Good News! Blood work and MRI came back with good results. Here is a copy of my mom's message to our family on March 20th:
Patrick is doing very well...By the end of January, the effects of the radiation had finally pretty much gone away...minimal trembling of the hands(it was so bad at one point that he couldn't even write!),nausea subsiding, and much more energy. He is weaning himself from almost all his medications.
We went to Pittsburgh on Thursday and got a good report...no new growths in the brain or spine. Some of the spinal tumors are shrinking- none are growing. Dr. Lieberman will see Patrick in 3 months. He will have an MRI of his spine only-yeah!- no brain MRI needed.
We praise God for answered prayer!
Friday, March 25, 2011
Friday, January 28, 2011
P.S.
I forgot to say that NF2(Neurofibromatosis-Type 2)does not seem to be in the "mix" at this time. The tumor that was removed initially and the big one that remains are both Myxopapillary tumors...and Patrick does not have the Acoustic Neuroma that occurs with NF2..this is good news also...
Pittsburgh Trip #2
So,the saga continues...but good this time. Dr. Lieberman said that the neuro-radiologist saw the same thing on the MRI's from December that they saw at Akron Children's...there indeed was some new tumor-like growth/thickening in the brain, but they were not sure what it was...but now that "growth" is gone! Dr.Lieberman is trying to figure out what was going on in Patrick's brain in December!- maybe some sort of auto-immune process. So for now we are in a "holding pattern". Patrick will get some more blood work and will have a repeat MRI in March, then we will go back to Pittsburgh again. Patrick will not be entered in the research study because he doesn't have any kind of brain tumor to speak of-that's very good news! But Dr. Lieberman wants to keep following Patrick...we are very happy about this because Dr. Lieberman is very knowledgeable and is very good at explaining things at our level. He speaks very deliberately and will correct himself until he is able to explain things so we can understand.
So, we will continue to see Dr.Hord, the oncologist at Akron Children's, and Dr. Lieberman. We won't need to see Dr. Hudgins for now as there is no more surgery in Patrick's future.
The drive to Pittsburgh is pleasant-about 2 hours.
Praise the Lord for leading us to Dr. Lieberman and the University of Pittsburgh Medical Center!
Thank you to everyone for your prayers and words of encouragement- it means so much to all of us.
Priscilla
So, we will continue to see Dr.Hord, the oncologist at Akron Children's, and Dr. Lieberman. We won't need to see Dr. Hudgins for now as there is no more surgery in Patrick's future.
The drive to Pittsburgh is pleasant-about 2 hours.
Praise the Lord for leading us to Dr. Lieberman and the University of Pittsburgh Medical Center!
Thank you to everyone for your prayers and words of encouragement- it means so much to all of us.
Priscilla
Tuesday, January 11, 2011
Cleveland Clinic Visit.....
We got some good news today. First, the Dr. and his P.A.(physician's assistant) both said that so far Patrick has had all the appropriate treatments for his tumors. Dr. Schlenk does not feel that surgery on the large tumor at the base of the spine is advisable-risk outweighs the benefits. Apparently, Dr. Hudgins at Akron Children's was correct in blaming most of Patrick's problems on the radiation.
Dr. Schlenk does not see a progression of the tumors- which is what they told us at Akron Children's. Dr. Lieberman- doctor in Pittsburgh- also said he did not see a progression! So, now we have 2 specialists saying, basically, that things aren't as bad as we thought. Dr. Schlenk is going to present Patrick's case at the next tumor board meeting at the Cleveland Clinc- very cool because that means many excellent doctors will be seeing Patrick's MRI's and can give us their opinion! Dr. Schlenk then will tell us what they discussed. He looked at the brain MRI that Patrick had yesterday and didn't see anything concerning- more good news.
So,in 2 more weeks we will go to Pittsburgh and have Dr. Lieberman look at the latest MRI and review the blood work...brain tumor not a big deal? some Neurofibromatosis??? Questions we hope to have answers to....
If the brain tumor has not progressed, then Patrick will not be eligible for the study medicines- but that's fine. Patrick has actually been feeling better the last week or two...probably due to the effects of radiation finally winding down. The end of January will be 30 weeks since he had his last radiation treatment. Of course, spending a week in Florida soaking up lots of sun helped too, I'm sure!
He starts his seminary classes this week and will be going full-time.
I will update the blog when we get back from Pittsburgh.
Priscilla
Dr. Schlenk does not see a progression of the tumors- which is what they told us at Akron Children's. Dr. Lieberman- doctor in Pittsburgh- also said he did not see a progression! So, now we have 2 specialists saying, basically, that things aren't as bad as we thought. Dr. Schlenk is going to present Patrick's case at the next tumor board meeting at the Cleveland Clinc- very cool because that means many excellent doctors will be seeing Patrick's MRI's and can give us their opinion! Dr. Schlenk then will tell us what they discussed. He looked at the brain MRI that Patrick had yesterday and didn't see anything concerning- more good news.
So,in 2 more weeks we will go to Pittsburgh and have Dr. Lieberman look at the latest MRI and review the blood work...brain tumor not a big deal? some Neurofibromatosis??? Questions we hope to have answers to....
If the brain tumor has not progressed, then Patrick will not be eligible for the study medicines- but that's fine. Patrick has actually been feeling better the last week or two...probably due to the effects of radiation finally winding down. The end of January will be 30 weeks since he had his last radiation treatment. Of course, spending a week in Florida soaking up lots of sun helped too, I'm sure!
He starts his seminary classes this week and will be going full-time.
I will update the blog when we get back from Pittsburgh.
Priscilla
Sunday, January 9, 2011
Patrick- Update
Patrick made it to Florida and back- no problems!! A few of his friends from Campus Focus bought him a plane ticket to Florida- so he didn't have to endure a 20hr. bus trip.
Monday, the testing continues...blood work to see if some of the tumors could be Neurofibomatosis- specifically Type 2- which is what my brother Joe and his girls have. They have a different form, but you can have Ependymomas along with NF-2. It's all sort of confusing, but the Dr. in Pittsburgh thinks that some of the tumors may be NF-2 as opposed to Myxopapillary...Patrick will also have another MRI of his brain to determine if that one tumor actually grew or not...Dr. Lieberman doesn't think it did.
Tuesday morning we meet with Dr.Schlenk at Cleveland Clinic to get a second opinion on removing the tumor at the base of Patrick's spine.
Everything is falling in to place nicely- with the Lord's help. We are so thankful to the Lord for allowing Patrick to go to Florida and bringing him home safely...also for helping us sort out how- and where- the blood work was going to be done. It can all be done at Akron Children's. The results will be available in 10-14 days...day 14 is the 27th of this month- the day we have a follow-up appt. with Dr. Lieberman!! How's that for the Lord's perfect timing?!!
Will keep you posted.
Love to all of you-for continued prayers and support.
Priscilla
Monday, the testing continues...blood work to see if some of the tumors could be Neurofibomatosis- specifically Type 2- which is what my brother Joe and his girls have. They have a different form, but you can have Ependymomas along with NF-2. It's all sort of confusing, but the Dr. in Pittsburgh thinks that some of the tumors may be NF-2 as opposed to Myxopapillary...Patrick will also have another MRI of his brain to determine if that one tumor actually grew or not...Dr. Lieberman doesn't think it did.
Tuesday morning we meet with Dr.Schlenk at Cleveland Clinic to get a second opinion on removing the tumor at the base of Patrick's spine.
Everything is falling in to place nicely- with the Lord's help. We are so thankful to the Lord for allowing Patrick to go to Florida and bringing him home safely...also for helping us sort out how- and where- the blood work was going to be done. It can all be done at Akron Children's. The results will be available in 10-14 days...day 14 is the 27th of this month- the day we have a follow-up appt. with Dr. Lieberman!! How's that for the Lord's perfect timing?!!
Will keep you posted.
Love to all of you-for continued prayers and support.
Priscilla
Monday, December 27, 2010
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.
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.
Tuesday, November 30, 2010
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....
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....
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