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!
Saturday, April 24, 2010
Monday, April 19, 2010
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.
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.
Tuesday, April 13, 2010
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.
Thanks to everyone for all the cards, notes, facebook comments, etc.
Monday, April 12, 2010
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.
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.
Wednesday, April 7, 2010
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....
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.
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