Hi All, Happy Tuesday!
We had our first visit from Agrace Hospice today at our house. They checked Julie's vitals and went over her medical history. One thing we are proud of and still shocks everyone is that both Julie and I are in our 60's and are on no prescriptions! Now, as I mentioned yesterday, Julie has been taking an antibiotic so technically that's a prescription... but I'm talking... no cholesterol, blood pressure, etc... typical medications that the doctors expect 60 year olds to be on. Even pain medicine. They are amazed that Julie controls her pain with CBD gummies, and MAYBE one Tylenol a day especially lately with the fevers in the afternoon... but really we're both healthy! Julie would be fine, if it wasn't for this tumor recking havoc on her body.
I think I already said this ... but I'll say it again ... we did decide to stop the Burzynski antineoplastons... Unfortunately, they have stopped working and was probably making her more tired. But we are staying with our other alternative protocols. We are thankful for the time we had with the Burzynski's especially our nurse Patrick, who continues to check-in with us even though we have stopped the plan.
We did talk about her hemoglobin and the hospice nurse suggested we try to give Julie supplemental oxygen and see if that will give her more energy. Since hemoglobin has a connection with oxygen and lungs (I'll let you Go0gle the full details)... we figure it's worth a try, we've tried everything else. But also, makes me wonder, why a doctor hasn't suggested that... I'm finding out that hospice now is different than the old hospice. I always thought the old hospice was called when you were checking out! The new hospice is to give a person and family the extra support for the patient and care givers.
As of now, we plan on having a hospice nurse come to our house once a week. If Julie is up for it we will still try to make our doctor visits and still try to do her IV infusions... (maybe I can still get her to go to acupuncture) ...one day at a time! As for eating ... I'm still trying to shove food in front of her!
I also want everyone to know that we are not giving up .... never did ...never will !!! We totally trust in Gods will ! Like it says in the bible .... no one knows the hour or the day .. be prepared and be ready... but never give up ! I really want to thank my family and friends and neighbors for being there for us. Julie wanted to see my sister Jolene, and Bam ... she was in the car and here in 2 hours from her house in Illinois! All 3 of my sisters are planning on stopping by this weekend, can't wait to see them ! So thank you everyone again ... Please keep spreading the love and prayers!
Thanks for the continued prayers!
Love to all,
Joe and Julie
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