Post Radiation Syndrome

We found out this week that this is what Patrick has. Unfortunately, the oncologist didn't tell us this was a possibility, so we spent several days worrying and wondering what was going on... Ralph waited most of the day last Monday to hear back from Dr. Hord. Dr. Hord and his nurse both said this was what was happening. Post Radiation Syndrome is like having Chronic Fatigue Syndrome and Fibromyalgia all rolled into one.
We all feel a little better now that we know what is going on. Patrick started Physical Therapy this past week. It will help him regain some of his strength and hopefully will relieve some of the stiffness and achy feeling he is experiencing.
Patrick is eating OK. I took him some food last Sunday- casserole, Pepperoni bread, and a can of peanuts-and a few other things. He says he's eating more than I think he is.
Thanks for your prayers...continue to pray that this ends soon. This syndrome can last several months. The director at Camp has been very understanding- so Patrick can go and lie down whenever he needs to.
Patrick is feeling OK for now...he told me to go ahead with the Open House for his graduation/end of radiation party. He loves being around all his friends and family.
Invitations go in the mail tomorrow.

Going Backwards....

So, Patrick was doing really well for about 2 weeks after his radiation treatments ended-after he went back on a low dose of steroids(Decadron). Now, this past week he is feeling very fatigued- with no appetite- almost worse than when he was having radiation every day. He is getting discouraged. Please pray for increased strength and appetite- or that the Dr. would be able to prescribe something that would help- and/or that I could think of some foods to cook/bake for him. He's out at Camp Carl and getting fairly good meals, but I'd like to take him some good, easy to eat foods. I'm just drawing a blank right now...it's so hard to see him like this.
Please pray for us.
Thanks,
Priscilla

The Journey Continues

So, you know how sometimes you hear what you want to- and filter out what you're not interested in hearing? Well, I think that's where I am, and I think, Patrick is to some extent. We were hoping to hear that the tumors(big one at the base of the spine, little ones up and down the spine)were shrinking after the radiation.But, apparently these things don't happen that fast. The tumors aren't growing...I guess that was the true goal of radiation. They may still shrink, but that could takes 3months or more. Patrick still has pain from the big tumor- and from swelling as a result of the radiation. But the good news is that a very small dose of steroids(Decadron twice a day)is taking away the pain and helping Patrick feel much better. It will actually improve his appetite too, so that's a good thing. He's going to start Physical Therapy soon so he can get his strength back and "limber"up. We're- or more accurately-I-am hoping his hair will be grown back in time for the wedding. He looks fine bald...but I'll be happier when he looks like my healthy Patrick... In the meantime, he's finishing up with one more college credit which he will do on-line. He's finished with actual class time.
I'm planning on having a small party for him on Sat.,Aug. 7th-combination graduation/end of radiation party.
Patrick is back to fishing and hanging with his friends, so I don't see much of him again- but that's a good thing.
It looks like this will be a life-long journey. For now, there will be MRI's every 3 months. No surgery unless the big tumor grows and/or starts affecting major organs.
Thanks for everyone's concern, thoughts and prayers. We're all doing fine and Patrick is in good spirits.