July, 2010 posts

Thursday, July 1, 2010 3:36 PM, EDT 

Hello,

Just a little update from the doctor......They just got the CSF (cerebral spinal fluid) tumor markers back and they are all normal as the blood markers were too.  They also sent the CSF to the pathology lab looking for tumor cells and that will not be back til next week.  Then they will email us when they get it back and then send everything to Dr. Packer (the specialist in D.C.) and make a plan from there. 

When we hear more I will send another update.

Thanks,

Kerry 
_____________________________________________________________________________________ 

Wednesday, July 7, 2010 5:34 PM, EDT

Just a small update from the doctors today.........GOOD NEWS!!!!

---All the blood work, cerebral spinal fluid, and the spinal markers came back NORMAL!!---

What that means is they saw NO tumor cells in the rest of Dylan's body!  So, the UVA docs are sending all these results along with the most recent MRIs to the Pediatric Oncology Specialist, Dr Packer, in Washington D.C. for his review. 

I spoke with Dr. Packer today via email and he told me he will look through all of Dylan's tests and medical chart from UVA, then contact us, hopefully by early next week.  Then.....we will know what stage cancer it is and the type of treatment he recommends for Dylan so we can get started with it.

Dylan has been staying very active, (as much as he is allowed to).  On Monday 7/5, he got to go swimming for the first time this summer since his surgery.  He had a blast and was very safe.  He has spent the night at one of his friends house and has had his cousin over to our house for a couple of nights.  We went to his Granny Brenda's house for Fourth of July Celebration for a cookout, and watched fireworks from her deck.  Dylan and his cousin also had fun in her driveway with bang snaps and snakes, however, the snakes grew TOO BIG and granny had to blow them off with the water hose!!!!

Sometimes it seems like nothing at all is happening with DYLAN and his brain.  I frequently have to remind Dylan about being too energetic and rough housing around a lot in the house.  He gets

sooo

frustrated because he says he feels fine.  This whole waiting patiently process is frustrating for all of us, I feel like our lives are in a holding pattern!!!

Well, as soon as we hear from the specialist we will update again, PLEASE KEEP PRAYING!!!

THANKS TO EVERYONE : ) 

___________________________________________________________________________________

Around August 10th (give or take a few days), Dylan will start his actual radiation treatments at UVA.  We were told they would last approximately 4-6 weeks and they are everyday Mon-Friday.  Mike and I are still working out the logistics on this since we have 2 other children to think about.While we were there today we were able to speak to a Social Worker and she is going to get us on the list for the 6weeks at the Ronald McDonald house, hopefully there will be an opening for us in a few weeks.  If that occurs then we think the best scenario may be to take the whole family and stay the entire time at UVA.  We’ll know more about all that after the appt. on August 3rd.   

We also talked with a representative from The American Cancer Society and she is in the process of trying to get us some financial assistance from various sources, to include several pediatric cancer groups.

That being said, we have a few weeks for some fun, and hopefully everyone will join us with the fundraisers coming up that my friend Michelle has planned.  We will 

DEFINATELY NEED  the money for travel, food expenses, medical expenses, and especially since I don’t get paid when I don’t work. 

---------------------------------------------------------------------------------------------------------------------

Wednesday, July 14, 2010 8:53 PM, EDT 

NEWS NEWS…..FINALLY!!!!!

Sorry it has been so long since the last update, but we did not know anything until today.  Sorry that it took so long to get this out today also, I typed it all once then Kaylee HIT the keyboard and everything disappeared WITHOUT being saved, so I had to start all over!!!!! So here it is............ 

We went to UVA today and Dylan was seen by a Radiation Oncology doctor, named Bernard Schneider.  The doc reviewed all of Dylan’s records and did a small exam on him today.  Dr. Schneider, Dr. Packer, (specialist from D.C.) and Dr. Jane (surgeon), all decided to go ahead and start treating Dylan’s brain tumor with radiation.  They are going to treat him with TomoTherapy is one of the world’s most advanced radiation treatment systems for the treatment of cancerous tumors, including those of the head and neck. How It Works TomoTherapy uses a sophisticated application of radiation beamlets known as IMRT (or intensity modulated radiotherapy) that are delivered in a 360-degree pattern. As the beam rotates, it is constantly adjusted to produce a dose of radiation that’s designed to fit the exact size and shape of Dylan’s tumor, all while avoiding nearby healthy tissue. Treatment is based on a carefully customized plan that’s tailored to Dylan’s very unique tumor. Radiation is delivered painlessly and precisely to the tumor site.The TomoTherapy system provides 3-D imaging before each treatment to verify the tumor’s location, ensuring radiation hits only where it’s planned. This often results in fewer side effects, and a quicker return to normal activities than with other forms of cancer treatment. We will return to UVA on August 3rd to the radiation team and they will precisely fit and size Dylan with a mask that covers his face, head, and neck and he will wear this for every radiation treatment.  The docs will place Dylan on a machine, similar to a Cat Scan machine and with his mask on they will make unique, very precise measurements and calculations specifically for the radiation beams to enter only the tumor during radiation. They will be as precise as possible to help eliminate any damage to the surrounding brain tissues.  The goal of radiation therapy is to shrink the tumor without damaging surrounding tissue.  The  radiation therapy includes real-time imaging to ensure the docs know the exact location of the tumor and any changes in its size or location, as well as, monitoring of Dylan’s progress and making adjustment’s to his treatment plan to ensure the radiation is hitting its target properly.There are several side affects to radiation, the few that the docs told us that pertain to Dylan are:· - Fatigue/weakness· - Hair loss· - Nausea, vomiting · - Appetite loss
God has really blessed us with a caring, giving, and gracious community, family, and group of friends to help us and we would like to continue to say a very humbling thank you to every person, group, family member, church, and friend that has helped us. 

GOD BLESS to all of you and your families!!!!

If anybody has any questions or concerns please feel free to email or facebook me.  If anything else happens or changes I will send an update to let you all know.  Everyone please continue to pray for Dylan and our family, specifically that the radiation will shrink the tumor without serious side affects to our precious son!!!

God bless and we hope to see you this Saturday, 7pm, at Moyer Park in Salem for our very first fundraiser event. I know Dylan will be excited to see everybody!!!

The Prater Family 

___________________________________________________________________________________