Never Give Up.

These past two weeks have been incredibly challenging. Unfortunately, last Tuesday we learned that the drug that I had taken since February, Lorlatinib, was no longer working and I had progression of disease…

This time to both lungs.

Despite the fact that we always knew that this could happen (and with lung cancer, there was a very high probability), I was just so close to that miracle. My NED status was taken away from me much sooner than I had hoped. This time when I was presented the news, after having fought and advocated for lung cancer over the past 19 months, I had a much greater understanding and knowledge of the disease. Living with lung cancer will now be my new “normal”. I will live treatment to treatment praying that research and funding continues to grow to provide more treatment options. 

Despite everything that has happened since April 21st, 2015… I absolutely love my life. I consider myself to be one of the luckiest people in the world because I am surrounded by the most amazing people. Without them, I would never be able to have the outlook on life that I do. Each and every day is a gift and I will continue to fight for more days, months and years with my family. I was able to witness another of Jack’s 1st’s a couple week’s ago as he took his first steps! I was so terrified on the day he was born that it was a milestone that I would miss – thankfully because of science and research – I am defying the odds and witnessing miracles every day.

When we returned home from the hospital that night after receiving the news, I decided that Jack would have “Christmas in November” because life’s too short for super amazing Little Tike’s Kitchens to sit in boxes waiting for a holiday. Jack’s reaction to his new gift, that was meant to be for Christmas, was nothing short of perfection. You can’t tell me I’m not the luckiest human on earth to be his Mom.

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Now here is where I ask for YOUR HELP: WE NEED MORE RESEARCH! Lung Cancer is the most underfunded disease but yet is the deadliest cancer! With a 5-year survival rate of only 17%, it is time for those statistics to change! When I was first diagnosed, I sent my tissue away to Foundation Medicine for comprehensive genomic testing. I then won the cancer lottery by testing positive for the ROS1 mutation. Unfortunately only 1% of lung cancer patients test positive for ROS1 which means that research is limited. The ROS1 community is an incredibly close “online family” of people. Mothers, fathers, daughters and sons from all across the globe. Almost all of us are living with Stage IV Lung Cancer which means that when one treatment fails, we are desperately seeking clinical trials or new treatments that may come available. Unfortunately, they are not coming out fast enough so I ask you to:

PLEASE HELP ME SUPPORT ROS-1 RESEARCH BY DONATING TO 

MY ROS1 FUNDRAISER!

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                                                                        DONATE HERE

This is a patient-driven, patient-focused ROS1 positive cancer research effort and several ROS1ers have come together to fundraise for this project. The Addario Lung Cancer Foundation has set up a restricted account just for this project. All money raised by the ROS1ers’ efforts will be added to this account and used to fund research efforts specifically on ROS1-positive cancers. (Thank you Bonnie Addario for all that you do!)

Lastly, I shared the following video at An Evening of Hope Ottawa and with Pfizer Canada Inc. this week as a way to say thank you. I was inspired by a friend’s video. Living with lung cancer has its’ fair share of ups and downs but thanks to research, my life certainly has far more ups than downs since my diagnosis. Thank you for your support and for helping to give countless people living with lung cancer the one thing that we all want and need… Hope.
 
You can support ROS1 Specific Research here to help give all of the beautiful people that you see in this video just that.

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I will always have Hope. Lots of it. Hope for new research, treatments and for more time. More time to witness Jack’s “1st’s”.

It truly is my dream that as research and funding continue to grow, lung cancer will be, if not curable, a chronic disease.

Thank you for your endless support, love and prayers.

Just breathe.

Lizzie
P.S. My blog was nominated as one of Healthline’s Best Health Blogs. You can vote daily (until Dec 12th) by searching “Lizzie’s Lungs” HERE.

Top prize is $1000 – which I would donate to Lung Cancer Research!  

 

 

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18 thoughts on “Never Give Up.

  1. So sorry to hear your news … Cancer sucks! You spoke so well at the event last night. Thank you for your inspiration, and your advocacy efforts! Hope Unites! Hoping and praying for you to celebrate many more joyous milestones! Love, Jill

    Liked by 1 person

  2. So sorry to hear this Lizzie, but you’re a fighter and your attitude is what lung cancer patients need! I became stage 4 in May of 2015 and I have the Kras mutation and there is no targeted therapy for that one but they are working on that at Mass.General Hospital in Boston.I was started last year on 4 treatments of Carboplatin and Alimta and then put on Alimta every 3 weeks as maintenance and have been NED for 9 months and I get scanned on Dec1 and if that is clear that will make it 12 months…I have been doing extremely well on this drug. I am a lot older than you(68) and my eldest daughter (45) had her top left lobe removed in Sept.,she has the EFGR mutation and I lost both my younger siblings to lung cancer…You are so right about the need for much more funds needed for research….so keep on enjoying each day and fighting and advocating ….you and Dax and Jack will be in my prayers…🙏🍀😊

    Liked by 1 person

  3. Elizabeth, this is not news that any of us wanted to hear but you already know that although we’d all prefer to live life without lung cancer, it is indeed possible to live life with it and you will continue to do so. You are a beautiful person with a beautiful family and so much spirit, heart and spunk. We’ll all keep advocating for that research but you’ve got this. xo

    Linnea

    Liked by 1 person

  4. Elizabeth, I am so sorry to hear about your set back. I’m calling it a set back because I know with your hope, courage, strength and support you will make it to NED again.
    You are in my thoughts and prayers. Best wishes always.
    🙂

    Liked by 1 person

  5. Elizabeth I am not good with words. I had a few I certainly can’t post! You are awesome! I sent your email on to all the Viscount gang. We also sent a bit of money. I will pray and keep your HOPE!!!! HUGS! Marg

    Liked by 1 person

  6. Elizabeth you are so inspiring and truly are an incredible force as an advocate for all of us with lung cancer. I look at you and see my daughter at the age of 27 could be stricken by this. Anyone that breathes. May God continue to bless you with your ‘firsts’ with your son as well as a new treatment that gets you back to NED status and feeling fabulous!!

    Liked by 1 person

  7. Elizabeth – As difficult as it must have been to write this post, your words and personal conviction of hope are truly inspiring. Your message is not just for yourself and your loving family, but for all patients and families living with lung cancer that seek more options to continue fighting… Thinking of you as you continue your journey by leading the fight, advocating for others, and asking for help!

    Liked by 1 person

  8. We all have the right ‘words’ when the news is good. Not so many when it is not. You have championed the Never Give Up mantra with gusto, and we pray that you will be able to maintain the same brave, herculean spirit which has made us all so proud throughout these many months. Praying for you…..

    Liked by 1 person

  9. Lizzie, I work in the clinical lab at foundation medicine and I wanted to thank you for sharing your story with us, I’m sorry you were unable to be there in person, but know that we are all rooting for you.
    Keep Fighting! We will continue to work our butts off each and every day for you and for all the others and continue to do our best to help as many people as possible!
    PS. Your son is adorable, you are a wonderful role model, mother and warrior. Wishing you all the best.

    Liked by 1 person

  10. The wife and I really love this blog and appreciate the creativity and inspiration you provide. We would like to encourage you to keep writing and never abandon this blog. I appreciate the hard work you have put into this blog and wish you all future success in business and in life.

    Thank you for your time, it is the most precious thing we all possess.
    -Jacque’

    Liked by 1 person

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