Journal History

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Wednesday, September 13, 2006 10:15 PM CDT

I can't believe how quickly time passes...I just realized
that my last journal entry was in April!! I'm so sorry
to be posting so infrequently. It means so much to us
that some of you still pop in on this page to see how
we are doing and to remember our darling Jake.

Where to begin??? We are all doing well. Jerry is busy
on the farm (as always), I became a stay at home mom
effective July 12th and I am loving every moment spent
with Josie. Alex is now 21 and is attending the local
Technical College studying Marketing. He has also been
helping Jerry on the farm for the past two years. He says
he doesn't enjoy the work, but LOVES spending time with his
dad. I know how very much Jerry LOVES having Alex work
along side him. Ben began his senior year of high school
and has been working for the past two years in the restaurant business. He loves the work and is very good
with the patrons.

Now to Miss Josie....she has been VERY busy. Let's see,
since my last entry, she has begun walking, jabbering more
and more words everyday. She eats with utensils and sits
at the "grown up" table for meals. She loves to help us
with any chores we might have...she is great at getting her
bath toys out for bath time, brushing her own teeth, helping me wipe the floor and sweeping.

She is the joy of our lives and she fills our days with
laughter and hope. I feel so blessed to be the mother of
two beautiful, amazing children. Jake is never far from
my thoughts and as I watch Josie blossom and grow, I am
brought back to the fond memories of Jake's early childhood. Although Jake and Josie do not look alike, they
have the same sparkle in their eyes!! Josie has an infectious personality just as Jake did. We often think
about how much fun it would have been to watch the two of
them grow up together.

We are certain that Jake is watching over his little sister
and he will always be there for her when she needs him.
I have udpated the photos, so you can see how much she has
grown.

Thank you all again for keeping Jake's spirit and memory
alive in your thoughts and in your hearts.
Love to all,
Natalie, Jerry, Alex, Ben, Jake and Josie

Sunday, April 23, 2006 3:04 PM CDT

Hi everyone,

As usual, it has been too long since my last entry. All is
well here. We had a busy month of April. We celebrated
Josie's first birthday on March 31st with her official
party on April 8th. She had alot of fun devouring her
cake and "not" opening her presents. She had more fun
with the wrapping paper and boxes. Josie enjoyed her
first Easter, not quite sure what to make of her Easter
basket.
We celebrated Jake's 9th birthday on April 15th in our
customary way. We made a chocolate cake with chocolate
frosting (baseball theme decorations) chocolate custard
and of course a small fireworks display in his honor. It
is so hard to believe that he would have been 9 years old.
We can only imagine the amazing young boy he would have
become. I sometimes see a few of his pre-school buddies and barely recognize them. They have all grown so much. Jake
remains 5 yrs old in our minds. I have to say that we miss
him as much if not more as the day he left us for his new
home in Heaven. We show Josie pictures of her big brother
and have begun to tell her stories about him. She will grow to know him as we did. I'm sure that he is constantly
watching over his little sister.

Thank you all for continuing to check in to this site. We
are forever touched by the lasting impression our precious
son has made on your lives.
Love to all. Natalie, Jerry , Alex, Ben & Josie

Sunday, November 27, 2005 3:30 PM CST

Hi all,

Once again it has been too long since my last entry. We are
all doing fine. Jerry is just finishing up with crops for
the year, but continues to be busy on the farm. Josie will
be 8 months old this week and she is growing so fast. She
now has 4 teeth and has been eating solid foods for a couple of months. There isn't any baby food that she doesn't like.

She is such a happy and content little girl. We count our
blessings every day. We are certain that she is Jake's gift
to us and we are enjoying every moment we spend with her.

We are fast approaching Jake's Heavenly Birthday. December
1st will mark 3 years since Jake left us. We continue to
miss him everyday. I think that it is becoming more difficult as time goes on. I am sure that the initial shock has worn off and with each passing day we realize that we will have to wait until we are re-united with our
precious boy. Unfortunately, Neuroblastoma has taken the
lives of other precious children over the past three years
and our hearts and prayers go out to those families.

I wanted to let you all know about the annual Worldwide
Candle Lighting that will take place on Sunday December 11th. People around the globe are invited to light a candle at 7 p.m. in their time zone, creating a virtual 24
hour of remembrance for all children who have died. Please let
your friends and families know so that they too can
participate.

We wish all of you and your families the happiest of holidays and a healthy New Year. We have updated the photos of Josie...enjoy.
Love, Natalie, Jerry, Jake and Josie

Sunday, July 17, 2005 4:38 PM CDT

Hi everyone,

Just a quick note to let you know that I have FINALLY updated Josie's pictures on the website. She is doing
great!! She will be 4 months old at the end of the month
and growing and changing everyday. She rolls over, laughs,
smiles and coos and babbles. She brings us so much joy
and happiness, just like her big brother Jake. We see
so much of him in her. They have the same smile.

Love to all,
Natalie, Jerry, Alex, Ben, Jake and Josie

Monday, June 13, 2005 8:04 AM CDT

Hi everyone,

I know it has been awhile since I updated the website so
I thought I would let you all know how Josie is doing.
She is now 11 weeks old and doing just great. She is a
happy, healthy, beautiful baby. She has her big brother
Jake's smile and she brings us as much joy as he did.
We count our blessings everyday and thank God for this
wonderful gift. Josie reminds us of what a miracle life
is and how precious every moment with our children is.
We miss Jake terribly and think about what a great big
brother he would be to Josie.
Jerry has been busy working on the farm. It has been
a very warm June in Wisconsin and the crops are growing
quickly. I returned to work on May 16th and am adjusting
to my new schedule (not sleeping in every morning) and
being away from Josie. She is being very well cared for
by Gramma Clarie two days a week and our dear friend
Peggy the other two days. I miss being with her everyday.
I will be updating Josie's pictures in the next day or two
so be sure and take a look.
Have a great summer.
Love, Jerry, Natalie, Jake and Josie

Monday, April 11, 2005 12:21 AM CDT

Hello all,

We want to introduce you to the newest member of our family. Josephine (Josie) Michele Peters arrived on
Thursday March 31,2005 at 8:09 am. She weighed in at
8lbs 4oz and 20 1/2" long. Baby and Mom are doing fine.
We arrived home last Monday and we are all settling in
just fine.

We could not feel more blessed that God has given us yet
another beautiful child to love. Josie looks so much like
her big brother Jake. We know that he is smiling down upon
us and will be a great guardian angel to his little sister.

Please check the photos, we have added a couple of Josie.

Love, Jerry, Natalie, Alex, Ben, Jake and Josie

Friday, March 18, 2005 12:40 AM CST

Hello to all,

Just wanted to quickly update everyone on the pregnancy
front. We are still on track to deliver the baby via
c-section on March 31st. Everything continues to run
smoothly with the pregnancy. I hope to continue working
until the 29th.

We are also awaiting spring in Wisconsin, but as I write
this, the snow is falling and we are expecting 8-10"
this afternoon and tonight. But the calendar says that
spring begins on Sunday!!

We hope all of you are well and we thank you for continuing
to check in on the website.

Natalie, Jerry, our angel Jake and baby Peters

Sunday, February 20, 2005 4:50 PM CST

Oh my how time flies....

I am so sorry that I have let my entries lapsed in this
journal. Thank you to all of you who continue to log on
and check in on us.

There is so much to catch up on. We managed to "survive"
Jacob's 2nd Heavenly birthday. We continued the tradition
of my attending mass in the morning, placing flowers on
his grave and then gathering with friends and family at
Hooter's for a "birthday party" for Jake. This year 23 people attended and we once again shared memories and many
laughs of Jake's short, but full life. We released Hooters
balloons in the parking lot into a brightly starlit December sky. It means so much to us to have so many people join us in remembering the life of times of our
precious Jacob.

The holidays were bearable. We were surrounded by loving
friends and family who do their best to help us cope, but
we will always long for and miss the Christmases that "might have been." But we continue to carry Jake in
our daily thoughts and in our hearts...no amount of time
or distance will ever take that away from us.

For those of you who may not know, we have some joyful news
to share. Jerry and I are expecting a baby at the end
of March. We searched our hearts and souls and knew that
we needed to once again fill our home with the love and
laughter of a child. We know that Jacob is watching over
all of us with a smile. He would want us to open our home
and hearts again to a child whom we can love. Everything
is fine with the pregnancy and thanks to the 57 and 63
year old women in the news lately giving birth, I won't be
the oldest woman on record.

I apologize again for my lapse in journalling. I hope to be able to update you again soon. We will definitely
post pictures of Jake's little brother or sister.

As always, our love and gratitude to all of you.
Natalie, Jerry, Jake and baby Peters

Sunday, September 12, 2004 7:58 PM CDT

Hi dear friends and family,

I know it has been a very long time since my last journal
entry, so I decided to put new pictures on the website
and update the journal.

We had a busy summer. Alex graduated from Bay Port High
School and began attending UW Milwaukee this past week.
Ben got his turned 16 in June and got his driver's
license and a car. They have both grown up so quickly.
Ben is a Sophmore at Bay Port this year.

Jerry stayed very busy on the farm, once the rainy months
of June and July passed. They are building a shop and office at the farm up north, so that will keep him busy
this winter. My brother Tony has spent quite a few weekends this summer helping on the farm. He enjoys the
work and we love having him around to help.

I stayed busy with my job at the clinic amd my postion on
the board of the Families of Children with Cancer. My
sister Mary Jo came to live with us in May from Wisconsin
Rapids. It has been great having family here. She is
looking for employment here and plans on settling in Green
Bay.

Jerry and I attended the wedding of a close family friend
in August in Estes Park Colorado. We drove out and spent
a couple of days there and drove home. What a beautiful
place. The wedding of Stephanie and James was lovely and
we wish them a very happy life together.

We continue to miss Jake deeply each day. We long for the
joy and laughter that once filled our home. We do find peace in the knowledge that he is with us ALWAYS and that
he is at peace.

Thanks to all of you for continuing to check the website
and for your thoughts and prayers. Jake certainly made sure that we were left in good hands.

Love to all,
Jerry and Natalie

Friday, April 16, 2004 8:05 PM CDT

Dear friends and family,

I know it has been a very, very long time since I last
updated Jake's website and I feel terrible. I would like
to say that I've been so busy, but that just isn't true.
I guess there hasn't been too much to tell you.
Jerry and I survived the winter. We did not travel this
winter except for a few days during Christmas when we went
to Lake Geneva. Otherwise we tried to stay busy with work
and home projects. I re-decorated our main bathroom,
kept busy with scrapbooking and tried a Pilates class.
The farm still managed to keep Jerry busy this winter. He
attended a few auctions, the National Farm Machinery Show
in Louisville and learned more about the world of marketing
crops.
We did our best to survive the holidays, although at times it was very difficult. To say that we "miss" Jake
is the understatement of the year! We long for his laughter, his smile and his warm and loving arms around us.
The sharp pain of our loss has dulled a little during the
past year, but the gaping hole remains in our hearts and the emptiness in our home. Each day we strive to honor
Jake's life and the impact that he had on so many people.
We are trying to find peace and a little joy in each day
as we know Jake would want for us.
We are grateful for our wonderful memories of Jake and
how much he made us laugh and how much he taught us about
LOVE.
We celebrated Jake's 7th birthday yesterday. I attended
morning mass and placed balloons at his grave. We gathered
in the evening for his favorite.. chocolate cake with
chocolate frosting and chocolate custard ice cream. We
lit a few fireworks in the driveway that we are sure
Jake enjoyed. We know that he was celebrating right along
with us.

As always, thank you to the countless friends and to our
loving families who continue to support and care for us.
We love all of you.
Natalie and Jerry

Sunday, December 7, 2003 7:48 PM CST

Hello family and friends,

We would like to remind you that the National Children's Memorial Day will be held on Sunday
December 14th.
Once again, people around the globe are invited to light a candle on Sunday, December 14th
at 7:00 pm in their time zone. As candles burn down in one time zone, they will be lit in the next,
thus creating a virtual 24-hour remembrance of all children who have died.
Please let your family and friends around the world know so that they can participate as well.

We will be attending our local event for the Green Bay Chapter of The Compassionate Friends
at First United Methodist Church, 501 Howe Street at 7pm on December 14. All are welcome.

This event is sponsored by The Compassionate Friends, a worldwide organization offering support
and friendship to bereaved families who have experienced the death of a child.
For further info about the Worldwide Candle Lighting visit the website at
www.compassionatefriends.org.

Love, Natalie and Jerry

Tuesday, December 2, 2003 6:53 PM CST

Hi everyone,

We want to thank you all for the countless cards, phone
calls, emails, flowers and gifts that we received on
Jacob's first Heavenly Birthday. We are deeply touched
by your love and concern for our family. We are doing
fine and we had a good day yesterday. We realized that
a specific "date" on the calendar does not mean that we
mourn any more or less for Jacob than we do any other day.
We tried to find a way to "celebrate" the day as we thought
Jake would want us to.

Jerry and I went to the cemetary in the morning and placed
4 red roses on his grave (one for each of us and Alex and
Ben) and they we went into church and lit a candle. Jerry
and I then went to Jake's favorite restaurant, Barley's
Diner for breakfast. Jake loved to go there for breakfast
with anyone who would take him.

Jerry had some farm work to do in the afternoon, so I was
off for some shopping a little bit of pampering. I had
a wonderful massage!! A few dear friends told us that they
were going to HOOTERS to celebrate Jake's new life in
Heaven and his true spirit. Jerry and I agreed that it
would be just what Jake would have wanted. We invited
family and friends to join us and we enjoyed an evening
of memories, laughs and most of all great love for Jacob.

As many of you will remember, Hooters was high on the list
of Jake's favorite places. What other child do you know
would leave the hospital after a three week stay and choose
to go to Hooters for his few hour furlow? That place will
always hold fond memories for us. We feasted on hot wings
and birthday cake and capped the evening off by releasing
Hooters balloons into the clear night sky. Thank you
to all who shared the evening with us and thank you for
recognizing and celebrating Jake's vibrant and carefree
spirit.

Thank you again for sharing in Jacob's life here on earth
and for keeping in close in your hearts, minds and prayers.
God bless you,
Natalie, Jerry, Alex, Ben and our angel Jake

Monday, November 17, 2003 9:23 PM CST

Hi everyone,

I am so sorry that so much time has passed since my last
journal entry. Jerry and I are doing fine...not great, just fine. It has been a difficult month of looking back
and remembering how sick Jacob was this time last year.
But those memories are also filled with Jake's smiles and
his love. Although he wasn't himself those last several
weeks, we never had to wonder how much he loved us.

Jacob's strength, courage and love continue to helps us
through our difficult moments. Nothing will ever fill the
void in our lives and hearts that Jacob's passing has left,
but we try to find tiny moments of joy and happiness.

Jerry has been busy farming. He should be finished with
all of his crops by next week. He has been working day
and night for the past two months. I am working about
36 hours a week at the Chiropractic clinic and I really
welcome the distraction the job offers me. I enjoy working
with the patients and my co-workers.

I have updated the photos on the website. I have included
a photo of Jake's monument for those of you who will never
have the opportunity to visit his grave. It is only fitting that Jacob's grave is in front of a beautiful corn
field that "coincidentally" his father planted and harvested. Jacob's monument has a tee ball photo of him
etched on it along with a monarch butterfly and our
John Deere combine that Jacob loved to ride in.

I also included the photo of me crossing the finish line
at the Rainbow Classic in July. What a rewarding moment
for me! The last photo is one you may have seen before.
It was taken as Jake's 5 year picture in Sept. 2002. We have had a request to keep a picture of Jacob on the website for those of you who draw inspiration from his
smile. We hope you enjoy them!!

We wish you and your families a blessed Thanksgiving. Our
thoughts will not be far from our last Thanksgiving spent
with Jake. As sick as he was, he told us three things that
he was "thankful" for and then asked the rest of the family
to do the same. We hope that this Thanksgiving when you
gather as a family, you too will find many blessings in your lives to be thankful for.

God Bless you all,
Natalie and Jerry

Wednesday, September 17, 2003 7:48 PM CDT

Hello everyone,

I am sorry that I have not been updating the site lately.
I guess there hasn't been much to write about. Jerry and
I are doing fine. Work has become a safe haven for us both.

We continue each day to try to adjust to our "new" life,
but it hasn't been easy. Jacob WAS our LIFE and we miss
him more with each passing day.

Alex and Ben are back in school. Alex is a high school
senior and Ben is a freshman. I found it difficult facing
the first day of school thinking about Jacob and the fact
that he would have been in the first grade. He so enjoyed
preschool and the couple of months of kindergarten.
Two of Jake's preschool friends, Austin and Garrett came
over a couple of weeks ago. The boys wanted to see Jake's
room and we had wanted them to each have a keepsake of
Jacob's. The boys loved being in Jake's room and around
his favorite things. They each chose a wrestler and we
found out from their moms that they treasure them and play
with them everyday. It warms our hearts to know that
so many continue to carry Jacob in their hearts, thoughts
and prayers.

We received some sad new recently. Taylor Johnson and
Kim Esterman (Neuroblastoma patients whom we met in NYC)
passed away. Please remember them and their families in
your prayers.

God Bless you all,
Jerry and Natalie

Wednesday, July 30, 2003 8:28 PM CDT

Hi all,

I wanted to update and let you know how the big race went.
As most of you know, the Rainbow Classic took place on
Saturday July 26th in Green Bay. The day started out
with rain and thunderstorms. The run was postponed from
8:30 am to 9:00 am due to the storms. Despite the adverse
weather, we had almost 600 run participants. I can't begin
to describe my excitement and anticipation prior to the
starting gun. My friend and running "coach" Dawn was
by my side at the starting line. The rain subsided a few
minutes prior to the run beginning....the gun was fired
and we were on our way. I began running a little faster
than my normal pace and by the 1 mile mark, I was beginning
to tire. Jerry's sister Terri was marking the times at
the 1 mile mark and my time was a little over 11 minutes!
A new record for me....and boy could I FEEL it.

My goal all along was to run the 2 miles without having to
stop... so I pushed on. Dawn was encouraging me all the
way and I knew that Jake was "pushing" me along. The final
1/2 mile was torture, but as soon as I saw the finish line
in sight and heard the cheers of so many friends and family,
my adrenaline took over. I finished the run with a time
of 23 minutes, 58 seconds. I was proud of my time, but
more than anything I was proud and thrilled that I accomplished my goal. Jerry was waiting at the finish line
with a proud smile. I hope to include photos from the run
on the website soon. I had tee shirts made with Jake's
Kindergarten picture on the front with a Team Jake logo
and "In memory of Jake Peters 1997-2002 on the back. Several of us proudly wore the shirts and I was glad to
be able to include Jake in this very special day.

I want to especially thank those of you who generously
donated pledges in my name. I was the second highest
pledge raise of the event, raising over $900.00 for the
Families of Children with Cancer. I could not have done
it without you. Please know that this money will be put
to good use by our group. Thank you for your faith in
me and your support.

This past weekend was also marked by the event of Jake's
memorial FINALLY being placed at the cemetary. As fate
would have it, the stone was placed Friday, the day before
the run. We have waited for over two months for his memorial and it is no coincidence that it arrived the day
before the run.

We are so happy that you continue to check in on us via
this website.

Love,
Natalie, Jerry, Alex, Ben and our Angel Jake

Monday, July 21, 2003 9:16 PM CDT

Hi everyone,

Just wanted to send a quick update and let you all know
that my new job is going well. I can't wait to get passed
the initial stage of feeling inadequate and nervous.
It feels good to be part of the working world again.

The running is going well too. I continue to run 2.2 miles
every other day and I am anxiously awaiting Saturday's event. I want to thank you for your generous pledges.
We are so fortunate to have such caring and generous friends. The funds raised will be put to good use by
our group for families in NE Wisconsin and the UP of
Michigan. Please visit our groups' website at
www.ourkidswithcancer.com to see what The Families of
Children with Cancer group is all about. Jake was able
to participate in alot of the social events during his
illness. The group will always be dear to us.

We hope all is well with all of you and your families.
Thank you again for your love and support.
Natalie, Jerry, Alex, Ben and our angel Jake

Saturday, July 12, 2003 5:13 PM CDT

Hi everyone,

Well, we returned safely from our trip to New Jersey. It was a very healing trip for our family. We
were able to visit relatives that we haven't seen in ages, saw the two homes that we lived in while
in Burlington, New Jersey and many other familiar landmarks from my childhood. I loved being
able to share that part of my life with Jerry and I know that Jake was with us as well.

My grandfather's funeral was exactly what he would have wanted....it was held at St. Paul's Catholic
Church which was the church that our family attended for many years. It was a beautiful, traditional
Catholic funeral mass. My grandfather's grandsons and nephews were pall bearers. Grandpop's
final resting place is beside my grandma Nellie, my dad and my uncle Frank. I know that grandpop
is at peace and is enjoying eternity in Heaven with Jake and so many other family members.

Alot is going on here....I am beginning a new job on Tuesday July 15th. I will be working at
the Howard Chiropractic Clinic near our home. Dr. King has been my chiropractor for over 8 years
and I am looking forward to being a part of his growing practice. The clinic is expanding and moving
to a new building at the end of August. The practice is growing to include a wellness center,
massage therapy and other services. We hope to include programs and services for cancer
patients in the near future.

I have been waiting for the right time and the right opportunity to start working again and it seems
as though my prayers have been answered. I am looking forward to the much needed diversion
in my life and to be able to work with and help people.

I have also been training for the past 5 weeks to run in a race on July 26th. Our Families of Children
with Cancer group is holding their annual Rainbow Classic run/walk. This is our groups' only fund
raiser. I have never run before, but began training in early June with the help of my friend Dawn. I hope to complete the 2 mile run in Jake's memory. I ran 2.2 miles on Thursday, so I am on my way. It has been tough, but Jake has been my inspiration. When I feel like giving up, I remember Jake's strength and courage
throughout his illness and quickly realize that I have NOTHING to complain about. I can almost
feel Jake pushing me to the finish line. The race is being held at Green Isle Park in Allouez (a
suburb of Green Bay) It begins at 8:30 am...all are welcome. It anyone would like to participate,
volunteer or just come to cheer the runner on, please go to our website at www.ourkidswithcancer.com
and click on the Rainbow Classic.

I am collecting pledges for my efforts. Any and all donations would be greatly appreciated. Please
make checks payable to Families of Children with Cancer, Inc. You may mail them to me at
3399 Fairview Road, Green Bay,WI 54313. All funds raised will be used locally by our group
to send cancer kids to camp, provide wigs for those who need them, social events for the kids and
their families and financial support for medical bills for those families in need.

Thank you all for your generosity. I will let you know how the race goes. Wish me luck.
Love, Natalie Jerry Alex Ben and our angel Jake

Tuesday, June 24, 2003 12:18 AM CDT

Hi everyone,

I wanted to let you know that I have updated the photos
on the website...please take a look.

One of the pictures is of a balloon release that Jake's kindergarten class did in his memory on their last day of school, June 11th. Jake's teacher, Mrs. Meyers called us and asked if we would like to be present for the balloon release and she told us that Jake's classmates had signed a yearbook that they wanted us to have. Jerry and I were
so touched that the kids wanted to include Jake in their
celebration. It was extremely emotional for both of us.
Each child had their own balloon that had a card attached
to it with Jake's name and kindergarten photo. The children
each signed their name on their card as their special gift
to Jake. Before the balloons were released, the kids closed
their eyes and made a special wish for their friend.

They were so excited to release the balloons and see them
float to Heaven. One by one, we heard little voices
yelling to Jake, "I love you Jacob Peters," I
miss you Jacob Peters," "Thanks for being my friend, Jacob,"
and so on and so on. By then, Jerry and I were reduced
to puddles of tears. The children then presented us with
the yearbook and they were so proud of their signatures and
we were touched by the gift. We are so proud that Jake
had such a profound impact on his teacher and classmates
in the short time that he attended kindergarten. We are
eternally grateful to Mrs. Meyers and the parents who
helped plan this touching memorial to Jake.

We hope everyone's summer is going well. Jerry is busy
working on the farm and I have been keeping busy with
projects around the house and volunteering. We have also
been busy with graduation parties.

I have started running(actually jogging) I will be running
2 miles in The Rainbow Classic being held on July 26th.
This event is the only fundraiser that our Families of
Children with Cancer group holds each year. I will be
running in memory of Jake and I am hoping that his strength
and courage will be my inspiration to finish the race.

Jerry and I will be leaving for New Jersey on Thursday to
attend my Grandpa Nick's funeral. He was 88 years old and
led a full and happy life. He died suddenly last Friday. We are comforted by the knowledge that he has been reunited
with Jake and that they are caring for each other.

Take care.
Natalie, Jerry, Alex, Ben and our angel Jake

Sunday, June 15, 2003 7:31 PM CDT

Hello everyone,

We would like to wish all of the Father's out there a
very Happy Father's Day. We hope you enjoyed a relaxing
day with your families. Thank you for your cards and
phone calls to Jerry today. He truly appreciated everyone's
thoughtfulness.

We went to Alex's baseball game today and then out to
dinner with Alex, Ben, Gramma Clarie, Grandpa Jerry and
Jerry's sister Terri and brother-in-law Mike. As always,
Jake was dearly missed. He LOVED watching his big brother
play ball and we all missed that "little voice" cheering
for Al.

The following is in honor of all of the fathers who have
lost their children. We hope it brings some peace and
comfort.

Far, but Near
by Peggy Werner

You may be gone, but I know that you are near.
I can sense your spirit when an answer comes
To a long, drawn-out question
That has weighed heavily on my heart.

When I feel the darkness in my soul fading,
And when I muster up a little strength to go on,
It isn't like it used to be when I could hear you laugh,
See you smile, and catch the twinkle in your eye.

I want to reach out and hug you,
But it's then that I have to listen to another ear,
See with different eyes and feel another touch.

Because it's a powerful spirit that now surrounds me,
So full of love and help and healing, as always,
But now in a different way.

You may be gone, but I know you are near.

Sunday, May 18, 2003 11:35 AM CDT

I want to apologize for the delay in the updating the
journal, but I have been trying to stay very busy the
past couple of weeks.

I want to thank everyone for the touching, heartfelt
Mother's Day emails, guestbook entries, cards and phone
calls. I was once again overwhelmed by everyone's
thoughtfulness. I "survived" the day fine. I was able
to spend time with both my mother-in-law Clarie and my
mom. Of course, the day was bittersweet as are so many
days since Jake's passing, but I felt Jake's love and
presence with me on Mother's Day.

Jerry gave me a very special gift that has a special story
that I would like to share with you. I have always talked
of wanting a mother and child pendant. I have liked the
abstract style with the shape of larger head and smaller
head that form a heart or a circle. Jerry went to the
jewelry store the Friday before Mother's Day in search of
just the right gift. The store only had one style of
pendant left and it was a cameo style in blue and white
with a detailed mother and child on it. Jerry knew immediately that I would not like that style. He was
ready to leave the store, when he felt the need to go back
to the clerk and ask the price of the pendant. He later
explained how strange it was to be asking the price of
something that he had no intention of buying. When the
clerk turned the pendant over to check for a price, Jerry
saw the words..."Gift from Heaven." He know immediately
that this was the gift he needed to give.

The clerk then asked him if he would like to purchase a
cute stuffed teddy bear. Jerry said no, and she proceeded
to tell him that for every bear purchased, $6 is donated
to the Make-A-Wish foundation. Jerry knew that someone
was "speaking" to him and that the signs were there. So
he bought the necklace and the bear. Jerry surprised early
on Mother's Day with this extraordinary gift. I will
cherish it always, knowing that it was sent from Jake.

I came across this poem at the Compassionate Friends meeting
last week and I would like to share it with you. I would
like to dedicate it to all of the mother's who have lost
a child...no matter what age. May you too find peace
and comfort in your child's unending love for you.


A Mother's Day Wish From Heaven... By Jody Seilheimer

Dear Mr. Hallmark,
I am writing to you from Heaven, and though it must appear
A rather strand idea, I see everything from here.
I just popped in to visit your stores to find a card
A card of love for my mother, as this day for her is hard.

There must be some mistake I thought, every card you could imagine
Except I could not find a card, from a child who lives in
Heaven.
She is still a mother too, no matter where I reside
I had to leave, she understands, but oh the tears she's
cried.

I thought that if I wrote you, that you would come to know
That though I live in heaven now, I still love my mother so
She talks with me, and dreams with me, we still share
laughter too,
Memories our way of speaking now, would you see what you
could do?

My mother carries in her heart, her tears she hides from
sight.
She writes poems to honor me, sometimes far into the night
She plants flowers in my garden, there my living memory
dwells
She writes to other grieving parents,trying to ease thier
pain as well.

So you see Mr. Hallmark, though I no longer live on earth
I must find a way to remind her of her wondrous worth.
She needs to be honored and remembered too
Just as the children of earth will do.

Thank you Mr. Hallmark, I know you'll do your best
I have done all I can do; to you I'll leave the rest.
Find a way to tell her, how much she means to me
Until I can do it for myself, when she joins me in eternity.

Sunday, April 27, 2003 9:32 PM CDT

Hi all,
We wanted to let you know what a GREAT trip to New York
we had. We had beautiful spring weather in New York City
everyday. We were able to see and do everything that we
had hoped to. Alex and Ben said that they loved the
city and they were glad to be able to experience alot of
the same things that Jake did during his time in New York.

We stayed at the Crowne Plaza Hotel right on Broadway in Times Square. We were right in the heart of it all.
We visited Central Park, FAO Schwartz, Tiffany's, the
Plaza Hotel, the World Trade Center, Grand Central Terminal,
Battery Park, Soho, Greenwich Village and many other sites.

We spent Saturday at the Ronald McDonald House showing the
boys where Jake spent so much of his time. We visited with
the volunteers and employees that had been so kind to us
during our stays there with Jacob. They shared their own
wonderful, funny memories of Jake and they were all happy
to meet Alex and Ben and to see us again.
We sponsored a dinner for the families at the RMH on
Saturday night in memory of Jacob. It brought back so
many memories sitting in the dining room and sharing dinner
with the many children and their families. Jacob loved
being at the Ronald McDonald house with all of the other
children. The families were touched by our story and grateful for the dinner. It was a wonderful Italian meal catered by Tony De Napoli's restaurant.

On Easter Sunday we returned to the Ronald McDonald house
of Easter brunch and then we walked to Central Park. It
was a beautiful, warm day and we relaxed on a grassy hill
in the park and listened to "Dave The Guitar Man." We
had met Dave two years ago when he performed at the Ronald
McDonald House. He is a talented singer, songwriter. He
remembered Jerry, Jake and myself and was happy to see
us and very sorry to hear about Jake's passing.

On Monday we went to the Pediatric Clinic at Memorial
Sloan Kettering Hospital. We were able to visit with the
many nurses and staff that cared for Jacob during his
surgery and antibody treatments. Dr. Kushner and Dr.
Cheung kindly took time out of their busy day to visit with
us. They were so glad to see us and actually quite shocked
that we had the courage to return. We didn't feel very
courageous, we just felt compelled to honor Jacob's memory
by thanking all of the wonderful people who had helped us
during the most difficult time of our lives. We presented
Dr. Cheung with a check in Jacob's memory to be used
specifically for Neuroblastoma research. We hope and pray
that someday soon a cure will be found.

Our trip was filled with many bittersweet memories of
Jacob and new wonderful memories made with Alex and Ben.
We know that Jacob was with us in spirit throughout the
trip. He always loved New York.

Thank you for keeping in touch with the website.
We will update again soon.
Love, Natalie Jerry Alex Ben and our angel Jake

Wednesday, April 16, 2003 5:36 PM CDT

Hi everyone,
We wanted to let all of you know how we spent Jacob's
birthday yesterday.
Jerry worked all day in Appleton taking apart a grain
bin that he bought at an auction. It was a good thing
for him to keep busy.

I went to mass at our church at 8:30 am and lit a candle
for Jake. I thanked God for the wonderful gift He had
given to us 6 years ago and how blessed my life was
by Jacob. I went to his gravesite after mass a placed
3 mylar balloons (1 Spongebob, 1 Bob the Builder and 1
heart shaped "We Love You") It was a warm, sunny, windy day and I tried to take a moment and enjoy the beauty of it.
Later in the morning I brought a birthday treat to Jake's
kindergarten class. Mrs. Meyers said that the children
were looking forward to it and that they wanted to
celebrate their friend Jacob's 6th birthday. The children
loved the peanut butter cereal bars with chocolate frosting
(one of Jake's all time favorites). They wanted to know
how we were going to be spending Jake's birthday and they
were thrilled when they heard that we were going to be
lighting fireworks at night.

The children were so sweet....they reminded Mrs. Meyers
that they needed to sing "Happy Birthday" to Jacob.
I must confess that it was one of my weakest moments of
the day, but I know that Jacob loved being serenaded by
his classmates. It was very touching.

Alex and Ben came over to feast on chocolate cake with
chocolate frosting and chocolate custard. We each
released a blue balloon into the dark, cloudy sky and
they soared high. Thanks to Kathy and Chuck Toonen for sending us the balloons. The weather had turned rainy and windy in the early evening with thunderstorms, but we still
lit our fireworks. I'm sure the neighbors thought we
were nuts. Jacob helped with his own light show. It
seemed that with each firework we lit, the sky responded
with brilliant lightning. Just like our Jake to have the
last "word."

The day was filled with bittersweet thoughts and memories,
but we are glad that we celebrated in a way that Jacob
would have loved.
We want to thank so many of you for the thoughtful cards,
momentos, phone calls and emails yesterday. It is comforting to know that our family was in your thoughts.
Thank you for helping us keep Jacob's memory and spirit
alive.

We are leaving Friday for New York, so I will update the
website when we return.
Love,
Natalie, Jerry, Alex, Ben and our angel Jake

Monday, April 14, 2003 6:02 PM CDT

Hi everyone,

It is the eve of Jacob's 6th birthday. We know that
tomorrow will hold many bittersweet memories for us.
We will always cherish the day that Jacob came into this world and the 5 wonderful birthdays we were able to
celebrate with him. I remember last year's birthday
extravaganza. Jacob had three birthday parties including
his first party with his preschool friends. I re read
my journal entries from this time last year and relived
the excitement and joy of his birthday last year.
We are so grateful for those memories.

We don't have much planned for tomorrow. I will go to
church, place balloons at Jake's grave and Alex and Ben
will join us for Jake's favorite...chocolate cake with
chocolate frosting and chocolate custard. As always, Jake
will be close by celebrating with us.

We are looking forward to our trip to New York. We leave
this Friday and will return on the 22nd. Alex and Ben
are excited to the see the city and experience some of
the fun things that we did with Jake while there.

Thank you all for your prayers, emails, phone calls
and good thoughts. We appreciate it.
Love, Natalie Jerry Alex Ben and our angel Jake

Sunday, April 6, 2003 6:19 PM CDT

Hello all,

I thought I would update you on what's been happening with
us. First, I would like to give you the revised amount
raised at the March 15th St. Baldrick's Day event. The
new total is $42,000.00. We are thrilled with the final
tally. We are getting excited for next year's event.
Don't forget to log on to www.stbaldricks.org if you
want to see photos of the shavees and learn more about this
worthy cause.

We are doing okay. Our crazy Wisconsin weather has not
been helping our cabin fever and moods. Last Thursday
and Friday we had everything from sleet, freezing rain,
ice covered roads and about 4 inches of snow. Our ground
is once again covered in a blanket of snow. How depressing!! Spring can not come soon enough.

Alex and Ben seem to be doing fine. Alex and his high
school baseball team spent a week in Florida playing
games and practicing. A sort of "spring training."
Ben stayed with us during that week and we enjoyed having
some "noise" around the house.

Jerry is getting anxious for the upcoming planting season,
if only the weather would cooperate. Friday evening I
gave a presention to a group of Radiation Therapists from
area hospitals on "Having a Child with Cancer." The
radiation therapists who cared for Jacob asked me if I would be interested in sharing our story with their group.
I accepted the invitation in hopes that I could offer insight in to the personal side of cancer. The presentation went well, although I was extremely nervous.
This was my first public speaking engagement and it is
very intimidating to stand up before 55 people. Luckily for
me, I have a guardian angel who helped me through the
evening. Thanks Jake!!!!
I was honored and proud to share Jacob's story of his
brave struggle with cancer and the ways in which we were
supported throughout his treatment.

The feedback has been very positive and based on the questions posed after the presentation, the health care
professionals who attended found Jacob's story inspiring
and educational.

We are preparing for our trip to New York on April 18th with
Alex and Ben. The visit, like so many other things in our
life will be bittersweet. Jacob loved New York and the
wonderful people that he met there. It will be difficult
visiting the city without him. Alex and Ben are anxious
to see the Ronald McDonald House, the clinic and everything
else that Jake experienced while there.

Thank you all for your continued interest in the website
and for keeping us and Jacob close in thought and prayer.
Take care,
Natalie, Jerry, Alex, Ben and our angel Jake

Monday, March 24, 2003 11:18 AM CST

Hi everyone,

I wanted to let you know that our St. Baldrick's event
on March 15th was a huge success. This is only the
second year that Green Bay has hosted the event and we
raised almost $30,000.00 for the National Childhood
Cancer Foundation. This amount is triple what we raised
last year. Everyone who participated had a great time for
a great cause. We had 35 shavees who bravely volunteered
to have their heads shaven (including 6 women)

The event was covered by local tv and radio stations and
we thank them for their time and for getting the message
out. Along with raising funds, we also raised awareness
about childhood cancer. We are already looking forward
to next year's event. Thanks to all who contributed
time, money and services to make St. Baldrick's Day a
success.

On the homefront there is not much to report. Jerry and
I continue to struggle daily with the loss of Jacob and
we know that tougher times lie ahead. Jacob's 6th
birthday is just three weeks away and although we plan
to "celebrate" his life that day it is going to be difficult
beyond belief.
I attended my first Compassionate Friends meeting last
Thursday night and found it comforting to be with a group
of parents who have experienced the loss of a child. The
group meets once a month to discuss and share our losses.
I hope that Jerry and I can attend more meetings in the
future.

We want to thank all of you for continuing to check this
website. We also want to thank you for your thoughts and
prayers...we need them as much now as we ever have.

Love, Natalie Jerry Alex Ben and our angel Jake

Monday, March 10, 2003 6:35 PM CST

I wanted to let all of you know that I have volunteered
to help with this year's annual St. Baldrick's Day event
being held in Green Bay this Saturday, March 15th.
As many of you may remember, Jerry participated as a
shavee last year said goodbye to his hair to raise money
to benefit the National Childhood Cancer Foundation.

This is Green Bay's second year participating in the event
and to date we have 30 shavees signed up. At least 6 of
them are WOMEN. Jake's doctors Brandt and Jogal are
participating again this year along with two female nurses,
Terri and Lori who took care of Jake.

I would like to ask each of you to log onto www.stbaldriks.org and log onto the Green Bay location.
We would greatly appreciate any donations made to this
worthy cause. The funds raised go directly to pediatric
cancer research.

We are looking forward to this event and we hope to once
again be able to honor Jacob's fight with cancer.

Thanks again,
Natalie, Jerry, Alex, Ben and our angel Jake

Sunday, March 2, 2003 5:54 PM CST

Hi all,

Jerry and I made it back from our trip to Vegas safe and
sound. We had a nice time taking in all of the sights
and sounds. It was nice to get away and relax a little.
We felt Jacob with us throughout our trip. He continues
to give us "signs" that he is never far from us.

Yesterday marked three months since Jacob's heavenly
birthday. We never thought it possible, but we miss him
more with each passing day. We are trying to find comfort
and strength in our faith that we will one day be united
with Jacob for eternity. What a glorious day that will
be.
We are starting in on some "projects" around the house.
Jerry installed an exhaust fan in our second bathroom
today and I spent the weekend "cooking up a storm." Alex
and Ben are spending the week here while their mom is on
vacation, so it doesn't seem so futile cooking for more
than just Jerry and I.

We are anxiously awaiting Spring. It continues to be
cold in Wisconsin (10 degrees today) so we can't wait for
the Spring thaw.
We have ordered Jake's headstone for the cemetary and
it should be in place by Memorial Day.

I thought we would include this article from a woman
who lost her husband in the Sept 11th attacks. She lists
ten suggestions to help her loved ones begin to understand
her grief and what is happening to her. We thought you
might be interested.

1. Don't try to fix us. There is no magic pill.
2. Don't tell us to snap out of it- we can't. We know
you are uncomfortable seeing us in pain, but we will recover
at our own pace, not yours.
3. Don't take it personally if we don't return your phone
calls. We are trying to get through each day intact. If you
care about us, keep trying.
4. Don't be afraid to talk about our loved one. We find
comfort in knowing that other people miss them too. We want
to hear your stories and special memories.
5. Don't assume the role of stand-in parent for our children. For us there is no substitute.
6. Don't tilt your head and look at us with puppy dog eyes.
We don't want pity.
7. Don't ask about our financial situation. It's none of
your business.
8. Don't harp on how strong we are. We're not trying to
be role models. You may see us as strong, but chances are
we fall apart when you're not around.
9. Don't be put off by our moodiness. Some days we want
to be social, other days we don't.
10. Don't abandon us. We need you just as much a year
later as we did a month later. And when things are better,
we will remember how you were there for us.
----Taken from the article "Don't be afraid to talk about
my husband." By Jill Goldstein

With continued love and thanks,
Jerry, Natalie, Alex, Ben and our angel Jake

Thursday, February 13, 2003 11:10 AM CST

Hi everyone,
We are sorry that our journal entries are so far apart these days. We would like to be able to tell you that it
is because we are SO BUSY, but the truth is we are struggling with what to write.

We have both experienced many low moments over the past
two weeks and therefore have not felt much like "sharing."
We have been trying to stay busy...Jerry has been attending
farming seminar classes every Tuesday and he has also gone
to a couple of farm auctions in other states. There is
always something that can be done on the farm that offers
Jerry some distraction.

I have been trying to determine what direction to take
with my career. As many of you may know, I resigned from
my sales position with McKesson back in mid December.
Although I enjoyed my long career with McKesson, I knew that
it was time to "take a break." Jerry and I needed to spend
some time together and seeing that winter is his slow
time it made sense to do it now. I also know that I need
to find a career with more purpose. I feel that I have
more to offer and may be able to help other children and
families based on my past experiences. I now face the
dilemna of WHAT that will be. I am considering returning
to college this summer to pursue a degree in Psychology/
Social Work.

We are continuing to distribute the memorial donations.
It feels good to be able to give back to so many of the
organizations that gave so much to us. We want to thank
you all again for your generous donations.


We would like to share another "Jake" memory with you from
a memory card we received.
"Jake and I were playing Go Fish and we were on the last
round when I said, this gamis for all the marbles. About
3 minutes later Jake asked, "wait a minute, do you even
HAVE any marbles?" So we went downstairs and got a bag full
of them. When we resumed our game of Go Fish Jake oggled
at the marbles and said, "Boy, whoever wins all the marbles
is sure gonna be a lucky kid." He won, (of course) but he
only took one blue marble which he thought was the best."
From Nicole Warwick.

Thank you for your continued thoughts, prayers, phone calls,
emails and cards. We gather strength from the knowledge
that you continue to carry Jacob and all of us in your
hearts.

Natalie, Jerry, Alex, Benn and our angel Jake

Saturday, February 1, 2003 10:34 PM CST

Hi everyone,

It is hard to believe that Jake began his new life in
heaven two months ago today. We miss him more with each
passing day. We long to see him come through the door
and hear his joyful laughter filling our home.

I was able to personally present Children's Hospital of
Wisconsin in Milwaukee and the Ronald McDonald House in
Milwaukee with the donations in Jake's name. Our friend
Jill needed to go to Children's to visit a friend's son
who is 6 years old and had neurological surgery on Wednesday. Jill asked me to ride along and I was happy
to be able to go back to Children's and visit some of
the staff that helped to care for Jake the two times that
he was admitted there. We had not been there since
July 2002 when Jake had his MIBG scan.

I was able to visit with Lynette, Maureen, Sherry and
Dr. Casper who where all involved with Jake's care during
his stem cell transplant in January 2001. It was nice
to talk about Jake with them and remenisce about our
time spent at Children's Hospital. Jake loved that hospital with its room service menu, great playroom and
the "coffee shop" with cherry slushes. We hope that
our donation will bring some happiness to other children
that find themselves in the hospital.

Jerry and I are planning a short trip to Las Vegas at
the end of February. We think we have it narrowed down
to the 23, 24, 25 and 26th. We don't expect the trip to
make things better, just a change of scenery.

Here is a funny "Jake moment" that most of you have not
heard. Jerry took Jake with him one evening to Roger
Schuh's house ( someone Jerry rents land from) and they
saw a snowmobile outside that was smashed with the ski
broken. Jerry asked what had happened and Roger explained
that his oldest son was driving the sled and could not
see the culvert and he hit it and broke the ski off of the
snowmobile. Jake asked Jerry what they meant and Jerry
explained, "the ski is the part of the snowmobile that
goes on the snow." Jake interrupted, rolled his eyes,
sighed and said, "Dad, I know what the ski is, WHAT'S A
CULVERT!!!!!

Love,
Natalie, Jerry, Alex, Ben and our angel Jake

Wednesday, January 29, 2003 at 11:26 PM (CST)

Jerry and I are in the process of distributing the
generous memorial donations that many of you contributed.
We thought you might like to know where the funds will
be going. Our sincere hope is that these donations made
in Jacob's name will help other children and their families. We hope and pray that someday soon a cure will
be found for all childhood cancers.
We want to thank all of you for your generosity.

Neuroblastoma Research- Dr. Cheung- Memorial Sloan Kettering
Cancer Center- New York
Children's Hospital of Wisconsin- Milwaukee
The Ronald McDonald House- Milwaukee
The Make A Wish Foundation
The Families of Children with Cancer- Green Bay
The Ronald McDonald House- New York
St. Vincent Hospital-Pediatric Unit

We also wanted to mention that we are compiling a Memory
Book comprised of people's special memories of Jacob.
Memory cards were available at the wake and funeral, but
if there is anyone who would like to share a memory or
story about Jacob and did not receive a memory card, please
feel free to email me personally or on the website guestbook. We would love to hear from you.

Thank you,
Natalie, Jerry, Alex, Ben and our angel Jake

Friday, January 24, 2003 at 07:51 PM (CST)

We are sorry that we have not updated the website in
awhile. We have "bad" days and "not so bad" days, so we
don't have much to report. Each of us continues to
grieve in our own way. Jerry misses his time in the evenings with Jake when they used to cuddle on the couch,
watching wrestling, baseball, football or the "sport du jour." Each night before bed, Jake would insist that Jerry
"race" him down the hallway to bed. There were nights when
Jake's legs would hurt or he didn't have much energy, but
he still wanted to race and so they would. Jake would whisper to me and ask me to interfere with Jerry to insure a win for Jake. Of course, I would gladly oblige. Jake would always prevail!

I miss my constant companion and my "best friend." Jake and
I would share wonderful conversations and many, many laughs.
His intellect, wit and personality filled my days with so
much joy. I find myself talking to him all the time, knowing that he is still with me. So many things hurt...
a simple trip to the video store tugs at my heart when I
see the new release movies that Jake couldn't wait to see.
I find myself gravitating to the wrestling shelf to see
the many videos that Jake had rented. He would spend so
much time standing in front of the offerings struggling
to decide which ones to rent. Of course, he always remembered which ones he had already seen.

Our days are filled with so many memories...some make us
smile, some make us laugh, they all make us long for a time
when we will all be together again.

We thought we might begin sharing some of our and others
memories and stories of Jake. We hope that they will bring
joy and laughter to your lives as they have to ours.

We would like to ask that you remember the Wulf family in
your prayers. Bryan passed away yesterday at home surrounded by his family. He was 7 years old and bravely
battled his Neuroblastoma for 3 years. May he find the peace and freedom that he deserves.

With our love and thanks,
Natalie, Jerry, Alex, Ben and our angel Jake

Saturday, January 11, 2003 at 12:44 PM (CST)

Please check the photo album. We have updated the
pictures.
We hope you enjoy them.

Natalie, Jerry, Alex, Ben and our angel Jake

Thursday, January 02, 2003 at 01:23 PM (CST)

To say that the holidays were difficult would be the
understatement of the century. Although we spent some
joyful moments with family and friends, there was no
escaping the depth of our pain and loss. Memories of
Christmas' past and the unescapable pain of "what might have beens," fill our days. We are happy to see the
holidays come to and end. We look forward to the new year
with hope.

I have been reading a wonderful book titled "A Grace Disguised" by Gerald L. Sittser that deals with how the
soul grows through loss. I would like to share a few
passages with you that have helped me to define our loss
and how it will forever change our lives.

"Recovery from catastrophic loss is a misleading and empty
expectation. We recover from broken limbs, no amputations.
Catastrophic loss by definition precludes recovery. It will
transform us, destroy us, but it will never leave us the
same." "Sorrow never entirely leaves the soul of those who
have suffered a severe loss. If anything, it may keep going
deeper." "It enlarges the soul until it is capable of
mourning and rejoicing simultaneously, of feeling the world's pain and hoping for the world's healing at the same
time.

Tuesday, December 24, 2002 at 12:36 PM (CST)

May all of you find peace, comfort and love during this
blessed holiday season.

Happy Holidays,
Jerry, Natalie, Alex, Ben and our Angel Jake

Friday, December 20, 2002 at 07:17 PM (CST)

We continue to be touched and amazed by the outpouring of
love and support we have received via this website, cards,
gifts, memorials etc. Jacob truly touched many hearts
and lives!! We are all doing as well as can be expected.
Alex and Ben begin their Christmas break today and they
are looking forward to the time off. They are dealing
with their loss in their own way. We are thankful to
the many friends, teachers, coaches and counselors who
have made themselves available to Alex and Ben for support.

Jerry and I continue to find ways to fill our long, lonely
days. This is no small feat. Jacob was our LIFE and we
miss him more each day. His laughter, loving touch and love filled our home unlike anything every has. We are
trying to seek peace and comfort in the many wonderful
memories we have of our life together.

Thank you for continuing to check in on us. We hope to
keep up with the website in memory and honor of Jacob's
amazing life.
Please remember Bryan Wulf in your daily prayers. He has
been experiencing more pain lately from his Neuroblastoma.
We hope that Bryan and his family may have some peace and
comfort this Christmas season.

Our love and gratitude,
Jerry, Natalie, Alex, Ben and our Angel Jake

Saturday, December 14, 2002 at 10:16 PM (CST)

We are updating to let all of you know that we are doing
fine. We seem to have so...... much time on our hands.
Our lives are empty without Jacob. He filled our days and
our home with so much love and laughter and we miss him
terribly. Jerry and I are trying to keep ourselves busy
with some Christmas shopping and spending time together.We have gone out to dinner a few times which feels so strange
since our social life has been "on hold" for the past
2 years. Of course, we spend most of the evening sharing
"Jake stories."

We are so grateful for all of the cards, notes, poems and
website guestbook entries from everyone. We are deeply moved by the stories all of you are sharing with us about Jacob and the impact he had on so many lives.

We wanted tell you a little about Jacob's funeral service
on December 4th. It truly was a beautiful event. We
asked 6 members of the BayPort football team (Jake's brother
Al's teammates) to place the white pall on the casket in
preparation for the funeral mass. The boys wore their
football jerseys and it meant so much to Jerry and I. Jake
loved going to Alex's football games and he didn't miss a
single home game this season. We had close family friends
participate in the mass with Bible readings. The ceremony
included inspirational songs such as "With Hope" by Steven
Curtis Chapman, "Walk On" and "It is Well" by 4Him. One of
the most memorable and beautiful moments of the service was
a solo performed by a dear friend of ours named Joe. Joe
lost his beautiful daughter to cancer over 13 years ago. He
sang the song "Tears in Heaven" by Eric Clapton. Joe sang
with so much emotion and heart...for both his daughter and
Jake. We are forever grateful to him for creating such a
wonderful memory for us.

After the service, 100 balloons were distributed to friends
and family. Those with balloons proceeded outside and as
Jacob was driven up the hill to the cemetary, we released
the balloons and they floated up to the beautiful, sun filled blue sky. We know that Jacob enjoyed the amazing
sight.
We want to extend our heartfelt thanks to all who attended
the service and to all of our dear family and friends whose
time and effort made Jacob's funeral BEAUTIFUL!!! Thank
you for helping us to celebrate Jacob's life.

Our love,
Natalie, Jerry, Alex, Ben and our Angel Jake

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

Hello dear family and friends,
We want to continue to update Jacob's webpage. We are
overwhelmed with the numerous guest book entries. We knew
that Jacob's life had an impact on many people, but we
never knew just how many. How comforting your words are
to us...even those from complete strangers. What more could
we have asked for than the distinct honor and privilege
to be parents to such an inspirational human being. We
have read countless notes and cards telling us of the
indelible mark Jacob has left on their lives. We have been
happy to share him with the world.

His wake and funeral service were beautiful!!! They truly
were a tribute and celebration of Jake's life. He would
have loved it all!! We will post more details in the days
to come. Please know that Jerry and I are comforted by
the time we had with Jake and the many opportunities during
his short time here on earth to tell him how much he means
to us. We are filled with only happy, peaceful memories and
no regrets.

We would like to pass along this article in a local paper
regarding a special way to honor the death of a child. We
hope that all who can will participate.
We love you all and will update soon.
Natalie, Jerry, Alex, Ben and our angel Jake

"When a child has died, the usually festive holidays can be
a time of deep sadness and depression for families trying to cope with this devasting loss. I want to make your readers aware of a way they can remember and honor a child-
and all children of any age whose life has been cut short.
The Compassionate Friends is a national self-help support
organization for families that have experienced the death of
a child. We invite all your readers to light a candle for one hour at 7 pm Sunday Dec 8th during the Compassionate
Friends Worldwide Candle Lighting. The candles are first lit in New Zealand, and then an hour later in the next time
zone, eventually encircling the globe in a virtual 24 hours
wave of light.
With nearly 600 chapters in the U.S and a national presence in 26 countries around the world, there will be
hundres of organized memorial services. A listing of many of these can be found at The Compassionate Friends Web site
(www.compassionatefriends.org). Thousands of informal candle lightings also will be held in homes of friends and
families, or alonge in quiet solitude.
Those remembering a child who has died are invited to share their thoughts on Dec. 8, on the message board at our
Web site. For more information, your readers are welcome
to check our Web site or call our national office at 1-877
-969-0010." Patricia Loder, Executive Director, The
Compassionate Friends

Monday, December 02, 2002 at 12:40 PM (CST)

Jacob peacefully went to the arms of Jesus on Sunday December 1 at 3:35am. He died in his home
in our arms. We are so blessed to have spent his last moments on earth by his side. His body
could not fight any longer. We miss him more than words can say, but we are so happy for him
that his suffering has ended.

The arrangements are as follows; The wake will be Tuesday Dec 3, 2002 from 3:30pm to 8:00pm
at Saints Edward & Isidore Catholic Church 3667 Flintville Road Green Bay, WI 54313. There
will be a showing on Wednesday Dec 4, 2002 from 9:00-11:00am at the church followed by the
funeral service at 11:00am. A luncheon will follow in the church hall. There will be no burial
service.

In lieu of flowers, memorials to the family will be distributed to Neuroblastoma research and other
charities that have helped Jacob throughout his illness. Our address is 3399 Fairview Road
Green Bay, WI 54313.

Directions to the church:
From the north: Take Hwy. 41 south to Suamico, take Sunset Beach road (Cty B) exit and go west. Follow
Cty B approximately 3-4 miles to Cty M. Turn left on Cty M and the church is 3/4 mile on the right.

From the south: Take either Hwy 43 North to Green Bay or Hwy 41 north to Green Bay. Proceed
on Hwy 41 North to Suamico. Exit on Sunset Beach road (Cty B) and go West. This exit is approximately 5 miles
north of Green Bay. Take Sunset Beach Road to County Road M. Turn left on Cty M and the
church is 3/4 mile on the right.

We would like to thank all of you for your continued love and support over the past two and a half
years. We know that Jacob made an impact on each of your lives and that he will never be
forgotten.
We hope to see all of you soon.
Our love,
Natalie, Jerry, Jake, Alex and Ben

Saturday, November 30, 2002 at 12:48 PM (CST)

Jacob continues to improve daily. He spends more time
awake and alert and continues to eat more each day. He
enjoys eating chocolate custard, waffles, cereal and
chocolate cake. He continues to drink a variety of things.
His kidneys seem to be functioning better. His creatinine
level is down to 0.7. His ANC is still low, but his platelet level shocked us. Jake received platelets on
Wednesday and on Friday is platelet count was a whopping
117,000. This is a record for Jake. We are checking his
platelets again on Monday in case that he would remain high
and not need them transfused on Monday. We honestly can
not remember the last time Jake's platelet level remained
this high.

The hospice nurses have been wonderful. They deliver our
supplies and take care of the blood and platelet tranfusions. It is so convenient to have these done at
home. We are so glad that Jake made the decision to come
home. His care is very manageable for us and we are all
more relaxed and comfortable here.

Thank you all for your continued prayers. We believe that
the power of prayer has once again given Jacob and us the
strength to continue this fight. Thank you for your cards,
phone calls, emails, meals, etc. Our lives are blessed with
so many wonderful, caring people.

We will update again soon.
Natalie, Jerry, Jake, Alex, and Ben

Thursday, November 28, 2002 at 06:00 PM (CST)

Happy Thanksgiving to all of you. We have so much to be
thankful for this year. Jacob is home and continues to
remain comfortable. We had a very peaceful and lovely
Thanksgiving day. Jake started his morning by watching the
Macy's Thanksgiving Day parade. The parade has been
a tradition in my family since I was a little girl. Jake
enjoyed seeing the floats and balloons, especially the
Bob the Builder float and the Blues Clues and Little Bill
balloons.

Gramma Clarie prepared a delicious meal and sent it over
to us. Alex and Ben were here to eat with us and even
though Jake didn't want to come to the table, he participated in saying Grace. I ate in the living room
with Jake. He wasn't in the mood for turkey and the fixins'
but he did eat a piece of chocolate cake, some chocolate
custard and a piece of pumpkin roll dessert. Now I am
convinced he is MY son......he loves desserts!!! He continues to drink well and asks for various foods of which
he takes a few bites. This is a vast improvement from when
we were in the hospital.

Later today, Jake asked us what Thanksgiving was for. We
explained to him that it is a time to reflect and be
thankful for the blessings in our lives. Jake told us
what he was thankful for.....1. For his mom and dad. 2.
To be home from the hospital and 3. He is thankful for the
whole world. He then asked each of us to name three things
that we are thankful for. He told us to take our time
and to remember that this is serious. Jake seemed to
approve of our lists. Jake has been very talkative and
alert today. He continues to be free of pain. He wants
to watch Wrestling videos tonight and have a fire in the
fireplace.

We hope all of you have enjoyed a wonderful day with your
families. Please remember to count your blessings and
be thankful for all that God has given you. We know
how very blessed we are. God gave us the wonderful gift
of this day and we are very thankful.

Blessings to all.
Natalie, Jerry, Jake, Alex and Ben

Tuesday, November 26, 2002 at 03:42 PM (CST)

We want all of you to know that Jacob woke up on Sunday
morning and told us that he wanted to go home. Jerry and
I have been waiting for direction from Jacob as to where
he wants to be. It took alot of coordinating and effort
on the part of the doctors, nurses and pharmacist to get
everything in order for us to go home. They all did a
wonderful job of fulfilling Jacob's wish. We arrived home
around 7pm on Sunday night and Jacob is much more comfortable here.

We put a futon in the living room so that someone can lay by him whenever he wants. He can still feel a part of
what is going on around the house. Our living room is
open to our kitchen and dining area so we are never far
from him. His care is not as difficult as we had thought.
He has a pump which runs IV fluids constantly into one
of the lumens of his central line while another pump runs
continuous morphine in the other lumen. Jacob has not had
ANY pain since we have come home, so his current level of
morphine is adequate. We check his blood pressure, temperature and pulse ox every 4-6 hours and he has oxygen
available through a nasal cannula when he sleeps. He will
be receiving platelet and red cell transfusions at home
as needed, so we are basically self sufficient at home.
Jerry, Alex, Ben and I are all glad to have Jacob at home.
We were given excellent care at the hospital, but nothing
beats home.

The hospice nurse and social worker check in on us everyday
and deliver supplies as needed. Dr. Brandt and Dr. Sach
will also be making home visits everday as well. We think
they miss seeing Jake and want to be sure they check in on
him.

Jake is sitting up more often on the bed and drinking lots
of liquids. He asks for 6 or 7 drinks at a time!! I am
going to have to start writing his order down.... 7-up,
Capri Sun juice, red cream soda, cherry coke, crushed ice,
slushes and ice water. He ate some yogurt yesterday which
was the first solid food he has had in days. He is still
very tired, but seems to rest very comfortably. Our biggest concern right now is Jacob's kidney function. He is
not retaining fluid, but his kidneys are not filtering like
they should be. His BUN level is in upper 90's and his
Creatinine level is above 1.0. The docs feel that it is
only a matter of time before the kidneys shut down and then
he will begin to retain fluid which will be very serious for
Jake.

Please pray that Jacob's kidney condition reverses and that
he continues to gain strength.

We thank you all for your continued caring messages, phone
calls, cards etc. We know that everyone is concerned,
but we are doing fine. We are happy to be home and we continue to live one day at a time. We miss Jacob's laughter and his energy....the house is so quiet. But we
are thankful each day that he is here with us and that he
knows we are here for him and that we love him with all our
hearts.

We hope all of you understand that we are trying to limit the number of visitors to the house. Our private family
time is so precious to us at this time. Please feel free
to call us anytime.

Our faith remains strong and we feel God's presence in our
lives everyday. We thank Him for each new day we can share
with our precious son.

Our love and thanks to all.
Natalie, Jerry, Alex, Ben and Jake

Saturday, November 23, 2002 at 10:09 PM (CST)

Time has been going so quickly while in the hospital. Our
days are busy caring for Jake, meeting with the docs and
just being together. We are still in the hospital. Jake's
pain increased on Wednesday and we increased his continuous
dose of morphine. He is much more comfortable now although
he is sleeping more often. How much we miss interacting
with him. We lay beside him and keep him comfortable, but
we keep waiting for him to "perk" up and talk our ears off.

He continues to receive iv fluids, continuous morphine,
Flagyl (for a c-diff infection), Bumex for fluid retention,
Clonine and Nifedimine for high blood pressure, Kytril for
nausea and Pepcid.

We are still talking about going home, but it will take
alot of coordinating. We met with a Social worker from
Unity Hospice and learned more about the supportive services
they can offer us if we choose to go home. A nurse will
come to the home as much or as little as we like. She
can offer additional pain medication and lighten the load
of home care for us. Platelets can be administered by
Home Health so that we would not have to travel to the
clinic or hospital every other day.

We are waiting for Jake to communicate to us whether or not
it is his wish to go home. He is very comfortable at the
hospital and at the moment it doesn't seem to matter where
he is. We have not asked the doctors how much time they
feel that Jacob has. We feel that Jerry, Jake and I will
all know if/when that time approaches. We feel God's
love and strength everyday and we know that He is with us.

Thank you all for your guestbook entries. We are touched
by all of your heartfelt messages. Thank you for allowing
Jacob into your lives and your hearts. He knows how lucky
he is to be loved by so many.

With love and thanks,
Jerry, Natalie and Jake

Tuesday, November 19, 2002 at 09:46 PM (CST)

I wanted to let all of you know about the beautiful gift
that Jacob made for me for our anniversary. I left the
room and he worked on my gift which such determination
and focus. Jerry said that Jacob would not let anyone
help. He made a turtle out of a paper cup from the room
with 4 small applicator sticks for legs. He colored the
cup green while he laid in bed and drew black circles for
spots and eyes and a mouth. He also wrote is name on
a card and wrote "Mom" and drew a heart and a picture of
he and I. Needless to say I was a blubbering mess when
he gave it to me. Jerry said that part of the joy was
watching him make the gift. He was so excited to see my
reaction. When I was crying, Jake said, "Mom I know that
you are crying because you are happy!"

We have had so many wonderful, touching moments over the
past few days. I am trying to keep track of them by
writing them in a journal.

Jacob wants to go home soon. He finished radiation to
his trachea today, so we are going to try to coordinate
his home care with Hospice and Home Health. We want to
do whatever is best for Jacob and if home is where he wants
to be, then home it is!

Jerry and I continue to read all of your guestbook entries.
We are touched that Jacob has made such an impression on
so many of you. Your love for him shines through in your thoughtful, heartfelt messages. We have always felt that
Jacob's purpose here reaches far beyond our family. We
have been happy to share him with all of you.

Jacob seemed a little more like himself today. He was awake
for quite a few hours and besides some occassional leg pain,
he seemed more alert. We are constantly striving to control
his pain and make him comfortable. We may be going to
Milwaukee for a consult with a pediatric palliative care
specialist to see if he can add to Jake's comfort.

As always, thank you for the prayers, notes, cards, calls,
meals and gifts. We are eternally grateful.
Love,
Natalie, Jerry and Jake

Saturday, November 16, 2002 at 10:07 PM (CST)

Jacob seems to grow weaker everyday. He has spurts of
energy and sparks of his "old self" come shining through
but those moments are few and far between. Most of his
day is spent in bed wanting Jerry and/or I close by to
cuddle with him. He continues to think of everyone else's
feelings. He is constantly trying to comfort us by putting
his arm around us or patting or backs or simply telling us
how much he loves us!! He keeps apologizing for "being
difficult," for which he is not, or for asking for
specific items to drink, or for everyone to stay quiet
when he is in pain. Imagine, he is apologizing to us!!
Our hearts break everytime he says "I'm sorry." If only
we could take away his pain.

Today is our wedding anniversary and in true Jake style,
he wanted to do something for us. I am updating this
website at Jake's request. He wanted me to leave the room,
because he and his Dad have something planned for me.
Just sharing the day with him was gift enough for us!!

We want you all to know that Jerry and I are holding up
just fine. We have come to accept that although we still
have HOPE, it is unlikely that Jacob will recover. We
are honored and blessed to be able to spend these days with
him. We will make the most of every one. God's plan
will be revealed in His time.

Jacob has not expressed a desire to go home. We may try
to arrange a pass to go home for a few hours, but only if
Jake wishes. We know he feels safe and comfortable here,
almost as if he knows this is where he belongs.
He made the comment yesterday that if he went home he would
feel bad because everyone else would be able to walk around
except him. We don't want him to feel like a spectator
in his own home, while life goes on around him. In the
days to come we will continue to listen closely to Jacob
and his wishes.

We would like to ask that visitors to the hospital be limited to family only. We want our time and energy to
spent on Jacob. We know how much all of you are praying
for us and that you love us and want to do whatever you can
to help and we appreciate that. We hope you can understand
and accept our position at this time.

We will continue to update this website. Please pray
for peace, strength and courage for all of us.

Love,
Natalie, Jerry and Jake

Thursday, November 14, 2002 at 06:47 PM (CST)

We know that you have all been anxious to hear how Jake
is doing. We voluntarily admitted him to the hospital
this past Monday to address the issue of his pain control.
It was becoming difficult to manage his pain at home with
as needed doses of Dilaudid. We started Jake on a continuous Morphine iv drip on Monday evening and his
pain is being much better controlled. He is getting 0.5mg
continous per hour with 0.6mg boluses available every
10 minutes if needed. Jake is able to push the PCA button
and it delivers the extra 0.6mg dose.

Jake still remains weak and quiet. It seems almost distant
at times. We long for the days when he would "talk our
ears off." He is still dealing with major constipation,
but refuses to take any meds for it. He is still on
an iv diuretic twice daily to relieve fluid, blood pressure
medication, Kytril for nauseau, Diflucan, iv fluids,
Sucralfate and Prilosec.

We have not seen much improvement in his condition except
pain relief. He is needing platelets every day now and
his ANC is an all time low of 64. The disease seems to
be out of control!! He completed radiation to his right
orbit and forehead yesterday and we have 4 days of radiation
left to his media sternum(trachea) area. He seems to be
tolerating that well. He is very moody and emotional from
the Morphine. He seems to be deteriorating before our eyes.
What a truly heartbreaking experience this is. We feel
so helpless. We know that this is in God's hands and only
He knows the greater plan for us all. We are cherishing
every moment with Jacob and we are still hoping that God
will grant us the miracle of healing our son.

Please know that we are touched by everyone's messages,
meals, support, cards and offers of help. As a result we
have been able to focus on Jacob and his needs only which
is exactly where we belong.
We will try to keep this website updated as much as possible.
Please continue to pray for Jacob.
Love,
Natalie, Jerry and Jake

Saturday, November 09, 2002 at 01:45 PM (CST)

To say that the past five days have been hectic is the
understatement of the year!! I have not had a spare minute
to update this web page and I know how much all of you
want to know how things are going.

I will try to recap the week. Jake is still very weak,
tired and continues to have pain. He is doing AWESOME with
his radiation treatments. They began radiating the tracheal
area on Wednesday and he will have 10 treatments providing
that he does not develop complications. His head radiation
treatments will end this coming Wednesday. Jake continues
to amaze the radiation oncology staff with his ability to
lie perfectly still. We are forever grateful to the
entire staff for making us and Jake feel so comfortable.
One of the radiation oncologists even surfed the web to
find out all that she could about the WWF so that she could
"relate" to Jake. She also heard Jake talking about a CD
by the group Creed and when she was shopping one day she
bought it for him and brought it to his treatments. The
whole staff is now "enjoying" the CD as Jake listens to it
during his brief radiation treatments.

Jake remains thin and gaunt. We can't believe how this disease has altered our son's appearance. It makes us even
more angry at the cancer. We just received Jake's Kindergarten school pictures the other day and we were
reminded of just how wonderful and healthy our dear son
looked only 8 weeks ago. I will try to post the school
picture when I have a moment to scan it. It is so hard
to comprehend how aggressive his disease must be growing.

Jake is still taking alot of meds, both oral and iv. He
finished his antibiotics last night. He continues to get
Dilaudid (narcotic) by iv every 1-2 hours, iv fluids overnight to keep him well hydrated, Labetalol, Prilosec,
Sucralfate, Senakot and Diflucan orally and we recently
added Kytril (anti-nausea) med by iv.

Gramma Dee has been staying with us since Tuesday afternoon.
She left this morning and she was a great help to us at home
as has Gramma Clarie. They have kept up with laundry,
changing linens, making the beds and keeping the house running in smooth order. Their help has been a godsend.
My only focus has been Jake's day to day care. He doesn't
like me to get too far from him.

We want to thank everyone for their continued prayers,
cards, meals, gifts, phone calls and emails. Please know
that we read and hear all of your messages and we are
blessed to have so many wonderful, caring friends.

I will update again soon!!
Our love,
Natalie, Jerry and Jake

Tuesday, November 05, 2002 at 03:25 PM (CST)

We wanted to let you know that Jake was discharged yesterday
from the hospital. We want to do a trial run at home
to see how we can handle is increasingly demanding care.
Jake still needs to come to the hospital every morning for
radiation therapy and clinic visits for transfusions.

We can't believe how quickly Jake seems to be deteriorating.
He has become so weak, thin and tired over the past two
weeks. He is spending most of his time sleeping. He is
not very intersted in eating or playing. He is not himself
at all. It is heartbreaking to watch. Jake has always been
so energetic and playful..even throughout this horrible illness.

We are still praying so hard that our miracle will come.
Thank you all for your phone calls, prayers, notes, meals,
and gifts. Please understand that we are not able to return
phone calls at this time. We are very busy caring for Jake,
but we are forever grateful for your help and concern.

It felt good to be home last night. It will take a few days
for me to get organized with Jake's medical care. He is
getting iv fluids through a small battery operated pump
overnight, he is getting his Cefepime and Vancomycin antibiotics by iv every 8 hours. I am giving him Dilaudid
through his line every 1-2 hours as needed for pain. He is
taking Senokot, Prilosec, Labetalol, Diflucan and Miralax
by mouth. We want to try to make this all work at home if
that is where Jake wants to be.

We did have the radiation consult yesterday to see if it
is prudent to radiate the lymph nodes at the base of Jake's
trachea. We feel that it is necessary for us to take the
gamble at this time. The radiation oncologists said that
they will be radiating a square area that will not involve
Jake's heart or lungs. Again, our hope is to slow down the
tumor growth in this area before it can cause any breathing
difficulties for Jake. They hope to be able to start that
radiation Wednesday or Thursday.

We are all "hanging in there." We need to make sure that
our family stays close and focused on what is best for Jacob. Right now, he just needs to know that we are here
for him.

Again, thank you for your prayers and concern. We are truly
comforted by them.
Love, Natalie

Sunday, November 03, 2002 at 04:10 PM (CST)

Hello everyone,
Jake is still in the hospital, but was able to come home for a few hours today on a pass. He is very weak and
tired and still requires pain meds every 2-3 hours.
We are asking for your prayers once again. The doctors have informed us that it seems that Jake is losing
his battle with Neuroblastoma. A chest ct scan done yesterday revealed that the three enlarged lymph nodes
noted on the October 17th scan have grown in size by about 1/2 to 1 cm in two weeks. If this growth trend
continues, within 4-6 weeks, the lymph nodes will be constricting Jake's trachea and he will have to struggle
to take a breath. The also found an area believed to be pneumonia located in the lower lobe of his left lung.
We are treating the pneumonia with two antibiotics and one anti fungal. Jake is in eminent danger from the
pneumonia if it were to worsen, because he doesn't have the white cells to fight it. He seems to be stable at
the moment.

So much information has been thrown our way in the past 48 hours that our heads are still spinning. We have
come to realize now more than ever that it truly will be a miracle of God that will heal our son. We are meeting
with the radiation oncologist tomorrow to find out if Jake can have radiation to the tracheal area without any
serious side effects. The doctors hope that the radiation will slow down the growth process. Again, nothing
curative is being offered, only the "lesser of evils." We were told that it would be extremely difficult for us to
observe Jake's passing if it was caused by him fighting to breathe. Although Jake would be made comfortable
and unaware by high doses of narcotics, we would have to watch him struggle.

We are still praying for our miracle. We know that God hears our prayers and those of all of you and we thank
you for your pleas on Jake's behalf.
We hope to bring Jake home tomorrow and effectively control his pain here, where he is most comfortable.
We will update as often as we can.

Thank you for your prayers.
Natalie, Jerry and Jake

Thursday, October 31, 2002 at 09:21 PM (CST)

The past two days have been very busy. Jake had his
radiation simulation yesterday and began radiation treatments today. As always, he did a great job. They
made a mask out of a mesh plastic that they warm and mold
to his face from his forehead down past his chin. This
mold allows them to make the markings for the radiation
laser beam on the mask instead of Jake's face. At first
Jake was a little unsure of the whole mask idea, but he
quickly realized that it looked COOL, like a WWF wrestling
mask. The mask needs to be put on and fastened down each
time he has a treatment. He will have one treatment a day
for ten days. We hope that the radiation will help to
alleviate the pain and pressure in his head. The radiation
beams will not penetrate the brain and they will bypass
his right eye and lens. He should not experience any
discomfort or side effects.

Jake's stomach seems better today. We have been giving him
Senokot (stool softener) twice a day and he finally had
a bowel movement today. Sorry, but it was a major event
for us....the first time since last Friday.
Jake still requires pain meds (iv Dilaudid) every 3-4 hours.
He is taking a very small amount (0.3mg) and it seems to
ease his discomfort. He began eating a little today.

One concern is still his fluid retention. He is getting
hydration through iv fluids and blood products, yet he
is not voiding an equal amount, so he will be getting
Lasix, a diuretic once a day. The doctor ordered a renal
ultrasound today to rule out any mechanical problems with
Jake's kidneys. The ultrasound showed no damage to either
kidney.

He is having a chest xray and ct of the abdomen because
he is complaining of pain on his left side and shoulder
when he breathes. Just one more thing to be nervous about.
It never seems to end!!

On a much brighter note, Jake wanted so badly to be able
to go trick or treating tonight. The doctor said that
we could have a pass for a few hours, so I took Jake home
and he changed into his costume (Spiderman) and we were
on our way. He was very weak and tired so I drove to a
few special houses and then we headed back home to meet
Jerry and go back to the hospital. Once again, Jake amazed
everyone. He has spent the entire week in bed, drowsy from
pain meds, yet he mustered up the energy to enjoy Halloween.
A true example of will and determination. We arrived back
to the hospital by 7:00pm and Jake needed desperately to
rest. He is getting platelets as I write this and sleeping.
Jake is so happy that Jerry is spending the night. Jerry
has been working from early a.m til late in the evening
everyday. This is his very busy time of year and I know
he feels so guilty not being able to be with Jake, so they
are both lying in bed just happy to be together.

Thanks to so many of you for your thoughtful messages, phone
calls, cards and especially your prayers. Jake has received
so many Halloween cards, gifts and candy. It is almost
like Christmas.

We are still keeping our faith and hope strong and we
have to believe that Jake will once again defy the odds
and make a complete recovery. We hope to be able to go
home later tomorrow. Please continue to pray for improvement in Jake's condition.

With love and thanks,
Natalie, Jerry and Jake

Tuesday, October 29, 2002 at 08:36 PM (CST)

Just a quick note to let everyone know that Jake was
admitted to St. Vincent's at 6:00 pm last night with a
fever. His fever started while he was getting a blood
transfusion in the clinic. To be safe, they admitted him
and began iv antibiotics (Cefepime). His fever came down
and has not gone above 99.0 since the middle of the night.
They drew blood and urine cultures and we need to wait
24 hours to see if there are any signs of an infection.

Jake is still sleeping ALOT. He is getting iv Dilaudid
for pain about every 6-7 hours. His stomach still hurts,
but the docs feel that it is due to constipation. We are
starting him on Senokot (a stool softener) tonight. He
still complains of headaches. We think that the tumor
on his forehead is growing and causing pain. The docs
also informed us today that there is a tumor on Jake's
right temple that his pushing down onto his right eyelid.
His right eye has been bruised and puffy for over a week.
We thought he banged into something and that it was a
typical boyhood "shiner." I guess we are finding out that
nothing is typical or simple anymore.

I know that we have pleaded for your prayers in the past,
but I am asking again for your prayers to help Jacob overcome this crisis. Please pray for his health to
improve and for him to regain his strength.

We are meeting with the radiation oncologists tomorrow to
discuss radiation treatments to the forehead and eye area.
This will be primarily to reduce the pain for Jacob, not
as a curative measure. The docs are hoping that Jacob
can go home by Thursday morning if the blood cultures are
negative.

More later.....
Natalie

Monday, October 28, 2002 at 01:03 PM (CST)

Jacob needs your prayers now more than ever. He has had
a terrible past few days. The pain in his leg has subsided,
but he is having alot of stomach pain and headaches that come and go. He has not been eating much at all and spends
most of his time sleeping(from the pain meds) or lying on
the couch. He hasn't been interested in playing with his
wrestlers, so we know something is not right. He had a
platelet transfusion on Saturday at the hospital and as I
write this journal, we are at the clinic getting platelets
and red blood cells.

Our hearts our breaking for Jacob. We feel so helpless!!
All we seem to be able to do is give him narcotics to ease
his pain. I know that there can be nothing more difficult
in this life than to watch your child suffer. He tries
so hard to pick himself up and be his "old self," but it
doesn't work. I have found myself having "heart to heart"
talks with Jake that I thought I would never have, but we
want Jake to know that it is up to him whether or not he
wants to keep fighting. Jake is the one that has to deal with the pain, the meds, the tests, and the treatments and
we can not fight for him if he doesn't want to fight for
himself. We hope and pray that he gets through this crisis
and we can find the reasons for his pain.

I don't mean to sound down, but the past two weeks have been
frustrating and emotionally exhausting for me. We know that
all of you want and need to know how Jake is doing, so we
are being honest with you. We continue to have hope and
faith that Jacob will ultimately beat this monster, but
at times our faith is tested.

Please remember Jake in your prayers and ask God to ease
his pain and suffering.
I will update again as soon as I have time.
With love and gratitude, Natalie Jerry and Jake

Friday, October 25, 2002 at 10:26 AM (CDT)

It has been a busy week medically for Jacob and I sorry that I haven't posted. Jake's pain continued to be
severe in his right leg, so we asked that an MRI be done. We had to go to the clinic Tuesday for platelets and
they scheduled the MRI for Tuesday afternoon. Jacob needed 3 iv doses of morphine while at the clinic for pain.
It was so difficult to see him suffering so much. We attempted to do the MRI, but Jake was too uncomfortable
even with the morphine to be able to lie still for the 90 minute scan. We decided that it would be best to attempt
the scan on Wednesday and have Jake sedated for the procedure so that he would not be uncomfortable.

Even in pain, Jake manages to think of others. He said, "Mom, I'm sorry I couldn't do the test." I can't believe
that he was worried about disappointing ME!! I reminded him that he never has to apologize for not being able
to do something because of this disease. He amazes me everyday. We were better able to control his pain
Tuesday evening and Jake got a good nights rest for once. Wednesday he could not have anything to eat or
drink because of the sedation and he handled that like a trooper. We had to check into the 10th floor of the hospital at 9:00 am and Jake was treated like a "star." All of the nurses were thrilled to see him and couldn't
believe how much his hair had grown since August. Tammy, one of his favorite nurses was there to take care
of him and Lisa, another favorite was his sedation nurse for the day. After some iv pain meds, Jake was more
relaxed and they sedated him around 10:30. We headed over to the MRI center and they were able to get great
pictures of Jake's legs from the hip joint down to the ankle.

They did not find any cancer, thank God. It seems that the culprit for all of this pain is blood built in Jake's right
fibula. This is the bone that runs from the ankle to the knee joint in the back of the leg. This is caused by
Jake's low platelet count and his inability to clot his blood like a normal person. He has always been an active
kid, and an injury that may cause slight bruising for you and I, can cause more serious problems for Jake. The
docs say that it should resolve itself in a couple of weeks and that keeping Jake's platelet count above 50,000
should help. So we are back to getting platelet transfusions every other day. His pain as already begun to get
better. He only requires a dose of oral Dilaudid every 6-8 hours instead of every 4.

It is so frustrating that his bone marrow disease is being so stubborn. His need for platelet and red cell transfusions is increasing, his white cell count is still low and his ANC has not reached 500 in over 4 weeks.
He has not been able to go to school because of the risk of infection and we need to be careful that he is not
exposed to ill people at home. All we seem to do lately is go to the clinic or the hospital. I wish Jake was
able to do more! It breaks our hearts that either because of pain or other restrictions, Jake hasn't been able to
be much of a "kid" for the past two weeks. Please pray that his condition improves and that he can attend
school next week. They are having a Halloween party on Thursday and Jake also wants to be able to Trick or
Treat. Simple things that so many take for granted!!

We were also informed that another precious child's life has been taken by this dreadful disease. Jonathan
Powell, 4 years old, died on October 19th in his mother's arms. We met the Powell's in New York in 2001.
Jonathan was a bright, beautiful little boy who loved to swim and play golf. Please remember his parents,
Tim and Melissa in your prayers. Heaven is lucky to have such a beautiful angel.

Love,
Natalie, Jerry and Jake

Sunday, October 20, 2002 at 03:51 PM (CDT)

Jacob needed a platelet and red blood cell transfusion yesterday. The clinic is closed on Saturdays
so I needed to take him to the hospital. It was strange to be back on the 10th floor after our
weeks spent there in ICU. The nursing staff was happy to see Jacob. We all commented on
how it seems so long ago that we were there. It has only been two months, but it seems like longer.
Jake was feeling pretty punky yesterday, but the blood perked him up. The only problem was
that it was 8:30 pm before we got back home and Jake's "second wind" lasted until 11:00pm.

He is still complaining of pain in his right leg...behind the knee and at the ankle. We are giving
him Dilaudid (a narcotic) twice a day. The pain seems unbearable for him at times. He has
not needed pain meds since we came home from the hospital in late August. We aren't sure
what the culprit is. It could be the intense marrow involvement causing "bone" pain or weakness
in his joints from all of the prior chemotherapy or maybe something as simple as growing pains.
No matter what the cause, it hurts so much to see him uncomfortable. But Jake doesn't let it stop
him!! He is still playing football in the living room and throwing the baseball with his Dad.

Jake's counts are still low. His white count is .5 and his ANC is 150. We are praying that he does
not contract an infection and get a fever that would place him in the hospital. He hated going there
yesterday just for the transfusion.
Jake is scheduled to start his next round of chemo on Friday 10/25. We will talking with the docs
this week to see if it makes sense to add an anti-angiogenesis med such as Thalidomide. These
group of drugs are not chemo agents. They work to decrease the blood supply to growing tumors,
therefore causing them to stop growing. We have to discuss whether or not Jake's liver can handle
the possible toxicity of the drug.

I am glad to see this week come to an end. It has been exhausting emotionally and physically.
I spent four days this past week with Jake either at the clinic or the hospital and it has been draining.
We have also learned that Hunter is quickly losing his battle with Neuroblastoma. He is in increaslingly
more pain and requiring more narcotics. Please continue to keep him and his family in your prayers.

Take care,
Natalie, Jerry and Jake

Friday, October 18, 2002 at 09:15 AM (CDT)

Hi everyone,
We know that you are all anxiosly awaiting results from Jake's latest scans and tests, so here goes!
First the CT scans; the head ct shows a dramatic decrease in the size of the tumor that was in the bone of
Jake's left temple. It is barely visible. There is an area between Jake's eyebrows where a lump has formed
and that area is more visible on the ct since the August scan. It is not in his brain, rather on the bone.
His abdominal ct shows that Jake's liver has dramatically improved from the prior ct in August. His liver is now
normal in size and one small lesion is barely visible. There are some enlarged lymph nodes both around the
base of his esophagus and one on his right side behind his liver. I guess these were somewhat enlarged in August, but they are larger now.

Jake's bone scan is clear!! The pain he has been having in his right leg is NOT due to any tumor in his bones.
It could be attributed to a number of things.....bone marrow disease, chemotherapy, medications. We hope that
it will improve with time.
Jake's bone marrow biopsies/aspirates were of no surprise to us. He continues to have almost complete disease
involvement. The left side biospy showed marrow packed with disease as did the right side. Jake's last bone
marrow tests were done in June and at that time the right side was packed, but the left side still had some "good"
cells visible. We are still hoping for that "magic bullet," that will once and for all alleviate the disease in his marrow. It's out there somewhere.

Overall, the concensus is that the liver and the temple area markedly improved and that the two lymph node
areas and the forehead have gotten larger.
We are thrilled with the news about Jake's liver. When you stop and think about how very sick he was only
two months ago and now to have his liver normal is nothing short of amazing. We know we still have a long way
to go, but we still have faith that he will be healed.

Thank you all for the special thoughts, prayers and messages this week. We feel your strength and love.
Have a great weekend.
Love, Natalie Jerry and Jake

Wednesday, October 16, 2002 at 10:17 AM (CDT)

Hi everyone,
I am sitting here writing this post as Jacob is in having
his bone marrow biopsies/aspirates done. I need to keep
my hands and mind busy!! Jake's been a trooper as usual.
He complained this morning about not being able to eat, but
that's nothing new!!
The doctor just came out and said the bone marrow procedure
went well. Jake is still sleeping off the Propofol (the
sleepy white medicine!) I am going in to sit with him
until he wakes up.
We won't have any results on the bone marrows until at least
tomorrow afternoon.
Jake's bone scan and ct scans are scheduled for tomorrow
morning, so we should have most of the results later tomorrow.
This is such a frustrating time. I feel so helpless and
"out of control." I sit and pray and hope and wait and there is nothing I can do about ANY of it!
We have to leave it all in God's hands.

We will update you as soon as we have results.
Thanks to all of you for your constant love and your
support, especially during this week.

Natalie, Jerry and Jake

Monday, October 14, 2002 at 07:18 PM (CDT)

Hi everyone,

Jacob had an uneventful weekend. The weather has quickly turned colder here so he spent most
of the time indoors playing with his brother Ben. They rented some videos (hold on to your seats,
no wrestling ones) and they played Nintendo.
Jacob was able to return to school today. His ANC is slightly below 500 which is a vast improvement
from last Friday. His platelet count was 45,000 today so we will be transfusing tomorrow. Jake
had a fun day at school. They had a fire drill today and the fire trucks even came. Jacob is
learning penmanship and the theme for this week is "All about Me."
The only complaint Jacob has is that his right leg has been hurting him since Saturday. He was
very active over the weekend and we hope it is a result of weak joints. Some children experience
leg pain due to the amount of prior chemotherapy. Of course, we are always NERVOUS because
we know there is still disease in his bone marrow and the hips and leg bones contain the most
marrow in the body. Please pray that Jacob will find relief from his pain.
This is a very stressful week for us. Jacob will have all of his testing done on Wednesday and Thursday. We
should have preliminary results by Friday. We don't know what to expect, but we hope and pray for the best
possible news. Jake's liver continues to remain the same size, but the ct scan will give us a better picture.
The bone scan will tell us if there is any disease in any of Jake's bones from his head to his toes and the bone
marrow aspirates and biopsies will tell us if the disease has lessened in his bone marrow. More than you
ever would want to know, but knowledge is power. We know that Jacob will be in all of your prayers over the
next few days. THANK YOU!!!!
Today Jacob received a package from the Vermont Teddy Bear Co. It is an adorable Teddy Bear dressed as
a gangster!! His tag says, "Who loves you Baby?" It is from our friend Jim Murphy and Jake was thrilled to
receive it. Thanks Jim, how thoughtful. Just wondering about the "gangster" theme...should my Italian relatives
be offended??? You better "watcha you step," we know where you live!!
As always, thank you all for the continued prayers, well wishes, love and support....keep them coming!!!!
We like to ask that you remember some special friends of Jacob's, Bryan, Hunter and Austin who are going through difficult times. We have faith that God will grant them the strength and courage they need.

Our heartfelt gratitude,
Natalie, Jerry and Jake

Friday, October 11, 2002 at 10:32 AM (CDT)

Dear friends and family,
I have had a difficult time accessing Jake's website to
update the journal, but FINALLY, here we are!!! Jake is
doing GREAT. His counts have been low this past week
(ANC below 200)which we are attributing to the last chemo
course. Thankfully, he continues to be free of fever.
We have kept him out of school for most of the week. We
are fast approaching the cold and flu season and we don't
want to risk Jake's health.

I doubt that I will remember all that Jake has been up to
since my last update. We picked out pumpkins, decorated
the house for Halloween, had a visit from Jake's cousins
Nick and Michael and of course a visit or two to Toy Works.
Jake's friend Jared from last year's preschool class came
over yesterday afternoon to play for a few hours. The boys
haven't seen each other for a couple of months and they
had a great time "hanging out." They played hockey in the
driveway, Nintendo and watched a wrestling video. Jared
joined us for dinner. It was a great time for Jake.
Thanks Jared!!!!!!

Today we are at the clinic getting a platelet and blood
transfusion. Jake's last platelet transfusion was Monday,
so we are down to two days a week at the clinic!! YIPPEE!!!
Jake is still doing a great job of taking his meds and
supplements. We are praying that we can help Jacob's body
do the work of killing the cancer cells.
We are so grateful to all of you for your continued prayers.
We are asking for some special prayers and positive thoughts
for next week. We have scheduled all of Jake's scans for
Wednesday and Thursday the 16th and 17th. He will be having
the full gammit. CT scans of the head, neck, chest, abdomen
and pelvis, a bone scan, bone marrow biopsies and aspirates.

We are praying that Jacob's disease burden has lessened since his scans in August. Please join us in asking God
to heal Jacob.
We hope all of you have a wonderful weekend.
Natalie, Jerry and Jake
****Thanks for all the encouraging guestbook messages.
We love them!!!*****************

Sunday, September 29, 2002 at 01:56 PM (CDT)

Hi everyone,

Wanted to let you know that I updated the photo album with some pictures of Jake from the
wedding....please take a look.

Also, I would like to ask all of you to keep a friend of Jake's named Austin in your prayers.
Austin is 24 years old and has recurrent neuroblastoma. We met Austin and his fiance Helen
in New York last year and they quickly became good friends to all of us. Austin is experiencing
alot of pain and they have found that the tumor in his spine is growing. Because of Austin's
age, they have very limited options available to them.

We know firsthand the great power of prayer and we would ask that you remember Austin in yours.
We hope that faith and prayer will give Austin and Helen the hope and strength they need to
continue treatment and continue praying for a miracle. We believe that Jake is living proof
that miracles do happen.

Thanks,
Natalie

Friday, September 27, 2002 at 01:17 PM (CDT)

Sorry that it has been so long since my last post.
As usual we have been very busy.
Friday night we went to Alex's homecoming football game. Jake was anxious to see Al play. The BayPort Pirates were playing DePere, another undefeated team. It promised to be an exciting game. Little did we know how exciting. Minutes before the first half ended, Alex returned a punt to about the 50 yard line where he was tackled hard and got a knee to the helmet. He layed motionless on the sideline for a minute or so and came to. The trainers helped him off of the field and it was obvious that Alex had been shaken up. They believe he suffered a mild concusion and did not finish the game. We were all very worried considering Alex's severe concusion in April during a baseball game.
Alex had a CT scan done on Tuesday and it was "clear." He
will not be able to play tonight, but hopes to return for
next week's game.
Jake is doing well...we are at the clinic getting a platelet and blood transfusion. Lately, he has only needed
two platelet transfusions per week. We had an MRI done
on Tuesday to determine what could be causing him to limp
and have stiffness in his legs. Thank God, the MRI showed
no tumors in the bone. They concluded that the discomfort
is condusive with marrow involvement and the use of GMCSF
to boost his white count. We will begin his second round
of the chemo Temazolomide tonight. Please pray that this
chemo continues to keep the disease in his liver under control and that it may have some effect on the cancer in
his bone marrow.
The wedding was wonderful last Saturday. Jake looked so
handsome in his suit....sooooooooooooo grown up.
He couldn't wait for the ceremony and his big moment.
He sped up the aisle and stood next to Aunt Terri nervously
holding the pillow. After the ceremony he quickly sped
back down the aisle. He couldn't wait for the dinner and
reception to begin. He ate lots of corn, chicken and potatoes and drank quite a few Sprites. He was enjoying
all of the attention.
He asked his old Mom to dance with him and we had a wonderful time "cutting a rug" on the dance floor. I was
so touched and honored to be dancing with such a handsome
young man. We hope to post pictures SOON.
Jake is enjoying kindergarten. He was the "helper" yesterday which meant he got to help with the calendar,
the daily news and be the classroom leader. Yesterday
was also picture day at school.

We hope all of you have a great weekend. Thank you for
your cards, gifts, encouraging words and your prayers.
Please continue to pray for Jacob's healing and our strength
to help him.
Love, Natalie Jerry and Jake

Thursday, September 19, 2002 at 08:02 PM (CDT)

Hi all,

Well, dare we jinx our good fortune?? Jake did not need a platelet transfusion today. He was at 99,000 today
so we will recheck tomorrow. It is soooooooooooo nice not to have to visit the clinic every other day. Please
pray that Jacob's counts continue to rise and stay stable so that he may enjoy more time away from the
clinic and hospital.
Our only concern at this time is his white count and ANC which are not rising as quickly as we would like.
Jake was not able to go to school today because his ANC was only 290. We are praying that Jake's body
will bounce back and his ANC will rise keeping him safe from infection and illness.
Gramma Dee and Granpa Russ are visiting today and they are spending the night. They wanted to come
on a Thursday so that they could watch wrestling with Jake to see what all the fuss is about!! They are in
for a real treat.
Well, we have BIG plans for this weekend. Jerry's sister Terri is getting married on Saturday and Jake has been
asked to be the ring bearer. Needless to say, he is taking his role very seriously. He is so excited. He happened
to remember that one of the characters from a Nick Jr. show, Little Bill, was asked to be a ring bearer in his
teacher's wedding. So, Jake informed us that he needs to wear a suit and tie for the wedding. Jake will be
wearing a navy blue suit with a white shirt and a print tie. He will look GREAT!! We are so thankful that Jake
is well enough to participate in the wedding.
Tomorrow will mark three weeks since Jake was discharged from the hospital. How far he has come! As I am
writing this journal he is in the family room playing football with Gramma Dee and running for touchdowns!
We continue to be amazed by Jacob's strength and courage. He lives each day to its fullest and takes nothing
for granted.
Please continue to pray for Jacob's healing and that God will continue to bless our family. Thank you all
for your love and support.
Have a great weekend.
Natalie, Jerry and Jake

Tuesday, September 17, 2002 at 02:58 PM (CDT)

Hi,
We are at the clinic getting platelets right now and Jake
is sound asleep. He did not need platelets yesterday which
was a first for him in a long time. His platelet count
yesterday was 102,000 which was great considering that he
was transfused on Saturday. We didn't know how to act.
I took Jake out for lunch after school yesterday to celebrate. We went to Pizza Hut for their lunch buffet
and Jake thought it was great to be able to choose whatever
he wanted to eat. He had pepperoni pizza, sausage pizza
and breadsticks!
Jake continues to feel good. His weight is now up to 41.5#
and he is beginning to fit in his clothes again. We are
still doing all of the daily meds and we will be starting
his second round of chemo (Temazolomide) on the 27th of
September. We began giving Jacob an herbal remedy yesterday
called Arteminisin (Wormwood) This Chinese root is used
primarily to treat Malaria, but it is being studied at the
University of Washington for its effectiveness against
cancer. It is shown responsiveness in breast cancer cells,
leukemia cells and even neuroblastoma cells. Jake takes
one 50 mg capsule once a day when he is not on chemo. Time
will tell if Jake gains any benefit from it. The good news
is that it has no side effects or toxicity, which is more
than we can say for all of his other treatments thus far.
Jake is still enjoying kindergarten. We may have to keep
him out for a few days until his ANC goes above 500. We
don't want to risk him getting a cold or infection of any
kind.

Please pray for Jacob's continued strength and overall
stable good health. We have not stopped praying for the
miracle that will heal him.

As always, we appreciate your kind thoughts, words and
prayers.
Love, Natalie Jerry and Jake

Monday, September 16, 2002 at 10:40 AM (CDT)

Hi everyone,
Another busy weekend has come to an end. I am entering this post while Jake is at school. I will try to recap
the weekend for you.
Friday was a GREAT day for Jake. He went to school and got to meet and play with his "school buddies." These
are second graders who will occassionally spend time with Jake's class. On Friday they played outside on the
playground equipment. Jake's legs are still stiff, so he limited himself but still had fun! After school, Uncle Mike
Decur came over and played wrestlers with Jake for a few hours. In the late afternoon Nick Vitrano (Jake's buddy
in the picture) came and spent the whole evening with us. They played Nintendo and wrestlers and then we
all went out for a fish dinner at Jake's favorite place..BS's. Jake ate walleye and french fries and had his usual
kiddie cocktail. Nick then accompanied us to Alex's football game in Pulaski. It was very crowded due to the
long standing rivalry between BayPort and Pulaski. Alex had a great game and Bay Port WON!! Jake was
excited to see Al after the game and high-five all the players as they came off of the field.
Ben also had a game earlier on Friday that we missed, but he had an interception and scored a touchdown.
Jake is so proud of both of his brothers.

We want to thank Nick for giving so much of himself and his time to spend with our family. Jake LOVES having
him around.
Saturday was a very cool and rainy day. Jake needed to go to the hospital for a platelet transfusion. We are still
trying to keep his platelets above 50,000. He continues to gain wait..he is now up to 40.5#, he still has a few
pounds to pack on. Ben came over on Saturday and he and Jake played all day....it is so great to have him here.
Even though he and Jake have their share of "brotherly" fights, they love each other very much.

I need to run and pick Jake up from school....More later.
Our love,
Natalie, Jerry and Jake

Thursday, September 12, 2002 at 02:30 PM (CDT)

Hi everyone,

I realized how much Jake has done since I last posted
and it explains why I haven't had a moment to sit and journal. Please know that Jake continues to do well....what
a miracle!! We are so thankful to God for giving Jake the
continued strength to battle this monster. He has been
attending school on a regular basis and loves music class
and gym. He is still eating well (two hot dogs and a soft
pretzel at the circus last night) His only complaint is of
some leg stiffness and pain. Unfortunately, there can many
causes/explanations for this so we may have to do further
testing to find out for sure. Please pray that his leg
pain and stiffness are due to the medications he is on and
the increased level of activity.

Since I last posted, Jake has been to a Packer game (last
Sunday), Toy Works (2 days in a row), his brother's football
games and the circus. Whew!! I'm tired. We are enjoying
every minute of it. The circus was AWESOME!! It was held
at the new Resch Convention Center in Green Bay and it
was the Ringling Bros. Barnum & Bailey circus. Jake was
so excited. He cheered and laughed and was amazed at the
many death defying feats, the clowns and all of the animals.
We arrived there about 45 minutes early and we were able
to go down on the main floor and watch the clowns perform
and see the elephants up close. Jake even got to touch
an elephant's trunk. Gramma Dee and Grandpa Russ came with
us and we all enjoyed the evening. Jerry had to work late,
but Jake filled him in on the whole evening when we got home.

Jake has been getting platelet transfusions every other day,
but we have been encouraged lately by his ability to hold
on to the platelets for longer. We are also encouraged by the fact that the lymph nodes in Jake's neck are dramatically smaller and by exam, the size of his liver has
decreased over the past week. We are certain that the power
of all of your prayers has helped. We are still praying that God will grant us the miracle of healing Jacob's body
and we ask that you continue to pray for him as well.

It sounds like we will have a busy weekend on tap. Friday
both Ben and Alex have football games. On Saturday we are
hoping to get updated portraits of the boys done at Pamperin
Park. It will be the annual picture of the three boys together and Jake's 5 year picture as well. We are hoping
for beautiful weather.

We wanted to again thank you all for the continued cards,
gifts, gifts of money, prayers and words of support. We
wanted to share with you some of the things Jake has purchased with your gifts of money. He went to Toys R Us
and bought a Thomas the Tank train engine named Douglas
and a bridge and viaduct for his wooden Thomas set. He couldn't wait to get home and set it up on the beautiful
wooden train table that his Uncle Dave made for him.
Thanks, Dave...the table is awesome. One problem, Jake has
too much Thomas stuff.
Jake went to Toy Works and bought two new wrestlers and some
wrestling gear. He loves to shop for toys and is especially
proud to using his "own money." Thank you all for your
generosity.

Our love and gratitude.
Natalie, Jerry and Jake

Friday, September 06, 2002 at 04:08 PM (CDT)

Hi to all,

Well, Jake completed his first week of school and he still
thinks it's awesome. He isn't thrilled about getting going
in the morning, but he told us that once he gets there he
"has a ball." He had his first gym class today and had fun
playing monkey see monkey do, musical stars and red light
green light. Despite his weakness, he did great. The gym
teacher told him to go at his own pace and do as much as
he felt comfortable with.

Jake is getting a platelet transfusion today which will hope
fully "beef" him up for the weekend. Yesterday we attended
Jake's brother Ben's first middle school football game.
Jake loves cheering from the stands for his brothers. Ben
had a couple of carries and a couple of tackles. Tonight
we are going to Alex's high school varsity football game
and Jake can't wait. Jake gets to carry his big brother's
football helmet off of the field. He loves walking off the
field with the "big kids." What a thrill!!! We are so
grateful that Jake is able to do so much. Just think, last
week this time he was still in the hospital. What an
amazing child he is. We thank God for giving him the
strength and good health to "live" life. Your prayers are
certainly helping.....don't stop now.

Wednesday after Jake and I returned from his clinic visit,
a trip to Toy Works and dinner at Perkins, we arrived home
and there was a strange car in our driveway. It was
our friends Kathy Toonen and Kay Klinter and they were driving a 2002 Jaquar convertible. They asked Jake and I
if we wanted to take it for a spin. It was a ride of a lifetime!!!! The top was down, the cd player was blasting
and Jake was scrunched in the small space behind the driver's seat while I drove. We had a blast. Another
"once in a lifetime" opportunity for us.
More later...Jake's ready to leave the clinic.
Happy Weekend
Natalie, Jerry and Jake

Wednesday, September 04, 2002 at 03:13 PM (CDT)

I am writing this entry as we are sitting at the clinic
while Jake gets a platelet and red cell transfusion. We
are putting together a "Butt-Ugly Martians" puzzle and Jake
is doing far better than his mom. Jake is feeling great.
He finished his last dose of oral chemo last night and Jerry
and I could not be prouder of how well he did with the entire 5 day course. For those of you who have been unfortunate enough to witness Jacob taking oral meds, you
know how much he despises them. He did an outstanding job
with the oral chemo along with all of the other meds he is
currently taking. We found that putting the chemo in a
teaspoon of applesauce does the trick. Jake will have a
21 day rest before starting the next 5 day cycle.
Please pray that this chemotherapy will have some effect
on stabilizing or lessening Jake's disease. We are looking
into other options for him, but they each have strict eligibility criteria that needs to be met.

Yesterday was Jacob's first day of Kindergarten and he had
an AWESOME day. He was nervous and excited. He woke up
and we ate breakfast and got him dressed in a new outfit
and his new tennis shoes. We took pictures at home and then
Jerry and I brought him to school. We videotaped Jake
walking into the school doors and then I walked him to his
class. His teacher, Mrs. Meyers was waiting with a cheerful
hello. Jake waved goodbye to me and I was on my way. I thought that it would be a more emotional day for me, but
I realized how happy I was for Jake that he is able to
participate in kindergarten. Jake asked if he could ride
the bus home from school. We said ok because we knew that
the teacher puts the children on the buses. Jerry went to
work and I waited at home for the bus to drop Jake off.
School is dismissed at 11:20 and I nervously, patiently
waited to see his bus come down the road. It FINALLY arrived at 12:30...I guess there were some first day delays.
Jake walked off of the bus with his school bag on his back
and he looked like he was 12 years old. Then it hit me!!!
He is growing up so quickly!! Jacob was smiling from ear
to ear and couldn't wait to tell us about his big day.
He LOVES kindergarten and he LOVES riding the bus. We are
so thankful that God has given Jacob the opportunity to
go to kindergarten and we pray that he can continue to attend.

Please pray for Jacob's continue strength and improvement in
his health. Also, continue to pray that God will grant us
the miracle of Jacob's healing.
Love, Natalie Jerry and Jake

Monday, September 02, 2002 at 10:38 PM (CDT)

EVERTHING'S FINE!!!
We can't believe how quickly the past four days have gone. JAKE IS HOME!!! We got home very, very late
Friday night and Jake couldn't wait to see his dog Hunter and spend a night at home. The weekend was very
busy with a strict medication schedule, daily trips to the hospital for blood pressure checks and labs and trying
to fit a little fun and relaxation in as well. Jake is doing well overall. His appetite is quickly returning to normal.
He is asking for food and lots of it....he has to have 3 or 4 items at each meal and eats about half of all of them,
but we are not complaining.

He takes alot of medication each day, morning, afternoon and bedtime. He is on Labetalol three times a day
for high blood pressure, Prilosec once a day for stomach acid, Lasix two times a day to relieve any fluid retention,
Sucralfate three times a day to coat his stomach, Rocephin once a day for his sinusitis, Kytril two times a day
for nausea, Vitamin K once a day for blood clotting factors and oral chemo Temozolomide once a day.
Needless to say, we are very busy. We are happy and proud to report that Jake is doing an awesome job
with all of his meds, especially the chemo. The chemo ends tomorrow night and then he has a 21 day rest.
We hope to be able to cut back on some of the other meds soon as well.

Jake is starting Kindergarten tomorrow and we are all excited and NERVOUS!! We shopped for new school
shoes at the Foot Locker today and Jake found the perfect pair. His school bag is all packed and ready and
Jerry and I will be taking him to school for 8:45 am. Jake says he would like to ride the bus, but with his
busy morning medication schedule, driving him to school affords us a little more time. We will let all of you
know how the first day goes. I have such mixed feelings about sending him off to school. On the one hand,
we feel blessed and fortunate that he is even able to attend at all, but on the other hand it is going to be
hard to see him walk away from us into that huge school. Thus begins another chapter in our son's life. We
are confident that Jake is up to the challenge.

We can't thank you all enough for your cards, calls, gifts, guestbook entries, visits, prayers, love and support
throughout Jake's hospital stay. The past three weeks have been very emotional and exhausting for us, but
your love and support helped to sustain us. We have witnessed firsthand the power of prayer and we hope that
you continue to pray for Jacob and continue to ask God to heal his body.
With love and gratitude,
Natalie, Jerry and Jake

Wednesday, August 28, 2002 at 11:58 PM (CDT)

Hi everyone,

Again, I apologize for the late journal update. Where to begin??? Sunday Jake was still not himself. His
blood pressure was unstable, he complained of headaches and slept most of the day. The doctors ordered
another head ct scan and they found a small tumor 1cm by 1.5cm located in the bone near Jake's left temple.
The tumor is not pressing on the optic nerve or compressing on any vessels that would cause problems, it just
gives us one more area to worry about. It is possible to radiate the spot, but we are going to begin oral
chemotherapy tomorrow and we will watch if the tumor there as well as in the liver respond favorably.
We will begin Jacob on a chemo agent called Temozolomide, commonly used in brain tumor patients. We
are also hoping to add to that an anti-angiogeneic drug called Thalimode. Both of these meds are oral and
are taken once a day for five days followed by 21 days off. They are both thought to be low risk to Jacob.
We are praying that this combination will have some affect on Jacob's disease burden and hopefully halt the
progression of this terrible monster.

Now for some GOOD NEWS!!! Jacob was moved out of ICU today and into IMICU (intermediate icu) He no
longer requires oxygen and only needs to have his blood pressure, pulse and heart rate monitored periodically.
His blood pressure has remained stable on the medication that he takes three times a day. His appetite is
slowly returning and his energy and activity levels have increased as well. He continues to work with Physical
and Occupational therapy on a daily basis. Yesterday was the first day he actually left the room for something
other than for radiation or scans. He rode in the wagon to the playroom and spent 2 hours playing there with
Gramma Dee and Gramma Clarie. Today was an even BETTER day for Jake. He played in the hallway
with the physical therapists, Peggy came and spent a half a day playing in the room with him and best of
all, we were able to LEAVE THE HOSPITAL on a four hour pass. Jacob was unhooked from all of his tubes
and monitors and we were able to take him to his Kindergarten open house at his new school, Forest Glen.
He was able to see his classroom and meet his teacher Mrs. Meyers. Although Jacob was weak and tired,
he couldn't wait to see his new school. It was his idea to go to the open house. He told me this morning that
it was important to him that he go to the open house. He starts kindergarten on Tuesday Sept 3rd and will
be attending class from 8:45 to 11:20 am Monday through Friday. Jerry and I have decided that we want him
to experience all that he can and have as "normal" a life as possible.

We had told Jacob that we would take him out for dinner tonight....his choice. Well, hold on to your seats folks!!
Jacob asked to go to "HOOTERS!!" We couldn't believe it. Not only that, but he had a list of people he wanted
us to invite along, so naturally we granted his wish. We made some phone calls and we were on our way.
Uncle Mike Decur, Uncle Mike Peot, Nick Vitrano, Aunt Cindy, Gramma Dee, Lisa W., Jerry, Jake and I
found ourselves sitting at Hooters for dinner. Jacob was so excited. He couldn't wait to eat "hot wings," and see
the Hooters girls. Nick plays softball for Hooters, so he made sure that Jake was given the royal treatment.
We want to thank Shaun the manager and all of the girls for making tonight a memorable evening for all of us.
They gave Jake a signed kids Hooters tee shirt, balloons and they gathered around him for several photos. We
captured the evening on videotape as well. Jacob had the time of his life. It was so great to see him smiling,
laughing and free from the hospital. It certainly was Jacob's night. Oh, I almost forgot. Jacob had one specific
request....all of the women who accompanied him, namely Gramma Dee, Lisa and good old Mom, had to sit
at a separate table from the "guys." I think he enjoyed that most of all.....I guess you can't have your Mom
fussing over you when you are sorrounded by Hooters girls.

We returned to hospital around 8pm and Jake was visibly tired. He took his meds and he and Dad were settling
into bed early. We are sure that Jake will be having sweet dreams. We are so thankful for this wonderful
day and the opportunity to share it with Jacob. We are hoping to be discharged on Friday. We are so anxious
to get Jacob home where he belongs. We promise to update all of you tomorrow.

We want to extend our heartfelt thanks to all of you for your cards, phone calls, gifts, meals and guestbook
messages. We are grateful for all that you have done to help us through this difficult time.
Love, Natalie Jerry and Jake

Saturday, August 24, 2002 at 09:39 PM (CDT)

Hi everyone,

Today was a difficult day for Jake. Has been having
some nausea believed to be caused by the blood pressure
medicine and the blood clotting medicine. He was sick
to his stomach a few times today so he was given Kytril
an anti-nausea med and Benadryl. He also complained of
headaches and dizziness from the high spikes in his
blood pressure throughout the day. He spent most of the
day sleeping. We had only one or two brief glimpses of
a smile. It made it a very difficult day for Jerry and I
as well. As we have been telling people, it is much easier
to fight for your child when your child is feeling well
and strong, but it becomes increasingly more difficult to
fight when you see them suffering.

Jake seems to have improved a bit this evening. He is sitting up in bed, drinking some water and juice and seems
a little more alert. We are changing his blood pressure
medicine since the current med has not kept his pressure
at a consistent level. We hope to also discontinue the
blood clotting med tomorrow so he may see some relief
from the nausea.

We finally were able to change the dressing on his central
line site and it looks great!! The oozing has stopped and
the bruising around the site is healing. We were able to
place a normal transparent central line dressing today.
Jake's platelet count is 112, his hemoglobin has remained
steady at 9.2 and is white count is 2.0.

We received the results of his abdominal ct scan today and
the ct confirms that the liver has dramatically decreased
in size as a result of the radiation. The lesions seen on
the original ct done on 8/6, have also decreased in size,
but are still visible. The radiation treatments were
given only to offer some relief to Jake from the enlarged
liver, not as a cure for the disease. Jake received the
maximum amount of "safe" radiation and can not receive anymore to the liver. We are in the process of discussing
our next treatment course with Dr. Brandt and we are also
hoping for input from various docs around the country.
We still hope to be able to go home soon!! Jake will more
than likely have to take blood pressure meds at home and
possibly the Pepcid and Prilose as well.

Please pray that we will find a treatment that will prolong
Jake's life for as long as possible. Please continue to
pray for Jake's strength to return so that he may be
released from the hospital and return to his normal life
at home. As always, we continue to ask God for the miracle
of healing our son.

Love, Natalie Jerry and Jake

Friday, August 23, 2002 at 07:19 PM (CDT)

Hi everyone,
Today was Jake's last day of radiation treatments. We
want to thank Jackie, Erin, Ed, Dr. Pam and Dr. Gessmer
for their wonderful care. They made each session enjoyable
for all of us. They were so impressed with how still
Jake stayed for each treatment. We took some pictures
that I hope to add to the website soon.

Jake also had a CT scan of his liver today. We are waiting
to hear the results. Please pray that the radiation has
been successful in destroying the Neuroblastoma cells in
Jake's liver.

Jake continues to improve daily. His central line site
has finally stopped bleeding. His hemoglobin, platelets
and liver function continue to be normal and stable. He
is still on oxygen (down to a 1/2 liter) and he began working with the physical therapists yesterday. He has
spent 2 weeks lying in bed and we want to ensure that
he regains the strength in his arms and legs.

We want to take a moment to acknowledge and thank some very
special friends who have made the past two weeks a little
more bearable for us. Kris and Kevin Kerwin (Cameron's mom
and dad) spent 4 nights in Green Bay. They stayed at our
home and Kris was with me at the hospital everyday. Her
company and emotional support meant so much to us. They
know firsthand what life is like with a child with cancer.
We marvel at their strength and courage. We will never be
able to adequately thank them for all that they have done
for us. We love you guys!!!!
Nick Vitrano has been to visit Jake almost everyday since
he was admitted. Nick is 24 year old young man who never
fails to make us laugh and loves spending time watching
wrestling videos with Jake, playing checkers, playing with
wrestlers or just being here while Jake sleeps. He has
become like part of the family and we thank him from the
bottom of our hearts.

Kay Klinter and Kathy Toonen (the clown squad) as they
have affectionately become known have spent many hours with
us at the hospital. They have brought meals, toys for Jake,
adult beverages for Jerry and I and most of all their love
and support. Oh, and I almost forgot the remote control
fart machine. It has brought hours of joy and laughter to
us all. You're both the BEST!!!

To our wonderful families, Gramma Clarie, Grandpa Jerry,
Gramma Dee, Grandpa Russ and all of Jake's aunts, uncles,
cousins and extended family and friends, your prayers,
company, love and support have carried us through the most
difficult days of Jake's hospitalization. We know that even
when you are not here in the flesh your hearts are with us.
We believe that God has given us a great opportunity to
be loved by so many wonderful people.

Ines, Lisa and Chuck, thank you for your calming presence and your love for Jacob. God has blessed each of you with
wonderful gifts that you use lovingly and with pure hearts.

Thank you all for the continued guestbook messages. Please
know that we read them each and everyday and have drawn
strength and inspiration from them.
Please pray that Jake continues to improve and to gain his
strength. Also, that God may bless us with the miracle of
Jake's healing as only he can do.

Our hearfelt love and gratitude,
Natalie, Jerry and Jake

Thursday, August 22, 2002 at 02:50 PM (CDT)

Hi everyone,
Well, here's the latest. Jacob's new central line site
seems to be bleeding less. His hemoglobin is once again
stable and he is receiving platelet transfusions once
every 24 hours. He has one remaining radiation treatment
left and continues to tolerate them very well. The main
issues we have are his elevated blood pressure which is
being controlled by an iv medication and trying to get him
to eat. He has not had much of an appetite since he had
the stomach bleeding. He is being given Zofran for nausea
and we are encouraging him to try eating even if it is little bites.

He is still getting Pepcid, Prilosec and an oral med to
coat his stomach. He is still in the ICU and we hope to
be able to move to the regular Peds floor soon. Of course,
we are anxious to get home. We know that Jake always does
well at home. We are praying that he returns to his old
self soon. We miss the Jake that makes us laugh and is so
full of life.

Please continue to pray that God give Jake the strength that
he needs to heal his body. We are still praying for our
miracle.
Love, Natalie Jerry and Jake

Tuesday, August 20, 2002 at 08:29 PM (CDT)

Hi everyone,
Well, it has been a busy, hectic couple of days at the
hospital. Jacob's central line began leaking on Sunday
afternoon, so we made the decision to once and for all have
it removed and replaced by a double lumen Hickman catheter
like he had when he was first diagnosed. The surgery was
scheduled for 1:00 on Monday and Jacob once again came
through with flying colors. Of course, he was very upset
that he could not eat or drink Monday morning. He had just
began to get his appetite back after Friday's endoscopy
procedure.

Jake returned to his room Monday afternoon and we noticed that
the new central line site was oozing blood. Although it
is normal to have some bleeding at the site, Jake's was
constant and showed no signs of ending. We had asked the
docs to take a look at it and they felt that the bleeding
could be due to Jake's previous problems with clotting
and coagulating blood. They advised us to apply a pressure
bandage in hopes that the bleeding would subside.
Well, 24 hours and 6 dressing changes later, the site was
still bleeding. Blood was soaking through the bandages on
his chest and his pillow, sheets and bed pad were bloody.
His hemoglobin dropped from 11.6 to 8.9 in less than 24
hours. We insisted that the surgeon come to look at it.
At 4:30 pm this afternoon, the surgeon came in and realized
that this bleeding was very unusual. They took Jake back
to the OR at 5:00 pm tonight and re stitched the area and
applied additional pressure. He was back in the room by
6:00 pm and he looks like a new kid. He is awake and pain
free. We hope and pray that this are last setback. We
are so proud of our son and what he has sustained over the
past 11 days. He has not complained nor has he given up!!

His radiation treatments continue to go well and the liver
has visibly shrunk. The radiologist oncologist and Dr.
Brandt are very pleased. Jake is trying to enjoy his hospital stay as best he can. We have had many wonderful
visitors who have brought a smile to his face and of course
all of the presents don't hurt either. Jerry and I
greatly appreciate everyone's love, support and continued
prayers. We are more determined than ever to continue
to fight this horrible disease. Please keep Jacob in your
prayers.
Love,
Natalie, Jerry and Jake

Sunday, August 18, 2002 at 06:32 PM (CDT)

Hi everyone,
Sorry for the delay with this update. Jacob is doing
well. His condition continues to improve. We finally
found the source of Jacob's bleeding. The doctors recommended that we do an endoscopy procedure to see if
anything would show in Jake's upper GI tract that would
account for his bleeding. Jake was brought to the OR at
1:30pm on Friday. He was sedated and the entire procedure
took 45 minutes. Fortunately they found a "bleeder" in
Jake's stomach and they were able to cauterize it immediately. They also checked his esophagus, stomach
and upper portion of his small intestine and everything
looked fine. He was back up to his room and starting
to wake up by 2:30pm.

Since the procedure his abdominal pain has lessened, he
has had no more black stools and his hemoglobin has
remained stable since Friday afternoon. Jake is almost
back to his "old self." He is asking for food and is
beginning to regain his appetite. We are still dealing
with the cancer in his liver, but he is in much better
condition since everything began on Saturday night.

We still have to deal with the neuroblastoma in his liver,
but we are beginning to see positive effects from the
radiation treatments. Jake will resume radiation tomorrow
and continue daily through Friday. His liver has shrunken
in size and his liver function has almost returned to
normal.

We are aware and thankful to all of you for your prayers.
The healing power of prayer is evident in our lives today.
We remain hopeful and positive that Jacob will continue
to fight the neuroblastoma in his liver and his bone marrow.
We hope to be able to update on a daily basis because we
know how concerned all of you are.
Please know that Jerry, Jake and I have continue to be
strong.
We want to thank everyone for their kindness throughout this
past week. Your cards, phone calls, visits and meals remind
us that we are loved and not alone. We will never be able
to adequately thank you for your generosity.
Please keep Jacob in your prayers and thank God for his
healing.
Love and thanks,
Natalie, Jerry and Jake

Thursday, August 15, 2002 at 12:32 PM (CDT)

Hello dear family and friends,
We are sorry to have waited so long to update the journal.
Jake's condition is stable at this time. He is still in
the Pediatric ICU and is being monitored very closely.
He is continuing to receive platelets, hemoglobin, fresh
frozen plasma, cefepime (antibiotic), Prilosec, Maalox,
GMSCF(to boost white cell production) and Epogen (to boost
red cell and platelet production) on a daily basis.

He spends about half of the day sleeping due to the Benadryl
that is given before each blood product is infused. He goes
to radiation daily at 1:00pm and continues to do an awesome
job of lying perfectly still for his treatments. The radiation and nursing staff here are amazed at how well he
does for only being 5 years old. Jerry and I continue
to be amazed and proud of his strength and courage.

He seems to liven up in the evening hours and then he wants
to make up for time lost. He played nerf basketball until
almost 10:30pm last night. His abdominal pain is being
controlled with the narcotic Dilaudid and he is receiving
0.1mg every 6-8 hours as needed. He told us that he loves
how it makes him feel and that sometimes he his "fooling"
the nurses by saying that he has pain because he really
likes the pain medicine. Thank goodness that Mom and Dad
are on to him!!

We want to thank everyone for the cards, gifts, phone calls,
visits, meals and most of all for the out pouring of love,
prayers and support that we have received over the past
6 days. God has truly blessed us with wonderful friends
and family. We would be lost without you. Please never
think that you are imposing or bothering us at all.
Please continue to pray for Jacob's recovery and that the
radiation will be effective against the cancer in his liver.
Jerry, Jacob and I are NOT GIVING UP!! We will continue
to fight this battle. We will update you soon.
Love and gratitude,
Natalie, Jerry and Jake

Sunday, August 11, 2002 at 09:22 PM (CDT)

We are sorry for the delay in this journal entry, but the last three days have been very difficult ones for us.
We desperately need your prayers for Jacob. He was admitted to the hospital on Friday afternoon after
complaining of stomach pain and feeling very tired and lethargic on Thursday. His hemoglobin dropped to 5.5
by Friday morning so he needed a red cell and platelet transfusion. After the transfusions, he was back to his
old self, but his liver enzymes and PT and PTT levels were elevated. Doctor Brandt wanted him admitted to
see if he stabilized over the next 12-24 hours. Jake was fine Friday night into Saturday afternoon. Saturday
evening around 6pm he began to have labored breathing and abdominal pain. His breathing worsened so he
was given 2mg of morphine and the doctors reassessed his condition. His liver had become enlarged over the
past couple of days as well and the doctors fear that Jake's neuroblastoma is rapidly growing in his liver causing
him discomfort. They also feel that Jake is oozing blood somewhere in his stomach or intenstine due to the
presence of black stools. They are continuing to give him red cell, platelet and plasma transfusions to help
clot his blood and hopefully stop whatever internal bleeding may be occuring.

Fortunately, Jacob's breathing and heartrate stabilized late last night after receiving lasiks ( a diuretic). He had
build up fluid in his chest because of all of the blood transfusions and iv fluids he had received over the past
few days. He has continued to improve over the past 12 hours, but the doctors are offering little hope that
Jacob's cancer can be controlled at this time. They feel that the tumor cells in his liver will continue to rapidly
grow until his liver function completely shuts down. They offered palliative radiation to the liver as an option
to hopefully help the tumor cells to stop growing and possibly decrease the size of his liver. We decided to
proceed with the radiation and they gave him his first treatment today. Jacob was a trooper as always. He slept
through most of the treatment. He was sitting up in bed today and awake most of the time. He required only
one additional dose of morphine since last night, so his pain is minimal. He played PlayStation with his brothers
today and played wrestlers with Gramma Clarie.

Jerry and I are still praying for a miracle to save our precious son. We know that we are fighting a horrible monster, but Jake has told us that he won't give up and he wants to keep fighting. We are still looking for
treatment options that he may be able to participate in once his condition continue to remain stable. Please
continue to pray for Jacob's recovery and for our strength and courage.

We love all of you. We will update you soon!!
Natalie, Jerry and Jake

Jacob is at St. Vincent's Hospital 835 S. Van Buren St. Green Bay, WI 54307

Wednesday, August 07, 2002 at 10:34 PM (CDT)

Hi everyone,

Jake had his scans done on Tuesday and the bone scan came back "clear" as did the ct scan of the head,
chest and pelvis. The ct of the abdomen unfortunately showed 4 small lesions on Jake's liver thought to be
Neuroblastoma. The doctors feel that with his increased liver enzymes and urine catecholamines it is logical that
the disease has spread to Jacob's liver. Again, we are faced with a difficult decision. There are still options
available to us depending on the amount of risk we are willing to take. Jake still wants to "fight." He told us
yesterday that he is not going to give up!! We are talking with doctors from around the country trying to gather
all of the information that we can to make the right choice for Jacob.

Jake continues to feel fine. As a matter of fact, his blood counts were great today. His platelet count was
52,000!! We don't have to check counts again until Friday. We could actually get away with only going to the
clinic twice this week.
Jake, Jerry and Ben stayed overnight at the camper in Oconto last night. It was good for the three of them to
spend some quality "guy" time together. It was good for me to be alone last night so that I could digest
the scan results and begin the search for a treatment. We are staying strong for ourselves as well as for Jacob.
He knows that his cancer is in his liver as well as his bone marrow and all he wanted to know was where is
liver was so that he would know where to fight the cancer. He is truly amazing.

Today Jake played hockey in the driveway and he played baseball with Gramma Clarie. We are hoping to camping
for a few days this weekend. We need to get away.

Please continue to remember Jacob in your prayers, that he may stay strong and that God will guide Jerry
and I down the right path.
Our love and gratitude,
Natalie Jerry and Jake

Monday, August 05, 2002 at 05:05 PM (CDT)

Hi everyone,

Well, we are continuing to spend alot of time at the Clinic. Jake needed a platelet transfusion on Friday and
he needed platelets and red blood cells today. We are becoming increasingly concerned about his inability
to hold on to platelets or to make his own after he is transfused. The doctors drew another HLA sample today
to send to Madison for testing. It is still possible that Jake's body is making antibodies against the platelets
and therefore "eating" them up as fast as they are transfused.
We also got the results from Jake's latest urine catecholamine test and they are not what we had hoped.
His VMA has risen to 98.3 from 42 in June and his HVA has risen to 70 from 48 in June. We are assuming
that this indicates an increase in disease. We are having a bone scan and head, chest, abdomen and pelvic
ct scans done tomorrow. Our prayer is that there are no new tumor areas.

Jake's liver enzymes and PT and PTT levels continue to be elevated which can contribute to his constant
need for platelets.
For some good news, Jake lost his second tooth last night...of course, with low platelets and less than perfect
coagulation factors you can imagine how much his mouth bled. Jake anxiously awaited the arrival of the tooth
fairy and was happy to find money under his pillow this morning.

We know that Jake has always been in your thoughts and prayers, but we especially need them now. We
are running out of treatment options for Jake. Please know that he continues to feel great. He was a little
tired today because of low hemoglobin, but otherwise he has no complaints. He spent yesterday swimming,
playing baseball and practicing his "Spiderman" moves off of the couch.
His appetite remains good and he has no pain or discomfort. We are thankful that he has remained his "old"
self.
Thank you for continuing to remember Jake in your prayers. We will update on the tomorrows test results.
Love, Natalie Jerry and Jake

Thursday, August 01, 2002 at 10:24 PM (CDT)

Hi everyone,
Time once again to catch you up on the past few days activities. Jake spent a few hours with
Peggy Warwick on Wednesday. He and her son Ben went to Family Video to rent a couple of
movies and they also played with Jake's toy skateboards, dirt bikes and ramps and jumps.
Jake always enjoys the time he spends with the Warwick family. We went to thank them for
their gift of time. In the evening, Jake, Gramma Clarie and Grandpa Jerry went to Oconto to
spend the night at the camper. They went out for ice cream and then settle in at the camper
and watched a video. I was able to spend a few hours last night with my friend Jill. She "forced"
me to go out for a very enjoyable, relaxing dinner. It was a nice treat for me.

Jake and Gramma spent the whole day today at the campground. It was terribly hot here today,
but they still managed to play in the sand box and play baseball. The took a trip to the Dollar
Store where Jake bought a GI doll and another wrestler. Jerry and Grandpa went to the camper
to have lunch with Jake since they were working at our farm about 5 miles away. I didn't get to
see Jake until 7 pm tonight. It was so strange not seeing him for 24 hours. He gave me a HUGE
hug and told me how happy he was to be home, even though he had a great time camping.

Jake developed a small red bump at the point where his central line catheter enters his chest.
He has never had anything like this before. The doctor wanted it to be cultured to check for
bacterial growth. The swab the area and send it off to the lab. The results came back today
showing moderated growth of a bacteria called stenotrophomonas ( a common skin bacteria )
and abundant growth of diptheroids. I guess these are common bacterias that Jake has reacted
to. The doctor prescribed an oral antibiotic called Bactrim which Jacob has had in the past.
He needs to take it twice a day for 10 days and all should return to normal. He feels fine except
for some tenderness at the site area. Jake's blood counts and liver enzymes will be checked
tomorrow. We are hoping as always, to finally see some stabilizing of his platelets.

Thank you for remembering Jacob and all of the other brave children who are battling this horrible
disease. We are thankful for your thoughts and prayers.
Love, Natalie Jerry and Jake

Tuesday, July 30, 2002 at 12:08 AM (CDT)

Hi all,

Once again the days have slipped passed me without updating the website. Jake is doing well. We have been
busy trying to sneak some summer fun in between all of the clinic visits. I will try to catch you up on things.

Friday...Jake and I spent all day at the clinic. He needed both platelets and pac cells. He didn't fall asleep with
the Benadryl, so that meant he was CRANKY!! We left the clinic and drove to Oconto (about 30 miles north)
to visit Gramma and Grandpa Peters at their campsite. We went to dinner with them to celebrate Grandpa
Jerry's birthday (July 27th). Jake was in a much better mood by then. He and I had stopped to pick up a
card for Grandpa on our way, and Jake insisted that he wanted to buy a card for his dad. He said is was
a "just because" card. Jake searched for the perfect card and he found it. The card talked about it not being
your birthday or any special occasion, but just to let you know that your are someone special and that you
are loved all the time. Jake couldn't wait to present the card to his dad at dinner. Needless to say there wasn't
a dry eye at the table. Jerry was so touched and Jake was so proud of himself.

Saturday....Jake and I went back to the campground to hang out. The weather was beautiful and Jerry was busy
working so we decided to get away again. Jake road his bike over the speed bumps, played baseball with
Grandma and played miniature golf with his cousin Bobbi and her boyfriend Adam. I was able to sit and catch
up on my reading. It was a very relaxing day. Jerry and I decided to book the campsite for Sunday and Monday
night so that we could spend some time away from home with Jake. We have tried several times this summer
to get away, but between Jerry's work and Jake's frequent clinic visits we can't venture too far from home. The
campground in Oconto is perfect.

Sunday... Jake and I waited for Jerry to finish his field work and feeding the cows. Gramma Clarie and I took Jake
to the local Pamida store to buy him a fishing pole because our campsite is right on the river. I confess, that
this is not my forte. We also went to bait shop so that I could buy my son nightcrawlers!! Oh, it get's worse!
Jerry was late getting back to the campground and Jake was anxious to try out his new rod, so Gramma Clarie
and I made a feeble attempt to thread the line on the rod, add a sinker, bobber and hook. We got Jake settled
on a rock to fish and then the moment of truth. I had to break off a piece of a nightcrawler and put it on his hook.
Now those of you who know me well know that I was raised somewhat of a "city girl." You can imagine my
horror when I realized that I was actually touching a moving, slimey piece of a worm. The depths of a Mother's
love!! Jake proceeded to cast his line and get it hooked on a rock. All for naught.

Monday.. Jake and Jerry are staying at the camper alone tonight!! Their version of "boys night out." The three
of us had dinner together and then I headed home so that their night of fun could begin. They were going out
for ice cream, going to our farm to see the cows and then going back to the camper to cuddle up and watch
wrestling. Jake was thrilled at the idea of spending time alone with dad.

Jake will have his blood counts checked again tomorrow. We are hoping that his platelet count is stable and
this his liver enzymes have decreased as well. Jake is thrilled to have some time off from the "yucky" pudding
medicine.
We hope all is well with all of you. Thank you for remembering Jake in your thoughts and prayers.
Natalie, Jerry and Jake

Wednesday, July 24, 2002 at 11:39 PM (CDT)

Hi everyone,

Things are beginning to return to normal at the Peters' household. Jerry is feeling 100% better today. He was
even able to work most of the day. It is great to have him back to his old self. Jake is doing great as well.
The nosebleeds continued last night and through this morning, so I brought him to the clinic so that they could
draw a blood test to check Jake's PT and PTT levels. These levels are affected by the liver and they aid in the
coagulation of the blood. Jake's levels were high, therefore explaining the continuing nosebleeds. The doctor
prescribed Vitamin K to be taken once a day for three days and a topical med called Thrombin that we swab
inside Jake's nostrils to control the bleeding. Both meds are doing the trick. Jake has not had a bloody nose
since we returned from the clinic late this afternoon. We also checked his liver enzymes and they have dropped
since Monday. This is good news. Jake's liver is tolerating the Fenretinide well. Today was the last day of
Fenretinide. Tomorrow begins our two weeks off. We are so proud of how well Jake has been taking the
yucky pudding!! Let's just pray that it is working.

Ben spent the night last night so that he could babysit Jake this morning while I was off to the hospital for my
morning of tests. I don't have the results yet, but I am sure that all is fine with me. Even though I had a
mammogram, gall bladder ultrasound and a complete blood work up, it all seemed anti climatic compared to
all that Jake endures on a daily basis. Ben, Jake and I went to Pizza Hut for dinner tonight after we picked
up our new television at Circuit City. Jake loves the breadsticks at Pizza Hut and I love not having to cook
on hectic days such as today.

Jake will be spending the day with Peggy tomorrow. It has been awhile since the two of them have had a "play
day." Jake is looking forward to it. We will be back in the clinic Friday afternoon to recheck Jake's liver enzymes,
platelets and his PT and PTT levels. Please pray that all continues to be well.
Thank you for remembering Jacob in your thoughts and prayers and also those children battling neuroblastoma.
Especially, Hunter, Chris, Austin, Bryan, Jonathan, Michael L, Kimme, Theo.
Love, Natalie Jerry and Jake

Monday, July 22, 2002 at 04:46 PM (CDT)

Hi everyone,
Well, today was a crazy day for the Peters' family. Jake's bloody nose episodes had become more frequent
and more severe through the night so we decided to rush him to the clinic first thing this morning for a platelet
transfusion. His platelet count was down to 12,000. He also had a low hemoglobin (6.6) so they gave him pac
cells as well. He was not thrilled that I woke him up early, but he knew he needed to go to the clinic. Jerry
has been feeling ill since last Thursday and he finally decided to visit the doctor this morning. He has a sinus
infection and bronchitis. He has been feeling miserable. I had my annual physical scheduled for today, so
Gramma Clarie relieved me at the clinic so I could keep my appointment. I seem to be the healthiest one in
the family for right now. I am scheduled for my first mammogram, a gall bladder ultrasound and a complete
blood work up on Wednesday.
Jake told me today that "girls don't get sick, only boys do and that it's the girl's job to take care of them."
He is too young to already know the ways of the world. I hope I still have time to teach him otherwise!!!
Jake has been doing a GREAT job taking his Fenretinide. He will be finished with this cycle on Wednesday and
he can hardly wait for the special present he gets for taking all of the doses like a CHAMP.
I hope to update the website this week with some new photos....Jake's hair is growing so fast. I will post when
I have them done.
Please continue to keep Jacob in your prayers. We will be testing his urine levels at the end of the week and
we pray that the HVA and VMA levels continue to decrease.
As always, thanks for checking in.
Love, Natalie Jerry and Jake

Sunday, July 21, 2002 at 02:56 PM (CDT)

Hi everyone,

Jake had an enjoyable weekend at home. My cousin Nick and his girlfriend Mary came to spend the weekend
with us from Chicago. We cooked a fish fry on Friday night...Jake's favorite and on Saturday we relaxed by
the pool. Mary and Nick played ALOT of baseball with Jake and Ben and the boys really enjoyed it. They
all went to Uncle Sam's Fireworks store to load up on some fireworks for last night. We made a bonfire after
dinner and shot off fireworks. It was a beautiful evening weather wise and we enjoyed the "fireworks" show.

Jake has been doing a great job taking his Fenretinide since Thursday. He is getting very cranky and crabby.
He has also been having nosebleeds for the past couple of days. I am sure that he will be in for a platelet
transfusion tomorrow. We are trying to keep his activities to a minimum, but that continues to be a difficult
feat with Jake.

I wanted to let everyone know that my email address has changed....please note that it is now ndpeters@hotmail.com

We hope you all had a wonderful weekend. Please continue to keep Jacob in your prayers.
Love, Natalie Jerry and Jake

Thursday, July 18, 2002 at 08:38 AM (CDT)

Just a quick note to let you all know that Jake's liver enzymes have returned to normal. He will begin his
second cycle of the Fenretinide drug today. He also needed a platelet tranfusion yesterday....all seems well
today.
As always, thanks for checking in.
Natalie

Wednesday, July 17, 2002 at 01:50 PM (CDT)

Today marks the 2 year anniversary of Jacob's Neuroblastoma
diagnosis. Do they make a cake for that???? Sometimes it
seems like only yesterday that Jerry and I were sitting in
Dr. Brandt's office trying to absorb the fact that our son
had cancer. At other times it feels like "forever" that we
have been battling this aweful disease. We have learned
so much along the way....about cancer, our son and ourselves. We have been fortunate enough to meet exceptional doctors, nurses and social workers who have made
our load a little lighter. We have seen firsthand that people are kind, generous and caring. We are surrounded by a loving family and a network of friends that
have been there for us every step of the way. We have also
been showered with generosity and kindness from complete
strangers. People who have touched our lives in ways that
they may never realize.
We know that each day we have with Jake is a GIFT that we must enjoy. It sounds strange, but we have been blessed with alot of joy, laughter and wonderful memories as a result of this dreadful disease. Our lives have been forever touched by the courageous children who continue to battle Neuroblastoma and those who are safe in God's arms.
Words can not express how proud we are of Jacob. Everyday he inspires us with his strength, grace and determination. His love for life is contagious and our days
are ALWAYS filled with laughter. He has taught us to be
humble and to truly live "One day at a time." We thank God everyday for blessing us with the opportunity to the parents of such a remarkable child. Jacob has taught so many so much. He touches the lives of everyone he meets and
we are all better people for knowing him.
We couldn't let this day pass without sharing these thoughts and feelings with you. All of you have come to mean so much in our daily lives. Thank you for your love,
prayers and support and for making a difference in our lives.
With our heartfelt love and gratitude,
Natalie, Jerry and Jake

Tuesday, July 16, 2002 at 06:16 PM (CDT)

Hi everyone,
I'm am sorry that so many days lapse between journal entries. Please know that everything is fine
it is just becoming more difficult for me to journal everyday. We are trying to enjoy the summer
and with me and Jerry both busy at work, the days are flying by.
Jake was unable to begin his 2nd round of Fenretinide yesterday due to elevated liver enzymes.
This is a reaction to the med and we need to wait for the levels to return to normal before proceeding.
Because this is an experimental drug, there are strict parameters that must be met. The patient's
liver enzymes (SGOT, GPT and Alk Phos) can only be two times the normal range. So we just
have to wait until they test his blood tomorrow to see if we can begin. It is very frustrating to
stand by and do nothing to fight Jake's disease, but we can't risk damaging his liver by starting
the Fenretinide too soon.
We are still struggling with Jake's low platelet counts. His platelet count was 24,000 on Monday.
He is bruising very easily and even had a bloody nose today. He will probably need another
transfusion tomorrow. We are praying that his ability to make platelets on his own recovers soon.
We had a great time at my sister Michele's house on Saturday. All of the kids enjoyed playing in the kiddie
pool and especially playing with the water guns....no one escaped getting wet, even Gramma Dee. It was nice
to spend some quality time with my family. We have 6 grandsons and 1 granddaughter in my family so there
is no shortage of little kids for Jake to play with. The kids enjoyed their birthday celebration. We had a huge cake
with each child's name in a balloon on the cake. Then it was gift time...it looked like Christmas with all of the
toys. Jake and I returned home late Saturday night. Jake didn't want to spend the night in Milwaukee. He missed
his dad and he has had no interest in sleeping anywhere but home. I'm sure it has to do with the many nights
spent in the hospital.
Please continue to pray for Jake's healing and that his liver enzymes and platelets will quickly improve. Thank
you for remembering all of the other children who are bravely battling neuroblastoma...especially Hunter, Kimme,
Chris, Austin, Theo, Michael L, Jonathan, Bryan and Michael R.
Love, Natalie Jerry and Jake

Friday, July 12, 2002 at 08:50 AM (CDT)

Jake needed another platelet transfusion yesterday. His platelet count had dropped to 12,000!!! Gramma Dee
and Grandpa Russ took him to the clinic in the afternoon. Jake also had a routine check up by Dr. Brandt and
a hosts of blood tests run prior to us resuming the Fenretinide on Monday. Jake is doing well. He was
anxious to leave the clinic because we needed to go shopping for birthday gifts for three of his cousins. My family
is gathering tomorrow at my sister Michele's house in Milwaukee to celebrate the many July birthdays in our
family. We are all looking forward to seeing everyone. My whole family has not been together since Easter.
Of course, what is shopping without Jake getting a little something. We went to the School House store to
buy Thomas the Tank trains for his cousins and Jake chose "Mavis" to add to his collection. We did not return
home until after 8 pm and Jake was very tired. He did not sleep during his transfusion AGAIN, so by 9pm he was
asleep on the couch.

We are still worried and concerned about Jake's fluctuating platelet count, but Dr. Brandt has assured us that
this is not uncommon. They did draw blood yesterday to send off to a lab for HLA testing. This is a blood test
that will identify 6 factors of Jake's blood that will allow them to closer match a platelet donor to Jake. Currently,
Jake receives single donor platelet transfusions that are matched by his blood type and rh factor. By completing
the HLA testing, they will be able to match a donor by blood type, rh factor, and match the other 6 or so factors.
We hope that this will help Jake's body to better accept the platelets and eliminate any chance that Jake's
body will destroy them or use them up too quickly.

It is another beautiful, sunny day in Green Bay. Jerry is still busy on the farm. He is currently putting in hay
for silage and for bales. We are hoping that he will be able to take some much needed time off early next week.
Jake misses spending time with his dad.
We hope all is well with each of you and your families. Please pray that Jake does well with his Fenretinide next
week. We are praying that it goes as smoothly as last time. Have a great weekend.
Love, Natalie Jerry and Jake

Wednesday, July 10, 2002 at 10:54 PM (CDT)

Jake is doing great. His platelet count has still not stabilized, he was down to 20,000 today. We are checking
them again tomorrow. Hopefully, he will stabilize soon. Dr. Brandt told us that it is not unusual nor is he concerned about Jake's slow platelet recovery. He said it is common and is to be expected with the amount
of chemotherapy that Jake has had. Otherwise, things are fine. Jake has been busy watching a new wrestling
DVD (thanks, Gramma Clarie) and playing with his wrestlers. He has been riding his bike and playing baseball
in the yard with Dad.
We are enjoying our last few days until the Fenretinide begins on Monday. Jake had to have a full vision exam
today prior to starting the next cycle of the drug. He did great!! He thought that all of the tests were "awesome."
The staff at Prevea clinic was very patient with him and made the whole experience fun. The optometrist told us
that Jake's eyes are very healthy and his vision is normal. We are thankful for the good report.
Gramma Dee and Grandpa Russ are coming to spend the day tomorrow with Jake while I'm at work. I hope they
get to play outside on the jungle gym and enjoy the nice weather we are suppose to have.

Thank you as always for continuing to keep Jacob in your thoughts and prayers. Please remember all of his
friends who are fighting this disease as well. Especially Hunter, Jonathan, Chris, Michael L., Kimmie, Taylor,
Bryan, Kim, Andy, Theo and Michael R.

Take care, Natalie Jerry and Jake

Monday, July 08, 2002 at 12:52 PM (CDT)

We hope everyone survived the long holiday weekend....back to the daily grind!!
Jake did need to have a platelet transfusion on Friday. His platelet count dropped to 15,000. He was full of
bruises, but thankfully no bleeding. We had his counts checked today and his hemoglobin has dropped from
7.0 to 6.6 so he will going in to the clinic tomorrow for a red cell tranfusion. I can't imagine him having anymore
energy than he already has, but with a hemoglobin of 6.6 he should feel fatigued. Not Jake!!!!
Yesterday we drove south to Manitowoc (about 45 miles) to watch Alex play baseball. They lost their game,
but at least Alex wasn't injured. (for a change) We were able to take Jake along the shore of Lake Michigan.
This is the first time he has seen such a large body of water and he really enjoyed walking in the sand. He went
in the water up to his thighs and was having fun "riding the waves." It was wonderful to see the excitement of
something new through a child's eyes. How we adults take these things for granted. Jake made us remember
and appreciate our "first" time at the beach. We went to a small playground and Jake went down the slides and
on the swings. He was so happy to spend some time with Mom and Dad. We stopped for ice cream at an
old fashioned ice cream parlor and Jake got a chocolate ice cream cone. He ate the whole thing and couldn't
stop talking about our day!!! Alex's game started at 5:30 and Jake enjoyed watching his big brother play.
Jake was encouraging Al and cheering him on each time at bat.
Alex has been staying at our house while his Mom and Ben are on vacation. Jake is getting very spoiled having
his "cool" big brother around all of the time. We too are enjoying his stay with us.

There isn't much else to report. Jake has this week off from Fenretinide and we are scheduled to begin on
July 15th. Please continue to pray that this medication will have some positive impact on Jake's marrow disease.
I hope to update the photos soon with ones of Jake with his new hair. He looks great. His eyelashes are thick
and dark and long and his hair is almost all in. I will let you know when the news pics are up.
Thank you all for your continued support, prayers and thoughts.
Love, Natalie, Jerry and Jake

Friday, July 05, 2002 at 08:40 AM (CDT)

We hope everyone had a safe and happy 4th of July. It was a beautiful day in Green Bay yesterday and Jake
spent a good part of the day in our pool. Ben, Stephanie and Nicole Warwick came over to enjoy the pool with
Jake...the all had a good time. Jake says that he wants to be a lifeguard when he grows up!!
In the evening we went to the Chrisman's for a cook out and fireworks. Jake couldn't wait to light off some of the
special fireworks he had chosen at Uncle Sam's Fireworks store on Wednesday. It was an enjoyable holiday
for us.

We are rechecking Jake's blood counts today. They had actually stablized on Wednesday so he did not need
any transfusions. His platelet count was 20,000 and his hemoglobin was 7.2. We are hoping for the same or
better today. Jake is feeling great!!! He is so full of energy and his appetite has returned to normal. He is so
glad that he doesn't have to take the "yukky pudding" for awhile. Of course, the 7 days on seemed to go SO
slowly, but the 2 weeks off are just flying by. Jake will continue with his 2nd cycle of Fenretinide beginning July
15th. We received word from Dr. Kushner in New York that Jake's HAMA blood test was negative. This means
that Jake's body is NOT making antibodies against the 3F8 antibodies and that he should be able to participate
in the new antibody study in NYC when it becomes available. Dr. Kushner's recommendation was to continue
with Fenretinide and he will notify us as soon as the 3F8/ beta glucen study is operative.
Jake has been making the most of his summer. He enjoyed camping last weekend with Gramma and Grandpa Peters. Ben and Jake did alot of bike riding, played miniature golf and of course the game room. We are hoping to do some fishing this weekend if Jerry's schedule permits.
Jake's last tee ball game was Friday June 28th. He really enjoyed this season and we want to thank his coach
Pat Long for doing such a wonderful job with all of the kids. Next year, Jake will move to the next level where the
coach pitches the ball. He can't wait!!

We would ask that you remember all of Jake's friends who continue to fight their neuroblastoma especially Jonathan Powell who has recently relapsed. We pray that his parents will find the strength and courage to restore their son to health. Thank you all for your support, love and prayers.
Natalie, Jerry and Jake



We want to welcome my cousin Nicholas to the great Midwest. Nicholas moved from Pennsylvania to Chicago
yesterday and we are thrilled to have him so close to us. Hopefully he will not have any difficulty acclimating
to "beer and brat" country.

Tuesday, July 02, 2002 at 10:55 AM (CDT)

I know it has been awhile since I have updated...I'm sorry.
We have been very busy, but Jake is doing well. We finished
the last dose of Fenretinide last night. Overall, the
week went well. Jake doesn't like the taste of the "pudding," but he did an awesome job taking all 21 doses. This first cycle we did not notice any serious side
effects...just some moodiness and slight diarrhea.
Jake's platelets and hemoglobin are still dropping. He will
probably need a transfusion today. His platelets dropped
from 88,000 last Thursday, to 26,000 yesterday. We are
hoping that we can get them to stabilize soon. Jake still
has his central line but he has been enjoying our pool
nonetheless. The weather has been so hot and humid here
that he is willing to put up with the frequent dressing
changes to be able to swim.
We had some encouraging news yesterday. Jake's urine
catecholamines that were tested on June 24th came back lower
than the levels tested on June 4th. His VMA is down to
41.9 (from 59) and his HVA is down to 43 (from 53). We
aren't where we need to be yet, but we are at least going
in the right direction.
I promise to update later with Jake's comings and goings
of the past week. Thank you for keeping us in your prayers
and for the many wonderful guestbook entries.
Love, Jerry Natalie and Jake

Wednesday, June 26, 2002 at 09:38 PM (CDT)

Day two of the Fenretinide is complete. Six doses down, only 15 doses to go.
Jake is doing well with it. He tries his best to stall and bargain, but he knows it
has to be done. He is keeping his sights fixed on the end of the seven day course
and his shopping spree if he continues to do well. He likes checking off the boxes
on his incentive chart.
Today was a quiet day. Jake seemed more like his old self today. He had more
energy and wasn't as moody. His left leg didn't seem to bother him as much today. We are trying to keep him from too much physical exertion to minimize
the pain in his joints and muscles. We will be checking his blood counts tomorrow
and we hope that his hemoglobin has remained stable if not increased. The platelet
transfusion yesterday should keep that count high for a few days. We are hoping
to take Jake camping with Gramma and Grandpa Peters this weekend. They will
be camping about 2 hours from here at a nice "family" campground. They have
miniature golf, shuffel board and entertainment. We hope Jake is well and able
to go.
Jerry is finally getting to the end of his planting and hay baling....We hope that
he will be able to take a few days off soon so that we can all do something fun
together.
We hope all of you are enjoying the summer. Please continue to remember
Jake in your prayers and all of his friends that are fighting this horrible disease.
Love, Natalie Jerry and Jake

Tuesday, June 25, 2002 at 11:00 PM (CDT)

Today Jacob began taking the experimental drug Fenretinide. It went better
than I expected, so thank you for the prayers....keep them coming, we still have
6 more days. I opened the capsules and squeezed the thick neon yellow, oily
contents into a small bowl and added a few teaspoons of chocolate pudding. After
mixing well, the pudding took on a greenish color. Jake was a real champ. He
gagged a little, but we managed to get all three doses in today.
Jake's platelet count was down to 17,000 today so we headed to the clinic for
a transfusion. Jake was very lethargic this morning and once he got his Benadryl
he proceeded to sleep through the entire infusion and then some!!
After the clinic, I took him to his favorite toy store Toy Works and let him pick out
none other than ANOTHER wrestler. I told him it was a special toy for doing well
with his medicine. We are keeping an achievement chart and Jake gets to check
off each dose of medication and at the end of this cycle he will get to go shopping
for whatever he wants.....what are the odds that it will be a wrestler. Well, it is a
small price to pay to encourage him to take the meds. Our hope is that the
Fenretinide will begin to work on stabilizing his disease and give his bone marrow
some room to produce those precious platelets.
We are waiting to hear the results of Jacob's HAMA test from New York, otherwise
things are pretty quiet around here.
Jacob was in our pool today for the first time. His brother Ben was here and we
covered Jake's dressing well and let him have some FUN. He loved splashing around and jumping in with his water wings on.
The weather has been very hot here and tonight we are expecting severe thunderstorms and possibly some flooding. The summer is off to a strange start.
As always, thank you for your continued journal entries, your encouraging words,
thoughts and prayers. They have had such an amazing impact on our lives. We are staying strong and we are still focused on getting Jacob well.
We love you all,
Natalie, Jerry and Jake

Monday, June 24, 2002 at 09:39 PM (CDT)

My how time flies!!!! I apologize for the length of time between journal entries.
Jake is doing fine. We had an appointment at the clinic today and it was our first
trip back since June 5th. I must admit it has been nice not having to go to the
clinic or hospital...somehow you manage to almost forget about this disease when
you can stay away from there.
Jake's white count is great...4.2, but his platelets have dropped to 18,000 and his
hemoglobin is at 7.8. Dr. Brandt wants to recheck counts tomorrow and we are
praying that they will be on the upswing. This is the first real drop in platelets since
the end of April. Dr. Brandt attributes it to the disease in Jake's bone marrow.
The bone marrow is where white blood cells, red blood cells and platelets are made.
If Jake has considerable disease in his marrow, then that doesn't leave much room
for the "good" guys. We did receive the Fenretinide medication today and we
will be starting it tomorrow. Jake has to take 6 capsules three times a day for
seven days and then off for two weeks. We will be able to cut the capsules open
and squeeze the contents into some sort of food that Jake likes. Please pray
that this process goes smoothly and that Jake responds to the medication. Our
hope is that this med will have some positive affect on the bone marrow disease.
We are waiting to hear from New York regarding Jake's HAMA blood sample that
was sent a week ago. If the blood sample is HAMA negative, it is possible that
Jake may be able to resume the antibody treatments.
Jake is otherwise well.....still some bruising and stiffness in his legs especially
after he exerts himself. We took him to our local Relay for Life cancer relay on
Friday night. Jake was given a "survivor's" tee shirt and he wore it proudly.
We walked the track several times to raise money for the American Cancer
Society. At 9 pm they began the luminarie ceremony. Luminarie bags are placed
around the track with the names of those who have bravely lost their battle with
cancer and those who continue to fight. We placed a bag in memory of Cameron,
Michael Naselli and Mariah and bags in honor of Jacob and Bryan Wulf. They
turn off all of the overhead lights and all of the participants walk in silence around
the track with the many luminaries lighting the way. Jacob was so thrilled to see
the three bags with his name on it. A couple of our dear friends purchased luminaries in Jake's honor as well. It was a wonderful evening and we were so
proud of Jacob. He told me on the way home that he was going to keep fighting
his cancer and that he was going to "make it!" He referred to the secret weapon
in his body again that he uses to kill the cancer cells.
We were able to do some fun things over the weekend. We visited our friends
Stuart, Kim and their four daughters at Jellystone Campground on Saturday evening.
Jake had fun swimming in the kids pool, playing video games in the game room
and eating ALOT of marshmallows by the campfire. On Sunday Jerry and Jake
went to a graduation party at a park and Jake enjoyed playing on the swings and
running around. Our pool is ready for us to start diving into and Jake is anxious
to get in. We will have to cover his central line dressing and only allow in the pool
for 30-40 minutes at time and check the dressing. He will have to have a clean
dressing after each swim, but it will be worth it.
Please remember in your prayers Jake's many friends who also continue to battle
their neuroblastoma...Hunter, Jonathan, Bryan, Taylor, Austin and the many more.
Thank you for continuing to pray for Jacob, Jerry and I.

Wednesday, June 19, 2002 at 08:17 PM (CDT)

Jake has been busy enjoying the summer weather and his new swingset.
He plays on it everyday. He especially loves that slide and eating snacks and
lunch up in the fort. He is feeling GREAT!! He still has alot of bruises on his legs
because his platelets are continuing to stay steady at 30,000. Thankfully, he is
not too low to have to transfuse, but trying to keep an active 5 year old from
running, jumping and rough housing is impossible!!
Yesterday Jake spent the day with Gramma Clarie while I was at work. He played
with his wrestlers, played on the swingset and rode his four wheeler around the
yard. His brother Ben came over and Gramma took them both to Dairy Queen.
Jake also helped Jerry clean out the bins of the corn planter...he loves to get right
into the "dirty" work.
Jake and I took a short bike ride last night. Jake still has
his training wheels on and we have alot of busy streets by our house, so we only
went a short distance. He really enjoyed venturing out. As if his day was not
full enough, his brother Alex called and asked Jake if he would like to go
miniature golfing with him and his girlfriend Jamie. Of course, the answer was
YES, YES, YES!!! Jake could hardly wait for Al to pick him up. The three of them
went golfing and then to Dairy Queen AGAIN!! Jake as thrilled to be able to
hang out with his big brother and Jamie. We hope they know how grateful we
are for their gift of time and how truly happy it makes Jake. Thanks to both of you!!
There's not much new on the medical front. We received word that the Fenretinide
medication arrived at Dr. Brandt's office today. He needs to have the med approved
for use by the hospital board and then we will be ready to begin...probably early
next week.
We can't believe how Jake's hair is growing right before our eyes...everyday it seems to fill in. His eyebrows are back and his eyelashes are getting longer. He
looks so different. We've been through this once before when his hair grew back
last spring, but this seems to happening so much quicker.
Jake had his Pantamidene ( anti pneumonia ) breathing treatment today. Each
time it seems to get easier for him. He was a real champ today. After we were
done at the hospital, we had some errands to run. We had alot of things to pick
up at Walmart and of course, Mom caved in and bought Jake a wrestler. But what
a deal, there were two wrestlers in the pack for only $10.00. I can never pass up
a bargain. By the way, at last count Jake now has 95 wrestling figures. I think
that qualifies as an "obsession" rather than a hobby.
We hope you have all been able to take a look at the new photos on the website.
I will be adding more in a couple of weeks. As always, thank you for your continued
prayers, love and support and your guestbook entries.
Take care, Natalie Jerry and Jake

Sunday, June 16, 2002 at 04:18 PM (CDT)

Just wanted to let all of you know that
I have updated the photos on the website.
They are from April..please take a look.

Natalie

Saturday, June 15, 2002 at 08:07 PM (CDT)

Jake is having a great weekend. My sister Michele came to visit us on Thursday.
She babysit Jake while I went to work. She brought her 11 month old son Jack.
They played games during the day and went to the park in the late afternoon.
Jake enjoyed playing with Jack and helping out Aunt Michele. Michele and Jack
spent the night and we all hung out together on Friday watching it rain. Gramma
Dee and Grandpa Russ were bringing Jack's older brother Max here on Friday
from Wisconsin Rapids. Max got to spend a week with Gramma Dee. We were
all anxious for him to arrive. Jake could hardly wait to play with Max.
The boys spent the afternoon playing with Jake's Thomas the Tank train set,
the Hot Wheels car set and the race car set. I think they played with EVERY toy
in the house. Friday night Jake told me that the two "babies" wore him out.
I think Jake liked being the "oldest" for a couple of days.
Ben came over Friday evening to spend the weekend with us. He and Jake
rented a couple of movies and Nintendo games for the weekend.
Today Jerry was able to finish Jake's wooden swingset. It turned out great. Jake
and Ben wasted no time swinging on the swings, sliding down the fireman's pole
and eating their lunch up in the fort. We just need to fill in the sand box and we
are finished!!
We are looking forward to spending a nice Father's Day with Jerry tomorrow. Jake
couldn't wait another day to give Jerry his gift that he made in preschool. He made
his handprint in playdoh. Jerry was very touched by the gift.....Jake loves to be
early.
Thank you for the supportive guestbook entries and for keeping Jacob in your prayers.
Love, Natalie Jerry and Jake

Friday, June 14, 2002 at 11:42 AM (CDT)

I apologize for the long delay in journaling. I have been trying to gather all of the
information regarding Jake's current disease status so that I may be as thorough
as possible.
We left early Wednesday morning for Milwaukee for Jake's MIBG scan. We had
to wait about an hour for the machine to open so Jake played in the waiting room
and ate an early lunch in the lobby. His scan took about 40 minutes. He did a
great job (as usual) of lying still. I read four books to him while they were doing the
scan. I had prepared myself that the scan would "light up" in various places in
Jake's body because of the extent of his marrow disease. I was watching the
screen as they were scanning and couldn't help but notice that there were not
any bright spots. I just figured I was reading it incorrectly. I had asked the tech
prior to the scan if it would be possible to get results from the doctor before we
left the hospital. She wasn't sure, but said she would ask. We were finished with
the scan and in walks a doctor. This is highly unusual. Under most circumstances, the radiologist reads the scan and sends his comments and
opinion to the child's doctor.
Dr. Stye was a charming, kind man who came into the room and looked at Jake
and said, "hi, you look GREAT on the inside....you look as good on the inside
as you do on the outside!" He proceeded to tell us that Jake's MIBG scan looked
great. We were confused. We know that Jake has measureable disease in his
bone marrow and that a MIBG scan shows bone, marrow, organs, etc. There was
slight uptake in Jake's left femur and that's all. To sum up Jake's latest tests,
he has a clear head ct, clear chest, abdomen and pelvis ct scans, an unchanged
PET scan, a relatively clean MIBG scan, bone marrow biopsies/aspirates with
significant amounts of neuroblastoma cells and his urine catecholamines have
risen into the 50's. We are grateful for the areas that are clear, but we are still
struggling with the disease in his bone marrow.
Jake still feels great!! He continues to have alot of energy and a good appetite.
He gait still seems to be stiff to us, yet he has no trouble running.
After the scan, we met with Kris and Kevin Kerwin. It was nice spending the day
with them. Jake enjoyed the entire day...of course the day revolved around HIM!!
We took him to Ed Debevic's for lunch and Jake thought it was a cool place. The
waitstaff performed two songs where they stood on the counter and danced.
Jake liked their goofy outfits and the way the restaurant was decorated. He was
flirting with a table of teenage girls...he wanted to take a picture of one that remindedhim of Al's girlfriend Jamie. Jake kept pointing the camera at her, but he was too chicken to take the picture. I wish he would look at girls his own age.
After lunch we headed to Mayfair Mall to go to the Build a Bear Workshop. Kris
and Kevin wanted to have Jake make a bear for himself. The store is unbelievable.
You choose your bear (unstuffed) and then you choose the voice sayings that you
want, you pick out a heart for him/her and then you proceed to have him stuffed.
Jake helped to push the pedal on the machine while the stuffing went inside the
bear. He then got to "fluff" and brush his bear, pick out an outfit for him and a
name. Jake named his bear "Slugger" because he dressed him in a baseball
outfit. He registered his bear and got an official birth certificate. We want to
thank Kris and Kevin for the bear....Jake doesn't let it out of his sight.
We met up with Wendy Naselli, her son John and his friend Zachary to play
miniature golf. The weather cooperated and the three boys ( plus Kevin) had
a great time playing golf. We enjoyed our day in Milwaukee immensely. It was
so good to see the Kerwins and Wendy Naselli and I think it meant alot to them
to be able to spend some time with Jacob. We want to thank Kris and Kevin for the
bear and Wendy for treating to miniature golf.
We didn't arrive home until almost 8 pm. Jake took a short cat nap on the way
home. We stopped at Culver's for ice cream. Jake told Gramma Clarie and I
that he wanted to eat at table all alone. So there he sat, at a table for four all
alone...he ate his chicken strips and his custard and pretended to not even know
us. Mister Independent.
I am sorry it took me so long to update the website...I know how all of you worry
when you don't hear from us. We are doing fine and hope to enjoy the weekend
together. We want to wish all of the fathers, stepfathers and fathers-to-be a
wonderful Father's Day. May all of you enjoy the day with your children.
Love, Natalie Jerry and Jake

Tuesday, June 11, 2002 at 09:19 PM (CDT)

Jake enjoyed spending time with Peggy today. They played hockey in the garage,
boxing and watched a wrestling video. Jake watched a little of the Harry Potter
movie with Peggy's son Ben. We are so grateful to Peggy and her family for
opening their home and their hearts to Jacob. Now that it is summer, Peggy's
three children, Nicole, Stephanie and Ben are at home and we appreciate all of them
making room for Jacob. He so enjoys his visits.
Jake rode his bike for awhile today and helped Jerry put the finishing touches on
his wooden swing set. It is almost complete. Jake has already climbed up into
the fort and across the monkey bars.
We will be leaving around 8:15 tomorrow for our trip to Milwaukee. We hope that
the scan will only take about 40 minutes. We have plans to meet Kris and Kevin
Kerwin and possibly Wendy Naselli afterwards. We are going to take Jake to
a place called Ed Debevic's for lunch. It is a 50's style diner where the staff is
dressed in period customes and they make a practice out of being "rude" to the
customers. They sing and dance on the counter as well..... it is a fun place to
dine. Jake will love it. We hope to take him miniature golfing afterwards if the
weather permits. We are looking forward to spending some time with good friends.
We should have the results of the MIBG scan by Thursday. We don't quite know
what to expect or to hope for. Jake has not had one of these scans since last
August and at that time it was clear. We suspect that there will be spots that
show up this time due to the disease in his bone marrow. We can still hope and
pray for a favorable outcome.

Thank you for keeping us in your prayers. We are doing much better this week and
as always, Jacob is our strength. He brings joy and laughter to our lives everyday.
Love, Natalie Jerry and Jake

Monday, June 10, 2002 at 10:08 PM (CDT)

I wanted to add a poem that someone had posted on the Neuroblastoma list serve
of which I subscribe. It sums up our life and our feelings...I hope you enjoy it.

****Don't Look Back********
As you travel through life there are always those times
When decisions just have to made,
When the choices are hard, and solutions seem scarce,
And the rain seems to soak your parade.
There are some situations where all you can do
Is simply let go and move on,
Gather you courage and choose a direction
That carries you toward a new dawn.
So pack up your troubles and take a step forward-
But think about all the excitement ahead
If you can be stalwart enough!

There might be adventures you never imagined
Just waiting around the next bend,
And wishes and dreams just about to come true
In ways you can't yet comprehend!
Perhaps you'll find treatments that spring from new things
As you challenge your status quo,
And learn there are so many options in life,
And so many way you can grow!
Perhaps you'll go places you never expected
Or travel to fabulous , faraway worlds
And wonderful spots in between!

Perhaps you'll find warmth and affection and caring
And somebody special who's there
To help you stay centered and listen with interest
To stories and feelings you share.
Perhaps you'll find comfort in knowing your friends
NB Group are supportive of all that you do,
And believe that whatever decisions you make,
They'll be the right choices for your child.
So keep putting one foot in front of the other,
And taking your life day by day...
There's a brighter tomorrow that's just down the road-
Don't look back! You're not going that way!

Author- Anonymous

Monday, June 10, 2002 at 09:56 PM (CDT)

Our trip to Milwaukee was quick and painless!! It turns out that Jacob did not
have to have a peripheral iv placed for the MIBG injection. In the past that had always administered the radioactive isotope through his central line and they were
able to do that today as well. Jake was very happy.....no pokes!! We left Green
Bay at 8:15 am. I had to wake Jacob up, but once he was in the car he was
chatty and ready to go. Gramma Clarie came along and it was nice to have
someone to keep Jake occupied in the back seat. They played travel Guess Who,
did some "schoolwork" and played with wrestlers.
We arrived at Children's Hospital at 10:45 am, we quickly registered and only
waited a few moments before Jake's name was called and we were headed for
Nuclear Medicine for the injection. The injection took only a few minutes and we
were on our way. Jake remembered that the coffee shop at Children's had a
slush machine and he was looking forward to getting one to drink on the ride home.
The cherry slush machine was broken, so he decided to forego the lemonade slush
and we headed home.
We stopped at the field where Jerry and Jake's brother Al were cutting hay and
Jake was able to ride in the tractor with Jerry...but not for long. The sky was
blackening as we were driving towards the field and no sooner did Jerry get out
to come and get Jake and rain began to pour. The guys sat in the pick up truck
and ate their Arby's roast beef sandwiches and waited for a break in the rain.
Jake didn't care he was just happy to be with Dad.
Jake's counts were good today.... his white count is up to 2.2, his hemoglobin
is 8.8, his ANC is 1496 and his platelets are still hovering at 30,000. We will
recheck counts on Thursday. Dr. Brandt is working on obtaining the Fenretinide
medication for Jacob. We did confirm that we can expel the liquid from the capsules and pour it on to some food that Jake will eat. We are hoping that this
will be manageable for him.
We will be returning to Milwaukee on Wednesday for his MIBG scan. We will keep
you posted regarding the results.
We are continuously strengthened and blessed by your kind words, deeds and
prayers.
All our love to you,
Natalie, Jerry and Jake

Sunday, June 09, 2002 at 11:16 PM (CDT)

Jake had a good weekend. He played tee ball on Friday night and he asked
his coach if he could bat last. Jake knows that the child that bats last gets to
run all three bases without having to stop. Of course, Coach Long said "yes."
Jake ran as hard as he could with a huge smile on his face. It was tee ball picture
night and Jake smiled for those as well. We think he is proud of the gap in his
mouth from his missing tooth. Jake is walking with stiffness in his hips and legs.
He is not complaining of any pain, but he seems to be having difficulty running
and walking. This could be due in part do the bone marrow biopsies that were done
on Tuesday, but we also think that it is due to the increased amount of disease in
his bone marrow. Jacob has not stopped doing ANYTHING!!! He insisted on walking around our small local zoo today and refused a stroller. He is still playing
baseball out in the yard, running to Gramma Clarie's house, riding his scooter and
his bike!!! There is no stopping him.
Each day Jake's hair seems to be growing more. He is excited to see what color
it comes back and whether it is curly or straight.
Jerry was very busy working all weekend. Jake had a chance to ride with him
this evening while they cut hay. Saturday Jake helped his Aunt Terri and Uncle
Mike put together his wooden jungle gym swingset. It is not complete yet, but the
ladder is up so that Jake can climb up into the fort. Thanks Terri and Mike for your
help!!
Tomorrow I have to take Jake to Children's Hospital for his MIBG injection. The
radioactive isotope needs to be injected into a peripheral iv (not his central line) at
least 48 hours before the scan can be run. They will place an iv in Jake's arm
when we arrive at the hospital, inject the isotope, and then we will be on our way.
His scan is scheduled for 11:00 am on Wednesday. Jake had to begin taking the
awful iodine drops today to protect his thyroid from the iodine based MIBG
isotope and scan. These drops are horrific tasting and even though it has been
over a year since he had to take them, Jake remembers them all too well. He has
to have 1 drop three times a day for three days prior to the scan and for 6 days
following the scan. I put one drop of iodine in a small medicine cup with a little
grape juice, and he seemed to tolerate it pretty well. If only there was another
way!!!
We are continuing our search for treatment options for Jake. Dr. Brandt is working
on obtaining an oral medication called Fenretinide that has shown some promise
in the fight against Neuroblastoma. Our doctor has to apply for a "compassionate
use" waiver because the study is currently closed. We are hoping to have the
meds in hand within the next week or so. We will have to be creative with this
medication. The required dose is about 8-10 pills three times a day for 1 week and
then there is a three week break. We are hoping that we can put the contents of
the pills in pudding, yogurt or applesauce and then we pray that Jacob will take them. I think it is unreasonable to believe that Jake or any child his age can
swallow that many pills.
We want to thank you all for remembering Jake in your prayers. We will keep
you posted on his progress. Please also remember Jake's friends, Michael, Hunter,
Jonathan, Jacob B., Kimmee, Chris, Theo, Austin and the many others who are
bravely fighting their battle with Neuroblastoma.
Love, Natalie Jerry and Jake

Thursday, June 06, 2002 at 11:27 PM (CDT)

Jacob spent the day with Gramma Dee and Grandpa Russ. He started the
morning a little "crabby," but got over it as the day went on. Gramma and Grandpa
took Jake shopping and to run some errands with them today. They went to
Fleet Farm where Jake helped to pick out a new bed for our dog Hunter and Jake
thought that Hunter should also have a nice big rawhide bone. They also went
to the grocery store where Jake desperately needed Rasperry Newton cookies
and marshmallows to make smores. Then it was off to Fazoli's for lunch. Jacob
told Gramma and Grandpa they he wanted to sit at a table by himself, and of course
that's exactly what he did. He sat about 4 tables away from them and happily
ate his lunch alone....5 years old going on 50!!! After lunch they went to Jake's
favorite store Toy Works. This toy store happens to be WWF Wrestling figurine
heaven!!! It's no surprise that Jake came home with 4 new wrestlers. Needless
to say, Jake had a great time. I can't believe what "push-overs" Gramma and
Grandpa are!!
Jake's brother Ben is spending the night tonight and tomorrow is his 14th birthday.
Ben wanted a chocolate cake with chocolate frosting so I baked it tonight. Jake
couldn't wait to give Ben the present from him, so he gave it to him tonight. Jake
got Ben a Simpson's cd from the tv show. Ben loved the gift and the card from
Jake. We will officially celebrate his birthday tomorrow.
We have a busy weekend planned. We hope the weather cooperates so that we
can enjoy the next few days with Jake.
We want to thank you all for keeping us in your prayers during this tense and
stressful time for us. Each day we grow stronger and more confident that we will
find the right treatment option for Jake. Thank you for being there for us.
Love Natalie Jerry and Jake

Wednesday, June 05, 2002 at 01:25 PM (CDT)

It has been a tiring two days. Jake had his bone marrow aspirates and biopsies
done yesterday and his bone scan done today. We have good new and bad news.
The good news is that Jake's bone scan is CLEAN!! The bad news is that his
bone marrow biopsies and aspirates show increased neuroblastoma cells in his
bone marrow. As a result, Jake is not eligible to receive his vaccine in Texas
at this time. We are still firm in our decision to not proceed with any aggressive
chemotherapy for now. We are examining a few options right now, all of which
do not involve toxicity to Jacob's body. We are confident that we will choose the
one best suited for Jake at this time. He has a MIBG scan scheduled for next
Wednesday at Children's Hospital in Milwaukee. The results of that scan will complete the study puzzle and we will have a detailed work up of Jake's current
disease status. We are still encouraged by the fact that Jake has NO bulk tumor
masses in his bones, head or organs. We just keep fighting this stubborn monster
in his bone marrow. Jake continues to feel great!! He is sore today because of
the bone marrow tests yesterday. They draw fluid and samples from both the
right and left and front and back of his bones. We are amazed that he walks around
at all the next day. When I took him to the hospital for his bone scan today, I
asked him if he wanted a wheelchair and his response was, "heck no Mom, I can
handle it!"

We are very anxious to begin Jake on some form of therapy in hopes of delaying
the disease progression. We will be enrolling Jake a few Phase 1 and Phase 2
studies and see which he may be eligible for. Our wish is still for Jake to be
able to have a fun summer without trips to the clinic and hospital stays.
Please know that we are NOT giving up. Jacob is a very strong child and if anyone can beat this disease he's the one. We asked Jacob last night if he wanted us to keep trying to get him better and he said, "you don't have to Mom and Dad, I can do it myself." He said that he has a secret weapon in his body that he uses to
fight the cancer. He told us that when we see him jumping off the couch and running around, it's because he is jumbling the cancer cells and then the bee-bee
gun he has in his body shoots at the cancer cells like targets. We were in awe
of his strong use of visualization and his continued will to fight his cancer. We
promised him that we would continue to fight along side him and to pray that God
will grant us the miracle that we pray for.
Please continue to pray for Jacob and for Jerry and I. We will continue to travel
this road that God has chosen for us with strength, love and courage. Please
pray that Jake continues to be free of pain and can enjoy his summer.
Thank you all for your thoughts and prayers.
Natalie, Jerry and Jake

Monday, June 03, 2002 at 09:22 PM (CDT)

I will take a few moments and finishing telling you about Jake's weekend. The
weekend was capped off by an outing to a Wisconsin Timbler Rattler's game
in Appleton, WI. Our local support group, Families of Children with Cancer planned
the outing and it was great fun. About 75 people attended. The group consists
of childhood cancer survivors, families with children who are currently undergoing
treatment as well as families of children who have lost their battle with cancer.
The group is a wonderful source of strength, education, support and fun for us.
We started the day around 11:45 with a catered lunch at the ball park. Kay
Klinter is the person who organized the event and she was able to convince the
Timber Rattler's sales manager to allow two of the kids to meet with the players
before the game. Jake and Bryan Wulf were chosen. Jerry, Jake and Jake's uncle
Mike along with Bryan and his dad were escorted right into the Rattler's locker room
as the guys were getting ready for the game. The players were very polite and
chatted with the boys as they were getting ready. One player handed Jake his
bat that he was going to use in the game and told him he could have it. Several
players autographed the bat, posed for pictures and signed baseballs for the two
boys. Jake was ecstatic. I think Jerry and Uncle Mike enjoyed it as well. I'm
just disappointed that I sent Jerry and Uncle Mike down with Jake. I missed my
one opportunity to see grown men in a sports locker room!! I guess I'll just have
to wait to get the film developed.
The weather was a little chilly yesterday and there were a few sprinkles, but all
in all everyone enjoyed the game. Jake was able to sit next to his friend Ben
Klinter and they had fun goofing around throughout the whole game.
Today was Ben Klinter's 5th birthday party at Chuckie Cheese. Jake was thrilled
to have been invited and couldn't wait to get there. He hasn't been to Chuckie
Cheese since he was diagnosed. He enjoyed all of the games, the ball pit and
the tubes and slide. They had pizza, soda and cake. When I picked Jake up,
he couldn't stop talking about how much fun he had. He can't wait to go back.
It rained in Green Bay all day today, so Jerry was home most of the day. He
and Jake got to hang out together and watch wrestling. We are taking it easy
this evening. Jake's bone marrow tests are scheduled for 1:00pm tomorrow. The
challenge will be to keep him from wanting to eat before the tests. He can not have
anything to eat or drink for 8 hours prior. We are making sure that he "fills up"
tonight. Please remember us in your prayers tomorrow...we are praying for
favorable results.
Thank you as always for the wonderful guestbook entries and the caring thoughts
and encouraging words.
Take care, Natalie Jerry and Jake

Sunday, June 02, 2002 at 10:07 PM (CDT)

Whose idea was it to make weekends only 48 hours long?? Jake had a great
weekend. On Friday he played tee ball. The Purpler Panthers got their official
tee ball t-shirts and new baseball caps. He played against his friend Nathan
from preschool. All of the kids did a great job. Jake likes to play second base,
because alot of the hits go that way. On the way out to the field, I heard Jake
say "Excuse me coach, can I play second base?" That's our Jake, not afraid to
ask for what he wants. After the game, Jake still wanted to stay and run the bases
"just one more time."
Friday evening Jake and I went shopping for his friend Ben's birthday party which
is tomorrow. We went to Toy Works where Jake bought himself a new wrestler
(with his own money) and we found one gift for Ben. Then it was off to Shopko
where we finished shopping for Ben. Jake and I had to stop at St. Vincent's Hospital to pick up some supplies before heading home. Jake and I went into to
the chapel for a few minutes. Jake always sits by himself in a pew and prays
privately. When we left the chapel he told me that he thanked Jesus for being so
good to him.
Saturday Jake and I had plans to go to Wisconsin Rapids to visit my family. My
sister Michele was going to be there from Milwaukee with her two sons, Max
and Jack. My sister Bernie who lives in Rapids was going to meet us at Gramma
Dee's house with her two youngest boys Nick and Michael. Jake and I headed
to Rapids around 10 am. I had noticed that Jake had some small purplish/red
spots on his neck and shoulder. These spots are small bruises that are common
when the platelet counts is low. The docs had not asked us to check Jake's blood
counts since last Tuesday, but we thought we should page Dr. Brandt and see
if there was any concern about low platelets on Saturday. I spoke with Dr. Brandt
on my cell phone enroute to Wisconsin Rapids and wouldn't it figure that he wanted
me to bring a blood sample to the hospital as soon as possible in case Jake's
platelets were dangerously low. We were about 15 miles from home, so we
turned around and went home. I drew his blood and Jake and I brought it to the
hospital lab and waited for the results. Fortunately, Jake's platelets were 26,000.
He did not need a transfusion, so we were back on the road to Rapids. Of course,
it was now about 1:15 pm and we still had a two hour drive ahead of us but it
was all worth it. Jake had a GREAT time playing with his cousins. We played
soccer in Gramma's yard and then we took Jake, Max and Nick miniature golfing.
What a treat. Jake and Nick are the same age and Max is almost 3. Max and Jake
especially loved the "water" holes. They both had wet shoes by the time they
were done. It was great to be able to spend time with all of them. Jake and I
headed home around 8:00 pm that night. It was much later than I hoped to leave,
but we soon realized that a greater power was guiding our journey. As Jake and
I were about 30 miles from home, we looked up ahead in the sky and saw bright
lights. As we drew closer, we realized that they were fireworks!! We were driving
straight towards them. They were beautiful!! I realized that this was the first time
since Jake was about 2 yrs old that he had seen fireworks this close up. We
pulled the car to the side of the road and rolled down the windows and enjoyed the
spectacular view. Jake and I were both "oohing" and "aahing." We were able
to see the entire display. It was a wonderful ending to our crazy, but wonderful
day. Jake and I spent our car ride talking, singing and chatting about everything
and nothing. I wish I could freeze these moments and hold them forever.
I have more to journal about Jake's weekend, but I am growing tired. I will continue
tomorrow.
On the medical front, Jake has his bone marrow biopsies/aspirates scheduled for
Tuesday and a bone scan scheduled for Wednesday. We ask that you keep Jake
in your thoughts in prayers over the next few days that the test results are
favorable. We are praying that these tests also reveal stable disease and that
we may proceed with his vaccine.
More later.
Love, Natalie Jerry and Jake

Friday, May 31, 2002 at 08:57 AM (CDT)

Thursday seemed anti climatic after the exciting events of Wednesday. Jake was
able to half of the day with Peggy playing at her house. They played hockey
outside, boxing, baseball, ate lunch and played some more. I don't know where
Peggy finds all of her energy. We are blessed to have such a giving and caring
person who wants to spend time with Jake. He so enjoys his time spent with her.
Gramma Clarie picked Jake up after work and he spent a few hours at her house.
They watched a movie, did some "schoolwork" and played with trucks and farm
equipment.
Jake continues to feel great. His cold is almost gone and his counts are remaining
stable. We are hoping to have his bone marrow aspirates/biopsies done on Tuesday
and possibly a bone scan and ct scans. We need to have all of these studies
completed to confirm Jake's eligibility to start the vaccine. Please continue to
pray for stable or lessened in disease in Jake's bone marrow.
Today, Jake and I have alot of errands to run. He is invited to his friend Ben's
birthday party on Monday so we need to go shopping. Jake is invited to play
at his friend Jared's for a few hours today and he plays tee ball at 5:00...another
"fun filled" day.
We hope everyone is enjoying the warm, sunny weather. Jerry is getting our pool
ready as I write this. Hopefully, we will get alot of use out of it this summer. Jake
can hardly wait.
Thank you for continuing to pray for Jacob and for Jerry and I. We hope you have
a great weekend.
We would like to congratulate Stephanie and Bobbi who are graduating from Bay
Port High School this weekend and also Alicia ( Michael Naselli's sister) and
Eric True who are being married tomorrow. We wish all of you the best and
brightest futures.
Love, Natalie Jerry and Jake

Wednesday, May 29, 2002 at 08:37 PM (CDT)

Today was Jacob's last day of preschool. He is so excited to have "graduated."
He was anxious for today to come. He and his classmates have been practicing
their end of the year program for weeks. Jake told me this morning that he wanted
to keep the program a "secret" so that I would be surprised. He also told me,
"Mom, I think you better bring your hankie or some tissues because you might
cry." How perceptive!! Of course I cried. His class performed a play based on
a book called "All about Me." Everyone had a part to play. Jacob had the role
of one of the "friends." He got to walk in carrying a baseball glove and saying,
"hello, friend, hello." After the play, the class sang three songs and then they
recited the alphabet while doing it in sign language. Afterwards, each child said
their name and signed it for the group. It was very impressive. We were so proud
of Jacob and all that he has learned and accomplished this year despite his
many absences.
We are so grateful to his teachers, Mrs. Klimek and Mrs. Koehn and to all of the
parents who helped to make this such a special school year for Jacob. We are
thankful that Jacob had the opportunity to make so many new and wonderful
friends. We know that he will cherish these memories always.
Jerry and I have decided to not do anymore chemotherapy for Jacob at this time.
We believe that we have gotten the maximum benefit from the chemotherapy and
to continue at this point would just pose a greater risk to Jacob. We feel that
his body needs a break. He is feeling so good right now and we want to work on
getting his body healthy rather than focusing on the disease. We are waiting for
word as to whether or not we can go to Houston for the vaccine. If Jake is eligible
we will be leaving as soon as June 9th. Please pray that the right treatment will
present itself to us. Jerry and I have prayed for the right answer and we feel
confident in our decision to not pursue chemotherapy at this time.
We have many irons in the fire and I continue to network with all of the top
Neuroblastoma docs in the country in hopes that the right treatment will present
itself. In the meantime, we are going to continue to live each day to its fullest and
enjoy the gift and blessing that is Jacob.
We hope that all of you are well. Thank you for your continued words of support,
love and encouragement. Please know that we carry them with us always.
Love, Natalie Jerry and Jake

Monday, May 27, 2002 at 01:46 PM (CDT)

What a busy weekend!! I can't believe how increasing more difficult it is for me
to steal away a few moments to sit and journal. I hope that's a sign that we are
busy enjoying life!!! Where to begin...... Friday was Jake's field trip to Austin
Straubel airport in Green Bay. I was fortunate enough to be able to chaperone.
Both the morning and afternoo preschool classes attended. That meant 40 preschool children, about 15 parents and two teachers. The bus ride seems to
be the most fun of all for the kids. They get so excited each time the bus takes
a turn and they practically slide out of their seats. The noise level is unbelievable.
We arrived at the Executive Air terminal which houses private jets, helicopters
and prop planes. Our tour guides name was Mark and he was extremely knowledgeable and patient with the children. He took us into two hangers where
the kids could see a helicopter, a plane with floats, a leer jet and the maintenance
area where they were taking planes apart. The kids were very excited and even
asked questions. He then took the children into the radar room and showed them
how the weather system works. Most of the kids just wanted to know if they
could fly the toy airplane that Mark using as an example. It was a very educational
trip. I know that the adults learned alot.

After school, Jared, Jake and I went to Arby's for lunch and they we headed to
the miniature golf course. It was a windy day, but sunny and warm. Jake was
frustrated playing golf. I took them to a course that he had never been to and it
was a tough for the little ones. Jake certainly does not hide his anger or frustration.
He was so mad that he didn't get any hole in ones and that he had to putt so many
times. His friend Jared had a good time. Jake kept reminding me that it was
MY fault for taking him to such a hard course. Ah, the rewards of motherhood!!!
Later that day, I took Jake and his brother Ben to our farm which is about 30 miles
north of our house. Jerry was working there and we needed to bring him some
dinner. We got to spend some time with Jerry in the small camper he has up
there and then we headed home.
Saturday was a very rainy day. We decided not to go camping with Gramma
and Grandpa, because it was cold and damp and Jake is still fighting a cold. He
has been coughing and sneezing since Thursday. We don't want to chance a
reoccurrence of the pneumonia. Jerry was able to spend the entire day Saturday
with us. It was so wonderful to have him home. He has been working so hard
and long hours the past couple of weeks. We lounged around Saturday and then
after dinner we took Jake and Ben to see Spiderman at the movie theater. We
all enjoyed the time spent together and the movie. One problem, now Jake wants
to be Spiderman and he keeps leaping from the sofa to the floor and crawling down
the hallway. He wants to keep acting out the movie with me and of course, he
remembers all of the lines!!
Sunday was my day to get caught up around the house. Jerry took Jake and Ben
up north to the farm in hopes that they could ride their four wheelers but the fields
were too wet. The boys had fun playing in the camper and around the farm. They
got to see the baby calves. I think we are hope to 5 or 6 now. Jake continues to
name each one. We have Jessie, Billy, Woody, Jimmy and Jamie.
Today I am trying to catch up on office work, returning emails and laundry. I hope
to be able to add some new photos to Jake's web page this evening. They are long
overdue.
Jake is feeling great despite his cold. We will be checking blood counts tomorrow
and hopefully sitting down with the docs to discuss our next step. Jerry and I are
torn between the vaccine or another round of chemotherapy. The doctor in Texas
said that they could vaccinate Jake as soon as June 11th, so we need to decide in
a hurry. To be honest, it has been nice to think about Jake's illness for the past
week. He has not needed any meds, iv antibiotics or tests. It is as close as we
have come to leading a "normal" life in months.
Please pray for Jerry and I that we will make the right decision for Jake. We
are confident that the answer will come to us. We hope all of you had a wonderful
weekend.
Take care, Natalie Jerry and Jake

Thursday, May 23, 2002 at 04:26 PM (CDT)

Of course it was too good to be true that
we could spend an entire week away from
the clinic. Jake needed to go in today
for both platelets and red blood cells.
I was working when the clinic called, so
Peggy was good enough to take Jake to the
clinic to get him started. Gramma Clarie
met her there later. A platelet and red
blood transfusion is a 5-6 hour ordeal.
I am at the clinic with Jake now and he is
awake, crabby and watching Toy Story 2.
I am glad to get this out of the way today
so that Jake can enjoy a nice holiday weekend.
Tomorrow is his preschool field trip to
the airport and we are planning to have
Jake's friend Jared come home from school
with us. I hope to be able to take the
boys miniature golfing.
I'll leave you with the sentiment of the
day!! When Jake walked into the clinic
today he said to the nurses, "God Almighty,
I'm here again. He took the words right
out of my mouth.
We hope that all of you enjoy the holiday
weekend.
Natalie, Jerry and Jake

Wednesday, May 22, 2002 at 12:21 PM (CDT)

Once again, the past couple of days have flown by me and I have not had time
to sit and journal. Jake is doing GREAT!! We finished the last dose of his iv
antibiotics yesterday!! YEAH!! We are also finished with neupogen and the
diflucan med. We don't know what to do with all of our spare time. HAHA.
Jake' s counts are good. His white count on Monday was 7.9, ANC- 7189
hemoglobin- 8.6 and platelets- 39,000. We are rechecking counts tomorrow.
We hope that his platelets will continue to rise. Dr. Brandt has contacted the
docs in New York and Texas regarding the antibody therapy and vaccine therapy
respectively. We are waiting for their recommendations. It is possible that another
round of chemo may be necessary before proceeding with the immunotherapies.
I spoke to a wonderful doctor from Children's Hospital in LA last night. He is
aware of Jacob's case and his current disease status and he made some
reasonable suggestions. We are researching every possibility for Jake. We
hope to arrive at a decision soon.
Jake only has 5 days of preschool left and we
would like to see him to complete the year. His class is taking a field trip on
Friday to the airport and they have their end of the year program scheduled for next
Wednesday. Jake is excited about participating in both. Gramma Dee and
Grandpa Russ came to stay with Jacob yesterday while I was working. Gramma
Dee was able to be parent helper at preschool AGAIN. I think both she and Jake
are getting spoiled.
Jerry is very busy working on the farm. We have actually had four days of no
rain and warmer temps so he is making the most of it. He hopes to be able to
take a short break after Memorial Day. Jake misses him so much. Jerry leaves
in the morning before Jake is awake and usually doesn't return home until after
8pm. I think Jake gets tired/bored of spending so much time with Mom.
We are hoping to sneak some fun in this weekend. Jake and I may go visit my
sisters and their families in Wisconsin Rapids. Gramma Clarie and Grandpa Jerry
will be camping in Sturgeon Bay (Door County) this weekend so we may go spend
a day with them as well. We are hoping for nice weather.
We hope all of you are well and anxiously awaiting summer. Thank you for your
continued guestbook entries. They are an enormous source of strength and comfort
to us. Please know that we appreciate it.
Love Natalie Jerry and Jake

Sunday, May 19, 2002 at 10:26 AM (CDT)

This weekend is flying by. Jake had a great time playing tee ball on Friday night.
His team is named the Purple Panthers and for their first night playing together,
they all did well. Jake's teamed played against the White Wolves. One of his
good friends from preschool, Jared is on that team. It was fun to watch them
cheer for each other and tell each other what a good job they did.
Jake did a good job hitting the ball, but an even better job fielding the ball. He made
three accurate throws to first base from the second base position. His big brother
Alex came to the game and was out in the field with Jake giving him pointers. You
could tell how proud Jake was to have his high school brother helping him.
We got the results from Jake's PET scan and the news is good. Jake still has
areas that "light" up on the scan, but no new areas of disease and no solid tumor
masses. The area above and below his right knee that were evident in the February
scan are almost gone. This is a small victory, but a victory just the same. As
we always say, we are going to have to win this war one battle at a time. We will
be consulting with the New York docs on Monday or Tuesday and get their input
regarding our next step in treatment for Jake. Jake is feeling great. He has
recovered quickly and almost completely from the pneumonia. He is eating well
again and has his usual amount of energy and spunk.
Saturday I took him to a local park to spend time on the large playsets. He had
so much fun going down the wiggly, bumpy slides, the high curly slide, and over the
bridges, monkey bars and swings. We played hopscotch in the school playground
and tic tac toe. Jake and I had a great time despite the gray and cool weather
here. My brother Tony is here for the weekend to help Jerry with field work. Jake
enjoys having Uncle Tony sleep over.
Today is suppose to be another cool day..highs only in the 40's. We will have
to find some things inside to do to keep us busy. We are hoping that Jake will
be able to attend preschool for the entire week. His class has a field trip this
Friday to our local airport to see a charter plane and airplane hanger. I can't believe
that his last day of preschool is May 29th. Summer will be here before we know
it. Well, maybe not in Wisconsin!!
Thank you for keeping Jake in your thoughts and prayers. As always, we enjoy
the many thoughtful, heartfelt journal entries. We are blessed to have so many
people who love our son. We will keep you informed about our treatment options
for Jake. Please pray for God's continued guidance in our lives.
We hope all of you have a wonderful weekend.
Love, Natalie Jerry and Jake

Friday, May 17, 2002 at 02:56 PM (CDT)

I would love to tell you all that things have finally calmed down in the Peters'
household, but that is only wishful thinking. I think my last journal was on
Wednesday while Jake was getting platelets at the clinic. We didn't leave the
clinic until after 7 pm that night because once again, Jake's central line was being
difficult. It began leaking again and the nurse was have alot of difficulting drawing
blood from it. We managed to get it working and we called it a day.

Jake attended preschool again on Thursday and Gramma Dee was able to be the
"parent helper" for the second day in a row!! Jake was thrilled. I was able to
work a full day on Thursday and when I arrived home around 4pm it was time to
give Jake his iv antibiotics. I hooked up the antibiotic tubing and proceeded to
do some things around the house. I went to check on Jake about 15 minutes later,
and the front of his shirt was wet with antibiotic and blood. The central was leaking
AGAIN!! I think I finally snapped!! I called the clinic and told the nurse that I was
bringing Jake right over to repair the line. I believe this is the sixth repair since
February. We are so grateful to Julie and Lori for staying late at the office to repair
the line. We didn't get done until almost 7pm. Jake's line has not been accessed
since 5 pm last night in order to allow the glue on the repaired piece to dry completely. That posed another dilemna...how to give Jake his iv antibiotics and
iv contrast and radioactive isotope for his PET and CT scans today. We decided
that he would have to miss Thursday evening and Friday morning's doses of antibiotics. We told Jake that we would have to put a peripheral iv in his arm this
morning before his PET scan. Jake was not at all thrilled with that idea.
We needed to be at the clinic at 7:15 am this morning to start the iv. Jake was
tired, scared and crabby which makes for a great combination when you are trying
to stick a needle in his arm. He cried, but overall he was very brave and did a great
job. The iv stayed in his arm until the tests were done. We got home around
1:00 pm today. I have to say that I have had my fill of the clinic this week. Tuesday was the ONLY day that we did not have to be at the clinic/hospital. We
are hoping for a fun weekend free of clinic visits.

Now for some good news. Jake's urine catecholamine levels came back and they
are lower than the levels in April. His VMA has dropped from 37.2 to 30.3 and his
HVA level has dropped from 38.7 to 26.2. These levels are not in the normal range, but are hoping that this means that Jake's disease has stabilized. His head CT scan results are NORMAL and we are waiting for the final PET scan results from Dr. Brandt. We are going to pass the results of Jake's studies on to Dr. Russell
in Texas to see if Jake is eligible to start the vaccine therapy, and we will also consult with Dr. Kushner in New York to see if antibodies might be the best therapy
for Jake at this time. Our hope is that he can have a break from chemotherapy.

Jake is getting ready for his first tee ball game tonight. It starts at 5:00 and he
is very excited. He has his shirt, pants, hat and new cleats all ready to go. He is
so cute, he asked me if I could bring him to the ball diamond early so he could
practice!! He can't wait to run "real" bases. We want so much for him to enjoy
tonight...he deserves it after the rough couple of weeks he has had.
More later.
Natalie

Wednesday, May 15, 2002 at 03:38 PM (CDT)

Jake was able to go back to preschool today.
He was very excited and his teachers and
classmates were thrilled to have him back.
Gramma Dee was able to be the "parent
helper" today. I don't know who was more
excited, Jake or Gramma. Jake's preschool
class missed him so much that they made
him a blanket with each of their names on
a square. Each child and the teachers drew
bugs on a square and printed their names.
It is beautiful. What a touching momento
of Jake's year at St. John the Baptist preschool. Jake is going to bring the blanket with him for all of his hospital
and clinic visits. We want to thank the
class from the bottom of our hearts for such
a thoughtful gift.
We are at the clinic getting platelets.
His platelet count today was 12,000. His
white count and ANC continue to rise.
Jake and Gramma Dee are playing wrestlers.
Jerry is taking advantage of the nice weather today and trying to catch up with
field work. They are behind this year because of the rain and wet fields.
We are hoping that the nice weather continues through the weekend so that we
can spend some time outside.
We have not gotten the results of Jake's
urine test, we hope to have them by Friday.
Keep praying for favorable results.
Take care, Natalie Jerry and Jake

Tuesday, May 14, 2002 at 07:39 PM (CDT)

Jake enjoyed his first full day out of the hospital. He is feeling a little tired, but
otherwise he is doing well. His platelet count is a low 17,000 today so we will
be transfusing tomorrow.
Gramma Dee arrived this morning and they played all day. First they played the
game Guess Who, then they did a puzzle, played baseball outside ( Jake had
20 runs) and watched a wrestling video. After dinner Jake was able to ride on
the lawn tractor with Jerry and he was even able to drive the lawn mower himself
for a bit. Jake loves being outside.
We finally bought Jake a wooden swingset with the fort, sandbox and swings. Now
comes the fun part...figuring out where in the yard to put it and then putting it
together. Jake is very anxious for it to be assembled.
I am happy to say that things are pleasantly quiet and uneventful here. It is a nice
change of pace.
We hope all of you are well.
Take care, Natalie Jerry and Jake

Monday, May 13, 2002 at 08:53 PM (CDT)

Jake was discharged from the hospital today...not a day too soon!! He was
beginning to drive everyone crazy. He has so much fun in the hospital that I feel
guilty because there are actually SICK children there. Jake has the nurses all
wrapped around his finger and the volunteers as well.
I forgot to update everyone on the most exciting news. Jake lost his first tooth
yesterday...what a great Mother's Day gift. He was so excited to put it under his
pillow for the tooth fairy. We wrote a note and asked her to please not take the
tooth since it was his first one and she was happy to oblige. As with everything
else, Jake got spoiled by the tooth fairy!! Jerry and I thought that $1.00 was a
reasonable leaving, but the night nursing staff felt otherwise. They chipped in
and left three 1 dollar bills, 4 quarters, 5 dimes and 3 nickels. In addition, they
left him a hand held Mickey Mouse Yahtzee game and mazes, puzzles and stories
all about the tooth fairy. Nothing like showing up old Mom and Dad. Jake was
thrilled when he woke up this morning and checked under and around his pillow.
You might have thought it was Christmas. We want to thank Kim, Ruth, Tammy
and all of the nurses for their kindness and generosity and thank them for helping
to make this momentous occassion even more memorable. I hope they realize
that they have started a tradition...one tooth down, many more to go!!!
Jake had his follow up chest ct scan today and the results show improvement
in the pneumonia on his right side. The doctors believe that it was bacterial
rather than fungal. Jake will be getting both Cefepime and Tobramycin antibiotics
every 8 hours through Sunday the 19th. He will also continue with the Neupogen
as an iv dose, and Diflucan orally. It is great to be home, but our refrigerator looks
like a medicine chest. Jake enjoyed having dinner at home tonight and taking
a shower. He watched wrestling (of course) and is playing catch with Dad in
the living room. I just got a call from his tee ball coach informing us that the
season starts this Friday!! I'm sure Jake wants to get alot of practice in before then.
Jake's counts continue to rise. His white count was 1.9 with an ANC of 1464.
He should be able to return to preschool tomorrow.
We were so proud of Jake today!! I had a doctor's appointment scheduled for
myself that I could not change and it happened to conflict with Jake's scheduled
time for his chest CT. Our dear friend Peggy Warwick was coming to the hospital
this morning to stay with Jake while I was at the appointment. She was kind enough to go with Jake for his ct scan. Jake was a little anxious about the fact
that Jerry or myself were not going to be there, but he said he would be "ok." This
is the first time in 22 months that he has had any type of test or procedure without
one of us being there. I knew that the scan would not last long, but it still felt
strange not being there. When I returned to the hospital, I was told by the CT
technicians and by Peggy that Jake did an AWESOME job!! He laid perfectly
still like he always does and didn't seem to mind that we were not there. Peggy
was also very proud of him...I think Jake was proud of himself. He has grown
up so much in the past 2 years.
Gramma Dee is coming to visit tomorrow. She is going to stay through Thursday.
I am so glad that Jake is feeling better so that they can enjoy their time together.
Now that Jake is home and feeling better, I hope to catch up with this website.
I have new photos from his birthday etc that I need to add. I will let you know
when I have them added.
Thank you all for your prayers. They have once again helped all of us through
a difficult time.
Love, Natalie Jerry and Jake

Sunday, May 12, 2002 at 05:08 PM (CDT)

First, we would like to wish all of the
moms, grandmoms and stepmoms a very Happy
Mother's Day! We hope all of you get to
enjoy the day with your families.

Jake is doing great. His white count is up
to 1.4 and is ANC is 1146. It is just too
bad that he is couped up in the hospital.
He told me today that he is BORED!! I know
that he is ready to go home. We are spending a nice Mother's Day together. Jake
made me a beautiful heart pin, a card and
flower on a tongue depressor to use as a
plant stake. I can't tell you how much I
treasure them. Jake is disappointed that we
have to spend Mother's Day in hospital because he didn't have a chance to go shopping for a gift for me. He is too young
to understand just how much this and every
Mother's Day means to me. I am so blessed
to have my son here and feeling well...that
is the TRUE gift.
We are having a pizza party for dinner in
his room tonight. Gramma Clarie, Grandpa
Jerry, Aunt Terri, Uncle Mike, Jerry, Jake
and I will be celebrating Mother's Day
together.
Jake will be having a chest CT scan done
tomorrow and if it has improved since the
last one on Wednesday, we will be able to
go home in the afternoon. Our hope is
that Jake will be able to go back to preschool as soon as Tuesday. He has not
been able to attend since April 12th. Their
last day of school is May 29th, so we are
anxious for him to be able to participate
in the last couple of weeks.
We will update everyone tomorrow on the
results of the CT.
Take care,
Natalie, Jerry and Jake

Friday, May 10, 2002 at 04:11 PM (CDT)

Sorry to keep everyone in suspense!! Jake
is doing GREAT!!! He is back to his normal
self. He woke up yesterday feeling good
and had no pain at all. He was very playful
and energetic. He spent time with Gramma
Dee playing with wrestlers, doing mazes and
dot to dot. Gramma Dee enjoyed her visit
with Jake and was a great help to us. She
is coming back for a few days next week
and Jake, Jerry and I are looking forward
to here stay.
Gramma Clarie came to spend a couple of
hours with Jake yesterday and they played
with his baseball guys and wrestlers.
Jerry was able to spend the night with Jake
and they both enjoyed cuddling in bed
together. I came to the hospital this
morning so that Jerry could get back to the
fields. Jake is feeling even better today.
His ANC has reached a whopping 456 and his
white count his up to .6! This means that
his body can help to fight the pneumonia
along with the antibiotics. He is still getting Diflucan (anti fungal), Neupogen
to raise his white count and three antibiotics...Cefepime, Tobramyacin and
Vancomycin. Jake had a reaction to the
Vancomycin today called "red man syndrome."
It is a rash that starts on the head and
travels down the face and neck. It makes
his head very warm and itchy. This is a
common reaction and is easily treated with
a dose of iv Benadryl. The doctor wrote
for Jake's Vancomycin to be infused over
two hours rather than 1 hour and for him
to be pre medicated with Benadryl. The
rash cleared right away, but the Benadryl
put him to sleep for the past 2 hours.
I hate to admit it, but I was grateful for
the break. When Jake is feeling well, he
wants to play, play, play! Gramma Clarie
is here now, so she can take over when he
wakes up.
Jake will remain in the hospital through
Monday pending the results of the chest CT
scan which will be run on Monday. If the
results are favorable, we will go home
on iv antibiotics for the remainder of the
week!
Jake's urine catecholamine sample was
taken yesterday and now the long, agonizing
wait begins for the results. The urine
sample is sent to an out of state lab and
the results take about a week. We are
hoping that his VMA and HVA levels have
decreased since the last sample taken on
April 15th. If they are continuing to
rise, than the evidence points to progressive disease that is resisting chemo.
If the levels have decreased, than we will
be able to move forward with either his
vaccine or possibly the antibody treatments
in New York. We are praying that the levels
have decreased.
We want to thank all of you for your
added prayers this past week. We know that
Jake's quick and dramatic recovery was due
partly to the power of prayer and do his
strong will.
Please continue to pray for Jacob's recovery and for favorable results from the
urine tests.
Have a great weekend.
Love, Natalie Jerry and Jake

Wednesday, May 08, 2002 at 08:22 PM (CDT)

We wanted to let everyone know that we
rushed Jake to the hospital last night with
severe side and abdominal pain. He hadn't
seemed like himself for the past few days.
He started with pain around 7:30 pm last night and within an hour, he was writhing
in pain and crying and screaming. We have
NEVER seen Jake in so much pain. We were
not sure what was causing it. We got to
the hospital and the nurses and doctor worked very quickly to make Jake comfortable. They did a chest and abdominal xray and they showed nothing out
of the ordinary. They started Jake on three
antibiotics...one broad spectrum (Cefepime)
one anit bacterial and one anti fungal to
cover a myriad of infections.
The doc ordered a chest, abdomen and pelvic
CT scan this morning and we found that Jake
has pneumonia in the upper right area of
side. We are waiting for the blood cultures
to come back to determine if it is fungal
or bacterial pneumonia. Jake slept well
last night after getting 2mg of Morphine,
fluids and getting the antibiotics on board.
He still has sporatic bouts of pain but feels much better today.
We did get some good news...we asked the
doctor that since he was doing the ct scans,
to please review them to see if there was
any neuroblastoma present and there is not.
We are thrilled that Jake's chest, abdomen
and pelvis are still showing clear of
cancer. We hope to move forward with the
rest of the tests next week. We hope that
the pneumonia will not set us back.
Jake's counts are on the rise which you
hopefully help him fight the pneumonia.
He had a platelet transfusion last night
and a red blood cell transfusion today.
His ANC is 190, white count .3, platelets
100. Please continue to keep us in your
prayers. Jerry and I were truly shaken by
the events of last night. It was throughout
this entire ordeal that we saw Jake in pain
and did not have a reason why...We felt so
helpless.
I will update you daily on Jake's progress.
Natalie, Jerry and Jake

Tuesday, May 07, 2002 at 05:12 PM (CDT)

I am sorry that I have been falling behind on my journaling. Things have been very
busy around here. Jerry is working long hours and so Jake and I are on our own
most of the time and we are still doing iv antibiotics every 8 hours and the other
meds. That is no excuse for me not to journal!!! I will try to catch you up on
things.
Jake was able to ride with Jerry in the tractor on Sunday and help plant corn. He
spent about 2 hours with Dad and he had a great time. He packed himself a snack
and brought a wrestling figure to "keep himself busy." He loves to help on the farm
and the tractor they used has it's very own seat for Jake.
Monday Peggy came and visited while I went to work. They played baseball outside, opposites dominoes and wrestlers.
Jake's counts are okay. His white count is at .2 with an ANC of 120. His platelet
count and hemoglobin are dropping and we are scheduled for transfusions tomorrow.
We will be spending the entire day at the clinic. Gramma Dee arrived last night
and she and Jake have been playing since she got here. I was able to work all
day today while they spent the day together. They went for ice cream at Diary
Queen ( the drive thru of course) and ate their ice cream outside. They played
Bob the Builder memory and Jake won by a landslide.
I was able to speak to Kris Kerwin today and wanted everyone to know that they
are doing well. She apologizes for not having updated Cameron's website, but she
is very busy writing out over 600 thank you notes. Kevin returned to school last
Wednesday and Kris has been keeping very busy. They wanted to thank everyone
for the thoughtful cards and they were so touched that our "extended family" has
reached out to them. They appreciate the kind words of love and support. We hope
to be able to get together with them soon.
We have not done Jake's urine test yet. We hope to have that done soon since
the results take a least a week. We are still exploring any and all treatment options available in the event that Jake's disease has progressed. Thank you all for
your concern. We promise to keep you informed every step of the way.
I apologize if my lack of entries worried anyone.
Take care. Natalie, Jerry and Jake

Monday, May 06, 2002 at 08:50 AM (CDT)

I did not realize that my last journal entry was Thursday. I apologize for the delay.
Jake is doing fine. We are checking his blood counts today and hope that his
ANC will soon reach 500. We are still doing iv antibiotics 3 times a day, neupogen
by iv once a day, diflucan orally once a day and the peridex mouthrinse twice a
day. I guess I know now why I haven't journaled since Thursday.
Jake had a good weekend. His brother Ben came over on Friday afternoon to
play with him. They built small ramps in the driveway and Jake rode his bike over
them while Ben skateboarded over them. Thank goodness Jake's platelet count
was high. On Saturday, Alex came over for a few hours while I did some much
needed grocery shopping. Jake and Alex played baseball and nintendo. It was
great to have Alex and Ben help out. With Jerry busy doing field work and Jake
unable to go out in public, I was able to run some errands thanks to the boys.
Peggy is coming over today to visit with Jake while I work. Gramma Dee is coming
tonight and she is staying until Thursday. Jake is so excited. We are all looking
forward to her visit. I hope Jake doesn't wear her out!!!
We hope to be able to have Jake's urine tested this week to get some answers
regarding the status of his disease. We are desperately hoping that the last urine
results were high due to some error or something other than neuroblastoma that
could have so dramatically affected the results. We can't make plans for our next
step until we have all of the results. Please pray that Jake's disease has lessened
or stabilized so that we may proceed with either his vaccine or antibodies. We
hope and pray that we can give his body a rest from chemotherapy.
I hope to post some recent photos later this week. I will let you know when they
are up.
Thank you for your prayers. We need them now more than ever.
Love, Natalie Jerry and Jake

Thursday, May 02, 2002 at 04:39 PM (CDT)

Sorry that I missed yesterday's update.
We spent 6 hours yesterday at the clinic
for a red blood cell transfusion. Today
Jake needed platelets, so hopefully he
will be "beefed" up for the weekend. His
white count today is 0.2 and his ANC has
hit the double digits....40. We are headed
in the right direction.
Jake was able to spend some time yesterday
with his Gramma Dee and Grandpa Russ. They
had planned on coming to our house, but we
got called to clinic instead for the transfusion. Gramma Dee is coming to spend
a few days next week with Jake and they
are already planning what they will play.
We are hoping that his counts recover quickly so that he can return to preschool.
Have to run... more later.
Natalie

Tuesday, April 30, 2002 at 07:58 PM (CDT)

JAKE IS HOME!!!! He was discharged this afternoon and I have never seen him
so excited to be home. This hospital stay of 7 days has been the longest in
months. Gramma Clarie spent the night with Jake last night so that I could leave
early for a meeting in Madison. It was so strange being away from Jake after
having spent so much time with him during this hospital stay. I missed him so.
I called him on my home from Madison and he was having so much fun playing
at Gramma's house, but couldn't wait to get HOME. I returned from Madison
around 6:45pm and picked him up at Gramma's. I got one of his biggest and best
hugs ever!! He kept telling me how good it feels to be out of the hospital. We came
home and the first thing Jake did was run through the entire house making sure
everything was just where he had left it. He always takes an inventory of his toys
and digs right into playing. He jumped on the beds and opened the toy closets.
He truly appreciates HOME and all that he has here. He told me that he wants
to cuddle up on the couch tonight with mom and dad and snuggle close. We can't
wait. How blessed Jerry and I are to have our son home with us and we appreciate
and cherish the moments we spend with him.
Jake's white count and ANC are beginning to show signs of slowly creeping up.
His hemoglobin is down to 7.6 and platelets are 46,000. He will probably need
a red blood cell and platelet transfusion by the end of the week. We need to continue to watch for fever or chills, because he is still so susceptible to infection.
Several of you have asked me how Cameron's parents are doing and honestly
I have not talked to them since the funeral. I hope to call them in the next few days.
Kris is going to continue to update Cameron's website and that address again is..
www.caringBridge.com/wi/cameronkerwin. Their home address if anyone would
like to send their condolences is Kris & Kevin Kerwin N65W15245 Blue Heron Dr.
Menomonee Falls, WI 53051.
That's all for tonight...I am anxious to go upstairs and cuddle with Jake.
Take care,
Natalie Jerry and Jake

Monday, April 29, 2002 at 07:11 PM (CDT)

Jake is being discharged from the hospital tomorrow. His counts are still
low...ANC- zero, hemoglobin- 7.9, white count 0.1 but he continues to feel great.
He will come home with iv antibiotics and we will administer them 3 times a day
until his ANC reaches 500. He has been having fun in the hospital. Peggy came
to visit him for 3 hours today and they played the entire time. They played NFL
checkers, the board game guess who and army guys. They both had alot of fun.
Thanks Peggy for taking time out of your busy life to be with Jake. It means so
much to all of us.
Dr. Brandt returned today from his conference in Florida. He attended a seminar
regarding treatments for Neuroblastoma. He told me that unfortunately, nothing
earth shattering was discussed. We are aware of most of the treatments out there.
We hope we can find the right one for Jake. We will be testing his urine
catecholamine levels ( VMA/ HVA) in a couple of weeks and we will decide our
next step from there. We truly hope and pray that the levels from 4/15 were
some kind of error or maybe an indication that tumor cells were breaking up and
leaving through the urine. We are remaining hopefully optimistic. There are more
therapies available to Jake if he has less or stable disease rather than progressive
or resistant disease. We know we have asked for your prayers before, but once again we find ourselves at the all too familiar, all too nerve wracking crossroads and we need strength and guidance to choose the path that is right for Jake. We are
so fortunate that Jake continues to feel GREAT!! He has not experienced any
pain or discomfort, so if the disease is growing, it's not slowing Jake down.
Thank you all for your love, prayers and support. We need it more than ever in the
upcoming weeks.
Love, Natalie Jerry and Jake

Sunday, April 28, 2002 at 06:45 PM (CDT)

Jake is still inpatient, but feeling fine. He continues to be free of fever and the
blood and urine cultures remain negative. The doctors feel that they want to keep
Jake in the hospital for the conclusion of his 6-7 day iv antibiotic course.
Because Jake's bp was very low at time of admission and because his temp rose
and he presented with the "chills" about a 1/2 hour after they started the antibiotics
on Wednesday, the docs believe that some sort of bacterial infection was present
in his body. He has responded very well to the broad spectrum antibiotic and that
is encouraging. Doctor Sach will feel more comfortable discharging Jake once
his ANC shows signs of rising so that if there was an infection, he would have
some ability to fight it on his own. This has been Jake's longest hospital stay in
quite awhile, but we respect and understand the doctor's concerns. The last thing
we want is to bring Jake home and have him become ill. We are keeping him
busy and we appreciate the volunteers who have come by and played games with
Jake and done some painting and crafts with him.
Jake's counts today are still low....white count is less than .1 with an ANC of
20. His platelets are holding steady at 83 since yesterday's transfusion and his
hemoglobin is 7.9. We are praying for a jump in his ANC and hoping he will come
home by Tuesday.
Take care,
Natalie, Jerry and Jake

Saturday, April 27, 2002 at 08:55 PM (CDT)

Jake remains inpatient. His ANC is still
zero and his white count is less than
0.1. He needed a platelet transfusion today
so he slept for about an hour due to the
Benadryl. Otherwise, he is feeling fine.
He continues to play with wrestlers, color,
watch videos and play with this Leap pad.
His appetite is increasing as well. The
blood and urine cultures continue to be
negative. We are just waiting for some
sign that his white count is recovering.
We hope to go home some time tomorrow.
Have a good weekend.
Natalie

Friday, April 26, 2002 at 09:15 PM (CDT)

Jake is doing very well. He is still in the hospital, but has not had a fever since
late Wednesday night and the cultures continue to be negative. His blood counts
however are still very low. His white count is less than 0.1, his ANC is ZERO.
He is still full of energy and wanting to play all day. Thursday was an exciting day
for Jacob. He made two new friends. Two St. Norbert's college students who
volunteer at the hospital, Drew and Travis came by to spend some time with Jake.
Drew came by in the morning and Jake really enjoyed playing with him. When
Drew saw that Jake was huge WWF fan, he said that he would send his roomate
Travis by who also likes wrestling. Jake could hardly wait for Travis to get there.
He came at 2:00 and stayed until 5:00. They watched wrestling videos and played
with the figures that Jake had at the hospital. Jake was thrilled and impressed that
Travis knew all of the wrestler's names...I think Travis was equally impressed with
Jake. We want to thank them both for their gift of time. They made Jake smile
and made his time in the hospital more bearable. We admire and appreciate
their committment to the hospital and the time they take out of their own lives to
be with sick kids.
We are hoping that Jake can come home later Saturday. He will have to continue
on iv antibiotics, neupogen to boost his white count, diflucan (anti fungal) and the
peridex mouthrinse. It has been a very long week for us and it will be nice to all
be at home.
We wanted to update you on Alex's condition. He had a hearing test and CT scan
this week. The ear doctor said that Alex has regained some of his hearing back
in his left ear and there is no more fluid present. He feels that Alex's hearing in that
ear will never be 100%, but he may regain more of it in the days to come. The
CT results were encouraging. The clot in Alex's head has partially dissolved and
Alex should be able to return to normal activities within the next 3-4 weeks. We
are thankful that he is improving.
We want to tell you a little about Cameron's wake and funeral on Wednesday.
It was a beautiful, emotional and sad evening. When we arrived around 5:00 pm
the funeral home was busy. So many people came to pay their respects and to
comfort the family. Both Kris and Kevin are teachers and have many friends that
care very deeply for them. The funeral home was filled with pictures of Cameron,
scrapbook pages, flowers, balloons and many of his treasured possessions. All
around there were touching reminders of this precious boy's short time on earth.
There were several pictures of Jake and Cameron together depicting the many
happy times they shared together. We are touched and honored that Jake holds
such a special place in their hearts. Kris and Kevin were very strong the entire evening. We marveled at their strength. They told us that they felt comforted by the fact that Cameron was now at peace and safe in Jesus' arms. We know how much
they will miss him and that their loss is unimagineable, but they will carry his love
in their hearts forever. Jerry and I were touched by the number of people who
knew who we were and offered us their thoughts and prayers for Jake. Michael
Naselli's family attended the service as well. We appreciate how difficult the
evening was for them. Please continue to remember both of these families in your
prayers. We pray that they find the strength and courage to cope.
At the service, Cameron's mom Kris gave us a package for Jake. The bag
contained Cameron's John Deere cap and his John Deere bank. Cameron had
wanted Jake to have them. We are deeply touched and Jake is so happy to have
something of Cameron's. We will treasure them.
We hope all is well with all of you. We want to thank you again for your
thoughtful guestbook entries and for keeping Jacob close in your thoughts and
hearts.
Love, Natalie Jerry and Jake

Thursday, April 25, 2002 at 09:25 AM (CDT)

I have so much I want to journal, but very little time right now. A quick note to let
you all know that Jake was admitted around 8 pm last night with a temperature
of 101.5. His counts are very low, but he is in great spirits. Gramma Clarie and
Aunt Terri brought him to the hospital while Jerry and I were attending Cameron's
wake and funeral service. I will post more on our evening later.
I guess Jake was full of energy despite a temp and low blood pressure. The nurses
on duty asked Jake why he was even there, since it was obvious that he wasn't
acting ill at all. His blood pressure was being monitored every 10 minutes until
it was under control. The doctor feels that it was due to a lack of fluids. Once
the iv ran for awhile his bp stabilized. They did the usual drill, blood cultures,
urine cultures, cbc and began iv antibiotics. Dr. Sach ( Dr. Brandt's partner) says
that if the cultures are negative within 48 hours, Jake will be able to come home.
I will try to journal more later and tell you about the beautiful service for Cameron.
Take care.
Natalie

Tuesday, April 23, 2002 at 10:45 AM (CDT)

It has been an emotionally exhausting few days for us. I find my thoughts
wandering to dear, sweet Cameron. I know that he is happily free from pain and
his cancer beaten body but I can't help but morn for what might have been.
We have not told Jake yet and the thought of that is weighing heavy on our minds
as well. We know that he will be very sad and that he needs to feel that sadness,
but no parent wants to see their child in pain..either physical or emotional.
Yesterday was a long day at the clinic, but Jake feels "charged" from his platelets
and red blood cells. One bright spot in our day was that we were able to share
in a small celebration at the clinic for Dr. Brandt's birthday.
We received the results of Jake's latest urine catecholamine test which was taken
on April 15th and the news was not what we had hoped. Jake's VMA level has
soared from 15.1 to 37.2 and his HVA from 17.7 to 38.7. These are well above
normal range and indicate that the disease his becoming resistant to chemotherapy.
We have experienced setbacks before, but this came at such a difficult time with
the recent losses of Cameron and Michael Naselli. Please be assured that Jake
is fine...he feels great and is his normal energetic self. We will be taking the
next few weeks while he recovers from chemo to review all of our options and we
do have options. We are not giving up and we will continue to battle this disease
with God's guidance and Jake's strength.
Thank you for remembering Cameron's parents and family in your prayers. Tomorrow is going to be a very difficult day for all of us. As always, your continued
love and support are a constant source of strength for us.
Love, Jerry Natalie and Jake

Monday, April 22, 2002 at 03:11 PM (CDT)

Jake's counts were very low today....white
count 0.1, platelets 20,000 and hemoglobin
6. We are at the clinic getting both blood
and platelet transfusions. Jake woke up
very tired and lethargic today, so we knew
something was up. The Benadryl made him
sleep for the first two hours that we were
here and now he is watching a wrestling
video. We haven't told him about Cameron
yet, but I think he senses our sadness. We
will sit with him tonight and tell him.
I guess that's all for now. I will journal
more later.
Natalie

Sunday, April 21, 2002 at 08:06 PM (CDT)

It is with great pain and sorrow that I have to inform everyone that Jake's
little buddy Cameron passed away early this morning. We spoke to his mom,
Kris last night and she shared the news that Cameron was not doing well. He had
begun a new chemotherapy on Friday, but he was having difficulty breathing.
They did a chest xray and found that his little lungs were filling up with fluid due to
the neuroblastoma in his lungs.
His parents and doctors decided that to continue with the chemo would not benefit
Cameron and would make him much sicker. Kris told me last night that there
was nothing more that they could do and their hope now was that God would
take Cameron quickly and peacefully. We are all thankful that it happened exactly
that way. Cameron was surrounded by his loving parents and family. We can
find peace and comfort in the knowledge that Cameron is now safe in the arms
of Jesus. We know that he is free from pain and suffering and hope that he is
experiencing a joy beyond our wildest dreams. Cameron was 3 1/2 years old and
like so many of the other children with cancer, he was wise and brave beyond his
years. We will miss him terribly and feel honored to have known and loved him.
Please keep Kris, Kevin and the rest of Cameron's family in your prayers. We
can not fathom the pain that they are feeling now.
We have not decided if and when to tell Jacob. It was just last weekend that
Cameron was here for Jake's birthday. We knew that he wasn't himself, but he
bravely tried to have fun for Jake's sake. He insisted on coming to Green Bay
for Jake's party....what a wonderful gift he gave to us all.
Jake is doing fine. We will be checking his counts tomorrow.
Love, Natalie Jerry and Jake

Friday, April 19, 2002 at 12:33 PM (CDT)

Today is the last day of outpatient Irinotecan. We will be going to the clinic
around 3:00pm for the infusion. Jake has not had any more episodes of vomitting
or diarrhea since Wednesday evening. He continues to take Zofran every 4-6 hours
but we have discontinued the Loperamide for diarrhea. Jake's appetite has not
yet returned to normal, but otherwise he is feeling fine. Jake will begin taking
neupogen tomorrow to raise his white count. We have decided to give it to him
in the iv form in his central line rather than the injections in his legs. He had to
have so many doses of it with the last round of chemo ( 25 of them) that we don't
want to beat up his poor little thighs with that many shots. Needless to say,
Jake is excited about not having to get "stuck" although he always handles like
a champ!! He is also taking Diflucan (anti fungal) and continuing with the Peridex
mouthrinse twice daily. As long as we can be at home, it all seems manageable.
We heard that Cameron is starting chemo tomorrow. He will be receiving the
same chemo combo as Jake. We hope and pray that this is the combination that
will have some positive impact on Cameron's disease so that he may move
forward with other therapies. His parents are praying for God's guidance to make
the best decisions for Cameron. We sympathize with them and know all too well
the pain of their situation. Thank you for remembering them in your prayers.
We hope to be able to get some things done around the house this weekend.
Jake and I want to hang bird feeders in the yard and enjoy the outdoors.
Thank you all for the wonderful, thoughtful birthday greetings and guestbook entries.
As always, we know that Jake is close to your minds and hearts. We are eternally
grateful.
Natalie, Jerry and Jake

Thursday, April 18, 2002 at 04:16 PM (CDT)

Jake was discharged from the hospital at
6:00 pm yesterday. He was anxious to go
home. This round of chemo has been a little
more difficult for him. He is experiencing
nausea, vomitting and diarrhea. These are
very common side effects especially with
the chemo Irinotecan. We are giving him
Zofran(anti nausea) every 4-6 hours and
we gave him two doses of Loperamide at the
onset of the diarrhea. So far today, things
seem to be better. We are currently at the
clinic receiving his outpatient dose of
Irinotecan. He is watching the video Toy
Story...one of our favorites. He is not
his energetic self, but that is to be expected. Hopefully, we will get through the next few days without Jake feeling too
ill.
The weather is still unseasonably warm in
Green Bay but not for long. We should be
returning to normal temps in a day or two.
I got the itch to take Jake miniature golfing. I was hoping to take him tomorrow,
but wouldn't you know that's when it is
suppose to cool off. Jake loves to miniature golf and he can't understand why
we can't go all winter!!! There's a business opportunity, an indoor miniature
golf course.
We received an update from Kris and Kevin
Kerwin. (Cameron's parents) The abdomen
and chest CT that Cameron had done on Monday
shows that the disease is not responding to
the current chemotherapy treatment. Cameron
will be starting a new chemo today. We
would greatly appreciate you keeping Cameron
and his family in your prayers. They need
our support, love and prayers during this
difficult time. If you would like to keep
informed regarding his condition and see
recent photos, he has a website as well at
www.caringBridge.com/wi/cameronkerwin.
As always, thank you dear friends and family
for your love and support for us. It gives
us strength everyday.

Tuesday, April 16, 2002 at 11:00 PM (CDT)

Chemo day 2 ran much smoother than day one. We had problems with Jake's
central line yesterday and last night which was frustrating for us all, but the nurses
seem to have resolved the problem today. Jake is feeling fine. He has been
keeping busy watching movies, doing workbooks, playing with his wrestlers and
with some of his birthday toys. If all continues to go well, we will be discharged
early Wednesday evening.
Jake's counts are already dropping. His ANC is already down to 440, but his
platelet count rose from 48,000 to 60,000. I think he is going to bottom out much
quicker with this round.
Alex is doing better. He continues to have headaches and is experiencing some
dizziness that the doctor said to expect. We are hoping and praying that he
gets stronger with each day.
I'm going to make my post short tonight and catch up on my sleep.
Goodnight,
Natalie

Monday, April 15, 2002 at 10:45 PM (CDT)

Well, it's almost 11pm and I am finally sitting down to finish telling you about
our wonderful, exciting, scary weekend. Jake's kids party was a huge success.
I want to thank Jake's brother Ben and our friend Nicole Warwick for their help..
I could not have done it without them. Jake kept telling us that it was the best
most wonderful birthday party in the entire world!!! How will I top that next year?
Now for the scary part of our weekend. Saturday while Jake's party was going on,
his big brother Alex was playing in a high school baseball double header game.
Alex and another player collided in the outfield and Alex was seriously hurt. We
found out the details late in the afternoon after they had rushed Alex to the hospital.
He was bleeding profusely from his nose and ear and he lost consciousness for
a short period of time. He spent 2 days in the Neurology ICU at St. Vincent's
Hospital under close observation by the Neurology team. Alex has two skull
fractures which the doctor feels should heal with time, but more serious is that
they found a small blood clot between his brain and skull that showed up on a head
CT. The neurosurgeon said that if the clot enlarged he would have to operate.
Thankfully, the CT scan on Sunday showed no swelling in the clot. Alex was
discharged today and he stopped by the 10th floor to see Jake on his way out.
The doctor feels that the clot should dissolve in time and they will do another
CT scan next week. Alex is on pain medication for his terrific headaches, but
he was very anxious to go home. Please keep him in your prayers as well.
Jake's party on Sunday was alot fun, although we all missed having Alex here
to help us celebrate. Our home was filled with so many people who love and
care for Jake and who's lives he has touched. We ate pizza, cake and ice cream
and then of course it was time for presents. Once again, Jake was extremely
spoiled by all of the generous gifts. He loves everything and we want to thank
all of you for your thoughtfulness and generosity and most of all for celebrating
with us. At one point in the evening, we viewed a home video from the Warwick's.
It was a brief video of Jake and Peggy (a grown woman) wrestling in their living
room. Jake was the Rock and Peggy was Hulk Hogan. The movie was a riot.
Jake was his usual rough and tough self, showing Peggy NO MERCY!!! And
all along we thought Jake was spending quality "learning" time with Peggy...the
truth is out. The video is priceless...it captures Jake's personality, determination
and sense of humor. Everyone enjoyed it!!! We finished the night with fireworks.
Jake was cheering and screaming with each one that was lit. It was a beautiful
night and we thank everyone for staying and sharing the fireworks with Jake, it
meant so much to us to see him so happy.
Jake finally fell asleep at 11:45 last night..he could not stop chattering about his
"best birthday and best weekend ever." Thank you to everyone who helped to
make it a memorable birthday for Jake and for us.
As I am typing this, Jake is lying in his hospital with dad while his chemo is
infusing so we are especially grateful that he enjoyed his weekend. As I always
say, he deserves every minute of fun and happiness he can get.
More tomorrow.
Natalie

Monday, April 15, 2002 at 09:42 AM (CDT)

What a wonderful weekend!!! I wanted to
find time to journal this weekend, but the
days just flew by. Saturday was a glorious
day. The weather was perfect and Jake's
party was terrific. The boys began to
arrive around 2pm. We had them sign their
names on Jake's birthday banner. The first
game we played was pin the tail on the
donkey. I was so impressed that most of the
boys were so close, until Jake confessed
that he could see through the blindfold!!
We then moved on to a relay race. We formed two teams and had the boys walk backwards until they reached a pail and then
run back to the line and tag the next person. They were so cute....walking backwards must be a skill that develops after the ages of 4 and 5. The kids were
so happy to be together and playing outside.
Next was the pinata...what a hit that was.
Each boy had three tries at breaking open
the pinata. Finally, Jake's big brother
Ben had to finish the job. The boys all
dove for the candy and treats. We filled
their goody bags and then we played musical
chairs. The boys were very enthusiastic
and excited. Jake was having a great time.
We sang Happy Birthday and had cake and ice
cream. Next it was time for presents. Jake
received so many fun gifts. The kids were
so anxious for him to open their gift. To
make things fair, we spun a bottle and whoever it pointed to, that person picked
a gift from our gift basket and was able to
give their gift to Jake. It made the whole
gift opening experience fair and fun.
I am at the clinic right now with Jake
waiting to be admitted for chemo. He wants
me to "play" with him, so I will have to
journal more later. By the way, his platelets are up to 48,000 so chemo is a
"go!"

Friday, April 12, 2002 at 11:53 PM (CDT)

I forgot to add that Jake's buddy Cameron was finally released from the hospital
after 16 days!! He misses being spoiled by the nurses and having so much fun
at the hospital. His parents have created a website for Cameron.. his address
is www.caringBridge.com/wi/cameronkerwin
We are hoping that Cameron will be able to attend Jake's party this weekend. The
boys have not seen each other since December.
Thanks, Natalie

Friday, April 12, 2002 at 11:38 PM (CDT)

It is the eve of Jake's birthday party and it is as exciting around here as the
night before Christmas. Jake, Ben and I filled all of the favor boxes tonight and
we colored the birthday banner for the party. Jake can't wait!!! He keeps hugging
me and thanking me for planning this party. The weather is suppose to be
beautiful here tomorrow so I think the boys will be able to play outside. All of the
boys except one can attend and they are all excited. At preschool today they
celebrated Jake's birthday since he will not be there on Monday. The birthday
child gets to decorate a paper cake and place a paper candle for each year.
The rest of the class forms a circle around him and sings the "birthday song."
Jake got to bring the treat today and he picked mini ice cream sandwiches. The
kids loved them, but they were a little messy. The boys were all a buzz about
the party. A couple of them even spilled the beans and told Jake what they were
giving him as gifts.
I am so much more relaxed not having to worry or wonder when we are starting
chemo. I am glad that I can focus solely on Jacob and his birthday...as it should
be. I hope and pray that he has a memorable, wonderful weekend. Five years
old...where does the time go?
I will try to journal tomorrow evening and update you on the day's festivities. I must
confess, I may even be more excited than Jake!!
Good night.
Natalie

Thursday, April 11, 2002 at 10:51 PM (CDT)

Does anyone know if there is such a person as the "platelet fairy?" If so, please
send her our way. We did not start chemo today. Jake's platelets are now
33,000, stable but high enough. This past week as been very frustrating and
stressful for us. Don't get me wrong, it's not that we like chemo, it is a necessary
evil. We are always wondering what Jake's disease is doing while we are sitting
and waiting for chemo to begin!! It is such a catch-22. If we start chemo too soon,
we run the risk of Jake developing serious problems such as bleeding or becoming
platelet transfusion dependent. On the otherhand, when we aren't doing chemo,
what's killing the disease??
We have made the decision to begin chemo on Monday. Now that it is already
Thursday, starting on Friday or Saturday will only ruin Jake's birthday plans and
right now we feel that is more important. Jake is so excited and anxious for both
of his parties. We filled the pinata last night. We stuffed it to the brim. I hope
we can hang it. I had to put the fireworks out of sight so that Jake would stop
bugging me to light some. He will get to go to preschool tomorrow and we are
going to bring his "birthday treat." A family friend, Nicole Warwick is going to help
me with Jake's kids party on Saturday. I know when I'm out numbered.... 10
four and five year olds and one mom.....HELP!!!! We are hoping for a nice day
so that we can do most of the planned activities outdoors. I am starting to get
excited as well. I know that Jake will have a great time.
I hope I have enough energy left over this weekend to journal. I try to remember
all of the details.
Take care,
Natalie

Wednesday, April 10, 2002 at 09:37 PM (CDT)

What a beautiful day in Green Bay today....it reached about 62 degrees today.
I was able to be parent helper at Jake's preschool today. He gets so excited
when I am able to be there. He said this morning, "Mom, if I draw you a picture
at school, I can give it to you right away because you're going to be the parent
helper. YEAH!!!" Today they continued talking about turtles and Jake's teacher
brought her turtle, Buzz from home. The kids giggled and screeched as Buzz
crawled all over the floor and tucked his head in his shell. Trust me, with 20
four and five years olds screaming, I wish I had a shell to hide in. It is so much
fun seeing how excited little ones get over new experiences. Ah, to be young
again!!!!
The kids created a board game for their art project. They could color and decorate
the squares any way they wanted and make their own rules for their game. They
also read a book about Franklin the turtle. Jake was assigned a job today...he
was in charge of the milk. He loves that job. At snack time he gets to go with
the teacher to the cafeteria and count out the milks and bring them back to the
class. All of the boys in Jake's class are buzzing about his upcoming birthday
party. The parents have told me how excited the kids were to get their invitations
in the mail. Jake and I finalized some of our plans for party last night. We are
deciding which games to play and other fun activities to keep the boys busy.
We will check Jake's counts early tomorrow and hope to get started with chemo.
Everyday that passes we become more nervous about the delay of chemo. We
feel much better when we are actively doing something to fight this disease
EVERYDAY!!
More tomorrow. Pray for platelets.
Natalie

Tuesday, April 09, 2002 at 09:05 PM (CDT)

Chemo is still on hold for Jake. His platelet count today was 25,000 up from
23,000 yesterday. His platelets are being very stubborn. I wish there was a way
to "jump start" them, but there isn't. On the bright side, Jake was able to attend
preschool for the second day in a row. I think that's an attendance record for him.
We are rechecking counts on Thursday, so Jake will be able to go to school
tomorrow also. It's share and tell day Wednesday and Jake needs to bring
something that starts with the letter "u." He wants to bring his Rams football
uniform that he has.. what a relief, because we don't have any unicorns lying around
the house. Jake had a fun day at school today. They made turtles out of small
paper plates and they played kickball in gym class...Jake said they even got to
run the bases. After school I took Jake to the fireworks store to pick out his
favorites to light off for his birthday. Jerry and I promised him that we would do
fireworks for his 5th birthday. At the time it sounded like a GRAND gesture, but
after all that he has been through, he deserves an entire fourth of July display.
Lucky for us, Jake was thrilled to pick up some firecrackers, colorful fountains,
moving tanks and spark spitting dragons. He had so much fun picking them out!!
The hard part is going to be getting him to wait until Sunday night to light them.
We are going to have to be very creative trying to fit his kids party and family party
in this weekend now that chemo isn't starting until Thursday. He needs to spend
at least two days in the hospital, and then the last two or three days he needs to
go in for outpatient chemo. Dr. Brandt has graciously agreed to work around our
party schedule. He knows firsthand that there are priorities in these kids' lives
that are far more important than there medical treatment. It will be crazy, but
we will work it out. The important thing is that Jake have the best birthday possible.
We can't believe that he is turning 5 years old.....I promise not to get too
melancholy in this post.
I wanted to take a moment and again thank all of you for continuing to check in
on this website. Thank you also for the wonderful, thoughtful guestbook entries.
We are hearing from friends and family from all over the country. What a wonderful
feeling of love and support we feel from all of you. Thank you for keeping a place
in your hearts for our son.
We love you all.
Natalie, Jerry and Jake

Monday, April 08, 2002 at 05:00 PM (CDT)

It's been a very rainy, cold day in Green Bay today. We are still waiting for spring.
We hydrated Jake last night with iv fluids to dilute his urine to prepare him for
chemo today. Jerry and Jake went to the clinic around 9 am this morning. Their
first stop was the Bronchial Lab for Jake's monthly Pantamidene treatment. This
is a breathing treatment which lasts about a half an hour. This drug is absorbed
directly into the lungs and helps to fight off pneumonia. Jake is not very fond
of the treatments..he says that the medicine has a "funny" taste when he is
inhaling it. Jerry said that he did a great job today.
Then it was back to Dr. Brandt's clinic to await Jake's blood count results. Jake's
platelet count has dropped since Friday from 33,000 to 22,000. Jake is unable
to start chemo today. We will recheck his counts tomorrow and hope to admitted
and get things started by mid morning. Jake's platelets need to be at least
50,000. Jake is feeling fine and was actually disappointed that he wasn't going to
be staying in the hospital. The good news is that he was able to attend preschool
today and his classmates and teachers were thrilled to see him. They are learning
about turtles this week.
We took Jake and his brother Ben bowling yesterday and we all had a great time.
We wanted to do something fun before all of us had to be couped up in the hospital.
Jake and Jerry were on one team and Ben and I on the other. Jake did great!!
He bowled a 45 his first game with one strike and a 36 his second game... not bad
for a 5 year old. We remembered to bring the camcorder so we captured some
more wonderful memories.
Jake is getting anxious for his birthday to arrive. He is excited about his "kids"
party on Saturday. Since he didn't start chemo today, he will have to go in on
Saturday for a one hour infusion on an outpatient basis. We told Dr. Brandt that
we must work around his party. There are certain things that we will not compromise and Jake's birthday party is one of them.
We will let you know how the counts are tomorrow. Please keep Jake in your
prayers. We are hoping and praying that he tolerates this round of chemo as well
as the last.

Saturday, April 06, 2002 at 09:24 PM (CST)

Jake had a very busy, active day. He had his friend Jared from preschool over
to play today. They played together for over 4 hours. It was wonderful. I know
I have said this so many times before, but my heart is filled with joy when Jake
gets to be a kid. I will never take these moments for granted...they are precious
and few and far between. I love to see him having so much fun especially when
he will be starting chemo on Monday. We hope to only have to spend three
days inpatient, but it will all depend on how Jake tolerates this round.
We mailed the invitations to Jake's "kids" birthday party today. He is inviting the
boys from his preschool class. If everyone can make it, that will be 11 boys.
Jake is going with the Bob the Builder theme and he is very excited about the
balloons, plates, napkins, favor boxes and pinata that we picked out. We shopped
on Friday for some favors to put in the boxes. I don't know who enjoyed it more,
me or him. Okay, I did!!! I am looking forward to sharing this "first" with Jake.
His first all kids birthday party.
As I was sitting here typing this journal, Jake ran downstairs to my office and told
me that he painted a picture for me. It is a picture of Jessie and Woody from Toy
Story 2. Woody and Jessie are hugging each other. I asked Jake to "autograph"
it for me and I hung it on my bulletin board so I can look at while I'm working.
He told me that it's the "best" one he has ever painted!!
I think I'm a little more emotional than usual tonight....with chemo starting and
Jake's 5th birthday approaching, I am filled with so many different emotions. It
didn't help that I watched the movie Lorenzo's Oil tonight. I had never seen it
before. What a moving story of two parent's determination and tenacity to save
their son from a rare disease. Their struggle hit too close to home. But it also
reminded me that it is our duty as parents to be our child's advocates and to not
be afraid to ask questions when it comes to our child's health.
Jake is upstairs playing football in the living room with Jerry. I can't believe the
child has ANY energy left after how hard he played all day. He and Jared played
hockey, football and tee ball outside today. They played with wrestlers and made
up a "spy game" in the house. Jake truly has an unlimited amount of energy.
Well, it is almost 10:00pm and it's time for Jake to put Mom and Dad to bed.
Too bad his parents are soooooo old.
We hope all of you have a wonderful weekend.

Friday, April 05, 2002 at 10:48 AM (CST)

It looks like Jake will not start chemo until at least Monday. His platelet count
has not yet stabilized. It figures that he will start chemo the same day everyone
returns to preschool. He will probably miss another couple of weeks of school.
We are trying to finalize plans for Jake's birthday but everything hinges on when
chemo starts and how Jake tolerates it. We hope to have a "kids" party next
Saturday and a family celebration on his actual birthday, the 15th. We will have
to stay flexible.
The weather is starting to warm up in Green Bay so maybe Jake can try out
his new roller blades and get on his bike. Jake and I are going shopping to Target
today to spend some of his "fun" money that people have generously sent him.
We are going to look for knee, elbow and wrist pads for his roller blades and of
course, we will probably have to peruse the wrestling figure aisle.
We hope everyone has a wonderful weekend. THINK SPRING!!

Thursday, April 04, 2002 at 08:52 AM (CST)

Jerry and I attended the funeral service in Milwaukee for Michael Naselli
yesterday. It was a very moving service and quite emotional for us. The family
carefully planned a beautiful tribute to Michael's short life here on earth. They
showed a video compilation of the past seven years and had numerous
picture boards highlighting Michael's life. It was a very lovely service. We continue
to pray that the family's faith in God and the knowledge that they will one day be
reunited with their precious son and brother will give them the strength to carry on.
Jake's doing well. He spent a great day with Gramma Clarie and Granpa Jerry
while we attended the funeral. He got to go shopping at Best Buy with Gramma
and she bought him two new movies....wrestling, what else??? They went out to
dinner at Jake's favorite restaurant, Barley's. Jake had french toast and bacon.
He loves to order breakfast for dinner. They went back to Gramma's house, he
took a bath, got in his pajamas and snuggled in bed with Gramma watching his
new movie. We called him on our way home and I wish I could describe the
joy and excitement in his voice. He was thrilled about the new movies and that
he was having a "pajama party" with Gramma. He actually "squeaked" on the phone. The little things mean so much to him and to us. My heart was filled
with joy to hear his excitement and to know that he was enjoying the moment.
Jake's platelet count dropped yesterday from 61,000 to 43,000. His white count
is very high... 6.3 with an ANC of 5355. This is due to the fact that the poor child
has continued to receive daily neupogen injections. His little thighs are black and
blue from the shots. We hope that last night was the last one for awhile. We are
checking his counts today and still waiting for signs that he is making platelets
on his own without the help of a transfusion. They will begin chemo once he
stablilizes at 50,000.
I guess a couple of the pictures did make it to the website. I have a third one
that needs to be added. Hope to get to that tomorrow.
Natalie

Tuesday, April 02, 2002 at 10:45 PM (CST)

Sorry folks.....I was not successful in loading the new pictures. I guess I should
have checked them before I journaled that they were there. I will try again tomorrow. I got to spend a wonderful, memorable evening with Jake. We went to see ET
at the theater. I can't believe that it has been 15 months since Jake was last in
a movie theater. He was very anxious to see the movie. It was so special
sharing a movie with him that I had seen in the theater 20 years ago. I tried to
explain to him how long 20 years was....before he was born or his brothers were
born and even before I met his dad. I was still living in Wisconsin Rapids at the
time. It is scary to think how quickly 20 years have gone.
Jake loved the movie. He was sad when ET got sick, but he was so happy
when Elliott helped him get home. I clearly remember crying during this film
20 years ago. Jake chatted in the car all the way home. We talked about the
movie, the icy highway we were driving on and anything else that popped into his
head. I cherish these moments with Jake and I try so hard to remember every
word he says and etch them in my memory. He is a great conversationalist for a 5 year old.
Jerry and I will be attending Michael Naselli's funeral in Milwaukee on Wednesday.
We haven't told Jake yet that another child he knew is now an angel in Heaven.
I don't think I have the heart to tell him again. Michael is the third child that Jake
has personally known that has passed away from some form of cancer. It is all
too sad to comprehend for us adults let alone a child.
I promise to work on the photos again.
Love, Natalie



old!!!

Tuesday, April 02, 2002 at 04:49 PM (CST)

A snowy day in Green Bay today. Jake's
counts have not yet stablilized on their
own, so we will be checking them again
tomorrow. Once they stablilize, we will
begin chemo.
Finally, I have added some new pictures
to the photo album. Yes, there are ones
of Jerry "hairless!!"
Enjoy.
Love, Natalie Jerry and Jake

Monday, April 01, 2002 at 10:06 AM (CST)

What a wonderful Easter holiday we had. Jake was feeling great (with help from
the platelet and red cell transfusion) and he was full of energy. He woke up
Easter morning and proceeded to search for his basket. He was very patient.
He looked in a few rooms before commenting that "this is going to take me a
month." He finally found his basket in Jerry's shower stall. He was so excited
to see the many surprises that were left for him. Jake isn't that fond of candy, so
he was thrilled to get the Mighty Ducks video, a book of dot to dot and mazes,
soap crayons to use in the bathtub, a baseball player figure and some Reese's
peanut butter eggs.
It seemed like an eternity while Jake waited for his aunts, uncles and cousins to
arrive. Everyone came around 1:00pm and the kids all started to play. My family
has one granddaughter who is 20, a grandson who is 16, and then five little grandsons ranging from the ages of five to 8 1/2 months old. ALL BOYS!!!
They really enjoyed playing together. I was proud of Jake for sharing his toys.
My sister Bernadette and I both made up Easter goody bags for the little ones so
they were excited about opening those. We then had a plastic egg Easter Egg
hunt before dinner. I filled the eggs with coins and some candy. The little ones
enjoyed the search. Of course, Jake would find an egg, shake it and if it didn't have
coins in it he would put it back!! I guess there are advantages to being the oldest
of the group.
We had a wonderful meal that everyone helped to prepare and then we celebrated
Jake's birthday. I have learned that it is best to let little ones open their gifts before
the cake. They just don't have the patience to wait. Jake received wonderful
gifts and we thank everyone for their generosity. He got roller blades ( look out
platelets!!) Thomas the Tank windmill and Gordon the engine, a super soaker
water gun, jigsaw puzzle, bouncy superballs, and money to buy what he wants.
His Aunt Terri and Uncle Mike gave him a special gift as well, they signed him up
for another year of tee ball. Jake says he has to start practicing right away.
We were able to spend a wonderful afternoon visiting with our families. We were
able to speak to my Mom on the phone from Florida, so the day was complete.
We are waiting to hear about Jake's counts to see when we can possibly start
chemo. I will probably be later in the week.
Jake's friend Cameron is improving. He spent Easter in the hospital in Milwaukee,
but it sounds like the Easter bunny found him there. He is on antibiotics for a
c-diff infection that occurs in the intestines. They are still waiting for his counts
to recover from his chemo. Please continue to remember them in your prayers.
We received word yesterday that another neuroblastoma child, Michael Naselli,
is now an angel in Heaven. Michael passed away on Saturday after bravely battling
his disease for over 3 years. He died at home surrounded by his loving family.
Michael was 7 years old. We know that Michael is free of pain and has left
his cancer beaten body to join God in heaven. We hope that he has found joy
and peace in God's loving arms.
We had the pleasure of meeting Michael and his parents when Jake was at
Children's Hospital in Milwaukee having his biopsy surgery back in July of 2000.
Wendy and Michael found out that their was another neuroblastoma child in the
hospital (very rare occurrence) so they sought us out and came to visit. We have
always known that they were sent to us by God because they came to Jake's hospital room only moments before we were suppose to leave.
Seeing Michael doing so well at that time, was an inspiration to us. We had just
begun our long journey with this disease and it was so comforting to talk to another
person who knew EXACTLY what we were going through. Wendy had also
helped us to decide about going to New York to seek treatment options for Jake.
She and Michael truly were angels that day. Michael and his family will always
hold a special place in our hearts. We hope they find the comfort, courage and
strength that they need during this difficult time.

We hope all of you had a wonderful Easter.
Our love, Jerry Natalie and Jake

Saturday, March 30, 2002 at 10:11 PM (CST)

We spent over 8 eight hours at the clinic on Friday. Jake had to have both
a platelet and red blood cell transfusion. As usual, his central line was giving us
difficulty, so the process took longer than usual. Jake was a real trooper. He
slept for over 4 hours from the Benadryl. After the clinic, we went to Mike and Cindy Peot's for a fish fry. Jake ate 3 large pieces of walleye and some jello beans.
After dinner, Jake, Jacob Peot and Jesse Peot colored eggs together. Jake had
a ball with the "big boys." He made the boys laugh with his funny faces and
witty one liners. We had a wonderful evening together.
Jake received a package from the WWF Corporation. I had written to them before
we attended the WWF wrestling event to see if Jake could meet any of the wrestlers.
They were unable to accomodate us at the time, but they mentioned that they would
like to send some things to Jake. We had forgotten all about it, when out of the
blue the package arrived. Jake was ECSTATIC!!! The box contained tee shirts
from the Rock, autographed photos of at least ten wrestlers, and a HUGE stack
of the Rock tattoos. Jake quickly applied one to his upper arm ( just like the Rock) and proceeeded to flex his muscles. What a wonderful, thoughtful surprise.
The world is filled with kind and generous people.
We did get some good news yesterday. Jake's urine results are back and his
VMA and HVA levels have decreased since the end of February.. This means that his disease is responding to the current chemo. This is a small victory, but a victory
none the less. We will be doing another round of the high dose Cytoxan with
Irinotecan as soon as Jake is making enough platelets on his own. We hope to
start sometime next week. We hope and pray that he tolerates the next round
as well as he did the first one. We know now to expect low counts for a few weeks
after chemo. We thank you for all of your extra prayers.....they truly are helping.
We are continuing to pray for a miracle and we hope that Jake will be restored to
good health.
We wish you all a blessed Easter. We are looking forward to spending it with
our families.
Our love, Natalie Jerry and Jake

Thursday, March 28, 2002 at 07:50 PM (CST)

Well, Jake's first day back at preschool was GREAT!! All of his friends were
happy to see him. They had share and tell today ( Jake brought a few of his
Thomas the Tank trains) they had an Easter Egg hunt and did an Easter project.
Jake couldn't wait to get to school today. Jerry got to take him and pick him up.
After school they went to Arby's for one of Jake's favorites....roast beef sandwich
and curly fries. When they got home, Jake took a nap. I am sure that his
hemoglobin is still low so we will probably need a transfusion tomorrow. That's
okay because it means that Jake will feel great for the Easter weekend. We are
preparing for our families to be here and we are looking forward to a wonderful
day together.
As I write this, Jake and Jerry are watching WWF wrestling on the big screen
tv. I find myself getting caught up in it every once in awhile. It is the male version
of a soap opera!! It provides a welcomed diversion for us.
We are looking forward to coloring Easter eggs tomorrow night. Jake's godparents
Mike and Cindy Peot have invited us to their home Friday night for a Fish Fry.
Jake can't wait. Jerry will be frying some of the walleye and perch that he caught
while in North Dakota.
I am sorry that I haven't gotten the "bald" pictures on the website yet...I promise
to work on it this weekend. Be sure and check the photo album on Monday.

We are hoping for good news regarding Jake's urine VMA/HVA results tomorrow.
We would greatly appreciate extra prayers for some good news.
As always, our love and gratitude to all of you.
Take care. Natalie, Jerry and Jake

Wednesday, March 27, 2002 at 01:37 PM (CST)

Jake's counts are finally looking up. His ANC has finally reached the 500 mark.
We are able to stop the iv antibiotics today, but we must continue with the neupogen injections through the weekend. Jake's hemoglobin is low, but we
are waiting until Friday to see if he'll will need a transfusion. Jake will be able
to go to preschool tomorrow!! His first day in almost a month. He is so anxious
to see his friends. If his counts remain good, I hope to be able to have some
of his classmates over for a play day during Easter break.
We are going to be getting together with our families at our home for Easter on
Sunday. I am so looking forward to seeing my siblings and my niece and nephews.
We have not been together since Christmas!!! Jake is excited about seeing all of
his cousins. We are going to celebrate Jake's birthday a little early since both
families will be here (except for Gramma Dee and Granpa Russ- they are still in
Florida) and Jake will be feeling well. I had to order Jake a WWF Stone Cold
Steve Austin birthday cake, big surprise!!! Jake will be 5 years old on April 15th,
so I am sure we will be celebrating his birthday a few more times.
We hope to start the next round of chemo on Monday, but we will discuss the
options with Dr. Brandt on Friday. We are also waiting for the results of Jake's
urine tests to see if the first round has been effective against the disease. We
are praying and hoping for the best possible news.
Jerry comes home from North Dakota tonight and we can't wait. Jake and I
missed him very much. Jake is anxious to eat some fish.
That's all for now. We wish you all a blessed Easter.
Love, Natalie, Jerry and Jake

Monday, March 25, 2002 at 11:33 AM (CST)

Wow, it's already Monday!! Jake and I had a great weekend. We couldn't go
anywhere, but we had fun hanging out at home. We had a few home projects to
tackle. Jake helped me do some touch up painting and mostly got in the way
while Gramma and I wallpapered one of our bathrooms. Jake's counts are climbing,
but very slowly. His ANC is up to "78." He is still unable to attend school or
be out in crowds. We are rechecking his counts on Wednesday. For the time
being, we have to continue the neupogen injections ( poor Jake, today marks 15
straight days of shots ) I was worried about having to give the shots since Friday
without Jerry's help, but Jake has been a real trooper. He lays on the couch for
me and closes his eyes will I give him the shot. Usually, he gets to hug daddy
while I give them. I am so proud of Jake and I think he is pretty proud of himself.
The weather was not the best this weekend, so Jake didn't get to go outside. He
kept very busy playing with his wrestlers, watching videos and doing workbooks
and puzzles. I had to make more blueberry muffins and he ate all six of them
the first day. He has some bruising on his arms and legs, but maybe they are
just blueberry spots!! Jake's brother Ben came over Sunday evening to spend
some time with Jake. Ben brought two wrestling videos for Jake ( Yippee!!) and
then enjoyed watching them together. It was a nice treat for Jake to play with
someone closer to his own age.
Jerry is enjoying his fishing trip, but he sounds homesick!! He will be back on
Wednesday evening and I know that Jake can't wait.
We received an update on Jake's buddy Cameron. He is in the hospital with a
fever and his having some difficulty breathing. The doctors think that his disease
may have spread to his lungs. His parents will have more answers today. Please
keep him in your prayers and if anyone is interested in sending Cameron a note
or a card, his address is Cameron Kerwin N65W15245 Blue Heron Dr.
Menomonee Falls, WI 53051. I know that Cameron and his parents would appreciate your thoughts and prayers.
Love, Natalie

Friday, March 22, 2002 at 02:20 PM (CST)

We are sitting at the clinic while Jake
is getting a platelet transfusion. His
ANC is up to "20" today. Slowly, but surely
we will reach that magic number of 500. Jake
is watching a WWF video while his platelets
are infusing. It usually takes about an
hour for a platelet transfusion. Jake is
fighting falling asleep. They give him
Tylenol and iv Benadrly as pre meds and the
Benadryl makes him very, very sleepy.
Jerry left at 6:00 am this morning for
his fishing trip to North Dakota. Jake and
I are going to enjoy some time together but
I know he will miss his dad.
We are picking up Gramma Clarie and Grampa
Jerry at the airport tonight. Jake has to
wear a mask to go into the airport, but
he really wants to go. We plan on spending
a quiet weekend at home. Jake and I rented
some movies and have a few home projects to
get done.
We hope all of you have a great weekend.
Take care, Natalie

Thursday, March 21, 2002 at 08:03 PM (CST)

Jake's blood counts are still in the "tanker." His ANC has jumped to a whopping
"12," a far cry from the 500 we are waiting for. The bright side is that twelve is
better than 2. It has nowhere to go but up. The ironic thing is that Jake feels
awesome. He plays all day, eats like a horse (there is now only 1 blueberry muffin
left) and has more energy than we could ever hope for. We are drawing blood
AGAIN tomorrow, because he may need a platelet transfusion. He still can't
attend preschool, be around crowds or ill people. I hope to be able to get him
out of the house this weekend, but we'll know more tomorrow.
Jerry has the opportunity to go ice fishing at Devil's Lake in North Dakota. He has
always wanted to go, so he is leaving Friday morning with 5 other guys and they
will be gone until next Wednesday evening. Jake is not happy!!!! He wants his
dad to stay home. We tried to explain to him that everyone needs some time
away to do the things that they enjoy. NO SALE!!! He's still mad. The only
thing that has pacified him at all is the fact that Jerry hopes to bring back ALOT
of perch and walleye and those are Jake's favorites. I am crossing my fingers that
Jerry is successful, because you don't want to see a 4 3/4 year old 50% Italian,
50% Belgium boy go crazy. It's not pretty.
We just got an update on Jake's little friend Cameron from Menomonee Falls.
Cameron started a different, higher dose chemotherapy this past Tuesday and he
is feeling pretty lousy. He is nauseous, tired and not eating much at all. Please
keep Cameron and his mom and dad, Kris and Kevin in your thoughts and prayers.
Cameron has been through so much lately and we hope that he will be back to
his old self soon.
Thank you all for your love and prayers.
Natalie, Jerry and Jake

Wednesday, March 20, 2002 at 04:56 PM (CST)

Jake and Jerry are taking a nap so I thought I would get my journaling done for
the day. Jake was able to go to Peggy's house AGAIN for a couple of hours.
He actually cried when I went to pick him up. He really enjoys spending time with
her. Could it be because he ALWAYS gets his way???? We are so lucky to have
such a wonderful friend who truly loves Jake. When he got home from Peggy's
he asked me to make blueberry muffins. He proceeded to eat two fresh out of
the oven and then asked for a third about an hour later. Good thing I made a dozen.
Jake talked to his Gramma Clarie today from Florida. They will be home
this Friday. Jake misses playing at her house. I think Gramma is a little homesick
for Jake too. Gramma Dee and Granpa Russ are also in Florida. They have been
staying with my grandfather and helping nurse him back to health. I hope they
are all enjoying the warm weather. I think we're ready for a trip to a warmer climate.
We will be drawing blood tomorrow to check Jake's counts....cross your fingers that
they have risen. We have to give him iv antibiotics until tomorrow morning and
he gets a neupogen injection tonight and tomorrow night. I hope he can get a
break after that!! Before we know it, it will be time for another round of chemo.
That's all for today.
Love, Natalie

Tuesday, March 19, 2002 at 08:16 PM (CST)

We got Jake's blood count results and his white count has only climbed from
0.1 to 0.2. His ANC which needs to be above 500 in order for Jake to be less
susceptible to infection and illness is only "2." That's right, 2!!! At least it is
up from zero which is where it was since last Friday. We are hoping that the
numbers will improve quickly. Jake feels fine except for being a little crabby.
We knew that the more intense chemotherapy would wipe out his counts, but we
weren't sure for how long. Let's just hope that the chemo is doing something to
affect the bad cells, because it certainly is destroying the good ones.
Jake was able to go over to Peggy Warwick's house today and play for a couple
of hours. It is great for Jake to have a change of scenery. He has either been
couped up in the hospital or a prisoner in his own home. He still is not able to
go back to preschool until his ANC reaches over 500, so we are grateful to Peggy
for spending time with him.
We had some snow in Green Bay late this afternoon. The flakes fell fast and were
the largest I have seen in many years. Jake went outside and tried to catch some
in his hands. I told about how when I was little, we used to catch them on our
tongues. He thought I was nuts, but he tried it anyway....he ended up catching
a few on his tongue, but more on his nose!!!
Jake is getting anxious for his 5th birthday which is coming up in less than 4 weeks. We may have to celebrate earlier or later, depending on the chemo schedule. He wants to have a WWF wrestling theme with cake, decorations and
fireworks!!! I better get busy planning and preparing. We spent Jake's birthday
and Easter in New York last year, so we want to make it extra special at home
this year. We thank you all again for your continued prayers, love and support
which mean so much to us.
Love, Natalie, Jerry and Jake

Monday, March 18, 2002 at 09:44 PM (CST)

Jake is feeling great today. He seems almost back to his normal self. His color
is good, the dark circles under his eyes are almost gone and he is eating very
well. We will find out his counts tomorrow morning and if they are good, we will
send him to preschool at noon. He is really anxious to get back to school and to
his friends. Jake and Jerry had a nice day at home together while I was at work.
Jerry will be getting busy on the farm soon and the days spent at home with Jake
will be at a premium. Jake is really going to miss all of the time he gets to spend
with Jerry during the winter months. I'll miss all of the help around the house.
Jerry does so much during the winter months....the laundry, the house cleaning
and taking care of Jake. It is such a great help while I am working.
It is WWF night so Jake wanted to do his neupogen injection and take his
diflucan medicine right away this evening...he usually doesn't ask to do either one
of them. We have 5 more doses of the iv antibiotic and hopefully only a couple of
more days of the injections.
We will be doing a urine test shortly to find out if this chemotherapy is being effective against Jake's disease. Our hope is that his urine VMA and HVA levels will have decreased since late February so that we can begin to look at other treatments
besides chemotherapy.
Jerry is still getting used to his baldness...he says that his shirts keep sticking
to his head when he takes them on and off...not as smooth a scalp as Jake's.

Take care. Natalie

Monday, March 18, 2002 at 06:05 AM (CST)

We experienced some internet problems over the weekend and I was unable
to journal. First and foremost, Jake is HOME!! He was discharged on Saturday
afternoon. His white blood count remains low (0.1) but Dr. Brandt allowed Jake to
come home with iv antibiotics, neupogen injections, diflucan (anti- fungal med)
and peridex, an antiseptic mouthrinse. Jake was so excited to be home. He
immediately began playing with all of his toys. He told me that when he gets
home from the hospital, he has to play with EVERYTHING!! We did get home in
time to see Jerry before he left for the St. Baldrick's event. Jake was unable to
attend, but we caught it all on video for him. I was able to attend the event for
a couple of hours, thanks to Peggy Warwick for coming and spending the time
with Jake. What would we do without YOU???
The event was a great success and every in attendance had a wonderful time.
The shavees had a lot of fun with it and we thank them for their courage and
participation. There were 9 shavees in all, eight men and yes, one woman!
The unofficial dollar total raised is $10,000.00. We raised over $1,500.00 in pledges
for Jerry. Thanks again to all who donated. The event not only raised money,
but also raised awareness of childhood cancer and the children who battle it
everyday. We are already looking forward to next year's event and hope that it
will be even bigger and better.
Jake is getting used to dad's bald head. We took lots of pictures and hope to
have a few on the website by the end of the week.
We will be checking Jake's blood counts again on Tuesday and we hope he can
return to preschool by the middle of the week. We know how much he misses
his classmates.
As always, thank you for your cards, emails and prayers!
Love, Natalie, Jerry and Jake

Friday, March 15, 2002 at 02:00 PM (CST)

I spent the night with Jake last night. We had terrible weather in Green Bay,
snow, sleet and ice so it was best that I stay put at the hospital.
Jake continues to improve. The red blood cell transfusion improved his hemoglobin
from 6.8 to 10.0 which means more energy for Jake. Today I received a platelet
transfusion, so he will be full of energy by tonight.
It has been 48 hours and the blood cultures remain negative and he has not had
a fever since Wednesday...these are good signs.
We hope to see Jake's counts begin to rise slowly over the next couple of days.
He is still very immune suppressed so we are asking that no one with the cold
or flu come to visit him. We appreciate your understanding. We are hoping that
Jake can come home either Saturday or Sunday. We can always administer
the iv antibiotics to him at home where he is most comfortable.
Jake won't be able to watch Jerry get "sheared" tomorrow, but we will take plenty
of video and pictures so that he can enjoy the moment over and over and over.
Thank you again for your pledges, we have almost hit our goal of $1000.00. We
appreciate everyone's generosity.
Tonight we promised Jake we would have a "pizza party" in his room. We have to
do this one night each time he stays in the hospital. He loves the bread sticks
from Pizza Hut and they deliver right to the hospital room.
Take care and have a great weekend.
Love, Natalie

Thursday, March 14, 2002 at 09:39 AM (CST)

Just a quick note to let you know that Jake seems to be doing better this
morning. He has not had a fever since last night, but his counts are even lower
today than yesterday. He is getting a red blood cell transfusion today and he
will probably need platelets by tomorrow. He will continue on the iv antibiotic
for at least 5 more days. We are still awaiting results of the blood cultures...
praying for "negative."

More later,
Love, Natalie

Wednesday, March 13, 2002 at 10:25 PM (CST)

I know it's late, but I finally have a few moments to post.
Jake had an appointment at the clinic today to have his central line repaired
AGAIN!!! He woke up this morning and went straight to the couch and layed
there until it was time to leave for the clinic. He said he was too tired to eat or
to get dressed. We knew his counts must have taken a nose dive. When Jake
and I arrived at the clinic, they took his temp and it was 102. The fever had come.
His counts are very low, so they started iv antibiotics immediately and they
admitted Jake to the hospital around 2pm. He was feeling achey all over and
very, very tired. The iv fluids and antibiotic gave him a little jump start. He finally
ate some frosted flakes and a peanut butter and jelly sandwich at 6:30pm.
Jerry came to the hospital around 8:00 to relieve me and to spend the night.
Jake seemed a little better before I left, but definitely not his usual self.
His urine cultures were negative, so we are waiting for the blood cultures to come
back...they take 36-48 hours. We hope and pray that he does not have a serious
infection. Thank you for keeping Jake in your prayers and I will update everyone
tomorrow.
Time to get some rest.
Goodnight, Natalie

Tuesday, March 12, 2002 at 12:40 PM (CST)

I thought I would journal early to make up for my past tardiness.
Jake is hanging in there. He seems fine today, still a little tired. We are re
checking his counts on Wednesday and I have a feeling he may need a red blood
cell transfusion. This is typical for him after chemo..his hemoglobin was 7.5
yesterday and we usually transfuse if it gets below 7.
Jake's friend Peggy is coming over today to play with him. She is a dear family
friend who helps care for Jake when he can't go to school. He was so cute
this morning, he asked me if he could call her to see if she would come over.
He said he saw a commercial on tv about some toys that reminded him of things
he plays with at her house. He grew inpatient waiting for me to finish my work so
that I could call her, so I wrote down her phone number and he called himself.
Now, he keeps asking when she will get here? I guess he is tired of hanging out
with mom today. Peggy and Jake have so much fun together. She is like his
"second mom," except she is all FUN and no RULES!!
The weather is finally starting to warm up in Green Bay. We should hit the 40's
today....a heat wave. I hope Jake is able to get outside and ride is bike soon.
Hope all is well with everyone.
Take care. Natalie

Monday, March 11, 2002 at 08:50 PM (CST)

I can't believe how quickly the days go, sorry I missed Sunday's entry.
Jake is doing well. His blood counts are actually better than I expected today.
His platelets have dropped to 65,000, but his white count is 2.8 which means
he hasn't hit the immune suppressed range yet. He is getting more tired, more
quickly. He took a 1 hour cat nap tonight from 6-7pm. Of course, he woke up
in time to watch WWF Wrestling!!!! Today when I was trying to draw Jake's blood
for his CBC, I noticed that his central line was leaking. AGAIN!!! Jerry took him
to the clinic right away and they were able to repair it. AGAIN!!! We have had so
much trouble with this central line, it is so frustrating. We are nervous because
a tear in the line is a prime source of infection.
Jake played with his Easy Bake oven today. He made a sugar cookie and a yellow
cake. Sounds strange, huh!! A kid who one minute is baking in an easy bake
oven and the next minute is cheering as wrestlers body slam each other. That's
our Jake!!!
I was able to be pampered today and it felt wonderful. I had a massage this
morning and my hair cut and colored this afternoon. I can't believe how great it
felt to be a selfish for a day. Jerry and Jake had given me a gift certificate for a
massage for my birthday and it only took me 3 1/2 months to finally use it.
I highly recommend it. What a stress release.
We heard from the doctor in Texas today regarding the vaccine that is growing
from Jake's tumor cells. She said that it should be ready in about 2 months.
The object of the vaccine is to help Jake's own immune system fight the neuroblastoma. We started this process back in September, knowing that it would
take several months before the vaccine was ready. We are hoping to be able
to use it soon.
Thank you for your pledges for St. Baldrick's Day. They are greatly appreciated.
Jerry has begun growing a mustache and goutee so that he doesn't feel completely
hairless. We hope that Jake will be well enough to attend the event. He is
so excited to watch dad loose his hair.
Thank you all dear family and friends for your continued love and support. You
have been there for us and by our sides every step of the way and we thank God
for all of you everyday.
Our love always, Jerry, Natalie and Jake

Saturday, March 09, 2002 at 10:24 AM (CST)

Jake enjoyed the fish fry last night. He loves walleye and perch and ate plenty
of each. He also loves to have "kiddie cocktails" to drink when we go out. He
loves the cherries more than anything.
Jake is beginning his "irritable" stage. I think this is caused by the counts starting
to drop and the fact that he has had 5 days of chemo. It becomes very difficult
to please him. "I want juice, no, not that juice!" "I want the other juice, it's colder."
Of course the juices are exactly the same kind from the same refrigerator.
"I'm hungry!" "You don't buy any good things to eat!" "I'm sorry Mom, I love you!"
We compare it to the Jekyl and Hyde and Sybil personalities. It's like living with
your own little schizophrenic. I feel so bad for him, because you can tell that he
can't control his feelings and he doesn't understand why he acts this way.
Other than emotionally, he seems to be fine. He is starting to get tired more quickly. We will spend an uneventful weekend at home doing "projects." That
Jake's name for drawing, painting, play-doh, schoolbooks etc.
I wanted to make you all aware of an upcoming event. Saturday March 16th,
the annual St. Baldrick's Day is taking place in Green Bay. This event started
with a man in New York volunteering to have his head shaven
to raise money for childhood cancer research. The event has continued and is
now held at various cities all over the country. Shavee's collect pledges and
the money goes directly to the National Childhood Cancer Foundation for research,
advocacy and eductation. Jacob's doctor, Dr. Brandt is participating and yes,
Jerry has agreed to be shaven!!! Jake is ecstatic. He can't wait for dad to be bald
like him. I am collecting pledges for Jerry, so if anyone is interested, you can
email me or call at 920-434-1170 and pledge any amount you wish. Please leave
your address so a pledge reminder and or receipt for tax purposes can me mailed
to you after you fulfull your pledge. Your support will be greatly appreciated.
You can learn more about the event by logging on to www.StBaldricks.org
Take care, Natalie

Friday, March 08, 2002 at 03:24 PM (CST)

I want to let everyone know that Jake
is home. He is was discharged at 8pm and
we home by 8:30. Jake is feeling great.
His last day in the hospital was filled
with fun. His preschool teachers, Mrs.
Klimek and Mrs. Koehn came to visit. They
brought Jake a fun activity book filled with
mazes, dot to dots, etc. This is one of
Jake's favorite things. They also brought
a booklet made up of pictures drawn by each of Jake's classmates. The booklet is so
thoughtful and precious. The kids all did a great job.
Jake also had a visit from his very good friend Ben Klintner and his sister Emily. Ben also goes to preschool with Jake and they are very close friends. Jake was so happy to see him. They played with the Legos that Ben brought for Jake. Ben, Emily
and Jake had alot of fun playing together.
We want to thank Kay Klintner for bringing
the kids to visit.
Jake wants to thank everyone for all of the
cards he received at the hospital. He gets so excited about the mail!!! Your words of
love and support are so comforting to all of
us. We were so concerned about beginning
this new chemo and your support has meant
so much to us.
We are at the clinic right now getting
Jake's one hour dose of Irinotecan. We are
meeting Jerry and Jake's godparents Mike
and Cindy for a fish dinner afterwards.
Fish is one of Jake's very favorite meals.

His counts are still holding steady at the
normal range. We will keep him away from
ill people and recheck his counts on Monday
morning.
Please keep Jake's friend Cameron in your
thoughts and prayers. He is tolerating his
chemo treatments very well and a local
church in the Milwaukee area is holding a
benefit concert in Cameron's name on Sunday.
We hope that Cameron continues to feel well
and that the event will be a huge success.
Have a wonderful weekend.
Love, Natalie

Wednesday, March 06, 2002 at 09:58 PM (CST)

Day 2 is over. Jake is doing great. We finished with the high dose Cytoxan
tonight around 7:00pm. Jake has not had any complaints. He had a very, very
busy and fun day. This morning two of Jake's preschool friends, Austin and Garret
came to visit with their moms. The three boys played in Jake's room for over
3 hours!!!! It was so great to watch Jake "being a kid" even with an iv attached to
him. The boys played with dirt bikes, a fishing game and wrestlers. Austin and
Garret were suppose to go to preschool at noon, but they were having soooooooo
much fun, that their moms thought it would be okay to miss a day.
We are so grateful to the Wickmans and the Hess' for spending the day with Jake.
Everyone had a wonderful time.

Gramma Clarie, Aunt Terri, Uncle Mike and Aunt Cindy also came to visit today.
Jake continues to tolerate the chemo well. His kidney function remains normal
and he is still eating well. His potassium was low last night so they added some
to his iv bag. His blood counts have not started to drop yet, this will usually begin
7-10 days from the start of chemo.
Good news!!! Jake gets to come home Thursday night. Dr Brandt is discharging
Jake after he receives 24 hours of post hydration from the time the Cytoxan ended.
We hope to be home by 8-9pm. We will finish the last two days of chemo as an
outpatient. The Irinotecan is given as a one hour infusion and can be done at the
clinic. YIPPEE!!!! We will finish up on Saturday.
Thank you to those of you who have sent cards. Jake has them up in his
hospital room and was so excited to get them. Thank you for making him smile.
Time for me to gets some sleep.
Take care, Natalie

Wednesday, March 06, 2002 at 08:30 AM (CST)

The first day of chemo was uneventful, thank God. Jake started his day by going
to the clinic and making sure his cold was okay and checking his urine. Jake's
urine needs to be diluted before starting the high dose Cytoxan chemotherapy.
This chemo drug is very hard on the kidneys.
Jake was admitted around 11:00 am and the chemo began around 1:00pm.
They premed Jake with Zofran (an anti-nausea med) and they continue to run
plenty of iv fluids.
Gramma Clarie spent the afternoon with Jake until I was done working. They
worked on hidden picture books and played "go fish."
Jake was in great spirits when I got there and feeling as energetic as ever. His
appetite is starting to decrease, mainly because he doesn't like hospital food.
He did eat oreos, oatmeal raisin cookie, some hamburger and some green beans.
Our challenge is to get him to drink fluids. For some reason, when Jake is
receiving iv fluids, he never drinks much by mouth. His lips are starting to get
chapped, but he remains stubborn. His two chemo drugs were finished by
9 pm. followed by a drug called Mesna which again is used to protect and flush
out the kidneys. They will monitor Jake's kidney function very closely everyday.
Daddy was sleeping over on Tuesday night and they had their evening all planned.
They were going to watch a DVD movie on our laptop computer and lie in bed
eating chocolate cookie dough ice cream.
The house was so quiet and lonely without them both, but I got a good night's sleep
and will go to the hospital this morning.
We have a special request....there is a very special family who lives in Milwaukee whose son Michael has battled neuroblastoma for almost 4 years. Michael is very, very ill and is expected to only live another week or so. His family is strong in their faith and have prepared themselves and their son for a better life in heaven. Please pray that Michael may die in peace and that his parents and siblings find comfort and strength in the days to come.
With our thanks and love,
Natalie, Jerry and Jake

Monday, March 04, 2002 at 10:46 AM (CST)

Jake was able to spend some time playing
(falling) in the snow on Sunday. We had
drifts in our yard that were up to his
thighs. It was a little windy and cold
so he didn't spend much time outside.
Ben and Jake played Nintendo and watched
a movie together.
We came to the clinic this morning all packed for our hospital stay. I don't think
we left much at home!! Jake's central line
developed a leak in it over the weekend (again!!) They are going to repair it this
morning in the clinic, but we can not infuse
chemo or anything else for at least 4 hours.
We have decided to start chemo tomorrow since the chemo has to be infused in Jake's
line over 6 hours. If we try to start today, the chemo wouldn't begin until this
evening and then it would go late into the
night. That is such a hassle when we are
in the hospital because Jake is disturbed
during the night.
We will check into the hospital tomorrow and
begin the five day course then. Never a
dull moment with us!!!
Jake has a bit of a cold, but who doesn't
these days? He is actually disappointed that we are not going in the hospital today.
I think Jerry and I did such a good job
of selling what a great time he was going
to have, he wants to go now!!
We will update you tomorrow after we begin.
Thank you for your prayers and well wishes.
Love, Natalie Jerry and Jake

Saturday, March 02, 2002 at 03:21 PM (CST)

Well, Wisconsin is finally having winter. We are having quite the snowstorm
today in Green Bay. It began snowing last night and has not stopped. We are
expecting 9 inches by this evening. We hope to be able to take Jake sledding
tomorrow.
Friday was Jake's last day of preschool for awhile, so I changed my schedule
so that I could be a "parent helper." It was a very busy preschool day!
First was gym class. The kids got to hit balloons like volleyballs and volley them
back and forth to each other trying to keep them off of the floor. Jake and the
rest of the kids had fun. Then we played duck, duck, goose. When it was Jake's
turn to choose, of course he picked me. All of the kids, including Jake thought
it was so funny to watch a "mom" run around the circle. After gym we visited the
commons where the 6 and 7th graders were holding an International Festival.
Each student chose a country to research and present. The little kids were
very interested in seeing the maps, traditional dress and foods of each country.
I led a group of 4-5 preschoolers around the displays. They all kept telling me
that their favorite country is FLORIDA!!! How cute!!
The class then did a project, had their snack and sang a few songs. It was a great
day and I am so lucky that I could share it with Jake.
Jake's brothers are over this weekend, so I usually don't see much of Jake. He is
either playing Nintendo with Ben or watching sports with Alex. It is nice to have
built in babysitters.
Last night Jake's godparents, Mike and Ciny Peot came over and we had our
own fish fry. Jake loves perch and walleye and Mike is a very good fisherman.
Jake enjoyed the meal and playing with Mike and Cindy's two boys, Jake and Jesse.
We are starting to pack for the hospital. Jake doesn't seemed bothered by having
to stay over for 5 days and we will do our best to keep him busy. We are
packing all of his favorite toys, movies and games and we also bring alot of our
own food. The hospital food is not Jake's favorite. He calls it "old people food."
We want him to keep up his weight and strength going into this tough chemo.
Please continue to keep Jake in your prayers.
Thank you.
Love, Natalie, Jerry and Jake

Thursday, February 28, 2002 at 07:56 PM (CST)

To guote Jake today, " I am having the best day of my life today!" Yes, he is
very dramatic, but he certainly makes that most of everyday.
He woke up early this morning, so Jerry said that Jake could go with him to pick
up a load of straw at a farm. Jake got dressed in his "work" clothes. He has
workboots and a Carhart jacket just like Dad's. He looks like a miniature
farmer. I guess after they picked up the straw, they came back home and Jake
got changed for preschool. Today was his turn to bring the snack. He wanted
to make peanut butter corn flake bars with chocolate frosting. He asked me
to leave one bar without frosting, because one of his classmates can't have
chocolate. It amazes me how considerate and thougthful he is for a 4 yr. old.

Daddy took him to school and stayed for about a half an hour to be the "parent
helper." This was the first time for Jerry. Jake was so excited about having
Daddy come to school. Gramma Clarie picked Jake up from school and took
him to Dairy Queen and then to her house to play. She just got home from spending 5 days in Arizona so she and Jake had alot of playing to do.
They played baseball (in the house) and dominos. I picked Jake up after I was
done working and heard all about his GREAT DAY!! After dinner, his brother
Ben came over to play with him and watch WWF wrestling.
We hope to have a great weekend before starting chemo on Monday.

Have a wonderful weekend.
Love, Natalie, Jerry and Jake

Thursday, February 28, 2002 at 09:12 AM (CST)

We have consulted with Dr. Kushner in New York by phone, and have come
to a decision regarding our next step in Jake's treatment. Dr. Kushner and Dr.
Brandt had a long discussion and exchange of ideas and the best plan seems
to be to start a different chemo. We will begin on Monday. Jake will be getting
a much higher dose of Cytoxan along with a newer chemo agent called Irinotecan.
This chemo cycle lasts 5 days and must be done inpatient so that Jake can be
constantly hydrated and closely monitored.
The docs tell us that there is a 100% certainty that Jake's counts will drop dramatically and that he will get a fever. Our hope and prayer is that he will not
develop an infection that can not be treated with antibiotics. We are being
admitted Monday morning to St. Vincent's Hospital and will remain through next
Friday. We are comfortable with the decision and we know that chemo at this
time is our best option. Jake will hopefully be able to participate in the antibody
treatment in New York after chemo.
I will try to journal from the hospital. Jake will be on the 10th floor pediatric department, if you would like to send a note or card. Jake loves to get mail!!
Thank you all for your prayers and continued love. Once again, it has helped us
to reach a crucial decision for Jake.
Love, Natalie, Jerry and Jake

Tuesday, February 26, 2002 at 02:07 PM (CST)

I am sorry to keep you all in suspense, but our internet server was not
cooperating so I was not able to log on to Caring Bridge.
We met with Dr. Brandt yesterday afternoon and the news was not what we
had hoped for. Dr. Brandt believes that Jake's disease has increased in his
bone marrow since the last testing in December. The left anterior bone marrow
aspirate has increased neuroblastoma cells in it as does the right posterior
aspirate. The bone marrow biopsies, however, show less disease than in December. Because the bone marrow is such a large organ, it is impossible to
test it except to draw aspirates and biopsies which only give you a small sampling
of what is occurring in the entire bone marrow.
This fact coupled with Jake's urine VMA and HVA levels which are increased since
January, Dr. Brandt feels that continuing with another round of the current chemo
would not benefit Jake or help to decrease the disease.
So it's back to drawing board for us. Jerry and I are faced with another difficult
decision as to which treatment option will be best for Jake. We are going to
consult with the doctor's in New York in hopes that they can recommend a
suitable treatment plan. We feel that the best way to do this is to go to New York
and let Dr. Kushner and Dr. Cheung examine Jake and review all of his test results.
We are hoping to schedule an appointment with them ASAP. We don't want to
do nothing because we know firsthand that this disease waits for no one.
Please know that Jake continues to feel great. He still has alot of energy, is going
to preschool and eating well. He is no pain or discomfort whatsoever. We want
to move quickly so he remains in good health.
We ask that you pray for Jake and especially for Jerry and I that we may continue
to find the strength and guidance we need to do what is best for Jacob. We
thank you all for your support and love. Please know that we could not continue
on without it.
Our love and gratitude always,
Natalie, Jerry and Jake

Sunday, February 24, 2002 at 10:57 AM (CST)

I'm sorry to have waited so long to journal. The end of our week was very, very
busy. I have a major project going on at work, and my Grandfather who lives
in Florida is seriously ill and hospitalized. Jake is fine. The echocardiogram
and EKG results are "normal." We are STILL WAITING for the final bone marrow
biopsy results. We spoke to Dr. Brandt on Friday and he stated that the pathologist's report shows no increase in the disease burden in the bone marrow.
Because Jake's urine VMA and HVA levels are elevated since January, Dr. Brandt
wants to be certain that we are not dealing with increased or progressive disease.
Dr. Brandt is going to view the slides again himself on Monday and we have a
1:30 appointment with him to discuss the results. If the disease remains stable,
we will continue with another round of Cytoxan/Topotecan chemotherapy beginning
Monday afternoon. If the slides show increased disease, then we will be discussing
our treatment options.

Jake had a great weekend. On Friday night, our local cancer support group, The
Families of Children with Cancer had a social evening planned. We went to see
the Green Bay Gamblers hockey game. They provided a dinner before the game
and after the game, the team came and visited all of the kids and signed posters,
hockey sticks, etc. Jake was thrilled. Anything to do with sports and he is
excited. We all had a wonderful evening.

We got word this weekend that Jake's friend Cameron is feeling better. He has
been undergoing radiation and chemotherapy and the pain in his leg has lessened.
He is getting back to his old, playful self. We are thankful for his improvement.
Please continue to keep Cameron and all of the other children in your prayers.
We all know how powerful prayer can be.
I promise I will update the journal Monday after our appointment with Dr. Brandt.
We are still hoping for favorable results.
Love, Natalie

Wednesday February 20, 2002 6:42 PM CST

The preliminary bone marrow results are in and the slides show slightly decreased
disease or stable disease. We will take anything as long as it is not progressive
or increased disease. Jake's head MRI was normal, what a relief.
I know that a few of you that read these posts understand only too well the
agony we go through while waiting for test results. I know that all of the worrying
in the world will not change the results, and we try to stay positive, but it is the
most stressful time I have ever experienced. I think we actually make ourselves
physically sick during the week of testing. Thank God that Jake continues to
be his happy, innocent self.
The final bone marrow results should be back by Friday after the pathologist has
signed off on them. We are also waiting for the final EKG and Echo reports.
We will update you as soon as we can.
We hope you and your families are well. Take care.
Natalie, Jerry and Jake

Wednesday February 20, 2002 11:49 AM CST

Tuesday was another long day at the hospital for testing. Jake had his bone
marrow biopsies/aspirates done at 9:30 am. He did not wake up from the sedation
until around noon and of course he was HUNGRY!!! He sat up and ate all of the
lunch that I had packed for him. Next was the EKG and finally the Echocardiogram.
We left the hospital around 3:30. Jake wanted to stop at the drug store and
pick up the pictures that we took at WWF. They turned out pretty good. We will
have to update the website pictures soon!! Jake helped Jerry put running boards
on the new pick up truck when we got home.
Today Jake had his head MRI and we will be talking with the doctors this afternoon
to go over all of the test results. If all is well, we will start his 5th round of
chemotherapy on Monday. I will try to journal tonight because I know that you
are all anxious for the results.
There is not much else going on here. It has been rainy for two days and our
front lawn looks like a pond. Jake has been watching the wrestling video from
the other night over and over again!! Jerry's birthday is on Thursday, so Jake
and I better get busy baking a cake and counting candles.
Thank you for your prayers and good thoughts. Natalie

Monday February 18, 2002 8:26 PM CST

I will try to recap the WWF wrestling weekend for you, but I know that words
will never be able to express the true excitement of the evening.
Jake had the best time. We were able to keep the event a secret until right before
we left our hotel to walk over to the arena. I don't think that it sunk in at first.
He kept asking if he was really going to a WWF match?? He kept hugging
Jerry and I and telling us that we were the best parents in the whole world.
I wonder how long that will last.
We were able to get second row ringside seats for the show. The wrestlers were
almost close enough to touch!!! Jake spent the whole night cheering, jumping
up and down and screaming for all of his favorites.
We even made it on television. Jake's aunt Terri taped the event and Jake keeps
rewinding to see himself on tv.
The show lastest until 10 pm and we spent the next two hours trying to get Jake
to unwind enough to fall asleep. He can't stop talking about the night!!
As a bonus, the seats that we were sitting in, were commerative WWF "No Way
Out" folding chairs with padded embossed seats and backs and guess what???
Lucky us, we got to take them home. We are now the proud owners of 4 WWF
folding chairs. They will make a lovely addition to our oak dining room set,
don't you think???
Jake's brother Ben came with us and had alot of fun too. He really enjoyed seeing
Jake's reaction and helping us to keep the secret. I think Ben is excited about
the "chair" too.
Now back to the real world. Jake has his bone marrow biopsies/aspirates tomorrow. That means nothing to eat or drink after midnight. Jake has to be
sedated for the procedure. It will take about an hour and they we wait for him to
wake up. He also has an Echocardiogram and EKG scheduled for tomorrow.
We were not able to get his head MRI scheduled for today, so they are doing
that Wednesday morning. I hope to all of the results by Wednesday afternoon.
Please say an extra prayer that the bone marrow tests show either stable or
less disease. We are praying for good news.
Good night. Love, Natalie, Jerry and Jake

Saturday February 16, 2002 11:15 PM CST

It has certainly been a busy two days!!! I will get right to the news that you have
all been waiting for. Jake's PET scan showed NO NEW AREAS OF DISEASE.
This scan shows every area of the body, including organs, bones, muscles etc.
We are thrilled and very thankful that God has continued to keep Jacob well.
His head CT is also clear. The doctor saw a questionable area near the left temple,
but the radiologist stated that he is 95% certain that it is not tumor or disease.
Dr. Brandt is a very concientious, cautious doctor so he wants to do a MRI
of Jake's head on Monday afternoon. We want to make sure we stay one step
ahead of this disease. Jake's bone marrow tests will be on Tuesday and they will
be the final piece of the puzzle. We will continue to pray for favorable results.

Jake had a great time playing with Gramma and Granpa on Thursday. Jake and
I spent 8 hours at the hospital on Friday for testing. Jake developed a leak in his
central line, so we had to have it repaired. This is a minor procedure, but very
time consuming. They repaired the line in the clinic and it is as good as new!!
Jerry came home from Louisville tonight and Jake is so excited to have Daddy home. He really missed his buddy. We have a huge surprised planned for Jake
which some of you may already know about. Jake is a HUGE WWF wrestling
fan ( where did I go wrong? ) The WWF is coming to Milwaukee for a live performance Sunday night. We got tickets and Jerry, Ben and I are taking Jake
to see the show!!! We haven't told Jake yet, he thinks we are going to Milwaukee
for a farm show. We will tell him tomorrow right before the show. We can't wait
to see his reaction. He is going to be sooooo...........excited!! This is a once
in a lifetime opportunity for him. All of his favorites will be there... The Rock,
Triple H, The Hardy Boys, Steve Austin and the list goes on.
Jerry and I are so anxious to see his reaction and share this memorable night with
him. Ben is excited too and we are all finding it difficult to keep it a secret.
I am sure I will have alot to write about on Monday. We are staying at a hotel
Sunday night and will be home sometime Monday afternoon for Jake's MRI.

I better get some sleep!! Have a great weekend.
Thank you for the prayers and positive thoughts!!!
Love, Natalie, Jerry and Jake

Thursday February 14, 2002 9:13 PM CST

Happy Valentine's Day!!
Jacob had a wonderful Valentine's Day. Anyday that Jake gets presents is a
wonderful day. He got two new wrestling figurines from Mom and Dad and a
wrestler from Gramma Dee and Granpa Russ. He got money, an ABC workbook
from Gramma Clarie. He exchanged valentine's at preschool and came home
with a shoebox (mailbox) full of candy and cards. He enjoyed playing with Gramma
and Grandpa today. We went out for dinner tonight and then came home just
in time to watch wrestling!!
Jerry called from Louisville and arrived safe and sound. Jake misses his Dad
already!! He can't wait for Dad to get home on Saturday.
As I write this, Jake is trying to get out of getting ready for bed. He certainly
is full of energy.
Tomorrow is the day we do the PET scan and head CT. Jake can't eat or drink
anything after 7 am Friday and until the test is done after 1:00 pm. I hope I can
keep him occupied and keep his mind off of food. We hope to have the results
by Friday night. It will be torture to wait until Monday for the results. As always,
please keep Jake in your prayers.
Our love and thanks, Natalie, Jerry and Jake

Wednesday February 13, 2002 9:38 PM CST

I can't believe that it is already Wednesday night. I have not caught up after
driving to Chicago for a work meeting on Tuesday. I drove to Milwaukee on
Monday night and stayed with my sister Michele. It was great to see my godson
Max and nephew Jack. They are growing so quickly. Tuesday was a long day
of driving and then sitting through an all day meeting and driving back to Green
Bay. Now it's Jerry's turn to travel. He is leaving at 6:30am on Thursday to attend
the national farm show in Louisville. He will be gone until Saturday night.

Enough about us. Jake is doing great. He finished all of his classmates'
Valentines and is very excited about giving them out tomorrow. He delivered
some flowers and a card to his friend Peggy who babysits for him from time to time.
He was very excited about giving them to her. I had to wait in the car while he
went up to the door and rang the bell alone. My, how fast they grow up!!! Before
we know it, we will be doing the same thing, only he will be picking a girl up at the
door.
Jake's PET scan and head CT scan are scheduled for Friday. The PET
scan will show Jake's entire body and will "light" up areas of disease. Please
pray that Jake's disease continues to decrease and that these tests are "clear."
Next Tuesday is the bone marrow tests and an EKG and Echocardiogram. Since
chemotherapy can be damaging to the heart, we want to be sure that we are
routinely testing his heart's function.
Jake's Gramma Dee and Granpa Russ are coming tomorrow to babysit Jake while
I go to work. They will take Jake to school and they are even sleeping over.
Jake has all kinds of "playing" planned for Gramma.
Thank you again for keeping Jake in your prayers. The next two weeks will be
trying ones for us as we await the results of his tests. We are confident and
hopeful that the news will be good.
Happy Valentine's Day.
Love, Natalie, Jerry and Jake

Monday February 11, 2002 1:03 PM CST

Hello everyone. Jake had a wonderful day yesterday. We went with some
friends sledding and sleigh riding. The woods was about 40 miles from Green Bay.
It was 400 acres of beautiful wooded land with sledding hills, a horse drawn
hay ride, campfires and the warming shack. We spent the entire day there and
Jake loved it. He wanted to keep sledding down the very steep, bumpy hills and
of course he wanted Mom and Dad to try it too. We went on a beautiful hay ride
through the woods and stopped off at one of the campfires and let the kids roast
marshmallows. We headed back on the wagon to the main "camp" where we
cooked hot dogs and drank hot apple cider, and hot chocolate. After the kids ate,
it was off to the sledding hills AGAIN!!! We had some pretty funny pile ups and
mishaps. Everyone enjoyed themselves. What a wonderful way to spend the day!!
Jake was very tired. He fell asleep in the truck on the ride home. We got home
around 6pm, Jake woke up and was full of energy for the evening.
He is very interested in the Olympics, so we have tried to catch the evening events.
He likes the ski jumping and hockey.
We are waiting for the doc to call with Jake's counts, but we expect everything
to be fine. We finished his Neupogen shots on Friday night and the platelet
transfusion went well.
Take care. Natalie

Friday February 8, 2002 4:55 PM CST

Jake had to have a platelet transfusion
today. His other counts are fine, but
the platelets usually take a beating
after chemo. They give him the platelets
at the Clinic, it takes about 2 hours.
Jake gets Benadryl first and it makes him
sleepy. I decided to write this entry while
he is peacefully sleeping in the recliner.
What a little angel.
Take Care, Natalie

Friday February 8, 2002 9:02 AM CST

Oops!! I missed Thursday's entry. Yesterday was a very busy day for me at
work. No excuse!! Jake is doing fine. He has off from school today for a teacher
in service. I guess that means we won't be able to get him out of pajamas all day.
We are waiting for Jake's blood counts today and we hope to finally end the
Neupogen injections. After 13 days of shots, Jake gets a little cranky. He knows
that it will only hurt for a second, but he makes us chase him around the house,
catch him and hold him tight while good old Mom gets to shoot him in the leg.
Jake usually critiques me on how I did. It will be nice to have the weekend free
of shots.
We are waiting to find out the schedule for Jake's tests. We hope they will be
next week. I have to go to Chicago on Tuesday for a work meeting, and Jerry
leaves for Louisville Thursday- Saturday for a farm show. We will have alot to cram
into a short week.
As I am typing this message, Jake came into my office to "scare" me. This is
his favorite thing to do in the morning. He sneaks out of bed and tries to scare
Jerry and I. He really loves it when he gets us good. We are hoping to be able
to Jake sledding this weekend. Some friends of ours who have 4 little girls ( yes,
I said "four") are going to a place that has great hills, a warming shack, sleigh rides
and a bon fire where you can cook hot dogs. The kids can go sledding and tobagooning. The weather is suppose to be mild this weekend and there is plenty
of snow on the hills. Jake can't wait.
We hope you all have a great weekend. Thanks as always for the guest book
entries, the prayers and the loving thoughts. God has blessed us with such
wonderful friends. Our love, Natalie, Jerry and Jake

Wednesday February 6, 2002 12:25 AM CST

I am sorry I missed an entry yesterday. I know that so many of you look
forward to them each day. Everything is fine here. Jake's first day back to
preschool was GREAT!! His teacher welcomed him back and Jake said that a
couple of his friends came up to him, put their arm around him and welcomed
him back as well. He was all a "buzz" when he got home, talking about gym
class, their projects that they are working on and the upcoming Valentine's Day
holiday. The kids are making shoe box mailboxes at school to hold their
Valentine's from their classmates. Jake can't wait. He is giving out Bob the Builder
ones.
Jake's counts today continue to be on the rise. His ANC is now up to 2700 from
1240 on Monday. We finished the Zithromax last night and we will be done with
the IV antibiotic tonight. Hopefully, we can also be through with the Neupogen
injections either tonight or tomorrow. Then life will really feel like it is back to
normal for us. Jake went to his brother Alex's last wrestling match last night.
Alex won his matches. Jake hung out with the high school kids in the bleachers
and then wrestled around with the older boys after the match was done.

I want to update you on Jake's friend Cameron. His mother Kris called me last night
with the sad news that Cameron's disease has relapsed as well. He has disease
in his bone marrow and they are doing an MIBG scan to determine if it is anywhere
else in his body. We are devastated by this news. This horrible disease never
seems to give any of us a BREAK!! Our kids fight so hard for so long only to find
out that this monster has reared its ugly head again. Please, please keep Cameron
and his parents in your prayers. They are faced with many decisions right now,
and none of them are easy. They are like family to us and we are suffering along
with them. I will keep you updated on Cameron's condition from time to time.
With love and gratitude, Natalie

Monday February 4, 2002 1:39 PM CST

What a difference a couple of days makes. When we left the hospital Jake's
counts were still very low. We are continuing to administer IV antibiotics and
his Zithromax antibiotic. Today Jake's counts are great. His ANC is 1240.
Anything above 500 protects Jake from most common illnesses. He feels great
today. His appetite is back, his mood has improved and he has more energy.

He will be going back to preschool tomorrow. This will be his first day back
in almost three weeks. I'm sure it will be like starting all over again. His teacher
and classmates have missed him so much.
We are still waiting for news regarding our friend Cameron. His parents have spent
an agonizing weekend waiting for Cameron's tests to be scheduled. Please
continue to pray for Cameron and his parents. We are hopeful that the tests
will show that Cameron is clear of disease.

We are all going to look at a pick up truck that Jerry may want to buy. I'm sure
Jake will be very helpful with this purchase. Have a great day everyone.
Love, Natalie

Saturday February 2, 2002 4:58 PM CST

WE ARE HOME!!! Jake is doing well. His counts are not great, but they are
on their way up. Dr. Brandt let us come home early. We have to administer
IV antibiotics, neupogen injections and his mouth care meds at home, but we
don't mind. We all do better at home.
On the way home in the car he said that he was thinking about getting
home and playing with all of toys... he must miss them when he is in the hospital.
Jake's left inner ear is red and puffy so we have also added Zithromax, an oral
antibiotic to his "buffet" of meds. We will stay in all weekend and limit his contact
with others and by early next week, he should be back to normal. We are also
hoping that he can return to preschool next week. So far, no sign of the chicken
pox. We are in the process of scheduling his tests. We will update you as the
time draws nearer. The next couple of weeks will be stressful as we await the
tests and most importantly their results. We are praying that the news will be
good.
We hope you all have a wonderful weekend.
Love
Natalie, Jerry and Jake

Friday February 1, 2002 9:53 AM CST

Jacob is doing fine. He has not had another fever since yesterday morning.
He is continuing with the IV antibiotics and he had a good night's sleep. Jerry
stayed at the hospital last night and it's my turn tonight.
Jerry and Jake cuddled together in bed, watched WWF wrestling and at chocolate
chip cookie dough ice cream. This is a ritual for them and Jake so enjoys it.
He always makes the best out of being in the hospital. Today the child life specialist, Kateri is coming in to do crafts or play cards or a game with Jake. She
is wonderful at keeping the kids occupied, especially because they can't leave
their hospital room. It is a nice break for Mom and Dad too.

We had some very worrisome news from the parents of one of Jake's best buddies,
Cameron. He also has neuroblastoma and he and his parents have spent the
best year in constant treatment. Cameron has a spot that has "lit" up on his
bone scan and an elevated LDH level which can be a tumor marker for Neuroblastoma. His parents and doctors are concerned that this could be a sign
of relapse. We know all too well what they are going through at this moment.
They have to wait for more results and to do more tests. I can't tell you how
agonizing this is. Please keep Cameron and his parents Kris and Kevin in your
prayers this weekend. We pray that God will watch over Cameron and give
his parents the strength they need to get through the next few days.

Our love and unending gratitude,
Natalie, Jerry and Jake

Thursday January 31, 2002 10:50 AM CST

Jake woke up at 7:30 am with a temperature
of 100.5. We came to the clinic and he
has been started on IV antibiotics in
addition to getting his platelet and
red blood cell transfusions. He feels
very tired and he aches all over. This
is very common for him each time he has
gotten a fever after chemo. They will
admit him to the hospital when a bed becomes
available. He will continue on IV antibiotics while we await the results of
the blood and urine cultures. Please keep
your fingers crossed that nothing grows in
the cultures. We will keep you updated.
Take care, Natalie

Wednesday January 30, 2002 10:08 PM CST

Fever watch continues!! Jake's blood counts today are very low. He has to
go to the clinic tomorrow for red blood cells and platelet tranfusions. These are
not at all painful, they just take time. Jake can play Nintendo, watch videos,
play cards or whatever he likes while he is being infused. We will spend about
5-6 hours at the clinic. Hopefully, he will continue to be fever free. He spent
an uneventful day at home. When his counts are this low, we encourage him
to take it easy. Sometimes, it actually works.

We are so grateful for your prayers. We would like to ask that you remember Jake's
friends who are also battling this terrible disease; Cameron, Austin, Jack, Hunter,
Michael L, Michael N, Jonathan, Jacob B and Chris. We pray that these families continue to
have the faith and strength they need to fight.
Our love,
Jerry, Natalie and Jake

Tuesday January 29, 2002 9:45 PM CST

Jake woke up this morning already excited about today because he knew his
teacher was coming with his favorite meal.
Jake spent the day with his Gramma Clarie. They put together puzzles, watched
a movie and did preschool workbooks. Jake loves mazes, dot to dot and writing
his letters and numbers. When I got home from work Gramma Dee (my mom)
and her husband Granpa Russ were visiting Jake. They brought him a very large
WWF Wrestling calendar it is about 40" long and each month has a full size
picture of a different wrestler. Walleye and Wrestling in the same day!!! In
Jake's words, "it doesn't get any better than this."
Mrs. Klimek arrived around 5:00 with our wonderful dinner. Her and her family
worked on the meal together and it was delicious. We had breaded walleye,
hash brown potato casserole, mandarin orange jello salad, tartar sauce, homemade
dinner rolls and an apple pie.
Jake could not contain his excitement. I'm not sure what he was more excited
about, the walleye or the visit from his teacher. Jake really adores Mrs. Klimek
and you could tell how happy he was to see her. Jake and Jerry fried the fish
together and Jake tried the first piece. He loved it!! He said that this was his
"best night ever in his whole life." He appreciates so many things in life and his
enthusiasm and excitement over the "little things," make us enjoy them as well.
He couldn't wait to dig into the apple pie....he wanted a big piece with ice cream.
He had such a good day that he didn't even seem to mind having to take medicine
and get his shot tonight. Tomorrow we will check his blood counts. Could we
possibly avoid a hospital stay this round??? Jake's seems to think so.
We hope and pray he is right. We hope you are all having a great week.
Good night. Natalie

Monday January 28, 2002 8:48 PM CST

Jake's counts were fine today. He is staying steady, but we expect his counts
to drop over the next couple of days. His energy level is as high as ever.
He has been wrestling with Dad, playing baseball in the basement with his
Gramma Clarie and taking his turn on the new elliptical workout machine. Needless
to say, he has more endurance than his old Mom.
I wanted to take a moment and thank some dear friends of mine from my years
in Wisconsin Rapids for signing the guestbook and for their prayers, love
and support. It is so great to hear from them and to know that friendships are
timeless. I want all of you to know how much it means to me. Thank you and
I hope you enjoy this website.
Jake is excited because his preschool teacher, Mrs. Klimek is bringing us dinner
tomorrow night. Several of the staff members from his school have been kind
enough to prepare meals for us once or twice a week for the past few months.
It has been wonderful. With working and running back and forth to the clinic and
the hospital, it has been nice to have one less thing to worry about. The kindness
and generosity of others never ceases to amaze us. We truly are blessed.
Mrs. Klimek knows that fish is Jake's favorite food, so she is bringing walleye!!
She also asked him what his favorite dessert was and he told her apple pie.
Hopefully, he will share with Mom and Dad.
Our love and gratitude, Natalie, Jerry and Jake

Sunday January 27, 2002 5:01 PM CST

Just a quick note to let you know that we
have added the pictures from Jake's trip
to Disney. We hope you enjoy them.
Thank you for the great guest book entries
Our love, Jerry, Natalie and Jake

Saturday January 26, 2002 4:24 PM CST

Jake spent Friday night with his Gramma and Grampa Peters. Jerry and I
went out for dinner....the first time since November. Jake didn't want to sleep
over at Gramma's house. He has not slept anywhere else but home since we
returned from New York last April. We have not pushed the issue because we
want him to feel safe and secure. Our evening was later than expected and
Jake fell asleep at Gramma's. He came home this morning and admitted that he
had a great time.
We had a quiet Saturday. The weather is beautiful here (about 50) which is unusual
for January. Jake took the new bike for a spin!! He seems to feeling fine except
for the lingering cold. We will check his blood counts on Monday and see how
quickly he his heading downhill. Thank you for the great guestbook entries. We
all look forward to checking them everyday and we are touched by everyone's
words of support, love and strength. Jake loves getting "the computer mail."
Take care. Natalie, Jerry and Jake

Friday January 25, 2002 1:17 PM CST

I thought I would journal while Jake is
receiving chemo. Jake woke up a little
crabby today...this is usual at this point
during chemo. It will get worse before
it gets better. We try to roll with his
moods and make the best of it.
We stopped by Jake's preschool on the way
to the Clinic. Jake wanted to give his
teacher Mrs. Klimek a picture of him
and Goofy from Florida. Goofy is Mrs.
Klimek's favorite character. We got a
chance to see his preschool classmates.
They all told Jake how much they miss
not seeing him at school. We are hoping
that Jake will be able to return to school
soon.
We have a quiet weekend planned. The weather is suppose to be mild so Jake will
probably be out riding his new bike.
We hope you have a wonderful weekend.
Natalie
here

Thursday January 24, 2002 9:50 PM CST

To quote Jake, "Today was a great day!" Jake was in a great mood all day.
He went to the clinic for chemo today and then afterwards he and Jerry went
shopping for exercise equipment. Jerry and I have decided that we need a
stress reliever so we are buying an elliptical exercise machine. If you don't see
journal entries for a couple of days, I may have overdone it!! Anyway, Jake and
Jerry stopped by a local fitness equipment/cycling store and they saw an awesome
Schwinn silver bike for Jake. Jerry commented that Jake has a birthday coming
up so we'll have to keep it in mind. The owner of the store asked Jerry what
kind of cancer Jake had ( the bald head tends to give it away) The owner was
very taken with Jake and his story. Jerry asked how much the
bike cost and the owner looked and Jake and said, "nothing it belongs to you!!"

Jerry explained that we didn't feel comfortable accepting it, but Wayne insisted
that Jake have it. Naturally, Jake is thrilled and he had to test it out the minute
they got home. We were so touched by this complete stranger's generosity.
Jerry hadn't even started talking to him about purchasing any equipment. Our
lives have been so blessed with wonderful, giving, caring people such as Wayne.
"Thank you" never seems like enough to say, but as Wayne explained, it made
him feel good to do this for Jake and HE thanked us for the opportunity.

Jake will finish this round of chemo tomorrow. He is feeling great, eating us out
of house and home and still has more energy than we could ever hope for.
We can't explain how much joy it gives us when Jake says that he is having
a "great day." We hugged him and told him that he deserves to have a great day
everyday!! It is a simple wish, but it is all that we ask, that our son always
have a great day.
Good night, Natalie

Wednesday January 23, 2002 9:06 AM CST

The past couple of days have been uneventful which is a welcomed change from
last week. Jake is on day three of chemo and so far he seems unaffected by it.
He still has his cold and still can not attend preschool because of the chicken pox
issue. He really misses his classmates and teachers. I stopped at school yesterday and picked up some projects that his teacher was kind enough to put
together for him. He was very excited about having "homework." I certainly hope
that enthusiasm continues when he is a teenager!!! He finished the work last
night and wants me to pick up some more.

Jake will finish chemo on Friday and they we begin the "fever watch." His blood
counts will start to drop on Tuesday or Wednesday of next week and if he gets
a fever he will again have to be hospitalized. We have to also be on the look out
for any chicken pox that may pop up. If Jake breakouts he needs to be admitted
for IV Acyclovir which is a drug that will help to keep the pox under control.

We are in the process of updating the photo album with pictures from Florida. We
hope to have it done in a couple of days.
Thank you all for your notes of love, prayer and encouragement. We are so glad
that we have this website as a way of staying connected to our family and friends.
Keep those prayers coming.
Love, Natalie, Jerry and Jake

Monday January 21, 2002 3:09 PM CST

We had a very busy weekend. My cousin
Nicholas and his friend Mary visited from
Friday to Sunday. Jake had fun riding on
the snowmobile, being pulled on the sled
and enjoying the giant bonfire that Jerry
built in the backyard!! We went out to
dinner for Fish on friday night which is
Jake's favorite meal. He loves to eat
perch and walleye.

Sunday we watched the Packer game. Unfortunately, the game didn't go exactly
as we had hoped. Adam Timmerman who plays
for the Rams is a good friend of ours, so
we had allegiances to both teams. The better team one and now we can cheer whole
heartedly for the Rams.

We started chemo today. Jake's counts aren't great, but good enough to start. He
developed a cold and cough on Saturday, nothing too serious. We will continue with
chemo through Friday. Dr. Brandt came back
from vacation today and Jake was able to
show him our pictures from Florida.
We hope all of you are doing well.
Please continue to keep Jake and his friends
who are also battling this terrible disease
in your prayers.

Thursday January 17, 2002 9:40 PM CST

Just a quick entry to let you know that Jake has still not started this round of
chemo. His platelet count and total ANC are not high enough to start. We will
enjoy the weekend and start on Monday.
Wednesday Jake had the two V-ZIG injections for the chicken pox. He was a real
trooper. He cried, but not as bad as we would have. The worst part is that two
nurses are pushing a needle into each thigh muscle at the same time and the
med is so thick it takes awhile to inject.

After the appointment we went to the hospital pharmacy to pick up some supplies
for home and Jake wanted to stop in the Chapel. He loves to go in there whenever
we are on the first floor of the hospital. He made the sign of the cross with the
holy water ( a little too much holy water ) and then we found a pew to kneel in.
Jake whispered to me that he wanted to go further up front by himself. He said
he wanted to sit closer to the statue of Mary " Baby Jesus' Mom." I am not sure
what he says or prays about, but he kneels there like the angel from God that he
is with his hands folded and head bowed. We stayed for about 15 minutes and
then he was ready to go after one last stop at the holy water.

We went to Target after that to do some shopping and of course to pick up a new
wrestling figure. He loves Target because their snack shop carries Pizza Hut
breadsticks and Icees to drink. We sat in the snack shop while he ate his
breadsticks and then headed home.
Jake will not be going to preschool for at least the next week. We don't know how
many other classmates may come down with the chicken pox. We can't risk
exposing him again!!!!
Tonight his brothers are sleeping over so Jake has playmates and sparring partners.
My cousin Nick is coming from Pennsylvania tomorrow to visit for the weekend.
Jake gets along great with him and he spent quite a bit of time with us when we
were out in New York. We are looking forward to his visit. I imagine are weekend
will be filled with football. GO PACKERS!!!
Have a wonderful weekend. Natalie

Tuesday Jan 15 2002 8:00 pm

Today had it's share of exciting moments. Jake did not start chemo yesterday
because his counts are taking their time recovering. If all goes well, we hope
to start tomorrow. The day started off pretty normal. Jake went to preschool
and in the afternoon we got a call from his teacher telling us that one of Jake's
classmates was out ill today with the chicken pox. Those of you with immuno
suppressed children know what a nightmare the words chicken pox can be.

Jake was in direct contact with this little boy so not only will we start chemo
tomorrow, but Jake has to have a V-Zig injection which is an immunoglobulin that
will hopefully prevent him from getting the pox. Th shot is not fun!! It is a very
thick liquid that has to be injected in his thigh muscle and he gets one in each
leg at the same time. He had the same thing done last July when he was
exposed at the sitter's house. I think my idea of putting him in a plastic bubble
is looking better everyday. We so want him to lead a normal life, but we have
to protect him from so many things that most parents and children find harmless.
He has to have the injections within 72 hours of his contact with the infected child
for maximum effectiveness. Hopefully, all will go well. Never a dull moment!!!

On a lighter note, Jake was able to go sledding in our yard yesterday after school.
We finally have enough snow that it covers the grass. He was having so much fun
and to add to the fun, Dad came up with the bright idea to pull Jake in his sled
behind our snowmobile. I found it difficult to videotape and cover my eyes
at the same time!! Jake kept yellling for Daddy to "go faster." He flipped off the sled twice and thought that was the best part. I am sure his doctor is thrilled that
he is falling off of a sled moving 10 miles hour when his platelet count isn't even
high enough to receive chemo!!!! That's my boys for you.
Have a good night. Natalie

Monday January 14, 2002 6:50pm

Hello everyone,
First, I like to let you know that we have updated a couple of the pictures on this
website. Please take a look when you have time.
I think it's about time that I fill you in on our Florida trip. I don't remember if I told
you that it was COLD!! I know we are from Wisconsin ( the frozen tundra ), but
when I go to Florida I expect it to be warmer than 50-60 degrees during the day
and 30-40 degrees at night. Of course we didn't pack many warm clothes...again
we were going to FLORIDA!!!! We had to buy a stocking cap and gloves for Jake
and we wore our sweatshirts and jeans 90% of the time.

Jake and Ben were disappointed that they couldn't swim, but they made the best
of it. One of the bathrooms in our condo at a large whirlpool tub. Everynight Jake
and Ben would put their swimming suits on and hop in. We visited as many
of the parks as time would allow. We started on Saturday the 5th by having
a wonderful breakfast at the Swan and Dolphin hotel. It was breakfast with the
characters. Jake saw Goofy and Pluto. The characters posed for pics and signed
autographs. Jake was star struck. We had breakfast with a group of families that
we had met while in New York. They had planned a trip together and we coordinated Jake's Make A Wish with their schedule. It was so great to see them
all again. We have not been to New York since early August.

The group included Rich who works at the Ronald McDonald house and is Jake's
best buddy, Sue who also works their and Steve and Rich Roach who volunteer
their time at the House. There was also the Matthews, Oldenburg, Lewandowski,
Naselli and other families that we have grown close to over the past year. The
kids had a wonderful time getting reacquainted and it was nice for Jerry and I to
be with families who know what we are going through on a day to day basis.

After breakfast we went to Disney's Animal Kingdom and then off to MGM. The
kids loved the safari ride and river raft where some of us got very wet. The parks
were not that busy and we all had special passes that allowed us to go through
the express entrance of each attraction. What a wonderful advantage that was.
Our kids didn't have to wait in line for anything. If you have ever seen a group of
kids who have undergone chemo, narcotics and numerous meds, you can appreciate how wonderful it was to not have to wait.

Sunday we were off to the Magic Kingdom at Disney. Jake loved the Buzz Lightyear
ride and we went on it 3 times. He got to meet Mickey and Minnie and again posed
for pics and autographs. Sunday night we met everyone at the Hard Rock Cafe for
dinner. Our group was made up of 33 people. Thank goodness it's acceptable
to loud at the Hard Rock. Jerry and I really relaxed that evening ( the margaritas
helped)

Monday we went to Island of Adventure. It was chilly that day and we had a little
rain. The boys liked this park the best. There was the Hulk rollercoaster that
Alex and Ben went on 3 times and the Spiderman virtual reality ride that the
whole family loved. We had dinner with my Grandpop Nick. He is 87 years old
and lives in Orlando. We went to Charley's Steak House. It was a pretty upscale
restaurant with the best steaks we have ever had. The boys enjoyed the special
treat. Grandpop was glad to see us and was happy he could spend some time
with Jake.

Tuesday it was off to Universal Studios. The weather was beautiful and we enjoyed
our day. Jake met Woody Woodpecker, Scooby Doo, SpongeBob Squarepants,
Laurel and Hardy and Curious George. In the evening we relaxed back at the condo. Our trip seemed to fly by.
Wednesday was our day to leave for home. Our flight didn't leave Orlando until
7 pm so we did some shopping and took the boys miniature golfing. It's one of
Jake's favorite things to do and he is pretty good at it. He got two hole in ones.
We had a hard time beating his score. Our flight home was uneventful. We arrived
in Green Bay at 10:15 pm and we were met by the limo. We rode home in
style.

We are so thankful to the Make A Wish organization and the Give Kids the World
Village for giving us such a memorable trip. We were just looking at the photos
and video today. This trip will brings us much joy for years to come.

Sunday, January 13, 2002 at 09:37 AM (CST)

I am finally taking the time to sit and try to recount our trip to Disney for everyone.
We had a great time.
Our trip started very early on Friday the 4th. A long white limo picked us up at
home at 5:00 am. It was the boys' first time in a limo. They could not believe
how big it was inside. Our flight from Green Bay to Milwaukee was a quick 20
minutes. We had a little layover in Milw and left there at 8:40 am. Jake was
wide awake from 4:15 am. He couldn't wait to get to Florida. We flew Midwest
Express Airlines and we really enjoyed the roomier planes and extras that they
are know for.

We arrived in Orlando right on time and were met by a representative from the
Give Kids the World Village. He directed us to our rental minivan and we were on
our way to the Village. We were all anxious to get settled in. The Village is
a spectacular place created with children in mind. When we arrived, Jake was
greeted by the front office staff. He was given a stuffed Mickey Mouse, a tee shirt
and the choice of signed caps. He chose a Tampa Bay hat signed by John Lynch.
(His brother Alex helped with the choice.) After a brief orientation, we went to
our villa. We had a two bedroom, two bath condo that was perfect. The village
is made up of 96 housing units and many other main buildings. The buildings are
done in a fairy tale style. The Ice Cream Palace has cones and cherries and is
shaped like large scoops of ice cream. The Gingerbread House is covered outside
with stucco gumdrops and peppermints.
There is a movie theater, a train station with video games and a large scale model
train set.

Jake was treated like a celebrity!! The reservation was in his name and the staff
told him that as long as he was there he was "King Jacob." Just what we needed,
Jake on a power trip. All of the chairs and tables are child throughout the village
are child size. Everything is geared towards the "wish child." The village plans
daily activities, movies, magic shows and so much more. We really could have
spent the whole trip right there.
I think that's enough for now. I will journal later with the rest of our adventure.
Today is the Packer/ San Fran 49er's playoff game. It's like a national
holiday around Green Bay.

Friday, January 11, 2002 at 02:10 PM (CST)

We wanted to send a quick note to let everyone know that we returned safely
from our trip very late on Wednesday night. We were not able to access the
internet while gone and bringing the laptop (one more piece of luggage) was
unthinkable.
I will tell you briefly that we had a wonderful time. Jake so enjoyed the trip. Alex
and Ben were so happy for Jake and shared in his excitement throughout the trip.
I promise to email later with all of the details of the Disney vacation.

Wednesday, January 02, 2002 at 11:42 PM (CST)

Well, I knew it would happen eventually.... I have fallen behind on my journal
entries. Jake is doing fine!!! We have been so busy this week that I haven't had
much time to sit and write.
New Year's eve was quiet for us. We stayed at home, watched a movie and the
ball drop at Times Square. We thought it only fitting to celebrate the New Year
on east coast time since New York felt like our second home in 2001. Oh and
Jerry and I didn't think we could stay up until midnight. We were right.

We have spent the past few days getting ready for our trip. We leave very early
on Friday. Our flight leaves Green Bay at 6:15 AM. It should be interesting.
The entire family is excited and looking forward to some warmer weather. We will
get to visit my grandfather Nick Caruso who lives in Orlando. We haven't seen him
since the summer and I know he is looking forward to seeing Jake.

I don't know if we will have access to a computer for me to post any entries. If not,
I will catch everyone up when we return.
Medically, Jake is doing well. We are continuing with his Neupogen injections longer than usual in order to keep his white blood count high. We don't want
him vulnerable to any illnesses while traveling. He will also get a platelet transfusion
tomorrow because they are the last recover after chemotherapy. His platelets need
to be at a certain level before he is able to fly. The doctor worries about nose bleeds
or hemorraghing in the higher altitudes. We are trying to cover every base so that
Jake not only has a fun, but a safe trip as well.
We hope all of you are doing well and having a wonderful start to the New Year.
Take care. Natalie

Monday, December 31, 2001 at 09:06 AM (CST)

Jake spent another quiet day at home on Sunday. He continues to get even
more energetic (if that's possible) He watched football with Dad and his brother
Alex and played with his new Bob the Builder game on the laptop. The Packers
won, so everyone was in a good mood when I got home from shopping. I am
trying to frantically get everything and everyone ready to leave for Orlando early
Friday morning.

We are waiting to hear what Jake's blood counts are today. We are sure that
they are beginning to recover from the chemo. We plan on spending a quiet
New Year's eve at home. We do not want to risk Jake coming in contact with
anyone who may be ill. This is a tough time of year...cold and flu season and
with the holidays everyone is coming in contact with so many other people that
you never know who may be contagious. Jake is looking forward to banging pots
and pans at midnight. This is a long standing tradition with my family. I just hope
we can stay up that long. I'm sure Jake can!!!

We wish you and your families a very happy, healthy and safe New Year.
Natalie

Saturday, December 29, 2001 at 08:42 PM (CST)

Today was a very quiet day spent at home for us. It was very cold outside so
we didn't mind staying in. As a matter of fact, Jake stayed in his pajamas ALL DAY
We have had no problems administering his IV antibiotics and Jake had a very
good night sleep last night.
He is full of energy today. We can not get him to stop running around, playing
football and trying to jump off of the furniture. We don't know how he does it!!
I know how I would feel if my blood counts were as low as his.
Jerry went to watch Alex (16 yrs) wrestle today at a tournament in Michigan. Alex
just joined about 2 weeks ago and this was his first match. Jake really wanted
to go, but he'll have to wait a couple of weeks before going into a crowded gym.
Jerry videotaped the matches and Jake was able to watch his brother.
There is not much else to report ( nice for a change)
Have a great weekend.
Natalie

Friday, December 28, 2001 at 06:38 PM (CST)

I everyone. Sorry I was unable to make an entry yesterday. Jake was discharged
from the hospital this afternoon. His counts are still very, very low but Dr. Brandt
agreed to let us finish the iv antibiotic therapy at home. Jake has alot of energy
and is eating well so he was starting to get a little "stir crazy" in the hospital room.
His fever lasted through Wednesday night and must have broke sometime early
Thursday am. Jerry said that Jake spent a very restless night on Wednesday with
labored breathing and a rapid heart rate due to the high temperature. Thankfully,
the blood and urine cultures came back negative after 36 hours which means that
he did not have a documented bacterial or fungal infection. By lunch time on Thursday he was back to his normal, playful self.

We need to be very careful the next few days to make sure that he stays away
from crowds and does not come in contact with any ill people. We will be staying
at home until his counts are checked on Monday. We don't want to risk a chance
of an infection so close to Jake's Make A Wish trip. For those of you who don't
know, we are scheduled to leave next Friday for Orlando. We will be spending
5 nights and 6 days there and we hope to see all of the sights. Jake is very
excited about meeting Mickey Mouse.
Thank you for keeping us in your prayers.

Wednesday, December 26, 2001 at 05:56 PM (CST)

Today Jake needed to have a platelet
and red blood cell transfusion at the
Clinic. His counts have reached rock bottom. He seems to be feeling fine.
His transfusions took about 4 hours and
while we were at the clinic, he developed
a fever. We are admitting him to the hospital and starting iv antibiotics.
We thought this might happen but we feel
so fortunate to have spent the Christmas
holiday with Jake in good health.

He will probably be in the hospital for
about three days provided that the blood
cultures are negative and the fever does
not persist. Please pray for a speedy
and uncomplicated stay.
Natalie

Tuesday, December 25, 2001 at 08:21 PM (CST)

Merry Christmas to all of you!!! I can't believe that it is Christmas night already.
The passed four days have flown by for us. I will try to recap them for you.
Saturday evening we went to Jerry's parents house for dinner and to open gifts.
Jake was so anxious, he could barely eat. As adults, it is hard for us to remember
how painful it is for a small child to sit through a meal while a pile of presents
sit under the Christmas tree. He was as patient as any 4 year old could be.

Then the time finally came for him to open his first gift!!! I don't even remember what
it was, but what joy we all felt watching him open it with such anticipation and
excitement. He was thankful and grateful for all that he received. Jake has a
wonderful way of making the gift giver feel so special!!! We had a wonderful evening
with Jerry's family. We put Jake to bed and the excitement was already building
for Christmas with my family on Sunday.

We awoke Sunday morning to the sight of snow. It was our first snow of the season. We packed up the car and started out on our 2 hour drive to Wisconsin Rapids. Jake was counting the miles!! We had a wonderful time visiting with Gramma, Grampa, the aunts, uncles and all of Jake's cousins. It is a houseful!! Another dinner that seem to last forever for the kids and then the big moment arrived. We heard some bells and footsteps and a kind old man in a red suit and white beard walked into the room. The kids were aghast. Santa began giving out the gifts. What a scene!! Did I mention that my mom has 5 grandchilren (all boys)
under the age of 5 plus 4 teenage grandchildren Need I say more. We had a wonderful day and we were so thankful that Jake was blessed with good health for the weekend to enjoy and celebrate with our families.

Christmas Eve was a quiet day spent a home with just us and the boys. All but
Jake attended Christmas mass in the evening. Jake's counts were dropping and
the crowds at mass would pose too much of a threat to him. We had a quiet
family dinner and watched a movie together. No small feat when you have two
teenagers who are usually out and about with friends. Jake wrote his note to
Santa, set out cookies and milk and hurried off to bed.
Jake awoke this morning at 7:30 and jumped up shouting "I'm the first one up!"
" Wake up! it's Christmas!" He ran downstairs to the tree and we heard a scream
of excitement. He came back upstairs shouting, "hurry, hurry, Santa was here!"
He tore open his gifts so quickly we not sure how much we were able to catch
on video. He turned to each of us and told us that this was the best Christmas
EVER!!! I can't tell you how much it meant to us to be able to celebrate this special
day at HOME with our son. We received the greatest of gifts today. The gifts
of our son's laughter, love and joy.
We truly wish all of you the many joys of this season.
Love,
Natalie, Jerry, Jake, Alex and Ben

Saturday, December 22, 2001 at 09:05 AM (CST)

Jake completed his final day of chemo on yesterday. I am happy to report that
this 5 day cycle has been uneventful. Jake is feeling great...except for a little
crankiness. Yesterday was the big event!! His preschool Christmas concert.
I think I was more excited than the kids. Jerry had to keep reminding me to
calm down. The entire program lasted all of 20 minutes, but the kids were
adorable. They had all worked so hard learning 5 or six songs and they sang
proudly. They were all dressed in their holiday best and the audienced was filled
with parents, grandparents and friends. Of course, Jake had the largest turn out.
I think there were 10 of us there to see him. His face lit up when he walked into
the room and saw all of us sitting there. It was a day I will never forget.

After the concert it was off to clinic for chemo. The chemo session lasts about
2 hours. Jake keeps busy by doing ABC and dot to dot workbooks or playing
video games or teasing the nurses. Everyone at the clinic was in the holiday
spirit and they weren't very busy with patients, so Jake got the star treatment.
He loved all of the attention!!

Jake's brothers Ben and Alex came over last night to spend the weekend with us.
Jake loves playing with Ben and he thinks is big brother Alex is "cool." We wrapped
Christmas gifts, watched a DVD movie and enjoyed our quiet evening at home.
The Christmas hoopla starts today. We are going to Jerry's parents house for
dinner and gift opening tonight and then it is off to Wisconsin Rapids to be with
my family on Sunday. We can't wait to see everyone and spend the Christmas
holiday with our families. It means even more to us after spending last Christmas
at Children's Hospital for Jake's stem cell transplant.

Thank you all for your notes and well wishes. We wish all of you a wonderful
Christmas and a happy and healthy New Year.
Our love,
Natalie, Jerry, Alex, Ben and Jake

Wednesday, December 19, 2001 at 08:05 PM (CST)

Well, I am happy to report that there is not much new with us. Jake has
completed day three of chemo and by all accounts he is feeling fine. He seems
at time to be even a little too energetic. He is enjoying this week at preschool
filled with all of the Christmas activities. Today he brought home a card and two
special gifts that he had made for Jerry and I. He was so excited to share them
with us. He told us that "they were made with love." One was an ormanent
made out of yarn and decorated like a tree and the other was a snowman magnet
with a picture of Jake from preschool inside the circle. Jerry and I could barely
hold back our tears. Jake was so excited that we were surprised. They
truly our the best Christmas gifts we could ever receive.

We took a ride tonight and looked at all of the beautiful Christmas lights. Jake is
getting more excited each day. We have been sharing with him the real spirit
of Christmas and the birth of Jesus. He really understands!!! The other day we
were gathering gifts together for a needy family and Jake told me that he felt
really sad for the children who don't have any homes or parents. He told us
that he has so much in his life and he feels bad for the poor and needy kids.
He has such a big and kind heart. He never mentions the fact that he has cancer
or tries to use that in any way as an excuse. If only our children could stay this
innocent.

Only two more days until the big preschool Christmas concert. Jake has certainly
been practicing his singing. He has impressed everyone with his ability to sing
The Twelves Days of Christmas by memory. We are so grateful for all that he has
gained from attending St. John's preschool. Well, I need to get back to Jake. It
sounds like he his playing baseball with Dad in the HOUSE!! Boys will be boys.
Goodnight.

Tuesday, December 18, 2001 at 09:14 AM (CST)

Jake started chemo on Monday. His platelet count rose from 36,000 on Friday
to 70,000 on Monday so we were able to proceed. The chemo is done at the
clinic and only takes about 2 hrs to complete. Jake usually watches a movie
or plays Nintendo or on the computer while the chemo is being infused.
He is doing extremely well otherwise. He continues to gain weight. He is up
to 43 lbs. He will be able to attend preschool this week and his Christmas
concert on Friday. We are grateful that the treatments that we have chosen for
Jake since his relapse in August have allowed him on the most part to lead a
normal life. His "quality" of life is as important to us as ridding him of this
horrible disease.

Sunday, December 16, 2001 at 10:14 PM (CST)

What a GREAT day. We were finally able to coordinate a visit between us
and the Kerwin family from Milwaukee. Cameron Kerwin is Jake's best buddy
who also has Neuroblastoma. Cameron is an adorable, loving 3 1/2 year old and
Jake couldn't wait to see him. They came to visit us today and we watched
the Packer game together. They boys played for about 6 hours. They played
with Thomas the Tank trains, football, rescue heroes, memory and ran around
the rest of the time. It was so good to see them both feeling well and able to
play like all young boys should be able to do.

We are happy for Cameron and his family that they will be able to spend the holidays at home this year. Cameron was diagnosed last December and they
immediately went to New York for all his treatment. They sacrificed so much,
especially spending the holidays at home with their loved ones.

Jake will hopefully start his chemo tomorrow depending on his platelet count.
He has a busy holiday week ahead at school, so he doesn't want to miss any of
it.
We hope everyone had a nice weekend and is looking forward to Christmas.
Thank you for keeping us in your hearts and prayers.

Saturday, December 15, 2001 at 11:33 AM (CST)

Just a quick note to let you know that Jake's brother Ben was able to download
some photos. Sorry they aren't more recent than Halloween.... Mom's been a
little slow getting film developed. Just picture Jake the same, but without hair.
Thanks to Ben for his help with the photos. I guess teenagers ARE smarter
than their parents.

Friday, December 14, 2001 at 05:52 PM (CST)

Hi everyone. We want to thank all of you for accessing the website and signing
in on the guestbook. It is great hearing from you and we are so glad that you
appreciate being able to keep in touch with Jake.
Today was Jake's day to bring the treat to preschool and for Mom to be parent
helper. Jake was so excited. The kids love having their parents come to class
as helpers. Time to "show off " I guess. I was able to hear them practice for their
upcoming Christmas concert...what entertainers!!!! We did an art project, read
a Christmas story and played hopscotch. The 2 1/2 hours flew by. It was fun
to sit with the kids at snack time and learn more about them. They are very
"chatty" at this age. I am so thankful to have the opportunity to participate in
this special part of Jake's life. We are looking forward to a busy weekend. We
know that Jake will be feeling well, so we want to make the most of it. Jake
and I did some last minute shopping after school and we will be frosting our
Christmas cookies tonight. We hope all of you have a wonderful weekend and
are able to enjoy this holiday season.

Thursday, December 13, 2001 at 08:26 PM (CST)

Hi everyone. We met with Dr. Brandt today to discuss Jake's test results including
the urine results that we were waiting for. We had some very good news!!
The two substances that are detected at high levels in the urine when Neuroblastoma is present is HVA and VMA. Jake's were both elevated above
normal range in October and November. The urine results for December show
a decrease in both the HVA and VMA. This result along with the bone marrow
biopsies/ aspirates which show less disease and the PET scan which shows
no new areas disease, Dr. Brandt feels comfortable concluding that the current
chemo agents Cytoxan/ Topotecan are having a positive effect on Jake's Neuroblastoma. Needless to say we are thrilled. We also found out today that
we (Jerry and I) misunderstood the results of Jake's bone marrow tests. We thought
the pathologist had reported a decrease in disease by 25% when in reality, there
is only 25% disease left in his bone marrow from what was there two months ago.
YIPPEE!!!!! We give all of the credit to Jake and his amazing body. To make
a long story short, we will be starting round 3 of the Cytoxan/Topotecan on Monday.
We are relieved because we know that Jake tolerates this chemo well and he should
be fine for Christmas. It is so amazing how much the small victories mean to us.

We are sure that most of you must think, how can they be so excited about the
fact that the cancer is still there. We know how difficult this disease is to fight
and we have to fight it one step at a time. We are thankful that the disease is
responding to the chemo and that Jake can hopefully have a normal Christmas.
We hope to have a good weekend filled with Christmas activities and hopefully
and visit with Jake's good friend Cameron from Milwaukee. Cameron and Jake
spent alot of time together in New York and haven't seen each other since August.
It will be interesting to see them together.... Cameron has a full head since the
last time we saw him and Jake has lost his full head of hair since then. We are
sure that they will have a great time together.

Thank you again for your prayers and support. We know it is helping!!

Wednesday, December 12, 2001 at 10:16 AM (CST)

Jake had a great day yesterday. Despite low blood counts (still recovering from
chemo) he has more energy than Jerry and I together. He spent the morning with
his dad and then went to preschool at noon. He decided to put a Santa figurine
in the "mystery box." His three clues were; he has a white beard, wears a red
suit and comes down the chimney. He must be in the Christmas spirit and
decided to go easy on his classmates. They guessed the contents after one clue.

Jake had gym and music class yesterday. In gym they hit a soccer ball with
hockey sticks...picture 20 four and five year olds wielding hockey sticks. Their
teacher is a SAINT. In music class they were joined by their upper classman
"buddies." The preschoolers requested songs and the older children sang for them.
Jake really enjoys his school and his friends. It is amazing how unaffected they
all are by Jake's illness. They don't even notice his baldness....they tell him that
they like his haircut!

I arrived home from work to find Jerry and Jake playing baseball in the front yard.
I can't believe that on December 11th in Wisconsin, we still have a green lawn
and not a white one. Jake loves to pitch to his dad and play all of the fielding
positions. He is a very talented athlete. Jerry finally called it quits! I don't think
anyone has told Jake that he is suppose to feel sluggish and tired from his low
counts, he is like the Energizer bunny.

We have a meeting with Dr. Brandt on Thursday to discuss our next treatment
phase. Jake will not be ready for any chemo until Monday due to the slow
recovery of his blood counts. We are exploring the possibility of higher dose
chemo in conjunction with the antibodies at Sloan in New York. It is very difficult
to be faced with such hard decisions. There is no clear cut treatment plan for
children who have relapsed. We need to educate ourselves with the options
available and hope and pray that we choose one that will be effective against the
cancer but not too risky for Jake. We are praying for strength and guidance as
always.

Thank you for the entries into the guestbook. We are so happy that we have
this avenue available to us to keep you all informed. Your support, thoughts and
prayers are of great comfort to us. We hope to have a scanner soon so that we
may include some recent pics of Jake.
Until next time.
Natalie

Monday, December 10, 2001 at 06:42 PM (CST)

Hi everyone,
We are very excited to be able to offer a web page for Jacob to all of you. We
hope to be able to keep up with journal entries so that you may all be kept
updated with Jake's activities.
Jake is feeling good today. He has been running around all day. He went to
preschool today and got to bring home the "mystery box." This is a "huge"
responsibility in preschool life. The child that gets the box has to put an object
in it and make up three clues and return the box to school the next day. The
teacher helps him read his three clues and the class tries to guess the object.
Jake takes this very, very seriously. He loves to stump his classmates. We
have not decided on an object yet.
We are waiting for urine results from the lab to find out whether or not we will be
proceeding with the same chemo ( Cytoxan/ Topotecan) or changing to something
else.
As some of you may know, Jake's test results have left us with mixed feelings.
We are thankful that there are no new areas of disease, but his bone marrow
disease has not responded as positively as we would have hoped. We have faith
that we will find the right "formula" that will work for Jake. We hope to have a plan
in place by the middle of the week.
We have been busy getting ready for Xmas. Jake is really enjoying all of the
decorating, baking, tree trimming and of course singing of Christmas songs. He
learned a few in school and serenades us each evening.
We have been blessed with a very special little boy and we marvel each day at
his strength and determination.

Natalie

Monday, December 10, 2001 at 06:39 PM (CST)

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