Journal History

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Thursday, May 30, 2013 3:48 PM CDT

Happy Birthday to my beautiful courageous loving son Mason.
Today he would have been 16. To all that loved him and
were inspired by him he is, in our eyes, “Forever 6”. Seeing his friends driving and dating now is so very hard. I know he would have still been best friends with Jonathon, still have his beautiful curly hair and he would be deciding on where he would go on to school to be a Veterinarian. We will be together again – what a glorious day that will be!


We love and miss you Mason,

Mom, Zach and Adam

Thursday, August 30, 2012 5:44PM CDT

Thanks for visiting Mason’s caringbridge site. I know not too many stop in anymore.

August 30th, 2003 certainly wasn’t hot today is. I was just talking to someone today about that day – 9 years ago.
I can vividly remember the shade of blue the sky was and the crisp feel of the air that morning. Mason flew up to heaven at 7:07 AM that morning. He was surrounded by my wonderful family who moved in with us during the last month. What a blessing to have my family near us.

A couple weeks ago, a young man came to our door selling cookies for the Watertown Football team. I asked him what grade he was in, he said he was going to be a sophomore. I told him my son Mason would have been a sophomore as well this year. He said, “I knew Mason, he was a nice kid”. I watched him walk away trying to picture how Mason would look and thinking he would have been selling cookies too because he loved to play football and especially loved to play baseball.

Adam texted me from school yesterday (he is attending Central Lakes College, his first year!) – “It’s the day before Mason’s day”. I was surprised he remembered. I hadn’t mentioned anything especially since it was his first week of classes. I texted him back and said “Mason is so proud of you”. They were extremely close. Adam hasn’t talked much about Mason throughout the years. I used to bring up Mason’s name often – talking a lot about memories of all three boys. Zach and Adam would ask me not to talk about him so much - . It’s apparent that Adam wants to hear more about him now for some reason. I recently had some video tapes put on DVD of Mason – his Make-A-Wish trip, his time in the hospital, birthday party, the funeral, etc. I will keep them close by for when I think it’s an appropriate time to watch them. I think watching them would be healing for them.

Thanks again for stopping in.

Blessings and love,
Sandy

Wednesday, May 30, 2012 4:45 AM CDT

Wow, today Mason would have been 15. He would have been getting excited about getting his drivers permit,
finishing his first year of high school, finding a job for the summer, hanging with his buddies and just enjoying the summer. Instead, I know he has been enjoying being with his Godmother/Aunt Joanne in heaven. She was called to be with the Lord on February 14th (a day before her 70th birthday). They had so much fun together especially in the hospital. Joanne and Jim helped us a lot. I couldn’t have done it without them. We sure do miss her; but, she was suffering and it was time. Her beloved husband, Mason’s Godfather and permanent 6 year old buddy Jim is thought of by us all every day. Oh how Jim and Joanne cherished one another.

We love and miss you Mason. Can’t wait to be with you again! Enjoy another birthday in heaven!

Tuesday, August 30, 2011 5:45PM CDT

Eight years ago today Mason left us to be with Jesus! That day seems like yesterday in a way it also seems like more than 8 years. The weather wasn’t like it is today. It was a beautiful sunny morning. I ran across many old pictures of the 3 boys the other day – mostly from the 2 years in and out of the hospital. There were quite a few of Zach and Adam the first day of school at Risen Christ in Minneapolis when we lived near the year after Mason’s first BMT. They were so cute – they had to wear uniforms and their hair was almost shaved. I love those pictures!

Each year on August 30th is really hard. It doesn’t ever get easier – just different. That is the only way I can put it. I still try to avoid running in to Mason’s friends. Sounds terrible but it puts me in a really hard place for days when I see how grown up they are. They are entering in to high school this year – 9th grade – FRESHMAN in HIGH SCHOOL! How can that be? 2015 I anticipate will be the hardest. They will be seniors. Today, I know Mason would be practicing football and still hanging out with Jonathon. Oh how our lives would be different if he were still here with us.

I have a group of people (most whom are professionals ) whom I have become friends with and together we are passionate about health concerns regarding EMF/RF. One is Olle from Stockholm Sweden. He is a professor at the Institute of Karolinska. I told him a fond memory I have of Mason exactly 8 years ago today was holding an ANGEL. His response was “now Mason is holding me”. That gives me comfort.

We love you Mason! Knowing that we will be together again soon keeps me going!


You are in our hearts.

Mom

Friday, May 27, 2011 5:45PM CDT

Happy 14th Birthday Mason!!!!

Wow, 14!

I was cutting your brother Adam’s hair the other day and immediately thought about you and your beautiful curly hair. Adam’s hair is just like yours but dark. I think you would have looked a lot like Adam but not as tall. Did you know he is 6’ 3” already? I am kinda hoping he stops growing up. He is taller than Zach. Zach has quite the muscles. He works out a lot. I know you two would have worked out together. Oh we miss you so very very much! Adam wrote an essay about you for his American Lit class. He did very well. The title was “Playful and Courageous, My brother Mason filled our hearts with love”. Joanne chose that saying for your Celebration in to heaven – so fitting for you.

Fr. Ed may be joining you soon. He went to the doctor for an angioplasty. His arteries are clogged and they want to do open heart surgery. So far, he has elected not to have the surgery. What a wonderful life he has had. We are so lucky to have been part of his life. I hope he is with us for a while yet. If not, he will be with you.

Have yet another wonderful birthday in heaven.

Love,
Mom

Friday, October 29, 2010 10:06 AM CDT

Happy Halloween Mason!

This is one of your most favorite times of the year. I often look at the pictures we took at your Halloween party August 17th, 2003. Everyone had such a great time. What a great idea you had! We still talk about it. I know you probably wouldn’t be trick or treating (at the age of 13) if you were here but I know you would still want to dress up, hang out with your friends and celebrate. I’m going to bring you a pumpkin tomorrow at the cemetery in Glencoe.

I still have my “Mason days” when I miss you so much. Those days will go on forever. Afterall, you were “my rock”. Kevin is now the person I lean on to get me through many hard times. I am so lucky to have him in my life. You would really like him. He was is a pro fisherman – walleyes mostly. I have told him stories about you and your love for fishing.

I know God will bring us together again someday. I think of that day often. Until then, my time here is to be spent trying to guide your brothers. It is not an easy task but with God’s help, I believe your brothers will be OK. If you can help in any way, please do. I wish I could be in their lives more.

I miss the love and laughter you and I shared.

I love you from here to the moon and back Mason!

Mom

Monday, August 30, 2010 5:20 AM CDT

Thanks for checking Mason’s Caringbridge site after all these years. 7 years ago today Mason went to be with the Lord. He definitely is the lucky one. He is free from all the evil and pain we endure in this world. I miss him so much! I would not have the Love for the Lord as I do if I hadn’t gone through the death of a child. My faith continues to be tested though. Recently Zach (my oldest) has experienced something life changing. I can not go in to detail right now but please prayer for him and for me to keep strong for him.

Without my friends, family and my significant other (Kevin, who has been a wonderful support), I don’t know if I could get through many days.

Love and blessings to all of you,
Angel Mason’s Mom (As Angel Aaron’s Mom would say)

Friday, May 28, 2010

Greetings Everyone and Happy 13th Birthday Mason!

More hard days coming up but also a big milestone for Mason’s big brother. Zach graduates tonight from Watertown-Mayer High School. I am very proud of him and I know Mason is too! Mason’s birthday is on Sunday (May 30th). Wow, he would have been 13! This week I was over to Mason’s best friend’s house. I had not seen Jonathon for a long time. He is so grown up and a teenager himself. I couldn’t help but wonder how awesome things would have been if Mason were still here and hangin’ with Jonathon. They had so much fun together the 2 years they were together – inseparable!

Graduation night is happy but also sad for Zach and his classmates without Aaron, not to mention my dear dear friend Colleen (Aaron’s mom). Aaron should be up there tonight with the class of 2010!! Mason would have been the class of 2015, in 5 years!!! That will be a hard year too. Great friends and family are what get us through those tough times. So, thank you everyone for your prayers and support.


This year I started the Mason Jergens Scholarship. My good friend Colleen (Aaron’s mom) suggested it and helped me. I thought it was appropriate since Zach graduates this year. Funny who the recipient was – Mitch Fashing, the 1st cousin (also a friend of my son Zach) of a little girl that we met at the U during Mason’s first BMT. They live a few miles from us. Zach was a little afraid to donate his marrow so the social worker set up a meeting with him and the brother of this little girl. The brother had already gone through donating of his marrow. He told Zach (my oldest son) that it wasn’t painful. I didn’t even know this young man was applying for the scholarship. I believe it was a God thing.

Love and blessings,
Sandy

Saturday, August 29, 2009 9:46 PM CDT

It’s the eve of Mason’s death and I can honestly say that it’s still very hard even after 6 years. Those who have lost a child can relate and those who have not ? Either they try and have some empathy or don’t care to and aren’t there for us. I don’t know how many people still visit Mason’s caring bridge site but those who continue to - thank you. I don’t update often but you will find I will write something on his birthday and the anniversary of his passing or as I like to say - his anniversary to heaven.

I know many of you may think - it’s been 6 years, why can’t she just get on with life or move on. Every day is still hard. I want to tell you all that I will not be able to “move on” or “get over it”. It’s amazing that only a few people in my life understand that. I surround myself with those people. It just makes my everyday life easier that way. I am so grateful for those select few people who understand. Every year that passes I see Mason’s friends get a year older. That I can say is THE hardest thing! I can not avoid it. I see their pictures in the paper, see them at sporting events, in the grocery store or just hanging out together. At the age of 6 Mason was very mature, wise and caring for his age. Many will attest to that. I think God made him that way because He knew He was going to take him at a young age.

Tonight I am thinking a lot about the morning he passed - 7:07 am Aug. 30th. My wonderful family was there with Zach, Adam and me. Mason and I were sleeping on the bottom bunk bed while Adam was above us. My other family members with in the other bedrooms of the house. I lay next to Mason while he breathed his last. I announced it when Adam screeched. I will NEVER forget that screech! To this day, Adam has not talked about Mason’s passing. I wish the boys talked about that day. I wish they brought up Mason’s name. I long to hear his name!!! I long to be with him! I will some day. I pray that my boys will be with us in eternity as well. I feel that is my calling. Please pray for my boys.

Thank you for your continued support.

Blessings,
Angel Mason’s mom (Sandy)

Saturday, May 30, 2009 9:22 PM CDT

HAPPY 12TH BIRTHDAY MASON!!!!!!!!!!!!!

WE MADE A CAKE FOR YOU TODAY MASON - YOUR FAVORITE CHOCOLATE WITH CHOCOLATE FROSTING MINUS THE GUMMY WORMS. I TOLD YOUR BROTHERS SOME STORIES TODAY. SOME THEY DIDN'T REMEMBER. I ALSO TOLD THEM HOW MUCH YOU LOVE/LOVED THEM. THEY LOVE YOU TOO, SO MUCH!!!!!!! I HOPE YOU ARE TAKING NOTES EVERY BIRTHDAY I HAVE MISSED. I WANT TO KNOW WHAT YOU DID ON EVERY ONE. EACH MORNING I WAKE UP I TELL MYSELF IT'S ONE DAY CLOSER TO BEING WITH YOU. THAT DAY CAN NOT COME SOON ENOUGH. I MISS YOU SO MUCH!!!!!!!!! THIS BIRTHDAY AARON IS WITH YOU. AARON'S MOM AND I WENT FOR A WALK TODAY. COLLEEN HAS BE SUCH A GREAT FRIEND. WE CAN PICTURE YOU AND AARON GREAT FRIENDS IN HEAVEN AS WELL. ENJOY YOUR SPECIAL DAY. WE CAN'T WAIT TO BE WITH YOU AGAIN.

LOVE,
MOM,ZACH AND ADAM

Friday, September 26, 2008 8:02 PM CDT

I know this site isn’t visited as much any more but those who continue to stop in – thank you for your continued support and prayers. Currently, there is a local family that is in desperate need of your prayers. My little community (Watertown) has had our share of tragedies lately. A good friend of Zach’s was killed in a car accident mid July (his mom is a good friend of mine also). Aaron was only 16, a wonderful young man, great friend, athlete, scholar, brother and son to Colleen and Mark Kelzer. The entire town especially the 11th grade class is grieving. A month later another 16 year old boy got killed in a car accident and his friend is currently in a coma at HCMC – Brett Hansen Begg

www.caringbridge.com/visit/bretthansenbegg

Brett has an amazing family that is staying strong and going through the “one day at a time” journey I so vividly remember when we were in the hospital for months at a time. They have a lot of support and many people are praying for them but one can ever have too many prayers or support. So, please keep them in your prayers.

Blessings,
Sandy

Friday, August 29, 2008 3:40 PM CDT

Tomorrow marks 5 years. It seems like Mason has been gone longer than 5 years! It seems forever since I held him, heard him, read to him, made him pizza, played Sorry with him, laughed with him, etc, etc. I will never forget the day (about 2 weeks after he passed away) when I could no longer smell his scent on his life-sized Scooby Doo that I slept with every night. It still makes me cry to think
about that day! Now I have to wait until God tells me it’s my turn to join them in heaven. Honestly, that day will not come soon enough!

The other day Zach and I were discussing body types. Zach has been working on a farm all summer. His job is very physical and he works both morning chores and evening chores. Since working on the farm he has developed quite the muscles. He said to me, “if Mason were still here, he’d be one tough dude”. I believe he would be too. Mason was always very strong. Even the day we had the Halloween party for him on August 17th (13 days before he passed away). We all remember how hard he hit that pinata. The 45 people there were all amazed at his strength.

Yesterday, in our local newspaper I wrote the following Letter to the Editor:

On September 5th @ 6 pm our time America should tune to NBC, ABC or CBS. Collectively and FINALLYpeople will be coming together to "Stand Up To Cancer".

Seems as though each day we hear of someone else getting cancer. It is more prevalent as years go by.And, so are questions as to why people are getting cancer. I pray that our communities may some day see that hope we have had for years finally turn in to relief, especially for the children.

As a bereaved parent (my son passed away of cancer almost 5 years ago), I have become more aware of our country's possible environmental dangers even those in our local area. I believe, as parents, it is our duty to protect our children. This fundraiser may be the ticket to finding out the culprit(s) (cancer-causing dangers).



I know in our little community the percentage of people with cancer/those passed away from cancer seems higher than other areas. As parents and people who care for each other, we need to get answers as to "why us?".



So, my hope is that many people will tune in September 5th and support this mission. We need to let our government representatives aware of our concerns. For those who are as concerned as I am – let your voice be heard, email Norm Coleman or Amy Klobuchar.


Thank you everyone in my life who bring up Mason - his name and stories about him. You all don't know how much it means to me. I need to hear his name and know he is not forgotten.

God Bless,
Sandy

Friday, May 30, 2008 5:22 PM CDT

Happy 11th birthday Mason!

The pain and struggles are still an every day occurrence without you here with us. You are constantly on my mind. I know I am being selfish feeling like this because you are free, happy and without any pain or unhappiness.

I hope you enjoyed your special day in heaven with Jesus, Grandpa Gene, Grandma Dorothy, cousin Angel, cousin Troy. I wonder, do you guys take pictures in heaven? If so, you’ll have to show me all I missed the years we are apart. Are there years in heaven? All deep complicated questions! We can only wonder. I often wonder when will that day be when we are reunited again! That happy thought keeps me going every day! I miss you so much!


Hugs and kisses to you Mason. Thank you for all your love and happiness you gave me for 6 years!

Mom.

Friday, May 9, 2008 7:58 PM CDT

Dandelions From Heaven


Mothers Day is coming...and I wanted to send you a sign...
Something you can tell others..."Is from an angel of mine".
So I searched the Heavens high and low for that perfect thing.
And low and behold I found it....and a smile I hope it will bring.


So when you look to the Heavens...and see the yellow stars in the sky...
Just think of me...your angel... in the Heavens way up high...
And just imagine those stars...are dandelions up above...
Yes! Dandelions are also in Heaven...,which you know how much I love.


So on this Mothers Day... when you awake and feel blue...
You will notice those yellow stars...are no longer in view...
So just look to the meadows and the dandelions you see....
Are the ones I've tossed down this Mothers Day from me!


And when you find a dandelion that has turned from yellow to white...
You're supposed to make a wish...and then blow with all your might.
For you will be blowing kisses... to me in Heaven above....
And I will be catching them and blowing them back...sent with all my love.


Please know that I am with you...on this Mothers Day...
And also in the days ahead...God and I will never stray...
We will be with you in the morning...when you wake and see the sun..
We will be with you when you say your prayers...when the day is done.


For God and I will never be...very far from your side...
For I can now be everywhere...and God will be your guide...
So...remember when you see dandelions...its your guarantee...
That I am alway close to you....
For dandelions are free to roam.....now just like me.


I will always be with you Mom....
Happy Mothers Day
Love, Your Angel in Heaven.

Monday, December 24, 2007 6:28 PM CST

Merry Christmas everyone,

For all those who continue to check in with us - Thank you so much!

The boys and I are leaving for California in the morning - December 25th for 8 days. We are going to visit my dearest cousin Diane and her husband Ken. Diane stayed with Mason and me at Children's for quite some time after he relapsed the 1st time. She helped me through so much! Last February she lost her only son in a car accident. Troy was 26 years old. She is doing fairly well but as all of us bereaved parents know - it's "day by day" I miss them so much and look forward to spending time with them. We will spend 4 days with them then drive down to San Diego for the remaining of the trip. The boys are very excited!

God bless!

Wednesday, November 21, 2007 6.05 PM CST

November 30, 2007 Update:

Please pray for McKenna's family. Jesus welcomed her into His Kingdom Wednesday. She is such a beautiful little girl - only 10. Her family is struggling with her loss right now. Pray for them!
www.caringbridge.com/mn/mckenna

Happy Thanksgiving everyone! May you all enjoy being with family and count your blessings.
God is good and He gives is more than we deserve. It’s funny how I have this attitude when my life is
at the lowest it’s ever been. The only way I can explain it is God has carried me on His shoulder and He gets me through the days. There is no other explanation. I rarely see my boys even though I have full custody of Adam. Over the Summer this change has occurred. There are more troubling issues too but I won’t get in to them. Please continue to pray for my boys. I have given it to God. And I know we will be OK but there will continue to be “bumps in the road”. Also please pray for all the cancer kids. There is a little gal from the Watertown area (Emily Hanson) who has AML leukemia - www.caringbridge.com/visit/emilyhanson She is doing really well at Children’s so far but needs your prayers.
Sounds like a similar protocol that we went through so it’s a long journey. Also, since I last updated
there has been a few that have earned their wings:

www.caringbridge.com/visit/evancousineau
www.caringbridge.com/visit/mckenziebowman
www.caringbridge.org/visit/dallashawkins
www.caringbridge.org/visit/seanjoyce

Please don't tell me you know how I feel,
Unless you have lost your child too,
Please don't tell me my broken heart will heal,
Because that is just not true,
Please don't tell me my son is in a better place,
Though it is true, I want him here with me,
Don't tell me someday I'll hear his voice, see his face,
Beyond today I cannot see,
Don't tell me it is time to move on,
Because I cannot,
Don't tell me to face the fact he is gone,
Because denial is something I can't stop,
Don't tell me to be thankful for the time I had,
Because I wanted more,
Don't tell me when I am my old self you will be glad,
I'll never be as I was before,
What you can tell me is you will be here for me,
That you will listen when I talk of my child,
You can share with me my precious memories,
You can even cry with me for a while,
And please don't hesitate to say his name,
Because it is something I long to hear everyday,
Friend please realize that I can never be the same,
But if you stand by me, you may like the new person I become someday-unknown

Thursday, August 30, 2007 1:05 AM CDT

Hi Everyone,

Four years ago today Mason left us for a better place.
I have decided to use Mason’s website mainly for postings of children who need your prayers. Once in a while I may give an update. There is really nothing positive to report.
Life continues to be filled with grief, uncertainty, heartache, and constant trials. I am sorry to sound so negative. The loss of Mason has been that much more difficult now that my boys too seem to be drifting away. Many of you know the story. I will not go in to it but please keep them (Zach and Adam) in your prayers also. I have come to the conclusion that all I can do is turn it over to God. I will leave it at this – at least I know Mason is in a better place - free of any pain, uncertainty, war, etc. Zach and Adam, on the other hand, have influences in their life right now that I and they have no control over. So, along with the following children who need your prayers please pray for mine also.

www.caringbridge.com/mn/mckenna
www.caringbridge.com/mn/rosie
www.caringbridge.com/mn/joeybrunner
www.caringbridge.com/mn/noahhurley
www.caringbridge.com/visit/jakebeckstrom
www.caringbridge.com/visit/chasebanken
www.caringbridge.org/visit/sierraturner
www.caringbridge.org/visit/joshscanlon
www.caringbridge.org/visit/lukewilliams
www.caringbridge.com/mn/laplafcan
www.caringbridge.org/visit/oliviachiappetta
www.caringbridge.org/visit/kaitlynschwartz
www.caringbridge.org/me/jacob
www.caringbridge.com/wi/bionicjakester
www.caringbridge.org/ky/presleynash

God bless,
Sandy

May 30, 2007 5:22 am CDT

Happy Birthday Mason,

Hard to believe today you would have been 10 years old! I wonder what you would look like, would you still have your curly hair that so many envied?, what your favorite subject would be in school?, who your first crush would be on – maybe Natalie Neumann or Sophie Luoma?, I know Jonathon would still be your best friend. He misses you a lot, you know that? There are many of us who miss you!!! Seeing your friends around town seems to be the hardest. Jimmy once told me that he had never been close to a child like he was with you. . I have been reading a lot about heaven. Recently Troy and Ruby joined you in heaven. Greet them for me! I bet you are having a lot of good times in heaven. I can’t wait for you to show me around there. Maybe YOU can tell ME stories about Jesus like I used to tell you stories about Scooby-Doo. You must be so wise and knowledgeable about Jesus. You always had a love for Jesus. I know you don’t want me to cry anymore for you but there is such a huge void in my life without you! I want to move forward (especially for your brothers) but it is so so hard!
Sister Miriam recently told me to pray TO you and ask you for help with your brothers and this grief thing. As you know, you and I were inseparable since the day you were born. Whenever I needed a hug you were there for me. You even knew without any indication when I needed your hugs. Thank you for the recent signs. You came to us at Jim and Joanne while we were having mass – two deer at the picture window at the edge of the valley. It was you and Cousin Angel. Mel said you came by in the form of a butterfly twice this month. Keep sending us the signs. This assures me that you are OK. I know you are but the signs are a reassurance. Are you having a party there too? Zach and Adam and I are going to the cemetery in Glencoe today. This will be the first time we will see the stone I made you in the ground. I hope you like the Scooby- Doo I put on there. Thank you Mason, for touching so many people during your 6 years with us. Enjoy your 10th birthday party in heaven. How is the fishing in heaven? I bet you and Grandpa Gene do a lot of fishing together.

We miss you and love you!
Mom, Zach and Adam

Wednesday, March 14, 2007 11:45PM CDT

It’s been a very long time since my last update – before Thanksgiving sometime. I haven’t been in the mood to write. The boys and I celebrated our 4th Christmas without Mason. We enjoyed being with Fr Ed, Jim, Joanne, Janice, Enrique, Marco and Christina. Joanne continues to do pretty well. She is so remarkable. Jim takes great care of her.

My good friend and old roommate from St. Ben’s, Joy Kamano recently sent me 2 pictures of Mason I hadn’t seen before. In 2002, Joy, her boys and Mary Barrett (another roommate from college), Mason & I all met at the Rain Forest Café at the Mall of America. He looked so healthy and happy. Thank you Joy for sending those pictures! You are one of a few friends that continues to talk about Mason. I need that!

Just last week my good friend Janice Vouk sent me a photocopied sheet Jonathon (her son and Mason’s best friend) filled out in religion class. He was asked to name a good friend that has made an impact in his life. He wrote “Mason”. Jonathon and Mason had a special friendship.

Over the last few weeks I have seen two mothers very close to me go through the pain of losing a child. My cousin Diane Dostal Binder (from California) lost her son Troy (26) after he was in a terrible car accident and on life support for almost a week. Mason and I were blessed to have Diane stay with us off and on at Children’s the second time we were there. She came from CA to help. I was so glad both Diane and Mason got to know each other. And, Linda Donovan from Delano. Her daughter Ruby had Tuberous Sclerosis since birth. Ruby was 16. Her funeral is tomorrow. Linda and Karen put on the first benefit for Mason at Rivers Edge. Mason loved going to Linda’s restaurant for breakfast and eating her famous french toast. Please pray for Diane and Linda and their families.

Zach and Adam have been enjoying the warmer weather. They only have 1 quarter left of school this year. This is the time of year that is so difficult for them to stay focused -when the weather is finally nice enough to be outside. The boys are at those "teenage years" - hard to believe! I wish they would stay little/younger longer.


Happy Spring/Easter,
Love,
Sandy

Friday, November 24, 2006 9:22 PM CST

Happy Thanksgiving!

The boys and I just got back from Mankato. We spent a couple days with my sister and her family, Jim and Joanne and Fr. Ed. We had a wonderful time playing games and just being together. When I leave my family I always thank God for all of them. I am very fortunate to have such a great family. Joanne looks great and seems to be doing well. How can she not with Jim taking such great care of her. Being down by the valley - one of Mason’s favorite places brought back memories.

This week is always hard. Mason relapsed the day after Thanksgiving. Those days are embedded in my mind - the look on Dr. Steve's face, Mason telling me, "don't cry mom", collapsing in the hallway at Children's, Mason's unbelievable courage and his strength that held me together. Some days I think if he was here I'd be more "together". Of course this grief thing continues to be hard EVERY day! Mason was incredibly inspiring, loving, caring, fearless, spiritual, etc, etc, etc. I know, I am his mother (proud to be, of course) - I would say those things about my child. For those who knew Mason, you know this is ALL so true. He was an exceptional child. Is that why God took him? We need more of those people here on earth to make the world happier, healthier and more peaceful. Why Mason? Why Mason?

Love and peace to you all!
Sandy

Friday, November 3, 2006 6:22 PM CST

My journal entry is two-fold.

I know how wonderful all of you were when prayer was needed for Mason and our family. Well, there is another family that needs everyone's prayers. A dear friend from Master Craft Labels lost her brother. He was only 43 and had 12 children. His wife is left with a lot of uncertainties and the kids and she miss him terribly. They could all use your prayers. Please pray for Pauline Kerber and her 12 children.

Secondly, as you all know Election Day is coming up. Like everyone else I will be glad to not have to see anymore TV ads or see anymore lawn signs.
My friend Karen and I have become involved in Amy Klobuchar's campaign for various reasons. I firmly believe Amy will make a difference in Washington for Minnesota – tax issues, international security, health care and stabilizing social security (amongst other issues). I don’t intend to change people’s minds or tell anyone who to vote for but I feel like my story should be heard:

About 3 years ago I tried to contact Mr. Kennedy concerning Mason. Mr. Kennedy at the time was my neighbor(less than 1 mile away). The only hope for Mason was an experimental drug which because of his high AST liver reading, he was not allowed to receive (fda requirements). Mason's primary oncologist (Dr. Steve) explained to me that his AST liver reading was not that high and he should be allegeable for this drug anyway. His doctors suggested I contact a representation in my area to get some help contacting the government. Mr. Kennedy did not return my phone calls/emails. I realize Mr. Kennedy may have not been able to do anything for Mason but I expected a returned phone call or email. Mr. Kennedy attends my church and during the month Mason was at home on hospice Fr. Frank kept the congregation updated on Mason condition. He was very aware of the local toddler with cancer.

The area I live has been stricken with unfortunate cases of illness - more than normal (whatever normal may be). Many of us believe the cause of these illnesses is the radiation emitted from a tower near by (cell phone tower/911 tower/radio tower near Hollywood Sports Complex). Mr. Kennedy is aware of this MONSTER in our area but does not seem to want to address the problem. Much research has been performed regarding this tower along with much paperwork and meetings. As you may recall from one of his TV ads, one of Mr. Kennedy’s plans includes protecting wetlands. Well, the tower is IN wetlands (there are cat tails growing around the tower). We are concerned mainly about the young children in our area. There are many towers like this throughout the world. What makes this tower different? Well, for 1 the height. When constructed it was supposed to be higher than it is. Because it is shorter, a higher amount of radiation is emitted and projects out differently because it is shorter.

Thank you for reading this. Whoever wins on November 7th, let’s hope she/he will make good changes and make a difference.

Sandy

Wednesday, September 5, 2006 8:50 PM CDT

I do not need a special day
To bring you to my mind
The days I do not think of you
Are very hard to find.

Each morning when I awake
I know that you are gone
No one knows the heartache
As I try to carry on.

My heart still aches with sadness,
And the secret tears still flow,
What it meant to lose you
No one will ever know.

My thoughts are always with you,
Your place no one can fill,
In life I loved you dearly,
In death I love you still.

There will always be a heartache,
And often a silent tear,
But always a precious memory
Of the days when you were here.

If tears could make a staircase,
And heartaches make a lane,
I’d walk the path to Heaven
And bring you home again.

I hold you close within my heart,
And there you will remain,
To walk with me throughout my life
Until we meet again.

Our family chain is broken now,
And nothing seems the same,
But as God calls us one by one
The chain will link again.
~Author unknown~

Thursday, August 24, 2006 8:59 PMCDT

Hi Everyone!

This summer has gone by so fast! The boys and I have enjoyed the pool more this year than the other 2 summers - especially now when the AC isn’t working. Thank God for the wonderful friends I have who help me when I need it around the house – Darren and Brian and of course their wives Chey and Sharon!! We did get it to work temporarily during the extremely HOT spell.

The swim team finished the season last week. Adam improved so much from the beginning of the season. I am very proud of him. He received more ribbons this year than any other. I wish he would enjoy going to practice and he had good friends on the team but he let me know all season how much he didn’t like it. They start practice @ 7:30 in the morning – that may be 1 reason why he didn’t enjoy it. He will be going out for football this Fall. It’s a sport I enjoy watching but would rather my child not play – if you know what I mean.

Zach also had a good season in baseball. His team went on to the playoffs and got 4th in state. Zach has grown so much over the year. Hard to believe he will be a freshman in high school this year. Adam and I don’t see him that often. I have learned to “let go and let God”.

Recently I received another email from Mason’s buddy from Children’s – Toby. I hadn’t heard from him for a year. He is now is his 2nd year of medical school in Missouri. I opened the pictures before reading his entire e-mail. The short time Mason and Toby had together was special. They had this incredible bond. During one time when Joanne was staying with Mason and I was home with the boys, Joanne recalls Toby walking by Mason’s room, Toby waved and Mason waved back and said, “I have friends here ya know”. He had quite the friend in Toby. Toby and his wife had their first baby – a boy. Toby went on to say in his email that in honor of Mason who meant so much to him and inspired him, they named their son Mason. There are now 2 named after Mason. My cousin Randy’s son Christopher and his wife Whitney asked before their son was born if it would be OK if they named their baby Mason if it was a boy. This is an honor but still nothing will and can fill the void.

August is a really hard month to get through. The warm days, cool nights, getting ready for school, harvesting the garden all remind me of the August 3 years ago. Mason was basically home that entire month. It was 3 years ago this weekend that we had the Halloween party for him. He had such a great time that night. We all did! Oh how I miss him!!!!!

There is a little girl in Watertown who needs our prayers. Please pray for Taylor. She is 11 and has cancer. Her website is: www.caringbridge.com/mn/taylorjaeswansonhoese
Caringbridge has changed a little so you will be taken to the home page and have to type in her name in order to pull up her site. Pam and Al’s restaurant in Watertown had a benefit for her recently and I met her mom, Laure. We cried together and I could sooo feel her pain. They will find out soon if she is cancer free.

Much love to all,
Sandy, Zach and Adam

Monday, May 30 2006 3 AM CDT

Happy 9th Birthday Mason!

We love you and miss you!

Mom, Zach and Adam

Sunday, May 14, 2006 3:04 PM CDT

Sometimes I'm sad. I know not why
My heart is sore and distressed;
It seems the burdens of this world
Have settled on my heart.

And yet I know...I know that God
Who doeth all things right
Will lead me thus to understand
To walk by FAITH...not SIGHT.
And though I may not see the way
He's planned for me to go...
That way seems dark to me just now
But oh, I'm sure He knows!
Today He guides my feeble step
Tomorrow's in His right...
He has asked me to never fear...
But walk by FAITH...not SIGHT.
Some day the mists will roll away,
The sun will shine again.
I'll see the beauty in the flowers
I'll hear the birds refrain.
And then I'll know my Father's hand
Has led the way to light
Because I placed my hands in His
And walked



Happy Mother’s Day everyone! It’s another mother’s day without Mason – the 3rd since he left us, and the 2nd without my mom. I miss them both as much today as I did the day they died. At least mom has Mason up there with her and Janice’s boy Angel. I’m sure they are celebrating the day together.

The boys and I just got back from spending Mother's Day with my family up at St. Ben's. Sr. Miriam had all of us up there for the night/day -Janice and her family, Jim and Joanne, Fr. Ed and my family. We had a great time! It's always fun to go back to St. Ben's and see how the campus has changed. We celebrated all our birthdays/anniversarys too since these last few months have been hard to get together.

Today I am especially remembering all the mom’s that have lost children. Throughout the last 2 years I have gotten to know other bereaved mom’s in support groups and the hospitals/clinics – Heidi W, Trish, Heidi S, Jacqui, Tracy, Cari, Amy, Cathy, Claudia, Tammy, Monica, Pat, Susan and of course my sister Janice. May you all find peace in your hearts and try and remember how wonderful that day will be when we are with them again. Our children will be there with open arms, healthy, happy and ready to show us the paradise they have been living in since they left us.

May is always a hard month to muster through. Mason was diagnosed right after Mother’s day in 2001 and his birthday is the 30th. He would have been 9. I had another breakdown last week. I was picking up Adam at swimming and saw Jonathon. He must have grown a foot since I last saw him. That day Mason was on my mind more heavily than other days so when I saw Jonathon I immediately pictured Mason that height. I need to try and control my emotions. People who didn’t know me must have thought I was crazy. People who did know me knew why I was crying. My dear friends Mike and Bonnie came over to the house after to make sure I was OK. I truly believe that will continue to happen - even 9 years from now when Mason’s friends are seniors in high school.

Love to all,
Sandy,Zach and Adam

Sunday, February 26 2006 11:32 AM CST

Thank you to all of you who continue to check Mason’s website. Some of you think I must be doing better since I don’t update his site often anymore. I guess in a sense I am doing a little better. However, I have my days where I wouldn’t mind just lying in bed. Those days are getting fewer and fewer, but they still exist. The other night I had the most awesome vivid dream of Mason and he was well. I woke up and felt like I had just been with him. In my dream I was holding him. It was so real! He was telling me his “knock knock” and “why did the chicken cross the road?” jokes. His hair was incredibly curling and he was so happy. I am taking that as a sign that he is OK.

I looked back at what we were doing 3 years ago. Mason had just had his 2nd transplant. Reading the journal entries from back then brought back so many memories – both happy and sad. He really was a courageous little guy. He went through so much yet still was able to give his love to others and joke around. I think about those days in the hospital after his 2nd transplant and how they were so hard but I at least had him with me. Now I have to wait to be with him again. I can hardly wait!


Sunday Adam and I went to Mass @ our church. I can't help but think about Mason lying in the casket when we go there. When I’m in the church it always seems like yesterday that we were all there for his funeral. A friend of Mason’s is on Adam’s swim team. The other night I was noticing how tall he is then he smiled and I noticed he had all his adult teeth. Mason never even experienced losing a tooth. Some days the pain is so heavy in my heart and I miss him terribly. Other days I get through OK but a select few days are extremely hard. I can’t figure out the pattern yet.

I recently had a gal contact me about setting up a web page for Mason. She is a Canadian Idol winner. If you have a chance, check it out. I will add it to links on this page. The picture she created is very special. Mason is in the center of Jesus’ hands and below reads “Loyal Lamb Mason”. Thanks again Tanja for doing this!

Like all of you, I am looking forward to Spring. We planted new bulbs in Mason’s garden last year so it will be fun to see those come up. I will be taking a trip to Cabo San Lucas with some friends in a couple weeks - something else to look forward to. It’s a much needed vacation. The last vacation I took was Mason’s Make-A-Wish to Disney World. The boys had a blast!

Happy Easter everyone!

Friday, December 23, 2005 8:10 PM CST

Christmas Thoughts

Beyond the Christmas trees, the angels
and the stars and beloved carols . . .
Beyond the presents, the shopping,
the baking and cooking . . .
Beyond all these sights and sounds
of Christmas . . .
Beyond all of these . . . there is hope.

Hope . . .
For the bereaved parent,
even at Christmas, one of the most,
if not THE most painful times
of the year,
there is an essence of hope.

Hope . . .
It is the hope that someday the pain
of the death of our children
will be eased.
The hope is that once again
we will laugh and love and cry
completely without fear
and hollowness.
It is the hope that someday
we can remember our children
with a tenderness
tinged with sorrow
And not overwhelmed with it.

So it is that for each of you
I would hope . . .
peace, compassion, love,
understanding, sympathy,
sharing and listening.

In the sharing of our grief
with one another,
and in the emotional support,
we give to one another,
we receive and understand
all these gifts.

Author Unknown

Thursday, October 20, 2005 8:14 PM CDT

I found this on a "Day by Day" - it's an online grief support group for bereaved parents. Updating has been hard for me lately. I miss my boy soooooo much and think about him more now than when he first passed. I think I miss him more now because of the struggles I am having with Zach. Mason was always there to offer me a hug when he thought I needed one. And, he always knew when I needed a hug. He was so so amazing. When he first left us, I knew he was free of pain. To see Mason hurt and be in pain was something a parent should NEVER go through. The first year it was a relief to know Mason was not suffering anymore but now I just yearn for his touch/hugs/love. Those hospital days/memories (especially after his second transplant) pop in my mind unexpectedly. I am searching for a way to deal with this. From what I am told by other moms/dads who have lost children, it's an on going struggle.

Give What's Left Of Me Away

Now that I'm gone, remember me
with a smile and laughter.
And if you need to cry,
cry with your brother or sister
Who walks in grief beside you.

And when you need me,
put your arms around anyone
and give to them
what you need to give to me.
There are so many
who need so much.

I want to leave you something.
Something much better
than words or sounds.
Look for me in the people
I've known and loved or helped
in some special way.

Let me live in your heart
as well as your mind.
You can love me most
by letting your love
reach out to our loved ones.
By embracing them
and living in their love.

Love does not die, people do.
So, when all that's left
of me is love,
give me away as best you can.

- Author Unknown

Tuesday, August 30, 2005 11:38 AM CDT

Two years ago today Mason went to be with Jesus. He must know his way around heaven by now. Since then Grandma Dorothy joined him. Every day I wake I know I am a day closer to being with him again. What a glorious day that will be!

Recently I received an email from one of Mason’s best buddies. They only knew each other for a short time but I have to say Toby and Mason were very close – similar to his relationship he had with his godfather Jimmy. Toby was working at Children’s in Mpls the first summer we were there. They did a lot together especially when I wasn’t able to be with him. They’d play foosball, Nintendo, watch movies or just hang out and talk. Joanne often brings up a time when she and Mason were in his room, Toby peeked in his window and Mason immediately said, “I have friends here ya know”. He adored Toby.
Toby’s email was unexpected and very touching. When Mason relapsed those 2 times we went back to Children’s but Toby wasn’t there. He went on to get his nursing degree and is now studying to become a doctor (and a great doctor he will be!). Mason was very disappointed each time we went back to Children’s and Toby wasn’t there. We often wondered where he was. Well, he found us on the web. In his email he said Mason was the subject of many of his medical essays. At the end of his email he said, “a lot of my success has been due to your amazing son”. For some reason I checked my email before going to work one morning, read his email and I must have sat in front of the computer for half an hour crying. I often would think about Toby and where he was. Toby said he thought about Mason thousands of times and it sounded like he didn’t know Mason passed away until he read Mason’s website. During that summer Mason was at Children’s and Toby was there, I took a picture of the two of them playing in the play room – making play-do necklaces. He said he has that picture of them on his desk. I knew Mason inspired many but I guess I didn’t know what a profound difference he made to some people’s lives.

The boys are doing OK. I’m hoping that since Zach will be with me more now I can enroll them both in grief counseling. His father refuses to him talk to anyone. This is so frustrating! Tonight we have school open house. I wish it wasn’t on Mason’s anniversary. I know it’s just another day. I woke up this morning and the weather was exactly like the day he left us – it’s a Mason day today! Of course we will run in to a lot of Mason’s friends and their families at school. You’d think those moments would get better in time. I’m still waiting for that to happen. I can honestly say that for me it isn’t any easier than it was 2 years ago. I look fine on the outside but inside I’m still a mess.

The boys and I placed Mason’s Scooby-doo in his garden last week. That’s the new picture you see on the main page. I know he approves!

We are having a garage sale this weekend (Labor day weekend). Proceeds will go to the Leukemia/Lymphoma Society of MN. Light the Night walk is Sept. 24 this year at Lake Phalen. Our team “Gitt’r Done” will be walking again. Anyone who would like to donate please make checks out to the Leukemia/Lymphoma Society of MN.


Thank you for stopping in. Continue to pray for all the cancer children.

Love,
Sandy, Zach and Adam

Thursday, June 16, 2005 6:01 AM CDT

I have almost finished my grief support group at Children's in Mpls. I have met some amazing moms!
Yesterday we were given some literature to read, I came across this phrase:

We are permitted to grieve because we have been priviledged to love. To escape grief at the cost of never having loved is too dear a price to pay.
- unknown author -

Please continue to pray for all the children stricken with cancer. Also pray for my dear aunt and Mason's godmother, Joanne Ardolf Decker. As many of you know she has ALS. Joanne is doing rather well and amazes her doctors but still needs our prayers - her wonderful husband Jimmy too (Mason's godfather and playmate). Mason was blessed with getting to know them both. What great memories they share!

Thursday, May 26, 2005 2:57 PM CDT

Thanks for checking in with us. I have been debating whether to continue Mason’s website or not. Some Carngbridge friends update every month or so even after their son/daughter has been gone and some stop updating immediately. It’s a personal preference I guess. I have really enjoyed writing – it’s been therapeutic for me. I have made copies of all the journal entries since Mason’s diagnosis so Zach and Adam can read it in the future. As they get older, memories of Mason (how he died, suffered, inspired and loved) will become vague. The messages people left on his site are evidence of how wonderful Mason was. I still ask questions about my dad who died when I was 11. When my dad died I was a little older than Zach and Adam were when Mason died and I still have questions. Going back and reading about the really tough days we went through, (especially at the U- his 2nd transplant and his last days at home with us), is painful to relive but I too find some comfort in rereading those times.

On May 30th, Mason would have been 8 years old. For us bereaved parents, how can we not wonder each year what they would look like, excel in, who their friends would be, what size clothes/shoes they’d be wearing, etc, etc, etc. Pretty much every day I’ll run in to one of Mason’s friends. Just seeing them is so very hard. It will be like this until the day I am reunited with Mason in eternal life. I need to learn how to deal with it

2 years ago Mason had just gotten home and was close to that magic day 100. We had a huge birthday party for his 6th birthday. The picture above is the great group of friends he had to his party. Mrs. Sexton found us the Scooby-doo piñata. Mason was feeling so good that day. Who would have thought then that we only had 3 more months with him.

I want to thank all my wonderful friends and family who continue to bring up Mason’s name. My dear friend Janice (the mom of Mason’s best friend Jonathon) will bring up Mason quite often. Recently she told me a story about how her daughter was concerned about Jonathon after attending a program at school. The kindergarteners always have a choir program and each year they sing the Tootie-Ta song - a song and dance show. The year Mason was in Kindergarten, he was supposed to be on stage with his classmates. He had just gotten the OK to go home after transplant and his ANC was quite low so he had to wear his mask in public places. At the end of the program, he was asked to go up on stage with his classmates. He loved to perform the Tootie-Ta song. Elizabeth must have remembered seeing Mason up there and after the program this year she told her teacher that she was concerned about Jonathon and how he was doing after seeing the program. She obviously had Mason on her mind and thought Jonathon did too. Elizabeth took it hard and Jonathon was OK. She is such a compassionate girl – the entire family is.

The boys and I will go to the cemetery on Monday with balloons, flowers and gifts. Mason’s stone still isn’t completed. I don’t know how I was able to start it over a year ago because I can’t get myself to finish it now. My goal is to have it done before winter so it can be placed in the ground. I have a new sandblaster that can do more detail. It’s just finding the right time to do it.

Love to you all,
Sandy, Adam, Zach and Louie

Wednesday, April 13, 2005 5:22 AM CDT

I found this on another caringbridge site.

Welcome to Holland

I am often asked to describe the experience of raising a child with a
disability (cancer) to try to help people who have not shared that unique experience to
understand it, to imagine how it would feel. It's like this...
When you are going to have a baby, it's like planning a fabulous trip to
Italy. You buy a bunch of guidebooks and make your wonderful plans. The
Coliseum, Michelangelo's David, the gondolas in Venice. You may learn some handy
phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your
bags and off you go. Several hours later, the plane lands. The flight
attendant comes in and says, "Welcome to Holland."
"Holland?!?" you say, "What do you mean Holland? I signed up for Italy! I'm
supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and
there you must stay. The important thing is that they haven't taken you to a
horrible, disgusting, filthy place, full of pestilence, famine and disease.
It's just a different place.
So you must go out and buy new guidebooks. And you must learn a whole new
language. And you will meet a whole new group of people you would have never
met.
It's just a different place. It's slower paced than Italy, less flashy than
Italy. But after you've been there for a while and catch your breath, you
look around and notice that Holland has windmills, Holland has tulips, Holland
even has Rembrandts.
But everyone you know is busy coming and going from Italy, and they're all
bragging about what a wonderful time they had there. And for the rest of your
life, you will say, "Yes, that's where I was supposed to go. That's what I had
planned."
The pain of that will never, ever, ever go away, because the loss of that
dream is a very significant loss. But if you spend your life mourning the fact
that you didn't get to Italy, you may never be free to enjoy the very special,
the very lovely things about Holland.

****Author Unknown****

I had to read this a couple times to really understand the meaning. It is a great analogy.

This warmer weather has sparked great memories of Mason. When we lived down near the hospital on Franklin in the apartment, we would take lots of walks across the Mississippi to go to clinic. Mason and I had great talks, he learned how to spell Mississippi (he could spell it faster than anyone I know) and made-up lots of silly jokes. How I miss those days with him. He knew how to make me laugh and had such an great personality. Man do I miss him!!!!!!!

His 8th birthday is coming up (May 30th). I haven't decided what to do that day. My best friend Lori McGuire and I always get together that weekend. She always cheers me up when we are together. I don't know what I'd do without her.

Enjoy the warmer weather!

Sandy

Friday, March 25, 2005 5:33 AM CST

Happy Easter everyone!

I tried to find one of my favorite pictures of Mason and his godmother Joanne from 2 years ago at Easter but I couldn't. I have it around somewhere. I think I posted it before on the website. Anyway, one of my many fondest memories of Mason was Easter 2003 at Fr. Ed's. The kids and some of us adults were sitting around the table coloring Easter eggs and confetti eggs (a Mexican tradition). Mason was the most eager of them all and was having a wonderful time coloring eggs. At one moment, he set down the last egg he colored and said, "I'm done egging". He was such a joy, had a sense of humor I'll never see in anyone else, filled us with love and inspiration and is missed by so many. I could go on and on about Mason great qualities.

I'm still waiting for the days to get easier. Changes of seasons, certain dates, songs, smells and people I run in to trigger my "Mason moments".

I have started another support group at Children's in Mpls. I am so grateful to Master Craft to allow me to take time off of work to attend this group. It's a 9 week class. This last week before the class I went up to 8th floor hoping to see some nurses, doctors etc. who guided us through 2 years of Mason's battle. Brian, the Chaplain was there and we talked about some of the memories we had with Mason in the hospital. He remembers very well how tough it was to get Mason to take his oral med's. He still gets the award for the best staller on 8th floor. I mentioned to Brian that I was upset with him after Mason's 2nd relaspe because he asked me if I can "hand it over to God". Hearing that made me feel like I wasn't able to do anything to save him. I now realize I wasn't able to do anything and that it was up to God to either take him or save him. God decided to take him. I don't blame Him. What a joy it must be to have him in heaven. But the pain some days is unbearable for us!

Some people think we are "over it". A parent never gets "over" the loss of a child. Being in this support group has been great, in that being with other parents who have lost children, we have all the same experiences/feelings and to hear those same feelings helps me know that I am not crazy - it's normal.


Remember that Jesus died for us. He is the reason for our existence.
Have a great Easter and have fun "egging".


In Christ,
Sandy

Friday, March 4, 2005 4:35 AM CST

Just a quick note to ask you all to consider making a donation to the KS95 kids radiothon:

"KS95 for Kids™" Radiothon
March 4-6, 2005
Call Now 877-253-KIDS

The money raised through KS95 for Kids supports programs and services at Gillette Children's Specialty Healthcare and research through Children's Cancer Research Fund.

Please consider making a pledge.

Under Links below I have included other caringbridge websites. These kids and their families can use your prayers.

Love to all,
Sandy

Thursday, February 3, 2005 6:35PM CST

A dear friend of mine sent this to me. He never met Mason but I have told him a lot about him. Those of you who knew Mason, knew he had a BIG heart, was very loving and generous. I could picture Mason saying this to me:

Dear Mom,

Hi! It's me, Mason! I bet you're surprised to hear from me! I'm writing to you through your friend Kiel. He's a pretty neat guy, and seems to understand what I want to say to you. I'm glad you are friends with him. Actually I had a part in that! I knew you needed a good friend, so I was able to help bring you together. I told you I would look out for you! That is one of the neat things we get to do here... watch and help people we care about.

Let's see... what else should I tell you? I'm sure you want to know what it is like here. I got to tell you mom, it is amazing! It's really hard to explain, and I don't want to spoil the surprise for when you come. But I will tell, you, it is way better than anything you've ever seen there. Maybe like the most beautiful thing you can imagine, and then a whole lot better! It's also neat because every day you discover something new that you didn't know or see before. I'm just starting to get to know my way around, and I'm excited about showing you around when you get to come.

I want to tell you something that doesn't seem right, but it's really pretty funny. Can you guess what it is? Here it is... I don't miss you at all! Now before you get sad, I'll tell you why... it's because I'm with you every day! Ha! Did you guess that is why? I remember when I was sick, and even though you were with me a lot, there were times when you couldn't be, like when I was getting treatments. I used to miss you and cry for you, and want you to hold me. But now, I'm with you all the time, and that's my favorite part about being here. I LOVE YOU MOM!!!

I want you to tell Adam and Zach that I'm doing fine, and tell them not to fight so much! ha I don't know how you do it mom, even with me being here now, I still don't know! ha ha You are such a good mom to them; I love to watch you play with them and talk to them, and give them hugs and kisses. I give you hugs and kisses too... can you feel them? Or maybe you see me in someone's eyes sometimes? I also want to tell you that I'm glad you're letting yourself love again. I'm glad that you have people who care about you very much. It makes me very happy to see that.

I also want to write to you about dad. More than anything I want and need you to pray for him. You can't do a lot for him there, but I can here, and when people pray, it makes things a lot easier. Sometimes, it's the only thing that works. So keep praying for him. I know it is hard and you don't want to or feel like it a lot of times, but that is what he needs the most.

I guess that's about all for now. Always remember that I love you, I'm with you, and I want you to be happy. Laugh every chance you get, and before you know it, you'll be here with me! We'll have a blast, and I'll show you all around, and how everything works here. You are the best mom in the world, and I ought to know! ha ha

I love you mom!

Your son,
Mason


Thanks Kiel for writing this. Even though I cry every time I read it, it helps me picture where Mason is, that he is OK and that I will be with him again soon.

Sandy

Friday, January 28, 2005 5:15 PM CST

The boys are I are doing OK. Recently a good friend of mine gave me information on a mentor program for the boys. Zach and Adam continue to hold in feelings and comments regarding Mason. I, on the other hand, could talk about Mason for hours every day of the week. This is a goal I have for the boys some day-talking about Mason is therapy for me and believe only good would come out of them talking about him too. For quite some time Zach has been living pretty much full time with his dad. Recently, his dad decided the boys need to be together all the time so Zach is back living with Adam and me every other week. Some of you know the whole story behind the divorce and understand how hard I have tried with Zach. I’m not sure if I can continue trying so hard anymore. The whole situation is so very complicated and all I can do is ask God to help us. Mason too promised when he got to heaven he would help.

Last weekend I enjoyed being with many wonder family and friends for my birthday. My sister arranged a 40th surprise party with my wonderful aunts, uncle and cousins. The night before a bunch of my close friends and I enjoyed a limo for the night. What a great feeling to be with so many close friends. I am thankful to God for all of my wonderful family and great friends. 17 months ago I would have never thought my life would be like this. But then again I think how I can go wrong with such a wonderful support team.

I ran across this on another Caringbridge website.




GOD’S LOAN

"I'll lend to you for a little time,
A child of mine," He said,
"For you to love the while he lives
And mourn for when he's dead.

"It may be six or seven years
Or twenty-two or three,
But will you till I call him back,
Take care of him for me?

"He'll bring his charms to gladden you
And should his stay be brief,
You'll have these precious memories
As solace for your grief.

"I cannot promise he will stay
Since all from earth return.
But there are lessons taught down there
I want this child to learn.

"I've looked this world over,
In my search for teachers true.
In the crowds that throng life's land,
I have selected you.

"Now will you give him all your love
Not think the labor vain,
Nor hate me when I come to call
To take him back again?"

It seems to me I heard them say,
"Dear Lord, thy will be done.
For all the joys a child shall bring,
The risk of grief we'll run.

"We'll shelter him with tenderness,
We'll love him while we may,
And for the happiness we've known
Forever grateful stay.

"And should the angels call for him
Much sooner than we've planned,
We'll brave the bitter grief that comes
And try to understand."



Please pray for Priscilla. She has had a relapse and has started treatment again in Texas. She has AML – same leukemia as Mason had. Her site is www.caringbridge.com/mn/butterfly

Blessings,
Sandy

Thursday, December 23, 2004 2:32 PM CST

Merry CHRISTmas to all of you! May you all be filled with peace, happiness and love of God today and everyday.

I can picture Mason enjoying his 2nd Christmas in heaven with Grandma Dorothy and Grandpa Gene. Being this is Grandma’s first Christmas in heaven, Mason must be filling Grandma in on what happens in Jesus’ paradise during Christmas.

This Christmas will be the first Christmas in over 30 years I won’t be spending with Janice, Fr. Ed, Jim and Joanne. Sure will be different. My lovely aunt Joanne is suffering with ALS and has gotten much weaker within the last couple months. Like Mason, she must isolate herself from others. Please keep her and Jim in your prayers.

The boys and I have a few events planned over the next couple days. Tomorrow we will go to Children’s Minneapolis and drop off some gifts for the families on 8th floor. Two years ago we were at Children’s for Christmas. Mason’s counts were bottomed out and his ANC was zero. He had the best decorated room on 8th floor. His best friend Jonathon Vouk brought him the coolest tree – fiber optics tree. All the nurses fought to have Mason for their shift because he had such an awesome room.Unfortunately, he was the only one on the floor that didn’t get to leave for Christmas due to his counts. Hopefully we will get to see some of the doctors and nurses who were a big part of our lives for 3 years.

Below under links, I have posted a couple websites to follow. About a month ago, a gal from Watertown was hit by a drunk driver. She is lucky to be alive. The driver passed away but she has pulled through and seems to be making great progress.

The other one is a young man from Michigan who died of cancer last week. He, like Mason was inspiring and loved by so many. His family needs your prayers.

In Christ,
Sandy, Adam and Zach

Wednesday, November 24, 2004 5:35 PM CST

I found the following on Katja’s website:

TOGETHERNESS

Death is nothing at all. I have only slipped away into the next room. Whatever we were to each other, that we are still.

Call me by my old familiar name; speak to me in the easy way you always used to. Laugh as we always laughed at the little jokes we enjoyed together.

Play, smile, think of me, pray for me. Let my name be the household word it always was. Let it be spoken without effort.

Life means all that it ever meant. It is the same as is ever was; there is absolutely unbroken continuity.

Why should I be out of your mind because I am out of your sight?

I am waiting for you, for an interval, somewhere very near just around the corner. All is well. Nothing is past; nothing is lost.

One brief moment and all will be as it was before – only better, infinitely happier and forever – we will all be together with Christ.

Carmelite Monastery



Another milestone is around the corner – another day to get through. The day after Thanksgiving 2002 was that horrific day I wish never would have come – the day Mason relapsed after being in remission for 15 months. The day Mason and I drove to Children’s hospital is still fresh in my mind. Dr. Sweetman knew when she sent us down to Children’s that Mason’s leukemia was back but didn’t tell us. Dr. Steve was informed by her before we got there. The look on his face said it all. Mason and I stayed at the hospital for much of the day that day only because I was afraid to drive in the state I was in. I remember collapsing in the skyway on the way to the car. We then were brought back to clinic by a nurse passing by and met with Brian the Chaplain and Susan our social worker. They were a great support to me that day. That’s the day that Brian asked if I was ready to hand it over to God. I wasn’t at the time. It took 3 months later for me to finally say I can’t do anything other than love Mason, pray for him, and be there with him until he is called to be with the Lord. I give thanks for all the wonderful things God has provided me with, to name just a few:

-My 3 wonderful boys. Zach who I pray for everyday. I pray and ask God to bring us together like a mother and son should be, Adam who is my stability, great friend, keeps me laughing and has lots of love to give, Mason who was and continues to be my best friend (in a bittersweet way), an inspiration to so many and is an incredible gift from God. Thank you God for Mason even if it was only for 6 years. He taught me so much about life.

-My gracious family. Even though we lost my mom this year, I am thankful for having her as long as we did. My sister and I had the best mother anyone could ask for. She is greatly missed. My sister who has helped me so much throughout the last few years. Without her I don’t know where I’d be. All my other family members – aunts, uncles and cousins.

-All the great people I work with at Master Craft Labels. What a wonderful feeling to enjoy getting up in the morning and going to work. I couldn’t ask for a better company to work for.

- All my friends. With out them all I would have so many more restless nights.




Little by little, with the help of my WONDERFUL counselor Susan, each day I am getting stronger and looking at Mason’s passing in a more positive way. I never believed that would be possible. I still, however, have my “Mason moments” usually unexpectedly (hits me like a brick). My counselor too had lost a child. When I meet with her, she listens attentively and will tell me if what I am thinking, feeling and doing is normal. So far, everything I am experiencing is normal according to the grief handbook. The best way I can explain this first year of grief is, it doesn’t get easier – it just gets different.


I give thanks for Jesus dying on the cross so that we will all have eternal life. I give thanks to Jesus sparing my precious Mason from pain and giving him an eternal life in heaven.

Blessings to all and have a good holiday.

Thursday, Oct. 7, 2004 5:10 AM

All together our team, "Getter Done"
raised about $2,300. Thank you to everyone who donated to this great organization.

I recently learned more about how the monetary donations are spent and how these donations have made such a huge difference. Over the last few years these donations have saved lives of many cancer victims. I totally believe that even though Mason didn't survive from this horrible disease, he did benefit from donations to this organization. Even in the last few years new research has helped cancer patients extend their remission time. We feel lucky to have had Mason with us for an extra 2 years. He brought so much joy and love to so many peoples lives. I know every parent talks highly of their children but I do believe these kids who are for some reason stricken with diseases like cancer have something very very special about them. I can name so many kids I have met through the hospitals and website that are so truly amazing. Does God pick those special amazing ones to be up there with him? If so, why? These are all questions we will have until we are called to be with Him.

Sandy

Monday, September 20, 2004 6:30 AM CDT

Please pray for Katja's family. Katja joined Jesus this weekend in eternal life. Mason and Katja both had AML. Their first diagnosis was in the same month and year. They were at Children's at the same time. I think Mason got over to the U before Katja but soon after she had her first BMT too Mason was in remission for 15 months, Katja for 18. Their stories are very similar. Katja has a baby brother who will never get to know her. Why? With every cancer kid that dies (especially those we know) I have more questions for God. Why can't he spare the children and take the older ones? We will some day have the answers but until then, one has to try and keep the faith. Easier said than done.



www.caringbridge.com/mn/kajtas

Monday,, August 30,2004 11:55 PM CDT

Mason,

You left exactly 365 days ago. When you left you forgot to tell our hearts how to live without you. For the last 365 mornings, I have woken up after a restless nights sleep and found you not there with me but in a better place. A better place where there is no more pain, no leukemia, no conflict. Your new surroundings must be awesome. I have read books about your new place – heaven. They say there are colors there that we couldn’t imagine even existing. I can just see you flying free with all of your angels. Have you been showing Grandma Dorothy around? What was it like to see Grandpa Gene and Grandma Dorothy reunited? During your short life you taught me so much. You taught me what is important in life - people are important in life! You knew that at your young age. It is apparent that God made you most wonderfully. There are many other lessons in life you taught me. You were amazing and inspiring with your determination and strength. You fought and fought but I believe God needed you for some reason to be with him. I try and keep this in my mind day after day. I know you are extremely content where you are even though you see us here struggling every day without you.

Next week school will start. You would be in 2nd grade this year. I run in to your friends often and notice how much they have grown. I often wonder how much you would have grown by now and how handsome you would be with your curly hair and strong build.

Yesterday we had a wonderful party in memory of you. Ryan Dostal (your cousin) gave us a tree for you. Diane and I have worked on planting a garden for you. The tree will be part of your garden. I am working on having a Scooby-Doo carved out of a log to set in your garden along with a fountain. We all watched the video that Julia took of you when after your last transplant. I watch that video once in awhile when I am really missing you. Did you get the balloons we sent up to you. We all put messages on them and as your song was playing, we released them to heaven.

My brother, Adrian is here from Argentina. I wish you two could have met each other. He is an amazing guy – just like you. He and I will be up there with you some day. That is the one happy thought that keeps me going day after day –the thought of being with you again.

Mason - you taught me what love really is. I love you so much and miss you terribly. I know you would want us all to continue living and being happy even though you are not here. I need your help in order to live like that.

Hugs and Kisses,
Mom



Please pray for Katja and her family. They recently discovered Kajta’s leukemia has returned. She has already had 2 bone marrow transplants. What an incredible young lady she is. She has a new baby brother who deserves to grow up with her. Her website is: www.caringbridge.com/mn/katjas

Pray for our friends from town – the Scanlon’s. Many of you may have already heard about Josh’s gymnastics accident. Josh is a friend of Zach’s. He is currently paralyzed from his navel down. Their entire family was there for us when Mason was ill. They helped out tremendously at his last benefit – his Mega Party. Josh has a great attitude and his family is very close and loving so I have faith that in time he will walk again. His website is: www.caringbridge.com/mn/joshscanlon
Also please pray for Connie and Mark. They were only given a short time to be with their son Noah. Pray for God to give them strength. www.caringbridge.com/mn/babynoah

For those who are interested, my friend Sandy Loehrs and I are raising money for the Leukemia/Lymphoma Society. “Light the Night” walk is September 25th at Phalen park. We will be walking 2 miles. We are walking in memory of her daughter, Stacy who passed away 5 years ago and Mason . Anyone interested in walking with us or donating please let me know. We will be having an ice cream social in town and I am selling teddy bears at the open house at school. I have over 60 bears to sell. They are $10 and very cute. I will send them out to anyone far away.

Wednesday, August 18, 2004 6:17 PM CDT

I didn’t intend to write until August 30th – the 1st anniversary of Mason going up to heaven. Yesterday must have been a wonderful day in heaven for many. My mom joined Jesus, Mason, my dad, another grandson (Angel) and many others. What a glorious reunion!

For those who didn’t know my mom, she was only 68 and had Alzheimers (at least that’s what we think she had). She was the most wonderful, generous, caring, loving women. I am proud to say she was my mom. She will be greatly missed but now she is with my dad whom she hasn’t been with for 28 years.

Funeral arrangements are as follows:

Sunday, August 22nd:
Wake from 4:30 to 8 pm at the Johnson McBride Funeral Home in Glencoe

Monday, August 23rd
Funeral @ 10:30 at St. Pius Catholic church in Glencoe.

Masons has almost been away from my arms for 1 year. Hard to believe! I take comfort in knowing that his grandma is now up there with him. I can’t wait for that day to meet Jesus, be with Mason and my mom and dad.

Love to you all,
Sandy

Tuesday, July 6, 2004 7:04 PM CDT

------------------------------------------------------------

My Dearest Mason,

Never have I been inspired more. You left early because you fulfilled your purpose. I'm sure your purpose was to show people how much one person can love and cherish life. You were taken back to the place we all began because you fullfilled that purpose. Through your never-ending smiles and cheerful attitude, people learned how to live the greatest gift.

Sometimes I wonder how we ever make it without you here to guide us. And then I wonder how I could even think such a thing. You are here. Your spirit echos still amongst those you taught. Never will a day go by when I will not think of you. There will never be a time when you are forgotten. Ever. Your story will be told through the generations, and your spirit will live on.

You are my hero. You taught me how precious life really is. You showed me how to let others know that I loved them. You let me know that life is to be lived; lived in a way that shows everyone you care. Who did you learn that from? I'll bet you just knew.

Will life ever be the same? I mean, like how it was when you were here in body? I don't think so. I think it's better. That sounds awful. But you have given people the greatest opportunity to love and cherish the important things, the things that really matter. Because you were here such a short time, people can reflect on the things they wish they had done differently. Things we can improve on.

Friday, June 25, 2004 4:11 PM CDT

The boys and I moved to a house in Watertown. We are adjusting to the new house and Adam is enjoying living in town. Zach is spending more time with his dad. The house is quite a bit bigger than the other house. It sure is nice not to have all that lawn to cut. I miss our dog Simba and Mason’s cat Fuzzy. Mason’s other cats are back with the Schuette’s. Mason’s dad didn’t want to keep them and I couldn’t have them in town. It’s comforting knowing they are in a good home and we can visit them anytime. The move was much needed – a fresh start is always good.

I want to thank Theresa and Jim Sexton, Chance, Rick and Lucas Anderson, Bonnie and Nick DeNomme for all their help in moving. They all worked so hard. You guys are the greatest! I couldn’t have done it without you!

I was just reading another caringbridge website and read about the annual Mississippi cruise trip for cancer kids and their families. For the last 3 years we have gone on the trip. The boys always had such a good time. It’s always so good to see a lot of the families, nurses and doctors. We were served lunch, the boys would get spoiled with toys and all 3 would come home with their faces painted. 2 years ago Dr. Steve and his family were on the cruise. Mason adored his primary oncologist, Dr. Steve. Mason was in remission for almost a year then. I didn’t realize the trip was yesterday until I read it on Noah’s website. Last year I scheduled a clinic appointment hours before boarding. I never asked Dr. Steve, but I think he was concerned then about his counts. His platelets were very low for just getting platelets a week prior. I now wonder if Dr. Steve feared a relapse on that day and just didn’t let on.

Last year at this time too Mason was so excited about his “Mega Party” (the benefit the community organized for him). When we would go to the playground at the school or to baseball games in town Mason would go up to kids and ask them it they are going to his “Mega Party”. A lot of the kids would say, “I would but I’m wasn’t invited”. He’d then tell them they didn’t need to be invited. The Mega Party was 3 days before we found out the leukemia was back. I often look at those pictures of Mason, his friends and all the wonderful people at the benefit. Mason ran nonstop the entire time. He must have been in pain but never let on. It was his special day and he sure did enjoy it!

Last 4th of July was another unforgettable time together. Zach, Adam, Mason and I spent the long weekend with Jim, Joanne, Janice, Enrique, Marco, Christina and Fr. Ed. The berries were in full harvest at that time. As Joanne says, I don’t think Mason even tasted a berry but he loved to pick them. He was obsessed! This weekend was a very emotional weekend – days after we were told Mason was going to die. A year later I wonder how did we get through those days? We will be going to Jim and Joanne’s for the 4th again this year - another bittersweet day to get through. I keep waiting, hoping and praying days get easier but they don’t.

When I go to Adam or Zach’s baseball games, I run into friends of Mason’s or I see the playground Mason and I used to play on, the paths we used to walk on or a tree he used to climb. The pain is so deep. He is missed by so many.

Please continue to pray for Lakota, www.caringbridge.com/mn/laplafcan
Mathew, www.caringbridge.com/mn/mathewodette
Katja, www.caringbridge.com/mn/katjas
Noah, www.caringbridge.com/mn/noahhurley
And just this last week Ian went to heaven, please pray for peace for his family, www.caringbridge.com/nj/ian

Also, please keep my beautiful, loving, talented aunt Joanne Ardolf Decker in your prayers. I think I mentioned a while back she has ALS. She has been doing well for so long but could use prayers.

Wednesday will mark the 10 month Mason has been away from us. Wow, 10 months! Mason, I miss you as much – even more now than I did 10 months ago. I so look forward to the day when we will be together again.

Much love to all of you,

Sandy

Friday, May 28, 2004 3:22 PM CDT

Mason, –

Happy Birthday my little Buckadoo! It seems so long since YOU'VE BEEN GONE FROM MY ARMS, EVERYWERE I LOOK I SEE YOU AND I MISS YOU SO much!

Just the other day, when I was at Adam’s baseball game, I had this memory and vision of you pop in my head and it was almost like you were right there with me again. So many times we would go to your brother’s sporting events, you would get bored watching them so we would play on the playground, search for long sticks to make walking sticks out of or just sit on a blanket and talk - about nothing special or important - just talk. I miss those days with you! How I wish I could hold in one more time, tell you a Scooby story just one more time, walk down in the valley with you just one more time. I have these moments (I know you have seen my “Mason moments”), I have people that have told me “it’ll get easier”. It hurts as bad now as it did 9 months ago when you left us. I don’t see how it ever will get easier. I hope that some day I will learn to cope with you being gone. When I see you friends in school, I think about how they are now reading, adding, subtracting, tying their shoes. You never got to learn those things.

During those days you were home with all of us, I spent all my time and energy trying to make you comfortable and without much pain. I wish we could have done more but you became so sick so fast. I know you are watching over all of us. You see me crying a lot, I know. I also know you don’t want me to be so sad but I can’t seem to be happy without you. Remember how we used to laugh? The laughter is gone. There are so many many things I miss about you – of course your brothers miss you too. They don’t talk much about you unless I say something first. I think they think I will get sad and cry if they mention your name. I do cry and get sad sometimes when I hear your name or think of you but we need to hear your name. I wish more people would bring up your name and talk about you. I need that to get through my days.

Lori (Mel) and I are going to meet Fr. Ed, Jim and Joanne at the cemetery on Monday. I have these beautiful flowers to put near your grave. I wish I was buying you balls, movies, Scooby-Doo stuff, etc. and watching you enjoy them. It should not be like this. It’s not fair!!!! I hope someday I will understand why this happened to you.

Your brothers and I are moving to a house in town. You would have loved this house. We have our own swimming pool. You loved to swim! I can still see you jumping off the diving board at school. You wouldn’t jump off that board until you knew I was watching you. Jonathon will be only 2 blocks from us. You would have LOVED to be neighbors with him. You two were inseparable!

I believe in God and believe that you were taken from all of us for some reason that we are not able to comprehend.There has to be a reason that I gave birth to someone so special like you and then have you taken away from me to be left with a missing piece that can never come back to me. Will we really be reunited someday again? That is what I live for each and every day now that you are gone.

Are there birthday cakes and parties in heaven? This is your 1st birthday away from us and with your grandpa Gene, cousin Angel, cousin Scotty, cousin Garnet, your great grandpa’s and grandma’s, great uncle Leo and all the other special kids who fought cancer and are lucky to be with Jesus. I can only imagine the laughter at your party. Remember your birthday party last year? You and your friends had so much fun! Who would have thought that 3 months later you wouldn’t be with us.

I love you and miss you immensely my little Buckadoo. Happy 7th birthday!

Mom

Friday, May 21, 2004 6:45 PM CDT

I didn't intend to update until May 30th - Mason's birthday. However, I wanted to tell everyone to try and watch UPN 29 on Monday, May 24rd at 10 PM. Past entries, I have mentioned some of our cancer families to pray for. Mathew and Lakota live near St. Cloud. UPN 29 will feature them both on the Sunday night news. Through Caringbridge and e-mails, I have gotten to know these families. What incredible people they all are!

Thank you all for your continued support and prayers for our family. Unfortunately, we still need them so don’t stop.

God bless you,
Sandy

Thursday, May 6, 2004 6:05 AM CDT

I think May will be the hardest month to muster through each year. Mason was diagnosed May 15, 2001, his birthday is May 30th, Mother’s Day and Memorial Day all are milestones in May.

He had an awesome birthday party with all his buddies. He had a great bunch of friends in Mrs. Sexton’s class. I remember how excited he was when Mrs. Sexton said she found the Scooby-Doo piñata for his birthday party. He also enjoyed the many days spent with Mrs. Sexton trying to catch-up on schoolwork. Mrs. Sexton made learning fun – they were great friends!

Last night I spoke to a wonderful friend of mine – Deb Minnehan. Her son, Matthew was one of Mason’s friends. Recently Matthew talked to her about what he wants to be when he grows up. After Debbie told me about their conversation, it was obvious that he continues to have Mason on his mind. Matthew wants to be a doctor and “find the cure for leukemia”. One of my fears is that Mason’s friends will not remember him as years go by. I know Mason made an impact on so many people but his 6-year-old friends are so young that I do not know how much they will remember of him. Debbie and I talked about Mason’s tree that was planted in the courtyard of the school. I have not seen it since last fall but evidently, it is budding. Katie (Debbie’s daughter) and her Girl Scout troop will be planting flowers around his tree. Debbie and I are planning to add more flowers and putting boulders around the tree.

There is not a day that goes by that I do not have a “Mason moment”. It seems to hit me like a brick. Those that have lost a child can relate to this horrendous painful feeling. Attending my support group on Thursday nights has helped me so much. One week, on a Tuesday, I was telling a friend how much I needed to get to my group meeting. Just being around those moms and dads who can relate to me thoughts, feelings and experiences is so comforting. I wish I were able to control these frequent and uncontrollable thoughts.

I have started a memory box. A friend of mine (Claudia) lost her son Taylor a few years ago and she gave me the idea. I have had this fear of forgetting Mason’s one-liners, stories, actions, favorites – I can go on and on and on. The more time goes on the more I feel I will forget the special times we had together. Occasionally, a memory of him pops in my mind so I will write it down and stick it in my box. If any of you want to contribute, please do. I would love to hear about your memories with Mason.


I pray every night for all the cancer kids and their families. When I read other caringbridge websites, I relive those days. It’s amazing how many kids out there are suffering this horrible disease. I pray too for all the parents and siblings who have lost their children. Remember, they are not gone; they are alive in their eternal home, happy and free of pain. We miss them but they are with Jesus in eternal life. We will all be together someday. What an incredible day that will be!!!!

Please continue to pray for Lakota, Katja, Matthew, Rosie and Noah. Lakota’s family were recently told she has a secondary cancer (Wilm’s). I pray God gives them the right direction to take. Katja, Matthew, Rosie and Noah have recently had a bone marrow transplant.

Happy Mother’s Day to all you mothers out there. Don’t let a day go by with telling your children you love them. One never knows what tomorrow will bring!

God bless,
Sandy

Wednesday, April 27, 2004 5:22AM CDT

God is too wise to be mistaken, God is too good to be unkind, when you don't see His plan, when you don't understand, when you can't trace His hand..trust His heart.


May you all find Him,
Sandy

Thursday, April 8, 2004 6:05PM CDT

Several times, I have started a new journal entry only to soon after erase it. I do not know why it is so hard for me to write. With the change of seasons, I seem to be more sad than usual. I have vivid visions of Mason and I walking to and from clinic at the U feeding the squirrels peanuts, walking to Blockbuster to get a movie or just taking a stroll over the Mississippi (as Mason would spell Mississippi over and over again) Of course he wasn’t able to withstand the ½ mile hike from the apartment to clinic so I would push him in the stroller. We had wonderful times together then even though he was still recovering from complications of the bone marrow transplant, struggling to take medicine, having to replace his feeding tube 2 to 3 times a week because he would throw them up. All that he went through and yet he still enjoyed waking up in the morning and he accepted having to go to clinic for most of the day for transfusions/procedures. Mason was so accepting of his illness and didn’t complain. God made him most wonderfully!!!

When will this all get easier? I have been attending a support group in St. Paul once a week and that seems to be what we parents struggle most with. You would think that time will help heal this loneliness and pain.

Now that the weather has been nice, getting the boys to bed at a reasonable time has been
hard. All they seem to want to do is play ball, ride their bikes and play with the animals – which is understandable considering they have been indoors during the cold winter months. Recently we have been blessed with new neighbors who have a bunch of boys. They all get along remarkably. They are wonderful caring people. I often think of how Mason would have benefited from them. One of the little boys is Mason’s age – Nolan. Mason would have been in 1st grade with him this year at the same school. I want to thank their parents – Jeannie, Lance, Karn and Jay for watching Zach and Adam when I have to stay after work and attend my support group.

The boys and I will go to Mankato/Nicollet for Easter to be with Janice, Enrique, Marco, Christina, Jim, Joanne and Fr. Ed. We will go to Mankato to see my mom for part of the time but the rest of the visit will be at Fr. Ed’s. Last Easter, we were there also. One of my favorite memories of Mason was last Easter. The whole family gathered around the table coloring Easter eggs. Every year we color hard-boiled eggs and confetti eggs – a Mexican tradition. The confetti eggs are stuffed with confetti and we decorate the outside with markers. After we color and fill the eggs we gather outside in a circle and break the eggs over each others heads. I often wonder what Fr. Ed’s neighbors think of us. Mason LOVED coloring eggs. He was the most dedicated one of all of us. Diligently and with much delight Mason tackled the messy job. After much time went by he said, “I’m done egging”. Mason enjoyed playing checkers with Fr. Ed last Easter too. Fr. Ed was impressed with how well he played. I was looking at the pictures the other day. He had a different look to him then. The CSA or cyclosporine (oral steroid medicine) he was taking made his hair darker, face round, eyebrows bushy and grew hair on his back and arms. I always told him how handsome he looked. He was proud of the hair on his back.

Mason’s 7th birthday is coming up – May 30th. There are so many milestones throughout the year that are so hard to get through. The change of seasons, birthdays (not only his regular birthday but his 2 other birthdays. Those being his 2 bone marrow transplants- Aug. 20th and Feb. 7), memorial day, 4th of July (last 4th we had a great time at Jim and Joanne’s despite the recent news of his relapse), Mega party on June 28th (benefit the community gave him), the date of his last day with us and so many more.

I am struggling with adding Scooby-Doo to this website. It was created by a caring lady named Helen. She did a great job. Tune in later- I am hoping to get it to work soon.

Please continue to pray for:

Katja – www.caringbridge.com/mn/katjas
Lakota – www.caringbridge.com/mn/laplafcan
Noah – www.caringbridge.com/mn/noahhurley
Mathew – www.caringbridge.com/mn/mathewodette
Rosie – www.caringbridge.com/mn/rosie

If anyone is interested in donating marrow for those needing bone marrow transplants, here is the website: www.marrow.org . It’s a relatively painful procedure if your marrow type was ever needed. Think of how great it would be to know you saved somebody’s life.

Have a blessed happy Easter all!

Sandy

Friday, March 12, 2004 5:25 PM CST

In The Midst Of Grief

We often ask why when we struggle with grief,
and wonder if God really hears.
Though He doesn't answer in ways we would chose,
you can trust He is sharing your tears.

He knows your confusion, your anger, and pain,
He experienced them all at the cross.
When His Son shed His blood, for you and for me,
God knew the true meaning of loss.

He will sustain you with mercy, with grace and with love,
till the day we will all meet again.
In our real home, in Heaven, free of sickness and death;
free of suffering, anguish and pain.

What a beautiful day, when we meet them all there;
oh, the joy, oh, the glory and love.
God will dry every tear, He will mend every heart,
in our real home, in Heaven above.

Monday, March 1, 2004 6:00 PM CST

How can it be 6 months already! Half a year without holding Mason, hearing his giggle, his jokes and all the “I love you’s”. His loss continues to be harder today than it was August 30th. I miss him so much!

From the outside, I look normal. My clothes probably match (most days), I try to laugh, eat well, sleep, I go through my days as I always have. There is only 1 thing that is different about me – something so precious to me that is missing- Mason.

I believe God has given me this painful lifetime experience (the death of my amazing son) to somehow pass on something meaningful to others. Whether “the others” are my boys, friends, family or other cancer families. I need to take what I can from all this, and press myself to move on. I wish it was all that easy!

Yesterday the boys and I were honored to help celebrate Fr. Ed’s 40th anniversary of priesthood. What a joyful day surrounded by so many wonderful people. Fr. Ed is loved by so many. In 40 years he has inspired so many. I am so very proud to claim him as my uncle.

Fr. Ed is the pastor of St. Paul’s Catholic Church in Nicollet, MN. Late July, Fr. Ed suggested Mason receive his first communion, sacrament of the sick and be confirmed. We knew Jesus planned to take him from us soon so Fr. Ed gave him all the sacraments so that Mason would zoom right up to heaven – no stopping. During mass yesterday I remembered that day in July when we all were together.
I was not able to control my tears. Uncle Jimmy was Mason’s sponsor. Mason was not feeling good that day but he knew how important it was to be there and as usual he cooperated. His beautiful curly hair was starting to fall out again.I’ll never forget how excited he was about wearing the suitcoat Adam wore for his first communion.

I still have a hard time attending parties where there is so much laughter and joy. There are so many times where I’ll look at someone that is having a good time and think how can they be so happy. Don’t they know that Mason died! I know this is unfair to so many but this is my normal reaction until I pull myself together. I know others don’t miss him as much as I do. How could they. I should just be happy God gave me Mason for 6 years. I am proud to be Mason’s mom. How could I not be! He was incredible, he was my strength. Now I need to find a way to continue being strong with just the memories I have of him. Again, it’s not that easy.

Since I last wrote, Jesus has welcomed 2 new angels whom we knew from 8th floor Children’s Hospital in Minneapolis. Christie was 14, www.caringbridge.com/mn/christie and Connor, 5 www.caringbridge.com/mn/connorstokes - both had AML leukemia.
Please pray for them along with the following children who have relapse recently:
Lakota – www.caringbridge.com/mn/laplafcan ,Katja – www.caringbridge.com/mn/katjas and Rosie @ www.caringbridge.com/mn/rosie
I know all too well what they are all experiencing – emotionally, spiritually and physically.

God bless you all!
Love,
Sandy, Zach and Adam

Recently, Mason was added to another website. If you have a moment, check out www.tumbleweedfoundation.org and go to "Angels Among Us". Mary Kitchen started this website as a result of losing a friend to cancer. She is a very loving person and wishes for all of us to be aware of how many young beautiful children we are losing every day to cancer, etc.

Friday, January 30, 5:45 pm

Tuesday, February 10, 2004
New Photos posted under "view photos"

Five months ago today Mason passed away. In some ways it seems like just yesterday but other times it seems like years since I hugged him, heard his voice, told him a Scooby-Doo story or just had him sitting next to me in the car.

This week of cold reminded me of Mason’s Make-A-Wish trip to Disney World and Give Kids the World Village exactly 2 years ago. We left when it was this cold. The other night I watched the video of the trip. The boys had the greatest time. We visited so many places and did so much. Mason had been in remission for 5 months then, his hickmann was replaced by a port underneath his skin so he was able to swim, run and play like a normal kid I remember meeting other families on the trip. Some of them knew their child only had a few weeks/days to live. We, on the other hand, thought that chapter in our lives was over and Mason was cured. I know those families weren’t able to enjoy their trip like they deserved knowing that they child was not going to live.

One year ago now we had just finished work-up week at the U. The last day of work-up I will never forget. Children’s hospital was convinced that the build up around his hickmann was normal but when we got to the U, the doc’s said the cuff had pulled out and instead of being inside his body/chest it was outside. This meant it needed to be replaced. Without sedating Mason, they pulled it right out of his chest. I recall not wanting to witness the procedure but Mason wanted me there. He was such a good sport throughout all the complications. Along with more chemotherapy Mason was taken down to radiation 2/day for 4 days prior to his 2nd bone marrow transplant. The first time he went in that room he was strapped to the table and asked to sit still while listening to me recite a Scooby-Doo story. To me, radiation (especially full-body) is very frightening. It’s invisible and hard to believe it does what it does to a body. The many sores he had in his mouth, lips and throughout his digestive tract were extensive and I’m sure bothersome but he kept on fighting. February 7th, 2003 Mason had his 2nd bone marrow transplant donated by his brother, Adam. I will always remember how concerned Mason was when Adam came up to 4A after his bone marrow was harvested. Adam was wheeled up in his bed and passed by Mason’s window. Mason said, “I hope Adam is feeling OK after being put to sleep”. After he got in his room, Mason called him on the phone in the next room and said, “Adam, come over to my room when you feel better and play Nintendo with me”.

Last Saturday 6 of us moms met for the first time. We all have lost a child within the last year. We all shed tears together and seemed to be feeling and experiencing the same emotions. One mom said something that I am trying to keep in mind every morning I wake up. She said, “every day that passes is one day closer to being with my son”. If I can remember this, I think I’ll be OK.

I appreciate the phone calls from many of you. I’m sorry if I don’t return your calls
right away. Days seem quite overwhelming at times. Please continue to pray for my family. We are not only going through grieving the loss of Mason but there are other things we are struggling with. God will help us through them. There must be a reason for all of this. Someday I will know the answers but until then we need to keep the faith and keep the strength to go on.

Stay warm!
Sandy

Thursday, January 15, 2004 8:58 PM CST

Today I looked back at what I wrote a year ago when we were at Children's. While reading the entry I felt for a moment like I was reliving that day. I remember like it was yesterday. I could see Mason lying in that bed, hooked up to his morphine pump, complaining about taking his medicine and feeling frustrated about all the uncertainties. A year ago we weren't sure if we'd even get to the U for a second transplant because of all the complications. At the time all the bumps and hurdles didn't seem that enormous but now I look at what Mason went through and can hardly believe he had the strength to keep going like he did. He truly was a fighter and fought to the end.



Some day I am hoping that the memories I have of Mason will make me laugh and smile. That is what should eventually happen (so I am told). Now, however, when I think about special times we had together (and wow were there lots of them), all I do is cry and wish he was here. Our family is going through more hard times now. Most of you know that Kurt and I are getting a divorce. When Mason was here he was always there to give me the energy to keep going by telling me he loves me, kissing me, hugging me or telling me a joke. God gave him that special gift. I always told him "God made you most wonderfully". In fact, Mason and I used to read a book titled "God made you most wonderfully". I ran across that book and a few other favorites of Mason's the other day. I would read to him everywhere we went-because we had a lot of time to wait whenever we went to clinic or when we were in isolation in his hospital room we read a lot of books. I always knew he would be the big reader of the 3 boys but he never got the chance to learn to read. Another thing Mason never got to learn to do that bothers me is tie his shoes. I must have bought him 4 new pairs of shoes simply for that reason. We'd spend a few days working together on it but he'd soon lose interest. Last year at this time I was bound and determined. I never wanted to push him or make him do anything he didn't want to do. Seeing him in so much pain was so heartbreaking. I remember giving in to him for so much because everyday he tolerated so much and missed out on normal kid things. Once in a while I'd take a break from being in the room with him and take a walk around Franklin and Chicago in Minneapolis. Walking by schools was so hard. All I could ever think about was why, why Mason. He had such a love for life and he deserved to be out playing like all the other kids I saw.

I want to tell all of you wonderful, loving friends and family members that without all of you back then, now and inbetween then and now, our journey would have been so much more difficult. Reading the guestbook of the website from a year ago helped Mason and me back then. This website was something that helped him through the tough days. He so enjoyed reading the messages from all of you. It made him feel connected when he couldn't be visited due to being immune supressed.

Please continue to pray for a cure for cancer. We have lost so many young innocent friends to cancer - especially AML leukemia. The boys and I pray to all of God's newest angels. From what I have read about heaven, they are pretty lucky to be in the presence of Jesus', but we here on earth are hurting and missing them deeply.


God bless,
Sandy, Zach and Adam

Friday, January 2, 2004 7:18 PM CST

The surgeon asked, "Would you like some time alone with your son? One of the nurses will be out in a few minutes, before he's transported to the University."

Sally asked the nurse to stay with her while she said goodbye to her son. She ran her fingers lovingly through his thick red curly hair.

"Would you like a lock of his hair?" the nurse asked. Sally nodded yes. The nurse cut a lock of the boy's hair, put it in a plastic bag and handed it to Sally.

The mother said, "It was Jimmy's idea to donate his body to the University for Study. He said it might help somebody else. "I said no at first, but Jimmy said, "Mom, I won't be using it after I die. Maybe it will help some other little boy spend one more day with his Mom." She went on, "My Jimmy had a heart of gold.. Always thinking of someone else. Always wanting to help others if he could."

Sally walked out of Children's mercy Hospital for the last time, after spending most of the last six months there. She put the bag with Jimmy's belongings on the seat beside her in the car. The drive home was difficult. It was even harder to enter the empty house.

She carried Jimmy's belongings, and the plastic bag with the lock of his hair to her son's room. She started placing the model cars and other personal things, back in his room exactly where he had always kept them. She laid down across his bed and, hugging his pillow we, cried herself to sleep.

It was around midnight when Sally awoke. Lying beside her on the bed was a fold ed letter.. The letter said:

Dear Mom,

I know you're going to miss me; but don't think that I will ever forget you, or stop loving you, just 'cause I'm not around to say I LOVE YOU.. I will always love you, Mom, even more with each day. Someday we will see each other again. Until then, if you want to adopt a little boy so you won't be so lonely, that's okay with me. He can have my room, and old stuff to play with.. But, if you decide to get a girl instead, she probably wouldn't like the same things us boys do. You'll have to buy her dolls and stuff girls like, y'know.

Don't be sad thinking about me. This really is a neat place. Grandma and Grandpa met me as soon as I got here and showed me around some, but it will take a long time to see everything. The angels are so cool. I love to watch them fly. And, you know what? Jesus doesn't look like any of his pictures. Yet, when I saw Him, I knew it was Him.

Jesus himself took me to see GOD! And guess what, Mom? I got to sit on God's knee and talk to Him, like I was somebody important. That's when I told Him that I wanted to write you a letter, to tell you goodbye and everything. But I already
knew that wasn't allowed. Well, y'know what Mom? God handed me some paper and His own personal pen to write you this letter. I think Gabriel is the name
of the angel who is going to drop this letter off to you. God said for me to give you the answer to one of the questions you asked Him -

'Where was He when I needed him?'

God said, He was in the same place with me, as when His son Jesus was on the cross. He was right there, as He always is with all His children.

Oh, by the way, Mom, no one else can see what I've written except you. To everyone else this is just a blank piece of paper. Isn't that cool? I have to give God His pen back now. He needs it to write some more names in the Book of Life.

Tonight I get to sit at the table with Jesus for supper. I'm sure the food will be great.

He sent The Angel of Mercy to come get me. The Angel said I was Special Delivery! How about that?

Signed with Love from:

God, Jesus & Me.



Let's see Satan stop this one. Take 60-seconds and send this to five other people, within the hour, you will have caused a multitude of believers to pray to God for each other. Then sit back and feel the Holy Spirit work in your life for doing what you know God loves.

Wednesday, December 10, 2003 3:14 PM CST

Happy Holidays!

Even though the loss of Mason is so painful, the memories are so vivid and will stay with us forever. The memories at this stage of our grief make us sad but I know Mason is OK now. As I look back on his last 2 1/2 years of his short 6 years of life, I am amazed at his courage and acceptance. Cancer became a part of his life - it was normal to him.

I remember being in the hospital with Mason last year at this time thinking THAT would be the hardest Xmas we'll ever go through. At the time, the thought of Mason dying in less than a year never came to mind. When at Children's exactly a year ago we struggled with many emotions. The chemo wasn't effective so we had to resort to "Mason's miracle medicine" - mylatarg. Thank God for mylatarg. Without this new drug we wouldn't have had that extra 8 months with him.

All the wonderful professionals at Children's, not only the nurses and doctors but volunteers, social workers, chaplain and Child Life staff made our Xmas at the hospital very pleasant considering the circumstances. Child Life kept us busy with making Xmas ornaments, included us in on special meals and parties. Mason's counts were low and he had no infection fighting cells (zero ANC) so those days were spent in isolation. Mason was so accepting of being back in the hospital. He rarely complained and asked to go home.

I am trying to get through the holidays by doing the same things we did in years past but it isn't the same. Walking through Target the other day I had a strong thought of Mason after seeing Scooby-Doo toys and other things I know Mason would have liked. I saw this Scooby-Doo popcorn maker and immediately grabbed it unconsciously. I had to leave the store without buying anything.

The boys and I are making Xmas goodie bags for the kids on 8th floor at Children's. We know from last year what it's like to spend Xmas in the hospital. If we can cheer up some of the kids there it'll make Christmas happier for us.

Coping with the loss of Mason hasn't gotten any easier. I try and control my sadness around others but let it all out when alone. I take time every day to pray to God and know that God is spending a lot of special moments with Mason. I know that those in heaven are lucky to have him with them. I can see Grandpa Gene and Mason building houses together - laying blocks. My dad (Gene Ardolf) was a masonry contractor and pasted away at age 44, when I was 11 years old. Mason was named after him.

A friend of mine at work (Wenda) gave me the following:

I see the countless Christmas trees around the world below. WIth tiny lights like heaven's stars reflecting on the snow. The sight is so spectacular please wipe away the tear; For I am spending Christmas with Jesus Christ this year. I hear the many Christmas songs that people hold so dear; But the sounds of music can't compare with the Christmas choir up here. For I have no words to tell you the joy their voices bring; it is beyond description to hear the angels sing. I know how much you miss me, but please remember dear; That I am spending Christmas with Jesus Christ this year. I cannot tell you of the slendor of the peace inside this place; Can you just imagine Christmas with Our Savior, face to face? I will ask Him to light your spirit as I tell Him of your love. So pray for one another as you lift your eyes above. Please let your hearts beat joyful and let your spirit sing; For I am spending Christmas in Heaven and walking with the King!

A couple weeks ago 7 year old Noah went to heaven to be with Jesus and Mason. Please pray for his family. They have an incredible faith and are an inspiration to me. Also, please continue to pray for Max Adams and add another young boy to your pray list - Kyle. www.caringbridge.com/mn/kylemyle

May you all feel peace and happiness this Christmas. Remember the true meaning of Christmas - celebrating Jesus' life.

Blessings,
Sandy, Zach and Adam

Wednesday, November 19, 2003 7:21 PM CST

Recently I was given a website address (www.heavenlylights.homestead.com) from another mother who lost a child. Here is a poem found from that website:

MY MOMS A SURVIVOR

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

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

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

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

My mom tries to cope with death
to keep my memory alive
But any one who knows her
knows it is her way to survive.

As I watch over my surviving mom
through the heavens open door
I try to tell her that angels
protect me forever more.

I know that doesn't help her
or ease the burden she bares
so if you get a chance to visit her
show her that you care.

For no matter what she says
no matter what she feels
my surviving mom has a broken heart
that time will never heal.

-unknown author-

Please pray for 2 little boys who are very sick right now. Noah and Max. Both Noah and Max have AML too. We know both families from our stay at Children's last December/January. Their website's are: caringbridge.com/mn/noahjay and caringbridge.com/mn/madams

Sunday, October 26, 2003 10:54 AM CST

I came across this article on another Caringbridge website recently and wanted all of you to read it too. The article speaks in volumns - exactly how I feel about Mason being gone.

THINGS WE WISH YOU KNEW ABOUT OUR GRIEF . . .

*Please say our "loved one's name. We desire to hear it.

*We may cry; please understand.

*We love to see photos of our "loved one".

*Grief is not contagious.

*We may lose weight, gain weight and have trouble sleeping. We are not as attractive as we once were.

*We can have highs and lows, but we are not crazy.

*Occasions such as Halloween and Christmas are difficult for us to get through.

*Our loss is not like losing a pet.

*Grief is a slow healer: please be patient with us.

*Grief changes people. We are not the same people we were before his death.

*We need our friends and hope to someday regain our zest for life.

(written by Suzanne Hugueley)

When Mason was still with us but yet I knew he was going to pass away, I wouldn't have been able to relate to this. However, after almost 2 months of being without him, I feel all the above. Mason not being with us has not gotten any easier as time has gone on. In fact, I know it has gotten more difficult. I find myself having a good day for part of the day then something triggers my emotions and I think about how I would give anything just to have one more hug from Mason, just one more kiss from him, be able to tell him one more Scooby-Doo story or hear him say our night time prayers together one more time. From reading books on grieving, I know this will continue on for my lifetime.

With Halloween coming up next week, the boys and I decided to visit Mason at the cemetery and bring him a pumpkin. Zach brought one of his Scooby-Doo stuffed animals too. We all wrote to him on the pumpkin. Everyone knows how he loved Halloween. We'll never forget the awesome party Karen and Linda put together for him. It was a simple request of his but yet meant the world to him.

I returned to work at Master Craft Labels. Being back there has been great. I enjoy working with each and everyone there.

Friday I did not go to work so that I could attend the tree ceremony at the elementery school. Debbie Minnehan, Theresa Sexton and Janice Vouk all worked hard on finding the right tree for Mason. When it is full of flowers next Spring I will post a picture of it so everyone can see it. The entire 1st grade, teachers, mom's and dad's, Zach, Adam and I were there to see the 1st graders sing one of Mason's favorite songs and dance to it-Tootie Ta. At the end all the kids had a little bottle of bubbles and they all blew the bubbles up Mason in heaven. Seeing all his wonderful friends was very hard and brought back so many memories of Mason playing with them. It is especially hard to see his best friend Jonathon. Those two were quite the team. I can still remember the first day they met. They were immediately best friends and inseperable.

I will try and update Mason's website monthly. My intentions are to write the beginning of each month. Finding the time has been hard but writing has been very therapuetic for me.

Love,
Sandy, Zach and Adam

Thursday, October 2, 2003 5:37 PM CDT

It has been 32 days since Mason left us to visit Jesus face to face. Oh how we miss the special moments each day would bring when we were together. Simple daily routines we had reading books (how he loved to be read to), Scooby-Do stories, hugs he would give me(so many times during the day), board games we would play, walks we would take, hearing his laugh and seeing his smile, tickling and scratching his back, making his favorite foods, and even going to clinic to play pac man together. I could go on and on, as many know - our times together were so very special.

What a change it has been going from 24-7 care for him to him being gone. Medical supplies are no longer in every room of our house.

The boys and I continue to talk about Mason and talk to Mason. During difficult days especially we ask for his help and at every night we pray to him. One beautiful starlite night, I was quite sad and shed many tears while sitting outside. One of Mason's kittens (Icicle) crawled up on my lap and brushed her paw on my check. I immediately knew that was a sign from my sweet little angel in heaven. Whenever I would cry or even looked sad he'd say "mom please don't be sad and don't cry, do you need a hug?" I miss those precious heartfelt words from him. Now they are only in my memories.

Mason's ashes were burind near his grandpa Gene (my dad) recently. The day Fr. Ed, Jim and Joanne, Janice, Christina, Marco, Zach, Adam and I had the burial it poured. One of Mason's songs we had play at the wake was "Help pour out the rain". My niece, Christina loved to sing that song and everytime we hear it we can picture Mason in heaven with a hose spraying us with water. Christina immediately told me that day at the cemetery that Mason is pouring out the rain from heaven. Many other songs put together for Mason's funeral (help from Randy and Ron) we listen to daily. Another is Godspeed (sweetdreams) a song my good friend Sharon told me about before Mason passed away. Before Mason would go to sleep I'd say "Sweet dreams" to him and I'd call him my little man. My friend Deb Hangartner gave me a CD of Selah which is part of "Mason's Mix" I've found all this music to have helped me cope, grieve and have found comfort during thes last 32 days.

The boys and I are so grateful for our wonderful family - Fr. Ed, Janice, Enrique, Marco, Christina, Jim and Joanne, Diane, Randy and Ron and so many others. During the 3 weeks Mason was home from the hospital they were an incredible support team for us. I can't even begin to mention all my caring friends and other family members who have been there for us. There are so many of you that had/have been so supportive.

I will be returning to the job I had before Mason was born. I feel very priviledged to have worked at Master Craft Labels for 7 years, have had 6 years at home with Mason and his brothers and now return to a job and people I so enjoy. God and Mason are looking out for us. - thank you God and thank you Mason!!!!!

I want to again thank everyone for the wonderful cards, phone calls, visits, lunches, meals and continued support given to us. The boys and I are doing OK. We'll never be the same without Mason but we try and tell ourselves and God that at least we were given 6 wonderfuls years to experience Mason's incredible gift of love.

There are so many children going through cancer. People don't realize how many families go through what we went through. Please pray for all those kids. The boys and I pray for all the children and families at Children's hospital and those going through bone marrow transplants at Fairview. Many prayers are needed for them. Many of you have been through 2 1/2 years with us, praying and supporting us. Mason said he'd help us down here. I think he especially wanted to help all those going through what he went through. Please pray for a cure for cancer and for all the families. I feel helpless so often when it comes to this - all we can do is pray.

God bless,
Sandy, Zach and Adam

Sunday, September 14, 2003 6:22 PM CDT

I've been wanting to update Mason's website for days but have been searching for guidance from the Lord to help me do so. Finally, today I am able to do so.

These last 2 weeks have been extremely hard. Words can not express the lonliness that is felt. For 6 years Mason had been my strength, security, best friend and my life. He continues to keep me strong even without his presence. He also continues to protect me from fear and negativity. His warmth and love he gave me for years taught me so much. During sadness and uncertainty he would always lift me up and say the right things to keep me going.

No one will ever really know how close he was to me. He always would say just the right things to me - no matter what the circumstance. He was so incredible!!!!!!!!!!!!
I miss his soooo much and think of him constantly.

The boys are doing OK. Adam talks about Mason a lot. Zach is more distant and quiet about his death.

The visitation and funeral were so special and well planned. Those days will be in our memories forever. I owe it all to my wonderful family and friends. Fr. Ed, Fr. Galletin and Fr. Frank worked so well together and made it very special. So Many people commented on the precious pictures put together by my sister Janice (Mason's Godmother), Janice Vouk, Pat Motzko, Bonnie DeNomme and Cheyenne Morrow. Music was put together with much time and effort by cousin Randy, Ron, Janice and dear friends of Randy and Ron's. Without my dearest cousin Diane Binder I think the 2 hard days of Mason's funeral would have been
more difficult. She flew in from California - thanks to my cousin Randy (her brother). What a surprise and joy that was!!! Mason loved her too so much. He loved all of you and so many times made it verbally known to us all. That's what makes it that much more difficult to let him go.

I haven't been able to go in to Mason's/Adam's school since school resumed. It's also very difficult walking down the driveway and seeing Zach and Adam get on the bus. All I can think is - Mason should be getting on the bus too. Memories and thoughts of Mason are surrounding me daily. I would never want to ever forget him, of course. However, whatever I do, wherever I am I think of my precious little man. I know there is a reason for his death and I find myself, very often, getting angry because he had so much love to give - playful and courageous, Mason filled our hearts with love.

We all appreciated everyone's constant concerns and thoughtfulness. Me and the boys are content at the moment being together and griefing in our own way.
Mason so wanted to help all of us from heaven. Please, everyone ask him to help you - he told us all he would and I know he will.

God bless,
Sandy, Zach and Adam

Sunday, August 31, 2003 1:53 PM CDT

Our precious little hero, Mason, passed away yesterday morning at 7:07 and is with Jesus in paradise. He had a very peaceful death with many of his loved ones surrounding him.

Funeral arrangements are as follows:

Visitation is from 3pm to 8pm on Wednesday September 3rd at the Immaculate Conception church in Watertown. Prayer service is at 7 pm that evening. Thursday there will be visition from 10am to 11am at the Immaculate Conception church. 11 am on Thursday August 4th the funeral will take place at the Immaculate Conception church in Watertown followed by lunch being served in the basement of the church.

Thanks to so many of you for your overwhelming support and prayers these last 2+ years of Mason's short little life.


God bless,

Sandy, Zach and Adam

Saturday, August 23, 2003 1:17 PM CDT

It's Saturday morning and Janice -- Sandy's sister --and I--Joanne, (Sandy's Aunt) -- are here with Sandy and Mason, Zach and Adam. Among us family members, we're trying to be here so that Sandy can continue to meet Masons's many needs on a 24-hour basis. Mason slept well through the whole night last night, and we're always grateful for that.

He continues to have bouts of severe pain, but with increasing doses of pain medicine, he regains comfort and is able to be up and about to watch movies, play with his gameboy, and enjoy his brothers and his new kittens.

Mason had been asking for a white kitten that he could name Icicle, so many folks have been looking for that white kitten only to find that they are quite rare. So, the Schutte family brought two white and "red" kittens who are now named Icicle and Speeder. Icicle has a white streak down the middle of her face which adequately gives her her name. Speeder has a red head that looks like a helmet. Thank you to all who have so diligently been searching for just the right kitten for Mason. We're grateful!

Many thanks to so many good people for your care, concern and friendship; for food, treats, flowers, cards and calls.
There are just too many to thank individually, but know that all that you are doing to support Sandy and Mason and all of us is making a wonderful difference. Of course, we ask that you continue the prayers as well. Perhaps nothing can help us all more than the prayers right now. Thanks and blessings to all!
Love from Sandy and Mason, Zach and Adam and all the extended family.

Monday, August 18, 2003 1:09 PM CDT

You all are probably wondering why we changed the background to a Halloween theme. Last night Mason had the most awesome Halloween party!!!!! He has been wanting this Halloween party even though it's not Halloween and Karen Luethner and Linda McGarvey wanted to make that happen for him. I'm sure glad they did. Our patio was full of Halloween decorations, including lights, pumpkins, everything you could think of that's halloweenish. What a great night we all had. There were about 45 people there.
Thanks everyone for making it happen for Mason. He woke from a 2 hour nap to see 45 people there for just him.

I will write more later, for we are at Children's for transfusions. He is not liking it here so we searched for the psychologist to come and talk to him. Adam and I are in the computer room. Zach stayed home with Janice, Marco, Christina, Fr. Ed, Joanne and Jim.

Just checked on Mason. They have tried to convince him to wear this patch which would be in place of the morphine I give him often at home. Even though it doesn't hurt him in anyway he refuses to wear it. Seeing him in pain has been so exhausting and so very hard. Our main goal is to see him comfortable and not in any pain throughout these days. He is so very very mad. I sleep next to him every night and wake every morning envisioning him some day soon not being there next to me when I wake. The loneliness that I will feel! Not to mention the boys. I feel so selfish feeling that way. How do we go on?

I have so many wonderful people to thank but can't begin to mention them all. My family has been so helpful especially these last few days. They don't want us to be alone. Thanks to all the people in the community bringing over food, etc.

I don't know how long Mason will be with us yet but I want to enjoy every moment with him. He has been my rock for 6 years. Oh, how I love him!

Much love and thanks to you all,
Sandy

Wednesday, August 13, 2003 12:29 AM CDT

Hopefully after today Mason will be able to get transfusions at Ridgeview in Waconia. Mason's primary nurse here at Children's has been busy trying to locate a hospice program for us.

Monday we came here for the mylartarg drug and a double dose of platelets. Janice and Jonathon came with us. It was another long day. It was so good to have them with us. Jonathon and Mason played on the playstation most the time. We are so grateful for the Vouk family (not to mention others).

The boys have been at Camp Courage since Sunday. We'll pick them up Friday. It's so quiet at home. I miss them but it's great to spend one on one time with Mason. Yesterday Mason's friend Nick DeNomme went with us to the Lester Prairie pool. We met the Morrow's, Vouk's, Louma's and Nolan's there. Mason swam! He was so excited to go swimming and he swam hard for about an hour then he wanted to go. What a great feeling it was for me to see him do what he so much likes to do and hasn't been able to for so long. Dr. O'Leary thought that would be Ok if he really wanted to swim. We need to do what he wants to do.

After Dr. Steve examined Mason today in clinic he noticed his gums were bruised and very swollen. He said that is luekemia built up in his mouth. I have had to give him morphine these last couple days for the pain.

We have said "good-bye" to so many wonderful people here at Children's. Everyone here has been so great to Mason and our family. We are so priviledged especially to have had Dr. Steve as Mason's primary doctor. He is THE best! We will miss everyone! I think I will miss them more than Mason. Mason is just so very tired of everything that has been done to him. He is so amazing! Why does this have to happen to the most precious people in our lives? I don't know what the days will bring. I just want Mason to have as much peace and happiness he can possible have. He soooooo deserves that!

My good friend Joy Bolea is coming over tonight. We have wanted to see her for so long but so much has been happening lately. Mason will spend some time at Jonathon's tomorrow - his special best friend. Joy is a nurse. I am so fortunate to have her as a friend. I need to do some things with my family tomorrow. Some really hard things we will be talking about. It is so comforting to know that Joy and of course Janice are there to take care of Mason so I can get do some of these things. Mason so enjoys spending time with Jonathon and his family. Mrs. Sexton (Mason's kindergarten teacher) hopes to get together with them too tomorrow. So comforting knowing he is in such good hands! I am so grateful for all of you!

Love,
Sandy

Wednesday, August 6, 2003 6:40 PM CDT

I'm gonna write this in sections cuz I know the boys'll need me outside in a bit. Zach has a friend over and they are having a squirt gun fight. They all know Mason can't get too wet.

Today was our 1st day being home together for over a week. Mason and I got out of the hospital Saturday morning finally. We drove to Willmar where Zach and Adam had been for a week at my sisters. Jim and Joanne were there too. We all had a good time all together. The cousins spent a great week hanging out and playing. Sunday night the boys and I drove to Wassie. Before we went to Wassie our good friends Pat and Joe Motzko arranged for Mason to receive incredible prayers from so many wonderful people at Assembly of God in Delano. What an uplifting experience of hope and faith. We felt so empowered by the spirit of God that night. Even Zach told me later "mom I think God was there with us when we all prayed over Mason".

Monday morning Mason was put to sleep for a biopsy and chemo injection in his spine. The result was 66eukemia in his marrow yet but his spinal fluid is clear of leukemia. After being in short stay for a few hours we went to the 4th floor oncology clinic for the mylatarg drug again. Last week he received in on 8th floor and we stayed over night. They thought after this dose he could go home. He has done OK with the last dose. Monday night he did throw up a few times. Thank God his NG tube didn't come up too. Tuesday he had a low grade fever but not high enough to go to Children's. Today he is feeling relatively OK except for some butt pain. We don't know what that is all about but tomorrow we go in for counts so they'll take a look at that.

Last night Zach and Adam wanted a friend overnight. I didn't think twice about it until later. Mason had a low grade fever before bed time. Then, I thought what am I doing cuz if Mason gets a fever of 101.5 or higher he'll have to go in - even in the middle of the night. He did OK through the night - thank God!.

Mason spent a few hours at Motzko's on Tuesday cuz I had to bring Zach and Adam in to the clinic for a mantoux shot. It is required to go to Camp Courage next week. They weren't too happy with me. Mason had a great time at Motzko's of course. They have been such a great support throughout all this.

Thursday - at Children's

We are now at Children's. His counts are so low right now. His hemoglobin was at 6.0. It's never been that low which explains why he feels so terrible. He's complained of headaches all morning. His platelet count is at 1,000. That too has never been that low. We'll have to come back here on Saturday morning and he'll probably need more transfusions. Right now he's getting blood and platelets. No one knows how Mason really feels. He is quite angry about being here so often. We are discussing homecare for him. With his counts so low he can get an infection very easily. My house is so very unorganized these days with bags never unpacked from the hospital stays, clothes cleaned but not put away, medical supplies, not to mention toys all over. I need to tell myself that's OK. But it's hard. All that really matters right now with the house is that it is clean and disinfected. Seems like that's all I do all day when we are home is clean so that Mason stays germ-free.

Zach and Adam are quite bored these days cuz we really can't go out and about. They haven't had summer fun except for being at friends and with family. Next week I know they'll enjoy many activities at camp.

Talking to Dr. Bruce today I asked him how much time Mason may have with us. Initially, Dr. Steve thought Thanksgiving or maybe Christmas. Because Mason's counts are decreasing so rapidly he thought sooner. I can't imagine our lives without this amazing child. How do we go on? I don't know what to expect these last days of his life. I'll I can do for Mason is pray. The only positive thing I can think of is that he'll soon be with grandpa Gene, his great grandmas and grandpas, cousin Scotty, cousin Angel, uncle Leo and so many other loved ones we so desperately miss. There are so many memories of Mason surrounding us. I look around the house at all his toys, pictures, clothes and pets. How do we go on?

Love,
Sandy

Wednesday, August 6, 2003 6:40 PM CDT

I'm gonna write this in sections cuz I know the boys'll need me outside in a bit. Zach has a friend over and they are having a squirt gun fight. They all know Mason can't get too wet.

Today was our 1st day being home together for over a week. Mason and I got out of the hospital Saturday morning finally. We drove to Willmar where Zach and Adam had been for a week at my sisters. Jim and Joanne were there too. We all had a good time all together. The cousins spent a great week hanging out and playing. Sunday night the boys and I drove to Wassie. Before we went to Wassie our good friends Pat and Joe Motzko arranged for Mason to receive incredible prayers from so many wonderful people at Assembly of God in Delano. What an uplifting experience of hope and faith. We felt so empowered by the spirit of God that night. Even Zach told me later "mom I think God was there with us when we all prayed over Mason".

Monday morning Mason was put to sleep for a biopsy and chemo injection in his spine. The result was 66eukemia in his marrow yet but his spinal fluid is clear of leukemia. After being in short stay for a few hours we went to the 4th floor oncology clinic for the mylatarg drug again. Last week he received in on 8th floor and we stayed over night. They thought after this dose he could go home. He has done OK with the last dose. Monday night he did throw up a few times. Thank God his NG tube didn't come up too. Tuesday he had a low grade fever but not high enough to go to Children's. Today he is feeling relatively OK except for some butt pain. We don't know what that is all about but tomorrow we go in for counts so they'll take a look at that.

Last night Zach and Adam wanted a friend overnight. I didn't think twice about it until later. Mason had a low grade fever before bed time. Then, I thought what am I doing cuz if Mason gets a fever of 101.5 or higher he'll have to go in - even in the middle of the night. He did OK through the night - thank God!.

Mason spent a few hours at Motzko's on Tuesday cuz I had to bring Zach and Adam in to the clinic for a mantoux shot. It is required to go to Camp Courage next week. They weren't too happy with me. Mason had a great time at Motzko's of course. They have been such a great support throughout all this.

Thursday - at Children's

We are now at Children's. His counts are so low right now. His hemoglobin was at 6.0. It's never been that low which explains why he feels so terrible. He's complained of headaches all morning. His platelet count is at 1,000. That too has never been that low. We'll have to come back here on Saturday morning and he'll probably need more transfusions. Right now he's getting blood and platelets. No one knows how Mason really feels. He is quite angry about being here so often. We are discussing homecare for him. With his counts so low he can get an infection very easily. My house is so very unorganized these days with bags never unpacked from the hospital stays, clothes cleaned but not put away, medical supplies, not to mention toys all over. I need to tell myself that's OK. But it's hard. All that really matters right now with the house is that it is clean and disinfected. Seems like that's all I do all day when we are home is clean so that Mason stays germ-free.

Zach and Adam are quite bored these days cuz we really can't go out and about. They haven't had summer fun except for being at friends and with family. Next week I know they'll enjoy many activities at camp.

Talking to Dr. Bruce today I asked him how much time Mason may have with us. Initially, Dr. Steve thought Thanksgiving or maybe Christmas. Because Mason's counts are decreasing so rapidly he thought sooner. I can't imagine our lives without this amazing child. How do we go on? I don't know what to expect these last days of his life. I'll I can do for Mason is pray. The only positive thing I can think of is that he'll soon be with grandpa Gene, his great grandmas and grandpas, cousin Scotty, cousin Angel, uncle Leo and so many other loved ones we so desperately miss. There are so many memories of Mason surrounding us. I look around the house at all his toys, pictures, clothes and pets. How do we go on?

Love,
Sandy

Friday, August 1, 2003 8:41 AM CDT

Well, we have been back here at Children's since Tuesday night. Mason and I were at home for about 5 hours on Tuesday then he got a fever so we ended up getting up to 8th floor at about 1 am.

We had a good time at home when we were home. Nick Denomme came over for a short time to play with Mason. Great friends Linda and Cheryl came and brought pizza and more Scooby Doo stuff for Mason. Their visit was so meaningful.
Mason wanted to call Jonathon and talk to him. It was at about 8:30 that they decided it would be fun to get together for an over night. Jonathon was over for about 1 hour when I noticed Mason wasn't looking or feeling good. I took his temp and it read 101.4. I felt so bad for both Jonathon and Mason. They looked forward to being together. Mason definitely didn't want to go back to the hospital.

Jonathon was so sweet and understanding Tuesday night when we brought him home. He said to me "it's not fair that Mason has to go through this 3 times - that leukemia stuff is bad." He looked just as sad as Mason that night. Mason is so fortunate to have Jonathon as his friend.

Wednesday I think I slept more than Mason. He continued to have a temp off and on until Wednesday night. We thought we'd be able to go home today but because they had him on 3 antibiotics we have to wait until tomorrow morning. I'll have to give him 1 anitbiotic at home through his hickmann plus he'll have more oral med's to take. The oral med's haven't been going too well here but the psychologist put together some guidelines with Mason. If he goes 3 days without any stalling he'll be able to be on the Wishing Well show next week here at the hospital. He thought that would be pretty cool.

My sister, Janice came up yesterday with Marco, Christina, Zach and Adam. She has had the boys since Sunday. They have been having a great time. Mason was so happy to see them yesterday. Thanks Jan and Enrique for your help with Zach and Adam. It is so comforting to have them with you and your family.

Sunday we'll be back here for hopefully only a couple days. Mason will have a spinal tap and injection of chemo in his spine again. We are hoping for a low percentage of leukemia in his marrow.

One place we were considering for treatment was Parker-Hughes Institute in Roseville. They finally got Mason's medical records and called me. They said they wouldn't do anything different than what Children's is doing so we have to hope and prayer for a miracle.

My gracious cousin Randy has ties with the Twins. We hope to go to a home game soon to meet the Twins before the game and see one of their games. Mason sure would enjoy that.

I want to thank Bonnie DeNomme for cutting the lawn the other day. Bonnie you are such a great friend and so supportive! Also, thanks Deb Hangartner for the card and CD you sent. I find comfort in listening to the spiritual music and Mason is enjoying it too. My thank-you's could go on and on. Without my wonderful family I don't know how I would have survived this long.

Please pray that we will indeed leave here tomorrow and Mason will continue to feel as good as he can. Chemo sure does make a person feel different. Talking to other families here we all have concluded one thing "cancer sucks!". However, with support from each other and others dear to us it makes traveling this road easier.

Love,
Sandy

Tuesday, July 29, 2003 8:50 AM CDT

Mason and I had a pretty good night last night. He slept through the night and I woke only a couple times. I think we were both wiped-out from the long day yesterday.

We stayed at Wassie the night before. At 7:30 Mason was put to sleep and they gave him an injection of chemo in his spine. He then was admitted to 8th floor. At 2 he was given that miraculous drug - mylatarg. We suspected some kind of reaction to it but there was none. Talking about it with nurses, it may be that now he has yet another blood type - Adam's. Before when he got it he had Zach's blood type. So throughout his 6 years of life he has had 3 different blood types. He may have reacted back in December to the drug and not this time because his blood type has changed. We can only wonder.

I have some great pictures I will post soon of Mason's great day on Sunday. Fr. Ed gave Mason his first communion, sacrament of the sick and he was confirmed. Godfather Jim was his sponsor. That day he started to loss his hair again. Yesterday Kenny on 8th floor gave Mason a haircut. His beautiful curls are gone again.

I am going to continue writing later cuz I need to check on Mason and see when Dr. Steve is coming in. We may go home today.

Yes, we are going home today. We will come back on Monday morning for another chemo injection in his spine and a spinal tap to see how well the mylatarg drug worked. Chances are he'll be admitted again after that for another dose of mylatarg.

Please continue to pray. Thanks for the many great messages on the website. They are much needed. You are all great prayer warriors. May God be with all of you.

Our love always,
The Jergens

Friday, July 25, 2003 2:18 PM CDT

We've been here at Children's for a couple hours now. I knew I needed to get to the computer and update all of you. I barely have strength to write the recent news.

Biopsy results from Wednesday have left us with even less hope and more frustration. I can't understand how my amazing little guy who feels so good and looks so good can be so sick. He shows absolutely no signs of being so sick. I must ask him 10/day "how do ya feel?" Every response is "good mom, why?"

78% is the number now in his marrow. He had a spinal tap Wednesday too and they found leukemia in his spinal fluid. This was never the case before - in the last 2 years it was never in his spine. This tells us it has progressed so fast.

Mason's platelets are at 4,000 - lowest it's ever been. His hemoglobin is 7.2 again but Dr. Steve said Monday he can get blood when he goes in for an injection of chemo in his spine. We had 2 options. Mason, Zach, Adama and I sat in with Dr. Steve to hear those options.

1st option was to go to the U for chemo followed by them taking my blood and infusing lymphocytes to Mason. That would require 1 month or so at Fairview. This option is another phase 1 drug study that's only been open for adults and Mason would be the only child to go through this study. It would also mean he'd need a shot under his skin 1/day for 14 days at home. Statistics haven't been good with this study and it is still very new.

Option #2 is to be at Children's where he'd receive the drug mylatarg again. This drug was the drug that got him in remission prior to going to the U for the 2nd bmt. If we chose this option we'd be in the hospital for a few days only.

Mason had some very intelligent ?'s for Dr. Steve. "will I be asleep when I die?" "What is the chance of my leukemia going away?" Answer to the last was "not very good". Dr. Steve told us Mason may be with us till Thanksgiving - maybe Xmas. I find this so hard to write and so hard to understand.

I can't imagine my life without Mason. He is my best friend. We have been inseparable since his first day of life. His love, hugs, kisses, touches, jokes, one liners and just his presence are so much of part of our every day. Our lives will never be the same. How do we go on without him? A part of all of us is being taken away - forever! We only will have the great memories of him - which are quite incredible. I don't know what to expect this next 2-4 months. He's so active now but that will not last. We want to do so much with him but that will be limited as time goes by.

He has always been a people person and I know he'd love seeing many of you. His friends from school have been so important to him even though he only had 3 months of kindergarten. We will let everyone know when he's up for visitors once we're home from Children's.

God bless you all,
Sandy

Tuesday, July 22, 2003 11:53 AM CDT

The boys and I stayed at Wassie last night cuz Mason had a biopsy scheduled for 7:30 this morning. We enjoyed a day at French park and then hung out at Kelsy Corner (Wassie's Cancer Kids Fund room). We woke early and came to short stay where Dr. Steve met with us before leaving for St. Paul for the day. The boys and I got a snack on 8th floor and came down to where Mason was ready to be put to sleep. I left the room for a couple minutes, came back and noticed Mason had had a bite of Adam's cookie. Because he ate they weren't able to do the biopsy so now we have to come back in the morning again. Right now we are waiting for blood to come. His hemoglobin was at 7.2 so he needs a blood transfusion. His platelets were at 7,000 so they gave him a platelet transfusion already. It'll be a long day here again.

All his other counts are quite low so now he needs to wear the mask again. His ANC is at 80 which is very low. The psychologist here at Children's met with him and they tried to figure out what he needs to do when he is angry. He told her he is so very tired of this leukemia thing. We all don't blame him.

I'll try and update tomorrow about the test results. I hope it won't be another long day here tomorrow.

Blessings,
Sandy

Sunday, July 20, 2003 7:36 PM CDT

I apologize for not updating sooner but my internet service wasn't working. This last week has been busy with calling hospitals, talking to doctors, going to the clinic and still trying to have a few days of fun with the boys.

The new picture is one of my favorite of the 3 boys when they were younger. Mason, I think was about 2 at the time. As you can see his hair before chemo treatments was straight and blonde. I tell him every day how I adore his beautiful curly hair. I think he is proud of it too.

There aren't many developments to report. I've been on the internet every day searching for something. As of now nothing looks promising. Medical releases need to be signed to other hospitals until others can consider helping Mason. So far we are considering Parker Hughes in Roseville, St. Judes and the NCI is looking for other experimental drugs Mason may be elligible for in different states.

He started chemo as outpatient 2 weeks ago. I also give him an oral chemo drug 1/day at home. Vincristin is the chemo drug he gets at clinic IV form. Sides effects are jaw pain which he had the first week. He has shown doctors, nurses and many others his anger about all this. He's made it known to all of us that he does not want to be in the hospital. I hope we can honor his wish but if he developes a fever or infection he'll have to be in the hospital.

I am grateful for so many people's efforts in helping me find alternatives for Mason. I feel guilty not spending much time with the boys due to being on the phone, internet , saying the rosary and praying to the blessed saints.

A few days ago I received a long letter from the mom of 2 friends of mine. Laurie Pelkey recited a miraculous story to me about her near death experience. She prayed to all the Saints she felt would help her - St. Jude, St. Rita, St. Peregrine, St. Philomena. She beat her illness and believes prayer did it for her. She sent Mason medallions of all the saints. The boys and I pray to them nightly. My wonderful aunt, Joanne and I read about each saint the other day. Most are saints of the impossible. I was so touched by Laurie's letter. There are so many wonderful people in the world! God bless you Laurie, your letter was so inspiring and gave me an incredible feeling of hope. Cheryl and Linda - you have a gracious and loving mom. It doesn't surprise me because you two are so loving and gracious too.

Tuesday Mason has a biopsy early in the morning at Children's. We are hoping for a low percentage of leukemic cells in his marrow so he can go to the U for the DLI.

THere are so many prayer requests:


Pray that Mason continues to feel good throughout treatments.

That those leukemic cells are killed off by the chemo so he gets to the U for the donor lymphocyte infusion

That the rest of us stay strong for him

That he enjoys every moment of every day

Pray too to the blessed saints: St. Jude, St. Rita, St. Philomena and St. Peregrine.

We are so very grateful for all the wonderful friends and family helping us through these days. This last week the boys were thrilled to spend time at the Motzko's, Vouk's, Morrow's and DeNomme's, and also see their cousin's and uncle from Seattle.
I hope someday we can be on the other side and give back to all you.

We had a house guest this weekend - Sammy. Sammy is a cocker spaniel. Karen and Al let us have her for a while and the boys had so much fun with her. On the way home today Adam asked if next time we could bring over one of their deer.

Some of you were at the benefit for Mason days before his relapse. The news of his relapse has prevented me from sending out thank you's to all of those who helped and made it a fun day. Mason had a blast. It was so good to see him enjoy the mega party. We will not forget the day. This community is so great. Linda and Ginger did a great job putting it all together along with so many others I can't even begin to mention you all - but thanks!!!! I am glad the party was when it was and the news of Mason's relapse was after. I'm sure so many are shocked to have heard because Mason was (and still is) showing no signs of being sick.

We are so grateful for all the prayers from all of you. Please continue to pray. The boys are having a hard time with this of course too. I just got Zach to bed after having a long talk with him. He usually doesn't open up to me about things but tonight he really wanted to talk and I'm glad we did. He seems to hold a lot inside. He said he worries a lot and wants Mason around for a long time. At times it seems as though they forget about how sick Mason really is because they can really get in to it. Which is why I was surprised Zach said what he said. I told Zach that we need to make every moment with Mason the best we can because we don't know what God's plans are for him or us. That's why remember to love, laugh and thank God for those in our lives. It's hard to understand lifes lessions and hardships but for some reason those difficult times in our lives are handed to us and make us stronger. I know my faith gets stronger every day even though I am not understanding why this is happening to this loving precious child. God can and will get us through these extremely hard times. We just need to keep talking to Him, for He will never abandon us. His love for us is so very powerful.

Our love to all,
The Jergens

Tuesday, July 8, 2003 8:57 PM CDT

These last few days have been so very exhausting. Without all of you I don't think I'd get through each waking and sleeping hour. I find myself wanting to collapse at times and just give up but seeing and being with Mason gives me strength to keep going.

Mason had a regular weekly checkup up July 1st. Dr. Steve was suspicous of a few counts and leukemia blasts were present in his blood. Wed. he had a bone marrow biopsy to confirm the suspicions. My sister, Janice was so gracious to be with me throughout those days of meeting with doctors, social workers and chaplain. Dr. Steve went through the options with us. The most logical option was to go with the phase 1 experimental drug R115777. This drug is only available at certain times and in certain facilities. We thought it was our answer to prayers.

Yesterday Mason and I met with a doc at the U. We talked extensively and Mason's labs were taken. No one ever suspected he wouldn't be elligible for this drug. All his labs looked great last week. Yesterday's labs revealed that his AST liver reading was 41. FDA regulations require it to be 35 or below. I waited at home for the U to call back and let us know when to be back the next day to start treatment. Instead she called and said the FDA wouldn't allow Mason to receive this drug because of his high AST reading. She tried to get them to bend. After talking to all the doctors involved about this I was so angry and immediately got on the phone searching for answers. All doctors said his liver is really in good health and 41 really isn't a concerning number. It's political and to me so unethical!

Today was filled with researching every option and getting information from anyone I could think of. As of now I haven't got any answers just more question.

Tomorrow Mason and I go to Children's. There he'll get a chemo drug at clinic. This chemo drug should kill some of the leukemic cells. He'll need another dose next week and then our goal is to go to the U where he'll have a DLI. DLI is a donor lymphocyte infusion. They will take lymphocytes from Adam's peripheral blood, seperated cells and infuse in to Mason.

R115777 may still be an option but his AST must be 35 or below for 30 consecutive days. Chances of that happening are "a flip of a coin" Dr. W. said.

These days ahead of us need to be filled with only happiness, laughter, love and memories. Whatever Mason wants to do I will try to do for him.

Since Wednesday we have made memories, laughed, loved and been around great people. We so enjoyed a couple days down in the valley at Jim and Joannes where Janice, Enrique, Marco, Christine, Fr. Ed and the rest of us picked berries, had ATV rides, watched fireworks and just enjoyed being together. The boys needed to be all together and so enjoyed playing with their cousins. Another day we spent at Joanie, Brad and Landon Hayes with Karen. It was his first time trolling. We didn't catch any fish but that didn't matter. Mason has been over at Jonathon's often too. It's such a joy seeing those 2 together. They are best friends and have so much fun whatever they do. Yesterday he spent so time with Nicholas and Ashley DeNomme playing Yug-i-oh cards. Today I had lots of phone calls to make and Pat Motzko called and asked if Mason wanted to hang out with Adam, Anna and Hope. He's still talking about the day.

Everyone's messages, calls, prayers and support are so much appreciated and needed at this time. God bless all of you.

I have to believe there will be peace and happiness for Mason and all of us no matter what the future brings and no matter what God has in store. I ask God everyday to help me keep the faith.

Make the moments count,
Sandy

Thursday, July 3, 2003 5:30 PM CDT

As I lay in bed these last couple days I searched for words to write for this entry. I am unable to go in to detail at this time about Mason's condition but he has relasped and all we really can tell you now is that there is not much hope for my precious hero. Please pray - pray like mad!!!!!

Sandy

Thursday, June 19, 2003 2:00 PM CDT

We are at Children's for a checkup today. His labs came back. I thought he'd need blood (last week his hemoglobin was at 8.3 today it is at 7.8). At the U his perimeter is 8.0 so I assumed after getting his results back that we'd stay for a transfusion. Here they wait till he's at 7.0. That is quite a difference and concerns me a little but I have to trust there decision.

Yesterday after taking the boys and Zach's friend, Adam
fishing at Waconia, we got out some pictures. We came across some pictures that were taken at Thanksgiving (the day before we found out Mason relasped) and one particular picture of Kurt holding Mason while he put the angel on top of the tree. Hard to believe that was 7 months ago. That day he put the angel on the tree, began a new chapter in our lives. I will never forget driving to Children's that day. We thought it was a regular checkup and everything would be OK. Driving home was so hard. I often think of that day. We were all in disbelief. Mason has been through so much not once but twice! However, one would never know now because he seems like an ordinary kid. God has been so good to us! My faith in Him is so great!

While at the clinic today we finally got to meet a family from Chaska who have a girl that had ALL leukemia and went through a BMT in Sept of 2001. She was at the U shortly after Mason's first BMT. We both check each others websites. Lexi is doing great and looking great. While talking with her dad, he said he once pulled Lexi's feeding tube out while she was asleep. For a moment I thought that would be the thing to do. Mason really doesn't need that tube in anymore. However, I think we'll just wait until he's put to sleep during surgery.

We visited the 8th floor again and saw some nurses we haven't seen for a long time. I know I've said it before but this hospital is so great and comforting.

Next Wednesday Cancer Kids Fund is treating families to their annual Mississippi Cruise. We went last year and had a great time. The boys are looking forward to it.

Again thanks for checking up on Mason. I hope to see many of you at Mason's benefit on the 28th. Should be a fun time. We are so grateful for all the wonderful people who are helping in the event - especially Linda Poikonen and Ginger Dixon.

Blessings,
The Jergens

Friday, June 13, 2003 2:34 PM CDT

The morning has been busy with Zach going to swimming and getting things done at home so before we left to come to Children's I forgot to bring my new pictures I was gonna post on the website. Hopefully next week I'll remember them.

Mason had his blood taken again so we are waiting to see if he needs blood. If so, we'll be here for at least 4 more hours.

For quite sometime we'd been concerned with Mason's creatnine level. The CSA he's been taking elevates that level but now it's being tapered weekly. Next week will be the last week of it. Beside the CSA, the only other med he's taking is bactrium which he'll need to take for 1 year from transplant day. His appetite has been fairly good! I haven't had to hook him up to nightly tube feedings for quite sometime. So, we (doctors and I) think the tube should be taken out. We are also considering having his hickmann taken out and replaced with a port that is surgically placed under his skin in his chest. It only makes sense to have those 2 things done simultaneously. Even though the tube in his nose is easy to just pull out. It won't hurt but it is uncomfortable (Mason could tell you that since he has thrown them up numerous times). Last visit, Dr Steve tried to convince Mason to have the tube taken out but Mason wanted it left in. He will look so much more handsome without it and kids ask him all kinds of questions about it. He doesn't seem to mind the questions though. He talks pretty openly about it.

Mason's been enjoying his baseball games. He plays every Monday and Wednesday night. Zach has ball on Tuesdays and Thursdays. We are hoping that the tail-end of the summer we can enjoy going to the pool again. Adam should get his cast off in a month or so and hopefully by then Mason's hickmann will be out. Doctors say Mason can swim in pools but not in lakes. Other summers we'd go to the beach quite often.

I'd like to thank a dear friend of Kurt and mine for all his support and concern for our family - Dan Fair. Thanks Dan for all you have done for us. Your prayers and meetings with us are so much appreciated.

My thoughts and prayers continue to be with the Holt family from Buffalo. They lost a precious boy to Mason's same type of leukemia. I pray that God's strength be with their entire family. Being without their son Ryan has to be so difficult for all of them. Our prayers can only help them get through these days.

All our love,
The Jergens

Friday, June 13, 2003 2:34 PM CDT

The morning has been busy with Zach going to swimming and getting things done at home so before we left to come to Children's I forgot to bring my new pictures I was gonna post on the website. Hopefully next week I'll remember them.

Mason had his blood taken again so we are waiting to see if he needs blood. If so, we'll be here for at least 4 more hours.

For quite sometime we'd been concerned with Mason's creatnine level. The CSA he's been taking elevates that level but now it's being tapered weekly. Next week will be the last week of it. Beside the CSA, the only other med he's taking is bactrium which he'll need to take for 1 year from transplant day. His appetite has been fairly good! I haven't had to hook him up to nightly tube feedings for quite sometime. So, we (doctors and I) think the tube should be taken out. We are also considering having his hickmann taken out and replaced with a port that is surgically placed under his skin in his chest. It only makes sense to have those 2 things done simultaneously. Even though the tube in his nose is easy to just pull out. It won't hurt but it is uncomfortable (Mason could tell you that since he has thrown them up numerous times). Last visit, Dr Steve tried to convince Mason to have the tube taken out but Mason wanted it left in. He will look so much more handsome without it and kids ask him all kinds of questions about it. He doesn't seem to mind the questions though. He talks pretty openly about it.

Mason's been enjoying his baseball games. He plays every Monday and Wednesday night. Zach has ball on Tuesdays and Thursdays. We are hoping that the tail-end of the summer we can enjoy going to the pool again. Adam should get his cast off in a month or so and hopefully by then Mason's hickmann will be out. Doctors say Mason can swim in pools but not in lakes. Other summers we'd go to the beach quite often.

I'd like to thank a dear friend of Kurt and mine for all his support and concern for our family - Dan Fair. Thanks Dan for all you have done for us. Your prayers and meetings with us are so much appreciated.

My thoughts and prayers continue to be with the Holt family from Buffalo. They lost a precious boy to Mason's same type of leukemia. I pray that God's strength be with their entire family. Being without their son Ryan has to be so difficult for all of them. Our prayers can only help them get through these days.

All our love,
The Jergens

Tuesday, June 10, 2003 11:36 AM CDT

We are again at Children's today. Mason had his blood drawn and then we headed up to 8th floor to visit. Some good friends of ours from Watertown (Motzko's) have a nephew there. He wasn't in his room so we didn't get to see him. Mason spotted Dr. Steve right away. He checked to see if Mason's counts were back and told us they look pretty good but his hemoglobin was down from 9.7 to 8.5. I told him I'd feel more at ease to come back on Friday to get it rechecked. His perimeter is 8.o. Anything below that he'll need blood.

The boys are at the sibling play room while I am on the computer. They seems to enjoy going there playing outside and doing crafts.

Mason will be meeting with Mrs. Sexton tomorrow and Thursday. He has a great time with her. He says "its fun, not like at the hospital".

Not a whole much more to report this week. I will try and update again on Friday when we come back here. I have some new pictures I want to post.

Thanks for taking the time to check up on Mason. Your support is so much appreciated.

Love,
Sandy

Thursday, June 5, 2003 8:58 AM CDT

WBC 4100
Hemoglobin 9.7
Platelets 134,000
ANC 2747


This may not be the time for me to be sitting here updating the website for I have a very heavy heart. Occassionally I check other caringbridge websites of families like us who have a child with cancer (from Children's) or who have gone through a bone marrow transplant (Fairview U ). I was reading one particular website of a family from Buffalo who we didn't get to know well due to being in and out of Children's early this year. Their little boy, Ryan (only 3 years old) had AML like Mason. We expected them to follow us to the U for a bone marrow transplant but the doctors couldn't get him in remission and the leukemia took over. He passed away yesterday. Please pray for him and his family. Throughout the last 2 years I have been searching of understanding not only why Mason was chosen to get leukemia but why so many precious little one's are struck with cancer and other fatal illnesses. Many things have helped me throughout these years of Mason's journey: my faith in God, reading, positive people in our life and Mason. I have almost finished reading a book written by Rick Warren, "the Purpose Driven Life". He has a great way of trying to explain to his readers our real purpose on earth. Last night I came across a statement in the book that really hit home, "Your most effective ministry will come out of your deepest hurts". This is so very true. My deepest hurt will always be the many days I saw Mason suffering. I can't imagine my future life experiencing any deeper hurt than seeing Mason in pain. How this has so changed our lives and prospective of life!

Mason seems to be doing fairly well - as you can see by his blood counts. He's eating better and has more energy. Tonight was his 1st little league practice. He's quite the hitter! But, as he will tell you, "my legs just don't seem to move like they used to".

Over the weekend it was so good to see some old old friends - the Dressler's. I so enjoyed visiting with them and their spouses. Hard to believe that for 5 months I was in a different world being at hospitals. My whole life was (of course) centered on getting Mason better. Being back in the community has been much needed. I thank God for all the wonderful people in my life.

Keep the faith,
Sandy

Tuesday, May 27, 2003 10:52 AM CDT

What a great feeling to be here again - Children's in Mpls! After Mason had his labs drawn we went up to 8th floor to see some old familiar faces. Mason was surrounded with so many wonderful people (nurses, the chaplain, Dr. Steve and so many more) that were so happy to see him. One nurse even said "wow Mason you must feel like a movie star". We were hoping to see his buddy Kenny but he is off today so hopefully we'll see him on Friday. When visiting with a the chaplain and social worker we got to know well, Mason said "tell them mom". I didn't know what he meant until he whispered to me "tell them I don't have leukemia anymore". We sure missed everyone here.

We are waiting to get his lab results back. I am assuming he won't need blood today but I'd rather wait than have to return tomorrow so Mason is in the sibling play room and I thought I would use the computer, update the website and put new pictures in his photo album.

We all had a great weekend. Zach and Adam left to go camping with Kurt on Saturday with the intention of bringing Mason with but at the last minute he started vomiting continuously for over an hour. He didn't have a temp but he was shivering. Right away I called the fellow BMT on call. Her immediate thought was that he may have a GI infection. However, soon after he was back to normal and feeling good. My best friend Mel came over and we three visited Al and Karen. Mason had a great time playing ball with Al and his nephew Ben and taking rides on Al's four wheeler. In the morning Mason wanted to go camping so Mel and I drove to where they were and he spent the night at the camp ground. The boys had a great time and I was so glad I could spend time with Mel.

After leaving here today Mason and I are going to get some things for his birthday party on Saturday. His birthday is Friday. He wants to find a Scooby-Doo pinata for his party but I'm not sure if we'll find that.

Last week Mason met with his kindergarten teacher for over an hour. He was so excited to be with her again in a familiar school surrounding. Mrs. Sexton has offered to work with him over the summer. We are so very grateful to her. One day, out of the blue, Mason said to me "I really miss Mrs. Sexton". She has been a great teacher at Watertown-Mayer for so long. She is retiring this year and will be missed by so many.

Well, we should get back to clinic for his labs.

All our love,
The Jergens

Tuesday, May 20, 2003 6:53 AM CDT

Day +101

101 days ago was Mason's new birthday! Yesterday at clinic we were given the glorious news - NO LEUKEMIA!!! Praise God and all the angels above who have been with us through these difficult days - Grandpa Gene, Uncle Leo, cousin Angel, cousin Scotty, all Grandma's and Grandpa's and so many more. We've prayed to all of them in heaven to heal Mason and to keep him with us for many many more years. They have answered our prayers.

Mason's hemoglobin was 7.9 yesterday. We waited until 2:30 for his blood to come from the blood bank but couldn't wait longer due to having to get home for the boys. We will return again today to clinic for the transfusion.

The boys and I went out to our good friends Karen and Al's this last weekend. Thanks for the fun time! They have this peaceful beautiful place in the country with many different kinds of animals. The boys are still talking about all the deer, kittens, ducks, etc they saw - and of course the white baby deer. Mason now has quite the collection of deer antlers. We feel priviledged to have them in our lives.

Thursday marks the last day at Fairview BMT clinic. We will miss our primary doctor (Dr. Baker) and the many great nurses. However, Mason is looking forward to going back to Children's where he will be seeing Dr. Steve and nurse Sarah again.

Keep the faith,
Sandy

Friday, May 16, 2003 7:11 PM CDT

Day +97

Writing has always been therapeutic for me especially since this website was created. My personal journal (which I started before Christmas when Bonnie and Cheyenne gave me a beautiful book to write in) includes more emotion than I show in Mason's website. Today, however I feel the need to pour out some of my frustations felt yesterday at Fairview.

Since Mason's last update he has pretty much stopped eating. I had wrote about how great he was taking med's orally and that too has changed. Over the weekend we struggled with all his med's. It literally took all day to get him to take them. So, at our regular scheduled appointment on Monday I told him the tube needed to go back in. We got to clinic and he refused to leave the waiting room. One of the great nurses (Steve) was elected to carry him (against his will) in to the room for the procedure. It was heartbreaking seeing him in such an emotional state. We finally got it in and left to go home. Early that next morning he threw it up again. We went back to clinic that day and 3 nurses proceeded to put another one in but he immediately threw that one up too. So, Dr Amy decided to send us home without a tube and "just get in as many med's as you can". Yesterday he had his 100 day biopsy (early) so they figured they'd put an NG tube in instead of an NJ tube. An NJ tube is harder to throw up cuz it is threaded farther down his stomach.

So, Yesterday we went in early for labs followed by surgery. You'd think seeing him put to sleep would get easier after so many times but it never seems to. He was in OR for 3 hours. I was brought back to be with him in recovery and saw the new tube. As soon as I saw that tube (cumbersome and uncomfortable) in him I knew it wasn't right. They have 2 tubes they can put in - child or adult. He is a child obviously but when put in the end (coming out of his nose) was short and very noticeable - nothing like the others. I don't usually speak up unless something's really wrong. I wasn't happy and knew it would be a problem. The nurses tried everything to extend it. We did figure something out - after 3 extra hours being there but he still hates it. Even putting his mask on is a problem with that big tube stuck to his cheek. All they could say was that they could put him under again and put in a longer one. I don't want to resort to that so we are trying to adjust. It not only is harder for him and very uncomfortable for him but harder for me to administer his med's and hook him up to his food.

Sleeping last night was hard for he could not roll on the side where the tube in taped to his cheek. He continues to ask me why it turned out this way. I ask the same question.

Getting back labs yesterday we found out his creatine is still elevated so we have to hold back on taking the CSA again. Monday we go back to repeat labs so hopefully that will have gone down. We will go back to the U hopefully for just next week and then return to Childen's.

Some of you may have seen Mason on the front page of the Carver Cty News this week. He is pictured with his giant Scooby-Doo that was painted on his window when in the hospital. There will be a benefit on June 28th at the Middle School in Watertown. I will try and put that article in the photo section of this website soon.

For all you prayer warriors - please ask God to continue to be with Mason everyday and heal him in everyway. At times he seems like a normal kid - happy, playing, joking and of course loving but these last few days have been tough for him. He has gone through so much. It just never seems to end. Daily I ask God to give him everything he deserves plus more - a bright future filled with good health (first of all) and happiness.

Blessings,
Sandy

Saturday, May 10, 2003 5:28 PM CDT

Day +91

A week ago Dr. Baker gave us great news- Mason only needed to come to clinic 2/week. Well, the 2/week visit lead to 4/week this week. Monday was a regular scheduled visit that determined he needed blood the next day. We returned Tuesday for labs and blood. His labs revealed his creatnine level was elevated to 1.4 (normal for his age is .3 to .7). The med's he takes can increase this reading so they ordered to have us stop his CSA (a med that is used to prevent graft vs. host disease). until his labs were repeated again on Wed. While in clinic on Tuesday Mason felt nauseated and threw up his tube (AGAIN). I could feel the presence of God that day (amongst other days). You all may know how I dread taking that tube out when he throws it up. These last 2 times we have been at clinic. I have prayed to God asking Him first to not let this happen anymore and second, that if it does happen - please let it be at clinic. He answered one of my prayers. I'm able to handle it occurring at home but it's better at clinic - where the medical professionals are available to do the dirty work. I can still see Mason's little chin quivering. After it came out he looked at me and I could read his mind. We have lost count of the numerous times the tube was replaced. I don't know how it feels but I know it's not pleasant to have it put back in. I tried to keep Mason busy with homework and books. Shortly after the doctor came in and they decided to decrease the med's he takes earlier than day 100 just because they know how difficult it is to put the tube back in. So, they discontinued 4 of them and stopped the neoral (CSA). The thought of trying to get him to take the others orally was a concern but really he's been doing pretty good. Thursday we got the OK to begin the CSA again. He tried it in chocolate syrup but after 1 lick he refused to take the rest. I called the clinic and they suggested he try a generic brand that would taste a little better. I tried the CSA with chocolate syrup and it is sooooo awful!!!! I had an aftertaste for over an hour. I talked to Mason about how important it was to take it, how sorry I was that he had to take it and that I tried it and it really was bad but also gave him the option of either taking it or having the tube put back in.

That was on Friday and today he has been taking it like a champ. We got the generic brand - which isn't much better. His eating hasn't been as good as last week so if he doesn't start eating better the tube with still have to go back in for his tube feedings.

Adam's birthday is today. He had some friends over yesterday overnight. We went bowling. They all seemed to have a good time. Tomorrow we'll go to Grandma Dorothy's where Fr. Ed will have mass and we will celebrate Christina's, Adam's and Enrique's birthday along with Mother's day. We hope to get to Jim and Joanne's. We were there over Easter but since then they have permanently moved in to the house.

Next week Mason will have his 100 day biopsy. He will be in surgery on Thursday for the procedure. Please pray that God with be with him and all the wonderful medical staff at Fairview. I have no doubt that the result will be 100% donor/100% in remission. Prior to Thursday Mason will have numerous tests done to make sure his organs are all working OK. After day 100 (May 19th) we'll be back to Children's for follow-up care. We look forward to clinic visits with Dr. Steve.

Happy Mother's Day to all you mothers. Remember how precious your children are and to not miss a day saying "I love you" for you never know what tomorrow will bring.

The following is a quote sent to me by my aunt Sr. Miriam from St. Benedicts convent. It helped me get through a tough day :

"I wish for you..."

Comfort on difficult days,
smiles when sadness intrudes,
Rainbows to follow the clouds,
Laughter to kiss you lips,

Sunsets to warm your heart,
Gentle hugs when spirits sag,
Friendships to brighten your being,
Beauty for your eyes to see,

Confidence for when you doubt,
Faith so that you can believe,
Courage to know yourself,
Patience to accept the truth,
And love to complete your life.

Thanks Miriam for lifting me up on a day I needed it. Your kindness and care for all of us keeps us going and is so appreciated.

Thursday, May 1, 2003 12:06 AM CDT

Day +81

This week I have finally come to a point of total exhaustion. I wondered when we would get to this point. If only we could have a normal day of the kids going off to school, me going to work, coming home, making dinner, doing homework and just have some normal everyday routines. Hopefully this will be in our future.

Mason went to clinic yesterday. When he awoke he had a terrible headache and pain in his nose. After they took blood and while waiting for the doctor to come in he slept. When he woke up he said he needed his bowl. He threw up (he hadn't thrown up for a couple weeks). Of course the tube came up too. I ran to get a nurse. At least we were at the clinic at the time. He saw the Dr. Baker and he thought he may have a sinus infection. His counts were lower too which could be due to having an infection. They prescribed an antibiotic for him to take. When he said sinus infection I right away remembered the day he relapsed - he had a sinus infection then. I wanted to be assured there was no connection. All they could say was "we'll have to keep an eye on it". After visiting 4A after clinic one of the doctors there said they rarely see relapse this early after transplant. He is still looking good, eating good and has a great disposition.

Mason and I were on our way to the apartment Tuesday afternoon when I got a call from Theresa, the school nurse. Adam had fallen down at recess and she thought he needed x-rays. We brought him in and he did break his arm.
They put a temporary cast on. On Monday he'll need to be put to sleep and have it reset with a permanent cast on.

Adam stayed with Mason and me at the apartment the last couple days. We are at Children's right now and headed home. Tomorrow Mason needs to go back to clinic. His creatine level was higher than they want it to be so they increased his fluids at night and stopped the neoral drug I give him 2/day.

It has been nice having Adam hang out with us these last couple days. He'll be limited to many activities for about 8 weeks so there goes baseball and swimming (WASK). Oh well, it could be worse.

Please continue to pray for Mason. Pray that his body fights off any infections and that his counts go back up.


Our love to you all,
Sandy

PS. Great porkchops Darren!

Thursday, April 24, 2003 12:18 AM CDT

Day +74

Sorry no new pictures - hopefully next week after I get our film developed from Easter. I know we'll have some great pictures to post from being together at Fr. Ed's.

Just got back from clinic. During the 15 minutes of freedom I get when we go to clinic (because Mason meets with his teacher while waiting for counts to come back) I ventured to the hospital for coffee. Being back at the hospital brought back mixed memories of the 40 days Mason was there. My thoughts were mostly of the 2 week period when he was so very sick. Hard to believe that was only 2 months ago. That little body has endured so much. I still believe God (with all your prayers too) pulled him through all the major complications he had even our struggle at Children's when the chemotherapy he had been given didn't get him in remission. Without the new drug (mylatarg) where would he be today?

Mason's transfusions have become reduced to one every 3 weeks. He is making his own platelets. Or, I should say Adam's marrow is making Mason's platelets. He is basically only needing blood transfusions. Mason's 60 day DNA test result came back 100% donor!

During our visit with Dr. Baker today I finally asked that one dreaded question that has been in my mind for months. Can one ever receive a 3rd bone marrow transplant? The answer is "no". After all the chemo and radiation a cancer patient goes through after 2 bone marrow transplants the body cannot tolerate anymore. Although as years go by new developments, studies and research are always being done. I asked Dr. Baker how many he sees that go through 2 bone marrow transplants. He said 3-4/year. I still am putting Mason in the hands of God. He has done a great job so far I believe He will continue his mission in healing him.

Being with family during Easter was very uplifting. The boys and I finally got to see Jim and Joanne's new house, visited my mom and spent the night and Sunday morning at Fr. Ed's. We are so excited for Jim and Joanne. There home has a gorgeous view of the valley and is so beautiful. We look forward to visiting them this summer. Before you know it it'll be berry picking season down in the valley. We all enjoyed attending Easter vigil mass at Fr. Ed's. His masses are so meaningful not to mention his homilies. The boys had a great time playing with Marco and Christina, coloring easter eggs and just being together. We celebrated Marco's 13th birthday and Zach's 11th birthday. We have missed being together with my family. I couldn't ask for a more caring, loving family. I thank God every day for all of them.

Since Mason and I are home more now, we are enjoying playing ball outside with Zach and Adam, doing homework together and having some normal routines. Mason has had some good times playing with Jonathon. Yesterday he spent most of the day at his house. They went to the park. I called to check on him and Janice (Jonathon's mom) said he was sleeping. He still gets tired easily. However, he is eating like mad! We have been having breakfast often at Ruby's restaurant in Watertown. Linda (the owner) makes the best french toast in the county. I can't believe his appetite. Praise God!!!

I feel so priviledge to have such positive wonderful people in my life. All the wonderful meals we all have enjoyed from so many, phone calls, cards are so overwhelming. I hope someday we can be on the other side and give back to all of you. Mrs. Sexton gave Mason an Easter basket, books and toys. She is so caring and thoughtful.

Some moms from the community have offered to put on a fund raiser for Mason in June. Linda Poikonen (a very active, busy mom from Watertown) called me and said they all want to put something together at the Middle School. I will give details of the event when I know more.

Mason keeps asking me "when are we leaving". I wanted to finish the update since my computer is here at the apartment and we probably won't be back for a few days.

Love and blessings to all,
Sandy

Sunday, April 13, 2003 7:15 PM CDT

Day +63

It's been hard to find the time to get to the computer during these beautiful days! Wish I could say Mason has enjoyed the warm weather and has been playing outside a lot but he hasn't.

I have this mother instinct lately. I know him better than anyone. He hasn't been himself. He hasn't been complaining of any pain (except when he feels like he is going to throw up) but he is aweful quiet. He continues to make me laugh but not as often. I can tell he doesn't have much energy to even walk sometimes. It worries me! After first tranplant he was back to running around in a short time. He is napping a lot lately too - unusual for him. I keep telling myself he just needs more time this time around. I hope this is the case. His blood counts continue to come back good. He may need a blood transfusion tomorrow - his hemoglobin was 8.8 on Thursday.



Last week Monday and early Wednesday morning he threw up his tube. I felt so bad for him. He knew both those times he needed to have it replaced. It only takes seconds for them to replace it. It's the anticipation of having it put in that is hard.

We spent some days at home. Friday we enjoyed a visit to the school. We knew when his class was going to be out for recess so we planned to go then. After recess we were invited in for some play time with the kids. Mrs. Sexton is so loved by her students. She will be missed by many (this is her last year teaching).

Friday night was the school's annual carnival. At first we planned to only have Mason ride on the ponies outside the school but it was like bringing a kid to a candy store and not buying him candy cuz he saw a lot of his friends go in the school to win prizes at all the games they had. We made sure he washed his hands especially good and he wore his mask. He wasn't there too long. Of course he didn't want to leave.

He still isn't eating much of anything. He hates having to carrying the backpack around (his peptimin junior that goes through his NG tube). Knowing the packback will go away is not incentive enough to eat. He tries to eat but still nothing tastes good. We go through over a case of the formula each week. Because he isn't drinking much during the day, he is also hooked up to IV fluids at night. It'll be a glorious day when we won't have to carry 2 backpacks to the bathroom with us at night.

It was good to be home - especially being it has been so nice out. The boys now have clean summer clothes to wear. We got out the packed away summer clothes, washed and hung em' out on the line. It felt good to put away all the winter clothes - hope I didn't "jump the gun".

I was saddened to hear that our priest at St. Mary's is leaving. He has done a great job the years he has been with us. He will be missed by many. Zach, Adam and I went to Palm Sunday mass at St. Mary's today. It felt good to be back in our little church again.

Please pray that we begin to see the energy return in Mason, that he starts to eat and drink more and that he continues to stay "cancer free" .

A Blessed and Happy Easter to all of you!

Love,
Sandy

Monday, April 7, 2003 6:03 PM CDT

Day +57

WBC 4200
Hemoglobin 8.9
Platelets 104,000

Mason's counts are looking good as you can see. Looking at his hemoglobin count, he may need blood on Thursday (our next clinic visit).

We were at clinic twice today. One visit was a scheduled appointment this morning. The other unexpected visit was this afternoon to have his feeding tube replaced. At 8 am, 12 pm, 4 pm and 8 pm he gets medicine through his feeding tube. Usually he gets 7 or 8 syringes each time. When I administer the med's he drinks coke so he doesn't feel the medicine go through his tube. Today had been a "stalling day". Lately he has been doing great with just getting it over with but today he's been throwing up a lot. Well, at 12 after I got the last med down he threw up - tube and all. If you can recall from another entry at the hospital, he did the same thing but the nurse pulled it out. No nurse around this time. It wasn't fun to pull the tube out to say the least. Immediately he knew he'd have to have it replaced. I called the clinic and they said to come right in. As much as he hates the procedure, he did really pretty good.

First clinic visit today the doc's all checked out the rash he has. All of them don't think it's Graft vs Host disease but can't say for sure. It usually presents itself as a little bit red. This rash is really just goose bumps all over his body. His back is the worst. It almost feels like sand paper when I rub his back. If it is GVH they will increase his CSA (the neoral drug he gets). You know when that drug is working when the hair starts to turn dark. Some kids have lots of dark facial hair and hair on their arms. Lately we have noticed Mason's eyebrows getting quite dark. He always had light hair so this will be a change. After he is off the CSA it'll get lighter. But that's not till day 100. The hair on his head is starting to grow too and that's dark.

Now for some positive events. Last week Mason enjoyed part of a day with his best buddy, Jonathon. He had a great time. They were busy with collecting rocks among other boy things. That same day we enjoyed a great meal from the Bolea family. We also enjoyed Sean Bolea (Mason's friend) visit for a couple hours. That day was Mason's first normal playday in many months. Before falling asleep that night he said "I had a great day!". I was able to do some normal day activities too that day. It felt good!

We even snuck home for a day this weekend. The boys enjoyed playing ball outside, watching "Master of Disguise" and playing Uh-Gi-OH cards.

Last week my best friend Lori McGuire came for a visit. Mason had a great time playing "Connect Four" with her. She watched Mason for a while while I I did some errands.

Prayer requests are as follows: we hope that the rash he has is really GVH, that he starts eating and drinking again, the vomiting stops and that he continues to be the happy, joking, strong 5 year old that he is.

With Easter days away, we must remember Jesus. His dying for us on the cross and his resurrection. He saved us and continues to save us. I realize that more now than ever. I know he saved Mason (with help from all of you). He continues to heal him. With his love and healing I pray my family will (among other families needing his love and healing) also heal in many ways. We have been torn apart throughout these months, in many ways. It has been considerably hard for each and every one of us. I try to remember the saying that " God only gives us as much as we can handle".

All of our love,
Sandy and Mason

Wednesday, April 2, 2003 8:07 AM CST

Day +53

We haven't been to the clinic since Monday but I know his counts were great cuz they said we didn't have to come back until Thursday. Dr. Baker thinks he is making his own platelets now because his platelet count is going up slowing without transfusions.

If you click on the photo album you will probably not know the people. I don't know how that happened or who they are. I went to Children's yesterday to scan some pictures to put on his website. I know the pictures I scanned ended up on the disk I installed but somehow I ended up with a couple and their baby I've never seen before. I even tried to delete them but that didn't work either. Hopefully by Friday I'll have the new pictures up.

Mason and I are going home today. He is having a play day with Jonathon. Doctors are OK with it but we won't make a habit of it. Mason is so excited. I will be cleaning while he is at the Vouk's. Hopefully the weather will stay dry so I can hang some clothes on the line. I miss that!

Not a whole lot to report about Mason. He continues to improve and has no signs of Graft vs. Host disease. Last visit with Dr. Baker he said he really would like to see the GVH this time around so he may decrease the neoral drug he gets 2/day. Decreasing this medicine may cause him to get a rash - they hope will be a sign of "a little" GVH.

Last night Mason and I went to my cousin Randy's place. We enjoyed great company and a great piece of banana cream pie. Randy's grandson, Trystan entertaining all of us with his energy. Thanks Mel, Ryan, Ron, Nicole, Randy, Kathy and Harry for the Creative Memory items. I will have a great time with it.

Please continue to pray that any infections/fevers stay away. Sounds funny to ask that you prayer Mason gets Graft vs. Host disease but I have been asking God to give him just a little bit since the doctors believe it will help his body accept Adam's marrow.

Blessings and peace to all,
Sandy and Mason

Wednesday, March 26, 2003 7:52 PM CST

Day +47
Check out the counts:

White blood count: 7100 (5,000 to 17,500 is normal)
Platelets: 86,000 (150,000 to 450,000 is normal) so we're getting there!
ANC: 5,500 (800 to 7,700 is normal range) absolute neutrophil count is the differential and tells us how many cells are there to fight off infection/colds, etc.

Monday we went in to clinic after having the weekend off. His counts revealed that he needed blood. His hemoglobin was below 8.0. When we were in the hospital I never paid any attention to how long it took for the blood to go in to him. It took 2 1/2 hours. We went to clinic early in the morning and found out he needed blood. They needed to order it so we came back early afternoon. So, half our day was being at clinic - playing cards, reading books, coloring, watching the cartoon network and Mason's teacher came to work with him for 1/2 hour. The Friday before he needed platelets so we were at clinic that day for quite a while also.

We did have yesterday off from clinic. We spent our day doing a lot of walking and enjoying the beautiful weather. I took Mason, Adam and Zach to Coffman Union Monday night and they thought the place was pretty cool so Mason asks to go there everyday now - he calls it Coffee Union.

Mason is still not eating much so I have to fill up his tube feeding every 5 hours with a new can of peptiman junior and add a teaspoon of fiber. He still has a bit of pain in his tummy but it seems to have decreased. During the night I still hook him up to IV fluids (12 hours) so he gets enough fluid. He really isn't drinking much. His medicine is actually going pretty well. He doesn't fight me as much as in the beginning. I am very proud of him and his overall attitude. I know he misses home, school, friends, pets, his own bed and brothers but he has adjusted great. He just goes with it all. He doesn't complain except for the pain he has in his stomach once in a while. I'll say it again - he is remarkable.

Today we woke up and immediately he said "I can't wait to see Marco, Christina, Jim and Joanne". They have been on his mind ever since I told him they were coming to visit. We had a nice time with all of them. Marco, Christina and Mason are all in to Yu-Gi-Oh cards so they played a lot - although Mason doesn't know all the rules of the game. Jimmy joined in and they all played "war" too. It was a relaxing day with much needed great company around us.

Tomorrow Janice and Enrique will come to visit too. Willmar has Spring break this week. They have been spending time with Jim and Joanne and helping them pack up for the big move coming up (their new home). We are so excited for them!

Zach's birthday is on Sunday. We hope to be together for part of the weekend. Hope the weather is OK.

I did add a couple new photos - I hope you are able to view them. I had some trouble with it.

You all have done a wonderful job praying for Mason over these last few months. Don't stop! We all know that our attention now (today) must also be on praying for peace. Watching the war coverage daily has been hard especially after going through so much with Mason. It doesn't make sense! Life is such a precious gift from God. May God continue to be with our people at war and spare the lives of the innocent people.

Peace to all,
Sandy

Friday, March 21, 2003 7:19 PM CST

Day +43
White blood count 3900
ANC 2900
Platelets (unknown cuz he just had a transfusion in clinic
today)

Things are looking GOOD! Mason was discharged from the hospital on Tuesday. I hadn't been able to update his website cuz I hadn't had my computer set up at the apartment until tonight. We have had fairly good nights here aside from night no. 1 due to his 2 pumps going off often during the night. Since then I have learned some things to avoid the "beeps in the night".

Today was a long clinic visit because his platelets were below 40,000. His perimeter is 40,000 so when he is below that he needs a transfusion. His teacher came by and worked with him work 1/2 hour but the other time we played cards and read books. He kept asking "when can we leave". I was getting impatient too but tried not to show it.

The DNA test finally came back. On day 28 they took blood and sent it away for testing. It revealed that the marrow is 100% donor marrow (Adam's marrow). That was our hope, of course. God has answered our prayers - AGAIN! He will not have another such test until day 100. At day 100 he'll have a bone marrow biopsy and spinal tap. Until then we need to ask God to help him with his medicine. The medicine does end up getting in him but some days I feel that is all I do is sit in front of him with the med's trying to persuade him to take it. I now have every form of every med (There are 8 of them which he takes 4 times a day). Some days he'll want to swallow them even though it takes hours sometime and somedays he'll be OK with them going through his NG tube.

Mason and I are praying for nicer weather. We have been walking to the clinic everyday but have to bundle up for those walks. Lately our adventures include feeding the squirrels peanuts. There are lots of squirrels around the hospital/clinic and they are quite tame. Today is the first day of Spring. We want sunshine and warmer weather to be able to go to the playground, have a picnic near the lake or walk the Mississippi. We did walk to Blockbuster tonight to get a couple movies. The doc's say he can enter stores if they are not too crowded. Of course when we return the first thing we do is wash hands!


Last week when I went home for a day the boys and I enjoyed a beautiful night on the patio and had a little fire going in our fireplace. My good friend Janice Vouk was so thoughtful when she brought over dinner she included everything needed to make s'mores. It was a great treat! We sure enjoyed our desert that night along with everything else she brought. She is a very caring and thoughtful friend.

Please pray for not only Mason but also his brothers. There lives have changed so throughout the months and I think are beginning to feel some emptiness. I know I am. I miss them sooo much and so does Mason. We may not see them this weekend because Adam has been home from school sick so it'll be another week until we are together.

Mason and I look forward to my family visiting soon and also a visit to cousin Randy's. We were going to go there last week but Kurt and I had a meeting to go to. It is comforting to know family isn't too far away.

Happy Spring everyone!
Sandy


P.S. I now have a different e-mail address: sandyjerg@aol.com I have lost all my saved addresses so please send me a note so I can update my address book. Thanks!

Sunday, March 16, 2003 12:47 AM CST

Day +37

Check out the new pictures!

Thought I'd be updating this from the apartment by now but it's OK to still be here at the hospital. Especially after last night. After Kurt and the boys left last night Mason was given some (a lot) of oral med's through his NG tube. Some days he does OK with handling them going in but last night he threw up - tube and all. I still have to ask the nurse how she took it out (in case it happens to me at the apartment). I had to walk out of the room when I saw it hanging there. Of course he was quite shook up. I was hoping that they'd give him a rest and wait till morning to replace it. They did.

They waited until late morning to put it back in. He worried about it all night. He'd wake up often and tell me he didn't want them to put another one in. Before they put it in he said he wanted to take the med's in his mouth. He did happen to take one but it took forever. We told him he could swallow them but the tube still needed to be replaced cuz he needs it too for tube feedings. He hasn't wanted to eat much. There were 4 nurses around his bed trying to keep him calm. I left a few times because I don't like to see the procedure but the nurse came to get me. Mason wanted me there for it. I held his hand but couldn't watch.

The repeated ultrasound of his bladder revealed he still has blood clots. Sounds like they will send him home (apartment) on IV fluids at night to try and flush his bladder and get rid of the blood. I'll have to learn that too.

Soon I will post our new address and phone number at the apartment. Every day for a while we will be going to clinic for transfusions, etc. The rest of the days I'm sure we'll be playing board games and hopefully Mason will be cooperative in catching up on his school work. He will continue to be tutored by his teacher, Beth. She will meet us at the clinic to help pass the time. When he doesn't require platelet transfusions every day we won't have to go every day to clinic and she will come to the apartment to tutor him. We welcome your phone calls and if you are near the area we welcome any visitors.

I am blessed with so many great friends and family. You all have helped me so much. Without such positive supportive people my days throughout all this would have been so lonely and without hope. Recently my good friend, Lori Jo (whom I had the pleasure of working with at Master Craft) send me a wonderful book which I have read over and over since receiving it only days ago. I will sign off with a quote from an unknow author from the book:

"Every experience God gives us, every person He puts in our lives, is the perfect preparation for the future in which only He can see."

Enjoy this beautiful weather!
Sandy

Wednesday, March 12, 2003 5:56 PM CST

Back to some uneventful days again - which is GOOD! We like those days when the doctors come in for rounds and only stay a few minutes. Not much to talk about.

Today is day 33 so we are 1/3 there! Last time I think we were outta here about day 22. I am actually glad we haven't been discharged yet because of what was discovered on Monday.

Mason has blood in his urine. It isn't much but they need to address it now instead of leaving and then have to come back (be readmitted). They did an ultrasound and saw blood clots in his bladder. This is not unusual with some of the chemo drugs he had. One in particular tends to leave that side effect but they usually see it earlier after transplant. Talking with families and nurses lately, they say that has happened to many on the unit. Last night wasn't a good night. He had a lot of pain in his tummy again. We are hoping the source of the pain is the blood clots or it may be bladder spasms again. He is getting a new drug that will hopefully take care of the problem. Otherwise, counts are looking good. He is requiring platelet transfusions pretty much every day though.

I haven't been keeping up with the "thank you's" for people bringing food over. I apologize. Everyone in the community has been so wonderful.

Mason has finally wanting to talk on the phone. He talked to his best buddie Jonathon for the first time in a long time. We hope to get them together soon - maybe when we are at the apartment. He could surely use a day of play with someone besides me. And to be honest I could use some adult interaction (his mom is a great friend).

All of us on 4A are have the deepest sympathy for a wonderful family from Grand Forks, ND that had been here for about 25 days. Their son of 11 years old past away Sunday after struggling for days with so many complications. His entire family is very strong, loving and gracious. It was very difficult to say good-bye to them. It seems that so many I've met within the last 40 days have a place in my heart. We are there to support each other but it is so terribly hard when a child goes through so much (not to mention what the rest of the family goes through) and the result is death. I have had a lot of time to pray since being here. I know when Mason and I are at the apartment I will be his 24 hour nurse. I need to find the time to continue to pray. Not only for Mason but for so many of you and for all those who we have gotten to know who still are here - even those who have left but don't know what tomorrow will bring.

We are so grateful for all your prayers that have helped Mason get better. We also want to thank God for the care and kindness given to Mason's Godmother Joanne. She is doing very well lately due to prayers and treatments she has been getting. They (Jim and Joanne) are in our prayers daily. May God continue to look down and bless those needing his healing.

Love to you all,
Sandy

P.s. I was just informed by Mason that he is hungry for pizza (hurray!) I ordered a cheese pizza with cinnamin stix. He has watched too many Pizza Hut commercials. I will be happy if he eats 1/2 a piece. The rest will go to the nurses on the unit because we ordered a large pizza.

Saturday, March 8, 2003 3:20 PM CST

It's been a couple of fairly good days! Mason still has pain in his tummy but that has gotten better in the last few days. He has been walking about in the hall. Nurses and doctors praise him when they see him in the hallway. It has been over 1 month since they have seen him walking and looking so good.

Two days ago they took out his NG tube in his nose and replaced it with a feeding tube. This tube is much more comfortable for him. The other tube was taking out the mucasitis in his tummy but that has gone away. The new tube allows them to administer his oral med's instead of taken them by mouth. We will be leaving with that tube in cuz I know he will not agree to take the med's orally - there are so many of them. The tube also will be used to give him his food. I was taught how to give him the TPN (burgers in a bag) that goes through his hickmann but they want to instead send him home with the feeding tube to give him his nutrition so that'll be another new job for me to learn. This time around it is reassuring to know that we are only 2 blocks from the hospital in case we need to get there quickly. Before we were 1.5 miles. Doesn't seem like too far but for us it is a more comforting feeling.

I spent a night at home for the first time in over a month.
Kurt stayed with Mason. I had a great time with Zach and Adam. The time went so fast. Sounds funny but I so much enjoyed cleaning and helping the boys with their homework.
The boys and I were able to find time to play outside before having to go to bed.

It was nice to go to Adam and Mason's school for a few minutes and talk to Mason's teacher. She sent home "Franklin" with Mason. Each student gets to take him home for a week and write about their experience with him. Mason has enjoyed telling the nurses all about Franklin when they come in. We have a lot to write about.

Still sounds like we'll be kicked out of here early next week. I told the doctor to please give me a list of medicines he'll need to take and the different times of the day I'll need to give em' to him so I can make a list.
Last time it helped to print off the computer a list so I could mark off each dosage. That way I knew I gave him each med the right number of times each day.



This whole hospital thing is getting old. We long for a normal day. We don't know what a normal day is. Hopefully we are getting closer each day to having those normal days.


Another passage I find appropriate:

I love the Lord, because he listens to my prayers for help.
He paid attention to me, so I will call to Him for help as long as I live. Psalm 116:1-2

Love,
Sandy (and of course Mason)

Saturday, March 8, 2003 3:20 PM CST

It's been a couple of fairly good days! Mason still has pain in his tummy but that has gotten better in the last few days. He has been walking about in the hall. Nurses and doctors praise him when they see him in the hallway. It has been over 1 month since they have seen him walking and looking so good.

Two days ago they took out his NG tube in his nose and replaced it with a feeding tube. This tube is much more comfortable for him. The other tube was taking out the mucasitis in his tummy but that has gone away. The new tube allows them to administer his oral med's instead of taken them by mouth. We will be leaving with that tube in cuz I know he will not agree to take the med's orally - there are so many of them. The tube also will be used to give him his food. I was taught how to give him the TPN (burgers in a bag) that goes through his hickmann but they want to instead send him home with the feeding tube to give him his nutrition so that'll be another new job for me to learn. This time around it is reassuring to know that we are only 2 blocks from the hospital in case we need to get there quickly. Before we were 1.5 miles. Doesn't seem like too far but for us it is a more comforting feeling.

I spent a night at home for the first time in over a month.
Kurt stayed with Mason. I had a great time with Zach and Adam. The time went so fast. Sounds funny but I so much enjoyed cleaning and helping the boys with their homework.
The boys and I were able to find time to play outside before having to go to bed.

It was nice to go to Adam and Mason's school for a few minutes and talk to Mason's teacher. She sent home "Franklin" with Mason. Each student gets to take him home for a week and write about their experience with him. Mason has enjoyed telling the nurses all about Franklin when they come in. We have a lot to write about.

Still sounds like we'll be kicked out of here early next week. I told the doctor to please give me a list of medicines he'll need to take and the different times of the day I'll need to give em' to him so I can make a list.
Last time it helped to print off the computer a list so I could mark off each dosage. That way I knew I gave him each med the right number of times each day.



This whole hospital thing is getting old. We long for a normal day. We don't know what a normal day is. Hopefully we are getting closer each day to having those normal days.


Another passage I find appropriate:

I love the Lord, because he listens to my prayers for help.
He paid attention to me, so I will call to Him for help as long as I live. Psalm 116:1-2

Love,
Sandy (and of course Mason)

Saturday, March 8, 2003 3:20 PM CST

It's been a couple of fairly good days! Mason still has pain in his tummy but that has gotten better in the last few days. He has been walking about in the hall. Nurses and doctors praise him when they see him in the hallway. It has been over 1 month since they have seen him walking and looking so good.

Two days ago they took out his NG tube in his nose and replaced it with a feeding tube. This tube is much more comfortable for him. The other tube was taking out the mucasitis in his tummy but that has gone away. The new tube allows them to administer his oral med's instead of taken them by mouth. We will be leaving with that tube in cuz I know he will not agree to take the med's orally - there are so many of them. The tube also will be used to give him his food. I was taught how to give him the TPN (burgers in a bag) that goes through his hickmann but they want to instead send him home with the feeding tube to give him his nutrition so that'll be another new job for me to learn. This time around it is reassuring to know that we are only 2 blocks from the hospital in case we need to get there quickly. Before we were 1.5 miles. Doesn't seem like too far but for us it is a more comforting feeling.

I spent a night at home for the first time in over a month.
Kurt stayed with Mason. I had a great time with Zach and Adam. The time went so fast. Sounds funny but I so much enjoyed cleaning and helping the boys with their homework.
The boys and I were able to find time to play outside before having to go to bed.

It was nice to go to Adam and Mason's school for a few minutes and talk to Mason's teacher. She sent home "Franklin" with Mason. Each student gets to take him home for a week and write about their experience with him. Mason has enjoyed telling the nurses all about Franklin when they come in. We have a lot to write about.

Still sounds like we'll be kicked out of here early next week. I told the doctor to please give me a list of medicines he'll need to take and the different times of the day I'll need to give em' to him so I can make a list.
Last time it helped to print off the computer a list so I could mark off each dosage. That way I knew I gave him each med the right number of times each day.



This whole hospital thing is getting old. We long for a normal day. We don't know what a normal day is. Hopefully we are getting closer each day to having those normal days.


Another passage I find appropriate:

I love the Lord, because he listens to my prayers for help.
He paid attention to me, so I will call to Him for help as long as I live. Psalm 116:1-2

Love,
Sandy (and of course Mason)

Wednesday, March 5, 2003 7:11 PM CST

DAY 26!!!!

White blood count: 4300
ANC: 3800


We owe it all to all of you!!! Last week at this time I was calling so many of you asking for extra prayers. It worked!! I truely believe that.

To think a week ago today he was 10 lbs. heavier, his kidneys weren't keeping up, he was in so much pain and he looked so sick. Now I know why they say this is THE place in the nation to be for bone marrow transplants. So many doctors have been working together to carefully make the right decisions to get Mason better. I have learned so much about the kidneys and liver and have met so many different specialists. This is a big hospital. It seems every time I get on that elevator I run in to a doctor/nurse that has cared for Mason. This has come to be our home away from home.

Since he had his surgery (putting in the pertonial dialysis catheter) he has "turned the corner" and is doing very well. They drained so much fluid from his tummy. The veno occlusive disease is gone and things are finally flowing in the right direction in his liver. Although he still has pain in the liver area because his liver is so enlarged yet. They say it takes 2-6 weeks for that organ to get to it's normal size. The morphine is being decreased .5 every day - so today he is at 1.5. They are even talking discharge soon. I don't know how to take that. That will mean more responsiblity for me at the apartment. He still isn't eating so he'll be on the "burgers in a bag" when we leave. I am more comfortable with it now but it just adds to everything. Last time I wasn't as knowledgable about all this. We just went day by day without any complications. He could still get the Graft vs. Host disease so I have to really watch for that. That can be seen in many different ways - skin rash, dry skin, shiny skin, weight loss, diarrhea, and so much more. He breezed through the 100 days with absolutely nothing before but this time it has been so hard and I am afraid of the worst.

I just got back from the apartment. There was a Care Partner volunteer here for an hour. Mason didn't sleep all day after waking up for surgery. We all expected him to be sleepy today but he fighted it until Carl came. He slept the whole time Carl was here. Carl is awesome at drawing so I asked him to paint Mason's window with a BIG Scooby-Doo. It looks great. I'll have to get a picture of Mason with Scooby before we leave and put it on his photo album page.

I hope to go home tomorrow for a few hours to pack a few things since we will probably be outta here soon. I intend to pack up the computer along with important things of Mason's. It'll be good to spend some time with Zach and Adam. I miss them terribly.

I will close with something I came across from an inspirational book given to me by great friends - Linda and Cheryl.

The Lord hears good people when they cry out to Him, and He saves them from all their troubles. The Lord is close to the brokenhearted, and He saves those whose spirits have been crushed. Psalm 34:17-18

Love,
Sandy

Saturday, March 1, 2003 10:54 AM CST

We never thought this time around it would be so hard. Last time I wrote he had just gotten out of surgery. When he woke from surgery he was still in pain. He literally slept on his bed pan. We thought he was constipated but 36 hours later figured out the problem. It took a lot of heads but praise God we solved it. He had been having bladder spasms for all that time and we didn't know. His catheter wasn't working 100%. Ultrasound showed he had 600+ cc's of urine in his bladder. They removed the catheter and immediately he said he had to pee. 525 cc's came out. He was a different kid after peeing. That poor little guy.All the nurses were amazed that he could have that much urine in him. All the pain he went through!

He was on the dialysis machine for a few hours but around 12 am the fluid stopped going through him. Thank God it was continuing to drain the fluid but the dialysis wasn't working. We think because of all the pressure he put on his tummy to go #2, the tube they inserted in his belly turned and was sitting next to some tissue. The kidney doctors the next day came in with good news on his creatnine level. That had gone down so he didn't necessarily need to be on dialysis. It continues to go down! Another concern has been his bilirubin - that too has gone down and he is not as jaundice looking. The whites of his eyes were even yellow in color. His weight has gone down considerably. He was up to 33.1 kilos and today his weight was 26.2. Most of that extra weight was all in his belly.

Last night he had a lot of pain in his shoulder. This can happen if pneumonia is present. So, before I left to come here (Children's, because my computer in his room is not working), X-ray came to take a picture of his chest. Hopefully that will come back negative.

You all have done a great job praying! One request was that you pray he gets white blood cells in. Well, today he has a WBC of 2600. This is helping heal everything - from his liver to his sores in his mouth, throat, stomach and lips. He is looking great! We've been playing cards and he is even out of bed a little.

Physical therapy has suggested he start to sleep with splints on his legs/feet. Because he had been having so much pain for so long he would tend to flex his feet and toes downward. Because of that he has a hard time walking. This is not a real concern. It will just take him a while to get his strength back all over his body.

Mason slept fairly well last night but at 4 am on our unit there was a code blue. It was announced over the speaker so I woke up and couldn't get back to sleep. There are about 13 kids in unit 4A. It was a 17 year old girl. My heart goes out to that family. There is nothing worse a parent can go through. It's hard enough seeing your child in pain.

Please continue to pray for more healing. We aren't "out of the woods" yet but there seems to be a light at the end of the tunnel. Dr. Paul the other day said "this is about as hard as it gets". That was on Tuesday. Since Tuesday Mason has made remarkable progress.

Although he still is quite cooperative he has shown his strong-headedness a lot lately. The other day he wanted some cream for his bottom. We asked for it in the early morning and didn't get it until early afternoon. He kept saying "why can't those dare nurses get going and get me that cream!" in a hostile manner. I felt the same way that day but tried to reserve myself.

The day he was in most pain (due to his bladder spasms) he said to me, "mom, if I had one more wish - I would wish that I wouldn't have leukemia anymore". My response: "the leukemia is probably all gone from your body but now we have other things that we are trying to fix". Hearing him say that just broke my heart.

Special thanks to Linda Carlson and Cheryl Collins for the wonderful care package for me. I am really enjoying reading the inspirational book. Mason is crazy over all the Scooby-Doo gifts. Also, my good friend Chey was so thoughtful. After telling her I thought I needed to start a project due to all the time I have when Mason's sleeping, she gave me a bag of supplies to add to my stamping collection. I have made quite a few cards and hope to get some scrapbook started. God has blessed me with wonderful family and friends.

Much love and prayers to all,
Sandy

Wednesday, February 26, 2003 3:00 PM CST

DAY 19!!! - White Blood Count 400!!!!!

It's been a few very hard days seeing Mason in so much pain.

I will start with the good news first:

Of course seeing his white blood count go up (even if only by 300) is a good thing. It had been at 100 since transplant day (day 0).

Kidney doctors say his kidneys will be OK after they rest a few days and he is on dialysis.

He actually joked around a little last night and we enjoyed the night talking and laughing - even though they were few and far in between. He said "mom, when my lips are healed I will kiss you". And a few other comments that put joy back in me.

He's wanting to do his mouth care after not getting him to do it for about 4 days.

Other news (not necessarily bad):

Today he'll go in to OR for pertonial dialysis. He had a small tube (catheter) but in his stomach just left of his belly button on Sunday. They thought they'd be able to excrete most of his fluid around his liver, kidneys and gall bladder but not enough has come out and more continues to be made in his body. This machine he'll be hooked up to should take the fluid off so he is more comfortable. Right now the fluid has surrounded his lungs and crept up around his ribs which has made it harder for him to breath. The dialysis will actually be good so that the kidneys can rest for a while and they should be just fine.

We had been worried the kidneys weren't working 100% because he couldn't pee sometimes. He'd try but it wouldn't come. I think it was last Saturday night they first decided to put in a catheter. Since Saturday he has had it replaced 4 times. They had been coming out when he'd get out of bed to use the toilet Understandably, he absolutely hates that procedure.

Dr. Steve from Children's came to visit. After he left Mason woke up and said "I was happy to see him" During our visit Mason seemed a sleep but he must have heard us talking and saw him.

After surgery:

Just got back from being gone from the room for 4 hours. I started writing but they came to get Mason for surgery.
The PD procedure went well they say. While he was put to sleep they did a great job cleaning up his dried blood on his lips. He looks like a different kid. I bet he feels better with all that off too.

He still seems to be in a lot of pain. He points to his tummy where his liver is. They think the pain is from the insertion of the new catheter and it will hurt for a couple days. I hope it's only a couple of days. Actually a couple of days is too many. He has indured enough already.

I am ready for a good nights sleep tonight so we'll see how that goes. I know I am now behind in that but still feel OK. One of these days I think I'll take a nap when Mason does - tomorrow might be that day.

It was great to have my sister here early in the week. It was an unexpected visit but much appreciated. That day she got to meet many doctors coming in. Most days it gets old having so many professionals going in and out of here.

I have been missing out on all the great meals being sent over to the house. The boys and Kurt have so much enjoyed all of them.

Please pray that Mason continues to get more white blood cells and that they end up being those made by his new marrow. We also need to pray that this veno occlusion disease goes away with counts coming in and that any infection stays away.

We are so grateful for all your prayers. I don't think Mason would have gotten this far and made it over so many hurdles without all your prayers. We still have a long way to go so don't stop praying yet.

All our love,
The Jergens

Saturday, February 22, 2003 10:28 PM CST

Because I am emotionally tired out tonight I don't intend to write too much but I wanted to update all of you so that more prayers could be said for Mason.

He has run in to some complications over the last couple days. Since we have been here he as gained a considerable amount of weight. The weight gain is fluid around the liver, gull bladder and kidneys. They have tried so many different combinations of diarredics both orally and IV. Today he did go down 1.1 lbs but his belly is still extended. This weight needs to come off soon or there will be more complications. I met with the doctor tonight and he felt he needed to tell me everything that could happen. We need people to pray like mad and pass on to others to pray!

Mason is very uncomfortable and in quite a bit of pain even though he is on morphine. Every moment he awakes I tell him I miss him and can't wait to play "Sorry" with him again. I miss him terribly. It has been so lonely here. My family wants to be here for us but I am OK with being alone. There are moments when I feel I just don't want to talk to anyone - just lay next to Mason and pray.

My good friends Sandy Loehrs and Karen Johnson Leuthner came this week which was much needed company. They (like so many others) have been such a support to us.

My cousin, Randy Dostal is coming up tonight. He too has been so gracious anytime I need him. I feel like crashing right now but his visit will be good for me.

The boys and I were going to go to Mankato to see my mom, sister and family, Jim and Joanne and Fr. Ed but we may just stay here. Instead of taking it a day at a time like before, it's at - taking it an hour at a time.

Together - pass the word - pray that Mason gets rid of the fluid in his little body and he begins to heal.

Thanks for all the prayers! I believe the power of prayer works. God needs to hear all of our prayers for Mason and know how precious he is to so many. He has so many years of life ahead of him.

Sunday, February 16, 2003 7:04 PM CST

These have been some tough days. Seeing Mason like this is so hard. I try and remember often what a few doctors said - that it's actually good to have some tough days with fevers, mouth sores and sores down in to his throat and stomach. Because it's Mason's 2nd transplant they knew his days after transplant wouldn't be easy. It's sooo hard though to see him in pain. He is very lethargic -activity and alertness is very low.

These last 2 days he has slept so much. Saturday morning he awoke at 4 am and threw up blood. I was startled and rushed to get the nurse. They are used to seeing this but seeing your own child in a state like that is so frightening. Three hours later he threw up more blood - a lot. Because of the sores going from his mouth to throat into his GI tract, the blood is swallowed and draining in to his stomach. The blood sits in his stomach to make him nauseated which makes it come up. It only happened those 2 times. Throwing up they don't want his platelet count to get too low so today he had 2 platelet transfusions.

I look at Mason and see how much "stuff" they are putting into his little body and are overwhelmed at how all that medicine, etc. goes to all the right places in him - and how they know the right amount he should get. It comes down to trusting the medical staff and also putting one's trust in God. God is the One these days I have to put my trust in. He is the One I pray to. God surrounds us daily in this room, watches over Mason and is slowly healing him.

Yesterday he actually sat up and played on the computer with his brothers a short time. He is asked to do mouth cares 4/day. It's a salt and soda mixture that helps heal his sores in him mouth. Lately we have to make sure he gets an extra bolus of morphine before he does his mouth care otherwise it is quite painful.

Even though he feels and looks so ill right now I believe it's part of the healing process. At Children's I'd often talk to the champlain on 8th floor who, himself went through cancer. He's an incredible person. I remember after the 1st round of chemo didn't kill the leukemic cells in December he asked me " are you ready to hand everything over to God and let Him handle Mason's illness from here?" I had never thought of the situation that way but I do believe now that's what I need to do. I feel I still do have some control (by praying) but he is in God's hands and God will help him heal.

Today is day 10. Please pray that God will restore Mason's little body with blood cells necessary to heal his many sores and rid him of pain. If only I could turn the tables and feel his pain instead of seeing him in such pain.

Please keep praying,
Thank you!
Sandy

Wednesday, February 12, 2003 10:45 AM CST

More uneventful days! Mason's body is totally wiped-out so he doesn't have much ambition to do anything. Although yesterday morning he and I spent a good 2 hours playing card games. I could tell after a while that he was tuckering out and only kept on going because he know I wanted to play more. The rest of the day yesterday he rested and watched cartoons. His teacher did come for a while but today she only stayed a few minutes cuz he didn't feel good.

He has quite a few mouth sores and complains his throat hurts. Yesterday my best friend, Mel was here to visit us. It was so good to spend a couple hours with her. She has always been there for me through so many things. While she was here the nurses brought in the dreadful morphine machine. I didn't think he needed to start on it already yesterday morning but he must of cuz today they increased the dosage he is getting. And, like before he can give himself an extra bump when needed by pushing the button. Last night went well and we slept good but waking up he immediately complained of pain in his mouth and throat. Once we start seeing counts again the sores should heal. These next few days will be hard - it's a matter of waiting.

We've been working on Valentine's but it has been slow. I try and get him at a time when I think he feels up to it. The other children on the floor have been dropping off Valentine's. A little girl from Chaska was here yesterday when I was out with Lori. She was here last year at this time. I would check her Caringbridge website often. She is doing well. She dropped off a Valentine and a stuffed animal for Mason.

I have gotten to know another family here from Alabama. They are getting close to being discharged but will remain in Minneapolis until day 100. Their son had a transplant too but they took it from their 2 month old baby's umbilical cord. They had the baby for the reason of trying to save their other son. Somehow they had to make sure the egg that was fertilized was a match to their other son. It is quite a story! How amazing what they can do these days.

Prayer requests: that Mason gets through these next few days without too much pain, that he continues to be somewhat happy and is able to joke a little and that his body accepts Adam's marrow slowly and without any complications.

Happy Valentine's Day everyone! Thank you Vouk family for another great meal. Your family and so many others have been so wonderful and helping all of us get through these days. Mason really misses Jonathon.

The Jergens

Sunday, February 9, 2003 3:45 PM CST

Today is day 2! Only 98 days till we go home! We started a calendar - a countdown. Last time he was doing so well he went home before day 100. The way it looks now that may be the case this time around too. Mason is doing very well. He stopped eating though today. He wants to eat but nothing sounds good. He'll ask "mom, what can I eat?". So, I go through the usual likings - rice, mac and cheese, little smokies, meatballs, cereal. He has tried all of those recently and they all taste different than he remembers. The chemo and radiation changes his taste. He is on 24 hour TPN - "burgers in a bag" so we don't have to worry about him losing weight.

Janice (my sister) and her family came for a visit today. They were at a juggling convention in St. Paul all weekend. Marco is a remarkable juggler for only being 12 -almost 13. Mason didn't want them to leave. He had fun playing cards with Marco and Christina.

We have been getting some exercise in the room. Janice and Jonathon brought a beach ball so we made a bat out of newspaper and he'll hit the ball across the room. It's good exercise for both of us. It's a good sign he still has energy for that yet.

The doc's say that these next 7-14 days are down days where a lot is going on in his body and he is likely to develop infections/fevers. His bone marrow was virtually wiped-out before the transplant so that Adam's marrow could be transplanted in him. So now, Adam's marrow is trying to make a new home in Mason's body (bones). We hope that the chemo and radiation killed all the bad leukemic cells and found all those that may have been hiding. I believe that Mason never was in remission and maybe 1 tiny leukemic cell hid somewhere in his marrow where the chemo didn't get to - this was why he relapsed. Being he had radiation this time around, the radiation may have been the ticket to no leukemia! So much speculation. My mind tends to go in so many directions many day trying to figure out this journey/road we are traveling again.

Adam was quite the trooper on transplant day. We are very proud of him. Yesterday he was skipping down the hall. Right after surgery he was brought up to 4A - 2 doors down from Mason. Mason actually was able to see Adam wheeled in to his room. He watched from his window in his room. A nurse was in the room with him at the time and the first thing he asked her was "is he feeling OK?" He is so caring. Adam's back (above his butt) felt sore and his throat felt funny because of the breathing tube they inserted during the procedure. Otherwise he felt fine. He was in Mason room after they took the IV out of his arm - about 3 hours later.

The marrow actually didn't get to Mason until 5:30 that night. After extracting it from Adam they take it to the lab to take out the red blood cells and calculate the right amount of marrow to transfuse in to Mason. The doctors, nurses and Mason signed a certificate for Adam to keep. They bring in balloons and gifts for Adam and Mason. I took pictures on the digital camera and my camera but I'll have to wait until my film gets developed cuz the digital shots turned out too dark.

Adam, Zach and Kurt left a little while ago. It's been hard juggling everything. Adam and Zach had homework to get done, tests to study for plus I like to try and spend some fun time one on one with each of them before they go for the week. I sure miss them - Mason does too.

Please pray that God continues to strenghten Mason more and more everyday. Most importantly that He protects him from infections/fevers and any complications during these days in the hospital and until that magical day 100 where Mason will be considered cancer-free forever!

Extra thanks to everyone at St Mary's (Delano) for all their wonderful prayers for Mason. Thanks too to Fr. Jim at St. Mary's for his many prayer intentions for Mason since his relapse.

Check out the new pictures!

Love,
Sandy

Friday, February 7, 2003 7:02 AM CST

Well, today is the BIG day! Adam and Kurt just came to the hospital after staying over at the apartment last night. Adam isn't anxious - he's just excited about making "Goo" with Julia (the Child Life person on the BMT floor) after he is done with the harvest and is settled in his room. Mason made "Goo" with her the first day he was here.

We had a quiet uneventful night last night. Mason's tummy has been bothering him these last couple days. They say it's due to his radiation treatments. Yesterdy he finished radiation. Everyone down in radiation oncology said he was very cooperative and did very well for being only 5. Adam was here yesterday for his last treatment and got to watch him on the TV screen. I wonder if Adam will remember this years from now - Mason too?

Today should be filled with excitement. The nurses/doctors make BMT day special for both the donor and the recepient. I,ll be sure to have pictures of today on the website probably tonight or tomorrow.

I feel today is the beginning of good health for Mason. With God standing next to us throughout this day and everyday, how can we go wrong. He has listened to all of our prayers for Mason. God knows how precious Mason is to so many of us. I know there are so many loved ones in heaven surrounding us with their love and praying extra hard for Mason - especially my dad, grandpa's, grandma's, nephew (baby Angel), cousin Scotty and so many others who have been close to us.


Much love to all,
The Jergens

Tueday, February 4, 2003 6:55 AM CST

Surgery went well Thursday. We feel confident that this new hickmann should be in until day 100. Before surgery I talked with the surgeon about other measures he can take to reinforce the hickmann so it STAYS in. Because i'ts brand new again it's essential to change the dressing every day for 5 days. After those 5 days then every 3 days. Changing his dressing has been kind-of-like taking oral med's - another struggle.

After surgery we waited a long time cuz his room wasn't ready on 4A. It was well worth the wait - he has the biggest room on the unit - with a great view! Last stay here he had the tiniest room with no view or room to play. Although it didn't stop godfather Jimmy and Mason from playing bat and ball. A year and a half later and nurses remember Mason and Jimmy playing ball with a rolled up newspaper and nerf ball. When talking with Jim and Joanne after we got settled in his room, we told them about our big room and great treatment here so far. This place has changed for the better. Jim and Joanne came up on Saturday. Joanne painted Mason's windows. When I get the digital camera I for sure will get a picture of it on this website. As many know, Joanne is - among other things, very artistic. Last time here she painted Pikachu's on his windows.

We were able to get an apartment 3 blocks away. It's a 2 bedroom newer apartment. Very different from the other 1 we had. This month it'll only be used on the weekends when the boys and Kurt come to visit.






Chemo started Friday morning and ended Saturday night. This certain chemo can be toxic to the bladder if he doesn't pee every 2 hours so he had to urinate at least 150cc's. The nurses did a great job. I slept through most of the wake-ups. Mason didn't fuss those 2 nights at all. I was amazed!

Sunday was a day of no chemo - only oral med's. Yesterday they woke us at 7 to go down to radiation. Mason sat in a bed with his knees bent. They taped his hands to his legs so he was less likely to move them. After 8 minutes they went in there and moved him slightly. Radiation therapy is 15 minutes each session, twice a day for 4 days. He sat pretty still. Mason wanted me to tape made-up Scooby-Doo stories. It was unfortunate the tape recorder in radiation needed repair. Instead I read him some books through a speaker. I'm able to see him during his sessions on a TV screen. He can talk to me and I can talk to him. Side effects can be mouthsores, pinkish skin, headaches and nausea. After his 1st session yesterday he ate 2 bowls of rice, a bowl of corn flakes and potato chips. It hasn't affected him yet.

Adam will be here Thursday for a few tests. Friday morning he'll be harvested. Most donors only are in for the day. Zach did well and was discharged in the late afternoon. We're hoping Adam will be in a room on this floor near Mason.

I forgot to mention my dear dear cousin Diane has gone back to California. She was a Godsend! We are so grateful for her presence here. Her constant support while at Children's helped Mason and me. I was glad that Mason got to spend time with his godmother Diane. We miss her and love her so much.

Please continue to pray not only for Mason but for all the professionals here at Fairview. I know they all have a lot of knowledge and experience but a few prayers for them won't hurt.

Our family has been so blessed with so many delicious meals from so many wonderful and supportive people in the community. Thank you so very much everyone. I wasn't at home to enjoy the tacos last night but the boys sure loved em' - thanks Ginger Dixon! We hope we can give back some day to all of you.

Wednesday, January 29, 2003 at 10:07 PM (CST)

Just got the boys to bed. I could have fallen asleep too but knew well enough not to cuz I have lots to get done - 1st is to pack. We thought there'd be time for that tomorrow but plans have changed. Today was the last day of work-up and the emotional one of the 3 days. Our 2 pm appointment was with the cardiovascular doctors. They needed to make sure his line (hickmann) was working well. Good thing they examined it and listened to our concerns. The last week we noticed his tube dropping. Turns out it came out about 2 inches. Nurses thought the gunk on his hickmann was crust from healing. Turns out it was the cuff that was supposed to be against his skin on the inside. The cuff is like velcro that is there to prevent germs from creeping in his body and causing infections. Thank God he didn't get an infection! One doctor took a look at it and immediately knew it was the cuff. Yesterday nurses tried to scrap it off thinking it was just gunk. After she said it was the cuff I knew it would have to be replaced before they could use it again (take blood and administer med's). She said they'd have to pull it out. Mason looked at me with his chin quivering (you know he is sad when you see his little chin quivering). I wanted to dart out of the room and come back when they were done but knowing he wanted me there I stayed and watched the painful procedure. I so much wanted to switch places with him at that time cuz I knew it was gonna be painful. He did great - again very brave and didn't put up a fight. How does he do it?

So - tomorrow he has to be in OR at 8 am which means they need us there at 5:30 am. We'll be rising at 4:30.

Yesterday was a full day talking with radiation oncologists. At age 5 they aren't sure if one can handle 15 min intervals of sitting still. Mason will have radiation 2/day Mon - Thursday of next week. If they sedate him basically he can't eat all day - all those days. After visiting with the doctors they felt confident that he'll do fine without sedation. Our bedtime routine involves a Scooby-Doo story or two every night. Mason wants me to tape made-up stories for him to listen to while his has his radiation apptmts.

Transplant day will be Feb. 7th. Adam is excited about missing 2 days of school (even though he loves school and loves his teacher). He did sooo well with his tests earlier this week. I was very proud of him.

Our whole family ate very well tonight. Joy Bolea brought over her famous dish/dishes again. Thanks Joy and thanks too to Bridget Nolan for the great chicken. Adam loved the strawberries.

Prayer requests: pray that the new facility (Fairview U) gives Mason the care he needs during this very critical time of treatment. We have gotten this far - there's a light at the end of the tunnel. Mason made it know to all of us that he is an extremely strong-willed kid and this disease is only a bump in the road.

Blessings,
The Jergens

Thursday, January 23, 2003 at 07:20 PM (CST)

Great News! Mason is (as Dr. Steve would say) clinically/technically in remission. His bone marrow and spinal tap biopsy shows 0.2% blasts! From what I understand, any normal person (withouth leukemia) could have 5% or below blasts. It's a great day! We feel so fortunate to have the great oncology team from Children's Minneapolis. Back about 1 1/2 months ago they were all scratching their heads after knowing the chemotherapy combination didn't work for Mason. Dr. Steve carefully studied and contacted (via phone and e-mail) many doctors nationwide. They all decided to go with the new drug - Mylatarg (not a chemo drug). He had terrible reactions to it but it worked!!!

We still have 100+ days ahead of us of the unknown. Day 0 will be his transplant day. Day 100 will be that magic day where we hope to get to without many bumps and hurdles. Last time Mason was discharged about day 25. After day 25 he lived with us at the apartment until about day 70. After day 70 we returned home. Usually a bmt patient needs to stay within 30 minutes of the hospital for 100 days. Mason didn't require many transfusions and his counts were good so the doc's let us go home before day 100.

Before Mason was admitted to Children's (11-30-02), a family from the Shakopee area were already there. Their little guy, Ryan (almost 1 year) went through 2 stages of chemo. He is now done at Children's and is at the U. His transplant day is the 24th of January. He has 3 brothers and none of them matched. Mason's godfather, Jim Decker (back 5-01) calculated the odds- for Mason to have both his brothers match was 1 and 64. We have been blessed. I have met families at Children's who have up to 6 kids and not 1 matched. When I am angry and ask "why Mason" I try and stop and remember the positive - Zach and Adam matched.

Mason is feeling great tonight. He is remarkable. I can't even count how many times he has been put out for BM biopsies. Today he had a BM biopsy and a spinal tap and he is feeling great, joking around and eating good. I don't know how he does it! I do believe, however, prayers and support from all of you have helped so much. Keep em' coming!

Love ya all!
Sandy

Thursday, January 23, 2003 at 07:20 PM (CST)

Great News! Mason is (as Dr. Steve would say) clinically/technically in remission. His bone marrow and spinal tap biopsy shows 0.2% blasts! From what I understand, any normal person (withouth leukemia) could have 5% or below blasts. It's a great day! We feel so fortunate to have the great oncology team from Children's Minneapolis. Back about 1 1/2 months ago they were all scratching their heads after knowing the chemotherapy combination didn't work for Mason. Dr. Steve carefully studied and contacted (via phone and e-mail) many doctors nationwide. They all decided to go with the new drug - Mylatarg (not a chemo drug). He had terrible reactions to it but it worked!!!

We still have 100+ days ahead of us of the unknown. Day 0 will be his transplant day. Day 100 will be that magic day where we hope to get to without many bumps and hurdles. Last time Mason was discharged about day 25. After day 25 he lived with us at the apartment until about day 70. After day 70 we returned home. Usually a bmt patient needs to stay within 30 minutes of the hospital for 100 days. Mason didn't require many transfusions and his counts were good so the doc's let us go home before day 100.

Before Mason was admitted to Children's (11-30-02), a family from the Shakopee area were already there. Their little guy, Ryan (almost 1 year) went through 2 stages of chemo. He is now done at Children's and is at the U. His transplant day is the 24th of January. He has 3 brothers and none of them matched. Mason's godfather, Jim Decker (back 5-01) calculated the odds- for Mason to have both his brothers match was 1 and 64. We have been blessed. I have met families at Children's who have up to 6 kids and not 1 matched. When I am angry and ask "why Mason" I try and stop and remember the positive - Zach and Adam matched.

Mason is feeling great tonight. He is remarkable. I can't even count how many times he has been put out for BM biopsies. Today he had a BM biopsy and a spinal tap and he is feeling great, joking around and eating good. I don't know how he does it! I do believe, however, prayers and support from all of you have helped so much. Keep em' coming!

Love ya all!
Sandy

Thursday, January 23, 2003 at 07:20 PM (CST)

Great News! Mason is (as Dr. Steve would say) clinically/technically in remission. His bone marrow and spinal tap biopsy shows 0.2% blasts! From what I understand, any normal person (withouth leukemia) could have 5% or below blasts. It's a great day! We feel so fortunate to have the great oncology team from Children's Minneapolis. Back about 1 1/2 months ago they were all scratching their heads after knowing the chemotherapy combination didn't work for Mason. Dr. Steve carefully studied and contacted (via phone and e-mail) many doctors nationwide. They all decided to go with the new drug - Mylatarg (not a chemo drug). He had terrible reactions to it but it worked!!!

We still have 100+ days ahead of us of the unknown. Day 0 will be his transplant day. Day 100 will be that magic day where we hope to get to without many bumps and hurdles. Last time Mason was discharged about day 25. After day 25 he lived with us at the apartment until about day 70. After day 70 we returned home. Usually a bmt patient needs to stay within 30 minutes of the hospital for 100 days. Mason didn't require many transfusions and his counts were good so the doc's let us go home before day 100.

Before Mason was admitted to Children's (11-30-02), a family from the Shakopee area were already there. Their little guy, Ryan (almost 1 year) went through 2 stages of chemo. He is now done at Children's and is at the U. His transplant day is the 24th of January. He has 3 brothers and none of them matched. Mason's godfather, Jim Decker (back 5-01) calculated the odds- for Mason to have both his brothers match was 1 and 64. We have been blessed. I have met families at Children's who have up to 6 kids and not 1 matched. When I am angry and ask "why Mason" I try and stop and remember the positive - Zach and Adam matched.

Mason is feeling great tonight. He is remarkable. I can't even count how many times he has been put out for BM biopsies. Today he had a BM biopsy and a spinal tap and he is feeling great, joking around and eating good. I don't know how he does it! I do believe, however, prayers and support from all of you have helped so much. Keep em' coming!

Love ya all!
Sandy

Thursday, January 23, 2003 at 07:20 PM (CST)

Great News! Mason is (as Dr. Steve would say) clinically/technically in remission. His bone marrow and spinal tap biopsy shows 0.2% blasts! From what I understand, any normal person (withouth leukemia) could have 5% or below blasts. It's a great day! We feel so fortunate to have the great oncology team from Children's Minneapolis. Back about 1 1/2 months ago they were all scratching their heads after knowing the chemotherapy combination didn't work for Mason. Dr. Steve carefully studied and contacted (via phone and e-mail) many doctors nationwide. They all decided to go with the new drug - Mylatarg (not a chemo drug). He had terrible reactions to it but it worked!!!

We still have 100+ days ahead of us of the unknown. Day 0 will be his transplant day. Day 100 will be that magic day where we hope to get to without many bumps and hurdles. Last time Mason was discharged about day 25. After day 25 he lived with us at the apartment until about day 70. After day 70 we returned home. Usually a bmt patient needs to stay within 30 minutes of the hospital for 100 days. Mason didn't require many transfusions and his counts were good so the doc's let us go home before day 100.

Before Mason was admitted to Children's (11-30-02), a family from the Shakopee area were already there. Their little guy, Ryan (almost 1 year) went through 2 stages of chemo. He is now done at Children's and is at the U. His transplant day is the 24th of January. He has 3 brothers and none of them matched. Mason's godfather, Jim Decker (back 5-01) calculated the odds- for Mason to have both his brothers match was 1 and 64. We have been blessed. I have met families at Children's who have up to 6 kids and not 1 matched. When I am angry and ask "why Mason" I try and stop and remember the positive - Zach and Adam matched.

Mason is feeling great tonight. He is remarkable. I can't even count how many times he has been put out for BM biopsies. Today he had a BM biopsy and a spinal tap and he is feeling great, joking around and eating good. I don't know how he does it! I do believe, however, prayers and support from all of you have helped so much. Keep em' coming!

Love ya all!
Sandy

Thursday, January 23, 2003 at 07:20 PM (CST)

Great News! Mason is (as Dr. Steve would say) clinically/technically in remission. His bone marrow and spinal tap biopsy shows 0.2% blasts! From what I understand, any normal person (withouth leukemia) could have 5% or below blasts. It's a great day! We feel so fortunate to have the great oncology team from Children's Minneapolis. Back about 1 1/2 months ago they were all scratching their heads after knowing the chemotherapy combination didn't work for Mason. Dr. Steve carefully studied and contacted (via phone and e-mail) many doctors nationwide. They all decided to go with the new drug - Mylatarg (not a chemo drug). He had terrible reactions to it but it worked!!!

We still have 100+ days ahead of us of the unknown. Day 0 will be his transplant day. Day 100 will be that magic day where we hope to get to without many bumps and hurdles. Last time Mason was discharged about day 25. After day 25 he lived with us at the apartment until about day 70. After day 70 we returned home. Usually a bmt patient needs to stay within 30 minutes of the hospital for 100 days. Mason didn't require many transfusions and his counts were good so the doc's let us go home before day 100.

Before Mason was admitted to Children's (11-30-02), a family from the Shakopee area were already there. Their little guy, Ryan (almost 1 year) went through 2 stages of chemo. He is now done at Children's and is at the U. His transplant day is the 24th of January. He has 3 brothers and none of them matched. Mason's godfather, Jim Decker (back 5-01) calculated the odds- for Mason to have both his brothers match was 1 and 64. We have been blessed. I have met families at Children's who have up to 6 kids and not 1 matched. When I am angry and ask "why Mason" I try and stop and remember the positive - Zach and Adam matched.

Mason is feeling great tonight. He is remarkable. I can't even count how many times he has been put out for BM biopsies. Today he had a BM biopsy and a spinal tap and he is feeling great, joking around and eating good. I don't know how he does it! I do believe, however, prayers and support from all of you have helped so much. Keep em' coming!

Love ya all!
Sandy

Thursday, January 16, 2003 at 01:31 PM (CST)

This'll be quick cuz any minute now Mason and I are heading home. His counts are way up there and he is off the morphine. If we could only feel good about getting that oral medicine down 3 times a day. They thought it would be easier to have it put through his hickmann 3 times a day (running 1 hour at a time). I disagreed. He's gonna need to take many oral med's after tranplant so we might as well start now.

The 27th we'll go to the U for "work up". They are thinking 3 days or so later be admitted and immediately start chemo and full body radiation. After chemo and radiation he'll have 1 day of rest then Adam will be harvested. The day of the harvesting is the same day as transplant day. Another big day!!

We're hoping to get to school tomorrow to see everyone in Mrs. Sexton's class. It will be a short visit but I think it'll make Mason and his friends happy.


Love,
The Jergens

Thursday, January 16, 2003 at 01:31 PM (CST)

This'll be quick cuz any minute now Mason and I are heading home. His counts are way up there and he is off the morphine. If we could only feel good about getting that oral medicine down 3 times a day. They thought it would be easier to have it put through his hickmann 3 times a day (running 1 hour at a time). I disagreed. He's gonna need to take many oral med's after tranplant so we might as well start now.

The 27th we'll go to the U for "work up". They are thinking 3 days or so later be admitted and immediately start chemo and full body radiation. After chemo and radiation he'll have 1 day of rest then Adam will be harvested. The day of the harvesting is the same day as transplant day. Another big day!!

We're hoping to get to school tomorrow to see everyone in Mrs. Sexton's class. It will be a short visit but I think it'll make Mason and his friends happy.


Love,
The Jergens

Thursday, January 16, 2003 at 01:31 PM (CST)

This'll be quick cuz any minute now Mason and I are heading home. His counts are way up there and he is off the morphine. If we could only feel good about getting that oral medicine down 3 times a day. They thought it would be easier to have it put through his hickmann 3 times a day (running 1 hour at a time). I disagreed. He's gonna need to take many oral med's after tranplant so we might as well start now.

The 27th we'll go to the U for "work up". They are thinking 3 days or so later be admitted and immediately start chemo and full body radiation. After chemo and radiation he'll have 1 day of rest then Adam will be harvested. The day of the harvesting is the same day as transplant day. Another big day!!

We're hoping to get to school tomorrow to see everyone in Mrs. Sexton's class. It will be a short visit but I think it'll make Mason and his friends happy.


Love,
The Jergens

Wednesday, January 15, 2003 at 11:42 AM (CST)

Mason and I slept in today. In fact, I had to wake him at 9 because his tutor was here. He does so well with her. Mrs. Sexton gives us worksheets the rest of his class at W-M are working on.

His mouth sores and lymph node has gotten a lot better. He still doesn't want to eat anything other than yogurt and melted cheese. Dr. Steve saw the melted cheese last night when he came in to examine Mason and said "what is that?" It looks terrible but if he eats it so what! He gets TPN 24 hours - it's total protein nutrition, otherwise known here as "burgers in a bag". Thank God for that stuff! He has actually gained 2 pounds since last Wednesday.

Sounds like we are tentatively scheduled to go in for "work up" the week of the 27th. Mason will need to have all his organs tested before he is admitted. Work up is 3 days. Adam will need to come in for tests too - one of those days. They don't want us to be out of the hospital too long with fear that the blasts could come back. He'll first have to have another bone marrow biopsy before leaving here - probably early next week providing his counts are still going up.

It would be nice if Mason could visit his class before we go to the U. I know his class put together a video for him to watch. We haven't received it yet but I am hoping it will boost him up and not bring him down. He still doesn't talk much about everything but I do think he is depressed. A Child Life professional is planning on working with him in trying to bring out some emotions. He'll ask me every once in a while complicated questions. The latest one was "can I get leukemia a third time?". Wasn't sure how to answer that one but I said "you are so strong Mason and we are gonna get rid of it for sure this time so keep fighting!" Jokes and playing games are part of our daily routine again.

Diane is with him right now. They do a lot of laughing and playing together. He needs that -we all need to see that again.

May God be with you,
Sandy

Monday, January 13, 2003 at 11:44 AM (CST)

These last few days have been filled with frustration and hope. Frustrated with doctors and hope that Mason's body will fight this infection. His lymph node has swollen up since he was readmitted. It doesn't seem to get smaller even though they have a total of 5 antibiotics running through him. Once we see his WBC and ANC go up we hope it'll go down. One of the doctors came in yesterday and said it hasn't gotton any bigger but they need to watch it. Another boys (3) with AML had 3 nodes infected. They had to remove 1. The doctor said they rarely have to remove them but to be prepared. He's the same doc I've been frustrated with. He's probably the most outspoken, liberal doctor on the oncology team. He's a great doctor but tends to literally compare Mason's daily struggles to a game of baseball. Saturday it was "we're tied today". Yesterday it was "we have 6 and they have 5". It would be nice to only have to deal with 1 doctor. Mason's primary is very gentle and compassionate. He'll tell you like it is but with a different bedside manner.

I know many are praying like mad for Mason. Recently, I have been praying too for all those laying a helping hand on Mason. Mason's doctors, nurses and so many playing a part in his healing.

The 1st 3 nights back Mason had high fevers. They tend to occur mainly at night. He'd be very cooperative (which we were all surprised about) in taking his oral med's. I think he finally realizes that the tylenol will make him feel better. The morphine has been increased. He can push his button once every 30 minutes to get an extra kick. We've been encouraged to limit visitors. Zach and Adam miss him and of course Mason misses them but at times he's crabby. Zach and Adam, I think, understand as well as a 10 year old and an 8 year old can. They wait on him and are very gracious to him.

I recently found out another little boy from Buffalo has been here with AML. They are on a short break from the hospital but will return soon. It's been good to meet other families going through what we are going through. We get together and talk. We don't find any answers to this difficult time in our lives but we do find some comfort in knowing each other and talking to each other.

We were hoping to be at the U by now. This phase has been soooo much harder. My daily prayers recently are that Mason feels better and we can laugh and play again soon. I think he has had enough of all of this already.

Love to all,
The Jergens

Wednesday, January 08, 2003 at 12:45 PM (CST)

Just a quick note to everyone. Mason and I are back at Children's today. He has had horrible headaches and a cold sore that won't go away. Dr Steve wants to admit him for a couple days to get rid of the sores and he'll need a blood transfusion. The low blood is why he has the headaches. We hope to be here for only a couple days.

We got great news from his biopsy he had on Monday. There is only 0.6% blasts in his marrow!!!!! Now we just need to get his counts up and the blasts need to stay down below 5% to go to the U and continue on with chemo, radiation and the transplant. A nurse came to the house yesterday to show me how to administer the GCSF daily. It's quite easy.

So, we'll just hang out here for a while. I feel more comfortable here knowing they can give him antibotics through his hickmann. The oral med's are still such a struggle to get down.

I'll write again soon since we will be here.

Love to all,
Sandy

Saturday, January 04, 2003 at 04:46 PM (CST)

Mason came home Tuesday with low counts yet. Dr Steve thought if he continued to drink a lot and eat OK with no temps hed be able to stay home until a least Monday. New Years day was the 1st day I needed to flush his port. Diane and Ken were over to visit. I flushed his 1 line without any problems but when I tried the 2nd one it was clogged. Mason and I spent 4 hours at ER in Waconia. Good thing they had 2 Scooby Doo movies. The next day were scheduled to go to clinic for counts. Mason wasn't feeling good. He complained of a headache. We stayed a couple hours to have fluids run through him, take blood counts and change his dressing. He seemed to perk up. We try and force liquids down him but he refuses at times. Yesterday his line was clogged again so we ended up back at Children's. Zach came with us and was so gracious with Mason. Adam and Kurt went fishing and brought home a bunch of crappies.

We've laid low at home. Only a few visitors. Patty Reiner and Pat Motzko came with a basket of goodies from ECFE. The DeNomme's came today. Mason was asking to see Nicholas. They played on Mason's new foosball table. Mason's been only talking with Jonathon on the phone. Jonathon has had a lingering cold and isn't able to visit.

Tomorrow Mason and I will stay over at my cousin Randy's near Children's. Diane will be there too. Monday morning he is scheduled for a bone marrow biopsy. We are hoping to see only 5% or less blasts in his marrow. If so, we will be able to come home for a week or so. During that week we will go to the U for our workup. They'll need to test his organs to make sure he is OK for more chemo, radiation and the transplant. Adam will need to have numerous tests done too. If it turns out there is more than 5% yet we'll go back to Children's and he'll have another dose of Mylatarg.

A special thank you to all of you who are praying like crazy for Mason's remission. There are so many prayers coming from all over. I spoke to my aunt at St Benedicts in St. Joe today and she assured me that so many of the sisters are praying hard for Mason. There are a lot of sisters there. It may sound crazy but I can feel a power of prayer surround all of us at times.

We'll have test results back yet on Monday so I hope to update everyone yet Monday if not Tuesday. It would be nice if Mason could visit his kindergarten class this week. He sure misses everyone!

Blessings,
The Jergens

Monday, December 30, 2002 at 01:43 PM (CST)

It'll be a month tomorrow that we've been here. Mason's counts are still low except his ANC is going up which means he has infection fighting cells but still has to wear his mask out of his room. 2 days ago he had a lot of bleeding in his mouth. When platelet counts are low he bleeds easily. So, yesterday they ordered platelets. The premed's for the transfusion includes tylonel and benedryl. The tylonel (chewables) are a struggle to get him to take. We've been practicing swallowing nerds (candy) so he may eventually swallow pills. He's asked to cooperate with nurses/doctors every day with taking vital signs, baths, mouth care and much more. I'ts all getting old. I believe he thinks he has no control over anything anymore which is why we have power struggles with the oral medicine. Can't blame him!

The bone marrow biopsy and spinal tap test showed 11% leukemia yet in his marrow. Dr. Steve said he was happy with that. He said he would have been happy with 20%. Another dose of the Mylatarg was given Friday. He had a terrible reaction to it. For 30 minutes he laid in a fetal position and shook with high fevers. We laid together as nurses came in and out often taking his vital signs. This drug hasn't been used here often so staff had to read up on it. It's not very comforting to know no one really was knowledgable on the side effects/reactions. That night we didn't have a very restful sleep but napped the next day.

Adam and Zach spent a couple days at Willmar (my sisters). They had a great time with their cousins. The days were filled with many activities. Marco and Christina are great kids.

Jim and Joanne came up on Friday and stayed at Wasie overnight. Mason had fun playing war with Jimmy. He sure has a great time with them.

Dr. Bruce came in this morning to take a look at Mason. He noticed his ANC going up and mentioned MAYBE going home for a couple days but we'd still have to come in to clinic everyday for blood counts. I have had to be refreshed on taking care of his hickmann and doing dressing changes. I had a bunch of supplies at home from last time but 2 months ago threw it all out. We thought we were all done with that.

Thanks everyone for the messages on the website. Mason sure likes it when I bring them up to his room and read them to him.

God is much more powerful than this disease and He will get us through this one more time! Keep the prayers coming!

Happy New Year,
The Jergens

Thursday, December 26, 2002 at 03:49 PM (CST)

It’s been a roller coaster ride these last few days. After being home for 2 days earlier last week, I drove to Minneapolis (Adam was in a Christmas play at school). Half way to the hospital I decided to call Mason’s nurse to get his blood counts. Stuck in traffic I asked her to read them to me. The day before his blasts ( a % of leukemia) were at 5%. That day they went up to 43%. This alone revealed to us that the chemo treatment didn’t work. Frustrated, angry and uncertain what the docs would decide next, I got to the hospital with the intention of staying strong and not breaking down in front of Mason. It wasn’t easy. That look again on Dr. Steve’s face – I hate that look! Dr. Steve met with Kurt and me. He was very concerned but explained to us a couple of options he was discussing with oncologists nationwide. He still had a couple of unanswered e-mails he was waiting for to help determine the roadmap to go by. There is a very new drug out there called Mylotar which here has been used only 3 or 4 times. It is not a chemo drug but has been known to kill only bad cells. Chemo kills good and bad cells. This drug was given to him on the 16th.

Mason has been given many transfusions. We are having a hard time getting his platelet count up. They tell us it’s due to the new drug. His liver and kidneys have been affected by the drug so they are holding off on giving it again. His blasts are down to 0% now but we’re waiting for blood counts to go up.

On 8th floor they (doctors) try and send home as many kids as they can over Christmas but those (like Mason) aren’t able to be discharged due to their low blood counts. There are so many AML patients here this time(8). We’ve seen the same faces for weeks. Meeting in the hall we ask each other “are we spending Christmas together?”.

Mason’s been blessed with many visitors. Diane (my cousin) has been so gracious and helpful. She and Mason have lots of laughs together. Diane’s brother, Randy has been here often with Ron, Matt, Ryan, Mel and Nicole. My dear aunt Darlene came and brought homemade Christmas treats. Of course the Vouk family – Jonathon is Mason’s best friend. His mom, Janice I have gotten to know well. They are a great family. They brought Mason the cool Christmas tree for his room. We get many compliments on that tree!
My sister Janice and her family came for the weekend. We all enjoyed Marco’s juggling act. Earlier last week Joanne, Jim and Fr. Ed came. Fr. Ed gave us all the sacrament of the sick. Kurt’s mom and dad of course spoil Mason with many gifts. It was also comforting to have 2 close friends, Mel and Sharon come visit us.

Today Mason was put to sleep AGAIN for a bone marrow biopsy and spinal tap. The test results will be available later today. He has lost most of his hair but seems to feeling OK. We try and play lots of games together but these last few days he’s just been wanting to watch Scooby-Doo.

Adam, Zach and I drove down to Nicollet and spent a day at Fr. Ed’s. It felt good to be with my wonderful family. I felt an emptiness though with Mason not being with us. Santa did come though to the hospital Christmas eve and left many gifts for all the boys.

Belated Merry Christmas to all of you. I pray that this new year will bring all of us peace and happiness.

The Jergens family

Thursday, December 12, 2002 at 11:34 AM (CST)

Leaving Mason for a day wasn’t too hard because he is in great spirits and feeling good but being home without him is difficult. Doctors come in daily and say he is doing GREAT but when talking with Dr. Steve
about how well he did throughout the first time he tells me it may have been better if he would have struggled a little, have fevers, infections and a little of what they call graft vs. host disease. His body would have been forced to fight harder to accept the donors (Zach’s) marrow. So, given that, and it may sound strange, but I would like to see him not do so well this time around. One sure learns a lot about the medical field – the hard way when a loved one is ill.


My angel, (as my aunt Joanne refers to her as) Diane is here from California. Diane is my first cousin and one of Mason’s godmothers. She was going to come home for Christmas anyway and when she found out Mason relapsed decided to fly home earlier and stay longer to help us out. She has always been an inspiration to me. She so loves, caring and a very patient person – great help to Mason and me. As many of you may recall my aunt (Mason’s godmother) Joanne and her husband Jim were sooo there for us the first time Mason went through this. This summer Joanne was diagnosed with ALS. She and Jim are going through a lot of changes and are sad they aren’t able to help out like before. They are in the process of building a new house right next to there present home which will accommodate her and her illness. It was very difficult accepting this news when she first told all of us. They, as you may recall are such wonderful people and back then I asked the question “Why?” again! As I have so many times. When I told Joanne and Jim that Diane was coming and wanted to help out they referred to her as an angel from God. She is! Diana and I spent 2 days together with Mason. She is so great with him. We laughed and played together. One night Diane and I went to her brother Randy’s house (my first cousin too). He lives only a few minutes from the hospital. He invited us over for dinner. I can’t remember the last time I ate such delicious food. We had a great time with everyone there. Diane and I returned to the hospital about 10 pm to find Mason wide awake a playing in his room. He has so much energy. We can’t understand it because the chemo has been done for a week now and his counts are at their lowest so he should be tired and not feeling so good.

Watertown is such a great community. Teachers, staff and students have been overwhelming. So many classes are making cards and sending gifts. You are wonderful people! Because Mason was in kindergarten he has gotten to know many teachers and students. It is so comforting to know so many are praying and care for Mason. The support from so many makes it easier to go through this again.

Last journal entry I mentioned the doctors told us the leukemia was found in his spinal fluid. Turns out they were wrong – Thank God! When the surgeon inserted the needle to obtain a sample of his spinal fluid they hit a vein which contaminated the spinal fluid sample. Two pathologists thoroughly examined the sample and separated cells (lengthy procedure) and determined there was no leukemia in his spine. This meant no weekly spinal taps and no chemo in his spine. That was good news!

We are planning to be at Children’s until after Christmas. His counts need to go up before we can consider going home for about 1 week. After being home for a week we will go to the U for more chemo, full body radiation and the bone marrow transplant. It sounds like they will want to take Adam’s marrow this time.

Mason hopes to visit his class for a short time before going to the U. He misses school. His class set a teddy bear in his chair. His religion teacher came to see him the other day (Sue Swartzer). Mason is the talker in the class. Sue said it took the kids 20 minutes to warm up and start talking Saturday morning. Sue brought cards from all the kids.

My good friend Cheyenne came last night to the house with supper – great of course, thanks Chey!
Two other wonderful friends Joy Bolea and Bonnie DeNomme brought meals too. It was so much appreciated and great food. One could not ask for better friends. This is an awesome community. Zach stayed over at the Motzko family’s last weekend. Adam is a good friend of his. What a wonderful family!

A good friend of mine from Watertown, Linda has a special needs child. She has been so helpful to me in trying to understand all of this. She has no real answers either but told me that she believes God gives parents special needs children for a reason. She has an article to give me that she reads often to help her through tough days. She is a very strong person – another inspiration to me.

Please continue to pray. Mason loves when I bring him his messages from this website. Knowing so many are pulling for him helps him and me. Thanks everyone!

Much love to all,
The Jergens

Monday, December 02, 2002 at 02:25 PM (CST)

I never would have thought I’d be updating this journal with anything but good news. Mason has relapsed. His AML leukemia is back. We are back at Children’s. He was admitted Saturday morning and immediately underwent surgery. They put a hickman catheter back in, did a spinal tap and took a sample of marrow from his bones. We got some results back but are waiting for more. They wanted to be 100% sure the leukemia he now has it the same as before. The spinal tap test revealed the fluid in his spine is full of leukemia cells. This wasn’t the case the first time.

The first time we went through this there wasn’t a doubt in our minds that he wouldn’t fight this. I need to get that back in my head. The numbers were more promising before 75-80%. Now it’s 48%. Dr Baker at the U needs to discuss with Dr Steve the options. From what I understand the options are taking it from Zach again, going with Adam or finding an unrelated donor. He may also require full body radiation which we opted to not do the first time. Looking back I wonder if he did have radiation if he may not have relapsed.

Friday we returned from Thanksgiving at Fr Ed’s in Nicollet. Mason had developed a rash on his face and something that looked like pink eye. We went to see Dr. Sweetman in Watertown. She thought he had a sinus infection. I demanded blood counts be taken for peace of mind. She called back and said his WBC was quite high and to go the Children’s. She thought it would be nothing but to make sure. Dr Steve too at first wasn’t concerned until he looked until the microscope and saw leukemia cells. The look on his face as he walked in said it all. I’ll never forget his look and my immediate reaction. Driving home felt like hours. My emotion was horrible anger. Something I didn’t feel before. I am so angry! Why, why Mason? He is so special and has so much love and happiness to give us all. Friday night we all made a point to decorate the tree knowing we wouldn’t be home for Christmas. It was hard to make it fun but Mason cracked jokes and worked harder than any of us on that tree. At one moment I needed to escape, go in another room and just cry. Mason found me, saw I was crying and said “mom do you need a hug?” That alone explains the kind of kid he is. He wasn’t thinking of himself but was worried about me.

We are back at taking it a day at a time. The boys will continue attending school in Watertown. I foresee Mason and me being in Mpls for at least 4 months. After transplant he’ll need to be close to the hospital like before so we may end up in an apartment again.

I know Mason will be strong this time again – he’s already shown it. He made me strong through it the first time. He is older now. Even though he is only 1 ½ years older he understands so much more and is asking intelligent questions like “what if the doctors are wrong mom?” and “why did God give me leukemia again?” How does a person answer questions like that? I have the same questions.

He will desperately miss kindergarten. He has the best teacher, Mrs. Sexton. His best buddy Jonathon Vouk is in his class too. They would get together on days they didn’t have school so I know he will really miss him.

Please pray like mad for Mason. People are asking what they can do. Just pray!!!!


Blessings

The Jergens family

Wednesday, September 18, 2002 at 11:10 AM (CDT)

These last few weeks have been filled with many trips to Children's and the U. Yesterday was our last trip to the U for hopefully a long time. Mason sure has a lot of memories there. Yesterday he went in for his second day of nueropsych testing. He and I visited the 4th floor BMT ped's and talked to a number of people we came to know a year ago when he was there. I realized yesterday, being it was Sept. 17th, that that was the day he was released from the hospital there. He could have left sooner due to his blood counts being high enough but we stayed an extra few days trying to figure out how to get him to take his medicine. One of the Childlife workers did an awesome job working with him and he was released. I recall many struggles yet at the apartment with taking his med's but it sure was better than being in the hospital.

Test results came back from his bone marrow biopsy. Every test they did on him was 100% GOOD NEWS! Dr. Baker said he is like a kid who never had a tranplant! His marrow is 100% donor! We couldn't ask for better results. They took out his port and removed tissue left from his hickman. He has a couple more battle wounds on his chest but we can live with that.

Mason had to miss school yesterday. He had 8 hours of testing to do with a neuropsyhologist. It's routine to test those that have had chemotherapy to see how they are developing. He did great and cooperated well with the doctors. They made it somewhat fun with puzzles and computer tests. They found nothing abnormal. Every year he'll be tested. Kindergarten is going well so far. His best buddy is in his class which makes it that much more fun in school.

We will return to Children's in October for a checkup and somemore immunization shots. After that we'll go back every 2 months for blood counts.

Thank you all for all your prayers this last year and a half. Currently our family is going through another hard time. You all, I'm sure remember Mason's wonderful loving Godmother, Joanne. Joanne and Jim helped us out tremendously during Mason's illness. She is having many tests done and needs lots of your prayers. We all love her dearly. Her and Jim are such caring and loving people.

Check out the new pictures of Mason and his brothers from our visit to the U in August and his special day we celebrated - 1 year cancer-free. I will add new pictures next month when we go the Children's.

Blessings and love to all,
The Jergens

Tuesday, September 03, 2002 at 11:43 AM (CDT)

Can't write much now but I have posted new pictures in his picture albumn. They are taken the day he went in for his surgery. Don't you love his hair!!!!! He does!!!

I'll post results from his biopsy soon.

Blessings,
The Jergens

Monday, August 05, 2002 at 10:27 AM (CDT)

It has been soooo long since I have updated everyone on Mason. The summer is so busy!

Mason continues to be a strong and resilient little guy. He really isn't little any more - 58 lbs! He's gained 10 pounds since his diagnosis little over a year ago.

His loving words, expressions, hugs and kisses keep me going every day. After all he has gone through it's amazing how his attitude has remained positive and happy.
He'll forever be my little hero!

We are at Children's today for a monthly checkup. In a couple weeks he will go to the U one day to have tests done on his kidneys, heart, lungs before the bone marrow biopsy is done to confirm his remission. There is no reason for us to believe the cancer has returned due to his good blood counts.

Keep praying for him and for our family!

Thank you everyone for the great support and prayers!
Much love and peace to all!
The Jergens

Thursday, May 16, 2002 at 08:22 AM (CDT)

This week has been a week of many emotions. Hard to believe it's been 1 year since we were told Mason had leukemia. For those who had never heard the story, it all started with a red spot developing on his foot that was creeping up his leg. we brought him in and Dr. Sweetman gave him 2 shots of Zithromax - one in each leg. 2 weeks later Adam had a birthday party with friends over night. All the boys were playing on a hill in our yard. Mason fell down the hill and hit his elbow on a rock. To this day we consider that fall a sign from God. If it wasn't for that fall I always wondered when we'd have found out he was as sick as he was. The next morning Mason couldn't move his arm. It was a Sunday so our only option was to take him to ER. The doctor put a split on his arm and told us to see Dr. Sweetman on Monday. When Dr. Sweetman took the split off his elbow was bright red which meant he had a terrible infection. Immediately Dr. Sweetman admitted him to Waconia hospital and said he needed IV antibotics for a day and he'd be fine. I had to leave him at the hospital for a couple hours to take the boys to eye apptmts in Plymouth and when I returned home Dr. S left a message for Kurt and I to meet her at the hospital ASAP. I can still remember my reaction- leukemia! Must have been a mother instinct. I will never forget the moment Kurt and I sat down with her in the room next to Mason's. When she said the "C" work (cancer), I broke out and sobbed - leaving the room and walking down the hall until I ran in to a friend that worked there. I was in denial that whole night. My friend, Jen walked us to our car that night. She hugged me and assured us everything was gonna be OK. Mason left the hospital with us late that night with his IV still in his hand. We wanted him to sleep in his own bed that night in case he was gonna be in the hospital for a long time. We were to leave bright and early the next morning for Children's for the biopsy that would confirm he had leukemia. Dr. S. said she thought he had ALL - the more common type of leukemia. I sat outside the short stay room where Mason was put to sleep to perform the biopsy. They took a small amount of his bone marrow which confirmed his initial diagnosis. But it wasn't ALL it was AML. I remember first calling Kurt and next calling my sister, Janice, both were waiting for my call. That same day they put the central line in and started chemotherapy. It all happened so fast. Mason cooperated pretty well with everyone but I still remember struggles the first few days with going to the bathroom and pain that occurred after the line was put in. Dr. Steve met with us that night. That night also Jim and Joanne came to Mason's room just in time to hear everything Dr. Steve told us about what the next few months were going to entail. Every day at Children's was like attending classes to become a nurse. We were given a handbook with so much information. The nurses met with me every other day or so to go over the material I needed to know - mainly understanding his blood counts. I soon later was thrown in to changing his dressing on this central line. It was sore at first so he had a hard time letting me clean it and change it cuz it hurt when the alcohol was rubbed on his skin by the whole. So many times I'd have to walk out of the room and let the nurses handle it. Seeing him in pain and struggle was heartbreaking but there wasn't anything I could do but pray and take it a day at a time. That was our moto - take it a day at a time.

The boys had to go through a series of blood tests to see if they would be Mason's donor for the transplant. We didn't know until his 4th birthday that that was the route we were gonna take - bone marrow transplant. We were told that Adam and Zach would be better candidates than Kurt and me for the match. Dr. Steve came in Mason's room on his birthday. He knew it was his birthday. He said "Mason I am late for a meeting but I had to come and give you the news - your brothers are both a match to your marrow". He handed me the test results and was amazed at how well he was handling the chemotherapy. One day as Mason was cruising the halls on the tricycle Dr Steve said "Mason, I'm gonna have to check your chart and see if they are giving you the right dosage of medicine cuz you shouldn't be feeling this good". The nurses were impressed on how well he adjusted to his long-term stay especially when his blood counts were so low that he couldn't leave his room. Without the wonderful staff at Children's he wouldn't have adjusted so well. Mason still talks about Toby, one of the CSA's on 8th floor. He goes to school in Fargo and wants to become a doctor so he only works there in the summer. We are hoping to see him this summer. Even Adam and Zach say "we miss Toby".

Much of my emotions come from thinking about the wonderful support we had during this time. Without the help from our family's and friends. I know things wouldn't have gone so smoothly. Jim and Joanne came every week to relieve me and allow me to spend time with the other 2. Mason developed a great relationship with both of them. Because of Jim's bat and ball creation Mason may become the next Kirby Pucket. My sister and her family came several times and spent time with the boys which helped out greatly. Kurt's mom spent many days driving to our place to get the boys to school, pick them up or take them to the farm. The generosity of so many touched all of us and got us through this journey.

It's hard to believe from looking at Mason that he was at one time a very sick little boy. After he was born I decided to quit my job (which I loved) and stay home with him. He has filled my life with much joy and love. Many believed he was too attached to me for the first 4 years of his life. This was probably true. I do not regret spoiling him like I did. I do not have favorites but it's hard not to treat Mason different after all he has been through and after knowing we may have lost him. I thank God every night for keeping him with us. He gives me and many others much love.


God Bless!
The Jergens

Saturday, April 27, 2002 at 11:25 AM (CDT)

Finally got to the computer this week. It's been a busy April with so much happening. Adam had his First Communion early in the month. Kurt's been extremely busy with his landscaping and now paving. Every year at this time Kurt's jobs start up all at once. Too bad he can't do some of it over the winter months. The boys have even been helping him at times - those simple jobs. I just sold my first BIG rock! It was so fun to blast! A family in Long Lake wanted an address marker (rock) that couldn't be moved (stolen) at the end of his long driveway. It turned out great. I also made one for us that reads "THE JERGENS". We hope to place it soon. I'm really enjoying my new hobby but wish I had more time to work on it.

Mason has been socializing these days. He has a "Best Friend", Jonathon, who he talks about all the time. They are great buddies and play so well together. Being in ECFE (Early Childhood Family Education) has been so wonderful for our family. Next year will be an easier transition to Kindergarten because he has had that experience and knows the school a little bit. I'll sure miss him though. Mason and I play games most of the day. I try and spend as much time as I can with him yet still get things done around here. Knowing he'll be in school next year - 3 full days a week, I want to take advantage of this time together. Mason spent another day down at the valley with his godparents Jim and Joanne. Of course they had their traditional bonfire and hike. We hope to all go there during berry season.

This week Mason has an appointment at Children's - just a follow-up. We will go there once in May, June and July. In August he'll have his 1 year bone marrow test - hard to believe it has been 8 months since the transplant. Last year at this time we didn't even know he was sick. So much has happened since then. Our views on our lives have changed dramatically. Every night I ask God to continue to keep us all healthy. It won't be until Mason is 10 that we can truely be at ease about his health. Seems like a long time!

A couple weeks ago Theresa our school nurse called to let us know there has been a couple cases of chicken pox. Mason goes to that school twice a week. I spoke to Dr. Steve at Children's and he thought it was OK for him to go to school. A couple days later Adam came down with spots all over him. Kurt and I were convinced he had chicken pox. I was gone the night Adam broke out with the spots so Kurt was on the phone with Dr. Steve and Dr. Srinavasin (Waconia). I was preparing to go to Children's the next day with Mason for a series of shots he would need plus be admitted for a couple days. Turned out that Adam had a rash due to strept throat. Dr. Sweetman right away knew it wasn't chicken pox by looking at the rash. We were relieved!

On St. Patrick's day Kurt had his head shaved and raised over $600 in 2 days for
Children's Cancer foundation. It was a huge event at O'Donavan's Pub in Minneapolis. I hope to get a picture of that night on the website when we go to Children's next week. He intends to be shaved every year and the boys decided they will too next year. The shavees in Mpls (17) together raised over $25,000.

Happy Spring!!
Much love to all,
The Jergens

Wednesday, March 27, 2002 at 09:59 AM (CST)

I've been debating whether to keep the website for Mason. I don't update it often and he is doing sooo well! Seems as though everyone knows he's doing so well and there really isn't much to tell (medically anyway). However, our lives are far from boring. Mason seems to be the healthiest of us all. I think I will continue the website. It is a good way to communicate with those close to us yet far away. Also, it'll force me to write once a month or so. Because Mason is only 4 now he'll enjoy reading these journal entries when he is older and can understand more and maybe trigger his memories. I find it therapuetic to write.

One medical update on Mason is that he will need all his immunization shots he has already gotten, over again. He can not start them until 1 year from his bone marrow transplant. Poor guy! Only a few are given to him at 1 year and the rest at 2 years. Mason will begin kindergarten next year. His doctor at the U said if he is exposed to chicken pox he will need to be hospitalized and given a 2 day dosage of IV drugs. My question was how can we keep him away from that when he'll be in school 3 full days a week. I am working with the health care professionals at school on this. Home schooling may be an option but I think he needs to be with kids his age. I was make aware of this recently. Mason is in "More for 4's". He loves it. Hard to believe cuz a year ago he refused to seperate from me - he was in "More for 3's" then. One friend, Jonathon haas been his best buddy lately. It was cute watching them in school last week. They play so good together. He also has his Godfather Jimmy to play with and they certainly have a great time together. A couple weeks ago Mason spent 2 days at Jim and Joanne's (the valley). Godfather Jim hoped for a lot of snow so they could play in it but Mankato only got 3 inches. They spent a lot of time playing games inside. They did get to the valley though and had a great time sliding.

Another change in Mason has been his new do! Hairdo! They told us his hair may grow back a different color and maybe curly. Well, it's about the same color as before but it is curly!

This week the boys are home from school on break. We have a lot planned. Friends coming over, dentist, eye doctor apptmts. Zach's birthday is the 31st and we will celebrate at Fr. Ed's in Sleepy Eye along with his cousin, Marco's birthday.

Please continue to keep Mason in your prayers. Happy Easter to all and God bless.

The Jergens

Saturday February 9, 2002 10:47 AM CST

I meant to add a journal entry over a week ago. After returning from our "fairy tale" vacation it was hard to get back in our routines and so many things piled up (like homework and taxes). Things are finally back to normal but we are still dreaming and talking about our trip to Disney.

Disney was awesome - just ask Mason. He does a great job of explaining every show and ride. So many memories! Just seeing the wide eyes and smiles on the boys was fulfilling for Kurt and me. All the Disney parks, Seaworld and Universal were much more exciting and overwhelming than Kurt and I expected. However, the place we stayed at was the ultimate! The village is called "Give Kids the World". That's exactly what they all do there - give kids the world. The village was founded by a man from Belgium. During his childhood he was lead through Germany and other countries starying at numerous concentration camps. He saw his mother get shot, was seperated from his twin sister for years and almost died many times (mainly from starvation). After living through a horrible childhood he choose to start a career in hotel. He worked with the Make-a-Wish foundation and would put up families in his Holiday Inn. After a while it became too much so he bought some land in Kissimmee and built the 51 acre village. There are many buildings on the grounds. Our favorite was the Castle of Miracles. Ourside of it was a Merry-Go-Round which the boys spent much time. Inside were arcade games, toys and a dark room where the star fairy lived. Every "Wish" child was given 2 gold stars - one to take home and one to put in the star fairy's bucket. At night the fairy puts the star on the ceiling of the castle. There are over 50,000 stars. We know exactly where Mason's star is so when we return there we will be able to see it. The icecream palace was another favorite of the boys. It opened at 7:30 am. They could eat ice cream from then until 9pm. There are so many wonderful corporations that donate to the village. Every day Perkins has a breakfast and dinner buffet held in the Gingerbread house. Wednesday night Kurt and I had a parents night out. We were treated to a Polyenesian dinner near Mickey's castle. We saw the fire works and the beautiful colors of the castle. As we enjoyed a night together the boys were playing at the castle supervised by a bunch of volunteers. They have over 2,000 volunteers that come and go all year. So many wonderful, caring people who enjoy helping to make kids dreams come true. Tuesday and Friday night the boys were able to fish in the lake on the village. Zach won one fishing contest. Of course they spoil the boys with presents every day. There is so much to tell about our trip. The Disney parks were great but just being at the village was special for us. We are only 1 of a few families who were there that are fortunate to have a healthy child like Mason. So many families had children in wheel chairs or children who were in between chemo/radiation treatments. Although we still aren't "out of the woods" we feel confident that Mason will live a long happy life.

This week Mason had a check up at Children's. His counts are great! He is gaining weight and feeling good. I had a concern about a bump in his chest. Turns out that when the surgeon took out his hickmann he did not take everything out. They left the cuff which is kind of like velcro. It's not very big but it sticks out. We don't know what we will do as of now. Eventually he'll need to have his port taken out (where they access his blood) but that probably won't be until 1 year is up.

Thank you everyone for your continued concern with our family. Recently a girlfriend of mine told me about a 8 year old girl from Chaska who has leukemia. She had a bone marrow transplant on 1-29-02. Her sister was her donor. The boys and I pray for her everyday and keep up with her prognosis through her website.

God bless all,
The Jergens

We all gave extra thanks to God this Christmas for helping Mason get through his illness and getting us all through a difficult year. Christmas eve we were fortunate to be able to spend at Fr. Ed's where his masses (especially during Christmas) are full of so much meaning. It was great to be able to spend more time with Fr. Ed this year now that he has an assistant to help with the many masses. Of course Jim and Joanne, Jan, Enrique, Marco and Christina stayed at Ed's too. The cousins had a good time playing together and many of us slept around the Christmas tree hoping to see Santa. We must have been pretty tired that night because he seemed to leave the presents without any of us knowing.

Christmas day we spent with Kurt's family. It was a pleasant day spent together. The boys, of course got too many toys.

Mason recently spent time with Jim and Joanne at one of his favorite places - the valley. He is still talking about his trip there. Jim and he took a few trips (walking) down to the valley where they had good times. Roasting marshmallows, collecting rocks, making walking sticks and seeing deer. He was exhausted by the time he got home.

The Fed Ex man just came and brought Mason a huge box with a few goodies from Make-A-Wish. Mickey Mouse, almost as big as Mason was the main surprise. They also sent him a Mickey sweatshirt with his name on it. It sure is a great organization. The boys are counting down the days till we leave for Disney World. I'll have to post some pictures from our trip on the website.

Our love to all,
The Jergens

Friday, December 21, 2001 at 11:20 AM (CST)

Merry Christmas everyone from all of us.
I haven't wrote lately due to so much going on. If you saw the pictures you could see that we were back at Children's for 1 night. Just a little constipation problem. We can handle that! The doctor at Waconia sent us there because of Mason's medical history. It was good to see a lot of the nurses we haven't seen since back in July. We also saw Santa!

Mason's doing great! He is full of energy and we have been enjoying the wonderful weather by having fires on the patio almost every day. Mason's gotten pretty good at hitting the ball too. Who would of thought that we'd be playing bat and ball outside right before Christmas.

Sounds like the snow is coming. We hope to get to Sleepy Eye this weekend (Fr. Ed's place). We may leave early just to make sure we beat the weather.

During this Christmas and always may peace be the special blessing that is in all your hearts.

Love to all,
The Jergens

Saturday, December 08, 2001 at 06:39 AM (CST)

We received all good news from the bone marrow biopsy Mason had on Nov. 30th. He remains in remission and his marrow is 100% donor (meaning his bone marrow is all Zach's). Eventually Mason will have the same blood type as Zach.

Mason and I went to the U for the last time until March. We will be going to Children's starting next week. It'll be good to be back there and visit the nurses on 8th floor. Thursday at the clinic they didn't take his blood out of his port because the tape didn't come off yet and they feared contaminating if they went through the tape so we'll wait till next week to find out his counts.

We've all been enjoying the weather. Mason loves to have fires in our fireplace outside and these last few days have been perfect for that.

Kurt, Mason and I went to Drop In and Play at school Friday. Mason sure enjoys going to school to play in the gym and make things. It was good to see some kids and moms we haven't seen for a long time.

Dr. Baker said that with Mason's protocol he will not have to have a biospy again until 1 year of tranplant. August 20th was tranplant day so he won't have to go through that again for a while.

I belief prayers from all of you have healed Mason and reduced his pain throughout his hospital stays. We are forever grateful for all those prayers and support. Mason is quite young to remember and understand this journey of his life however because of this website and all your messages he will forever be thankful for being there for him.

Eventually I will get together a scrapbook for him to have forever. So many pictures throughout these last 6 months will help him recall good and bad times. Mason's illness was difficult for all of us but I believe it has strengthened us. Before Mason got sick and I would see a child with cancer I would think "oh, how aweful for that family and child but that will never happen to our family". It can happen to anyone. I still have yet to find out why. Why Mason? He seemed to be the healthiest of the 3 boys. Maybe God has a plan for all of us and with Mason God chose to give him cancer to make us realize how important life is. Mason's life has forever changed because of his illness. Others lives have been affected by his cancer also. To look at it in a positive way, I thank Mason for being so strong and resilient. Because he got through these last 6 months so well I look up to him and hope I can learn from his courage.

I will continue to update the website and since we will be going to Children's now, I can use their digital camera and put up new pictures.

Merry Christmas everyone! Love from Mason, Zach, Adam, Kurt and Sandy

Saturday, December 01, 2001 at 10:23 AM (CST)

It's day 103 today. No more acyclovir or nystatin 5 times a day. I feel like I have more time during the day to get things done and spend time with Mason because I am not chasing him around the house trying to get him to take his medicine. To think we did that for 100 days! He sure got good at stalling!

Yesterday he had his bone marrow biopsy, hickman taken out and a port put in. Thursday night Mason and I spent a couple hours at Camp Snoopy. We had a great time on the rides. After bumming around at the Mall we went to the Wasie Center (hotel connected to Abbott) and stayed over night there. We woke up at 5 am and went to Fairview where he was put to sleep in OR. At about 2 we finally got out of there. He did so well. I think he is so used to doctors and nurses by now that nothing bothers him like it used to. He has 4 big old pieces of gauze on his body. Three on his chest and one on his back where they took out his bone marrow to be tested. We will have results by next Thursday when we see Doc. Baker. If all turns out OK we won't have to go back the the U for 6 months but we will be going back to Children's every week for blood counts. We are all optimistic that he is still in remission.

Because we are over day 100 he doesn't need to wear his mask outside or when we go places. Although, when we are at a store or in the mall I think we'll still have him wear it for a while yet. He is excited to start preschool after Christmas. He needs to be around other kids and the ECFE program at school is a great program that we have been a part of since Zach was a baby. The teachers and staff are great - we have missed it.

I hope to update Mason's journal by next Friday to give everyone the good news about the bone marrow biopsy result.

God bless all during this holiday season,
The Jergens

Saturday, November 17, 2001 at 10:40 AM (CST)

Lately it seems that days are going by so fast and there is no time to do much but catch up on things. However, Mason, Zach and I were able to enjoy nature and good company last Tuesday when we went to the valley - Jim and Joanne's place near Mankato. The last time we were there was before Mason's diagnosis. The boys at that time too had such a great time climbing, skipping rocks and collecting odd pieces of nature. So many stories told by Joanne and Jim during Mason's hospital stays were about the valley so one can imagine how much this visit to the valley meant to Mason. After hiking in the valley, the boys and Jim built a bonfire and we had smores. It was a great time had by all.

Zach returned to school on Wednesday. He still feels a little run down but is healing well. It's been hard for him to see his friends play outside when he can't.

Mason and I went to his weekly clinic visit on Thursday. He received his chemo drug and the doctor says he is doing great! The 30th he'll have his biopsy and his hickman removed and replace with a port. The biopsy will tell us if he is still in remission and how much of Zach's marrow took over Mason's. The results take about a week. That has been the hardest - waiting!
. My aunt, Mason's godmother, Joanne Ardold Decker recently published her second book titled "Prayers from a Seasoned Heart". The book is full of past experiences in which she talks to God about many issues. Joanne is a retired professor of leisure services at MSU. Joanne's book has much meaning to our family for it includes many happenings throughout her life which we too have experienced. Joanne's wonderful husband Jim (Mason's godfather), helped her with the book. Joanne also wrote a book titled "Making the Moments Count: Leisure Activities for Caregiving Relationships". I have always been so proud of Joanne and her accomplishments. God gave her so much talent and we (her family) are so grateful to her for sharing her talents with us. This portion of her book was written shortly after Mason was diagnosed with leukemia. Both her and Jim are truly gifts to us from God.

Why?

When human beings have finished, they are just beginning, and when they stop, they are still perplexed. Sirach 18:7

Why is this happening, Lord! The littlest guy in our family is critically ill, and everything else in the world is insignificant right now. Although I am struggling to believe in your love, Dear God, I bring him and our entire family to you. Why do such hard things happen? I am perplexed! Medications, treatments, intravenous hookups, doctors, nurses, diagnoses, prognoses, and all such are overwhelming us. Please wake me from this bad dream that consumes us, blending days and nights into a misty future.

We are in family crisis mode, and, although we're all doing our best to help, few of us know exactly what to do. We need wisdom in the midst of our tears. I realize that we have been in crisis before, . . . other painful illnesses, untimely deaths, miscarriage, accidents, a fire . . . and we made it through all those with your loving care.

But, he's so little, so special, and so ill. Why couldn't you let this happen to an older one in the family - like me, Lord? This isn't right! We who have enjoyed many seasons in this world have already partaken of your generosity. We want to see the young ones enjoy the same gifts of life. Oh, please, heal him and give him length of days to know and love you and your precious world. Oh, how I wish I could take his place.

Prayer

Oh, God of Life and Love, I place our cherished little one and our family in your hands. Gift us with your exceptional healing of the physical, emotional, and spiritual wounds of this crisis. Only your love can sustain us now. I pray that our family will grow closer to you and to each other during this difficult time, and I trust that your will bring good out of this chaos. Let me be still and know that your will has no why. Amen.

More to Pray About

No matter how long we live, the question, "Why? plagues us without an answer.

1. When in my life did I find myself asking the question, "Why?" What answer did I come up with?

2. Are there situations these days that leave me asking the "why" question? How am I answering it?

3. How have I responded to family crises in the past? Are there particular ways that I can be helpful in the midst of family crises?

4. Can I be helpful to some other family that is currently in crisis?



The book was published by Resurrection Press.


At the end of each section she has "more to pray about" questions that we all can reflect on. Questions that we may never have thought about and those questions we answer may help us in our daily lives.

I have given many books to people I think will enjoy them. If any one is interested let me know. It's a book one can read over and over again.

Happy Thanksgiving to all,
We certainly have SO MUCH to be thankful for!

The Jergens

Thursday, November 08, 2001 at 06:33 PM (CST)

We've lost track of what day it is. I think it's in the 80's now. We kept track before because 100 days was the magic number and meant we could move home. Well, we are home so it doesn't seem to matter much anymore. I do know that Nov. 28th Mason goes in for his 100 day bone marrow biopsy. Since he'll be put to sleep for that we and the doctors decided to have his hickman taken out and replace it with a port. With the port I will not have any dressing changes every other day and no more flushing his lines with heparin every day. It'll be virtually no maintenance plus he'll be able to swim every Sunday at the high school pool with his brothers instead of watching 'em from the bleachers. Taking medicine is going OK. I think I forgot to mention the tube is HISTORY!! He's been taking all his med's orally. One day the tube popped out a few inches again. We were at home this time in Watertown. So, I took him to Dr. Sweetman. He was upset and moving around so much as we waited for a nurse to come in and fix it that eventually the entire tube came out of this nose. Dr. Sweetman called our primary oncologist at the U and he sugguested to leave it out till morning when he was to go in to the U for his clinic apptmt. It was actually a blessing it popped out. The nurses talked him in to taking it orally and leaving the tube out. There are still struggles taking the med's but now there is no more worrying about it clogging, popping out or not being in the right position in his stomach. Oh, and how much more handsome he is without it!!

Zach had his tonsils out Tuesday. Poor guy 2 surgeries in less than 3 months. He'll be home from school for a week. The doctor said it was a good thing he had them out cuz they were infected and very large.

Mason's hair is growing back. I will try and get a picture of him on the website soon. It's hard to say what color it's gonna be but it almost looks darker than it was before.

All our love to everyone. We hope to get out and visit more after day 100. We are still trying to avoid crowds so he doesn't come in contact with many germs.

Love,
Sandy, Kurt, Zach, Adam and Mason

Monday, October 29, 2001 at 12:18 PM (CST)

Hurray, we're home!!!!! Doctors gave Mason the OK to move back even though it's only day 70 or so. He's doing so well and we're only 50-55 minutes away from the U. He has shown no signs of graft vs. host disease, no fevers or infections. It couldn't be going any better than it is.

Friday was bingo night sponsored by Watertown/Mayer Elementary teachers and staff and the Watertown Lions club. They all did an awesome job of arranging everything. It was a great night! Thanks everyone for all your time and work. It was great to see so many people we hadn't seen for so long. We feel so priviledged to live in this community. There are so many caring and supporting people here.

Mason stayed at the apartment Friday night with, of course our 2 Godsends - Jim and Joanne. Mason and Jim played most of the time. The people that live in the apartment below us are going to be glad we are gone. Mason has so much energy and tends to make a lot of noise at times playing hide and seek, and cowboys and indians. When we returned to the apartment on Saturday Jim and Joanne had all the rest of our stuff packed up and ready to go. It was great!!! Even though it was a big adjustment moving to a big city after living here in this quiet community for so long I felt a little sad leaving. That part of our lives will always be a memory. Not all bad. Mason and I will miss walking to the clinic (1.5 miles one way) over the Mississippi river. He'd spell "Mississippi" over and over on the way. We would have our landmarks to stop at and of course we'll always remember collecting rocks along the way to throw in the river. He may not remember everything but my memories along with Kurt's and the other boys, and the pictures we took will help him remember some of that time in his life.

We have so many people to thank and I don't want to leave any one out. Thank you's are getting out to people slowly. We want to say a special "thank you" to those at Master Craft Labels. What a great bunch of people I used to work with (and often go back to visit). They all have been a big part of my life for so long. One could not find a better place to work at.

We may be going to Disney World this coming winter. Mason received a letter saying he got his wish. Should be a great time for all of us. We sure have a lot to be thankful for.

Blessings,
The Jergens

Tuesday, October 16, 2001 at 03:58 PM (CDT)

It was quite the day Saturday. So many people we hadn't seen for so long. Thanks to everyone for everything. All those that worked so hard on putting it all together - Karen and Al, Sandy, Nancy and Shea, Joni, Linda and Ron(owner of Ruby's), Deb,Tom (owner of River's Edge),Lisa Chadwick, Jim Bart (editor of the newspaper) my sister and her family, Kurt's family, the band (what an awesome sounding band!!!), all those who donated and spent the day with us. Seems as though the kids had a good time doing so many different things throughout the day. The golf carts were a big hit thanks to Loren and Patty Yurek. So many enjoyed the massages from Molly. I still have yet to get mine. Jim and Joanne for watching Mason over the weekend. He sure had a great time and misses them already. Kurt and I feel so grateful for having family and friends who care so much for Mason and our family. We hope we can in turn help out others some day who may go through similar difficult times in their lives.

Mason had 2 visitors today from Make-A-Wish. They brought him a big bag of toys. His brothers also got a bag of goodies. His first wish is to go to Disneyland. We will find out in a couple weeks. We may not go until 2003 - depends on what the doctor says.

Last night Mason's tube pulled out about 5 inches. I called the hospital at 3 in the morning. They told me to push it back in. Mason didn't like that idea so I waited until the morning and brought him in the clinic. My Make-a-Wish is to have Mason take his medicine orally so we can get rid of that tube. It's become a struggle to even give him his medicine through his tube.

We've been going home more often. Over MEA we'll be home most of the days except Friday when we have to come back to the clinic for lab work and his weekly chemo IV drug. Joanne gave us some tickets to Spooky World so Zach and Adam will go there sometime over the weekend.

The Lions Club and the Elementary school are hosting a bingo night for Mason on the 26th at the community center in Watertown. It starts at 7:30 and ends at 10. Should be a fun night for the kids.

Thanks again to everyone. It was great to see so many people we haven't seen for so long. I have a hard time accepting help, gifts, etc. from people but a friend of mine helped me find acceptance. She told me to prayer for those who do for you. So I have been up many nights praying for all of you who are so supportive. I will continue to pray - my way of thanking so many.

Our love to all,
The Jergens

Friday, October 05, 2001 at 07:40 AM (CDT)

Mason's blood counts continue to look great! Earlier this week he had been having a lot of leg pain in the middle of the night. After talking with the doctors about this they suggested he have a bone marrow biopsy AGAIN to make sure the leukemia did not return. Jim and Joanne came down on Wednesday for the procedure. Along with the biopsy they also decided to do a lumbar puncture to check for anything unusual in his spine. All the preliminary tests came back good. There is no sign of a relapse!!! The doctors wanted to just make sure and I'm glad he had it done now. We can now be at ease. Some of the medicine he is taking may cause leg pain.

I neglected to mention the date of the benefit last journal entry. The benefit is Oct. 13th starting at 9 am (the golf tournament). Silent auction starts at 9 and ends at 4:30. There will be games and crafts for kids from 12 to 4 and a Buffet is at 5 pm. Music begins at 5. A live band starts at 9 and ends at 12.
Oct. 26th the Lions club and Watertown-Mayer Elementary school are hosting a bingo night at the community center in Watertown. It begins at 7:30 and will end at 10pm.

The boys are off of school today. Kurt brought Zach with him to work. Mason, Adam and I will stay at the apartment today. Zach's school is involved in a Marathon tomorrow. He'll be biking 9 miles. At 1PM it'll end and we are going home until Sunday sometime. It'll be Mason's first time since the first part of August to sleep in his own bed.

We had a scare the other night in our apartment building. The fire alarm went off about 11:00. We were all asleep of course. I peeked out in the hall and there were firemen walking around with hoses over their backs. I woke up the boys and carried Mason outside. All the residents were outside waiting for the OK to go back in. Other Fairview patients stay in the same building so I got to meet them. It lasted about 20 minutes. We then were told we could go back in. I hope that doesn't happen again soon! We still don't know if there really was a fire.

Today is day 46 - only 54 days to go!

Lots of love to all,
The Jergens

Saturday, September 29, 2001 at 09:40 PM (CDT)

What a wonderful day! The boys (including Mason) and I went home! Mason's doctor was OK with it as long as we don't stay overnight and we aren't driving in rush hour traffic. Mason and I just returned to the apartment. He is so worn out. The boys played outside most of the day while I cut the lawn and did laundry. They all got along so good. It was cute Adam asked Mason, "Do you remember this house, Mason?".

Yesterday at the clinic the doctor decided to take him off 3 med's. One was for his stomach that he'd take 4 times a day, one was to make him pee more frequently and the other one he isn't to take until next week cuz his liver reading was elevated. He thought a few days off of that med and the reading should be normal again. It sure is nice not having to get all those med's together. His blood counts are great! Things couldn't be better!

Benefit information:

9am-4:30pm silent auction with prizes throughout the day. Games for the kids will be held from 2-4. Brats, fries and refreshments will be available. A table will be set up to receive donations to the Red Cross.

A best ball scramble golf tourney starts at 9am with a shotgun start. Coffee, rolls and juice will be available. A buffet will also be held at 5pm.

The golf tourney costs $15 per person.

A variety of music is planned for the day. CD music starts at 5pm with '50's music, '70's music from 7-8 and '80's music from 8-9. Live music starts at 9pm and ends at 12 midnight.

We look forward to seeing many of you there.

Love and blessings,
The Jergens

Sunday, September 23, 2001 at 07:23 PM (CDT)

We've been home from the hospital for a week now. What a week! Mason sure is doing well! He's eating OK (although he's still hooked up to his "burgers in a bag" throughout the night). I finally feel comfortable hooking him up to his "burgers".

After taking his blood the 1st day at the clinic (Sept. 17th). they noticed his counts were way up so he didn't have to go in the next day. We went M-W-F to the clinic. Most go everyday for transfusions. Mason hasn't had any transfusions since being discharged. His bone marrow biopsy result was excellent. His marrow is 100% donor and he's in remission - no signs of leukemia!!!!!!!!!!!
Doesn't surprise us that he is doing so well. He's a fighter!!! And, of course with everyone's prayers and support how can he not do well.

I woke this morning not feeling well. I later took my temp and it was 100 degrees. I called Mason's doctor and all I can really do is wear my mask around him and hope he doesn't get anything from me.

Of course Jim and Joanne were here about 3 days this week. Mason and Jimmy spent a lot of time on the computer together and just hanging out. Joanne made cookies, dinner and helped out with many things (as did Jim). They have learned how to give Mason his med's through his tube too.

His tube got clogged one day. I realized it was clogged just when the boys were gonna get off the bus so Jim went down to meet the boys while I took Mason in. He had the tube replaced. They will clog now and then. Some of the med's are quite thick and even though we thin em with water they can still get clogged. It's so heartbreaking to see him being held down to get the new one in. If only he'd understand that if he took em by mouth we wouldn't have to worry about replacing the tube.

I am overwhelmed with so many people volunteering and donating for the benefit. Karen Leuthner informed me that so many have called her wanting to help. What a good feeling to know there are so many who care.

My cousin Randy Dostal brought a fantanstic dinner over tonight. The kids really enjoyed it and I hope to enjoy it tomorrow if I am feeling better.

Have a good week everyone and God bless!
Sandy, Kurt, Zach, Adam and Mason

Tuesday, September 18, 2001 at 03:58 PM (CDT)

I'm gonna make this short cuz I don't have much time to go in to detail.

Mason is home from the hospital (not our regular home as he would say). He got discharged on Sunday. He is doing OK- better than I am. He still has his feeding tube in his nose that I use to give him his MANY med's. He's not eating much yet so he is on what's called TPN at night, running 12 hours. I have been learning so much. My friend Kathy Chapman called today and I told her I wish I was her. She is a nurse at the U. Last night didn't go well with the TPN(the first time hooking him up myself). There are so many steps to take to get it all going. The homecare provider ended up coming over to help. Seems as though something happened that happens occasionally and it was nothing I did wrong. Thank God for that. He had some blood appearing from his line that wasn't supposed to be there so I freaked! Hopefully it'll go better tonight. Kurt calmed me down when it happened and we waited for the nurse to show up which seemed like eternity.

Mason misses his brothers while they are in school. He asks about them every hour on the hour.

So many people are continuing to keep us in their prayers - thanks soooo much. The prayers, I believe have helped tremendously! Mason continues to be strong and continues to keep me strong throughout all this.

Oh, by the way, Zach's tests at the U came back OK. The pulips may or may not go away on their own. If they don't he'll have to have them removed. At least it's not cystic fibrosis. I hugged him like never before when we got the news.

Love to all,
The Jergens

Tuesday, September 11, 2001 at 04:41 PM (CDT)

Today was a horrific day in our history which seemed to be an appropriate time to post the meditation my aunt (Mason's godmother) Sister Miriam wrote on Mason. She writes meditations for the "radio clips" that the monastery has for the local St. Cloud radio stations. She is one of several writers and the meditations are aired each weekday morning on several St. Cloud stations:

I have been blessed with a grandnephew who just turned 4 years old.

Appartently Mason is being asked to do two major things in his life right now - one, to be heroic in suffering and , secondly, to teach us about suffering and caring for each other.

Mason has a serious, aggressive, rare leukemia. For several months now Mason has been a hospital patient receiving chemotherapy and very recently, had a gone marrow transplant, thanks to his oldest brother, Zach. The chemo treatments still continue with some very painful side effects and isolation in a hospital is no fun.

But Mason's care-givers continue to be edified seeing his positive attitude amidst pain, his cooperativeness when he is too young to understand, his ability to put the pain aside and get involved in a game or a cartoon or listen to stories or play with some toys.

I am guessing that all of you hearing this story know of persons who are suffering with intense physical or emotional pain and most often we don't know how to help. Mason's family is finding it helpful to know that there are many people praying for them; a short telephone call to let them know they are not being forgotten helps; a dinner delivered to their home or to persons assisting with the cares relieves some of the worry; an understanding that while one member may have the illness, the lives of all the family members are challenged.

We are truly all members of the Mystical Body of Christ and when one suffers, we all suffer. Challenge yourself to help those needing help. Prayer is a great beginning.
------------

Sunday, September 09, 2001 at 05:20 PM (CDT)

Up until yesterday everything has been going so well. Most of Mason's medications have been given through his IV but Friday the doctors ordered them to be switched to oral form because his counts are up and he's doing so well. All of that being signs of him being discharged. Tomorrow was gonna be THE day but now it looks like later this week - maybe! We have to get him to take his medicine before he can leave. He'll need to take 10 different oral medicines a day. It's been taking hours to persuade him to take 1 and many times when he does take it it comes up shortly after cuz he gets so worked up about it. Because he hasn't been able to keep the med's down they decided to put another tube down his nose to administer the med's that way. Well, after a long ordeal they finally got it in. A couple hours after the procedure when he had finally calmed down they put 1 medicine through the tube but he threw up the tube along with blood. The blood, they tell us, is probably due to the tube scrapping sores in his throat or stomach (from the chemo). What a scene that was. Thank God our Care Partner was here to comfort me and Adam at the time. That was the first time we had met. She will be helping us out until we leave in November/December. What a wonderful person she is. For many years she has volunteered her services to BMT families. After visiting with her I told her that it sounds like she just gives and gives and gives. She really wants to start to get to know Zach and Adam and help us out by spending time with them while I need to take Mason to the clinic, etc.

Sounds like we'll be moving up to 5th floor tomorrow. There is another patient who needs to come to this unit so they are kicking us out. We'd be able to go to the apartment if he'd be taking his medicine but cuz he's not we are stuck here. However, I just got off the phone with Joanne and then Janice (my sister). She had a wonderful idea and after talking to her I immediately grabbed a doctor to ask his opinion. Janice wondered if maybe he was hypnotized by a professional hypnotist to take his medicine. When I approached the doctor I told him it was an "off the wall request". After I asked him he thought it was a great idea and would look in to it. We're willing to do anything. I had to take a class today about giving Mason TPN
(a nutrition IV) every day until he is eating. Wow, how overwhelming! During the class I'm thinking how am I gonna remember all of these steps and do them right.

Hopefully the next update will be filled with great news! We need to stay positive!

God Bless you all,
Sandy

Wednesday, September 05, 2001 at 11:39 AM (CDT)

Mason's counts are way up there but it seems as though he's feeling worse than when his counts were low. Mainly, he's been complaining about his stomach hurting. We were hoping that since he has more white blood cells he'd be feeling better. Jim and Joanne just left this morning. They offered to come down yesterday so someone would be with Mason while I took Zach to Waconia for the tests. Zach didn't get to school till 2:30 and Kurt didn't come down last night so Joanne stayed with Mason while the boys, Jim and I stayed at the apartment. Joanne said Mason had a lot of pain throughout the night. The hardest part of being here has been seeing Mason in pain. He has been through so much. I believe after this God will say "that's enough for quite a while for you Mason" . I believe also that God has a plan for all of us and sometimes bad things happen to good people (my friend Lori Jo's belief). Good will come out of this bad situation some day. I never knew I could be as strong as I have been. So many give me strength - too many to mention. The main person of course is Mason. What an incredible kid!

The boys looked so cute their first day of school in their uniforms. They only complained 1 time as they were getting dressed. Adam came home excited about his friend, Thomas who drew him some pictures.

The boys, Kurt and I have been eating great meals lately thanks to so many. What a great community we live in. It makes it all that more difficult to live here when we have so many friends back home. Only 85 days to go!

Some friends have been asking about helping out with the benefit. I believe Karen has much of it organized but if interested you can contact her at 952-955-1376.

Blessings,
Sandy

Saturday, September 01, 2001 at 04:37 PM (CDT)

It's a perfect time to sit at the computer and catch up on e-mails and update the website. I just got back from meeting the Midtling's at the dorm where their son Brett is moving in to. We went to "Sally's" for lunch. It's my friend, Sharon's youngest. I told her she'll be crying on the way home. It was a good time even though short to be with her and her 3 children.

It's day 12 and there hasn't been much change. Mason is less energetic and more crabby. The sores in his mouth are hard to tolerate. The nurses have increased his morphine and now he's up to 4.0. At Children's his hightest was 5.0. He sleeps a lot which has been OK, especially for us (Joanne, Jim and me). we are able to rest when he rests or do other things. More spare time means Jim can keep up with the market over the internet. We're hoping to see blood count creep up soon. Increased white blood counts especially mean the sores will begin to heal.

Earlier this week Mason received a special gift from some special friends. The Carlson's (from Wayzata) and Collins(Watertown-friends back home whom we have got to know through ECFE) sent him a life-sized Scooby Doo. What a delight it was to see him open the box! Scooby came at a great time. Tuesday seemed like the day when he needed something to cheer him up and Scooby was the ticket!

Thursday and 1/2 of Friday I spent cleaning the house, cutting the lawn and getting things packed for the apartment. The boys did a wonderful job helping outside. As I was walking back from the mailbox on Friday it hit me that that would be the last time I'd spend at home with the boys for a long time. As I approached the house with the mail the dogs saw me crying and didn't know what to think of me. We really love our place and it'll be hard being away.

Zach's been having so many cases of strept throat this last year so I brought him to the ENT specialist on Friday. He has pulips in his nose and needs to have his tonsils out. He also needs to have a couple other tests done to make sure he doesn't have Cystic Fibrosis. I was speechless after the doctor at Waconia told us this. What next? After speaking with the BMT doctor here at the U I felt much better. He thought it was quite unlikely Zach would have that.

Janice and her family came last night for a few hours after spending the day at the fair. She starts teaching next week and will be very busy with her family and life.

The boys start school on Tuesday. The school still doesn't have a drop off and pick up spot for the boys on the bus so I'll drive them for the first couple weeks. Kurt will try and stay with the boys at the apartment most nights so I can be with Mason. After Dr. Baker told us Mason would probably be out in about 1 1/2 weeks I checked the calendar and marked Sept. 10th as THE day! That day is my mom's birthday and would be perfect! This is the hardest part - waiting!

Kurt took Zach to his CT scan in Waconia today and then off to the Jergen's reunion at Lake Minnie Bell. I always enjoy going out there but I need to be here. It'll be the last time the boys will see their cousins - Natalie and Cassidy from Seattle and Uncle Guy for quite a while.

Hope everyone is enjoying the long weekend. I am hoping to update the website on Monday again and include my aunts radio meditation then.

Blessings,
Sandy

Tuesday, August 28, 2001 at 11:16 AM (CDT)

Today is day 8. Mason is now feeling the effects of the chemo. He has a lot of throat pain but his mouth is still feeling pretty good. Overall, the doctors say he's doing especially well.

Jim and Joanne were with him over the weekend. Kurt, the boys and I went to Holly and Jason's wedding and had a good time. Jim and Joanne being the great caregivers they are had a good weekend with Mason. Jim helped Mason release some energy by playing bat and ball in the room. Jim made a bat out of a rolled up newspaper and they brought him a nerf ball. They must have played a lot cuz Mason can sure hit the ball now - he hardly ever misses. Joanne worked hard on getting Mason whatever he craved. One night he wanted meatballs so Joanne went to the apartment to get the hamburger. That night he ate 9 meatballs. We are all delighted he still had an appetite.

The boys are staying with the Motzko family again. They sure enjoy swimming in their pool and of course just being with their friends. Kurt's brother and girls are here from Seattle. Uncle Guy will pick up the boys at Motzko's and bring em out to the farm for a couple days. The boys and his 2 girls don't see each other often so it'll be nice they can spend some time together. Kurt brought the gocart out to the farm so they'll have fun on that. Guy sure has 2 nice girls - Cassiday and Natalie. It's too bad we live so far from them.

I will go home for a couple days tomorrow. Jim and Joanne will come and stay until Friday. Thursday the boys have their open house at their new school. I hope the boys adjust well to their new life down here. It'll be an adjustment for all of us.

Our dear friend Karen Luethner is working hard on a benefit for Mason. It'll be held on October 13 at the River's Edge golf course in Watertown. Sounds like it'll start with a golf tourney at 9 am and after that fun events for the kids. Another friend, Linda (owner of Ruby's restaurant in Watertown) plays in a band. Her band will perform later that night. I will know more within the next couple weeks.

My aunt from St. Ben's at St. Joe, MN wrote a meditation for Mason which I will post on the next update. She came to see Mason over the weekend. Mason has received sooooooo many prayers from all the wonderful sisters at St. Ben's.

Now that Mason has this computer in his room I hope to update the journal more often.

Have a great Labor weekend everyone!

Love,
The Jergens

Tuesday, August 28, 2001 at 09:26 AM (CDT)

Last time I updated the journal from this computer in Mason's room it didn't go through so this is a test run. Hopefully it'll work this time. Today is day 8 and he's feeling the effects of the chemo but is still amazing everyone.

Love,
Sandy

Wednesday, August 22, 2001 at 10:27 AM (CDT)

Today is day 2 - 98 days till Mason can go home. It doesn't sound like a lot but when we figured it out on the calendar day 100 is Nov. 29th. Mason is still feeling OK. There has been some days when he'll have 1-2 hours of an upset stomach but overall he's doing great- considering he hasn't left his room for 12 days now. We watch a lot of Scooby Doo. The cartoon network is on 24 hours a day. We try not to watch too much TV. The nurses brought in a mat for us to play on the floor, build his marble maze or just wrestle around with Godfather Jim. Last week when Jim and Joanne were here they accomplished a lot. Joanne being the wonderful artist she is painted Pichachu's in the valley on his window's. It looks great. I'll try and get a picture of it on the website soon. Joanne also made an angel whichis posted above his bed. When I returned last Friday, the tube was out of his nose. He was off 1 chemo and started the 2nd one which goes in to his IV. This one is the one where he's asked to pee every 2 hours. I was shocked to hear from Joanne and Jim that he was doing fine with it. When he's sleeping they wake him to pee next to his bed in a bottle. He didn't mind and went back to sleep when he was done. Thinking about it I don't think I'd handle it that well. I'm telling ya this kid is a fighter and he's gonna make it!!

Janice and Christina came yesterday. They will stay at the apartment until Friday when Jim and Joanne will come back. I'll come back on Sunday sometime which from what the nurses say may be the start of mouth sores and fevers. We're being
optimistic in thinking he'll do great!!

Zach did great!! He was very nervous though. I woke him up at 5 to go to the hospital. He resisted going but calmed down after a while. He had lots of questions for the doctor and nurses - one being "does it hurt". He was in a room right next to Mason. The marrow was brought up in a bag - a total of about 1 cup. It took less than 10 minutes to go in to Mason. Because of the pre med they gave him he was really tired and slept for an hour. When he woke he was in great spirits and played nintendo with Zach. Both had their IV poles and tubes were all over. The nurses make BMT (bone marrow transplant) day special by giving balloons, stuffed animals and Zach got a certificate. It really was awesome!! Such a simple procedure for a life saving event. I hope to get pictures on the site to show everyone. The University hospital doesn't have digital cameras to use like Children's did so that's why I haven't changed the pictures.

Over the weekend I was able to get out and have a beer with cousins Randy and Diane and Ron and Robin. Even though it was only for a couple hours it sure gave me strength. My cousin Diane is leaving to go back to California this week and we will all miss her!

A special thanks to Jan Guetzkow for the great meal she brought over. Also thanks to the people from St. Mary's for the food they are bringing over. My dear friend Chyrsa Kostecka who just had her 6th child and is an extremely busy lady planned the meal sign up at St. Mary's. What a great family she has! Love to all.

God Bless,
Sandy, Kurt, Zach, Adam and Mason

Tuesday, August 14, 2001 at 07:18 PM (CDT)

It's like a different world being at the U of M hospital. We checked in on Friday. Mason and I had a great night out. We went to eat hamburgers at a campus outdoor restaurant and later ice cream. It was, literally, his last day of freedom. We had a great time. When we got back to the floor he rode the electric four wheeler around the hall. Little did he know that was the last time he'd see out of his tiny room. Poor little guy! The next day he remembered riding the bike and wanted to go out of his room and ride on it again. I tried to explain to him but I know he doesn't really understand.

The chemo he has been taken has been oral. The first 2 times didn't go really well so they decided to put a tube down his nose so they could administer the oral chemo through the tube. The first tube went in but it was clogged so they had to put another one in. That one worked for 1 day but then it clogged up so they had to take it out and put a new one in. That one worked for less than a day and then they replaced it again. What a nightmare that has been. They sedate him each time but the screaming and tears are heart breaking. Mason has gone through sooooo much and he continues to be so cooperative. What a kid!!!!!! His room is sooo small. I brought lots of pictures of his brothers, Christina and Marco, Jim and Joanne and his fish he caught during his last days at home. Next week I'm told he'll have a computer in his room. I brought his favorite CD-roms from home. He"ll need a written routine to follow these next 4 to 6 weeks when he is not allowed to leave his room. Recently I spoke with a family next to Mason's room. They have been in and out of the hospital for 13 months and within those 13 months their son (he's 2 years old) couldn't be outside the hospital so they have been staying at the Ronald McDonald house. I thought our situation was bad but after conversing with this family things don't seem so bad. How do I put this in perspective? Our live has been chaotic but after talking to others it's really not so bad. Thank God for friends and family! One never realizes until something tragic happens how important family and friends are. Recently I have come to know a retired teacher from the Watertown/Mayer district. Her brother went through a similar situation years ago and now she wants to volunteer her talents/teaching to others going through similar situations. What a wonderful person!! The boys are going to attend the Risen Christ catholic school but when we return to our home in Delano she wants to help and in some way. I have enjoyed talking to Mrs. Fazio. Jim and Joannne are with Mason now and will be with him until Friday morning when Zach and I go to the clinic for more blood tests. Zach will be admitted on Monday morning and probably leave that same day depending how he feels. The boys have been at my sister's (Janice and Enrique's) for the last 4 days. They sure had a good time. They have 2 children so it's been good for them to spend time together. What a great family they are! Please keep the prayers coming for Mason. He is confined to his room for 4 to 6 weeks. The room is very small. It is only day 5 but he is feeling good and doing OK with the exception of his feeding tube that doesn't seem to want to work. What a great kid he is!!!!! Send messages to him/us through this website. It sure has kept up our strength!!!!


All our love,
The Jergens

Wednesday, August 08, 2001 at 02:56 PM (CDT)

Just a quick update. We are still at home. Mason picked up a cold so he didn't get admitted on Tuesday like planned. The doctor looked him over and he looked fine but when the doc heard his cough he ordered some other tests - CT scan and x-rays. The x-rays of his chest turned out fine on Tuesday when we were there. They couldn't fit him in for the CT scan on Tuesday so we had to go back there again today for that. That test also turned out OK. So, now he will be admitted for sure on Friday and start his chemo on Saturday which means the transplant will be Monday the 20th now. I am so proud of Mason. He has cooperated so well with all that has gone on. I think he is stronger than I am. Let's hope the first four days of chemo go well with the urinating every 2 hours. My Godsends(Jim and Joanne)will be continuing their caregiving for Mason. They will relieve me on Tuesday and be with him for 3 days or so. They are going to get sick of me saying this but they are sooooo wonderful!Please keep the prayers coming and thank you all for the support and prayers!!!!

Love,
The Jergens

Saturday, August 04, 2001 at 01:15 PM (CDT)

We are all glad this week of tests is over. Mason cooperated extremely well with all the doctors and nurses. After the bone marrow biopsy and lumbar puncture he had on Tuesday we stayed over night at our apartment on Franklin. It's located on the other side of the river 1 mile from the hospital. The place is OK but I can't imagine living there for 3 months with the boys. I know we'll feel confined but it's only temporary. When the boys come home from school here they are used to going outside to play ball, ride their bikes or just play with the dogs. I got names and numbers of catholic schools in the neighborhood and decided on Risen Christ. Hopefully it'll all work out. Turns out the lady I spoke with there lives 2 miles from us here in Delano. She used to be principal at the catholic school in Delano. I'll feel more at ease sending the boys to a catholic school rather than a public school and it'll be a good experience for them. Mason will be admitted on Tuesday at 11 am and start his chemo on Wednesday. The 1st 4 days he takes 1 oral chemo drug every 6 hours. During those 4 days he'll have to urinate every 2 hours - which means he'll be awaken at night to pee too. That particular drug if left in the bladder can be toxic and cause burning and or blood in the urine. The next 4 days it's another chemo drug taken through his IV. He'll then have 1 day of rest then the following day he starts the transplant. Zach will probably be admitted Thursday or Friday the 16th or 17th and shortly after they harvest the marrow (like 2 hours) Mason will receive Zach's marrow through a transfusion. It looks a lot like blood but a brighter red. Mason will be in his room 4 to 6 weeks before being discharged. When discharged he'll stay with us at the apartment for 2 1/2 to 3 months. He'll need to go in to the clinic every day for 3-4 weeks and after that less often. More than likely he'll develop fevers and or infections for which he'll be readmitted until he is beter. Mason is asking to use the computer now so I will sign off and hopefully write again early next week. Stay cool everyone.

Love,
The Jergens

Wednesday, July 25, 2001 at 10:31 AM (CDT)

We're home! What a great feeling to be home together (all of us) again! When we left Children's on Sunday the doctors said we'd have 2 weeks of freedom (no hospitals only visiting the clinic from time to time). Because we were told we'd be home until Aug. 6th we planned to go to Jim and Joanne's, the Dostal's for fresh fish and just being home and enjoying the summer for a short time. However, being on the phone most of the day yesterday with different professionals at the University, I found out Mason needs to be at the U on the 30th to start his "workup" The workup involves many exams: liver, kidney, heart, xrays and physicals. We'll meet with many regarding anything from his protocol(roadmap for the next month) to outpatient care to tutoring. They say the week entails long days and lots of information. Zach will need to come in with us one day for a physical also. So - looks like we'll have to really enjoy this week. Sunday Janice, Christina (my niece), Mason and I went to the Mall of America and the kids went on a bunch of rides. We all had a good time. Monday Janice (my sister) and Christina stayed with Mason while the boys and I went to the Twins game. We met Jim and Joanne and Father Ed (my uncle from Sleepy Eye). We had a great time! Mason has been eating very well now - finally. He is still hooked up to his morphine. Every day he'll be slowly weaned off it. A homecare lady came out yesterday to show me how to work it. She didn't have the order from the doctor so they couldn't start weaning him yesterday and wanted me to learn how to do it. I told them I don't feel comfortable with that so they will come out every day to do it for us. Friday Mason and I are going to Grandma Dorothy's in Hutch where my cousin from California (Diane Binder) will meet us along with Jim and Joanne, Janice, Enrique, Christina, Marco, Joe and Darlene. It'll be a nice reunion of many special people in our life. Sounds like we will be staying at an apartment near the hospital until November. I'll give more details when I know them. Watertown has their Rail to Trail days this weekend. The kids enjoy going there so we'll definitely hit that this weekend. Love to all of you!

Sandy, Kurt, Zach, Adam and of course Mason

Friday, July 20, 2001 at 07:38 AM (CDT)

Since I left Mason on Tuesday afternoon things have been looking up! His blood counts are way up there and he is getting out of his room. Jim has been giving him wagon rides and sounds like they are back on the nintendo - not a bad thing considering for 2 weeks he never asked to play. Two things need to happen though before he can come home for a week or so - he needs to start eating and he needs to be off the morphine. He still has the mouth sores but they are improving. The good blood counts are healing his mouthsores. We were hoping to get him out this weekend but it doesn't look hopeful. Joanne has been getting better nights sleep this week - much different scenario from last week. The boys and I are going to the hospital today. Jim and Joanne have been so wonderful! Mason sure enjoys them. While at home the boys and I had one fun day at the beach. Looks as though the boys will be able to attend school in MPLS for 2-3 months. We are not sure where - there are a few unknowns yet. Since Mason's feeling and looking better expect to see new pictures soon.

Love,
Sandy

Monday, July 16, 2001 at 01:52 PM (CDT)

There isn't any good news to report but I'm told there will be soon. Mason's been dealing with a lot of mouth sores and fevers. The fevers have lessened these last couple days but the mouth sores seem to be multipling. The doctor increased his morphine dosage again today. He has been reacting to an antifungal drug he is given daily. The nurses call the reaction "shake and bake" and that is exactly what patients do. He will tremble, shake and his temp quickly goes up. He had this the first time we were in the hospital but never reacted. It is very difficult to see! With more experimenting with premed's they tell me we should be able to kick it. Thanks to Jim and Joanne I am continuing to go home for 3 days to catch up on things. They have been remarkable! If it wasn't for them I wouldn't be staying strong through this. Kurt and the boys were here for a short time this weekend. Kurt worked all weekend and wasn't even able to go to Holly and Jason's shower on Sunday. The boys and I went and they stayed with Grandma and Grandpa while I returned to the hospital. This last week Mason had a few visitors: Patty and Jennifer (from ECFE), friends Brian and Sharon (from Brownton), Holly and Grandma, Janice, Enrique, Christina and Sister Miriam (from St. Ben's). I have been working with the social workers from both here and the U about housing, etc. I am on a waiting list to stay at a townhouse 2 blocks from the University. The BMT social worker is also looking in to the boys attending school at the Ronald McDonald facility or a near by school. There are a lot of unknowns at this point. Hopefully Mason's blood counts will come up within a week. When his counts go up the sores will go away and we'll go home for a week or so. Then we'll be at the U for more chemo before the transplant. I don't think I mentioned that the last blood test on the boys revealed both haven't had the virus they were testing for so Zach will be the donor. Please continue to pray for Mason. Thanks for the wonderful support from all of you!

Love,
The Jergens

Wednesday, July 11, 2001 at 07:50 AM (CDT)

Things have changed since I last updated the journal. Mason is finally feeling the effects of the chemo. He has been experiencing many fevers and has the mouth sores. Seeing him like this has been very hard. He doesn't want to do anything but watch movies, sleep and read books. Before feeling like this he'd want to go to the playroom immediately upon waking in the morning. He is on a continuous dose of morphine. In fact when he feels he needs an extra bump of the pain medication he can press a button to release that extra dose. I am at home today and will go back on Friday. Jim and Joanne came yesterday to be with him. We spoke last night and things seem to be OK. I am hoping he didn't have a temp last night. Last night Zach had a ball game and hit a home run! He is quite the ball player - we are proud of him. After the game my friend Bonnie and her 2 kids came over. Kurt started a bonfire and we just enjoyed being outside and being together. Today we are heading for the beach for a fun day. We are meeting some friends at the Hennepin Park outside of St. Boni. I have much to do here but the boys need some fun time too. Tomorrow will be the day to hustle and get lots done around here. I don't think I'll be changing the photos on this website for a while - not until Mason starts feeling better. Love to all.

Sandy, Kurt, Zach, Adam and Mason

Friday, July 06, 2001 at 11:02 AM (CDT)

I'm writing this at home. Jim and Joanne came to stay with Mason yesterday so I came home to catch up on things. I didn't realize how much I needed to catch up on until Kurt and I went through the mail, I started doing laundry and cleaning. It's been endless! I don't mind doing those things though - it makes me feel like life is normal for a day or so. Leaving Mason yesterday morning was so hard. Before I left he showed me some sores in his mouth. He was feeling very uncomfortable. This is normal for chemo patients. Most have them throughout their entire treatment. Mason really hasn't had many so we feel fortunate. He didn't want me to leave. I had been there for 6 straight days so I needed to get out of there even though it was hard on me too. The nurses assured me he was going to do fine after I left. I spoke to him this morning and he seems in good spirits although he had a temp last night so they gave him an antibiotic and some morphine for his mouth sore pain. Jim and Joanne have been comforting him by reading and having quiet times together - although some nintendo is still in his daily routine. Mason sure enjoys hearing Jim's stories about the carp down in their valley. He tells me about it often. Holly and Grandma Arline are on their way up to be with him now. Jim and Joanne will return again next week to be with him while I catch up again at home. Zach and Adam are on a field trip to Carver Park and then to Minnetonka beach. I will pick them up and head to the clinic at Children's to have them give more blood. The doctor called me this morning saying that they need to test the boys to see if they have had a certain virus yet. Mason has not had that virus so if one of the two have not then that one will be the donor. If neither have or if both have it doesn't matter who is the donor. Hopefully it'll be Zach. Zach's already accepted being the donor. Kurt's working most of the weekend. Seems like his workload never let's up. We all had a wonderful dinner together last night provided by a dear friend, Marilyn Eggers. We all enjoyed every bite!

Have a good weekend everyone!
Love for all of us,
Sandy, Kurt, Zach, Adam and Mason

Monday, July 02, 2001 at 11:13 AM (CDT)

It's been so long since I've updated everyone. Weekends are when I have the time but the Resource Center isn't open on the weekends. I was home for a couple days getting things done-cleaning, mowing, laundry and of course going to the boys ball games. Jim and Joanne stayed with Mason Wed-Fri. Wednesday after I left is when he started with eyedrops every 2 hours. One of the chemo's can make his eyes dry and burn. Mason cooperates well with the drops and has developed his own routine which ends with crumpling up his tissue and tossing it in to the waste basket. It seemed to be a game Joanne, Jim and Mason enjoyed playing. Jan, Enrique, Marco and Christina arrived on Friday and left Sunday afternoon. Saturday morning they went to the Mall to a special store to purchase juggling stuff for Marco. He's an awesome juggler. I took the boys to Swan Lake in Silver Lake where the Pavlish reunion took place. It was good to see family we haven't seen in a long time. While we were gone Mason enjoyed playing in the playroom with his cousins and later Janice got him down for a nap. We had talked about going to a Twins game, the museum or movie but ended up just hanging out at the hospital and in the play room which seemed OK with everyone. It was just good to all be together. Saturday night Kurt came after a long day of working. They all stayed at Wasie. Sunday Janice and I called up our cousin Randy and popped in on him since he lives only a few miles from Children's. We haven't been to his new place yet. We had a nice visit. His home is in a nice area. Overall, Mason is doing OK. He had his first fever (101) which scared me but he was his jolly self the next morning. Today his ANC is 300 so the chemo is doing it's job - getting his blood counts down. I'm hoping it'll be about a 3 week stay here this time instead of 4 weeks like last time. At least this 4th of July we won't have to be bothered by mosquitos (as godfather Jim said). We will gather in the nurses break room where they say the fireworks aren't too bad. Happy 4th of July!

Love,
Sandy

Tuesday, June 26, 2001 at 01:44 PM (CDT)

Mason has adjusted well returning to the hospital. While walking in to the hospital before he was admitted on Monday he said "now if Toby isn'there I want to go back home" He really missed Toby. The boys (Zach and Adam) are staying at Zach's friends house (Joe Motzko family). Their 7 yr old girl, Anna is also in Adam's class so they all have a good time together especially since they have a pool and it's been so hot these last couple days. The Motzko 's brought Adam to his T-ball game last night and it worked out so well cuz Anna and Adam played against each other. They are a great family. Mason ate good at home but yesterday and today he hasn't had much of an appetite. However, at home when he doesn't eat much during one given day I make peanut butter sandwiches in the shape of a heart. It worked. He ate 3 of them. I'll have to remember to bring back my special cookie cutters. Whatever gets him to eat! Any other sugguestions please let us know. Jim and Joanne are coming tomorrow to stay with Mason until Friday morning. Works great that way the boys make it to their ball games - Kurt never knows when he's off work so I usually take them and Kurt meets us there later. We still aren't quite sure when we'll be home next. Each doctor tells us something different which lately has been frustrating however we still know this is the best place to be. It's been wonderful getting to know nurses and doctors here. What a group of great professionals! Our new phone number is 612-813-6780.

Love to all,
Sandy, Kurt, Zach, Adam and Mason

Saturday, June 23, 2001 at 06:46 PM (CDT)

Being home with Mason has been wonderful but you can sure tell he's been catered to @ the hospital. So many times Zach and Adam have said "Mason always gets his way". And he does. We can't help but spoil him. Monday we go back to Children's. We don't know what the treatments gonna all entail cuz we've been told 2 different things. We know for sure that he'll have 5 days of chemo. Being home for over a week we've run in to so many caring people. Watertown is such a great community. Being in ECFE has been the best thing for all of us. The families we've met are so wonderful! The boys and I don't see much of Kurt due to his busy work schedule. Hopefully tomorrow we'll be able to spend time together before Mason goes back to the hospital. Zach and Adam have enjoyed Kids Co. this last week which included a trip to the Old Log Theater to see Peter Pan. Today they spent a few hours at the high school pool. Mason and I visited Grandma Dorothy, Great Grandma Rose, Great Aunt Diane, Grandma Arline, Angie and Holly on Friday. Mason doesn't mind going back to Children's Monday. I think he's missed a few people there especially his buddy Toby and of course "Nintendo". Mason's primary doctor called last Thursday telling us he's on leave until the first part of August. He has adopted 3 children. They are all siblings. We are so excited for him. He is a wonderful person and will be a great dad!

Love to all,
Sandy, Kurt, Zach, Adam and Mason

Wednesday, June 20, 2001 at 07:42 AM (CDT)

It has been a great few days at home with Mason. We have had a lot of company which has been great for Mason. Some of Mason's friends have come to see him. Sunday mom, Janice, Enrique, Marco and Christina came and brought fresh fish from their recent trip to the lake. That was a treat! Sunday Zach complained about a sore throat so I brought him to ER - strept throat. I drove him right to grandma's and grandpa's He stayed there until yesterday. Adam has been at Kid's Company (day program at school) and having a great time playing with his friends. Zach and Adam will be going there during the day the rest of the week. Yesterday Mason and I went to the U for a visit of the transplant dept. Everything was so overwhelming. I walked out of there with so much informaation. Since Mason has been home his hickman (tube in his chest for medicine and drawing out blood) has pulled out about an inch. They took an xray to make sure it was still positioned OK. The doc there suggested he have it replaced so today we are going back to Children's for that and a bone marrow test to see if he is in remission. Mason and I were going to go to Grandma Dorothy's, Grandma Rose and the Dostal's today but now will have to tray and make it another day. While at the U yesterday the social worker explained to us that during the 100 days from the transplant Mason needs to be no more than 30 minutes away from the hospital. Which means we may have to stay at an apartment for a couple months. I asked if they could make an exception due to the fact that we live only 45 min. away. At the time of Mason's diagnoses I wondereed how everything was going to work out - things at home and with Mason. They have somehow. We owe it to family and friends for all their help and support. Oh, and of course all the prayers I know are helping. Mason is feeling so good!

love,
The Jergens

Wednesday, June 20, 2001 at 06:32 AM (CDT)

Well, let's see how far I can get before one of the boys wakes up. It has been a great few days at home with Mason. We have had a lot of company which has been great for Mason. Some of Mason's friends have come to see him. Sunday mom, Janice, Enrique, Marco and Christina came and brought fresh fish from their recent trip to the lake. That was a treat! Sunday night Zach complained of a sore throat so I brought him to the ER - strept throat. I drove him right to grandma and grandpa's. He stayed there until yesterday. Adam has been at Kids Company (day program at the school) and having a great time with his friends there. Zach and Adam will be there during the days the rest of the week. Yesterday Mason and I went to the U for a visit of the transplant department. Everything was so overwhelming. I walk out of there with so much information. Since Mason has been home his hickman (tube in his chest for medicine and drawing out blood) has pulled out about an inch. They took an xray to make sure it was still positioned OK. The doc there suggested he have it replaced so today we are going back to Children's for that and a bone marrow test to see if he is in remission. Mason and I were going to go visiting Grandma Rose, Grandma Dorothy and the Dostal's today but now will have to try and make it another day. While at the U yesterday the social worker explained to us that during the 100 days from the transplant Mason needs to be no more than 30 minutes away from the hospital which means we may have to stay at an apartment for a couple months. I asked if they could make an exception due to the fact that we live 45 minutes away. At the time of Mason's diagnoses I wondered how everything was going to work out - things at home and with Mason. They have somehow. We owe it all to family and friends for all their help and support. Oh, and of course all the prayers I know are helping. Mason is feeling so good!

Love,
The Jergens

Wednesday, June 20, 2001 at 06:06 AM (CDT)

Well, let's see if I can finish this before one of the boys wakes up. It's been an overwhelming few days home. We've had company pretty much every day which has been great. Mason is enjoying seeing everyone. Sunday mom, Janice, Enrique, Marco and Christina brought over fresh fish caught on their recent trip to the lake. That was a treat! Sunday night Zach came down with a sore throat so I brought him in to ER - strept throat. That night I brought him right to Grandma and Grandpa's in Biscay. He stayed there until yesterday. Adam was at Kids Company (day program for Watertown kids at the school) these last 2 days. Zach and Adam will be there through Friday this week. Adam has been having a great time playing with friends from school. Yesterday Mason and I visited the hospital at Fairview University. So much information was given to us about the transplant. After he is done with another 4-5 weeks at children's he will be going in for more chemo at the U. They wipe him out with the chemo before he gets the transplant. He will be at the U 4 to 8 weeks. One disturbing piece of information they gave me was that for 100 days he needs to reside no more than 30 minutes away from the hospital. This would mean that he and I may have to find an apartment near the hospital for those days. The social worker said she will double check on that rule and they may alter it due to us living only 15 minutes more away. At the time of Mason's diagnoses I wondered how we were going to get through all these weeks with juggling things at home and at the hospital but they do work out - some how they work out just fine. We owe it to so many family and friends. Since Mason has been home his hickman (tube used to give Mason his medicine and take blood from him) has pulled out of his chest about an inch. Yesterday the U took Xrays to make sure it is OK. The doctor there suggested he have it replaced so Dr. Steve called yesterday to arrange the surgery for today. He will also have a bone marrow test to see if he is in remission. We will have another weekend at home and head back to Children's on Monday morning to begin his next chemo treatment - 4 to 5 more weeks back in the hospital. Mason sure has enjoyed being home and we sure have enjoyed having him home with us. He is doing so well - keep the prayers coming.

Love,
The Jergens

Friday, June 15, 2001 at 04:40 PM (CDT)

I'm writing this journal entry from home-Mason is finally home after 4 weeks and 2 days of being in the hospital. He has had this attitude lately and I finally figured out what it was all about. He has been inside all those days and hasn't been outside at all. I'd have an attitude too. I came home yesterday to disinfect the house. Holly, Jason and Angie stayed overnight with him last night which was great so I could clean the house. Everyone pitched in and we cleaned like crazy! When we got home Mason wanted to go in his treehouse, ride his electric four wheeler and just sit on the patio and play with Kovu (his puppy). A lady is coming down from St. Cloud with medical supplies for him. I have to change the dressing on his hickman, and flush it with heparin every 24 hours. The nurses spent quite a bit of time with me learning to do those things. He will probably be home about 7 or 8 days then back in for 5 more weeks. Tuesday we are going to the University to meet with the transplant doctor. It is so great to have him home with us!!

Love to all,
Sandy, Kurt, Zach, Adam and Mason

Wednesday, June 13, 2001 at 09:34 AM (CDT)

It's been hard to find time to come down here to the resource center to update the website. Good news this morning - Mason has nuetrophils!!! This means that he may be going home sooner than they thought. He got a platelet transfusion yesterday. All the transfusions he is getting is making his blood counts go up. Last night it took 1 1/2 hours to get his oral medicine down. There were 4 nurses besides myself working on it. It better start getting easier because he'll need to take it at home too. Kurt got rained out today so he took the boys to Ginger's day camp. The boys and I went home yesterday to find that the hail storm destroyed 3 windows, shutters, the pickup windshield and my garden doesn't look too good. Oh well, could of been worse. My good friend Bonnie cut the grass again for us and has been checking up on the place while we are away. Hope to have more good news tomorrow about his blood counts. Thanks everyone for the overwhelming support! I want to thank everyone for all the great jokes. Mason sure has enjoyed them. Keep sending them Matt!

Love to all,
Sandy

Saturday, June 09, 2001 at 01:54 PM (CDT)

Sure was good to be home for a couple days but things didn't seem right without Mason in the house with us. We could feel the emptiness. Jim and Joanne did great with Mason. He really enjoyed them being with him. They are busy people even though retired. Joanne has almost completed her 2nd book which Jim helped her write. They both are busy volunteering their time, enjoying their beautiful valley outside their home plus many other things. Last year the boys and I spent time down in their valley picking berries. It would be great to go there again during berrie season. Mason talks about last year's berry picking often. Today is day 23. Between day 35 and 42 he should be released for a few days. he still doesn't ask to leave the hospital and go home but I know it'll do him good emotionally to sleep in his own bed, play with his dogs, toys and computer. We sure are looking forward to that glorious day! Mark, Angie (aunt and uncle) and Holly (cousin) came yesterday. They played the "Guess Who" game and had a great time. Angie and Holly may stay overnight with Mason next week one night. Overall, things are going well - no fevers, mouth sores and he seems to have lots of energy to play with his brothers, uncle Jimmy and Toby (NA). Have a good weekend everyone!

Love,
Sandy

Thursday, June 07, 2001 at 12:22 PM (CDT)

I haven't updated the journal for quite a while but have been wanting to. The boys and I are home right now. Yesterday we went to Rebecca Park and went rollerblading. It was hard keeping up to the boys but we had a blast. I think we all needed to spend that time together having fun. Zach, Adam and I all stayed overnight with Mason on Tuesday night (the boys last day of school). We left in the morning for apptmts back home. Since then, Jim and Joanne have been with Mason. He sure enjoys them - I think Jim will have to buy a nintendo machine. He and Mason spend a lot of time playing nintendo together. Last night Adam had t-ball so we ran in to a lot of concerned friends offering their support, help and prayers. Since we have been home Patty Reinert and Chris Buttenhoff have brought the most wonderful food over. Another dear friend, Ginger Dixon, who has an animal farm outside of Watertown and holds many kids camps in the summer has offered to have the 2 boys attend her camp next week. They will love that! I know I say this everytime but it is so great to have all you family and friends helping us through this. Kurt has been working many long days but has continued to keep the house up pretty well. We hope to get to Aaron Jergens graduation party on Sunday but don't know for sure Mason sure looks up to his big cousin Aaron. Zach has a baseball game tonight so we'll go to that then in the morning head back to Children's. Thanks for all your prayers!

Love,
Sandy, Kurt, Zach, Adam and Mason

Monday, June 04, 2001 at 12:55 PM (CDT)

It was a quiet weekend. Kurt had the boys at home most of the weekend but they stayed overnight at Wasie (hotel connected to Abbott). Mason seems to be more tired lately and the nights are less restful. We are waiting for his blood counts to come up and then in a couple weeks hopefully we'll go home for a few days. We look forward to that day!! Two of Mason's teachers from ECFE came to visit this morning Patty and Jennifer. He talked about their visit all weekend. We will sure miss Jennifer next year for she will not be teaching at W/M. She is full of energy and has such great ideas. Jim and Joanne will be coming here on Wednesday and staying until Friday. Mason really enjoys having them here when I am gone.

Love to all,
Sandy

Saturday, June 02, 2001 at 10:45 AM (CDT)

Being home for 2 days felt really good- gave me some energy. Thursday night my dear friend Cheyenne brought over quite the meal. It was so wonderful! She went through similar hard times not long ago with the death of her son. It has helped to talk to her these past couple weeks. Joanne and Jim did a great job taking care of Mason while I was away. Joanne solved the problem of taking the oral meds. It's much easier now. They were with him when he was put to sleep for the bone marrow test. Jim and Mason sure had a good time playing games. We feel so blessed to have them as family. Dr. Steve came in last night to tell us things are going the way he hoped. He has 2.8% leukemia yet - down from 82% Now it's a matter of waiting for his blood counts to go up. His hair is coming out in chunks. The nurse said that's actually good because it's telling us that the chemo has worked and is killing the cells in his body. Dr. Steve thinks he may be able to go home in a couple weeks for a few days. The transplant won't take place until probably the end of July. He needs to go through 2 more rounds of chemo before the transplant. We have 2 graduations to go to today but won't make it. Congratulations Amber Dostal and Brett Fink. We are thinking of you and wish we could celebrate with you today. We want to thank all the students and staff at Watertown/Mayer Elementary for all their cards, presents and support.

Take Care,
Sandy, Kurt, Zach, Adam and Mason

Thursday, May 31, 2001 at 01:23 PM (CDT)

I don't have much time to write. I need to get to school to get the boys and bring em to their vision therapy in Plymouth and then take Zach to his baseball practice. I just wanted to give all of you the good news! Mason did get the best birthday present of all - both his brothers match his bone marrow! Jim and Joanne are with him today so I can spend time with Zach and Adam. They have been so wonderful! We have been blessed with great support by family and friends. Last night we celebrated Mason's 4th birthday. The staff sang to him, brought him gifts (too many). Watertown/Mayer Elementary showered him with gifts too - thank you to everyone! I have been trimming around trees, working in the garden and hanging out wash today. It feels good to do some physical work. Kurt has been great with keeping up the house and taking great care of the boys plus working long hours. I have new pictures to put on the website but am having trouble with it. I believe everyone's prayers have given us all strength and hope - so keep praying. The good news has also given Kurt and me much needed energy. Take Care everyone!

Sandy

Wednesday, May 30, 2001 at 09:57 AM (CDT)

Today is Mason's 4th birthday. We are having a small party for him. He's telling all the nurses and volunteers about the cake his godmother Joanne is making him - it's gonna have worms on it "but not real worms - gummie worms". Dr. Steve brought him a Pokemon balloon. The weekend went OK. We were looking forward to Janice and her family to visit a couple days but due to a cold we decided it's best they stay put. Sr. Miriam came Sunday - it was great to visit with her. Sunday started the 2nd round of chemo. Today is his last day of the 2nd round. He hasn't had any side effects at all! The doctors are amazed. Today Jim and Joanne are coming from Mankato to be with Mason for a couple days. They are bringing his cake and sandwiches for the party. They offered to stay with him while I go home for a while. Zach has baseball practice tomorrow I'd like to go to. Kurt has been taking him and helping the coach. I've been with Mason everynight here so I don't expect to sleep any better at home thinking about him all the time but it will be a much needed get-away and knowing he is with Jim and Jo ( in great company) means a lot. Mason's been learning how to play nintendo (it's a treat for him cuz we don't have it @ home). He played with Toby (NA) for over an hour yesterday. I went home yesterday to clean, do laundry and get the boys to school. My friend Bonnie cut the grass over the weekedn - looks great! Thanks Bonnie! Mason received cards from the whole 4th grade. We had a good time looking at each one and we put them up on his walls. Mrs. Wingert's class (Adam's class) made cards too so we'll have to put them up when Adam brings them home today. We are hoping to get the bone marrow test(HLA) back today or tomorrow. Sure would be a great birthday present for Mason to know that one of us is a match.

God Bless,
Sandy

Wednesday, May 30, 2001 at 09:57 AM (CDT)

Today is Mason's 4th birthday. We are having a small party for him. He's telling all the nurses and volunteers about hte cake his godmother Joanne is making him - it's gonna have worms on it "but not real worms - gummie worms". Dr. Steve brought him a Pokemon balloon. The weekend went OK. We were looking forward to Janice and her family to visit a couple days but due to a cold we decided it's best they stay put. Sr. Miriam came Sunday - it was great to visit with her. Sunday started the 2nd round of chemo. Today is his last day of the 2nd round. He hasn't had any side effects at all! The doctors are amazed. Today Jim and Joanne are coming from Mankato to be with Mason for a couple days. They are bringing his cake and sandwiches for the party. They offered to stay with him while I go home for a while. Zach has baseball practice tomorrow I'd like to go to. Kurt has been taking him and helping the coach. I've been with Mason everynight here so I don't expect to sleep any better at home thinking about him all the time but it will be a much needed get-away and knowing he is with Jim and Jo ( in great company) means a lot. Mason's been learning how to play nintendo very well (it's a treat for him cuz we don't have it @ home). He played with Toby (NA) for over an hour yesterday. I went home yesterday to clean, do laundry and get the boys to school. My friend Bonnie cut the grass over the weekedn - looks great! Thanks Bonnie! Mason received cards from the whole 4th grade. We had a good time looking at each one and we put them up on his walls. Mrs. Wingert's class (Adam's class) made cards too so we'll have to put them up too. We are hoping to get the bone marrow test back today or tomorrow. Sure would be a great birthday present for Mason to know that one of us is a match.

God Bless,
Sandy

Saturday, May 26, 2001 at 10:11 AM (CDT)

It's been a good couple days. Mason is still feeling good. Tomorrow he starts his 2nd round of chemo. Talking with other parents here they say that the 2nd time around seems to be harder for the kids - change in appetite, sleepier, nausea. Mason hasn't had any of that. He loves to take bathes - 3/day usually. A couple of days ago Aaron, Holly, (cousins) and Angie (aunt) came by. He sure looks up to Aaron - his big cousin and talks about him often. Kurt and the boys are coming today and staying until Monday. Janice (my sister) and her family will be coming Sunday until Monday. One of Mason's blood counts is getting low and he is scheduled for a transfusion tomorrow unless the count goes up. They say it takes 3 hours and he can go about his normal routine. It is common to have tranfusions throughout his treatment. I'm sure you have all heard about the nurse's strike that will begin June 1st unless they settle. Even though doctors are reassuring us that Mason will still be in the best care - it scares the hell out of us! Have a good weekend everyone despite the weather.

Love,
Sandy

Thursday, May 24, 2001 at 03:47 PM (CDT)

I finally got some time to come down here and give an update on Mason. He is doing so well. I am so proud of how well he is adjusting to this new routine. He is eating well, drinking well and playing hard- playing too hard at times. Yesterday we had a few visitors: Grandma and Grandpa came and played basketball in the playroom with him. He really enjoyed seeing them. They have helped so much with things at home - it's greatly appreciated. My dear friend Dixie stopped after work too. They (herself, Jeff -her husband and their two boys Tony and Jimmy) showered Mason with practical toys to play with in his room. She also brought guardian angels for all of us. Mine is on a silver chain. I will wear it always and right now I have Mason's on my chain also because he and I are always together. Randy and Denise (cousins) stopped by also. Randy came last weekend too. It's a great feeling to have family like them who give support to all of us. The boys and Kurt came down last night and stayed over. This morning the nurse took all of our blood to send in to see if any of us are a match to Mason. Adam had a really hard time with it. After kicking, screaming and crying we finally were done and he was just fine. The boys have been with Mason and me all day today. I think Zach and Adam needed this day together - I know I did. I have missed them. Thanks everyone for your support, messages and calls.

Love,
Sandy

Tuesday, May 22, 2001 at 11:07 AM (CDT)

It's been a good morning so far. Mason and I slept well last night. He finished his last day of chemo (first round) last night. He is still in good spirits and not asking to go home. There is a volunteer with him right now reading. Fr. Ed (uncle), Jim and Joanne (Godparents) came yesterday - what a big support they have been. Fr. Ed gave us all the sacrament of the sick. Mason had 2 tests yesterday - MRI and spinal tap. He couldn't eat all day until after his tests which was really difficult for him. He wanted "mashed potatoes and macaroni and cheese". The 2 tests came out well. There was no sign of luekemia on his spine or head. The boys will be coming in on Thursday for blood tests to see if they are a match to his bone marrow. Kurt appeared pretty down this morning when I talked to him. It's hard being apart during this difficult time. Family and friends are a great support. Thank you everyone for your calls, cards, e-mails and just being there to talk to. I hope to get some pictures on this website of Mason soon. God bless all of you and keep praying.

Sandy

Saturday, May 19, 2001 at 03:21 PM (CDT)

Today is day 4 of our long stay here at Children's. Mason has been very cooperative with nurses and doctors. He knows he is sick but I don't think he truely knows how sick. Please keep him in your prayers daily as he continues this tough journey to good health. Thanks to all you for your support and prayers. Your messages/notes to Mason and us are greatly needed so please use the guest book and leave notes.


love,
Kurt, Sandy, Zach, Adam and Mason

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