Team Phoenix-Izabella Voelker Fund
On May 24, 2016, Izabella Phoenix Voelker was diagnosed with a brain tumor following an appointment with her pediatrician, Dr. Leonard. Dr. Leonard sent Izabella to Mary Lanning in Hastings, NE, for a CAT scan and an MRI which led to the discovery.
On May 25, 2016, Izabella was admitted at Children’s Hospital in Omaha, NE, under the care of Dr. Puccioni, a pediatric neurosurgeon. After a further CAT scan and MRI, Dr. Puccioni scheduled Izabella for surgery on May 26, 2016, to perform a biopsy of the tumor and place an External Ventricular Drain (EVD) that allowed the spinal fluid that had built up in her brain causing hydrocephalus to be removed. The tumor had grown in the exact middle of Izabella’s brain, causing it to block the tube that allows the spinal fluid to drain into the rest of the brain and down into the spinal column. This was causing increased fluid and pressure in Izabella’s ventricles. This surgery left a half moon shape incision on her upper right forehead. Once the drain was removed on June 5, 2016, there was another stitch on the upper right side of Bella’s head.
On May 30, 2016, the biopsy results came back showing that the tumor was pineoblastoma. The pineal gland is a tiny organ located deep inside the brain that secretes (gives off) a hormone called melatonin, which controls sleep. One type of tumor that starts in this gland is called a pineoblastoma. Pineoblastoma is more aggressive than other types of pineal gland tumors. Pineal gland tumors as a group are rare, accounting for less than 1% of all primary brain tumors. Pineoblastomas represent just under half of all pineal gland tumors. Because this type of tumor blocks the flow of CSF, many of its symptoms are related to CSF buildup. These symptoms include the following:
Nausea and vomiting (began happening the day before she was diagnosed)
Headache (off and on for about 2 weeks prior to diagnosis)
Double vision (occurred only after her 2nd surgery)
Eye movement problems, such as trouble looking up (occurred only after her 2nd surgery)
Izabella was having severe elbow pain in both elbows that began the week prior to diagnosis and moved into her right arm, upper back, and neck. She then began having numbness in her left hand and cheek. This was followed by more severe headaches and vomiting. She had already been to a family doctor and was diagnosed with a sinus infection and prescribed Amoxicillin on May 17, 2016. She had also been taken to the ER and was told to rotate between Tylenol and Motrin for joint pain caused by inflammation and that she could possibly have whiplash due to riding a roller coaster. The elbow pain, arm pain, and numbness are not normally related to this type of a tumor, but went away after the pressure was released.
Treatment for pineoblastoma focuses on removing the tumor, radiation of the entire brain and spine, and chemotherapy. Radiation uses high-energy light sources or protons to destroy cancer cells or to slow their growth. Chemotherapy (“chemo”) uses cancer-killing drugs to destroy any remaining tumor cells. Unlike radiation, which targets the area of the body containing the tumor, chemo medicines work throughout the body, killing cancer cells all over the body. At the same time, chemo also kills normal healthy cells, which can lead to side effects. These include nausea, loss of appetite, hair loss, infection, fatigue, and more. Because of this, treatments will often be spaced apart to give the body time to recover between doses. The overall 5-year survival rate for children with pineoblastoma is about 60% to 65%.
Izabella’s surgery was scheduled for May 31, 2016. It lasted 8 ½ hours from the time she was taken back until she return to the PICU. The tumor was located in the very center of 6 vital blood vessels and also had flatten the part of the brain that controls hearing and the ability to look upward and track as “flat as a pancake”, as per Dr. Puccioni. There were concerns of Izabella being deaf, having vision difficulties, being in a coma for 1-5 days following surgery, brain bleeds, and swelling that could cause strokes. A small piece of the tumor remained on one of the blood vessels, but was cauterized in hopes of destroying it. She never did go into the predicted coma state and she is not deaf. She also maintained steady vitals throughout the surgery and did not need a blood transfusion. Izabella did struggle with double/blurry vision, the ability to look up past midline, light/sound sensitivity, the feeling of falling, and impaired balance. These side effects continue to improve every day. She does have intense sharp pains as her brain heals as well. This incision is about 6 inches long running up and down on the center of the back of her head.
Izabella was released from Children’s Hospital on June 7, 2016.
On June 10, 2016, Izabella met with Dr. Lin, Radiation Oncologist. Dr. Lin went over Izabella’s treatment plan, the side effects, and treatment options. It was determined that Izabella would greatly benefit from proton beam therapy, instead of photon radiation. Izabella will need radiation of her brain, her entire spine, and a boost to the site of the tumor. Proton beam therapy does not continue to travel into Izabella’s organs as photon radiation would, but instead stops at the spine. This reduces the risk of secondary cancers caused by radiation significantly, damage to her other organs, and reduces side effects. This also will allow for a more controlled and concentrated treatment to the site of where the tumor grew.
Dr. Lin recommended Scripps Proton Therapy Center in San Diego, California. Dr. Lin will work with Dr. Pai throughout an 8 week radiation program. Dr. Lin will accompany us to San Diego, California. Dr. Lin will then be able to do all follow up care after the initial 8 weeks of radiation in California. Izabella will be receiving radiation daily and will be receiving chemo concurrently one day a week. She will also be working with a physical therapist and an occupational therapist. She may also begin work with an ophthalmologist if her double vision does not improve. Following her radiation treatment, Izabella will begin approximately 6 cycles of chemotherapy for one week at a time every month for approximately 6 months. Plans for chemotherapy are uncertain due to us meeting with Izabella’s Pediatric Chemotherapy Oncologist in Omaha, NE, on June 20, 2016.
Miki, Izabella’s mother, has been with Izabella since the beginning of her journey and will accompany Izabella to California and throughout her continued care in Omaha. Miki herself recently had surgery which used the majority of her family medical leave. Miki will not be able to return to her job prior to her benefit time running out.
The family is needing assistance with travel expenses, living expenses in California and later in Omaha, current bills, medical expenses prior and above what insurance will cover, and other expenses as they occur.
The current plan is to leave for California, pending insurance approval, as soon as 2 weeks from now.
Any donations would greatly help Izabella and her family.
Izabella is a quick-witted 12 year old, who will be in 7th grade. One of five children in the home, Izabella loves spending time with her siblings…Sarah, Azryn, Elexzia, and Jaxon. She also loves the rest of her “siblings”…T.J., Jasmine, and Thomas. Izabella enjoys playing the violin, flute, and singing. She builds Lego worlds and plays Minecraft. Izabella loves going on outdoor adventures, such as hiking, rock climbing, surfing, biking, and swimming. Izabella draws, paints, and does crafts.
Izabella helps run a jewelry company, SIAE, with her sisters and enjoys to art of selling; along with, raising donations for organizations such as the American Heart Association.
Her favorite one liner during all this is…”no worries…it’s all in my head.”
