The generosity and outpour of support was overwhelming and greatly appreciated.
The money we received went towards his first 2 prosthetics, dental bills, some medication that wasn't covered, medical supplies, parking, the increase in gas consumption from travelling daily back and forth to the hospital for chemo and radiation, loss of income, and other necessary expenses.
Neil will need more dental work not covered by insurance or OHIP, therapy, and a properly fitted new prosthetic. These expenses are all about the $3000 we fell short of on the first gofundme.
Neil, being hard working and proud (stubborn) doesn't know we are creating a gofundme. He is overwhelmed (as our the rest of us) and thankful for the support that has already come. However, there are times and situations where you should except the help.
Thank you all for donating and sharing.
If you would like to read Neils full story please scroll down.
Wishing you all health and happiness.
I am sure most of you know Neil's story. For those of you who don't. I will give a brief recap.
In May 2016 Neil began experiencing pain and abnormalities in his mouth. Over the following 8 months he saw at least 15 doctors specializing in different fields from the dentist, oral surgeons, family doctor, emergency doctors, ENTs, infectious diseases, and a dermatologist. He has endured many tests, biopsies, and CT scans. He was poked and prodded. Eating and drinking were a chore and extremely painful. Sleep was nonexistent. He tried to keep a normal life with family and work, but by October he could no longer do this due to the pain, lack of nutrition, lack of sleep as well as the medication.
Finally, early 2017 he was diagnosed with oral squamous cell carcinoma.
He was sent to the Ottawa Cancer clinic at the General Hospital to see a surgeon. The best option for him was what is called a Partial Maxillectomy. This is where they remove part of your upper jaw. Before surgery he had to do more tests and see a dentist and prosthodontist. The dental portion of all this is not covered. They had to prepare his mouth for a prosthetic appliance. To do this his mouth had to be in top shape and cavity free. There would be a total of three appliances. The first one would be brought with us to surgery, the second one would be more fitted and put in a few weeks after surgery and then a final one when all is said and done.
On March 24th Neil went in for surgery. They removed his left upper jaw as well as part of his hard palate and soft palate. Three holes in total. These holes are permanent and lead to his sinuses. The prosthetic appliance otherwise known as an obturator is like a retainer, it replaces the jaw bone, teeth and covers the holes. It has to be adjusted as his mouth heals. (We were there at least once a week if not more). Without the obturator he can not eat, drink, or speak. These appliances are not cheap, each one is approximately $1700.
Both of us are hard workers with benefits. We have maxed our benefits for this year between biopsies, fillings, xrays, cleanings as well as other procedures.
After the surgery we were told he had positive margins. The cancer had spread to areas they could not remove, so radiation and chemotherapy treatments were recommended.
On May 8th Neil began his treatments. He would endure 6.5 weeks of daily treatments of radiation and chemotherapy (cesplatin). After each round of chemo a home care nurse was required to come in to administer IV hydration daily for a week. Unfortunately his veins would always collapse anytime they needed to take blood, give meds, including chemo, hydration or insert an IV. So he had a procedure to insert a PICC line. This is like a permanent IV, but not as uncomfortable and can be left in for a long period of time.
Treatment was brutal. He described radiation as someone holding your mouth open with a lighter inside. Chemo was just as bad. Each round was 5 hours long. The side effects range from nausea and vomiting, hairloss, ringing in your ears and painful hiccups that would last for days. It wasn't long after treatment started that he was no longer able to have the obturator in his mouth because of the sores and inflammation. This made it impossible to eat or drink. They tried a feeding tube through his nose, but that only caused more discomfort. Within a week he had a PEG feeding tube inserted into his abdomen.
He wanted to quit many times and had to be admitted into the hospital close to the end in order to complete the rest of his treatments.
June 22nd was his last day. The next 2-3weeks were up and down and still are. We just got him off hydration but he still has the PEG tube for feeding. I am feeding him 4 times a day. He also gets his meds through the tube as he still can't swallow. Throughout treatments he was seen by a dietician weekly. He has lost 40lbs since surgery.
He is also seen by a speech pathologist. Between the surgery, treatments and not being able to eat or drink he has lost the ability to open his mouth or swallow. There is a new appliance called a Therabite to assist in strengthening the jaw and throat muscles. This appliance is $480, and then there are bite pads $20/4pads. It is not covered by our plans. It is needed so that he can eat, drink and speak again.
It takes about 8 weeks to heal from treatment. He has an appointment with the surgeon on the 17th. We are hoping by then his mouth will be well enough to start using the Therabite and arrange for a new obturator.
For now the feeding tube will stay until he is able to eat and drink enough on his own for at least 2 weeks.
His energy level probably won't be back to norm for a year maybe even 2 years and side effects can last 18 months.
Neil has been on long term disability and I've been receiving Compassionate Care as his caretaker.
Neil's job is physically demanding as a driver for the City of Ottawa. He needs to be alert and fit. As crazy as it sounds to some of us, he would really like to get back to work, routine, and a normal life again.
This has been a very stressful time in our lives.
We are so thankful for all the love and support we have received. It has helped tremendously.
This is a long journey with hopefully a happy ending. The less stress Neil has in his life the faster and easier the healing will be.
So please share, share, share and I will keep you all updated on his progress.