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!

Update on Patrick-Sunday, April 18th

Sorry we haven't posted since Patrick came home from the hospital....Ralph and I took several days off a week and a half ago when Patrick first came home, so we had to go back to work this past week. Needless to say, it's been a busy week. Patrick had his surgery on Mon. the 12th-see Emily's post. By Wed. eve. he was ready to come home. Ralph got off work early(he works at Akron Children's in the pharmacy), so he was able to come and help get Patrick into the car and then help him into the house...it wasn't easy, but Patrick is a real trooper! Patrick has had a lot of pain, but is slowly getting stronger. He was able to walk from his room to the living room by himself this eve.- and sat at the table for dinner. We have to keep reminding ourselves that if Patrick had had this surgery 10-15 years ago, he would still be in the hospital being taken care of 24/7...so we still make sure someone is with him all the time. Thank-you to Uncle Elson and Aunt Michelle for staying with Patrick Fri. afternoon and to Lauren for staying with Patrick on Thurs. after he got home from the hospital. Dad is coming tomorrow afternoon so I can run some errands and get my hair done for the wedding!
So, phase1 is completed. Now we start phase 2 with numerous doctor visits...Patrick sees the radiation oncologist on Tues.,Dr.Hudgins on Wed. to get the staples out(he has 22 staples in his back- we counted!!) and Dr. Hord on Thursday (the oncologist at Akron Children's). We're trying to get Dr. Hudgins appt. changed to Thursday, otherwise we'll(Ralph) will be going to Akron 3 days in a row!! Thankfully, Ralph is off all three days!!-can we say "DIVINE PROVIDENCE"!!! So, I will be able to go to work uninterrupted.
Patrick will be getting radiation treatments 5 days a week for 6 weeks- to try and shrink the second tumor that is below the spinal cord and continues to cause discomfort. Removing that tumor surgically would have been too complicated and risky.
Because ACH does not do oncology radiation, Patrick will have his treatments at Akron General Hospital- just a block away from ACH. I am familiar with the doctors and techs at Akron General from when I did sedations at ACH, so am comfortable with Patrick going there. They are a very skilled group of professionals. Dr. Hord at ACH will be coordinating Patrick's overall care-follow-up blood work, etc. Dr. Hord is the head of the Hematology/Oncology dept at ACH and has been very helpful thus far. Ralph and I are very happy to have him taking care of Patrick...again," DIVINE PROVIDENCE"!
Thank-you, Thank-you, to everyone for your continued prayers and support. We continue to feel the Lord's presence in a very real way.

Visiting Patrick

I went to sit with Patrick for a few hours today. My parents have been staying with him around the clock since yesterday. I took my turn for a little bit this evening. He probably doesn't need us to be there every second, but all the machines he is hooked to alarm at the littlest things. So it's nice to have someone to page the nurse and such. Plus he has to lay on his stomach at all times and that makes it hard to drink, etc. Patrick has had a lot of visitors which is very nice. Although the meds make him pretty groggy so he dozes off at random times. The doctor says if he can get up and walk tomorrow then he will be able to go home. We will also get the official pathology report tomorrow (most likely it will just confirm the doctors original diagnosis).
Thanks to everyone for all the cards, notes, facebook comments, etc.

Update on the surgery

So, the tumor came out easily- all in one piece, or rather, all in one golf-sized ball. The pathologist came into the OR and confirmed that it was a myxo....benign tumor just as Dr. Hudgins thought. Because Patrick is so physically fit-i.e. strong muscles- he will have more pain than those of us who are not so fit...but they are keeping him comfortable with strong pain meds through a gadget called a PCA pump. He's lying flat on his stomach-for 2 days- but so far it's not bothering him. The bed is very comfy with an egg-crate mattress on it. He is allowed to eat whatever he can tolerate, so Dad will be getting him a yummy milkshake later this eve. I plan to stay over-night with Patrick, then Ralph will come in the morning...I have to go to work tomorrow-just across the bridge at St.Thomas Hospital. Emily will take her turn staying with Patrick, so one of us will be with him around the clock. So far, everyone taking care of Patrick has been very efficient.
Dad(my dad), Joe and Gayle came to the hospital this morning and stayed with Ralph and I until Patrick was out of surgery...Thank-You!!! It made the time go so much faster. Dr. Andrews stopped by to see us in the waiting room a couple of times and kept us updated on Patrick's progress in surgery.
We're hopeful that Patrick can go home sometime on Wednesday. He will probably start radiation in a couple of weeks. We'll keep you posted. Thank-you all for all your prayers and thoughts. It has made dealing with all of this so much easier.
Love, Ralph and Priscilla, Emily and Patrick.

Patrick is out of surgery

I just got a call from Dad. He says Patrick is out of surgery. Everything went fine and there were no complications. They were just waiting to be allowed to see him. I'm sure mom will have more details later.