Thursday, August 12, 2004 12:01 AM CDT

I spent the last week in Lexington, Ky . We had the race on August 7th , it was a cool morning, perfect running weather. We had a good turn out for a first time race.
I really appreciate all the hard work the BlueGrass runners did to make this race such a success. We are going to try to repeat it next year. So we are slowly building up the fund. I did two TV interviews, talk about stress, but I think they went ok. I haven't got the nerve up yet to watch the video clips. I was able to publicize the fund,
Rhabdomyosarcoma, and also two web sites. (Saroma Foundation of America at www.curesarcoma.org and
rare-cancers.org ) So I am hoping that it will do some good , getting the word out.

Sunday, August 1, 2004 6:55 PM CDT

1st ANNUAL LIZARD ON A HOT ROCK CROSS COUNTRY RACE
AUGUST 7TH 8:00AM KENTUCKY HORSE PARK
IN MEMORY OF SURYAN ALL PROCEEDS TO
ALVEOLAR RHABDOMYOSARCOMA RESEARCH FUND

I LEAVE FOR LEXINGTON ON TUESDAY FOR TWO TV INTERVIEWS
AND THE RACE. I AM HOPING THAT WE CAN REALLY RAISE MONEY AND AWARENESS ABOUT THE NEED FOR SARCOMA RESEARCH.

STEPHEN IS REALLY MISSING SURYAN THIS WEEK. I GUESS THE HOUSE JUSTS SEEMS SO QUIET WITHOUT HIM. WE HAVE BEEN GOING ON BIKE RIDES IN THE EVENING. I HAVE BEEN RIDING SURYAN'S BIKE AND STEPHEN SURE WISHES HE WAS HERE TO GO WITH US.

I JUST FEEL LIKE SURYAN IS ALWAYS WITH ME AND HAS HIS ARMS AROUND ME AT ALL TIMES. I FEEL LIKE HE IS DIRECTING MY LIFE AND LEADING ME INTO NEW DIRECTIONS WITH THIS FUND RAISING AND PEDIACTRIC SARCOMA AWARENESS.

Tuesday, July 27, 2004 11:42 am

Lizard on a Hot Rock, August 7th, 5k in Memory of Suryan,
to raise funds for the Alveolar Rhabdomyosarcoma Cancer Research Fund at U OF Penn, 8:00am at Kentucky Horse Park.
If you want a T-shirt, please contact me with your size.
I am going up to Kentucky for the weekend to show my support. Donna & Lynn are coming too. (Rhabdo Parents)
I will be on TV, (oh my gosh) , August 6th , in Lexington, Ky. It will be a 3 1/2 minute interview , live, so no easy edits. I am praying that I keep my composure and come off looking good for the cause.

We lost Lindsay today,Age 21, another Rhabdo patient. It just makes me more determined to raise money so we can stop this cycle. My heart goes out to her family as I know how difficult the road is to walk.

We are doing ok. I feel Suryan's arms around me surrounding me with so much love. I miss his sweet smile that could light up the world. I am doing what I promised Suryan I would do , being ok and getting a life. I know he is looking down on me with a smile.

If you go to the links at the bottom of this page, you can see more pictures , buy Suryan candles and also read our Rhabdo letter. I love reading your messages.

Sunday, July 4, 2004 7:16 PM CDT

I found out today that the 5k race in memory of Suryan will August 7th in Lexington, Ky. I am trying to find out if you can sign up on-line, will post as soon as I find out. I did write the biography for Suryan for the race form. If you want T-shirts, please e-mail me with your size. I can't promise them but will try to get extras. At the moment , don't know the cost of them.

We went to a grief workshop last weekend in St Augustine.
We were glad we went and were able to see old friends from the clinic. I did discover that I was doing pretty good in the whole grief process. I still miss Suryan so much but life goes on. I can just hear him telling me "Mom get a life". One of the things that makes me so strong is Suryan's words in my head. I know that he wants me to be happy again and I am trying so hard. The tears still come but mainly when I am listening to his music, cleaning up his room or talking about him. It seems like the last 21 years were over in a flash.

Tuesday, June 22, 2004 8:14 AM CDT

Stephen & I are doing ok most days, though evenings are tough. It seems like that is when we miss him most of all ,as he was out surfing during the day but was always home in the evenings. We are going to a grief workshop in St Augustine this weekend put on by the J-Fund, also by Nemours clinic where we were treated in Jacksonville. It is going to have 25 families whose children died from Cancer. I hope it is a good experience during a very sad time. Stephen is not excited about going, basically I am dragging him with his feet kicking.

We are going to pick up Gina tomorrow and hope that she is pregnant with puppies. I guess we won't know till the end of July. I can only imagine what life with puppies is going to be like.

I found out yesterday that some cross country friends of Suryan's are putting on a race in his memory in Lexington,Ky. It should be either the last weekend of July or the first weekend in August. I will keep you posted.
I really would like to get up there for it. The funds raised should be going to the Alveolar Rhabdomyosarcoma Cancer Research Fund.

Leave a message!

Monday, June 14, 2004 9:04 AM CDT

It has been a month since Suryan died and it seems like forever and yesterday all rolled up into one. Sometimes I think he is just down on the beach surfing and will be back later. He is in so many places in our house and I find that comforting. I have been able to go through some of his things in his room, he really left me a lot of stuff to go through,though I know he got rid of a lot of things this spring. I have been able to give some of his clothes to his friends, which I am sure helps them to have a part of him. I do ok for a while and then I start missing him so much. Sometimes I get caught up in the what if's but that"s a downward spiral I don't need to go there.
Sometimes I just want something to hold on to and there is nothing but my heart.

Justin has been a life saver by keeping in contact with us and coming down every week for a few days. It keeps the house with life again. Justin & Stephen are down at the beach now surfing! Suryan would be so proud of his Dad.

We are off on a mini- vacation for the next few days to take Gina to get breed. We are hoping that it will be a success and she will be having puppies in a couple of months. They are not mine but belong to her breeder but it should be fun, I think! Please leave a message.

Tuesday, June 8, 2004 6:47 PM CDT

It is hard to update this page but I am trying to keep everyone aware of what is going on in our lives. Donna, Roe and Kristen were here for a 6 days from TN. We had a great time with them and liked having their support . They lost their son Eric, 8, in April 2003 of Rhabdo.

We were able to send $6,150.00 to Dr Barr for the Aveolar Rhabdomyosarcoma Cancer Research Fund. I hope this will be an on going fund and we will be able to add to it every year. We are hoping that we can do a Suryan Jama Memorial run in the fall. I know a few other parents who are helping by raising money in their communties. Thanks everyone for all their efforts.

I still have a lot of meltdowns when I realize that Suryan is no longer with us. I miss him so much as he was my whole life and am trying to find a life without him.
It is a not a place that I ever thought I would be at again.

Stephen and Justin (Suryan's friend) went fishing today
in the East end but weren't lucky. But it was good for Stephen to spend the time with Suryan's friend and to take the day off from work.

I have been slowing going through Suryan's room and that is so hard. I don't really know what to do with most of it.
I try to take is slow but it is over powering at times.

Monday, May 31, 2004 11:41 AM CDT

It is strange writing this journal , now that Suryan is no longer with us. I always wished that families who lost their kids would continue their web pages, but now see how hard it is to find something to write about. We went and got Suryan ashes on Friday in Jacksonville, it was a hard drive to do without him. I passed all our favorite restaurants that we stopped at along the drive, bringing back so many good memories. We went to the hospital and had a mini-memorial for the Doctors and Nurses. I showed a portion of the video of Suryan's memorial, passed out Suryan's memorial card and a memory card to return to us.
It was nice to talk to everyone and remember some of the good memories along the way. Thanks Kathy, for getting all the goodies for me. We served some fruit, cookies and cheesecake. It was a difficult drive back thinking that part of my life was over, no more drives to see friends made along the way. Though I am sure I will keep in touch.

Donna, Roe and Kristin arrived on Saturday evening for a week visit. We met her on my Rhabdo on-line list. She also lost her 8 year old son to Rhabdo and had visited us two weeks after he died in 2003. Now she was visiting us , two weeks after Suryan died a year later. Though it is nice to have someone around that you don't have to explain anything to and understands how you feel. Though I must say the second time around losing a child is much different than the first. I guess because you already know how the story goes. Also it might be because we were really grieving for Suryan for the last 30 months , as we knew the battle was a hard one to win.

Justin also is visiting us for the weekend. (Suryan's best friend) He is teaching Stephen how to surf today. He didn't do too bad for only the third time out in his lifetime. He is using Suryan's long board (9ft 6 in) and the waves are great today. Suryan would be so proud of his Dad. Suryan took Stephen out surfing that last week of his life in Cocoa Beach. He really wanted his Dad to start enjoying things in life , instead of working all the time. I think he is learning Suryan! Justin is having a hard time and it helps to continue being a part of our lives, as much for him , as for us.

Leave a message,

Monday, May 24, 2004 7:39 AM CDT

Suryan's memorial was yesterday afternoon on the beach. It was a nice sunny day with a beautiful breeze. We choose his favorite surfing spot , set up a canopy for food and drinks. Then about 25 surfers took out their boards, with his best friend taking his short board out. They all sat in a circle on their boards,bouncing on the waves , 100 yards from shore, holding hands and each took a turn saying something about Suryan. Then after every one was done, Justin threw a lei from Hawaii made of orchids into the circle. All the surfers raced back to shore. The rest of the guests stood on the shore , watching this magical moment we took to say goodbye to the most amazing person ,whom I called son. I stood and watched the lei for a few moments as it bobbed in the gulf and so missed my boy so much. There was his favorite music playing in the background, Sigur Ross and Ben Harper, the music we played as he lay dying at the hospital. We all gathered in a circle and I stood up and read some thoughts; Suryan went out of this world without pain and lived his life to the fullest. He never let cancer be who he was, he touched so many lives in the short time he was here. You go Suryan and catch the big wave. I also read a letter from Dr Barr,
trying to motivate people to get out there and raise funds for Rhabdo research. We are planning a memorial run in the fall to do just that. A few people came up and talked about how Suryan made an impact on their life, his two best friends from High School, his track coach, a few of my friends. It was a magical day for Suryan. I am sure he was looking down at me and smiling. Suryan, we miss your smiling face so much, but feel your love and realize how you changed us all to become better people.

Friday, May 21, 2004 8:01 AM CDT

My brain feels like mush. I am walking in a fog and don't know how I will survive without my sweet boy. It seems like everytime we do something, we wonder who will tell us how it works. Suryan had so much information in his head for us. The memorial is on Sunday and hope we pull it all off. It will be very spontaneous, as Suryan hated anything planned and always wanted things to just happen. We have ordered a Lei from Hawaii and it should arrive today. So will write more on Monday and let everyone know how it went. Keep us in your prayers and thoughts and we walk this road once again.

Thursday, May 13, 2004 9:18 PM CDT

We had a dream vacation in Cocoa Beach. Suryan surfed on Monday, went to the beach & out canoeing on Tuesday. He was so excited because he got to see a Manatee at our friend's dock. On Wednesday he crashed, low platelets of 3000, had a nose bleed that wouldn't stop for 9 hours till they packed it. They gave him 2 bags of Platelets & 2 bags of RBC's, and clotting factor. He had two seizures and by
2 pm , he was comatose. He had no pain and for that I am eternally grateful. He died at 7:45 am on Thursday morning. I told him I loved him so much and he replied
"Well that's obvious". The only other thing he told me when he was comatose is "Where's the manual" and " I need the information". That is so like Suryan, trying to figure it all out , even at the end. Please do not send flowers but donate money in Suryan's memory to the Rhabdomyosarcoma Research Grant. Let's cure Rhabdo in our lifetime. See above for address. We know he is surfing the big wave and watching over us. We had a discussion about death a few weeks ago and he said " don't worry mom, I will be watching over you with Ayan. ( his sister who died at age 9 years old in 1996) I am so lucky to have shared my life with two such wonderful children. "You go Suryan and catch that wave"!

Monday, May 10, 2004 5:35 PM CDT

We got out of the hospital on Sunday afternoon and made our way down to Cocoa Beach to stay with some friends. Thanks Rebecca!!!!! We are having a wonderful time down here. Suryan made it into the water this morning to enjoy the waves. The bad thing on the trip was I left Stephen's backpack in the Ronnie Mac house in Jax. So we had to hit a store for clothes and such. Then today Stephen lost the car keys in the ocean. No, we did not have a spare set. So we are having a friend overnight the keys to us. We are not going to Miami. We are having such a good time here that we will enjoy a few more days , Suryan can hit the waves again tomorrow. He will need to be back up in Jax on Thursday for more platelets. He has no wbc's but we are ignoring it and just going for the fun stuff. Leave a message

Saturday, May 8, 2004 8:59 PM CDT

We ended back at the hospital today due to low platelets.
Suryan got much needed platelets and blood and will get more in the am. They discovered his vision problems are due to a bleed around his eye. They are giving him more steriods in hopes that it will reduce the swelling. He has double vision when he looks to the left. They are tanking him up so he can go surfing tomorrow in Cocoa Beach. His immune system is still critically low but we are going to take him on a min-vacation anway. Though he will wear a mask when he is around people.. The plan is to go to Cocoa for a few days and then on to Miami. We will get back up here on Thursday for more blood. We are staying with friends in Cocoa, thanks Rebecca. It is amazing the wonderful friends we have met on this journey. Suryan is hot to hit the surf!!!!

Thursday, May 6, 2004 8:04 PM CDT

We went to Jax on Wednesday to see the doctor to adjust his meds. We found out he had a yeast infection in his mouth. They reduced some of his meds , so we are slowly getting off the nausea meds from his prior hospitalization.
So far no nausea and the pain is controlled.
He was admitted to the hospital and got a bag of platelets and 2 units of blood. Suryan is still a tired but trying to get some living of life done. He had hoped that he could
go surfing tomorrow, but we will have to see what the waves do. Please leave a message!

Tuesday, May 4, 2004 7:10 PM CDT

We are heading over to Jacksonville tomorrow to go see the doctor. Suryan needs some adjustment on his meds, reducing some of them from his prior hospitalization. He will be admitted to the hospital to get platelets and blood. Please leave a message if you stop by.

Sunday, May 2, 2004 8:54 AM CDT

It has been a busy week for us. On Wednesday , Suryan's cousin's arrived from Seattle for a visit. It was so nice to be able to enjoy some time with them. Suryan and Misha spent lots of time sharing and burning CD's. We went into Apalch and visited some sites that we hadn't seen since we moved here 8 years ago. We walked around the Ormen house which is now a museum, built in the early 1800's. Justin left on Thursday and Misha & Saundra left on Saturday. Suryan was feeling pretty bad on Saturday, so we headed up to Tally to get some much needed blood. He got 2 units of RBC's and a bag of platelets. It was a long ordeal and we didn't manage to get home till midnight. Though he feels so much better after the boost of blood. We picked up his godparents from Ohio on Saturday for a visit. His wbc's are really low so he needs to take it easy for the next few days. He only has two more days of chemo and then he gets a week break. So maybe then his immune system will kick up a little higher. We have weaned him off a lot of meds since his hospitalization ,so it makes it easier on all of us. No more setting alarms for meds in the middle of the night. Please leave a message if you stop by.

Wednesday, April 28, 2004 1:04 PM CDT

Suryan got a bag of platelets & 2 bags of blood on Monday as his counts were really low. Platelets "3" & hgb 6.2!
Justin, Suryan and I went to a movie after we finally broke him free from the hospital. Justin is leaving tomorrow and his two cousins arrived today. So it has been nice to get lots of family visits in and just hanging out at the house. Suryan is in no pain and his nausea is better. They are trying to wean him off some of his meds to see how he does. Please leave a message if you stop by.

Friday, April 23, 2004 9:20 PM CDT

We have had a busy week with my brother & his fiance here ,visiting Suryan. We had wonderful walks on the beach.
Suryan managed to go for a bike ride and hit the waves for a couple of rides. Today they drove to Walkula to see the wildlife and alligators. Suryan is feeling pretty good, no nausea or pain. He has a pretty good drug regime down now.
His friend Justin came from Colorado and they are having a good time . He will be here for a week. Monday he is going up to Tally to get blood as his counts are really low.

Wednesday, April 21, 2004 7:34 AM CDT

Suryan got out of the hospital on Monday after getting off all the IV drugs and switching to oral drugs. They are able to control his nausea and pain with the drugs. He is still tired but able to enjoy life. His uncle Bruce is here
and he is enjoying spending time with him. He went for a walk on the beach yesterday with his Bruce,Merrille,Mom and the whippets. Took his bike out and rode to the east end of the island . The bike ride helped his back pain as it stretched out his back. Tomorrow his best friend from Colorado is coming to visit for a week.

Monday, April 19, 2004 7:34 AM CDT

We are hoping to get out of the hospital today and go home.
Suryan has his nausea & pain under control enough to make the trip home. He really wants to see the beach again. His uncle is coming from Seattle today and his friend Justin comes to the island on Thursday from Colorado. We are hoping to spend some quiet time there.

Thursday, April 15, 2004 10:39 AM CDT

We have been in Jacksonville since Monday. Suryan got re-hydrated and some much needed blood. They have controled his pain with a patch and IV pain meds. Unfortunely his nausea and vomiting have not been controlled. They are trying one more drug today in hopes it will help. He is also having eye pain and light sensitivity. He wears sunglasses in a dark room. They did scans and found 3 new tumors in his spine and multiple new tumors in his lungs. They are hoping that he can go on oral vp 16 (chemo). If he can't tolerate that , then will re-group and figure out something else. Please keep Suryan in your prayers and close to your heart in this difficult journey.

Thanks Donna,Roe & Kristen for the ballons. They really brighten up the room. Leave a message!

Tuesday, April 13, 2004 9:07 AM CDT

Suryan had a rough weekend, in increasing pain and vomiting. He was unable to even take sips of water. He got some IV fluids on Sunday and we came to Jacksonville on Monday. Suryan was admitted to the hospital, given two units of blood, a bag of platelets, iv fluids, & a KUB scan(no results yet). They will try to figure out his pain,nausea, & eye problem( light sensitive, hurts to open his eyes). We are having trouble with urine output but hope that resolves with more hydration. Please keep Suryan in your prayers and close to your heart. The plan is to do more scans and a bone marrow biopsy this week . Leave a message if you stop by.

Saturday, April 10, 2004 9:44 AM CDT

We went to Jacksonville on Wednesday & Thursday to see if we could find out where Suryan's pain was coming from. They did a bunch of blood tests & MRI of the spine . They found out that Suryan needed platelets again and he had just gotten them 5 days before. So if his platelets don't start coming up by Monday, than we will go back over there
and do a bone marrow biopsy. The only other abnormal thing was his sed rate was seven times higher than normal. The results of the MRI was vague, so they want to do more scans on the 26th and another PET scan. So it will be a another couple weeks before we have it all figured out. The pain might be due to the fact of stress of the radiation, surgery and his vertebrae collapse. In the meantime his pain is the big problem. It starts in his sacrum and goes down his legs to his knees, around his ribs, gets so bad he feels like he can't breathe. The feel like it might be due to nerves running from his spine.They tried a few different pain meds with no success, so they put him on a fentanyl patch. We had to stop that due to severe nausea. So we are in the trial and error of trying to find something that will work. We have home health arranged to helps us with this and to get his monthly zometa infusion. Please leave us a message if you stop by.

Tuesday, April 6, 2004 5:22 PM CDT

We got the results from the bone scan , it showed no changes from last time. They have no idea where Suryan's pain is coming from and he seems to be getting worse.
He just aches all over epecially in a couple places on his spine. So we are heading over to Jacksonville tomorrow to see the oncologist and see if he can figure out what is going on.
Please leave a message if you stop by.

Tuesday, April 6, 2004 7:45 AM CDT

We drove to Gainesville yesterday and got a Chest x-ray and a Bone scan for Suryan. We also got to see the doctor and talk about Suryan's increasing pain. They have no idea what is causing it and will wait to see what the bone scan shows. If the bone scan shows something, they may move up his other scans to earlier in the month. In the meantime Suryan is taking pain med's. The doctor's from Gainesville are suppose to call today with the results. Please leave message for us.

Saturday, April 3, 2004 6:55 AM CST

Suryan finally got his platelets yesterday after a few mix-up the last few days. He is still feeling lousy and he will get a bone scan on Monday in Gainesville. He has back pain, hip pain and knee pain, weird bone aches. So hopefully the bone scan will give us some answers.

Suryan got a candle named after him, from an internet candle company that sells them to benfit cancer research.
All the candles are named after kids who are battling cancer. If you are interested in buying or looking the site is www.cathyscandles4kids.com. The candle named for
Suryan is Suryan's Succulent LemonGrass, we got one and it smells great.

We got our new dog on Wednesday and she is a great new addition. She is 4 years old female ,named Gina, who has the sweetest disposition. She is a little timid, but blending in with Panda and Maya. Maya is having the worst time of it, she is a bit bent out of shape that someone is taking my attention away from her. But I think she will get used to her especially after Panda is gone.

Please leave a message.

Tuesday, March 30, 2004 8:26 AM CST

Happy 21ST Birthday Suryan!!!!!

We are finished with radiation today! It is going to feel so good to head home for a break. We might have to come back later in the week for a bone scan but otherwise will be home for 24 days before the next batch of scans. Suryan's platlets are really low but hope once he finishes radiation, they will pick up.

We are picking up our new whippet tomorrow and hope she blends in with the other dogs. Panda's tumor is getting really big and is now oozing fluid out of it. I am not sure how much longer she is going to be with us. I plan to take her on lots of walks on the beach while she still has her energy.

Saturday, March 27, 2004 3:15 PM CST

We are in countdown mode for radiation now, only 3 more treatments left. Suryan is still experiencing some pain from his back but hope in the next month that it will get better. We will go down to Gainesville Sunday night and come home on Tuesday. I am really glad that we will be back home for a while. We will have a 3 week rest till Suryan has to go back for scans and doctor visits.
Tuesday is his 21st birthday!!!!!!!!!!!!!!! I can hardley believe it. It sure makes me feel old.

Monday, March 22, 2004 11:07 AM CST

Well we are in countdown mode for radiation. Suryan only has 12 more treatments or 6 more days. His back is doing better and he will get his stiches out on Friday.We went home this weekend and got our beach fix. Suryan was not able to surf yet, but visited friends and went out fishing near east pass. He was very lucky and caught 17 spanish mackeral between him and Paul. The weather was beautiful and I had some nice walks with Panda and Maya. Panda tumors are growing fast but she doesn't seem to be slowing down much yet. We are going to go get another Whippet on the 31st, to keep Maya company. She is 4 year old female and hope she blends into our family well. The breeder tells me she is a real sweetie.

Tuesday, March 16, 2004 11:35 AM CST

Suryan had his surgery on T-12 yesterday. The doctor felt it went well and he got good placement of the bone glue.He spent last night in the hospital but was able to get out today , so he could go back to radiation. He is on restrictions for the next two weeks, no surfing, no driving, no lifting and such. I guess the only part he will really hate is the no surfing. His pain at this point is being managed and his complaint is that is that his back feels tight. At least he doesn't have to wear the back brace. He has been nausated and unable to eat but hope in the next few days he will get to feeling better. Please leave us a message

Friday, March 12, 2004 5:58 PM CST

Suryan got his back brace this week. We found out that T-12
had a compression fracture. He is scheduled for surgery on Monday for Kyphx xpander, which is bone glue. The put a catheter on either side of his spine and blow up a ballon
and fill it with Kyphx and it hardens in about 10 minutes.
They might have to do this to T-8 also. They told us they would look around and see if any other vertabraes needed it also. I guess they have 3 cameras inside to look around.
After the surgery he will not need the back brace. But will need monthly infusions of Zometa to help strengthen his bones after radiation. So no surfing for Suryan this week.

Panda's tumor is growing fast. It is so hard to be away in Gainesville with her sick. I hope I get to spend some quality time with her when I get back. Suryan and I are going to try to take pictures of her this weekend.

Please leave a message if you stop by.

Wednesday, March 10, 2004 6:04 PM CST

Suryan got fitted for a back brace this week, they are worried about T-12 stability. The tumor is shrinking and as it shrinks the hole in the bone gets bigger. He will go see the spine doctor next Thursday to see about minor surgery to stabilize it with bone glue. He will probably have to wear it for a month. He is going to be finished with radiation for T-12 tomorrow and then he will only be doing T-8 for the next 11 days. I haven't heard when the new scans will be in April but we are continuting to be treated in Jacksonville. I heard the good news on Monday.

Please leave a message

Friday, March 5, 2004 8:30 AM CST

It has been a whirlwind week with scans and doctors appointments. We will be staying down in Gainesville another couple of weeks, don't know the exact time yet.
Suryan radiation field was increase yesterday to include
T-8. They will finish the lower spine sometime next week and will then only radiate the upper spine. We went to see an orthapadeic oncologist yesterday to see if he could figure out Suryan pain and he is refering us on to a spine specialist. We will go see him sometime next week. We are trying to figure out chemo and are working with MD Anderson to come up with some sort of treatment. We will have to go down there at some point. I haven't heard from St Jude's yet, but very doubtful they will have a trial for him.

Please leave a message

Tuesday, March 2, 2004 7:35 PM CST

The steriods haven't helped Suryan back so we will see what the doctors think tomorrow when we see her. He had a CAT scan today and will have a PET tomorrow. The Oncologist and the Radiation Oncologist are trying to work out Suryan's treatment plan. At the moment all I know is he will be finished with radiation on the 11th and we are going to have to do more chemo. I don't know where or when but should know something by the end of the week. So we are just laying low doing lots of reading.

Panda ( our whippet) cancer is also growing fast, we can already feel her tumor again. She has no energy and is getting so skinny. It is hard being away from her and we can't wait to get home on the weekends. I guess the steriods are really doing nothing for her.

We went out to dinner tonight at a great Asian tea house, great food and we ate way too much. It was nice to get out of the Hope House and feel normal.

Please leave a message if you stop by.

Sunday, February 29, 2004 7:34 AM CST

It was a hard week for us. Suryan hurt his back about 3 weeks ago and has been getting increasing pain. We tried
massage therapy, NSAID's,and he is now trying steriods and muscle relaxants . They haven't helped the pain so he will get a CAT scan this week. They gave him a MRI on Wednesday and found that his scan was funky. So we are waiting for the radiation oncologist to get together with the oncologist to discuss it. So we won't know anything till later this week about treatment and options.

Panda is looking mighty skinny and we are trying to feed her more . I think the steriods are just making her nervous and boosting up her metobolism.

Please leave a message if you stop by.

Saturday, February 21, 2004 8:10 AM CST

We spent the week in Gainesville and Suryan got his first week of radiation. He had no side effects , so the doctors were very pleased. He is getting a high energy proton beam
and it only takes 30 seconds on his side. We go twice a day, we usually get in and out pretty fast unless we need to see the doctors, which we do twice a week. So we have lots of time on our hands. We managed to go to two movies this week, Lost in Translation and 50 First Dates. We enjoyed both of them. Our room at the Hope House is a suite with two single beds,bathroom and a small living room. I have been quilting a lot , working on a baby quilt for my great neice and reading. Suryan has been playing his guitar and reading. So we pass the time till Friday night when we can hit the road for home. Panda seems like she is doing ok and we can reduce her steriod dose on Tuesday. She is a bit wired from the drugs. But she was mighty happy to see us along with Maya.

Saturday, February 14, 2004 7:48 AM CST

We went to Gainesville on Friday for Suryan's simulation.
We found out that the radiation has totally changed. They are not going to do IMRT as it scatters too much. So he will do the standard radiation. They changed their minds on the spine and increased the field that they will radiate. So now they will radiate T-10,11,12,L-1& 2. They decided not to radiate his right pelvis. After looking at the MRI & PET scan, they felt that it might be bone growth instead of cancer. As that area also had a negative biopsy in two places, they feel pretty safe not radiating it.
We leave on Monday for the start of the radiation. We found out that we are going to stay at Hope House. So it will be close to the cancer center as it is only about a mile away. Suryan plans to ride his bike there and I will drive the car. That way if he gets too tired he can put the bike in the car on the way home.

We found out last week that our dog Panda has cancer.
A sore appeared under her chin and after a week of antibiotics , it looked bigger. I had the vet take it off
and we had it biopsied. It came back at Mast Cell Cancer grade 3. It is a very aggresive cancer , she could die anywhere from 1 month to a year, though most dogs die within 6 months. We started her on steriods in hopes that it would slow it down. I really don't want her to get really sick while we are away. We are going to come home every weekend to check on her.When we get back , we will try to get another whippet so Maya won't feel so alone when Panda dies. It is hard to have to deal with this along with everything else.

It has rained here most of the week . I miss the sunshine.
Suryan hopes the waves get good by Sunday so he can surf before we leave.

Saturday, February 7, 2004 4:29 PM CST

We went to Gainesville on Thursday and did a tour of Hope House. It is ok but not as nice and homy like Ronnie Mac.
It has a weird policy of curfew by 9 pm , they lock the doors and you can't get in or out. No evening movies for us. We applied to get into the house and will know by the 13th if we get in, if not will get in eventually. The radiation will start on Febuary 16th and last for 5 weeks.
We will do it twice a day, 9:45am & 4:30pm. We are going to find things to amuse us, hopefully.

Suryan went surfing this week when the waves came up and the rainstorm was in effect. He got a few good rides in the cold water, thank goodness for wet suits. He is feeling good and trying to stay busy till we leave.

Please leave a message if you stop by.

Friday, January 30, 2004 9:10 AM CST

Suryan radiation has been scheduled to start on Feb 16th.We will need to go to Gainesville on the 4th & 13th for planning sessions. We don't know how long it will last yet. Somewhere between 4 - 6 weeks, Monday through Friday,it will be twice a day at 9:45am & 4:30pm. We are trying to come up with some housing options. We are going to apply at Hope house but won't know if we get in till the day before. So when we are down there next week we will tour the Hope House and try to get some other options from them.

Suryan got his new mountain bike. I will try to take a picture of him on it. He was so excited! A friend of my brothers got it for him. Thank you so much Denny!!!!

Please leave a message it you stop by.

Monday, January 26, 2004 3:11 PM CST

We found out today that Suryan's biopsy was negative.
So that means we are going to go to Gainesville,
do 6 weeks of radiation, twice a day. I am not sure yet when that will be ,as the doctors are trying to fit him into the schedule. We are hoping that we can come home on the weekends so it won't seem like such a long haul.
Please leave a message if you stop by.

Saturday, January 24, 2004 8:52 AM CST

We went to Jacksonville on Wednesday to see the doctor, get blood counts,and have Suryan's pentamadine treatment.
Thursday we spent ALLL DAY at the hosptial getting the biopsy. It took forever due to the radiologist trying to get the right scans,deciding where to do the biopsy in the hospital, finally deciding to do it in the CT Lab,getting the pathologist down there, waiting 2 hours after the biopsy to watch for bleeding, so all and all it took 11 hours. So now we wait for the results which should be sometime between Monday and Wednesday.

Suryan hasn't got his new bike yet. He is anxiously waiting for it. He is hoping that the waves kick up
and he can go surf .

Please leave a message if you stop by. We love reading them.

Monday, January 19, 2004 6:07 PM CST

Surf was up this weekend, so Suryan surfed the waves at the Cape with his friends. I loved his smiling face.
We are going to Jacksonville on Wednesday to see the doctor and then have his needle biopsy on Thursday. So maybe ,we will know something next week about where we will be going for the next treatment. Please leave a message if you stop by.

Thursday, January 15, 2004 9:08 AM CST

We found out today that they are going to try to arrange a biopsy for Suryan sometime next week. Depending on the results will tell us what direction we are going to go.
So we probably won't know anything for another week or 10 days. So we are just trying to stay positive and go on with life. The waves have been down so Suryan hasn't been able to go surfing. We are still waiting anxiously for his
new bike to come. Please leave a message if you stop by.

Monday, January 12, 2004 10:56 AM CST

I finally got the results from the Pet Scan today. There is increased uptake in T-12 and the right iliac joint.
So the radiation doc is going to make some phone calls to some rhabdo specialist and talk to his oncologist. They are going to decide if they will do local control with radiation or chemo. We probably won't know for a couple days yet. Suryan will have to quit school once again.
My heart just breaks for him and all his setbacks. He has been fighting this for 26 months and I know how tired he is about it all. But we will get our fighting gloves back on and GO FOR THE CURE!!!!Please leave us a message.

Saturday, January 10, 2004 7:30 AM CST

We went to Gainesville on Thursday for Suryan's Pet Scan.
It was a long day because they had trouble with the machine and it took 5 hours. We were suppose to get the results on Friday. I called them and his Doctor was out of town so they were going to have one of the other doc's read the report. When they went to get the report off the computer it wasn't there and they found out the radiologist had never dictated the report yet. GRRR!!!!!! So the doc tried to get the scans off the Pet Scan computer but the computer was busy doing archiving. So the story goes that we have to wait till Monday when our doc will be back in town. So it will be a long weekend waiting to see what direction our life will be heading.We are praying for dead tumors. Suryan had signed up for school on Wednesday in hopes that he could go. He was unable to go on Wednesday or Thursday due to the Pet Scan but went on Friday. He has to withdraw by Monday , so he plans to go ahead to classes and I will try to find out something in the am about the scans.

Suryan wanted to get a K-2 mountain bike to be able to ride trails with his friend up in Tallahassee. Also he was hoping to be able to ride it to classes and such. He hasn't owned a bike since he was 13 and we moved to Florida. He picked one out but it cost $$$. I contacted my brother and he contacted his friend who is a rep for the company. His friend is buying Suryan the bike and shipping it to us. Suryan was so excited and it really gave him a boost. We can't believe the generosity of some people.
It really warms my heart. Please leave a message if you stop by.

Wednesday, January 7, 2004 6:57 AM CST

We went to Gainesville on Monday to see the Radiation Doc.
Due to the holidays Suryan's scans didn't arrive till Tuesday, so we had to discuss his options without her having seen the scans.Though she did have the reports from the radiologist in Jacksonville. The decision was made to give Suryan a Pet scan on Thursday to see if the remaining tumors have any activity.Then the radiation Doc will decide if chemo , radiation or nothing will be right for Suryan. We are praying that the scans show the tumors are dead and it is just scar tissue that is showing up on the MRI. Suryan is going to register for school today in hopes that he will be able to go. School starts today but he won't be able to go to classes until we know the direction his treatment is taking. Though they hope to have a decision by Friday evening for us. Please leave a message if you stop by.

Sunday, January 4, 2004 8:26 AM CST

Suryan is doing fine but we are still in limbo with what direction he is going to go. Our radiation appointment has been moved up to Monday 5th, so we will know on Monday if Radiation is possible. If not than he will sign up for classes and go back to school at FSU. He is excited about getting back to a regular life with his friends. Please leave a message if you stop by.

Thursday, December 25, 2003 6:15 PM CST

We are home again and it sure feels good. We got home on
Christmas Eve , madly wrapping presents and getting things ready for the big night.We had a nice evening and Suryan liked the presents that Santa brought, especially the guitar pedals. We found out about his scans, stable and some decrease. They will recheck in March . The plan is to go to Gainesville on the 7th to meet with the Radiation doc and see what she thinks. If she feels that he needs radiation than will go ahead with that and if not, he will go back to school at FSU. SO we are in limbo now and really not sure which direction we are heading. Please leave a message if you stop by.

Tuesday, December 23, 2003 10:31 AM CST

We got home from Hawaii on Sunday and drove over to Jacksonville from the airport. On Monday, Suryan had an echo, CT Chest, Chest x-ray, an a Audio test. Today he had
bilateral bone marrow biopsy and bone scan. His ANC was really low 124 , so he is back to giving himself his neupogen shots. I think the chemo finally caught up with him. Tomorrow he is having a MRI of the spine and the pelvis. I am hoping that they can give us some results before Christmas. We are hoping that we can get home by 7pm , in time for some mad wrapping of the few christmas presents that I found time to buy.

We really enjoyed the weather in Hawaii, warm and no bugs.
Suryan was able to surf the waves for 5 of the days & went out fishing for 3 of them. Those waves were a bit bigger than the Florida waves he was used to but got right in there and got some good rides. I will try to post some pictures when I get home. Please leave a message if you stop by.

Wednesday, December 10, 2003 6:10 PM CST

We are off to Hawaii in the morning for 10 days of fishing and surfing. Suryan counts are a bit low but we are hoping they come up soon. We have arranged to get labs and transfusions in Hawaii, but hope his platelets come up so he can go surfing. Luckily we start the trip with fishing first. We are going to get scans on 22-23-24th in Jacksonville as soon as we get back. Please leave a message for us.

Tuesday, December 9, 2003 7:10 AM CST

Suryan counts were so low on Thursday ,especially his White blood cells, that the clinic was worried that he would end up in the hospital and have to cancel Hawaii. So we upped his neupogen shots by 50%. We got counts yesterday and he still has low counts. He is going to Tallahassee today to get two units of blood and a bag of platlets. We are hoping that his body kicks in here soon , gets his WBC higher so he will be able to go surfing when we are in Hawaii.I guess the last treatment finally caught up with his body and his bone marrow is just having a hard time recovering. We are trying to arrange labs and transfusion in Hawaii, so am a bit stressed about the whole thing. But hope it all works out .

We heard from St Jude's and they turned us down for treatment. So will talk to my doctor about arranging a visit to MD Anderson in Houston. We will probably not go there till after March sometime. Though it will all depend on his scans this month.

We leave for Hawaii 11-21st, then on to Jacksonville for scans 22-24th and than home for Christmas.

Please leave us a message .

Friday, December 5, 2003 6:48 AM CST

We got home on Monday , it felt so good to be off chemo but so very scary what the future brings. Our life is pretty much still in limbo as we don't know what is happening for future treatments. Suryan is still having his
scans on December 22,23,24th and a lot of the future depends on the results. At this moment radiation looks doubtful. The plan is to look at the scans and make a future plan based on the results. We have asked the doctor to call St Jude's and see if they will take us, but it is doubtful. If they refuse than will go to MD Anderson in Houston for a consult . We are hoping that the scans look good and Suryan can go back to school. He had counts yesterday and they were pretty low, guess all that chemo finally caught up with him. We leave in 6 days for Hawaii!!! Yes! Please leave a message

Monday, December 1, 2003 7:53 AM CST

We are done with chemo!!!!!!! Hurray!!! Suryan did pretty good the last few days and was even able to watch the FSU/UF game on Saturday. FSU won , so he was pretty happy.
We plan to leave today at around 2pm and head home. The hospital is throwing Suryan a surprise party as he won't be back here except for scans later in the month. It is very scary ending treatment but am praying things go well. We are also trying to find a doctor now as we are being treated at a Children's Hospital that will end in March when Suryan turns 21. My doctor is contacting St Jude's but we are doubtful if they will take us. We will probably go to MD Anderson in Houston. We will wait for scans , on the 22,23,24th and make our decisions based on the findings.
10 days till Hawaii!!! Please leave a message.

Saturday, November 29, 2003 7:59 AM CST

Suryan was really feeling so fatiqued on Thursday and was pretty much comatose since getting chemo on Wednesday. So I had them check his blood levels on Friday and he needed two units of blood. So yesterday we spent the day getting blood
and he perked up enough to be able to take a few bites of food, his request was fried mushrooms from the cafeteria.
We only have two more days of chemo and then we are done!!!!! We are hoping we can leave on Monday afternoon
to head home.
Please leave a message.

Thursday, November 27, 2003 12:17 AM CST

We came over yesterday to Jacksonville. Suryan got his Pentamadine treatment , labs and as we had to wait for orders, we decided to go out and have some fun. So we drove to the beach and looked at surfing wet suits. We found one that fit , so now he ia all set for surfing in the cold weather. It was an early Christmas present . Suyan got his chemo last night as he was as sick as I have ever seen him. I guess he decided to go out with a bang on his last chemo. SO after about 6 hours we finally got the vomiting to stop. He had a pretty restful time since then. So one down and 4 more to go. Please leave us a message.

Tuesday, November 25, 2003 6:42 PM CST

Suryan got counts today and they were good enough to go have chemo tomorrow. So we are off to chemo # 11 , his last one of the trial. It has been a long haul and we are both excited that it is over and a bit scared too. So Stephen will spend the holidays without us on the Island and we will be in hospital for the next 6 days. But we all have Hawaii to look forward to in 16 days and counting. Please leave us a message .

Saturday, November 22, 2003 8:28 AM CST

We drove up to Tallahassee yesterday thinking Suryan might have to get some transfusions, but his counts were much better. So now we wait till Tuesday and pray that they are good enough for chemo. If they are than we leave on Wednesday morning, 26th and spend Thanksgiving in the hospital. But we both don't mind as we just want to get the last chemo over with and get Suryan feeling better.
If not, than we will leave on December 1st for chemo. We found out yesterday that our plans to go to Hawaii are on , we leave on December 11th to spend 6 days in Kona, Hawaii . Suryan will get to Marlin fish for 3 days and then spend 3 days touring the island. Then we fly to Honolulu to spend 4 days there, so he can surf those big waves. Hunt of a Lifetime is paying for Suryan and I to go
to Hawaii and our Hotel in Kona. We are paying for Stephen to come with us and our hotel & car in Honolulu. Suryan's best friend is coming with us too and his parents are giving him the trip for Christmas. It will be great for Suryan to have a buddy to surf with as his parents try to just body surf. We are all so excited to be going! When we get home on the 21st, we will leave for Jacksonville to go
get scans. Please leave a message

Wednesday, November 19, 2003 4:43 PM CST

Suryan got counts on Monday and his platlets were pretty low, but we hoped they were on the way up so he didn't have to get a transfusion. He hates it, I think it is all the time waiting around at the hospital. Of course, last time he had a reaction, so that didn't help. Today we got counts again and platlets were lower and hemoglobin is dropping, but were are again going to tough it out till Friday and see if his body fights back. We are suppose to get chemo on Wednesday but don't know if we will make it.
The hard part for Suryan is no surfing! Please leave a message!

Monday, November 17, 2003 7:33 AM CST

Suryan is feeling good again and the muscle spasms are over. His counts were great on Thursday and he will go get some more today. He spent 3 days up in Tallahassee last week visiting friends, seeing two movies, (Elf & Matrix),
going to two concerts and being a normal person. He came home yesterday and caught some waves , though the water was a bit cold. We really need to get him a wet suit!
Please leave a message if you stop by.

Thursday, November 13, 2003 7:11 AM CST

Suryan counts were good on Monday and he is going to Tallahassee today to get counts again. He is still having the muscle spasms but they seem to be better controled with the medication this time though he gets some break through spasms. Suryan spent Tuesday on the beach with some friends from Tallahassee and is going up to see the new Matrix movie today. Our next chemo date is November 26th depending on counts. We have scheduled his scans for the week of December 15th, when he will get an Echo,CT Chest, Chest x-ray, Bone Scan,MRI of Pelvis and Spine, Audiogram and Bone Marrow Biopsy. We have moved the radiation appointment to January 7th , so he can recover from chemo and get all the scans. Please leave a message if you stop by.

Sunday, November 9, 2003 10:09 PM CST

Sorry I didn't update from the hospital. We left on Friday
for Jacksonville to get chemo #10 out of 11. It was his last chemo of cytoxan,adriamycin and tirapazamine. We were excited as the tirapazamine makes him so sick. Well this last chemo decided to make a lasting impression on us. Suryan got the most sick he has ever got from it. We had a rough night on Friday with vomiting. Then Saturday we tried to get the muscle spasms under control. They usually last 8 days and are pretty severe. We tried a new drug in hopes it would help. Well Suryan started having spasms all over his body at the same time. He ended up having a cycle of 40 minutes where his body just spasmed all over, with continous vomiting too. It was horrible to watch him in so much pain. Finally I asked for the old meds that helped some to be put back on board with the new drug too. So we tried that and it worked. So he will take the three muscle relaxants for 8 days . At least he is finally getting some relief. We decided to drive home today as we are both more comfortable at home. Suryan is feeling much better and
we are both so relieved that chemo #10 is over. One more to go on November 26th!!!!!!!! Please leave a message if you stop by.

Thursday, November 6, 2003 5:43 PM CST

Suryan got counts today and they were good enough for chemo.So we are leaving in the am to drive to Jacksonville for chemo #10 out of 11. We are almost done with chemo!
Please leave us a message.

Wednesday, November 5, 2003 12:11 AM CST

We got counts today again but they were still not good enough for chemo. So we will try again tomorrow evening, in hopes that we can get chemo on Friday. If that doesn't work than will try on Sunday evening for Monday chemo. Suryan went surfing yesterday at the Cape and the waves were fabulous. Leave us a message.

Tuesday, November 4, 2003 4:40 PM CST

Suryan got counts today but his platlets were not high enough for chemo. So we are going to get counts tomorrow and pray like crazy that they come up. If they do, then we will drive on to Tallahassee. If not, we will try again on Friday. Suryan is out surfing today at the Cape with a friend. The surf is pretty rough so it should be some awesome waves. Please leave a message if you stop by.

Sunday, November 2, 2003 7:22 AM CST

Suryan went to Tallahassee on Monday to get 3 units of blood and platlets. He had a reaction to the platlets so ended up staying up there till Wednesday. We were trying to get my car fixed so he had dropped it off but it wasn't cooperating so a friend drove him home on Wednesday. His friends showed up on Thursday to surf and party . There is a big Seafood Festival down here this weekend, so lots of people on the island. I worked the festival on Friday selling funnel cakes and apple dumplings for the civic club. Then on to selling raffle tickets for the quilt we made for the Fire Department. Suryan and his friends have spent the rest of the weekend partying hardy, late nights on the beach building bonfires and surfing during the day.
We get counts on Tuesday and hope to leave for Jacksonville on Wednesday for chemo #10 out of 11. Yes we are almost done. Please leave a message if you stop by.

Tuesday, October 28, 2003 5:51 AM CST

Suryan got to try out his new surfboard this weekend when the waves finally came to the island. Justin came down for the weekend and they had a great time surfing at Cape San Blas. On Sunday the waves came to the island and all the surfers were out at the "S" curve. Check out the picture of his surfboard on the photo page. We got counts yesterday and he needed some blood and platlets. So last night he drove to Tallahassee to stay with Justin for a few days so he could get them. So the plan is for him to go to the hospital this am and get typed and crossed. Then they will call him in the afternoon when they have it ready. He might have to stay two days to get more blood but hopefully it will perk him up. The Seafood Festival is this weekend in Apalchicola so he has friends coming down from Tallahassee for the weekend. We still hope to make it to Jacksonville on November 5th, depending on counts.
Please leave a message for us if you stop by.

Tuesday, October 21, 2003 9:10 AM CDT

We are home again after chemo #9. Suryan did pretty well this time and seemed to have more energy. It was due to the fact that his hemogoblin was high and so he felt better. We only had one time with problems with his blood pressure during chemo and we managed it with getting him up
and moving his body a bit. On the way home yesterday we stopped and visited Walkula Springs and took my friend Deborah to see the alligators. It was a beautiful day and we loved being on the boat seeing all the wildlife. Next stop was to pick up Suryan's new surfboard. It is beautiful and will upload the pictures of it soon. Please leave a message if you stop by.

Thursday, October 16, 2003 7:53 AM CDT

We are at the hospital for chemo #9 out of 11. At least we are in the down hill slide. Suryan did well last night and made it through without vomiting , he only has had about 3 of those days in the last 2 years of treatments. He is also getting an Echo, Audiogram and his pentamadine treatment this week. My friend from Seattle, Deborah is with me this week. We had tried to plan it so we would be home but with delays it didn't work out. SO she is staying at the Ronnie Mac house and will tour Jacksonville . I will try to get out of the hospital if Suryan is doing well for a few hours every day. We have more information about radiation, it will be in January most likely. They will do IMRT as it has the least potentinal for damage. We really won't know anything till December when we go see the docs. Please leave a message if you drop by.

Friday, October 10, 2003 7:47 PM CDT

Suryan feels much better after getting his blood on Tuesday. He has been busy skim boarding and jamming on his guitar. We are still planning on leaving on Wednesday if his counts are ok on Tuesday. Chemo # 9 out of 11. We heard from Radiation today, boston and calif are out.
The plan is to go down to Gainesville on December 3rd for a planning session and to start radiation around the 17th of December. As this point we don't know how long radiation will last , as it depends on what his scans look like on the 1st of December. All we know is that it will
be around 4 weeks plus or minus of twice daily radiation.
Please leave us a message.

Tuesday, October 7, 2003 5:26 AM CDT

Suryan has been feeling tired but unwilling to give into it. He went to Tallahassee yesterday , planning on taking his test for his on line class. But when he went to the clinic for counts, he need blood to boost his counts up. We had never arranged for him to get blood in Tallahassee, so after a few phone calls we had it set up for today. The problem being that Suryan needs radiated blood and they usually don't do that there. So we arranged for the blood to go get radiated and he will get 2 units of RBC's & 1 bag of platelets today. He arranged for his test to be postponed for 2 weeks till after we get back from chemo #9.

I still haven't heard anything about radiation and will try to make more phone calls today to see what they have arranged. It is so frustrating as we have been trying to sort this out since July.

We are hoping that we can leave on October 15th for chemo #9 depending on counts. Please leave a message if you stop by. GOING FOR THE CURE!!!!!!!

Friday, October 3, 2003 4:45 PM CDT

We have been home since Sunday eve and it sure is nice to be back on the Island. Suryan has felt fine a bit tired from the chemo but otherwise very busy. Yesterday he went to Tallahassee to see a movie with a friend and today he went off to celebrate his friend's birthday. We found out that California denied us for proton therapy and that means that Boston is probably out too. I will know more next week after the doctors do a conference. They are talking about us doing radiation in Gainesville now and we will probably start around the 17th of December. But that also depends on his counts and if they are any delays in his treatment. So we plug along taking it one day at a time. GOING FOR THE CURE!!!!!!

Monday, September 29, 2003 7:49 AM CDT

We are home after an eventful week at the hospital. Suryan did pretty well with his vomiting and managed to only have two bad days. We had problems with his blood pressure two nights during the etoposide infusion. Thursday night, they started the infusion at 11pm and for some reason I was wide awake. They put him on a blood pressure cuff because it came make your b/p low. So when it alarmed I went over to see what the b/p was 78/32 , so called the nurse and didn't hear anything. So I ran out into the hall and yelled for the nurse that I needed help. She came in and we took the b/p again and it was lower. Suryan was really non-responsive, so they slowed the infusion down but his b/p wouldn't come up. So they called the doc and they gave him a NS bolus but it still wouldn't come up. SO when it hit 77/27 we stopped the infusion. They had to throw away about 47 cc of chemo, which made me upset, I want all that chemo in him and destroying the cells. But there was no way with his b/p. Of course when they stopped the chemo his pressure came up again. He had no memory of it in the morning. So on Friday they started it at a slower rate hoping he would tolerate it better. He seemed ok the first half hour so they bumped it up. Again his b/p went way down so we turned the TV on hoping the noise would stimulate him. Then I sat on the bed bouncing on it, bugging him by swinging his arms around. We kept his pressure up enough to get the infusion in and of course he doesn't remember me doing it. So on Saturday they gave him 2 units of blood and Saturday night when they gave the infusion we had no problems. So I guess he just doesn't tolerate it when his Hgb is down. We have never had this problem before so it was a new experience. But we only have 3 more chemos to go. The next time we go back to Jacksonville is Oct 15th. I still have not heard from Radiation and will call on Wednesday to see if they know anything. It is driving us crazy with the waiting as it has been 5 weeks. Please leave a message if you stop by.

Wednesday, September 24, 2003 8:34 AM CDT

Suryan is here at the hospital getting round 8 out of 11.
He had a rough night vomiting 3 times before the chemo started, the smells in the hospital set him off. But he did well after he got the chemo and is not nauseated at the moment. We will be here till Sunday and then we will only have 3 more chemos to go. Yipee!!! Still haven't heard from Radiation and will call on Friday if they don't call me.
Please leave a message if you stop by.

Monday, September 22, 2003 3:20 PM CDT

Suryan counts are good today so we are off to Jacksonville in the am. This will be round 8 out of 11. He should be in the hospital till Sunday , so will keep you posted as how it goes. I still haven't heard anything from radiation and will call again if I don't hear anything in a week.

Friday, September 19, 2003 8:29 AM CDT

Well I gave in and called the radiation docs to see if they had heard anything yet, this waiting is making me crazy. They still do not know anything and they tell me they have been calling up to Boston and Calif trying to find out the status. So we still sit and wait and try to keep our anxiety down. Suryan counts came up and he went to Tallahassee for a few days to visit friends. It is hard for him now with all his friends back in school and the island so quiet. He is taking one on-line class that helps a little. He is getting counts on Monday and then we will know if we get to go to Jacksonville on Tuesday for round 8 out of 11. This time it will be I/E and we will be gone for a week. Please leave a message if you stop by.

Saturday, September 13, 2003 7:51 PM CDT

We haven't heard from radiation yet about the Proton radiation. It is so hard waiting to hear from the docs. If I don't hear anything in the next week or so will start calling and bugging them. Suryan counts are pretty low , so he is housebound till Monday when we get counts again.
He has been a trooper about it. We don't leave for chemo till the 23rd so hopefully we will miss the hurricane.

Friday, September 5, 2003 9:38 AM CDT

We went to Tallahassee on Tuesday , counts were up, so we went on to Jacksonville for round 7. It seemed to go better this time, finally got his magic formula down, less vomiting. We were able to get out of there in 3 days which is a record. This chemo was the short duration one that only lasts 24 hours. So we are back home early and missed most of the rain on the way home. Next chemo date is the 23rd, if counts are good. Only 4 more to go.I still haven't heard from radiation, but am hoping that I hear soon. Please leave a message if you stop by.

Monday, September 1, 2003 11:36 AM CDT

Suryan had a friend come from Tallahassee this weekend and he had a good time surfing at Cape San Blas. The surf was up due to the stormy weather, so they caught some great waves . We are leaving for Tallahassee tomorrow in hopes that his counts are good enough for chemo. If they are , then we will head on to Jacksonville in the afternoon, for round 7 out of 11. We still haven't heard anything about radiation. I hope to hear something in the next week.
Please leave a message if you stop by.

Friday, August 29, 2003 1:24 PM CDT

We went up to Tallahassee last night so Suryan could go to his on-line FSU orientation. He is taking a computer class this fall. We got counts but they were a little low, so we decided to stay in Tallahassee last night and see if they improved today. But it was a no go. So the plan is to go to Tallahasse on Tuesday and see if we can continue on to Jacksonville for chemo/round 7. We are bummed by the delay but happy that we get stay home for the holiday weekend.
Please leave a message if you stop by.

Saturday, August 23, 2003 7:50 PM CDT

We got the results from the bone scan & MRI's. The bone scan & MRI of the pelvis showed no changes since March.
The spine showed no enhancement at T-10,11,12 & L-1, so that is a good sign. I guess there was just enhancement at L-2 &3. We are waiting for news from radiation about California or Mass, but it will a few weeks till we hear anything. We are leaving on Thursday to go to Tallahassee so Suryan can go to orientation for his on-line computer class. Then on to Jacksonville on Friday for chemo, round 7 out of 11, if counts are good. He is kind of bummed about spending labor day in the hospital but at least we will get it over with and stay on schedule. He is feeling ok, his platelets are really low but hope they kick in soon.

Wednesday, August 20, 2003 8:42 PM CDT

Sorry I have not written in a while. Our house got hit by lightening and it has been a long process trying to get the computer up and running. We still don't have it fixed quite yet but got Suryan's computer working now . We got home from Jacksonville on the 13th from round 6. It went pretty good and Suryan seemed to tolerate it better than usual. He ended up getting a couple units of blood as he was pretty anemic. We went back to Jacksonville on the 18th for scans and are waiting on pins and needles to find out the results. I am hoping we here something tomorrow. I do know the chest x-ray was fine. So hopefully tomorrow I will hear about the MRI's. I did hear from the radiation doc and they are going to try to get Suryan into Proton Radiation. There are two places in the country that have it, Boston and Loma Linda, Calif. They are applying to both places in hopes that one of them will take him. They will review the case and then see if they have a time slot for him. It will be a few weeks before we hear the results of that. Please leave a message if you stop by.

Tuesday, August 12, 2003 10:27 AM CDT

We are at the hospital for round 6 out of 11. So far Suryan
is doing a little bit better than usual. He had his best day with chemo yesterday and was awake for most of the day.
He managed to hold some pizza down after I made a pizza run to Pizza Hut for some stuffed crust that he was craving.
We plan to go home tomorrow . We still haven't heard anything from the radiation doc and will call her on Thursday if I haven't heard from her by then.

Thursday, August 7, 2003 3:46 PM CDT

We are leaving in the morning for Jacksonville and round 6 out of 11. We will be there for the next 6 days. We went to Gainesville yesterday and met with the radiation doc. She is coming up with a plan for radiation and will call us next week to confirm her plans. At the moment she is leaning towards sending us to Boston for Proton Radiation in December when Suryan finishes chemo. Proton Radiation is able to give a higher dose of radiation while significantly reducing damage to healthy tissue. So we should know sometime next week about that.

Thursday, July 31, 2003 8:40 AM CDT

We are going to see the radiation doctor in Gainesville on August 6th for our second opinion. They called yesterday and moved up our appointment as she will be back in town for a few days between conferences. They are still considering finding a way to do radiation in trial or the other option is to wait until December when the trial ends.
We should know more after next week when we met here and talk about the options. Suryan is feeling ok , counts are low because the chemo he got hits him pretty hard. Our next chemo date is August 8th in Jax. Please leave a message if you stop by.

Friday, July 25, 2003 11:45 AM CDT

We are back home now after finishing round 5. We are almost half way through the treatment, not that we are counting or anything. We go back on August 8th for round 6, for a week at the hospital.Suryan has scans scheduled for August 18th and meeting with a radiation doctor on August 20th for a second opinion. He is feeling fine now and we are hoping the counts bounce back quickly so we stay on schedule. The only hard part is when his counts are too low for him to go surfing, which is the problem now. But hopefully they will come up by Monday. Please leave a message if you stop by.

Wednesday, July 23, 2003 8:41 AM CDT

Well they finally found the magic formula to keep Suryan from being so sick. He was doing do much better last night and was able to eat dinner for the first time in 5 days. He has lost 10 pounds and so we were getting pretty worried about him. He was sitting up in bed yesterday and was able to watch some TV and had a big smile on his face. We are planning on going home today for 2 weeks. Yipee!!!

Monday, July 21, 2003 10:18 AM CDT

We came over to Jacksonville on Friday and we are able to start chemo.He has been pretty tired and has been sleeping most of the time. He hasn't been able to hold anything in his stomach and had trouble with vomiting during chemo last night. We only have two more nights of chemo and should head home on Wednesday. Please leave a message if you stop by the site.

Tuesday, July 15, 2003 7:43 PM CDT

We went to Jacksonville today in hope that his counts had come up enough to get chemo. They only needed to come up a little , so we didn't think it would be a problem. We got there and got them done and they had dropped a whole lot. So we came on home and started neupogen again and will try again on Friday. We will go up to the Tallahassee lab and if they are good enough then we will go on to Jacksonville, otherwise we will come on home. So we are praying for good counts. Suryan was pretty disappointed about it all. Delays are really hard on him.

Tuesday, July 15, 2003 4:21 AM CDT

Suryan counts were still not good enough yesterday for chemo. But we are hoping that they will be ok today, so we are going on to Jax this am. They will do counts today at the clinic and hopfully we will do 5 days of chemo at the hospital.

Sunday, July 13, 2003 12:44 AM CDT

We are not going to leave on Monday for Jacksonville as Suryan's counts were not high enough. The good part was that they were high enough for him to go surfing today, as the waves have been nice with the Tropical Storm out in the Gulf. We will try tomorrow and see how they are as they weren't too far off, so we are hoping to be able to go Tuesday or Wednesday. He will be in the hospital for 6 days this time getting I/E.

Sunday, July 6, 2003 4:59 PM CDT

Suryan is doing well and his counts have been great.He is at the beach today , hanging with his friends. It has rained here for the last 2 weeks and I am begining to feel like I live in a rain forest or a swamp. I think we all have began to have cabin fever but the sun is poking through today so I am hoping that is a sign for a change.
We plan to go get round 5 on the 14th, that will be Etopside & Ifosomide for 5 straight days, so should be in the hospital 6 days if things go well. Only 7 more rounds to go !!!!

Saturday, June 28, 2003 7:22 AM CDT

We came home last night from the hospital. Suryan still feels pretty bad and it was a rough go this time. He had lots of nausea & vomiting , that seemed to last longer . He has had quite a bit of muscle spasm that are causing him a lot of pain. We are hoping they will be gone in the next few days, as they usually last about 8 days. His left shoulder was really aching and they took an x-ray but found nothing on it. So we are going to just watch it and see how it does. They think it might be just chemo related. I met with the radiologist and confirmed that radiation is out during treatment. We are sending his scans to another radiation doc for a second opinion about radiation after the trial.

Thursday, June 26, 2003 8:43 AM CDT

We have been at the hospital since Tuesday and it is going pretty much the same as usual. He has been sleeping , vomiting and having muscle spasms, unable to eat or drink anything yet. I am hoping that by tomorrow he can come up for air and start eating. I am meeting with the radiologist this am to discuss his scans and should know more after that meeting. We are also sending his scans to Atlanta for a second opinion for radiation though in reality that should take about a month.

Monday, June 23, 2003 5:04 PM CDT

Suryan's counts were good today, so we are off to Jacksonville in the am for round 4. So we are both pretty happy that his counts rebounded so fast and it was only a one day delay.

Suryan got awarded another scholarship, this one from the American Cancer Society and it should be good till he finishes school. So that will really help him. He can use it when he goes back either spring or summer semester.

Please leave a message for us if you stop by and read this.

Sunday, June 22, 2003 6:48 PM CDT

We went and got counts today and Suryan's weren't high enough to get chemo tomorrow. So we will wait till Monday or Tuesday and get them drawn again and pray we can go to Jacksonville later in the week. Suryan is feeling fine and was a bit disappointed about his counts. We like to stay on schedule as the treatment is long enough as it is. I finished Suryan's quilt yesterday and anyone who wants a picture of it, just e-mail me and I will send it to you.
I still don't know the status of the ammended scan reports or have talked to the radiologist but that should all be worked out this week. Will keep you posted

Sunday, June 8, 2003 8:57 AM CDT

We are home again after spending 6 days in the hospital getting chemo. It went better and Suryan wasn't as sick with the I/E chemo. We found a drug combination that helped with the nausea so things went pretty well. I met with the Radiation Doc's and Suryan won't be able to get radiation during the trial due to conflicts with the wording of the trial. Since we don't want to quit the trial, we will look into radiation at the end of treatment in December. It feels great to be home for two weeks.

Sunday, June 8, 2003 8:49 AM CDT

We are home again after spending 6 days in the hospital,it feels wonderful to be home again. Suryan tolerated the last chemo much better than the previous drugs. We found a drug combination that would work that really helped his nausea.
I talked to the Radiation Doc and he won't be doing radiation while in trial, due to conflicts with the trial.
So the plan is to radiate after the trial is done, which will be in December.

Thursday, June 5, 2003 8:52 AM CDT

We have been in the hospital since Monday, and we have had some bad days and good days. Monday and Wednesday we made it 24 hours without vomiting so we were really happy. SO I hope it continues, Tuesday wasn't good but I am hoping we are on the right track at the moment. We found out more information on his scans, spine is stable, R hip tumor is smaller, L hip tumor is stable, and pelvic tumor has decreased by 50 %. So that is very GOOD NEWS!!!! So we continue on with this treatment for the next 6 months. I meet with the Radiation Doctor today to discuss his radiation options. Suryan was well enough last night to even watch a movie with me. We hope to be home on Saturday, if he continues to tolerate this chemo.

Sunday, June 1, 2003 6:20 PM CDT

We are leaving for Jacksonville in the am for a week of chemo. This is a new kind of chemo for Suryan which he will get in the hospital over 5 days. We are hoping that we will be back home sometime over the weekend. Suryan is a bit anxious over this new regiment and hoping he doesn't get as sick. I am bringing lots of books and my quilt to work on, to help past the time.

Saturday, May 31, 2003 6:40 AM CDT

We got home Thursday night after being Jax for 3 days.
It was pretty stressful waiting for results of the scans.
The bone scan was stable which means nothing new showed up.
The MRI of his spine and pelvis also were stable, so that means we will continue the treatment plan we are on for the next 7 months. We met with the radiation doctor to discuss radiation ,but don't know anything yet as they are comparing scans with where he was radiated on his Left hip last year. We meet again with him on Thursday to discuss his findings. So the plan is to get counts on Sunday and if they are good,then drive to Jax on Monday am. This time Suryan will get two new drugs in the hospital for 5 days .
I am not sure how long we will be there , it all depends on how sick this new chemo makes him.

Suryan is feeling good at the moment and went to the beach yesterday with a friend.

Sunday, May 25, 2003 9:02 PM CDT

We are leaving tomorrow for Jax to get Bone Scans,Echo, Audio test, MRI of Pelvis & Spine, meet with the Acupuncturist & the Radiation Doctor. I am hoping we get the results of the scans by Friday, but it will most likely be next week. I am not sure if Suryan's counts will be high enough for chemo on the 3rd, so we will have to wait and see. Suryan is doing ok at the moment. His spirts are pretty good and that helps. Though we are all pretty stressed about getting the scan results.

Friday, May 16, 2003 6:58 AM CDT

We arrived home last night and it sure felt good. It was a rough ride this time and Suryan had a hard time with Nausea and Vomiting. It seemed nothing worked to stop it and the Doctors were pretty frustrated. We are going to try to go see an Acupuncturist before chemo next time , in hopes that it will help. We did try it in 2002 during chemo and didn't have much success but we are trying a different Acupuncturist this time. Suryan is feeling ok now, just very worn out. We don't have to go back to Jacksonville till the 27 & 28th for scans.

Wednesday, May 14, 2003 12:10 AM CDT

We arrived at the hospital at 1pm on Monday to do round 2 of Suryan's chemo. It has been rough ride with many bouts of nausea and vomiting. The chemo is finished and as soon as we can get his vomiting under control , we can go home.
They are trying a new drug today so am praying it works.
We even put seasick bands on his wrist to see if that would help, the doctors and I were ready to try anything.

Sunday, May 11, 2003 2:13 PM CDT

We got counts this morning and Suryan counts were up enough to get chemo tomorrow. So we will leave in the early am to drive to Jacksonville for round 2. It was a nice Mother's Day present for me. At least this time they won't have to reduce his chemo. Suryan is feeling good and is spending the day on the beach with some friends who came down from Tallahassee.

Friday, May 9, 2003 7:57 AM CDT

We drove to Jacksonville on Wednesday to go to the Ben Harper concert with Suryan. It was an awesome concert and
loved the fact that Suryan took his parents with him.Though I have to admit there weren't many people there our age. We had planned to get chemo on Thursday but Suryan's counts were still too low. This came as a total shock to us as the last time we got counts they weren't too bad. So we drove home and the plan is to get counts again on Sunday. If the counts are ok then we will drive over Monday morning and get chemo. If they are not good , then will wait till later to do chemo at a reduced dose. So we are praying for his counts to come bouncing up.

Suryan got a new acoustic guitar yesterday, when we stopped at the music store to look at them. Suryan wanted a guitar that he could take to the hospital with him, so we loaned him the money and he is going to try to work it off with his Dad this summer.

Friday, May 2, 2003 5:23 PM CDT

We went up to Tallahassee today and moved Suryan out of his apartment. Thankfully a friend drove his car and trailer up there to help us, so it went pretty smooth. We left Suryan there to finish his last final tonight.We are greatly relieved that he was able to finish the semester and doesn't have that hanging over his head. He is planning on partying with his friends down here tomorrow and has invited his FSU buddies to come on down to the beach. It is a end of the year party and hopefully the weather will cooperate. On Wednesday we are leaving for Jacksonville to see a Ben Harper concert, a favorite of Suryan and mine. Then on Thursday we will start round 2 of chemo.

Friday, April 25, 2003 8:58 AM CDT

Suryan is feeling fine now expect for really low blood counts.So he needs to be careful about infection. I am hoping that they start to come up by next week. We are a bit worried about him going to school and being around all those people but hope it manages it ok without getting sick. He only has 3 more finals and then he will be all done . We are planning on moving him out of his apartment and back home next weekend.

Tuesday, April 22, 2003 5:15 PM CDT

Suryan is feeling better as the muscle spasm's are decreasing. His counts on Monday were pretty good and we are waiting to see how they are on Thursday, when they should bottom out. He has two finals this week and three next week, so he is pretty stressed trying to finish up school. We are so proud of his gritt and determination to finish his classes. We are scheduled for more chemo on May 8th in Jacksonville.

Friday, April 18, 2003 9:02 PM CDT

I forgot to tell you that we found out Suryan's bone marrow biopsy was negative! Good news finally! Suryan is still feeling pretty bad, lots of muscle spasms, fatigue and he has been unable to eat hardly anything.The doctor gave him something tonight for the muscle spasms that we hope will help him get some much needed sleep.

Thursday, April 17, 2003 4:55 PM CDT

We started chemo finally!!! It was a rough go with many side effects , but hopefully the chemo is doing its work on the cancer cells. We checked out on Thursday am , as Suryan was determined to get to classes today. He didn't feel very well but didn't want to miss anymore time. I really admire all his drive to finish this semester. Now he has 3 weeks off till the next round of chemo . I hope his counts do ok.

Monday, April 14, 2003 2:49 PM CDT

I am leaving for Jacksonville in the morning, we have an appointment with the doctor at the clinic and then Suryan will be put in the hospital for Chemo. His tumor biopsy came back as Rhabdo, so he was entered into the Children's Oncology Trial. They are fed-Xing the experimental drug to the hospital , so everything should be in place by tomorrow.
I will be so relieved to get the chemo in him and have it start working on shrinking his tumors. The plan is to stay over there till Suryan recovers from the chemo, should be able to come home by Thursday or Friday. If anyway wants to contact us , call my cell phone 850-899-3111.

Thursday, April 10, 2003 8:28 PM CDT

Suryan had his tumor biopsy today and he is pretty sore.
We are going to have the Echo, Audio test and Bone Marrow biopsy tomorrow. The plan is to go home Friday afternoon
and have the weekend off and come back on Tuesday for Chemo.
The reason we can't have the chemo right away is because , we need the biopsy information before we can register on the clinical trial. We need to be on the clinical trial before they will fed-X us one of the drugs that is not released yet. I found out the results of the scans from Friday. We had an MRI of the spine & L foot, his L foot has no tumors in it, which is great news. The spine showed some
activity on T-10,11,& 12. I haven't read the reports yet but that is what the nurse told me. I am hoping to get the report next week. So it looks like radiation will be to the spine,R hip, pelvis and maybe L hip too. But that won't be till sometime in August. Suryan amazes me with his attitude and continues to want to finish school. So he will be in classes on Monday and maybe later in the week depending on how he feels. We are just taking it one day at a time! Tonight we managed to go out to Chili's for a tuna burger as the poor kid was starving as he hadn't eaten all day. Then Mom took him shopping to get a new pair of flip-flops.

Wednesday, April 9, 2003 2:15 PM CDT

I still don't know the results of the scans on Friday.
The waiting is the hard part and most frustrating.
Suryan got a CT Pelvis and Chest done today, then went
back to school this afternoon. He didn't want to miss anymore classes than he had too. He is really determined to finish the semester. Tomorrow we are going back to Jacksonville for a biopsy of his tumor, Friday he is having an Echo, Audio test, Chest X-ray and bone marrow biopsy. Chemo is still up in the air as we don't know if they will let him do it before the biopsy results are in. So we will find out on Friday if we need the results ,if so, then we will start chemo sometime next week.

Tuesday, April 8, 2003 5:54 AM CDT

I heard from the clinic yesterday and they have a bone marrow biopsy scheduled for Thursday, Friday he is having
an Audio test, Echo, CT Chest,& Bone Scan. We are waiting for word on when they can schedule his biopsy of his tumor, they are going to try to do a needle biopsy in radiology.
I still have no word on his scans they took on Friday and the waiting is driving me crazy. I talked to Suryan last night and he is arranging with his teachers on how to finish his classes. He only has 3 more weeks of school and he wants to get full credit. He seemed more postive about treatment and life. He understands the need to move fast on these tumors to get rid of them once and for all. So we are praying for a MIRACLE!!!!

Monday, April 7, 2003 5:39 AM CDT

Suryan has decided on doing the Children's Oncolgy Group trial. It is a tough treatment with very agressive drugs.
The doctor warned us that they felt Suryan would probably be in the hospital most of the 7 months of treatment.
This trial is testing the effectiveness of the drug tirapazamine on relapsed Rhabdo.The other drugs are pretty standard for relapse. He will be on a 3 week cycle of alternating drugs of cytoxan, doxorubcin, tirapazimine and ifosfamide & etopaside. The first combo will take about 3 days in the hospital and the second will be a 6 day hospital stay. Then we will wait 3 weeks for his counts to recover and go back at it again. They warned us that he will have many more blood tranfusions and nutropenic fevers. But Suryan breezed through a rough treatment last time so I am hoping that he surprises the doctors again. Last time he had bone marrow of Iron and hope that continues for him. He is a stubborn willful kid, so I am hoping his fighting spirt will kick into play here. We are waiting for word from the clinic and when the tests will be arranged this week and as soon as we have those done , then we can start chemo. Radiation will be added to the treatment in the 16th week depending on tumor placement and size. He can't get radiation where he has already been radiated but can get it at any new tumor site.
Suryan is having a hard time adjusting to his life changes
as anyone would. Please pray for him and a miracle.

Saturday, April 5, 2003 6:47 AM CST

We went up to Tallahasee to see Suryan on Thursday and to tell him that his cancer was back. I have known for 10 days
and didn't want him told till after his 20th birthday. He was pretty shocked as he had no clue. He took it pretty well and thanked me for not telling him sooner and ruining his birthday. He was disapointing once again about quitting school but told me he had already done it once and knew the program now. Last November when he quit school 2 weeks before classes ended, he was able to finish all his classes and get complete credit. Friday we drove to Jacksonville to meet with the doctors. On the way there Suryan was telling me the benfits of chemo, no skin breakouts, no washing of hair, no shaving which he thinks is a real drag. He is so amazing finding postive things in the midst of this storm.
At the doctors we found out that Suryan's tumor was not embryonal as Shand's had diagnosied but Alveolar. They knew last year but through some communication problem, we were never told. The treatments are the same , the only difference is it is much harder to cure. We discussed two clinical trials that Suryan qualified for and will probably choose the COG treatment. The plan is to go back next week
and get an ECHO,Bone scan,hearing test, bone marrow biopsy,&
biopsy of tumor.When that is done, we will be able to start chemo and radiation will follow at the 16 week. We still need to discuss the radiation after all his scans are in
down the road. Suryan had an MRI of his spine and foot to see if there were any tumors present in those areas. At the moment we know of 3 tumors, one 5cm tumor in his right hip,
2mm tumor in his left hip and a large pelvic tumor. Surgery is not an option for us as they are too large and attached to the bone.We were so shell shocked that the three of us didn't stay a word all the way home. I am trying to stay strong & postive for Suryan. It was sad when we dropped him off at his apartment knowing that after this weekend, his life was going to change again. Please pray for a MIRACLE for us.

Sunday, March 30, 2003 5:44 PM CST

Today is Suryan's 20 birthday! Last year at this time, I wasn't sure if he was going to make it. But he is stubborn and that helped him through his journey. We are devasted about the return of the Rhabdo. I wish there was a way , I could change places with Suryan. We plan to go see Dr Sandler on Friday to see about treatment options and have an MRI of his spine and left foot. The MRI of his pelvis, showed three new tumors , one 2cm tumor on his right hip, 5 cm tumor on his left hip and a large tumor in his pelvis. Please continue to pray for Suryan and a miracle cure.

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