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!