Update....

So,we are still in a "holding" pattern. We are still waiting for the slooooow-growing tumor to slooooowly shrink-"maybe". In the meantime, symptoms persist from radiation syndrome. Patrick is able to work a few hours at the coffee cart- mostly supervision, and is keeping up with his one seminary class as well as his duties at the Chapel for his internship. He is gaining weight-yeah for Thanksgiving!! He is living in a house in Cuyahoga Falls with 4 other post-college age "kids". It's nice because now he is closer to work. When he needs to rest, he drives less than 10 minutes to the house and can take a quick nap. He's enjoying his independence also.
Patrick will have another MRI in 2 weeks, then see Dr. Hudgins again. In the meantime,I made an appt. for him with a Dr. Schlenk at the Cleveland Clinic- for a second opinion. The appointment is in January- after he goes on the Campus Focus trip to Florida.
I will post again after our appt. at the Cleveland Clinic.
Thank-you to everyone for your continued prayers....

Update on Patrick

So, Patrick continues to have good days and bad days, but the good days outnumber the bad. He is back to working at the Coffee cart at Akron Children's. He continues to take medications for nausea, bladder issues, nerve degeneration(tingling,etc. which is a side-effect of radiation but will go away eventually) and for shakiness(his hands tremble like someone with Parkinson's disease, so the medicine is what they use for that). I didn't realize that I haven't updated this blog since Patrick had his appendix out-Sept...luckily, a couple of weeks after Emily's wedding. He had a major setback after having the surgery-severe nausea and lack of appetite. The good thing that came about as a result of all his problems was that Dr. Hord-the Oncologist- got more involved in Patrick's care. He sees Patrick once a month now and is following his weight and general health very closely.
But, now it's time to move forward with a second opinion at the Cleveland Clinic. Patrick is having increased problems with his bowels and continues to have pain and lack of mobility due to the tumor that remains low on his spine. We will see Dr. Hord this Tues...he has offered to expedite a referral for us at the Cleve. Clinic. Patrick has the names of 2 doctors which friends gave to him. We will also talk to Joe and Gayle to see if the Dr. they go to at the clinic can recommend a good neurosurgeon...unfortunately, we can't see the Dr. they use because he is brain only. Everything is very specialized- brain, spine, etc. There seems to be a specialist for every body part!
So, I will post more info after we see Dr. Hord on Tues. Thank-you to everyone for your continued prayers.
Ralph, Priscilla and Patrick
PS Thank-you's go out this week for graduation gifts...type-written because Patrick's hands are too shaky to write.

The Journey Continues

We are learning more about the side effects of radiation every week...Patrick's latest symptoms are tingling in his legs and some bladder issues. He saw the neurosurgeon on Wed. and Ralph asked LOTS of questions. We were worried that the tumor was growing, but Dr. Hudgins is 90% sure that Patrick's symptoms are all related to the radiation. I told a lady at work about Patrick's symptoms- nausea and fatigue included. Right away she said his symptoms were from the radiation. Her brother had radiation and is still having issues almost 2 years later! We were told at one time that you can expect 1 week of symptoms for every treatment- i.e. 30 weeks of fatigue, etc. for Patrick.
Patrick will have another MRI next Wed. to make sure the tumor isn't growing.
He will probably start taking a drug called Neurontin- it will help the tingling feeling and is also good for pain. He is working with a very good Physical Therapist who is helping him with the pain issues.
We may or may not get a second opinion at the Cleveland Clinic. Dr. Hudgins said that would be fine...he can even give us the names of some doctors in Cleveland. We will wait for the MRI results and will wait until after we talk to Dr. Hord(the oncologist) to make our final decision.
Please continue to pray for Patrick- for strength and for his spirit-that he wouldn't get discouraged. Also, pray that we would make the right decisions.

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.