Thursday, June 17, 2010

CJ still has low blood counts. We went in for chemotherapy today and he was able to get his Vincristine push through his port. We started him on a regimen of steroids but they are still holding all other chemo medications he usually takes daily at home until he rebounds a little more. The Vincristine will probably lower them a bit more and the steroids will help boost them. It really is a wicked cycle.

He was not looking forward to chemo (not as if I expect him to be) but some days are better than others. I can always see the struggle creep in the night before and work its way to the morning. He gets frustrated. If dad and I discuss times or how we are going to plan for the day he gets aggravated. I wish you could see the dynamics involved in the home of a family dealing with this. I am sure all families handle it differently but I would think overall we all try the same tactics at different times. We have had to be firm with CJ, we have had to be very gentle, we have had to be serious and put the facts on the table. We have had to just be patient and pray. We have done it all. The newest one is humor. When CJ gets frustrated,Chris (CJ's dad) uses humor to distract him and cheer him up. I will try to smother him with kisses and tell him how I can't wait for the time alone with him at his appointment. He is already frustrated when we are doing this but it throws him off and eventually he will get the giggles. But it is not the happy giggles. They are the kind you have when you feel like crying and you just laugh instead of crying. They are his "crying giggles." After his fit of crying giggles, I went to bed praying for God's grace to cover him and that he would wake with a refreshed spirit. CJ snuggled in at the foot of my bed.....a sure sign he is struggling emotionally.

When morning came....he moved slow. It was hard to get him up, hard to get the emla numbing creme on his port, hard to get him moving, hard to get him to the car. It was even hard to get his blood to drip from his fingers to fill the three tubes the nurse needed. But once he saw his nurses he cheered up. He did great with the port access and the chemo so that was a blessing! His nurses are so great at distracting him and talking up a storm while they are working. They keep him so busy trying to keep up with them and all their silly chatter that he does not realize they are already accessing him. Nothing beats a great nurse! I will say it again and again....they can make or break your experience.

The reason we changed his chemo to a Thursday instead of our usual Friday appointments is because tomorrow is a big day for us! We have a little boy named Truman who is an osteosarcoma survivor who is just finishing a long year of intense chemotherapy and recovering from an above the knee amputation, coming to South Florida from Tulsa to complete his wish. We are humbled, honored, and amazed that our non-profit organization is able to fulfill this little boys wish when other large wish organizations could not. His wish happened to be to meet and interact with an Orca. One of CBC's corporate partners is Miami Seaquarium., so we asked them if they would be willing to grant this little amazing guy his wish. And they said YES! Can you believe it? I am still amazed! His family flew here for the weekend to meet Lolita , the Orca and swim with the dolphins at Miami Seaquarium. We are so grateful we could be a part of making this boys wish come true after all he has been through. That happens tomorrow morning and we are praying about whether to take CJ s our family has been invited to attend as well and watch. If he is doing well we will be there!

On top of that excitement, the long awaited Childhood Cancer Benefit Concert being hosted by the non-profit organization Music4Miracles is tomorrow night. Our organization (CBC) has been selected as one of the recipients of the proceeds of the event and the song written for CJ by M4M founder Kristi Huddleston is going to finally be released and debuted! We are so excited for this event. It has been over a year in the making. What started off as a birthday present to CJ from Kristi has grown into something to benefit all children battling cancer and we are so grateful to be a part of it. If you are coming, you won't be disappointed. (we got a sneak peak at was awesome!) And you can still get tickets at the door. Go to the above website for all the information.

So we have a busy day coming and are leaning on God for strength for CJ, grace for me as I speak at the event, protection against infection or over exposure for CJ, and just unity for our family as we keep our focus on HIM! We realize none of this is possible apart from Him. May it all be for His glory!

Please continue to lift up CJ's Poppa Enzo in prayer as he battles cancer. Like CJ, he has good days and bad days. He is struggling emotionally and physically. All we can do is be there for him, support him, meet his needs, pray, and wait.

For those that are new to the blog: Note: The non-proift organization our family founded is called Children Battling Cancer, Inc. (CBC) for short. The initials are a reminder to pray for the kids battling cancer as they are constantly monitoring their cbc's. a/k/a (Complete Blood Counts)

*All proceeds raised through CBC go directly to support (other) families with children battling cancer. All family outings and trips are provided in full by our corporate partners. Everything we do at CBC is for the glory of God! Thank you to everyone who has made donations or supported the chemo bag awareness fund-raiser or other CBC events!


Martha Rivero said...


No doubts, I am so happy for everything CBC is doing for these families, it is amazing!!!! I will continue pray for you, your family, all the children and their family, and your ministry that is true blessing!!!!!!!

Your sister in Christ,


Janet S. said...

We are looking forward to the concert tomorrow night!
CJ, we're praying for you.
the Sedanos

Amber said...

wow the concert is tomorrow...aheheh...! Well hah i am still praying for you guys and love you always! See you at the concert! ;P

Nan said...

I am asking God for an extra measure of grace for CJ and for you and the family. I can only imagine how difficult this must be for each of you. I am learning that God's Light is definitely in the darkness. When we hide under the shadow of His wing, the darkness is but His shadow, near to His heart. I take great comfort in this knowledge and I pray that He will give you and CJ that same understanding. God's presence is strong and is surely with you. You have included Him in your pain and for that He is honored.

Bless you!
Nan Jones

Anonymous said...

I really hope you guys get to go be part of the orcha, dolphin experience for this little boy whose wish you made come true. The kids would love that. Will this family be going to the concert event tonight??? See you all tonight. We are so excited for tonight!



Anonymous said...

H1 Dawn,

It is wonderful what you all have accomplished in such short time! We are all so proud of you. I just wanted you to know that last month I nominated you for the CNN Hero award. In a time when most people center on themselves all of you center on everybody around you... Even if nothing comes out of this I think you should know that this is how you are all perceived!
We are praying for you and hope the event tonight is a huge success!

Nicole Ana Alberto

Anonymous said...

How was the concert???

Billy Long said...

Dawn, I have just been catching up reading through your recent posts. Please give my congratulations to CJ on the big win. Also give my love to your whole family. CJ and your family remain in my daily prayers.
And by the way, very good writing in your posts.
Hello to all.
Bless you,
Billy Long