Category

Children

Timothy’s Road to Health

Timothy is the kind of boy who would never let a little stomachache slow him down. A sports enthusiast, you could often find him with a ball in his hand – usually a baseball or football. But toward the end of 2017, a persistent stomach pain started to take its toll. As the pain’s severity increased, his mother, Sloan, began looking for answers.

“We began at our pediatrician and then progressed to a pediatric gastroenterologist,” Sloan recalled. “After about three months of trying things that didn’t help, the doctor ordered a sonogram.”

The sonogram revealed a tumor near his stomach and liver. Timothy was immediately prepped for a biopsy where the tumor was identified as neuroblastoma – a childhood cancer that develops from immature nerve cells found in several areas of the body. The diagnosis was a surprise because Timothy was eleven years old, and neuroblastoma most commonly affects children five or younger.

After the biopsy confirmed the results, Timothy had another surgery to add his port and started his first round of rigorous chemotherapy that was to last five months. While the treatment did wonders to shrink the tumor, it also ravaged his body at the same time.

“Timothy went from a healthy boy to a state of malnourishment,” Sloan said. “He was so sick that he got down to 48 pounds, and we had to have a g-tube placed to give him nutrition.”

The next phase of treatment was removal surgery. The chemo had worked to shrink the tumor, and during a seven-hour operation, doctors took out all they could. Because the tumor was wrapped around two major arteries, the surgeon was unable to remove it completely. Once he recovered, Timothy had a stem cell transplant followed by radiation, and then immunotherapy, which is a type of cancer treatment that boosts the body’s natural defenses to fight cancer.

The immunotherapy was particularly harsh on Timothy, and he spent weeks at a time in the pediatric intensive care unit. Through all of the difficult treatments, separation from friends and family, and time away from home, he never complained. Despite missing many days of school, he worked hard and was able to finish the sixth grade with all A’s!

Timothy has been declared No Evidence of Disease (or NED) for ten months. He isn’t quite finished with his treatment. In order to prevent a relapse, he is enrolled in a clinical trial and takes three pills twice daily. He will continue that regimen for another year and a half.

“All-in-all, Timothy is doing great,” said Sloan. “His weight is up to 80 pounds, and he’s looking forward to playing baseball again in the spring. We aren’t sure about football, but we’ll decide on that later. For now, we are just thrilled that he’s healthy again.”

Timothy’s family has expressed gratitude to CURE for helping them deal with the challenges of treatment. The hospital where he received the majority of his treatment was 80 miles from his home, and his stem cell transplant was 300 miles away. CURE was able to help ease the financial burdens of the travel through our family emergency fund – part of which helps with gas and other travel-related expenses.

“We want to make sure the high cost of transporting a child to treatment doesn’t take a toll on a family’s finances,” said Lisa Branch, CURE’s Director of Patient and Family Services.  “CURE is happy to be able to help families like Timothy’s in this way, because a long stretch of highway should never be a barrier to a child’s health.”

Blessings in the Middle of the Storm

When Jessica Brandon received the call that her six-year-old son, Drew, had collapsed in the school cafeteria, she didn’t know what to expect. Fortunately, she was a teacher at the same school, so she was able to be at his side in minutes. She arrived to find him bluish and struggling to breathe. After scooping him up and racing to the nurse’s office, she called 911. Soon they were both on their way to the emergency room. With oxygen, Drew was starting to look better.

“He had been just fine the night before,” Jessica remembered. “He struggles with asthma and had a couple of viral infections in recent months. But nothing like this.”

Doctors in the ER assumed Drew was suffering from another virus and ordered a chest X-ray of his lung. The next person to enter his room was an oncologist, and Jessica’s world changed forever. The X-ray showed a tumor the size of an adult’s fist on Drew’s chest wall between his lung and heart. His collapse was a result of the pressure exerted by the growing tumor pushing against his left lung. The same hospital had recently done an X-ray of his chest that showed nothing. Amazingly, the tumor had grown that large in just five weeks.

“When we learned about the tumor and put it all together, we realized just how lucky and blessed we were that he collapsed at school,” Jessica shared. “The doctor said he could have just as easily gone to sleep one night and never woken up.”

Drew was diagnosed with stage 4 t-cell lymphoblastic lymphoma. While the advanced stage of the disease was cause for concern, the prognosis was actually good because this type of childhood cancer carries an 85% survival rate. The treatment plan called for a strong regimen of chemotherapy that would last for three years and regular lumbar punctures to monitor Drew’s bone marrow. He started chemo within 24 hours of his collapse, and within a month it had melted the large tumor in his chest. Additionally, the cancer in his bone marrow was almost nil.

But he wasn’t done fighting. Drew seemed to suffer from every complication possible during his treatment. He got a blood clot in his shoulder that required blood thinners for several years, and that wasn’t the worst of it.

Five months into treatment, Drew became very sick and was taken to the hospital. While the chemo was destroying the cancer, it was also depleting Drew’s natural immune system. After a battery of tests, doctors discovered that five viruses had invaded his weakened body. They also learned that his heart was functioning at less than 30% of normal.

“They had no choice but to put him in an induced coma to let his body heal,” Jessica explained. “He was in a coma for four weeks, and during that time, he coded twice. Both times they ushered us into the hall while they performed CPR on the other side of the door. We thought we had lost him.”

But Drew is a tough one. In fact, Jessica calls him her fire-breathing dragon and says he is all-boy. Drew pulled through that difficult episode and took a little break from his cancer treatment to gain strength. Soon he was back to full chemo and his body seemed to tolerate it better this time. He finished treatment in August 2018 and turned ten in February. He loves soccer, building with Legos, and playing Fortnite and started the fifth grade in the fall.

“Drew was old enough that he remembers his treatment – both the good and the bad,” Jessica said. “He still hates having blood drawn. But the incredible doctors, nurses, and families we’ve met will always be a part of his life, and the blessings we received in the middle of the storm have made him stronger.”

Take the next step to support research that will help save kids with cancer... kids like Drew.

Lights for Ellie

For most, it is unimaginable that a child can be diagnosed with cancer. When it happens, everyone in the community wants to pitch in and help. Obviously, the patient’s parents are immediately overwhelmed with the treatment itself, and so many well-meaning offers of help can add stress to an already stressful time.

Brynn Draughon found herself in this situation in June after her daughter, Ellie, was diagnosed with cancer. Faced with a treatment that would force long hospital stays, she didn’t know how to channel the outpouring of love from her community. But then she and a friend came up with a brilliant plan.

Ellie has always loved Christmas. Since she was little, she has wanted her house to be awash in Christmas lights. Her dream has been to be in the family car, see lights from a distance, and feel the contented glow from her beautifully lit home. Unfortunately, her house is surrounded by trees, and it would take far too many lights to be bright enough to be seen from the street.

Earlier this year, Ellie’s leg started hurting. After visits to different doctors to identify the cause of her pain, a biopsy indicated that Ellie had osteosarcoma, a childhood bone cancer usually found around the knee. She started chemo right away, followed by surgery in September. The surgery took a good portion of her femur, most of her knee, and part of her tibia. The remaining bones were reinforced with rods to strengthen the new joint.

“She is recovering well,” said Brynn. “She still has pain and walks with a walker, but she has handled treatment better than I expected. Ellie has had a very positive attitude through the whole thing.”

Ellie is the youngest of four children and a senior at Woodstock High School. When her school and community learned of her diagnosis, offers of help poured out.

“We had so many friends, family members, neighbors, and strangers who wanted to help,” recalled Brynn. “While having a child diagnosed with cancer is the worst thing that can happen to a parent, the flip side is that you get to see a beautiful side of this world as people rush in to help.”

Brynn struggled with suggestions of how people could help until she remembered Ellie’s Christmas light dream. She decided that making that happen might be a way to keep Ellie’s spirits high during her long treatment. With the help of friend and fellow cancer mom, Anita Corsini, Brynn began the process of making Ellie’s dream a reality. Neighbors, classmates, and complete strangers donated toward Lights for Ellie, and it didn’t take long for the fund to grow well beyond what was needed. Together they found a lighting company to set up 15,000 lights in Ellie’s yard.

“We tried to keep it a secret from her, but there was no way we could,” laughed Brynn. “Ellie watched them set up the lights up one Saturday. When it got dark, we got in the car and drove around the block so she could see them as we approached. It was the first night she had felt true joy since she was diagnosed. We know it’s early for lights, but it really isn’t about Christmas. It’s about making Ellie smile – and hopefully bringing joy to others.”

Since their fund went way over the amount needed to set up the lights, the family has decided to donate what is left to CURE as a way to pay-it-forward. They’ve even put a sign in their yard thanking the community and pointing people to CURE as a way to raise awareness for childhood cancer.

And what does Ellie think about all of this?

“It’s really special to me that everyone in my community came together to make one of my childhood dreams come true,” Ellie said.

When she is home from treatment, she loves to sit by the window and look at the lights. It also makes her happy when people slow down to look at them.

Well done, Woodstock. You brought a young lady incredible joy during the hardest of circumstances.

Take the next step to support research that will help save kids with cancer... kids like Ellie.

Doing Life on Eliza’s Time

Eliza is a happy, energetic 3-year-old who does things on her own schedule. She also happens to possess an extra chromosome. Being born with Down syndrome brings a unique set of challenges, including an increased risk for a variety of health problems such as heart defects, respiratory and hearing difficulties, and thyroid conditions.

At her tender age, Eliza has already had two open-heart surgeries – one when she was just four months old – and she has also faced another battle: cancer. Due to a combination of genetic factors, children with Down syndrome face a high risk for childhood leukemia. Their chance of getting leukemia is roughly 20 times that of the general population.

While recovering from her heart surgery, Eliza became sick. Her family took her to the hospital and what started as pneumonia ended up being much more. A blood test indicated leukemia blasts.

“The pneumonia was actually a blessing in disguise,” Eliza’s mother, Katie, said. “She was only seven months old and had been sick on and off since her heart surgery. If we hadn’t taken her to the hospital for the pneumonia, the cancer might have gotten worse.”

Eliza’s parents soon learned that she had acute myeloid leukemia (AML). This is where her genetic disposition helped her. The success rate for children with Down syndrome is actually higher with AML than the more common acute lymphoblastic leukemia (ALL). This is the opposite of the general population.

“We were told that their bodies just handle the disease better than the average patient,” Katie recalled. “So that was the first bit of positive news we received.”

For the next few weeks Eliza was a very sick little girl. Besides battling cancer, she had to fight off two viruses and start chemotherapy. But through it all, Eliza smiled even when she didn’t feel like it. Her strength shined through with every poke, stick, and bad-tasting medicine she did not want to take.

The hardest part for Eliza was being in isolation for a month. She couldn’t see her brother or sister at all and only had limited other visitors. She enjoyed connecting with her siblings through FaceTime, and they drew pictures to hang around the room to make it a happier place. Even though the nurses administered the pokes and sticks that caused her pain, she became fast friends with them and the other hospital staff.

Eliza has now been in remission for two years! She breezed through her treatment with an amazingly cheerful attitude. Likewise, her heart sounds perfectly healthy now – gone is the murmur that caused her early problems. She is healthy and growing strong.

“Eliza’s full name is Elizabeth Aveline – which means ‘strong little bird’,” Katie explained. “When we named her, we never dreamed that in just a couple of years we would learn how strong she is.”

Now that she is home fulltime, Eliza enjoys playing with her brother and sister, having random dance parties in the kitchen, listening to The Wiggles, playing dress up, and loving on her baby dolls. Like everything else, Eliza learns things when she decides it is time. She is starting to speak but prefers to use sign language at this point. But her mother is certain she’ll start talking when she is ready. After all, she’s doing life on Eliza’s Time.

X