Bad news/Good news

December 14th- Routine MRI(scheduled every 3months)
December 15th- Follow-up appt. with Dr. Hudgins, the neurosurgeon, to review the results of the MRI...Bad news. One of the very small tumors in Patrick's brain is now larger. Also, there is tumor thickening in the ventricles of his brain- if the canal between the ventricles gets too thickened with tumor growth, Patrick would need a shunt. There also is thickening of tumor matter all along the spine/spinal cord. Dr. Hudgin's didn't have any good ideas about what to do- just follow-up in 2 months. Needless to say, Ralph and I are very glad that we have an appt. with a neurosurgeon at the Cleveland Clinic in a few weeks.
December 16th- Scheduled appt. with Dr. Hord. Dr. Hord goes over the MRI results in great detail. He has heard about a chemotherapy drug called Temozolomide which is possibly effective for tumors of the brain- generally chemo drugs do not work for tumors of the brain. He will look into this possibility. In the meantime, he will go on the internet and check with his colleagues for possible treatments. He starts the paperwork for our appt. at the Cleveland Clinic.
December 17th- Dr. Hord calls both Patrick and Ralph and leaves messages on their cell-phones. Patrick is working at the coffee cart at the hospital and Ralph is working in the Pharmacy. Ralph stops at the coffe cart to see Patrick and they compare phone calls. They meet up with Dr. Hord and he tells them that he has found a research study for ependymomas of the brain and spinal cord. One of the drugs they are using is Temozolomide! Now we can count on the Insurance to probably cover the cost of the drug. The research study was started at MD Anderson Hospital in Texas- a well-known cancer research hospital. Eight other medical centers are conducting this research. Dr.Hord finds the closest one to us is in Pittsburgh- just under 2hrs away. We start making phone calls on Monday. Ralph continues to make phone calls on Tues and Wed. By Wednesday afternoon we have an appt. with Dr. Lierberman at the University of Pittsburgh-this Thursday-Dec.30th at 9am. We will drive to Pittsburgh Wed. afternoon, find the medical center, then stay at the hotel near the hospital.
I am still trying to process everything that has happened...Patrick is doing well. He wrote a blog on Sat. the 18th. You can read it by following the link on his facebook site or you can go to:psalmtwentythreesix.blogspot.com.
We thank and praise God for working through Dr. Hord to help us find this study. We are also thankful for wonderful co-worker's and bosses who are helping us with time off from work.
Thank-you for your continued prayers and support,
Ralph and Priscilla
PS- We spent Christmas eve and part of Christmas in the hospital. Patrick had a severe headache, numbness in his left hand, a short period of slurred speech, and nausea- which turned into continued vomiting for about 4 hours. The CT scan showed no changes in the brain, so they think he probably had a very severe migraine- no doubt aggravated by the nasty tumor cells in his brain!
We had a very nice belated Christmas on Sunday.

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.

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.

Mom's blog...

Ok, now I'm ready to tell everyone about our roller-coaster day. So much happened in 5 hours time...I will list what happened in chronological order.
10:00am-Appt. with Dr.Andrews at Akron Children's Hospital. He examines Patrick quickly. He looks at the print-out of some of the MRI pictures Patrick has e-mailed me. He goes directly to Radiology to have Dr. Rubin, the head radiologist look at the CD with the MRI results from Korea.He confers with Dr. Hudgins, the new neurosurgeon at Akron Children's. We wait in Dr. Andrew's office while he does this. Dr. Andrews comes back in less than 30 minutes. He says Patrick probably has a primary lesion in his brain which has caused "drop" metastasis in his spine...we sit there stunned. Dr. Andrews has pulled some strings and arranged for Patrick to have another MRI of his head and upper spine. We are to go upstairs first to Dr. Hudgin's office. Dr. Hudgins greets us in the waiting room, talks to us briefly, then sends us to Radiology. We go to Radiology to sign in...almost everyone down there knows me and/or Ralph. Now it's getting harder than ever because we have to tell people why we are there. Betsy, the Child Life Specialist, talks to Patrick and tells him what to expect...it will be a better experience than the one he had in Korea. The MRI tech will talk to him freq. and tell him what to expect. Betsy offers suggestions to help Patrick with his claustrophobia. I give the tech some CD's for Patrick to listen to while he's in the scanner. Betsy tells us it will be at least an hour...I know from past experience that spinal MRI's take quite a long time. Ralph and I go outside to walk and talk...not much talking at this point...we are overwhelmed. Patrick is being brave.
1:30pm- Patrick has been in MRI for over an hour now. Kathy, one of the nurses in radiology comes to tell us it will be another 20 minutes.
2:15 pm- Patrick is finally done with the MRI. The radiologist had requested some additional "views", so that is why it took longer. Ralph and I are holding up OK...we're expecting the worse.
2:30pm-We're waiting in Dr. Hudgin's office to see him and hear the results of the MRI. I'm talking to Patrick and telling him what to expect if it's cancer....Medport for IV chemotherapy, radiation treatments, etc. This is treatable, but it won't be any fun. Patrick is ready for a fight.
3:00pm-We go in to see Dr. Hudgins...the brain scan is negative!!!! I want to jump up and down and cheer. Patrick has a myxopapillary ependymoma-a benign tumor which the doctor has treated many times before. He says Patrick has the classic symptoms, especially the increased tightness and pain at night. He actually has 2 of these tumors-the primary one at L2(middle of the back right at the end of the spinal cord, and the second one being further down extending into the coccyx. The areas of "metastasis" were actually pieces of the original tumor which had "exploded" at some point and showed up as smaller dots on the spine. These are of no concern. The tumor below the spinal cord will be treated with radiation. Patrick will have surgery on the main tumor Monday. The doctor will biopsy it and remove as much as possible. What remains will hopefully be taken care of by radiation.
Neither Ralph nor I had ever met Dr. Hudgins before as he has only been at Akron Children's for 4 months. We were very impressed by him. He answered all of Ralph and Patrick's questions. I asked 1 or 2 questions, but was trying to concentrate on everything the doctor said so I wouldn't forget. Dr. Hudgins has done this surgery many times in the past...he told us of possible complications, but said they haven't happened to any of his patients yet.
Monday, April 12th at 11:00- Patrick will have a Laminectomy to remove as much of the tumor as possible. He will have to lie on his stomach for 2 days. From my past experience working at Children's- he will probably be in ICU the first night. After 2 days, he can get up and probably go home!!
At some point, he will start radiation treatments-every day for about 6 weeks is what we're expecting, but we'll know more after Monday's surgery. He will probably have radiation at Akron General Hospital which is just a block away from ACH. I have worked with the people in their radiation oncology center and am very confident in their skills/knowledge.
We are so relieved...praise the Lord for leading us to Dr. Andrew's...he made an exception for Patrick, because the age cutoff at ACH is 21yrs old. Now we don't have to travel to Cleveland and try to negotiate through their big, scary system!
....and so the journey continues....

Day 1 is done...

I talked to mom about 10 minutes ago. They had left the hospital and were headed to lunch. It has been quite the day for them. It appears that there are actually two tumors. But it looks like they are both benign. Patrick is having surgery on Monday to have one of them removed. The other one they will take care of with radiation. There is a lot more to the story, but I will have mom post all of the details later on this evening.

Still waiting...

I sent a text to mom at 12:30 today wondering if they were still at the doc. Patrick texted back at 2pm to let me know they were still at the hospital and would call later. I'm sure they have some news, but as of yet nothing to post here.

Starting the Journey

If you've found this site it's probably because you already know Patrick's story. This morning he is headed to see Dr. Andrews at Akron Children's Hospital. We are hoping to begin the process of treating his tumor and finding out whether it is benign or not. We'll keep you updated here as best we can. Thanks for all your thoughts and prayers.