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Monday, December 7, 2009 8:23 PM CST

I am not sure how many people actually check in on us anymore, and I'm not really sure what im gonna write. I guess its time for me now and how my life is going. First off, life without Brandon still sucks. I have had kids since i was 15 years old, now Shay is 17 and doesnt need me, so before Brandon died I didn't mind Matt growing up, or Shawna growing up or even Shay growing up cause I still had my Brandon. Now with him gone and teh rest of them almost grown, I really am not sure how life is gonna be for me. It is quite different not having a small child to take care of. So as they say life moves on, and I cannot stay in this place to long, if i do the depression will kill me. I feel it happening.

Wednesday, May 13, 2009 9:23 PM CDT

So since my last entry alot has changed. First, we went to THON and were so happy we went. We met some amazing students. I cried almost instantly when I seen Nikki and Micaela and Joe. Then as they are introducing the overall chairs, who do I see on the big screen, Joe and Brandon a picture that was taken last year. I cried like a baby. I had no idea how emotional it was gonna be. We went back and forth from the hotel to thon all weekend. We watched the Pep Rally and then on Sunday they had family hour which included a video of Rememberance. I could not believe how hard that was and thankfully I was being held up literally by my cancer family. I love them all and pray they never have to watch their child on that screen.

Anyway, in April I got a job at Williams Apothecary (a pharmacy) and absolutely love it. I have great days, good days, and bad days. But I am getting by. Life without Brandon sucks!! We are on vacation now and every place we go reminds me of him. We took a hike yesterday and my niece said to me how cool would it be to see a bear on the trail, I told her all I wanted to see was my dragonfly, and he was there a beautiful blue dragonfly. She went to take a picture of it for me and it was gone. Brandon never did like his picture taken. We also seen a lion mountian on skyline drive. But the best this was on Mother's day. I was feeling down cause when we were at Cracker Barrel a little boy walked in with a mohawk like Brandon had all I wanted to do was rub his head, but I knew his parents wouldn't appreciate it. Anyway on the way back to the condo a black bear ran out in front of us. He actually looked over as he was running. I know Brandon sent him to say Happy Mothers Day to me. Well now that I got myself bawling again I'm gonna leave you with that.

Jamie

Monday, January 12, 2009 9:20 PM CST

Hi everyone,
Not a whole lot has been going on. At least for me. I have been in a great depression, not really caring what happens to me. But I know Brandon would not want me to live my life like that. And I also have to live for my 3 other children. So here is what's going on in their lives.

We will start with Matt. Matt popped the question to his girlfriend on Christmas, she accepted. So now I have to come to the realization that Matt is not a little boy anymore.

Shawna will graduate High School this Thursday, then on February 9th she will be starting York Technical Institute's Medical Assistant program. I am so proud of her, but at the same time I have to come to the realization that she like Matt is growing up.

Shay is in the 10th grade. And he got his learners permit. So I guess I have to let him grow up too.

So back to my life, all my children are growing up and getting ready to leave me. Brandon is my baby, he will always be my baby. I miss him terribly.

I also want everyone to check out the you tube video Shawna did for Brandon. It is incredible. Go to youtube.com then in the search bar put in the story of brandon adam loose. Be prepared with tissues.

Well thats all for now.

Jamie

Tuesday, October 21, 2008 7:31 AM CDT

I thought the last update was hard, but this one is even harder. As most of you already know Brandon won his battle. He is residing in Heaven playing, running, and all the other things he couldn't do for so long. He is free from pain, doctors, hospitals and unfortunately for us he is free.

After my last update, I sat up till 3am watching my baby sleep. Not knowing that when I fell asleep it would be the last time I heard him breathe, say I love you, Brandon got his angel wings that morning. He was always trying to protect me, so I beleive he waited till I fell asleep before he went to meet God in Heaven. We all miss him so much. I try to be brave, but most times it doesnt work. I try to pretend everything is okay, but I truely dont know what to do without him. To try to go back to a normal life, I ask myself what is normal? We have been fighting the ugly beast for so long I forget what normal is.

I want everyone to pray the doctors find the cure for this ugly beast. Also, pray for our friend Cheyne Main. We thought he was going to meet Mr. NED, but the beast wont allow it. Pray for Cheyne, and all the other kids who have to continue fighting this ugly disease. Thats all for now.

Sunday, October 5, 2008 10:52 PM CDT

This is probably one of the hardest updates i have had to write. Brandon is not doing well. He is in constant pain, we now have him on a constant dilaudin (spelling) and valium to keep him from being upset. I know this is hard for some of you to read but the reality is Brandon is loosing his fight. He has given it his all for 4 and a half years, his body is tired. He is tired. I want to apologize to anyone we have not called personally. You know we love you all. Brandon's liver is failing. There is a blockage that we cannot do anything for. So it is only a matter of time. I just pray we can keep him comfortable until the day he goes to Heaven with the other Angels who fought just as hard as him. Please pray for a miracle either this turns around or he leaves us without pain. Thanks again for all your support, and please pray for our other friends fighting this horrible, horrible monster called NEUROBLASTOMA. I also want to say that once our journey ends, I will be starting the biggest crusade against pediatric cancer anyone has ever seen. I am pissed at this horrible beast. Anyone wanting to join me is more that welcome. I will update as I can. Love to you all,

Jamie

Friday, August 29, 2008 11:35 AM CDT

Hello all,

Well here goes with the long awaited update. Brandon is doing ok as far as we know. He has been having alot of pain and is on alot more morphine than before, but it is working for him. Now on the good side of things. Brandon went to camp Can-do and had a great time. He didn't miss me at all. Which broke my heart, but at the same time it was wonderful. I haven't seen him so happy in such a long time. He made a bunch of wonderful friends, and stole the hearts of many counselors. He also started school this week and loves his teacher. Shay and Shawna also started school and are having a great time, but its the begining of the year. Time will only tell how much they will love school. Things are tough here mentally and sometimes financially, but we are managing. So if anyone is interested in a jewelry show give me a call. I don't care where you live I will go anywhere. Also, if you are out of state, we could do a book show and you will receive alot of free jewelry. Well anyway, I just wanted to give some kind of update. Pray for the new trials to come available quickly for Brandon, there are some out there, but FDA needs to approve them. So pray for that. Also, pray for our new and old cancer friends and the ones we don't know about.

Jamie

Monday, June 30, 2008 8:49 PM CDT

Hello everyone,

First I want to apologize for not updating any sooner, I have been wondering how to do all of this. I mean to update, but everytime I do I don't know what to write. So here goes. Things have been crazy around here. First here is an update on Brandon. He still continues to take morphine around the clock. We have also added Neurontin, a medication for his nerves which cause pain in his legs. His class did an awesome job with their fundraiser Laps for Loose. They raised almost 4000 dollars. I also had the pleasure of speaking at the Jeff Musser Foundation Golf Tournament. I tried to prepare something, but found it was just much easier to wing it. Okay back to Brandon, he has a few lumps on his head, that we aren't sure what they are nothing shows up on the CT scan. Brandon is going to have his MIBG scan done at Hershey this time, hopefully it works for him. We have been on vacation for a week, we went to Washington DC and to Virginia. We had a very relaxing vacation.

When we got back Shay left for Creation, which is a big concert kinda like Woodstock, except for Christian bands, and no drugs like I said kinda like Woodstock. Then that Wednesday Shawna and Brandon left for the beach. They had a great time. Craig and I decided to take a trip of our own and we went to Atlantic City. No we cannot retire, but we did come home with almost all of the money we went down with. So we didn't do to bad.

I want all of you to come out to the Cancel Out Cancer Yardsale/kiddie carnival. It will be held at Chocolatetown Square beside First United Methodist Church. the Corner of Rt 422 and Chocolate Ave, Hershey. There is going to be alot of exciting things going on. Shay's youth group band is going to play. Many things for the kids. So come out a check it out On August 9th. Anyone who has any questions please call me at 717-283-8467. If you would like a space it is only 20 dollars and the proceeds go to the Four Diamonds Fund and the Make A Wish foundation.

Thank you all for checking in,

Love and prayers to you all

Jamie

Wednesday, April 16, 2008 7:02 AM CDT

Well where to begin, that is the question. Since my last update, we had our second round of chemo. Brandon's pain continues, we actually just updated his morphine dose. I could sit here and sugar coat everything, but why? I myself am in a state of depression. I know this is hard for everyone to read, but its the facts. Brandon continues to fight, but he is struggling everyday. He hasn't been to school in awhile, that is a battle I don't care to fight right now. So anyway, enough depressing stuff, here are some great things going on.

I have been working at Garden Spot Ribbon and Awards in the mornings before Shawna and Shay go to school, I almost feel normal now working outside the home. I still bring work home with me, and now I even take some to the hospital with me. Now that sounds like I am working very hard, but the job is very easy. Shawna and Shay had their Mini-Thon in March, the 3 schools together raised i think 19,000 dollars. There are only 2 more months of school left. Shawna continues to do well and has been accepted into full day vo-tech next year for nursing. She is so excited and I am so proud of her. Shay, well he is a totally different story when it comes to school. He is very intelligent, but does not apply himself. On the other hand his guitar playing is awesome. He has been practicing with some of his friends who are starting a band, so maybe someday I will be writing he is on tour. I am very proud of him too, he taught himself to play, and he plays very well. Matt, well I don't see him very often, so I really can't update on him. I do know he has moved in with a friend.

My jewelry business is going pretty well, but if anyone would like to have a show I would be more than happy to get the info to you.

Now to some fun events coming up. In June, there is going to be an Alex's Lemonade Stand in Hershey in honor of one of our great friends Emma Johnson. As soon as I get dates for it I will let you all know. We will once again be participating in the Make-A-Wish Convoy again this year. Provided Brandon's pain is undercontrol he will be in the truck with Uncle Willie. There is also a benefit yardsale called Cancel Out Cancer in August. Not only is it a yardsale, but it is also a kiddie Carnival.

Brandon's school is doing a fundraiser called Laps for Loose, they are walking during gym class, and recesses to raise money for our family and for the Four Diamonds Fund. His school is incredible. We also had one of Brandon's friends from school come over on Saturday to play. He ended up staying over night. They had a great time.

Well now that I have filled everyone's head with a vast amount of information, I am going to go. I need to clean.

Thanks for all your continued support.

Jamie

Tuesday, March 11, 2008 1:14 PM CDT

Well we are home. Thank God. I forgot how boring the hospital is. While we were there on Sunday, we got some visitors. Matt and Chrissy were there first. Then Aimee, Colt, and Auston came for a visit. And to our surprise, Cynde, John, Joshua, and Brandon's newest buddy Cheyne came for a visit. It was so nice. Shawna, Jeremy and Shay were our final visitors of the day. Monday Janelle, and Denise came over. Denise brought her grandchildren a 1 year old and an 8 week old. I have gotten over wanting to have a baby around again. Nathan is cute, but to have to do all that work again. No thank you.

Anyway, Brandon is doing better, he is eating some and drinking some. I am going to do my best to keep his pain under control. If we can't keep it under control orally we have some other options for pain control.

Well anyway, I better go starting to get a little tired. Laying around all day, for a few days makes you wanna do it all the time.

Love to you all,

jamie

Saturday, March 8, 2008 7:57 PM CST

Okay here is the latest and greatest and not so great.

THON was absolutely amazing. They raised 6.6 million dollars. We stayed till the end. I could not believe how much was raised. The Blue and White Society did an awesome job with our family once again. Somehow they got an autographed football for Brandon. It is signed by Anthony Morelli the quarterback. He was so surprised, we all were. I finally got the picture I have been trying to get since we have been going to THON it is a picture with all the kids with the nittney lion statue. It is so good. I will post it soon.

Shawna is doing her mini thon again this upcomming weekend. I am so proud of her for all her fundraising for the cause.

Now for some not so great news, our last MIBG scan was not good. Brandon's disease has progressed again. We have now started Irinotecan and Temador with a splash of Vincristine. This hopefully will do the trick. Brandon is also in alot of pain, not sure what from yet. As I sit at home and type this him and daddy are inpatient at Hershey. He is dehydrated and cannot eat from throat pain. Not sure if it is from chemo, cancer or the flu. Have to wait and see. We did see our new friend Cheyne Main before he was discharged from spending a week in there for chemo. I promise to post more as i find out. I have just been having a very rough few weeks. Emotional rollercoaster.

Bye for now
Jamie

Wednesday, February 13, 2008 10:49 AM CST

To all our well wishers,

We did not go to CHOP this week for scans because of the weather. We will be going next Wednesday and Thursday for his scan. So everyone please keep him in your prayers for clean scans. We also got some bad news from Philly, one of our favorite nurses Pat Brophy pasted away last night from a battle with cancer. Pat was an amazing nurse. She will be sadly missed. But she is in Heaven now taking care of all the Neuroblastoma children she took care of here on earth. So everyone please say an extra prayer for her family to have the strength to get through.

So nothing really more to report except THON is only 9 days away and we are very excited. Please send our dancers words of encouragement.

Jamie

Saturday, February 2, 2008 2:12 PM CST

Well, here is our long awaited update. Nothing new to really report. We have been doing the Hershey thing, and we go to Philadelphia for an MIBG scan on the 13th, so maybe we will have some more news then. Please write to our THON dancers giving them encouragement.

Talk to you soon!!

Jamie

Saturday, January 5, 2008 9:20 AM CST

Well here is the long awaited update. Last time i updated i guess was when we ended up in the hospital. Alot has happened since then. So I will begin with the results of Brandon's latest CT scan. They were great, best Christmas present I got this year. After the CT scan we went for counts to see if he could get his second round of chemo. That time was a no go which I was kinda happy about so we had no chance of spending Christmas in the hospital. Christmas was awesome. We had such a wonderful time watching the kids open up gifts that a wonderful group of people from Royer's Pharmacys had given them. So I want to send a special thank you to them. Especially Heather you are such a great person. I got my second greatest gift and that was having all 4 of my children under one roof at one time. I am so happy Matt and Chrissy are coming around again. I have missed them so much. So after Christmas we had to go to clinic for counts again to see if chemo was able to be gotten. Well that was a no go too. Which meant we got to spend New Years Eve at home too. I am not sure if that was good or not, I may have had one to many to drink. Who am I kidding I had alot too many to drink. Not something I do everyday so I am quite teh light weight. On a good note though, I didn't wake up with a hangover.

So the kids went back to school. Except for Brandon, he got chemo this week. So its back to giving shots, and praying for no fevers.

Now I need you all to say some special prayers for a new family I met the week before Christmas. The family are the Main's. They also have Neuroblastoma. Unfortunately they had to spend Christmas in the hospital. But watching them come into clinic was watching Brandon starting all over again. Cheyne is such a little trooper. Him and Brandon are gonna both play pro football when they grow up. Brandon will play for the Eagles of course, and Cheyne will be playing for the Steelers. Cynde and I will be sitting together watching our boys. People will stare but we wont care. Cheyne also has a big brother named Josh, who is feeling alittle left out. He is a basketball player, not sure who he's gonna play for, but when I find out I will let you all know.

My jewelry business is going well, but if anyone is interested in supporting me by having a party it would be greatly appreciated.

Well gotta get back to cleaning what fun.
Love and prayers to all,

Jamie

PS. Don't forget THON is coming up in February, support the Penn State canners. Its not beer money, they really are helping kids with cancer, They are my heros.

We are PENN STATE!!!!

Monday, December 3, 2007 1:46 PM CST

Well here is a long awaited update.

Brandon was admitted to the hospital on Friday for a fever of 107 He was delirious, didn't know who I was, he was saying crazy things. I was so scared. Before this happened I made a bet with his Dr. saying nothing will grow in his blood cultures, guess what I was right. All he needed was blood, fluids, and plateletts and he was fine. We had to stay till today, but I wanted to say thank you for all the extra prayers that were said for us.

Well I gotta go get some work done now.

Thanks Janelle and Denise for keeping me company Friday night, and Steph thank you for including Brandon on Ayania's page (sorry if spelled wrong).

Bye

Wednesday, November 28, 2007 1:14 PM CST

So here's the long awaited update.

Test results were not good. We found out his disease progressed yet again. We were told he has 2 spots on his arms and the spot on his skull. We found out last Friday we weren't told the whole truth. He also has disease in his legs and hips. So its back to Hershey for Topotecan/cytoxin chemo again. Back to long days long weeks, many blood tests and probably many transfusions. But as long as it does what it is suppose to do, we will keep doing it.

So as for Thanksgiving it was okay. Not as exciting as what it could have been had we heard clean scans, but I know we have to be thankful for as happy and energetic as Brandon is. Shawna, shay and Matt are doing great.

My business is going very well. I have had several parties, and they have been a huge success, Thanks to Aimee, Chrissy, and Cynthia. Without all things would not be going as well.

Well gotta go
Jamie

Tuesday, November 13, 2007 7:18 PM CST

Here's a quick update on what has been happening the last two weeks. So as for Brandon, we are having scans this week. I am praying for clean scans. He has been a real trooper through this whole thing. He had a bone marrow biopsy monday, today we had a CT scan, Bone Scan, and ECHO cardiogram. We also had a visit from Chris our THON buddy. Thank you Chris for making our long day seem not so long. You are an awesome person and someday we will surprise you at that "sub shop". Report cards came this weekend not doing so well. Groundings have been issued. All but Brandon, he has missed so much school, but continues to have a B,C average. Shawna, had a d in algebra, and shay well he had his usual grades. Like I said groundings have been issued. Well that is about all I have for now. Look for new additions to Brandon's page. Like THON events, Lunch for Life events.

Ohhh I almost forgot, the jewelry business is going great. I had my first party on Nov 5th and it went very well. I was so nervous, but when I messed up Kim was there to help me out. She is so great to me. I have another show this friday, saturday, helping Kim on Sunday, and then one of my friends from the cancer sucks club is having a party for me on Monday. I am so excited to see Cynthia again, but so nervous for her party she invited like 75 people. Will be really scared if they all come.

Well I will update when I get results for tests this week, look for it Thursday or Friday.

Love to you all,
Jamie

Tuesday, October 30, 2007 1:15 PM CDT

Hello everyone,
I was sitting here trying to decide what to write, and nothing really comes to mind. There really isn't alot to say right now. Brandon is taking his meds like a champ, hopefully it is doing what it is supposed to do and its kicking NB butt again. Shawna and Shay went to home coming this past weekend, they both looked so grown up.

I am still trying to start my own business, I hope everything works out with it. Kim is such a great person, I know she has all the faith in the world in me, I just need to have some of her confidence. I have some very good friends who are having parties for me. You know who you are. Thank you.

Well gotta go,

Please before I go, say an extra prayer for Brandon K. He is one of our NB friends. His family just found out he relapsed and they are going through some rough times right now. I so can feel their pain and it sucks. Say prayers for all our kids, they fight so hard.

Jamie

Thursday, October 25, 2007 7:10 AM CDT

I guess I will cut to the chase right away. We found out Brandon's bone marrow biopsy results he has 20 percent disease in his bone marrow. We were pretty much expecting that, so it wasn't that much of a shock. Anyway, enough dwelling on the negative. Here are some positive things that have happened.

On Sunday Brandon had a visit from his THON buddy Trevor. Trevor graduated last year, but still visits Brandon when he is on the east coast. Trevor and Brandon played football while I talked with another THON grad Aubrey. It was so great seeing them both again.

We started a new treatment at home, Brandon is tolerating well.

On Tuesday the 23 Shay turned 15. God I feel so old. Last Friday Brandon had dental work done. He had 5 teeth removed. Who knew radation could be so bad for a persons teeth. These things are not in the side effects. Anyway,
we have some fun things coming up this weekend.

Friday night Shay and Shawna are going to a concert yes they are going together if you know them you will know how much of a shock this is for all of us. Then on Saturday, Brandon and Shawna are gonna help Shawna's boyfriend's mom Ginger make cupcakes for the Fall Festival on Sunday. Later on Saturday, they have homecoming. Shawna is going with Jeremy, they have been dating for a few months now. Shay will be going to Homecoming too. He has a date with Brittany. Yes beleive it or not Shay has a date. There again I feel so old. So I will be taking plenty of pictures of both of them. Then on Sunday all three of them are going to the FAll Festival with Jeremy's family. I am so lucky Shawna is in with a great family who is not afraid to include all the kids. Can't say that about everybody.

Now for my news. I am starting my own business. I needed to find a job that would work around Brandon's schedule, and thanks to my great friend Kim Mease I found Premier Design. I am going to be a jewelry Lady. So if anyone would like to have a party and help me to be successful I would greatly appreciate it. Just send me an email if you are interested. This is a great way for getting some of your Christmas presents taken care of for free, yes I said FREE!!! Well enough excitment for now.

I have to go, but before I do, I would like everyone to say extra prayers not only for my family, but for the Brandon Koontz family. Brandon and his mom Wendy we met at the Ronald McDonald house in Philly. We have followed each others stories for a long time now, and they just got the news Brandon has relapsed. Please pray for them.

Jamie

Tuesday, October 9, 2007 11:56 AM CDT

We have made our decision on treatment. We are gonna try another trial at Childrens Hospital of Philly. It is called Zometa and Cytoxin. Brandon will get Zometa once a month by Iv, then the cytoxin is gonna be given orally everyday. Please pray this works for him. I have been in a funk for the last week. I am not sure when I will come out of it. I am sick of this whole thing. I am tired of everything. I am sorry to bring everyone down, but it's how i feel.

Jamie

Thursday, October 4, 2007 7:52 AM CDT

Hi all,
A recap of the last few weeks since my updating skills have not improved.

On Sept 16 we went to Dutch Wonderland. We had six tickets and only 3 people because Shawna and Shay went to the beach with their friends, so we took along Aunt Crystal, Uncle Keven and cousins Deven and Christopher. We had a great time. I forgot how small Dutch Wonderland really is. But we got to go on the roller coaster, water flume, and a few other rides. The kids had a wonderful time. It was also bring a book along day to donate to some for reading thing. There were book characters running around the park. The boys got their pictures taken with the Cat in the hat, the Bernstein bears, and Amelia Bedlia.

Brandon did his second round of ABT751 starting on the 19th. He tolerated it well. On the 22nd we went to Hershey Park. We took our kids Shawna, Shay, and Brandon we had one extra ticket so we took Shawna's boyfriend Jeremy along. Also his brother Chris and two of their other friends went. So instead of trying to feed everybody inside the park we just took sandwiches along and ate at the car. Some of the rides Brandon couldn't get on so Shay took him on the cars while Craig, Chris and I rode the Great Bear. I was scared out of my mind because this was my first ride on it. It was so scary, but I think the roller coaster of cancer life is scarier. We also went on the Canyon river rapids ride and got soaken wet. Good we had our swim suits on and had clothes to change into.

ON the 23 we all had big days planned. Craig and Brandon went to the Philadelphia Eagles game, they had an awesome time. The picture of Brandon and Swoop didn't happen by accident, Swoop actually went up to their seats for Brandon. It was so cool. He was so excited. He called me after the game and told me about Swoop after he let me know Daddy bought him a foam finger. That was the only thing he wanted from the game. As for Shawna and I we walked in the first annual Four Diamonds Four miles for the four diamonds walk a thon. We had a good time. We talked her boyfriend Jeremy into walking, Crystal and Noli (my sister in laws)walked with us. We also walked with our great friend Denise(the cleaning lady at hershey). Brnadons favorite nurse Holly was there we did the second lap with her, Dr. Comito, and Katrina. Katrina is the Childlife specialist on the 7th floor. There were some other four diamond families walking also. What was really cool about the walk was it was lead off by Mr. Millard, the founder of the four diamonds fund. He is no spring chicken and I think he did the four miles quicker then any of us.

So anyway I guess I should tell you the results of the MIBG scan done yesterday. We have done two rounds of ABT- 751 I am sad to report that it hasn't worked for us. The scan showed a tiny spot. So the doctors are trying to come up with another plan of action. I want to talk to our doctors at Hershey to see if they have any recommendations on which to do or something else I can bring to their attention. So i want to leave saying
CANCER SUCKS!!!!!! When I was sitting in clinic waiting to see Dr Maris for the second time their was a family sitting across from Brandon and I. I was holding my pain together pretty well until I see Melanie's mom crying and her dad trying to be strong for his wife and daughter. Not an easy task for him. They were told she doesn't have long here on earth with them. Please say extra prayers for their family. They are from Miami and are gonna be heading home soon. Pray for a safe trip for them, pray for a miracle. My heart breaks alittle more everytime I hear about one of my "kids" not doing well. I am not sure how much more of this I can take. Something has to be done. Please everyone start advocating for Pediatric Cancer, let the American Cancer Society know they need to share the money alittle more fairly that people donate. Pediatric cancer as a whole only gets about 2 percent of all donated money to be shared among all pediatric cancers. teh 2 percent then gets broken down by the diseases that have the most kids. I have many friends who's children have Leukemia so all of you please don't take offense to this I know your pain is as great as mine watching everything your baby has to go through, but the funds need to be shared more equally. Well I gotta go clean the house or something. I am so angry right now. I have to put on my brave face for my family.

Love to you all,

Jamie

Monday, September 10, 2007 11:45 AM CDT

I know its been a while since my last update. Brandon is on a new med. it is called ABT-751, he is tolerating it well, hopefully it is battling the little bit of cancer that is left in his body. Anyway, school has begun the kids are all doing great. Brandon is actually enjoying 3rd grade. He is doing so well. Shawna is enjoying her nursing classes, and Shay is doing well in 9th grade. He was a little scared his first day, but he got over that quickly.

I am trying to remember what all happened since my last update. We had a great labor day weekend. Oh I remember what happened we went to Emma's Lemonade Stand her parents had up in Hershey. We bought raffle tickets and put them in a few containers to win different things. We actually won something, a basket with Hershey's chocolate things, along with tickets to Dutch Wonderland and Hershey Park. We were so excited because we couldn't take the kids because we didn't have the money. So now the next two Saturdays better not rain, cause we finally have plans. Well I better go We are getting ready for THON season to begin.

Jamie

Wednesday, August 22, 2007 9:49 AM CDT

I know Aunt Kath I said I would update by Monday, but I have a daughter that won't let me on the computer.

So that said here goes. We had our Alex's Lemonade Stand on Saturday and raised 306 dollars and some change. Not as great as I hoped, but maybe its enough to find the cure. We found out that Brandon will be going on the ABT-751 because his liver function was to high to do the study for CEP-701. Fortunately he doesn't qualify for the ABT-751 study either. They can get the meds on a compassionate request. So that is what we will be doing. I am so excited to know that school will be starting in a few short days.

Now for some sad news. Brandon's friend Rikki from HMC died this morning. Rikki and Brandon would terrorize the nurses not only from Hershey but also from CHOP. I was so saddened to hear this news. I knew he was close to the end, but you never can really prepare to hear the words. I feel so bad for his mom and the rest of his family. Next question is how do I tell Brandon, Rikki had NB too, he followed Brandon through treatments after Brandon relapsed. They both did the same studies, with them about a month behind us. PLease everyone pray for his family, give them the strength they will need to cope every day. Well that's about all I have today.

Jamie

Wednesday, August 15, 2007 2:09 PM CDT

Hello everyone,

I am after many requests updating the webpage. Sorry for the delay, we had a very busy last two weeks. First I am sure everyone wants to hear the update on the scans. Well here goes CT scan CLEAN!!!! MIBG scan CLEAN!!!!! Bone marrow is down from 10-15 percent to 1-2 percent!!!!!!!!!!!!! This is excellent!!!!!!!!! We were so happy to hear this, but NED would have been better, but I guess this is as close as we are gonna get for now. Now the only problem with haveing everything so clean is now he we are having a hard time with follow up care. Dr. Maris offered us 1 study, CEP-701, the only problem with this is his liver function has to be normal and he is as of today "1 tick" away from normal. So we have to have a liver function test done on Monday hopefully it is normal then we can start this treatment next week. If not Dr. Maris is also working on getting another med for him called ABT-751, Brandon doesn't qualify for the study because he has no measurable disease, but he can get it on a compassioniate request. It just takes about a week to get through all the red tape. The hospital board, FDA, and insurance. What fun, thank God I don't have to do the leg work.

So that is the whole medical side of life. Now for the fun stuff. We went on a Disney Cruise thanks to the Marty Lyons Foundation and Greg at HMC. It was totally awesome. We had such a wonderful time. That is where the picture was taken.

Some more fun stuff thanks to Dr. Maris and Alex's Lemonade Stand and a wonderful donation, Brandon and his daddy will be going to the Eagles game on Sept 23. Not only do they have tickets to the game, but the tickets are for the club suite, where injured players sit, wives, and the president of the football team. They also get to go to a party before or after the game and VIP parking. So while I am walking for the 4 Diamonds they will be sitting at the game.

We will also be holding an Alex's Lemonade Stand at the Ephrata Sharp Shopper this Saturday the 18th. So if you get a chance stop by and show your support.

Can't wait till school starts less than 2 weeks.

Jamie

Sunday, August 5, 2007 9:40 PM CDT

Well, I know it has been along time since my last update. I don't have alot of time right now, so this will be short. Please everyone pray for clean scans this week. NED would be great!!! But we won't know till Wednesday. Shawna and Shay had a wonderful time on their vacations. Shawna at the beach was wonderful she had an awesome time, came home and she really has a great tan, she sucks!! just kidding. Shay went to Mexico and had the experience of his life. He loved it. He brought home some Mexican candy which Hershey doesn't have to worry about any competition there.

Anyway, just wanted to let you all know this is scan week, and we will find out the results on Wednesday. I also am writing this to let you know that our friend Layn and his family are struggling right now. They found out his stem cell transplant didn't do anything for him so please pray they can come up with a new treatment plan.

Love to you all,

Jamie

Sunday, July 22, 2007 8:54 PM CDT

Here is a quick update on what is going on with our family. First, Brandon needed red blood cells on THursday. This was the first transfusion he has had in about 3 weeks. So far his plateletts which are the hardest for him to recover have been holding their own. This week is going to be lonely for Brandon, Craig and I because Shay left for Mexico on Friday he will only be back on Saturday the 28th. He went with his youth group on a mission. He is in the youth band playing the lead guitar, so he will be putting on concerts for the folks down there. I am so proud of him. I hope he has a great time although I miss him very much. Also the same time Shay is gone, Shawna left for the beach with her friend's family. I hope she has a great time also.

Saturday the 28th we will be meeting our new THON chair at a Reading Phillies game. We are really excited about that. I hope they get along with Brandon as well as Trevor did. He is having a hard time thinking about new people at THON because he feels like he's betraying Trevor.

Anyway, that is about all for now. His next scans are Aug 6,7 and 8 then we will have the results on the 8th, I pray for only good news.

While you are praying here are a few kids who need extra prayers. Layn who had a stem cell transplant about 3 wks ago and is doing awesome. Ricky needs extra for sure. Ricky is Brandon's friend who he met at clinic. They both have Neuroblastoma. They are almost identical in treatment and attitude. Although Ricky only had 1 MIBG treatment done at CHOP, I found out that Ricky had to have his stem cell rescue done, which means he is not eligible for a second treatment. I pray one did the trick for him. Please everyone pray for him. Well thats all for now. Keep these two and all the other kids fighting in your prayers.

Love and prayers

Jamie

Wednesday, July 11, 2007 10:38 AM CDT

Hello everyone,
There is still no news on the MIBG done in June. We have to wait till August 1st for those results. Which really sucks. Brandon continues to do well, he is running around playing, riding bike being a normal 8 year old boy.

Now next on my agenda, Shawna is now permitted to drive. She passed her permit test, and is driving me around most places. Which is kinda nice, except, all the nerves and things.

Another thing, lately I have been feeling sorry for myself, wondering why this is happening to me and all that crap. Then I read a webpage, and relized how selfish I have been. I am not an angel parent, so what do I have to complain about. I am so lucky. I also have to remember that Brandon even though he is in active treatment, I am so lucky that he is not inpatient. I seen our new friends Layn, and his family, and I look at them seeing them in for a stem cell transplant remembering what we went through when we were in all the long nights seeing him in pain, and I pray they don't have to go through that. So I need to stop feeling sorry for my self and start living life again. Anyway enough about that.

Please pray for clean scans for Brandon, and keep Layn in your prayers.

Love you all,
Jamie

Saturday, June 30, 2007 6:39 PM CDT

Hello everyone,

There is not a whole lot going on right now. We are patiently waiting to find out when Brandon's next set of scans are scheduled to find out if the last MIBG treatment he got done its job.

On Wednesday he got a stem cell rescue, to help his counts stay up on their own. Hopefully in the next week they will graft and he will not need transfusions anymore.

ON a lighter note, Shawna will be turning 16 real soon next week as a matter of fact. On Thursday she will be going for her permit. Then I will have to go to walmart to buy some dye for my hair. Shay will be going to Mexico on a mission with his youth group at the end of July. He is really looking forward to that.

Well I gotta go for now.
Jamie

PS Please keep our new friend Layn in your prayers, he is getting a stem cell transplant next Friday. He is 2 years old and has Wilm's Tumor. Also, all the other kids who are still fighting!!

Wednesday, June 13, 2007 6:29 PM CDT

Hello Everyone,

Today is a day I am happy to say is Brandon's 8th birthday. 3 years ago i wasn't to sure we would see this day. I never knew how much I would appreciate a birthday. Anyway, we are here at CHOP yes that's where Brandon gets to spend his birthday. We are hoping to go home tomorrow. For their sake I hope we do. I am going stir crazy. I cannot beleive the differences between Hershey and here.


As far as Brandon's birthday, they have been great. He got some great presents a cake, chips, pretzels and punch. I blew up some gloves for balloons and he was very surprised when he woke up. His spirits are good since they took out the catheter. I know he is feeling good cause he is driving me crazy.

Well I finally have the chance to get a shower, so I am gonna go I will write more later

Keep praying for us!!

Thanks,
Jamie

Tuesday, May 29, 2007 12:30 AM CDT

Hello all,
Here is a quick update on what is going on here on the homefront.

First of all vacation was wonderful. We went to Monticello, took a ride on a ski lift, went to an indoor water park, Luray caverns and had a wonderful time.

Now the info you all have been waiting for. Brandon's Bone marrow test results were minimal disease, CT scan Negative, and the MIBG scan was ta da Negative too. We are so happy. We don't wanna get to excited, but it is possible after the next MIBG therapy he may possibly go into NED again. I pray that is the case, but I don't wanna get my hopes up to high. Well I gotta go for now. I will post a pic from vacation tomorrow.

Jamie

Tuesday, May 8, 2007 8:54 AM CDT

This will be short because we are getting to go on a vacation for the first time in 2 years. Brandon continues to do well. Hopefully when we get back from vacation his tests will say the same. Please pray hard for him to have clean scans on the 21, 22, 23 of May.

Brandon is now a baseball player. I will post pictures of him soon.

Our vacation is in Virginia with Craig's family. His whole family.

WEll gotta go get ready to go now.

Love to you all.

Jamie

Tuesday, April 24, 2007 11:27 PM CDT

Hello all,
We had an awesome weekend. We went up to Penn State for the Blue and White game. Hung out with Brandon's THON friend Trevor, went to the little carnival they had there, and I had a glimpse of what college is gonna be like for my kids (boy does that scare me!!). I seen so many kids I guess they were at least 21 considering they were carrying cases of beer around, I hope mine aren't gonna do that. Yeah right thats what college is for. Anyway we had a great time. On Sunday Brandon went bowling with his friend Kyle Z from school. He had a great time. Kyle is such a good friend to Brandon. When Brandon isn't in school for a couple of days Kyle will call to check on him, and to make sure he is ok. Kyle will never know how much that means to me, and his parents are absolutely wonderful. They are very special people.

I still don't know how the MIBG treatment went, I am feeling pretty good about it, but I don't wanna get my hopes up too high. I have been having a really rough couple of weeks and I don't know why. I should not be feeling sorry for myself, because so many of my friends have lost their babies. I don't know what's wrong, maybe it's time to up my meds. Or just need a vacation from all the doctors and hospitals. I can't wait till May we will finally be getting just that. But the week after vacation, we will be getting scans done to see how well the MIBG therapy worked, and to find out if we are gonna do it again.

Please everyone keep little Penelope London in your prayers. She is such a strong little girl, but in so much pain from the freakin' disease. I so hate this crap.

Love to all,
Jamie

PS. Aimee, thank you for checking on Brandon. It means so much to me. My cancer family is so amazing . You all are wonderful. I gotta go!!!

Jamie

Friday, April 13, 2007 9:09 AM CDT

HI all,
Sorry for the lateness of this entry. Brandon came home from CHOP on Thursday 4/5. I was so very proud of him, he drank so much so he could get out of there. Before we went in the Four Diamonds Fund sponsored a night at the Hershey Bears game. So we went and he loved it. It was a great game. With the Bears winning by 1 point.

Anyway I guess everyone is wondering how the MIBG went. Well as far as I know everything is going well. There has been some reduction in swelling which is great. I pray this works for him.

We are getting to do one of the things he has wanted to do for a long time. We are going to a Penn State football game next weekend. It is the Blue and White game, which means Penn State plays Penn State, so I guess he will get to not only see a game, but see his team win!!! He's not the only one excited about it, I am pretty excited myself.

Anyway, this entry I had a special little piece wrote up for people who like to tell me what I should do if someone fundraises for us. All I wanna say is the person who said this and I am sure you know who you are, I believe you owe some people apologies, because when it was benefiting you and people around you, I didn't hear you saying a word then. So DON'T START NOW. Also, if you wanna tell people how Brandon is, maybe you should check with me before you tell people he is at the end of his life. DON'T BELEIVE WHAT OTHERS SAY, IF YOU WANNA HAVE THE FACTS CALL ME!!!!

Now that I have that off my chest, I have gotten a great shock yesterday. I checked my email and found out one of our NB family is flying high with Jesus now. Kendall was in pain for a while, but he was holding his own, and Wednesday he suddenly went with Jesus. Kendall is the reason I didn't post what I was gonna post. Because with his passing I realized there is no point in going into as much detail as I was gonna go. It was not worth my time to write it and not worth your time to read it. So I wanna say thank you to KENDALL. Please pray for his family to have the strength to do what is next for them. Kendall is a 4 year old twin, his brother's name is Zachery, his mom is Aimee, and his dad is Neil.
Also, I would like if everyone could pray for a special little girl named Penelope London. Penelope is in alot of pain too. Her family is trying to keep her comfortable. It is families like these and the Angel parents and their families that make me realize how lucky we are. We are fighting the fight, but we are still fighting. Brandon is still with us. He is still running around like a crazy man, going to school, being a little boy. And on that I will let you all go.

Please remember my special "family" my cancer family, pray for them. All of them, the NEDs, the Warriors, and the Angels because you never know what life will hold. Live everyday.

Jamie

Tuesday, April 3, 2007 7:07 PM CDT

Hello to all,
As most of you already know the Fenretinide treatment we tried failed miseriably. Brandon's disease has progressed. We are currently at CHOP having an MIBG treatment done. I cannot go into to much detail, because I have only been released from room arrest for a few minutes to get a shower. I am lucky he gives me that much. Please pray this works for him. He is so brave. Sometimes it amazes me that he is only 7 years old. He has so much more strength than I ever would. Well better find a shower in this place. I will update more when I get home. Hopefully he will allow me to take some pictures of him so I can update the page.

Love to all,
Jamie

PS please remember all of the other cancer families, and pray hard for them all!!

Monday, March 26, 2007 8:57 AM CDT

Hi everyone,
We are down at CHOP getting ready for a bone marrow biopsy. Brandon just had a fit about how hes tired of doing this whole thing, sick of docs, tests, meds, everything. He knows if he stops everything he will die, but he doesn't care. I know I need to be strong for him, but it isn't easy. Brandon is not the average 7 year old. He is alot smarter than he should be. He knows entirely too much about this horrible disease. I hate this disease, my son should not be thinking about dying, he should be thinking about playing and having fun.

Well enough about that, he is gonna be fine, he just gets in his moods. I am in one myself, I just read about a brave warrior princess Penelope London, she just started hospice care, which means her journey is soon over. Pray for her to have little pain, and be able to enjoy the rest of her journey. She will soon be with our other angels, catching butterflies and dragonflies. Penelope's dad John, has contributed so much to Neuroblastoma research, and has helped so many parents including myself. I pray for them for the strength they will need soon.

Shawna had her mini-thon, they raised over 23,000 dollars. I am so proud of all of them. They did a great job. Please pray for all of the kids still fighting here are a few Brandon L., Penelope, Kendall, and so many others.

Love to you all, I will update Wednesday when I have some test results.

Jamie

Monday, March 5, 2007 1:15 PM CST

Things are going ok. We will be starting round two of Fenretinide on Wednesday. Not alot of things have been going on. Craig started school today. He is going for his CDL lisence. He also had an oreination with Amtrak a couple of weeks ago. He had to take a bunch of tests to see if he qualified for them, and he has passed. So Amtrak is a possibility for him too.

Shawna's mini-thon kickoff was great. She set a goal on the amount of money she wants to raise. If she reaches it I will be so proud of her. I'm proud of her anyway. Her mini-thon is March 24th at Gardenspot high school. If you have the time come out and cheer her on.

Well gotta go for now.

Update soon to come.

Jamie

Friday, February 23, 2007 10:57 AM CST

HI all,
Well THON was wonderful. We had so much fun. And the amount of money the kids raised was amazing. They raised a million more than last year. 5.2 million dollars. I couldn't beleive it. We unfortunately had to come home early, because of illnesses, but we watched it on the webcam. It was amazing to see. Brandon has finished up his first round of Fenretinide, he has to go for blood work up at Hershey on Monday, we are so excited, it's like going home for us. Then we are off for the rest of the week until March 7th, then its back to CHOP. And the next round of Fenretinide,, which shouldn't be too bad because we can mix it in applesauce instead of slim fast.

We have been looking into train tickets. Driving the Skullkill every day scares the crap outta me. Prices aren't to bad, and we can catch a shuttle from station to hospital and back. Well I really don't have to much more to add. Shawna will be doing the Mini-Thon at her school again. I am actually speaking at the kickoff assembly at her school. Brandon is going to tell the kids "Cancer Sucks" Well gotta go.

Jamie

PS. Please pray extra hard for Penelope and Kendall, two very special children to me. Also pray for a cure.

Jamie

Friday, February 16, 2007 10:13 AM CST

We are going to THON! if you wanna see us go to www.thon.org and look for the web cam. yessss we know youre jelouss!! :D



Updated by Shawna

Wednesday, February 14, 2007 2:00 PM CST

Happy Valentine's Day,
I am not really to cheerful right now, but I will get into that later.

We got the results of Brandon's tests back yesterday. They were basically the same as the last ones done at Hershey. Which is good, it means no progression. So we started the new chemo yesterday. It was such a long day at the hospital. We started at 8:15 am and left at 5:30 pm. It was such great fun. Truthfully it wasn't that bad. One of Brandon's first THON dancers, Chris came to visit while we were there. We did lunch at the famous CHOP McDonalds, then when we finished lunch we went back to the Wood Ctr and Brandon and Chris played with Jenga blocks, building towers, using them like dominos. Brandon had such a good time. I will post the picture of the soda tower soon. Driving home from Philly was fun last night. It did nothing but sleet all the way home. But enough about me.

I have a two special people who need your prayers extra hard right now. Penelope London and Kendall(don't know his last name). Both of them are not doing great, they are holding their own, but their parents need to make very tough decisions. I am really bummed. I hate this horrible disease. It SUCKS!!!!!!!!!! I wish God would let a cure be found. I know He knows what needs to be done, why doesn't he give teh docs the wisdom or just tell them what to do to make our babies better, instead of making them suffer so much. We have been doing this for almost 3 years now, and so many of our children have gone. I am tired of this. God needs to understand we need our babies too. Okay enough I could write more, but it would just turn into an argument against the person who holds my son's and the rest of the NB kids fate in his hand. I really don't think I should piss him off.

Well gotta go make Brandon so Hot Cocoa. Get ready for work, and start getting things ready for THON.

THON is in two days and I cannot wait. Yeah there will be a bunch of bald headed kids there, but they will be able to be normal kids without everyone staring at them or making them feel weird. It will be 46 hrs of pure fun, and it hasn't come at a better time. I will be praying for Penelope and Kendall while I'm there along with all the other kids. But THON is FOR THE KIDS!!!!!!

MANY HEARTS, ONE HOME

Love to all,

Jamie

Wednesday, February 7, 2007 2:51 PM CST

STill in Philly. Today was horrible, actually it started last night. Brandon had to drink contrast last night for his CT scan today. We were up til 1am drinking. Today we had to be at CT scan at 11am. So we went to the hospital, to get accessed. And made it to CT by 10:30am which is a record first for me. Usually I am late. So we sat there till about 12 then they finally took him in for his scan. He had to drink 2 glasses of water, which made him so happy not!! We got the CT over with and still needed the MIBG injection. Remember Brandon could not eat since last night. So usually MIBG injections take about 5 minutes. Not here it was about an hour and a half. By this time Brandon was in such a wonderful mood. He was yelling at me, and I think if he was a little braver he would have yelled at anyone who looked at him the wrong way. Finally got the MIBG injection found out what time we have to be there tomorrow and could leave. Thank God they have a McDonalds right here in the hospital and it just so happened to be on the first floor right below us. So any of you who know how much Brandon doesn't eat, this boy ate a Big Mac and a 6 piece chicken nuggets with honey mustard sauce.

We still haven't heard anything on his bone marrow test from Monday. Keeping our fingers crossed, as long as everything goes ok, we will be starting the Fenretinide next Tuesday. Well gotta go for now.

Jamie
Please keep Penelope London in your prayers she is in such pain.

Tuesday, February 6, 2007 6:49 PM CST

Hi all,
Writing from Philadelphia. We are here for the next two days for testing. Tomorrow Brandon is scheduled for a CT scan and also an MIBG injection. Then on Thursday he will have an MIBG scan. Then it will be homeward bound. Brandon is adjusting to his new surroundings very easily, I on the other hand miss Hershey very much. I thought Hershey was a big hospital, CHOP is so overwhelming. I feel very intimidated here. I guess I just need to get the big city attitude.

Yesterday Brandon had a Bone Marrow Biopsy done. We didn't hear any of the results of that yet, maybe some answers tomorrow. Well I guess I better go, Brandon is kinda restless, so we have to go exploring again.

Love to you all,

Jamie

Oh PS. Please say a prayer for a friend of mine's little Penelope London, shes in alot of pain.

Friday, February 2, 2007 8:13 PM CST

As promised in my last entry here is what we found out at CHOP. We are going to start a new treatment with Dr. Maris. It will be an oral treatment we will be doing at home. So that means more school for Brandon. He's really excited about that. HE is also excited because he gets to go to Philadelphia and Hershey. We will be working with both hospitals for his new treatment.

Remember THON is coming up. Donate to the link above. Do it for Brandon.

Jamie

Sunday, January 28, 2007 6:18 PM CST

I know it has been along time since my last update. Alot hasn't changed. We are still doing the Topo/cyctox chemo. Which has been only keeping the cancer from spreading. It is not getting it better. I am taking him down to CHOP on Wednesday to talk to Dr. Maris about some new treatment options. It has been a hard decision to even consider another treatment let alone another hospital. Sometimes I am not sure if I'm making the right decision for Brandon, or if its for me. Guess I am just being selfish or crazy or I don't know what I'm feeling.

Anyway, we have some excitment coming up soon. It is time for THON!!! We cannot wait to go to THON, and see our Penn State friends again. THON weekend is probably going to be the 2nd time the past year I haven't had to think about cancer or make any decisions about treatment.

I will let you all know what happens at CHOP. And I want to Thank you Kim for going with me. This is a journey I know I would never have made this far without you. I love you Kim. You will never know how much your friendship means to me. I wish we could have met under different circumstances, but once again Thank you.

Jamie

Sunday, January 28, 2007 6:18 PM CST

I know it has been along time since my last update. Alot hasn't changed. We are still doing the Topo/cyctox chemo. Which has been only keeping the cancer from spreading. It is not getting it better. I am taking him down to CHOP on Wednesday to talk to Dr. Maris about some new treatment options. It has been a hard decision to even consider another treatment let alone another hospital. Sometimes I am not sure if I'm making the right decision for Brandon, or if its for me. Guess I am just being selfish or crazy or I don't know what I'm feeling.

Anyway, we have some excitment coming up soon. It is time for THON!!! We cannot wait to go to THON, and see our Penn State friends again. THON weekend is probably going to be the 2nd time the past year I haven't had to think about cancer or make any decisions about treatment.

I will let you all know what happens at CHOP. And I want to Thank you Kim for going with me. This is a journey I know I would never have made this far without you. I love you Kim. You will never know how much your friendship means to me. I wish we could have met under different circumstances, but once again Thank you.

Jamie

Saturday, December 30, 2006 5:47 PM CST

Hi Everyone,
I know it has been a long time since my last update. NOt a whole lot has changed. We had Brandon's CAT and MIBG scans done, and the results weren't much to write home about. They told us there was a little to no change. So I guess we just forge on with the Topo/cytoxin chemo for awhile yet. I actually have been doing some reseach looking for other options. I am going to have a talk with one of the docs this week. Brandon has chemo comming up this week, so there will be plenty of time to talk to them.

Craig and I went to Brandon's school to help him make a gingerbread house. He did a great job. We also got to help our nephew Chris, which was cool. They both did great. I will get new pictures up here soon.

Brandon gave his dancers for THON a tour of the hospital and had an awesome time. He got to hang out for a couple of hours with his buddy Trevor. Brandon was in heaven.

Christmas was wonderful. We spoiled the kids once again. I think we are trying to buy everything we can, because the one thing we wanna buy we can't. A Cure. I was pretty depressed this year. I was feeling guilty, sad, and very I don't know just depressed. I was feeling guilty because alot of my friends are spending Christmas without their babies with them, and I have mine. I know I should be greatful and believe me I am, but I am so sick of this f@#$$@# disease controling every aspect of my life. No matter what happens, this disease will always control me. Well I guess that is enough depression for one day.

We received a gift from our team at THON. It is a chain. We take off a link everyday till THON. It was so cool, I think it is my second favorite gift this year. My first was the engagement ring Craig gave me. I am so happy. He is my best friend, and if it wasn't for him I would have never made it this far in this battle.

Also I want to say thank you to whoever gave the gift to my mom, and I want to Thank the staff, students, Mr. Parsons and student council for thier wonderful gift. I will be forever grateful to you.

Well gotta go for now,

Jamie

Wednesday, November 15, 2006 3:24 PM CST

Hi,
The guys went hunting this past weekend and had a great time. Brandon told me he shot 2 turkeys with one shot. Boy he is good. Good at making up stories. Tehy did have a very good time though. Shawna and I spent the weekend together. We went and mutalated ourselves. We both got our cartilage pierced together. We chickened out for a while and walked around Walmart making up excuses why we didnt do it instead of admitting we are both just chicken. Then we fianlly did it. Boy now I know why i was chicken. It hurts. But I am glad I did it. It is something Shawna and I will have together forever.

Anyway we got the results of the bone marrow biopsy back yesterday. They weren't as good as I was hoping. I was hoping for it's all gone no more treatments, but I was wrong once again. So now we are still doing treatments, and blood transfusions. But we are still fighting. I was so depressed yesterday, I was at work and just cried while i was cleaning. I know there are so many families going through this it just sucks, i hate this disease. There needs to be a cure found soon.

I am going to be posting a giving tree number in the next day or so. The giving tree is a place to donate money to the Neuroblastoma research fund. We need this money.

Also this upcoming weekend we are going to state college for a carnival with our thon group. The kids are looking so forward to it. I cant wait either.

Well gotta get ready for work now

Jamie

Saturday, November 4, 2006 11:37 AM CST

Well alot has happened over the last few weeks. As you can see school pictures have been taken, conferences next week. Craig had his last day of work ( he is retired) haha fat chance he is currently looking for work. Hunting season has begun so many weekends I have semi to myself. Craig's brother Scott got married. No I still haven't convinced Craig to marry me. But on a good note we have been looking at rings, but considering his current employment status that's not gonna happen either.

Bet I had you all fooled with the "normal" life update. We are currently on a break from chemo. Just had the past week off. What a break. We go in Tuesday for a bone marrow biopsy then Chemo Wed, THurs, Friday. Then all the boys are going to the cabin for a hunting excursion. Just me and Shawna at home. I think we will rent some chick flicks and hang out.

We are looking into a new study, but may have to travel to Vermont for atleast the first round. When I find out more about this I will let you all know.

Brandon actually got us the week off by bribing his doctor with a bag of skittles. Just kidding he did bribe the doc, but I was already planning on the break. Well thats about it for now on Brandon.

Please everyone pray for our friend Sean Gelzer Jr. He is a 3 year old boy with AML a form of luekemia. Currently he is battling Graft vs. Host Disease. Which is very scary for his parents and him. pray for him, He has overcome so many odds against him and now for this to happen him and his parents really need your prayers.

Thanks to all of you.

Jamie

Monday, October 23, 2006 10:45 AM CDT

NOt a whole lot to add today. Brandon received plateletts last week again, and we went up for counts today to get a phone call we have to go back tomorrow for more plateletts. I wish there was something to give him for his plateletts. I am not sure what our plans are for the next round of chemo. Have to talk to the docs. Hopefully give him an extra week off. Maybe that will help the plateletts situation.

On a happier note today Shay is 14. It's his birthday. HAPPY BIRTHDAY SHAY!!!!!

well gotta go
Jamie

Tuesday, October 17, 2006 2:35 PM CDT

I know it has been awhile since my last update. There isn't really alot to report on brandon. He is haveing a hard time recovering his platelets after chemo. But we are managing.

I have just found out about a special boy I met at HMC Devin Deim. Devin has lost his battle, he was taken to Heaven a few days ago. Please keep his family in your prayers.

I am not sure what else to write right now, because I am pretty depressed right now.

Love to you all,

Jamie

Tuesday, September 26, 2006 8:26 AM CDT

Hello all,

Well I know it has been a while since my last update once again. I really haven't had a lot to report. Brandon is continuing with the chemo he has been getting. He is doing great in school. All the kids are doing great in school. I really am enjoying the days spent at home alone. I love silence.

Although today I will be spending part of the day at my sister's house using her scanner. Mine sucks. Then later I will be bathing our two dogs, who for some reason like to play with skunks. Yes they got sprayed last night. So they spent the night outside and today they are getting a nice bath with tomato juice. I am sure they as I will enjoy this.

I have been in a support group for Neuroblastoma pretty much since this all began, I sometimes dread going to check my email because of all the children being taken to Heaven entirely too soon. But I continue to check on them. My heart breaks alot everytime I read about one of the warriors gaining their angel wings. But then I also see the ones who continue the fight like Brandon and the ones in NED status.

Well gotta go

Jamie

Wednesday, August 30, 2006 12:03 AM CDT

Wow the month of August flew bye. Sorry for the lack of updates, but there really wasn't a whole lot to say. Now there is.

The kids are all back in school. Including Brandon, when he's not going to the hospital for chemo. He was not to happy when Dr. Ungar gave the okay for him to go. But I think it is best for him to try to live as normally as possible. And if that means me having to spend the days alone well so be it(actually i love it.) Second grade for him. Wow seems like only yesterday he was born.

We were hoping to start a vaccine study at HMC soon, but our plan has fell through. Let it to our boy to have strange tumor cells. They have not done what the doctors say they needed to do, so that means he does not qualify for the study. Which means back to big decision making for me and Craig. Relapse really sucks because all the decisions are on us. Unlike when he was first diagnosed and all the decisions were made for us. All we had to do was sign on the dotted line. Now its all up to us.

Anyway, its soon time for THON fundraising, we are so looking forward to seeing our friends from THON again. We miss them greatly. I hope our last year's guide makes it to THON this year because it would not be the same without Rachel.

I am going to start doing some fundraising along with a great friend of mine Tracy Musser, for a family I have know for along time. Please keep looking for updates. Now that I have some spare time I am going to do my best to update even on little things.

Love to you all,

Jamie

Monday, July 24, 2006 10:38 AM CDT

It has been awhile since my last update. Brandon had a round of chemo at the beginning of the month. Now we are waiting for his counts to come up so we can do the next round of chemo. So anyway, we got a pool for the backyard so Brandon spends all his time there when we are not running back and forth to the hospital. It's not a big pool, but he loves it.

Shawna turned 15 this month. She is growing up so quickly. She found herself a car and a job. She got herself a Mustang. It is a 1986 and it also needs some work, but thats okay because she has a year til she can drive anyway. Shay is still doing well. He is having a boring summer, but with everything going on, making plans to far ahead is kinda impossible. We do have a few things up our sleeves that the kids don't know about.

We pulled out one of the things last Thursday. We took Brandon and Shay to the Cinderella/Poison concert at Hershey. It felt so weird driving up there and turning before we got to the hospital. It was a great concert. And the kids had a blast.

Shawna also got a job working with me at night. She like i said before is growing up to quickly. Well gotta go now, have to get some work done before i have to go to work. Thanks for all the prayers and thoughts

Jamie

Tuesday, June 27, 2006 3:41 PM CDT

Well I have some good news. We had a CT scan done on Thursday the 22nd. And we were told there is some improvement. It isn't as great of an improvement as I would have liked, but it is something. We are gonna continue with the chemo that we are doing now until it stops working or we don't need it anymore. Then I am pretty sure we will be getting into a clinical trial. Not sure if it will be at Hershey or at CHOP. More then likely we will be staying with Hershey. But you can never tell.

I also had an experience this weekend that i would like to share. As you all know i was attending Berks Technical Institute to get a Medical Assistants degree, and had to take a leave when Brandon relapsed. When the Student council and the allied health club found out about our situation, they did some fundraising. In one day with a bake sale and a spagetti dinner they raised over 800 dollars. They had a student picinic this past weekend and had me come down and bring Brandon along. They presented us with the money and also told me that what ever they raise at this picnic will also be coming to our family. I was pretty much shocked, because all the people didn't even know who i was until brandon got sick. It never ceases to amaze me at how total strangers will come to a persons aid when they really have no real reason too, except the fact that they are truely good people. I am so proud to know all of them. Well its time to go to work now so I better wrap this up.

Love to you all,
Jamie

PS keep praying for Jenn, i also added her website at the end of Brandon's so check it out and show her family support.

Friday, June 16, 2006 10:08 AM CDT

HI all,
Brandon is also very proud he is now a big 7 year old. His birthday was on Tuesday the 13th. To think he started this when he was 4 and now hes 7. He is trying to kick this beasts butt.

Brandon's chemo went very well this past week. We have been very busy, that's why no update lately. We had our pig roast and it was fun. Shawna decided she wants to do it next year for her senior project. She wants to find a family to do it for, and hopefully there are no new families so she will donate the money for NB research. I think we have made our decision on the next treatment for Brandon. More on that later.

Well Matt made it to graduation. I thought I would cry, but the very first diploma given out was to a boy who died this past year. His mom accepted his diploma, that is when i cried. When it was Matt's turn i was so happy for him. I didn't shed one tear for him. I was just so happy he was here to accept his diploma. Shawna is now a big sophmore, she is so excited. Shay will be going to the 8th grade he was sweating though not sure if he would pass all his classes. And Brandon well he is now a 2nd grader. He was so excited. I will be posting new pictures soon. Have to finish pulling weeds now so dont really have time for new pics right now. But they are coming soon. I promise.

We are watching brandon very closely right now cause he has no white count, so everything is touch and go for now. But he is going strong.

Please everyone pray for our new friend Jenn Bailey, she is struggling from her last round of chemo. Please pray for strength for her. She is such a lovely girl. I know her mom is very worried about her. We talked in clinic last week. I am worried for her too. Please pray for all the kids trying to beat this horrible disease. I hate this disease.

Well gotta go, love to you all.

Jamie

Wednesday, June 7, 2006 1:15 PM CDT

2nd day of chemo and all is well. I don't wanna jinx us so i will not dwell on that. So anyway, we have some major decisions to make. I don't think it is very fair, that we as parents need to make a decision. We need to pick the right treatment to follow next. It really sucks to have to make this decision. It is kinda like playing russian ruelette with your childs life. I don't think it is fair for any parent to have to make a decision like this. It really sucks. So enough of this crybabying I am going to stop now, before i depress you all anymore.
jamie

Monday, June 5, 2006 10:51 AM CDT

HI everyone,
Just wanted to stop in and let everyone know what is going on all. We were supposed to get chemo this week, but Brandon's platelett count wasn't high enough. So they told us we won't be able to get it today. So while i was writing this his doctor called. We will be going in tomorrow for the chemo but only 4 days. So back to Hershey tomorrow.

As June wears on there are a couple great things happening: One is Brandon is going to turn 7 on the 13th. My oldest son Matt will be graduating high school on Friday the 9th. I am so excited for him, and so very proud of him. After graduation i will be putting a picture of him in his cap and gown. And the second annual pig roast is going to be this saturday the 10th. We are pretty excited about it, there have been a few backsets, but from what i am hearing it will be a pretty good time. So if you want more info call me or email me.

The school year is rapidly coming to an end. Shawna and Shay are awaiting carefree summer days, boy do they have another thing coming. I have all kinds of little projects in store for them. Just kidding, they will have carefree days. I am not too sure what is going on with my school right now. I am not sure how long i can be on leave before they drop me. I was hoping to be able to finish, but I am not to sure about it. Well its time to go and get some work done around here. Love to you all, and remember, pray for all the warriors out there fighting this horrible beast.

Jamie

Friday, May 26, 2006 12:55 AM CDT

HI everyone,
We busted out of the hospital on Wednesday. Dr. P wasn't sure he wanted to let us go cause Brandon's counts weren't high enough. But with some begging and alot of confidence in us he finally left us go. We had to go for counts today, all is great. Brandon's white count is still only 1.6, but his ANC is up to 800. Only a few more days of GCSF shots left to go. Then its back to chemo again. Hopefully he doesnt get any fevers with the next go around.

While we were waiting for our counts to come back we went up to 7west, because i forgot some stuff when we were leaving on Wed. I beleive it was fate that i forgot my things, cause i got the pleasure of meeting another girl with Neuroblastoma. Her name is Jen Bailey. I was talking to her mom for a very long time. This is only the 4th person i have met at HMC with NB. Unfortunately 1 Angel Michaela is watching over Brandon, Duncan is doing well and Jared is doing well. Jen has relapsed before she could even get her stem cell transplant done. Please everyone when you are praying for Brandon and the rest of the kids, say an extra one for Jen, she is only sixteen and wants so bad to drive. I hope she gets that wish.

Anyway school is soon over and i have many things i need to get done around here since we were in the hospital for a week. So i best go. As far as this update you can thank Denise our wonder housekeeper and friend at HMC. When we were admitted i was upset and crying, and she cheered me up by telling me about her new mops. Denise i don't know how we would get through being admitted without you. Like i said you are our friend.

well gotta go,
Jamie

Monday, May 22, 2006 5:21 PM CDT

Hi everyone,
I finally got a chance to update. We were admitted on Thursday for a fever. Brandon has been getting antibiotics since then. He is doing so much better. He is running around here having a good time. We should get out of here really soon. Hopefully in the next few days.

Well gotta go find him now. Love to you all and thanks for the prayers.

Jamie

Wednesday, May 17, 2006 2:29 PM CDT

HI all,
I am here to update now that i have a brief moment. Brandon came through the first round of chemo like a champ. He had some minor diarrhea from it and also threw up a couple of times. Not to bad. He has to get GCSF shots for the next couple of days till his white count starts going up. Monday we were at a 1.6 so hopefully when we go up tomorrow to have his counts checked again that number goes up. He lets me give him his shots while he holds his shawna's hand. I dont know what i would do without her. Shay and Craig went on a vacation with craigs family down to virginia. They are having a great time. We stayed home because of his white count. ON sunday we were in the Mother's Day Make A Wish convoy. There were 462 trucks this year. It is a new worlds record. I was so proud of brandon he was waving to the crowd sitting by himself. Last year he had to sit on my lap and he fell asleep. Well i gotta get his shot ready so I will have to go for now. Thanks for all the prayers.

jamie

Wednesday, April 26, 2006 1:29 PM CDT

Yesterday we got the final word on Brandon if he relapsed or not, He did. God I hate this disease. It not only affects Brandons body, but puts the rest of us on a emotional rollercoaster. One minute i am laughing having a good time, the next i am trying not to cry. I can talk to one person just fine and the next i am so freakin angry and sorry for the next person. This is worse than last time, last time we were diagnosed and the first round of treatment was done before i realized what happened. Now this is taking forever to get things going. Well enough depression for one day, i am sure there will be plenty more coming soon.

As far as brandon goes he is just great running around playing and having a great time. The Shay and Shawna are doing great too.

Well i am gonna go.

Jamie

Wednesday, April 19, 2006 10:20 PM CDT

Thursday the 20th we go in for a biopsy of the node in brandons groin, and also a bone marrow biopsy. I should know preliminary results tomorrow. God I pray they are done. Please everyone pray for him.

Thanks,

Jamie

Tuesday, April 11, 2006 8:55 AM CDT

Yesterday was a day i would rather forget then have to write this now. The docs seem to think brandon has relapsed. We will have confirmation soon, but it doesnt look to great. I really dont know what to say at this time except please pray they are wrong!!!!!

Sunday, April 9, 2006 10:19 PM CDT

Hi everyone,
Today marks the 2nd year since we joined the elite group of Neuroblastoma members. HAHA I hate this crap. I have been in such a foul mood all day. Last night i did what i did 2 years ago i cried myself to sleep. Today wasnt much better. I think i need to upgrade the meds. Just kidding, no im not. anyway, wow how things can change with the blink of an eye. Okay enough depression. I am here to update you all on the kids. Shawna continues to do well, her school raised 9304.51 dollars for the Four Diamonds Fund at their mini thon. Her grades in school are still very strong. She is going to start her senior project very soon and she is only a freshman. I guess she isnt too much like me cause i am about the biggest procrastinator i know. Shay he is skateboarding like crazy. He takes brandon with him alot. They are finally getting along. Shays report card wasnt all that great, but what grades he did get were a definite improvement since mid marking period. Brandon's report card only comes home tomorrow. But i think he will do just fine. He brings home papers with stars on them all the time. As for my grades I had 4 A's and 3 B's not to shabby for being out of school for 18 years. Matt will be graduating in less then 2 months. I am so very proud of him. I am proud of all my children. Well i gotta go to bed now.
Love,
Jamie

Wednesday, March 22, 2006 2:31 PM CST

Hi Everyone,
We haven't done alot. We did however get the results of the MIBG scan. The docs told us that everything is good. So we are off and loving the fact that we don't have to worry over the next few months. We sure do love not worrying.
Next Saturday, Shawna is doing a mini THON at one of the local high schools. Garden Spot in New Holland. I am so proud of her for doing this. She is planning to do her senior project starting this year. She wants to plan Mini-thons and other fundraising for the 4 diamonds fund. I am so proud of her. She surely is one of my main inspirations. We are all very excited for miniTHON to happen because our dancers and friends we made at Penn States big THON are coming down to support Shawna. I am so happy to be seeing them all again.
Not really too much to report. If anyone would like to sponsor Shawna email me and i will send you our address.

Love to you all,

Jamie

Monday, March 6, 2006 1:34 PM CST

Hello,

We haven't really done a whole lot since last update. The only exciting thing we done was go up State College to THON. We had an awesome time. Check out the photo gallery. There are some new pics. We are also going up to hershey for an MIBG scan. So if you have time do some praying.

Love to you all,
Jamie

Thursday, February 2, 2006 3:47 PM CST

Hello everyone,

I was just writing to update you all, Brandon's doc is still not sure what is going on, we are going to watch him and do his next round of scans earlier then normal.

Got report cards today. Brandon did well. Shawna not too bad, and Shay well he didn't good to bad either.

THON is coming up quick we are excited about going to State College. Shawna is also doing a Mini-Thon in April. She has to raise a minimum of 50 dollars.

Well I really don't have alot to say right now. cause there isn't much to say.

Love to you all,

Jamie

Tuesday, January 24, 2006 12:55 AM CST

At the request of several people I am here to update. I do apologize for the delay, but not a whole lot has been going on. Brandon had tests done CT scan was clear, Bone scan was clear. MIBG well thats another story. It came back showing something on his liver, Dr. Powell ordered an MRI the following week, and gave me the results of that right away. That showed nothing, so he is trying to get a hold of Dr. Marris down at CHOP to see what he thinks. Getting very impatient waiting for him to get back to me on that. We have a drs appointment on Thursday so I will be asking about that again.

As far as school goes, Brandon is still thriving. He is reading books almost on the level he needs to be on. When he started school he couldn't read very well, now he reads to me and I just wanna cry cause he is doing so well. He is also doing very well in the other subjects, has a bunch of friends. He went to the skate park with Shay last Saturday and had an awesome time. He was telling me all the tricks he was doing and I know some of them he made up, but he had just a wonderful time telling me his story I just left him go.

Shay is doing well, he is still doing good in school. He is making lots of friends and having a great time too.

Shawna is doing awesome, I can't believe she will be 15 this year. She is still my little baby girl.

Matt well I would fill you in on him but I am not sure how he is doing, he doesn't come and visit or even call.

Craig and I are still going strong. I am back in school for my second term. My grades for my first term were A's, B's, and one C. I almost cried when I seen that.

Well enough for now. I will let you all know how the docs visit went Thursday.

Jamie

Sunday, November 27, 2005 1:01 PM CST

It has been a long time since my last update. I apoligize. I didn't know how much time me going back to school would take up.

Brandon is doing well (knock on wood). We go for a CT scan and a Bone Scan on Thursday Dec. 1st. Then next week we go for an MIBG scan. They are doing it different this time. I think it is great. It is only 2 days instead of the usual 4. It's a trial thing but hopefully we get the same results as the 4 day scan. Connie I'm gonna email you about this they tell me its the same way it is done at Chop. I haven't been given to many details on it should have more information on Thursday. Anyway as far as school is going for him he is doing rather well. Actually better then the school anticipated. Which makes me proud. He has had some hearing loss due to the chemo last year. We had our 1 year post transplant visit, that went well. It is hard to believe that one year ago we were stuck in the house and now he is going to school. We are truely blessed.

Shay is doing well in school. Report cards came out and we had to make sure they sent us the right one for him. Seventh grade certianly agrees with him. We are going to have to get Braces on in December. That will be fun.

Shawna is doing great too. School report cards were her usual great grades. She is growing up so fast.. She has so many friends that are seniors so she thinks she is so cool.

Matt had his appendix out, he recovered very quickly. I knew he would. He was named Student of the Month this month through his votech. Which is great. He is busy completing his senior project so he can go on co-op through school.

I am doing very well is school also. It is alot harder then I thought it would be. But I have to do it.

We went to Disney and had an awsome time. We didn't have alot of relaxing time, but it was worth it. I love vacation. Well I am going to get going now. We are working on the Christmas things now. So I best go.

Love to you all,
And say an extra prayer that scans continue to let us have his NED status.

Jamie

Monday, October 10, 2005 2:57 PM CDT

Hi all,
Well things are going very well. Brandon continues to do well. We have to go to the stem cell clinic tomorrow for a checkup. I can't believe it is almost a year. October 26th is the big "birthday". So far all is going great. Still very nervous, but starting to feel some sense of normalacy. I hate to use that word normal cause everytime I do something goes wrong. I just have to get over that feeling. Anyway, Brandon continues to do well in school. I am so proud of him. The first couple of weeks were very hard for him. And for me. But we both got over it.

Last Tuesday night we had to take Matt to the hospital. He was having major abdominal pain. He had to have his appendix out. Boy is he milking it. But he's a man so what do you expect. Shawna and Shay continue to do well. We are all getting excited about going to Disney World. Only 18 days away. Thank God I could use the vacation.

Like I stated last entry, I went back to school. I forgot how stressful it could be. But I love it. I had my first spelling quiz today. I think I did pretty well. I hope!! I have a midterm already on Wednesday. Well better go gotta start dinner.

Love to you all and Thanks for stopping by and continued support.
Jamie

Monday, September 26, 2005 11:22 AM CDT

Hi all,
Just wanted to stop in and give an update on Brandon. He is still in NED status YEAH!!!! He goes up to Hershey again on Thursday the 29th for a checkup with Dr. Powell. We aren't to nervous. Brandon is doing well in school. He says he hates it now cause it is too long in the day. And he doesn't like the hard stuff. But he continues to do well. He still gets up every morning and goes. He is so brave. I am so proud of him.

Shawna got a job, which she hates. She is bussing tables at a local resturant. She likes the money though. She continues to do well in school.

Shay is doing well in school, and wishes he could get a job. I keep telling him he has plenty of time to work.

Matt has turned 18, got himself a new job making more money. He is still doing well in school. Which I am so glad for.

I also have decided to go back to school. I am going to go to a tech school. I am going to be a certified medical assistant. It will take 18 months of full time school, but I guess in the end it will be worth it. I have decided I need to do this. I just hope finances hold out. I am sure they will. Craig is being very supportive as are the kids.
We went to the beach for the weekend. We had a great time. Brandon actually went in the water this time. I am really proud of him. Craig, Matt and Shay were boogie boarding for hours. Also came back with a pile of sand. Thats about the worst thing at the beach I hate the sand you bring home. Well I guess I better go now.
Write more soon.

Jamie

Monday, September 12, 2005 8:34 AM CDT

HI All,

Everything is going great. Brandon is in NED status!!!! YEAH!!!! I never thought three letters would mean so much. We are enjoying live to the fullest. We had a great couple of weekends. We took the kids to Knoebels and got Shay and myself on the rollercoasters. First time for both of us. It was great. I never believed they could be so much fun. Facing fears for Shay and I was wonderful and the best part was we did it together.

We also went 4 wheeling again over Labor Day weekend. We also suprised Brandon and Shay with a concert. The band we went to see is everyone but Shawna's favorite. Matt couldn't go cause he had to work. So we took Brandon and Shay to see Motley Crue. It was awesome to see the look on the boys face when they found out. Craig and I faked them out we had them thinking we were going to the monster trucks. I kept telling them I would never take them to see the Crue, but after last year I will take them anywhere we can afford to go. They had a great time. So did Craig and I reliving our youth. To be young again.

Brandon is doing awesome in school. He is having so much fun. He is just like the others though, he whines when he has to get up in the morning, but once he's up he gets ready and has to be the first one at the bus stop. He looks so cute getting on the bus. Well I have to go for now. I must get a few things accomplished this morning. Thanks for stopping by.
Jamie

Friday, August 19, 2005 8:36 AM CDT

Hi all,
Sorry about so long between entries. We have been busy. We are trying to have as much fun as we can before school starts. Which incidentally is only 7 days away(yeah!!!!!). I'm not excited at all yeah right. Brandon is so excited, I can't wait till he gets on the school bus for the first time. He will be going to first grade. Anyway, here is whats going on right now.
We went to Six Flags America last weekend. We went with Brandon's Aunt Crissy, Uncle Keven, Christopher, Deven and Mommy, Daddy, and Shay. We had an awsome time. We got to meet Batman and the Joker. Brandon and Chris loved that. We also got pictures with Marvin the martian, Bugs Bunny, and a few other characters. We went on so many rides. On the river rapids we got soaked, we actually got Uncle Keven and Christopher to go on a roller coaster. It was the kids coaster but its a start. Hopefully we can get them on the coasters when we go to Disney. They also had a wave pool there and Brandon didn't want to get out of it. He had an awsome time in the pool. I am going to talk to Connie and send her a disc of pics to ad to his webpage for all to see.

We are going to the Pyrates Weekend at the Ren Faire this weekend. With Make-A-Wish. I am sure that is going to be awsome too. We went to the mountians 4-wheeling again that is so much fun. I hope we can go over labor day weekend again.

Brandon as far as treatment is finished. He is getting a CAT scan today and also a Bone Scan. Next week we have to go for an MIBG scan. So things are pretty tense for alittle till we get the thumbs up from the Docs all is clear. Well I guess I am going to go for now.

Love to all,
Jamie

Monday, July 25, 2005 9:50 AM CDT

It has been awhile since my last update. Over the last few weeks we haven't done a whole lot. On the 14th we had a drs appointment and were told so far so good. Everything is pointing to NED status. On Friday the 15th we went to a balloon release for a very special girl Michaela Ann Mease. Michaela's 1 year anniversary of gaining her angel wings was on the 15th. The 15th was also the day we are officially off treatment and in NED status. Michaela is watching out for my boy, that day was very emotional for me. Knowing what could happen and being were we are now.

We haven't done anything special till this past weekend. Shawna and Shay had to take a 4 wheeler safety course. Both of them have pasted with flying colors. I am so proud of them. This weekend we are going to the mountians again to ride 4 wheeler. Next Monday Shay has to get 8 teeth pulled so we can get braces on his teeth. That will make next week not very exciting. Shawna has band camp when we come back from the mountians for 2 weeks. And thats about all going on.

The only other thing is we are planning a trip to Disney World with Craig's family. We went and got our park tickets and our airfare was booked so thats kinda exciting. I can't wait till October.

Thanks for all the love and prayers.
Love to you all,
Jamie

Tuesday, July 12, 2005 11:11 AM CDT

Hi everyone,

Sorry about the lack of updates. We have had a busy couple of weeks. I got the results of the tests ran on Brandon. They were all negative. Thank God. We went away for the 4th of July. We went to the cabin, which normally I can't stand. But this trip was outstanding. We went riding 4 wheelers. It was the best time. I am ready to go again. I will post pictures as soon as I pick them up. Which hopefully will be tonight. We had two injuries and one broke 4 wheeler. The injuries we had were very minor. Shay got the wind knocked out of him by Craig. He was riding with him and Craig hit a big bump when they landed on the ground it must have hit harder then they thought it would so when they landed it just knocked the wind out of him. It was kinda funny. Shawna rolled her's and ended up with a sprained finger. It was kinda funny. Not when it happened after the fact. That all happened on Saturday. When we went out on Sunday Shawna stayed at the cabin with my dad, and we went out for about 6 hrs. That was when Matt busted the shock on his. We were in the woods about 20 miles so it was a long slow drive back.
Shawna's birthday was on Tuesday the 5th we got her a cake with a four wheeler on it and turned the 4 wheeler on its side. She didn't see the humor in it. We all found it very humorous. Shawna also had a sleepover birthday party on Friday. Note to all who think teenage sleepovers are a great idea. Your wrong!!!! They didn't go to sleep till 6 the next morning. There were 9 of them and it felt like 20.

Brandon is on his last round of accutane. Then our treatments are done. I am not sure what to do after that. I guess just try to be as normal as possible. I am not sure i remember what that is anymore. I guess a job is on the horizon. I am taking a home course in medical office training so hopefully I can get that course done and find something in the medical field. Well that is about all for now. Like i said i will put new pictures up soon. Hopefully tonight.

Love to you all,
Jamie

Thursday, June 23, 2005 6:02 PM CDT

HEllo everyone,
Well we still have no news on the tests the doc ran last Friday. So I am going with the old saying "No news is good news" This will be short cause there isn't much to report. So far we are having a great summer. Went to the beach, had our pig roast got pics from both will post new ones soon. Thanks Aunt Lori for the pics from the pig roast they are great.

Well thats about it for now.

Love
Jamie

Saturday, June 18, 2005 6:42 PM CDT

Hi everyone,
Well it has been a while since my last update. Brandon's MIBG scan is CLEAN!!!!! We were suppose to get the port out on Thursday, we didn't because on Wednesday night I had the biggest scare. Brandon started to complain of leg pain again. I was so scared since this is what started the whole thing. It was just my paranoia setting in. We had to see Dr. Powell on Friday, he put my mind at ease for a little while anyway. I get so scared everytime he complains about something. I sometimes start thinking we are actually starting to live normal again, then he says he has pain or he falls and I don't know it, so my first thought is it's back. The NB beast needs to die. I am so tired of living in this shadow all the time. I know things could be worse and I should be thankful for what I have. Don't get me wrong, I am very thankful for all my kids and friends and family. I look at the NB list all the time and see how all the others are fairing. Most times I just sit and cry with my computer. I have to shut it off sometimes cause the pain I feel for the other families hurts so much. I am sorry I am rambling on about such sadness when my son is running around "healthy". I just get into a funk sometimes like I am right now. To many have been taken, to many are fighting We need to find a cure soon. Well I better go.

Jamie

Friday, June 10, 2005 8:01 AM CDT

This past week has been a hectic week. Brandon's MIBG scan is finished. We had to go to the hospital everyday except today. Had to run Shawna and Shay to the dentist on two separate occasions. Also finishing touches on PIg Roast.

Thursday was the kids last day of school.
Matt has informed me he is now a senior. God I remember when he was a baby. Seems like just yesterday. He also asked me to take him in to Stevens Tech sometime soon. He's thinking about college already.
Shawna is now in the nineth grade. She received 3 awards the first one she showed me made me cry. It was one from her teacher for "Being the Best Big Sister", the next award is for being on High Honor Roll all year. And Finally she received the Presidential Award for Academic Excellence. She makes me so proud, not only as her mom, but as her friend.
Shay got an award for always helping out. REport cards come out sometime next week.

I had to spend Tuesday evening in the hospital with my nephew. Which was kind of a nice switch. Christopher was playing with a neighbor kid, who decided he was going to push him down. Apparently he pushed him really hard. He broke his collar bone. Christopher was so brave. Well I best be going now. Have some things to finish up. Just wanted to give a quick update on whats going on.

Hope to see you all at the Pig Roast.

Thursday, June 2, 2005 6:59 AM CDT

Hi Everyone,
Sorry for the length of time since last update. We have been busy getting things ready for the upcoming pig roast, which I hope to see everyone at.

Brandon is doing well. I hate to write that cause it seems like everytime I do, with the plan of watching Shawna play with the band at Hershey tomorrow, something always goes wrong. Lots of things have been going on since my last post. Brandon's plateletts are recovered enough to have his port removed the week after the pig roast. This upcoming week he has to have an MIBG test done. It is a test to see if there are any Neuroblastoma cells in his body. This test is a 4 day test, thank God we won't have to be admitted for it. Knock on wood. The following week is when the port comes out and while he is under anesthesia they are going to do a bone marrow aspiration. I feel good about these tests. Brandon is excited for his upcoming birthday. Shawna and Shay are excited school is over soon. Next Thursday to be exact. On the 13th and 14th we are going on a Suprise trip.

I think that is about all I have for now. I will post more as I find out.

PLEASE everyone pray for Kelly who was just told her son Jamie has relapsed. Jamie's site is on Brandon's homepage.

Tuesday, May 24, 2005 7:08 AM CDT

Hi Everyone,
I am here to update you all on Brandon and my family.
Brandon still has his port in. We are currently on antibiotics through the port until it comes out. His platelett count has to come up some more before it is taken out. The visiting nurse is coming out today to take blood for counts so hopefully I will get a call in the next day or two saying they are ready to take it out. Brandon is still doing very well, he is playing and watching his favorite movies right now. Star Wars. He is driving me crazy with it. We even had to take the family to see the new one. Shawna was so excited she fell asleep. Speaking of Shawna, she will be playing with the school band at Hershey park next Friday. I hope I can make it to that. I missed her spring concert the week brandon was in the hospital. I felt so guilty. She wrote a report for school that was supposed to be 5 paragraphs long, it ended up being 16 pages. She wrote about Childhood cancers. It wasn't a report filled with statistics, it was filled with interviews of parents, nurses, doctors. The report is very personal, she did an excellent job on it. IF anyone would like to read it please email me and I will email you a copy. But I will warn you have a box of tissues nearby.

Shay is doing well also, he is working very hard to earn himself a dirtbike. I am not particularly thrilled with this idea but I guess if he earns his dirtbike there isn't a whole lot I can do about it. Brandon also thinks he needs a dirtbike or a four wheeler. Once again not thrilled, but I have to let him be a little boy. Can't baby him forever.

Not sure if I mentioned this before or not, but Brandon's scans came back negative. We have to have an MIBG done, not sure when, probably after port is removed. Keeping my fingers crossed.

The highlight of my weekend was going to a gymnastics show. The K&B Gymnasts did a cartwheel-a-thon back in April, the girls ages 3-10 asked people to pledge either a flat amount or a per cartwheel amount. The kids did an awsome job. The amount of money they raised was so overwhelming. All I could say was thank you. If i would have said more I would have been bawling like a baby. The crying wasn't cause of the astronomical number. It was of how hard they worked. I know they had to have worked very hard. The pride these children showed when they were performing the show, getting their awards, and sharing part of their lives with us. We are truely blessed to know this group. Brandon enjoyed the show, and Shawna gave out trophies. Kristi, Jay, Barb, and Bob Thanks for everything. We will be intouch.

Well I think I will go for now. Love to you all.
Jamie

Wednesday, May 18, 2005 6:53 PM CDT

Hi everyone,
I am posting from home now. So glad to be here. We had to do some pursading to get here. But I guess the old saying of "the squeaky wheel get the attention" is true. Boy was I squeaking today. I know you all are saying not you Jamie, but yes I was. We had to bring the port along, but it will not be here for too long. I am going to go for now, because I wanna enjoy my first night back.

Pig Roast details coming soon.

Jamie

Sunday, May 15, 2005 8:31 PM CDT

Hi everyone,
We are still in the hospital. We have moved to 7 West thank god intensive care sucks. Brandon has allowed me to go on the computer for a little while. He is looking for books to read to me later. He is doing excellent. His belly is distended and they are not sure why. I think its all the fluids they gave him when we first got here. I am going to talk to the docs about this later tonight. I am sure they will like me so much when I am done. He looks so good right now. I don't see any reason he needs to be here. Except the belly thing. That is why I will be talking to the docs. I don't want to be here either. Well I better go he has started reading now. I will be updating you all on the past week and how stressful this admission was for us later.

Love to you all,

jamie

Saturday, May 14, 2005 1:07 AM CDT

Good morning,
Just a quick update. Brandon is doing very well. He will be moving back to 7 West in the morning I hope. That is if there is a bed for him. We should be out in a couple of days. He will go home portless. That is the best decision as far as his infections go. He's not real thrilled with getting blood drawn out of his hand, but he said he will deal with it. Well i gotta get back to him, just wanted to give you a quick update.

Love to all. we also made a new friend Travis Yost. Please everyone say a prayer for a speedy and full recovery for him and his family.

Thursday, May 12, 2005 4:59 PM CDT

I don't have alot of time right now. I just wanted to let everyone know Brandon was admitted today for what they are thinking is a line infection. They are having a hard time getting his blood pressure stablized. Hopefully within the next few hours that will be taken care of. PLEASE everyone pray for my little boy. He looks so helpless. We were battling a fever overnight and when I brought him in today, they accessed him and he got worse. That is what is making them think it's just a line infection. I am starting to think its time for the line to come out.

Well gotta go for now. Love to you all and please say an extra one for Brandon tonight.

Jamie

Sunday, May 1, 2005 8:32 PM CDT

Hi all,
First of all I must Thank Kim and Tracy for having a very successful Basket Bingo. We had such a great time. I am so proud of them. They did a wonderful job. I am so glad Connie Strayer came down to the bingo. I am so glad we got to meet the right way this time. The last time I seen Connie was when we were in clinic. Jared her son was just finishing up treatment and we were just beginning. She is such a neat person. We didn't get to talk alot, but it felt like we've known each other for years. Thank you to all who have come and supported us.

Brandon continues to do well. We have to go for scans on Friday. These will let us know if we are still in NED status or not. Please pray for his continued health.

Shawna, Taylor and Crissy made $150 in donations last night at the Bingo making bracelets. They are donating the money to Brandon's Make-A-Wish convoy driver, his Uncle Willie. The convoy is Sunday, May 8th, Mother's day. Willie put train horns on his truck for Brandon to blow as they are driving through the convoy. Hope to see you all there.

Well gotta go for now.
Jamie

Sunday, May 1, 2005 8:32 PM CDT

Hi all,
First of all I must Thank Kim and Tracy for having a very successful Basket Bingo. We had such a great time. I am so proud of them. They did a wonderful job. I am so glad Connie Strayer came down to the bingo. I am so glad we got to meet the right way this time. The last time I seen Connie was when we were in clinic. Jared her son was just finishing up treatment and we were just beginning. She is such a neat person. We didn't get to talk alot, but it felt like we've known each other for years. Thank you to all who have come and supported us.

Brandon continues to do well. We have to go for scans on Friday. These will let us know if we are still in NED status or not. Please pray for his continued health.

Shawna, Taylor and Crissy made $150 in donations last night at the Bingo making bracelets. They are donating the money to Brandon's Make-A-Wish convoy driver, his Uncle Willie. The convoy is Sunday, May 8th, Mother's day. Willie put train horns on his truck for Brandon to blow as they are driving through the convoy. Hope to see you all there.

Well gotta go for now.
Jamie

Sunday, May 1, 2005 8:32 PM CDT

Hi all,
First of all I must Thank Kim and Tracy for having a very successful Basket Bingo. We had such a great time. I am so proud of them. They did a wonderful job. I am so glad Connie Strayer came down to the bingo. I am so glad we got to meet the right way this time. The last time I seen Connie was when we were in clinic. Jared her son was just finishing up treatment and we were just beginning. She is such a neat person. We didn't get to talk alot, but it felt like we've known each other for years. Thank you to all who have come and supported us.

Brandon continues to do well. We have to go for scans on Friday. These will let us know if we are still in NED status or not. Please pray for his continued health.

Shawna, Taylor and Crissy made $150 in donations last night at the Bingo making bracelets. They are donating the money to Brandon's Make-A-Wish convoy driver, his Uncle Willie. The convoy is Sunday, May 8th, Mother's day. Willie put train horns on his truck for Brandon to blow as they are driving through the convoy. Hope to see you all there.

Well gotta go for now.
Jamie

Tuesday, April 19, 2005 7:55 PM CDT

Hi everyone,
Brandon continues to do well. He did not need to have the IVIG to get rid of the virus, his body fought it himself. Which is wonderful. He had a great weekend. We cut the tree down out front with only one minor chain saw injury. Melisa you will really appreciate this. I yes me Jamie played nurse and cleaned it out and bandaged it all up. Came along way from the splinter hahaha.

Got report cards yesterday, Shawna as usual is on the High Honor roll. So proud of her. Shay I am equally proud of, last marking period he got an F in math. This marking period he brought it up to a C and is now on the Honor roll as well. Brandon is going to go to first grade next year, he keeps telling me he's to smart for Kindergarten. So we are registering him for 1st grade. Hopefully the first day of school isn't taken away again.

Brandon and his cousin were invited to go to B&K gymnastics to get some of donations they raised for him. Brandon took Christopher along and now they both think they need to join. He absolutely loved it. I think hes a natural. The check they gave me today isn't all of the money they raised. I don't know how much cause they will not tell me. All Miss Kristi would say was when she found out she had to sit down. I am so proud the the kids who did the cartwheels. After sitting and watching 2 classes tonight I see all the determination they have and how proud of themselves they are. There were a few of the younger girls after my boy too. They kept saying hes handsome. How proud was I?? Well thats about it for tonight.

Just a few reminders, Basket Bingo coming up April 30th and the Pig Roast on June 11th.

Love to you all,

Jamie

Thursday, April 14, 2005 6:14 PM CDT

Hi everyone,
Just wanted to let you all know we had to spend a couple of days in the hospital this week. Brandon ended up with Rotavirus. This consisted of a fever and major diarrea. Sorry about the spelling. I had to take him up Monday night well actually Tuesday morning. We came home Wednesday. So it wasn't so bad. Now we just have to wait for his body to fight this off. So far he is doing very well. The main concern is dehydrating. But he is drinking plenty. If he continues with diarrea the docs with give him an infusion of IVIG. Don't ask cause I have no idea what it is. But that is about all thats going on right now with him.

I also want to let everyone know Kim and Tracy are having a Basket Bingo on April 30th. I hope to see all my friends there.
Love to you all,
Jamie

Sunday, April 10, 2005 10:14 AM CDT

HI All,
Yesterday was one year since diagnoses. I was in such a funk yesterday and couldn't figure out why, until I asked Craig what the date was. He told me the ninth and I knew why. I look at Brandon now and see him running around and playing like a "normal" kid. Then I think back to how he was just one short year ago. I say short, but I think it was the longest year of my life. I pray to God everynight that we will never have to go through that again. I look at Brandon and remember the last year and know we are truely blessed. I think about all the people I have met over the last year and know if I wouldn't have met them we never would have made it through. Well we would have but I think I would have had more nervous breakdowns then I did. Yes this is a very depressing entry, for that I am sorry.

On a happier note Brandon along with the rest of the kids are doing great. Craig is doing good except he had to work today.

Bye for now
Jamie

Tuesday, April 5, 2005 10:55 AM CDT

Hi everyone,
Today is a great day, the sun is shining. We got back from Brandon's Make-A-Wish trip on Saturday. The trip was awsome. We went to Sea World and seen Shamu and her baby. We also seen a dolphin named Duncan which reminded Brandon of his friend. Who by the way is also doing wonderful and will celeberate his 7th birthday on Thursday. We fed seals and seen sharks. It was a day that started out raining and ended up being beautiful. Sunshine and warm enough to go with out a jacket. I guess I should start with the limo ride to the airport. It was so cool. The kids thoroughly enjoyed it. We got to the airport and had to go through security. Then we waited for about an hour for our plane. We boarded a jet. It was cool. Brandon laughed as soon as the plane started down the runway. He loved the speed. Shay was scared to death till we were in the air. Then he finally looked outside and seen how awsome the clouds looked. When we left the ground it was raining and dreary, then we reached our final heighth and the sun was shining and the clouds were puffy white and absolutely beautiful. We landed in Atlanta for a connecting flight to San Diego. Same thing again, as far as the weather. Landing in San Diego we could tell we were from out of state cause we still had our jackets and sweatshirts on, but they came off fast. Our hotel room was cool. Monday as I stated in the beginning was Sea World. Tuesday we went to the San Diego Zoo. It was neat. We seen all sorts of animals. I loved the Polar Bears. I think Brandon's favorite part was seeing the big bird eating a rat. He likes that sort of thing. We went on a safari ride. Tuesday night we had dinner reservations at the most incredible steakhouse we have ever eaten in. Thank God that was on Make-A-Wish cause I think the bill was probably well over 300 dollars and plenty worth it.
Wednesday we went to legoland. It also was very cool. They had all kinds of rides, a couple of roller coasters which of course I had to get on, I didn't like them before but I do now. I had to ride them cause Brandon kept guilting me into it saying this is his Make-A-Wish trip and I should do what he wants me to. So anyway we all found out we love the rollercoasters. Shay was scared too, but not anymore. After legoland we went back to our room and packed a bag, cause Thursday and Friday were free days to do what we wanted to do. We decided to go to Disneyland. We drove up Thursday morning, a trip that should have taken 2 hours only took us 1 hr, 20 min. Craig found the carpool lane. We stayed at the Castle which was right across the street from Disney. When we got to Disney Craig went to rent a stroller for Brandon and the kids and I went in to wait for him out of the crowds. Well guess who was right inside the door waiting for me?? GOOFY!!! I will post that picture as soon as we get them back. We had so much fun at Disney. We watched the parades, went on rides yes more rollercoasters, ate, and did some shopping. Brandon fell asleep before he could see the electric parade, but Craig taped it for him.
Friday we got up and went back down to the hotel, but we made a stop along the way. We had to put our toes in the Pacific Ocean. We ended up going to a dog beach. I had know idea these beaches even existed. But it was fun. Seeing the dogs made the kids miss ours. The ocean was awsome. So clear and the day was absolutely great. After the beach we went back to our room and Craig and I packed while the kids went swimming. Brandon was so happy he could finally go swimming. He didn't get to go last year. After we finished packing Craig and I joined the kids at the pool. What a wonderful way to end the best week of our lives.
Saturday we had to get up early and go to the airport. We were sad to see it come to an end, but also happy cause we missed our family and mostly our dogs. We got home about 10pm. Our luggage didn't make it home until about 11pm Sunday night though. Well I guess I have rambled on long enough. I promise more updates regularly now that the house and vacation pressure are off.
Jamie

Wednesday, March 23, 2005 8:07 PM CST

HI Everyone,
I know I have not updated in a long time. There has been alot going on. I know have alot of things to update everyone on. First of all, Brandon is doing great!! He is running around like a wild man. We decided to take him off the antibody therapy. We had the high calcium level. Then we had an infection in his line. We were going in for a third try for the IL2 drug and he ended up with another infection. So we decided 3 strikes and your out. Brandon had a helping hand in making the decision. He told us that he is tired of the hospital, and we explained that his "sick" could come back. He is such a smart boy he said will the other medicine keep it away. We don't have a guarentee so he said we will deal with it if we have too. He is such a smart kid.

We have finally finished painting and carpeting the house. Boy am I glad. The other kids are doing great. Matt continues to work and going to school. He is still doing good. Shawna is doing excellent in school. She decided to play in the marching band next year. She is also in dance at school and has a recitle coming up in May. Shay is doing alot better in school. He is still having some trouble. But he's doing alot better. I am so proud of all of them. After the last year we had and they are all still doing excellent. I have wonderful kids.

We just received our tickets for our Make-A-Wish trip. I can't wait to go. We are going to CA. Brandon is so excited, well we all are. Well I am sorry this is a short entry considering I haven't updated in along time.

I also want to thank the B&K Gymnastics group for the Cartwheel-A-Thon.
Kim and Tracy are planning a great basket bingo coming up on April 30th. I will put in the times and whats going on in my next update. I promise it will be soon. Well gotta go.

Love to you all,
Jamie

Tuesday, March 1, 2005 7:35 PM CST

Hi Everyone,
I have been very bad. I have not updated you all on Brandon coming home. We came home yesterday in the snow. It was great. We watched the snow fall all night. It was great. Just sitting around and watching it snow. Well that's not the whole truth. We did come home in the snow but sitting and watching it was not the truth. We actually were working on the house somemore. That was great fun to come home too. But atleast we are home. We have to go back to clinic on Friday. Which isn't so bad. Probably be admitted again on Monday. For the next phase of the antibody. Hopefully it happens this time. Well i gotta go for now. Bye.

Wednesday, February 23, 2005 5:20 AM CST

Hi everyone,

Well we went in for our Interluekin treatment yesterday. Brandon was doing well. We had to be there at 7 so we left around 6. When we got there we had to check in and went up to our room. Brandon was not happy. I had to put numbing cream on his port before we left. Anyway when we checked in they had to call the IV team to access his port. This scared him. It is only the second time he was accessed. After they accessed him, which he didn't even feel he said he was sorry for acting like a baby. I told him he's not a baby he's very brave. Then we played and watched cartoons for about an hour. Brandon curled up in a little ball like he does before he goes to sleep and started shaking I turned the heat up covered him with more covers and snuggled up with him. The docs came in and looked at him went out and asked his nurse what is wrong with him. Is he having a reaction to the med already. She didn't even start him yet. Here there was a bug hiding in his port resevior and when they accessed it and flushed it the bug was so happy he was free he invited some of his friends over and they are having a party inside my little boy. Brandon could not once again start the Interluken, but he is receiving a regimen of antibotics. He slept most of the day yesterday. Daddy stayed with him last night. I have to work the rest of this week and Friday is my last day. I am receiving a severence. I am not sure how I feel about it. I know I am happy because I can actually get one thing off my mind and concentrate more on my kids. So that is a definite plus. Well I better go now. I will update more later.
Jamie

Monday, February 21, 2005 7:10 AM CST

Hi everyone,
Here is the update I promised. On Friday we went to HMC for bloodwork, and I was all ready to argue with the doc. But he gave me all the answers I wanted, before I could even ask the questions. Brandon is back on his Megace. The medicine which helps him eat. I was told that him not eating contributed to his high calcium level. So hopefully that won't happen again with him on this medicine. We are going to continue with the study, at least the next round have to see how things go.

Our buddy Duncan went in for surgery on Thursday to have his last two tumors removed. As of right now Duncan and Brandon are both cancer free. Still have to watch them closely, but we will enjoy all the "free" time we have. Hopefully it is a life time for both of them.

Anyway, we went to THON this weekend up at State College. We had fun. Brandon didn't wanna hang out at the college for long he thought the room we stayed in was cool and wanted to be there. We went over to THON for a while. But he got tired to quick. Shay had an awesome time. He got to work the cameras for about 2 hours. He was in all his glory. Shawna was supposed to hand out food and drinks, but I thought it would be best if she didn't cause she was still feeling pretty crappy. Matt and his girlfriend had a good time too. I wanted to meet Connie and Jared, but like I said Brandon wanted to hang out in the room most of the weekend, so I didn't get a chance to do that. Well I better go have to get my work done. I'm off tomorrow, Brandon is going in for round 2 of the antibody treatment.

Basket Bingo date has been set for April 30th at the Knights of Columbus in Lancaster. For more info you can email Tracy Musser at Tmusser36@aol.com or call her at 717-872-4319.

Pig Roast details coming soon.

Conestoga Valley High School Track team is going to run 3000 miles in the month of Feb. to raise money for Brandon. Go CV.

Also the KB gymnastics team picked Brandon for their cartwheel-athon. Thank you to all of you.

Thursday, February 17, 2005 8:47 AM CST

Hi everyone,
We have been pretty busy. That's why no new updates lately. Brandon is doing well. He is still not eating the way he should, but I guess it will take some time. We finally got the results of his bone marrow biopsy done back in January. THEY WERE NEGATIVE!!!!!!!! That takes alot off of ones mind. I guess we are going to continue with the study unless they can't give him something to help him eat. Right now he is getting TPN(iv nutrition), which is okay, but we have to hook him up every night. Thats okay as long as my baby is home.

We are working on giving the house a new look. Well we really have no choice. We still have a small mold problem. My sisters friend said it is from all the moisture in the ground soaking into our basement. The basement isn't to bad, but it is in our heating vents. So we need to get them cleaned. The vent guy suggested the best thing to do would be to replace the carpet. Thank God Craig's brother in law lays carpet for a living. Thanks Keven, we kinda volunteered him. So of course new carpet means new paint. Thats my job. I know this all sounds expensive, but you have to know where to shop. It also helps to have friends who can get discounts. Lots of discounts. The basement problem will be taken care of too. Within the next couple of weeks. Thank you Leroy.

We are getting ready to go to THON this weekend. THON is a fundraiser for the four diamonds fund. It is at Penn State's main campus at State College. We are going up Friday night and coming home Sunday. We can't wait. We have a group of dancers dancing just for us. I can't wait to meet them. They have sent all of my kids one big care package and then gave the kids each a pen pal who has also sent each kid a carepackage. Which the older kids really enjoyed. Brandon gets mail all the time. They don't and felt real special when they got theirs.

Everyone is doing well. I will post an update probably Sunday night or Monday. I am hoping to get the page updated alittle with new pictures. Can't say when that will happen. We are also looking forward to meeting Jared Strayer and his mom. We talk over the net, but it would really be nice to meet them in person. Well I better go now. Talk to you all real soon!!!!

Jamie

Tuesday, February 15, 2005 1:22 PM CST

BRANDON'S COMING HOME!!!
Will update more later
Jamie

Saturday, February 12, 2005 6:22 PM CST

Hi everyone,
Things are looking even better. Brandon should be discharged on Monday. That's the plan anyway. We will be home for a week for sure. I think we are starting to make some headway with his eating problem. I talked with Dr. Neilly today about it and he seems to agree with us. Should be some kind of plan in effect for him before he leaves. Which makes me very happy. I think Brandon is going through a bit of depression. But they can give him meds for that. Which should make him feel better at least good enough to eat. Well I better get back to him. Shawna didn't enjoy her evening in the hospital. She didn't realize how boring it really is. But she did have a good time being with Brandon. I thought with her here I would get some sleep. Boy was I wrong.

We are excited about next Saturday. We are going to THON. It is a dance a thon at the Penn State campus for the kids. We are going to hook up with some of our new found friends, like Jared and his mom Connie. Well I better get back now.

Love to you all
Jamie

Friday, February 11, 2005 8:34 PM CST

Hi all,

Things have certainly gotten better over the last two days. Brandon is finally back in 7 West. Thank God. The nurses in ICU are nice, but it wasn't home. He is in very good spirits. He is having a sleep over tonight with is sister. Shawna is spending the night with him. He is in all his glory. She got him to eat some chips tonight and they are watching spongebob right now. This will have to be short cause I have to go back to them and be sandy the squirrel. A game brandon plays while he watches tv.

Thanks for all the love and prayers.

Jamie

Thursday, February 10, 2005 12:36 AM CST

Well we have had eventful week. We went in Monday for the mediport to be put in. The doctors got the mediport in and all was well. Brandon and I were enjoying a restful nights sleep till about midnight. When the doc woke me up and told me Brandon had an exceptionally high calcium level. They thought that maybe the blood work was contaimenated and drew more blood. To find out it was not a mistake. I was told the level of his calcium could cause damage to his heart or worse. They ordered an EKG right away that showed no signs of damage. But they had to get his level down. I really go scared when Dr. Comito came in the room. She was telling me all the things that could happen if we don't get the level down. Then she told me he was going to be moved to intensive care. Monday they called in a kidney doctor, who ordered different drugs to get his level down. Tuesday his level came down some, but then started to go up again. So we had to do different drugs. Brandon had to get 3 shots of a medicine I can't pronounce to get his levels down. Wednesday when I got up to the hospital his level came down to 11. Thank God.
We are waiting for a room in 7 West to become available. Hopefully we can get there soon. If not maybe we can come home. Yeah right wishful thinking. Now our next battle will be getting him to eat. I have been thinking about different reasons for him not eating. I will be asking questions about that tomorrow. Well I am going to go for now. I have to get things together for my overnight stay tonight. I need to let Craig come home and get a good nights sleep.
Please keep praying.

Also when your saying your prayers for Brandon, say one for Duncan. I found out today he still has the beast.

Jamie

Friday, February 4, 2005 5:59 AM CST

Thank God for Friday,
Well we have been having a boring time. Brandon is still feeling the effects of Accutane. His poor lips are so chapped, and his face is very dry. It is peeling like a sunburn. Poor little baby. He started to eat last night. Not alot but I will take it. Hopefully the appetite starts up again. He is excited about Monday. We all are. Monday is the day he gets his Broviac out and his Port put in. No more dressing changes. I talked to Pam about that yesterday. She is awesome. That is what got Brandon to eat some last night when I told him. I also told him if he doesn't eat they won't do it. But anyway. He goes in Monday for same day surgery, then we go home to return on Tuesday for the next step of treatment. Hopefully all goes well with this one as it did last time. It is a different medicine then last time, but he seems to take this stuff pretty well.

Shawna is doing well, she was starting to feel sick. But she took meds right away and it seemed to work. Shay is doing good, school is getting better for him. Matt is still going out with Cris, she is such a nice girl. Shawna feels like she has a big sister now. Craig and I continue to work and try to be as normal as we can be. Well better go for now. I will update more later. Hope everyone has a wonderful weekend.
Jamie

Wednesday, February 2, 2005 5:39 AM CST

Hi Everyone,
We had a couple of rocky days. Brandon was doing so well the last couple of weeks, that when he started to complain about feeling sick I got so scared. I guess it is the Accutane he is on that made him feel so bad. Yesterday he started to feel better. Thank God. I don't want anymore hospital stays then we need. He will probably end up with the tube back in his nose for feeds. He's not eating alot. I picked him up last night and could tell he lost weight. I hope once hes off the Accutane he will feel better and start eating again. I will have to beg the Docs to give him a chance.

We still haven't heard a definate date for the Mediport replacement. But after Monday nights dressing change I hope it is real soon. He skin is so sensitive right now. I feel absolutely horrible when I have to change it. But soon it will be gone.

We go back in the hospital on Monday for 5 days and then again the following Monday for 5 days. It will be so much fun. Yeah right. I am feeling a little down today. But I will have to get over it.

Craig, Matt, Shawna, Shay are all doing well. Shay is finally starting to bring up his math grade. Shawna continues to do well. Matt got Cs on his report card. I told him no more girls. He used to pull Bs. Well I know everything could and has been worse. Gotta go.

Jamie

Monday, January 31, 2005 5:13 AM CST

Hi Everyone,
Not alot has happened since my last entry. Brandon's broviac will be in for a couple more weeks. Pam was unable to get him in for the surgery on the 4th. Thats okay, she will get him in after his next treatment.

Matt and his girlfriend Crissy came up this weekend. We had such a good time with them. We went shopping for sneakers, socks, and we looked at some clothes but didn't really find anything. I was amazed Shawna, Crissy, and I all went into a clothing store and came out with nothing not one of us bought anything. It was amazing!!!

Shay went to his friends house overnight friday night till saturday afternoon. So he didn't go with us. Craig got off work early on saturday.

Shawna found out one of Matt's friends likes her. So she was continually asking me if he asks her out can she go??
I am not sure about that one.

Well that's about all I got. Like I said nothing really exciting happened. Will update later.

jamie

PS There is a basket bingo and a pig roast coming up!!!
details soon to follow

Wednesday, January 26, 2005 5:23 AM CST

Hi everyone,
Brandon continues to do well. We had to go to HMC for counts on Monday. They all came back pretty good. Plateletts were still a little low, but not to low. Now for some exciting news. Brandon has made a decision, which pleases all of us. He has decided to get his Broviac out. He will be getting a port in, but the port allows his to be able to go swimming, take showers and bathes alittle easier. He will be able to go to school with the port. He will also need to have a tiny catheter put in his leg for shots. That only has to be put in for the 2 weeks he gets the shot. So we are very excited about that. Hopefully Pam our super nurse can get it scheduled for Feb. 4th. I am sure she will she is amazing.

Next bit of exciting news is Make a Wish reconsidered their decision about Matt and said he can go with us. The only thing is we have to pay for his airfare. The cool thing is when she makes our reservations she is going to tell them to save a seat on our flight for Matt and I will have to call right away. That made us very excited.

I am also going to go back to work full time. My mom will be coming to stay with Brandon on the days Craig works. The only time I will not be able to work normally is when Brandon is in the hospital. Well I better go and see if the computer system is up and running yet. Just wanted to drop a note letting you all know how things are going.
Jamie

Friday, January 21, 2005 4:16 PM CST

HI all,
We came home today. Thank God. We are so glad to be home. Brandon came through the first leg of his treatment almost pain free. He still has some belly pain, but overall brandon is doing fine. On Wednesday, I got sick, I thought I ate something bad, but was very wrong according to Dr. Powell. I had a nasty stomach virus that was going around. I certainly hope Brandon doesn't get it. Cause it sucked. I still feel alittle sick, but compared to everything Brandon has been through i guess my little belly ache was nothing. We will be going back to HMC on Monday. For the next meds he needs. That med is a 14 day medicine.

We got the approval for Brandon's make a wish trip. The only problem is that Matt wasn't approved for the trip. So we will be paying for him. Which kinda sucks, they told us he wasn't approved cause he doesn't live in our house. But what are you gonna do. Enough complaining, I can't wait for the snow to come. I guess the last forcast I heard was 14 inches by Sunday. The way the kids are acting I believe it is coming. Well better go, I have been rambling for too long now.
Bye for now.
Jamie

Tuesday, January 18, 2005 5:47 AM CST

HI Everyone,
Now I have stuff to update. We started the first part of Brandon's new treatment on Friday. He has to have a 2 hour IV infusion everyday for 14 days. We had to do the first one in the hospital on Friday. He took it like a champ. Even after the 2 hour infusion turned into about 4 hours. The amount of fluid wouldn't work with the infusion pumps they have. We had to try 4 different pumps before we found one that worked. We also had to do this over the weekend with the same problem. The pump the home health care co. sent out didn't work. So the nurse had to push 10cc's of fluid in over 2 hours. Sunday she brought out another small pump it is so cute. That one worked. Thank God.

So anyway, he had his first dose of the Antibody yesterday. It involves staying in the hospital for 4 days, but we can deal with it. He took it like a champ. All the side effects he should have had did not rear their ugly faces. He was suppose to have pain or tingling sensations, that's why the hooked him up to morphine. I guess the morphine did its job. Cause the only pain he had was in his stomach, that to is normal. Brandon is such a strong brave kid. During his treatment he slept most of the time sleeping, but we did get in some game playing. HE also go a visit from a few of the Hershey Bears. They autographed a team photo and gave him a Teenage Mutant Ninga Turtle remote control car. He loved that. I guess I will go for now. I am at work, Daddy pulled the first night. I have the rest of the week. I will talk to you all later.

Jamie

Sunday, January 9, 2005 4:30 PM CST

HI Everyone,
First off I want to let you all know Brandon's scans all came back negative. We haven't found out the results of the bone marrow yet, but no news is good news.
Also, we had to make a decision about signing up for a new study that has just been approved at HMC. The study includes the regular form of treatment at this stage of our fight or another form of antibody treatment. We signed up for the study, but we are waiting to find out which treatment Brandon will get. I struggled with it for a little while. Because there are some hospital stays involved, but we can deal with them. They are short visits and its not like chemo was. So they shouldn't be too bad. I will let you all know when we find out which way it is going to go for him.
He is very excited about go on his Make A Wish trip. We are hopefully going to sunny California. Also we are planning a trip for Disney in the fall, those are the only things he wants to talk about.
As for the rest of the kids, Shawna is doing great as usual. Her and her friends decided to send the money they made from the dance to a little boy in Austraila, who needs to get to the states by the end of this month. I am very proud of their decision. I know the money for research is important, but they all three cried when they read Dylan's story. Shay is going snow tubing with school tomorrow. He's very excited. He is doing alot better in school. Matt well since he started driving I don't see him to much. But I guess that should be excepted of a 17 year old boy.

Now I have one more thing to say. I did two things I haven't done in a long time today. First was to clean my house. I know that doesn't sound all that exciting, but you haven't seen my house. Second was to spend time all alone today, by myself. It was short lived cause shawna needed picked up. But the hour I had was wonderful. I could watch tv what ever i wanted. It was wonderful I would recommend it to anyone.
Duncan is doing very well. Well thats about all for now. I will let you all know the bone marrow results and which way the study is going to go for brandon.
Kim, by the way I am very proud of you going to the docs. haha Love ya girl.
Jamie

Tuesday, January 4, 2005 6:29 AM CST

Good Morning,
Here I am again with a little story on how smart my youngest child is. Here goes. Brandon had to get a CT scan yesterday. So he wasn't supposed to eat after 7am. Craig being the great dad he is got up made him a huge breakfast at 6:30. Brandon ate very slow so he finally finished his breakfast at 7:30, that is not a real big deal since we always have to wait at least 1/2 hour after his scheduled time. Anyway, Craig and Brandon were doing some things around the house to keep his mind off food. Brandon said he was tired and wanted to watch cartoons. Craig told him okay and he continued doing what he(Craig) was doing. Craig came into the livingroom where Brandon was at about 9:30 to find him with an empty pack of Tic Tacs. Brandon told Craig he knows its soon time he can't eat anymore so he decided to eat this pack of Tic Tacs. Craig called me, I called Hershey to make sure the tic tacs wouldn't affect the CT scan, they said it wouldn't so they went up to have the test done. The radiologist told Brandon his breath smelled great and his new name in radiology is Tic Tac. I don't know if you all will get a kick out this little story, but I thought it was hilarious. Cause I was at work and I could see Brandon doing this. Other then the Tic Tac incident all is well. We haven't gotten any results from the rest of his tests yet, so I really have nothing more to add. As soon as we find out I will post all results.
Please keep praying for clean scans.
Jamie

Monday, January 3, 2005 6:30 AM CST

Happy New Year Everyone,
We got the results of the bone scan on Thursday. They are negative YYYYYEEEEEEAAAAAAAHHHHHH!!!!!!!!! Now we have to wait for the MIBG scan, the CT scan, and the Bone Marrow Biopsy results. As soon as we find out we will let you all know.

New Years was great. Shawna's party for cancer research was a success. The girls raised over $400 they are so proud of themselves. I am so happy for them. They did a wonderful job. They are planning to do this again. I can't wait (yeah right) in a room with a bunch of teenagers not gonna happen to soon. We had a good time though. Thank you to all who helped with it. Crys, Mom Mom, Joy, Kelly, and Carrie. Adam thanks for DJing even if the kids have a different taste in music then the rest of us. Cody you did a good job too.

Anyway there really isn't alot to report. Brandon is doing well he is getting his hair back. He wears a hat alot so no one can rub the hair off his head. Shawna, Shay and Matt are all ready to return to school today. I am so glad to be back at work. Well not really on the last two statements, we all grew accustom to sleeping in.
Thats about it for now. Thank you all again for your love, prayers and support.

Pig roast coming up May 14th. At the Reinholds VFW. Tracy Ruth is starting the planning. We will have more details soon. Hopefully we can donate the money to the 4 diamonds fund. I pray we won't need it then. Well better go now gotta work.

Hope everyone has a happy and safe and healthy New Year.

Monday, December 27, 2004 5:48 AM CST

Good morning all,
I am so sorry for the lack of updates over the last few days, weeks. I will fill you all in starting with last Wednesday. Craig Brandon's daddy, was in a car accident on his way to work. He was the baloney between two pieces of bread. Thank you God for letting him walk away from the accident with some minor bruises and bumps. I had to go get him at the accident which set me back several hours. We did get radiation over with on Wednesday, just not as early as we thought. He had to go at 2 instead of his usual 9 am visit. But it is finished. We stopped in at clinic to wish everyone a Merry Christmas. To find out Brandon must get his scans done this week here. Which sucks cause I thought I could possibly get a whole week's worth of work in but i'm not. Which really upsets me! Yes thats sarcasism. No seriously it does.
Anyway Christmas was wonderful. All of the kids had an exceptional year. Even the dogs. I think we have a toy store in our house now. No infact i know we have a toy store in our house.

I am sitting at work right now waiting for the computer system to come up so I can start working, so I thought i would update everyone. Anyway back to Christmas. I had a meltdown Christmas night. I hate nighttime too much time to think. I kept thinking about The Mease family, and all the other Angel parents I met. I can't even imagine how they were feeling Christmas. Or for that matter anytime. I was doing okay during the day except for a couple of times, but nighttime just sucks. We found out the pastor of Craig's parents church, who sat with us during Brandon's surgery and stayed up praying for him all night when Brandon was so sick, his son has a brain tumor. This is not fair, Cancer sucks.
Well enough depression for one day. Well hopefully I can wade my way through the Christmas mess to update alittle more later. I better start working now.

OH one more thing. Anyone living in the Lancaster area not doing anything on New Years Eve. Shawna and her friends are having a New Years Eve dance at the Denver Fire Co. It is a teen dance, but if you have 5 dollars they will take it. The money they raise is going to be donated to the Neuroblastoma research fund. I am so proud of them. The dance starts at 6pm and is over at 10pm. No drinking of course. I know not alot of fun, but they are only teenagers.
HOpe to see you there.
Love to you all,
Jamie

Tuesday, December 21, 2004 5:44 AM CST

Hi everyone,
Well I'm at work now and the computer system I use is down so I decided to update this.
First of all only 2 more radiations to go. Thank God. Brandon is so excited for Christmas. He keeps asking how many more days till Santa? I keep telling him not enough. But he is really excited. I can't wait.

We have some good news. Duncan will be home this week before Christmas. HOOOOOOORAAAAAAAAAAAAAAYYYYYYYYYYY!!!!!!!
We are so happy for them. Brandon ran around the house last night singing Duncan's coming home, Duncan's coming home.

Well that's about all for now.
Talk to you all soon.
MERRY CHRISTMAS

Friday, December 17, 2004 7:41 AM CST

HI all,
Well its been a few days again. With the holidays right around the corner (7 days away) Brandon keeps reminding me, we are awfully busy. I want to thank all the people who responded to Brandon's newspaper article. Like I've stated before there really are people out there who care.

Radiation is going well. Brandon has only 3 treatments left. He has occasionally had an upset stomach. But other then that he is doing well. I am stuck at work right now. So I thought I would update the page. There still really isn't alot to update on except that everyone is doing really well.

Matt continues to work and drive. That is about all he does. He is doing well in school, can't ask for more then that.

Shawna is also doing very well in school. She had a band concert last night. She did wonderful.

Shay is doing well in school now that we are at home to keep on top of the homework.

The kids are great. Brandon wants so bad to go to school. I think I might have to go against the Docs and send him sooner. Not sure yet. He wants to get on the bus with his cousin Christopher. We will have to see.

Daddy is doing good, he works and plays xbox with Brandon, now that hunting is over he doesn't know what to do with himself. So he bothers me alot. I guess that's okay though.

Me well I still have my good days and my bad days. I guess that will continue on forever now. Today is not such a good day. Kim's friend lost her son yesterday, I just found out and now i am kinda in a funk. Just thinking this %^&^(&^*^ disease sucks. I hate it. Cancer sucks. I hate that too. I have to do something to make this horrible monster go away. I first must get my boy well. Then I will start the battle of raising money for NB research first, and childhood cancer too.
Well I better go, I feel a break coming on.
Bye for now.

MERRY CHRISTMAS

Monday, December 13, 2004 5:56 PM CST

Hi all,
This weekend was such a suprise. Brandon's story was in the paper Saturday. since then we have had so many phone calls and so much support from the community. I was beginning to lose faith in the human race, but this has changed the way I have been thinking. I can't believe the huge hearts people have. We have had people calling to wish us well and to let us know Brandon is in their prayers to people wanting to help financially. It is so wonderful to talk to these people. But anyway you are all wondering how Brandon is doing I guess.

He is doing wonderful. He had his 5th round of radiation today. He took his buddy Christopher along. Chris talked to Brandon while he was getting his radiation and Brandon absolutely loved it. He did great. I have to take him tomorrow, then its back to work for me. YEAH!!!! well I better go I have somethings I need to get done yet. Thanks for checking in on us. Love to you all and Merry Christmas.

Wednesday, December 8, 2004 6:25 PM CST

Hello,
Brandon had his second treatment today. He did wonderful. He stayed awake for his treatment which took about 5 min. I was and am still very proud of him. He had to stay in the room by himself. He couldn't see us but we could see and talk to him. He tells me he's going to stay awake again tomorrow. I was kinda worried when i seen how thick the door separating him and me was. It was probably about a foot thick. I really don't have alot to say tonight except he is eating well.

Duncan got his cells back today, I haven't talked to his mom yet but when i seen him today he was in pretty good spirits. That was before transplant though.

I was so happy for our other friend Cody today. He had to get a haircut. I just thought that was cool. I guess we all take haircuts for granted. We also seen another one of our friends Kaitelyn, well her mom anyway. Kaitelyn is doing great her surgery was a success, she still has some chemos to go through. One other thing lets all pray that 7 west at hershey med center is empty by Dec 24th. That would be the best Christmas present ever.

Tuesday, December 7, 2004 2:54 PM CST

Hi everyone,
Brandon underwent his first actual radiation treatment today. He did wonderful except for coming out of anestesia(or however you spell it). He likes to beat me up afterwards. The boy packs a good right hook. Guess we taught him right. Anyway, I want to thank Nick Snow for writing to Brandon and letting him know how your battle went. I have read many of the emails your mom sent to the list about you and she is very PROUD of you. I am proud of you to, for taking the time to give our family the hope to have faith in the struggle we are going through right now. Thanks Nick.

There will be an upcoming story in the newspaper for our family soon. When i find out a date i will let you all know. Also anyone interested in a teen dance for New Years eve there will be one for Neuroblastoma research that Shawna and some of her friends are putting on at the Denver Fire Co. I will give more details as the date approaches. I do know the tickets are 5 dollars apiece, and the girls are working very hard on this. It isn't just a teen dance, anyone is welcome, but just remember these are teenage girls setting everything up so the music is up to them. I only have one song they must play.

Well I'm gonna go for now I will talk to you all later. ONce again thanks for everything.
Jamie

Friday, December 3, 2004 1:17 PM CST

HI all. We went to see Dr. Comito today. She is very pleased with Brandon's returning appetite. I know its returning because last night he was begging me to go to the store for cheese hotdogs. At 10pm this was so of course my answer was no, but I will get you Burger King in the morning before we go to the hospital. Which we did and he ate it all. Anyway, we will be getting a kidney test done on Monday to see how his kidneys are functioning. Hopefully all goes well. Then radiation starts on Tuesday and will continue every weekday until Dec 22. What fun. Well atleast we are at home. Well thats all for now. I have to play the xbox now.
Jamie

Wednesday, December 1, 2004 5:41 PM CST

Today we found out Brandon has to go for his first radiation setup appointment tomorrow. He will be put to sleep because he must remain very still for the first 2 sessions. After the first 2 sessions he should be able to stay awake. The remaining sessions shouldn't last near as long as the first 2. He is scared, but I would be too. I have been trying to explain the procedure to him in a way he would understand. So that is the newest update I have. He will be done with all his radation treatments by Dec 22. That is if all goes well. Which it will. He has started eating, so I don't think he will have the tube in for real long. Which makes him very happy. I guess that is all for now.
Jamie

Tuesday, November 30, 2004 9:12 AM CST

Yesterday we went to the Doctor to find out Brandon needed to have the NG tube feeding tube put back in. He was not happy. But he's dealing with it. Dr. Comito also put him back on his steroid to stimulate his appetite. I don't expect him to have the tube in very long. I hope he doesn't anyway. About radiation. I know about as much as I knew on Sunday when I updated last. We still don't know when he will start, but the Dr. there assured us he would be finished by Christmas. So once again my holiday should be wonderful. As long as he doesn't get sick and end up in the hospital. But if he does I guess we will have Christmas there.

Our buddy Duncan is going in today to start his last round of Chemotherapy and then for his stem cell transplant next Wednesday. Please all pray for his family and for Duncan's speedy recovery. It sucks the kids have to go through this but it would suck even more if he had to spend Christmas in the hospital. Well better go waiting for Hershey to call about radiation. Thanks for everything everyone. Love you all.

Sunday, November 28, 2004 8:02 PM CST

HI Everyone,
Sorry about taking so long to update again. I have been very busy. Thanksgiving was wonderful. I got everything i wished for. I had all of my children home with me. It was the best Thanksgiving ever. We had turkey and all the trimmings. Thank you to Melisa, Rebecca, Brenda and Michele at work. The food was wonderful. Also we would like to send a HUGE thank you to the Nurses at Hershey. We will not have to go grocery shopping for a month. Thank you.

Aunt Kath, we read your message a little to late and gave the dogs to much turkey. You were right dog turkey farts are the absolute worst. We were gagging.

To Kim and Tracy and all those who bought subs Thank you. It was a huge success. We are hoping Christmas will be as great as Thanksgiving with all of our kids at home.

I hope all of you who have been praying for Brandon could throw out a couple for Duncan, Brandon's friend. Duncan goes in for his stem cell transplant on Tuesday. He will actually get his cells back on Dec. 8th. Getting them that late could result in him being in the hospital for Christmas. So we all need to pray for Duncan really hard to get him well so his mom gets the best Christmas present ever. I know she will appreciate every one of the prayers, so please send them to the big man upstairs. Spread it to all your friends and family, Duncan really means alot to our family, and I know you all mean alot to us too and would help in anyway you can.

Brandon has a Drs appointment tomorrow and also a consult with the radiologist. We should find out when his radiation therapy starts. I will update you all tomorrow I hope.
Well gotta go my boy wants to watch Elf.

Monday, November 22, 2004 8:00 PM CST

Hello Everyone,
I know it has been awhile since my last update. We have been enjoying being at home. Thanksgiving will be absolutely wonderful this year. We are truely blessed. Since Brandon got sick we have met some wonderful people. All of them are in our prayers. Well anyway, last Thursday Brandon had to go for counts and needed a dose of plateletts. He didn't have to stay in the hospital to get them. He thought he would have to, but he didn't. We have to go for counts tomorrow morning again hopefully it will be a very short trip and he won't need anything. He is still not eating as much as he should be, but that will come in time.

I want to thank Tracy Ruth, Michele Burkholder, and My sister Joy Eager for the Roller Skating Party they put together to help out our family. They raised quite a bit of money which will come in handy in the next couple of weeks. They did an absolutely wonderful job. I was there and they had everything set up perfectly. The DJ was awsome, food was perfect and the whole evening with raffle tickets and the door prize was a huge success. THANK YOU ALL FOR EVERYTHING YOU 3 DID. Also thank you to everyone who came out and made it a huge success.

Shawna and her friend Breanna are planning a teen dance, hopefully i can post details soon.

Well thats about all I have for now. I promise i will be better at updating. Like i stated before we have just been enjoying the time spent at home as a family.
Love and prayers to you all.
Jamie

Tuesday, November 16, 2004 5:20 PM CST

Hi Everyone,
We are so happy to be home. We all actually slept in the same house last night. Hopefully that continues forever. I am so glad to be home. I have to return to work for the next 3 days. Which i am so glad about. Then I will be home for the next 3 weeks. That will be fun. Brandon continues to do well, he has thrown up a few times but other then that he is fine. He still sleeps alot, but i can deal with that. He has to go up to Hershey for blood counts on Thursday, he may need plateletts, but I don't really think he will. We will have to start Radiation soon. That is all outpatient though, thank god. Well I think I am going to go for now. I will update more as it comes in.
Thanks for everything everyone.

I hope you all didn't forget about the skating party on Friday for Brandon. It is at the Starlight Skating rink in Vinemont. If anyone needs directions please let me know. I think i will be there with Shawna and Shay. It starts at 5 and is over at 9. Food is included in the price of the ticket which is 5 dollars. Skate rental is not included its 2 dollars, and no roller blades. There is going to be raffles, also a door prize, coloring contest for the little kids. The door prize is a DVD player. Hope to see you all there!!!
Jamie

Sunday, November 14, 2004 9:18 PM CST

Day +19 is almost over. Brandon and I cannot sleep, as I am sure not to much sleeping is being done at our house tonight. I went home yesterday and finished up the cleaning. So Tomorrow we can GO HOME YIPPPPPPEEEEEE!!!!!!!!!!!!! Need i say anymore tonight. I will update everything from home tomorrow.

We are so excited!!!!!!!!!!!!!!!!!!

Jamie

Thursday, November 11, 2004 4:49 PM CST

Day +17. It seems so long ago, that this transplant was done. Brandon still continues to do well. His counts have stablized, which is good. He is down to only receiving morphine by IV and TPN too. Tomorrow the doctor is going to switch the morphine to an oral methadone. Which means we are really on our way out of here. I am so happy. All his antibiotics are being given orally. The TPN is something we can do at home. And i think once we get home he wont need that too much, cause I am going to be cooking up a storm. I am so excited to go home, but im kinda scared too. But i know they wouldn't send him home if he wasnt ready. I know we are ready to be home with all the kids and the dogs. It will be so weird.

As far as the other kids they are doing well. Shay and Shawna tell me nothing is going on in school right now. I don't know if thats the truth or they just wanna wait till i get home to tell me. I know them if it was really serious they would tell me. But if i have to take care of it again i will.

Well i really dont have alot to say tonight, we havent had anything exciting going on right now. Not that thats a bad thing. I think it is kinda wonderful right now.
I want to thank all the people who have been there for us through all of this. The emotional support we have received has been wonderful. Hopefully soon we will be able to live our lives to help others like us, until this horrible disease is gone.

One more thing, I know everyone knows what the Lance Armstrong bracelet is, does anyone know where we could get some made for Neuroblastoma to raise money for research?? If you do please let me know.

Thanks again
Jamie

Wednesday, November 10, 2004 10:17 AM CST

Today is day +15. Brandon is continuing to do very well. We have Dr. Comito now, she is great too. She keeps telling us how well Brandon is doing. She is cutting back his one antibotic in half today to ween him off it. Another she is going to make it orally, he will have to go home on that one. The morphine drip continues to be lowered everyday. As long as he takes his meds by mouth he will probably not need his feeding tube back. I want to talk to the doc today about how many more months treatment is going to last. We have decisions to make about his Make A Wish trip. I also have to figure out what job i want to bid on at work. To see if I have a chance at one or not. I really am not sure what i wanna do. But enough about that.

I went to the school yesterday and spoke to the sixth grade principal. He wasn't aware anything was going on. I set him straight on that. I told him about everything going on with Shay. He was gonna call the 7 boys in his office along with Shay. I told him as long as i was with him. He wasn't happy about that. But too bad. I was also told he wouldn't be able to get it together today, but he could set something up later in the week. I couldn't but i told him as long as Shawna was with shay then he could. Well he called all the kids in separately and 2 of them admitted to what they were doing and got in school suspension, but the little weasle who caused the most trouble seemed to get off scott free again. I told the principal that if that kid bugs shay again Shay has permission to take care of him in his own way. I also told him if Shay can't take care of him then his big brother will take care of it for him. I also told him Shawna will end up getting suspended if Shay keeps getting the crap hes getting. Shawna will take care of it for him. Shay's friend Devin whos in shawnas grade told the other kids to leave Shay alone or he will be taking care of them. I know Devin, he doesn't care if he gets in trouble or not. So things went pretty well yesterday. I am kinda wondering what kind of crap he got today. If he got any from the one kid especially i will have to get it taken care of in my own way.

Shawna wants me to let her take care of her problem by herself, so i am letting her. But if she needs me i will not hesitate to take care of it. We will all be home soon so i can take care of these things alittle easier. Well enough about all that. Thanks for all the prayers and best wishes for all 4 of my kids. I will write more later.
Jamie

Monday, November 8, 2004 4:30 PM CST

Today is day +13. Brandon is doing very well, his counts continue to rise. If things keep going the way they are now he will probably be out of here on Monday November 15th. I can deal with that.

What i can't deal with is how cruel kids can be, and how little the schools care about that. Shay has been having problems with the same kids since 3rd grade. These kids are constantly picking on him, calling him names, and pushing him around. When he does nothing and fills out the papers hes supposed to for school they just file them. Some "no bullying policy" I guess it just depends on the kid. When he used to defend himself in elementary school they sure weren't afraid to call me and tell me hes such a trouble maker. Now he feels like he should just leave or kill himself. So now i have to go to the school tomorrow and raise some hell. Sorry about the language, but i am mad. I am so sick of this crap. Shawna is getting the same crap. Being told her brother is going to die. I think its pretty ignorant of these kids, and their parents are even worse for raising kids with no compassion and respect for someone elses hardship. We never asked for anyone's pity through this whole thing. Shawna, Shay and Matt never asked for pity either. I just think it sucks to have other kids not care. I hope and pray nothing like this happens to someone close to them. Because it isn't fun. I just know that it won't take much for me to snap. I will have to double up on the meds before i go in. I don't think i will be well liked when i leave there tomorrow. And for there sake i sure hope nothing happens to any of my children. I guess the no bullying policy only applies to the rich kids. And whats funny is its the rich kids doing the bullying.

ON a different note, Matt got his drivers lisence last Wed. He was so excited. He is ready for his car to be finished. It should be real soon. He already got insurance and tags. All he needs is his carbuerator adjusted and the inspection done.

Well im sure i bored you all enough, but thanks for letting me vent alittle.
Jamie

Saturday, November 6, 2004 8:16 PM CST

We are finishing up day +11. Brandon's ANC soared from 396 yesterday to 2500 today!!! He will get one more dose of GCSF tonight which should put him up over 3000. That is wonderful it means he can walk the halls if he wants to, with a mask on.

He had to have his abdomen tapped again today they took out a liter and a half of fluid from his poor little belly. His belly seems to be holding its own now, but i dont want to ginx it so enough about that. He is having a problem with getting enough oxygen in his blood so he has a constant flow by of oxygen. He hates it, but it has to be that way so we can get him to where he can go home. His oxygen intake and his belly are pretty much the only things we have to worry about anymore. He had a pretty good nose bleed last night so tonight we are going to have an uneventful night. That is my goal, but if it happens well thats another thing.

I get to go home tomorrow to go to work on Monday and Tuesday then i have from Tuesday night till Saturday sometime here in the hospital. Hopefully we go home before that but i'm not counting on it. Well thats about all i have to say tonight. Please keep the messages coming. We really do read them. I hope to see you all at the skating party. Hopefully we are home by that time and I can come. I really appreciate all everyone is doing for us.

Duncan went home today, but hes still alittle sick so when you say your prayers say a little one for him. Also, our newest friend Tucker is in here too. He is waiting for his white count to come up. Please pray for white cells and neutriphils for him. He is so cute.
Bye for now.

Thursday, November 4, 2004 4:21 PM CST

Today is day +9, Dr. Lucas was right counts would start to go up on day +8 or +9. His white count is up to .4 horrrrrraaaaaaayyyyyy. Yeah i know its only .3 but in this business what seems a small amount to you is a big deal to us. Brandon is still having problems with his abdomen retaining fluid. Yesterday they drained a liter out of his belly and today it doesn't look like they touched him yesterday. He will probably have to be tapped again tomorrow or over the weekend. He has a little fluid on his lung, the docs are taking every possible precaution they can. What we don't want to happen is him being sent to the ICU. I'm sure they are good over there, but I love our nurses over here. They are the absolute best. Heather we miss you!!!

I found out something very sad today, but it made me feel good too. I know what i am going to write everyone will think im nuts to have felt good by this but you may understand what i mean too.
I found out Brandon's nurse tonight had lost a son to Luekemia(sorry if spelled wrong). She told me tonight that she can totally relate to how frustrating this really can be. I didn't know about her son, and when she told me i just wanted to cry. She is such a strong person, because she is here for us, the parents fighting now. I felt good because she felt comfortable enough with me to tell me about her boy. She has two little girls at home too. Anyway, i just thought i would share that with everyone so you can see how incredible the nurses are here on 7 west.

Brandon still continues to struggle with is latest hurdle, but he is still fighting with us, if we do something not to his liking he lets us know. I think everyone knows when we do something wrong haha. Duncan came in on Monday night, he has the wonderful mouth sores, which extend down into his stomach. So when your saying your prayers for Brandon send one for our buddy Duncan.

Tuesday, November 2, 2004 2:05 PM CST

Hi everyone,
Today wasn't a very good day. Brandon is in alot of pain. Whenever he moves he sounds like a little old man grunting and groaning. He blames himself for having to be here and all the pain. I keep telling him its not his fault, it is the monster inside of him. I am going home tonight cause i have to go back to work tomorrow till friday. I want to go home to be with the other kids, but i want to stay with Brandon. His white count is still .1, but he took his red blood cells from 9 to 10 all by himself, so i guess thats a good sign that this should be over soon. I will update more tomorrow or maybe even tonight from my home computer. Bye for now.
Jamie

Sunday, October 31, 2004 9:19 PM CST

Today is day +5 things should start looking up here. Atleast we hope things look up. Brandon had a couple of rough days. I didn't update yesterday cause i went home. Which felt wonderful. We have been dealing with Brandon throwing up the past couple of nights. He was in so much pain the last couple of days too. It even hurt him when we would pick him up to put him in bed. He is usually a cuddler, but not the last couple of days. That really sucks, especially when there is nothing else to do. But anyway I think he looks alot better today then i have seen him look in about a week. So maybe he will make his deadline of 21 days yet. I doubt it, but maybe.

I am just glad we live so close to the hospital cause if we lived an hour away we couldn't even go home when hes released. We would have to spend a hundred days up here. That would really suck. But anyway, when we go home this time hopefully it will be the last time we have to come back to stay.

Matt, Shay and Craig went hunting on Saturday and got nothing but wet. HAHA Hopefully they don't get sick. Shawna spent the weekend at her friends house. Which kinda upset me when i went home, cause i don't get to spend much time with her. Then to top it off we got into a fight over the phone. By the time we were done on the phone we were both feeling much better. She got alot of things off her chest and I understand why she has been distant lately. She thought we were hiding things from her about Brandon. She was afraid he was going to die from the transplant. I told her everything was going the way they planned and if he was going to die we would be the ones to tell her. Her and the boys would be the first to know if we ever (which we won't) hear that news. But anyway enough about that. I will be here for the next two days so i will have updates regularly. After that i can't guarantee anything. Just kidding i will make sure your up to date. Please keep the messages coming, we enjoy reading them and hearing from you all.
Jamie

Friday, October 29, 2004 3:28 PM CDT

Today is day +3, I thought things would be looking up by now, but i was wrong. Brandon is still not feeling so well. He was having some stomach pain, and his throat is very sore. I feel so bad for him and there isn't anything i can do for him. He throw up this morning, ran a fever, and is now on another antibiotic. But I guess that is the best thing for him.
Brandon's doc now is Dr. Lucas. He is great. In my book he ranks right up there with Dr. Powell. He checks in with us atleast 3 times a day. He is great cause when he comes in in the morning he won't wake us up if he doesn't have too. What a great doc. Now the residents on the other hand they could learn alot from him. But anyway i'm just rambling right now. So i will go for now.
Talk to you later.
Jamie

Thursday, October 28, 2004 4:02 PM CDT

Hello everyone,
We are right on schedule with Brandon's progress. Dr. Lucas told us me today that Brandon is right on with where he should be. He also told me that he will probably get alot worse then he is now in the next week or so. He said he will get worse before he gets better. We are having a pretty good day here so far. He has been doing alot of sleeping, but he has been a little more awake then yesterday. I think that is a good sign. He was more awake then i was today. I have been very tired lately. I guess boredom has set in.

Brandon's white count is still at .1 Things will start looking better when that count goes up. So all we have to do is be patient. I can't wait till Saturday night I get to go home for a little while. Till Sunday. I have some things to do there. Like sleep in a real bed.

Shawna, Shay and Matt are doing pretty good. Shawna is going to spend the weekend at her friend's house this weekend, Shay and Matt are going to go hunting on Saturday. I get to spend the day here.

Well I am going to go for now. I may update later on tonight or tomorrow for sure. Hopefully i can say his counts are on the rise.
Well gotta go.
Jamie

Wednesday, October 27, 2004 5:31 PM CDT

HI Everyone,
Today has not been a good day. Brandon is on a constant morphine drip, with a button that he can push if he needs extra. His WBC is at .1, his throat hurts and all he did was sleep all day today. I was very bored. I have my puzzle almost finished. Like i said today wasnt a very good day. I really don't have alot to say right now. If anything changes i will update later tonight or tomorrow.
Gotta go.

Tuesday, October 26, 2004 10:17 PM CDT

Today was transplant day. Day 0. Brandon did excellent today during his transplant. He felt sick to his stomach. But he didn't throw up. We were told he would probably pee blood, he didn't do that either. The only thing is he has some nasty garlic breath going on. It will go away in a day or two. The stem cell transplant took about 30 min total. Dr. Lucas did the transplant. He is a great doctor. When Brandon felt sick he stopped and waited till he felt better. Brandon was kinda scared, because of all the comotion going on around him. The nurses had to have meds on hand incase he needed them. The only thing he needed was some nausea medicine. I am so glad this part is over. I want to thank everyone for all the prayers.
Now all we have to do is wait for his ANC to go up then we are homeward bound. Can't wait. We are all homesick. I want to try to have some kind of normal life soon. As normal as it will ever be. I can't wait till i have my family under one roof again.
Shawna, Shay and Matt are all glad everything went well. So far Brandon has very little mouth sores. Which is great. Hopefully it stays that way. I think God knows how rough Brandon had the mouth sores before. Hopefully they are as bad as they are going to get. Well i will be updating every night and maybe during the day cause it is my turn at the hospital. Can't say it upsets me not to be at work. Would rather be at home, but can't have everything all at one time. Wouldn't have anything to look forward too.

Well gonna go to bed now.
Love you all,
Jamie

Sunday, October 24, 2004 8:16 PM CDT

Hi everyone,
Sorry no update yesterday. When I left the hospital, i went to Shawna's band thing. Had to pay 6 bucks to watch her play. She did wonderful. I was so proud. Then i came home with every intention of getting some things done. Remember the boxes Craig brought down from the attic, well one of them was Brandon's baby clothes. Well that started the waterworks. I guess i was just physically and emotionally drained. Anyway I guess you aren't here to find out about me so heres Brandons update.
Today is day -2 and its almost over. Brandon is doing better then he was yesterday. We thought for sure he would wake up with mouth sores, but he didn't, infact his mouth looks better today.

Brandon is in better spirits today. He is just counting down the days till he can come home. I can't wait to have my whole family under one roof for hopefully good!!!
I will update the happenings of the next week. I will be at work tomorrow and Tuesday for a 1/2 day, then i am hospital bound again. Which I can't say makes me unhappy. I miss Shawna, Shay and Matt when i'm not with them, but they understand that i need to be with Brandon right now. I have some really great kids that i am very proud of.
Will write more soon.
Jamie mom to 4 strong, great kids

Friday, October 22, 2004 10:39 PM CDT

Hi everyone,
Today is day -4, well it is almost over now. We had a pretty good day. Not a whole lot happening. Brandon is sleeping quietly, both his dogs(stuffed of course), beside him in the bed. He looks so peaceful. Brandon still misses his family and his dogs, but he is getting alittle better cause daddy and shay came up again tonight. I am staying with him tonight. I am bustin out tomorrow, I am going to Shawna's band competition, after her band plays I am going to go home and enjoy some peace from beeps, nurses, docs turning lights on when we dont want them on. I will have the dogs but thats okay.

Tomorrow is Shay's birthday. God he's almost 12. I remember when he was just a baby. I feel so old. There i go again feeling sorry for myself. I guess i should go to bed now. I will write some from home tomorrow night. I will have to go back to work on Monday. That will be great. yeah right. But if Brandon needs me I will be there for him.

Kim,
Just wanted to thank you for the kind words you wrote on Michaela's page. It means alot to me to have you for a friend. I know Kay's looking down on B right now. Well i better go now. Love you girl.

Thursday, October 21, 2004 9:33 PM CDT

Hi everyone,
Today went alittle better for Brandon. He had some visitors. His Aunt Tracy, Mom Mom, Mammy and Pappy, Shawna, Shay and Daddy. He was so happy when they got here. Craig is finally starting to feel better. So I should be able to go home on Saturday to sleep in my own bed. After I watch Shawna at the Band competition. And go through boxes Craig so graciously brought down from the attic for me. Actually, we are trying to unclutter the house. yeah right good luck to us!!!!

Anyway enough about cleaning, back to Brandon. We are going to draw on the windows tomorrow. Since the sun won't come out we will make our own. We are also going to do some school work and crafts. Boy I sure am dreaming now. Must be lack of sleep. I hope i can get him to do one of the above things tomorrow.
Brandon's buddy Duncan is in the room across the hall from us, which is pretty cool. We tried walkie talkies already but they don't work that well. But they can call each other on the phone. Brandon can't go out and play with him like they usually do, but they can draw on the door windows with each other. It is good for me to have them across the hall cause i get to talk to his mom. We are both battling the same beast. It sucks!!! But she understands what i am feeling without me explaining how i feel. That feels wonderful.

I ran home today to get Shawna to bring her up and some pizza. Rambo and Roxy couldn't sniff me fast enough. I think they are smelling Brandon and missing him as much as he is missing them.
He finished one of the 3 chemos he gets today. We only have tomorrow and Saturday till 11am for chemo. Then we will have till Tuesday at around 1pm. Then he will get his cells back and we get to wait. HOpefully he doesn't get mouth sores to bad. The pain medicine is what will keep him here. So everyone keep the prayers coming, and throw one in for Duncan too. He is part of our family too. We love him and are fighting this beast for him too. Thank you everyone.
Love,
Jamie

Wednesday, October 20, 2004 10:25 PM CDT

Hello all,
Today is day -6 which means there are six more days till transplant day. Which also means I have been in the hospital with Brandon for 3 days. Not that I mind. I would rather be with him then at work any day. Brandon has been going through a major depression today he misses his dogs very much he even sleeps with his stuffed rambo and roxy dogs. I feel so bad for him. I wish I knew what to do for him. So far he has been doing everything the docs and nurses tell him to do. Which makes me very pround of him. I am going to find out what the address is here and if anyone would like to send him a card that might cheer him up.

Shay will be 12 on Saturday. I will be here, but thats okay Shay will be out hunting on Saturday. God, 12 already I remember him as a baby. Shawna has a band competition this weekend. So i will be going home on Saturday to go to that and to have a night with shawna and shay. Matt is still doing great, he is waiting patiently to take his drivers test again. That will make me worry even more. Thank God for color in a bottle. Well we have 3 days down and acording to brandon's wishes only 20 days to go.
Heather enjoy your baby girl. We miss you!! You are one of my favorite nurses here. I like them all but there are a few that stand out alittle more. You are one of them. Thanks for taking the time to write Brandon and me a message.

Everyone else, thanks again for all the prayers, please keep them coming, it helps keep our spirits up, Just knowing there is a world outside of Hershey Medical Center.
Love to all,
Jamie

Tuesday, October 19, 2004 3:11 PM CDT

Today is the first day of chemo. It began at 11am. that is the chemo started at 11am. Our day began at 8am. we were awaken by Kris and Jodi our nurses. Then Brandon had to be weighed, bathed, eat breakfast and do his mouth care. Then after we did all of that if we wanted to we could go back to sleep. Yeah right!! We were wide awake. We watched some cartoons and played video games. Which of course Brandon beat my butt. I just am not coordinated for those games. Anyway chemo started at 11am this morning. Brandon so far is doing well. He is still eating and drinking. He has been very active.

Melisa i didn't get on till around 4 today, i had to bug every person who came in to this room for a computer. Finally Jodi came through for me. I will call you at work tomorrow around 9:30 tomorrow morning. I will put a message with our phone number for up here. I will put it on extention 651. Well i better go for now. Just wanted to let everyone know where we're at right now. Please keep the messages and prayers coming. Thanks

Tuesday, October 19, 2004 3:11 PM CDT

Today is the first day of chemo. It began at 11am. that is the chemo started at 11am. Our day began at 8am. we were awaken by Kris and Jodi our nurses. Then Brandon had to be weighed, bathed, eat breakfast and do his mouth care. Then after we did all of that if we wanted to we could go back to sleep. Yeah right!! We were wide awake. We watched some cartoons and played video games. Which of course Brandon beat my butt. I just am not coordinated for those games. Anyway chemo started at 11am this morning. Brandon so far is doing well. He is still eating and drinking. He has been very active.

Melisa i didn't get on till around 4 today, i had to bug every person who came in to this room for a computer. Finally Jodi came through for me. I will call you at work tomorrow around 9:30 tomorrow morning. I will put a message with our phone number for up here. I will put it on extention 651. Well i better go for now. Just wanted to let everyone know where we're at right now. Please keep the messages and prayers coming. Thanks

Tuesday, October 19, 2004 3:11 PM CDT

Today is the first day of chemo. It began at 11am. that is the chemo started at 11am. Our day began at 8am. we were awaken by Kris and Jodi our nurses. Then Brandon had to be weighed, bathed, eat breakfast and do his mouth care. Then after we did all of that if we wanted to we could go back to sleep. Yeah right!! We were wide awake. We watched some cartoons and played video games. Which of course Brandon beat my butt. I just am not coordinated for those games. Anyway chemo started at 11am this morning. Brandon so far is doing well. He is still eating and drinking. He has been very active.

Melisa i didn't get on till around 4 today, i had to bug every person who came in to this room for a computer. Finally Jodi came through for me. I will call you at work tomorrow around 9:30 tomorrow morning. I will put a message with our phone number for up here. I will put it on extention 651. Well i better go for now. Just wanted to let everyone know where we're at right now. Please keep the messages and prayers coming. Thanks

Monday, October 18, 2004 4:46 PM CDT

We arrived and settled in today. Tomorrow starts the whole process. Brandon starts chemo at 11am tomorrow morning and will be done Sat at 11am. On Tuesday he will get his cells back. I have to get back to his room now so i will have to write more as soon as i get a computer in his room.

Saturday, October 16, 2004 7:06 PM CDT

Well it has been awhile since our last update. Not a whole lot has been going on. We got the low down on the stem cell transplant process. Brandon will have 4 days worth of chemo. This chemo will be 10 times what he's already had. He will have 3 days of rest to get the chemo out of his system. Then on Tuesday the 26th he will have his stem cells injected into him. That will be about the same time the chemo drops his counts down to zero. So it will seem like a bad day, but it is actually the best day of all. It is the day that hopefully will be the beginning of the end of treatment for Brandon. We know he has radiation and some other treatments left, but from the sounds of what his reactions could be to this treatment the rest is a piece of cake.

We go in on Monday the 18th. Brandon says he will only be in for 3 weeks. He promises he will do everything the doctors tell him so he can accomplish is plan. I just hope mom and dad can do everything the doctors tell them they need to do. Well thats all for now. We will update regularly during transplant.
Thanks everyone for your thoughts and prayers.

Sunday, October 10, 2004 3:05 PM CDT

Hi everyone,
Brandon continues to do well, we will be going to talk to Dr. Comito on Tuesday about the stem cell transplant and when we will do it. We are hoping it will be on the 18th of this month. Brandon wants to go Trick or Treating before he goes in. He won't be able to go afterwards. Him and his friend Duncan also NB warrior are going to go together.
Duncan just had his surgery and came home yesterday. His mom called me to let me know they got the pathology report and all of Duncan's tumors were benign. I am so happy for them, but at the same time i am jealous. We were told there were some live cells in Brandon's tumor. That really sucks. I have been feeling awfully guilty being jealous of their family. I really don't know how to express my feelings on this but I guess it is what it is. I will have to get over it.
When Brandon's transplant is over and we are home I will use my anger to start a fund for people in my area. I will work with my good friend Kim, whose daughter has become an Angel because of the beast. Kim is a great person she has helped me so much with everything going on. Maybe i will have to email her. But maybe not. Well I guess i better go now Brandon is hungry.
thank you to all of you for your continued support. Please sign the guest book, we like to read your messages.

Wednesday, October 6, 2004 1:33 PM CDT

Brandon had his final tests before transplant today. All went well. The results of all the other tests were pretty good. I was pleased. I will be making this the only carepage brandon has soon, so updates will be made more frequently and more in detail. I have to go for now.

Sunday, October 3, 2004 7:26 PM CDT

Hello all,
Sorry for the late update. Brandon is doing well. He had testing all week for the upcoming transplant. He still has two more to go. A bone marrow Biopsy and an echocardiogram. They will be done on Wednesday. Daddy is the lucky one to take him for them. He also had to have fluid drained from his abdomin. They removed about 1 quart of fluid. Brandon is such a little guy that it really suprised me to hear how much they took out. He is doing exceptionally well now with his eating. He is out of control, but thats alright with transplant coming up soon. I am not sure of a date for it yet, hopefully i will know tomorrow. As soon as we find out i will let you all know. Well I better go for now will be more faithful to my updates.
Jamie

Monday, September 27, 2004 7:25 AM CDT

Hi all,
We are home!!!! Brandon came home yesterday, I was gonna update last night, but i looked at my desk and after 2 weeks in the hospital the mail sure piles up. So here's the update. We left yesterday only to have to go back up for testing the rest of the week. But thank god its all outpatient. We are so glad to be home running back and forth will be just fine with me.
We have transplant testing going on this week and Wednesday next week. Hopefully everything goes well. We are going in for transplant sometime in October. So we should be home for Thanksgiving. I hope. If not for Thanksgiving then for Christmas for sure. That's the one i worry about. Not being home for. Not being able to share that with all of the kids would just break my heart. Well anyway we will cross that bridge when we get to it. All is looking well for transplant. Well i guess i better go for now, i am supposed to be working.

Saturday, September 25, 2004 8:39 PM CDT

Well we are suppose to go home tomorrow. Brandon is in such a depression I don't know what to do for him. He just wants to go home. I wish the doctors would understand if he goes home he will feel so much better. He hasn't talked to anyone but me and daddy for two days now. He just cries sometimes. He looks so sad. I cannot wait till i can take him home. His friends came up to visit him today, and we went down to the playground. They played with him for a little while, he was smiling and almost the happy brandon, but then they ditched him to play with someone else. So my baby went back into the depression he was in before they got here. I don't know what else to do for him except love him and be here for him when he needs me. We will be coming in soon for stem cell transplant and i would really like to have him spend sometime at home. I don't understand how these docs don't understand that sometimes kids need to have the best medicine, being in their own home and with their family, sleeping in their own bed. I would love to see any one of the doctors who tell me he needs to eat and drink more do what they are trying to make brandon do after they are in the hospital for 2 weeks away from their family. I bet they would do the same thing. Heck i have been here since friday I dont want to eat or drink either. Are they going to admit me for not doing what they want brandon to do? I keep telling them he will be fine if he went home. Well i guess i will let you all go I guess i am just feeling sorry for myself and my son. Thanks for listening.

Sunday, September 19, 2004 6:57 PM CDT

Sorry it took so long for me to update. Brandon was battling typhlitis(sorry about spelling). His belly was so bloated that it hurt me to even look at it. He is finally starting to get better. His counts are going up, which will make his infection go away quicker. We are still battling the fevers, but there again when the counts go up, fever goes down. We had a dance last night for him, and raised over 3000 dollars. That will definately help us. We had a great time. Craig and I actually had a night out together. That was great. WEll i will try to be a better updater in the future. Sorry for the lack of information. Well thanks for checking in.

Monday, September 13, 2004 8:45 PM CDT

We had a pretty eventful week until this weekend. Brandon ended up back in the hospital. With high fevers, low blood pressure. He is finally stable after 1 1/2 units of blood, 5 bags of saline to hydrate him and a little oxygen to help him breath. The fever is holding right around 100, i will take that anyday over 106.9. So he is doing much better. I will be updating alot more in the next few days. Please keep him in your prayers, and if you could add Tucker, his parents just found out he relapsed.
Gotta go to bed, have to start working early tomorrow

Sunday, September 5, 2004 5:55 PM CDT

We came home yesterday. Brandon and i enjoyed a quiet evening at home alone. we watched movies and enjoyed the quiet. Tonight we are going to do pretty much the same thing except his cousin Christopher is spending the night. We have a new movie. The Three Musketeers (disney) So we are going to pretend we are at a movie theater with popcorn and everything. Well gotta go do laundry yeah!!!

Thursday, September 2, 2004 11:21 AM CDT

Hello everyone,
Brandon is on his second day of chemo and doing well, he is sleeping now after a night of getting up every two hrs to go to the bathroom. This will be short cause i dont have alot to report. Gotta go before he realizes i am gone.

Talk to you later tonight

Wednesday, September 1, 2004 2:47 PM CDT

Hello everyone,
Brandon has been admitted today for his last round of chemo before transplant time. I will have to make this short he is waiting for me to bring his shocktarts back. Brandon's kindergarten teacher will be coming to our house to tutor him till he is well enough to go to school.
The other kids are having a great time in school so far. Well better get back to my boy.
Thanks for the love, prayers and support
Jamie

Monday, August 30, 2004 7:47 PM CDT

Hello all,
Brandon had a bit of a tummy ache today. But he feels better now. He is resting comfortly. I on the other hand, am not fairing to well. I am having a very hard time dealing with the fact that Brandon will not be going to Kindergarten. I just keep thinking about how i seen my other 3 children board the yellow bus for the first time. It was such a wonderful feeling. Them dressed in their new clothes, new shoes, and new backpack that was as big as them. I won't get to see that with Brandon. Not for Kindergarten anyway. He is going to be tutored at home, but it just isn't the same. I feel so selfish wanting to see him get on the bus. Well i can't keep writing this or i will be crying any minute now. Gotta go will update more tomorrow.

Monday, August 30, 2004 8:04 AM CDT

Hello all,
We had a great time at Hershey Park. Brandon went on rides, made mommy go on the Frog hopper. TWICE. He loves that ride. He had such a good time. It was great to see him smile so much. I took many pictures of him and will post them if i can figure out how to do it. Brandon continues to do well, his next chemo is about 2 wks away yet so i am sure he will continue to get stronger and stronger. After chemo, about 2 wks he will have to have tests done for the stem cell transplant. I hope everything stays on track. If it does we should be home for Thanksgiving, and Christmas. That would be wonderful. Well gotta go. Will up date as soon as i can.
Thanks for all the love and prayers coming our way.

Saturday, August 28, 2004 8:55 PM CDT

Hello everyone,
There is not alot to report. Brandon continues to do well. He is playing xbox with daddy right now. He is really excited about going to Hershey Park tomorrow. We have my company picnic up there. I just hope the weather holds out for him. We have chemo on the 10th of september. That will be the last one till transplant time. I hope we can stay out of the hospital from the last day of chemo till transplant time. My boy is so brave, he has gone through so much it isn't even funny. I am so proud to be his mom. Well gotta go.
Thanks for the love and prayers.

Thursday, August 26, 2004 7:45 AM CDT

Hello all,
Brandon and our family continue to do well. We are not planning on going to the hospital until sept. 8th, thats when we find out if there were any live cancer cells in his tumor. God I pray not. This is the longest we have been out of the hospital since April. It feels so good to have almost a normal life. I know it will end soon but for now we will enjoy the time we have to spend as a family. The older kids are getting ready to go back to school on Monday. Brandon is kinda upset about that cause he was supposed to start kindergarten this year with his cousin. Unfortunately he cannot go. I hope we can put him in the second half of the year. But i am not sure how that will work. I have to talk to the school. There are many upcoming events being planned. So please stay tuned.
Thanks for the thoughts and prayers.

Monday, August 23, 2004 2:33 PM CDT

Hi All,
BRANDON IS HOME!!!!! We came home today. In time to eat lunch with his brothers and sister. He was so excited. It feels so good to be home. He was already outside skateboarding and scootering. Till i realized what he was doing. MOm is os mean i made him stop. Dont want to end up back in hospital tonight.
THe older kids got their schedules for school. They are excited. I hope they have a great year.
We have a new edition to the family. A puppy named roxy. She is really cute. Brandon used her as his incentive to come home. I don't care what he used as long as it worked. Well i guess im gonna go i will update more later.
Thanks all for your thoughts and prayers.

Friday, August 20, 2004 9:04 PM CDT

Brandon's surgery went well. It was a very stressful day. The surgeon is very confident he got everything effected by the cancer out. I pray he's right. Brandon has discomfort in his legs, but the doctor says it is normal. Dad pulled night duty tonight. So i get to relax and get a good nights sleep for a change. We aren't out of the woods yet, but we are one baby step closer. I am going to sign off for the night. Thank you everyone for your prayers and concerns.

Thursday, August 19, 2004 5:44 PM CDT

Brandon goes in for surgery tomorrow. I really don't have alot to say. Except i am so scared. I just wish i could wake up from this nightmare.

Saturday, August 14, 2004 7:40 PM CDT

Hello all,
Today was another great day. Shay went to hunter safety and passed his test. Brandon and I went to Kim's boys Nicholas and Daniel's birthday party today. Brandon didn't want to stay cause there were to many people. But did tell me he made 2 new friends. We will have to get the boys together. Surgery is still scheduled for Friday. Will write more later.

Friday, August 13, 2004 1:48 PM CDT

Brandon's counts are finally up. He will be ready for his surgery next friday. The closer it gets the more nervous I get. Our other kids are doing well. Shay is 11, he is taking his hunter safety course tonight and tomorrow, Shawna 13, is loving the computer and getting ready to go back to school. She is the only one looking forward to going back. Matt is 16 and is patiently waiting to get his liscense. I can't wait, no more playing taxi for me now he can do it. I will keep everyone posted on Brandon's surgery and how everything went.
Thanks for the love and prayers,
Jamie

Wednesday, August 11, 2004 7:52 AM CDT

Brandon continues to do well. His counts on Monday were low hopefully when we go up on Friday they came up alot. We were invited to a party and would really like to go. I will have to write more later.

Tuesday, August 10, 2004 8:00 PM CDT

I will give a little history on how we got here. Brandon was having pain in his leg for about 2 months before we went to the Hershey medical center. The doctors in our area kept telling us he needs to see a psychiatrist. But anyway.

Brandon was diagnosed with Neuroblastoma stage 4. He is high risk. He has already undergone 5 rounds of chemotherapy, had a stem cell harvest, is scheduled for surgery August 20th.
Will write more later.

Monday, August 9, 2004 4:17 AM CDT

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