Friday, May 9, 2008 10:00 AM EST

Hi - Thanks for checking in! We are doing well. We are very excited for the start of a wonderful summer full of fun!

Jason is doing very well in Kindergarten. I think he will be sad and miss it when it ends. I know I will. He starts first grade next year. Wow! Besides a recent painful ear infection and ruptured eardrum, Jason is doing great. He has really become Daniel’s big brother – looking out for him and playing so nicely with him. I just love to see it!

Daniel is doing just great! He has finally become just another happy kid! People always ask how he is doing and I am grateful that they do. I am overjoyed to answer that he is doing great!

Daniel is scheduled to see the neuro-ophthamalogist at CHOP this month for a check up on his Horner’s Syndrome. I don’t even know what they are looking at because as far as I know, Horner’s Syndrome has no effect on his vision. You can barely notice that his right pupil is smaller than the left. We credit this doctor, Dr. Liu, as the one who enabled us to find Daniel’s cancer early. He found the Horner’s and told us to come back and get a repeat MRI in 6 months, which is how we found the tumor in his neck. When we returned 6 months later, even he wasn’t aware that he was the one who decided to keep an eye on it. After Daniel presented with the Horner’s they began to study and even go back and recheck other kids who had Horner’s to determine if any of them could actually have a cancerous tumor that was causing the Horner’s. Daniel was one of the kids in the study. I am sure that Dr. Liu’s work may have saved more lives.
UPDATE: And he has! Dr. Liu told me that all of the patients in his study with neuroblastoma who presented with Horner’s Syndrome are alive and well today. He was surprised to see how much Daniel’s Horner’s has improved because he always told patients that it would not improve. He asked to keep studying Daniel and to see him again in 2 years. Oh, and Daniel is famous….he got his picture (well, his eyes), in a pediatric neuro-ophthamology brochure:


Daniel is scheduled to have his last 6 month checkup with Dr. Maris on July 2nd. We will spend the whole morning there getting bloodwork, urine test, EKG and Echo for heart, and hearing tests. We will see Dr. Maris and expect to hear him say that we do not have to return for 1 year. We will, instead, be introducing Daniel to the Cancer Survivorship Program at CHOP. Hooray!

Children's Hospital of Philadelphia
Cancer Survivorship Program

Fifty years ago, most children and adolescents survived only a short time after the diagnosis of cancer. Today, nearly 80 percent of children and adolescents with cancer are cured, thanks to new research and treatment. In the 1970s, when children with cancer began to survive, Anna Meadows, MD, began to question what their quality of life would look like after cancer treatment. She and her colleagues began researching late effects, the long-term side effects of cancer treatment.

In 1983, under the direction of Dr. Meadows, The Children’s Hospital of Philadelphia started the Cancer Survivorship Program, the first of its kind designed to care for and track long-term survivors of childhood cancers.

The Cancer Survivorship Program team is a leader in identifying, treating and preventing the late effects of cancer treatment. Children who survive cancer may experience problems with their heart, lungs and other vital organs; they may experience growth problems, cognitive delay or infertility. Because of their pioneering role in studying and addressing the special needs of survivors of childhood cancer, team members have been instrumental in changing medical practice and modifying cancer treatments to reduce long-term adverse effects. The Cancer Survivorship Program at Children’s Hospital of works with survivors to maximize their health and well-being. The team members — doctors, nurses and psychologists — provide expert care to survivors of childhood and adolescent cancer who are experiencing or may be at risk for late effects of cancer treatment.

Our program provides follow-up care to hundreds of long-term cancer survivors each year. Since the cure rate for newly diagnosed patients is so high, we expect this program will continue to expand. Our newest offering is a Multidisciplinary Cancer Survivorship Clinic that enables survivors to see physicians and nurses from Hospital departments such as cardiology, endocrinology, pulmonary, nutrition and psychology all on the same day.

The Cancer Survivorship Program seeks to:
· improve the health and well-being of childhood cancer survivors by promoting continuity of care
· provide referrals to specialists as needed
· offer psychological counseling
· transition patients to adult care when ready
· educate patients, parents and healthcare professionals about the long-term effects of cancer treatment


SOME GREAT NEWS!

Researchers Find Gene Location That Gives Rise to Neuroblastoma, an Aggressive Childhood Cancer

--First Finding of Origin of a Puzzling Pediatric Tumor—

PHILADELPHIA, May 7 /PRNewswire-USNewswire/ -- Using advanced gene-hunting technology, an international team of researchers has for the first time identified a chromosome region that is the source of genetic events that give rise to neuroblastoma, an often fatal childhood cancer.

The investigators found that the presence of common DNA variations in a region of chromosome 6 raises the risk that a child will develop a particularly aggressive form of neuroblastoma, a cancer of the peripheral nervous system that usually appears as a solid tumor in the chest or abdomen. Neuroblastoma accounts for 7 percent of all childhood cancers, but due to its aggressive nature, causes 15 percent of all childhood cancer
deaths.

"Until now we had very few clues as to what causes neuroblastoma," said pediatric oncologist John M. Maris, M.D., who led the study at The Children's Hospital of Philadelphia, where he is the director of the Center for Childhood Cancer Research. "Although there is much work to be done," added Maris, "understanding this cancer's origin provides a starting point for developing novel treatments." The study team reported its findings in today's Online First version of the New England Journal of Medicine.

Neuroblastoma is the most common solid cancer of early childhood and has long been known to include subtypes that behave very differently. Some cases strike infants but spontaneously disappear with minimal treatment, while other cases in older children may be relentlessly aggressive from the start.

Researchers at Children's Hospital and colleagues in the multicenter Children's Oncology Group have for decades analyzed tumors for characteristics such as amplified levels of a cancer-causing gene and deletions of chromosome material. They used those tumor peculiarities to classify neuroblastoma into risk levels that guide oncologists toward the
most appropriate treatments. "Properly defining risk level helps us to avoid the twin pitfalls of undertreating or overtreating any given child with neuroblastoma," added Maris.

However, little was known about genetic events that predispose a child to developing a neuroblastoma tumor. In roughly half of neuroblastoma cases, the cancer is not discovered until it has spread widely in a patient's body, so understanding how a tumor originates may allow oncologists to design earlier and more successful interventions.

In the current study, Maris's team collaborated with Hakon Hakonarson, M.D., Ph.D., director of Children's Hospital's Center for Applied Genomics, to analyze blood samples from approximately 1,000 neuroblastoma patients, as well as samples from some 2,000 healthy children recruited through the Children's Hospital network. A DNA chip analysis performed at the genome center identified three single nucleotide polymorphisms (SNPs) -- changes
in single bases on the DNA helix. Out of over 550,000 SNPs studied, those SNPs were much more common in patients with neuroblastoma, compared to the controls. The three SNPs occurred together on a band of chromosome 6 designated 6p22.

The researchers repeated the analysis in blood samples from additional groups of patients and control subjects from the U.S. and the U.K., and confirmed their finding that variants in the 6p22 region were implicated in neuroblastoma. There are two genes in the 6p22 region, but their functions are largely unknown.

"We are doing further studies to understand how these relatively common genetic changes translate into increased risk of cancer," said Maris. "Ultimately, they probably cause subtle changes in gene expression during early development, interacting with other genes yet to be discovered. This suggests that neuroblastoma has complex causes, in which a series of genetic changes may occur at different sites to combine into a 'perfect
storm' that results in this cancer."

The researchers found that patients with these at-risk SNPs on chromosome 6 were more likely to develop aggressive neuroblastoma. The initial changes on chromosome 6 in all their body cells eventually led to the genetic abnormalities seen in tumor cells in high-risk forms of the disease.

Because their finding reveals only the first step in a series of molecular events, added Maris, it would be premature to do prenatal genetic testing for the SNPs on chromosome 6. His research team will continue to perform genetic analyses, in search of other gene changes that interact with those SNPs. One data source will be 5,000 tissue samples in Maris's lab -- the world's largest collection of neuroblastoma samples, drawing on
decades of research into the disease by Maris, his colleagues and predecessors at Children's Hospital.

"This discovery lays the foundation for learning how these initial changes influence biological pathways that lead to neuroblastoma," added Maris. "Understanding those pathways may guide us to new and better therapies that precisely target this cancer." Hakonarson added, "This study represents one of many ongoing projects to which scientists at The Children's Hospital of Philadelphia are committed, and we anticipate several comparable discoveries will be made in other common and equally complex pediatric disorders, such as autism, asthma, ADHD and diabetes."

The National Institutes of Health supported the study, along with grants from the Alex's Lemonade Stand Foundation, the Center for Applied Genomics, the Abramson Family Cancer Research Institute and the Institute of Cancer Research, located in the U.K.

Among Maris's and Hakonarson's co-authors were several collaborators from The Children's Hospital of Philadelphia and the University of Pennsylvania School of Medicine; the Institute of Cancer Research in Surrey, U.K.; the University of Birmingham, U.K.; the University Federico II, Naples, Italy; the University of Rome; the Children's Hospital of Los
Angeles; and the University of Florida.

About The Children's Hospital of Philadelphia: The Children's Hospital of Philadelphia was founded in 1855 as the nation's first pediatric hospital. Through its long-standing commitment to providing exceptional patient care, training new generations of pediatric healthcare professionals and pioneering major research initiatives, Children's Hospital has fostered many discoveries that have benefited children worldwide. Its pediatric research program is among the largest in the country, ranking third in National Institutes of Health funding. In addition, its unique family-centered care and public service programs have brought the 430-bed hospital recognition as a leading advocate for children and adolescents. For more information, visit http://www.chop.edu.

SOURCE The Children's Hospital of Philadelphia

For more on this story visit:
CBS3.com Video

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Thursday, March 20, 2008 8:19 AM CDT

HAPPY SPRING!

Daniel is now 4 years old and doing great! He had a wonderful birthday celebration that seemed to last the whole month of February. He had a party with his friends at Chuck E. Cheese, we had 2 separate family get togethers, and he celebrated at pre-school. He continues to talk about his next birthday and I love to hear it. Every child’s birthday is special, but when a child who was diagnosed with cancer has a birthday, another year milestone, it is incredibly emotional.

Another big event is having his annual check up at the pediatrician’s office. To see that he is growing normal and developing normal and that everything seems to be on track with him is reassuring. We weren’t so crazy about having to get 5 shots, but he remained the same brave little boy he has always been. He cried, but took it pretty well. After he calmed down and we left the office, the near mention of him having gotten the shots would start him crying again. Thankfully, that’s it for now. I look forward to Daniel’s next check up with the oncologist in July to further confirm how well he is doing. I know we need to be slightly concerned about the late effects of the chemotherapy treatments, but I don’t see any problems and fully do expect there to be any.

I recently had a scare with my other son, Jason, who is 5. I took him to the dermatologist because he had a red, blood filled mole on his arm that would bleed when it was bothered. I tried to diagnosis it on the internet and then decided it was best left up to the doctor. I thought it looked like a pyogenic granuloma and when the doctor saw it, he said that was what it was, but it needed to come off. Jason got the bravest kid of the day award for lying still while the doctor numbed his arm and removed it. He was terrific. Usually, if nothing is found, you don’t hear anything else back from the doctor about it. Well, he called.

He told me that it was not a pyogenic granuloma, that the dermapathology report came back as a Spitz Nevus. He was going to consult with someone and get back to me the next day.

“The Spitz nevus is a fairly common nevus that has its onset most commonly in childhood. In fact, approximately three-quarters of patients are younger than 15 years. This melanocytic proliferation is benign; however, the histologic appearance may at times be difcult to distinguish from melanoma. Indeed, there are a few cases where the most experienced dermatopathologist has called a lesion a benign Spitz nevus but the lesion went on to metastasize.”

“A Spitz Nevus can be difficult to distinguish from melanoma in children.”

“There have been several reports of lesions originally misdiagnosed as Spitz moles in children, only later discovered to be metastasizing melanomas.”

“Differentiating Spitz nevus from malignant melanoma is difficult and controversial.”

“Although the diagnosis of most nevi and melanomas is straightforward, when it comes to evaluating Spitz nevus, its variants, and a few other borderline melanocytic tumors, the differential diagnosis can be vexing.”

That’s all I had to read and I freaked out. I think it just brought back all my feelings and fears of what I had gone through with Daniel. I started doing research and reading a lot of scary things. I had a restless night and immediately felt stressed out. I do not miss that.

It wasn’t until the next day that he told me that it is a classic, compound Spitz Nevus which is a benign condition and that he called a doctor at Memorial Sloan Kettering to consult about whether or not to excise the area because Jason is only 5. I did not know if it was a typical or atypical Spitz Nevus or that the consult wasn’t about the pathology report until the next day, which I’m sure fueled my anxiety about the situation.

Even so, as I have read and as the dermatologist has said himself, “there is no reliable way to say without fail.”

On the positive side –

“Melanoma in children is relatively rare.”

“It is much more common for a child to have a totally benign Spitz Nevus than to have a melanoma”

I just can’t take that chance. On the recommendation of the dermatologist and a dermatologist from Sloan Kettering who specializes in diagnosis, treatment and prevention of cancers of the skin, Jason is going to the dermatologist tomorrow to have the area excised. I believe he said he has to cut 5 mm in each direction and cut all the way down through all layers of his skin. He will have stitches inside that will dissolve and stitches on the outside that will have to be taken out later. His scar will be about an inch and a half long. I hope he can handle this and isn’t traumatized. If he is anything like his brother Daniel, he will do fine.

I pray that Jason gets through the procedure okay and that nothing new shows up on the pathology report.

Jason did great! He was given 3-4-5 (i don't know exactly how many, I couldn't watch) numbing needles to which he calmly said "ouch" and "that hurts" and then he laid still the entire procedure (about 30 minutes) and watched a movie. What a brave boy! He gets his stitches out in 10 days. I am so glad that is over.

The stitches are out! It didn't bother him at all, not as much as the peppermint smell the glue had. He does not like peppermint. The doctor will need to see him in a year to do an all over body check.

Thanks for checking in!

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Sunday, January 13, 2008 10:30 AM EST

On February 10, 2008, Daniel will be turning 4 years old!
HAPPY 4th BIRTHDAY DANIEL!



Hope everyone had a great Holiday and a Happy New Year. We had a very enjoyable Christmas and an uneventful New Year’s. Jason exclaimed that this was “the best Christmas ever”…again. He said the same thing about last year’s Christmas. I guess Santa is doing things right! Daniel really got the idea of Christmas this year, unlike last year when he woke up like it was any other normal day. He ripped through all the presents with so much excitement. He never really expressed to Santa what he wanted, so Santa had to guess at what would make him happy and again, Santa did a great job. They both got 2-wheel Razor scooters and were happy about them. Daniel is under the impression that when it snows, it will be Christmas again. I have told him that that is not the case and we have been starting to focus on his upcoming birthday in February. He will be turning 4! Wow!

We started a new Cooper Family tradition this year. A package came by express mail from the North Pole. Inside was a book about the tradition and an elf. The book is called The Elf on the Shelf – A Christmas Tradition. The tiny elf comes into your home, usually around Thanksgiving and he sits on a shelf and observes the kids. Then at night, he flies back to Santa and reports if they have been naughty or nice. Each morning when the kids wake up, they run downstairs to see where the elf is hiding next. The kids would jump out of bed and race downstairs to see who could spot him first. It was a lot of fun and all we had to say was “he’s watching” and they would try to be on their best behavior. We named our elf, Happy. The name came up about 3 times when we opened the box….Jason said he looks happy. Daniel said that he was happy to get him. And Jason said that he was happier than happy. So – we named him Happy the Elf. I would highly recommend this tradition. Can’t wait for next year!

Once again, I am feeling quite blessed and grateful. Today I am still recovering from an emergency surgery on January 9, 2008 to remove an ectopic pregnancy and my right fallopian tube. On Monday, I had extreme pain in my abdomen, which made me nauseous, and I felt like I was going to pass out. It subsided after about 2 hours, but I was left with a very tender abdomen and what I described as discomfort for the next two days. I kept trying to diagnose myself on the internet and finally decided to call a doctor. I decided to take a pregnancy test that immediately came up positive. Something didn’t feel right, so I made an appointment with a fertility specialist who I saw when I was pregnant with Daniel. He told me to come right over and within an hour of seeing the ectopic pregnancy on the ultrasound, I was scheduled for surgery in the OR. I had already began to bleed and if it had ruptured it could have been life threatening. Apparently, even though I had a period in December, I was already pregnant since November 29th. The pregnancy was 6 weeks along. I am recovering just fine with the help of my husband and I go back for a checkup in a week. I caught this just in time. This only confirms what I already know, - don’t let anything go, always check it out if it doesn’t feel right. I know that Daniel is doing as well as he is today because I didn’t miss a subtle sign and I didn’t stop following through when something just wasn’t quite right.

I will update again after Daniel’s oncology appointment on Wednesday, January 23rd. I expect to report continuing great news.
UPDATE: January 23, 2008 - Another great check up! Daniel is now 30 months off of treatment and seems to be doing just fine. This visit was easy – we saw the doctor and gave a urine sample. We don’t expect the urine to show anything as Daniel never had a positive urine test, but it is a cheap and easy test, so why not. Results of the urine test are due back late next week.

Dr. Maris had some very encouraging words for us. He said that he has not seen any kids who followed the protocol that Daniel did (A3961) who have relapsed past 30 months. He says “never say never”, but he has never seen it.

Our next appointment will be in 6 months – July 2008. This will be a long day because in addition to seeing the doctor, Daniel will have a thorough check of his thyroid function, kidneys, liver, bloodwork, urine, heart tests and hearing tests. When Daniel is 3 years off of treatment, he may be able to graduate to yearly appointments with his oncologist and at that point we will talk about him being benefited by being seen by The Cancer Survivorship Program at CHOP.

This was forwarded to me the other day and it fit right in with how I am feeling. Thought I would share it.

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Thursday, November 22, 2007 8:00 AM EST

Season's greetings! I hope everyone has a wonderful holiday. We will be spending Thanksgiving at my my sister’s house with some of my family. I woke up this morning feeling extremely grateful for a lot of things. Last night I asked Daniel what he was thankful for. He said he was thankful for medicine for Jason. Jason takes allergy medicine every night. I thought it was ironic that Daniel would be thankful for that for his brother. Then, this morning, I asked Jason what he was thankful for. He said he was thankful for Daniel’s doctors that helped his cancer. My heart melted. What a wonderful way to start Thanksgiving. We have a lot to be grateful for and at the top of my list today is health and my family. My sister was diagnosed with breast cancer in August. She has already undergone some biopsies and surgeries. She has another surgery coming up this Monday and then on December 6th she will have the big surgery to hopeful ensure that the cancer will not be coming back. After my experience with Daniel, I can feel confident that she will beat this. Please keep her in your prayers. It will be a rough holiday this year.

The boys are doing well. They both love school. Jason was evaluated for Language testing in Kindergarten and he came out high above his range level – I was told that he was at the level of a 7 year old as far as language goes. I am so proud of him. Daniel is so excited to get to school, that he is still insisting on sitting in the car 10 minutes before it is even time to leave.

We are really looking forward to Christmas this year and have already started the countdown....16 days to go!

Daniel’s next oncology visit is set for January 23rd. This will be the first time he will be in for just seeing the doctor and having his urine checked. It should be a quick, no big deal visit. However, I have to admit, it still brings up a lot of fear every time I set the next appointment. Especially after knowing about 4 kids who have relapsed after some time and reading that they were otherwise healthy and that they thought they were moving on to 6 month checkups, only to be told of relapse, or that they went from moving into normal life to planning a memorial in less than a month. This disease is so scary! Thankfully, I don’t think Daniel could have gotten a better prognosis. But we never stop praying for his continued good health.

Check out the new photos!

Neuroblastoma Expert Reviews Progress And Challenges In Fighting Difficult Pediatric Cancer

ScienceDaily (Jun. 25, 2007) — Childhood cancers are fortunately rare, but among them, neuroblastoma is a special case, accounting for 7 percent of all childhood cancers, but 15 percent of childhood cancer deaths. It typically occurs as a solid tumor in the abdomen, but also in the neck, chest, and pelvis, developing in the network of the body's sympathetic nervous system.

Neuroblastoma is what physicians call a heterogeneous disease; its name includes subtypes of disease that behave very differently. Some cases strike in infants, but spontaneously disappear with minimal treatment, while other cases in older children may be relentlessly aggressive from the start. So precisely defining a given patient's risk level can help oncologists design the best treatment, avoiding the twin pitfalls of undertreating or overtreating any given child.

Better treatments may be on the horizon, but better understanding of neuroblastoma's precise biology can guide physicians to the best choices among possible options.

John Maris, M.D., of The Children's Hospital of Philadelphia, describes the current status of neuroblastoma treatment and trends for the near future, in the June 23 issue of the British journal Lancet. Maris is among the world leaders in neuroblastoma research, with a lab holding tissue samples from 5,000 patients--the world's largest sample collection for the disease.

In his paper, Maris reviews new approaches to treatments for a particularly challenging set of patients--children whose neuroblastoma has relapsed in an aggressive form. One particular technique being used and studied at Children's Hospital employs radioactive isotopes that zero in on neuroblastoma cells to selectively kill those cells with radiation. Other tools include retinoids--biological molecules that hone in on cancer cells, angiogenesis inhibitors that cut off a tumor's blood supply, and tyrosine kinase inhibitors that interrupt a critical step in the tumor's growth process.

"These approaches are targeted therapies--aimed in highly selective ways at cancer cells, but sparing healthy cells," said Maris. "But in order to best guide us to the most appropriate treatments, we need greater understanding of the abnormal biological events that give rise to neuroblastoma." One crucial technique for identifying biological pathways is through studies of the gene mutations and variations involved in different types of neuroblastoma, and Maris's team is calling on the sophisticated gene-hunting facilities at the new Center for Applied Genomics at Children's Hospital to advance that knowledge.

"Our goal is to match the most appropriate treatment with precise molecular targets in biological pathways, so we can intervene to stop neuroblastoma in its tracks," said Maris.

Support for the paper was provided in part by the National Institutes of Health, the Children's Oncology Group, and a variety of private foundations and organizations. In addition to his position at Children's Hospital, Maris is on the faculty of the University of Pennsylvania School of Medicine. Maris's co-authors were Michael D. Hogarty, M.D., of The Children's Hospital of Philadelphia and the University of Pennsylvania School of Medicine; Rochelle Bagatell, M.D., of the University of Arizona Health Sciences Center and Steele Children's Research Center of Tucson, Ariz.; and Susan L. Cohn, M.D., of Comer Children's Hospital and the University of Chicago.

Adapted from materials provided by Children's Hospital of Philadelphia.

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Thursday, October 4, 2007 3:00 PM EST

WHAT AN AWESOME DAY IT WAS! – The 2007 Parkway Run/Walk for Children’s Cancer Research took place on Sunday, September 30, 2007 under beautiful blue skies, warm temperatures, and plenty of friends and family...The Friends of Daniel Cooper Team had 77 members this year! Our online Fundraising Page raised $712.00!

To check out photos of the big day from the Evite.....Click Here

There's still time to DONATE!....Click Here

To Invite others to donate.....Click Here



More Photos from the 2007 Event:

And check out this awesome video from the 2005 Parkway Run/Walk featuring Daniel when he was going through treatment for neuroblastoma:
Video

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Thursday, September 6, 2007 7:00 AM EST

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Please keep Lydia Frederick and her family in your prayers. Her cancer has spread so much and so fast that treatment has been stopped. She will be leaving CHOP shortly to go home on hospice care. Lydia is 3 years old.

Lydia passed away Saturday, September 8th at 4:45 am at CHOP while sleeping with Mommy and Daddy.

http://www.caringbridge.org/visit/lydiaf

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WE DID IT!!! FRIENDS OF DANIEL COOPER TEAM EARNED A TENT ON THE PARKWAY!

THANK YOU to everybody who registered to be a member of our team! It will be an awesome day!

MESSAGE TO TEAM MEMBERS: Meet at the tent to pick up your Parkway t-shirt, team t-shirt, and thank you gift. I will be there at 7:00 am.

Wear something light that you can just put your team t-shirt over. I'm not sure where you can change, except in a bathroom at the Four Season's Hotel.

I am hoping to be able to organize a group photo with as many team members as possible. I could probably use some help accomplishing that task. Hopefully, before the start of the race.

IT’S ALMOST HERE! – Sunday, September 30, 2007 – The 2007 Parkway Run/Walk for Children’s Cancer Research – Join the Friends of Daniel Cooper Team!

Click Here to View or Reply to the Evite
Click Here to Donate
Click Here to Invite Others to Donate

The Family Fun Walk

One of the most beautiful things about The Parkway Run is seeing the number of families and friends that come out in support of kids suffering from or recovering from cancer.

Many groups design banners or flags to help them stick out in the crowd. Others create their own T-shirts. And if you “Team Up” to cure cancer and sign up more than 75 people for your team, you can start the day with your own tent on The Parkway.

Families and friends have lots to do on Race Day. Before the start of the race, kids can hang out at the Children's Tent where they can play games, have their face painted and ham it up with clowns.

As for the race itself there are several options. Some choose to show off their athletic prowess by running the 5K Race. Most families and friends enjoy the Family Fun Walk, proudly parading right up the middle of The Benjamin Franklin Parkway from the Four Seasons Hotel to the Art Museum. And if that walk gets a bit long, just cross to the other side of the street and head on back to the Four Seasons where a buffet breakfast awaits you.

2007 Family Fun Walk Details

When: Sunday, September 30, 2007 - Rain or shine

Where: Four Seasons Hotel, One Logan Square 18th St. and Benjamin Franklin Parkway Philadelphia, PA 19103

Time:
7:00 am - Registration Opens
8:30 am - Family Walk and Run Begins
9:45 am - Award Ceremony and Raffle Drawing

Course: Up the middle of the Benjamin Franklin Parkway to the Art Museum and back

Parking: The closest parking is located on 18th and Cherry Street, one block from the race start.

2007 Race Details

Course: U.S.A.T.F. certified 5K down the Benjamin Franklin Parkway and along West River Drive. Water stations at the one and two mile mark

Timing: Chip timing will be provided

Results: Results will be posted on www.parkwayrun.com

Early Race Packet Pick-up: Pick up your Race Packet in advance and sleep in a bit on Race Day. Early pick-up is available for anyone who has registered by 9/23. You can pick up your Race Packet at the Four Seasons Hotel on Thursday, 9/27 and Friday, 9/28 from Noon - 6:00pm and on Saturday, 9/29 from Noon - 2:00pm

Great Prizes: The Parkway Run is famous for the prizes offered to winners. The Top Male and Female Runner will each receive a trip to another Four Seasons Hotel complete with transportation. We also offer male and female prizes in 11 different age categories with 1st, 2nd and 3rd place prizes being awarded in most categories. Prizes include gift certificates for dining at many of Philadelphia’s finest restaurants including Davio’s, Estia, Fork, The Golden Pheasant, Lacroix’s, The Public House and Siam Cuisine. Others will win gift certificates for stays at some of Philadelphia’s finest hotels including Hyatt Penn’s Landing, Inn at Penn, Loews, Marriott, Ritz Carlton, Westin and of course, The Four Seasons.

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Tuesday, July 17, 2007 10:00 AM EST

Please keep Daniel in your prayers as he goes in for scans at CHOP tomorrow. As usual, even though I am feeling pretty optimistic about getting good results, there is never a time that worry doesn’t creep in. As I said before, if all goes well with this scan, it may be his last. This is because the risk of radiation exposure becomes greater than the risk if his cancer coming back. WOW! How great to reach this milestone. It brings me to tears every time I realize how fortunate we are.

I started worrying about the fact that they were going to scan Daniel’s neck as usual, but also scan his chest this time. We haven’t looked there since the beginning of this ordeal. And because it could be the last time we check inside his body with a picture I thought it would be even more comforting to me if we also checked out his abdomen, since the majority of neuroblastoma starts there. I made a call to Dr. Maris and was sure he would come back and say that there is no need to do that, it would only expose him to more radiation, and the likelihood of it showing up there is very small….but instead, he went ahead an ordered a CT scan of his abdomen also.

When I mentioned to Daniel that he was going to the hospital he was acting very scared. He is mostly afraid of the “pinch” from the IV they need to give him for contrast. We have been practicing holding very still so that he can get his picture taken without having to have yucky medicine. He hasn’t been sedated in so long, I am hopeful that he will be able to do it again. I think the total time under the scanner should only be around 15 minutes. And we are fortunate to have Melanie from Child Life Services meeting us there again. She has been there for most of Daniel’s scans and she is wonderful with him.

The schedule tomorrow is to arrive at 8:30 (I was told they have a wonderful new sedation unit), CT scan of neck, chest & abdomen at 9:30, heart test at 11:00, appointment with Dr, Maris at 12:00, and then hearing test at 1:30. I will update with the results tomorrow. Thanks for checking in!

Daniel and Jason’s PopPop, Joes’ dad, passed away on June 26. We will miss him.

UPDATE: 2 years NED! Daniel had a great checkup and was a perfect patient! We documented our visit, since this was to be our last scan, unless something comes up that is concerning in the future. Otherwise, we see Dr. Maris in 6 months (January) for an office visit and urine test. They will continue to check his urine for the next couple of years, but will not continue to do routine bloodwork. We will keep a check on any late effects he may have as a result of his chemotherapy such as his heart and hearing, but for now everything looks great!

NEW PHOTOS IN THE PHOTO GALLERY!

On to the next charity event……………..

SAVE THE DATE – Sunday, September 30, 2007 – The 2007 Parkway Run/Walk for Children’s Cancer Research – Join the Friends of Daniel Cooper Team!
Details to follow. In the meantime, here are photos from the last 2 years:

And check out this awesome video from the 2005 Parkway Run/Walk featuring Daniel when he was going through treatment for neuroblastoma:
Video

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Tuesday, June 5, 2007 9:50 PM EST

LemonAid Children's Festival
hosted by Friends of Daniel Cooper
to benefit Alex’s Lemonade Stand
June 2, 2007 - Malvern, PA

To date, we have raised $7,470.50 and with a pending contribution from Johnson & Johnson, by September our total should be over $15,600.00!

Check out the day!

If you missed it - it's not to late to donate!

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Wednesday, March 21, 2007 9:00 PM EST

Daniel had his Oncology follow-up appointment today with Dr. Maris. We moved it up from April 4th because the pediatrician was concerned about very tender, swollen lymph nodes on the left side of Daniel’s neck. He was in a lot of pain for 2 nights so we started him on antibiotic and moved our appointment up 2 weeks. The good news is….it was nothing other than normal kid stuff – fighting of infections. The nodes in Daniel’s neck seem to really swell up and because they are located in his neck, it causes us to freak out a little. Dr. Maris says that this will happen, but as time passes we can hopeful freak out a little less.

Daniel’s next set of tests are scheduled for July 18th. He will have a CT scan of his neck and also of his chest (9:30). I guess because we haven’t looked there in a long time. And then we need to have his heart (11:00) and hearing (11:30) checked. He will see the doctor (12:00) and have bloodwork done at the clinic. When all goes well that day, Daniel won’t be getting any more scans and will graduate to seeing the doctor every 6 months. The heart and hearing tests will be repeated again 2 years out.

Planning for the 3rd annual Friends of Daniel Cooper Alex’s Lemonade Stand is well under way. This event will be bigger and better than ever! We have moved the location from a small driveway to right around the corner in a community park – Burke Park, Warren Avenue, Malvern, PA.

Check back often as we add to our events list. We have added lots of fun and exciting events! Please check the website for more details:
LemonAid Children's Festival
hosted by Friends of Daniel Cooper
to benefit Alex’s Lemonade Stand

Free Entertainment all day!

» DJ Lars

» Happy Heart Clown n' Stuff

» Stacey’s Face Painting

» Karate Demonstration

» Band: Just Add Water

» Makin' Music Rockin' Rhythms

» The Comedy Magic of Steven Black

» Storytime by Barnes & Noble

» Castle Moonbounce

» Chair Massages

» Fire Truck Rides

» Fire Prevention Demonstration

» Alex's Lemonade Dance Performance

Lemonade (of course!) by donation
Games for Kids with prizes
Baked goods
Food: Hot Dogs, Hamburgers, Pizza, Hoagies
Raffle Items
Yard Sale by MOMS Club of Malvern
Candy Stick Lemons
Special appearances by:

» 76er's Mascot HIP-HOP

» The Chick-Fil-A Cow

» Mr. C from Commerce Bank

» Sparky, the Fire Dog
Alex's Lemonade Stand Merchandise will be available
Vendors-Mary Kay, Discovery Toys, Market Day Gourmet, Creative Memories, Silpada Designs Jewelry, Tastefully Simple, Premier Designs Jewelry, Pampered Chef, Juice Plus, Big Yellow Box, Commerce Bank, OoglesNGoogles, The COAD Group, Judy's Gifts, The Longaberger Company, Jockey Person to Person, Canine Creature Comforts, Taryn's Closet Boutique, Flower Cards by Judy, StarBooks4U, Cute Loops, Makita, Home Cooked, My Baby Dragon, Arbonne, Tupperware, Quad Craft Corner, Beijo

CLICK BELOW TO SEE OUR EXPANDING LIST OF RAFFLE ITEMS. (contact me if you see something you are interested in)

WE'VE ADDED A SECOND BOOK OF RAFFLE ITEMS! - SEE BELOW

Cool Slideshows

Contact me at email below to purchase raffle tickets. You do not have to be present to win. Winners will be notified by phone.

Get Your Own!

PLEASE SIGN DANIEL'S GUESTBOOK !
WE WOULD LOVE TO KNOW YOU STOPPED BY !

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Thursday, March 1, 2007 3:00 PM EST

Last Friday night, February 23, 2007, around 6:00 pm, Jason attempted to stand on a Big Wheel inside the house and fell off and broke his wrist on his right hand. He actually was able to fall asleep for about an hour with ice on it, but woke up in a lot of pain. We took him to the ER where they x-rayed it and told us he had a buckle fracture. They gave him Motrin, splinted it and put it in a sling. We were home by 10:00 pm – not bad. He slept comfortably the rest of the night and on Monday we took him to the Orthopedist and he now has a cast on. He choose red, his favorite color. He will have another x-ray in a week and they expect the cast to come off in 4 weeks and for him not to have any further problems. We had to cancel indoor soccer and swimming, but he should be back to normal by the time t-ball starts.



Thought I would share this with everyone. Below is a video of Daniel reciting The Littlest Soldiers Poem for a project we are helping out with for Kids Cancer Crusade.

If you read the poem first, I believe you will be able to make out most of what he is saying. (But, if not, I've added subtitles.) Daniel did an excellent job!

The Littlest Soldiers

The medals on our chests
Are broviacs for meds
Helmets won't stay on
Cause no hair is on our heads.

Our weapons of destruction
We take every day
We fight the battle within us
While we struggle on to play.

We fight with honor and courage
No Marine could do as well
We are only children
Living in this hell.

So bring on the medals
The purple hearts of wars
The gold cross, the silver star
To place upon our scars.

For we are the children of cancer
No one has fought so hard
But every day we struggle on
Our LIFE is our REWARD!

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Saturday, February 10, 2007 10:00 AM EST

HAPPY BIRTHDAY DANIEL! You are 3 years old today! Hooray! We love you so much and wish you the best birthday yet!

Daniel celebrated his 3rd birthday at Chuck E. Cheese with some friends and had a wonderful time. Thank you to
Team Cancer Sucks
Kids Cancer Crusade
and
Coins4Kids
for remembering Daniel on his birthday with e-card greetings and surprise packages.

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