Wayne Wesley and Freda Johnson Cancer Relief Fund

$3,611 of $25,000 goal

Raised by 30 people in 1 month
Created July 15, 2019
WWJ and Freda
on behalf of Wayne Wesley Johnson
Recently Updated!

There are heroic stories everywhere. None can be more heroic than the story of this couple.

Wayne Wesley Johnson and Freda have been together for over 23 years.

Freda was in remission for her first bout of tonsil cancer when they met.

Ten years later she was found to have cancer on the other side of her neck and went through major surgery and additional radiation to remove it.

Since then, she has had two more extremely radical procedures to deal with recurring cancers on her neck, including surgeries and radiation. One such surgery, also involving facial reconstruction, lasted 18 hours. That was in 2010. She has since been in remission .

But now, some serious new developments have arisen. Most of you know that 13 days ago, Freda was rushed to ER following an extreme oral bleeding episode which took place at a local Walmart/Subway. Much blood was lost at that time. She was rushed to UNM Hospital in Albuquerque where she was then transferred to ICU. She has since been treated for sinus infection (strep) and aspirational pneumonia, caused by exceessive blood into her lungs. She will hopefully be released today.

In preparing for her release, she was notified this morning too, that a call came in telling her that her Dad had just passed away just 6 weeks prior to his 100th Birthday. She is saddened that she wasn’t there for him but now needs to prepare for his funeral.

Freda may be released from the hospital today however there’s more to the story. Her MRI’s indicate she has a tumor in her mouth which needs a biopsy and subsequent treatment to be performed and managed only by Dr. Boyle, her Head & Neck Oncologist at Memorial Sloan Kettering in NY/NJ. He is most familiar with her prior surgeries and radiation treatments and knows what can and cannot be done to treat Freda going forward.

Wayne and Freda will most likely have to spend a great deal more time on the East Coast than originally anticipated, particularly if her biopsy turns out to be cancerous and requires aggressive new treatment. Even if it turns out to be benign, removal may be required to prevent obstruction of her air way. In any case, this is not good news. We pray everything will work out for the best and Wayne & Freda can meet this new challenge successfully.

Last year, Wayne was diagnosed with prostate cancer and spent several months undergoing concurrent radiation and hormone treatments, and coping with the many debilitating side effects. The side effects, like fatigue and others have made daily functioning, performing and teaching extremely difficult. You can’t sleep off this type of fatigue.

Wayne is an award winning guitarist. He has led an ambitious and successful dual life as both a businessman/CEO, 6 decades as a musician, recording artist and significant guitar collector and instructor over the years. Wayne started collecting guitars before it was fashionable to do so, starting in the early 60’s. He had built quite a collection early on.

He retired from the Johnson Scale Co. and Pennsylvania Scale Companies , where he served concurrently as CEO for over 17 years. During 1979-80 he even managed to squeeze a few tours in as drummer with legendary guitarist Les Paul.

Freda, once a marketing expert for a fortune 500 manufacturing company and later and Administrative Assistant to a major accounting firm, became fully disabled in 2006, following a Cancer treatment that rendered it difficult for her to speak clearly and have people understand her.

Wayne and Freda moved comfortably from NJ to NM following the sale of the businesses he was involved in and after 911 when few new job opportunities were available and at a time when the country was headed into recession, particularly back east in New Jersey.

One would ask, ‘Why does this couple need financial assistance when both were highly successful in business and in their careers? Did they make a bad business decision, bad investment, or squander their earnings? The truth is heart wrenching.

As life would have it, Wayne’s years of unresolved, contested, costly and often re-litigated alimony disputes with his previous wife finally took their toll and in the end a bankruptcy and home foreclosure in Santa Fe, transpired. Wayne’s valuable ‘Johnson Guitar Collection’ was also confiscated by the courts and liquidated by the courts enriching a dozen lawyers where the battle lingered in two states.

Ultimately, Wayne and Freda were briefly living off food stamps, trying to put their lives together and back in order. Wayne was also dealing with situational PTSD and Freda with ulcerative colitis and the head and neck cancer recurrances.

The road back has been challenging both physically, emotionally and financially. Those trying to make a good living in the music industry know how difficult it can be. Wayne works hard to keep his calendar full of performance dates of all types and continues to teach. At 68 years old and with recent health setbacks it has been even more difficult to survive let alone thrive. But it’s a profession where Wayne can do and enjoy performing his music until his last fan stops showing up at his performances.

https://waynewesleyjohnson.com/

Several trips back and forth to Cancer Specialists at Memorial Sloan Kettering in NY/NJ for treatments have been very costly and not in the budget. For a number of reasons, they can’t afford to live back east by the doctors most familiar with the nuances of Freda’s level of required care.

Wayne and Freda have spent a great deal in order to address their illnesses and have now come to a point where supporting themselves and Freda’s need for continuing treatments, has left them upside down with negative cash flow, mounting medical bills and meeting their general monthly living and financial responsibilities.

Now, Freda needs to plan on spending a great deal of additional time with her oncologist in New Jersey where she started her treatments. The couple may need to look into extended stay hotels which are costly while Freda undergoes evaluation, testing, and hopefully, treatments at Memorial Sloan Kettering. Hence the need to raise the funding goal.

They have essentially ‘used up’ their MSK and ASC Grants on their prior hospital visits back east. Freda needs to return to MSK for treatment. Travel is time consuming, costly and includes things like hotels, air fare, rental cars and gasoline, etc.

Wayne, as a musician, has done his best to play wherever he can. However, it is difficult to play steadily when his health and their treatments have interfered.

They now need our help. There is limited insurance and they get by on donations and Wayne's performances.

Time is somewhat critical. The money we are trying to raise is to pay for Freda’s continued care and help relieve the couple of their current financial stress and difficulties in meeting their current monthly expenses. Additionally, it is hard to generate income when so much time is spent concentrating all of their efforts on just getting well.

Please be as generous as you can. Anybody that knows them will appreciate how generous they have been in the past.

If you have other ways of helping out, Wayne Wesley Johnson is on Facebook or contact him through this campaign, please.

Wayne Wesley and Efida Johnson
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Maxillary Biopsy came back positive for squamous cell carcinoma. We sort of expected it, but are disappointed. That makes the challenge more difficult. Freda gets her 3 Tesla High Resolution MRI today so that the Radiation Oncologist has what she needs for her appointment on Friday. Praying that her cancer will be curable, and with little disfiguration as possible if the docs agree she needs surgery, too.
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Freda gets her 3 Tesla High Resolution MRI tomorrow so that the Radiation Oncologist has what she needs for her appointment on Friday. Praying that her cancer will be curable, and with little disfiguration as possible if the docs agree she needs surgery, too.
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Update:
Freda had a meeting with Dr Michel, the chemo ‘Medical Oncologist’ at Memorial Sloan Kettering on Friday. He was encouraging and said he thinks chemo up front to shrink the tumors (4 in all), might help further identify and establish margins for surgery. He will review her images and consult with the team, and may make that recommendation. Freda meets with the radiation oncologist the end of this week, and with the dental experts next week. Once they have all reviewed her condition, the team will meet and come up with the plan for her treatment which is thought to begin sometime in September. We will return to NM for a few weeks while they’re reviewing her treatment plans. I have some contracted performance engagements I need to fulfill in NM first week of September, too.

I just hope and pray Freda doesn’t have to have radical surgery. It looks like she most likely will have. Since there were big stretches between her two prior radiations 12 years and them 10 years, the Doctors are not quite as worried about necrosis if they use new Proton radiation as part of her treatment. Dr Michel said the goal is to cure Freda’s cancer. She has many obstacles to overcome. They don’t yet know if the cancer this time is a reoccurance, a new occurance or perhaps due to a reaction to previous radiation treatments. Will know more, soon. In any event she is in for a long stretch of treatment. We will be spending a great deal of time back east at MSK. It is going to be very costly. All the donations we have received from friends, family, fans, classmates, fraternity brothers, business associates, etc., are very much appreciated. We need to focus on Freda’s health and treatments, not on our financial worries. Everyone’s donations, prayers, and expressions of love are gratifying and appreciated so much by both of us. Thanks so much. I want my beautiful wife to be well and ok.

PS. I just came off 7 months of hormone treatments and ‘Precise’ aka ‘Sharp’ (Cyberknife-like) radiation for prostate cancer. Good news is the MSK Docs said my PSA levels are where they need to be, less than 0.05%. No current sign of cancer. Dr Marciscano is pleased with the results of my treatments.
However, I went thru extreme fatigue and considerable weight gain. I have ‘Metabolic Syndrome’. I am embarrassed by my 25+ lbs of weight gain, my A1C is 6.7% due to changes is metabolism. Testisterone is 6 so I have zero energy. My Cholesterol, triglycerides, glucose levels are all out of whack. Dr. says that will all stabilize once my body readjusts as the hormone treatment wears off...about 6 months. I can’t wait. Foot neuropathy from the treatments has been very painful. I feel like I am walking on broken glass or hot marbles. I need to focus on Freda and getting her well. Hard to do when I too, am not jumping fences. I know my side effects will lessen. I have to work on the weight loss and hope I am not now diabetic as a result of my hormone treatments. Lots of challenges ahead.
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Not good news at all. Freda has a cancer recurrance, a maxillary squamous cell carcinoma tumor. Dr Boyle is recommending a 4 hour surgery in late September to remove 95-99% of the tumor, 75% of the roof of her mouth and half her upper teeth. She would have chemo and 4 shots of radiation. Could potentially end up with a hole in her cheek. This approach may get her 2-5 years life expectancy. Potential for radiation Necrosis is a concern. If she does nothing, may only have a year.
She can go a paleative (sp) approach with just immunotherapy and chemo and radiation but success would be less likely given her situation.
We have appointment scheduled with Dr. Lee-radiation oncologist, Dr. Michel-chemotherapist, Dr. Huryn- Maxofilial (prosthesis/dental/plates, etc.)
Looks like we will be staying in NJ at least until the 27th of August. We need to get back to NM by Aug. 30th.
If Freda chooses the surgery route Dr Boyle is away for two-three weeks so that would have to be scheduled for sometime in late September. We would have to return to NJ then. She would be hospitalized for about a week...followed by chemo and radiation. Very bad situation.
We are both saddened with this news. Her options are limited and the outcome unpredictable. Our hearts are broken with this unfavorable news. We anticipate a few months of care/treatment at MSK in NJ. All donations are appreciated and going for a worthy cause. Thank you! Wayne & Freda.
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$3,611 of $25,000 goal

Raised by 30 people in 1 month
Created July 15, 2019
WWJ and Freda
on behalf of Wayne Wesley Johnson
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