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Help Give Little Howell Some Hope

Organized by: Tamara Lackey

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THE STORY:

Howell is 12 years old. He has Stage 4 Pineoblastoma Brain Cancer. He is silly and upbeat and full of life. After four years of treatments, the cancer has spread to his spine. His mom has been told there is nothing more they can do at this time. But there are several possibilities that they can still try for, experimental treatments that should be approved in the next few months. They are hoping to keep Howell feeling as positive as possible until then. Howell was diagnosed at the age of 8, after an MRI done in Asheville, near where they'd lived, showed dangerous levels of fluid on his brain. He had to be rushed, via Lifeline ambulance, to Duke Hospital, where they drained the fluid, put in a shunt, and operated on him for 6 1/2 hours, cutting the back of his skull to remove a tumor. He went through six weeks of radiation every day afterwards, having to be put to sleep every time since he couldn't stay still. They also stayed in the hospital for four months, in-patient, since he would have such a strong reaction to chemotherapy, spiking extremely high fevers every time he'd tried to leave after treatment. After surgery, they lived at the Ronald McDonald house for a year, while Howell struggled to walk again and eat properly. After four years of brain surgeries, chemo, radiation, different courses of treatments and tons of MRIs, Sue learned that Howell's cancer had spread to his spine. She was devastated, as prognosis at that stage is not what they'd been hoping for after so much for so long. Sue and Howell are, as she says, dear friends. Yes, she's his mom, but he's also her best friend. She loves him deeply. She wants to do anything she can to make life easier for him, to get him through what she still hopes is just this extraordinarily tough stage, to keep him as upbeat as possible until the next experimental trial is made available for children his age - something still a few months out, at Shands Hospital, in Florida. She wants him to continue schooling as best as he can - he has been attending classes from Durham Public School at the Hospital, although he's not yet at the grade level she knows for sure he's bright enough to be at because of his health struggles. Sue was able able to work with Duke to get much of their extraordinary expenses managed by North Carolina medicaid, which has been so helpful. But Sue had to stop working a while ago, between the need for Howell's full-time care, all the appointments and treatments. In addition, Howell's dad left them completely a couple years into this, in a move that still shocks Sue when she talks about it. Sue says she has changed dramatically through all this, too - the constant worry, anxiety, physical and emotional effort has taxed her more than she could have ever guessed. She shares that she looks quite physically different now than when Howell was first diagnosed. Even though we theoretically know we are all just one diagnosis, accident, or incident away from a completely different life, it still so overwhelming when it happens. We still feel like, "How am I supposed to do this all on my own?" Like the whole world somehow keeps going when our own world has just stopped and we are suddenly now micro-focused on nothing more than trying to Get Better. Sue and Howell need $5000 to give them a better shot at how life can still change for them. Those funds would cover: - Howell's diet of Pediasure, the only way he receives any nutrients now. He must drink 12 cans a day, which is his entire diet. Sue says they are not members at Costco, but they ask people here and there to please buy cases at a time. They cost about $40 a case, which adds up fast - and consistently. This is a major, constant expense for them. - Repairs to their car, which needs new brake pads and is in "really rough shape". Sue says with all the sounds it makes, she doesn't know if it will stop working the very next day, and she just keeps hoping they will make it to their next appointment. - Enough funds to try to "just make it to Florida", where the experimental treatment for Howell's cancer will be made available in a couple months. Her second biggest fear is that this option will finally become available, and they simply wouldn't be able to afford the trip there. Sue says that when she looks back on everything that has happened since November 19, 2012, when Howell was first rushed to Duke Hospital, she is amazed that the two of them have been able to get this far. She's scared that something will happen before they get a shot at a treatment that could change everything. They just need a bit more help, so they can keep hoping. Can you please help?

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Organized by

Tamara Lackey

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