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12/05/2022

Delightful conversation with Ina Pinkney, the Breakfast Queen, about Post Polio Syndrome.

10/28/2021

Please help with expenses for Ferhat and his family...https://www.paypal.com/donate?hosted_button_id=9YTDHRC9BNJP8

The story continues...

Monday night the 18th Asma and I spent making maps and hints and videos to help Merouane navigate from Terminal 5 (where JetBlue would land), through luggage claim, onto the AirTrain, and over to Terminal 1 to meet me there. This is a young man who had never traveled outside Algeria until this trip to the U.S. For anyone, JFK is not easy; for Merouane this was a Baptism by Fire. I was glad I would be with him.

We all got up at 3:30 am and took a taxi together to the airport, dropping me off at Delta, while Asma went with Merouane to JetBlue to check him in with all his luggage. We were pretty sure that one of his suitcases was overweight, but we would pay the surcharge and make it work.

I got to New York, Terminal 2, and went over to Terminal 1 to wait for Merouane near the Turkish Air desks. We were all three in close communication via WhatsApp – Asma, Merouane, and me. We had a three-way conversation going in French. I explained carefully where I was. Merouane was still in the baggage claim in Terminal 5. Does he have his luggage? Yes, but he can’t find the AirTrain. I agreed to come to him.

I rode the AirTrain to Terminal 5. From the Terminal 1 to the train you simply cross over the highway and board the train. From the train to Terminal 5, however, is about a half-mile walk. By the time I got to Terminal 5 I was exhausted, and realized I would need to go back to the train with Merouane, so I asked for a wheelchair and waited for him by Baggage Claim 5. Through WhatsApp we managed to find each other. He still had two very large suitcases – his own luggage, his father’s belongings, and now presents for the children at home. With help from the wheelchair assistant we got a luggage cart which Merouane could push on the train, making it all much easier for both of us.

Back in Terminal 1 we went to Turkish Air to check his documents. His COVID test was not going to be sufficient for Algeria. Now instead of having to have a negative COVID test no more than the normal 72-hour distance from landing, Algeria was now requiring a negative COVID test no more than 36 hours prior to landing in Algeria. It was Tuesday now. He would land in Algiers Wednesday at 3:20. Subtract 36 hours, and the test needed to be performed right now. The tests we had done on Friday and Monday did not count – it was now or not at all.

Fortunately they do testing in the JFK airport Terminal 1 to fill this need, and the results are ready in an hour. It was 10:30 by now, so we were good. It was not cheap, but we had no choice. We paid for the test, he got swabbed, and we went to lunch to wait for the hour. During that time we got word from Louis that Ferhat was officially on the plane to Algeria, to arrive Thursday at 11 am. Good! That actually worked better now with Merouane’s revised schedule. He would be home one day before his father’s body.

Negative COVID test now in hand, we queued up for the check-in desk. We watched as a young woman with a suitcase bigger than Merouane’s biggest suitcase tried to check in. Clearly her bag was overweight. They made her re-pack right there, moving her books to her carry-on. So now we knew – it was not enough to be willing to pay for excess luggage, we would have to repack. I left Merouane in line and went to a nearby Hudson News shop and bought a medium size duffel bag. When I came back to him, I asked him to take the suitcase off to the side and move clothing or other things that would not break into the duffel to get that big suitcase down to the authorized weight. As he did that our turn came up, but I let others go ahead until he finished repacking.

Now at last it was our turn. We presented his documents, checked him in, paid for the third bag, authorized my credit card for his ticket, and finally it was done. He was off to Instanbul, bags checked through to Algiers. We said our fond good-byes and I sent him off through Security. With all the complications, it was good that I was with him to get each one resolved in turn.
I sat for a while in Terminal 1 to “decompress” from the intensity of the last few days. Then I went to Terminal 4 to board my return flight to Boston.

From this point forward things went smoothly. Merouane arrived on Wednesday as planned; Ferhat arrived Thursday as planned. Abdo drove the casket to Bordj where hundreds of people were visiting the family, bringing food, cleaning the house, comforting the widow. He was buried on Thursday in the local cemetery, next to their daughter who died at age 9, surrounded by his family and friends, in the community he loved.

Since then it has been a time of grieving and healing for everyone. It is never a good time to lose your husband and father. But the family is united in knowing that he chose to go now rather than to go through a surgery that would have left him with essentially no remaining quality of life. Life on a breathing tube and a feeding tube, likely with mental confusion, in a hospital setting in a foreign country – he chose not to go there, and his family honored his wish. When we originally agreed to bring him it was our clear hope, endorsed by the surgeons we consulted, that we could remove the tumor and leave him with a reasonable quality of life – not perfect, but acceptable. We simply ran out of time.

In October 2020 he needed surgery at that time. We were unable to find a surgeon in Algeria who could do it with a reasonable expectation of success. The European backup alternatives were closed to us due to COVID.

In April 2021 we agreed to bring him to the U.S. for treatment. We knew then that Time was not our friend. Four months to get the visas, four days of anxiety and a grueling trip via Qatar brought him here in a very critical state in September. In spite of everything, with all the best intentions and expertise that we were able to bring to bear for him, we simply ran out of time.

We laid him to rest with love and respect. We wish him and all his family peace.

Please help with expenses for Ferhat and his family...https://www.paypal.com/donate?hosted_button_id=9YTDHRC9BNJP8

Update 10-22-2021Ferhat was buried yesterday in Algeria.  Here is a picture of him in 2017, at a family gathering.That s...
10/28/2021

Update 10-22-2021

Ferhat was buried yesterday in Algeria. Here is a picture of him in 2017, at a family gathering.

That seems such a simple, peaceful concept. You have no idea how much we have struggled to make that happen. Air travel in these times is more than difficult, nearly impossible.

Louis Kfoury of Kfoury-Keefe Funeral Home in West Roxbury serves the Lebanese community in that town, and has often shipped a body home to Beirut for burial. We were referred to him by a friend. He was kind and gentle and knew how to go about getting the diplomatic clearance and to deal with Air France to ship the body home to Algeria.

The normal funeral services went very smoothly, with the embalming, the ritual washing of the body, and a lovely prayer service at the Yusuf mosque. Louis got the death certificates from Boston, submitted them to the Algerian Consulate in New York, obtained the appropriate clearances and authorizations for shipment, and went to the airport on Monday the 18th to put him on board the plane to Paris, with connection the following day to Algiers. But Boston had to wait for final clearance from New York, who needed paperwork from Paris, who needed paperwork from Algiers that did not happen that Monday. Louis spent the entire day at the airport in Boston, waiting for the paperwork. By 2 pm Boston (7 pm Algiers) it was clear that the paperwork was not happening on Monday. The clerk whose signature was required had gone home for the day early, as Tuesday was to be a holiday in Algeria.

We panicked. If he didn’t leave Monday he would not arrive Wednesday. If we could not get the signature until Wednesday he would not arrive in Algiers until Friday, which is also a religious holiday in Algeria, and that would further complicate matters. Not to mention that all this was very stressful for his family in Algeria. Ferhat’s daughter Sarah in Algiers and her husband Abdo, who works for Air Algeria, worked hard to find the home telephone number of the missing clerk, called him at home, and asked him please to complete this action Monday night, which he did.

On Tuesday morning Louis went back to the Boston airport. The paperwork came through to New York at 9 AM, and the shipment was begun. He would arrive in Algiers on Thursday at 11.

Meanwhile Asma and I spent hours and more than 30 phone calls trying to reach Air France to confirm Merouane’s flight out on Saturday the 16th, to get home to Algiers on Sunday and make final arrangements for the burial in their home town of Bordj, three hours east of Algiers by car. We never did get through on the phone, but went to the airport Saturday afternoon with the email confirmation and the negative results of a COVID test in hand.
Air France did not allow him to board. They insisted that we had to finalize arrangements by phone. We explained that It was impossible to reach Air France by phone. When we had last spoken with an agent on October 1 we had changed the return to October 16 and we had the email confirmation. That was not enough to suit the very rude woman at the desk. We were sent home with her final word – you have to do this by phone.

We continued trying Air France, but at the same time shopped for any other way to get him home to Algiers before his father’s body would arrive, or at least no later than Wednesday at 11 am. The biggest problem was getting a confirmed seat on a flight from Paris to Algiers. Abdo tried through his connections at the airport in Algiers. No seats from Paris, but there was a seat available from Rome. No flights to Rome. What other options? From what other cities might there be flights to Algiers?? Cairo? Dakar? London Heathrow?

There was a flight on Lufthansa, but they too would get him to Paris but not to Algiers. There was no connection on Qatar airways until the 28th of October. Asma finally found a flight Tuesday from New York JFK to Algiers on Turkish Airways, by way of Istanbul, that would get him home Wednesday at 3:20 pm.

I called Turkish air to book the ticket and asked if they could book him from Boston on one of their partner airlines so that he could check his luggage through from Boston. Not possible. He would have to get to JFK on his own and check in at JFK. OK, I had points on JetBlue, so I booked him on JetBlue to JFK. Because I was paying for the ticket, they needed me to go to the airport to the Turkish Airlines desk and present my credit card and passport, to assure them that I was doing this intentionally and that he was not using a stolen credit card. OK, I had had to do that before for others, so I got the hours of the Turkish Airlines desk in Boston and agreed to do it.

We realized that his COVID test from Friday would not be within the 72-hour window, so another COVID test was needed. Getting a COVID testing appointment on the same day or even the next day, was proving difficult. Friday we had to drive an hour to Melrose. Monday we had to drive a half-hour to Dedham. My friend Nina was kind enough to chauffeur us all over the countryside to obtain a COVID test that would satisfy the airline.

There was now a lull in activities. We had his flights arranged for Tuesday, and the shipping issues were not yet on the scene, so we chose to relax a bit and enjoy the weekend together. We went shopping with my friend Susan for gifts to take home to the three small children, and some nice sweaters for their mother and sister. Various of my friends had brought food all week and were a kind and supportive presence for us all.

On Sunday my son’s puppy stole his iPhone. By the time we got it back she had chewed one corner of the screen and it was not working. He is blind and his iPhone is his connection to the world. I went to buy him a new phone and spent four hours on the phone with tech support that evening getting it set up, finishing up at 10 pm. Too late for the desk at Turkish Air. I knew I had only one more day to get to Turkish Air, but I would go on Monday evening.

Monday after the COVID testing I went to the airport and went toward the desks for Turkish Air, but they were not yet working. I asked when they would arrive, and was told there was no flight that night on Turkish, so they would not be there until Tuesday night. Disaster. If I didn’t get this information to them before flight time, they would not let Merouane on the plane in New York. I phoned Turkish Air to see what alternatives there might be. There were none. I had to show up in New York, or he could not board.

I immediately went online while sitting in the airport to shop for a flight to New York. I was not able to book the same JetBlue flight with him, but there was a seat on the Delta shuttle that would get me there about the same time as him. I booked a quick round trip to New York – leaving at 6 AM and returning from New York at 3, two hours after his flight time to Istanbul.

continued...

10/28/2021

Update 10-13

Ferhat died Sunday night. He was not in pain, he simply stopped breathing. He had struggled long and hard to live with all the challenges life had thrown in his path. And now he is at rest.

In April he decided to come to the U.S. for one last try to see if this very large tumor could be removed. The surgeon thought it was slow-growing and that we would have time to get the visa and bring him over. But the visa took months longer than anticipated, and the slow-growing tumor continued its inexorable growth, and we simply ran out of time.

In the end he was glad he had tried, glad to be with his daughter and son, glad to be surrounded with the love of his wife and all his children, some in Boston and some in Algeria. The potential risks of the surgery were now simply too great -- the deficits predicted were too great to offer him any reasonable quality of life.

And now his spirit is free -- he can see again, and is free of pain and of the body that was no longer serving him well. His family and friends will miss him very much. They treasure their happy memories of him, and they rejoice in his new-found freedom.

There is a prayer service at a nearby mosque tomorrow, and there will be a burial service in Algeria when he returns there later this month.

Thank you again for helping him try.

Update 10/3 -- He is not doing well.  He needs to be on a plane Tuesday.
10/03/2021

Update 10/3 -- He is not doing well. He needs to be on a plane Tuesday.

A rare brain tumor is threatening his life. Can we find help in time? Can you help?

Please help us find a way for Ferhat to live.
09/30/2021

Please help us find a way for Ferhat to live.

Want to join me in making a difference? I'm raising money to help The Powerful Patient Inc, bring th… Joyce Graff needs your support for Brain surgery needed

It was wonderful to meet with long-time friends and pioneers of the VHL Alliance as well as the newer faces of the VHL A...
09/23/2021

It was wonderful to meet with long-time friends and pioneers of the VHL Alliance as well as the newer faces of the VHL Alliance who are continuing the work and moving the organization forward. We hope other patient support groups will do as well in banding together to understand and improve their condition.

Members of the 1994 Board of Directors of the VHL Alliance meet with Chandra Clark, current Executive Director, and Heidi Leone, Director of Advancement.

Your help is still needed! Our patient arrives September 13 for brain surgery in early October.  We have raised the mone...
09/04/2021

Your help is still needed! Our patient arrives September 13 for brain surgery in early October. We have raised the money to cover airfare for him and his son, and volunteers have agreed to house them during their quarantine period in Boston. They will fly to Bethesda October 4 to check in to the hospital. Your help is still needed!

Want to join me in making a difference? I'm raising money to help The Powerful Patient Inc, bring th… Joyce Graff needs your support for Brain surgery needed

After four months of hard work, we have finally received approval for the visas to bring Asma's father to the United Sta...
08/23/2021

After four months of hard work, we have finally received approval for the visas to bring Asma's father to the United States for brain surgery! Many thanks to the offices of Senator Ed Markey in facilitating communications with the Embassy. They coached us through many painful steps, and finally called the Embassy directly to get through the logjam.

We were able to get the surgery funded through a research protocol at the NIH. We would appreciate any assistance with travel and housing expenses. He arrives in mid-September, quarantines for a few weeks, and then is scheduled to enter the hospital in early October.

I will appreciate you sharing this appeal with your friends. Every bit helps!

https://gofund.me/2b9762bd

Thank you so much,
Joyce

Want to join me in making a difference? I'm raising money to help The Powerful Patient Inc, bring th… Joyce Graff needs your support for Brain surgery needed

Please celebrate with me this major milestone in the treatment of VHL.
08/13/2021

Please celebrate with me this major milestone in the treatment of VHL.

FDA approves belzutifan for cancers associated with von Hippel-Lindau disease Oncology News Burst

Check out our interview with the International Kidney Cancer Coalition's (IKCC) newly appointed Executive Director, Mart...
05/24/2021

Check out our interview with the International Kidney Cancer Coalition's (IKCC) newly appointed Executive Director, Marta Szulc. She discusses the importance of strengthening connections between organizations within the kidney cancer community. She also shares her thoughts on prescriptive versus participatory medicine and the importance of developing materials to help patients navigate their diagnosis. This is especially true with respect to clinical trials and doctors recognizing the importance of treating patients as partners in the decision making process.

https://powerfulpatient.org/international-kidney-cancer-coalition-ikcc/

This is not only about the environment, it is also about your health.
05/23/2021

This is not only about the environment, it is also about your health.

Are you concerned about the disastrous effects of plastics on our environment? Join Brookline Mothers Out Front for a powerful presentation that will open your eyes and move you to action. Moving Beyond Plastics: The Climate Change, Environmental Justice, and Water Quality Issue of Our Time. “Beyo...

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