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Tag Archives: Brain Tumor

Introducing Super Logan, a Childhood Cancer Superhero!

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“Super Logan” in the Batman costume in the middle.

Today, we’d like to introduce you to Logan, affectionately called “Super Logan” by his friends and family for his amazing, courageous fight against tremendous odds. On December 7, Logan and his family joined Hope 4 Heroes (ACCO’s Colorado-based Founding Hope Fund) and Rock Bottom Downtown Denver to participate in a public PJammin’ event organized by Colorado Rock Bottom Restaurants to raise awareness about childhood cancer. We would like to thank Logan and his family for taking the time to participate in this important event and for sharing their childhood cancer story with us.

Logan’s Story: Aggressive Stage Three Ependemoma (Brain Tumor)

Logan’s childhood cancer story began one evening in June, 2014 when he collapsed unconscious while walking to his parents’ bedroom. The five-year-old was rushed immediately to the local ER, where a CT scan showed that a large mass in his brain had hemorrhaged, causing paralysis on his left side. Logan was airlifted to a larger hospital, where his parents received the worst possible news: Logan had an inoperable brain tumor located inside his brainstem and he was unlikely to survive more than three days.

Logan’s parents, however, refused to accept this devastating diagnosis. They immediately sought a second opinion from surgeons at the Barrow Institute, part of the Phoenix Children’s Hospital, who believed that at least part of the tumor could be removed. Although the outcome was by no means guaranteed, surgeons felt that surgery could at least extend Logan’s life and give him a fighting chance. With nothing to lose, Logan was transferred to Phoenix Children’s Hospital for an eight-hour surgery.

In fact, the outcome was better than anyone could have imagined: Logan’s golf-ball-sized tumor was located entirely outside of the brainstem and the surgical team was able to remove it all, in its entirety. Logan’s family described the surgeon’s reaction when he told them the news as “giddy”, not a word one usually hears in these circumstances. Logan went into surgery hoping only that his life might be extended a little bit, but miraculously, came out cancer-free!

A Second Chance at Life, but A Very Long Road to Recovery

Yet despite this amazing outcome, Logan’s cancer journey was far from over. Although the tumor was gone, for now, Logan was unable to perform many basic functions that we take for granted every day, including talking, walking, and even swallowing. Moreover, he faced the very real possibility that the tumor, a fast-growing Ependemoma, would return without x-ray radiation therapy, a treatment as aggressive as the tumor and linked to significant long-term health risks and even secondary cancers.

Again, Logan’s family sought other options. So-called “traditional” X-ray radiation therapy is mostly commonly used as a post-surgical treatment for brain tumors like Logan’s, but is linked to severe side effects and even secondary cancers, especially in young children whose brains are still growing and developing. Instead, Logan’s parents took Logan to San Diego to undergo 6½ weeks of proton radiation therapy. The goal of proton radiation therapy is to more precisely target any remaining cancer cells, using pencil-beam scanning that carefully builds up the dose layer by layer exactly at the site of the tumor, hopefully limiting damage to surrounding healthy cells.

Thus far, Logan’s amazing “miracle” continues: his regular scans, although the source of extreme “scanxiety” so common for families fighting childhood cancer, have all come back clear, indicating that Logan is still cancer-free. But Logan still faces many, many challenges; “the past two years have been one trial after the next for our brave boy,” recounts Logan’s mother. Logan spent months in rehab after the surgery overcoming the paralysis caused by the tumor, re-learning to walk, talk, and even swallow. One therapist stated that Logan was one of the hardest swallowing cases she had ever seen and that her team honestly wasn’t sure if he would ever be able to swallow normally again.

The proton therapy has left its mark as well. He has been diagnosed with a vascular condition called Moyamoya and has suffered multiple strokes, including one that temporarily left him without sight. In March 2016, Logan underwent a second serious brain surgery. Most recently, abnormal weight gain has been linked to the development of central sleep apnea, a condition in which the brain no longer automatically commands breathing during sleep. Each day seems to bring new challenges to Logan and his family, but as his mother proudly notes, Logan never gives up: “Logan will always have battles to fight but we will be here and ready to stand strong next to him. He is an incredible boy and we are so proud to call him our son.

Thank you, Logan, for sharing your inspirational story with us and for showing us that it really is possible to fight, for showing us the true face of childhood cancer. You are a true Superhero!

About American Childhood Cancer Organization

American Childhood Cancer Organization (ACCO) is a non-profit charity dedicated to helping kids with cancer and their families navigate the difficult journey from cancer diagnosis through survivorship. Internationally, ACCO is the sole U.S. member of Childhood Cancer International (CCI), the largest patient-support organization for childhood cancer in the world. Here in the United States, ACCO promotes the critical importance of ensuring continued funding into new and better treatment protocols for childhood cancer.  And most importantly, ACCO is focused on the children: developing and providing educational tools for children fighting cancer and their families, empowering them in their understanding of childhood cancer and the medical decisions they must make during this difficult journey. All of ACCO’s resources are available free of charge for families coping with childhood cancer.

For additional information about childhood cancer or on the ACCO, or to order resources for you or your child, please visit our website at www.acco.org , call 855.858.2226 or visit:

Want To Read American Childhood Cancer Organization On Your Phone? Click the NoteStream logo: NoteStream

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Layla’s Story

Today, we would like to introduce you to Layla. Layla is a strong, courageous four-year-old who has been battling a rare, inoperable brain tumor for the past 15 months. Diagnosed at the age of two, Layla’s tumor has not responded to “traditional” chemotherapy-based treatments, and her family now faces the daunting prospect of attempting less well-known options, some well-researched and some still experimental, in the on-going search for an effective weapon against this devastating disease. In the meantime, they take every day as it comes, finding tools and resources to help Layla cope with the difficult days and sharing her smiles and giggles on the good ones. We hope you will join us in offering Layla and her family our support as they embark on this next stage of their cancer journey.

Juvenile Pilocytic Astrocytoma

20160908_132323Layla has Juvenile Pilocytic Astrocytoma, a rare brain tumor that grows in the supportive tissues of the brain known as astrocytes. In Layla’s case, the tumor is located on her brainstem, blocking the natural flow of cerebral spinal fluid. At the time of her initial MRI, the spinal fluid had begun to fill her brain causing headaches and mobility issues, and eventually leading to “life-threatening” pressure that required emergency surgery to drain the fluid and relieve the pressure.

Because of its location on the brain stem, oncologists could not surgically remove the tumor without risking Layla’s life. Another traditional tool in the fight against brain tumors—radiation—is not appropriate for children Layla’s age due to the extreme risk of severe brain damage. Still, the prognosis was hopeful: JPA is usually a benign, “low grade” tumor that Layla’s team felt would probably not grow. They placed a permanent shunt to enable the normal drainage of spinal fluid around the tumor, with the expectation that it would last for 10-15 years. Layla would receive an MRI every three months for the first year to monitor the tumor, with the frequency of MRIs decreasing over the years.

20161013_115549Unfortunately, the complications began almost immediately. First, Layla’s shunt over drained, causing massive bleeding. Two months later, the shunt failed to drain again, leading to more hydrocephalus. Another couple of months, another malfunction: Layla was back in the ICU for a failed shunt, hydrocephalus, and now bleeding as well. Each of these complications required emergency surgery to relieve the hydrocephalus, then additional surgeries to repair damaged tissue and replace the shunt.

20160908_134459Throughout this difficult period, routine scans of the tumor showed good news: as expected, the tumor was not growing. Yet once again, Layla’s family learned just how quickly bad news can follow good: just two weeks after a positive scan, another follow-up scan showed 25% growth in the size of the tumor. Layla immediately began chemotherapy through a clinical trial. Unfortunately, after three months of chemotherapy, it has now become clear that Layla’s tumor is not responding and she has been taken off the chemotherapy in order to avoid the potential for negative side effects.

Hero Beads and Port-a-Cat: “Life Changing” Resources for Layla and Her Family

img_9759As difficult and as devastating as this journey has been for Layla and her family, they have found much-needed help and support from friends and family, as well as tools and resources to help them cope. ACCO’s informational booklets have helped Layla’s parents navigate the incredibly difficult world of childhood cancer, while Layla loves Marvelous Marleigh, the only age-appropriate book Layla’s mother could find to help Layla understand what was happening to her. And perhaps most importantly, as her mother notes, “Cozy the Port-a-Cat was a life-changing therapy tool for her and her ACCO blanket is her most coveted comfort item.” Each time Layla visits the hospital, Cozy is treated like a patient, too, with his own regimen board just like Layla’s!

And Layla and her family have been able to document Layla’s journey with ACCO Hero Beads. Choosing a Hero Bead for every procedure gives Layla a sense of accomplishment and a feeling of ownership over her individual story; her Hero Beads provide a meaningful way to visually represent what she has gone through over the past 15 months. ACCO Hero Beads can be purchased individually or in bulk from our store; 100% of the proceeds continue to fund ACCO’s programs to help and support kids with cancer and their families! For more information about ACCO’s Hero Bead powerful program, we encourage you to visit our website at:  http://www.acco.org/hero-beads/.

About American Childhood Cancer Organization

American Childhood Cancer Organization (ACCO) is a non-profit charity dedicated to helping kids with cancer and their families navigate the difficult journey from cancer diagnosis through survivorship. Internationally, ACCO is the sole U.S. member of Childhood Cancer International (CCI), the largest patient-support organization for childhood cancer in the world. Here in the United States, ACCO promotes the critical importance of ensuring continued funding into new and better treatment protocols for childhood cancer.  And most importantly, ACCO is focused on the children: developing and providing educational tools for children fighting cancer and their families, empowering them in their understanding of childhood cancer and the medical decisions they must make during this difficult journey. All of ACCO’s resources are available free of charge for families coping with childhood cancer.

For additional information about childhood cancer or on ACCO, or to order resources for you or your child, please visit our website at www.acco.org.

 

To submit a Gold Ribbon Hero’s story, please Click Here

For additional information about childhood cancer or on the ACCO, or to order resources for you or your child, please visit our website at www.acco.org , call 855.858.2226 or visit:

Want To Read American Childhood Cancer Organization On Your Phone? Click the NoteStream logo: NoteStream

 

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