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grammahony

Latest Update On DGS Nathan (long)

grammahony
15 years ago

Here's the latest from Nate's CarePage.

We finally got the phone call from the doctors in California late last night(Thursday). Dr Khatua said he looked at the report and feels the tumor looks no different in size and due to no change in Nate's symptom's is calling it "Stable". He also has ruled out the bleeding and says the spot is Necrosus, which is what we wanted to hear. He is very pleased with how Nate is doing on the Avastin/Irenatican and thinks staying with this treatment is the way to go. He also said he would like to see us come back in 3 months for another MRS, which will give even greater detail results because they can compare MRS to MRS. Now they are comparing Nate's new MRS to his last MRI. Dr Khatua also said this was himself looking over the scans and the radiologist would be reviewing them today and writing the report, sending a copy to Dr Thompson here in Omaha. He said he if the radiologist found anything different in his report he would call me. 'Stable' is good news in the brain tumor world, so we thank everyone for their prayer and support.

A little bit about our trip to Los Angeles: We arrived in L.A. late Friday night after our flight was delayed for 2 hours. Saturday morning we went to Rachel's school carnival and had alot of fun. In the afternoon, Nate, Jeff, Rachel and Uncle David went to a Rugby Game which Nate says puts American football to shame. He thought it was awesome. In the evening we went to Quintin's baseball game, which was a very close exciting game, but Quintin's team did end up loosing just by a point. He did score a run-way to go "Q". Sunday the dad's and kids were up around 4:30 a.m. to go on a deep sea fishing trip. The boat leaves at 6:00a.m. and comes in at 4:00. They had really nice weather, but did have a few rolling waves through the day. They hit the catch limit of 20 fish, some were red snappers(I think-I forget) around 18 inches long. We had fish on the grill that night for supper. Monday was the day for the MRS, which was at Children's Hospital of Los Angeles. I am so glad we had Melanie to get us there, as we would have had no idea where to go and the traffic was really busy. We did go a little early for all the paper work. The test was alot like his MRI machine at home only the time was around 90 minutes in the tube instead of the 30 minutes. It didn't seem to bother him since he was able to watch a movie during the test. All together I think we were at the hospital around 3 hours and everything went smooth.

Monday we made a quick trip down to Venice beach to shop a few of the vendors shops. I think this is always Nate's favorite place to visit because he finds the most craziest t-shirts to buy. Our flight left around 3:00 putting us in at a late 11:15 p.m., but the trip was very worth it.

Today Nate had treatment and we talked about all the information from our trip and Dr Thompson will also go over the reports she will be receiving to make sure everything sounds the same. We also talked about Nate starting to get a little more sick with each treatment. She has Nate going back to Zofran(1st nausea med) because you can take it every 6 hours. About half way through treatment Nate woke up feeling really sick so we moved to a back room so he could lay down. They also decided to give him some adavane(sp?) because this has shown to work with nausea and it also makes you sleep. After about 10 minutes he was back sleeping and slept till his treatment was done. When his end of fusion beeper went off I went out in the hallway to see if the nurse was coming and ran in to Dr Thompson and she mentioned that she noticed Nate has been getting more sick from treatments about the same time he stopped his steriods. She then explained that alot of times the steriods will inhance the nausea medication making it work longer/better. So her idea is with his next treatment they can just give him a small dose of steriods along with his chemo and hopefully this will be the trick. Nate did mention today going home that he did feel better then last treatment so maybe the additional adavane is helping also. It also made him sleep a couple more hours once we were home but now is up and feeling alot better.

I know this post is long, but one more thing: today is Nate's "1 year" battle day. Last May 8th, 08 was the day no parent ever wants to hear. It was very hard for a couple of months as it was a place we knew nothing about. Today the fear has been replaced with drive to fight this terrible disease. Nate has the most upbeat positive additude and as I have said from day one, watching him is the medication that keeps me going. I could go on and on about research, clinical trials, and all the information I have absorbed in the last year from constantly reading the internet and joining all the brain tumor groups that I can find, but I will save that for another post as it's getting late. I guess I just want to thank everyone for ALL the support and prayers in the last year. I have also met alot of great people through this journey. You are all the best!!!!

Take care and keep praying,

Monica

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