History

Sunday, March 30, 2008 9:23 AM CDT

ANC is 320 and ...................WE'RE GOING HOME!

Thanks for praying!

Love,
Belinda, Chris, Jeremy and Benjamin

P.S. You may have noticed above that we're running in a 5K in May and trying to raise money for pediatric cancer research. Please consider a donation or joining our team. Your generousity will grately impact the lives of children with cancer. Thank you.

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

Robb Taylor
Sean Dever
Jake Rivers
Annie Coyle
William Olson
Kylie Barry
Gwen Mason
Gracie Mae Malloy
Andrew Vassil
Will Hennessy
Zach Hoechstetter
Merrill King
Brady Wolfe
Brady Scott
Holly Moore
Ian Rice
Sami Petrucciani

And for the angels who watch over us:

Jack Sanders - January 8, 2008
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, March 29, 2008 12:19 AM CDT

Things are looking up!

No fever since yesterday early morning and ANC is up to 200 from 70. Doc said that if Ben continues on this path through the night, we'll be headed home tomorrow!

By the way, Mass was said for Ben yesterday at Queen of Angels. See how that works?! :)

Thanks for praying!

Love,
Belinda, Chris, Jeremy and Benjamin

P.S. You may have noticed above that we're running in a 5K in May and trying to raise money for pediatric cancer research. Please consider a donation or joining our team. Your generousity will grately impact the lives of children with cancer. Thank you.

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

Robb Taylor
Sean Dever
Jake Rivers
Annie Coyle
William Olson
Kylie Barry
Gwen Mason
Gracie Mae Malloy
Andrew Vassil
Will Hennessy
Zach Hoechstetter
Merrill King
Brady Wolfe
Brady Scott
Holly Moore
Ian Rice
Sami Petrucciani

And for the angels who watch over us:

Jack Sanders - January 8, 2008
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, March 28, 2008 1:33 PM EST

*************UPDATE********************

Just spoke to the doc. No fungus to be seen on the CT scan but it doesn't mean there is not fungus. Just means there are not enough white blood cells to detect one. This always confuses me. Why do the CT scan if we already know his white blood cell count is low? Why not just wait until the counts come up. Because supposedly they will redo the scan when the counts come up. Just seems like alot of undue stress on Ben.

The radiologist also detected fatty deposits on his liver and slight enlargement. Dr. Brown (onc) said that it is typical of a chemotherapy patient. Said he would be more concerned if Ben's liver enzymes where staying high but have showed signs of normalizing over the past couple of days. Scan also detected slightly swollen appendix. Dr. Brown not giving that much consideration either. With thrush in his mouth and the yeast in his bottom, they are highly suspicious of a fungal infection somewhere. They're still comfortable with the VFend which is the mildest of antifungals.

Still no end in sight. Counts were exactly the same as yesterday. So, when those show an upward trend and fevers are gone for 24 hrs. docs will start thinking about discharge.
***************************************

Friday, March 28, 2008 10:47 AM EST

Hi all,
We're still here! Ben had a CT scan yesterday and I've yet to hear any news from the docs regarding the results. Hopefully that only means that the findings were insignificant enough to keep us hanging here for another night.

Ben is currently on a precautional antifungal called V-Fend. He's also on Culturell for yeast found in his stool. Overall he's been feeling really good although he still has fevers now and then. His last one was at 2am this morning.

Yesterday was a pretty emotional day because of the CT scan. The nurses did a great job on Wednesday keeping the possibility of a scan a secret from Ben. Then a rounding doc who doesn't know Ben very well came into the room and blew the top of the secret by telling Ben what they had planned for the following day. Ben looked me straight in the eye and said, "I'm going to need an IV for that." I didn't even remember from scans past that they require a peripheral IV! From that moment on, he was a basket case. He didn't get out of bed all day and just felt miserable.

Yesterday was traumatic. He just can't contain himself when it comes to IVs. I'm sure he remembers the chaos about 6 months ago when it took hours and 4 or 5 sticks to locate a good vein for an IV. I can't blame him for his fear. They gave him a dose of Ativan to calm his nerves and they placed the IV in one try. Thank goodness.

We got a break while waiting for our scan appointment. During that time, Ben opened a package he'd been waiting for. He bought himself an Indiana Jones bullwhip. He's been readying himself for the new "Indiana Jones and the Kingdom of the Crystal Skull" by watching all the old trilogy and collecting all of the new Lego sets. He’s Indiana Jones all day, every day!

The scan was going to be the easy part. He’s done it several times before. Just lay there and get pulled through a giant donut. Easy. Well, this time, the contrast they pushed through the IV hurt. The guess is that the IV was not put in a great place which made the contrast burn. The only other option was to get another IV. So, Ben braved the discomfort and held still as a statue for the scan.

The rest of the day was spent practicing his whip until the Ativan started to wear off. Around dinner time he became so agitated and somewhat disoriented. He was crying and extremely upset but he didn’t know why. He would settle down for a few minutes and start all over again with nothing obvious to point out as the source of his irritability. After about 20 minutes, he was fine and picked up his whip again. He came out into the hall where our friends the Robbs had brought dinner on behalf of Cure Childhood Cancer for the whole AFLAC floor. He socialized a bit and showed off his new talent. He was in a great mood again. Right before he went to bed he had one last pang of anxiety. He’s really homesick and told me that he felt like he was missing something. He didn’t know what it was. He was just missing something. Then he told me that he felt like a puppy without a home. We had a talk about “home is where the heart is” and the love he feels when his family and friends come to visit him at the hospital is the same love he feels in the house. It seemed to comfort him and he fell asleep.

So, here we are, 10:30am and still waiting for scan results. I’ll certainly post them here as soon as I know something. Thanks again for following us through this adventure!

Thanks for praying!

Love,
Belinda, Chris, Jeremy and Benjamin

P.S. You may have noticed above that we're running in a 5K in May and trying to raise money for pediatric cancer research. Please consider a donation or joining our team. Your generousity will grately impact the lives of children with cancer. Thank you.

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

Robb Taylor
Sean Dever
Jake Rivers
Annie Coyle
William Olson
Kylie Barry
Gwen Mason
Gracie Mae Malloy
Andrew Vassil
Will Hennessy
Zach Hoechstetter
Merrill King
Brady Wolfe
Brady Scott
Holly Moore
Ian Rice
Sami Petrucciani

And for the angels who watch over us:

Jack Sanders - January 8, 2008
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, March 26, 2008 9:38 AM EST

Good morning everyone!

Only more of the same to report. Ben had fevers on and off yesterday and didn’t feel well all day. We did learn from the docs that they don’t think his fevers are coming from the ecoli anymore. They feel we won that battle on Sunday. Ben’s pediatrician has a suspicion that the popped abscess may be contributing. Although, with a low ANC and a white blood cell count that won’t budge, it could be anything.

Ben got a visit from Ms. Eikey who use to teach him and Jeremy karate back in the day. She’s always good for a laugh and got Ben to perk up a bit. Then Matthew came down to spend some time with his pal and his mom, Beth, came so that I could get a break and see one of Jeremy’s baseball games. (They won, by the way!) Before I left, I ran into another one of Ben’s pals, Tommy, and his mom who came bearing all kinds of gifts. I’m sure Ben was excited to see them! I certainly hope Ben realizes just how lucky he is to have so many thoughtful and caring friends who like spending time with him and pray for him on a regular basis. I surely do.

Thanks, Maura and Beth for organizing my baseball retreat, holding down the fort at the hospital and the wonderful dinner. Thanks especially for knowing me well enough to recognize what I need when I don’t even know myself.

Ben slept pretty well last night except to get up once for nausea and an unexpected late night conversation. As he lied there trying to fall asleep, I could tell he had something on his mind. I was afraid he was starting to get depressed over his extended stay at the hospital and the thought of what he might be missing out on at school and at home. I asked him what he was thinking about and he just shrugged his shoulders and closed his eyes. A few seconds later in the tiniest voice I ever heard he said, “China”.
“You want to go to China?”
“Yeah, “ he replied. “Is it a state or a country?”
“A country,” I said.
”Man! Do you have to get a shot to go there?”
“I don’t think so. Why do you want to go to China?” I was having deeper thoughts in my mind that maybe he wants to escape and get as far away from this situation as possible. It’s definitely something that I think I would feel. “Are you sad?” I asked.
“No, I want to know what real Chinese food tastes like.”

Thank goodness! His appetite must be coming back!

His ANC is 50 today but hemoglobin is 7. He’ll be getting blood and continue his antibiotics. Because of the fevers, they changed his Gentimicin to Vancomycin and will continue the Meropenem. And he hasn’t had a fever since his 2am Chinese food craving. Excited to see what today has in store!

Thanks for praying!

Love,
Belinda, Chris, Jeremy and Benjamin

P.S. You may have noticed above that we're running in a 5K in May and trying to raise money for pediatric cancer research. Please consider a donation or joining our team. Your generousity will grately impact the lives of children with cancer. Thank you.

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

Robb Taylor
Sean Dever
Jake Rivers
Annie Coyle
William Olson
Kylie Barry
Gwen Mason
Gracie Mae Malloy
Andrew Vassil
Will Hennessy
Zach Hoechstetter
Merrill King
Brady Wolfe
Brady Scott
Holly Moore
Ian Rice
Sami Petrucciani

And for the angels who watch over us:

Jack Sanders - January 8, 2008
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, March 25, 2008 9:45 AM EST

Ben had another good day yesterday. He had an all day visit from his friends Reagan and Catherine. They played webkins, took a trip down to the library, had a Toss Across tournament, playstation (of course) and whatever they could find to do. Ben was tuckered out at the end of the day!

His molar tooth pain has subsided. It seems he had an abscess. It popped and Ben was not happy mainly because of the stuff coming out of it. But the pain is gone and hopefully that tooth will just come on down!

I went home with Jeremy last night and got a message from Chris that Ben spiked a fever around 11:30pm. So, that means his stay at the hospital has been extended....again. Yesterday they changed his Rocephan back to Meropenem because of some irritation in his bottom. All looks fine, but the Meropenem has broader coverage and should get whatever is causing the discomfort.

Fr. Frank also came to visit yesterday and gave Ben a blessing. It's always somewhat of a relief to see him. I guess it's because he has been with us from day one.

Anway, Ben's haning in and considering a day at the hospital school. We'll see....

Love,
Belinda, Chris, Jeremy and Benjamin

P.S. You may have noticed above that we're running in a 5K in May and trying to raise money for pediatric cancer research. Please consider a donation or joining our team. Your generousity will grately impact the lives of children with cancer. Thank you.

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

Robb Taylor
Sean Dever
Jake Rivers
Annie Coyle
William Olson
Kylie Barry
Gwen Mason
Gracie Mae Malloy
Andrew Vassil
Will Hennessy
Zach Hoechstetter
Merrill King
Brady Wolfe
Brady Scott
Holly Moore
Ian Rice
Sami Petrucciani

And for the angels who watch over us:

Jack Sanders - January 8, 2008
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, March 23, 2008 8:22 PM EST

I wish I had my camera today! Ben had a great Easter!

It all started off with a basket filled with all kinds of his favorite things from the Easter Bunny. I knew he'd find Ben at the hospital! Then Ben's buddy Ryan came back to visit and brought his 3 brothers, sister, mom and dad too! A little playstation, tabletop basketball, webkins, you name it. Whatever 7 kids can think of to do in a hospital room, they did it! Ben was all smiles.

Then Uncle Toti, BeBe and Will showed up with an Easter feast - ham, broccoli, carrots, cresent rolls, mashed potatoes, cupcakes and the hugest coconut cake you've ever seen! Ben gobbled up as much as he could but made sure to save room for the candy the Easter bunny left. We made sure we were all good and stuffed before we started in on seconds! Afterward, we locked the boys in the bathroom so that we could prepare for an Easter egg hunt in the room. Ben made it extra hard on Jeremy by actually using the facilities while they were in there! When the coast was clear they combed through the room like treasure hunters. They each collected $5 from the money filled eggs and fell for the rotten eggs filled with leftover carrots and broccoli!

After lunch, The McCoy family paid us a visit. Ben took them down to the koi pond to try out a practice baseball bat the bunny had left. The boys took turns swinging away at plastice eggs and happily smashed them into little tiny pieces! We got back to the room and they made paper airplanes then continued the baseball. Mrs. Ascari showed up too bearing fresh baked cookies and other surprises to keep Ben busy at the hospital.

What a day! Ben was thrilled that his friends and family came down to spend Easter with us. It was surely a special day for him.

Now, for the medical stuff...Ben's ANC came up from 10 yesterday to 100 today. A great big leap that has the docs smiling. He got another bag of plateletts today because, of all things, Ben is getting his molars in and the front tooth he lost last month. The teething is causing alot of pain and the low platelettes caused bruising on his gums. Talk about uncomfortable! Fortunately, Tylenol relieves the pain for a while.

He's asleep now. Obviously tired from an exciting day. Hope your day was as great as ours! Happy Easter to all of you!

Love,
Belinda, Chris, Jeremy and Benjamin

P.S. You may have noticed above that we're running in a 5K in May and trying to raise money for pediatric cancer research. Please consider a donation or joining our team. Your generousity will grately impact the lives of children with cancer. Thank you.

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

Robb Taylor
Sean Dever
Jake Rivers
Annie Coyle
William Olson
Kylie Barry
Gwen Mason
Gracie Mae Malloy
Andrew Vassil
Will Hennessy
Zach Hoechstetter
Merrill King
Brady Wolfe
Brady Scott
Holly Moore
Ian Rice
Sami Petrucciani

And for the angels who watch over us:

Jack Sanders - January 8, 2008
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, March 22, 2008 1:53 AM EST

After some well vocalized drama from Ben yesterday, we were under the impression that we'd be going home today.

Nurs Sarah came in with the good news that as long as his counts kept coming up, we would go home on Rocephan. Ben would finish the Gentimiacin on Saturday and we'd have about 7 days of Rocephan left to administer at home. Ben was not happy.

First of all, he thought he was going to be able to play in his first baseball game on Saturday but knew all too well that if he was going home on an IV antibiotic, that meant his port would stay accessed which is not suitable for sports. We assured him that timing wise, he was not going to be able to play in his game regardless.

Then came the discussion about the dressing change of the line. Ben knows that every 7 days his port has to be re-accessed and the dressing changed. This has always been disturbing for Ben. We convinced him to change it on Friday rather than on Tuesday when it was due so as to save us a trip to the clinic just for a dressing change. He was distraught anyway. We were told earlier that the hospital and clinic would not be able to use his favorite dressing patch (less sticky) but would have to return to Tegaderm or something similar. All of this is bad news to Ben.

Through his tears he told me that I just didn't understand what he was going through. And he was right. He told me that last summeer when we were talking about the end of his treatment and how we'd have a party when he got his port out was something he was really looking forward to. He said, "When I had all my hair, I thought I was all done with cancer. Now look! I'm stuck here again!" I didn't know what to say. Sometimes when he shows his strength and seems to take all this in stride, I forget that he's a six year old little boy climbing this huge incredible mountain with no sure footing ahead.

So, when that was all said and done, we were looking forward to being at home for Easter. Or so we'd hoped. We just heard from the nurse that Ben's counts fell. His ANC has been on the rise since we got here reaching 60 yesterday but fell to 10 overnight. So, until they're sure his counts are on the rise, he'll be hanging out in room 198. I just hope it's very soon as he is due back to the hospital on April 1 for more chemo.

On the bright side, Ben has had a lot of visitors this time around. Yesterday his buddies Jack and Ryan came down for some playstation and today David and Peter joined in on some Easter festivities at the hospital. Ben's making the best of this situation as he always does.

Peace to all of you!

Belinda, Chris, Jeremy and Benjamin

P.S. You may have noticed above that we're running in a 5K in May and trying to raise money for pediatric cancer research. Please consider a donation or joining our team. Your generousity will grately impact the lives of children with cancer. Thank you.

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

Robb Taylor
Sean Dever
Jake Rivers
Annie Coyle
William Olson
Kylie Barry
Gwen Mason
Gracie Mae Malloy
Andrew Vassil
Will Hennessy
Zach Hoechstetter
Merrill King
Brady Wolfe
Brady Scott
Holly Moore
Ian Rice
Sami Petrucciani

And for the angels who watch over us:

Jack Sanders - January 8, 2008
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, March 20, 2008 5:21 PM CDT

Hello everyone!

Here it is.........Ben has ecoli. It's not due to anything he injested, it's just the natural ecoli that you and I have it's just that the chemo has supressed his immune system so that his body is unable to fight it alone. Ben's antibiotics have been changed to more specific ones that combat ecoli, Rocephan and Gentimiacin.

Dr. Lew said that as long as his counts show evidence of a comeback, there is a chance that Ben will be discharged on Saturday but we'll have to adminster the balance of the Rocephan at home. That means that they'll keep his port accessed which is always a little scarey, but we'd much rather be home than here and celebrating Easter with family and friends. But through all of this, Ben feels like the champ that he is. He and Jeremy played with their friend, Ben M. for a couple of hours. He's been all around the hospital and giving his nurse a hard time as usual. All of this after having a rough night with nausea. Ben always finds a way to rally!

Thanks to all of you for your concern and thanks to all of you who have helped keep us on track with Jeremy and the rest of our lives. Can't do this without any of you!

Peace to all of you!

Belinda, Chris, Jeremy and Benjamin

P.S. You may have noticed above that we're running in a 5K in May and trying to raise money for pediatric cancer research. Please consider a donation or joining our team. Your generousity will grately impact the lives of children with cancer. Thank you.

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

Robb Taylor
Sean Dever
Jake Rivers
Annie Coyle
William Olson
Kylie Barry
Gwen Mason
Gracie Mae Malloy
Andrew Vassil
Will Hennessy
Zach Hoechstetter
Merrill King
Brady Wolfe
Brady Scott
Holly Moore
Ian Rice
Sami Petrucciani

And for the angels who watch over us:

Jack Sanders - January 8, 2008
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, March 19, 2008 10:41 AM EST

Ben went to the clinic yesterday for a blood transfusion. After a long day he developed a fever with chills and nausea. He got a dose of Rocephan the docs thought may have been causing the trouble and treated him with preventative measures to avoid shock. Ben felt miserable.

This morning his blood cultures came back showing gram negative rods (some kind of bacteria). They then decided to put him on Meropenem and Amikacin. They need to have 3 clean blood samples before they'll decide to discharge him. Fortunately, he has been fever free since about midnight. And he feels well enough that he has gone to the school here at the hospital and has been there for over an hour!

Once again, thanks for all your prayers! Please add an extra one that Ben is able to be home for Easter.

Peace to all of you!

Belinda, Chris, Jeremy and Benjamin

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

Robb Taylor
Sean Dever
Jake Rivers
Annie Coyle
William Olson
Kylie Barry
Gwen Mason
Gracie Mae Malloy
Andrew Vassil
Will Hennessy
Zach Hoechstetter
Merrill King
Brady Wolfe
Brady Scott
Holly Moore
Ian Rice
Sami Petrucciani

And for the angels who watch over us:

Jack Sanders - January 8, 2008
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, March 17, 2008 7:37 PM EST

We had a great weekend!

Ben has gotten to feeling like his old self again. Chris and I were talking about how we hadn't heard Ben's laughter in a month and how we really missed it. Then we realized that we hadn't heard Jeremy's either! They were crackingn each other up. Sometimes the conversation got a little inappropriate (you know boys!) but it was worth letting them go just to hear their deep belly laughter!

On Saturday, the boys' baseball games got rained out. So, we headed down to Fado's to shave some heads for St. Baldrick's. The AFLAC team brought in over $33,000 for childhood cancer reasearch! Unbelieveable! Ben got to take the first swipe at Mr. John's head and actually seemed to enjoy it. I know, you're wondering where the pictures are! They're coming!!

The big draw of the day was for the childlife specialist at the clinic, Karen. She is the wonderful lady that ensures that all the children are well informed about what is happening to them and their bodies on a daily basis. She is kind and gentle and outrageously goofy which make Ben love her all the more. Karen decided to have her head shaved in honor of the kids. On a typical day, Karen sports a headful of curly brunette locks, so the task was not a small one. She braved the clippers and had it all taken off! We saw her up close and person today and she is more beautiful than ever. I think Ben was hoping to be able to tease her a little, but he said she didn't even look funny! She has definitely taken a deeper plunge into the career she has chosen. I'm sure she will gain tremendous insight with this experience. She did tell me today, as I rubbed her head, that it hurts her when people rub her head and go against the natural growth of the hair. I looked over at Ben and he was giving us the biggest nod I'd ever seen. So there ya go. Congrate, Karen!

Then on Sunday we went out to brunch to celebrate BeBe's birthday and then did a little furniture shopping. Basically, we had a fun and relaxing weekend. Something we haven't had in a while.

Today, Ben went to school for half a day then we headed down to the clinic for a CBC. Turns out that all of his counts are low. This is expected with the HDARA-C. So, tomorrow we'll be spending the majority of the day at the clinic getting a transfusion and platelettes.

Thanks for all your prayers!!!

Peace to all of you!

Belinda, Chris, Jeremy and Benjamin

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

Robb Taylor
Sean Dever
Jake Rivers
Annie Coyle
William Olson
Kylie Barry
Gwen Mason
Gracie Mae Malloy
Andrew Vassil
Will Hennessy
Zach Hoechstetter
Merrill King
Brady Wolfe
Brady Scott
Holly Moore
Ian Rice
Sami Petrucciani

And for the angels who watch over us:

Jack Sanders - January 8, 2008
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, March 13, 2008 43:00 PM EST

Ben's home!

He was sent packing about an hour ago. Although he developed a fever this morning, the docs are certain that since all of his blood cultures came back negative the fever is most likely from the HDARA-C rather than a bug. He also got a dose of PEG and Neulasta.

We'll try to make it to school next week. He's been asking to go for a few days now so I know he'll be excited to get back to it. This weekend he has his first baseball game but we'll have to wait and see how he feels before deciding to participate in that. Otherwise, you just might see him down at Fado's Irish pub shaving heads for St. Baldrick's!

Peace to all of you!

Belinda, Chris, Jeremy and Benjamin

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

Robb Taylor
Sean Dever
Jake Rivers
Annie Coyle
William Olson
Kylie Barry
Gwen Mason
Gracie Mae Malloy
Andrew Vassil
Will Hennessy
Zach Hoechstetter
Merrill King
Brady Wolfe
Brady Scott
Holly Moore
Ian Rice
Sami Petrucciani

And for the angels who watch over us:

Jack Sanders - January 8, 2008
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, March 12, 2008 10:30 AM EST

Hi all!

We got to the clinic yesterday around 2pm. In our rush to get out the door, I forgot Ben's numbing cream for his port. So, as soon as we got to the clinic, I made a beeline to the infusion room to request a tube of Emala cream. Ben lifted his shirt as I prepared the cream and he looked at me with a very confused expression. "I don't see my port" he said. Ben's port is located directly in the center of his chest and sits on top of his chest bone. As you can imagine, because there is little fat in that area, his port is particulary obvious even when he has a shirt on. But because of the steroid, he has plumped up quite a bit and is retaining a great deal of fluid. So, it did make it more difficult to see the port. He began crying because he thought his port was gone. I assured him it was there and we got on with the cream.

Once in the examination room, he became upset again nervous that Kim would not be able to access his port because it wasn't there. Terry took his finger and placed it on top of the port, "There it is." That made him feel much better. He was accessed and we were done. Counts came back and were all good enough for admittance to the hospital and 4 doses of HDARA-C. Most importantly, Ben was happier and feeling great.

The new Aflac floor didn not let us down. Once we got to the room, Ben plopped himself down on the bed and put in a Playstation game. I kid you not, he played that thing for 5 hours straight only taking a break to eat dinner and go to the bathroom on occassion!

Ben got his first dose around 5:30 and by 8:30 was already feeling the ill effects. He threw up once before we asked for the BenPhen concoction. It knocks him out and he sleeps alot, but it's got to be better than feeling like he has the flu.

He just got back to the room. So, I've got to go. He went to the hospital school this morning, surprisingly at his own behest, and LOVED it! He's been reading alot lately and I think he was excited to show off his new skills!

Peace to all of you!

Belinda, Chris, Jeremy and Benjamin

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

Robb Taylor
Sean Dever
Jake Rivers
Annie Coyle
William Olson
Kylie Barry
Gwen Mason
Gracie Mae Malloy
Andrew Vassil
Will Hennessy
Zach Hoechstetter
Merrill King
Brady Wolfe
Brady Scott
Holly Moore
Ian Rice
Sami Petrucciani

And for the angels who watch over us:

Jack Sanders - January 8, 2008
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, March 7, 2008 1:58 PM EST

Hi!

Just got back from Ben's LP which concludes this re-induction phase. Next Tuesday he'll be admitted to the hospital to start the Intensification II phase. He'll be getting HDARA-C which gives him flu-like symptoms, so, I can't expect he'll be in good spirits.

But for now, he's done with the steroids and diabetes!! And feeling pretty good. His appetite is still raging and he's noticing the effect. He caught a glimpse of himself in the mirror the other day as he got ready for a bath. He rubbed his belly and said ,"I'm so fat!". Didn't seem to bother him too much, thank goodness. But it also didn't seem to slow his eating down either! I'm sure by this time next week we'll be pleading for him to eat something.

Peace to all of you!

Belinda, Chris, Jeremy and Benjamin

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

Robb Taylor
Sean Dever
Jake Rivers
Annie Coyle
William Olson
Kylie Barry
Gwen Mason
Gracie Mae Malloy
Andrew Vassil
Will Hennessy
Zach Hoechstetter
Merrill King
Brady Wolfe
Brady Scott
Holly Moore
Ian Rice
Sami Petrucciani

And for the angels who watch over us:

Jack Sanders - January 8, 2008
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, March 3, 2008 10:58 AM EST

We're done! Ben was taken off all of his insulin last night! Blood sugars for the past couple of days were low and steroid amount was also reduced. Now that the diabetes is over with I'm hoping the doc will take him off of the rest of his steroid since this is an additional week of the med just to keep an eye on his sugar levels. Also waiting to see if we can take him off the Zyprexa which is used to maintain some calm during the steroid phase.

PHEW! We have a week off then Ben will be in the hospital on the 11th for HDARA-C. Hopefully in the joint for only a few days. Jeremy and Ben are looking forward to it because we'll actually get to stay on the new AFLAC floor for more than an hour and take advantage of all the new amenities! My kids are wierd! :)

Next Saturday, Ben should be out of the hospital just in time to shave John's head!!!

Peace to all of you!

Belinda, Chris, Jeremy and Benjamin

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

Robb Taylor
Sean Dever
Jake Rivers
Annie Coyle
William Olson
Kylie Barry
Gwen Mason
Gracie Mae Malloy
Andrew Vassil
Will Hennessy
Zach Hoechstetter
Merrill King
Brady Wolfe
Brady Scott
Holly Moore
Ian Rice
Sami Petrucciani

And for the angels who watch over us:

Jack Sanders - January 8, 2008
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, March 1, 2008 9:19 AM EST

Hi guys!

Ben had a clinic appointment yesterday. I was a little confused about the schedule and it turned out that he was only there for a CBC and transfusion if necessary. Fortunately, Ben’s body was quite happy with it’s own blood for the moment, thank you, and his counts were all good so we politely declined the transfusion and went on our merry way.

Yesterday was one of the most difficult days for us regarding his diabetes. He took the last full dose of his steroid in the morning and nothing in the evening. His Lantus was reduced that night to 6 units. But by bedtime his sugar level was 63. I gave him the requisite juice and waited 15 minutes. His sugar only increased to 66 and within the hour fell to a low of 57. One last attempt at raising the sugar got us to a comfortable 81 by 1am. I got up at 2am and re-checked. 65. I woke Ben up again for another snack. This time he asked for a pb&j with a milk chaser. Fifteen minutes later, we found ourselves at 53. How could his sugar go down? I coaxed him into drinking 8oz. of juice and an hour later the meter read 100. We were able to squeeze in a few zzzzs and when we woke in the morning he felt sluggish and weak. Not surprisingly, his sugar had fallen once again but this time to 43. I called the doctor who told me that I was doing the right thing. The insulin just ended up being too much for the reduced amount of steroid. It’s all just a guessing game. Tonight the endocrinologist suggested still a lower amount of Lantus at 4 units.

I’m taking this all to be a good sign that we will have our “old” Benjamin back soon and that the diabetes was truly caused by the steroid. He will be completely finished with the steroid next Friday and what a glorious day that will be!

As we waited for the results of Ben’s CBC at the clinic yesterday, I spoke to Karen, one of the best nurses around, who took care of us the day we found out about Ben’s diabetes. She asked me how he was adjusting to all of the finger sticks and shots of his new routine. I told her that he hadn’t cried about any of it since the second day we were home. He understands that it is uncomfortable and annoying but so very necessary for his health. As I am preparing the shot Ben begins his little routine which includes a monologue of rationale:

“You can’t ever really be ‘ready’ for a shot. I mean, no one wants a shot so you can’t say you’re ‘ready’ for it. I’m still not ‘ready’ for it but I’m ‘ready’ for it to be over with. I know it doesn’t really hurt all that much but I’m still a little scared. But I’m just scared because I don’t like shots. And I know that if you didn’t have to give me a shot, you wouldn’t do it because you don’t want to hurt me. If someone said, ‘Ben needs to get one shot OR you can have a hundred shots’, you would tell them to give you a hundred shots. I know you wouldn’t hurt me, mommy. OK. I’m ready.”

Karen was impressed with how well he is handling this whole thing and remarked about his exceptional coping skills for a 6 year old. I mentioned the same thing to Ben a couple of days earlier. Still, after 4 years of fighting cancer, this little kid of mine finds every opportunity to amaze and inspire me. Oftentimes I feel he is leading the way and we’re desperately trying to catch up. The pace he sets is grueling at times but hopeful in every respect. He has been beaten down so many times in this journey and doesn’t hesitate once to just dust off his knees and keep on going. Hmmm….if I didn’t know better, I might read back on this and think I was describing JC himself. Is it a coincidence that all of this recent commotion is occurring at this particular time of the year? Is it all a tangible reminder of what He endured for everyones' sake but His own? Well, if it is, Ben has taken to the task with considerable honor and grace. If his story helps you to have a more fulfilling experience during this Lenten season, that would be the icing on our cake.

Peace to all of you!

Belinda, Chris, Jeremy and Benjamin

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

Sean Dever
Jake Rivers
Annie Coyle
William Olson
Kylie Barry
Gwen Mason
Gracie Mae Malloy
Andrew Vassil
Will Hennessy
Zach Hoechstetter
Merrill King
Brady Wolfe
Brady Scott
Holly Moore
Ian Rice
Sami Petrucciani

And for the angels who watch over us:

Jack Sanders - January 8, 2008
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, February 22, 2008 8:43 AM EST

Two weeks down and one to go! Well, kinda...

This is the second day of Ben's last week of full dose Dexamethasone. We saw Dr. B yesterday and he decided to add a week of the steroid so that we can taper Ben off of it slowly rather than an aburpt hault to the med at the end of this week. Because of the diabetes, Dr. B wants to make sure that we monitor Ben's insulin very closely and a taper of the steroid would make it easier for us to do this. I don't know if you all remember, but during the summer of Ben's initial diagnosis year, he fought off a low glucose coma. They attibuted that to the steroid affect as well. That episode cut us all off at the knees and we'd prefer not to experience that again!

This round of steroid is really beating him up. On occassion he will complain of pain in his legs which, fortunately, Tylenol helps to relieve. For the last two days he's had excruciating lower back pain which we've used Tylenol with codein to combat with very little luck. We were told to give Ben an Advil instead and that seems to have done the trick so far.

"Steroid Ben" is peeking through the curtains every once in a while. Yesterday was filled with moments of tyranical behavior followed by the sweetest apologies you've ever heard. I made sure that Ben realized that I was not correcting his outbursts because I knew that it was the steroid making him act that way so there was no need for apologies. He would feel bad anyway. :( We pulled out a dozen colorful dinner plates that our friends, the Steinkirchners, had bought for Ben the last time he was on steroids. We put them in a pillowcase and took full swings at them with a hammer and broken them into smithereens! What a tension release! I recommend it for everyone! Ben was elated! Once "Steroid Ben" has quieted down, we'll make some kind of mosaic project with the pieces. Ben was thinking of making a table that we could use by the pool! He's very creative!

He counts were good yesterday so he received all the scheduled chemos (PEG, Vincristine and Doxirubicin).

We're getting there. One day at a time, but we're getting there.

Peace to all of you!

Belinda, Chris, Jeremy and Benjamin

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

Sean Dever
Jake Rivers
Annie Coyle
William Olson
Kylie Barry
Gwen Mason
Gracie Mae Malloy
Andrew Vassil
Will Hennessy
Zach Hoechstetter
Merrill King
Brady Wolfe
Brady Scott
Holly Moore
Ian Rice
Sami Petrucciani

And for the angels who watch over us:

Jack Sanders - January 8, 2008
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, February 19, 2008 9:22 AM EST

Hi everyone,

Deeeeep breath.........................Sorry it’s been a few days but we’ve been busy adjusting.

I took the "day off" on Sunday and tried to feel sorry for myself. Tried as hard as I could to get upset about what Ben is having to deal with now and, you know what? It worked. I felt like crap. And it didn’t help a bit. So, I grabbed myself by the collar, slapped myself in the face, tried to kick myself in the butt and told myself it was time to roll up the sleeves and do whatever needs to be done to get us through this phase.

Chris and I are getting pretty good with the new routine of carb counting and shot giving. Ben, on the other hand, is still confused about the whole thing and doesn't understand all the limitations of his new diet. We don't expect him to understand any of it, but he's curious and has lots of questions. He has figure out, however, that mealtime is also shot time. He tried manipulate the system our last day in the hospital. A couple of hours before dinner he was ravenous. Nothing could distract him from the thought of food. Once his food tray came in, he curled up into a ball and told me that his stomach hurt, he thought he was getting a fever and said he couldn't eat. We called the nurse in and she did a full exam on him including vitals. Ten minutes later the nurse came back to see if he'd eaten anything so that we could adjust his insulin shot. I told her that his stomach hurt so much that he couldn't eat. She took me aside and asked me to whisper in his ear that he needed to get a shot whether he was going to eat or not because his last sugar reading was elevated. He pulled away from me and said, "What?! I'm still going to get a shot anyway?!" Suddenly, his appetite showed up again and he ate the majority of his dinner and then some.

At home it is slowly but surely becoming routine. We finally convinced Ben to take some of his insulin shots in his stomach. The nurses on the endo floor told us that most of the kids prefer it in the stomach because it hurts much less. Yesterday, he and I sat on the floor. I put him between my legs and administered the shot. Without even a wince he looked and me and smiled. “That didn’t hurt at all!” Throughout the day he would remark that he wouldn’t be scared of the shots anymore because he knew they wouldn’t hurt when he got them in his stomach.

Fortunately, we are not seeing much of the steroid behavior we had seen in the past. For the most part Ben is “Mr. Cool”, very even keeled and mellow. That’s from the Zyprexa. The hunger is certainly more than normal but most definitely not the frenzy we’re used to when it comes to steroids. I guess it’s true, God only gives us as much as we can handle. Let me tell you, I think we’ve reached our limit!

Jeremy is obviously and understandably rattled by the new change. His fear of dying crept up on him the other night and he’s feeling uncomfortable eating again. I don’t know if I mentioned this in previous journal entries but about a month ago, Jeremy had lost about 10 lbs. from fear of choking and dying. We worked diligently with his psychologist and overcame the obstacle just recently.

Ben has his next clinic appointment on Thursday for Vincristine, PEG, and Doxorubicin. I will talk to them further about the future use of the steroid. When Dr. Lew first learned of Ben’s diabetes, his inclination was to stop the Dexamethazone because it was obviously the cause of this whole fiasco and could make it more difficult now that Ben is more susceptible to infection. But since the steroid’s role is to kill cancer cells, I asked if we could wait and just see if we could get his sugar under control first. Hopefully, he will view this week as successful and continue Ben on the steroid.

So, we thank you once again for keeping us at the forefront in your prayers. I keep reminding myself that this could be so much worse and try to find blessings through this whole journey.

Peace to all of you!

Belinda, Chris, Jeremy and Benjamin

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

Sean Dever
Jake Rivers
Annie Coyle
William Olson
Kylie Barry
Gwen Mason
Gracie Mae Malloy
Andrew Vassil
Will Hennessy
Zach Hoechstetter
Merrill King
Brady Wolfe
Brady Scott
Holly Moore
Ian Rice
Sami Petrucciani

And for the angels who watch over us:

Jack Sanders - January 8, 2008
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, February 16, 2008 12:00 AM EST

We're home! It's late so I'll update more in the morning.

Thanks for the prayers!!

Love,
Belinda

Friday, February 15, 2008 10:31 PM EST

Ups and downs and highs and lows. I feel like we've been riding the wave of Ben's blood sugar levels!

We had a relatively restful night. Ben's sugar had come down quite a bit so his trips to the restroom also decreased. The tech came in every 2 hrs for vitals and a sugar check. Fortunately, Ben would only wake up after the finger stick and would go right back to sleep.

He woke up in a great mood and was ready for breakfast. Only thing is...his diet is now restricted and there is protocol to follow. The dietician quickly nixed the 1600 calorie diet the endo doc perscribed. She knew that with the steroid on board, that amount just wouldn't cut it. Ben ordered eggs, bacon, waffles and juice. But before he could eat it, we needed to get a sugar reading. It was at 176 at the last reading but quietly crept up to 250 before breakfast. The carbs in his meal were calculated and the insulin dose was measured. One quick stick and a whole lot of anxiety later, Ben was allowed to eat. And eat he did!

Afterward, we decided to go down to the gift shop for a Webkin. Ben decided that with all these sticks he's getting, surely he deserved a present! And Ben insisted that Jeremy be allowed to pick one out for himself too. Did I mention that Jeremy spent the night? It's a thing with him. The first night of any hospitalization, Jeremy spends the night with Ben. I think he's more comfortable being around the action and getting a real feel for the seriousness of each situation.

Anyway, as Ben sat on the floor putting on his shoes, he got on his knees to stand up but knelt on his line by accident and pulled it clean out of his port leaving a tidy little scratch down the center of his chest. He was mortified! In four years of this, never has he pulled out his line. I think that's a pretty good track record.

He bravely endured a re-access and cleaning of the site which stung like crazy with that fresh wound from the needle. But he got on with it and off we went to the gift shop!

About and hour later, he started his chant for the day, "I'm so hungry. When will my food get here? I'm so hungry. When will my food get here?"

So, the routine is, sugar check and insulin shot before each meal. The insulin before meals is a short acting type called Humalog. He also gets a long acting type called Lantus at night before bedtime. Ben's never liked shots so this news did not sit very well with him. Fortunately, he can have snacks in between meals but they can only consist of protein items or sugar free foods. Which, at this point, actually works in Ben's favor. Whenever he's on steroids, he typically craves protien foods. He tells me that he's still afraid of the shots but he knows that they really don't hurt that much.

(I hope you'll excuse me if I'm jumping around. I'm a little tired and I'm starting to feel like I'm not making sense.)

Thoughout the day, Ben's sugar fluctuated around the 200-300 range. Still high, but much more reasonable. The best news we heard today was that there were discharges on the AFLAC floor and we'd be moved down to be with all our cancer friends!

We waited all day and were finally told to pack up the room around 4:30. We saw Dr. Lew and he checked Ben out then told us to come down to the newly renovated AFLAC wing where they had a bed waiting. We were so excited!

As we made our way down the hall, the endo nurse stopped us and said they'd decided to check is blood sugar and do the whole bit including eating dinner back in our old room. So, we hauled all our stuff back in the room which had already been stripped of everything in preparation for a new patient. We waited and waited. Finally, they decided just to do the sugar check and brought us to the AFLAC floor for the shot and dinner.

As we entered the new wing, you could hear the chorus singing! It is beautiful! So brand new and big and bright. We were escorted to our room which we were told was the absolute biggest on the floor. It was palacial! Built in Playstation, flat screen, room to play football (Ben pointed that out) and quiet. We were loving it!

We got comfortable. Ben got his shot and began eating dinner. Maybe 30 mins. later, Dr. Lew walked in. "Don't hate me" he says. In his rush to get Ben on the floor where he'd be more comfortable, he failed to check with the Endo doc about the move. Upon hearing of the room change, the endo doc kindly, but firmly put his foot down. Ben was to return to the endo floor. The boys were crushed. So was I.

By 7:30, we were back on the 3rd floor and got a rousing welcome back from all the nurses who had quickly become smitten with Ben. We were all ok. Just a little disappointed. We knew, however, that we were in the right place with the people who deal with blood sugar all day long.

I spoke to Dr. Baldwin (endo) about a pattern I thought I'd seen developing. Each time Ben had a meal, he would become listless and weary. After lunch he even took a nap. After dinner he was about to fall asleep again, but was distracted with all the talk around him. At 8:30 he ate a snack (eggs and bacon!) and started to follow the same pattern. They checked his level. 232. Ruled out low blood sugar. Dr. Baldwin was stumped. I'll bring it up with the oncologist tomorrow. Hopefully he will have and answer.

OK, I know I've said alot, but I have to mention by big boy, Jeremy. What a amazing person he's turning out to be. He was with Ben and me last night and all day today. He's getting really good and deciphering my moods and how to handle me. He's attentive when I'm frustrated and helpful when I'm feeling discouraged. He entertained Ben all day long, helped him to the bathroom, hauled luggage back and forth and even sat in on the diabetes class and learned how to administer a shot. All without a word of complaint. Am I proud of him? That word doesn't even come close.

Thanks for the prayers.

Love,
Belinda, Chris, Jeremy and Benjamin

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

Sean Dever
Jake Rivers
Annie Coyle
William Olson
Kylie Barry
Gwen Mason
Gracie Mae Malloy
Andrew Vassil
Will Hennessy
Zach Hoechstetter
Merrill King
Brady Wolfe
Brady Scott
Holly Moore
Ian Rice
Sami Petrucciani

And for the angels who watch over us:

Jack Sanders - January 8, 2008
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, February 15, 2008 12:10 AM EST

OK. We found out this afternoon that Ben has steroid induced diabetes.

His blood sugar last week was 250 and stayed consistenly elevated as found during his ER visit last Sunday. For the past four days he's had increased thirst and has had bedwetting accidents each night. He also told me that on Monday, he had trouble seeing the Activeboard (updated version of blackboard) at school and that the tv screens also seemed blurry.

They did a urine test on him today at the clinic and realized that the sugar was now spilling into his urine. Another blood test confirmed elevated glucose at 900 . Normal range is anywhere between 75 - 120. After realizing that the IVIG he recevied today also contains some sugar, the test was run again - this time as a finger stick rather than a blood draw from his line which probably held residual IVIG. Glucose level was 600 .

Ben was immediately admitted to the hospital and has had, up until this point, three doses of insulin. After the first dose, his glucose level was 450. So, it's working.

They will monitor his level every 2 hours and we will begin a 2 day training course on how to administer the insulin at home for the balance of his steroid phase which is 2 more weeks.

Ben is feeling ok. He is very tired and slightly lethargic. He has accepted all of these new sticks and pokes he's been getting with very little resistance. He is, however, very confused why this is his life.

When we got to the endocrinology floor and checked into our room, the tech checked for Ben's ID bracelet. He hadn't received it yet, so she went to get it.
"Where is she going?"
"She's going to get you an ID bracelet. She has to make sure you're Ben Smith" I told him.
He lifted his eyes upward and pleaded, "Please let me be someone else. Please."

Thanks for the prayers.

Love,
Belinda, Chris, Jeremy and Benjamin

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

Sean Dever
Jake Rivers
Annie Coyle
William Olson
Kylie Barry
Gwen Mason
Gracie Mae Malloy
Andrew Vassil
Will Hennessy
Zach Hoechstetter
Merrill King
Brady Wolfe
Brady Scott
Holly Moore
Ian Rice
Sami Petrucciani

And for the angels who watch over us:

Jack Sanders - January 8, 2008
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, February 11, 2008 12:32 PM EST

***************Quick Update************
Ben spiked a fever around 11:00 last night. It started in typical fashion, nausea, vomitting, chills and finally fever. We packed up a bag and headed to the hospital.

Ben insisted on an AFLAC nurse to do the port access and as Ben's luck would have it, one of our favorites, Nurse Joy, walked into the room. What a surprise as Joy does not usually work the night shift! Ben's blood cultures were tested and ANC was up around 5000. Only number in question was his sugar level which was in the 200s. Dr. assured us that the steroid most probably had everything to do with that number.

He got a dose of Rocephan and we were sent home. But not until 5am! Which was about 2 hours after Ben's best bud, Ryan, was discharged! In his weary state, Ryan knocked on Ben's door before leaveing but Ben was fast asleep. "Make sure you tell Ben I stopped by," he said and collaped in his mom's arms. He'd been in the hospital much longer than we had but fortunately both boys were able to go home.
***************************************
Sunday, February 10, 2008 9:07 AM CST
So much to tell you all, I just hope I remember it all!

In last weeks episode . . . we were headed off to Disney world for some R&R before starting Ben’s reinduction phase. We left town right after the the boys brought home two basketball victories! I think we got to Orlando quicker than we ever have before because we were all so ready for some fun.

Got up early Sunday morning and headed off to Animal Kingdom. Last year, the Mt. Everest ride was the boys’ favorite ride, so we decided to jump start our adventure by visiting the YETI! We got to base camp and Jeremy froze. He decided to sit out and let Ben and I go first. As soon as we got on the rollercoaster, Ben handed me his hat fearful that it might fall off during the ride. We took off down the track and headed for the first tunnel. As soon as we emerged, I could already tell that Ben was not into it at all. So began the theme of the weekend, “No thanks, to rides in complete darkness”. I don’t know if you realize it or not, but Disney is designed so that the majority of the rides are indoor and many of them have moments of complete darkness. Hmmm. Chris and I were stumped. Both of the boys were adamant about sticking to the theme. So…….we did everything BUT the rides in the dark and ended up having a completely different Disney experience than we’ve ever had before. It was still tremendously fun and enjoyable, but much more calm and relaxing. I guess that was the key. We have enough “heart stopping” moments in our regular routine that maybe the boys somehow felt that we didn’t need that kind of excitement on vacation too.

We ended the day at Epcot where the boys went from country to country collecting stamps and decorations for masks that they’d gotten in Germany. We made it back to the hotel just in time for the second half of the Super Bowl. Ben’s a big Manning fan, you know. He routed for Peyton last year and he was all about Eli this year making sure to wear his #10 jersey to Disney that day. Whenever he saw a fellow Giant fan he would make sure to reinforce the loyalty by raising a fist and bellowing out their mantra, “GO GIANTS!” So, after a day at Disney, to go back to the hotel to see Eli’s winning touchdown pass at the last few seconds of the game…well, can I tell you….Ben couldn’t have been happier!

On Monday we started out at MGM Studios where Ben recreated his role as a Star Wars “Padewan” at the Jedi Training camp. This time he was more prepared and held off even more Dark Side forces! (Video coming soon!)

We spent half of the day there then headed off to the Magic Kingdom where Buzz Lightyear is king! That ride never fails to entertain. The overall best thing that day was the “Lights, Motor, Action” car stunt show. We’d seen it a couple of years ago, but Ben didn’t remember it all that well. This time, he was thoroughly captivated by the car crashes, the motorcycle chases, the explosions, the guns and stunt men. He and Jeremy bought souvenir guns shortly after and created their own show!

The last day, as is tradition, we spent at the Lego store in Downtown Disney. The boys created their racecars out of the bins of Legos set out for the kids to play with, then raced them against each other. Jeremy’s car was faster and won just about every time, but based on appearance, I’d have to vote for Ben’s designs!

It was a short and action-packed weekend, but it definitely helped us recharge our batteries a bit and enjoy being together as a family.

Upon returning home, I received a number of texts from friends warning us of the flu bug that seemed to be taking over the school. We decided pretty quickly that Ben would not go to school for the balance of the week. I hated sending Jeremy into the frontline, but the school took all the right precautions and scrubbed down the school at the end of every day. They monitored the kids that checked out each day and as it turned out, the flu bug was not as prevalent as was thought in the beginning of the week. Ben stayed at home anyway and got a visit from Mrs. Ascari on Friday.

Thursday Ben started the reinduction phase. He got an LP and interthecal that morning. The anesthesiologist used a little less Ketomine this time to try and help Ben feel less “weird” after waking up. Typically, he would wake up and see multiples of things. He’d say that we had two heads, four eyes, two noses, etc. Watching television would make the experience worse. Instead of 25 ccs, he got 20ccs of Ketomine and it seemed to really do the trick. He woke up very pleasantly and asked for a cupcake he’d seen someone take to the nutrition center. He gobbled down not one, but two cupcakes before asking for something to drink!

Afterward, Ben got a vincristine push and a dose of Doxorubicin. They held off on the PEG IV because Dr. B wanted him to be on his Decadron (steroid) for 24 hours to increase the effectiveness of the PEG. We left the clinic with just enough time to pick up Jeremy from school.

The next morning Ben and Mrs. Ascari spent and hour and a half doing everything from math to reading, religion to spelling and money counting. They were busy! Then we left for the clinic for the 1 hour PEG infusion. We were both in a bad mood. Both didn’t want to be there again and just kind of went through the motions until we were done. Again, we left the clinic just in time for school to let out and meet Jeremy and some friends at our house for a little end-of-the- week get together. Ben and played basketball and football the majority of the time and ended the day exhausted, but happy.

Day 2 of the steroid, Ben played is last basketball game of the season against the Hawks – the only team to beat them all season. He was all charged up for the game. He ran up and down the court, played good defense and offense and even tossed up a few to try and score. By the second half he was dragging. He couldn’t quite muster up the energy to get his hands up, he lost the ball a couple of times and became fixated on the clock. 2 seconds before the final buzzer, Ben covered his ears. They won, but he was more concerned about muffling the sound of the buzzer. We came home and ate lunch. Twenty minutes later he asked me if we had any corn dogs or shrimp….uh oh….here we go. I went to the store and stocked up on all of his typical steroid cravings. As soon as I got home, he dove right into the frozen waffles, then had a corndog. He waved off the shrimp asking me if I’d picked up some smoked salmon by chance. That’s a new one!

Another interesting thing, right after his game Ben asked me if I could call the Greens to see if Jeffery and Nikolas could come over. We probably haven’t seen the Greens since the last time he was on steroids. And when he was first diagnosed and on a months worth of steroids, it was the Green boys he wanted to play with then too! It’s almost as though he associates the steroid experience with the Greens. So, I called Denise and she happily brought Jeffery over. Ben was elated but unable to keep up. He’s also been on Zyprexa since we got home from Disney. Since it takes a couple of days to kick in, we started it before the steroid hoping to calm the impending storm. I think it’s helping but he is definitely sleepy while on that stuff. He took a nap while Jeffery was here and didn’t wake up until the babysitter came. Chris and I were headed out to a school function and had to wake him up to eat dinner. Then his emotions got the better of him. He cried as we left the house but seemed to calm a bit when I told him we were going to the party to see if we could with the $10,000 raffle!

Throughout the night he asked Elaina (the sitter) to text me to find out what time we were coming home. Elaina did a great job holding him off for a while so that Chris and I could be out for a couple of hours. Just as we decided to head home, they called the last winning raffle ticket, Chris and I won $1000! I texted the news to the boys. By the time we got home, Ben was asleep again. I bent down to kiss his cheek and whispered, “We’re home and we won $1000.” He woke up slightly, wrapped his arms around my neck and said, “good job, mamma” and slept for the rest of the night.

So, we’re on our way. Thanks for praying for us and helping us get through this thing. We feel your love and support and thank God for you every day!

Love,
Belinda, Chris, Jeremy and Benjamin

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

Sean Dever
Jake Rivers
Annie Coyle
William Olson
Kylie Barry
Gwen Mason
Gracie Mae Malloy
Andrew Vassil
Will Hennessy
Zach Hoechstetter
Merrill King
Brady Wolfe
Brady Scott
Holly Moore
Ian Rice
Sami Petrucciani

And for the angels who watch over us:

Jack Sanders - January 8, 2008
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, January 29, 2008 5:30 PM EST

Hi!

All is well in the Smith household. Ben finished up his last chemo round of the Intensification 1 phase last Friday. He got VP16 and Cyclophosphomide. Now he has about a 10 day break and he’s feeling good!

Last Thursday Ben brought his old port (the one that broke and had to be replaced) to school with him. He thought he might show it to his class even though it wasn’t his day for show and tell. I thought this was pretty interesting because shortly after removing that port I suggested he bring it to school to share with his friends. He gave me a look as though I was absolutely crazy! So, 3 months later and for him to bring it up himself, I saw to be a very brave and surprising idea.

Later that day, I received an email from his teacher, Mrs. Rex, saying that Ben would be showing and telling later that day. Then she commented on how well adjusted and comfortable Ben has become at school. I was certainly glad to hear it from her, but noticed myself that something was a little different in his attitude. But different in a positive way. I was happy.

So, on Friday, Ben and I went to the clinic for the last round of chemo in this phase. He woke up on the “right” side of the bed and was in a great mood. We sat in the waiting room and he watched a lady sitting next to us as she filled out her Sudoku puzzle. He was in such a silly mood that he went right up to her pointed to her book and said, “Mom, can you get me a book like this?” I pulled him out of her way and she kindly ripped out a page for him to try.

On our way to the infusion room, we saw a sleeping Mary Beth Dever in a chair as they waited for Sean’s level results. We chatted for a while and I couldn’t believe how healthy Sean looked. He’s gained about 10 lbs and he wears it well! Ben did his goofy little run around the room thing when he doesn’t know what to say but he and Sean did exchange smiles. Then Ben chased Karen, the child life specialist, down the hall into the infusion room.

Once in the infusion room Ben continued his new attitude rampage. He insisted on pushing his IV pole as he made his way through the room, even wheeling it into the bathroom by himself and asking me to stay put. We were assigned a room with a bed since we’d be there the entire day but he was non-stop and never lied down once. He played some wii games, chased Karen a little more, played a video bowling game, insisted on collecting and handing in his own urine sample, successfully completed a scavenger hunt which he asked Karen to put together for him, played with the Star Wars action figures that he collected at the end of the hunt, painted pictures, played xbox games and watched a little tv. I was exhausted just keeping up with him. At the end of the day, Karen said, “he seems different today”. She noticed it too. I really can’t put a finger on it but it feels as though he’s becoming more accepting of who he is and the challenges he faces. He just seems more comfortable and confident in everything he does. He is almost 7 years old afterall but he has definitely dealt with so much more than I have in my 43 years. (Did I just reveal that?)

So…………we’re good. We will be taking a deep breath before the next round starts on February 6th when he begins his steroid phase and will be outpatient for another LP. We’ve decided to take another trip to Disney. We’ll be there for a few days. Just enough to recharge.

Thank you all again for your encouragement and prayers. You’re getting us through this!

Love,
Belinda, Chris, Jeremy and Benjamin

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

Sean Dever
Jake Rivers
Annie Coyle
William Olson
Kylie Barry
Gwen Mason
Gracie Mae Malloy
Andrew Vassil
Will Hennessy
Zach Hoechstetter
Merrill King
Brady Wolfe
Brady Scott
Holly Moore
Ian Rice
Sami Petrucciani

And for the angels who watch over us:

Jack Sanders - January 8, 2008
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, January 20, 2008 3:12 PM EST

Finally!
Ben finally cleared his methotrexate at around 2:30 yesterday. The level was .11 but the docs felt it was low enough to start the IVIG. We could not started it sooner because you can not run it with the sodium bicarbonate fluid they use to flush the methotrexate.

So, after all his premeds (tylenol & benedryl) Joy hung the IVIG around 3:30. After all the calculations and taking under consideration that we had to use demerol the last time he had IVIG to stop his rigors we thought Ben was on course to finish up at around 9:30. Well, I don't know if it was a faulty pump or what (actually that's what I think it was), the IVIG finished up about an hour early! So, Chris and Ben quickly packed up the room and headed home. They met Jeremy and I at the Davis' house who kindly invited us to dinner and Ben plopped himself down to polish of a steak dinner (which is coincidentally, his absolute favorite meal!)

Another thing that worked in Ben's favor was the weather. Although we only got about and inch of snow, his basketball game was canceled! (Stop laughing all you northerners! That's just how we do it down here in the south!) So, he should be able to play in their make up game in a couple of weeks.

He's feeling good and out and about the neighborhood. He and Jeremy are trying to enjoy what little snow there is left on the ground.

Thanks for keeping up with us!

Love,
Belinda, Chris, Jeremy and Benjamin

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

Sean Dever
Jake Rivers
Annie Coyle
William Olson
Kylie Barry
Gwen Mason
Gracie Mae Malloy
Andrew Vassil
Will Hennessy
Zach Hoechstetter
Merrill King
Brady Wolfe
Brady Scott
Holly Moore
Ian Rice
Sami Petrucciani

And for the angels who watch over us:

Jack Sanders - January 8, 2008
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, January 18, 2008 3:36 PM CST

Hi there!
Ben is clearing his HDMTX extremely fast. He was at .4 at midnight last night just as it finished infusing. They'll take another level in a couple of hours. If the level is low enough they would probably let him go home, but we just found out yesterday that he should have been getting IVIG to help boost his immune system on a monthly basis. The last time he got it was Oct. 30th.

So, we took a level yesterday and found that it was pretty low. The norm is in the 400s and his is in the 200s. The IVIG will begin tomorrow around 8am and run for about 6 hours. They have to run it slowly because he rigored with it the last time he had it. So, he'll probably miss his basketball game, but hopefully we'll be home sometime early afternoon.

Right now Ben is sitting next to me in the library playing Wekinz on the computer and waiting for his bud, Ryan, to get down here for a hospital play date. He's feeling great!

Oh, and thanks, Mr. King, for bringing down an arm load of McDonalds for lunch today! Ben chowed down on both of the apple pies!

Love,
Belinda, Chris, Jeremy and Benjamin

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

Sean Dever
Jake Rivers
Annie Coyle
William Olson
Kylie Barry
Gwen Mason
Gracie Mae Malloy
Andrew Vassil
Will Hennessy
Zach Hoechstetter
Merrill King
Brady Wolfe
Brady Scott
Holly Moore
Ian Rice
Sami Petrucciani

And for the angels who watch over us:

Jack Sanders - January 8, 2008
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, January 16, 2008 1:48 PM CST

Hi everyone!
Ben and I just got to the clinic. They will access him here, do a quick CBC and physical then they'll take us over to the hospital. He's gotten so used to this whole thing that it doesn't even phase him anymore. As we were walking in he told me that he sometimes forgets where he is and thinks he's in a hotel when he's actually in the hospital! Says a lot for the kind of care he gets here.

We've got 6 hrs of hydration whenever he gets plugged in then they'll hang a 30 min HDMTHX bag then onto the 24hr bag. His goal is to get out of the hospital in time for his 11:00 basketball game on Saturday.

So, when I picked Ben up from school, he proudly showed me a Florida Gator key chain that Sean Dever brought by his classroom today. Sean's been feeling poorly for a while now. His chemo is really taking a toll on his body. Yet, he stays strong and finds the energy to go to school. And instead of feeling sorry for himself, Sean finds the compassion in his heart to try and make Ben's day a little better. Not a typical kid. An extraordinary one at the very least. I was so happy to know that Sean visited Ben today because since his diagnosis, Ben has only talked to him once. He gets very shy whenever I suggest visiting Sean when they're both in the hospital. Then before I know it, one of us is going home. So I asked Ben for the details,
"What did Sean say to you?"
"I forgot."
"What were you doing when he came by?"
"I don't remember."
"Did you ask him how he's been feeling?"
"I don't know."
Hmmmmm. Guess I was more touched than Ben!

Although he hasn't stopped playing with the keychain yet.

Love,
Belinda, Chris, Jeremy and Benjamin

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

Sean Dever
Jake Rivers
Annie Coyle
William Olson
Kylie Barry
Gwen Mason
Gracie Mae Malloy
Andrew Vassil
Will Hennessy
Zach Hoechstetter
Merrill King
Brady Wolfe
Brady Scott
Holly Moore
Ian Rice
Sami Petrucciani

And for the angels who watch over us:

Jack Sanders - January 8, 2008
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, January 8, 2008 9:23 PM CST

Finally, an update! No news is good news?

Well, as I mentioned in the previous journal entry, Ben was done with his HDMTHX in record time. What's even more impressive is that his mouthsores weren't nearly as bad as the last time. Dr. Lew perscribed Acyclovir anyway and it may have helped a little. Its just hard to tell.

Ben went to the clinic last week for VP16 and Cytoxin. It was the day after New Year's day and the boys were still out if school so Jeremy came down to hang out with us.

We had a great Christmas break. The boys were surrounded by family and presents for days and they loved every minute of it! Even when Ben was admitted the day after Christmas he still had a ball! One day the Clemson football team came by to visit, the next day his best bud, Ryan came down to spend the day along with two of his brothers. We slso got surprise visit from Jake Rivers who was there for a check up. Jeremy spent the night one night and they had a wii marathon! And as usual, when he has that much fun at the hospital he's always a little disappointed when he gets his discharge papers!

New Year's Eve rolled around and the boys got to spend the day with their great friends Will and Nick who recently moved to AR but were in town for the holidays. The next day we took our dirt bikes to Talking Rock arena, a local dirt bike track. The boys had a great time even though it was freezing that day.

Now they're back to school. Ben missed the first day, I think from pure nervousness but he made himself go on Friday and now he's just back to his old routine.

He's growing a nice head of fuzz these days which is nice to see but at the same time I can't help but remind myself that it won't last long. This Thursday Ben goes in for a spinal tap and chemo. Next week he'll be admitted for his last round if HDMTHX in this phase. Then he'll have a week off before we dive into steroids again. Not looking forward to that!

So, that's it for now. Thanks for keeping up with us and for your constant prayers. Please say a prayer for our cancer friend, Jack Sanders. He was 13 years old and was at this cancer thing for quite a while but unable to beat his second relapse. Please pray that the gates of Heaven are open wide for this wonderful child and that his family finds peace and comfort soon.

Love,
Belinda, Chris, Jeremy and Benjamin

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