January 2020 – Rylies Journey through OSA

10 weeks post amp Rylie’s First Trail Run

Running the conservation land behind our house was always a favorite thing for Rylie and I .. She would run through the woods and trails chasing after deer, rabbits.. etc while I enjoyed watching her have fun and also some meditative moments in nature. We both love being outdoors in nature. So this weekend I took my boys first on the trail and noticed it was pretty clear of snow and no real ice I could see.. So if Rylie would stay on the trail with me.. I thought we’d try it.. What a great time she had and I was thrilled to see her running in her favorite spot again

All about upping the immune system and wellness

Rylie loves her acupuncture and low level laser on her joints.. We also added in McDowells Osteosarcoma progam

We are ready to enjoy each day

After finding out that Rylie’s oncologist was leaving actually 12/31/19 was her last day .. And Rylie’s 2nd Listeria vaccine in a seris of 3 shots , which they told me they don’t have anymore vaccine for her to finish the seris. I got on the phone and called the company Aratana Therapeutics and basically the license expired in 2019 so until this vaccine becomes commercially available the only chance we have is to find another clinic that participated in the study and see if they have any vaccine left.

Another work day spent calling around the country, well only the north east really since were outside of Boston Mass. In my search I find that a NY clinic that stopped giving this due to concerns regarding the strain.. Now this is news to me. I find a clinic in CT that does have some left and will take Rylie when she is due at the end of January. so off I go getting records sent down to this clinic it would be a 3 .5 hour drive one way but were set we have the appt on a Friday am and we can stay the night close by just to make sure all is well after her procedure.

After sleeping on this for a night I decide maybe we should do chest xray’s first to see where we are. If Rylie’s Lungs have metastasized then its no point to do this trip. I call her old oncology clinic and see who is taking on her doctors patients and if we can get a set of chest xray’s. The clinic director gets on the phone and just wanted to let me know that sure they can do that , and she did send Rylie’s records down to CT however the vaccine this clinic has is NOT the same Strain that Rylie got!!!!! the only other clinic in the country that has the same strain is Philadelphia. So this now would become an 8-10 hour trip.. I am still waiting to see if they have any vaccine left however for now I think Rylie is going to have to be good with the 2 vaccines she received.

We hope this is good enough with the other protocols were doing.. some holistic approaches and Chinese medications. We are ready to enjoy each day and hope that the lungs are still clear !

As if Life doesn’t throw us enough curves

Rylie received her 2nd Listeria vaccine today.. Only to be told at pickup time that her oncologist is leaving and the practice is giving her a hard time and she doesn’t know where we can get the 3rd vaccine in the series..!!!E%$##@#&^&*&^*&*%^$%$#@$#

WHAT??

Its time for me to get on the ball and make some heart wrenching , begging calls starting in 2020. Lets pray we can finish this .