Help Give Little Howell Some Hope
Organized by: Tamara Lackey
Howell is now 12 years old. He has Stage 4 Pineoblastoma Brain Cancer. He was diagnosed at the age of 9 years old. He is silly and upbeat and full of life. He also gets tired easily, is in a wheelchair most of the time, and feels woozy after walking or even standing for too long. The first description is who he is; the second describes what cancer can do. After four years of treatments, the cancer has spread to his spine. His mom, Sue, 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.
Howell was first diagnosed in 2012, 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. It was a terrifying experience. He went through six weeks of radiation every day afterwards, having to be put to sleep each time since he couldn't stay still. They also stayed in the hospital for four long 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 nearly 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 very best friend in the world. 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. She wants to keep him feeling 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's been attending classes from Durham Public School at the hospital.
Sue was 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 to take care of Howell full time. In addition, Howell's dad left them completely a couple of 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's still so overwhelming when it happens. We still feel like, "Just how AM I supposed to do this all on my own?" Like the whole world somehow keeps going on like normal while our own world has just stopped, and we are suddenly now micro-focused on nothing more than Trying To Get Better.
But as challenging as all that is, nothing on earth can prepare you to see the child you love, desperately, have to go through so much - again and again and again. It's simply heartbreaking.
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, at Shands Hospital. 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 together. 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. 100% of everything donated here will go directly to Sue and Howell. Can you please help?