History

Journal History

Wednesday, April 21, 2004 3:43 PM CDT

Well, it has been ages since I last updated..... I apologize!

Jason is doing great! He is just about to finish the second grade, where he has maintained an "A" average in ALL subjects!

He had his last scans, ever, in December. They were all clear, so now we are down to 4 month visits. May 2nd will be three years of remission, so you all know what that means.... another trip to Disney to celebrate!

We are moving at the end of the school year, and while we are a bit sad, we look forward to being back in Charleston. Even if it is only for a year....

Thanks everyone!

Charon

Tuesday, September 23, 2003 8:00 PM CDT

Jason is doing great! Just this past Saturday he was invited to participate in the half-time show at the USC Gamecocks game vs. UA at Birmingham! (We stomped them 42-10!!) Jason had a lot of fun in the half-time show, but he wished it had lasted a little while longer, of course. He enjoyed the football game so much that we have decided to get him a ticket to the rest of the years home games so that he can go with us.

He is such a little boy!!! It is great to see him normal again. Most days the whole ordeal doesn't even enter our minds. This is what our dreams were made of. Thanks to you all for the wonderful support and prayers!

Wednesday, August 27, 2003 6:19 AM CDT

Back to school!!!

Jason started second grade two weeks ago, Can you believe it? He is doing great and making new friends. He loves his new teacher. Even more shocking though is that now, little sister Cami, is in kindergarten.

Jason is a wonderful big brother to Jocelyn. He can't seem to get enough of her at times. Just wait until she starts getting into his things!

Jason's last scans were August 11th and they came back clean and clear! We were told only one more set of scans in December, and the rest will be x-rays. Cancer is getting farther and farther out of our minds, thank God.

On Monday, last week, the USC Gamecock football team had the kids from Children's Chance out to watch a practice and eat dinner with them. It was once again a wonderful and fun event. Daniel Weaver, our kicker sat with us, along with Jappy Oliver, a new defensive end coach that just arrived from the Air Force Academy. Jason and Jappy took to each other tight away, and Jappy ended up asking Jason for his autograph! The new Children's Chance newsletters had just been printed and the feature article was on my little man, so everyone there thought that was pretty neat. You can visit Children's Chance at www.childrenschance.org They have quite a few pics of Jason and Cami on their site! And if you click "View Movie" you can see a very bald little Jason in the beginning of the video.

Thursday, May 1, 2003 8:43 PM CDT

Wow! I can't believe it has been 6 months since I last updated. Things with Jason are going very well. He had scans in April that came back clear, thank God!

First grade is coming to an end, he will be done at the end of May. Little league is going strong and so is soccer. You would never know this little boy was in surgery two years ago to remove half of his left shoulder blade. That was May 2, 2001. Here we are now, two years of remission. I can't believe how far we have made it. Jason is a true hero. Tomorrow we will go to the local Relay for Life and he will walk the survivor's lap. He has no idea that even though he is the smallest person on the track, he is the biggest hero I have ever known.

In a few days we will take our annual trip to Disney World. The first was on his Make-A-Wish trip two years ago. That was a very bittersweet trip. So many emotions. Last year we went to celebrate the end of treatments. This year we will celebrate two years of remission, a point where the chances of a rhabdo recurrance greatly drop. We know we are not out of the woods yet, but if we look closely, we can see the field of flowers just beyond the forest's edge.....

Much love,
Charon

Friday, October 18, 2002 at 09:18 PM (CDT)

Jason continues to do great, in all things!! He is currently in his third year of soccer and loving it! He makes a great goalie. He has also joined Cub Scouts this year and is really enjoying getting in on some "boy" activities. They are going to visit the local fire dept. next week and he is looking forward to that. He is still doing great in school. In addition to the accelerated math program, his teacher also asked our permission to take him out of class about once a week to go with another teacher and do more challenging work, reading, writing, etc. Needless to say we are extremely proud of him!

One more month until his new little sister is expected to be here! He is looking forward to playing with her and taking care of her (except diapers, and he makes sure we know that, LOL). He seems to be under the impression that when she gets here she will be ready to play right away, he is very sweet when he talks about her.

The rest of us are doing great, also. Cami is working in workbooks getting ready for kindergarten next year. I can't believe how fast time goes by. Big Jason and I are still in school and it is going pretty smooth. We stay constantly busy, between Jason's activities, and Cami's dance, we hardly have time to do homework, but somehow we are both pulling off high marks. Hopefully we don't run out of stamina before graduation...

Take care,
Charon

Friday, September 20, 2002 at 11:45 AM (CDT)

Well, it has been forever since I updated.

Jason is doing great!! He loves first grade and has been placed in an accelerated math program already! (This is the same kid who was supposed to have learning delays thanks to the chemo...) He has only missed one day of school so far, and that was to go to the hospital for his CT scan and his MRI last week, both came back clear. Or as Dr. Kevin put it, "They are a thing of beauty." Just the words we wanted to hear!

We still have 2 more months until Jocelyn gets here, and we are all starting to get impatient.

Talk to you soon, Hope everyone is doing well!!

Charon

Tuesday, July 16, 2002 at 04:10 PM (CDT)

Today Jason saw all of his doctors and had a chest x-ray. Everything looks great!

We started with Dr. Eady who felt nothing in his shoulder area (Yea!), and was happy with the muscle strength Jason has gained on his shouler. Those push-ups are paying off!

We had a while before our appointment at the Children's Cancer Clinic, so we went to the fifth floor to visit the nurses. That was where all of Jason's inpatient chemotherapy treatments were given. Needless to say, they were all shocked at his energy level and his size. He has been growing like a weed lately! They also thought he looked handsome with all of his hair back on his head.

Next was the x-ray and Dr. Kevin, always a blast! Again, Dr. Kevin did not feel anything abnormal on Jason's shoulder, nor in the surrounding lymph nodes. All very good signs. Every month we go for a visit, we leave with lowered odds for recurrence.

We have also found out since the last post, that come November Jason will be the big brother to two little sisters. Both Jason and Cami got to come with us to the ultrasound and they were in the room when the doctor said he "thought" it was a girl. Jason jumped all over that statement and started yelling/chanting "It's a girl! It's a girl!" It was cute, Jason was very excited. He has even told us that he wants to be there when she is born. (Not sure if he thoroughly understands what he is asking for there, lol.)

Take care everyone, and know that as long as there are no new entries to this page that Jason is doing great!

Camp Kemo is the week of July 22-27. This is his week long overnight stay with all of his doctors and nurses, with no contact from mom or dad. He had a great time last year and can't wait to go back!

Charon

Sunday, June 02, 2002 at 10:38 AM (CDT)

Finally up dating after the trip to Florida. The kids had a blast. It was a little more fun than last year, because Cami was tall enough to ride most of the rides. (Except Space Mountain, which Jason hates anyways.) The first day at the Magic Kingdom, we stayed until the parade at 11pm, we had to wake Cami up so she could watch it. Then Sunday at Epcot, it rained all morning. Thankfully it dried out some after lunch so we could get a couple of rides in on Test Track. The sun never came back out and we were freezing by the time the sun went down! Monday was lunch with Pooh and the gang. Tuesday was Universal, that was fun. The kids got to meet SpongeBob and watch Animal Planet Live! Wednesday was Animal Kingdom and breakfast with Mickey and his group. Thursday we went to MGM. That was great because the kids got to see Disney Playhouse Live! It wa so much fun to watch their faces as their favorite characters came to life on stage. We stayed for Fantasmic at 9pm, and then it was back to the hotel to get ready for the drive home. Over the weekend the got to see their cousins in Atlanta, so thaey really enjoyed that as well.

Monday Jason went back to school and the finished up on Thursday. Jason has graduated from kindergarten!! He is very proud to be a first-grader. We haven't told him about homework or spelling tests yet, that will come.

Everything else is going pretty well. Big Jason goes back to school tomorrow, but I won't start back until after the 4th of July.

Take care everyone!

Sunday, May 12, 2002 at 07:40 PM (CDT)

Only four more days to go, and Jason and Cami are about to bust with excitement...Watch out Disney World, they are coming! This is our way of telling Jason what a great job he did, putting up with all of his chemo, surgeries, radiation, and shots at home, too. There really isn't anything we can give him that is worth everything he has invested, but we figured this might come close enough. And it is fitting, he has come full circle since last August when he went on his Make-A-Wish trip to Disney. We won't be able to stay at the village, but they will let us on for a day visit. We will be able to take him back for ice cream and to find his star on the ceiling in the Castle of Miracles.

Not much else is going on here. Today was the first day we all got into the big pool together. We had a picture perfect, lazy Mother's Day. We swam all afternoon, and then we met LaLa for dinner. Hope you all were able to enjoy the same luxury. Take care and the next update should have pictures from our upcoming trip.

Charon

Thursday, May 02, 2002 at 06:23 AM (CDT)

You can tell since we haven't updated lately that we have all been very busy! Jason included! Can you believe he only has one month left of kindergarten? This year has gone by so fast, even with all of his "issues".

On Monday, Jason had another CT scan and an MRI. We are very happy to report that both of those came back CLEAR!!! He is now almost 5 months off of chemo, and one year post surgery. May 2, 2001, the day of his surgery, was the last time any known cancer cells were in Jason's body. So we are one year into remission!!

Jason is now missing his two front teeth, so he looks pretty cute!! (I am adding ne pics today also.) Also, Jason has a new surprise for everyone, but you have to check out the picture page to find out about it....

Take care everyone, and remember, no news is good news!!

Charon, Jason, Jason, Jr., and Cami

Friday February 22, 2002 4:15 PM CST

Things have definately settled down around here. We are almost lost without our twice weekly trips to see the doctors. We are down to once a month, and that is where we will stay for 12-18 months. His next appointment is March 6, for a doctor check-up and a blood count. The counts done in Feb. were alright, but still a little on the low side, so hopefully by now he has recovered quite a bit more. He will also have an x-ray of his chest to check for any spots on his lungs. We have never seen any there, but this is apparently where rhabdo likes to come back, in addition to the original tumor site. His next MRI and CT scans will be in early April, so those are the ones we are more worried about. They will show more detail than the x-ray.

He is doing great though! He is starting to get some pretty healthy fuzz on the top of his head and it is slowly catching up on the sides and on the back. I added some new pictures of him so you can all see his progress. We are very optimistic about the furture and so is he!

Love,
Charon & Jason, Jason & Cami

Friday January 25, 2002 2:55 PM CST

Jason has made through yet another major hurdle. His port is out and we got to bring it home with us! It actually has a very small area for the needle to enter and it is made out of titanium. Not at all what we expected it to look like. He has a couple of doctors appointments in about 2 weeks, and nothing much going on until then.
Hope everyone is doing well,
Charon

Wednesday January 16, 2002 12:58 AM CST

Hello everyone!!

I just want to say thank you to everyone for helping us get through this past year. Jason has made it!! His last chemo was Dec. 17th, and he had his most recent scans on Jan.9th, which were CLEAR!!! He his still getting shots at home to boost his blood counts, that will end late next week. And his surgery to remove the port-a-cath is scheduled for Jan. 25th. Please pray for him to get over this last hurdle. We are so proud of everything he has done and how far he has come.
I would like to ask you all to say a special prayer for Matthew, a friend of Jason's with hepatoblastoma. Matthew has had a few lesions on his lungs that have been hard to control, and he had his third (and major)surgery yesterday to remove those spots and the lower part of his right lung. Pray for his quick recovery and his chance to beat this cancer.

Thank you all,
Charon

Tuesday, November 20, 2001 at 06:22 AM (CST)

Yesterday Jason went to the clinic to get counts done. They all came back really healthy, so we are going to go in tonight for his next to last treatment. He'll be home on Wed., but probably won't feel like eating on Thursday. So, we are going to cook our turkey and everything on Saturday instead. He is doing great, and starting to get excited about his birthday. I can't believe he is already going to be 6!! It doesn't seem like it has been that long.

We got some other really great news too! Jason has been asking for a long time, when we would have another baby. Yesterday we found out that will happen in July! He was bouncing off the walls happy!! (So are we.) Talk to you all soon,
Take care,
Charon

Sunday, November 11, 2001 at 06:32 PM (CST)

What a busy weekend! Jason's Papa came to visit us, and he will be here until Wednesday. We haven't stopped going yet.

Last week, Jason had to go to the hospital for a fever. We got to the ER at 8pm, it took them 2 hours to finally draw blood to get his counts. It was a nightmare, his finger blood clotted somewhere between his room and the lab, his port wouldn't work, even after three needle sticks. Finally around 1:30, we talked him to doing a needle stick on the back of his hand, unfortunately we didn't think we would need any more EMLA at the hospital, so we didn't have any on us, but he was brave and did it anyway. (They ended up sending us to the cancer floor, since the ER couldn't do anything right.) About 3am they told us his counts were high enough to go home, but we still had to go to the clinic on Thursday morning to get his port to work again. Luckily the heparin they put in his port the night before made it flush again. I don't care what happens after Dec. , but we really need this port to work for two more treatments!! Luckily everything has settled back down again, he went back to school on Friday. This Thursday is our next round of chemo, and we should get to come home on Friday afternoon!

Talk to you all soon,
Charon

Tuesday, November 06, 2001 at 10:32 AM (CST)

Hi everyone!

It has been a while, sorry about that. We just got some really good pictures of the kids. Last week we took pictures at their soccer games, Daddy is Jason's coach this year. Also, they got to go Trick-or-Treating. Jason wanted to be Woody and Cami was Tigger.We each carved our on pumpkin to be our luminaries coming up the driveway. Jason carved the one of Dracula.

His treatments are going well. He hasn't been missing too much school, suprisingly! His next treatment will be Nov. 15th, for a one night hospital stay. After that, only one left!! If all goes as planned, he should get his last one around 12/7. His last set of scans came back clear, still no signs of the tumor. Hope you are all doing well, keep in touch.

Promising to update more often,
Charon

Sunday, August 19, 2001 at 02:52 PM (CDT)

Make-A-Wish Trip!!!

Jason's trip was all of last week. We flew down to Orlando on Monday and we stayed at Give Kids the World Village, where he, and all of us, were treated like royalty. They had breakfast and dinner ready for us everyday and free all you can eat ice cream from 7:30am to 9pm every day. We had tickets to all four of the Disney Theme Parks. We made it to Magic Kingdom, Epcot, and MGM, but didn't make it to Animal Kingdom. We also spent a full day at Sea World. They also gave us tickets to Universal, but with everything we had to do, we never made it there. We are thinking of trying to do that later, when chemo is over.

Kindergarten starts tomoorow and he can't wait! He thought he should have been able to go yesterday when we got off the plane. He also has lost both of his two front bottom teeth, and he loved the tooth fairy!

Take care and we will talk soon,

Wednesday, July 25, 2001 at 05:21 PM (CDT)

Camp KEMO!

We are hearing from all of the Child-Life Specialists that Jason is having a great time at camp! One of the local newstations followed him around on Monday, and the clip aired tonight. You can see the story at www.wltx.com Click on the healthwatch button, and then look for Camp Kemo at the bottom of the page. He was also on the front page of the Metro section in today's paper! We have quite the little star!! We love him and we miss him, but we are assurred he is having a fabulous time!

Charon

Saturday, July 14, 2001 at 02:29 PM (CDT)

So sorry we haven't updated in a while. Jason has been doing great! He has completed 14 sessions of radiation and has 6 to go. He will go every morning next week, and the following Monday. After his final round, he will get on the bus to go to Camp Kemo (July 23). I can't believe he will be gone for a whole week, but it will be good for him. There are 10 "Peanuts" (5-6 year olds) going, half boys and half girls. They will have 3 counselors and one counselor in training just for his group! One of the counselors is named Jason, and he knows of our Jason already. Libby, Jason's radiation tech, is Counselor Jason's cousin. She told him to look for our Jason and take good care of him.

Tonight we are going to a Capitol City Bombers game. Jason got tickets from the clinic, and he is very excited. We haven't been to a baseball game since last year. Since it rained here on the Fourth of July the fireworks were cancelled and tonight is the make-up date! We didn't tell him about the fireworks yet, we are going to let it be a surprise. I felt horrible that he was in the hospital on the Fourth, but this will help make up for it.

Take care,
Charon

Wednesday, July 04, 2001 at 04:51 PM (CDT)

Jason was admitted to the hospital on Monday morning to begin his sixth round of chemo. Even though we got here at 8am, he wasn't able to start therapy until 11 that night. It turned out to be a blessing in disguise, because he is sleeping through chemo. He hasn't had a chance to get sick yet. After our last stay in the hospital, this is like heaven. We won't get to go home until Saturday though because his last treatment will start Friday night at 10pm.

Jason is still doing radiation. He has 7 treatments down and 13 to go. He looks forward to going down there. The radition techs just adore him!! He is doing great, and we hope you all are as well.

Charon

Monday, June 25, 2001 at 04:53 PM (CDT)

Radiation begins...

Jason had his first radiation treatment today. He was unbelievable! We had to leave him alone in the treatment room, which we all expected, yet hated to do, and he was absolutely still! We could see him on 2 different video monitors and we could talk to him through an intercom system. We all spoke and told him what a good job he was doing. When he came out (2 minutes later) he said he liked hearing us, but the nurse talks too loud.

He will keep going to radiation every day for the next four weeks, and then he will be finished. He did so awesome today that he even got a new game boy game! We are so proud of him. Tomorrow I will try to remember to take the camera and put up some new pictures of him.

Take care,
Charon

Tuesday, June 12, 2001 at 06:46 PM (CDT)

Jason finally received his latest round (5th total) round of chemo last night. He did pretty well, but the nausea was out of control. He is glad to be home again. We were in the hospital for a total of 26 hours! He is already clowning around in the living room with Cami like last night never happened.

Jason's two front teeth are both still loose, but don't show any signs of getting looser. Camp is coming up pretty soon too, July 23. Everyone at the hospital is getting these kids all worked up and excited about going.

Take care,
Charon

Wednesday, June 06, 2001 at 06:54 PM (CDT)

Denied again!

His counts went down to 660, so Jason was sent back home. We are going to wait until Monday to try again. It almost feels like I am an expectant mom. We keep packing a bag to take to the hospital, and making sure we have everything on the list, and then we find out it was "false labor"...HaHa!! Otherwise he is doing great. He keeps bargaining for "swim time", but the next few days are suppossed to be pretty rainy.

Going back to school has been very exciting for both Big Jason and me, but we are both looking forward to this weekend already. And we are thankful that they didn't want him to come back on Friday, so he can enjoy the weekend with us!

Take care,
Charon

Tuesday, June 05, 2001 at 06:57 AM (CDT)

Well, we have all seen a first this week. Before Jason can be admitted for more chemo, they have to do a blood count. Certain numbers have to be met or he can't have treatments. Yesterday was the first time Jason's counts were too low. We were surprised because he looks so good you would never know. His ANC was only 880 and it has to be at least 1000, a normal person's is around 2500. All of his other counts were good though. The procrit is really doing its job and his red blood count has actually stayed higher than a normal person since after his surgery. Right now his Hemoglobin is 14, and I believe normal is around 12, not sure of the exact number.

Anyways, Jason was thrilled to come home last night. He couldn't believe he was eating dinner with us all at home! Oh and is weight went UP!!! He started cancer treatments at 44.5 pounds, and we have seen him vary between 43 and 45, yesterday he weighed in at 47 pounds!!! I had just been told last week that if he maintains 45 we were doing good, so we are all very excited. Those of you haven't been around chemotherapy may not know, but eating is not at the top of their wants list. Jason hasn't had mouth sores, Thank God, but his tastes have changed so much. He went from loving chocolate and hating beef, to depising chocolate and craving steak. Not just any steak mind you, but Outback Steak. Outback was at the Relay for Life when we went a few weeks ago and he has been craving steak ever since then.

Hope you are all doing well. We will go back to the clinic on Wednesday for another possible admit. Hopefully he will keep that one, so we don't push his schedule back too much. Friday is his first appointment with the radiologists, they are going to walk him through the whole thing and make a body mold of him....

Take care,
Charon

Sunday, June 03, 2001 at 08:00 PM (CDT)

We have all been enjoying our last week of vacation. We all got busy in the yard and planted lots of flowers. A much needed improvement. We got out the swimming pool for the kids and they have a had a blast playing outside this weekend!

Jason is going to the hospital tomorrow morning for a one night stay, he will be receiving his 5th round of chemo. This time it is Vincristine, Actinomycin-D, and Cyclophosphamide, which is a one night stay at the hopital. We have also set a date for his radiation treatments to begin, June 25th. He will go once a day, five days a week, for four weeks. The treatments will only last 3-5 minutes, but he will have to be sedated each time to make sure he stays absolutely still. This means the visit each day will actually last 2-3 hours! Since Big Jason and I are both going back to school starting tomorrow, Mom will prove to be a great help in getting Jason to and from all of his appointments.

His two bottom front teeth are both still lose, but I wouldn't say they are ready to let go. We all have fun getting our turn to "wiggle" them. We are still amazed at how healthy Jason is considering all that he is going through. I will try to put up some summery pictures before next weekend so everyone can see how tan he looks!

Take care,
Charon

Tuesday, May 22, 2001 at 04:13 PM (CDT)

Hello everyone!

Jason continues to amaze us. He acts as thought he never had surgery, much less 3 weeks ago. He seems to have full range of motion and 95% of his strength back in his left arm. We never expected him to recover so well! He will very likely begin radiation in the next week or two. We aren't thrilled about it, but it gives him the best chances for survival. So, therefore we will do it.

He has his first "real" loose tooth today! Not counting the one he lost as a baby, this is the first time he will get to "see" the tooth fairy. He is very excited, but we had hoped he would loose them in kindergarten at least. He will be the only one in his class with permanent teeth, I bet.

Keep in touch!
Charon & Jason

Monday, May 14, 2001 at 08:37 AM (CDT)

Hello!

Jason has pretty much recovered from surgery. His left arm is still a little weaker than it used to be, but hey, we will accept that very thankfully! We are on our way to the hospital right now and we will be there until Friday afternoon/evening! This time he is getting his ifosfamide and etoposide for five days. Hope you all had a wonderful Mother's Day!

Charon, Jason, Little Jas, and Cami

Tuesday, May 08, 2001 at 07:22 AM (CDT)

Hello eveyone!

Jason surgery was a success! The doctor said he didn't find nearly as much as he had expected to, but he still removed the amount which was predetermined. He even got to come home from the hospital after only 2 days instead of the 5 he was scheduled for. Now he has the next week or so off to heal from surgery, then it is back to the grindstone and chemotherapy again. Probably around middle to late May.

We took him to his new school to register him for kindergarten yesterday. He seems really interested in going, but he was so shy when we were there. We got to meet the school nurse, Julie, who used to work in the Children's Cancer Center where Jason is a patient. It will be nice having someone at the school who knows what he is going through.

We also signed him up for Camp Kemo this summer. It is a 5 day, overnight camp run by the clinic nurses and doctors. No parents allowed. (that really breaks my heart) Most of the kids from the clinic go, and a lot of the volunteers are cancer survivors. They do everything they can to make these kids feel as normal as possible, even thought they have a medicine call 5 times a day. There will be a helicopter ride, canoe rides, horseback riding, and all of that good stuff.

Saturday, April 28, 2001 at 08:40 AM (CDT)

We are all settled in Columbia now. Jason has finished all of the chemo that he will have until after the surgery, which is scheduled for May 2 at 1:00pm. He will be in the hospital for about 5 days to recover from it, and then he has around 10 days at home for recovery. Then it is right back into chemotherapy, and they are adding in radiation also. He is still holding up very well. If he wasn't bald, you would never suspect that he was "sick". His Make-A-Wish volunteer is coming out to meet him on Monday, I think he his going to wish for Disney World. It is a pretty common wish, and the Crocodile Hunter wish is not a possibilty at this point.

Anyway, Jason is doing great. He is playing all the time, and we are going to the zoo today. We are trying to pack in a whole lot of fun activities before the surgery. Hope you all enjoy the pictures.

Thursday, April 19, 2001 at 04:19 PM (CDT)

We are moving to Columbia this weekend, very exciting for all of us!! Jason's surgery will be May 2 at 1 pm. So far everything is going as well or better than expected. We went to the clinic on Wed. April 18 and jason got to meet two of the Carolina Panthers! He was so excited! He got his first professional player's autograph, they gave him a t-shirt after they had signed it.

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