Sorry we have taken so long to post an update. Thank you to all who have sent emails or called to ask how CJ is doing. CJ had his counts done last Friday and they were back up due to time off chemo and a regimen of steroids. They resumed his chemotherapy and he is slowly getting back up to 100% dosage depending on how his counts respond. So far, other than some nausea that he has been able to control, he is responding well to being back on all the medications. Some days, as I look at all the doses and the amount of empty pill bottles he has consumed, I just imagine what all that is doing to his system and all the effects it can have on him, yet I know we must stay the course and finish walking through this trial and continue to trust God for healing.
Physically, CJ is getting stronger and trying hard to build back up his energy. He still tires easily some days but tries so hard to keep physical even in this heat and build back up his strength. Emotionally, he is dealing with the loss of more cancer kids he has come to care about even if from afar. Many of you who follow this blog have never met us, yet if CJ passed away you would feel the loss as if it were your own family because of how the blog has allowed us to connect and share our deepest struggles, unspoken fears, and humbling victories. CJ has become part of your family too.
We have also experienced that with the kids we get close to through our site and other sites. We get intimately involved in their battle so we feel it deeply when they pass away. With each death of one of these precious kids, we are reminded that CJ is facing the leading disease killer of children and second overall cause of death in children. It is humbling and I would not be the first parent to question why my child is doing well and these other children are dying. There really is no rhyme or reason to this disease from a human perspective.
We have miracles walking around like Bella in Miami who was told she would not only likely die, but definitely never walk again. We have miracles like Mackenzie who was told to go home and enjoy what little time was left and she is still here with the tumors reducing in size. Then we have children that appear to be doing great in their treatments like beautiful Carina, who had the same cancer as CJ, was in maintenance and had a sudden relapse and passed away before doctors could even formulate a plan. No rhyme or reason from our perspective.
This week CJ was really sad when Ellie Potvin passed away. She is a beautiful twin to Grace. Her names means 'light' and she was exactly that while she was here. If I live a hundred years I could only hope to impact as many people for Christ as Ellie did in 8 short years.
Each time I have to face one of these children dying, I learn something new. I discovered recently that I don't like the word "survivor" for cancer patients that are alive. Survivor implies that those who passed away did not 'survive' cancer. But I beg to differ! Sweet Ellie Potvin is a survivor....not here on earth, but permanently in Heaven. She has survived not only cancer but even more importantly, she has survived death because Jesus conquered death on the cross and tasted death for us so that we would not have to. Ellie trusted Jesus for her survival right up until her final breath and He did not let her down. At 8 years old, Ellie lay dying, unable to even speak clearly, yet she motioned for something on the table near her mother. When her mom handed her the anointing oil to see if it was what she wanted, Ellie reached out and anointed her mother's forehead whispering, "Mommy, it is okay. I am okay" How can you not call that a survivor?
Carina is a Survivor! Surviving in victory Heaven with her Savior that she entrusted her life to. Gaitlin is a Survivor! He believed Jesus for his healing and Jesus granted it by taking him home. Remember, Jesus will either save you from the trial or through the trial. One takes place on earth as He delivers you from the trial and one takes place in Heaven as He delivers you through the trial straight into His presence. Either way it still equals survival! I hope you have that kind of survival to look forward to.
Regardless of the method of survival, we know as a family we must continue to fight this disease and do all we can to raise awareness, support, and research for CJ and these families while still trusting God with the results from His perspective.
We did just that at the Childhood Cancer Benefit Concert held last week. It was just beautiful! Our family was so honored to be a part of this event. My friend Kristi Huddleston of Music4Miracles did a great job with everything. CJ was able to be there even though his counts were low at the time.
We want to say a HUGE thank you to Kristi and M4M for all you did for our family and all the families that attended this event. What a blessing. If you did not get to attend the concert we just found out that you will soon be able to purchase the video of the entire concert and all the money raised through the sale of the videos will still benefit childhood cancer. So even if you could not attend the night of the event you can still see the concert and help. That's awesome! I will keep you posted about those details as they come about.
Even better, you can now purchase the single of the childhood cancer song, "Already an Angel" which was debuted at the concert. This song was written by Kristi Huddleston when CJ was first diagnosed and developed into this beautiful concert to raise awareness for all children battling this disease.
You can purchase the single of "Already an Angel" for $10.00 for yourself or to be donated in your family's name to a family with a child battling cancer! We will hand deliver these so families can have this beautiful song. Please help us make it possible to give all these kids a CD! To order CD's for yourself or a CBC child, just send a quick email to firstname.lastname@example.org and let me know how many you want.
On another note, this week we got what we consider some 'good news' in regards to CJ's Poppa Enzo and his cancer battle. ( I gotta tell you that that stuff is hard to come by in my family lately so we will take any good news we can get!) After a hard week with appointments everyday, he had full sets of scans taken. He was trying to prepare himself for the worst possible news by telling everyone all week that he was going to see the doctor to get his "death sentence". It was really hard for my mom to hear him talk like this yet she knew this was his only way to prepare himself for the worst possible outcome of his scans. However, the scan reports came back with "significant improvement overall". It was actually a bit of a shock with all the setbacks he has had. Enzo cried for joy. He is not cured by any means and it doesn't change the fact that he has an incurable cancer, but it means he has more 'time'. He is now re-motivated to fight through this which is a good thing because the chemo will now be extended. He had a full chemo Friday and went home to be sick, weak, and throw up for the remainder of the weekend. But he is happy to be alive and we are happy with that bit of good news.
Okay! Okay! God just corrected me as I was sitting her typing. He does that a lot! You can not imagine the things He makes me delete from here. Instead of hitting the delete button this time, I will just tell you that as I typed the above comment about good news being hard to come by in my family, He lovingly reminded me that I live in the reality of the best "GOOD NEWS" every single day! "We tell you the good news: What God promised our fathers he has fulfilled for us, their children, by raising up Jesus." I am blessed beyond measure that He has allowed be to live in the reality of that good news every day no matter what bad news I have to experience in this life.
Thank you for checking in on us and sticking by us through the good days an the bad. Please continue to pray for CJ and all these kids and their families. Our hearts are heavy for the families that are coping with the loss of their beautiful children. Pray for CJ to continue to heal physically and be strengthened spiritually. We pray that we will learn to trust God's perfect perspective over our own.