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Saturday, December 29, 2007 8:33 AM EST

Ben cleared his HDMTHX in record time! We're going home! We'll update after the new year!

Thank you for the prayers!!

Love,
Belinda, Chris, Jeremy and Ben

Wednesday, December 26, 2007 7:12 AM CST

Merry Christmas!

We stayed healthy and Ben was able to attend his school Christmas party last week, participate in the Nativity program, compete in our annual Frosty Bowl flag football games and most importantly, find presents underneath his very own Christmas tree in his very own home.

We've had a whilwind of a weekend and he's still ready for more. However, Ben will be admitted to the hospital today for another round of HDMTHX. He's feeling good and seemingly in a healthy state. Hopefully he'll only be in for a few days.

Hope everyone's holiday was happy and healthy!

Thanks again for all the prayers!

Love,
Belinda, Chris, Jeremy and Benjamin

Tuesday, December 18, 2007 5:01 PM EST

Ben is home!

His ANC is still low at 90 but the mouth sore that seems to be causing the problem is healing. The docs sent us home with the warning that if Ben gets a fever he must return to the hospital. Ben wanted out so badly we thought we’d risk it!

So, if all goes well, the chemo he was to receive on the 20th will now be administered on the 26th. Give us a better chance of being home for Christmas . . . I think.

Thanks again for all the prayers!

Love,
Belinda, Chris, Jeremy and Benjamin

Monday, December 17, 2007 12:39 AM CST

Ok. We got moved to the AFLAC wing last night. Its just so much better when we're surrounded by the staff we've known for almost four years!

Ben is still fever free and his ANC jumped from 19 to 80. Hopefully the number tomorrow will be high enough to get discharged.

What thisI little hospital stay has done is push Ben's next chemo date which was set for the 20th out to the 26th. So, instead of worrying that he won't be home for Christmas we'll just plan on going to the hospital the day after. Now we'll keep our fingers crossed that Ben will be out for our annual Frosty Bowl - a flag football event that we've hosted for the past few years which the boys have come to look forward to with anticipation equal to that of Christmas.

Anyway, all is good. Afterall, "It's the most wonderful time of the year! In fact it's the hap happiest time of the year!"

Thanks for the prayers!

Love,
Chris, Belinda, Jeremy and Benjamin

Sunday, December 16, 2007 4:20 PM EST

Hi everyone,

Had a great Saturday although Ben' suffered his first basketball loss of the season. The score was tight however, 14-16. Nothing to be ashamed about.

After the game we took home Ben's best bud, Ryan, for a sleepover. Jeremy asked his friend, Peter, over as well. All was fine as we headed out the door to see Alvin and the Chipmunks. With only 10 minutes until the end of the movie, Ben decided to sleep on my lap. I had a hunch something was up. About 30 mins. later he spiked a fever of 102. We headed to the ER.

His ANC was 19 so he was admitted to the hospital. We got to our room at around 3:30am. Ben was so tired, he slept through most of everything including the port access! I'd even specially requested the oncology nurses from the 3rd floor to do the access (Thank you, ladies!) because he always distresses with the ER nurses.

So, Ben's in the hospital. He's feeling fine as his fever never returned. But the docs have him on Rocephan, Fortaz and Vancomycin as a precaution. His white blood cells were elevated which is a sign that he's fighting something. He's also on Acyclovir to combat those nasty mouthsores. Oh, and there weren't any beds available in the AFLAC center so we're in another wing which is always a little unsettling.

Hoping Ben will stay on track to get his chemo this Thursday and be home before Christmas. Please say a little prayer?

Thanks, as always, for your kindness and continued prayers for Ben's cure.

Love,
Belinda, Chris, Jeremy, & Benjamin

Thursday, December 13, 2007 1:29 PM EST

Hi all,
Just got back from the clinic. Ben had an LP today. All went well although the Ketomine and Propofol mix of anesthesia really takes a toll on him. He's just completely out of it for at least 2 hours after the procedure.

Mouth sores persist but seem to be on the mend. He has not had any Tylenol w/codeine since yesterday and he just polished off two slices of pizza (cut into tiny bits) and a peanut butter & jelly cookie!

He's been out of school all week due to the sores but also because I heard that Fifths disease is making rounds in his classroom. Also heard there was an outbreak of lice. Upon learning this Ben declared, "They won't bother me because I don't have any hair for them to hide in!"

Ben's due back to the hospital next Thursday for more HDMTHX. Hopefully we can avoid the mouth sores this time and be out before Christmas eve!

Thanks, as always, for your kindness and continued prayers for Ben's cure.

Love,
Belinda, Chris, Jeremy, & Benjamin

Sunday, December 9, 2007 11:11 AM EST

Hi everyone!

Ben went to the clinic last Friday for another round of VP16 and Cytoxin.

Ben started the day out with a sore throat and a runny nose. I thought he'd caught a bug from school as Jeremy stayed home the day before with a cough and conjestion. Upon further inspection from Dr. Lew, we realized that the sore throat was due to a mouthful of sores! We're trying to keep them in check with frequent mouthwashing to keep them from getting infected. They have made it very difficult for Ben to eat. He's game to try anything, but unfortunately the pain is excrutiating when he realizes the mouth sores won't tollerate the food he's trying.

But I gotta hand it to the little guy. As uncomfortable as he is, he got up the next morning and played a bit with his buddy, Ryan, then went to his basketball game and scored 4 points! We went out last night and finally got our Christmas tree and this morning, Ben's been on his bicycle going from house to house with Jeremy looking for anyone who wants to play! I'm so happy he didn't inherit the "pity party" bone from me!

We're off to the Spinner's house this afternoon. They are friends from school and church who have generously hosted a Christmas party for the past three years in honor of Ben and all the other kids suffering from cancer.

Thanks, as always, for your kindness and continued prayers for Ben's cure.

Love,
Belinda, Chris, Jeremy, & Benjamin

Tuesday, December 4, 2007 12:52 AM CST

Ben's home! Actually, he was discharged around 11am, ate lunch and went to school. I'm going to finish hanging the icicles outside.

Thanks, as always, for your support and constant prayers!

Love,
Belinda, Chris, Jeremy, & Benjamin

Sunday, December 2, 2007 1:46 AM EST

We're in. Ben finally got a bed at 2pm yesterday and the chemo started at midnight. He should be finished with the last bag in about 10 hours then begins his flush.

Ben was so excited that he didn't gave to stay in the hospital on Friday night with Jeremy at home hosting a slumber party. Ben and I left the clinic and ran a few errands then picked up his brother and friends at carpool. They were surprised by happy to see him in the car.

They quickly rounded up some kids from the neighborhood for a football game. After that they played "war" and had dinner and finished the night off with the "Transformers" movie. Ben and his friends Ryan and Colin put out their magical elves and asked for some craziness that surely kept the elves up all night!

In the morning the kids found their room covered in toilet paper, Ben's socks thrown about his room, Jeremy's underwear (clean!) littering his room, a toy snake under my pillow, "Ho, Ho, Ho" written across Chris' forehead and the elves hanging upside down over the washing machine after and apparent water fight!

At 8am we headed over to the school for Jeremy's basketball game (won 13-8) then we were off to Ben's first basketball game in which he scored 6 points, a couple of steals and a handful of assists. They won 28-0!

After lunch Ben headed down to a waiting bed at Scottish Rite. He's in a great mood and resting from Friday and Saturday's fun. He's drinking pretty well so we're hoping he'll be out by Tuesday. Then back to school.

Thanks, as always, for your support and constant prayers!

Love,
Belinda, Chris, Jeremy, & Benjamin

Friday, November 30, 2007 4:27 PM EST

Head fake!

Ben got his LP at the clinic this morning then we were informed that all the beds were full at the hospital and were send home to try again tomorrow!

Although I just want to get this round of HDMTHX over with, Ben was overjoyed to be going home because Jeremy is having a slumber party! Now he won't have to miss it.

So, we'll call tomorrow to see when we need to check in. Hopefully it can be after Ben's first basketball game.

More soon!

Thanks, as always, for your prayers!

Love,
Belinda, Chris, Jeremy, & Benjamin

Monday, November 26, 2007 7:26 AM CST

Hi everyone!
What a great Thanksgiving! Lots of turkey, desserts and football. Can't ask for more than that!

Friday after Thanksgiving, our family went on our, now 4 year tradition, hike up Kennesaw Mountain. It's a pretty good hike especially if you're just getting up off the couch and Ben marched up like a trooper. He was a little whiney in spots, but that's not the chemo, that's just Ben!

He's off to school today and hopefully the rest of the week. He's feeling great and has a lot of energy. His next admit is this Friday. He'll get a lumbar puncture at the clinic then into the hospital for another round of high dose methotrexate.

Thanks, as always, for your prayers!

Love,
Belinda, Chris, Jeremy, & Benjamin

Wednesday, November 21, 2007 7:43 AM CST

Hi everyone!
Ben's visit to the clinic last Friday went according to plan. We were there a little longer than expected but he was happy and comfortable during the transfusion hours.

He's having a little trouble with mouth sores at the moment but fortunately they are not a constant nuisance to him. He attended school yesterday (mainly because it was only a half day and it was also Grandparents day at the school!) then he came home and played outsided until dinner time.

So, we're looking forward to celebrating this Thanksgiving holiday with family and friends and we would like to extend and heartfelt "thank you" to all of you for helping us through this tough time. Thank you for your prayers, for keeping up with Ben's progress and for being a part of our lives.

Happy Thanksgiving to each and every one of you!

Love,
Belinda, Chris, Jeremy, & Benjamin

Tuesday, November 13, 2007 9:47 AM EST

Surprise! Ben's home!!

The docs discharged him yesterday because his methotrexate level was coming down quicker than expected. I think that running the fluids at a higher rate did the trick. At 8:45pm on Sunday his level was already down to .21. So, they felt confident that he would be able to excrete the rest on his own at home. Woo hoo!!

But still no school today. Ben was excited about going but a little irritation developed on his bottom to keep him home at least for the day.

Forgot to tell you, Ben went to school last Friday before he got admitted and rode his bike to school for the first time! He was so proud of himself. What a big kid thing to do!

Anyway, that's it for now. Ben came home with a round of Mercaptopurine for 5 days and goes back to the clinic this Friday for more chemo - VP16 and Cyclophosphamide.

Thanks, as always, for praying for Ben.

Love,
Belinda, Chris, Jeremy, & Benjamin

On another note . . . Our angel, Jon Allmett, upon learning of Ben's relapse over the summer, wrote and began recording a song entitled, "Ben's Song". Shortly after, Jon passed away and a copy of the song was found on his computer which only contains his guitar and vocal tracks. We were very touched by his music but his presence made all the difference. Although unfinished, "Ben's Song" helps us feel Jon around us again. "Ben's Song" Music & Lyrics by Jon Allmett Performed by Jon Allmett

Sunday, November 11, 2007 2:05 PM CST

Hi everyone!
Ben finished his 24 hour HDMTX this morning around 2:30 and has begun the "flush". They're running his fulids at a higher rate this time around so he's peeing fast and furiously! They won't take a level until 8:45 tonight at which point they will also begin the Leukovorin. So, in the meantime, bottoms up! He's had over 35 oz. of fluid today in the form of water, raspberry blue icee, cranapple juice and sprite. Gives me the urge just writing about it!

Thanks for keeping up with us! And thanks, as always, for all of your prayers!

Love,
Belinda, Chris, Jeremy & Benjamin

On another note . . . Our angel, Jon Allmett, upon learning of Ben's relapse over the summer, wrote and began recording a song entitled, "Ben's Song". Shortly after, Jon passed away and a copy of the song was found on his computer which only contains his guitar and vocal tracks. We were very touched by his music but his presence made all the difference. Although unfinished, "Ben's Song" helps us feel Jon around us again. "Ben's Song" Music & Lyrics by Jon Allmett Performed by Jon Allmett

Wednesday, November 7, 2007 4:10 PM CST

Hi All,
Ben has been feeling great. His mouth sores are almost gone and have not been bothering him for days. He's still on a sugar high from Halloween but is now looking forward to Christmas. How excited is he going to be when I break the news that we have Thanksgiving yet to celebrate?!

Ben will be going into the hospital this Friday the 9th for another round of HDMTX. They will start running his fluids at a higher rate from the beginnning so hopefully we will be out by early next week.

On another note . . .
Our angel, Jon Allmett, upon learning of Ben's relapse over the summer, wrote and began recording a song entitled, "Ben's Song". Shortly after, Jon passed away and a copy of the song was found on his computer which only contains his guitar and vocal tracks. We were very touched by his music but his presence made all the difference. Although unfinished, "Ben's Song" helps us feel Jon around us again.

"Ben's Song"
Music & Lyrics by Jon Allmett
Performed by Jon Allmett


Thank you, as always, for your constant prayers!

Love,
Belinda, Chris, Jeremy and Ben

Thursday, November 1, 2007 9:58 AM CDT

Hi all!!

Ben got discharged yesterday morning around 8am. And who did we see in the lobby? Jake Rivers! He was just leaving the emergency room after 3 hours to finally get diagnosed with sinusitis. Phew!

We stopped off at Walmart before heading home to buy the much needed Thrillville game for his Playstation2 then found parked in our driveway the golf cart we rented for Halloween night! Ben and I took a spin around the neighborhood and picked up Joe who was home sick, but not sick enough for a quick ride.

Ben went to school for the Halloween party. He was so excited to see his friends and for the candy fun to begin!

As soon as school was over our Halloween party began. Ben was so excited that he had his costume on for 4 hours before the trick of treating even began. The golf cart ended up being a good idea although he kept up pretty well all on his own for the first 20 minutes. Thanks, Kenna, for sticking with Ben for the rest of the tour!

The kids raked in a bushell of candy and got the beegeebees scared out of them at the haunted house down the street. Ben was in tears saying that he doesn't usually get scared from things like that. (He's never been to a haunted house.) So, there's a first for everything and that when you learn, you're a big chicken like your mommy, Ben!

So, although the stay at the hospital was longer than anticipated, we still made it home in time to celebrate Halloween. Thanks to everyone that came over and made it an extra special day for Ben!

Love to you all!!

Belinda, Chris, Jeremy & Benjamin

Tuesday, October 30, 2007 4:28 PM EST

We were on track to go home around 8:30pm tonight until a couple of hours ago.

Ben finished his blood transfusion around 1:00 and he was given an hour to relax unincumbered by his IV pole. Then around 2pm he started his IVIG transufsion. This med gave him trouble the first time he received it a couple of months ago. Well, more of the same.

After about an hour of transfusion he began to rigor. His temperature and blood pressure spiked and he threw up. They gave him demerol to counteract the reation and another hour later we're trying it again but at a much slower rate. That puts our discharge time at roughly 12:30am. I think we'll just spend the night.

We'll still be out in time for Halloween though!

Thanks for praying.

Love,
Belinda, Chris, Jeremy & Benjamin

Monday, October 29, 2007 11:35 PM EST

So, Ben's what they call a "slow excreter". His body likes to hang on to the methotrexate indicated by his number tonight....... .11! Still not low enough to start the transfusions. They will draw more blood at 4am and SURELY his level will be just right by then!

Supposedly some people excrete this stuff faster than others. Now that we know Ben isn't one if those people, the next time we're in for HDMETX (Nov. 9) then they will run his fluids at a much higher rate and hopefully help his body flush it out.

He started showing signs of wearing down today shedding a few tears because he really wants to be home. Jeremy's feeling it too. It's just a very unsettling feeling when our routine changes so drastically.

Well hopefully he'll be home tomorrow early in the evening. He's got a Halloween party at school to attend to for goodness sake!

Please keep praying.

Love,
Belinda, Chris, Jeremy & Ben

Monday, October 29, 2007 11:11 AM EST

Well, Ben's methotrexate level came down, but not enough. We're holding at .13 this morning. Hopefully another 12 hours will do the trick. They will draw another level at 9pm and if it is less than .1 they will start his blood transfusion which will take about 3 hours. Then they will give him his IVIG which takes 6 - 8 hours. We should be home by late morning/early afternoon, just in time to start our Halloween fun!

Thanks for praying!

Love,
Belinda, Chris, Jeremy and Benjamin

Sunday, October 28, 2007 10:14 PM EST

Well, Ben's got 2 mouth sores already. The first one occured this morning and he started complaining about the second one a few minutes ago right before he fell asleep. He doesn't complain about them hurting very much. The nurse offered him some Tylenol with codiene but he passed. He said they didn't hurt that bad!

Ben and Jeremy spent the day together again. I saw the hugging each other while they were watching tv at one point and when they noticed I was watching them, they turned the hug into a wrestling move. Boys!

Their friend, Joe, came to visit late in the afternoon and they had army man battles for at least 3 hours.

Ben's methotrexate level was .35 this morning (magic number for discharge is below .1). They drew blood again about an hour ago. If level is below .1, they will begin a blood transfusion as well as an IVIG transfusion. The earliest we could go home would be tomorrow afternoon. If his level is above .1, our discharge would be delayed at least until Tuesday morning.

Oh well.

As always, thanks for the prayers!

Love,
Belinda, Chris, Jeremy & Benjamin

Saturday, October 27, 2007 11:00 PM EST

So, Ben's body seems to be holding on to the methotrexate a little stronger than the doctors hoped. They want his level to be below .10. This morning he was at .9 and the expected that he would be down to .4 by that time of day. They've increased his fluids and depending on the level taken at 9pm tonite, they may increase his leukovorin or they may give him his walking papers to finish out the weekend at home.

He's also developed a tiny sore in his private area from excreting the methotrexate which can easily irritate the skin. He's not in constant pain. It seems to just be more annoying than anything else. It seems that alot of HD Methotrexate kids are suffering from headaches too. Ben started one tonite. Again, he's not experiencing enough discomfort to warrant any major complaints. He just tells us what's wrong and goes right back to what he was doing - xbox, movies, tv or just acting goofy with Jeremy.

So, he's in a really good mood. He hasn't even complained about being at the hospital. He got a call from Coach Richard of his flag football team that his team won the championship game today. I heard it was really competitive. I guess they could have used Ben out there today.

Please keep the prayers coming. Even if Ben comes home tomorrow we'll still need to keep up the flushing of the chemo. I really want him to avoid the side effects this chemo can bring.

More later!

Love,Belinda, Chris, Jeremy & Ben

P. S.
Mrs. Rivers, Ben wanted me to tell you, "Wait until next year! GO GATORS!"

Friday, October 26, 2007 11:32 PM EST

Hi everyone,
Ben is tolerating his high dose methotrexate so far. Yesterday started off with a triple threat LP. He did well although the anesthesia mix they've used the past couple of times makes him a little uneasy when he wakes up. Instead of straight propofol which he was soaking up like a sponge, they've mixed in with half ketamine (sp?). The doc said the latter is similar to angel dust and puts him in a trance like state. I'll tell you, for me watching him get that way is very disturbing. Anyway, it seems to do the trick for the LP. No fake sleeping with ketamine!

After the LP they pre-hydrated him with liquid for about 6 hours before giving him a 30 minute concentrated version of methotrexate. When that was done, they hung the 24hour version and we waited for a hospital bed.

We got to the hospital around 5:00. Ben was in a good mood. Chris brought Jeremy over after basketball and football for him to spend the night. Jeremy opted to stay with Ben in the hospital today when he had a day off from school rather than going to a friend's house. He's a good boy.

The boy's friend, Matthew, came over for a few hours and played "drinking" games with us! The more Ben drinks the less likely he will suffer side effects such as mouth sores. The nurse said he could also get them on his bottom and anywhere in between. By the time Jeremy and i left to go home, i think Ben had already drank about 35oz. of liquids. I didn't count how much Jeremy had but he went to the bathroom approximately 12 times in a 45 minute period!

So tomorrow they give him the leukovorin to help his body expel the chemo and they will test the level of methotrexate in his body. Once it's at a safe level, they will let him go home. Hoping for early Sunday!

Thank always for your prayers. We're hanging in. Go Gators!

Love,
Belinda, Chris, Jeremy and Ben

Sunday, October 21, 2007 6:29 PM EST

Hi everyone!

New pictures!
Ben had another great week. He's happy, energetic, goofy, whiney and annoying - in other words, he's regular ole' Ben. He went to school everyday and tried his best to catch up with the rest of his classmates. I don't think he's too far behind. And he really enjoys doing the homework!

It was tough getting Ben to go to school in the beginning of the week. He understands and admits that when he's away from school, it's uncomfortable going back and reconnecting with all of his friends. He said he feels so nervous that by lunch time he doesn't even have an appetite. Slowly but surely throughout the week, it all turned around. By pizza day on Friday, he was all about his lunch!

Ben made it to a football practice during the week and carried the ball a couple of times during his last game on Saturday. He loves hanging out with his friends and doing all the things they are doing. He's happiest when he's just one of the guys.

Saturday night Ben's pal, Andrew, came to the house and slept over. And today he went to a birthday party. I think he was outside enjoying the great weather for the most part of the weekend.

Ben has come down with a slight case of the sniffles and a cough. Chris and I decided to keep him out of school this week. His next scheduled hospitalization was slated for Oct. 29. Fearing that he would most likely still be in the hospital during Halloween, I made a call to the clinic last week. I pleaded his case and they agreed that Ben could start his chemo this Thursday instead. (Acutally, I did very little pleading. Thank you Nurses Kim and Heather for rearranging the schedules so that Ben could be home for Halloween!)

Ben will be receiving high dose methotrexate on Thursday and will remain in the hospital on leucovorin to flush out the chemo and lessen the side effects.

More on Thursday!
Thank you, as always, for your constant prayers!

Love,
Belinda, Chris, Jeremy and Ben

Sunday, October 14, 2007 10:05 PM EST

I have to say, this has been a great week. Even through Ben had to go to the clinic every day for chemo, he felt good and his spirits were high! He didn't mind having to spend the entire day there. I think it really makes a difference when he knew that at the end of the day he'd be sleeping in his own bed in his own home.

Yesterday when we walked into the clinic we ran into our Karate friends, the Brennans! It was so nice to see familiar faces. Their oldest child is being monitored by the clinic for unusually high red blood cell counts. It would be nice if you guys could throw some of your prayers their way. Although otherwise, she is a healthy normal kid, having uncertainties like hers can be stressful for the family.

Ben and I spent about 5 hours at the clinic and ended the day with a Nupogen shot. He struggled with the thought of that for a couple of hours then said, "Can I just get it over with?" We called in the nurse and he just did it. The de-accessing went even better. They used a different dressing on his port site called an island dressing that worked out beautifully! Much less adhesive and no irritation. We were off to a great start to our weekend!

When we came home Ben was so excited to have his line out that as soon as he saw Chris he jumped out of the car and asked him if he wanted to play football! Shortly afterward, friends came over for an impromptu party before we headed over to the high school homecoming game. (Thanks, Maura and Beth for coordinating everything at the last minute!!!)

After a hot dog, chili and a game of front yard football, we headed over to Blessed Trinity for the game. I thought our day couldn't be going better until we ran into Sean Dever. The smile on his face and the healthy glow on his cheeks made our day perfect. Oh, and Blessed Trinity won too!

The highlight of Saturday was a birthday party both Jeremy and Ben were invited to. Get this . . . it was a FOOD FIGHT party! They slung mashed potatoes, spaghetti, jello, whipped cream, frozen peas, dry cereal and all kinds of things boys just get the urge to throw at each other! It was a one of a kind party that Ben will never forget!

So, Ben has a break from chemo for the next two weeks. They should be good ones because he's really feeling and looking like his old self!

Thanks again for the prayers. We need every single one!

Love,
Belinda, Chris, Jeremy and Benjamin

Wednesday, October 10, 2007 11:36 AM CDT

Hi everyone!
Ben's feeling great this week. We're just spending long hours at the clinic every day this week getting VP16 and Cytoxin. He also got the triple threat spinal tap on Monday. He's tolerating it all pretty well although when it comes to accessing and de-accessing his port it's like we're starting from day one.

He's been through so much lately that now EVERYTHING scares him. He's even decided to keep his line in all week instead of removing it every day. Dr. Lew is considering increasing his Paxil. We tried an Atavan yesterday on top of the Paxil but he experienced drastic mood swings at the end of the day. Although the docs don't think the Atavan it to blame they suggested discontinuing it for now.

So, since Ben is feeling well, I'm trying to get him to do a little more homework each day. Fortunately, he enjoys it very much. He's really interested in math just like Jeremy.

After Friday Ben has two weeks off of chemo. He should be feeling pretty good for the mist part. His counts will start dropping by the second week. Then he'll be admitted to the hospital for his first round of high dose methotrexate.

Please keep the prayers coming! We need them at every step of this journey!

Love,
Belinda, Chris, Jeremy & Benjamin

Thursday, October 4, 2007 10:01 PM EST

Well, before Monday happened I'd hoped to update you with good news from last week!

Ben, as you know, was dicharged from the hospital (again) last Monday and he went straight to school! Then he attended Tuesday and then again on Wednesday, took a break on Thursday for pre-op appointments, and finished the week off with a half day at school on Friday! He was so happy to be back at school with all of his friends.

Last Saturday he played in his first flag football game. His team was undefeated prior to the game and Ben helped them hold their record by scoring the extra point at the end of the game! The referee even allowed him to spike the ball without penalty!

On Sunday we were supposed to go to the church picnic but got to go to the Falcon's game with the boys' friend, Drew, instead! We asked Ben how he liked watching the game from the Super Sky Box and with every ounce of sincerity and delight he said "It was awesome! It was so clean!" (Thanks Nichols Family!)

So, the week leading up to the port replacement couldn't have been better!

Chemo has been postponed until next Monday when they will do a spinal tap and administer chemo.



Thanks, as always for praying! We couldn't get through this without you.

Love,
Belinda, Chris, Jeremy and Benjamin

Wednesday, October 3, 2007 7:09 PM CDT

Hi all!
Old port out (every bit of it!), new port in and functioning, fever- free for 24 hours, vitals stable, counts normal, incisions healing and tooth pulled! Ben's done and happy to be going home!

Belinda








Tuesday, October 2, 2007 7:56 AM CDT

***AFTERNOON UPDATE***
Eggleston docs were able to fish out the stray piece of line in its entirety. Ben is resting comfortably.
***AFTERNOON UPDATE***


OK. Here it is.

Ben went to the hospital bright and early this morning for his port replacement procedure. Everything was going well, the OR seemed to be on schedule. Ben had a 9am procedure time. While we waited he was in a great mood. He wheeled himself around the waiting room in a wheel chair then we played "hot potato" with Chris and Uncle Ruben.

Ben was given a dose of Versed to calm him before they took him to the OR and was also given a breathing treatment to settle a little cough he's been nursing for almost two months.

About an hour after they took him to the OR we got a visit from his surgeon, Dr. Glasson. She informed us that Ben was in the recovery room and doing well. The surprise was that in removing the old port she discovered why we'd been having problems with it recently. The silicone catheter attached to the port which carries the meds thru the heart had practically desintegrated over the years. As she tried to pull it out, it kept breaking into pieces. She explained to us that Ben was probably one of the last kids at Scottish Rite to receive the faulty port. She said they'd stopped using that partucular brand because of similar complications. Finally, after fishing around a while and placing the new port, she was certain that she'd removed the entire catheter. But to play it safe, she ordered a chest xray.

20 minutes later she returned to our room to inform us that she, in fact, was not able to remove the entire catheter as a part of it (approx. 1" long) was found lodged in his pulmonary artery and she was not going to be able to get it out. An Interventional Cardiologist was needed. Only thing was that Eggleston is the only local pediatric hospital with that specialty.

The decision was made to transfer Ben to Eggleston and try to get the procedure done in the afternoon.

Some long hours later, we weren't anywhere closer to getting him moved. Chris and I were starting to feel guilty as they offered that we could go back to recovery to see Ben but opted to stay back. They weren't going to allow us to stay long with him so instead of a quick hello and good bye we decided to wait until he asked for us so that he wouldn't be scared and upset with us leaving.

Turns out there was some confusion over how Ben was to be accepted over at Eggleston. As a cardiac patient or a cancer patient? Who knew that would even matter? It seems that when the hospitals are short on beds then it's a big deal. So while the hospitals argued over which department would have to give up a bed for Ben, he was stuck in the recovery room. Starving, by the way. He hadn't eaten for 21 hours! They wanted to keep him NPO in case they were able to do the procedure today.

But once we uncovered the hold up and told enough Scottish Rite personnel who were promptly disgusted with the news, they got on their phones and got things moving. Unfortunately, by the time the transport team was dispatched it was already too late to do the procedure today.

So, Ben and Chris got to ride in an ambulance. (At least Ben got a liitle fun out of the day!) And he is third in line for procedures tomorrow putting him somewhere in one of the late morning slots.

The kid's a trooper, I must admit. When Chris and I finally showed up in the recovery room he was having a pleasant conversation with his nurse about all the pets each of them had owned. Ben made some funny faces for the docs and nurses, made a few comments about how Chris snores and told us that he'd heard a rumor that Elvis died while he was sitting on the toilet! He just keeps us going.

He had a fever as the transported him so he's getting an antibiotic for that. He also has some discomfort from the new port which they are managing with Fentanyl and morphine. Dr. Lew called it a week for Ben and decided that he'd had enough already and postponed chemo for a week. This way works out great for us as well. Ben will get an LP next Monday (which they were supposed to do today but overlooked the order somehow!) and will be outpatient the rest of the week for this round of chemo.

Please keep your prayers coming in for Ben. We certainly saw them in action today:
- The surgeon was confident she'd retrieved the entire catheter but ordered a chest xray anyway.
- The radiologist missed the stray piece of catheter and reported that Ben's chest was clear! But instead of taking her word for it, the surgeon had a peek for herself and found the piece lodged in the pulmonary artery.
- Ben was calm and comfortable for hours after the surgery and was kept entertained by his nurse during the whole transition fiasco.

Please pray again for Ben's comfort as well as a successful procedure. Please also pray for Jeremy. He's been worried about his kid brother recently and today's news did not help matters.

Thanks to all of you who gathered this morning to say the rosary for Ben. We feel you around us!

Belinda

Tuesday, October 2, 2007 7:56 AM CDT

***AFTERNOON UPDATE***
Eggleston docs were able to fish out the stray piece of line in its entirety. Ben is resting comfortably.
***AFTERNOON UPDATE***


OK. Here it is.

Ben went to the hospital bright and early this morning for his port replacement procedure. Everything was going well, the OR seemed to be on schedule. Ben had a 9am procedure time. While we waited he was in a great mood. He wheeled himself around the waiting room in a wheel chair then we played "hot potato" with Chris and Uncle Ruben.

Ben was given a dose of Versed to calm him before they took him to the OR and was also given a breathing treatment to settle a little cough he's been nursing for almost two months.

About an hour after they took him to the OR we got a visit from his surgeon, Dr. Glasson. She informed us that Ben was in the recovery room and doing well. The surprise was that in removing the old port she discovered why we'd been having problems with it recently. The silicone catheter attached to the port which carries the meds thru the heart had practically desintegrated over the years. As she tried to pull it out, it kept breaking into pieces. She explained to us that Ben was probably one of the last kids at Scottish Rite to receive the faulty port. She said they'd stopped using that partucular brand because of similar complications. Finally, after fishing around a while and placing the new port, she was certain that she'd removed the entire catheter. But to play it safe, she ordered a chest xray.

20 minutes later she returned to our room to inform us that she, in fact, was not able to remove the entire catheter as a part of it (approx. 1" long) was found lodged in his pulmonary artery and she was not going to be able to get it out. An Interventional Cardiologist was needed. Only thing was that Eggleston is the only local pediatric hospital with that specialty.

The decision was made to transfer Ben to Eggleston and try to get the procedure done in the afternoon.

Some long hours later, we weren't anywhere closer to getting him moved. Chris and I were starting to feel guilty as they offered that we could go back to recovery to see Ben but opted to stay back. They weren't going to allow us to stay long with him so instead of a quick hello and good bye we decided to wait until he asked for us so that he wouldn't be scared and upset with us leaving.

Turns out there was some confusion over how Ben was to be accepted over at Eggleston. As a cardiac patient or a cancer patient? Who knew that would even matter? It seems that when the hospitals are short on beds then it's a big deal. So while the hospitals argued over which department would have to give up a bed for Ben, he was stuck in the recovery room. Starving, by the way. He hadn't eaten for 21 hours! They wanted to keep him NPO in case they were able to do the procedure today.

But once we uncovered the hold up and told enough Scottish Rite personnel who were promptly disgusted with the news, they got on their phones and got things moving. Unfortunately, by the time the transport team was dispatched it was already too late to do the procedure today.

So, Ben and Chris got to ride in an ambulance. (At least Ben got a liitle fun out of the day!) And he is third in line for procedures tomorrow putting him somewhere in one of the late morning slots.

The kid's a trooper, I must admit. When Chris and I finally showed up in the recovery room he was having a pleasant conversation with his nurse about all the pets each of them had owned. Ben made some funny faces for the docs and nurses, made a few comments about how Chris snores and told us that he'd heard a rumor that Elvis died while he was sitting on the toilet! He just keeps us going.

He had a fever as the transported him so he's getting an antibiotic for that. He also has some discomfort from the new port which they are managing with Fentanyl and morphine. Dr. Lew called it a week for Ben and decided that he'd had enough already and postponed chemo for a week. This way works out great for us as well. Ben will get an LP next Monday (which they were supposed to do today but overlooked the order somehow!) and will be outpatient the rest of the week for this round of chemo.

Please keep your prayers coming in for Ben. We certainly saw them in action today:
- The surgeon was confident she'd retrieved the entire catheter but ordered a chest xray anyway.
- The radiologist missed the stray piece of catheter and reported that Ben's chest was clear! But instead of taking her word for it, the surgeon had a peek for herself and found the piece lodged in the pulmonary artery.
- Ben was calm and comfortable for hours after the surgery and was kept entertained by his nurse during the whole transition fiasco.

Please pray again for Ben's comfort as well as a successful procedure. Please also pray for Jeremy. He's been worried about his kid brother recently and today's news did not help matters.

Thanks to all of you who gathered this morning to say the rosary for Ben. We feel you around us!

Belinda

Sunday, September 30, 2007 9:38 PM CDT

Hi everyone,
We had a great weekend! So great that I'm exhausted! I will fill you in later but wanted to make sure you knew that Ben is having his port procedure tomorrow. At 9:00am they will remove his old one and replace it with a new one. He will also begin his 3rd phase of chemo.

Ben will be admitted Monday night for chemo and post procedure observation. If all is well, he could go home as early as Tuesday afternoon and receive the balance of this week's chemo on an outpatient basis.

Please pray for Ben's comfort and strength. He is scared of the procedure tomorrow and cried tonight telling me that all of this is just too hard for him. Please pray that God is with the doctors and nurses in the operating room and guides them through a sucessful and uneventful procedure.

Love,
Belinda, Chris, Jeremy & Benjamin

Monday, September 24, 2007 9:25 AM CDT

Just got the news that Ben is getting sprung from the joint! Counts are good. Bacteria tests are all negative.

And no fevers for 32 hours!

He'll be getting his PICC line out because the docs think it is the cause of the mysterious fevers.

His next appointment is next Monday for a port replacement and possible next chemo round.

I'll keep you posted!


Belinda

Sunday, September 23, 2007 5:09 PM EST

Well . . .

There's not too much to report. We're facing the same thing as we were for the past three weeks. More fevers. Although the fevers are not so frequent and don't seem to be as severe. Ben's appetite is good. His spirits are up although he'd rather not be in the hospital. He's keeping himself busy with xbox and movies but this time around has told me that we'd better get started on his spelling words from school.

Last Wednesday started out well. I got to the hospital early in the morning and learned Ben was being discharged. I couldn't start packing quick enough! Ben headed down to the activity center where Camp Sunshine had set up crafts and games for the kids all week long. Ben had gone everday and was set on making a tie dyed pillow case before we left. He got interrupted a couple of times by the doctors for a last minute inspection for what they believe was colitis. It seemed to be the only thing that showed up on his last CT scan the day before.

When Ben and I arrived at the house we couldn't believe our eyes! The house and yard were covered with Welcome Home banners from all of Ben's friends! Balloons and food and a great big Gator head given to him by the Davis and Hopkins families brightened the house. Mrs. Davis picked up Jeremy from school and kept it a secret that Ben was home. I haven't seen a bigger smile on his face!

The next day we were just going to relax except for the visit from the Home Healthcare nurse. Chris went to work and Jeremy was a school when she arrived. Ben immediately asked me if he was going to have to get a dressing change on his line. A quick check with the nurse's boss and she gave Ben a reprieve on the change since it had just been done the day before at the hospital.

I had about and hour's worth of paper work to fill out. Then we were ready for Ben. The nurse was going to show me how to flush his line and administer his daily Nupogen. As she attempted to push the first saline through, she was met with some resistence. The line, it seems, had clotted over night. I knew what was coming next. She broke the news as gently as she could to Ben that she'd have to remove the dressing to inspect the line. We were having such a good day. Ben was in a great mood and it was our first day home from the hospital in 23 days. Now this. Removing the tape really is like peeling a layer of skin off. Then there's the cleaning. Three rounds of alcohol and three rounds of Betadine. I thought Ben was going to pass out from all of his crying and screaming. And of course, the line looked fine.

That's when we were sent down to the clinic for them to flush the line and that took all of 30 mins. When Ben and I got home, I gave him his Nupogen and we settled in for a quiet evening. At about 6:30 he became feverish. I made the required call to the doc on call but knew we'd be heading down to the emergency room.

Carol, Ben and I arrived at the ER at about 9:30 and he was not happy one bit. He was so scared that he was going to have to sleep at the hospital. Doctor Adissa who had seen Ben every day for the 3 weeks he was in the hospital just happened to be in the ER that night. She knew his situation but also new he was anemic and needed blood. However, there were no beds available in the hospital. She sent us home with instructions to be at the clinic first thing in the morning for a transfusion.

Ben wore a new orange hoodie I bought him because it is on of Florida's colors. He was cold and shivering when we arrived at the infusion room. Then he threw up. We knew the fever was just around the corner. He got up to around 102 and we waited for it to come down before they started the transfusion. They also started him on Fortaz and Zyvox. He deveoloped a geographic looking rash on the top of his head but didn't complain of itchiness. It may have come from his new hoodie, but no one really had a good guess. He was given a benedryl and he fell asleep for a couple of hours. Dr. B came in and told us that we was going to admit Ben again until they could figure out what was causing the fevers. So far, none of his blood or stool cultures have grown any bacteria. Hmmmmmm.

So, Ben finally got a room Friday night on the third floor although we are not in the cancer wing of 3North. We are with the diabetic kids on 3 East. Boy do they have it made! Bigger rooms with big windows with great views! The nurse came in this morning and told Ben that a bed had opened up on 3 north and that he'd be moving. "No thank you" was his response. He knows a good thing when he sees it!!

That's really all there is. Come and visit if you'd like. He feels great, his counts are up and the fevers are few and far between (just not far enough for discharge!)

Thank you to everyone providing us meals and jumping in to help us with Jeremy. Our strength comes from prayer and friends like you!

Love,
Belinda, Chris, Jeremy & Benjamin
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
And keep the following children in your prayers as well.

Sean Dever
Jake Rivers - relapsed ALL on May 24, 2005
Annie Coyle
William Olson
Kylie Barry
Gwen Mason
Gracie Mae Malloy
Andrew Vassil
Will Hennessy
Zach Hoechstetter
Merrill King
Jack Sanders
Brady Wolfe
Brady Scott
Holly Moore
Ian Rice
Sami Petrucciani


And for the angels who watch over us:

Jon Allmett - August 19, 2007
Sam Robb - June 25, 2007
Ethan Alain - April 28, 2001 - Aug. 3, 2005
Coulter Hampton - March 29, 2005
Haley Thompson - February 3, 2003 – December 19, 2004
Shelby Prescott - December 30,1998 - October 22, 2004
Carter Martin - November 20, 1996 - September 12, 2004
Alex Scott - August 1st, 2004

PAST NEWS:

Jeremy has a website! Hope to see you there!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
With the help of the following organizations, we are devoted to finding a cure:
CureSearch
CureSearch Athletics
Cure Childhood Cancer
The Leukemia Lymphoma Society

With the help of the following organizations, we are devoted to finding peace in every moment:
Make A Wish Foundation
Camp Sunshine
Lighthouse Family Retreat

Friday, September 21, 2007 10:26 AM CDT

Ben's being admitted again...


Rough day yesterday. PICC line had a clot so home healthcare nurse was unable to administer meds. Ben was sent to the clinic where they flushed out the clot. Returned home and I administered the Nupogen around 5:30. At 7:00 Ben started having a fever. We ended up at the ER last night where they gave him Rocephan at about midnite and we were instructed to return to the clinic in the a.m. for a blood transfusion. All of his counts were good except for hemoglobin which
was at 6.

He spiked another fever about an hour ago and the decision was made to admit. We're in the clinic right now getting Fortaz and Zyvox antibiotics. Ben will get a transfusion after that. Then we'll head over to the hosiptal as soon as a bed opens up.

More later!

Love,
Belinda, Chris, Jeremy & Benjamin
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
And keep the following children in your prayers as well.

Sean Dever
Jake Rivers - relapsed ALL on May 24, 2005
Annie Coyle
William Olson
Kylie Barry
Gwen Mason
Gracie Mae Malloy
Andrew Vassil
Will Hennessy
Zach Hoechstetter
Merrill King
Jack Sanders
Brady Wolfe
Brady Scott
Holly Moore
Ian Rice
Sami Petrucciani


And for the angels who watch over us:

Jon Allmett - August 19, 2007
Sam Robb - June 25, 2007
Ethan Alain - April 28, 2001 - Aug. 3, 2005
Coulter Hampton - March 29, 2005
Haley Thompson - February 3, 2003 – December 19, 2004
Shelby Prescott - December 30,1998 - October 22, 2004
Carter Martin - November 20, 1996 - September 12, 2004
Alex Scott - August 1st, 2004

PAST NEWS:

Jeremy has a website! Hope to see you there!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
With the help of the following organizations, we are devoted to finding a cure:
CureSearch
CureSearch Athletics
Cure Childhood Cancer
The Leukemia Lymphoma Society

With the help of the following organizations, we are devoted to finding peace in every moment:
Make A Wish Foundation
Camp Sunshine
Lighthouse Family Retreat

Wednesday, September 19, 2007 9:15 AM EST

Ben's coming home today!!

ANC = 480
Scans = negative

Monday, September 17, 2007 2:33 PM CDT

Quick update:

Ben's ANC is 130! That's more than double from yesterdays counts! He had a fever this morning but hasn't had one since.

We'll do another CT scan tomorrow now that he's got some white cells to view but their talking about discharging Ben within the next couple of days as long as the fevers stay away.

Thank you for the prayers! They're working!!!

Love,
Belinda, Chris, Jeremy & Benjamin
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
And keep the following children in your prayers as well.

Sean Dever
Jake Rivers - relapsed ALL on May 24, 2005
Annie Coyle
William Olson
Kylie Barry
Gwen Mason
Gracie Mae Malloy
Andrew Vassil
Will Hennessy
Zach Hoechstetter
Merrill King
Jack Sanders
Brady Wolfe
Brady Scott
Holly Moore
Ian Rice
Sami Petrucciani


And for the angels who watch over us:

Jon Allmett - August 19, 2007
Sam Robb - June 25, 2007
Ethan Alain - April 28, 2001 - Aug. 3, 2005
Coulter Hampton - March 29, 2005
Haley Thompson - February 3, 2003 – December 19, 2004
Shelby Prescott - December 30,1998 - October 22, 2004
Carter Martin - November 20, 1996 - September 12, 2004
Alex Scott - August 1st, 2004

PAST NEWS:

Jeremy has a website! Hope to see you there!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
With the help of the following organizations, we are devoted to finding a cure:
CureSearch
CureSearch Athletics
Cure Childhood Cancer
The Leukemia Lymphoma Society

With the help of the following organizations, we are devoted to finding peace in every moment:
Make A Wish Foundation
Camp Sunshine
Lighthouse Family Retreat

Saturday, September 15, 2007 11:47 AM CDT

Hi Everyone,
We’re still holding. Everything’s just about the same since my last update. Fevers, no bacteria growth in the blood cultures, continuing antibiotics and antifungal.

Ben’s lost about 10 lbs. since he was admitted on the 27th. He’s having difficulty eating due to change in taste and lack of appetite. The intermittent nausea doesn’t help much either. We end up giving him BenPhen (a combination of Benadryl and Phenergan) which works quickly on the nausea but it knocks him out during prime eating hours. Yesterday the docs laid down the law and I had to get serious with Ben. They’ve ordered a daily weight monitoring as well as meticulous record keeping of intake of all foods. I know they’re leaning toward a feeding tube and if I know Ben, it’s not at all anything that he’d be interested in.

I had a serious talk with him about his two options: feeding tube or eating. I pointed out the pros and cons of each and he started to cry. (Crying’s bad too because he can work himself up so much that he throws up anything we’ve coaxed him into eating.) I made sure he understood that he was not in trouble but I also made it clear that I am adamant about eating. Remember just 5 or 6 weeks ago when he was eating everything in sight because of his meds? Now we’re facing the exact opposite side effect.

The docs have included Zantac to settle his stomach in hopes of getting him to eat more. They’ve also added Periactin, an antihistamine that actually works as an appetite stimulant. He used this 3 years ago when we were at the same point in his treatment. I didn’t see a benefit then, but it’s worth a try this time. I gave him the pill last night and told him what it does for him. As soon as he swallowed it he said, “It works! I’m hungry now!” That attitude held for about 5 teaspoons of spaghettios and that was it.

The situation is worrisome because the last time we went through this he ended up in the ER. His body ended up using up all of its protein stores and he nearly fell into a coma from low blood sugar.

We finally were able to meet with Jake Rivers the other day. He was in for his monthly check up. He and Ben played a couple of tricks on the nurses and found that they also have an interest in Pokemon in common!

Our new neighbor, Sean Dever, moved in the other day. His room is right next door to Ben’s. Ben brought him a bag full of presents as it was his 12th birthday. When we left the room he said to me that he didn’t expect Sean to be bald. I asked him if he understood that Sean has cancer too and his meds have the same effect as the meds Ben’s taking. He seemed to understand but just didn’t make the connection. It makes me wonder how lonely Ben must feel through this whole experience. He even told me that he felt that the longer he has to stay in the hospital, the more likely his friends will forget him.

He has another dressing change to his PICC line next Wednesday and he’s been worrying about it since last Wednesday. He asks everyone that comes in to check on him if it’s time to change the dressing. He’s still taking Paxil to help him with his anxiety, but some days nothing is enough to lessen his worries.

Prayers are the same, no fevers, recovery of counts, stronger spirit, happier days, sunshine on his face . . .please pray with us.


Thanks to everyone who came to visit this week and for all the great gifts you brought! Thanks you 1A for the never ending supply of cards and goodies. Thank you to the mom's who are keeping our stomachs full with the wonderful meals they've provided! And as always, thank you for the unceasing prayers! May you all feel God's presence everyday.

Love,
Belinda, Chris, Jeremy & Benjamin
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
And keep the following children in your prayers as well.

Sean Dever
Jake Rivers - relapsed ALL on May 24, 2005
Annie Coyle
William Olson
Kylie Barry
Gwen Mason
Gracie Mae Malloy
Andrew Vassil
Will Hennessy
Zach Hoechstetter
Merrill King
Jack Sanders
Brady Wolfe
Brady Scott
Holly Moore
Ian Rice
Sami Petrucciani


And for the angels who watch over us:

Jon Allmett - August 19, 2007
Sam Robb - June 25, 2007
Ethan Alain - April 28, 2001 - Aug. 3, 2005
Coulter Hampton - March 29, 2005
Haley Thompson - February 3, 2003 – December 19, 2004
Shelby Prescott - December 30,1998 - October 22, 2004
Carter Martin - November 20, 1996 - September 12, 2004
Alex Scott - August 1st, 2004

PAST NEWS:

Jeremy has a website! Hope to see you there!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
With the help of the following organizations, we are devoted to finding a cure:
CureSearch
CureSearch Athletics
Cure Childhood Cancer
The Leukemia Lymphoma Society

With the help of the following organizations, we are devoted to finding peace in every moment:
Make A Wish Foundation
Camp Sunshine
Lighthouse Family Retreat

Wednesday, September 12, 2007 8:46 PM CDT

Hi everyone,

Boy! What a day! Ben and I are exhausted! We counted that Ben had a total of 8 visitors today! And that's not counting the regular barrage of doctors and nurses that visit and poke at Ben on a daily basis. He was so busy, there was no time for a nap.

It was really fun but we over did it. All the while we were keeping company he kept spiking fevers and vomitting. Most of the time he was awake and happy but each visit was interrupted with queaziness or fatigue from the fevers.

His counts have fallen again so who knows when we'll be going home. The fevers are constant and starting to tire him out. He got a blood transfusion today and continues with the antibiotics and antifungal. Fortunately, he did not need the hypertension med.

He also had the dressing on his PICC line changed. They've got to do it every 7 days as precaution. He's been worrying about it since yesterday when he found out. Today he told me he wanted to just get it over with because he wanted it done before his friend, Matthew, came to visit. I thought it was very brave of him when he asked the nurse himself if she could do it this morning. The anxiety and fear that runs through his body during times like this is unbearable to even watch. I can't imagine how absolutely terrified he is. His whole body was shaking from fear. It's the tape that scares him, as you know. But I'm sure he feel so vulnerable as well. Once the tape was off, a Chloroseptic wash was applied and that stung. He cried and screamed but he braved it. Thanks, Nurse Joy for being so patient.

He's asleep finally. I hope you will help me pray that he has a restful night, that fevers subside and his counts recover. We're praying that we get to go home this weekend.

Oh, one good thing. . . I found out today that his next phase is outpatient. I thought we were only going to have a week at home before getting admitted again. Looks like we might have 2 or 3 instead!

Thanks to everyone who came to visit and for all the great gifts you brought! And as always, thank you for the unceasing prayers! May you all feel God's presence everyday.

Love,
Belinda, Chris, Jeremy & Benjamin
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
And keep the following children in your prayers as well.

Sean Dever
Jake Rivers - relapsed ALL on May 24, 2005
Annie Coyle
William Olson
Kylie Barry
Gwen Mason
Gracie Mae Malloy
Andrew Vassil
Will Hennessy
Zach Hoechstetter
Merrill King
Jack Sanders
Brady Wolfe
Brady Scott
Holly Moore
Ian Rice
Sami Petrucciani


And for the angels who watch over us:

Jon Allmett - August 19, 2007
Sam Robb - June 25, 2007
Ethan Alain - April 28, 2001 - Aug. 3, 2005
Coulter Hampton - March 29, 2005
Haley Thompson - February 3, 2003 – December 19, 2004
Shelby Prescott - December 30,1998 - October 22, 2004
Carter Martin - November 20, 1996 - September 12, 2004
Alex Scott - August 1st, 2004

PAST NEWS:

Jeremy has a website! Hope to see you there!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
With the help of the following organizations, we are devoted to finding a cure:
CureSearch
CureSearch Athletics
Cure Childhood Cancer
The Leukemia Lymphoma Society

With the help of the following organizations, we are devoted to finding peace in every moment:
Make A Wish Foundation
Camp Sunshine
Lighthouse Family Retreat

Tuesday, September 11, 2007 9:31 PM EST

Hi everyone,

Ben had a couple of more fevers today than normal. They've added a blood pressure medicine (procardia) when he needs it. His hypertension seems to coincide with the fevers. We've found his pattern: chills, nausea, fever spike. So now we know that as soon as the chills start, he can have zofran to head of the queaziness. The tylenol still has to wait until a temp of 101. He also got a bag of platelets today. He had a little bleeding in his mouth, nose and bottom so they decided to transfuse. His potassium has been low for the past couple of days so they've supplemented his fluids and his level has risen every day since.

He had some yogurt, bacon, pineapple, ravioli (Thanks, Mrs. Vassil!), 1 macadamia nut, cereal, baked chicken, garbanzo beans and an icee today. Much improved appetite from previous days!

I had a few serious talks with him today. We talked about the fact that we will need to change the dressing on his PICC line tomorrow and that brought some tears. We talked about when we might be able to go home and how quickly he'll have to return to the hospital for more chemo. That brought more tears. Then we talked about his port replacement. I told him that I wanted to see if the surgeon would put it in a different location on his chest so that it is out of the way when he plays. This brought the most tears. He said he wouldn't feel normal if it were in a different place. I tried to explain my position but his resistance grew. I conceded and he cried harder apologizing for being rude to me. Can you believe that? I assured him that he did nothing to warrant an apology but he just hugged me saying that he didn't mean to be mean.

He was able to sneak a plastic snake into our nurse practitioner's pocket. As she stood up and checked for her beeper, she screamed and flung the snake up in the air. Ben was in stitches. We tortured poor nurse Krissy as well. She is an easy target, unfortunately, and Ben and I got her everytime she came into the room.

By late afternoon his fever returned and he wore out quickly. He had a nice conversation on the phone with his friend, Trenton, which seemed to perk him up.

That's it! We're just hanging on and waiting.

Thanks again for everything! And as always, thank you for the unceasing prayers! May you all feel God's presence everyday.

Love,
Belinda, Chris, Jeremy & Benjamin
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
And keep the following children in your prayers as well.

Sean Dever
Jake Rivers - relapsed ALL on May 24, 2005
Annie Coyle
William Olson
Kylie Barry
Gwen Mason
Gracie Mae Malloy
Andrew Vassil
Will Hennessy
Zach Hoechstetter
Merrill King
Jack Sanders
Brady Wolfe
Brady Scott
Holly Moore
Ian Rice
Sami Petrucciani


And for the angels who watch over us:

Jon Allmett - August 19, 2007
Sam Robb - June 25, 2007
Ethan Alain - April 28, 2001 - Aug. 3, 2005
Coulter Hampton - March 29, 2005
Haley Thompson - February 3, 2003 – December 19, 2004
Shelby Prescott - December 30,1998 - October 22, 2004
Carter Martin - November 20, 1996 - September 12, 2004
Alex Scott - August 1st, 2004

PAST NEWS:

Jeremy has a website! Hope to see you there!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
With the help of the following organizations, we are devoted to finding a cure:
CureSearch
CureSearch Athletics
Cure Childhood Cancer
The Leukemia Lymphoma Society

With the help of the following organizations, we are devoted to finding peace in every moment:
Make A Wish Foundation
Camp Sunshine
Lighthouse Family Retreat

Monday, September 10, 2007 9:37 AM CDT

Hi everyone,

Sorry for the delay in updates. But there's really not much to report. Just more of the same. Ben's still fighting fevers although he seems to be getting used to them and playing right through 104 temps!

He's still on the antifungal and antibiotics. Hopefully one of them will kick in soon. The other big obstacle is his change in taste. The chemo has changed his tastebuds and he's having a difficult time finding something that he enjoys eating.

In the meantime, I've been meaning to say thanks to all of you who are helping us at this time. From rides for Jeremy to dinners for the family and not to mention all the gifts Ben's been getting. It all helps tremendously. I don't know how we'd handle this without you! I know some of you have been wanting to help with meals and haven't been called on yet. Maura, through all her chaos, is gratiously keeping track of all meals for us. If you'd like to get on the schedule for meals you can email her at davis4zoo@bellsouth.net. We feel we've found a family in what we thought was just a good group of friends. Thanks again for everything! And as always, thank you for the unceasing prayers! May you all feel God's presence everyday.

Love,
Belinda, Chris, Jeremy & Benjamin
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
And keep the following children in your prayers as well.

Sean Dever
Jake Rivers - relapsed ALL on May 24, 2005
Annie Coyle
William Olson
Kylie Barry
Gwen Mason
Gracie Mae Malloy
Andrew Vassil
Will Hennessy
Zach Hoechstetter
Merrill King
Jack Sanders
Brady Wolfe
Brady Scott
Holly Moore
Ian Rice
Sami Petrucciani


And for the angels who watch over us:

Jon Allmett - August 19, 2007
Sam Robb - June 25, 2007
Ethan Alain - April 28, 2001 - Aug. 3, 2005
Coulter Hampton - March 29, 2005
Haley Thompson - February 3, 2003 – December 19, 2004
Shelby Prescott - December 30,1998 - October 22, 2004
Carter Martin - November 20, 1996 - September 12, 2004
Alex Scott - August 1st, 2004

PAST NEWS:

Jeremy has a website! Hope to see you there!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
With the help of the following organizations, we are devoted to finding a cure:
CureSearch
CureSearch Athletics
Cure Childhood Cancer
The Leukemia Lymphoma Society

With the help of the following organizations, we are devoted to finding peace in every moment:
Make A Wish Foundation
Camp Sunshine
Lighthouse Family Retreat

Thursday, September 6, 2007 10:32 PM EST

Hi everyone,

OK,today was better although Ben still has a fever. Didn't do much of anything. We watched "Night at the Museum" (thank you Mrs. Hennessy!) and "Little Giants", had several quick visitors but mostly just hung out trying to get rid of the fever.

We talked with Dr. Shore, the Infectious Disease doc, who decided to go ahead with the antifungal meds. Ben started Voriconazole today along with another antibiotic, Meropenem, which replaces the Fortaz. So far so good - no side effects to be seen.

We also got a visit from Dr. Lew whom we haven't seen since Ben was admitted. He came to pay us a special visit. He assured us that Ben was par for the course and responding just as he'd anticipated which is a very good thing. No surprises. Well, I guess the broken port was a surprise, but the rest of it is relatively expected. He told us that we should expect to see counts starting to recover by end of next week.

In the meantime, when Ben's feeling better on Tylenol has has kept himself busy torturing the nurses! A friend has armed Ben with all things "creepy" to scare anyone who enters his room. When you least expect it, you may see a black rat perched on the IV machine, a spider resting on the soap dispenser, or if you're lucky you may find all of the above along with a couple of snakes in your pocket! Beware!

Thank you for the unceasing prayers! May you all feel God's presence everyday.

Love,
Belinda, Chris, Jeremy & Benjamin
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
And keep the following children in your prayers as well.

Sean Dever
Jake Rivers - relapsed ALL on May 24, 2005
Annie Coyle
William Olson
Kylie Barry
Gwen Mason
Gracie Mae Malloy
Andrew Vassil
Will Hennessy
Zach Hoechstetter
Merrill King
Jack Sanders
Brady Wolfe
Brady Scott
Holly Moore
Ian Rice
Sami Petrucciani


And for the angels who watch over us:

Jon Allmett - August 19, 2007
Sam Robb - June 25, 2007
Ethan Alain - April 28, 2001 - Aug. 3, 2005
Coulter Hampton - March 29, 2005
Haley Thompson - February 3, 2003 – December 19, 2004
Shelby Prescott - December 30,1998 - October 22, 2004
Carter Martin - November 20, 1996 - September 12, 2004
Alex Scott - August 1st, 2004

PAST NEWS:

Jeremy has a website! Hope to see you there!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
With the help of the following organizations, we are devoted to finding a cure:
CureSearch
CureSearch Athletics
Cure Childhood Cancer
The Leukemia Lymphoma Society

With the help of the following organizations, we are devoted to finding peace in every moment:
Make A Wish Foundation
Camp Sunshine
Lighthouse Family Retreat

Wednesday, September 5, 2007 11:26 PM EST

Hi everyone,

We had a long day so this will probably be pretty short.

Ben slept this morning until 9:30 giving him only 30 mins. to get some clear liquids in before his PICC placement. The rest of the morning, we watched tv and he kept asking me which arm they would put the line in. He was scared. He actually woke up telling me that he was scared.

Shortly before 1pm, Ben started to complain of hunger. They took us down to Interventional, where they do the sedated line placements and got Ben underway by 2:00. They used the same meds he would get in the twinkly star room for his LPs - Fentanyl and Propofol. I think knowing this eased his mind slightly but it surely eased mine. I knew how the stuff worked and I was a little less apprehensive. The doctor promised Ben "no owies" and he was right. The procedure took about 20 mins. and Ben only woke up a couple of times just to complain that he was hungry. The sedation doc did recommend that should Ben require sedation for another procedure that we use another anesthesia because this time around he required so much more Propofol than he'd ever had before.

They quickly brought Ben to the recovery room where we only stayed a few short minutes before being whisked away for the CT scan. Again, Ben cooperated fully. He was flat on his back with his hands above his head pretending he was on a ride at Disney World.

A half an hour later we were back in the room waiting the results. Clean scans. No fungal growth to be seen. The protocol however, for kids with fever, who are already on antibiotics, even showing clean scans, is to start them on anti-fungal meds anyway as a preventative measure. So, not sure what those meds are and how they will effect Ben's wellness but we start them tomorrow.

Last but not least, Ben languished over the fact that they would have to remove the IV line after the PICC was in place. Just like getting de-accessed, he's always been fearful of the tape they use to hold down these lines. He was worried all day that it would hurt. He tried to get nurse Joy to agree to take it out tomorrow but instead he agreed to take it out tonight after it got dark outside. So, he screamed and cried as Joy slowly removed the tape to accomodate Ben's wishes but after ten minutes of it he finally agreed to just get it over with, "OK, fine! Just do it." An so she did. I'm dreading having to tell him that we'll eventually have to remove the PICC too!

Now he's asleep but still battling a fever. Thank you for the unceasing prayers! May you all feel God's presence everyday.

Love,
Belinda, Chris, Jeremy & Benjamin
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
And keep the following children in your prayers as well.

Sean Dever
Jake Rivers - relapsed ALL on May 24, 2005
Annie Coyle
William Olson
Kylie Barry
Gwen Mason
Gracie Mae Malloy
Andrew Vassil
Will Hennessy
Zach Hoechstetter
Merrill King
Jack Sanders
Brady Wolfe
Brady Scott
Holly Moore
Ian Rice
Sami Petrucciani


And for the angels who watch over us:

Jon Allmett - August 19, 2007
Sam Robb - June 25, 2007
Ethan Alain - April 28, 2001 - Aug. 3, 2005
Coulter Hampton - March 29, 2005
Haley Thompson - February 3, 2003 – December 19, 2004
Shelby Prescott - December 30,1998 - October 22, 2004
Carter Martin - November 20, 1996 - September 12, 2004
Alex Scott - August 1st, 2004

PAST NEWS:

Jeremy has a website! Hope to see you there!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
With the help of the following organizations, we are devoted to finding a cure:
CureSearch
CureSearch Athletics
Cure Childhood Cancer
The Leukemia Lymphoma Society

With the help of the following organizations, we are devoted to finding peace in every moment:
Make A Wish Foundation
Camp Sunshine
Lighthouse Family Retreat

Tuesday, September 4, 2007 7:24 PM EST

Hi everyone,

Ben had a great day on Sunday. Just a family day. We put together legos, watched movies, played xbox and celebrated Mr. Will's birthday. Low key. Just what we needed.

On Monday we were off to a great start until we noticed Ben's port leaking again. The doctor ordered a dye study to examine the port and the flow of meds through it. It seems that the self-healing bubble that gets punctured by the needle everytime Ben is accessed has worn out. Anything that goes through his port flows excessively through the top and trails up the line for a short bit. Dr. Rapkin assured us that although the port is leaking, Ben did get all of his chemo last week.

So, soon after Ben braved the scheduled re-access of his port, he then had to sit still as they de-accessed him. The port is broken. We can't use it to administer anything. So in the next few weeks, whenever Ben's counts recover, we will schedule surgery to replace the port.

In the meantime . . . they had to insert an IV line in his hand. The whole process took about 6 hours. Four different nurses examined his arms for obvious veins and just couldn't find an easy one. They blew 3 veins before they finally located a good one on the top of his right wrist. By the time they got the line in place it was around 1am. Chris spent the night with Ben and woke up around 3am to find the nurses cleaning up a pool of blood they found due to a loose cap. They cleaned up and got a couple more hours of sleep.

We found out early this morning that the docs have decided that Ben will need a PICC line (Peripherally Inserted Central Catheter - say that 3 times fast!). The IV that he has now is just to delicate to push the amount of meds and fluids that Ben requires. The PICC will allow the same functionality as the port and can last a month or so. Fortunately, the docs have agreed that Ben can be sedated for the procedure to reduce his anxiety.

Today Ben spiked a fever again. Slept from about 11am to 3pm. He got a blood transfusion because his counts are so low and now he's playing Lego guys with Jeremy. He got some motrin and now he's feeling better. He and Jeremy are also torturing the nurses with some Warheads sour candy spray! Sorry, Joy and Holly!!

Please pray for Ben's comfort tomorrow. They will place the PICC line tomorrow at 1pm. Ask that the procedure goes easily and that Ben may find relief soon.

Thank your for the unceasing prayers! May you all feel God's presence everyday.

Love,
Belinda, Chris, Jeremy & Benjamin
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
And keep the following children in your prayers as well.

Sean Dever
Jake Rivers - relapsed ALL on May 24, 2005
Annie Coyle
William Olson
Kylie Barry
Gwen Mason
Gracie Mae Malloy
Andrew Vassil
Will Hennessy
Zach Hoechstetter
Merrill King
Jack Sanders
Brady Wolfe
Brady Scott
Holly Moore
Ian Rice
Sami Petrucciani


And for the angels who watch over us:

Jon Allmett - August 19, 2007
Sam Robb - June 25, 2007
Ethan Alain - April 28, 2001 - Aug. 3, 2005
Coulter Hampton - March 29, 2005
Haley Thompson - February 3, 2003 – December 19, 2004
Shelby Prescott - December 30,1998 - October 22, 2004
Carter Martin - November 20, 1996 - September 12, 2004
Alex Scott - August 1st, 2004

PAST NEWS:

Jeremy has a website! Hope to see you there!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
With the help of the following organizations, we are devoted to finding a cure:
CureSearch
CureSearch Athletics
Cure Childhood Cancer
The Leukemia Lymphoma Society

With the help of the following organizations, we are devoted to finding peace in every moment:
Make A Wish Foundation
Camp Sunshine
Lighthouse Family Retreat

Sunday, September 2, 2007 3:50 PM EST

Hi everyone,

All I can say is, "What a difference a Paxil makes!" Ben's mood on Friday was so much brighter than the days before. He was awake most of the day and even agreed to walk the halls a little. His back has been bothering him so his doctors have asked him to take a stroll every once in a while. He did 2 laps on the 3rd floor! He was looking forward all day to a visit from the Davis kids but I had to postpone it as we were informed that the IVIG the doctors orders to boost his immune system might produce a severe case of the chills. And that's exactly what happened.

He was playing an xbox game with Chris and all of a sudden he said he was cold. I looked over and he was shivering from head to toe but still playing the game! His teeth were chattering as nurse Joy pushed in the Demerol to counter act the side effect. The IVIG was stopped and Ben stopped shivering. He looked like he was in a trance and might fall asleep. About 10 minutes later he was wide awake. (He actually ended up beating Chris at the xbox game before his trance!) Ben's blood pressure was high going in to the IVIG then fell to a low pressure for a while (mid 90s over mid 70s). They administered his scheduled Fortaz and Vancomycin around 8pm.

Ben asked to watch "Home Alone 2" again so we popped some popcorn, got a big cup of water, turned off the lights and settled in. "The popcorn tastes funny" he said. I was surprised because it's one of his favorite foods. I asked him if he'd like to get a snack from the snack machine (ploy to get him walking a little more). He was in a great mood and agreed. We went all the way to the lobby where he bought chex mix, pop tarts and Lorna Dunes. Surely he had something that could satisfy his craving. He tried a bite of everything and it all seemed to taste funny. I think he's experiencing the unfortunate chemo side effect where his taste changes. So, he opted not to eat anything but talked at length about the pizza they serve every Friday at school. "Mom, you won't believe how good it is! It has this silky white cheese on it and, I don't mean to gross you out, but when you get to the bone (that would be the crust!), you can dip it in chocolate ice cream and it tastes sooooo good!" I thought about getting a pizza from school to surprise him but I'm afraid the chemo may make it taste bad as well.

The restarted the IVIG at around 11:30pm and ran it over 4 hours - a much slower rate. It was just about then that my brother, Toti, delivered Jeremy to Ben's room after the Falcon's game (Thanks Fr. Frank!) for a slumber party! Unfortunately, Ben was already asleep. He was fine and slept the rest of the night. We also started Ben on Zyprexa to help ease him into the idea that he will have to get re-accessed on Monday. It's a precaution the take to reduce the chance of infection.

Friday he woke up in a great mood. I'm happy that he's feeling so well I just wish it weren't due to the Paxil, but I'm sure it is. He's comfortable and easy to deal with. He's the same ole' Ben. He'll even let the nurses and docs examine his port site without much anxiety. Please pray that he remains in good spirits for the re-access tomorrow.

We got a surprise visit from Uncle Ruben - all the way from NY! He came bearing gifts and a promise of another xbox competitor. The Davis clan (sans Conor) came to visit right before lunch and Ben was elated. After an hour or so, they started to head out and Ben asked if Ryan could stay a while longer. They built and painted a Home Depot truck, watched a movie and played Pokemon stuff. Ryan's a great pal and protector to Ben.

Fr. Frank stopped by around 6pm for a quick visit and to deliver Holy Communion to us. Ben was happy to find out that he was exempt from having to attend mass today!

So, Ben is doing great and feeling great. We're done with chemo for this phase. We're only sticking around the hospital for his counts to recover. Please pray Ben stays infection free!

Thank your for the unceasing prayers! May you all feel God's presence everyday.

Love,
Belinda, Chris, Jeremy & Benjamin
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
And keep the following children in your prayers as well.

Sean Dever
Jake Rivers - relapsed ALL on May 24, 2005
Annie Coyle
William Olson
Kylie Barry
Gwen Mason
Gracie Mae Malloy
Andrew Vassil
Will Hennessy
Zach Hoechstetter
Merrill King
Jack Sanders
Brady Wolfe
Brady Scott
Holly Moore
Ian Rice
Sami Petrucciani


And for the angels who watch over us:

Jon Allmett - August 19, 2007
Sam Robb - June 25, 2007
Ethan Alain - April 28, 2001 - Aug. 3, 2005
Coulter Hampton - March 29, 2005
Haley Thompson - February 3, 2003 – December 19, 2004
Shelby Prescott - December 30,1998 - October 22, 2004
Carter Martin - November 20, 1996 - September 12, 2004
Alex Scott - August 1st, 2004

PAST NEWS:

Jeremy has a website! Hope to see you there!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
With the help of the following organizations, we are devoted to finding a cure:
CureSearch
CureSearch Athletics
Cure Childhood Cancer
The Leukemia Lymphoma Society

With the help of the following organizations, we are devoted to finding peace in every moment:
Make A Wish Foundation
Camp Sunshine
Lighthouse Family Retreat

Thursday, August 30, 2007 11:57 PM EST

Hmmm . . . where to start.

It was a pretty emotional day. I arrived at the hospital this morning expecting to see a much improved Benjamin. He was awake and playing with Legos but was still battling a fever and weariness from the chemo. The good news is that his appetite had increased slightly. Carole and I brought him his McDonald's breakfast order of hash browns and a sausage biscuit. I was happy that he finally felt up to eating. He only ate about a quarter of his food but, at this point, every little bit counts. Our friend Mrs. Lohnes stopped by and brought Ben a dozen donuts with a challenge to take a bite out of each one of them. What a great and fun idea! Ben was into it and took on the task. Donut after donut, he plugged away until they were all bitten! I thought he might pass out from exhaustion. A few minutes later he tapped me on the shoulder, pointed to a glazed donut and said, "Can I finish that one?!" "Absolutely" I said, "as long as I can have a chocolate one!"

Shortly after his donut marathon he lied down for a nap. Unfortunately, while Ben slept, he missed what may have been his most important "medicine" to date . . . a visit from Jake Rivers. Jake was on his way to his last chemo appointment at the clinic. It was the last day of his relapse therapy. He made his way into the room eager to see Ben and got caught in my clutches. I think I needed to see him as much as Ben did. He is a strong, intelligent, handsome young man. To many, he may seem to be a typical boy because of his healty appearance. And that's a shame. After catching only a glimpse of what he's had to endure, Jake is most assuredly not typical. He is remarkable.

I spent some time teary eyed with Elle and Brent. They offer me comfort that I can't find elsewhere as they have been with us since day one. I remembered my words to Ben yesterday and thought, "If they can do it, we can do it." We hugged and cried and wished each other well.

Ben finally woke up from his nap around 3pm. He was achey and tired. I noticed that his shirt was wet which he quickly wrote off as sweat. After further inspection, we decided that his line was leaking again. Fearful, he asked me if the nurse would have to change the dressing again. All I could say was "I hope not." The seal on the tape they use over the port is heavy duty to keep the site sterile so you can imagine how painful it would be to pull it off especially on such a sensitive area. When they pulled it off yesterday it already looked raw. I was not thrilled about what I suspected they'd decide to do.

The process of changing the dressing was horrible and Ben let everyone on the floor know about it. After it was done and he was able to calm himself he said, "Mommy, I don't care about anything except staying alive." Just writing this makes me feel as through my throat is closing. I gave him every encouraging word I could think of. But right now, I have no words.

Thank you, Jerfrey and Nikolas for stopping by. You are like brothers to Jeremy and Ben. I know they loved seeing you!

Ben got his last ARA-C yesterday morning. He's still on Fortaz and Vancomycin for six more days. He also started Paxil and a round of GCSF.

Thank your for the unceasing prayers! May you all feel God's presence everyday.

Love,
Belinda, Chris, Jeremy & Benjamin
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
And keep the following children in your prayers as well.

Sean Dever
Jake Rivers - relapsed ALL on May 24, 2005
Annie Coyle
William Olson
Kylie Barry
Gwen Mason
Gracie Mae Malloy
Andrew Vassil
Will Hennessy
Zach Hoechstetter
Merrill King
Jack Sanders
Brady Wolfe
Brady Scott
Holly Moore
Ian Rice
Sami Petrucciani


And for the angels who watch over us:

Jon Allmett - August 19, 2007
Sam Robb - June 25, 2007
Ethan Alain - April 28, 2001 - Aug. 3, 2005
Coulter Hampton - March 29, 2005
Haley Thompson - February 3, 2003 – December 19, 2004
Shelby Prescott - December 30,1998 - October 22, 2004
Carter Martin - November 20, 1996 - September 12, 2004
Alex Scott - August 1st, 2004

PAST NEWS:

Jeremy has a website! Hope to see you there!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
With the help of the following organizations, we are devoted to finding a cure:
CureSearch
CureSearch Athletics
Cure Childhood Cancer
The Leukemia Lymphoma Society

With the help of the following organizations, we are devoted to finding peace in every moment:
Make A Wish Foundation
Camp Sunshine
Lighthouse Family Retreat

Wednesday, August 29, 2007 10:29 PM EST

Hi all,
I think Ben had a better day today. He slept until 8:30am and seemed to get a restful sleep. Unfortunately, first thing on our list things to do was to change the dressing around his port. It seems that with the low platelettes he had some slight bleeding. Mixed with the dextrose that he's on constantly, he started to ooze from the port site. His pillow and sheets were stained and we knew he had to get platelettes today. Counts came back and showed a level of 13 so the transfusion was ordered.

Although he was not actively bleeding when he woke up it was enough of a scare for him to see the stain on his sheets to start crying. He really knows so much more that when he was first diagnosed. He told me "I'll never be able to live like the rest of my family." I thought I would fall apart right then. As he sobbed he said over and over "this is too much for me. I can't handle it anymore!" I've never felt so helpless in my life.

After we gotta quick bath and a dressing change I put him back in bed and positioned our laptop in front of him. I asked if I could show him something and he said okay but kept his eyes fixed on the tv. I pulled up some pictures of Jake Rivers. I explained to Ben that Jake is just about to finish the two year treatment that he has just started. I showed him pictures of Jake during treatment and how he looked so much like Ben does now. Then I showed him pictures of Jake today. Ben agreed that Jake was living just like the rest of his family does. I think he found some comfort in our discussion. Then I added, that there is only one day age difference between them. I said, "You guys are the same. So, if Jake could do this then you can do it." "No I can't !" was his reply. Then I pointed out that Jake actually went through his relapse therapy when he was 5 years old and Ben is 6. I said, "Are you telling me that a 5 year old is stronger than a 6 year old?" He sat us straighter and said meekly, "no. . ." Anyway, I did not get a definitive "Yes, I can do it" from him, but I think knowing Jake could handle all of this gave him some reassurance.

I mentioned yesterday that I was hoping to get the ok from the docs to put Ben back on Zyprexa to help him deal with his anxiety. Instead they refered us to the hospital psychiatrist. He agreed that with some therapy a little medication would do wonders for Ben. Right now he is so depressed that he doesn't even want to leave the room. So tomorrow we will start him on Paxil, an anti-depressant that will hopefully help him over this hump. For such a tiny little guy his worries are huge. Please pray that this gives him significant relief.

He asked me the other day if he would be getting anymore huge shots. From what what we can tell, today was the last of them. Ben cried and screamed as Chris held him but ultimately complied. As we showered him with words of gratitude for doing a good job and helping the nurse as she gave him the shot he only felt disappointment in himself for giving into his fear and errupting in tears and screams. He's a "pleaser" like his brother and felt that his behavior was unacceptable. We assured him that his actions were completely acceptable if not expected for such a painful experience but he was done listening. A couple of hours later he told me that he was relieved that his final huge shot was over. We were also happy to find out that the small, daily sub-Q shots will be administered through his port instead. YAY!

We got a visit from Mrs. Shu and Mrs. McCoy today, both are Q of A moms who have kids that Ben loves. They brought, again, more presents from his friends at school and Ben singled out Mrs. Shu as an easy target for a game of checkers. I'm so glad that they caught him when he was feeling good but as soon as they left, and after the shot, he got back into bed and fell into his tv zone mode.

We had another quick visitor, Fr. Frank, who stopped by to shoot the breeze and offer Ben a blessing. When he left Ben said, "Hmm, I wonder why he was here." I told him that he just came to visit. "Oh," he said, "that was nice."

So, I'm fully expecting Ben to feel more like himself tomorrow because that's how it turned out last week. Please pray that the fevers subside and that they were caused by the chemo rather than an infection. Also pray that Ben gets his appetite back soon. The docs have decided that if he is not eating more by Sunday they will then have to use a gastronasal tube for feeding.

Thank your for the unceasing prayers! May you all feel God's presence everyday.

Love,
Belinda, Chris, Jeremy & Benjamin
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
And keep the following children in your prayers as well.

Sean Dever
Jake Rivers - relapsed ALL on May 24, 2005
Annie Coyle
William Olson
Kylie Barry
Gwen Mason
Gracie Mae Malloy
Andrew Vassil
Will Hennessy
Zach Hoechstetter
Merrill King
Jack Sanders
Brady Wolfe
Brady Scott
Holly Moore
Ian Rice
Sami Petrucciani


And for the angels who watch over us:

Jon Allmett - August 19, 2007
Sam Robb - June 25, 2007
Ethan Alain - April 28, 2001 - Aug. 3, 2005
Coulter Hampton - March 29, 2005
Haley Thompson - February 3, 2003 – December 19, 2004
Shelby Prescott - December 30,1998 - October 22, 2004
Carter Martin - November 20, 1996 - September 12, 2004
Alex Scott - August 1st, 2004

PAST NEWS:

Jeremy has a website! Hope to see you there!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
With the help of the following organizations, we are devoted to finding a cure:
CureSearch
CureSearch Athletics
Cure Childhood Cancer
The Leukemia Lymphoma Society

With the help of the following organizations, we are devoted to finding peace in every moment:
Make A Wish Foundation
Camp Sunshine
Lighthouse Family Retreat

Tuesday, August 28, 2007 11:41 PM EST

Hi everyone,

Ben did ok today. He spiked a fever last night and it got up to 102 today. It would come down with tylenol but it's still pretty persistent. They gave him Fortz and Vancomyacin in case it is an infection, but it might just be a fever from the ARA-C. They're just playing it safe. He also got a transfusion early this afternoon and we were hoping it would give him a little spunk. I think the fever preempted any energy it may have given him. He slept most of the day. At around 3pm he was awake and watched "National Treasure" and "Goonies" back to back. Sue Schippers came by and gave Ben a laundry basket full of toys and treats from his 1st grade class and then some. The instructions were to open one present a day. Instead, I allowed him to open all of them. He was feeling up to it and it was the most interested he'd been in anything (other than the movies) all day.

His tooth is still bothering him but they won't pull it due to low platelettes. And they won't be giving him any platelettes unless his counts drop further or he starts bleeding from the tooth or from his port. (We noticed some dry blood around the port dressing this morning. It may have just come from when they accessed him yesterday but their keeping an eye on it.)

He didn't eat much of anything today other than a few pieces of candy. He's got some anxiety over his impending shots as well. I asked if he could go back on his Zyprexa which helped him so much during his steroid frenzy. The nurse is checking on it but doesn't think it will be a problem. I'm almost considering asking if he can just be on it during the rest of his stay. He is so sad having to be here and it's only the second day.

Please pray that Ben's fever is not from an infection. Also pray that we can find something to lift his spirits. As he puts it, "Cancer is the stupidest thing in the whole world!" And it's really getting him down.

Thanks for your continued support!

Love,
Belinda, Chris, Jeremy & Benjamin
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
And keep the following children in your prayers as well.

Sean Dever
Jake Rivers - relapsed ALL on May 24, 2005
Annie Coyle
William Olson
Kylie Barry
Gwen Mason
Gracie Mae Malloy
Andrew Vassil
Will Hennessy
Zach Hoechstetter
Merrill King
Jack Sanders
Brady Wolfe
Brady Scott
Holly Moore
Ian Rice
Sami Petrucciani


And for the angels who watch over us:

Jon Allmett - August 19, 2007
Sam Robb - June 25, 2007
Ethan Alain - April 28, 2001 - Aug. 3, 2005
Coulter Hampton - March 29, 2005
Haley Thompson - February 3, 2003 – December 19, 2004
Shelby Prescott - December 30,1998 - October 22, 2004
Carter Martin - November 20, 1996 - September 12, 2004
Alex Scott - August 1st, 2004

PAST NEWS:

Jeremy has a website! Hope to see you there!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
With the help of the following organizations, we are devoted to finding a cure:
CureSearch
CureSearch Athletics
Cure Childhood Cancer
The Leukemia Lymphoma Society

With the help of the following organizations, we are devoted to finding peace in every moment:
Make A Wish Foundation
Camp Sunshine
Lighthouse Family Retreat

Monday, August 27, 2007 10:59 PM EST

Hi everybody,
Ben and I checked into the hospital around 4:00 today. After all the worrying he did over the weekend about this long stay he was in a relatively good mood. I think he ultimately just gave in knowing that this was just something he was going to have to do and there was no way around it.

He got accessed very well and was extremely cooperative. We were told by Dr. Lew that his counts had dropped over the past week and would likely need a blood transfusion and platelettes over the next few days.

He complained about an earache that turned out to be fine. And he also has some pain due to a second loose tooth. After dinner tonite he asked me to go ahead and knock it out! Well, that kind of thing is so far out of my comfort zone that he ended up pleading with me. I told him to at least have one of the nurses do it. I went to the nurses station and found nurse Eliesha who he liked and helped us last week. She seemed willing to help us but reminded me that Ben's platelettes were low. She said as soon as he got platelettes she'd happily oblige. I ran back to the room to make sure Ben hadn't convinced anyone else to pull it!

Ok, that's it for now. Chris is with Ben tonite. I will take the day shift as well as cover Tuesday nite. Please keep praying.

Love,
Belinda, Chris, Jeremy & Benjamin
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
And keep the following children in your prayers as well.

Sean Dever
Jake Rivers - relapsed ALL on May 24, 2005
Annie Coyle
William Olson
Kylie Barry
Gwen Mason
Gracie Mae Malloy
Andrew Vassil
Will Hennessy
Zach Hoechstetter
Merrill King
Jack Sanders
Brady Wolfe
Brady Scott
Holly Moore
Ian Rice
Sami Petrucciani


And for the angels who watch over us:

Jon Allmett - August 19, 2007
Sam Robb - June 25, 2007
Ethan Alain - April 28, 2001 - Aug. 3, 2005
Coulter Hampton - March 29, 2005
Haley Thompson - February 3, 2003 – December 19, 2004
Shelby Prescott - December 30,1998 - October 22, 2004
Carter Martin - November 20, 1996 - September 12, 2004
Alex Scott - August 1st, 2004

PAST NEWS:

Jeremy has a website! Hope to see you there!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
With the help of the following organizations, we are devoted to finding a cure:
CureSearch
CureSearch Athletics
Cure Childhood Cancer
The Leukemia Lymphoma Society

With the help of the following organizations, we are devoted to finding peace in every moment:
Make A Wish Foundation
Camp Sunshine
Lighthouse Family Retreat

Saturday, August 25, 2007 1:12 AM EST

Hello again,
What an interesting week we've had. Ben spent Monday through Wednesday at the hospital receiving high dose ARA-C. He did as well as expected. The medicine drained him of his energy, made him nauseous and gave him a slight fever. On Wednesday right before we were discharged from the hospital, we broke the news to Ben that he needed to get one of those horrible IM (Itramuscular) shots of L-Asperinginase. Not what he wanted to hear. Our friend and nurse Sue Schippers made a special trip to the hospital to help Ben though it. He braved the pain but hated every second of it.

Wednesday night he was still a bit fatigued but by Thursday afternoon. He was bright-eyed and bushy tailed and ready for some fun. We ran a few errands that day but mostly spent time putting together his new Harry Potter Lego set (almost 1000 pieces and my fingers are killing me!)

Friday morning we got up early to attend the weekly mass at school. Our agreement with Ben was that if he was feeling well, he would at least attend the weekly school masses. He seemed to have forgotten the agreement and refused to go. Chris and I felt it was important enough to lay down the parental discipline and insist that he attend mass. He conceded but not without a fight over wearing his uniform. Again, we laid down the law and he pouted all the way to school but dressed according to code.

We got to church a few minutes late (because, you know, that's just how it is when you only live 2 minutes away!) and found a seat at the back of the church. Immediately 2 of Ben's friends spied him fromt he front of the church and spread the word quickly to the rest of the 1st grade class that Ben was in attendence. Ben enjoyed the attention. At the end of mass our principal dismissed each row by grade and left the 1st graders as last to say a special "hello" to their visitor, Ben. Boy, did he LOVE that!

As we drove away from church Ben aske me, "Do you think it's too late if I wanted to go to school today?" "Absolutely not" I said. After a quick call to the school about dress code regarding ballcap vs. dew rag, Ben was ready to go. In case you want to know, the school said that Ben could wear whatever he wanted as long as it made him comfortable coming to school. He packed his bookbag and we were off. Two minutes later we pulled up to the school. We saw some of the 1st graders as they headed off to the playground and they were all excited to see him. Ben's pace slowed and his body stiffened. I grabbed hold of his hand and we marched into the building.

He was greated very warmly by Mrs. Rex who spent the rest of her lunchtime showing Ben around the classroom. I left as soon as I knew he was comfortable - which didn't take very long.

He came home with Jeremy and was full of excitement.
I said, "Ben, how was school?"
"OK," he said.
"Did you have fun?"
"I guess."
"What did you do?"
"Nothing."
I was relieved. Typical "boy" answers! Those were the same answers he'd give me last year when he was feeling his best. I knew he had a great day.

So now we've got today and tomorrow for some fun. I'm going to try and get him to go to school Monday morning because he's not due to the clinic until 2:30. He will be receiving and identical treatment as last week with the addition of daily GSF shots. They're small sub-Q shots so hopefully they won't hurt as much. The balance of his three week stay there is so that the docs can keep an eye on him. It's during this time that he will become extremely suceptible to infection. Please pray that this week is uncommonly easy for him and that side effects are little to none. Dr. Lew said that the majority of kids get an infection during this phase. Please pray that Ben is one of the few that remains healthy and strong.

Love,
Belinda, Chris, Jeremy & Benjamin
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
And keep the following children in your prayers as well.

Sean Dever
Jake Rivers - relapsed ALL on May 24, 2005
Annie Coyle
William Olson
Kylie Barry
Gwen Mason
Gracie Mae Malloy
Andrew Vassil
Will Hennessy
Zach Hoechstetter
Merrill King
Jack Sanders
Brady Wolfe
Brady Scott
Holly Moore
Ian Rice
Sami Petrucciani


And for the angels who watch over us:

Jon Allmett - August 20, 2007
Sam Robb - June 25, 2007
Ethan Alain - April 28, 2001 - Aug. 3, 2005
Coulter Hampton - March 29, 2005
Haley Thompson - February 3, 2003 – December 19, 2004
Shelby Prescott - December 30,1998 - October 22, 2004
Carter Martin - November 20, 1996 - September 12, 2004
Alex Scott - August 1st, 2004

PAST NEWS:

Jeremy has a website! Hope to see you there!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
With the help of the following organizations, we are devoted to finding a cure:
CureSearch
CureSearch Athletics
Cure Childhood Cancer
The Leukemia Lymphoma Society

With the help of the following organizations, we are devoted to finding peace in every moment:
Make A Wish Foundation
Camp Sunshine
Lighthouse Family Retreat

Thursday, August 23, 2007 3:01 PM CDT

Hi,
We're home! Ben's feeling well and not looking forward to next week.

I'm a little tired myself, so I'll give you details tomorrow. Just wanted you to know that he's well and resting at home!

Thank you all for your constant prayers. Please keep them coming! This relapse therapy is so much more intense that we will certainly need the prayers to endure this. Also, please pray that God may receive into his Heavenly gates the awesome soul of Jon Allmett. A hero to Atlanta children suffering from cancer, Jon devoted his life to creating and performing music and shared his inspirational talent with many children in our community who suffer from life threatening diseases. Jeremy and Ben both absolutley love Jon's children's songs but found comfort in the man as well. He visited Ben in the hospital when he was first diagnosed and serenaded all the kids at Camp Sunshine where the boys were starstruck and mesmerized by his talent. He was a close friend of my sister, Betsy and will be grately missed by so very many.

Love,
Belinda, Chris, Jeremy & Benjamin
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
And keep the following children in your prayers as well.

Sean Dever
Jake Rivers - relapsed ALL on May 24, 2005
Annie Coyle
William Olson
Kylie Barry
Gwen Mason
Gracie Mae Malloy
Andrew Vassil
Will Hennessy
Zach Hoechstetter
Merrill King
Jack Sanders
Brady Wolfe
Brady Scott
Holly Moore
Ian Rice
Sami Petrucciani


And for the angels who watch over us:

Jon Allmett - August 19, 2007
Sam Robb - June 25, 2007
Ethan Alain - April 28, 2001 - Aug. 3, 2005
Coulter Hampton - March 29, 2005
Haley Thompson - February 3, 2003 – December 19, 2004
Shelby Prescott - December 30,1998 - October 22, 2004
Carter Martin - November 20, 1996 - September 12, 2004
Alex Scott - August 1st, 2004

PAST NEWS:

Jeremy has a website! Hope to see you there!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
With the help of the following organizations, we are devoted to finding a cure:
CureSearch
CureSearch Athletics
Cure Childhood Cancer
The Leukemia Lymphoma Society

With the help of the following organizations, we are devoted to finding peace in every moment:
Make A Wish Foundation
Camp Sunshine
Lighthouse Family Retreat

Thursday, August 23, 2007 3:01 PM CDT

Hi,
We're home! Ben's feeling well and not looking forward to next week.

I'm a little tired myself, so I'll give you details tomorrow. Just wanted you to know that he's well and resting at home!

Thank you all for your constant prayers. Please keep them coming! This relapse therapy is so much more intense that we will certainly need the prayers to endure this. Also, please pray that God may receive into his Heavenly gates the awesome soul of Jon Allmett. A hero to Atlanta children suffering from cancer, Jon devoted his life to creating and performing music and shared his inspirational talent with many children in our community who suffer from life threatening diseases. Jeremy and Ben both absolutley love Jon's children's songs but found comfort in the man as well. He visited Ben in the hospital when he was first diagnosed and serenaded all the kids at Camp Sunshine where the boys were starstruck and mesmerized by his talent. He was a close friend of my sister, Betsy and will be grately missed by so very many.

Love,
Belinda, Chris, Jeremy & Benjamin
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
And keep the following children in your prayers as well.

Sean Dever
Jake Rivers - relapsed ALL on May 24, 2005
Annie Coyle
William Olson
Kylie Barry
Gwen Mason
Gracie Mae Malloy
Andrew Vassil
Will Hennessy
Zach Hoechstetter
Merrill King
Jack Sanders
Brady Wolfe
Brady Scott
Holly Moore
Ian Rice
Sami Petrucciani


And for the angels who watch over us:

Jon Allmett - August 19, 2007
Sam Robb - June 25, 2007
Ethan Alain - April 28, 2001 - Aug. 3, 2005
Coulter Hampton - March 29, 2005
Haley Thompson - February 3, 2003 – December 19, 2004
Shelby Prescott - December 30,1998 - October 22, 2004
Carter Martin - November 20, 1996 - September 12, 2004
Alex Scott - August 1st, 2004

PAST NEWS:

Jeremy has a website! Hope to see you there!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
With the help of the following organizations, we are devoted to finding a cure:
CureSearch
CureSearch Athletics
Cure Childhood Cancer
The Leukemia Lymphoma Society

With the help of the following organizations, we are devoted to finding peace in every moment:
Make A Wish Foundation
Camp Sunshine
Lighthouse Family Retreat

Monday, August 20, 2007 11:26 PM EST

Hi,

Ben's asleep in his hospital bed and the high dose ARA-C is running. The doctors scheduled this hospital stay to keep an eye on him with this drug. He's had it before but not this high of a dose. He'll get it every 12 hours until Wenesday afternoon.

This past week was so great! Ben was feeling good and enjoying time with his friends. He had 2 visits from his "teacher on wheels", Mrs. Ascari and got a visit from his classroom teacher, Mrs. Rex. She brought a book full of notes, drawings and pictures from the first week of school. Ben LOVED it. I certainly hope Ben understands one day just how caring and wonderful his school is to him. Mrs. Spaeth who runs the front office even came over and surprised Ben with a Webkin!

Ben had his buddy, Ryan spend the night on Friday and we watched "High School Musical 2". So great! Ben decided that he likes 2 better than 1. The next morning they had a big breakfast and headed out to their flag football practice. Yes, Ben participated and loved every minute of it. Then he braved another 3 hours in the sun at Jeremy's football jamboree. Ben was really feeling like his old self again. On Sunday we'd planned a little party with a couple of his friends, but as we were leaving church he caught up with a few more friends and the guest list grew! He tried really hard to swim with a baseball cap on and struggled everytime it came off. He's still so self conscious about his hair loss. But by the end of the day, the cap got chucked to the side and replaced by uninhibited fun! Ben has a great group of friends who love him no matter what. Thanks, guys!

Today started with an early morning visit from Mrs. Davis, Caitlyn and Quinn to wish us luck at the hospital. Then Caitlyn helped Ben make his bed. Afterward, Ben and I had lunch with our special friend "Taffy" who came loaded with goodies for the hospital. She also took Ben shopping for Florida Gator stuff as directed by Fr. Frank. He was like a kid in a candy store. Actually, he was exactly like a kid in a sports memorabilia store! He LOVED it!

Fortunately, when we got to the clinic everything went quickly and we didn't have to wait for a bed like alot of kids do. We're in room 310 until Wednesday. He was a little hesitant about going and had a scowl on his face all the way from the clinic to the hospital. But as God would have it, one of our angels, Mrs. Schippers was at the hospital to greet us. She's a mom at QofA and a nurse at CHOA who just happened to be working the oncology floor when we checked in. She was also there when Ben was first diagnosed 3 1/2 years ago. That's actually how we met her. So, when Ben saw her today I saw the tension release in his shoulders. He happily followed her to the "treasure chest" and everything was fine. Thanks, Sue.

Thank you all for your constant prayers. Please keep them coming! This relapse therapy is so much more intense that we will certainly need the prayers to endure this. Also, please pray that God may receive into his Heavenly gates the awesome soul of Jon Allmett. A hero to Atlanta children suffering from cancer, Jon devoted his life to creating and performing music and shared his inspirational talent with many children in our community who suffer from life threatening diseases. Jeremy and Ben both absolutley love Jon's children's songs but found comfort in the man as well. He visited Ben in the hospital when he was first diagnosed and serenaded all the kids at Camp Sunshine where the boys were starstruck and mesmerized by his talent. He was a close friend of my sister, Betsy and will be grately missed by so very many.

Love,
Belinda, Chris, Jeremy & Benjamin
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
And keep the following children in your prayers as well.

Sean Dever
Jake Rivers - relapsed ALL on May 24, 2005
Annie Coyle
William Olson
Kylie Barry
Gwen Mason
Gracie Mae Malloy
Andrew Vassil
Will Hennessy
Zach Hoechstetter
Merrill King
Jack Sanders
Brady Wolfe
Brady Scott
Holly Moore
Ian Rice
Sami Petrucciani


And for the angels who watch over us:

Jon Allmett - August 19, 2007
Sam Robb - June 25, 2007
Ethan Alain - April 28, 2001 - Aug. 3, 2005
Coulter Hampton - March 29, 2005
Haley Thompson - February 3, 2003 – December 19, 2004
Shelby Prescott - December 30,1998 - October 22, 2004
Carter Martin - November 20, 1996 - September 12, 2004
Alex Scott - August 1st, 2004

PAST NEWS:

Jeremy has a website! Hope to see you there!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
With the help of the following organizations, we are devoted to finding a cure:
CureSearch
CureSearch Athletics
Cure Childhood Cancer
The Leukemia Lymphoma Society

With the help of the following organizations, we are devoted to finding peace in every moment:
Make A Wish Foundation
Camp Sunshine
Lighthouse Family Retreat

Thursday, August 16, 2007 8:43 AM CDT

Hi everyone,

So sorry this update is so late. I was waiting to hear back from the doctor regarding Ben's bone marrow asperate. We got the "ALL CLEAR" yesterday on both his bone marrow and his spinal fluid. Ben's holding strong!

This past week was so much more tolerable than previous weeks. The Zyprexa fixed the ups downs of the prednisone and Ben was feeling more like himself. The only thing missing was his constant smile. He has moments of silliness - signs of the real Ben - but for the most part he's tired and seems pretty sad. I know he realizes he's missing out on a lot of things and mainly because he's just so weak. He watched Jeremy pedal off on his bike last Tuesday on the first day of school. We'd used the close proximity to school as a selling point of our new house when we were trying to convince the boys that moving was going to be a good thing. They were both excited that they'd be able to ride their bikes to school and were looking forward to it. (Riding their bikes, not school!)Anyway, Ben seemed sad watching Jeremy ride off so I told him that he could do the same any day he wanted to go to school, "No, that's okay" he said, and walked into the house.

Mrs. Ascari came that same day to start school with Ben. He was nervous at first but quickly found his place. In an hour they covered, spelling, math, religion and read a book. He's very eager to learn and did his homework as soon as Mrs. Ascari left. We feel so completely blessed by the support of Queen of Angels. When Chris and I met with the Dr. Wood, the principal, shortly after Ben was diagnosed it was obvious that we made the right decision for the boys. She offered us everything under the sun to accomodate Ben and make his 1st grade year as productive and easy as possible. And our "Teacher On Wheels", Mrs. Ascari, could not be more enthusiastic about helping Ben. I can see a very special friendship developing. Thank you QofA!

We will try to involve Ben in school activities as much as possible. We tried to convince him to go to school for a couple of hours this week while he's feeling a little better. But he's still very self conscious about his hair loss. He asked me the other day if he'd get his hair back before Olympic Day at school. (That's the year end sporting challenge that the school puts on for the kids on the last day of school.) Last year Ben's team lost so he's determined to win this time around! I told him that most likely he'd still be bald at that time. Confidently he said, "That's okay. I'll probably still go that day because on Olympic Day we're allowed to wear hats." I see him sometimes as he catches a glimpse of himself in the bathroom mirror. My heart just sinks wondering what must be going through his mind. But as much as he dislikes what's happening, he seems to be accepting it. During times like these I realize that Ben has matured far beyond his age and I can't help but feel he's been completely cheated out of his childhood years.

We even went to try on a wig last week. Ben expressed an interest in one and we were willing to get him whatever he needed to feel more comfortable. The wig fitting, unfortunately, was a disaster. The salon ordered the wrong color wig and that started things off on a hugely sour note. Ben said that the wig was itchy, it didn't look like his hair and opted instead for baseball caps. I don't blame him. It wasn't ever going to look like anything other that a wig.

On a positive note, Ben is still loving having his friends over to the house. We tried visiting Trenton at his house last week and Ben just wasn't comfortable. Not to mention, he was still on his prednisone and craving shrimp every 3 minutes! So, we've decided instead, to have friends come and visit Ben here. He doesn't always have the energy to play with them and sometimes ends up taking a nap during their visit, but just knowing they're around lifts his spirits tremendously.

So, thank you all for your continued prayers for Ben. Thanks also to our friends who are taking care of the rest of us! Our stomachs are full, our yard is beautiful and we're smiling a bit more each day. New Pictures

Love,
Belinda, Chris, Jeremy & Benjamin
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
And keep the following children in your prayers as well.

Sean Dever
Jake Rivers - relapsed ALL on May 24, 2005
Annie Coyle
William Olson
Kylie Barry
Gwen Mason
Gracie Mae Malloy
Andrew Vassil
Will Hennessy
Zach Hoechstetter
Merrill King
Jack Sanders
Brady Wolfe
Brady Scott
Holly Moore
Ian Rice
Sami Petrucciani


And for the angels who watch over us:

Sam Robb - June 25, 2007
Ethan Alain - April 28, 2001 - Aug. 3, 2005
Coulter Hampton - March 29, 2005
Haley Thompson - February 3, 2003 – December 19, 2004
Shelby Prescott - December 30,1998 - October 22, 2004
Carter Martin - November 20, 1996 - September 12, 2004
Alex Scott - August 1st, 2004

PAST NEWS:

Jeremy has a website! Hope to see you there!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
With the help of the following organizations, we are devoted to finding a cure:
CureSearch
CureSearch Athletics
Cure Childhood Cancer
The Leukemia Lymphoma Society

With the help of the following organizations, we are devoted to finding peace in every moment:
Make A Wish Foundation
Camp Sunshine
Lighthouse Family Retreat

Thursday, August 9, 2007 8:04 AM EST

UPDATE:
Another clean CNS this week!!

Tuesday, August 7, 2007 7:15 AM EST
Remember how I told you that Ben loves rollercoasters? Well, his prednisone took us all for a ride for the past 2 weeks. It's unbelievable the havoc steroids wreak on the body and mind. And it's so unbearable for us to watch Ben suffer through it.

Nevermind the side effects of weight gain and increased appetite, Ben was ultimately put on Zyprexa, an antipsychotic drug to regulate his emotions. His outbursts were constant and harmful to himself. He would cry every minute of the day and tell me that he didn't understand why he was feeling the way he did. He didn't want to cry but the med had taken hold of him. For a week and a half we battled the prednisone. Ben couldn't even find much comfort in sleeping. Restless and aggrevated, he would often opt for the floor rather than his bed. He would walk around the house throwing and kicking objects in his way and slamming every door in his path not wanting help or consolation. One night, he came to me crying and said, "Mommy, I'm doing such odd things and I can't help it. This medicine is trying to make me a bad boy." I tried to hold him and he just pushed me away.

He woke up early one morning and came to the kitchen. He climbed up onto the island, curled up into a ball and started crying. "I just don't feel right. I need something to make me feel better." I asked what I could get him to make him feel better. Without hesitation he said, "A glass of wine." As much as I felt sorry for him, I had to smile. We argued for a good 10 minutes over the facts of why I couldn't give him any wine. He just cried and insisted that it would make him feel better. Finally, he conceded and said he'd settle for a beer. Instead, I mixed him a kid friendly cocktail of grape juice and sprite and served it to him in a wine glass. He was satisfied.

By the time we had the Zyprexa on board the Ativan had stopped working completely and Ben was miserable. The first few days of the Zyprexa helped to lessen his aggression but it also made him so drowsy that the times he was awake he only had enough energy to eat and would go right back to sleep. He wasn't really interested in any kind of physical activity because he was so weak. He tried swimming a little the other day but couldn't make it back to the side of the pool when he was in the deep end. He tried to play wiffleball with some of his friends but the heat exhausted him instantly. I'm happy that he still wants his friends around though. Last Saturday Ben was asleep on the couch in the basement while the kids were running around. I tried to pick him up to bring him to his room where it was quiet. He refused and said he wanted to be downstairs. Although he couldn't muster up the energy to play or even wake up, he still wanted to be around his friends.

Through all of this, Ben's hair has fallen out. He crawled in my lap one night and hung on. I asked what was bothering him and he said, "I really don't want to lose my hair." I asked him if he'd noticed that it was already coming out and he nodded. I assured him that his friends would not make fun of him and that many people choose to be bald. He cried a few tears and left to play with his legos. On Sunday when he was antsy to get out of the house, I took him to Kohl's since I had some shopping to do anyway. I pushed him around in a cart because he was feeling pretty weak. Without realizing what I was doing, I parked him right in front of a mirror. After checking out a pair of shoes for Jeremy I turned and saw him just has he hung his head. He'd gotten a good long look at himself. I gave him a hug but he said he was alright. He's one tough kid.

His cravings have ranged from cheeseburgers to fetuccini alfredo, from shrimp to my mom's pancit (Filipino noodle dish - good thing she was here to make it for him!) and from chicken pot pie to pinwheel sandwhiches. He demands them at all hours of the day and consumes at least 3 times as much as he normally would. He's gained 8 pounds in the last week. The LP yesterday went well. We got an early appointment and were done in record time. Ben even suggested that we bring some pinwheel sandwiches to the clinic for all the nurses to share. Of course there was one unfortunate incident. When Ben comes out of his anesthesia he is hungry from fasting since the night before. Coupled with his steroid, this time around he was ravenous! He grabbed the hot dog that we'd picked up on the way to the clinic and started to devour it. It always scares me anyway when he eats after an LP because he has to be lying down for 30 minutes. We keep a pretty close eye on him but this time he got us - he choked on his hot dog. He just stopped chewing and his eyes grew big. I called out his name a couple of times and realized what was happening. I pounded on his back and fished out the food from his mouth. My mom ran to get the nurse. Fortunately, he bagan coughing and then he cried because he wanted the rest of his hot dog. I think I need a glass of wine!

So you see, alot of twists and turns this week and a pretty close call. Nothing like a rollercoaster to keep life exciting! A conversation I had yesterday with Ben gave me that final descent pit in my stomach kind of feeling. He said, "You know, mommy. When I get to heaven I'm going to wish that your daddy can come back to earth and I can come back to earth." (Plunge) "Because before you enter the gates of heaven you get one wish, right?" Holding back the tears I said, "I'm not really sure about that." Ben nodded his head and said, "I'm sure we do."

Thank you all for your continued prayers. Thanks also to the families who have brought us dinner on our clinic days. They are delicious and so absolutely appreciated!

Love,
Belinda, Chris, Jeremy & Benjamin
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
And keep the following children in your prayers as well.

Sean Dever
Jake Rivers - relapsed ALL on May 24, 2005
Annie Coyle
William Olson
Kylie Barry
Gwen Mason
Gracie Mae Malloy
Andrew Vassil
Will Hennessy
Zach Hoechstetter
Merrill King
Jack Sanders
Brady Wolfe
Brady Scott
Holly Moore
Ian Rice
Sami Petrucciani


And for the angels who watch over us:

Sam Robb - June 25, 2007
Ethan Alain - April 28, 2001 - Aug. 3, 2005
Coulter Hampton - March 29, 2005
Haley Thompson - February 3, 2003 – December 19, 2004
Shelby Prescott - December 30,1998 - October 22, 2004
Carter Martin - November 20, 1996 - September 12, 2004
Alex Scott - August 1st, 2004

PAST NEWS:

Jeremy has a website! Hope to see you there!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
With the help of the following organizations, we are devoted to finding a cure:
CureSearch
CureSearch Athletics
Cure Childhood Cancer
The Leukemia Lymphoma Society

With the help of the following organizations, we are devoted to finding peace in every moment:
Make A Wish Foundation
Camp Sunshine
Lighthouse Family Retreat

Tuesday, August 7, 2007 7:15 AM EST

Remember how I told you that Ben loves rollercoasters? Well, his prednisone took us all for a ride for the past 2 weeks. It's unbelievable the havoc steroids wreak on the body and mind. And it's so unbearable for us to watch Ben suffer through it.

Nevermind the side effects of weight gain and increased appetite, Ben was ultimately put on Zyprexa, an antipsychotic drug to regulate his emotions. His outbursts were constant and harmful to himself. He would cry every minute of the day and tell me that he didn't understand why he was feeling the way he did. He didn't want to cry but the med had taken hold of him. For a week and a half we battled the prednisone. Ben couldn't even find much comfort in sleeping. Restless and aggrevated, he would often opt for the floor rather than his bed. He would walk around the house throwing and kicking objects in his way and slamming every door in his path not wanting help or consolation. One night, he came to me crying and said, "Mommy, I'm doing such odd things and I can't help it. This medicine is trying to make me a bad boy." I tried to hold him and he just pushed me away.

He woke up early one morning and came to the kitchen. He climbed up onto the island, curled up into a ball and started crying. "I just don't feel right. I need something to make me feel better." I asked what I could get him to make him feel better. Without hesitation he said, "A glass of wine." As much as I felt sorry for him, I had to smile. We argued for a good 10 minutes over the facts of why I couldn't give him any wine. He just cried and insisted that it would make him feel better. Finally, he conceded and said he'd settle for a beer. Instead, I mixed him a kid friendly cocktail of grape juice and sprite and served it to him in a wine glass. He was satisfied.

By the time we had the Zyprexa on board the Ativan had stopped working completely and Ben was miserable. The first few days of the Zyprexa helped to lessen his aggression but it also made him so drowsy that the times he was awake he only had enough energy to eat and would go right back to sleep. He wasn't really interested in any kind of physical activity because he was so weak. He tried swimming a little the other day but couldn't make it back to the side of the pool when he was in the deep end. He tried to play wiffleball with some of his friends but the heat exhausted him instantly. I'm happy that he still wants his friends around though. Last Saturday Ben was asleep on the couch in the basement while the kids were running around. I tried to pick him up to bring him to his room where it was quiet. He refused and said he wanted to be downstairs. Although he couldn't muster up the energy to play or even wake up, he still wanted to be around his friends.

Through all of this, Ben's hair has fallen out. He crawled in my lap one night and hung on. I asked what was bothering him and he said, "I really don't want to lose my hair." I asked him if he'd noticed that it was already coming out and he nodded. I assured him that his friends would not make fun of him and that many people choose to be bald. He cried a few tears and left to play with his legos. On Sunday when he was antsy to get out of the house, I took him to Kohl's since I had some shopping to do anyway. I pushed him around in a cart because he was feeling pretty weak. Without realizing what I was doing, I parked him right in front of a mirror. After checking out a pair of shoes for Jeremy I turned and saw him just has he hung his head. He'd gotten a good long look at himself. I gave him a hug but he said he was alright. He's one tough kid.

His cravings have ranged from cheeseburgers to fetuccini alfredo, from shrimp to my mom's pancit (Filipino noodle dish - good thing she was here to make it for him!) and from chicken pot pie to pinwheel sandwhiches. He demands them at all hours of the day and consumes at least 3 times as much as he normally would. He's gained 8 pounds in the last week. The LP yesterday went well. We got an early appointment and were done in record time. Ben even suggested that we bring some pinwheel sandwiches to the clinic for all the nurses to share. Of course there was one unfortunate incident. When Ben comes out of his anesthesia he is hungry from fasting since the night before. Coupled with his steroid, this time around he was ravenous! He grabbed the hot dog that we'd picked up on the way to the clinic and started to devour it. It always scares me anyway when he eats after an LP because he has to be lying down for 30 minutes. We keep a pretty close eye on him but this time he got us - he choked on his hot dog. He just stopped chewing and his eyes grew big. I called out his name a couple of times and realized what was happening. I pounded on his back and fished out the food from his mouth. My mom ran to get the nurse. Fortunately, he bagan coughing and then he cried because he wanted the rest of his hot dog. I think I need a glass of wine!

So you see, alot of twists and turns this week and a pretty close call. Nothing like a rollercoaster to keep life exciting! A conversation I had yesterday with Ben gave me that final descent pit in my stomach kind of feeling. He said, "You know, mommy. When I get to heaven I'm going to wish that your daddy can come back to earth and I can come back to earth." (Plunge) "Because before you enter the gates of heaven you get one wish, right?" Holding back the tears I said, "I'm not really sure about that." Ben nodded his head and said, "I'm sure we do."

Thank you all for your continued prayers. Thanks also to the families who have brought us dinner on our clinic days. They are delicious and so absolutely appreciated!

Love,
Belinda, Chris, Jeremy & Benjamin
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
And keep the following children in your prayers as well.

Sean Dever
Jake Rivers - relapsed ALL on May 24, 2005
Annie Coyle
William Olson
Kylie Barry
Gwen Mason
Gracie Mae Malloy
Andrew Vassil
Will Hennessy
Zach Hoechstetter
Merrill King
Jack Sanders
Brady Wolfe
Brady Scott
Holly Moore
Ian Rice
Sami Petrucciani


And for the angels who watch over us:

Sam Robb - June 25, 2007
Ethan Alain - April 28, 2001 - Aug. 3, 2005
Coulter Hampton - March 29, 2005
Haley Thompson - February 3, 2003 – December 19, 2004
Shelby Prescott - December 30,1998 - October 22, 2004
Carter Martin - November 20, 1996 - September 12, 2004
Alex Scott - August 1st, 2004

PAST NEWS:

Jeremy has a website! Hope to see you there!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
With the help of the following organizations, we are devoted to finding a cure:
CureSearch
CureSearch Athletics
Cure Childhood Cancer
The Leukemia Lymphoma Society

With the help of the following organizations, we are devoted to finding peace in every moment:
Make A Wish Foundation
Camp Sunshine
Lighthouse Family Retreat

Wednesday, August 1, 2007 10:58 AM CDT

UPDATE:

The pathology report confirms Ben's second consecutive clean CNS. He is officially in second remission!


Monday, July 30, 2007
So . . .

Ben's headaches started to subside over the weekend although his energy was close to nil. We picked up his friend, Andrew, at church for a improptu play date and Ben felt the need to walk home to show Andrew just how close our new home is to school and church. Chris went with the two boys and after about 15 minutes of walking they decided to get a quick bite to eat at Wendy's before the final approach. I got a call about 20 minutes later requesting a ride home. Ben was exhausted and ended up taking an 1 1/2 hour nap while Andrew played with Jeremy and his friend.

When he woke he was not in a great mood and I decided to take Andrew home before Ben scared him off. On our way back from Andrew's house, Ben suggested that maybe he shouldn't have any more play dates until after his steroid round is over. I hate that he came to that realization himself. It just makes it more apparent to me how much he is fighting.

We got scheduled for an early LP this morning. Chris dropped Jeremy off at the Green's house and met Ben and I at the clinic. We ended up getting into the procedure room around 9:00 and Ben was ready to go. He was second in line for an LP and as he heard the docs and nurses stirring after finishing with the first patient, he very politely but very loudly yelled out, "Exuse me! Can we get started here?!" Purely steroid induced, his hunger is also raging. He is now opting for a hot dog, cheeseburger and mac and cheese for his post procedure snack. Gone are the days of the blueberry muffins and funions. So, once again, he sent Chris to the hospital cafeteria. Of course, they were still only servering breakfast so Chris had to coax the deli owner on the ground floor of the clinic to prepare a hot dog for Ben.

The procedure went well and they wheeled Ben, bed and all, into the infusion room where he received a dose of vincristine and PEG. While he lied there eating his hot dog (he has to lie flat for 30 mins. after and LP) I knelt down by his bed to help him and saw that the sheets were dusted with Ben's hair. It's beginning to fall out. A ton of bricks. It's really happening. We're really doing this all over again. Big, huge sigh - trying not to cry.

He ate his hot dog and sent Chris out for a second. After a while the nurse came in to hook him up to the IV pump for his chemo. She pulled back on the syringe to see if there was blood return and did not see anything. She looked and saw that the needle had partially fallen out of his port. She braced him and pushed it firmly back into place. Uh, no, Ben did not like that. He screamed in pain. The fear is that if the chemo does not go into the port and instead in or onto the tissue it will cause a sever burn. So, panicked over that, I insisted that Ben sit up for the entire 1 1/2 hour infusion of the PEG. I did not want to risk pulling that needle out while the chemo was being administered. We sat on the bed together and watched Sponge Bob. Fortunately, he fell asleep on my shoulder and remained still for the entire infusion.

We were done uneventfully by 1pm and made our way to Toys R Us. An LP always deserves some kind of treat afterward. This time it was a Star Wars lego set and a couple of Pokemon things. He slept again in the car on the ride to pick up Jeremy. He tried as best as he could to hang out with Jeremy and the Green boys when we got there. He even told me early that morning that after the clinic he wanted me to take him to the Green's house and just leave him! He's a big kid and just doesn't need me around all the time. But it didn't happen. His energy was zapped. We were there for about an hour but Ben was out of it the whole time. He fell asleep in the car and when we got home, slept for several hours. Then he woke up for an hour, cracked me up with his teasing then took another nap. After a quick battle with his Star Wars lego guys, he's back in bed and probably for the rest of the night.

On the lighter side . . . initial test of Ben's CNS show clear fluid! We should hear by Wednesday if the pathologist agrees. Please pray. Dr. Lew is happy with Ben's response and feels comfortable with the road we've chosen. Ben will start two new meds, Clotrimazole for the thrush in his mouth he's developed with prolonged use of the steroid and Zyprexa instead of the Ativan to help control his emotions without feeling loopy.

Thanks again to all of you. You're prayers are being felt every day. And thanks to all of Ben's friends who couldn't make it to the "Buzz Off" and shaved their heads anyway! Ben's truly has a great group of friends.

Love,
Belinda, Chris, Jeremy & Benjamin
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
And keep the following children in your prayers as well.

Sean Dever
Jake Rivers - relapsed ALL on May 24, 2005
Annie Coyle
William Olson
Kylie Barry
Gwen Mason
Gracie Mae Malloy
Andrew Vassil
Will Hennessy
Zach Hoechstetter
Merrill King
Jack Sanders
Brady Wolfe
Brady Scott
Holly Moore
Ian Rice
Sami Petrucciani


And for the angels who watch over us:

Sam Robb - June 25, 2007
Ethan Alain - April 28, 2001 - Aug. 3, 2005
Coulter Hampton - March 29, 2005
Haley Thompson - February 3, 2003 – December 19, 2004
Shelby Prescott - December 30,1998 - October 22, 2004
Carter Martin - November 20, 1996 - September 12, 2004
Alex Scott - August 1st, 2004

PAST NEWS:

Jeremy has a website! Hope to see you there!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
With the help of the following organizations, we are devoted to finding a cure:
CureSearch
CureSearch Athletics
Cure Childhood Cancer
The Leukemia Lymphoma Society

With the help of the following organizations, we are devoted to finding peace in every moment:
Make A Wish Foundation
Camp Sunshine
Lighthouse Family Retreat

Monday, July 30, 2007 10:50 PM EST

So . . .

Ben's headaches started to subside over the weekend although his energy was close to nil. We picked up his friend, Andrew, at church for a improptu play date and Ben felt the need to walk home to show Andrew just how close our new home is to school and church. Chris went with the two boys and after about 15 minutes of walking they decided to get a quick bite to eat at Wendy's before the final approach. I got a call about 20 minutes later requesting a ride home. Ben was exhausted and ended up taking an 1 1/2 hour nap while Andrew played with Jeremy and his friend.

When he woke he was not in a great mood and I decided to take Andrew home before Ben scared him off. On our way back from Andrew's house, Ben suggested that maybe he shouldn't have any more play dates until after his steroid round is over. I hate that he came to that realization himself. It just makes it more apparent to me how much he is fighting.

We got scheduled for an early LP this morning. Chris dropped Jeremy off at the Green's house and met Ben and I at the clinic. We ended up getting into the procedure room around 9:00 and Ben was ready to go. He was second in line for an LP and as he heard the docs and nurses stirring after finishing with the first patient, he very politely but very loudly yelled out, "Exuse me! Can we get started here?!" Purely steroid induced, his hunger is also raging. He is now opting for a hot dog, cheeseburger and mac and cheese for his post procedure snack. Gone are the days of the blueberry muffins and funions. So, once again, he sent Chris to the hospital cafeteria. Of course, they were still only servering breakfast so Chris had to coax the deli owner on the ground floor of the clinic to prepare a hot dog for Ben.

The procedure went well and they wheeled Ben, bed and all, into the infusion room where he received a dose of vincristine and PEG. While he lied there eating his hot dog (he has to lie flat for 30 mins. after and LP) I knelt down by his bed to help him and saw that the sheets were dusted with Ben's hair. It's beginning to fall out. A ton of bricks. It's really happening. We're really doing this all over again. Big, huge sigh - trying not to cry.

He ate his hot dog and sent Chris out for a second. After a while the nurse came in to hook him up to the IV pump for his chemo. She pulled back on the syringe to see if there was blood return and did not see anything. She looked and saw that the needle had partially fallen out of his port. She braced him and pushed it firmly back into place. Uh, no, Ben did not like that. He screamed in pain. The fear is that if the chemo does not go into the port and instead in or onto the tissue it will cause a sever burn. So, panicked over that, I insisted that Ben sit up for the entire 1 1/2 hour infusion of the PEG. I did not want to risk pulling that needle out while the chemo was being administered. We sat on the bed together and watched Sponge Bob. Fortunately, he fell asleep on my shoulder and remained still for the entire infusion.

We were done uneventfully by 1pm and made our way to Toys R Us. An LP always deserves some kind of treat afterward. This time it was a Star Wars lego set and a couple of Pokemon things. He slept again in the car on the ride to pick up Jeremy. He tried as best as he could to hang out with Jeremy and the Green boys when we got there. He even told me early that morning that after the clinic he wanted me to take him to the Green's house and just leave him! He's a big kid and just doesn't need me around all the time. But it didn't happen. His energy was zapped. We were there for about an hour but Ben was out of it the whole time. He fell asleep in the car and when we got home, slept for several hours. Then he woke up for an hour, cracked me up with his teasing then took another nap. After a quick battle with his Star Wars lego guys, he's back in bed and probably for the rest of the night.

On the lighter side . . . initial test of Ben's CNS show clear fluid! We should hear by Wednesday if the pathologist agrees. Please pray. Dr. Lew is happy with Ben's response and feels comfortable with the road we've chosen. Ben will start two new meds, Clotrimazole for the thrush in his mouth he's developed with prolonged use of the steroid and Zyprexa instead of the Ativan to help control his emotions without feeling loopy.

Thanks again to all of you. You're prayers are being felt every day. And thanks to all of Ben's friends who couldn't make it to the "Buzz Off" and shaved their heads anyway! Ben's truly has a great group of friends.

Love,
Belinda, Chris, Jeremy & Benjamin
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
And keep the following children in your prayers as well.

Sean Dever
Jake Rivers - relapsed ALL on May 24, 2005
Annie Coyle
William Olson
Kylie Barry
Gwen Mason
Gracie Mae Malloy
Andrew Vassil
Will Hennessy
Zach Hoechstetter
Merrill King
Jack Sanders
Brady Wolfe
Brady Scott
Holly Moore
Ian Rice
Sami Petrucciani


And for the angels who watch over us:

Sam Robb - June 25, 2007
Ethan Alain - April 28, 2001 - Aug. 3, 2005
Coulter Hampton - March 29, 2005
Haley Thompson - February 3, 2003 – December 19, 2004
Shelby Prescott - December 30,1998 - October 22, 2004
Carter Martin - November 20, 1996 - September 12, 2004
Alex Scott - August 1st, 2004

PAST NEWS:

Jeremy has a website! Hope to see you there!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
With the help of the following organizations, we are devoted to finding a cure:
CureSearch
CureSearch Athletics
Cure Childhood Cancer
The Leukemia Lymphoma Society

With the help of the following organizations, we are devoted to finding peace in every moment:
Make A Wish Foundation
Camp Sunshine
Lighthouse Family Retreat

Wednesday, July 25, 2007 10:53 PM EST

Just a quick update. We got a call from the clinic today. Further evaluation of Ben's spinal fluid confirms a clean CNS!!! One more to go and we're in remission!

Keep praying!

----------------------
Thursday, July 26, 2007 12:53 PM EST

Boy, what a time we had!!
Ben's haircut party was yesterday and at last count, I think we shaved a total of 16 heads! Thank you, Cori, for setting up our "barber shop" and for showing me the ropes! Andrew, Reagan and Jeremy (other than his mohawk)shaved their heads as short as Ben's. But the overall winner was "Mr. Eikey" (Eric) who went "no guard" just for Ben!

We timed the boys swimming laps before and after their haircuts. For those boys who we could find after their haircuts, here are their results:

Ben:
34sec./30sec.
Trenton:
28 sec./25sec.
Brian:
27sec./25sec.
Jeremy:
22sec./20sec.
Ryan:
25sec./23sec.

Thank you to everyone who participated. Ben had a great time and enjoyed having his haircut with his friends by his side.

Yesterday I gave Ben a recently perscribed dose of Atavan to help ease the emotional outbursts the Prednisone creates. Unfortunately, by the end of the party, the Atavan started to wear off but was too early for another dose. At one point, Ben came to me crying that this party was "the worst party ever" because we'd momentarily lost a few of our guests to our neighbors who were throwing water balloons. Then he was playing "water baseball" with the guys and, out of the blue, got one of his spinal headaches. They seem comparable to migraines from what my friends tell me. And Ben adds the description that it feels as though his brain is burning. After about 10mins. we had that under control but emotionally he was gone. He went back to the baseball game and didn't want to cooperate. My heart sank as he stood on the diving board in front of all of his friends, crying uncontrollably. I picked him up and brought him inside. The medicine also brings out paranoia. He said that no one wanted to play with him and that all day long his friends ignored him. I know that none of that was true but I was not about to get into an explaination with him just then.

Needless to say, after about 4 hrs. of fun, the party ended abruptly with everyone tip toeing out not to distrub Ben anymore than he already was. Thank you, guys, for understanding. Thanks especially to Brian, Colin and Ryan who we promised could spend the night but had to retract the offer when Ben's emotions spun out of control.

I called the clinic today and they upped his Atavan to 1mg/6 hrs. About an hour after giving it to him this morning, he lied down for a 30 min. nap. So far so good. We're just going to have a quite day today.

Thanks again to all of you. You're prayers are being felt every day.

Here are the pictures from the party!

Love,
Belinda, Chris, Jeremy & Benjamin
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
And keep the following children in your prayers as well.

Sean Dever
Jake Rivers - relapsed ALL on May 24, 2005
Annie Coyle
William Olson
Kylie Barry
Gwen Mason
Gracie Mae Malloy
Andrew Vassil
Will Hennessy
Zach Hoechstetter
Merrill King
Jack Sanders
Brady Wolfe
Brady Scott
Holly Moore
Ian Rice
Sami Petrucciani


And for the angels who watch over us:

Sam Robb - June 25, 2007
Ethan Alain - April 28, 2001 - Aug. 3, 2005
Coulter Hampton - March 29, 2005
Haley Thompson - February 3, 2003 – December 19, 2004
Shelby Prescott - December 30,1998 - October 22, 2004
Carter Martin - November 20, 1996 - September 12, 2004
Alex Scott - August 1st, 2004

PAST NEWS:

Jeremy has a website! Hope to see you there!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
With the help of the following organizations, we are devoted to finding a cure:
CureSearch
CureSearch Athletics
Cure Childhood Cancer
The Leukemia Lymphoma Society

With the help of the following organizations, we are devoted to finding peace in every moment:
Make A Wish Foundation
Camp Sunshine
Lighthouse Family Retreat

Tuesday, July 24, 2007 9:46 PM EST

Hi everyone,

Everything went well yesterday although Ben had a little trouble with the timing of the LP. He was scheduled for a 10am procedure and usually that's not a big deal for him. He even told my mom who was with us for a few days that he's used to not eating before his procedures. Well, that's true when he's not on steroid which make him ravenous. By 10:30 he was crying and screaming for food. Fortunately his port cooperated and we were not delayed.

Dr. Lew told us that the fluid they took last week showed a few cells but it was difficult to tell what they were because the meds had already gotten to them and they had begun to degenerate. So, we may never know, if all goes well, if Ben had any AML cells in his CNS or not. We prefer NOT!

Before the procedure began Ben put in a lunch request of a hot dog w/ketchup and mustard, macaroni and cheese and tater tots. Chris told him that he'd run over to the hospital cafeteria as soon as he went to sleep for the LP. Ben, in his matter of fact tone asked, "Why can't you just go now?" OK. Off Chris went in search of the perfect steroid driven lunch. Luckily for Ben, his dad's a marathon runner and returned with the lunch even before Ben fell asleep! Ben was given his triple mix of chemo during the LP and then lunch was served! That poor hot dog! It never stood a chance!

We were taken to the Infusion room for the rest of his chemo - PEG and Vincristine and were sent home at around 2pm.

We got home and I was so exhausted that I took a nap! Ben ran around the house and played with his Game Boy. Later that evening, Chris came by the house to change clothes and meet Jeremy at his football camp. Ben went along for the ride and ended up passing the ball around with his friend Ryan D. He had a great day. It seemed.

At around 2am Ben came to our bedroom saying that he felt sick. He ended up throwing up a couple of time and holding his head saying that his brain hurt. He was able to keep a Zofran (anti nausea) med down and some Tylenol. He slept the rest of the night. Today, we took it easy and stayed home. Well, the boys stayed home with my mom while I ran some errands. I came home around 2pm and it started all over again. The headache was severe this time so I called the clinic. Mary said that the headaches are probably due to the many LPs he's had recently. Per her advise, I took him to his room to lie down, made it as dark as possible and put an ice pack on his head(Ben's request). He was able to keep some Tylenol down then he fell asleep.

When he woke, I served him a glass of Mt. Dew. According the clinic, caffeine is a great remedy for the headache he was suffering from and Mt. Dew is loaded with it. That's exactly why it's typically forbidden in Ben and Jeremy's diet and they know that. So, Ben felt awfully priviledged to be swigin' a dew!

He felt better and at this writing is wide awake! I think I'll try and read him a book or two.

The best news (I've saved the best for last) came yesterday around 5pm. We got a phone call and I saw on the caller ID that it was the clinic. I instantly wished that it was the scheduling department calling to tell us when Ben's next appointment is. I got nervous when I heard Dr. Lew's voice on the other end. He sensed the apprehension in my voice and was quick to assure me that he had good news. He told us that the initial tests of Ben's CNS from yesterday showed no abnormal cells! He will still send out the fluid for further testing, but this is definitely good news. We should know tomorrow what the official word is. If still no cells are found this takes Ben one step closer to 2nd remission. After 2 consecutive clean CNS findings, the patient is considered in remission. One more to go. This is crucial in Ben's current treatment plan. The goal is to eliminate the blasts in his CNS in these first 5 weeks and then continue with the treatment protocol as planned for the next 2 years. If remission is not achieved during these next 3 weeks it seems a Bone Marrow Transplant will be our only option. Please pray for remission!

We're having our head shaving party tomorrow. I'll be sure to post pictures!

Keep praying!


Love,
Belinda, Chris, Jeremy and Benjamin

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
And keep the following children in your prayers as well.

Sean Dever
Jake Rivers - relapsed ALL on May 24, 2005
Annie Coyle
William Olson
Kylie Barry
Gwen Mason
Gracie Mae Malloy
Andrew Vassil
Will Hennessy
Zach Hoechstetter
Merrill King
Jack Sanders
Brady Wolfe
Brady Scott
Holly Moore
Ian Rice
Sami Petrucciani


And for the angels who watch over us:

Sam Robb - June 25, 2007
Ethan Alain - April 28, 2001 - Aug. 3, 2005
Coulter Hampton - March 29, 2005
Haley Thompson - February 3, 2003 – December 19, 2004
Shelby Prescott - December 30,1998 - October 22, 2004
Carter Martin - November 20, 1996 - September 12, 2004
Alex Scott - August 1st, 2004

PAST NEWS:

Jeremy has a website! Hope to see you there!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
With the help of the following organizations, we are devoted to finding a cure:
CureSearch
CureSearch Athletics
Cure Childhood Cancer
The Leukemia Lymphoma Society

With the help of the following organizations, we are devoted to finding peace in every moment:
Make A Wish Foundation
Camp Sunshine
Lighthouse Family Retreat

Saturday, July 21, 2007 10:37 AM EST

Hi everyone,

Ben's been doing so well this week. Monday was pretty tiring for him and he ended up getting nauseous a bit on that night and again on Tuesday. But now he's good to go. The steroid kicked in pretty quickly and he's having to hold in his temper which the med aggrevates so easily. He's also having to control his appetite. We ran into so many issues the last time he was on a prolonged stretch of prednisone. I'm hoping to avoid some of them just by the fact that Ben is older and understands so much more.

He's been playing and has been very active with his brother and friends - swimming, bike riding and just being a wild little boy!

Thursday Chris and I finally sat Ben down for the "talk" which we'd both been avoiding. Up until now, we've only given Ben little bits of information about his new treatment plan. He knows that there are more cancer cells that we need to fight and he knows that his treatment no longer ends in August but will last a while longer.

After making sure that Jeremy was tucked away and distracted for a while (he was on the phone with his friend, Jeffery, getting Pokemon tips for his DS), Chris and I sat down with Ben to tell him of the side effects of his medicine. In the past, hair loss was a thorn in his side. The stares, the finger pointing, whispering and the occasional comment were memories he would prefer to forget. When Chris broke the news to him, his expression was as if he was hit by a bolt of lightening. He cried and screamed, "I want my hair! I'm never leaving this house ever again!" Everything within Ben's reach went sailing across the room and Chris grabbed him fearing he would lose control and accidentally hurt himself. Chris, Ben and I huddled into a crying heap. He was so angry saying, "I was almost done with cancer! Cancer is the worst thing in the whole entire world!" Then he asked me if he'd get his hair back before school started. My slight hesitation answered the question for him and he melted into tears. As he sobbed I explained to him that we had just had a meeting with the principal, Dr. Wood, and she said that she would send Mrs. Ascari (religious coordinator and previous 2nd grade teacher at QofA) over to our house every week to teach him everything he needs to know for 1st grade. He looked up, wiped away his last tear and said, "She'll come to our house?" Those of you who know Ben well will realize that service like that will make him feel like a king. Then I told him that the Dr. Wood also said that the drum lessons he'll be taking (also at home) will count as his music credit.

More air filled his chest. He seemed to be more calm and accepting so I thought I could sneak in a request to cut his hair short so that when it falls out it wouldn't be such a drastic change. "And your friend, Trenton, wants to cut his hair short when we cut yours," I told him. "That's stupid! Why would he do that? People are going to make fun of me!" I've never been so wrong. I explained to him that Trenton is his friend and his real friends won't make fun of him. I told him that Trenton wants to cut his hair with him so that he won't feel alone. That stopped the flow of tears too.

So . . . we'll be having a "Haircut Party" this Wednesday at 3pm! For any of you who would like to join us, Trenton's mom will be bringing her clippers and barber shop smocks to shave heads! She's also guaranteeing your new "doo" will shave seconds off your race times as we'll be swimming laps in the pool before and after your haircut! As per Ben's request, there will be pizza a ice cream cake for all to partake.

Thank you for the continued prayers for Ben and our family. Second round begins this Monday at 10am. He'll have an LP with the triple chemo mix and will spend the rest of the day in the infusion room receiving the rest of his chemo.

Thank you for following Ben's journey. We will update again next week!

Love,
Belinda, Chris, Jeremy and Benjamin

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
And keep the following children in your prayers as well.

Sean Dever
Jake Rivers - relapsed ALL on May 24, 2005
Annie Coyle
William Olson
Kylie Barry
Gwen Mason
Gracie Mae Malloy
Andrew Vassil
Will Hennessy
Zach Hoechstetter
Merrill King
Jack Sanders
Brady Wolfe
Brady Scott
Holly Moore
Ian Rice
Sami Petrucciani


And for the angels who watch over us:

Sam Robb - June 25, 2007
Ethan Alain - April 28, 2001 - Aug. 3, 2005
Coulter Hampton - March 29, 2005
Haley Thompson - February 3, 2003 – December 19, 2004
Shelby Prescott - December 30,1998 - October 22, 2004
Carter Martin - November 20, 1996 - September 12, 2004
Alex Scott - August 1st, 2004

PAST NEWS:

Jeremy has a website! Hope to see you there!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
With the help of the following organizations, we are devoted to finding a cure:
CureSearch
CureSearch Athletics
Cure Childhood Cancer
The Leukemia Lymphoma Society

With the help of the following organizations, we are devoted to finding peace in every moment:
Make A Wish Foundation
Camp Sunshine
Lighthouse Family Retreat

Monday, July 16, 2007 10:15 PM EST

Where do I begin?

I guess first and foremost you're wondering how today went. It went as well as could be expected.

Jeremy got picked up by his friend, Brian, early this morning, Chris got a couple of hours in at the office and Ben and I got to the clinic 15 minutes early! His only comment, "I sure hope they can get my blood to come out"(referencing his tempramental port). With the move I'd misplaced his numbing cream so that was the first thing we headed for when we got there. Fortunately I remembered the Press and Seal! (If your not aware, Press and Seal - yes, it's the stuff you cover you leftovers with - works extremely well hold numbing cream in place and is preferable to those who don't particulary care for anything sticky like bandaids and and Tegaderm.)

Chris showed up with the blueberry muffin and Funions and we were quickly whisked away to the procedure room. Ben proudly showed off his week old cough and runny nose to the anesthesiologist who scratched his head trying to decide if we should go on with the procedure. With a quick dose of albuterol Ben was deemed "good to go".

Ben's port was accessed and, not surprisingly, the port would not draw blood. Dr. Lew decided to go ahead with the procedure and try to draw blood when it was done. A dose of TPA was pushed through the port to clear up any clots. A quick physical before the procedure uncovered a nasty little ear infection none of us knew about, even Ben! So . . . after all of that the LP was underway. They drew more spinal fluid and will test for AML cells this time. He also received a dose of methotrexate, hydrocortisone and another med (name escapes me).

During the procedure, they administered a little more anesthesia than ususal. He just wouldn't fall asleep easily. He was not aware of his flailing arms but he surely kept the docs and nurses on their toes. At one point, he flipped over and bent the needle in his port. All went well with the procedure but when they tried to draw blood for the CBC they found that it was even difficult to push in the flush. So, out with the bad needle and a re-access later, in with the good needle. There's nothing like getting stuck twice but this one worked and Ben didn't even complain. CBC came back with some good numbers showing that Ben is healthy and strong.

The balance of the day was spent in the infusion room where Ben received Vincristine, PEG and Doxirubicin. He started to feel tired soon after the LP but was able to hold off taking the nap until he was in the car on his way home.

We feel so very fortunate to have the team of doctors and nurses that we do at CHOA. Today was the the first day of his relapse therapy and everyone was there to cheer us on -Dr. Lew, Nurses Terry, Kim, Stephanie, Heather and Kerry. They all know Ben so well and were able to make him feel extremely comfortable today. Heather showed up with another Fantastic 4 action figure (she started his collection and is determined to fill it!), Kim's silliness always makes Ben laugh, Terry offered Ben one of her new pups which he gladly accepted and I immediately denied and Dr. Lew is just a comfort to have around. He's a smart man who know what he's doing. Kerry, coincidentally, was a hospital nurse that Ben got to know when he was 2 years old and first diagnosed. You may remember her as Nurse "Cheeto". She gave Ben about 20 mini bags of Cheetos when she found out they were his favorite.

The day went by without a hitch and that's how we like it. Here's a bit of little kid wisdom which Ben imparted to me while he sat in the infusion room:

While eating his bag of mini Resees Peanut Butter cups (his absolute favorite candy which our friend Mrs. Steinkirchner kindly armed Ben with this morning) . . ."I LOVE Resees Peanut Butter cups! I could eat them all day. Whoever invented these, I PRAISE him! Actually, God made everything in these so, whenever I eat Resees I'm actually praising God."

AMEN to that. I think that gives us all permission to have Resees Peanut Butter cups whenever we choose. Who are we to deny the Lord a little praise?!

And as for our little trip to Disney - it could not have been any better! Ben is our newest rollercoster connessieuer. This was the first year that he was tall enough to get on the bigger rides and he was absolutely thrilled! He's one of those "throw your hands up in the air" kind of riders. The scarier that better! At one point Ben was in the car ahead of me on the Space Mountain ride when it dawned on me that this ride is in complete darkness. In a flash I worried that he better not slip out of his seat otherwise I won't know it until after the ride is over! I placed my hands on his shoulders and told him not to be scared. He grabbed my hands and gently pushed them away, "You can let go now, mom." If you're looking for a way to understand how I feel about Ben's cancer, take this rollercoster story as an analogy. I'm fearful that in the darkeness of this whole experinece and in the blink of an eye my worst nightmare can come true. But in reality, all I can do is let go. My hands can't help him now. I can't be his protector. But I can let go and trust that God will see him through this. That's all I can do and that's exactly what I will do. I trusted Him the first time this happened and I'll certainly do the same this time around. And with every ounce of my being.

Thank you all again for your love and support. We've been dealt and pretty tough hand but I know that with you by our side we will get through this. The next 4 mondays Ben will be in the clinic receiving identical treatment as he did today. Weeks 6 through 10 Ben will be hospitalized as the chemo given during this time is extremely toxic and he must be under constant watch. Pray for him. As strong as he is, he is still so very small.

Also pray for another young boy, Sean Devers, a 6th grader at QofA who was just diagnosed with Ewing Sarcoma. I don't know what God has in his plans for our little community, but he sure is singling us out for something. I just hope we find out what is it one of these days.

Much love to you all.

Belinda, Chris, Jeremy and Ben

Monday, July 9, 2007 10:18 PM CDT

Hi Everyone,

Belinda and I have both been:

a. Devastated with the news of Ben’s relapse and struggling with all the emotion as well as trying to determine / learn what the next steps are for him; and
b. Busy with the move, unpacking & etc.

So we apologize if we have not been very communicative with the details of his situation. Communication has been further impeded b/c we do not have internet service at the house yet.

Here is what we know so far:

• Ben has isolated central nervous systems (CNS) relapse of ALL cells. There was a small percentage of undefined cells but Dr. Lew said that it was not worth taking more CNS fluid to test b/c 90ere ALL cells and even if the balance were AML cells the treatment is very similar for both.

• Dr. Lew communicated Ben’s situation to 12 other COG doctors around the country and 11 came back with the opinion that we should do the standard ALL relapse therapy over a bone marrow transplant (BMT). The one doctor in favor of the BMT said his opinion was based upon a hunch not specific experience.

• Biphenotypic Acute Leukemia (BAL) is so rare that no one had experience with a CNS relapse in a BAL patient. The consensus was that he looks most like an ALL patient, responded well to ALL therapy so treat him as an ALL patient.

• About 20f ALL patients have a relapse. For those that had an initial remission of 18 months or longer the survival rate is about 80 Ben’s initial remission was approximately 36 months. So, while Dr. Lew will not commit to numbers for Ben since he has BAL, he points to these odds and say that Ben has a very good chance.

• On Monday July 16th Ben will start his ALL relapse therapy. The protocol take about 2.5 years to complete. The first 14 months are very difficult. The last year is maintenance. His protocol is very similar to what Jake Rivers is on. The first 5 weeks will be outpatient therapy. It gets more intense after that. He will spend more time in the hospital than he did the first time around. I do not recall the exact phases but I recall that much of the chemo will be administered in the hospital over 3-4 days during which he will be inpatient. He is also likely to get fevers while neutropenic and thus have more unplanned hospital stays. There is one stage that is so toxic that it will require Ben to be in the hospital for approximately 30 days straight.

• He will undergo cranial radiation in about 6 months. This is a relatively short period of a few weeks and supposedly the radiation levels are rather low compared to other cancer treatments. Nonetheless, there is a risk of brain damage and additional cancers resulting from this treatment. The chances are low but there.

• Ben will lose his hair a few weeks into the treatment and will likely not get much of it back until the end of the initial 14 month cycle. He will be on steroids for extended periods (30 days) and will thus have the bloating and anger issues. He will miss a great amount of school if not the entire year. We are looking into home schooling and one Q of A teacher has already volunteered to teach Ben at home. Ben will miss flag football, karate and probably all other sports this year. We are going to get him drums (his request even before relapse) and lessons. We are also getting him a lap top so that he can play webkinz and communicate with his friends and family while in the hospital.

• We have told both Jeremy & Ben limited amounts of detail about this situation. We have told them that Ben still has a little cancer left and will need additional treatment. We have shared a little more with Jeremy so that he will be ready. Ben has historically not wanted to know what lies ahead to far in advance so we have told him less. Also, he is younger and does not really understand what we are saying. Jeremy is already showing signs of strain and a few nervous ticks have resurfaced. We are arranging therapy for both boys through Dr. Schoffner who they both know and like.

• Dr. Lew said that just like before, the kids tend to handle the relapse better than the adults. He said that he expects Ben’s to rapidly adjust and learn to enjoy himself in the hospital. He certainly did before and even cried at times when it was time to go home. Ben has been on treatment for more than 1/2 of his life and for as long as he can remember so this is nothing new for him. I do expect him to have anxiety about certain aspects and I know that he will miss his friends from school.

• We are leaving tomorrow afternoon to take the boys to Disney for a few days of R & R before we start the treatment plan again. We felt that the boys deserved a nice trip in advance of all the crap that lies ahead.

• We know that we will need your help to get through this. Today we are in pretty good shape but we will need help when the hospitalizations start. We will need someone to help with Jeremy, his school work and his activities. We would love for Ben to have visitors and B and I will need help as well.

While cancer is no fun we are fortunate to have a very strong faith and support group. We know that all of you love Jeremy & Ben as much as we do. I know we can get through this and get Ben 100ured. Again, I apologize if the information flow has been choppy. We want everyone to know what is going on we have just been absolutely shell shocked with this news. I am finally feeling adjusted and thinking somewhat clearly again. Thanks for all the love, support and patience.

Tuesday, July 3, 2007 7:52 PM EST

Hello all,

We received a call from Dr. Lew this afternoon regarding the flow cytometry test performed at Emory on Ben’s spinal fluid and bone marrow.

. Flow confirmed absence of cancer cells in the bone marrow.
. Flow confirmed presence of only ALL cells in CNS.
. Flow confirmed full CNS relapse.

Tomorrow Dr. Lew will begin discussions with his Biphenotypic colleagues (of which there are few) regarding Ben’s treatment path. These are the 2 options that currently lay ahead:

Although Ben has had both ALL and AML leukemias, he has performed and responded like a typical ALL patient in various ways, early remission, acceptance of High Risk ALL therapy, and late isolated CNS relapse. Should we decided to continue treating Ben as if he were an ALL patient, an overview of his treatment includes approximately 5 months intensive chemotherapy, 2 months cranial radiation, 5 months intensive chemotherapy and 12 months maintenance chemo.
Ben is not an ALL patient. Although the flow did not find presence of cancer in the bone marrow, Dr. Lew will get a consensus of the other doctors regarding forging ahead with a bone marrow transplant anyway. An overview of this treatment includes approximately 2 months intensive chemo then immediately to transplant.

The “mild” treatment I was hoping for is now irrelevant. Since the flow cytometry confirmed full relapse we must start either relapse therapy or BMT. Deciding on which path to take is the big question. And it’s the same question we faced 3 1/2 years ago. Neither plan is perfect for Ben’s type of cancer. Please pray that the doctor’s choose the treatment plan that will take Ben to complete and total healing and that Ben may endure this process with minimal pain and discomfort and side effects. Pray for his inner peace as well – that his spirit stays strong and nourishes his strength to sustain the fight.

Please also pray that our whole family has the might to go forward. Jeremy has mild OCD that manifests itself during stressful times like these. Please pray for his protection and that he may find comfort in the Lord.

We are completely numb by today’s news but we continue to hope and pray. We haven’t stopped believing that God will see us through so we will go on. For now, we will finish moving into our new home this week and head off to Jeremy and Ben’s favorite place on earth . . . Disney World. Chris and I will meet with Dr. Lew on Friday to go over some specifics regarding the ALL treatment path and Ben will have an Echocardiogram to assure his heart is healthy to receive this onslaught of chemo. If this is the protocol chosen for Ben it will begin on Monday the 16th. Dear God, let us feel your healing presence.

Thanks for following Ben's journey.

Love,
Chris, Belinda, Jeremy and Benjamin

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
And keep the following children in your prayers as well. They are going through extremely tough times.
Jake Rivers - relapsed ALL on May 24, 2005
Annie Coyle - diagnosed with Non-Hodgkin’s Lymphoma March, 2006 - Completed chemo June 2006
William Olson
Kylie Barry
Gwen Mason
Gracie Mae Malloy

And as always, our other friends who are fighting the battle:
Andrew Vassil
Will Hennessy
Zach Hoechstetter - Port removed and officially off treatment Sept. 5, 2005!!
Merrill King
Jack Sanders
Brady Wolfe
Brady Scott
Holly Moore
Ian Rice
Sami Petrucciani -- A new friend we met through Merrill King.

And for the angels who watch over us:
Sam Robb - June 25, 2007
Ethan Alain - April 28, 2001 - Aug. 3, 2005
Coulter Hampton - March 29, 2005
Haley Thompson - February 3, 2003 – December 19, 2004
Shelby Prescott - December 30,1998 - October 22, 2004
Carter Martin - November 20, 1996 - September 12, 2004
Alex Scott - August 1st, 2004

PAST NEWS:

Jeremy has a website! Hope to see you there!

Jeremy and Ben making news in the Atlanta Journal Constitution!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
With the help of the following organizations, we are devoted to finding a cure:
CureSearch
CureSearch Athletics
Cure Childhood Cancer
The Leukemia Lymphoma Society

With the help of the following organizations, we are devoted to finding peace in every moment:
Make A Wish Foundation
Camp Sunshine
Lighthouse Family Retreat

Monday, July 2, 2007 10:38 PM EST

Hi all,
We finally heard from Ben’s doctor today. Although we did not receive the huge miracle I’d been asking for, I know that many prayers were heard and answered.

The initial tests run were simply through a microscope and viewed with the naked eye. According to Dr. Lew, he saw a reduced number of cancer cells in Ben’s CNS. The count was 4 abnormal cells per micro liter which is down from the 17 cells found last Thursday. He fully expected a reduced amount considering the methotrexate that was administered during Thursday’s LP. But it was still good news. The best news, although still preliminary, is that he did not see any cancer cells in the bone marrow. THAT is very good news on many levels. Should the tests done by Emory tomorrow show the same results, the doctors are likely to prescribe a treatment plan that is the mildest of all the options. Ben would most likely finish out his maintenance phase which will end August 11 then would begin a monthly spinal tap regimen for the next 6 to 8 months to eradicate all cancer cells. Although the side effects of the methotrexate have plagued Ben in the past (mouth sores and such) we are happy to help him deal with them over anything the more toxic treatment plans would bring.

So . . . thank you, thank you for all of the prayers today. I am certain God heard the all the racket and responded accordingly! But I’m asking again for your help. Although the news from Dr. Lew was positive, it is not the final word on Ben’s condition. Please pray that Emory’s findings are better. Still pray for the miracle that both CNS and bone marrow are clean.

Thanks for following Ben's journey.

Love,
Chris, Belinda, Jeremy and Benjamin

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
And keep the following children in your prayers as well. They are going through extremely tough times.
Jake Rivers - relapsed ALL on May 24, 2005
Annie Coyle - diagnosed with Non-Hodgkin’s Lymphoma March, 2006 - Completed chemo June 2006
William Olson
Kylie Barry
Gwen Mason
Gracie Mae Malloy

And as always, our other friends who are fighting the battle:
Andrew Vassil
Will Hennessy
Zach Hoechstetter - Port removed and officially off treatment Sept. 5, 2005!!
Merrill King
Jack Sanders
Brady Wolfe
Brady Scott
Holly Moore
Ian Rice
Sami Petrucciani -- A new friend we met through Merrill King.

And for the angels who watch over us:
Sam Robb - June 25, 2007
Ethan Alain - April 28, 2001 - Aug. 3, 2005
Coulter Hampton - March 29, 2005
Haley Thompson - February 3, 2003 – December 19, 2004
Shelby Prescott - December 30,1998 - October 22, 2004
Carter Martin - November 20, 1996 - September 12, 2004
Alex Scott - August 1st, 2004

PAST NEWS:

Jeremy has a website! Hope to see you there!

Jeremy and Ben making news in the Atlanta Journal Constitution!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
With the help of the following organizations, we are devoted to finding a cure:
CureSearch
CureSearch Athletics
Cure Childhood Cancer
The Leukemia Lymphoma Society

With the help of the following organizations, we are devoted to finding peace in every moment:
Make A Wish Foundation
Camp Sunshine
Lighthouse Family Retreat

Friday, June 29, 2007 9:51 PM EST

Hi to all,
Ben went to the clinic yesterday for his last spinal tap of his 3 ½ year long chemotherapy treatment. It was to be his next to last visit to the clinic for chemo. But things did not go well. Dr. Lew called us a few hours after the procedure to tell us that leukemia cells were found in Ben’s spinal fluid. In his words, “I believe Ben is relapsing.” A sample of the spinal fluid was sent to Emory for testing. The results were inconclusive because not enough fluid was drawn to accommodate a second test. Here’s what we know so far:

- Spinal tap report showed a higher than normal white blood cell count and 17 percent abnormal cells (leukemic). Dr. Lew, on the other hand, believes he saw at least 50 percent abnormal cells.
- Ben will undergo a bone marrow aspirate Monday morning to see whether the leukemic cells are growing there as well. At the same time, another LP will be performed.
- We will decide on Ben’s treatment plan upon diagnosis of the bone marrow and new spinal fluid.
- Ben feels and looks extraordinarily strong and healthy. He’s swimming almost everyday, keeps us laughing with his strange little antics and is thoroughly enjoying his summer.

We are completely torn apart by this news but are slowly trying to collect ourselves for what could most probably be a long road ahead. Please pray that there are no traces of relapse in Ben’s bone marrow and that the second LP shows a reduced amount of blasts. Dr. Lew told us that there is a slim outside chance that we caught the growth of abnormal cells early and that the methotrexate and vincristine administered yesterday could have headed off a relapse. But he is doubtful. In the cases he’s seen such as Ben’s, full relapse at this point is eminent.

Thank you all for being with us to this point. We hope you will continue the prayers for Ben and help us show this disease what a real miracle looks like.

Love,
Chris, Belinda, Jeremy and Benjamin

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
And keep the following children in your prayers as well. They are going through extremely tough times.
Jake Rivers - relapsed ALL on May 24, 2005
Annie Coyle - diagnosed with Non-Hodgkin’s Lymphoma March, 2006 - Completed chemo June 2006
William Olson
Kylie Barry
Gwen Mason
Gracie Mae Malloy

And as always, our other friends who are fighting the battle:
Andrew Vassil
Will Hennessy
Zach Hoechstetter - Port removed and officially off treatment Sept. 5, 2005!!
Merrill King
Jack Sanders
Brady Wolfe
Brady Scott
Holly Moore
Ian Rice
Sami Petrucciani -- A new friend we met through Merrill King.

And for the angels who watch over us:
Sam Robb - June 25, 2007
Ethan Alain - April 28, 2001 - Aug. 3, 2005
Coulter Hampton - March 29, 2005
Haley Thompson - February 3, 2003 – December 19, 2004
Shelby Prescott - December 30,1998 - October 22, 2004
Carter Martin - November 20, 1996 - September 12, 2004
Alex Scott - August 1st, 2004

PAST NEWS:

Jeremy has a website! Hope to see you there!

Jeremy and Ben making news in the Atlanta Journal Constitution!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
With the help of the following organizations, we are devoted to finding a cure:
CureSearch
CureSearch Athletics
Cure Childhood Cancer
The Leukemia Lymphoma Society

With the help of the following organizations, we are devoted to finding peace in every moment:
Make A Wish Foundation
Camp Sunshine
Lighthouse Family Retreat

Tuesday, June 26, 2007 7:39 AM EXT

So, we went in again last week for Ben's weekly CBC and the visit couldn't have gone better. His port was accessed with little resistance from Ben and blood flowed easily from his port. The results of the CBC showed an elevated ANC of 2100 but they kept his med doses the same for fear of lowering his ANC too far again so close to the end of his treatment.

Yesterday we all went the clinic bright and early in the morning for Ben's second to last LP. Ben was NPO since 8pm the night before and was starving when he woke up. Ben and I went straight to the infusion room for numbing cream and Chris and Jeremy stopped at the deli downstairs for the usual - blueberry muffin and Funions (Yes, it was supposed to be pork skins, but I didn't have the heart to tell Chris he'd picked up the wrong thing. Fortunately, Ben didn't even bat and eye.)

By 10am we were in the procedure room. Ben was starving and they were going to run a quick CBC to determine if he could receive the methotrexate. But the port was clogged again. Ben started to panic. When would he be able to eat his blueberry muffin? With each pull of the syringe Ben moaned and his stomach growled. Kim pushed a few cc's of TPA (draino) to get it started. An hour later with only a tinge of blood showing, Dr. Lew ordered a dye study of the port and sent us to the hospital. Fortunately for Ben, Kim was on his side. He was miserable with hunger and Dr. Lew wanted him to hang on another hour or so to get the report from the dye study. Kim pleaded with Dr. Lew suggesting that the results could show a compromised port which would require them to postpone the LP and not to mention Ben was miserable and starving! Dr. Lew agreed that the the procedure could be postponed and gave way to the flood of Ben's famine.

A bag of Funions, half a ham and cheese sandwich and a blueberry muffin later, the dye study revealed a perfect port. It was not misplaced, it was not cracked or leaking and it was not even clogged. The TPA did the trick again.

So instead of an LP, Ben left the clinic yesterday with a port full of TPA and an appointment this Thursday for his rescheduled LP.

Please keep Ben in your prayers and ask that his port continues to work for Thursday and for his last his last dose of vincristine at the end of July when the port will be removed.

On another note, please pray for the soul of 20 year old, Sam Robb who died yesterday. His mother is the Business Development Director at Queen of Angels. Sam was a Ewing Sarcoma survivor but was recently diagnosed with lung cancer. He did not survive yesterday's surgery which was to remove an aggressive tumor. Pray that the gates to heaven are open wide and will receive his soul to enjoy eternal life. Also pray for the Robb family. The loss that they must be feeling is impossible to comprehend. Please pray for their strength and comfort.

Love,
Belinda, Chris, Jeremy and Benjamin
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
And keep the following children in your prayers as well. They are going through extremely tough times.
Jake Rivers - relapsed ALL on May 24, 2005
Annie Coyle - diagnosed with Non-Hodgkin’s Lymphoma March, 2006 - Completed chemo June 2006
William Olson
Kylie Barry
Gwen Mason
Gracie Mae Malloy

And as always, our other friends who are fighting the battle:
Andrew Vassil
Will Hennessy
Zach Hoechstetter - Port removed and officially off treatment Sept. 5, 2005!!
Merrill King
Jack Sanders
Brady Wolfe
Brady Scott
Holly Moore
Ian Rice
Sami Petrucciani -- A new friend we met through Merrill King.

And for the angels who watch over us:
Ethan Alain - April 28, 2001 - Aug. 3, 2005
Coulter Hampton - March 29, 2005
Haley Thompson - February 3, 2003 – December 19, 2004
Shelby Prescott - December 30,1998 - October 22, 2004
Carter Martin - November 20, 1996 - September 12, 2004
Alex Scott - August 1st, 2004

PAST NEWS:

Jeremy has a website! Hope to see you there!

Jeremy and Ben making news in the Atlanta Journal Constitution!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
With the help of the following organizations, we are devoted to finding a cure:
CureSearch
CureSearch Athletics
Cure Childhood Cancer
The Leukemia Lymphoma Society

With the help of the following organizations, we are devoted to finding peace in every moment:
Make A Wish Foundation
Camp Sunshine
Lighthouse Family Retreat

Wednesday, June 13, 2007 10:53 PM EST

Another quick update:

Ben's ANC is at 1100 this week. Had a little more trouble drawing blood again but the TPA (draino!) did the trick in under an hour. All meds stay the same for this week and we'll run another CBC next week. Stay tuned!

Activies for the week:
Art and PE camp at Queen of Angels followed by Vacation Bible school.

Love,
Belinda, Chris, Jeremy and Benjamin
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
And keep the following children in your prayers as well. They are going through extremely tough times.
Jake Rivers - relapsed ALL on May 24, 2005
Annie Coyle - diagnosed with Non-Hodgkin’s Lymphoma March, 2006 - Completed chemo June 2006
William Olson
Kylie Barry
Gwen Mason
Gracie Mae Malloy

And as always, our other friends who are fighting the battle:
Andrew Vassil
Will Hennessy
Zach Hoechstetter - Port removed and officially off treatment Sept. 5, 2005!!
Merrill King
Jack Sanders
Brady Wolfe
Brady Scott
Holly Moore
Ian Rice
Sami Petrucciani -- A new friend we met through Merrill King.

And for the angels who watch over us:
Ethan Alain - April 28, 2001 - Aug. 3, 2005
Coulter Hampton - March 29, 2005
Haley Thompson - February 3, 2003 – December 19, 2004
Shelby Prescott - December 30,1998 - October 22, 2004
Carter Martin - November 20, 1996 - September 12, 2004
Alex Scott - August 1st, 2004

PAST NEWS:

Jeremy has a website! Hope to see you there!

Jeremy and Ben making news in the Atlanta Journal Constitution!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
With the help of the following organizations, we are devoted to finding a cure:
CureSearch
CureSearch Athletics
Cure Childhood Cancer
The Leukemia Lymphoma Society

With the help of the following organizations, we are devoted to finding peace in every moment:
Make A Wish Foundation
Camp Sunshine
Lighthouse Family Retreat

Thursday, June 7, 2007 8:56 AM EST

Quick update:

Ben went to the clinic on Tuesday. His ANC was up to 2600 so they put him back on his chemo but at lower doses. He’s due back to the clinic next Tuesday for another CBC. I'll keep you posted!

Oh, and he started he started football camp!

Love,
Belinda, Chris, Jeremy and Benjamin
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
And keep the following children in your prayers as well. They are going through extremely tough times.
Jake Rivers - relapsed ALL on May 24, 2005
Annie Coyle - diagnosed with Non-Hodgkin’s Lymphoma March, 2006 - Completed chemo June 2006
William Olson
Kylie Barry
Gwen Mason
Gracie Mae Malloy

And as always, our other friends who are fighting the battle:
Andrew Vassil
Will Hennessy
Zach Hoechstetter - Port removed and officially off treatment Sept. 5, 2005!!
Merrill King
Jack Sanders
Brady Wolfe
Brady Scott
Holly Moore
Ian Rice
Sami Petrucciani -- A new friend we met through Merrill King.

And for the angels who watch over us:
Ethan Alain - April 28, 2001 - Aug. 3, 2005
Coulter Hampton - March 29, 2005
Haley Thompson - February 3, 2003 – December 19, 2004
Shelby Prescott - December 30,1998 - October 22, 2004
Carter Martin - November 20, 1996 - September 12, 2004
Alex Scott - August 1st, 2004

PAST NEWS:

Jeremy has a website! Hope to see you there!

Jeremy and Ben making news in the Atlanta Journal Constitution!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
With the help of the following organizations, we are devoted to finding a cure:
CureSearch
CureSearch Athletics
Cure Childhood Cancer
The Leukemia Lymphoma Society

With the help of the following organizations, we are devoted to finding peace in every moment:
Make A Wish Foundation
Camp Sunshine
Lighthouse Family Retreat

Wednesday, May 30, 2007 8:10 AM EST

Okay, first update of the summer! First off, Ben is EXTREMELY excited that school is out! He enjoyed his first year at big kid school but is more excited about the two month break before becoming a 1st grader!

We've already been swimming a few times and just recently finished out his baseball season. Ben and Jeremy are still carrying around their mits and baseballs at the ready for any pick up game that might occur.

Ben ended up at the ER again on Mother's Day for a fever. Everything checked out well and his fever subsided shortly after Chris got Ben to the hospital. About a week later, I took Ben to the pediatrician for an ear infection. The doc put Ben on Augmentin and also perscribed Claritin, and Albuterol for what she suspected are allergies. His cough was still hanging around and she thought the inhaler might do the trick. A week later, I brought Ben back for a re-check. Ear was looking better but the cough had not changed significantly. Dr. Marcus changed his allergy meds to Zyrtec and Flovent. Zyrtec because I told her that I thought the Claritin was making him sleepy (he would ask to take a nap in the afternoons - very unBenlike!) and Flovent because it is a steroid that will help with inflammation. He's been on the two meds for about 5 days now and we're seeing a slight improvement.

Ben's clinic appointment was yesterday. Nurse Terry still found a little fluid behind the left eardrum although Ben has finished his antibiotic. After close study of his CBC and finding that his ANC is 330 (neutrapenic) she and Dr. George decided to hold off on any more antibiotics and also stopped his chemo for the week. Depending on what his counts look like next week they'll decided how to proceed.

Hmmm . . . wasn't counting on drama during the last months of his chemotherapy. But if this is as bad as it gets, I'll take it. We're still looking forward to August. Ben overheard an converstion I had with Nurse Terry and knows that August is potentially the month when his port will be removed. He's very excited about this and has been trying to guess what color it is. His strength and positive outlook throughout this entire experience has really helped me get through this. We were at the pool the other day and Ben was having a few run ins with several of the kids. Some were taking his toys, others were cutting in front of him at the waterslide line and some were just plain getting on his nerves. He came over to me very exasperated at one point and said, "Mom, see that kid over there? He's so wierd! He said, 'Hey, what's that thing sticking out of you chest?' and I said to him, 'None of your business!' I really wanted to kick him in the butt!"

My tough, little, butt-kicking cookie.

Anyway, keep Ben in your prayers. We're trying to keep the rest of his treatment as uneventful as possible!

Love,
Belinda, Chris, Jeremy and Benjamin
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
And keep the following children in your prayers as well. They are going through extremely tough times.
Jake Rivers - relapsed ALL on May 24, 2005
Annie Coyle - diagnosed with Non-Hodgkin’s Lymphoma March, 2006 - Completed chemo June 2006
William Olson
Kylie Barry
Gwen Mason
Gracie Mae Malloy

And as always, our other friends who are fighting the battle:
Andrew Vassil
Will Hennessy
Zach Hoechstetter - Port removed and officially off treatment Sept. 5, 2005!!
Merrill King
Jack Sanders
Brady Wolfe
Brady Scott
Holly Moore
Ian Rice
Sami Petrucciani -- A new friend we met through Merrill King.

And for the angels who watch over us:
Ethan Alain - April 28, 2001 - Aug. 3, 2005
Coulter Hampton - March 29, 2005
Haley Thompson - February 3, 2003 – December 19, 2004
Shelby Prescott - December 30,1998 - October 22, 2004
Carter Martin - November 20, 1996 - September 12, 2004
Alex Scott - August 1st, 2004

PAST NEWS:

Jeremy has a website! Hope to see you there!

Jeremy and Ben making news in the Atlanta Journal Constitution!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
With the help of the following organizations, we are devoted to finding a cure:
CureSearch
CureSearch Athletics
Cure Childhood Cancer
The Leukemia Lymphoma Society

With the help of the following organizations, we are devoted to finding peace in every moment:
Make A Wish Foundation
Camp Sunshine
Lighthouse Family Retreat

Monday, May 7, 2007 10:25 PM EST

I'm sorry this update is so late. Let's see . . . where to begin?

Ben visted the clinic on April 25th for his regular checkup and a dose of vincristine. We arrived early for our morning appointment. I was prepared this time and had the numbing cream on in plenty of time to access him. Ben was well but still nursing a cough he'd had for about a week. Nurse Kim accessed his port for what we've termed and "in and out" where she accesses the port, pushes the meds and then deaccesses. Usually a really quick procedure. But this time the port gave us some trouble. Kim usually draws a sample of blood to do his blood counts but the port wasn't giving. She thought there might have been a small clot at the end of the tube so she pushed in a few cc's of TPA (Draino for clogged ports!). She came in and checked every 15 minutes and still no blood. Ben and I had watched "High School Musical" in it's entirety and still no blood. I was starting to worry.

I asked Kim how he'd get his vincristine if we couldn't use the port. "That's the bad part", she said. I knew what she was going to say, I just didn't want to hear it. Since Ben only has 4 more visits to go they would probably opt for using PIC lines. (I'm not sure of the spelling.) Basically, they insert a line through the top of the hand and feed it through the length of the arm to the heart. All while the kid is awake. Our dear friend, Jake, has endured many of these and I was nervous that this might be Ben's fate.

But the next step was a Dye study. They sent us to the hospital to do a procedure where we would actually see Ben's port (via xray) in action. I'd called Chris to be with us by then, I was too nervous to do this without him. The doctor pushed some dye into Ben's port and we could see it flowing very freely. He was puzzled because the port seemed to be intact and functioning properly. As a last measure, he tried to draw the blood one last time. And wouldn't you know it - out it came! We hustled back over to the clinic and completed our quick "in and out" visit in about 4 hours! Much to Ben's dismay, he missed a whole day of school.

Last Friday Ben and Jeremy's baseball league was invited to parade around Turner Stadium before the Braves faced the Dodgers. Ben stayed home with me that day because early that morning, around 3a.m. Ben woke me up saying he wanted something to eat. He went to the kitchen ahead of me and when I got there he was trying to pour himself a glass of chocolate milk. His hands were shakey and when I put my hand to his head I felt the he was cold and clammy. I got spooked! These were the same symptoms he'd had nearly 3 years ago when he almost fell into a coma from low blood sugar. I quickly made him a pbj sandwich, poured him a bowl of cereal and filled his glass a second time with chocolate milk. He ate it all and fell asleep on the chair. I stayed up the rest of the night wondering what was happening.

He stayed home from school that day. We played a few video games, watched some tv, colored and had a good day together. I called the clinic and they assured me that the event he'd had that morning was not due to the increased 6-MP and if he was eating well then he should be fine. By the end of the day he seemed much better and convinced me that he could go to the Braves game that night.

What a sight! My two boys and their teammates on the Braves home field. They never looked so small but never seemed so proud. Half way around the field I saw Chris (he was allowed on the field too because he coaches Ben's team) pick Ben up and put him on his shoulders. As they made there way out of the tunnel after the parade I saw the fatigue on Ben's face. He was not up to staying a few more hours to watch the game.

Jeremy opted to stay at the game with some friends and Chris and I were so worried about Ben that we both decided to take him home. On the way, I decided that since we were going to pass the ER anyway, we may as well pay them a visit and figure out what was going on. They quickly got us into triage and asked what his symptoms were. I told them about what had happened early that morning and about his cough and sniffles and that was all I had to give them. We didn't detect a fever until we got to the ER. It was 103! Chris and I were both shocked. So we ended up at the right place after all.

They xrayed his chest, did a CBC and swabbed his troat just as a percaution. We were all ready to be stumped by his condition. Even the doctor was surprised when she finally came back with the results . . . he had strep throat! A relief in a way. At least we knew how to fix it. The other surprising news was that his ANC had dropped to 900 from 3000 the week before. It is in a more desireble place as far as chemo patience go but it was just so alarming how quickly it fell. Jeremy got dropped off at the ER after the game by our friends, the Zondlaks (Thanks guys!!!) and we all finally made it home around 1am the next morning.

Ben got Amoxicillin for the strep which was quickly changed this morning when I spoke to Kim at the clinic. Dr. Lew perscribed a round of Omnicef instead. Ben says he feels fine and he's in pretty good spirits but this darned cough just won't go away.

Anyway, keep Ben in your prayers. We're trying to keep the rest of his treatment as uneventful as possible!

Love,
Belinda, Chris, Jeremy and Benjamin
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
And keep the following children in your prayers as well. They are going through extremely tough times.
Jake Rivers - relapsed ALL on May 24, 2005
Annie Coyle - diagnosed with Non-Hodgkin’s Lymphoma March, 2006 - Completed chemo June 2006
William Olson
Kylie Barry
Gwen Mason
Gracie Mae Malloy

And as always, our other friends who are fighting the battle:
Andrew Vassil
Will Hennessy
Zach Hoechstetter - Port removed and officially off treatment Sept. 5, 2005!!
Merrill King
Jack Sanders
Brady Wolfe
Brady Scott
Holly Moore
Ian Rice
Sami Petrucciani -- A new friend we met through Merrill King.

And for the angels who watch over us:
Ethan Alain - April 28, 2001 - Aug. 3, 2005
Coulter Hampton - March 29, 2005
Haley Thompson - February 3, 2003 – December 19, 2004
Shelby Prescott - December 30,1998 - October 22, 2004
Carter Martin - November 20, 1996 - September 12, 2004
Alex Scott - August 1st, 2004

PAST NEWS:

Jeremy has a website! Hope to see you there!

Jeremy and Ben making news in the Atlanta Journal Constitution!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
With the help of the following organizations, we are devoted to finding a cure:
CureSearch
CureSearch Athletics
Cure Childhood Cancer
The Leukemia Lymphoma Society

With the help of the following organizations, we are devoted to finding peace in every moment:
Make A Wish Foundation
Camp Sunshine
Lighthouse Family Retreat

Friday, March 30, 2007 10:33 AM CDT

OK, lots and lots of stuff going on!

First off, Ben is doing great and LOVING everything he's into - even school!

Two weeks ago, one of Ben and Jeremy's karate instructors opened her school to host a "Spring Board Break" event on behalf of CureSearch. Miss Eikey and her students brought in nearly $4000! We attended the event which included a board breaking station (of course) a jumpy obstacle course, face painting and food, food food! We couldn't have asked for a better event and the boys enjoyed every minute of it!

Benjamin is becoming a really good baseball player. The funny thing is that he just doesn't know it. At one game he was seen kicking dirt on to second base while telling the other basemen to do the same so that the opposing team wouldn't be able to find the bases! Just then, Ben dove to the left without flinching, snagged a low line drive and made and out at 2nd base! He loves playing shortstop and first base - rarely allowing the ball to escape him. At his last game he received the game ball after playing the first half in his flip flops! (Still working on putting his gear away properly.) We're still waiting for his interest in baseball to catch up with his skill level but for now he's having a great time!

Ben went to the clinic yesterday for a scheduled LP. This one just snuck up on me and I was so ill-prepared. After waking up the boys in the morning I asked Ben what he wanted for breakfast. He said, "Mom, I can't. I'm going to the twinkly star room today." Noting like being corrected by your 5 year old! It was true. He could not eat before the procedure. Chris took Jeremy to school and Ben and I ventured into morning traffic hoping to make it to the clinic just in time. About 45 minutes into the drive Ben reminded me that I'd forgotten to put on his numbing cream! I could tell my day was going to be challenging. We finally made it to the clinic and went straight to the infusion room to beg for some numbing cream. I really didn't have to beg - they are always very accomodating. We got Ben's cream on in plenty of time to do the LP.

Chris arrived and calmed Ben down as they accessed his port and prepared him for the procedure. Counts came back and everything looked good. The anesthesiologists pushed the "sleepy" med through Ben's line as has always been done for the passed 3 years. Ben's eyes closed and he gave us his typical yawn signaling that he was asleep. Chris and I quielty stepped out to allow the docs and nurses to complete the procedure. It was about 2 minutes later that we heard a blood curdling scream from Benjamin. Chris and I both ran to the door and were quickly denied entry by a nurse assuring us that everything was ok. Then I heard Ben yell " I want something to eat!" He obviously wasn't completely under when we'd left the room. As the nurse swabbed the area on his back to clean it, he sat up and yelled. The anesthesiologist pushed even more med through Ben's line and got him under. Another 2 minutes later we heard Ben scream again. This time no one was keeping Chris out of the room. The nurses were on top of Ben because the procedure had already begun. They were trying to keep him completely still. Again, more med was pushed and comforted by his dad Ben went under again but only long enough to complete the LP. Needle out and bandaid in place, Ben yelled, "I want my fried pork skins!" As you may recall, about 2 LPs ago Ben's requisite post procedure snack changed from Funions to Fried Pork Skins and of course, the blueberry muffin.

He sucked down and apple juice and proved to his doc that he could stomach his snack. Everyone kept out of Ben's way while he ate for fear of losing a limb or two!

Ben gave all of us quite a scare. The nurses and doctors handled it all beautifully but afterward were admittedly shaken by the whole thing. For the past 3 LPs Ben has received 70cc of Propophol. This time them ended up giving him 100cc and that was barely enough! Strange thing is that he only weighs about 2 ounces more than the last time he got an LP.

Ben's ANC is coming down but very slowly. They're being very cautious about increasing his meds since he's so close to the end of treatment. They upped his 6-MP 25 percent hoping his ANC will fall to a more desired level.

We were told that Ben will have one more LP at the clinic and his last LP which will be done in August could coincide with his port removal. Ben is scheduled to be done with chemo on August 11, 2007. We've waited so long to hear this news but when we actually received it, rather than relief, we felt a tinge of panic. Chemo has been our best friend for the past 3 years, how will we manage without it?

Please keep Ben in your prayers during these last 5 months of treatment. Pray that he stays in remission and is given a clean bill of health come August. Many of you have asked me if Ben is cured. According to the doctors, a patient isn't considered cured until they are cancer-free 5 years from their last chemo treatment. In a way I feel we're still at the beginning of this journey. Please remember us in your prayers. You help keep us strong!

Love,
Belinda, Chris, Jeremy and Benjamin
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
And keep the following children in your prayers as well. They are going through extremely tough times.
Jake Rivers - relapsed ALL on May 24, 2005
Annie Coyle - diagnosed with Non-Hodgkin’s Lymphoma March, 2006 - Completed chemo June 2006
William Olson
Kylie Barry
Gwen Mason
Gracie Mae Malloy

And as always, our other friends who are fighting the battle:
Andrew Vassil
Will Hennessy
Zach Hoechstetter - Port removed and officially off treatment Sept. 5, 2005!!
Merrill King
Jack Sanders
Brady Wolfe
Brady Scott
Holly Moore
Ian Rice
Sami Petrucciani -- A new friend we met through Merrill King.

And for the angels who watch over us:
Ethan Alain - April 28, 2001 - Aug. 3, 2005
Coulter Hampton - March 29, 2005
Haley Thompson - February 3, 2003 – December 19, 2004
Shelby Prescott - December 30,1998 - October 22, 2004
Carter Martin - November 20, 1996 - September 12, 2004
Alex Scott - August 1st, 2004

PAST NEWS:

Jeremy has a website! Hope to see you there!

Jeremy and Ben making news in the Atlanta Journal Constitution!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
With the help of the following organizations, we are devoted to finding a cure:
CureSearch
CureSearch Athletics
Cure Childhood Cancer
The Leukemia Lymphoma Society

With the help of the following organizations, we are devoted to finding peace in every moment:
Make A Wish Foundation
Camp Sunshine
Lighthouse Family Retreat

Monday, February 5, 2007 10:32 AM EST

Hello everyone!

Hope you all watched the Super Bowl surrounded by family a friends. We had a small gathering of neighbors and such to watch Ben's Indiannapolis Colts ride to victory! Jeremy and I were bummed that our Bears didn't win, but . . . there's always next year?!

Anyway, Ben had a clinic visit on Friday and got a good report on his blood counts. Still a little too good for a kid on chemo. His ANC level should be around 1500 and Ben's is at 5200. It's great to help him fight off alot of the bugs going around school, but it's also an indication that his chemo dose is too low. So . . . we're up another half a pill of 6MP on Fri, Sat and Sun and Dr. B also increase the methotrexate from 6 to 6.5 pills weekly. Dr. B said that a couple of the reasons for his tolerance to the chemo could be that his body is getting to used to the therapy or it could be the fact that Ben is growing at such a rapid pace. His body is playing "catch up" from when his growth was supressed during the first 2 years of chemo. In any event, I'm praying that we get this dose right. It's tricky because if this increase drops his ANC too far then chemo would have to stop completely until his level is at a healthier range. So, we'll wait another 4 weeks to see if this increase does the trick. Next clinic date is scheduled for Feb. 28th. We'll keep you posted!

In the meatime, Ben is keeping himself busy with karate, basketball (which he LOVES!!) and will be starting his first season of baseball next month. He's doing really well, but please keep the prayers coming!


Love,
Belinda, Chris, Jeremy and Benjamin
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
And keep the following children in your prayers as well. They are going through extremely tough times.
Jake Rivers - relapsed ALL on May 24, 2005
Annie Coyle - diagnosed with Non-Hodgkin’s Lymphoma March, 2006 - Completed chemo June 2006
William Olson
Kylie Barry
Gwen Mason
Gracie Mae Malloy

And as always, our other friends who are fighting the battle:
Andrew Vassil
Will Hennessy
Zach Hoechstetter - Port removed and officially off treatment Sept. 5, 2005!!
Merrill King
Jack Sanders
Brady Wolfe
Brady Scott
Holly Moore
Ian Rice
Sami Petrucciani -- A new friend we met through Merrill King.

And for the angels who watch over us:
Ethan Alain - April 28, 2001 - Aug. 3, 2005
Coulter Hampton - March 29, 2005
Haley Thompson - February 3, 2003 – December 19, 2004
Shelby Prescott - December 30,1998 - October 22, 2004
Carter Martin - November 20, 1996 - September 12, 2004
Alex Scott - August 1st, 2004

PAST NEWS:

Jeremy has a website! Hope to see you there!

Jeremy and Ben making news in the Atlanta Journal Constitution!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
With the help of the following organizations, we are devoted to finding a cure:
CureSearch
CureSearch Athletics
Cure Childhood Cancer
The Leukemia Lymphoma Society

With the help of the following organizations, we are devoted to finding peace in every moment:
Make A Wish Foundation
Camp Sunshine
Lighthouse Family Retreat

Tuesday, January 9, 2007 12:27 AM EST

HOLIDAY GREETING CARD CORRECTION: For those of you who received our holiday card please be aware that Ben is NOT in his 19th month of remission, he's in his 32ND MONTH! Don't really know how I arrived at 19, but ask anyone who really knows me - math was never my favorite subject in school!


HAPPY NEW YEAR!

What a great holiday break we had. We saw a lot of family and friends, went to parties, opened presents, ate lots and lots of food and had so much fun!

Ben got his wish list filled from Santa and raked in several Star Wars toys and and new Lego Batman kit. Whatever the jolly man was unable to bring, the rest of the family stepped up and completed Ben's Christmas list order of toys.

Ben spent most of his Christmas break in full on "play time" mode. He was never without a toy in his hand or a friend by his side. No one plays harder than Ben!

We continued the tradition of hosting the annual Frosty Bowl flag football game. Attendance grew by more than 100 percent and we're only in our second year! 27 of Jeremy and Ben's closest friends came to battle it out for the championship. Unfortunately, the Smiths are yet to be on the winning team, but there's always next year! Here are some pictures of our playground event.

Ben stayed healthy through the holidays and Dr. B didn't actually jinx us by his comment last month. Ben stayed as far away from the hospital as possible! He did have a little ear infection but it wasn't anything that his regular pediatrician couldn't fix.

Last week Ben went in for his routine lumbar puncture to test his spinal fluid for leukemic cells. I just got a call from the doctor's office today telling me that Ben's CNS was clear! His ANC level is finally responding to the increase in meds and is down to the 2900 range. We'd still like to see it hovering over 1500, but at least we know it's coming down. Dr. B kept most of Ben's doses the same and only increased his methotrexate by 1.5 pills.

Ben is the picture of health as well as the picture of a typical five year old kid. We continue to be amazed by his endurance and energy. He's overcome some difficult obstacles in the past and even now his meds can take a toll on him daily, yet he persists. No one can play harder than Ben!

Thanks, as always for checking in and praying for Ben. We pray that all of you have a happy 2007!

Love,
Belinda, Chris, Jeremy and Benjamin
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
And keep the following children in your prayers as well. They are going through extremely tough times.
Jake Rivers - relapsed ALL on May 24, 2005
Annie Coyle - diagnosed with Non-Hodgkin’s Lymphoma March, 2006 - Completed chemo June 2006
William Olson
Kylie Barry
Gwen Mason
Gracie Mae Malloy

And as always, our other friends who are fighting the battle:
Andrew Vassil
Will Hennessy
Zach Hoechstetter - Port removed and officially off treatment Sept. 5, 2005!!
Merrill King
Jack Sanders
Brady Wolfe
Brady Scott
Holly Moore
Ian Rice
Sami Petrucciani -- A new friend we met through Merrill King.

And for the angels who watch over us:
Ethan Alain - April 28, 2001 - Aug. 3, 2005
Coulter Hampton - March 29, 2005
Haley Thompson - February 3, 2003 – December 19, 2004
Shelby Prescott - December 30,1998 - October 22, 2004
Carter Martin - November 20, 1996 - September 12, 2004
Alex Scott - August 1st, 2004

PAST NEWS:

Jeremy has a website! Hope to see you there!

Jeremy and Ben making news in the Atlanta Journal Constitution!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
With the help of the following organizations, we are devoted to finding a cure:
CureSearch
CureSearch Athletics
Cure Childhood Cancer
The Leukemia Lymphoma Society

With the help of the following organizations, we are devoted to finding peace in every moment:
Make A Wish Foundation
Camp Sunshine
Lighthouse Family Retreat

Monday, December 11, 2006 5:12 PM EST

Are you ready for the holidays?

I'm still trying to get and answer from Ben on what he wants for Christmas! I'm hoping Santa won't have to resort to giving Ben a gift certificate!

Ben had a great visit to the clinic last week. Dr. B gave Ben the most ticklish physical ever! It was pretty hysterical even for me and I was just a spectator! Ben got a dose of vincristine and we called it a day.

His blood levels are good. His ANC, in particular, is too good. A positive indication that Ben is receiving the correct doseage of chemo is when he has an ANC level no higher than 1500. Ben's ANC for the past 6 months has hovered around the 4000 mark. That's a healthy range for a healthy body but not for a body receiving chemotherapy. The doctors altered his doses of methotrexate for the first 4 months to no avail. This month and last month, we're toying around with his 6MP doses. We keep inching him up hoping that we find the right dose that brings his ANC down but doesn't bottom out. If his ANC falls too far, chemotherapy has to stop until it comes back up again. Sound pretty tricky? Yes, it is. Dr. B asked where we'd be during the holidays after he handed me the instructions that increased Ben's 6MP once again. I told him we'd be in town. He said, "Good, I'll save a bed for Ben at the hospital." (That's pediatric oncology humor at it's finest!) If this doseage takes Ben too low and he just happens to come in contact with a virus at the same time, yes, he could end up in the hospital. Just last week one of my friends whose daughters attend a school just a mile west of Ben's school said that over 100 kids were out one day with a virus. We're praying for easterly winds.

Nonetheless, all is well. Ben played his 2nd basketball game last Saturday and they clobbered the competition! Go Grayhounds! He's enthralled with baskteball and football at the moment. The Dallas Cowboys and the Arizona Cardinals are his favorite NFL teams - both featured Emmitt Smith - Ben's favorite player. Interestingly, Ben's limited exposure to Emmitt has only been through "Dancing with the Stars" and his Playstation NFL game! But he's still a true fan!

Thanks, as always for checking in a praying for Ben. We pray that all of you have a joyous, safe and healthy holiday season!

Love,
Belinda, Chris, Jeremy and Benjamin
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
And keep the following children in your prayers as well. They are going through extremely tough times.
Jake Rivers - relapsed ALL on May 24, 2005
Annie Coyle - diagnosed with Non-Hodgkin’s Lymphoma March, 2006 - Completed chemo June 2006
William Olson
Kylie Barry
Gwen Mason
Gracie Mae Malloy

And as always, our other friends who are fighting the battle:
Andrew Vassil
Will Hennessy
Zach Hoechstetter - Port removed and officially off treatment Sept. 5, 2005!!
Merrill King
Jack Sanders
Brady Wolfe
Brady Scott
Holly Moore
Ian Rice
Sami Petrucciani -- A new friend we met through Merrill King.

And for the angels who watch over us:
Ethan Alain - April 28, 2001 - Aug. 3, 2005
Coulter Hampton - March 29, 2005
Haley Thompson - February 3, 2003 – December 19, 2004
Shelby Prescott - December 30,1998 - October 22, 2004
Carter Martin - November 20, 1996 - September 12, 2004
Alex Scott - August 1st, 2004

PAST NEWS:

Jeremy has a website! Hope to see you there!

Jeremy and Ben making news in the Atlanta Journal Constitution!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
With the help of the following organizations, we are devoted to finding a cure:
CureSearch
CureSearch Athletics
Cure Childhood Cancer
The Leukemia Lymphoma Society

With the help of the following organizations, we are devoted to finding peace in every moment:
Make A Wish Foundation
Camp Sunshine
Lighthouse Family Retreat

Tuesday, November 14, 2006 12:43 PM EST

Hello! Thanks for checking in on Ben.

Ben had his lumbar puncture done last Thursday. BIG NEWS: post procedure snack has changed from Funions and a blueberry muffin to Fried Pork Rinds and a blueberry muffin! Chris said that if he'd only requested a Dr. Pepper to go with it we could name it "The Red Neck Post Procedure Snack"!

Everything went well although I'm still waiting to hear the results. I'll post it as soon as I get it. Actually, there was a slight change in how these procedures usually go. Ben actually felt a bit nauseous. I'm told it was probably due to the anesthesia. He usually tolerates it very well, but this time it made him slow down. He didn't go to school that day and was upset because he had to miss PE - his favorite subject after recess!

Ben's soccer season is over. They won every game they played (at least that's what we've told the kids!) He had a great time but quickly shifted gears and jumped into a basketball league. This is his first season and he seems to be enjoying it so far. He's so motivated that he has been out in the driveway shooting hoops all by himself. He's dedicated to his sport - whatever it may be at the time.

Karate For Kids is hosting a blood drive again for us next month in honor of Ben. They have been so supportive of our family and recognize the need for more blood donations. If you have time on Friday, Dec. 1st, please stop by anytime between 8am & 1pm and consider donating. I'll be there all day with donuts! And I may have Ben there making a special guest appearance during the lunch hour! Here is the address:
Karate for Kids
1165 Woodstock Rd Suite 600 (by Super Suppers)
Roswell, GA 30075
(770) 998-7717

As always, thanks for your continued prayers for Ben's complete healing. Sign our guestbook if you have a minute. We love hearing from all of you!

_________

Tuesday, November 14, 2006 2:23 PM EST
JUST IN: All's clear in Ben's CNS!
____________
Love,
Belinda, Chris, Jeremy and Benjamin
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
And keep the following children in your prayers as well. They are going through extremely tough times.
Jake Rivers - relapsed ALL on May 24, 2005
Annie Coyle - diagnosed with Non-Hodgkin’s Lymphoma March, 2006 - Completed chemo June 2006
William Olson
Kylie Barry
Gwen Mason
Gracie Mae Malloy

And as always, our other friends who are fighting the battle:
Andrew Vassil
Will Hennessy
Zach Hoechstetter - Port removed and officially off treatment Sept. 5, 2005!!
Merrill King
Jack Sanders
Brady Wolfe
Brady Scott
Holly Moore
Ian Rice
Sami Petrucciani -- A new friend we met through Merrill King.

And for the angels who watch over us:
Ethan Alain - April 28, 2001 - Aug. 3, 2005
Coulter Hampton - March 29, 2005
Haley Thompson - February 3, 2003 – December 19, 2004
Shelby Prescott - December 30,1998 - October 22, 2004
Carter Martin - November 20, 1996 - September 12, 2004
Alex Scott - August 1st, 2004

PAST NEWS:

Jeremy has a website! Hope to see you there!

Jeremy and Ben making news in the Atlanta Journal Constitution!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
With the help of the following organizations, we are devoted to finding a cure:
CureSearch
CureSearch Athletics
Cure Childhood Cancer
The Leukemia Lymphoma Society

With the help of the following organizations, we are devoted to finding peace in every moment:
Make A Wish Foundation
Camp Sunshine
Lighthouse Family Retreat

Monday, October 23, 2006 11:21 AM EST

I know, I know, too much time between updates! :)

We've been busy, to say the least. Ben's on a winning soccer team and can't get enough play time. He really enjoys playing and I'm sure will be asking to sign up for next season.

I took Ben to his clinic appointment on Wed. Oct 10th. He was to have an LP and receive vincristine. His appointment time was not until 10:30am, so he had to fast all morning long for the LP. We got to the clinic on time after dropping Jeremy off at school, purchased the requisite blueberry muffin and funions and signed in. About 10 mins. later, the scheduling lady came over to us and said, "Didn't I call you about a month ago to move Ben's appointment to tomorrow?" To which I replied with embrassment, "Yes, you did!" I suddenly felt a nudge from Ben and heard him say, "Can I have my funions now?" He doesn't miss a beat. But I obviously do! I rushed him to school to finish of the rest of the day.

The next day - the actual appointment day - Ben only had to fast for an 8:30am LP procedure. Although, it did take about an hour to run his CBC and hook him up to all the vitals machines in preparation for his procedure. It was about 10am when they decided to give him a breathing treatment for some wheezing they'd heard during his exam due to a slight cold he had. The anesthesiologist walked in after the treatment, took one last listen to Ben's chest and decided that Ben would not be having his LP that day. His breathing was already compromised by the congestion, so she did not want to complicate things any more than they already were. Ben got his dose of vincristine and we were done for the day. His LP will take place during next months appointment - the 9th to be exact and I'm positive about that!

On the lighter side of things, we just returned from what seems to be a developing annual trip to Chicago. Chris ran the marathon again this year. Although my thought is that success comes in finishing the race, Chris was still disappointed with his performance. I don't know his exact time, but I do know it was slower than last year. His heart is still in the right place, his body just decided to call it quits.

We arrived in Chicago on Wednesday night. We spent a few nights with Chris' brother, Russell. We took a stroll on the beach at Lake Michigan, visited the John Hancock Center and Navy Pier the first day. We had dinner with a college roommate, Eileen, and her husband Tim. They quickly scored points with the boys when they handed over Halloween goody bags as they walked into the restaurant. Ben pitted me against Eileen when asking if he could have his 5th piece of candy. I lost undeniably to Eileen who Ben instantly dubbed his "second mother"! After 2 pies of Chicago style pizza we topped the night off with a carriage ride through the streets of Chicago.

Friday we were up early to spend the day at the Museum of Science and Industry. What a place! Definitely put it on your "list of things to do" if you're ever in the area. The boys thoroughly enjoyed the exhibits, but found that we did not have enough time to see everything. That night we drove up to Glen Ellyn to visit the Rueths, some other college friends of mine, and their family. The boys got some desperately needed play time in with their kids, Molly and Jack. They played everything from spy games to Legos. After a few hours we headed back to Russell's condo and the boys passed out on the ride back to the city.

Saturday we spent at the Health Expo where Chris registered for the race. We also met up with Tim Coyle (father of Annie Coyle) the most successful CSA team member to date. He was running the marathon just for fun with his buddy who checked off this year's Chicago marathon as his 5oth marathon! Then we checked into a hotel that was closer to the race route and the boys spent a couple hours in the indoor pool. We had just enough time to make it to our friends, the Langhenrys (another college pal), who kindly threw a party for us that night. There were kids (all boys) ranging in age from 14 - 5 at the party. Jeremy and Ben were in their element! After snacks and pizza, the night finished in grand fashion with a chocolate fountain in which the boys drenched and devoured cookies, cake, bananas, marshmallows and whatever else they could get their hands on! Thanks, Langhenry's, for hosting the bash again this year!

Sunday was race day. Chris left around 6:30am to make it to the 8am start. The boys and I watched the race on TV while we packed and got ready for the day. We met Russell at 10:30am and headed over to mile 21 where we would try and catch our first glimpse of Chris. We were unsure of his time at that point and left after 30 mins. thinking we had missed him. Fortunately, on our way back to the hotel, we had to stop at mile 25 because of all the runners crossing the street and Chris found us among the crowd! He told us that he'd seen our friend, Mary Fran, early in the race who was out to cheer him on and saw the Langhenry's at mile 17. He had quite a support group and told me that it definitely made it easier for him to get to the finish line.

Again, we had a wonderful time in Chicago. The boys felt sad as we left and asked when we would be returning.

Thanks to everyone in Chicago for taking the time out for us during our visit. It truly would not be as fun for us if you weren't there!

As always, thanks for your continued prayers for Ben's complete healing. Sign our guestbook if you have a minute. We love hearing from all of you!

Love,
Belinda, Chris, Jeremy and Benjamin
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
And keep the following children in your prayers as well. They are going through extremely tough times.
Jake Rivers - relapsed ALL on May 24, 2005
Annie Coyle - diagnosed with Non-Hodgkin’s Lymphoma March, 2006 - Completed chemo June 2006
William Olson
Kylie Barry
Gwen Mason
Gracie Mae Malloy

And as always, our other friends who are fighting the battle:
Andrew Vassil
Will Hennessy
Zach Hoechstetter - Port removed and officially off treatment Sept. 5, 2005!!
Merrill King
Jack Sanders
Brady Wolfe
Brady Scott
Holly Moore
Ian Rice
Sami Petrucciani -- A new friend we met through Merrill King.

And for the angels who watch over us:
Ethan Alain - April 28, 2001 - Aug. 3, 2005
Coulter Hampton - March 29, 2005
Haley Thompson - February 3, 2003 – December 19, 2004
Shelby Prescott - December 30,1998 - October 22, 2004
Carter Martin - November 20, 1996 - September 12, 2004
Alex Scott - August 1st, 2004

PAST NEWS:

Jeremy has a website! Hope to see you there!

Jeremy and Ben making news in the Atlanta Journal Constitution!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
With the help of the following organizations, we are devoted to finding a cure:
CureSearch
CureSearch Athletics
Cure Childhood Cancer
The Leukemia Lymphoma Society

With the help of the following organizations, we are devoted to finding peace in every moment:
Make A Wish Foundation
Camp Sunshine
Lighthouse Family Retreat

Sunday, September 24, 2006 8:05 AM EST

OK, can you tell we've been busy? I haven't updated in a while but here it is!

Ben had a clinic appointment about 2 weeks ago. They bumped it up a day because he was complaining of an ear ache. Yup, you guessed it. It was, according to the nurse, a "rip-roaring" infection. Fortunately, the pain only lasted a few hours for Ben. He was quickly given an antibiotic and we were sent on our way. He checked out fine otherwise but we were not able to judge whether or not the new dose of methotrexate was the right amount. All his levels were high because of the infection. So, we'll try again at his next appointment which is on Oct. 11 and will also include and LP procedure in the twinkly star room.

Ben has been very busy lately. He's already had two soccer games (both of which, if you ask him, their team has won), several play dates after school and karate. We also went to Callaway Gardens to cheer on Jeremy and Chris as they rode in the MS150 bike challenge a couple of weeks ago. Afterward, we stopped at the Wild Animal Safari. The kids really got a kick out of that! We drove through several hundreds of acres filled with antelope, deer, zebra, giraffe, buffalo, etc. The boys threw food and cracked up at the huge animal tongues that made their way into the van! It was a slobbery mess but so much fun!

Other than that, Ben is loving school more and more each day. He's got a best pal named Nick. Ben's teacher told me that he is very well behaved at school, he is smart and in particular, has very good handwriting. YAY!

As always, thanks for your continued prayers for Ben's complete healing. Sign our guestbook if you have a minute. We love hearing from all of you!

Love,
Belinda, Chris, Jeremy and Benjamin
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
And keep the following children in your prayers as well. They are going through extremely tough times.
Jake Rivers - relapsed ALL on May 24, 2005
Annie Coyle - diagnosed with Non-Hodgkin’s Lymphoma March, 2006 - Completed chemo June 2006
William Olson
Kylie Barry
Gwen Mason
Gracie Mae Malloy

And as always, our other friends who are fighting the battle:
Andrew Vassil
Will Hennessy
Zach Hoechstetter - Port removed and officially off treatment Sept. 5, 2005!!
Merrill King
Jack Sanders
Brady Wolfe
Brady Scott
Holly Moore
Ian Rice
Sami Petrucciani -- A new friend we met through Merrill King.

And for the angels who watch over us:
Ethan Alain - April 28, 2001 - Aug. 3, 2005
Coulter Hampton - March 29, 2005
Haley Thompson - February 3, 2003 – December 19, 2004
Shelby Prescott - December 30,1998 - October 22, 2004
Carter Martin - November 20, 1996 - September 12, 2004
Alex Scott - August 1st, 2004

PAST NEWS:

Jeremy has a website! Hope to see you there!

Jeremy and Ben making news in the Atlanta Journal Constitution!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
With the help of the following organizations, we are devoted to finding a cure:
CureSearch
CureSearch Athletics
Cure Childhood Cancer
The Leukemia Lymphoma Society

With the help of the following organizations, we are devoted to finding peace in every moment:
Make A Wish Foundation
Camp Sunshine
Lighthouse Family Retreat

Monday, September 4, 2006 10:57 AM EST

YAY! It's official . . . Ben LOVES kindergarten!

By the 8th day of school he was jumping out of the car at carpool and racing Jeremy into school! I've caught a couple of glimpses of him during the times I volunteer at the school and he is either really paying attention to what's going on in class or really hamming it up for his classmates. I was in the cafeteria one day (found out you don't need a hairnet if you're not actually working in the kitchen - phew!) and told a couple of girls in Ben's class that I was his mother. "NO WAY!" they shrieked, "He's so silly. He acts like a monkey!" Now, if what they say is true, they are describing Benjamin to a tee and confirming to me that he really is having a good time.

A week ago last Friday was the kindergartener's first time at the weekly school mass. They were briefed on proper mass behavior and ettiquette for a full week then were allowed to participate. All the kindergarten mothers sat in quite fear as the priest made the rounds asking the children what they liked most about school. Jeremy and I held our breath as Ben gave his answer loud enough for the heavens to hear, "Uh, I like school because, because, I like doing stuff." Woo! What a great answer! Sligtly vague but very positive!

Ben was the front page article on August 21st of the Marietta Daily Journal. I can't seem to find the online article for you to view, but basically it was an article about Ben's battle and how blood donations are crucial for the continued treatment of cancer patients. Without sufficient blood chemistry levels, chemotherapy stops until a transfusion can take place. Transfusions can only happen if there is blood in stock. Unfortunately, Atlanta is an import city. There is not sufficient blood donation in our metro area to fullfill our needs.

September is Childhood Cancer Awareness Month (as well as some adult cancers including prostate and gynecologic). Please consider making a blood donation this month. Your efforts at the very least will help sustain a life.

This weekend is the long Labor Day weekend and we've sat around the house doing pratically nothing. But we're more than happy doing it. The boys got out of school early on Friday and we spent the rest of the day with Will and Nick Zondlak from school - went to Burger King, played putt putt, a few arcade games, out for ice cream then back to our house to finish out the day with light saber battles. But that night, Ben was coughing up a storm. He'd caught a cold. The next morning it had turned in to a coupy cough and a runny nose. We're trying to get out a little here and there, but taking it easy for the most part. I'd hate for Ben to miss a single day of his new favorite activity . . . . Kindgergarten!

As always, thanks for your continued prayers for Ben's complete healing. Sign our guestbook if you have a minute. We love hearing from all of you!

Love,
Belinda, Chris, Jeremy and Benjamin
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
And keep the following children in your prayers as well. They are going through extremely tough times.
Jake Rivers - relapsed ALL on May 24, 2005
Annie Coyle - diagnosed with Non-Hodgkin’s Lymphoma March, 2006 - Completed chemo June 2006
William Olson
Kylie Barry
Gwen Mason
Gracie Mae Malloy

And as always, our other friends who are fighting the battle:
Andrew Vassil
Will Hennessy
Zach Hoechstetter - Port removed and officially off treatment Sept. 5, 2005!!
Merrill King
Jack Sanders
Brady Wolfe
Brady Scott
Holly Moore
Ian Rice
Sami Petrucciani -- A new friend we met through Merrill King.

And for the angels who watch over us:
Ethan Alain - April 28, 2001 - Aug. 3, 2005
Coulter Hampton - March 29, 2005
Haley Thompson - February 3, 2003 – December 19, 2004
Shelby Prescott - December 30,1998 - October 22, 2004
Carter Martin - November 20, 1996 - September 12, 2004
Alex Scott - August 1st, 2004

PAST NEWS:

Jeremy has a website! Hope to see you there!

Jeremy and Ben making news in the Atlanta Journal Constitution!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
With the help of the following organizations, we are devoted to finding a cure:
CureSearch
CureSearch Athletics
Cure Childhood Cancer
The Leukemia Lymphoma Society

With the help of the following organizations, we are devoted to finding peace in every moment:
Camp Sunshine
Lighthouse Family Retreat

Sunday, August 20, 2006 7:25 PM EST

Okay. We're not going to count the first week of school. And we might not count the second either. The third week should give us a better assessment of whether Ben likes going to school or not.

The first week everything was brand new and very big from his last school. So many things to get use to. But he also had a clinic appointment the morning of his second full day of school. So when we were done, I dropped him off just in time for lunch. He clung to me like white on rice, crying and screaming that he didn't want to go to school. The teachers assistant came out and peeled Ben off of my leg and took him to class. That was hard.

The third day was interesting. Just as we pulled into the carpool line for drop off Ben said he had to go to the bathroom. So, instead of being scared as he walked in, he was focused on accomplishing his mission to find the nearest bathroom. That went surprisingly well. Then he started his prednisone.

The steroid makes him an emotional wreck as soon as it's on board. Friday was traumatic. He just didn't want to go. As I walked the boys to the school (Ben won't get out in carpool line) I could see the fear in his eyes. Just as we got to the door he reached for my leg to hold on tight but the carpool attendants saw us coming. They snatched him up before he could get a good grip and carried him into school. It sounds pretty harsh, but really they are very caring people and are trying to do what's best. And each day when I pick him up he says that he's had a great day. He's happy and tells me all about school. It's just that darned steroid.

Here's a funny thing. On Wednesday Ben ordered a hot lunch from the cafeteria - a very big kid kind of thing to do. When he got home I asked him how it was. He said it was great. He ate all of his lasagna, peaches, bread stick and chocolate milk (don't you love that combo?!). And after that he said he puked in his mouth! What?! I asked if the teachers saw him and he said that he just cleaned himself up with a couple of napkins. That night we had ziti for dinner. He couldn't quite get himself convinced that it was different enough from what he had for lunch. So he opted for a pb&j instead!

Hopefully tomorrow will be better. It's his last day on the steroid and he usually changes back to sweet little Ben shortly after he's done.

The clinic visit went well by the way. Although his ANC is on the high end around 3000+. They think the methotrexate is the culprit so they've lowered his dose again but by only a half a tablet. Hope it works!

As always, thanks for your continued prayers for Ben's complete healing. Sign our guestbook if you have a minute. We love hearing from all of you!

Love,
Belinda, Chris, Jeremy and Benjamin
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
And keep the following children in your prayers as well. They are going through extremely tough times.
Jake Rivers - relapsed ALL on May 24, 2005
Annie Coyle - diagnosed with Non-Hodgkin’s Lymphoma March, 2006 - Completed chemo June 2006
William Olson
Kylie Barry
Gwen Mason
Gracie Mae Malloy

And as always, our other friends who are fighting the battle:
Andrew Vassil
Will Hennessy
Zach Hoechstetter - Port removed and officially off treatment Sept. 5, 2005!!
Merrill King
Jack Sanders
Brady Wolfe
Brady Scott
Holly Moore
Ian Rice
Sami Petrucciani -- A new friend we met through Merrill King.

And for the angels who watch over us:
Ethan Alain - April 28, 2001 - Aug. 3, 2005
Coulter Hampton - March 29, 2005
Haley Thompson - February 3, 2003 – December 19, 2004
Shelby Prescott - December 30,1998 - October 22, 2004
Carter Martin - November 20, 1996 - September 12, 2004
Alex Scott - August 1st, 2004

PAST NEWS:

Jeremy has a website! Hope to see you there!

Jeremy and Ben making news in the Atlanta Journal Constitution!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
With the help of the following organizations, we are devoted to finding a cure:
CureSearch
CureSearch Athletics
Cure Childhood Cancer
The Leukemia Lymphoma Society

With the help of the following organizations, we are devoted to finding peace in every moment:
Camp Sunshine
Lighthouse Family Retreat

Tuesday, August 15, 2006 7:33 PM EST

He made it! Ben attended his first full day of kindergarten without a hitch!

I woke him up bright and early this morning anticipating a difficult start and a little anxiety over attending "big kids" school. Ben rolled out of bed with relative ease. He grabbed his pile of clothes(uniform)and began getting dressed without even being told. He headed downstairs for breakfast and consumed a healthy portion of eggs and bacon, apple juice and a taste of a blueberry muffin top. He put on his shoes with only slight resistance(it's a much argued about topic these days as he only wants to wear his sandals), brushed his teeth, grabbed his lunch box and bag and buckled himself safely in the car.

We had normal conversation in the car. I intentionally did not talk about school in hopes of calming and nerves he may have had. As we entered the school, we ran into Fr. Frank who willing held out his hand for one of Ben's massive high fives. The boys and Fr. Frank posed for a picture and we headed to the classrooms. Jeremy eased right into the routine and collected his friends as he walked down the hall. He took off and we did not see him until carpool at the end of the day! Chris and I walked Ben to his classroom which was already whirring with excitement. Ben hung up his bag, found his seat, posed for a picture with his teacher, Miss Flowers, and seemed quite comfortable. It was only when I kissed him on the head and said "I'll see you later" did he break down in tears. He held on to me as tightly as he could and sobbed. Since he was crying, then I couldn't cry - he beat me to it! I quickly consoled him and scooted out of the room as the bell rang signaling the start of the school day.

I was anxious to see him at carpool at the end of the day. Would he still be crying? Would he be angry that I'd left him? Not at all. He was all smiles and told me he had a great day at school. Such a big kid.

Tomorrow Ben goes to the clinic in the morning for vincristine and a physical. Then I'll take him to school just in time for lunch. Tonight at dinner he cried again telling me that he did not want to go to school without me. I suggested that if I went with him, he should just sit on my lap all day since there was not seat for me in the classroom. He looked at me with hope in his eyes and said, "maybe you can just work in the lunchroom." I'm off to buy a hairnet in the morning!

As always, thanks for your continued prayers for Ben's complete healing. Sign our guestbook if you have a minute. We love hearing from all of you!

Love,
Belinda, Chris, Jeremy and Benjamin
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
And keep the following children in your prayers as well. They are going through extremely tough times.
Jake Rivers - relapsed ALL on May 24, 2005
Annie Coyle - diagnosed with Non-Hodgkin’s Lymphoma March, 2006 - Completed chemo June 2006
William Olson
Kylie Barry
Gwen Mason
Gracie Mae Malloy

And as always, our other friends who are fighting the battle:
Andrew Vassil
Will Hennessy
Zach Hoechstetter - Port removed and officially off treatment Sept. 5, 2005!!
Merrill King
Jack Sanders
Brady Wolfe
Brady Scott
Holly Moore
Ian Rice
Sami Petrucciani -- A new friend we met through Merrill King.

And for the angels who watch over us:
Ethan Alain - April 28, 2001 - Aug. 3, 2005
Coulter Hampton - March 29, 2005
Haley Thompson - February 3, 2003 – December 19, 2004
Shelby Prescott - December 30,1998 - October 22, 2004
Carter Martin - November 20, 1996 - September 12, 2004
Alex Scott - August 1st, 2004

PAST NEWS:

Jeremy has a website! Hope to see you there!

Jeremy and Ben making news in the Atlanta Journal Constitution!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
With the help of the following organizations, we are devoted to finding a cure:
CureSearch
CureSearch Athletics
Cure Childhood Cancer
The Leukemia Lymphoma Society

With the help of the following organizations, we are devoted to finding peace in every moment:
Camp Sunshine
Lighthouse Family Retreat

Wednesday, August 2, 2006 11:10 AM EST

Eleven more days until kindergarten!

Although I'm sure I will shed a few tears as I watch Ben enter the school as most mothers I know do, I will also be joyful knowing that Ben has reached another milestone - one that we were uncertain of two years ago.

He has been in great health and beams with all the exhilaration a carefree 5 year old should. We had a fantastic time in Tulsa - even enjoying the 12 hour drive. We left Atlanta right after Ben's LP procedure and he didn't complain at all about any pain or discomfort. His only gripe was - "Are we there yet?!" Ben received his regular dose of methotrexate and vincristine. I have not called yet to ask the results of the lp but have it on my list to do today. I will post the news as soon as I have confirmation.

The boys picked up a new hobby while we were in Tulsa visting Nana and Pop Pop - cap gun battles. Nothing tugs harder at my heart strings than watching my sons chase their grandfather around the yard, guns blazing, cries and screams of the wounded and the inevitable "You're Dead!" exlamation signaling the end of the showdown. Whatever happened to a nice little game of freeze tag?

We also visited the Tulsa Air and Space Museum, played a few rounds of golf, swam, visted friends, went to the play ground, hit the amusement park and other activities which are only fun when Nana and Pop Pop are around. It was evident that our visit was long overdue when the night we returned home Ben cried saying that he missed Tulsa. Fortunatetly, we were able to convince Ben that Tulsa wouldn't be going anywhere soon, so he was able to fall asleep. Here are more pictures of our visit.

As always, thanks for your continued prayers for Ben's complete healing. Sign our guestbook if you have a minute. We love hearing from all of you!

Sunday, August 6, 2006 9:36 PM EST

UPDATE:
Ben's CNS is clear!!

Love,
Belinda, Chris, Jeremy and Benjamin
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
And keep the following children in your prayers as well. They are going through extremely tough times.
Jake Rivers - relapsed ALL on May 24, 2005
Annie Coyle - diagnosed with Non-Hodgkin’s Lymphoma March, 2006 - Completed chemo June 2006
William Olson
Kylie Barry
Gwen Mason
Gracie Mae Malloy

And as always, our other friends who are fighting the battle:
Andrew Vassil
Will Hennessy
Zach Hoechstetter - Port removed and officially off treatment Sept. 5, 2005!!
Merrill King
Jack Sanders
Brady Wolfe
Brady Scott
Holly Moore
Ian Rice
Sami Petrucciani -- A new friend we met through Merrill King.

And for the angels who watch over us:
Ethan Alain - April 28, 2001 - Aug. 3, 2005
Coulter Hampton - March 29, 2005
Haley Thompson - February 3, 2003 – December 19, 2004
Shelby Prescott - December 30,1998 - October 22, 2004
Carter Martin - November 20, 1996 - September 12, 2004
Alex Scott - August 1st, 2004

PAST NEWS:

Jeremy has a website! Hope to see you there!

Jeremy and Ben making news in the Atlanta Journal Constitution!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
With the help of the following organizations, we are devoted to finding a cure:
CureSearch
CureSearch Athletics
Cure Childhood Cancer
The Leukemia Lymphoma Society

With the help of the following organizations, we are devoted to finding peace in every moment:
Camp Sunshine
Lighthouse Family Retreat

Tuesday, July 18, 2006 9:30 AM EST

Hi all!

I was given a friendly reminder yesterday that I had not updated Ben's website in nearly a month! No news is good news?!

Ben has been enjoying his summer. He had an awesome time at basketball camp and keeps himself busy at home by practicing with big brother, Jeremy. Ben's bike riding skills are being honed and unbeknownst to himself, his golf game is getting so much better! Ben's been following us to Jeremy's tournaments this summer. Golf's not really Ben's game, but he gives it a try and keeps up even in the sweltering heat.

We travel to Oklahoma this week to visit Nana and Pop Pop for 10 days. They're hoping to do a lot of "cowboy and indian" stuff - whatever that entails. We're looking forward to having a great time. The last time we visited was the winter before Ben's diagnosis, so we're long overdue.

Ben has a clinic appointment the day we leave for OK. Unfortunately, it includes a lumbar puncture where they will take a sample of his spinal fluid and inject a dose of methotrexate. He's usually up and running shortly after these procedures, but it's never been the scenario where he had to get in a car for 16 hours to go on a family vacation either. We'll just have to play it by ear. Hopefully the excitement of seeing Nana and Pop Pop will win over any discomfort he may have. We've also purchased all the creature comforts for the long drive, but depending on how Ben feels, an overnighter half way through the trip may be inevitable. Can't say I wouldn't mind taking a break myself!

Hope everyone out there is doing well! We'll let you know the results of Ben's LP when we get them.

As always, thanks for your continued prayers for Ben's complete healing. Sign our guestbook if you have a minute. We love hearing from all of you!

Love,
Belinda, Chris, Jeremy and Benjamin
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
And keep the following children in your prayers as well. They are going through extremely tough times.
Jake Rivers - relapsed ALL on May 24, 2005
Annie Coyle - diagnosed with Non-Hodgkin’s Lymphoma March, 2006 - Completed chemo June 2006
William Olson
Kylie Barry
Gwen Mason
Gracie Mae Malloy

And as always, our other friends who are fighting the battle:
Andrew Vassil
Will Hennessy
Zach Hoechstetter - Port removed and officially off treatment Sept. 5, 2005!!
Merrill King
Jack Sanders
Brady Wolfe
Brady Scott
Holly Moore
Ian Rice
Sami Petrucciani -- A new friend we met through Merrill King.

And for the angels who watch over us:
Ethan Alain - April 28, 2001 - Aug. 3, 2005
Coulter Hampton - March 29, 2005
Haley Thompson - February 3, 2003 – December 19, 2004
Shelby Prescott - December 30,1998 - October 22, 2004
Carter Martin - November 20, 1996 - September 12, 2004
Alex Scott - August 1st, 2004

PAST NEWS:

Jeremy has a website! Hope to see you there!

Jeremy and Ben making news in the Atlanta Journal Constitution!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
With the help of the following organizations, we are devoted to finding a cure:
CureSearch
CureSearch Athletics
Cure Childhood Cancer
The Leukemia Lymphoma Society

With the help of the following organizations, we are devoted to finding peace in every moment:
Camp Sunshine
Lighthouse Family Retreat

Thursday, June 22, 2006 1:31 PM EST

Hope everyone is having a great summer! Ben certainly is!

He went to the clinic yesterday and checked out well. His ANC is on the low side, so Dr. Crosswell dropped his methotrexate back to 50nd he also got a dose of vincristine. Ben's gained a pound in the last month and contiunes to add centimeters to his height.

Ben's next appointment is July 20th. He'll get an LP and vincristine. We'll be sure to post results then.

Ben's summer has been exciting. He's learned to swim like a fish and can't get enough of it! We figured out that he's swam in 7 different pools this summer and with our neighbors building one this month, he's sure to add another to the list! He's asked if he can take diving lessons so that he can perfect his favorite dive . . . The Cannon Ball!

We spent Memeorial Day week in Hilton Head with my family. Jeremy and Ben had a full week with their cousin, Gavin. We're hoping to make it annual event. The boys went swimming, fishing, body surfing, crabbing, painting at the Art Cafe, bike riding, golfing and so much more. What a great way to start off summer break!

Next week Ben starts basketball camp. It will be interesting to see how he takes to life as a big kid. The camp is only for 3 days, but it is from 9am - 3pm! That's the longest he's ever been on his own. He does have a few friends in the camp, so hopefully he'll be able to tough it out.

Ben just tested for his brown striped belt in karate. He's really getting a handle on all of his moves. The coordination, balance and confidence he is learning at the school is tremendous.

So, as you can see, life remains "normal". We are busy as usual, but we wouldn't have it any other way. Fun, fun, fun!

As always, thanks for your continued prayers for Ben's complete healing. Sign our guestbook if you have a minute. We love hearing from all of you!

Love,
Belinda, Chris, Jeremy and Benjamin
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
And keep the following children in your prayers as well. They are going through extremely tough times.
Jake Rivers - relapsed ALL on May 24, 2005
Annie Coyle - diagnosed with Non-Hodgkin’s Lymphoma March, 2006
William Olson
Kylie Barry
Gwen Mason
Gracie Mae Malloy

And as always, our other friends who are fighting the battle:
Andrew Vassil
Will Hennessy
Zach Hoechstetter - Port removed and officially off treatment Sept. 5, 2005!!
Merrill King
Jack Sanders
Brady Wolfe
Brady Scott
Holly Moore
Ian Rice
Sami Petrucciani -- A new friend we met through Merrill King.

And for the angels who watch over us:
Ethan Alain - April 28, 2001 - Aug. 3, 2005
Coulter Hampton - March 29, 2005
Haley Thompson - February 3, 2003 – December 19, 2004
Shelby Prescott - December 30,1998 - October 22, 2004
Carter Martin - November 20, 1996 - September 12, 2004
Alex Scott - August 1st, 2004

PAST NEWS:

Jeremy has a website! Hope to see you there!

Jeremy and Ben making news in the Atlanta Journal Constitution!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
With the help of the following organizations, we are devoted to finding a cure:
CureSearch
CureSearch Athletics
Cure Childhood Cancer
The Leukemia Lymphoma Society

With the help of the following organizations, we are devoted to finding peace in every moment:
Camp Sunshine
Lighthouse Family Retreat

Saturday, May 27, 2006 12:35 AM EST

Hi all,
Ben’s clinic visit last Wednesday went well. His counts were all good. So good, in fact, that they increased his methotrexate back to 100%. He got a dose of vincristine and we were out of there. Apparently, we missed seeing Jake only by an hour. Darn!

We're off tomorrow to begin our summer vacation. We'll spend a week down in Hilton Head with the Perez family and try to have as much fun as we can handle. Thanks, Nana and Pop Pop for the condo!

Here’s some news . . . Dr. Crosswell (doc who first diagnosed Ben) will be leaving in 3 weeks to work at a hospital in Greenville, SC. We will surely miss him and feel a little vulnerable with him gone but we plan on keeping in touch. He has arranged to conduct a symposium for the Children’s Oncology Group in the fall and will present cases such as Ben’s in hopes of gaining their support to begin research into these rare leukemias. Hopefully, CureSearch Athletics will help fund his project.

Ben’s next visit is on June 21st. As always, we’ll keep you posted.


As always, thanks for your continued prayers for Ben's complete healing. Sign our guestbook if you have a minute. We love hearing from all of you!

Love,
Belinda, Chris, Jeremy and Benjamin
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
And keep the following children in your prayers as well. They are going through extremely tough times.
Jake Rivers - relapsed ALL on May 24, 2005
Annie Coyle - diagnosed with Non-Hodgkin’s Lymphoma March, 2006
William Olson
Kylie Barry
Gwen Mason
Gracie Mae Malloy

And as always, our other friends who are fighting the battle:
Andrew Vassil
Will Hennessy
Zach Hoechstetter - Port removed and officially off treatment Sept. 5, 2005!!
Merrill King
Jack Sanders
Brady Wolfe
Brady Scott
Holly Moore
Ian Rice
Sami Petrucciani -- A new friend we met through Merrill King.

And for the angels who watch over us:
Ethan Alain - April 28, 2001 - Aug. 3, 2005
Coulter Hampton - March 29, 2005
Haley Thompson - February 3, 2003 – December 19, 2004
Shelby Prescott - December 30,1998 - October 22, 2004
Carter Martin - November 20, 1996 - September 12, 2004
Alex Scott - August 1st, 2004

PAST NEWS:

Jeremy has a website! Hope to see you there!

Jeremy and Ben making news in the Atlanta Journal Constitution!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
With the help of the following organizations, we are devoted to finding a cure:
CureSearch
CureSearch Athletics
Cure Childhood Cancer
The Leukemia Lymphoma Society

With the help of the following organizations, we are devoted to finding peace in every moment:
Camp Sunshine
Lighthouse Family Retreat

Thursday, May 18, 2006 10:19 PM CDT

Benjamin is 5 years old today! And we couldn't be happier!! We celebrated his birthday this past Saturday with all his preschool friends at Jump Zone. They had a blast!

Next clinic date is May 24th. As always, thanks for your continued prayers for Ben's complete healing. Sign our guestbook if you have a minute. We love hearing from all of you!

Love,
Belinda, Chris, Jeremy and Benjamin
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
And keep the following children in your prayers as well. They are going through extremely tough times.
Jake Rivers - relapsed ALL on May 24, 2005
Annie Coyle - diagnosed with Non-Hodgkin’s Lymphoma March, 2006
William Olson
Kylie Barry
Gwen Mason
Gracie Mae Malloy

And as always, our other friends who are fighting the battle:
Andrew Vassil
Will Hennessy
Zach Hoechstetter - Port removed and officially off treatment Sept. 5, 2005!!
Merrill King
Jack Sanders
Brady Wolfe
Brady Scott
Holly Moore
Ian Rice
Sami Petrucciani -- A new friend we met through Merrill King.

And for the angels who watch over us:
Ethan Alain - April 28, 2001 - Aug. 3, 2005
Coulter Hampton - March 29, 2005
Haley Thompson - February 3, 2003 – December 19, 2004
Shelby Prescott - December 30,1998 - October 22, 2004
Carter Martin - November 20, 1996 - September 12, 2004
Alex Scott - August 1st, 2004

PAST NEWS:

Jeremy has a website! Hope to see you there!

Jeremy and Ben making news in the Atlanta Journal Constitution!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
With the help of the following organizations, we are devoted to finding a cure:
CureSearch
CureSearch Athletics
Cure Childhood Cancer
The Leukemia Lymphoma Society

With the help of the following organizations, we are devoted to finding peace in every moment:
Camp Sunshine
Lighthouse Family Retreat

Monday, April 17, 2006 5:21 PM EST

What a vacation we had!! It was certainly nothing short of a dream come true.

But of course, our journey had to begin with a trip to the ER the day before we boarded the cruise ship! Ben was coloring Saturday morning and told me that there was something "wierd" about his eyes. He seemed to have suffered slight loss of vision in his left eye. It didn't last long, but shook me up nonetheless. About 2 hours later he started complaining that he had a headache. Vision loss? Headache? Didn't seem like a good combination to me. We called the doc on call and she told us to go straight to the ER. But in true Benjamin fashion, he checked out well and was given a full authorization to go on his cruise. The concensus at the hospital was that if Ben was truly experiencing a neurological event, then the symptoms would have continued. By the time Ben reached the hospital, his vision was clear and the headache subsided.
So, we rushed home to finish up our packing and we set sail the next afternoon.

The Disney Wonder was a fantastic cruise ship styled in the tradition of the classic ocean liners from the 30's and 40's. Here are some highlights from our trip:

Sunday:

• toured the ship
  
• played ping pong
  
• mandatory lifeboat practice
  
• attended the bon voyage party atop the Disney Wonder
  
• ate way too much rich food for dinner
  
• tried our hand at bingo
  
• Jeremy and I attended a magician show while Chris and Ben retired to the stateroom and rested for the excitement to come
  
  Monday:
  
• docked at Nassau
  
• swam with dolphins - well, Jeremy and Ben decided just to watch Chris and I do it, but I think they still had fun
  
• Jeremy and Ben attended the Oceaneers Club and entered Pirate boot camp - Capt. Hook made a special appearance to check up on his new recruits
  
• ate way too much rich food for dinner
  
• played at the arcade
  
• attended the evening show - "Hercules"
  
  Tuesday:
  
• docked at Castaway Cay (Disney's private island)
  
• sunrise basketball game
  
• swam at the Goofy pool
  
• played on the beach
  
• souvenier shopping
  
• water slide at the Mickey pool
  
• ate way too much rich food for dinner
  
• played at the arcade
  
• attended the evening show - "The Golden Mickeys"
  
• attended the Pirate dance party and fireworks
  
• late night dessert buffet
  
  Wednesday:
  
• full day at sea
  
• woke up late
  
• entered the Mickey 200 vegetable car races - won prize for best team name - "The Super Slick Carrot Sticks"
  
• entered a scavenger hunt
  
• played jackpot bingo......(drum roll)...........Ben won $510!!!
  
• more souvenier shopping
  
• played at the arcade
  
• ate way too much rich food for dinner
  
• went to the comedy club
  
• attended the evening show - "Disney Dreams"
  
• packed to go home
  

Sunday, April 2, 2006 8:30 PM EST

It's exactly two years today that Ben was diagnosed with leukemia. Today he remains in remission but is still receiving chemotherapy daily with his monthly visits to the clinic. As happy as I am with Ben's current health status, I can't help but hold back the cheers and ovation for fear of jinxing the good thing we have going. We've heard of far too many children relapsing around this time during their treatment and that fact always haunts me. So, suffice it to say, Ben is holding strong.

Meghan and Jackie from the Make a Wish Foundation came by the house yesterday and greeted Ben with a fist full of balloons, presents and a chocolate cake that read, “Happy Wish Day!” Their bon voyage party was a big hit! Both of the boys received gifts while Chris and I were given last minute details about the trip. They’ve taken care of everything from parking at the airport to tipping our cruise attendants. This trip will surely be a “dream come true” for all of us. I can hardly wait to see the boys’ expressions when they catch their first glimpse of the enormous ship they will be boarding. I’m certain it will knock them off their feet!

We were going to leave tomorrow for North Carolina to visit cousin Gavin but Ben woke up with a croupy cough and runny nose. He’s been coughing all day so we thought it would be best to stay close to home today and spare Gavin and his folks any unecessary germs. Hopefully, Ben will start feeling better soon and we can get up to NC for a couple of days before our cruise.

Well, that’s it for now. I’ll be sure to update the website as soon as we return from our Disney cruise and include a boat load of pictures to boot!

Ben’s next clinic date is April 19th.
______________________________________

Monday, April 3, 2006 2:30PM EST

Oh what a difference a day makes! We’re taking it easy today and might not go to Ashville this week. Ben had a fever of 101 this morning and I took him to the clinic. His ANC was down to 690 (500 and less means hospital admission), so they gave him some Rocephan and Tylenol and instructed us to cut his daily chemo in half then sent us home. He said he’s feeling better but I think it’s just the Tylenol. Hopefully he’ll get over this thing in the next couple of days so that he can still make the cruise. He’s due at the clinic on Friday for another CBC just to check his ANC again.

As always, thanks for your continued prayers for Ben's complete healing. Sign our guestbook if you have a minute. We love hearing from all of you!

Love,
Belinda, Chris, Jeremy and Benjamin
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
And keep the following children in your prayers as well. They are going through extremely tough times.
Jake Rivers - relapsed ALL on May 24, 2005
William Olson
Kylie Barry
Gwen Mason
Gracie Mae Malloy

And as always, our other friends who are fighting the battle:
Andrew Vassil
Will Hennessy
Zach Hoechstetter - Port removed and officially off treatment Sept. 5, 2005!!
Merrill King
Jack Sanders
Brady Wolfe
Brady Scott
Holly Moore
Ian Rice
Sami Petrucciani -- A new friend we met through Merrill King.

And for the angels who watch over us:
Ethan Alain - April 28, 2001 - Aug. 3, 2005
Coulter Hampton - March 29, 2005
Haley Thompson - February 3, 2003 – December 19, 2004
Shelby Prescott - December 30,1998 - October 22, 2004
Carter Martin - November 20, 1996 - September 12, 2004
Alex Scott - August 1st, 2004

PAST NEWS:

Jeremy has a website! Hope to see you there!

Jeremy and Ben making news in the Atlanta Journal Constitution!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
With the help of the following organizations, we are devoted to finding a cure:
CureSearch
CureSearch Athletics
Cure Childhood Cancer
The Leukemia Lymphoma Society

With the help of the following organizations, we are devoted to finding peace in every moment:
Camp Sunshine
Lighthouse Family Retreat

Thursday, March 23, 2006 7:43 AM EST

Ben went to the clinic yesterday for a physical and a dose of vincristine. All counts were normal and the visit was a breeze. He starts another round of prednisone this week as well.

We ran into our buddy Jake while we were at the clinic. He's still got 12 more weeks of intensive chemo. He was actually waiting for hospital admission when we saw him. Next up for Jake is cranial radiation - 10 rounds. I can't imagine what his family is going through but to see them you wouldn't supsect a thing. Elle and Brent were their ever-gracious and hospitible selves. Jake even seemed as though he felt well. He and Ben played on the computers as the grown-ups had their talk. They get along so well, I'm sure they would have been pals even if we'd met Jake under "normal" circumstances. As you do for Ben, please continue prayers for this child. Jake and Ben share the same birth month and will both be turing 5 years old in May.

We're gearing up for Ben's Make A Wish trip. It's getting very exciting - at least for Chris and me. The boys have no clue what it's like to be on a cruise ship. I think it will just blow their minds!

Things are starting to brew on the CureSearch Athletics end. We have gotten an approved logo (designed by BeBe) and we'll be creating brochures and overhauling the website in the next couple of months. We have several new fundraisers for races even as far as Colorado. Jeremy's school, Queen of Angels, has even agreed to support our program in their annual family fun run this April.

The momentum the program has created recently proves to us that we made the right decision in organizing CSA and we're headed in the right direction. One of Ben's doctors, Hal Crosswell, is submitting a proposal to the Childrens Oncology Group this week in regards to a study of Biphenotypic Leukemia patients. Hopefully, some of the money we raise will go toward funding his research soon.

As always, thanks for your continued prayers for Ben's complete healing. Sign our guestbook if you have a minute. We love hearing from all of you!

Love,
Belinda, Chris, Jeremy and Benjamin
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
And keep the following children in your prayers as well. They are going through extremely tough times.
Jake Rivers - relapsed ALL on May 24, 2005
William Olson
Kylie Barry
Gwen Mason
Gracie Mae Malloy

And as always, our other friends who are fighting the battle:
Andrew Vassil
Will Hennessy
Zach Hoechstetter - Port removed and officially off treatment Sept. 5, 2005!!
Merrill King
Jack Sanders
Brady Wolfe
Brady Scott
Holly Moore
Ian Rice
Sami Petrucciani -- A new friend we met through Merrill King.

And for the angels who watch over us:
Ethan Alain - April 28, 2001 - Aug. 3, 2005
Coulter Hampton - March 29, 2005
Haley Thompson - February 3, 2003 – December 19, 2004
Shelby Prescott - December 30,1998 - October 22, 2004
Carter Martin - November 20, 1996 - September 12, 2004
Alex Scott - August 1st, 2004

PAST NEWS:

Jeremy has a website! Hope to see you there!

Jeremy and Ben making news in the Atlanta Journal Constitution!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
With the help of the following organizations, we are devoted to finding a cure:
CureSearch
CureSearch Athletics
Cure Childhood Cancer
The Leukemia Lymphoma Society

With the help of the following organizations, we are devoted to finding peace in every moment:
Camp Sunshine
Lighthouse Family Retreat

Sunday, March 5, 2006 7:36 AM CST

Quips from a child who lives in the world of cancer:

On learning about mortality:
"Why don't we all just start eating healthy food? That way we won't die."
"What does your soul look like?"
"Will Father Frank die too?"

On cancer:
"Why do I have cancer?"
"Will I die?"
"If I were a superhero, I would beat it up!"

On heaven:
"When I get to heaven, I'm going to wish for a house made of ginger bread and I'd eat it all day long!"
"Can the devil be in heaven?"
"When we go to heaven, will we see our baby that died?"

On rethinking his Make A Wish wish:
"I know, I could have wished that all the kids with cancer all got better! Darn!"

On just plain getting smarter:
"How did my port get in there?"
"How will they take it out?"

On "St. Baldrick's Day":
"I have an idea. Daddy can just shave the hair off his chest for the kids that don't have hair. That way he won't have to shave his head."

On suggesting that daddy shave his legs too:
"No! Yuck!"

I think I've been able to answer most of Ben's questions to his satisfaction. But as you can see, they are getting very challenging for me!

As always, thanks for your continued prayers for Ben's complete healing. Sign our guestbook if you have a minute. We love hearing from all of you!

And keep the following children in your prayers as well. They are going through extremely tough times.
Jake Rivers - relapsed ALL on May 24, 2005
William Olson
Kylie Barry
Gwen Mason
Gracie Mae Malloy

And as always, our other friends who are fighting the battle:
Andrew Vassil
Will Hennessy
Zach Hoechstetter - Port removed and officially off treatment Sept. 5, 2005!!
Merrill King
Jack Sanders
Brady Wolfe
Brady Scott
Holly Moore
Ian Rice
Sami Petrucciani -- A new friend we met through Merrill King.

And for the angels who watch over us:
Ethan Alain - April 28, 2001 - Aug. 3, 2005
Coulter Hampton - March 29, 2005
Haley Thompson - February 3, 2003 – December 19, 2004
Shelby Prescott - December 30,1998 - October 22, 2004
Carter Martin - November 20, 1996 - September 12, 2004
Alex Scott - August 1st, 2004

Love,
Belinda, Chris, Jeremy and Benjamin
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
PAST NEWS:

Jeremy has a website! Hope to see you there!

Jeremy and Ben making news in the Atlanta Journal Constitution!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
With the help of the following organizations, we are devoted to finding a cure:
CureSearch
CureSearch Athletics
Cure Childhood Cancer
The Leukemia Lymphoma Society

With the help of the following organizations, we are devoted to finding peace in every moment:
Camp Sunshine
Lighthouse Family Retreat

Thursday, February 23, 2006 5:30 PM EST

All went well this week at Ben's clinic visit. He got a physical and a dose of vincristine. His counts are all good. They’re maintaining his meds at 90% because I thought he may have gotten a touch of a stomach bug the past two days. No fever, no vomiting, no diarrhea, just a couple of stomach aches and frequent #2 potty breaks. But he seems to be doing much better with all of that. Next visit is March 22nd for more of the same.

As always, thanks for your continued prayers for Ben's complete healing. Sign our guestbook if you have a minute. We love hearing from all of you!

And keep the following children in your prayers as well. They are going through extremely tough times.
Jake Rivers - relapsed ALL on May 24, 2005
William Olson
Kylie Barry
Gwen Mason
Gracie Mae Malloy

And as always, our other friends who are fighting the battle:
Andrew Vassil
Will Hennessy
Zach Hoechstetter - Port removed and officially off treatment Sept. 5, 2005!!
Merrill King
Jack Sanders
Brady Wolfe
Brady Scott
Holly Moore
Ian Rice
Sami Petrucciani -- A new friend we met through Merrill King.

And for the angels who watch over us:
Ethan Alain - April 28, 2001 - Aug. 3, 2005
Coulter Hampton - March 29, 2005
Haley Thompson - February 3, 2003 – December 19, 2004
Shelby Prescott - December 30,1998 - October 22, 2004
Carter Martin - November 20, 1996 - September 12, 2004
Alex Scott - August 1st, 2004

Love,
Belinda, Chris, Jeremy and Benjamin
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
PAST NEWS:

Jeremy has a website! Hope to see you there!

Jeremy and Ben making news in the Atlanta Journal Constitution!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
With the help of the following organizations, we are devoted to finding a cure:
CureSearch
CureSearch Athletics
Cure Childhood Cancer
The Leukemia Lymphoma Society

With the help of the following organizations, we are devoted to finding peace in every moment:
Camp Sunshine
Lighthouse Family Retreat

Friday, February 17, 2006 8:16 AM EST

Hi everyone. Hope this entry fines you all doing well. We've all come down with one thing or another over the past 2 weeks but we're definitely on the mend.

2 weeks ago Chris fought of a bout of the stomach flu from Friday to Sunday. That Monday, I got the bug which lasted until Wednesday. Poor Jeremy got it next and was out of commission from Wednesday to Friday. We all kept our distance from Benjamin as though he was the sick one for fear of sharing our germs with him. We sent him off to school every day to just get him out of the house where I knew the virus was lingering. I disinfected the house from top to bottom each day hoping that I'd lessend the chances of Ben contracting the stomach flu. Fortunately it worked! Benjamin only came down with a slight cold. But by the end of the week he thought no body liked him because he'd been isolated for so long! Luckily, at the end of the week we were all able to attend the Big Apple Circus with Camp Sunshine.

The boys loved the circus. Thank you to Camp Sunshine for arranging a special performance for such special kids. To see a mass of cancer kids under the big top is quite overwhelming, but to watch their expressions and hear their uproarious laughter as the clowns did their magic was comforting and a sign that this day was a really good day for all of them.

Last Tuesday Ben had his kindergarten testing day at Queen of Angels. They take each applicant for the following school year and evaluate where they currently stand academically. It's really no big deal and I thought Ben realized that. As we drove to the school he asked me to quiz him on his alphabet, number, shapes, etc. So I thought he was calm and looking forward to it. But as soon as we arrived and saw the lobby full of kids he broke down sobbing and scared. He became nervous and didn't want to go through with it. We took a few minutes to relax and talk about how he was feeling. He asked, "If I don't do this, can I still go to kindergarten?" Unfortunately this testing was part of the process. He had to do it. One of the faculty members came to collect all the kids for the testing and Ben wouldn't budge. After a little coaxing and a promise that he could come back and try another day if he didn't think he could do it, he convinced himself to at least walk down to the testing room and check it out. From the reports I got, he continued to cry for the first 5 minutes but soon found his comfort zone at the coloring table and was able to complete the rest of the test. Phew!

We go back to the clinic on the 22nd for a physical and vincristine. As always, thanks for your continued prayers for Ben's complete healing. Sign our guestbook if you have a minute. We love hearing from all of you!

And keep the following children in your prayers as well. They are going through extremely tough times.
Jake Rivers - relapsed ALL on May 24, 2005
William Olson
Kylie Barry
Gwen Mason
Gracie Mae Malloy

And as always, our other friends who are fighting the battle:
Andrew Vassil
Will Hennessy
Zach Hoechstetter - Port removed and officially off treatment Sept. 5, 2005!!
Merrill King
Jack Sanders
Brady Wolfe
Brady Scott
Holly Moore
Ian Rice
Sami Petrucciani -- A new friend we met through Merrill King.

And for the angels who watch over us:
Ethan Alain - April 28, 2001 - Aug. 3, 2005
Coulter Hampton - March 29, 2005
Haley Thompson - February 3, 2003 – December 19, 2004
Shelby Prescott - December 30,1998 - October 22, 2004
Carter Martin - November 20, 1996 - September 12, 2004
Alex Scott - August 1st, 2004

Love,
Belinda, Chris, Jeremy and Benjamin
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
PAST NEWS:

Jeremy has a website! Hope to see you there!

Jeremy and Ben making news in the Atlanta Journal Constitution!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
With the help of the following organizations, we are devoted to finding a cure:
CureSearch
CureSearch Athletics
Cure Childhood Cancer
The Leukemia Lymphoma Society

With the help of the following organizations, we are devoted to finding peace in every moment:
Camp Sunshine
Lighthouse Family Retreat

Thursday, January 26, 2006 4:10 PM EST

I found out this morning that Ben's CNS is clear. We're going strong!


Wednesday, January 25, 2006 9:48 AM EST

Ben's clinic visit went well last Monday. His counts were good enough to increase the chemo he recevies at home to 90 percent of the full doseage. The docs are being cautious about ramping up his meds too quickly. They don't want his counts to fall too drastically. So, probably for the next couple of weeks Ben will be at 90 percent.

His LP procedure went smoothly. We should get results of the CNS in a day or so. It's so funny how the LP days are his most favorite of the clinic days. He was lying on the bed as we waited for the docs and nurses to prepare for the procedure. He was watching The Lion King movie (at his request) and started mumbling something under his breath. I asked him if anything was wrong and he said, "I'm ready to go to sleep. I want the sleepy medicine now." I didn't realize it was such a treat! And of course, the blueberry muffin and Funions were on hand. As many times as we've done this, the menu stays the same.

When he was done, he got a toy at the clinic from their treasure chest and then we stopped at Target to pick up another toy from mommy and daddy.

He chose not to go to school after the clinic visit. So, Ben and I hung out at the house until it was time to pick up Jeremy from school.

A pretty good day.

As always, thanks for your continued prayers for Ben's complete healing. Sign our guestbook if you have a minute. We love hearing from all of you!

And keep the following children in your prayers as well. They are going through extremely tough times.
Jake Rivers - relapsed ALL on May 24, 2005
William Olson
Kylie Barry
Gwen Mason
Gracie Mae Malloy

And as always, our other friends who are fighting the battle:
Andrew Vassil
Will Hennessy
Zach Hoechstetter - Port removed and officially off treatment Sept. 5, 2005!!
Merrill King
Jack Sanders
Brady Wolfe
Brady Scott
Holly Moore
Ian Rice
Sami Petrucciani -- A new friend we met through Merrill King.

And for the angels who watch over us:
Ethan Alain - April 28, 2001 - Aug. 3, 2005
Coulter Hampton - March 29, 2005
Haley Thompson - February 3, 2003 – December 19, 2004
Shelby Prescott - December 30,1998 - October 22, 2004
Carter Martin - November 20, 1996 - September 12, 2004
Alex Scott - August 1st, 2004

Love,
Belinda, Chris, Jeremy and Benjamin
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
PAST NEWS:

Jeremy has a website! Hope to see you there!

Jeremy and Ben making news in the Atlanta Journal Constitution!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
With the help of the following organizations, we are devoted to finding a cure:
CureSearch
CureSearch Athletics
Cure Childhood Cancer
The Leukemia Lymphoma Society

With the help of the following organizations, we are devoted to finding peace in every moment:
Camp Sunshine
Lighthouse Family Retreat

Wednesday, January 25, 2006 9:48 AM EST

Wednesday, January 25, 2006 9:48 AM EST

Ben's clinic visit went well last Monday. His counts were good enough to increase the chemo he recevies at home to 90 percent of the full doseage. The docs are being cautious about ramping up his meds too quickly. They don't want his counts to fall too drastically. So, probably for the next couple of weeks Ben will be at 90 percent.

His LP procedure went smoothly. We should get results of the CNS in a day or so. It's so funny how the LP days are his most favorite of the clinic days. He was lying on the bed as we waited for the docs and nurses to prepare for the procedure. He was watching The Lion King movie (at his request) and started mumbling something under his breath. I asked him if anything was wrong and he said, "I'm ready to go to sleep. I want the sleepy medicine now." I didn't realize it was such a treat! And of course, the blueberry muffin and Funions were on hand. As many times as we've done this, the menu stays the same.

When he was done, he got a toy at the clinic from their treasure chest and then we stopped at Target to pick up another toy from mommy and daddy.

He chose not to go to school after the clinic visit. So, Ben and I hung out at the house until it was time to pick up Jeremy from school.

A pretty good day.

As always, thanks for your continued prayers for Ben's complete healing. Sign our guestbook if you have a minute. We love hearing from all of you!

And keep the following children in your prayers as well. They are going through extremely tough times.
Jake Rivers - relapsed ALL on May 24, 2005
William Olson
Kylie Barry
Gwen Mason
Gracie Mae Malloy

And as always, our other friends who are fighting the battle:
Andrew Vassil
Will Hennessy
Zach Hoechstetter - Port removed and officially off treatment Sept. 5, 2005!!
Merrill King
Jack Sanders
Brady Wolfe
Brady Scott
Holly Moore
Ian Rice
Sami Petrucciani -- A new friend we met through Merrill King.

And for the angels who watch over us:
Ethan Alain - April 28, 2001 - Aug. 3, 2005
Coulter Hampton - March 29, 2005
Haley Thompson - February 3, 2003 – December 19, 2004
Shelby Prescott - December 30,1998 - October 22, 2004
Carter Martin - November 20, 1996 - September 12, 2004
Alex Scott - August 1st, 2004

Love,
Belinda, Chris, Jeremy and Benjamin
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
PAST NEWS:

Jeremy has a website! Hope to see you there!

Jeremy and Ben making news in the Atlanta Journal Constitution!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
With the help of the following organizations, we are devoted to finding a cure:
CureSearch
CureSearch Athletics
Cure Childhood Cancer
The Leukemia Lymphoma Society

With the help of the following organizations, we are devoted to finding peace in every moment:
Camp Sunshine
Lighthouse Family Retreat

Sunday, January 22, 2006 7:51 PM CST

Ben's off to the clinic tomorrow at 8:30am. He's scheduled to receive a lumbar puncture, interthecal methotrexate, vincristine and will begin another pulse of prednisone. Please pray that things continue to go well for Benjamin. LPs are always scary but if the news of the result is good then it's really good. Please pray that his body is holding strong.

It was Ben's first full week back to school and he did very well. He didn't get as nervous as I thought he would. Maybe he was just happy to get rid of me for a few hours! I know he missed his school pals too.

Our big news is that Ben received his wish from the Make A Wish Foundation. In April we will board a Disney Bahamas cruise for a 5 day/4night adventure! Ben and Jeremy are so excited about the trip and Chris and I aren't too upset about it either! We've received our itinerary and details about shore excursions. It should be a fantastic time!

As always, thanks for your continued prayers for Ben's complete healing. Sign our guestbook if you have a minute. We love hearing from all of you!

And keep the following children in your prayers as well. They are going through extremely tough times.
Jake Rivers - relapsed ALL on May 24, 2005
William Olson
Kylie Barry
Gwen Mason
Gracie Mae Malloy

And as always, our other friends who are fighting the battle:
Andrew Vassil
Will Hennessy
Zach Hoechstetter - Port removed and officially off treatment Sept. 5, 2005!!
Merrill King
Jack Sanders
Brady Wolfe
Brady Scott
Holly Moore
Ian Rice
Sami Petrucciani -- A new friend we met through Merrill King.

And for the angels who watch over us:
Ethan Alain - April 28, 2001 - Aug. 3, 2005
Coulter Hampton - March 29, 2005
Haley Thompson - February 3, 2003 – December 19, 2004
Shelby Prescott - December 30,1998 - October 22, 2004
Carter Martin - November 20, 1996 - September 12, 2004
Alex Scott - August 1st, 2004

Love,
Belinda, Chris, Jeremy and Benjamin
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
PAST NEWS:

Jeremy has a website! Hope to see you there!

Jeremy and Ben making news in the Atlanta Journal Constitution!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
With the help of the following organizations, we are devoted to finding a cure:
CureSearch
CureSearch Athletics
Cure Childhood Cancer
The Leukemia Lymphoma Society

With the help of the following organizations, we are devoted to finding peace in every moment:
Camp Sunshine
Lighthouse Family Retreat

Tuesday, January 10, 2006 10:13 AM EST

In my haste to update a couple of weeks ago, I failed to mention that we were going to Disney World!

Well, we're back and we had and awesome time. We usually go the first week in February but this year was different. Chris signed up for the Disney Half Marathon with our friends Christopher and Cynthia who both ran on behalf of Ben and CureSearch Athletics. Everyone was successful in completing the run even with injuries! Big, huge thank yous to Christopher and Cynthia for helping get our CSA program off the ground and to a great start! Together they raised nearly $1500! That in itself is an incredible feat!

The boys and I are starting to get the running bug as well. Jeremy and I ran in the Family 5K Fun Run and Benjamin crossed the finish line with a huge smile on his face in his 200 yard dash race! I think we've found a new family sport.

The week started out last Wednesday as we pulled up to the Nickelodeon Hotel. The boys have been itching to go there for almost a year now. We kept our lodgings a secret until we drove up to the door. What a time they had! Bunk beds in their own room with a tv and playstation beckoning their names. Just outside our room was the pool and fantastic waterslide. Ben has become quite the daredevil and went down every slide - even the ones in which he barely made the height requirement! After swimming, we showered and had pizza at the "mall" on the hotel grounds. There the boys played bingo, nick trivia and ended the evening in the arcade. Way too much fun. Later, Jeremy and I attended a "Slime Time Live" show. It was so much better in person than watching it on tv.

The next morning we headed out to MGM Studios which is swiftly becoming one of our favorite parks. Ben made the height requirment for the Star Tours ride this year. (Last year was heartbreaking. Without his hair and the delay in growth from the chemo he was shy about 2 inches.) Needless to say, we rode that ride several times!

Friday was a big treat for the boys. We had arranged to meet their friends Emma (her dad is Christopher who ran for CSA) and Jeffery and Nikolas who were at Disney for their regular annual visit. The boys were ecstatic that they would be spending the day with their favorite friends at the Magic Kingdom - the greatest place on earth! Just inside the gate, we ran in to Andrew Kehoe and his family. Andrew was Ben's best friend in preschool when Ben was diagnosed. We haven't seen much of them lately but they soon remembered how they once were best pals. Andrew's dad ran the full marathon for the Leukemia Lymphoma Society - its an annual thing for him. So, with our group in tow, we hit as many rides as we could. Jeremy and Ben are becoming huge fans of the rollercoaster rides. Thunder Mountain Railroad became their favorite ride this year. It was a fantastic day - one of those which we'll always remember.

On Saturday we ran our races. Chris' started at 6am so the boys and I had a leisurely breakfast at the hotel and met Chris after his run. It was such a special experience for me running the 5K with Jeremy. We played a Star Wars guessing game to pass the time but once we entered Epcot the run went by in a flash. We ran around the world and were greeted by representatives of each country as we past through. As we crossed the finish line, Jeremy offered me his hand for a congratulatory high five. I loved it.

Ben's race followed our run. He and I waited with the other 3 - 4 year olds in a holding area. They ran each age group and gender seperately so we had some time to kill. It ended up that we had quite some time to spare and the kids and parents became very frustrated. I was one of them. Ben was cool as a cucumber knowing that he had to run the race to receive a medal. After about 45 mins in the holding area Ben and I walked up to the staging area where the starting line was. My idea was just to wait until his group started to line up and I would just sneak him in behind them. This way we wouldn't have to be confined to the holding pen. As we appoached the starting line I noticed that the group that was just about to race was the 5-6 year old boys. I looked around. No one was watching us. Ben looked as big as some of the boys so I told Ben to get ready. We'd be running in just a few seconds. I quickly called Chris on his cell and told him to look out for us in the very next race. Ben took his ready stance and we were off! I ran along side him for the entire race. He was grinning from ear to ear as we rounded the corner. He nimbly avoided collision with several other boys ahead of him and he was excited to see Jeremy and Chris rooting him on. Crossing the finish line gave me a glimpse into Ben's future. He WILL beat this thing.

As always, thanks for your continued prayers for Ben's complete healing. Sign our guestbook if you have a minute. We love hearing from all of you!

And keep the following children in your prayers as well. They are going through extremely tough times.
Jake Rivers - relapsed ALL on May 24, 2005
William Olson
Kylie Barry
Gwen Mason
Gracie Mae Malloy

And as always, our other friends who are fighting the battle:
Andrew Vassil
Will Hennessy
Zach Hoechstetter - Port removed and officially off treatment Sept. 5, 2005!!
Merrill King
Jack Sanders
Brady Wolfe
Brady Scott
Holly Moore
Ian Rice
Sami Petrucciani -- A new friend we met through Merrill King.

And for the angels who watch over us:
Ethan Alain - April 28, 2001 - Aug. 3, 2005
Coulter Hampton - March 29, 2005
Haley Thompson - February 3, 2003 – December 19, 2004
Shelby Prescott - December 30,1998 - October 22, 2004
Carter Martin - November 20, 1996 - September 12, 2004
Alex Scott - August 1st, 2004

Love,
Belinda, Chris, Jeremy and Benjamin
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
PAST NEWS:

Jeremy has a website! Hope to see you there!

Jeremy and Ben making news in the Atlanta Journal Constitution!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
With the help of the following organizations, we are devoted to finding a cure:
CureSearch
CureSearch Athletics
Cure Childhood Cancer
The Leukemia Lymphoma Society

With the help of the following organizations, we are devoted to finding peace in every moment:
Camp Sunshine
Lighthouse Family Retreat

Tuesday, January 3, 2006 1:09 PM CST

We got everything we wanted for Christmas! Both boys are doing well and Chris and I couldn't be happier.

Ben actually climbed up on Santa's lap this year without hesitation and announced that he wanted a blue power ranger with action voice. For the next two days, I searched high and low and finally found the exact toy he wanted and it was even the very last blue ranger! I put batteries in it and tested the action voice. We put it out Christmas eve and went to bed. When Christmas morning arrived I couldn't wait to see is reaction. He picked up the power ranger, shrugged his shoulders and told us that Santa had brought the wrong one, "but that's okay," he said, "I still like it anyway." How could this be? I know I got exactly what he asked for - blue, power ranger with action voice. How could I mess that up? Upon emptying his stocking he cried, "Here it is! Santa put it in my stocking instead!" "But, Ben, that's a small red power ranger that doesn't say anything." I insisted. "Yep," he said, "just what I wanted." Needless to say, he hasn't picked up that blue ranger since Christmas day.

We had another great celebration this year with family and friends. Everyone went home with armloads of presents and a belly full of our holiday bounty. The only thing missing was snow, but we don't hold our breath for the white stuff around these parts!

Ben went to the clinic today for a CBC. All counts were good and steadily rising. He will continue his meds at 75 percent until the 23rd - his next clinic appointment. We'll find out later today if he needs to get the IVIG as well. But with his ANC well in the 2000 range he most likely won't need it soon.

As always, thanks for your continued prayers for Ben's complete healing. Sign our guestbook if you have a minute. We love hearing from all of you!

And keep the following children in your prayers as well. They are going through extremely tough times.
Jake Rivers - relapsed ALL on May 24, 2005
William Olson
Kylie Barry
Gwen Mason
Gracie Mae Malloy

And as always, our other friends who are fighting the battle:
Andrew Vassil
Will Hennessy
Zach Hoechstetter - Port removed and officially off treatment Sept. 5, 2005!!
Merrill King
Jack Sanders
Brady Wolfe
Brady Scott
Holly Moore
Ian Rice
Sami Petrucciani -- A new friend we met through Merrill King.

And for the angels who watch over us:
Ethan Alain - April 28, 2001 - Aug. 3, 2005
Coulter Hampton - March 29, 2005
Haley Thompson - February 3, 2003 – December 19, 2004
Shelby Prescott - December 30,1998 - October 22, 2004
Carter Martin - November 20, 1996 - September 12, 2004
Alex Scott - August 1st, 2004

Love,
Belinda, Chris, Jeremy and Benjamin
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
PAST NEWS:

Jeremy has a website! Hope to see you there!

Jeremy and Ben making news in the Atlanta Journal Constitution!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
With the help of the following organizations, we are devoted to finding a cure:
CureSearch
CureSearch Athletics
Cure Childhood Cancer
The Leukemia Lymphoma Society

With the help of the following organizations, we are devoted to finding peace in every moment:
Camp Sunshine
Lighthouse Family Retreat