Jonathon’s Story

Site created on January 28, 2018


This web site set up by Jonathon's daughter, Katelyn as was the site  for Go Fund Me.com



Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting. Keep on reading for more info!
As many of you know, Jonathon was treated for squamous cell carcinoma of the neck about 10 years ago. Although it wasn't the smoothest process, he passed his five year mark cancer-free, and no longer had to participate in screening tests.

However, this past week he was diagnosed with a second cancer after an emergency trip to the hospital. He was rushed in because of the alarming amount of blood he was losing and coughing up. After a brief surgery to stop the bleeding, the doctors found a large tumor (about the size of a walnut) that spanned from his voice box, tongue, and sides of his throat. Because the tumor could rupture in the future, a tracheostomy was placed so that his airway would be protected in case of another emergency.  A trach is a tube that is inserted through an incision in the neck and runs down the trachea to allow the passage of air. It is expected that he will live with this (and a newly "installed" feeding tube) until the end of his treatment. Not only will this affect his everyday life, but it raises the risk for participating in his favorite hobbies - sailing, skiing, car racing, and hiking. 

After several discussions with family and doctors, he has decided that the best treatment option would be to initially pursue chemotherapy, although it is unlikely to cure the cancer on its own. Surgery right away would be extensive with devastating side effects, and low chances that it would fully eradicate the cancer. Radiation would be very aggressive and potentially damaging since he went through heavy radiation during his first treatment 10 years ago. Our family is hoping that chemotherapy will be able to shrink the tumor enough so that the possibility of surgery or radiation won't be so harmful in the future.

After a long and tough stay in the hospital, Jonathon is finally ready to come home. But with a new trach and feeding tube comes lots of equipment and supplies. We are hoping through the help of our family and friends to alleviate some of the financial burden and make life a little more comfortable for Jonathon as he embarks down another difficult path. Our family loves him very much and wants to see him as painless as possible. He is a great friend, dedicated father, and loving husband. Jonathon has given up so much in this process, and we are hoping to make life a little easier for him.

We have set up a GoFundMe page: https://www.gofundme.com/jonathon039s-road-to-recovery and greatly appreciate any and all donations made on his behalf! If you are not able to contribute financially, we ask that you check back to this page and see if you are able to contribute in any other way, such as giving rides to or from doctor's appointments or helping out at home with chores or just plain visiting Jonathon and raising his spirits. We will post updates accordingly. In the meantime, we are also looking to raise money for his new life with a trach. So far, our list includes:
- an incline adjustable mattress to help him sleep
- a humidifier (UPDATE: taken care of)
- shower and water filters to take the bad chemicals out, leave the good minerals in (UPDATE:taken care of)
- a juicer (UPDATE: Thank you for your generosity Erin McCarthy and Sadie Anderson+family!)

Thank you for your concern and taking the time to visit this page. We hope you are able to contribute in some way and appreciate all help and well wishes!

2/17/18
Many thanks to all of you who have come to this page to see how I am doing. At this point in time, I just had my second round of chemo treatments yesterday which included two new chemo drugs for me. The drugs are expected to have worse side effects than the previous drug I was given so I am not certainly looking forward to that. Generally I feel fine most of the time but tire easily and have a tough time speaking so I depend on a pad of paper to hold up my end of a conversation. Cards, emails, text are certainly welcome but I would also love to have visits but just no longer than 30 minutes or so. Rebecca has been home with me since the 18th of January and she really needs to get back into her office in St. Albans. I am not able to eat anything by mouth and have a feeding tube in my stomach along with a trach tube in my airway so that I can breathe. I can take small sips of water but only water as I can easily aspirate. The goal here of the chemo I am told is to hopefully shrink the tumor on the back of my throat to get it to a point where it can be more safely removed without having to remove my voice box and tongue. Chemo treatments will last another 6 weeks or so and then a scan will be done to determine how much the tumor has shrunk. More chemo may be in my future if the doctors decide to shrink the tumor further. A PET scan was performed this week to see if the cancer had spread to any other parts of my body. Good news....it has not! Much relief on my part. Radiation is not part of the treatment at this point in time due to the amount of radiation I received 10 years ago in my first battle with this cancer. Apparently a person's body can only tolerate a certain amount of radiation in a lifetime.
My dear wife, Rebecca has been a rock thru all of this and our children, Katelyn and Jeremy have always been by our sides to help out as needed. Of course all of you who have either contacted us, visited, sent emails, texts, offered rides to the hospital or doctor appointments, visited this web site, donated to the cause have all helped our family get thru this and it is GREATLY appreciated! I will beat this cancer for a second time!
I do anticipate being up and about this Summer but am not making any plans to be on the water this Summer until I am cleared by the doctors. However I will have to be taking it very easy so I would still appreciate everyone's help with things around the home, rides to doctors, etc.
Our boat, Prime Time will be going in the water and will be raced by our crew with a good friend to take my place at the helm. Our Nacra catamaran will not be going in the water and I do not know if I will be teaching sailing down at ISS this Summer. So some slight changes ahead for me but I anticipate a full recovery and ready to go for the following Winter and beyond.

Newest Update

Journal entry by Jonathon Haas

Well friends and family, 2023 has been a wild ride for me. I don't know where to start, so I'll start from the top down. It has finally been determined that I do NOT have Parkinson Disease! Of course that is great news! But 2023 brought me a whole host of issues. I am having issues with my vision...seeing double after a long day. Very disturbing. I have had some tests done and indeed my left eye no longer lines up with my right. At one exam, the doctor put some kind of clear patch on my left eye glass lens that has vertical lines on it. I have an appointment this month to see another specialist this month so I'll keep you advised of that. 

Remember my first cancer 16 years ago where my ENT doctor removed seventy three lymph nodes from the right side of my neck? To date, no medical person I've asked has been able to tell me how big a lymph node is. Anyhow, when you remove seventy three of something out of a persons body, that creates a void. Over the years, what has filled that void is scar tissue. Last Memorial Day weekend I experienced what is called a TIA...a mini stroke. Off to the doctors again and after many tests and exams, the vascular surgeon has determined that the scar tissue is strangling my two carotid arteries that go up both sides of my neck. From the pictures and measurements taken, the arteries on both sides of my neck are extremely blocked. I won't get into numbers but I am basically a walking time bomb. The vascular surgeons are debating whether to operate because of the proximity of my arteries to the scar tissue, but hopefully I will have some kind of answer this month. Since Memorial Day, I have had three more TIAs but less severe than the first. All though, have taken bits and pieces of my life away from me. My gyroscope that keeps me upright doesn't always works as it should and I walk like a drunken sailor. Other little things in my life have changed. I have several appointments this month dealing with that. I am wearing now on my right wrist, what I refer to as my Dick Tracy watch, for those of you who are old enough to remember Dick Tracy. Who would have thought back then that someday humans would have a watch on the wrist that was a phone? Besides doing a whole lot of other things, my watch has a special red button on the side of the watch. If I feel another TIA coming on, I can press that red button, which will connect me to a special service that will automatically contact 911 along with my wife and children. The watch has GPS in it so emergency services will know where to find me. So far I have not needed to press the button but it is good to know that I can activate to speed help to come to me. I pray that I never have to use it.

The after effects of both cancers continue to hinder my life in one way or another but I am trying to deal with them the best I can. My family and friends who are around me have been very generous and understanding of my situation. It feels fantastic to be loved!

I am having prostate issues as some men my age do, but my Urology doctor is working on that issue also.

I've decided not to ski yet this year until my artery situation is cleared up as if I were to have a TIA up on the mountain, I don't feel confident that an ambulance can get me to the medical center in time. So I am trying to stay close to home for now. But the moment a solution has been put in place...I'm off to glide down the mountain on my skis.

During last Summer Thursday night sailboat races, Jeremy and I have been trading off skippering the boat and despite some minor squabbling...as one would expect between father and son...he will be ready to take over the helm and other duties, should I have to get off the boat for my medical issues. I have full confidence in him!

Sadly, I have given up car racing because of my present condition but I still enjoy going with Jeremy to the races and watching him zoom around the course. Car racing was a great experience for me and I am very grateful to my son for having allowing me to drive such a fast car.

I have gotten way out of shape physically and lost a lot of weight but I have started a training program with my daughter who is trained in the field and look forward to getting feeling better and putting on the weight...in the proper places.

GREAT news! This past November, Rebecca and I were blessed with our first grandson! Riley came into this world as healthy as could be and Brittney & Jeremy could be any happier! Rebecca and I just went up and saw them yesterday at their home in Grand Isle and Riley is doing great and growing. It is amazing to me how small his fingernails are! So very enjoyable to just watch him and listen to him. We look forward to the coming years and spoiling him! LOL

That's it for now...except thank you to all that have hung in there and supported my family and myself through my health issues over the past sixteen years. I...and the family really appreciate that and are very grateful that we have you around us! Bless you all!

Sans Doute,
Jonathon










 
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