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Thursday, September 03, 2020

Well, the mass they found on my son Patrick’s spine was not a dealbreaker for the clinical trial and the docs at Dana Farber think the new protocol may actually help with that issue and possibly shrink that so it doesn’t cause as much pain.
They also strongly urge him to ‘man-up and med-up’ and take the pain meds they prescribe.
He hates to because he wants to be more awake and alert and he is afraid to drive medicated and also because he will have have to rely on his wife Jean more.
And also... that huge stigma about opioids, which he has never taken.
Dear lord...he is in the final stage of his battle!
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Here is Pat with his son and dad two summers ago.



He is two weeks into the trial and suffering.
Thankfully the hospital provides discount hotel rooms nearby so he can stay up in Boston as needed (about two hours away).
We reassured Jean that we are here for them and she can accompany him whenever he and she want or need.
Her district will not allow her to teach remotely as they had too many teachers who requested it and they have prioritized the teachers who are over 60 or have their own health issues.
Jean will not go back, will use her sick days and then go on unpaid leave under the Family Medical Leave Act, which just means they will keep her job open and provide health insurance, although she will have to continue paying whatever her share is.
This is how folks go broke because of major health problems.
Plus, Pat had to leave employment in April, after 3+ years of powering through with stage IV colon cancer and will start SSDisability this month, another financial hit for their family.
They will not send the kids back to school, either, to protect Daddy, which the kids understand, but of course are disappointed about.
I am going over later to help Jean set up their ‘outdoor classroom’ on a huge sunroom they have..how fortunate that they have that after moving from a tiny house last year. It will be good until the very coldest winter months.
So my job is to help with the kids as much as possible (we will be helping with online learning as well), support Pat and Jean through this, keep cooking meals and sending them over there and keeping ourselves healthy so we can be as much help as possible.
I am not a worrier by nature but it’s getting pretty difficult not to lately.
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Member Comments About This Blog Post
  • BUTTONPOPPER1
    Elizabeth, you have so much going on right now. It must be hard, but it sounds like everyone is coping pretty well under the circumstances. I'm so glad Patrick was allowed to stay in the clinical trial and that he can stay in Boston instead of having to commute. What a blessing! And what a blessing that Jean is a teacher and with her skill set will be able to home school the children (though I was never very good at teaching my own children, ha ha). All the details about insurance and bureaucracy must be frustrating. I sure do wish it were all simpler, because it adds stress when you're already stressed from so many other things. Wishing you and yours as few bureaucratic headaches as possible.

    You and your family are in my prayers. Please take care.
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    51 days ago
  • TRENTDREAMER
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    54 days ago
  • LYNKIN
    emoticon Sending prayers for Pat and all of the family.
    56 days ago
  • GOING-STRONG
    Elizabeth, My heart just breaks for you and your family. Your grace and strength are just truly amazing. I'm thinking of you and your family and sending you blessings.

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    56 days ago
  • ALIHIKES
    I am glad that he is able to continue in the trial. And that Jean will be able to support him, with your help. He is in my prayers. It is sad that they will have to take such a financial hit, but I am glad they have insurance and a loving family.
    57 days ago
  • MARITIMER3
    I'm glad that Jean will be able to teach the children at home and be with Patrick. I am so sorry that they have to take such a financial hit in order to spend the time together.
    57 days ago
  • EDWARDS1411
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    57 days ago
  • YOUCANDOITNANA
    Sending positive energy to you and your family.
    57 days ago
  • 1CRAZYDOG
    Hugs and prayers for you and your family. Just unimaginably difficult. **SIGH**
    57 days ago
  • LKWQUILTER
    Big emoticon and emoticon for all of you.
    57 days ago
  • ALEXSGIRL1
    sending hugs and prayers to all your family
    57 days ago
  • WATERMELLEN
    Such a lot to deal with . . . we are hear to listen and to support YOU, the "supporters"!
    57 days ago
  • OVERWORKEDJANET
    You all have your good places and practices. Safe and secure is how all of you should feel. I'll be thinking all those good thoughts!
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    57 days ago
  • MTN_KITTEN
    Though Jean is not over 60 ... can they not understand she needs to teach remotely for the safety of Patrick???

    Fingers and toes crossed for allllllllll of y'all.
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    57 days ago
  • BETHGILLIGAN
    No words can make this any easier for you or the family. Please take care of yourself; those kids are exhausting no matter how much you love them! (God invented menopause for a reason! emoticon )
    I continue to pray for your family with special blessings to those little ones! I so wish I could do more!
    57 days ago
  • HIPPICHICK1
    No one likes to see their loved ones suffer. It is incredibly difficult to watch as many of us know. Whether it is an illness or a mental state, makes no difference.
    I hope Pat decided to take the pain meds. When he is in pain, he's probably not good company or in good humour. It would be beneficial for him to be in less pain, regardless of how sleepy he may get or what others think of opioids. It shouldn't be about what others think, but his own personal comfort. Being in a good mood because of a lack of pain is better for everyone around him. They will worry less if he is more comfortable.
    I know what the medical system is like in the U.S. because we have family there, and I don't wish anyone that kind of hardship. 24 hours in ICU can bankrupt most people, and in the case of Pat and Jean, with long term illness and the letting go of their employment so they can extend Pat's life as long as possible by staying safe because of his vulnerability...all one can do is hope they will all cherish this special situation as much as possible, for as long as they can.
    Sending love and hugs to you and yours.
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    57 days ago
  • PHOENIX1949
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    57 days ago
  • LORI-K
    🙏🙏❤️
    Thank you for the update. Sending prayers to Pat and your whole family.
    58 days ago
  • ONEKIDSMOM
    emoticon You have much on your plate, but are handling it with grace and courage, to support your beloved son and his family. Just because the Covid thing came to plague us with disruption, doesn't mean OTHER dire conditions took a break!

    Sending calming vibes your way to chase off those looming worries that even a non-worrier can detect!

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    58 days ago
  • SLIMMERJESSE
    oeshouse.org
    Joe’s House is not an actual house, but a nonprofit organization that helps cancer patients and their families find a place to stay when traveling away from home for medical treatment. *Due to the COVID-19 crisis many lodging facilities are closed or have limited services. We recommend calling the facility for the latest status.

    Keeping him in my prayers.
    58 days ago
  • GGRSPARK
    This may turn out to be the time you will cherish the most, and because you can help in so many ways. Many of us reading this are following your progress.
    58 days ago
  • KOFFEENUT
    You are so right about the health insurance - it IS how families go broke, in spite of doing everything in their power to do. Glad he is still able to be part of this trial and that the doctors are being firm with him on what will help him the most. Will be praying for all of you!
    58 days ago
  • NEW-CAZ
    So hard on Pat and hard on all who love him Liz, my heart goes out to you.
    Pat will be in all my prayers as will your family.
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    58 days ago
  • GRAMDEB16
    Thank goodness you are a strong woman because your son’s family really needs your strength! I understand your son not wanting to take pain meds, but his body needs them right now to focus on getting better. My prayers are with you.
    58 days ago
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