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....