Monday, July 31, 2006

Hello Everyone! I'm awake! I kid you not--I slept for 24 hours yesterday!! I had a nice shower today, had some lunch with my mom, and got back here to the old computer. I just checked donations and am VERY PROUD & EXCITED to share the grand total of $1285 going to CNCF! We are #15 out of $285 bloggers in terms of most funds raised!! I believe they are STILL accepting donations today, but today is the last day for you to pledge! Please Sponsor Me! if you haven't already! These kids and the kids of the future deserve it!

I'm getting ready to send an email out to all of the participants as well as the sponsors, so be looking for it! I would like to list the wonderful sponsors on here so that EVERYONE can honor them!!!! They are: Anonymous x 12 (I wish I knew who you are!!), Sarah Hersey, Kara Day, Stephanie Kent, Michael Kent, Caryn S, Natalie, Angela Veldon (mother of Angel Naomi), Barb Cooper (mother of fighter Daniel), Charlene Mersburgh (mother of fighter Ruth), Keely Knoche, Kailey, Beth Whyte, Lori Kilburn, Cindy (fighter Eden's Aunt), Michael Shaw (father of fighter Abbie), Jon Phillips, Jaime, Sarah, Alexandra Thelin, Faye Whyte (mother of fighter Georgia), Clive, Tamra Cave, Mary Matthews, Jennifer Cooley, In honor of Fighter Razak, In honor of Fighter Christi & in memory of Angel Jack!!!! Please lift all of these wonderful people up!! They are simply AMAZING and we couldn't have done this without each and every one of them!!!

Well, I'm off to email everyone individually, so that may take some time! Love to all! Nikki

Sunday, July 30, 2006

[post#48 9 AM]

Final Post [Post # 47 8:30 AM]

Sunflowers by Christi Thomas

**Together, we raised $1095 for CNCF! I can’t thank you all enough!! More good news: You can STILL Sponsor Me! for 48 hours AFTER the Blogathon is over! Send this link to your friends, neighbors, garbage man, etc! We can still raise more for CNCF in honor of our Warriors! (Notice how I'm taking ownership of them now!)**

Sean and his siblings, sent to me overnight by his mom!

I'd really like to thank all the families, sponsors, friends who kept me awake, etc for helping make this experience memorable. I met A TON of amazing people online in the past 24 hours that I would never had met otherwise. What a great time! You'll definitely be hearing from me next year everyone!!!! Please feel free to leave as many happy comments in the posts as you'd like! I will definitely be reading when I wake up!!!!!

Before I head off to la-la land, I'd like to post the follwing items.

The following is my gift to all of the mothers, fathers, siblings, aunts, uncles, cousins, and friends of these beautiful children.

Christi holding a butterfly yesterday!


By Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. Did you ever wonder how mothers of children with life threatening illnesses are chosen?

Somehow, I visualize God hovering over Earth selecting His instruments for propagation 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, patron saint Gerard."

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 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. She has that feeling of self and independence that is so rare and so 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." 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 a woman whom 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." She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side."

"And what about her patron Saint?" asks the angel. His pen poised in mid-air. God smiles, "A mirror will suffice."

And this is something for the parents, friends, family of our Angels, as given to me by Angela, mother of Angel Naomi.

You can shed tears that she is gone
Or you can smile because she has lived.

You can close your eyes and pray that she'll come back,
Or you can open your eyes and see all that she has left.

Your heart can be empty because you can't see her
Or you can be full of love you shared.

You can turn your back on tomorrow because of yesterday
Or you can be happy for tomorrow because of yesterday.

You can remember her only that she is gone
Or you can cherish her memory and let it live on.

You can cry and close your mind, be empty and turn your back
Or you can do what she'd want, smile, open your eyes, love
and go on.

by Vanessa Smith

Angel by Christi Thomas

**Thank you for allowing me into your lives, if only for a short time. Thank you Sarah for helping me!!

Love, Nikki
Kylie The Super Fighter! Post #46 8 AM

[the home stretch]

The following information provided by Kylie’s family and Kylie’s website:
On Nov 14, 2002, at age 6, Kylie was dignosed with stage IV Neuroblastoma, an aggressive childhood cancer. She had also tested positive for Neuroblastoma in her bone marrow...

Since dignosis,she's been through 30 rounds of chemotherapy, a 3 hour surgery to remove the main tumor, right adrenal gland and 4% of her right kidney, 36 treatments of external radiation to various affected areas,1 Broviak line,(currently a mediport, since sept.2003),
a stem cell harvest(Feb.2003), stem cell transplant(July 2003), 10 rounds of a drug called Acutane, a very high number of shots and pokes, 3 fresh frozen plasma, well over 100 platelet and about 80 blood transfusions, including countless scans and other tests.

She was said to be in remission July of 2003, her bone marrow was cleared.(Praise God!)

In March of 2004,she relapsed.

In July of 2004, Kylie went to Philladelphia, PA for treatment called MIBG therapy. This treatment involved infusing her with a high dose of internal radiation, and being in isolation for at least 5 days. She was declared.

Her disease showed up again in March of 2005, so Kylie underwent a 2nd round of MIBG therapy in Philadelphia, with a stem cell rescue. She was declared NED again, so, while still being seen at the Cleveland Clinic, Kylie was enrolled at NIH(National Institute of Health)in Bethesda, Maryland(June 2005).to participate in a study for ABT-751 an oral chemo-type pill (the purpose was to keep her status of NED for as long as possible, because in essence her cancer could and would break through again). Kylie had just completed her 2nd round (July 2005) and relapsed. The doctors then tried a different chemo combo.

In August 2005, Kylie became a big sister to a little sister. The same month, Kylie’s family found that the chemo they were trying, was not working and Kylie’s cancer was , in fact, progressing.

So in Sept.2005, the family traveled to Houston, Texas for an experimental treatment involving Kylie’s very own lymphosites and antibodies.

October of 2005, Kylie became symptomatic again. To alleviate pain and control what they could, Kylie again started more chemo. Her bone marrow, so far, has remained negative(clear since July of 2003.Praise God!)....

DEC.2006 Kylie started a chemo combo known as Avastin/irinotican. She also received a new mediport.

In Feb 2006 Kylie was hospitalized for 9 days for severe pain and the inability to walk. She finished up her Avastin/irino combo and had radiation done to her left hip and right ankle. A wheelchair was ordered.

March 2006 Kylie CAN walk but only short distances.

June 2006 There are no options currently available, Kylie is now on Hospice/home care. Not without hope.

Kylie has never let this cancer get her down; she’s a real fighter, She loves to sing, (she loves Hillary Duff and Christian music), She has 2 cats, some fish, and a puppy that she adores. She's your typical kid that wants to be a Veterinarian someday.

She did get a Make A Wish in October of 2003. She took her friend Kristen with her to Disney World in Orlando, Florida.

Her current dream is to visit all 50 states. Something that she virtually accomplished through postcards! (thanks so much to Western Reserve , friends and family).

My thoughts on the beautiful Kylie: My thoughts and prayers are with her and her beautiful family everyday. Please send yours as well during this difficult time in her illness. Kylie and her family are an awesome example of the kind of person I want to be!!! Much love! Please visit Kylie here:
Abbie the Warrior [Post #45 7:30 AM] [I am soooooo tired!]

Our daughter Abbie has been fighting Neuroblastoma here in the UK since Dec 2002. She is now 5 and still fighting. Since the end of May she has gone form being as healthy as ever to very poorly and unable to walk within days, and recovered, only to be knocked down again by the pain of this terrible disease.

Abbie really enjoyed her 'Make a wish' back in June at Nutfield Priory. She came down with a temperature for a few hours on the Sunday at the hotel but was well again in the evening when the butler served her princess menu. She started radiotherapy to her hip her on the Monday and became quite unwell and stopped walking again. The radiotherapy was completed on the Friday and Abbie and Jamie attended the Queens birthday party on the Sunday with Mike, Aunty Susie and myself. The following week Abbie started pallitive oral chemotherapy. She takes Etoposide and Cyclophosmide for three days every week for three weeks and then has a week off. Fortunately Abbie has always responded well to chemo and a few days after starting the chemo became well again and began to walk again. The side effects seem pretty minimal and the blood transfusions have become less frequent - sometimes the gap is up to two weeks but Abbie does seem to need platelets weekly. In the first week of July Abbie was involved in two school concerts and sports day where she won a race in a high speed buggy.

The second and third week in July Abbie was on great form and we completely weaned her off morphine and calpol. We went on holiday to Hastings for a week which she seemed to really enjoy and went swimming daily. The following week she managed three days in school holiday club with Jamie.

The oral chemo therapy cycle stopped for a week and after seeing Abbie's consultant at the Marsden we decided to delay chemo for a second further week as Abbie was neutropenic and her blood counts needed to recover. We were also going on holiday to the New Forest with all her cousins. The delay to the chemo meant Abbie became very poorly again very quickly - all the signs of neuroblastoma came back very quickly - temperatures, night sweats, vomiting, excessive sleeping, pain and general misery. She also developed a dark circle around her right eye which is a neuroblastoma sign. Very quickly we had to put her back on morphine and on Tuesday last week I had to take her to the oncology ward at Southampton hospital where she had a platelet transfusion. The following day I was really worried about her. With hindsight I now realise she was morphined up to the eyeballs as I had just started her on higher dose slow release morphine, but I really thought at that point she only had a few days left. I managed to wake her and took her home on Wednesday morning. Thankfully her blood counts had recovered enough for her to start back on the oral chemotherapy. Again it has worked miracles. Four days later and we are now gradually reducing her morphine again, she is awake most of the day, has started eating again (although only small morcels of food - which is an improvement on no food at all), and is enjoying life again. Considering she has not eaten anything much for about four weeks she is not as skinny as you might think. I blame this on the slow metabollic rates of her parents!

Nikki’s Notes: Abbie’s parents sound like such wonderful people! Since the oral chemo has caused her hair to fall out again, the “hair fairy” came and gave her a princess alarm clock overnight! What a wonderful thing to do!
As Abbie is not doing very well right now, please keep her in your thoughts and prayers! Abbie's website is
The Dashing Aussie, Dylan Hartung! [Post #44 7 AM]

Melissa (Dylan’s Mom) On Dylan:

Dylan is a 7-year-old Australian boy who was diagnosed with Stage IV Neuroblastoma on 26th July 2004 when he was 5 years old. Dylan's tumor started on the left adrenal gland and had wrapped itself around both his left and right renal arteries and around several major blood vessels. So far, Dylan has received 12 rounds of intense Chemotherapy, but even though there has been some improvement in his condition, the Neuroblastoma cells still remain in his bones. Dylan was classed as refractory in December 2004, meaning he no longer responded to the regular Neuroblastoma protocols of treatment. As Dylan still has Neuroblastoma evident in his bones, the doctors in Australia would not perform surgery or harvest his stem cells to continue treatment regimes. We were told that Dylan has 2 – 12 months to live and there was little more that could be done for Dylan. Dylan's fight for survival has led us to America, where they have many treatments that are not currently available in Australia, one in particular is called 3F8 Monoclonal antibodies. Dylan had his stem cells successfully harvested onthe 7th and 8th February 2005 and had his main abdominal tumor entirely removed on the 9th February 2005 by a highly skilled surgeon who is an expert in the field of Neuroblastoma, at MSKCC in New York. Without this surgery, Dylan would not be alive today. Dylan has now commenced treatment to tackle the Neuroblastoma still present in his bones, including a Phase I Clinical Trial Protocol 05-074 (Cetuximab and Irinotecan) and a Phase II Clinical Trial Protocol 04-148A (131 I-MIBG with Arsenic Trioxide). ACampaign was started in December 2004, by a wonderful team of dedicated people, to raise $500,000 Australian dollars, for surgery and initial treatment, and on 26th January 2005 (Australia Day!) exactly 6 months after diagnosis, we arrived in New York City!

Dylan loves Playstation 2, Gameboy, Yu-Gi-Oh cards and is a huge fan of the actress Angelina Jolie. Actually that’s an understatement, he adores Angelina so much that he has made her his Ultimate chicky babe and collects pictures of her! Dylan loves all types of cars, racing cars, sports cars and Mustangs are his favorite.Dylan collects precious stones and Crystals and enjoys art lessons. Dylan likes Chinese food and his favorite color is blue. He also enjoys doing puzzles and loves listening to his Ipod music! Dylan also enjoys a game of “Sorry”, “CandyLand” and “Monopoly” in between playing a card game of "UNO". Dylan absolutely loves his big brother Cain who is 11 years old and Dylan also loves animals. Dylan has an amazing personality and anyone who spends five minutes with him, is totally in love with him. He has a great sense of humor and gets many adults in fits of laughter whenever they engage in conversation with him. Even people that don’t know him strike up a relationship with him that continues through letters and phone calls from the other side of the world. Dylan has enchanting eyes. They are so expressive and you can tell his emotion just by looking at them. Dylan misses his dad, Nana (Grandma) and brother terribly while he continues his fight against cancer in New York City, but he knows why we need to be in America and he makes the most of everyday. When Dylan grows up, he wants to be a chef and cook pancakes for his brother Cain. The things Dylan says he misses the most about Australia (apart from family & friends) is Chinese from a particular store, going to Frankston on the bus with Nana, Red Rooster cheesy nuggets, Dim Sims from the fish n chip shop, going to football and playing with his best friend Jordan.

Throughout all of Dylan’s treatment, he has never complained. We have always beenhonest with Dylan and he has been a part of all our decision making. The courage that this little boy has is incredible, he never ceases to amaze me.
Love & Hope
Melissa and Dylan xoxo

Nikki's Noties: Please visit Dylan’s website!
Finally! A "free" post for Nikki. I think I'm going to need a 1/ hour nap!!! Thank you all!!!! $1047!!!
this is what i want to be doing!

Markeira is now NED! [Post #42 6 AM] ["Only" 2 more hours to go!]

Markeira Smith was born on May 16, 2002. She was diagnosed with Stage 4 Neuroblastoma on 9/7/04 at St Jude Children's Research Hospital in Memphis, TN.

She has received high doses of chemotherapy to shrink the tumor, and she had surgery to remove the tumor on 12/6/04. She received a bone marrow transplant in which she received her own stem cells on 2/9/05. Additionally, she received radiation and 6 months of oral chemo. She is now in remission! Praise God!!

Nikki's Notes: Markeira had a cat scan on the 27th and everything looks great! She is having some problems with her bladder which may be related to the radiation she received to fight her cancer. Please keep her in your thoughts & prayers! You can visit her beautiful Dora site here:


Hello, it's Sarah again =)

Spirituality is a very personal thing for every person, and it seems like for many who are going through struggles with cancer that spirituality plays a very large role in their strength.

I'm going to ask that those of you who pray, meditate, visualize, to please do what you do to ask the divine for help for all these kids and their families battling neuroblastoma. Ask God by whatever name or whichever saint you feel is right to be with them and bring them peace and comfort.

Do what feels right in your heart.

This will be my last post for the night. I unfortunately can't pull all nighters because I have a seizure disorder, but I want to thank Nikki for letting me help her with this. Thank you to everyone who has read, supported and sponsored us, and a HUGE thank you to Nikki for making this go all the way to 9:00 this morning. Just 3 1/2 more hours!
New Fighter Ruth!! [Post #40 5 AM]

Our daughter Ruth was Dx with Stage IV Neuroblastoma
3/2006. We are just through chemo and starting to get ready for the
autologus stem cell transplant on Labor Day. Y

Ruth's mom wants to get the word out about NB and am very burdened to
help as soon as Ruth is through her treatment.

Nikki's Notes: Ruth has a WONDERFUL family from the looks of her website. Let's all send our hopes and prayers to Ruth and her family during the first months of illness. It has to be the worst news a parent can get. Send Ruth your best wishes here: at her website
Another kitty post! Here are Nikki & Sarah at their prospective computers:




Hello, Sarah again =)

Did you know that people battling with cancer can receive massage therapy?

Skya had posted in a comment that it was time to raise awareness because many cancer patients who could benefit from massage therapy don't know they can even receive it. There are only rare cases where massage is not advisable.

My Aunt Diane has been battling cancer throughout her body for over a decade. She has had several of her lymph nodes removed, and relies on massage to keep her lymphatic system flowing, especially in her left arm, where all of her lymph nodes were removed. Massage can also help in the battle against the effects of illness and treatments: Fatigue, soreness, insomnia, nausea, swelling, and even minor depression. The power of touch alone is so healing, (it's even been medically proven) and for those who constantly find themselves with tubes and syringes, the feel of human contact is soothing, comforting and healing.

And it's good for caretakers as well! Don't forget yourselves!

Here's some fast facts based on FAQs with links to more information:

Note: Before you begin with this or any other treatment, please remember that it is complimentary medicine, meant to enhance its effectiveness and/or your quality of life, not to take the place of your current treatment. Always speak to your oncologist and/or primary care physician before beginning this or any other treatment, and remember, especially in cases like these, to find a massage therapist who is well versed in massage therapy with oncology and who will work closely with your oncologist to keep track of your status. It's just a safety thing =)

Can Massage Spread Cancer?

~No. Absolutely not.
~This myth came about because it was thought that massage would promote metastasis (how cancer spreads from one part of the body to the other) since cancerous cells can travel through blood and lymph channels.
~We now know that regular movement and living promote circulation even more than a massage does
~By releiving some of the energy draining side effects the body has to go through, the body can use the energy it has to fight. If you feel better, you fight better.
~Massage helps enhance the immune system, which is compromised during cancer.
~Massage therapy is used in many top hospitals throughout the US

Note: The tumor itself should never be massaged

Bottom line: The benefits far outweigh the risks

Can treatments interfere with massage or vice versa?

~Radiation therapy may leave burns on the skin, leaving sensitive areas which can not be massaged
~Chemotherapy may decreace platelet counts, which can lead to easy bruising

Bottom line: Choose a massage therapist who is experienced in massage therapy for those battling cancer. They will know about how treatments can interfere with massage and will be able to adapt massage and know if and when it is appropriate to refrain from massage therapy. Make sure that they are in constant contact with moth you and your oncologist, and as with any doctor, if you're anything less than impressed, find a new one!

Links to more info and some sources:

~American Cancer Society This site also has information about other forms of complimentary medicine that jive well with cancer treatment.
~Aurora Health Care
~Tracy Walton
~University of California, San Diego
Anna Remains NED for 3 ½ years! [Post #38 4 AM]

Anna in her mom’s words:

Anna was 9 weeks old and had a cough. The doctor ordered an x-ray to be sure she didn't have pneumonia. Little did we know how much better pneumonia would've been. Three days later, we were in the PICU awaiting surgery. The doctors said it was Neuroblastoma, a disease we'd never heard of before. The tumor was growing out of her spine and pressing on her main bronchus, so it had to be removed right away. Being under one year old, Anna was one of the more fortunate in that her form of cancer was considered low-risk. Nearly all of the tumor was removed and her scans have been clear ever since. Though Anna has some challenges, she is doing well and has remained Cancer-free for 3 1/2 years. We are very lucky to have caught it so early. We send heartfelt thanks to all those that work so hard!

Sharon, Anna’s Mom

Nikki's Notes: Someone was definitely watching out for Anna. It was a miracle that she was diagnosed so early! She has been NED ever since! What an amazing gift to be given! Please use Anna as a source of inspiration! I know she's an inspiration to me!!!
[3:30 AM]

Hiya! It's Sarah again!

Only 5 1/2 hours to go!

Nikki is beginning to get sleepy, and I'm heavily caffinated.

But it's worth it!

Here is the Sarah Kitty:

And here is the Nikki Kitty:

Thank you again, everyone, for reading and supporting and sponsoring. It can't even be said how important it is to know that the stories and information (and even silly kitten posts) are getting out there.

Because knowlege is hope.
Angel Michael [Post #36 3 AM] Only 6 more hours to go!

This is MICHAEL. Diagnosed 1/19/99 Neuroblastoma Stage 4, fought for almost 7 years.
Michael loved baseball. New York Yankees are the fave. He played baseball and indoor floor hockey. SURVIVOR was his favorite show. Dave Matthews, Creed and Green day
Despite the harsh treatment he endured he was always happy. He loved Chicken Francaise and Cesar Salad. Had the smile that would catch you like a magnet, like that of Christi.
Fishing was always a favorite past time. He was just a great kid who is missed dearly.

Nikki’s Notes: Please keep Michael’s family in your hearts and prayers! Michael has a webpage if you'd like to read further back.

And . . . for some amusement for my adoring fans, hehe, here are some more recital photos of young nikki.

this is what i will feel like soon!


Hello, Sarah again =)

We've skyrocketed over the $1,000 dollar mark! This is awesome!

We're at $1,047 exactly. Let's try to get it up to $1,100 and go from there. Only $53 more to go to hit that mark. We can do this!

Thank you to everyone who's been there with us (and especially with Nikki) through all of this.
OMG!!!!!! I AM SPEECHLESS! We have reached $1,047.00!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Georgia Whyte Fought & Won! [Post #34 2 AM]

Georgia was diagnosed with Stage IIB Neuroblastoma in January, 2006 at the age of 18 months. Her adrenal tumor was found and removed early because she has a congenital kidney defect that was being monitored closely. For this we are eternally grateful.
Right now, she is an active, happy, 'terrible two-ster'. As of her six-month check in July, she is tumor-free.

Since her diagnosis and the resulting flurry of tests, scans, biopsies and visits to the Children's Hospital of Eastern Ontario, two hours away, my husband and I have learned one very important thing. You need to have fun with your children every day.
We've decided that the lawn might grow a bit longer, the dust bunnies will keep and that black thing in the back of the fridge can eat the green thing tomorrow, because we have children to celebrate and experience and laugh with.

Georgia's nine-year-old sister Sydney has been a source of inspiration and positive energy for us all through this time. She decided that she wanted to find a cure for her baby sister, so she started selling my handmade beaded bracelets to raise funds for Neuroblastoma research. To date, Sydney has raised over $10,000 for The James Fund.

Nikki’s Notes: Georgia and her mother have been very encouraging!! I’m SUPER excited that Georgia is currently NED!! The thing that stands out most from what Faye, Georgia’s mom, wrote, is that it’s more important to spend time with your family and friends than worrying about all the clutter in our houses and our lives. Life and quality of life are the most precious things we have! I’m taking that lesson away from this experience today! Much love to all the fighters and all the people who love them!

You can follow Georgia and Sydney's story here:


Hello, it's Sarah again. I'm hoping this post will bring more awareness to the nature of Neuroblastoma, the form of cancer Nikki and I are Blogathoning for. There are, as it goes with medical maladies, a lot of unfamiliar terms, and I hope this post will give everyone a clearer picture.

What Is Neuroblastoma?

Neuroblastoma is a form of cancer that occurs in infants and young children. It is rarely found in children older than 10 years. The cells of this cancer usually resemble very primitive developing nerve cells found in an embryo or fetus. (The term neuro indicates "nerves," while blastoma refers to a cancer that affects immature or developing cells).

Neurons (nerve cells) are the main component of the brain and spinal cord and of the nerves that connect them to the rest of the body. These cells are essential for thinking, sensation, and movement. There is a part of the nervous system that we are rarely aware of, called the autonomic nervous system, which controls involuntary body functions such as heart rate, blood pressure, and digestion. The sympathetic nervous system is a part of the autonomic nervous system. It includes:

* nerve fibers that run alongside the spinal cord
* clusters of nerve cells called ganglia (plural of ganglion) at certain points along the path of the nerve fibers
* nerve-like cells found in the medulla (center) of the adrenal glands. The adrenals are triangular-shaped glands located above the kidneys. The hormone adrenaline comes from the cells in the adrenal gland.

Most neuroblastomas (about two thirds) start in the abdomen. About one third of neuroblastomas start in the adrenal glands and another third begin in the sympathetic nervous system ganglia of the abdomen. The rest start in sympathetic ganglia of the chest or neck or in the pelvis. Some can start in the spinal cord. Rarely, a neuroblastoma may have spread so extensively by the time it is found that doctors are unable to determine exactly where it started.

Not all childhood autonomic nervous system tumors are malignant (cancerous). There is a benign tumor called ganglioneuroma which is composed of mature ganglion and nerve sheaths that do not continue to grow.

Ganglioneuroblastoma is a tumor that has both malignant and benign parts. It contains neuroblasts (immature nerve cells) that can grow and spread abnormally, as well as areas of benign tissue that are similar to ganglioneuroma.

Ganglioneuromas are usually removed by surgery and carefully examined under a microscope to be certain they do not have areas of ganglioneuroblastoma. If the final diagnosis is ganglioneuroma, no additional treatment is needed. In contrast, ganglioneuroblastomas are treated the same as neuroblastomas (see "How Is Neuroblastoma Treated?").

Neuroblastoma is a unique cancer in many ways. It is one of the few cancers in children that release hormones that can cause strange changes in the body, such as constant diarrhea. It can also cause changes in the some functions of the brain, such as opsoclonus (rotary movements of the eyes) and myoclonus (spastic jerks of the muscles).

These changes are called paraneoplastic syndromes.

The tumor itself can behave strangely. Sometimes the cells die without any cause and the tumor disappears. This is part of a normal process known as programmed cell death (apoptosis), the normal process that occurs when cells die. This tumor disappearance is much more common in very young infants than in older children. Another behavior that is unusual for childhood tumors is that the cells sometimes mature spontaneously to normal ganglion cells and stop dividing. This causes the tumor to become a ganglioneuroma, which is benign (non-cancerous).

Thanks to for the information.
and update from Naomi's play specialist!!

Hi I have just read you blog and the story of Naomi.My name is Claire and I am the play specialist that Angela was talking about. I now live in New Zealand and am unable to work as a play specialist as they don't recognise my qualifications..very frustrating. I just wanted to say thanks for putting Naomi's story on your site, it was very moving reading it. I just adored Naomi, she made my job so much easier and a lot of fun, as did her wonderful family, they are a very special family. Naomi was a wonderful little girl, always ready with a smile and a great little attitude!! I know I will never forget her and feel that she is often with me.I feel very privelged to have known her and all the other children that I cared for.

I hope that you raised the money you wanted to, well done for all your hard work.

Kind regards

Claire Montier
[I'm starting to wind down. I am VERY grateful to Sarah for taking some of the 1/2 hour posts for me, as the party is STILL in full swing downstairs!! We are STILL $53 short of the $1000 mark! Even if you can only spare $1, please Sponsor Me!]

Angel Naomi: written by her mother [Post #32 1 AMish]

Our little girl Naomi was diagnosed with Neuroblastoma in May 2002 when she was two and a half. It was all very sudden. Naomi was admitted to the children’s ward. The first week was spent having lots of tests including scans. She also needed to have a Hickman line (central line) put in, as well as an NG tube to build up her weight. From then on and throughout the 20 months that she was ill, Naomi had a night feed, which would drip a thick nutritious liquid directly into her stomach.

After Naomi was diagnosed, she underwent six courses of chemotherapy during that year.

Although Naomi’s main hospital was the Marsden, we were told that her shared care hospital would be Maidstone. It was explained to us that if Naomi ever had a temperature, then we should take her straight to Maidstone. We got to know Maidstone Hospital very well during that first year, as Naomi had an infection after every one of her chemo treatments. And, we would usually spend at least a week on the ward each time.

It was at Maidstone that Naomi met the person who would become her very best friend in the whole world, Claire the play specialist. Claire made those visits to Maidstone so much easier. While on the ward at Maidstone, Naomi was reverse barrier nursed, which meant she was expected to stay in her room the entire time, which was quite difficult to achieve! However, Claire made sure that there were times when the play room was shut to other children and Naomi was free to play in there. In addition, Claire would come and play with Naomi in our room. Naomi became the queen of the Nintendo console and the world’s expert on Disney videos!

Throughout her illness, Naomi was nearly always bright and happy, which made the whole experience so much easier for everyone. We also received the most wonderful care throughout.

Naomi had a nine-hour operation at St George’s Hospital in December 2002, which was regarded as a success.

In January 2003, the medical staff at the Marsden seemed happy with Naomi’s progress and she was taken off treatment. She then spent two wonderful months at home being a happy and normal three-year-old. However, by March she was becoming tired again and seemed to be showing some of the symptoms she had exhibited when she was initially diagnosed - such as an enlarged abdomen and a lack of appetite. Our worst fears were realized when the Marsden confirmed that, sadly, she had relapsed.

Naomi then spent a number of weeks in hospital and was given four courses of high dose chemotherapy. This time, rather than being attached to chemo drips for two or three hours at a time, she was attached for up to five days.

In August, the same surgeon operated on her again at St George’s. This time, the operation was far from successful. In fact, after ten hours of surgery, the team had not managed to remove any of the tumor. We were devastated, particularly as we believed there were no further treatment options left for our daughter. However, after a visit from Marsden doctors the following day, we learnt of a further treatment that Naomi was being considered for, MIBG.

We were already familiar with the term MIBG, as Naomi had had a MIBG scan to confirm her diagnosis. At that time, a small amount of radioactivity had been injected into her blood stream, which the neuroblastoma cells had taken up. We hadn’t realized, however, that by giving a larger amount of this same substance it would, in theory, attack and destroy the neuroblastoma cells from within.

Before this treatment started, however, Naomi had to endure a bout of shingles, followed by septic shock, which saw her admitted to intensive care at Guy’s Hospital in London.

Once the MIBG treatment started, Naomi herself was radioactive, so we had to be careful about how near we got to her and how much time we spent with her. She also had to be sedated for 5 days and left in a lead-lined room.

The initial results from this treatment looked promising and, just before Christmas 2003, we received a phone call to say that things were looking good. So, Naomi was able to enjoy a wonderful 4th birthday on 15 December, when the star guest at her birthday tea was Claire the play specialist. And, Christmas was a special day too. However, Naomi fell ill on Boxing Day.

We took her to Maidstone that day and then to the Marsden on the Tuesday for a scheduled appointment. She became increasingly unwell and died at the Marsden just two days later. Breaking the news to her lovely brother Kristian, who is now ten, was the hardest thing we had to do. They loved each other so much.

When Naomi was in hospital, she loved watching Disney videos, and Snow White and Sleeping Beauty were her favorites. It didn’t matter how many times she watched them, she still shouted “Don’t touch the spindle Sleeping Beauty” and “Don’t eat the apple Snow White.” And, in the end, it was the same for us. However much we went through as a family, we still had hope, and that’s really important.

For us, hope for the future continues to be in the shape of Kristian, and our special blessing, Elsa. Elsa was born on 1 June last year and has brought so much happiness into our family. We have such wonderful memories of our four years with Naomi, and we know she would have adored her new baby sister.

Nikki’s Notes: Naomi and her special relationship with Claire makes me smile, everytime I read over that story. I want to thank Naomi’s mom, Angela, for all her support during the pre-stages of the Blogathon as well as during! She’s a wonderful lady! She told me that Naomi would be watching over my shoulder as I wrote, and I honestly believe she is. I keep having those moments where I see something out of the corner of my eye, but then, nothing is there. I'd like to think it's Naomi!

Much love to everyone. I'm on instant messenger if you want to say hi!!! pookielocksgirl

Sarah here again =)

I found this image online, and thought that for 12:30, we'd do something fun.

What do you think H.O.P.E. stands for?
on a side note, Caryn has posted about my best friend who is in remission and her mother who passed away. Caryn is a wonderful person!
Christi Thomas Stories! [Post #30 12 AM]

[Is it really midnight already??]

Here's my Christi story:

I first met the three Thomas girls on September 4th, 2004 (7 days before Christi's diagnosis). I work at a children's museum and the girls came in to spend the morning here. Angela said she'd not taken them into my exhibit before and wasn't planning to stay due to the atmosphere, a bit dark and she thought a bit advanced for a 3 and 5 year old. I met them at the entrance and immediately fell in love with two of the brightest, kindest little girls I'd ever met. We spent what seemed like hours in the exhibit, playing and learning. I believe the girls taught me more than I taught them. Anyway, lunchtime came and Angela said they were off to the Art museum to continue on their Columbus museum hop. About an hour or so later, I looked down the hallway and saw the Thomas girls bounding down the hallway. When I asked what happened to the art museum, Angela said they requested to stay here and play instead. Needless to say, I was thrilled and touched. So we played the afternoon away and said goodbye. That week I couldn't stop telling my friends and co-workers about these sweet little angels that came to the exhibit that day.

About a month later, I was sitting at my desk when a co-worker came in and said there were some guests asking for me, a little girl named Christi who had cancer. I searched my memory for a little girl with cancer, and while I see hundreds of kids every day, some of them stick out. But there was no Christi with cancer in my memory. So I went into the exhibit and looked around, pretty soon a little one came running up to me with a mask on her face and a hat on her head. She took off the hat and said 'look I'm bald. I have cancer!' Then I saw her eyes, and immediately recognized those huge, beautiful, sparkling blue eyes. My heart fell to my shoes. Then sweet little Shayla came running up behind her, followed by beautiful Angela, who seemed to be holding the hand of Mr.
Clean. Angela told me about her diagnosis and her website and asked me to pray for Christi. She also told me that they were at the hospital that morning, feeling down and sick, and her mother suggested they take dad to the museum. With that, Christi perked up and felt better, and off they went to the museum. She told me again how excited she was at finding the pieces of the exhibit and how much fun she was having. I tried as hard as I could to fight back tears and be as excited as she was, but the minute they left, I found an empty room and wept for quite some time.

Since that day, I've been keeping in touch with the Thomas', going to the girls recitals, visiting them in New York and Philly, and even got the chance to accompany them to Disney World for Christmas! I just can't get enough of the Thomas family. They've taught me so much about love, sacrifice, faith, strength, and kindness in the few years that I've known them. I thank the Lord every day to have them in my life.

By Traci Weaver

Saturday, July 29, 2006

eeek!!! we're up to $947!!!!!!! only $53 more to go!!!!

It's Sarah again =) AIM is CroMagnon Origin

For this post, I would like to turn attention to the parents, caretakers and families of all the children we're raising money to support today.

You carry so much responsibility and bear it so gracefully, sacrificing so much and giving your hearts fully to your cause - being a parent, no matter what.

I applaud all of you! You're such a critical part in this battle and you deserve so much love.

*sends out hugs to all of you*
to whoever just imed me--please do it again! i accidentally clicked "no" instead of "yes" to talk to you!!!
[We’re up to $922!! Please Sponsor Me! I’d really really really like to reach $1000!!!!]

[Nikki says, PLEASE im me!!! pookielocksgirl I'm getting tired!]

A message from Bill Hooker, the husband of Cat, the matron of the Blogathon: “I work in a research lab whose primary focus is the MYC gene family, including N-myc in development and neuroblastoma. The experiments I am doing this week, in fact, are designed to figure out whether the N-myc gene is read into one or two proteins in various cellular contexts. Although our lab works on developmental as well as cancer models, our long-term goal is an understanding of MYC genes that will help us to improve cancer treatment. It's a powerful motivator for me to be reminded of the patients waiting for that treatment.”

Courageous Connor Gerber [Post #28 11 PM]

Connor was diagnosed a couple of days after his 4th birthday he had several rounds of chemo but the docters told us that they could no longer do anything for him and he was given 12months max of survival, we as his parents could not accept that and heard via a friend of Sloan Kettering Cancer Centre in New York, we corresponded immeidately and was asked for a deposit of $350 000, started 1 week before Christmas last year with fundraising and arrived in New York on the 23rd of May, Since arriving in New York Connor has had 2 high doses of chemotherapy that he has never had, a broviac line was put in also something he has never had use to get his chemo through a normal IV, will be having a week of scans and test next week and operated soon afterwards to remove his main tumour.

Please visit Connor at myself and my husband will do anything to save our little warrior for we are just waiting for his miracle to happen. Thank you for supporting us and other families out there who is also fighting this horrible disease.

Nikki’s Notes: Connor's smile is AMAZING and it just melts my heart. In that picture, he's going through so much pain, yet he has a grateful smile! Praise God for bringing us Connor!!! Stop by his site and show him some love!!

Hello, Sarah again ^-^

[10:30 PM]

I have a very important message for everyone.

Donate blood, please.

Many children who are battling cancer, like Codey, rely on blood donations or blood component donations (apheresis) for platelets, plasma, red cells and infection-fighting white cells that they either can't create on their own or are destroyed during chemo. Some rely on donations for full transfusions.

Remember that there is no substitute for human blood, and that blood is needed for more than emergencies! It is used for patients with cancer, as well sickle cell anemia, hemophilia, and many other disorders. Many of these patients require transfusions on a regular, frequent basis.

You can donate if:

~You are at least 17 years of age
~You weigh 110 pounds
~You are in good health
~You do not have a disease that can be transmitted by blood

About apheresis:

~A single apheresis donation of platelets can provide as many platelets as 5 whole blood donations
~A platelet transfusion from a single donor greatly reduces the chances of an immune system reaction to the transfusion.
~Bone marrow transplant, cancer and leukemia patients whose immune systems are already compromised, benefit particularly from single donor platelet transfusions.
~Apheresis donors' donations go through additional typing called Human Leukocyte Antigen (HLA) typing to ensure that the match between donor and recipient is as close as possible. Donors are then matched with specific patients in hospitals.
~People who donate just platelets can donate every 3 days for a maximum of 24 times a year.

Many apheresis donors find the knowledge that they are helping a specific individual in need particularly rewarding.

Here's how to donate, either through apheresis or as a whole blood donor:

1) Determine if you meet the basic requirements
2) Call the Red Cross at 1-800-GIVE-LIFE (1-800-448-3543)
3) OR visit to search for a blood drive
The Psychic Cat of Santa Monica says, "We're still at $917. If 83 people pledged $1, we'd be at $1000!"

[It appears that Blogger will NOT be shutting down. False Alarm!!]

Fighting Josh Powell! [Post #26 10 PM]

Josh was diagnosed 5 years ago with Neuroblastoma Stage IV.
It was 1 month before his 9th birthday. He underwent 6 rounds of
Intense Chemotherapy, 2 surgeries, a stem cell transplant & radiation--all the
Standard for NB treatment. Josh's cancer didn't go into remission
as quickly as everyone would have liked & his family pursued another treatment -
3F8 monoclonal antibodies, an experimental treatment at Memorial
Sloan Kettering. Josh withstood 9 rounds of the antibody treatments.
That's where Josh & his family met beautiful Christi Thomas & her amazing family.

Josh has just turned 14 and is very, very blessed to be healthy
& cancer-free! Josh realizes what a miracle God has performed
in his life & he is dedicated to giving back to those who have
helped him along the way. He also wants to help change the future for kids who
will also travel this rocky road. He helps the Ronald McDonald
House by collecting tabs and cans & taking them to the Recycling center (along with the help from his Grandparents). This is quite a time consuming chore but Josh is devoted to expanding this project to benefit RMH because he really enjoyed the time he spent there (almost 7 months altogether) and the friends he & his family have made while there.

He and his sister have also become involved with Alex's Lemonade
Stand and raised more than $2400 to benefit childhood cancer Research!

Sponsors, thank you for helping kids like Josh have a fighting chance. Childhood cancers don't receive nearly the funding that adult cancers do, that's why fund raisers like this one are imperative to the future of all kids who will be diagnosed with cancer. With your help, we CAN defeat this monster called Neuroblastoma!

Thank you,
The Powell family

Nikki’s Notes: It's amazing that Josh and his sister raised $2400 for Alex's Lemonade Stand!! How extraordinary! Be sure to stop by his site and tell him what a great job he did!!

Please visit Josh & his family:

Hello, Sarah again ^-^

Post #25 9:30 PM

Codey St John is a Warrior!

Codey St John is a 6 year old from Bellaire Ohio. Recently, on March 6th, 2006, he was diagnosed with stage 4 Neuroblastoma. On May 31st, Codey received the news that he had a remarkable impression from his latest bone marrow biopsy. The marrow on his left side is Clean ~ no cancer cells! The marrow on his right side which had 60 % cancer cells is now down to 10%! So, on June 28th, Codey had surgery to remove his remaining tumors. 97% of the tumors were removed. Codey’s surgeon said that once he got inside, it was like he had a bunch of little ones. It almost looked like a bunch of grapes instead of one huge mass. The tumors came out to be about a size of a grapefruit when put together. The surgeon said it was a difficult surgery, because it wrapped around his Vena Cava and Aorta but he felt confident that chemo would clean up the other 3 %! Now, Codey is recovering from surgery and finishing up his chemo. He’s needed quite a few transfusions and had had problems eating. Please keep him in your prayers right now as he works further into his recovery!

Nikki’s Notes: Codey is a very popular guy! He has 2 websites which can be found here: and

Sarah's Notes: The Vena Cava and Aorta are the two main vessels that protrude from the heart. Codey is such a brave kid! Please keep him and all the other children along with their families in your prayers =)

His journal can be found here, for those who want to follow on his journey
Nikki (on right) & her best friend Jen say, "We're at $917! Just a little more is needed to reach $1000!!"

Anna O’Connor fights a Childhood Disease as an Adult! [Post #24 9 PM]

[We have a SERIOUS problem folks! Blogger is going to shut down between 12-2 AM EST for maintenance! I might have to change locations for 2 hours. Stay tuned! If anyone has any ideas, please let me know!!]

Anna O'Connor (20) was diagnosed with High Risk, Stage IV Neuroblastoma when she was 17, prior to her senior year in high school. An incredibly slowly progressing disease has allowed Anna to complete her sophomore at Wheaton College, including winter semester at Westmont College in Santa Barbara, CA.

Since February of 2006, doctors have been treating the disease as a chronic disorder with a Phase 1 trial using Zometa combined with low-dose oral chemo, and Cytoxin .

Throughout her struggle with this beast, Anna has been involved in drama, swimming, varsity badminton, and has been working the past two summers as a life guard at Northside Pool. She has also kept active in her church, Community Fellowship in Carol Stream, playing and singing in the Praise Band, Drama Team and as a leader in her youth group. During her senior year in high school, she was the principal flutist for the symphonic band and orchestra! Anna’s strength & love has continued to center on her three younger siblings, Kate, Jamey, and Kelly.

Anna received an award for her essay entitled, “The Letter I Would Like to Have Received from a Friend or Relative During My Illness”. It can be found here in its entirety.

Nikki’s Notes: I think Anna is amazing. Being diagnosed with a children’s cancer at age 17 has got to be extremely difficult, but I know Anna is up to the task!

I tried accessing Anna’s site yesterday, and Homestead said it had been disabled. If anyone knows of a new link, post a comment!
[8:30 PM]

Hello everyone, I'm Sarah, and I'll be helping Nikki for a while.

You know, there are a lot of people who will look at children who have cancer and then look away, because they feel guilty about feeling miserable about their life.

I say don't.

Everyone goes through trials in life. It's a personal thing. These children are cancer survivors. Their parents are surviving a difficult battle as well. I'm an abuse survivor. You are a survivor of your own kind. Everyone who is alive today is a survivor of some kind of trial, even if that trial is still going on. The people who have died have also survived trials. Everyone has them.

I'm thinking that maybe, instead of comparing the trials we go through in life, if everyone can look at and be open about their trials, we can all reach out to each other and draw what we need from each other. These children are all so open and honest about what they go through. They don't pretend to be strong. They don't think "Oh, so and so has it worse so I have no right to complain"

I think there's a bigger message than many people see here. A lot of people see a message like "There is joy in the darkest of times" and "It could be worse"

True, yes, but here is another message

"Reach out. Who knows who you'll help while you're looking for help."

I think all of us, the older we get, forget that we need people and that we're not meant to be alone.

So if you're reading this, and going through a trial, remember that every hardship brings forward different strengths, and you never know who will need those strengths until you've reached out your hand and you never know what you may find unless you try.

One more very important thing we can learn from these beautiful children =)
Tasha, Zoey, & Leia would LOVE to reach $1000!!! We can do it for CNCF!!!! Sponsor Me!

Raymond Supports Other Warriors Like Himself! [Post #23 8 PM]
Raymond in his own words:

Hi I am Raymond Bautista, cancer combat survivor, for me getting cancer opened up doors, yes it hurt, I was in a wheelchair, but it allowed me to make new friends, Dale Earnhardt was my best that I met. When he saw me at a race he would sneak up on me. Thanks to Dale I met Brooks and Dunn. I learned how to build websites because I got cancer, so I built my first website in 1999 at . It was hosted by homestead. The CEO and Founder sent me an invitation to meet him and tour his company. I also became good friends with Lee Rodgers and his morning show crew. Art Bell too became my friend and he even sent me a bunch of gifts because I got him a Signed Raider helmet from Jerry Rice. The Oakland Raiders also brought me out to visit with them on team picture day. Most importantly, Cancer allowed me to meet and become good friends with Monica Crowley. My radio appearance with her is archived here:

I chose to beat the cancer, fighting was not enough, annilihating was. But the last person, and the most important man, I knew was Col David Hackworth. He and I traded Chemo war stories. He told me he had my picture in his office for inspiration.

Nikki’s Notes: Raymond has an amazing website! He has created an entire page called the NB Christmas Tree in which all the NB Warriors have a place! Please be sure to check it out and send Raymond some love, by letting him know what a great job he is doing!!!
ACK! We're up to $892!! Thank you! Thank you! Thank you! Maisie thanks you too! Let's get to $900 or better yet, $1000!!!!!!

Super Fighter, Erin! [Post #22 7:30 PM]

Erin began treatment on July 23 in 2002 with chemotherapy. The protocol called for organizing chemo into five segments of twenty-one days each. Erin's second and fifth rounds were identical, but all of the other rest had different lengths and different chemicals.

The first round was especially rough on Erin, the rest she tolerated remarkably well, attending school, dance lessons, and church activities.

After Erin finished the induction chemo process, she had a large round of tests and scans to determine how effective the chemo had been. Because the tumor had been responsive to the chemo (bone marrow cleared and tumor shrunk considerably), she was then scheduled for resection surgery. That was a twelve-hour ordeal with a two week recovery, but she came through with flying colors and recovered in time to begin the first of two stem cell rescue procedures.

In Erin's first stem cell procedure (December 2002), she received high doses of carboplatin, etoposide, and cyclophosphomide. She had a complication-free transplant and returned home on Day +11 (before Christmas). In January, she returned to the hospital for rescue number two, which consisted of total body irradiation (TBI) and Melphalan. She left the hospital on Day+12 in time for her school Valentine's party.

After stem cell rescue, Erin received six consecutive (working) days of local radiation to her original tumor site. The remainder of her treatment consisted of cis-retinoic acid (accutane) given orally at home for six cycles and a series of vaccines built from Erin's own tumor cells that we hoped would help train her body's immunity system to fight and kill any tumor cells that lingered or recurred.
Unfortunately, Erin relapsed in March of 2005. She’s back to fighting again.

Nikki’s Notes: Erin’s mom told me that Erin is enthusiastic about ALOT of things. She loves soccer and horseback riding and almost everything else. She is proud of having a lot of really good friends. I bet Erin would love to become friends with some fellow NB fighters! Please visit Erin’s site here: . Sign her guestbook or drop her an email!
Sarah Smith Shines![Post #21 7 PM]

[The surprise party "surprise" has been uttered, and people are clamoring around in my house. And I'm up here on the computer talking about some wonderful kids!!]

Nickname:Princess Groovy Chick
Age 10

Diagnosed with Stage IV neuroblastoma in May of 2002 when she was six years old, Sarah's been through too much and grown up too fast; however, she still manages to sprinkle each day with her special, custom blend of giggles and joy, compassion and courage.

Sarah and her family spent fifteen years traveling full time, doing about 160 concerts in churches every year. She and her brother Nathan, (16) were on the road with her parents since they were about four weeks old and have been in forty states, Canada and Mexico. For seven of those fifteen years, their family lived year-round in a 45 foot, custom-built two-bedroom R.V. pulled by a Kenworth semi truck. In their fifteen years on the road, they recorded thirteen CD's of original music. When Sarah was diagnosed on May 17, 2002, her family left the road so they could dedicate themselves to doing everything possible to help her get well. Sarah's dad, Steve, now pastors First Assembly of God in Smithfield, NC.

Sarah has a wacky, irrepressible sense of humor and loves Sponge Bob, horses, art, music, and writing her own books. She used to be blond and curly-headed but chemo, radiation and a stem cell transplant did away with the old look; her new look is brunette and her new attitude is, "I have survived and I'm glad to be alive!"

Sarah’s mom shares this wonderful quote that she says sums up Sarah very well! A couple of days after Sarah found out she had relapsed she declared, "Just because I'm 10 years old and have cancer doesn't mean it's going to steal my happiness!"

Here’s a wonderful Sarah story, submitted by her lovely mom:

“After our morning meeting with the transplant coordinator, we moved to the area where Sarah would be having her MIBG and CAT scans. The waiting area consisted of two long rows of chairs with about a four foot aisle in between. The nurse gave Sarah two small hospital gowns to put on, one to tie in the front and the other one to tie in the back; I started to go into the little dressing room with her to help but she pronounced, "I can do it myself, Mom!"

“As I sat back down next to Steve, the 70-year old woman beside me leaned over and asked, "Your daughter doesn't have cancer, does she?" When I nodded in the affirmative, her face filled with such sadness. She said, "Oh how terrible for a child so young to have that disease. I was just diagnosed with breast cancer myself and am facing a mastectomy." I could see the fear and anxiety in her eyes and expressed my compassion to her with much more empathy than I ever could have done before Sarah's diagnosis. The lady wanted to know more about Sarah so I told her that she'd been through seven rounds of chemo, was getting her nutrition through a feeding tube, had been through two major surgeries and was facing a stem cell transplant. As I listed each thing, I could see the sadness growing on this woman's face as she thought about a small child having to face so much pain and so many challenges.

“Suddenly, right in the middle of our conversation she stopped talking abruptly and said, "What's that sound?" I paused to listen and heard very clearly over the top of the dressing room door the unmistakable sound of Sarah's sweet little voice singing a happy, childish, out- of- tune melody. The expression that appeared on the lady's face was priceless. Tears welled up in her eyes and she whispered in disbelief, "I can't believe your daughter is singing!" I could see the change in her taking place--instead of being consumed with anxiety and dread this woman sat in the hospital waiting room and filled her ears and heart with the sound of a cancer-ridden girl singing with uninhibited joy.

“A few moments later, Sarah flung open the dressing room door with her characteristic panache and stood cheerily in front of us in all her glory. Her hat was on lopsided revealing most of her cute, shiny head, her feeding tube was nonchalantly tucked behind one ear, and the two mismatched, wildly clashing robes were scrunched all together around her waist. The only clothing of hers that remained was her little navy shoes and white socks, which appeared at the end of her skinny, pale legs, which looked all the thinner because the robes were way too short. She, of course, was completely oblivious to her comical appearance so I gallantly suppressed my strong urge to giggle.

“The nurse saw that she was done changing and told her that she should use the restroom before the scan started because she would have to lie perfectly still for forty-five minutes. Since the restroom was at the far end of the two rows of chairs, I asked Sarah if she wanted me to go with her. She blithely responded, "Oh no, I can do it myself."

“She then turned to go but instead of walking sedately as all of us boring grown-ups would have done, she deciding that skipping was the best mode of transportation. The lady beside me stared in open-mouthed wonder as my ridiculously dressed, seriously ill, bald child merrily skipped her way toward the restroom. The chairs on either side of the aisle were filled with about a dozen people waiting for their names to be called; the only thing they all had in common was that their faces were filled with sadness and fear. One by one, I saw their heads rise as Sarah approached and as she passed, I saw their fear give way to smiles. She disappeared into the bathroom and when she re-emerged, she shifted herself back into skipping gear and jauntily hurtled her way back to us.

“What did a sight like that do for people facing their own mortality, facing their own fears? I think it gave them a little infusion of courage and joy; it gave them an image to carry in their minds as they submitted their bodies to the machines that would spell out life or death for him. It gave them a reason to smile. And as Sarah has often told me, "That's why I was born, to make people smile." I don’t think there’s any doubt that she is fulfilling her mission!”

Nikki’s Notes: After reading the above story, I really don’t have anything else to say about the lovely Sarah. I think that story sums it all up! Please visit Sarah’s site here:
My puppy, Maisie, would LOVE for you to Sponsor Me! Can you really resist that face?? We've plateaued at $837!! Let's get $900!!

Kaitlyn is a Super Girl!

Kaitlyn is six years old she was diagnosed with Neuroblastoma Stage IV (At Age 3 and a half) on June the 21st 2003, N-MYC Non-Amplified, unfavourable shimada. With a tumour filling her abdomen, which had spread to her neck, knees, hips and cells in her bone marrow lining, she has been placed on a tough treatment protocol (COG ANBL00P1), which consists of 5 rounds of high dose chemo, surgery to remove as much remaining tumour as possible, two rounds of mega chemo, with Double Stem cell Transplants/rescues, followed by 10 rounds of radiation and six months of Accutane. At diagnosis we were given the terrible odds of less than 20%.

Kaitlyn's current condition - "Stable Calcified Disease remaining" Unfortunately Neuroblastoma is a cancer with an extremely high relapse rate and currently there is no cure. We remain forever hopeful that our girl continues to defy odds and remains "God's Miracle".

Nikki's Notes: Kaitlyn's wonderful mom emailed me today to see if I could add her in on the fun! Here she is! She has some wonderful pictures and links on her Caring Bridge site. She also has some great shots of her and her older sister! Please go visit:
Benjamin Thomas Braves the Beast [Post #19 6 PM]

Benjamin is battling a different kind of cancer than the rest of the Warriors. He was diagnosed with a very rare form of cancer called, Rhabdomyosarcoma. Only 4 out of a 1,000000 are diagnosed with it a year. This Thomas family as well as Christi Thomas’s family were in the hospital in Columbus, Ohio at the very beginning of their respective journeys.

Benjamin was 4 years old and I noticed a lump in his neck. After visiting our peds. doctor . We got the worst news ever that parents could ever receive. Benjamin was DX with Rhabdomyosarcoma stage 3. Only 4 out of every million children are DX a year with this dreaded disease. Benjamin underwent 42 straight weeks of chemo therapy and every third week has would be admitted to receive 3 different chemos at once. Twelve weeks into his treatment Benjamin had to start Radiation therapy for 31 treatments of the head and neck. Since treatments Benjamin has been doing very well except for some minor issues popping up here and there. November 2005, Benjamin was in school waiting in the line for the water fountain when he passed out and went into convulsions. He has had some ER visits for things and everything has come back clean. Benjamin has been an awesome kid growing up and just having fun. Even when he was going through treatments people would come up to me and ask if he really was getting chemo. He would get out of the hospital after 3 different chemos, would come home and play outside and ride his bike. You would never thought he was sick. Benjamin would just keep trucking one day at a time. He was a great fighter, never complained once about his treatments. But, his many injection he received he would cry. He would look at me and say daddy I don't want anymore shots. How do you tell a 5 year old that we have to do this. Some days he would say daddy I don't want to go to the hospital. Can you blame him, I don't think I would want to either. One of the greatest remarks ever said by anyone under going chemo therapy, especially a 5 year old child was when he was almost done with chemo, I was driving Benjamin home from the hospital he looked at me and said "Daddy will CANCER make me die" Wow what a question being asked, especially a 5 year old. He asked me several times towards the end of his treatments and I would always turn my head because I would start crying. Well one day I got the question again. "Daddy will CANCER make me die", well I finally decided to tell him the truth. Yes Benjamin you can die from this, well what do you know, I got the funniest remark ever. Benjamin looked at me and said "Good thing I didn't die" I asked him how did you beat it and he told me "Because I was stronger" I could not help but laugh the rest of the way home calling everyone I knew...... Benjamin has done several things from Dx until now. I just pray to our Lord in Heaven for everyday that I get to spend with Benjamin. He was a trooper from the very get go. The very first morning we woke up in the hospital from being DX, I was outside his room crying and talking with our doctor when all of a sudden I heard everyone laughing. I turned my chair to see what is going on, well wouldn't you know it my little stinker was outside his room with an IV in his arm shooting people with a 10cc syringe with water. Yes my boy figured out that you can turn a syringe into a weapon, a water weapon. Boy did he have fun. Shooting doctors, nurses and whoever else was walking down the hall way. For the next 2 hours I don't think the floor got any work done. Through every treatment he was doing something. From riding his IV pole all over the hospital, to driving his remote control cars down the floors of the hospital all hours of the day. He was always making everyday a fun day.

Benjamin is now 8 years old, he will be 9 in September Praise the Lord. He will be in the third grade. He really has a treat in store for him, he is not a school fan he wishes the summer break is year round. He loves playing sports, baseball is his favorite sport of all but we now have a new sport start for him this fall. He has been asking me for 2 years to play football, well of course with everything he has been through I have been leary about letting him play. So I contacted our Oncologist and he told me he is 3 years out of chemo, it is time to let him be a boy and if he wants to play football let him, and tell him good luck...I think he will have the mentality to play because all he wants to do is fight. I think his favorite thing in life to do is to fight with his little brother Dillon day in and day out. So now I have him something that he can legally hit someone, oh my what am I doing.... We went to get him fitted for his helmet and shoulder pads, and as we were leaving he asked if he was aloud to hit someone hard enough to break there legs. Maybe I should have put him in boxing instead. Benjamin has been having a great summer so far. We have been to the pool almost everyday, the zoo, Michigan Motor Speedway. We are just having as much with him and our other kids. Thursday July 27, we will be taking Benjamin in for his yearly MRI, we pray that we get the all clear sign. So we ask that all our prayer warriors help and pray for him. Daddy gets really nervous this time of the year.

From Nikki: Benjamin’s dad recently emailed me to say that Benjamin is still NED! He had his yearly tests a few days ago! Yea for Benjamin!

Benjamin’s father has also been very helpful during my quest to do this Blogathon. He’s been very encouraging and I wanted to thank him for it!!

Please visit Benjamin’s site:
Ethan Smith is a Fighter!! {Post #18 5:30 PM} [We're up to $837!!! Just a bit more to $1000!!!!

My son's name is Ethan Smith. He was diagnosed on March 5th, 2005 with NB Stage 4. He has completed chemotherapy, surgery, a stem cell transplant, radiation, and has just completed the 3F8 Antibody Treatment at Sloan Kettering, as we have just found out he is HAMA positive. Which is GREAT news!!!!!!!

Ethan is currently HAMA positive. This is GREAT news. Not only is Ethan's immune system trained to fight off those nasty Neurobalstoma cells, but he no longer needs to go to New York for the 3F8 Antibody Treatments. From this point onward he only needs to have his routine scans every three months to confirm his NED (No Evidence of Disease) status. As of right now Ethan is 9 months disease free.

It looks as if Ethan's next series of scans are due in Mid-August.

Goal 1- To get Ethan into Ned Status (disease free). This was confirmed on Oct. 21st, 2005.

Goal 2- To get Ethan Hama Possitive after 4 rounds of 3F8 treatments. This was confirmed on July 19th, 2006 (after 5 rounds of treatment) PERFECT!

Goal 3- To keep Ethan disease free forever. This will be the longest goal to follow. However, already having 9 months behind him, he is walking the road to recovery. As time goes by, the likely hood of the cancer returning becomes less and less.

Nikki’s Notes: Reading up on Ethan, I learned that he really enjoys the outdoors. He loves to go to the park or ride his bike. His favorite toys are fire trucks and construction vehicles. His favorite baseball team is the Boston Red Sox. So, if you’re a Red Sox fan, stop by his website & leave a message!!
Jennifer Lehman of "Kids Cancer Crusade" on The Thomas Team [Post #17 5 PMish]

[Side note: THANK YOU to everyone who has been commenting and/or iming me! Don't forget: pookielocksgirl is my aol im id!]

I am almost positive that at this point, my favorite Christi moment was when I had organized a fundraiser at my school for her fund. I got a call the night before from one of my teachers, who had so cleverly invited the Thomas Team to have lunch with us so that the students could actually see where their money was going. We raised $425 that day -- which is over $100 more than we have students (they were only required to pay $1 to wear jeans). It was an amazing day. The girls were chatting like crazy and I heard many, many jokes that day from Christi. To make it better, the next day I received an email from Angela saying that their plane tickets to Philly were $424. We had completely paid for them. I just felt heard. I was so happy that I got my school to come together like that.

I think that words can do no justice to what Christi and the amazing Thomas Team have taught me since her diagnosis, however, I suppose they will have to do.
She has taught me what is important. My priorities have began to straighten themselves out. I've learned more than ever, that life is not fair and that I would trade places with her in an instant. I know that no matter how much my heart is hurting and no matter much I'd like to run and hide at times, Christi has endured more than I probably ever will. I know that I need to grit my teeth and keep on truckin'. She gives me strength & hope. I have learned to embrace life and live it to the fullest...of course without forgetting to dance and tell a few jokes along the way.

I think, perhaps, most importantly, her journey has taught me that I have a purpose, a major purpose. Since Christi's diagnosis, my fondest memories have been the ones where I've been helping find a cure and just giving my love. I realize that I can't do much right now, but I also realize that EVERY prayer counts and that I can never give too much of my time. I know in the deepest realm of my heart that I am here to help find a cure and to be a solid support to the families effected by childhood cancer.

I love the Thomas Team with my whole heart and am constantly storming Heaven with my requests for this amazing family.

Okay, I'll stop now. ;-)
Love, Jennifer

Please visit Jennifer’s wonderful site:

Nikki’s Notes: Jennifer herself is a great inspiration to me. Not only has she wanted to make a difference, she IS making a difference! Please check out her website & email her if you’d like to have your cancer warrior added to Cancer Fighter pages!!
Side Note---we're up to $787!!!! Sponsor Me!!! I will do a tap dance if we hit $1000!!! And, I will wear this costume!

I'm 4 or 5 in this pic!
Post #16 4:30 PM

Razak is a NB Warrior!

Our story begins 18th November 2002. Razak’s parents had been married for an incredible 5 years, it was time to stop this honeymoon and start over with a new one a baby. Big brother Rishi wanted a boy so bad I think he actually prayed for once. Sure enough along came Razak. He grew and grew 98% on the charts. He had big chunky legs, a huge smile, and a bigger appetite. At 3 months he got a fewer and his pediatrician recommended a urinary tract work up. He had reflux, but there was also a 4cm renal tumor looming. The hospital was optimistic, saying that with surgery we would never see it again. Every three months we would have a CT scan and workup, everything will be fine.

But, on 1/15/04 we were told the tumor is back. With all those jabs and pokes, he smiles on, and in fact started walking. On 01/22/04 we were told Razak had Stage 4 Neuroblastoma.

Currently, Razak’s scans are clear!

Nikki’s Notes: Razak’s family seems very tight-knit and loving! He has a great older brother and a super cute younger sister! There’s a recent picture of them on his Caring Bridge site! Please visit Razak’s site to see it:
Beautiful Eden Adams [Post #15 4 PM]

Eden Rae Adams was diagnosed, at age 4, with a rare form of childhood cancer on July 16, 2004, Neuroblastoma, Stage IV. She had surgery to remove the tumor from her abdomen on July 20, 2004, with complete success. At the same time, a central line catheter, called a Broviac, was implanted in her chest to accommodate the many types of blood draws and medication infusions that her treatment requires. Eden has had two Broviac line infections, having her line replaced surgically once.

Eden was enrolled in the Children's Oncology Group Protocol, COG-A3973, has undergone six rounds of chemotherapy, and had a stem cell transplant in Dec 2004 and January and February of 2005. Eden has finished of twelve rounds of radiation. She was also randomized to the COG ANBL0032 clinical trial. She will not be receiving the experimental drugs, but the standard therapy, Accutane. She began Accutane as a form of treatment for possible residual disease on April 4, 2005 and finished in September.

On September 22, 2005, Eden was declared NED! NED means that there was No Evidence of Disease found in Eden's scans and tests.

On March 29, 2006 Eden's MiBG scan showed slight uptake in her lymph nodes in her groin area and one shoulder. This may mean that she has relapsed. We are doing more testing to determine what our next steps will be.

Nikki’s Notes: I was reading her mom’s recent update on Eden’s site in June and almost did a little dance after reading this: “Eden [had her] first dance recital. She danced to the song, the Rainbow Connection as sung by Kermit the Frog at Vets Memorial Auditorium.” Why did this make me freak out? Well, in my very first dance recital, at 3 years old, I did a dance to “Rainbow Connection” via Kermit the Frog & I’m from Ohio where Vets Memorial is. In fact, I graduated from college on the very same stage! Too weird.

I can’t resist posting my 3-year-old dance recital pic:

Also, here's a re-post of the strange, but amazing thing that happened to me today:

The absolute WEIRDEST thing ever just happened to me. I went thru the Steak & Shake Drive Thru w/ my dog to get some grub. When I came home, instead of running into the house, my dog ran to the neighbors' house directly across the street from me. I told them I needed to hurry because I was doing a blogathon for cancer today. The lady looked at me and said, "For Neuroblastoma?" I said, "Yes?" She said, "That's you?" I said, "Yes." Apparently Eden Adams, who I'll be blogging about later, is their niece!!!!!!! SMALL WORLD!!! I definitely feel close to God right now!

Please visit Eden’s site: and her blog: