Saturday, June 12, 2010

After a week off chemo due to low blood counts, CJ's counts still have not come back up. We went in on Friday for his follow up visit fully expecting them to be much higher, but were surprised to discover they were even lower.

Many have asked me to explain what this means and how CJ is feeling. One of the blood counts that are closely monitored throughout his treatment are called ANC (Absolute Neutrophil Count) This is calculated by combining different levels in his blood especially his white blood cells. Chemotherapy tears down the bad cancer cells and destroys them which is a good thing. Unfortunately, it can not differentiate between good cells and bad cells so it tears down and destroys good cells in the process. The white blood cells are your bodies ability to fight infection so if they are low you are at higher risk for infection. And if they are really low you have no ability to fight off infection so you are at high risk for complications due to an infection.

When red blood cells are low you can often see this because a person will feel and appear weak, may become pale and may even have a slower heart rate. When this happens a blood transfusion can quickly help the body recover. However, unlike the red blood cells which nourish your body and feed your blood, the white do not have the same physical effect. The white don't have any those symptoms or signs. And without monitoring them, we would probably not even realize this was happening. That is one reason it is so important for him to go in and get his cbc's monitored continually.

So physically, CJ feels fine. Emotionally, it takes a toll on him and he was very disappointed this week when he found out his counts were low. He knew it meant he was home bound again for another week at least and this is frustrating for him. So when the call came from the doctor, he cried and struggled with his emotions.

To cheer him up his dad took him to his grandma Paula's house while he did some work there for her. CJ got to hang out with Poppa Enzo who is also battling an aggressive cancer. Poppa said the two of them are in the 'same boat' so he knew how CJ felt. I still can't believe my son and his grandfather are both fighting cancer together.

When CJ came home his mood was much improved. Then a call came from our neighbor who offered to take CJ to the park to hit and field some balls. In the past, Chris and I would have said no way with his counts being low but we knew he would be outdoors and this would really cheer him up. So we let him go. He was so excited he jumped up and down and squealed, "Yes!" When he got back he was pretty wiped out but he said felt good. Later he thanked me for letting him go. He knows it is a sacrifice for us because our first reaction is to protect him. There have been many things he has not been able to do for the sake of getting better and fighting this disease. But I am discovering that sometimes you have to protect their hearts as much (and sometimes even more) than their physical bodies. This was one of those times!

Speaking of special times, CJ had a surprise visit this week we would love to share with you. Stanley Panther, the mascot from the Florida Panthers, knocked on our door early this week and surprised CJ with some great gifts including, a personalized jersey, autographed hockey stick, signed puck, hats, shirts and lot of other goodies. Needless to say, this was a wonderful blessing to our family. The blessing is not only because of the great gifts they bestowed on CJ, but mainly of what it means to us that these people would take the time to come over the home of a young boy and cheer him up. You could see the joy they got out of serving and blessing our family. It really was a huge blessing and joyful time for CJ while stuck at home.

This generosity came about because the corporate breakfast CJ spoke at last week was hosted by the CEO of the Florida Panthers. Some of the Panther's corporate team was there and they were touched by CJ's story as well as his sacrifice to be there even while he was sick all morning. (see last blog post). The Florida Panthers recently lost a very dear member of their corporate team to Lymphoma. It is always a potent reminder that my son is battling a disease that claims lives relentlessly.

We want to extend a huge thank you to the Florida Panthers for their willingness to use their resources to encourage and bless others. They are making a difference in the lives of people battling this disease. The stepped up and became the Corporate Sponsors for the Leukemia and Lymphoma Society to help fund research for a cure.

CJ will continue this week mainly home-bound and still holding off his daily chemo. We need his counts to come up so he can go through with his chemotherapy scheduled for Friday morning. Friday evening is the long awaited Childhood Cancer Benefit Concert being hosted by Music4Miracles! We did not realize it would fall on a chemo day but CJ is the guest of honor and the song which was written especially for him will be released, so he needs to attend. Many of our CBC families will be there. If you are a local family with a child battling cancer you are welcome to attend as our guests. You will not need to buy tickets at the door.

However, for all of you who have purchased tickets and for all who do come and buy them at the door...Thank you! Your support is so appreciated! We expect the concert to be beautiful and a wonderful evening. There are some amazing singers, dancers, musicians, and aerial artists coming together, who are all donating their time and talent to make this happen. We are so grateful to Kristi Huddleston of for all her effort in putting this concert together. She has not only become a partner in this war against childhood cancer but she has become a dear friend and sister in the Lord for whom I am so grateful. We would strongly encourage you to attend this amazing event. It would make a memorable family event or date night! You can get all the details on our Events page or at the Music4Miracles website.

Please pray for CJ's counts to come up and for his protection from infection during this time while he is immune suppressed. He has his promotion ceremony tomorrow evening. He is graduating from the 5th grade and entering his first year of middle school next year. We have to decide whether to take him to this ceremony and how to handle the exposure. Decisions..decisions. I would love to see him walk across the stage and stand there and receive his certificate. I can not tell you how those little milestones affect me now. I always flash back to the day I was in the hospital finding out he had and aggressive Stage 3 cancer. I did not even allow myself to think of birthdays or graduation ceremonies. The thought of what might never be would instantly bring me to tears. Now, as I reach them, they bring me to tears of joy as I am so thankful to be able to witness CJ reach these milestones in his life. I can only be grateful for however many God allows us to experience.

Yet, even as I rejoice for CJ, my heart will always ache sorely and privately for the families whose children are no longer here because this disease ended their young lives. They will never experience these precious milestones with their children. Even so, I am all too aware that they have reached the Ultimate stand in the Lord's presence and worship at his throne! That is what I am raising CJ for. Not for birthdays, not for graduations, not for weddings....Oh yes, all that is special and I will cherish every single milestone the Lord grants me here on earth, but I am raising him for Heaven! That is the ultimate goal! But for now, I am so grateful for a 5th grade graduation to middle school! Thank you Lord!


Janet S. said...

CJ, wow, it's special that the Florida Panther mascot came to visit you at home. Great pictures.
We are praying that your counts come up so you can continue with your scheduled chemo on Friday. We are looking forward to Friday night's concert too!
Praying for you, CJ!
the Sedanos

Anonymous said...

What great pictures!! What an amazing surprise! Somehow those little thing happen just when you need them the most! Congratulations on your graduation CJ!!! Wish we could go to the concert. PLease post CJ's song Dawn, cant wait to hear it. We are praying for you all and have you always in our hearts.

Nicole, Ana, Alberto

Anonymous said...

I have been so looking foward to hearing CJ's song! Will there be a way for those of us out of town to hear it or buy it after the concert?? We're are praying for CJ and I hope his counts come up soon, and we pray for his protection in the meanwhile! We love you all! Aunt Karen

Anonymous said...

Congratulations on putting in the VERY hard work for CC this past year (especially essentials) and for getting promoted tonight! It is so great to see you on stage with Annika and Brandon. Your fight for faith gives me such perspective on the little things in life that I get too worked up over, thanks for your example of faith my friend! We love you,
The Schmatjens

Nan Jones said...

Still praying and asking God to touch you and heal you for His glory!

Anonymous said...

You had a panther in your house! Too cool! Did the graduation already happen?? I will be collecting the money today for the concert tickets and call you after 1pm to tell you how it goes! I pray that his counts are up by Friday. I hate that he has to get that chemo the day of the concert or at all. But, he is so strong and poweful. He amazes me.