When it has been nice, Kolton & Caidence have been playing in the sandbox and riding his battery powered quad and having a blast. We've been doing a ton of yardwork as well. Zak has been getting wood for the fireplace next year and Kolton has been really enjoying helping him stack it.

Kolton had his appointment to get his last vaccination....however when we got there, it ended up being 4! He was not very happy to say the least. But, he did a great job! I scheduled his next set of appointments for the next few weeks. He needs to have an EKG, Echocardiogram, and an audiogram. He needs to have these done because some of the medications he received during treatment could be harmful to his heart and hearing. We have the EKG/Echo scheduled for the 13th and the audiogram for the 17th of this month. I hope all of the paperwork shows up before the appointments. I have the scripts and referrals being sent here, so we'll see.

A few weekends ago Caidence had a deer tick on her. I was trying to put her hair in pigtails and when I went to divide the hair in the back I saw something black on her head. And upon further inspection, it had legs and was trying to squirm away from the comb! I was freaking out! Zak was on his way home and I waited till he got here and let him pull it out. I was scared because it was a deer tick, so I called the pediatrician and he assured me that the tick needs to be in them for at least 48-72 hours before the Lyme disease could be transferred. We were outside the day before, so it had been less than 24 hours, so I felt much better. She never developed any symptoms and is fine. Thank goodness!

We have a few busy weeks coming up. Zak's parents and brother are coming out for the weekend tomorrow and my parents are coming out the following weekend for Easter. And then the week after that I am going to St. Louis for business for 4 days. My Mom and Aunt Phil are supposed to be coming out to watch the kids while Zak is at work while I'm away. Busy, Busy..

Elijah is scheduled to start his first transplant after Easter. Please keep him in your thoughts and prayers.

Please continue to pray for Kolton and all of the children that are fighting this disease.

~Melissa

Saturday, March 18, 2006 7:22 AM CST

WOW, it's been a long time since we updated. Things here are going well. Kolton is doing very well. He had his appt. for his vaccinations near the end of January. He was quite a trooper. He received 5 shots and we are scheduled this week for the last one and then he will be up to date with his vaccinations. When we went for his appt. his height and weight were taken and he is doing very well. He is in the 95th percentile of other boys his age!

February was a busy month. My parents and Zak's parents were out the first two weekends of the month and we went to Pittsburgh the next weekend. My friend Tanja came over for an afternoon in February as well, so Kolton was able to visit with his friends, Hunter and Jagger. They hadn't played together in awhile and he had a great time!

Kolton had 2 dentist appointments last month as well. He had a few cavities to be filled. It was very difficult. He did not want to get in the chair and threw quite a tantrum. It took almost 45 minutes to get him calm and in the chair. I was actually speaking with the dentist about doing it in the Operating Room when the hygenist coaxed him into the chair. He then had laughing gas to take the edge off once he was in the chair. I will never take my kids anywhere but this dentist's office. They were absolutely amazing with him! Her name is Marsha Gordon and her office is in Allentown, for anyone that is looking for a wonderful pediatric dentist. I would recommend her to anyone!

Kolton and Caidence had been passing a cold/cough back and forth all winter up until about 2 weeks ago. Last week Kolton, Caidence, and myself all had the flu that has been going around. It was pretty bad for a few days, Zak even had to take a day off of work to take care of the kids because I couldn't get out of bed.

We've been keeping busy unpacking and changing things in the new house. We totally remodeled kolton and Caidence's rooms. We did the standard blue for Kolton and pink for Caidence. Their rooms were the first thing we worked on. In Kolton's room there was ugly brown wallpaper on the walls. It took an entire weekend for me to take down the wallpaper and then Zak really had his work cut out for him because the walls were a mess under the wallpaper. Zak did a lot of drywall work and has become quite good at it. He did an excellent job. Zak actually has become very handy and is doing an excellent job with all of his projects.

Last weekend my Aunt Phil and Susan came out for the weekend. It was beautiful outside. We spent all afternoon on Saturday outdoors. We set up Kolton's sandbox and Aunt Phil and Susan bought sand for in it. The kids had a great time playing in it. Kolton was building Disney World. We also did a lot of yard work. We cut down a few trees and pulled out a few bushes that were overgrown and dead. It was fun pulling the bushes out with Zak's truck. Zak is working on buying some fruit trees for the backyard now. Kolton is very excited!!

Also, last weekend Kolton lost his first tooth!! He was so cute!! Unfortunately, Zak and I missed it. We were out for about an hour picking something up and he called us with the news. He looks so cute with his bottom tooth missing!! I'll try to update the pics later and put a picture of his toothless smile on. So, the tooth fairy came and brought him $5. He was so excited!!!

Elijah is doing well and will be starting transplant next month. I've heard that Dr. Grupp is very pleased with his response to treatment.

Please continue to pray for Kolton, Elijah, and all of the children that are fighting this disease.

~Melissa

Saturday, January 21, 2006 5:23 PM CST

Wow it's been awhile!! Our Christmas was wonderful!! The kids had a blast and got way too many gifts! It was amazing for me to think of where we were 1 year before and how blessed to be where we are now. Kolton and Caidence were at a terrific age this year and truly enjoyed the holidays!

We drove in on Christmas Eve morning and went to the Norwin elks to see Santa. We then visited with both families in the afternoon and then spent Christmas Eve at Nana and BubBup's. We woke up and opened gifts from Santa and went up Grammy and Grandpa's for breakfast and opened gifts there and then went back down to my parent's house for a late lunch and then went back up Zak's house for a late dinner. It was truly a day filled of food and gifts.

We then drove back to Allentown on the 26th. The weather was fine but there a large accident on the turnpike that we were unfortunately involved in. The front end of my truck is smashed up. We're thankful though because no one was hurt.

A few days later my Mom and Aunt Phil came out for a few days to help me finish packing and starting to move things over to the new house. On Friday my Mom and Aunt Phil went back home and Jason, Anthony, Sarah, and Josh came out. Anthony and I went and picked up the moving truck and we packed up some things and brought them over to the new house. On Saturday, New Years Eve, we moved the rest of the house. I still can't believe how much stuff we had in our townhouse.

It was a little stressful when the sleet and snow started right before the guys left with the moving truck. The new house is on top of a mountain so there are lots of very steep grades that we are thankful that the truck made it up. Anthony did a great job driving the huge truck! After they arrived Anthony couldn't put the brakes on because the truck kept sliding. Thankfully one of our new neighbors came over with a few logs to place under the tires. So, it was a little messy moving things in and the ramp kept freezing over. It was crazy and I'm glad we're in and it's over.

We're still unpacking and it's going to take a little while because there are a lot of things that we're doing to the house. We are totally renovating Kolton and Caidence's rooms. They are getting there and will hopefully be done in the next week or so. Zak is doing an awesome job fixing things. He's becoming very handy.

The second week of January Kolton had an appointment with Dr. Grupp. He had bloodwork and an exam. Everything looked great and he only needs to be seen every six months. Kolton starts his immunizations again this week. He has to start over from scratch unfortunately.

But all in all everything is going well. We just pray for continued good health and for the health of all the kids that are fighting this disease. Please keep Kolton and the other children in your prayers.

~Melissa

Friday, December 9, 2005 7:27 AM CST

SNOW DAY!

This week we received the most precious gift ever...CLEAR SCAN RESULTS!!!!!! It's amazing how things can change in a year.

These past few weeks have been quite busy. We also have been back to Pittsburgh a lot. We went in for Thanksgiving and had dinner with my parents this year. We have so much to be thankful for. Last year we were in between transplants for Thanksgiving and cherishing every minute before heading back into the hospital for Christmas and New Years. It was very emotional for me when I started decorating for Christmas this year. The memories of last year flooded back when I kept coming across decorations that we decorated Kolton's hospital room with. But this Christmas will be SO special and magical. Kolton and Caidence are at an awesome age now. We went and seen Santa yesterday at the mall. They both were great!

Some more good news....we purchased a house. We placed a bid and it was accepted about a week and a half ago. We are scheduled to close on the 29th of this month. So, we're incredibly busy now trying to pack and have our house clean for showings. There's been a few people that have come through this week. I can't wait for this place to sell, it's very difficult to keep this house clean with 2 kids.

I have some very unfortunate news....another little boy in our family has been diagnosed with Neuroblastoma Stage 4. He is Zak's Mom's 3rd cousin (or something like that). His name is Elijah Ketley and he is 2 1/2 years old(the same age Kolton was when he was diagnosed). He was diagnosed a few weeks ago. They were treated initially at Pittsburgh Children's Hospital, but are going to continue their treatment at Philadelphia's Children's Hospital. We were at both hospitals and found Philly to be 100etter. The hospital was nicer inside and the staff was better with not only the kids but the families in general. Please keep him in your prayers as they begin their battle with this disease.

Wednesday, December 7, 2005 3:57 PM CST

I just wanted to share the great news that Kolton's scans came back clear again!!!! I just got the news and am so relieved...I can't quit crying. Wow, what a difference a year can make....last year we spent the holidays in transplant and now I feel like I couldn't be luckier!! Thank you so much for everyone's support and prayers!!

Tuesday, December 6, 2005 8:51 PM CST

Kolton had his CT scan and MIBG injection this morning. Everything went well but we won't have any results till tomorrow(Wed) unfortunately.

Please keep Kolton in your prayers..... and thank you so much for everyone's support!!

~Melissa

Wednesday, November 2, 2005 2:53 PM CST

Wow, it’s been awhile again since we’ve written in. First off, Kolton is doing very well.

I had my gall bladder surgery and everything went well. My Mom and Zak’s Mom came out to help with Kolton & Caidence after the surgery. The kids had a blast with the Grandmas and I was able to rest. I really appreciated the help. Kolton was very cute how he was so concerned for me. He carved his pumpkin and brought it up to the bedroom so I could enjoy it! I'm feeling much better now. Thank you for all of the get well entries I received : )

Kolton and Caidence went trick-or-treating last Friday night. They both a great time! Caidence dressed up like Cinderella and Kolton was the black Power Ranger, Dr. O.
Kolton LOVED it and Caidence didn’t take long to figure out what to do. It was cute, she didn’t understand to only grab 1 piece of candy and when we would try to put some back everyone would say no….so Caidence ended up with a much larger sack of candy than Kolton. It was definitely wonderful for Zak and I, as every special day is with our little boy doing well : )

It’s been a year since Kolton’s admission for his 1st transplant. He started transplant on October 27th last year and spent last years Halloween in the hospital. It’s unbelievable how far he has come in one year. Those were some of the worst days and lasting memories that we will hopefully ever have to endure. He talks about transplant occasionally in regards to playing certain games or watching movies. It’s great how he only remembers the good parts like the toy room or games. Kids are amazing!

Kolton had a dentist appt on Monday. He did very well for the exam, getting x-rays and everything. They had little pumpkins all over the office that he was able to choose one of. He’s painted it for the past 2 days!

I scheduled his next round of scans for next month. He will be going on December 6th & 7th. He will have a CT and MIBG scan and then will have his (almost) 1 year post transplant visit with Dr. Grupp. I’m trying not to think about them as much as I can because I can sort of become somewhat of a basket case around scan time. When the scans confirm what I believe in my heart to be that he is a strong boy that can beat this disease….it will truly be a Merry Christmas in our house!!

Please keep Kolton in your prayers.

~Melissa

Friday, October 14, 2005 3:07 PM CDT

Update: We went for Kolton's monthly clinic appt today and we will be scheduling his next set of scans for December. All of his labs and everything looked good today : )


Here's a link to all of our Disney Pictures. I think it works, but let me know if I need to give a password or something.

http://www.imagestation.com/album/index.html?id=2119126992




Thursday, October 13, 2005 10:39 AM CDT

Hello everyone, haven’t been posting for quite some time. Things are going very well right now so there hasn’t been much to talk about. We’re really enjoying a little normalcy in our lives for the first time in 1 1/2 years. Just enjoying this time of bliss prior to the next stressful lead up to scans.

Anyhow, we finally have something to write about though. DISNEY!!! We spent October 2nd – October 7th at “Give Kids the World”, a resort for “Make-A-Wish” kids or kids taking trips with other similar programs. It was a total blast to say the least and the kids were on top of the world.

On Sunday morning, a limo came to pick us up and take us to the airport. The kids enjoyed the flight, but weren’t as impressed as we expected. The fun then all started when we were able to chase lizards around the outside of the airport, which was a reoccurring theme on the trip (chasing lizards that is).

We arrived at the resort at around 1PM and noticed immediately how hot it was. A sharp difference from the 65 degrees we left behind in PA. It was very hot and very muggy the entire week with temps around 87 degrees and very humid with rain on and off each day.

On Sunday evening, we visited Epcot for a short time but it started raining after we arrived so we didn’t get to see or do very much. We had a nice meal and then went to bed early following a very long day.

On Monday morning, Kolton came into our room (while it was still dark out) to see if it was morning yet because he couldn’t wait to go to Animal Kingdom to dig for Dinosaur bones. He had been talking all week about doing the dinosaur bone dig. So needless to say we were up early and on our way to Disney’s Animal Kingdom. We spent a ton of time there and the employee in charge spent a lot of time with Kolton helping him dig and showing him things. Kolton had a blast and they treated him as if he owned the place. No lines, no waiting, and treated like a king! He wore a small green “Give Kids the World” button that gave him access to so many cool things. When we would walk up to a ride, a greeter would grab us right away and discreetly bring us to the front and get us on the ride.

Midday each day had us back at the villa for the kids nap time. It was far too hot for them to fall asleep at the park and to be honest, Melissa and I really needed a nice cool break and a shower after a morning of walking around the parks. After the Monday nap, we were off to the Magic Kingdom to ride a few rides and check out the electric light parade and fireworks. Kolton’s face was priceless during the parade. He absolutely loved it. During the fire works he just kept yelling “WOWWW!!!!” and everyone around would laugh. It was definitely good times.

Tuesday saw us back at the Magic Kingdom to meet the Characters. We had no problem with that because of the green button. Kolton really wanted to meet Cinderella and we accomplished that along with Mickey& Minnie Mouse, Donald, Goofy, Snow White, Sleeping Beauty, Arial, Pooh, Tiger, Eoyore, Piglet, and some others I’m sure I’m missing. We rode lots of rides and played some games in which Kolton always won regardless because of the green button again.

Wednesday we hit Universal Studios Theme Park, which was a lot of fun as well. Kolton got his face paint like Darth Maul from the Star Wars movies. Kolton and I rode the Jurassic Park ride together only after confirming with the greeter that it was ok for a 4 year old. It wasn’t so cool when we climbed that 300ft hill and then fell off the other side at about 500mph to the bottom while a T-Rex was trying to eat us. I nearly needed to change my pants, and Melissa has evidence of that in a great photo. Meanwhile Kolton was screaming and yelling for the joy of it and thought it was great. I was expecting him to be crying but no, he loved it. There were lots of cool rides for the kids but the highlight of the day was spending an hour running through a water sprinkler to cool off. It was so hot that the kids really needed it, and after that they both fell asleep and we went home and hung around the resort a while.

Thursday we went to the ocean for a few hours. Tropical storm Tammy had the ocean all turned up and the surf was totally out of control. We couldn’t even let go of Caidence for a second in fear of her getting swept away. Regardless of that, she loved it and kept running back down the beach to the water. Kolton got knocked over a few times and it was funny watching that. He loved it.

Thursday evening we stayed at the resort and enjoyed the activities there. Santa was there and Kolton and Caidence sat on his lap and got pictures taken and they received presents as well. We then went over to the Ice Cream Parlor where they were able to decorate sugar cookies, and followed it up by getting ice cream like we had every other night so far. After that we went over to play in the game room and checked out the DinoPutt miniature golf.

Friday we had to check out at 11am and decided we would drive over to Sea World for the day since our flight didn’t leave till 8pm. It was by far and away the hottest day of the week. More oppressive than I may have ever experienced in my life to be more specific. We took Kolton to the sea lion show and he enjoyed that. I paced in the back of the auditorium with Caidence who was totally miserable due to the heat and humidity. We went and saw Shamu (who Kolton calls Shampoo), we fed the sea lions, and played in the huge jungle gym for a while. We left the park and got some nearly raw chicken to eat from Long John Silvers prior to heading to the airport. Despite the rainy weather the flight was smooth and we got back to the house shortly after 1am. It was raining to beat the band in PA when we returned and we quickly got the kids up to bed and cozy warm. Melissa and I joined them asleep quickly. The next days were spent sopping up water in the basement after 9” of rain fell in a 24 hour period. Not fun but I guess that’s the way it goes.

So there you have it, a short synopsis of a lot of things we did last week. Kolton and Caidence had a fabulous time and I’m sure they’re itching to get back down there. Despite the rain and heat it was as good as we could have ever imagined and the people all went totally out of their way to make it the best Wish Kolton could ever ask for.
Thank you so much to Make a Wish and Woodstone Golf Club for making this past week as wonderful and magical as ever!

Thanks for stopping by!!

~Zak

Thursday, October 13, 2005 10:39 AM CDT

Hello everyone, haven’t been posting for quite some time. Things are going very well right now so there hasn’t been much to talk about. We’re really enjoying a little normalcy in our lives for the first time in 1 1/2 years. Just enjoying this time of bliss prior to the next stressful lead up to scans.

Anyhow, we finally have something to write about though. DISNEY!!! We spent October 2nd – October 7th at “Give Kids the World”, a resort for “Make-A-Wish” kids or kids taking trips with other similar programs. It was a total blast to say the least and the kids were on top of the world.

On Sunday morning, a limo came to pick us up and take us to the airport. The kids enjoyed the flight, but weren’t as impressed as we expected. The fun then all started when we were able to chase lizards around the outside of the airport, which was a reoccurring theme on the trip (chasing lizards that is).

We arrived at the resort at around 1PM and noticed immediately how hot it was. A sharp difference from the 65 degrees we left behind in PA. It was very hot and very muggy the entire week with temps around 87 degrees and very humid with rain on and off each day.

On Sunday evening, we visited Epcot for a short time but it started raining after we arrived so we didn’t get to see or do very much. We had a nice meal and then went to bed early following a very long day.

On Monday morning, Kolton came into our room (while it was still dark out) to see if it was morning yet because he couldn’t wait to go to Animal Kingdom to dig for Dinosaur bones. He had been talking all week about doing the dinosaur bone dig. So needless to say we were up early and on our way to Disney’s Animal Kingdom. We spent a ton of time there and the employee in charge spent a lot of time with Kolton helping him dig and showing him things. Kolton had a blast and they treated him as if he owned the place. No lines, no waiting, and treated like a king! He wore a small green “Give Kids the World” button that gave him access to so many cool things. When we would walk up to a ride, a greeter would grab us right away and discreetly bring us to the front and get us on the ride.

Midday each day had us back at the villa for the kids nap time. It was far too hot for them to fall asleep at the park and to be honest, Melissa and I really needed a nice cool break and a shower after a morning of walking around the parks. After the Monday nap, we were off to the Magic Kingdom to ride a few rides and check out the electric light parade and fireworks. Kolton’s face was priceless during the parade. He absolutely loved it. During the fire works he just kept yelling “WOWWW!!!!” and everyone around would laugh. It was definitely good times.

Tuesday saw us back at the Magic Kingdom to meet the Characters. We had no problem with that because of the green button. Kolton really wanted to meet Cinderella and we accomplished that along with Mickey& Minnie Mouse, Donald, Goofy, Snow White, Sleeping Beauty, Arial, Pooh, Tiger, Eoyore, Piglet, and some others I’m sure I’m missing. We rode lots of rides and played some games in which Kolton always won regardless because of the green button again.

Wednesday we hit Universal Studios Theme Park, which was a lot of fun as well. Kolton got his face paint like Darth Maul from the Star Wars movies. Kolton and I rode the Jurassic Park ride together only after confirming with the greeter that it was ok for a 4 year old. It wasn’t so cool when we climbed that 300ft hill and then fell off the other side at about 500mph to the bottom while a T-Rex was trying to eat us. I nearly needed to change my pants, and Melissa has evidence of that in a great photo. Meanwhile Kolton was screaming and yelling for the joy of it and thought it was great. I was expecting him to be crying but no, he loved it. There were lots of cool rides for the kids but the highlight of the day was spending an hour running through a water sprinkler to cool off. It was so hot that the kids really needed it, and after that they both fell asleep and we went home and hung around the resort a while.

Thursday we went to the ocean for a few hours. Tropical storm Tammy had the ocean all turned up and the surf was totally out of control. We couldn’t even let go of Caidence for a second in fear of her getting swept away. Regardless of that, she loved it and kept running back down the beach to the water. Kolton got knocked over a few times and it was funny watching that. He loved it.

Thursday evening we stayed at the resort and enjoyed the activities there. Santa was there and Kolton and Caidence sat on his lap and got pictures taken and they received presents as well. We then went over to the Ice Cream Parlor where they were able to decorate sugar cookies, and followed it up by getting ice cream like we had every other night so far. After that we went over to play in the game room and checked out the DinoPutt miniature golf.

Friday we had to check out at 11am and decided we would drive over to Sea World for the day since our flight didn’t leave till 8pm. It was by far and away the hottest day of the week. More oppressive than I may have ever experienced in my life to be more specific. We took Kolton to the sea lion show and he enjoyed that. I paced in the back of the auditorium with Caidence who was totally miserable due to the heat and humidity. We went and saw Shamu (who Kolton calls Shampoo), we fed the sea lions, and played in the huge jungle gym for a while. We left the park and got some nearly raw chicken to eat from Long John Silvers prior to heading to the airport. Despite the rainy weather the flight was smooth and we got back to the house shortly after 1am. It was raining to beat the band in PA when we returned and we quickly got the kids up to bed and cozy warm. Melissa and I joined them asleep quickly. The next days were spent sopping up water in the basement after 9” of rain fell in a 24 hour period. Not fun but I guess that’s the way it goes.

So there you have it, a short synopsis of a lot of things we did last week. Kolton and Caidence had a fabulous time and I’m sure they’re itching to get back down there. Despite the rain and heat it was as good as we could have ever imagined and the people all went totally out of their way to make it the best Wish Kolton could ever ask for.
Thank you so much to Make a Wish and Woodstone Golf Club for making this past week as wonderful and magical as ever!

Thanks for stopping by!!

~Zak

Thursday, September 29, 2005 1:43 PM CDT

Kolton is now 4 YEARS OLD!!!! He turned 4 last Thursday and we celebrated his birthday on Saturday with all of the family at my parent's house.

He had a great birthday. He had a few small gifts to open on Thursday morning and we decorated the house with 20 balloons. He was very excited when he came downstairs.

He was VERY VERY excited for his birthday party and was even counting down the days. On Saturday morning when we went down to Nana and Bubbup's they had his present from them and Zak and I up. We bought a castle moonwalk for him and Caidence to jump in. I was going to rent one for the party, but this was cheaper to buy it. I was so excited to give it to him, and he was thrilled when he saw it. We then had it up for the kids to jump in that evening for his party. The party went very well and he had a GREAT time.

We came back to Allentown then Sunday morning. He's been having fun playing with the moonwalk in the yard for the past few days too. It's nice because it only takes a minute to blow up, and it's not something that takes a permanent residence in the yard.

We leave for Disney World on Sunday morning and Kolton is beside himself with excitement. We have the countdown on the fridge and I'm starting to get things together a little bit. Caidence came down with a cold on Sunday and I took her to the pediatrician yesterday because she's starting to cough. I hope she's feeling better before Sunday.

Nothing else is really new here. Kolton is feeling well and will be going to the Onco clinic when we get back from Disney.

Wednesday, September 14, 2005 1:05 PM CDT

HOORAY HOORAY ~~~CLEAR SCAN RESULTS!!! We couldn't be more relieved!!

It's so stressful around scan time. It really puts life into perspective. Kolton is such a trooper with scans anymore. He drinks the contrast well. We play a game....Zak leaves the room for something and Kolton drinks it quick to 'trick' Daddy when he comes back in. It works like a charm! He then has to have his IV placed and he still cries, but realizes it needs to happen and he doesn't fight it. He laid SO well then for the CT scan. We then took him to McDondalds and hung out in the atrium for awhile because we had a few hours to kill before he could get his injection of the radioactive dye for his MIBG scan the next day.

When we were called finally for his injection, we were told that they only sent 1/2 the amount and we would need to wait at least another hour till it was sent over. So, finally when he was able to get the injection(in his IV), he did well. They then removed the IV.

The next day we went back down to CHOP for the MIBG scan. It took twice as long as it usually does for the scan because even with the additional dye that was sent, it still was not the full amount. And because of that they have to slow down the machine to get an accurate picture. Kolton did well, but was NOT happy. He got sick of laying there taped down to the table unable to move for an hour! He was very frustrated.

When we received the email from Dr Grupp, it was so wonderful! We had the best Labor Day weekend ever!! The weather was so beautiful and we just played outside with the kids all weekend.

We have so much coming up as a family over the next few weeks. This coming weekend Zak and I are going to Penn State for the weekend. We used to go yearly for a tailgate party with a bunch of friends we went to school with, but we haven't gone since before Kolton was diagnosed. It should be a lot of fun! Grammy is coming out to watch Kolton and Caidence.

The next week is KOLTON'S 4TH BIRTHDAY!! We will be going into Pittsburgh to celebrate his birthday. We will be having a Star Wars Party. Kolton originally wanted star wars plates and Power Ranger cups, but was ok with all star wars. He's VERY excitd for his party though.

The next weekend we go to Disney World for Kolton's Make a Wish trip. He's REALLY excited about that as well. He's been watching a movie about Disney World lately, and is getting more and more excited!

Then a week and a half later, I will be having my gall bladder removed. I'll be glad when it's gone though, because it's only causing me grief these days.

But, all in all....lots of fun for Kolton coming up!

Friday, September 2, 2005 5:36 PM CDT

Finally the results we've been waiting for.

Dr. Grupps email

"Hi-
They cleared my building with some riduclous bomb threat, but I just heard from Nuclear med and the scan was perfect. No abnormal uptake.

have a great weekend :-)
-Steven Grupp
"

Now off to diner with my wife for a little R&R. Kolton & "The Bug" (Caidence) are at McDonalds celebrating as well. Should be the best labor day weekend ever.

Thursday, September 1, 2005 7:40 PM CDT

One down and one to go. Dr. Grupp emailed at 6:30PM and said

"CT looks perfect, no change of any sort. MIBG next"

Sunday, August 28, 2005 1:00 PM CDT

Kolton is doing well. His cough is just about gone and Caidence's nose has finally stopped running. We kind of had a difficult week though.

On Wednesday when I was trying to put Kolton down for his nap he was stalling (like usual) and was hungry and this and that. After he ate and ran out of excuses we finally made our way upstairs and he then said he had a tummy ache. It sounded to me like the ones where he doesn't feel like eating dinner but wants candy and his tunny hurts all of a sudden. So I didn't really believe him and we laid down for a few minutes and then he got up to go the bathrrom and he vomited. He vomited a few times before it was all done. I have no idea what caused it, but for Zak and I it was all too familiar. It reminded us of prediagnosis when Kolton had tummy aches and would vomit out of the blue and this really upset us. After an hour or so Kolton was fine though and wanted to go to the store with Zak as planned. So, we all went and he was fine.

I was then up all night with a gall bladder attack. It was awful, but I finally was able to get about 2 hours of sleep but when I woke up I couldn't walk or even sit up in bed without running to the bathroom to vomit. I'm not sure if it was from the gall bladder attack or hopefully it was something Kolton had that he gave to me. So, Zak took off work and took me to the Dr and after having a sonogram done I was referred to a surgeon to have my gall bladder removed. Ugh. I feel like there's no time for us to be sick. We have enough to worry about with Kolton.

So, Kolton's scans are scheduled for Thursday and Friday of this week. We will go in on Thursday for the CT scan at 8:30am and at 11:30 will be the injection of the radioactive dye for his MIBG scan on Friday at 10:30am. For the CT scan he will need an IV placed and he'll need to drink a contrast dye. It's terrible to have to hold your child for someone to poke and stick. This will be a very stressful and anxiety filled week. I can't wait to hear the words.... No Evidence of Disease found. It will be so wonderful!!

Please keep Kolton in your prayers as he undergoes scans this week. Thank you.

~Melissa

Friday, August 19, 2005 11:25 AM CDT

We were at the pediatrician again today because Kolton still has a cough that doesn't sound that great. He received another antibiotic and if there's no improvement by the end of the weekend, they want to get a chest x-ray. Caidence was also seen because her nose is still running and she seemed like something was really bothering her this morning. But, she just has a cold.

I also moved up Kolton's scans to the 1st and 2nd. We can't wait till the next week. The worry is just overwhelming sometimes.

Wednesday was Kolton's LAST DAY OF TREATMENT! He took his last dose of his accutane on Wednesday. He was very excited. We now just continue to pray and wait for 4 LONG years. He will continue his bactrim 2 days a week for a few more months and he will also need to be re-immunized in a few months. He will also continue to have scans.

Please keep Kolton in your prayers as we finish treatment and have scans in 2 weeks. Thank you.

~Melissa

Friday, August 12, 2005 7:03 AM CDT

Sorry it's been a little while since we updated. Not a whole lot has been going on. Kolton currently has bronchitis though and Caidence is getting a cold or something because her poor little nose is so runny.

Kolton is on his last round of accutane. He will finish next Wednesday. He's doing pretty well with it this time.

We had a great time at Idlewild Park when we went at the end of July. There was a big group of us. It was me, NaNa, Aunt Phil, Aunt Vicki, Carissa, and the kids. Caidence isn't much of a rider however. She gets scared and her little body shakes. Kolton on the other hand loves it!

We scheduled Kolton's next round of scans on September 7th and 8th. We will go on the 7th and he'll get an IV, they'll draw blood, and inject him with the radioactive dye for the MIBG scan the following day. He will then get the CT scan a little bit later on the 7th.

Anxiety is definately building for us. It's so hard living like this. No matter what you're doing or planning, you always have the nightmare of relapse in the back of your mind.

We are going to Disney World in October with Make a Wish. Kolton is very excited. We were planning on going to the beach while we were there, but I'm not sure there will be enough time. I'm sure it will be a great time though with or without the beach.

~Melissa

Tuesday, July 26, 2005 11:55 AM CDT

Kolton is doing well. He had an awesome weekend this past weekend. Zak and I took him to Stoney Brook Camp. It's a hunting camp near State College.

We brought his battery operated quad and he raced his remote control Hummer we brought. It was so funny! I think the adults had more fun with the Hummer, but Kolton had a blast racing.

Kolton went fishing with me, Aunt TuTu, and Carissa and he caught 3 fish on cheese! Kolton also had fun roasting marshmallows and sometimes cooking them till they burned right off the stick! He took rides on the quad with Uncle Anth and even followed him a few times on his quad up the dirt road. He also took rides on Uncle Donny's golf cart and we even tried to put him to sleep Saturday night on a nice leisurely golf cart ride, but he would have none of that. But all in all he had a blast!

Kolton did however have another bug bite his ear and make it and the one side of his face swell up. I gave him the zyrtec he was prescribed last time and the swelling went down the next day. This ear swelling is a funny thing. This was the third time it's happened.

We are heading to PIttsburgh tomorrow and are going to Idlewild Park on Thursday. I think the kids should have a good time. Hopefully the weather will be nice and not too hot.
I'll add some pics of camp.

-Melissa

Saturday, July 16, 2005 7:46 AM CDT

Kolton is doing very well. He is on week two of his 5th round of accutane. He is pretty dry especially on his face, but the Arbonne products I use on him really seem to help.

It has been so hot and muggy that we haven't done a whole lot of excting things outside. We filled the baby pool quite a few times and him and Caidence had fun splashing and going down the little slide. The only thing is Kolton LOVES to swim naked! He's going through a phase now where he doesn't like his swim trunks to be wet against his skin. It's funny, one minute I'll have his swim trunks on him and I turn my head and next thing I know there's a little naked butt running past.

Last weekend we went into Pittsburgh and went to Kolton and Caidence's cousin Gino's 1st birthday party. The kids had a blast.

Kolton has been enjoying picking raspberries this past week with Zak in the woods behind our house. Last week I also took him and Caidence to a local farm to pick blueberries and raspberries. Kolton had fun, but I think Caidence is a bit young still. Kolton ate more than went in the bucket though : ) He LOVES blueberries!!

Monday, July 4, 2005 4:39 PM CDT

HAPPY 4TH OF JULY!

Sorry we haven't written in in awhile, but nothing new or exciting is going on. Kolton is doing well. He had a clinic appointment last Friday and had bloodwork done to make sure everything is ok before starting his 5th round of accutane. He will start on Wednesday for two weeks and then have two weeks off. He'll then have one more round before completing his entire course of treatment. Kolton's Dr. wasn't kidding last year after diagnosis when he told us that there was going to be a long road ahead of us. It has been but, we're praying that the end of this road is a happy and healthy one!

We've been out and about a bit more lately. Kolton has been having a good time playing with other little kids. Him and Caidence have also enjoyed the pool and today we put up the 'slip & slide'. Kolton took a bit to warm up to it because he doesn't like the water in his face or how cold the water is coming from the hose, but after he did he loved it. Caidence liked walking near it and getting sprayed with the sprinklers on it. It was really cute. I took some pictures that I'll post.

-Melissa

Thursday, June 16, 2005 11:23 AM CDT

Kolton is doing very well. He is on week two for this month of his accutane. His face is a little dry and he's a little moody, but not too bad. His dose was increased this time too. I exfoliate his face and then put lotion on and it seems to take care of the dryness.

Nothing much is happening, but as always no news is good news. Kolton has been having fun playing outside with Caidence. They both love the baby pool that we have in the yard. They go back and forth from the pool to the sandbox. I guess they are getting ready for the beach.

Kolton is very excited to get to play with all of his friends again now that the protective isolation has been lifted. He's very excited to see his friends Mia and Lucas next week. He hasn't seen them in a few months.

Friday, June 10, 2005 10:26 PM CDT

FINALLY!!!! I know you've all been waiting for an update but I’ve been very reluctant to post anything until we had some real answers.
Tuesdays CT Scan went off without a hitch and there was no change to the affected areas. Dr. Grupp was very optimistic when he saw the CT scan and said everything looked just perfect. He also said that we shouldn't worry too much about the MIBG at that point.
Yesterday we went in for that MIBG. It went quick and smooth but we didn't get results following the exam. Dr Grupp did tell Melissa later in the day that the tech did review them briefly and said at first glance they looked fine but that he had not compared them to January's scan. We were relieved and had a good night as a family. I went to work this morning and at 10am Melissa called be sounding concerned from the get go. Apparently when they compared the 2 MIBG (Jan vs. Today) they noticed a "Smutch" of white on our most recent scan. White is very bad on MIBG scans but Dr. Grupp felt confident (he said 90that it was nothing and that we shouldn't worry about it. YA RIGHT!!! After Melissa gave me this news I felt terrible and needed to talk to the Dr. myself so I called him and we decided that is would be a good idea to rescan Kolton today for some assurance one way or the other. The thought was that if the "Smutch" moves, it's not anything to worry about. If it stays the same, we're no worse off then the 90ssurance we have today. We had nothing to lose so I left work and drove to Philly. On a tangent, Kolton spent all day outside yesterday and must have gotten bit by a fly. When I arrived home today to take him to the hospital for his scan his ear was VERY swollen. By the time we got to the hospital his whole left side of his face was very swollen and fluid was coming out all over. We took him right to clinic and they diagnosed him with Cellulites and a severe case at that. He was immediately placed on IV antibiotics (another pinchy) and given benadryl to reduce the swelling. We spent about 4 hours in clinic before we finally made it to the MIBG lab for our scan. Oh ya, they admitted Kolton for at least 48 hours for this infection. That sucks!
Because of the Benadryl Kolton slept for a long time including right through the MIBG. That's good, as he needs to stay real still. We left the hospital at 4:33pm today and called Dr. Grupp right away but got his voice mail. We then got caught in 2 hours of traffic (as usual). Finally Dr. Grupp called and told us the news we've been waiting for.....


CLEAR SCAN!!!

The scan looked just like the one in Jan and yesterdays was nothing more then a false reading. If cancer had truly been present it would have read positive again for sure. Dr. Grupp was noticeably relieved with the results.
So one scan down and a bunch more to go. No news is good news. We'll, off to Lehigh Valley hospital for admission for a couple days. It'll be challenging without my mother around but we'll make do one way or the other. Thanks everyone for the kind word and support. Let's keep kickin' butt!!


UPDATE: We were able to take Kolton home on oral antibiotics today at 4:30pm. The stay wasn't that bad since he wasn't hooked up much. He spent most of his time in the toy room so it was probably like a mini vacation. His swelling is much better. They're thinking it was most likely not an infection afterall but an insect bite and allergic reaction instead. Damn knats!

Thursday, June 9, 2005 5:58 PM CDT

FINALLY!!!! I know you've all been waiting for an update but I’ve been very reluctant to post anything until we had some real answers.
Tuesdays CT Scan went off without a hitch and there was no change to the affected areas. Dr. Grupp was very optimistic when he saw the CT n and said everything looked just perfect. He also said that we shouldn't worry too much about the MIBG at that point.
Yesterday we went in for that MIBG. It went quick and smooth but we didn't get results following the exam. Dr Grupp did tell Melissa later in the day that the tech did review them briefly and said at first glance they looked fine but that he had not compared them to January's scan. We were relieved and had a good night as a family. I went to work this mooring and at 10am Melissa called be sounding concerned from the get go. Apparently when they compared the 2 MIBG (Jan vs. Today) that noticed a "Smutch" of white on our most recent scan. White is very bad on MIBG scan but Dr. Grupp felt confident (he said 90%) that it was nothing and that we shouldn't worry about it. YA RIGHT!!! After Melissa gave me this news I felt terrible and needed to talk to the Dr. myself so I called him and we decided that is would be a good idea to rescan Kolton today for some assurance one way or the other. The thought was that if the "Smutch" moves, it's not anything to worry about. If it stays the same, we're no worse off then the 90% assurance we have today. We had nothing to lose so I left work and drove to Philly. On a tangent, Kolton spent all day outside yesterday and must have gotten bit by a fly. When I arrived home today to take him to the hospital for his scan his ear was VERY swollen. By the time we got to the hospital his whole left side of his face was very swollen and puss was coming out all over. We took him right to clinic and they diagnosed him with Cellulites and a severe case at that. He was immediately placed on IV antibiotics (another pinchy) and given benadryl to reduce the swelling. We spent about 4 hours in clinic before we finally made it to the MIBG lab for our scan. Oh ya, they admitted Kolton for at least 48 hours for this infection. That sucks!
Because of the Benadryl Kolton slept for a long time including right through the MIBG. That's good, as he needs to stay real still. We left the hospital at 4:33pm today and called Dr. Grupp right away but got his voice mail. We then got caught in 2 hours of traffic (as usually). Finally Dr. Grupp called and told us the news we've been waiting for.....


CLEAR SCAN!!!

The scan looked just like the one in Jan and yesterdays was nothing more then a false reading. If cancer had truly been present it would have read positive again for sure. Dr. Grupp was noticeably relieved with the results.
So one scan down and a bunch more to go. No news is good news. We'll off to Lehigh Valley hospital for admission for a couple days. It'll be challenging without my mother around but we'll make do one way or the other. Thanks everyone for the kind word and support. Let's keep kickin' butt!!

Thursday, June 2, 2005 2:04 PM CDT

Today was a big day in Kolton’s young life. We met his racing hero Jeff Gordon at the Dupont headquarters in Wilmington, Del. It only took us about 1.5 hours to drive there which is nothing for us. We didn’t know what to expect but when we got there they had a ton of stuff set up for people to do. All of the Hendricks Motor Sports cars were there (Jimmy Johnson, Brian Vickers, Kyle Busch, and a few Jeff Gordon cars). They also have simulators set up and all sorts of other things. Jeff had apparently done all this before because he was great with Kolton and things were not as awkward as I thought they might be. Kolton was also good and told Jeff all sorts of stories and how he likes to see him crash and stuff. Everyone got a good chuckle out of that. Melissa accidentally made the picture files too large on the camera to post so we’re gonna need a day to get them printed and scanned to the site. Worth the wait though.

Scans are next Tues and Wed and anxiety levels are very high to say the least. It’s a really crappy feeling. I doubt I’ll be eager to post anything new here until after we get some results (hopefully of the good variety). Until then wish us luck!

Wednesday, May 25, 2005 8:14 AM CDT

Things have been quiet on the battle front the last week. After the huge drunkin' bash we through for Caidence the other day (Melis, myslef, Kolton, and Caidence were the only attendies) things have really simmered down. Kolton is complete with round 3 of Accutane this evening. He handled this round better then the last two and I truthfully noticed no difference in attitude at all.
We found out Tues that Caidence has strep throat. Normally this just stinks but now it really stinks because if Kolton gets it along with the fever we're in the hospital for a few days. Not what we're looking for. So far so good though and even though he has done everything in his power to catch this from Caidence he hasn't gotten hit yet. We'll see.
We're hopefully heading back into Pittsbugh this weekend (I say "hopefully" because I need to allow for Kolton to get sick). Saturday is a planned bash in Caidence's honor. I'm sure she'll be in all her glory with the spotlight on her. No one loves the spotlight like my little girl. The more attention the better. Hopefully the rains stay away and she has a nice time playing outside. Kolton should have a blast playing with all of his cousins. To tell you the truth, he probably doens't know any of them at all with everything that has happened the last year. It'll be nice to finally get them reaquainted. We hope everyone can come.

Wednesday, May 18, 2005 8:35 AM CDT

HAPPY BIRTHDAY TO MY BABY GIRL CAIDENCE!!!!!!

Today Caidence is a big 1 year old. It's nice to have this birthday come as we never really got to enjoy her actual birth in the first place. We'll make up for that in this birthday and future ones. Later on today I will be bringing home a cake for her to feast on so there will be some good pictures. She'll just tear into it with full force. Check them out.

Kolton is doing well and one week into round 3 of Accutane. Mommy is keeping his skin in great shape this time and he is not very moody as he was in the past. I guess we have another week so we'll see. We got confirmation of our meeting with Jeff Gordon. June 2 at 11am Kolton will have a private meet and greet with Jeff and some of the guys from the racing team. The Dupont Corporation is going through a lot of trouble to put this all together and we're being hosted by the Director of Marketing. Sounds like a fun time they have planned for Kolton. Good pictures will surely come from that as well. Not much more to write. No news is good news in this adventure!

Wednesday, May 11, 2005 3:52 PM CDT

Good morning all, fine day out! Kolton got his blood work done yesterday for his 3rd round of Accutane, which commences tomorrow. The last round must have made his head itchy because he scratched right throw the skin in two places. Not pretty. Besides that things are going well. Everyone's been enjoying having mommy back after her trip and busy weeks leading up to it.

This evening (Tues) has a lot of meaning to us. One year ago tonight was when we found the lump on Kolton's Neck and rushed him to the emergency room. Life hasn't been the same ever since that night. The memories of that week and a half haunt me daily. The good news is that Kolton is doing MUCH better this Tuesday then he was on Tuesday, one year ago. I believe that day he was sick with fever and doubled over with stomach pains due to the grapefruit sized tumor in his stomach that we didn't know about. Today he is happy! getting healthier by the day, and no fever or complaints of pain. We have definitely come a long way and developed into quite a family over the past year. I'm very proud of what we have. I've never been closer to my wife then I am now and I never take a day for granted with the kido's. They're all the best things I have going for me. I asked my lovely wife to post some before and after pictures of Kolton so everyone could see the change between now and then. Most notably, he is MUCH taller then before we started though he still is the same weight as he was prior to treatment. He was a BIG boy before treatment and now he is "Average" in size as compared to his peers.
As the days draw nearer to his next scan in the beginning of June the anxiety continues to build. They are on June 7th and 8th. The 7th is the CT Scan, MIBG Scan injection, and a visit with Dr. Grupp. The MIBG scan is the next day. Oh my, I can't even imagine the level of anxiety those days.
I can't imagine the thought of waiting for the results. It makes my stomach turn over just thinking about it.

Tuesday, May 10, 2005 8:46 AM CDT

Good morning all, fine day out! Kolton got his blood work done yesterday for his 3rd round of Accutane, which commences tomorrow. The last round must have made his head itchy because he scratched right throw the skin in two places. Not pretty. Besides that things are going well. Everyone's been enjoying having mommy back after her trip and busy weeks leading up to it.

This evening (Tues) has a lot of meaning to us. One year ago tonight was when we found the lump on Kolton's Neck and rushed him to the emergency room. Life hasn't been the same ever since that night. The memories of that week and a half haunt me daily. The good news is that Kolton is doing MUCH better this Tuesday then he was on Tuesday, one year ago. I believe that day he was sick with fever and doubled over with stomach pains due to the grapefruit sized tumor in his stomach that we didn't know about. Today he is happy! getting healthier by the day, and no fever or complaints of pain. We have definitely come a long way and developed into quite a family over the past year. I'm very proud of what we have. I've never been closer to my wife then I am now and I never take a day for granted with the kido's. They're all the best things I have going for me. I asked my lovely wife to post some before and after pictures of Kolton so everyone could see the change between now and then. Most notably, he is MUCH taller then before we started though he still is the same weight as he was prior to treatment. He was a BIG boy before treatment and now he is "Average" in size as compared to his peers.
As the days draw nearer to his next scan in the beginning of June the anxiety continues to build. I can't imagine the thought of waiting for the results. It makes my stomach turn over just thinking about it.

Friday, April 29, 2005 3:50 PM CDT

Kolton just completed his second round of Accutane theropy. This one was very similar to the previous in that he was very dry and very irritable. He still gets a major kick out of taking his pills before we can count to 10. He now really beats the system by taking all his pills at once. That's 2 accutane pills and a half a bactrum pill for the record. I tell him not to do it in fear of choking but he doesn't seem to have any trouble at all and besides, choking is the least of his worries.

Kolton and Caidence have been enjoying their last week. Mom went away to Las Vegas to party for a week (though she says she's at "Training") and Kolton has been more then happy playing with Uncle Stevie and Grammie for the week. Even Great Gramma came out to visit. Steve and Kolton pretty much build race tracks all day and Caidence pretty much destroys them all day. Everyones having a good time. Kolton also helped me paint mommies room and put in a new bed, sheets, pillows, the works. This was all a surpise...that is before he told her last night on the phone!!! Kids aren't too good at keeping secrets.

Caidence started to walk this past Tues. She's taking 5-6 steps at a time now before hitting the ground. Of course she still won't perform on command but she's getting the hang of it none the less. Melissa knew it would happen while she was gone but oh well, they say you can't hold back progress.

Kolton is still walking around with his fishing trophy. He's the MAN!

Saturday, April 16, 2005 8:28 PM CDT

Today was a great day!! The opening day of Pennsylvania's trout season was today and at 3 years old Kolton was set to become the youngest trout angler in history! I woke him at 6am sharp (he promptly fell back to sleep twice). And after some coaxing I finally lured him out of his warm bunk. We left for the pond by 7am and arrived on time at 8am. This was a small pond that holds a kids tournament every year. They give prizes for the first fish caught, most fish, and biggest fish.
We got signed in and set up to fish. Kolton was pushing me hard to get his hook baited. He was saying "C'mon dad!" "This taking forever!". Typical kid! I finally finished and cast the line out for him. I handed him the rod and within seconds his bobber was under the water. The fight was on but the trout was no match for Kolton's brute strength. He was getting bites right and left but had trouble hooking the fish. Finally he hooked another one and a big one at that. Everyone came to admire his 14.5" brook trout and he was proud. It ended up that it would be the biggest trout caught on the day and Kolton received a fine trophy and a standing-O for his effort. He caught a total of 3 trout and missed about 15. We brought all the trout home to show Mommy and eat them for supper. He had a ton of fun and I'm sure we'll do this many times more down the road. Check out the pics on the other page.

Tuesday, April 12, 2005 4:19 PM CDT

As you can see from the photo page we spent last weekend back in Pittsburgh. The weather was spectacular so the K-man and the bug (Caidence) got to spend loads of time outdoors. Kolton did a ton of running around with Nana during the afternoon and destroyed Grammies house in the morning and evenings. Caidence pretty much screamed the entire weekend. We did have one eventful hour Saturday night when Kolton got very sick in the stomach after smelling Grammies meat balls! (Note to self, avoid grammies meat balls at all cost). Actually, he ate a bunch of marshmellows on an empty stomach which is never good. He threw up 4 times at about 9pm and then passed out on my shoulder. He had a long day. Later that night he managed to fall out of bed too so thing weren't looking up. Sunday came and he felt great as I expected. It was busniess as usual. It's funny how he handles throwing up like it's no big deal. He's done it so much that he just tosses it and moves on to whatever else he was looking to do.

Starting round two of Accutane today so the mood swings will return as well as the dry skin. None the less he enjoys the pill taking experience so I guess it's all good.

Wednesday, April 6, 2005 2:50 PM CDT

Hello everyone on this fine 75 degree spring afternoon! It’s nice to see that the weather is finally turning around to spring. Kolton has been enjoying some fine outdoor action the past 2 days. Events for the day have included making bubbles, kicking balls around, kicking Caidence around (oops, should have left that one out), riding his new bike, street chaulk, and playing in the sand box. His face is finally returning to normal (dryness is going away) following his first round of Accutane. He’s also less moody. Not much else to say about him and as I like to say…No news is good news is this journey!
Caidence Lynn is venturing into new territory these days. She took her first step and balance the other day. I was the only one to see it and of course she won’t do it again as she loves to make my look like the fool. Her only form of communication these days seems to be screaming. There’s happy screaming, mad screaming, laughing screaming, and crying screaming. Basically there’s a scream for every mood around. When she’s not screaming (very rarely) she is saying Buba (Applebyish for Bottle) over and over until my better half or I deliver the goods. The girl likes were bottles. She is also shaking her head “Yes” all of a sudden as well. It’s a very pronounced “Yes” so it looks too cute on a 10 month old. She’s a doll baby!

And finally, Melis and I wanted to thank everyone for all that has been done for us as a family. We’re not in the best position to make everyone feel as though they’re appreciated and being isolated from friends and family in Pittsburgh (while we’re in Allentown and Philly) hasn’t helped our cause but be sure to know that there is no way we would have been able to get this far into this process without the love and support of all of our friends and family. Thank you for your donations, thank you for your gift for the kids, thank you for your help, thank you for “Kolton Fest” and all the hard work everyone put into it, thank you for following here, but most of all thank you everyone for your continued prayers and verbal support. It all means more to us then anyone can imagine. So often through these types of struggles folks begin to relax and forget about the situation at hand. There’s always that initial shock of “Oh my gosh!” but after time things get back to normal and fewer and fewer people “typically” remember and care. Not with this group. The level of support has not changed since the beginning and if anything it was strongest as we neared the end of major treatment. I’ve received many emails as of late from folks I just didn’t expect to hear from regarding Kolton and it really makes you happy to know everyone out there is still praying and hoping. Let it be known that this battle is far from being over at this point. It’s just really nice to know that we’re not battling it alone. Melis, myself, Kolton, and Caidence are blessed to have all of you in our lives. Thank you everyone.

Wednesday, March 30, 2005 10:15 AM CST

It's Zachary again, apparently maybe my lovely wife has indeed retired from the journal updating busniess! I can understand as it's not a very profitable venture.

Kolton finished up his last day of Accutane yesterday and for the next 2 weeks. Apparently he's going to miss taking his pills as I caught him chewing up his 10mg Accutane tab last night. This IS NOT standard protocal for taking Accutane but apparently it tasted pretty good because he was in no hurry to stop chewing that thing. I quickly explained that this is not the way to go and we went back to the good ole' fashion "drink it with water" method. It's good we're done with this for now as his face is really getting dry and flaky and no amount of moisturizer could stop it altogether.

Kolton received an amazing invitation today. A college friend of mine that works in the "Sports Industry" contacted me and extended an initation for Kolton to meet NASCAR driver Jeff Gordon a few days before the race in Dover, DE in June. Kolton is a HUGE Gordon fan and he was very excited when I mentioned this to him. It's not too far down there (maybe 1.5-2 hours) but should be well worth it. It's not a done deal yet but the offer was an amazing one for Kolton none the less. Kolton might faint!

On a side note, I just wanted to mention the my daughter is just the most beautiful thing on earth! Those pictures Melissa posts have me ready to pass out. Stunning!

Thursday, March 24, 2005 2:58 PM CST

We’ve been at this treatment for just over 10 full months now so I figured it was about time that I (Zak) update this page for a change. I will not be replacing the previous author (who just so happens to be my beautiful wife and the most wonderful women on earth) but instead just filling in every now and then.

Kolton is 1 full week into his Accutane treatment and he has enjoyed every second of it. Apparently Accutane is a lot of fun according to him and he loves seeing how fast he can swallow the 10mg pill followed by the 40mg pill. I seriously doubt I could down those things any faster then he does. I’m not sure what to currently be more concerned about, his cancer, or him choking on his Accutane while showing off! Either way, he really takes his medicine well. His face and lips are already getting pretty dry, which is a normal side affect of the drug. Melissa is always sure to rub lots of Arbonne skin lotion all over him continuously. Kolton has 1 more week of Accutane before we take 2 weeks off. The treatment is a 2 on, 2 off cycle for 6 months. Blood work will be done monthly.

We visited Pittsburgh over the weekend to see the grand folks, uncles, and aunts. Kolton had a fabulous time shuffling between Nana’s and Grammy’s house and pouted hard when it was time to leave on Sunday. It’s been since last June since we were last in town but he remembered everything as if it was yesterday. Caidence had a great time in her new surroundings. She did a lot of exploring and as usual the stairs were her favorite spot. Besides for that she likes to try to get into any other life threaten situation a home can provide as well. She will surely be a cliff jumper when she’s older as she is quite fearless. We were upset that we missed the opportunity to see our great grandparents on the Appleby side but sometimes Mother Nature doesn’t see fit to meet the best-laid schedules. Grandpa… Melissa, Kolton, Caidence, and myself just want you to know that we think about you each day and hope you feel better sooner rather then later.

Thanks to everyone who signs the guest book. Melissa may not admit it often but she LOVES it when people sign that thing.

Thursday, March 17, 2005 10:04 AM CST

Hello Everyone...sorry it's been awhile. Kolton is doing well. We had some appointments this week. On Monday we had a follow up with Dr. Leinweber(radiation oncologist). He didn't have a whole lot to say except no news is good news.

We were at CHOP on Tuesday to see Dr. Grupp to discuss the start of accutane. I was very anxious to start it. This past week seemed more stressful for me for some reason. I really didn't like having to wait to start the accutane. It's nice nearing the end of treatment, but it's also more and more scary each day. Everyday is a blessing, but with the long wait for the "cured" status there is a continuous heavy weight on our shoulders.

Kolton had to have bloodwork done at his appointment. It was a stick unfortunately and he was pretty upset. At times like that we definately miss his central line.

Kolton started the accutane yesterday. They are 2 pills. We weren't sure if he would swallow them but he's able to. I'm so glad because that means that he'll receive every every last bit of each one rather than dissolving them, etc. I was so excited that he swallowed them that he also got very excited. He called everyone and wanted to take them all day long! He has to take 2 pills in the morning and at night for 2 weeks on and then have 2 weeks off for six months.

While we were at CHOP on Tuesday I met another little boy with neuroblastoma. He is doing great. He finished his accutane last October and his scans are still clean! It was wonderful for me to meet and talk to someone who is winning the fight against this terrible disease. I would definately like to keep in touch with them as it gives me hope that this battle can be won. It's so hard to believe when the only children I know and heard of haven't beat it or continue to fight. I would be surprised if God isn't sick of hearing me praying and pleading continuously. Please keep Kolton in your prayers. Even though he is doing so well and has responded so well to his treatment, until we hear the magic words we will continue to pray and fight.

Thank you to everyone who signs the guesbook. It's great hearing from you!

Sunday, February 27, 2005 8:28 AM CST

Kolton is doing well. I'm not sure if you can tell in the pictures, but his hair is growing very quickly. He seems to feel chilly less and less these days also.

He had a great week this past week. Nana and Aunt Phil were here visiting during the week and Uncle Jas and Sara came over the weekend. He's had quite a blast!!

Friday, February 18, 2005 9:18 AM CST

Kolton is doing well. He isn't as sleepy anymore and has more energy. He is eating very well now too. He has a new favorite food...shrimp! I'd have never guessed. His hair is coming back quickly too. His eyelashes and eye brows are getting so thick. He looks so cute!!

The only concern we have now is the fact that he isn't regulating his temperature very well. He will be feeling well one minute and the next he's really cold and wanting covered with a blanket. We mentioned it to the Dr. and they drew some blood to check his thyroid because the scans he had done with the radioactive dye could have messed with his thyroid. We gave him drops to protect it, but sometimes it doesn't matter. They were only able to do one test and it came back normal, but they will do more thyroid tests the next time he needs blood drawn.

Oh ya, something else I don't think I mentioned before....Kolton is potty trained now!! A few weeks ago I went to change his diaper in the morning and he proclaimed...me no wear diapers anymore. I thought GREAT!! He has done great and rarely ever has accidents! It's wonderful! He was almost potty trained before he got sick, but after it just wasn't happening.

Caidence is doing well. She is crawling so quickly and is standing more and letting go for awhile. I even thought she was going to take a step the other day. Her and Kolton are so cute together. She just adores him.

Friday, February 11, 2005 5:08 PM CST

HOORAY!!!!!!!

Kolton had his central line removed this morning! We went in at 8:30 this morning and he was put to sleep and had it removed in the OR. He was excited when he got home and wanted to take a bath. It's been a long time since he was able to get a normal bath without having to have his tubies taped and be careful not to submerge them. He was so cute.

I'm so glad to be done with his IV antibiotics. Hopefully Caidence will sleep well tonight and we can get some solid sleep. Caidence is still fighting her double ear infection. She is on her second round of antibiotics and I'm not sure they're taking care of it this time either.

So now we go to the clinic in two weeks locally for counts and exam, and two weeks after that we go down to CHOP to meet with Dr. Grupp and Kolton will be started on the accutane(retinoic acid) medication. The high dose accutane has been found to kill neuroblastoma cells on the microscopic level. He'll be on that for six months and then he'll be done with treatment. He will also have scans done every few months.

Saturday, February 5, 2005 3:28 PM CST

Kolton has completed 5 of his 6 days of localized radiation this week. He will finish on Monday morning.

I received a call from the nurse at the Onco clinic on Thursday that something showed up on his cultures(bloodwork) from when he was in the hospital the day before, so I had to take him to the clinic and have more cultures taken. Yesterday they called and the same results were found so we had to start him on IV antibiotics at home. He has to take vancomycin every six hours and because he had a reaction to it during transplant we also have to give him benadryl every 12 hours. It's somewhat hectic because not only do we need to stay on schedule, but you need to take the medication out of the fridge an hour prior to hooking him up to it. So, we need to get the medicine out of the refrigerator, an hour later hook him up, and an hour after that disconnect him and flush the line. It gets tiresome when you're doing that in the middle of the night along with Caidence waking up a few times. Not much quality sleep will be had for the next ten days.

Then..the next issue is the fact that he is scheduled to get his line out on Friday(7 days after starting the antibiotics) and he is supposed to be on the antibiotics for 10 days. They may want to keep the line in a few extra days or maybe culture him again late next week because we can't stop early if there's still infection there because it can be very serious when there's bacteria in the blood.

I guess Kolton wanted one last round of IV antibiotics before taking out his line. Hopefully there's no more fevers or admissions for awhile. We're enjoying our time here at home.

Wednesday, February 2, 2005 8:21 PM CST

Kolton’s localized radiation was started on Monday morning and he’s been going each morning. He cries whenever he’s being put to sleep, but it’s not as bad as when he had the total body radiation during his second transplant. The radiation itself only takes about 20 minutes but putting him to sleep and waking him up takes a bit longer. We are usually there for a few hours.

Kolton is feeling well. He has plenty of energy and is eating well, but yesterday afternoon he started spiking a fever. By 6:00pm it was high enough that we needed to be admitted and given antibiotics. So, unfortunately we spent last night and today at Lehigh Valley Hospital. We really thought or should I say hoped that we would never be spending more time there. Oh well. His fever was its highest at 4:00am this morning at 102 degrees. This afternoon it went down and nothing grew on the cultures yet, so he was able to be discharged this evening. So, we are at home now and will be returning tomorrow morning for radiation.

Monday, January 24, 2005 5:45 PM CST

Kolton did well this morning. We spoke with the Dr. first thing and discussed how Kolton reacted to the propofol(anesthesia drug) during his total body radiation during his second transplant. So we gave him some versed to make him sleepy first before giving him the medicine(propofol) that put him under. It went much better than during TBI when he would scream in terror as he went under. Although, it still isn't a very good feeling seeing him laying there under anesthesia. They put the tattoos on to mark the areas to radiate and took a bunch of scans to be sure everything lined up right. We were there for a little over two hours.

They also took a culture of the insertion site of his line because it is red and a little yucky looking. It looked a little red yesterday so I changed the dressing, but it looked a little worse this morning. I hope he doesn't get an infection. We only need the line for another two weeks or so and I'd hate to lose the line now and have to get a PICC line for that short of a time. He's been through enough.

The oncology radiologist said that they decided to radiate the chest and abdomen, but when I called Dr. Grupp this afternoon to be sure everyone was on the same page he told me that he'd have to call me later because he hadn't seen the scan yet! Oh my. I'm glad the treatments don't start till next Monday so we can be sure everyone is in agreement and the best decision is made.

Wow is Caidence motoring around now! She crawls everywhere. Kolton can't get away now. I took her to the pediatrician this evening and she has an ear infection. That's just one more medicine I need to remember to give. Speaking of which I just remembered I forgot to give Kolton his bactrim this morning. He has to take it twice on Mondays and Tuesdays each week. It's to protect him from some type of pneumonia.

We got more snow this afternoon. The roads were terrible when I took Kolton to Zak to bring home and Caidence to the doctor's office.

Added some new pics.............

Thursday, January 20, 2005 8:58 PM CST

Kolton has had a busy week with doctor appointments. The clinic appointments are usually pretty quick, but on Monday we were there for over two hours with nothing much happening.

On Tuesday we met the radiation oncologist who will be doing Kolton's radiation. It was quite a challenge to talk with him with the two kids in the room. They both had had enough by the time he came into the room. He seemed pretty good and was good with the kids.

Yesterday we went down Philly to CHOP to get his radioactive dye injection for his scan today. He could taste it in his mouth and didn't like it at all, he cried pretty hard. For once we were in and out of there fairly quick, which is very unusual for any appointment at CHOP. The traffic was awful though because it was snowing and it took us about three and half hours to get home.

Today we were back down CHOP for the scan. Kolton did great. They had a Power Ranger movie that Kolton enjoyed watching during the scan. It takes about a half hour, and they tape him to the table to keep him from moving. I couldn't imagine being taped down, he's quite the trooper.

Kolton only has two appointments next week. We go on Monday to get everything set up for radiation. They will take forms of him and tattoo him because everything has to be exact. He will be put to sleep to do this. The appointment should take a few hours. And then he has a clinic appointment to check his labs later in the week. His radiation will be started on the following Monday.

Nana and Bubbup came out today for the night to visit because there is a snowstorm coming in this weekend. Kolton is having fun with Nana and Bubbup. Kolton is also very excited for the snow coming. He wants to build a snowman and have snow ball fights. I'm not sure where he heard about snow ball fights, but it's cute hearing him talk about it.

Caidence is getting very good at crawling. She keeps getting into everything Kolton does. It's cute, although he doesn't agree :)

Sunday, January 16, 2005 7:09 PM CST

Kolton is doing well, although we have a very busy week coming up. We got the results of his CT scan and there is still residual tumor showing in the chest area, which is the same as before the transplants. So, they would like us to get an MIBG scan to see if any of it is active cancer. It wasn’t before transplant and we don’t anticipate it now, but this scan will aid in their decision on whether to radiate the chest area or not.

We will be going to the clinic here in the Lehigh Valley tomorrow for labs, and Tuesday we are scheduled for a consult with the radiation oncologist who will be doing Kolton’s radiation in two to three weeks. Then Wednesday and Thursday we will be going to CHOP. On Wednesday we will go down there for the injection of the radioactive dye for the scan on Thursday. Busy, busy, busy. Ugh.

This weekend Uncle Jason and Uncle Anthony came to visit. Nana and Bubbup couldn’t come as planned because my Mom unfortunately got sick. Kolton had a lot of fun playing and also opening tons of Christmas presents. All of the family sent their Christmas gifts with them. There is one particular gift that needs mentioning…..the electric drums : ) Aunt LeAnne~ I can’t wait to get your first grandchild a set for Grandma’s house! Just kidding, I can handle any toy as long as it’s not in a hospital room!! : )

Caidence update~
She started crawling on Friday! It was very gradual for a few days, only crawling very small distances to get to Kolton or something he was eating. But on Friday she was crawling after the vacuum!! Now the fun starts. I’ll need to start baby proofing everywhere again.

Thursday, January 13, 2005 8:27 AM CST

Kolton is doing very well. He hasn't gotten sick in a few days and has more and more energy. His legs seem to be reconditioning well and they don't bother him as much. Tonight will be his last day of his pain medicine wean. He will be very glad!

We went to CHOP on Tuesday for a clinic visit and a CT scan of the chest and abdomen. We went to the clinic first and had labs drawn and saw the nurse practitioner. His labs were good so he didn't need a transfusion. We then went to get his CT scan. We waited over two hours! The whole day was frustrating because Kolton needs to be in isolation and not around other people, especially now during flu season. When I went into the waiting room (with Kolton waiting in the hallway)and told the receptionist that my son is post transplant and needs to be in isolation, and I wanted to know if there were any open rooms available. She looked at me giving me the look like why are we so special. It's very frustrating, but we need to advocate for Kolton and not sit him in a room with at least ten other kids, some of which were clearly sick. So, we were told to go to the unit and see if they had any rooms. They only had a half room available, so we waited in a corner sitting area of the hallway. I figured the air was moving more there rather than sitting in a room with other people. It was a shame though because Kolton had to keep his mask on almost all day. I felt so bad for him.

After the CT scan we met with Dr Grupp and he examined Kolton. Everything went well. He will be in touch with the radiation department here in the Lehigh Valley to set up radiation. That should be in two to three weeks. And a few days after radiation Kolton will have his central line pulled!! That will be so wonderful for him. No more dressing changes, flushes everyday, and he'll be able to take a normal bath.

I'm going to change the pictures..........

Thanks to everyone who signs the guestbook :)

Saturday, January 8, 2005 6:53 PM CST

Kolton is feeling a lot better today. He only got sick once and has more energy. Uncle Stevie and Grandpa came last night and Kolton had fun playing Power Rangers with Uncle Stevie today.

Kolton received a special package yesterday with a stuffed lion in a santa suit that had a recording in it. It said,"Kolton, your Wish has been granted ........... Woodstone Golf Club is sending you and your family to Disney World!!!!" So, this fall when he's allowed to be in an airplane(because of isolation), we will be going to Disney World. This is through the Make-a-Wish Foundation. This trip will bring many wonderful memories for us all to treasure, and after this past year we are all looking forward to it very much :)

I took some great pictures in the past few days, so I'll change the ones I posted a few days ago soon.

Guess who's coming to town tonight..........yep, Santa!!

Thursday, January 6, 2005 7:26 PM CST

Last night we had to wake up Kolton twice for his medicine and once he got sick five minutes after so we had to give it to him again. It wasn't fun for either of us.

Kolton's day was started out a little rough. He was pretty sick most of the morning, but it slowed up a little in the afternoon. He ate and drank quite a bit today, but had a difficult time keeping any of it down.

I'm hoping for a better night and day tomorrow.

Wednesday, January 5, 2005 9:38 PM CST

I am writing from Home Sweet Home!!!! It’s so nice to be back. Kolton was discharged today around 10:00am and we awaited our chariot. Zak came a little before lunchtime. Kolton was very excited, although he slept most of the way home.

Since we got home Kolton ate a lot, but didn’t keep much down. He felt pretty lousy most of the evening. When we got home he was all excited when he saw Christmas presents in the living room for him, but only felt up to opening a few.

Zak and I spoke with Dr. Grupp before we left today and discussed what to expect coming up. We will go to the clinic on Monday to check his counts to make sure he doesn’t need a transfusion, which he shouldn’t need. Kolton will then have a scan on Tuesday to be sure we definitely don’t want to radiate where the tumor was in the chest area. He said he’s 95% sure he doesn’t want to, but he wants the scan to make him 100% sure. He will have localized radiation in about three weeks and then after that he will undergo accutane treatment, which is an oral medication taken for two weeks on and two weeks off for six months.

We also discussed relapse with Dr. Grupp. He said there’s 3 main time periods to look at. He said the highest occurrence is within the first 18 months, and then 18 to 36 months, and after five years he considers him cured. He said that Kolton had the best response and at this time is considered in remission, although he said it doesn’t change the prognosis of 56% survival rate. That number seems so low, but nationally the average is 42%, but at Children’s in Philly they have a better protocol and therefore a higher survival rate. I’m so thankful he’s being treated there. I believe we’re living in this part of the state for this reason, and he’s going to beat the odds.

Please keep Kolton in your prayers.

Tuesday, January 4, 2005 8:12 PM CST

Quick entry...........

Good news~~we're heading home tomorrow. Kolton is drinking more and eating some too. He still gets sick quite often, but we're hoping he'll keep enough down to stay hydrated. I think each day will be a bit better for him. We will continue his pain medicine wean by mouth at home. Let me tell you....last night wasn't fun waking him up at 2am and 6am to give him his pain medicine.

Well, gotta run. I'm trying to get him to bed a little early.

Monday, January 3, 2005 6:41 PM CST

Today Kolton was switched to an oral pain medicine(oxycodone) and was disconnected from the IV pole most of the day. It is such a wonderful feeling to be able to pick him up and swing and carry him around without the IV pole. It’s one of those things that are taken for granted.

He is doing well with the meds by mouth. His stomach was very upset this morning and he got sick once but by lunchtime he seemed to be feeling better and after that he got sick once more during the afternoon. He had a few bites of a poptart around lunchtime and has taken sips of his blue Gatorade every once in a while. He keeps asking for food, but when he sees it or smells it he doesn’t want it.

I’m not sure when he’ll be discharged. They are still saying tomorrow isn’t out of the question, but I’m a little nervous. I don’t want to have to come back because he's dehydrated.

I’m hoping for an uneventful night, although his oral pain medicine is every four hours around the clock. That should be interesting waking him up to take medicine throughout the night. Wish me luck :)

Sunday, January 2, 2005 4:35 PM CST

Today Kolton has been up and down. He has had an upset stomach and gotten sick a few times, but also is starting to ask for different foods. He wanted a hot dog, but took one bite and immediately spit it out. He just ordered up from dietary some scrambled eggs and root beer. I’m not sure how that one will turn out, but I’m pretty sure he won’t eat that either. He’s only taken a few sips of his blue Gatorade (favorite) today.

The past few days when he’s gotten out of bed to get a bath he was unsteady and he complained that his legs hurt. I’m not sure if it’s because he’s been in bed for so many days and is weak, or if it’s because of his daily injections that he’s gotten in his upper legs. They are very swollen and bruised. Thankfully his counts are high enough today that he doesn’t need the injections anymore. Hooray :)

The earliest we can get out of here is Tuesday, but I think that will be pushing it. From the day when he really starts to drink, the next day his pain medicine will be switched to an oral one and they will need a day to be sure he can handle that. So, I’m just hoping it’s this week the way we’re going.

Thank you to everyone who signs the guestbook, I really enjoy hearing from everyone.

~~GO STEELER’S~~

Saturday, January 1, 2005 6:26 PM CST

Kolton woke up this morning feeling much better. We cut his pain medicine in half again today. He got sick a couple of times, but is starting to drink a little bit. We told him that we can’t go home until he starts drinking. He is finally starting to play, but he seems to get tired quickly. He continues to need his injection once a day to help his blood counts recover, but we hopefully will be able to stop that soon. Hopefully each day will bring us closer to his recovery and going home.

Happy New Year!

Friday, December 31, 2004 7:30 PM CST

Kolton has taken a step back today as he has been getting sick all day. He slept for most of the day only waking to get sick. He was feeling sick this morning but not too bad. I left around lunchtime with Grammy and Caidence to get out for awhile and apparently he went downhill after lunch. Zak said he got sick a lot during the afternoon and since I got back a little while ago he has been sleeping and waking up feeling like he’s going to get sick every so often.

Hopefully he starts feeling better soon and we can start this New Year off on a better note. Wonder if Zak and I will even stay up till midnight. Please keep Kolton in your thoughts and prayers.

Happy New Year’s Eve!

Thursday, December 30, 2004 4:28 PM CST

Kolton is doing a lot better today. He doesn’t seem to be having much pain as we continue to wean his pain medicine. He has nausea on and off and gets sick every once in awhile from the healing of the mucositis. He also isn’t drinking or eating anything yet. I think he took one sip of juice today. He won’t be discharged till he starts drinking enough to keep hydrated at home.

As we near discharge and are close to the end of his treatment I am starting to become more and more nervous and scared. During treatment there is progress being made, but after his treatment is done it’s all in God’s hands. Scans can never be 100ccurate and as I found during our two weeks at home between transplants every sniffle, tummy ache, or later down the road a fever is going to scare me to death. Kolton had some belly aches during our two weeks home and all I could think of was the tummy aches he had when we didn’t know he had cancer. Zak had to remind me that the tumor there was removed and he’s fine right now. It is so terrifying. At the same time, I can’t wait to put this year behind us and have our family all in the same house for more than a few weeks at a time. It will be nice to be “normal” again. I suppose life isn’t fair and neither is cancer. I just never thought we’d be dealing with the cancer part.

Wednesday, December 29, 2004 2:57 PM CST

Kolton is doing better. Each day he gets a little better. Yesterday he opened his gifts from Santa and played some. It’s wonderful to see him playing. We are weaning his pain medicine down slowly as he is still healing from the mucositis and uncomfortable. His main discomfort now is nausea from the mucositis healing. As it heals new cells form and the old dead ones slough off making him feel sick. We are giving him anti-nausea meds, but he got sick once today.

We are anticipating getting out of here early next week. We are waiting for him to start drinking more and to be weaned off his pain medicine enough that he can be switched to an oral wean. He is still getting a constant dose. He needed a platelet (blood-clotting) transfusion today. He gets blood and platelet transfusions every few days. His counts are high enough now for discharge. Although when we go home he will still be on isolation for a few months, and if he gets a fever anytime in the next six months he will be admitted immediately. I also found out yesterday that if he gets the chills it’s a medical emergency situation for him because that usually means a (gram negative I think) bacteria infection which is very serious for him.

Kolton woke up yesterday with an awful bloody nose from his platelets being low. I had never seen one so bad. It took three of us to hold him down so I could pinch the bridge of his nose. It was coming out so much and not clotting that a medicine was ordered called thrombin to put on a q-tip and put up his nose. Thankfully for him he stopped bleeding a few minutes before it arrived to the room.

The night before his line became loosened and was bleeding all over the bed again. I was glad I got up to change his diaper and seen the bloody sheets. I clamped his line till the nurse came in and she changed all the lines and took some labs to make sure he didn’t lose too much blood.

Can you believe I hit my foot on his bedside table yesterday and I think I broke my toe? It’s all swollen and purple. Lovely. I think all I can do is tape it??

Caidence update:
She started sitting up yesterday and has been rolling around for awhile. She is a girl on a mission. She usually rolls toward Kolton’s train table or container of matchbox cars and then boosts herself up on one elbow and reaches in to grab for toys. She is also getting close to crawling. She gets up on her knees and rocks.

I had Caidence sitting on the bed today behind Kolton and I asked her where Kolton was and she reached forward and grabbed his shirt and started pulling him back. It was so cute.

Well, I guess I better head back in as I’m sure he’ll be calling for Zak and I soon as we are both out here on the computers.

Monday, December 27, 2004 4:51 PM CST

Kolton is a smidge better today. He is still not feeling well, but we are giving him medicine(benadryl) to help him sleep away the uncomfortable days. His counts are coming up great, so we were able to stop his antibiotics by mouth today, which is a huge deal for him. He continues to need the shot each day to help his counts recover. It's funny, I'm the nurse and he likes how Zak gives him the shot...I don't mind one bit :)

Hopefully we can get out of here next week. Please keep Kolton in your thoughts and prayers as he deserves a quick recovery from the mucositis.

Sunday, December 26, 2004 4:08 PM CST

Kolton is still feeling awful. He slept most of the day. Today is the first day without fevers and nothing grew on the cultures which is good. His counts are coming up slowly, but I guess it's not making that big of a difference because the mucositis is so bad. I'm hoping he starts feling better soon and we can start to see the end in sight.

Saturday, December 25, 2004 11:40 AM CST

~~~~~~~~~Merry Christmas~~~~~~~~

Kolton is enduring his worst Christmas ever and we pray that this will be the worst one ever for all of us. Kolton had an awful Christmas Eve as his pain and discomfort we’re at the worst yet. He is on so much pain medication that he is out of it somewhat and was just yelling a lot yesterday. The night before he and I were up all night. He couldn’t sleep as his medication makes him drowsy but also restless and unable to sleep deeply. He would fall asleep for a few minutes and then he would twitch and wake himself up. He only took an hour nap yesterday too. Yesterday we started playing with his pain medication to try to have it where he can get pain control and also mostly coherent and restful. We went down on the dose a tiny bit and he slept more last night. He was up a good bit but as long as I was in bed with him he was able to put himself back to sleep rather quickly.

Kolton woke up to a stack of gifts from Santa. The night shift nurse brought them in around 4:00am. I had no idea they gave so many gifts to the kids. It’s really touching. He didn’t want to open anything this morning as he felt so sick, but a little bit ago he wanted me to open one for him. He said he’ll play with it later. He also didn’t want to see Santa when he came around. So, they took a picture of him outside Kolton’s door and gave it to us.

Grammy, Grandpa, Uncle Stevie, and Caidence will be here soon. I hope Kolton feels better later and will want to open his presents and play some. I’m also looking forward to the ham dinner Carol made and is bringing, yummy :) It will be nice to not have cafeteria food or Chinese takeout.

More than anything I’m looking forward to the coming year and praying for happier times and an extra special Christmas next year with all of our families together and healthy.

May you have a wonderful Christmas.

Thursday, December 23, 2004 6:38 PM CST

Today has by far been Kolton’s worst day yet. He was up a lot last night, he was uncomfortable and wanted me to lay with him. So, I would lay with him till he went to sleep and then I’d move back over to my couch because we’re not supposed to sleep in bed with the kids during transplant. So, needless to say I didn’t get much sleep because he kept waking back up.

He was in a lot of pain today. We went up on his pain medicine (fentanyl) twice today. He keeps hitting his button to give himself more medicine because he keeps saying it still hurts. It has a lockout so he can only get a certain amount, and it’s a good thing because during an hour he has hit the button up to 89 times. He is slurring his words because it hurts to talk and the amount of pain medicine is making him sleepy. He wants held continuously. I don’t’ think I’ve ever laid in bed so much in one day without being sick myself. I couldn’t even get a shower this morning because he would just cry when I wasn’t holding him. I was thankful for the few minutes to go to the bathroom during the day. Zak is in there now holding him. He’s enjoying it, Kolton is very much a mommy’s boy when he doesn’t feel good and Zak wants to be there for him too. I may be the comforting one, but Zak gets lots of smiles out of him.

Kolton’s labs are ok again today. He will most likely need platelets again tomorrow but his red cells are holding. He also has 10 cells again today. Hopefully they will pick up quickly to help heal his mucositis so he may have at least somewhat of a decent Christmas. Santa will come here and the night shift nurse will deliver the gifts in the middle of the night, but Santa wants to see Kolton’s tree at home too so he will come back to deliver more toys after he gets home. The toys here are from toys for tots I think. I hope he’s feeling better because he received a gift today but was too sick to want to open it.
It’s been nice, there have been carolers a few nights this week singing out in the hall. It makes me teary-eyed but very touching.

Well, gotta go I hear him crying.

Wednesday, December 22, 2004 6:16 PM CST

Only a minute to write.....Kolton is feeling awful today and wants held continuously. I snuck out for a minute while Zak holds him so I can eat dinner. He is in a lot of discomfort. We went up twice on his pain medicine today. Diarrhea has let up though thankfully. He's still running a low grade fever, but cultures are still negative.

His labs are good today and he is starting to engraft and has 11 cells today!!! Hopefully they keep coming up and he starts feeling better soon :)

Tuesday, December 21, 2004 7:55 PM CST

Update from earlier....

Kolton's CT scan was normal, so we'll just continue to monitor him.

Tuesday, December 21, 2004 4:40 PM CST

Can I just say…will today end please? Kolton is feeling terrible still. They are going up on his pain medicine. His diarrhea is so bad that I think that’s all I’ve done ALL day long is change diapers. I don’t even get to finish washing my hands and he’s asking me to change him again. He is still running a fever, but nothing has grown on the cultures yet, thankfully.

His labs are off today and they are a little concerned. His hemoglobin went from 11.4 yesterday to 7.7 this morning. They repeated it and it came up the same. Normally what that would mean is he’s bleeding somewhere internally, but other than small streaks when he gets sick there’s no blood that we can see. He had a headache this morning and I remembered that after he watched power rangers last night he head butted Zak really hard and made himself cry. Well, his platelets(blood clotting) are super low and they are concerned he may have a bleed. They don’t think so because clinically he’s the same and he would be showing neurological changes if there were a bleed, but they ordered a CT scan just to be sure. Well, here we are six hours later and no CT, there better not be a bleed or they’re going to see one nasty mom for waiting so long. He got platelet and blood transfusions today, so they will check his labs again tomorrow morning.

I’m so glad Zak is here, I desperately need a few minutes. I feel like today will never end. Every time Kolton starts falling asleep someone comes in the room to do something, whether it’s his nurse doing vitals continuously because of all his transfusions or the cleaning lady or a Dr. or resident. So, he’s tired and cranky and can’t get any sleep.

Please keep Kolton in your prayers, I think we all could use some right about now.

Monday, December 20, 2004 4:00 PM CST

It seems yesterday was his last day of feeling good. After my entry last evening his pain got much worse and I had to have the pain medicine upped to a continuous dose. He was up a few times last night in pain, so I hit his button to give him an extra dose and he was also up at 4:30am getting sick. He slept till almost 10:30am, but when he got up he was in a lot of pain and he also got sick. He’s slept most of the day and we just doubled his continuous and bolus pain medicine doses because he’s in a lot of pain when he’s awake. It's so uncomfortable for him that he won't even swallow his saliva.

Kolton also started to run a fever. It’s up around 103 degrees now. Antibiotics are started and cultures (blood work) were drawn. If something grows on the cultures then they can narrow his antibiotic down from a broad spectrum to something specific for what’s growing.

I just heard him waking up, so I’m headed back in. Oh yeah, last night when I was headed in to watch my favorite movie with Kolton and Zak…..well by the time I got in there Kolton already wanted another movie in, so yet again the Dinosaur movie :)

Pleae keep Kolton in your thoughts and prayers as these next few days are going to be rough on him.

Sunday, December 19, 2004 5:21 PM CST

Well, today is day 4 (admission day is -5 day 0 is transplant day) and Kolton has continued to fight off bad mucositis, and is still eating and drinking a little bit. His throat is starting to become sore, but not enough so that he won’t eat. We will be starting him on IV nutrition tonight to help supplement the candy and goodies that he’ll eat :) . We are also starting his PCA(patient controlled analgesia-pain medication) tonight. He won’t be getting a continuous infusion but only an as needed dose, meaning whenever we feel he’s uncomfortable we can hit the button and he gets a dose of medicine. Most likely he’ll need a continuous dose starting tomorrow but he’s been fortunate to go this long. During our last transplant he had been on IV nutrition for about five or six days already and he needed pain medicine much sooner too. During the last transplant he started to engraft (grow cells) at day 9, so being that it’s day 4 he hopefully won’t get a chance to get that bad. One thing that’s bad already though is his diarrhea. I think I’ve gone through a pack of diapers since last night.

Kolton had a nice weekend playing with Nana and Bubbup. Aunt Rita also stopped in to see the kids today when she brought Grammy back. I’m so glad he was still feeling good and able to enjoy all his company.

I’m heading back into the room, Zak and Kolton are watching my favorite movie…Christmas Vacation.
Please keep Kolton in your thoughts and prayers.

Friday, December 17, 2004 5:52 PM CST

Kolton woke up this morning and was doing great. His breakfast tray came and he was anxious for me to open it to reveal the tasty hospital food(haha). But when he bit into his banana he went to swallow it and screamed in pain. Since then though he's eaten a few select things. He also got sick once today which is the mucositis starting in the gut. Hopefully it won't get bad too quickly.

Kolton received his T cells today. It is a study being done by Dr Grupp, Kolton's primary dr. The thought is that by giving him back his own T cells, it will help boost his immune function against viral infections after the transplant. We were talking to Dr. Grupp while Kolton was getting the transfusion and the study will go over 2 years or 20 patients, whichever comes first. The study is only open to stage IV high risk neuroblastoma kids.

Kolton is now playing with Nana and Bubbup and having a great time. I think he's whooping Nana's butt on the playstation.

Thursday, December 16, 2004 8:21 PM CST

Ahhhhhhhhhh.....to be done with radiation is such a relief. Kolton received his stem cells last night. He didn't get sick as some kids do, but he was terrified as he thought he was being put to sleep. He cried and screamed in terror and no matter what we said he didn't believe us that it wasn't the sleepy medicine. Dr. Grupp pushed it in much faster than they normally would, because he was so hysterical.

Kolton is doing wonderful today!!! He continues to have more energy than this little room can handle. The doctors are very impressed. He also continues to eat and drink great. The longer we go before the mucositis(irritation of the mucosa from the mouth to butt)starts the less time it has to get very bad. I'm hoping he gets a few more days without it starting.

Well, gotta get back in there as he is screaming every 30 seconds for me.

Wednesday, December 15, 2004 4:52 PM CST

~~~~~~~~~~~~Transplant Day~~~~~~~~~~~~~~~

Thankfully today was Kolton's last day of total body radiation. Transport was late again this morning, but we made it there on time. We had a different anesthesiologist this morning and it wasn't quite as smooth, but not nearly as bad as the first treatment. Then on the way back to the hospital the ambulance got pulled over for supposedly running a red light. We were furious. The cop was out in the middle of the road and signaled us to the side. It was so abrupt that Zak and I almost fell on the floor. He was a total jerk and acted like we were a bunch of teenagers out joyriding. I think he heard Zak yelling in the back about having a child with cancer on protective isolation that needs to get back to his hospital room, and he finally let us go. I couldn’t believe it.

When we got back, Kolton slept for a little bit and then got up and played till we had to leave again. He was very angry that he couldn’t eat. All he has been talking about is McDonalds. He is really craving it, but isn’t allowed anything not from dietary or from a sealed package.

This afternoon we had our regular anesthesiologist and it went as usual. He begs not to get the white medicine and keeps telling us how scared he is and then he screams and cries in terror as he goes to sleep. It’s awful as a parent to have to see this done to your child. I stood in the room this morning watching them intibate(place the breathing tube) him and thought to myself how I never in a million years would have imagined ourselves in this position.

We are back at CHOP now and he will be getting his transplant at 6:00pm. His stem cells are being thawed as I write. It’s very anticlimactic as they push them in over a few minutes like regular medicine, but at the same time it was a weird feeling last time. I got the chills and had tears in my eyes as it was done.

Kolton continues to eat and has lots of energy, although his mouth is starting to become irritated a little bit. They may start IV nutrition tomorrow, but I am talking to them about maybe not starting him on 24 hours a day already because he is still eating some and has lots of energy. Once he’s on full IV nutrition he’s connected to the IV pole around the clock except for about an hour to bath him. They may start him with 12 hours, which can be given overnight. We’ll see tomorrow morning.

Well, I’m going to head into the room because they will be here soon with the cells. Hopefully he won’t get sick. Sometimes the kids get sick from the preservative that’s used during storing.

Wednesday, December 15, 2004 4:51 PM CST

~~~~~~~~~~~~~~~~~~~~~~~Transplant Day~~~~~~~~~~~~~~~~~~~~~~~

Thankfully today was Kolton's last day of total body radiation. Transport was late again this morning, but we made it there on time. We had a different anesthesiologist this morning and it wasn't quite as smooth, but not nearly as bad as the first treatment. Then on the way back to the hospital the ambulance got pulled over for supposedly running a red light. We were furious. The cop was out in the middle of the road and signaled us to the side. It was so abrupt that Zak and I almost fell on the floor. He was a total jerk and acted like we were a bunch of teenagers out joyriding. I think he heard Zak yelling in the back about having a child with cancer on protective isolation that needs to get back to his hospital room, and he finally let us go. I couldn’t believe it.

When we got back, Kolton slept for a little bit and then got up and played till we had to leave again. He was very angry that he couldn’t eat. All he has been talking about is McDonalds. He is really craving it, but isn’t allowed anything not from dietary or from a sealed package.

This afternoon we had our regular anesthesiologist and it went as usual. He begs not to get the white medicine and keeps telling us how scared he is and then he screams and cries in terror as he goes to sleep. It’s awful as a parent to have to see this done to your child. I stood in the room this morning watching them intibate(place the breathing tube) him and thought to myself how I never in a million years would have imagined ourselves in this position.

We are back at CHOP now and he will be getting his transplant at 6:00pm. His stem cells are being thawed as I write. It’s very anticlimactic as they push them in over a few minutes like regular medicine, but at the same time it was a weird feeling last time. I got the chills and had tears in my eyes as it was done.

Kolton continues to eat and has lots of energy, although his mouth is starting to become irritated a little bit. They may start IV nutrition tomorrow, but I am talking to them about maybe not starting him on 24 hours a day already because he is still eating some and has lots of energy. Once he’s on full IV nutrition he’s connected to the IV pole around the clock except for about an hour to bath him. They may start him with 12 hours, which can be given overnight. We’ll see tomorrow morning.

Well, I’m going to head into the room because they will be here soon with the cells. Hopefully he won’t get sick. Sometimes the kids get sick from the preservative that’s used during storing.

Tuesday, December 14, 2004 5:32 PM CST

Today was a long day. We were ready for transport at 6:15am to be at Jefferson at 7:00am and they never came until after 7:00am. Everyone was pretty mad. Kolton is very nervous the ride over and is very scared when we walk back into the room. He cries very hard, but I hold him till he goes to sleep which helps a little. After he was done we then had to wait for awhile for transport to show back up to take us back to CHOP.

Grammy brought Caidence down today in between treatments. It was really nice because we hadn't seen her yesterday and we really missed her.

We then left a little after 2:00pm for his next treatment. After he was put to sleep and everyone left the room and the machine was started, an error showed up on the screen and they had to have a technician come to look at the machine. He came and looked, then he went for tools, and everyone was discussing moving Kolton to another room but he was able to fix it rather quickly and the treatment was done fine. But Kolton had to be under anesthesia longer than normal. We then had to wait for transport for over an HOUR after he was done!! Apparently, ten minutes before we were ready to leave their shift was over. So they left!!

Since we've come back Kolton has been doing great. He is so.... hungry. He ate (only some of each though)hamburger, fries, chicken nuggets(minus the breading), fruit cocktail, spaghetti, and chocolate. We are obvliously giving him anti-nausea meds :)

Hopefully the rest of the evening and night will be uneventful. We are definately heading to bed early tonight. I'm wiped out.

Monday, December 13, 2004 6:50 PM CST

One day down....two to go. We got up this morning at 5:30am and were picked up by transport at a little after 6:00am. Kolton was very tired and fairly scared. The one thing that helped him was a portable DVD player I bought before admission. We brought it with us and he watched it in the ambulance and as we waited for what seemed like forever after we got there. We were told to be there at 6:45am and found the doors locked. We went in another entrance and the security told us they don't open up till 7:00am and no one was down there and he couldn't let us down there. So, for about 15 minutes we were in a main entrance hallway for Jefferson with a child that is supposed to be in isolation! He had a mask on but I was still definately not comfortable or pleased with the situation. Finally, another sucurity guard came and took us down and let us into a room there.

The anesthesiologist was a different one than we had met, but ended up ok. His first treatment this morning was awful! We took him into the room and the Dr. told him they were going to give him a little nap....well that scared the crap out of him. Then he used propofol, which was what we expected, but he gave it very quickly into his line and it causes irritation to the airway when given that quickly and it made him cough really bad and he was out very quickly. It looked and seemed awful to us. It looked like he was SO uncomfortable and to me it looked like he was in distress. We didn't know what to think. I left the room crying and we decided that we weren't doing it that way this afternoon. The Dr. came out and spoke with us and said that we can do it however we want later.

When we got back to CHOP at around 9:00am, Kolton slept on and off and then got sick a few times. We gave him some extra anti-nausea meds and we are going to keep them going around the clock till after the radiation is done.

The afternoon treatment wasn't as bad, but definately wasn't fun. I held him in my arms until he was under, but he was so scared from earlier that he cried so hard until he fell asleep. They gave him another medication before the propofol to help relax him and help him not remember falling asleep.
He was ready to come back here right away as soon as he woke up. He hasn't slept this evening, but has been playing and isn't sick like earlier. He definately doesn't feel as good as yesterday.

Well, he's crying for me to come in and hold him..I think he may be feeling sick again.
Hoping tomorrow is better than today and remembering one day down.

Sunday, December 12, 2004 6:13 PM CST

Today was a wonderfully uneventful day. Kolton continues to feel great and has lots of energy. So much so that I almost wish there were more soundproofing to the hallway because it sounds like a zoo coming from our room from Kolton and Caidence :)

Zak and I are glad that the overnight nurses are bending the rules and letting Zak stay tonight because we will be leaving so early tomorrow morning. Transport(ambulance) is supposed to pick us up at 6:15am. Kolton is not going to be happy!! I hope they don't have to strap him down too much...although, maybe we can carry him down….Hmmm. I don't want him to get scared. I know myself that seeing him on the transport bed is going to bring back bad memories for me from when he was diagnosed and we were taken by helicopter here, hopefully he won't remember. Please keep Kolton in your thoughts and prayers tomorrow as it may be a difficult day for him.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

During this difficult time we have received so much support from so many people, not just our friends and family but also special people we have never met. It is incredibly touching and we would like to thank everyone for everything that has been done to help our family. The support has helped in so many ways. Thank You!

Saturday, December 11, 2004 5:54 PM CST

Kolton did well last night and today. He received his chemo last evening and didn't have any problems and will receive it again this evening.

Kolton had lots of company today and had a lot of fun. His Uncle Jason, Uncle Anthony, Uncle Stevie, Grammy, and Grandpa came. He had more new play partners than he knew what to do with. He was in his glory.

Kolton started his meds by mouth today. He remembered all too well from last time and it's a big struggle already. It's all down hill from here as his mouth starts to hurt.

So, Kolton will get chemo tonight and tomorrow and then we will go to Jefferson Hospital twice a day Mon, Tues, and Wed for total body radiation. We found out yesterday that Kolton will be the first child from here to go to Jefferson and have total body radiation with anesthesia. Apparently, up until now they sent all the older kids there and the young ones that needed anesthesia went next door to the Hospital of the University of Philadelphia with an anesthesiologist from here. When we went there last week we met the anesthesiologist and he was great with Kolton and we are very comfortable with him. So, we'll see how it goes. Zak and I are very glad that we both are able to ride over in the ambulance with Kolton.

Hoping for a quiet evening :)

Friday, December 10, 2004 6:30 PM CST

Well, we're here. Kolton doesn't really seem to mind because he hasn't had to do or take anything yet. He just got connected to the IV for hydration, and will get his chemo around 8:00pm. The drug that he gets doesn't tend to have much nausea, just mouth sores. I'm not sure that's a fair trade.

He's been having a fun time though since we arrived. I brought a christmas tree and lots of decorations. It's very festive in our room.

Well, gotta get back in before Zak has to leave.

Thursday, December 9, 2004 8:08 PM CST

Well, we head in tomorrow morning.....Transplant #2. We're just about packed, but definately not ready to go. Kolton is doing excellent right now. He has more energy than most kids his age, or at least it seems :)

He will have chemo tomorrow, Sat, and Sun; and radiation then Mon, Tues, and Wed. And then on Wednesday after his second radiation he will get his stem cells. I'm not sure when he will get his T cells back though.

We're told the mouth sores will be worse this time with the chemo drug he will be getting. Hopefully they wont' be that bad.

I'll try to post updates each day for everyone. I'm headed to bed soon for one last night in a comfy bed.
Please keep us in your thoughts and prayers....

Monday, November 29, 2004 6:35 PM CST

Finally an update.....

Kolton is doing really well. He is eating anything and everything, drinking well, and has all the energy he had before the transplant. It took him a few days to bounce back totally, but is doing really well. We also finished his pain medication wean on Thursday, much to his delight. The past two days he's had some bowel issues and some abdominal discomfort but nothing serious.

We were in the clinic twice last week and his counts were good enough that he didn't need any transfusions. We are scheduled tomorrow in the clinic and Wednesday at Jefferson Hospital for the radiation consult. I am also trying to get him an eye appointment before we go in on the 10th. An eye exam is required prior to the second transplant because the radiation can do some damage to the eyes and I suppose they want a baseline.

Kolton had all the grandparents and uncles out over Thanksgiving and the weekend. He had a great time!

Saturday, November 20, 2004 10:47 AM CST

~~~~~~~WE ARE GOING >>>>HOME<<<<<~~~~~~~


Kolton received platelets this morning and is receiving blood and after that's done we are outta here! Dr. Grupp was in this morning and gave us the final instructions. Kolton is getting out a few days early which is great!! He's eating a little bit and is drinking some too. We will be going home still weaning him off the pain medication and he will continue to get his shot once a day until we go to the clinic on Tuesday to check if his counts are high enough to stop.

We will get not quite three weeks at home. We will have to be in on Dec. 10th for his next transplant. We were supposed to go next door to HUP(Hospital of the University of Pennsylvania-where I delivered Caidence)to get his TBI(total body radiation)as part of the transplant. We met with the radiation oncologists( I think that's their title) and they checked out Kolton and we signed a consent, and it ends up we are on a different rotation and will have to take an ambulance twice a day for three days to Jefferson Hospital instead. That really stinks. So, now we have to waste one of our days home coming back down here to go to Jefferson Hospital(somewhere in center city) and meet with those doctors and anesthesia and go through all of that again!! Lovely.

We also have to waste another day because Kolton needs an eye exam before the next transplant. We were supposed to have it done here, but poor planning got us again. We are going to find somewhere near us to hopefully have it done. It's going to be weird and challenging going to these appointments because Kolton will have to wear a mask the entire time.

Oh well, enough about next time....I'm just so tickled pink to be going home. It will be so nice to have all of my family in one place for more than a few hours. I'm going to enjoy every minute!!

Thursday, November 18, 2004 12:36 AM CST

Kolton is still doing well. He was disconnected from the IV pole at around 9:30am this morning and was having a good time playing. He drew on the windows with his markers, played with his matchbox Nascars, and we even went to the playroom. He would play for awhile and then all of a sudden get tired and want held, but I think that is normal though.

He continues to improve daily. He ate some pieces of hot dog and some cheese popcorn yesterday. He wasn't able to keep either down, but it's great that he's trying. He also ate some cheese and pretzels a little bit ago. He hasn't gotten sick, but is taking a nap now. Hopefully he'll hold it down. Although they are more concerned about him drinking and being able to hold that before discharge. Hopefully that will pick up today because he hasn't been very thirsty, but he's also been getting a lot of fluid through his IV.

His IV nutrition is now discontinued and we are continuing to ween his pain medicine. He will get it every four hours today instead of every three hours. I mentioned to the doctors about getting out of here maybe sooner than Monday and they said that they'd see how he does tomorrow. So, I'm not getting my hopes up but hoping to get out sooner. I know those three weeks we're home is going to fly by.

Anxious to go home...... :)

Wednesday, November 17, 2004 4:40 PM CST

Kolton continues his road to home while his counts continue to rise. We discontinued his pain medicine continuously and will give it every three hours(to prevent withdrawl), and started the ween on his IV nutrition. He was disconnected from the IV pole for a few hours today. He was very glad and was running all over the room. It's amazing how quickly he began to feel better after his cells started growing. Even his skin looks a lot better. He still gets sick every once in awhile but that is his body ridding(sp?) itself of the dead tissue in his GI tract and making way for the new cells to grow.

Kolton is passing the time playing with play-doh, watching his new Christmas movies(thank goodness because I was sick of that dinosaur movie), and playing with his matchbox Nascars and the playstation Nascar game.

We are still looking at hopefully getting out of here Monday. :) :) :) :)

Tuesday, November 16, 2004 4:43 PM CST

Hooray~~~~
Kolton's counts are coming up by leaps and bounds daily. His ANC is 860 today, up from 250 yesterday! We were able to stop his medicine by mouth today! That is a huge deal because it tastes awful and he hates it. We went down again today on his pain medicine and will start going down tomorrow on his IV nutrition. We need to go slowly on these both because he can go into withdrawl from the pain medicine if stopped abruptly and his nutrition needs to be weened to give his gut time to start doing its job.

Kolton was playing a lot today. It's wonderful seeing him have some energy. He tires quickly, but that will come with time. We are meeting with a nurse practitioner about discharge tomorrow. There are a lot of rules for when we go home. One thing that's going to be hard is not taking him anywhere with me. He can't go out in public for a few months after the transplant.

Looking forward to Turkey Day at HOME!!!!

Tuesday, November 16, 2004 8:50 AM CST

OK, I know I didn't write in yesterday...but Kolton is doing much better. He had 30 cells! Hopefully we will be able to stop his medication by mouth and mouth care today. You can stop when the counts get to a certain number.

He had a really good day yesterday. He was all over the bed and when able running all over the room. He's not mr. nasty anymore either. It's nice to have my Kolton back.
He got sick once but I was told that they will get sick when everything is healing.

Kolton calling me....will update later.........

Sunday, November 14, 2004 8:26 PM CST

Well, since my entry on friday Kolton has had a rough time. We're not sure what caused it but he has been very out of sorts. He has been nasty to the point that we are wondering if one of the meds was causing it or yesterday we even had a CT scan of his head done because they thought that maybe he had a slow blood leak from the fall out of bed last weekend. The CT was normal and he seems a little better this afternoon and evening.

We went down on his PCA(pain medicine that he gets continuously). We weren't sure if that is what was causing the craziness. But he is handling the decrease so we are going to continue to cycle down his pain meds and his IV nutrition because we are getting ready for discharge. There are some things that need to happen before discharge....

~his ANC(number formaulated from a few things including his white cell count)needs to be at 500 or greater for a few days in a row,
~he needs to be taking fluids and able to hold them(which he already is a little bit),
~he needs to be weened off the IV pain medicine and able to take oral if needed,
~weened off the IV nutrition,
~and able to not need platelets or blood products for at least a few days(longer than a weekend because he will get them in the clinic till next transplant).

All of that leaves us possibly out of here late this week or the beginning of the following I'm told. His ANC is 150 now and he has 10 cells.

We are also doing something else new. Kolton is being confused between the role of Mommy and nurse, so we are trying to switch back to having the nurse do more things like vitals, etc. I will continue to do things that I do at home like dressing changes. He was getting to the point that I had to do everything, and if I wasn't around to do it, it couldn't be done. This is VERY hard for me because it upsets him so much, but I think we were heading in the wrong direction. Not only for his sake, but for my sanity. I was trying to be the comforting/protecting mommy and also the nurse and when the doctors would come in I would have to even pretend to be holding the stethoscope on him. I was being stretched very thin. But I think, with the suggestion of his nurse today and doctor this is something that needs to be done in preparation for the next transplant. He needs me to be mommy and the nurse do the nurse things. I have to put my nursing background in my back pocket for now....(unless there is something being done I don't agree with). This should take a few days to get used to. I think I might leave for a few hours a few days this week when Zak is here, to help him adjust to me not doing everything. It's so hard for me to see him so upset, I had a rough morning.

Grammy, Grandpa, and Uncle Stevie came for the weekend. It was a shame he was in such a foul mood because he didn't get to have as much fun as he normally would have. Everyone was ready to play and he'd be playing and having a great time and then his nasty mood would strike again.
Uncle Stevie changed Kolton's pants a few times by Kolton's request :) Grammy is staying for awhile to help out with Caidence with Aunt Rita.

Well, he's calling me....he should be sleeping. Praying for a quick recovery...

Friday, November 12, 2004 5:35 PM CST

Kolton is doing the same as yesterday. He is more comfortable and is really catching up on his sleep. He took a five hour nap yesterday and has been sleeping now today for almost five hours and is still asleep.

He had four cells this morning, which is great!

We had a good morning playing play-doh. I bought him some new stuff yesterday during my venture out.

Physical therapy has been in bothering him the past two mornings. He wasn't feeling well yesterday morning and they kept trying to get him up to walk around. The one woman acted like he's been in bed for months. She'll never find a more active 3 year old. I was so irritated. I told her to come back when he's disconnected from his IV pole for his shower and she can watch him run around. He's fine!! She asked what time that was and when I told around 6:30pm she said, "oh, we'll be home by then." I thought yeah well we'll still be here, so leave him alone. About 20 minutes after they left he got really sick. I was so irritated that they had to get him all upset while he was feeling so yucky. I could imagine if they'd have gone through even half of what he's had to endure and then have someone come and try to drag their sorry butt out of bed :) Can you tell I was really frustrated with them? :)

Oh well, I guess I'll go get things ready for his shower and linen change for when he wakes up. He should be pretty refreshed. I suppose I'll be up again pretty late tonight.

PS Happy Birthday Aunt Phil!!

Friday, November 12, 2004 5:31 PM CST

Kolton is doing the same as yesterday. He is more comfortable and is really catching up on his sleep. He took a five hour nap yesterday and has been sleeping now today for almost five hours and is still asleep.

He had four cells this morning, which is great!

We had a good morning playing play-doh. I bought him some new stuff yesterday during my venture out.

Physical therapy has been in bothering him the past two mornings. He wasn't feeling well yesterday morning and they kept trying to get him up to walk around. The one woman acted like he's been in bed for months. She'll never find a more active 3 year old. I was so irritated. I told her to come back when he's disconnected from his IV pole for his shower and she can watch him run around. He's fine!! She asked what time that was and when I told around 6:30pm she said, "oh, we'll be home by then." I thought yeah well we'll still be here, so leave him alone. About 20 minutes after they left he got really sick. I was so irritated that they had to get him all upset while he was feeling so yucky. I could imagine if they'd have gone through even half of what he's had to endure and then have someone come and try to drag their sorry butt out of bed :) Can you tell I was really frustrated with them? :)

Oh well, I guess I'll go get things ready for his shower and linen change for when he wakes up. He should be pretty refreshed. I suppose I'll be up again pretty late tonight.

Thursday, November 11, 2004 8:52 PM CST

Kolton is doing a little better today. We went up on his pain medicine last night and it seems to be at a therapeutic dose now.

He had 2 cells show up this morning. They arent' the ones we need, but any growth is positive.

I got out this afternoon for awhile. I went shopping in the gallery. I really needed it!

Well, gotta go he's screaming for me now.

Wednesday, November 10, 2004 9:02 PM CST

Today was much better than yesterday. He is still feeling awful, but I think since we went up on his pain medicine again today, possibly he is receiving better relief. He went to the playroom this afternoon for almost two hours. It was great seeing him playing. He was very bossy and crabby, but he was up and playing so it was nice. He also took a nice long nap this afternoon. I'm very glad, because I feel that he needs the extra rest now more than ever.

Well, better head back in the room. He wants me or zak to lay with him and watch movies all day. At least he wanted to watch Dora's Christmas tonight, we've watched the movie Dinosaur continuously almost the entire stay. It's bad when you know what they are going to say before they say it :)

Tuesday, November 9, 2004 8:15 PM CST

If I thought yesterday was bad, I had no idea. Today was the most dificult so far. His mouth hurts and he's had absolutely enough...he is nasty now. No matter what we do for him it's not how he wanted it and he yells and screams and cries, and it's awful.

His skin is still a mess and it keeps opening in areas and looks terrible. His platelets were low again, but not low enough this morning to need a transfusion until he got the bloody nose late this afternoon. It was difficult to see because he kept wiping it like all little kids do and he had blood all over his hands, arms, face, and throughout the bed. He just looked awful. That combined with his nastiness and just the overwhelming nature of this all had me in tears out in the hallway this evening. This entire nightmare needs to end soon.

Nothing has grown on his blood cultures, so that's great. He was on antibiotics for 48 hours and will stop them tonight. Hopefully that will be the end of fevers and possible infection.

I'm going to bed, I'm exhausted. I'm praying tomorrow is better.

PS-I hope you had a good birthday today, Mom. I love you.

Monday, November 8, 2004 8:12 PM CST

Kolton remains feeling awful. He won't even swallow his saliva the majority of the time, he will drool or spit it out. We started his shots today that he will get everyday to help his counts recover.

Nothing has grown on his cultures yet, so that's good.

Nothing else new. I'm exhausted. The nurse last night had us up a lot. Kolton was awakened at 12:30am to be given tylenol because he had a fever and was going to get a transfusion and can't have a fever during one. I was so frustrated to have to wake him up to give him medicine that hurt his so badly to swallow. After that we were just up a lot.

I want to wish my Mom a Happy Birthday tomorrow!
~~~~~~~~~~~~~~~HAPPY BIRTHDAY!!!~~~~~~~~~~~~~~~~~~~~~

I love you!

Sunday, November 7, 2004 8:58 PM CST

update from earlier.....

Kolton's blood pressure is fine now. He was given some fluids and it's ok now. We're still waiting to find out if he has any bacteria or not. Sometimes when they're counts are low they can get something viral that just comes and goes on its own(which we hope happens for Kolton).

Kolton has a big bump on his head....he fell out of bed this afternoon. He was playing with zak and actually smiling a little bit and he threw himself back on the bed and landed on his head. He does that all the time and actually has hit his head a few times on his headboard at home. His skin is so sensitive that the skin just peeled off where he fell.

There was a toy run today here. It was so touching to see so many people bringing in toys for the kids. It made me so emotional. Santa also came around with bandanas for the kids. I wish Kolton could have left his room because Zak and I went outside with Caidence while Kolton was napping and it was neat to see all of the bikes. I heard there were over 100,000 bikes!! It's unbelievable how generous people are.

Well, gonna go put Kolton to sleep...just wanted to write in because I thought what I posted earlier may seem a little dramatic without any follow up. He's doing ok, we're not heading to the ICU. He's not feeling well, but nothing critical.

Sunday, November 7, 2004 5:00 PM CST

Today was awful. Kolton's mucositis is terrible. He barely spoke but a few words today. All he did was grunt and cry in frustration and pain. We went up on his pain medicine again, and he received platelets and will receive blood shortly. He started to run a fever and is starting on antibiotics now also. Today and the next few days is when most kids get fevers. They drew cultures to see if anything grows and in the meantime start him on broad spectrum antibiotics. The nurse just came out and his blood pressure is dropping some so we're hoping he's not getting septic(bacteria in blood). We may end up in ICU later if he needs meds to keep his pressures up. I'll update later. I'm going in with Kolton now.

Please pray..

Saturday, November 6, 2004 3:41 PM CST

Well, the discomfort for Kolton started. He's in a lot of pain now. He got sick quite a bit last night too.

This morning he woke up and wouldn't talk much or even play. I started hitting his PCA button a lot to give him extra pain medicine because he definately needs it, and I think the docs are going to go up on his constant pain med that he is getting. When I hit his button a bunch of times he feels a little better and will play some. He raced Nana on his Nascar playstation game for awhile. He wants Nana to do everything for him while her and Bubbup are here. She gave him his medicine, but the nurse or I have to do the mouth care. We have to use these foam toothette things to clean out his mouth. We aren't using the prescription mouthwash anymore on them, just water because his mouth is starting to bleed and hurt a lot now.

I can't wait till he starts to feel better :(

Friday, November 5, 2004 4:12 PM CST

Kolton is doing ok today. He has been getting sick on and off all day, but feels better after he does. He was started on a PCA(patient controlled analgesia), which is continuous pain medicine with a button that we can hit whenever we feel he's more uncomfortable or before we give him meds and mouthcare. His mouth is becoming more uncomfortable but there are no actual visible sores yet. He continues to have diarrhea and his bottom is starting to look bad, but we are putting tons of stuff on to help it.

One thing that is concerning to me is his skin. His skin has become very irritated. It started in the diaper area and has spread somewhat. At first we thought diaper rash then we thought that maybe it was from me switching to stronger laundry detergent, then we thought maybe it was because we were using the hospitals diapers which are pampers baby dry instead of the pampers cruisers that we use at home. So, we switched back to his regular diapers, I rewashed all of his clothes, blankets, and pillowcases and am putting extra barrier creams on after I change his diapers. I'm hoping it all helps.
But from the morphine he has become itchy and has scratched himself open in some areas. He was so itchy yesterday in the area of his central line dressing that he scratched it halfway off and tore his skin in the process. When we removed the rest of the bandage to change it, his skin started to open and bleed in some areas. So, hopefully it starts to get better soon.

He continues to play and is in good spirits when he's not getting sick. It's a shame he has to go through this. But I know he's a fighter and is beating this. Please keep him in your prayers for him to be given the strength that he needs to get through this not only physically but emotionally, and that Zak and I be given the strength to be the best support and advocates for him. Thank you.

Thursday, November 4, 2004 4:32 PM CST

Kolton is doing ok. He only got sick once last night and a few times today. His mouth is starting to get sore when we do mouth care and he's getting more and more difficult to get meds in. I think he's just sick of the whole routine. He seemed very down today. So, after his midday meds and bath I broke out some new paints. He was very excited and had a good time. It was very messy, but it was great seeing him have some fun!

Kolton is excited that Nana and Bubbup are coming out to visit tomorrow. I'm also looking forward to my mom's homemade vegetable soup that she's bringing and I think Carol is sending out Sandy's nut rolls. Yummy. We are definately starting to get sick of take-out and Kolton's meals that he doesn't eat :)

Hoping for another uneventful night.

Wednesday, November 3, 2004 5:52 PM CST

Today was a big day, Kolton received his stem cells. They were given at around 6:00pm tonight.

Kolton is doing ok, not good, but also not bad. He was up a few times last night getting sick and got sick quite a bit today. I thought it was still from the cytoxan, but when I spoke with the Dr. tonight I found out that it's the mucositis starting and he will most likely get sick for about the next 10 days or so. He also has very bad diarrhea unfortunately. Although he isn't in any pain yet, so that's good.

Nothing else really going on, we just wait for his cells to engraft and pray the mucositis doesn't get very bad and that he doesn't get any infection.

Tuesday, November 2, 2004 6:33 PM CST

Kolton is doing very well tonight :) He got his cytoxan last night from 8:00pm until 9:00pm, and he woke up at 10:00pm for about an hour getting sick on and off. He then slept the rest of the night till about 6:00am and got sick once. He then slept till about 9:00am. He's been nauseaous(sp?)on and off today, but not bad at all. He even drank a little bit today and had a couple bites of chocolate. They will be starting his IV nutrition tonight though.

Tomorrow evening between 6 and 7 they will be giving him his stem cells. It's very anti-climatic I've heard though. It's just a syringe of his stem cells given through his IV line over about five minutes.

Kolton has a small area in his mouth where a mouth sore may be starting. They should start soon, unfortunately. Although the longer he goes without them the better, because by day 9(tomorrow will be day 1) his cells start to grow and the sores will begin to heal. So, the more time that passes before they come, they won't have time to get bad and they won't be around as long. So, I'm saying lots of prayers that he holds out as long as possible. When they get bad they will hook him up to a PCA, which is continuous pain meds with a button that we can hit for an extra dose when he needs it.

~~~Thanks to everyone who signs the guestbook, I enjoy hearing from everyone~~~

~Tamara-Thank you for sending the window markers, he'll be so excited!!~~

Monday, November 1, 2004 1:36 PM CST

Kolton is doing ok now. Last night and this morning weren't very fun for him. His cytoxan started at midnight and by 2:00am he was getting sick. So, I had everything for nausea and vomiting given to him but not quite so frequently as it was given the last time he had a reaction....well, he had another reaction. It's called a paradoxal(sp?)reaction where there are too many sedation type meds on board and he becomes confused and out of it. Although,it wasn't as bad this time. He kept calling for Zak and to the point that he thought he was seeing him. I called Zak and at around 5:00 this morning and he started his journey down here. Kolton and I were awake from 2:00am to about 7:00am when he finally dozed off.

I was awakened when the resident came in to discuss the fact that he hadn't had any urinary output for the last 4 hours. The beginning of the night was the opposite, I was changing him and the sheets every 1/2 hour or so. So, unfortunately at around 9:30am he was awakened by some IV versed to make him sedated slightly for when a urinary catheter was placed in him. It was awful!!!! He screamed and cried. It's the worst thing in the world to see your child in pain and you can't do a thing about it. Before we came into the hospital I went to Toys R Us and bought a bunch of toys for when he could use a little pick me up.....well, we gave him three toys. It took awhile and a lot of distraction with these presents to calm him down.

He hasn't gotten sick since early this morning but doesn't feel well at all. He won't eat or drink anything either. He will get the cytoxan again tonight at 8:00pm. I suppose we won't give him so many anti-nausea meds tonight so hopefully he'll get some sleep in between getting sick.

Hoping he has a better night tonight.

Sunday, October 31, 2004 4:35 PM CST

Kolton is doing well today. He got sick once, but not too bad. He has no appetite and isn't really drinking anymore either, but is getting hydrated through his IV fluids. When he gets his stem cells on Wednesday they will start his nutrition through his IV.

He will get his first of two days of the cytoxan tonight starting at midnight. It's getting started so late because it has to be started at least 12 hours after his chemo was done today. I'm not looking forward to the next three days. I hope we can control some of it with the anti-nausea meds.

Please keep Kolton in your prayers.


HAPPY HALLOWEEN!

Saturday, October 30, 2004 4:18 PM CDT

Kolton is doing very well today. He is feeling well and has lots of energy. Although, he is already getting sick of taking his antibiotics by mouth. It is becoming a fight already unfortunately. Last evening Kolton got himself so worked up that when he finally did his mouthwash he immediately got sick.

Kolton and I had a great night. His nurse, Cindy, was very quiet and able to do everything she needed to without waking Kolton up. She was even so stealthly that she even changed his diapers without waking him so I was able to get some sleep too. It was very nice. I better catch my zzz's now because tomorrow night is when the nausea and vomiting is expected to start. He will be starting a chemo drug called cytoxan and it's really nasty. We also need to be on top of making sure he's peeing because this drug at this dosage is very toxic to the bladder. If he's not peeing enough they will need to put a foley(urine catheter) in. They usually put them in every kid that's not potty trained, but we are going to try to stay on top of his diapers to avoid it. That was one of the worst things about his surgery to him, so we're going to try to avoid it if possible.

Kolton is enjoying his company today. Uncle Jas, Sara, and Uncle Anthony came in today. They have been playing Tiger Woods on the playstation a lot. Kolton was also thrilled when Aunt Rita and I brought Caidence up to the room. They both were overjoyed to see each other. It was so cute!

Hoping tonight is another great night before it gets bad.

Friday, October 29, 2004 9:35 AM CDT

Kolton did well last night. He isn't feeling 100% today, but not bad enough not to play :) His stomach is bothering him a little bit. He is receiving strong antibiotics three times a day to sterilize his stomach and GI tract of the normal bacteria that lives there. Unfortunately to do this he needs to get diarrhea :( . Kolton has to take these antibiotics three times a day the entire time he's here in addition to a mouthwash similar to listerine(but not quite as strong). This is going to be quite a challenge and somewhat of torture when he gets the mouthsores. Sometimes the nurses have to do it because the parents can't do it to their kids. I'm not looking forward to that at all, as is Kolton I'm sure.

Kolton has been playing with his Nascar matchbox cars a lot and also has fallen in love with these window markers I found. He plays with them continuously. I think only a few left are working. I'll need to get some more.

Not much exciting going on (thankfully)today. Caidence will be coming in this afternoon, but probably not to the room. She had a cold and I want to be 100% sure she's better first. So, I'll go to the atrium and enjoy some time with her when Zak gets here. I'm so anxious to see her.

Please keep Kolton in your prayers as we will really need them soon. Thank you also to everyone who signs the guestbook, I enjoy hearing from everyone.

Thursday, October 28, 2004 5:21 PM CDT

We have started the transplant. We were delayed one day because someone missed the fact that we didn't have a certain scan done in the past 6 weeks. It was nice of them to realize the afternoon before we were to be admitted. But regardless of that....we came in yesterday(Wed)and started hydration in preparation for chemo.

We had our scan this morning that we needed. It was an MIBG. That is the one that shows the active cancer cells. This scan showed even more improvement. If they didn't compare this one from the last one, they never would have been able to see anything. They are calling his scan negative. This is great news! We do realize that there is almost definately still a few active cells here and there that don't register on the scan, but we are going into tranplant in remission.

Kolton started his chemo at around 4:00pm. He isn't expected to get sick till about day 3, so we're enjoying some playtime now(in his room).

Zak and I had a rough day emotionally. We had one of the nurse practitioners come in to go over the "rules" with us. She had no personality and treated us like we were trash and didn't have Kolton's best interest at heart. I spoke with one of the nurses and she said that is just her personality that she expects everyone to break the rules and put the kids at risk. She was downright ignorant. We got into it with her about both parents not being allowed to stay overnight. I asked her what the reason was and she said it was purely physical and that there isn't enough room. Kolton's room has plenty of room. We both stayed last night with absolutely no problem. When Zak said that sucked, she blurted out very caillously that cancer sucks. Really??!! Is it her kid in here fighting for his life? NO!! Don't tell us. The way I feel is that he's our child and there is NO reason that we should not be allowed to be with him 24 hours a day to get him through this. He needs us both and I don't care what they say, if Zak can stay and Kolton isn't well, we are both going to be here for him.

We also found out that Dr. Grupp rotates with 2 other attending transplant doctors. Zak and I trust Dr. Grupp and don't really want a bunch of different doctors. So, we won't see Dr. Grupp again till the last week we're here after this week. I feel like there's too many hands in the pot. For example...they tried to give Kolton a laxative this morning. He goes regularly, so we asked why. The nurse said they always get this. So, we told her we wanted to ask Dr. Grupp first. He said, gosh no he doesn't need it...he's going to get really bad diarrhea from the antibiotics he will be taking each day. Who ordered the laxative??? Once again...too many people placing orders. So, I guess Zak and I need to be on top of everything to be sure he's ok.

I can't wait for Caidence to be feeling better so she can come visit. She has a little cold. I miss my little peanut already. Aunt Rita is watching her. She will be watching her for us till Zak's mom can come back out. My friend Susan came out Monday to watch her in the beginning of our stay because Aunt Rita was sick and so were both our parents. It's an awful time of year, everyone is sick. Speaking of which, Kolton spiked a fever today. We waited awhile before starting his chemo to be sure he didn't get any higher. His temp seems to be going down and he doesn't have any other symptoms.

Hoping we have an uneventful night :)

Friday, October 22, 2004 5:56 AM CDT

Yesterday Kolton had his first dentist appointment. He cried a lot and was very scared, but the dentist, Marsha Gordon, and staff were great with him. She is a pediatric dentist and was really wonderful with him. The entire office was decorated for halloween with lots of decorations hanging from the ceilings, which helped to distract him. He was required to go before transplant to be sure there weren't any possible sources of infection such as cavities or absesses. We will definately be following up with them because they were really great though. They got him in with one weeks notice and didn't have a wait like most offices do. Kolton didn't have any cavities.

Other than that, not too much going on other than tying up loose ends and getting things together to pack. Hoping for a nice weekend :)

Wednesday, October 20, 2004 7:48 PM CDT

Yesterday we were at CHOP all day. We arrived at about 9:00am and didn’t leave till around 7:00pm. Kolton had a hearing test first. He wasn’t very cooperative at first, but came around. It is normal to have some high frequency hearing loss with the chemo he’s received so far, but his hearing is normal!! He then had a CT scan, and did very well without sedation again. Next he had an EKG and an echocardiogram, and sat very well for both of them too.

We then waited for almost 3 hours to see Dr. Grupp. He examined Kolton and then Grammy and Aunt Christine took him home while Zak and I spoke with Dr. Grupp about his transplant. It was a very long talk and not very pleasant. We sort of knew what to expect, but it’s always hard hearing about things that can go wrong. I think I did very well though, I only had tears once.

Kolton will go in this coming Tuesday and will start his chemo on Wednesday. He will receive chemo for six days and then will have one day of rest and then receive his stem cells. The first week he will be very sick from the extremely high doses of chemo, and the second and third weeks he will be in a lot of pain with mouth and throat sores. He will most likely be on a constant pain medication drip with a button that can give him a bolus when the pain gets worse or we need to do mouth care which will be extremely painful. He will be getting all of his nutrition through his IV because he won’t want to eat because of the pain.

He will be in isolation the entire time and strict isolation when his counts drop(weeks 2- about 3 ½). He won’t be allowed a lot of foods if he’s able to eat. We can bring food in for him if it’s prepackaged and once it’s opened it must be thrown away after four hours. I can decorate his room for him, but I can’t cover the walls so the housekeeping can wipe them down everyday and he’s not allowed any flowers or balloons. Everything must be changed everyday. It’s a good thing he has more than one blankey because I can get a new one out each day. He’s also not allowed any stuffed animals unless their washed everyday or kept in a plastic bag.

Unfortunately since he’s going to be in isolation we won’t be able to have visitors and for 4-6 months following his second transplant he will still be on isolation at home. We won’t be able to have visitors and won’t be able to go out in any closed areas such as the mall.

We’ll be packing and getting ready for admission these next few days. We will also be enjoying some family time together. Oh yeah, we also got some really wonderful news yesterday…Caidence is young enough that they figure she still has my immunities and will be allowed in the room during his transplant. We are so….excited. I was really stressing about missing out on some of the best moments with our little princess. I'm so relieved.

Please keep Kolton in your prayers as we enter this intense part of his treatment.

Monday, October 18, 2004 8:46 PM CDT

Kolton continues to do well. You would never know that he had surgery almost two weeks ago. He's running and playing as hard as ever. Kolton has had a lot of fun with all of his company lately. On saturday Aunt Vicki and Uncle Donny came out to visit. Kolton had a lot of fun.

Today Grandma and Aunt Christine came out. They are going to watch Caidence tomorrow while Zak and I take Kolton to CHOP to get all of his tests and meet with Dr. Grupp to discuss the transplant. I'll have to say I'm not looking forward to all the in-depth details of everything that can go wrong during the transplant. Although this talk will be better than the first talk when they gave us all the info about the cancer and the chemo treatments. We now realize that they have to tell you everything that can go wrong, that doesn't mean it's going to happen. I also won't be an emotional mess because I was 9 months pregnant and ready to deliver at any moment.

I'm starting to get things together to take to the hospital. I've never had to pack for such a long time before, especially a hospital stay. It's very strange. I'm starting to get very nervous as it gets closer.

I'm trying to look ahead to after this is all behind us. I bought some books on Disney World because we are going there through make a wish after his treatments are done. I guess we will just take it one day at a time and enjoy our time together here as a family. I hope the weather is nice this coming weekend so we can have a nice family weekend, as it will be the last one together for awhile. Caidence isn't allowed in the room or even the transplant unit. It's going to be very difficult being away from our little princess. Once again, looking forward to a few months from now....

Please keep Kolton in your prayers :)

Thursday, October 14, 2004 8:57 PM CDT

Kolton is doing well. He has been doing better and better everyday. He's running and playing like nothing hurts. He complains of discomfort every once in awhile, or when he does too much, but is easily distracted. He is definately enjoying Nana's company this week.

We received his date of admission for his bone marrow transplant. He is scheduled to go in on October 28th, and they will start the chemo the following day. He will have a major work-up prior to admission. He will need to have all of his major organs checked out. During his surgery stay, he had his kidneys checked out. We will be going in on the 19th to get an EKG, echocardiogram, audiogram(hearing test), and CT scan(to look for any signs of infection). We are also scheduled to sit down with Dr. Grupp(Kolton's oncologist) to discuss everything about the transplant. Kolton also needs to see a dentist to make sure he doesn't have any cavities or absesses.

We received the results from the pathology report from the tissue removed during his surgery. Active neuroblastoma cells were found in the abdominal tumor. Dr. Grupp said he expected it, because he has never had a tumor removed be totally dead. I was disappointed but he told me that Kolton is responding wonderfully to the treatment. We are just continuing to pray.

Sunday, October 10, 2004 9:40 PM CDT

Guess where I am writing from........yes...home!! Kolton was discharged early this afternoon. He is doing very well.

Yesterday we had something happen a little discomforting. I went to get Kolton up to take him to the toy room last evening and when I lifted him up he was lying in what looked like a pool of blood. His central line came disconnected from the cap that was connected to his IV med. I clamped it right away, but it was very scary. It probably looked worse than it was because the IV fluid made it look like more blood. But I hope I never have to see that again. They took some labs to make sure he didn't lose too much blood, he was ok.

We had another good night last night. He woke up at 12:00am in a lot of discomfort, but was getting his pain med at the time, so he felt better quickly and slept till 9:00am.

We took him downstairs in a wagon to McDonalds and ate lunch in the atrium. He got out of the wagon to play with his helicopter from his happy meal and hasn't stopped walking since. He's still having some pain but is doing very well overall.

We are so happy to be home!!!

Saturday, October 9, 2004 12:59 AM CDT

Kolton is doing much better today. Last evening Kolton removed his epidural accidentally. We were very concerned at first, but within an hour or two he was doing much much better than he was with it in place. He's receiving 3 different pain meds through his IV as needed.

Last night was an exceptional night. He was not awakened once till about 6:00am when the surgical resident came in to check him out. This one didn't flip on the light and was very quick and good. It was wonderful seeing Kolton able to relax enough to get some good sleep. He was even rolling slightly onto his side as he would normally.

This morning he had his foley catheter(pee tube) removed and has been disconnected from his fluids. He is now on a regular diet also. He hasn't eaten much, but seems glad that the option is there.

He was out of bed to the couch last evening for awhile and this afternoon he got out of bed and took a few slow steps. We put him in a push-car a little while ago and took him downstairs to the cafeteria for lunch. All he ate was a bite of a Pizza Hut breadstick and some candy. Lunch of champions....but just glad he's getting some calories.

Kolton has been enjoying all of his company the past few days. Both sets of grandparents were here and Aunt Rita was in yesterday. Uncle Stevie came today and Aunt Phil and Aunt TuTu(Susan)are on their way now. He is also anxious for Nana to return on Monday. We are still hoping to get out of here Monday, but wondering if tomorrow might be a possibility. If they switch him to oral pain meds today, I'm unsure what they'll be doing for him that we need to stay. He has me do everything here. I take vitals, change dressings, diapers, bed sheets..pretty much everything. We'll see, hopefully out of here sooner rather than later.

Looking forward to continuous improvement :)

Friday, October 8, 2004 4:39 PM CDT

I was finally able to steal away to update on Kolton....

Kolton is doing well now. The surgery took 3 1/2 hours. Dr. Nance(surgeon) said everything went better than anticipated. He hadn't anticipated anything bad, but when he went in things looked even better than the scans had. Dr. Nance said that he was pleased and surprised at how well Kolton had responded from the treatments. He took some extra nodes that looked suspicious that probably are scar tissue, but we'll wait for the pathology report. It won't change the outcome, but will help with making the decision on whether to radiate the chest area or not. Since both the stomach and chest tumors showed no active cancer cells, whether the removed tumor shows any active cells or not will help to aide in the decision about the chest.

Kolton came out VERY uncomfortable. He luckily didn't have the NG(nose tube) placed, but does have a foley catheter (pee tube). He had an epidural placed for pain relief, but didn't help as much as it should have. The pain team mentioned that it may have been placed a little low for the incision. He has an incision about 5 inches long somewhat diagonal from mid-stomach to the lower left stomach quadrant. He wouldn't move and tried to not allow anyone to move or touch him. At about 10:00pm last night I had the nurse page the pain team to discuss giong up on his medication going into the epidural. They came and almost doubled it, but it didn't help too much. He was ok as long as he didn't move at all, but when he did he winced and almost cried each time.

I thought overnight would be better than usual because we wouldn't be up changing diapers and sheets because of the foley catheter, but since he was so uncomfortable he couldn't get into a deep sleep and was awakened continuously. His overnight nurse and aide weren't very quiet, and a resident came in at 12:15am and wanted to assess him and turned on the bright procedure light above the bed. I was fuming!! After he looked at him I asked him to turn out the light and made sure that when he came in this morning and asked how his night was, I told him that it was awful because he was awakened a million times by everyone! Nudge, nudge. And....his aide spilled his urine on the floor when she emptied his catheter this morning. And, guess how I found out....yep she left it for me step in!! It was lovely.

Kolton is doing better this afternoon. This morning the pain team went down on his epidural meds and added an IV one which seemed to help him better. Before they made the change, he couldn't feel his legs but could feel the abdominal pain. It wasn't quite what we wanted. He is allowing me to move him up in bed now. He is still in a lot of pain when we do it, but it must be somewhat tolerable.

We just gave him his IV pain med and we'll be trying to get him out of bed here soon, possibly I'll hold him sitting in a chair, or if he's up to it maybe we'll put him in a wagon and get him out of the room a bit. I doubt he'll tolerate the wagon, but we may try depending on how well he tolerates being out of bed in the chair.

We may remove the epidural tomorrow, depending on if he's tolerating food and can take pain medication by mouth. He was upgraded to a full liquid diet late this afternoon, and will try food tomorrow.

He had his PICC line removed this afternoon because they placed a new central line in his chest yesterday in the OR. They also did a bone marrow aspirate again. What that is is a stick to each hip in the back and they aspirate out some marrow to test for active cancer cells. It was one of the procedures that needs to be done prior to his bone marrow transplant.

He is quite the trooper and will hopefully continue to progress well. We were told that we may be able to leave Monday.

Tuesday, October 5, 2004 9:45 PM CDT

Kolton's surgery is Thursday morning. We will be going tomorrow morning to see the surgeon and anesthesia, and who knows who else to discuss surgery. Will try to update tomorrow. If not, I'll write in after surgery. Please keep Kolton in your prayers.

Monday, October 4, 2004 8:06 PM CDT

Well, we still don’t know when the darn surgery is. I spoke with Dr. Grupp and he still hadn’t heard from the surgeon, but he said I’d hear from one of them today. I’m going to call first thing tomorrow morning.

I keep getting asked what happens during the bone marrow transplant. So, here’s how it’s explained on the consent we signed….
It will be two treatments with high-dose chemotherapy with stem cell rescue and T cell rescue. High dose chemotherapy with stem cell rescue is used to try to kill any remaining tumor cells. The extremely high doses of chemo destroy bone marrow. Bone marrow is the soft tissue in the hollow of flat bones of the body that produces new blood cells. Blood contains special cells called stem cells, which can restore bone marrow function. Stem cells are the cells that create new blood cells, such as red blood cells(carry oxygen), white blood cells(immune function), and platelets(help blood clot). T cells are special immune cells that help to fight viruses and may help to fight tumor cells. During Kolton’s stem cell harvest, they collected enough stem cells to restore bone marrow function after the extremely high dose chemo. He is also included in a study that will help determine whether T cell rescue may restore immune system function after stem cell transplant.
Stem cells and T cells will be given through his central line just like IV medication.

Some things I learned from talking to the nurses.. mouth sores are very bad and painful from the chemo and most kids won’t eat.. He will also have a lot of nausea and vomiting. One of the chemo meds, thiotepa can cause significant skin toxicity because it is excreted thru the skin, so he will need to be bathed at least 4-6 times daily during the three days of this med.

I still don’t know much other than that. We will be sitting down with Dr Grupp when we are in for his surgery to discuss the transplant. I know that each transplant will be 4 weeks in strict isolation, unless there are any complications such as infection and then the stay will be longer. He will have a 2-3 week break in between the 2 transplants when we can come home. As I know more, I’ll pass it on.

Monday, October 4, 2004 7:52 AM CDT

I'll write in later when I know when surgery is. I added a picture of Caidence I took last night.

Wednesday, September 29, 2004 6:37 PM CDT

Yesterday we went for Kolton’s CT scan in the morning. We decided to try to get him to lie still so we wouldn’t have to give him sedation. It worked!! It took a lot of patience, but it worked. The hard part was getting him to drink the dye. It was put in apple juice, and was about 8 oz. It took almost an hour to get it in him.

We then went up to the clinic and met with Dr. Grupp. We found out that surgery is definitely next week. We’re unsure what day because our surgeon, Dr. Nance, is out of town this week. We were told that he reserved the OR, but we don’t know when. So, we’ll find out Monday. We also were told that from the day of surgery, two weeks later Kolton will start his first bone marrow transplant.

We’re trying to decide what to do this weekend for Kolton’s last hoorah before everything starts.

Sunday, September 26, 2004 8:46 PM CDT

Kolton had a nice weekend. We had a small family birthday party on Saturday. He had a great time blowing out his candles and playing with everyone. Uncle Jason, Sara, Uncle Anthony, Carissa, and Brian stayed overnight. Kolton had a good time playing playstation with his uncles and racing his Hot Wheels with Sara and Carissa.

Kolton seems to be feeling moderately better, but doesn’t seem to be totally recovered since his last chemo cycle. He is still tired a lot, not eating quite as much as usual, and occasionally says that he doesn’t feel good.

We will be going for a CT scan this week sometime for the surgeon to get one last look at the location and size of the tumor before surgery the following week. We will also be getting one last set of labs to be sure his counts are recovered enough to proceed with surgery. During surgery they may also place a new central line and remove his PICC line.

Enjoying every minute with our little angel :)

Wednesday, September 22, 2004 10:18 PM CDT

HAPPY BIRTHDAY TO KOLTON!

It was definately a happy birthday. He was discharged Monday. He didn't spike any more fevers over 101.4 degrees. He's also feeling much better now. He's not enjoying all his medications by mouth here at home, but we're getting them done.

He woke up this morning to 3 dozen balloons all over the house. He was very excited. He had a great day! I'm so glad we were at home to celebrate.

Tuesday, September 21, 2004 6:54 AM CDT

Kolton had a terrible evening on Sunday. During the late afternoon he started to look and act worse and worse. He became more uncomfortable in his mouth, throat, and stomach, and at around 7:00pm he started running a fever. He looked grey and started having the chills. We were very uncomfortable with how he was looking. I also became nervous how I was going to take care of Kolton and Caidence myself yesterday because Kolton wanted me to hold him continuously because he felt so awful. Zak had a lot of work to do and needed to be at work yesterday. So I started calling family and friends and one of my best friends, Susan Brown came out for a few days to help us. I am not only glad to have her here to help, but it's great being able to spend some time with her! She left yesterday morning at 5:00am and was here at about 9:30am.

Kolton spiked fevers on and off all night Sunday. He woke up and wasn't feeling well, but improved in a few hours and was feeling and looking good. Dr. Montleone was in in the morning and said that if he had any more fevers they would send him for a CT scan to look for a fungal infection, mainly yeast because he's been on antibiotics for a while and because his counts are down. And then they would put him on some strong antifungal because it could get into his lungs and other critical places.

It's now Tuesday morning and no more fevers. Hooray! Hopefully we'll be able to get out of here today. Tomorrow is Kolton's 3rd Birthday!!! We've been in the hospital so much that I haven't even been able to buy him a present. So, hopefully I'll be able to go today. If we're at home I also want to fill the house with balloons tonight. I hope Kolton is feeling well when he wakes up and we can finally leave here. I'll update later.

Sunday, September 19, 2004 3:45 PM CDT

Kolton is doing about the same. He spiked another fever last night. It got up to 103.5 degrees. So, we have a new plan...since nothing is growing on the cultures it must be viral, so since he is still spiking fevers they started him on some antiviral meds.

He is still in a lot of pain, so he is still receiving morphine. He was too uncomfortable to eat anything this morning, but I made sure he was medicated prior to going to the cafeteria, and he ate 3 strawberries. So, we are making slow improvement. If he doesn't have any more fevers, we will be able to go home on his new meds tomorrow. I'm hoping, but it's also easier to get his pain medicine in here. It will be very hard to get him to take medicine when he won't even eat yummy stuff yet and I doubt they will let us give him IV morphine at home.

Hoping as his counts come up, he will start feeling better.

Saturday, September 18, 2004 8:36 PM CDT

Last night wasn't too bad for Kolton but I had a rough one. Kolton's IV pump kept beeping for an occlusion everytime he bent his arm, so I needed to keep getting up and have him straighten his arm and reset the pump. The fire alarm went off 3 times for a drill, and between changing Kolton's diapers, sheets and taking his temp it was a long long night. I swore everytime I looked at the clock it was fifteen minutes to a half hour past the last time I was up looking at it.

Since Kolton was still receiving the morphine he was feeling ok when he woke up. He ate a popscicle and wanted some eggs. So, I ordered him breakfast and when it came he was uncomfortable and didn't want to eat.

We had some company later in the morning...Beth and Ryan Woolwine came in to visit. They brought him a basketball hoop that we could hook onto the chair or stroller and he could shoot hoops. He loved it and played it on and off all day long. Their visit was a nice surprise. We don't get to see anyone much anymore since we're always in the hospital.

A little later Carol, Bruce, and Steve came in. Kolton was very excited. He enjoyed having some new playmates. Kolton felt well on and off all day. He is receiving some more pain medicine now and hopefully will have a good night.

Friday, September 17, 2004 7:54 PM CDT

Well, guess where we're at......back in the hospital unfortunately

Kolton hasn't been feeling well since yesterday. I slept with him last night because he kept waking up crying in pain from his stomach and throat. We called the onco clinic first thing this morning and asked if we could bring him in right away. His counts are at zero and he needed a blood transfusion. His throat pain was caused by mucositis(swelling of the mucosa lining which could lead to breakdown in the mouth, throat, or actually could be of the GI tract the whole way to his bottom).He was given morphine through his IV to help manage it. He also spiked a fever while we were there. They think that he may have an infection from the mucositis. It must be a gram positive bug, because he is already on antibiotics for gram negative organisms. Or it could just be viral, in which case we'll be out of here in 48 hours when nothing grows on the blood cultures. Ya know, after the weekend. It's a shame we were in here last weekend while my parents were out visiting and Zak's parents and Steve are coming in tomorrow for the weekend.

We were admitted at about 3:00pm. He has been given another dose of morphine and IVfluids. Since he had the pain medication he finally ate a little something and had a popscicle. He also hadn't gone to the bathroom all day till about 5:30pm, so they're giving him lots of fluids. It should be a fun night of changing diapers and sheets every hour or so. But, hopefully he'll feel better when he wakes up tomorrow morning.

Oh ya, and guess what hospital we're in.....yes, my favorite...Lehigh Valley again. Ugh. I swore I'd never come here again, but it's just too difficult with Caidence going back and forth to the Ronald McDonald house. I'm just hoping we're not in here too long, and most important that Kolton feels and gets better quickly. I'm a little glad we're in though because he can get his pain medication through his line, it would have been difficult trying to give it to him orally at home with as much pain that he's in.

He slept a lot this evening, but he's awake now playing his Nascar Thunder on the playstation. I'm glad he's playing :)

Thursday, September 16, 2004 6:07 PM CDT

Kolton was feeling kind of yucky today. His counts are probably at rock bottom and he feels like it. We are scheduled to go to the clinic tomorrow morning for labs. I can almost guarantee he needs a transfusion. He’s sleepy, very cranky/emotional(easily cries), and just doesn’t seem like himself. We are still doing the IV antibiotics each day and Kolton is getting some stomach aches from them. He woke up from his nap crying from stomach cramps. Hopefully he’ll feel better tomorrow :)

Tuesday, September 14, 2004 3:46 PM CDT

Well, we are finally home. Yesterday felt like the day that just wouldn’t end. Zak dropped Caidence off at about 8:00am and went to work. Kolton was miserable, so it was quite fun taking care of his tantrums and Caidence. Kolton wasn’t allowed anything to eat or drink since the night before because he was going to be sedated for the PICC line placement. Well, it would have been nice if they placed the line early….they didn’t take him till 1:30pm!! It was awful trying to explain to an almost 3 year old that he can’t eat or drink anything. He kept telling me that he was starving and was asking me to order him food, or if we could go to the cafeteria. I was furious they waited so long.

When they came for Kolton, Zak and I went with him. He was scared because when he was sedated the other day he woke up to being stuck a bunch of times for an IV. He wouldn’t get out of the stroller, so they gave him something to help him relax before we took him in the room. The procedure only took 15-20 minutes from the time he was under and I had to leave the room. It’s always so hard leaving.

I’ll never have another procedure done there, I’ll take the time to drive to CHOP. The Dr. doing the procedure never even spoke with us. They also didn’t secure it as well as they did at CHOP when he had a PICC line in the beginning. It only has a little tegaderm (bandage) on it. He’s much too active of a child to assume that’s enough to secure it. I ordered some supplies and we will do it ourselves today when we change the dressing. Overall, I’m very disappointed in the hospital in general. We will do whatever we can to never have to return there.

Kolton was done with his medication at 4:30pm, and we didn’t get out of there till after 6:00pm. The discharge orders weren’t written! All the docs knew we were leaving. We had to wait for a resident or medical student(unsure what he was) to come up and speak with us and write them. He didn’t know anything about Kolton, and there was nothing useful on the discharge instructions. I need to call his Dr to get the info we need. The home care agency had to leave Kolton’s IV antibiotics on our porch in a cooler because we had to wait for this shmuck. The whole day was awful, but on a better note we shouldn’t ever need to go back there. We will have radiation there but it will be outpatient.

Now we wait till his counts recover and then we have surgery on his stomach tumor, then about two weeks later we will start his first bone marrow transplant.
----

Kolton had his IV antibiotics today already. He actually was receiving them while he was playing his friend, Hunter Cole. I love to see him having fun with his friends, and I’m glad his mom is one of my best friends. So, we had a nice afternoon. :)

Sunday, September 12, 2004 6:18 PM CDT

We had an uneventful day today. Kolton had to get a pinchy this morning to get his labs unfortunately. They usually take labs at 4:00am, but I told them they weren't waking him up to stick him. Kolton was disconnected from the IV fluids this morning. He's a free man.

Kolton is scheduled to get his PICC line in tomorrow morning. Hopefully we'll be out of here after that.

Saturday, September 11, 2004 6:49 PM CDT

Kolton had a rough night last night. He spiked another high temperature and got the chills again at about 10:30pm.His temp got up to 105 degrees. The only thing that would bring down his temp is tylenol and after throwing it up the night before he absolutely would not take it. So, his temp went up and down all night. It is down now. At around midnight we decided we should take another culture because all of his cultures were taken from his line and we're hoping that the infection was from the line. So, that meant another stick. It was at least much better because it was a smaller needle and the vein was found right away.

Dr. Montleone was in this morning and said that it's not unusual for his temp to be up still, but it should go down in the next 24 -48 hours. The plan is if his temp stays down, his counts are high enough, and his cultures are negative we will go home after placing the PICC line on Monday. Otherwise, if he becomes neutropenic(low counts), we will be here for the long haul till his counts start coming up(a week or so).

Kolton is feeling well now, except he's not hungry yet. He hasn't eaten much of anything since thursday at lunch. We even just went down to the cafeteria and he made himself quite a large sundae that he didn't eat.

Kolton and Zak are watching the Nascar race while Kolton plays his new Nascar 2005 playstation game. I'm not sure who likes it more, Zak or Kolton. :)

I'd also like to thank everyone that signs the guestbook, it's nice to stay connected to everyone. We couldn't get through all of this without all the support we have.

Friday, September 10, 2004 7:15 PM CDT

Well, we're back in the hospital....

We were discharged yesterday from CHOP and got home around 5:00pm. Kolton was doing well and glad to be home. At about 8:00pm Kolton started running a low grade fever and by 11:00pm it was up to 102.4, so we are at the Lehigh Valley Hospital now. I brought Kolton in and Zak had to stay back with Caidence. His fever topped off last night at 104.7 degrees. He got the chills again too. We tried giving him some tylenol but he immediately threw it up. They also had to put TPA in his line again because they were clotted before they could get labs drawn.

So, we got to sleep at around 2:00am and were awakened bright and early by the docs. This afternoon we got some results back from the cultures they took, and gram negative rods were found. This is one of the organisms that was growing last time he got an infection. They believe that it's still in his line. So, at around 5:00pm they took out his central line and placed a peripheral IV in his arm. It took about 6 sticks till they were able to finally get it in. It took 3 different nurses till it was finally in. It was awful! It's in his right upper arm.

We will be talking to Dr. Montleone tomorrow to discuss what we want to do about a line now till surgery. He recommended putting in another PICC line like he had when he was first diagnosed. We're not sure what we're doing. We will have to be on IV antibiotics for about 10 days I think. So, we will probably going home with them. We'll see what the plan is tomorrow. If they put the PICC line in, they will do it on Monday.

He's still running a fever now. It's at 101 degrees now. It's been anywhere from 99 to 102 degrees today. Hoping he feels better tomorrow. He hasn't eaten anything today and hasn't drank much either.

Kolton is enjoying playing with Nana and Bub-Bup now. Bummer it has to be in the hospital :(

Thursday, September 9, 2004 8:44 AM CDT

Since Kolton wasn't doing so well as I wrote in last night, I wanted to write in this morning real quick because he is doing much better now. He hasn't gotten sick again, and his reaction to the meds has worn off. Although, he's very crabby this morning, but unsure if it's that he's just sick of being here or the medication.

We also want to thank Tamara and Jeff again because the playstation they bought for him has been a lifesaver this morning. We are still in the room without the playstation, so Zak stopped at the house yesterday and picked his up. He's been playing Nascar Thunder all morning!

We also want to thank Aunt Rita for her help yesterday. We definately needed it. Although, it may have been easier on us if we would have let my parents come and take her back to Pittsburgh while we were here, but we just couldn't part with her. My Mom has a neck injury so she would need some extra hands while taking care of our little chubber :)

Well, gotta go...Kolton begging to go to the toy room...

~Happy Birthday Anth!!~

Wednesday, September 8, 2004 8:40 PM CDT

Today was a long and grueling day. Kolton had his chemo running for most of the night, and at 4:30am he woke up vomiting. He kept that up till about 6:15am. After that he would wake up at least once an hour, but usually a lot more to get sick, until about 2:00pm. We had already been giving him a lot of anti-nausea meds, but after he got sick we gave him everything we could. He was fine for about 2 1/2 hours. We took a walk with him and Caidence in a wagon all over the hospital. Kolton couldn't walk because the meds make his gait unsteady.

At about 4:30pm Kolton started with a reaction to all the anti-nausea meds. A lot of them have sedation as a side effect and he had a paradoxal(sp?)reaction. Basically it's like waking up early from sedation like he had for his CT scan 2 weeks ago. He was inconsolable and confused. We finally got him calmed down at around 6:00pm. He's been sleeping ever since. They could have given him something to reverse the meds, but since he was calmed down and only waking occasionally confused, we didn't want to rock the boat and are letting them wear off. We've cut out one of the anti-nausea meds in hopes this doesn't happen again.

They just started his chemo at about 9:30pm. It will run for 6 hours and then he will have IV hydration for 12 hours, after which we can go home. I'm hoping for an uneventful night.

In case I'm unable to write in tomorrow or write in late, I want to wish Anthony a VERY HAPPY BIRTHDAY and hope he has a great day!! I Love ya.

Looking forward to seeing Nana and Bub-Bup this weekend :) I'm sure Kolton can't wait to show you his new sandbox!

Tuesday, September 7, 2004 6:21 PM CDT

Well, we're here at CHOP now. We went to the clinic near our house and had labs done this morning and he just barely made the cut off. His white cell count needed to be 750 and he was 756. So, we went home and loaded up the car and came here.

We had to go to the clinic here first. We were there for about 4 hours or so, waiting, and waiting, and waiting. We arrived to our room at about 5:00pm. Apparently they are very full, so we got an overflow room. It's in the old section of the hospital and we may get a roommate. I am not happy with it at all. There's no shower, no playstation, and the rooms are shaped in a U....so we indirectly already have roommates. I know it doesn't matter how I feel, it's about Kolton and getting his treatment, but I am frustrated.

Zak went to the Ronald McDonald house a little bit ago to get the key to the room for him and Caidence. He will go there tonight and then in the morning he will drop her off here and go to work. Thankfully, Zak's Aunt Rita has offered to take time off of work to come and help us this week while we're here at CHOP. She will be coming tomorrow while Zak is at work. It is greatly appreciated.

Kolton is getting his second chemo med now. It will run for 6 hours and then he has another one after that and that will run for another 6 hours. Hoping for an uneventful night..

Monday, September 6, 2004 5:26 PM CDT

Kolton had a nice weekend playing with Uncle Jason, Sara, and Uncle Anthony. They left early this morning. On Saturday, Anthony and I went to Home Depot and bought wood and everything we needed to build Kolton a large sandbox. Zak, Jason, and Anthony built it in 2 hours. It’s very nice too! Kolton loves it!

We took Kolton to the Allentown Fair this afternoon. He had a good time. He played some games and saw some animals. He was afraid when the cow moooo'd. It was cute!

Yesterday Carol was unfortunate enough to fall while back in Pittsburgh and break her arm. She will be seeing a surgeon tomorrow morning to discuss possible surgery. So, needless to say, she won’t be returning for awhile. Zak and I are unsure what to expect, this will be the first time going at this ourselves.

We go into the clinic tomorrow morning to check counts, and if he’s high enough we will head down to CHOP till Thursday evening. Hoping they’re good and we can stay on schedule.

Saturday, September 4, 2004 9:39 AM CDT

Yesterday we went to get his counts checked to be sure we could get chemo on Tuesday. His ANC needs to be at least 750 and his was 425. So, instead of going to the CHOP clinic in Philly, we are going to the local one first thing Tuesday morning to see if his counts make it or not. If they do, we will go to CHOP and get chemo started; if not, we will try again later in the week.

Kolton has had a lot of fun the past few days. On Thursday, Kolton and I met my friend Tanja and her sons, Hunter and Jagger at McDonalds for lunch and then for an afternoon at the playground. Kolton had a great time!

Yesterday after his clinic appointment we met my friend, Erin and her two kids, Mia and Lucas, at another playground. He hadn’t seen them in a long time, so he had a lot of fun catching up with his friends. Then last evening, Uncle Jason, Sara, and Uncle Anthony came to visit for the weekend.

Uncle Jason has been playing video games with him for awhile. We bought this system at the Lehigh Valley Mall near the entrance, it’s called Power Player. There’s supposedly 12,000 nintendo games on it. Well, it’s a rip off. There’s maybe 50 and they're listed over and over to 12,000, and Jason just figured out that they aren’t the full games either. I suppose that’s why it’s exchange only and no returns. We exchanged it once already because the gun trigger snapped as soon as we opened the package, and this one doesn’t work either. Wonder how many exchanges you can have :) Hahaha

Looking forward to a nice weekend.

Happy Labor Day!

Wednesday, September 1, 2004 3:50 PM CDT

Well, here it is...an update FINALLY :)

Dr. Grupp was very pleased with the scan results from last week. He spoke and reviewed these scans with the surgeon and it was decided that they do not want to operate on the tumor in the chest, and they want to operate on the tumor in the abdomen after his next round of chemo. I’m unsure how I feel about this decision. Part of me thinks that it has to be better to remove as much as we can, but the other part of me is relieved that he won’t have to undergo such a risky surgery. Although, this decision isn’t final because Zak and I are meeting with Dr. Grupp next week while we’re at CHOP for chemo and we want to discuss this further and hear their reasons and thoughts. It’s possible we may get a second opinion from a surgeon we heard of at Memorial Sloan-Kettering Hospital in New York City. We heard that he will do surgery on patients that other surgeons won’t touch. Although, we need to be 100% sure it’s the right decision.

We are scheduled in the clinic on Friday to get labs to be sure his counts are up enough to start chemo next week. So, that’s the tentative schedule.

Saturday, August 28, 2004 5:56 PM CDT

Yesterday we were in the clinic in the morning to get labs. Kolton’s counts have dipped a little bit because we stopped his injections on Wednesday. So, it may take a few days for them to recover on their own.

We also were able to look at his scans that he had done this week. It’s amazing! We won’t know the next plan of treatment till next week sometime. We’re obviously anxious to know what’s coming up.

Today we went to Zak’s company picnic. Kolton had a blast playing. There was a playground there, and he really enjoyed getting to play with other kids. He threw water balloons at Zak and took a few swings at the piñata. He’s now having fun playing with Uncle Stevie. Him and Grandpa came out to visit today.

Thursday, August 26, 2004 6:43 PM CDT

The news we were waiting for came today……….

We arrived this morning at 8:30 and registered and were taken back. Zak and I decided yesterday that we didn’t want to sedate him for this test. He didn’t need to be perfectly still for this one, so we asked if we could just give him something to take the edge off. He probably could have gone with nothing, but we didn’t think that would be fair to him to be taped to a table without a little something, so we gave him some versed by mouth. He did great! He laid very still and watched his construction video we brought. The scan took about 40 minutes. We thought we would be able to see the tumors light up on the screen as it was done, but we couldn’t. So, needless to say we were on the edge of our seats all day till we got the call from Dr. Monteleone.

I received the call while I was in Sam’s club buying formula and diapers. He asked me if I had heard the good news. He said that the only active cancer that showed up was an area on his left hip!! I hadn’t heard such great news in a long time.

He said that we still continue with all of his treatments. About ½ to 2/3 of kids respond this well and it’s definitely a good thing going into transplant with only a small amount of disease. Unfortunately, there’s still a small chance that there could be some active cells in the tumors that are still there that didn’t show up on the scan. We won’t know the plan until our primary oncologist, Dr. Grupp and the surgeon, Dr. Nance talk and look at the scans. Dr. Monteleone did say that we will almost definitely operate on the one in the abdomen because it’s large enough that the chance of there being one active cell is too great. Although he’s unsure what they’ll decide about the chest one. They may only biopsy it to be sure there aren’t active cells, or they may operate. We need to wait to hear still.

We had a huge dinner tonight to celebrate the great news. It’s an amazing feeling to know that he’s doing so well!! So, now we anticipate the future schedule…and continue to pray for continuing improvement, and hope everyone will keep him in their prayers also.

I realized earlier that we were in the hospital everyday this week except Tuesday when we went to Knoebels Amusement Park. Needless to say, we make the most out of every moment out of the hospital. We are scheduled tomorrow morning in the clinic to check his labs again.

Wednesday, August 25, 2004 3:56 PM CDT

We just got home from a long day at CHOP. We arrived this morning at 8:15am and registered. We were taken back and started the process. We were able to convince him to drink the contrast with some apple juice this time, so we didn’t have to put the tube in his nose this time. It was only 8 oz. this time, although we swear the past few times it was a lot more than that. He received 3 sedation meds; versed, pentobarbital, and fentanyl. He had an unusual reaction at first today. He started coughing and his oxygen level dropped. We gave him some oxygen and he was ok, but it was very scary because the cough sounded like his airway was narrowing. He then fought it like crazy and wouldn’t go to sleep. After he fell asleep and we took him to the CT room, he woke up during the scan and they needed to give him more meds. He was then maxed out on the sedation meds. After the scan he woke up again prematurely. He was restless and rolling all over the bed, and crying. Although for some reason drinking his apple juice made him feel better….he drank about 24oz before falling back to sleep. When he woke up again he was much better, he was still drowsy and cranky but at least with it mentally.

They then drew labs because we missed our clinic appt. because of all the sedation problems. Kolton then received his injection of radioactive contrast for the MIBG scan tomorrow.

When we got home I called the clinic up here to see if they had his lab and CT results. His counts are about the same, but if the huge bump in between his eyes that he got last night on the stairway railing gets any bigger we need to go in for a platelet transfusion. If it continues to grow that means there’s still active bleeding. We need to give him one more injection again tonight to help his counts and get labs again on Friday.

CT scan results: The tumor in his neck is GONE!! The one in his chest has shrunk some and the one on his adrenal gland in his abdomen has shrunk 1/3 of its original size. And from these tumors, we will find out from the MIBG tomorrow how much of these tumors is active cancer cells and how much is dead or matured cells. I’m still extremely nervous about tomorrow, but glad to know we are heading in the right direction!

So, from these tests we will find out the plan of action. We were told that they will definitely operate on the one in his abdomen, but we will find out soon what the plan is for the one in his chest.

Continuing to pray for good results tomorrow..

Tuesday, August 24, 2004 9:48 PM CDT

Yesterday we were in the clinic again for labs. His counts are coming up still. He may need platelets in the next few days. I think he does now. He is bruising a lot and has some petecchia( small red spots-I believe it’s broken blood vessels).

We will be heading down to CHOP tomorrow morning. We need to be there at 8:15 for his CT scan. He will be sedated for this test. It’s not very much fun because they give him a little something to chill him out and then they have to give him the contrast through an NG tube(in his nose). Then he gets the med that puts him out the rest of the way. He’s kind of out of it for the rest of the day then.

After that we head over to the clinic there for labs to check his counts. And after that we get the injection for the MIBG scan scheduled for Thursday. He will get this through his line. After these tests we will then know the future plan.

What we’ve been up to………we went out to dinner Saturday night for Uncle Stevie’s birthday and on Sunday, Zak and I took Kolton miniature golfing. He had a blast! Today Carol and I took Kolton and Caidence to Knoebel’s Amusement Park. Kolton loves it there. It takes about an hour and a half to get there, but it’s well worth it!! I took digitals of golfing and today at the park…I’ll download tomorrow hopefully and post some new ones.

Praying for good test results :)

Saturday, August 21, 2004 9:24 AM CDT

Yesterday we were in the clinic to get labs. His counts are unbelievably probably on their way up!! So, hopefully that means we may not end up back in the hospital after this round of chemo. I’m not unpacking yet, but keeping my fingers crossed. Kolton did require a blood transfusion yesterday though.

Kolton is doing well and very excited because Uncle Stevie and Grandpa came last night. Today is Uncle Stevie’s birthday; Kolton was sure to wake him up bright and early to play. Stevie built him a new train track with his Thomas tracks and I’m sure they’ll be breaking out the hot wheels tracks soon.

Enjoying our time at home!!

Tuesday, August 17, 2004 9:56 PM CDT

Yesterday we went to the clinic to get labs. First we had to put more TPA(clot buster) in his line because it was clotted. After that sat in his line for an hour, we drew labs and waited another 20 minutes. His counts are on their way down but not expected to be at the lowest until later in the week. So, we’ll most likely be back in the hospital by the end of the week. Hopefully we’re warding it off though because I’m already packed with most things.

We have some VERY important tests scheduled for next week. We have a CT scan and an MIBG. The CT will show the tumors, but sometimes with Neuroblastoma the tumor cells mature into what they were supposed to be (nerve cells)…so they are not spreading cancer cells but still there. So, the MIBG will tell us more. On Wednesday he will be sedated and scanned, and then a few hours later he will get an injection of some sort of dye that when it is scanned the next day, the cancerous cells will light up. This is so important because it determines the next plan of treatment. Depending on location and size of the tumors, he may need 1 or 2 surgeries, or if the risk outweighs the benefit they may not do surgery at all. His tumors are in his chest, neck, and abdomen, near many vital organs. When I heard this for the first time about no surgery I was absolutely nauseated until I heard that it doesn’t change the outcome at all. Dr Grupp said that radiation can do the same thing. So either way, we are praying that the chemo has shrunk the tumors substantially and hope that everyone will keep Kolton in their prayers also. I think I pray so much that God must think, Oh geez not her again. :)

Kolton had a good day today. Nothing exciting. We’re scheduled to get more labs on Friday in the clinic.

Sunday, August 15, 2004 10:05 PM CDT

Sorry I haven’t updated in a few days…I’m starting to get grief from family, so I figured I better write in :)

Well, let’s see…Kolton got sick about 1-2 times a day till Friday night. He felt fine and would be playing and then all of sudden you could see it in his face that he was going to get sick. We gave him everything we could to help.

Bub-Bub came on Thursday night. Kolton was excited once again for a new playmate. Kolton was down in the garage all morning and afternoon helping my Dad hang things to organize our messy garage. He had his tools there and even wore his safety goggles at times. Very cute!

On Saturday we had a switch of family. My parents left and Carol returned. Carol and I took Kolton and Caidence to the playground in the evening. We then took Kolton for ice cream.

Kolton made dinosaur sugar cookies with Grammy this morning. And in the afternoon I took him and Caidence to a playground that we used to go to all the time. We met my friend Tanja and her boys, Hunter and Jagger. Kolton and Hunter used to play all the time together. It was great seeing him having fun and playing with other kids.

Tomorrow morning we go to the clinic to get labs done to check his counts. Hopefully they’re not too low yet. We’re expecting to be heading back into the hospital this week probably. We always end up back there when his counts drop.

Hoping it’s not tonight we head back. :)

Wednesday, August 11, 2004 9:12 PM CDT

Last night was a good night with no nausea or vomiting. We went in this morning at 10am and he received his last chemo med. He received etoposide today. With this medication he needs his blood pressure taken every 15 minutes. It’s amazing how much better he does with things now, a few weeks ago it would have been a struggle to have his blood pressure taken so much. We're scheduled to have labs taken on Monday.

We were only there till about noon. We came home and he played outside for awhile and then we went to run some errands. Kolton and Caidence both fell asleep in the car so we took turns going into different stores.

Kolton had fun this evening with no nausea or vomiting. We still have the patch behind his ear to help also. He’s still pretty moody, but we’re learning how to handle it better.

Hoping for another uneventful night :)

Tuesday, August 10, 2004 8:31 PM CDT

Last night Kolton unexpectantly got sick. He was fine all evening and at 10:00 right before we were ready to give him his anti-nausea meds, he vomited all over the living room floor. It came fast and was awful. We got him calmed down and brought him up to bed and gave him his anti-nausea meds, which came right back up in about 15 seconds. We were ready this time though with buckets we brought from the hospital. It was a mad dash looking all over for them though. He then went to sleep and was fine till morning.
When he woke up he was fine for a few minutes and then started to dry heave(sp?). We were expecting an awful morning for him but, he was fine after that.

We went in for chemo at 10am. He received the zofran and decadron for nausea first and after his chemo we gave him a dose of phenergan to help with nausea too. The Dr ordered a scopolamine patch for him also. This is the patch people use when they get sea sick. It helped him after another round of chemo before. We also are giving him ativan every 6 hours for nausea by mouth. We are trying to cover him with everything we can to stop the nausea and vomiting.

Kolton fell asleep on the way home, but didn’t stay asleep during the transition to his bed. I spent the next hour trying to get him back to sleep. Finally, I realized it wasn’t going to happen. He is really affected by the decadron they give him for nausea. It’s a steroid and is making his moods swing really bad. There were times this afternoon I didn’t think he was my Kolton. He’s not so moody now, but has lots of energy!

We went for ice cream this evening after his ativan. We’re good so far, and hoping for an uneventful night. Heading back for chemo tomorrow morning at 10am.

Monday, August 9, 2004 6:33 PM CDT

Today Kolton’s counts were high enough to start his chemo. He received anti-nausea meds first and then two chemo meds, Etoposide and Carboplatin. He handled everything well so far. We will be giving him some anti-nausea meds before bed to be sure.

We will have 3 days of chemo this time. Other than that, nothing else is new.

Kolton is heading outside now to play. He continues to have lots of energy!

Sunday, August 8, 2004 5:42 PM CDT

We had a nice weekend with Nana, Uncle Jason, Sara, and Uncle Anthony. Kolton had a lot of fun playing with everyone. Saturday afternoon Kolton went with them to play tennis and catch football and had a great time. We also celebrated Jason’s 21st birthday.

We will be going tomorrow for chemo. Tonight we need to change the dressing on his line. Kolton doesn’t like having it done, but it shouldn’t be too bothersome this week because it’s starting to come off on its own.

Nana will be staying again this week with us. Kolton will be able to show her how he plays Nascar(or asscar as Kolton says) at the hospital on the playstation.

It has been an emotional few days as his looks continue to change. All of his hair is gone now and his eyelashes are almost gone too. I know its temporary, but it doesn't make it any easier.

Wednesday, August 4, 2004 7:01 PM CDT

We went this morning for chemo, but his counts weren’t high enough yet. So, we rescheduled for Monday. They said it might be taking a little longer for his counts to recover because of his infection he’s just getting over. We finish our IV and oral antibiotics today.

Kolton had a great day playing with NaNa. They were outside all afternoon till naptime.

My Mom and I took Kolton and Caidence to get their picture taken at Sadies yesterday. They are so cute. I had their picture taken a few weeks ago at JcPenney and they are awful!! I will never go back there. I got a call 2 weeks after I had the pictures taken at JcPenneys and they told me the one and only picture that looked decent of the two of them together was blurry and couldn’t be printed. I was furious. They called while we were in the hospital the last time. I called the main office and they worked with me and somehow got it a little less blurry. Still very disappointing.

Looking forward to a nice weekend :)

Monday, August 2, 2004 7:11 PM CDT

Yesterday was an emotional day as we had to miss Kolton's benefit. We are so touched by how wonderful it was planned and how many people came to support us. I was on the phone a lot talking to my parents and brothers to find out what was going on. I know Kolton would have had a blast.

Kolton remained well throughout the weekend. We continue IV and oral antibiotics at home. Kolton played hard all weekend. Zak and Kolton went on Saturday and bought Kolton a set of little golf clubs. He looks so cute with the bag over his shoulder. Kolton is actually getting good at baseball too.

We went to the clinic this morning to get chemo. Labs were drawn only to find out that his counts had dipped down below the cutoff to receive chemo. They needed to TPA(clot buster-alteplase(I think)) his line again this morning because the one line wouldn’t draw back blood for labs. It worked great though. So, the plan is to try again on Wednesday.

His antibiotic plan was changed this morning. He will receive his IV vancomycin through tomorrow night, and the IV erythromycin for 3 more days and the cipro by mouth for 2 more days. We’re so glad that tonight will be the last 1:00am hookup.

Uncle Jason, and Uncle Anthony brought Nana out this afternoon. Kolton is very excited! Nana is staying the week and Bub-Bub, Uncle Jason and Sara, and Uncle Anth will be out this weekend. We will be celebrating Jason’s 21st birthday!!

Saturday, July 31, 2004 4:08 PM CDT

We are enjoying our time at home. We continue IV and oral antibiotics here at home. Kolton is doing very well with these. We explained to him that to come home we needed to hook his tubies up to his medicine here. It’s a really neat system we have to use. The medicine is in these bottles that look like baby bottles. The bottles are under pressure and when connected and unclamped it just goes in automatically. We connect him and put the bottle in his pocket and then he can be mobile. He was out playing baseball while getting his antibiotics this afternoon.

We were at the clinic yesterday for labs. His counts are coming up and are already high enough that we were able to schedule chemo for Monday morning as anticipated. Kolton wanted to stay at the clinic to play his Nascar game on the Playstation. We don’t have one at home so it’s something new to do when we need to be in the clinic or hospital. Oh yeah, and Kolton calls it ass-car, because he can’t say the N yet. It’s kind of funny.

There’s nothing else really new or exciting here. My Mom is coming out for the week. I can’t wait for her to see Caidence…she’s changed so much since she saw her last time. She is a very happy baby. She’s full of so many smiles.

Wednesday, July 28, 2004 12:13 AM CDT

We got some good news and bad news this morning. Good: We get to leave here today, finally. We will continue IV antibiotics at home 6 times a day. The Dr. said that we may think we can do it at home, but not many parents can handle it and that we can come back into the hospital if it gets to be too much. Each transfusion is an hour long. We will need to keep a log to keep track of everything. A home care company will be delivering the meds and the pump this evening and showing us how to use it. We will also continue his injections at home to help recover his counts until Friday at least when we go into the clinic and get more labs drawn.

Bad news: The Dr. suggested not traveling this weekend because we may still have problems with his central line and we need it for his antibiotics, so it’s best to stay close by. We were very much looking forward to Justin and Jamie’s wedding on Saturday and being able to attend Kolton’s benefit/carnival on Sunday. So many of our family and friends, and even other caring people that we don’t know personally have put so much time and effort into making this event a success. It’s very upsetting not being able to attend. Ok, maybe I’m getting mushy, but I can’t thank everyone enough…it brings tears to my eyes just thinking of how much support we have at this difficult time.

Well, we’re packed up awaiting his antibiotics to be done at 2:00 to get out of here. Kolton is very excited. I just hope he doesn’t remember that we were supposed to be going to Pittsburgh for the weekend. He was very much looking forward to seeing everyone.

Tuesday, July 27, 2004 6:52 PM CDT

We got the news that Kolton’s labwork from Sunday is negative and if Mondays is negative tomorrow we will be able to leave. We’re keeping our fingers crossed.

Kolton’s 2nd port was clotted this morning. They should have TPA’d both ports yesterday. So they did it the correct way this morning and after reminding them, they got his labs from the second port as we needed. I think the nurses here aren’t used to parents being so involved and are getting irritated. Oh well, it seems we need to stay on top of things. Kolton wants me to do everything for him. I have to take his pressure, temperature, and even hold the stethoscope on him for the nurses and Docs.

They increased the dosage of his vancomycin because it’s still not at a therapeutic level yet. Hopefully they’ll get his antibiotics down as they are hoping. As it is, we will be giving IV antibiotics 5-6 times a day. Most of them are one hour long infusions.

We were able to leave again today for a little bit. It was pouring here though and there was too much traffic to make it to the mall and back on time, so we went to Appleby’s for dinner and stopped and got ice cream on the way back.

He actually wanted to come back to the hospital to play all the new Playstation games he’s got in the past few days. Zak is also enjoying them :)

Monday, July 26, 2004 9:05 PM CDT

The Dr. came in this morning and gave us the good news that we could go home today….and then a few minutes later came in and said that the labs from Saturday just came back positive and we would need to change his antibiotics and would need to stay until Wednesday at least. If the infection doesn’t clear up in 2-3 days they may need to pull his central line, which we absolutely do not want!

Some good news though….we were able to leave for a few hours today in between his antibiotics. We went to Toys r us and bought some new playstation 2 games and some other toys to pass the time. We then went to the playground for a little bit before we needed to return to the hospital. I think they were a little stunned I asked if we could leave for a little bit, but they couldn’t see why we couldn’t. It was nice.

When we returned they needed to get some labs only to find out that his line had clotted. They wanted to stick him to get the labs, but I asked to try one last time with possibly a larger syringe to flush it as the nurse in the apheresis lab did when we harversted stem cells. Thank goodness it worked enough that they could get the labs they needed and then did a procedure called TPA. I forget what it stands for, but basically what it does is break up the clot. They inject this stuff into his line and it stays for an hour and then they pull it back out. This procedure also worked, so were good as long as these new antibiotics work.

Kolton played a Nascar racing game on the Playstation for about 2 ½ hours this evening. We finally had to make him shut it off. It seems we have a video game junkie on our hands. I guess that will happen though being stuck in the hospital so much.

Praying for antibiotics to work :)

Sunday, July 25, 2004 6:30 PM CDT

Today was pretty uneventful. His counts are starting to come up, so we may be out of here tomorrow. We will be giving him IV antibiotics at home 5-6 times a day, but we’ll do anything to get him out of the hospital and a chance to be a normal little boy.

We took a walk around the hospital today. He made his own sundae in the cafeteria, and got a slushie himself on the peds floor. He fell asleep for his nap at almost 6 tonight. We were just not going to give him one today because it was getting late but he fell asleep watching the Nascar race with Zak. It’s almost 8 now and he’s still asleep, hopefully he’ll stay asleep now at this point....otherwise I should expect a late night. :)

Saturday, July 24, 2004 3:37 PM CDT

Kolton continues to do well. He didn’t wake up till almost 11:00 this morning! Although he was awake quite a few times last night, between needing his diaper changed and the nurse coming in to do his labs at 6:00 for ½ hour. She came in unprepared opening syringes and filling them, turning on the lights, and getting everything ready in the room and just being noisy. Usually the nurses come in with everything ready and it’s much smoother. So, he got all worked up and upset being woke up and messed with. Hopefully she’s not back tonight :)

Uncle Stevie is here and Kolton has been enjoying his company. They played matchbox cars, Nemo playstation, SpongeBob video game, pretend baseball, and dinosaurs. It’s pretty cute when he plays baseball…he likes to be the batter and after he hits the pretend ball everyone needs to clap or he yells at us.

Kolton’s Onco Doc, Dr. Phil, said this morning that there’s a chance we may be able to go home next week and give him his IV antibiotics at home. I didn’t realize but he will need to stay on them for 10 days after the first negative ure. Well, we’re still positive so I guess we will have to do the antibiotics at home if we want to go home when his counts start to come up. Hopefully when they get more results back from the ures and sensitivities they will be able to narrow down his antibiotics to only 2 or 3, because as it is now he gets them around the clock every few hours. He will also still be on them when we start his next round of chemo on the 2nd.

Friday, July 23, 2004 8:54 PM CDT

Today has been a pretty uneventful day. We remain in the hospital for IV antibiotics. We got preliminary results back from his ures they took prior to starting antibiotics and they are positive for 3 types of bacteria. They are all things that we all have in our bodies, but with his immune system depressed his body can’t keep them in check. We drew more ures this morning hoping to see improvement from the antibiotics. We won’t have results till at least tomorrow. But things look good because he hasn’t had a fever today at all.

Kolton is anxious to see Uncle Stevie who’s on his way out now. He’ll enjoy having someone new to play with, he’s getting sick of us I think..haha :)

Something kind of funny: Kolton used to say Grandma as Damma…and now he calls her Grammy, but it comes out sounding like he’s calling her Jeremy. It’s pretty funny :)

Thursday, July 22, 2004 8:06 PM CDT

Yesterday was a pretty uneventful day until around 10:00 pm when Kolton came up on the couch and complained that he didn’t feel well. I covered him up and he snuggled in as he started with the chills and a fever. We called CHOP and spoke with the fellow from oncology, and he told us to bring him in. So, at around 11:00 we arrived at Lehigh Valley Hospital and was instructed to go directly to the peds unit.

He was fine for an hour or so with no fever, chills, and felt relatively good. But when he laid down to go to sleep he started with the chills really bad. We had never seen anyone with chills this badly. It looked like he was having seizures. It was very scary. His fever got up to 105 degrees before the Tylenol took effect.

It was a long night. His antibiotics didn’t come up from pharmacy till about 2:00 and they needed to take his vitals every 15 minutes to be sure he didn’t have a reaction to the meds. His fever broke after the antibiotics were in.

He woke up this morning doing well. He started to get another fever this afternoon but we gave him Tylenol right away. He painted this morning and they brought in a playstation for him to play. He played a Bear in the Big Blue House game and on Zak’s lunch break he bought the Nemo game that Kolton loved in the clinic the other day. Kolton’s SpongeBob game also hooked up to the tv.

He’s getting very restless and sick of being in the hospital stuck to an IV pole it seems. Hopefully we won’t be in here too long, although the Onco Doc thinks we’ll be here at least throughout the weekend, unfortunately.

Tuesday, July 20, 2004 5:55 PM CDT

Today we had an appointment in the clinic. It's at a branch of the Lehigh Valley Hospital about 10 minutes from our home. Kolton had his labs drawn and the results revealed that he would need another blood transfusion. We left for about 2 hours while the blood was ordered and delivered. He did not want to go back at all, but I reminded him that we left some of his Thomas trains there and that he could get another slushie. They have a slushie machine in the clinic for the kids(thank goodness). It also took some convincing to get him to let us hook him up, but they had a SpongeBob playstation game that intrigued him enough to distract him.

We have another appointment on friday for more labs.

He's outside now playing and having fun. Heading out there myself. :)

Sunday, July 18, 2004 6:29 PM CDT

Kolton continues to do well and has lots of energy. It's wonderful! We went to Cabelas today. Kolton loves the aquarium there. Had a great day.

This morning we changed the dressing on his central line in his chest. It had been a week today. We're very glad that we were able to go the full week. After the line was placed we had to change the dressing everyday because of bleeding. Kolton was not very happy because it was very irritating to the skin changing it everyday.

We are starting injections tonight to help his immune system to recover more quickly. We'll continue until his counts are on the up-swing. Hopefully it won't take long.

Enjoying being home :)

Saturday, July 17, 2004 1:50 PM CDT

We're having a great day.....getting ready to go home!

Yesterday was the same as the days before. He got his chemo in the morning and got IV hydration the rest of the day. He's had a lot of energy the past few days...and I found out why...he's been getting a steroid that in the dose he's getting helps for nausea. Last evening he was bouncing off the walls it seemed. But he hasn't had any nausea or vomiting so we're very thankful!

Although, for the past 2 days Caidence has been cranky and last evening she was inconsolable and wasn't taking her bottle. She was acting the same way she did when she had her ear infection a few weeks ago. So, after Kolton went to sleep at about 10:00 Carol and I took her downstairs to the ER. They checked her out and found nothing. Her right ear had some fluid but could be residual from last ear infection. So, we got back up to Kolton's room at about 11:30 and gave her some tylenol and she finally took her bottle. At around 12:00 Zak and Carol took Caidence back to the Ronald McDonald house for the night.

Today, Kolton is very anxious to go home!! He was very excited to see Grandpa(Champa)this morning and loved the toys that were sent by Nana. We're scheduled to be able to leave after his Mesna(drug to protect his bladder from chemo meds)at 6:45.

We're scheduled to have labs drawn in the clinic on Tuesday.

Hope to add some photos while we're at home this week. We appreciate everyone's support and love the messages in the guestbook.

Looking forward to going home!!

Friday, July 16, 2004 9:31 AM CDT

Kolton continues to do well! Yesterday was a good day. We were all over the hospital again. He plays and has fun like he's not even in the hospital. It's wonderful!

He took a very long nap yesterday so he didn't sleep as well last night. His nurse also wasn't as great as the previous nights. Her attitude and sense of humor were as Zak described, as dry as a piece of cardboard. Looking forward to having our regular nurse back tonight. All of the other nurses have been great though.

Carol had a long night with Caidence last night as she didn't go to sleep till 3:30! Little stinker!

Scheduled to be out of here saturday, with the next round of chemo tenatively scheduled as outpatient on August 3rd. Although, even though it is outpatient it usually drops the counts down lower and longer. So, if/when he spikes his fever after that round we will be in the hospital longer because it will take longer for his counts to come up. Bummer.

Looking forward to another smooth day :)

Thursday, July 15, 2004 6:53 AM CDT

Kolton had a good day yesterday. He finished his chemo by 11:00am and although he was connected to the IV pole for hydration we were everywhere. We were in the toy room(a lot), down to the McDonalds in the hospital, the gift shop, and in the evening zak and I took him for a slushie from the Day Surgery holding area. He had a lot of energy during the day and we needed to keep a close eye on him because he would want to go faster than the IV pole was able to.

He had another good night last night. No nausea or vomiting, just a lot of diaper and bed sheet changes due to the IV fluids.

Zak, Carol, and Caidence went to the Ronald McDonald house at arouind 10:00 last night. Last night was the first night zak stayed there. Both of us want to stay with Kolton, and I had been leaving to be with Caidence. So, we'll see this morning what he thought of it. It's very nice there, but for me I hate it. It's very hard for me to leave Kolton.

The plan this morning is to start his chemo between 8:30 and 9:00, depending on when he wakes up. We'd start sooner, but one of the side effects of the first drug is that it can lower your blood pressures so they take his blood pressure every 15 minutes. He hates it.

Wednesday, July 14, 2004 9:20 AM CDT

Kolton had a good night. He didn't get sick at all, we were just continuously changing diapers and bed sheets becasue he is VERY hydrated now. He is currently getting his second chemo med now while we are in the toy room playing video games.

This morning Zoey and Rosita from Sesame Place came to visit. Kolton was VERY excited and had his picture taken with them. I also took some digitals that we hope to add to the web page soon. They gave him a few toys and a card that entitles him to come early and stay late and meet the characters at Sesame Place. Sesame Place is somewhere near Philly. Some of the characters from Sesame Place come here once a month; we met Elmo and Cookie Monster last month.

Tuesday, July 13, 2004 3:35 PM CDT

Last week the stem cell collection went well. It took 3 days and Kolton handled it well.

Kolton had a great weekend as all of his uncles were out to visit. Jason, Anthony, and Steve were playing hot wheels, SpongeBob video games, and saturday night they set off fireworks with Kolton. Kolton also wanted all of the uncles to have a hand in changing his diapers....much to their dismay. :)

Well, here we are back at CHOP. We got here today at about 11:30 and went to the clinic. He had his vitals and labs taken, then was connected to IV fluids in preparation for chemo later.

We got to his room at about 2:00. It's the best room yet....there's a construction site and train tracks that can be seen from his window. Kolton is VERY excited! Kolton is anxious to go to the "toy room". There's a video game there that he loves. So, after his nap we will be heading there for sure.

He's napping now while we wait for his chemo to come up from pharmacy. He will be getting 2 chemo drugs today, Etoposide and Ifosfamide. He will also get Mesna which is given to protect the bladder by speeding up the excretion of the meds.

It's now 5:15 and his chemo has arrived and will be started shortly.

Wednesday, July 7, 2004 10:28 AM CDT

We are currently at CHOP doing the stem cell harvest. Yesterday was our first day of collection. For this procedure he is connected to an apheresis machine through his central line that was placed last Monday in surgery. He will receive all of his treatments through this line also. The apheresis machine is similar to a dialysis machine, but it removes parts of the blood. Last week we collected T cells through the same procedure.

He is doing well now. Kolton and Daddy slept through most of the procedure. We will find out this evening if they collected enough stem cells or if we need to come back again tomorrow.

After the collection is over, we will need to wait 48 hours before starting our 3rd round of chemo. So, we may start friday or monday. Our next chemo treatment will be done at CHOP and will be a 5 day cycle.

Wednesday, July 7, 2004 10:28 AM CDT

We are currently at CHOP doing the stem cell harvest. Yesterday was our first day of collection. For this procedure he is connected to an apheresis machine through his central line that was placed last Monday in surgery. He will receive all of his treatments through this line also. The apheresis machine is similar to a dialysis machine, but it removes parts of the blood. Last week we collected T cells through the same procedure.

He is doing well now. Kolton and Daddy slept through most of the procedure. We will find out this evening if they collected enough stem cells or if we need to come back again tomorrow.

After the collection is over, we will need to wait 48 hours before starting our 3rd round of chemo. So, we may start friday or monday.

Wednesday, July 7, 2004 10:23 AM CDT

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