A Child Needs You

Chase's Story

2008-11-16T09:07:00.006-05:00

Alveolar Rhabdomyosarcoma is an uncommon and agressive cancer that affects about 70 children each year. This is Chase's story. He was diagnosed July 8th, 2005 with cancer at the age of 15 in the right sinus cavity. This is his story of what he has endured this past year.

Below is the story of Chase's disease:

"Well this story of mine began on June 17th. I had just gotten back from Bible camp where we had spent a week on the riverboat. There was a mosquito like bite just underneath my eye that my parents noticed and asked me about. I told them that it didn't hurt and it was just some kind of bug bite.
That Monday, I called my mom at work to ask if I could go and see the doctor because my nose was all stuffed up and the "bite" was starting to hurt. So I went down to see Dr. Hasselhof and he looked up my nose and pushed on my sinuses. They hurt and my sinuses were plugged so he started to treat me for a sinus infection. 1000 mg of Amoxicillian 2x a day. Talk about horse pills!!! Yikes.
I had just started my new job at Trelay roging. That's where you cut down the taller corn stalks. I would go to work, come home and just sleep till the next morning. My parents started to get worried about a week after I started my job because I was slept so much.
Anyway, my eye started to swell up so another doctors appointment was scheduled for that Friday, July 1. When I got in to see Doc H. he noticed that my eye had displaced so he me to Boscobel to have a CT scan done as the scanner and radiologist were there that day.
My mom got the call in the afternoon at work to come down to the doctors office to find out about my scan results. Doc gave her the bad news that I had a tumor growing and there were 4 different possibilities as to what it could be. At this point in time he did not think it could be cancerous but he couldn't be sure without further testing.
We were to leave up North to visit my Grandparents but we had to nix that so my mom called my buddy Davis to go to the Drive In. She thought I might need a friend to talk to. We saw Batman The Beginning! Great movie and we had fun.
It was a very long weekend! Finally Tuesday arrived and we went to Madison to the UW for a MRI and another CT scan. My neighbor Nub went with us, plus Grandma Minnie, Uncle Jason & Aunt Heather showed up for support. That was really neat. Because I was wearing braces the tests came back inconclusive so they set up a biopsy for that Friday.
By Thursday, my tumor had grown quite a bit and my mom went in to talk to Dr. Hasselhof about her concerns on the change in my face. It was now all swollen, my right eye was almost closed and my face drooped. You thought that I had had a stroke. On Friday when we went to see the specialist she expressed her concerns with that doctor as well. He must have had his concerns to because he told my parents on Tuesday that he was not going to do a frozen section biopsy because those are unreliable. Well he did do a frozen section biopsy, twice. To confirm what he was looking at.
He called my parents back and confirmed their worst fears. The tumor was cancerous and was very fast growing. I needed to be admitted to the hospital immediately for further testing.
My dad gave me the news. We were all crying and very scared. I was moved up to the Pediatric Hematology/Oncology ward. Before long the waiting room was full of friends and family giving us their support. I don't know how my we would have fared if we didn't have the support that we did.
I got some really cool handheld games and stuffed animals, magazines, and lots and lots of candy!!
The next morning, my braces were yanked off, literally by a doctor that was upset at being made late for his trip to Chicago. I don't recommend this doctor to anyone. He was not nice. This got the ball rolling and over the course of the next few days I had more MRI's, CT scans, PET and Bone scans, x-rays, bloodwork, eye exams...you name it. It was done. "

Talking with Your Child about Cancer

2008-11-14T17:10:00.005-05:00

Perhaps the hardest news you will ever have had to face is to learn your child has cancer. The first difficult step you will have to take is telling your child the news. As a parent, you will have to think about how to face this reality and inform your child of his or her disease.

There is never going to be an easy way to tell your child he/she has cancer. Many questions run through your head such as: what should I tell my child, who is the best person to say it, how should I say it, when should I inform my child of the situation? Although facing this reality will be difficult, it may help to learn how other parents have dealt with similar situations and what their recommendations are.

The following article will guide you on how to comfront this difficult truth and how to approach your child regarding the disease he/she faces. You will see the recommendations from the National Cancer Institute and National Institutes of Health. These guidelines will give you a better sense on what is appropiate based on your child's age and experience of people who have suffered through this situation.

Please click here to learn more information on the guidelines on how to talk to your child about cancer.

Fuller Goldsmith - Acute Lymphocytic Leukemia (ALL)

2008-11-14T16:01:00.000-05:00

This is the story of Fuller, who was diagnosed with ALL a year and half ago.

Monday, April 30, 2007 started as any other day. I knew Fuller had not been feeling well or acting like himself, but I had valid reasons behind all of his behavior. However, Leukemia had crossed my mind several times in the last few weeks, and I of course had looked up the symptoms on the internet, so I knew what I knew but didn't want to know it.
He had been diagnosed with strep and I was supposed to wait one more day to do a recheck, but I knew I had to get him to the doctor that day.

When Fuller's pediatrician, Dr. Phil Phillips, came in with his suspected diagnosis, I was in shock, although not completely. It was if I had this horrible nightmare that really came true - no waking up out of this one. But at the same time Phil said those words to me I never wanted to hear ("WBC high..leukemia...go to Children's) a sense of peace and calm came over me like never before. I knew from that moment that Fuller would be healed of this disease.
Now I always knew that we saw the BEST pediatrician in town, but I am overwhelmed with the love and care Phil and his office have given my child throughout this ordeal. I am and forever will be grateful for their devotion to Fuller and our family.

We are now in the hands of the best Hematology Ongology group that has every means to make Fuller as comfortable as possible during this horrible time. I am so thankful for the knowledge and the love that comes from Children's Hospital! If you believe me when I say that my mother's instinct told me Fuller was sick, believe me also when I say that I know God has a purpose for this fight we are fighting - to show me, to show you, and more people than we can imagine the power of prayer.

Pray for Fuller and watch your faith grow as he answers those prayers!

Abby Fasnacht - Leukemia

2008-11-07T13:49:00.004-05:00

For this week, we are going to share the stories of Abby and Memphis.

Abby is young girl who was diagnosed with Leukemia, altough afflicted with this terrible disease she has been able to make incredible progress.

On March 19th, 2003 our daughter Abby was diagnosed with Acute Lymphocytic Leukemia (ALL). She had suffered two bouts of pneumonia in about five weeks, and was also showing periodic signs of limping. After the second round of antibiotics for pneumonia, we felt that she was just not bouncing back like we thought she should, and seemed very listless and unenergetic.

We took her to her pediatrician, who told us she had an enlarged spleen and sent us to Children's Medical Center in Dayton for blood work on the 18th. After the blood work was done, he talked to us over the phone there in the laboratory lobby at Children's, and gave us news that we were just not expecting - Abby showed signs in her blood of some sort of cancer.

An oncologist came down to the laboratory area and talked to us further. He said that he believed it was probably ALL, but we would need to come back the next morning for more tests, and to be admitted if it was ALL to begin the work needed to treat her with chemotherapy.

We came back on the morning of the 19th, and Abby went through a bone marrow aspiration. The lab work on her bone marrow sample confirmed that it is ALL, and that she has subtype "precursor-B". If you hit the link under "links" to the Leukemia and Lymphoma Society, you'll find a very helpful article on leukemia in general, and the different subtypes. If there can be good news about this, it is that this is the most common type of childhood leukemia, with the best prognosis. 99% of kids achieve remission after the first month of treatment (called the Induction Phase), and 85% are cured.

After the diagnosis, Abby was admitted to Children's. She had a "port" put in under the skin in her chest (kind of a permanent IV catheter), and also had a lumbar puncture during the same surgery on the 20th. This LP showed that she had no leukemic cells in her spinal fluid, thank God.
That evening of the 20th, she also received her first IV chemo treatment through her new port. We were allowed to come home on the 24th, one day before her 2nd birthday.

You can read an update on Abby's Story here: http://www.mistweavers.org/

Memphis Teal - Wilms tumor stage IV

2008-11-07T12:02:00.006-05:00

Todays second story is about Memphis Teal, who was diagnosed with Wilms tumor stage 4 at a very early age.

Memphis is a stage IV wilms tumor patient, with a 2nd reoccurence to his lung.

When Memphis was a little over a year old he started having some constipation problems, that laxitives, stool softners,prune juice and a no diary diet could help. He was in pain all of the time and vomiting. He was always at the doctors. Memphis had stomach distetion and still we were told he had a lazy bowel even by a peds GI.

So on his 2 year physical they found a mass in his stomach an scheduled us for an ultrasound. in august of 2006 memphis was diagnosed with wilms tumor. he was only 2, He had the right kidney and adrenal gland removed and underwent 4 months of chemo. eleven months after discovering the first tumor, he went in for a routine check and had an x-ray in which they found two tumors on his lungs.

He underwent radiation and had another check and it appeared as if the tumors had shrunk.
He is still facing more chemo, more scans blood transfusions and stays in the hospital until about the end of january.

Hopefully with the help of god and all of your prayers this will be the end and Memphis will get on with his life, like a normal 3 yr old. I will not let my guard down this time, I will also leave the port in as well. He will be in surgery to have his hernia repaired soon.
He will be seeing an ENT to find out if he did not develop a right sinus or if there is a cyst in there. He will also be starting his occupational therapy to try and lesson some of his tremors, which make some tasks very difficult to do with his hands.

After a short 3 days in the hospital we have solved some mysteries for Memphis, he has been diagnosed with reactive airway disease and is now on a nebulizer for daily breathing treatments also he is getting tested for some allergies causing his breathing problems and upper resp problems.

In three weeks he will be getting an MRI and an EEG to find out about his tremors and seizure like body shakes so cross your fingers and pray that the doctors find nothing.

Dr.Kotlow on Fuller rd fixed Memphs mouth on the 17th. He had one tooth pulled 3 crowns 4 fillings his tounge was snipped (class 3 tounge tied) and the gum in between the 2 front teeth was removed with a laser. He has no tooth pain anymore and is much happier, also the tooth fairy came and brought him a thomas train. He was very excited.

Thank you to Dr. Kotlow and his staff for waiving the fee for us.

Child Cancer Nutritional Needs

2008-11-02T11:36:00.004-05:00

Nutrition is important for everyone. However, it becomes a matter of special concern when it comes to children who suffer from cancer. It is necessary that children undergoing treatment, or who have just finished treatment, must have a balanced and nutritional diet. Additionally, it is important to consider what foods they are able to ingest and how the preparation of these foods affect the chid's health.

St. Jude Children's Hospital has started a program that teaches children how to prepare their meals. Moreover, in this program children who have undergone treatment teach children who are new to this situation how prepare food that fits their current needs.

"Proper nutrition is important for all children, but especially for those undergoing treatment at St. Jude. During treatment, children’s immune systems may be compromised. When their white blood counts are low, they are especially vulnerable to infection. During that time, the bacteria in many foods can be hazardous." (St. Jude Hospital)

“When their counts are low, we have to make sure they stay away from rice, tea, strawberries, soft-serve ice cream from bulk machines, and other foods that do not harm you and me, but that could be very serious for the patients,” says Registered Dietitian Kathryn Alexander.

This program helps children feel helpful, happy, and supported. The children who have undergone treatment and are better, provide comfort to those who are facing this tough reality. They inspire each other, learn and create lasting friendships through the process.

The following story is about how St. Jude's program helped Alaina Coleman, an 11-year old Leukemia patient who has undergone her second bone marrow transplant, find joy and recovery in learning how to prepare meals with St. Jude.

Please click here to learn more on this story, which is certain to touch your heart.

Jackson Memorial Hospital

2008-10-26T21:12:00.021-04:00

Jackson Memorial is a Level One care facility which provides health services for adults and children. The pediatric division of this hospital is focused on providing the best care for its patioents. This division is considered a separate hospital and it is denominated Holtz Children Hospital.

Holtz Children Hospital is part of Jackson Memorial and it helps provide the care needed for all of its child patients. Click here to find out more about the pediatrics at Jackson Memorial.

There are many childrena at this hospital waiting for someone like you to help bring them a little ray of light. You don't need to make a donation if you don't have the possibilities, you can offer your time as well. Jackson Memorial is in a constant search for volunteers. If you would like to offer your time, energy and joy click volunteering and learn about other ways to give!

Today we are going to talk about Carson Higgings, he is a brave young lad that has been suffering from neuroblastoma for over a year, this is his story:

Carson Higgins
4 years old

Diagnosis:

Carson was found to suffer from neuroblastoma, a common solid tumor of childhood.

Carson's Story:

When 3-year-old Carson was diagnosed with neuroblastoma, the news came as a shock to his parents. “I was devastated,” said his mother, Debbie. “I just started praying and praying.” For several weeks, Carson, who was usually a healthy child, ran high fevers and developed a limp when he walked. One day, Carson asked his mother to kiss his legs because they hurt. Over the next week, Carson was seen by several doctors, including a bone specialist, an oncologist and a rheumatologist. When a bone scan showed spots, the oncologist ordered an MRI. The diagnosis of neuroblastoma was made soon after. “During that whole week, we kept getting sent to more doctors,” Debbie said. “I kept getting the feeling it was something more. I was prepared for something, but not cancer.” While Carson’s family struggled with his diagnosis, his scans were sent to St. Jude Children’s Research Hospital, where a new protocol was about to begin for children with neuroblastoma. “I’d heard of St. Jude. We had donated in the past,” Debbie said, “but I never thought we’d be there.” By the time the family arrived at St. Jude, Carson was no longer able to walk.

At St. Jude:

At St. Jude, Carson received chemotherapy and radiation, surgery to remove the tumor and a stem cell transplant. Carson also received physical, occupational and speech therapies. His physical therapy sessions helped him regain strength and, to his family’s delight, Carson soon started walking again. Debbie is thankful for the donors who help support St. Jude. “The people who donate to St. Jude are just amazing,” she said, noting that their family appreciated the housing, transportation and grocery cards that are provided to patients and families. While being separated from his brothers, who range in age from 3-years-old to 16-years-old, was difficult, Carson is home now and thriving. He’s now in preschool, and loves to play with his brothers. “Carson has always been a special child,” Debbie said. “It was amazing to watch the peace he had while going through this.” Carson continues his chemotherapy at home and returns to St. Jude for regular checkups.

On a different note, we would like to thank those who attended Friday's Cancer Walk! We appreciate your efforts, thanks to your support nearly $200,000.00 were collected to help cancer sufferers.

Juan and Lucia attended the cancer walk and were excited to learn that their efforts helps families in need.

Lucia and Juan at last Friday's cancer walk:

This walk was done in honor of Sebastian Sarmiento. Again we request of you not money, but any form of help you can provide for the cancer afflicted and their families.

Thank you!!!

Sebastian Sarmiento

2008-10-20T17:38:00.010-04:00

Dear Family and Friends,

I would like to take a moment to introduce you to Sebastian Sarmiento. Sebastian is your typical 9-year-old boy that loves going to school, playing video games and soccer with his 13-year-old brother. Until September 2007 his life was as normal child but it changed with his Leukemia diagnosis. He had normal flu symptoms that took him to the doctor leading to the leukemia diagnosis.

Since then his family and him have been battling his disease. Earlier this year the family received news that Sebastian’s leukemia was in remission, and they began to make plans to return to school for the 2008-2009 year, but Sebastian’s plans were cut short when the leukemia relapse and his families’ life were turned upside down again.

Sebastian has been hospitalized, receiving several chemotherapy and radiation treatments. Since June 2008 he has been at Jackson Memorial Hospital in Miami with a couple relapses and going under more treatments to put him in a safe stage and proceed to a Bone Marrow Transplant. His mom is with him every day and night and has cut back her working hours to the bare minimum. Dad continues to work full time and take care of Sebastian’s brother. Once the transplant takes place Sebastian has to be in the hospital for a few more months.

At this point it is hard to say when he will return home and resume a normal life. Even though the family has insurance the medical and other bills are mounting. Over the next few months, family and friends will be hosting some events to help raise money for this family. If you would like to make a contribution a Benevolent Account has been opened at:

Washington Mutual Bank
1480 Greenview Shore Blvd.
Wellington, FL 33414
(561) 753-0189

Please make checks to Sebastian Sarmiento fund. Donations may be made at any Washington Mutual Bank or mailed to the location above. Donation amounts are kept anonymous. Please visit http://caringbridge.org/ and type "sebastiansarmiento" and look for details on his journey. The family will appreciate anything that you can do to help them.

Sincerely,

Libby and Mario Diaz

There are also other ways you can help. Cancer walks and bake sales are just some of the ways we can contribute our time to make a difference in a child's life. Last Friday Diana and Karol attended the cancer walk in West Palm Beach in honor of Sebastian. If you would like to participate in these cancer walks or bake sales please contact us for more information or keep visiting our blog as we will post information on coming events.

Join us this Friday, October 24 in the Boca Mizner Park at 7:30pm for the walk for cancer in Boca Raton! Your support makes a difference!

We are also currently searching for volunteers for our coming bake sales. We will be holding 2 bake sales, one in Boca Raton's St. Jude Church and the other in Wellington's St. Rita Church. If you would like to help, please e-mail karolu03@gmail.com. All contributions welcome.

Help us help Sebastian. He is a child who needs you

Hodgkin Lymphoma

2008-10-08T14:24:00.010-04:00

Cancer of the immune system that is marked by the presence of a cell called the Reed-Sternberg cell is known as Hodgkin lymphoma. This type of cancer is classified into two categories: Classical Hodgkin lymphoma and Nodular lymphocyte-predominant Hodgkin lymphoma.

Hodgkin lymphoma is the third most common type of childhood cancer. Research shows that in 2008 the estimated number of new cases of Hodgkin lymphoma in the United states is 8,220 and 1,350 deaths.

Risk Factors:

Being between the ages of 5 and 14.

In children younger than 14 years, it is more common in boys than in girls.

Being infected with the Epstein-Barr Virus.

Having a brother or sister with Hodgkin lymphoma

Symptoms

Painless enlargement of lymph nodes, spleen, or other immune tissue.

Fever

Weight loss

Fatigue

Night sweats

Itchy skin

Amanda's Hodgkin's Story

Amanda is an honor-roll student whose favorite subject is math, but she's facing another kind of problem: Hodgkin's disease. Hodgkin's disease is a form of lymphoma (say: lim-foh-mah) - a cancer that starts in the lymph nodes. Lymph nodes are masses of tissue that control the flow of lymph, a fluid containing white blood cells that is responsible for fighting infections in the body.

She was diagnosed when she was 11. It all started when Amanda's parents noticed that her neck was swollen. She didn't feel any pain. Her family doctor first thought an infection could have caused her swollen lymph nodes and sent her to a children's hospital for further investigation. There, Amanda had an X-ray and a CT scan of her neck, which showed a lump next to her windpipe that was in danger of blocking her airway. That lump was a tumor, so things started to move fast.

Amanda was immediately scheduled for a biopsy (say: bye-ap-see), a surgical procedure to remove and examine tissue from her tumor. The next thing she knew, she and her parents were meeting with an oncologist (say: ahn-cah-luh-jist), a doctor who works with cancer patients. The oncologist explained that Amanda had cancer. Amanda was brave when she heard the news. "The doctor was great about telling me what the disease was and what to expect," she says. "The only thing that really got to me was when she said I'd lose my hair."

Chemotherapy and Hair Loss

Sure enough, after the second round of chemotherapy (treatment to kill the cancer cells), Amanda's shoulder-length, honey-blonde hair began to fall out a bit at a time. When she finally gave in and had it shaved off, she saved it in a bag. Amanda still misses her hair, but has begun collecting hats to coordinate with her colorful wardrobe. Her favorite one is navy blue.
Because she has very little hair, Amanda notices that strangers often stare at her. But her friends are used to her new look. They have been loyal, she says, and have learned to find ways to still hang out together despite her cancer.
"I still play with my friends," she says, "but we have to be more careful now because of the risk of infection. And we mostly play at my house."

Stuff Amanda Can't Do

While she's being treated, Amanda can't go to some of her favorite places or do some of her favorite things. She can't go the mall or go to her tap and jazz dancing lessons. She can't swim because she has a central chemotherapy line, which was placed surgically in her chest to help with treatments. She's also not allowed to lie in the sun.
For Amanda, the hardest part about having Hodgkin's disease is not being able to be as social as she would like to be. Because she might get sick from the other kids, Amanda can't attend school. Instead, she's tutored privately at home. But after her treatment, she's hoping to return to her busy schedule of cheerleading, jazz, and tap, as well as student council and drama club at her middle school - as long as her recovery continues to progress.

Looking Ahead

Right now, she's making the most of her time at home, where she lives with her parents; older brother, Brian; older sister, Sammie; 12-year-old German shepherd, Poochie; and her puppy, Chemo. Her dream is to travel to Africa someday, where she wants to photograph wild animals. She's optimistic about the future and looks forward to feeling better.
Meanwhile,Amanda says it's important to let others know that she's the same person she's always been. "After all," she says, "just because you lose something doesn't mean you lose everything."

Brain Tumor

2008-10-06T14:12:00.013-04:00

A mass of abnormal cells that start in the brain is known as a brain tumor. Brain tumors can be malignant or brain cancer (invade and distroy parts of the brain) or benign (stay in one area and don't cause damage). Brain cancer is the second most common type of cancer in children. Approximately 1,500 children in the United States are diagnosed with a brain tumor each year.

According to the Children's Hospital of Winsconsin, the majority of brain tumors are due to abnormalities of genes involved in cell cycle control, which cause uncontrolled cell growth. These abnormalities are caused by alterations directly in the genes, or by chromosome rearrangements which change the function of a gene.

Some chemicals may change the structure of genes that protect the body from certain cancers. Research has been investigating parents of children with brain tumors and their past exposure to these chemicals.

Most common types of brain tumors in children:

Astrocytomas

Usually non-cancerous

Slow growing cysts

Most common in children 5-8

Main treatment surgery to remove tumor

Brain Stem Gliomas

Average age of development is 6

Tumor may grow very large before triggering symptoms

Surgery is not possible due to brain location

Radiation and Chemotherapy are used to shrink tumor and prolong life

Five year survival rate is low

Ependymomas

About 8-10% of pediatric brain tumors

The tumors are located in tiny passageways in the brain (ventricles)

They block the flow of cerebrospinal fluid CSF

Treatment may include surgery, radiation, therapy and chemotherapy

Meduloblastomas

Most common type of children brain cancer

They occur more often in boys than girls

Develop around 5 years of age

Surgery alone does not cure this type of cancer

Chemotherapy and radiation are often used in combination with surgery

Signs of Brain Tumor in Infants

Increased head circumference

No red reflex in the eye

Opisthotonos

Separated Sutures

General Symtoms

Decerebrate posture

Headache

Loss of memory

Nausea

Ceizures

Speech difficulties

Vision problems including double and decreased vision

Vomiting

Weakness of body area

Brain Tumor– Josh’s Story

Lisa and Jim of Ham Lake, Minn., were devastated when they learned their son Joshua had just a 30 percent chance of being cured of the tumor doctors found in his brain. However, with the help of a cutting-edge treatment at the University of Minnesota Children’s Hospital, Fairview and the ongoing research supported by Children’s Cancer Research Fund, the family was ready to defy the odds.

Discovering the Disease

Before he was old enough to talk in complete sentences, little Josh would wake up in the morning and say to his mom, “Head hurt.” Then, he would fall on the couch in misery. Vomiting seemed to make him feel better but every few days he would wake up in pain again — even after being treated for sinus trouble by the family doctor. On Christmas Eve morning 2002, Josh was so sick that his parents took him to the emergency room at Children’s Hospital in St. Paul. A CAT scan revealed the tumor growing in the left frontal lobe of Josh’s brain.

Desperate for Treatment Options

Doctors at Children’s successfully removed Josh’s tumor but it was “high grade,” which meant that the surgery alone would not be sufficient to cure him. Without further treatment the cancer was certain to come back.

“It was overwhelming to learn that our son had a brain tumor, and worse, that it was cancerous,” recalls Lisa. “ He was only 2½ years old – how could this happen? We were desperate to do something but we didn’t know what to do.”

Josh’s best hope would be to enroll in a clinical trial and his oncologists referred the family to Dr. Joe Neglia, chief of the Pediatric Hematology-Oncology program at the University of Minnesota. Dr. Neglia was testing an experimental treatment for very young children like Josh with high-grade brain tumors.

Clinical Trial Offers Hope

The treatment involved a combination of powerful chemotherapy drugs. One of the drugs was very effective in killing tumor cells but also extremely toxic to the bone marrow and immune system. Josh needed three cycles of this drug to be sure he got an effective dose. To counteract the drug’s toxic effects, the treatment also included a process called stem cell rescue: Dr. Neglia would extract stem cells from Josh’s blood, freeze them, and then infuse them back into Josh’s blood stream after each cycle of the marrow-killing drug. In this way, Josh’s own stem cells would be used to restore his immune system.

The treatment was harsh but it increased Josh’s chance of surviving. “This was our ray of hope,” says Lisa. “It was hard to allow Josh to go through the chemo but the stem cell treatments helped him recover. We felt it was the best treatment possible, given his situation.”

By supporting the University of Minnesota Cancer Center’s Stem Cell Biology and Phase I Therapeutics Programs, Children’s Cancer Research Fund is enabling the University to continue its pioneering efforts in stem cell transplantation as well as in d eveloping and testing new treatment strategies for children with cancer refractory to conventional therapy, or who are at high risk for treatment failure. This support allows researchers to expend their studies to further develop novel approaches for treating pediatric cancer patients like Josh.

Josh’s treatment lasted for six months. He lost his hair and eyebrows. He also lost a lot of weight, especially during the first round of chemotherapy, when anti-nausea drugs were ineffective. In deciding to allow Josh to receive experimental treatment, the family took a big chance, and it was hard to see their son suffer painful treatment side effects. They prayed they had made the right decision.

Enjoying the Present and Optimistic for the Future

Four years later, they’re thrilled that their son is free of cancer, and they are especially glad he was treated at the University of Minnesota. “Every single nurse on 5B [the children’s oncology unit] was an angel,” Lisa says. “And Dr. Neglia and Jane Torkelson [Coordinator of the University’s Brain Tumor Program] were just so awesome.”

“Dr. Neglia cares about your child so much,” she continues. “He has a really hard job but you feel confident because you can see how much he cares.”

Josh finished his treatment in June of 2003. His parents take him to the University’s Oncology Clinic annually for a check-up and will continue to do so for several years. So far, there is no sign of any cancer returning. Research, like that conducted by Dr. Neglia and supported by Children’s Cancer Research Fund, is the best chance of a cure for children with brain tumors. Thanks to research and the dedication of the University of Minnesota’s health care team, Josh is in good health — an outgoing second-grader who “makes friends like crazy,” loves baseball and computers, and is the apple of his mom’s eye.

What is Leukemia?

2008-09-23T20:26:00.010-04:00

Leukemia is a type of cancer that affects white blood cells, which are also known as leukocytes.
When a child has leukemia, large numbers of abnormal white blood cells are produced in the bone marrow. These abnormal white cells crowd the bone marrow, flood the bloodstream, but since they are defective, they cannot protect the body against disease.

As leukemia progresses, the body stops producing other types of blood cells. This results in anemia and bleeding problems, in addition to the increased risk of infection caused by white cell abnormalities.

Acute leukemia is a type of leukemia which develops rapidly and represents about 98% of leukemia cases in children. Only two percent of leukemia cases are chronic, in which the development is slow.

Of the cancer cases in children younger than 15 years of age, leukemia represented about 31% in the years 1990-95 and 25% among those younger than 20 years of age. In the US there are approximately 3,250 children diagnosed each year with leukemia and 2,400 with acute lymphoblastic leukemia (ALL).

Acute Myelogenous Leukemia - Ryan’s Story

For Ryan, it started when a cold passed through his family. As the youngest, six-month-old Ryan was the last to come down with it...but after the sniffles turned into a raging fever, his pediatrician decided to test a blood sample.
The results were absolutely devastating – Ryan had leukemia.

A Ray of Hope

Ryan’s diagnosis was acute myelogenous leukemia (AML), an aggressive and fast-growing cancer of the blood and bone marrow. In healthy children, the bone marrow makes many unformed cells called blasts that normally develop into white blood cells to fight infection. But in AML, the blasts are abnormal, and quickly overcome the production of normal red blood cells, white blood cells and platelets the body needs.
There was a ray of hope: because Ryan was so young, the leukemia cells had not had time to spread throughout his tiny body.
Ryan’s doctors immediately began aggressive treatment with three rounds of chemotherapy over a four-month period. The little boy appeared to go into remission.
Not long after, a check-up confirmed what no one wanted to hear: the leukemia cells had not been completely destroyed.
“Hearing that was worse than the initial diagnosis of his leukemia,” his mother remembers. “This time around, we knew just way too much.”

Round 2 – An Umbilical Cord Blood Transplant

Ryan once again began battling for his life. Another round of chemotherapy proved to be effective, but Ryan needed a stem cell transplant to help his bone marrow recover. Stem cells need to be matched between the donor and recipient to ensure they will not be rejected by the body. Unfortunately, no one in Ryan’s family had a close enough match.
Over the last few years, Children’s Cancer Research Fund has provided critical funding for the Umbilical Cord Blood Stem Cell Biology Program at the University of Minnesota Cancer Center, where the transplantation of umbilical cord blood from unrelated donors has been pioneered and perfected. Without the development of that expertise, Ryan’s story might have ended.
One week before his first birthday – Ryan received a stem cell transplant from umbilical cord blood that allowed for his recovery and eventual discharge from the hospital.

Becoming a Survivor

Today, Ryan is a healthy childhood cancer survivor!
Although Ryan’s battle was always touch-and-go, one thing was never in doubt – innovative treatments helped give this child a new chance at life!
Children’s Cancer Research Fund researchers have become world-renowned pioneers in umbilical cord transplantation. In fact, they perform more cord blood transplants than any other facility in the world. Their expertise has led to lifesaving breakthroughs in treatment that have helped save thousands of children’s lives.

Cancer General Information

2008-09-20T15:23:00.000-04:00

What is Cancer?

According to the charity organization Cancerbackup, cancer is a disease of the cells. Normally, cells divide in an orderly and controlled manner. If for some reason the process gets out of control, the cells carry on dividing, developing into a lump which is called a tumour. Tumours can be either benign or malignant. Cancer is the name given to a malignant tumour.

Cancer is a major public health problem in the United States as well as many other parts of the world. Today, one in four deaths in the U.S. is due to cancer and it is the second most common killer in children, exceeded only by accidents.

Cancers that affect children are quite different from adult cancers in that they tend to occur in different parts of the body. They also look different under the microscope and respond differently to treatment. Cure rates for children are much higher than for most adult cancers. The 5-year relative survival rate among children has improved from 58% for patients diagnosed in 1975 to 1977 to 80% for those diagnosed in 1996 to 2003.

Some of the most common types of child cancers are:

Leukemia - 33%

Brain and Nervous System - 21%

Hodgkin Lymphoma - 10%-15%

Neuroblastoma - 7%

Wilms Tumor - 5%

A Child Needs You

2008-09-16T20:07:00.000-04:00

This blog has been created with the purpose of raising conscience regarding children with cancer in our community. We would like to share experiences, facts, and lessons regarding this difficult disease that children and families battle with every day. We want to teach ways you can help these people with their needs not just with monetary contributions but with time, support, and other non-conventional forms of charity. We will share facts, stories, and suggest solutions with the hope that they will help at least a small difference in a child's life. We want to bring a much needed smile to every child's face.