09/25/2019
Thanks again for all the messages, photos and cards that have been sent to Gary. We have read every one to him and it's so great to have things to show and share with him.
Gary unfortunately suffered another very small stroke on Sunday afternoon. It did not affect him too badly and most of his abilities are still intact. He will need to get his bearings back again with walking & motor skills, as the damage affected his balance & vision a bit. We are trying to get him into acute rehab again to be able to really get therapy hours in & improve even more.
He has been doing great otherwise. His speech is still limited, but vocabulary growing every day. He is clearly benefitting from the supplements and nutrition we have been adding into his diet after meeting with a nutritionist and naturopath. we were thankfully able to use the funds to pay for these appointments as insurance does not pay for it. He has more color in his face, has energy and is sleeping really well. I can only believe that this is because we are putting all the good stuff into his body.
The reason for the repeat strokes is the cancer is causing his blood clots, even when he is on strong blood thinners. We have finally come up with a targeted therapy treatment plan with the oncologist. We are hoping that the targeted therapy will shrink the nodules and tumor down so that my dad will be at a lower risk for stroke/clots.From there we will see about additional treatments. We have been waiting what feels like forever to get him treatment and are feeling hopeful that this will begin his path to some type of recovery. Stage IV cancer is aggressive and the tumor has grown in the past 2 months. We are praying and hoping that the cancer slows down and does not get anymore in the way than it already has.
Gary is stable, but also fragile because of the stroke risk. It has been made very clear to us that he will be needing 24 hour care. I have been with my dad nearly every day for at least 8 hours, with my mom coming to fill in on her days off. Otherwise, he will need a paid nurse to take care of him and help him with all of his self care, eating, medications, etc. Home health is not covered by insurance. Also, because of his state, we are currently unsure if going home would be the safest route for Gary. They live at least 40 minutes from the nearest hospital and the accessibility of the property is going to be a challenge. Living far out there has been great for accommodating all of the rescue animals they have, but isn't the best for Gary's safety. We are going to explore options for assisted living so that Gary can be close to a hospital, but also be near his oncologist as he will most likely be needing to go in 1x a week for treatment, plus other appointments. Assisted living can cost upwards of 5k a month - and that is without any one-to-one nursing care which ranges about $200/day.
Our ultimate goal is of course to get him home, but we want to be sure it is in his best interest and safe. He may need to stay somewhere temporarily until the house is safely accessible and set up for him, and he is in a more stable position to be able to be that far away from a hospital.
These are all of the things that insurance will not cover (that we know of so far):
-nursing care (at home or in assisted living)-assisted living/board & care-if we are to need to use new clinical trial drugs on a compassionate use basis (where he is not in the trial, but able to use the drugs) insurance does not pay for them
-long term physical /speech therapy (or very limited coverage for therapy beyond rehab)
Also things insurance cannot cover when Gary goes home:-grab bars, blood pressure monitor, blood testing kit, other various medical supplies-food -supplements-personal care items
In addition regular things that we will be needing to keep my parents household running.Gary is obviously also unable to work and contribute to the household right now, so any income is coming from my mom who has had to take herself down to 4 days a week of work. Thankfully we have had such support from our neighbors and friends in helping my mom with our animals, home improvements and general support. We are so grateful.
That being said - I have raised the goal amount of the fundraiser now that we have an idea of what to expect in the coming months. We are already so appreciative of all who have already donated. Please do not feel any pressure to send more unless you feel called to. We just ask that you repost and share! Please feel free to reach out to me on the FB page if you have any questions.
Sending so much love,
Hayden
Photo: Gary hamming it up with Mitch, one of his oldest pals.
