Governor Perdue Presents Proclamation to CURE Childhood Cancer

http://curechildhoodcancerblog.wordpress.com/2009/09/09/governor-perdue-presents-proclamation-to-cure-childhood-cancer/

Saying Goodbye - CAUTION!!!

Jeremiah loved stickers! He would put them everywhere and had a blast doing it. So we made sure everyone could say Goodbye Jeremiah style by placing one of his stickers from his collection on the casket. His best pals Courage and Rescue sit on a Wiggles video on top of the casket. Courage and Rescue went through treatment with Jeremiah. They were there for all surgeries, chemo, and they were with him in the end.




We had a graveside service for Jeremiah. During the service we played one of his most favorite Wiggles songs. The chorus of this song is "In the Big Red Car we like to ride. Through the rainbow and the countryside". We saw the rainbow and the countryside that day. And he was riding in his Big Red Car through them. Now he rides in the Big Red Car in the Big Blue Skies!




Joey Bear Herman kept Jeremiah's favorite Blues Clues chair warm at his viewing. Jeremiah made Joey Bear at Build-A-Bear workshop right before his trip to New York for surgery.

Jeremiah's History

Jeremiah Louis Herman was born a healthy baby boy weighing in at 8lbs. 9.5oz. He was born on December 31st, 1999(the coolest birthday ever). He was a very healthy, happy baby. Many people would describe him as laid back and easy going which isn't a description often heard for a baby! He laughed alot, loved to play, and enjoyed all that life had to offer.

In December of 2001, Jeremiah did not feel well. He would complain whenever you put him in his highchair or carseat. He cried alot more often and didn't eat as much. We assumed it was because he was entering the "terrible two's" that we had always heard about. This "crankiness" seemed to come and go in waves. We made it through his 2nd birthday and it was a very happy Barney kind of a day. On January 11th, he went in to the pediatrician for his well baby checkup. His doctor examined him including pressing on his belly and then declared him a happy, healthy two year old. About a week later he started feeling really bad. He was tired all the time, not eating, and not playing. On Thursday, January 24th, we took him back to the pediatrician. She said his belly was hard and sent us for an xray. When the xray was read, we were told that Jeremiah was constipated. This began a long nightmare of enema's and we wound up in the E.R. on Friday night with Jeremiah in alot of pain and unable to walk because his belly hurt so bad! The ER Doc prescribed a laxative. Jeremiah had a very long, hard, and painful weekend full of Miralax and more enema's by his doctor's orders. By Monday night we were back at the ER and unable to reach his doctor. The ER tried a soap suds enema and when that didn't work they admitted him into the hospital. He had an NG tube pushed down his nose adding to his pain and enabling them to administer 6 liters of golitely to him (1 tsp would keep an adult in the bathroom for hours). The golitely did nothing for him and we had to fight our way into CHOA Scottish Rite to see a GI Doctor. We made it there by Tuesday early afternoon. The GI Doctor came and pushed on Jeremiah's belly. He said his liver was enlarged and he wanted to find out why. I was so relieved that he wasn't constipated (since we couldn't fix it), I had no idea what was coming. The next day, January 30th, 2002, the GI Doc came in with the results of the CT Scan he sent Jeremiah for. He said that Jeremiah had a tumor. I immediately thought "okay, a little surgery and the tumor is gone". My husband knew a little bit more about tumors and cancer and said the word "malignant?" and the doctor nodded his head Yes. He went on to explain that he thought it was Neuroblastoma but further testing would have to be done and an oncologist needed to review the case and discuss it with us.

Further testing did reveal that Jeremiah had stage IV Neuroblastoma. It also revealed that his main tumor was the size of a grapefruit and that he also had cancer in his head, behind his eyes, in between his lungs and chest, and in his bone marrow. We were told that he had a 40% chance to live the next 5 years. There was not testing done after the 5 year marker. By Friday night he had a central line in and was getting his chemo but it wasn't soon enough. The tumor had already grown to the size of a small watermelon. Jeremiah was having a lot of complications inlcuding getting a serious infection in his central line. His belly was huge and he was begining to swell everywhere. All the pressure was making it very difficult for Jeremiah to breathe. By Friday, February 15th, he was in very critical shape. We were sent down to the PICU for "observation". We were told later that night that he may die over the weekend.

Jeremiah was a fighter and dying was not part of his plans for that weekend. On Friday night they did have to put him on a ventilator. It was up and down for quite some time and they had him on drugs that kept him in a coma like state so he could get the rest he desperately needed. He slowly began to recover as the chemo did its job. He was suppose to receive his chemo every 3 weeks but when the time came around for his second round of chemo he was still on the ventilator. The decision was made to go ahead and administer the chemo while he was ventilated. Their really was no choice, he had to have the chemo or the tumor would grow again. He actually ended up receiving rounds 2, 3, and 4 of chemo while on a ventilator in the PICU. We had many ups and downs during this time. Many scares and he had I.V.'s in every vein of his legs, arms, and even in his head because he was not strong enough to handle the surgery to have another central line put in.

He did grow strong again and we started seeing our Jeremiah again (see his photo album with the CHOA PICU pictures, they were taken during this time. Also see Jeremiah's Photo's, he took them during this time). Jeremiah also learned how to assist the nurses with suctioning the ventilator tube. He learned how to "bag" himself which meant that while they unhooked the ventilator to suction, Jeremiah would squeeze the bag that gave him the oxygen. All his numbers on the ventilator showed that he should be able to come off of the ventilator but every time they tried to extubate him, he was not able to stay off and his breathing became very troubled again. With no explanation as to why he could not make it without the ventilator, we were left with no other choice but to have a tracheotomy done. In this procedure, an opening is cut into the neck and tubing in place there enabling him to breathe. The ventilator is hooked up to this tube. He was back in the coma like state for 3 days after the surgery to allow his neck to heal. In theory, he would still have to be hooked up to the ventilator because we never did figure out what his breathing problem was. But once he woke back up and they kept weaning the ventilator down, he kept doing good. So it was long before he was actually off of the ventilator!!

Once Jeremiah was off of the ventilator, we were all of a sudden seeing prospects of going home!!!! At this point in time it is April 2002!! We were given courses on how to care for his trach, suction, changes, the whole nine yards. We were given instructions on how to give him all of his meds. We were given instructions on how to do his feeding tube and administer his feeds. And we were given instuctions on how to care for his central line. YES THIS WAS VERY OVERWHELMING, but we were on our way home finally!!!!! When we arrived home, our sweet little baby boy said, "I'm home, I'm home"! He went back to the hemonc (cancer) floor for his 5th round of chemo. Everything went well and we went back home after the chemo was done (this is how the treatment protocol is suppose to go). He was back a week later with a fever. Typical but this did postpone our trip to New York for his surgery.

By the beginning of June, we were off to New York for surgery. Jeremiah was incredibly excited about the trip. He was so excited that it was our first few days in New York that he stated walking again. Ever since he had been in the PICU, he hadn't been able to walk because he had been laid up in bed way too long and he was very weak. But once we were in New York, he stated working really, really hard at walking and he was doing it!!! He was also very excited about meeting Dr. Mike, the man who was going to take the booboo out of his belly. Dr. Mike, a.k.a. Dr. LaQuaglia, is the best surgeon there is in the field of Neuroblastoma. We were given his name early on in Jeremiah's diagnosis and we were determined to get to him for Jeremiah's tumor resection. The chemo had shrunk the tumor enough that it was time for Dr. Mike to remove it. New York was an absolute blast!! Jeremiah enjoyed every bit of it and his surgery hardly even phased him. We did all that we could in New York including going to Toys R Us and FAO Schwartz and strolling through Central Park. On June 11th, he went in for a 9 hour surgery. Dr. LaQuaglia got every bit of the tumor!!! This was amazing because the tumor had been heavily involved with his right kidney and all over his inferior vena cava. Once the surgery was complete, Jeremiah took about a week to heal before he was already walking again!! He was just always so excited about being in New York that he just kept going! We hung around long enough to have his central line replaced for the fourth time and then we had to regretfully come back home.

July 2nd, one week after being home, he was admitted into CHOA Egelston for the next phase of his treatment protocol, autoglogus stem cell transplant. He would receive a very harsh round of chemo followed by a rescue transplant of his own clean stem cells. Once he recovered, he would do it all over again. This was the treatment protocol. The day he was admitted into Egelston he was jumping up and down on the bed singing and playing to the Wiggles video. It didn't take long for the chemo to wear him down. He became very sick and was soon unable to walk again. He was no longer eating but constantly throwing up. All of this was expected. His stem cell transplant went well. About a week after his stem cell transplant he began having bloody stools. It all went downhill from there. For weeks he bled massively. The doctors met every day trying to determine where the bleeding was coming from and why. They didn't want to do any procedures because he was way too weak for that. So we just kept praying that the bleeding would stop and it would be another miracle like when he was in the PICU at Scottish rite. But the bleeding didn't stop and he was getting worse. He started throwing up blood and his billirubin was getting high. The billirubin basically represented how well his liver was functioning. His right kidney had hardly any function left to it after the surgery but the left kidney was doing a good job of keeping up. Finally, we had no choice but to do an exploratory surgery to try to determine where the bleeding was coming from. The surgery was very high risk but without the surgery there would be no chance and he was still fighting. So we went ahead with the surgery. He made it through but id did not reveal where the bleeding was coming from. But the bleeding stopped! At this point in time his liver began shutting down though. His billirubin became incredibly high about a week later and the doctor told us that he had never had a patient survive with a billirubin that high. On August 24th, 2002, Jeremiah received his angel wings to the tune of his favorite Wiggles playing in the background. he was cancer free when he died.

Jeremiah will always be our firstborn child, our first true love, our first everything.

ALWAYS ON OUR MINDS, FOREVER IN OUR HEARTS, UNTIL WE MEET AGAIN...

((((((((((THIS MUCH))))))))))

Jeremiah's Favorites

I'll soon be re-designing Jeremiah's pages from the website. There are many things I really don't want to lose including his 'list' of favorites. So here they are ...








Favorite Movies/Shows:

-The Wiggles!!!!!
-Mighty Joe Young
-Barney-Shrek

-The Tigger Movie

-Joey (the Kangaroo)
-Jimmy Neutron
-Toy Story (1&2)

Favorite Characters:
-Bear in the Big Blue House

-Elmo
-Pooh & Tigger

-Spongebob Squarepants
-Blues Clues

-Bob the Builder



Favorite Foods:
-Mac & Cheese
-New York Hot Dogs
-Butter
-Bacon
-Goldfish
-Popcorn (with Daddy)
-Cheese
-Cheese from the can
-White powdered donuts

Favorite Songs:
-Barney's "I Love You"
-The Winnie the Pooh Song
-Eeyore's "Do your Ears hang low"

-The wiggles "Hot Potato"
-The wiggles "In the Big Red Car"
-The wiggles "Fruit Salad"



Favorite Animals:
-Elephant
-Kangaroo
-Gorilla/Monkey
-Donkey (Shrek)
-Fish

Other Favorites:

-His Sippy Cup!
-His Binky!!
-Courage & Rescue
-Joey Bear Herman

Jeremiah the two year old ...He loved life, every day, every minute. He loved to play and he would always find a way to have a good time.

Jeremiah's favorites...He loved to dance, especially to the Wiggles! He LOVED his cup and his binky. He always had both with him. Even when he was in the hospital and couldn't drink, he still held onto his empty sippy cup.

When Jeremiah was in the PICU on a ventilator @ Scottish Rite, he still managed to play, watch t.v., and bat his eyes at the nurses so thta they fell instanty in love with him (just ask Caroline)! It was during this time in the PICU that he became so obsessive about the Wiggles!

Jeremiah even had a girlfriend before he was diagnosed. Her name was Taylor and they were in in-home daycare together @ Mimi's. Taylor & Jeremiah did everything together! They only played with each other and never really interacted with the other kids.

Jeremiah also had 2 dogs; Kato (Siberian Husky) and Coconut (Spitz Mix). He adored his dogs although he often times confused their names. He also had a fish tank and he loved to go and look for the frogs in the tank.

Jeremiah also LOVED his Daddy's van! We actually got the van only 4 weeks before he was diagnosed. It was a big gatorade van on on the inside was a t.v. and plenty of room for Jeremiah to run around .. when we weren't in motion. He could also see out the windows which he loved. Whenever he would see his daddy's van, he would yell out "My daddy's van, My daddy's van!"

I miss you

I miss the looks on your face as you experienced different emotions. The joy, laughter, and happiness that filled me to see your face when you were surprised, happy, curious, intrigued, and being just plain silly.

I miss your smiling eyes, the way my heart would burst with happiness every time your face lit up and the way your laugh could echo through my heart. The way your smile would brighten a room and infect everyone around you.

I miss the sound of your voice wehn you called my name...mommy. The warmth that always filled me when you would blow me a kiss after I told you I loved you and the sweetness in your voice when you told me you loved me "this much".

I miss the feel of your hand in my hand, your little fingers wrapped around mine. The wholeness I felt knowing you were my purpose for being when I was able to rock you to sleep with my arms wrapped around you as my lips rested on top of your warm fuzzy head.

I miss the way you would tilt your head to the side whenever you were answering a question and your curiosity every time you asked a question. The way you loved, accepted, and talked about your treatments, the medicine, and the boo-boo that Dr. Mike took out of your belly.

I miss seeing your night light on in your room in the middle of the night, looking in on you sound asleep with your legs crossed and your arm over your head.

I miss calling Daddy from work and hearing you playing in the background, when Daddy would give you the phone so I could tell you "I love you" and you would blow me a kiss. Then I would ask you "how much does mommy love you?" and you would say "this much"!I miss seeing you sitting in your blues clues chair in front of your t.v. watching The Wiggles or Mighty Joe Young for the millionth time telling mommy and daddy what was going to happen next.

I miss seeing you sitting in your high chair playing with your mac & cheese. The way you would tell momy and daddy to cook and we would make you a hot dog, corn, mashed potatos. a slice of cheese, and anything else we thought you might eat.I miss wrapping my arms around you in the mornings to lift you out of bed and hugging you so tight at night when we would have our family hug after we said our goodnight to God.

I MISS MY JEREMIAH!

Amber Herman
September 2002

Today is Your Birthday

Today is your birthday, as it will always be,But instead of another year older,Forever two and a half you will be.Every year I will celebrate this day as your birthday,and not the Eve of New Year's Day.But it does not change the fact,that today you are still two and a half.So it will be that in ten years and twenty,I will celebrate my two and a half year old's birthday,Because today is your birthday, as it will always be.

Amber Herman
December 31, 2002

"Song of Saints"

Tell the loved ones we are safe now. Tell them we have no more pain. Do not hurry heaven's journey, but do not fear it just the same. All will go through times of grieving, every tear must be released; but live a tribute to our memory, heal your pain with holy peace. For our faith was never futile as we trusted in the Lord, every word now has been proven: all we knew and even more. Every promise christ has given through our voyage has proven true. Christ prepared us for a mansion and a mansion waits for you. So do not faintfrom earthly challenge, hold your faith and live it strong. Years on earth are but a moment, days in heaven go on and on.

"Song of Saints"

"Do Not Stand at My Grave and Weep"

Do not stand at my grave and weep;

I am not there, I do not sleep.

I am a thousand winds that blow.

I am the diamond glints on snow.

I am the sunlight on ripened grain.

I am the gentle autumn's rain.

When you awaken in the morning's hush,

I am the swift uplifting rush of quietbirds in circled flight.

I am the soft stars that shine at night.

Do not stand at my grave and cry,

I am not there, I did not die.

author unknown

"Remembering"

Go ahead and mention my child,

the one that died, you know.

Don't worry about hurting me further,

The depth of my pain doesn't show.

Don't worry about making me cry,

I'm already crying on the inside.

Help me to heal by releasing the tears that I try to hide.

I'm hurt when you just keep silent,

Pretending he didn't exist.

I'd rather you mention my child,

knowing that he has been missed.

You asked me how I was doing.

I say "pretty good" or "fine".

But healing is something ongoing.

I feel it will take a lifetime.

By Elizabeth Dent

"I want to Play and Soar and Dream"

I want to play and soar and dream.
Fly above the fields until I am free.
No pain, no sorrow and no fear,
can touch me now that I am here.
Breathe in the breeze and feel the sun,
Across my face, I run and run!!!
I play and laugh among the trees,
Alive! Alive! I breathe! I breathe!
With legs so strong, I run so fast.
The world just smiles as I go past.
Sweet laughter bubbles up inside,
For freedom long denied, denied.
No tears, no pain, remembered here.
I've been released from all my fears,
To run and laugh until the day
When all bad things have passed away.

by Brenda Penepent

"If Given the Choice"

How many people can honestly say they know when the best years of their life were?

Parents who have lost a child can. I can. Whether it was one month, 2 years, 10 years, or 30. Those years were the best and they will never be like that again. The best years are gone forever, left to be remembered every waking day.

My best years were 2000 and 2001. My son, Jeremiah, was born on December 31st, 1999. Jeremiah was diagnosed with cancer on January 30th, 2002 and died August 24th, 2002. The best years of my life were the years I felt his love in my life every day before he knew the pain of fighting a losing battle for his life. The best years were the years before I knew the gut wrenching pain of losing him. The best years were the years that I still could see his future, could see him playing a baseball game, riding a bicycle, driving a car, graduating high school and then college, getting married, and having kids of his own. The best years were when I took for granted the joy of holding him in my arms and rocking him to sleep, to give him a kiss and tell him how much I love him, to walk into the room and watch his face light up just because he was so happy to see me.

Although I have been blessed with a second son, Jacob, whom I take nothing for granted and treasure every moment I have with him. I still spend all those moments knowing Jeremiah is not there being Jacob's big brother, helping mommy change Jacob's diaper, showing Jacob how to open presents on Christmas morning, teaching Jacob how to spit after he brushes his teeth, and Jeremiah is not there every night for story time, prayer time, and the "family hug". Each day is filled with memories of his smile, his laughter, the feel of his hand in mine, and the sound of his voice when he called "mommy".

If I were given the choice to keep those two best years and spend the rest of my life feeling that my life is not complete or to lose those two best years and not know this pain in my heart, which would I choose?

The choice is easy. My heart may ache every day for the son I lost but his love remains in my heart. I feel his love, light, and laughter every day in my life through his brother, through his father, and coming straight down from him when he checks in on us. And I know that when my time comes, he will be there with open arms waiting for me and we will be together again!

So given the choice, I would do it all over again to have those wonderful years with my Jeremiah and to have him waiting for me on the other side.

Amber Herman
November 2002

"My Angel, My Jeremiah"

My Angel, My Jeremiah,
When I look to the sky at night,
I find your star's shining light,
When I close my eyes,
I feel your smile so bright,
And when the morning sun rises,
your love embraces my heart so tight.
In a sky so full of clouds,
I know you're peeking down;
As I imagine you at play,
it's your laughter I feel that lets me know you're still here.
May I always know;
when I look to the sky, I can find My Angel, My Jeremiah.

Amber Herman
December 2002

"I Need You to Know"

I need you to know that you were the light of our lives,
that you brought more joy and happiness to us in two and half years than a lifetime had brought us before.
I need you to know how proud we are of you,
how your strength, courage, and determination strengthened mommy and daddy everday.
I need you to know how much we wanted to make all your hurts go away,
how every hurt you felt made our hearts ache for you.
I need you to know that every smile you smiled made our hearts soar with happiness and love.
I need you to know that we miss you desperately but we are comforted by memories of your smiling face and stories of all the ways you made us laugh.
I need you to know that every time we hold your little brother that we are holding you too,that with every kiss, handhold, hug and "I love you" that we say to him, we also say to you.
I need you to know that every "family hug" we share from this day forward, in our hearts, you will be the center of that hug.
I need you to know that you will always be our first child, our first true love, our first everything and as we introduce your little brother to all of his firsts', you will be there right beside us leading the way.
I need you to know that mommy and daddy's love knows no boundaries, that our love still surrounds you in heaven as our arms once surrounded you on earth.
I need you to know that we will love you forever and always "THIS MUCH" and that one day God will call for us and we will be together again for all of eternity.

Amber Herman
August 31,2002

ReDesigned Webpage & New Blogger

It's that time of year, Jeremiah's time. I've been talking about deleting the geocities website for a while but haven't had the heart to do it. Meanwhile, I've had all these crazy accounts on Myspace, Facebook, Twitter, etc. etc. Recently, our access at work has been cut off to these sites, understandably so. However, I've felt quite out of the loop. Then it occurred to me that I could re-design Jeremiah's website & link to all the things I want from there. For example, on Myspace I keep a Blog mostly about my back and the different things I'm trying so I can avoid surgery. This is why I set up the account with Blogger.



Anyways, who knows what all I may or may not be blogging about in the future. It seems like it will be a GREAT place to also update about the kids and all there antics!! You can really get an inside look on the Herman Clan this way! Like Benny pooping on the floor twice this past week! Oh yes, lots of fun!



Meanwhile, I'm going to keep working on setting everything up and I'll be blogging later!

Ghine aka. Amber