On May 24, 2016, Izabella Phoenix Voelker was diagnosed with a brain tumor

following an appointment with her pediatrician, Dr. Daniel Leonard.

Dr. Leonard sent Izabella to Mary Lanning in Hastings, NE, for a CAT scan and

an MRI which led to the discovery.

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On May 25, 2016, Izabella was admitted in the Emergency Room at Children’s

Hospital in Omaha, NE, under the care of Dr. Mark 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.

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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 tumor.

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)

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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. Bella also had changes with her emotional stability.

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Treatment for pineoblastoma focuses on removing the tumor, radiation of the entire brain and spine, and chemotherapy.

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 continued to improve every day.  She did also have intense sharp pains as her brain healed as well. This incision is about 6 inches long running up and down on the center of the back of her head.

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Izabella’s central line was removed on June 6, 2016. Izabella was released from Children’s Hospital on June 7, 2016.

On June 10, 2016, Izabella began physical therapy, but unfortunately, this loosened the patch on her skull from the EVD, causing a one-way value of fluid creating a goose egg on Izabella’s forehead. Izabella had it drained on June 14, 2016. It then required a third operation on June 16, 2016, opening back up the stitches on her forehead to place a titanium plate inside to seal the hole.

On June 10, 2016, Izabella also met with Dr. Chi 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. Proton Beam Therapy uses high-energy light sources or protons to destroy cancer cells or to slow their growth. 

Izabella needed radiation of her brain, her entire spine, and a boost to the site of the tumor.  Proton Beam Therapy would not continue to travel into Izabella’s organs in the way Photon Radiation would, but instead stopped at the spine with pinpoint accuracy. This also allowed for more control concentrated on the site where the tumor grew. Proton Beam Therapy reduced the risk of secondary cancers caused by radiation significantly, damage to all of her other organs, and greatly reduced her side effects. 

Dr. Lin recommended Scripps Proton Therapy Center in San Diego, California. Dr. Lin worked with Dr. Atmaram Pai Panadiker, “Dr.Pai,” throughout a 30 treatment Proton Beam Therapy program. Dr. Lin travelled to San Diego, California, to meet with Dr. Pai prior to placing Bella in his care. Izabella met with Dr. Pai on June 29, 2016, to discuss her treatment plan.

Prior to leaving for San Diego, Izabella had a spinal tap and had another surgery to place her port for blood draws and to administer chemotherapy on June 20, 2016. Izabella’s spinal tap came back negative for cancer cells. This left two scars on her right side, one on her neck and one on her chest. 

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On June 30, 2016, Izabella had her mask fitted and on July 1, 2016, had it adjusted. Izabella ran through a mock treatment on July 12, 2016, to prepare her for her treatments. Izabella received radiation daily Mon-Friday beginning on July 13, 2016. Due to the rarity of Izabella’s diagnosis, the protocol for Pineoblastoma was written in 2003 and was based on similar brain tumors. The protocol called for a treatment of 36 gray to Izabella’s entire brain and spine. It also included a boost to the pineal region of the brain at 55 gray. Izabella’s family was informed of a new protocol from St. Judes that had been successful on 10 patients with Pineoblastoma that reduced the grays to 23.4. All of the children survived. Izabella’s family decided to split the difference between the two protocols, 28.8 gray, to preserve more of Izabella’s cognitive functioning. There was still a 55 gray boost to the area of the tumor. Izabella rang the bell on August 23, 2016, signifying the completion of her radiation therapy.

Izabella was to receive chemo concurrently one day a week. 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. After careful consideration and two doses of Vincristine, Izabella stopped the chemotherapy during radiation and resumed chemotherapy on September 29, 2016, following a 6-week resting period. 

During these 6 weeks, Izabella was presented with the option of egg harvesting. The chemotherapy drugs that Izabella will be placed on has the side effects of infertility. After meeting with Dr. Stephanie Gustin at the Heartland Reproductive Center, Izabella decided to decline due to having to be administered hormones to stimulate egg production and then put into menopause during chemotherapy.

On. October 3, 2016, Izabella had another surgery to replace a central line for the stem cell removal procedure that took place on October5, 2016. This allowed for Bella to have her own stem cells if she needed them later on due to the chemotherapy. On October 9, 2016, the central line was removed leaving two scars, one on Izabella's chest and one on the left side of her neck. 

Following her recovery time, Izabella begun her 6 cycles of chemotherapy with Dr. Jill Beck in Omaha, NE. This included Vincristine which can cause jaw pain and neuropathy, along with impaired motor functioning, Cisplatin which can causes hearing loss, and Cyclophosphamide which causes infertility, along with other drugs that counterbalance the side effects. Other side effects include kidney damage nausea, loss of appetite, hair loss, infection, fatigue, and more. Because of this, treatments were spaced apart to give the body time to recover between doses, usually 28 days. Blood counts were frequently monitored during this time and Izabella’s immune system was greatly compromised.

Izabella began her first round of chemotherapy on October 6, 2016. On October 15, 2016, Izabella was taken to the Hastings ER and then transported via ambulance to Omaha with a fever. She was inpatient until October 23, 2016, with the Rhinovirus. Round two began on November 3, 2016. She went back to the ER on November 15, 2016, and once again was transported to Omaha where she remained inpatient until November 17, 2016, with a neutropenic fever. Round three began December 1, 2016. This round we preempted the emergency trip to Omaha by getting a transfusion in Hastings prior to a fever. Round 4 started December 29, 2016. This was by far, Izabella’s toughest chemo round. She had a ) ANC count for over a week. She had to have 4 red blood cell transfusions and two platelet transfusions. Round 5 began January 26, 2017. Round 6 began on February 23, 2017. No transfusions, nor platelets were needed following rounds 5 and 6.

Izabella is a quick-witted 13 year old, who is in 7th grade. One of five children in the home, Izabella loves spending time with her siblings…Sarah, Azryn, Elexzia, and Jaxon. 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. After her time in San Diego, Izabella has decided to work with Killer Whales as a career.

Izabella helps run a jewelry company, SIAE, with her sisters and enjoys the art of selling; along with, raising awareness about proton therapy and killer whales.

Her favorite one liner during all this is…”no worries…it’s all in my head.”