It’s hard to believe we are coming up on the 12th anniversary of when Tim was first diagnosed with brain cancer. December 31, 2008, Anna and her father drove three hours through a blizzard from the Cape when Tim called to say they had found a tumor on his brain after a CT scan. Emma and Abby were 9 and 6. At this point he was taken by ambulance to MGH where an MRI confirmed there was in fact a tumor. Two days later he had his first craniotomy and a diagnosis of anaplastic oligoastrocytoma was confirmed. Before being able to take him home from that first of many trips to the hospital, he needed a shunt placed to drain fluid. So they went back into his brain on the 27th of January. The late winter through summer months of 2009 were difficult to say the least. First a round of chemo and radiation in February and March. Then a second round of chemo from April until the end of July. All that to unfortunately have more growth and the need for a second craniotomy in August of 2009. Following that was three rounds of immunotherapy that required frequent trips to MGH to have it administered by IV (Sept-Dec 2009, June-July 2010, and Feb-Apr 2011). All of this with recurrent MRI’s and struggles at home as deterioration slowly moved forward. In March of 2012, due to more growth on his brain, Tim went for his third craniotomy followed by another surgery in October of that year to place yet another shunt in his brain. He had now had his brain cut into 5 times! The girls and Anna were emotionally drained.
During the next six years, Anna and the girls spent much time trying to get used to the “new normal.” Anna had to give up her job to be at home full time to care for Tim as it was unsafe for him to be at home alone. He went through frequent and sometimes severe mood changes that made it very difficult at times to even be able to just sit down to dinner as a family some days. However, they never stopped taking Tim out with them to do things as a family no matter how difficult it was. MRI’s during this time didn’t show any significant changes so Tim was set up with a neuropsychiatrist to prescribe medications to help with his behaviors. He was also sent for services in OT, PT, and speech. For a short time he went to a day program to help give him more stimulation and activity in his day, but that needed to be given up due to the financial burden it caused.
Fast forward to August of 2018, an MRI showed that the tumor was now growing and spreading into other parts of Tim’s brain. Anna and Tim were sent home to talk to the girls and the rest of the family because it was felt there was nothing else to be done at that time. In October of 2018, Tim had one final appointment with his neuro oncologist and then was transferred over to palliative care and ultimately to hospice services.
It’s now been two years since hospice started services in the Milligan home. A whole other “new normal” for Anna and the girls to adjust to. Tim continued to deteriorate during this time but in the last few weeks there has been a marked change in his symptoms (such as increased seizure activity, frequent falls, balance issues, and incontinence) as well as continued increase in his overall level of care and it has become too much to manage in the home anymore. Hospice only provides a few hours a week of care and Anna with the help of the girls have been his primary caregivers. Anna recently made the decision that Tim needs to be admitted into a hospice facility. Due to his age, he does not qualify for Mass Health benefits so the cost is astronomical for private pay. This is the most difficult decision that Anna and her family have ever had to make. I know that Anna has never wanted to reach out and ask for help through all of this but there is just no way that any family could hope to cover the costs she is facing. Any small donation would be of great help to Anna and Tim and their family.
- Jan LoCicero
- Ruth Grande
- J/C Morgan
- Maureen Ryan
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