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
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