Wednesday, April 15, 2009

Sudden Halt


Thankfully CJ's blood counts maintained long enough to allow us to have his party. He had a blast and we continued to celebrate well into the next week. CJ got to attend church on his actual birthday on Sunday and we went out to dinner with family that night.

The celebration continued Monday as we used the Marlins tickets we were presented with at his party. We had a blast at the game. Our friends arranged for a special birthday surprise for CJ while we were there. Billy the Marlin came to our seats and called out CJ's name and announced his birthday to all those sitting in our section. Everyone joined in singing to him and Billy the Marlin gave him a bag of goodies for his birthday. He had no clue and was thoroughly surprised and thankful.

The party continued as we spent the beginning of the week playing in the backyard with cousins who came into town for CJ's party. We did the Resurrection Eggs with our cousins and neighbors and CJ assisted his little cousin in collecting the special eggs and seeing the gospel story come alive through the contents inside. I think CJ really enjoys seeing someone hear about Jesus in a new way for the first time. I am not sure who lights up more, him or the one hearing it.

To really get into spring break we even let CJ swim in the the neighbors pool and hit in the batting cage next door. This was a huge treat for him. I have never seen a kid so excited to be in the water splashing around. You would think it had been years since he was allowed in the pool. He loved the freedom he was experiencing and he took full advantage of it. He had airsoft wars, built forts, played backyard baseball, and had home-run derbies.

As the week winded down we took in our tanned and happy kid for what should have been a quick appointment on Friday for blood counts. Our fast paced week came to a sudden halt when reality hit with blood results notifying us that he was borderline neutropenic, which basically means his counts were extremely low and he is at a high risk for infection if exposed. So everything came to a sudden stand still and reality set in rather quickly. Explain to a kid who has been outside playing all week and feels fine that he has to suddenly stay inside and be extra cautious. Even harder, explain to the little brother that because the neighborhood kids are back in school this week he can no longer play with his little friends next door. And on top of all that, explain to the mommy (that would be me) who has finally felt a little like things were settling in, that we must reel everything we let out tightly back in again.

My brain accepted the results but my heart was disappointed and resisting the fact that CJ would be unable to attend church on Easter Sunday. That was difficult for me because this is one of those days I cherish being together with my family in God's presence to celebrate corporately. We did still attend the Easter family dinner at grandmas house but it was tense for Chris and me both. It is constantly on our minds that his counts are low. We notice and calculate every touch from well meaning family and friends. We hear every cough and sneeze as if magnified by a thousand times over a loud speaker. We try to act normal but it is always in the back of our minds that he is still at great risk. Sometimes I wonder if all the tension Chris and I feel during moments like that permeates to everybody present. It definitely bounces between us like electricity. I watch his face and read the tension and worry there and I wonder if he watches mine. I was tempted to be disappointed that the great week we just had would end this way.

Before I allowed my disappointment to sink in and react with negativity, God gave me a fresh perspective. I realized what a blessing it had been that CJ's counts were down this Friday and not the previous one. Had they been down the last week we never would have been able to have his party and the great week of celebrating and enjoying family and friends over Spring Break. And had they not come down at all we may have let our guard down a little too far ahead of schedule. So thank you God for the freedom to enjoy those many blessings without worry. Thank you that you guarded us temporarily from the knowledge of CJ's risk so we could enjoy his birthday week in freedom. And thank you also for the wisdom to reel us back in when we need reeling in.

In reaction to CJ' s counts being so low, we are beginning the dance of adjusting medications until we find the right cocktail for him to be at a therapeutic, yet less risky level. CJ will go back in this Friday (April 17th) for counts to see if the modifications made are working and follow up with any further adjustments necessary as well as an appointment the following Friday (April 24th) for chemo and a spinal tap. Please pray he is ready both physically and spiritually for that when it comes.

Please pray that his counts will come back up soon and pray that during the time that he is this low he will be free from exposure to infection. Obviously, had we know he was so low we never would have exposed him all week at the level we did. Where our knowledge falls short, I pray God's omniscient knowledge will cover our lack. Please continue to pray adamantly for protection of CJ's organs after long term exposure to these medications. I was recently reminded of a young cancer patient who survived cancer only to succumb to heart failure from all the medications. This is where it takes GREAT FAITH on our part to administer these meds to CJ repeatedly believing they are part of the healing and not the harming. Continue to stand with us. We have come far but have so far to still go.



CJ's Thank You!

Although, I am pretty adamant about my kids doing thank you cards for their birthdays and blessings, due to the nature of the size of CJ's party I know it would be too much for his little hands. I though it would be best, and ask for your understanding, so that CJ may thank everyone corporately through the blog.

Here is CJ's thank you in his own words...

Dear Friends and Family,
I want to thank you all for attending my birthday party. I had such a good time and you all made it very special. I met new people who have been praying for me, I saw old friends and friends I haven't seen in a long time. Even though my parents always tell me there are lots of people praying for me, seeing all of you at the party showed me how many people there are praying for me. I felt very grateful.
I had fun playing with my friends and I enjoyed opening all the cards that night. I read every single one. It was amazing how many cards there were. Thank you for coming and for the gifts you gave me. I had such a fun week before we found out my counts were low and it all started with my party!
Love, CJ

11 comments:

Janet S said...

CJ, God is so good. We all got to celebrate your birthday with you and rejoice with you in how far He has brought you and how well you are doing. We are so thankful for His protection as you spent so much time with so many different people throughout your birthweek. Yes, you had one wonderful day after another of fun in the sun with family and friends who love you. Let's not forget a tan for your birthday...I think we all got a tan at the party. Best of all you and your family were able to worship with your family-in-Christ on your actual birthday, giving thanks to the Lord together.

Dawn, may we always see past the bad news to the good news and the Good News as you have done not just today, but through this journey your family is on. Thank you for your reminder to be thankful in all things.
1Thessalonians 5:18
Give thanks in all circumstances, for this is God's will for you in Christ Jesus.
Philippians 4:6
Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God.

We are continuously praying for protection and healing for you, CJ.
Love,
The Sedanos

Anonymous said...

Dear Dawn,

We are so grateful that as you said CJ was able to have a very special birthday week. The pictures are great. CJ you still have that sunshine smile!! Wish we could have been there! We are praying for his counts and his strength. CJ that was a beautiful thank you note you wrote!!

Lots of love, Nicole Ana Alberto

Mario S said...

CJ, Your walk with the Lord has truly been an inspiring testimony for me. As I watched you at your B-Day party, I was filled with such joy seeing you enjoy yourself with friends and family. God is always there at your side because you have been faithful to Him. By His grace you have overcome so much and the Lord will continue to see you through this journey in your life.
Chris and Dawn, thank you for always caring for others.
Thank you, Lord, for this Godly family.

Mario S

Anonymous said...

Be encouraged in the Lord. He is faithful, ever present, all knowing and most of all loving. He knows what we need and when we need it. Sometimes it may not be in the form we think it should be or may be that we don't even think it should be at all. God loves us so much. We are praying for all of you. Wishing we could have been there for the party. Love you and thank you again for sharing so much.
Love and Prayers,

Mary B. and Family

Enzo said...

CJ said it was the best birthday he ever had. It was the best day I ever had too. I was so so filled with happiness for him. He deserved it so very much. I still am so grateful for everyone showing up and all the extra surprises that were arranged for CJ. When he got to go in the pool he said, Mom, it feels so good. Just juming in the pool.

When his counts were down this past Friday my very first thought was I was thankful that it wasn't the Friday before because he wouldn't have been able to have his party.

I did see and feel what you and Chris were going through on Sunday questioning whether you should bring CJ out. You had to know we double checked with everyone about their health prior to that. I saw your faces when an extra person came you didn't know and I felt your pain. My heart ached for you but I said nothing as I didn't want to address it.

I know we have to trust in the protocol but now that you mention it I remember the papers they gave us to read before the pill regimen that said there is a good chance of heart damage and organ damage. Can you ask the doctors to do another echogram soon into the pills. Can you find out how long we have to wait to check on his heart. I don't want to be anxious but I confess my mind goes there sometimes.

I love you guys. Please give an update after today's blood test so everyone knows the counts.

Love Mom

Tammi said...

Dear CJ & Dawn,
We have been back from Miami for a week now and I miss you guys all so much. When I was there I asked Mom if I should move back to Miami because Travis and Jerri-lyn had so much fun spending time with their cousins and she said that I was "getting a false sense of reality". She reminded me how this was a special birthday week and that while everything felt and looked great and fun and everyone had so much fun playing backyard baseball and going out to dinner, that wasn't your "new normal". When I wake Jerri up to go to school in the morning this past week she would say, "Are we going to see CJ?" and then I would tell her, "No, honey, we are at home and going to school." and then she would say, "Well, okay, but I want to go the hotel". She's so cute! It has taken her about a week to stop talking about CJ. She really has a special little girl love for him. It's so cute. I am going to keep praying for the new cocktail to bring CJ to a safe and stable level. I love you guys and I miss you all.
Lova Always,
Aunt Tammi

Anonymous said...

Hey Guys,

Dawn, just remember God's timing is perfect. Trust in Him. Do not fear. He has plans to help you and prosper you, not to hurt you (CJ)... He has used this little boy for a very BIG job. I believe that CJ has inspired and helped save many souls! I know he has had to suffer in the process. But, it is not in vain. Dawn, Your focus on Christ is astounding and inspirational! I can not talk about CJ with any one that asks how he is doing without talking about GOD because your family, updates, and discussions are so interwoven with GOD, I can not seem to seperate the two to give updates to anyone who asks with out talking about Our LORD and SAVIOR with them.

Love,

Jacks

Poppa Jerry said...

Dear CJ,
Well I guess it's about time I put in a few words here since I was such a big "hit" at your party. I really "fell" for little Cory in a "big" way....and, as I have been nursing this bruised knee for the past three weeks, I keep remembering how good God can be when you need a little extra "body english"! He kept us both safe from a disaster. (You had to be there to appreciate this comment).
Of course, the members of Olive Tree that attended the party were so pleased to meet you and all remarked what a little gentleman you were as you came over to greet and acknowledge each of them. As you know, not a service or bible study passes that they do not pray for you, CJ.
I really enjoyed playing catch with you and Brett the other day too, and I am looking forward to that bike ride around the lake...perhaps this week if you're up to it? Tell Mom I'm thinking Mr. Matzaball may visit also.
See you soon my grandson. Hugs and kisses to Mom, Dad, Brett, Alibrandi and Cory. I love you
Poppa Jerry

Tammi said...

Hey Guys What's up?

I am waiting with great anticipation for the newest BLOG post! What's happening down there in Hot South Florida? How are ya'll doing? How's my awesome nephew CJ? I miss you guys a lot!

I love you all,
Aunt Tammi

Anonymous said...

Psalms 5:11-12 But all who find safety in you will rejoice; they can always sing for joy. Protect those who love you: because of you they are truly happy.You bless those who obey you LORD; your love protects them like a shield.>>>>>>> You all have not been forgotten, you are still prayed for daily, and lifted up to our loving Father. YOU ARE LOVED!!!!!

CeCe said...

Hey CJ! I had the best time at your party, and I so glad you had a great Spring Break! It sounded like lots of fun! FREEDOM! FINALLY! I am glad God was able to reel you guys back in at the right time. I really think it was the perfect timing. At least you go the weak!

Dear God,
CJ is so special to all of us. Please help him get better so that he can hang out with everyone, and have the freedom he had Spring Break. Thank you that he only has 16-17 months left God. We praise you that you have kept this family safe from any real bad sickness. Please don't let anyone go near them when they are sick. Thank you that you have been so good to this family, and thank you that they are such a blessing to everyone, and thank you that every time I ever read this blog, I always get blessed, and I always get encouraged, and thank you that Mrs. George has been able to shear all this with everyone, thank you that people that don't even know the Georges have been praying, and crying, and loving CJ through this whole time! I thank you so much for Mr. George, and Mrs. George, and Alibrandi, and CJ, and Brett, and Corey. Thank you that they have been a blessing in my life God.
Amen

I think my prayer said it all. I love you guys so much!

CeCe