Sept., 2010 posts

Friday, September 3, 2010 10:25 AM, EDT

Hi Everybody, 

Just wanted to let everybody know that Dylan is still doing well. He has completed 18 radiation treatments so far, and the doctors say that Dylan is their best patient, better than most adults! He still gets easily fatigued with things, like running, playing basketball, etc., and he gets sleepy in the afternoon sometimes because of the radiation. Dylan started school today in Charlottesville through UVA hospital. He has one teacher and he sees her in the morning, after radiation for about 2 hours Mon-Friday. He says she is awesome! We are all doing good at the apartment, we have been going to the pool a lot, Dylan has been playing a little basketball each day on the court behind our apartment. Jada has been playing on the playground next to the basketball court, they don't stay outside long because it is so hot outside, and Dylan gets fatigued easily. We also made a trip to Monticello the other day, the kids loved it! It was REALLY hot though, and Dylan got very tired, so him, Mike, and Kaylee had to go sit on the porch of the house and wait for Jada and I to finish the tour. We are coming home today to bring Jada back since she starts school on Tuesday, she will be staying with some close friends of ours until we “officially” come home. We have to come back to Charlottesville on Monday because Dylan has school and treatments on Tuesday. One of Mike's relatives was able to get football tickets to the VT game on Monday in Washington, D.C., so he will be taking Dylan to that game on Monday night, Dylan is EXTREMELY EXCITED!!! He loves VT, he sports all the clothing up here in Charlottesville. We REALLY appreciate all the letters and care packages that people have been sending to the kids, especially the ones to Jada since she still feels a little left out when most of the mail is for Dylan.

Thank you all for the concern, support, monetary donations, fund raisers, and the prayers.

PLEASE CONTINUE TO PRAY, for the cancer cells and the tumor completely go away with zero side affects. Well gotta go, hopefully we will see some you this weekend while we are home!!! 

Thanks To All,

The Prater Family

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Dylan finished his last (25th) radiation treatment on Thursday 9-16-10, YEAH!!!! We saw the Radiation-Oncology doctor at his last treatment and he told us we would see him in about 3 months to see if the radiation killed the cancer cells. On Friday, Dylan had an MRI done and tomorrow he has an appt. with his surgeon and a new specialist from UVA, that took the place of the specialist from D.C.

In the past month, I have been researching a lot of information about this tumor and I started asking more in depth questions about Dylan's tumor and the cancer cells to the doctors. I asked about surgery and removing the tumor, I was told it was too dangerous because the tumor is actually sitting dead center on the middle of the top of Dylan's spinal cord (they do not think it is attached, but they are not sure.) I then asked about the radiation, I assumed the radiation would take away the tumor and the cancer cells, this is not true! I was told the goal is to kill the cancer cells, however, the tumor could stay there and remain the same size, shrink, or disappear. I asked how would they monitor this and was told by doing CT scans every few months. I asked the doc what they would look for in the scans and was told if the tumor SHOWS GROWTH, then that means the radiation did not work!!! I then asked, what if the scan shows the tumor staying the same size, how would they tell if the cancer cells are gone? The only other way to tell this is to have another biopsy done, which would mean another surgery.

Needless to say, I am very frustrated and upset about all this news! First off, none of this information was revealed to me from the doctors. If I had not researched and asked these questions, we would not know any of this right now! It's very frustrating for these doctors to expect us to sit around and wait, knowing that the tumor could possibly grow and that the radiation may not have worked!!!

Tomorrow at Dylan's appt., Mike and I will be asking a lot more questions like this and if we are told that we need to wait 3months to see if anything changes then we will be going to Duke University Hospital in Raleigh, NC for a 2nd opinion!

I have been researching some top pediatric cancer hospitals in the U.S. and Duke is only 3hrs away from our house, they are also currently doing Pediatric Brain Tumor trials. I talked with the nurse about all this on Friday and she is supposed to call me tomorrow to set up a date with one of their doctors to get a second opinion and possibly get Dylan into one of the trials there.

Dylan is starting to show some symptoms of the radiation. He is starting to lose some of his hair, he gets very tired, the poor thing fell asleep in Sunday School this morning. He is having some short-term memory loss and cognitive deficits, like he says something and the words come out all wrong or backwards, and he is very emotional about things. (I would be too!) The doctor said these are just temporary and it will take some time for everything to be normal again. Hopefully he will start school this week, but only a few hours a day to see what he can handle, he is all excited about going back to see all his friends.

I hope everyone continues to pray for Dylan and our family during all this, because we definitely need GOD on our side for this!

Thanks to everybody that continues to support us with prayer, concern, monetary donations, care packages, letters, and gift cards.

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Sunday, September 19, 2010 11:47 PM, EDT 

HERE'S THE LATEST.....

We still need all of this help, I am still not working and Mike is almost out of paid leave at his job. Anything helps!

We love and thank you all, god bless you all!!

The Prater Family 

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Sunday, September 26, 2010 11:44 AM, EDT 

HERE'S THE LATEST.......SORRY IT TOOK SO LONG........

Dylan completed his last radiation treatment at UVA on 9-16. He is doing well, he gets very tired and will just fall asleep, he has a little short-term memory loss, some cognitive deficits, and he is losing some hair above his ears on both sides of his head, (nothing a buzz cut won't fix). He had an MRI done on 9-17 and we met with the surgeon on 9-20 at UVA. The doctor put the MRI on the computer for all of us to see and he said the fluid in his ventricles has decreased (not completely), but enough that he does not need a shunt placed in his brain....THANK GOD! Also, the tumor is smaller, based on the previous MRI done in July, however, that MRI does not reflect anything from the current radiation. Apparently after radiation is completed it continues to work at the cellular level in the brain, meaning, if the radiation treatment comes into contact with 5 brain cells one day, it does not necessarily kill them, if they don't die then, the cell (at some point) will try to regenerate and at that time because it has been affected by the radiation, it will hopefully die instead of regenerate and spread. Sooo, to make a long story short, we have to wait until December to go back for another MRI to see if the radiation worked or not. I guess we are supposed to just sit around and wait, hope, and pray that the radiation did it's job!! I asked the doctor how they would be able to tell if the radiation worked or not, he told me by looking at an MRI, if the tumor did not get bigger, that's good because it is not spreading. (HELLO, I CAN TELL YOU THAT!) The doctor said if it stays the same size or gets smaller they are assuming that it is working! WHAT????? I asked him again, how will they know if the cancer cells are gone or still there, he said “we won't know for sure.” I asked about another biopsy to check the tumor for the cancer cells if needed, he says that would be ludicrous! After all these questions to the neurosurgeon, he tells us, I am just the neurosurgeon, all the questions that you have pertaining to the tumor treatment, you would need to ask the specialist.

WELL!!!! We were supposed to see the specialist on the same day as the surgeon, but, the nurse told us she must have misunderstood because the specialist only comes to see patients in the clinic on the last Monday of the month!! Needless to say, Mike and I were LIVID! Mike swore we would not bring Dylan back up to UVA because every time we are told we will see somebody or have a certain test done, there is some breakdown in communication of the staff and we (meaning DYLAN) are the ones affected the most by it! We literally sat in the office for 1 hour past our scheduled appt., I then asked the secretary about seeing the doc., SHE had not even checked Dylan into the computer when we got there!! So we sat there for over 2 hours before we saw the neurosurgeon, and he did a 5min exam on Dylan, then said he wants to get an MRI ordered rather quickly within the next couple of days. I told him Dylan just had one, and he did not even know about it, he said the nurse did not tell him!!! This is the kind of problems and mis-communications we have been dealing with ever since we took Dylan to UVA, we are fed up with it!  Aside from all of this, Dylan needs to now be seen by their neuro-opthamologist. In June, while Dylan was in the hospital for his surgery, he had a 4 hour exam done on his eyes by this doctor. It was not good, the fluid that was in Dylan's brain was putting so much pressure on his optic nerves that they were very swollen and were very close to causing Dylan to lose his vision. Now that the surgery and radiation is done, this doctor needs to see Dylan for his eyes and nerves behind his eyes. Hopefully with the fluid being reduced Dylan's eyes and nerves will be ok, however, if there is a problem with them, then he will need to be seen and treated for that now! We have an appt. to see the neuro-opthamologist on 10-5, so please pray that his eyes are back to normal. We also have an MRI at UVA 12-13 and we are SUPPOSED to see the neurosurgeon and the specialist on 12-20 at UVA.

That being said, I have been in contact with Duke Univ. Hospital, specifically The Preston Robert Tisch Brain Tumor Center. I have talked several times with the nurse of the doctor there that specializes in pediatric brain tumors and she has set us up to see him at Duke tentatively 12-22. I ordered all of Dylan's tests, exams, labs, charts, etc from UVA to be sent to her and they should be there in a few weeks. She told me that all this doctor does is work with children that have brain tumors, that's it!! YEAH!!! And, they are running a trial right now for pediatric brain tumors there, we don't know if this is something we will do with Dylan though. I am just happy to be able to get him in somewhere else to get a second opinion. The nurse also told me that when she talked with the doc. and told him the name of Dylan's tumor, he got all excited and wanted us to come down sooner, but we have to wait to see what the radiation will do first. The reason he got excited was, he said Dylan's tumor is very rare and it will be a challenge for him because he has never seen one! That makes me feel good because I think Dylan will get the attention that he needs to better treat or kill this tumor, instead of the doctors we have now that don't know what they are doing!Well that's all my rantings and ravings in a nutshell, sorry if I sound crazy, we are just very frustrated with UVA right now. 

On a happier note....Dylan went back to school this week for a few hours each day, however, he is not allowed to participate in recess or P.E. until October. He is not happy about this, but it is so he can get used to everything again and hopefully not get hurt. He plays outside with his friends and has homework from time to time, but he seems to be adjusting well to the routine. I am happy he is doing something other than playing video games! And, even though it makes my heart jump all the time, I am happy to see him playing outside with his 

friends. : ) 

Thanks for everybody's continued support and prayers for our family, they are GREATLY NEEDED and APPRECIATED!! 

MAY GOD BLESS YOU ALL!! 

The Prater Family  

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