Case Study #11 - John Chatting on Ham Radio

"John Chatting on Ham Radio" 30" x 24" oil on canvas

John Walsh has been very active in the NF community. His son, Patrick lost his battle with NF related cancer on 6-21-2010 when he was 33 yrs old. John has NF and does his daughter Jennifer Walsh. Patrick use to say "Keep up the Fight." and that is what John and his family have been doing ever since. The Walshes have been very active at NF events in the New England area. Their daughter Jennifer has been doing a fundraising bike ride for a few years now raising well over $13,000.00 for NF.

John's Story in his words:

My parents and I first learned that I had NF in 1957. It was not called NF at that time it was called Von Recklinghausen’s disease. It was that year that I had my first tumor removed. It was on my collar bone. I have one brother four years older than I and he does not have NF. My Mom and Dad also do not have NF.

Prep sketch and underpainting for
John Chatting on Ham Radio - 30" x 24"

Over the years I would several have more remove from other parts of my body. The doctors told us only to have them removed if they bothered me. I can remember some kids in school remarking about these big lumps on my arms, some wanted to know if they could catch it. Being a kid myself I use to tell them that they were African Mosquito bites. I knew what I had and at times had to inform the school doctor when he came around the schools for our yearly check ups.

Other than the few operations that I had to remove tumors, I made it through school OK. It was 1969, I was graduating from high school and the draft was on. I was a low number and felt that I should go sign up and serve my country. I had a background in electronics and had my Ham Radio License. I took a test at the military base and they told me they would send me to radio school. I was glad to hear that news. They then sent me for my departing physical. As soon as the doctors seen me they said I could not be in the military because of my condition. I was kind of let down felt rejected or less than. Most guys in the 1960’s were trying to get out of the draft, Strange me wanted to join and see some of the world. This was my first big let because of NF.

I then went into a local electronics school for two years 1969 to 1971. When I finished school I started my own business installing security and fire alarm systems. In 1972 I married my bride Gladys. Through this work I did knew people on the Fire Department and heard that they were hiring. I filled out the application and I got the job as a Firefighter that was in 1973. I still ran my business part time. Also that year I took some classes and became an E.M.T. I was thrill, despite my condition I was moving forward in my life.

In 1974 my wife Gladys and I had our first child a little girl we named Jennifer. Then in 1977 our son Patrick was born.
 

Patrick John Walsh - In Memoriam

While I was on the fire Department I did have a few tumors removed that bothered me while I was doing certain types of work. I was always back to work in a week or so. In 1980 I had some friends that were in the National Guard. They ask me to join too. I told them what had happened in the 1960.s where I was refused do to my medical problem. They told me to give it a try. So I signed and I got accepted in the Army National Guard. I was sent to Fort Sil, OK for basic training. I went through basic training at 30 years old with tumors showing on my body. I made through basic training without any problems. I then came back to Massachusetts to serve with my unit. Within 2 yrs I made it to E-5 Sergeant. I was very happy I had a good job as a fire fighter / E.M.T. my military and a nice family. In 1983 I was having a problem with tingling in my hands and weakness grabbing things. I went to several doctors and they could not find anything wrong with me. I knew something was not right and I was able to get into Mass. General Hospital to get checked out. They found my problem the first day there. I had a tumor between C1 and C2 on my upper spine. They told me that they had to operate right away. I could move the wrong way and the tumor could cut off some major nerves in my neck area. The operation went well removing the tumor and preventing further damage. After the operation I had very limited use of my arms and hands. Because of this I had to give up my job as a Firefighter and E.M.T. I also had to leave the National Guard. All that I loved doing was gone from my life. 

I also had to sell my alarm business, because I could not work. I was told that I was permanently disabled. I did collect for a while and kept forcing myself to do more. I was finally able to get a light duty job in a factory repairing machines. This condition was not going to keep me down. I would have more tumors removed during the 1980’s each time I worried what would happen if I could not work again. I found an answer to this and went back to school part time 1993 while working full time. There were many things going on in my life and another disease that I have started to kick in big way. That was my alcoholism. I drank very heavily for many years and I was not only hurting myself but also my family and friends. I finally realized that this was not an answer to my problems. It was only creating more problems with my health and my family and friends. I stopped drinking in 1997. I did try AA, but for some reason it did not work for me. I just had to wake up and see what was going on in my life and those around me. Our son Patrick told me just before he passed away in 2010, that he was proud of me for not drinking with everything that was going on with him. In 2002 I earned a B.A. from the University of Massachusetts. Through those years I would have several more operations. During one operation to remove a tumor from my leg, that was going to be same day surgery, I woke up 3 days later in the I.C.U. I had another type of tumor on my pancreas called a Pheocromacytoma. I was told they lost me on the operating table and had to bring me back. This Phoe tumor was removed a few weeks later.

John Walsh - Many Faces of NF
Watercolor portrait

In May 2013, I went to Massachusetts General Hospital in Boston to have 3 NF tumors removed. One was on my lower back just up from my tail bone and it was about the size of a golf ball. The other 2 were about half that size and were on the back of my left thigh. The surgery went well. I asked the Dr. if he could send these tumors off to the NF Lab for research and he said “yes.” He told his nurse how to prepare them and how to send them to the NF Lab. So now they have 3 tumors for more research and testing.

At this time in my life I am still able to work in the maintenance trades. If anything happens I do have my B.A. in Sociology / Social Services where I can use my mind if I cannot do physical work anymore. I do have some tumors on my body that give me pain. The worst one is on the sciatic nerve in my left hip. At times it gives me great pain mostly it happens when I sit for over an hour and a half. I have been told many years ago that it is inoperable.
 
For now I mainly worry about Jen and all others suffering from NF. I also have to worry about Gladys as she has to deal with the loss of Patrick from NF and I worry about Jen each day. I hope that the doctors and research can help all of us with NF and that they find new methods to help all those with NF and their families. I’m hoping that the research that I was part of will help find new methods for treating those with NF.

Case Study #12 - Garrett Drinking a Slurpee

"Garrett Drinking a Slurpee" 30" x 24" oil on canvas

I met Garrett through Facebook and was absolutely horrifed when I saw him posting about when hospice would be coming in to help ease his pain. I'm not sure an oil painting really eases anyone's pain, but I have never felt a sense of urgency as I have with this painting. I want Garrett to see all of the different stages and enjoy the final painting. These take me a very long time to do, so I guess that just means Garrett will have to tell the hospice workers they aren't necessary right now.

In Garrett's words:

This is Garrett and if it were not for NF2, I would not have a caringbridge site. NF2 is short for Neurofibromatosis Type 2. This causes benign tumors to grow on various nerves throughout my body. People with NF2 always have these tumors on both the left and right vestibular nerves. The vestibular nerve is part of the acoustic nerve so we usually have little or no hearing. I have no hearing on my right side and only 50 percent hearing on my left side. I have several tumors in my brain and dozens of tumors up and down my spine. I also have these tumors on my arms, neck, side, and back. That's enough about NF2 for now.

In Garrett's Dad's words on June 30, 2014:

Preliminary Sketch

We want you to know it is because of you that Garrett has NOT giving up the fight. He is a true NF2 warrior and he is not ready for hospice to take over. Your encouraging messages have renewed his spirit. It excites him to read and respond to your posts. He enjoys connecting with more people, seeing the run/swim/walk/bike in his honor, chat with friends, talk about sports, gaming and God. The NF2 crew have been an amazing cheerleading squad and he is listening. They understand his life with tumors and pain, and they have been a great source of inspiration. This love and support has given him a HUGE boost.

Today we met with Garrett's primary care physician to discuss our options. We have decided, with Garrett's permission, to give it one more final attempt to boost his immune system. We will be adjusting his pain meds to give him a more comfortable level, and will include home health care to provide a supplemental IV solution to his daily feeding. Garrett has been on minimal medical marijuana for some time, and will have a more deliberate program to see if it will help with pain, nausea and weight gain. He will be sleeping more, but if our efforts work, he might regain some strength and weight to improve his overall health. If we do not see an improvement in the next 6 weeks, we will need to continue our direction into palliative/hospice care.

We do not know how long Garrett will be with us. We know, without a doubt, that God is pleased with Garrett's determination and faithfulness. If he doesn't cross the finish line, we know it is not because he didn't give it his all nor keep the faith. The boy is a true warrior! From now until the AFC half marathon/5k race (August 17th), we are going full steam ahead. Please continue to send Garret encouraging words. He may not respond in the coming weeks if his sleep pattern increases, but please know that our efforts to fight NF2 will continue and we will keep you posted with caringbridge updates.