, no more .....
Tonight his belly was sooooo bloated from all the pudding and milk, poor guy looks like he swallowed a basketball. This obviously is NOT going to work.
ERIKA update: Erika’s fever persisted through the night, at times getting pretty high. The tylenol seems to keep it down and she has been in a good mood. She had a good nap this afternoon, but when she woke up she was so hot. I cuddled her for a while and went to put her down so I could get her some Tylenol. When I did, I noticed her hand was covered in hives. She started to break out in them on her face, arms & legs too. I didn’t have any benedryl in the house, so I packed the kids up and took her to Emergency down in Grimsby. Her ears and throat looked clear, so they figure it’s some kind of viral
infection. They didn’t give her anything for the hives, so I picked up some benedryl just in case it gets out of control at home. They sent me home with a script for amoxicillan and
told me to give it to her tomorrow if the fever didn’t break.
Sunday, April 14, 2001
Today we met Glen’s dad & wife in Niagara Falls for lunch. One of the parents of the nb group had to start giving his son oral chemo last week and found this “hiccup cup” that really helped him to swallow the pills. Our pharmacist tried finding one and finally did, but it’s only sold in the States. She ordered one over a week ago, and because it has to come through customs, it still isn’t here. So in the mean time, this very kind “dad” had picked
Austin up a cup and mailed one to Glen’s dad’s for us. It was a great excuse for the kids to see Grampie & Bonnie and it worked out well, the cup arrived on Friday. So off we went to find a “magic” way of taking his pills.
Lunch was soooo good, we had Chinese Buffet. Ummm, it was good. After lunch
Grampie & Bonnie pulled out the “magic” cup, and after having some fun with it Austin tried to use is to swallow his pill (that Mommy conveniently brought). It wasn’t happening, although he tried a few times, he didn't give it much effort. He said he would try when we got home which he didn’t because by the time we did get home it was too late to start all of this pill stuff
again, besides we both needed a break from it. It’s seems to be ALL we’ve been talking about for six days .... it’s definitely all I’VE been thinking about.
ERIKA update: Erika woke up with a temperature through the night, and a slight one in the morning. She started to break out in hives again (not as many) but they went as fast as they came. She stayed home with Nana today. Tonight I gave her some amoxicillan
since her fever doesn’t seem to be going away.
Monday, April 15, 2001
Today we had clinic. Austin’s counts are great, platelets are 200! Hemoglobin 110, and white count 3.2. He seemed very quiet this morning though, I couldn’t quite figure out what was wrong. I think he was nervous to go tell the doctor that we didn’t have any luck taking his medicine. I spoke to the doctor and told her that it just didn’t seem to be working. Austin is trying so hard and I’m out of ideas. She asked me to give it a couple
more days and we would talk again on Wednesday. I agree, I don’t want to give up so fast ...
While I was talking to the doctor, Jane the social worker took Austin for a walk and spent some time in her office. They took the pills and the hiccup cup and were going to see what they could do. They recruited Maria, the child life worker and together they talked
and tried to find a way to swallow these pills. They practiced on jelly beans, and Austin managed to swallow them after a few tries. He left with a good attitude, and said he would try swallowing the pills using the same method as the jelly beans.
On the way home he told me he didn’t want to swallow the pills, that he’d rather try it again with pudding. Chocolate pudding again. I told him no, we already tried and it was obviously not working. He really really wanted to do the pudding, so I told him if he
didn’t do it the first time, we would have to learn how to swallow the pills. I also told him that the doctor in California told me that it wasn’t the medicine that smelled and tasted
yucky, it was the corn oil that they use in the capsules.
When we got home, I squirted three pills into a tiny bit of pudding (without getting it all over this time) and got Austin ready to do it. He put the spoon to his mouth, closed his eyes and kept saying over and over ... it’s only corn oil, it’s only corn oil, opened his eyes
and swallowed. YAAAAA!!! It took five bites and he was done. I didn’t get too too excited because I knew he probably wouldn’t do the next ones. Before bed I did six pills and he did it like a pro!!!!!!!!!!!!!!!! We started teasing him saying it was going to take him forever, so we started timing him. I told him I could at least count to 30. When I started saying on your mark, get set .. he would have the spoonful gone.
So tonight he did 9 pills!! Let’s hope he keeps it up tomorrow.
Tuesday, April 16, 2001
6 PILLS THIS MORNING ...... DONE!!!!!!!!!!
7 PILLS THIS AFTERNOON ....... DONE!!!!!!!!
7 PILLS TONIGHT ............DONE!!!!!!!!!!!!!
ONLY FIVE more days to go ......................
YIPPEEEEEEEEEEEEE!!!!!!!!!!
P.S. Last Tuesday when we sat at the kitchen table for hours & hours, I had told Austin that if he did the first day of his pills that I would do anything he wanted me to, even if it was really kooky. Without even thinking about it (I have no idea why???) he said I would
have to take a bath with my clothes on. I told him absolutely I would, and he could even videotape it. He was thrilled since he is normally not allowed to touch my cameras.
True to my word, today I took a bath with all of my clothes on.
P.S.S. Erika is feeling much
Wednesday, April 10, 2002 at 02:37 PM (CDT)
Today Austin totally refuses to try to taking a pill. He is sad and is having a very quiet day. I am close to tears, I don't know what to do.
I am waiting for a phone call back from the clinic to see what we should do.
Will keep trying,
Love Beth
UPDATE:
We are going to give Austin a rest from thinking about these pills for a couple of days until the doctor can try to figure something out (whether or not we can squeeze the med out of the capsule, etc.)
I think I'll send him to school tomorrow & Friday and give him a much needed break from home. Will try the pills again hopefully on Saturday.
Tuesday, April 09, 2002 at 07:48 PM (CDT)
Hi everybody,
Well, after over SEVEN hours of trying to swallow his first pill, we called it a day and will try again tomorrow.
Austin & I sat at the kitchen table from 7:30 am to 3:00 pm, with only breaking for lunch and tried to figure out a way to get just ONE pill in. He was trying soooooo hard but it just wasn't happening. We tried just about everything. Austin of course was amazingly patient as I kept at him all day to keep trying. He had some pretty good ideas and he came oh so close so many times. He just can't seem to relax the back of his throat and that tongue of his just won't cooperate.
Now the encouraging part ... when the kids got home from school, I told them we were going to have a contest to see who could swallow a pill the fastest. I gave each of them a Flax Seed capsule, which is the exact size of these Fenretenide pills and told them there were no rules ... whoever swallowed it first won. All three had a big glop of Cool Whip on a spoon and buried the pill inside (Austin tried this umptine times through the day). It didn't take Aaron long at all to win, but Austin kept going even after he knew Aaron did it. He swallowed the cool whip leaving the pill, so he took a sip of water and bent over frontwards and swallowed. He sprung back up with a great big open mouth ... with NO pill! HE DID IT. He was so proud of himself, so we tried a Fenretenide pill repeating what he had just done. There was no way ... he couldn't do it. He even tried doing it again with a flax seed pill and couldn't.
SO, I know physically he can do it. So we will try try again tomorrow. Will let you know how it goes,
Love Beth
Monday, April 08, 2002 at 09:41 PM (CDT)
Hello,
Today was a good day. Austin & I talked about alot of things today and it all went very smooth ...
This morning on the way to the hospital we started to talk about New York and why we weren’t going to go there for medicine. Austin understands that the chemotherapy he needed to take to get the “medicine” could have hurt him. He understands that he still has cancer even though the doctors can’t even see it under a microscope and understands that he still needs medicine to keep it that way. He knows that chemotherapy kills cancer cells but he also knows that it kills good cells too. I explained to him that he has had so much chemotherapy that good things, like the way he uses sugar and like his blood pressure are good things that are getting hurt. He agreed that it would be smart to give his body a rest from chemotherapy.
I told him that today we were going to find out what the doctors had decided would be the best medicine to keep the cancer away without hurting the good cells. I told him they have been doing alot of homework to find a good answer. He corrected me the way only Austin would and said “Mom, doctors don’t do homework - they do research”, okay, fine - I have to remember I’m talking to Austin here - not just your typical six year old :-) I guess.
So he was pretty eager to hear what the doctor had to say today. Together we told Austin that he would be taking a medicine called Fenretenide. The doctor said she practiced all weekend to pronounce it just right :-) for him. I watched for his expression when she told him he could start taking his medicine at home and he wouldn’t have to have sleepovers. He was all ears now, he couldn’t wait to hear more. He even had a smile on his face. Among other things we told him, no more neupogen injections, no more (hopefully) blood transfusions, no more hospital food (WHEW - he liked that one) and also on the plus side that he could go to school more often and that his hair would grow back (he didn’t care about this one, he WANTS to be bald). It all seemed to be going so well until she mentioned that the medicine came in pill form. Ooops, he didn’t like that. He shook his
head no and said “I don’t want to”.
It wasn’t easy, but after a few chats here in there spread over the afternoon, Austin is pumped and ready to take his pills tomorrow. He knows that Daddy & Erika will be very happy that he and Mommy won’t have to have sleepovers anymore and he was very happy to tell Aaron & Amber the news when he got home. Now he knows that only very special people can take their medicine at home, and he thinks its funny that all the kids in the clinic will be saying “hey, how come AUSTIN gets to take his medicine at home???” He forgot that he took pills when he was four and was encouraged by the news that he could swallow three pills in less than one minute. He also knows that he can choose HOW he takes his pills, but knows he has no choice when it comes to taking it. He knows that it isn’t going to be easy, but knows that Mommy is here to help ... and together we can do anything!
He was tucked into his bed tonight as we chanted the words - you can do it, you can do it. He is psyched and (thinks) he is going to take these pills really fast so he can go to school in the morning. Okay, so I haven’t finished telling him about the pills yet. I didn’t see the point ... we’ll talk about it in the morning. He kept asking me how big the pills were and how many he had to take, I kept telling him ... we’ll talk about it in the morning. I did keep joking with him telling him they were this (arms spread way out) big, and he had to take 400 of them in one day. A bit dramatic, but maybe he believed me and will be relieved tomorrow??
We’ll see, look for an update soon,
Love Beth
Thursday, April 04, 2002 at 04:46 PM (CST)
Hello,
Just a quick update - Austin's counts have zoomed up considerably since Tuesday. We can discontinue the GCSF injections, hemoglobin rose to 94 and platelets are up to 50.
So this is it, Monday we will go back for blood work that is required before each round of Fenretenide. If everything is in the target range, he will begin the pills on Tuesday.
Oh boy, I'm so nervous but in the same time excited. I HOPE and PRAY that this will work.
Love Austin's nervous wreck mother,
Beth
P.S. A quick note to Nana - We love you. Thank you for being here for us - you are a very special person and although I don't tell you like I know I should - you mean the world to me & I don't think I could ever get through all of this without you :-)
Wednesday, April 03, 2002 at 08:27 AM (CST)
Hello,
Clinic was very uneventful yesterday. Austin’s counts have remained stable, his white count hadn’t changed dramatically so we will continue doing his GCSF injections and hope that they climb in the next couple of days. Platelets were 35, we’re not sure if this is still reflective of the transfusion he had last Wednesday or not, and hemoglobin is hanging in there at 89. No red blood transfusion was needed this time around which is good, but it also means he doesn’t benefit from the boost he would usually get. His energy level hasn’t been astounding, so I hope this will change in the next week.
I did get a chance to sit down with the doctor and discuss what the priorities for this
month were. Since the doctors change monthly in clinic, I needed to update her on what has been going on. I was very fortunate to have the same doctor in clinic for Feb / March, he was so thorough in sorting out our NY consult and getting the Fenretenide on the go. There are different advantages to having each one of the doctors (there are 5 of them) in clinic, so it was a big relief through all of the organizing that needed to be done that we were dealing with one who I was comfortable with “medically”.
Yesterday I voiced my concerns about Austin’s glucose problem. It is getting to be quite bothersome, and I want them to be concentrating on getting to the source of the problem. Fortunately again, this month the doctor in clinic is very compassionate about these things and agrees that we have to help Austin to “feel better”. She understands totally a mother’s grief over watching her son feel lousy. Although Austin hasn’t shown many physical symptoms of his glucose highs and lows, it is playing an emotional toll on him. He is constantly thirsty and hungry, and it is very hard to have to limit what he eats & drinks all the time. I already long for the days where it didn’t matter what & when he ate. I hope that we can figure something out soon.
The hospital implemented a new computer system yesterday, so understandably everybody was having a rough day. I couldn’t get results from any tests partly because they couldn’t figure out how. The doctor spent 15 minutes trying to pull up the results of the 24 hour urine test that was done on March 11th, and finally gave up. She will hopefully have some answers for me soon.
Today we are doing another 24 hour urine collection to complete the evaluation done last week. Although he had just done one on the 11th, she felt one closer to the scans would be more accurate for a base line before beginning the Fenretenide. This means we are back in clinic tomorrow to drop it off. Hopefully his counts have bounced up and he can discontinue the GCSF, which in turn will help his platelets zoom up :-)
I was hoping Austin could start back to school this week, but since he is busy “peeing in a jug” today, and clinic is tomorrow, it seems senseless to send him Friday. He hasn’t really been there since Christmas and hasn’t asked about going - so no big deal. He’ll get there eventually !!
Have a great day,
Love Beth
Monday, April 01, 2002 at 08:12 PM (CST)
Hi everybody,
Hope everyone had a nice Easter weekend. We spent the weekend with Dad & Bonnie in Rochester. It was good to get away for a couple of days and the kids had a great time. Luckily the Easter Bunny found the kids and left them loads of stuff to bring home. Of course he had to be creative this year since Austin shouldn’t have sugar - I think he did OK though, I didn’t hear any complaints!
Last week made for yet another busy one as Austin completed his evaluation in order to start the Fenretenide. Monday saw a bone scan, MIBG injection and a CT Scan. Wednesday an MIBG scan and ultrasound and Thursday a bone marrow asp/biopsy. He generally felt AOK all week, and once again was super having all the scans, etc. For some reason on Thursday after waking up from his "sleepy medicine" he experienced a headache which became quite severe around supper time. After a huge vomit, he felt much better. I'm not exactly sure what caused this bout, but will mention it tomorrow in clinic. I should hear the results of all tests this week and of course am praying for good news. Wouldn’t it be the best of the best if they said his bone marrow was clear??? Oh how I wish he didn’t have to go through all of this, it is sooooo hard.
Tomorrow we will go to have Austin’s blood counts checked. Hopefully his platelets
have started to climb a bit, he needed a transfusion again on Wednesday. Once they reach 50, we will be starting the new treatment. We still haven’t told him, but I think our talk is coming very soon.
Will update soon.
Good night,
Love Beth
Friday, March 22, 2002 at 02:04 PM (CST)
Hello everybody,
It's been a good week for Austin. He has felt good and has had lots of energy. For some reason I thought he would feel yucky after this chemo, I guess because he never did totally feel good after his last one. Amazingly he looks so well and now feels better than he has in over two months.
Monday's clinic visit was short & sweet, counts were all above the transfusion mark. Hemoglobin had barely dropped, 97 which is pretty good for Day 11 of a chemo. Platelets were hanging in at 19, and his white count was low as expected, he was neutrapenic. We booked an appointment for Wednesday but had agreed that if he looked and felt well enough, we would wait for Thursday to have his counts checked again. We enjoyed a visit with Kurtis & his mom who were there for tests.
Wednesday morning came fast enough. I did the once over and since there were no signs of low platelets, that is no bruising which he normally has when his platelets are low, we decided to wait until Thursday for clinic. Partly out of laziness and partly because if we went Wed. we would have had to go again Fri. This way, we would go Thurs. and Monday. He had a good day and still had a good supply of energy. We spent a quiet day together which was nice. At around 3:00, Austin was watching TV downstairs when he started a nosebleed. I wasn't sure if it was spontaneous or he had his little finger up his nose (no - he wouldn't be doing that - not Austin :-) ) After being interrogated, it is believed that the nosebleed was indeed spontaneous. It bled on and off for about an hour, so off we went to the hospital to check his platelets. Since it was after clinic hours, we had to make our first trip in three years to the emergency room. Sure enough, his platelets were only 4, so he definitely needed a transfusion. Because he was still neutrapenic, & since they weren't that busy, we were given the waiting lounge to be treated in which wasn't so bad. Austin said he felt like he was in a hotel room - hope he didn't get too used to it! I can't imagine that it would always be that way. Anyway, what usually would take a couple of hours took five hours - but he got his platelets and off we went. We didn't get home until 11:30pm.
So as it happened, we needed to go to clinic today anyway. Hmmm, that was poor planning on my part! Todays counts were really good, white count has climbed up quite nicely, hemoglobin still up there at 98, and platelets were a whopping 64, of course this would be reflective of the transfusion of Wed. night. He had a good response, I'm wondering if it was because the platelets he got were from a single donor. Usually the bag of platelets he gets are from three or four different donors. I've noticed before that single donor platelets seem to give him a bigger boost. So no transfusions today, his counts were good and no doctor check up was needed, so we were clear for the day! We hung out for a while with Ashley & her mom and then did some much needed running around. Austin rented a Play Station game and is now very busy checking it out.
We have scans and bone marrow asp/biop. next week beginning on Monday. Once again, a very busy week in store. These tests are necessary before starting the Fenretenide - please include Austin in your prayers for good results!!
Have a good weekend, will update soon,
Love Beth
Saturday, March 16, 2002 at 07:45 PM (CST)
Austin has had another good day, he looks and feels good. His sugar levels have been good today as well. Aaron had his end of the year hockey party and Austin really wanted to go. I was a bit nervous about having him out with a group of kids but didn't have the heart to say no. So we all went, and all had a good time. His white count (immune system) should be bottoming out this weekend, so that's it for his social life for a while.
I continue to think of ways to introduce these pills to Austin. I definitely know that we won't be telling him until the day the pills come home. I really don't want him anticipating them, I know all too well that medicine taking is not his strong suit. From what I understand the pills are gel-capsules. They are very similiar to the Accutane that he took two years ago, except much bigger. The drug is light sensitive, so cannot be squeezed out. He could probably chew them first, but I imagine they taste horrible.
They will be given three times a day for seven days followed by a two week rest period. I still don't know exactly how many he will have to take, but from reading about other kids taking it, I estimate he will have to take at least twenty pills a day. I have posted to the neuroblastoma listserv to see if there are other kids Austin's age taking this pill, but only got a couple of replies. A doctor on the list suggested soaking them in warm water for 15 minutes to soften them up, and giving them on a spoonful of chocolate pudding. He is one of the doctors' conducting the study and is well aware of the difficulty in administering the pills. He and others are trying hard to find better ways, I wish they would hurry ...
The most serious side effects seen with fenretinide, which are usually reversible when the medication is stopped, but occasionally can persist and can cause serious complications include:
1. Loss of night vision including difficulty adjusting to dark and light conditions.
2. Skin rash or irritaiton, itchy dry skin, dry eyes & dry chapped lips.
3. Increased pressure in the brain which usually causes headache and may cause changes in vision.
4. Elevated fat components of the blood.
5. Abdormal function of liver.
6. Muscle aches, joint pain, arthritis.
7. Headache, light headedness & dizziness
8. Nausea, diarrhea, abdominal pain.
Fenretenide is classed as chemotherapy so general complications of cancer chemotherapy can occur as well.
Not everybody will experience these side effects and certainly every situation is different. These are very mild compared to the side effects of drugs that Austin has already experienced or could have / could still experience.
Thanks for checking in,
Love Beth
Friday, March 15, 2002 at 01:41 PM (CST)
Hi everybody,
Austin is feeling amazingly well, I should learn not to assume anything. He totally changed pace once he came home from the hospital and has kept himself busy since.
Wednesday he kept busy outside in the yard and yesterday he had his two friends Marky & Michael over for the afternoon. Last night we went to Disney On Ice at Copps, it was good. The kids enjoyed themselves and it was good to get out of the house. Marky came along - it was good company for Austin, I think that he enjoyed himself alot more with his "friend".
Today we had clinic and are home early enough to enjoy the rest of the day. Austin's counts were all in good ranges, no transfusions today. He will be back again on Monday to check.
We got news yesterday that Austin has been approved to start Fenretenide. Because this drug is still in the experimental stage, it had to be applied for use under a compassionate basis. Oral fenretinide has completed the phase I study in
children, and a phase II study is in development. We are fortunate that while these
things take place, a very kind physician at the NCI (National Cancer Institute) has been allowing appropriate patients to receive fenretinide on a compassionate basis. It is not the norm for getting an investigational drug (as we have with fenretinide) on a compassionate basis.
There are strict rules for this and no amount of arguing will change these rules, they are set in stone in the NCI system. We are fortunate that Austin falls into these criteria and has been approved to receive this drug. We are now waiting for the protocol to be presented to our Ethics Board in Hamilton and once approved by them will get the drug. They figure some time next week.
Austin will need to recover from this round of chemotherapy before he begins this protocol using Fenretenide. We figure this should take about four weeks to achieve. This gives us time to come up with some innovative ways to administer this drug. As mentioned before, these pills are huge, and he will have to take around 24 of them a day. We are up for the challenge. Instead of assuming he can't, we have committed ourselves to try - so we need all the positive energy you can muster up - and please send it all this way!! It should be interesting, but I am excited at the thought of it working. The protocol itself runs about 6 months (8 courses). If he achieves a complete response (no more disease), he will stop. If he still has stable disease, he can continue for up to 22 more courses.
I guess this is where I explain what our hopes are for Austin in the future and how "The Austin Davis Trust Fund" still plays a major role in his treatment. The Fenretenide is at best to buy us some time. Hopefully (lots of prayers please) it does it's job and holds the disease stable or better yet gets rid of the remaining cancer cells. It is still our intention to find an immunotherapy trial that suits Austin's needs, whether this be in the US or whereever. Lots of things can happen in the next few months, good or bad, and we want to be prepared for anything. It is has been overwhelming to have received the support we have and are now able to jump on board as soon as something suitable opens up. "The Austin Davis Fundraising Committee" will continue to fundraise (on a smaller scale for now) so that we are financially able at any time to get the necessary treatment available. To clear the air about the amount of money in the Fund, there is presently $115,000 (Canadian) in Trust for Austin. This Fund will stay in Trust to Austin for his lifetime. If you are interested in any information regarding this Trust Fund, please contact me and I would be glad to discuss it with you.
I know that my journal entries sometimes jump all over the place, so please ask if there is something that is not clear. I would rather answer a million questions than to have someone totally misunderstanding our intentions for Austin. What seems clear to me might not always make sense to someone else. This journal has been great therapy for me and I would like to continue to share Austin's story with you.
Have a good weekend,
Love Beth
Wednesday, March 13, 2002 at 01:31 PM (CST)
Hello everybody,
Hmmm, I just looked at the date today - it has been 19 (NINETEEN) years today that Glen & I first met - WOW.
Well, we're home - finally. Ironically the delay in admission last week was to prevent the risk of Austin catching the "bug", which he in fact got the night we were admitted to the hospital. He was feeling fine when we left home but had woke up through the night with bad diahhrea and vomitting the next morning. He spent most of Thursday with fever and an upset belly. The chemo had to be delayed until he was feeling better, which ended up being Friday. Luckily it was only put off one day. He was placed in isolation for the week because the ward is still FULL of virus of some kind. Every other door had an isolation notice on it. Austin wasn't allowed to leave his room and visitors / nursing staff were required to gown and scrub before entering & leaving his room. It didn't seem like anybody was actually following these rules, probably the reason the ward is in such a terrible mess. Austin didn't break any laws, he was a good boy :-) and stayed in his room for six days without leaving.
I'm pretty sure that Austin was free and clear of "the bug" the next day, but he continued to have diahhrea, the same he's had for the past month. If it continues through this week, it has been suggested we consult with a GI specialist. We'll see, so far today, so good.
The five day chemo went alright. No nausea - which was a blessing, he actually had an appetite, although he wouldn't eat anything from the hospital. He has now refused to drink the "hospital's milk", so there goes the morning cereal that was a sure thing while inpatient. We managed to keep him fed with snacks here and there. His glucose was up and down and all around again, so we continue to monitor that. So far today, his counts have remained level. His blood pressure had some of the nurses' heads spinning. One blood pressure was 200 something over 130. This would normally send alarm bells out, but because our Austin is such a wonder, we instead get puzzling looks, heads shaking in disbelief and sometimes the odd giggle. They are so stumped by his blood pressure it has everybody guessing and nobody coming up with answers. A couple hours after having such an enormously high blood pressure, it actually went too low. They have notified the nephrologist once again, but I'm not sure he is going to have anything new to add since the last consult.
His six day stay was long and pretty uneventful. He had two little visitors (& one big one) :0) on Friday night which made him very happy. They had a good time playing and they kept Austin's mind off everything for a night. He also had a Nintendo playmate on Saturday which he thoroughly enjoyed! Other than that we just basically hung out watching movies and playing video games. We are SO running out of things to do there. It is good to be home!!
Austin is feeling good today, well enough to go to Aaron's hockey game this morning. Last game of the season :-( It is so beautiful outside the kids have been playing in the yard most of the day. Hopefully the weather holds up, it always is a boost for Austin to be outdoors!!
Take care everybody,
Love Beth
Wednesday, March 06, 2002 at 08:24 PM (CST)
Hi everybody,
Austin & I are leaving for the hospital tonight to start his chemotherapy tomorrow. He will be home on Monday if everything goes well. Will try to update from the hospital.
Yes, we feel better knowing there is a plan of action. We are now focused on the next few weeks hoping that he does well through this round of chemotherapy.
Take care,
Love Beth
Wednesday, March 06, 2002 at 06:54 AM (CST)
Hello everybody,
We are still home on stand by as to when we will be admitted for another round of chemo. The ward still has a virus going around and the doctor wants to be sure we are not putting Austin at risk. They are waiting to hear back from Infectious Diseases regarding the strain of bacteria. There is also a shortage of nursing staff & doctors. I hope that we are able to go in tonight because it has been way too long since Austin has had a chemo (6 weeks now).
When the doctor called yesterday he had mentioned that he heard back from the NCI (National Cancer Institute) already and it might be possible to have the Fenretinide available in the next 24 - 48 hours. He thought it would take a couple of weeks. I'm not sure if this means he wants to start Austin on it without first giving him this last chemo. I'm very nervous about doing that. I will have to wait until I get his call today to discuss it.
Will let you know,
Love Beth
Monday, March 04, 2002 at 10:06 PM (CST)
After a very long weekend antagonizing what the doctor's had discussed in their Grand Rounds meeting on Friday morning, we met with our oncologist today to discuss their decision with regards to the information they had received via NY about Austin's treatment plan.
Let me start by telling you that the summary they received from the doctor in NY began with the suggestion of entering Austin into a Phase II study using Arsenic. This being the protocol I had mentioned in my earlier post. We had discussed this some with Dr. NY, and have definite reservations about it at this point in time. In saying that, it had also included a brief low down on how he sees Austin's case history. He mentioned that Austin is unique in the amount of chemotherapy he has seen in any child. He included the protocol for high dose chemo that would be necessary to administer before antibodies could begin. He also mentioned that if the parents "wanted to go for broke" he would enrol Austin on the antibody study.
With this information and that of my own, together as a group they discussed what action should be taken. After very careful and thorough consideration, they feel that the chemotherapy being suggested by Dr. NY is way too toxic for Austin to tolerate. We spent a good hour listening to the reasons behind their decision. Their care for Austin is genuine and we respect their decision as a group and feel it has been made in Austin's best interest.
The pharmacist went over the doses being recommended. It was calculated that the Cyclophosphamide was at least three to five times the dose Austin has received in the past, with the added chemotherapy agent "Ironotecan" which Austin has never seen before. It is fact that it takes Austin five weeks to recover from a low dose chemo and is unreasonable to suggest he would recover within the four week span Dr. NY is assuming he will. They are very worried that the toxicity of this chemo would be life threatening to Austin and all agree that they aren't ready to see that happen in the next four / five weeks. The biggest risk is infection and it is very real, other risks involve organ damage. Those are major issues, there were several other issues we discussed, but too many to repeat tonight.
I know that NY has been talked about alot and I know that some have understood it to mean a cure. It definitely is not a sure fire thing, in fact, Dr. NY said there was only a SMALL chance that Austin could respond to it's treatment. Given these odds we all agree that we are not ready or willing to lose Austin in the next couple of months.
So with that understanding, and with our permission, the doctors will be enrolling Austin into a Phase II study using a drug called Fenretinide. This will take a couple of weeks to complete the administration required, so in the mean time Austin will be admitted tomorrow night for another round of low dose Topotecan / Cyclophosphamide. These steps have also been carefully thought out and talked about and we have agreed to give the Fenretinide a chance to do it's thing. If in any way Austin does not tolerate it or does not respond to it, we will discontinue it immediately and move on to something new. We have all agreed that Austin needs constant monitoring and we will be doing a bone marrow asp/biopsy every 6 weeks to make sure the disease doesn't progress while trying new agents. FYI - the Fenretinide is an oral drug and can be done at home. It is very possible that this drug can keep Austin stable (in a partial remission) for an extended period of time. Some children have been on it as long as 18 months or more. It is our hope that he will remain in good health until the COG hu14.18 antibody study enters into a Phase II study. (OK, another lesson for another day).
There has been so much discussed in the last week that I feel like I'm giving it to you in bits and pieces. I guess the important thing is that we are comfortable with the decision that has been made. A little part is disappointed in not proceeding with the treatment we have dreampt about for a year, a big part of us agrees with everything they have concluded about this treatment and a little part is almost relieved that they have made the decision for us. We trust in the care that Austin is and has received from our doctors here at home. They have invested alot of time and interest in Austin and only want what's best for him .... can't argue with that !
I will be confirming Austin's admission for tomorrow night as it is possible there will be a delay due to a serious viral flu bug going around the ward. I was told today that Infectious Disease Control might have to shut the ward down until it is under control. Some children, parents and nursing staff on the ward have all been hit with this flu. In fact, we were on the ward last Friday visiting friends and that night Erika was up all night vomiting with fever and diahrea. It's likely she caught it there. Not a good scenario for our onc. kids, I hope it resolves quickly.
Will update soon,
Love Beth
Wednesday, February 27, 2002 at 10:11 AM (CST)
Hello everybody,
I didn't realize it has been so long since I last updated. I know you are all standing on the edge of your seats to see how our consult in NY went, thank you all for being so supportive.
In keeping with my journal entries, first an update from last week (if I can remember that far back).
The sugar levels have calmed down somewhat. We are still monitoring his blood glucose amounts throughout the day. It seems Austin is very sensitive to what he eats, so we have been keeping a very close eye on his diet. He has learned all about carbohydrates and protein, and when and why he should have either / or. This makes it alot easier to plan his meals. For the most part he is experiencing one high number a day, followed by one low number. Aside from that the rest of the time his numbers seem OK. There is still no definite pattern or predictability, so I will keep on doing what we're doing. We haven't had to give him insulin since my last update.
Tuesday the kids had a dentist appointment. Three cavities for Austin and some repair work to Amber's back molars (she has no enamel on them). Since we are in the midst of a potential high dose chemo, I had asked if Austin's teeth could be filled sooner than later since this could be a source of infection with low immunity. Luckily they could fit him in on Wednesday afternoon and all is fixed. There were three teeny holes, if under different circumstances he wouldn't have even filled them. One didn't warrant a filling and the other two could be done without freezing. Austin handled his dentist visit wonderfully and wants to go back every day. What a kid :-)
Thursday morning we were back in clinic for an unscheduled bone marrow aspirate / biopsy. They called on Wednesday to book him in so that they could send NY the aspirate. Austin's counts were all good and the procedure went off smoothly. The doctor in NY had requested the bone marrow be checked in four sites (front & back hips), but after discussing this with our docs here in Hamilton it was decided that they would only do two, as per their hospital policy. This was fine with me - the aspirates were Fed-Ex'd that afternoon. I still haven't heard back any results.
Friday morning Austin's back was bothering him a bit so he stayed home from school. It was just as well, there is so much going around at school I think half of the kids ended up with the flu last week, Amber included. Friday night she was not feeling so great, lots of vomiting. She woke up Saturday feeling better, and so far (knock on wood) nobody else in the house has caught it.
Sunday we spent the day at home preparing for our trip to NY. I spent most of the day very nervous and at some point I think I might have even experienced a mild panic attack. Once everything was packed and ready I felt much better and even managed to get a good sleep. We left early morning Monday (5:30am), made a few stops along the way and reached the Ronald McDonald House mid afternoon. It was a great drive, very scenic through Pennsylvania. The route was easily followed and surprisingly we made it there without getting lost :-) The Ronald McDonald House is in walking distance to the hospital, and AMAZINGLY we got a parking spot on the street right outside the House. The chances of that happening again are probably next to zero. We checked in and spent the rest of the afternoon walking. There were no shortages of restaurants to eat at, so after a so-so meal, we headed back and settled in for the night. We took a quick look around the Ronald McDonald House and Austin seemed to like what he saw. He especially liked their playroom and all the arcade games in it. He couldn't believe how "cheap" they were - you didn't even have to pay money to play them!! :-) All in all it looks like the Ronald McDonald House would be very Beth and Austin friendly.
Tuesday morning we went out for breakfast and then headed over to Memorial Sloan Kettering Cancer Centre. It was very impressive from what I saw and everyone there seemed so kind and caring. Our meeting with Dr. Kushner went well and he was kind enough to spend a good chunk of his time with us without making us feel rushed at all. Most of what was talked about was nothing new, he had looked over Austin's records and agrees that he has seen ALOT of chemotherapy. We discussed the monoclonal antibodies and the preparation for receiving them, which would include high dose chemo. It is agreed that we would be financially unable to administer this chemo in NY. Unless we can get OHIP to cover it or get Hamilton to administer it, we will not be able to move forward with the antibodies. We are not giving up hope yet, we are hoping that the doctors in Hamilton take Dr. Kushner's recommendations to have the chemo done at home. So more waiting ....
Dr. Kushner also recommended another agent that is given as part of a Phase II study that they were doing there. He seemed pretty passionate about it and thought Austin would be a good candidate for it. I haven't read or heard too much about the study he is doing but will definitely feel it out. It was kind of sprung on us so fast that we need more time and more information. It is a two week on and two week off protocol lasting for six months. It is done on an outpatient basis and can only be done at MSKCC.
I will update you more once I have spoke to our oncologists here at home. We continue to go around in circles, so much so that we are getting dizzy. Hopefully we can get off the merry-go-round soon and move forward with a definite plan.
Until then,
Love Beth
Monday February 18, 2002 9:09 PM CST
It's been somewhat crazy in the world of Austin lately, I only pray to God that things get better and we find the answers we are looking for.
After Saturday's dose of insulin, Austin stopped making ketones fairly quickly. The rest of the day saw it's ups and downs. After the insulin had worn off he once again was experiencing high numbers (12-14) after supper. This lasted a couple of hours, but thankfully he was not making ketones. He went to bed with a high number so I checked once more and was ready to page the doctor if he showed one more high, but instead his number was very low (2.7) so I had to wake him up to give him juice. He was very sleepy and it was difficult to get him to sit up and drink. It took a bit but he finally drank some juice. He went back to sleep and I checked him again twenty minutes later and found that his number was even lower (2.3). I tried desparately to wake him up to have some more juice but he just couldn't sit up. When he finally got up he would flop back down and tell me he just couldn't. I offered him some pop thinking it would get his attention, which it did slightly - but try as he might he couldn't sit up to drink. I finally got him a straw so he could lie down and drink but instead he mustered a bit of energy to eventually drink 1/2 a cup of pop. Twenty minutes later his counts came back up to 5.9 and I breathed a sigh of relief.
I paged the doctor to let her know what kind of night he had, and after a good discussion decided it was best not to give him insulin the next morning. As it stands now, I am monitoring his levels, treating him when it's low and will administer insulin when there are ketones present.
Sunday was about the same, he had one high level after lunch (15.7) and two low ones after dinner. No ketones, so I didn't have to administer insulin, but I did have to treat the lows (2.8, 2.9) He wasn't experiencing any signs of low sugar so it was much easier to treat. He spent the day with his friend Marky and his brother who is a year younger. Marky & Austin get along so good together, they are so adorable. Marky is Amber's friend's little brother. Since September Austin & Marky have become pretty close, lots of phone calls, they play at school and they go on the same bus. Austin wants to adopt him :-)
Today was a pretty busy day. We started off the morning with some blood work ordered by the nephrologist (kidney dr.) This required a poke in the arm - Austin of coarse was so good. His arm took a beating though, he's got a pretty good bruise where the blood was drawn. After the blood work, we headed upstairs for an echocardiogram. This was scheduled as part of his regular workup a few weeks ago but had to be postponed because he was needing transfusions that day. The test went fine, but to make everything a little more interesting Austin's blood pressure was pretty high as she did her routine check. (161/97). From the echo we headed over to the clinic to check on his counts (oh ya, remember them??) I got the nurse to check his blood pressure again and it was (185/117), hmmm.
Counts are great, platelets are up to 105, hemoglobin 110. This means if we weren't headed to NY for a consult next Tuesday, Austin would be going in to hospital tonight to start chemo tomorrow. I am a little (OK, a lot) nervous that we are postponing his chemo, but the oncologist assured me that one week won't make a difference, hmmm.
Things are in motion as far as getting all the records gathered together for the doctor in NY. I am hoping that they have everything by Wednesday so they will be there in plenty time before we are, hmmm. I had a good talk with the oncologist and he has been so supportive of our decision to consult with MSKCC. He gave me a little pep talk and wished me luck. He is very anxious to hear what we come home with.
Still no answers on all the strange goings on. They don't think it's disease related because it is not constant. The general concensus is that it is treatment related. My hope to God is that these problems are temporary and cease when chemo does.
Off to the dietician to go over some sort of meal strategy for Austin. She really didn't want to constrict Austin's diet, so she suggested ways of combining foods to hopefully even out the glucose numbers. This probably won't help, but it definitely won't hurt. Her opinion was that he is in the beginning stages of Type 1 Diabetes. She was very informative, and Austin participated fully with our meeting. He understands sooooo much.
Done with the dietician, over to the nephrologist. Had a good discussion with him with regards to Austin's kidney function. After looking over blood work and figuring out Austin's creatine clearance, he has given Austin's kidneys the AOK. He doesn't see any reason why we shouldn't go ahead with a high dose chemo and remarked that Austin was in fine form! Good news :-) We discussed the high blood pressures again, and again he cannot explain them and definitely does not want to treat the problem. He gave me a few pointers on what I should be asking NY and we also discussed the high sugar levels. He mentioned to me to be very cautious about administering insulin and that one test showing ketones doesn't necessarily warrant an insulin treatment. He suggested waiting a while to see if the ketones clear on their own without intervening with the insulin. Again - I've been given information I can't ignore - I will discuss this with the endocrinologist and suggest waiting a few hours after seeing ketones before administering the insulin, hmmmm.
While in the clinic today I noticed the nurses were wearing the face that I have come to know all too well. I knew as soon as I walked in that something wasn't right. I was called over to the side by a mom who told me that she had just lost her beautiful baby girl this morning. She was four days older than Erika and the sweetest little thing. She had leukemia and was very sick the last few weeks. Please say a prayer for Carleigh, her parents and her four year old sister. Tonight there is yet another bright star shining above us.
God Bless,
Love Beth
Friday February 15, 2002 6:21 PM CST
Austin has had a much better week, he is feeling and looking alot better. Thank God.
Tuesday's clinic visit found Austin's counts recovering nicely. His white count was high enough to discontinue the neupogen injections. Hemoglobin was good, and platelets have started to come up.
After talking over Austin's glucose situation with the diabetes nurse, we are once again just "monitoring" his sugar levels. The insulin that we had used for three days was a long lasting insulin. The idea was to give him a little boost in the afternoon and evenings to help with those "high" counts and level them out. With the smallest dose of insulin Austin experienced "low" numbers which in fact is more dangerous than having the odd high one. There is another type of insulin - fast acting - that can be
given before meals, but since it is unpredictable at this point to tell when he will skyrocket, it is very risky to give him insulin when he doesn't need it. So for now I am monitoring his levels and what he eats to see if there
are any patterns. So far I see none. His levels have been alot better than last week, he has had only a couple higher ones but not nearly as high as last week. I am meeting with the dietician on Monday to discuss Austin's eating patterns.
A consultation has been confirmed with Dr. Kushner at Memorial Sloan Kettering in New York for February 26. Austin's records are being put together and will be forwarded to him sometime next week. Glen and I aren't sure how we are going to get there yet, we are thinking about driving. That may change though. I am so ready for this meeting and Glen & I are so thankful that we have an opportunity to meet with him. Without the support of our family, friends and community this
wouldn't be an option even worth considering. If the doctor feels that Austin is suitable for the treatment and
Glen & I feel that they are suitable to treat Austin, we are going to have to come up with the deposit required quickly. They won't start treatment until we are financially cleared, until then we are going to concentrate on our
meeting.
So that's what been going on medically. On the not so medical side, Austin has enjoyed four whole days of school this week! He had a lot of fun on Monday
celebrating the 100th day of school. He was very excited about Valentine's Day. He breezed through filling out all of his cards, and he even remembered all
the kids names in his class (he forgot his list at school). Pretty impressive seeing as he isn't there much. Since
his platelets are on the rise he enjoyed playing outside at recess. Aaron has started the playoffs, they have lost
their first two games. Unless they win the next few it looks as though his season is over. Too bad, it's a great
escape for me!
Last night we took Aaron for a hair cut (a much needed one). While we were sitting waiting for him Austin informed me that he too wanted his hair cut. Unlike Aaron, I didn't think he really needed one but asked the girl if she could do something for him. He has had fuzz for a little while now, but this time around it started falling out so it was getting patchy. I was a little sad that he wanted to get rid of what little hair he had, and kept asking if he was sure. Well he was, so he got shaved.
Surprisingly it made a big difference and it freshened him right up :-) He always knows best!!
Have a good weekend,
Love Beth
Saturday, February 16, 2001 @ 2:00pm
Austin's sugar levels went very high before lunch, and after checking his urine and finding ketones present, we had to inject some "fast acting" insulin as prescribed by the doctor we paged. She would like Austin to have one unit of the long lasting insulin tomorrow morning. Drat, I thought it was getting better ...
Monday February 11, 2002 7:32 AM CST
Hello everybody,
It has been a weekend full of ups and downs for Austin. I wish I could wrap my arms around him and make this all go away.
Friday we started insulin. It is a very small dose (2 units) and he does it in the morning before breakfast. It is slow releasing so it starts to work in 3 - 4 hours and peaks at 8 -12 hours. Because we've been monitoring his sugar levels for the past two weeks, we have noticed that it is higher (too high) after supper, as well as little ups and downs in the afternoon.
We were both kind of nervous doing his insulin the first day. He chose to do it in his belly and I had a really hard time the night before anticipating the "poke". We got through it OK, and Austin went to school. His blood sugars were good at lunch time and before supper had went a little low. We gave him a quick drink of pop, and had supper which put him back on track. Friday night we had visitors, so the kids were running around crazy for the night. It was quite late and obvious that Austin was very pooped out. He got pretty stubborn not wanting to go to bed until the other kids did so he fell asleep downstairs at about 11:00. When it was time to bring him upstairs, he woke from his sleep in a total freak out. It reminded me of when he was first diagnosed (on dexamethasone - a steroid) and he used to get this scary look in his eyes and scream, kick and cry. I had to give him his neupogen before he went to bed and for the first time in three years he kicked and screamed and wouldn't let me do it. He kept yelling at me that I was hurting him, and leave him alone. He was out of control, it was very scary. After I finally got the neupogen in, I had to do his fingerpoke because I didn't know why he was behaving like that, I wanted to be sure he was OK. Well his blood sugars were very high (24) so I had to check his urine for ketones. All this while he was still freaking out, (not to mention by now that Erika and Aaron were both crying too). No ketones, but I decided to page the doctor anyway. She said he would be fine and to get some sleep. Ya right. He finally settled, gave me a big hug and went to sleep.
He had a much better day on Saturday, but still he looks so tired. I have seen him look so much better at this time after chemo - I don't know what to do for him. His blood sugars were all good except the one right before supper. Too low, so we gave him a drink of pop, and it was fine. The doctor changed the insulin dose to one unit to see if that would make a difference at supper time. One unit is like giving him two drops, it is a very very tiny amount, kind of not even worth the poke.
So with one unit yesterday, his counts were all low. He woke up too low so I gave him some juice before his breakfast which helped. His before lunch was OK, but before supper was very low. After some juice and his supper, it went up a bit so he was fine. An hour later he curled up in his bed and fell asleep. When I realized where he was, I quickly checked his sugars and again it was too low. I had to quickly get him some juice to drink, after he did he popped back out of bed and started playing like nothing happened. I checked again in 15 minutes and it was still low, so I paged the doctor. She said to give him his bedtime snack and he should be fine. She also said not to give him insulin today and see what he does. She is stumped - I hope we find answers soon.
As you can imagine our world has been consumed with "Austin". I see a difference in the other kids, they are all craving attention. Our minds have been full and to try to achieve what you set out in one day is almost impossible. I am trying to sort out this NY thing, today I will find out if we can wire enough money for a consult - without having to wire the full $210,000. If so, I will try to do that today so that hopefully Glen & I can go meet this doctor and discuss Austin's history and get a feel for whether he thinks Austin is suitable for the treatment.
I can't wait for clinic tomorrow to try to get some answers on why he is feeling and looking the way he does. His eyes have been puffy and bloodshot, he is very pale and sluggish. I will request a consult with the nephrologist tomorrow and ask that a kidney function test be performed. I don't know what else to do.
As for Austin today, he woke up looking much better and away he went to school. Today marks 100 days at school for the kids, so the grade ones were having a party. Austin was very excited to be going. They had to bring 100 of something to school today, so Austin packed 100 cars into his back pack and struggled with them to get to the bus. I'm guessing that Austin doesn't realize that he has only been to school maybe 30 days of the 100.
The Welland Tribune is coming today to cover a cheque presentation from the Niagara Catholic Teachers Union. For those in the area, I imagine it will be in tomorrow's paper.
That's about it for now,
Love Beth
Wednesday February 6, 2002 4:57 PM CST
Hello everybody (THIS IS A LONG UPDATE)
We have met with our doctors (once again) about Austin’s next step in treatment. We have gone through everything over and over in our minds to come up with a reasonable form of treatment that might benefit Austin with his condition.
After one long year of battling this monster inside our baby, we have finally got to the
point of minimal disease. He has miracuously survived odds and stands before us today with a happy healthy mind and body almost free and clear of what has haunted us for three years. It would seem that now would be the time to rejoice, but instead we are faced with a more than ever difficult situation.
Austin has withstood 21 rounds of chemotherapy in the last three years. It is clear to Glen & I along with his doctors that his body is tiring. He is showing signs of stress and to continue with this form of treatment could cause more harm than good. That is something we all agree on.
There are two paths to take when deciding on a treatment plan - one being an aggressive approach with the goal of eradicating disease, or one of less aggressiveness hoping to buy time and provide Austin with some sort of quality of life.
One treatment option for Austin is using Fenretenide. This is an oral drug that could be done at home. It is very similiar to the Accutane he had taken for six months after transplant. The drug is very low in toxicity and has minor side effects and is best used when there is minimal disease. It is possible that this drug could keep Austin stable for some time, (some children - very few- have successfully taken it for over 18 months). Of course this comes with no guarantees, it is possible that he might not respond to the drug and begin disease progression. It is a drug that has been tested in a Phase I study allowing them to determine what dose was tolerable in children. It hasn’t become Phase II yet, but should be soon - this would study the response children would have. It is possible to apply for the drug on a compassionate basis and is possible to get the drug at home. Sound good? Well there is one draw back - the pills that he would have to take are HUGE. I have been told that they are an inch long! Just like the Accutane, they would have to be swallowed whole. Some of you might remember the problems Austin had taking the Accutane pills which were much smaller. Still sound OK? Now consider what
it would be like if he had to swallow 24 (that’s TWENTY FOUR) of them a day. We
have seriously considered this and actually gave the go ahead, but for whatever reason paper work hadn’t been started. We have now reconsidered and think it is unreasonable for Austin to take such large pills in such large numbers. Our whole day would be consumed with pill taking and would definitely alter his “quality of life”. We have serious misgivings about Austin’s ability to take these pills. They are working on a way to administer this drug to children without the obvious disadvantages. Hopefully they do soon!
There are a couple of Phase I and Phase II studies being done here at home (Ontario). A Phase I study being done in Toronto to determine the tolerable dosage of using Celebrex combined with an oral chemo. Personally I know four children who have entered this protocol, and all four of them have since passed away. I’m not convinced that there is anything to suggest this could benefit Austin.
There are a couple of Phase II studies that use different chemotherapy agents. As I
discussed before, we feel that Austin is at the end of the road as far as chemotherapy drugs.
That is about it for what is available for him here at home. We could continue to use the Topo/Cyclo (chemo) combination, but we don’t know how much longer he can endure such treatment. Even if we were to achieve remission, we know that he wouldn’t stay that way with no other further treatment, and it would be nearly impossible to expect that he could endure chemotherapy for a second relapse.
That brings us to our other option. Immunotherapy. There are two antibody studies
being done right now for recurrent neuroblastoma. One is a Phase I study to determine the tolerable dosages in children using an antibody called hu14.18 combined with Interleuken 2. This is part of the Children’s Oncology Group (COG) and is being administered in four different hospitals in the U.S. I believe they are enrolling 24 kids on this study in the next year. There are so many children applying to get on this study that they have adopted a lottery style way of picking which ones actually get to participate. The chances that Austin could get on this study are pretty slim, probably not even an option because we are from Canada. I am hoping that this Phase I hurries along and a Phase II can open in a hurry so that more children can benefit from it. It is unpredictable how long this could take, it would depend on a lot of things. Unfortunately Austin can’t wait this long, he needs something NOW.
There is a Phase II study being done in New York at Memorial Sloan Kettering Cancer Centre using an antibody called 3F8 and combining it with an oral (low dose) chemo. Unlike the COG antibody which is a humanized antibody, the 3F8 antibody derives itself from a mouse. I think I explained this in a previous entry. Because it comes from a mouse, there is potential to reject the antibody as a “foreign” substance and actually creating an antibody against the antibody. (Confusing??) Through experience they know that if the immune system is weakened, it won’t be able to make these antibodies to reject the 3F8 antibodies. In order to weaken the immune system, a high dose chemo would have to be given - (just like transplant, remember killing the bone marrow) before administering the antibodies.
As you know, we have been in contact with the doctor in NY. He has suggested that Austin has one or two high dose rounds of chemotherapy with stem cell support, then be evaluated for potential eligibility into the antibody study. Since receiving his recommendation we have approached the hospitals here at home to do the “high dose chemo” part of treatment to prepare Austin for antibodies in NY. We have contacted the doctor in Toronto who has informed us that Austin has enough stem cells in reserve for “one” stem cell rescue. We were also informed that there might have been a chance that his stem cells could have been contaminated with neuroblastoma cells as was the case in many that they have checked recently. We requested that they test Austin’s stem cells, and they have notified us that there is “no detectable” neuroblastoma. This is good news, and he also said he would be happy to forward them to us where ever we needed them. The bad news was that they denied us doing the high dose chemo there.
Our hospital won’t do the high dose chemo and strongly recommends doing it at the
treatment centre suggesting such treatment. Great in theory, but also means extra $$$$. As it stands today we would have to do such a dose in NY, there isn’t a hospital willing to do it here.
Our meeting yesterday was to get some understanding of “what comes next”. As it sits today, Glen & I feel NY is the best option (it might also be the :-( riskiest). I emailed the doctor last night to let him know of our desire to have Austin treated there. He responded this morning saying that as soon as “financial clearance” was made, we could send Austin’s records to be reviewed. A telephone conversation with MSKCC’s financial department defined “financial clearance” for me. In order to be treated at MSKCC, a foreign resident (that’s us) would have to pay for a consult ($5,500.00 U.S.). This would include doctor’s fees and tests needed to determine whether treatment would start. They also require (are you sitting down?) a $125,000 U.S. deposit ** wired to their office before they can begin anything. A phone call to the bank estimates this to be $207,000 Canadian. This deposit is an estimate of 6 - 8 months worth of treatment at their centre, not including any unforseen treatment such as fevers, admissions, etc. etc. She said in her personal experience, most families go over the minimum deposit and require to pay further fees.
The next move is ours - we need to wire them $207,000.00. When they receive this wire, they will set up a consult with the doctor. If we decide not to treat Austin after consulting with the doctor, they will refund all monies back less the consult fee.
AWe are not giving up hope that this can be achieved, and are going to try our best to get it. Our biggest fear has become reality, Austin is READY NOW, and we are not financially ready for him. We know that we have not been given any guarantees, but we feel this is his best chance for possible survival. Any percent is better than NO percent.
** Originally we were told we needed a $90,000 US deposit. This has changed since we were quoted five months ago, and is now required for all foreign residents.
I’m sorry this has been such a long post, partly the reason I’ve waited so long to fill you all in. There is much more, but not relevant now .. our minds have been full and we are left to make decisions no parent would want to make. We just don’t know ....
I will update after Austin’s clinic visit tomorrow,
Love Beth
Monday February 4, 2002 7:46 AM CST
Hello everybody,
Austin is still recovering from his last chemotherapy. He will have his numbers checked tomorrow in clinic. Judging by the weekend, I think he'll need platelets. He has several good bruises, and a few scratches that started to bleed for no reason.
Friday was a snowday for the kids, so they came with us to the clinic. Man, they almost fill up the whole clinic. They had fun playing games with Austin, and he really enjoyed having their company. He needed platelets, and thankfully there were no complications.
I didn't get a chance to meet with the doctor again on Friday. The nurse didn't think we needed to see him for some reason, and before I had a chance to ask for a meeting, he was gone. I have asked that he sets some time aside on Tuesday so that we can discuss our next move. Austin is already on his third week of chemo, I don't want too much time in between treatments, we all know that is not a good thing. Hopefully I will have more to tell you after our meeting. It's senseless to throw all of my thoughts out at you about what we would want to do next - my mind is scrambling and won't stop. As fast as I think about one thing my mind is on to the next - so yes, hopefully Tuesday we will have more answers.
Austin's blood sugar levels are still going wacky. The diabetes nurses came into clinic on Friday, looked at his counts, and told me to keep doing what I was doing over the weekend. They mentioned that the doctor would be in to see us but if she wasn't, not to wait around for her. She didn't end up coming, but I did have to page her Friday night. Austin's sugar level went really high (26.9). She wasn't panicking, as long as there are no ketones in his urine, he is OK. Can't say the same for me though, especially when they had told me anything over 13 was really bad. We set up an app't for Tuesday, I'm pretty sure that she will want us to start the insulin. I was hoping that what he ate mattered (numbers wise), but apparantly not. We will see what she says tomorrow.
Austin is home from school today. He hasn't been there since Jan. 17, and doesn't seem in a rush to go. I asked him if he wanted to go last night and he said no because he couldn't find his homework. I decided to keep him home because I'm not sure what his platelets are, and with this slippery ice I'd be really nervous about him falling and clunking his head or something. I'm a little nervous to send him to school with this sugar problem as well. I'll have to get over it I guess.
That's about it for now, looks like quite the snowy blowy day here ...
Love Beth
Wednesday January 30, 2002 7:48 AM CST
Hi everybody,
Austin is on Day 13 of his chemo, so I'm hoping that he will be starting on the upswing soon. Yesterday his counts were all very low. He required platelets and red blood and his white count is almost zero. He was very sluggish in the morning, but the transfusion helped perk him up and by evening he was back to his silly self.
After monitoring Austin's blood sugar levels for five days, it is clear that his pancreas is having a hard time at keeping his insulin regulated. He has been as high as 17 after supper and two hours later has been down to 3. I met with the endocrinologist (diabetes specialist) yesterday afternoon to discuss what has been happening. She first explained the different classes of diabetes to me: Type 1, which is juvenile diabetes and requires insulin; Type 2, adult diabetes; Type 3, gestational diabetes and Type 4, diabetes caused by other drugs or unknown reasons. At this point we are not sure what is causing Austin's sugar levels to be high but it is obvious from the logbook that he is in some sort of distress. She explained to me the need for insulin and the advantages and disadvantages of using it. When there is too much sugar in the blood, there is a great risk for infection. This is an immediate risk for Austin that could be quite serious. It is not known, but suspected that if Austin continues with these high sugar levels he will start to produce ketones in his pee. If this happens they have assured me he will be a very sick little boy. Probably because of Austin's constant monitoring, this problem has been picked up in it's early stages. The pancreas is still trying to produce insulin, but it's having a hard time at keeping up. If this is short term, (it doesn't sound like they think it is) giving insulin wouldn't stop the pancreas from doing what it wants to do. Obviously when your sugar is high for an extended period of time, your kidneys, heart etc. are at risk. The most obvious disadvantage is that Austin would require frequent pokes. She had mentioned though that initially Austin would only require a little dose and probably once a day so that we could use his insuflon for now. (Austin has a tiny catheter placed in his arm every week for his neupogen injections).
I understand perfectly what she was saying to me and agreed that Austin probably needs insulin to help him regulate his sugar levels at this time. I also made it perfectly clear that I am very concerned about what is causing his pancreas to do this. I am worried that now Austin is being followed by an oncologist, nephrologist and an endocrinologist. I fear that the three will fluff off problems to the next guy and a very serious problem may be missed. She understood and assures me that the three will meet from time to time to discuss Austin's case. After some thought I asked her if some of the following could be causing the pancreas to shut down: The obvious question, could he have neuroblastoma in the pancreas. She thought this to be an oncology question, but had reasoned a pancreas would have to be at least 90% compromised to start malfunctioning, meaning a tumor would have to be taking up at least that much of the pancreas. Since Austin just had a CT scan of the abdomin last week, this is unlikely. I asked about the fact that Austin has only one adrenal gland, and maybe the other was overcompensating. She didn't think so. We talked about stress and what role that would play and it isn't ruled out as causing these problems. I asked about whether high iron levels could deposit itself in the pancreas, and yes that could be a serious problem. Austin's ferritin level has been high over the last three years due to all the transfusions he has had. She believes the ferritin level would have to be extremely high to cause this, but will give it some thought. I asked whether or not the high / low blood pressures could be related to the high / low sugar levels. She didn't think so, nor did the nephrologist. Among other things, I also asked her if it could be as simple as diet causing these problems. We discussed the importance of diet, but with such extreme numbers it is unlikely that diet itself will take care of his problems. In the meantime though, I have asked her if I could pay close attention to his diet until Friday and see what kind of sugar levels he has. She agreed and is interested herself to see what the numbers are. This gives Glen & I some more time to absorb all of this because in all likelihood, Austin will begin insulin injections soon.
During our meeting, Austin was in the other room getting his red blood transfusion. When I came out of the room, two nurses were waiting to tell me that while I was gone, Austin's blood pressure had soared up and they had to call the nephrologist. He also spiked a temperature and had to give him some Tylenol, something that is common (for Austin anyway) during a transfusion. The nephrologist (kidney specialist) came by and didn't quite know why his blood pressure was so high, but assured me he is concerned and interested in finding out the cause. He also suggested that there was nothing immediate he could do and that only time would tell what is going on. I had a chance to voice my concern about the "whole big picture" and he is on the same page.
While consulting with him, a dietician was waiting to speak to me. We went over some simple ways to cut sugar out of Austin's diet, and she will go over things in better detail once we know for sure if insulin injections are needed. So for now, we are eliminated all the concentrated sugars in Austin's diet. This will be a big adjustment for him because "treats" have become part of his every day. Get a poke, have a sucker, etc. etc. We will have to think of new ways of rewarding him.
Once again, I didn't get a chance to discuss our next step in the cancer treatment. Hopefully I will get a chance on Friday to set up a meeting so that Glen & I can sit down and discuss this in detail. We have few options at this point as the antibody studies in the States will have to be put on hold for a while. Austin is not strong enough to have the antibody's done in New York. There is a newer study out using antibodies that would not require the risks that NY carries (I will fill you in later), but there are so many children applying for it, that it is almost impossible to get Austin on it. Our only choice is to try to keep him stable here at home until something becomes available for him. Hopefully it will be in a time frame that is best for him.
Enough to make your head spin isn't it??? In case you're wondering - Austin is terrific through all of this. He has been so involved in his care recently that sometimes he has to remind me what we're doing and what has been said. HE IS THE MOST INCREDIBLE KID and we are so so very blessed to have him in our lives!!
On that note, I am off to play with Erika & Austin,
Love Beth
Friday January 25, 2002 3:49 PM CST
Hello,
Austin is home and is feeling good. He is on Day 8 of his chemotherapy and his counts are holding on. Platelets were 53 today, hemoglobin 92 - so no transfusions were needed today. The weekend should take care of that, by Monday or Tuesday he should be bottomed out.
So much has happened since I last updated, I don't know where to begin. OK, THE GOOD NEWS first ..... The tests have all come back from Austin's latest evaluation. To recap the last year, in January of 2001, Austin's bone marrow contained 70 - 80% neuroblastoma cells, the next tests showed 35%, 15% and most recently in September 5%
Last weeks tests:
Bone scan - negative
MIBG scan - negative
CT scan - no change
Ultrasound - no change
xrays - negative
HMA / VMA (24 hour urine) - no change HMA 28, VMA 12
Bone marrow aspirate - negative
Bone marrow biopsy (under microscope) - negative
Bone marrow biopsy (using monoclonal markers) - LESS THAN 1%
Because the biopsy showed less than 1%, they will manually count the number of neuroblastoma cells compared to healthy cells. I haven't heard back on this yet.
I haven't had a chance to talk to the oncologist in the clinic, but we will be discussing our next step next week. I promise when I get a chance this week I will update you on the options that are available and those that are still out of reach, etc.
For now we are very pleased with the results and pray that he continues to respond so well !!
What else? Well, his blood pressure continues to stump the doctors. During his admission last week his blood pressure was on both ends of the scale. The kidney specialist was in to see us again, he can't seem to come up with a cause - so he has suggested we keep a close eye on the situation. Since Austin is monitored so frequently he was comfortable with that.
Oh yes, and the blood sugar levels. Tuesday morning during routine blood work, the nurse checked off blood sugar levels on Austin's requisition. I was later told that she had absolutely no reason to do this, and they were totally bewildered as to why she had. When Austin's blood results came back, the doctor had called her to the side and commented on the high sugar count. She was surprised to hear this as she wasn't even aware that she checked it off. (Once again He is watching out for our most precious child). When she was told, she immediately went to check his urine and found that he had ketones in it. (Not good). Shortly afterwards, another nurse came in to do a finger poke to check Austin's glucose levels. The monitor said his glucose levels were normal. Now they really didn't know what the heck was going on, so they checked his urine again. Now the ketones were negative and his glucose was skyrocketed. They were so confused, the doctor even went to check his own pee to see if the sticks were working right. Supposedly they were, and with this new development, it seemed they didn't care that Austin & I were all packed up and ready to go home in less than an hour. We had to wait for the diabetes specialist (whatever he's called) to consult with. He seemed quite concerned and treated it as an urgent matter. He wanted me back the next day to learn how to monitor Austin's blood sugar levels. He didn't have an explanation, but did say that he doesn't believe this has anything to do with the chemotherapy or disease.
Yesterday, we went to the Diabetes clinic and learned how to monitor Austin's blood at home. Austin it totally OK with this, and it's not as bad as I had imagined. At first I didn't think I'd be able to poke him, but it's such a tiny poke that he's just fine. I'm certainly not "up" on what this all means yet, but I know how to read the monitor. The two tests yesterday, and the two today were both out of the normal range. Normal is between 4 and 8. This morning after breakfast, he was 16. I am supposed to page the doctor if it goes over 13. Luckily (??), we were already at the hospital, so he came down to clinic to talk to us. He told us to keep monitoring over the weekend and we would sit down on Tuesday and discuss everything. It is quite possible by the sound of it, that we will have to start giving Austin insulin on Tuesday. He has booked two nurses to come and show me how to give it. What started out as a checkmark that shouldn't have been there - has turned out to be the possibility of Austin being diabetic. We will know more for sure by Tuesday, I am hoping this is all just a fluke thing. I will definitely keep you posted.
Austin is fully aware of what has been going on and it doesn't seem to be fizzing on him. He continues on with this day just like every other one. We would all do well to take his lead ....
For those in the Hamilton area, you might have caught Austin on Cable 14 twice this week. On Tuesday, Austin & Ashley were modelling new chairs that were donated to the clinic, and yesterday Austin was in the playroom eating cake during a Disney party promoting Disney on Ice. I missed both shows, if anyone saw them or better yet taped them, I'd love to hear!
Happy weekend,
Love Beth
Monday January 21, 2002 6:15 PM CST
Hello everybody,
Tonight's update comes from the hospital. Austin is on Day 4 of his chemotherapy and will be coming home tomorrow.
Thursday marked the end of Austin's evaluation, and began with a trip to Radiology. A very long day which started out with a can of Cream Soda laced with CT Contrast. Austin has always been great at gulping his "drink" down as fast as he can, I'm still not sure if he realizes that there is something "added". It must not taste that bad because he certainly doesn't seem to mind it. After his drink, he needed to have his port accessed in order to get the IV contrast. For the last few CT Scans, he also needs to be premedicated with Benedryl as he had a reaction to the contrast once before. This hopefully will prevent a reaction in the future. Roughly five minutes after the infusion, Austin was fast asleep, something that has been somewhat of a "Benedryl routine" for him. After a little nap, they were ready for the scan. He slept through most of it, and as always was a super patient. While we were waiting for the next part of our day, the Radiologist was kind enough to spend some time with me going over all of Austin's previous CT Scans. For the first time, I got to see what Austin's original tumor looked like. I really can't say that I saw what these guys see, but I got the jist of where the tumor was and how big it was. He also explained his most recent scans dating back to post surgery (March 99) where you could see some remaining tissue. It measures 20mm x 18mm, and hasn't changed size since the tumor was removed. It is situated between several things, his aorta, vena cava, kidney, liver and pancreas. This has been the area that has always popped up in coversation as to whether or not it is scar tissue or residual disease. Since it hasn't changed size or appearance in almost three years, it is assumed to be dead tissue. After leaving there, Austin was off to have his skeletal xrays done. Probably about ten xrays from head to toe. By this time, we were very ready to head home. It was now almost 2:30, and we still needed to do some last minute shopping before we headed back to the hospital that night.
Once we were home, we got everything packed, got Aaron to his hockey game - did some last minute things at home, and were back to the hospital by 10:00pm. Austin was relieved that his tubes were still in from the morning and a poke wasn't necessary this time! We settled in for the night and began chemo Friday morning.
Sunday came fast and we were able to celebrate Aaron's 10th birthday together. I can't believe that he is already ten years old - he is such a good kid. We are so proud of how he has handled himself over the past three years, he is growing up to be such a terrific person!! Daddy brought Aaron & Amber up to the hospital with all the fixin's for a birthday party. We had a good afternoon together. I missed Erika though, she stayed behind with Nana. I can't wait to see her tomorrow!!
Austin is now on Day 4 and he is looking and feeling good. He has had absolutely no nausea, has been eating non-stop and has been busy with crafts, "Teletoons" and Nintendo. Right now he is in the lounge playing basketball with a high school volunteer.
No word on any tests yet, I'm hoping to have some news by tomorrow. Until then, I'm trying really hard not to think about it - ya right!
Have a good night,
Love Beth
Wednesday January 16, 2002 11:21 AM CST
Hello again,
Well as the week goes on it seems to get longer and longer. We have finished Day 3 of testing. Yesterday Austin had his bone marrow aspirate and biopsy. Surprisingly, Austin was looking forward to his "sleepy medicine", something the nurses have said most kids dread.
Upon arriving at the hospital, Austin required another fingerpoke to check his counts. His white count and hemoglobin were lower than Monday's (??) and his platelets were up to 93. He will be admitted Thursday night for another round of chemotherapy since his platelets will most likely be over 100 by then. He will start his chemo on Friday and be finished on Tuesday. For the second year in a row, we will spend Aaron's birthday in the hospital. Aaron is very understanding and we have planned to make it up the next weekend.
Once Austin's counts were confirmed he was hooked up to IV. You would never know by watching that this is his least favorite thing about being sick. He handles it like a pro, but I know inside he is hating every minute of it. After a quick game of UNO, he was called to go on to the Ward to begin his procedure. After getting his sats moniter placed on his finger, his blood pressure cuff around his arm, his heart monitors placed on his chest and an oxygen mask placed over his face, he was ready and waiting for his sleepy juice. He went to sleep in a matter of seconds, and it was time for Mom to leave the room. The doctor then drills into his hip bone where they withdraw bone marrow and then take a chip of bone from each side. It is supposed to be pretty painful, luckily they put the kids to sleep, something the nurse told me they didn't do four years ago. He was finished quickly, the nurses said it went very smooth. He was transferred to another room, where they monitor him until he wakes up. He slept for about 45 minutes when he started to stir, and finally opened his eyes. After he was unhooked from the IV, his first mission was to eat all the snacks he had packed that morning. He is not allowed to eat until after his procedure, which by now is 12:00. His "breakfast" consisted of bugles and chips, a lollipop and 2 candies. Now he was ready for his "healthy" snack and ordered a trip to Burger King. After "lunch" we did a bit of grocery shopping and made our way home, where for the rest of the day he did what any other 6 year old child would do!
This morning was a bit easier for him, he had an MIBG scan first thing. Since he already had an injection on Monday, his only job today was to lie very still for 50 minutes. He says his bone marrow is easier, because all he has to do is sleep. Other than a few wiggles his test went smooth.
He was dropped off at school just in time for lunch, and will be picked back up at 2:00 as the kids in his class are going skating. As much as I'd love for him to go skating, I think we'll pass and be sure he's in one piece for tomorrow's tests :-)
Good day,
Love Beth
Monday, January 14, 2001, 9:03 pm.
Today Austin started his first in a series of tests he will be having this week. To add to an already busy day, Aaron had a 6:30 am hockey practice.
Austin arrived in Nuclear Medicine at 8:45 to get his injection needed for his bone scan. He had the choice of being poked in his port-a-cath (a central line placed in his chest) or his hand. He chose his hand since he is not overly thrilled with being accessed by his port. Before we left home, we put Emla on both hands, just in case one side didn’t work well in addition to his port just for added measure. Emla is a cream that is used to numb the skin to minimize the poking sensation.
As always, Austin was very calm and was a perfect patient for his injection. On the first poke, the needle went in (not always the case), and the contrast for the bone scan was injected. The two techs and I were so caught up in telling Austin how well he was doing, I didn’t notice that one had already taken the needle out. It slipped their minds that Austin would be needing another injection two hours later for his upcoming MIBG scan. Usually they leave it in. We had given Austin the choice of having another poke right away, or waiting the two hours. He opted for the latter.
As we waited the necessary two hours for the bone scan, we made our way to the lab for a fingerpoke. Once that was done, it was time to head up to the clinic. We waited there for blood counts, and were pleasantly surprised to find out that Austin’s hemoglobin was a whopping 117. Normal range is 105 - 145. Probably explains the nice rosy cheeks he has had. Platelets are just shy of the required 100 for another round of chemo, today’s were 73. His white count is in the normal range at 6.5. There was no time for checkups or discussions, we had to be downstairs for an ultrasound at 10:00.
As with any day of testing, it is a hurry up and wait sort of day. We spent some time in the waiting room and made our way out to the hallway as there were quite a few young children and babies there as well. I had to explain to Austin that we had no way of knowing if those babies or children had been sick or worse yet been exposed to chicken pox unknowingly (or knowingly). He understood, and waited patiently out in the hallway until we were called. He’s not thrilled with having an ultrasound done, he doesn’t like the wet goop they use. He had a good idea though, he thought maybe if he took off his shirt, he wouldn’t get slimed. He did a great job of holding his breath when asked, flipping on his side, and laying very still. A good thing, as it took the (student) almost 40 minutes to do what normally takes about 20. After we got the OK to get going from the doctor, Austin’s efforts were in vain, the top of his underwear got “gooped”. We wiped up best we could and made our way back to Nuclear Medicine.
He was ready for his bone scan, where he has to lay very still for about 20 minutes. A full body scan was done, with the hardest part being the head. He has to lie very still face up looking at a big camera about two inches from his nose. As he gets older, this seems easier - except for the occasional itchy nose or watery eyes. After being the super patient, he is called back to the IV room for another poke in the hand and his injection of MIBG. He will be scanned in 48 hours (Wed.) and possibly a 72 hour if needed. Because the thyroid is a place the MIBG likes to attach itself to, Austin will need to take iodine drops (Lugols solution) for the next ten days. This will prevent (hopefully) any problems with his thyroid in the future. The drops are horrible, but Austin has found a way to make them bearable. He mixes a medicine cup of Coca-Cola (of coarse) with 5 drops of iodine, then
chases it with a glass of “good” pop.
Back up to the clinic after Nuclear Medicine to be weighed and measured for tomorrow’s bone marrow aspirate & biopsy. It is now 12:15 and we are starving, so we make a quick stop of Harveys for chicken nuggets and onion rings, and have him to school by 1:30. He looked a bit tired at 3:30 when I picked him up, but not as tired as I. I’M BEAT and very ready for bed!!
Have a good night,
Love Beth
Saturday, January 12, 2002 at 02:50 PM (CST)
Hello everybody,
It has been a hectic sort of week for us as we try to sort out some sort of logical treatment plan for Austin to
continue with. As always, Austin seems to give us lots of thinking time, which is a good thing - but sometimes too much thinking can drive a person nuts!
To begin with we have requested to have the immunocytology reports be done on Austin's bone marrow dating back to last January. This gives us a better idea of his disease status and should help (ya right) determining what the next best step would be. In January 2000, Austin's bone marrow consisted of 70-80% neuroblastoma cells in it. In Spring 2000, there were still 70 - 80% cancer cells. In May there were 35%, July 15%, and the last bone marrow done in September showed that there were only 5% neuroblastoma cells in his marrow. As I understand, this constitutes the title of "minimal residual disease" (MRD).
Most recently, we have discussed Austin's case with our five local oncologists, have asked opinions of two oncologists in Toronto, have had correspondence with a doctor at Children's Hospital in Los Angelos (CHLA), and have had contact with an oncologist at Memorial Sloan Kettering Cancer Centre (MSKCC) in New York City. So you think NINE oncologists working to find the best treatment option available for Austin would make it easier? NOT. Sometimes too many opinions make researching options that much more confusing, but I think generally most are on the same page.
Austin will be reevaluated this week. These tests include a Bone Scan, an MIBG scan, an ultrasound, a bone marrow aspirate & biopsy, a CT Scan, skeletal xrays and a 24 hour urine check. The results of these tests will help us determine which in fact is the most reasonable option to follow through with. There are alot of factors to consider and we are trying our hardest to make sure we weigh them out carefully.
Austin continues to feel good, in fact he has - to put it politely - been a little bugger lately. I take this as a GOOD sign, he is trying so hard to be a "normal" six year old boy. I am taking this as a sign that he feels good and doesn't need the special attention he normally requires. School has become priority for him, in fact he chose to "skip" clinic the other day because he didn't want to miss school. Because his counts are on the upswing, it wasn't a big deal to play hookey this one time :-) He will have to be at the hospital everyday next week so he deserves a break once in a while!
I will update you as his tests unfold and hopefully will get results soon. I believe the plan includes one more round of chemo as we wait for these results and sort out the details of "what comes next". He will probably be admitted around the "18th" for 5 days for what possibly might be his last chemo. We'll see.
Even though we are facing some of the hardest decisions we have had to make so far, and believe me, we have had to make quite a few, we feel so blessed that at this time our biggest concern is how to keep Austin "stable". We know all too well that we could be in very different circumstances and that Austin continues to be one of God's little miracles! Please continue to keep Austin in your prayers, I believe He is listening.
Take care everyone,
Love Beth
Tuesday, January 01, 2002 at 09:42 PM (CST)
Happy New Year !!
The thought of entering into the year 2002 holds many different emotions for me. I pray that this new year holds promise for our son for new beginnings and wellness. I pray that this is the year that we find a cure for the disease that has lurked in our lives the past three years. I pray that I will celebrate the year 2003 with him by my side, laughing and tooting horns! I pray that this year our family will hold together and will be stronger than ever come next. In ways I don't want the year 2002 to ever end ... I'm very afraid of what it means for our family and what it means for Austin. I have to continue to keep my faith that only good things are in store for him. I can't imagine any other way.
We rang in the new year with friends and family at home. Austin was very excited when he woke up yesterday, saying it was finally "Stay Up Day". I asked him what he meant, and he said that today was the day he got to stay up all night and didn't have to go to bed. He was so pumped all day, and was the first one to put his hat on and start blowing his horn - even though it was only 9:00. He kept the hat on anticipating midnight and had a fun night. The kids all had fun playing games and goofing around - there were ten of them altogether. Once midnight had almost arrived, they all suited up and were very ready to welcome in the new year. Austin had ran upstairs and came back down with a pot and wooden spoon - he was very ready!! It got pretty noisy by 11:55, and the adults were caught up in the kid's excitement. I was watching as Austin sat beside our friend Randy tooting his horn but looking very sleepy. We were joking saying he only had 5 minutes to go. At exactly 11:57 Austin with his eyes now closed gave a last toot of his horn and fell asleep falling side ways into position on the couch. That's where he stayed and slept right through the commotion of midnight. Even more classic, I caught him on video tape the exact moment he fell asleep with the time confirming that he indeed fell asleep 3 minutes before midnight. The rest of the bunch had a great time ringing in the new year. Austin told us this morning that he was faking it and he really wasn't sleeping, hmmmm.....
This week has been super. We have been surrounded by friends and family and have kept ourselves busy enough that for a few days we have put our troubles on the back burner. The kids have been non stop since school had let out. They have been skating on the pond, today they had a pretty good hockey game going on with some friends & cousins. Even the Dad's were in on the game, it was an awesome day. The weather was perfect, even Mom :-) got outside for awhile. Glen had a fire going, so I got to sit rink side by the warmth of the fire. It was cool !
Austin has been feeling better everyday. He looks super, his color is back and he looks so bright. As soon as I get our pictures in, I will update the photos on the webpage - it's been a while. Clinic is booked for tomorrow, so I hope to see his counts looking better - and will get an idea about what comes next. From what I understand, he will be reevaluated in two weeks to see where things are at.
In the meantime, our fundraising needs to pick up some speed now that the holidays are over. We will be meeting this week to discuss possible fundraisers and ideas. I am certain now that Austin is in the perfect condition to receive the treatment that is available in NY. This will be confirmed through tests coming up. We are still $50,000 short for our DEPOSIT that is required, not to mention the cost of sending his records to be viewed by their docs, which I believe can be pretty pricy. Until we have the financial means, we cannot approach these doctors with Austin's case. I pray that we can do so SOON!
Again, I wish everybody a Happy New Year filled with happiness and health. Thank you for checking in on us!
Love Beth
Thursday, December 27, 2001 at 06:37 PM (CST)
Austin felt much better yesterday afternoon. He seemed to be more of his silly self :-)
Today's clinic visit was long, especially because we were late getting there. Our morning started out with a dead battery in the van. When Glen got in the truck to boost the van, his battery died. He finally got it going and off we went. I couldn't believe the number of kids in clinic today. It was packed. We waited out in the playroom until they called Austin to be hooked up. He needed red blood today, his hemoglobin was 77. His platelets were 23 which normally would be OK, but since the clinic is closed on Monday & Tuesday, we all felt we shouldn't leave him until Wednesday. It's possible he might not need them, but I would feel better knowing he was topped up. The only problem was there were NO platelets in the hospital. They weren't going to get any until tonight. So they are going to set some aside for Austin to get in the morning, but they have no guarantee as to whether or not they will still be there. If there is an emergency (car accident, etc. etc.), the platelets set aside for Austin will have to be used tonight. I'm not sure what that would mean for us tomorrow. It's very frustrating to hear that there aren't enough blood products for our children needing them and believe me there are LOTS of them every day. Christmas Eve there were six children being transfused in the clinic alone, plus the ones on the ward. I am very guilty of not donating blood, I feel this is something I definetely will do after Austin is through all of this, but maybe I need to rethink that and start donating now. I can never ask too many times, if you have donated blood in the past, please continue to do so, and if you haven't - it's a good time to start!!
Austin's white count is recovering nicely, his granulocytes were 0.1 on Monday, today it was 2.2. This means he is no longer neutrapenic, and he can be out & about again. It felt good to take him grocery shopping after clinic, it seemed forever since he had been out (other than to the hospital). Groceries, big treat, eh? The things we take for granted. What's more important is we don't have to limit the traffic going through the house.
That's about it for today, it's good to be home!
Love Beth
Wednesday, December 26, 2001 at 10:10 AM (CST)
Hello everybody & Merry Christmas!!
Whew, it was a close one - but Austin got to wake up at home with his brother & sisters Christmas morning :-) Just where he ought to be!!
We spent part of Christmas Eve in the clinic. Austin's platelets were only 9, so he needed to be transfused. His hemoglobin was 92, which didn't make sense to me as Austin could barely make it down the hallway to get into the clinic because he was so tired. I believe sometimes the fingerpokes aren't always accurate and it was likely that Austin needed to be transfused with red blood as well. As we lifted his shirt to be accessed, we noticed his belly feeling a bit warm. We took his temperature, 37.7, the nurse and I looked at each other and had tears immediately. It was more than obvious he was beginning to spike a temperature, which of coarse would mean he would have to be admitted. Because he needed platelets, he was premedicated with Tylenol & Benedryl, so if he were to spike a temp, it would probably be masked with the Tylenol. We at least got to go home after he was transfused and there we continually monitered his temperature. He hadn't eaten all day, he looked very very tired, and he didn't have one smile - not what you want to see the day before Christmas :-( His temperature stayed consistant 37.7 to 37.9. He went to bed at 10:00 feeling a little better, but still warm. A BIG PART OF ME didn't want to check his temperature until morning!
He was fine through the night and woke up in his own bed Christmas morning. The kids had a great morning and we had a fabulous day with family. Mine and Glen's family were here for dinner. The kids were happy to see snow on the ground and spent some time out playing in it. It was a late night for the kids, but sure enough they were up and about on time this morning to play, play, play with all their new finds!!
Austin will be checked in clinic tomorrow. According to previous rounds, Austin's white count should start to bounce up tomorrow, if not already today :-) YEH!!!! He is feeling back to (his) normal today, so hopefully he has a good two weeks or so of feeling GOOD!! I LOVE this time he has to play and go to school :-) Just thought that yesterday (Xmas morning), Austin was feeling nauseaus. The kids were eating breakfast and everytime Austin went to go to the kitchen he felt like he was going to throw up. Once because Amber had spilled milk on the table, once because Aaron made a mess at his place, once because there was a paper towel rolled up on the counter with something on it ... everytime he tried to go into that kitchen his mouth would start to water. Finally I told him to go to the bathroom to throw up and get it over with. He went, and as he was sitting on the floor in front of the toilet, and I was looking at him thinking this was not where your son should be sitting on Christmas morning, he looked up at me and said "If I just didn't ever have cancer, I wouldn't have to throw up all the time". It ended up he fought off the nausea and ate breakfast - and felt better soon after that. I don't have to tell all of you how it just breaks my heart to see him like that - my point? Today he feels good, and tomorrow he'll feel even better, and as the doctor checking his blood pressure said "One good one makes up for ten bad ones"!!
Have a great day,
Love Beth
Sunday, December 23, 2001 at 04:32 PM (CST)
Hi everybody,
As most of you are scrambling to get ready for Christmas, our biggest concern is hoping that we are all together Christmas morning. So far so good, Austin is doing great today, I thought by now his low counts would be apparent by his low energy level and bruising, but not the case. He has had a pretty normal day ...
We will be getting his counts checked in clinic tomorrow morning. They have asked that we be there for 8:00, hopefully we'll be out in time to enjoy the rest of the day. We are getting together with Nana & Gramps & family in the afternoon. The kids look forward to that all year!
Our family wishes you all the happiest and healthiest of holidays. We would like to thank you all for the love & support you have given us through the year and are truly blessed to have such friends & family surrounding us.
God Bless & Merry Christmas,
Love Beth, Glen, Aaron, Amber, Austin & Erika
Saturday, December 22, 2001 at 10:24 AM (CST)
Austin's clinic visit was a quick in and out yesterday, his counts were both above the transfusion marks. He is neutrapenic though, his white count was only 0.1. He did have blood work to cross match for a transfusion if needed on Monday, and to check the levels of renun (I'm going to have to find out how to spell that :-) )
So far it seems he feels OK this morning. We have nothing planned, we are just hanging around for the day.
Three more days ....
Wednesday, December 19, 2001
Austin had a good day today. He feels well and looks good, his energy level doesn't seem to be compromised in any way. The countdown begins, hopefully I will be able to report a fever free holiday. Austin is so looking forward to Christmas as are the other kids (and Mom too!!)
Tuesday, December 18, 2001
Hello everybody,
Hope this update finds everyone well. Austin & I are back home after a 5 day stay at the hospital. He was administered his ninth (since relapse) round of chemo. Everything went pretty smooth. He had absolutely no nausea, he ate well considering he was in the hospital - he DOES NOT eat hospital food - he won't even allow it into his room - and he kept busy the entire week doing crafts and playing Play Station. Because of the Christmas season, there were things going on down in the playroom everyday. Austin got to meet Robert Munsch and listen to his storytelling, one day there was a Britney Spears wanna-be singing to the kids, yesterday there were cowboys who came to sing some Christmas songs. Friday night Austin invited two girls to his room, Ashley & Rebecca for a snack and to play. Austin is so shy that he more or less sat and watched the girls play for a while until Ashley's mom suggested a game of Uno. He's so quiet sometimes, but I think he had fun :-) He was very surprised to receive visitors on Saturday. His cousins came up to see him and they spent the night playing Play Station. He actually stayed up until 12 oclock, and was wound up more than ever. It was nice to have the company.
I'm not sure if I've updated on Austin's blood pressure or not. For three admissions now, Austin has been experiencing high blood pressure readings. They come and go, but the numbers are high enough to be concerned about. Each time a doctor is paged, they more or less just have said to keep an eye on it. Ranging from 15 minutes to a couple of hours, his blood pressure returns to normal. Even stranger, he has had extremely low blood pressure just hours after having it high. This is all new to me, so bear with me :-) Since this has happened on two other occasions, our doctor booked a consult with a nephraologist (sp??) (kidney doctor). They are stumped as to what might be causing this behavior, as it is not at all consistant, and otherwise Austin is showing no symptoms of high blood pressure (dizzy, blurriness, headaches, swelling). The only one that they were a little concerned about was that I had told him on a few occasions, we had noticed Austin's face flushed all of the sudden for no apparent reason, and as fast as it came, it would go away. In the future we will watch to see if he is sweaty or clammy when this happens. I spoke to the kidney doc. yesterday, he has ordered some blood work and a urine test for us to do next time we're in clinic. There are several reasons why Austin could be experiencing high blood pressure, but none of them make sense in his particular situation. The first one that stands out is that originally Austin's primary tumor wrapped itself completely around his right renal artery, more than likely causing scarring. It is possible that the scarring might be constricting the artery. But if this were the case, they would expect the blood pressure to be consistantly high. Another scenario, sometimes when the kidney is not getting the blood flowing through properly, our bodies create a hormone renun (sp?). If our kidney's are being blocked somewhere, we create an excess of this renum, which could cause high blood pressure. Again, he would expect that it would be consistantly high. And the last one that jumps out at them, is that neuroblastoma itself can create high blood pressure by releasing gushes of adrenaline, which might be why Austin is getting the flushed face, or high levels of VMA could cause high blood pressure. This would make sense if Austin had bulk disease, but since he has minimal disease, it doesn't. So bloodwork will determine if he has high levels or renun and a 24 hour urine will determine his VMA levels. We'll go from there.
Phone calls are still being made regarding our future treatment plans. I spoke to the bone marrow coordinator the other day, and it doesn't sound impossible that Toronto might do the high dose chemo needed in order to go to NY for antibodies. This would be good news! They will be discussing it this week to determine whether it is reasonable to put Austin through such treatment. They would do it on a compassionate basis - I'm not sure what that means yet. Once we hear back from them, our plans will be much clearer.
Austin looks really good, he just woke up and still has colour in his face, and sparkles in his eyes. We are keeping him home this week so that we minimize his exposure to germs. His bottoming out period is from the 22nd to the 27th. This means any fevers, he will be back in the hospital for at least three days. We are hoping to have him home for Christmas, but deep down, it doesn't matter .. the important thing is the fact that we have him here with us at all ... his fourth Christmas since diagnosis! Merry Christmas Austin :-)
Love to everyone,
Beth
Saturday, December 08, 2001 at 11:18 AM (CST)
Hello everybody, I didn't realize it's been so long since my last update.
Austin has been feeling good, and has been busy doing normal six year old things. He has been able to go to school, other than clinic days and a couple of days he wasn't feeling that great so we kept him home. His counts are all coming up, he has been off neupogen for a week now. Platelets were 80 yesterday, so we are scheduled to check again Wednesday morning for that magic number 100. If so, Austin will be admitted for another round of chemo, 5 days inpatient. The timing isn't the greatest, (the 12th of Dec), as Austin's counts usually bottom out between days 9 - 14. (This will be Dec 22 - 27) This is the period he will be neutrapenic (immune system low) and will require blood transfusions. Of course, we'll just take it day by day and hopefully get through the Christmas week without having to be admitted for fever.
We have once again got the doctors making phone calls and trying to figure out a plan for Austin. It seems we just keep going around in circles. Hopefully this time around we'll start the ball in motion. At this point, without getting into too many details, we are determining whether or not high dose chemo can be administered to Austin here in Canada. There are institutions that do it, but with Austin's history, they may feel he is not a suitable candidate. In order for Austin to have antibodies in NY, he HAS to have high dose chemo beforehand. (Like he did in Toronto two years ago). NY has just published results from their Phase II trial using antibodies & GMSCF, and out of 10 recurrent nb patients, 5 of them had a complete response in their bone marrow.
I imagine that if we find a place to do the high dose chemo, we will do it immediately following Austin's recovery from this next round of chemo. It concerns me that we will be committing ourselves to a protocol that we're not sure he will be accepted for (they (NY) can't tell you for sure until AFTER the high dose chemo) and the fact that we still haven't raised enough money for the deposit, yet alone the expenses that come with the treatment. Time is running out, we can't sit on the fence any longer. Austin can only hold on for so long.
I'm sure I've confused the heck out of everybody, please ask if you don't understand what I'm babbling about :-)
So for now, we wait until Wednesday. We have put our Christmas tree up, shopping is in progress. I will try to have everything in order before then so I'm not panicking when we get home (on the 17th). Last weekend the Coca Cola Xmas Party was at the theatre's on Upper James to see Harry Potter. The kids really liked it (so did I). Afterwards, we headed over to the Help a Child Smile Christmas Party. The kids had a good time.
God Bless,
Love Beth
Sunday, November 25, 2001 at 09:45 AM (CST)
Well we continue the fast pace around this house - it is just non-stop.
Thursday's clinic visit went well, although Austin required platelets. They dropped back down to 6, surprising because he had little bruising. The only indicator was a tiny blood blister on his lip. Besides the platelets, the other counts are doing wonderful. His white count is up to 5.0, which means he is about a week or two ahead of his recovery schedule compared to other rounds. This is great news to me, I would think that each round of chemo should be getting harder on his bone marrow, instead his bone marrow seems to be recovering faster each time. Hopefully it means that there is alot more room for good cells, and those "bad" cells are slowly disappearing. I'm also wondering if it has just taken this long to recover from the effects of the four rounds of ICE he had. No matter the reason, it is a good sign :-) His hemoglobin is staying up there at 114, great number !
After clinic, we came home to rush out again for Aaron's hockey game. He is really enjoying hockey, it's great to see him having fun out there. After hockey we came home to celebrate Daddy's birthday.
On Friday, we had the pleasure of attending a Benefit concert for Austin. Some wonderful people got together to raise money for Austin, we enjoyed listening to the wonderful music of "The Strings of Pearl".
Yesterday we had a great day at the annual Smithville Santa Claus Parade. Austin was the Honorary Parade Marshall, and got to ride in the first car heading up the parade. He had a little "queen" wave going on, he was adorable. When he got to the end of the parade and was able to watch the rest, he was so happy to be thrown an endless supply of candy. We ended the day with our nephew and friend spending the night and entertaining the kids with "Playstation".
Austin has been doing well at school and looks so forward to going. He wakes up at 7:00, and by 7:20, he is fully dressed, has ate, brushed his teeth and is ready with his coat and shoes. His bus doesn't come until 7:55. He was able to go three days last week.
Tues/Fri he will be checked in clinic again, which I'm sure will be short & sweet visits. (Hopefully). This will give us a week of ALMOST normal!
Take care,
Love Beth
Wednesday, November 21, 2001 at 07:08 AM (CST)
Hello everyone,
It's been one week since I've last updated and it seems like that was a lifetime ago. This week has been extremely busy for us.
Last Wednesday Austin & I left early morning to attend a meeting at Coca-Cola, where we were presented a cheque from their fundraising. (I will update the fundraising web page soon, I promise). Austin seemed pretty quiet, but I thought it was because it was so early in the morning for him. After leaving there we went to clinic for his checkup. As he was getting his fingerpoke, I noticed his head was getting a little warm. When we got up to the clinic, he was still feeling OK, but still felt warm, it wasn't until I saw his counts I realized we might have a problem. He was neutrapenic (his immune system was VERY low), which I didn't count on until Thursday / Friday. Anyways, we took his temperature and it was 39.4. As you all know by now, the magic number is 38.5, so he was admitted that morning for febrile neutrapenia, by 11:00 we were on the ward. He was so brave to get all of his cultures done, as always.
He spent our time their quietly, slept alot. He wasn't feeling yucky, and he even looked OK, he was just tired. He needed two platelet and one red blood transfusions while we were there. His blood pressure kept doing tricks again, up and down, up and down. Because it is not staying consistantly high, the doctors are not concerned at this point, but do want it monitored. He spent a little bit of time with volunteers, and his teachers. He had a lot of fun with the Home Depot guys building a safety box, he also got to spend an evening with Nana - which was good for both of them!
The last temperature recorded was on Wednesday night at 8:00, so we had to wait for the magic 48 hours without a temperature before we came home. Because this fell Friday night, we had to wait until Saturday. His cultures all came back negative, he was eating and drinking great so they discharged him around noon. Two minutes before the nurse came to deaccess him, his temperature went up to 37.8, so we had to wait 2 hours to monitor that situation. Happy ending ... his temp went back down, and we got to come home.
Saturday night was a great time. We had our Lasagna Dinner / Dance / Auction for Austin. It was a great night for everybody. Again, I will update on the other webpage soon. It was fun to see alot of our old friends, and meet new ones! You guys are ALL TERRIFIC!!!
Monday's clinic visit shows Austin's counts starting to recover. His white count has come up so he is no longer neutrapenic, his platelets were borderline for transfusion, but because his counts seem to be on the upswing, we left him to be checked again Thursday. This means that Austin has to be very careful not to get bumped or banged, as this could cause unstoppable bleeding.
He felt OK to go to school yesterday, so away he went. He IS incredible, let me tell you. He had a good day, although by 1:00 he started to tire out a bit. He called me and asked if I could come get him, which was our deal the night before. He went off this morning expecting to go the full day. Tomorrow we have clinic again.
So the plan for the near future anyway, is to recover from this round of chemo - which should take about three more weeks. We will be doing another round in December, and then re-evaluating him to check his disease status. Depending on what we find, we will plan accordingly. I am meeting our doctor next week to discuss potential plans, as I always like to be one step ahead!
That's about it for now,
God Bless,
Love Beth
P.S. HAPPY BIRTHDAY DADDY!!!!!!
Sunday, November 11, 2001 at 01:43 PM (CST)
Austin & Mommy are home from another six day stay at the hospital. Austin was admitted on Monday night and began yet another round of chemotherapy, making this his 20th round in the last three years. As he recovers from his 8th round of chemotherapy since relapse, we pray that we have made some headway and eradicated more disease in his bone marrow.
His five day course consisting of Topotecan and Cyclophosphamide went very smooth, with only minor concerns. At one point, his blood pressure was on the high side, and another his glucose being high. We will be checking his glucose again next clinic check, and will keep our eyes on the blood pressure. These are minor, and aren't of big concern, but definetely noteworthy.
Austin felt good through the course of the week, although he suffered from a little boredom. He experienced little nausea and ate and drank well. He made a lot of new friends with volunteer staff - and did well to complete his school work. He spent most of the week glued to the TV watching TeleToons.
His spirits have been good since he's been home, in fact he's outside playing as I'm typing. He just came in to say he found a hummingbird's nest and wanted to bring it in to keep. I on the other hand am tired and can't understand where he gets all his energy from :-)
Today marks the three year anniversary of learning through an ultrasound that there was a mass of some sort in Austin's abdomen. Two days later, we found out that the mass in our little boy's belly was malignant and was something called "Neuroblastoma". We were told that left untreated, Austin would not survive past three months. I thank God everyday that we live in the times where medicine has instead given us THREE YEARS with our most precious child. I thank God everyday that He has given us time to learn about Austin's disease and pray that we are able to find the treatment that Austin is holding on for. I thank God everyday for our family and friends that have supported us over the last three years.
God Bless you all!
Love Beth
Thursday, November 01, 2001 at 01:26 PM (CST)
AUSTIN will be on CH News (Hamilton) TONIGHT at 6 pm & 11 pm. His story will be featured on "Your Health" and will be talking primarily about Neuroblastoma.
Hope you can catch it!
Austin is looking like his own self today. He has his colour back (he has been so pale lately) and looks a lot more energetic. His counts are on the upswing and platelets look good for admission Monday or Tuesday for his next round of chemotherapy.
We enjoyed Halloween yesterday. The kids had a school parade in the afternoon and each had their classroom parties. Aaron was a (?) really ugly monster looking thing, Amber was a witch, Austin was a caterpillar, and Erika was a monkey. They got plenty of candy trick or treating!
Pictures of the hockey game are posted, check them out!
Love to everybody,
Beth
Saturday, October 27, 2001 at 12:31 PM (CDT)
Hello everybody,
We had the most awesome night last night. Austin was asked to drop the puck at the Hamilton Bulldogs Hockey game last night. It was so cool.
It was Project Sarah night at Copps, and they had called to ask Austin to be the official puck dropper. Austin was very excited, and had anticipated it all week. He had visions of getting squished by the hockey players as he dropped the puck, then he imagined they would have to pick him up and throw him over the glass to his seat so they can play hockey. I let his mind wander, because it just seemed fun :-)
When they were ready for Austin, we were escorted to the Media Room and asked to wait to be called. Austin patiently waited while enjoying some donuts and pop. He didn't seem nervous at all, in fact he was playing it pretty cool. Steve (Project Sarah) was going to be with Austin when he dropped the puck. Austin wanted Mommy to go, but I told him "No girls allowed on the ice" and he was OK with that. We finally got the call and waited outside the Bulldogs dressing room to go on the ice. We were told not to distract the players, so we stood quietly and Austin looked in awe of how big these guys were! After some fireworks, Austin and Steve made their way up the red carpet. They announced that Project Sarah was fundraising to support families of children with cancer. They announced Austin, 6 1/2 year old from Smithville, who had been diagnosed with cancer three years ago and had been on and off treatment since. They played a bit of Sarah's song which still gives me goosebumps. Then Austin dropped the puck. He actually didn't drop it, he PLACED it on the ice. He shook the captains hands, and got to keep the game puck. We had a great time at the game, it was alot of fun. Austin got to pull a winning ticket for a Bulldogs jersey in the third period. It was a big night for Project Sarah as well, they are doing an incredible job! Check them out at www.projectsarah.com
That's about it for now,
Have a good weekend,
Love Beth
Friday, October 26, 2001 at 2:06 PM (CDT)
Hi everybody,
Austin has gone to school today. He is feeling a little better, hopefully he makes it through the whole day today without getting too tired!
We had clinic yesterday. Counts were still above transfusion. Platelets rose a bit to 22, hemoglobin fell a bit to 89. White counts were well above normal, so we have discontinued the neupogen injections and hope his platelets will start to recover faster. We will be able to start another round of chemotherapy once his platelets reach 100. I'm guessing this will take 7-14 days?
The results from Austin's urine came back. A 24 hour urine collection is taken to test the levels of urinary catecholamines. HVA & VMA are substances that are exreted by neuroblastoma tumor activity and are found in the urine. There was some confusion about the results from the test taken on October 4th. The results were very high, suggesting that Austin has increased tumor growth. After learning that foods can cause distorted results, I asked for the test to be redone. Although the amounts of HVA & VMA were still elevated, they were almost half of the first test and comparable to previous ones. At this point, I don't have a clue what it means for Austin. According to his most recent evaluation, he is presenting with minimal disease. The doctors will not consider changing treatment options based on a 24 hour urine test. They have to look at the whole picture, which in Austin's case, looks pretty good at the moment.
So we will keep our eye on things more closely and will probably reevaluate sooner than later. In the meantime, we wait for Austin's platelets to rise so that we can start another round of chemotherapy.
Many people have been asking when Austin will be getting treatment in the States. This question is not easily answered, and I find myself not knowing what to say to people. At this point, our main goal is to raise enough funds to be able to have these options available. Without $$, there are no options. Once we have $$, we can look into those options. Although the fundraising is going well, we are no where near being able to consider approaching an institution about their treatment.
The treatment Austin is presently receiving is keeping his disease stable. I'm hoping that it will eventually eradicate all the disease, but that is unlikely. We will be asked to change / stop treatment when there is progression or Austin's bone marrow fails to produce platelets. For now, we are good.
Take care,
Love Beth
Thursday, October 25, 2001 at 11:42 AM (CDT)
It’s been a long week, Austin has been doing okay. Not great, not bad - just okay. His counts have remained above the transfusion marks which is a good thing, but again, I am wishing that he would’ve dropped low enough to require a top off. He is tired, and not his silly self. It is an effort for him to play. He doesn’t want to go to school because his head hurts. I am guessing that because his hemoglobin has remained well below normal, but not low enough to transfuse, it is causing this behavior. When he is transfused, it is a matter of hours that he bounces around like a rubber ball - full of energy. Not the case this week. His platelets have remained around 20, extremely low, not low enough to transfuse. I am constantly reminding him that he has to be careful, I am constantly afraid he is going to bang himself and cause bleeding that I can’t see. He is “tired” of Mommy constantly on his case.
As you might guess, I am not in the best mood. I’ve decided to share this kind of mood with you today instead of my normal “positive” one. Today is one of those days where I’ve had enough of all of this. Today is one of those days that I seldom have, but do indeed experience once in a blue moon.
While reading another child’s webpage recently, I was comforted to know that I wasn’t the only one relating my feelings as a “parent of a child with cancer” to the events that took place on September 11th. Obviously what happened that day was devasting and I don’t mean to offend anybody with my analogy.
As I imagine everyone else has, I will forever have the image of that plane smashing into that second tower etched in my mind forever. I however, have different thoughts as I lie in bed going over that day in my head, and I would like to share them with you.
I compare Tower One being hit alot like being told your child has cancer. You know
something really really bad just happened, but you’re in shock, and you don’t really
understand. You go through the motions not really knowing why, just because you have to. Some made it out of that first tower, sadly some didn’t. Although the ones that made it out of that first tower were safe, their lives have been changed forever. They grieve over the ones who were lost, and feel like it was a miracle they made it out alive. It is only then that they begin to realize the tragedy that occured, and begin to learn the details and try to understand them. I can guarantee nobody would want to have to relive that day again.
I compare those people who made it out of Tower One with a parent who’s child is in
remission.
Now imagine asking those survivors to go sit in the second tower and wait to see if it will happen again. Imagine their fear. Imagine every day wondering whether or not you will have to experience the same nightmare over again. To make it worse, some are told to go stay on the sixtieth floor. I imagine the higher up you were, the less secure you would feel. I compare this with being told there is a 60% chance your child will relapse.
OK, here comes the second plane crashing into Tower Two. Not only do you see it coming, you brace yourself because you know what it means when it does. That is EXACTLY how I felt the day the doctor called and told me my child had relapsed. Now we race to see how fast we can get out of that building before it collapses. It feels like we will never get out. Some days it feels like we’re almost to the bottom and ready to dive out the door and say “WE SURVIVED”, some days it feels as if we’ll never get out.
No matter, we are all better people for experiencing this in our lives regardless of how horrible it may be. We have been blessed with these children and all the lessons in life they have taught us. My love to all families and their children having to face these challenges EVERY day.
My love to all of you,
Beth
Monday, October 15, 2001 at 03:16 PM (CDT)
Hello everyone,
Well Austin managed to get through the weekend in one piece - and at home! He woke up Sunday feeling much better although his temperature hung around 37.7 all day. His leg seemed alot better too. He wasn't his usual spunky self, but definitely better than the day before.
Todays clinic visit was long. His platelets were at 8, so a transfusion was needed. Because there were NO platelets in the hospital we had to wait for them to arrive. Once they did finally come, it took 1 1/2 hours to prepare them for Austin. Because he is premedicated with Benedryl, he fell asleep, so even though the transfusion was finished, his nap wasn't. I waited for him to wake up before they deaccessed him. His hemoglobin is hanging in at 89, and his white count has started on the upswing. He is no longer neutrapenic!!
Tomorrow he will be able to go to school :-). Wednesday he has a field trip to a pumpkin patch, so I'm glad that his counts have come up enough for him to enjoy that!
The doctor doesn't really have an explanation as to why Austin is experiencing leg pain. He feels if it were disease related, we wouldn't see it come and go like that. I had to remind him that at diagnosis, Austin did experience pain in his shoulders on and off. At this stage in the game, you can't rule out anything :-( I pray it is not disease, a good indicator will be his 24 hour urine results, which I should have on Thursday.
That's about it for now,
Take care,
Love Beth
Saturday, October 13, 2001 at 11:05 PM (CDT)
Hi everybody,
Austin didn't have such a great day today. Last night he complained of leg pain again. Very similiar to the leg pain he suffered from last month. By bedtime he couldn't walk on it and he was hurting pretty bad. He managed to get to sleep and said it didn't bother him through the night.
Today was a little better, although he is limping and not putting any pressure on the one leg. He said it still hurts very bad.
The day didn't get any better, by early afternoon he started feeling yucky and had vomited. By 2:00, he developed a temperature of 38.3. Because he is neutrapenic, a temperature of 38.5 or more warrants a hospital stay for precautionary measures. He would start IV antibiotics ASAP. At 4:00, it was 38.4, so I called ahead to the hospital to make arrangements for him to go in, and reserved my right to call and cancel. At this point he didn't look well, and he was just lying around looking pretty sad. By 6:00, his temperature went down to 37.5, and he started to play with Aaron - he was actually first to finish his supper! Although he looked tired, I think he felt alot better come bedtime. At last check (11:30), his temperature was 36.7 (under his arm).
So we'll see what tomorrow brings. I have two concerns and hope we can get through the day alright. I'm hoping he wakes up tomorrow without a temp. I'm also very concerned about his platelets. Day 12, which is Sunday, has been the day his platelets have dropped as low as 6 using this combination of chemo. Friday (Day 10) his platelets were 19. With any temperature, platelets are depleted fairly quickly, so I'm worried about the risk of spontaneous bleeding. Obvious signs that platelets are too low would be nose bleeds, little broken blood vessels (which he does have on his cheeks), or blood in stools. Less obvious would be internal bleeding, which is something that is always worrisome.
So for now, he is sleeping peacefully. If I know Austin, he will jump out of bed tomorrow morning like there's not a care in the world!
Take care,
Love Beth
Wednesday, October 10, 2001 at 10:21 PM (CDT)
Hello everybody,
Austin is as always doing remarkably well after receiving his chemotherapy last week. He is on Day 8 today, we should notice some side effects of the treatment as early as tomorrow.
He has managed to enthusiastically attend school yesterday and today without being worse for the wear. It really has been a blessing to be able to send him to school, it really has had a positive effect on him. I can tell he really looks forward to going, just the other night I put him to bed, and about ten minutes later walked past his room to see that he was fully dressed lying there. I asked him what he was doing, and he told me that he didn't want to be late for the bus in the morning, so he thought he would get ready now. When I told him to get back into his jammies, he wanted to know why we couldn't invent a bed that lifted up in the morning to slide him into his clothes, and as he was walking out of his room, a toaster would send his toast flying right into his hands, so that he could go straight outside to wait for the bus. I think he's been watching too much TV!
Check out the new pictures, Austin's first day of school, his first "missing" tooth, and his "straw" house that he built while in the hospital last week. I forgot to mention that Austin lost his tooth while we were in the hospital. It was quite the event as all the nurses had to come to check out the situation. Must be a male Davis tradition, both Aaron & Austin swallowed their first lost tooth. Austin made sure he wrote the tooth fairy to tell her that he still wanted money even though he didn't have his tooth. He went as far as trying to fake her out with popcorn shaped like a tooth. Hmmmm ... Oh well, he was pleased to see a Toonie under his pillow the next morning, he wasn't quite sure she'd fall for it :-)
That's about it for now, I will update after our clinic app't on Friday.
Take care,
Love Beth
Friday, October 12, 2001 at 4:09pm
Clinic visit was short and sweet. Austin's counts are just above the transfusion marks, so we'll check again on Monday. His hemoglobin is doing well at 91, platelets were 19. He is neutrapenic, which means his immune system is very low and is unable to fight off germs and bacteria. So this weekend will be spent at home away from all those nasty bugs out there!!
He felt well enough to make a quick appearance at school to have pictures with his class done :-)
Have a good weekend,
Love Beth
Sunday, October 07, 2001 at 06:30 PM (CDT)
Austin and I just got back from his five day chemo, it's good to be home!
Our week started out with a clinic visit to check counts and get the results from last week's bone marrow test. For ONE WHOLE DAY we got to walk on clouds as we received news that BOTH the aspirate and biopsy were negative. This was short lived though, as we received a phone call the next day to inform us that after testing the biopsy further, they detected clusters in the bone marrow. Although this was somewhat disappointing, it is still TERRIFIC news. Austin is still responding to treatment, and in comparison to the bone marrow taken in July, there is a remarkable improvement. So for now we will continue using Topotecan / Cyclophosphamide.
Austin was admitted for his seventh round of chemo since relapse on Tuesday night. For the first time I can remember, he actually had a tear rolling down his face when we told him it was time for his sleepover. That all seemed to change though when he heard the good news about his bone marrow. He must be so tired ...
Chemo was very uneventful and Austin pulled it off without a glitch. He kept pretty busy, so time seemed to have went by fairly fast. This week was the first time that Austin was assigned a classroom teacher. Now that he is in Grade One, he is able to benefit from the school room at the hospital, although the teacher came to his room this time around. He is scheduled to do school work for about one hour a day with the teacher. Not only is this a great one on one session, his school counts this counselling as attendance. He will not be marked absent from class when he is at the hospital.
Along with the teacher, Austin had alot of Child Life therapists come to play with him. He spent some time doing crafts, painting and coloring. He even made a house out of straws big enough for him to sit in and play. It was cool.
If all goes well this week, Austin's next appointment is on Friday. This should be around the time his counts will be bottoming out, and more than likely require blood transfusions.
Thursday marked two years since Austin's stem cell rescue in Toronto. It is hard to believe that two years has gone by, until I think about everything that has happened since. Austin enjoyed one full year of good health!!, we went through a pregnancy and now have a 16 month old baby!!, and it has already been one year since Austin's scans came back with suspicious results.
Tomorrow we celebrate Thanksgiving. We certainly have alot to be thankful for, that's for sure! Hope everyone has a terrific weekend, we will update soon,
Love Beth
Thursday, September 27, 2001 at 07:36 AM (CDT)
It's so quiet here. The kids are gone to school, Erika is still sleeping, so I thought I would give a quick update.
Austin continues to go to school daily. He seems excited to be going and is the first one up and ready in the mornings. He made a new friend on the bus, who has been giving him Pokemon cards - today he was very anxious to get to school to
see if his friend had anything else for him. He's looking for a MewTew. I'm hoping that Austin starts to form such friendships at school. At recess, he only plays with Amber & her friends. As
I recall, Amber did the same thing with Aaron the first few weeks of school. Last night was meet the teacher night, so I went to check out the kids classrooms. In Austin's desk, there was a picture of his family. It was so cute. I opened his printing book, and saw the letters he had done all on his own. It made me want to cry that he is doing so wonderful in school. His little "e"s were perfect, just like him!!
Tuesday was Austin's bone marrow aspirate / biopsy. We should have the results by the end of the week hopefully. Austin was super as usual. He had no problems with the sleepy medicine, and the sites look good. Still haven't heard back about the CT Scan. His counts were great, hemoglobin 117 !!, platelets 47, and white count was 31. This is the highest the white count has responded to the neupogen since relapse. Hopefully this means he will start to recover faster, and we can get these chemos closer together, as rounds are supposed to be spaced 3 weeks apart, not 6 weeks.
That's about it for now. Austin's counts will be checked again next Tuesday, and if platelets are high enough, he will be
admitted to the hospital and begin another round of chemotherapy. We are still trying to sort out our next step in Austin's treatment plan.
Take care,
Love Beth
Saturday, September 22, 2001 at 02:23 PM (CDT)
Hello,
One of the hardest parts of being a parent of a child with cancer, is knowing how much information your children can handle, and how to tell them in a way that won't frighten them. Fortunately, Aaron, Amber & Austin all make this part of our job alot easier! I sat them down last week after days of worrying about how I was going to tell them about what will be happening in the next little while.
I asked them if they remembered what had happened when Austin was three? They replied "He had a lump in his belly, and he got cancer". I asked them what had happened when he was four? They replied "He didn't have cancer anymore, his lump was gone" When I asked them what happened when he was five? They replied "His crumbs came back". (We call the disease in his bone marrow "crumbs"- kind of a long story, but it started out by using "Sam the Snake" to help eat away his lump, (Austin's rubber snake that he brought with him to protect him through every chemotherapy, and making sure he was in every surgery to eat the lumps all gone - he was a very hungry snake!) , but the lump had a baby (in
Austin's chest) before Sam the Snake could eat the big Mommy lump. When both lumps were gone, we had to explain that there was still disease. So, Sam the Snake had been a little bit of a messy eater, and left crumbs in Austin's bone marrow). Anyway, when I asked them what chemotherapy was? They replied "Austin's medicine to help the cancer go away". I asked them who they thought made the medicine for Austin? They replied "The doctors". I asked them if they thought whether or not the doctors were always trying to learn new ways to help cancer go away forever? They didn't hesitate to say yes. I told them that Mommy & Daddy have learned about a new kind of medicine that might help Austin's cancer stay away for good this time. They all seemed excited, and wanted to know when Austin could do this. I told them that this is where it gets a little confusing, that this medicine wasn't here in Canada, we would have to go to the United States to get it. They cheered, saying that was very cool. Of coarse, that's where Grampie & Bonnie live, so they have no reserves about going there. They are already planning sleepovers for their visits to see Austin when he is gone. I also asked them if they knew who payed for Austin's medicine? To my surprise, they replied the government. This made it easier to tell them that the government sometimes doesn't pay for medicine when we aren't in Canada, so we would have to raise the money ourselves just in case. All three perked up in their chairs, and Austin said "Well, we'll just have to sell alot of lemonade". MY KIDS ARE AMAZING!!!!!!!!!!!
So, today Austin sold lemonade. In just over three hours, he made $150.00 Thank you to everyone who stopped by for a drink! The kids were very proud of their "haul", and I am very proud of them :-)
When we were driving home, Austin had asked if I wondered why he was drinking so much lemonade today? When asked why, he replied that he drank six cups so that he could make more money for his medicine. I didn't realize that when he was pouring his drinks, he was actually putting his "garage sale spending money" in his "lemonade box". God bless his little heart :-)
On the medical side of things, Austin continues to feel good, as always. He had a super week, and actually made it to school FOUR whole days this week!!! He had to take leave on Thursday as we had a clinic app't, and a CT Scan. His counts were fairly decent, his hemoglobin was a whopping 111, his white count was 9.5 thanks to the neupogen, and his platelets are dragging behind at a very low 18. This worries me as there is no slowing Austin down, and the risk of spontaneous bleeding is high. He has no qualms to get himself up on the monkey bars, and up and down slides, and climbers, no matter how many times he is told not to.
His MIBG Scan and Bone Scan have both been confirmed as being negative, so this is good news! He has a bone marrow aspirate / biopsy scheduled for Tuesday. Please remember Austin in your prayers on this day for little or NO disease!
Glen and I would like to thank all of you who are supporting our decision to take Austin's treatment one step further. We are very blessed to have such a large group of friends and family standing behind us all the way! As you keep Austin in your prayers, we hold each of you in ours!
Love to everyone,
Beth, Glen, Aaron, Amber, Austin & Erika.
Monday, September 17, 2001 at 01:55 PM (CDT)
Hello,
Austin is feeling good as his counts seem to be on the upswing. He still seems quite energetic and other than a tiny bleed from the nose on Saturday, platelets seem to be holding on as well. He went to school on Friday, and again today.
As some of you might be aware, we have started fundraising for Austin in the hopes that he may receive some form of immunotherapy in the United States. Canada does not have an institution that provides these treatments. At present, a hospital in New York City has a trial that might be suitable for Austin. Tests are being performed to determine his eligibility. Treatments could begin as soon as October if he indeed is eligible, so we are on a mission to raise enough money that Austin wouldn't be held back due to lack of funds.
Although Austin continues to tolerate chemotherapy wonderfully, we cannot continue this pace forever. At some point in time, Glen & I, along with our doctors are fearful that his cancer will begin to progress. Once that happens, our options are very limited, and the chance of cure would be very unlikely. As it stands now, the chance of cure for relapsed nb using chemotherapy alone is nothing short of a miracle. We have been told by several doctors that we can only extend Austin's life by using this method, but in real fact, it will not provide a chance for survival.
With this knowledge, and the knowledge obtained through the most incredible support group of parents of children with neuroblastoma, along with the support of all Austin's doctors, we are very hopeful that using Monoclonal Antibodies (or another form of immunotherapy), can offer Austin the best chance for survival.
What is the theory behind antibody therapy?
All of us fight bacteria and viruses with our immune system, which is made up of cells and antibodies. Antibody seeks out what it views as harmful to the body and destroys it. Chemotherapy does not select for tumor cells. It, therefore, destroys a substantial part of the immune system, diminishing the body's ability to fight well. When antibodies are administered, they travel in blood and visit various organs to find the residual tumor cells and to eliminate them. Antibody relies on the body's white cells and complement proteins to fight tumors. As the body regenerates its immune system following chemotherapy, it can be taught to fight these tumors on its own.
What is a Monoclonal antibody?
3F8 is the name of a substance called a monoclonal antibody. It attaches to GD2, which is a marker on the surface of neuroblastoma cells. It is produced from the white cells of mice.
That's about the jist of it. As Austin continues to recover from his last round of chemotherapy, he will begin testing to confirm his eligiblity.
I have started a web page to separate the fundraising from this journal. Please keep checking as new things will be happening all the time.
http://www.caringbridge.com/canada/austin.donations
What can you do to help?
Please offer your prayers for health and healing for Austin.
Please get the word around that we are raising money for Austin.
We have flyers if you would like some to distribute.
If you are interested in organizing a fundraiser, please email.
Keep checking the other web page as we will be asking for help periodically for different fundraisers.
Thank you all for your support over the last three years. It has given me the strength and determination that I need for this long road ahead.
Love to everyone,
Beth
Thursday, September 13, 2001 at 03:10 PM (CDT)
Good afternoon,
Just a quick update to follow up on yesterday's journal entry.
Austin had his MIBG scan this morning. After yesterday's red blood transfusion, I can tell you I couldn't keep up with him today. He was running down hallways, bouncing up and down and best of all has had a smile on :-) all day.
He was being quite silly and tricked a few people with his "whoopie cushion" he had picked from the treat box yesterday. He put on a puppet show in the playroom for me which was pretty comical. He has not stopped talking :-) all day.
His scan went well, there is no need to repeat a 72 hour MIBG. Hopefully I will have the results by next clinic visit. Again, I didn't see anything obvious - let's hope the doctor doesn't either!
Take care,
Love Beth
The doctor called this afternoon to tell me that the radiologist has looked at the scans quickly and he didn't see anything. He will take a better look this afternoon to confirm that both tests are negative.
Wednesday, September 12, 2001 at 07:35 PM (CDT)
Hello everybody,
First off, I want to offer my prayers for all those who lost their lives and for the families of those victims in yesterday's devasting and most unbelievable attack against NYC and Washington. Please God give these families the strength to endure the next few days, weeks, even years, to try to come to terms with what has happened. It is a sad day for all, American or not, to believe that this evil exists among us.
Yesterday we were at the hospital, there was not one room that didn't have the television tuned into "The Attack on America". Austin even asked if this was the "only" show on today, he made note that everybody seemed distracted in some way.
Monday Austin had a fingerpoke, and we were all pleasantly surprised that his counts were above the transfusion mark. Although no transfusions were needed, Austin didn't seem his normal self. He was very sluggish and barely made it through the day on his feet. His hemoglobin had gone up from Friday's 82 to 85, so I wasn't sure why he was so tired. Platelets were 26, not so great considering he had been transfused on Friday. White count has climbed up and the bout with neutrapenia is over. Granulocytes were 1.1. Although this is well below normal, it is high enough to fight off infection / viruses. It is also high enough to attend school, which he would've except for the leg pain he was experiencing. Monday morning his leg started to hurt "very bad" and by afternoon he had a bad limp. We're not quite sure why he is experiencing this pain, so I was glad our doctor booked a bone scan the next day. As the day went on, the limp wasn't as obvious and he said it felt better but still hurt.
Tuesday morning he woke up and said he felt better, although he was still limping. He still seemed very sluggish and I had a hard time walking with him from the parking lot to Nuclear Medicine. Before a bone scan, an injection is needed, so before we left I gave Austin the option of having the injection in his port or his hand. He decided on his hand, so we put Emla Cream (to numb the skin) on both hands. The pediatric IV nurse had come down to access him, and failed in both hands. She then had to go to his arm, where there wasn't Emla Cream, and do it there. He also needed an injection two hours later for the MIBG Scan he will be having on Thursday. Instead of leaving the line inserted they removed it and put Emla Cream on his other arm for later.
His energy level seemed to be tapering off through the day, so before his scan we had a fingerpoke. Hemoglobin had dropped from the previous day to 74 and platelets down to 12. I thought he would be transfused that afternoon, but they said it was too late to do it in clinic and if I wanted to we could have it down in Emergency. I passed on that, and we booked in for Wednesday.
The Scan went fine. I'm not a Nuclear Technologist or anything, but I didn't see anything obvious on the scan, at least not on his leg. Of coarse, we'll let the doctor have a look and see what he says.
This morning Austin had yet another fingerpoke. Today's results were puzzling, his hemoglobin was back up to 82, above the transfusion mark. After a discussion with Austin's doctor, we agreed that he could use the boost and decided to transfuse. He also needed platelets as they fell down to 6. He seems to look better already, I'm hoping his mood was a direct result of low blood counts.
Tomorrow we are back for a MIBG Scan. This requires him to lay very still for about half an hour. He's a super patient, and the girls in Nuclear Medicine just love him. Prayers for a clean scan are welcome!
Will update as soon as we hear anything.
Love Beth
Friday, September 07, 2001 at 03:07 PM (CDT)
Hi everyone,
It's been a busy week to say the least. The kids are getting settled into a new routine now that school has begun. Austin was pretty persistant about going to the "first" day of school. After careful thought, we agreed that it would be a great way to start the school year off. He attended his first day in Grade One, and from the sounds of it, he had a good day. Our main objective for him is to learn how to read this year. He's off to a great start, he's already covered the letter "s" and the letter "a". He is eager to learn, so the homework that is brought home for him gives him something to look forward to.
Since he is only in the first week after completing his chemotherapy, we have kept him home for the rest of the week. His blood counts have started to bottom out, hopefully they will be on the rise as early as next week when he'll be able to go to school. Today his hemoglobin was 82 (normal range 104 - 145) , platelets were 6 (normal range 150 - 450), and his granulocytes were 0.1 (normal range (1.8 - 7.0). Since his platelets were so low today, he required a platelet transfusion. Because of his very low grans (white cells) we have to take special care to keep the "germs" away. Even with these low blood counts, Austin still looks great and is in good spirits.
I will be updating again soon with some details of our "new" treatment plan for Austin.
Love Beth
Saturday, September 01, 2001 at 11:13 AM (CDT)
Hi everybody,
Austin's 6th birthday was wonderful. He woke up to the kitchen decorated in Pokemon paraphanalia and a box of "Oreo" cereal, the one he had been bugging for a month to get but got resistance from Mom who thought eating Oreos for breakfast wasn't the best way to start your morning. (It ended up that he didn't like them anyway).
We spent most of the day preparing for our corn roast, but centered it around it being Austin's special day. He was very surprised to have a delivery man come with a huge assortment of balloons! Thank you Brenda :-) Shortly after, another surprise was delivered, the famous "Calvin's Magic Bouncy Castle". It has somewhat become tradition for Austin on his birthday, and although it was kind of expected from the kids, we didn't let on that they were indeed getting it, so they were pretty excited when it did arrive. Austin was doing in the air somersaults and going crazy on the thing ... he had alot of fun.
After dinner, relatives arrived and we did the cake & ice cream thing. Austin was happy with all the presents he got, and all in all it was a great day.
Saturday, Glen & I hosted the "30th" annual Cormier Corn Boil. We had a great day, the weather was perfect and everyone had a good time (I hope). Thank you to all those who came and made it such a good day. The kids had alot of fun!
On Sunday we enjoyed lunch with the die hards - have we started a new tradition here??? Thanks for having us join! After leaving lunch, we took the kids bowling - the first Davis family bowling outing. It was fun, something I'd like to do again. Austin has been asking to go bowling and mini-putting all summer, unfortunately it was pouring rain, so we couldn't do the golf thing. When we finally arrived back home it was time to pack and get Austin to the hospital, as he was admitted to start another round of chemo.
His chemo started on Monday for five days. Everything went smooth, he felt good. To tell the truth it was really hard to tell he was even receiving his chemo. He was in good spirits the whole week, he even did alot of socializing which is odd for him - he's usually so quiet. He made a new buddy, Cory, who shared his room and played Nintendo with him two days straight. He was sad to see him go, and wasn't quite the same once he left.
We came home yesterday, and he has been feeling good since. He had a good sleep and was raring to play today. The kids are downstairs now playing "band", they have made up their own instruments and are experimenting with their musical talents.
Will update soon,
Love Beth
Tuesday, August 21, 2001 at 09:37 AM (CDT)
Hi everybody,
Austin continues to recover from his last round of chemo. His counts yesterday were good, platelets are on the rise (53) but not high enough to start the next round. Since this weekend promises to be a busy one, we will skip Thursday's fingerpoke and be admitted Sunday night. By then his platelets will be over the threshold of 75 and he can begin chemo on Monday.
He is excited about his birthday and has been counting the days. He wanted to know if ALL the kids in his class could come to his party. After two minutes or so he thought about it and realized he didn't know any of the kids in his class, so he changed his mind. Whew!
The kids are enjoying their last couple of weeks of summer, it seems to have went by pretty quick. They've been so good playing together, without too many complaints. Aaron & Austin have become sooooo close over the summer that Austin will miss having the company around come September.
That's about it for now,
Love Beth
Wednesday, August 15, 2001 at 09:45 AM (CDT)
Hi everybody,
Not much has been happening around here. Each day seems to come and go, and I can't believe it's already the middle of August. Austin has been feeling good, we're just waiting for those platelets to come up so he can start his next round of chemotherapy. The ideal timeframe would be 21 days in between chemos. We are now on Day 27. We'll find out tomorrow what his platelets are, on Monday they were 43, but that could be misleading as he had been transfused last Friday.
It is very likely Austin will be spending his 6th Birthday in the hospital. This wouldn't be the first time, he spent his 4th Birthday as inpatient. Although it's not the first place you'd choose to celebrate a Birthday, the important thing is that we're celebrating a Birthday!! 6 years old, WOW!!
Erika is feeling much better, her teeth are popping in slowly. After her bout with high fevers, she developed a bad rash all over her body. Since it was the long weekend, I didn't bother to have her checked, but I'm sure that she had what Austin had last summer. It's called Roseola and it's viral. Once her rash went away (2 days), she was fine. I finished off her antibiotics just in case it was her ear. Who knows??
Austin received a post card from his teacher saying she's looking forward to seeing him in September. He seems excited to be starting Grade One, but he's a little concerned that he doesn't know how to read yet. We plan on sending him to school when he's able, hopefully more times than not :-) I will be meeting with the school in the next couple weeks to discuss a home tutor for when he cannot attend.
Anyways, that's about it. Pretty quiet around here. Looking forward to the 25th!
Love to everybody,
Beth
Friday, August 03, 2001 at 11:36 PM (CDT)
Hello again,
Had a little scare in that the "History" part of the web page was wiped out. Thankfully Caringbridge came to the rescue and restored the page last night. It seems they had some problems and quite a few web pages were corrupt. Just a reminder for those of you with Caringbridge webpages - always keep an extra copy hanging around somewhere!
Now for Austin .... as always, he is doing remarkable. He looks fantastic and feels great. The really good news is that his bout with "neutrapenia" lasted only "4" days!! What a big difference I'll tell you. This compared to "three weeks" is a blessing. His face lit up today when I told him. This gives him the opportunity to take advantage of our tickets to Merritville Speedway tomorrow night! He is so excited, he can't wait. He had to miss out last weekend since we weren't sure of his counts.
The week was fairly quiet. We were booked for clinic on Monday, but Austin looked and felt fine. His energy level was no worse for the wear, and his platelets seemed fine as there was little bruising. So for the first time I can remember, I called the clinic in the morning and cancelled to rebook for Tuesday. Sometime Monday afternoon his counts must have taken a dive as he seemed a little tired and had a few bruises that weren't there that morning. Sure enough on Tuesday he needed platelets (7) and red blood (78). Wednesday and Thursday he seemed a bit more subdued (is that the word?) but has bounced back full force today. He needed platelets again this afternoon (13), but hemoglobin was well above the transfusion mark (100). White count was 2.5 !!!, and neutraphils were 1.3 !!! This is typical of the chemo drugs he is receiving and he seems to be following the same pattern as he did two years ago while on the same combination. I'm still not quite sure he will recover as fast as he did way back then, only time will tell. He is supposed to start the next chemo one week today, but I'm sure his platelets will need more time to jump up to a respectable number.
It's interesting to see the difference between the different drug combinations. When he was doing the ICE, I figured he wasn't bouncing back quickly because of the extensive chemo he had received in the past. It's obvious that the ICE was extremely hard on the bone marrow.
Just another note: Austin got through this round of chemo without a fever !!! Yehhhhhh!
So instead the thermometer shifted it's attention to our little Erika. Wed / Thurs. she was spiking fevers of 104 plus. I noticed on Wed. her third bottom tooth looked like it was ready to break through and figured it probably had something to do with it. Later on, I took a closer look and discovered that she isn't just getting "one" tooth, but she is getting "six" teeth all at once. Four molars and two front bottom teeth - OUCH! Poor baby. To add insult to injury, I took her to the doctor's this afternoon and it looks like her ear is infected. I started her on Amoxicillan tonight, so hopefully she will feel relief as early as tomorrow.
That's about it for now - we have a good break before our next clinic app't. Have a great long weekend,
Love to everyone,
Beth
Thursday, July 26, 2001 at 02:33 PM (CDT)
Hello everybody,
Austin is home and hasn't sat down once. He is bouncing all over the house. He is running, jumping, eating and best of all smiling all day long.
The five day hospital stay went well. Austin has completed his first round of Topotecan and Cyclophosphamide and seems (knock on wood REALLY HARD) to be tolerating it good (actually - excellent!). Other than vomiting once the first night, he felt good the whole week. He ate more than I've ever seen him eat while inpatient which was great to see.
His counts will be checked tomorrow in clinic. He left on Tuesday with a platelet count of 94 (it actually went up to 120 on Monday), and the hemoglobin 88. Hopefully they'll hang in there a few more days :-)
Hope everyone is well, will update soon,
Love Beth
P.S. New pictures are up.
P.S.S. Something is wrong with the "history" part of the webpage, I'm hoping it is fixed soon - I would hate to lose all the updates, I don't have it copied anywhere :-(
Wednesday, July 18, 2001 at 02:01 PM (CDT)
Hello again,
Well the tests are done and we can breathe a little easier. Austin as always was incredible and was the perfect patient for all the nurses / techs.
Monday morning started early with a breakfast drink consisting of "Sprite" and "CT juice". Mmmm Mmmm. For desert, a dose of Benedryl. After a breakfast like that who wouldn't want to nap? After a quick nap and an injection of "CT contrast", his scan went smoothly and off he went to have some xrays done. After xrays, he got to move on to Nuclear Medicine, where he had his injection for the bone scan followed by a two hour break. Lunch at East Side Marios which included chicken wings, french fries, 1 1/2 loaves of ESM bread, and an ice cream cone for desert. Oh, and of coarse another "Sprite". Back for bone scan and yet another injection for his MIBG Scan. Kraft Dinner for supper, a couple of glasses of milk and can't forget those 5 drops of iodine he took with "Coke" before bed. IS IT SO WONDER??? that he vomited like I never seen him vomit before - WHOA it was bad. After he was done, he rubbed his belly and said "that feels better" and off he went to bed and slept through the night like a baby.
Tuesday was spent on the beach (Port Maitland) with friends at their cottage. (Thanks guys!) The kids had a great day. Austin was covered in sand from the time we got there until the time we left. When the doctor checked his ears today I had to warn her that there was probably sand castles in there. She definitely saw sand, she even asked her student if she wanted to see what "sand in the ear" looks like. I'm not sure what the fascination is, but he just loves to roll in it, be buried in it and have it dumped on his head. He was hillarious.
Today Austin had his MIBG scan and an ultrasound. Both went smooth, and we were finished in time to head up to the clinic to talk to the doctor about our "plan". It was decided that Austin will be admitted tomorrow night for 5 x days of Topotecan / Cyclophosphamide. His counts were all good, hemoglobin 107, platelets 93, WBC 2.5, grans 1.1.
The Topo/Cyclo combination is just as intense as the ICE. We have no idea how he will respond or how long it will take him to recover. Only time will tell.
Will update soon,
Love Beth
P.S. Almost forgot:
Bone Scan / MIBG Scan - normal :-)
CT Scan - normal :-) (same as previous - 1 enlarged lymph node)
Ultrasound - normal :-) (same as previous - 2 - 3 enlarged lymph nodes)
Sunday, July 15, 2001 at 01:20 PM (CDT)
Hello everyone,
Austin continues to feel good and is on his way to a full recovery from Round 4 of ICE. His counts are coming up nicely, platelets were 62 on Friday, hemoglobin 96. White count is a bit low because we have stopped the neupogen injections. All in all though he is feeling good and looking great.
Another busy week for us ... clinic x 2, lunch at Hutch's - throwing rocks into the ocean as Austin calls it (Lake Ontario), a day at the beach (St. Catharines) swimming & digging holes, visiting & visitors, and Canada's Wonderland yesterday.
Wonderland was alot of fun, courtesy of Help a Child Smile. We met alot of families that we have gotten to know over the last 2 1/2 years, some with kids off treatment and doing wonderful, and some who have lost their child to this horrible disease. In each case, it was good to see everyone again. The kids had a great time and were looking so forward to going. We spent most of the day doing the rides. The kids did some pretty "big" rides, they shocked me - I pictured them coming off in tears, but they came running off wanting to do them again and again. They were pumped. It was a good day, I can't wait to do it again next year!!
As I mentioned in my last update, Austin's bone marrow biopsy came back positive. At this point I'm not sure how much disease was found as the pathology report has not come back yet. Regardless of how much the fact is that there still is disease in his marrow. We met with the doctor on Friday and discussed our options at this point. Between the four (WOW!) oncologists we now have at Mac, they have come up with the following. As the doctor said to me, let's put our options on the table:
1. Do nothing.
Let's take that right back off the table - THIS IS NOT AN OPTION for us or the doctors at this point.
2. MIBG therapy.
Because disease is only in the marrow, this is not an option. Austin's last MIBG scan was negative.
3. Antibodies - New York.
Not eligible. Minimal Residual Disease is required which means no detectable disease. At this point this is not the case - but ultimately is our goal.
4. Fenretinide.
Is now a Phase II study, but currently is not available in Canada. Waiting for US to ok it, might be a couple months yet. Minimal Residual Disease would be preferable before starting Fenretinide (my note).
5. 5th Round of ICE.
Austin has completed four rounds of ICE and is in excellent health. ICE is an extremely toxic cocktail consisting of Ifosfamide, Carboplatinum and Etoposide. The "I" in ICE, or Ifosfamide is really hard on the kidneys. Up to this point Austin has maintained healthy kidney (liver & heart) functions. From what I understand nobody would do more than six rounds of ICE. After the fourth round, our doctors believe the risk to kidneys is extreme. Of coarse you always have to weigh out the risk factors, and in doing this in Austin's case - the ICE doesn't seem to be making a significant difference. This definitely doesn't justify continuing when there is such a big risk of kidney damage or worst yet kidney failure. We were both in agreement and to tell you the truth, I was relieved to hear there will be no more ICE.
6. Topotecan.
This is the chemo drug that Austin was on last time he had persistant bone marrow disease. In combination with Cyclophosphamide, it worked well (although it took 6 rounds) to clear his marrow.
I wondered why they didn't do this in the first place, but now can say I'm glad he did the ICE which did eradicate the disease in the bone and most in bone marrow. We are all in agreement that it is time to change the plan, and it has given Glen & I new found hope.
The only glitch is I'm not sure if they're planning to use the Cyclophosphamide. I will be pushing for them to do so as I feel strongly about it. The risk to the kidneys comes into play again. They are consulting with their doctor friend in the States (Dr. C. from Alabama) to get his opinion on the combination. We will find out on Monday, and hopefully be admitted soon after to start the chemo.
Tomorrow Austin has a full day ahead of him. CT Scan & skeletel xrays 9am - noon, Bone Scan injection - 12pm, Bone Scan 2pm, MIBG injection 2:30. Wednesday he has his MIBG Scan & ultrasound. Thursday his hearing test, Friday his echocardiogram. WISH US LUCK!!!!
Will update soon,
Love Beth
Tuesday, July 10, 2001 at 11:15 PM (CDT)
Hi everybody,
The results from Austin's latest bone marrow biopsy are positive for neuroblastoma. We will be discussing our next step with the doctor's on Friday. More than likely Austin will begin Round 5 of ICE sometime next week.
Love to everybody,
Beth
Saturday, July 07, 2001 at 03:08 PM (CDT)
Hello everybody,
It's been a pretty busy week. Monday we spent the afternoon in Niagara Falls, we had dinner at the Rainforest Cafe. That was pretty cool, they just opened on Clifton Hill. From the street you see a huge (60ft I think) volcano, and when you walk inside you feel like you're in the jungle. It has life like snakes, an alligator, elephants and gorillas who all move so real. The kids really liked it. Afterwards the kids did the Fun House and the Haunted House, we went for ice cream and a short walk. We always enjoy our trips to the Falls. On the way home we stopped to take a peek at the races at Merritville (just watched from the road). The boys really want to go see at race. Luckily and unknown to them, Help A Child Smile is sending our family (along with other families from Mac) to a race in August. Can't wait!
Tuesday Austin had a clinic app't. His counts were all above the mark for transfusions.
Wednesday was a day off, we hung around the house and had company in and out all day.
Thursday Austin had his bone marrow aspirate / biopsy done. His platelets were 20, not the most ideal for this procedure but they went ahead anyway. All went smooth and I expect to hear the results sometime next week. Austin is getting to be a pro at his "sleepy medicine". He walks into the procedure room like it's routine. Hops up on the bed with the I'm ready attitude. I'm not sure if it's because he's getting older or just learning to relax more, but he catches a bit of a buzz before they inject the sleepy juice. They give him something to relax and it seems to take effect as fast as it goes into his tubes. He goes from such a serious little face to a big watermelon smile, and starts to talk a mile a minute with little giggles in between. When they put the oxygen mask on he made the comment (in a big loud voice) - "There's no way I'm going to fall asleep with this thing on - it's stinky". Two seconds later he was fast asleep. It was too cute.
Friday Aaron & Amber both had friends from school over and both stayed for a sleep over. Austin enjoys the company alot, so it was fun for everybody.
That's about it, the week flew by ... I will update as soon as I hear the results from Thursday.
Love to everyone,
Beth
****** CHECK OUT THE NEW PICTURES **********
Hello everybody,
Well it took 21 days, but Austin is finally over his bout with neutrapenia. His white count has started the climb, even at 0.6, this makes him over the mark for isolation. His platelets (6) and hemoglobin (76) fell once again requiring two more transfusions. All went well this time, he was premedicated with Benedryl and given concentrated platelets (all the white blood cells were spun out). This seemed to have worked, no reactions were spotted. We will still have to keep a close eye though because he might react to each transfusion differently.
Since his counts are on the rise, this allows Austin to play with other children more freely. Yesterday he went swimming for the first time this summer. All the kids had a great swim. Aaron was doing awesome somersaults off the diving board, Amber was practicing her somersaults in the water and Austin was having a good time jumping off the side / diving board into a tube. Erika spent the afternoon with Nana as the sun was just too hot (it was 100F poolside) for her. Aaron and Amber have enjoyed having their friends being allowed back for visits, Austin likes the company too!
Next clinic visit is booked for Tuesday so this gives us a good break from the hospital. Although Austin has done amazingly well and has managed to stay away from being inpatient like some kids seem to have trouble doing, it is still very tiring and time consuming. I think both Austin & I need a break - so we plan on forgetting about that place for a few days and enjoying this great weather we've been having.
Our home nurse should be here soon to insert the catheter in Austin's arm used for Neupogen injections. He was scheduled to have one placed tomorrow, but this morning he woke up and it had fell out through the night. I think the four hours of swimming yesterday had something to do with it :-)
Have a great Canada Day weekend!!
Love Beth
June 29 - March 29, 2001
History Not available for this timespan.
Thursday, March 29, 2001 at 01:18 PM (CST)
Hi,
As it seems to be the pattern, with every inch of good news there is always a foot of bad news right behind it.
The results from Austin's bone marrow biopsy came back. His bone marrow is still compiled of about 35% neuroblastoma cells. The doctors feel that after two rounds of chemo, we should've had a better response. His VMA/HMA levels were around 35. This is high and determines the amount of neuroblastoma disease in the body. As of Monday, 5 weeks after chemo, his platelets were 16. He is suffering from thrombocytopenia, which simply means he is not producing platelets.
So for now, we are in no where land. The combination of low platelets and bulk disease is getting us no where fast. Hopefully by next week, we will have a plan in motion.
Monday he will be repeating a bone scan, Wednesday MIBG Scan.
On a brighter note, Austin is feeling much better. He had been feeling off for just over a week, looked so tired and pale. He looked lost. We were concerned, doctors included, that he has started to feel this way because of the disease. On Monday, he started a prescription to relieve some diahhrea, which he had for over a week. Tuesday morning, it was like looking at a totally different kid. He went to school Tuesday afternoon and again this morning. He will be going tomorrow too. It took a bit of persuading to get him there the first time, but once he was there he was fine and had a good afternoon. He was looking forward to going this morning and his teacher said he had a morning full of smiles.
Please keep Austin in your prayers, as well as all the kids who are fighting this terrible disease.
Love to everyone,
Beth
P.S. Finally put some new pictures up. Check them out!
Saturday, March 24, 2001 at 04:40 PM (CST)
Hi everybody,
We had a bone marrow aspirate / biopsy done on Tuesday following the
second round of chemo.
Following the procedure we usually receive a phone call the same evening
with results from the aspirate. As of this morning (Friday), we hadn't
heard anything. Of coarse that sent my mind flying, and I thought for
sure today was the day we would be having the "can't do anything more"
conversation.
Because Austin's counts are relatively low, there weren't alot of cells
in the aspirate to look at, BUT from what they did see, they didn't see
any neuroblastoma cells!!! Both sides :-) WOW. At least that's what
I think he said, I was too shocked to hear his exact words. Maybe he
said a couple, maybe he didn't, I'm pretty sure he said none. I know
that I saw him smile, don't think I've ever seen him smile :-). He said
he didn't believe it either, so he sliced it 22 times (I'm guessing that
means he was thorough??), whatever that means.
We are now waiting for the biopsy to come back to confirm these
results. We will have them by Monday. Even if there are few nb cells,
which I'm sure there are, this is certainly better news than we could've
ever hoped for.
On goes the rollercoaster ride of our lives ....
Take care,
Love Beth
Monday, March 19, 2001 at 07:33 AM (CST)
Hello,
Can't believe March break has come and gone. The birds were singing this morning, I CAN'T WAIT for Spring!!
The kids had a nice week at home. We didn't do anything spectacular, just stayed around the house pretty much. Nana and Aunt Ellen took Aaron and Amber to Disney on Ice / Beauty & The Beast. Aaron had a hockey tournament out in Simcoe on Thurs/Fri/Sat. It was pretty exciting. They won the first game, lost the next two. Oh well, it was fun for them anyway.
Austin is feeling good. He looks great, I can't believe what he's been through to look at him. He has spent the last three days playing Pokemon Stadium. We rented it, so it goes back today. He has played NON STOP.
His bone marrow aspirate / biopsy was postponed until tomorrow. There was a staff shortage on Thurs. We went back to clinic on Friday for counts, his platelets were 6, so he needed transfusing. Other than that everything seems to be going good. We will find the bigger picture out this week, it will help to determine what course of action follows.
Will update soon,
Love Beth
Check out http://www.projectsarah.com
Monday, March 12, 2001 at 08:15 AM (CST)
Clinic last Thursday certainly was not uneventful. When we arrived in clinic, Austin seemed very quiet. A short time went by and his eyes started looking glazy. Feeling sad for him, (not that I need a reason :-) ) I reached over to kiss his forehead, and wouldn't you know it - he was hot. 38.1, not high enough to be admitted - but certainly something was brewing. Not half an hour later, he looked soooo unwell. He was lying on the bed in the clinic and just wanted to sleep. Temp was up to 39.2, so the go ahead was made to head over to the ward. Since a bed wasn't available, we spent a good part of the day in the clinic. Austin slept the whole time. He needed platelets, soon after he received them we headed over to the ward. By this time, he had his cultures done and was able to take some Tylenol. Two hours after the Tylenol, his temperature was up to 40.1. (5pm). By 7:30, it came down and stayed down. Because he is still neutrapenic he needed to stay the 48 hours required to see if the cultures were growing anything, which they didn't. Friday morning he woke up in good spirits and looked so much better.
Friday night he was complaining of a sore hand. When he has cultures done, he needs a peripheral blood draw, done from his hand. He has five bruises on his hands from pokes in the last few weeks. One of them became red and looked like a pimple. The resident checked him, confirmed it was infected and said to keep our eye on it. By bedtime, he couldn't lift his arm. When he woke up Saturday, it felt alot better. This was a wake up call for me, I sometimes forget how serious every little thing can be. A little tiny pimple looking thing and the doctor was talking xrays and surgical consults. I'm glad that it took care of itself, it could have turned into something really ugly. We are putting polysporin on it, seems to have helped.
Overall, he had a good weekend, and we came home last night. He was transfused red blood before we left, so he should be OK for a while. His counts are on the way up, grans. are 0.2, white count 1.1. He responded to the platelets on Thursday and on Friday they were up to 115. Saturday 80's, and yesterday 60's. This is the first positive sign since relapse started. Although he probably will need another transfusion some time this week, this is excellent news that he responded so well and has managed to keep these platelets afloat! He is booked for a bone marrow aspirate / biopsy on Thursday to see what this second round of chemo has done.
So the last 18 of 20 days have been spent at the hospital. It is good to be home -
On another note - Project Sarah has been established by a family of a little girl, Sarah, who passed away last year from neuroblastoma at the age of 3 1/2. You might have read about it in the paper, or seen it on the news. A song was made for her family, "Heaven Must Have Needed You More". The CD has taken a life of it's own, and by popular demand has prompted the family to start "Project Sarah". The CD sells for $10.00 and is available at all branches of the Royal Bank, and local businesses in Grimsby. All proceeds go toward helping families dealing with cancer, as well as The Children's Hospital. It is a beautiful tribute to Sarah's memory, so please support her family by making a donation / buying a CD to honour such a beautiful special little girl!
Clinic tomorrow, bone marrow next Tuesday - will keep you posted :-)
Love to everyone,
Beth
Wednesday, March 07, 2001 at 11:52 AM (CST)
Five hours after our last update, Austin's temp went back up, so we were admitted that night for neutrapenic fever. Cultures were done, put on antibiotics and Wednesday morning his temp. was back to normal.
Thursday night Aaron & Nana had a bout of whatever Amber had on Monday. Friday morning we were slated to go home, but when the docs learnt that there was something going on at home, they wanted us to stay one more day. An hour later, he spiked another temp, so cultures were done again, and we were back to having to wait for the fever to go down, which it did Saturday morning.
Friday afternoon, Erika got a touch of "the bug", Glen got it full blown. Saturday Aunt Sharon did, Sunday - Kelly, Monday - Nancy & Brooke. I guess people are going to think twice before offering to babysit again!
During Austin's hospital stay, he felt really good. His counts have bottomed out, he has had three platelet transfusions, and two red blood. In total since January, this makes twelve transfusions. If you don't already, maybe you could consider bcoming a donor - what a gift you would be giving children like Austin, who need these transfusions to survive :-)
His granulocytes (part of the white count) have been zero for eight days straight. These are the blood cells that make up most of our immune system, without them there is no way to fight off bacteria / viruses.
Today we need your prayers for Austin's bone marrow to recover from this chemo. We are eagerly waiting for any sign that these counts are on their way up.
Clinically, Austin is feeling fine. He looks good and is in very good spirit. We have had a really good week together, it was nice to have the one on one with him (especially since everyone else was here hugging the throne). We were quite comfortable in our little suite - flu free!
We go back to clinic tomorrow - remember - THINK COUNTS!!
Love to everyone,
Beth
Tuesday, February 27, 2001 at 11:15 AM (CST)
Austin's fever went up to 38.8 yesterday afternoon, so we had to go to clinic for a fingerpoke to check on his counts. His neutraphils were high enough that he didn't have to be admitted, so we came home. Through the night the fever went down, and this morning was 37.5.
At clinic this morning, his counts were all above the mark for transfusions. So we were quick in and out, surprising most. We have clinic again on Thursday. If his temp goes back up, or he has signs of bleeding we will have to go back sooner.
Amber is home with the stomach flu. Hopefully she keeps it to herself!
Have a good day,
Love Beth
Saturday, February 24, 2001 at 03:59 PM (CST)
Austin is home, completing his second round of chemotherapy. This hospital stay seemed to go by really fast. Everything went well, Austin felt pretty good through everything. A couple little bouts of nausea, gravol quickly fixed that up. He will continue to take Ondansetron at home to help the nausea, hopefully it does the job. If not, I can always include the gravol in between doses to help out.
We will be back in clinic on Tuesday to check his counts, hopefully all is well until then.
It's good to be home, I'm off to play with Erika ...
Love to everyone,
Beth
Monday, February 26, 2001 at 11:58 a.m.
Well it's almost noon and Austin is still sleeping. He has a temperature of 38.3, so it seems we'll be heading back to the hospital sooner than expected. At 38.5 they will admit him, I will be calling the doctor this afternoon to give him the update. Hopefully when Austin wakes up the temp will go down, if not I'm sure we'll be heading to the hosp. some time today.
He had a good day yesterday. The nausea seems to be under control, and he ate a little bit. He spent most of the day with Nana while I ran Aaron & Amber to birthday parties. Sounds like they had a busy day.
Thank you all for your words of encouragement. As Glen and I sit here, we feel so helpless, it's very different than the first time Austin was sick. We feel as though we have no control, it's in God's hands now. We trust in His will, we just pray for stength to get us through. We ask that you do the same :-)
Will update soon,
Love Beth
Tuesday, February 20, 2001 at 08:04 AM (CST)
Austin will be admitted tonight to start the second round of ICE tomorrow.
He continues to feel well, the cough is a little more active. Platelets came up to 47, still not great.
Will update soon,
Love Beth
Saturday, February 17, 2001 at 10:10 AM (CST)
Here we are still at home. Austin's checkup on Tuesday revealed platelets of 28. Down from 72 last Friday, so no chemo at this point. Ideally they would like platelets to be up around 100. Thursday, platelets were 36. They've climbed a little, so hopefully when he has them checked on Monday they climb up some more.
The risk of starting a chemo with low platelets is the potential of having the bone marrow unable to recover, ie killing the bone marrow. Monday we have to decide whether or not to go ahead and start the chemo regardless of platelet count. Hopefully platelets are high enough that we are not faced to make such a serious decision. At this point the doctors are thinking there is just too much disease in the marrow, thus the low platelets.
Austin continues to feel good. He looks good, and has been busy playing. He has a bit of a cough, otherwise everything has been good. He hasn't been able to go back to school because there has been a couple cases of chicken pox reported in the school.
Erika and Amber have both gotten over their bouts of fever, and both feel good. Today we're off to Aaron's hockey game, they've started the playoffs - although I think Aaron's team has pretty well been knocked out already. It's still fun to watch.
Hope everyone is well and has managed to duck these viruses!!
Take care,
Love Beth
Saturday, February 10, 2001 at 11:20 AM (CST)
It's been a far better week this week. Austin has bounced back and is feeling good. He has been running around the house like he doesn't have a care in the world. So much nicer to see let me tell you!
He had clinic on Monday, his counts were all good except platelets. Hemoglobin was up to 119. Granulocytes came up to 2.4, so the neutrapenia was over. Platelets were still only 8 though, so he went Tuesday morning for a transfusion. He had his bone marrow aspirate / biopsy done. Everything went well, he was the model patient :-) The aspirate shows that the bone marrow is still packed with neuroblastoma, so no change. To put it in perspective, when a child is diagnosed with nb, the docs look under the slide at the bone marrow and have to look for tiny clusters of neuroblastoma. It takes a trained eye to find these clusters as they are scattered about on the slide. Even with just tiny clusters here and there, this presents nasty disease, not always easy to get rid of. When they look at Austin's bone marrow, it is a SOLID sheet of neuroblastoma. The oncologist told me yesterday that he has never seen anything like it. That's the bad news. The good news is that Austin's platelets were 72 yesterday (just three days later), which means he is making platelets on his own. The doctor also told us that this is AMAZING, and given' Austin's state (looks & feels great), he agreed that Austin is truly AMAZING, unbelievable is what I think he said. This is a new oncologist at the hospital, so he obviously doesn't know that we already knew that about Austin. I told him he hadn't had the fortune of meeting this incredible little boy before and to just wait to see what he can do!
He will go back on Tuesday for counts, and depending on platelets (they want them to be at least 100), Austin will be admitted that night to start the second round of chemo on Wednesday. He also has a bone scan / MIBG scan booked for Tuesday. This will determine whether or not the disease has progressed since December.
Since Austin's counts were good, he was able to go to school on Thursday. He had a really good day, I'm so happy that he was able to go. He made it through the day without wiping himself out, came home happy and full of energy. He wasn't able to go on the playground since his platelets were so low. At first he was upset and didn't even want to go to school since he couldn't go outside. Yesterday he asked me if he could stay inside next time too since he had so much fun by himself playing in the sandbox while the other kids were playing outside. We stopped by the school yesterday to pick up a craft he made for Valentine's Day. He will more than likely be in the hosp. on Valentine's Day, so we'll have to make sure his day is extra special.
Erika and Amber are both recovering from some sort of viral thing. They both had high fevers, both are feeling alot better today. Erika started crawling this week, LOOK OUT, here she comes!!
Will update soon,
Love to everyone,
Beth
P.S. Congratulations Tracey & Stefan, and welcome to the family Maxwell! I'm happy for you :-)
Friday, February 02, 2001 at 04:23 PM (CST)
Hello everyone,
It's been a pretty busy few weeks around here, but finally things have wound down a bit.
Austin's first round of chemotherapy really hit him hard. The first few days went well and he seemed to be tolerating everything pretty good. Once he was home, he was really feeling lousy. To sum it up ... he never ate for a week, he was nauseaus constantly, he vomited a few times, he refused to take his medicine because it made him throw up, he was down right tired, grumpy and feeling achy all over. Since his chemo he has required four platelet transfusions and three red blood transfusions. His white count (neutraphils) dropped to 0.00 and stayed there for 12 days. He spiked a temperature on Aaron's birthday (the 20th), and spent the next five days at McMaster. His appetite came back in around that time and has been good since.
His blood counts keep taking nose dives. His platelets went down to 2 on Monday. The lowest he's ever been, luckily no bleeding occured. He had lots of bruises on his legs, and his bottom lip was covered with blood blisters. His last checkup was yesterday, his platelets were 18. Hemoglobin was 112, up from 76.. Surely these counts are a result of the transfusions he had on Monday. He will be checked again on Monday. His neutraphils were up to 0.4, still neutrapenic, but at least it's a start!
Depending on his counts Monday, he is booked to have his bone marrow aspirate / biopsy on Tuesday. This will tell us whether or not the chemo has started to do it's job or not. What we do next depends on these results. He was scheduled to have this done yesterday, but was cancelled due to low counts.
His hair has fallen out, we're now the proud parents of TWO bald babies! Erika and Austin look so cute together, as soon as I get out to get film - I will be taking LOTS of bald pictures. As always, Austin is adorable, with or without hair. It doesn't seem to bother him, he knows it will grow back. He had a lot of fun goofing around pulling it out, freaking his sister out!
The other kids are doing OK. Of coarse as things are settling down, they are getting back to some normalcy in the house. While we were gone for chemo and again for the fever ... they both had a bad case of Mommyitis. They also had the flu, along with their cousin Kelly ... Mommy and Austin came home from the hosp. to three little sickies. Not a good place to be for a kid who hadn't had a white count for a week. But he managed to stay clear and so far, has managed to keep the fevers away :-)
Erika is wonderful. She is such a HAPPY baby. I've been able to keep her with us overnight at the hospital when we've been there. She's also stayed home with Aunt Sharon a couple of nights. When she's with us she is so good, but she keeps me pretty busy. Too busy to give Austin the attention he needs. When she's not with us, I miss her like heck! Too much.
Austin is having a pretty hard time getting back into the swing of being the "model" cancer patient. He is giving the nurses a good workout when it's time for any procedures. He's really really taking care of his new port, he is so protective of it, he won't let anyone near it. So when it needs to be accessed or deaccessed he is NOT very cooperative. He is really having a hard time with the insuflon (the little catheter that goes in his arm for GCSF injections) being inserted and removed. We are working with the child life specialists and talking to him when nothing is happening to try to ease his fears. This will take time and patience, he doesn't understand why this is happening again. WHO DOES????
Thank you for your phone calls, my mother relays your well wishes. Please feel free to call anytime, we welcome the support. We NEVER get tired of knowing that people care and are thinking of us. Austin really could use the boost once in a while too! To carry on like everything is normal just doesn't work, because it's not normal. Austin needs to know that people care and are thinking of him. This is very important. He needs to know that this shouldn't be happening and it's NOT normal, he is a very special little boy :-)
I will update soon, please sign the guestbook so we know you guys are still out there :-)
Love to everyone,
Beth
Saturday, January 13, 2001 at 11:27 PM (CST)
I wish I had better news to update you with, and I apologize for not doing it sooner. Austin has relapsed as many of you already know.
His MIBG and Bone Scans in December revealed uptake on his spine (2nd to 9th vertabrae) and his knees. His bone marrow aspirate done on January 4th revealed bulk disease in the marrow.
On January 9th, Austin had surgery to insert his Port-a-Cath (a central line). Everything went well, and Austin was incredible.
On January 11th, he was admitted to McMaster to begin his first round of chemo, which consists of Ifosfamide, Carboplatinum and Etopiside (This is referred to as the ICE protocol). It is a high dose protocol, and it is designed to knock the socks off those freakin' cancer cells. Our goal is to have him achieve minimal disease (of coarse NED would be fantastic), and ideally have him enrolled into an antibody study.
He has tolerated the chemo well, he finished day two of three days today. The first two days will consist of Ifosfamide and Etoposide, and Day 3 includes Carboplatinum as well. He has had no nausea and he continues to eat, play and be silly. He does look tired and strung out, but this doesn't seem to get our little one down, he is one special little boy :-), and of coarse we are back to all the fun stuff - swish and spit, swish and swallow, allipurunol (sp?), and neupogen to start on Monday (the daily needle to help his counts recover). He will be coming home then.
Look for an update soon,
Love Beth
Wednesday, November 29, 2000 at 10:36 AM (CST)
Hello everyone. Well alot has happened since our last update.
Austin had his routine scans / bone marrow asp/biopsy done in October. A couple
of weeks had gone by, so we all assumed the tests were good. We got a phone call the beginning of November from the doctor informing us that some of the tests have come back abnormal. For one, the bone marrow biopsy had suspicious cells
reported. Another was his ultrasound, the lymph node in his abdomen that we've
been keeping an eye on was measurably larger than in July. This lymph node has
remained the same size since it was first noticed last year. And finally, his MIBG and bone scans both came back with some uptake on the thorasic vertabrae. After
receiving this information, we were almost certain that Austin had relapsed.
The next week, we went back and redid the bone scan and MIBG. This time
showed uptake, but measureably smaller than the one in October. They are still not
sure what we are dealing with. They are not able to do a biopsy because the uptake
is in the vertabrae, it would be to risky. So for now, we wait to see. We are
scheduled for some more scans in December, hopefully we see that this uptake has
disappeared (which is possible).
As for the bone marrow biopsy, our doctor informed us that there were 2 cells in
1,000,000 that were suspicious. After doing special tests to determine whether or
not these cells were neuroblastoma, they concluded that they were "suspicious". So
for now, we are pretty sure that the marrow is clean. His blood counts last week
were all in the normal range, so that is a good sign as well.
We can breathe a sigh of relief over the lymph node as well. After three different
opinions, it was concluded that the node was the same size in October as it was in
July. Apparently there were shadows on the ultrasound that were included in the
measurements. To be sure, we are repeating the ultrasound in December.
In a fairy tale world, we shouldn't have to worry whether or not this monster could
reappear. But neuroblastoma is real, and it is indeed a monster. We are suited up
to face whatever is thrown our way. Although our scare is far from over, it is just
that for now ... so we are using this tool that we've been given to confirm what we
already know, children are a gift that can easily be taken away and we are to savour
every minute we have with them. We are putting our faith in the doctors ( a
somewhat new concept for us ), and "Him" to see us through what challenges may
face us. Of course we are hoping this is just nothing, but nonetheless are bracing
ourselves for what's to come.
On a happier note, the kids are all doing great. Halloween was fun, it was Austin's
first time ever trick or treating (well if you don't count the hallway last year). School
is fun, he is really enjoying it. He has made some new friends, and talks about them
alot more. When we're in town shopping, it is so funny to hear kids calling "Austin"
from across a parking lot, or down a shopping isle. Yesterday Austin went skating
with his class, his first time on skates. He did awesome! Look out Aaron, looks
like we might have another hockey player in the family!!
Aaron continues to love hockey. They won their very first game on Sunday, a big
accomplishment for them. He's plugging along in school, as is Amber. They both
seem to do very well, but need an attitude adjustment when it comes to homework!
Erika just turned six months old yesterday. She is doing wonderful, a very happy
baby. Not crawling yet, but my guess is very soon. She's still sleeping soundly
through the night, in fact hasn't woke up through the night for the past four months.
Makes me wonder if I just don't hear her :-)
It's good to be back online, although I find it difficult to find the time to enjoy it.
Hope everyone is well,
Love Beth
Wednesday, September 13, 2000 at 12:54 PM (CDT)
Hello everybody, just checking in. Hope everyone is doing well, can't wait to get online again.
Since our last update:
Our BIG boy turned 5!!!! Happy Birthday Austin. We had a wonderful time celebrating Austin's birthday. He had loads of fun with his family and friends, thank you to everyone who helped make his day so special!!
We've been pretty busy the last few weeks getting organized for school and everything. Labor Day Weekend was nice. We did the Smithville Fair on Thursday night, Austin was very excited to be able to go to the Demolition Derby this year. They had lots of fun on the rides. We also went to the fundraiser for Help a Child Smile. It was a nice day and it was great to see some families we haven't seen for a while. Before dinner they asked all the cancer kids to come to the front - about 10 kids came up, and each was asked some questions. There were probably a few hundred people there at that time. Austin spoke into the microphone so clearly and confidently, I was so proud of him. He asked his age, and whether he's been to Disney World. He asked him if it was fun and whether or not he'd like to go back. Austin just kept saying yep, yep, yep. It was really cute. Then Mom was asked about Austin, so when I told them he's been off treatment for 11 months the crowd cheered. It was very touching for us and a very proud moment!!
The kids started back to school last Tuesday. Austin got aboard the bus like he's done it a million times before. He says he likes school and it's fun, but he says sometimes when he gets there his eyes start to drip. When he comes home he seems excited and tells me some things they did. He even sang me a song that they learnt yesterday. I wonder if the other parents were so emotional when their kids came home and sang to them??
Amber skipped school the second day to spend it with Grampie and Bonnie. They took her and Kelly to see Lion King. They said it was fabulous, much more than they even imagined.
Last weekend the boys went to Lasermania for Dustin's birthday party. They had a ball. Austin got hit as soon as they started. He told Aaron that it didn't hurt like he said it would, it actually tickled. Austin came in 17/17 place. Oh well, he had fun anyway! The next day we went to the African Lion Safari through Help a Child Smile. It was a good day, the kids spent a couple of hours in the water park. They loved the elephants, and Aaron liked learning about the birds / vultures. It was neat.
Erika grows bigger every day. She started eatin cereal which makes her day a little more interesting. Last week she let out the biggest rip roaring laugh, I had tears coming down laughing back at her. She is so beautiful. She's been sleeping through the night for over a month now, and catnaps through the day. She's a noisy little thing, she sure does make it known that she likes attention! We're all having lots of fun with her.
That's about it for now,
Love to everyone,
Beth
Monday, August 21, 2000 at 06:24 PM (CDT)
Hello from Nana's house again. Still no modem - I really really miss my cyber friends :-(
Everyone is doing good, summer's almost over - time for school. Austin will be starting Kindergarten, he's pretty pumped for it. Glad he's got Aaron & Amber to watch out for him.
We've been pretty low keyed this summer with Erika and all. We've been spending alot of time at home together (which to me is JUST FINE :-) ) We did spend last weekend in Niagara on the Lake, courtesy of Swiss Chalet. It was a nice get away for us. We met Dad & Bonnie and spent the day with them. We took the kids to Port Dahlousie for the 5 cent Merry-go-round and ice cream. We spent one day window shopping and one day in Niagara Falls.
Austin has clinic tomorrow, just routine. Will be asking some questions about the upcoming 1 year anniversary of his bone marrow transplant.
That's about all for now, Erika is with Nana and sounds hungry - gotta go!
Love to everyone,
Beth
P.S. New pictures of the kids are up.
Thursday, July 27, 2000 at 02:36 PM (CDT)
Well hello again. I finally made my way to a computer, as you've all probably figured out, mine has been on the fritz. The modem had a mind of it's own during a lightening storm and decided it was time for this Momma Bear to give this internet thing a rest :-) It probably was a blessing in disguise because I haven't missed it much :-) and it has given my mind a much needed rest away from nb.
Things are going wonderful for the Davis gang. Austin is doing great, you wouldn't even know he's been through anything this last year and a half. He looks terrific, his hair being his most noticeable feature - tight tight curls and lots and lots of them! He has the energy of ten kids, I think his hemoglobin is somewhere around 200 :-) LOL
We just finished up his nine month post transplant scans / bone marrow and everything is still clear, thank God !! The suspicious lymph node near the aorta has shrunk since the last scans - good news. He has completed his treatment of Accutane and now is running on good old TLC !
Aaron and Amber are having fun this summer just hanging out, and little Miss Erika is growing fast. Two months old already, can't believe it. Things are busy, but boy - what a nice kind of busy!!
So I thought a little update was due, there is no plan in the near future of fixing this "modem" problem, so the updates will be far and few for now.
Take care and thanks for checking in!
Love Beth
Wednesday, May 31, 2000 at 08:17 AM (CDT)
IT'S A GIRL !!!!!!!!!!!!!!!
Austin, Amber and Aaron are so excited to announce the birth of their little baby sister, Erika Ann, born on May 28, 2000 at 1:47 pm, weighing 7 lbs, 15 oz. Mommy and Daddy are so blessed with the gift of this beautiful little girl and couldn't be more happy!! Life is good!
Wednesday, May 24, 2000 at 10:15 AM (CDT)
Hi all,
Things are going pretty good again. We got over the fever thing - Austin was of coarse a super trooper even though his fever spiked to 104.9 at one point. He keeps telling me "nothing hurts me". A silly little fever isn't going to get him down. Anyways, I took him to see our family doctor who thought his throat looked a little red, so I took him to the clinic the next day. He was prescribed some antibiotics and that was it. It was when we got home from clinic he spiked his 104.9, which quickly disappeared once I gave him Tylenol. That was the last sign of fever. The next day he woke up with a rash all over his belly and back, which later spread down to his knees, and slightly on his arms / face. The doc said there were two other kids last week that happened to. Our family doc says it sounds like he had roseola (sp?), a viral infection. The rash disappeared on Tuesday, and all is well again :-)
Round 5 of Accutane is going very smooth. He is on Day 6 today and feels good. He's had no nausea yet - knock on wood!
Well the big day will soon be here, we are now in our 39th week of pregnancy. The kids and Nana and I have a contest going, you know - date, weight, length, sex, hair, eyes. Amber has me having a 100 pound baby. I'm glad she changed her answer to 6 lbs 5oz. It will be interesting to see who came closest.
Not much is going on until then, so I will update as soon as I'm able.
Love Beth
Wednesday, May 17, 2000 at 07:25 AM (CDT)
Shout it from the rooftop: Austin has achieved his third NED (No Evidence of Disease). WHEW, that was a close one! As I said, they were finishing up one more test, his bone marrow aspirate that had previously been looked at and declared negative. A second doc later looked and spotted some abnormal cells in the aspirate, so he continued the test using a stain that determines nb cells more accurately. He called yesterday to say both aspirate & biopsy were negative, he even repeated the test twice to be sure. The test they use can determine 1 cell in hundreds of thousands, so I am happy to know that his bone marrow is definetely clean!! This was the first scare, but I'm sure not the last ...
Austin started his fifth round of Accutane yesterday. He also spiked a fever in the middle of the afternoon. It was as high as 103.5, but he looks fine and after Tylenol was running around with the other kids like nothing was the matter. Through the night it stayed constant at 102 or so - even with Tylenol. He is sleeping now, so hopefully when he wakes up, he'll feel better.
That's about it for now,
Welcome home to ALL the Cormiers & hope you have a super weekend together!!!
Love Beth
Thursday, May 18, 2000
Austin's fever is still hanging about, keeps climbing right back up to 103 / 104. We had him checked at the clinic today, nothing really much. They took a swab of his throat, and put him on amoxicillin for 5 days. He's having a nap right now, otherwise he's felt good all day. I stopped the Accutane yesterday, but will start back up tonight or tomorrow.
Have a good night,
Love Beth
Saturday, May 06, 2000 at 09:45 AM (CDT)
Sorry it's been a while for an update, not much going on.
Austin completed his fourth round of Accutane. Everything went pretty good. He got through Easter Sunday feeling pretty good. Easter by the way was very nice, we spent it with Grampie & Bonnie and had a nice weekend away. He did wake up the next morning (Monday at home) and vomited a couple of times, slept until 1:30 in the afternoon and had a very laid back day. Tuesday he woke up and was fine. I stopped giving him anti-nausea drugs on Wednesday and he went the rest of the round (six days) just fine. His lips are pretty crusty, so we've been constantly putting vaseline on them, he's very cooperative about that!
We had clinic yesterday, they sure do feel few and far between. His counts were OK, his white count wasn't great - his granulcytes were 1.1 (normal is 1.5 - 6). This is caused from the antibiotics he is taking. Makes me wonder if the antibiotics are doing much good if it makes the white count so low, wouldn't it make more sense to have a better immune system. Oh well, it must be working, Austin hasn't suffered from a sniffle through all of this!
We discussed Austin's test results. Everything from radiology came back good, the lymph node that they've been keeping their eye on is still enlarged, but hasn't changed. The bone marrow biopsy came back negative, and the aspirate sample they took still needs one more test done - which will take about a week longer to get results. I will let you know as soon as we hear, please say extra prayers for Austin this week so that everything will be OK.
Aaron is celebrating his First Communion tomorrow. We're all excited for him. Will send another update soon, until then take care!
Love Beth
Thursday, April 20, 2000 at 07:37 AM (CDT)
Hello everyone,
Thanks to everyone who still checks in once in a while, although things are quiet it still means alot to know you're out there!
Austin just completed his tests yesterday, hooray for that. It is tiring to say the least for both of us. Everything went well, he is one incredible little boy. This time around he needed IV's started, or injections via "pokes" now that he doesn't have his "tubes" anymore. He was so unbelievable, didn't twitch through any, (5 pokes in all).
His CT Scan on Fri. went well with Daddy by his side. No word yet on results.
Bone Scan on Monday went well. Everything looks good as far as the tech. could see, just have to wait for radiologist to confirm.
Ultrasound looked good, no change in the size of that darn lymph node, if anything she said it looked more calcified. This is good news.
Echocardiogram went well, no word on results, but I'm sure it's good.
Bone marrow aspirate / biopsy, what normally takes 5 minutes to do took 1/2 hour. A "pediatric resident" couldn't get a bone sample after trying 20 minutes, so finally called in the doc. Six HOLES later in Austin's back, they were done. (Usually he has poke marks, this time he had holes). He's a little bruised and says it's sore when it gets pressed on. The resident called that afternoon with the good news that the aspirates were clear !!!! It takes 3 days for the bone biopsy results, we will have them next week.
MIBG Scan - Looked good, will wait for confirmation from the radiologist.
So that leaves us with somewhat of a good feeling about all of these tests. We just have to wait for final word sometime next week, possibly two.
Austin started his 4th round of Accutane yesterday. Let's all say a prayer for a smooth go of it! If history repeats itself, Austin should be vomiting Easter morning away. I will be giving him Zofran BEFORE he gets to that point, so hopefully he sails through the worst part.
Hope everyone has a great Easter,
Love Beth
Thursday, April 13, 2000 at 02:40 PM (CDT)
Good afternoon everybody!
Well, wishes really do come true. As you all know, we have been anticipating a trip to Disney for quite a while. Although excited about getting away to Florida, the thought of ALL of us getting away together was what we wished for. For a while, we didn't know if that was going to ever happen.
It's come and gone ... and all but a memory now ... the Davis family has done Disney! We had a great time, and were in awe of Give Kids the World, the village where we stayed. This place is incredible. It was started by ONE man who had a dream ... to give every child with a life threatening illness a chance to experience the magic of Disney. Since his dream began in 1989, Give Kids the World has hosted 40,000 families - all possible because of corporate sponsors, donations and volunteers. It was incredible!
To summarize the week in one page, here we go:
Apr. 4 - Help a Child Smile arranged to have a limousine pick us up and take us to the airport. Our flight left at 12:00 and arrived in Orlando at 3:10. A volunteer from GKTW (Give Kids the World) met us there. A courtesy car (a 2000 Windstar Minivan - very nice) was also waiting. Drove to GKTW. Checked in, had dinner, went to orientation and called it a night.
Apr. 5 Did Magic Kingdom. Highlights: Snow White's Scary Adventures, Legend of the Lion King, Peter Pan's Flight, It's a Small World, The Adventures of Winnie the Pooh, Fantasyland Character Festival (MET Pooh), Indy Speedway, and the Jungle Cruise. Of coarse lots of walking, little attractions, etc .....
Apr. 6 Pictures with Mickey & Minnie at the Castle of Miracles, GKTW; breakfast with Pluto & Goofy. Spent the day at Animal Kingdom. Highlights: It's Tough to be a Bug, Safari Village Trails, Countdown to Extinction, Dinosaur Jubilee. LOTS of walking - things were pretty spaced out. Mini-golf at Pirates Island Adventure Golf (courtesy of GKTW).
Apr 7 Universal Studios. Pretty cool. Highlights: Earthquake, Kongfrontation, Woody Woodpecker Roller Coaster, Curious George water park, Fievel's Playland, World of Hanna-Barbera, Nickelodeon, The Wild Wild Wild West Stunt Show, and dinner at the Hard Rock Cafe, Orlando.
Apr 8 Drove to Ft. Pierce (about 2 hrs) to meet Michelle, Christa and Michael Anthony, who live in Florida. I met Michelle on the internet; her 4 year old daughter also had neuroblastoma and was diagnosed a week before Austin. We have went through treatment together in cyberspace, and have dreampt of the day Christa and Austin could meet cancer free. Dreams really do come true!!!! We spent a couple of hours on the beach, got caught in a storm and headed back to Orlando. Of coarse Glen took the LONG way back taking in the sights. It was a great day! Will post pictures of Austin & Christa as soon as I get them!! When anyone asks Austin if he got to meet Christa, he tells them how "cute" she is ... and she's "four" just like him. I don't think he realizes how much more in common they have. Thanks for meeting us guys! (The tape turned out perfect - all ten minutes of it!)
Apr. 9 Did Magic Kingdom again. Highlights: Met Cinderella & the Prince, Pirates of the Caribbean, met Captain Hook (who kissed Amber on the hand :-) )Cinderella's Golden Carrousel, Dumbo the Flying Elephant and watched the Magical Moments Disney Parade (MY FAVORITE!!). Aaron & Amber danced with Cinderella & the prince, and Aaron danced with ??? (I forget). Finished up what we missed the first day and headed over to Epcot. Did Innovations, Spaceship Earth ride, Test Track and watched IllumiNations 2000: Relections of Earth (fireworks). Enjoyed food from Mexico too!
Apr. 10 Did SeaWorld. Highlights: Shamu Adventure Show, Clyde & Seamore Take Pirate Island (Glen was picked to be a volunteer to help find the treasure map. It was very cool.), water ski show, Jetcopter adventure to see Wild Arctic, Terrors of the Deep, Tropical Reef.
Came home to have the kids tucked in by the Mayor, who by the way happens to be a 6 foot rabbit. It was easily one of the biggest and best events we experienced. The kids counted the sleeps until the Mayor did his "tuck-in". VERY COOL!!!
Apr. 11 Spent the morning at GKTW. Lots to do there as well. Checked out and went to Gatorland. Aaron and Austin LOVED it, Amber couldn't have cared less. The boys got to sit on an alligator, see lots and lots of crocs, birds, snakes, etc. The boys gave it a 10, Amber never gave it a second thought :-)
Drove back to the airport, left Orlando at 5:10 and arrived back to a snow covered Toronto at 8:00 p.m. Our limousine picked us back up and we headed to the first Tim Hortins (Florida has the weather, but boy ... their coffee sucks!).
There's so much more to tell, but I guess you get the picture. We are so thankful to be able to have done this for the kids. Without Help a Child Smile and Give Kids the World, there is no way we could have.
Apr. 13 Life gets back to normal. Glen's back to work, kids back to school, and tomorrow we start Austin's evaluation. CT Scan and skeletal survey (Glen will be helping again - the baby and I will wait outside). Next week he has scans / tests Mon - Thurs. REALITY check eh? Oh well, it was fun while it lasted ... we made unforgettable memories!!
If you're still with me, hope everything is well with all of you, and will update again with Austin's scans/tests, etc. Also, check out the pics of our trip, I will try to change them often!
Happy (Belated) Birthdays to:
Dror, Michelle, Sharon, Paul & Mark
Take care,
Love to everyone,
Beth
Tuesday, April 4th,, 2000 at 08:24 AM (CDT)
OK, Do you believe it???
AUSTIN IS SIX MONTHS post transplant today!!!!! Half a year - can't believe it!
I think we should go celebrate .........
Thursday, March 23, 2000 at 08:26 PM (CST)
Mon./Tues March 27/28th
Everything is AOK!! The Zofran is working great.
Sun. March 26th
So far so good, gave him the Zofran at 9am & 6pm. Took his pills good this morning. He wasn't too sure about the first one, but managed to swallow it down. Once he figured out he wasn't going to get sick, he swallowed the second one no problem. He looks a whole lot better than he did yesterday. He's been eating great through all of this - I don't know how he does it!
His pm pills went down great!
Sat. March 25th
Yep, the Accutane rules again. Vomited 3x this morning. Was too nauseaus to swallow his pills. Held first one (a.m.) in his mouth 45 minutes, then had to spit it out. Didn't bother with the other one. Same thing in the p.m., held the pill in his mouth forever just to spit the darn thing out. Shoot! Called the doc in the a.m. and got him to prescribe some Ondansetron (Zofran), the anti nausea drug Austin used during his chemo. Gave it to him at 7pm, he was zonked at 7:15 and slept through till 8:30 a.m.
Fri. March 24th
Clinic, counts are good; Hemoglobin 139 (Normal) , Platelets 161 (Low normal), White count (grans.) 1.5 (Below normal)
His ferritin level went from 1000 (Feb) to 700 (March). This is the iron level. Normal is somewhere around 10. Everything else is good, still taking pills well. Eyes are getting glossy, and cheeks pale. Has the "Accutane yuckies" look about him.
Thurs. March 23rd
Everything is AOK.
Tuesday, March 21, 2000 at 10:48PM (CST)
Accutane - Round 3, Day 1
Austin & I spent the morning making a new calendar. Since Mario 64 (Nintendo) has been the latest craze at the Davis house, we made our calendar with that in mind. Each day has a coin colored on it, Austin needs 5 stickers to get a coin. He then needs 7 coins to get a big yellow star, which he can trade in for a treat. Hope it works!
Austin was up to his tricks this morning telling me that he forgot how to take his pills and that he would have to hold them in his mouth for a long-g-g-g time. He's getting pretty good, because I had no idea he was joking. He took all 5 pills today with NO problems whatsoever. HURRAY AUSTIN!!
Hope it keeps up :-)
Good Night,
Love Beth
Saturday, March 18, 2000 at 03:32 PM (CST)
Hi everybody,
Things remain pretty quiet at the Davis house. Can't believe March break is just about over. The kids haven't done much, but they have enjoyed their "break" from school. Austin has been loving every minute of them being home, they have been playing together great!
Austin continues to do well, he looks great. His hair is coming in more each day, he actually has waves at the back now and swirls on top. It seems to be coming back just the way it was before :-)
He starts his Accutane (Round 3) again on Tuesday (can't believe he's already been off two weeks).
Thanks for checking in on us and caring!
Love Beth
Friday, March 10, 2000 at 04:16 PM (CST)
Austin had his hearing assessment done at Chedoke this afternoon. There has been no change since January. He is in the range of moderate high frequency hearing loss - not enough to warrant a hearing aid. He will be checked again in July to discuss some options. We will continue to pursue the speech therapy and who knows maybe it's ALL developmental, after all - Austin has had one heck of a year, not a typical 3 - 4 year old life. I've noticed in the last few weeks since I've been paying big attention to the words he is not pronouncing correctly that he does get the sounds out after trying it a few times.
The audiologist suggested that a FM system might suit Austin well in school. This would be the teacher wearing a microphone and Austin having the speaker to his ear, or depending on the school board - a speaker on his desk, so that he is able to hear everything she is saying. Because it would be the background noise bothering him a hearing aid would only exaggerate that problem, so he wouldn't be able to hear the teacher anyway. We'll discuss this more in July.
That's about it for now, have a good weekend,
Love Beth
Thursday, March 09, 2000 at 08:36 AM (CST)
Hi everybody,
Austin is bouncing back from his 2nd round of Accutane. After only 2 days, his red cheeks are disappearing and so are the cracks on his lips. This morning I mentioned something about his pills, and he asked "What pills?"
Clinic yesterday was a full day. His counts are looking pretty good, hemoglobin 140, platelets 169, and white count 4.0 (still below normal). He had blood work done again, which we'll find out about next clinic visit (two weeks). This poke didn't go as well as the first, he was pretty freaked out.
He met with the child life worker and played a bit. They drew pictures of all the yucky stuff at the hospital. His first yucky thing was "the food". He also included medicine, a person lying in a hosp. bed, and a few other things. They disappeared into one of the checkup rooms, taped the paper onto the back of the door and squirted all the yuckies away with a syringe of water. It sounded like fun!
He also met with a speech therapist for the second time. His general assessment is this: Austin's speech for the most part is age appropriate but there are sounds he is leaving out that could be from his hearing loss. From his observations, along with his conversation with the Audiology Dept., they have referred Austin to Chedoke for a hearing assessment. It sounds like a hearing aid is in Austin's near future. He is also referring us for speech therapy, from what I understand somewhere in St. Catharines. I will tell more when I know more!
Hope everyone is well, thanks for checking in!
Love Beth
Tuesday, March 07, 2000 at 07:32 AM (CST)
It's been a while, Sandy pretty much summed it up ... boring, boring, boring. I guess that's OK though!!
Austin just finished his 2nd round of Accutane. The first week was awful. Lots of vomiting, crying and time commited to getting him to take these pills. On an average it was taking 3 1/2 - 4 hours a day to get him to swallow them. That's start to finish, starting with chasing him around the house like a cat and mouse game, finally catching him, talking him into taking them and finally watching him as he holds each one in his mouth for 1/2 hr. - 45 min. - and one very impatient mommy!
Well that all changed on Wednesday. After a few conversations & bits of advice here's what's been happening. Instead of giving the Accutane right after breakfast and supper (on a full stomach), I'm waiting a little while before giving it to him - thinking if he starts to gag on the pill, at least his stomach isn't full to the brim. Instead of putting the pill on a spoon with heaping pudding, I've changed to using the tip of the spoon with pudding. I think when he was holding the pudding / pill in his mouth for SO long, he was also building up saliva, which made it very difficult to swallow when he was finally ready. We started a sticker page, and that has been going good. Today or tomorrow I'll take him to pick out a treat for getting ALL his stickers! And one last thing, on Thursday I decided not to take anymore of his guff, I'm the boss :-) (this might take a little while to fine tune).
All of this put together, (with the help of antinausea pills), and there has been no vomiting, no chasing around in circles, no yelling and best of all - last night, his last dose, he swallowed all 3 pills in less than ONE MINUTE!!!! Way to go Austin! He's afraid he's going to forget how to next time. I HOPE NOT.
So that pretty well sums up our two weeks, it's taken up a good portion of each day.
Aaron and Amber are looking forward to March break. Austin is officially registered for Kindergarten in the fall, so we've been excited about that.
We're thinking alot about Disney, I told the kids that it was 90 degrees there, and Amber shouted out in a monster voice "I have to be there" (guess you had to be there). Austin is concerned that there won't be toilets in Florida, and if there is, who's going to show us where they are? lol
Well, hopefully the next update isn't so far away. I've been giving myself some time to heal after everything our family has been through. It's been hard, but I'm getting there :-)
Enjoy the beautiful weather!!
God Bless,
Beth
Wednesday, February 16, 2000 at 01:10 PM (CST)
Clinic was very uneventful yesterday. Austin's counts are good, the white count came up a bit probably due to the fact he is not taking Accutane this week. His hemoglobin & platelets remain the same as before.
His blood work done last week came back normal. Everything but his Ferritin level which has continued to be elevated. This measures the iron in your body. It also is used for a marker at diagnosis to determine the aggressiveness of the disease. I was in a little panic the more I thought about it as the day went on, but two doctors from the n-blast support group eased my mind and responded to my post about Ferritin. They both explained that children who have received many blood transfusions (especially kids that have gone through transplant) will have a higher iron level than normal, which would be reflected in a higher ferritin. This can continue for months after transplant. A high ferritin all by itself is usually nothing to worry about.
Austin had a good time at the clinic today. A man who volunteers his time (and train set) comes into the hospital to play with the kids. After ten minutes of persuading Austin to go see "Papa", he accepted the invitation only if Mommy sat right beside him. "Papa" was very friendly joking with Austin, asking him all sorts of questions. Austin responded by whispering in Mommy's ear so that she could answer his questions. About ten minutes of that, Mommy snuck away (not too far) and watched as Austin warmed up to "Papa" and had a great time talking and playing with him. "Papa" asked Austin if he was from Hamilton? Burlington? Kitchener? etc. etc., and each time Austin INSISTED that "NO, he lives in Canada!" It was VERY cute.
This morning Austin & I were in the middle of having a race on Nintendo, when he paused the game. I asked him where he was going, and he told me "to go comb my hair!" Yes, his hair is growing in so fast, he even had "hat head" yesterday when he came in from outside!!
Hope everyone is having a great day!!
Love Beth
Monday, February 14, 2000 at 08:44 AM (CST)
Happy Valentine's Day everybody!
Looks like a snow day for Hamilton? The kids were hoping for one here, but no such luck, the bus came AS USUAL! It hasn't stopped snowing though, I hope it lets up soon so they can get home safely!
They were excited about their Valentine's parties this afternoon. Amber is sure that everybody "LOVES HER" and gets very excited when she gets a "love note".
Austin is feeling much much better this week. He has another week to get strong before his next round of Accutane, hopefully his body has adjusted and that first round was not an indication of what the next six months will be like !! He has clinic tomorrow, I'm curious as to what his counts will be. Will keep you posted,
Love Beth
Monday, February 07, 2000 at 04:22 PM (CST)
Things are going a little better. Austin has tolerated full doses again, maybe with the help of Gravol.
Clinic was OK. Austin's counts were all over the place. His hemoglobin is 140, I didn't even know it went that high :-), Platelets went down, and white count went down. He'll get checked again in a week, so we'll see what it's like without Accutane.
The doc took note of Austin's last two weeks and we'll just watch and see what happens as he comes off the Accutane.
Austin had his first "tubeless" blood draw. (Well, other than peripheral blood draws while he was neutropenic / fever - 3 or 4 times - maybe). He was a very brave boy, and with a bit of precoaching from Mom, he willingly gave the girl his arm, and not a peep. After she was done, some crocodile tears rolled down his cheeks. When I asked him what was the matter, it was over - he thought the needle was still inserted into his arm, under the cotton ball that she had placed when she was done. I had to remove the cotton & the tape and show him that there was nothing there, and he was fine. HE GETS A GOLD STAR!!!!!!!!!!
I will get the results next week when we go back to clinic. I also dropped off a 24 hour urine collection, so hopefully will get the results from that as well.
While in the clinic, I learnt that Sarah left to be one of God's angels yesterday. Again, I'll ask that you say a prayer for her & her family. She was 3 years old.
God Bless you & your families,
Love Beth
Sunday, February 06, 2000 at 08:48 AM (CST)
Two more days of Accutane and we can take a rest for two weeks. Austin's feeling okay, I wouldn't say great though.
After Thursday's vomiting episode & nap he woke up feeling a bit better. Friday morning he vomited again, so I lowered his dose to 80mg for that day and snuck some Gravol into his antibiotics since he refuses to take it. When he saw a little more than usual in his syringes he was not pleased, so I told him I wouldn't do it again.
The other day he saw a commercial for chewable vitamins and said he wanted to have those, just like Aaron & Amber have. So Saturday morning I ran to buy some chewable Gravol tablets. Came home & he was more than excited to take them. Gave him a full dose of Accutane yesterday, and no vomiting. So far so good this morning, he will be taking the Accutane soon. I'm crossing my fingers that the solution is as simple as Gravol!!
Christopher is here for a visit / sleepover, so the kids are having fun with someone "new" to play with. Their social life has really sucked the last few months, something I can't wait for them to get back!
Nothing much happening today, other than a hockey practice for Aaron. Clinic tomorrow, I will let you know what the doc has to say about the last two weeks (and to let you know how the bloodwork goes, aka "the poke".
Have a good day,
Love Beth
Thursday, February 03, 2000 at 08:46 AM (CST)
Glad to report Austin is doing much better. We didn't go to the clinic on Tuesday because when he woke up he looked back to his normal little self. On Sunday pm and Monday both doses, he was too nauseaus to swallow the pills, so we took Dror & Christa's approach and he spit the capsules out once he bit on them. Unfortunately, he also spit most of the medicine out, probably the reason he felt much better Tuesday morning.
So I'm back to asking him to swallow the pills whole. He's been doing good again. Mommy has learnt to be alot more patient, and spends roughly an hour twice a day sitting with him keeping his mind off the pill in his mouth, until finally he swallows it. It has worked out well, we have spent the hour practicing ABC's, singing songs, counting, etc. By the time he's done this Accutane thing, he should be very ready for Kindergarten in the fall!!
After two days of FULL doses, he is feeling fine. His lips are starting to dry out, but we've made a "pokemon potion" to put on them & his cheeks.
Great news about Disney. Our trip is "booked". Will let you know more later.
That's about it for now, Austin has clinic on Monday for bloodwork. Please say a special prayer for Sarah & her family to give them the strength they need to endure what is happening to their precious little baby. Sarah is such a special little three year old girl who is battling neuroblastoma. My heart is breaking for her.
Until next time,
Love Beth
Afternoon update: Should have knocked on wood, Austin threw up yesterday's lunch and everything he's probably eaten since then :-( He's been sleeping for the past hour, I hope when he wakes up he feels better. He wasn't complaining of a sore tummy this morning at all, this just happened out of the blue.
Monday, January 31, 2000 at 02:18 PM (CST)
Well Accutane and Austin aren't proving to make a good combination.
In the words of our little peanut "He's not feeling so good this day" He has been nauseated since I last updated. Yesterday morning he woke up to a three hour vomit session, then wisely took a two hour nap and felt better when he woke up. Felt good enough to go outside and play for two hours, I thought he had snapped out of feeling lousy. Instead, he came in from playing and fell back asleep for two more hours.
If that's not bad enough, it's been a battle to even get him to take the Accutane. Last night was a 45 minute episode of trying every trick in the book. This morning, it was just plain & simple, he refused to take it. I chased him around like a cat and mouse game, until finally I talked him into it (after finding him from his secret hiding spot). The second he took the pill in his mouth (after much persuading) he vomited. I persisted, and he finally got about half the dose in.
He fell asleep at noon and until a few minutes ago was fast asleep. In that time, I started wondering if he's becoming anemic. It's hard to tell since his cheeks are red from the medicine. I called the clinic, and have made an app't to see the doc tomorrow morning. I'll feel better knowing what his counts are, and maybe we'll find a solution to this "bad start" on Accutane.
I started making arrangements for Disney this morning, we were thinking about early April. As you can imagine, I'm quite excited about going; and the kids can't wait either. Amber's news to her class last week was that she was going to Disney in March. She was a little disappointed that I told her it won't be until April. Well, wait until she finds out that we might not be going at all. The travel agent informed me that women in or after their 7th month of pregnancy can't fly. I am so disappointed. He is trying to see if he can find an airline that will fly pregos in their 8th month. I'll keep you posted.
Austin woke up from his nap VERY talkative, and seems to be feeling ALOT better. Hopefully he has a better end to his day!!
Love to everyone,
Beth
Saturday, January 29, 2000 at 11:49 AM (CST)
Hi there. Now, where do I start? I guess from where I left off last ...
Last weekend was pretty busy. On Saturday I took Aaron & Amber to a play "A Very Hungry Caterpillar" & "A Very Quiet Cricket" in Brantford. The tickets came from Help a Child Smile. It would have been great for Austin but I chickened out of having him in a crowd of kids. (Maybe next time!)
Sunday, Aaron had his birthday party. We took four of his friends to see Stuart Little. They all liked it. I'm not sure what I thought about it ... put it this way, half way through I fell asleep! Aaron continued his party at McDonalds. He had a great day!
Monday we spent the morning at the clinic. Austin's prescription for Accutane has been filled and he started taking it on Tuesday.
Accutane is 13-cis-retonoic acid. This is a chemical that can be made in very small amounts in the body "from" vitamin A, and has been proven to be effective against neuroblastoma tumors. Accutane has been proven to significantly improve disease-free survival for high-risk neuroblasoma patients who have undergone a bone marrow transplant, followed up with high doses of retinoic acid. Glen and I are thankful that Austin is able to take part in this therapy, as it is fairly new and a matter of good timing.
Accutane is usually used for clearing up Acne. The dose Austin is taking is comparable to the maximum dose an adult could withstand. There are side effects, the most common is dry skin, dry mouth, swollen and sore lips. Occasionally, nausea and vomiting, muscle pains, tiredness, headaches, high levels of fat in the blood, and high levels of liver enzymes in the blood. There are many rare side effects as well, but let's hope Austin doesn't encounter them.
The other thing I should mention is that Accutane comes in a gelcap tablet. Austin has to swallow these pills whole. He has 2 in the morning, and 3 at night. (He is taking 110mg/day). He started off swallowing them great, but is having a hard time trying to get them down the last few times. Poor kid, sometimes it takes him a good 1/2 hr before he finally swallows them. He knows not to open his mouth, because this drug is light sensitive ... so he keeps sipping his drink until it finally goes down. Any suggestions???
As for side effects, yesterday he vomited. Nana was here for the rescue. He looked terrible when I got home, but after a two hour nap, looked alot better. He looks fine today, although his cheeks are starting to look a bit red, and the corner of his lip has started to become irritated.
He takes the pill for two weeks, then has a two week rest period. He continues to do this for 6 months. If he tolerates it well, I will ask to have him continue for another 3 months. I think that about covers it!
His counts on Monday were great, his hemoglobin went up nicely after taking him off Dapsone. In four days it went from 106 to 120! (Normal is 105-140) His platelets were 166 (Normal is 150-450), and his white count was 3.8 (Normal is 5-5 - 15.5).
We will be back in clinic in two weeks to do blood work to make sure the Accutane is not affecting his liver. This means a poke for Austin now that he doesn't have his tubes anymore :-(
Austin had lots of fun tricking the VON nurse that comes in. He had his arm all wrapped up and I prepared everything she needed for a dressing change / flush. She didn't suspect ... so she was happily surprised when he took away his cling!! So that brings us to the end of needing a home nurse visit ... we will definitely miss them, they have been an important part of our life for the last 14 months.
That's about it for now. So far, a quiet weekend. Aaron had hockey this morning in Pelham, they lost 3-1, but they played great!! Of course, tomorrow is a busy day for the guys ... I'm so into football, I don't even know who's playing!
Have a great weekend,
Love Beth
Friday, January 21, 2000 at 08:40 PM (CST)
Well it's been a really busy week, I'll try to get caught up ... sorry, it might be a bit long!!
The week didn't start out so nice. I got a call letting me know that Keefer, a three year old boy that has been battling Leukemia since he's been an infant passed away on Sunday. Keefer was treated at McMaster, and recently underwent a bone marrow transplant in Toronto, the same time Austin was there for his. They just found out two weeks ago that he had relapsed. When we talk about childhood cancer survivors, in my mind Keefer was a true survivor. He spent his whole (short) life here on earth battling this disease but still managed to put a smile ear to ear on everybody that crossed his path. He was so full of life and never wasted a second of it. I have been admiring him since the day I saw him, actually I "heard" him in the hallway shouting HI to everyone he saw. I was amazed at his cheerful disposition and hoped one day Austin could come out from under his blanket and smile like that once more. It was when Austin was first diagnosed I took note of this little person who just made a room shine when he walked into it. Austin has always called him "Keeper" and he will always be just that! I will miss him and his smile and pray for him and the family he left behind. This disease is just not fair.
Wednesday, Austin had his 3 month follow up appt in Toronto. He had some blood work done, the doc was very pleased with the results. Everything including electrolytes, kidneys, liver, etc. looked normal. He was a little concerned about his hemoglobin being on the low side (106) and thought maybe the Dapsone Austin has been taking might be contributing, so he changed the prescription to Septra. He will be on this antibiotic until he reaches one year post transplant.
Austin had his little checkup, and the doc informed us that we no longer need to be under their care and was putting us back into McMaster's full care. This was good news as it indicates he doesn't foresee any upcoming complications due to the bone marrow transplant.
I had some (not all) of my questions answered. Here is a summary:
In the event of a relapse:
- Toronto never has and will not do a second transplant.
- Hasn't heard of any new treatments (in particular, vaccines) that are being studied in Canada.
- Due to budget factors, will not do a second harvest.
- The back up stem cells that were collected last March will be stored for five years before they are disposed of.
- Saving the cord blood of Austin's newest sibling wouldn't be of any benefit to him. Toronto stopped doing donor transplants on nb patients a long time ago.
- He didn't think there was much hope after a relapse occurs.
About isolation:
Can come off isolation, but since there is a huge outbreak of a flu that is knocking the socks off healthy people, it is best to keep Austin "cautiously" away from situations where these germs might be.
Prognosis:
When I asked him about the prognosis we received earlier from the doc in charge of Austins transplant, re: 60% survival rate for those children who have reached a clinical complete remission going into transplant, he thought that he was being very generous. In fact, he told me that he tells all his nb patients undergoing transplant followed by accutane they have a 25% chance of survival. QUITE the difference in opinions!
All in all it was a good meeting, we bumped into some familiar faces while we were there. It's hard to believe three months has past already.
Thursday Austin had a clinic appt in Hamilton. We caught the doc up on what was said in Toronto, and discussed starting the Accutane. Toronto had not sent the protocol yet, so we will be going back on Monday to go over it, and hopefully start on Tuesday. Stay tuned for more info on what Accutane is / the protocol.
We also discussed the prognosis that Dr. Toronto had given. He felt 60% was on the generous side, but disagreed with 25%. We compromised and both agreed that somewhere in the middle sounded good. He told me about a province wide study they did sometime ago, before BMT's were a common part of a protocol, not to mention Accutane. They found that after ten years, half the patients that were studied were still alive. Mind you, these were long term survivors as well as those who were diagnosed shortly before the ten years were up. He mentioned a study McMaster will be conducting on neuroblastoma survivors to begin this summer. They are interested in children who are at least 6 months post transplant, and he will be approaching me when he has more information. We also talked a little bit about what the difference could be in children who survived vs. those who don't. Overall it was an interesting meeting, and I appreciate the time he took to discuss these things with me!
But ... the big part of the day was that Austin had his tubes removed. HIP HIP HOORAY!!!!!!!! He was terribly scared and kept asking for sleepy medicine, poor thing. After all was done though, it wasn't that bad (OK, Austin says it WAS bad), the important thing is that they're out. Soon he'll forget what tubes are. Just today I had to explain where his port was and how we accessed it (something he hated doing).
We didn't tell Daddy or the kids or Nana that he was having his tubes removed, so when we got home it was time to trick everyone. Separately we asked Nana / Daddy to help Mommy flush Austin's tubes by taking off the cling that is wrapped aroung his arms to protect the tubes. Underneath, Austin and I wrote a note that said "SURPRISE". We still have one more trick to pull ... on his home nurse who comes on Tuesday to change his dressing.
January 20th is the special day Austin had his tubes removed, but it is also a very special day already!! Yesterday was Aaron's 8th Birthday. He chose to spend his birthday at a hockey practice, (whatever makes him happy). We came home and had cake and ice cream and opened his presents, and of coarse the kids were all being (EXTRA) silly. Aaron has invited some friends to see Stuart Little on Sunday since he can't have a party at home. He's looking forward to it!
The weekend is looking just as busy, so I'll be sure to update you on Monday once we find out for sure about the Accutane!
Hope everyone has a happy, healthy, safe weekend!!
Love Beth
P.S. Tomorrow's forecast: -26C
IT'S COLD-D-D-D!!!!!!!
Thursday, January 13, 2000 at 11:32 PM (CST)
HAPPY BIRTHDAY TO NANA!!!!!!!!!
How's this for a birthday present Nana? ... All of Austin's scans / tests are negative!!!!!!!! Happy DAY!!!!!!!!!!!!!!!!
Well, we couldn't be more relieved. It helps me to realize that every little complaint Austin dishes out isn't because his body is packed with cancer. It is possible to have a belly ache, or an ache in his leg without it meaning his cancer is back. In no way will I / can I ever let my guard down though ... I will panic everytime he tells me somethings not right, it's just something that goes with the territory of being a mom to a child with cancer.
His clinic checkup was well, his counts are almost all in the normal range.
He also had another hearing test and there has been no change, so that is good news (I suppose). I was hoping that their tests were wrong last month and he doesn't have a hearing problem. He is so on the borderline for hearing certain sounds at a conversation level, I'm not sure what they are planning to do. He has another app't next month.
Nana also got some snow for her birthday ... who ordered that??? The kids were so excited when they woke up (to be a kid!!), Mommy wasn't as thrilled. One good thing about the snow making it's appearance in January, we don't have to wait that long before it disappears!! I predict spring will be here in a few weeks!! (A girl can dream, can't she??)
Have a great day,
Love Beth
Friday, January 07, 2000 at 04:35 PM (CST)
Happy New Year Everybody ... Hope this update finds everybody well. So it's the FLU bug we have to concern ourselves with? So much for the Y2K bug!!
It's been a busy week, here's a quick look:
Dec. 30 ... Mommy had her ultrasound, everything looks good. The pics were great and Mommy got to have a good look, the baby is very photogenic. Even the fourth time around, it's amazing to see a miracle in action! The due date according to the ultrasound is June 3rd. Mommy is now feeling definite movement, and is loving every minute of it!!!
Dec. 31st - Austin is officially "OFF" his low bacteria diet. He was treated to a huge salad for supper and he couldn't have been happier!!
Rang in the New Year with Dave & Louise & the kids banging their pots and pans and hooting and hawlering. It was very exciting, Mommy was trying hard to hold back the tears ...
Jan 1st - As a sign of new beginnings, Mommy & Daddy thought today was as good as any to take the kids out for a night out, along with Gary & Shiela who have been through every dip and curve of our roller coaster ride this last year. We had dinner in Niagara Falls (Austin finally got his "Mario bread"). Daddy treated us to his own roller coaster ride afterwards, finding lots of back roads with twists and turns and "tummy tickler" hills. The kids had a ball.
Jan 6th - Austin had his bone marrow aspirate / biopsy today. His clinic checkup went well, his counts are all good. His white count is up to 4.1, and his platelets have started upward again.
Received word on his CT Scan - PERFECTLY NORMAL - and his 24 hour urine collection - PERFECTLY NORMAL !!! This is a good start.
Had his Bone Marrow done, both sides. Got good aspirate samples, but the doc could only get a biopsy on one side. The results for the aspirate can be determined immediately, the biopsy can take 3-4 days.
The doctor called last night to let us know both slides for the aspirate look clear!! So now we wait to see what the biopsy results show ... probably will know sometime next week.
SO, SO FAR SO GOOD!! He still has a bone scan on Tuesday and his MIBG scan on Thursday. I think it would be easier (on Mom & Dad) if all the tests were grouped together, rather than finding out in bits and pieces.
We will keep you posted as we get results.
Jan 7th - Amber & Aaron had a dentist app't. Amber has an absessed molar in a tooth that was filled a couple of months ago. She's got a blister on her gum about the size of a pea ... she's never complained about it. It's infected, so she's started antibiotics for it. The dentist says she'll continue to have this absessed tooth until she loses it (not until she's 10 yrs. old or so), but unless it starts to cause pain, we'll leave well enough alone. We'll have to keep watch!
So that leaves us to tonight ...
Have a good one!!
Love Beth
Wednesday, December 29, 1999 at 07:58 PM (CST)
Well, we got a major chunk of tests finished today. It was a long day though.
We spent some time in clinic this morning, only to have to leave for the CT Scan without having a checkup. We went downstairs to get the contrast for the scan, came back upstairs hoping to see the doctor, but again, no luck. A little frustrating, although I have no REAL BIG concerns ... I just feel better knowing he's had the once over I guess. His counts confused me a bit, his platelets went from 161 (2 wks ago) to 103 today. The nurse said maybe his hands were cold for his fingerpoke (it's possible), or maybe just a fluctuation because of transplant. The rest of his counts remained the same as two weeks ago. I did bump into the doctor downstairs, and he couldn't really explain the platelets, but asked if he had a cold recently. When I told him he's had sniffles for a couple of weeks now, he thought that might be a possible culprit. No sense worrying (ya, right!), we'll get them checked again next week.
Daddy met us there and stayed with Austin through the scan. Mommy got to wait out in the hallway and felt VERY lost, waiting for them to come out!! They both did a terrific job. Before the scan, Austin had to drink some contrast (very yucky stuff). Mommy brought some cream soda to mix it with, and Austin sucked it back pretty quick. Austin got the title of being their "fastest kid contrast drinker ever". Something to be proud of I guess!
After his CT Scan, Austin & Daddy headed over for a complete skeletal survey. Mommy waited in the hallway again. (A fly on the wall would tell you that Mommy was trying to listen desperately through the door to hear what was happening - what a sad sight she was - can't leave well enough alone!). They both got an A++ from the tech. - and Mommy gets a BIG "F" for thinking they couldn't do it without her!!
From there, he had an echocardiogram. He hadn't had one since January 99 at McMaster. He's supposed to have one every three months, but for whatever reason, hasn't had one since then. (He did have one in Toronto though, but McMaster doesn't have the records to compare with). The doc said everything looked good!!
He also had his hearing test done on the 16th. His hearing has decreased considerably in some areas since transplant. The doctor is going to get some input from her colleagues, but feels Austin does need hearing aids. She says he's borderline, and although I can't notice any changes at home with his hearing or speech, she feels that once he starts school, it would be difficult for him to function in a classroom setting. The tests show that he has a hard time hearing certain sounds; soft sounds like sh, t, s, v, etc. He is going to be checked again in January at McMaster, and possibly be referred to Chedoke for further testing.
That's about it for today, tomorrow it's Mommy's turn to have an ultrasound to see what's brewing inside HER belly!!
Good night,
Love Beth
Sunday, December 26,, 1999 at 10:29 PM (CST)
Hi, Merry Christmas to everyone! Hope everyone is enjoying their holiday so far ... now the big countdown to 2000, how many more hours left?
Christmas at the Davis household was well worth the anticipation. We are enjoying every bit of our holiday. Christmas morning went off without a hitch. The kids woke up at a fairly reasonable time, 7:40 am. I heard Amber in the living room saying "Santa REALLY did come" They scouted the wrapped presents for a minute and dove into their stockings. Too fast for Mommy, I missed getting their pictures. Santa brought them just what they asked for: Aaron, an NHL99 Nintendo game (& an electric guitar), Amber, a doll in a wooden cradle and a Princess Barbie; and Austin, an I Choose You Pikachu and a "Squirtle Buddy Pillow". They gathered up their Santa presents and hopped up on our bed to play Nintendo, so Mommy got an extra half hour to snooze before waking up to do presents. In fact, they seemed so content, I wondered if we REALLY needed all those presents sitting under the tree?? hmmmmmm.
When we got up to start unwrapping the PILE underneath the tree, the kids wanted to know "when are all the people coming". I told them later today. They unwrapped a few presents, stopped and asked again, "when are all the people coming". A little while after they asked "now are the people coming". Goes to show you, they were more excited about having company than they were unwrapping all those presents. They had a great time with their company once they got here. Dinner was nice, and the night was nicer. The kids had a great day ... and Mommy & Daddy did too!!
Today was a big lazy day ... the kids and Daddy played with their toys downstairs, and Mommy played with hers upstairs most of the day. I got a scanner from my Mom & Dad, so I spent the better part of the day playing with that. I haven't figured out how to get the pictures up on the webpage yet, I am working on it though.
We are preparing for Austin's scans & tests in the next couple of weeks. Wednesday he has his CT Scan, and an echocardiogram. His bone marrow aspiration / biopsy has been booked for January 6th. I have been having nightmares the last couple of nights ... I have to keep telling myself to be tough, but boy it's hard.
Glen will be meeting us for the CT Scan so he can hold Austin's hand during the xray. Mommy has to sit these tests out ... the first thing I thought of when I found out I was pregnant. I've been with him for every single test hunched over him holding his hand telling him it will be OK and what a great job he's doing. I guess I'll have to cheer him on from the sidelines!!
A baby note: The baby has made it's presence be known this week as it kicked Mommy to sleep the other night. It's also letting everyone else know by altering Mommy's appearance somewhat!! (and Mommy couldn't be happier!).
Well I hope those who get a real holiday enjoy what's left, and those who have to go back to work tomorrow don't work too hard!!
Happy Holidays,
Love to everyone,
Beth
P.S. Please join me in saying a prayer for the Parker family. They lost their son Kevin this week to nb. Kevin was treated at McMaster, and had relapsed just before Austin was diagnosed last year. He was five years young. My heart goes out to their family, and may peace be with Kevin, he is safe now.
Monday, December 20, 1999 at 07:39 PM (CST)
Glen and I and the kids would like to wish you all the Merriest Christmas and the best for a great Year 2000!! Happy New Year!
HAPPY HOLIDAYS Everyone,
Love Beth, Glen
Aaron, Amber & Austin
(I will start updates again in the New Year, but please sign in and let us know how your Christmas Holidays are!!)
Tuesday, December 14, 1999 at 12:04 PM (CST)
Hi Everyone,
Sorry I didn't update sooner; Austin's temperature ran it's coarse for three days and disappeared on Friday. No trips to the docs / hospital, he took care of it himself! The Davis household is getting back to normal, fewer and fewer sniffles - the four of us managed to have it come and go in a matter of a week or so. Austin escaped with a low grade temp, and a little sniffle here and there. Knock on wood though, Glen seems to be picking something up again :-(
We're all getting into the spirit of Christmas, the house is slowly being decorated, the tree should be done tonight. The kids have their school xmas concert tomorrow night. Mommy might even start doing some Xmas baking (or maybe she won't??).
Thursday Austin will be having his ultrasound and his hearing test.
It's looking pretty miserable outside, it's starting to pour rain, a little bit of freezing rain ... take care on your travels!!
Happy Holidays,
Love Beth
Monday,, December 06, 1999 at 10:33 PM (CST)
Can you believe Austin is already two months post transplant? In a lot of ways it seems like yesterday, but then again, also seems like it was another lifetime!
Clinic went well yesterday, Austin's counts are continuing to rise. His granulocytes (part of his white count) doubled since last Tuesday!! His hemoglobin is now at it's highest count since diagnosis, 119! The docs seem pretty pleased at his recovery, Dr. Barr saw him yesterday for the first time since we've been home.
All the tests / scans have been booked for Austin's 3 month post transplant reevaluation. His ultrasound & hearing test and next clinic visit are on December 16th, his CT Scan & Echo are Dec. 29, Bone Scan & Skeletal Survey on January 11th and MIBG Scan on the 14th. The bone marrow asp/biopsy will be booked for the beginning of January. He will have his 24 hour urine test done as well as his blood work up. These will all be repeated every three months.
His pick line (tubes) removal was discussed in rounds yesterday, and the general consensus was to leave the line in place until his evaluation is done. There are some tests that require injections, his bone marrow asp/biop. requires sleepy medicine and his blood work would require a poke - so we will spare him of these unnecessary pokes and hopefully time the bone marrow test for last so he can have it removed while he is sleeping. (Then we will have a big party to celebrate - NO MORE TUBES!!!)
Not much has happened this week: Aaron's ear infection reappeared, Daddy has been hit with a cold, Mommy's belly is starting to get bigger :-), Mommy started Xmas shopping and we put up some decorations - just waiting for that tree now!! Parent teacher interviews last week went well, the kids are both doing so well. It's amazing how different they are at school .. I was told that Aaron sometimes loses focus on the teacher (not like him at home), and that Amber was a very happy, friendly, serious student (not like her at home ... I told Mrs. M. how comical / silly / talkative Amber was, and she was very surprised). Anyway, they are amazing - with everything that has happened in the last year, I am very proud of them!!
That's about it for now, this week doesn't seem promising for adventure in the Davis household. We'll have to get creative I guess!!
Happy Holidays,
Love Beth
4:30 a.m. update: Austin has woke up with a fever of 102.2 (39). OH BOY, what to do??? Gave him some Tylenol and kept checking him ... of coarse I couldn't sleep - and to boot , guess who's caught Daddy's cold - you guessed it, Mama Bear, UGH!!
9:30 a.m: Temperature is down (37.2). Talked to our Clinic Nurse, she said to keep watch, continue with Tylenol if he needs it and have him checked tomorrow if it persists through the day / night. She said I could even bring him to the family docs to have him check (ears / throat / chest). In other words, unless he's obviously not well ... treat him like any other child with a fever ... that concept seems very odd to me, I was ready to have the suitcases packed at 5 am this morning :-)
10:30 Our visiting home nurse came and happened to bring a doctor who is tagging along for the day ... so I felt much better. Austin woke up and has been running around, obviously feels fine ... so STAY TUNED!!
WEDNESDAY, December 7, 1999 @ 11:30am
Austin looks great, though his temperature stayed pretty steady at 101 all day yesterday. This morning it's down to 100.4, so we'll wait to see what happens later on. Would you believe everyone in our house EXCEPT Austin has caught this virus. I'm crossing my fingers that's all the temperature is about :-)
Tuesday, November 30, 1999 at 01:04 PM (CST)
Austin's counts are in, and well ... see for yourself!!!!
WC 1.9; Normal (5.5 - 15.5)
Hemoglobin 113; Normal (105 - 140) WAHOO
Platelets 137; Normal (150 - 450)
Granulocytes 1.0; Normal (1.5 - 7.0)
Not bad, eh??????
The fingernail issue: Dr. Chan has seen it many times in transplant patients, says not to worry. The nails are falling off and being replaced by new ones.
Today was Dr. Chan's last day in clinic. He will be on call the month of December and then he is leaving for a position at Toronto Sick Kids in January. It was strange saying goodbye to someone who has had so much influence in Austin's care the last year. He will be missed I'm sure!!
Austin and I are off to have lunch, have a great day everyone!!
Love Beth
P.S. Welcome home Keifer!!
Feel better soon Sarah :-)
Saturday, November 27, 1999 at 12:58 PM (CST)
Hi Everybody,
The weeks seem to be flying by so fast. Although this isolation period seems to be dragging on in some ways, it won't be long before it's over.
Austin has been feeling good, he looks great. He will be checked again on Tuesday. I only have one concern, his fingernails seem to be peeling away from his nail beds. It could probably mean a number of things, I'm hoping it's as simple as overdoing the handwashing. He is CONSTANTLY washing his hands, he's almost obsessed with it. He's been using the antibacterial soap that doesn't need water, so I've asked him to stop and go back to good old soap & water for a while to see if that helps. I'll have to keep my eye on the situation ...
We celebrated Daddy's birthday on Tuesday night with a cake we had made for him. No, store bought won't do, Austin wouldn't have been able to have a piece. This low bacteria diet Austin is on sure has made Mommy busy in the kitchen lately!! (Not that she minds - she kind of likes it!!)
Thursday afternoon Austin had a visit from Father Goodwin. He called last week asking if he could come to visit with Austin and bless him with a prayer for his health. He is new to our parish, so I hadn't met him before. His visit was nice, the prayer he blessed Austin with was beautiful. He is going to have the prayer (one of his favorites) made up on prayer cards soon, and will be sure to save us one. When I get it, I will be sure to share it with you. He then got to know Austin a bit over a game of "Don't Break the Ice". Austin was so sweet trying to teach Father Andy all about Pokemon, even though he had never heard of it before. I told him we'd make a deal, he could teach Austin all about God, and Austin could teach him all about Pokemon. We had a chance to talk about Aaron's First Holy Communion in May (he will make Confession as well). It's kind of scary, I clearly remember making mine, it's hard to believe I have a son making his! I must be getting ... no, I won't say it.
Speaking of which, we also celebrated Mommy's birthday last night. It was a good night. After having Mommy's Birthday Rice Crispy Squares (that Austin helped to make), we all loaded into the van to Niagara Falls to check out the Festival of Lights. The kids were so silly when we drove past all the Disney characters lit up ... wait till they see the "real" thing!! Because Austin can't be in crowds, (and it was raining), Glen found a great spot on the sidewalk to park the van so we could have a good view of the Festival of Lights Parade. We had our speech all prepared for whoever was going to tell us to move, it happened nobody bothered us at all. It was great, the kids could see everything and we didn't even have to get out of the van. We were front line and centre for the fireworks over the falls. The kids had a good time ... it was the best present I could have imagined ... we were out together as a family; the concept almost seemed odd!!
Aaron and Amber have been doing so well. This year has been a big year of adjustment for them as well. They both seem to be doing really well in school - we'll see, they get their first report cards next week!!
Well, Thanksgiving and Birthdays are over with ... now the fun begins, Christmas is coming SOON!! Glen and I are starting to talk about Austin's rules / isolation as this season comes near.
Have a great weekend!!
Love to everyone,
OSKY WEE WEE, OSKY WAA WAA!!!!! (sp?)
Monday, November 22, 1999 at 02:49 PM (CST)
HAPPY BIRTHDAY DADDY!!!!
Well we survived our first in-house virus. Aaron woke up Friday morning with a very sore ear and a fever. It looked as though he had a start to an ear infection so started antibiotics that morning. He had a pretty yucky day with fever, stayed in his room isolated from the rest of the house. He started to feel better that night, and woke up Saturday feeling alot better. Must have bounced off Austin, because he's fine!!!! Must be all that garlic bread he's been eating.
Another week gone by, Austin will be 50 days post transplant tomorrow. He's halfway through his isolation period and low bacteria diet. Mommy has been trying very hard to restrict herself from the foods Austin is not allowed, but I confess ... I HAD to have a salad. I've been craving one since we've been home from Toronto. We went to East Side Marios for dinner and all I could think about was that salad; Mark & Sharon came with us - the waiter put the bowl of salad down on the table for all of us to share, I told him go back for more because this bowl is mine!!! and I enjoyed every last bit of it!! Austin thought it was "no fair" that Mommy got to go to Marios, so I promised him that will be the first place we go when he's able. He's craving their bread almost as much as I craved their salad.
His clinic visit today was good. His platelets have come up to 97!! Hemoglobin still holding at 96 (come on red cells!!) and his white count hasn't changed. When I asked about the ultrasound again, I was told that they checked and the spot that they had seen has been on the previous scans too! This is very relieving ... so it's just a calcified spot that they already knew was there!! We can breathe easier.
Hope everyone has a great week!
Love Beth
Wednesday, November 17, 1999 at 07:39 AM (CST)
Hello everyone,
Everything at the Davis household is getting back to normal, Mommy & Austin only need to go out once a week to clinic, and the home nurse is coming just twice a week. That leaves more than half a week to ourselves, which is a wonderful feeling. Austin hasn't complained once about being alone through the day, well other than the times he walks around and says that he's boring. (instead of bored - lol)
Clinic was okay on Monday, his counts didn't change much. WC 2.2, Hb 93, Plt 68 !!!, and Grans 0.9 We discussed the ultrasound a bit, the doc described what they found was a "calcified" lymph node. He will repeat an ultrasound in one month to see if there appears to be any kind of change. I was okay with that, but I'd still like to ask a few more questions; and another opinion might not hurt either!! His 24 hour urine test came back with normal levels (neuroblastoma elevates catecholamine levels which can be detected in the urine) so that was a relief!
That's about it with Austin, like I said things are pretty quiet .. just the way I like them. The updates might be fewer and far between as there's nothing much to report!
Aaron had his first (practise) hockey game on Sunday. He was playing so good, I was so proud of him. He got two assists, he was pretty excited about that (once I explained what an assist was!) He really likes playing hockey. Amber has skating with the school today, they go every two weeks - she seemed pretty excited this morning.
I am picking up their flu shots this afternoon and taking them to the docs after school. I feel soooo bad .. I don't want them to have it, but I guess it's for the best. Glen has changed his mind, and doesn't want one either.
Just a little pregnancy note: the doc heard the baby's heartbeat yesterday. He said it was very clear ... I didn't hear a thing, just a lot of swooshing ... oh well, I'll take his word for it. The due date for now is May 29, the ultrasound will tell us for sure.
Anyways, that's about it for now,
Love to everyone,
Beth
Wednesday, November 17, 1999 at 07:39 AM (CST)
Hello everyone,
Everything at the Davis household is getting back to normal, Mommy & Austin only need to go out once a week to clinic, and the home nurse is coming just twice a week. That leaves more than half a week to ourselves, which is a wonderful feeling. Austin hasn't complained once about being alone through the day, well other than the times he walks around and says that he's boring. (instead of bored - lol)
Clinic was okay on Monday, his counts didn't change much. WC 2.2, Hb 93, Plt 68 !!!, and Grans 0.9 We discussed the ultrasound a bit, the doc described what they found was a "calcified" lymph node. He will repeat an ultrasound in one month to see if there appears to be any kind of change. I was okay with that, but I'd still like to ask a few more questions; and another opinion might not hurt either!! His 24 hour urine test came back with normal levels (neuroblastoma elevates catecholamine levels which can be detected in the urine) so that was a relief!
That's about it with Austin, like I said things are pretty quiet .. just the way I like them. The updates might be fewer and far between as there's nothing much to report!
Aaron had his first (practise) hockey game on Sunday. He was playing so good, I was so proud of him. He got two assists, he was pretty excited about that (once I explained what an assist was!) He really likes playing hockey. Amber has skating with the school today, they go every two weeks - she seemed pretty excited this morning.
I am picking up their flu shots this afternoon and taking them to the docs after school. I feel soooo bad .. I don't want them to have it, but I guess it's for the best. Glen has changed his mind, and doesn't want one either.
Just a little pregnancy note: the doc heard the baby's heartbeat yesterday. He said it was very clear ... I didn't hear a thing, just a lot of swooshing ... oh well, I'll take his word for it. The due date for now is May 29, the ultrasound will tell us for sure.
Anyways, that's about it for now,
Love to everyone,
Beth
Saturday, November 13, 1999 at 03:01 PM (CST)
Friday the 13th some people believe
is a day to bring bad luck,
for me it is a day that will always be
a day in my mind that has stuck.
You see, it was one year ago today my friends
that news had been told to a few,
our child had cancer, how could it be
how did this happen, what could we do?
Crying is all I could do for a while
as I held my baby so close each day,
when all at once he held my face tight
"don't cry" he said "it's okay".
It was that night I wiped my tears
and told myself to be strong,
if I trusted God and believed in myself
I was sure nothing could go wrong.
My baby knew from that day on
that Mommy was there to get through this,
to keep him safe and free from harm
and comfort him with her kiss.
A year has gone by since that day in his bed
alot of heartache, tears and fright,
but with the strength of God and all of our friends
we have come to be alright.
We have a beautiful child, full of life
who's smile is more than infectious,
with each day more we have of him
we know that life is so precious.
He has taught us alot, this child of mine
and spreads light wherever he goes,
his strength, his humor, the power he has
is for sure the reason he was chose.
I treasure each day I have with my son
and pray to God he will let him stay,
for he has much more to do on this earth
and I'm not ready to give him away.
This year has brought more than just tears
it has brought friendships and bonds that will last,
it has shown us love, smiles and fun
and we've come out of it with a blast.
Our little baby you see, has won the round
he's become well again, what's more -
this battle he's fought and the courage it took
has given him what it takes for the war!!
Author: Mommy
November 13, 1999
Be better Austin, today and always.
Mommy and Daddy love you with our heart and souls.
xxxxxxxxxxxxxxxx oooooooooooooooo
Thursday, November 11, 1999 at 01:16 PM (CST)
Well those prenatal vitamins must be kicking in, I've had more energy in the last couple of days than I have for a LONG time. I'm making a dent in the housework, finally. I just have to tackle the playroom, Austin has been bugging for two days to get down there. I know he has a motive, he wants to find out what's buried underneath that mess. I'm just curious to find out if there's a floor under that mess!
One year ago today, Austin was admitted to St. Joseph's Hospital in Hamilton, the beginning of a whole new world for our family. So have I spent my day reflecting?, no ... Austin and I just came back from McMaster where he had an ultrasound done. It is ironic, tomorrow is one year since his ultrasound showed a mass in his abdomen. Well today they were looking for something a little different. In Toronto, Austin had an ultrasound done to look for fungal infections. They didn't find any fungus, but what they did find was a lymph node beside the aorta that looked suspicious. Probably calcified, possibly swollen from the transplant ??? They didn't know, but we all knew that this was something that hadn't ever showed up before. So today's ultrasound at McMaster was to find out what the TO people were talking about, and yes they found a lymph node that looks enlarged. The doctor came in and did the ultrasound a second time to see for himself and he's almost positive it is calcified, and suggested we just keep our eye on it. He will be sending the docs in oncology his report this afternoon. He also was going to look back on previous ultrasounds to see if this is something new. What does all this mean?? Who knows ... if it's calcified I don't see where the problem is. I'll be discussing it with Dr. Chan on Monday, along with the results from his 24 hour urine collection (VMA/HMA results - detects nb in the urine).
We also visited our friend Sarah upstairs who's not feeling so well. She is three years old and has neuroblastoma as well. Their family is from Grimsby, maybe you remember Sarah's picture with Austin and Minnie Mouse when we were presented our Disney trips? Anyways, Sarah needs your prayers to be sure everything will be okay. I will be saying a zillion of them tonight for her and her family.
I'm off to see what Austin's up to - I can't see him and he says he's doing "nothing". That usually means "something"! He is looking better everyday. It's all in his eyes, when I look deep into them .. I still see he's not really right, but each day they get a little brighter! I can't wait for them to shine again.
Thanks for checking in on us, keep those prayers coming ... they're doing wonders!!
Love to everyone,
Beth
Tuesday, November 09, 1999 at 12:48 PM (CST)
Just back from clinic. Boy did I get a nice surprise, I was waiting for them to tell me he needed platelets today:
WC 2.1, Hb 96, Plt. 45, Grans. 0.9
HURRAY FOR AUSTIN!!!!!!!!!!!!!!!!!!!!!
Although these counts are still on the LOW side, these counts today are a very good sign that he has started to recover from the transplant, hopefully it means NO MORE TRANSFUSIONS too! Whew .... I was starting to get a bit worried, but boy was I happy when I saw those counts. He's still got A LONG way to go ... normal hb is 105 - 140, and normal platelets are 150 - 450, and then there's the white count range of 5.5 - 15.5 But he is on his way ... probably the cause of the temperature on the weekend!! (Let's hope).
I was even more surprised / relieved when they told us to come back Monday. We are now down to clinic visits once a week. Yahoo.
All of this is good news, but it doesn't mean that Austin will be 100% anytime soon. He is still immune compromised, and will be for about one year. For the first three months (till January 2000), we are keeping him isolated at home more or less. We have asked that children wait to visit him, and make sure that adults visiting the house are in good health. He will not be able to go into a crowded situation until then, and he is still on his low bacteria diet. He needs to be on antibiotics for one year. Lots of rules & restrictions, I don't know who it's harder on, Austin or me?? I have really been feeling housebound, I think it's time for Mommy to come out of isolation NOW!!
So we're home early this afternoon, Austin has settled to watch a movie, and Mom is going to do some much need housework (UGH - See what I mean??)
God Bless,
Love Beth
Friday, November 05, 1999 at 07:45 PM (CST)
WC 1.4, Hgb 99, Plt 28, Grans 0.5
Platelets are up from yesterday, so no transfusion today. We will get checked again on Tuesday. So we were in and out of clinic pretty fast today, although I ran around the rest of the afternoon trying to get Austin's prescription filled. After a few phone calls, a LONG wait at McMaster Pharmacy, a trip to the Smithville Drug Store, home and back to the Drug Store ... I finally got the penicillin that we were supposed to get! Oh well ...
Aaron and Amber got off the bus at their cousin Kelly's to spend some time with her. Aunt Sharon should be bringing them home soon, it's been a VERY quiet night (probably not for too much longer though). Right now Austin is playing with the toys the nurses in the clinic had given him to bring home, (thanks guys!). He's cleaning my table off with some sort of sponges on a stick that they gave him, he's done with the scissors / tweezers they packed for him, all he needs to do now is hang the IV they gave him. He asked if he could bring home a pole to hang it on. Oh boy ...
When we went into clinic, Austin felt a bit warm. His temperature at 11:00 was 37.6, and has stayed there since. As you all know by now, 38.5 means time to pack up and head to the hospital (McMaster). I would never tell Austin, but it's the last thing I want to be doing this weekend :-(
Glen, Aaron and Amber are all going for their flu shot in the morning. The kids ARE NOT thrilled. Mommy had to have some blood work the other day, and I wasn't too thrilled either. Austin is beaming at us all ... he can't believe in one week his whole family has needed a poke, and I really think behind that smug look he's giving us that he's thinking "so, how do you like it???" Actually he was so sweet when I went the other day, he wanted to come and hold my hand (like I do for him), and I told him he couldn't (you know, isolation thing). So he got really concerned, and asked if I'd call a friend to come with me so they could hold my hand. So sweet!!
The kids just got home, Aaron's already in a mood cause he wants to watch hockey and I told him it was too late, Amber's doing cartwheels for Aunt Sharon and looks like she's on her second (or third??) wind, and Austin has now headed for the bath room with his sponge thing and there are suds from one end of the counter to the other - he's helping me clean :-) Just think, seven more months there's going to be another one! CAN'T WAIT!!!!!!!!!
Have a great weekend,
Love Beth
P.S I promised Debbie from the lab that I would make sure to tell ALL of our friends and family that there really (really) is a need for blood in this area. She had said the other day there were NO platelets in Hamilton AT ALL. Please if you're able, and you've wanted to help somehow and just don't know how ... donate some blood, it really does save lives. Without blood transfusions, Austin would not be here today ... need I say more????
SATURDAY UPDATE:
Austin's temperature went back down to normal last night before he went to bed :-) :-)
Glen and the kids didn't get their flu shot this morning. When they got to Grimsby, there was a sign on the door saying they didn't have the vaccine available for today. We'll have to reschedule for sometime this week.
Thursday, November 04, 1999 at 04:07 PM (CST)
ONE MONTH POST TRANSPLANT
WC 1.4, Hgb 94, Plt 24, Grans 0.3
One month has past already, two more to go and Austin will have alot of restrictions lifted! He has been so understanding, alot of the things he asks for or wants to do ... Mommy has to say "after Christmas Austin". One day last week he finally said to me "Just tell me what I CAN have OK Mom?"
The clinic was so busy this morning, I popped my head in to get his counts and left him out in the reception area. His platelets aren't the best, but not low enough to transfuse (although, even if they were I was told there is a real problem in Hamilton right now with a platelet shortage, and we probably would have had to wait until tomorrow anyway - so come on guys, roll up those sleeves!! We need you). So we will go back tomorrow because the clinic is closed on Monday (rememberance day), they have reserved us a bag of platelets just in case his counts drop, they'll top him up. If it stays at 24, or goes up, we'll leave him for the weekend.
The kids were so excited yesterday to wake up to snow. I don't know what their problem is ... I thought I taught them better than that "No, SNOW BAD!!"
Have a good night,
Love Beth
Tuesday, November 02, 1999 at 01:34 PM (CST)
Hello, is anybody out there????
Austin's clinic visit yesterday went well, he needed a red blood transfusion, his hemoglobin was 69. His platelets are back down to 23, so he'll probably need another transfusion on Thursday. Good sign with his white count, his grans. went up to 0.6 - it's a start!!
Wanted to share a piece of Austin's conversation with you ... it was so cute. We were talking about dinosaurs, and what would happen if there were dinosaurs today. He was imagining a dinosaur coming to our house and eating it all gone, so we would have to go to someone else's house ... etc, etc. The conversation kept on being silly about dinosaurs. Then he imagined what would happen if the dinosaurs ate all the people, and there were no more people at all in the world. So in his cute little voice he says "God sure is going to need alot of crayons right Mom", when I asked him why, he said "so he can make all the people again!"
So for those who missed the news the other day ... I will repeat it ... it went something like this: I'M PREGNANT!!!
Love to everyone,
Beth
Sunday, October 31, 1999 at 09:44 PM (CST)
So have you all had your share of candy bars and sweet tarts?? Happy Halloween!!
Aaron had a sleepover at Christopher's last night, it was a nice change of scenery for him; although we missed him not being home. Amber and Austin took a vote and said he had to come home.
This morning I overheard Amber and Austin playing in Amber's room. Amber was telling Austin it was Halloween today, so he asked her when are all the people coming?? I think he imagined a huge party or something. They were also talking about Austin going to school when he was five and Amber was filling him in on what it was like in senior kindergarten. It was really cute.
Although our little "Pikachou" would have loved to go trick or treating, our little Pokemon had to stay home with Daddy. I took Aaron and Amber over to Dave & Louise's and we trick or treated with them. Aaron was a vampire and Amber was a witch. They looked so cute. The route seems to get shorter every year, or maybe their little legs are just getting longer and a little faster??
Since we couldn't leave Austin feeling left out, (thanks for the GREAT idea Michael!!) when we got home, Austin got dressed in his costume and did a bit of trick or treating himself. Aaron, Amber and I manned our posts in our bedrooms, Daddy took the bathroom .. and Austin had to knock on the doors and shout trick or treat to each of us. When he got his candy at one "house", we sent him to the next "house". He went around the block about five times. It was a lot of fun! He was having a ball, when we were finished, he wanted to go downstairs to trick or treat ... anyway, I finally got the ghouls to bed, sugar high and all. It was a fun day.
And to end my journal tonight, I would like to share a little trick or treat with all of you! TRICK OR TREAT???? Definitely a treat!! Aaron, Amber & Austin will be sharing their next Halloween with their new baby (brother / or / sister)!!! Glen and I are expecting our fourth (YES, FOURTH) baby, and couldn't be happier!! What a blessing this baby will be, and sooooo very loved already!!!
Good Night,
Love to Everybody,
Beth
Saturday, October 30, 1999 at 01:08 PM (CDT)
MON: WC 1.0, Grans 0.6, Hb 79, Plt 26
THUR: WC 0.6, Grans 0.2, Hb 78, Plt 18
After a busy weekend getting back into the swing of being home, the week has flew by ... and here we are again, already Saturday. Let's see, Aaron's back on track for hockey, last week's Saturday practice (my first morning home) was at 7:30a.m. I can't complain though, I'd much rather be sitting in an arena shivering than a hospital anytime!!! He practices twice a week, Sat & Wed's. This morning's wasn't so bad: 8:30am. Wednesday I tagged along on Amber's class trip to the pumpkin patch, and on Friday got to catch a glimpse of their Hallowe'en parties at school.
Monday's clinic went well. Austin's counts had dropped but not by much, so we left him be. We will be going to clinic Mondays and Thursdays for a while, at least until his counts start to recover. Thursday's counts weren't any better, actually - they sucked! He needed a chest xray to determine where his new line (in the arm) was situated. He needed platelets; again, we had to wait almost four hours because there were none in the hosp. for him. We finally got out of there by 6pm. It was a LONG day .. and Austin was so patient. He had to wear his mask pretty much the entire day .. it needs to be changed every 10-15 minutes, I felt so bad. I apologized to him once when I was changing it, and he looked up with his sweet little eyes, and asked me "why are YOU sorry Mommy". He is such a little peanut!!
The home nurse has been coming every day. He needs the dressings changed on his pic line on Tues & Fridays.
Aaron is spending the afternoon at Christopher's, and Amber & Austin have been hanging out the whole day ... I haven't even seen them they're so busy (and quiet)!! So finally I get a chance to sit and RELAX, Yahoo!!!! It's such a beautiful day, I'm going to sit & enjoy the deck before it's covered in snow before long!!
Enjoy your day!!
Love Beth
Thursday, October 28, 1999 at 08:51 PM (CDT)
Sorry I haven't updated all week, I promise to give you all the details tomorrow; it's 10pm, and I'm off to bed, I've been sooooo tired at night I can't stay up past 9 or 10. I'm sure that won't last long.
Thanks for checking in,
Will be back in the morning!!
Love Beth
Sunday, October 24, 1999 at 04:49 PM (CDT)
DAY 20 - AND DOING FANTASTIC!!
Well, all I can say is I can't believe we're home with Toronto being nothing more than a memory. It feels wonderful to be back into the swing of home.
Austin is feeling good, nothing to report. He has made himself feel right back at home; he's eating well, has sat and ate through all of our meals; and is having a great time playing with Aaron and Amber - who by the way have adjusted wonderful to having us home. It doesn't even feel like we've left. They have been so good, I'm so proud of them.
We left Toronto feeling comfortable. Austin's white count had dropped back down to 0.5 (polys) on Friday, still going down, I would have felt a little better if they were on the upswing ... his platelets were topped up before we left. The doc had checked his smear before we left on Friday and reported seeing some red blood and platelets being made. Good news! She figures it won't be long before transfusions are no longer needed.
So the beginning to some kind of end?? I think so ... definetely the world of having a child with cancer is not over by far. Lots of concerns down the road ... he will still be checked frequently (follow up care will be done at McMaster). We will be going to clinic tomorrow; so I'll find out how often we'll need to go. Daily visits from the V.O.N.'s are still needed for quite some time.
He has been put on a low bacteria diet for three / or / six months?? can't remember. Visitors are kept to a minimum for the first three months, no crowds ... when he needs to go to clinic, he will need to wear a mask. He's been put on two antibiotics twice a day for one year. We will have his reevaluation at 100 day post transplant (at McMaster), then meet with the docs in Toronto to discuss further follow up care.
Will update you after clinic tomorrow,
Thank you all for the support we've received while away, your thoughts and prayers have gotten us to this place we are today!!
Love to everyone,
Beth
Wednesday, October 20, 1999 at 07:03 PM (CDT)
DAY 15, WC 3.4
DAY 16, WC 1.8, HB 82, Plt. 32
Sorry I missed an update. For the last two days Austin has been busy roaming the halls. Yesterday they unhooked his IV at 9am until 9pm, so he was totally free. Felt great I imagine!!
Today he's been unhooked since 9am, they are going to hook him up for an hour at 9pm, then he will be without IV until the morning for an hour. They've completely taken him off TPN. He is down to one IV med, his antibiotic for the line infection. He had to start taking oral meds yesterday. He is drinking great, and eating ok ...
So I guess you've heard the news ... who know who is going home on Friday? Whew ... we did it !!!!!!!
Nana has been busy busy busy cleaning the house all day today. Lots to do, I imagine some spots in the house have a year's worth of dust building up! If you've stopped to take a break tonight and are reading this tonight Mom, please STOP and call it a day.
Well, that's all I have to tell you. Austin is doing and looking terrific.
Have a good night,
Love Beth
Wednesday, October 20, 1999 at 07:03 PM (CDT)
DAY 15, WC 3.4
DAY 16, WC 1.8, HB 82, Plt. 32
Sorry I missed an update. For the last two days Austin has been busy roaming the halls. Yesterday they unhooked his IV at 9am until 9pm, so he was totally free. Felt great I imagine!!
Today he's been unhooked since 9am, they are going to hook him up for an hour at 9pm, then he will be without IV until the morning for an hour. They've completely taken him off TPN. He is down to one IV med, his antibiotic for the line infection. He had to start taking oral meds yesterday. He is drinking great, and eating ok ...
So I guess you've heard the news ... who know who is going home on Friday? Whew ... we did it !!!!!!!
Nana has been busy busy busy cleaning the house all day today. Lots to do, I imagine some spots in the house have a year's worth of dust building up! If you've stopped to take a break tonight and are reading this tonight Mom, please STOP and call it a day.
Well, that's all I have to tell you. Austin is doing and looking terrific.
Have a good night,
Love Beth
Monday, October 18, 1999 at 12:18 PM (CDT)
DAY 14
WC 2.5, Polys 1.75
Everything is going great. The doc was in this morning and told me that Austin is truly a miracle. He is doing so well.
His counts have come up enough that they are stopping the GCSF (the med that stimulates white cells). So he's on his own, his counts will drop tomorrow, then we should see them coming up again. They're stopping all the antibiotics except the one that is sensitive to his line infection he had. They have cut his TPN down to 16 hours.
He has been doing great drinking, had a bowl of cereal yesterday, and this morning. He tried to eat an animal cracker, but didn't like the feel in his mouth. I'm going to try get him to have some soup later on. The doc says this is great news that he is keeping food / drink down. It usually takes the kids a lot longer to get the gut working again. She seems amazed at him.
Had a good visit with the kids yesterday. We went out for supper with Nana. Austin visited with them again, he was having a great time seeing them.
Will update later,
Love to everyone,
Beth
Saturday, October 16, 1999 at 09:22 pm(CDT)
DAY 12
WC 1.4, Polys 0.92
Hg 92, Plt 60
STEP DOWN ISOLATION!!! YAHOO, the nurse came in this morning singing "You can come out now!"
Glen and the kids visited. I took them for a while, then Glen came with us and had dinner at Red Lobster. mmm mmmmm. I don't know if I was just that hungry, but boy was that good! I can't stop thinking about it, I might just go back again today!!!
Then the grand event. Austin came out of his room to visit with Aaron and Amber. It was hard for Amber I think, because the rules are -- no hugging, no kissing, no touching ... it was driving her nuts. Austin has to wear a mask when he leaves his room, which he didn't mind at all. Of coarse Aaron & Amber had to have one on too!
And the even grander event, Mommy gets to sleep back in his room; so now EVERYBODY will get some sleep!!
The bandages from surgery came off yesterday. It was not a nice scene. Poor little guy.
He has been drinking a bit more, and tried to have some soup (didn't), and had a bit of cereal. The most amazing thing through all of this is that he didn't get ONE mouth sore, not one ... thank god. The boy next door has had them for three days and it is not nice. He is in ALOT of pain.
So that is about it for today. Austin can have HEALTHY visitors in the hall (sorry, no children).
Have a good night (I know I will),
Love Beth
Friday, October 15, 1999 at 07:01 PM (CDT)
DAY 11
WC 1.0, Polys 0.62
Our nurse greeting me on the way in with Austin's counts, and of coarse a great big smile, everyone around here gets a little emotional when the kids engraft!!
Austin is doing well, his temp has been normal. He had his central line removed this afternoon. He went into surgery at 12:00, and they finished at 1:45. They took the infected one out, and put a pic line in his arm. This can stay in as long as he needs it. The surgery went good, the line went in on the first try. The doc had said sometimes it takes them quite a few tries. The only problem they encountered was that Austin's platelets were pretty low, and they didn't have any in the hospital to infuse, so he had some bleeding. They had to apply pressure bandages to clot the blood. I can't believe there was NO platelets for him. So anyway, he's bandaged up like the Michilan man. I think they're going to have to put him under tomorrow to get them all off! LOL
He's been feeling fine since he's been back in his room, and he actually sucked back a bottle of orange juice this afternoon. The first real drink he's had in ten days.
The doc will tell us tomorrow whether or not we can go to step down isolation. She figures we will. Glen and the kids are coming, they will be so excited when they find out they might get to visit with Austin.
Have a good night,
Love Beth
Thursday, October 14, 1999 at 08:39 PM (CDT)
DAY 10
WC 0.6, Polys - seen some
YAHOO!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
HB 98, Plt 18
Happy to report we had a very uneventful day, well other than the fact that Austin has a white count. GRE-A-T news!!! The counts we are waiting for is the grans (or polys) to be 0.5 for three days in a row, then we move to step down isolation. Then Austin can come out of his room (with a mask), and have visitors. And Mommy can sleep in his room again (Ahhhh!!). So keep your eye on the counts, we sure are.
The surgery didn't happen today. He was NPO (no food or drink) all day today waiting for them to come up and get him. At 7pm, they came and told us it was a no go, and they have a time slotted for tomorrow. Here's the twist ... Austin's temperature has been normal through the night and all day, he is feeling good, he is very stable, has started to engraft and the culture they took on the 12th is negative. So they are going to discuss whether or not to go ahead with pulling the line in the morning. So again, we'll see. They did tell us that he will need to be on IV antibiotics for at least two weeks, possibly three.
As far as his mood, he has been great. He had a good visit with the child life volunteer, made a doozy finger painting picture. He also got his visit from the music therapist (finally, he's been asking every day for a week where she's been). It was so cute ... when she was scrubbing up to come in he told Glen and I we had to leave, and to tell Nana she couldn't come in either. I guess he wanted to let loose and didn't want an audience!! Ruth had said last week he was having a ball with the instruments, and a doctor had walked by and peeked in the window, so Austin told her to close the blinds. LOL
Sharon has left, and Nana is here. She is going to try the night shift tonight. Hey Corinne, maybe you can keep her up on ICQ all night????
Good night & love to everyone,
Beth
Until we're home: ICQ#35986284
Email: pconsoli@interlynx.net
Wednesday, October 13, 1999 at 08:47 PM (CDT)
DAY 9
WC 0.0, Grans 0.0
HB 113, Plt. 31 (No transfusions)
Austin has been feeling much better today, he's been awake since morning, and he's determined to stay awake all night playing Nintendo.
Some news today The doc was in this morning going over everything that has happened in the last day. The fever he spiked last night of 40.1 was probably a reaction to his blood transfusion, not the infection. It spiked about an hour after he got it, and through the night went down and hung around 37.5
Radiology called up and indentified the infection Austin has. It is called capnocytophaga species. The docs don't know much about it, as it is a rare infection ... so they want to remove his central line. They will be doing this tomorrow. They're not sure what they are going to be using for his new line, but probably a pick line in his arm. They've put him on a new antibiotic clindamycin. They stopped the vanco.
That's about it; he was in very good spirits today. Daddy came to visit for the afternoon which made us both pretty happy!!
Love to everyone,
Beth
P.S. I've put the email address I can be reached at on Austin's home page.
Tuesday, October 12, 1999 at 08:29 PM (CDT)
DAY 8
WC 0.0, Grans 0.0
HB 78, Plt. 18
W'ell today was anything but dull, not the best day, but certainly not the worst. Lots of things are happening.
Last night, Austin's fever persisted, so they put him on a new antibiotic, vancomycin. He had a reaction to it, his head turned red as a beet. So they've adjusted the way they are giving it, and it seems to have helped.
He had his ultrasound today, I am still waiting to hear the results of that. The tech thought she might have seen something, but wasn't sure.
Last night, I was going over Christa & Dror's journals, so Michelle, your message was timely. The first thing I asked the doc this morning was if the fever could be from engraftment. She said it was very possible, but they don't rule out other things. She said she would check his smears to see if any polys were hanging around. Sounded pretty promising ...
The fever has stayed with him through day. The doc came back this afternoon with the news that one of the cultures done that first night of fever has come back positive. Gram Negative Bacilli is the bacteria growing. It is an infection in his central line. They were going to check further to see which particular strain it is, could be E Coli, or Pseudomonas. They were also going to see which antibiotic the culture was sensitive to. She told me within the next 24 hours, we will know more and it's very possible he will need his line pulled.
We had a visit from the Infectious Control Doctor, she explained everything and said they would suggest trying an antibiotic before pulling the line. The BMT docs aren't freaking out yet, because Austin is still pretty stable ... if he becomes unstable, they will take him immediately and take it out. So tomorrow he might have his tubes out, a day I was looking forward to under different circumstances ...
Austin's mood today was less than pleasant. He was very quiet, a wee bit sad, and at times a little whiny. I figured it was because he was anemic, but wasn't sure; could've been the fever / infection ??? His blood products were ordered this morning, they didn't come up until 6 pm. In the meantime, his gums had started to bleed and he was pretty lathargic. I imagine by this time (12 hours later), his hemoglobin had went around / below 70. Thirty minutes after getting his whole blood, he was talking away, smiling again, and we played Nintendo together. It was definetely his low counts.
Oh ya, another thing, the doc had said she checked the smears, and didn't see any signs that engraftment is taking place; something she says she can tell at least two day before. So no counts for AT LEAST three more days :-(
Sharon is still taking the night shift. Nana is coming on Thursday. I'm so relieved to have them both to help out, I don't think I could stand leaving him alone. Tonight I worry about septic shock, something that can happen when there is infection in the blood.
His temperature tonight 8pm was 40.1, it's 10pm now and it's went down to 38.5 on Tylenol. They are going to start another new antibiotic tonight, Ciprofloxacin. This is more specific to the type of infection he has. Let's pray the fever goes away tonight, and those lines can stay put!!
Well, I think that's enough news for one day, hopefully tommorow is a little more boring!
Love to everyone,
Beth
P.S. Going through Dror's journal -- I noticed that he was quite content eating candy during transplant. Thanks Seffi, Austin hasn't eaten or drank in 7 or 8 days, this morning he just LOVED the life saver sucker I brought him for breakfast. He wanted one for lunch and supper too!!!
Monday, October 11, 1999 at 09:18 PM (CDT)
DAY 7
WC 0.0, Grans 0.0
HB 80, Plt 27
Happy Thanksgiving to everyone. I'm missing not being home on this holiday, it is my favorite, (well, besides xmas); but I'm certainly not sorry we're here. Just think weeks ago this wasn't an option for Austin, and now it has become a possible curative treatment. I can't be more thankful.
In fact, I am thankful for ALOT of things. Boy, if I started my list, you guys would be snoozing before long!! I've learnt so much in the past year and what it means to be truly thankful for the things we take for granted everyday. I hope I NEVER lose sight of that again. This year has brought lots of challenges and heartache, but it has also brought so many good things, lots of good times and lots of love!!
Austin has had another good day. His temperature has gone up tonight though - 39. The nurse just finished doing cultures. So far, the cultures from the other night are all still coming back negative (they test for infection). The tests for c-diff and toro are both negative, this is good news. There's talk about starting a fungal workup, which tests for any signs of - you guessed it - fungal infections. Bloodwork, an ultrasound and a CT Scan are done.
His throat has been bothering him a bit today, it's starting to hurt when he coughs. But a good sign, he was taking sips of water all day and didn't have problems swallowing.
So, pretty much a quiet day ... and yes, I did get my turkey. There is a nurse here who grew up in Smithville, she went home for the weekend for Thanksgiving. I was joking with her on Thurs. about bringing back some dinner. This morning she popped in with some turkey for me. She was really surprised when Austin perked up and said he'll have some ... but she checked and he can't have food made at home. Shucks!!
Mom & Art came up with a turkey dinner for me and Sharon, so the day wasn't so bad after all -- and to make it feel like a bonafide Thanksgiving dinner, we even have leftovers for tomorrow!!
Love and thanks to everyone for being here for our family,
Beth & Austin
Sunday, October 10, 1999 at 12:07 PM (CDT)
DAY 6
WC 0.0, Grans 0.0
HB 89, Plt. 11
Oh how I'm dreaming of the smell of turkey right about now! I've got big plans when we get home, like ... pumpkin pie, loads and loads of mashed potatoes, turkey, more pie, more turkey.
Everything is going good, as the doc says "very well", and as the nurses are saying "amazing". Austin is just incredible, he hasn't complained once, and he just keeps smiling. I swear he even goes to sleep with a smile. Our new neighbours commented on being able to hear him laugh and how well he must be doing.
Same scoop, the docs come in and say they have "nothing" really to tell me. He's very stable, good heartbeat, good blood pressure, his electrolytes are under control, his fluid outs have been better, his creatine and urea are at good levels. He hasn't eaten or drank anything for five days now, but that's not a concern ... what is REALLY good news is that he has an interest to eat, just can't do it. He tried a chip yesterday and spit it out fast, then later tried a corn pop and said it tasted like soap. Something along with the bad buggies that get taken away are his tastebuds. So not to worry, as soon as food tastes okay, I'll bet he'll be eating the house down.
He continues to need platelets, which is expected.
I had a really good visit with Aaron and Amber yesterday. They are so wonderful, boy how did I get so lucky??? I took them swimming, they had a great time jumping off the diving board. Amber had no qualms, she just jumped right off, Aaron on the other hand really needed to be talked through that first jump. But after that they kept going and going .... Took them out for a bite to eat, and had a really good talk with both of them, catching up on their lives. They're coming back today, I just wish Austin could visit with them. He misses them too!!
Well that's about it for now,
Love to everyone,
Beth
P.S. I was wondering if anyone could do some checking for me, and find out if there is a local number I can be using for interlynx. I am sooooo thankful that someone has donated the use of their laptop, and would LOVE to make use of the 90 hours that comes with it ... but that would cost me, let's see ... $540.00 OUCH. So if anyone knows or can find out I'd REALLY appreciate a Toronto number ... TIA, Beth
Saturday, October 09, 1999 at 08:47 AM (CDT)
DAY 5
WC 0.0, Grans 0.0
HB 94, Plt 34
HAPPY "4TH" BIRTHDAY CHRISTA!!!
Another good day yesterday, Austin was in good spirits. He feels OK, a little sleepy, he fell asleep for the night at 7pm. He was u p a few times, him and the toilet have become very close .. he has to visit quite frequently.
Everything seems to be going good, no real concerns. He had a TINY cough ysterday morning, they don't fool around here; they came up in the afternoon to do a chest xray. The doc didn't think it was anything to be concerned about, but wanted to be sure it wasn't something brewing. His electrolytes are still pretty screwy, but they adjust his TPN accordingly. His fluid output hasn't been the best, so he's needed a med a couple of times to help him keep balanced. They adjusted his fluid intake last night, so maybe that will help. He's needed platelets every day, last night he woke up with a nose bleed. I HATE not being here with him through the night, but he's been good about letting Sharon help him.
Glen and the kids are coming up today, I can't wait for them to get here.
Love to everyone,
Beth
Friday, October 08, 1999 at 12:58 PM (CDT)
Hi everybody,
Well here I am, in Austin's room, able to update you every day (hopefully). The journal is up to date, so you'll have to go into the history and catch up!
To Bunny's teacher friend who didn't sign their name to their notes .... I can't ever begin to thank you for letting me use your laptop. You can't begin to imagine how thankful I am. A zillion hugs to you, you are ever so kind and I'll never forget what a terrific and generous gift you have given me. Thank you just doesn't seem enough.
Love Beth
(Thanks a million Bunny!!!)
Thursday, October 7, 1999
DAY 3
WC 0.1, Grans 0.0
Fever has broke, it wasn't so bad after all. The highest it went was 39.1, it was hanging all night at 38.5 to 39, and today is back to 37.4 or so, which is good news. All of his cultures are coming back negative so far, and still no mouth, throat sores. He needed platelets and red blood today.
I expect the next few days will be the worst; the nurses keep telling me that; they expected it Sun / Mon. So, what's today??? Thursday??? hmmmmm.
I'm just thankful for every good day .... it just means one less bad day!!
He's been in a super mood all day. We had fun drawing all the animals we saw at African Lion Safari, did puzzles, had a volunteer come in and play playdoh (made from glue and soap), and Daddy came for a visit today. My girlfriend Lynn came with him, so I got to visit with her while Daddy got to visit Austin.
I'm starting to feel a little home sick, I miss Aaron and Amber soooo much. (and Daddy too!) Aaron, I was so happy to read your messages on the computer. You've gotten to be such a BIG boy ... I love you sooooo much, and Amber too!!! You both make Mommy so proud!! I can't wait to see you, and tell Daddy not to forget your bathing suits! xxxxxx oooooo
Thank you to all the Grade One's who sent their get well cards to Austin. He loved all of them. He especially liked the one from Maria with a picture of Amber, Maria, Austin & Joseph. Thanks for the great keepsakes Mrs. Mascarin!!
Mary your poster was toooo funny!! You're a riot. Austin was laughing when I read some of it to him. Of coarse, he loved the pic of Mopy.
Linda, we received your package today. Austin's first priority tomorrow morning is to watch his new Pooh. Thanks for your kind words and I can't wait to use "Mommy's" treat!
I'm off to my castle,
good night,
Love Beth
Wednesday, October 6, 1999
DAY 2
WC 0.1, Grans 0.0
HAPPY BIRTHDAY GRAMPIE
Austin fell asleep around 10:30 last night, finally; he WOULDN'T stop talking, and was even talking in his sleep once he was there.
In the middle of the night, he spiked a fever and needed cultures done; he wasn't thrilled, they needed to poke his hand for blood work. By the time they were done it was 4:30 am. Fever is something that is expected ... let's just hope it doesn't hang around too long. When I left he was OK, when I got back in the morning, Sharon said he JUST got to sleep at 8:30 am. I thought OH NO, what happened, but she continued to tell me his was awake talking all night, and coloring, and etc., etc., I just have to shake my head ... WHAT A KID!!
The day was good, the fever hung around most of the day. He needed platelets today for the first time, they expect he'll need them daily until his counts recover.
He feels good and is in good spirits.
Tuesday, October 5, 1999
DAY 1
WC 0.2, Grans 0.2
This is good. This is what is supposed to be happening. Austin's old bone marrow has been wiped out (more importantly, so have the itsy bitsy cancer cells that might have been hiding). It will take the new bone marrow about two weeks to mature and his counts to start coming up.
Austin has been INCREDIBLY FANTASTIC today. If I had a dime for everytime he made me laugh today, I'd be a millionaire. He was in such a funny mood all day long. From 8am till 10:30pm NON STOP. He's eaten a little today and is drinking well. Everyone who has met him thinks he is soooooo cute. Well, who wouldn't?????
Daddy came for a visit, a volunteer came in for an hour to keep him company and the music therapist spent some time with him. He thought that was pretty cool.
It has been a great day!!
Monday, October 4, 1999
DAY 0
Day of Transplant
After a lot of running around to get ready, we finally made it over to isolation.
Austin received his stem cells at about 3pm. It took about 15 min., 30cc's, pushed into his line. Michelle, no smell - at all; I was ready, but just didn't happen! They premedicated him with Benadryl and Demorol so he slept until 7:30pm. When he woke up, he had his good spirits back and seemed more like himself. (It must have been the Dex. making him so sleepy.) He sat up and chattered away until 12:30 am. I spent the first night over in my castle away from Austin. He really seems OK with it, so that makes it alot easier.
Everything is going according to plan. Austin's counts have dropped, his white count was 0.5 today. His electrolytes are all out of whack, but that is expected and can be easily monitored / controlled. They have started doing blood work twice a day.
The isolation room isn't as bad as I imagined. Austin likes his new room; and that's all that matters. It's not as small as I thought, and other than having all the rules, it's no different that any other room. (except it's COLDER, Brrrrrr).
All in all a good day!
Sunday, October 3, 1999
Austin has been pretty nauseated. He vomited a couple of times, but he's mostly just doing a lot of spitting. He's been taking sips of water, swishing & spitting it right back out. He hasn't eaten since last night.
Today is Nana's last day here. She's sad to be leaving Austin, but is looking forward to spending some time with Aaron & Amber.
Glen came up with the kids and Aunt Sharon to do the switcheroo with Nana. She's going to stay with Austin at night while I sleep in my castle. We also had a visit from Bunny and Carrie-Anne today. Austin was able to visit out in the hall with everybody, must have perked him up because when we went back to his room he was hungry and had something to eat. They discontinued his Dexamethasone, an anti-nausea drug, which we believe might have been the culprit for the vomiting / nausea.
Tonight I will enjoy my sleep in Austin's room, it will be the last for a while.
Thursday, September 30 at 09:08 PM (CDT)
DAY -4
Austin is tolerating the chemo well so far. He had lots of fun with Daddy last night, painting & having "snow ball" fights.
He has been in good spirits. Last night he was playing on the computer beebopping to Fisher Price "FarmYard Rock" dancing & saying "this is Rock & Roll". Now, I know Fisher Price is far from "Ricky", but HOW cool is that?????
It's been a pretty quiet day - a lot of resting. He's still eating and is going in spurts of resting & playing.
He finished his third infusion of carboplatinum today. One of the biggest side effects of this drug in high doses is hearing loss. Let's all say a BIG prayer that Austin has made it through this without losing her hearing!
FRIDAY OCTOBER 1, 1999
DAY -3
A pretty quiet day today. Austin slept on and off until 4pm. He got an energy spurt for a while and we colored, made crafts & watched a movie. It's 8:30 now, and he's sound asleep.
He had his first signs of nausea today - vomited once.
He didn't eat much today. A bowl of cereal in the morning, soup for lunch & some more cereal before he went to bed. The nurse just came in and hung his TPN (Total Parenteral Nutrition). This will ensure Austin maintains his weight and gets the necessary proteins, fats, vitamins, etc. This is good - although Austin is still eating, how many vitamins are REALLY in Corn Pops??
Today his 72 hr. infusion of VP16 has finished and he received his first of two infusions of Cytoxin. He'll get another tomorrow, have a day of rest on Sunday, then be reinfused with his own stem cells on Monday. This will be the day he goes into isolation.
The docs came in and said they are expecting little problems through transplant based on how he's tolerated chemo the last 10 months. Of coarse they expect the more common problems, like mouth sores & low electrolytes. These sound like they're a sure thing. His counts are still pretty good. WC is 2.5, Plt 134 & HB 84.
SATURDAY, OCTOBER 2, 1999
DAY -2
Austin finished his last, so help us God, chemo ever!! It was very emotional for me, to think this could be it, I can't describe!
Austin has slept most of the day. He has been nauseaus, has vomited a few times. He seems to be sleeping pretty peaceful right now. Mom is in with him, I finally got on the computer at the nurses station. I feel a bit funny sitting here typing away. I told them to help because I was having severe withdrawal!!!
Glen and the kids came up today, and Donna & Brenda too. We had a great visit, the kids went swimming over at the Residence, we went out for supper, and had a bit of visiting here. Austin came out to see the kids for a minute, but had to go back to his room to "throw up" (Sounds awful).
Hopefully the nausea stops through the night so he can have a better day tomorrow. He has nothing planned but rest to get ready for his day on Monday when they will reinfuse his stem cells.
Should get out of here, I'll try to update soon!
Love to everyone,
KISSES to Aaron & Amber xxxxxxooooooo
Love Beth (aka Mom)
Wednesday, September 29, 1999 at 01:44 PM (CDT)
Finally found a computer!! Yahoo. Hopefully I'll be able to make my way up here once a day to check in and update.
Today is going good. I've updated since Monday, you can check the history.
Daddy has come for a visit, Austin was missing him already. I already miss Aaron and Amber, I haven't talked to them yet.
Right now, we're in the playroom, Austin & Nana are playing on a computer right beside me. The kids on the transplant ward can come up on Mon & Wed. afternoons. Since Austin will be in isolation on Monday, this will be his only chance, but Mom has requested to peep in everyday to see if I can use the computer.
The chemo is going smooth, so far so good. No noticeable signs in Austin yet that anything is any different. He's been eating, playing .. and always smiling. He likes it here.
He can have visitors until Sunday in the parents lounge. After that he will be in isolation for the next few weeks. Mom, Dad & Nana can always use a visitor!!
So for now, we'll be off ... I think I'll leave Austin and Nana to their computer, and Glen and I will run out for something to eat.
Love to everyone,
Beth
Tuesday, September 28, 1999 at 01:38 PM (CDT)
DAY -6
Austin had a good sleep, even though he's been up peeing every two hours. He's being SUPER DUPER hydrated. Blood work is done at 4 a.m., something I'll have to get used to. Austin has had to start taking some oral meds., he is doing a great job.
This morning he had an echocardiogram. Went well.
He also had his dental surgery. 1 hr 15 min. in OR to fill 6 cavities. I'm a little concerned about how he got 6 cavities??? The doc said that Austin's teeth were looking pretty clean & looked great. The problem is that they're too close together. Anyhow, doesn't matter, all the holes are filled up!!
Austin's already winning everyone over here. It's not hard to get sucked into all of his cuteness. He's soooo sweet.
The chemo has started, a 72 hour continuous infusion of VP16. He also received carboplatinum. Everything seems to be going pretty smooth, he's continued to be his normal silly self. He pooped out about 8 o'clock, got himself to sleep at 9:30.
Nana has gone to get some sleep, and I think that's what Mom will do too!
Goodnight,
Love Beth
Monday, September 26, 1999 at 01:35 PM (CDT)
We're all settled in. Austin says he already feels like he's at home. He's really surprising me how well he is adapting to all the "new" changes in his "new" hospital. His surgery has been booked for the morning, so we spent the day getting organized. Nana is staying the week. We've booked a room at the Family Residence right across the street, which is pretty handy. Everybody here has been really nice, and we all seem to be pretty comfortable.
Have a good night,
Love Beth
Monday, September 27, 1999 at 07:22 AM (CDT)
Here we are. Monday morning, the kids have left for school. It was hard to say goodbye to them, I'm going to miss them so much. They were pretty cool when I told them Mommy and Austin wouldn't be home until at least Halloween. Amber was just smiles thinking about Austin coming home and being all better. She was excited for him to know that soon he will have his tubes out and can go swimming. She was also excited to know that as soon as Austin's counts are high enough we'll be going to Disneyworld. They are both excited to be coming to visit us and stay in Toronto, maybe get a swim in! I hope their attitude keeps up, it will make this ALOT easier!!
Austin just woke up, he just spotted all the bags packed, and now is adding to the pile. Of coarse, Cutie Pie is right on top! He won't be able to keep him in isolation though, I'll have to conveniently "lose" him by the end of the week.
I'm REALLY hoping I have access to a computer, feel free (hint hint) to leave a message every day if you'd like ... I will need the boosts!!
So this is it for now, hopefully will update you soon. (If I can't, Louise has volunteered to keep the journal updated!!)
LOVE TO EVERYONE!!!!!!!
Beth
Sunday, September 26, 1999 at 10:38 AM (CDT)
Think I will try to explain what a stem cell rescue is, and what it entails.
It is great news that Austin has been deemed to be in a complete remission. But studies have showed that 80% of these children will relapse. They are researching everyday to find a way to stop this from happening. One method that seems to be working for some children is to give them a HIGH dose of chemo to ensure that any teeny weeny cancer cells that are left undetected get blasted and never come back again. Studies have shown that by doing this, it gives children a higher survival rate. 60% vrs. 20%. Even though 20% of children will remain in a complete remission in the state Austin is in now, we can change that to 60% by doing this stem cell rescue. Is there any doubt as to why we chose to continue treatment??
This high dose chemo he will be getting is similar in concept to the chemo he has been getting all along. Except it's HUGE. For example, at the beginning he received a drug of VP16 for one hour each day for three days. On Tuesday, they will start a continuous dose of VP16 for 72 hours. A drug called carboplatinum was given to Austin diluted over 5 hours at the beginning of his protocol. This week he will get a bigger dose, undiluted over 1 hour. Get the drift??? IT'S POWERFUL. These were two drugs used for his protocol, I'm not sure what drugs they are going to use with Austin.
Now, when he gets this chemo, the same thing will happen as always, his counts will drop. White counts will drop to zero. Platelets and hemoglobin will drop drastically. With the chemo he has received so far, his counts always bottom out, and then he starts to recover, or his counts start to come up. With the chemo he will be getting this week, it is such a huge dose, his counts will go to zero and have NO chance to recover. It is a lethal dose of chemo. Don't panic, remember in April we went to Toronto to harvest Austin's stem cells. These will be reinfused after the chemo so that his counts will recover (or be rescued).
Now this will take some time before his white counts starts to come up. It will be at zero for a while. This means that the chance of getting infection is pretty huge. So he will be placed in an isolation room that is designed to minimize his chance of getting infection. Most times though, infection comes from within their own body, so we have to take lots of measures to minimize this. This means antibiotics, etc. etc. The most common infection is mouth sores which can be painful. The pain can somewhat be managed with morphine.
When his counts start to recover, he will be placed in step down isolation, then he will be allowed to come home, but will have lots and lots of rules!!
Hope this helps,
Will tell more later,
Love Beth
Saturday, September 25, 1999 at 09:20 PM (CDT)
Two days just isn't a lot of time to get organized!! The most I got done today was to organize my thoughts, I guess that makes for one REALLY busy day tomorrow!!
We still are trying to organize who is going to be in Toronto with Austin & I, and when, and who will stay with the kids. I think we're making head way and by tomorrow should have some sort of schedule.
I have no idea what to bring, so I'll just have to bring everything.
As far as staying, the first week I'll be able to stay with Austin in his room. Our helpers will need to stay overnight somewhere. Still trying to organize that. When Austin goes into isolation (on the 7th or 8th day), I can't sleep in the room with him. Usually you would stay at the Ronald McDonald House, but they are closed until November because they are renovating. There is a parent's residence, but for the price, we might as well get a hotel room. We've arranged it so we'll have someone staying in the room with Austin at night while I go get some sleep; and take some kind of turns doing it that way. The important thing for me is to know that Austin is never left alone. This means shift work, one person could never do it alone ... a girl's gotta eat and sleep too!!
Didn't hear from the dentist today, I'm still a bit nervous about getting time booked in on Monday for his fillings. They won't start the chemo until that's taken care of. One more hurtle, but a little one!
Well, I have to get back to my lists, and get a good night sleep so everything can be in order for Monday.
Have a good night,
Love Beth
Friday, September 24, 1999 at 11:05 PM (CDT)
What a roller coaster ride this week has been!!
We were admitted Wednesday night for chemo as planned, although I was still very uncomfortable going through with this until I knew for sure ALL the docs were on the same page and that Toronto was going to be notified of Austin's latest breaking news. I paged the doc several times on Wed. & never received an answer, so I called Toronto myself. It wasn't much help though, she just told me that the docs from Mac would have to call TO and set things up. On Thursday morning, I wanted to speak to the doc before Austin received his chemo, just to make sure everyone was on the same page. He told me that he would call TO tomorrow (Fri), and unfortunately it might be a 2-3 month wait for rescue ... so in the meantime keep him on the chemo and he would need to be reassessed again to see where we stood. Well, that wasn't what I wanted to hear to say the least, but we went ahead and started the chemo. (around noon).
At six o'clock, I was on my way out and Dr. Barr stopped me in the hall. He asked how soon I would like to be in Toronto. I said he KNOWS how soon!! He asked how TOMORROW sounded?? Toronto had called and there was a cancellation, so they are ready for Austin.
We left Mac this morning and went to Toronto for his assessment. He needed a kidney function scan and a dentist appt. We also spoke to Dr. Calderwood. He sounded very pleased with Austin's progress, and had used the phrase "clinically he is in complete remission" (SOUNDS SOOOOOOO GOOD!!). He also said that studies show children going into rescue in a complete remission usually do very well. He said there is a 60% chance that Austin will remain in a "complete remission"!!!!
We will be admitted Monday afternoon and start high dose chemo on Tuesday for six days. On the seventh day he will get a rest. On the eighth day they will reinfuse the stem cells that were taken from him in April, and he will be admitted to isolation until his counts start to recover. We were told the average stay is 28 days.
The only other thing, when Austin had his dental checkup, they found 4 (YIKES!) cavities. They NEED to be filled before Tuesday, so they will set something up hopefully Monday afternoon to have them filled. He will need general anaestetic (sp?) and it will take about an hour (in OR).
I have so much to tell everyone, but I think that's enough for one journal entry. Hopefully I have time this weekend to give everyone an idea about what a rescue does, and why it is necessary, etc, etc...
LOVE TO EVERYONE,
HUGS TO EVERYONE,
Beth
Wednesday, September 22, 1999 at 04:14 PM (CDT)
God, please bless this family and all the
families fighting this horrible disease.
We are your loving children and we accept
your will. Please give our children the
strength to beat this. Our world is in
great need of real heroes. These children
will lead us all to salvation. Please
give them the miracles they need so that
they can show the world the power of your
love. We ask this through Jesus Christ
your son our Lord.
Amen
Came across this while I was packing and wanted to share. We'll try to keep everyone in tune to what's happening during the week. Hope to see some visitors, and for the rest, will be thinking of you!
Love to everyone,
Beth
It is with much sadness to tell you that a baby girl that I had become so fond of in the last seven months left this earth to become one of God's angels yesterday. I feel pain for her parents, please say a special prayer for them and Baby Isha tonight.
Tuesday, September 21, 1999 at 03:58 PM (CDT)
NEGATIVE, NEGATIVE, NEGATIVE!!!!!!!!!
Yes, it's ALL negative!! Dr. Pai has spoke to Dr. Reed in London, who confirmed the scans last week were completely negative. Because he had used a double dose usually given for scans, he is very confident that this result is an accurate one. The Bone Marrow aspirate AND biopsy both came back NEGATIVE!!!!!!!!!! All the other scans & tests came back NEGATIVE!!!!!!!!!!
We will still be going to London to do one more scan using a different drug to confirm even more that there is No Evidence of Disease. When this is confirmed, arrangements will be made with Toronto for a stem cell rescue. A BEGINNING TO AN END ... FINALLY!!!!!!!!!!
In the meantime, we will slip in another round of chemo until London is prepared to perform the scan. They can only get this drug twice a month. Then Toronto will have to arrange for Austin to come, which can take ?????. So THIS time, we are making sure that treatment continues, we will be going in tomorrow night, and starting a five day chemo on Thursday.
Pay no attention to our meeting in Toronto last month ... it IS NO LONGER applicable! Austin is going into a rescue disease free, and all of that hogwash we were told does not mean a thing. We still have a long hard road ahead of us, but at least we're still moving!!
Thank God,
Beth
Sunday, September 19, 1999 at 11:08 AM (CDT)
Friday we finished all the testing. Austin had an ultrasound and a CT Scan. He got through the test very well. The worst part I thought was having to wait until we were done for him to be able to eat anything. (He finished the CT Scan at about 2:30). He was able to drink at 12:30, but the hitch was it had to have the contrast for the CT Scan mixed in ... YUCK!! I tried cream soda this time instead of juice, and it worked like a charm. He finished a can of it in five minutes flat. By the time they were ready for him so much time had passed that he had to drink another one again ... he sucked that back just as fast. Now I know what to use next time!!!
We will be going to clinic on Tuesday to find out what fate this disease has in store for Austin and our family. This is the doozy guys, either we will continue treatment or be told there's nothing else for him. Whatever they tell us, I can tell YOU, that Glen and I aren't ready to give up and WE WILL continue doing whatever we can to kill this monster living inside of our precious child. Today, right now .. I see no other alternative. We will continue to fight the fight, until Austin tells us otherwise.
OK, enough of that stuff, it's enough to make you crazy. Yesterday, we threw all of that to the side and had a fun day at the African Lion Safari. Help a Child Smile organizes this yearly excursion for all the families who have been treated at McMaster over the years. The kids had a good time, Nana came along too. Austin loved the elephant show, Amber's favorite was the giraffe, and Aaron liked the cheetahs. Nana enjoyed the safari bus tour.
There's been some pretty sad things happening on 3B lately, it was good to see families out having some fun for a change!
Of coarse, I will let you know what happens on Tuesday; thank you all for being here,
Love to everyone,
Beth
Thursday, September 16, 1999 at 8:52 p.m.
Well that's over with, now it's just a BIG waiting game. We have clinic on Tuesday to discuss everything going on. The procedure went well, I was a bit nervous - last time he wasn't quite ready as they were putting him to sleep. I wondered if he remembered and would be scared. But he wasn't, he told me he was going to have a long nap, and boy did he. He was so sleepy, he was whoozie when he woke up for quite a while. They did a bilateral bone marrow aspirate / biopsy so they needed to give him a little stronger dose of sleepy medicine. So other than that, not much happening today.
Wednesday, September 15, 1999 at 10:01 pm
Tonight was another "shining" example of the goodness that comes from people's hearts in the middle of all this craziness our family is having to endure.
Tonight we met some terrific people who have hearts of gold!!
A few weeks back, we got a phone call from Merry Anne, with an invitation for dinner at Swiss Chalet. She had read about Austin in the local paper, and had really wanted to do something special for our family. She had told me that she wanted to present Austin with a gift, a huge stuffed Woody Woodpecker. She called later to let me know that she wanted to do a little something for Aaron and Amber as well. She was also speaking to my mom and decided to make this a belated birthday party for Austin.
Well, if that already wasn't the nicest thing someone we had never met could have planned, let me tell you a little about our night tonight:
They had our table decorated so beautiful. Two fresh flower arrangements, one for me, one for my mom (she came along), a huge arrangement of Happy Birthday Balloons, party hats & stuff for the kids, a fire truck piniata (sp?) hanging from the ceiling, a beautiful candle lamp as the centre piece. We had an excellent meal, the kids were having a great time ... Amber was quite the character, Austin was too busy eating everyone's garlic bread and Aaron was just being silly. They were so excited. After our meal, the staff came with a cake (Tim Horton's) and sang Austin Happy Birthday. I wish I had a video camera because it was just tooooo cute, he was being so silly.
After the cake, the staff returned ... with sooooo many presents for the kids; it was like Christmas in September. I didn't even get a chance to see most of what they got, they were having so much fun opening everything. They presented Austin with his woody woodpecker ... it was love at first sight. Austin is now sound asleep with his arms wrapped tightly around his "Woody Pecker" LOL.
Well if this wasn't over and above a dinner and a small surprise for the kids, these people just didn't know when to quit. They presented us with coupons for dinner at Village Inn Steakhouse, a sitting and 8x10 family portrait at Village Studio, a coupon for an 8x10 frame for the picture, a manicure (Glen will have to fight me on that one), coupons for video rentals, an invitation to the Grimsby Fire Dept. for a tour, a fruit basket for my mom, and a two night stay at Queen's Landing in Niagara-on-the-Lake (CAN'T WAIT!!!). I hope I'm not forgetting anything. All of these things were donated by local businesses (Grimsby), and was the result of a lot of work from the staff at Swiss Chalet, Merry Anne in particular - who was supposed to have "a" special gift for the kids. Her boss "John" was also terrific, and I'm sure had a big part in putting this night together.
So for the staff at Swiss Chalet, thank you so very much. Your effort is well appreciated, you have given us a night to remember. The kids had a great time, and it's always the best to see them laughing and forgetting everyday things. These are the moments I will treasure always.
Merry Anne, you are so sweet. You gave my children the best gift of all, a night of fun, laughter and just plain silliness. Be forewarned, my kids have pretty good memories ... they are already talking about Austin's NEXT birthday at Swiss Chalet!! (Next year, we'll get the dinner, OK??), and John - Aaron still insists you get your own coffee, after all you're the boss!
Thank you so much, and I hope to keep you in touch with Austin's story through this webpage.
That being said, Austin will be having his bone marrow asp/biopsy tomorrow. Bunny had reminded me yesterday that God always has a plan in mind ... thank you for that gentle reminder, it has me once again believing that everything will be OK, He is right beside Austin every step of the way ... I trust that He will take care of my baby!!
Good night everybody,
pleasant dreams.
Love Beth
Tuesday, September 14, 1999 at 08:04 PM (CDT)
Not much going on today. Austin and I spent the day doing NOTHING. I really miss Aaron and Amber through the day, mostly because Austin misses them so much. It seems like such a long day with him being all by himself - I have to get into friend mode I guess, he's constantly asking to play something .. and of coarse I'm in housemom mode busy trying to get caught up doing everything around here. There must be a middleground somewhere .... just wish I could find it.
Took the kids to Chantey's for fries and to visit Aunt Sharon & Lynn, a good friend that I haven't seen in ages. Had a good visit, it was nice to be out somewhere with the three kids. Then we went to Aunt Louise's for a SHORT visit, seems to be all we get in anymore.
Anyway, someone is oh-ohing me on ICQ, better see who it is!
Love to everyone,
Beth
Tuesday, September 14, 1999 at 08:04 PM (CDT)
Not much going on today. Austin and I spent the day doing NOTHING. I really miss Aaron and Amber through the day, mostly because Austin misses them so much. It seems like such a long day with him being all by himself - I have to get into friend mode I guess, he's constantly asking to play something .. and of coarse I'm in housemom mode busy trying to get caught up doing everything around here. There must be a middleground somewhere .... just wish I could find it.
Took the kids to Chantey's for fries and to visit Aunt Sharon & Lynn, a good friend that I haven't seen in ages. Had a good visit, it was nice to be out somewhere with the three kids. Then we went to Aunt Louise's for a SHORT visit, seems to be all we get in anymore.
Anyway, someone is oh-ohing me on ICQ, better see who it is!
Love to everyone,
Beth
Monday, September 13, 1999 at 04:28 PM (CDT)
OK, I'll give this a shot:
MIBG stands for I-meta-iodobenzylguanidine. It is one of the most accurate scans for detection of neuroblastoma. It is performed in Nuclear medicine. The child is injected with a radioactive material (isotope) and then 48 hours later will have the scan. The isotope accumulates where cells have certain markers, neuroblastoma is made up of some of these certain markers. These "hot spots" will appear on the scan and give a pretty good idea of where neuroblastoma is in the body.
At diagnosis, Austin had uptake on the MIBG at both tumor sites, and in the bone marrow.
In January, showed both tumor sites but no tumors in the bone.
In July, his MIBG was normal.
Also remember, in July his bone marrow aspiration / biopsy came back positive.
There could be several reasons why he still has pos. bone marrow, but neg. MIBG. I'm not going to guess now, I'll wait to see what happens this time.
See this really is confusing to try to explain. I'm trying ....
After our meeting with Toronto, we spoke to a doc in London who felt Austin would be a good candidate for MIBG therapy. This is the same procedure they use for the scans, but they use a huge dose of isotope (MIBG), with the idea that the radioactive material will seek and destroy neuroblastoma cells. I will explain this in better detail down the road if needed and all it involves + possible side effects.
The scan today was to see if there was any uptake on the MIBG scan to better judge whether or not Austin would be suitable for therapy. One of very few options left for him.
If you remember last time he had scans, I described one that he had to lay perfectly still for 7 ten minute scans. That's hard for any three year old to do. He lays on a table and a big round camera either goes on top or below him. All the while he can watch his videos keeping his mind occupied, but CAN'T wiggle, so no dancing to the music.
In London, it was a bit different. It was a machine very similar to the one they use for CT Scans at Mac. He had to lay on a table that slides through a round hole with cameras inside on the top and bottom, the top one coming about an inch from his face. He had to lay perfectly still for the entire scan, with no breaks between, which took about 40 minutes. He wiggled his feet a bit at the beginning, so he had to do one ten minute scan of his legs after he was done the biggy. HE WAS INCREDIBLE, he is such a brave, big boy. He stayed so still, he actually fell asleep once his head was right under the camera, and I held his hands to keep him still. He deserves a medal (again!!).
The doctor came in, read the scans and had a big talk with me and Glen. The scan from what he could tell (without comparing them to any others, which he requested from Mac and didn't have yet), didn't show any abnormal uptake. Very little if any from what he could quickly tell. I don't know if this is good news or bad news, YET.
So our next step is to have a bone marrow asp/biop. done and see what that shows. We'll get to that bridge when it comes, HOPEFULLY on Thursday. I will explain what the results mean for Austin when we get them.
We still need to get an overall picture and take ALL the scans / tests into consideration to find out what to do next.
I don't know if this explanation helped or just confused the hell out of everyone, but I kind of have to take it one step at a time, be patient with me ... I will piece the puzzle together for everyone as soon as we know more about the other tests, and our options ...
If anybody has questions, I really don't mind an email, in fact, it helps to talk about it, that way I can clear up what might be misunderstood, or reword things that I didn't explain very well, or left out. I really think it's important that the people closest to us (that's you), know what's going on, NO SURPRISES. You have no idea how much it means to have your support, just to know you're reading this is helping us get through this nightmare.
Have to get going with supper now, the Monday night football gang should be here soon, and I'll be losing my other half. Better feed him before kickoff!
Love to everyone,
Beth
Saturday, September 11, 1999 at 10:03 AM (CDT)
Yeh, the weekend has come. It's going to take a while to get used to waking up at 7 o'clock again, I was getting pretty spoiled there for a while.
The kids first week of school went pretty good I think. Amber is full of information, and Aaron, as usual, forgets everything. I ask him how was his day, he forgets, what did you do today, he forgets, who's in his class, he forgets ... etc. They looked a bit tired a couple of nights, we still have to work on that 8 oclock bed time thing!
We took Austin to his "other new hospital" yesterday in London. It was very easy to find, and didn't take as long as we expected to get there (about an hour and forty five minutes). He had his injection, and that was that. The scan is on Monday, at 8 oclock in the morning. Oh boy, I don't know about that one. We might just stay Sunday night, since we haven't a clue what traffic is like in the morning, we wouldn't want to be late. The 403 is down to one lane most of the way, it could take as long as an extra hour??? to get there.
I'm going to get together some info on MIBG today and try to explain it and what it does.
By the way, we will be sitting down with the doc after the scan to discuss the results, and where to go from here ... I'm VERY nervous, I ONLY WANT TO HEAR GOOD THINGS!!
Have a good weekend,
Love to everyone,
Beth
Thursday, September 09, 1999 at 08:26 PM (CDT)
Today went pretty smooth, I'm so proud of Austin ... he's such a terrific kid. So sweet, so gentle and so so smart.
He was so good for the scan, as always ... it was his bone scan he had done today. He needed to be injected with some stuff first, then we got to hang around the hospital for a couple of hours. Had some nice visits, and went back for the scan. Got some good pictures, Austin was VERY still. We won't have the results yet, I think the docs like to piece all of the tests together before they give you the whole picture - which is fine by me, I'll wait.
Austin is looking good, he's been in a fairly decent mood; he's not eating that great though - he seems to be hungry, but when he goes to take a bite, he needs to spit it out right away, and that's it, he's done. I have to try to find something that tastes good to him. Tuesday, I took him to East Side Marios for lunch because he wanted to have Marios bread. He ate the first loaf (he let me have a couple of pieces), and when the waiter came back he said "I think I need another loaf of bread", so he chomped away at the second loaf. Maybe it's just my cooking????
Tomorrow we go to London to get the injection for his MIBG scan. He will need to take iodine orally for five days after. The stuff is horrible, but we mix it with "Coke" (what else??), and he takes it just fine. This is to protect his thyroid.
Will let you know what we thought of the trip to London and Austin's "other new hospital".
Good night,
Love Beth
Wednesday, September 08, 1999 at 03:57 PM (CDT)
Okay, here we go ... tests start tomorrow. Austin will have a bone scan tomorrow, this is done in nuclear medicine. He has an injection at 10:00, and the scan at 12:00.
On Friday, we will be going to London to have an injection for his MIBG scan that will be on Monday. We are going to London because I have been in touch with a doctor there discussing an option for Austin that they can provide. I won't get into it what this entails just yet, let's wait to see what the scans show. If we do treatment in London, they will need to do this scan, so we might as well let them do it, rather than doing it twice.
His bone marrow asp/biopsy will be done as soon as his counts are high enough. We will have them checked Monday morning before we go to London, and hopefully have the procedure done on Tuesday or Thursday at the latest.
So let's all pray harder than we've ever prayed before, let's all close our eyes and pray that everything is going to be OK.
The best best scenario is that the MIBG scan and the bone marrow both come back clean. The second best (if you call it that), is that if the marrow disease is still present that the MIBG shows uptake. I will explain later.
Last but not least, today and tomorrow are very special days for very special people:
HAPPY "37TH" ANNIVERSARY MOM & DAD!!!
We love you both so much, the kids adore you and Glen and I wish you both the very best!!! Today ... and everyday!
Happy anniversary John & Mena ... if anyone from the office reads this, give them my best ... and I think about you guys often. Hope everything is well!
Tomorrow:
HAPPY HAPPY BIRTHDAY MOM!!
Art give Mom a big hug for us today ... we will see you soon. We love you, have a great day!!
and last but not least,
HAPPY "BIG 4" BIRTHDAY
to Austin's best buddy DUSTIN!!
We will see you soon, love you!
(B, pass the message on will ya?)
Hope everyone has a great day,
Love to everyone,
Beth
P.S. Cheryl: please don't ever feel you have to feel sorry for me .. ever ... I have everything I could possibly want. I have a loving husband who has been totally fantastic in supporting me and has been the most awesome father ... I have three beautiful wonderful children whom I love beyond words ... I have family and friends who I treasure more each day ... so see, what more could a girl ask for????
As for a night out, I seldom feel the need, I am quite happy right where I am, but thanks for the concern!! Can't wait to meet you when you come, Beth
Tuesday, September 07, 1999 at 07:25 AM (CDT)
Hi guys, well the kids are off to school, yippee!! Actually, they've only been gone twenty minutes, and the house seems TOOOO quiet - I'm going to miss them through the day. They both got ready for school in record time this morning, wish it was like that the whole year! Here's wishing all the kids a great school year, CHEERS!!
Clinic on Friday was so long. We were late to begin with and Austin needed platelets, just in time I think, he had a little bit of bleeding in his nose. His white count was up, and his hemoglobin was 82 - not bad, not great either. He seems good today.
We came home from clinic and packed up and headed north for the weekend to Miller Lake (near Tobermory). We came back last night. It was a nice relaxing weekend, hung around the cottage a little more than last time which was nice. Took the kids swimming a couple of times, peddle boat rides, went for a couple of hikes - that's about it, it is so beautiful up there - the water is so clear and blue (and the air too!!).
Austin and I are off to the clinic this morning for a check up. Maybe we'll get some dates for tests?????
Have a great week,
Love to everyone,
Beth
Thursday, September 02, 1999 at 05:38 PM (CDT)
Well everything seems to be OK (knock on wood please). Austin's temp. went up to 38.6 yesterday, but just as fast climbed back down to 38.1. I called the doc last night positive we were in (the hosp) for at least 3 or 4 days. He told us to hang and see what happened through the night. I'm so glad we did because his temp is normal today!! He's still not his usual silly little self, but at least he's keeping up to Aaron & Amber and hasn't hit the couch yet!
We have clinic tomorrow, and depending on his counts have planned a special weekend for our family. Will tell you all about it later!
Had a busy morning today running around, and a busy afternoon with Amber, her first "filling" at the dentist. It wasn't as horrible as I thought it would be, and I think Amber thought it wasn't that bad. She was so brave, she was giggling most of the time (nerves or just plain silly????) She has to go back next month to get two more filled. We also went to get her hair cut, she wanted it cut right off, to her neck, hmmmmm ... uh uh, I don't think so. We just had her bangs cut, pretty reasonable compramise, don't you think?? lol
Aaron had his last soccer game last night. They lost 3-0, but they played so hard. After the game, the coach treated the team to pizza. He had a good night out, and I really enjoyed our time out together.
Will let you know how tomorrow goes, see you all then,
Love to everyone,
Beth
Tuesday, August 31, 1999 at 02:34 PM (CDT)
Well he did it again, he lost those white counts somewhere and we don't know where to find them. We'll be checking under his bed tonight to see if they're hiding. Come out come out wherever you are!!
Austin's counts are low. His grans. were 0.1, platelets 17, and hemoglobin 82 - so no adventures planned for this week. We'll have to make our own around here. No transfusions today, we'll get checked again on Friday. Until then we keep our eye out for fever or bleeding. It would be nice if these counts were a sign that all those nasty cells got blasted too! (But it doesn't always work that way unfortunately).
Aaron and Amber had a fun day at their friends today, Aaron and Johnny were in soccer, hockey and Grade One together ... when I picked them up they were walking with their arms around each other. They miss each other, too bad though, they'll be in different classes this year.
I'm off to see what I can do around the house, I'm sure I'll be able to find something (the couch looks good!!).
Thanks for checking in,
Love to everyone,
Beth
WEDNESDAY UPDATE: Austin has had a low grade temp. since yesterday, hung around all night and is still there this morning.
Monday, August 30, 1999 at 08:49 PM (CDT)
At last, a day where everything seemed almost normal! Had a busy day, which helps. Austin is perking back up, nothing really came of his temperature. He's been dragging himself a bit, but as fast as I think he's pooped out, he pops back up and does the hundred yard dash around the house. Can't figure him out sometimes!
The kids are counting the days until school. Amber isn't in any hurry to start Grade One, she goes on how boring it will be, just sit there and work all day, hmmmm ... I think she's in for a surprise when she gets older, huh? Aaron misses all of his friends, so I'll bet he'll be all smiles next Tuesday!
Will update after clinic tomorrow,
Love to everyone,
The Luckiest Mom there is (and knows it),
Beth
Sunday, August 29, 1999 at 11:24 AM (CDT)
Hi everyone,
I know, I'm going through a SUCKY couple of days, but they shall pass, they always do!!
We're spending another quiet day at home. Christopher is here for a visit. Dave took Chris and Aaron to Merritville Speedway last night, sounds like they had fun. Mommy & Austin & Amber cuddled and watched a movie.
Austin looks fine today, but feels warm. His temp. is 37.8, so I'll have to keep a close eye out. Anything over 38.5, we're back to the hospital, so lets hope it goes away before it gets worse!!
Thanks for your words of encouragement, sometimes I need a good slap in the face!
Love to everyone,
Beth
Saturday, August 28, 1999 at 04:09 PM (CDT)
Hope everyone is enjoying their weekend so far! We're just staying put, not much happening; thinking of all you people golfing, swimming in your new pool, screaming on the "Drop Zone", etc.
Austin is feeling fine, Aaron and Amber seem to have settled with us home. It is so hard for them - please ALWAYS remember them in your prayers too, their lives have been turned upside down as well. Although we try our best to keep them "normal", it must be hard for them to understand all of this. I think they're pretty remarkable, and they keep me strong; I'm thankful every day that I have them in my life.
Helen has been visiting Mom, I'm glad they had a chance to visit. Helen was able to spend some time with the kids, I'm always HAPPY when someone has a chance to get to know these three incredible little creatures!!!
As August draws to an end, I can't help but think about this time last year. I can't describe the knot in my stomach I'm feeling. If only I got help sooner, what might be??? I'm driving myself crazy I think ... I know I can't change a thing; still, it breaks my heart to think of the pain Austin was in. I JUST WANT THIS TO GO AWAY ....
Love to everyone,
Beth
Friday, August 27, 1999 at 10:40 AM (CDT)
Hi All, yes we're home! Sorry for not updating sooner, I've been feeling like getting away from the computer lately, it takes up a lot of time.
Anyway, Austin is feeling good, his chemo was uneventful. He breezed through another one!! He's glad to be home, he told us he forgets what home looks like, until he pulled up the driveway, and said "Oh, now I remember".
His birthday was fun, thank you for all your wishes and gifts. Austin is so excited to be four, he's so funny.
We have clinic on Tuesday, and from there we start his evaluation. Will let you know more when I find out.
Hope everyone had a good week, I was so happy the weather cooperated for the corn roast. I missed not going, but at least I got a little taste of it (thanks Eric!).
Love & Hugs to Everyone!!!!
Love Beth
Friday, August 20, 1999 at 07:24 PM (CDT)
Running kind of late, as usual. It's 8:30 and we are still on our way to the Hosp. That's OK though, Austin likes to run around a bit first, and the nurses don't mind having us come after the rush of changing shifts.
Platelets came up pretty good. They were 114 today.
FOUR more sleeps until it's AUSTIN's 4th (WOW) Birthday!!! Six sleeps till we come home. (Have you already done the math????). Oh Well, we have something SPECIAL planned, of coarse!!.
Will update you as soon as I'm able.
Have a good weekend,
Love to everyone,
Beth
Wednesday, August 18, 1999 at 03:40 PM (CDT)
Wow, I don't even know where to start. I guess first by telling you that Austin is feeling wonderful, looks great and has been very busy playing and having fun.
** CHECK OUT THE NEW PICS **
As I told you, the meeting in Toronto wasn't good. So we decided the best thing to do was to clear our minds ... and we did ... we left Friday for our "escape". It was great!! Gary & Shiela invited us to their family's cottage, about 15 minutes south of Tobermory. The kids just loved it, they could live there the whole summer long (I wonder how long before they missed their Nintendo??). We did the glass bottom boat on the Georgian Bay to Flowerpot Island. Spent some time at Cyprus Lake. Shopped. Drove around seeing who could find the best adventure ... Glen spotted a bear (in the distance on the outscurts of bush), I spotted a bear running down the road in front of us .. looked like a dog at first, Glen spotted a rattlesnake on the side of the road, pretty neat - you could hear his rattle, I spotted a groundhog, Gary spotted an inchworm ... and so on and so on .. you get the picture? Gary & Shiela have been so wonderful for our family and have stood right by our sides through everything, it was soooooo nice to be together and have nothing but "fun" to worry about. Thanks guys!!
And now the meeting. The bottom line (& simplest way to explain), is that the doc in Toronto presented Austin's case to the bone marrow transplant board. The "board" has labelled Austin as having "progressive" disease. Their conclusion comes from the fact that Austin's bone marrow that was once negative is positive again. They feel that Austin has become chemo resistant, and that any further chemo wouldn't help. If we continue, or wish to proceed with the transplant, he would consider it to be compassionate therapy. His other alternative when asked, was to put Austin on palliative care. (Stop treatment and manage the disease as long as and as pain free as possible).
I strongly disagreed with the label "progressive" disease, I totally refused to listen to such nonsense. Austin has responded to chemo slowly but steadily. There has never been any indication that it hasn't. There is no medical or scientific proof showing that the disease in his marrow has or ever was worse. If anything, it's getting harder to find, and the latest biopsy showed minimal tumor. I believe that the pos/neg results are because of the sampling (tests) and nothing more. You can imagine that the bone marrow is like a lake, you put your fishing pole in and pull it back out. Just because you didn't catch a fish, doesn't mean that the lake is clean of them. Same with bone marrow. His tests so far since Nov. have been pos, neg, neg, pos, neg, pos. So it seems pretty clear that the disease isn't coming and going, it's a matter of showing up or not.
As you can imagine, this has thrown Glen and I off our game a bit. (only for a brief timeout). When we went to McMaster the next day to report back what had been said in Toronto, the docs in Hamilton are backing Austin up 100%. They totally disagree with Toronto's prognosis. They feel Austin is doing good, and they feel they are winning with his disease. We are soooooo close to being in remission. They are not ready to give up, and by no means, either are we.
A plan is somewhat in place. We will continue giving Austin his next round of chemo, and will re-evaluate. If his bone marrow comes back negative, we will proceed to transplant. Toronto will call it compassionate therapy, let them. We believe it will help. If it comes back positive, we have some decisions to make ... we'll deal with it then, in the mean time, phone calls are being made, and meetings taking place. There are other forms of treatment available that can help Austin if need be.
Prayers are always helpful, sympathy is not necessary. Please don't let this sadden you, it was only one hospital's opinion ...
If you want to read on ... here is a poem that I received yesterday (thank you Honna)! It couldn't be more appropriate.
It Couldn't Be Done
Somebody said that it couldn't be done,
But he with a chuckle replied
That 'maybe it couldn't," but he would be one
Who wouldn't say so till he'd tried.
So he buckled right in with the trace of a grin
On his face. If he worried he hid it.
He started to sing as he tackled the thing
That couldn't be done, and he did it.
Somebody scoffed: "Oh, you'll never do that
At least no one ever has done it";
But he took off his coat and he took off his hat,
And the first thing we knew he'd begun it.
With a lift of his chin and a bit of a grin,
Without any doubting or quiddit,
He started to sing as he tackled the thing
That couldn't be done, and he did it.
There are thousands to tell you it cannot be done,
There are thousands to prophesy failure'
There are thousand to point out to you, one by one,
The dangers that wait to assail you.
But just buckle in with a bit of a grin,
Just take off your coat and go to it;
Just start to sing as you tackle the thing
That "cannot be done," and you'll do it.
Edgar A. Guest
Love to everyone,
Beth
Thursday, August 12, 1999 at 09:52 PM (CDT)
I know a lot of you are wondering how it went in Toronto yesterday - It didn't go well, but it was a better day in clinic today.
Austin's platelets are low (18), not low enough to transfuse though. The rest of his counts were good. We will have them done again on Tuesday. As soon as his platelets are at a safe level, he will begin his 11th round of chemo at McMaster. After this round he will have his evaluation done again.
I am taking the weekend off - away from the computer, so I will see you all next week!
Have a good weekend,
Love to everyone
Beth
Monday, August 09, 1999 at 09:45 PM (CDT)
HAPPY BIRTHDAY ART!!!
It's been a few days ... there were some issues that Glen and I have been sorting through that needed to be voiced today in Clinic. We hope they have been resolved, I think our meeting with the social worker & the doc went OK.
Austin's counts were good today. He's on Day 13, and so far a transfusion hasn't been needed. (A first). His platelets are low, but because we haven't had counts since last Wednesday, it's hard to tell if they're still dropping or on the upswing. He will be checked again on Thursday.
Wednesday, we have a meeting with Dr. Calderwood in Toronto. He has presented Austin's case in front of the bone marrow transplant board, and wants to discuss things with us. It's useless to speculate what that would entail, we'll have to see when we get there.
Our weekend was good. Austin was feeling OK, so we accepted our invitation to meet Winnie the Pooh in Niagara Falls. If any of you caught the news on CTV last night, you can imagine how NUTS it was. They estimated 40,000 people were there. We were off to the side and the kids were able to have their picture taken with Pooh in the VIP tent. It was crowded and hot, not the best place for Austin to be ... but he DID get to give Pooh a hug, and Mommy was sure to take LOTS of pictures.
We didn't hang around, it was just TOO crowded, the radio station CHSC made a bag of goodies up for Austin and gave him a floor rug with Pooh on it. Very nice. We left there and made our own adventure. Gary & Shiela spent the day with us, we took the kids on a hike down the Niagara Glen to the river and watched the Whirlpool jets wizz by. Of coarse, the kids had a great time throwing (what else) rocks into the water. We spent the better part of the day there, and then went out for supper. It was a very nice day!!
And that's about it ... I'm off to enjoy some much needed quiet time with Glen, although it's VERY tempting to see what's up on ICQ!!!!
I'll be sure to let you know what happens on Wednesday,
Love to everyone,
Beth
Friday, August 06, 1999 at 05:35 PM (CDT)
Austin's counts on Wednesday were good. Pretty good for Day 8 of his cycle. Usually he needs to be transfused around Day 9 for red blood and Day 12 for platelets.
I was told by the docs not to come back until Monday (Day 13). (I wanted to come in on Friday - Day 10). This has made Glen and I very uncomfortable, but we have no choice, we will wait until Monday. It has been driving us nuts since Wednesday, we are not pleased. I could go on and on - but I won't get started .... the important thing is Austin is feeling well - we will keep a close eye on his behavior as this will be our only way of knowing if his counts are becoming dangerously low.
The kids are taking turns having a sleep over at Nana and Gramps' house. Austin had his Wednesday night ... Amber had her's last night, and Aaron will have his soon.
The West Lincoln Review was here yesterday morning to do an interview about our trip to Disney, it will probably be in next week's paper. For those who missed it: the two articles from last week are in the photo part of the web site.
HAPPY BIRTHDAY (tomorrow) LOUISE!!! Hope we can get together over the weekend.
Hope everyone has a good weekend, I will probably have an update by Sunday. (If all looks well with Austin - we will be taking him to the Pooh festival in Niagara Falls - he's been invited to the VIP tent by CHSC Radio to meet Pooh and all his friends - still haven't told the kids in case we can't make it).
Take care & enjoy your weekend!!
Love Beth
Wednesday, August 04, 1999 at 12:46 AM (CDT)
It's so nice to be home again, Austin is ... (well, do I really need to say it??) doing great. He looks really good, he's not even pale yet, must be the tan. We have clinic today, I will update when we get home. Hopefully I will have some answers about TO.
For all of you who didn't get a chance to see the articles in the paper about our lunch last week, I have put them in the photo section. Check them out ... but be forewarned, it will probably take 5 or 10 minutes to come up.
Love to everyone,
Beth
Sunday, August 01, 1999 at 05:39 PM (CDT)
Can you imagine the surprise on Daddy's face when Mommy and Austin walked around the corner of the house. He was expecting Nana, Aaron and Amber ... but he got the whole gang instead. The doc sprung Austin a day early!! We didn't tell Daddy .. when he called to say he was coming for a visit this afternoon, I told him not to bother, that Aaron and Amber were coming home soon (they were visiting us with Nana), and he had to be home for them. He sounded so disappointed because he missed his little tin man and wanted to see him. SURPRISE!! Joke was on him!
Austin and MOMMY are sooooo glad to be home. He finished his chemo this aft. and we usually stay until the next day so he can get his anti-nausea meds (IV) at midnight and 8 the next morning. They sent us home with two doses of oral ondansetron. We'll see how it goes, and if it goes well we'll only have to be in six days instead of seven. Believe me when I say ... I'LL TAKE IT!!
Right now the kids are running all over the place playing and laughing. They missed each other so much. All day today at the hospital Aaron and Amber took turns hugging and kissing and cuddling Austin. It's a nice sight ... it melts my heart to watch them be so close. (Wish it was like that all the time). Oh, see ... now Aaron's crying ... Austin threw a pirate at him ... now Aaron just hit Amber, now Amber's yelling ... and Aaron's crying again ... my my my, didn't take long did it??? WE'RE HOME!!
We're going to take advantage of our freedom tonight and take the kids to Port Colborne. There is a boat parade along the Welland Canal, and fireworks later tonight. We'll pick a spot away from the crowd, if we can't find one, we'll come home.
Have a good holiday Monday,
Love to everyone,
Beth
TINY UPDATE: We found a great spot, and the fireworks were SPECTACULAR! I am so glad we got to go.
Austin fell asleep on the way home, so I had to wake him up to give him his med. Didn't go so well, we had to pin him down. I hated it, I'd rather stay the extra night. But this morning, he did super and told me he will take his meds two times if it means coming home a day early!
Saturday, July 31, 1999 at 10:14 AM (CDT)
Round 10, Day 4
Things are still going good. Austin is feeling OK, he is still eating and playing around. Last night he felt a bit of nausea, but fell asleep and had a good night. He seems fine this morning. Had a GREAT big bowl of oatmeal.
He's in his room now playing with a girl from Child Life, so Mom thought she would take advantage and get a little break!
Help a Child Smile called the other night, and a radio station that had read the article in The Standard has invited Austin V.I.P. to the Pooh Festival in Niagara Falls next Sunday to meet Winnie and all his friends. Austin will more than likely be neutropenic, so we'll have to see if we can go or not. I haven't told the kids yet, I will tell them when we're sure if we can go, no sense disappointing them. I've seen the commercial for it on CTV, it looks pretty cool!! I hope we can go, the kids would just LOVE it!.
The days and nights are kind of just rolling into another. Soon we'll be out of here and back home, AAAHHHHH!!!
Have a good day!
Love Beth
Thursday, July 29, 1999 at 12:59 PM (CDT)
As usual, Austin is doing good. He just finished his second day of chemo. He's in his room having a rest with Nana watching Chitty Chitty Bang Bang (for the fifth time).
It's been pretty quiet around here. Austin and I are just hanging out. He enjoys his visits from friends so much. Gary & Shiela came up for a visit last night, they always perk him up!! Shiela bought Navada tickets for Austin to pull (one of his favorite things to do in the Hosp), and he won "fifty bucks". He bought himself a cream soda, and when I asked him for a coffee, he said "No way, I don't want to waste ALL of my money". Hmmm.
It sounds like the docs are working on a plan. They've spoke to Toronto, and have to discuss the radiation part with Henderson. Hopefully before we leave they'll have a plan in mind.
That's about it, two down, three to go.
Will "talk" to you again soon,
Love to everyone,
Beth
Tuesday, July 27, 1999 at 06:48 PM (CDT)
We're back from lunch, and we're on our way out to the Hospital.
Just wanted to let everyone know that we had a really nice day. Minnie Mouse presented Austin with his package. Look for his story in The Welland Tribune and/or the St. Catharines Standard.
Help a Child Smile put on a great lunch / presentation and a big thank you to Crabby Joe's for treating the Austin "groupies" to lunch!!
Well we're off, kind of dragging our tails behind us. Will keep you updated when I can.
Love to everyone,
Beth
Monday, July 26, 1999 at 05:07 PM (CDT)
All is going well, we had a nice weekend. Austin is feeling good, his side is a little sore, I think his muscles are feeling the stress of surgery now. It probably doesn't help that he has been NON STOP since he's been home. His body must be telling him enough is enough, and giving him no choice but to slow down.
We took the kids to Port Dahlousie last night for supper, and then took them out to the beach (at 10p.m.), so we had the whole place to ourselves. The water was soooooo warm, and there were some pretty good waves. Needless to say, they thought it was pretty cool!
Clinic was so busy today. His counts were pretty good. His platelets come up to 227, and his hemoglobin 120. His white count is on the low side though, so I don't think it will take much chemo to knock him right down.
Tomorrow is the big day!! Austin will be presented his trip to Disneyworld. There will be reporters there, so I've been told, so I'll be sure to let you know what paper (I imagine The Spec??). They want to do an interview.
We'll be going in tomorrow night for five days of chemo. We will be home again next Monday (August, can you believe it??). The doc checked out Austin, said he looked terrific. I spoke to him a bit ... from what he understands, there is residual disease in the marrow, and the rest is gone, or calcified. So ALL we need to do is get that marrow cleaned up. He will call Toronto to see how they feel about where Austin's at right now, and what/when to do about a rescue.
Will let you know how lunch went as soon as we get back, we'll be leaving shortly after for the hosp.
Take care,
Love Beth
Friday, July 23, 1999 at 10:13 PM (CDT)
The bone marrow biopsy detected small amounts of neuroblastoma in Austin's marrow. It didn't show up on the aspirate, and when they did tests on the biopsy, it came back suspicious. Only when they did a special NB stain, did it come back showing NB cells.
So, what does this all mean?? It means that Austin will continue the chemo he has been on until his marrow is clean.
It also means that these little nasty buggers are getting harder to find, and that is good news to me. Yes, it's discouraging when I let myself wander off into space for a moment, but then I hyperspeed back to reality, and I think about how excellent Austin looks and feels. I think about what was in his little body last November, and look what has been accomplished. He only has traces of these tiny cells left, and their party will be over soon!! You can bet on that, Austin knows what his job is now, and rest assured he knows exactly how to do it right!!!
Since November, we've been telling Austin that we're trying to get rid of the lump in his belly. Last week, I had to find a way to tell him he had one in his chest. Each time, he totally understands, and knows just exactly what needs to be done. I didn't quite know how to go about telling him that even though his lumps were gone, he still needed medicine, tubes, hosp., etc. etc. Well, today I had my talk with Austin and he totally understands (in his three year old way, and using analogies (?? is that the word)) and he knows now what has to be done! so by God, he's going to do it!
He will be admitted Tues night, and start his chemo on Wed. for five days.
Have a good night,
Love to everybody,
Beth
Thursday, July 22, 1999 at 11:40 AM (CDT)
The pathology report for Austin's surgery came back. It showed that part of the tumor had matured, (this is good), but it also showed there were pockets of neuroblastoma cells. The tumor was removed wholly and intact.
The bone marrow biopsy shows suspicious cells, so they are doing further tests, and I will be told sometime today or tomorrow. If the marrow comes back with NB cells, the doc suggests doing another round of chemo at Mac. If not, they are thinking we should move on to radiation. I will know tomorrow.
Austin is feeling good. Although he won't give into it, I think he's pooping out. He needs a good nap, but he just won't stop for a second to have one.
We're off to Mac this afternoon. At one appt. a while ago, one of the docs commented on Austin's "lazy" eye, something that has never been brought to my attention before. We have an appt to get it checked out, so I'll see what they have to say.
Will let you know as soon as I know more.
Love to everyone,
Beth
Monday, July 19, 1999 at 01:14 PM (CDT)
I think I'd need to be a commentator to keep up with Austin and what he's been up to. Eating, running full speed ahead, climbing upstairs, back downstairs, running up hills, racing down hallways, climbing walls, eating some more, jumping to hang off raftors (10 ft up in the air), running some more, boy oh boy, all day long, he just didn't stop. Not once, all the while with the biggest, bestest smile on his sweet little face. Whoosh there he goes, the docs and nurses and people who know him just shook their heads in amazement!!
The chest xray came back excellent. Dr. Fitzgerald said it couldn't have been better. So we were told to go home and enjoy ... so here we are ... HOME!
As Austin was leaving he said "That was sooo fun at the hospital."
So I'm off, to enjoy home once again. What's next you ask? Haven't a clue I say. I'm going to TRY not to worry about it for at least a day or two! (HA!)
Love to everyone,
Beth
LATE BREAKING NEWS: We just received a phone call from the Help A Child Smile Foundation. Next Tuesday Austin is going to be presented with a trip to DISNEYWORLD!!! Stayed tuned for details!!
Sunday, July 18, 1999 at 12:33 PM (CDT)
Things are going VERY good. Austin had a great nap yesterday, woke up at 6:00. Played until 11:00 and went to sleep for the night. He had a good sleep.
The surgeon residents came in to see how he was doing this morning, I think they knew as they watched Austin placing his order on the phone for some Honey Nut Cheerios.
So the IV is out, Austin is tubeless and running around like nothing has happened. He keeps telling us how he needs to exercise, and boy is he ever. I couldn't believe when I looked outside the playroom, and him and Nana were kicking the soccer ball to each other. He doesn't seem to be in any pain, he's not taking anything for pain. He TOLD me that his back hurts, but he sure isn't SHOWING it.
The doc wants him to have his chest xray tomorrow morning, and if all is clear, we can go home. The are all amazed at how well his recovery is going! They were actually prepared for us in step down ICU, boy did he fool them!
As you can imagine, we are soooo proud of our little peanut. What's even better, is he's soooo proud of himself. His LUMPS ARE GONE!!! and he knows it!
Thank you again for all your well wishes and prayers,
Love the Davis'
NOTE to our funny bunny in the castle: Along with his usual companion to the OR (Sam the Snake), yesterday he insisted on taking his new friends: Bunny, Bunny and Ducky. He just adores them (and so do I).
Thank you!
Saturday, July 17, 1999 at 11:53 AM (CDT)
UNBELIEVABLE!!! is all I can say!
Three Cheers for Sam the Snake. He was pretty hungry this morning, and boy did he have his feast, and fast too!
8:30 a.m. Austin's surgery started
8:30 - 10:30 Sam the Snake devoured the whole entire lump, got every last crumb (so we hope)!!!
10:29 Surgeon removed two slivers from Austin's foot (said that was almost tougher than removing the tumor).
10:30 Dr. Pai did a bone marrow aps/biopsy
10:30 Dr. Fitzgerald came to tell us he was done for the day, he looked very pleased and said it went very well.
11:00 Mommy & Daddy got to go be with Austin in recovery
11:05 Austin stood up and used the potty!
11:45 Austin's back in his room.
12:00 Austin chows down a bowl of chicken noodle soup (making obsene noises slurping) (he thinks he's funny!)
12:30 Austin called Nana to say Hi!
1:00 Austin is having a little nap.
So, everything is great. For the next couple of days we'll just watch to see if the fluid around his lungs drain themselves. If not, he'll need a chest tube. He will have a chest xray on Monday, and if everything is fine, SO IS HE!!
Will update again later,
Love to everyone!!!!
Beth
Friday, July 16, 1999 at 02:45 PM (CDT)
Hi everybody,
I'm so glad I got through, I've been trying all day to give an update before we left. Austin & I are leaving for the hospital soon.
Everything is a go, I spoke with the surgeon yesterday, so the operation is set for 8 a.m. Saturday morning. The tumor he is having removed is behind his left lung. He will try to remove it using scopes, leaving three small incisions. If he can't he will have to make an incision between the ribs, which I imagine will be a bit more complicated. He said he expects Austin to be in pain for a day or two, he will wake up with a tube to drain fluid from the (incision, lungs?? can't remember), which might be a bit uncomfortable. So, given that ... I still don't know what to expect when it's over. He also said that he will be making sure he gets ALL of the tumor, unlike the abdomen, where he was allowed to leave some. Now, it's too bad he can't get rid of the butterflies in Mommy's belly!! (I'm not in real fine shape today, I can't wait for this to be over).
So off we go, I will try to update all as soon as I can. Thank you all for your thoughts and prayers ... keep them coming!!
Love Beth
P.S. Bunny & Liz: I have the package for Austin, I will give it to him when we get to the hospital. Thank you so much!
Brenda C.: Sorry I missed you this aft! Hope to see you next week.
Brian TUC: Double double?? Sure!
Dave: Happy Birthday!!!
Mom: Thank you for being the best mom in the world. I don't always show it, but I love you. Everything will be fine ... thanks for being there for me and my kids (and hubby too!), you're the best!
Wednesday, July 14, 1999 at 10:04 PM (CDT)
FINALLY ... got a phone call from the surgeon tonight. He asked how Saturday morning 8 a.m. sounded? He just has to confirm this tomorrow with his office, as a Sat. operation is usually booked on a Friday. Something like that anyway. He will call back tomorrow and let me know for sure. Until then,
Love to everyone,
Beth
Tuesday, July 13, 1999 at 11:02 PM (CDT)
Clinic went well today, nothing major to report. His counts are excellent, so we're going to stop the neupogen and redo his counts on Friday. Still no word from the docs, other than he had spoke to the surgeon this morning, and they're still waiting to squeeze us in. More than likely, we'll be into the weekend for sure. Everyone that bumped into Austin today couldn't get over how excellent he looked, I could see it in their eyes ... AUSTIN IS WONDERFUL!
This morning Austin woke up with one eye closed. Yes, he caught Amber's pink eye. We started the drops today. The first ones didn't go that great, but thanks to all the coaching from big bro and sis, and the BIG BIG talk from Brenda this aft., he's an old pro already. Brenda, you would have laughed .. when we got home we did the drops right away, he opened his eyes BIG and WIDE, got the drops, got up and said "Now there, that wasn't SO bad!" He continues to amaze me every day!!!
Just a small note to those of you that might be talking to Austin: "Operation Yucky" is something that I say to you out of fun. PLEASE do not refer to the phrase "Operation Yucky" in front of Austin, as I really really try to stay very positive about everything he has to endure. I would never want him to think an operation is "Yucky". This morning I started to talk to him a little bit about it ... he really didn't know that he had a tumor in his chest, we really only talk about the "lump" in his belly. I will add a little to the story everyday, at his own pace, and when the timing is JUST right, that way he gets a pretty good picture of what will be happening, which I believe is his strength! Anyway, thanks in advance for your discretion!!!
Love to everyone,
Beth
Monday, July 12, 1999 at 11:08 PM (CDT)
Well, still no news on when "Operation Yucky" takes place, so for now we'll concentrate of "Operation Fun". Spoke to the surgeon's secretary this morning and she confirmed that Austin is on the waiting list for sometime this week. She will call me when something comes up.
The kid's exciting news for the day: A friend of ours came over and took them all for a spin on his dirt bike. They all took turns driving, they were pretty pumped up as they were all "going super fast". Austin did a pretty cool pop-a-wheely that he's pretty proud of!
We have clinic in the morning, so hopefully find out more about a date.
CHECK OUT THE NEW PICS!!
Love to everyone,
Beth
Sunday, July 11, 1999 at 10:18 AM (CDT)
Hello all!
Yesterday we took the kids to Wonderland, thanks to "Help a Child Smile". It was a very nice day. It was nice to see familiar faces outside of the hospital and having some fun!! It was great to see the kids having so much fun. Aaron and Amber both loved the roller coaster. Austin loved the bumper cars. He really liked it there, we didn't realize how much until we were leaving. Austin BAWLED all the way from the gates to the van, and over and over again kept saying "I don't want to go, I want to stay here. He wanted to stay sooooo bad, he was almost making me cry, I wish we could've stayed forever!! Needless to say, we promised him we'd go back someday.
It's too bad we didn't have tickets to go today, because the men of GH are there today. TOO bad!! (It would've been me that Glen was dragging out of the park!!)
Don't know what's in store for today, but I'm sure we'll think of something!
Have a good one,
Love Beth
Friday, July 09, 1999 at 11:30 AM (CDT)
Well operation fun continues (before we get to operation yucky)!
Yesterday we went out for the day with Uncle Rob & Aunt Lucy to St. Williams (near Port Dover) to his dad's trailer and spent a couple of hours out on his boat. The kids just loved it, I only remember Austin laughing so hard one other time (Calvin's magician at Aaron's birthday party). He was having a great time with all the waves and bumps (I don't think Aunt Lucy & Aaron liked it very much though!!). I don't know who liked it more, Austin or Daddy; it was a great day for everybody, THANKS UNCLE JOE!!
The Davis' are getting to be old pros at giving Neupogen shots now. Yesterday Austin elected Aaron to be his official "rubber". Aaron did an excellent job to help out, I was very proud of both of them!!
We're spending a nice quiet (??) day at home today. The kids have Mike and Chris here to play with - we're getting rested up for tomorrow.
Austin still has a bit of a cough, and today he woke up with a stuffy nose. Let's all hope this goes away soon!
Talk to you soon,
Love Beth
Wednesday, July 07, 1999 at 10:52 PM (CDT)
Wednesday already, time sure is flying by.
Let's see, yesterday we went to the Clinic. Austin's counts have come right up. His white count was 22 (twenty two). (Normal is around 6-10). The neupogen is definetly doing it's job. We would usually stop at 15, but the doc wants us to stay on it until surgery. The last thing he wants is Austin's counts coming down and the surgery cancelled, so our thoughts of having a week free and clear of daily nurse visits was blown away. Until of coarse we came home, and Austin ACTUALLY let Mommy give his neupogen needle! So we did it again ourselves today. Frees up our day totally, we won't have to wait for a nurse when we have plans, which today we did.
We took the kids to Marineland today. All Austin has talked about is petting the whales. Well, we tried (and tried), but no luck. Oh well, he had a great time anyway. We all had a good time. I think I almost went the whole day without thinking about hospitals and cancer. (Of course, here I am, talking about it now). Hopefully a couple of the pictures turn out and I'll post them soon.
Still no date for surgery ... sometime next week is all I get. Possibly not until the week after, which I hope is NOT the case. (Here we go again?). We are booked to go back to Clinic next Tuesday, maybe they'll know by then???
That's it for today, have a good day!
Love to everyone,
Beth
Monday, July 05, 1999 at 06:45 PM (CDT)
WELL, how's everyone holding up in this heat??? Michelle, I can honestly say I just have to close my eyes and imagine that I'm right there in Florida with you!!
Hope everyone had a nice long weekend, and our US friends had a happy 4th of July!! We've been busy taking advantage of every spare minute we have home together, it's been so nice.
Just a short story to share, some might appreciate it more than others. I had to take Amber to the docs today, she has pink eye. When I went to pick up the prescription, the pharmacist told me that the eyedrops might sting abit, she eyed Amber and commented that it might not be so bad at her age, but she wouldn't want to have to do it to a toddler. She didn't think a three year old would be to keen on having drops in their eyes, or understand why they had to. (Her words, exactly). My mind was racing, should I tell her what MY three year old is capable of understanding? Should I tell her MY three year old would only be so lucky to need eyedrops in his eyes? I opted out of blurting to the whole store that MY three year old has cancer, instead just told her she would be amazed what a three year old is capable of understanding! 'Nuff said!
Clinic tomorrow, I will update you then.
Have a good night,
Love to everyone,
Beth
Saturday, July 03, 1999 at 02:18 PM (CDT)
Well, nothing much to report, so I guess that's good news in itself.
Life around the Davis house has once again gotten back to some sort of normal routine. We will enjoy it while we can!!
Austin is feeling well, has a bit of a chest cold which has me a little concerned. I paged the doc last night, and he thinks it's just a "normal childhood cold", and to treat it as one. As long as he stays active and doesn't present a fever, no need to worry. Something kind of strange is happening though, Austin's hair is coming in. All of his eyelashes are back, his eyebrows are definite and peach fuzz has sprouted. Can't understand why, it hasn't happened before (besides the time he went 7 weeks without chemo). I'll have to see what they have to say in clinic on Tues. I'll enjoy it while it lasts though, it will be at least 3-4 before his next chemo!
We got out to see fireworks on Canada Day. The kids loved it (so did I!)
That's about it for now, I probably won't update until Tuesday, so have a good weekend and thanks to everyone for checking in, it helps to know people care!!!
Love to everyone,
Beth
Wednesday, June 30, 1999 at 02:02 PM (CDT)
Got word yesterday that Austin's surgery will be booked in two weeks. That takes us in around the 13th of July. That gives us TWO WHOLE WEEKS of good counts before he goes in. Hopefully we can get in some "fun stuff" before then. Any suggestions???
Sounds like I've confused alot of people, so just to let everyone know, Austin's surgery will be done at McMaster. He won't be going to Toronto until at least September as far as I know.
Hope everyone has a good day tomorrow,
HAPPY CANADA DAY!!!
Love Beth
Tuesday, June 29, 1999 at 11:26 AM (CDT)
Austin's counts are on their way up. This is good! Still no date for surgery, I was hoping to have some idea by now. I guess they're waiting for his counts (platelets) to come up enough before they let the surgeon know that he's ready, then they'll squeeze him in. I hope that's all it is, I really want to have it done AS SOON as he's ready. Since Thurs. is a holiday, and the clinic's closed on Fri., we don't have to go back to clinic until Tuesday. That gives us SIX WHOLE DAYS at home without any trips to McMaster. YIPPEE!!!!
Today is the first day home for Aaron and Amber. Austin was pretty excited to bring them with us to clinic today. They both really did well in school considering everything that has happened. They both had excellent report cards, and are on their way to Grade 2 and 1. Amber's already telling me she hates homework so she doesn't want Sept. to come. Oh boy! Austin would be going to JK in Sept., it's so hard because we've always told him "when you're 4 you'll go". The school is holding a spot for him so maybe in the spring he will be able to go a couple days a week. We'll have to see?
Well for those who know the story, I'm going to do some more laundry (UGH). Have a great day,
Love to everyone,
Beth
Sunday, June 27, 1999 at 10:49 AM (CDT)
Well I finally got a minute to sit and get caught up on my computer stuff. It's been a crazy few days around our house.
Austin looks and feels a lot better this morning. We got his counts done yesterday morning, and his platelets were 12. They paged the resident on call, and he got us up to the ward for the transfusion, and told me not to worry, he wouldn't send us to Emergency (Thank you doc). It's a big problem for our oncology kids, Emergency just doesn't treat them the way they should. Just Friday night, one of our kids had to get the chicken pox needles because he was down in ER and someone there had chicken pox. Something has to be changed so that our kids can go straight to the ward and bypass the ER altogether.
Anyway, the bruises have already started to fade away, his legs were covered. Hopefully we're on our way to a good week next week and get some visiting in. He's still neutrapenic, so as soon as his white counts come up we're free and clear.
Have a good day,
Love Beth
P.S. Sorry I missed your birthday Arne, HAPPY HAPPY (?0th) BIRTHDAY!!! Hope you had a good lunch on Friday.
Thursday, June 24, 1999 at 03:49 PM (CDT)
I think Austin pooped out a little yesterday. He was pretty tired most of the afternoon, although he perked up a bit after supper.
We had clinic today. His hemoglobin was low (as expected), and he needed a transfusion. He kind of dragged himself in there, and when we left he was skipping and jumping down the hall to get back to the van. He fell asleep on the way home, and now Glen had to do some running around, so we left him sleeping. He'll be pretty confused when he wakes up seeing Daddy driving and not Mommy. Hope when he gets back he's feeling as good as new again!
His platelets weren't low enough for a transfusion today, but will be so we have to go to the lab on Saturday morning and more than likely have the transfusion in Emergency, something we haven't experienced yet but by the sounds of it, I'm dreading.
And tonight we're getting ready for Miss Amber Lynn's big birthday party tomorrow. She'll be six, and she's sooo excited. She has friends from school coming and a few other friends. Austin will have to pass on the party, him and Daddy are going to hang out somewhere else for a few hours, I feel bad about that.
Still no news on a date for surgery, although the doc mentioned today the plan sounds like this: surgery, one more round of chemo, radiation then rescue. He has been put on the rush (?) waiting list for Toronto.
That's about it for now,
Love to everyone,
Beth
Tuesday, June 22, 1999 at 02:31 PM (CDT)
Home Sweet Home!
We're finally home after Austin's 9th round of chemo. Six days seemed like forever. Everything went very smooth again, Austin was his silly old self through much of the week. He spiked a fever on the third night, but like last time didn't amount to anything more.
We had clinic this morning, his counts were all good. He has his next clinic day on Thursday.
The surgical resident was in to see us yesterday, so I'm waiting to hear back from the surgeon regarding our next step. Will let you know.
I'll be going now to enjoy what's left of my day, hope everyone is doing good,
Love Beth
Tuesday, June 15, 1999 at 03:31 PM (CDT)
ARE YOU ALL SITTING DOWN??????
Austin's bone marrow is CLEAN!!!!!!! YES! Thank you God!! Thank you everybody for all of your prayers, he's listening!
The slide and biopsy came back negative. They still have a couple tests (stains) to do on the biopsy, but the news is GOOD! The scans showed the tumor in the chest to have shrunk considerably, and the tumor in the abdomen looks good too! No new uptake, so this is EXCELLENT!!! Things are still doing what they are supposed to be doing.
Austin's hemoglobin was 107 today, the highest it's been since all of this began. He's bouncing off the walls, he doesn't know what to do with all of this energy. His white count was 24 today, so the germs are bouncing off him!
So the docs are going to book his surgery to remove the tumor in his chest. In the meantime, we are being admitted tonight to start another round (5 days) of chemo. This time, it is to MAINTAIN where we're at until everything is organized. We will do surgery when he recovers from this chemo (approx. 21 days), and plans are being made to go to transplant in Toronto. The doc believes they won't be ready for Austin until Sept., so in the meantime, we will continue the chemo so he's good and ready. Radiation will be discussed with Toronto to find out if it will be necessary or not, our doc didn't want to speculate until they spoke to TO.
So I should get going, got lots of packing to do, and have to prepare Aaron and Amber. I will be missing some things that were planned this week... a school trip tomorrow, Ontario Place Saturday night and the circus on Sunday, hopefully the kids will understand.
And to boot, Christa is coming home today from her second rescue. WELCOME HOME guys!!! Will talk to you soon,
Love to everyone,
Beth
Monday, June 14, 1999 at 03:49 PM (CDT)
Well, no news is good news I hope. Haven't heard from anyone today, so we will go to Clinic tomorrow to find out all of the test results. Glen will be coming with us tomorrow, so we can celebrate together when we hear all the good news (LOL)!!
Austin looks incredible. He looks and feels the best he has in a LONG time. He actually has color in his cheeks. He felt so good on the weekend that we treated him royally, and took advantage of his wellness. We took him to Rochester, N.Y. to see his Grampie and Bonnie on Saturday. I haven't felt comfortable enough to go outside of the country since November, but this weekend how could I say no. The kids were so excited to be going.
Austin is at Nana & Gramps' right now visiting. He called her and asked if she could pick him up, and asked if he could have supper there because he didn't like what Mommy was making. The nerve!!
Please say an extra prayer for Austin (& his family) tonight that tomorrow might be the day we've all been wishing for. TIA.
Love to everyone,
Beth
Thursday, June 10, 1999 at 01:23 PM (CDT)
FRIDAY UPDATE: No news today. Thanks TUC for getting me out today, it was good to see you all again. Hope everyone has a good weekend!!
THURSDAY:
Just as I thought, who knows Austin better than I do! His platelets came up to 61 today, (I told them they would), so we went ahead with the bone marrow aspiration / biopsy. Everything went smooth, he was such a good boy this morning not being able to eat / drink until after his test. He was even given a piece of cake in the clinic from a little girl who was coming off treatment, so he told her he would have to wait until he woke up to eat it, and boy did he wolf it down when he was able to!!
So now we wait .... Tuesday is clinic day, we will hear all the results, and go on from there. Hopefully the weekend flies by really fast, I hate waiting. The docs will call sooner if they know for sure he has to continue chemo, if not - they have to wait for the pathology report on the biopsy, which won't be until Monday -- so let's hope and pray that we don't hear from anybody until Tuesday!!!!!
Austin is visiting with Nana and Gramps now, so I'm off to enjoy an hour to myself.
Love to everyone,
Beth
Tuesday, June 08, 1999 at 04:47 PM (CDT)
Well our day didn't go quite as we planned. Austin's platelets were too low, so we had to postpone the bone marrow aspirate/biopsy. I told them I'd bring him back Thurs. for counts. They thought more like next Tues. So we'll see, if they're not 50 by Thurs., we'll do it next Tues. (Today = 31).
His white count and hemoglobin were pretty good today.
Since we were done so early at the clinic, I took my peanut and Nana to the beach. They had fun throwing rocks in the water, while I took a needed rest in the sun, lazin'! I think I need to give my brain a rest, it's not working so great ... I say stupid things and I don't know where they come from, like this morning, I was looking at a tree, and was getting Austin in the van ... so I said to him "Come on Austin, get in the tree". What's that all about???? It's not the first time. The other day, Amber was coming out of the bathroom to go outside, I was going to put suntan lotion on her, so I said "Come here Amber, I have to put toilet paper on you". Can you believe it?? LOL I think I'm losing it!
Love to everyone,
Beth
Monday, June 07, 1999 at 09:14 PM (CDT)
"Yesterday's the past, tomorrow's the future, but today is a GIFT. That's why it's called the present."
Had a good day, went to clinic for counts, good news, they're starting to come up. Last week when he had "NO counts", we made up a game that he must have lost them somewhere. Maybe they're under his bed. He'll have to get lots of sleep, and maybe we'll find them. Well today, he played right along, and was saying he found his counts, they were under his bed all this time. He even told me "good thing they didn't get lost for too long". I couldn't agree more!!
Anyway, we were so excited about his counts being "counts to go visit with" that we headed right over to his best buddy's (Dustin's) house (that he hasn't seen for what seems like forever, we were waiting for the chicken pox to evacuate their house). Austin truly believes that they ate too much chicken, and that's how they got the chicken pox. It felt so good to get them together!
And tonight, Mommy got to spend some time with Aaron at soccer and Aunt Louise's baseball game. It was so-o-o nice to hang out with him, just the two of us.
Tomorrow is Austin's bone marrow aspiration / biopsy. He didn't sound thrilled when I told him - he said "not another operation?". I explained to him that no, it's not an operation, but you will need sleepy medicine, they're going to check the blood that's made inside your bones, and when you wake up you'll have bandaids on your butt. Then we can come home. You know what he said? "oh, okay", and ran off to continue playing with Aaron. Amazing!!
Have a good (enjoy the heat) kind of day!
Love to everyone,
Beth
Saturday, June 05, 1999 at 10:10 PM (CDT)
So sorry to have went on and on about our day on Thurs. I guess I was a little pumped up when I got home from Amber's revue! Oh well; next time I'll try not to be so dramatic!!
Yesterday was a bit slower paced. We stayed home and "played" busy! The kids spent some time with Nana after school while I did some running around.
I failed to mention that on Thurs. Austin's white count was still 0.1, so for the weekend at least, it's home sweet home for our little peanut.
Today I got to spend some much needed time with Amber. After taking her to jazz, we went shopping, and went for a drive back to the hosp. to pick up the prescription I forgot the other day (got there and the pharmacy was closed, oops!). We spent the rest of the aft./eve. celebrating Kelly's (Austin's cousin's) birthday. Austin went to visit Nana and Gramps and had lots of fun with them. Tonight the kids are entertaining their cousin Christopher for a sleepover, so the boys will be sure to have a busy morning.
And now, I am going to spend some much needed time with my honey. Have a good night!
Love to everyone,
Beth
P.S. Glad you're day was a little better today Christa. Sweet dreams!
Thursday, June 03, 1999 at 10:04 PM (CDT)
Whew, what a day. I thought I was going to be running the 100 yard dash, but it turned out to be more like a marathon.
Running around like a mad woman this morning, got the kids off to school, and just as fast, hopped in the van to Mac. Got our fingerpoke, went up to the clinic. Got his counts - platelets are 10, needs a transfusion. (By now, it's 10:00), but wait, he has to be downstairs for a CT Scan at 11:15. No problem, ran downstairs - grabbed his platelets and his contrast that he is supposed to drink and brought it back upstairs. Needs platelets, therefore, needs benadryl. Look at my watch, faithfully (every time), 10 minutes after getting it, he's out like a light. But wait, he needs tylenol too. Ever try to wake a kid up to give him tylenol?? It's not easy. Oh oh, he has to drink his contrast before 12:15. Oh well, drink what we can, keep nudging him and saying "here, drink a little more" (by the way, the stuff tastes horrible). OK, platelets are done, he's awake, run downstairs for CT Scan. It went very smooth. The radiologist told me (I'll toot my own horn), how important the attitude of the parents are, and what an effect it has on the kids going through everything. He thought Austin was pretty terrific. Now we have to go for skeletel survey (xrays). I guess he's becoming a pro at these things, now he's decided he doesn't need anyone's help, so patiently we waited for him to position himself just so for each xray, hop up and down off the table, and in between stop to giggle at all the silly things he was doing. OK, xrays are done - now we have to deaccess him, but, he's already 15 minutes late for Nuclear Medicine. Not to worry, we've called them to let them know that we'll be quick. Not so quick when Austin insists on cleaning his tubes himself (as well as the IV pole), then helping to do the flush. Luckily, he's such a ham, that the nurses don't mind having him around a little longer than need be.
OK, off to nuclear medicine for his biggy pictures. Seven - ten minute scans in a row. Again, luckily Cheryl in Nuc. Med. was so terrific, she gave him a little break before we started, and had a Coca Cola waiting for him as she promised she would on Tues. Scans went great, he's so terrific - I'm very proud of him and what he's capable of doing when he knows what needs to be done. OK, out of the hospital and home at 5:40. Shoot, forgot to pick up his prescription - oh well, I'll get it tomorrow.
Exchange of kids, home long enough to kiss the boys goodbye and off I go again with Amber and Nana to her dance revue. Thanks to Nana dressing her in the van, we made it in time to slap her makeup on, do her hair ... and finally sit down to watch a 3 hr. dance recital. Amber's routine was just adorable - she was excellent!! I'm so proud of her tonight too. Got her home at 11p.m. to get her to bed in time to wake up for school in 8 hrs.
And that was our day, how was your's?
Until tomorrow,
Love Beth
P.S. Happy Birthday Kelly!!
Tuesday, June 01, 1999 at 09:02 PM (CDT)
"Happiness isn't about what happens to us -- it's about how we perceive what happens to us. It's the knack of finding a positive for every negative, and viewing a setback as a challenge. If we can just stop wishing for what we don't have, and start enjoying what we do have, our lives can be richer, more fulfilled -- and happier. The time to be happy is now."
Sounds so easy doesn't it?
Today went well. Austin had his bone scan done today. He was fantastic through it. He asked if this is the really long one, so I told him no, that is on Thursday .. this is just for practise. The scans take about 2-3 minutes each. He had about ten of them done, each one having to lay completely still. No problem, the MIBG scan on Thursday will be seven scans, ten minutes each. He was so funny, being so silly while he was having them done. When he was finally done he hopped off the table and wanted to play a trick on the tech. and go hide on her. He makes it easy to have lots of fun no matter what the situation.
So a day off tomorrow for Austin, and back for a busy day on Thursday for his CT Scan, xrays and MIBG, and I suspect probably a transfusion.
Have a good day,
Love to everyone,
Beth
Monday, May 31, 1999 at 05:01 PM (CDT)
"What lies behind us and what lies before us are small matter compared to what lies within us."
Hope everyone enjoyed the great weather this weekend. The kids spent alot of time outside and have the mosquito bites to prove it. It was certainly nice to be home again, Austin doesn't waste any time getting into the swing of being here. He's been feeling good, to look at him you wouldn't think anything is wrong (except for all the welts on his bald little head from the mosquito bites).
Today we had our check up at the clinic. His neutrophils are 0. You can't get much lower than that. He's been telling everyone today that he's "got NO counts". His hemoglobin was low, he needed a transfusion. His platelets are hanging in at 41. Can bet on a transfusion by Thursday. He amazes me in the way he carries himself around, most of us would be cemented to the couch with counts like that. It doesn't even fizz on him.
Well tomorrow we start the evaluation. Bone scans are booked for the morning. This, as it sounds, will check for any tumors on the skeleten. He will also be injected with radioactive something or other for his MIBG scan that he is having on Thursday.
So we'll let you know how things go tomorrow.
Have a good night,
Love to everyone,
Beth
Saturday, May 29, 1999 at 04:48 PM (CDT)
WHAT CANCER CANNOT DO
Cancer is so limited --
It cannot cripple love
It cannot shatter hope
It cannot corrode faith
It cannot destroy peace
It cannot kill friendship
It cannot suppress memories
It cannot silence courage
It cannot invade the soul
It cannot steal eternal life
It cannot conquer the spirit
Source unknown
HOME SWEET HOME!!
Well back into the swing of being home. We've spent the day gardening and picking up around the house .. an endless job, but oh well, at least we're home!
Austin is feeling really good, and looks great too. He got through yet another one, so far so good. He goes back to clinic on Monday to check his counts, by then they should be dropping pretty good. His hemoglobin and platelets have been good, his white count was 0.6 on Thursday, probably neutropenic by now.
Next week is a pretty busy week, we'll spend most of it at Mac doing scans and tests. Of coarse, I'll let you know as soon as we find out the results. Cross all of your fingers and toes, and please please say an extra prayer for him! I just want this to be over.
Amber is busy practising her jazz, her recital (first one) is this week. She will be dancing to Itsy Bitsy Teeny Weeny. They have the cutest yellow bakini costumes, I'll try to put up the picture when we get them.
Well, back to the house work - hope everyone has a great weekend.
Love to everybody,
Beth
Thursday, May 27, 1999 at 12:59 PM (CDT)
Round 8, Day 5 is finished!
Everything is good, we should be on our way home tomorrow. He perked up a bit last night and had a good sleep. His temp. went down to normal sometime through the night. His appetite isn't the greatest, but that always gets better when he's home.
He's had lots of visitors this time around, thank you for thinking of us ... it makes time go by so much faster.
So hopefully I'll be updating you from home tomorrow, see you all then.
Love to everyone,
Beth
Wednesday, May 26, 1999 at 12:17 PM (CDT)
Hello again,
Thank you all so much for all of your great messages, a few of them have brought tears - you're all so great, we're so lucky to have such terrific friends and family!!!!
Austin had a great time at his tea/squirting party last night. It's so great to see him playing with other children (other than his bro and sis). He's continued the fun today and has already had a pretty good game of hide and seek on the ward. It was so cute, all the nurses even got in on it trying to hide Austin and Riley. He's in his room now playing cars with Nana.
He's been feeling good, although through the night he started a temp (38 C). He woke up looking alright, and has been playing all morning, but the temp. has stayed pretty steady at 38. We'll have to see what the day brings him, hopefully it's nothing.
Round 8, Day 4 is done. One more day to go!
Hope everyone's having a good day,
Love to everyone,
Beth
P.S. (p.m.) Austin has had a pretty quiet afternoon. Temp still hanging at 38C, but still in a good mood. He's gone for a wagon ride with Shiela, and it'll soon be time for bed. Hopefully the temp. goes back to normal overnight. The doc says he thinks it's just a mild reaction to the chemo. Good night.
P.S.S. Check out the links on the bottom of Austin's home page when you have time.. Lots of info on Neuroblastoma.
Tuesday, May 25, 1999 at 03:10 PM (CDT)
Good afternoon all,
Everything is going great. Just finished Day 3 of chemo, and still no signs of any effects. I guess the drug combination he is on and the dose is sitting right with him.
His scans are all booked for next week, so we'll get a clearer picture of what's been happening.
He has had a great day, and still has lots planned. We are hosting a tea party tonight for Austin's friend Riley, a little girl next to us who also has NB, and while she's visiting, they have teamed together to plan a squirt gun fight against the moms. Who's gonna get soaked? I wonder!
Aunt Louise will be up later, Austin has put in his order for Chinese food; we're looking forward to that!
Well, that's about it - I should get back, he's due for some meds. He's busy playing with Daddy in the playroom. We're going back to the room to shoot some hoops, and maybe squirt some nurses!
Love to everyone,
Beth
Monday, May 24, 1999 at 12:48 PM (CDT)
Happy May 2-4!!
Sorry for everyone that the weather turned out to be so yucky, but can't say I'm not a little glad, the nice weather can come back when I'm home again. Hope everyone had a nice long weekend anyway.
Well, Round 8 - Day 2, going very well (again). No nausea, eating excellent, drinking like a guzzle guts and playing non stop all day long. I'm the one that needs the naps. Nana's playing with him right now, it's nice to get a break.
Will update tomorrow, have a good night,
Love to everyone,
Beth
Saturday, May 22, 1999 at 02:03 PM (CDT)
First off, I'd like to start by asking everyone to say a special prayer tonight for two children who recently lost their fight and became angels, Jina and Dylan. These among many are children I read about everyday on the NB support list.
Now, on a happier note, last night we celebrated Victoria Day a little early. The kids enjoyed themselves. Austin really loves the company; he's pretty quiet at the time, but boy, does he talk about it for days after. He really liked the green and red fireworks, those were his favorite. It means alot to him to "hang out" with some of the guys! The cannon was a nice touch to start and finish the show, but as an added feature, (later when all the kids were gone & to bed), we had fireworks blasting out of the bonfire, a yearly tradition in the making I think. Anyway, for those who came, thanks for sharing a little early this year, it means alot to us.
We had our fingerpoke this morning, platelets are at 94. So we will be admitted tonight to start hydration and will be getting the first of five days of chemo tomorrow. Hope to keep you all posted during the week, we'll be back home on Friday.
Hope everyone has a great (& safe) long weekend!
Love to everyone,
Beth
P.S. Good luck and special prayers for Christa who starts her second bone marrow rescue on Monday. We think about you guys everyday. You can check out Christa's website at http://www.caringbridge.com/page/christabarone
Thursday, May 20, 1999 at 05:16 PM (CDT)
Got Austin's counts today. Everything is really good, platelets are coming up, but not good enough for chemo yet. He's at 60, he needs to be 75. So we'll go to the lab on Saturday morning to have them checked again, and more than likely be admitted Saturday night for 5 days of chemo (starting Sunday).
He's feeling so good, looks good too! He's just the cutest little thing I've ever seen, I love him soooo much.
Since we'll be in the hospital over the weekend, we're going to do fireworks Friday night for the kids. They're pretty excited about that!!
Will update when we know our plan for the weekend!
Love to everyone,
Beth
Monday, May 17, 1999 at 01:38 PM (CDT)
Well, we managed to have ourselves quite the normal weekend. Whoever said cancer rules, hasn't met Austin!
We had a fun time around the yard enjoying the great weather we've been having. The boys were busy digging away for treasures. Don't exactly know what they found. Spent lots of time around the pond, feeding the fish, and catching tadpoles.
Just got back from Clinic. White count and Hemoglobin are good, platelets are still hanging at 18. Hope they come up soon. He has till Friday to get to 75 before they can start chemo again. Think platelets, think platelets!!
Since his white counts are up, we went to McDonalds after clinic and actually sat inside to eat. A real treat for Austin, finishing up with an ice cream outside watching all the transport trucks go by. When we got home he walked in the door and told me how much fun he had today. He'll be able to go to Aaron's soccer practice tonight. He'll love that. Funny how something so simple can make your day so fantastic!
Enjoy the weather,
Love Beth
Friday, May 14, 1999 at 09:32 PM (CDT)
Everything's well here today. Austin had a good day, lots of playing accomplished. He called on Nana today to come out and play, he's so very blessed to have her; and so am I.
I received an email from the NB List today, those on the list probably already read it. It was a story taken from Chicken Soup for the Surviving Soul. It was about a girl (woman?) going into clinic for chemo, and for her it was a terrible place, crowded, noisy, uncomfortable, and a place where nobody laughed or smiled. She called it "hell". As she was looking around she saw nothing but tiredness and fear on the faces of the children and parents, she suddenly heard a strange sound, it was a laugh. She looked around, and there was an eight month old baby and mother playing about, baby laughing, mother smiling. It was obvious from the baby's baldness that he too had been chosen to suffer an unfair and uncertain fate. As they walked past her, she looked at the baby again. He was completely calm, his eyes bright and there was an expression of complete trust. Anyway, the story continues to say that the baby changed this woman's life. He taught her that anger, tears and sadness are only for those who have given up. He also taught her to trust. That is kind of the condensed version.
I read this story, and could only picture Austin as that little baby, always laughing, always trusting. Never letting a minute go by wondering why, but only knowing that things will get better. Having mom (that's me), love everything about him, smiling and laughing right along with him. Always searching (not always hard to find) for the small joys in every situation. We can make the most awful situations better and yes, most times, even fun. Sounds strange, but even as horrible as this disease can be, it has enriched our lives forever. We have learnt things in the last six months some people are never fortunate to learn, and our little man Austin has been blessed to learn them at the young age of three. For this I will always be thankful.
Hope everyone has a good weekend,
Love to everyone,
Beth
Thursday, May 13, 1999 at 08:16 PM (CDT)
Had a good visit at the clinic today. There's always lots for him to do. Today was a play-doh kind of day. He played Monopoly, three year old style and thought that was "pretty fun". We had to visit the ward to see all of his friends; sometimes it's hard to get him out of there to come home! Go figure.
His counts all came back pretty low. He needed a blood transfusion and his white count is 0.3, his platelets are still really low too. We go back next week to check them again.
All the kids are in bed, and I'm off to watch GH,
Love to everyone,
Beth
Wednesday, May 12, 1999 at 08:00 PM (CDT)
Austin's feeling a bit better today. He was really pale yesterday, and a bit quieter than usual. He was his old self again today though. He's just like the energizer bunny!
We're on Day 13 of Chemo, so that is a good sign. Usually his counts start to come up around Day 18. We're due back for another round of chemo on the 22nd.
I'm not too great at writing what's up here, but I'm really glad everyone is able to hear first hand what is happening. We are so blessed to have our family and so many friends that are constantly showing their support and love.
Back to clinic tomorrow for a checkup. Will let you know how it went.
Have a good night,
Love Beth
Tuesday, May 11, 1999 at 10:06 AM (CDT)
Good morning! Hope everyone had a nice weekend, and hope all you mothers out there had a nice Mother's Day.
I had waken up to my little angels serving me All Bran cereal in their plastic cereal bowl, holding it every so carefully on a silver platter. So sweet. They also put flowers in each room for me to find when I got up. I'm so blessed and so very lucky to have three beautiful children.
Yesterday was clinic day. As I said before, the next two weeks we keep our eyes on counts. To follow along here is the general idea of what we look for:
White Blood Cells: these are the cells in our blood that fight bacteria infections, infections and allergic reactions. The granulocytes are what we monitor to determine whether or not he is neutropenic (counts are less than 0.5). A normal gran count is 3.9 - 10.2 When he is neutropenic, Austin requires hospitilization and IV antibiotics if a fever (38 degrees or more) occurs. HIS GRANS YESTERDAY WERE 0.2 so I monitor his temperature regularly, cross my fingers and hope it stays normal! As well, we have to be very careful not to expose him to germs. This is the hard part. As well, he can't be exposed to chicken pox, as this could be dangerous to him. So more or less, he is in isolation at home.
Red Blood Cells: contain a protein called hemoglobin which gives energy to the body, provides colour to the skin and carries oxygen to all parts of the body. Normal Hgb levels are: 117 - 149. HIS HGB YESTERDAY WAS 89. They will usually transfuse if his counts go below 70. We expect this to happen by Thursday. He is starting to look pale, although he always maintains that energy level!!
Platelets: Are cells that prevent bleeding and promote clotting. Normal levels: 180 - 440. YESTERDAY PLATELETS WERE 14. So yes, he did need a platelet transfusion. Things we have to watch for are nose bleeds, bruising, bumps to the head, etc. Sometimes hard to do.
Hard to believe, I didn't know any of this before November. I also didn't know that so many people (children) need blood products, and I thank God everyday that there are people out there giving my child the blood he requires to stay alive. A gift that one day I know I will repay.
So for now, we just check the temp. and are expected back to clinic on Thursday.
Have a nice day,
Love Beth
Friday, May 07, 1999 at 09:09 PM (CDT)
An uneventful day to say the least. Austin & I puttered around most of the day, I don't even know where the day went!
Of coarse, Austin spent most of the morning playing Nintendo (what else?). We had our visit with the nurse that comes everyday to flush his tubes (to keep them from clotting), and to get his daily dose (needle) of neupogen (to stimulate white cells). Although it may sound terrible, it really isn't, actually Austin helps out quite a bit. He helps us get everything ready and he even pushes the syringes himself to flush the tubes. His vocabulary is becoming somewhat "amazing" for a three year old. Neupogen, insuflon, neutropenic are a few examples of what he comes out with daily (and I might add perfectly clear). Today he was drawing a picture and asked me "how do you draw an IV pole?". Next time I'm able to I'll try to upload the picture he drew, it's pretty good. By the way, check out the new pics.
I made it to the school yesterday, Aaron's class sang to the school. It was really cute. The Kindergarten Mother's Day Tea was so sweet. I really miss the two of them when I'm gone, I'll be glad for them when this is behind us.
Hope everyone has a good weekend,
Love Beth
Thursday, May 06, 1999 at 10:08 PM (CDT)
We're home! We're both so happy to see Aaron and Amber and Daddy too!
Last night and this morning, pretty much the same. Austin was yakking a mile a minute last night, jumping up and down on his bed ... I didn't think he was ever going to stop.
Although we're glad to be home, it's so sad to leave behind friends that we've made. Austin and Matt (Mario and Luigi), certainly did take to each other. Even though we were in isolation, he was in our room playing with Austin most of the time. During our week stay, there were four other children with NB on our ward. Unbelievable!
So all in all, an uneventful round of chemo, which suits us all just fine!! From here, we monitor Austin's blood counts for the next two weeks. Will keep you posted!
Thank you all for your love and support.
Love Beth
Wednesday, May 05, 1999 at 09:51 AM (CDT)
Round 7, DAY 5
One more day! Everything is going fantastic. Austin looks better today than when we came in for this chemo. He has surprised everyone on how well he has tolerated this round. He has been so happy and playful, it's so nice to see.
I thought yesterday was going to be a yucky day because Austin was still snoozing at 9:30. But he opened his eyes and looked at me and said "Knock knock Mommy" (who's there), "Tendo (Nintendo who?), "Why didn't Tendo cross the road", (why?), "because he didn't have enough guts!" Hey, what do you want from a three year old? I knew it was going to be a good day.
We'll have one more day of chemo and be able to come home tomorrow. His white count came up a little, he needed a red blood transfusion yesterday, we'll see if he's OK today.
Can't wait to go home tomorrow, and get back to somewhat of our normal routine. Amber has her mother's day tea at school, I hope we're back in time for me to go.
See you tomorrow,
Love Beth
Monday, May 03, 1999 at 03:45 PM (CDT)
Round 7, Day 3
Having a good day again today. Everything has been going pretty good. He is still eating well, which is a very good sign. His counts have come down quite a bit since yesterday. He is now neutropenic (already), and we're heading over to an isolation room in the next little while.
He's busy playing with the new fishing game from Nana, and trying to catch the "great big shark" on his bed (Daddy).
Will see you all tomorrow,
Love Beth
Sunday, May 02, 1999 at 12:33 PM (CDT)
Hi everyone,
Well we're finished Day 2 of our chemo. Austin feels great so far. He's in his room right now playing with Mathew his roommate and Shiela. Mathew is 8 yrs old and a Nintendo nut, so he and Austin are keeping each other great company. Mathew has been on Austin's bed pretty ne'er the whole two days. I'm so happy Austin is making so many friends here.
The chemo is going good. He hasn't felt yucky yet. Hopefully this is a good sign, and he'll breeze through. (Knock on wood). He is eating well and hasn't had the case of the "grumps" yet.
The doc was in yesterday, and told me they will retest him after two rounds (six weeks), so this is better news!
Well, I should get back, Austin wants to go play outside for awhile. There is an outside playground for the kids, which is really nice now that the weather is so nice.
God Bless,
Love Beth
Friday, April 30, 1999 at 03:45 PM (CDT)
We're home from the clinic, just in time to pack our bags and head back for five days of chemo. He will be admitted tonight, and start chemo tomorrow.
Spoke to the docs. After consulting with several doctors (Montreal, Alabama, Calgary and Chicago), they've all agreed to the following: Cyclophosphomide and Topetecan for five days every 21 days until his bone marrow tests negative. He will be checked in three months from now to see his response. They have given no indication as to how long he will be doing this for. Dr. Kletzel in Chicago has put a few children on this combination and have been on it for as long as ten months. So we'll see! Maybe Austin will fool them all.
The long term plan would include a bone marrow rescue once his marrow is clean. If his marrow is clean and still has visible tumor, surgery and radiation are an option before rescue.
Hopefully I can get my hands on a computer at the hospital and keep everyone posted on his stay there.
Thank you everyone for your support and prayers, we couldn't do this without the love that has been shown by everyone through this very difficult time. Tomorrow I will have my chin up and deal with what we've been dealt, yet another time. Austin WILL NOT give in, and either will we!
God Bless everyone,
Love Beth
Thursday, April 29, 1999 at 08:09 PM (CDT)
We're off to the clinic tomorrow. If Austin's counts are OK, I'm almost sure we will be admitted Friday night for Round 7 of chemo.
The kids had a good day today, other than Austin had whacked Amber in the eye with a baton (by accident of coarse). She had a bleeding boo boo. He was so sad, he gave her a big hug as soon as he did it. He doesn't like to see other people hurting.
Great news from Florida, for those who have heard me talk about Christa. She has had her first stem cell rescue, and her white count zoomed up today. HURRAY! She is three years old and was diagnosed with NB a week before Austin. Christa and her mother are very special to us!
Will let you know what the docs have decided tomorrow.
Good night and God Bless,
Love Beth
P.S. Changed the pics.
Wednesday, April 28, 1999 at 05:19 PM (CDT)
Austin's medical history:
For those who don't know, Neuroblastoma is a solid cancerous tumor that begins in nerve tissue in the neck, chest, abdomen, or pelvis but usually originates in the abdomen in the tissues of the adrenal gland. By the time it is diagnosed, the cancer usually has spread (metastasized), most commonly to the lymph nodes, liver, lungs, bones and bone marrow. Neuroblastoma is predominantly a tumor of early childhood; 2/3 of children with NB are diagnosed when they are younger than 5 yrs. old.
Austin was diagnosed with NB on Nov. 13/98 after having a CAT Scan done that morning. On Nov. 15/98, Austin had surgery to have a port-a-cath inserted (central venous line), and a biopsy on the mass that was found in his abdomen. All the scans / tests confirmed his disease and he was staged NB Stage IV. The tumor in his abdomen was large, crossed midline and was unresectable. Metastases has occurred spreading to his bone marrow, lymph nodes, and numerous areas on the bone. (skull, neck, shoulders, spine, hips, legs and knees). They also found another mass in his chest (behind his lung). He started his protocol POG 9640 on Nov. 20/98 receiving his first round of chemo.
In December, we were told Toronto Sick Kids did not support the POG9640 protocol, so after the fourth round, we missed the first stem cell harvest, and were taken off the study. We still chose to follow the protocol to the end, minus a rescue (it included a second rescue).
After 5 rounds of chemo, his evaluation showed that the mass in abdomen had shrunk about 80% in size (leaving it the size of a grapefruit), mass in chest had decreased considerably (now the size of a walnut), bone marrow was negative (CLEAN), and MIBG scans could not detect numerous bone metastases previously seen. There was still uptake on the skull shown on a bone scan (could be scar tissue). The mass in abdomen and chest looked to be removable!
His second surgery was done on March 10, 1999. Eight hours in the operating room, 5 1/2 in the recovery room. He had his port-a-cath removed, and had a cook catheter inserted; and the surgeon tried his best to remove the mass in the abdomen. The tumor had fully wrapped itself around the renal artery. He was able to remove the tumor and save his kidney, but he was not able to remove a piece behind the liver, or small spots adhered to the aorta. He estimated that he removed 90% of the mass. Because of the length it took in the abdomen, he opted out of beginning the chest as this would have been at least another 4 hours.
On March 23rd, we went to Toronto Sick Kids to harvest Austin's stem cells to be used later when he has his stem cell rescue (bone marrow transplant