Journal History
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Sunday, September 2, 2012 9:02 PM CDT
Where does the time go. Happy Labor Day to all! School starts again in two days. It always hits me hard cuz then I know I have another anniversary day just around the corner. Addison, went to heaven Sept 9th, Nine years it will be. Oh I can't believe that. Life continues on....Ashley is a senior this year...we already did her graduation pictures. She is also doing 14 credits in college. I am so proud of her, she has overcome so much in her life. Austin is going into tenth grade and turned 16 the end of August, which we know means a drivers license. He is still in basketball, loves all things most boys like. He has made some great strives in his life also. My kids make me proud everyday. I love them so much. I know Addison is with them each day. I do wish he was here with us in person but that wasn't how life was going to be for us.
I lost my job this year. It was very hard to know I wouldn't be going back to the school, but it was a life change that was meant to be. I am looking for a job and feel pretty good I will find something.
God Bless you all!!!
Deb, Ashley and Austin
Addison, we love you more today than yesterday. XXXOOOOXXXOOO forever..
Thursday, April 5, 2012 1:54 PM CDT
How the time has gone. I soon will be on Addison birthday!!!It is usually easter time and his birthday....Still have my emotional breakdowns and this year seems to be the worst. It has already started and I hope it ends soon. I seem to cry about everything Does my mind play tricks on me? Do I read into everything to much? I don't know but I am an emotional wreck!!!!
The kids are doing good. Austin is in Tennis and loves it. He just wrapped up another year of basketball! Ashley is working going to High school and doing College classes and is thriving. She just went to her prom and looked beautiful! I am so proud of my kids!!!
God Bless you all!
Deb, Ashley and Austin
Addison you are missed everyday!!!! I love you always and forever! Happy Birthday my sweet angel.
Thursday, December 22, 2011 8:54 PM CST
MERRY CHRISTMAS!!!!
I know I am early but I have to write today because life gets away from me and I forget. I hope everyone has a blessed holiday season and remembers what it is really about.
We are all doing well and are on Christmas break. We miss Addison and wish he was with us this holiday season but he is not so we move forward and continue on with our life without him. Ashley is in a new school this year and is doing so good with her grades that she will be starting college classes in Jan. Only problem is it is back and forth from college to high school and mom gets to drive her. She is working as well and has a boyfriend they are dating for 6 months. He is a very nice boy. Austin is in ninth grade this year and also doing good with grades. He is again in basketball so that keeps him very busy everyday.
Happy Holidays and don't forget to hug your kids and tell them you love them. Please pray for all the kids who are still fighting for there life.
Deb, Ashley and Austin
ADDISON, WE LOVE YOU!!!!!XXXXXOOOOOXXXOOOOXXOOO
Wednesday, November 23, 2011 7:21 PM CST
HAPPY THANKSGIVING EVE!!!
I wish all a day of giving thanks for all you have....I pray for those who have lost someone special and hope you find peace in this holiday season.
My daughter, ASHLEY, will be seventeen on friday and I thank god everyday she is with me. Happy Birthday my sweet girl. I hope someday my children will find there happiness and peace with the loss of there little brother who at this time of year they have a difficult time with his loss. We miss him everyday but at the holiday time it seems to be the hardest.
May God bless you all!
Deb, Ashley and Austin
Addison, we love you so very much! xxxoooxxxoooo
Saturday, September 10, 2011 10:07 AM CDT
Eight years ago yesterday my sweet precious boy went to heaven. Life does get easier but the pain is always there. I still have alot of guilt that I couldn't change the ending. I love you Addison, you are in my heart and will always be the most precious gift I have ever recieved. I shall see you again someday. xxxxoooo
Deb, Ashley and Austin!!!!
Tuesday, August 9, 2011 8:55 PM CDT
The summer is coming to an end and I get alittle sad this time a year....Today marks the day when all the shit started to go wrong with Addison! Sept. 9, is when it ended. Wow it will be eight years this Sept. I remember it like yesterday. The truth is it does get better with time. I read some of my parents who have lost and there are having such a hard time....I remember thinking it will never be okay again. But it is and it does. My heart goes out to all who have suffered this horrible pain. Our sweet nurse at school was in remission for awhile but found out hers is back! Please pray for my friend Barb as she starts her battle all over again.
The kids are getting older and don't need me any more (not as much)Ashley will be 17 in November. Austin will be 15 at the end of August. He started drivers training classes this week. Oh me oh my!!!!One car and three drivers OUCH!!
God Bless you all!!
Deb, Ashley and Austin
Addison we love you today as much as yesterday.
Friday, June 10, 2011 8:17 PM CDT
Summer is starting and we are enjoying being done with school...For awhile. Austin did a week of basketball camp already and it was a very intense camp. Ashley went to camp for a week and had a good time.
I am off for the summer but have some summer jobs lined up so I don't have to try to suffer throught the summer without pay. I like being off for the summer just miss the paycheck. I started a new job this year and so loved it. I am with the 3, 4, and 5 year olds. Makes me think of Addison everyday I'm there. They talk like he did and it is that cute age of kids.
I hope everyone has a great summer. I shall post if anything happens. Thanks for still being here with us.
Deb, Ashley and Austin
Addison, my sweet angel, I love and miss you so much!!!
Friday, April 8, 2011 1:47 PM CDT
Happy Friday everyone.
Tomorrow is my sweet angels earth birthday! 12 years old...What would you look like? I know you would have a heart of gold! You were such a loving, caring child. How I miss you. Your sister writes you peoms and talks to you alot. I hope you hear her! Your brother will be very sad tomorrow he shows me is emotions especially on your birthday he cries even at 14 he still cries for you. It breaks my heart that they don't have you around. You and Austin would be the best buddies. Ashley would be your protector. She always loved to mother you and take care of you. I think I was the luckiest mom to have my three wonderful kids. Even tho you are not here with us I think of you everyday and am just so glad I had you! Wish it would have been forever but then nothing is forever! We will all be together someday! Happy Birthday Addison! You are so loved here on earth the three of us miss you and that will never change. Please watch over your sissy and broder. Momma loves you.....
Your family!
Sunday, March 20, 2011 7:26 PM CDT
Oh, my goodness, time sure as gone by fast. It's almost the end of the school year and I haven't written since dec. I hope you are all doing great out there in cyberspace.
We are hanging in there doing the same old same old. We are almost done with basketball one more tournament in April and then done. It is along season. Austin is going to do tennis this year for something new. Ashley is not doing a spring sport so that is fine. She is to busy with her girlfriends.
God Bless you all and I shall write more later.
Deb Ashley and Austin
Addison you are loved so very much.
Friday, December 31, 2010 12:24 AM CST
In less than 12 hours we will be in 2011....Wow I have to learn to write a new year. How many times does it take before I will write 2011. ALOT!
My wish for 2011 is that childhood cancer is cured and there is no more. I will make no new years resolution because seldom do I stick to it.
I wish everyone peace and happiness love and joy. I know that some are starting there journeys without a child and this will be the year of first. For you I hope you find your peace and faith. And don't let go of any of your memorize.
May God be with you all and Bless your Lifes. I am looking forward to this year.
Deb, Ashley and Austin
My sweet ADDISON, I love you so very much and you are always in my thoughts and always will be. XOXOXOXO
Sunday, December 12, 2010 9:32 PM CST
Where has the time gone. Thanksgiving was Ashley's 16th birthday. WOW....she is growing up. To think she was 9 when Addison went to heaven. I am so proud of her she made the honor roll this semester. Needless to say over the Thanksgiving weekend I had about 18 kids at my house to help her celebrate.
The Christmas season is upon us and we are getting our decorations up and the baking made. I love the holiday and think of Addison with everything I unpack. He loved all the flashing lights and decorations.
I would like to wish everyone a MERRY CHRISTMAS AND HAPPY NEW YEAR!!!
I am sad this week as I have updated you all on alittle girl named Mary....she earned her angel wings and went to heaven. She battled the same cancer as Addison for more than 4 years. I never meet her but feel like I knew her from her moms writings. Please pray for them as they have to go through this ordeal of missing there sweet precious girl and try to live without her laughter and hugs and kisses etc...
God Bless you all.
Deb Ashley and Austin
Addison, miss you and love you!!!
Sunday, October 31, 2010 1:26 PM CDT
HAPPY HALLOWEEN EVERYONE!!!!
As today is starting I wonder how we got here. My sweet baby Addison loved halloween. He of course, was batman everyday no matter if it was halloween or not. Today my precious girl was confirmed at church today. I didn't think we would make it through the first year after he went to heaven and look my little girl will be 16 on Thanksgiving this year...today she was standing up there and I was so proud. We will survive all of us. It is hard and we struggle but we always have God by our side and that is a miracle.
Austin, is taller than me now and I had the honor of having him acyolte for Ashley's service. It was an amazing day. I am such a proud mother. I just wish we didn't always have the what would be if Addison was here over us. We miss him and we love him and we struggle with it. But we go on and we are doing well. The only sad part for us is there is no family for us....No one is involved with our life and that makes it very sad. My mom is in heaven with my baby waiting for us. My dad did show up today and I was thankful...My brother never returned any calls so he was a no show.
I am sad also to let you all know that have followed and I have talked about Mary who also has Addison's cancer is on hospice and will maybe seeing her last halloween not sure if she will make it for Thanksgiving or Christmas. This is not right. I don't like to know anyone else is entering this group of (we don't have a name but none of us wish to be in it). Losing a child is the worst, watching the end and nowing that it the last time we get to kiss, hug, and love them. well it is heartbreaking.
Please pray for all families going through this pain. Most importantly, hug your kids and tell them how much you love them. There are no guarentees for when it is over.
God Bless Everyone.
Deb, Ashley, and Austin
Addison, its Halloween and I will be thinking of you every time I see a batman. I love you my sweet angel. Momma loves you!
Monday, September 6, 2010 6:50 PM CDT
It is a sad night, school starts tomorrow and I am not even close to saying goodbye to summer. This is a hard time of year for us. Going back to school and thinking of the end of Addison's life here on earth. It will be seven years on Sept. 9. Oh what a sad day for us.
Addison, would have been eleven this year. What would he look like? What would he play and be when he grew up? All questions with no answers. He will always be that sweet little boy with his bald head wearing a batman costume and telling everyone he was dood. I love you Addison.
The kids are growing up fast and I think they have grown into some fine fine young adults. I am going back to school in hopes of getting a better job and not having to always say no. It has been difficult raising them on my own. But the rewards far out way everything. I love them both so much it hurts. They have hearts of gold even tho they have been thrown alot of curves and pot holes in there life.
They batmobile continues to be a sure headache but I can't seem to let go of it. Everytime I let something go I feel like I am letting Addison go too. There is few things that remain of his and it kills me to see the car getting old and getting tired. It was at the mechanics for four months and now it is leaking gas and still is not running very well. Enough about that. I ramble time to time.
I don't really even know if anyone is out but if you are I thank you for being there. Have a safe rest of Labor Day. Remember Sept is Childhood Cancer Awareness month....wear gold and support it.
God Bless you all.
Ashley, Austin and Deb
ADDISON, WE LOVE YOU MORE TODAY THAN YESTERDAY!!! Miss you and someday we will be with you again. Hugs and Kisses are being sent to you....Did you get them.
Thursday, July 1, 2010 11:26 PM CDT
Hello (I don't know if anyone is out there any more) but if you are....Have a wonderful 4th of July and please don't drink and drive...be safe.
Addison's last 4th of July was at the Ronald McDonald House and we walked to the Franklin Bridge and watched the fireworks. I still remember how exciting it was for the kids. Life sure has changed and I will forever miss him!
Ashley is doing a college program again for 6 weeks and I see her on the weekends only. She loves it, living in the dorms being all grown up...Austin is doing basketball they have a tournament in St. Cloud July 17th. I hope I have a car by then...My car went in for repairs 3 months ago. UGH!!!!
God Bless you all...Be careful and safe this holiday weekend.
Deb, Ashley and Austin
ADDISON, I LOVE YOU!!!! Sending you lots of kisses and hugs....
Thursday, June 3, 2010 7:20 PM CDT
Today was the last day of work and the last day of school...The kids are very excited to be done! I am but hard to go the summer with no paycheck. UGH!!!!
I am still recovering from my foot surgery and hope by the time school starts again I will be back to normal. It has been along road and I hope I didn't make mistake on doing the surgery.
My ginger (mini dashund) had puppies and they are the cutest thing. I hope to find them some wonderful homes.
I pray everyone has a blessed summer. Please continue to pray for the children still fighting, the list continues to grow and the fight never ends. One special little girl I have talked about for along time (Mary) is still fighting. Thanks everyone....Give your kids all the love and hugs they want and don't ever stop telling them you love them.
Deb, Ashley, and Austin
ADDISON, HUGS AND KISSES TO YOU!!! I LOVE YOU!!!! :-)
Thursday, April 8, 2010 11:07 PM CDT
In less than 55 minutes it will be Addison's birthday....HAPPY BIRTHDAY MY SWEET BABY! You will be 4 forever (you would have been 11 years old.) OMG! How I still ache to be with you. See you, smell you, hug you, hear you talk...anything would be great. I miss you and I know Ashley and Austin still hurt and wish you were here.
Life continues how, why all questions there are no answers for. We will be together and that is what I look forward too. Until then, you are forever in our hearts and thoughts and will stay there. We love you and miss you.
God is Great
Deb, Ashley, and Austin
Monday, March 15, 2010 0:00 AM CDT
It's March already....WOW!
I just wanted to ask for some prayers tomorrow I mean today I am having surgery on my foot. I have a tumor in between my toes, a heel spur so big the doctor doesn't know how I have been able to walk, and my bones are curving so they are going to cut the sides of my foot open and cut the bone off and then screw it back in. I also have no cartlidge left in my big toe so they are going to fix that. I will not be able to walk for 6 to 8 weeks. This means no work can't drive no paycheck...UGH! And he said the pain will be the worst I have ever had. The good news is if I do this and it goes good I won't need new knees and hips. It is genetic, found it when Austin was having some problems. It is called Gorila bones.
The kids are doing great. Basketball is almost over they have one tournament left and then baseball will start.
Thanks in advance for the prayers. God is Great.
Deb, Ashley and Austin.
Addison, I love you always and forever.
Wednesday, February 17, 2010 7:55 PM CST
I hope everyone had a fabulous Valentines Day! I yet to have a sweetheart but am hoping next year I will....I have to keep the hope alive. For know my kids are my sweets and I love them dearly.
Austin's basketball season is coming to an end which is very hard for mom cuz I love it so much. He had a great year this year and his coach was awesome. Makes a huge difference when you have a great coach. Austin entered the hoop shoot contest this year which is a free throw contest and won the local. He went on to the Districts and got 18 out of 25. He took first place there and went on to State. He tied for 3rd place got 21 out of 25. For the tie they shot 5 Austin got 4 out of 5 and took fourth. So for the State of MN Austin finished 4th. At the banquet they said at the local level it 100,000 kids started this. I am so proud of him.
Ashley is doing good, she is a 15 year old girl. Need I say more. I love her!!!!
I am hoping the winter is almost over.
God Bless you all..
Deb, Ashley and Austin
Friday, January 1, 2010 11:58 AM CST
Well 2009 is over and another year is starting. I hope everyone finds what they are looking for. I know I am surely looking hard and wide for mine. I have been without internet for about 3 months so it is good to be back in the living. Funny how we take things for granted.
2009 came with alot of ups and downs for us and I am hoping for a nice new year. We are all doing well. Of course, Christmas time seems to be a time we all finally stop and our bodies seem to shut down. We are feeling better and will be ready to get started to go strong again. We are out of school until Jan. 4.
Austin is doing great in Basketball, his foot bone is growing outward instead of straight so it has been alot of doctor appointments....but I think we are getting that under control. They call it Gorilla Foot. How funny is that.
Ashley is not doing Basketball this year she wanted a break. I wish she would do something but she is a teenage girl and they know everything better than we do. So I just go with it.
For me the economy got me to I lost 2 of my jobs. I only have one but am looking for something...There just is nothing out there right now. Thanks for signing in and letting us now you are still with us. I really love it.
Good luck in the new year and God Bless you all.
Deb, Ashley and Austin
ADDISON, YOU ARE ALWAYS ON MY MIND, I LOVE YOU AND MISS YOU!!!!!!
Saturday, October 10, 2009 8:44 PM CDT
I find it hard to journal these days. Not sure anyone is out there and having a hard time expressing myself. Life has great ups and downs so I wonder why would anyone care about mine. Everyone has there own problems and wonderful moments.
I went to a parenting workshop this weekend. Trying to figure out how to deal with teens. It is so different from when they are little and want to do the right thing. I have realized in our journey with Addison's cancer that I have spoiled my children. I kept saying to myself I must take into consideration that they watched they brother die for two years. Then we buried him, there father left, there grandma moved in with us (to die) and all this happened within a few months. My poor children had to endure more in there young life than I would in my 40 years. How would I ever make things right for them.
Well, I did the best I could. I only hope I did enough. I hope they will be able to have a wonderful, happy life and be able to handle the problems life with throw at them. Life is highs and lows and we only hope we can handle the lows until the highs return.
Sadly, when life is going good for me I always wonder when will something bad come. I know it will it is just a punch in the gut when it does. I know these are lessons in our life and God will only give me what I can handle. Thank you God for always walking by my side. I can do nothing without you.
There are many children out there that are fighting the battle of there life and my heart goes out to all the families dealing with what I have already been through. I hate that someone else will suffer the pain of losing there child. I wish no one had to deal with this kind of pain. So give your child(ren)a hug and tell them you love them. Every moment is precious.
Deb, Ashley and Austin.
Addison, I love you and miss you and only can wait until we are reunited.
Monday, September 7, 2009 8:26 PM CDT
HAPPY LABOR DAY TO ALL!!!!
Hope it was a safe and fun day. We always relax and prepare for the coming school year. The kids start tomorrow and so do I. I go back to work tomorrow too. I always hate this time of year it is very difficult for me.
Addison will have passed 6 years ago on Wednesday the 9th. We have missed him so much. Talking to the kids about it really makes me sad cuz, Austin was so young he doesn't remember alot of things we did and people we meet. Maybe that is a good thing I don't know. Ashley of course remembers everything.
As the years go by they don't seem to get any easier and this time of year is really a test for me. I do alot of crying and alot of praying. In the end I know I will make it through another year. Thank you GOD. Addison would be going into 4th grade and I wonder what would he look like. People think he would look like Austin but they never looked alike so I wonder...He was so different. I am so grateful for having him as long as I did. I would never change that in a million years even if we had to go through it all over again. I would....I'm honored that GOD thought I was special enough to be Addison's mom. (He was an angel) He will never be forgotten by us. We love you my sweet baby boy.
Hug your kids and tell them you love them. GOD BLESS YOU ALL.
Deb, Ashley and Austin
ADDISON, YOU ARE ALWAYS IN MY HEART.XXXXXX00000000XXXXXX00000XXXXXX000000XXXXX00000000XXX
Wednesday, August 26, 2009 9:14 PM CDT
Just wanted to send out a HUGE HAPPY BIRTHDAY TO MY TEENAGE BOY.....AUSTIN...He is 13 tomorrow. It is a bittersweet time of year. He has a birthday and we are rounding the time Addison left us. But for tomorrow it is a special day. If you have time send Austin a hi!
Thanks for you continued support. I really love to hear from you all. I know most of you send me messages to my email but you can leave them here too.
School starts on Sept. 8th and of course Sept. 9th is Addison angel anniversary. It will be 6 years...it doesn't get any easier just more manageable.
Kiss your kids and tell them you love them. Take the time and spend the day with them. Don't put it off. Have a great end of the summer.
Deb, Ashley and Austin
Monday, July 27, 2009 9:57 PM CDT
Wow it has been along time. I check and see people are still checking in but no one signs in so I am not sure if there are anyone interested in my journals. Would love to hear from all my lost friends. It seems when Addison died everyone was so wonderful and I will never forget that but where is everyone now. Where have you all gone. I miss hearing from you.
The kids are doing well and enjoying summer. Ashley did a summer program that gets them ready for college and she loved it. I think because she had six weeks away and lived in a dorm. Didn't have to listen to mom tell her to clean her room and do the dishes. Austin is finishing up with baseball we had one tournament last weekend and we played in the championship game but unfortunately we lost. But it was a great game and they held there own. For me, life has been good for awhile and now seems to be going sour again. Don't know why we can't have calm all the time quess that would make it boring. I trust that God will help me through whatever happens and I always am thankful for that.
Enjoy the rest of the summer and I will try to update sooner than later. God bless you all and remember to tell the one you love how much they mean to you before its to late. Love your kids with all your heart and always let them now you love them.
Deb, Ashley and Austin
Addison, my sweet angel, wish I would get some signs from you. Could really use one or two about now. I LOVE YOU SO SO MUCH. HUGS AND KISSES ARE BEING SENT UP TO YOU. MOMMY
Sunday, May 10, 2009 7:19 PM CDT
HAPPY MOTHERS DAY TO ALL YOU WONDERFUL MOMS OUT THERE.
I HOPE YOU ALL HAD A CAREFREE DAY AND GOT WAITED ON ALL DAY. WELL WE CAN DREAM...............
I DID HOWEVER GET ALOT OF YARD WORK DONE AND THAT MAKES ME HAPPY. NOW ALL WE NEED IS THE HEAT TO COME AND GET RID OF THIS COLD. IT ACTUALLY SNOWED HERE YESTERDAY MORNING ABOUT 11:00 A.M. NEVER STAYED ON THE GROUND BUT THE OPENER FOR FISHING WASN'T SO PLEASANT. (I WOULD IMAGINE.) I WASN'T DUMB ENOUGH TO GO FIND OUT!
MAY ALL YOU MOTHERS BE BLESSED WITH WONDERFUL CHILDREN THAT APPRECIATE YOU. GOD BLESS YOU AND HAVE A GREAT DAY.
DEB, ASHLEY AND AUSTIN
ADDISON, I AM SO HONORED THAT I WAS YOUR MOTHER. I MISS YOU AND LOVE YOU SO VERY MUCH. MOM
Wednesday, April 8, 2009 2:09 PM CDT
OMG!!!!!Tomorrow is Addison's birthday...He would be 10. It is hard to believe he is not with me. Last year we had a big balloon release. Those nines seem to be the number. He was born on the ninth he died on the ninth he was nine last year so we let 99 balloons go into the sky up to him. This year we will just try to make it through the day and be happy we had him for 4 great years.
I haven't had any signs from my sweet angel and I sure miss that. I miss his silly little talk and his compassion and love he had for us. He was always happy and smiling and that smile would melt you like no other. I still see it and it still makes me smile. Of course, I wish he was still here and with me and his siblings. But he is in the best place and someday we shall all be together. Until then I must continue to live not in a zombie like state but in the living state. The worst part besides never seeing my child again here on earth is watching the pain and agony it has been for Ashley and Austin. They are so strong and so grown up but there pain is real and hard to get over. It's bad enough to have a parent lose there child but a brother or sister that loses one of there siblings it just is wrong...
May you never forget what is important in life and keep your priorities in order. That day that could never happen to you could happen any moment. Love your children and family and always tell them so. Always BELIEVE that God is doing what is best. He has the big picture. I thank him everyday for letting me be Addison's mom and I still feel honored that he chose me. God Bless each and everyone of you. Thank you for all the support you have given me over the years, I so appreciate it. God is Great!
Deb, Ashley and Austin
ADDISON, WE LOVE YOU ALL THE WAY TO HEAVEN AND BACK. HAPPY BIRTHDAY MY SWEET BOY!!!!!!XXXXXOOOOXXXOOOOOOXXXXOOOO
Wednesday, March 18, 2009 10:40 PM CDT
March 25, I am home and recovering. Thanks for thinking of me and praying for me. I am doing well. Please sign in and say hi.
Good Evening. I know people still check in....so please leave a message. I love to hear from people and you inspire me to go on. We are still doing well. Ashley is in the play and is so excited. She is the nararator. (sp?) Austin is still doing basketball yes it is still going on. Tomorrow night is Moms vs kids. Should be exciting.
As for me, I could use some prayers. I am still doing well, just going in Friday for surgery. Having 4 procedures done at once. Really hate hospitals and they are kind enough to do it all and not make me wait and do some and come back. I am greatful for that. I will be out of work for 6 weeks that is alittle scary. So if you want to leave me a message I could use the company (some reading). Thanks.
Remember to hug your kids and let them know you love them no matter what. Thanks for all the support over the years. I could not do it without all of you out there.
Deb, Ashley and Austin
Addison, my sweet angel, I know I will feel you during this time. I miss you so very much. XXXXOOOOXXXOOOXXXOOO forever. MOMMY
Sunday, February 22, 2009 10:15 PM CST
Good Evening,
I just wanted to post a short message. I have had this terrible problem when I am sad and upset I write on Addison's page and it seems to help me but then started thinking why does anyone want to know that I am having a bad day again. Well, I am in a great mood and things are going fine right now.
It seems when Addison died then Dave and I divorced and my mom got cancer and life seemed to be one bad thing after another. Well onto what I hope is better. The kids are doing good and I think right know we are on the up swing of the rollercoaster. I know better than ever that this can change by the end of tonight but for now I am at peace and happy.
There is always a pain in my heart and that will always be there. I haven't updated on the other cancer kids in awhile but I do want to let you all know that Mary who I've written about is not doing so great they were taken off her trail and they are really at the end of options. Please pray for Mary. Owen who is from MN had surgery and removed a tumor (he has the same cancer as Addison) When they did his AFP (test to measure the cancer) It was higher and they will be going in for a CT scan. They need prayers. Thanks
God Bless you all and remember to love your children and let them know you love them don't assume they now. You never know when your time will be over with them. One of the pages I follow let this on there page and it really hit home for me.
"We will always be sorry that he died"
"We will never be sorry that he lived"
I will always be honored that God let me be there mother.
Deb, Ashley and Austin
Addison, hugs and kisses to you....I miss you more today than ever before. I know that I will see you again and we will be reunited for eternity.
Wednesday, December 24, 2008 1:07 PM CST
MERRY CHRISTMAS!!!!!
WOW HOW TIME GOES BY...THIS IS OUR 5TH CHRISTMAS WITHOUT ADDISON, IT JUST DOESN'T SEEM POSSIBLE. THE PAIN IS STILL SO REAL AND THIS YEAR SEEMS LIKE IT IS HARDER. SOMEONE ONCE SAID IT GETS BETTER WITH TIME. I DON'T THINK THIS YEAR WAS SO GOOD IN THE PAIN DEPARTMENT. I THINK IT WAS THE HARDEST YEAR FOR ME. MAYBE I FINALLY HAVE STARTED TO HAVE MY DOWN TIME AND THE SADDNESS SEEMS TO BE SO REAL. I HAVE CRIED MYSELF TO SLEEP FOR ABOUT A WEEK NOW AND DON'T REALLY LIKE THE FEELING. I OFTEN WONDER HOW WOULD ADDISON LOOK, HE WOULD BE NINE YEARS OLD AND IN THIRD GRADE. I KNOW HIS BEST FRIEND WOULD BE THIS BOY NAMED KYLE. KYLE IS MY BUDDY, WHENEVER I SEE HIM EVEN AT TARGET OR WHEREEVER HE WILL COME OVER AND SEE ME AND SAY HI. HE IS SO KIND AND I KNOW HE WOULD BE ADDISON'S FRIEND.
I HAVE HAD A VERY HARD TIME WITH CARINGBRIDGE PAGES BECAUSE I READ AND CAN'T HELP BUT KNOW THERE PAIN AND DON'T WANT ANY PARENT TO GO THROUGH WHAT SO MANY OF US HAVE. IT IS SO TERRIBLE AND NOT RIGHT. THESE SWEET INNOCENT CHILDREN GETTING CANCER AND GOING THROUGH ALL THEY DO. THEY DON'T COMPLAIN AND THEY DON'T EVEN KNOW MOST OF THE TIME THIS IS NOT NORMAL. I REMEMBER ADDISON WHEN HE HAD TO HAVE HIS THIRD SURGERY TO REMOVE THE CANCER FROM HIS LUNGS HE KNEW THE PAIN HE WOULD HAVE TO ENDURE AND HE STILL WAS SO STRONG ALL HE WOULD SAY IS DON'T LEAVE ME MOMMY. I WOULD GO INTO THE OPERATING ROOM WITH HIM AND HOLD HIM UNTIL HE WAS ASLEEP. HOW TERRIBLE IT WAS TO LEAVE AND NOW I WAS BREAKING MY PROMISE. BUT THEY WOULD COME AND GET ME AND HE THOUGHT I WAS THERE THE WHOLE TIME. HE WOULD HAVE TUBES COMING OUT EVERYWHERE. HE WAS SO STRONG I COULD NEVER GO THROUGH WHAT HE DID AND STILL BE HAPPY LIKE HE WAS. I GUESS BATMAN NEVER SHOWS HIS WEEKNESS. AND ADDISON PLAYED THAT PART SO WELL.
SORRY TO GET SO EMOTIONAL, I GUESS I SHOULD HAVE WRITTEN LATER. GOD BLESS YOU ALL AND REMEMBER TO GO AND TELL YOUR KIDS YOU LOVE THEM AND SPEND SOME QUALTIY TIME WITH THEM DON'T WAIT FOR LATER. LATER MAY NEVER COME.
MERRY CHRISTMAS AND HAPPY NEW YEAR.
DEB ASHLEY AND AUSTIN
ADDISON, WE LOVE YOU AND WISH YOU WERE HERE WITH US. I AM SURE HEAVEN IS THE PLACE TO BE AND SOMEDAY WE WILL BE THERE WITH YOU AND WE WILL ALL BE HAPPY AGAIN. MOMMY MISSES YOU FOREVER.
Tuesday, November 25, 2008 5:27 PM CST
Today is my sweet daughters 14th Birthday. How fast they grow. I am so proud of her, she has had more in her short live to deal with than many of us have all our lives. She has had some really hard years, but I can say that she has put up a good fight and is doing well. I don't know if I could have handle all she has.
I often think how hard it is for a mother to lose a child, wow what it must be like to be a sister who loses her brother. Her and Addison were very close. She was his little mother in minneapolis. She would stop playing with her friends and let him be with her. I don't know how my kids managed but they have come out of all and are really wonderful and caring kids.
I just wanted to tell Ashley how much I love her and how proud I am to be her mom. God has given me the three most beautiful gifts and the best part was he let ME be there mom. Thank you.
Deb
Addison, I love you and that will never change. I miss you and I hope you always look down on us and protect your broder and sissy. There isn't a day in our house we don't speak or think of you. xxooxxooxxoo
Tuesday, October 28, 2008 5:54 PM CDT
HAPPY HALLOWEEN EVERYONE!!!!!
I know its early but atleast I'm not late. We had a great trip to Minneapolis and thanks to all who we got to visit with. We stayed with friends from the Ronald McDonald House and it was so great to spend time with them. Thanks guys for letting us stay. We had a great time with you and can't wait to see you again.
I hope everyone has a fun and safe Halloween night. Have a spoooooky night.
Just to let anyone out there know I am selling Mary Kay and if you would like to order give me a call or email me(dltoivola@yahoo.com). I am giving 25 percent off your order for the next few weeks. So if you need any Christmas stocking stuffers let me know. Thanks
Deb, Ashley and Austin.
Addison our special angel, thanks for watching out for us. We know you are with us always. Miss you sooooo much. XXXOOXOOXXXOOO
Tuesday, October 14, 2008 3:28 PM CDT
Hello everyone,
Wow it is the middle of October. The months are flying by. I just wanted to let everyone know me and the kids are coming down to MPLS and would love to see all our friends. So if you are not busy this Thursday Friday or Saturday or Sunday let me know and we can try to hook up and see each other. Miss all our dear friends from the many years we spent in the cities. Just post a note and I will give you a call to meet. I will check the page all this week and hopefully I will hear from you. Or if you want email me at dltoivola@yahoo.com. The kids are getting so much bigger. Ashley is done with tennis and Austin just finnished football. Basketball will start before we know it and that will keep me busy all winter. Ashley is in the play at school and is enjoying it very much. I will sign off for now talk to you all soon.
Deb, Ashley and Austin.
The kids have a new puppy named Ginger she is so cute. She is a daschund mini. She loves to cuddle but this puppy training is for the birds. I wanted an old old dog.
ADDISON, LOVE YOU & MISS YOU SO VERY MUCH.
Sunday, September 7, 2008 9:09 PM CDT
Well, we are at a huge milestone, Addison passed away 5 years ago on Sept. 9. I still remember that day like it just happened. Ashley and Austin were so small and know they are getting so big. I wonder how tall would Addison be would his voice be changing. Would he have is front teeth. What would he look like. I can't imagine him with hair. Well they are question that will always be there.
The kids are loving school so far. Ashley is in tennis and Austin will start flag football soon. Austin just turned 12 and few weeks ago and Ashley will be 14 in a few months. Life is flying by and I still have guilt that our life is going on and Addison only got 4 years. How could we continue on when he didn't? I just thank God everyday for what he has given me and so thankful that he let me be Addison's mom WOW what a honor that is. May you all be blessed and always be grateful for what you have.
Deb, Ashley and Austin
ADDISON, I LOVE YOU SO MUCH JUST WISH YOU WERE HERE SO I COULD TELL YOU MYSELF. MISS YOU SO MUCH IT STILL HURTS. SOMEDAY WE WILL BE REUNITED AND THAT IS WHAT KEEPS ME GOING. LOVE, MOMMY
Thursday, August 21, 2008 3:14 PM CDT
HELLO EVERYONE,
WE ARE IN OUR FAVORITE PLACE.....MINNEAPOLIS. JUST VISITING OUR OLD FRIENDS AND SITES. WE LOVE BEING HERE. ALMOST FEELS LIKE WE ARE COMING HOME. SO MUCH HAS CHANGED HERE IN THE LAST YEAR BUT STILL CAN FIND OUR WAY AROUND.
WE ARE DOING SOME FUN THINGS SPENT A DAY AT THE MALL OF AMERICA. I THINK WE CAN SPEND A WEEK THERE. BUT A DAY IS GOOD FOR ME.
WE ARE IN GREAT SPIRITS AND VERY HAPPY. IT IS FIVE YEARS AGO THIS TIME WHEN ADDISON WAS GOING FROM A LIVER TRANSPLANT TO MAYBE A MONTH TO LIVE....WE KNOW WHAT HAPPENED AND THE TURN WAS SO DRASTIC IT WAS SUCH A ROLLERCOASTER RIDE....BEING AT THE TOP AND THE DOCTORS THINKING FINALLY IT WORKED...ME STARTING MY TESTING TO GIVE MY LIVER (PART OF IT) WITHIN DAYS WE STARTING DOWN THE DECLINE WITH THE GOOD PART OF THE LIVER EXPLODING WITH A NEW TUMOR AND NO MORE CHEMO OPTIONS TO STOP IT. MY POOR BABY WAS IN SO MUCH PAIN. I WILL ALWAYS HATE THE MEMORIES OF HIM SCREAMING IN PAIN. HIS TUMMY WAS A HUGE AS A NINE MONTH PREGNANT WOMAN. THE YELLOW EYES AND SKIN...PRAYING HE COULD PEE THAT DAY ANYTHING TO STOP THE MISERY. WELL, IT WILL ALWAYS HURT BUT WE LIVE DAY BY DAY AND BE HAPPY HE NO LONGER SUFFERS.
GOD BLESS YOU ALL FOR STILL BEING WITH US. SCHOOL STARTS SEPT. 2ND SO WE ARE GETTING READY FOR THAT. HOPE YOU ARE ALL DOING GREAT HAPPY DAYS TO YOU ALL.
DEB ASHLEY AND AUSTIN.
ADDISON, WE MISS YOU SO VERY MUCH/LOVE YOU BUNCHES/WE ARE GOING TO THE BATMAN MOVIE TONIGHT AT THE DRIVE-INN. I KNOW WE WILL FEEL YOUR PRESENCE THERE. HUGS AND KISSES MY SWEET BABY.....MOMMY
Sunday, July 6, 2008 8:47 PM CDT
HOORAY WE MADE IT THROUGH THE CELEBRATION OF THE 4TH. I HOPE YOU ALL HAD A WONDERFUL AND SAFE HOLIDAY WEEKEND. IT WAS OUR TOWNS 100 YEAR CELEBRATION SO WE HAD A WEEK FULL OF FUN.
WE HAD A WELL DESERVED FABULOUS WEEK FULL OF GREAT FUN GREAT FRIENDS AND FAMILY. WE HAD A PARADE, FIREWORKS, HELICOPTER RIDES, FLEA MARKETS, CIRCUS, A SPECIAL FOURTH OF JULY RUN/WALK (8.8K) KIDS GAMES AND RACES, WATERMELON EATING CONTEST, EGG TOSS YES, RAW EGGS SO DON'T MISS, STREET DANCES SO MANY THINGS ALL I KNOW IS IT WAS A BLAST. THANK YOU TO EVERYONE WHO WAS WITH US OVER THE FOURTH. THE LAKES ARE STILL COLD WE DO NEED A HUGE WARM UP SOME NIGHTS ARE STILL GETTING TO COLD 46 ONE NIGHT SO THE POOL WATER CHILLED RIGHT DOWN. TODAY WAS HOT SO IT IS HEATING AGAIN.
WE ARE DOING REALLY GOOD RIGHT KNOW SO I HOPE WE ARE ON THE UP (I BELIEVE WE ARE). GOD BLESS ALL WHO ARE STILL FOLLOWING US AND CARE ABOUT US. THANKS FOR SIGNING IN I STILL GO EVERYDAY AND CHECK REALLY LOVE HEARING FROM YOU.
HAVE A GREAT REST OF THE SUMMER ENJOY AND BE SAFE. REMEMBER TO GIVE THOSE KIDS A GREAT BIG HUG TELL THEM YOU LOVE THEM AS OFTEN AS YOU WISH YOU NEVER KNOW WHEN IT WILL BE YOUR LAST TIME.
DEB, ASHLEY AND AUSTIN.
PLEASE CONTINUE TO PRAY FOR ALL THE CHILDREN STILL FIGHTING FOR THERE LIFE. MARY (I HAVE WRITTEN ABOUT HER ALOT)HER AFP HAS GONE UP AGAIN THIS IS NOT GOOD.
MY SWEET ADDISON YOU ARE IN MY THOUGHTS DAILY I MISS YOU STILL EVERYDAY. THAT WILL NEVER CHANGE BUT I KNOW I WILL BE REUNITED WITH YOU WHEN THE TIME IS RIGHT. LOVE YOU MY SWEET BABY.
Saturday, June 14, 2008 7:02 PM CDT
Just wanted to get a quick update in for all the Fathers out there.
Just remember how special our dads are and I hope this day brings you much pleasure. My dad is very special to me. When Addison was sick my dad was there for me. Always would take the long drive down to see me when I needed him. I remember the day they said Addison would only be here on earth for less than a day. He said, "I should be the one going." I know he tried to make a deal with God Take me not my grandson. He hated seeing me in pain. But he never left that hospital room. He stayed during and after he died. He helped me clean out the hospital room. He helped me pack up all our belongings and took the uhaul home for me. Well, Dad if you are reading this I hope you know I will never forget what you did for me, I love you so very much. Happy Fathers Day.
To all the fathers out there, just remember how special your children are and give them a hug and tell them that you love them. Remember when they grow up they will be changing your diaper. Have a great day.
Deb and Ashley and Austin.
ADDISON, I LOVE YOU MY SWEET BABY. UNTIL I SEE YOU AGAIN MY HEART WILL BE HURTING. I'M SENDING YOU A HUG AND KISS....CATCH IT....MOMMY
Saturday, May 3, 2008 12:36 AM CDT
Okay, we made it through April and I am glad to say it is May. Today the sun is out and there is no snow in the forecast for this week. I don't know maybe between April and the weather it had me down pretty good this year. I am so looking forward to summer. My tulips are half up but with the amount of snow the last few weeks I think they will not be flowering this year. They sure do have a beautiful green stem so you never now.
I have been following so many children that it seems to be taking a toll on me. I really need to find a balance. I think I will share there sites and let you go visit them. There are so many special children but when I read how they are going on there make a wish and there doing this, it just breaks my heart. We, of course, never got our make a wish. It was planned and the kids new about and they were excited but Addison went the opposite way and died just before we were going to go. Don't get my wrong I am so thankful that those kids get there wish, they deserve it and more for all they go through. There is always that what if....It never goes away.
Deb Ashley and Austin
Thanks for sticking around.
Well, My dear Addison, you would have been 9. How tall would you be...What color would your hair be...How would your voice sound...Would you still want to be my sidekick (Or was I your sidekick)....Would you and Austin be the best buddies ever....Would you be Ashley's buddy...Would you love school...What sports would you play...Would you be the hockey player or would you be the race car driver...All questions I wonder. All I know is that sweet, loving little boy who couldn't wait to see his sissy and broder. The moments with you are priceless....NEVER TO BE FORGOTTEN.
I remember when you watch the batman movies you had to have the batman figures that matched the movie and the right car on the bed with you so you could reinact the movie with your guys and batgirl or catwoman. Oh, I love you and miss you so much the tears still flow even writing this. Love you my sweet baby boy.
Wednesday, April 9, 2008 1:07 PM CDT
HAPPY 9TH BIRTHDAY ADDISON!!!!!
FOR YOUR GOLDEN BIRTHDAY WE LET 99 BALLOONS GO TO HEAVEN...AND I KNOW YOU WERE THERE BECAUSE THE DOUBLE RAINBOW CAME OUT AND BROUGHT MANY PEOPLE TO TEARS. WE ARE MISSING YOU SO TERRIBLY. I BOUGHT YOU A NEW BATMAN TOY AND THIS SUMMER THE BATMAN MOVIE IS COMING OUT. I LOVE YOU SO MUCH IT HURTS EVERYDAY BEING WITHOUT YOU.
Thank you to all the people who still check in....no one signs much but the number goes up. I haven't updated in a long while but it is hard too. It seems my guilt is stronger for everyday without my baby. I have good days and bad. It seems like April 1st hits and I go numb same with Sept. Alot has happened and not all good. We have had alot of hard times. But let me tell you the good things...Nine years ago I went into the hospital to give birth to my third child. Addison, he was a miracle baby, first I was told I would not be able to have children and I was having number three. He was 9 lbs 1 oz. And he was 3 weeks early. He came out with red hair not alot but the tint was there. Ashley and Austin would fight over who would be able to feed him and hold him. But they would also get tired of the baby. As Addison got older he would follow his sissy and broder around, he loved them so much. It was one of the greatest days in my life. The birth of your children is unforgettable, pain and all. I still remember that too. Please sign in and say hi. I will update again soon.
Deb, Ashley and Austin
Please pray for Mary she is a sweet girl and is having surgery this week. The trail chemo didn't work and they are removing a tumor. She is waiting for her miracle.
HAPPY BIRTHDAY ADDISON!!!!! XXXOOO
Thursday, November 22, 2007 8:09 PM CST
UPDATE: NOV. 25, TODAY IS ASHLEY'S 13TH BIRTHDAY...HAPPY BIRTHDAY MY SWEET GIRL. A TEENAGER WOW TIME WENT FAST. ALSO TODAY, ANNA JANE FROM OK MADE HER WAY TO HER HEALING IN HEAVEN. SHE WAS SO SPECIAL TO MY HEART. I DIDN'T KNOW HER NOR DID I EVER MEET HER BUT SHE WAS SPECIAL, JUST LIKE ALL THE CANCER CHILDREN I FOLLOW. PLEASE PRAY FOR THE FAMILY WHO NOW HAS TO LIVE WITHOUT THERE PRECIOUS CHILD OR SIBLING ETC....
Well, It is Thanksgiving Day. I hope you all had a great day and remembered how thankful you are to have all the loved ones in your life. We are also thankful for so many things.
I haven't been able to update things were bad for awhile and when you thought they couldn't get any worse well they did. We are all just trying to make it through a day by day life again. We could really use some prayers. I can't get into details right now but we sure could use our wonderful caringbridge family. Today we must be thankful just to be alive so for that we are.
Please say some prayers for all our little friends that are also not doing so well. Mary she is alittle girl I have posted about several times. They need a miracle her AFP is continuing to climb. Anna from OK, is having pain and they don't know how much longer she will be on earth. Pray they have peace and many moment with her and she doesn't suffer. That was always the worst. The pain Addison had his last month or so. It was so awful.
I am going to sign off with a Happy Thanksgiving to all. Thanks you for all your support please stay with us awhile longer.
Deb, Ashley and Austin
Addison, Thank you for the sign...I knew it was you right away. I miss you so terribly. We had a huge halloween just for you I know that is one of your favorites. Gavin begged me to let him use your batman costume. I knew you wouldn't mind. He was so excited. We had alot of batmans this year. They all reminded me of you. Momma was a stick person. Hugs and kisses to you my sweet boy.
Sunday, September 9, 2007 9:14 AM CDT
Today it has been 4 years. WOW! I still remember that day like it was yesterday. Please keep us in your prayers today, it seems to get harder each year.
I am heading to sunday school I will be a sunday school teacher this year. Something new for me. Then we are heading to the cemetary to finish putting out our angels and batman toys. The kids painted angels for Addison and my mom. I will try to get up a picture of the headstone it is beautiful. I would love to redo it because I think I should have done some of it different but I love it all the same.
Thanks for you support and continuing to follow us. I see alot of people still check on us but no one signs on much. Please say hi it means alot. It means more now than ever. God is Great.
Deb, Ashley and Austin.
ADDISON, IT'S YOUR 4 YEAR HEAVENLY DAY. OHHH HOW I MISS YOU. I HAVE HAD LOTS OF SIGNS OF YOU AND THAT IS SO WONDERFUL PLEASE DON'T STOP. I AM HOPING YOU GIVE ME A PUSH IN THE RIGHT DIRECTION NOW THAT EVERYTHING IS CHANGING AND I AM NOT SURE WHICH WAY TO GO. I LOVE YOU ALL THE WAY TO HEAVEN AND BACK. CAN'T WAIT TO SEE YOU AGAIN. LOVE MOMMY.
Tuesday, August 21, 2007 5:13 PM CDT
UPDATE AUGUST 27th: Happy birthday Austin. I love you so very much. Today you are 11. Hope you have a great day.
Hope everyone is having a great summer. I feel like it went way to fast. I would like to have another couple of months. Oh well, next year. We are getting geared up for school. This always seems to be the hardest time of the year for me. Getting ready for school means....
Addison was ending his short little life. I become very sad and feel a complete loss from now through Sept... Please pray for our family we really struggle this time of year.
We have started down another journey, somethings are harder to do and others just seem like the right time to start. I, of course, have a harder time than the kids.
We went to mpls for a short visit, we haven't been there for about a year. It is always hard to come back home, the kids feel like staying there as well. We went to the RMH and things are so different they are remodeling some stuff and changing up things. It looked wonderful but really made us think that we are the past. The kids picture and art work was taken down so it is like we never lived there which is hard because we lived there for 2 years. But all great things must come to an end. We did make it to the hospital and ran into Addison's doctor, Dr. Weigel, she was wonderful, she spent alot of time with us and talked. They still have Addison's picture up and they think of him so that was great. Many of our nurses are gone. We miss all of them so very much. They are so dear to our hearts they will never be forgotten.
May you all be blessed and be thankful for all you have. It can be gone in just a second.
We did go to 35w bridges to see this horrible disaster. It is just terrible. Pray for these families who lost a loved one in this tragedy.
Deb, Ashley, and Austin
ADDISON, I LOVE YOU ALL THE WAY TO HEAVEN AND BACK AGAIN. I'M SENDING YOU HUGS AND KISSES. CAN'T WAIT TO SEE YOU AGAIN. I WANT YOU BACK WITH ME.....MOMMA
Monday, July 16, 2007 3:40 PM CDT
Wow!!! I haven't written in awhile. We have had some ups and downs but thank you for always hanging in there with us. I hope everyone had a great 4th of July. We had a big get together and then the parade just down from us. And the next day Austin did the kid parade and between him and his friend I decorated there bikes and off they went. They tied for first and second. Since there bikes were decorated the same. Then it was off to the kid races and it turned out to be a nice hot day. Austin won about 9.00 dollars. Ashley just watched. She did hold some little babies (friends of ours had just had a baby seven days old.)
The kids have been talking of there brother Addison alot lately I can always tell when something is on there mind. Sometimes there are scared of something and then all they do is talk about Aj. I think it comforts them. I am glad they still feel that way. They truly love him and miss him.
For me I am working at the church when needed and really enjoy it. I think of Addison everyday and always will. He is just to special not to. Thanks for hanging in there and please sign in and let us know you are still there.
God bless you all.
Deb, Ashley and Austin.
Addison, my sweet boy, I think of you so much it hurts. I love you all the way to you and back to me. I am blowing you a kiss....catch it. MOMMY.....
Friday, June 15, 2007 8:21 PM CDT
I want to wish all those daddy's out there:
HAPPY FATHERS DAY TO YOU.
I have really lost track of time. Do you know the saying "Nothing is going my way." Well I have had a couple of those months. It hasn't gotten better but there is always hope. I have been very blue too. I have been following about 10 or so little ones with the same cancer as my Addison and it just breaks my heart. I just hate when they have to say "The doctors feel they have done all they can." I have sat in that room, the room you never think you have to have a meeting in. Why? Why our babies. No, there are no answers. Just our faith in God. In everything that happens we get stronger in our faith and Thank you God for that because without you we have nothing. Well please remember and pray for these children:
Anna from Ok. who has only a miracle from God to find healing. Mary, Mike (his parents are just waiting for Mike to enter heaven, he has spent about 815 days in the hospital), Jake, Kira, BooBoo, Mathew, patrick, and brandon who just got home after his liver transplant. He is so cute and has a twin brother. He is doing well.
Ashley has started Tennis again and Austin is doing trombone and baseball this summer. Me, well trying to do things day by day. Thanks for checking with us. Please feel free to leave us a note.
Deb, Ashley and Austin
ADDISON, MY LITTLE MAN, I SO MISS YOU EVERYDAY. IT JUST DOESN'T GET EASIER MISSING YOU. I KNOW YOU ARE WITH GRANDMA AND I SURE DO MISS HER TO. I FEEL VERY ALONE SOMEDAYS. YOU HAVE MY HEART WITH YOU IN HEAVEN. I SO LOVED BEING YOUR MOMMY. XXXXOOOOO
Monday, April 30, 2007 9:18 AM CDT
SECRET DAY
“I'm keeping it a secret,” young Heather said as she knelt beside her
bed
saying her prayers. Mom was just outside her door when she over heard
the
conversation between her daughter and God.
It had been predicted that this day would be an average Spring day, as
far
as the weatherman could see. But his forecast was based on scientific
facts, not the prayers of a little girl. For by the end of this
otherwise
normal day, it would be a glorious one.
Mom and Dad were up early as usual, to get ready for work. Like any
other
day they fumbled in the morning fog that filled their minds. Like
robots
they went about their daily routine.
Reaching in to start the shower, Mom came across a note taped on the
wall.
Opening it she read, “You are loved!” printed in mixed colorful crayon.
Dad came walking in just then. “I found this in my sock drawer,” he
said.
They exchanged notes.
“Did you plan this with her?” he asked.
“No, I didn't. She obviously did this on her own,” Mom replied.
They both headed to the young child's room and upon entering they found
her
standing there, already dressed and ready for school.
This was quite a shock for it usually took a few attempts to get her up
and going.
“This is such a wonderful surprise,” Mom said standing there with the
two
notes in hand.
“What surprise?” Heather replied.
“The two notes you left for us,” Dad said.
Taking them in hand she said, “I didn't do this.”
“Well, who did?” Mom asked.
“I guess it is a secret,” she replied as she struggled to hold back her
laughter. “Today is Secret Day!”
“What's Secret Day?” Dad asked.
“I can't tell you...” she said.
“It's a secret!” her parents said in unison.
They all continued on their morning rituals. As always, Dad left for
work
first for his drive into the city took extra time. Mom stood outside
and
waited for the school bus before heading to her office. Kissing her
child
goodbye she watched as she boarded the bus. Climbing up the steps, she
turned and said, “Happy Secret Day, Mom!”
Throughout the day both Mom and Dad discovered more hand written notes
with
the same message neatly printed in crayon.
“I found one in my sport coat pocket, my briefcase, and I even found
one in
my shoe,” Dad said in a mid day phone conversation with Mom.
“Me too!” she said. “There was even one in the refrigerator taped to my
lunch.”
As the work day came to an end, Mom anxiously waited for her child to
be
dropped off. As the school bus door opened the driver leaned out and
said
“Happy Secret Day!” as she waved a small note in the air.
“Honey, the bus driver got one, too?” Mom asked of her child.
“I don't know, it's a secret,” she said.
The young child went to her room to change into her play clothes. Mom
headed to the phone to check for messages.
“Beep” the tape system sounded. “Mrs. Anderson, this is Heather's
teacher.
I just wanted to tell you that was a wonderful idea. Your daughter
touched
so many lives today, including my own. The Principal, lunch ladies and
our
janitor, Mr. Bennett also got one of her notes. “Happy Secret Day!”
Beep”
Just then Heather came walking in. “I am so very proud of you. What a
lovely thing you did for everyone,” Mom said.
The young girl paused for a moment and said, “But Mommy, it's supposed
to
be a secret.”
“Well, it will be. Just between you and I. But why did you decide to do
all
of this?” Mom asked.
“Mommy, yesterday in church, the pastor thanked everyone for the things
they did for him. You know his wife died. He said, I wonder if she knew
how much she was loved?” she said. “Then he talked about all the things
she did to help people, but she did it secretly and would always say it
was God.”
Mom stooped down and swept Heather off her feet. Hugging her with
pride, as
tears of joy washed down her cheeks, Mom said, “You are loved and
that's
no secret!”
“Happy Secret Day, Mommy!”
We are all called to love one another, to do things for others and not
boast of them.
I hereby declare tomorrow, “Secret Day” and ask that you find ways to
let
others in your life know how much they are loved and appreciated.
This story was emailed to me today. I thought it was beautiful. Just think if we did something nice for just one person. It is something like the pay it forward.
April is almost over and school is ending in one month. I hope everyone has a great May and I will update again soon. Please continue to pray for all the children with cancer, and the families that are dealing with the loss of there child. Ashley and Austin still struggling with there feelings of living life without there baby brother. It is something they will do forever just because time goes by it doesn't mean they don't struggling, pray for there strength in a world where most kids don't understand there pain. Thanks for always supporting us and praying for us. God is Great.
Deb, Ashley and Austin.
Addison, I know you sent me a message. It was loud and clear Thank you my sweet angel. I love you so very much.
Sunday, April 15, 2007 4:53 PM CDT
Well I need to update on some finally good news. Mary a sweet little girl with hepato. Her AFP has dropped and we couldn't be happier. We will keep praying for her and hope it goes down to a cancer free place. Under 10.
Thanks to everyone who signs in, I still look forward to reading from you. It has been a hard week for me and the kids. Addison's birthday was hard but we got through it.
I will update again soon.
Deb, Ashley and Austin.
Addison, we love you and Ashley says Hi.
Saturday, April 7, 2007 7:44 PM CDT
Tommorrow is Easter and I really wanted to wish you all a blessed day. Hope you have fun finding easter eggs or whatever you do on this day.
We are spending a quiet weekend doing spring cleaning and movie nights. Last night I thought it would be the right time to watch the Passion of Christ. Idt is that time of year.
Monday is Addison's 8th birthday. (Or would have been.) We will go to the cemetary and put up things and think of him. He was born at 8:09p.m. at 9lbs 1oz. He was three weeks early. But oh so healthy. He was a treasure and one of three great highlights of my life. I really have trouble putting my feelings down lately. Well Happy Easter and give those kids a huge hug and let them know you love them.
Deb, Ashley and Austin.
My dear sweet boy, I so love you. We will shed tears this weekend for you, because you are so special to us. You are never forgotten my baby boy. mommy
Sunday, March 18, 2007 12:06 AM CDT
UPDATE MARCH 26,2007: ANOTHER MOTHER AND FATHER AND SIBLINGS HAVE TO GO THROUGH THE PAIN OF LOSING A CHILD, BROTHER. WHEN WILL THIS MADNESS STOP. IT IS SO WRONG, THIS PAIN IS TO MUCH TO HAVE ESPECIALLY FOR THE CHILDREN. I KNOW THIS PAIN WAS ALOT FOR ME. BUT THEN I THINK OF ASHLEY AND AUSTIN EVEN NOW THE ISSUES WE DEAL WITH ARE ALL ABOUT THE DEATH OF ADDISON. SO MY HEART AGAIN FEELS LIKE IT DID ON SEPT 9,2003. PRECIOUS MATTY EARNED HIS ANGEL WINGS LAST NIGHT. HE HAS TWO BROTHERS AND THEY HAVE TO DEAL WITH THIS. IT IS BAD ENOUGH TO HAVE THE PARENTS DEAL AND TRY TO GO ON. PLEASE SAY A PRAYER FOR THIS FAMILY. THEY ARE A WONDERFUL KIND FAMILY. I WISH THIS WOULD STOP CHILDREN DYING BUT REALITY IS THAT IT WON'T. MAY GOD FILL THERE HEARTS WITH PEACE AND HELP THEM WITH THE PAIN. I STILL HAVE PAIN AND WE ARE APPROACHING WHAT WOULD HAVE BEEN ADDISON'S 8TH BIRTHDAY. WHAT WOULD HE LOOK LIKE, WOULD HIS VOICE HAVE CHANGED, WOULD HE STILL LOVE ME LIKE HE DID THEN. WOULD HE STILL WANT ME THERE ALL THE TIME. WOULD ASHLEY AND AUSTIN AND ADDISON BE THREE PEAS IN A POD. THEY ALL LOVED EACH OTHER IT WAS SO WONDERFUL TO WATCH. THE ONLY THING LEFT IS WHY? THIS IS A QUESTION WITH NO ANSWER. PLEASE KEEP THESE OTHER FAMILIES FIGHTING FOR THE CHILDREN IN YOUR HEARTS AND BE SO VERY THANKFUL EVERYDAY THAT YOU HAVE YOURS. GOD IS GREAT.
I haven't written in awhile. Sometimes I try to write and nothing seems to sound right. I have been following and sharing some of the children with you. So I will start today with:
Matty: He has been through so much. His pain has been very hard for them to control so they have put him on an ivy pump to help manage the pain better. Please pray for this family as they go through this journey with there son. Mom is super strong but please pray for her to continue to hold strong and find the peace. www.caringbridge.org/visit/matty
Anna: She is from oklahoma. This little girl melts your heart when you see her picture. They are going to start a new chemo this coming week. Please pray for a miracle. www.caringbridge.org/ok/annajane
Carepages is another site with cancer children, so go to www.carepages.com and then by each childs name I will give you there codename.
Mary: codename is Eisnor. Mary's AFP # has gone up and they have finally found where the cancer is. The problem is that it is not in a very good spot. They are going to do a few rounds of chemo and then try to scan again and see how it is located. We need to have it in a operable place.
Matthew: codename is GodBlessMatthew. His AFP is on the rise also. It went from 358 to 531. The AFP is a number that should be under 10 to be normal. When it goes up it means the cancer is growing. Please pray for Matthew.
Anna: codename is littlebabyanna. I am ending with anna because she is the good note. Her AFP is going down. Was 152 and now it is 32. Please let it keep going down. God is great and does do miracles. Thank you Jesus.
There are so many out there with cancer and other horrible problems. Just remember to love and cherish your children. There is nothing in life that it better than that.
Deb, Ashley and Austin.
We are doing fine and hoping for summer soon.
Addison, as always I so miss you and love you. Only wish I could hold you again. And hug you, tell you how much I love you. Someday I will see you and it will be the best day ever for me. I am throwing you a kiss I hope you catch it. My sweet baby. Mommy
Monday, February 5, 2007 8:25 PM CST
Update Feb. 20th: Laura passed away yesterday. She went peacefully. Please pray for her family. They have there journey to go forward on. It is not a easy one. Matty is in the hospital and they are trying to control his pain. Please help the doctors find something to help this wonderful boy. They want to bring him home and have some quality time.
UPDATE: PLEASE PRAY FOR LAURA SHE WAS SO WONDERFUL TO MY ADDISON. SHE HAS BEEN FIGHTING CANCER FOR SO LONG, BUT SHE IS IN THE FINAL JOURNEY HERE ON EARTH. PLEASE PRAY FOR COMFORT.
AND ANNA FROM OK. IS IN DELAWARE RECOVERING FROM SURGERY. PLEASE PRAY THEY HAVE REMOVED THE CANCER COMPLETELY. THEY ARE WAITING FOR SOME TEST RESULTS. ANNA HAS HEPATOBLASTOMA. SHE IS THE CUTEST LITTLE GIRL.
MATTY IS ON HOSPICE AND THEY ARE HAVING QUALITY TIME WITH THERE BOY..HE HAS BEEN IRRITABLE SO PRAY FOR COMFORT AND SOME GREAT MEMORIZE FOR THERE FAMILY.
My heart is so sad as I have found so many children with hepatoblastoma. What is happening to our children. The increase in the number of kids is going up. I hope they find a cure for this.
I have been updating on some of the wonderful kids I have found. Today I was saddened with more bad news. I know I don't know these families personally but I feel there pain and I know exactly how they are feeling. I have been to that place and would hope noone would have to do that but as life continues on more people enter the world of this monster. CANCER.....
MATTY, is seven years old and has had tumors removed from his brain, liver and had his arm amputated. All these things a parent does to save there childs life. They went in to have scans to make sure his cancer wasn't back in the brain. Well, they never did the scan of the brain, they were informed his lung tumors are large and more had developed. His Afp had risen....They have given Matty weeks not months to live. This is not news a parent wants but we deal with it and try to spend the rest of the time doing and being with our child. My Addison did not get to have much fun at the end it was laying in pain and screaming...No little one should have to suffer this way. Please pray for Matty and his family as they face this part of the journey. I hope Matty does not suffer like my baby had to. Sandy if you are reading this Thank you for sharing him with the world...I am here if you need to talk. please visit there site. www.caringbridge.com hit visit and enter Matty.
Please pray for Mary too. Her AFP went up again. Pray they find the cancer and can get it out. www.carepages.com
then enter eisnor.
I will post again soon and give you more info as I know it or you can go to there site.
There are so many other children out there. Please say alittle something for them all.
Please let me know you were here sign in and say hi.
Thanks Deb, Ashley and Austin!!
To my sweet boy Addison, I love you so very much. Mommy
Saturday, January 6, 2007 6:13 PM CST
HAPPY NEW YEAR TO ALL. Hope you celebrated the new year safe. We had a great new year with great friends. We had a great storm to bring in the new year, made for an exciting day. With 10 inches of that beautiful white stuff.
I have been trying to keep updated on these sweet children with cancer and it doesn't seem to get any easier to say. PrincessMia went to heaven today. She was so sweet, she did get out of the hospice house and was with her family which is always so much better. Please say prayers for her family. www.caringbridge.org/visit/princessmia
Matty is feeling great and doing great...They are not going to do ct scans and AFP test to continue to monitor the tumors. They are enjoying there time with him. Praying for a miracle. www.caringbridge.org/visit/matty
Laura came home from Hawaii and is alot of pain. They had a nice and quite family holiday. They are just trying to keep the pain in control. www.caringbridge.com/mn/laurajahnke
Mary is hoping for a low AFP test they will now tomorrow or the next day. www.carepages.com then enter Eisnor
Anna is feeling good. They are changing her chemo to giving it to her more often. She is indeed the sweet little girl and needs a miracle. www.caringbridge.org/ok/annajane
I will update and continue to let you know how they are doing. Please pray for them.
Ashley and Austin are doing great and playing sports. Thanks for checking in on us please sign in and say hi.
Deb, Ashley and Austin.
Addison, my sweet baby, Another Christmas and New Year without you. You are so missed and loved by us. I know you are watching over us. I wish I was watching over you right here where you belong. You are in the best place and someday we will be with you. Give grandma a hug and tell her we miss/love her too. Good night my Addison.
Tuesday, December 19, 2006 9:00 AM CST
update again dec. 28th: First, princess mia is home with her family and doing okay she has made improvement and they are still fighting for there little girl. The fight is never over until the last breath is over. I know this from experience. We the parents never lose hope and when the end comes there is comfort in knowing there are in a better place. So keep praying for this little one she is a fighter. Matty, I feel like he is a buddy, went to Texas I will let you know as soon as I know something. Annajane also went to Texas for some hopeful treatment options. They have a busy day today so please pray for them to find some plan. Let them find some good news in there trips to Texas. I will let you all know when I hear or you can go to there webpages and give them some encouraging words. God is great.
UPDATE:DEC.22ND, PRINCESSMIA IS AT THE HOSPICE HOUSE IN THERE AREA. SHE WAS HAVING SEIZURES AND IS NOT DOING VERY WELL. THEY ARE THINKING IT IS GETTING CLOSE FOR HER NEW LIFE IN HEAVEN. HER FAMILY COULD REALLY USE SOME PRAYERS.
ALSO, MARY EISNOR JUST RECIEVED HER AFP RESULTS AND THEY HAVE DOUBLED. THIS IS VERY BAD NEWS. ESPECIALLY SINCE THEY THOUGHT SHE WAS CANCER FREE. PLEASE PRAY THERE WAS A MISTAKE IN THE TEST.
First of all I want to wish you all a MERRY CHRISTMAS and HAPPY NEW YEAR. I hope it is everything you want it to be.
Me and the kids are doing fine and we made our first christmas card since Addison was here. We never wanted to do another because it would leave him out. (Actually, I didn't want to.) But I found away to have him in it. I will hopefully figure out how to put it on here for all to see.
Ashley and Austin are both in basketball and Ashley has gotten alot more aggressive and is doing great. Austin is a natural player can do the pivots and move like a pro. I know I am the mom. But I am so proud of them. I have fighting off the flu for many weeks now and it took a toll on me. I am very sick but hoping to feel better by Christmas.
I do want to update you on the kids I have been telling you about. They need lots of prayers.
Matty is feeling great and they have there scan right away in January. We need this experimental chemo to do something. He is such a fighter. www.caringbridge.org/visit/matty if this doesn't work go to www.caringbridge.org go to visit and then type in Matty.
Anna is going to Houston Tx to find some help they have run out of options and the chemo she is on now is not working. She is a lovely little girl so sweet. www.caringbridge.org/ok/annajane
Princess Mia. This little beauty is heartbreaker. She was just in the hospital and her cancer is in her lungs and pushing on her windpipe. She is not in pain and that we are thankful for. www.caringbridge.org/visit/princessmia
Laura just got out of the hospital so that hospice could get her pain under control. She got to go to Hawaii and have a vacation but had alot of pain on her trip. She is home as of today on a pain pump and hoping to keep the pain under control. They could use prayers. www.caringbridge.org/page/laurajahnke
Dillan is a survivor and doing great and a baby brother in November. www.caringbridge.org/ca/dillon
Mary is doing great also and is recieving her last dose of chemo. She had trouble walking but is doing alot better. www.carepages.com then type in Eisnor She is very sweet.
As for Jake's family they have done so much and are continuing to keep Jake very much alive. They have pay if forward cards they are passing out. Asking people to continue it on. This is the most wonderful thing I hope everyone gets it and does it. They also had some great news which you can read on there site. www.caringbridge2.org/la/jakeowen
May you all be blessed this holiday season and for us who have lost a child you are loved by many and we think of you all during the year and this season.
Deb, Ashley and Austin.
Tuesday, November 21, 2006 9:18 AM CST
UPDATE:
It is with great saddness to let you all know that my dear friend Janet Shober passed away yesterday morning. She was so wonderful to many of us during our stay at the Ronald McDonald house. She will be missed terribly.
I wanted to wish everyone a HAPPY THANKSGIVING. I am always so thankful for all the wonders we are given. Please take a moment out in your busy bird day to be thankful for your family and give those kids a hug.
I know I have asked alot of you that are still out there supporting us. There is alittle boy out there named Matty I have spoke of him often. He had his arm aputated and was doing a great recovery. They were just given some horrible news yesterday and could really use some prayers. They found is lungs have 15 new tumors that is right 15. This is devastating news to a parent. I have been in this position and let me tell you it is heart breaking. This special boy has had a liver transplant and many chemos that these are no longer options. They are running out of things to do. If you would like to go to there webpage it is www.caringbridge.org/visit/matty
Dillon is doing really good and mom just had a baby so they are celebrating. www.caringbridge.org/ca/dillon
Anna is the sweetest little girl. She is so fragile. The just took there wish trip to disney. She started another chemo. She was doing great while on chemo but when she stops the cancer starts all again. www.caringbridge.org/ok/annajane
Mary is doing great and it is her 4th birthday so please give her a big happy birthday. www.carepages.com then visit Eisnor.
The above children all have hepatoblastoma the same as my Addison. They are fighting for there lives I know the could all use encouragement and prayers. Thanks.
Laura is a wonderful young adult with cancer. She was fighting when Addison was in the hospital. She is not doing so well. There webpage said they have contacted hospice and are trying to get her pain under control. This family is so special. www.caringpage.com/page/laurajahnke
Thanks again for always being there. Have a great holiday weekend. To all the wonderful families that we have met over this journey my thoughts are always with you. The memorize of our kids together well, I am always thankful for that and for you being apart of our lives. May this holiday season bring you less pain and more smiles as we think of our children in the arms of God. We will always have the memory of all the days we had them with us. May God bless each and everyone.
Deb, Ashley and Austin.
To my sweet baby. I will again miss you but will be thanking Jesus for letting me be your mommy. Until I see you again I know Grandma is with you and that is the peace that keeps me going. I LOVE YOU MY SWEET ADDISON.
Saturday, November 4, 2006 6:13 PM CST
I just wanted to update and my computer is on the blink. It is funny how we don't think much of the computer until it doesn't work. I feel lost without it. I hope it gets fixed soon.
I hope everyone had a wonderful Halloween. Of course, Addison loved halloween but it never needed to be halloween to dress like batman. Everyday was halloween. I was cleopatra but everyone thought I was Crystal Gayle. It was fun but it was sooooo cold here. We have hit 40 today so it was beautiful.
Ashley will be 12 this month so if you would like to tell her happy birthday it is on the 25th. Thanks.
Austin is doing great. The first marking period ended and the kids had a really good start of the year. The holidays are fast approaching and I do love the holidays.
God bless you all and thanks for continuing to look in on us. Please sign in and say hello. I will update on some of the kids soon. I haven't had a computer in almost 2 weeks so I will do that soon.
Deb, Ashley and Austin.
Addison, I love you.......mommy
October 19th, 2006 12:10p.m.
Sorry I have had some problems with my computer but I think I am up and running good know. Matty had his surgery and is home and doing really good. Keep praying for his strength. I believe is started back to school today he asked his mom to go all day. Wow he is amazing. I can only tell from experience these kids have more fight in them than we would ever imagine was possible. They just want to be kids thats all. They totally trust us as there parents and they do it. I don't think as an adult we could endure half of what these kids do.
Please pray for AnnaJane she is been doing chemo for a month or so and they found out here AFP has gone up. That means the chemo isn't working and the tumor is growing. Her webpage is www.caringbridge.org/ok/annajane
She is a cutie.
I have been finding more and more kids with hepatoblastoma. I would like to tell you about another little girl named Mary. She just had surgery on her tumors and they are hoping she has none left. She is a beautiful thing. She is in the hospital recovering from surgery. www.carepages.com then you have to sign in and you can find her under Eisnor
Keep praying for these children and all the others out there they have illnesses.
P.S. Laura is home with her family and recooping. They are hoping to take her to Florida for a little R and R.
Ashley and Austin are having the best year. There grades are improving and they are doing well. Ashley had her annual eye appt. and they said her eyesight was so bad. She was 20/225 in one eye so she is wearing her glasses alot more now. Please pray they don't get any worse. She has purple glasses and they look great on her. My eyes have gotten better and I don't really need them any more except to drive. I would take her eyes and let her have mine if it was possible. Thanks for your support and love.
Don't forget to hold your kids alittle longer and never forget to tell them you love them. They are precious and we should never forget that.
Deb, Ashley and Austin.
Addison all my love to you my sweet baby boy. I do so miss you ever moment of everyday. XXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO
Thursday, October 12, 2006 9:33 AM CDT
It is friday at 9:30 or so p.m. Just wanted you to know Matty is our of surgery and there was no tumor in the elbow joint. So they removed his arm up to the elbow joint. This is want the doctors were hoping for. please visit there site. www.caringbridge.com/visit/matty
Thanks for praying for Matty. Laura is hoping to make it home this weekend. They are hoping for some quality time together and hoping to go to Florida for some R and R. UPDATE: MATTY WILL BE HAVING SURGERY IN THE MORNING (FRIDAY) AND THEY WILL BE REMOVING UP TO THE ELBOW JOINT. PRAY ALL GOES WELL AND HE HAS A QUICK RECOVERY. PRAY ALL THE TUMOR IS REMOVED AND THEY DON'T HAVE TO WORRY ABOUT THAT ONE ANYMORE. THANK YOU ALL FOR ALL YOU DO...
Well I think winter arrived alittle early this year. We have snow. It is cold but I can't complain because it will be colder before it gets better. I finally decorated for Halloween...Addison loved halloween even though he dressed up as batman everyday of the year he still loved it because everyone else dressed up with him. His last Halloween Austin was such a good sport and was Robin just for Addison. He made the best Robin ever. Of course, Addison ended up in the hospital which happened for all the holidays but we still had a good time.
It has been a hard week, Jake's passing hit me really hard and I of course relived Addison's last weeks all over again. People wonder why do I keep checking on these kids and put myself through this over and over again. It is like most of our lives who have been affected by this cancer with children we are the only ones that know how we feel and cope with this. I hope I do it so I can support and give my love and strength to help like all the families that did it for me. There will always be new kids and families that will battle the beast. I want to be there for them. It will always hurt but that is life.
Please continue to lift Jakes family in prayer. www2.caringbridge.com/la/jakeowen
Know we must talk about Matty he is a wonderful boy who also has Hepatoblastoma. He tumor in the wrist has moved all the way to his elbow. The are going to do an amputation of the arm tomorrow (FRIDAY). Please pray for a safe surgery. He also is lossing blood and the haven't found a bleed so they are not sure what is happening there. I know Addison had a bleed to and the determined it was the tumor eating the blood. Which could be possible with Matty's tumor getting bigger. He also has some tumors on his lungs and the doctors are not sure what will happen there yet. The tumors are where they removed some before. So they can't keep cutting the same part of the lung. You can visit him at www.caringbridge.com/visit/matty
Laura J. is a young lady I have talked about before she was so good to Addison. Her friend learned how to play the batman theme on his guitar and they came to the hospital and spent a few hours with us and he played batman for Addison. Addison loved ever minute of it. Laura is going through her radiation and is hoping to go home tomorrow to be with her family. She has had a hard fight. They doctors have said she should have a few months with her family. God can work miracles and we have been witness to many.
Thank you for your continued support. Please sign on we still love to hear from you.
Deb, Ashley and Austin.
Addison, mommy loves you forever. I know you are with Grandma and that makes me smile. Mom I love you so very much. Thank you for being my mom.
Thursday, October 5, 2006 9:10 AM CDT
update: It is with the a heavy heart that I just found out the Jake Owen Raborn went home to start his new life. Please pray for his family they are so amazing. Jake is a superhero and I know Addison has taken him under his wings. He was Addison's twin brother. Especially in the end. May we all be blessed to have meet one of these courageous fighters in our lifetime. They are given to us for a short amount of time and yet we learn more from them. Thank you God forgiving them to us even for a short time.
MORNING...I AM GOING TO TRY AND DO THIS AGAIN. I HAD A UPDATE AND HIT THE WRONG BUTTON AND EVERYTHING WAS GONE. JAKE HAD A ROUGH DAY YESTERDAY AND THE PAIN WAS BAD. HIS HOSPICE NURSE SAID SHE DIDN'T THINK HE WOULD MAKE IT THROUGH THE DAY. THIS WAS SO SHOCKING TO ME...MY HEART SINKS...I HAVE BEEN AT THIS PLACE WITH ADDISON AND MY MOM A FEW MONTHS LATER. HE IS SLEEPING RIGHT KNOW AND STABLE. THANK YOU JESUS...THIS FAMILY IS SO WONDERFUL IF YOU HAVE VISITED THIS SIGHT YOU KNOW WHAT I MEAN. THEY HAVE GIVEN ME STRENGTH. PLEASE PRAY WITH ALL YOUR HEART FOR JAKE TO HAVE HEALING HERE ON EARTH. I DON'T WANT ANYONE TO KNOW THIS PAIN THAT I HAVE... GOD CAN DO MIRACLES AND HE CAN HEAL THIS WONDERFUL BOY. HE DOES LISTEN TO OUR PRAYERS. IF YOU WOULD LIKE TO GO TO THERE WEBPAGE IT IS:
www2.caringbridge.org/la/jakeowen
Matty is another sweet boy who has hepatoblastoma. He is on is disney trip and is in alot of pain. He has a tumor in his wrist and it has gotten bigger since they arrived.
Matty will have some form of amputation when they get back. Pray for him.
www.caringbridge.org/visit/matty
Kris a huge thank you for the batman background. We love it and thank you from the bottom of our hearts. I will keep you all updated....please sign in and say hi.
DEB, ASHLEY, AND AUSTIN
ADDISON, I MISS YOU SO MUCH. I AM STILL WORKING WITH YOUR CLASS. I WONDER WHO YOU WOULD BE HANGING OUT WITH. THEY ARE A REALLY WONDERFUL GROUP OF KIDS. I THINK YOU WOULD HAVE FIT IN PERFECT. THERE IS ALITTLE GIRL WHO HAS A COCILAR IMPLANT...SHE IS REALLY SPECIAL. AND MOST OF THE KIDS ARE LOOSING THERE TEETH TOO. WHEN I WATCH THEM I WONDER WHAT YOU WOULD BE DOING THERE. HOW TALL WOULD YOU BE. I KNOW YOU WOULD HAVE BEEN THE CUTEST, BUT YOU KNOW THATS BECAUSE I LOVE YOU SOOOOOO....I KNOW HOW MUCH YOU WANTED TO BE LIKE YOU SISSY AND BRODER AND GO TO SCHOOL. I JUST MISS HAVING YOU WITH ME. I MISS HOW MUCH YOU LOVED YOUR MOMMY AND WANTED TO STAY WITH ME. I MISS HOLDING YOU AND KISSING THE BALD LITTLE HEAD. I MISS NAPPING WITH YOU. I MISS SEEING YOU PLAY WITH ASHLEY AND AUSTIN. I LOVE YOU BABY...MOMMY
Wednesday, September 27, 2006 2:22 PM CDT
UPDATE: If anyone knows how to make the image just be on the side please help me out. Jake is doing good. He is at home with all his Christmaween decorations. Keep praying for him to be healed on earth.
I know alot of you are so generous of your time and I wanted to update on Jake. They updated today and he is at home with his family and they were told the doctors were out of treatments for Jake. So they will call in hospice. I am asking for all those wonderful prayer warriors out there, We need God to do a miracle for this sweet sweet boy. It is God who can and will save his life. I am still believing it is a earthly healing. I will keep you all posted on him or else go to his web page.
www2.caringbridge.com/la/jakeowen
Matty is another super hero fighting hepatoblastoma. He has a tumor in his wrist and they were hoping for a surgery to take it out. They recieved bad news this week and he will have to have an amputation. They are taking there disney trip on sat. and then they will come home and start with that. Please pray for Matty.
www.caringbridge.org/visit/matty
Laura a wonderful friend to us and Addison has been fighting her cancer for so long. She is in Houston TX and they are going to start full skull radiation she has tumors and her vision is going down. They have given her a few good months with her family. She is such a great girl. Please pray for her. She has constant headaches.
www.caringbridge.org/mn/laurajahnke
Thanks everyone. Please drop us a line it means the world for us.
Ashley and Austin are doing great and loving school.
Deb, Ashley and Austin.
Addison we love you so much sweetie. I know that you are with us always. Kisses and hugs to you. Did you see my new Batman lights. They are for you. Mommy loves you forever.
Saturday, September 16, 2006 8:37 PM CDT
update sunday the 25th. Jake is off the vent and stable. Please continue to pray for this precious boy. He is a fighter and his family is so close. It is so wonderful. God is Great.
UPDATE SATURDAY NIGHT: PLEASE SAY LOTS OF PRAYERS FOR JAKE HE IS BACK ON A VENT (WHICH THEY ARE HOPING TO GET HIM OFF TOMORROW.) WHEN THEY TRIED TO REMOVE HIM THIS WEEK HE STOPPED BREATHING. THEY FOUND HIS BRAIN HAS TUMORS. IF YOU ARE NOT ABLE TO GET TO HIS PAGE GO TO www.caringbridge.com THEN GO TO VISITOR, THEN PUT IN HIS NAME. PLEASE WE NEED PRAYER WARRIORS THIS LITTLE BOY IS SO SPECIAL. THE MIRACLE IS IN GODS HANDS AND HE WILL LISTEN TO OUR PRAYERS. I JUST DON'T WANT THIS FAMILY TO HAVE THE PAIN OF LOOSING THERE CHILD. I DON'T WISH THIS PAIN ON ANYONE. I AM SO GREATFUL TO ALL WHO PRAYED FOR US. GOD BLESS YOU ALL.
Thank you for all the support and kind words. It is always a hard time of the year for us. It has been 3 years and it is not any easier than it was before. We went to the cemetary and put out our batman stuff. Please sign in and say HI..
I had left a few websites of children with the same cancer as Addison. I just have a huge favor to ask. There is a boy named Jake and he has really taken a special place in my heart. When you bring up his page it looks like it is Addison's twin brother. He had a procedure yesterday on his lung tumors and apparently air got in his heart and went in the brain. They had to wait to get a MRI to see if he had a stroke. Thank Jesus he didn't but they did find brain tumors. I would like to ask you to please take a few minutes out of your day and look in on this sweet boy and say a prayer for him. If you can't get through typing in the webpage please go to caringbridge.com and go to visit and type in Jakeowen. please pray for him and his family. www2.caringbridge.org/la/jakeowen
Thank you so much.
Here are the others with hepatoblastoma:
www.caringbridge.org/visit/matty
www.caringbridge.org/ok/annajane
www.caringbridge.com/visit/princessmia
The good news:
www.caringbridge.org/ca/dillon
www.caringbridge.org/fl/brandon
These are surivivors...HOORAY...
God bless you all. Please don't forget all the angels who didn't find a cure on earth.
Deb and family
Monday, September 4, 2006 9:27 PM CDT
Sept. 9th 06...Today is our 3 year anniversary. I am sick with strep throat and walking pneumonia. But I am feeling better so that is the good news. Thank you for signing in and letting us know you remember it really is so wonderful. Please pray for our strength we need it and God always answers. Bless you all and take a moment to remember my baby all my caringbridge families who went through this with us and we with you. Please pray for the other children battling there cancer and there parents who have to watch there children and all they must endure. God is great. Kiss those precious kids and never forget to tell them you love them. \Hello everyone,
Well the summer is ending and school starts tomorrow. Wow summer is ending. It went way to fast...I would like to have atleast one more month.
May you all have a wonderful first day of school...If you have started already I hope it is going great.
We are rounding down to year 3 without Addison....I think this has been the hardest for me. We have been through alot of changes this summer but as always we go forward. Please say a prayer for the kids...
I have been following some children that have the same cancer as Addison and if you would like to check in on them I will give you the address:
Jake is a cute little man and he is so strong and his family is wonderful: www2.caringbridge.org/la/jakeowen
Matty is another great boy and is in need of prayers. He is a wonderful strong boy: www.caringbridge.org/visit/matty
Dillon is from CA and is doing great his AFP is dropping this is a sign of the cancer dying HOORAY....: www.caringbridge.com/ca/dillon
The cutest little girl in Oklahoma (Anna) she is adorable: www.caringbridge.org/ok/annajane
These sweet kids have Addison's cancer.
One more young lady with whom we had the priviledge to meet when Addison was fighting. She has been doing her battle for many years and she was so wonderful to us. Laura is a magnificant young lady and has a great family. www.caringbridge.com/page/laurajahnke
Please sign in and let us know you are still with us. Somedays I could use a hello from you. Thanks
DEB, ASHLEY, AND AUSTIN
ADDISON, WE LOVE YOU SO MUCH...YOU ARE ALWAYS IN OUR THOUGHTS. I CAN ONLY WAIT FOR THE DAY WHEN I SEE YOU AGAIN. FOR YOU IT WILL ONLY BE A BLINK FOR ME IT ALREADY FEELS LIKE A LIFE TIME. YOU WOULD BE GOING TO FIRST GRADE TOMORROW...I REMEMBER HOW YOU WANTED TO GO TO SCHOOL LIKE ASHLEY AND AUSTIN. I LOVE YOU BABY. I AM SENDING YOU A KISS ALL THE WAY TO HEAVEN. MOMMA LOVES YOU FOREVER.
Wednesday, August 9, 2006 11:32 PM CDT
It is the 9th...Three years ago was when everything started to unravel.
Me, Ashley and Austin went to Mpls for the weekend and visited the Ronald McDonald House. They are the greatest people always make us feel like we are at home. I love the house and still love being there. Of course, lots of things change and we miss Janet not being there. We did have the honor to go visit her. She was very excited to see the kids. She is a remarkable woman and will always be part of our family. When you live at a house with all you go through...the (Workers)become your good friends and family. I will always be grateful for all they did for us.
God is Great
Deb Ashley and Austin.
ADDISON, I LOVE YOU AND KNOW WHEN EVER THE 9 POPS UP YOU ARE NEAR ME. TODAY I HAD 9 EMAILS. I CAN'T WAIT TO BE WITH YOU. MOMMY LOVES YOU ALWAYS.
Monday, July 17, 2006 8:37 PM CDT
UPDATE: My Auntie went to heaven where she will finally meet my Addison. She will also be with my mom. Mostly she will be without pain and surrounded by the people who love her and the rest of us will join her when our time is here. Thank you for your support. Please say some prayers for her children Mike Dave and Shelly. I HOPE EVERYONE IS HAVING A WONDERFUL SUMMER. IT IS GOING FAST ALWAYS...
I HAVE A PRAYER REQUEST AND HOPE YOU ALL WOULD HELP OUT ONE MORE TIME. MY AUNTIE CAROL HAS CANCER AND IS NOT DOING WELL. SHE WILL BE LIVING THIS LIFE BEHIND SHORTLY AND ENTERING ETERNITY. I HOPE SHE WOULD HAVE A PAINFREE REST OF HER DAYS HERE. I WILL BE DRIVING TO SEE HER TOMORROW FOR THE FIRST TIME SINCE SHE WAS AT MY HOUSE TO SEE MY MOM. THEY ARE SISTERS. I HAVE HAD ALOT OF GUILT THAT I HAVE NOT GONE TO SEE HER SOONER BUT HAVE HAD A DIFFICULT TIME SEEING PEOPLE SICK.
I RECENTLY WENT THROUGH PICTURES AND FINALLY PUT THEM IN ALBUMS IT HAD BEEN SINCE ADDISON'S LAST MONTH OF LIFE THROUGH NOW. THEN I REALIZED I HAVEN'T TAKEN A PICTURE FOR ALMOST 9 MONTHS. THIS IS NOT ME. SO OUT CAME THE CAMERA AND AWAY I HAVE BEEN GOING.
I HAVE BEEN CHECKING OUT THE CHILDREN ON SHARING THE LOVE. I DID FIND A LITTLE BOY WHO HAS STOLEN MY HEART. HE LOOKS LIKE MY BOY IN ONE PICTURE ON HIS PAGE. BUT THEY HAVE THE SAME CANCER AND HE IS DOING A NEW TREATMENT. HE WAS HAVING A HARD TIME BUT THE POWER OF BELIEVERS HAS MADE THIS LITTLE BOY A MIRACLE. I SURE HOPE HE IS THE ONE TO FIND THE NEW CURE FOR THIS ROTTEN CANCER. PLEASE PRAY FOR THIS LITTLE GUY...YOU CAN CHECK HIM OUT AT www.caringbridge2.org/la/jakeowen
MAY YOU ALWAYS SMILE AND SAY HELLO TO THE PEOPLE WHO PASS YOU. YOU MIGHT BE THE ONLY PERSON TO BE KIND TO THEM THIS DAY. GOD BLESS AND THANK YOU FOR ALWAYS BEING HERE FOR ME. PLEASE SIGN IN AND SAY HELLO...
DEB, ASHLEY, AND AUSTIN.
TO MY SWEET BABY ADDISON. ASHLEY AND AUSTIN HAVE BEEN TALKING OF YOU OFTEN AND TELLING ME STORIES ABOUT YOU THAT THEY REMEMBER. I KNOW YOU HAVE BEEN AROUND ME LATELY. YOUR NUMBER 9 IS ALWAYS POPPING UP IN MY FACE. THANK YOU..I KNOW YOU KNOW I HAVE BEEN FEELING BLUE. I SO MISS YOU SOMEDAYS IT HURTS SO BAD I DON'T THINK I CAN MAKE ANOTHER DAY. I AM BLOWING YOU A KISS ALL THE WAY TO HEAVEN I HOPE YOU CATCH IT. I WILL BE WAITING FOR MINE. I LOVE YOU MY ANGEL. MOMMY.
Sunday, July 2, 2006 11:53 PM CDT
Hi everyone, Just wanted to send out a big
HAPPY 4TH OF JULY to all. Please have fun and be safe.
Me and the kids will be close to home they are in the parade in town and we have fireworks so we should have fun. Then we have a special family coming to visit us. Kris Josh and Lucas. Lucas was Addison's best friend. I wish Addison was here to play with him.
This week I finally put my pictures in the album. They were the last month of Addison's life and the funeral needless to say the emotions were pouring out. It is a good cleansing. We have to remember that it is good to cleanse.
Just a small story for you. It was 8 years ago this month of July that my Addison was concieved. I was so excited it took a year to get pregnant. I was blessed with an angel. The doctors told me I shouldn't have gotten pregnant but I for sure wouldn't be able to again. I new this baby was going to be special. ( Not that Ashley and Austin weren't because they were too.) I had alot of female problems and went through two major surgery's to have one baby and that was only a 30/10 percent chance. I was blessed with three of the best children. God was so wonderful to me.
Deb, Ashley and Austin
ADDISON, YOU ARE ALWAYS IN MY THOUGHTS AND MY HEART WILL ACHE FOREVER. I LOVE LOVE LOVE YOU....
Saturday, June 10, 2006 6:27 PM CDT
Hi everyone, First thank you for all your support and words of wisdom. I have finally started to feel better. I have some bad days but they are getting farther and farther apart. Thank you Jesus.... and the prayers.
School is over and we are on summer break...I needed that. The kids are enjoying summer but we are still busy as ever. Austin is in baseball and Ashely will start Tennis on Monday and they have it everyday. She is also starting to babysit so she does that one day a week. She really likes it. Ashley is going to 4 H camp...It is for a week and she loves it. They have summer basketball camp too. I try to rest between runs. Have a great summer and I will keep you updated on me.
There is a little boy from MN at St. Judes Hospital doing an experimental treatment for Hepatoblastoma. Same as Addison. Please say alot of prayers for him. He is having a rough time right now. I would love to have him be the miracle we wanted. To find the new cure for this terrible disease. Thanks for always being there. God bless you all.
Deb and family.
Addison, I LOVE YOU....MISS YOU BABY.
Monday, May 22, 2006 10:17 AM CDT
UPDATE: Thank you for all the support. I just wanted to share the report from the docs. I have a lesion on the brain and my syptoms. They are looking at MS. They are not going to do anything for 2 years unless I have more syptoms. I have the blurred vision, muscle weakness, dizziness and so much more. I am finally able to drive a car again so I Thank God for that. They said the treatments are so much worse than this they would rather wait. So we wait. Seems like that is the number one thing with doctors. But I do understand. Again thank you and hopefully I have the mild case. Only time will tell. I also would love if you would pray for my dear friend JANET. She worked at the RMH. She was diagnosed with ALS. Lou Gehrigs Diesease. She has been a wonderful friend to our family. The RMH will never be the same without her. Janet if you are reading this: We love you and miss you so much.
Today I am asking for a prayer. I have been sick for a couple of months and I am getting a bunch of testing done today for MS. Thank you for always being there and supporting us. God bless you all.
Deb and family.
Sunday, April 9, 2006 11:02 PM CDT
Today is Addison's 7th birthday. It was a day of much sorrow and pain. Austin was with his dad for the weekend and Ashley stayed home with me. We went to church, it was good until a friend mentions: I found a roll of pictures and it was when we visited you at the Ronald McDonald House. There is a picture of Aj in his batman outfit. I forgot to bring it but I will get it to you. I was so excited to hear someone found a picture of him. But in the same breath the tears flowed out of me like a waterfall was turned on and the lever broke and I couldn't stop it. I cryed all the way home. Ashley helped me get Addison's birthday present ready and off to the cemetery we went. Every year on his bday we put out a new batman toy. We also got Aj a green glass butterfly wind chime and we brought out palms from church.
We spent most of the day there (my babysitter Brittney) went with us. She is so wonderful to us and the kids love her.
I don't know if anyone is still out there reading but if you are we could really use some prayers on this difficult and yet wonderful day.
It was seven years ago I gave birth to a baby boy who was named ADDISON JASPER. He weighed in at 9 pounds 1 oz. and was 3 weeks early. What a miracle he was. (I wasn't really suppose to have any children but with the greatest doctor in the world and many surgeries.) I had three. Addison was special because Dr. said after 2 kids my surgery would probably not allow any more. But Jesus had a plan. He gave me an angel to teach the world somethings we never would imagine. I still wonder why he didn't let my little man teach us longer and more. It was three years ago when we discovered a lump on his side. It was his tumor. We all now what happened next. I was in my doctors office alone being told my son had cancer. Those words will never leave me. I was horrified I didn't know what was next or what was going to happen. Addison was always smiling and telling me he was "dood".
May God Bless you all..
Deb and the kids.
Addison, today is your earth bday and we miss you so much. We only wish you were still here with us. I love you so so so so much my heart still aches for you... to hold and kiss you and tell you I love you. I so can't wait to be with you in heaven. Thank you for letting me feel you today with me. I know you are with me in a different way. I miss you my sweet child. I miss you....mommy..
Friday, February 17, 2006 1:51 PM CST
I hope you all had a great valentines. We are all doing good. The kids are doing great with basketball....They are having a great year with it. I think I can say honestly we are happy. We will always miss our little guy Addison, but he is with us and lets us know he is around and we love that. The kids are even happy when it happens they don't freak out any more they will just comment: THATS ADDISON, OUR GHOST."
Please pray and check in on a dear friend who is battle cancer again. She was so kind to Addison we care for her and there family. Her name is Laura and her webpage is
www.caringbridge.com/mn/laurajahnke
Thank you so much.
God is Great
Deb, Ashley and Austin.
ADDISON, WE LOVE YOU---MISS YOU...YOU ARE ALWAYS GOING TO BE MY BABY.
Wednesday, January 18, 2006 10:19 PM CST
Hope everyone had a great new year. We had a nice evening, I even made it to midnight and watch the New Year role in with the kids.
Today, is a very sad day. The kids had to learn yet another loved one passed on to there new home in heaven. Grandpa Bruce died today at around 3:00 p.m.. He was battling lung cancer. We will miss you grandpa. You were brave and loved and never will be forgotten. Austin said, I will call Grandpa I have the number to heaven. He is such a lover.
Please say a prayer for Dave and his Mom, they will have to take the next part of the journey without Bruce.
God bless you all and thanks for the love and support.
Deb, Ashley and Austin.
ADDISON, I LOVE YOU FROM THE BOTTOM OF MY HEART...I WISH I WAS WITH YOU OR YOU WHERE WITH ME...I MISS EVERYTHING ABOUT YOU. I MISS THE WAY YOU TALKED AND LAUGHED AND WOULD SIT WITH ME AND KISS MY CHECK AND TELL ME "LOVE YOU TO" I CAN'T WAIT TO SEE YOU AGAIN. YOU ARE NEVER FAR FROM MY THOUGHTS.
Sunday, December 25, 2005 10:01 AM CST
MERRY CHRISTMAS AND HAPPY NEW YEAR....
I hope everyone was visited by Santa last night. The kids were with Dave last night and I have them today. Ashley and Austin are doing good. We miss there brother Addison so much. I finished my living room and it is all Batman, I even found a batman ceiling fan. The kids are getting big which showed when buying gifts. They only got a few things and seemed to be okay with that. I always feel guilty they lost so much already and know I have to cut the gifts down to two instead of the big pile (and half never got used much). They are strong and great kids. I am so proud of them. We have added two new addition two the family. We have two puppies they are Lhaspo Apso-poodle mix. One is black with white named Jasper (after Addison Jasper) and one is brown with white markings named Charlie just because. I know Addison loves them because when they have been naughty and are in there kennels the doors will open and the dogs will come charging out. No one is by the kennel it is Addison.
Merry Christmas and to all my Ronald McDonald House families I miss you all and think of you often.
Deb and family.
Addison I know heaven is happy and you are singing and having a ball. We love and miss you everyday and that will never change. Until I get to hold you again I will ache for you. Mommy loves you.
Saturday, November 19, 2005 9:50 PM CST
How is everyone out there in internet land? Life is continuing to go forward here. Halloween was a huge success and the kids had a ball. They didn't want the parent involved so they went with there friends this year. Mom stayed home and handed out candy. I had about one hundred kids. We had a few batmans at the door.
Thanksgiving is around the corner. I have tried to think of things daily that I am thankful for. I have alot to be thankful for. Three wonderful kids even if Addison is not on earth, I am still thankful for the 4 and half years I had with him. I miss him daily and thank God I got to be his mommy. I have two great kids with whom miss there baby brother and talk about him alot. I have to tell you a story: Austin had swimming classes this year through the school it is new this year. My kids have been in the YMCA swimming classes since they were 3 years old. Austin couldn't pass the swimming test and was getting frustrated. So the second to last day he said I need to pass but I feel like I will drown on the back stroke. I said, before you get in the water say a pray to Jesus and ask him to please help you with your swimming test. He said that won't work. So I said well if you don't believe it won't happen. I said you could ask Addison to hold you up so that you don't drown. He said okay I will try. When I seen Austin after school he said Mom I prayed to Jesus and the asked Addison to hold on to me, quess what I PASSED MY TEST. He was so excited. I was too. I told him now do you believe if you ask God to help he will listen Yes mom.
Austin has not had any heart pains of late we are still in a waiting stage. Hope and pray it never happens again. He will start basketball soon. So I will keep my eyes open.
Ashley is doing great this year in school. Things have finally come together for her. She is growing up. She just finished volleyball and will start basketball soon. Her birthday is the day after Thanksgiving she is very excited, she will be 11. The time goes to fast.
May you all be blessed and know that you have been. Thank you for always being there for us. We love you and couldn't go on without your support.
HAPPY THANKSGIVING..
Deb and family.
Saturday, October 29, 2005 10:00 PM CDT
HAPPY HALLOWEEN!!!!!
Halloween was Addison's favorite holiday. I love it too. I hope everyone has a safe and happy halloween. Me and Ashley are super girl this year and Austin wanted to be harry scarry monster. We will miss Addison, he would have been batman again I am sure.
I have finally finished my batman room. I did the living room in our house. I love it. The walls are lime green with a yellow strip on the top of the wall. I have batman stuff everywhere. My couch is red I have a yellow lounger and 2 black chairs. One yellow stool and one red stool. Batman rugs, and the coffe table has Addison's favorite batman figures and car glued to the bottom table. I have found wonderful batman pillows for accent and all my outlets are done in batman. Batman ceiling fan and lamps and batman night lights, lava lamps lots of accessories. I will try to get some pictures up if I ever figure out how to use the scanner.
Happy Halloween again. Please be safe.
Deb and family.
ADDISON LOVE YOU SO MUCH. HAPPY HALLOWEEN I WILL BE THINKING OF YOU WHILE WE ARE TRICK OR TREATING. LOVE YOU BABY.
Wednesday, October 5, 2005 5:17 PM CDT
UPDATE: Finally, Thanks for waiting. It is always a waiting game. Austins echo was normal and the doctors want to wait until he has another episode before they do anything. I wish they would keep testing to find out what is going on. I think I will just keep bugging them. Austin is feeling good. He says he will let me know right away when he has another one. I don't even know what to call it. Thanks for the support I always appreciate it. Those of you who have emailed me THANKS I always love to hear from people.
Hi everyone.
I have a prayer request. Austin was in the emergency room on Saturday. He was having chest pains and his heart rate was 130 and it was missing beats. We are doing some testing. Tommorrow we are doing an Echo. Please pray for him, he is to young to have heart problems. I will let you know as soon as I find out anything. He told the doctor he has been having them for awhile but didn't want to tell anyone because he didn't want to be sick like his brother. I wish I could get in his head and know what he was thinking and feeling. It could be stress and this kids have had alot of that. Thanks for always being there for us. Please leave a message.
Deb and family.
Addison, I LOVE YOU SO MUCH.
Saturday, September 10, 2005 6:24 PM CDT
I tried to update all week. I couldn't. It has been a very hard week. Thank you to all who left a entry, a card in the mail, email, and phone calls. It was so very much appreciated. I needed it, so thank you again.
It is so hard to believe it has been 2 years since Addison went to heaven. This was an extremely hard school year because my sweet boy would have been in kindergarten. It was so sad to see all the moms and dads come for orientation with the little ones. My heart was crushed, yet was so excited to see those little people so excited to be there.
I went to work and was asked to do the kindergartners. I don't know if I will be able to handle it but I am giving it a shot. I love the kids and there are so sweet and special. It is tough for me to see this class and know Addison would be there classmate. I wonder who would he be with. Would they have excepted his hearing aids? Would they tease him? Would they care that he had no teeth? There is a girl in the class with the implant for hearing and I know Addison and her would have been great friends. She is the sweetest little girl.
Austin is having a tough time. Please say a prayer for him. He is so angry. I don't know what to do for him any more. He told me the other day Addison would still be with us if I wouldn't have stopped his medicine. My heart crashed with the thought Austin hates me because he thinks I killed his brother. Oh, God please help us.
Thank you all for staying with us please leave a message.
Deb and family.
Addison it is so hard to be without you. I am in so much pain being away from you. I love you and miss you so very much. My heart aches to see you and hold you. I will be with you someday.
Wednesday, August 24, 2005 10:07 PM CDT
The summer is closing down and another school year is about to start. Addison would have started kindergarten this year...Instead we will be remembering that 2years ago Sept. 9th he left us. My baby is gone.
I hope everyone had a wonderful summer. We are going to the twin cities for a visit and celebrate Austins birthday on the 27th. He will be 9. There is that 9 again. We should have a great time. We always love being in
Minneapolis brings us closer to Addison.
God bless you all. Thanks for the support. I truly appreciate it.
Deb and family.
Addison, I LOVE YOU!!!!
Wednesday, August 24, 2005 10:07 PM CDT
The summer is closing down and another school year is about to start. Addison would have started kindergarten this year...Instead we will be remembering that 2years ago Sept. 9th he left us. My baby is gone.
I hope everyone had a wonderful summer. We are going to the twin cities for a visit and celebrate Austins birthday on the 27th. He will be 9. There is that 9 again. We should have a great time. We always love being in
Minneapolis brings us closer to Addison.
God bless you all. Thanks for the support. I truly appreciate it.
Deb and family.
Addison, I LOVE YOU!!!!
Monday, July 25, 2005 10:32 PM CDT
Today Austin wanted to watch home videos. WOW. Memories--very hard to watch. The last one was of Sept. 7th 03. Two days before Addison passed away. It felt like yesterday I had to live it all over again. The first time I didn't cry. I wanted to but Austin was so upset about it I had to hold back. It amazes me how Ashley and Austin still talk and think of there brother. I know he will never be forgotten in this house. I know alot of you will keep him in your thoughts and hearts. THANK YOU.
I have to say Lucas (Addison's best friend from the hospital and Ronald McDonald House) With Kris and Josh, came and spent a weekend with us. We had the most fabulous time. Lucas never liked Batman when he was with Aj. Know it is all he wears and Loves everything about batman. He did his bedroom in batman and has toys. He also loves me so much when he sees me. I can't tell you how nice that is. He gave me the biggest hug every morning and when he left.
I haven't updated because nothing seems to be fun to write about. Me and the kids haven't had a vacation this summer but we spend alot of time together. Thanks for checking in on us. Hope you all have a wonderful summer and stay close to your family. Nothing is more important.
God bless you all. Thank God for everyday you have.
Deb and family.
ADDISON, I LOVE YOU BABY. I MISS YOU SO VERY MUCH. I KNOW YOU ARE HAPPY AND HEALTHY AND WITH GRANDMA. I WILL BE WITH YOU AGAIN. I CAN'T WAIT TO SEE YOU AND HOLD YOU SO TIGHT. MOMMY
Sunday, June 19, 2005 11:15 AM CDT
I always told myself I would never let my updates go to long. Well, I am only human. I didn't know what to say or right and I am sure people are tried of hearing how sad it is without my Addison.
He is always in my daily thoughts and I will never forget him and I will hurt and also have smiles of joy because he blessed my family and me for 4 wonderful years.
Today we are marking in our calender a holiday we are going to the BATMAN BEGINS movie. My brother Ed, Dylan my nephew, Ashley and Austin and me. We are dressed in our batman cloths and rings and jewelry and we are going for you my sweet baby.
Today, it is also FATHERS DAY. So Happy Fathers Day to you all and especially to all the Fathers who are dealing with a sick child. My heart is always with you. I have been reading alot of caring bridge sites and my prayers are with you all. To the Trimper family I am praying for Maddie and the boys always. Sometimes I can't write on the guestbook it brings me back to a place I don't want anyone to ever go. I will never forget any of the wonderful families that we meet. You are and always will be a part of my family. (Some have only been email family but you have been there for me through it all).
May you all be blessed and be able to know you are blessed. Love to you all.
Deb and family
Addison see you at the movies. We so miss and love you.
Sunday, April 10, 2005 7:52 PM CDT
Yesterday was Addison's 6th Birthday. It would have been I should say. Me and the kids went to the cemetary and put a batman and superman statue up and some solar lights. Spent awhile there and remembered my sweet boy. The kids sure do miss there little brother. Me, well its still heart breaking for me. I don't know if that will ever go away. Austin realized he has been alive twice as long as Aj and Ashley said I am almost triple the years. Wow there little minds sure do work. They are doing well and getting ready for the summer. It has been very stressful couple of months I will get into that later.
May you all have a blessed day. Please remember Aj for a second and wish him a happy birthday. Sometimes I get sad just thinking no one remembers him or the new people in my life won't ever get to know him. Thanks
Deb and family.
Addison, Happy birthday my baby. I love you and miss you soooo...... Someday I will be with you again.
Saturday, February 26, 2005 7:52 PM CST
Hello everyone, It has been along time and lots has happened. First I would like to ask a favor. I have a very dear friend, Noren, she had hip surgery and she is a cancer survivor. Please pray everything goes well and she gets well soon. Thanks. Noren we are in our daily prayers.
Tomorrow is the one year anniversary of my mom's death. It has been a difficult winter but we held strong thanks to you all and God most of all. Mom I love you and miss you so very much. Wish you and Addison were here with me. I know you are there together and that warms my heart. Can't wait for us to all be together again.
I did my first talk about cancer and Addison. It was a honor to be asked. The Christian school here was doing a penny drive for Leukemia. So they asked if I would talk about what our family went through and Addison's life with cancer. Addison didn't have Leukemia but they still wanted me to come. I talked with the third, fourth and fifth grades. I was so nervous but the older kids had great questions and asked alot of them. I also got to talk about the Ronald McDonald House. The school has a barrel and they saved pop tabs for the RMH. They followed Addison and did lots of prayers for him. I think that was helpful. Enough about that I just felt so priviledged to do it.
Ashley and Austin have kept me busy with basketball and birthday parties and all that good stuff. The kids had a beach party at school. The whole school wore shorts and made snow castles and ended the day with an ice cream social. It was a great day.
They also had a valentines party and as always tooo much candy. I hope everyone had a nice cupid day.
That is all for Feb. I will update again sooner than later. Thanks for all your support.
To all the friends we met on our journey with Addison. I just want you to all know I check in on you and miss and think of you all often. I have had a difficult time writing and signing in with you but my heart is always thinking of you all. I hope you know I will never forget any of you.
Deb and family.
Addison, I see your face shining down on me and sometimes I think your pictures are following me around. I so wish you were here and I was loving you with hugs and kisses. I will never be the same person. You have given me strength. I know you taught me so much. Just thinking of you helps me live on. I LOVE YOU FOREVER. Mom
Tuesday, January 25, 2005 8:56 AM CST
Somedays I want to write and find no words to fill the page with. I read about all the kids and the families we met on our journey with Addison. My heart breaks everytime one has a set back and it seems to make me relive Addison's last month in the hospital. We have lost to many children to this cancer and other illnesses.
Today I write with much saddness. My doctor in here at home, who to me saved Addison's life, found his cancer (put us in an ambulance to the U of M) then let those doctors continue to save Addison for 17 months. His son at the age of 16 was taken to heaven. He was on his way to a formal dance and in bad weather lost control of his car and well we don't need to say any more. I want to run to them and say I know the pain. Please let me help you. How can I help when my pain is still so strong. I think of my Addison everyday and always wish things would have been different. Please pray for this family for strength to go on. I know what your prayers have done for me. I thank you for always being there for us.
The new year is going good or okay. It seems to be the hardest time of the year for me. My mom was with us last year and we were doing our first without Aj. I know they are together watching over us.
I am working part-time at the school as a lunch aide. I like it and it seems to be just enough for me. They are really good about the kids and me missing when they are sick. I keep busy with both Ashley and Austin in basketball. Ashley has done so good this year. Last year was so hard for her to go and play but this year she is getting into it. She has made 2 baskets this year. She made the first score of the season. Last night they won 20-4. Austin is just practicing they have there first game at the end of the month. He is a good player to.
Well on a last note, to my family the Nashes, We have had some nice BITTER cold weather and you crossed my mind alot. I know you were thinking of us here in the tundra. I only wish you would have experienced the cold we had. It was 45 below some mornings. School was only canceled one day.
Remember to love those kids and your spouse unconditionally. We never now what the plan for our live is. God is Great. Let your love shine for all.
God bless you all. Thanks for being with us.
Deb and family.
Sunday, December 19, 2004 8:14 PM CST
WOW! It has been along time since I've written. I actually come every night to write and never seem to know what to write. All the first are over and know we are on the seconds. This is the second year without my baby Addison. It seems to be more difficult this year. I miss my son and I don't have a mom to talk to about it. It is a difficult time of the year and the pain its like a ton of bricks.
The headstone is finally in for Addison and it is awesome. He would have loved it. I will put a picture up soon. It is a black headstone with a batsignal in yellow in the corners on back and front. On the front there is a batman with the cape blowing in the wind. The back has the batmobile. The front also has Addison's picture. Oh, Addison my heart aches for you still.
I recieved a email and I want to share it with you. May you all have a wonderful Christmas and Happy New Year.
Twas the night Jesus came
and all through the house,
not a person was praying, not one in the house..
The Bible was left on the shelf without care,
for noone thought
Jesus would come there..
The children were dressing
to crawl into bed,
not once ever kneeling
or bowing their head..
And Mom in the rocking chair
with babe on her lap,
was watching the Late Show
as I took a nap.
When out of the east
there rose such a clatter,
I sprang to my feet
to see what was the matter..
Away to the window
I flew like a flash,
tore open the shutters
and lifted the sash..
When what to my wondering
eyes should appear,
but Angels proclaiming
that Jesus was here..
The light of His face
made me cover my head..
was Jesus returning
just like He'd said..
And though I possessed
worldly wisdom and wealth,
I cried when I saw Him
Inspite of myself..
In the Book of Life
which he held in his hand,
was written the name
of every saved man..
He spoke not a word
as he searched for my name,
when He said "it's not here"
My head hung in shame..
The people whose names
had been written with love,
He gathered to take
to his Father above..
With those who were ready
He rose without sound,
while all of the others
were left standing around..
I fell to my knees
but it was too late,
I'd waited too long
and thus sealed my fate.
I stood and I cried
as they rose out of sight,
Oh, if only I'd known
that this was the night..
In the words of this poem
the meaning is clear
the coming of Jesus
is now drawing near...
There's only one life
and when comes the last call,
We'll find out that the Bible
was true after all....
B -BASIC
I-INSTRUCTION
B-BEFORE
L-LEAVING
E-EARTH
Thanks for checking on us. I will update again soon. Happy Holidays.
Deb and family
Wednesday, November 24, 2004 9:41 PM CST
Sorry for not updating. I have been alittle lost lately. Hope everyone is doing okay. I want to wish everyone a HAPPY THANKSGIVING. I hope you all have a safe and happy, healthy holiday.
Austin is sick with his cough and stayed home from school all week so he wouldn't get pnemonia. He is on a steriod and atleast can breath. Those first few nights are alittle scary. He is weezing and can't breath.
Ashley is doing good. She was in volleyball and really enjoys that. She has a great teacher and is very caring with our situation. She is just what Ashley needs. Austin has a wonderful teacher this year too. Both are so caring.
I will update soon. Thanks for being with us.
Happy Birthday Ashley. We love you bunches.
Deb and family.
Thursday, September 9, 2004 2:17 PM CDT
Today is the one year marker. Today is a sad day for I must relive the worst day of my life over and over Like many of us have done. Today I mourn. Today I remember. Today I smile. Today I cry. There are so many emotions this day brings. Good friends and family are with me. Pain never far from me. But, I have been able to look back on Addison's entire LIFE on earth and remember the good things too. For us parents that lose we all know this feeling. We try to remember good things and all we see in our head is that day, that day it all left and was taken from us. The pain will always be with us it just gets managable. Or maybe it is that we can remember the good things of life, the things that made us smile. The days when we were all together and happy.
Today when I reflect on the year I think wow I made it through a year. I didn't think I would be able too. I will never forget Addison and I hope no one else does. I miss him and my heart still hearts daily. I know he is with my mom and with me. They give me strength and watch over me. My sweet little boy would have started school this year. He always wanted to go to school like his sissy and broder. Please lift us up in your prayers today and help us continue on. I know the power of a prayer I have seen what happens when people pray. That is how we have made it this far.
May God bless you all and thank you for all your love and support. Please kiss and hug your kids.
Deb and family.
Ashley and Austin are doing good in school. They have good days and bad. Today was a much harder day for them. We all know why.
Addison, I will never forget a year ago when you slipped away to be with Jesus. Today is your "Heavenly Birthday."
I wish you were with me. I miss loving you. You were my bubba....I love you so very much. See you in my dreams. I know you are our guardian angels.
P.S. Allison and Darren. I just wanted to thank you for the flowers they meant alot and were so beautiful.
Tuesday, August 31, 2004 10:22 PM CDT
The summer is coming to the end. School starts tomorrow and I could use another month off. This is a hard time of the year we are coming to the one year marker of one of the worst days of my life. The kids went to school 2 days last year and then our lives changed forever. Addison would have started early fives this year and he will never been able to do that. Or should I say I will never be able to see that happen. He always wanted to be like his sissy and broder. I truly ache for my baby. I still have a hard time wondering how can we continue life without him. God is always with us and helps us through.
Me and the kids went to minneapolis for our finally hurray. We had a fabulous time and did alot of visiting. We met up with some friends that have always been in our hearts, it was so wonderful to meet you this trip (Terese, Chris, Liam, Justin, Allison, and Jack). You are truly wonderful families and will always be in my thoughts. We did alot of school shopping and visited with our friends from Eygpt (Sagy, Rowan, and Hassaan). I cannot say enough about the Ronald McDonald House and how great they are when we visit. We just love being there and always feel like we have just come home. It will always be home for us. Thanks Janet, Paula, Mike, Tony, Brian, and the rest of the staff. We also got to see Lucas, Josh, Kris and Dave, Lucas is Addison's buddy. We spent the day at Como Zoo. It was the first time to go there without Addison but it was great to remember being there with him. And Lucas was so excited to see the animals that it was like having Aj there. Lucas is a batman fan know and talks about Aj his buddy alot. That is the greatest feeling. We also went to the Lipps's house and we went to the down town and looked at about 100 old cars. It is the greatest thing. If you ever go to N. St. Paul try to do it. If you like old cars it is amazing. Mary thanks for your hospitality and showing us around. Jimmy, Austin always loves to spend time with you, You are a great big brother to him. Kira, You are a great big sister for Ashley and we loved having you stay with us. Doug sorry you had to work so hard. The deck looked great. We ended our vacation with our cousins, Walt, Dede, and Owen. Thank you for a lovely day. We always love spending time with you all. Owen I hope your boo boo is better. I hope to see you all again really soon.
Unfortunately, We didn't get to see our family at the hospital. We miss you all and hope to see you next time. There is never enough time in a week it goes to fast.
We did get to the State Fair, it was the perfect weather. We went in the morning and it was already full. Janet, you are a great tour guide.
Please leave a note if you have time. May you all be blessed with health, happiness and love. Kiss your family and tell them you love them.
Deb and family.
Addison you are loved so very much. I know you are with grandma. I wish you were with me. Love you bubba xxxooo.
Wednesday, August 18, 2004 10:25 PM CDT
It is hard for me to write this month. This is the month last year my whole life started to unravel. It was the scarest days of my life. It still feels like yesterday and I replay it over and over in my mind everyday. I can't believe it has been 11 months and closing in on the first year without my so special and precious son. I have finally ordered his headstone and he has been along process. We had to first get a okay from Warner Brothers to have a batman and a batmoble on the headstone. They were so kind as to say yes anything we wanted. Thank you WB. I know none of them are reading this but I do so thank them for saying yes.
We are trying to get on with life and there are daily struggles we deal with. The kids are in therapy and it is so terrible what troubles them. Austin is having a hard time without a baby brother who he was so close to. He said to me the other day. "Mom, I am depressed." and started to cry. I asked what that meant and he said I am so sad that I don't have Addison with me anymore. Wow, blows my mind. We cryed together and then told stories about Aj and laughed with joy that Addison would give us. He was such a character. He could make you laugh and never say a word. For me not a day goes by without a tear and many thoughts of wishing. Ashley struggles with how to cope with the loss of her brother. She is at the age of not having coping skills.
The kids and I are heading to Minneapolis on Tuesday and hopefully will be getting in touch with lots of our friends and hopefully meet some of our friends (with whom we have never had the honor of meeting.) So if you are reading this and you can get some free time let me know. Chris I have been trying to email you and it keeps coming back so please try to get in touch with me.
May you believe in Jesus and know he is always with us. He never leaves us alone. We get tested and we must trust in God.
Please love and hug and kiss your wife, husband and children and always let them know how much you love them.
Deb and family.
Sunday, July 25, 2004 9:55 PM CDT
Ever wonder about the abbreviation A.S.A.P.? Generally we think of it in terms of even more hurry and stress in our lives. Maybe if we think of this abbreviation in a different manner, we will begin to find a new way to deal with those rough days along the way.
**********************************
There's work to do, deadlines to meet;
You've got no time to spare,
But as you hurry and scurry-
ASAP-ALWAYS SAY A PRAYER
In the midst of family chaos,
"Quality time" is rare.
Do your best; let God do the rest-
ASAP-ALWAYS SAY A PRAYER
It may seem like your worries
Are more than you can bear.
Slow down and take a breather-
ASAP-ALWAYS SAY A PRAYER
God knows how stressful life is;
He wants to ease our cares,
And He'll respond to all your needs
ASAP-ALWAYS SAY A PRAYER.
Remember what is important in your life and don't let it get away. Kiss your kids and let them know you love them. Thanks for continuing to support us. Pray for all the caringbridge families who have ill children and those who have lost. Our loss is so unbelievably painful but with you caring words you strength us and let us continue on.
May God bless us all.
Deb and family.
Addison you are loved and missed with ever breath we take.
Wednesday, July 14, 2004 9:28 PM CDT
We passed the ten month point. It was a hard day but I had my 20 year class reunion. Thanks to all the wonderful people who supported me that night. My reunion was so great I had the most fabulous weekend. I didn't forget you Addison I told anyone who would listen about you. I miss you so much. My classmates if you are out there THANKS....I would never have been able to have fun if you didn't help me. Craig and Darren I am so glad I got to see you both, I wish your wife would have been able to come.
May God bless you all and keep you safe. Take time for your family nothing is more important than them.
Deb and family.
Addison I love you and can't wait for our reunion together. I know you are near me and always will be. You have given me strength to live everyday. I'm sending you hugs and kisses from mommy. You are still my bubba. xxxxxxoooooo
Sunday, July 4, 2004 11:42 PM CDT
Happy 4th of July!!!!
It's another first without Addison. Two years ago we had just gotten out of the hospital after several months of staying in and we went on the paddleboat ride in Mpls. It was a blast and Addison with his bald head and mask on his face was so happy to be alive. Last year we moved into a new room at the RMD house and we went with a couple of families to the franklin bridge for fireworks. It was great. This year Ashley was in the gilbert parade and we spent the day at the park for kid games. They had races and all different things. Austin and his friend Mark went home with some money. They won the three legged race. Me and my friend Deb did the balloon toss and took second, unfortunately Deb got wet with the broken balloon. Then the top four winners had a balloon toss. I caught the balloon just in time to have it break in my ear and all over my face. It was the raccoon look for me. With the humid weather it felt good even if I looked terrible.
We had great friends come to the parade with us. Mike and Becky and the kids, Mary, Kira, Will, Paul, Beth and Mia (I hope I spelled that right.) Thanks for sharing the night with us. I hope everyone had a safe and happy holiday. Today we went to Carolines at the lake. It was to cold to swim but a wonderful day. We got to see cousins we haven't seen for so long, Owen, Ashley and Austin had a great day with you. Another great day. Thanks to you all.
Addison we thought of you all weekend and remembered the funny things you did. We miss you and my heart still hurts, I know grandma is with you loving you and hugging you. I would do anything to bring you back to us. Ashley and Austin talk of you all the time. It has been almost 10 months since we held you. I love you my batman.
May God bless you all and may you see the miracles of each day of your life. Don't forget to let people know how much you love them.
I have to share a story. Lucas, Addison's buddy. They came to our house for a visit and when they went home he was laying in the grass and said to his mom, See the whole in the clouds? Addison is looking at me. WOW. He remembers alot of stuff about Addison and what they did together. I think Addison watches over him.
Thanks for checkin in on us. I hope I don't wait so long next time. Sometimes it is hard to write.
Deb and family
Wednesday, June 9, 2004 9:58 PM CDT
It's been nine months today. I still remember the last day like it was yesterday. The pain seems to increase with each day. I wish no parent ever had to lose there child.
Addison was a bright light in our life. We talk about him daily in our house. Ashley and Austin love to remember him and they will bring him up out of the blue. I wonder what wonderful things he would have done in is life. He was a miracle and I was the luckiest person in the world. I was his mom.
When you are young and you hope to grow up and be a doctor or whatever. My dream was to be a wife and mother. I wanted lots of children. I was blessed with three of the greatest children.
Please let all the children around you be loved. If you want to help any child always remember the Ronald McDonald House of the twin cities. There are lots of children there that could use our help.
May you be blessed and see the miracles of each day.
Deb and family.
ADDISON I LOVE YOU WITH ALL MY HEART. YOU ARE MISSED SO MUCH. I WISH I COULD HUG AND KISS YOU AND HOLD YOU IN MY ARMS AGAIN.
Friday, May 28, 2004 10:10 PM CDT
Thank you all for being so patient. I am feeling better. Still having headaches but vision is good and the dizziness is lots better.
The kids are done with school they finished on Thursday so we are on summer break. I am ready for a restful summer. Austin is in baseball for the first year. Soccer is almost done. Ashley will be doing tennis for the summer.
Tonight me and Ashley are watching a movie and having a girls weekend. Austin is with Dave having a boy weekend.
Please be safe this memorial weekend and may GOD bless you all.
Give your kids a hug and kiss them. Tell them how much you love them.
Deb and family
Addison, we love you and miss you every minute of the day. Wish you were here with us. xxxxoooo Sending you hugs and kisses.
Saturday, May 15, 2004 10:03 PM CDT
I apologize for such along time since I updated. I have been very sick. I had a cold that turned into an inner ear virus. It left me dizzy and nausea. The doctor gave me motion sickness patches, the problem is the side effects are: blurred vision, dizziness, and drowziness. I got all of them. I had a difficult time seeing and driving etc... spent most of my time resting. Then I started getting severe headaches. So, I am still fighting this virus and headaches. I see only one of everything so that is better.
Enough of me.
Ashley and Austin have about 9 days of school left and they are busy with last day stuff at school. Austin is in soccer and having a blast with that. We went to the cities recently and the kids said they wanted to stay there forever. I think we just feel Addison is still there. We left our baby behind. It is hard to move forward without him.
Thanks for sticking with me I love you all and need you.
Please say a prayer for Lucas, Addison's buddy he is having his ct scans this month. Go say hi to them. www.caringbridge.com/mn/lucaskells.
We also lost another family member. Please pray for them in there most difficult time.
Deb and family.
Addison I love you.
Saturday, April 24, 2004 10:46 PM CDT
Just a short update tonight. I want to Thank everyone for all your support for Addison's birthday celebration. I loved all the pictures that you emailed me. I loved that you all sent out your balloons for Addison. I would have loved to have a birds eye view of the sky on good friday. We sent up 99 balloons on his birthday. I had bought 100 balloons and one balloon blew away. I thought oh no, I need to get another balloon. Then me and a friend said No Addison was born in 1999, 9 was his number, he was born on the nineth and died on the nineth. So 99 was the number.
This week was my birthday and of course, the first without Addison. It was a very sad day. The last two birthdays we spent in the hospital and I wish I could have been with all 3 of my kids this year. Ashley and Austin talk about Addison daily. He is in there thoughts so much. My heart is still so heavy it hurts. I miss his smile and the cute way he talked. Today for the first time we went by McDonalds and the kids said lets go see if Addison's picture is there so we did and to our surprise there he was. He was smiling at us. It is overwhelming to walk into McDonalds and see your son on the donation box. It is a honor to be Addison's mom.
Thank you for signing in the book. Please leave a note it helps us so much. May God bless each and everyone.
Deb and family.
Thursday, April 15, 2004 11:21 PM CDT
It was a hard week and yet so plentiful. I want to THANK all the people that supported the balloon release and signing in and leaving a supporting message. You need to know that your messages are so important for us.
Good Friday was Addison's 5th birthday and we let 99 balloons go. It was a wonderful site to see. Thank you for all the other balloons that went up with us. We then went to the cities for the holiday weekend and had a great support group there. It felt so good to be there. It was like going home and I sure needed that. I feel close to Addison when I am there. The house is full of all new people and that is sad because the kids cancer and all these other monsters continue on.
We went up to the hospital and seen so many nurses and the doctors and we were welcomed with so much love I hated to leave. The kids even said they were excited to be home again. Its sad to think that is more like home to us than our house. I think because all our memorise of Addison are at the Ronald McDonald house and the hospital on 5b. We feel like that is where we belong. The house staff was so great to us. For me it was the best medicine and I needed it alot.
We spent Easter with a friends and we had a great day. Thanks Mary, Jimmy, Kara and Sagy. It was wonderful.
Please know that we so appreciate all of the notes and support. It makes life so much better for us.
I will update again soon.
Deb and family.
Addison we love you and miss you. My heart aches everyday for you. I wish alot of things and I know that grandma is with you and for that I have some peace. I would rather me be with you or you with all of us. I think of you every moment of everyday and will forever. I know alot of people think of you and love you so much. I saw your picture at McDonalds for the first time. You would have loved that one. Until we are together again. xxxxxxoooooooxxxxoooxxoo
Saturday, April 3, 2004 0:00 AM CST
It's April already. Friday April 9th is Addison's 5th birthday and also his 7 month date since we lost him. I can't believe he won't be here for his birthday. Last year he had a huge Batman and Robin party. I miss my baby so very much. If anyone is in the mood let out a balloon for Addison on Friday. I would love to hear from you if you do it. I found Batman balloons at Walmart for us. They are perfect.
Please leave us a note, we could use the support. God is Great. Love your children and don't forget to let them know you love them. Don't assume they know.
I had my first dream of Addison it was different but I got to see him. It was actually a strange dream but I'll take it. I just want him home with me.
Deb and family.
Wednesday, March 24, 2004 9:11 PM CST
I have been trying to update, but have been having a problem with getting out anything that makes sense. So I will try to write again.
I have been so busy taking care of someone and juggling all the daily things. Now I have nothing to do all day. It is mind blowing to have so much going on and then nothing. I could use some prayers it has been a very difficult 3 weeks for me. I sit and think of how much I miss Addison. What we used to do together. I feel so lonely and sad. Then I think I can't even call my mom and talk to her, she is no longer there. Then I just sit and cry.
I miss them both. Addison would be five years old on April 9th. Good Friday. I can't imagine live without him. I need him so. I want to have him back. I want to take care of him.
Ashley and Austin are doing okay. There are the best and they have had a couple of hard years. Austin was home sick on Monday and Tuesday and he just wanted to watch home movies. So we did. He asked me, Would you have another baby brother for me. They loved Addison so much. I can't explain the special relationship Ashley and Austin had with Addison.
Deb and family
Please pray for our buddy Lucas. He is going in tomorrow to find out what they are going to do for him next. His cancer is still living. He has been on a medicine that was suppose to change the cancer cells into mature cells and it hasn't done that. This was Addison's best buddy.
Please pray for Amy, Laura, Saralee and Jessica. All the caringbridge kids and there families. There are so many, to many.
God is Great. Don't forget to spend alot of time with your kids and loved ones.
Tuesday, March 9, 2004 10:12 PM CST
Six months ago today I said goodbye to my baby. My heart still aches daily. All I have are the memories of Addison. I have been waiting for a sign, and waiting and waiting. My brother, Ed has been taking care of our dog, Batman. My mom was allergic so he couldn't live with us. My mom passed away on Friday, Feb. 27th. I went and picked up the dog on Sunday. I got my first sign of Addison and it was wonderful. I knew my mom was with him and they were happy. Tuesday we had my mom's funeral, it was really nice. Laura, she was the most wonderful singer. She did a grand job. Thanks to everyone for all you did. My second sign was at the cemetery. When we pulled up there was the purple bat, this is the marking for Addison plot and right there was where they put my mom. I knew for sure they were together. Thank you Jesus.
I have to say when looking back on life, my mom was in Mpls. visiting us in June. She went home after a couple weeks and had a horrible fall with much dizziness. She went through a tremendous amount of testing and they found she had a problem with the blood flow from her legs back to her brain and it would make her pass out. She had to get support hoses for her legs. She didn't get to see us until August when Addison wasn't doing so good. She couldn't walk without someone close to her and mostly holding on to someone. When she left that last night she didn't get to say goodbye to Addison because he was sleeping. He woke up about 15 minutes after she left and he asked where she was. I had to tell him she would come up in the morning to say goodbye. Well in the morning she didn't make it up because she was in the car, she was to tired to come all the way up. She came the last time the night before he went to be with Jesus. He woke up not long after she left and again didn't get to say goodbye. He was so upset. She never got to see him again. So I think they were never meant to say goodbye to each other. God new they would be together soon. My mom loved her grandchildren, all 14 of them. They all loved her just as much. Please pray for all these wonderful grandchildren that lost there grandma. Grandma is no longer suffering only the ones left behind. My mom was also a Foster Grandparent, and even those children loved her. The world has lost another great person.
Sorry for rambling. I have to admit I feel alot better after I write. I hope it makes sense. Glory be to God. For he does stand by us through it all.
I recieved this at my group and would like to share it:
THE MENTION OF HIS NAME
The mention of my child's name
May bring tears to my eyes,
But never fails to bring
Music to my ears.
If you are really my friend,
Let me hear the beautiful
Music of his name.
It soothes my broken heart
And sings to my soul.
author unknown
Thank you for all your support. Please sign in I could use some of your words.
Deb and family.
Addison, I love you my sweet precious bubba. I would love to hold you , kiss you, and hug you. I can only dream of that. You are always in my thoughts and always will stay in my heart. I wish alot of things but most of all I can't wait to be reunited with you again. I love you. mommy forever
Thursday, February 26, 2004 10:12 PM CST
UPDATE: Friday at 12:18 p.m. my mother met Addison at the gates of heaven. I know Addison was waiting for her. My mother had the most radiant smile, her heart was so strong. She was a special person. We love you mom forever. I know you had a feast and than played with Aj. We miss you and will never forget the great times we shared. The funeral will be at 12:00visitation, 1:00 for the celebration, on Tuesday in Hibbing at Doughertys funeral home.
I am so sorry it has taken awhile to update. It has been a week of alot of emotions. Mom is not doing well and will probably enter heaven soon. I can only say it is bittersweet for me. I am losing my mother and my Addison is gaining his grandma. I have great comfort in that fact. I am so glad my Addison will have someone close to him until I am reunited with him. I have the pain of again entering the depths of reliving Addison's death through my mom. Watching her only brings back every painful memory of watching Addison. I am totally exhausted and drained from the last 6 months.
Please pray for my mom's peaceful passing. She is on morphine and is alittle out of it. Confused and saying different things. She has had no fluids for 24 hours and the kidneys are slowly shutting down. She does put water on her lips but it is so little. She is weak and can no longer lift herself or move. It is hard to take care of someone who used to be the one taking care of you.
Thank you for checking in and praying for us. Please remember how important family is and never put things off for another day. It maybe to late. I would like to say a special thanks to the my classmates for leaving a message and writing to me personally on my email. It means alot. I don't have time to write to you personally at this time so please know I so appreciate all your words and care. THANKS.
Addison grandma will be with you soon. I wish I could be coming to see you but I must be here for broder and sissy. They so love you and miss you like the rest of your family. I love you with all my heart.
Deb and family.
P.S. I will update when I have any news. It will probably be in the next few days.
I also need to thank my Auntie Rosie for all you have done for me and continue to do. You have been wonderful. THANK YOU.
Friday, February 20, 2004 10:19 PM CST
It has been a long week and mom's health is going bad. I think the kidneys are starting to fail. She is about 65pounds and is so weak. She cannot stand on her own and gets tired just taking her ice with the pain medicine. She sleeps alot, her pain medicine has been increased twice this week and the oxygen went up twice this week too. She never complains about the pain. The pain is intense, everything she does hurts her, even to breath. Please pray for her to have a peaceful ending. This is like living Addison's death all over again. My heart is missing my son and knowing I will soon lose my mom.
Austin had a ear infection this week and I took him to the doctor and on the way into the clinic he said to me, "Mom, do you think I have ear cancer?" My heart just fell. I said NO but he didn't think I meant it so I had to talk to the doctor. The Doctor is the one who found Addison's tumor, and was so wonderful with Austin and explained to him. Thanks Doctor.
Ashley is doing good. She is going to a birthday party this weekend and is very excited. Basketball is almost over and they have had a good year.
Thanks everyone for checking in on us. Please sign in and leave us a note. Please pray for all the families who have lost there children and parents and loved ones. Please say extra prayers for Saralee she is taking some steps backwards. She has been vented for 58 days.
God is Great
Deb and family
Addison, mommy loves you forever. I miss you soooo much.
Saturday, February 14, 2004 10:08 PM CST
Hope everyone had a great Valentines Day. It was another first without Addison.
Last year on Valentines Day we were in the hospital and Addison had of course, Batman valentines and he handed them out to everyone on 5b. That was the day he told Lori (His nurse she was his girlfriend.) He even gave her a kiss on the check. He was such a lover. What I wouldn't do to be back there and have Addison back with us.
There will always be a emptyness without Addison. I have lots of joy when I think of him and look at pictures.
Mom is doing okay. We have added more pain medicine and she has been having swollen feet and her legs have numbness on and off. She never complains. She has had some moments of confusion. She is weighing in at 68 pounds today. She is still enjoying her sno cones. Please continue to pray for my mom, Ashley and Austin.
The kids are doing good. They had there Valentines day party on Friday at school. I made Chocolate suckers for all the kids but we had a nice day and they started to melt. The cold front is coming in tonight so always a day late and a dollar short. The kids had a ton of candy oh goody more sugar.
Thanks for continuing to check in on us we so love to hear from you. Please sign in and say HI.
As always love your kids and spend time with your family life is short so don't put it off. Tomorrow may not come.
Deb and family.
Sunday, February 8, 2004 9:59 PM CST
Time seems to go by and I am not sure were it went. Then at other times the day is sooooooo slow I wonder when will it end. Not one day goes by without a thought and many memories flowing through my mind of my little bubba, Addison. I was just emailed from a friend (Thanks Tessa)that the McDonalds have Addison's picture up and it is amazing. I think only in the mpls. area so far. Addison now everyone in MN will be able to see your smiling face looking at them. What an honor it is to be your mommy. I will forever love you and miss you. I will be with you again someday and until then hugs and kisses to you. I LOVE YOU.
My mom is doing about the same. She is eating nothing just crushed ice. Thanks Bobbi Jo for the idea of a sno cone machine we found one and she is loving it. She said it what such a treat. Mom weighed in at a mere 70 pounds yesterday. She is all bones. Please pray that she has a peaceful remaining life and goes in peace and no pain.
Ashley and Austin are the greatest kids ever and keep me laughing and having fun. We talk of Addison all the time and never forget him. They are doing good in school but would like to take a break from it.
May God bless you all and remember God loves us all. Thanks for staying with us and please sign in we love to hear from you all. I just want to say one more thing. Addison's birthday falls on Good Friday this year. I would like to have a special something if anyone has an idea please let me know. Thanks Have a great week. Don't forget to love your children and family. Show them, hug them, kiss them and tell them you love them.
Deb and family
Monday is the 5 month anniversary of Addison's death.
Saturday, January 31, 2004 2:30 PM CST
A year ago today Addison had an absess so big they had to drain it. It was a horrible experience for him. It was a blueberry size on the top of his front teeth. Then we waited for his counts to recover so he could go into surgery and have them pulled. He was the bravest boy I have ever known. I miss him so very much. I still question how can we live our life without him.
He is still so alive in my heart. I love thinking of him and all the great times and even the scarey times. Atleast he was with us.
My mom is eating nothing and only having ice crushed and water. That has gone done extremely. She takes her pain medicine more during the day and night. She is in pain more and I hate that. She is so skinny I don't know how she can even lift herself up to stand. Just bones.
Ashley and Austin had a short school week since it was so cold they canceled school. Nash's if your still out there. I thought of you all week and if you think you were here in the could this winter has been 90% worse than last year. God gave you a mild winter. Hee hee. I know you miss our cold tundra.
Please pray for a few of our friends with cancer. Amy she is a lovely wonderful special girl to us. She has had some not so good news and needs prayers. Laura is doing her second to last chemo and needs our prayers. Saralee is doing better but still vented and good use prayers. There are so many kids suffering this monster. Thank you for all staying with us. We are so grateful for you all.
God is Good.
Deb and family.
Addison we love you!!!!!!!!xxoo
Monday, January 19, 2004 9:21 PM CST
I have been trying to update and feel lost for words. I am in a very difficult time and seeing my mom go through this terrible C word (Cancer) has me for a loss of words.
I so miss my sweet superhero. I can picture him sitting with me being goofy and silly. He was such a character. I have been going to grief support and the head person is so wonderful. I will share a worksheet she gave out at the last meeting. It is interesting.
That's Normal
If you think you are going insane.......That's normal
If all you do is cry....................That's normal
If you have trouble with the most minor decisions...That's normal
If you can't taste your food or have any semblance of an appetite...........That's normal
If you have feelings of rage, denial and depression...That's normal
If you find yourself enjoying a funny moment and immediately feeling guilty.........That's normal
If your friends dwindle away and you feel like you have the plague........That's normal
If your blood boils and the hair in your nose curls when someone tells you, "It was God's will"...That's normal
If you can't talk about it, but you smash dishes, shred up old phone books, or kick garbage cans down the lane..That's normal
If you can shre your story, your feelings with an understanding listener, another bereaved person....That's a Beginning.
If you can get a glimmer of your loved one's life rather than his/her death..............That's wonderful.
If you can remember your loved one with a smile....That's Healing.
If you find your mirrors have become windows and you are able to reach out to others who are grieving........That's Growing.
by Edith Fraser
I found this interesting. I have to say I have the best girlfriends in the whole world and I want to Thank them for standing by my side and never leaving me alone. THANKS. Thanks for always being there and helping me out with all you have done for me. I am so grateful for everyone that has entered my life. Some of you may not realize what you have done for me but just leaving a note on the guestbook. Some email me personally. The Jokes and Stories you have shared with me. Thank you it means so much.
Addison I love you and miss you with all my heart.
Please continue to pray for my mom and Ashley and Austin and me for the strength to do this all over again. I feel your prayers and feel strong but there is still a hard road to go down again for us. My mom has had stable days. She had another visitor her sister Carol who is staying with us for another week, and my mom's twin sister Rosie is also staying with us. We have enjoyed some wonderful days with them. It has been very good for mom to have her sisters with her. She has been preparing us for the final days and saying her goodbyes. Please pray she has a peaceful ending. She is very strong in her faith and she is still cracking jokes. The other day she stood up out of the wheelchair and I help her but she put her hands up and said, "Look no hands." She also told us when she gets to heaven the first thing she is going to do is EAT. She hasn't eaten any real food for over a month.
May God bless you all and may you find strength and happiness in the small things in life. Don't forget to hug your kids tell them over and over how much you love them. Don't ever let them wonder if you love them. LET THEM KNOW WITHOUT QUESTION. As always if you can take the day off of work and spend it with them.
Deb and family.
Please pray for our friend Saralee. She is stable but continues to need our prayers.
Friday, January 9, 2004 8:36 PM CST
It is hard to believe it has been 4 months today that we had to say goodbye to our sweet Addison. I miss him so much. I still wonder how a person is going to live there life without there baby. It's one day at a time.
Ashley and Austin are doing okay. They are both in Basketball and are doing good in school. I am so proud of them. They are great kids.
My mom had a so so day. She had to take pain medicine today and slept on and off all day. She had her twin sister (Rose) come for a few days and she really loved that. It perked her up and she had a good day. She still has her humor and we had some good laughs. That is what makes it all worth it. Makes it hard when she has so much pain. Thank you for all your prayers. Please continue to pray for my mom and the kids. Thank you.
Please pray for a good friend of ours. She was Addison babysitter and he really liked her. She had a bone marrow transplant end of Sept. She is in need of prayers. Her heart is doing somethings and they are worried about her. She has been vented for awhile. Please pray for her if you want to check on her it is: www.caringbridge.com/mn/saralee
Thanks.
Deb and family.
Addison it has been 4 months and I miss you so much. I love you bubba. I think of you everyday and I always will. I LOVE YOU......Mommy.
Monday, January 5, 2004 5:53 PM CST
Thank you to all who are still out there with us. We miss the sign in and messages but thank you for leaving a note.
My mom is slowing progressing downward. Today has been a really bad day. She did start on her morphine today so that did give her some relief. She is sleeping right know so I know the pain is not to bad. Please pray for my mom to have little or NO pain. This disease is so horrible. I just want my mom to have comfort and quality while here on earth. She is so wonderful. Yesterday she asked me to make her cauliflower and cheese and a good home cooked meal. (She hasn't eaten real food in 3 weeks). I made a meal but she wasn't hungry. She said the first thing I am going to do when I get to heaven is eat some FOOD.
Please keep my mom in your prayers along with Ashley and Austin as they have to see another close family member be sucked into this disease. They are the greatest kids. I am so proud of them. They didn't get to do much over Christmas break because I cannot leave my mom alone so I cannot take the kids unless someone comes over and sits with my mom. Thank you to my dear friends for helping out I couldn't do it without you. A special THANK YOU to the Perkos you have been so wonderful to me. I hope I can repay you for all you have done.
Deb and family.
TO my sweet Addison I LOVE YOU SO MUCH. My heart aches to be with you, touch you, talk with you and love you with lots of hugs and kisses. Your mommy forever.
Wednesday, December 31, 2003 11:15 PM CST
I just wanted to wish everyone a HAPPY NEW YEAR. It is almost the new year and I am still up. That is so different for me.
We put out luminarie candle bags that spell out AJ for Addison tonight. It was a year full of great memories and some very very hard days. I miss Addison so very much. I am so grateful for all the wonderful days 2003 gave to me with Addison so excited and happy. I would rather forget the days of pain and hardship. I would like to send out a big hug to all our friends that have lost there children this year. There are so many that have lost and we are thinking of you all. Some we have never met and yet feel so close to you. I pray for all of us to have peace and happiness in the new year.
My mom had a good day and that is wonderful. She has had several days of being very tired. Please continue to pray for her. I will update again in the next couple of days.
God is great.
Deb and family.
Addison we start the new year with you in our thoughts and wishing you were here with us. We LOVE you and Miss you sooooooooooooooo much.
Friday, December 26, 2003 10:06 PM CST
I hope everyone had a great Christmas. I want to thank all of you that sent cards and presents. We are so honored that you thought of us and remembered us during your busy holiday season. You all made our Christmas special. Thank you again. Please know from the bottom of my heart how special you are to me.
We missed Addison so very much. It is hard to go on with stuff without one of your children. First you must shop for Christmas and you have one less to buy for and all you can find is stuff for the one missing. Then you make all the goodies. Last year Addison helped me make my spritz cookies (we made them purple) he was always thinking of others. Purple is my favorite color. Then you open and when it is Addison's turn he is not there. It was a very different day. We watched the video from WCCO TV and the RONALD MCDONALD HOUSE video. I cryed to watch this little boy and the character he was and know I would not be able to go to the other room and watch him. I miss him so. I am not sure how one is suppose to live the rest of there life without there precious child. There is always a space in everything you do. I love you Addison and miss you so much. I wish we were together again. Your sissy she talks about you all the time and loves you so much. Broder loves you and miss you too.
My mom is sleeping alot and her is eating is very little. She is eating alittle Gerber baby food. She is having a hard time swallowing so that goes down nice. She doesn't like to complain. She tries to get through the pain without anything. She is very strong and has a great faith in God. He is bringing us through this and will lead us down this road. May you all have a healthy and safe new year.
Please spend time with your children and family. Don't let any misunderstanding stand in the way of being together. If nothing else look at this and know life for anyone can change in a snap of a finger. I thank God for the great life I had with Addison and all the great times with my mom. I cannot express enough go love your family with all you have. Spend time don't put it off. Tomorrow could be to late.
God is great just let him take over.
Deb and family.
Thank you for signing in it is so wonderful to know you are still thinking and care about us.
Addison I LOVE YOU WITH ALL MY HEART.
xxxxxoooooo
Til we are together again.
Wednesday, December 17, 2003 9:31 PM CST
Sorry for the delay in updates. We have had a busy week. My mom and stepdad have moved in with me and I will be taking care of my mom. She is progressing faster than they thought she would. Today Hospice has gotten involved and brought her a bed and wheelchair etc... I can only say going through hospice again. They are wonderful and so caring.
My moms breathing has gotten worse and she can not walk more than 10ft. She has lost most of her voice so she whispers but that is her voice.
Ashley and Austin love having grandma with them and seem to be handling this well. They are the greatest kids. I, of course, talk with them alot. Please pray for them as they have to endure lossing there grandma. They are frightened that I may die too.
Please pray for my mom to have a peaceful and no pain for the remainder of her life. Pray for me to have the strength to go through this.
Addison is forever missed and I think of him of daily and always will. I love you Addison and miss you so much. Thank you for all staying with us and please sign in and leave us a note. May God bless you all this holiday season.
Deb and family.
Tuesday, December 9, 2003 10:23 PM CST
UPDATE: The news is not good. My mom most probably has non small cell cancer. That is there thought Mom will not go through a biobsy. The tumors are 99.9 percent cancer Not curable. She is weak and would not be able to go through any types of treatment. She had no tumors 4 months ago and they are pretty big now. Please pray for my mom and all of us. I will give more details right know my heart is so heavy and I cannot go into detail.
Today is the 3 month of Addison's passing. It seems like yesterday and yet it feels like a lifetime ago.
I had wrote a journal on the 5th of Dec. which is funny because Dave was writing one at the same time so mine went right into the past journals. If you would like to read it is in there. I will try to update from there. I had been having a rough week. Lots of pain with the holiday upon us. I miss my baby so very much. I think of spending a life without him and it seems unbearable. Ashley and Austin will have there bad days and say sweet things that makes my heart break. The other day Austin said to me "I wish we had a time machine and we could go back to when Addison was still here with us." So do I. So do I.
We had another terrible blow to our family this week. Please pray for us as we enter another journey into the unknown. My mom called me this weekend and the doctors found a tumor on her lung the size of 2 golfballs. Me and my brother Ed are going to Duluth tomorrow to meet with the doctors. We will have more information then. My mom told me she is ready to go. She can't wait to be with Addison until I get there. This is very disturbing to me. I don't want to lose another loved one. Please say an extra prayer for us and for my mom as we find out what is going on.
Thank you for continuing to check in on us. I will let you all know what is happening after tomorrow. Thanks again. Take a moment and go hug and kiss your kids tell them you LOVE them.
Deb
Addison mommy loves you bunches and then some more. I miss you so much. My heart aches to be with you again.
Friday, December 5, 2003 10:29 PM CST
YOU HAVE "STUMBLED" ACROSS THE WEBPAGE DEVOTED TO THE "LONG STRANGE TRIP" OF ADDISON "BATMAN" TOIVOLA. HE WAS A VERY YOUNG HUMAN-BEING AT THE TIME OF HISS PASSING BUT CARRIED QUALITIES THAT MOST ADULTS RARELY MASTER IN A LIFE TIME.
FOR INSTANCE, WHEN AJ ENETERED A ROOM, THE PEOPLE IN THAT ROOM STOPPED WHAT THEY WERE DOING AND SIMPLY LOOKED AT HIM. THE LOOK ON THEIR FACES TOLD ME THAT THEY JUST SAW SOMEONE SO SPECIAL. CHARISMA, CHUTZPA, AND A GRACIOUS SMILE OPENED MANY DOORS FOR THIS LITTLE BOY. HE WAS MAGICAL!
WE HAVE BEEN HOME FROM THE RONALD MCDONALD HOUSE SINCE MID-SEPTEMBER. WE HAVE BEEN WORKING ON REESTABLISHING OUR FAMILY. THE CHILDREN ARE AT AN AGE NOW THAT THEY ARE QUITE AWARE OF THEIR ENVIRONMENT. NEEDLESS TO SAY, THEY MISS THEIR BROTHER SO VERY MUCH. THIS IS QUITE SAD.
AFTER SUCH A GRUELING NIGHTMARE THAT NEVER GAVE IN, IT IS AMAZING THE DIFFICULTIES THAT ARISE WHILE ONE IS TRYING TO HEAL.
DEB AND I HAVE FOUND, AS WITH OTHER COUPLES WE KNOW, THAT WE ARE CERTAINLY NOT ON THE "SAME PAGE" IN THE GRIEVING AND HEALING PROCESS.
DEB HAS FOUND A TREMENDOUS GROUP OF PEOPLE WHO SHE CAN TRUST WITH IMPUNITY. SHE ALSO HAS ENROLLED IN ANOTHER GROUP THATS MAIN PURPOSE IS TO WORK ON GRIEF.
I, ON THE OTHER HAND, HAVE ONLY RECENTLY FOUND THE HELP I NEED WITH THE PROFESSIONALS WHO WILL WORK WITH ME IN THREE DIFFERENT AREAS (ALL HELPING THE CULPRET GRIEF).
SINCE AJ'S DEATH MY ANGER, ESPECIALLY WITH THOSE I LOVE, HAS BEEN INTENSIFIED AND IT IS NOT EASY TO EVEN HAVE A NORMAL DISCUSSION WITH MY WIFE... WITHOUT AND ENSUING ARGUMENT.
I AM ALSO WORKING ON BECOMING COMFORTABLE AROUND RELATIVES AND FRIENDS. AFTER A PROFESSIONAL CAREER IN THE PUBLIC SPOT LIGHT, I HAVE FOUND THAT I REGRESSED FROM A PERSON WHO WAS IN THE MIDDLE MANY, MANY PEOPLE EACH DAY TO A RECLUSE.
AH, THERE IS SO MUCH PSYCHOLOGICAL "MUMBO-JUMBO" IN THE TYPICAL AMERICANS LIFE THESE DAYS.TAKING AN ANTI-DEPRESSANT AND EXPECTING TO BE MAGICALLY HEALED IS RIDICULOUS.
IT IS THE COMBINATION OF THE MEDICINE AND A FULL AND ACTIVE LIFE THAT MAKES THE NEEDED NECESSARY CHANGE. TAKE IT FROM ME. I HAVE SPENT THE LAST 5-YEARS TIED UP IN THE MENTAL HEALTH WHIRLPOOL.
STAY WITH ONE PSYCHIATRIST... ONE THAT HAS HIGH PROFESSIONAL STANDARDS AND IT WILL BE A SURE BET THAT YOU WILL BEGIN TO FEEL BETTER. IT IS IN THE CHOICE OF PSYCHIATRIST FIRST... FOLLOWED BY TAKING THE RIGHT MEDICATION. DO NOT FEEL LIKE YOU ARE A "WIMP" BECAUSE YOU TAKE ANTI-DEPRESSANTS. CONSIDERING, THAT 85% OF THE AMERICAN PEOPE HAVE HAD AT LEAST ONE TRIAL WITH ONE ANTI-DEPRESSANT MEDICATION OR ANOTHER.
AFTER ALL THE SUFFERING OUR FAMILY HAS ENDURED WITH AJ THE LAST TWO-YEARS AND THE PREVIOUS FIVE YEARS THAT WERE TORN APART BY MY DEPRESSION... I AM CONVINCED THAT THE MENTAL HEALTH ISSUES WILL BE CORRECTED AND A NEW AND EXCITING LIFE CAN BE REBUILT FOR THE ENTIRE TOIVOLA FAMILY. AS AN ASIDE, THE UOF M PSYCHIATRIST THAT WORKED WITH ME IS CONVINCED THAT WHAT I HAVE SUFFERED FROM MAY NOT BE DEPRESSION AT ALL.THAT IS ANOTHER STORY. DEPRESSION AND A.I.D.S ARE NOT "CATCHY".
AJ'S GRAVE HAS BEEEN KEPT UP. I SEE IT AS A MOSULEUM OF SORTS. THERE IS A SHOVELED PATH THAT TAKES YOU FROM THE ROAD TO HIS BURIAL SITE. ONCE THERE, AJ'S SPACE IS WIDELY CIRCLED WITH SNOW. THE INSIDE OF THE CIRCLE IS LIGHTLY COVERED BY SNOW. WE HAVE TWO 16TH CENTURY SWORDS PLACED IN THE THE GROUND AND CROSSED. AJ MAY NEED A GOOD SWORD AND WE HAVE ALWAYS PLANED "WORST CASE SCENERIO". BETWEEN THE SWORDS IS A PURPLE AND BLACK BAT. WE WILL BE ADDING APPROPRIATE AND COOL THINGS AS WE GO ALONG. THE HEADSTONE GOES IN PRIOR TO MEMORIAL DAY 2004.
WE ARE SO VERY PROUD OF OUR ASHLEY AND AUSTIN. THEY HAVE ENDURED AS MUCH PAIN AND SORROW AS ANYONE ON EARTH. THERE MINDS ARE CONFUSED. THEY ARE RECEIVING EXTRA HELP AT THE SCHOOL. WE DO NOT WANT THEM TO STUFF THEIR SADDNESS, ANGER, ETC. WE WANT THEM TO UNDERSTAND THE PRIVILEGE IT WAS TO BE WITH AJ AND THEIR ENTIRE FAMILY.
HAPPY HOLIDAYS COMMRADS. WE ARE SO PROUD TO KNOW YOU. LOVE TO ONE AND ALL!
PS
I DO NOT BELIEVE THAT PEOPLE WHO HAVE NOT LOST A CHILD CAN FULLY UNDERSTAND THE DEPTHS OF THE PAIN A PARENT IS CONSTANTLY IN WHO HAVE. WE HAD SO MUCH DIRECT SUPPORT DURING AJ'S ILLNESS. PLEASE DON'T FORGET US AS WE NEED YOU NOW MORE THAN EVER.
GODSPEED
DT
Friday, December 5, 2003 10:30 PM CST
I have been having a very rough week. It is the holiday season and it is lonely and so sad. I tried to christmas shop and had to leave the store it was just to hard. Nothing seems to be right. I should be looking for new batman toys and cloths along with all the other stuff. Have you ever been in a crowded place and felt like the only person there. I have been feeling like that. I feel like nothing will ever be right again. I think I should be getting our christmas pictures ready to mail. I don't know if I can. Do I put a picture from this summer so everyone can see Addison one last time. He will never be able to be apart of that. He will never have a school picture taken. I will never get to take another picture of him. How can this be right. How can we continue to live with this pain. I just don't know. I just don't know what to do or how to be. Please pray for us to have strength and peace.
Ashley had a birthday party. She wanted a batman party. It was alot of fun and yet I kept looking for my batman. He will never be/have another birthday. Batman thank you from the bottom of my heart for coming to Ashleys party. I will never forget what you have done for the kids. You are the best. I know Addison was looking down on you and thinking how great it was to have you at her party. Ashley wanted to have a batman party for Aj. Batmans mom and dad thank you for all you have done for us. We are so grateful for the love you have given us.
Austin is doing okay the kids are having trouble with
wanting to go to school. It is a trying time for all. We
will survive with time. Basketball starts tomorrow the kids are excited I would like to pass. More running for me.
Thanks for your continued support please drop a line I could really use some words from you.
Deb and family
Addison mommy misses you so much. I know you are in the best hands but I sure wish you were still with us. I think of you all day everyday. I miss you my sweet boy. I miss everything about you. I can't wait to see you again. We will all be together in heaven again someday. Until then I will think of you and keep you alive in my heart. I hope you like your batman tree. I love you soooooooooo much. Your mommy forever.
Thursday, November 27, 2003 10:27 PM CST
HAPPY THANKSGIVING TO ALL. I hope you all had a great day.
We had a different but good day. We honored Addison the best way we thought we could. We put up a 3foot christmas tree. Decorated with Batman ornaments and a few other superheroes. I found a batman stocking and we put Addison's batman toys around the bottom. It looks great. We also decorated a little pumpkin man in the batman costume of Aj's. It looks great. Ashley and Austin painted there hair blue, red and pink. They made a cake in the easy bake oven. They so miss there little broder.
It was hard to imagine Addison would never be with us for Thanksgiving again. Last year Addison had lung surgery on Ashleys birthday and had just gotten out of intensive care with a broken rib. His last Thanksgiving was in the hospital. I don't think he was out of the hospital for any holidays except Christmas Day last year.
I am thankful for many things but mostly that I got to be Addison's mommy. Addison taught me more things, especially what unconditional love truly was. Thank you baby. I miss you and love you so much. I am still praying to see you in my dreams.
We are ending the evening with a Batman movie. It is the one with Poison Ivy. Addison would always ask me to be Poison Ivy. I would have to blow my poison love fumes at him and he would fall in love with me. He was so great. He knew everything about batman.
May God bless you all and keep you safe and healthy.
Thank you all for praying for Mighty Max. He has gone to heaven to be with Jesus. He earned his angel wings on Wednesday morning. We are continue to lose to many children to this horrible disease. My hearts go out to all of you who have lost a child. Thank you all for continuing to support and care for us.
Deb and family.
Sunday, November 23, 2003 1:40 PM CST
WHEW!
OUR A.J. MUST HAVE HAD A GREAT PURPOSE HERE ON EARTH. MAN, TO TEACH SO MUCH AND LEAVE SO EARLY...
MAX... BYE, BYE...
THE RONALD MCDONALD HOUSE IS AN AMAZING PLACE. IT ACTUALLY HELPS TO BLANKET PEOPLE FROM THE INEVITABLE FOR MANY FAMILIES... THE DEATH OF THEIR CHILD. PLEASE KEEP PULLING POP TOP TABS... AND DUMPING CHANGE IN THAT THING AT MCDONALDS.
THERE IS NOTHING THAT I CAN SAY THAT WILL HELP YOU TO UNDERSTAND THE PAIN OF FIGHTING FOR YOUR CHILD'S LIFE, MAKE SURE THEIR COMFORTABLE FROM THE HORRENDOUS PAIN, AND, THEN, HOLD THEM AS THEY GO TO HEAVEN. FROM MY PERSPECTIVE... IT IS VERY DIFFICULT TO LIVE IN SUCH PAIN AS THE PARENT. (NOTE: DEBBIE HELD THAT LITTLE BOY IN HER ARMS WITH SUCH GRACE AND LOVE... I WAS SO HONORED TO BE WITH OUR LITTLE BOY AND HIS MOTHER AS HE LEFT US...)
HOWEVER, THERE IS A GREAT SENSE OF ENERGY IN TRYING TO REPAIR THE DAMAGE OF THE PAIN... THE ENERGY I SPEAK OF... CAN ONLY COME FROM PERSONAL CHANGE. WHY? BECAUSE WE HAVE ALL CHANGED THROUGH AND BECAUSE OF THIS...
THANKSGIVING IS A DAY TO FIND THANKS IN WHAT GOD'S WILL FOR US HAS BEEN FOR ANOTHER YEAR. I ENJOYED A DAY OF QUIET REFLECTION, BLOWING SNOW AND SHOVELING... TWO THINGS I LOVE TO DO...
BESIDES ALL OF THE USUAL THANKS ONE HAS AND IN VIEW OF OUR CURRENT MISGIVINGS, I MUST SAY HOW PROUD I AM OF THE AUTHOR OF THIS PAGE... MAMA DEB.
I CAN NOT GET OUT OF MY MIND THE LOVE AND INTENSITY OF COMMITTMENT MY WIFE HAD THROUGH OUT THE ENTIRE JOURNEY.
DEAR LORD, IF YOU COULD HAVE SEEN THE CONNECTION BETWEEN MOTHER AND CHILD... WHILE KEEPING THE REST OF OUR LIVES AS NORMAL AS POSSIBLE... YOU WOULD KNOW IN ALL CERTAINTY THAT THERE IS A GOD. NO QUESTIONS ABOUT IT... PERIOD!
I COULD GO ON FOREVER... ABOUT HOW PROUD I AM OF MY WIFE AND AUSTIN AND ASHLEY. WHEW! THEY HAD NEARLY TWO YEARS OF SHARING THEMSELVES TO THEIR VERY LIMITS WITH AJ ... AND WE ALSO HAD SO MUCH FUN. MAN... A TON OF LAUGHS AND FUN!
WHEN YOU HEAR OF A CHILD WHO HAS CANCER... PLEASE PRAY... AND THEN FIND A PRAYER FOR THE CHILD'S MOTHER. IF ALL MOTHERS WERE ALL LIKE DEB AAS-TOIVOLA... WE COULD BE THANKFUL FOR A NEAR PERFECT WORLD.
THANKS TO ALL WHO VISIT THIS SITE AND CARE SO DEEPLY ABOUT US.
PLEASE... PLEASE...PLEASE... HAVE A HAPPY THANKSGIVING. LOTS THAT WENT ON OVER THE LAST 365 DAYS DESERVES A PAUSE AND A THANKS.
THANK YOU.
Update Wednesday: It is a sad day for we lost another precious child. Mighty Max has gone to heaven. Please pray for Mike, Margaret and his sister Grace. Max was 16 months old.
UPDATE TUESDAY:
HAPPY BIRTHDAY TO YOU HAPPY BIRTHDAY TO YOU HAPPY BIRTHDAY DEAR ASHLEY HAPPY BIRTHDAY TO YOU. We love you Ashley
We are entering in on the FIRST holiday season without our precious Addison. We are missing him so very much. I can't imagine how painful it will be without him with us.
Ashley is going to be nine years old on Tuesday. It will be the first without her brother. We are going to have a party on Sunday after Thanksgiving for her. Thursday is Thanksgiving. Happy Thanksgiving everyone. We have no plans of yet. We try to keep it one day at a time.
I don't remember if I let you know but we do have our batman puppy and he is being house trained. He is doing good still has a few accidents but is getting better. He is a doxie (weiner dog)He was suppose to be all black but since we got him he has turned chocolate, white spots and very little black left. He is a dapple. Very cute. The kids love to carry him around and around and around. They try to take turns holding him. It doesn't take the place of broder but makes a good companion somedays.
We will try to make some new thanksgiving traditions this year with Addison being honored. I haven't decided how to do that but will do something. I will update the pictures soon.
As I read the past journals last year on Sept. 9th 02. Addison had a Ct scan which would determine if they would be able to do the liver disection. The test failed to show that information so they set up a MRI for Sept. 13th 02. Which put into the surgery of the liver. These two days are the passing of Addison and the day of his funeral. Of course, the liver disection was a failure because they went in and the doctor was horrified at what he say. We went all the way to July of 03 we were given the go ahead for the liver transplant. I would have started my testing. Well we all know what happened. Sorry to ramble. Somedays it feels good to get it out.
If I don't update before Thanksgiving have a great holiday weekend. We love you all for all your support. Please continue to pray for our strength and for Ashley and Austin. They are having a hard time without Addison. Please pray for Dave and me also. Thank you so much.
We have Mighty Max who is having a terrible time he takes a few steps forward and then more backwards. He could really use our prayers. Thank you so much.
Deb and family.
Addison we are sooooo missing you. We love you with all our being. Someday we will all be together again just like we should be. We are waiting for you to come in our dreams. xxxxxooooooo Mommy misses holding you.
Monday, November 17, 2003 12:10 AM CST
Hello to all who are still with us. Thank you for all your support. We are so grateful for you all.
We had a very memorable weekend. It was very overwhelming. We spent a weekend in Mpls. Friday we went to the RMH Gala. (That is the houses fundraiser.) It was a wonderful event. Don Shelby recieved an award for doing so much for the house and raising a ton of money for them. They showed a video and Aj was in it. It was so great to see him laughing and making faces. WOW...I of course, was crying and the kids they were in awe. Don Shelby, who is a news anchor on WCCO TV in Mpls. He gave the most wonderful honor to Addison. He accepted the award in honor of AJ. He even shed a few tears. This is a very overwhelming feeling to know Addison is still touching the hearts of people. I know he was a gift from GOD to me I was given an angel from GOD to raise for a very short time. He will life in my heart forever. I know Addison was so happy to hear the wonderful things Don Shelby said about him. I cannot put in writing what was exactly said just that it was the greatest gift to be there and hear that he cared about my baby and truly felt the pain of our family. I don't want to keep going on but it was so emotional and wonderful at the same time. If you ever want to give a donation to a wonderful charity PLEASE consider the Ronald McDonald House. You will help the families that have children with chronic/terminal illnesses. We wouldn't have been able to do it without the house.
We had to say goodbye to our friend Sagy she will be going home to Egypt this week. I will miss you Sagy.
We also got to visit with our wonderful nurses at the hospital. We sure do miss you all. Thank you for always taking time out to visit with us. Can't wait to see you all again. We were saddened to not be able to see everyone we had on the list to visit saddly the days went so fast.
God bless you all and please sign in on the guestbook. I still need to hear from you.
Please continue to pray for all the children. Mighty Max has made some progress it is slow so please pray for him. Please pray for our dear friend Amy she has gotten some bad news of her tumor it is growing. She is a bright and wonderful girl. She was so great with Addison. We love you Amy.
Thank you.
Deb and family.
Addison we love you so much. Please visit us in our dreams.
Wednesday, November 5, 2003 10:37 PM CST
The two month whatever I am suppose to call it. (Of Addison's death.) Is approaching. I am still trying to unpack but with each box I find something. I have found his hat which he wore daily. Whereever and whenever we went outside,with of course, his batman sunglasses. He so loved his batman stuff.
I still am trying to figure out what my life is suppose to be. Addison and I would sit up half the night on the internet and look for batman stuff. I still do it and wonder if I should get it or not. I just want to bring my batman home and live out life the way it was suppose to be. I do not like this new life, trying to be normal and get on with life. I don't have that precious baby boy with me. He never left my side. We did everything together.
As one little boy told his mommy, "How will Addison be okay without his mommy with him?" I have asked that same question. I probably should ask it this was, "How will Mommy be without her Addison?" I just don't know.
I hope that no one else ever has to go through this kind of pain. The pain of watching your baby dying in a hospital bed. Taking on a new face (one that doesn't look like your child.) Feeling there heartbeat for the last time, watching them trying to breath and knowing it is painful. I am haunted by those last few days and wishing I could see my healthy Addison and remember all those wonderful times we had together. They say that will come back in time. They say the pain will ease in time.
I know I have said this before but please listen to me. Take a day off work and spend it with your children have a family day together. We never know what will happen tomorrow. Time will fly by and you will wonder why you didn't do it.
I thank God everyday that he gave Addison 17 months for us to make some of the greatest memories. We did alot of stuff and that will be the greatest gift I will have. I had a son that was a superhero. He lived everyday to the fullest. He taught me what true unconditional love was. I will cherish every moment I had with him. God gave me that miracle. Thank you Jesus.
Kiss your kids, love them and hug them often.
Deb and family.
God is great.
Addison I LOVE YOU!!!!I MISS YOU!!!I LONG TO BE WITH YOU IN ETERNITY!!!!
P.S. Please continue to pray for all the children still fighting there battles. Pray for all the caringbridge children they really need all of our support. I know the power of prayer and it is POWERFUL. Mighty.Max is stable so please continue to pray for him. Thank you all for your love and support. We continue to need prayers and you all to stand by us. God bless you all.
Monday, November 3, 2003 12:48 AM CST
YOU HAVE REACHED THE CARING BRIDGE WEBSITE OF A.J. TOIVOLA.
BEFORE ANYTHING MORE IS SAID, I APOLOGIZE TO ALL OF YOU FOR USING THIS CARINGBRIDGE SITE, THE SITE DEDICATED TO OUR BELOVED ADDISON, AS A TOOL TO EMBARRASS MY FAMILY OR MYSELF. IT HAS BEEN A TRYING "COUPLE" OF MONTHS.
THIS SITE WILL RETURN TO IT'S PERPOSE AS A PLACE TO HONOR THE LIFE OF A LITTLE BOY WHO TOUCHED SO MANY.
A.J.PASSED AWAY ON SEPTEMBER 9, 2003 AT 1:15 PM. I CAN ASSURE THAT ALL OF THE 75,000 (PLUS) GUESTS WHO HAVE VISITED THIS WEBSITE HAVE MADE OUR LIVE'S EASIER IN SO MANY WAYS.
YOU GAVE US COURAGE, HOPE, AND A STREAM OF LOVE WHEN WE FELT THERE WAS NOTHING (ELSE) LEFT TO DO. WE THANK AND LOVE YOU FROM HERE TO THE MOON!
RECENTLY, MY SPIRIT HAS BEEN COMPLETELY FILLED WITH ANGER, CONFUSION, HATE, AND IRRATIONAL THOUGHTS AND BEHAVIORS. AS WITH OTHER TIMES IN MY LIFE, I EXPOSED MY IRRATIONAL ATTRIBUTES VIA THE WRITTEN WORD. YOU WERE EXPOSED TO MY "MAD-NESS" ON THIS WEB PAGE ON THE DATES: OCTOBER 22, 24, 26, 2003.
THE FIRST TIME I REREAD THESE UP-DATES (SINCE THEY WERE WRITTEN) WAS ON SUNDAY NOVEMBER 2, 2003. I WAS APPALLED, EMBARASSED, AND SHOCKED BY THE DISRESPECT I SERVED TO ONE AND ALL... PARTICULARLY MY FAMILY... ESPECIALLY MY WIFE DEBBIE.
THESE THREE (3) UPDATES EXPOSED TO YOU A PERSON WHO IS STRUGGLING TO FIND OUT WHO HE IS AND WHAT HIS LIFE IS ALL ABOUT. AFTER THE LOSS OF OUR "LITTLE-BOY", I HAVE BEEN CONSUMED BY SINGLE-MINDED AND SELFISH THOUGHTS AND BEHAVIORS. BEING SINGLE-MINDED AND SELFISH CAN CREATE AN INTERNAL EMOTIONAL "STORM" THAT HAS BEEN HARD TO DIGEST.
AS I READ MY WORDS, I WAS APPAULED BY MY HATRED, ANGER, AND USE OF PROFANITY. DEB AND I COULD CLAIM WE HAVE NEVER USED PROFANITY INFRONT OF OR TOWARDS OUR CHILDREN. NEVER! AS A PERSON WHO HAS SERVED THE CHILDREN OF MANY COMMUNITIES (THROUGH PROFESSIONAL EDUCATIONAL ENDEAVORS), I WAS/AM SORRY THAT I EXPOSED YOU TO SUCH A DARK SIDE OF MY PERSONALITY. I WISH I COULD PRESS A REWIND BUTTON AND CHANGE ALL THAT HAS OCCURRED.
WHILE I AM NOT A PHYSICALLY HARSH PERSON, THE WORDS I WROTE EQUAL IN THE DELIVERENCE OF PAIN. THE HARSH WORDS AND SARCASTIC PHRASES AIMED, PARTICULARLY AT MY WIFE, BAFFLE ME. HOW CAN ONE LOVE ANOTHER HUMAN-BEING SO MUCH AND STILL DELIVER THAT TYPE OF VERBAL ABUSE?
AT THIS POINT, OUR FAMILY IS GOING THROUGH THE HARSHEST TIMES A FAMILY COULD EVER IMAGINE. OUR GOALS ARE :
1. TO SEEK HELP FOR OURSELVES. (I CAN NO LONGER LIVE WITH THIS CONSTANT SENSE OF ANGER AND SELF-PITY. I LOVED OUR LITTLE-BOY AND CONSTANTLY ASSURED HIM THAT "PAPA WAS HERE TO PROTECT HIM"... I MUST REGROUP AND CONTINUE THAT ROLE IN OUR FAMILY)
2. TO SEEK HELP AS A FAMILY.
3. TO SEEK HELP IN REBUILDING OUR MARRIAGE.
OF COURSE, ALL OF THIS MUST BE DONE WHILE GRIEVING THE DEATH OF OUR SON...
ALL OF OUR IMPROVEMENTS WILL TAKE TIME. I KNOW, FOR MY OWN WORTH, I MUST REGROUP AND RETURN TO SERVING MY FAMILY AND PEOPLE (IN GENERAL). WE KNOW THIS WILL TAKE TIME. WE KNOW THAT THIS WILL TAKE PROFESSIONAL HELP. WE KNOW THAT PART OF OUR THERAPY WILL BE DONE APART FROM ONE ANOTHER.
IN OUR CASE, BEING APART DOES NOT EQUAL A MARITAL SEPARATION. I USED THE TERM SEPARATION IN THE PAST UP-DATES IN IRRATIONAL ANGER AND VINDICTIVE IGNORANCE TOWARDS MY WIFE. HOW, WHERE, AND WHY...?... WHY?
ALSO, DURING MY RANTS AND RAVES I SPOKE OF THE PAST ABUSE OF ALCOHOL. WHY? WHO KNOWS? I HAVE BEEN ABLE LIVE A LIFE OF SOBRIETY FOR OVER 6-YEARS. I AM IN CONSTANT SEARCH OF PEACE AND GRACE AS A HUMAN-BEING. AS YOU CAN SEE, MY GRADES AREN'T "UP-THERE".
I FOUND A PICTURE FROM MY BACHELOR PARTY ON SUNDAY. MY BESTFRIENDS AND I FOUND OURSELVES IN THE FAR NORTHERN PARTS OF CANADA. THE PICTURE SHOWED ME SMILING AND PROBABLY GIGGLING... AFTER CATCHING A FISH.
MY MEMORY OF THAT TRIP RUSHED BACK TO ME IN PIECES. ONE PIECE WAS THE THOUGHT THAT I WAS GOING TO GET MARRIED TO THE BEST GIRL ON EARTH. ONE THAT WOULD STAND BY ME, LOVE ME, AND GROW-UP WITH ME. THAT FEELING WAS /IS SO GREAT. I AM SORRY TO HAVE NEARLY OBLITERATED OUR FAMILY AND (ESP.) OUR MARRIAGE.
I APOLOGIZE TO ALL WHO HAVE SUPPORTED US AND HAVE SHOWN US GRACIOUS LOVE. I WILL NOT BE WRITING ANY UPDATES IN THE NEAR FUTURE... I HAVE A "BUNCH" OF OTHER WORK TO DO.
DT
PS-
AGAIN, I SINCERELY APOLOGIZE FOR THE INCORRECT USE OF THIS WEB SITE. MAY YOU FIND IT IN YOUR HEARTS TO FORGIVE ME!
GOD BLESS ONE AND ALL
Saturday, November 1, 2003 11:02 AM CST
Halloween is over. It was alot of fun and yet it was so very sad.
Austin had about the hardest time of us. He wanted to cancel halloween this year. I told him Addison would want us to go have fun.
I spent the afternoon at the school for the party's. It was alot of fun being around the kids. Sad because it was the first time I went to the school without Addison on my side. Our last year in Gilbert me and Addison were bumblebees. It was fun. Austin decided to be Batman for school and the hulk out trick or treating. I think he made a great choice. Ashley was so adorable as the bride of frankenstein. I was Cruela Devil and the little kids all loved that. We were trick or treating and the little ones would be yelling down the block Good bye Ms. Cruela. It was nice. I thought of Addison the whole time. He would have had a blast this year.
Thanks for checking in on us. We so appreciate all the support we continue to get.
PLEASE SAY A PRAYER FOR MIGHTY MAX. HE IS IN VERY BAD SHAPE AND NEEDS OUR PRAYERS.
Remember to spend a day with the kids and love them. Do something special with them. Let the laundry and cleaning go do it LATER. It is worth it. We never know what tomorrow will bring. Never put off what you can do today.
Addison showed me what the meaning of unconditional love was. I can only say it is a feeling that is so wonderful. I love you ADDISON. I miss you. I will never forget you.
Deb
Tuesday, October 28, 2003 10:33 AM CST
It is snowing and winter is on its way. If you are still reading in Kentucky. I thought of you all today and new you are missing the cold tundra. Hi Nash's, I am sending a big white wet snowball your way. I don't think I can throw it that far. I will think of you daily this winter.
Halloween is almost here and we are trying to get ready. Addison loved Halloween. He was in the hospital for Halloween. He, of course, was BATMAN. He would walk the halls of the hospital and the nurses and doctors would all pay so much attention to him. They were so great to the kids. Austin was Robin and Ashley was a rock star. This year Austin is having a problem making a decision of what to be. He bought the Hulk outfit but wants to wear Addison's Batman costume. Ashley will be the bride of frankenstein. She had a Halloween party on Sat. and she looked great.
They are adjusting to school slowly but surely. They have had to take in alot in there little lives. I hate that they have had to go through so much. I can only do the best that I can do. We miss Addison daily and talk about him all the time. Ashley is in volleyball and Austin will be playing basketball in a few weeks.
Thank you to all you support and love for our family. Please continue to pray for our strength and peace as our life continues on.
I put up more pictures Addison's first Halloween 1999. The kids in 2000. The last picture is from 2000 also.
Please pray for a few of our friends:
mighty.max-he is on an oscilator and retaining fluid along with many medical complications. He is an adorable little boy. He has a little sister named Grace.
Laura is another dear friend starting her second round of chemo this week.
saralee who is going through her bone marrow transplant.
All the children suffering from cancer and all other diseases.
Also the trimper family they have 3 children all with MLD. Two of the children are going through there BMT at the same time.
Thank you. Please forgive us for our mistakes.
Deb
Sunday, October 26, 2003 7:13 PM CST
HELLO AND WELCOME TO THE PAPA'S VERSION OF OUR FAMILIES COMPLETE AND UTTER NIGHTMARE/SELF-DESTRUCTION.
I KNOW OF DEB'S ATTACHMENT TO WRITING Y'ALL. HER INSIGHTS INTO THIS TRAGEDY ARE SO HONEST AND FILLED WITH LOVE.
BY NOW, MOST OF OUR READERS KNOW OF THE MARITAL SEPARATION DEB, I AND THE CHILDREN HAVE (RECENTLY) GONE THROUGH. SOME OF YOUR ADVICE IS INTERESTING. SOME IS FRO TEXTBOOK OUR BIBLICAL PASSAGE THAT IS SUPPOSED TO MAKE EVERYTHING "PEACHEE-KEEN". SERIOUSLY... THANKS...
A "HIT" TODAY INSISTED THAT WE BE INVOLVED WITH OUR CHILDREN WHETHER WE ARE TOGETHER AS HUSBAND AND WIFE OR NOT. AGAIN, THANKS.
THE DYSFUNCTION A CHILD EXPERIENCESING THE "PART-TIME PARENT" IS ONLY SLIGHTLY LESS THAN IF ONE PARENT COMPLETETLY TAKES OVER THE JOB. I DID NOT MAKE THIS UP! IN THIS TERRIFICALLY DESPARATE WORLD... THE ONLY WAY TO REDUCE THE TRAUMA OF GROWING UP... IS TO LIVE IN A TWO PARENT FAMILY (ALL EXCEPTIONS ASIDE).
REMEMBER: OUR LIVES HAVE BEEN THROUGH AN ENORMOUS AMOUNT OF STRESS... ENORMOUS. FOR THE ENTIRE YEAR PRIOR TO A.J.'S DEATH, I WAS STRCKEN WITH A RARE AND UNIDENTIFIABLE "DEPRESSION". I LINGERED AT HOME IN BED NIGHT AND DAY. LEAVING OUR BEDROOM FOR AN OCCASSIONAL BATHROOM BREAK AND TO EAT. HOW FRICKEN EXHAUSTED? IT HURT TO WATCH T.V. !!!
THE NIGHT I FOUND OUT OF ADDISON'S DEADLY FORM OF CANCER I WAS IN THE HOSPITAL. PRIOR TO THAT, MY PROFESSIONAL CAREER BEGAN TO SOAR(AS DID MY DRINKING). WE WERE MOVING UP THE LATTER (HA,HA).
NEEDLESS TO SAY, BATMAN'S CANCER WAS THE TIP OF THE ICEBERG OF OUR FAMILIES YEARS OF DYSFUNCTIONAL PRIVATE LIFESTYLES. WITH ALL OF THE PROFESSIONAL, EDUCATIONAL, ATHLTIC COMMITTMENTS. GOOD OLE' PAPA WAS RARELY HOME AND IF HE WAS... HE WAS SLEEPING OFF ANOTHER DRINKING SPREE.
WHILE DEB CLAIMS SHE HAS FELT ALONE THROUGH ALL OF AJ'S ORDEAL..., IT WAS THE FIRST TIME I REALLY STEPPED UP TO THE PLATE AND FOCUSED MY ENERGY ON OUR OTHER CHILDREN'S EDUCATION, ATHLETIC LIFE, SOCIAL GATHRINGS ETC. I KNOW HOW A "SOCCER MOM" FEELS!!!
PLEASE DO NOT READ INTO THID AS A SLAM TO DEBBIE OR ANYONE ELSE. THE "PAPA"'S ROLE IS SO VERY DIFFERENT WHEN MORE THAN ONE SIBLING IS INVOLVED IN THE INTENSE STRUGGLE TO "KEEP A FAMILY... A HOME!
IN YERAS PAST, DEB LITERALLY HAD TO DO ALL THE AFORE MENTIONED ACTIVITIES FOR ALL OF THE KIDS. THEN AFTER THE GREATES EASTER VACATIONS... A.J. GETS ILL AND "KA-POW" OUR LIVE'S FOCUS CHANGED... DRAMATICALLY... NO LONGER WAS SHE, UNDERSTANDABLY, ABLE TO GIVE ASHLEY AND AUSTIN THE ATTENTION SHE HAD ALWQAYS GIVEN THEM...
IT HURTS TO HEAR YOUR WIFE FELT ALONE OVER THE PERIOD OF AJ'S ILLNESS... WHEN I AM FEELING I AM DOING ALL THE JOBS I ONCE NEVER DID...
DURING THE WHOLE MARRIAGE... I WAS GOING ONE WAY AND DEB ANOTHER. I DID NOT FEEL AS ALONE BECAUSE OF MY ATHLETIC TEAM SPIRIT... THE TEAM NEEDS ME TO PERFORM CERTAIN TASKS... AND I TOOK THE TASKS VERY SERIOUSLY!!! IT WAS MY ROLE ON THE TEAM TOIVOLA...DON'T YOU SEE?
THROUGH OUT THE "BULLSHIT" OF OUR SEPARATION, WHILE DEB FEELS ONE WAY... I FEEL I WAS PLAYING AN INTREGAL (NOT PERFECT) PART IN OUR TEAM'S EFFORTS TO KEEP ADDISON JASPER TOIVOLA ALIVE... AND TO GIVE OUR OTHER CHILDREN A CHANCE AT NORMALCY IN SUCH AN ABNORMAL PLACE! ALL THESE CHANGES WERE NOT OCCURING IN GILBERT, MN...FOR GOD'S SAKE... THIS WAS THE PLACE THAT HOUSE'S MINNESOTA'S HIGHEST POPULATION!!!!!
HAS THIS BEEN HARD? YES. AM I VERY WELL EDUCATED (THANK YOU GOD)? DO I TRY AND WORK HARD IN CHANGING MY LIFE? HELL... YES! IN FACT, BASED ON THE KNOWLEDGE OF MY ROLE FOR THE PREVIOUS 17-MONTHS... I FEEL HONORED THAT GOD GAVE ME THE WILL AND STRENGTH TO GET MY "ASS" OUT OF BED (DEPRESSION) AND ABLE TO DO MY JOB.
MANY WILL READ THIS ANS SAY: "WHY THE HELL IS HE SO HIGH ON HIS HORSE? WHY? BECAUSE NO MATTER WHAT WE DID... HOW WE DID IT ... AND HOW WE COUNTED ON EACH OTHER THAT ALL WAS DONE... HERE WE ARE IN DIFFERENT HOUSES 45-MILES APART.THIS IS AFTER WE THOUGHT WE ALL DID THE BEST JOBS WE COULD...
HOW IS ONE ABLE TO FACE A FAMILY, THAT WEEKS AGO WAS "CRACKING" BUT HOLDING IT ALL TOGETHER... EVEN HAVING FUN...!... AND NOW ARE ON THE OPPOSITE SIDES OF THE EMOTIONAL SIDE OF THE WORLD.
THIS JOURNEY NOW INCLUDES, NOT ONLY THE DEATH OF OUR LITTLE ANGLE, BUT THE COMPLETE DISARRAY AND DESOLUTION... OF THE SAME FAMILY THAT TRIED TO DO EVERYTHING RIGHT. THAT FOUGHT DESPARATELY TO SAVE OUR CHILD'S LIFE!!!
AFTER ALL OF THAT... AFTER ALL OF THIS... HOW EASY DO YOU THINK IT IS TO PICK UP ASHLEY AND AUSTIN AND GO TO A MOVIE AND HAVE AN ICE CREAM CONE?... OMLY TO BE DROPPED BACK AT A HOUSE THAT ONCE WAS A LARGEST PART OF OUR UNIVERSE... GO FIGURE...! BIG TOUGH GUYS, PSYCHOLOGISTS, AND MEMBERS OF THE CLERGY... WHAT FRICKEN WORDS CAN YOU SAY THAT WILL CHANGE ALL OF THIS. I ASSURE YOU... THE ONE'S YOU WRITE THAT MAKE YOU FEEL SO IMPORTANT AND SMART... I WILL LAUGH MY ASS OFF AT!!!!
DEB-SORRY I USED YOUR FORMAT TO COMMUNICATE WITH "YOUR" PEOPLE. CONSIDER ME A PAPA SPEAKING OUT... I AM SORRY I HAVE WRONGED YOU...AGAIN.
DT
Friday, October 24, 2003 2:53 PM CDT
I APOLOGIZE FOR WRITING THIS WEBPAGE. DEB'S WAS SO HONEST AND FORTHBEARING. SO INTENSELY PERSONAL...
WHILE WE GRIEVE, AND EVERYONE DOES IT SO DIFFERENTLY, WE MUST FIND A WAY HOME. THE WORST PART OF A.J.'S LOSS (FOR ME) IS HOW LOST I FEEL.
OUR ENTIRE FAMILY WAS X-COUNTRY SKIING AT OUR FAVORITE LITTLE GET-A-AWAY IN ZIM/TOIVOLA MN. YES, THERE IS A PLACE NAMED TOIVOLA 20- MILES FROM OUR HOME. DEB RECENTLY RETOLD ME THIS STORY. NOW IT SEEMS I REMEMBER IT.
WELL ANYWAY, WE ARE ALL TOGETHER AND "PAPA" IS BARKING "I KNOW THESE TRAILS... I HAVE SKIED THEM MY WHOLE LIFE AND I LEARNED THEM FROM THE FAMED TOIVOLA WOODSMAN ART ARO!" YOU GET THE IDEEA... I WAS LOST... WITH 3 LITTLE KIDS... AND A WIFE WHO WAS SO SCARED SHE PROBABLY HAD ALREAY SOILED HERSELF.
THE FEELING ... THAT FEELING OF BEING COMPLETELY LOST.... WITH MY FAMILY COMPLETELY LOST IS HOW IT IS FOR ME NOW. BEING LOST IS A MOST FRIGHTENING FEELING... DEFINITELY IN THE TOP 10 OF BAD EXPERIENCES.
THIS TIME, HOWEVER, I HAVE VERY LITTLE HOPE OF FINDING MY WAY HOME. WHY? BECAUSE HOME AS THE ONE I NEW NO LONGER EXISTS.
I MISS MY ASHLEY (8), MY AUSTIN (7), AND MY ONLY TRUE FRIEND DEB (18). yET, WHILE I AM WITH THEM ... I AM NOT SEEING THE WORLD LIKE IT WAS NOR AM I ABLE TO SEE A FUTURE... BUILT BY THE FOOUR OF US... WHEN WE ALREADY CARVED OUR WAY FOR THE FIVE OF US.
YES, GOD... YOU ARE GOOD
PLEASE GO TO PAST JOURNAL TO READ DEB'S UPDATE.
Friday, October 24, 2003 10:31 AM CDT
Addison we miss you so very much. You have made such an impact on our life. You have touched so many lives. It is difficult to know just how to move forward without you there next to me.
Halloween is just around the corner. It will be our FIRST without you. Oh, how you loved halloween. Last year you were, of course, batman. You dressed up everyday the whole month of October. It didn't stop there you wore your costume almost daily. Austin is struggling with what to be this year. He wants to wear your costume. He misses you so very much. Ashley, she talks of you daily and misses you too. They loved there baby brother. Life is hard for them. They don't ever want to forget you. They love you. Our hearts are so broken without you in front of us, standing with us. I know you are here with us but we long to see you, touch you, kiss you, to hear you talk to us, watch batman movies with you, and play with you. WE LOVE YOU.
PLEASE GOD GIVE US THE STRENGTH WE NEED TO GO ON. WE PLEASE TO CONTINUE TO PRAY FOR OUR WHOLE FAMILY AS WE ENTER THE WORST OF THE JOURNEY. THE JOURNEY FOR US HAS ONLY BEGUN. I PRAY THAT NO ONE HAS TO GO THROUGH THE LOSS OF THERE CHILD. I CANNOT EXPLAIN THE PAIN, LIFE NEVER IS NORMAL AGAIN. PLEASE FORGIVE US AS WE STRUGGLE TO FIND SOME HAPPY GROUND AND PEACE WITH LIFE WITHOUT OUR ANGEL ADDISON. IT MAY TAKE ALONG TIME AND WE NEED YOUR SUPPORT MORE THAN EVER. I CAN ONLY ASK THAT YOU PLEASE CONTINUE TO PRAY FOR US, WE NEED YOU ALL SO VERY MUCH. GOD IS GREAT.
Deb and family.
Please continue to pray for mightymax he has been ventilated for the 4th time and really needs prayers to fight for his life. He has been through alot. Thank you.
Wednesday, October 22, 2003 5:41 PM CDT
THERE IS NOTHING ABOUT LOSING A CHILD THAT IS GOOD. NOT ONE "FRICKEN" THING.
"HE'S IN A BETTER PLACE", "AT LEAST YOU HAVE TWO OTHER CHILDREN", AND "HE IS NOT SUFFERING ANYMORE"... ARE VERY KIND WORDS THAT MAKE ME SICK. NOTHING WILL BRING OUR LOVELY ANGEL BACK. NOTHING.
THANKS ANYWAY... I GUESS.
"EDGEE-NESS" AND ANGER PREVAIL IN MY DAILY JOURNEY. I ALSO WANT MY LOVED ONES TO PEPPER ME WITH LOVE, "I LOVE YOUS", "I NEED YOU", "YOU ARE A GOOD PAPA", .... YET, UPON HEARING THE WORDS .... I AM EMPTY AGAIN...
"FRICKEN" EMPTY!
MISERABLY SO, DEBBIE,ASHLEY, AUSTIN, AND I HAVE SEPARATED. TRY THAT ONE ON FOR SIZE! "TELL ME A'NT SO JOE"... IT IS SO VERY WEIRD.
I LOVE NO ONE ON THIS EARTH MORE THAN DEBBIE. NO ONE! OF COURSE, OUR LOVELY CHILDREN FIT RIGHT IN THERE TOO. HOW CAN SUCH A LOVE, MY LOVE FOR HER, BE NOT ENOUGH TO BANISH THE MY ANGER, MY SARCASM, MY DIRTY LOOKS DIRECTED AT HER, AND...AND...AND... WITH THAT SAME LOVE MAKE EVRYTHING ALRIGHT? PLEASE, PLEASE, PLEASE MAKE EVERYTHING ALL RIGHT AGAIN...
WHERE DOES ONE GO FROM HERE. I MEAN,,, I MUST GO TO MARITAL COUSELING WITH THE PERSON I LOVE MOST IN THE WORLD. I MUST GO TO PERSNOL COUNSELING SO I FEEL BETTER AND CAN DEAL BETTER ABOUT THE DEATH OF MY BABY SON....! WHO THE HELL ARE YOU GREAT PSCHOLOGISTS KIDDING. MY SON IS DEAD... I CAN NOT TALK WITH THE PERSON I LOVE MOST IN THE UNIVERSE... HOW ABOUT THAT ONE MR. FREUD...
EVERYONE IS SO TIGHT LIPPED ABOUT SEPARATION AND DIVORCE. WHY? BECAUSE IT SIGNALS FAILURE. NOT L\JUST FAILURE FILLING OUT YOUR TAXES... BUT FAILURE IN THE EYES OF GOD HIMSELF. WOW... KICK THAT CAN AROUND FOR AWHILE. GOD, I WON'T LET ANOTHER GUY SKATE PAST ME AND SCORE... MAY I HAVE ONE MORE SHIFT....
WHERE ARE THE ROSES, THE SUN AND IT'S WARMTH, WHERE IS MY ADDISON... WHERE AM I.... LORD? AND... HOW IN THE HELL... DID I GET HERE?
DAVE TOY-VA-LA
Tuesday, October 14, 2003 11:53 AM CDT
I want to thank everyone who is still checking in on us. We so much need you all. Please sign on and say hello. We look forward to it everyday.
The days are long and hard. Ashley and Austin started school again yesterday. They were so excited and scared all at the same time. For me I would like to keep them next to me forever. Life doesn't allow that. I am so glad there first day back was a success. For me, REALITY, alone with no one to teach the abc and color and playdoh. I miss watching those BATMAN movies. Addison would watch one after another. He had to have the exact figures that were in the movie and the exact batmobile to match. He had them all. I would run and fetch whatever he wanted.
Yesterday, I found Addison's 4 teeth that had to be pulled out do to the medicine, Addison's earring aids which he picked out himself. He was so proud they were green with blue swirl. He looked fabulous in them. If only I would open the box and have him jump out and say SURPRISE I HOME. That will not happen.
I went to an event this Saturday that was a tremendous honor for me. We had a great friend of ours recieve his WHITE COAT. Ross Perko has been extremely important to our family. He is in his first year of medical school and they recieved there white coats on Saturday. The Perko family allowed me to be apart of it. I have to say I felt Addison with me that day. I know he was so proud of Ross. Ross was the greatest person in a small boys life. He did so much for Addison. I don't want to give out any secrets but Ross and Batman are best friends. What they did for my children will NEVER be forgotten. Addison so loved the family. We love you all and thank you for letting us be apart of your family. Bill Maxine Ross and Margaret THANK YOU. We love you all so very much.
I would also like to say a thank you to the Ronald McDonald staff. We miss you all and thank you for everything.
Give your children a special hug and spend as much time with them as you can. Remember to take a day off of work and be with them. Love them hug them and kiss them and tell them you love them. It is all wonderful. Thank GOD for all you have. For without him you would have nothing. Thank you GOD for giving us Addison and all the joy he gave to us. Although I could have used a few more years like the rest of my life. I will take what I had because it was better than never having had him.
I leave with a statment Austin made: "Mommy wouldn't it be nice if God would let us have Addison back for like maybe 99 years or so and they he could take him back to heaven?"
OH, would that be nice. Kids are great they have great minds. God bless you all.
Love to all.
Deb and family
Please say extra prayers for the children still fighting cancer and all these other horrible diseases:
Laura in Minnesota
Sam and Maddy from Michigan they have three children with MLD and two are going through there bone marrow transplant please go visit them: www.caringbridge.org/mi/trimper.
I hope that is right. It is in my favorites so I don't need to type it out. If it is wrong I will be back to change it.
Mighty Max in Minneapolis. Go Max Go.
Saralee in Minneapolis going through bone marrow transplant. There are many more. Thank you
Wednesday, October 8, 2003 2:12 AM CDT
Hello everyone. It has been almost a month since we lost our sweet Addison. I miss him so much. I want to say thank you to everyone that has left such kind words and given us the courage to move forward. We are going to keep the webpage going.
The month has been filled with so many emotions. Lots are so hard to deal with but we do the best we can. Upon our return home to Gilbert, well that was hard because we walked into a house we haven't lived in for almost 2 years. It was still baby proofed and all reminders of how we left. We left with a little boy that thought his name was baby. He then turned into Batman. I don't know when he realized his name was Addison. Before leaving to fight our battle he used to tell people my name is baby. He was so special, is so special. The pictures on the wall are of alittle boy with hair. I haven't thought about that life for awhile. It almost seem that we lost 2 children. Almost like the dreams you have when you see someone or something and think gee I think I know that person.
The task of getting the house cleaned is not easy. Nothing has been cleaned in almost 2 years. You can't take a bath you have to wash everything first. You have to wash all the bedding so you can put clean sheets and blankets on the bed so you can go to sleep. Let's just say it has kept me busy and will take along time to finish. A true house cleaning is getting done.
I started with a draw in the kitchen and the first paper I pulled out is dated April 16th 2002. It was Addison's admission's to the hospital in Hibbing. The day it all started. We didn't know what was happening. The fear how would we handle this? What was going to happen?
Everyday there are reminders of our loss. The car no longer has the car seat. Go shop for grocery's there is no stroller no medical bag that was needed everywhere we went. All the emptiness is so raw. Although Addison was 4 he still was like a baby in many things. He didn't walk long so we always took strollers. He had a bag with all his stuff that we had to have just in case. Now I get out of the car and all I have is my purse. I always feel like I'm forgetting something.
Sleeping well that is probably the hardest. I always slept with Addison. I needed to be with him so I could hear him breath. I probably needed him more. I was never without him. I miss him soooooo. The empty feeling is a daily feeling.
I thank GOD everyday for giving me the greatest little boy and letting me be his mommy. Until we are together again I will think of you everyday of my life. Ashley and Austin talk about you everyday. They miss you and love you so much. Addison I know God is taking great care of you and you are painfree and cancer free until we are together again we will never forget you. We will be together for eternity............................... I love you my little batman.
Ashley and Austin will be starting school next monday please pray for them to have the strength to move forward. They are doing as well as can be expected. They have been through more in there life and there emotions are up and down. They are scared of being alone and have a tendency to want to be with me always.
Austin had a dream this month and I would like to share it with you. He woke up one morning crying so hard I asked, "What is the matter?" He said, "I had a dream Addison came to me and rubbed my arm and said YOU DON'T HAVE TO BE SAD ANYMORE." Then Austin said, "He was still bald mommy." I said, "That was Addison talking to you, you should listen to him." Addison always was so
compassionate to his broder and sissy's feelings.
Thank you all for listening. Thanks for your kind words on the guestbook please continue to leave them. It is so helpful to read from you all.
Please pray for a dear little boy named Mighty Max he was vented for the third time this week and really needs some prayers. Also pray for Laura she has a terrible bacteria and is in the hospital.
To all the staff of 5b and all thank you so much. We miss you all. We have the loons playing in the background right know. You are all the greatest. Thank you for helping us with our journey. The journey has only begun. God is Great. Thank you God for the miracle of Addison Jasper Toivola. We are honored you chose us for his parents. Addison we miss you and love you forever.
Deb and family.
xxoo
Monday, October 6, 2003 11:45 AM CDT
BASED ON THE NUMBER OF RESPONSES DEDICATED TO "EASING THE DISCOMFORT" OF THE MEAN SPIRITED,MISGUIDED, AND UNRESEARCHED ENTRY FROM THE 'CONCERNED PEOPLE OF THE TWIN CITIES', ONE FEELS IT A RESPONSIBILITY TO SET THE RECORD STRAIGHT. THIS WILL BE THE LAST UPDATE IN DEFENSE OF MY SON A.J. AND OUR FAMILY:
1. THE BOARD OF DIRECTORS FOR MITCH CHEPOKAS' FUND (MIRACLES FROM MITCH) SELECTED OUR FAMILY AS THE FIRST FAMILY TO RECEIVE THE CHARITY'S GIFT.
WE DID NOT APPROACH THEM. WE WERE SELECTED AND WERE SO VERY HONORED AND HUMBLED TO BE SELECTED. HUMBLED AND HONORED!
2. OUR FAMILY (DAVE, DEB, ASHLEY, AUSTIN AND A.J.) HAVE BEEN AN INTREGAL FORCE IN RAISING "TENS OF THOUSANDS" OF DOLLARS FOR THE PEDIATRIC CANCER ORGANIZATIONS FROM THE "TWIN CITIES" AND MINNESOTA IN GENERAL.
WHILE OUR 'BABY' WAS DYING WE CONTINUED TO WORK ON BEHALF OF THIS COMMUNITEE'S VARIOUS PEDIATRIC CANCER CHARITIES. NOT ONLY DID WE WORK, WE BATTLED TO HELP OTHER CHILDREN FIGHT THIS HORRIBLE DISEASE.
3. THE "DETRACTORS" FAILED TO RESEARCH OUR FAMILY'S CONNECTION TO THE CHEPOKAS FAMILY AND, ESPECIALLY, MITCH.
OUR FAMILIES HAVE ENDURED THE SLOW DEATHS OF OUR SONS... TOGETHER. THE CHEPOKAS AND TOIVOLA FAMILIES ARE BONDED TOGETHER FOREVER BY THE EXPERIENCES WE LIVED THROUGH TOGETHER!
OUR SON (AND OUR FAMILY) KNEW AND LOVED MITCH VERY MUCH. MITCH LOVED OUR SON VERY, VERY, VERY, VERY MUCH! SO PLEASE DO NOT SPEAK FOR "MITCHY" OR THE CHEPOKAS FAMILY.
AGAIN, IF YOU WOULD HAVE SIMPLY DONE YOUR HOMEWORK, YOU WOULD HAVE FOUND THAT THE TOIVOLA AND CHEPOKAS FAMILIES HAVE BEEN INSTUMENTAL IN RAISING HUNDREDS OF THOUSANDS OF DOLLARS FOR YOUNG CHILDREN STRICKEN WITH CANCER AND THEIR FAMILIES.
FINALLY, THE TOIVOLA AND AAS FAMILIES OF NORTHERN MINNESOTA HAVE BEEN KNOWN, FOR THE BETTER HALF OF A CENTURY, AS PEOPLE WHO GIVE OF THEMSELVES TO HELP OTHERS. WE ARE GIVERS AND NOT TAKERS...
IF YOU HAD DONE YOUR "HOMEWORK" YOU WOULD HAVE FOUND THIS OUT TOO...
OUR SON PASSED AWAY AT 1:15 PM ON SEPTEMBER 9, 2003. IF YOU HAVE CHILDREN, PLEASE GIVE THEM AN EXTRA HUG TODAY. REMIND THEM THAT BEFORE THEY SPEAK... THEY NEED TO KNOW WHAT THEY ARE TALKING ABOUT...
DBT
Tuesday, September 23, 2003 11:41 PM CDT
UPDATE MONDAY: Hello everyone, just a short note. We are in Mpls. for a service for Addison. We are having it at the hospital on the 7th floor,Tuesday at 4:00p.m. The staff and community was our biggest family for the 17months we were there. We are grateful for all there support and love they had for Addison and our family. Dave also spoke at the Miracle for Mitch foundation. What an honor. Addison we are missing you so much. Love you BATMAN.
NEW PICTURES ARE UP AND YOU CAN SEE THEM. First picture is of the tumor coming out of the stomach. Second and Third picture is when Addison woke up and told me he loved me and wanted to see the kids and tried to smile for a picture. Fourth Aj is his casket, next one is the vault they decorated. The last one is Addison in his batman outfit. The front picture is a family pictures.
It has been two weeks... My head is still numb and I cannot figure out what I am suppose to do. I have a whole in my heart and the feeling of loneliness that doesn't go away.
Ashley and Austin are doing okay they have lots of questions and we have long conversations. They had decided that Addison was teaching Jesus all about Batman. Since he knew everything.
We have had a number of changes in our life. First we had to say goodbye to our sweet boy (Broder)grandson etc...Then we had to leave our hospital room of a month. Not to mention 1 1/2years of life there. The family we had to say goodbye to. (Nurses and Doctors and The entire Addison team which made up volunteers, janitor, social worker, child life workers etc...)There is a whole family just at the hospital. Then we went to the RMHOUSE and had to begin to pack up our apartment and all the stuff we had accumulated over a year and half. WOW...My dad and stepmom left Wed at 4:00p.m. (Addison passed away on Tuesday) Austin went home with grandpa and grandma. Mom and Ashley went home on Thursday morning. We followed Addison home. We went straight to Hibbing and finalized all the arrangements. Dave stayed in Mpls. til Friday. He finished up some final jobs there for the funeral and picked up my sister at the airport.
Thanks to my brother Ed, He made Batman stickers for everyone who came to the funeral. He also decorated the casket in Batman logos. It was great. For the visitation we had the batman theme playing. We all wore batman shirts and ties and earrings and necklaces. There were alot of people in batman t-shirts. Thank you everyone.
Visitation was from 10:30 to 12:30 then we went to the church for the service. BATMAN with Ashley and Austin by his side escorted Addison and all his family into the church. Thank you Batman you are the greatest. Addison loved you so much. I know he was so excited to have you do that for him. We love you and your whole family. You have been so great we can never tell you how much we appreciate what you did for us (Addison). Thank you Billy and Steve for the great speech (Not the word I'm looking for.) It was so wonderful. You are so special.
Next we went to the cemetery for a short service. Again the vault was completely done up in Batman logos and was black and yellow. The flowers were all yellow and in the middle of it was a batman logo done so beautifully. We are so grateful for all the work everyone put into helping us celebrate the life of ADDISON JASPER TOIVOLA. Addison you will always be my hero.
We finished the day at the Memorial building for food. It was great food. I don't remember much It was a difficult day and I still feel numb.
I want to thank you all for coming and being with us. A special thank you to all the nurses, friends and RMH staff and friends that drove all the way here for us. We are so honored to have you love us. We love all of you. We will never forget you. We also had lots of friends drive from several states to be with us. We will never forget your friendship, and we will continue to be with you.
Me and the kids took a trip to the cities to bring my sister to the airport and visit the RMH and the hospital. It was a hard trip but felt like we needed to be there. We left without really saying goodbye. It was good to see everyone and just be were our home as been for so long. We start this next part of our journey with the pain of a missing child at the dinner table, sleeping, in the car all the places Addison should be. We also lost our home and our comfort zone. We know are home but we must start all over. We haven't lived in our house for 17 months. Addison didn't even remember this house, so how do we move from the home he only remembered. It is hard and it will take time to feel like we are close to him again. I am rambling so I will say Sorry.
I promise I will update the pictures, I will be doing that on Thursday. I have a appt. with the scanner. I found someone who has a scanner.
The final news tonight is: We promised Addison when we went home we would buy him a batman dog. We have decided to still do this with one exception. I think he would like this....we are going to get a batman and robin dogs. We are still looking for a batman dog. We are looking for a black weiner dog Male, runt of the liter if possible. If anyone can help us out with this we would so appreciate it. We have found a robin dog and will be getting her tomorrow. She is a pomerianian/pickaneese mix. I didn't spell that right sorry. In honor of Addison we are still looking for batman puppy. PLEASE HELP US.
Thank you so sorry for the long update. I hope I didn't ramble to much. Please continue to pray for us we need the strength to go on daily. Please sign the guestbook and let us know you are still with us. We need you probably more know than ever. God is Great.
Deb and family
Love you all please hug your children and love them. Nothing is more important than your children and we never know when we will be without them. Can you take a day off of work to be with them. Even if it is to have fun. Do it. DOn't wait Don't put it off. If you have worked and earned a personal day do it. Take them in your arms hug and love them. Just think of the great memory: I took the day off of work and hug and loved my kids all day. That's all we did.
Monday, September 15, 2003 1:07 AM CDT
We said our final goodbyes to our sweet, precious Addison on Saturday. I can only say that it was a day filled with batman (WHICH WAS ADDISON) He loved batman so much. Addison I hope you loved it. We did it all for you.
We would like to thank EVERYONE who helped in the planning and getting everything done. It was alot of work to get all the batman stuff together, thank you all. If I tried to thank all the people by name I would leave out one or two names by accident and I really don't want to do that. SO THANK YOU FROM THE BOTTOM OF OUR HEARTS.
This will be a short update. I just want to ask you all for one more favor, if I could. I would like to put together a memory book of all the things you remembered about Addison. I had another mother do this and she loved it. So please right down a story or whatever you think of about Addison and mail it to me at: 114 West Michigan Ave Gilbert, MN 55741. That is our address. Thanks Example: Addison would always walk through the hospital (5b) floor and wear his batman costume with the mask. If the mask was down he was batman. If it was up he would be Bruce Wayne. I don't think he knew his name was Addison for along time. Please send anything you remember.
I will update soon and let you all know about Saturday I hope to figure out how to change the pictures so if you couldn't make it you will see some of it.
God is Great. We love you all for all you did for all of us.
Deb and family.
Addison we love you so much. We miss you and can't wait til we are all together again. I hope you approved of your batman funeral. We will try to be as brave and strong as you. I love you with all my heart. I only wish we had more time. Someday we will be together forever. I will never forget what you brought to my life. Thank you for all the precious memories. My heart hurts without you. I miss touching you, kissing you, talking with you. All the things about you. I know you are watching over sissy and broder. LOVE YOU BABY.
Tuesday, September 9, 2003 7:25 PM CDT
UPDATE: Just wanted to let you know Addison's arrangements are as follows: 10:30 a.m. to 12:30 Saturday Visitation at Dougherty Funeral Home in Hibbing MN. At 1:00 p.m. Saturday Funeral at Blessed Sacrament Church in Hibbing, MN. Please hug your children ever chance you get. No one knows if it is the last time.
It breaks my heart to write tonight. Addison Jasper Toivola passed away at 1:17 p.m. Addison was born April 9, 1999 and became an angel September 9, 2003.
He was in his mothers arms and his dad was rubbing his head. Grandpa Don and Grandma Teri were by his side. All his loving nurses and doctors were with him. It was so very hard to watch his life end and his heart stop.
Addison went very peacefully. Ashley and Austin had the greatest moment the night before. Addison woke up and wanted to be talked too. He even took a picture with his sissy and brother. You should have seen him trying to smile. He was the greatest superhero I have ever had the honor of being part of. Addison had enough energy to say I love you back at me. I will cherish him and that moment forever.
Thank you for all your support and love. We will cherish all you wonderful people.
Ashley and Austin got to say goodbye to there brother. They are having a tough time but we were all together as a family and they were there from start to finish.
Please say a prayer for them to have peace and strength for our next journey without our precious baby.
We love you all and thank you.
Deb and family
Addison mommy loves you forever. You brought sunshine and laughter to all you met. You touch everyones heart that crossed your path. You gave me strength, showed me what unconditional love truly was. I will think of you every moment of everyday. Sissy and brother miss you so much. They know you are no longer in pain, but they wish you were still with them. You are with Jesus. We will all be together again soon. xxoo Love you baby.
Monday, September 8, 2003 10:37 AM CDT
This is a quick note to let you know what is happening.
Addison's vital stats. dropped early this morning. His Respiratory went down from 10 to 12 and his heart rate went into the low 100's. They tried to wake him up and he wouldn't so they turned off his pain medicine for one and a half hours.
Addison's kidneys and liver are not working very well. They have become worse. His Amonia and B.U.N. levels are very high. They went up fast.
He is full of fluid and his right lung is being pushed up by the fluid.
The doctors don't know if Addison will make it through the next 24 hours. They are afraid he will go into liver and kidney failure.
We are still praying for the miracle only God can give us.
PLEASE GOD... PLEASE Give ADDISON TOTAL HEALING... AND LET HIM STAY HERE ON EARTH WITH US!
I will update you when I can.
Saturday, September 6, 2003 11:33 PM CDT
I need to start by saying we lost another child to this monster. Our dear friend Bret from Iowa passed away tonight at 5:15p.m. Please pray for them to find peace.
We had Grandpa Don and Grandma Teri here on Thursday and they left today Sunday. It was so hard to see them leave. We all shared a few tears in our goodbyes. It was so great to have them here for there support.
Just a short story. Addison hasn't been saying much but will shake his head yes or no. Grandma was going to take Ashley and Austin out to get some play time in and Addison out of the blue says,"Grandma your not leaving me." It was so precious to here him. Grandma didn't leave she stayed right by him. Grandpa and Addison got to take a nap together and that is a priceless picture. I hope that was short enough. I like to ramble.
Addison has had many days of sleeping. His pain medicine has him sleeping most of the day. When you talk to him he will move his head yes or no. But he only opens his eyes alittle (10 minutes maybe a day). He needs to rest so he can fight.
Addison finished his chemo up at 3:00a.m. Saturday morning. Now we pray and wait to see if it works.
Addison's CT Scan was about the same which was good because they thought maybe his lungs would have alot of cancer. They had a few extra nodulars but nothing huge. This thought came because his tumor in the liver had grown alot in the last week. His AFP was 165,000. This is a huge increase.
Addison's liver test on Wednesday were getting so bad that told me to start to think of what you would like to do if something might happen. They said the tumor (if it continued to grow)would eventually erupt. His bile ducts are getting crushed and both kidneys are losing function. It was scarey and the doctors said they were scared.
With all of you praying for Addison let me say THANK YOU. I know GOD is listening and we have made small small steps in the right direction. Addison's liver test were as of Wednesday:billirubin 15.6, ALT 296, AST 2306. Plus his blood and platelets were being eaten up by the liver and he was getting transfused twice a day and some three times a day. Today the doctors are pleased the same liver test showed, billirubin20.7 (this is still going up, this is why he is yellow) ALT 41(HOORAY) AST 262(HOORAY). Normal should be billirubin 0.0-0.3 This one is still high. ALT 0-35 We are getting closer. AST 0-50 going in the right direction.
We are still in a dangerous postion but we are glad some of the test are getting better instead of getting worse. We have a long road ahead of us. And ask that you please continue to PRAY PRAY PRAY. We can feel the prayers and they are doing a great job. So if you have a minute anytime of the day please stop and say a prayer for Addison.
God is Great.
I will update again soon.
Deb and family
Thank you please continue to stay with us. We need you all.
P.S. I almost forgot to tell you: Addison only needed platelets today and NO BLOOD. This might mean his liver stopped eating the blood or stopped bleeding in the tumor. Please let this chemo work and shrink this tumor. With God by our sides and all of you with us I feel a miracle coming. Please Give us a miracle.
Saturday, September 6, 2003 9:45 AM CDT
SEPTEMBER 6, 2003 9:41 AM.
Dear friends sorry I haven't updated but this is to just let you know I am waiting to see the doctors today and I will update after that.
Thank you.
Keep PRAYING.....Miracles are there just keep up the good work.
Deb and family
Tuesday, September 2, 2003 7:52 PM CDT
UPDATE WED. Sept 3rd: Addison has had some more complications. His blood is now being eaten up by the tumor so he has had two transfusions today. The kidneys are not functioning fully and the liver of course, is very sick. Addison is very yellow.
The doctor said if the chemo doesn't start working and shrinking this tumor or atleast make it stop growing, well things are looking very scarey. Addison's AFP was taken again and if you remember after chemoembolization is was 17,000 or so it is upto 164,000. That means the tumor is growing. We are still waiting on the CT Scan to see if his lungs are full of cancer or not.
We are worried but we believe GOD can still give us a miracle. We have NOT given up. We do need you to take a break during the day or before bed and PLEASE say a PRAYER for ADDISON. I will post again tommorrow with the results of the Scan. God bless you all.
I never know how to start or where to start.
Ashley and Austin started school today and they had a great day. The bus driver had a problem getting the kids home from school. The kids had to call from the busdrivers phone to ask how to get there. They were an hour late getting home. Talk about worried. I hope tomorrow gets better for that.
Addison's pain was well managed over the weekend. Monday it started to get worse. His liver enzymes and bilirubin are higher with each day. So we didn't wait to get the final word on the experimental chemo seeing he probably wouldn't qualify.
The Dr. said there was no reason to wait for two more days. The liver was going failing and would probably end in liver failure. So we started chemo on Monday night.
Addison's platelets aren't recovered and they won't because the liver is eating them up. So we are rolling forward with hopes that this chemo will start the shrinking process and ease Addison's pain.
I don't know if I mentioned it but the tumor is growing again. He was down for a CT scan today and the side view with him laying on the table was well... "WOW! how can it be that big?" (His stomach). We are trying to keep him comfortable.
Please continue to PRAY for Addison. Thank you all for your support.
God is Great
Deb and family
Saturday, August 30, 2003 6:34 PM CDT
Hi everyone.
***UPDATE ***: WITH A.J'S TUMOR GETTING LARGER AND HIS LIVER'S VITAL SIGNS BECOMING WORSE, HIS MEDICAL TEAM DECIDED THAT HE NEEDED TO BEGIN CHEMOTHERAPY IMMEDIATELY. THEREFORE, A.J. WILL NOT TAKE PART IN THE EXPERIMENTAL CHEMOTHERAPY TRIAL.
A.J. BEGAN A MORE TRADITIONAL ROUND OF CHEMOTHERAPY AT APPROXIMATELY 10:00 PM ON MONDAY SEPTEMBER 1, 2003. NEEDLESS TO SAY, "ALOT" RIDES ON THIS CHEMO-SERIES.
ASHLEY AND AUSTIN BEGAN SCHOOL TODAY. DEBBIE HAD THEM "GUSSIED UP" TO THE MAX. THEY BOTH LOOKED LIKE MODELS OUT OF SOME CHILDREN'S MAGAZINE/CATALOG. IT WAS COOL! THEY MADE IT SAFELY TO THEIR CLASSROOMS AND THEIR TEACHERS GREETED THEM WITH "OPEN ARMS". THE FIRST DAY OF SCHOOL ALMOST HAS A HOLIDAY FEEL TO IT. WE ATTACH SO MANY OF OUR DREAMS AND WANTS FOR OUR CHILDREN ON THEIR EDUCATION. IT IS A HUGE DEAL!
WHAT HAPPENED TO OUR SUMMER?
We had a meeting with the doctor on Thursday September 29,2003. They had included Addison's name on some experitmental chemos... and one came up. So we are doing a bunch of testing to see if he would qualify to get the chemo.
We are pretty sure he will not be able to get it. One reason he needs platelets to be 100,000. They are only at 45,000. But we have until Tuesday to get them up. The second reason is his liver tests. They need to be normal. Addison's bilrubin is high and went up again today. He is yellow and jaundice.
The good news is that he hasn't had platelets or blood transfusions
UNTIL...today. He went 2 days without getting any. That is great because the platelets are building up atleast alittle. We are so hopeful.
The doctors would like to do some chemo next week. They will decide by Wednesday.
The tumor is still growing so they need to do something! We will not be doing our Disney World trip for a while. That is okay because we are together and that is all that matters.
Addison had a ultra sound that showed his one kidney is being crushed and the blood flow to it isn't the greatest. They are concerned but we are playing it one day at a time.
The growth in the liver is also "squishing" his bile ducts in the liver.
Addison's pain seems to be better managed at this moment. He has been somewhat comfortable. He sleeps alot more. Atleast he is not screaming in agony all day long.
Austin had a great birthday. Dave, was in charge this year and took great care of the children. Uncle Ed was there to help chaperone. Ashley was the only girl but she had fun too. Austin went home (to Hibbing, MN) with Uncle Eddie and Dylan and is having fun. He calls his MAMA everyday and says, "I Love you Mom" "BYE". Atleast he calls. Ashley is having some alone time.
Friday, Ashley and I went to do school shopping and hangout together. Saturday, Ashley and Dave went on a bike ride together. Austin will be back tomorrow. We miss him.
Please continue to Pray for Addison. God will listen to all of us. We are still going for the miracle. We trust God will provide for us.
God bless.
Deb and family
Love to all. Please pray for our dear friend Bret. He is still heavily sedated. www.caringbridge.com/ia/bret
Pray Pray Pray and Pray some more. PLEASE.
Thank you.
I found this and wanted to share it with you:
There are two ways to live your life.
One is as though nothing is a miracle.
The other is as though everything is a miracle. Albert Einstein.
Tuesday, August 26, 2003 11:56 PM CDT
It has been a busy time. This weekend A.J.was in alot of pain and we had a hard time figuring in the right medications and getting A.J.'s pain under control.
On Sunday, Grandma Marilyn and Uncle Eddie and cousin Dylan came to visit. We stayed up at the hospital all day. Addison also had his best buddy come up to see him, LUCAS. They love each other so much.
It was so precious to watch these two together. Lucas kept rubbing AJ's hand. Then he would say "Addison are you feeling better know." Addison would say NO. He was in alot of pain.
Lucas is doing great, we are so happy to see him, he looks great too! You can go see him at www.caringbridge.com/mn/lucaskells.
On Sunday, Addison still was having pain issues. So they decided to turn up his pain medicine. However,they turned it up too fast and he was dopey all day. It took until about 11:00 p.m.before he was comfortable and finally slept really good.
Monday I was changing his diaper and noticed a lump on his back. I, of course, panicked and start paging the nurses. They came down and they left. Then the doctors came and everyone was trying to remain calm. I could see their faces and the lump was getting bigger. They decided to get a CT scan of his back.
By the time we went down for it, his back looked like a balloon cut in half sticking out the back. I hope that makes sense...
The scan would take a day to read so we wait. They gave Addison Lasik to remove the fluid from his body. AJ's "privates" were full of fluid. Upon weighing him... he was up about 4 to 6 pounds.
The scans said he was retaining fluid in his back. The Lasik has been scheduled twice a day and after blood and platelet transfusions.
Today (Tuesday) Addison had a ultra sound to check out if there was fluid or anything else happening. The ultrasound showed his kidney was being crushed by the liver.Also,the veins in the liver and other ducts are being crushed. The intestines might have slight pressure on them. This isn't good news but we are still positive something good can happen.
They will continue to keep a close eye on the bladder to make sure that doesn't have a problem emptying out.
Addison is sleeping so peacefully right know. I hope he can have a nice rest tonight. Please pray for his platelets to recover. They need to do something about his liver growth soon. So we really need to get those platelets up to start something to stop this cancer from growing.
PLEASE PRAY FOR ADDISON.
Ashley and Austin are enjoying there uncle and cousin and grandma's visit. Today, they went to Valley Fair. Papa even got on some rides!
Tommorrow is Austin's Birthday, he will be 7. He is going to go to Chuckie Cheese. Dave gets the honors this year to throw the party. I hope he doesn't like it too much! I hope to take the job back next year. I wonder if Dave will fight me on that? Heehee.
HAPPY BIRTHDAY MY SWEET AUSTIN.
God is Great.
Thank you all for stopping in and leaving us a message. Most importantly... praying for our miracle. We believe we will get our miracle.
Deb and family.
Saturday, August 23, 2003 3:26 PM CDT
I had this update almost finished and it erased on me. So I will try to focus again and try again.
Addison had his scan on Tuesday evening 9:00p.m. Wednesday came and the waiting began. Finally at 7:00p.m. the docs came in and said noone was around to read the scans so we would have to wait til tomorrow. I was an emotional reck I just wanted to know. So we waited some more.
Thursday Dr. Weigel and Jody came in to talk about the scans. I was glad I didn't have to wait til the evening again.
The CT Scan showed that the chemo had worked only in the fact that it had slowed the cancer down. But the left lung (which he just had surgery on) had new spots already and the right had new spots and the spots that were there were slightly larger. The liver also was slightly bigger and the spots on the liver were bigger.
This was both good and bad... Good that it wasn't growing at the pace it normally would Bad because it was still growing.
Addison is still in alot of pain. His stomach is huge and doesn't look like it would be able to stretch much more. If you have been pregnant you know the feeling. The doctors think the tumor is bleeding internally. Addison still hasn't recovered his platelets from the chemo. The platelets help with the clotting of blood. He is still getting platelets daily.
The scare is that if they don't recover the tumor will continue to bleed and it will grow and start to crush the intestines and urine track. So we are praying for his platelets to recover. Please PRAY FOR ADDISON.
The doctors told us to take our Make a Wish trip when his platelets recover and spend some quality time together. Then they would start his next round of chemo which would be two chemo's which would hopefully work.
Addison had a rough night with pain medicine almost doubled to try to give him comfort. He also had a bad bloody nose in the middle of the night. In the morning he had blood in his stool so we had to head to xray to see if something was happening. Good news. Nothing, probably was from the nose bleed it went down into the intestines and he is pooping it out. Today he is sleeping and seems to have some relief. Please PRAY for comfort for this sweet boy.
Ashley and Austin went to Gymnastic Day camp all week and Friday the had a performance for the parents. They did a great job and had alot of fun. A friend, Mary, took them today to get school supplies and we thank you so much for helping out there. Billy and Heather also helped us with school supplies for the kids. We love you all.
I only ask for the PRAYER to PLEASE continue for Addison. I know we can still have a miracle.
Deb and family
God is Great.
Thank you all for your support and please leave us a message. A few words is so helpful. We are grateful for you all.
Tuesday, August 19, 2003 10:43 PM CDT
Hi everyone!
I will try to make sense of the last few days but it seems so long ago.
Addison had a very rough weekend... lots of pain. The doctors didn't know why. They first thought he had a bowel obstruction but that was not so. The xray showed AJ had fluid in the abdomen and over the weekend put on some fluid pounds.
His liver tests were not doing so good and the had to give him some IV medicine to bring the proteins back into the blood stream. After that they had to do a Lasik treatment to remove the fluid. They felt it was leaking out. His body was so puffy. His legs and feet were big and the skin was tight.
His stomach is larger but they don't think the tumor is growing. They won't know until the scans are done. The waiting is really tough.
Addison is also having fevers. They also put him on a continuous pain medicine drip to try to control the pain better.
His ANC is 200 which is better than zero. They also checked his pancreas to make sure that was working. They said it looks okay. We have been still getting platlets and blood almost daily.
We had our scans at 9:00 p.m. tonight so we should have some answers tomorrow night or the next day.
I will update as soon as I know more.
Please keep praying for a miracle. We are so grateful to you all for your support.
We have a dear friend named Bret. His family is from Iowa and his luekemia has returned and he is very sick.
Please say a prayer for him. You can stop by and check his website out if you would like: www.caringbridge.org/ia/bret
God is Great.
Thank you everyone.
Deb and family.
Saturday, August 16, 2003 10:18 PM CDT
Hi to all. Sorry it has been awhile since our last update.
Addison has had two really hard nights of pain. We had about 3 hours of sleep... with screaming in between.
We thought he was having trouble going "poop". So we tried all kinds of medicines to help.
The next night (last night) he was screaming in pain. I was up until 4:00 a.m. when, finally, the portable x-ray machine came rolling in. We did a scan to see if he had a bowel obstruction. The x-ray didn't show a good enough picture so we had to wait until morning. With much pain medicine, Addison slept the rest of the night.
On Saturday, Ashley had a birthday party (Happy Birthday Meredith). Austin went to a friends (Soren). They went swimming and played all day.
Addison had a CT Scan and we waited ALL day for an answer. The answer was: they failed to use contrast so the picture wasn't able to show anything out of the ordinary.
The Doctor said to wait and see how the evening went and in the morning we would see what to do next. That is easy for them... seeing they get to sleep all night!
I hope the IV pain medicine can keep him comfortable through the night. If not... I will be a zombie tomorrow.
We will remain in the hospital until Addison's ANC comes up and he can fight those "icky bugs". His ANC is zero.
Addison hasn't had a bloody nose since our wonderful outing in the car last week. The worst part was when pressure was put on his nose the blood would come out his eye! He has had 6 or 7 platlet transfusions and atleast 5 blood transfusions this week.
Thank you for all your prayers and PLEASE continue to say them. We still have a huge fight ahead and we need your prayers to continue. Please say an extra prayer for our friends: Laura, Amy, Mandy, Dustin and Bret.
God is Great.
Deb and family.
######
PS,
THE WAY THAT "OUR LITTLE" A.J. IS FIGHTING IS REMARKABLE. HE IS DOING EVERYTHING IN "THIS" WORLD TO STAY ALIVE. GOD HAS MADE ONE STRONG LITTLE "CHAMPION".
AS PARENTS, WE ALL HAVE SO MANY INSTANCES WHEN WE ARE SO PROUD OF OUR CHILDREN. IT IS SUCH A GRAND FEELING. TO SEE OUR CHILD FIGHT FOR HIS LIFE, THROUGH EXCRUCIATING PAIN, HAS MADE DEB AND I SO VERY PROUD. I KNOW MANY OF YOU CAN NOT RELATE AND, GOD KNOWS I NEVER WANT YOU TO,BUT THERE ARE DIFFERING LEVELS OF PRIDE. TO SEE YOUR CHILD FIGHT FOR HIS LIFE IS A PRIDEFUL EXPERIENCE THAT IS UNCOMPARABLE.
I HAVE PROMISED NOT TO UPDATE THE SITE ANYMORE. HOWEVER, IT IS VERY DIFFICULT NOT SHARE THIS STORY... A.J.'S STORY... OUR STORY... SEEING YOUR OWN SON FIGHT FOR HIS LIFE AND LIVING AND LOVING HIM TO BITS IS ONE EXPERIENCE THAT THEY DID NOT TEACH US IN THE PARENT TEXTBOOK.
I AM FORTY (40) YEARS OLD AND HAVE LIVED A LIFE THAT HAS SEEN THE "TOP OF THE MOUNTAIN" AND THE "FLOOR OF THE OCEAN"... GOD... WOULD I DO ANYTHING TO SIGN UP TO TAKE A.J.'S FIGHT FROM HIM.
MAN,I JUST CAN NOT "SPIT-OUT" THE EMOTIONS. I KNOW THAT GOD, HIMSELF, HAS ALLOWED OUR FAMILY TO RALLY AROUND ONE ANOTHER AND TO CONTINUOUSLY MOVE FORWARD WITH CONFIDENCE, GRACE, AND A GREAT DEAL OF HUMILITY. WE WILL NEVER, EVER BE THE SAME AGAIN.
THANKS.
Thursday, August 7, 2003 11:24 PM CDT
NOTE: AUGUST 12, 2003
ADDISON IS BETTER. HIS TUMOR AND STRENGTH ARE STILL NOT WHERE "WE" WANT THEM BUT THE "TWINKLE IN HIS EYES" IS MAKING A COME BACK.
AJ HAS MADE FRIENDS AND IS KNOWN BY PEOPLE FROM ALL OVER THE PLACE. PART OF THE REASON HE IS LOVED IS HIS SENSE OF HUMOR.
EXAMPLE: WHILE IN A HOSPITAL ROOM, ONE MUST SHUT OFF THEIR CELL PHONE. TODAY, I SET MY PHONE SO THAT RATHER THAN RINGING... IT WILL VIBRATE.
I ASKED AJ IF HE WANTS TO BE THE "GUY" TO DETECT THE PHONE IS "BUZZING"... HE EAGERLY AGREED.
WE PLACED THE PHONE LOW ON HIS BELLY BELOW HIS TUMOR, ETC. UPON FINALIZING THE PLACEMENT... A.J. SAYS: "PAPA I WILL FEEL IT RING ON MY KUDATZ (TESTICLES)!
" HE ... WE BROKE OUT LAUGHING ... IT ALL ENDED WITH HIS HUGE TOOTH-LESS GRIN. THIS DEAR FRIENDS... IS ONE OF THE MIRACULOUS MOMENTS OF AJ TOIVOLA!
NEWS: LATER THIS YEAR, AJ'S PICTURE WILL BE PLACED IN ALL OF THE RONALD MCDONALD COIN DONATION SLOTS IN MINNESOTA. HE IS SEATED IN HIS LITTLE CAR WITH A BRIGHT LIME GREEN BATMAN SHIRT ON. HE IS SMILING A HUGE "HOCKEY PLAYER" (TOOTH-LESS)SMILE.
HIS BANNER WILL BE PLACED IN OTHER LOCATIONS AROUND MINNESOTA TOO! WHAT A "COOL" HONOR! SO EVERYTIME YOU THROW YOUR COINS IN TO SUPPORT THE RONALD MCDONALD HOUSE... YOUR COINS WILL BE HITTING OUR "LITTLE BABY" RIGHT IN THE "SCHNOUT"! PLEASE THROW ALL THE COINS YOU CAN!
WHILE AJ WAS TO BE RELEASED TODAY, HE FELL VICTIM TO A FEVER. HE WILL REMAIN IN THE HOSPITAL FOR AT LEAST ANOTHER DAY. HE HOSPITAL TELEPHONE NUMBER IS 612.273.0337
STRANGE DAYS INDEED!
DBT
NOTE:
AJ WAS, AGAIN, ADMITTED INTO THE HOSPITAL.
WHILE SHOPPING AT ROSEDALE, ADDISON BEGAN A NOSE BLEED. BY THE TIME WE MADE IT TO OUR CAR... IT STARTED TO BLEED PROFUSELY.
WE THREW AUSTIN IN THE "WAY BACK", ASHLEY GAVE MORAL AND ORAL SUPPORT, AJ STAYED CALM, AND DEB "DOVE" INTO THE BACK SEAT AND BEGAN APPLYING DIRECT PRESSURE TO AJ'S NOSE. I, THE WORST DRIVER IN THE STATE, DROVE SPEEDILY THROUGH TWIN CITIES TRAFFIC... MAKING IT SAFELY TO THE U OF M HOPITAL.
AJ WAS ADMITTED, THE NOSE BLEED WAS STOPPED, AND HE BEGAN TO RECEIVE PLATLETS AND BLOOD.
IT JUST NEVER LET'S UP... NOW DOES IT?
Hello everyone,
Addison is home from the hospital. He is still in alot of pain and seems to be very depressed. I try to talk to him about what is going on. It is hard to know what he really understands and what he doesn't. He tells me he is scared but he doesn't know why.
We are still praying for our miracle (for total cure.) Only God can do it so please continue to PRAY PRAY PRAY. HE will listen if we are all calling to him.
My emotions are all up in the air. I cry for no reason. If you are a caringbridge family or in a situation like ours (there are so many of us.) You have all felt what I feel like. I wish none of our children had to go through all of this. We are still fighting and will continue to fight and will win. We can win.
We had the honor this week to meet some of the girls that were on the cancer floor with us last year. They are special girls and took out time of their day to meet Addison. He loved all the attention from the girls. Thank you Amy, Laura, Merrilee(I hope I spelled that right) and friend of Laura (Kevin). Kevin, thank you for learning the "Batman" theme and playing it for AJ. You saw with your own eyes how special that was.
Becky,Mindy and Sophia came to visit. It was so great to see you. Steve (Andar) with Eva you are so beautiful. Pastor Johns thank you. You are in our daily thoughts.
Tessa and Ali what can I say? It is great to have people care so much! We love you too. Janet, you are always there for us. Thank you.
Steve, Becky and Melissa I know it was hard for you to come and visit. We are so thankful for your kindness. We miss Mitchie. He was so special. God bless you all. We had alot of visitors so please forgive me if I didn't mention everyone. I am so sorry.
We will have scans August 21st and we hope this chemo has done some shrinking. PLEASE.....
I will update again. We will be doing clinic visits almost daily with blood work and transfusions. We already had blood and platelets.
Austin is recovering wonderfully and tries to milk mom for some loving but then forgets and runs away. OOOPS!!! He thinks...I still give the loving. Ashley is doing good and is healthy. HOORAY....
Thank you for checking in and please continue to PRAY for Addison and all the children that have to have these diseases. There are too many.
I just want to add the Relay for Life is in our home town is tommorrow. God bless you all. I wish we were there with you all.
God is Great.
Deb and family
P.S. AFP test last month after chemoembolization was 17,000. After cancer spread it went up to 59,920. We need to get to 10 or lower.
Thursday, July 31, 2003 7:15 PM CDT
THIS PAGE IS DEDICATED TO FOLLOWING THE PROGRESS OF ADDISON TOIVOLA'S (AND HIS FAMILY'S)BATTLE WITH HEPATOBLASTOMA.
### WE ARE GRATEFUL AND HUMBLED TO TELL YOU THAT, WHILE A.J. IS VERY ILL, HE WILL BE ABLE TO RETURN TO THE RONALD MCDONALD HOUSE SOMETIME TODAY (8-6-03). IT CONTINUES TO BE DAY-TO-DAY BUT WHEN HASN'T BEEN?### DEB WILL COMPLETE THE UPDATE IN THE NEAR FUTURE. DBT
HEPATOBLASTOMa IS A RARE FORM OF JUVENILE LIVER CANCER.RARELY IS IT SEEN IN CHILDREN OVER 2.5 YEARS OLD AND EVEN RARER IN PEOPLE 18 YEARS OF AGE AND OLDER. OVER-ALL THE DISEASE EFFECTS ONLY ONE PERSON IN OVER 1 MILLION BIRTHS WORLD WIDE. IT IS AN AGGRESSIVE FORM OF CANCER AND ONLY 2.5 OUT OF 10 SURVIVE.
CANCER IS PLACED ON A 1-4 RATING SYSTEM. ONE (1) BEING A LESS SERIOUS FORM OF CANCER AND FOUR (4) BEING THE WORST. FOUR (4) ALSO SIGNIFIES THAT THE CANCER HAS SPREAD.
WHEN A.J. ARRIVED AT THE FAIRVIEW UNIVERSITY OF MINNESOTA'S CHILDREN'S HOSPITAL IN APRIL OF 2002, HE WAS CLASSIFIED AS A LEVEL FOUR (4). HIS CANCER HAD SPREAD FROM HIS LIVER TO HIS LUNGS. THIS WAS TERRIBLE NEWS. THE TEAM OF ONCOLOGISTS FEARED FOR THE WORST BUT SAID IF "WE CAN MAKE A DENT IN THIS CANCER" AND KEEP A.J. ALIVE FOR ONE (1) WEEK WE WILL HAVE A CHANCE AT SAVING HIS LIFE.
HERE WE SIT ON JULY 31, 2003, NEARLY SEVENTEEN (17) MONTHS SINCE OUR ARRIVAL, AND A.J. IS STILL WITH US. HIS JOURNEY HAS BEEN A TOUGH ONE. HE HAS ENDURED FOUR (4) MAJOR OPERATIONS, A NUMBER OF SMALLER ONES, AND IN EXCESS OF FIFTEEN ROUNDS OF CHEMOTHERAPY. DURING HIS FIGHT, A.J. HAS CARVED SOME NEW GROUND IN THE FIGHT AGAINST HEPATOBLASTOMA. IT HAS BEEN QUITE A STORY. A.J. IS QUITE A YOUNG MAN. HE IS A FIGHTER. HE IS BRAVE BEYOND WORDS.HE, ALSO, IS A MAN OF TENDERNOUS, INTELLIGENCE AND LOVE.
ON WEDNESDAY NIGHT JULY 30, 2003, DEBBIE FOUND A SOMEWHAT LARGE BUMP ON A.J.'S BODY JUST BELOW HIS STERNUM (UNDER THE MIDDLE OF HIS RIB CAGE(S)AND UNDER HIS HEART). HE WAS IMMEDIATELY ADMITTED INTO THE HOSPITAL. THE PHYSICIANS INITIALLY FELT THAT THE BUMP WAS EITHER RELATED TO A.J.'S RECENT SURGERY ON HIS LUNG OR TO THE CHEMOEMBOLIZATION THERAPIES HE HAD GONE THROUGH IN LATE JUNE AND JULY.
OF COURSE, X-RAYS, BLOOD WORK UPS, CAT SCANS ETC. WERE ORDERED UP. THE "TEAM" FELT RELATIVELY SECURE AS BEDTIME APPROACHED ON WEDNESDAY NIGHT.
ON THE MORNING OF WEDNESDAY JULY 31, 2003 A.J.'S JOURNEY WAS GIVEN TERRIBLE NEWS. IT SEEMS THAT THE LIVER CANCER HAS SPREAD AND, INFACT, LITERALLY "EXPLODED" WITHIN HIM. THE LARGE BUMB WAS A TUMOR ON HIS LIVER. DEB WAS CALLED TO A MEETING WITH THE ONCOLOGY TEAM IN THE "BAD NEWS ROOM". WE HAVE WATCHED MANY OF OUR FRIENDS LEAVE "THAT" ROOM COMPLETELY STUNNED, HORRIFIED, AND "BEDRAGGLED". SHE KNEW THAT THE NEWS WAS NOT GOING TO BE GOOD. IT WASN'T.
A.J.'S CONDITION IS EXTREMELY BAD. WE HAVE BEEN TOLD TO PREPARE OURSELVES FOR THE REAL POSSIBILITY OF THE END TO COME. THEY ALSO SAID THAT THEY WILL FIGHT "TOOTH-N-NAIL" TO TURN THE TIDE OF THE CANCER. THEY WILL START EXPERIMENTAL CHEMTHERAPY TOMORROW.
A.J.'S JOURNEY HAS BEEN ONE OF BEATING THE ODDS AND HOLDING HIS HEAD UP IN A PROUD WAY. HE TRULY ENJOYS LIFE. HE LOVES HIS MOM, BROTHER, SISTER, AND PAPA VERY MUCH. HE ENJOYS HAVING GREAT FUN WITH HIS FAMILY AND THE PEOPLE HE CALLS FRIENDS. HE NEVER EVER WORRIES. HE ONLY LIVES AND ENJOYS.THROUGH ALL OF THIS.
WHAT NOW? DEB HAD A "SIT DOWN" WITH ASHLEY AND AUSTIN THIS AFTERNOON. SHE EXPLAINED THE NEXT STEPS AND THE POSSIBILITY OF "THINGS" NOT GOING OUR WAY. WHAT AN AMAZING WOMAN. SHE IS AMAZING. SHE IS FULL OF TRUE HONESTY AND DIGNITY.HER FOCUS IS COMPLETELY ON WHAT IS BEST FOR "THE KIDS". GOD HAS DIRECTED HER AND GAVE HER THE STRENGTH OF HUNDREDS OF GOLIATHS. HER WISDOM AND INSIGHT ARE WHAT MOST PEOPLE WANT BUT NEVER OBTAIN. IT IS AMAZING TO BE IN VTHE COMPANY OF SUCH A SKILLED, YET, HUMBLE HUMAN-BEING. ESPECIALLY IN A WORLD WHERE EVERYBODY THINKS THEY AND THEIRS "ARE THE ONES" AND "ARE THE COOLEST", "THE BEST", ETC. ET.AL. HUMILITY, AS I NOW SEE IT, SHOULD BE THE GOAL OF ALL MANKIND. IT IS NOT WHAT YOU HAVE THAT COUNTS BUT HOW YOU HELP AND GIVE TO OTHERS. "IN GIVING... ONE RECEIVES". WITHOUT HUMILITY... ONE CAN NEVER OBTAIN HAPPINESS... NEVER...EVER... THIS IS A LESSON LEARNED FROM A 4-YEAR OLD...
WE WILL CONTINUE OUR FIGHT. AS WE SPOKE TODAY, WE REMINDED OURSELVES THAT WE HAVE NEVER EVER PLAYED THIS "GAME" THINKING OF LOSING. WE HAVE ALWAYS WORKED ON EVERY LEVEL TO WIN. THE GAME AIN'T OVER NOR IS OUR WILL TO WIN.
THANKS TO A.J'S SUPPORTERS FROM ALL OVER THE WORLD. YOU HAVE MADE AN ENORMOUS DIFFERENCE IN HOW A.J. HAS RESPONDED TO THIS DIFFICULT BATTLE. YOU HAVE MADE US KEANLY AWARE THAT PEOPLE FROM ALL OVER THE WORLD ARE GOOD. WE ALL LOVE, LAUGH, AND CARE FOR OUR FAMILIES. NO MATTER OUR RACE, POLITICAL BELIEFS, NOR RELIGIOUS LEANINGS... WE CAN FIND COMMON GROUND AND IT IS THROUGH OUR CHILDREN.
DBT
P.S. We would like to ask to all who could, please PRAY< PRAY< PRAY for Addison. We believe this is so important for the miracle and healing that our son needs so much. Thank you.
Wednesday, July 30, 2003 0:20 AM CDT
Austin's surgery went great. He is home from the hospital and recovering well. He had one hernia repair and the other they couldn't get the scope across without doing damage. They decided to just do the one. The Doctor didn't feel he had a hernia on the other side. So we wait and see if he has systems in the next two years, otherwise all is great. He is sore and walks slow but should be playing normal in a week. Addison is so worried about his brother. He was scared and upset many times through the ordeal.
When they took out Austin's IV from his hand, Addison said, "Don't worry Austin it will be okay." Then he looked at me and said, "I can't watch." When they pulled out the line he rubbed Austin's arm and said, "You'll be okay." It was the cutest thing.
Ashley went to Mary and Kara's house and had a blast. They spent the day at Camp Snoopy. Addison is recovering well and his cuts are looking good.
I will update when we know what is next.
Thank you for your continued support and love. God is Great.
Deb and family.
Thursday, July 24, 2003 3:25 PM CDT
Sunday (Dave's update)July 27: TODAY HAS BEEN A FANTASTIC DAY. A.J. HAS BEEN "RUNNING" AROUND WITH THE OTHER CHILDREN OF "THE HOUSE" AND ENJOYING A CARNIVAL SPONSORED BY THE RONALD MCDONALD'S OF MANKATO, MN.
WE WERE DELIGHTED TO HAVE DEAR FRIENDS FROM WYOMING RETURN TO "THE HOUSE". THEIR CHILD, "CLAYBIRD" IS HERE FOR A CHECKUP. CLAY IS A LIVING EXAMPLE OF WHAT GOD AND MODERN MEDICINE WORKING TOGETHER CAN DO. A LIVING, WALKING, AND TALKING MIRACLE. A.J. LOVES CLAY AND ENJOYED PLAYING WITH HIM UNTIL 7:15 WHEN HIS BATTERY COMPLETELY WENT "DRY"...
A.J. TOIVOLA HAD SURGERY TO REMOVE CANCER FROM HIS LUNG ON WEDNESDAY JULY 23, 2003. TODAY, HE PLAYED AND ENJOYED ANOTHER DAY OF LIFE TO THE FULLEST. MOST PEOPLE WOULD BE HOSPITALIZED FOR 1-2 WEEKS. MIRACULOUS... ISN'T IT!!!
Saturdays update. We are home from the hospital. Aj is doing good. He has an allergy rash so we are on creme and benedryl. We are hoping it will be gone in a few days.
UPDATE FRIDAY NIGHT: Addison is out of the ICU unit. He is feeling better today. The Doctors removed his chest tube, Foley, and Epidural line from the spine. Ashley and Austin are staying at the hospital with there brother. He missed them so much. Thank you for your prayers and support.
HI..DEE...HO...DOWN THE RIVER AND UP THE MOUNTAIN WE GO!
YOU HAVE REACHED YOUR DESTINATION. THIS IS ADDISON (BATMAN)TOIVOLA'S WEBSITE. THANKS FOR YOUR CALL!
WE DON'T KNOW ABOUT YOU, BUT WE THOUGHT THAT WE WERE HEADING TOWARDS A LIVER TRANSPLANT FOR A.J. AND A RETURN TO OUR "NORMAL" LIFE... FREE OF THE HORRORS OF CANCER AND ON TO FIELDS OF JOY AND HOPE. WHILE ALL OF THIS MAY COME TRUE, IT IS NOT TO BE NOW.
ON WEDNESDAY JULY 23, 2003, A.J. HAD SURGERY ON HIS LUNG TO DETERMINE IF, BY CHANCE, THE LITTLE NODULES (THE CAT SCANS HAVE SEEN FOR MONTHS) WERE CANCEROUS. THE TRANSPLANT TEAM CAN NOT TAKE ANY CHANCES.A.J'S BODY MUST BE CANCER FREE IN ORDER TO BE A TRANSPLANT PARTICIPANT.
THE SURGEON FOUND FOUR NODULES RATHER THAN THE FIVE THEY THOUGHT WERE IN HIS LUNG. SADLY, THE FOUR (4) NODULES WERE CANCEROUS.
AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH! MAN, TALK ABOUT HEARTACHE AND SADDNESS. THERE IS NO WAY TO DESCRIBE IT. THERE IS JUST NO WAY...
AFTER A DAY OF BEING COMPLETELY DISHEARTENED AND ACTING LIKE "DEER IN THE HEADLIGHTS OF A CAR" WE HAVE RETURNED TO A PLACE OF HOPE. WE CAN REMAIN MISERABLE AND SCARED OR WE CAN LIVE IN A HOPE FILLED PLACE WHERE LITTLE THINGS HOLD MOMENTOUS JOY... THE CHOICE, OF COURSE, IS A SIMPLE ONE.
LIFE, ESPECIALLY LIFE WITH A CHILD WHO HAS CANCER, IS VERY HUMBLING.ONE CAN NOT GET AHEAD OF THEMSELVES.WHETHER THE NEWS IS GOOD OR BAD, AN EQUILIBRIUM OF EMOTIONS MUST BE THE GOAL FOR THE CHILD'S LOVED ONES. ANY WAY UP OR WAY DOWN EMOTION CAN LEAD TO A COMPLETE "BREAK-DOWN"!!!YES... I SAID...COMPLETE...
SURELY, WE COULD BEGIN TO WRITE OF EMOTIONS WE CAN NOT DESCRIBE. BUT... AS DEB HAS SAID HUNDREDS OF TIMES... "WOULD THAT BE GOOD FOR A.J.?" OUR ENERGIES AND LIFESTYLE'S MUST BE RELATIVE TO WHAT IS BEST FOR A.J., ASHLEY, AND AUSTIN. WE MUST LIVE FOR TODAY AND SQUEEZE OUT WHATEVER JOY AND FUN THERE IS. WE STILL MUST EXPERIENCE LIFE AND ALL (YES,ALL) IT HAS TO OFFER.
ENOUGH.
AUSTIN RIVER'S HERNIA SURGERY IS ON MONDAY JULY 28, 2003. HE IS TRYING, THROUGH HUMOR, TO NOT BECOME WORRIED OR SCARED. OF COURSE, OUR LITTLE EMOTION FILLED AUSTIN, IS PROBABLY AS AFRAID AS HE HAS EVER BEEN. HE IS A BIG TOUGH GUY ON THE OUTSIDE BUT HAS SUCH A KIND, THOUGHTFUL, AND EMOTION FILLED HEART. PLEASE PRAY FOR HIM... PLEASE.
WE HAVE BEEN GRANTED WITH SO MANY KIND PEOPLE IN OUR LIVES. OUR LIFE-LONG FRIENDS AND THE RONALD MCDONALD HOUSE "NETWORK OF FRIENDS" HAVE BLESSED OUR LIVES. YOU WILL NEVER, EVER, EVER KNOW HOW MUCH YOU MEAN TO OUR FAMILY.PLEASE CONTINUE TO KEEP US IN YOUR PRAYERS. IF YOU HAVE NOT REACHED US IN ANY WAY,SHAPE, OR FORM DURING OUR 15-MONTH "LONG STRANGE TRIP"... LOSE YOUR FEELINGS OF GUILT AND JOIN US. WE HAVE NO ANYMOSITY NOR RESENTMENTS... WE ONLY WANT THE KIND SUPPORT OF FRIENDS AND LOVED ONES.
GOOD-BYE AND SWEET LULA-BYES,
THE TOIVOLAS
AJ
ASHLEY
AUSTIN
DAVE
DEB
Saturday, July 19, 2003 11:20 PM CDT
Hello everyone. First thank you for continuing to wait patiently with us. We finally have found out some news.
The chemoembolization has shrunk the tumor off the vein and the liver is slightly smaller. Addison has gone almost a month without any chemo (usually this is very dangerous for his cancer spreads like wildfires.)
They think they did a "number" on this tumor. The embolization appears to be the reason why the cancer is not growing and has fought the cancer off of the hepatic vein and artery.
Addison had both lung surgeries in Dec. He still had some spots in January. The doctor says they haven't grown or changed in anyway. They are still going to remove all the spots again. This is the safest thing to do.
So on Wednesday, Addison will (again) go through this horrible lung surgery. They will have to break a rib and go in that way. If there is any "tumor" they will do the other lung too.
In 3 to 4 weeks after that they will attempt to schedule the liver transplant. WOW....We have finally made it to the next journey!
We would like to ask all who read A.J.'s journal for a favor. We are in need for prayers for this next phase.
I (mom) am hoping to be the donor of the liver. I will begin a huge testing and physical examination etc... to see if I will match. If I am not the match it could take up to 2 years to get a donor. We are so hoping that I will match.
We are meeting with the transplant team on Tuesday and start this process. Addison will go in for lung surgery on Wednesday, hopefully we will be out by the end of the weekend.
Then on Monday (June 28, 2003) Austin will have his surgery. He is a little scared. Addison is telling him what will happen and that it will be okay. It is so cute to listen to the 4 year old tell all of us the what, where, why, and when of hospital procedures. They know way to much!
Ashley is going to a birthday party tomorrow. She is so excited! She said, "It is like when we lived at home." (Normal) is what she meant.
WE want to thank everyone for all the prayers and support you have given us. WE know WE say that every time but it is important for us to let you know that we are so thankful for all of you and your support.
Just to update all on the 3 people we asked for special prayers. Steve Jensen from Hibbing passed away last week. My cousin Susie passed away last week also. My mom is feeling a little better but they haven't found out any of the results yet. It's a waiting game.
Thank you, again, for your support. PLEASE continue to pray for us!
WE would like to say Good bye to my sister Sue. She and her family moved to London on Thursday and we didn't get to see them before they left.
We had a great week with many visitors. Addison had a special visit with BATMAN and Batman's mom. We always love to see you. Grandpa Don and Grandma Teri came for a visit and we love to see them. We wish they could have stayed longer. We miss you already!
Thanks for checking in and loving us. God is Great.
Deb and family
Wednesday, July 9, 2003 9:57 PM CDT
UPDATE: Dr. Weigel called tonight and said they couldn't get a good look from the scans, so we are going in at 8 a.m. for more scans and we will have an answer by Tues. or Wed. next week. Have a great weekend. Let you know more when we find out more.
Where or where do I begin. The end of June was so busy. Dave went up north to give our home some TLC for us.
My mom came to stay and help me out. She went home to the loss of her doggy, EBONY. Then she had a couple of dizzy spells and collapsed. (This was very scary for us,her children and loved ones.) She has been going through tons of tests and they haven't found anything yet. Please say a prayer for my mom... please!
We are still waiting on Addison's Cat Scans, they completed two weeks ago. Today was the day they were meeting with the surgeons to decide what is the next step. We will let you all know when we find out anything.
Addison is feeling great. We have been getting Magnesium everyday for a month and they say it takes about two months to get it restocked.
Addison is doing great with his hearing aids but doesn't wear them all day yet. We get half a day in and then they hurt him. What a difference they make!
Addison had a special visitor over the 4th weekend. His best buddy Lucas (Kristin and Josh) came for a fun afternoon of playing. When they left Addison wouldn't say goodbye. After they left I asked Addison why he didn't say "bye to your buddy"? Addison said "He didn't want his buddy to go home and not live at the house with him anymore." Then he went on to ask when he gets to go home. Boy that can break your heart, It doesn't matter how many times they ask...
This week Austin had a sudden visit to the doctor and we had to go onto the urology department. Austin will be having a left angular hernia repair with the possiblity of the right angular hernia also needing repair.
I don't want to get too personal about it but if your a male (left testicle is enlarged the size of a softball) you will understand the problem. He is having surgery on July 28th. If you have a chance to send him a get well card he would really love it. Since the doctor told him that he would be getting cards and ice cream and anything he wants. He thinks it might be cool to have the surgery.
Ashley is almost done with tennis lessons. She really loves it. Thanks to all of you in the class for letting Ashley learn with you! Ashley plays with the college kids at the U. Thanks Coach!
We also moved to a new apartment at the Ronald McDonald House. We are in Room 331. We unpacked over the 4th of July weekend. We did take out time to walk over to the Franklin Bridge to watch the fireworks, with the company of some other families. The fireworks were beautiful.
Thanks for checking in. WE will update on Addison as soon as we find out anything. God bless you all.
Thank you for all your support and the love you share with us.
Deb and family.
P.S. Please say an extra prayer for our friend Steve J. from Hibbing. My cousin Susie is also fighting a battle with liver cancer and is not doing so good. Thank you all.
Friday, June 27, 2003 8:37 PM CDT
HELLO AND WELCOME TO A.J. TOIVOLA'S JOURNAL OF HIS BRAVE AND DYNAMIC JOURNEY WITH LIVER CANCER. WE URGE YOU TO SIGN IN AND SAY HI!
WHEN A CHILD HAS CANCER THEIR LIFE CHANGES. YET, THEY CONTINUE TO BE CHILDREN. THEY CONTINUE TO PLAY, DRAW, COLOR, FIGHT WITH THEIR SIBLINGS AND "ALL IN ALL" ENJOY THEIR LIVES. THIS IS REALLY AN AMAZING PART OF THE JOURNEY. THE JOY OF BEING A CHILD... THE SAME WANTS AND CONCERNS IN THE MIDDLE OF THE HEALTH CRISIS OF THEIR LIVES. FOR ALL, IT IS TRULY A LIFE AND DEATH STRUGGLE. THEY DON'T QUIT. THEY DON'T STOP LAUGHING AND SMILING... THEY ENJOY THE LITTLE THINGS... THEIR FAMILIES AND THEIR FRIENDS ESPECIALLY!!!
IF WE CHOOSE, WE CAN ALLOW THIS "CHILDHOOD CANCER THING" TO TEACH US MANY VALUABLE LESSONS. A.J. HAS HAD AN ENORMOUS IMPACT ON OUR FAMILY. HE HAS INFLUENCED US ALL IN MANY POSITIVE ASPECTS OF LIFE. HE HAS LEAD OUR FAMILY TO A MORE "LOVING" PLACE. WE ENJOY EACH OTHER MORE, WE HANG OUT TOGETHER MORE OFTEN AND WE SAY "I LOVE YOU" TO EACH OTHER MUCH MORE OFTEN. A.J.'S "GIFT" WE CALL IT...
LIFE IN THE RONALD MCDONALD HOUSE IS INTERESTING AND AMAZING. IT IS A VERY INTENSE PLACE. AFTER ALL, ALL OF THE FAMILIES HERE HAVE A CRITICALLY ILL CHILD. THE MINNEAPOLIS HOUSE CAN ACCOMODATE 48-FAMILIES. IT IS A VERY LARGE COMPLEX. WHILE THERE ARE SOME FRUSTRATING MOMENTS LIVING WITH SO MANY PEOPLE, IT IS HERE WHERE WE ARE ABLE TO FIND COMFORT. THE PEOPLE ARE ALL ENDURING A VERY SIMILIAR FATE. THIS ALLOWS EACH FAMILY THE FREEDOM TO MOVE ABOUT THE "HOUSE" WITHOUT CONSTANTLY HAVING TO EXPLAIN, DISCUSS, AND/OR DESCRIBE THEIR CHILD'S ILLNESS. IT IS A PLACE WHERE ONE CAN SAY "AAAAH" WITHOUT BEING THREATENED IN ANY WAY SHAPE OR FORM. WE SURELY KNOW NOW WHY THEY CALL IT "THE HOUSE THAT LOVE BUILT".
AS FOR OUR FAMILY, WE HAVE NOW BEEN SEPARATED FOR NEARLY 8-DAYS. WHILE DEB AND THE KIDS ARE ENJOYING A VISIT FROM THEIR WONDERFUL GRANDMA MARALYN AND A SPECIAL VISIT FROM SOME "HOMETOWN" FRIENDS, I AM "UP NORTH" FINALLY WORKING ON OUR LOVELY 91-YEAR OLD HOME. WHEN I SAY "FINALLY" I MEAN FINALLY! SINCE MOVING INTO THE HOUSE I HAVE DONE VERY LITTLE. I COULDN'T MAKE IT TO THE BATHROOM LET ALONE PAINT, CUT, FIX, ETC. OUR HOUSE WAS MADE A HOME, PRIOR TO A.J.'S ILLNESS, BY THE SINGLE-HANDED STRONG WILL AND LOVE OF MY WIFE DEB. SHE HELD US TOGETHER AND BELIEVED THAT WE WOULD SOON BE A "NORMAL" FAMILY.
WHILE "NORMAL" IS OUT, I HAVE LITERALLY CUT GRASS, RAISED A NEW AMERICAN FLAG IN OUR YARD, PAINTED WALLS, CLEANED GARAGES, CUT DOWN TREES, ETC. ETC. FOR THOSE MALES OUT THERE WHO ARE SAYING "BIG DEAL"... YOU ARE EXACTLY RIGHT... IT HAS BEEN ONE OF THE BIGGEST DEALS IN MY ADULT LIFE... THAT I CAN REMEMBER ANYWAY!!!
A.J. TOIVOLA IS A MIRACULOUS HUMAN-BEING. HE HAS TAUGHT US SO VERY MANY LESSONS. HE IS AMAZING AND HAS SHOWN US ALL THE MEANING OF FAMILY. ASHLEY AND AUSTIN ARE A TREMENDOUS SISTER AND BROTHER. THEY CARE SO DEEPLY ABOUT THEIR BROTHER. AT THE SAME TIME, THEY HAVE BEEN ABLE TO GET ON WITH THEIR OWN LIVES AND ACTIVITES.
I HOPE THIS ENTRY ALLOWS YOU TO READ SOMETHING WORTH WHILE UNTIL WE ARE PRESENTED WITH ANOTHER A.J. SPECIFIC ENTRY BY DEB. WE ARE ALL AWAITING THE LATEST TEST RESULTS.
PEACE,
DBT
Wednesday, June 18, 2003 9:22 PM CDT
Hello everyone.
We had a busy day today. Started with blood products. Next, a Magnesium transfusion. AJ has been low for a month and a half. So we get this every other day. Platlets are at 23 so we got a load of them.
Then it was over and to the audiology dept. Addison got his hearing aids today. He was a little (alot) upset when he found out they were forever. Addison thought he would get to leave them behind when we went home to the gray house. (that is home in Gilbert).
Addison has a line that goes into the heart to give all his medicines and chemo through. That will be removed when he is cancer free. So, he thinks all his knew things stay here when we go home. He did great like always.
The hearing aids are green and blue. They look great on him. He kept them in all day. I think he can really hear better with them.
Ashley and Austin are having a great summer break.
The plan is to let us out of the hospital tomorrow if all goes well. We will continue our antibotics at home. Nothing has grown in our blood cultures. We are hoping the one that brought us in on Sunday was contaminated. Since we came in Sunday nothing has developed.
Addison had some great people visit today. Thanks Jack and Frank you are great with the kids. Thanks Mary, Kara, and Jimmy... lunch was great. It was great to meet you.
Deb and family.
Sunday, June 15, 2003 11:40 PM CDT
To our surprise Addison was discharged Friday night. We went home to the RMHouse. Addison was still so very moody from the steriods. Before we left the hospital they took blood to do a culture exam just for safe measure.
Today,Sunday, we have returned to the hospital because the culture came back positive. Addison was not too happy with the return.
We did get our Fathers Day celebration in. HAPPY FATHER'S DAY DON, BRUCE, DICK, AND DAVE. Happy Fathers Day to all DAD's, hope you all had a great day.
Ashley is having a great summer vacation so far. She has violin lessons, tennis and soccer. Austin had his first peer birthday party (a friend from school), he had a great time. He plays soccer and T-ball just ended.
I would like to ask for some extra prayers from everyone. I have a "homeboy" as they say in the hospital here in Mpls. His name is Steve. I grew up on Bunker Road (Hibbing, Minnesota) with him and he could use some prayers (he was diagnosed with cancer). Thank you everyone. God bless you all.
I hope you all know how important each and everyone of you are to us. We could not continue this battle without all of you.
I would also like to send out a special thank you to Matt L. and his church for doing the Rootbeer Float Fundrasier for Addison. It's funny because AJ's favorite thing now, after chemo, is a Rootbeer Float. We have to drive nearly everyday to get him one.
Deb and family
Thursday, June 12, 2003 7:50 PM CDT
Hello everyone. Thank you for your patients. I am so exhausted I can barely think. So if this sounds funny you know why.
Addison went through his next chemoembolization on Wednesday. We went in at 12:30 and waited and waited. Finally at 5:00p.m. they took him back. Short version, he went to intensive care and stayed all night. They woke him around seven in the morning and took the tubes out by 8:00a.m.
Addison is doing so good. I will update more later.
Thank you for all your prayers, please continue to pray for Addison.
God bless.
Deb and family
Sunday, June 8, 2003 12:21 AM CDT
G'DAY!... AND WELCOME TO THE HOME OF ADDISON JASPER (A.J.) TOIVOLA'S HOMEPAGE.
HAPPY BIRTHDAY GRANDPA DON!!!!HOPE YOU HAD A GREAT DAY. WE LOVE YOU!
HECK, I DON'T THINK THERE ARE MANY PEOPLE WHO HAVE THEIR OWN WEBSITE. NO MATTER HOW YOU LOOK AT IT... IT'S COOL...MAN!
DEBRA LOU'S LATEST UPDATES HAVE BEEN CAREFUL NOT TO DWELL ON THE NEGATIVE ASPECTS OF THE "CHEMOTHERAPEUTIC EMBOLIZATION" (YOU TRY AND SPELL THAT ONE!).
FROM WHAT I HAVE WITNESSED, THE "PROCEDURE" HAS TAKEN AN ENORMOUS TOLL ON BOTH "BABY AND MOTHER". CERTAINLY, THE "END GAME" HAS BEEN THE SLOW BUT SURE DEATH OF A.J.'S TUMOR. HOWEVER, THE ROAD HAS BEEN A VERY ROCKY ONE. NO QUESTION... THE MOST DIFFICULT SINCE THE HORRIBLE DAYS, UPON OUR ARRIVAL HERE, IN THE SPRING OF 2002.
A.J.HAS BEEN EXTREMELY ILL. FOR MOST OF THE PAST THREE (3) WEEKS, HE HAS NOT LEFT HIS FAVORITE BLUE CHAIR, HIS "MAMA'S" SIDE, AND HAS NOT EATEN SOLID FOODS. A NUTIRIENT "DRIP BAG" HAS BEEN A CONSTANT COMPANION. iN THE LAST DAY OR TWO (2) ADDISON HAS BEGUN TO EAT REGULAR FOOD. HE HAS EATEN HAM AND CHEESE SANDWICHES, RICE CRISPY BARS, A AND W ROOT BEER FLOATS, CHEESEBURGERS, CHIPS, ETC. , ETC. THIS HAS HELPED TO IMPROVE HIS SPIRITS AND GAIN THE STRENGTH TO DRIVE US ALL INSANE!!! WELL, THE REST OF MY FAMILY ANYWAY. I FORGOT I WAS INSANE BEFORE A.J. WAS EVEN SICK!!!
MOST "WELL-WISHERS", WHILE MAKING BLESSED COMMENTS OF SUPPORT, ARE VERY MUCH WRONG WHEN THEY SAY "WE KNOW WHAT YOU ARE GOING THROUGH". ESPECIALLY, WHEN THEY HAVE NOT HAD A CRITICALLY ILL CHILD.
GODBLESS ALL OF YOU!!! YOUR LOVE FILLED WORDS OF KINDNESS,ENCOURAGEMENT AND LOVE HAVE KEPT US "AFLOAT". WE COULD NOT CONTINUE ON THIS "JOURNEY" WITHOUT YOU... PERIOD!
AS I SIT HERE WITH THOUGHTS SWIRLING AROUND IN MY MIND (A DANGEROUS PLACE TO BE), I MUST HELP OUR SUPPORTERS UNDERSTAND A LITTLE BIT OF OUR "LONG, STRANGE TRIP" PERSPECTIVES AND INSIGHTS. I (DAVE)MUST PROMOTE THE NON-USE (PLEASE DO NOT!!! USE)OF A COMMONLY USED PHRASE FROM SUPPORTERS.
THE PHRASE IS: "IF THERE IS ANYTHING WE CAN DO FOR YOU... JUST CALL US AND LET US KNOW...".
DO NOT GET ME WRONG!!! WE ALL KNOW THAT THIS PHRASE ILLICITS NOTHING BUT KINDNESS, RESPECT, AND LOVE. HOWEVER, I HAVE YET TO MEET A FAMILY, GOING THROUGH THIS HORRID PROCESS, THAT WOULD ACTUALLY PICK UP THE PHONE AND ASK SOMEONE FOR "A BAG OF GROCERIES", "A GIFT OF MONEY", "HELP IN WATCHING THE CHILDREN", ETC., ETC., AND ETC.
MOST PEOPLE ARE FAR TOO RESERVED, STUBBORN,AND SIMPLY TOO HUMBLE TO EVER, "IN A MILLION YEARS"...GIVE SOMEONE A CALL... AND ASK FOR HELP!
SO... IS THERE A BETTER WAY TO HELP? WELL, WE HAVE WELL-WISHERS WHO "EVERY ONCE IN A WHILE" COOK A HOT MEAL FOR OUR FAMILY, SEND US TICKETS TO CERTAIN LOCAL EVENTS, PROVIDE OUR FAMILY AN OCCASIONAL TARGET GIFT CARD, DROP OFF A BOX OF DOUGHNUTS, CUT OUR GRASS IN GILBERT, HOLD FUNDRAISERS AT THEIR CHURCH, OR SIMPLY WRITE US A POEMS AND LETTERS OF SINCERE LOVE AND KINDNESS.
PEOPLE FEEL AS THEY HAVE GIVEN DIRECTLY TO A.J. AND HIS FAMILY AND THEY ARE FREE FROM THE GUILT OF NOT "DOING SOMETHING" FOR A.J. AND HIS 'FAMILY. WE HAVE RUN INTO SO MANY PEOPLE WHO FEEL SO ASHAMED, GUILTY, AND SADDENED THAT THEY HAVE DONE NOTHING FOR A.J.. FIRST, WE NEVER THINK UNKIND THOUGHTS ABOUT OTHER PEOPLE ANY LONGER. WE TRY TO LOVE AND EXTEND OUR SELVES TO OTHERS. HOWEVER, YOU CAN RID YOUR SELF OF SHAME AND GUILT BY LITERALLY TAKING ACTION! THEN YOU HAVE DONE SOMETHING AND CAN SLEEP BETTER... REMEMBER, NO ONE IS GOING TO FOLLOW-UP ON CALLING YOU FOR HELP.
SPECIAL THANKS TO THE "DAR" FAMILY AND "Q" FOR THE HOT MEALS [GOURMET DINNERS AND WALLEYE FISH FRIES], TO THE J. SCHWARTZ FAMILY FOR TARGET CARDS AND TO THE MANY PEOPLE WHO HAVE MAILED US CALLING CARDS... YOU ALL GET THE IDEA!! ... AND HAVE LITERALLY MADE A DIFFERENCE IN A.J.'S LIFE...
WHILE THIS HAS PROVEN TO BE AN ANXIETY FILLED AND EXHAUSTIVE STRETCH OF TIME, WE FEEL BLESSED DIRECTLY BY GOD, HIMSELF, FOR THE DEATH AND DYING OF ADDISON'S CANCER.
WE ARE SO GRATEFUL TO HAVE HIM HOME ON A SHORT 4-DAY PASS FROM THE HOSPITAL. HE GENERATES EXCITEMENT IN OUR FAMILY AND MAKES OUR FAMILY WHOLE. FOR THIS, WE ARE FILLED RESPECT AND LOVE FOR OUR SAVIOR: JESUS CHRIST!!!
ADDISON JASPER WILL RETURN TO THE HOSPITAL ON TUESDAY OR WEDNESDAY AND GO THROUGH ROUND TWO (2) OF THE CHEMOEMBOLIZATION. THE THEORY IS: IF THE FIRST ONE WORKED THEN THE SECOND ONE WILL REALLY KICK SOME AXX! OUR LITTLE GUY IS SO VERY TOUGH. HE HAS OPTIONED HIS HEARING, HIS BODY'S GOOD LUCKS, AND HIS BEAUTIFUL LONG FLOWING GOLDEN LOCKS TO WIN THIS BATTLE. HE IS A CHAMPION!
THE ASHLEY AND AUSTIN UPDATE:
FOR ASHLEY AND AUSTIN THE END OF THE SCHOOL YEAR IS NEAR. THEY HAVE BUT TWO (2) DAYS LEFT OF THIS SCHOOL YEAR. MAN, IS THERE ANY BETTER SENSE OF RELIEF THAN THE LAST DAY OF SCHOOL? UFTA!!!
THEY HAVE BEEN SPENDING PARTS OF THEIR LAST DAYS ACTING IN PLAYS, VISITING ZOOS, AND STUDYING (AND PLAYING AT) LOCAL NATURE PRESERVES. THEIR "NEW" SCHOOL HAS MADE A TREMENDOUS IMPACT ON ASHLEY AND AUSTIN.
THE TUTTLE COMMUNITY SCHOOL IS JEWEL OF A SCHOOL. IT HAS EXTRAORDINARILY HIGH ACADEMIC STANDARDS, FOCUS' ON ARTS AND MATHEMATICS INTEGRATION ACROOS THE SCOPE OF THE CURRICULUM, AND IS "ABOVE THE BAR" IN ALL AREAS OF THE COMMUNITY'S, STATE'S AND NATIONAL STANDARDIZED TESTING RESULTS.
THE FACULTY IS HAPPY, CHILD CENETERED (NOT CONTRACT CENTERED)AND GOES THE EXTRA YARD FOR IT'S CHILDREN AND THEIR FAMILIES. THIS IS WHY IT IS AN AWARD WINNING SCHOOL! AGAIN... WE HAVE BEEN BLESSED!
ASHLEY IS TAKING REGULAR VIOLIN LESSONS, IS SIGNED UP FOR SOCCER, AND WILL HAVE SOME INDIVIDUALIZED INSTRUCTION IN TENNIS AND SKATING THIS SUMMER.
AUSTIN IS A GIFTED ARTIST, WAS 7 FOR 7 IN HIS FIRST SEASON OF T-BALL, AND LOVES TO PLAY "CATCH" FOR HOURS AND HOURS. HE IS PASSIONATE ABOUT FOOTBALL, BASKETBALL, AND NINTENDO. HE EVEN HAS HIS "PAPA" PLAYING VIDEO NHL HOCKEY. IN ONE YEAR I HAVE BEEN LED "KICKING AND SCREAMING" TO THE USE OF A CELL PHONE AND(NOW) NINTENDO... MUST BE ALL OF THOSE SHOCK TREATMENTS
THEY BOTH LOVE TO SPEND TIME WITH THEIR "MAMA", "PAPA", AND A.J. THEY ARE AS "WILD AND CRAZY" AS ANY OTHER EIGHT (8) AND SIX (6) YEAR OLD.
THEY HAVE GAINED MANY NEW FREINDSHIPS THROUGH THEIR ASSOCIATIONS WITH THE RONALD MCDONALD HOUSE, THE VAN CLEVE PARK, THE UNIVERSITY OF MINNESOTA'S CHILDREN HOSPITAL, AND THE TUTTLE COMMUNITY SCHOOL. THEY HAVE ADAPTED WELL TO A SITUATION THAT COULD HAVE BECOME A LIVING NIGHTMARE!
DEB, WELL LET'S FACE IT, HAS BECOME THE CONSUMATE MOTHER. SHE HAS GAINED AN ENORMOUS AMOUNT OF CONFIDENCE AND POISE ON THIS JOURNEY. SHE HAS BECOME SOMEWHAT OF A LEADER AMONGST THE MOTHERS OF THE CRITICALLY ILL/CANCER LADEN CHILDREN AND HAS BEEN THE "CORNER STONE" OF OUR FAMILY. SHE HAS REMAINED VERY POSITIVE, UP-BEAT AND OPTIMISTIC THROUGHOUT THIS ENTIRE EXPERIENCE... AND HAS CONTINUED TO LOVE AND LEAD HER FAMILY.
... AND DAVE... WELL... HE'S JUST DAVE! SURPRISINGLY ENOUGH, HE HAULS THE KIDS ALL AROUND THE CITIES TO THEIR ACTIVITIES, SPENDS TIME VOLUNTEERING AT THEIR SCHOOL, MAKES THE DAILY LUNCH BAGS, AND CLEANS HOUSE DAILY. THIS, MY FRIENDS, IS PROGRESS! HE ALSO RELISHES IN THE WEEKLY MULTI-HOUR NATURE WALKS HE DRAGS HIS KIDS THROUGH... HE CLAIMS THAT THEY "LOVE IT"!!! HE NOW HAS BEEN SEEN DRIVING A... $750.00... 1984 MAZDA GLC STATION WAGON... THAT HIS FAMILY NAMED "SPONGE BOB". BOB AND DAVE HAVE BECOME FAST FRIENDS!
"SMALL WHEEL TURN BY FIRE AND ROD... BIG WHEEL TURN BY THE GRACE OF GOD... EVERYTHING THE WHEEL TURNS 'ROUND AND ROUND' IS BOUND TO COVER A LITTLE MORE GROUND..." - "THE WHEEL" SONG WRITTEN AND PERFORMED REGULARLY BY THE GRATEFUL DEAD UNTIL J. GARCIA'S DEATH
EACH DAY, BY THE GRACE OF GOD AND YOUR SUPPORT, WILL FIND A.J. COVERING A LITTLE MORE GROUND...
GOD BLESS,
D.T.
Monday, June 2, 2003 1:38 PM CDT
Well we got some fabulous news! I can't wait to tell you all! I'll save it for last just for the fun of it. HEEHEE...
Addison has shown some hearing difficulty. He can no longer hear the pumps beep (which are so loud and annoying it wakes you out of a dead sleep.) The T.V. is always so loud. You get the idea. Well, Friday we had a test done and today (Monday) we were fitted for hearing aids. It's a bad side effect of the Chemotherapy.
Sunday we got out on pass and thought it would be great to go see the "Finding Nemo" movie with the kids. We didn't take into consideration he could only hear certain things. But in two weeks he will be able to hear better (when he gets his hearing aids.)
The fevers are still with us and the cough is lingering too. They don't know why, what, where, and for how long it will linger. We are getting out on pass from the hospital for 2 hours today.
Are you still waiting to hear the really good news? The chemoembolization is working. The AFP test (this is a very important test for us.) last month it was 72,000. The normal range to be cancer free is under 10. The test was done on Thursday, it was 18,000. This is amazing!
They want to do another chemoemboliztion but the fevers and cough are holding us up. Hopefully, that will improve and go away.
We are patient and the prayers are wonderful. Please continue to pray for AJ. The miracles continue everyday and we are so thankful.
Ashley and Austin are doing great. They got alot of play outside time this weekend. Seven days left of school. Pray for them to be strong and make it through this most stressful time of their life, too.
They are great kids. They do very well with changes. Which they have had to learn all about in there short lives.
Deb and family.
Thursday, May 29, 2003 11:21 PM CDT
Short update.
Today, Addison went to OR for the removal of his Hickman line and replaced with a pic. line. Addison also had his sinuses flushed and tapped.
You know you have been in the hospital too long when you are in the Pre-Op. waiting area and all the nurses come over to see "Batman" and see if everything is okay. We are so grateful for all the wonderful people who work in this hospital. Addison did a great job. He came back up to the room at about 5:00p.m. He did have a fever tonight. It could take awhile to see if the Hickman line was the cause of fevers.
Austin had his first T-ball game tonight and did great. He had 3 hits and scored 3 runs. He was so excited to tell me. Austin's class went to the Como Zoo today for a field trip.
Ashley had a school play today. Sadly, she was in scene II. They only did scene I do to a lack of children knowing their lines. She did get to do the songs and carry signs out. Ashley has a field trip tomorrow to a farm. They go to school until the 10th of June.
Addison loves to see his "sissy" and "broder" when they come up to see him. They are all great kids. We are so proud of them.
We will let everyone know how the fevers go from here. Hopefully, they will go away. Addison ate a fruit rollup and some macaroni and cheese today. We are starting to go in the right direction.
Deb
Tuesday, May 27, 2003 9:16 PM CDT
Sorry it has taken so long.
We had a quite non-eventful Memorial Day weekend. Addison perked up over the weekend. He did alot of talking and playing in "his" chair. He is weak so he doesn't like to walk to much.
AJ is being fed through his line. Still no eating but the good sign is when he asks for food.
He is still having fevers every 4 hours or so. They did "head to toe" scans again on Sunday which showed no changes. There is nothing growing in his blood cultures. The doctors are unsure why AJ is having the fevers and cough.
They are stopping all antibotics today (5/27) to see what happens. Sometimes antibotics cause fevers. It's the body reacting to them.
In a few days, if the fevers stop, that will be good. If not, we go into the surgery room and have AJ's HickmaN line taken out. They will also flush and biopsy the sinuses.
If they take out the Hickman he will have a pic line put in his arm. AJ hates these in his arm.
I just want my sweet baby to feel better. Thank you for checking in on us.
For the good news: Thank you all for praying for Addison's best buddy Lucas. Your prayers worked and Lucas was sent home from the hospital and is free for awhile. He was in the hospital since January. I saw Lucas today and he was even eating Doritos. He was so excited. He told me was going to eat them all. Then he said "they go into my stomach". This sweetie hasn't eaten for almost a year. We are so proud of you Lucas...
God bless everyone.
Deb and family.
Ashley and Austin are doing great. They went to the park tonight with another RMH family. Thank you Donna for helping us out.
Thursday, May 22, 2003 8:25 PM CDT
Hello A.J. fans! A.J., his brother Austin, and I are yelling at the T.V. and the Scoobie-doo mystery series.
A.J. is replaying a scene were Scoobie-doo ate too much and let out a huge "burp"! Fake "burp" laugh until we cry, fake "burp" and laugh until we cry... you get the idea! It's a "guy thang"!
Today, Saturday May 24, 2003, turned into a great day for Debbie. Her dear friends Becky and Colleen Maki are in town and took she and Ashley out on the town. One can not measure the importance of such forays out of the hospital for the prime caregiver. A little rest and relaxation while enjoying the company of dear friends. They are still out on the town in the"cement jungle" as I write this update.
A.J. continues to ail. He is not eating, moves very little, and has a terrible cough. Thankfully, his lungs appear to continue to be clear. He has allowed his brother and I to cuddle with him and give him "lots of kisses"!!! It appears that we will be "holed-up" in the hospital through the remainder of the long weekend. We've spent our share of "holidays" in this type of environment.
My dear friend, duck hunting partner and wedding day Best Man underwent extensive spine surgery at a local Twin Cities hospital. The sugery was on Monday but he did not get out of intensive care until Thursday. Let's pray a little for Hibbing, Minnesota's famed Mike "Dugan" Degnan. We are so sorry to hear of your continuous physical setbacks.
We pray for his speedy recovery. He is a truly wonderful human-being. Give him some of your strength through prayer!!!
As I have said many times, "everyone you meet on the street is living a very difficult life"... so smile at them, open a door for people, and say hello... you never know who you may save by your kind words and gestures.
Deb has become the "Queen of the computer screen" and is doing a wonderful job of keeping our readers updated with the latest news from A.J's "long strange trip". For now, so long!!! "Crumpett"
Just a short note to let you know how things are progressing.
Addison is still very sick and still running fevers. We had a CT scan of the liver there is NO absess. This is good. He had a xray of the sinus they think that is okay. Today he had a Lung xray and that also was clear. He has been coughing so bad. Feeling nausea...just yuckie. We are hoping it is just a viral infection that needs to play out.
Ashley and Austin are keeping us busy with end of the school stuff. Tommorrow they have Park Day. Dave will be a helper and if I can get a volunteer to come to the hospital I will stop in for a quick pick.
Thank you for checking in on us. We are so grateful for all your prayers etc...
God is Great.
Deb and family
Tuesday, May 20, 2003 11:25 PM CDT
Hello everyone....
Addison is feeling..well...yuckie. The procedure made him have fevers for two days straight. The pain was there for several days and still is. It is much more mild today. Monday we were going to be discharged but due to the pain meds they said NO. So today Tuesday...In the morning they said we could go home. Addison had a wonderful cough so we had to get a chest xray first. It was clear so Addison got blood and off to the RMhouse we went.
Today was Dad(Dave) and Mom (Deb)'s anniversary. Dave was sick in bed. He had to stay away when we got home. Happy Anniversary DAVE. I hope you feel better tomorrow. Needless to say our visit to the house was short. Addison spiked a fever of 102.9. Guess where we went? Back to the hospital.
So in the morning we will have a CT scan and a sinus xray. There could be an absess in the liver from the procedure. Addison is getting Tylenol every 4 hours and all the other stuff they give him. He still hasn't eaten since last Thursday. Drinking well sip here maybe 6 hours later he takes another sip. Hopefully that will pick up. The steriods have stopped today so the mood swings should be over.
With our luck in the holiday or special day category we should be in the hospital until after memorial day. We haven't had the pleasure to be out for any in a year. Sadly, Dave is spending the night alone. The kids are here with me. Soooo Sorry Dave...Maybe next year we can do something.
As always we are so thankful for all the support from you.
Everyone who checks in on us,etc.... If you have time please sign in.
Ashley is in a play at school. Austin was able to meet Randy Moss. He loves Football and BASKETBALL. They are busy with the end of the school stuff and beginning of summer stuff. Austin has his first Tball game on thursday.
God is Great...
Deb and family
PS
I LOVE YOU TOO DEB. 9-YEARS AND YOU STILL LIKE ME. THAT, IN IT SELF, IS A MIRACLE. MY MEMORY IS A BIT SCARCE BUT I KNOW THAT I WAS LED TO YOU (OTHER THAN BY PAT RENDLE) BY A HIGHER POWER WHO WAS CERTAINLY WATCHING OVER ME. MANY THOUGHT THAT I WOULD END UP WITH A HIGH FALLOOTAN PROFESSIONAL TYPE (NO DISRESPECT INTENDED)BUT I HAVE ALWAYS BELIEVED IN A SIMPLE LIFE... ONE THAT KEEPS THE KIDS WITH THEIR MOM AND DAD AND NOT IN DAY CARE (AGAIN NO DISRESPECT INTENDED). BECAUSE OF MY WIFE... WE HAVE BEEN ABLE TO CARVE OUT A PRETTY GOOD LIFE AND AS STRANGE AS IT SOMETIMES GETS... HAPPINESS DOES APPEAR TO BE ATTAINABLE.
THE WHOLE THING IS IN THE SIMPLICITY. LETTING GO OF THE SMALL IRRITANTS AND MOVING TOWARS A PLACE OF SINCERE RESPECT FOR ONE ANOTHER. AJ, AND YOU HONEY HAVE GIVEN ME THE ABILITY TO GET TO THIS GOAL. WE CAN, AND WILL, MAKE IT ANOTHER 9-YEARS.
YA' KNOW RESPECT IS ESSENTIAL IN ALL OF THIS. I HAVE THE HIGHEST REGARD FOR YOU MY LOVE. IT IS THAT SIMPLE.
HAVE YOU EVER WATCHED THESE TV SHOWS WERE A PERSON CAN COMMUNICATE WITH OTHERS ON THE "OTHER SIDE"? CAN YOU IMAGINE HOW WONDERFUL IT WOULD BE IF THOSE WHO HAVE PASSED CONTINUE TO BE RIGHT HERE WITH US IN SPIRIT. MAN, THAT IS A COMFORTING THOUGHT. WHAT A WAY TO SHED ALL THE YEARS OF SORROW AND PAIN RELATED TO THE DEATHS IN ALL OF OUR LIVES. WHILE THEY ARE NOT RIGHT HERE IN PERSON... WELL YOU GET THE POINT...
THE SCHOOL AUSTIN AND ASHLEY ARE ATTENDING IS REALLY A FINE PLACE. THE SCHOOL HAS WON A MATHEMATICS AWARD FOR DOING BETTER ON THE MINNEAPOLIS PUBLIC SCHOOLS BASIC STANDARDS TEST. THE INCORPORATION OF THE ARTS IS A VITAL INGREDIENT IN THEIR PROMOTION OF LEARNING. THE TEACHERS, ON A WHOLE, ARE VERY ENTHUSIASTIC. IN GRADE 2, ASHLEY'S GRADE THERE IS HOMEWORK EACH AND EVERY NIGHT. THERE IS A REAL PRESS TO RAISE THE CHILDRENS STANDARDS AND IMPROVE THEIR ACADEMIC ABILITIES. THERE IS NO RELYING ON PAST ACCOMPLISHMENTS. THE SCHOOL PUSHES HARD EACH YEAR TO ENSURE THEY ARE A PART OF AN ELITE GROUP OF SCHOOLS. THE ONLY WAY TO KEEP IT GOING IS TO IMPROVE/RAISE THE STANDARDS EACH YEAR. FOR WHAT IT'S WORTH, I HAVE BEEN EXTREMELY IMPRESSED WITH THE PLACE AND I HAVE SPENT SOMETIME IN MANY, MANY , MANY DIFFERENT SCHOOLS. KEEP IN MIND THIS IS AN INTER-CITY SCHOOL.
ALSO, ON PARENTS NIGHT ONE CAN HEAR 7-10 DIFFERENT LANGUAGES BEING SPOKE. ADD THE LANGUAGE BARRIERS TO LEARNING AND THE HIGH TEST SCORES BECOME EVEN MORE IMPRESSIVE. AGAIN, THANKYOU GOD FOR DIRECTING US IN THE DIRECTION OF THE TUTTLE COMMUNITY SCHOOL.
ADDISON'S CANCER HAS LEAD OUR CHILDREN TO THINGS THAT THEY WOULD HAVE NEVER EXPERIENCED. THEY HAVE A DIFFERENT VIEW OF THE WORLD AND IT'S MANY DIFFERENT CULTURES. THANK YOU... AJ.
ON AND ON AND ON. THE DAILY EVENTS KEEP ON HAPPENING. UP AND DOWN,,, UP AND DOWN,,,, ONLY LEVEL WHEN IT'S ALL UNDERSTOOD THROUGH ALLOWING OUR CREATOR TO TAKE THE LEAD AND TAKE OUR WILLS AND HELP US LIVE. UFTA... WHERE WILL WE GO FROM HERE?
Wednesday, May 14, 2003 11:05 AM CDT
ANOTHER UPDATE: Addison is out of ICU and back on 5B. He has had a rough day. Lots of pain and feeling sick. He had a chest x-ray and it was clear. He has had some high fevers all day.
We were informed today that the chemo put in the liver is the same amount of chemo that is used to give him for the whole 96 hours. With everything that has happened with this procedure he is doing good. He still has smiles for mommy. We even did some nose kisses today. UPDATE: Addison is in ICU. His ordeal lasted 3 hours. He did great as usual. He will remain ventilated and sedated until 7:00p/m/. The cathetar went into the groin area and they must keep him still. So far he is doing good. More later.
Hello everyone. It has been a busy week. Friday, Addison went to the pre-op for a MRI/MRA scan. They had to put him under for this one. He did great. We came home from the hospital and took a nap. Then headed to Gilbert.
Addison wanted to see his house and the doctors said it was a perfect time to go. So off to the great Northern MN we went. Grandpa and Grandma Aas greeted us at the door with a home cooked meal. Thank you for all you have done we love you very much.
Addison looked at everything, pictures in every room and the toys. He didn't remember. It was a great night UNTIL....the fever hit.
Addison got a headache and the fever started the next morning. So we had to hurry and pack. Back to Mpls. and the hospital we went. Addison was very content with being back in his surroundings of the nurses and his hospital room.
We were discharged on Monday. Which brings me to my update. There is a plan in place.
Addison will go back to the hospital on Thursday morning at around 5:30a.m. He will have a procedure called "CHEMOEMBOLIZATION." It is usually done in adults. There are some high risks. They will put a cathedar up the vein to the liver, clot the blood, and put chemo into the tumorous spot and leave it there for awhile. The goal is to shrink this tumor off the veins and get the cancer small enough to cut out the liver for the transplant.
I will not go into the risk that could happen. We need to stay positive and pray for a GOOD OUTCOME. We love you all and thank you for all your support. PLEASE continue to pray for our little man. God bless us all.
Deb and family.
P.S. We will update Thursday night sometime. Thank you...
Ashley and Austin have a Academic Fair at school tonight. They are doing great in school. Ashley started violin lessons last night. Austin is in T-ball.
I also wanted to thank my Bible Study girls for always being there for me. I know we are far apart, you are always right there when I need it. Thank you for the best bunch of girlfriends. God is GREAT...
Tuesday, May 6, 2003 6:58 AM CDT
Good Day to one and all! You've made it!
YOU have arrived at the web page that explores the life and times of Addison Jasper Toivola (a.k.a. AJ/Batman).
We open today's forum by honoring the memories of three (3) of A.J.'s (and the rest of us)friends. In the past three weeeks we have lost three (3) young men of enormous character. The following have made their way to heaven:
Sammy
Jake
Mitchell
(Note: Due to confidentiality/security/privacy issues last names are not provided)
These great kids were outstanding people. They were loved by their families and by people from all over the world. They have, in a short period of time, made a significant difference in the lives of countless people. They are missed! So very missed...
We spent a great deal of time on "the road" last week. In an effort to make it to our beloved friend's memorial services, we were required to go to South Dakota and Iowa. As usual, the people we met along the way were unbelievably gracious. We are so very honored... so very honored... to be included in these people's lives. GOD works in mysterious ways... and may GOD bless you!
...and so it goes. "spinning wheel can't slow down... if the thunder don't get ya' then the lightening will"!!!
A.J. is having his kidneys and other major organs tested today (Tuesday May 6, 2003). Later in the week, he will be sedated and given an extensive MRI test that will (hopefully)provide the team of physicians, working on his case, a clear picture of how the tumor is integrated into the liver and the surrounding blood vesels and arteries.
If that ain't enough, A.J. will enter the hospital on Monday May, 12, 2003 to begin yet another round of chemotherapy.
In time, should the doctors not get a good enough view of what is going on in "Baby's" belly, they may have to perform another exploratory surgery to see what's going on "with their own two (2) eyes"!!! The road to recovery and a cure is marked by very hazardous conditions. The "little guy" performs like Sir Edmund Hillary on his successfull ascent up Mt. Everest. He is truly a "hard core" individual... "hard core" to the bone!!!
As for the rest of us, we are happy spring "has sprung"! Ashley and Austin are working diligently at completing their first experiences in the Minneapolis Public Schools and the Tuttle Community School. Along with the usual readin', writin' and rithmatic'... they are working on end of the year "plays" and other great year end experiences.
The Tuttle Community School is an extraordinary Public School. Simply awesome! Heck... and the test scores reflect this... they are nationally recognized (this year) for their over-all gains in mathematics. Our kids, of course, love recess and gym the best!!! (The apple does not fall to far from the tree... now does it?).
Aah... there is so much to say and so many different emotions to work through. You have made it possible for us to know that we are loved and that our lovely "Baby Addison" is being supported by the prayers and kind words from people around the globe. He has touched many lives.
Please take care of YOU and YOURS! Thank you for the impact you have made on all of our lives!!! Have a great day!
Love,
A.J., Ashley, Austin, Deb and Dave Toivola
Monday, April 28, 2003 11:56 AM CDT
We have some news; but first:
Thank you all for praying for our friend SAM. Sam went to heaven early Tuesday morning. Please say a prayer for the family. If you would like to check in on them and leave them a message go to: wwww.caringbridge.com/ia/sam.
Addison had his PET scan and we have some preliminary reports: I know you have all been waiting for the results, thank you for waiting with us. We finally got some good news, with good news also a little bad news. The good news first: The scan showed the live cancer is in the liver and the lungs have NO live cancer. The spots could be dead cancer or something else. HOORAY!!!!!!!!! The bad news is that the live cancer is in both lobes of the liver and scattered all over. It is not in just one area...The veins and artery's also have cancer around them. They need to get it off the blood vessels (area) in order to cut out the liver. So we still have no idea what the next steps are.
They have the transplant team and surgeons all trying to get a plan so they can determine what they are able to do. The problem with it being by the veins etc..is if they cut them he could bleed to death. So it is a very tricky surgery.
I have more good news or I think it is. Addison's AFP test was done again and it has gone down to 73,665.8..This makes us happy. The AFP is a test that determines if the cancer is growing "somewhere" in the body. The bigger the number the more the growth of cancer. Three weeks ago Addison's AFP was 96,000!
Addison is home from the hospital and is feeling better. He was very sick. It is so great to see him perk out of it. He still takes some long naps.
Ashley and Austin got to go to their cousin Owen's house for the day and play and be normal kids for a change. Thank you Dede and Walt. They love being with you all.
Thank you all for checking in on us and please sign in and leave us a note.
P.S. For those who ask for new pictures I promise I will provide some as soon as I learn how to do it! Thank you....
Deb and family
Tuesday, April 22, 2003 4:05 PM CDT
Hello Fans!!! YOU have arrived at Addison Toivola's Web Page. This journal entry continues to share A.J's "... long strange trip..." with YOU. No readers NO webpage. It is that simple...
As of 11:30 PM on Monday April 21, 2003, Addison returned to the the University of Minnesota Children's Hospital. After enjoying Deb's birthday and birthday "Dilly" bars, A.J. spiked a rather high temperature and the Oncologists/staff on floor 5B requested that he be admitted.
So... we got out of our "jammies",chomped down our "Dilly" bars, got Ashley and Austin Dressed, packed up Addison and we were off (again)to "the races"!
This was the "cap" of a very difficult 7-days. We attended the funeral of our dear friend Mitchell Chepokas, watched other sick children get "sicker" and lost our very dear South Dakota "cowboy" friend... Jake ... on Easter Sunday.
Jake was hospitalized for the better part of the last two (2) years. Sadly, he did not pass away because of the condition he came to Minnesota with... He died of an incurable form of Lymphoma he contracted during his recovery/procedures that saved him from the original diagnosis. "If it don't cure ya... it will kill ya!!! Jake was a brave and strong little boy. No adult could have survived a quarter of what he went through. He has been elected to the "Survivor's Hall of Fame.
Jake, Mitchell, and all our friends in Heaven... we will carry-on in YOUR memory... you laughed when you should have cried... ran when you were not supposed to walk... sang when they told you that you had no voice... and lived each day with energy and joy... when everyone around you struggled in their agony and against their tears... We TOO will fight, laugh, and sing....we will enjoy our todays!!!
As we have stated countless times, the relationships created on the pediatric "cancer" floor and with the families of the Ronald McDonald House, are extremely close. Our friends losses are felt deeply. Very deeply. The sensation can be likened to the deflating of an automobile tire.
This trip to the hospital was "made possible" by very low blood counts "across-the-board". So, today A.J. has spent the day in his huge green recliner. He has had multiple lines of medicine and blood "pouring" into him. He does not seem to be bothered in the least. He is sitting back and watching the movie "Toy Story" for the "50th" time in the last two days. We snicker, laugh and sing at all the appropriate places. This is one of those situations that having memory problems works to my advantage!!!
Addison Jasper's nurse just reported that his fever is now under control. He is taking in another "bag of water" (fluids)and is "slamming" a Diet Coke. Hey... it could be worse. You all ever heard of a "Jack-n-Coke"? That's all we would need!!!
So it goes. We feel a real sense of gratitude that you have taken the time to visit Addison's sight. Addison has touched the lives of people from all corners of the Earth. We stopped the letters from the "Aliens"... we could not read their hand-writing...
Do what is important. Remember, each person you pass on the street is battling problems... big and small... in their lives. Try to treat everyone you met with kindness and respect.
DO NOT SWEAT THE SMALL STUFF... DO NOT SWEAT THE SMALL STUFF... DO NOT SWEAT THE SMALL STUFF...
Life IS too short.
Love and gratitude mixed with a whole lot of respect,
DBT
Sunday, April 20, 2003 0:02 AM CDT
Today marks the one year anniversary of our arrival in Minneapolis. Addison and "Mommy" arrived by ambulance, with "Papa" driving down in the car.
That day seems so clear in my mind. Worrying about what was to come, how would Aj handle what was to happen? He had fear on his face.
It was the longest drive to the Cities. Our ambulance attendants were so wonderful. They didn't leave until they thought I was okay, safe and in my proper place (in this new place).
I was so scared, but tried to be strong for my baby. I worried about Ashley and Austin. They went to school like a normal day and Grandma Marilyn came to be with them in Gilbert. Would they be okay without mom there with them? I had only been away from the kids a night or two... EVER! They would become homesick... I missed them so much that I would return home before my scheduled return!
We were welcomed to the Oncology floor 5B (at the U of M Children's Hospital) by very loving and caring nurses, doctors,etc....They have been wonderful throughout this journey.
Addison started with many tests and surgeries to find out exactly what he had. It took only days and we sat in that room with the doctors. We knew he had cancer. It still was like someone... Well... there is no way to explain the feeling of that moment! I only thought about God and prayed he would give us a miracle and heal our son.
Today one year later, we still believe that GOD will continue to heal Addison. He has given us many miracles in this first year.
Addison has been feeling very sick with this round of chemo. He still has no appetite but is drinking some fluids. Friday we went to clinic and his counts are low. His ANC is .3(300). The A.N.C. determines what fights off infections. It should be 1.0 (1,000). A.J.'s level is really bad! The worst part is that they are still dropping.
He also had to go to the day hospital and receive fluids. Today, the Ronald McDonald House had an Easter egg hunt. Ashley, Austin, and Josh (AJ's buddy Lukas's brother) had a ton of fun and shared their eggs with Addison and his buddy Lukas.
Addison wasn't able to go downstairs to find eggs. Lucas was still in the hospital and needed one of his "tubes" replaced. He is feeling better today.
On Monday we go to the clinic and AJ will have a platlet transfusion. They are doing the PET scan next week. I will update you and let you know what they turn up. I hope some good news!
God bless you all. Please sign in. We love to hear from you.
HAPPY EASTER AND SPRING.
Deb and family
P.S. It is with much sadness tonight at 4:15p.m. we lost another child to cancer. Jake was from south dakota. He was a very special boy. We will miss him. Please pray for his family and his brother Steve. Steve took care of his brother for most of the two years they were in Minneapolis. You couldn't have asked for a better brother.
Monday april 21st Addison is back in the hospital with a fever of 102.7. Antibotics are started and cultures have been taken. Update when we have more info.
Tuesday, April 15, 2003 8:13 PM CDT
Hello to all.
Just a short note.
I wanted to thank everyone for praying for our dear friends. Mitchell was one of those very special and dear friends of our family. He went to Heaven on Friday the 11th of April. Thankyou for all of your prayers. Please continue to pray for Mitchell's family to have strength to continue on. Mitchell had a celebration of his life on Monday night and it was soooooooo...WOW! What can a person say? It was so special and he was so special.
Please continue to pray for Ali she is also a special friend to all of the Ronald McDonald House family. She is doing better but is still in intensive care.
One other child is Jake he is from South Dakota and he is the greatest little guy. Remember this "little cowboy" in your prayers... too!
Addison's little buddy (Lukas) is doing much better and might even get out of the hospital at the end of the week. He deserves this so much! Please continue to pray for him!!!
Addison is doing fine. He has not taken this chemo as well as previous "rounds". He has lost his appetite, has been vomiting a
little each day, and is to tired to play for long. He lays in bed and plays for about 10 minutes or so and then he needs to rest. Your prayers are still very much needed!
They haven't done the PET Scan yet. I hope the test will happen soon! AJ's spirits are still great. Even when he is sick and vomits he still has kisses, smiles and hugs for his Mommy, Sissy,and "broder"(he teases PaPa and hords kisses from him until no one is watching!). He is our strength and when he smiles... there is nothing better!
Ashley is well in school and has lots of reading and math homework at night. That keeps her busy. She is very excited to buy some new earrings. On Saturday her 6-weeks of wearing the same earings will be over.Out with the old and in with the new!!!
Austin is having a great time in school doing Kindergarten stuff. The kids have great teachers. Austin loves playing basketball in the gym at the RMHouse with the boys.
Please go to the bottom of the page and check out AJ's smile quilt. Just click and look. The music is the Batman theme. Perfect....!Thank you to the Smile Quilters for doing this for Addison.
God bless you all. Don't let the day pass without giving your kids a hug and a kiss... and tell them you love them.
Love to all,
Deb and family.xxxooo
Tuesday, April 8, 2003 9:54 PM CDT
I will try this one more time. The computer erased everything I wrote the first time.
Thankyou all for continuing to support us through our journey. We encourage you to write a message when you visit the webpage.
A.J.'s kidney test returned to us at 51. This is NOT good. So he was admitted to the hospital where he was started on IV fluids. We hoped that A.J. s test is not correct due to dyhydration on the day of the testing procedure.
The C.A.T. scans also did not bring the news we were hoping for. There was again NO change. We aren't sure why the tumors aren't shrinking.
The doctors are hopeful that the tumor is dead and that is why there has been no change for so long.
They will be doing a P.E.T. scan this week to help determine if the liver tumor is alive or dead. The scans also showed two (2) spots on A.J.'s lungs. This didn't make us happy...
The A.F.P. test results also came back. The test suggested that there is cancer growing somewhere in A.J.'s body. Last month, Addison's test number was 82,000; this month it is at 96,000. A normal level is UNDER 10!!!
We can only ask for everyone to PLEASE pray for Addison and for his doctors so they will find the right path to help A.J..
We have total faith that God will do what is best.
On to happy news:::::
ADDISON WILL BE 4-years old tomorrow. April 9th. It is his "real" birth date. HOORAY!!!!! What a blessing he has been to us. We love him so much. Of course, we love Ashley and Austin TOO! They are so great!
We are blessed with some really terrific kids. Thankyou GOD....
Thankyou for checking in and PLEASE sign A.J.'s. God bless all of you.
Deb and family.
P.S.
All the kids are staying at the hospital tonight with Addison... so he can see them first thing in the morning for a big birthday hug and kiss! They love their brother. He adores them!
Wednesday, April 2, 2003 4:22 PM CST
Today we write with much saddness for our dear friend Nathan. First, I would like to thank everyone for praying for this wonderful family. They will need our help in getting through the next chapter of their life. Nathan was 16 years old. He now has no pain and was taken to his new home with God. Please check in with them and leave a note if you would like. www.caringbridge.org/tx/nathan.
Addison is feeling great. We still need some platlets. We will be starting tomorrow at 7:30a.m. with a kidney test that will last until 12:00. In between, we have a CAT scan, blood work, and an AFP which is a very important test for us. This tells us if the cancer is growing out of control or not. Addison will finish the day off with Speech therapy with his teacher Andrea. He loves Andrea and speech. The only bad news is we have to wait until Monday for all the test results.
Addison's buddy is still in the hospital and could use some prayers. I hate to ask but I know I can count on all the wonderful people who have supported us through all to add a name or so to their prayers tonight. Thank you.
Lucas- www.caringbridge.com/mn/lucaskells
Mitch- miracleformitch.com Mitchell has but a few days left and is in really bad pain.
Ali--she is doing better but still needs our prayers.
God bless you all and thank you for all your support. Don't forget to pray for Addison. Sign in and say hello.
Ashley and Austin are on spring break and are doing good.
Deb and family
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P.S. If you have time please go down and click on Addison's smile quilt. This was made with much love by smilequilt family. Thank you again.
Friday, March 28, 2003 2:15 PM CST
Addison is doing great. His blood counts are starting to improve. We have spent 2 weeks in our room at the Ronald McDonald House and only leaving for clinic appointments and blood transfusions. We have had many.
Addison is so wise; we spent one day at the hospital getting platelets and as they flowed into his body he replied, "Oh goody, I get to run today." It is very hard to keep a 3 year old from playing. That's all they want to do. Unfortunately he still was unable to run. His body would not hold on to the platelets.
Ashley and Austin are doing good in school. Ashley got her ears pierced and she did a great job with the sudden and surprising pain related to the proceedure. Austin will be starting t-ball soon.They began their "Spring Break" from the Minneapolis Public Schools on March 28, 2003
I would like to thank all the people who so generously gave to the "hamburger and fries". Skipping one meal at the local hamburger joint and sending the money you would of spent to one of Addison's accounts... helps our family tremendously!
I recieved an email with a wonderful story I would like to share:
RUNNING THROUGH THE RAIN
She had been shopping with her Mom in Wal-Mart. She must have been 6 years old, this beautiful red haired, freckle faced image of innocence.
It was pouring outside. The kind of rain that gushes over the top of rain gutters, so much in a hurry to hit the earth it has no time to flow down the spout. We all stood there under the awning, inside the door. We waited, some patiently, others irritated because nature messed up their hurried day.
I am always mesmerized by rainfall. I got lost in the sound and sight of the heavens washing away the dirt and dust of the world. Memories welcome reprieve from the worries of my day.
Her voice was so sweet as it broke the hypnotic trance we were all caught in "Mom, let's run throught the rain," she said.
"What?" Mom asked.
"Let's run through the rain!" she repeated.
"No, honey. We'll wait until it slows down a bit." Mom replied.
This young child waited about another minute and repeated: "Mom, let's run through the rain."
"We'll get soaked if we do," Mom said.
"No we won't, mom. That's not what you said this morning," the girl said.
"This morning? When did I say we could run through the rain and not get wet?"
"Don't you remember? When you were talking to daddy about his cancer, you said, 'If God can get us through this, he can get us through anything!"
The entire crowd stopped dead silent. I swear you couldn't hear anything but the rain. We all stood silently. No one came or left the next few minutes.
Mom paused and thought for a moment about what she would say.
Now some would laugh if off and scold her for being silly.
Some might even ignore what was said. But this was a moment of affirmation in a young child's life. A time when innocent trust be nurtured so it will bloom into faith.
"Honey, you are absolutely right. Let's run through the rain. If GOD let's us get wet, well maybe we just needed washing." Mom said.
Then off they ran. We all stood watching, smiling and laughing as they darted past the cars and yes, through the puddles.
They got soaked.
But they were followed by a few who screamed and laughed like children all the way to their cars.
And yes, I did. I ran. I got wet. I needed washing.
Circumstances or people can take away your material possessions, they can take away your money, and they can take away your health. But no one can ever take away your precious memories.....So, don't forget to make time and take the opportunities to make memories everyday.
I hope you enjoyed it.
God bless you all. In closing, I wish while you pray tonight, that you add a few of our friends to your list:
Ali-she is in intensive care...she is one of the most spunky little ladies. She needs some prayers.
Nathan-lives in texas and is in intensive care he has cmv pnemonia and yeast infection in his lungs. www.caringbridge.com/tx/nathan.
Sam-he has had a long journey and needs some extra prayers he has nerve pain, gvh.etc...www.caringbridge.com/ia/sam.
Jake he is from SD he has been here close to two years and is back in the hospital. Jake's story is the miracle of all miracles.
Mitch-His pain has been very ####### for he and parents! Please help them get the strength they need. miraclesformitch.com is his website.
There are so many children at the Ronald McDonald House that need your prayers. These need a little EXTRA right now.
The power of prayer. WOW! What it can do!
We love you all for caring for us and please keep AJ in your prayerS. Thank you all for being here with us through this most difficult journey.
Take a day off work and spend quality time with your children, wife, husband, family. The memories are priceless.....
Thank you for signing in.
Deb and family.
Thursday, March 20, 2003 12:56 AM CST
...What a Long Strange Trip It's been... it is near impossible to get that verse from the Grateful Dead tune out of my head when meditating on the year we have spent at the hospital, Ronald McDonald House, and the Minneapolis/St. Paul area. For all of it's stress, sad, and frightening moments... our time here is best described as "strange"!
Our little boy A.J. has adjusted to his new life. He has endured a tremendously agonizing year. However, he continues to behave much like most 3-4 year olds. His bravery and positive attitude regarding his life have, in many ways, sustained our entire family.
Little Addison is a chaismatic person. His "look", behaviors, and his socialization skills are amazing. He pulls the chemotherapy pump about the hospital visiting patients, he sits with the nursing staff for hours conversing, and creates a special feeling for the people he touches. He is known to everyone at the Ronald McDonald House... where he is simply known as "Batman"... his favorite comic strip/movie super hero.
What I write of... friends and family... are understatements of how truly "gifted" A.J. is. One may think this is simply a father's pride showing through... however... as his father I believe in speaking of he (and his siblings) in a humble and objective way. We scandanavians are not braggerts...
A.J. has a gift and message to share here on Earth... he is playing out pieces of GOD's will for him each and every day. We hope and pray that GOD allows him to continue his work of touching other's lives "for a good long time".
We were quite shocked by our friend's entry into the website. His fundraising idea "Hamburger and Fries" for A.J. was quite unique. The idea of helping others by donating what it would cost you for a burger and fries is great. The "little investments" in these kid's lives (and their families)are what makes the difference. A HUGE DIFFERENCE!
This site, however, is not a vehicle to raise money for our "little guy". It is a sight to keep you in tune with his life, his familY's life, and his day-to-day progress. We know that as time proceeds that our financial condition will worsen. We have seen serveral families lose their houses, cars, and the entire life they left behind... before their children got sick. We, like them, do not fear the financial hardships. We focus on whatever it takes to save our "baby's life". It is that simple. Hell, take the house, have the car, strip us of our clothes... but please save A.J's life!!!
We are forging ahead. For those who have shared with us your hope, love, kindness and generosity... you are special people who seem to have a deeper understanding of this journey we are on. You know that, at times, pats on the back, special words, etc. are simply not enough. We can not describe the humility, love, and gratitude we have for you.
Of course, we have learned (also) the power of: prayer, positive thinking, and of attempting to adhere to GOD's will for us. We never stop believing in a positive outcome in this journey. We ask... only for a successful day... today! You have heard all of my philosophical "mumbo-jumbo" before!
We are very near the officiality of spring. We are, again, walking A.J. to his many clinic appointments and the children are having a complete blast at recess at their new school. They have also been on a "few" nature walks... awesome stuff!
For those of you attending the Minnesota Timberwolves Spring Gala (this weekend ) and are expecting to hear our family speak, we are sorry but we won't be speaking at this event. We felt it important to have you exposed to the very special stories of other residents of the house.
The Nash family from Kentucky will speak. They are a tremendous family with a story of love. hope, anguish, and miracles. They are a blessed group of people... with a very special little girl named Presley.
So... the addresses for your contribution to the "Hamburgers and Fries for A.J." are as follows:
Mr. Steven Anderson
Director- The Addison Jasper Toivola Irrevocable Trust Fund
608 Ontario Street
Minneapolis. MN 55414
Ms. Becky Maki
Contact person: A.J. Toivola's Eveleth-Gilbert Fund
The United In Christ Lutheran Church
Eveleth, MN 55734
We hope you forgive the attempts at fundraising. We literally had no intention of involving ourselves in such matters. We will support the Hamburgers and Fries For A.J. campaign and but will mostly involve ourselves in fundraing efforts for the Ronald McDonald House in it's entirity.
May God Bless You and Yours... May God bless America!
DBT
Tuesday, March 18, 2003 4:51 PM CST
Dear visitors to Addison Jasper Toivola's Home Page. The Toivola's gave me access to Addison's page thinking that I would use my experience with childhood cancer as a motivational/hopeful way to visit all of you.
The Toivola's are humble people who have been through an ordeal most people have no conception of. A.J's cancer coupled with Dave's health problems have made for a very intense time.
What is interesting is the amount of hope they live by and their eagerness to help others. Most parents in this situation have their hands/hearts tied up with their own personal struggles; let alone helping other people. The Toivola's, Deb and Dave, have helped countless people. They are fond of saying "in helping others we are helping ourselves". They seek no recognition.
Most families in the Toivola's situation, A.J's situation, have a fund raising arm that continually provides the much needed financial assistance needed to keep the family on track. (Dave and Deb are going to be very angry with this update and have nothing to do with what I am about to write)
Last spring the communities of Eveleth, Gilbert, and Hibbing came together and raised money for A.J. Two of Dave's high school classmates (T.Bizal and J. Schwartz) organized these events and these "Range" communities pulled together (along with all the surrounding communities)to create two memorable (and pure loving)events.
This, of course, is amazing, awesome, and love driven. However, on April 9, 2003 A.J. will begin year two of his miraculous journey towards a complete recovery. Should A.J. survive and receive a liver transplant the Toivola's will be in the Twin Cities for another entire year or more. The fact is, that the Toivola family will need YOUR HELP in order to continue to keep their family together and their life in Gilbert, MN on hold. Yes, they continue to own a home and have a life in Gilbert, MN.
I do not know the specifics of the Toivola's financial health. They do not talk about stuff like that with all the other problems people are faced with. I simply know that helping to reduce financial stress from "cancer families" lives allows them some freedom to deal with the problems at hand. Helping their child LIVE!
Through some research, I found that the Toivola's rarely take direct donations on behalf of A.J. and their family. They have two accounts that are set up in a legal fashion to do that job. I was surprised to learn that they are not aware of the amount of money in these accounts. They only know how much they help. They only speak of humility and gratitude when the topic is brought up. They leave the accounting to people who have been given the legal power to do so. Your money is in the best of hands.
Some 14,000 people have visited A.J.'s webpage. Can you imagine if, for every visit, a person donated fifty cents, a dollar, five dollars or whatever they could afford? You see it does not take much!
These folks are of extraordinary character. They live one-day-at-a-time, give of themselves to others, raise their family, and take care of the one and only A.J. (Batman) Remember: They are no asking for help. I am asking for help on behalf of them. So skip one trip to the fast food restaurant and send that money to one of A.J's accounts. You will be serving a family who really only wants your kind words and prayers. You will receive a whole lot more than what you give!
Send your "Hamburger and Fries Donation" to: the A.J. Eveleth-Gilbert Fund c/o Ms. Becky Maki United In Christ Lutheran Church Evelth, MN55734
or The A.J. Toivola Irrevocable Trust Fund c/o Mr. Steven Anderson 608 Ontario Street Minneapolis, MN 55414
May you all find it in your hearts to give to Addison Jasper Toivola and his family. You will be helping a family who would certainly be helping you if the shoe was on the other foot.
Monday, March 17, 2003 9:14 PM CST
Greetings.....We had a wonderful weekend. Great weather and great friends. The Maki's came by Saturday and we had a great day with them. Thanks again. Sunday Ashley and Austin went to the Timberwolves game with the house 2 adults shaparoned the kids. Addison spent the day with mom and dad.
Today, Monday was spent going to clinic for blood counts. We were sent directly to jail. The day hospital welcomed us with open arms. As always the nurses are kind and caring they make for a pleasant day. We also had a great surprise, Pastor Eric, Mindy, Frey, Lucas and Sophia stopped by to visit. It was wonderful to see you all again.
We finally arrived home just in time for supper 5:30p.m..
We would like to also ask if you have time tonight to say an extra prayer for our dear friend Presley she had surgery today and a gtube put in tonight. She is a very special little girl and we love her so much. Thank you. There are many children here at the Ronald McDonald house and Hospital who need prayer.
We would like to say thank you for all your support, love and prayers. We will keep you posted on anything new.
xxxxoooo God bless us all.
Deb and family.
Wednesday, March 12, 2003 8:47 PM CST
We are home from the hospital. Addison is in the best mood. He is FREE>>>>>No poles...He loves to be free. He went through his chemo so well. He got to play with his best buddy Lucas (www.caringbridge.com/mn/lucaskells) Go to this page and see the great pictures of addison with his buddy. Lucas is a special little boy you can also read about lucas and pray for him.
We will have cat scans,kidney test,echocardigram,and the important AFP test on April 3,03. This will tell us if the tumor has shrunk, we are praying for a large shrinking of the tumor. The AFP test is a blood test that tells them if the cancer is growing or not. A normal afp level is under 10. When we got to minneapolis last april it was 2,600,000. This is not good. In January 03 it was 33,000. We need to get to 10 or lower. Will update later.
Thank you for all your support we wouldn't be able to continue our journey without all of you..xxxoooxxxooo to all.
Deb and family
Friday, March 7, 2003 11:07 PM CST
Just a short update.
Thursday Addison's counts were good enough to start chemo.
So we are in the Fairview University Childrens Hospital. We arrived at noon and Addison ran to the playroom for fun. He started chemo at 9:30p.m. So he was free from tubes and poles most of the day.
He is doing so well with his potty training. Mom had to bring his potty from home so we had a extra bag to carry. Thanks papa for carrying all our bags. Besides that we have a bag of batman toys and of course everything else we can see.
Grandpa Bruce and Grandma Merryellen are visiting for the weekend so we had to draw and color pictures. More coloring on the bed then paper.
Ashley and Austin are doing great and loving school. They also love to draw. Austin loves to chat with grandma and talk sports with Grandpa.
This is not a broken record but feel we have to express to you our thanks for checking in and signing the questbook. It gives us such a wonderful feeling to read from you all.
We do get strength from everyone who signs in and for that we thank you. So if you have the time please sign in even to just say hi. God bless everyone.
Deb and family
Monday, March 3, 2003 9:39 PM CST
Sorry it has taken so long to update. Addison has just been stuck up in the room due to low counts. He is feeling great. He has lots of energy but when bumped he gets huge bruises. With low platlets this is normal. He is doing a great job potty training. We are so proud of him.
Ashley and Austin started at public school on Friday, last week, they seem to be happy. We thought it was in their best interest to move them to a class of there peers. Ashley is in 2nd grade and has made friends and brings home lots of school work. She had her first sleep over with a friend named Meredith. She had a great time. Thank you Lisa and Meredith. Austin has a friend from Japan and today he said he meet a boy from Egypt. We have a wonderful family at the house from Eygpt. So joking with him I asked did you ask the boy if he knows Rowan (our friend from Egypt)? He said,"Oh, I forgot to ask him." We all know this is good for a laugh.
Today was spent running to the hospital for a kidney test for AJ. This is done every month before chemo is started. The bad part is that it is at 7:30a.m. and lasts until noon. They draw blood every 40 minutes. We will have the results within a day or two. The plan is to do more chemo this week (if aj's counts recover)then more scans in two weeks. The hope is still for a good amount of shrinkage for the transplant team to talk to us and get the ball rolling there.
Addison still has great amounts of humor. The weekend went with mom in bed with a terrible sinus pain. AJ says, "mama are you really sick?" Mom said, "Yes mommy is sick." Without blinking an eye my precious little boy says, "Mommy I'll hook you up to some chemo and you'll feel better soon." Today I was feeling much better and he replied, "see the chemo made you better." WOW.......
Remember to spend alittle extra time with your children and family they are the best things in life. Nothing can ever take the place of family. Thank you all for your continued support. PLEASE sign in the questbook we so much love to hear from everyone. We get great amount of strength and courage from your words and prayers.
God bless AMERICA
Deb
PS-
Many people have asked about Dave and his prospects of resuming his career... here in the "Twin Cities".
Dave, for those who are unaware, has had a strange and surreal last number of years. Prior to A.J's illness he battled a type of depression that did not respond to any medication therapy (Treatment Resistant Depression).
Last winter, while hospitalized, Dave underwent very aggressive therapy to help his brain's chemistry respond to medication therapy. This therapy continued throughout the summer with experts at the University of Minnesota.
The therapy has finally began to show results. Dave's depression has improved. However, the treatments and/or his weird depression have effected his short and long term memory.
He is working with a world renowned neuropsychologist whose specialty is the brain and memory issues. In short, the damage done to Dave's brain is very, very similiar to the damage done by a small/moderate stroke.
Until this problem is corrected Dave cannot seek employment. He is working with the best people in the field so we are confident he will recover fully.
enough said. Back to A.J.
Friday, February 21, 2003 6:10 PM CST
Friday February 21, 2002
A.J. Toivola's Long Strange Trip Web Page Update
Welcome friends, family, and all those special people who support A.J. and our family through this website. A.J. has enjoyed a most terrific week. Despite falling white blood counts and the threat of blood transfusions, A.J. has played, "bummed" around the Cities with his Mom and Grandma Marilyn, raised havoc all over the Ronald McDonald House... and took his first "number 1" on the toilet. "Just like a big boy!" The celebration was bigger than most families Independence Day Holidays! Also, A.J. has been telling EVERYONE he meets of his this huge feat. It is hysterical... absolutely hysterical!
Many people ask us when we will be returning home to our beloved Gilbert, MN. The answer, as it always has been, is unknown. We are sure we will be here(GOD willing) through the summer. Most probably well into next year... or longer. We, of course, play it one day at a time. We are so happy to have healthy and robust days with our son and brother. We know that nothing is guarenteed. We are firm in our conviction of making it through this as an intact family. Certainly... we will never, ever be the same. Today, however, none of our future meanderings mean ANYTHING!
As many of you know, A.J. will have another C.A.T. Scan in a week or two. This scan will help all of us determine if the tumor has shrunk... and shrunk in th eright ways. We are relatively certain that the "REMARKABLE A.J's" survival will be based on a healthy and stable LIVER TRANSPLANT. This appears (at this time)to be the best path to follow. So, you can see how irrelevent the future is to us. Today's health comes first. We PRAY for a string of daily victories.
A.J. has enjoyed the distration of many familial visits as of late. His "Uncle Eddy" was here last weekend and Debbies Mom has been with us this entire week. MerryEllen and Bruce (Dave's parents)will join us next weekend. These visits seem to revive us all. A.J., Ashley, and Austin love the attention that only an uncle or Grand Parent can provide.
We look forward to the "Ides of March" and the ensuing spring months. We have been taking Ashley and Austin on regular nature walks along the Missisippi River and have seen many "cool" and "groovey" things. There is no substitution for having children out of doors and free to play. None. All of this controlled sporting and other activities may do more harm than good. Children need to play without a sense of pressure. Sorry...
So... we look... as a family... to the stars and the moon and continue to thank God and his almighty son for what we have... today!
We will never be the same, in part, because of the support all of you have provided us. For those who truly care about A.J. and his family... we could not do this without YOU!!!
As in past journal entries, we ask that you consider monetary contributions to one of A.J.'s secured funds.
You may send your contributions to:
The Addison Jasper Toivola Irrevocable Trust Fund
Care of: Mr. Steven Anderson (Andar)
678 Kenneth Street
St. Paul, MN 55116
OR
The Addison Toivola Eveleth-Gilbert Fund
Care of: Ms. Becky Maki
United in Christ Lutheran Church
Eveleth (Hockey Town) MN 55734
***** PLEASE BE REMINDED THAT THE TOIVOLA FAMILY DOES NOT HAVE DIRECT ACCESS TO THESE ACCOUNTS. THE ACCOUNTS ARE MONITORED BY STRICT ACCOUNTABILITY MEASURES AND FOLLOW MINNESOTA STATUTE AND LAWS***
We ain't goin' to Jamaica on your contribution!
GOD BLESS AMERICA,
T.
PS- sorry to have expressed any/all personal opinions. this space is dedicated to "the one and only" AJ... Toivola!!! and his journey... DBT
Saturday, February 15, 2003 11:19 PM CST
Hi everyone. Addison is doing so good that we will be going back to the ronald mcdonald house tomorrow. He is in very good spirits. He has been enjoying sitting with the doctors (really the nurses but he calls them the doctors) at the station (nurses station) and telling me (mom) you can go to the room. So as any good mom would do I go to the room and wait for Addison.
He had a wonderful valentines day passing out his valentine cards, batman of course, to everyone on the floor. The Gopher basketball team was visiting and brought in cookies and frosting and sprinkles etc...so we decorated cookies and ate them.
Addison went through hearing test, they showed he had lost his high frequency hearing due to chemo. The cat scan of the brain showed no cancer in the brain, this is good good news. Aj also had a cat scan of the blood vessels etc... around the liver to see if they had improved at all. They also showed they had in some ways loosened there grip but also the tumor grew in away to press other veins so I still don't know exactly the answer there. The ultra sound of the heart was good.
We will have all the scans done in about 2 weeks again to see the results of this new chemo they are using now. Please pray for a good outcome.
Your prayers have done miracles and we are so thankful that you continue to pray for our son. Thank you and keep up the good work it is working (the biggest miracle is yet to come.) And after that we will all celebrate. Addison best buddy in the hospital is Lucas. He is having severe stomach pains so please say a prayer for him.
Addison is enjoying a visit from Grandma and Uncle Eddie and cousin Dylan.
God bless everyone.
Deb,
P>S> Ashley and Austin are doing great. We took them to the science museum today, they had a great time.
Wednesday, February 12, 2003 1:13 PM CST
Hello and welcome to the journal of A.J. Toivola's "long strange trip"!
The format of his page will NOW include information packed updates from "Ma" Toivola. This will insure you get the latest data in a correct and time conscious way.
Today's update comes directly from A.J's hospital room. This room, number 38, has been visited on several times by A.J. and his family. It has been labled as a family "favorite". Now, when a family begins to know the hospital rooms and can determine which one they like best, one begins to wonder about mental health, insanity, and sanatariums... (keep in mind every hospital room is the same in appearance... the environments subtle differences must be where "the light is"...).
A.J's demeanor is excellent. He has had an entire dose of chemtherapy pumped in to him... yet... he has eaten a bowl of cereal and an entire ham sandwich in the last couple hours. COOL...eh?
Since arriving here yesterday he has endured hearing tests (results within the normal range... the ability to detect high frequency sounds has been damaged but this SHOULD not promote future problems), a CAT Scan of his brain, and began chemotherapy. He has done all, as usual, with a smile and a laugh! Shake it sugaree!!!
Man, I'll tell you, one of the things we have learned over the months is... to be kind to everyone we meet...
everyone... and I mean everyone... has difficulties in their life... so kindness helps... even if just a little...
DT
PS-
Please remember that your contributions will help AJ and his family. They are approaching their "second season ON THE BRINK"! Your help will directly improve the lives of a little boy and his family.
THE A.J. TOIVOLA IRREVOCABLE TRUST FUND
C/O MR. STEVEN ANDERSON
678 KENNETH STREET
ST.PAUL, MN
55116
OR
THE A.J. TOIVOLA FUND
C/O PASTOR ERIC LEMONHOLM
UNITED IN CHRIST LUTHERN CHURCH
EVELETH, MN
55734
**** PLEASE NOTE: ALL THE TOIVOLA'S EXPENDITURES/EXPENSES MUST BE APPROVED BY THE RESPECTIVE FUND'S REPRESENTATIVES AND/OR FUND'S COMMITTEE.****
YOUR CONTRIBUTION WILL BE SPENT IN A MEANINGFUL WAY!!!
Monday, February 10, 2003 0:38 AM CST
Sorry for the delay in updates, days fly by and before you know it its been a week. It has been a busy week, Tuesday the doctors called and told us to bring Aj in to have surgery, they could fit him in. So off to the hospital we went. Addison had his teeth (some repaired some pulled)if you recall his teeth are rotting due to the medicines and chemo. The good news is they only took out 4 teeth. The front top to be exact. This will cause somewhat of a speech problem, which of course we have been dealing with for some time, we hope it is minimal of a speech problem. The rest of the teeth were cleaned, repaired and put on a enamel and then caps on the rest, this will hopefully safe the remaining teeth until they are ready to come out themselves.
Addison is feeling really great in super spirits and acting like any 3 year old would. He was sore for about 2 days. We are very excited he only lost 4 teeth.
Monday we begin the gfr test, this is a kidney test to see the function,it was at 70% last month. Hoping it is the same or better. Tuesday we are beginning a new chemo and will let you know what that will be. It will run for 5 days but for only 4 hours a day, the doctor said it is really bad and he will PROBABLY be sicker than he ever has in the past. We are hoping for a small miracle, that his little body will handle this chemotherapy okay and not get to sick, so please say an extra prayer if you could for addison and his next week or two. We will update soon.
God bless us all and thank you for all your prayers and support. Please sign in the guestbook it gives us much needed strength and hope.
Ashley and Austin are doing very well and had a fun weekend playing with friends. They are both in basketball and won there game.
Friday, January 31, 2003 at 06:48 PM (CST)
Yes! There is some good news to report on in this edition of A.J's Journey Homepage.
A.J. had a C.A.T. Scan performed on Friday January, 24, 2003. We received the results on Friday, January 31, 2003. A.J's tumor on his liver has shrunk... not alot... but it has shrunk! Also, the two (2) tumors in his left lung have shrunk considerably. This is incredible news considering the last two or three C.A.T. Scans have shown no improvement or worse... (as an aside... and as a piece of trivia... one C.A.T. Scan costs in excess of $5,000.00... thank GOD for insurance!!!)
So... we celebrate the "small victories" and enjoy what we can and remember we are only on a one-day reprieve... tomorrow everything may change!!!
Two (2) weeks ago I (Dave Toivola) was in a small town in the very southwestern part of South Dakota. I was just south of the "Badlands" and was in the land of cowboys and famous Native Americans such as Red Cloud and Crazy Horse.
The name of the town I visited is Martin, South Dakota. It is ranching and hunting country. However, what set this town aside for me were it's people!
My purpose in Martin was to attend the funeral of a beloved Ronald McDonald Resident... and to spend time with her family who we, the Toivola's, had come to love and respect dearly.
Martin and it's people reflect all that is good of America! They are kind, honest, hard-working, caring, and loving people... their loyalty to one another is simply amazing!
It is easy, in Martin, to drift back in time when all of those charactaristics were more important than "the clothes on your back"... The people of Martin and the family of our beloved "Alisha" have changed all of A.J's family. They set a standard that all of us are attempting to attain... South Dakota... folks... is far more than Mount Rushmore and Wall Drug... it's greatest monuments are it's people... the living and breathing ones... not the one's carved in stone!
A.J's diet has been very good. He continues to eat "loads" of weiners, Captain Crunch, and Ham Sandwiches. He is able to put together puzzles like most adults and will spend a great deal of time "figuring them out"! This behavior of course is not typical behavior for a three (3) year old.
On Monday January, 27, 2003, A.J. had the absess on his front tooth "drained"! While he did not have any teeth pulled, the experience was horrifying... for both A.J. and his Dad! The "shooting" of the Novacaine was near intollerable! The "little-guys" screams were like those heard in a Steven King novel. I nearly fainted. Due to the "white" complexion of my skin the nurse had to find me a chair to sit in. To make a long story short, A.J's tooth was asperated and "hating trips to the dentist's office" was forever in-grained!
On the home front... Austin, our six year old (kindergarten)is reading and doing well in school. He will complete first grade reading and math sometime in March. Ashley, who is eight, is also excelling at school and will be doing grade 3 work before the end of the year. She is currently in grade 2. Sadly, A.J'S siblings "get lost in the shuffle" despite our families best efforts. We are lucky that the Ronald McDonald House has a "communal living" atmosphere to it. Most of the adults watch after all of the children. It is truly a special arrangement.
As many of you are aware, Austin "fell" and was "jabbed" in the eye with the sharp end of a pencil. His cornea was scratched and he had a tough week of inactivity but has regained "all" and is back in the "swing of things" playing at 100%!
The one-day-at-a-time philosophy reigns true as always for Deb and Dave. Their days seem filled with appointments, meetings, grocery shopping, clothes washing, apartment cleaning, and hospital visits. While under a great deal of stress, they seem able to keep their attitude "on track". The normal marriage roles and routines ahve changed dramatically.
Team work is essential... as well as hard work... and complete devotion to family responsibilities is foremost on their DAILY agenda. Needless to say, Dave is not playing much of any hockey this winter and Deb is not enjoying the peaceful retreat of a normal home and all of her beloved friends from "Up North"! Of course, being the MOM, Deb carries much of the day-to-day burdens of the family. She is truly a Saint...
The Toivola's journey is approaching the 10-month mark and they are pretty much in the same place as they were when first arriving in April of 2002. While A.J.'s time has included nine rounds of chemo-therapy, two-lung surgeries, a major surgery on his liver, hickman replacements and biobsies and countless tests and blood transfusions... his next course of treatment appears to be another round of chemotherapy... which is where this journey all began. The Toivola's will know more on Monday February 3, 2003.
If you would like to HELP the Toivola family with their finacial burden you may send your contributions to:
The Addison Toivola Fund -
Care of: Pastor Eric Lemmonholm @ Our Savior's Lutheran Church Eveleth, MN 55734
****A.J. has two (2) funds that are closely monitored and the money is used to help A.J. and the Toivola's through out their journey. The family must have their expenditures approved by the two funds committees.
The other committee is known as "The Addison Jasper Toivola Irrevocable Trust Fund" This fund is directed by Mr. Steven Anderson. You may send your donations to:
The Addison Jasper Toivola Irrevocable Trust Fund
c/o Director Mr. Steven Anderson
678 Kenneth Street St. Paul, MN 55116
Please keep in mind that A.J. (and his family) will soon be entering their second year at the University of Minnesota Children's Hospital and The Ronald McDonald House. Any and/or all financial help will be well received and will be benefitting the Toivola's more than you will ever know...
May GODBLESS one and ALL,
T.
Sunday, January 26, 2003 at 03:00 PM (CST)
Hello and welcome to another installment of A.J.'s journey JOURNAL. Addison Jasper Toivola (Toy-vala)is a precious 3-year old boy who has battled with the rare liver cancer Hepatoblastoma since April of 2002.
His journey has been marked by numerous surgeries, episodes of intense chemotherapy, and many days of hospitalization.
Today, however, he plays ficticious football with his brother Austin (age 6)and sister Ashley(age 8)while awaiting the start of the American Holiday... the Super Bowl (sic).
-Hold fast to God's hand and he will lead you safely through all trials. Whenever you cannot stand, he will carry you lovingly in HIS arms. (St. Francis de Sales)
A.J. is with his family at their temporary home the Ronald McDonald House on the East Campus of the University of Minnesota or South Eastern Minneapolis, MN if you prefer. His immune system is not functioning properly due to his very low white blood count. He has undergone a number of blood transfusions to help him through this precarious time. This happens after each "round" of chemotherapy.
While A.J. and the Toivola's have not strayed far from their little apartment nor the University of Minnesota Hospitals (due to to the immune deficiencies)he still was able to contract a absessed front tooth. He had it checked at "the hospital" on Saturday morning (1-25-03) and will be rechecked on Monday (1-27-03). When his "blood counts" rise he will have the tooth removed (pulled!). Just another stop on the long marathon his life has become.
-We shall steer safely through every storm so long as our heart is right, our intentions fervent, our courage steadfast, and our trust fixed on GOD. (St. Francis de Sales)
A.J. underwent his latest C.A.T. SCAN on Friday January 24, 2003 at 4:30 PM. The family has not been informed of the results of this critical test to date. Waiting is often more difficult than knowing!
Many people complain of the lack of humility and large egos of physicians. One would imagine this to be the case at the University of Minnesota Children's Hospital. After all, some of the world's leading practioners work here. This, however, is not the case. The residents of the Ronald McDonald house generally agree that they are very surprised by the humble (yet highly confident/competent) demeanor of the "life saving" and cancer CURING physicians they deal with. This institution appears to be in the Major Leagues of Medicine... the "real big leagues"!
-"Nothing that I can do will change the structure of the universe. But maybe, by raising my voice I can help the greatest of all causes - goodwill among men and peace on earth." (Albert Einstein)
The Toivola's are asked several times a day when they are going home to Northern Minnesota. Sadly, the answer has not strayed from the one they gave their first day away from home. "We have no idea nor do we have any plans to return home at this time". Going home to Gilbert, MN rarely even enters their conversations. Sure, they miss their family, friends, and their community but they (also) are aware that A.J. is not even half way through this life-saving journey. With his illness, it is absolutely "LIFE AND DEATH"!!!
This, of course, is often too difficult for friends, family, and well-wishers to consume nor understand. After all, life and it's daily American tribulations are difficult enough to endure. The Toivola family would never want the true understanding of these people... especially if it meant that they would have to endure/survive what they all have gone through the past 10-months. Those who have, sadly, know exactly how the daily life of the Toivola family has been effected.
- "There is hope for tommorow, even when things look dim; There's hope for tommorow when you put trust in him. though darkness surrounds you, he's always there, with arms that will hold you, in his loving care. Just when you thought you had lost evrything, he's right there beside you with comfort to bring. Aand you'll know assurance, he'll never depart, for he's dwelling inside you, right there in your heart." (Connie J. Kirby)
During the summer of 2002 fundraising events were held on behalf of Addison and the Toivola family. These events were supported by one and all. The outpouring of support was literally overwhelming. The Toivola's would like to have the readers reminded of all who gave of their time to these events and especially to Hibbing, MN (home of Bob Dylan)natives Mr. Terry Bizal and Mr. Jason Schwartz. These two (2)heroic people could not sit by and watch a family go "down the tubes". They focused their attention on pulling their respective communities together for the good of a family in need! There response to Addison's illness will never be forgotten. "Every journey begins with a step". These two HEROIC figures are testament to this ancient Chinese Proverb.
Individual people can really make a difference in the lives of the critically ill and their families. The expenses are "damn near" insurmountable (despite what you may hear and/or imagine). The day-to-day cost of living in a foreign place, especially a metropolitan area, simply are staggering. Without the help of the communities of Eveleth, Gilbert, Hibbing, Minnesota, and the United States the Toivola's could not endure these times together... as a family... together as "one"... as they should be. Your support has created a series of MIRACLES for A.J. and his family.
As time goes on the critically ill and their families no longer find themselves as the topic of conversation at people's "dinner" tables. This is especially true when the ill person is ill for a very long time. For people (including the Toivola's)at the Ronald Mcdonald House many of the children and their families have endured multiple year relationships with "the house" and the U of M Children's Hospital. So when the temptation arises to ask or promise "is there anything I can do for you" or "if you need anything just call" remind yourself of what you really can do... to help... without even asking... it is beyond simple... if you TRULY WANT TO MAKE A DIFFERENCE!
- Faith can move mountains, no matter how steep. And calm rough waters, no matter how deep. Faith can change darkness to heavenly light, while leading us tranquily out of the night. All this I can grant... with assurance, you see, for countless are the mountains... faith has moved fro me. (Laura Baker Haynes)
Thank you all for your on-going support of the Toivola family. Please remember those who have made enormous sacrifices so Addison's journey easier. They all, you all, are heroes.
T.
Friday, January 17, 2003 at 12:05 PM (CST)
Hello! Welcome to the Journal Website Up-date of Addison Jasper Toivola. This is our way of keeping you in touch with us... and WE in touch with you. God knows how much you mean to the Toivola family. Your words of hope and encouragement have been "the glue" that has held us together and "on track"!
Ufta! Time flies as this journey proceeds. A.J. was allowed to return to the Ronald McDonald House on Sunday January 12, 2003. He wasd home for 35 minutes and was off to a "Lighting of the Tree of Hope" a children with cancer event in St. Cloud, MN. It was a very special event. We were extraordinarily honored to have had A.J. honored with a gold ribbon and his picture placed on the tree. The ribbon and pictutre were placed on the tree by a dear an d beloved friend from Red Wing (Kirsten...currently a resident at the Ronald McDonald House). A.J. had a splendid time as did Ashley and Austin. The event included clowns, face painting, cookies, juice, famous sled dog mushers (with no snow) and their dogs. The social aspect of the event was a key component... especially for the parents who all have children with cancer.
A.J. and his parents were at a very large Wal Mart in a Northern Twin City's suburb on Wednesday January 16, 2002. While the shopping was great and an excellent diversion... A.J's behavior was even "more AWESOME!!! For over two hours A.J. refused to sit in his stroller. He walked, ran, and played "silly" kids tricks on his Mom and Dad. His energy level did not peak there. Upon returning to the Ronald McDonald House, he searched out his sister Ashley and played with her until supper. After supper... he played Bingo and socialized until 9:00 PM. Man... a day like that is better than winning the Stanley Cup! CLOUD NINE!!!
So we were blessed with a day as normal as the ones most of you experience regularly. A.J.'s blood is checked on Monday's and Thursday's. He will undergo tests on Monday January 20, 2003 to determine whether he will need a blood transfusion. This will all take place before our family is off to the Metro Dome for a Martin Lutheran King Day Rally and Timber Wolvees basketball game. We all hope we will be able to make it.
We will find our about A.J.'s latest results from last weeks chemotherapy in approximately 2-3 weeks. He will undergo a C.A.T. scan at that time.
We all have come to rely on simple spiritual sayings that help lift us during these tough times. This is one of those "simple" little sayings:
God, Grant me the serenity to accept the things I can not change...
The courage to change the things I can...
and the wisdom to know the distance...
Remeber our HIGHER POWER leads us through the trials and tribulations of our lives... not around them!
Toivola
Thursday, January 09, 2003 at 02:41 PM (CST)
Hi Everybody... you have reached the A.J. Toivola's Caringbridge Journal Homepage... and, man, are we glad you could make it!
This week has turned out to be one of the most stressful, sad, and disappointing weeks we have encountered since arriving here in April of 2002. On Tuesday, we were informed that A.J.'s most recent C.A.T. Scan showed two (2) new micro-sized "spots" on his left lung. This news was preceeded by the Oncoogist/Pathologist report that the two (2) tumors removed recently from A.J.'s lung were cancerous. Aj has also had some teeth aches so they brought in the dentist and to our surprise he has decay in all his teeth from all the medicines and treatments. So as soon as his counts recover from the chemo and he can fight (his immune system) they will take out the teeth (all of them). This is the safest thing to do because if he were to get an infection in a tooth he could not fight it and it could be very dangerous for him.
Heck, I wish it would have stopped there. On Wednesday January 8, 2002 the Liver Transplant Team met with us and (bluntly) informed us that A.J. will not be considered for a Liver Transplant. With the new "spots" on his lungs and the way the tumor has encompassed the major vein near his liver, make the liver transplant impossible. The caveat is... if the chemotherapy proves successful in shrinking the tumor away from the vein and the lung "spots" disappear... they may decide to "revisit" A.J's case.
Literally, my first thought was: "Please God let me fight with armed forces in the Middle East(Iraq)as a trade for my son's life and his well-being..." I have never wished to go to war or be involved in endangering my life in the armed forces... while horribly dangerous/deadly it seems as if it would be a very comfortable "trade" for my son's life...
A.J. currently continues his chemotherapy and will complete this round on Sunday morning at 2:00 AM. Hopefully, by 11:00 AM the same day he will be able to return to the Ronald McDonald House.
His demeanor this hospital stay has been mostly on the depressive side. He is having pain in many parts of his "litte" body. He seems to be most happy when his "broder" and "sissy" are with him. We have decided to allow Ashley and Austin to stay at the hospital this evening (1-9-03)to attempt to uplift A.J.'s spirits.
There are many "what if" and "what about this" questions one thinks of after being told that one course of treatment (Liver Transplantation)has been denied your child. One can not help but be "returned" to the thoughts and feelings that A.J. and our entire family are in the "hands" of Jesus Christ/GOD. When we think about it like this we have renewed strength, courage, and hope.
We are committed to attempting everything that is medically and spiritually viable to save our "little guys" life. We intend to do it with our "chins-up" and ready to do battle everyday... 24 hours per day... if necessary! We know, without question, that A.J. will fight every step of the way. After all, he has performed like a super human-being every step of the way so far...
So many "things" in life that seemed so important in our lives are of little importance now. In many ways, the way we think and behave as a family now are far better than they have ever been. We certainly are not hung-up on the materialistic, political, and professional "dribble-drabble" that so many people are needlessly weighed down by. In short, we "don't sweat the small stuff"!
"Our baby's" priority continues to be play as much as possible and enjoy the company of his sister, brother, family, and friends. He continues to be so full of life that it becomes easy to forget that he is critically ill. H
He is a brave "little chap" and could easily be refered to as an American Hero. He has sacrificed almost everything, yet, continues to "push ahead" towards being a kind, generous, and loving human-being.
So... we continue to forge ahead. We ask that you continue to support A.J. and pray for his recovery. We know that this journey will last well beyond a year but are most concerned with making it through each day...attempting to carry out GOD's will and plan for us. You certainly are a part of this equation. A.J. needs YOU!
We would like to thank everyone who took the time to pray for a dear person Alisha. She passed away very peacefully and with all her loving family by her side. They were a kind, caring, loving and close family and know will always be a part of our family. Please say a prayer for them.
Monday, January 06, 2003 at 06:48 PM (CST)
Welcome to Addison Jasper Toivola's journal update home page. As always, we sincerly welcome you and pray for your continued support.
Many of our readers are quite surprised by our continued hope, positive attitude, and one-day-at-a-time attitude.
We must say, that given our circumstances and our beloved A.J's condition, "What is the alternative?" We live in an environment of hope and (literally)in the "house that love built" (The Ronald McDonald House's trade mark theme). All of the families here have learned to live with their child's critical illness and have rallied together to keep the focus on the good and positive... again... "what is the alternative"?
The Ronald McDonald House is a fabulous and, in many cases, a miraculous place. We are surrounded by people from all over the world who are experiencing what it is like to have a CRITICALLY ill child in their family. One loses touch with the "critically ill" part... until, of course, a child whom you have known as a vital, talking, laughing, running, and singing human-being dies... then, my friends, it all comes back..."ah yes... OUR child TOO is in a life and death fight... a literal fight to stay ALIVE"!
Sadly, many children have left this world "on angels wings" to be with our creator in heaven in the time we have been here. This has become the most difficult aspect of living at the Ronald McDonald House. The daily experience of realities of life; which includes death.
So, we have learned to love people of all backgrounds, races, and religions. We have found that people, under these circumstances and no matter where they are from, are very similiar. There is an unexplainable bond the grows under such conditions. This bond is particularly strong between the children who carry the terrible illnesses... we have come to believe that GOD has somehow touched the Ronald McDonald House and critically ill children and their families in general. Staunch atheists even find it difficult to sum up the "power" that I speak of.
A.J. has returned to the U of M Children's Hospital. He is on floor 5B and is in room 36. His telephone number is 612.273.0347. He will begin his seventh round of intensive chemotherapy sometime on the evening of January 6, 2003. His heart and kidneys continue to function at normal levels, the kidneys are at 70% alittle low,so the oncology team is attempting this round of chemotherapy with the hopes of saving enough healthy liver for A.J. to live with. These rounds of chemotherapy are very intense. We hope and pray that his cancer will "give in" so Addison will no longer be forced to suffer. While knowing that nothing happens in GOD's world by accident... it is very difficult to understand such suffering in young people...
Addison's hospital stay will be from 5-7 days. After which he undergo all of the post-chemotherapy tests that will help to determine the success (or not) of the most recent round of chemotherapy. We believe that if this chemotherapy is not as successful... as one and all want... we will begin (in earnest)discussing liver transplantation. Despite the miracles of modern medicine and being in the best place on Earth for a liver transplant... it is NOT what we would want to be discussing about our beautiful little baby boy... "It just ain't what you want to be talking about when talking about your own kid"...
Many of you who visit this web page are strong in faith and believe in the power of prayer. We ask that you include, in your prayers, a young man by the name of Mitch Chepokas and a young lady by the name of Alicia Osterbur. These are but two (2) of the wonderful children who are fighting their illness's with intensity,strength and dignity. They need a little extra help... so please include them in your thougts and prayers. You truly have a chance to make a difference!
Ashley and Austin have returned to school. They had a very good winter holiday but were very happy to return to school. They are enjoying their new school and are doing well academically. They continue to miss their "regular" school and the friends they truly care for. They have been keeping busy with floor hockey and basketball at our local parks and recreation department. They participate in most of the activities at the Ronald McDonald House and have met friends from all over America... and the world. This, however, would be traded for a "romp" on the playground at the Nelle Shean Elementary School in Gilbert, Minnesota any day!
Addison's journey appears to have just begun... he has been in Minneapolis fighting for his life for nine (9) months and HAS ONLY JUST BEGUN!!! Hopefully, for those who believe this experience to have some romantic appeal to it, you will begin to see that Addison is a very ill child who needs only our support, committment, and love.
No three (3) year old child should be exposed to the wonderful aspects of a city, state, and/or country solely based on the fact that they are terminally or critically ill. Addison and his family have had some wonderful experiences while living in the awesome confines of the Ronald McDonald House... but what a price they have paid for admission!
We are all fighting... on a daily basis... to help A.J. survive. We continue to believe that GOD will determine the right outcome for our child. We need you now more than ever... this can not be overstated... we NEED YOU! Thank you for all that you have done and may GOD bless one and all!
We have not lost our positive attitude nor our hope. We believe that our ever present "up" attitude has allowed A.J.'s supporters to think all is well and A.J. is getting better and closer to being cured each and every day. While this may be true, you must know that he "has only just begun to fight"! The journey may have only just "set sail"...
Thursday, January 02, 2003 at 08:06 AM (CST)
Happy New Year! Welcome to A.J. Toivola's journal journey jottings (update)... we are honored that you are taking the time to visit.
A.J.'s day began at 7:00 AM today. After ushering in the new year with some "fun" and a great sigh of relief... it was back to the U of M for more early morning/day long blood tests. We have completed the first phase of today's testing and have found a quiet "library-like" environment so the "little-man" can snooze and YOU can be updated! Our baby is fast asleep and looks like a little angel in his stroller. My it is hard to believe that he even has a cold...!
The remainder of 2003's first week will be a busy one for our "super-hero"... today multiple blood tests, January 3, 2003 he is scheduled for a blood transfusion, and on January 4, 2003 he will go through his "um-teenth" CAT SCAN. We will begin speaking of A.J's medical future (in earnest) as we are "propelled"/"launched" into next week.
On a much lighter note, A.J. (and family) was visited by his ace super-hero Batman on Saturday December, 28, 2002. Batmen strode into the Ronald McDonald House driving his new Bat-SUV and carrying great enthusiasm to share with our family and ALL he came in contact with. This visit, his second, "blew the minds" of one and all who encountered the tall, dark, and winged crime fighter! His 3-hour stay was enjoyed by many of the children at "the house" and proved that the "caped crusader" is alive and well in the hearts of today's children... and... yes... Batman drives a Ford! Nothing... and I mean nothing... stirs the hearts of the children like a visit from Gotham City's Number #1 crime fighter... It was simply AWESOME!
As we are "blasted" into a new year month and year of this journey, it is hard to believe that A.J. has been through multiple surgeries, hundreds of "procedures", and has spent enough time in the hospital to personally know the entire Oncology staff. This adventure all packed into a three-year old's realm of experience. It "numbs" one's brain to even think about yesterday or tommorow. We have learned to ask for strength just for today... JUST FOR TODAY!
One begins to believe that "a higher-power" is a sincere and plausible reality. How else are we able... is A.J. able to continue? As parents... we can buy him the world... but do not have the strength to "cure" him! The peace is in knowing that we are not walking alone... that we have support and guidance and that we are LOVED!
Kiss your "kids"/family members today. Acknowledge their special place on this Earth and remember each second... of each day... that NONE of what we have been granted is to be taken for granted! None of what you see and experience, my friends, is luck... NOTHING!
Thank you for taking this journey with us... when we know more... YOU will know more!
Happy New Year,
The Toivola Family
Friday, December 27, 2002 at 01:31 PM (CST)
Friends and family... welcome to Addison Jasper Toivola's Home Page. It has been a full seven (7) days since an update to his condition has been provided. For that, we are sorry.
Addison has now had the tumors/growths removed from both of his lungs. We have not heard the results from the second surgery. We will let you know as soon as we find out. We have been, and continue to be, very optimistic. In fact, as I write this update... the little "tough guy" has just snuck up on me and given me a punch to my side and "giggled" as I chased after him... of course slowly and carefully.
Christmas was very different this year. We were not able to spend time with our dear family and friends. However, the Ronald McDonald House provided us with a terrific celebration. It was most unbelievable and allowed all the families to socialize and get to know one another better. There is an eclectic group of people who live here at the "House"! We are very fortunate to have such a facility in Minnesota. Words simply do not do justice!
Time simply flies by while going through this kind of experience. We are so fortunate to have "blessings" from all over the country. We can not express to you our gratitude. We really feel blessed... seriously!!!
Our next "road to pave" will begin next week. The initial planning stages/discusions will begin regarding a liver transplant... whether A.J. will need one or not. Some of this is very hard to believe and accept. We move forward by the grace of GOD and the love of our family and friends. Your updates on the web page bring much joy and happiness to our lives... especially during this stressful experience!
There is something quite different in going through something like this. We receive many invitations to do many wonderful things. We find, however, that our schedule between the near daily hospital visits and Ashley and Austin's activities... we are "dizzied" by the schedule. There is nothing we can put into words that can express our feelings regarding this experience. We appreciate all of your e.mails/updates... we look forward to them... each and every day.
Please do not be angered by our inability to return ALL of your e.mails! We find it an impossible task. As this is being written, it is difficult not to feel blessed by all who have involved themselves in our lives. We would not be able to do this without the support you ALL have provided us... SERIOUSLY!!!
As we are updated, we will continue to update you. Please continue to keep us in your prayers. There is a mighty long road ahead.... and we NEED ALL OF YOU!
We hope your holiday season is blessed with much joy and your New Year is gifted with with joy, love, and happiness.
Your sharing in our lives is so very important to us. It helps to lift the burdens we experience and makes us feel fortunate to have friends and family who care. We love ALL who keep us in your prayers... we have been changed by this experience and feel blessed by all that YOU have done for our "little boy" and this entire family.
God Bless, Love, and sincere blessings to one and all. We need you!
Toivola's
Friday, December 27, 2002 at 01:31 PM (CST)
Friends and family... welcome to Addison Jasper Toivola's Home Page. It has been a full seven (7) days since an update to his condition has been provided. For that, we are sorry.
Addison has now had the tumors/growths removed from both of his lungs. We have not heard the results from the second surgery. We will let you know as soon as we find out. We have been, and continue to be, very optimistic. In fact, as I write this update... the little "tough guy" has just snuck up on me and given me a punch to my side and "giggled" as I chased after him... of course slowly and carefully.
Christmas was very different this year. We were not able to spend time with our dear family and friends. However, the Ronald McDonald House provided us with a terrific celebration. It was most unbelievable and allowed all the families to socialize and get to know one another better. There is an eclectic group of people who live here at the "House"! We are very fortunate to have such a facility in Minnesota. Words simply do not do justice!
Time simply flies by while going through this kind of experience. We are so fortunate to have "blessings" from all over the country. We can not express to you our gratitude. We really feel blessed... seriously!!!
Our next "road to pave" will begin next week. The initial planning stages/discusions will begin regarding a liver transplant... whether A.J. will need one or not. Some of this is very hard to believe and accept. We move forward by the grace of GOD and the love of our family and friends. Your updates on the web page bring much joy and happiness to our lives... especially during this stressful experience!
There is something quite different in going through something like this. We receive many invitations to do many wonderful things. We find, however, that our schedule between the near daily hospital visits and Ashley and Austin's activities... we are "dizzied" by the schedule. There is nothing we can put into words that can express our feelings regarding this experience. We appreciate all of your e.mails/updates... we look forward to them... each and every day.
Please do not be angered by our inability to return ALL of your e.mails! We find it an impossible task. As this is being written, it is difficult not to feel blessed by all who have involved themselves in our lives. We would not be able to do this without the support you ALL have provided us... SERIOUSLY!!!
As we are updated, we will continue to update you. Please continue to keep us in your prayers. There is a mighty long road ahead.... and we NEED ALL OF YOU!
We hope your holiday season is blessed with much joy and your New Year is gifted with with joy, love, and happiness.
Your sharing in our lives is so very important to us. It helps to lift the burdens we experience and makes us feel fortunate to have friends and family who care. We love ALL who keep us in your prayers... we have been changed by this experience and feel blessed by all that YOU have done for our "little boy" and this entire family.
God Bless, Love, and sincere blessings to one and all. We need you!
Toivola's
Thursday, December 19, 2002 at 12:59 PM (CST)
Welcome to A.J.'s Home Page.
This little 3-year old has endured an expedition tougher than Sir Edmund Hillary and Will Steger could even contemplate!
It appears, at this point, that A.J.'s surgery on his left lung went quite well. They only found two nodules and one appeared to be scaring from when the little guy had a severe lung infection as an infant.
Of course we will not know of the real outcome until the pathology reports come in. It is a wait that drives us beyond madness. I think they call it insanity!
Believe it or not, one day after surgery he was attempting to eat the breakfast of champions... a cheesburger and a little "snort" of apple juice.
The experts believe the next step in this "war" will be to put him through the hardcore chemotherapy that was successful in the beginning. The liver transplant will be the course of last resort.
My sincere apologies for the mess of an update I provided yesterday. I went from a two (2) year old's funeral straight to my son's surgery. I did not have it together... needless to say.
We think of all of you very often. The life we are currently leading does not allow for much "pomp and circumstance"... if we do have a healthy day we spend it together... the five (5) of us frolicing as if it were the last time we will ever do it again. So if you are angry or disappointed that we have not connected with you please read what I just wrote... hopefully it will be clear to you why we aren't on the phone/e.mail 24-hours a day.
WE LOVE YOU WITH ALL OUR HEARTS... AND WE ARE DOING THE BEST DAMN JOB WE CAN. DESPITE OUR POSITIVE ATTITUDE... WE ARE FIGHTING "LIKE MAD" TO SAVE OUR LITTLE BOYS LIFE.
Merry Christmas and a Happy New Year. Sometime during the festivities... remember CHRIST IS AMONG US... I see it every day.
WE LOVE YOU AND THANKYOU FOR CARING! A.J. may be at the Ronald McDonald House for Chistmas... that will help to heal..you betcha!
DT
Wednesday, December 18, 2002 at 02:55 PM (CST)
Welcome! A.J. had a very successful surgery. Only two (2) liasons were removered. The surgeon did not feel that they were cancerous.
Of course, there will be a biopsy to follow and all that "cancer stuff".
We have lost 3-children to cancer here at the Ronald McDonald House this week. All told there has been at least 20 children who did not survive their chronic illness. That is reality! The funerals are particularly hard because you can't avoid the thought that "yours may be next".
We are hoping to have addison here at the Ronald McDonald House for Chritmas.
For Addison, Yogi Bera's memorable comment continues to prevail..."It ain't over till it's over".
Friday, December 13, 2002 at 11:28 AM (CST)
It humbles and make us very happy when you visit A.J.'s Journey Page. You bring so much joy and excellent laughter and cheer.
A.J. has been here for a full eight months. He is a well liked little boy by children and adults alike. For this, we feel blessed.
ADDISON'S SURGERY WAS POSTPONED THIS MORNING DUE TO HIS BAD COLD AND CHRONIC COUGH. HE IS ON SCHEDULE FOR SURGERY FOR WEDNESDAY DEECMBER 18, 2002.
We have ALL learned to deal with postponment. It has been a miracle to have been granted the ability to live for today... with little thought of yesterday or tommorow.
"Wonder Boy" is amazing. While we were playing football (throwing passes), A.J. makes a full out "Dick Butkus" assault on Austin River. KEEP IN MIND THE BROKEN RIB, LARGE HEALING INCISION, AND THE LIVER CANCER... WE HAD AN IMMDEDIATE RULE CHANGE. By the way, the football field was a rock hard gym floor.
We thank ALL of YOU for your generosity during this Holy season. We will not be venturing far from the Ronald McDonald House. We have decided to participate in the extravagant celebration they are known for. This, also, allows us to be close to our apartment andthe U of M
Hospital.
Please do not be offended... there is way too much excessive STRESS NOW! Resentments have caused close families to quit speaking for years. God, Jesus,and our family never want you to be unhappy... especially when we need to find deep courage, hope, and strength in order to proceed in the fight to keep little A.J. ALIVE.
Today, A.J. is very happy and has been since he left the hospital after his fourth (4) surgey. We are proud of him and cherish each and every moment that GOD allows us to have him.
"It ain't over ... till it's over!
Yogi Berra
DT
Monday, December 09, 2002 at 09:36 AM (CST)
A.J's Journey Continues...he has returned to the hospital. This "leg" of the journey began at 3:30 AM on Sunday December 9, 2002. He spiked a dangerously high temperature and there was no other solution... back to his home away from home!
Saturday December 7, 2002 was a fine day for A.J. and his family. Deb had friends from the "Great North" (Gilbert,MN)come to "the big city" for a day of fun, shopping, eating, gossiping, etc. A.J. was able to play with his siblings and end the day with a fabulous Christmas parade called "The Holidazzle Parade" in downtown Minneapolis. It was sensational. Hot chocolate never tasted so good!
A.J. returned to the hotel with Deb and "the girls" and appeared to be enjoying the remainder of the evening immensely... only to end the evening with the excessively high fever and a return to the blessed confines of the U of M hospital. The hotel was less the a block away. Even in bad times there is good luck...
So... where do we go from here? Forward of course! Is there any other acceptable alternative?
As you may already know, A.J. will have surgery on Friday December 13, 2002. He will have the "nodules" in his left lung removed... hopefully successfully... so we can begin the next phase of his lifesaving journey.
While he is my son, (anyone who knows me knows I can remain objective in most matters) I am completely amazed and baffled by A.J's strength and will to live. He rebounds from serious surgery like most of us do the flu. He can smile even after a day of near death experiences. He simply wants to get back to normal so he can rejoin his sister and brother in fun and carefree living. That's all. That simple!
The doctors continue to remind us that we are blessed with a special little boy... and it is hard, very hard, to believe that and still... watch him suffer through this terrible and exhasperating disease. It is clear to us that HE has now become the teacher... and we the students.
This is a journey we pray YOU will never take. However, it provides lessons in courage that meeting grizzly face-to-face could not teach. He has taught us to keep going, to fight for a little more fun, and to love beyond our wildest dreams and abilities... and so it goes... May GOD keep you and love... and may HE grant you your Christmas wishes.
As my daughter Ashley questioned me about recently... she said... "There isn't anything more important than LOVE is there PAPA"? There isn't...
Monday, December 02, 2002 at 11:17 AM (CST)
Hello to one and all! Welcome to A.J. Toivola's "Journal Jottings" Web Page. This is the place where we attempt to keep you up-dated on the progress of one little "HERO" named A.J. Toivola.
The pathology report is in... envelope pleeeease... and the determination is...
One out of five of the tumors removed were found to be cancerous. the other four were noncancerous in nature! WOW! what fabulous news... it may be a small step but it is a step in the right direction. We feel blessed.
It was a very tough week for A.J., He suffered tremendous pain, unbearable constipation, and three rugged three (rather than the one that was promised)in the pediatric intensive care unit.
Believe it or not, A.J. was released from the hospital on Saturday November 30, 2002. He was released just in time to visit with his grandparents (Terry and Don)before they were to leave back to the "the north country".
To take things one step further, on Sunday December 1, 2002, A.J. walked many times and spent the day in the company of the other residents of the Ronald McDonald House. Keep in mind what A.J. has just been through... surgical cuts from under his right arm to his mid-back, broken ribs so the surgeon could get at his lung, etc. We are, literally, talking about a very remarkable little boy here... he has an enormous WILL to live, to play, to learn, to love, and to be with his peers...
So what does the future hold for Addison Jasper? While no one knows the specific answer to that one, the plan includes the following:
Chemotherapy begins today(Monday December 2, 2002). He will be on the Chemo for five days, off of it for two days, and on it again for five days. He will be in the hospital for the entire procedure.
Presumably, on December 10, 2002, he will undergo the same lung surgery that he had on his right lung... on his left lung.
We are not sure of the next step but know that A.J's team of doctors will be looking at a variety of options... including a Liver transplant. There is no question that his stay at and near the U of M hospital will be well into next summer and possibly well beyond. You will be proud to know that his doctors are going to all lengths to save his life. The care and expertise is amazing and humbling.
Believe it or not, we have had to begin preparing our home in Gilbert, Minnesota, for A.J.'s impending return. He can not return to a home that is infested with mold and other bacterias that are prominent in older homes.
Our home was a boarding house for Iron Miners in the early 1900's and was built in 1912. It is a house with great construction properties and has been well cared for over the years. Sadly, this does not keep the mold, etc. from taking hold in the house. We, by way of a GOD send, were able to access a grant that helps people in our EXACT situation. We have begun the first step in making our house safe for A.J. and that is is to side the outside of our home.
Certainly, siding our home would not be possible given our current situation, but the Social Workers assigned to A.J.'s case keep us "on the ball" and assist us on all the unknown facets of having a critically ill child. We believe that GOD and all of your prayers are helping to! There is no other explaination... is there?
We are learning that: " Miracles are instantaneous; they cannot be summoned, but they come of themselves, usually at unlikely moments and to those who least expect them... (katherine a. porter)...
We have learned that nothing is impossible... that all things have their own pace to life... a pace that we cannot control, that today is all we have (as difficult as that seems), that the daily trials and tribulations of life... expected and unexpected... happen in everyone's life, and that GOD loves us... he truly does...
Thank you for your visit. You have helped to make today more special to the Toivola family. You will never know how much YOU have helped us along!
Wednesday, November 27, 2002 at 07:00 PM (CST)
One can not fathom how special you make us feel... when you write your words encouragement, hope and love. By visiting the A.J.Toivola website you have done your special deed for the day. You are a very special person to take the time to think of the welfare of others while being buried by the pressures and demons of your life...
Today at 2:30pm A.J. was moved from the pediatric intensive care unit to a regular room "back" on the pediatric oncology unit. His breathing is much improved, the tube leading from his right lung has been removed, and he is now without the dreaded catheter. I nearly fainted when they pulled "that baby" out! (Men, I think you get the picture... without the graphics)...
A.J. has received one (1) blood transfusion and has begun to cough more normally. He is experiencing great belly pain due to intense constipation... this is one of the many severe side-effects of the strong narcotic medicines he has been exposed to. As an old friend used to say..."there's fun in the water but danger too"! It seems in this "cancer business" that every thing used for a life saving purpose also has potentially life threatening side-effects..."IF THE THUNDER DON'T GET YA' THE LIGHTNING WILL"!
We have not received the lab results regarding A.J.'s non-identified tumors. The surgeon believes, however, that the surgery was completely successful. This reminds me of a quote conjured up in my weird brain that remembers very little. The quote is from the writings of Ruth Bell-Graham:"As a parent; my job is to take care of what is possible and trust GOD with the impossible"... and so it goes.
Ufta! We wish you the very best of this holiday weekend. Your presence in our lives is immeasurable. I leave you with a poem... so very awesome and so very true:
ROBIN
So I am glad not that my loved has gone,
But that the earth she laughed and lived on
was my earth, too.
That I had known and loved her,
And that my love I'd shown.
Tears over her departure?
Nay, a smile
That I had walked with her a little while.
This poem was written and sent to President George Bush Sr. and Barbara Bush by a friend after their 3-year old daughted died from leukemia.
May GOD bless each and every one of you...
DT
Monday, November 25, 2002 at 06:51 PM (CST)
This is A.J. Toivola's Homepage. He is a special little boy who has taught even his elders how to live a more fullfilled and happier life. We welcome your presence. You bring glimmers of light to the occasional darkness we are all FORCED to face.
Addison had surgery to remove the cancerous tumors from his right lung today at noon. The surgery took an hour and a half and produced five (5) nodules. Dr. Leonard indicated that two (2) of the tumors were cancerous and the remaining ones needed to be examined/biopsied further.
Dr. Arnold was able to successfully remove ALL of the cancer from the lung. GREAT NEWS! A.J. is currently recovering in pediatric intensive care. When Deb asked why the intensive care... Dr. Arnold grabbed her gently by her two (2) cheeks... and said... "because we have too much invested in this one!"
No matter your religious/political views of this time of year, please take the time tell your family that you love them. Life can change in a split second... Take the time!
A.J. will be hospitalized for about a week and then will begin a 5-day series of chemotherapy, followed by 2-days off... and completed with an additional 5-days on the chemo. He is a brave, courageous, and loveable little boy... he has taught his family so much about life... if I have rambled more than usual please understand... "this ain't no Disney Land!"
DT
Thursday, November 21, 2002 at 03:40 PM (CST)
Hello, Happy Holidays, and welcome to Addison Jasper's own homepage! Your visits and words of encouragement are so very meaningful to our family. They help to provide some normalcy to the very "different" life we have been living. THANK YOU!
A.J.'s team of Oncologists and surgeons were not entirely happy with the last "round" of chemotherapy. The medication killed "some additional tumor" but there appears to be a significant amount of it... left and alive! Obviously, not what one wants to hear regarding the progress of their three (3) year-old son...
The plans have changed and now include removing the tumors (one in each lung)from his lungs. The first surgery will take place on Monday November 25, 2002. The surgery is scheduled for 12:00noon.
After an approximate week in recovery, A.J. will undergo chemotherapy for 5-days on, 1-day off, and 5-more days on. He will have the other lung operated on immediately after the completion of the round of chemotherapy.
Human nature forces one to ask... "why all of this mad rush?... everything seemed to be moving in the right direction..." Frankly, due to the slow shrinkage of A.J.'s liver tumor, the team must now prepare for the real possibility of a liver transplant. He can not have any cancer in his body (in other places/organs)to be a transplant recipient. Hope has not evaporated... the medications continue "kill" the tumor but not at the rate of speed the physicians prefer to see.
God has provided us with the gift/ability to live one (1)day-at-a-time... never did one imagine that this gift would be so great in nature! The gift sustains us and allows us ALL to keep moving in the right direction.
Addison appears, at this point, to be scheduled to be with us here at the Ronald McDonald House for the Christmas Holiday.
As of today... A.J. is smiling, laughing, screaming,crying, running, and agitating like most other three (3) year olds. He is a warrior!
DT
Saturday, November 16, 2002 at 10:36 AM (CST)
Welcome to Addison Jasper Toivola's Home Page! We thank you for your interest, caring, prayers, and the love you have shown AJ.
Another week has come and gone. One can not help but wonder "what is it all about"? A.J. presses on as if this were all a part of a regular and normal life. Simply amazing!
As many of you are aware, the physicians have been worried about AJ's kidneys and their ability to function. The specific kidney test is called a G.F.R. test (yes, another acronynm). One must keep their kidney function number well above forty (40). At the time of A.J's last test, his kidney function test revealed his kidneys were functioning at a level of forty-eight (48).
On Thursday November 14, 2002, A.J. underwent his most recent post-chemotherapy tests (a full day of testing). Amazingly, his kidney function test revealed that his kidneys returned to a working level well above 70. This is surely good news. On the other hand, his C.A.T. Scan showed that his tumorous liver showed no change from his last scan. Remember, he has a C.A.T. Scan after each round of chemotherapy. We are certainly pleased that the cancer has not grown or spread. It is difficult, however, not to be disappointed...
So... while we are not sure of what chemotherapy A.J. will begin next, he will probably return to a series that will include five (5) days on the medication and two (2) days off... and another five (5) days on.
On a light hearted note, A.J. is growing his hair back and his gorgeous eye lashes have returned. Surprisingly, his blond hair is coming back in dark! And so it goes...
We wish one and all a great holiday season. Enjoy the moments of care free splendor... laugh often and much... do the things on your list... and above all forgive and love one another without reserve... before the chance "flies away"!
GOD BLESS and thankyou for all that you have done for AJ and THIS family...
T.
Friday, November 08, 2002 at 10:51 AM (CST)
You have reached AJ Toivola's CaringBridge Website. We are truly blessed by your interest, caring, and love for AJ and our entire family.
As stated before, AJ's journey "is not a sprint... but a marathon"! All of you would be extraordinarily proud of this child's bravery, fortitude, and level of happiness he expresses (on a daily basis)even with all he has endured...
On Wednesday evening November 6, 2002, AJ made a return visit to the hospital. His blood counts had dropped dramatically causing severe nose bleeds. Since the time of his admittance in to the U of M Pediatric Oncology Unit, he has received three(3)blood transfusions and three (3)platlet transfusions. We hope to have him back at the Ronald McDonald House today... Friday November 8, 2002!
AJ will not undergo his next round of chemotherapy for a couple of weeks. We are attempting to ready ourselves for the holiday season. For those of you who know AJ's mom... Deb... you are not surprised to hear that the decorating has already begun! We want to create a festive holiday environment for AJ, Ashley, and Austin. Why? The reasons are obvious...
We are preparing to make Minneapolis and the Ronald McDonald House our home(minimally) through the summer of 2003. AJ will have to absorb multiple chemotherapy sessions, three (3)surgeries (that will be six (6) total!), and a bone-marrow transplant. The in hospital stay for a bone-marrow transplant is at least 100 days... at least!
So... AJ's story... the Toivola family's story... is far from over. In fact, it has the feeling that "we have only just begun"!
Hopefully, you can now see how important your prayers, love, and support are to us. Sadly, AJ's website is being visited at a rate... that gives one the impression... that the reader believes that his journey is reaching it's conclusion. Remember... it has "ONLY JUST BEGUN"!
Your messages of love, hope and support have sustained us. We count on them to relieve the misery and give us an "injection" of hope and happiness!
God Bless to one and all who visit this site,
T.
Saturday, November 02, 2002 at 08:39 AM (CST)
Thanks for visiting AJ's webpage. We are so very grateful for your interest his PROGRESS! One cannot imagine how your words of incouragement help to sustain our entire family... We are honored that you take the time out of your "busy days" to check on our "baby".
Halloween... AJ has worn his "Batman" costume for the better part of the last week... really and truly it does not eem to bother him... even when no one else is dressed up! He struts around as "Batman"... and that's THAT!
In a few days this journey will have reached it's seventh month! AJ has endured through it... beat the odds... and appears ready to take on "the rough road ahead". He made it through a 100 - hour chemotherapy treatment this past week. He kept his appetite, humor (for the most part), and kept his weight stable throughout... all could be termed "miraculous"!
AJ was allowed to return home yesterday... November 1, 2002... He was so "fired-up" to be back at the Ronald McDonald House and amongst "all" the other children. He appears to make significant progress while he is at the "House".
The Minnesota Timberwolves have made the Ronald McDonald House their primary charity for the 2002-2003 season. On Friday November 1, 2002 they presented a check for $10,000.00 to Executive Director Meg Katzman and to "little AJ". It was a wonderful opportunity and was a delightful experience for Addison to be at center court for the ceremony. All of these events have a very positive impact on his HEALTH and help the Ronald McDonald House raise the money they so desparately need.
He is "home" and our lives seem so special. Each event carries with it a sense of the holiday season. Just think, it was only a short time ago that AJ didn't seem to have a chance. He is a remarkable human-being...simply remarkable...
DBT
Saturday, October 26, 2002 at 12:26 PM (CDT)
Hello friends and family... and, of course, to the many,many well wishers. You have made an enormous impact on AJ's life... and the life of his entire family.
Yes, yes, yes! you have tuned in to the AJ update page... and we welcome your very presence... you are working miracles with all of your thoughts and prayers. Remember... our angel was supposed to live... but two months...UFTA! That was difficult to say... as this has been to endure... but hey... we are still in the first period of this game of life... we can NOT win and be sad at the same time... they simply do not mix...
We must climb on... as these foothills will change to rocky and mountainous trails... all leading to the coveted summitt... the pinacle of our existance... giving and saving LIFE!
Addison was the guest of honor at this year's Ronald McDonald Midwest Charities Gala. The event was held on Friday October 25, 2002 at the Metropolitan Ball Room in Golden Valley, MN. The evening was full of "pomp and circumstance"... Don Shelby was the Master of Ceremonies. Mr. Shelby is a local T.V. anchor person who is well known in the Twin Cities area. Our family sat at the front table and spent 10 minutes on stage while their father (me) spoke on the MIRACULOUS Ronald McDonald House... (yes...funny as it seems... I can still read, write and speak)...I tell you that this place(the Ronald Mcdonald House) sits on sacred ground...SACRED! Our children were so good... and AJ was a huge... HIT! It was one of finest family nights this family has EVER had... ever!
After a great family day on Saturday October 26, 2002,(Including attendance at Como Zoo's "Boo Zoo's" Halloween costume party)AJ will return to the hospital on Sunday and engage in the trials of his 6th round of strenuous and exasperating chemotherapy... Saturday a normal 3-year old (with a bald head)... Sunday back to being a very sick hospital resident... what more can I say...
We love all of you. We remind you that we could NOT continue this journey without YOU!
Happy "ALL HALLOWS EVE" AND GOD BLESS ONE and ALL!
T.
Wednesday, October 16, 2002 at 02:39 PM (CDT)
Hey, hey, hey... thanks for visitng the sight... that is all about AJ!!!
Man... sometimes finding a WORKING computer can be "dang" near impossible! Now computer dependent... I often reflect on: What did I do before computers became a necessary part of an American's life???
Looking at AJ last evening... smiling, giggling, talking...etc., I could not help but think of a comment a professional athlete (from the 70's) made after losing his "shot" at a World Title.
He said: "I have a different perspective on life now. I know how precious everyone's health is, how precious each day is."...
If Addison Jasper could speak with great articulation, I know he would be saying (and believing) the same things... his family certainly believes in EACH and EVERY word of this great quote!
Hepatoblastoma is a very rare form of Liver cancer. It effects 1/1.5 million people. To a great degree, it effects children 2.5 years of age and under.
AJ's hepatoblastoma had spread from his liver, into each of his lungs, and (also) crept up and into the Aorta of his heart. Because the cancer had spread, AJ's cancer is termed a Stage IV cancer. This is the worst possible level prior to a condition being noted as "terminal."
The doctors recently shared with us their original perceptions upon AJ's admittance into the hospital in April, 2002: "We felt that AJ's prognosis was not good at all. If we could keep him alive (which was not promising) for 2-months... we would have an improved chance of saving AJ's life. We honestly did not believe he would survive."
AJ's little body has tolerated the three very strong chemotherapy medications he has been exposed to. He has endured seven courses of these very difficult treatments. After each session of chemotherapy is completed... Addison cancer has DIED... "bit-by-bit." He will complete his seventh and current round of chemotherapy on Saturday October 19, 2002.
After a seven to ten day break "in the action", AJ will begin being treated with the viciously strong chemotherapy agents that proved to be successful (and life saving)prior to his September 9, 2002 surgery.
While we know Addison will have to have 2-3 additional surgeries, they are not planned at this time. The hope being, of course, that the chemotherapy will continue to have great success in shrinking/killing the cancer. When the cancer on his liver proves to be much smaller, they will then plan the next surgical procedure. Always keep in mind that after all of these courses of "chemo" and surgeries, AJ will then be prepared for a Bone Marrow Transplant... YIKES!!!
Addison's current course of "chem-therapy" has gone quite well... well enough to allow him two (2) half day passes to the Ronald McDonald House and two (2) full day passes as well! The trips back to "the house" allow AJ the chance to play with his siblings and the other "kids". These "trips" back into "normal" life have an enormously positive impact on AJ's condition! It is simply remarkable...
On average, 2.7 out of 10 people survive Hepatoblastoma. Due to AJ's successful courses of "chem-therapy", and his ability to tolerate the surgeries he has undergone... it appears that AJ has placed himself in contention to beat his very strong opponent... Hepatoblastoma! He has an enormous will to live and is always striving (at full speed) to get back to the business of being a child.
He has a great attitude, is able to smile and laugh, and play mischevious "pranks" on his family members. It is an honor to be his father... I have learned so very much from him...
We are so very thankful for all of your messages of hope, love and support. It appears that we will be here well into next summer... please continue your virtuous prayers and support of Addison Jasper... A LITTLE GOES A VERY LONG WAY!"
We feel so honored to have your support. We are simply dumb-founded by all of your intense giving. We have another 6-12 months here... we hope that all of your prayers continue...
WE LOVE YOU... ONE AND ALL!
BOO,
Mr. T.
Thursday, October 03, 2002 at 04:10 PM (CDT)
WELCOME ONE AND ALL TO "ADDISON JASPER'S JOURNEY" JOURNAL UP-DATE
As always, we thankyou for taking the time out of your hectic lives to visit our major line of communicating with the world about AJ.
"All this will not be finished in the first hundred days. Nor will it be finished in the first thousand days, nor in the life of this administration, nor even perhaps in our lifetime on this planet... BUT LET US BEGIN!"
- John F. Kennedy's Inaugaral Address
This piece of "speech history" provides us with a slice of inspiration from which we "all" can regroup from the throws of the post-surgery saddness many felt. AJ's illness is "a marathon and not a sprint..." and after all has been said and done this week... we are continuing to make headway. Yes, that is right... AJ continues to go through "hell" but is working through the foothills and peaks that will eventually lead him to HEAVEN... HEAVEN ON EARTH... that is !!!
Today, he has taken several hallway long walks. He even had small appearences of his unique strut... his walk was at times brisk... amazing... simply amazing! He had an entire floor of nurses, doctors, custodians, cooks, etc. cheering him on. Such a glorious thing to observe.
On Monday, believe it or not, he will begin his next round of chemotherapy. This round will last for 2-weeks. His tumors are chemotherapy receptive, responsive,etc. Basically... the "stuff" works!
AJ'S medical team is amazing. We know that we are in the right place... and feel it is during the right TIME in history.
Please continue your blessed support of the amazing "Bat Man" as it is through your prayers... that GOD listens.
GO TWINS... GO YANKS... GO AJ!!!
Toivo - means hope... LA... the place... translation: Toivola - means the "place" of HOPE!
T.
Friday, September 27, 2002 at 02:55 PM (CDT)
WELCOME TO "AJ TOIVOLA'S JOURNEY" JOURNAL UPDATE
As always, we extend to you our gratitude for taking the time to visit Addison's web site. Your visits make AJ and his entire family feel loved and a part "the community!" It is truly special to feel SPECIAL!
Addison is now in intensive care recovering from today's (Friday September 27, 2002) surgery. While AJ's body responded well to the surgery, we were not granted the specific and miraculous outcome we so desired.
Dr. Leonard's goal for today's surgical procedure was to "disect" all the tumor infested regions of the Liver and allow the remaining portion of his liver to heal and help AJ return to the "normal" world of being a three (3) year old boy.
Dr. Leonard WAS able to "debunk" or remove a large portion of AJ'S tumor but was held back from the pinnacle of his surgical procedure by the tumor's close proximity to one of the liver's large "portal" veins. His expert mind and hands simply could not risk what was at stake... a little boys life!
Addison's journey will, without question, be extended and much prolonged. The next step, after he recovers from today's surgical procedure, is to reassert the most aggressive course of chemo-therapy that can SAFELY be utilized. He will then undergo 1-3 additional surgical procedures. The goal, as it always has been, will be to remove ALL of AJ's cancer located in his:
Liver
Right lung
Left lung
Today, we were reminded again, that the route to Addsion's full and sustained recovery will be a slow and methodical "journey". He will not encounter one-single course of chemo-therapy, blood transfusion, or surgical procedure that will miraculously "cure" him and return us all back to our "normal" little world! It just "ain't gonna happen" that way!!!
With today's surgery, we have continued on Addison's road towards recovery. This journey has GOD as it's expedition leader. He will determine AJ's course and how long it will take us to successfully complete it.
Since April, we have seen a steady positive climb in Addison's health. Surely, seeing AJ in the recovery room in such great pain, knowing that magical and miraculous surgical procedure we expected did not fully meet the "standard" as a miracle, and that our "little boy's" condition will most assuredly get worse before it gets better... gave us room for disappointment... and extraordinary saddness... However, not much room!
We must all be reminded that AJ is getting better. He has a team of physicians and surgeons who truly care about him and care deeply about saving his life, and he has people all over the world who love and support him!
It is now time to "relace the skates", "tape up the sticks", and remember one game (surgery) does not make a season! We will move forward, one foot in front of the other... all the way towards victory!
Keep on Truckin'... and may God bless you and yours!!!
T.
Monday, September 23, 2002 at 05:41 PM (CDT)
"AJ's Journey Journal Jottings"
It is amazing to think that AJ's journey started (unofficially)168 days ago! It has completely changed the way our family lives, what we view as important, and how we develop our priority lists.
The support of AJ and our family has been astonishing! The love, kindness, and respect we have been shown will forever aid us in our pursuit to be better people... each and every day!
Addison Jasper is at somewhat of "turn-style" in his race to be completely CURED of Hepatoblastoma. He has responded better to chemo-therapy than what his team of Oncologists predicted. So now the time has come, much sooner than originally planned, for AJ to be prepared for the surgery of his life...
In preparation for Addison's Friday September 27, 2002 (9:00 AM)surgery, he has undergone blood transfusions on Friday September 20 and Monday September 23, 2002. Going into the surgery, AJ must have strong blood counts and must be at a very "tough" all-around position health wise.
His surgeon, Dr. Arnold Leonard, has operated on more children suffering from Hepatoblastoma than anyone else in the entire world. He is an older person who has a world renowned reputation as a pediatric surgeon. He is another blessing GOD has placed in Addison's pathway to a full and complete recovery! He may be one of the most important pieces of "cobblestone" in the entire "strange and confused" road system that AJ has traveled...
As stated in a previous "Journal Jotting", AJ's cancer sits on the top portion of his liver. It grows out of the top of the liver but has receded away from his heart's Aorta and is no longer pressing on either of his kidneys. As you may know, AJ has been diagnosed with a Stage IV cancer. It has spread from his liver into both of his lungs. During the first (1) operation they hope to cleanly remove the cancer from his liver and remove one of the "small bumbs" of cancer from a lung. He will, as soon as he is able, have the other "bumb" of cancer removed from the "other" lung.
Time Line (*** ALL DATES AND TIMES LISTED ARE SPECULATION AND PREDICTIONS ONLY***)
Friday September 27, 2002
Surgery to remove Hepatoblastoma from AJ's liver and one of his lungs.
Recovery 8-12 weeks
December 1, 2002
Surgery #2 to remove the "bumb" from his opposite side's lung
Recovery 4-6 Weeks
February 1, 2003
AJ will undergo short but intensive rounds of radiation therapy and additional rounds of chemo-therapy.
April 1, 2003
AJ will undergo a Bone Marrow Transplant. This procedure will encompass a minimum of 100-days!
June, July, or August 2003
We pray that AJ will be able to return to our home in the great town of Gilbert, Minnesota!!!
The purpose of this time-line is to give the reader some idea of the length Addison Jasper needs to travel before he is free. One also gets a look at some of the purposed medical procedures being planned for AJ. Of course, these plans could be completely changed by mid-night this evening. The only one who really and truly knows is our FATHER... and we are comfortable keeping it that way...
Really... the day we have been waiting for... the first (1) day of reckoning is... Friday September 27, 2002. We have known since April 2002 that the tumor on AJ's liver had to be surgically removed if he were to survive. So it is now upon us... the time being right to lift our chins and straighten our weary backs in order to fully support our little "BAT MAN!!!"
We have come this far. We have no intentions to turn back now... or ever! God allowed us to participate in this epic journey as a family. HE gave us YOU to give us support and love... HE gave us ADDISON JASPER TOIVOLA to remind us that our trip through life is unremarkable if we can not stop along the way to help those who are in desparate need... and give of ourselves until we realize it is just this reason why we were placed here... on EARTH... in the first place!!!
GODBLESS all of you who have taken the time to pray for AJ and US ALL...we are so very honored to have secured such a place in the hearts, minds, or bellies of so many people... WE truly love one and all!!!
Thank you,
T.
Thursday, September 19, 2002 at 10:14 AM (CDT)
Welcome family, friends, and well-wishers to AJ's Journey Journal Jottings"... we thank you for taking time out of your busy lives to pay a visit!
Wednesday September 18, 2002 has come and gone. No, no surgery yet!
We met with Dr. "Arnie" Leonard, AJ's renowned surgeon, on Tuesday the 17th of September. He believes that he can disect the tumor out of AJ's liver. The tumor sits on top of AJ's liver and lives in the liver in the shape of a "half-moon." The tentacles of the tumor that were once in AJ's aorta (heart) have receded. Also, the tentacles enveloping AJ'S main vein going out of his liver have receded. This, of course, is all good news.
We continue to wait for AJ's blood counts to rise to a level that will make the surgery safe. If his blood counts are too low... he will not be able to fight off post surgery infections. This could prove fatal. So, we continue to "play the waiting game"!
To our surprise and great sadness... we were informed that if the surgery is not successful... AJ will not be a candidate for a liver transplant. His stage IV cancer (cancer that has spread to his lungs) prevents that from happening. So the surgery is the 7th game of the Stanley Cup playoffs and we are now into overtime! This will prove to be AJ's biggest game... ever!
While our attempt is to provide you with a positive take on AJ's journey, one must be aware of the facts. What AJ (and his family) have gone through to date is simply "peanuts" compared to what the next stage of the "trip" will be. To put it in other terms... HE NEEDS YOUR THOUGHTS, PRAYERS, AND SUPPORT NOW MORE THAN EVER BEFORE!!!
As always, we express to you our sincere gratitude and respect towards one and all for your endearing love and support. Please take care of yourselves and get out and HAVE FUN!
t.
Friday, September 13, 2002 at 04:14 PM (CDT)
HELLO... ONE AND ALL! WELCOME TO "ADDISON JASPER'S JOURNEY" JOURNAL UPDATE (Whew... that is a mouthful)
Tick-tock...tick-tock...tick-tock...tick-tock...tick-tock goes the sound of the clock! We have been immersed in a waiting game...no, no one to blame... still it is a shame when one's life is controlled by a doc!
Addison's CAT SCAN of September 9, 2002 did not turn out well enough for the surgeon to determine if he is ready for surgery. The surgery, scheduled for Wednesday September 18, 2002, hinges (now) on the results of an MRI administered to AJ on Friday September 13, 2002. (Yes, one is aware of the hull-a-baloo related to Friday the 13th!, Freddie, and all the rest of it!)
Other than AJ's beautiful bald head, he looks and acts like most other 3-year olds. His muscle atrophy, from months in the hospital, is beginning to lift and he is really running now... rather than simply swinging his "little" arms really (really) fast! He truly is a remarkable little boy...
So... in an effort to keep you updated and riding with us on "AJ's Magic Bus" we have had to take to using a U of M Hospital computer as Ronald McDonald's system was fried during a recent(and profound)electrical storm.
We ask that you check back in a few days... we will know by then whether AJ's day of reckoning (surgery) will happen on Wednesday the 18th of September.
Over three-thousand visitors have checked this sight out. We are truly honored by the outpouring of support that has been shown our family. Every time you visit... remind yourself... that you are "making a difference" in the lives of one American family... a BIG difference!
The Serenity Prayer
God...
Grant me the SERENITY to accept the things I can not change...
COURAGE to change the things I can...
and the WISDOM to know the DIFFERENCE....
Author Unknown
T.
Friday, August 30, 2002 at 10:23 AM (CDT)
Hello Everyone... and welcome to "A.J's Journey" Journal Page
A.J. is currently at "home" at the Ronald McDonald House. While his blood is low... he had a blood transfusion on Tuesday August 27, 2002... he continues to be upbeat and enjoying his time with his family (especially Austin and Ashley!)and the other "Ronald McDonald Kids".
Recent communications with family, friends, and well wishers have reminded us that many people are unaware of the length and seriousness of A.J.'s "Long Strange Trip"... especially the one ahead of him!
First, he has been under treatment for a rare form of Liver Cancer refered to as Hepatoblastoma since April 18, 2002 (at the U of M). His cancer is a stage four (IV) cancer. It is defined primarily as a Stage IV cancer because it is NOT confined simply to his liver. It is also located in each of his two (2) lungs. This is not new news... we have known this from the very start.
Since April, A.J. has endured five (5) intense courses of chemotherapy, three (3) minor surgeries and countless weeks in the hospital. He has never stopped smiling and has always claimed that things were "good"!
Fast forwarding to now...
*On September 9, 2002 he will undergo another CAT Scan. If the tumor has become smaller he will have surgery on September 18, 2002. If the tumor continues to not be small enough, but is dying, they will do another course of chemo-therapy.
* Surgery is imperative. He will have surgery to first remove the tumor IN his liver. He will recover for, minimally, eight (8) weeks. He will then undergo surgery and/or surgeries to remove the tumors in his lungs. Another lengthy period of recovery will be warranted after these proceedures.
* A Bone Marrow Transplant is (also) imperative. This is an enormously lengthy procedure and will take several months from start to finish... if everything goes well!
Little A.J.'s course has been a long one. However, let the truth be known and accepted... he has only just begun and the REAL FIGHT FOR HIS LIFE LIES AHEAD! In fact, his minimum return home date (to Gilbert, Minnesota)will be June of 2003... that's right!... the Toivola family will not be home (minimally) until next June!
Whew...! Reality bites!
Writing these facts is not easy. While we attempt to keep A.J.'s journal entries upbeat, we also want our readers to be informed of the FACTS!
We take one-day-at-a-time... keep smiling... spend as much time together as possible (without killing one another), try and help other people, and trust that the infinite power of GOD will see us through. Emotionally speaking... HE has provided us with a great amount of strength, positive thoughts, and a focus only on WINNING this battle! Nothing, at this point in our lives, is more important than to help A.J. beat the odds and be VICTORIOUS!
Happy Labor Day Weekend to one and all! Thankyou for all that YOU have done for us. Remember... when we give... we receive!
T.
Friday, August 23, 2002 at 11:34 AM (CDT)
HELLO... AND WELCOME TO "A.J.'S JOURNEY" HOME PAGE
Wonderous! That what today is! Like a "bloody" holiday! Addison will be discharged from the hospital and come "home" to our humble abode at the Ronald Mcdonald House!
His fifth course of intense chemotherapy went astonishly well. He did not throw-up, become ill, lose his appetite, etc. Infact, for yesterday's lunch he ate: a ham sandwich, two and-a-half pieces of fried fish, a banana and-a-half, and a pint of milk! That was just lunch!
A.J. will have his next C.A.T. Scan on Monday September 9, 2002. At that time, they will determine if surgery is the next course of action (if so...the surgery has already been scheduled for Wednesday September 18, 2002)or if another course of chemo-therapy is warranted.
A.J.'s body (particularly his kidneys) will only be able to endure one more course of the strong chemo-therapy medications he has been treated with... so if, overtime, he will need more chemo-therapy beyond a sixth round... it will be with different medications...
So, for the next few weeks, we will be able to be together... away from the hospital... and do stuff like "regular" families... like you!
On a final note... During A.J's hospital stay we experimented by having Austin and Ashley stay at the hospital overnight. The baby so loves his sister and brother... and when they were away... he became sad and withdrawn ... Needless to say, the experiment paid off! No change in appetite, no vomitting, no other illness and incredible happiness... THE POWER OF GOD AND THE FAMILY IS REAL FOLKS!!!
GOD BLESS all of you for your on-going prayers, love, kindness, and support... Remember... without YOU none of this would be possible... and with YOU we WILL (and HAVE)witness a MIRACLE!!!
T.
Saturday, August 17, 2002 at 12:21 PM (CDT)
THE TOIVOLA PAGE!
We are glad you made a visit! Today, just hours ago, A.J. made the disheartening and lonely "trip" back to the hospital.
As stated in the previous "update"... A.J. will not have the surgery originally scheduled for Monday August 19, 2002. Rather, he will begin another session of 100 hours of continuous drip chemo-therapy... later today...
There is no question that delaying the surgery is the right "move". He has handled the chemo-therapy extraordinarily well and the cancererous tumor has shrunk and "died" to an extent the physicians were not expecting this early in "the journey".
So with the success of the chemo-therapy medications and Addison's resilience... it makes complete sense to continue this course of therapy "to the max!"... keep on "killin that mean ole cancer" and get Addison back to the world of "normal" little boys!!!
You simply would not believe how Addison's health has improved since April. He is so full of life and "piss-n-vinegar" (no offense intended). It has been so fun to have him at the Ronald McDonald House with us. He has enjoyed his family and all the other "kids" at "the house". It is impossible to describe the inner joy and happiness that seeing him well brings... completely impossible to describe!!!
So back to the hospital and our hospital schedule...
God bless YOU and yours... and thank for visiting...
T.
Monday, August 12, 2002 at 08:04 PM (CDT)
Welcome... One and All... to Addison Jasper Toivola's latest journal entry...
Our latest "bit" of news is summed up best by a lyric from a Robert Hunter (Lyricist for The Grateful Dead) tune... "Life may be sweeter for this... I don't know...See how it feels in the end..." (Crazy Fingers)
At 4:30 PM on Monday August 12, 2002, we were informed by Addison's team of Oncologists that his surgery scheduled for Monday August 19, 2002 has been post-poned indefinetly.
While there are a number of reasons for this... the main reason appears to be perfectly clear... His MIRACULOUS response to his previous 12-weeks of chemo-therapy... makes "the team" feel that the best course of action is to continue the chemo-therapy treatments for, at least, 100 hours... and go from there!
This may be the best thing that could happen... we just don't know... but it has happened for a reason... this we are are sure of...
Our disappointment is minimal. We believe FIRMLY that whatever direction this journey takes... our son will survive... and live a wonderfully gifted life!!! So...
We ask that you amplify your prayers, love, and support of our "little boy"... he needs YOU now MORE than ever!
If you are interested in donating to one of Addison's Trust Funds you can contact one of the following fund trustees:
Mr. Terry Bizal
Addison Toivola's Eveleth-Gilbert Fund
218.744.7707
Mr. Steven "Dar" Anderson
The Addison Toivola Irrevocable Trust Fund
651-286-4802
The public is reminded that these trust funds are not managed by the Toivola family. They are managed closely by Trust Fund Trustees and, in the case of the Eveleth-Gilbert Fund, a committee also reviews the needs of Addison and his family. The Toivola's DO NOT have direct access at the Trust Fund Accounts... the accounts are carefully and conservatively managed to help support Addison and his family during this horrific time!
It is now August... the summer is fleeting... get out and enjoy yourself... with your family... you never know when it may be your last...
God bless, love, and kisses...
T.
T.
Tuesday, August 06, 2002 at 04:36 PM (CDT)
Please accept an enthusiastic "WELCOME" to Addison's webpage journal entry! We are honored you could make it!
Today, we were able to meet with Dr. Arnold Leonard, the esteemed surgeon, who will perform AJ'S surgery on Monday August 19, 2002. The fact is... Dr. Leonard has done all of AJ'S surgeries/biopsies since he has been here. It is (also) important to note that as far a Hepatoblastoma (rare juvenile form of Liver Cancer) surgeries are concerned... Dr. Leonard is reputed to be the best in the WORLD!
Dr.Leonard opened the office visit by telling us the raw facts... that he will not be able to determine if this cancer is curable until "he gets in there... and sees for himself". He also stated that he will be consulting with another expert in the field of laser surgery. In AJ's case, they will use two (2) lasers once they get inside and to his liver. The first laser will delicately cut away the cancerous portion of the liver while the second laser will reduce most, if not all, of the blood loss from the liver.
He went on to say that this surgery presents great risk so they will need Addison as healthy as possible and take their time with the procedure. In addition, he stated that he is over-joyed with the progress he has made since the time that he performed AJ'S liver biopsy in April.
At the conclusion of the meeting... Dr. Leonard reminded us of the surgery date (Monday August 19, 2002), gave us his HOME telephone number, and gave Deb a warm and sincere hug...
Given his demeanor throughout our journey, Dr. Leonard IS with AJ and our family from beginning to end. This, one may say, raises our over-all confidence...!!!
AJ, as this is being written about him, is running, laughing, and playing with his sister and brother and the other children of the Ronald McDonald House... LITERALLY...outside on the playgrounds on the property.
REMEMBER: He did not move and was on an "around the clock" morphine drip line just four (4) months ago... he layed in bed with a sad frown on his "little" face... unable to be humored or enjoy basic love form his parents and siblings...
So... have we viewed a miracle and or the hands of a higher-power at work? The answer is obvious! Come and see him run around like the perfectly healthy 3-year olds in your family.... Despite the many doubts of man-kind... there is a GOD...
We plan to leave for Duluth's Canal Park on Thursday August 8, 2002. We earned a free night at the wonderful "Inn on Lake Superior"! We intend to enjoy this holiday away from the "real" realities of life that plague us and to enjoy a few days of making memories...
Please keep AJ (AND THE REST OF US!) in your thoughts and prayers. Your kindness, support, and words (and acts) of love have inspired us... and help us "make it on down the line"...
T.
Monday, August 05, 2002 at 09:12 PM (CDT)
A sincere welcome to the dear friends and family of Addison Toivola.
As stated in our last update... If all goes as planned... A.J. will undergo his first of two (2) surgeries on Monday August 19, 2002. His surgeon, Dr.Leonard, will remove the cancerous portion of his liver and a small tumor off of one of his lungs (he has small tumors on each of his lungs... they have not been determined to be cancerous... but we are taking no, zero, "not-ta" chance).
Deb and I, infact, will meet with Dr. Leonard, on Tuesday August 6, 2002. He will, at that time, discuss with us the specifics of his surgical team's plans for the August 19, 2002 surgery.
Our family has had the honor (recently) of meeting up with life-long friends from ... both... the "Iron Range" and Mora, MN. I began my teaching/hockey coaching career in Mora the late 80's. Mora is a great town with wonderful people... just like our small "Iron Range" communities!
On Thursday and Friday of this week we hope to take a small family vacation to the Canal Park section of Duluth. We have earned a free night's stay at "The Inn on Lake Superior" so our plan is to "use it up" and "LIVE IT UP..."!!!
We received good news regarding A.J.'s blood counts today and the blessings from his team of Oncologists... so... our plan is to go and make memories... for us all!
A.J. has been in rare form the last few days... FULL OF HELL!!! ... to put it bluntly...
We never thought we would enjoy his misbehavior, arguing, practical jokes, and continual sarcastic laugh... but it is so very special to see all of his personality traits get back on track. Especially, given the fact that he rarely moved, ate, or talked for his first FIVE-WEEKS in the hospital! Needless to say, disciplining him is horribly difficult... but sometimes necessary (aaagh, boo-hoo, snivel...snivel)!!!
We leave you with a sincere reminder of what all of you have meant to A.J. and our family. We literally feel your kindness, support, love, etc. with each piece of mail and/or e.mail.
Our hearts are filled with an enormous amount of GRATITUDE, HUMILITY, RESPECT, and LOVE for each of YOU!
May GOD BLESS YOU and YOURS!
T.
Tuesday, July 30, 2002 at 09:36 PM (CDT)
You have now entered the mystical realm of AJ's webpage update... We are overjoyed that you made it!
Today, Tuesday July 30, 2002, will be remembered as one of the significant mile-posts on AJ's long road trip.
We met with his prize team of Oncologists and Surgeons and they believe, due to his significant progress, he appears ready to have the first of two (2) surgeries. The first surgery, to remove the cancerous portion of his liver and a small tumor on one of his lungs, has been scheduled for Monday August 19, 2002... WOW!
AJ's progress, to date, has astounded his team of physicians. They were not overly optimistic when he arrived at the "U of M" Children's Hospital back in April. His cancer was rare (Hepatoblastoma) and it was advanced... needless to say... their expertise, GOD's healing hands, and the prayers of thousands of people have proven to turn the tide of doom into ... one of HOPE!
After a period of recovery from the first surgery, AJ will undergo 8-12 more weeks of Chemotherapy and then undergo a second surgery to remove a tumor off of his other lung... Should all go as planned, he will then be prepared for a Bone Marrow Transplant!... Man... talk about a TENACIOUS "road trip!"
For those who may not be aware, AJ is only approximately one-tenth of the way into his "trip". He has a very, very long way to go. As always, we remain very optimistic! We firmly believe that "our baby-boy" will survive this... and live to skate another day at the Zim Skating Rink and drive his Grandpa Donny Aas's stock car to victory!
We graciously and respectfully request that YOU continue to PRAY for our "little-one"! Your cards of hope and support continue provide us with a great sense relief and peace. Simply knowing that you are out there "pulling for us" allows us to keep moving forward! Your support has, literally, been as important to us all as any other factor in AJ's treatment...
It is our hope, that between now and AJ's surgery that we will be able to enjoy a very special time as a family. We intend to "live it up" as much as possible! Afterall... we may never pass this way again...
May GOD bless YOU and yours... we SINCERELY thank each and everyone of you... today and forever!
DT
PS,
Just remember... If you get confused... just listen to the music play! (Jerry Garcia)
Saturday, July 27, 2002 at 09:05 PM (CDT)
Hello, and Welcome to Addison's Webpage Up-Date.
A.J.'s websight has been visited by over 2, 000 people... AWESOME!... yet... less than 100 people have signed-in and left him with "warm-fuzzies"... are your days really that busy? Now... tellllllllll the TRUTH...! Besides, believe it... when you hear it... "life IS too short!" So please take the time, leave a little "note" or message... HE/we truly love and NEED your words of support!
While the physicians are "extraordinarily pleased" with A.J's recent CAT scan, we will not know if he will be ready to have his scheduled surgery until the data has been reviewed by the team's expert surgeon on Tuesday July 31, 2002. We pray that these TRULY BRILLIANT experts will arrive at the very best plan... surgery or no surgery on August 5, 2002!
A.J. News alert!
For those folks who are not aware (or may have forgot), A.J.s road back to his "Iron Range" roots will be a very long one. We are planning to remain between the U of M hospital and The Ronald Mcdonald House through (minimally) next June...2003! That is... if A.J. responds favorably to all the procedures that are planned for him... Of course, this raises many stressfull concerns that force us all to focus on a "one-day-at-a-time philosophy!" As stated many, many, different times... we WILL do whatever it takes to help Addison survive and keep our family together... PERIOD!
Now back to our regularly scheduled "up-date".
A.J's blood counts have not responded well enough to have him return to the Ronald McDonald House and his family. He has had four blood/platelet transfusions this week... the last being on Friday July 26, 2002. Yes... he remains in the hospital...(BOO!,BOO!) but as usual... he is full of LIFE... playing, yelling, giggling, laughing, hugging,"SMOOCHING" and making "everyone" laugh around him. He has trouble talking... but no trouble communicating ... if you know what I mean!
A.J. enjoyed the warm visit of his "PAPA BUCE" AND "MAMA MERRY" (grandpa Bruce and grandma Merry) over the weekend. Their visit bolstered his (and their) spirits... dramatically. Grandparents play a vital role in their grandchildren's lives...
Addison's dietary selections this week would have made any kid brim with happiness... Doritoes, Rice-Krispy bars, and chocolate milk... full-time and all - the - way... baby! If they aren't eating anything... physicians, nurses, and Moms will resort to "any means possible" to "get calories into the system...!" While all of this could be taken seriously... one simply has to laugh ... out loud... over some of the "stuff" that has gone on in "little A.J's" journey... some of the experiences have simply been hilarious!
We simply do not have the road map for this trip... we are relying on GOD and the doctors to show us the way... we do know that the positive attitudes of all those who have come in contact with A.J. have made an enormous difference in his health... ENORMOUS!
So... please keep those cards and letters of support rolling in...we are only on mile-post 10 of a 1000 mile road-trip... and most of it will be in the mountains (up and down)... we need you...Addison Jasper needs YOU! You have made all the difference in the world...
WE SEND OUR LOVE TO ONE AND ALL...
GOD BLESS AND GOOD NIGHT!
T.
Sunday, July 21, 2002 at 05:02 PM (CDT)
Welcome to one and all to A.J. Toivola's website. Thanks for taking the time for a visit...!
It is with great/cautious enthusiasm that we "update" A.J.'s website. We know that the readers of "the site" are family, friends, and "well-wishers" who sincerely care about "the super-hero in training"...AJT!
One of the less fortunate aspects of chemotherapy is the effects it has on one's blood. While A.J's blood was stable through Thursday of this week (he did receive a precautionary blood transfusion on Thursday), we could see a change in his health by Friday. This meant that his "blood counts" were dropping and we needed to watch him very closely. By Saturday night at 10:00 PM, Addison had to return to the hospital due to a high fever.
Since entering the Hospital, he has had his lungs x-rayed to determine if he had contracted pneumonia (they were "perfect"), had another blood transfusion, and two (2) blood platelet transfusions... ALL WITH IN LESS THAN 24-HOURS! What did you do this weekend?
A.J. is not particularly fond of the hospital any longer. He requested that his identification bracelet be placed around his ankle. "Mom-Toivola (Deb)" speculates that this is so he does not have to be constantly reminded of his presence in the hospital. Based on the emotional strength of his request... I ain't gonna argue!
A.J. was able to have three (3) eventful days (M-W) with his family. He enjoyed beating the high heat and humidity of the "Twin Cities" by playing at Cereal Land and the arcades at the Mall of America. What he likes the most is to play with his sister and brother... Ashley and Austin... and being in a "normal" (YEAH RIGHT!) family environment. He just loves his sister and brother... they mean everything to him. Above all the other reasons, and there are many, that is why we are determined to keep our family together... and here. This is a journey we are dedicated to... one and all!
This week will mark the second phase of Addison's battle. The first phase, of course, began in April and ended last week with intensive and aggressive chemotherapy. This Thursday... July 25th... Addison will undergo an all important CAT Scan to determine if the chemotherapy has "shrunk" his tumor "enough" to have it disected from his liver.
On Monday July 29, we will meet with his physicians and surgeon to review the results of the scan and determine if he is ready for surgery. If he is ready for surgery he will have it performed on August 5, 2002. If not, he will undergo twelve (12) more weeks of intensive and aggressive chemotherapy. Either way, this "second phase" of treatment will prove to be ... in the words of the Grateful Dead... a long strange trip!... and a very difficult one...
Both Ashley and Austin have learned to ride a bike this summer. They are now cruising (with their PaPa) all over the U of M campuses and up and down the bike trails and neighborhoods situated along the Mississippi River. They are also involved a couple days a week in the Ronald McDonald House Summer Activies Program. This week will find them at the Como Park Zoo and at an area Roller Rink. They have made friends from many parts of the United States and the world. For instance, one of their current close friends is a young lady from Egypt! The exposure to people of different cultures promises to be an experience they will not (if ever) soon forget.
Throughout all, A.J. continues to remain VERY positive. To all who ask how he is... he responds... "good"... and to anyone who will listen... he says... "my belly is better"! Talk about getting up and getting "back on the horse"!
In many respects, that fight has just begun! We continue to relish your support, love, and acts of kindness. You have opened our hearts, taught us enduring lessons of life, and have shown us... directly... the true power of PRAYER! Please keep it up!... thanks to one and all... from the bottoms of our hearts...
Mr. T.
Sunday, July 14, 2002 at 01:34 PM (CDT)
Welcome to this week's edition of:
The Addison Toivola's Adventures.
While A.J. didn't "kiss Sasquatch (Big Foot)on the nose", he did have a week that even artic explorer Will Steger would have turned back on!
On Tuesday July 9, 2002, A.J. began his 4th round of Chemotherapy since arriving at the U of M in April. A kidney test on July 8 revealed that his kidneys were not working at 100% but not insufficient enough to delay his chemotherapy. Each round of Chemotherapy lasts for 100 continuous hours... without a break! For those of you not "up-to-snuff" on your math...that's 4-days and 4-hours of continuous drip chem-therapy!
While enduring this therapy, that includes:continual nausea, vomitting, and very painful chemical burns in his "private areas"... A.J. finds time to listen to music, play with other children with cancer in the Oncology "playroom", paint pictures with volunteers, play board games, and watch Bat Man, Spider-man, Super Man, and many other "Super Heroe's" movies.
Another surprising activity A.J. participated in, this time around in the hospital, was walking. For the most part, he refused to be in his bed. He had a green chair that he insisted on sitting in. When he wasn't in his "green chair" he demanded that we take him for walks! This, of course, is no easy task with a child who is connected to(seemingly)more lines than at a Crispy Cream Doughnut Shop... but if A.J. wants to walk... we WALK!
If you think that John Wayne was tough... you have never been on a Pediatric Oncology floor and seen terribly sick and (possibly)terminally ill children fight to continue "normal children" activities... such as walking! It is simply astounding...
Once the Doctors were satisfied that A.J. was over the "roughest" part of the negative side-effects of the chemotherapy (which ended on Saturday morning), they began preparing him to return to the Ronald McDonald House. He was allowed to return to "the house" on Sunday afternoon. His returns to the "house" have become literally... "little holidays"...each day away from the hospital is so PRECIOUS...so very, very, PRECIOUS... and filled with unexplainable JOY!!! UFTA !!!(scandanavian)... Zeveo!(serbian)... Hooray! (american)...
For those of you wishing to contribute to A.J.'S Trust Funds please contact the Trust funds Trustee/Managers:
The Eveleth-Gilbert Fund:
Mr. Terry Bizal @ 218.744.7707
The Addison Toivola Irrevocable Trust Fund:
Mr. Steve Anderson @ 651.286.4802
Thank you and GOD BLESS all of you who have prayed for A.J., have given your time and efforts to the charitable events held in his honor, and to those who have bolstered our family with words of LOVE, HOPE, COURAGE, KINDNESS, HAPPINESS AND SPIRIT!
Remember... God wants us to be HAPPY! So smile, laugh, help your neighbors, and tell your family members... that you love them ... every day... and you WILL be happy!
- inspired by Addison Jasper Toivola
Mr. T.
Sunday, July 07, 2002 at 08:51 PM (CDT)
Hello and welcome to the official A.J. Toivola website!
Denise Berry is on vacation... so the infamous "Mr. T" is filling in... Denise has done an extraordinary job in creating and expanding this website. We love her very much!
My, My... and... My has A.J. had a wonderful 4th of July Holiday! It started with his second check-up of the week on Wednesday July 3. His blood tests returned excellent! The nurse indicated that, while we still needed to be overtly cautious, he could enjoy a long-weekend of family fun as long as we stayed close to the hospital and as long as he wore his mask into public places and around people. Keep in mind that this was the first time Addison could join his sister and brother, mother, and crazy father in public!
And we lived it up!!! Our family, knowing this will be the last time we will be together for fun for a long time, enjoyed a Mississippi River Boat Ride, attended Camp Snoopy and the Mall of America, saw the motion pictures Lelo and Stitch and Spider-Man, went to Wal-Mart, Toys-R-Us, Target, downtown St. Paul, watched Minneapolis's traditional firework display and ate at a number of family restaurants. I may have forgotten something but the point is: we were together...just like the "old days"... giggling, laughing, arguing, playing, kissing and hugging...it was great!
Addison begins 100 hours of continuous-drip chemotherapy on Monday July 8. That means he returns to the hospital to resume the business of having his cancer cured. Sometime in the next 5-15 days we will know how successful the 12-weeks of chemotherapy and related therapy has been. We are praying that the tumor on his liver has "shrunk" enough to have his surgeon remove it. If it has not... A.J. is in for 12 more weeks of chemotherapy.
While A.J. is not out-of-the-woods yet (and won't be for a very long time) he has been a boy who has fully impressed the entire medical staff that has worked with him. He is unbelievably courageous, happy-go-lucky, and absolutely charming... he has endured this life or death struggle by keeping his priorities straight... he simply wants to play... especially with his siblings Ashley and Austin! God has provided for us all in a direct but unbelievable way...
On Wednesday July 10 the community of Hibbing, MN is rallying together is Addison's honor. They are having a fundraiser and expect to feed 2,000-3,000 people a traditional Italian meal of spaghetti and meatballs... oh yeah... and garlic bread! It sounds as if it will be a great place to see friends (old and new) and family. Get out and enjoy yourselves!
Deb and I have been overwhelmed by the support we have received from the people of Gilbert, Eveleth, Virginia, Hibbing, Duluth, Mora, Proctor, Minnesota and the good ole U.S. of A! It has touched us to the very core... we will never be the same... ever again... This incident has been horrific but as our Pastor has reminded us... it has blessed us with countless fruit... especially the love of family and friends. You have provided us with hope, courage, support, and LOVE! You have been our life-jackets on a stormy day on Lake Superior!!! God Bless all of you!
Please sign-in... your prayers are as important as any medicine A.J. receives...
Mr. T.
Saturday, June 29, 2002 at 06:09 AM (CDT)
Addison has had a relatively good week as he was able to stay out of the hospital until Thursday.
On Monday he received a blood transfusion as his counts were dropping due to the chemo. On Tuesday, his mouth sores reappeared (side effect of the chemo). By Thursday, however, his counts were very low and he was readmitted to the hospital due to the high risk of infection. He received another transfusion and is receiving antibiotics. He is not a very "happy camper" about being in the hospital this time. Hopefully, if his counts are back up he will be able to go back to the Ronald McDonald house sometime today!
The next round of chemo is still scheduled to begin on July 8th. He will have an ekg and kidney test to see how the chemo treatments have effected his heart/kidneys. Please pray that this will be Addison's final treatment and that the tumor has shrunk enough for the Dr.'s to perform surgery.
Ashley and Austin have been involved in a Bible Camp at the church near the hospital. The camp had a circus theme and they enjoyed being around some other children all week.
Again, our most heartfelt thank-you for all of your prayers and good wishes for Addison. Please remember to sign the guestbook when you visit this site.
BENEFIT INFORMATION:
SPAGHETTI DINNER/SILENT AUCTION/CHINESE RAFFLE
HIBBING VFW POST 7510
WEDNESDAY, JULY 10
4:00-7:00 P.M.
TICKETS $6.00
Friday, June 21, 2002 at 08:56 PM (CDT)
Hello everyone. Thank you for checking in on Addison.
Addison finished his most recent chemo treatment on Tuesday at 5:00 a.m. He was released from the hospital that afternoon for a few days at the Ronald McDonald House. He has been doing well....playing, sleeping good at night. However, today, he is slowing down which means that his blood counts are dropping (normal after a chemo treatment). Most likely he will be readmitted to the hospital on Monday for a transfusion if his counts drop to zero and/or temperature goes up.
Addison's next (and hopefully last) round of chemo will begin on July 8. When that is completed they will do another scan to see if the tumor has shrunk. Please pray for this miracle so the Dr.'s can perform surgery.
Ashley and Austin are attending the summer program that the Ronald McDonald House provides. They have activities two times per week. This week they attended the Scooby Doo movie and went to a waterpark in Edina.
Again, our heartfelt thanks for everyone's prayers and support!
Friday, June 14, 2002 at 12:44 PM (CDT)
Addison had a good week at the Ronald McDonald House. In fact, on Wednesday, he was doing so well, he got the "OK" from the Dr.'s to take a trip to Como Zoo!
On Thursday, Addison was admitted to the hospital to prepare for his next chemo treatment. He underwest surgery in the morning Hickman line put in and also had a sinus flush and culture as he has been suffering with sinusitis the past few weeks. The surgery went well with no surprises. He was in some pain last night, but that has subsided today.
Addison began another 96 hour chemo treatment at midnight last night. He is doing well so far today and even took a little walk this morning.
Thanks again to all for your prayers and good wishes. Please sign the guestbook when you visit!
BENEFIT INFO:
SPAGHETTI DINNER/SILENT AUCTION/CHINESE RAFFLE
HIBBING VFW POST 7510
WEDNESDAY, JULY 10
4:00-7:00 P.M.
TICKETS $6.00
Monday, June 10, 2002 at 02:47 PM (CDT)
Things have been very busy the last few days. On Friday, June 7 Addison was released from the hospital and our entire family is now at the Ronald McDonald House. It has been wonderful all be together. Addison has been enjoying playing with his sister and brother and getting out and about a bit, but is not able to go into public places at this time.
We will be at the Ronald McDonald House until Thursday morning, at which time Addison is scheduled for surgery to put in the Hickman line to prepare him for his next chemo treatment which will begin Thursday pm. Again, this will be a 96 hour treatment. Tomorrow we will meet with an Ear/Nose/Throat Specialist, and it is possible that they may do sinus surgery on Thursday as well.
Addison's alpha feta protein levels are now at 24,000. When he was admitted to the hospital they were over 2,000,000. A normal alpha feta protein level is 100. We have a way to go but have made much progress.
Will post an update after surgery. Please pray for Addison's surgery to go well on Thursday.
BENEFIT INFORMATION:
SPAGHETTI FEED/SILENT AUCTION/CHINESE RAFFLE
DATE: WEDNESDAY, JULY 10, 2002
TIME: 4:00-7:00 P.M.
PLACE: VFW 8510, HIBBING, MN
TICKETS $6.00 (AVAILABLE BOTH IN ADVANCE AND AT THE DOOR)
FOR FURTHER INFO CONTACT:
Jason Schwartz
218-262-6116 or 218-262-3718
jasons@dom-ex.com
Tuesday, June 04, 2002 at 12:45 PM (CDT)
Addison has been in extremely good spirits the last couple of days. In fact he actually ate a meal of cheeseburger, chips, and grapes yesterday. This is the first actual meal he has eaten since hospitalization. Addison has been out and about for stroller rides more in the last three days than he has been in the previous six weeks.
As expected, Addison's blood count has dropped which is normal after chemo treatment. Because of this, he was not able to go home to the Ronald Mcdonald House due to the risk of a bacterial or viral infection. Addison has seemed to experience less pain the last few days also.
Addison's next cycle of chemo is scheduled in one week. Most likely, the Dr.'s will do another cat scan after this round of treatment to determine if the tumor has decreased in size.
CHECK OUT THE NEW PHOTOS!
Another benefit has been scheduled to help defray expenses. See details below.
Again, our warmest thanks and appreciation to everyone for their thoughts and prayers!
ADDISON TOIVOLA BENEFIT INFORMATION:
SPAGHETTI FEED/SILENT AUCTION/CHINESE RAFFLE
DATE: WEDNESDAY, JULY 10, 2002
TIME: 4:00 PM - 7:00 PM
PLACE: VFW 8510 - HIBBING, MINNESOTA
TICKETS: $6.00 (AVAILABLE BOTH IN ADVANCE
AND AT THE DOOR)
FOR FURTHER INFO CONTACT:
Jason Schwartz
218-262-6116 or 218-262-3718
e-mail: jasons@dom-ex.com
Friday, May 31, 2002 at 09:29 AM (CDT)
UPDATE:
Addison has been running a temp the last couple of days. At this point it does not look like he will be able to leave the hospital for the weekend.
He will have a CT scan this a.m. to see if his sinus' are infected and that is the reason for his fever. At any rate he has been in isolation due to this fever.
On a brighter note, Addison had a special visit from BATMAN aka Ross Perko the other day. Will post a picture of this special event soon!
Thanks to everyone who has visited us, sent cards & gifts, and for all of your prayers.
TO VIEW ADDISON'S STORY, CLICK ON HISTORY (MAY 19 JOURNAL ENTRY).
Wednesday, May 29, 2002 at 04:30 PM (CDT)
UPDATE:
Addison has completed his 96 hour chemo treatment. He has responded well to his therapy and is doing as well as we can expect. His spirits have been up despite the fact that the Dr.'s have reduced his pain med and his blood counts and platelet counts have dropped significantly.
The goal for this week is to wean Addison from his pain medication so that he will be able to leave the hospital for a short stay at the Ronald McDonald House. We are hoping to do this on Friday, May 31 if all goes well. It will be a nice break from the hospital for all of us!
Our lives have been drastically changed by Addison's illness, but the kindness we have experienced from everyone back home, the staff at the hospital and Ronald McDonald House, have given us so much hope for a successful recovery for our baby. Our hearts are filled with gratitude for all of you!
Wednesday, May 22, 2002 at 10:55 AM (CDT)
Thanks to all of you for checking Addison's web page and for the wonderful words of encouragement you have left on the guestbook. We are overwhelmed by the amount of support we have been shown with the fundraising efforts that have taken place. No words of thanks would ever be enough to express how much we appreciate everything that being done to help our family during this difficult time.
Last night Addison began his 2nd round of chemo therapy. This was a four hour treatment. They are now giving him an "electrolite" flush which replenishes his system/organs.
At midnight tonight, Addison will begin another round of chemo therapy which last for 96 hours. While this is the longest round of treament he has been given yet, they will be giving him electrocardiograms each day, blood work every four hours and he will receiving daily testing of his organs. The Dr.'s here leave no stone unturned. The level of care we are receiving is just awesome.
Today, for the first time in five weeks, Addison was able to walk around the 5th floor. We have been pushing him around in the stroller, but today he literally got up and walked!
Also, an update on Addison's fever. After almost four weeks of a 102-105 fever, today he is at a normal 98.6. This is very good news for us, however we are still taking one day at a time.
Please keep praying for our miracle!
TO READ ADDISON'S STORY, CLICK ON PAST JOURNAL ENTRY!
Sunday, May 19, 2002 at 12:41 PM (CDT)
ADDISON'S STORY:
Friday, April 12, 2002 was the beginning of a world of change for the Toivola family. A lump was discovered during Addison's three-year-old well child check-up. Dr. Kelly ordered a scan and on Tuesday, April 16, David and Debbie were told the worse possible news. They recieved the diagnosis that Addison did indeed have Hepatoblastoma, which is a rare form of liver cancer which strikes only one in a million children aged three and under.
On Thursday, April 18, Addison was transported to Minneapolis to begin chemotherapy treatment at Fairview University Children's Hospital. Addison will undergo 12 weeks of treatment before physicians can do surgery. Following surgery to remove the tumor, Addison will undergo a bone marrow transplant. The chemotherapy treatment up to this point seems to be successful as the tumor is shrinking in size.
While Addison is hospitalized, the Toivola family is residing at the Ronald McDonald House, located near the hospital.
Two fundraising events have been planned to cover the medical and living expenses of Addison and his family. On Friday, May 17, a Spaghetti Dinner was held in which approximately 1,000 guests were served. Tonight, Sunday, May 19, a Bingo Fundraiser will be held beginning at 6:00 p.m. at St. Joseph's Catholic Church.
The Toivola family expresses their most sincere thank-you for the thoughts and prayers of everyone and encourage you to sign Addison's guestbook (click on the button located to the left of this page).
Please watch for future updates about Addison's progress!
Sunday, May 19, 2002 at 12:00 p.m.(CDT)
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