Port Removal...

Dr. Miller’s office from Cook’s Pediatric Surgery called and scheduled Payton’s port removal surgery for Tuesday, October 7th. Hopefully this is the final port that Payton will ever need in his lifetime. We are thrilled to be able to get this out of the way.

Potty Training Days...

We have been trying to potty train Payton now for 6 months. Since Payton finished with treatment he has shown little desire. We have tried every bribery trick from treats, money, to hot wheel cars. This past week Chad started talking to Payton about how Speed Racer goes on the big boy potty. We went out and bought him some speed racer underwear and wow, I think that did the trick. Payton has gone 3 days now without having an accident. Payton has had us all cracking up this weekend as he has carried around his pack of speed racer underwear and has been telling us Speed Racer and Trixie go on the big boy potty. Hey, whatever works, right? If I recall Chad is the one that actually got Savannah potty trained as well. Savannah was easy to potty train compared to this kid. Hopefully we are there with it and he will continue to do well.

I hate to brag, but this is my journal, so I guess I can. I am so thrilled with how Payton is looking these days. His little legs are filling out so nice, I think they are about the size of Savannah's now. His face is looking good. I seriously could not be more thrilled. I am so grateful to see him recovering so nicely and very grateful to not be seeing any side effects yet (keeping our fingers crossed). I have waited for over a year to get to this point. We have so much to be grateful for.

Childhood Cancer Awareness Month Big Picture - Boston.com

I found this article from The Boston Globe that has a cute picture of our little buddy Julian (picture #14). It ripped my heart apart looking at the pictures. I hate to see another child or family suffer. I have spent so much time thinking about these families this month and my heart goes out to them.

(I couldn't get the link to work, so you'll have to copy and paste it.)


http://www.boston.com/bigpicture/2008/09/childhood_cancer_awareness_mon.html

Childhood Cancer Awareness

September is Childhood Cancer Awareness Month

Being a mom of a child diagnosed with cancer I didn't want to let the month slip away without bringing some awarness.

I found this neat article written by Helen Jonsen on September 12, 2008.

http://www.forbes.com/opinions/2008/09/11/pediatric-cancer-philanthropy-oped-cx_hj_0912jonsen.html

Childhood Cancer Facts

Today, despite amazing research progress Cancer is still the number one killer of children by disease. It is the second leading cause of all childhood deaths exceeded only by accidents.

Each year over 12,400 children are diagnosed with cancer

One in 330 children will develop cancer before the age of 20.

On average, 46 children are diagnosed with cancer every day in the United States.

3 of 5 survivors will develop another cancer, chronic or life threatening illness before they are adults. (this one really scares me.)

Every year cancer kills 3000 children more than asthma, diabetes, cystic fibrosis, congenital anomalies, and pediatric AIDS combined.

Only about 20% of adults with cancer show evidence that the disease has spread to distant sites on the body at diagnosis yet 80% of children are diagnosed with advanced disease.

In the past 20 years only one new cancer drug has been approved for pediatric use.

The incidence of childhood cancer is increasing. The cause of this is unknown.

Pediatric funding is nominal in comparison to other more publicized diseases such as pediatric AIDS, juvenile diabetes, or adult cancers.

Only 3 % of the budget from the National Cancer Institute goes towards Pediatric Cancer research. (That's 3 % for ALL kinds of Pediatric Cancers combined!)

The cause of most childhood cancers in unknown.

Approximately 70% of children with cancer participate in research trials compared to only 3% of adult cancer patients. As a result, many of the advances in adult cancer treatments are due to breakthroughs in childhood cancer research.

The government recently CUT the budget for Childhood Cancer research.

As a nation, we spend $14 BILLION per year on the space program, but only $35 MILLION on childhood cancer research per year.

The symbol for childhood cancer is the gold ribbon.Please help increase the awareness of childhood cancer. Childhood cancer needs more funding and better treatment options.

Many children will have to deal with the permanent side effect of cancer treatment for the rest of their life, and way to many parents suffer the tragic loss of their precious children to cancer.

As a mom of little Payton there is nothing I wouldn't do to give him a chance at life.

Please join us this September in acknowledging not just Payton but all these kids for their braveness and courage.

If you get a chance follow the link below to advocate for increased funding for pediatric cancer.

To the world you may be one person

But to one person

You may be the world!

http://capwiz.com/curesearch/officials/congress

Hooray fall is finally here…

I absolutely love that fall is in the air. I love the cool evenings, crisp mornings and love that my kids can finally spend some time outdoors. I love that it’s the year 2008. I remember this time last year and remember feeling so stressed out. Now I just feel so at peace being able to enjoy the wonderful season approaching.

I love how fall brings remembrance of wonderful memories of the past. I look forward to my first cup of hot chocolate, wrapping myself up in a blanket, and sitting in front of the fire place. I look forward to going to the pumpkin patch with my kids and picking out pumpkins. Living in Texas this is the time of year that we wait for.

Throughout our trial with Payton it has given me such a great appreciation for the small, simplest things in my life. I used to be on edge and always had to be on the go and now I find myself feeling such peace in my life, enjoying spending time at home whether its cooking dinner, making cookies with the kids, listening to Savannah read or snuggling, playing or just talking with the kids. I am grateful that I have finally reached this point in my life. I am going to enjoy every moment of this wonderful season.

6 month after treatment H/O Clinic Appointment

Today was our 6 month after treatment H/O clinic appointment. All I have to do is walk into the clinic and hear the IV poles beeping to bring back such horrible memories. We met with Dr. Bowman, every time I see this guy I just want to jump up and hug him, he is so great. Dr. Bowman was thrilled with the results of Payton’s scans and said that he is looking so good. Payton can now go off all his meds, and can now meet with his regular pediatrician to get caught up on all of his immunizations. He also said it’s time to go ahead and remove Payton’s port, hooray for that! I will contact Dr. Black or Dr. Miller on Monday to set up a date for port removal. Other than the port removal Payton is done with H/O appointments for 3 months. Payton’s next CT scan/MRI is on December 11th and December 12th is his 9 month after treatment checkup. This will be the longest period of time that we will be away from the clinic/hospital. What a great feeling!

Payton's MRI and CAT scan results...

Wow…what an exhausting and painful day waiting to hear the results of Payton’s MRI and CAT scan. I finally received a call at 2:10 p.m. with great news; Both Payton’s MRI and CAT scan came up clean with no areas of concern whatsoever. Hoorah, what a relief!!! I am so grateful that everything looks fine, what a blessing. Thanks to everyone for your prayers and words of concern.

Life skills and lessons

My sister referred me to another blog where she got a cute idea. I jumped at the idea since I am always looking for ways to 1) help my kids learn their responsibility at home, and 2) looking for ways to improve my kids behavior. It’s my hope and goal throughout this challenge to help my kids realize that we are a team and it takes each of us to contribute to a household. As my kids are growing up, I want them to know that we live in a society in which we all have to take part for making our home successful. I am grateful for a husband that realizes that I work outside the house as well and shows my children by example that he is willing to take on some responsibilities to keep our house afloat.

I got the idea from a blogger named Jill. Jill had attended a wedding shower where the bride-to-be was clueless in the kitchen. She told stories of microwaving aluminum take-out containers and burning pop tarts. She was given baking racks for a shower gift and did not know what they were used for. Jill felt strongly that she “needed to vow and step-up the ways and the things she’s teaching her kids”, so she found this idea from another blogger and was motivated to start it with her own family. I also felt like it was time to kick-it-up a notch with my family so we decided to take it on as a challenge.


It’s time to start…We have stepped-it-up with the chores we do in our home. Savannah is definitely able to take on added responsibility and Payton will learn over time. I have been amazed at how motivated the kids have been with a little incentive.

Time to get this house under control… Savannah has her regular responsibilities, like cleaning up her toys and her room. The idea was to write some new jobs on Popsicle sticks, place them in a bag and have the kids each randomly draw one each day. I believe that these should be age appropriate for your kids and the responsibilities you want your kids to learn.

Chores…Savannah did her first load of laundry; she learned how to sort colors from whites, the water temperature to wash the clothes in, how much soap to load, as well as how to properly fold the clothes.


Savannah learning to do laundry.

Payton dusting (his head). He gets most marbles for his behavior.

Here’s the incentive… The kids get a clear marble for each day’s job and a green marble for playing nicely with each other. Savannah is also one that wants to go the extra mile, so I have told her that if she does an extra good job with her chore then she can earn an extra marble. They also get 3 marbles (or this lady used a bottle cap) if anyone compliments them to me (i.e. friends, parents, teachers etc.) This is important to me since I want my kids to know the importance of being nice in and outside the home.

Savannah decided to save for a couple weeks to earn the crocodile webkinz.

Payton has earned some cars, bugs and candy

Redemption time… Sunday Night is pay out time. I put together a basket with everything from candy, toys, books, and even coupons for dates out with Dad or Mom to get ice cream. Each item in the basket has a price attached to it. Some of the items in the basket could take several weeks to purchase, so there might be weeks that they don’t pick anything if they want to save up. It also motivates them to work harder if they know what they are working towards. I liked the idea of the basket since I can always find good deals on items, and hopefully a night out for ice cream with Chad or myself will be fun for the kids. Chad and I have noticed a huge difference is Savannah's behavior over the past two weeks.

The kids can also lose marbles by bad behavior or if they choose not to do their jobs. So far it’s worked out to be a great system for us.

I really believe it’s just about finding whatever works with your family. Every kid is so different. (Thanks for referring this great idea jenn and jill for blogging about it.)

A long weekend waiting...

While Payton was undergoing his chemotherapy treatment I often questioned if we were hitting him too hard and I wondered if he would make it through his treatment because of the intensity of it. Now I look at the percentages of relapse for unfavorable histology and know why Dr. Bowman did what he did. I am so grateful for him and feel that he really made the best decision. The odds are horrible if Payton’s cancer were to ever return because of his unfavorable histology, I won’t even go there. I just know that all we can do is look forward and know that we did everything possible and leave the rest in the Lord’s hands. Why is this so hard to do?? My stomach has been turning and my head has been spinning all weekend. I’m ready for some results, Monday cannot come soon enough.

Payton is recovering from yesterday. His voice sounds hoarse from the breathing tube and he’s been cross but we are glad the day is over.

6 month after treatment CT scan and MRI

What a completely crazy and exhausting day. Payton’s CT scan and MRI were scheduled today, with his CT scan due to begin at 1:00. At 1:00 we received word that one of the two CT scan machines was having problems and that it would be a while. Finally, just before 4:00 we were called back. I have to hand to it Payton, he did remarkably well not being able to eat all day. I was the one that took Payton back to be put under and he had fallen asleep in my arms. When they woke Payton to access his port, he put up his bottom lip and as tears starting flowing down his face he said “where’s my daddy?” It’s horrible watching him go through the process of being put under anesthesia. I just couldn’t stop thinking of how proud I was of Payton for being so brave. After 3-1/2 hours, we finally got to see him. I can’t believe that the MRI took 3 hours to complete. It took Payton about an hour to wake up from the anesthesia. After being at Cooks for just over 9 hours we were exhausted. Needless to say, we won’t receive any results until Monday since they started the CT scan and MRI so late. It’s going to be a long weekend waiting to hear. We are all so exhausted and I have to work first thing in the morning, so I’m heading to bed. Thanks so much to Lisa for taking Savannah today; we couldn’t have done it without her.

Playing with gloves

Trying to come out of anesthesia

Payton's 1st Day of Preschool!

Ok, this is such a great day! Payton’s 1st day of Preschool, am I sad? No, not at all, I’m thrilled. I remember several moths ago Becki asking me if Payton would be able to attend preschool and I had to reply that I was not sure. I hoped that he would make it through all the chemo and radiation and hoped more than anything that I would see the day he could go. It was so wonderful seeing him there and I loved every minute of it. Payton was so eager to be going that he literally ran across the street (yes, how convenient is that being across the street?) and he was as excited as he could be. What a great accomplishment. We made it to preschool, hooray.

Payton has his Cousin Ella in his class as well as Geoffrey and Nick from church. I can’t remember the names of the other two girls in his class. He was so excited to be with the cute kids.

Labor Day!

It dawned on me today what we were doing last Labor day. We were in between chemo treatments and were exhausted since we had been tied to the hospital all summer. We decided to get away for the afternoon and drive to Fossil Rim. We stopped at a gas station to get ice for our cooler. It felt so exciting to be getting away out of town even if it was only for a few hours. I remember thinking to myself that I wanted to get in the car and drive far away and never come back. I remember thinking at that point that this would never end. Wow, what a difference a year makes.

Today we were actually quite content just to be at home. We made a quick trip to Fry’s to get a replacement piece for my laptop and afterwards, we were all ready to go home. Chad took the day off and we never are all off together, we are all exhausted from playing tag (switching off the kids) that it actually just felt good to have us all home for a day.