Judy Neely is one of the most beautiful persons that I know. She has a sweet spirit, cares for others, is a strong Christian and has strong Christian values. She is beautiful inside and out. That is why I married her 44 years ago. The picture above is of Judy and me when we were married. My wife would probably be very mad at me if I provided a picture of her in her current state.

Update 31 July 2021
Judy was discharged from the hospital today and is home.  The pathologists were not able to classify the lymphoma other than possibly Peripheral T-Cell Lymphoma.  We and the oncologists working on her case discussed possible treatments.  Judy did not want treatment with the chemo cocktail that was proposed as she is concerned that in her present condition the side effects could kill her.  So we are beginning non-conventional treatment of this lymphoma under the supervision of one or two professionals in the field of cancer treatment.  The oncologists at U of I hospital were successful at improving her condition with intravenous steroids and other drugs so that the inflammation is down and the activity of the tumors has been suppressed some and we are grateful for that.  Now begins the serious treatment of this lymphoma with non-conventional methods.  This is an aggressive cancer and this will be expensive but we pray that God will allow it to be successful.  I am changing the goal to $25,000 as although it might cost more $25,000 will provide a great deal of help.  As always your contributions will be greatly appreciated as will your prayers.

Update 25 July 2021
Judy is in the hospital in Iowa City.  A CT scan Friday night revealed several masses, one on stomach, one around a kidney, one around the spleen, and a few small ones on the lungs.  These have been there for several weeks but are slowly getting worse, apparently.  A biopsy will be done tomorrow (Monday) on one of the masses.  We will see what they have to offer here but it will be chemo and Judy doesn’t want strong chemo.  Had a long discussion with a Dr, Internal Medicine, today.  He thinks this new cancer (the masses) might be B-Cell lymphoma, but won’t know until the biopsy has been done and analyzed.

Update 20 July 2021
I spoke with Dr. Paul Zhang of Omega Precision Oncology in Houston last night. He informed me that extracorporeal photochemotherapy (or just photopheresis) was developed at Yale (where he went to medical school) by a physician there and that it was developed to treat advanced cutaneous t-cell lymphoma.  He also informed me that MD Anderson in Houston does have the equipment to do photopheresis.  Judy's cancer should qualify for treatment by photopheresis so I am investigating.  I asked Dr. Zhang for a contact at MD Anderson with whom I could discuss Judy's condition and the appropriateness of photopheresis and am waiting for his response.

I also contacted another clinic that is a suburb of Indianapolis.  They have no availability until the middle of August but put Judy on a waiting list so that we might go over for a consultation sooner than that; he unfortunately doesn't do phone consultations.

I am contacting an Italian oncologist who has been very successful with his protocols.  We might do consultation with him.

Update 18 July 2021
We had a zoom call with a physician (dermatologist/oncologist) at MD Anderson on Tuesday the 13th of July 2021.  The recommendation was to do a biopsy and then put a cocktail of different chemo drugs together and do chemotherapy.  Judy does not want to do strong chemotherapy because she is so weak.  We are doing some things locally and might discuss having the mass that is on her stomach removed…only a consideration.  We are still planning to go to the clinic in Florida for treatment which will build her body up and eliminate the cancer, which will take time, as soon as the needed funds are available.  There is a local clinic in Dubuque that can provide IV therapies that we will pursue next week.  We really appreciate those of you who have read this and have contributed to this fund for her care; at this time we just don’t have the resources that we need for the treatment that she needs.  We also greatly appreciate the prayers of many of you.  Many generous individuals have contributed to this fund for her care and we are deeply grateful.

Update 12 July 2021
We have spoken with the medical director of a clinic that we are interested in for treatment in Florida.  According to Dr. Garcia the treatment to address the issues behind the cancer and the cancer  would take about 8 weeks in the clinic.  This clinic uses many different treatment protocols and addresses underlying issues that can be causes of cancer.  The cost for 8 weeks will be about $40,000.  Insurance will not cover it and we will have to pay it.  I have raised the goal to $40,000 so that we can cover the expense over the next few months.  As I have said in the summary and the journey sections, if you would like to contribute we would greatly appreciate your help.  Regardless, we covet your prayers.


Summary
Judy was diagnosed with cutaneous t-cell lymphoma (mycosis fungoides) in January of 2014.  Together we have fought this cancer for 7 1/2 years.  This battle has included over a year of chemo, many treatments since August 2015 at MD Anderson in Houston with electron radiation, two weeks of conventional photon radiation (x-rays), and other types of treatment.  Last week, on July 2nd, she was in the hospital and remained there for about four days because of hypercalcemia.  While she was there the physicians found palpable masses in her abdomen and a CT scan revealed several masses attached to her lungs, liver, pancreas and a large mass pressing on her stomach.  Whether these masses are malignant or non-malignant is not currently known; however, physicians assume that because of existing lymphoma they are malignant masses.  We will be working with physicians at MD Anderson and others to create an integrated treatment plan.  Judy does not want to do more chemo or photon radiation.  Dr. Julie Vose in Omaha, NE, and I have had several conversations in the past. She is an oncologist and a hematologist. She told me that it is extremely difficult for her to put this cancer into remission using the treatments that she provides (which would be chemo). So at this point we need to have a multifaceted treatment plan so that Judy has a fighting chance; that will not be just chemo and radiation. I am in the process of trying to figure this out; discussions with physicians at MD Anderson next week (Tuesday the 13th of July) and subsequent discussions and possible visits will provide us with what they perceive as options for treatment, and we will go from there. Contributions will be greatly appreciated, and if you want to consider it a loan I will repay when I can; as I said, I just want to give my wife the best possible chance make it through this. We know that God answers prayer and we have experienced answers to our prayers. I know that God could heal her in an instant as Jesus did. I also know that he can allow healing to take place.  I pray for guidance for myself and for any professionals searching for the best treatment plan for her cancer. Please pray for us both. Thank you for your prayers and if you can contribute, your contributions will be greatly appreciated.

The Journey
Things were rough for many years but when she was diagnosed with cutaneous t-cell lymphoma (mycosis fungoides) in January of 2014 life changed. The dermatologist who did the biopsy that confirmed t-cell lymphoma put her on methotrexate with folic acid for folate rescue. That actually made the cancer much worse because as I found out a few years later folic acid can cause cancer and her liver could not metabolize folic acid well so it caused tremendous growth of the cancer. After six weeks on the regimen the cancer was all over her body, so she decided to go to the lymphoma clinic at the University of Iowa Hospital and Clinics in Iowa City. At that time she was going through three boxes of bandages from Dollar General a day. (Many people will remember helping find and buy boxes of bandages that she used at Dollar General stores in many places besides Cedar Rapids.) After the appointment in Iowa City she started chemo (Doxil) the next week. It was very effective at first but became ineffective. Over the course of the year she had Doxil and Gemcitabene; neither would put the cancer into remission. I then found a clinical study published in the late 1990s where class I, II and III steroids were used and put 63% of patients in an earlier stage and 50% of patients in a later stage into remission within 3 months. Steroids worked well for her but she had been told 2 weeks on then 2 weeks off. The protocol for the study was continual use until the steroid became ineffective, then off for several days, then back to continual use. We discussed it and she decided to get off chemo and use steroids. This protocol worked really well, but unfortunately didn't put the cancer into remission. After a year of use the skin and capillaries on her arms became so fragile that the capillaries would break and the skin would tear causing lots of bleeding. So that protocol had to stop. At that point she did not want to do any more chemo so we tried an non-conventional alternative treatment. It was extremely effective and amazingly it eliminated the cancer almost completely in five weeks. We saw cancer disappearing in 24 hours. It was one of the most incredible things I have ever seen. But because it made her sick with nausea she stopped after about two months. She was pretty stable for about six months and in the lymphoma clinic after not having been seen for six months they were shocked at how well her skin looked; very few signs of mycosis fungoides patches.

 

During the first year of treatment with chemo I had done considerable research on conventional treatments and read a number of clinical studies published by Dr. Madeline Duvic at MD Anderson. Dr Duvic is one of the recognized authorities on mycosis fungoides. I also found that they were doing low-dose total-skin electron-beam radiation treatments. We discussed it and decided to go to MD Anderson in Houston. The first week of August was our first appointment. Judy was not too interested in a treatment proposed by Dr. Duvic due to the side effects. And we found out from Dr. Dabaja, the radiation oncologist, that it would require six weeks to do the low-dose total-skin electron-beam radiation treatment. We said that was impossible and she suggested doing spot treatments - something that I had not read about. So for about five years she was treated at MD Anderson with electron radiation spot treatments; the last treatment at MD Anderson was in April of 2020. It has been a very effective treatment for management of this disease.

 

All along we have been diligent with diet - strictly organic - and certain kinds of foods we don't eat. We have followed a cancer diet most of the time. Sugar is out, and high glycemic foods are for the most part out. And certain other foods are out. And that has helped.

 

When she was first diagnosed in 2014 I was working at Raytheon in Omaha on a contract. My management were very kind and let me work remotely after I told them about my wife's diagnosis. So I could be with her and take her to chemo treatments. In June of 2015 my contract with Raytheon ended as the project was nearly completed. Judy was still working and had insurance through work at PCI that was covering the expenses of cancer treatment in Iowa City well. I was not able to take one of two jobs that had been offered to me because they were out-of-state and I could not leave my wife and I could not take her with me because her physicians were here and she had a job that provided our medical insurance. So I took over a year off and looked for something local. At this point she was using steroids only and that was controlling the cancer well. However, in the spring of 2016 she had to stop the steroids and we used an alternative natural treatment that was very effective and provided about six months with very little cancer. So at that point life wasn't too bad. I did a short contract job at Collins but had to take a job in early 2017 as we had to have money coming in. I took a job in California that was offered to me; it lasted six weeks because it wasn't what it was supposed to have been (I was supposed to have been able to work remotely 50% of the time and that wasn't happening). After that I took a job with Lockheed to work in a development program for the FAA. That worked out well as after a few months I was able to work remotely. It lasted until January of 2019 when the FAA had no funds because of the partial gov't shutdown caused by the battle over the budget at the end of 2018. During the period of the last job we went to MD Anderson once or twice. In April of 2019 I took a 7 1/2 month contract job with Boeing in St. Charles, MO. That turned out to be a good job for us as we were able to be together in a nice apartment in St Charles and I was able to do much of the work remotely. That job ended in November of 2019.

 

In 2020 we had the covid pandemic and in Cedar Rapids we had a derecho. I was not employed for the year. The last week of February and first week of March we were in Houston at MD Anderson for treatments. Judy had many areas of cancer on her body. She had 23 fields treated that visit. Six weeks later we were back at MD Anderson for an additional treatment. Judy had wanted an area under her nose treated and it appeared that it had been missed. So we went back for another treatment. Six weeks after that treatment cancer developed on her nose and encompassed her entire nose. A treatment with Doxil eliminated it but left a small tumor on the left side of her nose. At the next visit to the lymphoma clinic in Iowa City the physicians thought it might be basal cell carcinoma and wanted to take a biopsy. Judy let them and it turned out to be just mycosis fungoides. However, in disturbing this very small tumor they caused it to spread and soon the cancer was all over her nose again. There were three more attempts to eliminate it with Doxil but it had become ineffective at that point. Then in January of this year things changed.

 

I have always prayed for guidance from God and have always asked him to provide direction. And He has. And I continue to pray for His wisdom and guidance. After my job at Raytheon ended in June of 2015 I had time to get my mother's house in Arlington, TX, cleaned up and sold. one day in June of 2015 I was driving to Arlington and I had a vision. While driving through Oklahoma it seemed like a curtain was pulled back and I could suddenly see clearly how I had hurt my wife and children by not being around much and by not being the husband and father that God calls us to be. I cried over this and I prayed and ask for God's forgiveness and asked for my wife's forgiveness and for the forgiveness of each of our children. That was a big turning point in my life. And Judy's cancer had a great deal to do with why that happened to me. We wonder why God allows certain things to happen to us and then looking back we can see how He used circumstances for good. That day I realized just how wonderful a wife He had given me and committed to God that I was going to make many changes. That day my relationship with our Heavenly Father changed as well as my relationship with my wife.

 

In January the cancer on Judy's nose progressed to tumors inside her nose. I was torn up as it could spread through the sinuses into the brain. I prayed with friends together and on the phone. One night Judy was trying to sleep but couldn't breath through her nose at all due to the tumors. We had been reading in the gospels. I would cry at times when I read how Jesus healed all the sick that came to him. If Jesus healed all that came to Him, why wouldn't God heal my wife. I lay there holding her and praying that God would open up her nose and sinuses so that she could breath. I prayed and prayed and cried out to God. I finally lay back on the bed to go to sleep. About five minutes later I noticed she was breathing through her nose. I thanked God for answered prayer. The following night and the next she was not able to breath through her nose and again I prayed for her. And her nose was cleared so that she could breath. Again I thanked God for answered prayer. After that she was able to breath through her nose. I thanked God. Then in early March the cancer in her nose exploded and grew like crazy. It exploded out on her left cheek and affected her left eye. We didn't know what to do. We had no advice from Iowa City. We determined that we needed to go back to MD Anderson and I contacted Dr. Dabaja on a Friday afternoon. She responded back and said that she could be seen the following Monday. When I asked her what type of radiation treatment she would use she said that conventional photon radiation would need to be used and that it would take two weeks to treat. Both Judy and I were very concerned about using conventional radiation (x-rays in this case) to the face as a good friend had gone ahead with radiation after removal of a tumor in his brain and dementia had set in and other neurological issues. So we canceled the appointment at MD Anderson and set up an appointment to discuss chemo in Iowa City. Judy started a monoclonal antibody in March. We also had an appointment set up to discuss radiation with a radiation oncologist that I knew from a prior meeting with him to discuss treatment of this cancer six years earlier. We had an appointment with him the following week before her second chemo treatment. In the meeting he said that he would use conventional radiation. He also said that he didn't think he could save her left eye and that her right eye might be damaged. He also said that she might have to have nose reconstruction surgery because the cancer might have destroyed the bone. (The tumors were large and something we certainly had never seen before, and I don't think he had ever seen anything quite like this.) He said treatment could start the following Monday. (Prior to the meeting a CT scan had been done and she had been fitted a special mask to keep her head stationary during treatment.) Needless to say we were very depressed with that news. Judy had her second chemo treatment (which was not doing any good) and then we drove home. Judy was really depressed but also looking forward to getting this growing mass of tumors off her face. I was in the depths of despair. I prayed and cried out to God to protect her and to protect her eyes and vision, and I asked many others to pray that she and her eyes were protected and that no harm would come to her with this treatment. I prayed continually while being so depressed that she might lose her left eye and that other damage might be done. Saturday morning I read several chapters in one of the four gospels and held her and cried out to God and prayed for her safety and protection. I prayed for some time, I don't recall how long, and suddenly a peace came over me that I knew was from God. I knew she was going to be protected. I told her that everything was going to be ok. Monday we met with Dr. Smith, the radiation oncologist, and he told us that he had reviewed the CT scan that had been done the prior Wednesday and found that the cancer was only skin deep - a characteristic of mycosis fungoides unless it becomes systemic. Since it was only skin deep the lightest does of radiation could be used and he was very confident that her nose would not need reconstruction and more importantly that her eyes would not be damaged; he said that she might develop cataracts later but no damage to eyes. I immediately said "Thank you God".

 

Judy had four treatments that week and on Thursday Dr. Smith told her that there would be not treatment on Friday because the cancer had responded so well that they needed to replan the treatment. So the following week she had treatments every day. Friday afternoon at about 4:30 we met with Dr. Smith after her treatment. Judy told him about the pain in her left eye. He said that she needed to see an ophthalmologist immediately and called the eye center and scheduled a meeting. We went over to the eye center and she was examined by a resident first. He commented about cornea damage to her left eye. The ophthalmologist came in and did a quick exam and said he needed to call in the cornea specialists. Two cornea specialists came in and examined her and we were told if she didn't have immediate surgery to put a patch over the small area of her cornea where the thickness was only 10 microns she would probably lose her eye. So she had emergency surgery Friday night at about 9pm to put several layers of amniotic membrane over the very thin area of the cornea. And because of the eye surgery one of the specialists called Dr. Smith and said he needed to give her a week of from radiation. So she had a week off. We met with Dr. Smith during that week of no radiation treatments and he suggested using electron radiation to her nose so he could protect her eyes with shields. We agreed and she had three treatments the following week. Prior to his leaving the consultation room I told him that I had been praying for God to protect Judy's vision and that his response to her left eye condition and the fact that she could be seen immediately and have the surgery to protect her eye were all answers to that prayer.

 

After the third treatment with electron radiation we met with Dr. Smith again. I thought that after three treatments we needed to stop the treatments and let the cancer die off as it takes up to six weeks after treatment before all the affected cancer cells have died when electron radiation is used; he agreed. And over the next four to six weeks all of the cancer in and on her nose and on her face died off.

 

The cancer on her nose/face had responded to treatment well but now the concern was her left eye. Her left eye lid had been sewn shut do protect the eye. That appears to be going well currently. Her vision is pretty good with that eye and she has a bandage contact on it to protect the area of healing on the cornea. There is the possibility that she will need to use a special contact that will cost $2,500.00 and that will not be covered by any insurance, and certainly not by medicare.

 

The last six months we have walked through the darkest valley that we have ever been through together. We thought we were through the valley and that things were going well finally, but that changed last week. Judy was complaining of some pain in her abdomen, so we went into a St Lukes urgent care center in Marion on Friday, July 2, and found out that she had hypercalcemia. We were sent to ER where they checked her and then at 1:30 am Saturday she was checked into a room at St. Lukes. While she was there the physicians felt a mass in her abdomen and had a CT scan done on her abdomen. That scan revealed several masses on her lungs, liver, pancreas and a large one on her stomach. (I certainly don't know this but I think these masses could be related to the conventional radiation treatments that she had earlier.) They ran a saline drip constantly while she was there to flush out the calcium and gave her some other drugs. They got her calcium down to just above the high normal but it stalled. Hypercalcemia can be caused by cancer so they suspect the masses are malignant. She was discharged Tuesday morning. Yesterday most of the symptoms of hypercalcemia were gone but her blood will need to be monitored frequently.

 

We are scheduled to have a zoom call with a dermatologist / oncologist at MD Anderson next week to discuss treatment options and possible testing that we could have done here. This meeting is to get information. Depending on the treatment we might be able to get it in Iowa City. Since chemo and radiation have failed in the past and only provide a palliative treatment I am looking for clinics that provide integrated conventional and alternative solutions or to find a clinic that provides alternative solutions that will enhance the effects of chemo. I have found a few of those clinics, and she can get some care here in town that would augment conventional treatments. Judy really does not want to do more chemo or radiation so at this point treatment may be a combination of very powerful natural treatments designed for stage IV cancer. We don't know what we are going to do but it is certain that it won't be cheap. I have put $10,000 as a goal, but I know it will need to be $25,000 or $30,000, possibly more. I do not have those resources at this time and that is why I am setting up this fund me account. I love my wife and I don't want to lose her. We will appreciate any contributions and if necessary when I can sell an asset in another state I can pay back any funds that might be considered loans. I just want to save my wife and at this point I do not have the financial resources available. I and many others are praying for healing. God could heal her in an instant if He would. I am praying that God will allow her to be healed and restored to perfect health, and for guidance on how to do this. I have been studying cancer and cancer treatments for seven years and have learned a great deal regarding the cancer, and both conventional and alternative treatments and their successes. Dr. Julie Vose in Omaha, NE, and I have had several conversations in the past. She is an oncologist and a hematologist. She told me that it is extremely difficult for her to put this cancer into remission using the treatments that she provides (which would be chemo). So at this point we need to have a multifaceted treatment plan so that my wife has a fighting chance; that will not be just chemo and radiation. I am in the process of trying to figure this out; the trip to MD Anderson next week will provide us with what they perceive as options for treatment, and we will go from there. Contributions will be greatly appreciated, and if you want to consider it a loan I will repay when I can; as I said, I just want to give my wife the best possible chance make it through this. We know that God answers prayer and we have experienced answers to our prayers. I know that God could heal her in an instant as Jesus did. I also know that he can allow healing to take place. As I said earlier, I pray for guidance for me and for any professionals searching for the best treatment plan for her cancer. Please pray for us both. Thank you for your prayers and if you can contribute, your contributions will be greatly appreciated.