June, 2010 posts

THE BEGINNING

Saturday, June 5, 2010 7:00 PM, EDT

So we are at UVA right now, in the pediatric ER, we talked with the neurosurgeon here and he said after the MRI today, that Dylan will have to have brain surgery to alleviate the fluid and try to figure out what the mass and lesion are, and hopefully remove them. The surgery will not happen until Tuesday, (early a.m.), so we will be up here with Dylan.

I would like to ask everyone to please join our family and friends in many prayers for Dylan and the steady hands of the surgeons throughout this VERY SCARY process.

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Sunday, June 6, 2010 10:30 AM, EDT 

Dylan had an MRI early this morning around 130a.m. and we have seen the MRI (early Sunday morning) we talked with the doc, he will do surgery Tuesday, he will cut open his head on the top left about 6inches behind the hairline, then he will pull back the skull and place a scope with small hole into brain and make a new pathway for the CSF fluid to drain from, b/c the pineal gland in his brain is partially blocked not allowing all the fluid out causing pressure on his brain and severe headaches, balance deficits, and memory loss. We have seen these signs in Dylan in the past couple months but just chalked it up growth spurts, migraines, and puberty. After the doc makes that pathway he will use another scope to go in the brain and clip a piece of the tumor, which has a cyst of fluid inside of it, and send to specialist for dx of tissue. Doc seems to think it is a Gerinoma, if it is, it is highly respondent to chemo and radiation to shrink it. If doc can't get the tissue or not enough for dx then he will get his team together to make plan B which involves more in depth surgery of entering through back of head, which is much more dangerous, to try and get tissue sample or possibly remove. So as of right now we are sitting and waiting until surgery, doc does not want him going home at all in case Dylan gets worse before Tuesday. He was given adavant this a.m. at 115 for the MRI and his balance has not returned 100%, he is not allowed out of bed by himself, his pupils are more dilated than normal, so the neurosurgeon and nurse are keeping close eyes on him. Please ask everybody you know to pray for Dylan and the hand of the surgeons through this process.

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Tuesday, June 8, 2010 2:57 PM, EDT 

Dylan went to O.R. this morning about 730am we met all the people that were going to be in the O.R. with Dylan. Dylan was happy did not cry at all, my husband was making jokes to make Dylan laugh and try to take his mind off things. We all prayed with Dylan and assured him everything would be fine b/c he is in God's hands and there are thousands of prayers going out for him. I could tell he was a little nervous but he kept saying he wasn't, almost made me cry, but I kept it together. The nurse called us as 1010am to let us know the doc just made the first incision and so far everything was going fine. She will call us again if he is in there for more than 2 hrs, and I will send out another email when we know something. When Dylan comes out of surgery today we will be in the PICU for a couple of days so I don't have the new rm# or ph# in the room. So you can contact me by email.

Thanks to all of you!

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Tuesday, June 8, 2010 5:45 PM, EDT 

Hi Everyone, 

We just talked with doc, he said he is very confident the surgery went well and that he got enough tissue to test. Dylan still can't keep anything down on his stomach, so the doc ordered a CT scan to make sure everything is ok in his brain. Dylan has some swelling on top of his head, some is to be expected but the doc just wants to make sure. Right now we are monitoring Dylan and depending on his recovery in PICU and the CT scan, depends on how long we will be here. We have to wait 3-5 business days for results of biopsy, but doc says that doesn't always mean we have to stay here for that amount of time, so we will see.

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Wednesday, June 9, 2010 12:30 PM, EDT 

Hello Everybody,

Well Dylan had a pretty good night, he only threw up one time and that was at 3am, and nothing since. The doc came in the a.m. and told us the CT scan they did yesterday looked great there was no bleeding from taking the tissue, and everything else looked good. The ventriculostomy (new gland pathway for draining fluid) will take time to see if it is functioning properly.The doc said we have to wait on the results of the tissue biopsy, 3-5 business days, but that depending on how he recovers today, we may be able to come home tomorrow or Friday!!! When we do come home it will be a long process and he will be on restrictions. We will have to keep going back and forth between home and here, as needed for testing and treatments. Also depending on the results of the biopsy, we may be turning around and coming right back up here next week.

Dylan is doing GREAT today, the nurse took out his catheter, and he was able to sit on the edge of the bed without dizziness or headache, then he walked around the bed with me very slowly and sat in a chair w/out complaint of anything. While seated in the chair he played video games and all of his equipment was detached and I washed him up and he brushed his teeth. Then the nurse in PICU told us that we were leaving PICU and returning to PEDS floor, so Dylan was able to walk with assistance from his old room to his new room w/out complaint of anything. On the walk to the new room, we passed the Physical Therapist and she was very impressed he was up and moving around so quickly. Sooo we are in the new room now and Dylan is relaxing watching tv about to try PB&J sandwich

(this will be first solid food he will try, hopefully he will keep it down),

and then after lunch the Physical Therapist will come get him for therapy.

For those of you who may want to help, we could use any gift cards, monetary donations, or meals for when we return home, because this is going to be a long process for our famiy and I don't know when I will be able to return to work. I will be at home taking care of Dylan and we will still have to go between facilities for awhile.

We all TRULY APPRECIATE everyone's help, concerns, and prayers throughout this process and please continue to pray for us since it could take many more months of treatment for Dylan.

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Thursday, June 10, 2010 9:06 AM, EDT 

Good morning everybody,

Guess what? The doc came in and we are leaving the hospital to come home in about 15minutes. YEAH!!!!! We will be on the road for about 2hrs and we can be reached via email.

Talk to you in a bit!!!!!!!

Kerry/Mike

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Thursday, June 10, 2010 2:30 PM, EDT 

Hey everybody,

We all made it home safe today around 130p.m. Dylan is doing fine, he does have a lot of swelling around his eyes, nose, and ears, however, the doc saw him this morning and was confident that it is normal. He is still on a lot of meds including antibiotics. So we are now waiting for biopsy results, possibly Monday or Tuesday, than depending on the results we may have to return to UVA next week. Thanks to everybody, we would still like everyone to pray, we have a long road ahead of us.

Thanks to All,

Mike/Kerry Prater

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Friday, June 11, 2010 3:37 PM, EDT

Good Afternoon,

Just wanted to update everybody on Dylan status. We were called by one of Dylan's doctors and she told us she wants back at UVA on Tuesday 6/15 at 930a.m. We do not have the biopsy results yet, there is a pediatric neuro specialist coming in from D.C. to work at the UVA clinic and he wants to see us. I am assuming the biopsy results will be there by then since it will be the 5th business day. I asked the doc if we would be staying at the hospital, she told me no, that we are just meeting to get results and make a plan for treatment. However, we are going to pack bags and be prepared this time.

Please continue to pray, and I will update you as soon as we know something.

Kerry/Mike Prater

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Tuesday, June 15, 2010 10:56 AM, CDT

Hi everybody,

We are still at UVA right now and the test results are still not back!!! The specialist wants to and needs to get another SPECIAL MRI and spinal tap, and they drew more blood today. The specialist needs to physically see the MRI to make the proper EXACT diagnosis and does not want to rush into treatment unless we absolutely have to. (whatever that may be)

Sooooo they are trying to schedule these tests for this week, up here at UVA, and Dylan will be knocked out so they have to get a pediatric anesthesia specialist to give him the medicine. Then the neuro specialist will get all test results together and review them with us in person, either up here at UVA, or we may have to drive to D.C. To see him around the 29th of this month. He will also set up a treatment plan for Dylan. So we will be leaving here soon to come home, and have to turn around and come back up here this week and again on the 21st!!!!!

I tried to get the doc to get the tests scheduled for today or tomorrow and we could just spend the night tonight, but the doc said they don't think they can get him in that fast b/c he has to have the special peds anesthesiologist administer the meds.

Sorry about the long story, I am just a little annoyed and definately TIRED of waiting. Reminds me of the military, hurry up and wait for everything!!!

Kerry 

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Tuesday, June 15, 2010 5:39 PM, EDT 

Hi Everyone,

Thanks to all of you for praying, your support and words of encouragement.  I read these all to Dylan everyday.  We are home from UVA now relaxing and one of our neighbors is bringing us dinner tonight.  Thank God because we are all tired and I am exhausted!!

We have not heard anything else about the biopsy, and the doctor told me she will call me tomorrow to let me know what day we need to go back to UVA for Dylan's other tests.  I would not be surpised if we go back on Thursday or Friday this week.

Will update again soon.

Thanks to all of you!!!!

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Wednesday, June 16, 2010 7:12 PM, EDT

Hi there everybody!!

I talked with the specialist from D.C. (Dr. Packer) today.  He got the pathology results back that we were supposed to have yesterday.  He told me that Dylan has officially been diagnosed with a "papillary tumor of the pineal region"!!!!  Yeah, I cried too!  The doc is pretty sure that it is cancerous, our upcoming tests will confirm this and let us know what level of cancer it is.  There are 4 levels: 1=benign, 2-3can go either way, 4=very bad, can spread to other areas in the brain.

Basically, this is a VERY RARE type of cancer and has only been detected in 54 people in the United States, (most of them adults).  The doctor wants to make certain that he is correct with the diagnosis (thus the further tests), and then it will boil down to him and his team deciding whether to treat it with chemo and radiation, or to try and surgically remove it.  Both have side affects, the worst side affects come from the surgery.  I Googled this and got 4 reports, with different outcomes, some good, some bad.         

We go to UVA again on 6/21 for a small MRI, removal of stitches, and talk with docs again.   Then we wait until 6/30, go back to UVA and get extensive MRI and spinal tap, with Dylan sedated.  Then we wait for test results and meeting with docs for treatment plan.  (unless something changes)

Please continue to pray for Dylan, my sanity, and our family!!!

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Hi Everyone,

Dylan has been doing well here at home, despite his cabin fever!  He did get to go outside and run around last night for a little bit, he had fun, and he said it felt good to get out of the house.  Although, Mike and I were TERRIFIED!  I had to verbally list all the things he was NOT able to do because of his brain surgery and restrictions. 

For about a week after Dylan's surgery his whole personality changed.  He went from being a happy, bubbly, energetic, goofy boy to someone with zero personality, he hardly ever talked and looked/acted like he was depressed!  We found out that was normal and mostly because of the meds he was on.  We are happy to see him starting to act like his old self again!!! 

We are relaxing this weekend, Dylan is going to see the new Karate Kid movie with some friends tomorrow, and hopefully I can catch up on some sleep!  (probably not with the girls here) Soo I will probably end up cleaning and finishing some paperwork.

We are taking Dylan to UVA again on Monday.  He is getting his stitches removed and getting a 10min MRI scan, then we are supposed to meet and talk with the docs about the MRI.  

We'll see what happens this time!

Wish us luck and LOTS OF PRAYERS!!!

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Saturday, June 19, 2010 2:16 PM, CDT 

Hi everyone,

So Dylan was not acting right yesterday. He was sleeping a lot, pupils stayed dilated, not eating very much, eyes kept watering, & this morning Dylan said his left eye was twitching again. ( like it was on the day we had to go to the ER to begin with). So I called the neuro-surg doc on call at UVA, thinking he would have me monitor him at home since we were scheduled to come up here on Monday anyways, and I explained that to him but he told me to bring Dylan to UVA today! So here we are in the ER again at UVA, we saw the doc and he has ordrd a full (hour long) MRI to be done today, and they put an IV in his arm. I predict we will be staying here, we'll see!

I will update you all later.

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Monday, June 21, 2010 9:17 PM, EDT 

Hey everybody,

Ok, I know you all are waiting for this update, soo here it is!!!

On Thursday I noticed Dylan being very lethargic, not eating very much, sleeping A LOT, this cont. into Friday, along with his pupils staying dilated, then his eyes kept watering, and on Saturday morning his left eye starting twitching (like it did the day of the original incident).  So I called UVA Saturday morning and talked to the neurosurgeon on call, told him Dylan's symptoms, and he told me I needed to bring him into the ER. 

When we got there the neurosurgeon decided to get an MRI done (lasted 2 hrs, he was given medicine to relax him & he slept thru it).  We got to see the results on the computer monitor and the doc compared them to Dylan's original MRI; the ventricles are smaller, the cyst (is inside of the tumor) is smaller, and the overall diameter of the tumor is smaller, however, the solid part of the tumor is bigger, and the doc does not know if it is because the liquid inside the cyst has decreased and tumor is just filling the area in, or if the actual tumor is growing.  So Dylan was admitted for the night for observation and got his stitches removed, and we got home last night.We go back on the 30th for a lumbar puncture under sedation, I asked for it to be done at the hospital and was told that it could not be done because they were waiting on the the orders from Dr. Packer (the specialist in D.C.) telling them how much fluid to draw and what to test for. (that's what I was told anyways!!!!) 

Don't worry, I will be calling both offices today to MAKE SUREeverything is set for our appt. on the 30th!

Sooo here we are waiting again!! If Dylan has anymore symptoms though, the doctor told me to call him again!

Please continue to pray, and if anything changes I will update everybody.

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Wednesday, June 23, 2010 7:05 PM, EDT 

Hi everybody,

Dylan is doing well here at home, we are all happy and surprised by so many visitors to his site.  Dylan has been reading them all!!!!

I just need some help, from anybody with this info:

I have spent nearly the last 3 hours on my computer trying to find organizations either locally or nationally that can help our family financially, with grants, lodging, transportation and general expenses.  Specifically with children diagnosed with cancer.  If anyone has information that may help us, PLEASE let me know!!!!

Dylan and our whole family says hi and thank you to everyone!!! 

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Hi Guys/gals,

Hi it's Dylan!! I am chillin' at home playing video games and watching T.V.  I just want to let everybody know that I am doing well at home.  I am really happy about all your comments, concerns, and prayers.  Tell everybody I say Hi, and I am BORED out of my mind!!!

Will talk to you all later!!  Hope you like the picture!

Dylan Prater

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Monday, June 28, 2010 7:42 PM, EDT

Hi everybody,

I am doing well this week.  I have been busy, Saturday afternoon I went with my friend Nate and his mom Michelle Craft to see Iron Man II, it was awesome!  When I got home that night our neighborhood had a cookout and a movie in our big backyards, I got to see all my friends, they were all worried about me.  My friend Nate spent the next 2 nights at my house, and we played A LOT of video games, and we all went to church Sunday.  Mrs. Kidd came to our house today to babysit while my mom worked a few hours, she is fun, we played board games and stuff.  Tonight my sister Jada and I are going with some friends to see the new Karate Kid movie;  I CAN'T WAIT!!!! Oh Yeah! My baby sister Kaylee turned one today, but we had her birthday party yesterday, man did she get cake everywhere!!  She liked putting her face in it and feeding it to everybody, she is so funny.  : )

As you can see I have been quit busy lately, at least I have not been bored!  I have been feeling pretty good too.  We go to UVA this Wednesday and I will be put to sleep while the docs do another MRI and a lumbar puncture, YEAH : (   We have to be there at 1215, so we will probably be there ALL DAY.  Everybody please pray for us during our trip and appt.  Tell everybody I say hi, and my mom will update here again on Wednesday or Thursday to let you all know what's going on. 

Talk to you all later, and thanks for all the cool posts!

Dylan : )

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Wednesday, June 30, 2010 9:58 PM, CDT

Hello everybody,

We went to UVA today and Dylan had another MRI done and a lumbar puncture. He got to listen to headphones with music during the MRI and did not need to be sedated for that. With the lumbar puncture they put an IV in his arm, then gave him pain meds and sleeping meds. He did great, he woke up within 15minutes after the procedure, he was talking a little funny and he was dizzy. So we stayed for about 45minutes to make sure he was ok. He said his back does not hurt and he has not had any headaches so far. So now we are waiting, AGAIN for the test results and a call from the docs. Supposedly since this was the last test to be done, the docs will get together to come up with treatment options and then meet with us to discuss them so that we can move forward. I guess we just have to wait and see!

As soon as we hear anything we will post it. Thanks to everyone for the comments, gifts, cards, and donations, we all really appreciate it!

Talk to you soon,

Prater family

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