The Challenges Continue

Both Christopher and I continue to face many challenges...yet somehow by the Grace of God we seem to persevere.

The past few months have not been easy. Because of the financial strain from not having had viable part time work, (working full time right now is not an option), sadly, we had to move out of Atlantic Beach. Thankfully we had my parents home to go to but it is over 80 miles south of where we were living. Though he did not complain, this came as a disappointment to Christopher as he could not return to his old school on a regular basis. He was actually looking forward to going back to school, believe it or not, because he was not only entering high school but also not tied to the hospital treatment rigors and able to get back to a "normal" schedule. So we thought. He does participate in virtual school but it is no replacement for the real thing and being home alone all day does not make for a healthy spirit.

(My parents had to stay up north due to their own medical issues)

Christopher also suffered a big disappointment when his plans to move to CA in June did not pan out and his summer vacation was cut short.

Might I mention we have also battled some serious issues together... which have not always harmonious... to say the least!

Yet today, despite the adversity and unexpected changes, we remain a team.

And although life does goes on, it has been far from "getting back to normal".

This past week has been no exception to these constant challenges.

Christopher had his protocol scans on Thursday and late Friday I FINALLY got the call from his oncologist. (A perfect example of MY biggest challenge...waiting and wondering and still not getting any answers!) His chest CT of the lungs still show areas of concern and there is even a new lesion that is being watched, but this was good news. With his not being in remission, we did not expect it to be clear, just hoping to avoid the inevitable surgery.

The not so good news is that the bone scan revealed a lesion on his pelvis. It was not clear if this was in fact his original osteosarcoma that further metastasised so want Christopher to have another x-ray of that area. Because of the ambiguity of that phone call, I emailed Dr. O'Connor on Saturday (his surgeon at Mayo Clinic that did the amputation) and asked her to look at his scans. She emailed me back almost immediately and while she said she is concerned, until we do an MRI of that area, with a contrast dye, she will not know for certain that it is tumor. She assured me that whatever it is we can handle it and she will do what she can.

And the waiting game continues. Chris will have a follow up appointment with Dr. O'Connor on Wednesday after his MRI. I am praying that it is bone atrophy, or even a stress fracture?Something bogus on the bone scan perhaps?

Speculation until Wednesday, so Chris and I will try and stay with what we know today. As he has said throughout this ordeal...no sense worrying about something that hasn't even happened yet. If only my brain operated like that!

Fortunately we are blessed with being surrounded by a lot genuinely caring souls. I have learned to accept help when I need it (Ok still working on that but getting better!) and cannot begin to express my gratitude to my family and friends for their continued support and kind gestures. I think you all know who you are and I deeply thank each one of you. I want to also give a heartfelt thank you to my brother who has taken on a lot of my financial overload which has been one of the hardest things for me to deal with. Having some of that stress relieved allows me to focus on Christopher and his medical needs and also take better care of myself.

Sometimes I don't know quite how we do it, but what I do know is we do not do it alone.

I will continue to keep you all up to date as it unfolds.

With much love, Patty

On a better note...stay tuned for photos from The Florida Forum where Ted Koppel will be speaking and Christopher and I will be special guests. Christopher is the profile patient and his "story" will be presented in an attempt to bring awareness of the mental as well as physical difficulties involved with a serious illness.

(The above picture is from a photo shoot for another upcoming fundraiser for Wolfson's Children's Hospital)