Sunday, May 23, 2010

Thanks and Prayers


CJ is really excited about the contest! (see below post if you don't know about it) It has been a lot of fun this week watching him get excited about something. We spend a lot of time working on behalf of other kids and their families that are battling this disease so this has been a lot of fun to focus on something for him! It was also a great distraction for him all week as the day of chemo drew near and his anxiety was beginning to build. He did well at his appointment considering it is not something he really looks forward to.

He had to fast for his spinal tap and intrathecal infusion of chemo directly into the spine which he was put to sleep for. Then he had the chemo through the port (Vincristine) when he woke up. This chemo is extremely strong and is very important to be sure it goes directly into the vein. Ever since I learned it could literally eat his flesh away if even a drop spilled on him I find myself extremely nervous when it goes in. Thankfully, CJ has the best nurse in the world and we are so grateful God placed her in our lives to see us through this journey.

CJ had more side effects this time than usual. He had the itchy face he usually has to deal with, and this time he was really not feeling well at all after chemo. He was dizzy and his stomach was upset a lot. Then he could not sleep and therefore mom and dad could not sleep. So after a long day Friday of chemo and no sleep that night, Saturday was a very tiring for all of us and a day of recovering for him. By today he seemed more like himself again.

After chemo was completed, he began a round of steroids to help him rebuild and he is already daydreaming about food. Today in church I looked down at his notes and noticed he had drawn a pizza, a hotdog, and a burger on the paper. I had to laugh at that evidence that the steroids are kicking in! We still laugh about the early days of treatment when he was first on the steroids and he would get caught watching the cooking channel!

A few questions have been raised about the contest about how many times you can vote. The contest says two different things. In the official rules it says "One vote per day per person" and on the main page it says "One vote per day per user". Some people misunderstood and voted multiple times a day because the site allowed them to. We recommend every person votes once per day per person per email address. Some have asked if a family shares an email address can they all vote from it. I honestly don't know the answer. I assume they have a way to weed out the votes that are repetitive so just keep voting! The voting last until this coming Sunday, May 30th at midnight. Please vote once each day for him and spread the word.


As a follow up to the previous post, so far he still has his hair! I have noticed some falling out again but not like before so I am not sure if he is losing it completely again. It doesn't seem that way but we are aware of kids who did lose it again spontaneously towards the end of treatment so who knows!

Please continue to pray for CJ's healing!

We can not end this update without asking you to pray for some other special kids that are heavy on our hearts lately.

Ellie Potvin is a special little girl whose family is in the thick of the battle to save their daughter from this terrible disease. She has been removed from any forms of curative chemo as it has all failed to cure her and the family is on a quest to save her with alternative care. Please pray for God to heal this little girl. Please uplift this family in your prayers. Ellie is a twin sister to Grace.

I also ask that you pray for Truman. Truman is a 9 year old boy nearing the end of a year of intense treatment which included heavy doses of chemotherapy, hospital stays, and the loss of his leg and some of his hearing in his battle against this terrible disease. Please pray that he can reach this milestone and all scans will be clear at the end of treatment!! Please pray as he adjusts to life after cancer without his leg. We are super excited that we have been able to step in and make this little boys dream come true when his Make a Wish was recently denied. He will be coming to South Florida in June for CBC to make his wish come true through our friends and corporate partners at the Miami Seaquarium. You can read about it on his blog at the above link with his name.

There are so many kids I could list to ask you to pray for. I know some of you already follow the caring bridge pages of other kids. For those that don't or only know CJ's story, please know these kids are amazing and unfortunately, numerous, which is why we are doing what we are doing through the non-profit we founded Children Battling Cancer, Inc. (CBC). These kids are battling this disease and losing limbs and lives to it. It is heart breaking to follow a child's battle for months or a year and then watch as they pass away. I don't know what the answers are or how to stop this. I only know how to do what we can to help the families during the battle, assist them with their needs, comfort them in their losses, and add whatever joy to their lives it is in our ability to.

Thank you to all of you who have supported our family and showed us what it looks like to care for hurting families so we are now able to do the same for others.



Friday, May 14, 2010

"I'm Okay With It" and PLEASE VOTE!!!!!!


CJ approached me a couple nights ago and said in a serious voice, "Mom, I need to tell you something, and I don't want you to be upset because I have thought about it and I am okay with it." I could not imagine what he was about to tell me, but he proceeded with, "I think my hair is falling out again."

That was not what I expected, but it was very cute. I told him I was okay with it too and actually miss his cute bald head sometimes. He told me there was a lot of hair in the bathtub and showed me how his hair was coming off in his hands.

This wasn't a complete surprise because we knew that it was possible for this to happen. We know of a few children who lost their hair towards the end of treatment for no apparent reason. It is not like there was an adjustment or increase in meds, but somehow it still all fell out again. I explained to him that if it did, it would grow back again just like it did last time.

Later that night, I realized that he had been wearing a batting helmet because his friend Adam took him to the batting cages to hit for a while. So I encouraged him that maybe it is not falling out after all and it is just from wearing the batting helmet. Whichever it is, CJ has assured me he is "okay with it." This attitude really demonstrates the growth he has had in this hole process of battling cancer. He has come so far and gained so much strength.

On that note, I have to share with you that CJ's secret to his strength in overcoming fear in battling cancer was entered into a contest and we just found out that he has been selected as one of three finalists!!!! However, the first place winner will be chosen by YOU! From May 17th to May 30th voting will be open to the public at www.Powerfulkidcare.org. The contestant with the most votes at the end will win. You can vote for him once EVERYDAY and we need all the votes we can get so we are asking you to please do this for him and to please share this with family and friends so they will vote for CJ!

I can share with you that CJ is super excited about this contest. He really wants to win and that can only happen if you help him do it. So PLEASE go to www.powerfulkidcare.org for just a minute everyday from Monday, May 17th to the following Sunday, May 30th. Leave it open on your browser so you won't forget or put a sticky on your computer to help you remember!

I know there are many readers out there so if you could please drop a comment and let us know you will vote and keep voting we would really appreciate it.

CJ is preparing an email that he wants to send out from him personally so if you would like to be included in that email can you please leave your email address in the comment and we will add it to his email when it goes out.

THANK YOU in advance for your votes and also for your prayers.

***CJ has chemo, intrathecal, and a spinal tap on Friday May 21st. Please don't forget to pray for him.******