|
Welcome To Kohlman's Website !
It has been created to keep
family friends and visitors
updated and informed on
Kohlman's progress
Kohlman was diagnosed with Neuroblastoma, a rare childhood cancer on April 27,2004 at just 11 days old. Neuroblastoma is the fourth most common childhood cancer affecting one in 100,000 children in the U.S. every year.Infants have a higher rate of cure than do children over 1 year of age, even when the disease has spread. Stage 4s NB is also called "special"Neuroblastoma because it is treated differently. The cancer is localized with dissemination(spread)limited to liver, skin, and or to a very limited extent, bone marrow. Children with stage 4s may not require therapy. But in Kohlman's case since it had spread to his liver and his tummy got so huge that it took over his respiratory system and they needed to do emergency chemotherapy on him. He also had a C-PAP placed because of his oxygen levels.
To Learn More
About
Neuroblastoma
CLICK HERE
For My Son, My Gift
Here on your screen you meet Kohlman Robert. A young child with cancer, he is no longer a baby.
I gave him love, I gave him life and I gave him his name. Into our lives came this Beast it will never be the same.
He came to MAYO last April very ill, that is true. Dr.Rodriguez said,"with this
medicine I will give him back to you."
One might ask of God; "What did i do to deserve this?" But it is not God's way, He brings love, creates life and from Him it is our GIFT.
God, mother, nurse, and Doctor we all
work as a team with Kohlman as our captain from this fight we emerge winners, all scans will be clean.
With love and a prayer very soon you will know. God bless these seeds of life that havebeen planted, now
watch Kohlman's garden grow!
The Chosen Mothers
by Erma Bombeck
Most women become a mother by accident,some by choice and a few by habit. Did you ever wonder how mother's of children with life threatening illnesses are chosen?Somehow, I visualize God hovering over earth selecting His instruments for progagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.......
"Armstrong, Beth, son, patron saint Matthew" Forrest, Marjorie, daughter, patron saint Cecilia "Rutledge, Carrie, twins, partron saint Greard."
Finally, He passes a name to an angel and says,
"Give her a child with cancer." The angel is curious.
"Why this one, God? She's so happy."
"Exactly," smiles God, "Could I give a child with cancer to a mother who does not know laughter?
That would be cruel."
"But does she have patience?" asks the angel,
"I don't want her to have too much patience or she will drown in a sea of self-pity and despair.
Once the shock and resentment
wears off,she will handle it."
I watched her today," said God.
"She has that feeling of self-independence that is so rare and necessary in a mother. You see, the child I'm going to give her has it's own world.
She has to make it live in her world and that's not going to be easy. "But Lord, I don't think she believes in you," said the angel.
"No matter, I can fix that.
This one is perfect.
She has just enough selfishness."
The angel gasps, "Selfishness?
Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is the woman I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied.
She will never take anything her child does for granted.
She will never consider a single step ordinary. I will permit her to see clearly the things I see....ignorance,cruelty, prejudice....
and allow her to rise above them.
"And what about her patron saint" asks the angel,
his pen poised in mid-air.
God smiles and says...
"A mirror will suffice."
This poem is in honor of Kohlman's Great Grandma who just passed away this October. Her name was Katherine
but everyone knew her as Grandma Kitty. We deeply miss her but know that she is in a better place now.
SAVE A SPOT FOR ME
although i saw it coming,
i was so blind to see,
that now that you have left us,
you took a part of me.
now i thought that i would be fine,
but now i am torn apart,
but i know that you haven't left us,
cus you live inside of my heart.
i can see your smile,
as every tear drop falls,
but i'm not sad for i will see you,
when at last the good Lord calls.
Grandma, if you're in a better place,
save a spot for me,
please try not to fear Grandma,
for at last you're finally free.
now that you are gone,
i miss the times we had,
just thinking about you in that hospital bed
only makes me sad.
you always feared that you would die alone,
in a cold and desolate place,
but we were all there to see you off,
every single familiar face.
even though you are gone,
you have never left my heart,
and for this single reason,
we will never be apart.
So Grandma, if you're in a better place,
save a place for me,
for soon i will be seeing you,
when i am finally free.
 
 
BY POPULAR DEMAND !
PRESENTING KOHLMAN'S PHOTOSHOW !
*HUGS* TOTAL!
give KOHLMAN more *HUGS*
Get hugs of your own
The following poem is dedicated to honor the memory of Kohlman's great grandfather Bob Youngbluth who
Kohlman was named after and who
passed away 2 years ago this May..
I Dreamed Last Night of Heaven
I dreamed last night of heaven
As I followed you there
I felt your presence, heard your heart,
I almost touched your hair.
I remember crying
Just because I miss you so
Though I was right behind you
I didn't want you to go.
I begged for a reminder
To help me see your face
A thing to hold and touch
But it left an empty place.
I looked for you in everything
I asked for you by name
I know that you were with me there
I'll never be the same.
I dreamed last night of Heaven
I ache for one more glimpse
Of the love I felt while near you
And the beautiful heart I miss.
Ask my Mom how she is
My Mom, She tells a lot of lies
She never did before.
From now until she dies,
She'll tell a whole lot more.
Ask my Mom how she is
And because she can't explain,
She will tell a little lie
Because she can't describe the pain.
Ask my Mom how she is,
She'll say "I'm alright".
If thats the truth, then tell me,
why does she cry each night?
Ask my Mom how she is,
She seems to cope so well.
She didn't have a choice you see
nor the strength to yell.
Ask my Mom how she is,
"I'm fine, i'm well, I'm coping".
For Gods sake Mom, just tell the truth
just say your heart is broken.
She'll love me all her life,
I loved her all of mine.
But if you ask her how she is,
She'll lie and say she's fine.
I am Here in Heaven.
I cannot hug from here.
If she lies to you don't listen,
Hug her and hold her near.
On the day We meet again,
We'll smile and I'll be bold.
I'll say,"You're lucky to get in here,MOM
With all the lies you told!!"
-Unknown
The smell of rain
A cold March wind danced around the dead of night in Dallas as the
doctor walked into the hospital room of Diana Blessing. Still groggy form surgery, her husband David held her hand. That afternoon, complications had forced Diana..only 24 weeks pregnant to undergo an emergency cesarean to deliver the couple's new daughter, Danae Lu Blessing. At 12 inches long and weighing only 1 pound and 9 ounces, they knew she was perilously premature. Still, the doctors soft words dropped like bombs. "i don't think she's going to make it," he said. "there's only a 10% chance she will live through the night, and even then, her future could be a very cruel one."
Numb with disbelief, David and Diana listened as the doctor described the devastating problems Danae would likely face if she survived. She would never walk; she would never talk; she would probably be blind; she would certainly be prone to other catastrophic conditions from cerebral palsy to complete mental retardation; and on and on. "No! No!" was all Diana could say. She and David with their 5 year old son Dustin, had dreamed of the day they would become a family of 4. Now in a matter of hours that dream was slipping away. David said that we need to talk about making funeral arrangements, Diana remembers, i felt too bad for him because he was doing everything, trying not to include me, but i just couldn't listen i said,"no, that is not going to happen, no way! i don't care what the doctors say. Danae is not going to die! One day she will be just fine, and she will be coming home with us!"
Danae clung to life with the help of every medical machine and marvel her miniature body could endure but as those first days passed, a new agony set in for David and Diana. Because Danae's underdeveloped nervous system was essentially "raw," the lightest kiss or caress only intensified her discomfort-so they couldn't even cradle their tiny baby girl against their chests. All they could do was to pray that God would stay clost to their precious little girl.
As the weeks went by, she slowly gained weight and strength. When Danae turned 2 months old, her parents were able to hold her. 2 months later, though doctors continued to warn that her chances of survival, much less living a normal life, were next to zero, Danae went home, just as her mother had predicted.
5 years later, Danae is a petite but feisty young girl. she shows no signs of any mental or physical impairments. but this happy ending is far from the end of her story. One blistering summer afternoon, Danae was sitting on her mothers lap watching her brothers baseball team practice. As always, Danae was chattering non-stop with her mother. Hugging her arms across her chest, Danae asked, "do you smell that?" Detecting the aproach of a thunderstorm, Diana replied,"yes,it smells like rain." still caught up in the moment, Danae shook her head, patted her thin shoulders with her small hands and loudly announced,"no, it smells like HIM." it smells like God when you lay your head on his chest." tears blurred Diana's eyes as Danae then hopped down to play. Her daughters words confirmed what the blessing family had known all along. During the first 2 months of life, when her nerves were too sensitive for them to touch her, God was holding Danae on his chest, and it is his loving scent that she remembers so well.
ANGEL JEAN
CLICK HERE
The Littlest Soldiers
The medals on our chests
Are broviacs for meds
Helmets won't stay on
Cause no hair is on our heads,
Our weapons of destruction
We take every day
We fight the battle within us
While we struggle on to play,
We fight with honor and courage
No Marine could do as well
We are only children
Living in this hell,
So bring on the medals
The purple hearts of wars
The gold cross, the silver star
To place upon our scars,
For we are the children of cancer
No one has fought so hard
But every day we struggle on
Our LIFE is our REWARD!!
Kohlman Robert Eldeen
Born: April 16,2004 @ 11:29am Weight: 8lbs. 5oz. Length: 20 inches On 04-16-04 i noticed during Kohlman's bath that his abdomen was markedly distended, so i called his pediatrician Dr.Arnold to question her about it. We decided that since he had his 1st well baby check up the next morning that she would just take a peek at it then. So the next morning went as planned and Dr.Arnold came in and she said that Kohl had impressed her nurse with his huge tummy size. so she took a look at it and flipped out and told us to get to the ER immediately to get a x-ray done on his abdomen. so they did that and then they wanted to do an ultrasound. and they came back showing a mass on the adrenal gland and enlargement of the liver. So from there they sent us to Rochester Minnesota. He was treated at St.Mary's Hospital and diagnosed on April 27th by the MAYO Clinic's Pediatric Hematology/Oncology group.He was admitted to the Pediatric Intensive Care Unit(PICU)for further work up. When he got to the PICU, he underwent an abdominal ultrasound which was consistent with homogenous infiltration of the liver and right adrenal mass consistent with Neuroblastoma. An MIBG was done and showed diffuse infiltration of the liver also consistent with Neuroblastoma. So the ending diagnosis was Neuroblastoma stage 4s. He then started emergency chemotherapy per regimen p9461 on
05-01-04 through 05-03-04 without complications. For the first two rounds of chemotherapy he recieved carboplatin and VP16. He underwent resection of his primary tumor on June 21st. His 3rd cycle of chemo was cyclophosphamide and etoposide on July 8th. and a fourth round of chemo was carboplatin, etoposide, and adriamycin. Kohlman had many blood platelet and plasma transfusions...too many to count. Kohlman finished chemotherapy in August 2004 and they found through a CT scan that the cancer was gone. We now do scans in Sioux Falls every 3 months for a year and then i am not sure what the protocal is after that point.
Kohlman’s banner made with love by the Big Brave Banner Site
ANGELS AMONG US
r
Journal
Monday, April 27, 2009 2:10 PM CDT 5 years ago today, Kohlman was diagnosed with Neuroblastoma! It still seems like yesterday to me though! i remember everything that happened that day and how terrible it was. We had this sweet 11 day old baby boy who we thought was perfect...boy were we wrong(well as far as health wise)! But today i am just thankful to be at home doing whatever we feel like doing. No Chemo to worry about, no tests to be run, no blood to be drawn, no counts to worry about, and no G-CSF shots to be given....Except i did go into Dr.Arnolds office today to get his shot records for begindergarten and he is actually due TODAY for 1 shot LOL!! WE will be skipping that one today for sure! But we are just VERY thankful today and everyday that we have been given the chance to enjoy our beautiful little boy we like to call Kohlly!!
Read Journal History
Hospital Information: Patient Room: 217 Ronald McDonald House
850 2nd Street SW
Rochester, MN 55902
1-507-252-2187
Links: http://www.TheSurvivorMovie.Com The Survivor Movie
http://smilequilts.com/kohlman.html Kohlman's smile quilt
http://www.CureForNB.com Kohlman's name is on this list of Fighters
|
|
