Powerful Patient

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

Please help us find a way for Ferhat to live.

Brain surgery needed, organized by Joyce Graff 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 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.

Then and Now - VHL Alliance in 1994 and 2021 | Powerful Patient Members of the 1994 Board of Directors of the VHL Alliance meet with Chandra Clark, current Executive Director, and Heidi Leone, Director of Advancement.

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/