Friday, January 26, 2007 9:10 PM CST

DAY 1,986

I can't believe it's been 3 weeks since I last posted! It seems like just yesterday.

Time flys when your having fun! We have just been busy with the usual day to day stuff!

Bailey has scans coming on 2/6-2/7 - please keep him in your prayers for another clean round! This will be his one-year post treatment scans! We have NEVER made it this far off of treatment!

Bailey had a homework assignment the other day that asked some personal questions about feelings. He gave some pretty interesting answers, but one of Cameron's just blew me away. I can't believe how big of a heart he has ~ even at 6 years old!

The question from Bailey was: What is something you worry about?

Cameron's answer: Every time you have to go for scans and see Dr. Matthay I worry about you!

How many 6 year olds would understand the gravity of those visits? I could tell by the way Cameron answered that it truly is something that bothers him! What a cool brother!

What an even cooler son! I'm so proud!

Kelly

Friday, January 5, 2007 6:02 PM CST

DAY +1,965

Here is a picture of the kids sledding off the back deck into the meadow! They LOVE living the snow!

They have 2 games this weekend - should be fun with their new sticks!

Kelly

Sunday, December 31, 2006 11:37 PM CST

DAY +1,960

Cameron had an absolute blast skiing yesterday! There were between 50 and 60 kids and Cameron was one of 4 who got to go on the chairlift and actually ski a real run - 3 times!

We are getting ready to bring in 2007 with lots of love, health and happiness!

Hope everyone else does too!

Kelly

Friday, December 29, 2006 10:06 AM CST

DAY 1,958

We had a WONDERFUL Christmas full of good times and lots of family! We started out being in the Bay Area for Christmas with Ronnie's family. Then, the day after Christmas, we all headed to the Shark Tank for a game against the Ducks. The Sharks lost by one, but we still had a great time!

Then we had to hurry up and rush back home for Cameron's 6th birthday on the 27th! (I can't believe my baby is 6!) We had a big birthday party at Nonny and Papa's for Cameron and then slept over and woke up yesterday morning and had Christmas with Nonny, Papa, Uncle Corey and cousin Lexi from Texas! We got to have another AWESOME dinner with turkey and all the fixings!

We are all now on system overload and need a few days rest! Bailey had way too much stimulation and ended up getting sick last night! He's fine now and we are looking forward to a nice, quiet New Years!

Cameron gets to take his first ski lesson tomorrow as a gift from Uncle Corey and Cousin Lexi! He is SOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO excited! I'm sure I will have some new pictures to post!

The picture on the home page is a house we went to while in the Bay Area. This house was beyond AMAZING! This guy does this every year and collects donations for Oakland Children's Hospital! Last year he collected over $15,000! His electrical bill had to be at least that much!

Hope everyone had a happy, healthy holiday! It was 7 years ago today that we were heading down to UCSF to start our nightmare and 3 years ago that we were in New York waiting to meet with a surgeon for another nightmare! As you can see from the pictures, Bailey couldn't be happier or healthier!

WE ARE SO BLESSED!

Kelly

Sunday, December 10, 2006 12:11 AM CST

DAY +1,939

Bailey woke me up at 1:30 this morning to tell me it was snowing! He wanted to go out and play, but I told him he would have to wait until morning! They LOVE being where it snows more often!

They have already gone out and shoveled all the walking paths and then played for a while. Then, of course, it was time for a break and for some hot cocoa, marshmallows and whip cream!

Their stuff is in the dryer getting ready for round 2! It's snowing pretty hard again, so I'm sure they will be back at it later today!

They have one more week of school and then their Christmas break starts! They are anxiously counting down the days until Santa comes!

Just wanted to share some pictures of them in the snow!

Kelly

Monday, November 27, 2006 7:43 PM CST

DAY +1,926

I got the following note from Bailey's substitute teacher that he had for the week before Thanksgiving:

"Parents of Bailey,

I have been Mrs. Horn's substitute teacher this past week. I have thoroughly enjoyed her class, especially your son. He has been such a (double underline) delight. He stays on task, is extremely well mannered, takes it upon himself to help others, and has kept me informed about class procedures. He (underline) truely brightens my day.

Just thought you might like to know this.

Mrs. Leuder"

I thought that was a pretty neat note to get sent home and just thought I would share!

Kelly

Friday, November 24, 2006 1:03 AM CST

DAY +1,923

VMA - 6!

Scans - CLEAR!

Blood Tests - AWESOME!!!!!

Our Thanksgiving was made yesterday afternoon when Dr. Matthay walked in with a big smile on her face! She yet again is beyond pleased with how well Bailey is doing and how well his scans, blood work, etc., etc., etc. look!

We will return again in February for another round of scans and a lot of other follow up stuff and at that time talk about extending the time in between scans from 3 months to 4 or possibly 6 months! In January, it will be 3 years since Bailey's last surgery to remove the latest tumor! Two of those years he was on Accutane! He now has been off the Accutane for 9 months and looks and feels better than ever!

Bailey's Nonny made and donated 11 quilts to bone marrow transplant patients at UCSF this trip and we're glad to see that one patient has already received one! We wish there weren't any bmt patients right now (or ever) but know that since there will be, at least we can give them some hope and something to hold on to during their difficult times!

Thank you for the continued prayers! They continue to keep our precious angel happy and healthy!

Love,

Kelly

Friday, November 3, 2006 4:25 PM CST

DAY +1,903

I have included a picture of Bailey's school picture because we do not have a scanner right now! The quality isn't the best, but it is a good picture of our second grader!

I have also included a picture of Cameron's school picture on the photo page! He is such a cheezer! He wanted to make sure that we would be able to see his missing tooth!

He has since lost another and truly looks like a hockey player!

Cameron is going to be playing goalie tomorrow in their hockey game and is VERY excited! He hasn't been able to be goalie for a LONG time since he was playing with kids over twice his age and over double his size! They shoot way to hard for him! Now they are playing with kids their own age and size, so he is excited!

Bailey came down with a stomach bug and missed school yesterday. He seems to be better today!

It's raining and gloomy here today! The kids are wishing for SNOW!

We are still hoping to get our house sold soon as we would like to be in our own place with our own stuff! Time will tell I guess!

Kelly

Tuesday, October 31, 2006 6:40 PM CST

DAY +1,900

HAPPY HALLOWEEN!!!!!

Tuesday, October 24, 2006 7:13 PM CDT

DAY +1,893

We have been without the internet for a few days and I realized how dependent we are on the internet not having it!

Bailey was going STIR CRAZY not being able to check all of his hockey stats, scores, etc., etc., etc.

The boys are both doing great in school! Cameron lost his first tooth last Friday night at pizza! We were afraid he was going to do the same thing Bailey did and eat it with his pizza! He didn't and was soooooooooooooooo excited that the tooth fairy came for him!

He is sooooooooo dear, he got $2 from the tooth fairy and the first thing he said is that he could share one with Bailey! He has always been so thoughtful that way and has a HUGE heart!

We are getting ready for Bailey's next round of scans, which will be the week of Thanksgiving so the kids won't miss too much school!

Cameron had to miss 3 days last week with an ear infection which turned into a ruptured ear drum! That wasn't any fun, but he is better now! Bailey and I started the bug with strep throat and Ronnie ended up with some form of the bug.

We are all feeling better now and the boys are really looking forward to Halloween! Bailey is going to be a police officer and Cameron the green power ranger (he has never watched the show before, but whatever)!

I will try to put new pictures up now that we have a better computer up and running!

Kelly

Wednesday, October 4, 2006 11:03 PM CDT

Day +1,873

We got some pretty good news today! We did Bailey's follow-up labs yesterday to check all kinds of liver function stuff, along with some other stuff to see if we could figure out why his albumin was low.

Well, it was smack dab in the middle of normal!!!!!! All of the other counts we checked were great as well! I'm thinking that Dr. Matthay will say we have nothing at this point to worry about and, as always, we will keep an eye on things!

The boys both started back at hockey tonight! They did great and had a great time! They are just going to be playing on the in-house team which I think they will be happy with! Unfortunately the coach the the mite tournament team decided he didn't want Bailey on the team and didn't even have the common courtesy to let us know he changed his mind after the roster was posted with Bailey's name on it! I guess we should have known to expect this from him as his only priority is his son - NO ONE ELSE!

What goes around comes around and he is the one that has to live with himself - not me thank God! We are happy that things have worked out the way they have. The boys will be playing together and having fun and that is what's important.

Also, today after I found out Bailey's lab results were as good as they were, I realized I don't have time in my life for someone like this to upset me as I have the best gift in the world ~ and that is the health of my boys!

I am just being a typical mother trying to protect her young and when your kid finds out he is no longer on the team from another kid - THAT IS WRONG! My feelings on that will never change and I don't think they should as the way things were handled is totally unjustified.

So now we will move on to scheduling our next round of scans for next month and work on trying to get our house sold so we can move into our own home with our own stuff! I miss our stuff! I miss my bed! But we are very thankful we have the situation we do and we are allowed to have our kids in the school we want and be living in the area we want. It all takes time, I'm just not a patient person!

So for now we rejoice in Bailey's continued good health and all that goes with that! My family!

Love,

Kelly

Friday, September 15, 2006 4:04 PM CDT

DAY +1,854

The boys have finished another week of school and still love it! Cameron's teacher has mentioned how helpful and thoughtful Cameron is and Bailey's teaching seems to be willing to work with his situations!

The boys will both start hockey in the beginning of October. There were not enough other mite teams in the league to justify having a Norcal travel team, so both boys will be doing the Tahoe Bears again and have some chances at tournament play.

It will be nice that both boys will be in the same programs so we are able to get all our hockey done at the same time!

I just saw our first snow flakes of the season! We went from the mid 80's earlier in the week to snowing today! It is a weird change, but kind of neat! The boys both heard it is supposed to snow tomorrow and they are both excited! I think they are thinking there will be enought to go out and play in! Realistically I don't think so, but you NEVER know in Tahoe! Like everyone always says ~ If you don't like the weather in Tahoe, just wait 5 minutes!

We will be taking Bailey in for his follow-up lab work next week once I can figure out a lab that is willing to work with the way WE want things done! I know from my experiences in the past that this is not always the easiest of tasks, but I will figure it out and get that behind us! We are hoping to see some improvement in his liver lab functions so that we don't have to pursue anything further at this time!

He is feeling and looking so great, it would be a shame to have to go through more medical "stuff" right now!

We are looking forward to going to a golf tournament fundraiser for childhood cancer research on Monday and then next weekend is the kids' favorite BIG DIG through the American Cancer Society. That is where they will get to drive all the big construction equipment for a day! I don't know who has more fun at that, Bailey and Cameron or Nonny, Papa and I watching them!

I will post pictures from the Big Dig after the event! The boys both look a little different as they both decided to chop off their beautiful blonde hair!

Until then.....

Kelly

Tuesday, September 5, 2006 6:20 PM CDT

DAY + 1,844

Today was the kids' first day of school! They had a great time and saw some of their hockey buddies! Bailey's second grade teacher seems very nice and was aware of his situation. She stayed in with him at recess to work on the FM system and all seemed to go well. He ended up with a headache at the end of the day, but I think it will just take some time getting back into the swing of things and all of the noise!

Cameron LOVED his first day of kindergarten! His teacher is VERY nice and going all day was not a problem at all!

We are enjoying being in Tahoe in the fresh clean air and are hoping something happens with our house soon so we can move into our own place!

Kelly

Tuesday, September 5, 2006 6:20 PM CDT

DAY + 1,844

Today was the kids' first day of school! They had a great time and saw some of their hockey buddies! Bailey's second grade teacher seems very nice and was aware of his situation. She stayed in with him at recess to work on the FM system and all seemed to go well. He ended up with a headache at the end of the day, but I think it will just take some time getting back into the swing of things and all of the noise!

Cameron LOVED his first day of kindergarten! His teacher is VERY nice and going all day was not a problem at all!

We are enjoying being in Tahoe in the fresh clean air and are hoping something happens with our house soon so we can move into our own place!

Kelly

Sunday, August 20, 2006 12:48 AM CDT

DAY +1,828

We got another 90 day renewable warranty from Dr. Matthay!!!!! Bailey's scans were unchanged ~ still CLEAN!

His VMA was 6 and all of his bloodwork was great except for one of his liver functions that has now dropped below normal and upon looking back at previous lab results has slowly, but steadily declined every time.

We will be following up in a month with some other lab tests to see if we can determine what is going on and then we may have to follow up with a urologist.

An a happier note....Thursday, August 17, 2006 was Bailey's 5th BMT birthday! Five years ago right now he was a VERY sick, VERY unhappy little boy! He was receiving multiple platelet transfusions a day, red blood, albumin, etc., etc., etc.

It was so nice to see that now he was racing from one roller coaster to the next at the Santa Cruz Beach Boardwalk! I have a picture of him and his cousin I want to post, but our scanner isn't connected to the computer, so I promise to add it later! He had an absolute blast with his cousins at the Boardwalk. Then they went home and we took the boys to an AWESOME seafood dinner out on the pier! The boys had pasta with prawns, scallops and lobster after having steamed clams for an appetizer!

It was really fun sitting right on the ocean on the pier watching him be so happy and look so healthy after remembering where we were 5 years ago! He has come a LONG way!

Anyway, we are getting ready to get back in gear for school soon! Just going to enjoy the last few weeks of summer and hope that whatever is going on with his liver is minimal!

Kelly

Sunday, August 6, 2006 8:38 PM CDT

DAY +1,814

Things continue to be CRAZY but good this summer! Ronnie returned after 6 days of fighting fires in intense heat! He was in Fresno where it was 114 every day! People were dropping like flies and he was out fighting fires! He made it home safe ~ that's what's important!

We got the house on the market and are now just waiting for the offers to come rolling in! No one has looked yet, so I think we have some time to wait!

The boys start another hockey camp tomorrow! It will be good to get them back with all of their hockey buddies and keep them busy!

The following week Bailey has another round of scans! Please keep praying that all is well! This will be 6 months since he stopped his accutane.

Kelly

Monday, July 24, 2006 6:02 PM CDT

DAY +1,801

Sorry it has been SOOOOOOOOOO long since the last update! We have been busy and a lot has been going on!

The boys have had a busy summer swimming, playing with their cousins, camping, hockey camp, etc., etc.

We are also in the process of getting our house ready to be listed for sale. We have decided to move back to the lake since we are up there 4-5 times a week for hockey! We only live 40 minutes away, but it is adding up!

Ronnie just got sent off today on a strike team for some fires in Fresno, CA and will be gone for 13 days! Please pray that all of the firefighters make it home safe! I HATE this part of his job! He has always dodged having to go on wildland fires up until now!

I found the poem below and wanted to share it as it pretty much sums up the way our life is!

My Beautiful Son

I watch you playing
Without a care
It's hard to believe
The cancer was there.

You look so bright
So happy and well
If someone new met you
They never could tell.

Your strength is amazing
Your courage is strong
You've fought this disease
So well for so long.

It's from your strength
That I draw mine
I know you'll come through this
It'll just take time.

Carry on smiling
I will too
Through the hard times
I will carry you.

You are my world
The air that I breathe
I know in my heart
You'll never leave.

Keep strong my love
The battle has begun
But with your strength
It will be won.

Love,

Kelly

Tuesday, June 27, 2006 12:38 AM CDT

DAY + 1,774

The boys had their last hockey game last week and we are finally getting a little brake from the ice arena! I'm sure it won't be long before they will be wanting to go back!

They have 2 hockey camps planned for this summer which will be a lot of fun! Both camps are at our ice arena, but at one of them a bunch of families are going to camp at the campground right next to the arena. We will have a great time doing that!

We started off summer with a 5-night camping trip to Camanche Reservoir! It was close to 100 degrees every day and we were not at hook-ups so the trailer was EXTREMELY HOT! That is the last time we will go without hook-ups! We did have a great time with our friends and our sea-doos! The kids LOVED getting pulled on various tubes!

Bailey and Ronnie went to a fundraiser golf tournament last Friday and we received a donation for St. Baldricks of $14,000.00!!!!!!!

What an AWESOME donation! It was a golf tournament through Ronnie's Dad's work. I believe they raised around $28,000.00 and 1/2 went to us! The other half was given in smaller donations to other charities! What a great event! Ronnie said everyone had a great time and the best part was watching Bailey drive the golf cart around all day! He said he was laughing so hard he couldn't even breathe!

Of course, the next day he came down with a stomach bug and has had a fever and stomach ache ever since! I'm hoping things turn around real soon! We have lots of fun plans for the 4th and I want to take the boys to see the movie CARS!

The day after the 4th, we have a VERY special BBQ planned with Father Pinto! He is the Jesuit Priest Healer who came to Bailey's bedside a little over 5 years ago! He does mass healing ceremonies all over the world, but was ordered by Mother Teresa to come to Bailey's bedside at UCSF - his first such order EVER! We are very blessed to see him again and to have Bailey in his daily prayers! He also placed a photo of Bailey at Mother Teresa's statue in India.

I will try to post some new pictures soon!

Kelly

Wednesday, June 7, 2006 11:33 PM CDT

Day +1,754

The picture above is of Bailey and his buddy Devon. The boys both really admire her! She is a great hockey player!

The boys both had a good game tonight! Cameron had an even BETTER game last Saturday when he scored his first GOAL! It was awesome! He scored it against a 10 year-old goalie too!

Bailey has 5 more days of school and then it's SUMMERTIME, SUMMERTIME, SUMMERTIME, SUMMERTIME!

We have losts of camping trips planned and the boys' counsins are going to come stay with us for some of the summer! We are really looking forward to that! It should be LOTS of fun!

Well, I've got to get Bailey off to bed! I put a picture on the photo page of him with his new GREEN helmet! Check it out!

Kelly

Thursday, May 25, 2006 3:32 PM CDT

DAY + 1,741

So, for the most part, Bailey's scans are good! He had a few things show up that Dr. Matthay isn't too concerned about - 3 dense spots on the CT in the bone of the spine and hips that she thinks is just due to his vast treatments for the past 6.5 years and a cyst on his right hip.

She could tell we were VERY concerned as we like it MUCH better when she just walks in and says everything was negative so she went back and looked at Bailey's scans for the past 2.5 years and it appears that the cyst has been there for at least 1.5 years, it was just a little better defined in this scan as the camera probably caught a different slice than in previous scans. We know this to be true as the cyst that has been on his left kidney for the past 1.5 years did not show up on the last scans in February and is there in this set of scans, just as in previous scans.

Dr. Matthay said she is not concerned about this week's findings, it is just something they will keep in eye on in the future. She is also talking about cutting back on scans and going to every 6 months in the near future! We have NEVER gotten to that point before! It's as scary as it is wonderful to think that Bailey is at a point where they don't feel they need to check him very often! It's scary to think that we will have to wonder for that long of a period of time, but I guess it is a good worry because Dr. Matthay is the LAST person to put things off if she thinks we need to watch closer!

So, after all that, what I'm saying is that things are still good! Bailey looks and feels better than he ever has! He got to go to an AMAZING hockey store while we were down there and we found him a GREEN hockey helmet! He was soooooooooooooooooooooooooooooo excited, it was unbelievable! I never thought I would find a green helmet for him! We were looking for a green stick because we knew that was doable, but when we found the helmet, that was it!

We are off to camp for the long weekend and just wanted to thank everyone for their continued prayers and support! We couldn't have made it through the past 6.5 years without it!

I will take picture of Bailey in his green helmet and try to post them soon!

Love,

Kelly

Sunday, May 14, 2006 3:15 PM CDT

DAY +1,730

HAPPY MOTHER'S DAY!

I am soooooooooooooooooo lucky to be spending this day with the two most precious gifts on earth ~ Bailey and Cameron.

Daddy tried to make them promise to let me sleep in because he is at work today. I guess if you consider 7:00 a.m. sleeping in ~ I got to! Mr. sleepyhead (aka Bailey) was up bright and early and wanted to go outside and play! Followed shortly thereafter by my other sunshine wanting breakfast, wanting to go out front and ride bikes, etc., etc., etc.!

I wouldn't have wanted it any other way! Would I have liked to sleep in ~ yes. Would I rather have two happy, healthy boys wanting breakfast, wanting to go outside, etc., etc., etc. ~ YOU BETCHA!

We are off to spend the rest of the day with Nonny, Papa and Nana! We will have 4 generations together for a BBQ and then we have to hurry home and cheer on the Sharks!

Please start saying those prayers for Bailey as it is again SCAN TIME! We go down Monday, May 22 and will be home Wednesday, May 24. Please keep Bailey in your prayers that he continues to remain NED and that this round of scans show yet again NOTHING!

Kelly

Sunday, April 16, 2006 11:02 AM CDT

Day +1,702

HAPPY EASTER!!!!!

It sure is for us! Four years ago today we were on our way to UCSF because Bailey had a fever and neutropenia. He was inpatient for three weeks and then we ended up staying down there until December 22, after Bailey's BMT and radiation!

Now today we have a 7 and 5 year old fighting over the easter eggs they found! Racing to see who can find the most first! Cameron won!

We had a great time in Santa Cruz despite the 6.35 inches of rain we received in one day alone!

We are headed to Nonny and Papa's for an Easter celebration and then are packing up and heading off again for another four-night camping trip!

We get to take our quads this time and it should be a lot of fun!

While we were in Santa Cruz, we ran Bailey over to UCSF for a VMA. It was 6!!!!!!!!!!!!!!!!

We will be headed back down next month for another round of scans, the first since he finished 2 years of craputane. This next year will add even more anxiety (if that's possible) come scan time, but we will get through it and Bailey will continue to be happy and healthy.

I hope to have new pictures soon. Until then.....

Kelly

Thursday, April 6, 2006 6:36 PM CDT

DAY 1,692

Time has yet again flown by without any updates! All is well! We are currently at an RV resort in Scotts Valley/ Santa Cruz mountains for Spring Break. Yesterday we took Bailey to UCSF for a vma and then went to the SF Zoo! The kids had a blast!

Today was a clear day - NO RAIN - so we took the boys for a bike ride on the coast, then down the Santa Cruz pier and along the Boardwalk. Tomorrow we are planning to head to Monterey to go the aquarium and go to Ronnie's cousin's rock-climbing gym. Then out to dinner with some family.

Saturday is kind of open, but we have lots of stuff on our list we would like to do. Then Sunday, we might go to a Sharks game. We don't have the tickets for that game, but we might go find some and go anyway!

Then we are hoping Monday and Tuesday to spend both days at the Boardwalk riding rides - weather permitting!

We lost 3 neuroblastoma fighters this week, 2 to disease and 1 to complications from all of the treatments received to cure this horrible monster. It is really because two of this boys meant a lot to me. They have endured so much and held a special place in my heart. We will forever miss you Cam and Nick.

I will try to post new pictures of the trip when we get back.

Kelly

Monday, March 13, 2006

Day 1,668

HAPPY BIRTHDAY TO ONE OF MY MOST PRECIOUS GIFTS IN THE WORLD!

Bailey turned 7 on Saturday! He had a FABULOUS birthday! He got to go to a Sharks game and they won in overtime! It was a great game! He then had a party with lots of family and friends and got LOTS of fun stuff! We also celebrated his and his Nonny's birthday a few days earlier where he got even more cool stuff!

It is such a joy to see him so happy and healthy!

I came down with a cold/fever-chills/stomach flu and haven't felt well all weekend, but I made sure his weekend was PERFECT! He deserves it!

I left part of the last post below regarding St. Baldricks! It's this Friday! I'll be sure to post lots of shiny heads soon!


I have changed the color of Bailey's webpage to GREEN for 2 VERY important reasons! The first being it is Bailey's favorite color. The second being that we are putting together a team for St. Baldrick's and Bailey's Daddy and Papa are going to be shaving their heads! We have a team set up under the Stadium Sports & Fitness Club in Reno Nevada named "BAILEY'S HOPE". (SEE LINK BELOW!!!) If you are interested in donating, our team ID# is 1634! We have set a goal of $5,000.00 and we are excited to say that we are almost 1/2 way there! This is our first year in this event and we are soooo excited to be helping out such a great cause!

As you can see from the pictures, the boys are both great! Just keeping us busy with hockey 4 times a week!

Love,

Kelly

Saturday, February 11, 2006 9:42 AM CST

DAY 1,638

CLEAN SCANS!!!!!!

I can't believe I forgot to post here! We didn't get home
'til late Wednesday night and then I just completely forgot! I made soooooooooooo many phone calls that I thought I had it all covered!

Anyway, we got good news yet again! Also, it appears that the cyst on his kidney is gone! In reviewing Bailey's ct scan with Dr. Matthay she did not see anything abnormal on his kidneys are anywhere else! His MIBG was negative and his VMA was <7!!!!!

Also, NO MORE CRAPUTANE!!!!!!!!!!!!!!! After 2 LOOOOOOOOOONG years, it is going to be so weird to not have the headaches, the vomiting, the face falling off, the monthly blood draws that make him late for school, etc., etc., etc.!


It is also VERY SCARY! It has been a LONG time since we have not done some type of treatment! Every time we have stopped treatment, we have not been able to go more than 10 months without a new tumor appearing, so this will be a scary year!

Our hopes and our prayers continue to be that this monster is gone FOREVER!


Please continue to keep Bailey in your prayers as they have worked so far and will continue to work to infinity and beyond!

Kelly

Thursday, January 26, 2006 11:06 AM CST

DAY +1,622

Bailey took his last dose of craputane last night for what we hope is FOREVER!!!!!!!!!!!!!!!!!!

He officially completed 24 cycles - yes 2 years - of craputane and, as far as we know, Dr. Matthay is going to say "THAT'S IT"!

Although this is a very joyous time, it is also VERY SCARY! We have had the craputane as a security blanket for the past 2 years! We have also had 2 years of clean scans! We are very hopeful that the craputane was only precautionary and not the only thing keeping Bailey clear of disease!

Only time will tell and we are so glad that Bailey will be able to enjoy this time without the horrible headaches, the vomiting, the dry, cracked skin, etc., etc., etc.! He is also extremely excited to not have to go to the lab once a month! Although he doesn't even flinch for his blood draw anymore, it will be a nice break from the poking and prodding!

We go for scans February 6-8, so please start those prayers for another round of clean scans. We plan to take one day at a time, as we have for the past 6+ years, and we hope for many, many, many more rounds of clean scans!



I do want to apoligize for the lack of updates! We have been soooo busy! We got Charley, our new puppy, on New Years Eve and he has kept us all busy! A 10 week old rat terrier is quite the handful! I have never seen anything move as quick is this little guy does!

Also, the boys have been busy with hockey, as usual! Bailey had a hockey tournament the first weekend of January and Cameron has started using his goalie equipment the past few weeks! He has played 2 games and he's 1-1! He would be 1-0-1 if his teammate hadn't knocked the puck in after a great save last week! The first game he won 10-5 and last week he lost 6-5!

I am hoping to get his 5 year pictures taken soon in his goalie equipment and then I promise to post pictures as he is wider than he is tall with all of his equipment on!

I will also post pictures of Charley soon! My digital camera isn't working and I have to finish up a role of film to get some pictures of Charley!

Our buddy, Haley, is at Stanford for 6 weeks of radiation. Please keep her and her family in your prayers and post something fun in her guestbook. Her webpage is:

www.caringbridge.org/nv/haley

Thanks for stopping by! I will definitely post after scans!

Love,

Kelly

Wednesday, December 28, 2005 11:19 AM CST

DAY +1,593

We all had a GREAT Christmas with all of our family here! We got to have cousin Lexi from Texas this year, which was pretty neat!

Then yesterday my baby turned 5! I can't believe Bailey is almost 7 and Cameron just turned 5! It doesn't seem possible that he could be over 2 or 3 years old!

We are having a party today for Cameron and then sometime in January he will get to have a kids party at the swim center!

Well, I'm off to get the last minute stuff for tonight's party!

HAPPY NEW YEAR to everyone! We will be celebrating it with a NEW PUPPY!

Kelly

Wednesday, December 7, 2005 7:30 AM CST

DAY 1,572

PLEASE PLEASE PLEASE go to


www.lunchforlife.org

and donate to Bailey's Giving Tree. Every $5 given, gives Bailey an ornament on his tree, gives you a giving code, which, when you enter it on the home page gives Bailey a chance to win cool prizes, and MOST IMPORTANTLY GIVES $5 TOWARDS A CURE FOR NEUROBLASTOMA!!!!!

PLEASE HELP US OUT AND DONATE TODAY ON BEHALF OF BAILEY! Go to Donate Here on the home page and make sure you choose Bailey Johnson from the drop down list of who your donation is for or use the gift code 15294 or 15295!

MY GIVING CODE IS 15294 - PLEASE USE THIS WHEN GIVE FOR BAILEY AND YOU WILL ALSO GET YOUR OWN CODE YOU CAN PASS ON TO OTHERS!

THANK YOU!

Kelly

Wednesday, November 23, 2005 6:03 PM CST

DAY 1,558

CLEAN SCANS!!!!!!!!!!


We just got back from hearing the news we all wanted to hear! Another round of clean scans! Dr. Matthay said she couldn't be happier with how well Bailey looks and how well all his test results came out!

We will return in February, after completing 2 years of accutane for baseline scans of stopping treatment. At that time, Bailey will also have an echocardiogram and an audiogram to check his heart function and hearing!

Our prayers have yet again been answered and we will have another wonderful holiday season full of thanks and answered prayers!

Thank you for all the prayers ~ they worked again!

Love,

Kelly

Sunday, November 20, 2005 9:52 PM CST

DAY 1,555

HE SHOOTS, HE SCORES

Bailey got his first goal in a hockey game yesterday! He was soooooo excited! He played his best game ever, even if he hadn't scored the goal!

We then headed to the Sharks game and the boys had a blast! The Sharks lost in a shoot out, but it was still a good game!

We start the scan process tomorrow and will complete it on Wednesday. Please keep Bailey in your prayers this week for another round of clean scans!

Kelly

Monday, November 7, 2005 6:01 PM CST

Day +1,542

It has been a long time - yet again! We have been busy! The boys are good!

Bailey has his next set of scans the week of Thanksgiving. It will be nice to get yet another round behind us.

We are all having a pretty tough day today as we had to put our dog, Bear, to sleep. He was having some major neurological problems and his whole back end didn't work any more. We have had him on steroids for 3 months and they helped until last night when he lost all function. He was the BEST dog ever and we are all missing him terribly.

Bailey has been hit the hardest, as I knew he would. He is just such a compassionate person and he loves and cares for others so much. Right now, he doesn't want to get another dog - he just wants BEAR back!

In time, he will understand and hopefully someday we can get another dog that is at least half is wonderful as Bear was.

Kelly

Monday, November 7, 2005 6:01 PM CST

Day +1,542

It has been a long time - yet again! We have been busy! The boys are good!

Bailey has his next set of scans the week of Thanksgiving. It will be nice to get yet another round behind us.

We are all having a pretty tough day today as we had to put our dog, Bear, to sleep. He was having some major neurological problems and his whole back end didn't work any more. We have had him on steroids for 3 months and they helped until last night when he lost all function. He was the BEST dog ever and we are all missing him terribly.

Bailey has been hit the hardest, as I knew he would. He is just such a compassionate person and he loves and cares for others so much. Right now, he doesn't want to get another dog - he just wants BEAR back!

In time, he will understand and hopefully someday we can get another dog that is at least half is wonderful as Bear was.

Kelly

Friday, October 14, 2005 6:49 PM CDT

DAY +1,518

Just a quick update to let everyone know that all is good in the Johnson house!

The boys have both had pink eye ~ in both eyes ~ and colds, but nothing out of the ordinary. And, of course, it all had to happen on the only 4 days we leave the kids in over a year!

We went on a 4 night houseboat trip to Shasta Lake ~ adults ONLY! It was lots of fun!

We have been keeping busy with school and hockey and getting a new engine put in my 1.5 year old car! I can't believe my engine couldn't last more than 1.5 years!

Needless to say, when we get it back, we are DUMPING it! We are looking for a new car and hoping to get something half-way decent out of the van.

Well, we're off to a swim party the boys were both invited to. Thank goodness we have an indoor swim center as the snow level is supposed to drop to below lake level by tomorrow some time!

Kelly

Monday, September 26, 2005 9:54 PM CDT

DAY +1,500

I had no idea it had been almost 3 weeks since my last posting! Time flys when your having fun and extremely busy!

I am so excited to be able to post that we had an Alex's Lemonade Stand this weekend and raised close to $2,300!!!!! We sold close to 450 cups of lemonade, but most importantly we raised A LOT of awareness! We really opened some peoples eyes to the horrors our children face every day!

A better part of our donations were from people just dropping money in our jar! We would offer lemonade or other merchandise, but they just wanted to give to our cause!

Bailey is on yet another round of craputane and doing pretty good! He is LOVING first grade still and just got an AWESOME progress report! He was either at grade level or above grade level in ALL areas! His teacher also said that his is a "joy" to have in class!

THAT'S MY BOY!

Cameron is loving pre-school still, but I think could be challenged a little more! If they didn't have the age requirements, I think he would do just fine in kindergarten!

Thanks for checking in!

Kelly

Wednesday, September 7, 2005 10:24 AM CDT

DAY +1,481

We had a great time at the cabin this weekend! It ended up being pretty windy, so we just hung out and RELAXED!

Bailey lost ANOTHER tooth and this time, he didn't eat it! One out of 4 isn't bad, I guess!

It is definitely starting to feel like fall around here! They say maybe some snow on top this weekend! I don't know if I am ready for that, but the cooler weather sure feels nice!

Please keep our buddy Haley in your prayers as she is having brain surgery today. This is her third such surgery in the past 14 months!

Kelly

Monday, August 29, 2005 10:29 AM CDT

DAY +1,473

Bailey is LOVING 1st grade! He loves going to school everyday and his teacher seems really nice!

He lost his third tooth the other day and YES he ate it again! He has now lost 3 teeth, and eaten ALL 3!

The tooth fairy must think he is crazy!

We are getting ready for a fun weekend with our neighbors and cousins at the family cabin at Tahoe! The kids should have fun and there are fireworks on Sunday!

Bailey is starting back to hockey on Wednesday! He can't wait! Cameron's lessons start in a couple of weeks!

Bailey is on yet another round of craputane and has had the usual headaches! We are hoping only a few more rounds and he will be done! We will be excited, but at the same time very nervous because then we feel like we aren't doing anything to ensure the beast stays away!

Well, I'm off to play games with Cameron as now all of the neighborhood kids are back in school and he has no one to play with!

Kelly

AUGUST 17, 2005

DAY +1,461

HAPPY 4TH TRANSPLANT BIRTHDAY TO MY PRECIOUS BOY!

I can't believe it's been 4 years since we were in that hell! It is SOOOOOOOO wonderful to see how happy and healthy you are today! In 1st grade and LOVING life!

What a gift you have given to us! Every day, every moment is such a gift and we appreciate every moment even more when we think back to all you have been through!



Somewhere I got off by a lot of days on my day count, but what's important is that one thousand four hundred and sixty one days after the day that saved my baby's life, he is here, happy, healthy and a joy to everyone around him!

Kelly

Friday, August 12, 2005 5:02 PM CDT

DAY 1,256

Sorry it has been so long in between updates again!

Bailey started 1st grade this Wednesday and absolutely LOVES it! It has been a bit of an adjustment for Cameron to have his brother and all of his other playmates gone all day, but he is surviving!

I, on the other hand, have had a pretty rough week! We were only a couple of cars behind a horrific accident/explosion/fire this past Sunday on our way home from the beach. A pickup truck hit a semi and there was an immediate 200-foot-high explosion. Of course Ronnie decided to run right in and help (it's in his blood since he is a firefighter/paramedic) and one of the victims was ejected and burning in the middle of the road. There were between 6 and 8 more explosions while Ronnie was trying to help and then I lost site of him and couldn't find him. It was several hours before I knew if he was okay (WHICH HE WAS!!!!!)!

All of the highway patrol officers, firefighters and other personnel that were on scene said it was the most horrific scene they have ever been to and they didn't see what we saw!

I have suffered from severe PTSD (post-traumatic stress disorder) since the accident and I am now trying to learn to cope with the incident.

I don't know how the soldiers do it seeing this stuff over and over! I sure do have a new appreciation for what they go through and don't wish this kind of experience on my worst enemy!

I am seeking help and hope to have the worst behind me soon!

But most importantly ~ BAILEY IS HAPPY, HEALTHY AND IN 1ST GRADE!

Kelly

Wednesday, July 27, 2005 10:32 PM CDT

DAY 1,240

SO WE GOT THE NEWS ONCE AGAIN WE ALWAYS PRAY FOR!


CLEAN SCANS


Bailey did absolutely awesome this week! His VMA remains at 7 and everything else looks PERFECT! We don't go back till Thanksgiving!

THANKS FOR ALL THE PRAYERS! THEY WORKED AGAIN!

Love,

Kelly

Saturday, July 23, 2005 11:06 AM CDT

DAY +1,236

We're home from Collins Lake and we had a BLAST! The boys were either fishing or swimming the entire time!

I've got some great pictures of the kids with their catches and as soon as I figure out how to put them on the page without ruining the graphics, I will!

I have a picture of them both with a 6.5 lb catfish, a 3 lb trout and 3 other good size rainbows! They "helped" Dave catch all of them! Then I have a great picture of Bailey with a 1/2 lb Bluegill (which is BIG for a Bluegill) that he caught ALL BY HIMSELF!

We are home for two days to catch up on laundry and then off for SCANS!

PLEASE KEEP BAILEY IN YOUR PRAYERS FOR ANOTHER ROUND OF CLEAN SCANS!

I will post results Wednesday evening!

Kelly

Wednesday, July 13, 2005 12:03 AM CDT

DAY 1,226

I found this poem on another CB website. Pretty much sums it up!

Late last night I found myself beside my child's bed;
He was sleeping peacefully as I felt his fevered head.
In my mind debate began as I wondered what was best;
Should I wake him up for medicine or leave him there to rest
To wait would mean three hours to let the fever rise;
But waking him from peaceful sleep to me seemed less wise

So I sat there in the darkness and asked a question silently,
"What do I do?" I asked myself, thinking no one else could see
And as I asked the question, my Father must have heard;
In a still small voice he answered my silent spoken word.
He said, "just let me do it, I'll take care of him for you;
You know that I am capable and you know I love him, too."

So I left the two together and when I got back to my bed;
My mind wandered as I prayed and in my prayer I said,
"Dear Lord, if I've done something, spare him pain and let me see;
And my Father gently told me, "this sickness is not from me."
My mind was still not focused and my prayer kept rambling on;
Until I said again, "Dear Lord, have I done something wrong?
Do I not appreciate this son you have blessed me with;
Have I not cared well enough for this most precious gift?"

Again, my Father answered with much patience and great love.
"I told you the child's sickness is not from above.
This isn't me I told you, but if you'll just leave it in my hands;
I'll work it for good like always and fit it into my great plan."
And as my Father promised, He took care of my son;
The healing wasn't overnight but I know the battle's won.
When my Father comes and asks you to leave someone in his care;
The best thing you could ever do is just to leave them there.
You may not understand it or know exactly what's in store;
But no matter how much you love them, My Father loves them more.

Tuesday, July 12, 2005 0:03 AM CDT

DAY +1,225

Well all of our latest travels are behind us and we had a GREAT time!

Now it's on to HOCKEY CAMP! Bailey got to meet Brian Trottier, Sr. today at registration and he was the nicest guy!

Bailey has camp the rest of the week and then we leave Saturday for 6 nights at Collins Lake! Then home for 2 days, then off to SF for scans!

Please keep Bailey in your prayers for another round of clean scans! Scan time is SOOOOOOOOOOOOOO stressful! I don't think it will EVER get easy! Especially with A LOT of NB kids relapsing lately, it just brings that much more fear to the surface!

I will hopefully have new pictures from camp soon and will try to get them on here! Hopefully even some with some of the celebrities from the celebrity golf at Edgewood this week - some try to stop by the camp!

Kelly

Thursday, June 30, 2005 12:03 AM CDT

DAY 1,213

I truly apologize for the lack of updates! But please know it is because we have been having so much fun! Bailey's last day of school was June 16 and we left June 17 for a week of camping at Collins Lake! We had A LOT of fun with our neighbors joining us for the first couple of days and then the kids cousins, uncles, grandma, great-grandma and great-grandpa joining us for the end of the week! We went on a 2-story party boat that had a spiral slide off the top and the kids got to go tubin' on our friends ski boat! They also did LOTS of fishing from Fireman Dave's fishin' boat and got to see Dave's son catch a 12 pound catfish! It was the biggest, ugliest thing I had EVER seen!

We came home last weekend and have been busy trying to play catch-up and are off again tomorrow for grandma's house for the 4th! We were going to stick around Tahoe, but our camping plans fizzled and we decided to get away from the zoo! We are taking our SeaDoo and going to meet our neighbors on the Delta on Sunday, have a HUGE family BBQ on Monday, watch 5 fireworks shows from Grandma's Monday night, go to a SF Giants game on Tuesday and head home Wednesday!

Then the following week Bailey has his hockey camp (HockeyLakeTahoe.com)! He is SOOOOOOOOOOOOO excited for that! It should be LOTS of fun for him!

Then the day after the camp finishes we are back off to Collins Lake for another week of fun! Nonny and Papa are going to come for the first half of the week with us and then I'm sure the kids will be Fireman Dave's sidekicks again for fishing! Bailey is the official referee for keepers or not while on his boat and, of course, even an inch-long blue gill is a keeper to him!

We will go straight from Collins Lake to UCSF for another round of scans! Yes, it has been 4 months! Bailey will undergo his usual VMA, CT, MIBG and doctors appointment on the 25-27 of July! Please pray for another round of good news for our precious angel so we may return home and get ready for FIRST GRADE!

Bailey starts first grade August 10! He is SOOOOOOOOO excited! We'll have to see how well I do with him gone ALL day! Cameron goes back to pre-school for one more year starting September 6!

Well, I think I have cleared up the lack of updates and probably the sparse updates for the next few weeks although I promise to try to throw a few in here and there! I am also hoping to post pictures from Bailey's kindergarten celebration and fishing!

HAPPY 4TH TO ALL!

Kelly

Tuesday, June 7, 2005 3:43 PM CDT

DAY +1,190

Time has yet again flown by without a chance to update! Everyone is doing great! Bailey is on yet another round of craputane and things are okay!

Bailey has 7 more days of Kindergarten and then he will be a big 1st grader! We have his kindergarten celebration tomorrow night (since his principal won't allow an actual graduation)! I know I won't be the only one crying, but to make it from being told he won't see his first birthday to graduating kindergarten is a pretty big deal to me!

He has come so far and endured so much in his short little life so far! To say you are a 4-time cancer survivor and you have been battling cancer for 5.5 years and you are only 6 is A LOT! And yet he still wakes up with a smile every day!

WHAT A JOY!

Hug your kids and tell them you love them! Each day is truly a gift!

Kelly

Wednesday, May 25, 2005 12:43 AM CDT

DAY +1,177

Wow, I didn't realize it had been so long since my last update! We've been extremely busy and I seem to go from one illness to the next ~ never quite recovering from the last!

Anyway, Bailey is GREAT! He had his last two hockey games this past weekend and won both of them! Their final record was 6-2-2! He was pretty excited! He was named as the Faceoff King for the Rink Rats and he was pretty proud of that title!

He has just under a month of kindergarten left! I can't believe my little baby is going to be in first grade! Cameron's last day of pre-school is tomorrow! He had a great year and is looking forward to another year at pre-school!

We are going camping this weekend for the holiday weekend with a couple of other families in our neighborhood! It should be A LOT of fun! We got a SeaDoo a couple of weeks ago and the kids can't wait to ride it! They had a blast last summer when we had one for a day!

Our buddy Haley has an MRI this Friday ~ PLEASE keep her in your prayers for either stable or shrinkage of her brain tumor! A link to her site is below!

Happy Memorial Day to everyone!

Kelly

Monday, May 9, 2005 7:42 PM CDT

DAY +1,161

So it wasn't just the craputane! We headed for the game and only made it about half way when Bailey completely destroyed my car! Poor guy was so upset that he did what he did, but he couldn't help it! We turned around and headed home. On the way home, Cameron fell asleep and wasn't quite himself for the rest of the afternoon. It wasn't long after we got home that I got sick too!

Bailey and I slept the afternoon away and he is now doing MUCH better! I, on the other hand, haven't kicked this bug yet! I'm just glad it stick around Bailey for too long as we can't afford for him to lose any weight!

He was very upset that he missed his hockey game and upset that my mother's day wasn't the best, but I told him every day is mother's day for me with my two precious angels!

We're off to another busy week and looking forward to another hockey game this weekend!

Kelly

Sunday, May 8, 2005 11:35 AM CDT

DAY +1,160

HAPPY MOTHER'S DAY!

I got to spend my morning with Bailey over the toilet! The craputane is back tearing him up again! He is feeling a little better now and wants to still try to go to his hockey game!

GO RINK RATS!

Kelly

Tuesday, April 26, 2005 7:55 PM CDT

DAY +1,148

The Rink Rats are 2-2-2! They won 6-2 on Saturday and lost 2-1 on Sunday!

Bailey and Cameron had LOTS of ice cream last night! We went to the Ice Cream Social at Cold Stone Creamery for the Make-a-Wish fundraiser! The newspaper came and took LOTS of pictures of the boys with their ice cream! What a wonderful fundraiser! The owner of our local Cold Stone is a sweetheart and gave the boys WAY too much ice cream! I should have left them with her for a while!

Hopefully their picture will be in the paper tomorrow! It would be even better if it was on the internet! Check out www.recordcourier.com!

Not a whole lot else new here!

Kelly

SUNDAY, APRIL 17, 2005

DAY 1,339
***CHECK OUT THE NEW PICTURES ***

Sunday Update....

Bailey won his hockey game today (5-3)!!!!! He was so tired by the end of the game, but still had just enough energy in him to put on quite the little celebration!

There were only 8 kids total on his team today so that meant A LOT of ice time! And when you are playing full ice with those little legs, thats A LOT of skating!

He did just AWESOME and (through the tears of joy) it was the most fun I think I've ever had watching him in his glory!

We had some AWESOME pictures of Cameron taken yesterday and I will post them in a couple of days!

The boys are both so very proud to announce that they can ride their bikes without training wheels! Cameron took off like a flash and never looked back! Bailey has a little more hesitation, but he is definitely getting the hang of it. At 6:30 this morning Cameron woke me up asking if he could go ride his bike! He is so very proud of himself!

The picture above and the ones on the photo page were taken last week with cousin Lexi from Texas! All three had a great time playing together and the boys have missed her very much since she left! They wanted Uncle Corey to buy the house next door that is for sale so that they could move in and see her every day!

We are getting ready for another weekend of hockey! Bailey has a game at 10:30 this morning and 11:15 tomorrow morning! GO RINK RATS!

Bailey will be done with another round of craputane on Wednesday! YEAH! I don't want to jinx us, so I won't say that things seem to be going good!

Until next time...

Kelly

Monday, April 11, 2005 7:49 AM CDT

DAY 1,333

4 to 4

That was the score of both of Bailey's hockey games this weekend!

HE HAD AN ABSOLUTE BLAST!

The Rink Rats did pretty good against the Ice Hogs! The Ice Hogs have 2 kids that play goalie, and our team has none! We just try to get a volunteer!

There are only the two teams so they will play each other over and over and over, but Bailey doesn't seem to care ~ he is playing a "real hockey game"!

He is on yet another round of accutane, of which we are going to continue until at least January.

He is glad to be back at school and is the Mighty Mustang of the week for the second week! Each kid usually gets picked to be the Mustang for one week, but I guess it worked out that following Spring Break, they didn't think we would be too prepared in time so they planned it for mostly this week and not last. Well, Bailey is taking full advantage of both weeks!

He just loves school! He was very upset the other day though when we discussed him going into the first grade and we told him he wouldn't have Mrs. Sullivan! He thought she would continue to be his teacher right on through school! If only we were sooooo lucky!

Anyway, all is good around here! We got to spend the weekend with Uncle Corey and Cousin Lexy from Texas! The boys and Lexy had a blast! We are going to get their pictures taken this afternoon so I'm sure I'll have new pictures soon!

Kelly

Friday, April 1, 2005 9:16 PM CST

DAY +1,323

*****SEE NEW PICTURES******

WE'RE HOME! After 2 weeks of being gone, home is AWESOME!

We had a GREAT time down at Disneyland, although we wish we would have had more time to see some family! Every day was jam packed with lots of activities and by the end of the day we couldn't walk another step!

The boys thoroughly enjoyed Disneyland, California Adventure and Knott's Berry Farm! They are both still a little small for some rides, but for the most part could ride almost all of the rides and enjoyed them! I even got Bailey to get a couple of pictures taken with characters! I will change the pictures a couple of times with more pictures! I am still waiting to finish the last role of film!

Bailey did great again for his scans! I set it up so that his CT scan was on Tuesday, followed by his MIBG injection, which meant he only had to be poked once (well twice, since the first fool couldn't start an IV!). With the emla cream, Bailey did great and didn't even flinch!

He then had his MIBG scan the following day, followed by our appointment with Dr. Matthay. It worked out great having the CT the day before because the report was already on the computer.

We were exstatic to learn that all was good! We then decided that we would continue with the craputane until at least January 2006 as this is the longest we have gone with no new suspicious spots! Even though the last two were ganglioneuromas, we don't want anything to show up! We have now made it 15 months without any suspicious spots! Before we never made it more than 10 months!

Bailey also got to return to the ice rink last night! You would have never known he hadn't been on the ice for 8 weeks (besides a little bit on his birthday). He had "tryouts" for a league he is going to be starting! He will have one practice a week and one game each weekend!

Thank you all for all of the prayers! They worked once again! We are thankful for every day with our angel and we want many, many, many more!

Love and prayers,

Kelly

Wednesday, March 30, 2005 5:47 PM CST

DAY 1,321

We got the results we were hoping for! Bailey's scans were GREAT!!!!! He did AWESOME! We are heading home first thing tomorrow!

We had a great time at Disneyland and are ready to come home! I will update more when we get home!

Kelly

Thursday, March 17, 2005 11:55 AM CST

DAY 1,308

HAPPY ST. PATTY'S DAY!

BAILY WILL NOT BE ABLE TO BE PINCHED UNTIL AFTER 1:00!

Why? Because he will have his GREEN cast until 1:00 and then IT COMES OFF!!!!!!!!

He is sooooooo excited to get his cast off and wants to go to hockey practice tonight - NOT!

We leave first thing tomorrow for Disneyland and then will go straight to San Francisco for his next round of scans! Get those prayers a rolling for another clear round!

Upon our return, he will get to get back in the swing of things (literally) and start his hockey game again!

He is also VERY excited because he is going to attend a 5-day hockey camp this summer and there is a very good possibility that some BIG hockey stars will be there! They camp is immediately following the celebrity golf tournament at Edgewood where the likes of Mike Modano, Mario Leimeux, etc. attend each year!

It will be BEYOND a dream come true if he gets to hang with the big guys!

Anyway, I will post when we get back to the Bay Area for scans AFTER DISNEYLAND!

Kelly

Friday, March 11, 2005 10:55 AM CST

DAY 1,302

HAPPY BIRTHDAY TO YOU!

HAPPY BIRTHDAY TO YOU!

HAPPY BIRTHDAY TO MY MOST PRECIOUS ANGEL IN THE WHOLE WIDE WORLD!

HAPPY BIRTHDAY TO YOU!

I can't believe you are the big 6 years old today! A day we treasure, a day we dreamed about, a day we will remember FOREVER!

You have a HUGE funfilled weekend ahead! Starting with about 35 people tonight for a celebration and then......

Your big ice skating party tomorrow!

It brings us more joy than you can ever imagine to be able to have this time with you! Every day is a gift and we treasure every moment! You are turning into such an amazing little man!

WE LOVE YOU WITH ALL OF OUR HEART!

Love,

Mommy, Daddy, Cameron, Bear & Frosty

Tuesday, March 1, 2005 11:30 PM CST

DAY 1,292

Things have seemed to calm down around here a little! Bailey's belly is much better. It took a few days of cutting out all dairy, but he seemed to recover well!

He is now getting VERY anxious for his BIRTHDAY! 10 days and counting!

I can't believe he is going to be 6 years old! He is truly my hero and an AMAZING child!

All is relatively quiet around here, besides all of the "hockey games" we have every night in our living room!

The cast comes off in 16 days and then I'm sure he will be raring to go! We'll be off to Disneyland for a week a couple of days after the cast comes off!!!!!

We are going to try another round of craputane at a lower dose starting the end of next week - HAPPY BIRTHDAY - NOT!

It better not mess with his birthday! Time will tell!

Kelly

Thursday, February 17, 2005 2:18 PM CST

DAY 1,280

The fun never stops at the Johnson house! Bailey had a horrible day on Tuesday with major stomach problems. It seemed like he had gas and we tried to get him through it.

That wasn't going to happen! After being up all night with him and seeing him in more pain that I think I ever have, we went to the ER.

We spent 6.5 hours there getting blood work, ct scans, urinalysis, IV fluids, etc., etc. trying to figure out what the problem was.

With his history, we felt we couldn't be too safe and wanted to make sure we were ruling out any major problems!

Fortunately and unfortunately, it appears that the craputane is the culprit! Fortunately, because it meant it wasn't appendicitis or something major that required surgery. Unfortunately because his body may be telling us that it can't handle craputane any longer.

He is going to get a 3 week break from the craputane (not finish this round) and then we are going to try next round at a lower dose and see how he tolerates it.

If he can't tolerate it, our decision that we were going to have to make at the end of March will be made for us. If he can, then we will have to discuss the efficacy of the lower dose. Is it worth putting his body through this with the dose not being as high as it should!

We will deal with that when the time comes. In the meantime, we are all hoping for more restful nights and pain free bellies!

Kelly

Monday, February 14, 2005 10:25 AM CST

DAY 1,277

HAPPY VALENTINES DAY!

Bailey's arm is doing pretty good! We go Wednesday to see the orthopedist and Bailey is really hoping to get a GREEN cast!

It is going to be a LONG 4-6 weeks without any hockey! He is already going STIR CRAZY!

We have lost two neuroblastoma warriors in the last two days. Please offer their families support and prayers as they face the toughest days of their lives.

www.caringbridge.org/la/stanton

www.caringbridge.org/sc/joshua

Hug your kids and tell them you love them ~ even when they are driving you CRAZY!

Kelly

Friday, February 11, 2005 12:28 AM CST

DAY +1,274

Bailey scored an AMAZING goal in his hockey game last night and then finished the play by slamming into the boards and breaking his arm!

I heard him scream and knew instantly that something was very wrong! He falls a lot on the ice and just gets right back up! This time he couldn't get up and when he did he couldn't/wouldn't move his arm!

He's one tough little dude because by the time we got to the ER he wanted to leave because he was hungry! Fortunately the ER visit was pretty quick and we were able to get home and get him his cheese tortellini w/ alfredo sauce that he requested!

He is at school today and I'm hoping will have a restful weekend! We go to an orthopedist next Wednesday to get a smaller cast on (right now it goes above his elbow). He is hoping to get a GREEN cast! That was the only part he liked about this whole broken bone thing! The possibility of a GREEN cast!

I guess we will be postponing his birthday party at the ice rink as he sure won't be able to skate!

As long as his arm heals well, that's all that matters!

Keep him in your prayers! And me and dad too as we both might have to wear his hockey helmet/mask to bed at night with him sleeping with us!

Kelly

Friday, January 28, 2005 3:50 PM CST

I JUST GOT OFF THE PHONE WITH HALEY'S PARENTS AND THE SURGERY WENT WELL! PRELIMINARY REPORTS SHOW LOTS OF GOOD NEWS! HALEY ALSO MAY BE GETTING OUT AS EARLY AS TOMORROW! PRETTY GOOD FOR HAVING BRAIN SURGERY JUST TWO DAYS AGO!

THANKS FOR ALL OF THE PRAYERS FOR HALEY!

Kelly

Wednesday, January 26, 2005 10:38 AM CST

DAy 1,258

PLEASE KEEP HALEY IN YOUR PRAYERS TODAY AS SHE IS HAVING SURGERY TO DEBULK THE TUMOR AND FOR A NEW PATHOLOGY TO BE DONE!

Our thoughts are with you Lin and Haley!

Love,

Kelly

Tuesday, January 18, 2005 8:38 PM CST

DAY 1,250

I can't believe that January is almost over! The boys have been busy, as usual, with hockey! We go the next two nights!

They were both healthy for about a week and now the snot has started again! Oh joy!

In our last visit to Dr. Matthay I asked if there was anything we could do to try and help boost Bailey's immune system and she said "expose him"!

Well, they're both exposed because the snot pretty much hasn't stopped since August when Bailey started Kindergarten!

We really don't have a whole lot new going on, just the usual busy schedule driving all over the place for school, hockey, etc., etc.!

Please keep Haley in your prayers as she is going to have surgery January 26 to debulk the new tumor growth and have another pathology done. She then will start some treatment that probably won't be the most fun! She is one tought little cookie and I know she will do well!

Kelly

Friday, January 7, 2005 8:52 PM CST

**JUST WANTED TO ADD THAT THE PICTURE ABOVE IS ONE OF THE PICTURES TAKEN FOR THE BMT INFONET BONE MARROW TRANSPLANT SURVIVOR'S CALENDAR THAT BAILEY IS IN! THIS PICTURE WAS TAKEN ALMOST 1 YEAR AGO!

Day 1,239

Please stop by Haley's website and offer her and her family support! They received devastating news that her tumor has grown! I know the pain they are feeling right now, so please offer your support during this horrible time!

I know how tough Haley is, but this is not the news they had expected to receive so soon after getting such wonderful news of the change in diagnosis.

Lin, we're here for you and our hearts and prayers are with you all right now!



We received about a foot of snow today! I shoveled the driveway 3 times to try and keep up! It is now drizzling rain a little bit so I'm sure the roads are going to be a lot of fun tonight!

We're home safe and sound, Dad's at work shoveling and the boys are antsy to get out in all that snow!

Prayers for Haley,

Kelly

Wednesday, January 5, 2005 7:28 PM CST

DAy 1,237

HAPPY NEW YEAR!

We had a great time in Tahoe for New Years! The kids had a blast playing in all the snow! We are expected to get A LOT more this weekend!

On December 29, it was 5 years since our nightmare started! It was so wonderful to have the boys playing with their cousins, ice skating, sledding, having snow ball fights, etc., etc.! What a difference from 5 years ago when we had one sick little boy on our hands!

Bailey got to play in his first 3 on 3 hockey game last night and he had a BLAST! The ice arena is trying to get a little league put together, so hopefully he will have something more structured here soon!

The boys both start back on their hockey lessons tomorrow night! It will be great once we get Cameron caught up on the lessons and he can play in the leagues too!

Please keep our buddy Haley in your prayers! She has an MRI at Stanford tomorrow and we all need to pray that her tumor is still "stable"!

Again, Happy New Year!

Kelly

Friday, December 24, 2004 1:22 PM CST

Day 1,225

MEEEEERRRRRYYYYYYY CHRISSSSSSTMAAAAAAAS!

We are home and are going to have the best Christmas EVER! The boys can't wait for Santa to come tonight!

Bailey's VMA was 7 and the CT showed absolutely no change in ANYTHING! The cyst is still there, but has not changed and when we asked Dr. Matthay if she was comfortable going until April to scan, she said she wasn't really concerned last time because it is just a cyst!

She was also exstatic about Bailey's calendar! We signed a release and she wants to use it on their website, brochures, etc., etc., etc.

I have never seen her show so much emotion (which is somewhat understandable considering her line of work!)! She hadn't even told us the results when Bailey gave her the calendar and she went running out of the room to get the consent form. She then realized we were probably a little more anxious about the results and came back to tell us the good news!

This nightmare started for us 5 years ago tomorrow! Bailey woke up with a huge, hard belly and couldn't keep anything down! We ended up in the ER where they informed us that he was constipated! Four days later we finally figured out what was going on and on December 29, 1999 we were admitted to UCSF with a preliminary diagnosis of Stage IV Neuroblastoma!

Look at my boy now! What an angel! We have many songs we dedicate to him, but I think the best is Chumbawamba's Tubthumping! The lyrics go something like this....

I get knocked down
But I get up again
You're never gonna keep me down

I get knocked down
But I get up again
You're never gonna keep me down

And Bailey has proved time and time again that he'll get up again! He is truly a hero!

He was such a stud on Tuesday! He drank about 20 ounces of contrast for his CT and then didn't even think of flinching when they started the IV for the IV contrast! He climbed right up on the machine, layed down and put his arms above his head! I know he doesn't know any different, but it still amazes me how this all just seems like another day to him. And I know why as this is all he knows!

We now also have, I think, one of the toughest decisions to make concerning his treatment! Before, things were somewhat cut and dry because we knew we had to do something and we were always confident at being as aggressive as possible because we knew he could handle it.

But now we are left with a decision that makes us feel we are damned if we do and damned if we don't!

Bailey had clear scans last week and, besides when he was on extreme doses of chemo, or just finished extreme doses of chemo, we have never gone more than 10 months without a new mass appearing! We have now gone 1 year with nothing new that is of concern show up on scans.

Bailey has been on accutane for one year in February. Is it the accutane? Have we finally rid his body of every last nasty cell? If we take him off, will something come back? We know he can't be on it forever! His liver seems okay right now, but we don't want to push it too far! His last labs showed an increase in his triglycerides. Is this only a one-time thing or is this going to be a trend?

We actually don't have to make a decision until April when we go back for scans, but in the meantime, we need to come up with somewhat of a game plan.

My thoughts right now are to suggest that come April we take him off for six months, then put him back on for 6 months, then continue with a six month on-off cycle until we obtain at least a few years of clear scans. And, as long as his little body can continue to handle the accutane, at least give us something to feel we are helping to keep the beast at bay!

Anyway, the bottom line is my angel is hear for his 5th Christmas and he is happy and healthy and can't wait to see what Santa leaves under his Christmas tree tomorrow morning!

Every day is a gift!

Kelly

Tuesday, December 21, 2004 9:44 PM CST

MERRY CHRISTMAS!!!!!!!!

IT IS FOR US!!!!!!!

THE CYST IS STILL THERE, BUT UNCHANGED SO WE DON'T GO BACK FOR 4 MONTHS!

WE'RE PARTYING SO I'LL UPDATE MORE LATER!!!!!


KELLY

Friday, December 17, 2004 11:53 AM CST

DAY 1,218

We are off to San Francisco today for Bailey's next CT scan!

PLEASE KEEP BAILEY AT THE TOP OF YOUR PRAYER LIST THAT THE SCAN SHOWS EITHER NO CHANGE IN THE CYST ON HIS KIDNEY, OR THAT IT IS GONE!

I will keep this journal posted as we have news ~ which won't be until Tuesday late afternoon!

LOVE AND PRAYERS

Kelly

Sunday, December 5, 2004 3:51 PM CST

DAY 1,206

Sorry it has been so long yet again! I barely find time to stop by and check in on all the other kids sites!

The boys are both doing great! They have stayed busy with school, hockey and all the snow we got at Thanksgiving! I don't think our high temperature has been above freezing since the snow fell!

Bailey has one more week of school and then he gets 3 weeks off! I'm hoping to keep him healthy this week and have a 3 week break from all the bugs!

He has his winter concert at school on Wednesday! I can't wait to see what they do! His music teacher was my music teacher when I was in elementary school!

Cameron still loves preschool and loves his hockey lessons!

We decorated our house last night and the boys did an amazing job on the tree! We basically let them put all of the ornaments on and it is the best looking tree I've ever seen!

For now, all is quiet in the Johnson house and I am content to keep it that way for as long as possible!

Only 20 more sleeps until Santa comes and only 22 more sleeps until my baby turns 4!

We have a busy and fun month ahead!

Happy, Healthy Holidays to All!

Kelly

Sunday, December 5, 2004 3:51 PM CST

DAY +1,206

Sorry it has been so long yet again! I barely find time to stop by and check in on all the other kids sites!

The boys are both doing great! They have stayed busy with school, hockey and all the snow we got at Thanksgiving! I don't think our high temperature has been above freezing since the snow fell!

Bailey has one more week of school and then he gets 3 weeks off! I'm hoping to keep him healthy this week and have a 3 week break from all the bugs!

He has his winter concert at school on Wednesday! I can't wait to see what they do! His music teacher was my music teacher when I was in elementary school!

Cameron still loves preschool and loves his hockey lessons!

We decorated our house last night and the boys did an amazing job on the tree! We basically let them put all of the ornaments on and it is the best looking tree I've ever seen!

For now, all is quiet in the Johnson house and I am content to keep it that way for as long as possible!

Only 20 more sleeps until Santa comes and only 22 more sleeps until my baby turns 4!

We have a busy and fun month ahead!

Happy, Healthy Holidays to All!

Kelly

Tuesday, November 16, 2004 9:08 PM CST

DAY 1,187

It still amazes me how inadequate our health care system is! For something as simple as a lab draw, you wouldn't think it would take a rocket scientist to do it right ~ but evidently it does!!!!!!!!!!!!!!

After our experience last month at the lab, Bailey's WONDERFUL case manager found us a lab that we thought was going to work! She spent A LOT of time making sure that the entire scenario was understood and tried to foresee any possible mishaps ~ except one! Bailey's last name has always been, and will always be, Johnson NOT Anderson!

The labs that are run are ROUTINE labs (cbc, electrolytes, chemistries, cholesteral, triglycerides, etc., etc.). MOST labs use a butterfly on someone Bailey's age ~ except the lab at our local hospital who last month told me NO ONE uses butterflies anymore! It is fully understood that I need SAME - DAY results in order to start his medication (actually I did allow an extra day because, for some strange reason, I don't trust anyone!).

So all seemed to go smoothly today ~ a butterfly was used, I was told we would get same-day results, etc., etc. until 4:00 this afternoon - NO RESULTS!

So after a couple of phone calls, I am originally told it is because they weren't ordered STAT! I guess my gazillion times of "I NEED THESE RESULTS TODAY" is jibberish to phlebotomists! I then get Bailey's case manager through our insurance involved, who spends 45 minutes starting at 4:45 trying to figure things out only to finally come to the conclusion that the labs were actually run stat and faxed to SF, but not to me, but they were faxed for a mysterious patient by the name Bailey Anderson! Who's that?

I thought one of the first things that was supposed to be done was cross-referencing labels, orders, etc., etc. to check for any inaccuracies ~ well not at Labcorp!

Anyway, to make a long story long...I finally got Bailey's lab results and they are pretty impressive - that is if they are accurate. Considering CBC's should be run within a couple of hours and it was at least 4 before they were run (I wonder how long it would take to get them run if they weren't "stat" labs?). His platelets are

243,000!

He hadn't hit 200,000 before now! It will be interesting to see next months labs at UCSF to compare!

He did, however, wake up last night with a killer earache! I was going to try to get him in to the doctor this afternoon anyway because his cough is still nasty, but decided against waiting until the afternoon after last night and got him in this morning and put on a z-pack! Hopefully within a couple of days he should be feeling better.

Other than that....not a whole lot else is new around here (besides my 10,000 new grey hairs after this afternoon!)

Love to all,

Kelly

Monday, November 8, 2004 8:55 PM CST

DAY 1,179

The boys both did great at their hockey lessons last week! They are going skating again tomorrow and it will be neat to see the improvement in Cameron by his next lesson! He did pretty darn good considering it had been almost 2 months!

His finger still looks nasty, but doesn't bother him - which I would prefer over it looking fine but bothering him!

We have Bailey's first parent-teacher conference next week! We pretty much know how he is doing because one of us is there every Tuesday to help, but it will be neat to see what his teacher has to say! It is amazing the differences I see in him in such a short time!

We took the boys 4-wheeling this weekend and it was a lot of fun! It has rained/snowed quite a bit so there was no dust and Bailey is really doing good on his little dirt bike! He still has training wheels because he is not tall enough to stand on his bike.

Other than that, it is just the usual day-to-day stuff around here!

Until next time...

Kelly

Tuesday, November 2, 2004 7:24 PM CST

DAY 1,173

Okay, I promised more updates but things seem to NEVER slow down around here!

All is well! The boys had a GREAT halloween! I hope to have pictures soon! We had 107 trick-or-treaters! I LOVE seeing all the little guys!

Cameron gets to start hockey lessons this week! He will have his lesson and then Bailey will be taking two lessons that are right after Cam's!

Bailey also got to go out on the ice with the Reno Tahoe Freeze on Saturday night! His buddy Jason from the ice rink asked him a LONG time ago to be their mascot and Bailey was in hog heaven! He got to go into the locker room and come out with the guys and warm up with them a little bit!

The Freeze lost their first game Friday night, but won when their faithful mascot was there! Hopefully Bailey will continue to bring them good luck!

Other than that, it has just been the usual day-to-day hectic life! Not that I'm complaining! It is such a joy to see Bailey in kindergarten and Cameron in preschool! They both love it soooooooooooo much!

We are looking forward to turkey day that will be spent with LOTS of wonderful family that we are all very thankful for!

Kelly

Thursday, October 21, 2004 11:27 AM CDT

DAY +1,161

Bailey did absolutely AWESOME during scans yesterday! His MIBG was pretty long as they did a more specialized one that gives them a 360 degree view. Then he did good for his cat scan also.

We then met with Dr. Matthay to get the results and we know we need to be worried when she doesn't just walk right in and say everythings fine!

His VMA is under 2, his MIBG is negative, BUT his cat scan showed something new on his left kidney. This prompted an immediate appointment with ultrasound.

After ultrasound and meeting with the chief radiologist (only a resident had read the CT), it was confirmed that the new spot was a cyst NOT a solid mass! Although this is better than it could be, we are not sure what this is! Dr. Matthay didn't seem to be too concerned, but we are going to follow it every 2 months for right now. It is too small to do anything else but watch right now. It is less than 1/2 a centimeter and waaaaay to small to do a needle biospsy or anything else.

So for now we hurry up and wait!

Bailey also ended up with pneumonia in his left lung. He is doing much better now and hopefully should be back to feeling good real soon! The hives are gone after 5 days of steroids and LOTS of antihistamines (sp?).

My computer acting funny so I'm going to go before I lose this update.

Kelly

Wednesday, October 13, 2004 8:57 PM CDT

Day 1,153

OKAY, SO AFTER I ADDED THIS LAST NIGHT, I ENDED UP WITH BAILEY IN THE EMERGENCY ROOM WITH A BAAAAAAAAD CASE OF HIVES AND NO IDEA WHERE THEY CAME FROM (NO NEW FOOD, CLOTHES, LAUNDRY DETERGENT, ETC., ETC.) HE HAD A PRETTY GOOD NIGHTS SLEEP, BUT THIS MORNING (10/14)THE HIVES ARE WORSE THAN EVER! NEVER A DULL MOMENT AROUND HERE! I WILL BE TAKING HIM WITH ME TO THE DOCTOR'S APPOINTMENT I ALREADY HAD FOR CAMERON AND THEY BOTH ARE GOING TO MISS SCHOOL!

Wow, it sure has been a LONG time since I have updated! We have been pretty busy!

This whole kindergarten, preschool, hockey practice, broken fingers, sick kids, etc., etc., etc. has kept me a little preoccupied.

Bailey's scans were not today because UCSF could not get the isotope for the MIBG scan from Canada because Monday was Canada's Thanksgiving. This meant that the isotope would not be there on Tuesday for injection for scans on Wednesday.

UCSF just figured this out - well actually they figured it out 5 days before scan time - GENIUSES!

Anway, everything is on for next week, so keep the prayers a rolling!

Cameron's finger is doing good! We took his splint off today - it has already been a month!

Bailey absolutely LOVES school! The picture above is his kindergarten school picture! Pretty hubba hubba if you ask me! He picked out the background and his shirt all by himself! His uncle Bruce would be proud!

He has lost two teeth now. Well, actually, he has eaten two teeth now! Someday the tooth fairy might actually get to see a real tooth!

My mom, grandma and I took the boys to see Sesame Street Live a couple of weeks ago - Cameron LOVED it and Bailey has just about outgrown Sesame Street, but we all had a great time! 4 generations - how cool!

The kids both ended up with food poisoning last Thursday and DESTROYED our lazy boy chairs! We are going with leather! Ronnie also swears he is going to cement our floor, put a drain in the middle and hang a hose on the wall! NOT A BAD IDEA!!!!!!!!!!!!!

They got over that pretty quickly only for Cameron to end up with an ear infection Friday afternoon, so off to urgent care we went. The antibiotic they put him on sucks so we are off to the doctor again tomorrow to try something else!

Bailey is still LOVING hockey! He has become quite the skater!

Anyway, I truly intend to try to be more frequent with updates! I guess my body just needs to adjust to less and less and less and less sleep!

In any case, I will update next week with scan results!

GO BAILEY GO BAILEY GO BAILEY GO BAILEY!

Love and Prayers,

Kelly

Wednesday, October 13, 2004 8:57 PM CDT

Day +1,153

Wow, it sure has been a LONG time since I have updated! We have been pretty busy!

This whole kindergarten, preschool, hockey practice, broken fingers, sick kids, etc., etc., etc. has kept me a little preoccupied.

Bailey's scans were not today because UCSF could not get the isotope for the MIBG scan from Canada because Monday was Canada's Thanksgiving. This meant that the isotope would not be there on Tuesday for injection for scans on Wednesday.

UCSF just figured this out - well actually they figured it out 5 days before scan time - GENIUSES!

Anway, everything is on for next week, so keep the prayers a rolling!

Cameron's finger is doing good! We took his splint off today - it has already been a month!

Bailey absolutely LOVES school! The picture above is his kindergarten school picture! Pretty hubba hubba if you ask me! He picked out the background and his shirt all by himself! His uncle Bruce would be proud!

He has lost two teeth now. Well, actually, he has eaten two teeth now! Someday the tooth fairy might actually get to see a real tooth!

My mom, grandma and I took the boys to see Sesame Street Live a couple of weeks ago - Cameron LOVED it and Bailey has just about outgrown Sesame Street, but we all had a great time! 4 generations - how cool!

The kids both ended up with food poisoning last Thursday and DESTROYED our lazy boy chairs! We are going with leather! Ronnie also swears he is going to cement our floor, put a drain in the middle and hang a hose on the wall! NOT A BAD IDEA!!!!!!!!!!!!!

They got over that pretty quickly only for Cameron to end up with an ear infection Friday afternoon, so off to urgent care we went. The antibiotic they put him on sucks so we are off to the doctor again tomorrow to try something else!

Bailey is still LOVING hockey! He has become quite the skater!

Anyway, I truly intend to try to be more frequent with updates! I guess my body just needs to adjust to less and less and less and less sleep!

In any case, I will update next week with scan results!

GO BAILEY GO BAILEY GO BAILEY GO BAILEY!

Love and Prayers,

Kelly

Monday, September 27, 2004 9:27 PM CDT

DAY +1,137

The Relay was AWESOME - cold but AWESOME!

A little over $47,000.00 was raised and our team contributed almost $3,600.00 of that!

I think just about everyone on our team ended up with a cold after that night, but it was still well worth it!

I took Cameron to the orthopedist and he has to remain in his splint for about another 2.5 weeks. Then, if he is still having any pain, its back to the orthopedist to see what they need to do! We are hopeful that it will have healed properly on its own!

Bailey continues to LOVE his hockey lessons and Cameron can't wait to get back out on the ice - time will tell!

We have just been keeping busy with school and hockey!

Bailey scans are scheduled for October 13, so please start those prayers for another clean round and another successful attempt at no sedation!

Bailey will finish another round of craputane this Wednesday and this round has been pretty smooth, besides the usual!

Thanks for checking in!

I will try to change the pictures soon!

Kelly

Friday, September 17, 2004 10:49 AM CDT

Day 1,127

Okay…where to begin…

Bailey lost his first tooth yesterday! Actually, Bailey ate his first tooth yesterday! He was sooooo upset last night that he didn’t have a tooth to put under his pillow, so we had to write a note to the tooth fairy! She still came!


On another note, we spent 4 hours in the emergency room yesterday with Cameron! I was just trying to get him dressed for his hockey lesson when he got his finger slammed in between two benches! His friend, Jason (who is probably older than me) was screwing around with him and he ended up slamming his finger in between two benches. It did a number on his finger too! He has about a ½ inch incision on the tip of his finger, his nail is completely black and blue (he may have to have a hole drilled in his nail to relieve the pressure) and the tip of his finger bone broke right off and slit right down the middle!

Needless to say, he didn’t get to play hockey yesterday and he was MAD! We will be taking him to an orthopedist within a week and hopefully, because he is so young, things will heal quickly and he will be able to get back out on the ice!

So for now, we are going to try to focus our time on the Relay for Life that is tomorrow night and hope for no more mishaps!

Bailey’s Hope will be walking all night tomorrow night!

Kelly

Thursday, September 9, 2004 9:08 PM CDT

DAY +119

Sorry it has been so long without an update! Our computer wasn't feeling well and I think we may have it back on track!

Anyway, all is great here! The boys both LOVE school and they both started HOCKEY LESSONS tonight! Cameron already has a shiner! First time on skates - a true hockey player!

Bailey will be scheduled for scans again next month, so now is the time the nerves start setting in!

Other than that, we are just all adjusting to school life! We sure have busy mornings around here!

Love to all,

Kelly

Saturday, August 28, 2004 11:20 AM CDT

DAY 1,107

PLEASE GO TO INNISBROOK.COM AND SUPPORT A FUNDRAISER FOR BAILEY'S SCHOOL ~ AND FOR BAILEY!

UNDER SCHOOL NUMBER ENTER = 118322

THEN AFTER YOU SELECT EVERYTHING YOU WANT TO ORDER, AT CHECKOUT IT WILL ASK YOU FOR THE STUDENT'S FIRST INITIAL AND LAST NAME = B JOHNSON

HE IS IN KINDERGARTEN.

THIS WAY HE WILL GET CREDIT AND *PRIZES*

THANKS

Sorry it has been so long! We have been quite busy!

Bailey is absolutely LOVING school! He can't wait to get up and get on the bus every morning! He has done wonderful and it is amazing to see the changes in him already in just a little over 2 weeks! His bear has been green every day so far (Green=good, Yellow=watch out, Red=you're in big trouble!).

We have already had a chicken pox scare as a little boy in his class came down with them on Tuesday. We are keeping a close eye on him and hoping he dodges this bullet!

He is excited to be starting hockey lessons again after labor day and Cameron is going to be taking lessons too!

Cameron starts pre-school this coming Thursday and he can't wait! I think he will love it!

Other than that, all is well here!

Love,

Kelly

Tuesday, August 17, 2004 10:56 AM CDT

HAPPY BIRTHDAY BABY! TODAY MARKS 3 YEARS SINCE YOUR RENEWED CHANCE AT LIFE!

I COULDN’T BE HAPPIER THIS MORNING THAN TO SEE YOU GET ON THAT SCHOOL BUS AND HEAD OFF TO KINDERGARTEN!

3 YEARS AGO TODAY AT ABOUT 10:00 A.M., BAILEY RECEIVED HIS LIFE-SAVING STEM CELLS BACK! BOY, DO I REMEMER THAT DAY! THE SMELL WAS HORRIBLE! IT MADE BAILEY DEATHLY SICK (AND MOM AND DAD WEREN’T FAR BEHIND)! 8/17/01 WAS THE DAY THAT MARKED THE FIRST DAY OF MY PRECIOUS BABY’S NEW LIFE!

HE HAS BATTLED SO MUCH AND HE CONTINUES TO WIN EACH BATTLE!

FIGHT ON BAILEY!

Love,

Mom

Wednesday, August 11, 2004 2:13 PM CDT

Day 1,084

Bailey's first day of school went great! He has a really neat classroom and a great teacher! The picture above is of him and Mrs. Sullivan.

Will update more later!

Kelly

Monday, August 9, 2004 2:41 PM CDT

DAY +1,082

Three years ago today, Bailey was admitted for his bone marrow transplant! The picture above is of him on August 7 at Golden Gate Park.

Three years later, we are getting him ready to start Kindergarten!!!!!!!!!!!!!!!!!!!!!!!!!!! He starts in 2 days!!!!!

A lot has sure happened in the past three years and we are thankful for every moment we have had with him!

Come Wednesday, I will have a full photo album of our precious angel heading into his first day of school!!!!

I know it is a big day for all parents, but nothing compared to how special it is for us to see him do this!

Then next Tuesday he will celebrate his 3rd transplant birthday! I wonder if his teacher will let us have a little party ~ he would get two each year!

Watch for new pictures on Wednesday! WE ARE SOOOOOOOOOOOOOO EXCITED!

Kelly

Saturday, July 31, 2004 0:25 AM CDT

DAY +1,073

We are on our way to Santa Cruz for days of fun! The boardwalk, the aquarium, the trains....then off to Manteca waterslides.

Will update more when we return!

Kelly

Wednesday, July 21, 2004 5:43 PM CDT

DAY 1,063

OH YEAH BABY!!!!!!!!!!!!!

Not only were Bailey's scans clean....HE DID IT WITHOUT SEDATION!!!!!!!!!!!!!!!! He was such a stud the last two days with two IV starts and having to lay still for a VERY long time!

We are so proud of him!

He will start Round 7 of craputane tomorrow - we are hoping things continue to go smoothly!

I will update more when we get home tomorrow!

Oh yeah, his VMA was 7!!!!!

Until then....GO BAILEY, GO BAILEY, GO BAILEY, GO BAILEY!

Kelly

Saturday, July 17, 2004 9:20 PM CDT

DAY +1,059

We're back from our camping trip. Well actually, we are as far as the Bay Area as Bailey has his scans this week!

Camping was awesome! I will try to post pictures soon!

Even better......Haley's surgery was a HUGE success and she is already home after having major brain surgery on Wednesday! I got to talk to her a little while ago and she sounded great! GO HALEY! She got some really good news too! Stop by her site! www.caringbridge.org/nv/haley

Kelly

Friday, July 9, 2004 10:42 AM CDT

DAY +1,051

Bailey finished his 6th round of craputane on Wednesday!!!!! We are so excited that he is going to be off for our next big adventure! He did pretty good this round and we finally got him up to the full dose for the last 6 days!

On Wednesday I also donated blood for our buddy Haley who is having brain surgery next Wednesday! She will be having her surgery at Stanford. Please keep her and her family in your prayers! Her website is at the bottom of Bailey's page!

Anyway, we are off on Saturday for a week at Collins Lake! www.collinslake.com

It should be a lot of fun! Then we are going straight from there to the Bay Area for Bailey's next round of scans! Please keep Bailey at the top of your prayer list that this next round looks just as good, if not better, than the last! He is feeling and looking so good right now!

I will update when we return from the lake. In the meantime, lots and lots and lots of prayers for Bailey and Haley!

Kelly

Friday, July 2, 2004 11:42 AM CDT

DAY +1,044

Sorry it has been sooooo long! We had the best time at the waterslides! Cameron was a BIG CHICKEN at first, but ended up loving all the little slides! We had perfect weather and besides me being eaten alive by mosquitos, it was great!

Bailey got to go skating Tuesday night with Papa! Well, Papa was on the ice anyway! There ended up being about 15 people and they had a pick-up game. They were really pretty good about including Bailey considering they were all REALLY good skaters and hockey players. Bailey got to do a few face-offs at center ice after a goal was scored and the rest of the time he did really well with all of them around him. He got A LOT of skating in, which is great!

We have been experimenting with his craputane this round to try and find a dose he can tolerate without severe headaches. We started him at a lower dose and have slowly worked up. He had a headache one day, but it didn't seem to be all that bad. Today I am hoping to have him at his full dose. It seems to be just the first few days when his body trys to adjust to the medication. So we are trying to balance giving him the highest dose possible without the possibility of a severe problem (increased intercranial pressure - pseudo tumor cerebrii).

Anyway, we are hoping to get to see some fireworks this weekend, but it gets SOOOOOOOOOOOOOOOOOO CRAZY around here, we will have to see! Dad works the 4th and 5th and I'm not getting in that mess all by myself!

HAPPY 4TH!

Kelly

Wednesday, June 23, 2004 9:19 PM CDT

DAY 1,035

We're off to the waterslides tomorrow! The boys are really excited!

We got caught in the trailer this afternoon when a thunderstorm hit us hard for a little while!

Well, I'm off to pack some more! Will post pictures and news when we return!

Kelly

Sunday, June 20, 2004 11:02 AM CDT

DAY 1,032

H
A
P
P
Y

F
A
T
H
E
R
'
S

D
A
Y

!

!

!

Hope all the fathers out there have a Happy Father's Day! I know my hubby and dad sure deserve it!

Bailey and Cameron are excited to have two little boys move in two doors down on Thursday! They are 5 and 9 and just moved here from Fairfield. It is going to be great for them to have more kids in the neighborhood to play with. Logan and Garrett's parents also seem very nice!

Anyway, off to prepare for Father's Day festivities!

Kelly

Tuesday, June 15, 2004 9:47 AM CDT

DAY 1,027

Sorry it has been so long! We've been busy! We took the boys camping this weekend and they had a blast! Bailey is looking forward to his 7th hockey lesson Thursday. I video taped last weeks lesson and it is amazing to see how well he skates! He's a natural!

We've got a lot of fun trips coming up, starting with a 4 day trip to the Manteca waterslides next week!

Kelly

Saturday, June 5

DAY 1,017

TODAY, JUNE 5, 2004, IS THE WORLD CANCER PRAYER DAY! GO TO WWW.CANCERPRAYERDAY.ORG AND PRAY FOR ALL THOSE BATTLING THIS HORRIBLE DISEASE! EVERY DAY SHOULD BE CANCER PRAYER DAY!

Bailey was in HOG HEAVEN at Thursday's hockey lesson! Not only did he do AWESOME at his lesson again - he got to PLAY HOCKEY! He talked his coach into getting a net on the ice and some pucks. Next thing you know, all the hockey classes were out there dividing everyone up and playing a game!

BAILEY SCORED THE FIRST GOAL!!!!!!!!!!!!!!!!!!!!!!

It is amazing what a stick and a puck have done to his skating! He totally forgets he's on the ice and just goes like a bandit!

His poor face is pretty beat up already from this round of craputane, but 5 days to go!

All of Jake's tests came back clean! Drop by his site - he's a real cutie!

www.caringbridge.org/co/jacobtylercohen

Kelly

Friday, May 28, 2004 10:03 AM CDT

DAY 1,009

Joe Sakic - WATCH OUT! Your job may be on the block!

Bailey was absolutely AMAZING at his hockey lesson last night! He is actually SKATING instead of walking on the ice! He also learned how to get up all by himself when he falls!

A lot of his improvement had to do with the coach he had last night! Jason is AWESOME. But most of it had to do with the fact that he was having fun and trying really hard!

He also started round 5 of craputane yesterday. Yesterday went fine, but I just found out he got really sick this morning. I HATE this crap!

Let's just hope this is a one time deal! He wants to get back out on the ice NOW!

Kelly

Thursday, May 20, 2004 9:38 AM CDT

DAY 1001

Wow! 1,001 days! That's a long time when you are only 5! Bailey is doing just awesome! He has his third hockey lesson tonight and can't wait to show off for Nonny, Papa, Grandma, Nanny & Grandpa! I just hope he pays attention to his lesson and doesn't try to show off!

Well, since I'm at work, I guess I should get to work, just wanted to post that 1,000 day mark!

Something to be proud of my little dude!

Love,

Kelly

Sunday, May 16, 2004 7:12 PM CDT

DAY 997

Wow! In 3 days it will be 1,000 days since Bailey had his bone marrow transplant! A LOT has happened since that day. Our little dude has had A LOT of rough days since that day, but he stands today smiling and happier than ever!

He has every right to be the moodiest little snot around, and yet he brings SO much joy to our lives!

We were hoping to get him out on the ice again today, but the Sharks were on at 1:00 and open skate is from 1:00 to 5:00, so that was pretty much out of the picture! We were glad to see the Sharks play some real hockey again today and beat the Flames again! It's back at the Shark Tank tomorrow night - the kids are MAD that we aren't going to be there!

Bailey will have his third lesson on Thursday and if it proves to be anything like last week, he will be skating laps around his instructor! I couldn't believe the improvement he made this last Thursday during his lesson! By the end of the lesson him and the other little boy in his class were having races across the ice! Granted they don't quite have the form of Joe Sakic or Mike Ricci, it was just AWESOME to see him in his glory on the ice!

He also finished his 4th round of craputane on Wednesday and we are really working on getting his poor skin back in shape! This round took a real beating on his lips and legs. I couldn't imagine having the cracks around my mouth that he has and yet it doesn't seem to really bother him!

Anyway, check out the link below to Haley's website. She now has a caringbridge site. Please post to her guestbook and let her know you stopped by on Bailey's behalf. She is a cute little girl that has been through a lot too!

Love,

Kelly

Tuesday, May 11, 2004 9:28 PM CDT

DAY +992

Hope everyone had a great Mother's Day! I KNOW I DID!

We were camping and we had a great time! We could have done without the winds that almost knocked our trailer over on Sunday night, but other than that - we had a blast!

The new pictures are of the boys in their wet suits having a great time! We thought these wet suits would be an easy way to cover more body parts and expose as little as possible to the sun!

As Bailey finishes Round 4 of craputane tomorrow - we were in need of major cover ups!

Sorry I haven't posted in a while! We've been having fun! Bailey has his second hockey lesson on Thursday and is loving it! He had his first lesson and then Daddy took him to practice yesterday!

HE SKATED THE ENTIRE LENGTH OF THE ICE BY HIMSELF!!!!!

GO BAILEY! GO BAILEY! GO BAILEY! GO BAILEY!

He and his brotherare my shining stars!

Love,

Kelly

Saturday, May 1, 2004 8:07 PM CDT

DAY 982

CHECK OUT BAILEY ON THE ICE! HE STARTS HOCKEY LESSONS THURSDAY!

CHECK OUT THE NEW PICTURES OF THE KIDS' PLAYROOM!

The following song was just sent to me by e-mail from another family whose son has battled neuroblastoma! Bailey and Jake are both fighters and the lyrics to this song fit them, along with many other children, to a T! Thanks Dave!!!!!!!!!!!!!!!

When I look at you
by David Kersh

I’ve always tried to be the kind of man
That a child can look up to
But I find myself standin’ here
Lookin’ up to you
You’re like an angel sleepin’
And I don’t want to wake you up
But with every breath you’re teachin’ me
What it means to not give up

When I look at you
I see courage I see faith
I see all the strength it takes
To make it through another day

When I look at you
I see you facing down your fears
I see you smilin’ through your tears
Yeah I see the greatest hero in this room
When I look at you

I hear your sweet voice callin’ to me
I feel you reach out for my hand
The next few minutes we spend talkin’
About things no one understands
Then you try to bring me comfort
And tell me it will be okay
And once again you do somethin’
Just so my heart doesn’t break

When I look at you
I see courage I see faith
I see all the strength it takes
To make it through another day

When I look at you
I see you facin’ down your fears
I see you laughing through your tears
Yeah I see the greatest hero in this room
When I look at you

When I look at you!!!!!

Wednesday, April 28, 2004 9:37 PM CDT

DAY +978

GO BAILEY! GO BAILEY! GO BAILEY! GO BAILEY!

CLEAN SCANS!!!!!

Will update more later! We're watching the hockey game! Just wanted to let you all know that all is well!

Kelly

Tuesday, April 27, 2004 7:50 PM CDT

DAY +977

So tomorrow is the big day! Bailey did AWESOME today with his injection and scans are bright and early tomorrow morning!

We know, hope and pray that things will yet again be all clear! Our little angel has been through enough!

PLEASE keep Bailey high on your prayer list as tomorrow is a big day!

Kelly

Saturday, April 17, 2004 12:42 AM CDT

DAY +967

Sorry it has been so long! I didn't realize I hadn't updated in so long! Things are good though.

The boys had a great Easter and then we were off to Collins Lake for 4 nights of camping! We all had a great time in our new trailer and the boys had fun fishing!

Of course they fished for about 5 minutes at a time, but they liked it anyway.

We are home for a few days and then we are off for Bailey's next round of scans. I can't wait to get those behind us!

Anyway, I did put the new picture on the front page of the boys fishing. Will try to add more later!

Kelly

Tuesday, March 30, 2004 10:22 AM CST

DAY +949

So the dry skin has started, but other than that we can't complain so for in this third round of craputane!

The boys have had more energy than ever lately and have both felt great!

We've bot a busy couple of weeks ahead of us, including a 4-day camping trip in our new trailer! The boys are VERY excited!

I also just confirmed Bailey's scan schedule. He will be having MIBG and CT on 4/28! LET'S START THOSE PRAYERS! CLEAN SCANS, CLEAN SCANS, CLEAN SCANS!

If his labwork is any indicator, things should be awesome! I haven't seen his counts this good in FOREVER! His platelets are pushing 200,000 - I never thought he we get over 100,000 with all of his platelet problems!

Until next time.....

Kelly

Thursday, March 25, 2004 8:10 PM CST

DAY +944

Round 3, Day 1 - DONE!

I've decided to give Bailey a little motrin with each dose of accutane for the first few days of each round and see if we can keep the headaches at bay. It just seems to be the first couple of days and then he is fine. I guess it must be the adjustment to his system.

Anyway, he has been feeling great and eating like a HORSE! The other night for dinner he had 1 bowl macaroni and cheese, 1 piece of pizza, another bowl of macaroni and cheese, a bowl of honey nut cheerios, and an ice cream sandwich - all within about 45 minutes and no stomach ache!

I'm hoping he has put a little of his weight back on!

We got the best touch of Spring and now Winter is back! Daddy is at work tonight and they already have 5 inches of snow! They have had to chain up the fire engines, etc. and are plowing at the station! And just the other day I was in a tank top and shorts pulling weeds! THAT'S TAHOE FOR YA!

Anyway, just wanted to let you all know that everyone is feeling pretty good around here!

Kelly

Friday, March 19, 2004 11:09 AM CST

DAY +938

Bailey had an absolutely awesome birthday! He got more than he could imagine, and then some!

We then had a great time at the Sharks game and then off to LA for our new camping trailer!

I will try to post pictures of the trailer soon! The kids won't get out of it! Although with the way gas prices are going, the back yard may be the only place we use it this summer!

Bailey has one more week off from accutane, then round 3.

Kelly

Thursday, March 11, 2004 0:21 AM CST

DAY +929

HAPPY BIRTHDAY TO YOU
HAPPY BIRTHDAY TO YOU
HAPPY BIRTHDAY DEAR BAILEY
HAPPY BIRTHDAY TO YOU!!!!!!!!!

I can't believe our angel is 5 YEARS OLD! There were times we never thought we would see this day! How thankful we are to be having a hockey party for our precious angel!

There might be a few days in between postings as we will be gone after his birthday until next Tuesday.

Happy Birthday Buddy!

Love,

Mom

Wednesday, March 10, 2004 10:31 AM CST

DAY +928

HAPPY BIRTHDAY NONNY!!!!!!!!!

Bailey is getting really excited about the big 5 tomorrow! I can't believe my angel is 5 years old!

Today is his last dose of accutane for round 2!!!!!!!!!!!!!!!! What a birthday gift!

We have his party tomorrow, then off to the Bay Area for a Sharks game, then off to Riverside to pick up our new trailer!

Boy what a birthday!

Check back for B-day pictures coming soon!

Kelly

Sunday, March 7, 2004 7:31 PM CST

DAY +925

Sorry it has been so long! The boys have been doing much better and we have been busy!

Yesterday was the big 30 for me! It wasn't as bad as I thought it might be and I had a lot of fun! My wonderful husband surprised me and took me out of town, where 8 of our best friends showed up for a surprise dinner!

Now we are in the planning stage of Bailey's big 5th birthday this Thursday! His theme, as if anyone wouldn't know, is HOCKEY!

He is going to have a hockey cake, hockey plates and napkins, hockey this, hockey that, etc., etc. etc.

We also found him some cool hockey stuff for his birthday! Then we're off to San Jose to a Sharks game on Saturday!

This second round of accutane has really torn him up! Although the headaches are fewer and farther between, his skin is thrashed! He will be done Wednesday and hopefully his 2 weeks off we can get him back in shape!

Anyway, I really really really promise to try to post more often! I am going to take some pictures in the next few days of the boys' play room! It has turned out awesome! Check back for those!

Until then.....

Love,

Kelly

Friday, February 27, 2004 6:46 PM CST

DAY +916

So I spoke toooooo soon concerning Round 2 of Accutane! Bailey complained of a headache last night, which we solved with some motrin and getting him to fall asleep. He also complained this morning of a headache about an hour after his morning dose. It got so bad he puked.

All of this while I'm trying to get Cameron ready to go to the doctor because he has been puking for 4 days! I don't have enough buckets!

So I took Cameron to the doctor and he said the best we can do is to try and keep him hydrated - which I have been able to do so far. He did give me a prescription for nausea and when I went to pick it up at the pharmacy, the first thing the pharmacist said is "it may cause nausea"! I thought I was getting something to stop the nausea! I GIVE UP!

Anyway, Cameron seemed to be doing a little better until a little while ago when he christened a new area of carpet yet to be touched by puke!

I really think my husband's idea of a concrete floor with a drain in the middle and a hose on a reel on the wall would be a GREAT idea!

I'M SO SICK OF PUKE!

So for now I will try some motrin with Accutane to see if we can head off any headaches in hopes of a little less puke around here!

As for Cameron, this bug better get the #@$% out soon!

Kelly

Thursday, February 26, 2004 9:16 PM CST

DAY 915

DING, DING, DING - ROUND 2 BEGINS!

Bailey has started to feel much better and has taken his first two doses of his second round of Accutane without a problem!

Cameron, on the other hand, is not doing too well! He caught the stomach bug that Bailey had and has been puking for 3 days. Today he also decided to start a fever, so off to Dr. Gentner's again for the second time this week!

I hope we don't have to start back with the "standing appointments" in his office again like last November!

We have pulled Bailey out of pre-school in hopes to get everyone healthy again and get some weight back on Bailey.

He was down to 34 lbs. with his clothes and shoes on on Monday - NOT GOOD! Considering he will be 5 in two weeks, he is waaaaaay behind. But he has started to eat good again and we are hoping to put some of that weight back on! Between surgery and this stomach bug, he didn't have a chance!

We have been getting lots of snow - well not at our house, but just up the mountain - and we are hoping to let the kids be able to enjoy it if they get feeling better!

Hopefully my next update will find us all well!

Kelly and the boys

Monday, February 23, 2004 7:16 PM CST

DAY +912

Bailey is pretty under the weather! He got a nasty cold the second day he went back to pre-school and just hasn't been able to kick it.

He woke up Saturday with a nasty cough and ended up getting sick and having diarrhea all day. Since then he has been very listless and hasn't eaten much of anything.

He is down to 34 pounds. But I took him to the doctor today and they put him on another Z-pack and hopefully that will help him feel better soon. I know its hard to eat when you don't feel good, but he can't afford to lose any more weight.

Anyway, I should have some fun pictures to post tomorrow! Check back and I promise to try to do more frequent updates!

Kelly

Sunday, February 15, 2004 8:55 PM CST

DAY +904

Bailey sure has enjoyed no pills for the past few days. I just hope when we have to start round two, he doesn't put up a fight!

We are trying to play catch-up with his skin as he is really starting to peel all over! We have another week and a half and hope to have him in pretty good shape before round 2.

Also, since he is back in pre-school, we started the runny nose thing again! Bailey, Cameron and I all have it! That 1.5 months without school sure proved what germ factories schools really are!

Anyway, we are just life as usual around here and Bailey is getting excited about his 5th birthday! I found a place that can make an NHL cake with whatever teams I want, so it should be fun!

Keep up the prayers! Our little angel is feeling and looking great besides flakey skin - which is a good sign that the accutane is processing through his body!

Kelly

Wednesday, February 11, 2004 6:50 PM CST

DAY +900

Round one - DONE

This first round of accutane started out pretty shakey, but has gone along smoothly since and after tonights dose - two weeks off!!!!!

Bailey has been back at preschool for two weeks now and is having a great time! He has a Valentines party at school tomorrow! Should be fun!

Today was a pretty neat day! Bailey is going to be in a bone marrow transplant survivor calendar for 2005 and we went and had his pictures taken today. We took him up the tram at Heavenly Valley and took some AWESOME pictures of him sledding with Lake Tahoe in the background! I can't wait to see them!

Anyway, sorry for the lapse in updates, but things have been going good and Bailey is feeling great - besides the dry, cracked skin.

Will update again soon!

Kelly

Monday, February 2, 2004 8:39 PM CST

DAY +891

The accutane has gone well since the first day. It has been a little bit of a challenge this time getting him to swallow the capsules, but he does it in time with fruit snacks. I think he has his dad's phobia of swallowing pills!

We have kept him very lubed and so far his skin looks great! He is going to go back to pre-school tomorrow for the first time since the middle of December! He is excited and we are hoping it all goes well! I'm just worried that the accutane may set him off or if he were to get bumped into or knocked over. His stomach is healing well, but is still definitely in the healing stages. All of those stomach muscles are going to take a LONG time to be completely healed.

Also, the playground is total sun exposure, so we will have to figure something out for playtime.

Anyway, other than that, he was upset that the Florida (Carolina) Panthers lost the Superbowl. He likes the Florida Panthers hockey team and when we tried to explain that the football team was from Carolina, he didn't like that and refuses to call them anything other than the Florida Panthers!

We are going to Reno on Wednesday to have our picture taken with the President of Angel Kiss Foundation - a foundation that helps support family's with major illnesses. They are going to be having a fundraiser sometime in February and we are going to take a picture for the newspaper with the new president of the foundation to help support the fundraiser. The new president is Donna Breen. Her son had neuroblastoma many years ago and she wrote a book. She is a wonderful lady and we are really excited.

So, until our next adventure.....

Kelly

Friday, January 30, 2004 10:45 AM CST

DAY +888

So day one of accutane did not go so well! Bailey ended up getting a really bad headache and got sick a total of 4 times over about 6 hours! Not the way we wanted this to start!

I think it was probably just a little virus because the day before, Cameron wasn't himself, slept most of the day and didn't eat well - at least I'm hoping!

One of the possible side effects of accutane is intercranial pressure (swelling), which causes headaches, which causes vomiting, and so on and so on! We had a problem with this the last time Bailey was on accutane and thought we were in for a long three months!

Bailey had a good nights sleep, woke up asking for breakfast and has already taken his morning dose of accutane. We all have our fingers crossed that it was a little bug and NOT the accutane. I found it hard to believe that just one dose of accutane could cause such problems, but with Bailey - YOU NEVER KNOW!

So anyway we are going to take it easy today, although I do have to take him to the doctor, then get to the grocery store! I'm just hoping he's past the puking as I don't want to christen my new car with puke!

Keep the prayers a rollin'!

Kelly

Monday, January 26, 2004 11:28 PM CST

DAY +884

After a LONG day of waiting, I finally got to talk with Dr. Matthay. I was able to find out that less than 5% of the mass that was removed was active. It took a lot of slicing and a lot of looking before they saw anything.

So after her discussion with the docs in NY, we are going to do 3 rounds of accutane, scan, and go from there.

So I am now in the process of trying to work with our new insurance and getting stat labs drawn so he can start his first round hopefully on Monday. The problem is that "stat" to a lot of labs around here means letting it sit for a good 4 hours, then shipping it from Carson City to Reno to a lab where they can actually run the tests. NOT STAT TO ME! Also, I am not going to let just anyone draw the labs! I want someone who works with peds patients!

So we are all comfortable with this plan and I did ask Dr. Matthay if this is what we would probably be doing even if the final pathology all came back negative and she said yes. Since we have had to instances now, we all feel we need to do something, just not to much, but hopefully enough.

Bailey will have a long three months ahead of him with the mood swings and extremely dry, cracked, peeling skin, but I managed to keep most, if not all of that under control last time and am prepared to do it again!

Our little buddy is going to beat the odds yet again and prove that once again he is our miracle baby!

Thanks for the continued prayers!

Kelly

Friday, January 23, 2004 7:02 PM CST

DAY +881

WE'RE HOME!!!!!!!!!!!!!!!!!!!!!!!!!!!

We got the final pathology yesterday and were very disappointed to find out that the entire tumor was not negative. There was "some" active cancer cells. We will find out more on Monday after Dr. Matthay has had the opportunity to discuss the situation with Dr. LaQuaglia and Dr. Cheung and Dr. Kushner in NY.

Bailey will probably have to go back on the accutane, but we will know more on Monday.

For now, continue the prayers.

Kelly

Wednesday, January 21, 2004 7:13 PM CST

DAY +879

I am writing this journal entry from Bailey's cousin's house! WE GOT OUT!!!!!!!!!!!!!!!!!!

Bailey is still extremely fragile, but is doing much better than yesterday. We got his pain under control and he had a good nights rest. So we will stay close for a few days and then go HOME!

Thanks for the continued prayers.

Kelly

Tuesday, January 20, 2004 11:56 AM CST

TWO STEPS FORWARD, ONE STEP BACK. BAILEY HAS HAD A PRETTY GOOD DAY, BUT WE HAVE BEEN HAVING TO WORK AT PAIN CONTROL. HE WILL NOT TAKE SUSPENSION, SO WE TRIED TYLENOL W/ CODEINE IN PILL FORM. IT WENT OKAY, BUT THE DOSAGE WASN'T QUITE ENOUGH SO IT MAY TAKE A LITTLE LONGER TO GET THINGS FIGURED OUT. HE ALSO DIDN'T PEE FOR A LONG TIME SO THEY HOOKED HIM BACK UP TO THE IV FOR A BOLUS. WE THREATENED THE FOLEY AND HE WENT RIGHT AWAY. SO WE WILL SEE IF WE ARE READY TO GET OUT OF HERE TOMORROW. WE ARE HOPING FOR A MORE RESTFUL NIGHT!

DAY 878

Yesterday proved to be a day of huge hurdles! Bailey not only got out of bed, but he walked the halls, sat up and played computer games, walked some more and finally we had to make him go back in bed so he wouldn't overdo!

This morning his epidural was turned off, his IV's were unhooked and now we are just waiting for the pain service to come remove his epidural. Then he will be completely unhooked from everything. He got is foley out yesterday afternoon because he was able to pee on his own. So now he is almost free of all tubes, etc.

The surgeons said possibly either later today or tomorrow for us to scoot on out of here. We will probably stick close by for a couple of days and then head home!

Thank you for the continued prayers!

Kelly

Monday, January 19, 2004 12:08 AM CST

DAY +877

Bailey had an AWESOME night! We got him out of bed around 8:30 to give him a clean bed and then we took him for a wagon ride. The first move proved to be challenging, but he did awesome and was much better after.

He ended up having a bowel movement, which is what we needed him to do to get things going as far as letting him try to eat and drink again. So today we are going to wean his epidural every two hours and then he can get rid of the foley (sp?). He is also allowed clear liquids (jello, soup broth, etc.) today and as long as that goes well, we will be able to move on to bigger and better things.

He has been asking for Subway since yesterday morning, so at least he has the urge to want to eat!

Anyway, just thought I would do a quick update because it seems like every time I do an update we have a huge breakthrough shortly after!

As I type this, we are watching the Colorado v. Sharks game (again)! I think I will know this game play by play before long!!!

AGAIN, PLEASE KEEP THE SMITH FAMILY IN YOUR PRAYERS. THEY ARE SUCH SPECIAL PEOPLE AND ARE ENDURING HORRIBLE TIMES!

Kelly

Sunday, January 18, 2004 6:18 PM CST

Day 876

Bailey is doing well. I will update below but first...

PLEASE ADD LISBETH, CHRIS AND NICK SMITH TO YOUR PRAYERS AS THEY LOST THEIR HUSBAND/DAD THIS PAST WEEK IN A HORRIBLE DROWNING ACCIDENT. THEIR FAMILY HAS BEEN SO WONDERFUL TO US AND NOW WE WISH THEM STRENGTH AND PEACE IN THE DAYS AHEAD AS I KNOW THEY WILL BE DIFFICULT ONES.

Bailey got his NG tube out last night which made a HUGE difference in his demeanor.

He had a pretty good night, except for all of the interruptions from staff.

He has been awake today since 6:15 this morning and is just now nodding off a little bit.

He has started to ask for food and water, although we are still not allowed to give him anything. We are hoping to be able to do some ice chips and clear liquids by tomorrow.

We have also started weaning his epidural, which has gone pretty well. We are going to slow the process down now until we are able to sit him up. I know this isn't going to be fun, but has to be done and should help to get things moving again.

We have elevated the bed, but he hasn't wanted to actually sit up by himself yet. I wouldn't either!

We got an AOL free trial disc, so I should be able to keep everyone posted during his hospital recovery.

We are going to get to see Cameron tomorrow and hope this will help to lift Bailey's spirits and get him motivated to get out of this joint!

Thanks for the continued support.

Kelly

PS - SOMETHING HAPPENED TO THE HOME PHOTO WHEN I TRIED TO UPDATE THE PAGE SO I WILL HAVE TO ADD IT BACK ON WHEN WE GET HOME!

Saturday, January 17, 2004 12:18 AM CST

DAY +875

Bailey had a pretty good night! He woke up for a little bit around 8:00 and watched Spongebob. Then he was off to sleep again until about 2:00 am, when he talked with me for a little bit.

His pain control seems to really be under control. The epidural is working wonders. The surgeons came in a little while ago and said that he can probably have his NG tube removed sometime today, which should help a little bit.

So now we just let him take his time recovering and know that it won't take him long to skate right out of these halls!

Dr. Farmer gave him a really cool bandage over his HUGE incision. He has two hockey sticks!

I don't know that I will be able to update tomorrow. We found a family resource center where we can access the internet, but they are closed on Sundays.

Please know how grateful we are for all of the prayers for our precious angel! He is doing as best as can be expected for what he had done yesterday and is on the path to feeling 100% again.

Ron & Kelly

Friday, January 16, 2004 6:32 PM CST

DAY +874 (I think)

WE GOT THE NEWS WE NEEDED! In just over 2 hours, the entire mass was removed and the frozen sections in pathology were all NEGATIVE!!!!!!!!!!!!!!!!!!!!!!!!!!!!

He is resting comfortably now and we are on 7Long, Room 731.

We still have to wait for final pathology which probably won't be until next Wednesday with the holiday weekend, but the surgeon didn't seem at all concerned with what she saw.

I'm not sure when I will be able to update again. I am using a computer in the teen room and we are hoping to figure something out with our laptop with some sort of dial up internet.

If not, no news is good news!

THANK YOU FOR ALL THE PRAYERS! THEY WORKED ONCE AGAIN!

Kelly

Thursday, January 15, 2004 7:33 PM CST

So the plan is on for tomorrow. The CT was completely unchanged and we feel it best to go in get this out now instead of waiting another couple of months and have to go through this later.

We will find out the news we need now and 2 months from now he will be feeling better, celebrating his 5th birthday and we will know our precious angel will be fine.

Please keep the prayers rolling!

Kelly

Wednesday, January 14, 2004 6:20 PM CST

DAY +872

So, so far hell week hasn't been too bad. Bailey's bone marrow aspiration went fine, aspirate is negative.

His VMA is still 9!!!!!!!!!!

His MIBG is negative!!!!!!!!!!!!!!

We don't know about the CT scan yet, but the plan is still on for Friday and I will update more when I know more.

The Zamboni was the most awesome experience. We met the guy who arranged everything before the game. Bailey got to go down and see the Sharks practice, Wayne Primeau gave him a puck. Then we went back to our seats until first intermission. We went down and got ready to go on the Zamboni. Bailey loved them and got right on. (SEE PICTURES). Then Bailey got to go back to Rob's office and he got not one, but two autographed REAL sticks for him and his brother.

He was on cloud nine all night, as were we to see him so happy. He is feeling better than ever and the past couple of days haven't put a damper on his spirits.

Thanks for the continued prayers.

Kelly

Sunday, February 11, 2004

JUST THOUGHT I WOULD LET YOU ALL KNOW THAT THE HEALING SERVICE WAS AMAZING AND THAT IT WAS WELL WORTH THE TRIP! WE FEEL IN OUR HEARTS THAT OUR PRECIOUS ANGEL IS GOING TO BE SPARED FROM THE WORST THIS WEEK AND THAT OUR PRAYERS AND ALL OF YOUR PRAYERS ARE GOING TO BE ANSWERED! OUR PRECIOUS ANGEL HAS A LOT STILL TO DO IN THIS WORLD AND A LOT OF PEOPLE TO TEACH HOCKEY!!!!!!! I LOVE YOU BAILEY! MOMMY!

DAY 867

So we're off today for one of the worst weeks of our life! Our precious has a lot ahead of him, but we still know that miracles can happen and will hope and pray for them.

I will try to keep this website updated as much as possible.

Here is a list of our plans for the next week...

Friday January 9, 2004 Drive to Bay Area
Saturday January 10, 2004 Drive to Paso Robles
Saturday January 10, 2004 Healing Service with
Father Pinto 7:30 pm
Monday January 12, 2004 Kelly to donate blood for
Bailey
Tuesday January 13, 2004 Meeting with radiation
oncologist 9:00 am
Tuesday January 13, 2004 Bone marrow aspiration and
biopsy 12:00 pm
Tuesday January 13, 2004 MIBG injection 2:00 pm
Tuesday January 13, 2004 SHARKS v. STARS 7:30 PM
Tuesday January 13, 2004 BAILEY ON THE ZAMBONI
Wednesday January 14, 2004 MIBG &CT scan 10:00 am
Wednesday January 14, 2004 Meeting with surgeon2:00 pm
Friday January 16, 2004 Surgery???? 9:00 am

So as you can see, we have a full week ahead of us and will be looking for miracles around any and every corner.

PLEASE KEEP BAILEY IN YOUR PRAYERS, as we know you will and thank you for all the prayers he has received so far!

Kelly

Monday, January 5, 2004 9:25 PM CST

DAY +863

With all we have ahead of us next week, we do have something really exciting thrown in the middle.

We were able to get Bailey a ride on the Zamboni at the San Jose Sharks game next Tuesday! I told Ronnie to call and try - all they could say is no! BUT THEY SAID YES!

His favorite part of hockey are the zambonis. Now he gets a real ride on one!

We are so excited for him and I will be sure to post pictures as soon as possible!

Keep those prayers coming! Miracles can happen!

Kelly

January 1, 2004

DAY 858

HAPPY NEW YEAR!

CHECK OUT THE NEW PICTURES!!!!!!!!!!1

We are all pretty tired, so this will be the short version for now. We didn't get home until 3:30 this morning.

Basically, we are very glad we went to New York and we got a lot of questions answered and also got a lot of good advice.

We have decided to stick with the plan in San Francisco because Dr. LaQuaglia would follow close to the same plan and we would much rather do it where we are more comfortable and closer to home!

So now Bailey is scheduled for scans 1/14 and surgery 1/16.

We are going to be deep in prayer for the next two weeks that our meeting with Father Pinto can bring us a miracle and this mass will be smaller on the scans on 1/14, which will mean no surgery on 1/16 and we will just watch it!

I know that that is asking for a miracle, but we can ask and hope and pray, but still know that we will more than likely have to put Bailey through a lot again to find out that our precious angel is fine!

This was a prayer sent to us for Christmas:

GENTLE JESUS, IN THE GOODNESS OF YOUR MERCY
BE EVER MINDFUL OF BAILEY AUSTIN JOHNSON AND,
ESPECIALLY IN THIS TIME OF GREAT NEED, GRANT HEALING OF MIND AND HEART AND REST FOR BOTH BODY AND SPIRIT.

LORD GOD, SOURCE OF ALL GRACE AND BLESSING, GRANT HEALING OF MIND AND HEART TO THOSE WE LOVE. LET YOUR GENTLE HEALING TOUCH REST ON THEM SO THAT THEY MAY SEE YOUR LOVING PRESENCE IN THEIR EVERYDAY LIVES. AND, IN HARMONY WITH YOUR WILL, GIVE THEM GREATER PEACE AND JOY OF HEART. THIS WE PRAY THROUGH JEASUS CHRIST OUR LORD. AMEN

Prayers,

Kelly

Monday, December 29, 2003 2:44 PM CST

DAY +856

We made it to New York! It was a very long day. We left our house at 6:30 a.m. pacific time and got to the Ronald McDonald House at 9:30 p.m. eastern time. In between was somewhat hectic.

Our plane from Reno left 40 minutes late and we only had a 45 minute layover in Phoenix. AND, OF COURSE, we were in row 22 of 23 rows and we landed at Gate B7, concourse 3, and our connection was at Gate A22 concourse 1. There was a little cart that fortunately got us to our connection as they were closing the doors. I didn't think our luggage would ever make it, but it did!

Then we had the cab ride of a lifetime from the airport to the Ronald McDonald House. This place is great! The bottom floor is amazing with all of the things to do for kids. There are dozens of video games, pinball machines, etc. Thousands of movies and all other kinds of things, including 15 high-speed internet computers.

We went down to Rockefeller Plaza to see the big Christmas tree and the ice rink, along with about 5 million other people! It actually wasn't much fun because you could get nowhere fast! We then walked to FAO Schwartz, which is closing, and that was another zoo. We ended up walking back to RMH and now Bailey is having a blast in the play room.

Rockefeller Plaza is at 51st & 5th Avenue. RMH is at 73rd and 1st, just to let you know where we walked today. We think we will be meeting with Dr. LaQuaglia at about 9:00 tomorrow morning and then we might just try to go to the airport and get on an earlier flight. If not, we will try to keep Bailey occupied for a long day in the airport - not much else to do.

Will update more upon our return.

Kelly

Saturday, December 27, 2003 6:01 PM CST

DAY +854

HAPPY BIRTHDAY CAMERON!

My littlest angel is 3 years old today! We are having 40 people for his party in just a little while! Then we are off to New York in the morning, so I will update upon our return!

Kelly

Tuesday, December 23, 2003 10:06 AM CST

CHECK OUT THE NEW PICTURES - I FIGURED I BETTER GET RID OF HALLOWEEN!

DAY 850

Things have really come together for our trip to New York! We leave Sunday, 12/28 at 9:35 and get home Wednesday, 12/31 at 1:15 am.

I AM ALSO VERY EXCITED ABOUT A HEALING SERVICE WE WILL BE TAKING BAILEY TO. Father Pinto came to see Bailey once before right after his relapse. He was "ORDERED" by Mother Teresa to come to Bailey's bedside at UCSF (which he almost NEVER does).

He is going to be in Paso Robles (yes, where the earthquake was yesterday) January 9-11. He is having a public healing service on January 10 which we are planning to attend. Right now he is in India, but upon his return we are going to try and contact him directly (which we do often) and see if he will meet with Bailey privately. If not, we would be more than thrilled with the public healing service.

You can find out more about him if you do a search for Father Santan Pinto.

He is an amazing man who has brought so much hope in the past for Bailey's future.

If I don't get back to update, please everyone have a MERRY CHRISTMAS and a HAPPY NEW YEAR!

I promise to update upon our return from New York!

Prayers,

Kelly

December 16, 2003 1:43 Pacific Time

DAY 843

This is just a quick update to let everyone know that we are confirmed for our appointment with Dr. LaQuaglia in New York on Tuesday, December 30. All of the travel arrangements are falling into place. In the meantime, please keep the prayers coming for my precious angel!

THE NIGHTMARE BEFORE CHRISTMAS

That is what I feel like is happening to us right now! My poor precious angel is going to have to go through a very major surgery just to get a biopsy.

I will try to give you all as many details as possible and will try to keep this site updated as we know more.

Right now we are in the process of setting an appointment up in New York to get a second opinion from a WORLD RENOUND surgeon. We have a tentative appointment set up for December 30 to meet with him in New York. I never thought my first trip to New York would be for this, but whatever it takes!

In the meantime, UCSF has scheduled another round of scans of January 14, with surgery set for January 16. Along with the surgery the radiation oncologists have been booked to do interoperative radiation (if needed and necessary). The plan at UCSF is to do a biopsy, send it to pathology for a frozen section result immediately, if there shows active tumor cells in the frozen section, Bailey will receive interoperative radiation while in surgery. They will also try to remove as much as possible.

The problem is that it is in a very dangerous area surrounded by all kinds of very important arteries, veins and blood vessels. The risks are really high here!

I am headed to San Francisco to personally pick up copies of all of Bailey's scans to Federal Express to New York on Monday morning. Because of the new HIPPA laws, they cannot get them Fed Exed in a reasonable amount of time, but can release copies to me immediately. I can then do what I want with them, which will be to Federal Express them to the surgeon at Memorial Sloan-Kettering Cancer Center.

That is all I have time for now. Please say as many extra prayers as possible for our precious Bailey. We did get another bit of good news today, that being his VMA is 9 (<17 is normal and his was 7 last time and 9 the time before that). So basically his VMA is unchanged for at least the last 8 months, which is a possibly good indication that whatever this new lesion is is another ganglioneuroma.

Anyway, I will try to update as often as I can. In the meantime, we are planning on having the best Christmas ever, followed by Cameron's 3rd birthday the day before we leave to NY!

PRAYERS,

Kelly

Thursday, December 11, 2003 2:21 PM CST

DAY +838

So those prayers need to be quadrupled. We are still waiting to hear more today, but there is a suspicious area near Bailey's liver that is going to be reviewed at tumor board today to see if what we need to do!

My poor precious angel feels and looks so good it just CAN'T be anything, but until we know for sure, all of our worst fears are back!

I will update more when I know more, but until then PLEASE PRAY FOR MY PRECIOUS ANGEL!

Kelly

Thursday, December 4, 2003 11:10 AM CST

DAY 831

I think we are all finally on the mend! But not without a lot of bumps on the way! Cameron was up all night on Thanksgiving with a fever and an ear ache. He was started on a stronger antibiotic on Friday, which broke his fever.

BUT then on Tuesday afternoon he got a lot of mysterious bumps that ended up in a trip to the ER because we thought it may be chicken pox - which is still very dangerous for Bailey. Well, the ER doc was an ABSOLUTE idiot and we left there after 4 hours with nothing more than a migraine headache for mom!

Cameron woke up yesterday morning with the "bumps" pretty much gone! I was excited until yesterday afternoon when they were back!

I rushed him to our regular doctor who took one look and said they were hives and that Cameron must ALSO be allergic to penicillin! So much for an ER doc being able to diagnose a simple hive!

The reason I thought they could be chicken pox is because he had them in all the "warm" spots, then he started getting them elsewhere!

So now both boys are allergic to penicillin and they are both on different antibiotics!

Now we are headed to Grandma's because Bailey has scans next week! I can't believe it has already been four months!

Please say lots of extra prayers that Bailey's scans next Thursday will yet again confirm our miracle! We want nothing more than a happy, HEALTHY, holiday season!

Until next week......

Kelly

Thursday, November 27, 2003 10:39 AM CST

DAY +824

HAPPY THANKSGIVING!

This virus that is going around is horrible! Bailey (with fingers crossed) finally broke his fever after 6 days! Cameron's has been gone since Monday at 1:30 am. Cameron then got a horrible rash which he still has along with a nasty cough. Bailey also has a horrible cough.

I ended up with the bug night before last and ached horribly yesterday. Today the aches are gone but I know have a head cold and cough.

Today will be a wonderful day surrounded by family and friends. We hope everyone has a happy, healthy and safe holiday.

We have so much to be thankful for!

Kelly

Saturday, November 22, 2003 1:43 PM CST

DAY +819

Only hours after we took the most amazing picture above, both kids were down in the dumps with fevers!

As sick is it may sound, I'm glad they both have fevers because when I thought it was only Bailey, my heart sunk! Fevers are NOT a good thing and are a lot of times the first symptoms of NB.

Not that my fears are completely gone, nor will they ever be, but after speaking with the doctor on call (who has receivecd 20 calls already today for the same thing)I feel a little better. There is a virus going around that lasts up to 36 hours that includes a fever, along with all of the other symptoms Bailey and Cameron have.

Cameron has been on antibiotics since Wednesday and now has a fever. Bailey just finished two rounds of antibiotics and now has a fever and Cameron's cough!

So now I guess its time I learn how to take care of kids with "regular" childhood illnesses. I've never had to before and although it may sound stupid, I don't know how! I can take care of a child fighting for his life while poisons are being continuously injected into his body, but a common fever and cold, well....

I think it is mostly because of the fear. As all parents of cancer survivors know, anytime something unusual or different happens, the first thing that comes to your mind is not good.

Well, I'm off to comfort my precious angels.

Kelly

Wednesday, November 19, 2003 10:19 AM CST

DAY 816

It was just about this time four years ago that Bailey got his mysterious black eye. I remember he was in his bouncy seat while I took a shower. He didn't have a black eye when I got in the shower and when I got out he did! He had his little sing and say toy and I thought he must have bumped himself in the eye, but he never cried.

Ronnie came home from getting a hair cut and wanted to know what happened.

Never in our wildest dreams did we think we would endure what we have the last four years! His eye, instead of getting better for Christmas pictures, just got blacker and blacker and blacker.

So in a matter of probably five minutes our precious baby went from looking and feeling totally perfect, to having one of the first signs of Stage IV Neuroblastoma.

One of my favorite pictures of Bailey is now on the front page and if you look closely you can see his black eye under his right eye.

I can't even begin to express how thankful I am to have my precious baby happy, healthy, in pre-school with that ever so precious smile and wit that only Bailey has.

Hug your kids, kiss your kids and tell them that you love them an extra couple of times because they are our precious gifts and we should treasure every moment we have with them!

Kelly

Saturday, November 15, 2003 10:10 AM CST

DAY 812

So we all seem to be on the mend here! Bailey's second round of Zithromax seemed to finally do the trick for him! He got two shots on Wednesday and wasn't too happy about that!

Cameron still has a pretty nasty cough, but it seems to be going away slowly but surely!

We have spent the last three weeks fighting with our home warranty company to do something about our broken oven and have now had to resort to filing a suit against them! DON'T EVER USE FIRST AMERICAN HOME BUYERS PROTECTION if you are either selling your home or buying a new one that comes with a home warranty! I have never been so disgusted in my life! Our microwave and dishwasher haven't worked since the beginning of September and now it has been over three weeks since our oven has worked and all three are only 2 years old! Oh yeah - DON'T EVER BUY FRIGIDAIRE EITHER! Their horrible!

Sorry for the rambling!

Bailey continues to LOVE pre-school! It is so much fun to pick him up and see what kind of stuff he got to do that day! So many neat little treasures to hold on to!

We are off to grandma's for a couple of days and then back home to try to find a way to have a working oven for Thanksgiving! This is our first Thanksgiving in our new house and the first Thanksgiving in over 5 years that we will be able to have family over and do what we want (that is if we can cook!)!

Hug your kids!

Until next time...

Kelly

Wednesday, November 5, 2003 8:12 PM CST

DAY +802

So we have had a full couple of days! Cameron somehow scratched his eyeball last night, which ended up in a trip to the ER for about 3.5 hours. Then, after getting home at midnight and finally getting him to sleep, Bailey woke up crying with an ear ache and we were up till 3:30!

I already had appointments for the boys today for shots, but it turned into an appointment to get Bailey back on antibiotics, a looksy at Cameron's eye, and two shots for Cameron. All of this after working from 8:00 till 2:00!

So now hopefully everyone will be on the mend and we can all get a little rest around here!

Happy Fall!

Kelly

Wednesday, October 29, 2003 8:46 PM CST

DAY +795

PLEASE PRAY FOR ALL OF THE FIREFIGHTERS BATTLING THE HORRIBLE FIRES IN SOUTHERN CALIFORNIA!

Thankfully Ronnie is not down there - yet. He is helping to cover his station here while A LOT of his guys are down there.

We've already lost one firefighter (from Novato, CA)! The insane fools behind this should be treated as bad if not worse than the terrorists! How dare they destroy our homeland and put people like my husband and my childrens' dad at risk! Not to mention peoples lives that are being destroyed every second by the devastation of the fires.

PRAYERS FOR ALL OF THE MEN AND WOMEN OUT THERE TRYING TO SAVE OUR LAND!

Kelly

Sunday, October 26, 2003 6:47 PM CST

DAY +792

As you can see from the picture above, the boys had a great time at the pumpkin patch!

This pumpkin patch is amazing! They have train rides, pony rides, bounce houses, hay tunnels, a petting zoo, etc., etc., etc.

The only problem is that all the other stuff takes away from the fun of picking out pumpkins!

Check out the rest of the new pictures! I just got Disneyland pics back also, so I will add those in a few days!

Kelly

Wednesday, October 15, 2003 8:55 PM CDT

DAY +780

The picture on the front page is Bailey running through the waves at Huntington Beach. They absolutely loved the ocean (if you couldn't tell)!

There are new pictures on the photo page too! I will have to rotate as we have LOTS of fun pictures!

We're off to the Bay Area to a Sharks game and to get Bear back! We've missed him terribly!

Love,

Kelly

Saturday, October 11, 2003 10:13 PM CDT

DAY +776

We made it home from our wonderful trip to Disneyland! 10 days is a little long to be gone, but we did have a great time!

Bailey absolutely loved all the rides and Cameron hated them! Cameron loved seeing the characters and Bailey wouldn't look at them! It was fun being there with Nonny, Papa, Uncle Corey and Lexi! It was Lexi's first trip to any type of theme park and she had a blast! I should have pictures soon!

Now we are just trying to unwind a little bit and get settled!

I'll try to get pictures up soon!

Kelly

Thursday, October 2, 2003 11:53 PM CDT

Lunch for Life

The Plea

October 2, 2003

A CALL TO ACTION FROM A PARENT WITH A PURPOSE

It is October 2, 2003, a day that will live in the hearts and the memories of many families for the rest of our lives. Today is the day that will mark a significant change in the world of neuroblastoma. With your help we will level the playing field and give research the necessary boost to obliterate this human tragedy from this earth. I plead with all of you, that today you help our family -- and therefore the families of Neuroblastoma victims all over the world. This will only work once and this is my best hope at making a truly significant impact while I still have the opportunity to do so.

October 1, 2003 officially launches the "Lunch for Life" campaign, an ambitious fundraising effort to raise ten million dollars in just ten short days. I ask you to make a donation to the Children's Neuroblastoma Cancer Foundation in the amount of five dollars - just the cost of lunch for one day - right now. Please do it for Bailey, for the thousands of parents crying for a cure, or do it for the thousands who are yet to be diagnosed. Do it because you are our friends and family. Whatever reason you find. It can be because of the statistics - because neuroblastoma is greatly under funded. Do it because of our story. Do it because of somebody else's. Do it for any of the reasons that we have discussed over the past few weeks. Do it as a "snooping" tax for reading my diary. Do it so that they can afford to buy a book to improve my grammar. Whatever the reason you choose, please do it, and do it now. Think of it as giving up one lunch this month for a cause that is important to some one who is close to you. Or better yet think of it as paying five dollars to be a part of changing history. It is a small price to pay and we will save lives, precious children's lives. Hopefully, five dollars is an amount that no one will miss but that could make the difference in thousands of lives. If you have decided that this is your cause, that you are inspired to do more, then please give now. Give up one lunch a month for the year, for the rest of your life, whatever your tolerance is to give to a cause that you believe in. I then ask that you call 5 of your best friends. Friends that you can trust and people that will do this favor for you as you have done for me. Give them the information, tell them the story, inspire them and ask them to do the same as I have asked of you. Ask them to call five of their friends and pass on the challenge. This will only work, it will only make the needed impact, if we go ten levels deep in this web of giving. If you can find more people to give, great, if not that is okay. Some of you will tell hundreds and for that I am truly grateful, but no matter what, I need you to be diligent. Please follow up with your five best hopes and keep the giving growing. We have to make sure that we inspire our five friends to follow in our footsteps. Pick five friends that you know will do it and that will continue the effort. Follow up with them. Use this as your opportunity to stay in touch with someone that is close to you. Everybody must inspire the group below them and follow up. I know it is work. I know I am asking a lot. But this could do it. This could make the difference today, right now. This could be the single effort that does it, that produces the cure. Honestly, for me it would be worth the five dollars and five phone calls just to see if the theory behind a chain letter actually works. Nevertheless, I implore you. You have asked how you can help. Help me change the world over the next 10 days. Your donations will go to research to cure neuroblastoma. It goes to an organization that is lead by parents and medical professionals dedicated to the cause whose sole purpose in life is for the love of their families, these children, and the cure of neuroblastoma. It is a tax deductible contribution to you. You can give directly to the CNCF here (http://www.cncf-childcancer.org), it is a secure web site and a preferred method to make your donation.

or

Your donations will go to research to cure neuroblastoma. It goes to an organization that is lead by parents and medical professionals dedicated to the cause whose sole purpose in life is for the love of their families, these children, and the cure of neuroblastoma. It is a tax deductible contribution to you. You can give directly to the CNCF here http://www.cncf-childcancer.org , it is a secure web site.
or

go to www.sydneydungan.com

or

You can mail your check to this address:
CNCF
P.O. Box 6635
Bloomingdale, IL 60108
or
You can call this 800 number and give your gift by phone
1-866-671-2623
or

If that is not enough you can call me and I will have a volunteer call you back for the donation.
1-773-631-9050

We can do this. It isn't only about the five dollars, it is about your five friends. That is the tough part, but it will be what makes the difference.
Let's take a stand together. From the bottom of my heart, I thank you once again for helping me. I don't have the words but I can tell you that it makes all of the difference in the world to both me and my family. Just imagine, we are now a part of changing the world, saving thousands of children's lives, and we did it for five dollars

Tuesday, September 30, 2003 9:07 PM CDT

DAY +763

Ronnie and I had a great time in Vegas, but missed the boys terribly! They both had a great time with Grandma!

I got to be class mom today at Bailey's preschool and I don't know who had more fun! It was so truly amazing getting to see him be a normal 4 year old!

I'm now off to pack for our next adventure - DISNEYLAND!

We leave Thursday after school and will be gone for 10 days! Sorry for the delay in updates, but we haven't spent enough time at home lately to even turn the computer on!

Until next time, hug your kids and make sure they know you love them!

Kelly

Friday, September 19, 2003 9:24 PM CDT

DAY +752

I see a whole week has gone by without an update! SORRY! The kids have been keeping me very busy! Both of them have had nasty colds, but are finally getting over them. The joys of having a child in school!

Speaking of school...Bailey absolutely LOVES it! He can't wait to go and they have done a lot of fun things already! He is always bringing home some sort of project they worked on! I bought a big plastic bin to put everything that he makes in! I'm hoping to do this for each year for both of them so that we can someday look back at all the fun stuff they created when they were little! And hopefully be able to use it for something neat for their kids!

Ronnie and I are off to Las Vegas on Sunday!!!!! Grandma, Nanny, Grandpa and Gidget (crazy dog) are coming to stay with the boys! They have fun keeping them busy and hopefully won't miss us too much! Ronnie has an EMS conference in Vegas and since his work is paying for his airfare, the hotel room and food money, we decided it was a cheap way for us to get away together! All we had to pay for was my airfare!

This means probably no update for another week, but please continue to check in and sign the guestbook as Bailey likes looking to see if anyone has checked in on him!

Until later...

Love,

Kelly

PS - the picture at the top is me and Bailey on his first day of school!

Friday, September 12, 2003 11:47 AM CDT

DAY 745

So another week of school behind Bailey and he can't wait to go again! He seems to have made a few friends and really likes his teachers. He did have a crash yesterday and scraped his forehead. Boys will be boys!

We are excited because tomorrow is the Big Dig! We get to go drive all sorts of tractors, dump trucks, etc. The boys love doing this.

I was looking back at my e-mails from this time two years ago and boy it sure feels good to be where we are now! Bailey was not doing well and watching him suffer was just about doing us in.

Now he is happier than ever and healthier than ever!

Until our next adventure...

Kelly

Monday, September 8, 2003 7:42 PM CDT

DAY +741

So Bailey's first week of school was AWESOME! He absolutely loves it! He has already made a friend - Brandon.

When asked by his uncle if he has any girl friends he said "no, but I need one!"

That's my boy!

Check out the new pictures. They are from some of the celebration for his 2nd transplant birthday. I hope to finish my film soon that has his first day of school!

Kelly

Monday, September 1, 2003 4:42 PM CDT

DAY +734

So tomorrow is going to be one of the best days of our lives!

Bailey starts pre-school tomorrow - something we thought we may never get to see him do! Something most people take for granted and something that means more to us than ever! Tomorrow is going to be so special! Our little boy is healthy and happy and going to school! What a truly special day it will be!

I'm sure most people there will think we are crazy because we will have cameras, other people are coming to see him go in for his first day!

To think of where we were 2 years ago at this time and to think of where we are today is truly amazing! He has come so far and is doing so well in life! God only knows he deserves it!

Stay tuned for pictures of our precious angel off to school!

GO BAILEY GO BAILEY GO BAILEY GO BAILEY!

Love,

Kelly

Wednesday, August 20, 2003 7:29 PM CDT

YIPPEEEEEEEEEEEEEEEEEEEEEEEEEEEE!

We got the news we needed today! Bailey's scans were yet again perfect! He had a rougher time coming out of anesthesia today, but once he woke up he was fine!

Now we don't have to go back until December!

He also has grown 3 inches in 4 months and gained a couple of pounds. He is now in the 10th percentile for heighth and 50th percentile for weight! He has never been on the charts!

Thanks for all the prayers - they were answered once again!

Love,

Kelly

Wednesday, August 20, 2003 0:59 AM CDT

DAY +722

Platelets 154,000!!!!!!!!!!!!!

Normal 150,000-450,000

I never thought I would see the day that we would see Bailey have a platelet count in the normal range!

This was the news we needed to hear after he gave us one of the many scares of his short life! He was playing hide and go seek with his brother and hid under his cousins bed. We didn't know he was playing that game with his brother. We couldn't find him, started screaming for him and he never answered. Within a matter of minutes, his grandma and aunt were driving all over the neighborhood looking for him. His cousins were running all over the neighborhood and his dad was on a bike.

His uncle and I came back in the house and started searching again, all the while screaming with no answer.

His uncle decided to take another look under the beds and there he was just laying there!

I gained about 5 million new grey hairs in that couple of minutes!

After that I needed some relief so I called to check on his counts that we should have waited until tomorrow to find out! We were so extatic to find out his counts are so good!

Tomorrow is the big day for scans and we will know the results tomorrow afternoon when we meet with his doctor!

I will update the news then.

Until then....

Kelly

Sunday, August 17, 2003 11:19 PM CDT

DAY +730

HAPPY 2ND TRANSPLANT BIRTHDAY! THINGS SURE ARE DIFFERENT TODAY THAN 2 YEARS AGO TODAY!

We had the best day ever! We started by going to Tilden Park to ride two trains, then off to the pony rides. From there we went to a little farm and then to the Merry go Round!

From there we went to another park and then to Pizza.

We have had an absolute blast today, although in the back of our minds at all times we were thinking about what we were doing 2 years ago today!

HAPPY 2ND BIRTHDAY OF YOUR NEW LIFE ANGEL! WE ARE FOREVER THANKFUL AND PRAY FOR GREAT NEWS AGAIN ON WEDNESDAY!

LOVE FOREVER AND EVER,

MOMMY & DADDY

Thursday, August 14, 2003 8:12 PM CDT

DAY 727

3 MORE DAYS AND IT WILL HAVE BEEN 2 YEARS SINCE BAILEY'S TRANSPLANT!

HE WOULD HAVE FINISHED HIS CHEMO TODAY AND WAS NOT FEELING WELL! HE ALREADY HAD A FEVER AND HAD STOPPED EATING! I BELIEVE THIS IS WHEN WE WERE CONCERNED THAT HE MAY ALREADY HAVE PNEUMONIA - NOT GOOD CONSIDERING HE HADN'T EVEN RECEIVED HIS STEM CELLS AND BONE MARROW BACK YET!

I DIDN'T START THIS CARINGBRIDGE SITE UNTIL PART WAY INTO OUR STAY FOR TRANSPLANT, BUT WAS LOOKING AT THE E-MAILS I USED TO SEND EVERY DAY AT THIS TIME AND I CAN'T EVEN BEGIN TO EXPLAIN HOW WONDERFUL IT IS TO BE WHERE WE ARE TODAY!

I WOKE UP THIS MORNING AND JUST LAYED THERE AND LOOKED AT MY PRECIOUS ANGEL SLEEPING SO PEACEFULLY AND CAREFREE! 2 YEARS AGO HE HAD TO BE THE MOST MISERABLE PERSON IN THE WORLD AND I KNEW WE HADN'T EVEN GOTTEN TO THE WORST OF IT! I KNEW THE DAYS AHEAD WERE ONLY GOING TO BE WORSE AND I DIDN'T SEE HOW THAT COULD BE POSSIBLE! IT SURE WAS THOUGH!

I KNOW WE DID WHAT WE HAD TO DO TO GET HIM WHERE HE IS TODAY AND I AM THANKFUL FOR THE OUTCOME!

WE ARE ANXIOUSLY AWAITING THIS NEXT WEEK WHEN HE WILL HAVE HIS NEXT SET OF SCANS! IT STILL DOESN'T SEEM TO GET ANY EASIER! I STILL GET JUST AS NERVOUS EVEN THOUGH I KNOW MY ANGEL IS FINE! I NEED TO HEAR IT FROM THE DOCTORS AND TO SEE FOR MYSELF THAT THIS HORRIBLE BEAST IS NO LONGER IN HIS PRECIOUS BODY!

PLEASE SAY EXTRA PRAYERS THAT BAILEY'S SCANS CONTINUE TO BE PERFECT - JUST LIKE HE IS! THEN WE CAN COME HOME AND GET HIM READY TO START PRE-SCHOOL IN 2 WEEKS!!!!!!!!!!!!!!!

I WILL POST RESULTS AS SOON AS I HAVE THEM. IN THE MEANTIME......

PRAYERS,

KELLY

Thursday, August 14, 2003 8:12 PM CDT

DAY +727

3 MORE DAYS AND IT WILL HAVE BEEN 2 YEARS SINCE BAILEY'S TRANSPLANT!

HE WOULD HAVE FINISHED HIS CHEMO TODAY AND WAS NOT FEELING WELL! HE ALREADY HAD A FEVER AND HAD STOPPED EATING! I BELIEVE THIS IS WHEN WE WERE CONCERNED THAT HE MAY ALREADY HAVE PNEUMONIA - NOT GOOD CONSIDERING HE HADN'T EVEN RECEIVED HIS STEM CELLS AND BONE MARROW BACK YET!

I DIDN'T START THIS CARINGBRIDGE SITE UNTIL PART WAY INTO OUR STAY FOR TRANSPLANT, BUT WAS LOOKING AT THE E-MAILS I USED TO SEND EVERY DAY AT THIS TIME AND I CAN'T EVEN BEGIN TO EXPLAIN HOW WONDERFUL IT IS TO BE WHERE WE ARE TODAY!

I WOKE UP THIS MORNING AND JUST LAYED THERE AND LOOKED AT MY PRECIOUS ANGEL SLEEPING SO PEACEFULLY AND CAREFREE! 2 YEARS AGO HE HAD TO BE THE MOST MISERABLE PERSON IN THE WORLD AND I KNEW WE HADN'T EVEN GOTTEN TO THE WORST OF IT! I KNEW THE DAYS AHEAD WERE ONLY GOING TO BE WORSE AND I DIDN'T SEE HOW THAT COULD BE POSSIBLE! IT SURE WAS THOUGH!

I KNOW WE DID WHAT WE HAD TO DO TO GET HIM WHERE HE IS TODAY AND I AM THANKFUL FOR THE OUTCOME!

WE ARE ANXIOUSLY AWAITING THIS NEXT WEEK WHEN HE WILL HAVE HIS NEXT SET OF SCANS! IT STILL DOESN'T SEEM TO GET ANY EASIER! I STILL GET JUST AS NERVOUS EVEN THOUGH I KNOW MY ANGEL IS FINE! I NEED TO HEAR IT FROM THE DOCTORS AND TO SEE FOR MYSELF THAT THIS HORRIBLE BEAST IS NO LONGER IN HIS PRECIOUS BODY!

PLEASE SAY EXTRA PRAYERS THAT BAILEY'S SCANS CONTINUE TO BE PERFECT - JUST LIKE HE IS! THEN WE CAN COME HOME AND GET HIM READY TO START PRE-SCHOOL IN 2 WEEKS!!!!!!!!!!!!!!!

I WILL POST RESULTS AS SOON AS I HAVE THEM. IN THE MEANTIME......

PRAYERS,

KELLY

Thursday, August 7, 2003 12:15 AM CDT

Day +720
CHECK OUT BAILEY ON THE COLLINS LAKE WEBSITE (WHERE HE CAUGHT HIS FISH). The address is:

www.collinslake.com

Then go to current fishing. The picture to the left of him is the daughters of another firefighter Ronnie works with!

So somewhere I must have missed a few days when I put how many days we are post transplant BECAUSE IN 10 DAYS it will be 2 YEARS since Bailey's bone marrow transplant!

Sometimes I can't believe it was that long ago and other times it seems like yesterday!

Anyway, just wanted you all to see what a star my angel is!

Love,

Kelly

Thursday, July 31, 2003 11:24 PM CDT

Day +692

CHECK OUT THE NEW PICTURES!

We had an absolute blast at Collins Lake. I can't believe we have never been there before! It is a really nice lake.

The camping was awesome! The fishing was awesome! The water was 82*! The home-made ice cream was to die for! And thank God for air conditioning in the camper! It was over 100* every day!

The boys had a great time with their cousins and it was just a fun week! We had a great time with Dave from Dad's work and just had fun hanging around!

Will update more later...


Love,

Ronnie, Kelly, Bailey, Cameron & Bear

Saturday, July 26, 2003 9:53 PM CDT

DAY 687

So as you can see from the new pictures, we are having a great time with Lexi!

The kids weren't too cooperative today taking pictures, but we got a couple that turned out cute!

We then went up to Lake Tahoe for the annual USC BBQ and ended up having to leave because it started to rain and we had the jeep.

Well the boys and I got POUNDED with hail and had to stop and find cover. The jeep was soaked by the time we were able to finish our journey home and the kids were NOT happy. They survived!

We are going to have another BBQ tomorrow at Nonny and Papas before Corey and Lexi head out on Monday! We sure do wish they could stay longer and spend some more time. Since they are leaving, we are heading out Monday to go camping till Thursday.

Then we come back for a couple of weeks and then head down for Bailey's next round of scans! He is approaching is 2nd transplant birthday (August 17)! I can't believe it has almost been 2 years since we went through living #$@

We are just so thankful for his health!

Until our next adventure....

Love,

Ronnie, Kelly, Bailey, Cameron & Bear

Monday, July 21, 2003 7:54 PM CDT

DAY +682

As you can see from the new pictures, the boys have been having a great summer!

Bailey was yet again the star at the Relay for Life in Gardnerville! Papa got up and spoke about him and Bailey made an attempt to talk in the microphone! He also gave everyone a "thumbs up"!

We are getting excited about Uncle Corey and Cousin Lexi coming! They will be here Wednesday night!

Until later...

Love,

Ronnie, Kelly, Bailey, Cameron & Bear

Sunday, July 13, 2003 11:46 AM CDT

DAY 674

The boys have been feeling better than ever! We have really been enjoying the nice weather and our pool! The boys are sure both getting pretty brave in the pool! They both like jumping from the steps without anyone catching them!

We are getting excited about Uncle Corey and Cousin Lexi coming soon! It has been almost a year since we have seen them! The three of them should have a great time together!

Bailey's last hearing test was much improved from the previous tests - he finally cooperated like he should. He still has some hearing loss, but nothing like it appeared to be at first.

We are going to give him 6 months and do another test. Hopefully then he will be a little more mature and do what needs to be done to find out more accurately exactly what is going on. For now, we are going to take advantage of him not having hearing aids. If he ends up needing them - fine! If not - YYYIIIPPPEEEEEEEEEEEEEEEE!

Love and prayers,

Ronnie, Kelly, Bailey, Cameron & Bear

Saturday, July 5, 2003 9:23 PM CDT

DAY 666

We had the BEST time for the 4th! We were able to get a camp site and buoy for the boat at Emerald Bay where we hung out all day. Then we headed for the fireworks and got front-row in our boat. The fireworks display this year was out of this world! I have never seen anything like it!

Cameron made it about 1/2 way through the show and Bailey watched the whole thing. He did fall asleep on the ride back to camp and they were both out for the night!

We hung out in Emerald Bay again today and then pulled the boat out this afternoon.

The one thing I have to say is that I sure don't miss tent camping! We had to tent camp last night because the only way to get to Emerald Bay's campground is by boat! But we still had a great time!

Bailey and Cameron made some friends whose campsite was right in front of ours. They were 5 and 2.5, so it was perfect!

We are all worn out now and are hoping for a good night's sleep in our own beds!

Hope everyone had a happy 4th!

Ronnie, Kelly, Bailey, Cameron & Bear

Wednesday, July 2, 2003 12:31 AM CDT

DAY 663

It sure feels good to be home! We have been so busy getting unpacked and now we are getting excited about the 4th!

We go to the audiologist on Monday for Bailey's final hearing test and they will also take impressions at that time for his aids! We are debating on whether to let him pick out colors for his aids or if we should go with neutral and keep them as discreet as possible. I have a feeling with as big as they are, it is not going to matter whether they are a color or not. We will have to see what Bailey thinks! It will take about 2 weeks for them to be made and then will be the big adjustment of Bailey getting used to something always being in his ear! I know lots of kids who have done well and I know he will too, just something new!

Anyway, if I don't get back before Friday........

HAPPY 4th!!!

Love,

Ronnie, Kelly, Bailey, Cameron & Bear

Monday, June 30, 2003 8:12 PM CDT

DAY +661

WHAT AN AWESOME TIME AT SHASTA!

We could have used a little cooler weather though! It was at least 105* every day!

The boys had a blast playing in the water and going on the boat and tubin'.

It was great to get away and have a week of fun, but we were all ready to come home and take a real shower and sleep in our own beds!

We started out the trip kind-of rocky with our fridge not working in the camper and a propane leak, but we got that fixed on our way. Then we ended the trip with me getting stung by a bee! Thank God my allergies have gotten better and I didn't have a bad reaction!

Now its back to business (which for the boys just means more playing)!

We are gearing up for the 4th out on the boat watching fire works!

Love,

Ronnie, Kelly, Bailey, Cameron & Bear

Thursday, June 19, 2003 6:58 PM CDT

DAY +650

How in this world
Can we put a man on the moon
And still have a need
For a place like St. Jude
And why is one man born
In a place where all they know is war
A guy like me,
Has always been free

And how can two people
Who built a loving home
Try for years
And never have a child of their own
And somewhere out there tonite
There is a baby no ones holding tight
In need of love
To me that don't add up

But I wasn't there when you filled up the ocean
I didn't get to see you hang the stars in the sky
So I don't mean to second guess you
Or criticize what I don't understand
These are just a few questions I have

And why did my cousin
Have to die in that crash
A good kid
Only seventeen
I still wonder 'bout that
It seems unfair to me
Some get the chance to chase their dreams
And some don't
What do I know

I wasn't there when you filled up the ocean
I didn't get to see you hang the stars in the sky
So I don't mean to second guess you
Or criticize what I don't understand
These are just a few questions I have

Why do I fell like
You hear these prayers of mine
When so many oughta be
Ahead of me in line
When you look down on me
Can you see the good through all the bad
These are just a few questions I had.

- Clay Walker -

Thought this was a pretty fitting song!

Love,

Ronnie, Kelly, Bailey, Cameron & Bear

Tuesday, June 10, 2003 10:26 PM CDT

DAY +641

Our dear sweet Aunt Dorothy (Dodo) went to be with the angels. She battled a brave fight against breast cancer and peacefully went to sleep on Saturday.

She will be missed by all and Bailey has yet another angel on his side to keep him healthy and carefree!

Please say an extra prayer for our family as we lay to rest one of the most precious people in our lives.

Aunt Dodo, we will miss you greatly but know that you are in a better place.

Love,

Ronnie, Kelly, Bailey, Cameron & Bear

Tuesday, June 10, 2003 10:26 PM CDT

DAY +641

Our dear sweet Aunt Dorothy (Dodo)went to be with the angels. She battled a brave fight against breast cancer and peacefully went to sleep on Saturday.

She will be missed by all and Bailey has yet another angel on his side to keep him healthy and carefree!

Please say an extra prayer for our family as we lay to rest one of the most precious people in our lives.

Aunt Dodo, we will miss you greatly but know that you are in a better place.

Love,

Ronnie, Kelly, Bailey, Cameron & Bear

Monday, June 9, 2003 5:15 PM CDT

DAY +640

FINDING NEMO!

Disney and Pixar never cease to amaze me with the violence in their movies. These are animated films for children! I shouldn't have to take my child out of the movie hysterical because it is so scary! And Bailey's not that easily scared!

Once I got him calmed down and got a bag of popcorn, he did much better! The movie was actually really cute with the usual adult humor, I just could have done without the first 15 minutes of the movie.

I took Bailey back to the audiologist today and we got a little clearer picture of where his loss is. We are going to attempt one more time next week because his patience is so short and hopefully narrow down where the loss starts and stops. It was very obvious even to me that he has lost hearing. I was sitting outside the booth, Bailey had headphones on, I could hear the noise he was supposed to be hearing through the headphones and he didn't hear it at all! On the chart that shows his loss, it is not a gradual decent when you get to the higher frequencies, it pretty much just drops off the graph!

That is okay, we can easily fix this problem and we are on our way!

The boys colds are slowly but surely getting better. Now everything is loosening up and they are coughing.

Other than that, we are still enjoying the beautiful weather and our wonderful backyard!

Love,

Ronnie, Kelly, Bailey, Cameron & Bear

Saturday, June 7, 2003 10:49 AM CDT

DAY 638

WHAT A TRULY AMAZING NIGHT WE HAD! Chris' movie was unreal! You would never even begin to imagine that a high school senior put this whole production together!

It all started off with a limo ride in a Lincoln Navigator limo that holds 20 people - of course Chris wanted us to be able to go by ourselves! Then a stroll up the red carpet into the theatre. Then Chris called us up on stage and had gifts for the kids.

I cannot believe how blessed we are to know such a wonderful family. Chris is yet again donating 1/2 of the proceeds of last night to Bailey.

Of course everyone fell in love with Bailey and Cameron. Cameron wouldn't tell anyone his name, but everyone at South Tahoe High School knows he's 2!

There was some ice cream we missed at the premier, so Dad had to stop at Baskin Robins on the way home! We ended up not getting home until around 11:00.

I've said it before and I'll say it again, if our boys can turn out to be half the boys Chris and Nick are, we will be truly blessed. Don't get me wrong, I know we are already truly blessed.

Well, its off to the backyard to try and finish up! Both the boys now have a cold and I'm hoping to get them past this as soon as possible.

Love and prayers,

Ronnie, Kelly, Bailey, Cameron & Bear

Tuesday, June 3, 2003 3:44 PM CDT

DAY +634

***********CHECK OUT THE NEW PICTURES*************

So if you couldn't tell, the boys have been having a great time in this weather! We played at Nana's house yesterday and they had a lot of fun in her wading pool! It sure felt good in this heat!

Bailey got Candyland the other day, and we play non-stop. Actually he is beggin to play again right now so...........

Love,

Ronnie, Kelly, Bailey, Cameron & Bear

Friday, May 30, 2003 10:16 PM CDT

DAY +630

So our backyard is almost complete! We had sod layed on Tuesday, we moved 40 cubic yards of rock on Wednesday and Thursday and this evening we had the curbing done. It looks really nice and will be a lot of fun to have a functional backyard!

We also have a new feature which will take us a little while to get together! We bought an above-ground pool. It is 15' in diameter and 42" deep. It should help to break up the hot summer days around here! Now we just need to get the boys some swimming lessons!

The boys have both been doing great. Bailey's latest is his knock knock jokes. No idea where he learned them, but they are pretty cute!

The Fails family that has so generously donated to Bailey through their children's birthday parties the last couple of years has yet again amazed us! Morgan and Megan had their birthday party a few weeks back and stopped by the other night with $900 from their party! What a truly amazing gift these children have given Bailey and also a great gift they are learning in giving to others.

Also, Chris Smith (the juggler) justed called and said that he has written, produced, directed, etc., etc., his first screenplay. He is having his premier next Friday with limos, red carpet and all. We are going to attend the premier and get to ride in the worlds longest limo (a Lincoln Navigator)! For Chris and his family to still think of us is truly wonderful - especially with the change in insurance and Bailey now needing hearing aids (which insurance won't pay for anything)!

We continue to be truly blessed by all of the wonderful people in our community!

Love,

Ronnie, Kelly, Bailey, Cameron & Bear

Thursday, May 22, 2003 11:09 AM CDT

DAY +622

The weather sure has turned around here! A couple of weeks ago it was an absolute blizzard and now the temperatures are in the 90's! We sure have enjoyed this nice weather!

I took Bailey yesterday for an audiogram (which he should have had 1 year post-transplant but the doctors never followed up on) and it appears that at this point he has enough hearing loss to require hearing aids. He can definitely still hear without them, it is just that he has to work too hard at it. Since these years of learning and school are so critical, I don't want him to have any disadvantages or have to work any hard than he needs to.

It kind of all came together when I was talking to the doctor about how Bailey used to leave the first letter off almost every word. He has always said "mama" and "dada", but he also said those before he was diagnosed at 9 months. It was after he started chemo that the habit started. Come to find out, it wasn't just Bailey latin - he didn't always hear those first sounds.

Although his speech has improved greatly with a lot of hard work on all of our parts, his little ears are still having to work harder than they need to.

If this is the worst of our problems after all he has been through, NOT A PROBLEM! Things like this that can easily be fixed are not a big deal to me! As long as he has his health, we can deal with the the rest of the hurdles!

So, if anyone has any good recommendations for hearing aids, we are all ears (no punn intended).

Love and prayers,

Kelly

Sunday, May 18, 2003 5:14 PM CDT

DAY +618

We have had a busy week and weekend! There was a community garage sale yesterday for all of Saratoga Springs Estates. 70 houses were involved. I also decided to try and help out the family from our town whose 13 year old was just diagnosed with Neuroblastoma. Anyone who wanted their garage sale items picked up after the sale ended to donate for a rummage sale for Justin could call me and we would pick it up. Well 7 trucks, 3 loads each, 46 houses later, we were finally done!

I was very excited about the response I received, but was also a little disappointed in the people who thought it would be an easy way for them to get rid of their garbage! We are trying to raise funds for this family, not be a garbage service! And what was the most amazing was the people that were amazed that we didn't want their garbage - and I mean garbage (turkey wish bones, old used turkey pans, newspapers, mail, etc.).

Anyway, with the good stuff we did collect, I hope it helps out to raise some money for Justin's family.

The boys were actually pretty good about the toys I had set out to sell! I figured everything that was out would end up back in our house!

Today I took the boys up to "Daddy's Work" where there was a kids day with all kinds of things to do. Ronnie's fire department was there with their smoke trailer, the police were there with their police dogs, there was a helicopter, and all kinds of stuff for the kids to do and learn.

The boys didn't have too much patience for some of it, but it was a nice little outing and Tahoe was beautiful!

So, for now, we are enjoying the wonderful weather we have been having and looking forward to getting the camper ready for our first camping trip of the season!

Love and prayers,

Ronnie, Kelly, Bailey, Cameron & Bear

Sunday, May 11, 2003 2:09 PM CDT

DAY +611

HAPPY MOTHER'S DAY!

And boy what a great Mother's Day this is for me! I couldn't have asked for anything more than the perfect scans of last week!

I am still getting spoiled though with flowers, a CD and a new bike! Oh yeah, and a great breakfast (which the boys ate most of)!

We are looking forward to a fun day being outside (it is FINALLY sunny!)!!!!!!!!!!

Hope all you mothers out there have as good a day as I am having! You all deserve it!

Love and prayers,

Kelly