Blogging for Christi & Friends!

2007-07-26T10:58:00.000-04:00

Hi all! This year's Blogathon, held Saturday, July 28th will be hosted here. Be sure and stop by to cheer me on. As always, SPONSOR ME!!

2007-04-03T15:51:00.000-04:00

How cute is Samantha Hughes these days?

This cute!

2007-04-02T13:04:00.000-04:00

Join in the Celebration for Christi's 10th Birthday!

With great excitement and tons of gratitude, Shayla and Alice in Wonderland would like to invite you to Christi’s Tea Party!

This will be a fundraiser for the Christi Thomas Memorial Fund. Tickets are $15.00 and include a light lunch (sandwiches, fruit kabobs, pretzels, cake and punch) entertainment including the Seneca East Show Choir, the Fremont Ballet School, Alice in Wonderland Characters and a DJ as well as a chance at an American Girl doll. Many other prizes have been lovingly donated and will be auctioned off.

The celebration will take place on Saturday, May 12th (Christi’s 10th birthday) at the Mohawk Country Club, State Route 231 – south of Tiffin. Doors will open at noon.Tickets are available on line at www.christithomas.com or at any Old Fort Bank Office. Seating is limited so you are encouraged to get your tickets soon.Christi's Tea Party. If you are not able to attend, but would still like to donate to the Christi Thomas Memorial Fund, we would be honored to receive your donation. To purchase tickets for Christi's Tea Party, please visit the Christi Thomas Memorial Fund site by going here: http://www.active.com/donate/christiOnce at that site, make a donation and let the committee know that you plan on attending during checkout. There is a special box on the checkout form and room for you to put your name and any guests you'll bring with you. Tickets are only $15 per person and include lunch and entertainment, so bring your friends. We think you’ll have a lovely time at Christi's Tea Party!

I will be attending! I can't wait to meet the wonderful Thomas Team!

2007-02-20T14:52:00.000-05:00

Christi Thomas's little sis, Shayla, made a BEAUTIFUL snowman at Christi's grave. It's the little things like this that keep our angels alive!

2007-02-20T11:16:00.000-05:00

Help Support Princess Eden's Pink Hair Campaign! Buy something from her shop and support her family!

2006-12-14T13:35:00.000-05:00

Amazing News!

(This is copied from Christi Thomas' site.

While Christi was on her death bed at CHOP in September, Shayne asked Dr. Maris if they would try to establish her cell line after she died. Dr. Maris looked down and paused. It took a bit for him to regain his composure, then he responded, "I've never had a parent ask me that. You don't need to do that. Of course we would be honored to try to establish a new cell line from Christi's disease." I'm so grateful Shayne had the wisdom and foresight to inquire about this. The best time to get a new cell line to grow is when the body is heavily burdened with disease and very soon after death.

We signed the paperwork and days later, about thirty minutes after her death we sat, cried, laughed and chatted through many tears as they drew large amounts of blood from her tiny, fragile, pale body. We knew Christi's NB had seen all of the front line agents and since she lived solely on experimental treatments from March of 2003 on, her cancer was exposed to nearly all of the current clinical treatments available too - yet nothing worked. Certainly there has to be something that will hault this wicked demon!

We knew trying to establish a cell line would be the very last thing Christi could possibly do to help others and if it worked it would be something that would continue on and on.....until the cure was found. We've prayed that her cell line would grow so that the could try to cure others, even though she succumbed. We knew Christi would want to help in any way she possibly could! This ties in directly to the $12,000 she raised with her "Alex & Christi's Lemonade Stands." Knowing Christi she would have joked with her beautiful little giggle, "If I'm dead, then it won't hurt and I can still help others with NB! Let's go for it!" This was the very last thing she could possible do to help contribute to the search for a cure for NB.

Today we are thrilled beyond belief to learn that, even though there was only a 20% chance of it working, Dr. Maris informed us that they did establish a new cell line and they will be able to try many different agents on it over and over again in the future to try to kill the cancer cells. We hope this helps reach a cure for all individuals currently fighting and yet to be diagnosed with neuroblastoma and other forms of cancer! With Angel Christi now assisting in the labs, the cure can't be that far down the road (smile).

Dr. Maris liked the name (presented in proper research study form, of course) Shayne gave it back in September (FU_NB06) and Maris told us, "If it grows, that's what it will be called." Nurse Pat Brophy commented, "I'll have a hard time reading all of the research reports without laughing." We think there couldn't be a better name for this evil disease that took away our precious Christi and now causes little Shayla to ask, "Am I still a sister?" F@#K You Neuroblastoma!

Although the news mad me cry today, we now take a bit of comfort in knowing that Christ's legacy of helping others will live on through the work of researchers doing science (one of her favorite subject) trying to cure hundreds of NB patients diagnosed every year around the globe. If we could do anything to prevent another family from experiencing the anguish we've had, we would!

While the news is tremendous for the NB community, I actually found myself very sad many times today. I think it is because I've lived on "hope" for so long. This was the very last earthly thing I was still holding out hope for. Thankfully, our wish came true; yet, now there is nothing I can still hold out and hope for.....and when (hopefully not "if") it is determined which agents will actually stop this beast that took her life, I think it'll be bittersweet too. (And if they discover that curing her would have involved something harmless and simple like vitamin C, seaweed and a dap of vanilla........ then I'll really be brokenhearted.)

Her legacy lives on!

Dr. Maris said:

We were successful in creating the FU_NB06 line. We decided to pool our resources and go for the line in one place, and the cell line was generated in Dr. Reynolds lab in Los Angeles. The line will be available for research studies in the next week or so.

We will use some of Christi’s preserved stem cells (a test vial) to
have a matched set of DNA—this is important for our research.

2006-12-11T09:57:00.000-05:00

Ruth was seen on Oprah!!

2006-11-25T20:23:00.000-05:00

RIP Caitlin Rose.

I met Caity during the blogathon. She was an amazing girl!

2006-09-19T21:20:00.000-04:00

Rest in Peace, little angel.

Always Remember: Christi Thomas

2006-09-11T19:27:00.000-04:00

Abbie, Christi, & Support the Fight

RIP: Abbie Shaw

From her site:

"11th September 2006

Our beautiful daughter Abbie died at 7.36 am this morning. After a fairly restless night she began to experience intense pain in her leg at 5.30am this morning. I managed to give her a dose of oral morphine and at around 6.00am I climbed into bed with her and was comforting her. At around 6.45am she began to fit and I was able to cuddle, comfort and reassure her. This was the first time in a while that I had been able to cuddle her as she had been in too much discomfort. Mike took over while I had a bath, then Jamie who was getting ready for school went to her room to say goodbye and she just died.

Our apologies for this e mail but we have spoken to lots of people today and cannot face calling everyone. We are truly devastated that we have lost our child but pleased she is no longer suffering. It is a real comfort to know that only five weeks ago she was playing, running and swimming at a party and this time four weeks ago spent 2 hours disco dancing. Last Monday she made flower shaped biscuits, on Wednesday made a supermarket till out of boxes and collected Jamie from school and Thursday painted egg cups. On Saturday morning we took her for a walk in her buggy to the local shops and she insisted on renewing her library book.

The funeral service will be child friendly. We are requesting that children wear their school uniform and bring a flower (unwrapped) from their garden. These will be collected and scattered on Abbie's casket when she is buried. We also request family flowers only but donations may be made to Abbie's Fund which will be shortly be becoming a registered charity. Adults may wear some pink if possible. We do not want Abbie's funeral to be too sombre - as Mike says he wants Abbie to look down and wish she was there."

In other news, 2 wonderful girls have started a myspace site for christi in which to gather & pray. If you have a myspace site, please check it out!

The wonderful Nadine, included some information on Christi & Alex Scott in her online newsletter! Go check it out!

2006-09-09T18:04:00.000-04:00

Christi Thomas needs your prayers!

She is slowly making her way back to Our Lord. She has run out of options and is being treated for severe pain at chop. Her parents are asking for prayers of manageable pain and peace for Christi. Shayne & Angela could use some rest themselves. Please also pray for Christi's younger sister, Shayla, who will sadly be an only child soon enough.

My heart is breaking. Please send the family your love and support.

2006-08-26T18:03:00.000-04:00

I'm in SHOCK! I just received an email, that "Blogging for Christi & Friends" received the Cat's Choice Award from www.blogathon.org! You can read more about the awards here. I'm just very excited!

2006-08-08T09:20:00.000-04:00

Rest in Peace, Kylie Houtchings.

2006-08-02T11:54:00.000-04:00

Make that a total of $1300 raised for CNCF!!

2006-07-31T13:34:00.000-04:00

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

2006-07-30T09:21:00.000-04:00

[post#48 9 AM]

Goodnight!

2006-07-30T08:30:00.000-04:00

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!

THE CHOSEN MOTHERS

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

2006-07-30T08:01:00.000-04:00

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: http://www.caringbridge.org/oh/kylie

2006-07-30T07:34:00.000-04:00

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 www.abbieshaw.me.uk

2006-07-30T07:03:00.000-04:00

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! www.dylanhartung.net

2006-07-30T06:33:00.000-04:00

Finally! A "free" post for Nikki. I think I'm going to need a 1/ hour nap!!! Thank you all!!!! $1047!!!

2006-07-30T06:09:00.000-04:00

this is what i want to be doing!

2006-07-30T05:52:00.000-04:00

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: www.caringbridge.org/ms/keira

2006-07-30T05:39:00.000-04:00

[5:30]

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!

2006-07-30T05:03:00.000-04:00

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 www.caringbridge.org/visit/ruthmersburgh

2006-07-30T04:57:00.000-04:00

Another kitty post! Here are Nikki & Sarah at their prospective computers:

Sarah

Nikki

2006-07-30T04:42:00.000-04:00

[4:30}

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?

~Yes
~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

2006-07-30T03:56:00.000-04:00

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!!!

2006-07-30T03:27:00.000-04:00

[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.

2006-07-30T02:59:00.000-04:00

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. www.caringbridge.com/page/friendsformichael

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

2006-07-30T02:38:00.000-04:00

this is what i will feel like soon!

2006-07-30T02:32:00.000-04:00

[2:30]

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.

2006-07-30T02:06:00.000-04:00

OMG!!!!!! I AM SPEECHLESS! We have reached $1,047.00!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

2006-07-30T02:01:00.000-04:00

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: http://writegal.blogspot.com

2006-07-30T01:35:00.000-04:00

[1:30]

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 www.cancer.org for the information.

2006-07-30T01:32:00.000-04:00

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

2006-07-30T00:51:00.000-04:00

[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

2006-07-30T00:32:00.000-04:00

[12:30]

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?

2006-07-30T00:15:00.000-04:00

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!

2006-07-30T00:02:00.000-04:00

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

2006-07-29T23:44:00.000-04:00

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

2006-07-29T23:32:00.000-04:00

[11:30]

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*

2006-07-29T23:25:00.000-04:00

to whoever just imed me--please do it again! i accidentally clicked "no" instead of "yes" to talk to you!!!

2006-07-29T23:01:00.000-04:00

[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 www.connorgerber.com 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!!

2006-07-29T22:44:00.000-04:00

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

2006-07-29T21:54:00.000-04:00

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: www.caringbridge.org/page/josh

2006-07-29T21:17:00.000-04:00

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: www.caringbridge.org/ and www.codeystjohn.com

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

2006-07-29T21:00:00.000-04:00

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!

2006-07-29T20:34:00.000-04:00

[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 =)

2006-07-29T19:53:00.000-04:00

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 www.ussgoblin.com . 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!!!

2006-07-29T19:31:00.000-04:00

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: http://users3.ev1.net/%7Eerinbuenger . Sign her guestbook or drop her an email!

2006-07-29T18:51:00.000-04:00

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:5-02
Relapsed:6-06

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: www.caringbridge.org/nc/sarahsmith

2006-07-29T18:48:00.000-04:00

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!!

2006-07-29T18:23:00.000-04:00

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: www.caringbridge.org/ne/kaitlyn

2006-07-29T18:06:00.000-04:00

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: www.caringbridge.org/oh/benjamin

2006-07-29T17:31:00.000-04:00

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!! www.caringbridge.org/visit/ethansmith

2006-07-29T16:59:00.000-04:00

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: www.freewebs.com/kidscancercrusade

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!!

2006-07-29T16:56:00.000-04:00

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!

2006-07-29T16:35:00.000-04:00

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: http://www.caringbridge.com/tx/razak/index.htm

2006-07-29T15:59:00.000-04:00

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: www.nikkichannel.net/pics/pose2.jpg

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: www.edenadams.com and her blog: www.edenadams.blogspot.com

2006-07-29T15:31:00.000-04:00

Fighter Chandler Booth! [Post #14 3:30 PM] [the food for the party has arrived. i'm still wearing sweatpants!]

Chandler was diagnosed with Stage IV Neuroblastoma on July 17, 2003. He was only 47 days past his first birthday! He has endured 5 rounds of very substantial chemo, a 6 hour tumor-removal surgery, stem cell harvest, two stem cell transplants, and 18 days of radiation. We are now off therapy, and just doing scans every 3 months to look for improvement.

It has been 2 years and 3 months since the end of radiation, which marks the end of formal treatment. Chandler took Accutane for 6 months after that in 2004 and again also for 6 months in 2005. He is now 4 years old, living large and going strong after lots of therapy and prayer! He just had his scan done on July 23 and everything looks good!

Nikki’s Notes: I can ascertain from Chandler’s site that one of his biggest supporters is big sister Betsy! Please send her some love too! [Sorry I can't write more at this moment, but my house is in chaos!]

Please visit Chandler and his family here: www.caringbridge.org/ga/chandlerbooth

2006-07-29T15:00:00.000-04:00

Fighter Aleah is NED! [Post #13 3 PM]

Aleah was diagnosed with NB on Dec 28, 2003 and finished treatment in 2005. She had 6 rounds of chemotherapy, a stem cell transplant, radiation, and the Ch14.18 experimental treatment at the end of her treatment. She is currently NED and in remission! She was treated at UK Children's Hospital in Lexington, KY and Cincinnati Children's Hospital in Ohio.

Aleah and her family currently live in Winchester, KY where Aleah will start Kindergarten this fall. She is growing, beautiful and as happy as ever. She loves her nurses and doctors.

Aleah and her family are offering support to other NB families as they are fighting this disease. They have become buddies with a little 4 yr old boy at their hospital in Lexington who is currently in Cincinnati for stem cell transplant. His name is Cameron Mullis. Please visit him here: www.caringbridge.org/visit/cameronmullis They also had a friend who passed away from this cancer, his name was Collin Poynter. His parents have started and continued a foundation in his honor that is located here: www.collinsclassic.org

Nikki’s Notes: Aleah turned 5 years old yesterday on July 28th! Be sure & send her a birthday greeting via her website! I made this graphic for her to be added to her site!

Please visit Aleah & her brother Josh here: www.caringbridge.org/ky/aleah

2006-07-29T14:42:00.000-04:00

The Amazing Daniel is still NED! [Post #12 2:30 PM] [making popcorn; watching dogma]

On July 23, 2004, when Daniel was 5 months old, we noticed something wrong with his right eye. After several visits to the pediatrician and a pediatric ophthalmologist, we were sent to a neuro-ophthalmologist down at The Children's Hospital of Philadelphia (CHOP). On August 16, 2004 he tested positive for Horner's Syndrome. [Horner's syndrome is a relatively rare disorder characterized by a constricted pupil (miosis), drooping of the upper eyelid (ptosis), and absence of sweating of the face (anhidrosis). The underlying causes can vary enormously, from a snake to cancer.

Because we did not know the cause of his Horner's, we scheduled an MRI of his head, neck and chest on August 30, 2004 to rule out any tumors. We also had blood and urine tests done to rule out certain cancers. The blood and urine tests came out negative and the MRI did not show any tumors, however we were told it did show a swollen lymph node on the right side, the same side as his Horner's. We were told to wait 6 months, and when he was 1 year old, to repeat the MRI and check on the node. He had no other symptoms.

We did not think anything else about his situation for the next 6 months. On March 15th, 2005, (Daniel was now 1 year old) we had another MRI done to follow up on that swollen lymph node. Three days later we got a call from the neuro-ophthalmologist and we were shocked to find out that the lymph node had gotten significantly bigger. A biopsy surgery was scheduled for April 4, 2005. That is when everything changed.

Daniel was diagnosed with Stage 3, non N-Myc amplified, neuroblastoma with favorable histology. His bone marrow scan and bone marrow biopsy came back negative. The MIBG scan did show a little something in the left side of his neck, which bumped his prognosis up from low risk to intermediate risk. Daniel had a central line port surgically placed in his chest through which he received 4 rounds of chemotherapy and as of July 28, 2005 he is NED – No Evidence of Disease! He is currently on the follow up program of having CT Scans and MIBG Scans every 3 months to make sure the cancer has not come back.

On April 5, 2006, almost a year to the day of his initial diagnosis, we learned that there were suspicious looking lymph nodes in the same location of the original cancer site. We are currently undergoing more tests and then we will decide on a treatment plan if necessary. Update: July 25, 2006 HOORAY! Daniel is still NED! And he has reached the 1 year off treatment milestone!

Nikki’s Notes: Yea for the great news on Daniel! He’s still NED!
From his picture, I think he is just the biggest doll baby ever! You’ll have to visit his website to see for yourself! Please visit Daniel at www.caringbridge.org/pa/danielcooper

2006-07-29T14:01:00.000-04:00

Samantha Hughes: 2nd Cancer Fighter in the Family! [Post #11 2 PM] [PS I'm already tired of cleaning!! I can't believe we're having a party during a blogathon! PLEASE leave me some comments!!]

**Samantha’s Family sent me this link an hour ago. Interesting . . .

My brother Louis was born in March 2001. When he was only 18 months old he was diagnosed with a very rare tumor called Pulmonary Pleurablastoma, so rare there were only around 50 cases like it, in the world. After a nightmare 3 weeks of tests, many operations and several visits to intensive care, the tumor was removed and he has been fine since. My mummy was pregnant with me at the time but doctors advised this should not happen again as the odds of having 2 children with cancer from the same parents were the same as lightening the same place twice.

I came into the world in March 2003, and unlike my brother, as a baby, I slept through the night pretty much straight away, I learned so much from him and was walking and talking way ahead of development schedule, but then again, I am a girl!

In the late summer of 2005, I began to wake many times during the night, demanding Milk which I should be growing out of by now. My appetite then disappeared and could no longer eat any foods during the daytime other than yogurt.

Early September mummy and daddy were very worried as I was eating very little in the daytime and waking all night asking for milk. Their biggest concern was that my belly now looked very swollen and bloated.

They took me for a routine visit to the doctors, who sent me straight to the hospital, I then endured countless tests.

On October 21st I was diagnosed with a childhood cancer called Neuroblastoma. It looks like lightening has struck twice in the same place for our family and this is where my battle begins.

Nikki’s Notes: From searching through Samantha’s site, I’ve learned quite a bit about what she likes. She likes Barney & Friends, her doll collection, Cadbury chocolate (as do I), puzzles, and reading!

The one thing that strikes me about Samantha is her 100—watt smile! In almost every picture on her site, she has the biggest, brightest smile on her face! It makes me want to smile as well! Please visit Samantha’s website http://samanthahughes.info to see that smile!

2006-07-29T13:42:00.000-04:00

[I am now part of the Team bspies! Visit them!]

Brave Sydney Marie Dudley [Post #10 1:30 PM]

Sydney was born at 28 weeks weighing 2lbs 14ozs so she was born to fight. She got diagnosed on august 27 2004 with Stage 4 Neuroblastoma. She had six rounds of high dose chemo, 11-hour surgery to remove primary tumor, stem cell transplant, radiation and six months of Accutane.

Sydney will be six in November and is getting ready to start kindergarten. She has lost her high frequency hearing due to high dose chemo but doesn't seem to let that stop her.

The Dudleys

Nikki’s Notes: Sydney’s mom told me: “You couldn't have picked a better inspiration than Christ Thomas. Although I have never met them in person, their story reaches far and wide and they continue to teach us all how to keep up the fight!” I wanted to pass that on to the Thomas Team as they celebrate each day with Christi!

To sum up Sydney right now, I’d like to quote her mother’s latest journal entry dated July 28th. “Went to clinic today and Syd has once again beaten back the beast!!!!! Clean Scans!!!!!!! Everything is fantastic with her. She is up to right under 44 pounds!!!!! She had lost down to 35 at transplant.... She is just really doing soo well.... I am more blessed than I can ever say...”

Sydney’s website has tons of beautiful photos of Sydney and her old sister! Please visit! http://www.caringbridge.org/tn/sydneymarie

2006-07-29T13:09:00.000-04:00

Remarkable Sean Hanson!

Sean (left) with brother Scott, and sisters Heather & Kathleen

Sean was diagnosed on September 9th, 2003 with Stage 3 Neuroblastoma with favorable biology, which places him in an Intermediate Risk catagory. Sean is a triplet and was born on October 8th, 2002. His sisters are Kathleen and Heather. He also has a 7yr. old brother Scott Andrew and a 21yr. old sister Tiffany. Sean had an incomplete resection October 10th, 2003 at Sloan Kettering in N.Y. On top of everything else, Sean lost his Papa-(Daddy) suddenly on May 10, 2004.

Sean is currently doing great and the Doctors feel his residual tumor is beginning to regress! On June 22, 2005, Sean had surgery at Memorial Sloan Kettering to re-implant his left ureter. His next scan for cancer was done in August, showing no recurrent tumor. Amazingly, Friday September 9th, 2005 is 2 years from the date of diagnosis of Neuroblastoma. He looks and feels fantastic. Sean's 2/06 MRI shows "Mild improvement" and No evidence of recurrence and his Renal Scan was good. Urine for catecholamines (secreted by the tumor) is normal. His next MRI will be in August 2006.

Nikki’s notes: This entire family is amazing to me. Sean has the support of his sisters, brother, and wonderful mother! I am deeply saddened for them over the loss of their father and husband. No matter what, they work as a team to defeat all obstacles. I think that is the lesson that I’ve learned in reading up on Sean and his journey with NB.

Please visit Sean & his amazing family: www.caringbridge.org/ma/seanhanson

2006-07-29T12:41:00.000-04:00

Fighting Warrior: Annabelle [Post # 8 12:30ish PM] [need to get up from computer & clean the bathrooms!!!!]

My name is Annabelle Katelynn Obersteadt, and I am 2 years old. I blessed my Mommy and Daddy's lives with my presence on May 22, 2004. I love to dance, sing, and run as fast as I can. Mommy says I run like a little old lady! I don't know about that one.... I also have a bracelet, necklace, and shoe fetish!!! Oh, and I can't forget my big sister, Elsie, who I love to laugh, dance, and play with as well as get grouchy at from time to time!! :o)

On May 31, 2006, the doctors at Vanderbilt Children's Hospital found a mass in my tummy while they were looking at my kidneys. On June 2, 2006, the doctors told my Mommy and Daddy that the mass was a tumor, and it is called Neuroblastoma. To sum it up, it's a big icky monster in my little tummy. My big sister thinks it is a rock. Mommy didn't want to scare her with the idea that monsters could get into people's tum tums. She is not big enough to understand that idea yet.
I know God loves me, and He doesn't make mistakes. I am going to get thru this, and so is my family. Love, Annabelle

Nikki’s notes: Annabelle goes in for blood counts next Monday, and then she’ll start the 3rd cycle of chemotherapy on Thursday, August 3 at 10 AM. Please keep her in your thoughts and prayers! If any “veteran” NB parents want to give Annabelle and her family some support on the start of this journey, I’m sure it would be appreciated!!

Please visit Annabelle!

2006-07-29T12:29:00.000-04:00

we're up to $637 in pledges!! yahoo!!

2006-07-29T12:06:00.000-04:00

Brave Sydney Simms! [Post #7 12 PM] [finished vacuuming, made beds, etc. tacking the bathrooms!]

Sydney was diagnosed with stage 4 Neuroblastoma on January 15 2004. She was 7 years old. She has already had 12 rounds of High Dose Chemotherapy and major surgery. She had her left adrenal gland removed, her main tumor removed and several lymph nodes. She has also had 14 treatments of radiation to her left femur, abdomen, orbits. and skull. She has completed 5 rounds of Accutane. She is now undergoing antibody treatments (3F8)at Sloan Kettering Cancer Center in New York. The family will be making monthly trips there to receive the treatments. She is a fighter and does not let this horrible disease get her down!

Nikki’s notes: Sydney and her mom also make jewelry called Sydlets. Sydlets are bracelets, necklaces, and earrings. They are made with Swarovski crystal beads complimented with a sterling silver awareness ribbon, so they can be worn proudly, and spread the word on pediatric cancer, and the brave warrior children, like Sydney, who fight everyday for their lives.
The makers of Sydlets associate 3 words to their products:
Hope - for a cure!
Inspiration - to get involved and make a difference!
Peace - for all the angels whose suffering has ended.
Our motto: "It's HIP to be aware! Spread the word!"

Here is a picture of them!

Please stop by & purchase one to support her fight!

You can visit Sydney’s Website here: http://www.caringbridge.org/fl/sydneysims

2006-07-29T11:34:00.000-04:00

Micah is NED & a Miracle! [Post #6 11:30 AM] [vacuuming] [ps, i'm on aol im. im me! pookielocksgirl]

NED=No Evidence of Disease

Micah stopped using her legs when she was just 11 months old, causing us to take her to her pediatrician, who quickly sent us for an MRI at a local children's hospital in Memphis, TN. Shortly thereafter, the MRI showed a large malignant tumor in Micah’s torso that had completely wrapped itself around her little spinal column, completely paralyzing her from the waist down. The neurosurgeons cut Micah from the nape of her neck to her tailbone, removing a small piece of the tumor to study. Within 3 days, we were referred to St Jude Children’s Research Hospital in Memphis, TN and the tumor was diagnosed as Neuroblastoma, Stage IV.

The doctors said she would never walk again. Micah's cancer has a 57% survival rate, thanks to the researchers at St Jude and after 5 surgeries, and months and months of strong chemotherapies, Micah not only beat her Neuroblastoma, but is now our walking, dancing little miracle! She HAS used her legs and to this day, those who don't know Micah's miraculous story cannot even tell that she has fought such an amazing battle and WON!

Micah is now 5 and is now a poster child for StJude. She has spoken (she learned the word "Neuroblastoma" when she was just 2 and began helping me share her story to others) to almost 100 groups of people (ranging from 5 people to over 500) and has done photo shoots, met celebrities, shot videos and commercials, traveled across the country to appear at fund-raising efforts, and more so that she can help spread the amazing things that she has been through so that others may not have to go through them. She is truly a fighter!

You can visit Micah here: www.caringbridge.org/ms/micah

Nikki’s notes: What a miracle she is! The doctors said she would be paralyzed and never walk again!!!! Miracles DO happen, EVERYDAY! That’s why I feel so strongly about raising money for CNCF!! I’m also a St Jude Partner In Hope®. I encourage you to become a Partner in Hope Sponsor too! 1-800-822-6344 8 a.m.-4:30 p.m. CST

I was just searching through their online catalog. I think I may buy this: http://shop.stjude.org/GiftCatalog/shop.do?cID=11082

2006-07-29T10:54:00.000-04:00

Imrie is NED! [Post #5 11 AM]
NED=No Evidence of Disease!!!

Imrie’s fight began on Oct. 5th, when the Sherricks found a bump on the back of their 13-month-old daughter Imrie. The usually happy and active baby was visibly in pain, and it was quickly apparent that she was not able to crawl or stand. The couple rushed Imrie to the walk-in clinic at the Monticello Medical Center, where the suspected problem was a septic hip. Imrie was transferred to Riley Children’s Hospital in Indianapolis, where a large mass was discovered in her chest and abdomen. Every parent’s worst nightmare came true when the doctors informed the Sherricks that the mass was, in fact, cancer: Neuroblastoma, Stage 3.

The tumor was pressing into her spine, so they did emergency surgery right away to relieve the pressure. Intense Chemotherapy finally brought her into NED status where she remains today!

Nikki’s notes: Imrie’s mom Carrie shared the following statement with me when discussing Imrie’s time in the hospital. It brought tears to my own eyes. “The sound of parents crying over their dying child is something that you never get out of you mind.” It’s something I personally hope I never have to hear.
Please visit the beautiful Imrie’s website here: www.caringbridge.org/visit/imrie.

[In other news, my boyfriend is hosting a surprise birthday party at our house today! I have to finish cleaning the house in between posts!! Grrr]

2006-07-29T10:36:00.000-04:00

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!

Now, onto:

Stories about Christi from her fans [Post #4 10:30 AM]

Hello,

I do not know Christi personally, but found the link to her site and have been faithfully following her now for a while. I saw your Blogathon link on her site and just wanted to share what an inspiration she is to me. She and her family are such an inspiration and their faith is unbelievable! I can only hope and pray that if I’m ever faced with a similar situation, that I will be the example that the Thomas family has been! Christi and her parents are true heroes! I pray Christi can beat the nasty beast that’s known as cancer!
Bridgette Hough, Alabama

Hello Nikki

I am the mom of Angel Michael who passed away October 21, 2005 from Neuroblastoma. I would first like to thank you for what you are doing on the 29th.
I would like to say we met the Thomas Team in 2002 in NYC. Christi was always reading when I saw her, or snuggled up in her jogger stroller. Her wonderful parents and I became friends. I admire Christi for her art and drawings and for being such a GREAT big sister.

She shared her sister with other siblings at the hospital, my son Anthony being one of them. Those girls are a great team together. Anthony and Shayla spent lots of time in the playroom and RMDH while their siblings were being treated. When Christi came back for a visit I remember her bringing Potato Chips for everyone to taste, but I don't remember what kind, only that they were manufactured in Ohio.
Keep up the good work for Kids with Cancer.

Warmly
Sharon Romano

Nikki’s Notes: Thank you Sharon and Bridgette for sharing those touching words about Christi and her family!!

2006-07-29T09:52:00.000-04:00

Christi Thomas’s Story: My inspiration! [Post #3 10 AM] [I'm all showered! My new Loreal Shampoo smells divine!! Anyway--off to get some grub now]

On September 11, 2002, Christi Thomas was diagnosed with Neuroblastoma – stage IV (the worst of the worst). For a bright, active, outgoing five year old girl that was thought to be perfectly healthy, her family and friends were shocked and stunned!!
From September to December 2002, Christi endured four rounds of intense chemotherapy on Protocol #3891 at Children's Hospital in Columbus. While her tumor shrunk considerably, the cancer in her bone marrow remained. She was given a 10% chance of survival if drastic treatment plans were not made.

Therefore, it was deemed medically necessary to transfer Christi's care to New York City's Memorial Sloan Kettering Cancer Center . This world renowned hospital sees more Neuroblastoma patients each year than any other institution in the world. In late December of 2002, the Thomas Team relocated to the Ronald McDonald House of NYC hoping by the grace of God to save their cherished daughter's life. They lived there for nearly nine months and met the sweetest of folks.

Christi's treatment in NYC included three high dose rounds of chemotherapy from January through March. Unfortunately, the cancer in Christi's bone marrow still did not respond. The oncologists again lowered her odds of survival and declared her disease "refractory" meaning no longer responding to chemotherapy agents. Surgery was cancelled and things appeared dismal at best. In April of 2003, with virtually no chance of survival, Christi was enrolled in an experimental Phase One clinical trial. During this terribly (daily) painful treatment process Christi was injected with two agents - 3F8 mouse antibodies and beta glucan. After the maximum treatment allowed (four rounds over four months) her bone marrow disease was reduced roughly 25%, but not eliminated.

In July of 2003, after finishing the Phase One Trial and all of its required testing, Christi and her family went on her Make-a-Wish Foundation trip to Japan.
Within twenty-four hours of arriving back in NYC from her unbelievable Make-a-Wish dream trip, she was wheeled into the operating room with the attempt to fully resect her tumor, as well as the surround lymph nodes that it had spread. Dr. Lauaglia reported that it was a full resection and that the tumor was active Neuroblastoma. He also inserted a mediport to allow her next treatment to continue.

Next, the decision was made to try a chemo she had not yet tried called Irinotecan. (a phase II study). That low dose chemo attempt was administered for two straight weeks. Because Irinotecan typically does not lower the blood counts very much, its side effects are manageable. Christi was able to attend school (for the very first time) where she thrived in second grade and she also went back to ballet classes after missing an entire year of dance classes too. She received her chemo after school through October of 2003 and as always never complained about the treatments or the side-effects.

Committed to “not going down without an all out fight” and never wanting to look back at not trying something, on November 2nd, 2003 Shayne and Angela enrolled and started their beloved little gal in a very risky Phase I trial at CHOP - being the third child in the USA to ever attempt this dosage. She was injected with the high dose MIBG radioactive isotope which actually made her radioactive and therefore kept her in isolation. Everything that she touched was disposed of as radioactive waste. Two weeks later, this high dose MIBG (internal radiation) experiment was repeated for a second time. With dangerously low blood counts, on January 2nd of 2004 her previously harvested stem cells were transplanted back into her - literally restarting her young life. Sadly, following the scans and tests, it was learned that the high dose MIBG (radiation) did nothing to reduce her tumor burden.

Now facing very low blood counts, Christi no longer qualified for any treatment options - except for 13-cis-retinoic acid. This theory behind this drug is that it matures Neuroblastoma cells. On January 27th, 2004 Christi started this treatment at home where she completed three cycles before returning to CHOP for disease evaluation. It was crushing news to learn that the tests/scans conducted in April of 2004 indicated that the amount of disease in her bone marrow increased and her cancer had progressed while on 13-cis-retinoic acid.

On April 22nd, 2004 Christi started yet another Phase I experimental trial (ABT - 751). In test tubes and in animals, ABT - 751 kills cancer cells. ABT - 751 works by binding to a critical protein in cells (tubulin). In studies, ABT is able to kill cancer cells that are resistant to chemotherapy (exactly Christi’s situation). After one cycle, Christi returned to Philadelphia on May 13th of 2004 (the day after her 7th birthday) for testing. Her oncologist labeled her response as "stable disease with a hint of improvement". After waiting for Christi's blood counts to recover, Christi started her second cycle of ABT (21 days of oral chemo pills with a seven day break before repeating the cycle) on June 3rd, 2004 . While on this amazing drug for over 15 months she enjoyed a tremendous quality of life by going to school full time and taking ballet, piano and karate lessons. She also participated in Girl Scouts and religion classes.

MIBG and MRI scans were conducted in early July of 2005 - after her 15th round of ABT, which sadly indicated that a new spot of cancer was indeed growing in her rib. She returned to CHOP in mid-August 2005 where sadly tests/scans concluded that in just four weeks her disease rapidly progressed with the cancer being spread throughout her entire skeletal system. She immediately began yet another Phase I clinical trial - the Irino/Temador/Cebrex combination of oral chemotherapy agents.
While difficult to swallow and keep down - and not without much nausea, Christi successfully completed two rounds of the yucky tasting chemos and then returned to Philadelphia in late September ‘05. Tests/scans at CHOP indicated that the disease which had spread significantly from her skull to her knees was reduced again to the new area discovered July 05 - a rib (and her bone marrow, of course). Therefore, she completed four more rounds. She also had two weeks of external radiation to the new tumor in December of 2005. Sadly, test results in Philadelphia confirmed that the Irinotecan and Temador chemos were no longer keeping Christi’s cancer stable. Again, the disease had spread to: skull, arms, ribs, pelvis, and legs.

With perfect timing, due to Christi’s progressing disease, the clinical trial the Thomas’s had been waiting over two years for finally opened (Phase II hu.14.18 interleukin-2 Fusion Protein trial) and Christi begin this study on Jan. 9, 2006 at CHOP. The side effects were nasty (high fever, chills, and pain) yet as all later learned Christi’s cancer was rapidly progressing and perhaps that was causing the horrible pain.

Because the pain never really stopped and because a week later “lumps” were popping out Christi’s skull, she flew back to Philadelphia in terrible condition with Dr. Maris gravely worried.

She immediately started the European protocol of high dose chemo (Topotecan, Vincristine, Doxorubicin) on January 31, 2006 which made her terribly sick, so sick that her blood counts didn’t recover to endure a second round. Instead topotecan and vincristine were reduced to 50% of the dosage and she endured that for her second round.

Tests and scans conducted on March 15, 2006 showed that her cancer had been reduced by 90% - definitely worth the hair loss, mouth sores, blood transfusions and other side effects! On March 21, 2006 she will again repeat the TVD combo of very harsh chemos. This will be conducted while in the hospital at CHOP.

The Thomas Team would like to thank all of "Christi's Crew" for their love and support during the most challenging times and also to say thanks for continuing to serve as Christi's tremendous prayer warriors. The Thomas Team believes, "God performs miracles EVERY day. We pray that Christi will be one of them and will be a testament to His work." Thank you for your continued support as Christi continues to fight for her life in this bloody war called cancer.

Nikki’s notes: As I’ve said before, Christi Thomas is my hero. Around ever turn, she has had nothing but bad news, but she keeps going! She gets up, keeps going, and beats all the odds! She has taught me more in her 9 years than I know at 29! Please read Christi's mom's (Angela) post on Christi's site today! July 29th has much significance in their family!

Address for Cards:
"The Thomas Team"
P.O. Box 152
Old Fort, OH 44861
www.christithomas.com & www.christithomas.blogspot.com

2006-07-29T09:31:00.000-04:00

What is Neuroblastoma? [Post #2 9:30 AM] [I'm off to shower after this posts! Maybe that will help me wake up!]

“Neuroblastoma is one of the most common solid tumors of early childhood usually found in babies or young children. The disease originates in the adrenal medulla or other sites of sympathetic nervous tissue. The most common site is the abdomen (near the adrenal gland) but can also be found in the chest, neck, pelvis, or other sites. Most patients have widespread disease at diagnosis.”

Neuroblastoma is the most common solid tumor in children under the age of one and it is more common in boys rather than girls. The tumor is mostly found near the adrenal glands which are above the kidneys. Each year one in every 100,000 children develop Neuroblastoma. In most cases by the time it is detected, the tumor has already spread to other parts of the body. Some symptoms are pale skin, diarrhea, swollen abdomen, chronic fatigue and rapid pulse. These symptoms take time to appear and that is why in most cases the tumor has already spread.

Neuroblastoma is divided into four stages
.
Stage 1: The cancer is localized (hasn’t spread). It is on one side of the body. All visible tumors are totally removed by surgery. Examination of the tumor's edges under the microscope may show some cancer cells. Lymph nodes enclosed within the tumor may contain Neuroblastoma cells, but lymph nodes outside of the tumor should be free of cancer.

Stage 2A: The cancer is localized, but because of its size, location, or relationship to other organs, most but not all of the tumor can be removed by surgery. It is on one side of the body. Lymph nodes enclosed within the tumor may contain Neuroblastoma cells, but lymph nodes outside of the tumor should be free of cancer.

Stage 2B: The cancer is localized, and may or may not be able to be totally removed by surgery. It is on one side of the body. Nearby lymph nodes outside the tumor contain Neuroblastoma cells, but the cancer has not spread to lymph nodes on the other side of the body or elsewhere.
Stage 3: The cancer cannot be completely removed by surgery or it has crossed the midline (defined as the spine) to the other side of the body. It may or may not have spread to nearby lymph nodes,
Or, it is on one side of the body but has spread to lymph nodes that are relatively nearby but on the other side of the body.
Or, it is in the middle of the body and growing toward both sides and cannot be completely removed by surgery.

Stage 4: The cancer has spread to distant sites such as distant lymph nodes, bone, liver, skin, bone marrow, or other organs. But the child does not meet criteria for stage 4S.

Stage 4S (also called "special" Neuroblastoma): In this case, the child is younger than 1-year-old. The cancer is on one side of the body and is localized. It may have spread to lymph nodes on the same side of the body but not to nodes on the other side. The Neuroblastoma has spread to the liver, skin, and/or the bone marrow. However, no more than 10% of marrow cells may be cancerous, and imaging studies do not show bone damage.

Recurrent: The cancer has come back (recurred) after it has been treated. It may come back in the area where it first started or in another part of the body.

Nikki’s notes: That’s the technical jargon I found when researching this beast. To me, Neuroblastoma is a beast that attacks some great little people before they ever get a chance to thrive. It makes me angry that these little ones have to grow up so fast to tackle this beast. I want to help raise money for a cure!

2006-07-29T08:57:00.000-04:00

Why am I doing this? [Post #1 9 AM] Go Yellow Darts! (My Blogathon Team!)

1. I'm doing this because I had been continually inspired by a 9-year-old named Christi Thomas. I found the link to her site one day and have been following her story ever since! She's an inspiration to so many people, including myself!

2. Also, many people I know have been touched by cancer as adults. I think it's even worse to be touched by cancer as a child! Let's raise some money to help find a cure!

Helpful Hints during the Blogathon:

1. I’ve spent the last month doing TONS of research on each of these beautiful fighters so that I can do them justice during the Blogathon. I hope you’ll enjoy the stories, the pictures, and the love that each one brings!

2. I encourage you to post in the comments along with me! You DO NOT have to have a blogger account to comment, so go ahead and post! I do ask that you identify yourself in the post so that I know who I am talking to!!

3. Also, feel free to aol im me! I'm pookielocksgirl

WHAT CANCER CAN NOT DO
Cancer Is So Limited
It Can Not Cripple Love
It Can Not Shatter Hope
It Can Not Corrode Faith
It Can Destroy Peace
It Can Not Kill Friendship
It Can Not Suppress Memories
It Can Not Silence Courage
It Can Not Invade the Soul
It Can Not Steal Eternal Life
It Can Not Conquer the Spirit
Author Unknown

2006-07-28T09:16:00.000-04:00

Please welcome Georgia, Ethan, Erin, and Angel Michael!

Ethan

Georgia & older sister Sydney

Erin

Angel Michael

2006-07-27T11:41:00.000-04:00

CONGRATULATIONS! We have raised $557 so far for our Blogathon! We beat our goal! Keep the sponsors coming in! Let's make some $ to help cure this beast!! PS. If you haven't verified your pledge, please do so now so that the pledge will count!! Sponsor Me!

I changed the commenting policy so that you do not have to be a blogger member to comment!

Also, please welcome Ruth who was just diagnosed in March/2006, Markeira who is NED, and Fighter, Abbie!

Ruth

Markeira

Abbie

2006-07-26T12:46:00.001-04:00

We now have 23 Beautiful NB Warriors in our Blogathon as well as one Beautiful Angel, Naomi! I'm very excited to raise some money for a cure!

We're at $393 out of the $500 I'd like to raise! Keep passing the info on to others so that we can reach our goal! Sponsor Me! If you have sponsored me, but haven't "verified" your account, please do so ASAP so that Blogathon.org will recognize your donation!

Let me introduce our new faces!

Annabelle

Chandler

Daniel

Codey

2006-07-25T22:36:00.000-04:00

Tentative Posting Schedule (so we can all keep track!) I haven't added everyone in yet, so don't worry if you don't see your name up there!

I’m going to use each ½ hour to talk about how I’m feeling as the hours pass by!

9 AM Why I’m doing this?
9:30 CNCF /What is Neuroblastoma?
10 AM Christi Thomas
10:30 Christi Thomas
11 AM Imrie
11:30 Micah
12 PM Sydney Sims
12:30 Annabelle
1 PM Sean Hanson
1:30 Sydney Marie
2 PM Samantha Hughes
2:30 Daniel
3 PM Aleah
3:30 Chandler
4 PM Eden Adams
4:30 Razak
5 PM Christi Thomas stories
5:30 Ethan Smith
6 PM Benjamin Thomas
6:30
7 PM Sarah Smith
7:30 Erin
8 PM Raymond
8:30
9PM Anna O’Connor
9:30 Codey St John
10 PM Josh Powell
10:30
11 PM Connor Gerber
11:30
12 AM Christi Thomas
12:30
1 AM Angel Naomi
1:30
2 AM Georgia
2:30
3 AM Angel Michael
3:30
4 AM Anna
4:30
5 AM Ruth
5:30
6 AM Markeira
6:30
7 AM Dylan Hartung
7:30 Abbie
8 AM Kylie Houtchings
8:30
9 AM: Wrap up

2006-07-25T21:27:00.000-04:00

Please welcome Micah! She is a poster child for St Jude!

Micah

2006-07-24T12:42:00.000-04:00

Please welcome 2 more superstars!!! Dylan & Imrie!

Dylan

Imrie

2006-07-24T08:22:00.000-04:00

Most of you read this blog because you are either a cancer fighter or the parent or loved one of a cancer fighter. For those of us currently unaffected by this beast, I wanted to show you 1/2 the daily chemo dose that Christi Thomas is currently taking. This REALLY gets me in the mood for the blogathon! Let's help find a cure! We have $333/$500 Goal so far! Let's at least reach $500!!

2006-07-23T22:54:00.000-04:00

Please welcome Anna, Kylie, and Razak! Kylie is currently on Hospice & needs all of our love, support, and prayers sent her way! She is not giving up without a fight!

Anna

Kylie

Razak

2006-07-22T18:25:00.000-04:00

As you can see, we have a beautiful new image that includes all of our children! This was created by my dear friend Tanya! She's amazing!

I just wanted to give you all some info on what will happen next Sat, July 29th. I will begin to blog at 9 AM EST and make my final post at 9 AM EST on Sunday July 30th! You can follow along all day & all night. If you make a free Blogger Account, you can comment while I post! That would be fun for me to know people are looking in, rooting for me!

Tomorrow, I will get together a rough list of who & what I'm planning on posting about at what time, so that you can "tune in" while I'm featuring your child! All kids will be featured in at least 2 posts!!!!!!

Love, Nikki

2006-07-21T12:43:00.000-04:00

Hi everyone! One more week to go before the MAIN EVENT! Welcome Connor & Angel Naomi!

I think I have everyone's information for their post! I will send an email out letting everyone know at what time, approx, I will post a piece about their child! I also have 2 wonderful people who are telling stories about some of the children! I'd like to include more stories of inspiration like that. If you have any family or friends that you think would like to include something, please email me or have them email me at pookielocks@yahoo.com !

I would like to take a moment to plug the wonderful Jennifer Lehmann's website entitled, Kids Cancer Crusade. I encourage you to email her and have your child listed on her site as well!

Also, Beautiful Angel Naomi's mom emailed me about the blogathon, and I'd like to post her picture up here for all to see!

Angel Naomi

Connor

PS, my online friend Caryn is blogging for the American Cancer Society. Please check her blogathon site out! Here's the link!

2006-07-20T17:07:00.000-04:00

I'm excited! I've heard back from 2 more families! Josh Powell & Samantha Hughes have joined on! To date, we've raised $279/$500 that I want to raise. I'd like to raise much more than that, but anything is better than nothing!

So far, I'll be writing about 11 wonderful kids! If you're a parent or a supporter, I encourage you to please pass this link around or link this blogathon on your site so that we can raise more money to fight NB!

Samantha

Josh

2006-07-20T12:19:00.000-04:00

Please welcome Sarah Smith, Benjamin, & Raymond! Sarah has recently relapsed & needs our prayers! Raymond continues to be NED! Ben is still NED as well! Keep Benjamin in your prayers--his yearly scan is coming up soon!

Sarah!

Benjamin

*I don't have a pic of Raymond yet, but please visit his cancer tree here

2006-07-19T10:03:00.000-04:00

The beautiful Amanda created a new button for people to use at her site Lovely-Headline. Be sure to check her out!

2006-07-18T09:07:00.000-04:00

We have 2 more wonderful kids in our Blogathon! Please welcome Aleah & Eden!

Today's helpful hint: If you'd like to join in the blogathon & post comments along the way, please sign up for a free Blogger account! Simply go to www.blogger.com!

Eden

Aleah

2006-07-17T13:13:00.000-04:00

I'm still trying to round up Sponsors! So far, I have one WONDERFUL sponsor who has pledged $200!! I'd like to make it closer to my goal of $1000 for CNCF! Please spread the word to help make this possible!

I've decided to blog about Christi every hour on the hour. At the half hours, I'm going to blog about other Brave NB Fighters! So far, Sydney Simms, Sean Hanson, and Anna Banana have been added to the list! Be sure & check out their websites!

Please pass the information in the first post on to all your friends & family. I'd love a link on your site! Let's raise some money to help these brave fighters!

Sean

Anna

Sydney

I've also created some more buttons you can add to your site! Please save one to your server & link them back here! ( http://bloggingforchristi.blogspot.com )

Please link the sponsor button to this web address: ( http://blogathon.org/sponsor.php?blog_id=254 )

2006-07-12T03:48:00.000-04:00

Hello fellow Christi Thomas Supporters! It's time to raise some money in honor of one special little girl! All $ goes directly into the Children's Neuroblastoma Cancer Foundation at the close of the Blogathon!

On July 29, hundreds of bloggers from around the world will put their endurance to the test for charity, blogging every 30 minutes for 24 hours straight. This is the Sixth Annual International Blogathon, an event that creates a worldwide community for a day, serves up fascinating content, and most importantly, raises tens of thousands of dollars for dozens of charities. Bloggers choose the charity and collect sponsorships. At the end of the event, those sponsors fulfill their pledges directly with the charity.

Here's how YOU can help!

A)With the help of fellow Christi Warriors, I'd like to spend my 24 hours of posting sharing information about Christi. I'd love to have you email me your feelings towards her including: your favorite picture of her, why she's touched you so greatly, what she means to you, what she's taught you about life, your fave christi joke, your fave christi drawing, a special memory of time spent with her, etc. Please email me ASAP with these so that I may begin organizing my posts to be used on July 29th! My email address is: pookielocks@yahoo.com Please put "Christi Thomas" in the subject line so that I keep them all organized!

B)Another wonderful way you can help is to place this button on your site: and link it to: http://bloggingforchristi.blogspot.com . I also have this sponsor button for you to use: and link it to this link: http://blogathon.org/sponsor.php?blog_id=254

C)Also, if you'd like to be able to leave comments on the site during the Blogathon, I suggest making a blogger account so that your posts may be viewed! You can find that information on www.blogger.com !