History

Friday, January 19, 2007 8:10 PM CST

Above is photo montage of Caleb w/ music that my awesome Dad created. You can see how much he loves his grandson when you watch it. It takes you from his birth , to his battle with cancer, until today. It was a tear jerker for me, espescially the pics of when he was sick, but it makes me feel so good to see how far he has come.
Love-
Stephanie
You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I have lived through this horror. I can take the next thing that comes along.' You must do the thing you think you cannot do."
~Eleanor Roosevelt

PS.....Extra Prayers are needed for Baby ^Donovan^ and family. He earned his little Angel Wings last night 1/20 2007 at about 9:30 pm. What a little fighter he was.

Monday, December 18, 2006 5:20 PM CST

Just wanted to give a quick update that Caleb's labs and scans came back normal!!!! Yipeee! I just can't believe that in Feb he will be 5 and it will be 2 years since his diagnosis. July 2007 will be 2 years cancer free and they say that by then we can breathe easier and not have to worry as much about relapse....but we will always worry.
I hope everyone has a wonderful and healthy Christmas and 2007! Thanks so much for you continued prayers.
Please continue to pray for Baby Donovan and baby Noelle...both have relapsed after their transplants.

Saturday, December 2, 2006 10:00 AM CST

http://www.caringbridge.org/in/babydonovan/

Please visit Baby Donavan's page and let his parents know your out there praying for him. I have written about Donovan before. He was diagnosed with leukemia as an infant that was only weeks old, he has recently relapsed again for I think the 6th time. He turns 2 on December 9th. This little guy has never known a life without needles , hospitals, and pain. They have had to sell their home in Indiana and move to North Carolina to get the care he needed. He has already had transplants , but the success was short lived.

According to his mom Melissa, there are no options left to cure him. Now they are trying to just prolong his life and keep him comfortable. Please visit his page,sign his guestbook, and let them know you are out there. I have been following this family for a long time and they are very dear to my heart.
Steph

Saturday, November 18, 2006 4:05 PM CST

Everything is still going well here. Caleb has his full day of labs and scans on Monday 11/20, so pray they all come back clean. Poor guy, between normal immunizations and blood work, the boy had been getting poked by needles at least once a week for the last 3 weeks. It's minimal compared to what he and others have been through, but we still hate to see him go through this so often. Hopefully they will okay him for going to clinic every 6 months instead of every 3.
Today the kids were playing together and when Josh and I saw what they were playing, we had to freeze and hide our tears. They told us they were playing "cancer". Caleb's stuffed elephant was the patient, Caleb was the Dad, and Abby was the oncologist....they shouldn't know that word at their ages. Elephant was being wheeled around in a wheelchair(doll stroller) and she had many IV's and IV tubing attached to her body. Caleb told me that the medicine really hurts his elephant and it will make her hair fall out , but she will get better and her hair will grow back. Then he gave her a shot and a dropper full of oral meds to make her feel better. It's so strange to see them play this game like they were playing school or house. I'm glad that they can play it, it means that they are coping with it well still. Boy was it hard to hide our tears to see them play this game.
Anyway, I will let you all know when we hear Caleb's test results. Thank you for still visiting and praying!

Sunday, October 29, 2006 8:47 PM CST

Posted are just some of the photos of Caleb's wish being granted. There are many more to come and I will post them as we recieve them.

As many of you know, Caleb was nominated by Dr. Savage so that he may recieve a wish through the Make a Wish Foundation. When we moved to San Antonio, The Wish Connection / AT&T adopted Caleb's wish from Make a Wish. Caleb asked for his room to become a Cowboy Room. We really expected just a few pictures on the walls, maybe some curtains and bedding, but it turned out to be soooo much more. I really do not have any words to describe what our family experienced this weekend.
We left on Friday afternoon to experience our first part of Caleb's cowboy weekend. We were put in The Presidential Suite at the Hyatt!!! WOW! When we arrived at the Hyatt, the entire staff greeted us in the driveway with applause and balloons for the kids. A cowboy, Aubrey, was waiting to greet Caleb. Caleb went right to him and was his friend right away. My favorite part of this was Caleb holding a fistful of ballons and pretending he was floating away. He is not shy and made everyone laugh. We then went to the top floor of the Hyatt and were greeted with more applause and balloons in the hallway. When we got to our suite there was chips, salsa, guacamole, potato chips, HUGE cookies,milk, chocolate covered strawberries, soda, and tons o candy in the dining room. In the Parlor were gifts for everyone in the family and a beautiful pair of leather cowboy boots for Caleb. Cowboy Aubrey was carrying his rope with him and decided he wanted Caleb to have it. What makes this gift so special is that it was Aubrey's personal rope given to him by a very famous cowboy. It has been used for practice and in rodeos. Caleb was sooo thrilled that he slept next to the rope and boots when he went to be that night. We will never forget Aubrey and how special he made Caleb feel.
When everyone left the suite it was time for us to check it out. It had a foyer, a parlor, dining room, living room, small kitchen, a balcony, 2 bedrooms, and 3 bathrooms. It was all marble, granite, and wood. Everyroom had fresh flowers and a huge TV. They even had the newest kids dvd's for the kids to watch. It was amazing. I kept thinking, "Now I know how Kelly Rippa must feel when she stays in hotels".
We were treated to a Riverboat ride and dinnr at the Rainforest Cafe. That night before bed , the doorbell rang (yes a doorbell) and there were 2 ladies standing there with the biggest banana splits ever! The kids were thrilled!
The staff at the Hyatt was amazing and made our stay so comfortable. We felt like we were on vacation even though we were only 20 minutes from home.
The next day we set off for Y Itsa Ranch for some riding. Caleb and Abby each brought a friend. The owners of this ranch were so kind and generous. I do not have many pictures of that in here since my camera died when we got there, but lots of other people were taking pictures, so I will post some soon. It was a beautiful ranch. They greeted us with the largest horse and the smallest horse of the farm. Just the most gentle animals ever. The kids also got to meet and ride a horse that just gave birth 4 months ago. After some riding we took a break and had the most beautiful cowboy cake ever. It was so detailed! I have to mention that it was also the most delicious cake ever! Again there were gifts for Caleb and Abby. Then we got to see lots of turtle and some miniature horses and ponies. Then there was more riding. Our 3 kids slept the whole way home. We had a fantastic time and plan on being regulars at the Ranch.
Upon arriving home we noticed balloons and a big Moon Bounce in our backyard. We were greeted by a yard full of Wish Granters and friends. There were decorations and food galore. Caleb and Abby opened more gifts. It was so nice of everyone to include Abby in everything. Caleb got a pair of real spurs for his boots, a belt and buckle, cowboy cut Wrangler Jeans, a cowboy hat, and a George Strait button up shirt. I didn't even have time to take pictures at the party, but I know they are out there. It was incredible and overwhelming. It is a rare occasion when I am at a loss for words, but I was for a long time.
We went upstairs to see Caleb's bedroom and we were blown away!!!! They thought of every detail down to the leather piping around the duvet cover and window treatments with leather detail and murals done free hand on his walls. This room is incredible and by far the best room in our house now! Caleb loves it so much and doesn't want to leave his room...we have all been spending lots of time in there today. Everytime I think I have seen everything in the room, I am surprised by another thoughtful detail. I will let the pictures speak for themselves.
There were so many photos taken by others, so I will send more. There was also a videographer who was taping from start to finish...we are thrilled that we will have video to remember this weekend and humbled that he would use his entire weekend filming our family.

We were sooo humbled this weekend. Our family is not anyone special, but so many people wanted to help create this special weekend for us and a special room for our son. I loved seeing how gregarious and friendly our children were with everyone they met. I loved that they were not spoiled by all the gifts and attention. They were thrilled about every little detail...the gummy worms and MnM's and having a coffepot in their hotel bathroom was exciting for them:) You would think Abby would be jealous, but handled the whole weekend with the diginity and grace that many adults don't possess. She told me that she was so glad to see Caleb having his special day and I could tell she really meant it.
This process really helped to make San Antonio feel like home and it brought closure to that chapter in our lives. I still don't have the words to say what this meant to us. It was Caleb's wish, but it was wonderful for the entire family. I hope the Wish Connection/ AT&T understand how special they made us feel and how much it means to us that they would use so much of their personal time to make a wish come true for a 4 year old boy. I know our whole family has learned from them and will use this experience to pay it forward and make a wish come true for someone else.

Love-
Stephanie

Thursday, October 5, 2006 7:03 AM CDT

Hello everybody!
Hope you all are doing well.
I would first like to thank everybody who donated towards the Light the Night Walk. It is a wonderful cause that goes towards blood cancer research and support for the patients and thier families. The walk is on October 21st, so if you are in the San Antonio area come and join in on the fun.
Second, please keep those prayers coming for Baby Donovan. They are waiting for his transplant cells to engraft and give him another chance at a life free of cancer.
Last but not least, Caleb finally gets to see his wish come true. Some of you might remeber last year, he wanted to go to Asateague Island and have lunchwith Spidey on the beach. That could not be done while he had his Hickman i his chest (germs)so the docs wanted him to wait until this year. Well, we moved away and had the new baby , so we couldn't do it this summer either. Caleb changed his wish and wished for a Cowboy Room. Dr. Savage's (Caleb's oncologist)dad is a cowboy in Arizona, so I told him I thought he must have put some cowboy potion in Caleb's chemo.
AT & T has adopted Caleb's wish through the Make a Wish Foundation and they are going to give him his cowboy room. They showed me some of furnishings and bedding for the room and it is going to be INCREDIBLE!!!!!! Sooo much more than we ever expected. They also have so many fun things planned for our family the weekend this all takes place (Oct. 27 and 28). We are so excited and humbled by thier generosity, time, and hard work. These past 2 years have had many humbling moments for us....people are just so kind and incredible.
I will post pictures and updated the journal when his room is finished.
Caleb's next appointment is November 6 for blood work, ct scan, and echo.
October 11, 2006
Today Caleb had his first school pictures. They let me stay and watch as he got them taken. I stared in amazement at this wonderful funny boy. He kept making these goofy faces because he knew it was making everyone laugh. He had his daddy’s mischievous sparkle in his eye the whole time. I told him to just smile..no faces, but he couldn’t help himself. Then I told him to smile like he does when Daddy’s about to tickle him and he started screaming and laughing yelling “No TICKLING DADDY” and was pretending Josh was tickling him…....Josh wasn't even there...what a goofball.
Last year it was so hard to imagine that he would be this active, happy, wild , and sometimes naughty preschooler. I have to pinch myself everyday when I see the boy he has become. We have been so blessed.
As we get close to the Light the Night walk and seeing Caleb’s Wish coming true thanks to Make a Wish and AT&T, I can’t help but be reminded of how things used to be and how things could have turned out.
The further away we get from cancer, the more I remember. I remember that on laundry day I would save a couple of his dirty shirts and not wash them just in case we would never have the chance to smell him again. I also remember one day when we were blowing up balloons, I hid a couple of his balloons away so that we would always have his breath. I remember how sick he would get, he couldn’t even move. He would just want me to hold him. I slept many nights curled up in that hospital bed next to him. He was so tiny. I remember his screams during painful procedures…some of which we had to be involved . The sounds of those screams will always be inside my ears and the guilt of having to hurt him will never leave my heart. I remember holding his soft bald head to my cheek and being reminded of when he was an infant.
I don’t even know if I will post this entry. Many people will think it is too sad…too negative…I don’t care, that’s how I feel. Sometimes it is hard because there aren’t many people we can talk to about this and most people probably don’t want to hear about it.
I suppose another reason I am feeling so melancholy tonight is because I just heard about the passing of another one of our cancer buddies. It makes me so angry. How many more children have to be taken by this beast???
Hug your children… Tell them how much you love them…let the little things go…please pray for all those children and families who still suffer from this monster.

Wednesday, September 6, 2006 8:07 AM CDT

Here is Caleb on his 1st day of Preschool! He loves it. This is his second week of school and he can't wait to go. Yesteday , out of the blue, he said "Mommy, I love school!". I look at him and am so amazed at how far he has come in a year. He missed almost a year of "normal life", yet he is still right on track with his peers. We are so proud.

Thanks so much to those of you who have donated to our efforts to raise money to find a cure for leukemia and lymphoma. We appreciate it so much! If you still want to donate, just click on the Light the Night link below.

Saturday, August 12, 2006 7:44 PM CDT

PLEASE KEEP A MEMBER OF THE CARINGBRIDGE FAMILY IN YOUR PRAYERS. BABY DONOVAN HAS BEEN BATTLING CANCER SINCE HE WAS JUST WEEKS OLD AND HAS RELAPSED AGAIN. THIS FAMILY HAS BEEN THROUGH SO MUCH. PLEASE VISIT HIS INK AT...www.caringbridge.org/in/babydonovan
If you are interested in donating to the Leukemia Lymphoma Society Light the Night Walk or becoming a member of our family team please visit
http://www.active.com/donate/ltnSanAn/1906_beatburkitts

Caleb just had his 3 month check-up and is doing well. He has his next blood draw, CT scan, and echocardiogram on November 10. They still want to see him every 3 months. They just want to make sure the cancer does not return. They also check for signs of a secondary leukemia and heart problems since some of the chemo he recieved can cause leukemia or heart failure. Everything looks great and he is very strong!
Thanks for your continued prayers for our family. We appreciate them more than you will ever know.
Stephanie

Sunday, July 9, 2006 1:13 PM CDT

On July 1st at 6:19 pm Caleb became a big brother to Jackson Bramwell Smith. At 36 weeks gestattion he weighed 6 lb 13 oz and was 19 3/4 inches long. Caleb loves to try to make the baby laugh and Abby loves to kiss and cuddle him. Everyone is doing well.

Tuesday, June 27, 2006 3:09 PM CDT

This weekend was Valero Family Day at a nice ranch in Boerne , Texas. It was a huge party put on by the company that Josh works for to thank all of the emplyees and thier families. I just wanted to post pictures of the kids at the party.
The kids had a terrific time! They went on pony rides, fishing, several moon bounces, bubble blowing, a hay ride, lawn bowling...and so many other things! They ate tons of food and took away lots of different prizes. Caleb's favorite part was the pony ride and an Alligator obstacle course/ moon bounce. Abby's was the pony ride and getting to see a goat that was just 2 minutes old at the petting zoo! It was amazing for the kids to see a baby animal still covered in afterbirth ( I can hear some of you saying "GROOOSSS!") Caleb is really into cowboys now, so he loved being at the ranch all day. He wears that cowboy hat everyday and even sleeps with it next to his bed. He says he wants to learn to ride! I am a little suspcious though....Dr. Savage, Caleb's oncologist from John's Hopkins in Baltimore just admited to me that he was from Arizona and his father is a cowboy...he must have put some cowboy potion into Caleb's chemo! HMMMM....
I am now in the middle of the 36th week of pregnancy and dialted 4 cm. The doc says the baby's head has moved really far down and expects me to go into labor this weekend or early next week....we'll see!
We will keep you posted!

Wednesday, June 21, 2006 10:28 AM CDT

This picture was taken almost a year ago. What a difference a year makes. June 2 was his 1 year anniversary of getting his last treatment and on July 15 it will be 1 year since he had his central line removed.
Sometimes it seems like it was years ago, but other times it still feels raw like it just happened yesterday.
He is growing and changing so fast...he is not the same kid he was last year.
If you are interested, there is a special on PBS called "A Lion in the House". It gives insight to what it is like to have a child/ be a child with cancer. It is very true, raw, and sometimes graphic so I wouldn't watch it with your kids. It shows so much of what we and millions of other families have gone through. Our story was not nearly as horrible as some of the familes portayed in this show....we are very lucky. It airs on June 21 and 22 at 9pm on PBS. It is a 2 part series, so watch both nights if you want to see the whole thing. Here is a link to you can find out when it airs in your area.
Just thought you might be interested.
http://www.pbs.org/independentlens/lioninthehouse/00_airdates.htm
Steph

Thursday, June 15, 2006 8:03 AM CDT

Since Father's Day is here I want to take advantage of this journal page and honor the father of my children. Josh is the most amazing father I could hope for for our children. When each of our children were growing inside me, he selected a song just for them. When things became quiet at night, Josh would sing that song to the little person living inside of me. Upon each of their births, he would pick the baby up and the first sound they would hear upon leaving my body was thier father singing the song they have heard for 9 months. To the amazement of the doctors and nurses, they would cease crying and silently stare up at their daddy.
During Caleb's birth, I became exhausted and didn't think I could push that big baby out anymore...I was ready to quit. Josh took my hands and placed them on the baby's crowining head and told me to feel our baby. That gave me the strength to give one more mighty push and bring him into the world.
While in Iraq Josh was very busy, but he always took the time to record short movies and voice clips to send to the kids. They loved watching these day after day and never felt thet they were too far away from their dad. No questions...no complaining ...he was always there.
When Caleb was diagnosed, Josh was the rock we all leaned on. He took many hours away from work so that we could each put in 48 hour shifts to sit by our boy in the hospital. As soon as his shift at the hospital was over, he would put on his shirt and tie, shave in the public restroom, and head back to work so that he could support our family and I wouldn't have to work. I don't know how he did it. Josh was the one who stayed for the procedures I was too weak to face such as holding our son and trying to comfort him while vials of chemotherapy drugs were shot into his spine while he was wide awake. If something happened when Caleb was sick, I would call Josh and his words to me were always "I'm on my way." No questions, no complaining , he was always there.
Now we are here in Texas and life is wonderful all because of Josh's hard work to get our family here. Each time he comes home from work the kids are so excited and shout "DADDY LOOK AT THIS" "LOOK WHAT I MDAE" "LOOK WHAT I CAN DO" "PLAY POWER RANGERS WITH ME" "THROW ME IN THE AIR" "TICKLE ME"....and he does...no questions, no complaining, he is always here.
Happy Father's Day Josh! We love you!

Saturday, May 20, 2006 9:05 AM CDT

Things are all good here.
I have not heard any news about Caleb's current scans or echocardiogram. No news is good news. If anything looked strange or funny, they would call. He is eating like crazy. We went out for Japanese food on Mother's Day and he ate sushi rolls and lots of raw tuna and loved it! He kept asking for more, but we got dessert instead. He ended up eating 2 pieces of cheesecake! Where does he put it all! I signed him up for his new pre-school. He will start in August. 3 half days a week. He was so excited. He wanted to stay and play. I hope he feels the same way when I start dropping him off there. I figured it was good to put him in this program to be with other kids for a year before kindergaten since he basically had very little contact with kids during treatment.
This is Abby's last week of school. She is excited for summer vacation and so am I. This will give us a chance to explore the neighborhood and meet other kids her age at the park and the pool.
This week I will be 31 weeks. The baby is moving like crazy...not just kicking, but turning over and over. It's starting to hurt a little bit. I have an appointment Monday. Soon I will start to go every week.
Oh! We finally closed on our house in Maryland! WOOOHOOOO! Sold!
Caleb's next appointment will be on August 7th.
I will post new pics soon.

Monday, May 8, 2006 1:49 PM CDT

NEW PICTURES!!!!
We have finally moved into our wonderful new house AND we have have a contract on our house in Maryland. I will be keeping my fingers crossed until it is actually sold. I don't want to get excited too early.
Caleb went to his new oncologist last week. We were there 2 days since they wanted to run the whole series of tests...echocardiogram (chemo can damage his heart, but I know it is strong), CT scans of his neck chest, abdomen, and pelvis, and bloodwork. They just wanted to be thorough since this was their first time seeing them. They want to have bloodwork and possibly CT's every three months until they get to know him and his body. I am glad they are so careful, but it is still a reminder that things are not "normal". I shouldn't be scared though because he is so happy, energetic, healthy, and hungry.
I really can't believe our lives have turned around so drastically. Josh is home and safe. He has his dream job. Both of our children are healthy. We have a new baby coming in July. We live in a beautiful new house in a terrific town. I am almost afraid to let this all sink in. We know how quickly things can change. We know how quickly everything you know and have can be taken from you. I feel like I have to hold our good fortune like a tiny fragile egg. I want to cherish it and take care not to let it break. Remember to cherish all the blessing in your life today...don't take it for granted.
I promise to be better at updates and pictures now that we are becoming settled.

Tuesday, April 18, 2006 10:24 AM CDT

We will hopefully be closing on our new house tomorrow and moving in Thursday...but you know how that can go. Still keeping our fingers crossed that our house in Maryland sells very very soon!
We have Caleb's first oncology appointment here on May 1st...this is for bloodwork to check on his counts. I am sure all will be okay. It has almost been 1 year since his last chemo...June 6th!!! The oncs at Hopkins say that 1 year after treatment, we can breathe a little easier.
I love it here in San Antonio, but I miss the community in and around Belvedere. You guys have all meant so much to us...more that you will reall ever realize.
Once we get our home computer set up, I will update with ne pictures!

Friday, March 31, 2006 12:19 AM CST

I know it is a long time between updates, but we will not have much access to the internet until we move into our new home. When we finally get our own computer back, then I can post new pictures too. Must be something in this Texas water...these kids are getting really tall and I am getting bigger and bigger. We should be closing on our newhouse and moving in a couple of weeks! I can't wait!!!
Our house in Maryland has not sold yet, so pray pray pray that it sells soon so we don't have to pay 2 house payments!
Caleb is doing really well and loves his time at home alone with me while Abby is at school and Josh is at work.
I will be getting in touch with his new oncologist soon and hopefully we will only ever need to see them for check-ups.
I can't wait to be able to email all of you back!
Love-Steph

Friday, March 17, 2006 9:38 AM CST

Hello from Texas!
We are all here in San Antonio now...including the dogs. For now we are renting a really beautiful apartment until our house sells. We have 2 houses we really want, but if those 2 sell before ours does, they are bulidning more of the same model in the area.
The kids love it here. There is so much to do outdoors and we have been working on our tans in the pool. This week is cloudy and a little chilly (70's), but it feels good to wear flip-flops everyday.
We have found a new oncologist for Caleb and will meet with them sometime in the next few months. Dr. Savage was great in setting us up with this. There are great cancer cenetrs here in Texas and a huge research facility right in San Antonio.
Abby starts school next week. This week was sprong break in this district. She is so excited about starting all-day K instead of half day. She is most excited about getting to bring her lunch box and eating at school. Funny Girl.
Josh is still pinching himself about getting to fly these jets! He loves it.
I love being able to stay home and take care of my family. It's a nice feeling.
Wish us luck in selling our house.
Our contact info for now is:
13000 Vista Del Norte
Apt. 716
San Antonio, Tx 78216

stephnjosh@smithtutor.com
Hope I can fill you all in soon!

Sunday, February 5, 2006 8:30 AM CST

Please remember to say a little prayer for Caleb on February 8th...it is his 4th birthday...a big deal to us this year...it is also almost his 1 year anniversary for his diagnosis of lymphoma...what a bittersweet time this is. It is hard to explain how I feel right now. I am filled with glee that we get to see him turn 4 and that he is so healthy, but the memories of what we have been through this past year and the fear of relapse enters my mind more often this month as we approach the anniversary of the day he was diagnosed.

WHEW!!!! Where do I start????? We have had another whirlwind of a month...this seems to be the norm for the Smith family for the past 2-3 years. This time we have GREAT NEWS!!!!! Josh has recently accepted a position with Valero Energy Corporation. Some of you might be familiar with their gas stations. Josh will become one of their corporate pilots flying a Lear jet. This has been something he has wanted to do since...uh...BIRTH!He will make enough so that I can stay home a raise the kids (my dream). We are all very excited about this. We have been working toward this since before we got married. This is the whole reason Josh went to Embry Riddle in AZ, worked as a flight instructor, fueled airplanes...basically almost every job where he has been employed was aviation related. He has worked so hard to get this and I am so thrilled that he is finally fulfilling his childhood dream. He says it is like hitting the lottery!
This is all happening really fast. He recieved the job offer on Feb.1. He will be leaving Maryland on Feb 20 to begin his training and house hunting for our family in San Antonio , Tx. For those of you who live close to us, you know we have 3 rooms under construction right now. We are working fast to get these projects finished so that we can sell our house. I depart my teaching position on February 16. It breaks my heart to leave my students, but this is what is good for our family. While Josh is gone, I will be in charge of getting new carpet for the house, flooring for the kitchen, and the painting and cleaning of the house and yard....oh yeah...and work on getting the house sold. The kids and I will fly to Tx the first week of March.
We are excited to live in warm, sunny San Antonio. The kids are very excited. I will miss living so close to my parents, but I am trying to convince them to move to Texas. I hope it's working!
Anyway, that is life for the Smith Family right now....wish us luck!

Thursday, January 12, 2006 5:42 PM CST

Great News!!!!! Everything looked great at Caleb's appointment. Things are looking so good that the docs have ordered Caleb off of all his meds!!! WoooHooo! No Meds! We have been giving the meds 2x a day for the past year and I am having trouble getting used to it...sometimes I will stop in the middle of the day or wake up in the night and think.."Darn it! I forgot to give Caleb his meds"... then I remember No More Meds!!!
They also said that the CT Scan Caleb had this week is his last one ever and now he only needs to be seen in clinic once every 3 months instead of once a month! We are very happy...but still a smal part of my heart is still afraid to be too happy...still scared.
We also had my appointment yesterday. I am only 3 months pregnant, but through the ultrasound we could see that our little baby already looks like a baby. I have been fondly calling it "Little Lemon" since it is now about the size of a lemon.
Please keep praying for all the other families out there who are still on the uphill battle with this disease...there are so many out there.
Thanks for hanging in there with us.
Love,
Steph

Friday, December 30, 2005 7:46 AM CST

Caleb started off the day yesterday with a fever and has not had one since. The docs said ALL of the parents worry like this the first time their kids get a fever after chemo is done...fever is one of the signs of blood cancers, so of course we jump to that conclusion. Really it was just a normal virus. Dr. Savage said to expect to be worried everytime he gets a fever , but that it will get easier...I hope so.
Anyway, he is doing great. His next appointment is on Jan.10th. This includes a blood draw and a CT scan. Josh has to take him to this appointment since I can't go into the CT with him now that I am pregnant. Our next post will probably be after that appointment. Pray for good scans and bloodwork!

Thursday, December 29, 2005 10:28 AM CST

It has been a long time since I have updated. We have been so busy that I didn't even realize how long it has been.
We all had a wonderful holiday. We felt so content to have Josh home from Iraq this year and Caleb healthy. That was really the best gift I could have asked for. The kids had so much fun and it was nice to see that they both really, truly believe in Santa. It was amazing to see the magic in their eyes.
We have had a few scary moments this week with Caleb. On Monday night he threw up for the first time since his treatment. Since then he has not really had a big appetite (I try to keep in mind that as adults, we don't always have an appetite either.) Yesterday he complained of a headache. I took his temp and it was 99.2...not really high, so I didn't worry too much. Last night he woke up crying with a temp of almost 102 and complaining of headache and stomach pains. We gave him ibuprofen hoping it was just a virus or something normal...please just be something normal!!!! I pretty much laid in bed and sobbed all night convinced that he had relapsed, since this is basically how it started when he was diagnosed. I do not normally jump to conclusions, but this disease has made me CRAZY! The docs said that relapse normally occurs 6 months after chemo...guess what, it has been 6 months. Poor Josh...between worrying about Caleb and these pregnancy hormones, I was a mess.
Anyhow, Caleb woke up this morning back to his normal laughing, loud, and boisterous self. I put in a call to the doc anyway and now I am just waiting for a call back.
I know that all the other moms tell me this is completely normal, but I am still scared to death.
I will keep you updated and I am sure the next time I post, it will still be good happy news about our boy!

Sunday, December 4, 2005 9:46 AM CST

Just wanted to give a quick update about Caleb's last appointment.
It went really well. We have not gotten a call about the blood tests, so that means they are normal. They would only call us if something looked strange. The docs felt around his neck and stomach for lymph nodes ann tumors and felt nothing. This is great news! Little Caleb is so brave to go in there every month for blood draws and to be poked and prodded by the docs. They have to push really hard when they feel around his belly, I can tell he is uncomfortable when they do this, but he puts on a brave smile and just gets it over with.
We get a break from his next appointment for the holidays. His next appointment will be on January 10th...this includes blood draws and a full CT scan of his entire upper body. His cancer was considered Stage IV since tumors were found in his lymphnodes, abdominal cavity, around the lungs, and his groin. This is so scary since cancer only goes up to Stage IV. I am constanly amazed at what this child has survived and how close we came to losing him.
More good news....we might be able to take him off of his final meds afetr his January appointment. No more meds!!!! WOOO HOO!
On a funny note...I was laying in bed with Caleb to sing his bedtime songs when I looked over at the wall next to his bed and saw the he had smeared boogers on it. GROSS! I told him that it was dirty and yucky to do that, but he just smiled and said "No Mommy...that's my booger collection! See...there's my Spiderman booger, my racecar booger, my Superman booger....." So gross! The next day I cleaned the wall...a few hours later, his collection was back!

Sunday, November 27, 2005 12:04 AM CST

Hello!
The new picture is of Caleb hanging out with my Dad in his garage. Caleb loves to walk around the garage and "help" with the Corvette and the Hot Rod.
It has been awhile since updates. Never a dull moment around here. We just got back from a Thanksgiving vist with family in Georgia. We had a wonderful time and the kids loved getting to play with grandparents , aunts, and uncles.
Caleb has his monthly check up on Tuesday, November 29th. I am less worried than I usually am, but I am cautios enough to know that anything can happen. I will let you know how he is doing.
Caleb and Abby are both excited about a new brother or sister arriving in July! We are all so excited for this big event.
Please pray for Noelle and Donovan....two babies who have recieved transplants to finally rid their bodies of cancer. I am sure it is difficult for their families to watch their child struggle through this difficult process. In order to have the transplant, these familes have had to leave their jobs and home in order to obtain the medical help they need. It is so expensive to live in and out of the hospital (food, gas, parking) and now they have to maintain their house payment and rent an apartment while away from home.
Please pray for the soldiers away from their families during these holidays.
Please pray that Caleb continues to be healthy and that Josh continues to live here with us and is not sent away to the middle east again.

Thursday, November 3, 2005 5:12 PM CST

It has been awhile since my last update...things have been crazy around here. I left for Arizona to be the Godmother of my best friends 3rd child and when I got home 4 days later we were without a bathroom! Don't even ask...because of some leakage that was covered up when we bought the home we were dealing with black mold, rotting wood, and termites. We now have nothing left of our main bathroom...not even floors or walls. Thank Goddness Josh is handy. A few years ago we would have stressed over this...now it is just a bathroom.
Caleb is doing very very well. At his last appointment his blood counts were all good. The head doc said that this is one of the most beautiful survivor stories he has seen. Caleb has gained 13 pounds since June and is now weighing in at 32 lbs! Way to go Caleb! I will try to post some new pictures soon.

Sunday, October 23, 2005 0:03 AM CDT

Sorry it has been so long since our last update. I am updating from Arizona right now. I am visiting with my best friend and her family. I am going to be her Godmother. It's nice to be back in Arizona.
Caleb is doing really well. Still seems to be growing so fast and he is always so hungry! He will have his monthly appointment on Tuesday so pray that his counts are normal.
When I get home I will post some pictures of his new haircut! We were al so excited to give Caleb a haircut. It has been almost a year since his last haircut...seems like such a small thing to be excited about, but it was kind of a milestone for our family.

Friday, October 7, 2005 6:21 PM CDT

Here is Caleb and our new puppy. We went out last Sunday to the Pumpkin Patch just to buy a pumpkin and instead we ended up getting this puppy! Josh said he couldn't resist when he saw me pick him up and declare "Look! He loves me." Josh said " I'll be right back". When he came back, he had cash in his hand and told me that he was buying me the dog! What a guy!
The puppy is a Jack Russell just like our other dog Daisy. He is now 9 weeks old and only 3.6 lbs. He fits in well with the family and Daisy does not seem to mind him.
I had been looking all over for another Jack Russell, but they are so over-priced. When we saw him and the price they asked for him, we knew it was meant to be. The kids really love him, but he is really a big ol mama's boy. I told Josh that he was the perfect gift to heal my heart and keep me company when Josh is working late and the kids are in bed.
He started out being named PunKin since we got him at the pumpkin patch, but Abby suggested that we name him "Scrappy Bob". We called him Punkin for a few days, but now that his personality is coming out he really is a "Scrappy Bob"...so that's his name...I call him Scraps for short...he is a tiny guy with a big dog heart. He is so funny and playful...just what our family needed!

Wednesday, October 5, 2005 5:24 AM CDT

Whew!!!! Life never slows down around here.
Saturday was the Light The Night Walk. Thank you so much to all those who participated and donated...the particular walk we went on raised $165,000 towards cancer research. Thank you Janie, for walking with us. It meant a lot!
It was so nice to see all the support out there, but it was also very emotional for me. Each walker carried and illuminated red ballon. All the survivors carried a white balloon. It amazed me to see how many people have been touched by leukemia and lymphoma. I kept asking myself...if it is so rare, then why are there so many people here whose lives it has effected???
We met another family whose 4 year old son was treated for the same cancer as Caleb. He is now 6 years old and has been without cancer for 2 years...it was so encouraging to meet him.
Please pray for our friend Adrienne. Last year, right after the homecoming dance, she had extreme pain in her hip and leg. A few days later she was diagnosed with ALL (leukemia). She has been going through treatment for a year, but still has another 1 1/2 years to go. This weekend, she had permission from her docs to go to Homecoming dance and be a "normal" kid for awhile. She was not at the dance for 10 minutes, when someone accidentally ran into her on the dance floor. She fell and broke a bone in her leg and possibly tore a ligament. Her bones have been weakend by steroids and by the cancer that was located in that area. Please pray that she has a smooth recovery from this injury.
I will put in new pictures and add more to this journal tonight... I have to tell you about our new puppy...now, I have to go to work.

Tuesday, September 27, 2005 4:23 PM CDT

Just wanted you to know that Caleb's check-up today was fine. He is such a pro at drinking all of that yucky contrast without complaining and then laying still for that CT scan. I am so proud of him!!! He didn't even cry when they stuck him with the needle today. He has become so brave!
His scans came back clear! WHEW! His blood counts came back pretty normal (low end of normal). His white blood cells came back low, but that will be normal for the first year...so that means his immune system is low for the next year....flu shots for our whole family. The chemo killed his bone marrow (which makes white blood cells) and it take about a year for the bone marrow return to normal.
The docs also told me today that after December (6 months after his last chemo) his chances for relapse greatly decrease. If relapse does occur, it usually happens in the first 6-8 months after chemo. This is not with all cancers, but with Burkiitt's.
Anyway...thanks for checking in on Caleb. Please sign the guestbook to let us know you stopped by.
I will post new pics on Sunday after our LTN walk.
Please keep praying for all the children who still fight this disease every day.
Love-Steph

Saturday, September 24, 2005 1:19 PM CDT

It has been a week since our last update...we have been busy!
What a game that was! Thanks to the Make A Wish foundation and Laurel Gaffney for contacting us and showing us such a good time at the game. We had a ball! The Governer's Box was amazing! The weather was perfect and the kids both had a wonderful time.
On Thursday night we went to see Sesame Street Live! Both kids loved it, but I think Abby is getting "too old" for it. Caleb keeps running around pretending he is Super Grover. Too Funny!
This Tuesday (9/27) Caleb goes for his CT scan of his pelvis, stomach, and chest to make sure there are no little tumors hiding out. He also has his blood draw. It has become a little more difficult since his central line was removed, but we are thankful that we don't have to worry about cleaning it and it getting infected every single day. Now he can be a normal, sweaty , dirty boy!
Please say extra prayers that his scans and blood come back clean. I still worry everyday that cancer will sneak back into our lives, but every month, before his check-ups, I become a little more emotional. I guess it is just another reminder of what can happen. I do worry less and less everyday...especially when I see how he is growing and thriving!
I recently had someone tell me that I needed to move on..."Don't dwell on it"..."Don't think about it" ..."You're just being negative"...(which is funny because I am a very positive person) easier said than done. It's not that I think about it every second of the day...most of the time I don't, but you can't help that it always stays at the back of your mind.
Okay...getting off my soapbox now...I will update more on Tusday to tell you the good news that the scans and blood came back clear!

Saturday, September 17, 2005 3:03 PM CDT

I just wanted to give a big Thanks to everyone who has contributed to our Light the Night fund so far. It really means a lot for us to be able to do this and help other people who are suffering with blood cancers. Our oncs keep telling us that research is so close to finding a treatment that is in the form of a pill and kills the cancer cells and nothing else...no side effects. Chemo is really harsh and kills almost every cell in the patients body before destroying the cancer. That is why they are so prone to infection, have bruising, bloody noses, mucoscitis, and need many blood transfusions. It will be fantastic when nobody has to suffer like this anymore.
Our walk is on October 1st and we are so excited to go.
Many of you have expressed an interest in walking with us. If you want to walk with us, the rules are that you have to register as a walker (easily done online) and raise at least $25.
We have a busy weekend and week planned. Tonight we are going to the county fair. Make a Wish foundation called us and offered us seats in the Governer's Box for the Orioles Game tomorrow afternoon!!! How exciting! Then on Thursday night we are going to see Sesame on Ice. It is so fun to be able to do these things with the kids and see the excitment in their eyes! Caleb seems to be growing and developing by leaps and bounds. It is like he was never sick. I gave all of the diapers away...no diapers anymore, not even at night. I can't wait to see his official weigh in at the doc's this month!
Next Appt: Sept 27th

Saturday, September 17, 2005 3:03 PM CDT

Friday, September 9, 2005 3:09 PM CDT

Hi everyone! Sorry it has been awhile, but we are still getting used to me being a working mom again. We also have Kindergrten and soccer practice. Abby is doing well in both. She is so independent. She wants nothing to do with us when she gets to school. Her teacher describes her as "a character". We all know that is true. I will post some pics of her first day at school and soccer practice tonight.
Caleb is doing so great! He is loving Daycare and learning so much. They do so much learning there and create projects everday. He has been diaper free for about a month now. That is so exciting to us. We figured he'd be potty trained a lot later since he was in the hospital so much.
My neck is much better. It is still stiff, so I will be seeing a neurologist soon. I am hoping they can do someting. I hate not being as active as I usually am.
Please be sure to visit our Light the Night page. http://www.active.com/donate/ltnBaltim/ltnSSmith45
We will be walking on October 1st.
Caleb's next blood tests and CT scans: Sept 27th.

Saturday, September 3, 2005 2:49 PM CDT

Check out the new photos of the game!
Things are going pretty well here. It has been 2 weeks since I have been back at work and the kids have been doing well without me hovering over them all day...they are probably relieved.
Abby starts kindergarten on Tuesday and is so excited. We are excited for her.
Josh has had to be Mr.Mom this week and has been great at it. Earlier in the week I had to be taken to the E.R. I have something called torticollis in my neck...basically it is just a fancy name for a weak neck muscle...no big deal. I wish I could say that I did something exciting to hurt it (rock climbing, snowboarding...) Nope...I just sneezed really hard. It started out as mild pain, but by the middle of the day I could not even move my little finger. The spasms of pain were unbearable. I do not even know how Caleb ever managed all of his pain! He is incredible. I am now in a neck brace, and am taking percocet, 800mg Motrin, and Valium. While at work I only took the Motrin. By the time I got home I needed the stronger drugs and that is when Josh would take over. He is a great husband and Dad!

Friday, August 26, 2005 8:40 AM CDT

Just wanted to let you all know that Caleb's blood counts on Tuesday were EXCELLENT!
I went back to work this week. I knew that Abby would be fine, but I thought Caleb would cry. Not a chance...he has been happy to go spend the day with his daycare friends. Sandy is an amazing daycare provider and gives them lots of love and plenty of fun things to do.
Please check out this link...it is another photo of us on the Redskins website.
http://www.redskins.com/community/communitynews.jsp?id=7319

Promise to get new photos of the game up soon!
Steph

Saturday, August 20, 2005 4:10 PM CDT

What an amzing night it was!!! Standing on the football field with the Redskins, Bengals, Coaches, the Press...and others involved in the NFL is an opportunity we will never have again! We have lots and lots of photos to share, but it will take me some time to get them all on here.
As soon as we got there, we went down to the field. We got to meet a few of the players and the owner of the Redskins. One of the players even played a short game of catch with Caleb and Portis held him!
During the coin toss, Caleb and Abby were not shy. They went right out to the center of the field with thousands of people watching them and shhok hands with the team captains. They were soooo excited! It was not televised, as the sations went to commercial, but they were on the jumbotron!
When the cheerleaders ran out, Josh was sitting on the sidelines with the kids in his lap. One of the cheerleaders ran out of formation and shook her pom-poms on the kids. The kids (and Josh) loved that!
I was amazed at the sheer size of some of the players. I was standing right next to one of the players and my forehead came right up to his hip! His one leg was literally 2 of me!
We were so awe struck by the whole thing we just forgot to ask for many autographs. This will be something we will always remember. We are still on a high from it.
Be on the lookout for more pictures this week as there are 100+ pictures!

I start back to work this week and Caleb has his monthly blood test on Tuesday, so wish us luck that it is all clear!

Love you all!

Monday, August 15, 2005 11:59 AM CDT

Everyone is doing well here...just getting ready to start the school year, kindergarten, soccer practice, a master's degree...ya know....normal stuff!
Just to let you know:
Kickoff for the Redskins game is at 8pm EST. It will be on WUSA and on Comcast Sports center.
YIPEE!

Thursday, August 11, 2005 7:32 AM CDT

We got some very exciting news last night. Dale Heron (a father of my student Rachel from last school year) has arranged for Caleb, Abby, Josh, and I to attend a Redskins football game on Friday, August 19. He did not give me details , but said that there were many special things planned for Caleb that night. I am so excited for these kids...they both deserve it so much. Between their Dad being in Iraq and Caleb's cancer, both kids have been through so much. He also said to make sure all of our family and friends were watching the game that night because you would see us on TV!!!! I was so excited lasy night that I couldn't fall asleep. I have had lots of trouble falling asleep this past couple of years due to worry, but it has been a long time since I have had trouble sleeping due to the excitement of something good! I was so happy to lose sleep from excitement instead of worry.
Thank you Dale!!!!

Friday, August 5, 2005 7:43 AM CDT

I am deeply sorry to say that our friend Chris (Clownfish) that I wrote about below earned her angel wings on Saturday at 11:30pm.

Hi Everybody-
This update today is not about us. We have 3 Caringbridge friends that could use your prayers.
BABY NOELLE:
Baby Noelle is the cutest 15 month old girl ever! She was diagnosed with AML (leukemia) and finished treatment. A few months after being off treatment she relapsed. Her only hope was to receive a Cord Blood Transplant. Her family packed up and moved(temporarily) from Wisconson to North Carolina where a specialist was at Duke. She was able to get her transplant last week. Now they are waiting out the awful side effects and making sure the transfusion is not rejected. They are positive that this will be the new start to Noelle's new cancer free life!
Please keep them in your thoughts.
www.caringbridge.org/wi/noelle

CHRIS (CLOWNFISH):
Chris is a beautiful and strong 25 year old woman. She was diagnosed with an incurable, inoperable stage 4 stomach cancer. She refuses to give up her fight.
In spite of all of the pain she was in with side effects of chemo, fluid in her stomach, and fluid in her lungs, she always finds the time to sign everyone's guestbook and add little animations. Caleb loves the Spiderman one she put in his book. She answers emails and even meets with other Caringbridge friends. I have learned so much about life and strength from Chris. The doctors recently told her that there were no more chemo options for her. This past month has been very physically rough on her. She started a new therapy called "Tomotherapy". I recently discovered that she is now resting at home now and hospice is there...
www.caringbridge.org/wi/clownfish79

Ryan Brown:
Ryan was a handsome and funny 5 year old boy with a brain tumor. He recently earned his angel wings and is no longer in pain. He passed at home in the arms of his parents and had a smile on his face.
His family has been such an inspiration to me. They really lived life to the fullest. Now they need our positive messages to gain strength as they learn to continue to live without Ryan's physical presence.
www.caringbridge.org/ky/ryanbrown

Please leave a message on these Caringbridge guestbooks. When you are going through something like this, a new message from anyone can make your entire day. It helps you know that you are not alone and that people and thinking of you and praying for you.
Thank you so much!
Love-Steph

Friday, July 29, 2005 8:25 AM CDT

Just wanted to update and let you all know that Caleb's appointment this month went well. All of his counts are normal and his lymph nodes and stomach felt normal as well. They were amazed at the level of energy this little guy has. We are too. He sang the Spiderman song to anyone who would listen (the doctors,the nurses, the parents in the playroom) This is very funny because he sings it very loudly and uses wild arm gestures while he sings.
It is very reassuring to hear good news from the docs every month. He had fun seeing all his old doctors and nurses, but hated having to be poked with a needle 2 times for blood draws...still much better than having that Hickman in.
Tonight both kids are spending the night at my parents house. Josh and I are going on a date! WooooHooo...we have not had time alone together in awhile.

I just wanted to thank all of you for making us part of your lives and becoming an important part of your lives. You do not realize how much your support has meant to us this past year. Your emails, guestbook entries, phone calls, cards, and letters helped us through our darkest times. I have saved them all so that one day Caleb can look through them and read about all of the people who love him. You are all an amazing gift to our family.

Monday, July 25, 2005 7:21 AM CDT

Hello everyone. Sorry it has been awhile since our last update. We have been enjoying having time together. Our computer isn't working propely, but as soon as it is, I have new pictures to post.
This past Friday we went to Philly with Josh. He had to configure a corporate jet which only took a few minutes. Afterwards, we were invited onboard. Wow! It was very impressive! Caleb really enjoyed sitting in the cockpit. He was yelling with so much excitement about all of the buttons and lights that the pilots get to push. Abby was a little timid. She thought it was going to take off.
Saturday we met Josh's Uncle John and Aunt Kathy in Virginia for a paper model show. The kids had fun making different items out of paper (churches, ships, airplanes...) I had no idea there were so many things you could make by folding and cutting paper. You can make anything imaginable. We bought plenty of projects for the days it is too hot or rainy to go outside.
Tomorrow (July 26) we have Caleb's monthly appointment. It has been almost 2 months without chemo! I am a little nervous . Since he no longer has his Hickman, they will have to use a needle. It has been a long time since he was poked with a needle. I will update tomorrow to let you know how his blood counts come back.

Friday, July 15, 2005 8:41 PM CDT

Today was the day of Caleb's surgery to have his Hickman removed. He was so great about it. You are required to arrive at the hospital 2 hours before surgery for a pre-op evaluation and meeting. He played happily for 2 hours. Caleb had no complaints until.....the nurse brought out his surgery gown. It was pink with teddy bears all over it!!! He SCREAMED and CRIED "NO WAY!!! I AM NOT A BABY!!!!" Josh and I couldn't help it. We had to laugh. He was very excited about wearing the little blue "shower cap" the docs wear and put it right on his head.
The surgery went well. Caleb was so cranky coming out of anesthisia, but as soon as we left the hospital he was back to his normal self. He was a little sore, but that has not stopped him from running, jumping, and webbing everyone.
We are looking forward to swimming and baths in 7 days. We are already enjoying life without 2 Heparin flushes in his lines every night, saftey pins in his shirt, and worry about him pulling it out by accident.

Wednesday, July 13, 2005 5:16 PM CDT

Just a quick update to let you know that things are going very well. Our days have been very busy and full and we all go to bed exhausted at night. I just found out today that this Friday (July 15th) Caleb will have surgery to remove the Hickman from his chest!!!! YIPEEE!!!! We can't wait!

Wednesday, July 6, 2005 8:20 AM CDT

We had a wonderful 4th of July weekend. On Saturday we went over to the Eastern Shore to have a picnic with my parents and some friends. The kids had a great time running around with Robin (7) and Anthony(3). Those 2 three year old boys were like 2 wild peas in a pod. They got along great. It was great to see Caleb playing with other kids again. We were going to stay for fireworks, but they were both getting cranky and tired so we left. Abby fell asleep before we even got out of the parking lot, but by the time we got home she was awake again and they were both begging for fireworks. We got out the jogging stroller and wlaked over to the college for their annual celebration. It was very impressive. The kids loved it. Caleb was screaming "This makes me sooo happy!!!"
On the 4th we went to my parents for a get together with friends. We were so pleased that Josh's Uncle and Aunt, John and Kathy, were able to make it. Caleb and Abby played Hide n Seek with Kathy. Caleb simply hid his head in his big hat and bent over when it was his turn to hide. He really thought he was well hidden (see photo album), but would give himself away by laughing when he thought we couldn't see him.
We set off some ground works and sparklers and they couldn't get enough.
Hopefully Caleb gets his Hickman removed soon. He is really anxious to head out to the beach and up to Hershey Park. Thankfully everything is within a 2 hour drive!!! I will update again soon and post new pictures frequently!
Please keep our friends Adrienne, Chris, Noelle, and Ryan in your prayers as they continue to fight for their lives.

Friday, July 1, 2005 8:20 AM CDT

Great news! All of Caleb's bloodwork and scans came back clean and normal!!!! Here is how our day went yesterday.
1) CT SCANS:
Before the scan Caleb had to drink a contrast. They try to disguise it to taste like apple juice, but it still tastes pretty horrible. He drank it all with no problem. We told him that it was Spiderman Juice and he sipped it right up. When it was time for the scan, he just laid in the machine as still as can be without crying or talking. He wasn't even scared. This surprised all of us. In the past, Caleb had to be sedated and strapped down to have his scans. We were all so proud of him!
2) Dr. Savage:
1)Caleb now weighs 28 lbs. This is a lot of weight gain. Back in February he went from 30 lbs down to 21 lbs because of the surgeries and chemo. It's great to see that all my time in the kitchen and at the grocery store has paid off.
2) The doc took Caleb off of Fluconazole (anti-fungal). Now he only takes Bactrim (antibiotic) for the next 6-8 months. I am so happy. This was a nice surprise.
3)I jokingly asked if we could have his central line removed early so that he could swim and play in the sprinkler. The doc said YES!!!! He is scheduled for surgery this month to remove the line. This was also a big surprise. It is a huge source of anxiety when he plays outside as he is not allowed to get it wet or dirty...yeah right, he is a wild 3 year old boy! If it gets wet or dirty, it could lead to an infection that goes right to his heart. It has to be cleaned and flushed everynight. The caps and dressing have to be changed once a week. It becomes time consuming. Once the line is out he can even take a real bath!!!!
4) Caleb will continue to have monthly blood draws. Scans will take place every 3 months for the next year. They are very optomistic about his cancer being gone so they are not even going to do bone marrow biopsies and spinal taps anymore. I have mixed emotions about this. The docs said that the 6-8 months after treatment are most critical. If the cancer presents itself again it will typically be in months 6-8. That would be December-February. They said it rarely comes back, but if it did, we would know right away.
5) The side effects from the chemo (to his brain and organs) will not show up for 6 months to a year. We will be aware of this, but are positive that it has not affected him. We know so many kids who go through chemo and continue to be honor students and all-star athletes...just look at Lance Armstrong!
So...that is our good news! I plan on taking lots of pictures this weekend because we have a busy, fun-filled weekend planned. Look for pictures on Tuesday.
Hope everyone has a great 4th of July!

Thursday, June 23, 2005 4:06 PM CDT

My son can evoke the most extreme feelings of happiness, hope, and sadness within me. We were always honest with him about what would happen to his body and what the lymphoma was doing to the inside of his body. We were always postive and upbeat around him and celebrated each round of chemo as we knew it was one step closer to destroying the cancer.
I do not know if it is right or wrong, but we never discussed the possiblity of death in front of him or his sister. It was simply not an option. After treatment we made a big deal about his cancer being gone and he told everyone he saw.
Yesterday he was helping me weed the garden when he paused. He sat in my lap and took my face in his little hands so that they forced me to look him in the eye. He had something important to say. He looked right into my eyes and said "Mommy, my cancer is gone and I didn't die." Then he kissed and hugged me and went right on digging in the dirt.
I took everything in me not to burst out sobbing. I still tear up when I think about it. How does a 3 year old know that when we never told him? I have said it many times, but I will say it again...Caleb is amazing!

Monday, June 20, 2005 8:07 AM CDT

Not much new to report here....that is good news.
The kids had a wonderful weekend with Josh. When they picked me up from the airport everyone was tired. That is a sure sign of a playful weekend.
Caleb is doing well and eating like a linebacker. His next appointment is on June 30th. This will be for blood testing and ct scans of his lungs, belly, and pelvis. This will be done monthly for the next year. Please pray that all the scans stay clear.
I had a great time at the wedding this weekend. Jen and Ross (bride and groom) were beautiful. They are such a sweet and happy couple. I had lots of fun hanging out and dancing with my cousins.
More updates to come!

Wednesday, June 15, 2005 5:10 PM CDT

Many people have been asking me what remission actually means. I appreciate the honesty. I did not know what remission meant until Caleb was diagnosed. I always thought remission meant cured, but it doesn't. A person is not "cured" until the cancer has been in remission for 5 years. Remission means that the body has less than 5% cancer cells, but with blood cancers of this type, it only takes one cancer cell, out of the billions and billions of cells in your body, to multiply and begin the cancer again. It is like cutting down a tree without removing the roots, and the cancer can grow until the "roots" completley die.
With Burkitt's, if it does not come back after a year, then it usually does not come back. About 50% of people do not have a return of Burkitt's in the 1st year and survive. After 5 years, the rate jumps to 80%. The docs are optomistic about Caleb. So are we!
Thank you my Rippling Woods friends for being so welcoming today. I was so excited to see all of you and get those hugs!!! Ms. Ginger...can't wait for that pretzel salad!!!

Tuesday, June 14, 2005 8:14 AM CDT

Not much new to report here....Thank GOD!
Caleb is feeling great. It is so nice to see him with a pink flush to his cheeks...all through treatment he was gray since his blood counts were never allowed to recover to a normal level before starting the next round of chemo.
He has so much energy lately. I have had to increase my workouts and sleep just to keep up with him!!! It's wonderful.
He is eating really well...fish sticks and bbq sauce 3 times a day...sounds gross, but he loves it. His other favorties are my mom's fried rice, pancakes, and apple dippers. Yesterday we actually ate INSIDE McDonalds!!! What a treat that was for both of the kids!
We have lots planned this summer: day trips to close amusement parks (Hershey, King's Dominion), fishing, picnics, boating....no swimming for Caleb yet. We do not feel comfortable traveling far away yet since he is still so fresh out of chemo and has his Hickman in. If he gets a line infection, I want to be close to his hospital.
I am in my cousin Jen's wedding this weekend. I will be in Connecticut for 4 days while Josh is home with the kids...I have never been away from both of them at the same time...not even overnight!!! I am nervous and excited. I am looking forward to some girl-time with my cousins!!!
Please visit the link above. I have formed a Light the Night Walk team. All procedes go to blood cancer research. The walk will take place in October...I hope to see some of you walking with us.. I am excited to be raising money for such a good cause!
See you later!

Saturday, June 11, 2005

Hello everyone! Thanks for checking in...please keep checking in, I will continue to update Caleb's progress as he continues to heal and as he continues to get scans and bloodwork.
He is honestly happier than we have ever seen him. He says hi to everyone he sees and hugs and hugs lots of people.
About 4:45 this morning I was gripped with fear..."waht if it comes back??? What if nothing shows on the scan if it does come back???" If you remember, when Caleb was first diagnosed his bloodwork did not look particularly funny and nothing showed on his scans and ultrasounds. It was only when the did his surgery did they see the tumors. I shouldn't worry since we know what we are looking for now, but I think part of me always will.
Despite some moments of worry, we are very very happy. We LOVE normal. I never thought I would say I love taking my kids to the grocery store and BJ's while they make noise and beg me to buy stuff, but I LOVE it!
Last night we bbq'd and had another normal boring night! LOOOOOOVE IT!
Please keep Noelle, Christopher, Chris, Ryan, and Adrienne in your prayers. These are some of our friends still battling this horrible disease.
Please remember to keep checking in and PLEASE sign the guestbook.

Wednesday, June 8, 2005 7:29 AM CDT
Yesterday was a great day at Clinic. Caleb has his blood tests and all counts came back normal!!! He didn't need any blood transfusions at all. His ANC was right in the middle of the normal range...not too high, not too low. We are not used to this. It has been a long time since we have seen normal counts. He is happy to be free of all IV poles and masks. I love that he does not have to wear a mask in public anymore.
We do not have another doctors appointment for a month! We are used to going 2x a week. At his next appointment we will have scans of his belly and lungs to make sure no cancer has grown back. He will also have an echocardiogram of his heart to make sure the chemo didn't damage it. Keep praying for clean scans.
We can already see eyebrows and hair slowly growing back. Look out for new pictures soon. My Dad made the kids shirts "I kicked Burkitt's Butt" and "I helped my brother beat cancer"....I will post a picture of that soon. Other pictures to look out for "Caleb with Hair", "Caleb with Friends", "Caleb on a field Trip".....and in December"Caleb without a Hickman".
Yesterday after Clinic we went to visit his Daycare friends....who have been so much more like family to us. He was so happy to be there. He hugged Sandy (daycare provider/new family member) and then went to her 16 year old daughter Megan and let her carry and hug him. He will be happy to go over and play more often.
Today the kids are going to play at my Mom and Dad's house. She has cookies and ice cream all ready for them. Lately Caleb likes to eat rice and fish sticks w/ bbq sauce 3 x a day....so Lola (Phillipino for Grandma) has those ready for him too.
All is good here....I want to shout out "My son is in REMISSION" to everyone I see. I am finding it hard to control myself:)

Monday, June 6, 2005 6:47 AM CDT

Caleb was able to come home from the hospital yesterday. He ran all the way down the hospital corridor yelling "I'm winning, I'm winning." When we got to the end of the corridor he held both hands in the air and said "I won I won!!!!" Then he paused with a thoughtful look on his face, and said "No, I'm three, I'm three". He is too funny!!!
We go back tomorrow for count checks. It looks like things are on the upward trend. Hopefully he does not need any blood or platelets. They say we should be able to stop the nightly GCSF by Tuesday!!!!! He would love to not be attached to that IV for 30 minutes a day. We still have to give him several other meds for the next 6-12 months, but that's okay. I pray that the cancer stays away and that there are no complications along the way...sometimes the side-effects from chemo don't show up for years.
Yesterday we alll went to the grocery store together. The kids ran around like wild animals...that used to bother me, but yesterday I did not care. It was great to see the 2 of them running around together and laughing. Afterwards my parents came to visit for awhile and Caleb took a fast ride in the hot-rod with my dad and Josh. We played outside until almost 8pm......ahhhh...it is Heaven on Earth when things are normal. I am happy.

Saturday, June 4, 2005 9:25 AM CDT

Caleb is back in the hospital. We brought him in around midnight last night for a high fever. No other details to report.

Thursday, June 2, 2005 6:42 PM CDT

Today was the last Chemo!!!! They were so nice. They had a shirt that the Docs and nurses signed for Caleb and pillowcases for Abby and Caleb with their names embroidered on them. They also had a cake and sang "Happy end of Chemo to You." I didn't mean to, but I cried.
They did blood counts and Caleb needs to go back tomorrow for a blood transfusion. He also has an ANC of 0 so that means he has no immune system and is very prone to infection/viruses right now. I am praying that he does not get a fever this time. Everytime his ANC is 0 he ends up hospitalized for his fevers, so it looks like we might have one more hospital stay. His ANC will probably remain low for awhile since he got another dose of chemo today.
My friends Wendy and Dave are having a Walk and Party this weekend to support CF research. We were really hoping to attend and support their family, but Caleb is not allowed around lots of people now....Wendy-I PROMISE I will be there next year!!!
We were actually pretty shocked when they said that Caleb needed blood and his ANC was 0 because he is running around like a CRAZY man!!! He is screaming , dancing, laughing, teasing, eating. How many people do you know that can have all that energy when they have almost no red blood cells???? He is AMAZING!!!! What an inspiration....I always think twice before complaining about aches and pains. If our 3 year old can do this, we have nothing to complain about.He teaches me a new lesson everyday!

Wednesday, June 1, 2005 3:58 PM CDT

Tomorrow is Caleb's last chemo. I have lots of mixed feelings about this. I am extremely happy that our little guy will no longer have to endure long hospital stays, vomiting, aches and pains, weight loss, sores in the most private places. He can now begin to grow and play again. He can gain his strength back. He can play and go to school. He can eat a normal diet. He can do anything all his other friends are doing.
On the other hand I am scared to death. I did not expect this reaction. Chemo has been our safety net. It has kept the cancer away. I fear relapse.
Caleb will still have to keep his Hickman in until December. He still has to have many clinic visits this summer. We will continue to have his blood tested once a month for the next year and have bone marrow biposies and spinal taps. The doctors tell us that oncology patients can still feel the pain and side effects of chemo for up to a year and that his immune system will be compromised for at least that long also.....that means I am still the psycho mom in the Target parking lot that you see spraying the shopping cart with Lysol and then giving it a good wipe down with Clorox Wipes. :)
We are so thankful chemo is going to be over. I can't wait to see our boy start to grow.
Please keep checking in and signing our page. I will update again tomorrow after chemo. New pictures are on the way.

Tuesday, May 31, 2005 7:49 AM CDT

Caleb was able to come home on Saturday!!! Josh and Abby came for discharge so the 4 of us could leave his last "official" inpatient stay at the hospital. With any luck we can avoid infection or fever and not have another hospital stay.
He has another appointment this Thursday for his last outpatient chemo treatment. He will keep his central line in his chest until December. In the next 6 months he is still suseptible to fever, low counts,infection, and ,of course, relapse. That is why they keep the line in. It also makes it easier for him to have the monthly blood draws. This summer he will also have more spinal taps and bone marrow biopsies to check for cancer.
Funny, for some reason I thought that the last chemo meant that it was over....really it is just winding down. I think that in December , when we pass the 6 month mark of being chemo free AND get he gets his line removed, then we can all breathe much easier.
Josh is excited about a regular work schedule and I am excited about returning to work in August. This summer I will work on getting Caleb slowly integrated back into a routine of playing with friends and going to Sandy's daycare.
We will keep Caleb's Caringbridge page for the next couple of years. I am sure you want to see how he grows and gets stronger. I can't wait until I can type the words "cancer free" on here. I am not sure if it is 1 year or 5 years being out of treatment when they can declare a person cancer free...but it is awhile.
Be on the lookout for Caleb's new Caringbridge page. They are upgrading so we can give his page a new look. I will send an email update if I get to this.
I can't thank you all enough for the love and support! We are still overwhelmed by the kindness you all have shown us!

Thursday, May 26, 2005 10:21 AM CDT

Still here in the hospital. We will be here until Saturday morning. So far he is tolerating it pretty well. The only side effects he is having is a little vomiting, some minor headaches, and dry peeling skin. He is actually in a some-what good mood.
Josh is home with Abby for the next couple of days. She has kindergarten orientation today. She is excited to go with Daddy.
This morning I found out that Caleb will have to keep his Central line in his chest for about 6 months after treatment because of blood draws and various other reasons. That may make daycare and preschool interesting, but we will figure it out. Kids go to school with Hickmans everyday.
We are in the playroom now and Caleb wants me to go play.

Tuesday, May 24, 2005 5:05 PM CDT

Caleb's chemo/spinal tap went well today. Poor guy was starving when he woke up. As usual, he could not eat the night before the procedure. He did not end up getting his anesthesia until 1pm. When he came out he ate 4 large cookies, a rice crispy treat , and a big cup of juice. Then he ate nearly all of his dinner. Thankfully he wont start feeling the effects of the chemo until sometime tomorrow. This is our last planned inpatient hospital visit.I say planned because we know that he will probably get more fever and infection with this round of chemo and with the next round in 10 days. This is normal for all the oncology patients. We will be at the hospital for the next 4-5 days while Caleb recieves constant chemo.
I apologize to those of you who have called in the last 2 weeks and have not gotten a response. While Caleb is in the hospital we run around like crazy. By the time we settle down at night, we are too tired to talk. This weekend while Caleb was home we spent all of our time doing work outdoors, playing, and going to McDonalds. It felt so good to have a "normal" weekend where we just ran errands, did yard work, watched movies, and ate meals together. We have not had too much time like that since before Josh left for Iraq, so it is really precious when we do get that time together.
Please keep leaving your positive and supportive messages. We love reading them.

Saturday, May 21, 2005 6:52 AM CDT

Caleb was able to come from the hospital last night. HORRRAYYY! The 4 of us were able to sit and eat dinner together...that is something that Josh and I have always considered so important. After that we were able to sit and watch part of Return of the Jedi until the nurse arrived to help us mix and set up his TPN (IV food supplement). It seems pretty easy as long as we stay organized. There are several additives to add to this mixture and lots of careful measuring with syringes. It is a little extra work, but we both feel great relief that he will be getting the extra fat and calories. I do not know how many calories are in the bag , but there are 22 fat grams. I also try to cook high protein and fat for Caleb by adding butter, heavy cream, and cheese to all of his meals.
Caleb will go back into the hospital on Tuesday to be admitted. Over the course of the week he will have his intrathecal methatrextate again (in the spine), IV methatrexate, and cytoxan. For Caleb's type of cancer there are no breaks...as soon as he feels well he gets slammed with another round of chemo. The good news is that this is his last inpatient chemo. 10 days later he will get 1 more outpaitient chemo and then he is finished with chemo. I am sure we will end up in the hospital again for another fever (that is just the pattern Caleb and most kids seem to follow), but I hope not.
After his last Chemo, his central line (to his heart) will stay in 30-60 more days. At home we will still administer G-CSF(whit cell grower) and his TPN through the line until they deem him officially healthy and at a good weight.
For the first month we will go to clinic once a week for blood draws. Somewhere in there he will have a spinal tap and bone marrow biposy to check for cancer growth. In July or August, he will have another surgery to remove his central line. For the 1st year, we will go to clinic once a month for blood draws and check -up. The next year it is once every 3 months. The third year we will go every 6 months, and after that he will go once a year for the rest of his life.
OOPS. Kids are up...gotta go.

Friday, May 20, 2005 9:02 AM CDT

Josh is the type of guy who only says something when he thinks it is important. I was very touched by his last journal entry. I never realized it until he pointed out, but we do have lots of singing and hugs in our house everyday.
Great news. The docs have removed all IV antibiotics from Caleb and he will be discharged tonight if he does not get another fever. They have to wait for 24 hours after being off antibiotics. He is still getting nutrition through his hickman. He is eating fairly well, but we want his weight up. He went in at about 34 lbs and now weighs 24 lbs...at times he was smaller. We will continue adminstering this at home each night. It is a large bag of milky colored fluids filled with lots of fat, calories, protein, vitamins, minerals, calcium, and Xantac. We simply hook it up to his IV pump at night before he sleeps, hook it up to the tubes in his chest, and let it run for 12 hours. When he awakens in the morning. we remove the IV and flush his Hickman with Heparin, an anti-clotting agent. If this does not start to help put the weight on him, they will also give him an oral apetite stimulant to take at home.
He has not been vomiting that much lately, but after Chemo he eats very little. His little body uses up every single calorie to try to replenish the blood cells that the chemo constantly kills and his body simply can't keep up.
We are denfinately not alone in this. There are so many other families on the oncology floor like us who suffer through fevers and pain and do crazy medical procedures at home every night and day. When I look at the problems these other families face, I feel so fortunate. Some of these children have rare blood diseases that will requre them to recieve chemo for life. Many of these children undergo massive radiation and bone marrow transplants.
I have formed close freindships with some of the other mothers on the floor. We joke about how this is a private club you never wanted to join. We have only known these people for a few months, but when when we see each other we hug like we have known each other for our entire lives. It is good to have other parents to talk to who have the same feelings....makes me feel a little less crazy and a little more grounded.
Of Course, the support and messages we get from all of you is AMAZING! We could not go throught this without all of you.

Wednesday, May 19, 2005 2:10 AM EDT

This afternoon Calebs fever cycle finally broke. He has lost 2 pounds between Sunday and today. He received his fourth blood transfusion for this cycle. Three since Friday. We were very worried. The CT scans and chest x-rays on Sunday did not reveal any blaten infections. The bloodwork did not produce any reproduceable cultures either. He was in constant fever condition when not on Tylenol. Oxycodone (Narcotic)was being used to minimize his pain...mainly headache and stomach. He was also on two broadspectrum antibiotics both of which were most likely caused his stomach pain and frequent diareha. He is receiving nutrition supplements in his direct line (direct to his heart that is)...to be push out to the rest of his body.
Unfortunately, we do not have a definate answer to what may have caused this episode. Although there are plenty of hypotheses. Regardless of the hypotheses here is a general idea...for you doctors out there there is probably some correction in detail required ... I have tried to keep it only layman terms.

Fevers in patients with a lowered ability to produce blood cells can be a viscous cycle. Chemical (CHEMO) Therapies in their very design inhibit or stunt rapidly dividing cells. Bone Marrow and blood cells are rapidly dividing. Consequenlty, a CHEMO patients ability to produce blood cells is comprimised. We administer a Drug labeled GCSF to help Caleb's bone marrow recover from the CHEMO treatments. During fever (infection) conditions, the a body uses blood cells in an effort to fight off the infection. Used cells are processed out as waste. In comparison, a flashlight battery will dim when when left on. In a flashlight, when the switch circuit is closed energy is being used. If the battery is not connected to a recharger that can push energy back in (eg a battery charger, generator, or alternator) the bulb will begin to dim. During fever conditions Calebs circuit is closed. The recharging source (marrow) is insufficient. Movement of the extremities and other functions that require energy dim. The blood transfussions are a supplemental energy recharging source. The vicious cycle occurs when the fever is consuming his blood (energy) at a rate which requires frequent transfussions.

Caleb is so amazing.

He's poked, proded, and general made feel a specimen of discussion. During which he makes it very clear through developed speech that he does not like it. I say "amazing" in that after his fits of discomfort and anxiety he resolves to total forgiveness of Steph and I for ever having participated in the actions causing discomfort.

We try to think of ways of explaining and examples to lessen his anxiety. Which sometimes work. There's the temperature probe that gets stuck under his arm during vitals check...lately every hour or every 15 minutes if he's recieving a blood transfussion. The Temperature probe is now a three stage rocket ship which blasts off after the chime indicating completion. The blood pressure cuff has now become one of his biggest anxiety. Tuesday I tried to show him the cuff squeezing daddys arm...our 13 yr. old neighbor chimed in and showed Caleb his cuff as well. After a 10 minute demonstration all of which time Caleb sat in silence...just watching us...I was thinking OK another break through...Caleb calmly admitted aloud "Not Caleb's turn." We all chuckled including the Nurses. Caleb is so amazing.

Caleb knows what love is.

I implemented two actions for my children one I started before thier birth and the other as soon as they were born. Both have a dramatic effect on the way they handle thier fear and anxiety.

First before they were born a sang a song to them while in the womb. Abby's is "Mamma Don't Let Your Babies Grow Up to be Cowgirls"...Caleb's is "Green Eyes and Freckles beneath a White Cowboy Hat." When I am home to tuck them in they always...always get thier song. When Abby was born...as soon as she was extracted from the womb she was crying. The doctors handed her to me...umbilical just severed...I sang her her song as I held her, she immediately stopped crying, and starred at me with her beautiful brown eyes. The delivery room fell silent as others starred as well. Caleb was comforted the same way. A parents voice has a way of soothing. It is a very powerful tool and if used as such can have amazing results.

Second, is a very simple action and requires no memorization...hugs. My family is well known for our ability to hug. Sincerely Hug. When we hug it is not a light embrace. Since birth we have hugged and taught our children how to hug. This works especially well in times of anxiety, discomfort, disagreement, and fits of disorderly conduct I simply whisper in thier ear or talk in a very calm patient manner (even though sometimes it is difficult) "Put your arms around my neck and squeeze really hard." It is wonderous for them and for me... They quiet down. It is a genuine way of saying no matter how bad it gets or how scared you feel...I'll always love you. Caleb responds very well to this method. After whispering in his ear or asking him queitly "Put your arms around my neck and squeeze really hard." Caleb says in an almost immediately calmed voice whispering back in my ear or saying quietly "OK Daddy." His arms are around my neck and squeezing tight. He knows what a hug is suppose to feel like... Caleb knows what love is.
Josh

Wednesday, May 18, 2005 9:38 AM CDT

Caleb is still running a fever and has severe headaches today. They gave him more RBC's yesterday. That's the 3rd bag of blood since Friday. Today he will be getting more plateletes and a nutritional bag of IV fluid(protein, fat, calories, vitamins, calcium...) to help him gain weight. There is also talk of giving him an apetite stimulant to help him feel more hungry. Thank you for your words of encouragement. They mean so much to us.

Tuesday, May 17, 2005 7:09 AM CDT

Still no news on Caleb. He is still in lots of pain and is still running a high fever. It got to the point where they started packing ice packs around him to keep him cool. They want to run more blood tests because they thought the first set of numbers looked "funny". Keep you all posted.

Monday, May 16, 2005 7:52 AM CDT

They looked at all of Caleb's tests and everything seems to be fine. They said that the cat scans look "pretty" normal and that there is no inflammation. They still have not gotten the results on the blood cultures back. Overnight he got another blood transfusion. He will be home as soon as his temp is normal and when he has a normal ANC...possibly Wednesday. His fever is still high and does not want to come down, but I am sure it will soon.
Please check out the new photos on his photo page.
I want to again say thank you for all of your support. Espescially when I start to freak out! Thanks for all of your great guestbook entries. We love reading them.

Sunday, May 15, 2005 2:08 PM CDT

We ended up having to go back to the hospital today. Caleb is neutropenic and had a 101.5 temp. They admit the peds. Oncology patients when the temp is over 100.5.
Josh is with him now and I am home with Abby...I wish I could be both places at once. They are performing tests to see what is causing the fever. He has also been complaining about his belly hurting the past few days. He is going to get a CT Scan of his belly and chest. The belly pain scares me because this is how it all started. They want to do the CT scan to make sure the tumors have not returned. I am scared to death and pray that the cancer is not growing back. We will keep you posted.

Friday, May 13, 2005 6:09 PM CDT

Well, it's 7pm and we just returned from the hospital. Caleb needed a platlete and a blood transfusion. He is tired, but in a much better mood now. As we left the hospital, he ran down the hallway webbing people and saying "Watch out peoples". His ANC (infection fighting ability) is only 15. The norm is 1500-8500. When he reaches 0, he is considered neutopenic and must be admitted. They expect that he will need to be admitted again sometime this weekend...oh well. Good thing we have my parents here and lots of friends who can watch Abby in the middle of the night if need be. We will keep you all informed.
Thank you for all of your wonderful messages. Please keep them coming. The whole family loves reading them!

Thursday, May 12, 2005 12:42 AM CDT

As you all know, Josh and I have been very positive since Caleb's diagnosis. Many of you have said to me "I can't imagine what you guys are going through ... feeling... thinking...". When I first started this web page I vowed that I would only write about positive and happy things. I was not going to write this, but felt that I should. I was worried that if I wrote this, I would be judged as being negative, but I know that you all love us and would never see us in that light. My intent for writing this is not to make you feel sad or sorry for us...I would never want that. It is simply to give you some idea of what it is like to have a child with an illness.
Any of you out there who have been through anything similar can relate.
Another mother of a child with cancer came up with this analogy.
Imagine that you are looking out your living room window and you see your child sitting in the middle of the street. You see a car speeding towards your child. You cannot get out of your house, you can't open the windows. You yell and yell for your child to get out of the way, but he can't hear you. You have no choice but to sit and watch as the car comes towards your child. Some days the car slows down. Some days you can forget about the car for awhile and sit on your couch and relax...but something always happens to remind you that the car is racing towards your child. Everyday you wonder whether or not the car is going to hit your child or swerve around him. There is nothing you can do but leave it up to God. If the car swerves around him, you always wonder if another car will come along. This is what it is like to have a child with an illness. I hope this makes sense. Everynight when we tuck Caleb into bed we thank God for another day with him...but part of me always wonders if we will have another day.
I know that there will be people out there who tell me not to think like this, but this is the reality we face. Like I said, I am not being negative, just realistic. We are positive that Caleb will live a long and healthy life, but there are always times when we feel like the analogy described above. Please do not judge us for feeling like this, I am just trying to share what it feels like.
Thanks for listening, Steph

Monday, May 9, 2005 6:22 PM CDT

Caleb was able to come home on Mother's Day...YIPEEE! He is doing fairly well. Right now at home he is taking 5 meds 2x a day and then at night he sits for 30 minutes while he gets an IV of GCSF (helps to grow the white blood cells).
He is having some vomiting, headaches, backaches, and has developed a nasty cough....but he still handles it amazingly well. All he asks is that we hold him when he is feeling bad. He is so amazing.
Thank you all again for your amazing support of our family. Without you this would be so much harder.

Saturday, May 7, 2005 9:03 AM CDT

Caleb is still in the hospital and will hopefully be returning home tomorrow afternoon. He has to finish the infusion of the chemo he is on today and the be observed for 12 hours. The drip finishes at 10 pm tonight. This week he recieved a intrathecal methatrexate (into the spine), a 24 hour methatrexate I.V., and 2 huge ARA-C syringes into his I.V., and a 48 hour drip of ARA -C. This ARA C makes him feel so terrible. He has severe head aches and backaches, high fever,vomiting, and depression. The doctors have given him steriods, Zofran, benadryl, and oxycodone. Those things help him feel so much better. I love modern medicine...when I think that just a few years ago they could not prevent these side effects. Whew!

Thursday, May 5, 2005 8:42 AM CDT

We are here in the hospital today. Caleb tolerated his Intrathecal methatrexate well yesterday and had a great day. Last night was a little rough since we need to have a urine sample every 2 hours and vitals taken, but other than that we are doing okay. Caleb is getting his IV chemo as we speak and is starting to become cranky and lose his apetite, but this will pass. We are hoping to be home on Saturday or Sunday.

Saturday, April 30, 2005 9:39 AM CDT

Speechless! That was my reaction to the Fundraiser last night. For those of you who really know me, you know that I am never speechless. The gym, cafeteria, and hallway were filled with people. Just seeing the amount of people who came humbled Josh and I to tears. We are so fortunate to live in such a wonderful community.
All of the gift basket items and raffle items were donated by students, parents, and local businesses. Sodas were donated by a local grocery store. Everyone had a good time and it was so wonderful to see the people of the community getting together and having fun. I feel like this was also a terrific learning opportunity for all of the students at Belvedere School to learn about empathy and giving. Not one student was untouched. I would love to continue this tradition every year for various causes or families in our community hit with hardships.
Wendy West, a friend and teacher, was the master-mind of all of this. When she said people wanted to help out, I thought it would be a few home-cooked meals and picking up milk for us at the grocery store. We were more than Thankful for that. We had no idea that it would be something of this maganatude. I do not know how Wendy does it...she is a full time teacher, a mother of 2 (one of her children has Cystic Fibrosis), and very active with fund raisers for CF. Zetta Hart and Kim Stewart were also a huge part of this event...they helped organize, make flyers, and run all over town getting donations. All of the teachers of Belevedere were a wonderful help with this too. They helped to collect items, put the baskets together, and worked extra hours at the school selling tickets, drinks,pizza, and setting up the entire event. There are so many people to thank I do not even know where to start. Words cannot express how thankful, humbled, and blessed we feel.
Of all the things that touched me last night, one thing touched my heart the most. A group of my third graders handed me a small brown bag filled with coins and bills. They had all gotten together to create a play for Caleb. They put the play on in a neighborhood park and invited all of the kids in the community. They charged 25 cents a ticket and raised over $11. They raised it so that it can help pay for Calebs medicine. I will remember that for the rest of my life. I have never felt anything touch my heart like that. What special children I have in my class!
My brother, Duane, held another special event last night in Michigan. He has been working for over 2 months getting news articles printed, flyers, banners, and a DJ. He had an event in a local club for Caleb's fund. That means so much to me that my little brother would work so hard and do something like this for us. Thank you Duane. We love you so much! I hope you enjoyed yourself and I can't wait to hear how it went.

Friday, April 29, 2005 9:25 AM CDT

Caleb has had a really great week. We went for his clinic appointment yesterday and it went great! This was the first time he has been to clinic and not needed blood or platelets. All of his levels are good!All within normal range. His hair that was growing back is falling out again leaving his head soft and shiny. I have always had a thing for bald men! When I was 5 I was in love with Kojak. He looks so sweet with his bald head and when I see pictures of him with hair it looks wierd to me.
Next Tuesday he gets his intense chemo treatment. It starts out with chemo meds being injected directly into his spinal fluid. After that he is hooked up to an IV for about 5 days with constant chemo. We are getting nervous since htis is the same one that made him so sick the last time. Hopefully now that he is stronger it wont affect him as much.
Tonight my school is holding a silent auction/pizza dinner in Caleb's name. There are over 500 RSVP's so far. It has gotten has gotten so big that they have had to split the pizza orders between 2 Dominos stores. I can't believe the outpouring from our community.So many people have donated so many wonderful items for the auction. We can't express how blessed and humbled we feel right now. I am so excited ( and a little nervous) about attending the event and speaking in front of all of those people.

Monday, April 25, 2005 1:15 PM CDT

Caleb was able to come home today. All of his blood counts are on the rise, his appetite is back, and he is feeling good. All of his cultures came back negative so they think it was just a general "infection". A few days of strong antibiotics and fluids and now he is back to normal. We have an appointment Thursday for a check-up and then next Tuesday he will begin another very heavy round of Chemo.

Sunday, April 24, 2005 9:57 AM CDT

Caleb is still in the hospital but is feeling better. Josh says he is eating everything in sight. There was an article on him in today's Capital. Here is the link if you want to read it online:
http://www.hometownannapolis.com/cgi-bin/read/2005/04_24-43/CBN

Saturday, April 23, 2005 9:04 AM CDT

Caleb had his Vincritine and blood transfusion yesterday. He did really well in the hospital. We left there at 5pm and by the time we got home at 6pm he was in a lot of pain, coughing, vomiting and had a fever of 100.6. When their temp goes over 100.3 they like to have them back in the hospital. We gave him a strong pain medicine, but the pain did not go away. By the time we got back to the hospital his fever was close to 103. They drew blood, took unrine, and took cultures of his throat and nose, but we have not heard anything yet, but know we will be in the hospital through the weekend at least.I am so happy he had a week of feeling well before this. He was finally put into a room at 3am. Josh stayed with him and I came home. Abby stayed the night with my parents. She is such a little trooper. She was excited to go. Today I am surprising her with a Mommy/Abby day out together. I will update when I hear more.

Thursday, April 21, 2005 8:24 AM CDT

Caleb is still having a wonderful week! He is in a great mood, energetic, and eating lots and lots of food. His favorite food was scrambled eggs, but this week all he wants to eat is salad with Italian dressing.
Tomorrow Caleb is going in for Vincristine (another chemo), but it is outpatient so it should be quick. He is even getting used to the 5-8 meds a day and the IV meds at night.
Check out the photo album. I have added 2 new photos taken this week.
I also added a story from another mother to Caleb's home page.
I just want to thank everyone again for the tremendous love, support, and prayers. We would not be able to do this without every one of you. Please keep siging the guestbook as much as you want. It is the highlight of our day to see your wonderful messages. They keep us positive and uplifted.

Monday, April 18, 2005 7:35 AM CDT

Caleb was able to come home yesterday! He had a wonderful day and was more like himself than he has been since before he was diagnosed. He was actually running all over the house and yard. We haven't seen him run since February. Seeing him so happy and energetic made us so happy. If he does not get a fever or cold he will not have to go back to the hospital until Friday for chemo!!! He is sleeping in today. I am hoping he feels good for a few more days.

Friday, April 15, 2005 2:20 PM CDT

The steroids worked!!! Caleb is pain free today and has a pretty good appetite. He is very cranky, but I really can't blame him. They started the next treatment of chemo yesterday afternoon and will continue it until Saturday around 6pm....so we should be home by tomorrow evening!!!! Lets pray he does not spike a fever or anything that would delay his being home again.
Abby is having a fun weekend. My parents took her to visit family in Connecticut. She is going in my place for my cousins wedding shower. She will have so much fun! She loves to be with the big girls.
I will sign now before Caleb wakes from his nap and finds me gone.

Thursday, April 14, 2005 6:15 PM CDT

The doctors determined that Caleb had swelling around his spinal column and swelling on his brain. This was the cause of the headaches and vomiting. They have given him a steroid and a narcotic and he seems to be doing much better. He even asked if I could buy him some chips and dip! He is such a funny kid.

Thursday, April 14, 2005 8:31 AM CDT

Caleb was healthy enough to start his new treatment yesterday. He went in at 9am to have Intrathecal methotrexate (via the spine). He was supposed to start more chemo today through Saturday (Cytoxan and Vincristine), but has hit a bump in the road. Last night he spiked a high fever that won't go down. They now have him on a strong antibiotic. He is also experiencing severe headaches and vomiting. They are going to do some testing today. I am hoping it is nothing big. I am worried about a spinal leak. Anyway, they are going to delay the rest of the chemo until his fever is down, so that puts him in the hospital a little longer than we thought.

Tuesday, April 12, 2005 10:17 AM CDT

YIPEEE!!!! Caleb has been home since the Friday before Easter. In this past few weeks he has had platelets and 2 blood transfusions. This weekend his counts were high enough that were were able to go to McDonalds, the park, and the Baltimore Zoo. We are still trying to get used to the stares and the "Poor Little Baby" comments when people see our little guy with his bald head and mask.
We have been playing outside in the yard all weekend. It feels wonderful. We are so happy to see him laugh a play.
This Wednesday Caleb will be back in the hospital for more chemo. This will be a 4-5 day stay. He will be recieving intrathecal methatrexate (through the spine), IV methatrexate, and vincristine. The vincristine gives him severe leg pain, numbness in his limbs, and trouble walking. We are so thankful he is doing so well this week and able to run and play. His appetite is so good he has gained 2 pounds back!!!! WOOOHOOO!

Monday, April 11, 2005 11:14 AM CDT

Monday, April 11, 2005 10:36 AM CDT

Caleb has always been a healthy and active boy so we did not worry when he came down with a "stomach virus" on Feb.14, 2005. The vomiting went away, but his stomach grew and hardened at an alarming rate. Within a week he looked like he was 9 months pregnant. We took him to our pediatrician who suggested it was an intussesption.This is a condition in which the bowel turns in on itself. She said it should go away on it's own a to return in a week. The next day Caleb was very weak and in constant pain. We took him to the local E.R. They were very concerned and sent us to John's Hopkins.
Still believeing it was an intussesption, a procedure was performed to correct it. he problem was not corrected. After many more CT Scans and ultrasounds, they decided to perform surgery to correct this problem. When the surgeon opened Caleb, she discovered several hard masses throughout his entire digestive system. She took several biopsies and sent them to the pathology lab. This was a Saturday evening. By Monday morning he was diagnosed with Burkitt's Lymphoma, a rare cancer that can double in size in 12 hours and regenerate itself within 36 hours.
Wednesday morning he had another surgery to place a cathader in his chest(Hickman, a bone-marrow biopsy, a spinal tap, and his first chemo treatment. Since then he has had many agressive treatments, long hospital stays, and many blood transfusions.
His prognosis is very good and they say that he should be finished with his treatments by the end of July. We are very lucky. Caleb will only be dealing with this for about 6 months and we know many others who will be recieving treatment for 3 years.
We feel truly blessed for all of our family and friends.The support has been tremendous. Without all of you this journey would be much more difficult. You keep us positive and uplifted. We wish we could thank all of you individually. We love you all.

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