Oct., 2010 posts

Saturday, October 2, 2010 3:21 AM, EDT 

EVENTFUL WEEK........

Well some may have heard this already; This past Tuesday I picked Dylan up from school and we went to get lunch.  During lunch Dylan was laughing and joking with everybody, then all of a sudden he just crashed, fell asleep right on the table!  When we tried to wake him it took several times to do so.  I thought this was odd for him because he is not normally like this.  Then later that evening he was so tired he could barely stay awake during homework, let alone remember what he was doing.  On Wednesday morning after sleeping at least 9 hours, I tried to wake him for school and it literally took me 5-10mins to get him to even open his eyes!  Then during breakfast he had bags under his eyes and he was dragging.  I figured it was probably from the recent radiation, but I went ahead and emailed the neurosurg doctor at UVA anyways.  The doctor called me and explained that I need to get him back in to their ER as soon as possible, that it could be nothing, it could be fatigue from returning to school, or it could be fluid building back up in his brain.  They wanted to check him  just to be safe.  So, I drove Dylan the 2 hours to the UVA ER on Wednesday.  The ER was expecting us, they got us in a room, put an IV in Dylan, drew some blood and got an MRI of his brain done. 

After sitting there for 6 hours we were finally told that the MRI looked the same as the one previously done 2 weeks prior, which meant the fluid did not increase in his brain.  His labs were also normal, so after consulting the radiation team, we were told that Dylan has a VERY RARE (imagine that), side effect of the radiation called, SOMULANCE SYNDROME.  The doctors gave him a prescription for Prednizone to take for 2 weeks, it is supposed to increase his energy. 

So we are back home now after having to get a hotel room that night because we did not leave the ER until 7pm and I did not feel comfortable driving back at night in the middle of a storm.

Please continue to pray, Dylan goes back to UVA this coming Tuesday, 10-5-10 to be seen by the opthalmology specialist.  He wants to see if his optic nerves are doing any better since the surgery and radiation.

I will update again after that appointment.

Thanks and God Bless! 
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Childhood Brain Cancers Posted on Sunday, October 03, 2010 2:04 AM THANK YOU ALL FOR READING OUR BLOG........Knowledge is Power!! DO U KNOW….. Brain cancers account for about 15% of pediatric cancers and are the second most common type of cancer in children. Since the brain controls learning, memory, senses (hearing, visual, smell, taste, touch), emotions, muscles, organs, and blood vessels, the presentation of symptoms varies accordingly.Treatment of pediatric brain cancers (and non-malignant brain tumors) is more complex than is the treatment of some of the other childhood cancers. Surgery to remove the tumor is not always possible, either because the tumor is inaccessible or because surgical removal of the tumor would damage critical parts of the developing brain. Inoperable areas of the brain include the brain stem, thalamus, motor area, and deep areas of gray matter. The prognosis of a brain tumor depends not only on the type, grade, and size of the tumor, but on its location in the brain. Another reason that malignant brain tumors can be difficult to treat is because the blood-brain barrier prevents chemotherapy from entering the brain and reaching the tumor when given systemically. ________________________________________________________________ Good News Posted on Thursday, October 07, 2010 10:33 PM Hi Everybody, Well we took Dylan to see the opthamologist at UVA on Tuesday, he had another 4hour exam.  Dylan had a really hard time and started crying when they numbed his eyes and when they had to look into them.  But, the good news is, the doctor said Dylan's eyes have improved dramatically from the first time he saw him in June!  We don't need to go back to see him until next year unless there are complications with his eyes. Finally some of my hard work and persistance is paying off......you all have heard me talk about possibly getting a second opinion at Duke, well WE HAVE AN APPT FOR November 11, 2010!!!!!  I am so excited!!!  : ) Dylan will have an MRI at 930am, then at 1230 we will be seeing a neru-surgeon and a brain tumor specialist at The Preston Robert Tisch Brain Tumor Center!!  All these doctors do is treat brain tumors here, unlike UVA!  This MRI being done is the same type of MRI that UVA wanted to wait until December to do, so we will get it done at Duke, and get the second opinion at the same time. We may have to stay at a local hotel for a few days depending on what the doctors decide, so we will be having a couple fundraisers to raise money B4 we go, to help pay for travel, food, and lodging. Please continue to pray for Dylan and our family, I will send something out shortly about upcoming fundraisers. (WE STILL HAVE BRACELETS AVAILABLE TOO!) Thank you all and God Bless! Kerry _________________________________________________________________ Just The Facts..... Posted on Saturday, October 16, 2010 11:06 PM Did you know: #1 - Childhood cancer is the #1 killer disease of our children, more than from asthma, diabetes, cystic fibrosis, congenital anomalies, and pediatric AIDS combined?  #2 - 1 in 300 children will be diagnosed with cancer before age 20? #3 - Each year 3,000 children die and 40,000 are in treatment.  #4 - The National Cancer Institute's (NCI) federal budget was $4.6 billion. Of that, breast cancer received 12%, prostate cancer 7%; while all 12 major groups of pediatric cancers combined less than 3%!  #5 - Childhood cancer has a huge societal impact - 180,000 potential years of life are lost to it EVERY year!  And 60% of survivors face long term health issues!

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Monday, October 18, 2010 11:54 PM, EDT

 

UPDATE:

At our last visit with the Neurology team at UVA we were told we would not be coming back up there until December for an MRI.  Well....last week we got a letter in the mail saying that Dylan has an appt on 10/25/10 with the radiation dept.  So I called the nurse and she told me we do have an appt., it is for his 6wks post radiation appt. 

She also told me that the doctor in radiation would be ordering scans to look at the brain tumor, however, they will be at a later date, not this appt. So, basically, we will be driving 2 hours to see the radiation doctor for about 10-15mins and then turn around and drive back home 2 hours, sound like fun? 
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Dylan appt. Posted on Sunday, October 24, 2010 10:26 PM Tomorrow Dylan goes to UVA for a 6wks post radiation appt.  He has been off his prednizone for about a week and a half and he is showing signs of the Somulance Syndrome that the doc said he had before.  I am kind of worried about him because he keeps sleeping a lot again, hard to wake in the a.m., puffy eyes in the a.m., and throughout the day he gets bags under his eyes and looks exhausted.  Hopefully tomorrow the appt will go well and Dylan won't have to stay at the hospital. PLEASE PRAY FOR HIM!!!!

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Friday, October 29, 2010 10:30 PM, EDT

Dylan's Appt.

Well Dylan's appt.  on 10/25/10 went well, the radiation doctor said that Dylan being tired again like he was before is probably a combination of him growing and the radiation.  He did not want to put him on the prednisone anymore though because it is a steroid and he does not want him to have anymore steroids.So, this appt. pretty much went as we expected, Mike drove Dylan the 2hrs to UVA, they waited 30 minutes for the radiation doctor, then only saw the doctor for 10mins!  During the appt., the doc asked a few questions, did a quick exam and that was it!  Then Mike had to drive 2 more hours back home.  I was unable to go this time because Jada was sick, it's probably a good thing I did not go!  All I can say is....I AM SO GLAD WE ARE GOING TO DUKE BRAIN TUMOR CENTER IN A COUPLE OF WEEKS!!!! 

I will update again soon, thank you all.

Kerry

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