Inside scoop

This is awesome! The Ottawa Senators care so much about people affected by lung cancer that they set aside time to sign a stack of The White Ribbon Project ribbons to give to people newly diagnosed with lung cancer at The Ottawa Hospital Cancer Centre. The Weir family is a major reason that The Ottawa Senators are part of The White Ribbon Project community.

Bill & Lisa Weir have made 400 The White Ribbon Project ribbons and given 370 of them out. They are very generous people who are giving with love, investing their time, talents and resources into people affected by lung cancer. They care. Their family is tremendously supportive. They have three grown children, twin grandsons and one due in July. Lisa is looking forward to turning 60 this year. Big milestones. In May 2020, Lisa was diagnosed with advanced lung cancer. Stage four. Both lungs. She started a clinical trial for her specific kind of lung cancer (KRAS G12C) in May 2021, and it’s working well. #ResearchMatters When she and Bill learned about The White Ribbon Project, they wanted to be part of it and reached out in the very early days to ask about making ribbons. By the end of February 2021 they had made 244 ribbons. Their daughter and son-in-law, Sam and Josh (who plays for the Senators), eagerly jumped on board as did many other family members, friends, teammates and more. What a difference their family and community is making for others. “In this family no one fights alone.” It’s so good to know the Weir family. They are kind people, good, generous and eager advocates, silver linings of lung cancer. Thank you, Weir family and extended community.

Dr. Paul Wheatley-Price is another important The White Ribbon Project community member. He is a medical oncologist who has stepped into an even bigger leadership role at The Ottawa Hospital Cancer Centre, giving out ribbons with love. He knows the story of The White Ribbon Project and the importance of love in the making and giving of ribbons. He understands the power of the Ribbon to gather, unite and uplift the lung cancer community in love. He came over to our home today to pick this new batch up. (Thank you to first born for taking pictures.) He was at the Ottawa Community Ribbon Build back in August 2021, and gave out a stack of ribbons to the newly diagnosed in the Fall and Winter. He has been showing he cares about people affected by lung cancer for years. He has played a key role in advocacy, and is a terrific partner in advocacy. He helped us get the first lung cancer outreach table on World Lung Cancer Day, August 1, 2018 at the Cancer Centre (and has continued to support them), and he helped Andrea and me with the annual patient-driven lung cancer patient summits that we held prior to COVID. Having someone like Paul be part of the team makes a phenomenal difference. Multi-disciplinary advocacy teams are powerful game-changers. Paul is a real door-opener. We are so glad he has taken on this important role with The White Ribbon Project, giving out ribbons with love in Ottawa.

Below are some pictures showing just a small portion of Paul’s tremendous advocacy (over years) for people affected by lung cancer. He is a powerful force.

Paul was part of Ottawa’s community ribbon build in August 2021.

Here is Paul today, picking up ribbons at our home. Thank you, Paul, for consistently going the extra mile.

The Weekend, The Sens, and Guy Lafleur

People are asking for updates, so it’s good to let you know that though there have been a rough few days, the weekend was a little bit better. It’s hard to believe it’s already Wednesday evening. A busy few days taking care of some important items on the to do list.

Another important health update: our awesome friend and neighbour, Chris, drove us to the Cancer Centre for blood work on Monday. Blood has been successfully drawn and sent off to be tested for some potential new circulating tumour DNA which might lead to a potential precision oncology treatment option. Now we wait. With hope.

Back to the week-end update!

The kids and I have had some very good conversations, and we spent time singing together on Saturday, with the middle child on the guitar. For years, a vocal chord has been paralyzed so it’s been challenging to speak, sing, etc. Lately it’s been gradually improving, and the past few days it’s noticeably better. Very thankful! Singing is nothing like it was before cancer, but it’s very good to have recently gotten back almost an octave and a half. So thankful.

Our wonderful church family brought three meals on Thursday, as they have been doing every chemo cycle for quite some time. For a long time before then, dear friends had been bringing food. We had asked for only one meal each three weeks, but suddenly realized that one meal wasn’t quite enough. That realization coincided with a call from one of the pastors asking if the church team could bring food for us. It made good sense (since our need had increased) to give our friends a break and switch to a bigger team. We are very grateful for the abundant generosity of our community.

Friends have been coming by with bagels, treats, additional meals, additional treats, additional bagels, additional treats, and more. We are blessed and appreciative. Thank you so much!

Here is a big treat from Sunday:

Canadian White Ribbon maker and fellow lung cancer survivor advocate, Lisa Weir came (from London Ontario) to visit us with her daughter Sam today. (Thank you to my first born for taking this picture.) The Weir family has made 400 White Ribbons – with love – as part of The White Ribbon Project. We have so much appreciation for them and others who have worked together as a good, kind, loving team to make and give out ribbons with love across Canada. Lisa has also been a great friend and strong supporter. She and Sam came with armloads of dinner for us. They are very kind and good, supportive friends. #grateful

This past year, Sam brought several armloads of ribbons from London to Ottawa to be distributed with love. She is awesome! Thank you, Sam. Sam is married to Josh Brown who plays for the Ottawa Senators. They are huge supporters of Lisa and others affected by lung cancer. Sam has also brought White Ribbons for the Sens to sign. Some have already been given (with love) to lung cancer survivors. Dr. Paul Wheatley-Price is coming by this week to pick up more to be given out to people diagnosed with lung cancer. #thankful

Ribbons made with love by the Weir family were given to Hockey Legend Guy Lafleur who is a powerful advocate for people affected by lung cancer. The Weir family had sent a bundle of ribbons to Robert and Melina in Montreal so they could give them out with love there. Seeing how Guy Lafleur (who had been diagnosed with lung cancer) was advocating for research motivated our team to get him a White Ribbon to express our appreciation for his good work. Reached out to Dr. Normand Blais at CHUM (we’ve both been part of Canadian Cancer Trials Group Lung Executive). Dr. Blais connected with M. Lafleur’s team and worked to make it happen. Robert and Melina brought White Ribbons to Dr. Blais who took them into the Cancer Centre. Here are the pictures. (Dr. Blais is on the right.)

Many of you know that Canada is a bilingual nation, with 20-25% of Canadians speaking French as their first language, including people pictured above. The White Ribbon Project is an international movement, and right from early days we discussed how important it is to make ribbon labels in local languages, and how we could best do this. The reason language matters is because language is love and The White Ribbon Project highly values love. We really wanted to make ribbon labels in French. We were not able to make it happen in time for this photo shoot above, but at the Ottawa community build in August 2021 we made the first French ribbons, many of which have been given with love. (Since then, Ribbons in other languages have also been made and given with love.) Here are some Ottawa build pictures from August.

Canadian advocacy opportunity

Dear Canadian friends,

Here is a terrific advocacy opportunity that could bring years of life to some of the people affected by lung cancer. You could send this letter to your MPP and even email it to 5 friends / family members asking them to also do the same. (Note: it’s already addressed to the federal Health Minister, Minister Duclos, so please send one to him also.) (*You can easily google who is your MPP.)

This could help open access for people affected with lung cancer to get life extending drugs like the one that has helped keep me alive since 2018, Lorbrena (also called “Lorlatinib”).

The Lung Health Foundation has made a video with two lung cancer survivor advocates (Loverne Wowk and me) and Dr. Geoffrey Liu of UHN, the top Canadian researcher for this type of lung cancer. Together we urge you to stand with us, to advocate for life for Canadians affected by ALK lung cancer.

I have lived over eight years with ALK lung cancer, because I’ve been able to take drug after drug. I’ve benefited from four different targeted therapies and a total of seven different lines of treatment. This has greatly extended my life. The quality of life on targeted therapy is so much better than chemotherapy. Last summer on Lorbrena (also called Lorlatinib), I was up on the ladder painting our whole carport. I also stained our shed, planted a new garden bed and painted some of the inside of our home. I have been able to live well on targeted therapy.

Shouldn’t every Canadian be able to get access to effective life-extending treatments?

Please seize this great advocacy opportunity today!

(and let me know when you do)

Best,

Jill