Prayers and Goodwill for Phil - Brain Cancer Fund

As hard as this may be for you to hear, it was even harder for me to fathom; much less write. I’m Danielle, Phil’s little sister.  I know you all have been worried about our Phil, given all your words of kindness and prayers. My family and I extend our most heartfelt thanks to each of you. It is difficult to keep everyone updated, so my hope with this is to provide an outlet where we can keep all of our family and friends up to date as this transpires.


Phil has recently been diagnosed with a Glioma Tumor in his brain. He was experiencing symptoms that landed him in the ER, looking for answers. It was discovered that Phil needed to undergo brain surgery to remove the tumor that has been causing him so much distress. The surgery took place on Sunday, where surgeons near and far, worked diligently on Phil for over 5 hours. They successfully removed 98% of the tumor, leaving 2% behind due to medical reasons. Phil will also need to begin chemo and radiation in the next few weeks to assist with removing the remaining 2%.

Phil is now in recovery and in good spirits. In fact, his humor didn’t take much of a break as he asked his Mom for a Snickers upon coming out of anesthesia. Oh, Phillip!

His journey is far from over, as he still has medical hurdles to overcome. Some that we just simply cannot get into at this time. However, his recovery time will be, at best, 6 months. We all love him and James very much and want the best for them both. So I am reaching out to you all today to please continue to pray for Phil and James during this very scary time. We have set up this Go Fund Me page in hopes to raise money to help cover some of their expenses during this recovery time. My wish for them is to focus on each other and on Phil’s health, rather than worrying about bills.


I will continue to update you all on how he is doing on this page. Again, I thank you all for your well-wishes and prayers. You all mean so much to us.  

xo, D

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********OCTOBER 2019 UPATE********

Hello Friends, Danielle here again. Today is October 5, 2019, and it has been 300 days since Phil had his first surgery and his journey began. Many of you have reached out to ask how Phil is doing and to share your support, and it really shows just how much he is loved and how vast #TeamPhil truly is.
 
I recently shared a short update on August 28th with some exciting news that Phil had started his new method of treatment, Optune Cap: Optune is a wearable, portable FDA approved treatment for GBM where adhesive patches are applied to the patient’s scalp. The patch transductors deliver low-intensity electric fields – called Tumor Treating Fields – that stop the growth and division of GBM cells. Research has shown patients as a group who use Optune had a better quality of life without many of the side effects of cancer drugs. The reasons why we were so motivated are clear.


Phil and his doctors worked for weeks together to prepare for this new treatment. Once they were ready to start, a Device Support Specialist was scheduled to come by and provide in-person training to teach Phil and his caretaker, his Mom, how to prepare and use Optune. What happened next, no one ever expected nor were they prepared for.
 
The next morning, Phil woke up and noticed his left eye was slightly swollen. Obviously concerned, they contacted Phil’s doctor and Optune team who instructed him to remove the cap right away. Later that day the swelling got worse, and by the next morning, the swelling had moved below his eye and began moving to the right eye. The most common side effects when using Optune alone were scalp irritation (redness and itchiness) and headaches however the Optune medical team working with Phil had said they have never seen a reaction as severe as Phil’s. Because the swelling had not gone down and was causing pain, Phil went to the emergency room on Friday morning.


At the hospital, doctors ran tests and took a CT scan. It was confirmed Phil had had a bad reaction to the cap which caused an infection, but they were not sure what type of infection it was. The CT scan showed the tumor had not changed in size, and the doctors gave Phil antibiotics for the infection and sent him home. The next day, the swelling began to disperse and started to clear up.


By September 3rd there is still a small bump on his head otherwise, nearly all of the swelling was gone and Phil was feeling back to his good ol’ fun self and out to lunch.  Then on September 5th, he enjoyed a beautiful day at the zoo.  


September 9th the area became red and the bump had reappeared, and by September 12th the redness and swelling had gotten worse.


Slowly getting worse day by day, Phil’s mom had been in contact with his doctor reporting any changes. On Monday, September 16th the bump had become redder and the swelling grew bigger, starting to form into almost a boil-like pimple, protruding from his head. The next morning it continued to get worse with pus forming on his scar line. Phil was out to lunch with Mom when his doctor called advising him to go to the hospital. Phil went and checked into the emergency room.


When Phil first checked in he had blood tests and an MRI, there were also many infectious disease doctors who visited and spoke with him regarding his reaction during his visit. The MRI scan showed the tumor, again, had not changed in size but the infection had reached the bone. Doctors then prepared for surgery to clean and remove the piece of skull that had become infected. Surgery was the next day, September 18th @ 5:30 PM and lasted for two hours. Surgery was a success and Phil spent the night comfortably in the ICU before moving to his own room the next day and resting.


It’s no secret Phil’s a fighter and strong as hell so unsurprisingly for him, surgery did not keep him down long and he was up walking the halls again the next day. After the weekend Phil was ready to go home on Monday!  :)  woohoo!


While at the hospital, Phil had a PICC line inserted in his arm to be able to continue antibiotics at home until October 16th. For now, there will be no chemo or radiation until November when chemo will start again. We are also still waiting on the results of the culture sample to determine the infection. In the meantime, Phil has follow-up appointments for the next 8 weeks and his main focus is to recover and rest before his next surgery. Doctors have planned a follow-up surgery, a cranioplasty in 3-4 months to repair the bone.


Three hundred days... To think it feels like just yesterday this all became our new normal but it has been almost ten months, and the fight is still only just beginning. Like I said before, it’s no secret Phil’s a bad-ass and kicking cancer’s ass, but the fight is 1000x stronger with all of you. All of your messages, calls, visits, donations, homemade cookies and most of all love and support mean so much to Phil, myself and all of our family we simply couldn’t thank you all enough. We couldn't do it without you. 

The road may be long but we’re only getting stronger! #TeamPhil #LetsGoPhil #FUCKcancer

xo, D