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.

Almost Finished....

So, Patrick is in his final full week of radiation. The treatments to the brain were completed last week. He continues to keep busy during the week, then comes home on the weekends to relax. He will finish his first summer semester of college next week; the last summer session will be independent study, so he will be able to spend all of his time out at Camp Carl.I will miss having him around, but am happy that he can return to some semblance of normalcy. He will have a complete MRI on the 25th of this month, then will meet with Dr. Hudgins to find out the results- on the 30th. He goes to the Oncology clinic every week for blood counts...so far those are fine- no major problems. He will need to start physical therapy at some point to increase his strength and endurance, but that probably won't happen until he's completely finished with his college classes.
I will probably wait to give an update until after we meet with Dr. Hudgins on the 30th. We are praying that things will continue to progress without any new problems. Thank-you everyone for your continued prayers.

Three down, Three to go...

So, Patrick finished up week three of radiation. He has one more week of radiation to the head...the remaining 2 weeks will be spine only. That is a good thing because the "cage" that goes over his head for the radiation is quite uncomfortable. He has started losing his hair...he's OK with that. He started his summer college classes. They are easy "fluff" courses...he has to attend a concert for his music appreciation class, so he and I will go to Cleveland to hear the Cleveland Orchestra..I can't wait. I think I'm more excited than he is...On the weekends, Patrick has been going to weddings and fishing with his favorite fishing buddy, Jake. This weekend he is out at Camp Carl- I think-? He will be out at Camp Carl again this summer. I am hoping to have a combo End-of-Radiation/End-of-College party sometime in June. He finishes up with both during the second week in June. If everything goes as expected, he should have his last radiation treatment on Mon. June 14th- not like I'm counting or anything!! It actually has gone pretty fast so far.
Keep the prayers and thoughts coming.

One down, Five to go....

So, Patrick has completed his first week of radiation. Monday, his first day, ended up being a long, grueling ordeal. First, we had to wait over an hour to go back as the main "machine" wasn't working. So they were working with an older piece of equipment which took longer for everyone to get through. Then, Dr. Fromm wanted more films-he wanted to "tweak" everything to within a millimeter. He apparently wasn't satisfied with the films that were done on Friday. A process that normally would take about half an hour took over an hour to accomplish- all the while Patrick is lying on his stomach, arms down on his side and head in an awkward position with a "mold" clamped in place to keep his head from moving!! Because everyone knew me from when I had been there with children from Akron Children's -getting radiation treatments which we had to sedate them for- they allowed me to go back with Patrick. I was able to be with him the entire time and was able to talk to him and call a time-out when it was necessary. I also coached the techs a couple of times to tell Patrick what was going to happen next...everyone was very nice to Patrick and to me. I was able to visit with Dr. Fromm and the techs- which was nice. Even though the process was exhausting, I'm glad that Dr. Fromm is a perfectionist! We took a break after the films, then Patrick finally had his first treatment. The next day, as promised, the entire procedure only took about 20 minutes-from the time Patrick walked in till he left and was in his truck...we got his truck out of storage Monday morning. Fortunately, things were slow again at work- for me- so I was able to stay with Patrick for the entire 31/2 hours- on Monday. Patrick has been driving himself to treatments since Monday and is doing fine. We got a prescription for Zofran for the nausea and it's working well for Patrick. He's feeling tired now, but the weekend off is great for him. He went to the second of 6 or 7 weddings that he's invited to this spring/summer- not including his sister's wedding in Sept.! His hair will start falling out at some point but hopefully will be growing back in time for Emily's wedding.
I will update next week...keep praying for energy and courage for Patrick and for Ralph and I to be strong...it's really hard watching Patrick go through all this.
Thanks for your continued prayers and words of encouragement.
Priscilla

Entering Phase 2

So, Patrick met with all the doctors this past week...Dr. Hudgins, the neurologist, wants to continue being involved with Patrick's care. Dr. Hord, the oncologist was wonderful!! He explained in great detail what all is/will be involved in Patrick's treatment. Thankfully, we saw him after Ralph and Patrick met with the radiation oncologist...he-Dr. Fromm-is brilliant, but is a terrible communicator. We were all confused after Patrick saw Dr. Fromm. Dr. Hord had done a great deal of research on myxopapillary epenymoma's so had plenty of good information for us. As it stands now, Patrick will have radiation to his entire spine-because of the little spots of "disseminated" tumor that are scattered on his spine, and will have increased doses to the large tumor that remains at the base of his spine and to the site where the tumor was removed from his spinal cord. Unfortunately, he also has 2 spots in the brain, so those will be irradiated also...Dr. Hord-after conferring with the other doctors- feels the benefit outweighs the risk...i.e. anytime you irradiate something, there is a chance of cancer occurring.
So, the focus on our prayers now will be:
1) That the Lord will continue to guide the doctors in Patrick's care.
2) Physical strength for Patrick as he goes through 28 treatments of radiation. These treatments will cause him to be more tired than usual.
3) A good schedule for his final classes at Akron U-so he can graduate later this summer. He really wants to finish on schedule so he can start his internship at the Chapel in the fall. We're hoping he can schedule his classes in the morning, then go over to Akron General Hospital for his radiation treatment...then home to rest.
4) Strength and courage for all of us...Ralph and I are doing well, but have many moments of sadness when we are overwhelmed and feel bad that Patrick has to go through all of this. But, we know that all things work together for good - and we know the Lord is with us every step of the way. We feel the Lord's presence through all of this and are comforted that so many people are praying for us. Thank-you!