Isi and Sari Ghitis

Chapter I (published in May 2022)

This is dedicated to our angels; every name mentioned here has being an angel for us on the difficult journey of fighting for a cure, fighting for life. Thanks, angels.

It all started in 2012, when my husband Isi was 52, at a party he fell during a "musical chairs" game. A woman fell over him trying to catch the chair. From that moment on, the pain in his lower back started. My husband was very dynamic and athletic; he had a gardening company and worked physically as well. It was strange that the pain did not disappear after a few days. During the next months as the pain increased, we consulted an unlimited number of physicians from many specialties. All related the pain with the trauma. We even went to a senior orthopedist who asked for a CT; the CT came in three disks. After looking at the second disk his diagnosis was a lumbar herniation. He did not look at the third disk...and the time passed.

Our small daughter was already 5 years old; her father lived in a lot of pain and was not able to raise her in his arms. I remember as it was today, on a Friday morning we called our physician and good friend Dr. Haim Stroh, who had known Isi since childhood. Dr. Stroh said it didn't make sense that such an athletic young man would be with trauma pain for so long and asked for the simplest thing everyone else hadn't asked before – an X-ray of the back. Dr. Haim Stroh has been beside us during this journey, taking care of medical details, helping, caring, and supporting us. On those X Rays, a mass was already visible, and all started: looking for a specialist, CT, MRI, Biopsy. Thanks to my sister Jenny and her sister-in-law Michal who engaged in this project and helped, we got access to the best physician in the area Prof Kolander.

Chordoma is a very uncommon illness; in Israel (where we live), there are very few cases a year. However, already on the MRI the radiologist suspected chordoma of the sacrum. Dr. Friedman, one of the best radiologists in Israel (thanks Michal for contacting him), deciphered the MRI. Until the biopsy results another theory was explored, a myeloma (cancer in the blood). However, Dr. Erdan (a very special hematologist who sadly passed away later) ruled out Myeloma. A blood condition called MGUS was discovered, which we have followed up on since then every year with the Hematologist. But that did not explain the tumor. Later, the biopsy report confirmed the diagnosis: advanced chordoma of the cacrum. Then the race began, exploring, looking for expertise, learning, and reaching for help all over the world.

Our main physician Prof. Kolander suggested surgery combined with radiation, the surgery that could have left Isi with serious handicaps and even lost the ability to walk. I became a "lion" and sent letters, and emails to all the experts in the world: including Prof. Varga in Hungary, Dr Fridlander and Rav Firer in Israel, and many others. It was common opinion to perform en bloc resection of the tumor, a complicated surgery with lots of risks and many functional handicaps. On December 31, 2013, after a second opinion consultation with an expert in Tel Hashomer Hospital, my husband said he would not perform the surgery, he preferred to die and not be half a man. He smoked in the car with the windows closed; I was not able even to say a word. Two hours later my sister Jenny called me and said, "You have to meet Prof. Boriani from Italy, he is an expert and is performing surgery in Israel, go find him". With very little information I tried to get Prof. Boriani's phone number and called all the Boriani's I couldfind on the Web until finally I reached his wife in Italy. It was not easy to convince her, but finally, she gave me his number. I called Prof. Boriani; he said he would not have time to meet me as he was leaving for the airport in a few hours. I begged him to wait. Prof. Boriani waited for me, and the miracle started. I drove as if I were crazy to his hotel, and as I am very organized, I had all the images and exam results on my laptop. Prof Boriani carefully reviewed the images and though he is a surgeon, he said, "If it was me, I would do a Carbon-Ion therapy that can stop the growth and shrink the tumor". He explained the therapy was relatively new and only available in a few places in the world, the most experienced center in Japan. Prof Boriani said better in Germany in HIT (Heidelberg) as it will be more accessible for us, he gave me the details and he flew home.

It was the evening of December 31, 2013. And the race started, trying to reach the Carbon-Ion centers, sending the information they requested, mailing images, getting acceptance for the therapy, getting approvals from our physicians in Israel, and of course – from the insurance. With Germany, we needed to wait with lots of patience as they were on New Year's break, and after they returned it was very difficult to reach them. I even asked my very good friend Debbie who lives in Frankfurt to talk to them, she went personally to HIT and then they reacted! Japan agreed to perform the treatment but we hesitated because it was very complicated to move to Japan for almost 2 months. What could we do with our small daughter? How to communicate with people there? Finally, HIT accepted as well and the race for getting insurance coverage started. Thanks to Freddy Rosenfeld kindly mentioned by Prof. Boriani, we achieved approval from our private insurance. Freddy contacted the Rav Firer who is an authority in major illness and treatments. In between and before Rav Firer gave his acceptance, one Friday morning Freddy called to me and said, "Go get a tumor tissue sample and bring it to Rav Firer right away, a Rabbi will take it to Mayo Clinic ''. We did not hesitate even a second and drove to the laboratory in Ichilov. Friday is not a working day in Israel so the laboratory was almost closed. We managed to find someone there (an angel) and explained to her what we needed and somehow she agreed and we “STOLE” a tissue sample of the tumor from the lab.

In a few hours, the tumor sample was in the Rabbi's hands on the way to the USA. Mayo Clinic confirmed the diagnosis, and Rab Firer's contacts gave their blessing for the Carbon-Ion beam treatment. Our angels Yigal and Carmit worked with Freddy to get the insurance acceptance and a very good coverage. Sadly, Maccabi our public insurance did not accept the treatment though it was Isi's best option. On second thoughts, I think we could have sued them but our mind was totally on treatment and recovery.

At the end of January 2014, Isi started Carbon-Ion in active beam application treatment in Heidelberg, as part of the ISAC trial. Dr Matthias Uhl led the treatment.We left our small daughter with my mother in Israel and moved to Heidelberg for one month and a half. The treatment consisted of 6 weeks of radiation and then an additional week to stabilize before returning home. Heidelberg is a beautiful town 30 minutes from Frankfurt. Frankfurt is surrounded by a river and mountains. As there is an important University, the city is full of young people riding on bicycles. In Heidelberg, we rented a very cozy and modern apartment from Mr. Chandler, who was always very kind to us. Every morning I brought home a fresh hot baguette from the bakery downstairs. Thanks to Debbie, Leo, Vivian, and Matthias who helped us during our stay in Heidelberg and after the treatment ended. The treatment was not easy at all, Isi suffered from intensive pains and cramps that increased with time. At least he did not lose function. After the treatment, Prof Kolander, Dr. Stroh, Prof Boriani, and Prof Debus's office in HIT, performed a close follow-up. Isi was the first Israeli patient treated with Carbon-Ion. Since his treatment, more patients have been referred to Carbon and Proton Ion centers, in that sense, we are very happy for our contribution to other health care.

During the following 7 years, there were ups and downs, each MRI brought with it lots of anxiety and stress. Though the tumor was stable, in 2017 Isi performed a control PET-CT scan, and a mass on the lung was discovered. That led to new research and consultations. Prof. Merimsky, our oncologist, was our guide in that new chapter. As nothing is common for us, it was not possible to perform a biopsy due to the localization of the mass and the only option was surgery to remove it. During the surgery, the frozen section biopsy confirmed lung cancer, but Dr Paz the surgeon decided to wait for the biopsy results. The surgery for extracting the left Lung's upper lobe continued two weeks later. Both lung Cancer (adenocarcinoma) and the chordoma are primary cancers and there is no relation between them. I must say that probably and ironically, chordoma saved Isi's life, as the mass was discovered at an initial stage during a PET-CT intended to monitor Chordoma'sprogress. Isi recovered from the two chest surgeries, which was not easy but over time, Isi became strong again.

Going back to chordoma, during the years Isi lost muscle mass and nervous functions on the left foot. Nevertheless, Isi could walk and we were convinced that the chosen treatment was the best available option. We are permanently in touch with the Chordoma Foundation, especially with Shannon who has been truly supportive. We met in the foundation incredible people like Josh, Patty, Hans (RIP), David, and many more. We joined two conferences in Europe organized by Hans, but since his death, the activity of the foundation in Europe decreased. Isi donated tissues from his tumor to the Foundation for Research and took part in the NIH program recently.

During the summer of 2021, the MRI performed showed a new mass on the right section of the sacrum. The discovery brought again fear and stress. Again, I left the anxiety apart and started researching, finding, reaching. The alternative was "do nothing and wait" or start systematic treatment with Gleevec. As always we consulted with Prof Boriani who said doing nothing is not an option, Gleevec will probably stop the growth for a while but with secondary effects, and said it's time to perform the en-bloc resection or radiation.

The idea of the surgery paralyzed me for some time; I was not able to breathe. Reading between the lines, I decided to explore the radiation option. In Germany they ruled out that option, they said second radiation would not be possible. I was not happy with that answer and somehow decided to call Freddy Rosenfeld. Again, the miracle started. Freddy immediately reached Prof. Hug who is leading MedAustron, the Beam center in Austria. Prof. Hug took action quickly and reviewed the images with Dr Fossati, his radiation oncologist. Their opinion was that a second Carbon-Ion treatment was YES viable, with the need for a spacer to protect the rectum.

The second radiation is UNCOMMON; I think Isi is the first patient in the world who received two Carbon-Ion radiations for Sacral Chordoma. Professors Boriani and Kolander were very confident with the approach, and then Freddy and Yigal helped again to get the insurance approvals. In no time, we were in Austria ready to start the treatment. As it was the COVID-19 wave, we moved to Austria with all our three children who continue working and learning remotely from Wiener Neustadt. This journey was longer as Isi needed the spacer surgery before the radiation. There was no certainty the surgery would succeed, and then without the spacer, there was a big risk of rectum perforation due to the radiation. Dr. Viragos in Wiener Neustadt performed the surgery. Dr Viragos explained the surgery risks, including the possibility of opening the abdomen to insert the spacer. Dr. Viragos succeeded in placing the spacer, and that was by laparoscopy without opening the abdomen. Thanks, God!

Dr. Viragos not only succeeded in inserting the spacer, but he also managed to separate the tumor from the colon making Isi feel more comfortable. During the 5 days of hospitalization in Wiener Neustadt and due to COVID restrictions, only half an hour per day visits were allowed. Those were difficult days though there was a big relief knowing the spacer was placed and the radiation should be safer. Then a few days after the surgery, the radiation treatment started in MedAustron. MedAustron is an incredible facility, managed by the best of healthcare professionals. They took care of and helped us with everything, including housing. They adopted us and made us feel safe. From the treatment and finding books in Spanish, to finding a swimming pool formy training, they took care of every detail. I am sure that their hospitality contributed to the positive results of the treatment.

Though the intensity of the radiation was higher than the treatment in HIT, the side effects and pain were much lower than it was in Heidelberg. Not only the technology advance in 7 years but also the professionalism and dedication of Prof. Hugh and Dr Fossati contributed to the positive treatment outcome. Dr Fossati carefully planned the treatment, explained to us all the details, and made sure to minimize the impact of the radiation on nerve roots. MedAustron is located in a small town called Wiener Neustadt, 40 km. from Vienne. We decided to stay in Wiener Neustadt to be closer to the hospital and radiation center. As it was the middle of August high season in Austria, it took a lot of work to find accommodation. For the first 2 weeks, we stayed at the Hilton in the center of the town and then moved to a house.

It was not easy for a family of five to live for 14 days in two hotel rooms, but we managed after all, to have a good time walking to the center, discovering small restaurants, and tasting Austrian cuisine. Between hospital visits and radiation, we also managed to do small trips to Vienne and the surroundings. Austria is a beautiful country, and the people are very nice. After two weeks, we moved to Manfred's house. We had space, rooms, a garden, and even a pool. Thanks, Manfred, for your hospitality and for making us feel at home. Manfred's house was our home and office for a month. We converted the living room into a home office, each of us working and learning remotely while Isi received the treatment. The treatment finished and we returned to Israel. Isi is performing an MRI every 3 months, meanwhile going well hoping for stability over time.

As the new tumor is on the right side, now the pains and cramps are on both legs. Isi's spirit never breaks; Isi swims and does physiotherapy to strengthen his body. Isi is going through a difficult path and obstacles. That good spirit is a lesson for all of us, day by day and not thinking too much. As problems come, we resolve them and move on. The future is unknown, every day we are together, and we breathe is a miracle.

I would like to mention many more angels other than the names above

• Dr. Elias Castel our dearest friend and more than that a brother, always hearing, advising,helping, and caring.
• Dr. Mike Cusnir my dear cousin and a brilliant hematologist, helping and guiding us.
  
• My sisters, all of them, and each of them is my support.
  
• My mother took care of Michelle when she was a little girl and when we were away on treatments.
• My big children Jonathan and Debbie, care for their father and support me with all these uncommon journeys.Michelle, my 13^th year old. From her early childhood surrounded by her parents busy with tests, talks, and all related to leading with a hard disease.
• My boss Eli, supporting and guiding me on the next steps.
• All our friends and family, understanding and caring so much – thanks.

Part II

Today is April 21/2024 one day before Jewish Passover, Isi died ten days ago on April 5 at 18:08.

After the second treatment in Austria, we performed regular MRI follow-ups. During the last two years, slowly and painfully Isi lost many abilities. Last summer (2023) he experienced a very strong pain, misdiagnosed as a fissure, I must say the misdiagnosis led to even more pain caused also by the doctor's examinations. Additionally, he lost the muscle mass on the left leg and needed to walk with a walking stick. That summer we planned a very nice trip to Spain, the day before he asked me to cancel as he was in big pain. Isi tried everything to recover the muscles: he tried to swim; he bought a static bicycle. But all was difficult, even swimming in our small pool. From that time Isi spent most of the time in pain on the sofa. He was not able to walk barefoot on the beach, as he did summers before. He was not able to drive or even sit in the car. And then, the MRI in June 2023 ruled out a fissure and confirmed tumor progression. I felt fear, the uncertainty, but quickly started the calls and emails to our experts. Radiation, which was backed up by Professor Boriani and our Professor Hug offered a 3rd radiation, which was backed up by Professor Boriani and our doctors in Israel.

In August 2023 we traveled to Austria to MedAustron for 6 weeks. Though Isi was in big pain, the radiation relieved it somehow and he could enjoy some good time. We went on small trips with our children and with Isi's brother and cousin. We gained some good days. But he was always in pain. A couple of months after we returned to Israel very bad things happened, the pain became stronger, and the inabilities worsened. Isi tried to perform an MRI but it was so difficult that it was done under general anesthetic.

From the moment that MRI finished (December 11, 2023) something very bad happened. Isi was not able to stand and control sphincters. I called an ambulance and took Isi to the emergency room at Ichilov Hospital in Tel Aviv, and then the hospitalization struggle started. In Ichilov they confirmed Isi had an infection and bacteria of unknown origin. This was the start of a nightmare. Antibiotics, medicines to help with the medicine's secondary effects, Many examinations, some of them truly painful and ignorant of Isi's malignancies and bad conditions. In parallel the MRI done before confirmed the tumor expanded entering the nervous canal.

That first hospitalization in Ichilov was a very bad and sad experience, as the medical and supporting team didn't treat Isi with kindness. One day, Isi was alone (without the family) on the way to the shower and the doctor said to him "CT results came back, you have metastasis", without any previous preparation or even asking me to be with him for that terrible update. Isi was released home to "home hospice" with an IV to continue antibiotic treatment. At home, he suffered a lot. The antibiotic administration on the vein was performed by my daughter (14^th year old) and my son! After 10 days at home, Isi again collapsed and then went back to the hospital.

It is difficult for me to remember the line of the events, but Isi never came back home from the hospital, he almost died from a sepsis shock and suffered from more infections and bacteria. Isi recovered from the shock I guess by a miracle, his high spirit and desire to live. But his life was miserable: he had a pathological fracture on the left humerus, catheter, diapers, was not able to walk or even sit, and if all that wasn't enough because of the resistant infections he had to be on "touch isolation". Meaning that we were not able to help him without wearing gloves, and we were not able to hug him.

During all that time his uncle Victor with his own hands built a shower for Isi on our first floor, hoping Isi would come back home again. That gave Isi lots of hope as every day he asked about the project's progress. Thanks, tio Victor. At that time, the only joy he had was listening to his daughter Debbie playing the guitar and singing for him. Isi was conscious and his mind was clear, but the only part of his body that still worked was his right hand.

And then more and more painful examinations including 4 biopsies as part of the pathological results were inconclusive. Finally, the worst of the worst: The oncologist confirmed a 3^rd primary and aggressive cancer Metastatic Sarcoma. And recommended starting chemotherapy treatment for Sarcoma. Though Isi was very weak he agreed with the treatment, Isi wanted so hard to live.

In parallel, I consulted with expert doctors in Europe who said it was very unlikely that the same person would also have chordoma and sarcoma. I sent the slides to Italy for a second opinion, but the result arrived very late – after Isi passed. On that report, Sarcoma was ruled out!

Isi started chemotherapy (for a cancer he probably didn’t have), and we moved him to a complex nursing institution. There he was for only 10 days until he crashed again and again in an ambulance to Ichilov. Isi was taken to intensive care, his aim to live took him out of immediate danger, but he was very weak. Isi asked to continue the chemotherapy and we respected his wish. Some days after that last treatment, Isi was so weak and in pain, and then delirium started, his mind was not clear anymore. The oncologist confirmed chemotherapy wasn't working and from that point, we started supportive care, we moved Isi to a hospice where he spent his last days.

Isi's hospitalization was long, very long, almost 4 months of intense torture, helplessness, and sadness. We never left him alone and together with me and my children also his brother Salo and his very good friend Bucho helped him, accompanied and supported. Our routine became being in the hospital, a little bit of work, a little bit of home. Great and lovely friends visited daily and didn’t forget us for a moment. Moving Isi to the hospice was a complex decision since there they did not make any life- saving procedures, The decision was supported by Ichilov's fantastic palliative care team (thanks Dr Michal). But after the first day there we finally felt peace, we were able to take Isi out of the room to the garden under the eucalyptus trees he loved so much. We forgot the isolation and touched and loved Isi. The hospice team took very good care of Isi, they were kind and understanding. They even took care of us, fed us, and helped with psychological support.

On Friday afternoon, the 5th of April, Isi had difficulties breathing and was supported with oxygen. My kids, his brother Salo, and I sat beside him until his last breath. That was some minutes before Shabbat. We lit the Shabbat candles and said the last kiddush beside him, however, Isi was no longer with us. Isi died as a "Kadish", a saint and pious man. The sadness and emptiness will remain forever, but Isi suffered so much that it would have been egoistic to hope he would be alive with the terrible disease.

This has been a long and painful journey. I learned from it that medicine should not be only science, as technology advances patients become numbers, images, and graphics. Doctors, you have a person in front of your computer- a whole life, frightened and trusting on you. I know you are very busy but just take a few minutes to look them in the eyes, caring is as important as drugs and treatments. During the Shiva, we discovered Isi as he was when he was young, with so many photos, memories, and songs. We remembered him singing his songs, recovering his memories. Enjoying the beautiful garden he created for us, I remember him every moment looking at our three children, his trees, and his creations.

Isi and I did everything together for more than 36 years and now is a new and different life without him. I hope this new chapter will be full of joy and quietness, celebrating Isi's life always with a smile.

On the second part of the last journey, many more angels supported us, there are just a few names on this list:

• My children Jonathan, Debbie, and Michelle
• Salo, his brother, who never left Isi alone.
  
• His good friends Bucho and Michel
  
• Our uncles Victor, Loretta, and Tzipi
  
• My sisters, I couldn't do this without them
  
• Mike his younger brother and his wife Vicky (my small sister)
  
• My good friend and the best doctor ever Elias Castel
  
• Nurit and Keren from my swimming team and my trainer Cindy supported me and made me forget for a little while the sadness.
• Our neighbors are always willing to help and caring, Thanks Ari, Regina, and Keren.
  
• Some doctors in Ichilov, the palliative team, doctor Dani, Israela the nurse, Doctor Amir Sternheim, Viki Hanes, who visited Isi every morning on her way to work, bringing him hotcoffee and a smile, the social workers, and many more.
• The professional and excellent team in Tel Hashomer's Hospice. Thanks, Libi.
  
• Our dear Professor Kollender, Dr Haim Stroh, and my counselor Freddy Rosenfeld.
  
• Doctor Sadi from the hospice team, taking time to understand Isi holistically.
  
• Doctor Silvia Stacchiotti in Italy and Doctors Hug and Fossati in Austria.
  
• Doctor Mike Cusnir, my cousin from the USA.
  
• All our dear friends and family, always bringing delicious food, calling, caring, and visiting.