History

Journal History

Tuesday, November 28, 2006 2:44 PM CST

Monday, October 23, 2006 1:59 PM CDT

Lance,
It is so hard to believe that three years ago today I held you while you took your last breath. The smile on your face when you went to heaven was evidence you were finally at peace and pain free.
There are just no words to express how much I miss you and how much I ache..
this ache has not gotten better with time, if anything I miss you more as time passes.
I love you so so very much baby.

Mom

Saturday, May 13, 2006 2:10 PM CDT

Hi Buddy,
Tomorrow will be the third Mother's day without you. I dont even have the words anymore to describe how agonizing it is here without you.
I love you and miss you so much I just ache all over.
Seems like life has just turned into a cruel joke and keep getting worse.
How I wish I could be where you are.

Love,
Mom

I found the following poem on Nick Snow's guestbook, seems fitting.

A Mother's Day Wish From Heaven

Dear Mr. Hallmark,

I am writing to you from heaven, and though it must appear
A rather strange 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 me 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 their 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.

I love you Lance

Monday, March 13, 2006 5:22 PM CST

Happy 16th Birthday my darlin Lance!~
I miss you so much.. and I have so many memories of "this day" 16 yrs ago.
I know you are driving that "Ferrari" in heaven for your 16th..

Everyone misses you and loves you so very much, you have touched thousands of people around the world with your smile and your kindness..

I LOVE YOU LANCE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Love
Mommy

Friday, March 3rd, 2006

A SPECIAL THANK YOU TO ALL OF YOU WHO WERE GUIDED TO LANCE'S WEBSITE THRU iTUNES AND SIGNED HIS GUESTBOOK!!!!!!! XOXOX!

UPDATE RE iTUNES:

There was an article in the Washington Post that was published in regards to the iMixes on iTunes
I NEVER IMAGINED that making a playlist of songs would ever in my wildest dreams end up in an article such as this.. THANK YOU HOWARD for your interest and for publishing the article, helping to get the name NEUROBLASTOMA out among so many readers! Here is the Link to the site
http://www.washingtonpost.com/wp-dyn/content/article/2006/03/01/AR2006030100635.html?referrer=emailarticle

THANK YOU TO ALL WHO HAVE WRITTEN!!!!!!!
I am "stunned" Thank you..

Another Christmas has come and gone without you Lance, this was the third, and it doesnt get any easier.. I managed to decorate the house this year though, so I hope you could see it from heaven.. Christmas will never be the same with out you buddy..
I miss you and love you with every cell of my being..

Love,
Mom

Monday, November 21, 2005 6:36 PM CST

Hi buddy,
It's been a while since I updated your page, I have not been able to do it for a long time, even for your heavenly anniversary.
The holidays are too quickly approaching it seems.. and I am "trying" to do the things I used to do when you were here with us, but it seems like I get caught in quicksand and sink sometimes. Lance, I miss you beyond any words can ever express..
Ive been copying your videos to dvd for your dad.. and so I have seen a lot of video footage lately, and just recently saw the video of our first Christmas on Canter Lane. Who would have thought then that you would no longer be with us..
There is a wound so deep in me sometimes it feels I cant breathe.. I miss you so so badly.
I know a "new" angel just joined you there, his name is Jon Watson.. I know you will show him around to his new heavenly home.

Oh Lance, I miss you!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Love
Mommy

Saturday, April 23, 2005 12:02 AM CDT

Hey buddy,
Today it has been a year and a half since I last held you.
I am so proud of you my sweet angel, I know you are doing great work in heaven and that your ever radiant smile is shining once again!
I miss you intensely buddy, thank you for gracing me with your love and companionship for 13-1/2 yrs and into eternity.
You are the most precious being in my world Lance.
I love you so very very much.

Love,
Mom

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Tuesday, April 5, 2005 1:01 PM CDT

As the one and a half year mark approaches with out Lance, I am finding myself very tearful and thinking "this seems so unreal" "it's going to be forever till I can be with him again" and worst of all, "I can't believe I can not hold my baby!"
There are days when I can think of my precious Lance and smile, no tears shed.. but then there are days like this when the mere thought of him chokes me up and the tears start welling up.
The following is a song that was shared by another NB-Angel mom in our support group and now I seem to be hearing it everywhere I go.

HOMESICK by Mercy Me

You're in a better place, I've heard a thousand times
And at atleast a thousand times I've rejoiced for you
But the reason why I'm broke, the reason why I cry
Is how long must I wait to be with you.

I close my eyes and I see your face
If home is where my heart is then I'm out of place
Lord, won't you give me strength to make it through somehow
I've never been more homesick then now.

Help me Lord cause I don't understand your ways
The reazon why I wonder if I'll ever know
But, even if you showed me, the hurt would be the same
Cause I'm still here so far away from home.

I close my eyes and I see your face
If home's where the heart is then I'm out of place
Lord, won't you give me strength to make it through somehow
I've never been more homesick then now.

In Christ, there are no goodbyes
And in Christ, there is no end
SO I'll hold onto Jesus with all that I have
To see you again
To see you again

And I close my eyes and I see your face
If home's where the heart is then I'm out of place
Lord, won't you give me strength to make it through somehow
Won't you give me strength to make it thru somehow.

I love you my precious Lance.

Mom

Saturday, March 19, 2005 12:31 AM CST

Happy Birthday Lance!!!
All the collages on this site are a tribute to YOU buddy!!! You are my hero Lance :)
I miss you so much, I know that you are well now and you are doing your heavenly work! You are my inspiration Lance, you were an angel on earth and now a special angel above.
Please watch over all of our children and adults still fighting the Neuroblastoma monster.
I know when it is time to take Sassy, your beloved cat up to heaven with you, you will take special care of her, I do not think the wait will be much longer.
I love you Lance, thank you for being here with us for 13-1/2 years!! What a blessing to be your mother.

Mom

Friday, February 18, 2005 6:54 PM CST

Hi all,
Well it has been an incredibly long time since I have updated this page.
So much has happened, as some of you know. Since Lance's death, my health took a turn for the worse after being on Xanax or some sort of benzodiapene (valium, ativan, etc.) for over 4 yrs since Lance's diagnosis of Cancer. They are one of the hardest drugs to detox from especially after being in my system for so long, ad a few glasses of wine a night or mixed drinks on top of that and its a very dangerous mix. I entered rehab to detox my system and get back to being healthy again. I was away for a little over a month and am happy to report I am feeling wonderful, eating 3 meals a day, exercising and dealing with grief in a much more constructive way then trying to numb it with a pill or a glass of wine, much much better!~ I know that Lancie is smiling on his mommy finally. I miss him TERRIBLY and at times still can not believe I can not touch him physically, but I do know that he is here with me, I can feel him all the time since all the "numbing chemicals" (which by the way didnt numb at all!) are out of my system. Life is good, although I will never stop missing my baby.
I am going to enroll in school to get a doctorate degree in religious studies, that will take up to 4 yrs. Hey, better late then never right? It is something that Lance was very excited about and now I am able to do it since I can get out of bed early in the morning once again.

All is well in our house and Eric and I are planning on renewing our wedding vows and taking a "much needed" honeymoon that we never got. We will be going to an island in Tahiti and plan on renewing our vows on either March 20 or April 21st. We have narrowed down these two dates with our wonderful minister Mary Morrissey, and will know shortly depending on our financial status, which obviously is a huge factor in us taking our honeymoon :)

Well thats it for now, Dan and I have been playing telephone tag, so I am not quite sure how he is, although Berit, his beauty of a girlfriend says he is doing ok.. next month will be difficult on all who loved Lance as it would have been his 15th birthday on March 13th. We will be celebrating by watching his little sister swim for him in a meet and releasing balloons, and setting off fireworks over the lake. Happy birthday my best little buddy in the whole wide world!!!! I love you so much Lance!

Love,
Mom

Thursday, September 2, 2004 7:36 PM CDT

Hi all.
I am sorry that my journal entry that I had started on Aug 3rd or so... and then I had to run.. but the date got published.. with the "old" entry of Lance's bday coming up, etc... back in March... so obviously.. there a couple people who were concerned about the NEW date... but an entry that was made a long time ago.. so NO I am not loosing my mind, I do not think Lance's bday is approaching, and its "definately" not coming up on his 4 months of being an angel...

No.. the reality is, next month, October 23rd will be his Angel Birthday of One year... gaining the wings he so earned.. along with the other children that I know that have gained their wings thru this "terrorist" (Thank you Maria!xox) called NEUROBLASTOMA. Cancer sucks beyond belief.. and its sad to see certain funds that could be allocated to find the "cure" for our children, elders, brothers, sisters, mothers, fathers, family and friends that get stricken by the monster called Cancer...

Not sure about them, but I am sitting here scratching my head and crying.. why. why. why.

Autumn is to quickly approaching... for some reason, I always "knew" in my heart that Lance would leave in Autumn, he even wrote it in his "personal journal" .. "mom knows it will be Autumn when I leave this earth" not his exact words, since I havent seen the journal since right after he died, ut I do very distinctly reading "mom knows".

There have been so many HUGE ups and so many HUGE downs... you can feel like, "OK" I can do this...
then "BAM"!!!! Blindsided by that fricken tidal wave we call grief, it wipes you out again, and you feel your head again stuck in the sand, with your legs still kicking!...
And it is a slow suffocation of feeling "suffocation".

I have a very large prayer reguest...
Please PRAY hard for my friend Austin, and his wife Helen.
Austin and Helen are true angels on earth.. and Austin is a 27 yr old NB patient.. who so .. so reminds me of my precious Lance. PURE GRACE... and pure love...
Austin and Helen are a HUGE part of my heart, there is a very very deep part of one's soul that only a certain "few" in our lives can "touch".. and for this beautiful "newlywed" couple, they have touched that part of me. And there are so many others... that "KNOW".

Anyway, Lance's dad is on his way over to pick up Lance's ashes, to be released, along with his ferrets, Neenatu, Snowflake and Snickerdoodle.

HOw he loved his animals... how he loved his friends.. family, ... Ohhh.. how LANCE LOVED!!!!!!!!!

Thank you buddy for sharing your life with me. And thank you my sweet little man for being "the vehicle" to which you got to this earth in, to only teach us, who love you and know you, soooooo much about life... and "pure, undconditional" love.

Thank you Lance,
I love you with every cell of my being, ...
Mommy

Friday, the 13th of August (yikes)

This is a hard time right now. We just passed the 4 month mark of Lance's death and now we are approaching his birth, March 13th.
The utter agony of missing him is suffocating and and times just plain debilitating.
Lance defined who I was when he was born as "mother.. when he got sick, it redefined me as "mother, nurse, doctor, advocate, caretaker, and best friend".
And now he is gone.. I am not sure who I am.
It's all baby steps and I know someday this raw agony of missing him will subside.. but right now it just plain sucks beyond belief.
I miss my baby!!!!!!!!!!!!!!!!!!

We are still planning on getting the letters together for the fight of our children, I will post more as it happens.

Please pray for my friend Cheryl who's little Jordan is in his final stages of his life.
Also please pray for my friend Teresa who is also losing her precious Rebecca to this damned disease.
I also ask you pray for the Sweet family, who just recently lost their Precious "Sweet" Luke.
Pray for all the angel parents out their that are lost without their babies and have to get out of bed and face the day without them.. Last but not least, PRAY for the children who are fighting for their lives!!!!!

Love to all,
Justine

Wednesday, January 14, 2004 3:40 PM CST

OUR CHILDRENS FIGHT!!!!!!!!

Since it is election year coming up and Pediatric Cancer Awareness days shortly ahead of that, and with all the billions of dollars being spent *elsewhere*, I think we should inundate the White House with "snail mail" letters, maybe with Gold ribbons on the outside and have it well marked on the outside RE Pediatric Cancer. My husband was thinking he could write this letter and we would post it to a website so people can go in and download the letter, and basically ask the Prez what he is going to do about pediatric cancer to get our votes? In the corner of the letter there would be a space left open to put your childs picture. These letters would all be sent at the same time or somehow try to get the letters all to reach the White House within a 2-3 day time span.
I am thinking if they get THOUSANDS of these letters that all look the same on the outside (clearly marked re: Pediatric Cancer) its got to get somebody's attention there!!!!
My husband wants to come up with some kind of name for the project, in memory of Lance, but in the name of all of our children!!!!
Does this make sense, cause you all know Im a little shortchanged on the concentration these days, but I think it might work!!!!! Basically get some kind of commitment from the President BEFORE he gets our votes!
Please let me know what you all think.

Love to all,
Justine

On another note, this grieving sucks... seems to get worse by the day.. I pray for all of us angel parents to be able to take a deep breath, I still can not.. chest pains and all still going... good grief.. Atleast I know my baby is safe.

xoxox

Sunday, January 4, 2004 9:26 PM CST

Hi all,
Lance has been gone now for over 2 months
People (bereaved parents) have told me it gets harder as time goes on... You start to miss your baby more and more and that is what is happening to me right now.
I am having trouble just functioning, can not go to the grocery store or anywhere else in fear I will break down in public, its a very lonely place.
The phone calls have stopped (except for a few precious friends). I know people just dont know what to say or do.
But the emptiness is unbearable. I am trying to put one foot in front of the other and not doing a very good job of it, I cleaned a bathroom for the first time in 10 wks today. Yea! baby steps... ugh.
I miss Lance so very much.
His Dad seems to be doing a lot better then I am, he is moving on and moving out of his house and sounds pretty happy when I talk to him, although I am sure he has his moments of unbearable grief. I think it is different for the mothers who have had the child literally a part of their body for so long and it is that that embeds the child so deep in our souls.
Lance was my everything for 4 yrs while caring for him.. now he is gone. The pain seems to get more profound as the days pass and the chest pains suck! (Ive heard this is normal from other parents) Ive lost 20 lbs since his death (whoopeeeee I was fat anyway) haha.
I will keep this site going for all of those who want to check in... maybe leave a message, they do brighten my day.
It just feels like everyone is gone.. especially Lance.
I thank God for my husband, my step daughter Lauren, for Dan and Berit.
Love to all..

Saturday, December 13, 2003 1:57 PM CST

This season brings a lot of sadness to me. This was always my favorite time of year.. Lance's father used to call me Christmas Psycho because I went so far out with decorating, I mean EVERYWHERE you looked in our house was all xmas, i used to have to move everything out to prepare to put all the Christmas decorations up.
Last week was a good week and I was feeling strong and had a few good days in a row... I felt strong enough to believe I could decorate. I started taking the stuff out and BAMM! I have now been crying for the last 5 days.
I know Lance is now pain free, and I know he wants me to be happy, but sometimes his absense is so so very profound that I feel I can not breathe. I hate being without him, I just hate it... I was with him almost 24/7 for 4 yrs and it feels like my heart and soul have been ripped out..
I hope God doesnt play some sick joke on me by having me live till I am 90. Ok.. well now you know, Im definately depressed and really having a difficult time with the holiday season. It has been 7 weeks yesterday that he passed away and some days it feels so raw like it was yesterday. They say with this type of loss as time passes it gets worse for a couple of years. UGH. But more manageable. I will be glad when the holidays are over.

Love,
Justine

Tuesday, October 28, 2003 9:45 PM CST

Hi All,

What can I say, Life has been empty inside for me since Lance passed away, I do not know how the other who walked this path before me have done it.

Here is the essential information for now:

There will be a memorial service held at Our Lady of the Lake Catholic Church, 650 A Avenue, Lake Oswego, OR 97034
at 6.pm Wednesday

On Saturday

There will be a celebration "A Life Lived Large"
A Celebration of Lance Kowalski,
with a dove release and reception at the church following. This will begin on Saturday, Nov. 1, @ 2 p.m.

For those of you flying into town, following is the
Funeral Home info
Autumn Funeral Home
12939 SW Winterview Dr.
Tigard OR
(503) 443-4900

The funeral home asked you to just have the airline company call the.. which seemed strange to me.. BUT SEVERAL people have found it WAYYYYYYYYYYYYYYYYYY cheaper to do the flight arrangements thru Cheaptickets.com.. were talking like 100's of dollars CHEAPER... go figure.. Thanks Airlines!!! GRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRR

I will be adding more to this later... I have some quotes from Lance I would like to share, but I am beyond exhaustion and sick.

Love to you all, and I look so forward to seeing the ones that can make it.

Also, I wll be doing a balloon release, time and day to be determined

Friday, October 24th, 2003

I am sorry to report, after a long hard struggle with pain, Lance finally felt his peace in Gods arms at 5:27 a.m. on Thursday Morning. There was NOTHING easy on his passing, he had NO peace till the last few minutes of his life.
I do NOT understand HOW GOD could let anyone suffer till the last few minutes, ESPECIALLY A CHILD. The only wonderful thing I can say about his passing is that his Grandfather was clearly there for him (details later) and that he had his mom and dad holding his hands during his last labored breaths.. but he DID die with a smile on his face. I went to see him today at the funeral hom, aand that smile that Lance is so well known for, was still there.
I will post details tomorrow and funeral arrangements. I know that he will be having TWO services, one on Wednesday October 29th (his fathers birthday, mine is tomorrow) and we will ahve a celebration of life on Satruday at my church, Living Enrichment Center... Like I said.. details to follow tomorrow. This was the longest roughest road a person could travel.
I am so thankful he is "whole" again and happy and I am SURE there were angels in the room with us when he passed because of certain things he said. More tomorrow
Thank you all for your love and prayers.

Sadly,
Justine, Forever the proudest mother in the world to Lance

Thursday, October 23
., I guess I spoke too soon. Lance DID get up and walk around last night, but maybe too much? He had the worst night he has had in a very long time pain wise. I could NOT get it under control for a very very long time.. I turned his pump up to a number that to me was very scary, but I know to watch his breathing at that high a dose.. and it was fine. For any of you who have used a dilauded pump, I had it up to 35 mg an hour and his bolace (self administration button) was set at 25
Before all this started with the pain and then the lack of ability to walk, his pump would be set at 14!!!! Bolace at 4 or 5 during the day, then I would put it up to 18, bolace 8 at night.. so you can see he had quite the jump, and IT STILL DIDNT WORK. He had XANAX in him OXYCODONE and Ibuprofin, along with his nerve pain meds... nothing... nothing would help him. It was so pitiful, his cries and of course he was mumbling "please Jesus" over and over and over again. I basically with what little sleep I got slept with my finger on the button and would push everytime he moved. He didnt sleep much and at 5:30 a.m. he asked that I move him to the couch. Well that did the trick.. as soon as he sat down and put his feet up on the coffee table, he felt better.
Now he is in sleeping in that position.
He started crying when he saw our dog this morning and said over and over "im sorry Kelly, Im sorry Kelly..." and I asked why he was apologizing to Kelly and he said, "I thought I would be with her all her life, but I wont".
This G#*$mn F*#& Disease SUCKS!!!!!!!!!!!!!!!!!!!!!!! I am angry at the disease and last night I was VERY ANGRY AT GOD! I mean really, cmon, give this kid a FRICKEN BREAK already!!!!!!!!!!!!!!!!!!! It just KILLS me that these poor kids have to go thru all the ##@$&#@$(& treatment, have toxins poured into them and then STILL suffer at the end! What the hell is with that?????? GRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRR!!!!!!!!!!!!!!!!!!!
On top of all of this, I have the flu from hell and feel like roadkill, but unfortunately can not take care of myself right now, I am not complaining, Lance is NUMBER ONE, but it would be a lot easier if I werent sick.
One thing I wanted to share though that absolutely warmed my soul last night is when Lance was in his "comfortable" zone he looked at me and said "I love you so so much, I could not get thru this without you mom, and mom, I would not still be here if it were not for you" OMG... I was just stunned (:in a good way of course) I told him I love him more then life and I will do ANYTHING FOR HIM. I KNOW he knows how deeply I love him, I did not know that a love like this could exist, it is consuming me. I love him sooo soo very much, its like its hard to put into words, am I making sense? I am a little sleep deprived so I may be rambling.
I got to watch the sunrise over the lake this morning.. it was absolutely INCREDIBLE.. I am sitting here listening to the geese in the distance and the fall ducks have been chattering away this morning. The lake is like glass and the red, orange and yellow trees are reflecting on it.. it is amazing.
Well that is all for now...
Please check back later today.. I will be updating EVERYTHING that goes on.
I am calling hospice pretty soon now, hopefully theyhave some kind of back up for when the pump does not do the trick, or maybe they will tell me I can turn it up even higher, which of course would knock Lance out. The call it "resting him" I am a little afraid of him not waking up though, but then if he didnt wake up... I would feel relieved for him, that HE would be finally free of the G*dam**D disease!
I just dont know how to live without him, thankfully, I have A LOT TO DO with our new house and I have several projects in mind, including making a scrapbook of his journal.
Anyway, its time to go.
Love to all,
Justine

Yawwwwnnnnn

Tuesday, October 21, 2003
5 p.m. Tuesday Evening
HE'S UP AND RUNNING!!!!! well, not quite running, but Lance is up and WALKING around all by himself now!!!!!!
YIPEEEEEEEEEEEEEEEEEEEEEEEEEEEEE!!!!
He came home from his father's this morning and walked thru the door! But then he was pretty much "down" all day.
A little while ago, he sat up and then stood up and walked!!! Now he is getting around quite nicely with the help of his cane :) Thank you God!!
Ok, can we just have a few more twists in this roller coaster ride from hell?
I can not believe how quickly things can change, and how close to the edge Lance gets, but doesnt fall over! He is my hero :) My little energizer bunny! keeps going and going :)
This is great news, but I am staying in THIS moment and THIS day, I know things can and probably will change. This awful disease really teaches you to treasure each and every good moment there is!!!!!!!!!!!!!!!!!
THANK YOU TO EVERYONE FOR ALL YOUR SUPPORT AND LOVING LETTERS! AND THANK YOU TO MY NB ANGEL AND WARRIOR MOMS (and dads!) FOR HOLDING ME UP!!!! I LOVE YOU ALL! and I could not have gotten thru this bump in the road without you.. and especially thank you to SHANNON SNOW for finding ME and introducing me to the NB listserv!!!!!
Until next time!!!... stay tuned!
Love,
Justine

Monday October 20th,3:50 p.m.
When I got Lance up this morning he did not have any pain. He still can not walk by himself but he did feel maybe a wee bit stronger in that leg, didnt seem like he was hanging on so tight, but I know there is no way he could walk by himself. He had some pain this morning that had to be brought under control, but he has been comfortable most the day now and is sitting here next to me snoring away. He will be at his dad's house tonight, I hate for him to be away from me now, but his Dad needs him just as much as I do, and he needs his dad too. So for now everything is quiet. Hospice was here and just left a while ago.. they are thinking it may be a compressed nerve in his spine (good grief).
Please pray for the Armenio family, they buryed their little Justin today and they have been on my mind most the day, I am praying it all went smoothly for them as Justin's mom was not doing too well this morning, of course.
Please check back, and if you havent already, please sign the guestbook
Love,
Justine

8:15 a.m.
Lance had a peaceful night and slept well. He only woke up a few times looking for the remote control (he sleeps with the tv on, ive gotten used to the sound, as a mater of fact the sound of the themes from Three's company, Full house, Cosby, and the rest of them on Nick at night are quite comforting to me). He is still sleeping and has no pain.
I am sitting on my deck overlooking the most gorgeous scenery of the lake and the color of the trees changing, it is like being in a painting. It seems like in this very moment there can be nothing that is possibly wrong in this world, there is a breeze and its about 70, just breathtaking. But there are so many heartbreaking things now. My dear friend Susan is burying her beautiful boy Justin today, he died from this damned disease. Please take a moment and look at his website www.caringbridge.org/ny/justinarmenio
My good friends Laura and Katy are struggling with the recent loss of their beautiful babies. My other wonderful friends are mourning the loss of their babies, recent or distant, it never goes away for them. God, how could this happen? I would NOT be able to get thru this feeling of having my heart and soul ripped out of me WITHOUT THESE DEAR WOMEN. They have become my saviors. Julia, I love you! and to the rest of you, you know who you are :) I thank you, and I love you all.
I do not know what this time is holding for Lance. We got him to bed last night and it was like he was trying to balance on two broken toothpicks, it is awful. He is crying a lot, not just crying but really WEEPING. He is so so so frightened. He does not know what I know what I know, that so many who have gone before him, have lost the use of their legs shortly before passing. This kills me. Do I tell him? I dont know, I want to be honest.. but not brutal! He is still worrying about how he is going to go to college! Thats my boy! He is the most precious, amazing, loving, caring, compassionate, kind, human being I have ever known, and I feel so blessed that he is my son.
I pray that he doesnt suffer, I have prayed that God take him before he realizes he may not walk again, and then the next minute I beg God not to take him from me. But this isnt about me, it is about him and only him. I do not want him to suffer way more then I want him to be here with me. He has suffered to much already, but to lose the ability to walk? IT IS TOOOO MUCH!!!!!!!!!!!!!!!!!!!!!this is just tooooo much, its more then he can take.
He told me yesterday, if he cant walk again, he does not want to live, I can not blame him. God have mercy.... please?

Posted at 10:32 p.m pacific time
Lance is in bed sleeping comfortably.
It wasnt an easy task getting him there.
He did a lot of crying tonight and asked a lot of difficult questions that I just couldnt answer, he is so so very afraid he will not walk again. I feel like my heart and soul are being ripped out of me and stomped on and then shredded seeing him like this.. I have never seen him so frightened..
I pray he sleeps well tonight
Goodnight,
More tomorrow...

Posted at 1:20 pt

Hi again,
Hospice came and determined he has some bad nerve problems right now. She ordered some meds for nerve pain, which I did not even know existed, (this lady was very experienced) but Lance asked her if he would walk on that leg again, her answer was "I dont know, I can not answer that right now" It BROKE HIM APART!!!!!!!!!!!!!!!!!! I hate this #$#* DISEASE!!!!! I feel so helpless, and of course my heart is broken into 100 million pieces as I watch my baby suffer!!!
PLEASE KEEP CHECKING THIS PAGE, I WILL BE WRITING EVERYTHING THAT GOES ON WITH HIM PROBABLY SEVERAL TIMES A DAY.

Hi all,(posted this morning)
Since I updated just last night, Lance really took a turn for the worse. He had some horrific knee pain that I could not get under control for a very long time, he was pretty drugged up by the time he fell asleep. He did wake up once to tell me his foot was numb, I dismissed it and said "dont worry, its just asleep". Well this morning he woke up and had to go to the bathroom really bad, but said his foot was still numb, upon which he started to cry. I went to pinch his foot to see if there was feeling at all (of course at this point I had "paralysis" running thru my head. He could feel everything I did to his foot. So, I tried to get him up to the bathroom and he went to stand on his leg and it gave out and he crumpled to the floor!!!!! I got him up onto the bed and he started crying and asking me if he was going to lose his legs! It was so so damned HEARTBREAKING!!!!!! I found a "makeshift urinal" so we could atleast get him comfortable in that area. He is finally peaceful again and laying in bed for the moment, he wants me to get him up at 10:30, wish me luck, PLEASE SAY SOME EXTRA PRAYERS FOR HIM TODAY!!! I pray that he does not become paralyzed, I know some kids who have become paralyzed from the waist down due to spinal involvement, which Lance has a lot of. Ugh, this disease is a MONSTER!! it makes me soooo angry to see him and all the other children I know suffer!!!!!!! WHY GOD? I JUST DONT GET IT!!!!!!!!!!!!!

SATURDAY, OCTOBER 18TH, 2003
Hi all,
I know it has been a ridiculously LONG time since I have updated this site. Although about a week ago, I wrote an update thinking I would just write a quickie, and well it ended up to be a 15 minute typing event and I type like 85 wpm!!!!
I went to post it on the site, after typing it directly to "Caring Bridge" thinking the whole time "I should be doing this on Word, just in case" well, anyway, went to post and as soon as I hit the button "Post Update" my connection was lost, and so was ALLLL MY TYPING!!!!!!!!!!!!!!!! Grrrrrrrrrrrrrrrrrrr!
I was sooooooooooo frustrated. Anyway, needless to say, I will not do THAT again!~
This last summer was very very difficult. As you all know we went thru a "forced" move but we ended up in a much better place, so I think the forced move and the house we didnt get was actually supposed to be, because we found a house that feels like our true home and we do not have to go anywhere again, EVER!
Since my last update, Lance went thru a period where his left leg swelled up twice the size of his right. Of course we were scared to death there was some kind of blockage, etc. But it turned out to be just good ole "edema". His leg went back down and never swelled again! Thank God. I had heard from several neuroblastoma "angel" parents that that happened to their child right before they died. It was the first time Lance left me on a Friday to go see his dad and I was not sure if I would ever see him again alive. Needless to say, I was a complete wreck! But my baby came home on Monday, with a little bit of swelling, but it had gone way down.
Thursday, September 26th was a HUGE day for Lance and I as it was the season premier of "our" show "Friends". Lance and I both did not think he would be alive for this event. Last year we had gone out, just the two of us, and had steak and crab as a celebration, thats how big a deal this is to us. So this year we were very thankful that Lance was here so we could be together to watch it. We broke out the Martinelli's and had a toast!! Little did Lance know, but I video taped the whole thing, I had the camera on us the whole time :)
Lance has had relatively few problems these last couple of months since the leg swelling. His pain has been under control (till tonight, but Ill tell you more about that later) and although it is kind of hard for him to get around, that hasnt stopped him, he is such a trooper
We did find out however, that he needs to have a tooth pulled, and lately his lower gums have been going haywire, we think it is nerves, but get THIS, HE and I need to get the exact same tooth pulled!!! #14! I knew Lance and I were "hardwired" but this is pretty weird! LOL! Regarding the pain in his lower gums, that has been pretty difficult to deal with the last few days, it has really really been hurting him and what do you do for nerve pain? I suggested Xanax to his hospice nurse, we started him on it yesterday and it has been working like a charm! Now, for the NEW pain, this morning after I showered him he complained his knee hurt, but it seemed to go away, so off we went to the pumpkin patch! He made it thru the Hay Maze but after that he was just done... he was so tired and weak. We tried to go out to eat at Applebee's and he was falling over asleep at the table, then his knee REALLY started hurting so we needed to get our food to go and get him home.
It took me probably a good hour before I could get him comfortable. It just absolutely breaks my heart to see him cry and to sit here and feel so damned helpless!!!! After a LOT of meds and heat and ice and TLC, he finally calmed down and fell asleep, and that is where he is, right next to me, mouth wide open, sleeeeeping away. I pray that this is not the beginning of another horrific pain episode. Please, all of you, pray that he gets comfortable again. I think he just over did it today, before the pumpkin patch, his step dad Eric took him out on the boat, which was his first boatride all summer, and they went fishing. There are quite a few steps down to our dock on the lake and he went down and back up, but I am sure the exertion wasnt good for the knee.
It is a very difficult time for me right now, as I do not know what is going on with Lance. Most NB kids go down and stay down, Lance always pops back up, to everyone's amazement.
I cant tell you how many times we have all thought "this is it"
Last night we got another addition to our "farm". A little baby kitten that the kids named "Rascal". He is SOOOO cute and a little lover boy with a purr motor that doesnt stop! I think that this will be good for both kids, even though our other animals may not feel that way, including 1 dog, 2 adult female cats, a male guinea pig, and female ferret and a frog named Trunks! Yea.. we need ANOTHER ANIMAL! lol.. well this mom has already fallen in love with this special little kitty!

In my Neuroblastoma support group, we have lost 10 kids and one adult to this NASTY disease since the end of August.
I ask for you all to pray for these "angel" parents. I have seen so many parents do great the first week, when they are concentrating on the fact that their baby is finally PAIN FREE and is whole again and and their beautiful souls are now soaring, but as the shock wears off, then they start feeling the full impact of the loss and the absense of their beautiful children! If you would like to see some of our kids, another mom Kelly, graciously put together a website with all our kids on their, Lance hasnt gotten on yet because she has so many to do and is leaving her home for another treatment for her boy. Pray that this is the one that does the trick. The website name is www.beeboinfo.com Click "angels and warriors" unless she changed it, but will be entitled something close to that.

Anyway, my lids are getting heavy, Lance is snoring next to me too, ahhhhhhhhh music to my ears :) Such a comforting sound, to hear him sleeping and snoring.
I took some cute pictures of him on the boat and at the pumpkin patch that I will TRY to post tonight, if not, tomorrow night :)
Thank you for caring and checking in on us and again sorry for taking so long, I have had many requests but just not the time :(
Take care all.
Love,
Justine

Thursday, September 4, 2003 3:06 PM CDT

Hello everyone,
Hope everyone has had a nice summer, I can not believe school is starting already, this summer has been such a blur.. it seems like school just got out.
As some of you know, we moved AGAIN into a house on the main lake here in Lake Oswego. It¡¦s a great great house with a GORGEOUS VIEW OF the lake. It needs quite a bit of work, but there might be a time where I will need to keep busy, I think God put us here for a reason.
Lance has been up and down as usual. The pain in his legs has finally been brought under control with the pain pump he is now attached to 24/7.
Last week we had quite a scare. Lance¡¦s left leg swelled to just about twice the size of his right leg. It had started in his foot and worked upward.. By Friday, you could not tell he had bones in his leg! Our regular hospice nurse was on vacation and the person who was covering for him was unavailable and I got a phone call from someone at hospice who really knew NOTHING about Lance. He basically said ¡§if your worried, call your oncologist¡¨ So I DID. I talked to the nurse and the doctor was there, but he was on the hospital floor, she said she would page him, I never heard anything. I turned to the parents who have been thru this Neuroblastoma nightmare and got a lot of responses from ¡§Angel¡¨ parents who said that their child swelled like that anywhere from 2 days to 3 wks before they passed. So AGAIN I thought ¡§this is it¡¨. Lance left with his dad on Friday evening and I was not sure if I would see him alive again. The weekend was absolutely HEARTWRENCHING. On top of that, a little girl named Madison, who is very near and dear to my heart, passed away from Neuroblastoma on Saturday evening at 11:14 in her daddy¡¦s arms. So needless to say.. there were a LOT of tears this weekend in this house. Please say a prayer for the Poncin family.
The weekend continued on and there were really no changes with Lance, but he did come HOME on Monday night!!!! Yipeeeeeeeeeeeeeee ƒº I have never been so happy to see anyone in my entire life!!! Thank you God! His swelling had gone down about 75n his leg although his ankle and foot were still quite swollen, but he was in good spirits and feeling and LOOKING good! The swelling has gradually gone down and yesterday a physical therapist came out to work with him and show us some stretching exercises for his legs since his calves are SO tight from lying down so much, that his muscles have shrunk.
Last night he went to his dad¡¦s house and this morning I am elated to report, you CAN see the bones in his foot again, the swelling is almost GONE. So we now know that he had Edema which was probably caused when he finally got up and around and sat at his computer for 2 hours at a time playing, while the fluids ran down into his feet and leg.
I am not sure what God¡¦s plan is, but it seems like with other NB children, when they go ¡§down¡¨ they stay there. Lance seems to keep bouncing back again and again, as I am so thankful, it is still hellish to go thru, as I have said before, it is the roller coaster ride from HELL.
Anyway, my time is up, I have decided instead of waiting so long in between updates and making them so long, I will put short little updates every few days in. Sometimes it is just hard to get the time to sit and do it.
I will be posting some NEW pictures hopefully sometime today or tomorrow morning.. please check back, and if you have time, please sign his guestbook, as we do like to see who has come to visit ƒº

Remember, count your blessing every single day, do not take anyone that you love for granted EVER, not even for a moment.
A good friend of mine asked me a couple of weeks ago what I have learned from all of this.. at the time I was caught of guard and just kind of sat there like a ding dong going ¡§uhhhhh¡¨.
I can now answer that with absolute certainty. The main thing that I have learned from this is that I love Lance with every cell in my body, I did not realize that I was capable of loving someone so deeply and unconditionally. When Lance was little, I would tell people that I was just not the ¡§maternal type¡¨. Well the mama bear came out in me when my baby got sick. This whole experience has showed me what an incredible, unique, wonderful, sweet child that I have, I am so very blessed to be Lance¡¦s mother. Thank you GOD!

Love and peace to all,
Justine

Sunday, July 6, 2003 6:55 PM CDT

Hi all,
This is going to be short. Lance is doing very poorly these days, he was put on a pain pump last week and his pain STILL reeled out of control. Things are very very sad here, and I feel everyday that he is slipping closer and closer to heaven.
Please pray for him to have peace and comfort and that God gives him mercy now, the poor guy is deteriorating before my eyes.

Love,
Justine

Monday, June 16, 2003 5:58 PM CDT

I know its been a long time since I have updated and I am sorry for that... it seems as though the days now just kind of melt into eachother, same thing everyday.. wake up, wait for Lance to wake up (anxiously) to see what kind of condition he is in, then we move into his routine of he has to have his "drink" at 10 a.m. then his breakfast served to him at 10:20.. everything coincides with the shows he watches in the morning.
Recently Lance has started accepting that he will not be here much longer and has really had a hard time worrying if he will indeed be in heaven, he is afraid of being in some "white" place all alone.. it is absolutely HEARTBREAKING. I have reminded him many times that he has earned his angel wings a long time ago, and that he has a LOT of people waiting anxiously to greet him. It usually helps after we talk. Today I had the minister of our church Mary Morrissey come to the house to be with him, she was able to ease some of his fears and he felt a lot better.
Then after that she and I discussed a memorial service to be held at LEC when the time comes. It was a huge relief to find out that ALL I have to do is provide pictures and there is someone there to make a video to music with all his pictures, and they have a soloist, etc, she told me not to worry about a thing.
Lance is having pain now pretty much all the time, but thankfully it is controlled by meds. He is not walking well though and really doesnt feel up to doing much these days. He is still dozing off and on (while at my house anyway) and requires a heating pad all the time.
He is so brave though about death, he is not scared to die at all. I am sure at this point he is probably welcoming it. I know that my prayers have changed from "god please save him" to "God, please take him, I dont want him to suffer anymore".

We are not having to move at this time THANK GOD! I couldnt even begin to imagine what hell that would have been on us.\
Our whole family is really suffering horribly now.. I cry most the time when I am out of Lance's site, and feel sick to my stomach most the time, I do manage to eat at night though.
My mom has been up a few times a week to help me out, and I am grateful for that.
So in a nutshell, in my gut and heart, I really do not believe at this point that Lance has too much longer on this earth, I feel him slipping from me more and more each day and it is killing all of us.
I do not know how people get thru loosing a child, I never knew that a human being could hurt so incredibly badly. At this point for me I cant seem to find comfort or joy in anything and prayer brings no peace at all, I hate life right now, I feel it is so cruel. I swear I hope I do not live to be 80!!!!
Anyway, sorry for the "upbeat" (I am being VERY sarcastic) update.. but it is just too damn hard to even try to be upbeat right now.
Please pray for my baby, pray that God takes him peacefully and that he does not deteriorate any more then he has to.
As far as his friends out there (playmates) I suggest you play with him as much as you can.. he doesnt have many more "tomorrows".
Please pray for all of us watching him go thru this also.
Thank you,
Justine

PLEASE SIGN HIS GUESTBOOK IF YOU HAVE THE TIME!
THANKS!

Sunday, April 27, 2003 6:13 PM CDT

Hi there,
I just wanted to give a quick update on Lance.
Nothing has really changed recently except his appetite has gotten a little lighter. He is still somewhat tired most the time but not dozing off constantly like he was there for a while. He has pain, but it has been manageable with all the medications he is on. So really not much change in the last month or so. He does go thru days where he hurts more then others and days where he is pretty tired, but all in all, he seems to be doing ok.
He did say to me several nights ago, out of the blue, "I want to start taking my supplements again, I know it wont make the cancer go away, but I know I will feel better on them". So he is getting a pretty good dose each day for now. He has said in the past that he wanted to start them again, only to refuse them when I would bring them or just let them sit there.
What a roller coaster, there have been so many times in the last few months I have thought "this is it, he doesnt have much longer" but he always seems to bounce back.
I have no clue what the monster inside is doing at this point, he hasnt been scanned in several months. I am not sure I want to know the extent at this point.
Hospice has been coming out every week to check on him and like I said above, not much change, lungs still clear, etc.
Please take a minute to check the new photos and sign the guest book :)
Thanks to all of you for your continued, love, prayers and support!!!!
Love,
Justine

Sunday, March 16, 2003 7:19 PM CST

Hello everyone,
Well what can I say except for Lance's birthday was PERFECT.
He hung around the house playing with Chris, Amber and Lauren (Chris is Eric's nephew who was visiting from Indiana, and Amber his girlfriend) and then at 2 p.m. his foosball table that Eric bought him was delivered. That was quite the hit!! They all played on that for quite some time and before we knew it it was time to get ready for the big night. At 5 p.m. a white stretch limo arrived to pick us all up to take us to Jake's Grille for dinner. The limo company donated the limo to us and it was QUITE the limo!!
We had fun on the way up watching Lance sip on champagne. We got to dinner and they had printed "Happy Birthday Lance" at the top of all the menus. We ordered appetizers, steak, lobster, prime rib, etc, went all out!!
When we got the bill we were informed that $300 of it was already taken care of.. the restaurant had donated the meal!!!!! The food was scrumptious! But having everything donated really made it nice!
We got home and we had cake and Lance opened all his gifts and cards. Thank you to EVERYONE who sent cards and gifts, he was in 7th heaven!! I so much appreciate everyone taking the time to send him something, I can not tell you how much it meant, I am not sure if it meant more to me or to him!!! lol
We had birthday cake and the kids (and adults) had balloon wars and played foosball. We stayed up till Lance's official birthday at 11:09. I do not think the night could have turned out any better. I know that was the first time that I was ACTUALLY HAPPY in a very long time, I felt such joy watching Lance!
Friday, Chris and Amber had to leave us to go back to school in Indiana, that was quite sad and we will miss them.
Ok, now for the surprise.
There is a family called the Selby's that used to live up the street from us. Lance grew up with the Selby kids and also Christina and Natasha Mautz. All these kids were sooooo close. Elaine Selby (the mom) was like a second mom to Lance, this woman is the sweetest woman in the world!
She has been my rock in many occasions and is truly a peaceful wonderful human being.
Well, they had to move away about a year and a half ago to Kansas and it was devastating to everyone. I havent seen them since and Lance hasnt seen them in a year. Lance's ONLY wish has been to go see them. Well since travel is really not an option right now, we flew the Selby's out here to see Lance~!~~ Lance had his big birthday party at his dad's with his friends on Friday night and then Saturday morning Dan brought Lance over and I had the Selby's hiding behind the couch!~ When he walked in they all jumped out and yelled "SURPRISE"! Ohhh my... I think Lance went into shock! He was TOTALLY and completely surprised, had NO clue what the big surprise that was coming to him was. Then Susan brought Christina and Natasha over, they did not know that the Selby's were coming either. They saw them and started crying. It was an emotional HAPPY reunion!!!! Lance was SOOOO happy!
Dan had all the kids, including Christina and Natasha spend the night at his house with Lance, Elaine spent the night with me. Today Lance is at Dan's house with the Selby's and I am sure enjoying every minute. He was having some pain yesterday and I was SOOOO worried this morning that he might wake up in bad shape.. but not my Lance!!! I talked to him this morning and you could hear the happiness in his voice.
They are all going to stay at Dan's house, Dan is out of town, and they will come to my house on Tuesday.
It is SO quiet around here now :(
I will keep y'all posted on how his visit is going..
Thank you for checking in and again, thank you all for the cards and gifts and donations into Lance's fund!

Much love to all,
Justine

Sunday, March 16, 2003 7:19 PM CST

Saturday, March 8, 2003 4:45 PM CST

Hi all,
I am sorry that I have not updated in so long, sometimes it is just hard to find the time to sit down and do it.
This will be short.
As you all know from my last update, Lance began hospice care. They have been wonderful so far and it is just nice knowing that they are there to help and that if there is a need, we do not have to go to the hospital.
Lance is doing ok right now, he has his good days and then he has his really bad days. Last Monday he came home in incredible pain and we had to call hospice. I ended up getting the pain under control with his medications. I hate days like that, we always tend to think "ok, its not going to get better", BUT the very next day Lance woke up and felt fine and has felt fine ever since. He has had to take some medications but so far he has not had any pain go out of control since last Monday.
As I write this, he is in my bedroom doing a Rife treatment.
Our friend Bill Wodrich, generously offered to let us use his Rife machine since Lance has not been able to travel back to Washington. We have started up the nutrition again (slowly) and right now I guess I am just praying for a miracle.
Lance's "GOLDEN" 13th birthday is next Thursday, March 13th. If you would like to send him a card (which I am sure would make his day) our address is
Lance Kowalski
17211 Blue Heron Road
Lake Oswego, OR 97034

We have some "big" surprises planned for Lance, but unfortunately I can not disclose them right now since he may read this!!! lol :)

I want to thank everyone who made Susan Mautz's fundraising party a HUGE success!!!!!! And also thank everyone who has sent in donations for Lance..THANK YOU THANK YOU THANK YOU!!!!!!!!!!!!!!!!!! I can not tell you all how much it means to our family. Since we can not travel to Washington, we are putting the money towards nutrition treatment and also a BIG SURPRISE for Lance. Which I will tell you all about "after the fact" :)
I also want to say a big thank you to Greg and Dona Pace of Gooddeeds for their taking part in Lance's fundraiser so that people can make tax deductible gifts. I know they have put a lot of time and effort in to helping us out.
Moonstruck Chocolate also sold candy at Susan's party and 100% of the proceeds went to Lance!! Thank you to the Bany family!!!!!! Also, thank you for the best chocolate I have ever had, it is also Lances FAVORITE!
There are so many thank you's that I want to make right now but it would take me all day to do so :) There will be some cards in the mail soon :) THANK YOU ALL!!!!!
For people who worry when I do NOT update, please know that if something happens, I will update immediately, if there are no updates, it just means that nothing has changed really. I will try to keep on top of this.
Thank you all for your continued love, prayers and support thru this very difficult time.
Love,
Justine

Sunday, February 9, 2003 2:27 PM CST

PLEASE SEE NOTE AT BOTTOM

Hi
This week has been among one of the more difficult one's I can remember.
Lance has been having radiation to his leg and groin area where he had tumor progression but we have still had a hard time managing pain. He is on a LOT of medications now to keep him comfortable. He now has new areas popping up. His back right now has been very painful and the other day he could barely move. I have seen this happen with other Neuroblastoma children toward the end of their lives where they start having new pain in new places consistantly. I asked my neuroblastoma support group, particularly the "angel" parents if this is what happened with their children towards the end, they confirmed that, yes it was.
I talked to Lance's doctor on Thursday and he told me that he believed it was "the beginning of the end" for Lance.
Dan and I went and met with Dr. Thomas on Friday and spent quite a bit of time talking about hospice and meeting with the pain management team. He also told us that he believes that because Lance does not gain weight, even during the times that he eats constantly, that maybe the tumors are now metabolizing his food!
Dan and I were both pretty convinced that maybe Lance was hanging on to protect us.
When I got home on Friday after our meeting with the doctor, Lance looked at me with big tears and said "am I going to die?" God, it just ripped my heart out. I told him what Dr. Thomas had told us and also talked to him about protecting his dad and I. Well, guess what he said?
"I do not feel I am dying right now, and I am not protecting you, I do not feel it is my time to go" He then told me that he wants to start taking all the nutrition again and keep the plans to go up to Washington, even though it may not help him.. but he said very clearly, that NOW is NOT his time. He also promised that if the time comes, he will let us know and not try to protect our feelings. What an amazing human being he is. I am so incredibly proud of my son and so honored to be his mother. He is not ready to throw in the towel. When we discussed the nutrients, I said to him "you realize I am going to be in your face with handfuls of pills again" and he said "GO FOR IT!" So on we go.. We are going to start a heavy duty regime of nutrition like we did last year at this time, when they told us he would not be around long.
When he started the nutrition, he did nothing but go UPHILL.
I am not sure if this will happen this time, but we do know it definately wont hurt!
As soon as he is physically able to travel, we will head back up to Washington.
What a roller coaster.. one day I think we are going to give up and then the next everything changes.
Last night he went to his friends Natasha and Christina's house and spent the night. Lance and these two girls were babies with binkys together, they have remained friends all these years. He took his video camera and he said they had a blast making movies. I talked to him this morning and he sounded happy. He is off with his dad on a boat ride and said that his back was feeling better today. He is amazing.
This week seems it has taken a toll on me physically, I feel absolutely ill from head to toe. I am trying to stay in "today" and not let my mind go to "what if", it is a very difficult task.
I woke up this morning thinking about what a robust boy Lance used to be, he was always bigger then the other kids. He now looks so frail.. I felt like somebody came and just slammed me with a 2x4, there are somedays I hate just waking up, today was one of them. I am tapping into my reserves to stay strong for Lance, but it seems that is getting harder to do, it is a feeling of suffocating slowly.
I guess we just have to "keep on keepin on"..
We will be in contact with hospice next week, I will keep everyone posted.
Thank you all for your continued prayers and support.
Justine

PEOPLE HAVE BEEN ASKING WHERE TO SEND DONATIONS THRU GOODDEEDS ORGANIZATION
AND HAVE NOT BEEN ABLE TO FIND THE ADDRESS, SINCE I POSTED IT A FEW JOURNAL ENTRIES AGO

Here is the correct address:
GOODDEEDS, ORG
20801 Wisteria Road
West Linn, OR 97068

If you are making a donation in Lance's behalf please make the check to
Gooddeeds, Org and put in the memo area of the check "For Lance" Just make sure that there is a reference regarding Lance, otherwise they will not know if it is for Gooddeeds or for Lance.
Gooddeeds has generously offered to take care of Lance's donations so they can be "tax deductible"
Thank you!!!!!!!!!!!!!!!!!!!!!

Thursday, January 23, 2003 at 08:40 PM (CST)

Hi
Last time I updated this page, Lance was feeling great, swimming, running and jumping. The very next day Lance said to me in the evening ¡§my leg kinda hurts¡¨. The following morning his pain had escalated so much I could barely get him out of bed to go to the clinic, after giving him a heavy dose of pain meds we finally made it. That day I kept him on schedule with pain meds and even though he was having a hard time walking and he was hurting we still ventured out to do some sight seeing on Whidbey Island and over Deception Pass with a beautiful view of the Cascades and the Olympic Mountains.
That night we went back to the hotel and rested and at 3 a.m. he woke up crying because he had to pee and could not move his leg the pain was so intense. It was so scary to be so far away from home and in a hotel while this was going on. I gave him a big dose of pain meds and about 15 minutes later he was able to get up, he did not want me to carry him because he feared I may hurt him. Thankfully after he went to the bathroom he was able to go back to sleep pretty quickly. We went for his last treatment on Thursday morning and got on the road to come home. Over the weekend Dan had a difficult time keeping the pain under control in the middle of the night, I guess one night he got to the point of almost calling an ambulance. Now we set our alarm clocks and make sure he gets his dose every 4 hrs, that seems to keep him comfortable to get thru the night.
We went to radiation oncology today and the doctor decided to do a bone scan so they can get any ¡§potential¡¨ areas that might cause pain in the near future. That is a relief. During radiation I will be giving him heavy doses of nutrients to detox the radiation effects on the body. As soon as he is done with radiation we are out of here and headed back up to Washington hopefully for 3 week of STRAIGHT therapy.
We met a lot of nice people at the clinic and some of them were success stories.
There was a family up there, mother, father and 39 yr old son. The mother had been treated at the clinic a year and a half ago for late stage ovarian cancer. She is doing GREAT now. Her son is being treated at the clinic now for relapsed Hodgins Lymphoma, after 17 yrs of being in remission. When he got to the clinic he was so sick, he was not eating, throwing up all the time and could not breathe properly due to asthma issues.
When we met them, he was in his second week of treatment and he was feeling great and eating like a horse and BREATHING! He looked at me one day and said ¡§I have NO clue how this therapy works, all I know is that it is working¡¨. His mother looked RADIANT! This therapy doesn¡¦t work for everybody but I do have hopes that it will help Lance, and the thing is, is that I personally know of THREE people now that have no evidence of cancer! And that is just a SMALL percentage of the people they have treated. I will be glad to get back up there, but in the meantime I am happy we are home and close to his doctor while he is going thru all this pain.
I will update next week on how radiation is going.
I have posted some new pictures ƒº Check them out and sign the guestbook, please, if you have the chance.
Love to all,
Justine
P.S. Friday, January 24th is the 3 year anniversary of Lance¡¦s diagnosis ƒ¼
We sure didn¡¦t know today, three years ago, what was about to hit us.

Tuesday, January 14, 2003 at 11:35 PM (CST)

Hi Everybody,
I have had MANY requests for an update and I am sorry that I have not had the chance to sit down and do so.. seems like the holiday rush took over and then the focus turned to getting Lance to the alternative clinic.
We arrived Sunday, January 12th.
Lance has had two Rife treatments so far which last about 15 min each. It is completely painless and non toxic.
Before we came here I knew two people personally that have had their cancers CURED thru this treatment, since we have been up here I have met one more who has been in remission from ovarian cancer for 1-1/2 yrs. The clinic is very comforting and the people are very warm and caring. If you want more information on what the Rife treatment is, do a google search and type in "Royal Rife" or just "Rife". There is a whole slew of reading material.. I do not quite understand how it works, but it does seem to work for a LOT of people.
If I had not personally talked with these people I would probably be sceptical as I am sure many people who hear that we are doing this are.. but at this point, Lance does not have very many options left.
Right now he is feeling great.. no pain and moving around ( I have even seen him run the last few days). His attitude is good and open and he is believing in what he is doing.
He saw what all the nutrition and alternative meds I gave him over the summer did for him and the positive results he benefited from.
Our typical day up here consists of his treatment in the morning and then we have been heading to a movie and just running around. Then we usually come home and take a nice long swim and jacuzzi before dinner. Then we get into our room and settle in and have dinner and cuddle up and watch our favorite tv shows including "our" special show friends.
Tomorrow I have set Lance's treatment for earlier (10 a.m) and we are off for a day of exploring Whidbey Island and the surrounding areas. We are in a breathtaking area. We could not ask for a more beautiful place to do this healing treatment.
So we are doing well, Lance is eating like a horse and seems to be improving with his appetite and overall physical being. We will have an early morning treatment on Thursday morning and get back on the road and head home for the weekend and then turn around and come back on Sunday.
The treatments run Mon-Thursday and the drive is about 4 hours each way between here and Portland, and it is an easy straight thru drive. Thursday morning we will head down to Seattle and see the Space Needle and hopefully during the next few days we will get to meet Austin and Helen, Austin is a Neuroblastoma patient.
Many people have been inquiring with Lance's dad about our fundraiser for Lance.. we have been trying to raise funds for treatment since none of this is covered by insurance.
We had started this fundraiser earlier in the year and raised about 1/5 of our goal. That money went for Lance's alternative medicines and nutritional supplements, so when we started focusing on this trip we were basically back to square one. My husband Eric sent out a letter to a bunch of corporate people who have yet not come thru. Our good friend Nick from Scottland who is working with Eric has sponsored our first week here. This is not something I am good at doing, asking for help, but if you or someone you know can help for a good cause (saving Lance) I can not tell you how much we appreciate it. Meanwhile, THANK YOU SO VERY MUCH TO THE PEOPLE who have already helped. I understand financial times are so difficult for everybody right now, and if you can not, we completely understand, but if you can pass this info along to people, it will be appreciated more then I can even express.
The information for the fund is as follows:

Bank of the West
c/o The LANCE KOWALSKI DONOR FUND
5005 SW Meadows Road
Lake Oswego, OR 97035

If you need to speak to someone there, Kirk, Moana, and Valerie know us VERY WELL :)

Meanwhile, please pray that this treatment works for my baby boy.
I have posted new pictures and please sign the guestbook if you have time.
We are doing WELL right now, thank you all for your continued support, love and prayers, we can feel it :)

Love to all,
Justine

Saturday, December 14, 2002 at 04:39 PM (CST)

Hi all,
I wanted to fill you in on what is going on.
The last 9 days or so Lance's pain has increased to unmanageable at some times, he has really been suffering horribly. He started out with back pain, then neck and arm and groin pain, now he is having pain in his left tibia (where the new disease spots are) We had to buy him a cane the other day because he can barely walk. Yesterday when I took him to the hospital, they had to bring a wheel chair to my car to get him upstairs.
We met with Dr. Thomas yesterday and his opinion is that the Gleevec is obviously not working. He gave Lance Oxycontin which is a longer lasting pain medication and then he takes Oxycodone on top of that every 4 hours.
Last night I was getting scared because even with all the drugs in him I still could not get him comfortable, I finally gave him 1/2 a xanax and that seemed to do the trick. He fell asleep and slept pretty soundly.
This morning I went up at 10 and he was still knocked out.
When he woke up though he was crying in agony. So out came all the drugs and we finally got him comfortable again.
This is an absolute nightmare and so incredibly heartbreaking to see him in such pain, I feel so helpless.
He may have some small spot radiation next week just on his lower leg so he can atleast walk.
I have scheduled him to go to the alternative clinic in Washington State, we are leaving on January 5th and will probably be there 2-3 wks. I know he will be in good hands there and although I have NO expectations of a cure, I do think the treatment will help him though.
I have all of the christmas lights on upstairs and the kids are going to play game cube soon, it is very cozy and it is stormy outside today.
I will be keeping this journal posted every few days and will not send out and "update alert" each time.. so just check back when you can, and please sign his guest book if you have the chance, we both like to read the entries, it helps.
Much love to all and a happy holiday season.

Justine

Friday, December 06, 2002 at 11:07 AM (CST)

Hi All,
I have not posted in a while because I wanted to have all of Lance's results before doing so.
Lance had his bone scan last week before Thanksgiving and the results were not good, but I wanted to wait till he had his MRI this week before posting any news since a bone scan can be inconclusive, so here it goes....
The bone scan impression said there were multiple areas of bony uptake, some increased and no areas of improvement were identified, which likely represents worsening metastatic disease. But it also said that if the patient was recently treated with chemo (which would be the Gleevec) that the lit areas may be a response to the chemo.
I got the MRI report yesterday and was hoping that there would be areas of improvement to verify that maybe the lit areas on the bone scan were due to response, but, the MRI showed that all of the disease seen in his previous scan is unchanged, no better, no worse, as far as I could understand. BUT he does have a NEW lesion in his thoracic spine in the middle of his back. This does not leave me feeling very hopeful that the Gleevec is doing anything. My opinion only, but it seems to me that if it were working he would not have so many areas of new disease. The bone scan indicates new disease in his right humerus, right iliac bone, and both tibias amount a few other areas.
Last night Lance and I were cuddled up watching TV and he got a shooting sharp pain in his back, which was in the area that the MRI indicated a new lesion. (Lance did not know about this new spot).
Needless to say, I am sick over this.
Otherwise, Lance has been feeling ok, a little pain here and there and of course the NEW pain last night, but he is in pretty good spirits and doing well considering all of the disease he has in his little body.
This disease is a relentless monster.

God bless,
Justine

Saturday, November 23, 2002 at 03:15 PM (CST)

Hello everyone,
I just wanted to put out an update before Monday. Lance will be having his bone scan on Monday, November 25th and then an MRI on December 4th. PLEASE PRAY HARD THAT THE MEDICATION IS WORKING!!! (Gleevec)
We should know bone scan results on Tuesday, so I will be keeping this site updated frequently.
Lance has been doing well lately, not much pain, just a little here and there but nothing to really prompt him to take a whole lot of pain meds. His spirits are back up and yesterday he and I had BIG belly laughs all day! (Must have been the Red Bull we were drinking!) His counts are staying up and in general he is doing OK!!!! His weight is a bit down, so we are working on that. I am adding whipped cream to EVERYTHING!!!!! (KIDDING)
Since his pain has pretty much diminished lately, we are hoping that is the Gleevec doing the job and killing the monster that lives inside him.
Please keep him in your prayers.
Love,
Justine

Saturday, November 16, 2002 at 05:31 PM (CST)

Hi all,
I just wanted to give you a quick update on Lance.
He has gotten MUCH MUCH better. His pain has somewhat diminished and we are hoping that is due to the Gleevec doing its work to kill the monster.
He is less depressed and is actually smiling again.
He still has some tears now and then but for a while there he was like a depressed zombie and in pain all the time.
He looks much better and has even gained a couple of pounds. He got down to 85 lbs recently (his all time low during treatment was 83) SO he is quite thin. When he was diagnosed he was 104.
He has more energy now due to a blood transfusion he had last week and all his counts are holding pretty well right now.
He will have his scans done on the 25th so we will see what is going on. Hopefully this Thanksgiving we will have something to be thankful for regarding Lance, although I am thankful everyday he is still with us!
Please pray that this upswing continues for him.. it has been a heartrenching 6 wks.
Thank you for all your continued support and prayers.

Love to all,
Justine

Tuesday, October 29, 2002 at 03:45 PM (CST)

PLEASE SEE BOTTOM OF THIS UPDATE

Since Lance started the Gleevec study, he has steadily gone down hill. He has been depressed, in pain, stomach upset, not much appetite, weight loss and his counts have dropped.
Today at his clinic appt. his Hemoglobin dropped below the required amount for the Gleevec study, so he has been suspended. I am very mixed emotionally because now he does not have anything fighting the monster, but I have reset my mind and agression towards getting him buffed up nutritionally again. Seems as though when we stopped all the nutrition, he did a nose dive. So now I am focusing on getting his weight back up and he has started an antidepressant that will hopefully lift him up emotionally.
Today was very difficult at the clinic because Lance and I were both very tearful. I thank God for our wonderful doctor, Greg Thomas, who is so very compassionate and he could see that I was hurting today.
He has started a new pain medication that hopefully will help keep it under control a little better, it is called Methadone. Hopefully this will work for him since everything else we have tried he has an itching reaction to.
Please pray for my baby, he has really been suffering, it is so heartbreaking to see him like this.

Our fundraiser has somewhat come to a halt, so if anyone could pass along the info, I would appreciate it, we have to keep going with it as I am going to try to get him to the Washington clinic as soon as he is scanned again.
We met about 1/3 of our target amount. The donations have helped a GREAT deal for his nutritional supplies which are very costly, so thank you so very much to all of you that have contributed and passed along the information regarding the fundraiser. I can not even express my gratitude adequately, it has been a huge help so far.

I will keep this posted frequently as I anticipate that Lance is going to start feeling stronger again soon.

God bless and thank you all for your continued love, support, prayers and financial help.

Love to you all,
Justine

OCTOBER 30, 2002
Last night I received a message from Lance's doctor saying "he CAN stay on the Gleevec". Talk about a up and down nightmare roller coaster ride!!!!!!!!!!!! I had to "accept" the fact he was taken off, wrap my brain around something else.. and then WHAMMO!
Now I do not know what to think!
Part of me was "relieved" that he was taken off the drug for a while so I could get him built back up. Now what?
I guess doing both nutrition and the Gleevec isnt a horrible thing, but when he is on Gleevec, he doesnt feel like taking all of his supplements, I am so confused right now I feel like I am going to break into a million pieces.
Please God give me the intuitive thoughts on what to do.

Monday, October 07, 2002 at 06:36 PM (CDT)

Hi all,
Well Lance officially started his Gleevac clinical trial on Thursday night. So far he is having no side effects. (he could get nausea, diarrea, etc) He is been in a lot of pain though lately in both legs and groin. Please pray for him as I am worried about him, he doesnt look well or feel well at all. He will be having surgery on Thursday, October 10th to have a Port placed in his chest for easy access for blood draws. Since this is a clinical trial with Gleevac, he needs to have his blood tested twice a week. We all decided that instead of them poking around with the few veins he has left, to have the port surgically place. He will still have to be poked, but atleast his veins wont "roll".
We have moved into our new house and he loves it. It has twice as much space and a bigger canal for his boat, which he LOVES to go out on.. It gives him some freedom, of course I worry like h*** when he is out there, but I have to let him go and trust he will be ok. Thank you Grandpa Bob for such a WONDERFUL gift!!!
I have updated the photo album with some new pictures, please check them out and sign his guest book if you have the time.

October 9th, 2002
Please say some prayers for Lance, he has had some pretty considerable pain in his legs the last few days, I had a hard time getting it under control last night, but he seems a little better today. He is going in for is Pre-Op appt today for tomorrow's surgery to place the port in his chest.
I am going to speak to the doc this morning and see if the leg pain might even be muscle cramps, which can be a side effect from Gleevec. He had a KNARLY charly horse this morning that had him screaming. Scared the "you know what" right out of me.. So it is making me wonder if some of this is from the Gleevec.

Thanks for checking in,
Justine

Sunday, September 29, 2002 at 09:42 AM (CDT)

Hi all,
Sorry I have not updated in so long.
It has been BEYOND hectic and a very exhausting two weeks.
Lance started having pain again a few weeks ago in his sternum area, groin and lower back..

Here is the scoop:
We got the results from the CT and Bone scan.
The CT and Bone scans show progression and/or new disease in the upper chest (soft tissue), sternum, pelvis, pubus, poterior ribs, plura and the base of his skull.
All of the other areas of his spine and ribs have gotten worse. I have my medical dictionary out and am in the process of deciphering some of this.
We got the MRI results and they are actually GOOD.
They compared this MRI with the MRI of a few months ago and some of the cancer spots are UNCHANGED.. there are even 3 different places that they mention "dead tissues or cells"
There is one spot that actually looks "resolved"! There are NO new spots or growing spots on this report. This is GREAT news!

All of his organs at this point look normal (thank God!)
His doc is getting the ball rolling to get him started on Gleevec this week.
Its amazing, Lance is feeling pretty good and optimistic. Last Sunday his grandfather brought him a BOAT! It is a little 8-10 ft row boat (we live on a canal that leads to the lake) and my husband went out and bought a little electric engine. Lance is thrilled!!! We got some good news too, a house we have been trying to get came thru last friday (same day as all the scan news, ugh) It is also on a canal but is much larger then the one we live in now, so he is REALLY excited about that! So is his mommy!

THE ABOVE WAS WRITTEN LAST WEEK.

This last Friday, Sept 27, Lance and I went into the clinic and he had his blood tests done and urine test for the Gleevec study. He was accepted and he should be on the medication by next week sometime.
We are going to get him going on this Gleevec for a few months to knock (hopefully) some of the tumor out THEN proceed to the clinic up in Washington sometime following the next scans to hopefully get rid of the rest. I have agonized over all these decisions, do we take him to the clinic first and risk loosing the opportunity to try the gleevec? so on and so forth.... bla bla bla
I am TRULY exhausted, mentally and physically. I can feel my body has taken a great toll recently, I seem to always feel "sick". Well,, enough about ME.. I am happy to report that Lance has been feeling SOOO much better the last 4-5 days and has hardly had to take pain meds. YIPEEEE!
The only part about this study that Lance is very apprehensive about is the fact that since it is a study, and basically he will be a human guinea pig, he will have to have his blood work done twice a week. Meaning, getting POKED by needles. We are trying to talk him into getting a "port" placed into his chest. It would be an "access" to his blood stream without tubes hanging, dressings to change, etc. I believe the entire thing is UNDER the skin.
He will, however, still have to be poked where the port is, but we can always numb that area.

A note about our continuing fundraiser.. Since the checks go directly to the bank, I have NO way of knowing who has sent what.. (bank will NOT copy checks for us)..
SO.. I WANT TO SAY A HUUUUGE THANK YOU TO ALL OF YOU THAT HAVE CONTRIBUTED.. IT HAS MADE A HUGE DIFFERENCE.. WE ARE AT ABOUT 1/3 OUR GOAL!! Thank you all for your kindness and generosity!!!!!!!!!!!!!
Now that our date has been moved back for the clinic we have a little more time!
To all of you that are not in a financial position to help with this, PLEASE DO NOT FEEL BAD!!!!!!!! I know that times are really hard financially for people right now.
I know with all my heart, that people will do what they can, and I would never want more then that. We know that we have so many prayers and so much love and feel truly blessed for that. SO, thank you ALL, for your continued support, prayers and love, we can feel it ALL.

Oh.. ONE more thing.. we are MOVING TOMORROW! Yes.. we are truly nuts to be moving at this time.. but as I mentioned above, this is a GREAT house and we will all have a lot more "space".

Our new address is
17211 Blue Heron Road
Lake Oswego, OR 97035

(503) 636-3414

My cell phone is 503-309-7678.

Much love to you all,
My continued prayers for ALL OF OUR BABIES fighting this horrendous monster, and all my love and prayers to their parents..
God Bless,
Justine

Tuesday, July 30, 2002 at 06:29 PM (CDT)

Hi all,
Lance has been having quite a bit of pain this last week and I have been beside myself worried about him.
The pain started AFTER he was lifting big logs to build a fort, so we are all thinking he strained some muscles he hasnt used in a while.
He will be having scans again in about 6 wks.
His blood counts all look good and he is doing pretty well all in all.
We are starting a fundraiser to help with the expenses of Lance's treatment. Insurance companies do not cover "natural" therapies and lately it has been very hard for us to keep up with the costs.
I started a new website and all the information can be found on that.
It is at www.healthisinaction.com or you can get there by going to www.justinesaylors.com.
Thank you all for your continued prayers, love and support,

Justine

Wednesday, July 03, 2002 at 10:26 PM (CDT)

I recieved the news today on Lance's scans and the news was not encouraging.
Lance seems to have metastatic disease in many many areas of the body. Seems almost all bones are affected.
The tumor in his neck seems to be bulkier.
The doctor said today "with the amount of disease that shows (just about everywhere) he has NO pain, he said that is in his words "just WEIRD". He tried to keep me encouraged by saying Lance looks better then he has ever seen him look, and to keep doing what we are doing.
Things are a bit questionable since the bone scan that they have to compare with is August of 2001. SO all this disease may have have shown up had they done a bone scan at the time of mIBG scan back in February, which the mIBG scan DID show disease all over. SO we can not really say that the bone scan is worse, since we dont have a recent one to compare with. But it does come down to this, Lance has a LOT of disease in his bones.. BUT he feels great and has no pain, which is VERY inconsistent with his scan and his type of cancer.
I think the next thing we need to do is get another mIBG scan so we have something more recent to compare with.
I am hoping all this makes sense.
I am going to be even more deligent with Lance's regime now. He feels good.. that is what is important right now and I am positive it is the nutritional support that is making him feel so good and keeping him with us.
This news today just about put me under, but now I feel more focused then ever.
Please continue praying for my little warrior.
He is truly amazing, and he IS a miracle.

Love to all,
Justine

Friday, June 14, 2002 at 07:41 PM (CDT)

Hi,
This is just a quick update to let you all know that things seem to be continuing to go well with Lance. He has a little pain recently, which is obviously always a huge concern, but his pain recently seems to be more consistent with his activities. He has been in school now for over 3 months and they finished their school year yesterday with a dance. I am so happy that Lance got to go to his first dance!
Lance will be having an MRI on July 1, and then a bone scan on July 2, please say prayers for this, as I am very anxious about what is going on on the "inside".
Thank you all for your love, prayers and support thru this incredibly difficult journey.

Justine

Wednesday, May 08, 2002 at 04:36 PM (CDT)

Well Lance saw his oncologist again last week and again he got a HUGE grin on his face and said.. Keep doin what your doin.
He could not believe how well Lance was doing and how great he looks.
Lance said to me last week that he no longer even feels like he has cancer. Hoooooreeeeeeeeeyyyyyyyyyy!!
I am waiting to hear back from the doctor regarding when he will be having his next scans. It will be in the next few weeks.
I am very curious to see what the cancer is up to. I do know that it doesnt seem as though it is growing, otherwise he would be in pain. He has NO pain. So we shall see.
I have been hearing more and more positive stories regarding the use of Wormwood to treat cancer. I am so grateful to Dr. Singh and others that have given me the nutrient resources. I have not felt "hope" in so long that sometimes it feels like I am waiting for the "other shoe to drop".
ONE DAY AT A TIME. I am so grateful that my baby is here with us today!!!
Thank you all for all your support.
Love,
Justine
I will post as soon as I know the dates of the scans.
OH ONE MORE THING!!
I almost failed to mention the fact that Lance is in California with his dad on vacation, going to the beach, seeing relatives and friends and going to Disneyland~~~!!!! WOW! We did not even think he would be here in May!!!
THANK YOU GOD!
He is having a blast!!!!!!!!!!!!!!!!

Wednesday, April 24, 2002 at 08:00 AM (CDT)

Hi!
I havent updated lately because there have really been no changes EXCEPT Lance CONTINUES to feel better!!!!!!!!!!!!!!
He looks great and said to me last night "Mom, most the time I do not even feel I have cancer" !!
The other day he went to take off on a peddle boat ride and said "because my legs feel so strong" YIPPPPPPPPPPEEEEEEEEEE
Also, he had a scab on his head that would NOT heal, it has been there since Sept.
Well, it is now healing beautifully. GO FIGURE! I am so grateful for this day!
In January, I did not think we would even have him anymore.. and he is feeling better then ever! I have him on so many nutritional supplements (whole foods, enzymes, ambrotose, barleygreen, etc.) and Dr. Singh's treatment, I am not sure WHAT is doing it, maybe its the combination of all!
I have no idea what the cancer is doing right now, but I would think that if it was continuing to spread, he would be in a great deal of pain, and he has NO pain.
He will see the oncologist on the 30th of April and then be scanned again sometime in May. But for TODAY.. he is feeling great.
Thank you God!

Love to all,
Justine

Tuesday, April 02, 2002 at 04:42 PM (CST)

Hello,
Today we went in to see Lance's oncologist. He got a BIG GRIN on his face and said Lance looks the BEST HE HAS EVER SEEN HIM LOOK! Lance FEELS GREAT! He looks healthy :) Lance tells me he feels stronger! I mentioned in the last post that we were going to start a nutrional progam.. well we started about 3-4 weeks ago on the nutritionals and then we started another type of therapy thru a Dr. Singh up at Washington State University. It is an all natural therapy derived from the wormwood plant that Dr. Singh has perfected.
He has been treating a local child that was dying of cancer and this child is now doing AMAZINGLY WELL! I must mention that this little boy named Daniel used to be treated by Lance's OLD oncologist at his old hospital. They did not have much hope for Daniel and he was actually dying and had a few days left. He started Dr. Singh's treatment and by the next morning his vitals were coming back.. a few days later he walked (he had not been walking) out of the hospital. To this day he is doing wonderful! I started Lance on Dr. Singh's treatment 10 days ago.. we figured at this point it certainly cant hurt.
All I can say is that TODAY and actually ever since Lance started the nutritional, he has done nothing but go UPHILL. He is even getting strength back into his hands.
I will keep everyone posted!!! Please keep the prayers coming! I think they are working!!! YIPEEEEEEEEEEEEEEE

P.S. We have gone into this having absolutely NO expectations.

Love to all,
Justine

Thursday, March 21, 2002 at 01:00 AM (CST)

Well, we got the results of Lance's mIBG scan and they were worse then we thought.
Lances cancer is in his skull, spine, neck, collar bones, pelvis, and both upper femurs.
This news absolutely destroyed us, I knew it would not be good.. but did not think it was THAT extensive yet.
There are a couple of different options that he could do in traditional oncology.. but basically they would wipe out his immune system and blood counts that he is already very short of.
Lance is electing not to do more "chemical treatment". So obviously, at this point our time with him may be limited.
I have started a whole new approach with a wonderful new Naturopath, Dr. Laura, who is one of the most soothing people I have ever known. I am also now working with another doctor named Bill who is working on him nutritionally. I am building up his immune system with supplemental therapy and so far he is feeling pretty good. If anybody wants details on this please email me privately, there is a link on the homepage.
Lance is in pretty good spirits and having somewhat minimal on/off pain. We are keeping him on Tylenol Codeine to keep the pain in check, but today he did say his leg was hurting pretty badly.
To look at Lance right now.. you would not even think he was so ill.
We had a WONDERFUL time in Hawaii! It was PURE MAGIC.. Thank you Eric for pulling this off (and Dick too!) We got to do the Dolphin Quest Family experience which was amazing! The weather was SUNNY and about 82-85 everyday! It rained twice while we were there in the middle of the night.
The ocean was INFESTED with humpback whales! Everytime you looked out you would see atleast 5-10 groups.
I found out something very cool from a friend of mine and tried it.. if you dive under the water a few feet, you CAN HEAR THE WHALE SONGS! You know all the recordings you have heard of whales? well that is what it sounded like!
Lance experience quite a bit of pain over there and was having some difficulty walking.. but he just kept on going and the pain was kept under control! It was a wonderful experience. The Hilton Waikoloa Village is truly an amazing hotel!!!!!!!!
The new pictures are up so check them out and please if you have a chance sign his guestbook.
Please pray for my baby.
Love
Justine

Monday January 28, 2002 9:17 AM CST

Hi all,
I have been horrible about updating this page. Usually I do not update unless there is something really going on. Things have been quiet for the most part for the last two months although Lance has now started experiencing pain again and is on pains meds pretty much round the clock.
He had an MRI last Friday and I am ANXIOUSLY awaiting these results.
As soon as I receive them I will post immediately to this page and also update the site with new pictures.
Please check back!!!!
Love,
Justine

Friday, November 30, 2001 at 09:41 AM (CST)

Hello all and Happy Holidays
This season really brings in a lot of different emotions. Last year at this time we JUST returned home from the hospital after Lances long stay in Doernbecher’s Hospital for his Autologus Bone Marrow Transplant. Seems so far away, yet, sometimes it seems like yesterday. So much has happened in the last two years.
Lance has been doing ok lately. He has a little pain now and then but is usually controlled with Tylenol. When he started getting pain back in his hands a few weeks ago we got very concerned it was the tumor around his spinal cord in the neck area, possibly pushing the spinal cord again, like it did over the summer and he received radiation for that. He had an MRI and it came back unchanged. PHEW!
If it was pressing again, that would be very bad news, as it would mean that that particular tumor is fast growing.
He STILL has the tumor though.. right now we are deciding on options for that.
He may get more chemo, or he may have surgery. He will be seeing a specialist hopefully very soon regarding the surgery.
I am going to ask the doctors to do a BM (bone marrow) aspiration also to see what is going on in his bone marrow and how many, if any, Neuroblastoma cells are there.
This is very important in determining what treatment we are going to go for.
Lance is feeling somewhat good right now, although he is pretty bored most the time.
Unfortunately his mom cant entertain him all day long.
He is meeting with his school principal today to determine what we will do with his schooling. He is afraid to go back since he does not have very good use with his hands.
He is afraid of looking different, which I do not blame him on that one at all. It has got to be so hard. I am going to ask the doctor if the problem in his hands may be do to arthritis, it is quite common I have heard for Neuroblastoma Kids to get arthritis.

NOW,, THE REALLY GOOOOOOD NEWS!!!
Tomorrow we are going to pick up a brand new little baby girl puppy.
She is a purebred golden retriever and she is just absolutely DARLING!
She is an absolute GOD send.. It is pretty amazing how she came to be in our lives.
I will post that another time though.
She comes from a wonderful woman name Alicia who breeds “guardian angels who just look like golden retrievers”!!
I am so happy about this and I can not wait to see the look on Lance and Lauren’s face when they see our new addition to our family.

Lance had a CT scan on Wednesday to check the bony areas of his scull (per my request)
I will post the results for this as soon as I get them.
Also I think I am going to request a bone scan and have him scanned head to toe.
I want to make sure we know what we are dealing with right now in every way.
For some reason, maybe it is the holiday season, or maybe it’s the new addition to our family, I feel HOPE. We will NOT give up!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Love and prayers to all of you
And Happy Holidays!!!!!

Saturday, October 20, 2001 at 04:37 PM (CDT)

We got Lance's scans back. The MRI showed that there is NOOOOOOO cancer in his brain.
The tumor is still at the top of his spine/neck, however, it has receded from the spinal cord. We are in the process of deciding what to do next. We are going to take him to see an Ortho surgeon who has a reputation of working wonders, who knows, maybe he can remove the remainder of that tumor. We do not have a whole lot of options at this point so I am getting serious about alternative meds. His other option is chemo. :( Lance does not respond to chemo.
At this time Lance is feeling good and getting a reprieve from the pain he was experiencing. He wants to go back to school for a few hours a day, a few days a week.
His tutor has started coming to the house also. They seem to be getting on just fine. My girlfriend Christie is coming now 4 days a week in the mornings and part afternoons to help me so I can get out of the house a little and go to the gym or whatever I need to do. I have found that working out helps tremendously with the stress and I am better able to take care of Lance when things get rough for him. Christie is also a nurse which is a big bonus :) I do not know what I would do without my dear friend.
We are all doing ok right now and anticipating the quickly approaching holidays. I can't believe its "that" time of year again. Last year at this time we were getting ready to go in for ABMT.
It will be nice to be in our home this fall.
Thats it for now.. will update as soon as something is new.

Love,
Justine

Friday, October 05, 2001 at 09:30 AM (CDT)

Tuesday, October 2, 2001 was Lance’s Make a Wish Evening.
At 4pm we were picked up by a Limo and taken to dinner then to the Rose Garden Arena to meet Diana from the MAW Foundation. At that time she called the stage manager who came upstairs and led us back downstairs to a “cage” area backstage to wait to MEET the BACKSTREET BOYS!!! He then informed us that the BSB would be meeting about 60 people before us and that it was arranged that we be last so that they could spend more time talking to Lance.
They moved thru the 60 or so fans that they had there waiting for them pretty quickly but very graciously. The hugged all the “little” ones J
Then it was our turn!
These five guys were soooooooooooooooo NICE!!!!!!!!!!!!!!!!!!!!
They were amazing to Lance and wonderful to us too! (Lauren, Eric and I)
We took pictures and they signed a couple things for Lance and Lauren and then Lance gave them “pocket” angels and shamrocks made out of pewter. One of the BSB’s commented that one will watch over them and the other will give them luck.
We then went and took our seats in the 3rd row to be treated to the BEST concert that I have ever been to in my life!!! The energy that they put out was amazing, and they seem to really adore their fans.
There is definitely NOTHING arrogant about the BSB. They were truly “NICE” guys with OOOOODLES of talent!
Needless to say, Lance’s mom is now their biggest fan!!!!!!!!!!!!!!!!!

I have posted one picture of Lance and the Boys in the photo album and will be posting two more hopefully today. Please check back as I will be interchanging them thru out the next couple weeks J

God Bless,
Justine

Friday, October 05, 2001 at 08:23 AM (CDT)

Wednesday, September 26, 2001 at 07:58 AM (CDT)

Lance is doing better these days after 2 wks of agony. The day after Lances first day of school he woke up in horrible pain which was already at the unmanageable stage.
I took him in to the hospital where the put in an IV and gave him morphine, then they sent us to radiation early. By the time we got to the other side of the hospital, he was in horrible pain again, so we turned around and went back to the clinic where they gave him a shot thru his IV of fentanyl. Then off we were again to the radiation dept. and he was STILL in pain. The doctor gave us a prescription for Oxycodone, which DIDN’T help either. I remember at that time his Neurosurgeon had prescribed him valium for spasms in the past, so I suggested that to the doctor and that finally helped a little bit.
This went on for 2 days! It was absolutely horrible and I felt so helpless and at the same time I was afraid of overdosing him.
Also at this time I got the doctor to prescribe Fentanyl patches. These are like a quit-smoking patch that you apply to your skin and it gives round the clock pain medication and each patch lasts about 3 days.
His pain is better but he is still weak in his hands. I’m not sure when he will return to school, or if he will.
I am going to check out a charter school where the kids work at their own pace. It sounds ideal for him.
October 8th, we will be rescanning him to see what the radiation did for the tumor. We will also scan his brain at this time. Please say a prayer for him.
I updated this site a few times only to type it all out and have the web site NOT post it.
UGH. Like I have the time.. so again, I am saying I am sorry for such a long stretch of no posts.
This time I typed it (thanks Shannon) in to Word!

Please check back.
Love,
Justine

Wednesday, September 05, 2001 at 08:20 AM (CDT)

Lance started Athey Creek Middle school yesterday with such excitement! He was going to see his friends and get his very own locker which he could decorate with pictures. It was so sweet to see how he "prepared" for this very important day.
We went to school at 9 a.m. and he got his name tag and instructions to what group he would be in. He was feeling a bit lost till he found his best friend Matt O. and then they were off! I stayed for the introduction assembly and actually didnt end up leaving the school till almost 11.. there was so much excitement :)
Unfortunately.. excitement and expectations can be our worst enemy.
I picked Lance up at 3:45 and he was one tired BUMMED out kid. He was di,sappointed that his friend Matt and he were separated at 3rd period, and although he had his oldest friend Natasha in all 6 of his classes, well, she is a girl.. and hangs out with the girls now. :) who could blame her. There are not that many familiar kids at the school which really surprised Matt O.'s mom and I. So therefore Lance did not really know anyone in his classes besides his two friends. Then to top it off.. I packed him a great lunch and he could not get his locker open to get it.. He spent most the lunch period trying to get it open and by the time he gave up, lunch was almost over and all he had time to eat was some fries, by himself. This was NOT what Lance had in mind. It absolutely broke my heart since this really may be the only full day he will have for quite some time.
Today he will go in the morning for a few hours till I pick him up at noon to take him to Radiation/Oncology for his evaluation. Im sure by the end of this week he will be receiving radiation and hopefully it will be in the afternoon so he can atleast go to a couple of classes in the morning.
I am not sure how he will feel today for going to school since he woke me up at 2:30 a.m. in pain and I had to give him medication which may leave him a bit groggy this morning. Otherwise he is doing pretty well with the pain issue.
Lauren, Lance's 9 yr old step sister started her first day as a 4th grader yesterday also. I think there was some disappointment there too :( Hopefully today will be better for both of them.
Thanks for checking in,
Justine

Friday, August 31, 2001 at 08:43 AM (CDT)

Hi all.
Lance had all his scans done and we got the results back which had pointed to stable disease. But then he started having pain in his upper back and weakness in his hands. He had this when he was first diagnosed almost two years ago and it was due to his tumor pressing against the spinal cord. Lance had an MRI on Wednesday and I got the results yesterday. Lance has a NEW lesion about 2-3 inches long in that are and it is slightly pressing on his spinal cord again. This monster disease just doesnt even want to give him a break! I hate Neuroblastoma. The options to treat are chemo (which really isnt an option since he doesnt seem to respond to it) radiation or surgery.
We are opting for the least invasive treatment at this point which will be radiation to the area. If that doesnt shrink it fast enough he will have to have surgery to decompress tumor along the spinal cord.
Dan and I met with the entire 6th grade team yesterday including the school principal yesterday to discuss Lance. It was very difficult to sit in front of like 12 people after just receiving this news and Dan and I both choked up quite a bit.
This school will do whatever we want whenever we want for Lance. We are hoping he can at LEAST make it to the first day of Middle School on Tuesday because it is a big orientation day and PICTURE day and it is ONLY the sixth graders!
I wish I could give you all some better news.. this Neurblastoma really sucks.
I will keep this posted almost daily as to what is going even if there isnt really anything going on .. I will still post on Lance and his days.
Thank you all for your love and prayers.
Please check back and also please sign the guestbook.
Thanks,
Justine

Wednesday, August 22, 2001 at 02:42 PM (CDT)

Hi,
Ok.. I gotta say sorry this has taken so long AGAIN, it seems that ALL my journal entries start out with an apology. Im trying though..
We got the results from all of Lances scans and AGAIN the are totally contradictory to each other. The MRI reports a lot of cancer activity in the spine and the Bone Scan reports minimal activity at the top of the spine. So, basically we are clueless.
We DO know that he doesnt show any cancer in his arms, legs or skull, which is GREAT because he did have some there before. We will find out our next move next week when we meet with Lance's oncologist. Right now the MRI dept is comparing the new scans with the old ones and trying to come up with something.
Doctors are talking about doing an MIBG scan and also a type of urine test to monitor tumor activity. I will keep you posted on what we decide to do and what the doctors say next week about the MRI dept. report.
Meanwhile, Lance and his Dad have been in Minnesota for 10 days now and he is not returning till the 26th. I miss him horribly but hopefully he is having a BLAST!!!!!!!!!!
They are up on the north shore of Lake Superior right now with his aunt and uncle and his cousins.
Anyway, that is it for now.. till next week when hopefully I actually KNOW something about the scans.
Take care and please check back
and sign the guestbook!
Thanks,
Justine

Tuesday, August 21, 2001 at 02:52 PM (CDT)

Hello everyone,
Im sorry this has taken so long to get the scan results posted. The reason is, is that they are inconclusive (AGAIN) The MRI was showing a LOT of cancer activity again and the Bone Scan showed only activity at the top of the spine. Since they are so contradictory again, the MRI dept is in the process of comparing all the old scans with this recent one. Hopefully we will have an answer next week. We are not quite sure what is next at this point. The doctor has mentioned a urine test which tests the tumor activity and also an MIBG scan..
I will find out all about that next week when Lance returns from Minnesota with his dad and we go see his doctor again.

Lance has been in Minnesota for 9 days now (I MISS HIM TERRIBLY) with his dad visiting his cousins and grandpa and aunts and uncles. He is on the North Shore of Lake Superior right now at a resort called Lutsen.
I am sure they are all having a blast :)
I heard the other day he has been feeling good with no pain and just a minimal amount of anxiety.
He will be home Sunday the 26th and of course I am anxiously awaiting his arrival!!!
Please bear with me.. I really do try to keep up on posting this site. I will again as soon as we receive any kind of news from the doctor.
Much love to all
and God Bless,
Justine
*** I have updated Lances photo album :)

Saturday, August 04, 2001 at 10:39 AM (CDT)

Hi everyone,
I am sorry that It has been so very long since the last update. I really seem to be bad at doing it. I somehow realized the importance of this just this morning (Thank you God) We have had a bit of a rough month here. Lance finished his Accutane and towards the end (after realizing that he is probably not going to survive this montster) he went thru some horrible anxiety attacks. He does not seem to be upset at all about the fact he will probably not survive, as a matter of fact he says he "can not wait" to be in heaven some day and be rid of the pain and stress.
Monday, Aug. 6th will we will begin the scanning process again, and Mom here is not doing well at all with that. I need all of your prayers to keep me strong during all this with Lance. He will have CT, MRI on Monday, then his Bone scan on Tuesday.
Please pray that it goes smoothly for him.
He will be sedated for the MRI, so that will be a breeze for him. CT is also a breeze except that yukky stuff he has to drink first!
Bone scan is always a bit long so lets pray he gets thru it ok.
I WILL be updating next week on scans and also I have a TON of great pictures from this summer on the lake.
I will be updating those also.
God Bless everyone,
Justine

Tuesday, June 05, 2001 at 11:08 PM (CDT)

Howdy all
Sorry havent updated in so long.. there really hasnt been much activity, except for our big move :)
Lance is still on the accutane treatment and just finished 4 out of 6 rounds.
We got word from Make a Wish Foundation yesterday! They are sending a limo on August 10 to take us to dinner (they are also giving Lance $200 to spend on a REALLY kewl outfit for this night) then they are taking us to the Back Street Boys concert, where we will get to meet all of them and attend the concert!!! HEHEHEHEH!
They are even giving Lance souvenir money!!!
HOW COOOOOL IS THAT???? I think I am actually more excited then Lance is!! HEHEHEHEHEHEH!
Anyway.. all is pretty quiet right now regarding Lances health.. we will get all the scans done again after he finishes Accutane, which should be sometime late summer.
For now it is just "One day at a time"

Love,
Justine

Thursday, April 12, 2001 at 08:56 AM (CDT)

Hi there,
We finally got the results from the PET scans. The PET scan showed activity around the spine consistent to the MRI. The only thing is.. the doctors dont know if the activity is regenerating bone marrow or cancer. (UGH) The doctor did show me the scans though. All the bones in his spine should be consistent in color.. and they are not.. possibly indicating he has cancer all thru his spine.
We are going to continue with the accutane treatment (high dose vitamin A) for the rest of his six month period. He will finish that by August. Then he will be scanned again to see if there was any shrinkage from that. At that time we will decide what is next.. if anything.
Lance is feeling very good right now and has his hair back. He also has his appetite back and again is a walking human garbage disposal! hehehe! It is so good to see him eat, after all, I can remember when he did not eat for an entire month.
He will be returning to school next Monday on a part time basis.
We are getting ready to move to a little house on the canal off of Lake Oswego. Lance and his soon to be step sister Lauren are very very much looking forward to this.
The house has a wonderful back yard that is enormous with HUGE fir trees, redwoods and beautiful lawns and landscaping, best of all it has a dock on the canal so the kids can go on a peddle boat in the summer :)
The movers are coming on the 27th! YIPEE :)
Thanks for checking on the Lance Man!
Love,
Justine

Tuesday, March 27, 2001 at 09:31 AM (CST)

Hi,
We are still waiting for results for the PET scans that were taken last week.. supposidly we will get them today.
We had a bit of a scare this weekend..
Lance woke up at 3:45 a.m. on Saturday and came in my room and said "Mom, I am having problems with my chest" He sounded like a SEAL! Being that Lance had croup quite a bit as a baby I knew I had to get him in some steam. We sat in the bathroom running the hot shower for what seemed like forever and that did not do much so I bundled him up and took him outside for some fresh air.
That didnt help much either. We went inside and he really started coughing and having a tough time so I called his doctor and she instructed me to get him to ER since he sounded like he was having a little trouble breathing. I was getting ready to take him and he started have a very hard time getting a breath and started panicking. I had to call 911. The fire department and an ambulance came and got him going on oxygen immediately, they transported Lance and I to Emanual Hospital where they gave him a treatment to help reduce the inflamation then gave him a dose of steroids and a prescription for steroids and we came home at about 9 a.m.
He is still coughing like crazy and seems to just have a common cold along with it.
He is very moody from steroids and thank God he is done with those!
I was so worried on Saturday morning because his doctors office had FORGOTTEN, even after being reminded by me, to give him his antibiotic that protects him from a certain pneumonia that could kill him!
So of course I was thinking Saturday morning that he had pneumonia. Thank you God that it was only a viral thing going on..
I am having some doubts about his current doctors office and am considering moving his care.. All the nurses at his current office that he knew and loved are GONE.
Not quite sure what is going on.. but when I asked the director of the office she snapped at me "life changes". So be it.
Anyway.. as soon I get the results of his PET scan (gulp) I will post it.
Thanks all for your love and prayers.
Justine

Tuesday, March 27, 2001 at 09:31 AM (CST)

Wednesday, March 21, 2001 at 04:55 PM (CST)

Today Lance had a PET scan.
We had gotten good news regarding his bone scan several weeks ago.. they said that Lance only had 2 spots remaining on the spine, and that it was looking much better.
THEN we got the MRI scans that were totally the opposite. They show that the cancer has multiplied on his spine and his spine is essentially covered. So today he had the PET scan done to find out what is going on for sure.
He has been on Accutane, which is an acne medication made with retinoic acid (vitamin A). It is like an "oral" chemo. It matures the cancer cells. He is feeling good, except for the skin peeling and chapped lips that are a side effect of the Accutane.
He will be going back to school part time so we are looking forward to that..
will be nice for him to get some kind of normality in his life ..
I will keep you posted regarding the PET scan results.. we should have them by Friday

Wednesday, March 21, 2001 at 02:53 PM (CST)

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