Honored Kid

Phoenix B.

Age 15
Phoenix B. Kid Photo

Location

Chesterton, IN, US

Diagnosis

Acute lymphoblastic leukemia (ALL)

Date of Diagnosis

October 2011

Status

In treatment

Treated At

Riley Hospital for Children Memorial Children's Hospital, South Bend

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My Story

In October 2014, Phoenix's leukemia came back. A relapse. Her only chance to beat cancer now is the bone marrow transplant she had on Feb. 18, 2015.  Children like her need more options... they need a CURE.  Her original diagnosis story is here: We took Phoenix to our local urgent care with odd flu-like symptoms that were getting worse, even with antibiotics, and we thought she may be dehydrated from vomiting. Urgent care sent us to our local ER recommending lab work and told us she would get IV fluids there if need be. The ER doctor took one look at her and told us he couldn’t tell us what was wrong just yet, but he knew that she was extremely ill and would need a children’s hospital. He began drawing labs and doing a spinal tap, suspecting meningitis. We were already surprised and scared. He came back into our room and sat down with a very concerned face, told us that Phoenix’s spinal fluid was clear, but that her white blood cell count was nearly 1 million. He said this must mean she has leukemia. We were devastated, shocked, and petrified. He immediately sent her for an MRI and left the room to call Riley Hospital. We stayed in the room and fell apart, trying to comprehend what was actually happening. When the doctor returned to us he told us he had more bad news. The MRI showed that due to her white count, Phoenix’s brain was hemorrhaging, and already had more bleeds than what could be counted. The Lifeline helicopter team was on their way to fly Phoenix to Riley, and she needed to be intubated and put under anesthesia to prevent her from having a stroke during the transport. It was clear that this doctor hoped she would make it. When we finally got to see Phoenix in the ICU at Riley it was worse than a parent’s worst nightmare. She was intubated, she had 3 central lines going into her chest and arm, was hooked up to a hundred monitors, and her IV pole had 12 pumps going with medicines and fluids. We were told her blood was thickening like molasses because of the white blood cells, and so she was hooked up to an apheresis machine, which literally takes your blood out, cleans it, and puts it back in your system. Dr. Lazarus, the oncologist, told us the blood count had to come down before chemo could even be an option. Her official diagnosis was PH Pre B Acute Lymphoblastic Leukemia. A neurologist came to tell us that the amount of damage to her brain was critical. She said that Phoenix was one of the sickest kids she had ever seen, and for her to survive the damage would be tough. Dr. Ahmad, our ICU doctor told us that the next 72 hours would be critical, and even if she made it through that, there was no way of knowing what her neurological or physical function would be. Ophthalmologists came in and told us there was hemorrhaging on the back of both her eyes, and they didn’t know if she would ever see again. The second day, her chemo began. The ICU team was amazing and we could see they were determined to get Phoenix through. Phoenix spent 12 days on the ventilator, and once her body showed she could breathe on her own for 2 days, she was taken off of the ventilator and moved to the oncology unit to continue her chemotherapy under the care of Dr. Pradhan, and for us to see if she would “come to”. After a few more days of her coma-like status, neurology told us they hoped to see more activity from her, and warned Phoenix could remain this way. We also knew that chemo and radiation would cause further aggravation to the brain. It was at this time that we knew that what we needed was a miracle. We started to see purposeful movement from Phoenix and we knew she was there. She could not talk, drink, eat, sit up, or walk, and she was blinded in both eyes. She had a nasal feeding tube going to her intestines, because we didn’t know if her stomach would function. But we saw smiles, and head nods, and felt hand squeezes, and knew there was hope. The Riley team continued her chemotherapy, and moved her feeding tube to her stomach. Occupational therapy started sitting her up and we saw her cry. Physical therapy had her moving her feet and then bending her legs. Speech therapy got her to swallow some water and jello, and then showed her how to whisper. These therapists started coming twice a day, and Phoenix was responding! And on day 30 we found out that Phoenix was in remission. Dr. Prall, a retinal specialist, came to look at her eyes, and told us he may be able to help Phoenix see again with surgery. After 40 days in the hospital we were discharged to Ronald McDonald House so that Phoenix could continue her daily therapies and wait for her eye surgery. After 60 days away from home, we were able to bring Phoenix home the day before Christmas Eve. For the past 13 months Phoenix has continued down a rough road of chemotherapy and hospital stays. Her eye surgery under Dr. Prall was successful and she regained her sight in both of her eyes. She has suffered extreme pain and discomfort that includes having a chest tube draining for 5 weeks, seizures, mouth sores, feeding tubes, and severe pancreatitis. Nausea and vomiting has had to become a normal part of her life. Last summer she underwent 12 days of full cranial radiation and had to endure weeks of sickness and fatigue afterward. Some days she must take 10 pills as part of her maintenance. Physical, occupational, and speech therapy are part of her weekly routine. October 24th marked one year of treatment, and the anniversary of her diagnosis. Although we know we still have a long road ahead of us, we are here today and Phoenix is still in remission, continuing her treatment. Our family knows that research is the only way we will ever see a cure for kids like Phoenix, and we will be forever involved in raising awareness and funding for children’s cancers. Thank you for supporting Phoenix and the more than 300,000 kids worldwide who will be diagnosed with cancer this year. By sharing the gifts of your time, talent and money with the St. Baldrick’s Foundation, you're supporting research to give all kids with cancer a better chance for a cure.

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