Thursday, July 16, 2009

CJ with the DJ's
I know this is extremely short notice...but CJ will be interviewed live on 99.9 KISS FM for their Joe DiMaggio Children's Hospital Radio-athon Fundraiser tomorrow, Thursday, at 11am or shortly thereafter. Tune in anytime all day Thursday or Friday to hear testimonies of other Joe DiMaggio families or to support the fundraiser.

Update: CJ did great. Thank you to all the staff at Joe DiMaggio and Kiss FM for helping it run smoothly for us. I will post a sound bite here as soon as I receive it from the station. I can't believe all the amazing testimonies and stories they are sharing.

Can I Have a Do-Over Please!

CJ finally had the opportunity to spend some time with a special kid this week. His named is Patrick Pedraja and he is also the son of an officer with the Police Dept CJ's dad works for. Pat is just 14 years old and the week we saw him he had just completed his last round of chemotherapy after three and half years of treatment for Leukemia. We had been hoping to get CJ and Pat together ever since CJ's diagnosis back in September but this was the first opportunity. God's timing is perfect!

It was moving to see CJ and Pat together and listen to them converse about things no young boys should be able to chat about so naturally. The discussed the similarities and differences in their treatments. They talked about their ports and their experiences with chemo. They talked about things and used words that would be foreign to most adults. They certainly were to me less than a year ago. As I sat and watched them and I spoke with Pat about his future plans, I realized God was giving me an amazing "do-over". I had prayed for this "do-over" but never expected it to come.

You see, our family met Pat about two years ago while visiting briefly at a friends home. He had come to visit the family while we happened to be there. We were told he had Leukemia. I confess I did not really know anything about Leukemia at the time and I am ashamed to admit, I did not make any effort to try to find out more about it either. I did not even realize it was a type of Cancer. I thought it was a blood disorder of some type. All I understood was that he was sick and was receiving treatment for it. Of course, that should have been all that it took for me to try to understand what he and his family were going through and offer my sincere compassion and heartfelt prayers. I do remember being told he was receiving treatment at the time and I remember him having to go inside and lie down after only a short time of playing. It wasn't ignorance that kept me from understanding what he was experiencing that day. It was selfishness. Unfortunately, I was so consumed with my own struggles and feelings that day (which now seem so insignificant) that I did not take the proper time to "....not only look to my own interests, but also tot he interests of others." Phil 2:4

Within a year of meeting him, CJ was unexpectedly diagnosed with Lymphoma, another word I knew nothing about. As we entered the world of cancer and chemotherapy, I learned rather quickly what Pat's world was like and what he and his family were going through. It is unfortunate that it took that turn of events in my life for my eyes to be opened. Needles to say, I have deeply regretted that day of first meeting Pat ever since, and on more than one occasion have wished I could do it all over.

I wish I could say that since then I have not struggled with this. On the contrary, now that my eyes are opened to it, I only see it all the more clearly. I have been continually shocked at the level of selfishness I am able to demonstrate again and again. I truly believe selfishness runs deeper than many of us realize. The root of all sin is pride. And selfishness is pride on full display. I am convinced that it is this very thing that keeps us from truly serving others as God intended and from demonstrating Christ's character in this world. Selfishness, after all, is the antithesis of Christ. He laid down His own life for us. There is no more selfless act than that.

In and odd twist of fate (or more likely, God's desire to make sure this hardhead truly learned the lesson) the majority of CJ's treatments are in a bed at Joe DiMaggio Children's Hospital lying under a roof tile with Pat Pedraja's name on it in big, bright, blue letters. I am not kidding! You do realize by now that this his how God deals with me again and again! To enlighten you as to just how unlikely this is please consider the following: Pat only had about a month of treatment at Joe DiMaggio before being transferred to St. Joseph's in Tampa for the remainder of his care. The majority of kids treated at JoeD in this unit do not even paint a roof tile. There are 100's of roof tiles placed all over the unit, many of which I will never see unless I am placed in those particular beds. There are over 24 beds in the unit and CJ just happens to spend the majority of his time lying under Pat's tile. You already know I do not believe in coincidence so I suppose that is enough said about that.

I remember staring up at it one day as I sat by CJ's bed while he received chemo. I was praying and confessing that I had been selfish the day I met Pat and wishing I could have that day to "do-over" so I could be more compassionate towards him and his family. So I could at least make an attempt to understand and leave that day committed to praying faithfully for him as so many have for CJ.

Although He forgave me, God did not give me that day to go back and "do over". However, He did graciously give me a different day! Seeing Pat the other day, in the same home I first met him, and knowing his treatment was complete was such a blessing. I was truly able to understand. I was able to talk to him and care about him and attempt to understand what he was experiencing.

It brought me a lot of joy to see him and CJ playing together in the yard. It was the first time CJ seemed completely at ease in a group of kids at physical play. He knew Pat had a port in his chest just like him. He knew Pat knew exactly what he felt and understood his private thoughts and fears. Pat was able to understand the frustration CJ feels when his lower body does not cooperate with his upper body. The limp was not awkward or unfamiliar to Pat. He understood the tightness in his joints that CJ struggles with because he deals with it himself. Most importantly, CJ was able to look at Pat, now at the end of his treatment, and see the end of his own treatment maybe just a bit more clearly.

Permit me to share something with you. After our visit with Pat and watching him and CJ interact together, I had a picture of a race. There were lots of runners. The race was long and hard. None of the runners had ever run this kind of race before and were many were not even sure how they got in the race in the first place. The runners were exhausted and could not see the goal line in sight. But they had to keep running no matter what. Quitting was not an option. The runners were always aware that some would not finish the race and that was unthinkable.
Some of the runners finished the race ahead of others. They walked off to meet up with friends and onlookers who had been cheering them on. They celebrated their victory and left the race. Some runners finished the race and went off for water and were just grateful for the race to be over, the pain behind them. But some runners finished the race and instead of walking away they seemed to stay and linger at the goal line unable to turn away from the other runners still in the thick of the race. Instead, they turned back, faced the runners still running and cheered them on, encouraging them to press forward and finish the race.

Pat is that type of runner. He is lingering at the goal line, encouraging others, and refusing to leave anybody behind. How do I know? Because he did it for CJ the other day. And because he did it for 20,000 other kids. Due to his experience with Cancer, Pat started a non-profit organization called Driving for Donors, Bone Marrow Donors that is! And since its inception in 2007, he had added over 20,000 additional Bone Marrow Donors to the National registry. Check our his website at and register to become a bone marrow donor if you are not already one. If you are a minority, please especially check this out and consider becoming a donor. Children (and adults) of Latin and Asian descent have an extremely difficult time finding matches and often die before one can be located because minorities are under-represented on the NationalRegistry. It is as simple as a cheek swab to get started.

It is my sincere hope that CJ, like Pat, will also be a runner that lingers at the goal line, turns back and encourages others that are still in the race. And I pray that God will somehow lead me to be a better example to him, and to all my children, of what that looks like.

"I consider my life worth nothing to me, if only I may finish the race and complete the task the Lord has given me-the task of testifying to the gospel of God's grace." (Acts 20:24)

Prayers: CJ has chemo and a spinal tap this Friday. Please pray for him to have a steadfast spirit and full health. He has been given the go ahead from his doctors to play baseball in the fall. However, he will need to try out this Saturday to be placed on a team. Please pray for God to provide him with the perfect coach and team for his situation. I believe he is a little worried about his ability due to the difficulty he is having with his ankles and full lack of mobility. He came to me the other day and said, "Mommy, I was the the bath tub and I was thinking and praying about what to do about baseball because I am not sure how my ankles will do." His daddy told him that baseball was still almost two months away and that is a lot of time for them to loosen up and feel better. So we signed him up and are hoping for improvement by then. Please pray for his continued healing in this area. We believe it is a joint stiffness due to the medications he is receiving and very common with chemotherapy.

Pats Roof Tile:

If you have not read the post about the roof tiles in Pediatric Ambulatory click here: CJ's Star

Wednesday, July 1, 2009

Especially in an MRI Machine!

CJ had the MRI on Saturday to try to determine why he has been limping. This was difficult for him because it was an MRI, on September 12, 2008, that lead to his diagnosis and changed the course of his life forever. On that day, what should have been 45 minutes became four hours, two MRI machines, and dye injections before being transported to Joe DiMaggio for an unexpected 17 day stay. I think that day was fresh in CJ's mind as we made our way to the hospital Saturday morning.

CJ's greatest fear however, was the injection of the contrast they use in order to obtain clear pictures. He remembered that the last time he had it, he immediately got physically ill and began to throw up. He anticipated this happening again and was highly anxious about it.

For Chris and I, the fear was more related to what they would find. Although it was not what they were looking for, we knew that if there was any sign of new disease in the area of the pictures being taken, they would see it. We knew there was a possibility we could soon be hearing that dreaded 'R' word all parents who have children with cancer fear.......Relapse.

Unlike the original MRI where Chris and I were able to go in together and be there for CJ and each other, this time, God ordained it that only one of us could go in. I assumed He was not only teaching us individual lessons but protecting us as well. I made that assumption when I was in the room with CJ during the MRI and I saw how eerily similar, or 'exact' to be more precise, the room that I was in was to the one on that unforgettable September day. I knew being in there would have been extremely difficult for Chris. Every detail was the same. Every sound was the same. The smell was the same. The instructions were the same. I could only trust and hope that the outcome would not be the same.

Seeing CJ lying in that machine was more overwhelming than I expected. I knew I had to pass the time in a positive way so I began to pray and recite scripture. I did not have a Bible with me so I was going over the verses in my head. Since I was also distracted thinking about CJ, I would repeatedly get lost and have to start all over. I came up with a really interesting version of the book of James in that first hour. Let me just pause here and say, there is no better way to pass time than reciting scripture. It is just like reading in that time flies by when you are doing it. If you have something that is difficult to get through, whether it be doctors appointments, dental appointments, exercising, walking on your treadmill, or getting through a Sunday Sermon (just kidding on that last one) try reciting memory verses! It will be over before you know it and you will have a renewed mind and spirit to boot!

Even though I knew that CJ could not hear me over the overpowering sounds of the MRI machine and I could barely hear myself, I knew the power of God's word was there regardless. I did start to wonder at one point how I must look to the technicians on the other side of the one way glass. For those of you who don't know me personally, I am quite expressive and every now and then I realized I was adding facial expression to my verses. Once I got that under control, by turning my back to the window, time began to pass more quickly. At least for me! CJ, on the other hand, fell asleep. He woke up at one point very confused as to where he was. He began shaking. I stood up to grab his hand to calm him and thankfully he did not try to sit up while still in the machine.

Reaching the end of the first hour, he was pulled out to inject the contrast into his vein. He immediately became upset. He was hot and sweating by now from being in one position for so long. He was afraid it would make him sick. He began to cry. I tried to talk to him and calm him but he was scared. I reminded him of the verse he recently memorized for the National Bible Bee, "Have I not commanded you? Be strong and courageous. Do not be terrified; do not be discouraged, for the Lord your God will be with you wherever you go." Awesome and timely verse in Joshua 1:9.

I said, "CJ, that is a promise from God that He will be with you even in an MRI machine."
And to our surprise, the nurse who was preparing him for the injection suddenly said, "Especially in an MRI machine!"

After this, CJ was calm and able to receive the injection, control his nausea, and complete the remainder of the MRI. Forty five minutes later, we were done and found Chris pacing the hallways and happy to see us. I know he had his own lessons and conversations with the Lord to pass the time during his wait.

To our great joy and relief, we walked out of the hospital that day of our own accord. No sudden surprises or emergency hospital admissions. Since then, we have learned that the MRI was negative for necrosis, fractures, or any sign of new disease! Praise God from whom all blessings flow! This is wonderful news and we are very grateful.

However, although we rejoice in the results, we are still at a loss as to why CJ is limping. To be perfectly honest, this leaves me a little frustrated and reminiscent of those early days when I would take CJ to the ER to be told nothing is wrong and would then go home happy that nothing was wrong, yet still confused.

The MRI results will be looked over by some of CJ's other doctors but at this point we don't expect it to show anything that indicates why he limps. The next possibility is that it is a result of muscle memory from the times he was in pain. This is not unlike a person who has a severe fracture in one leg, is casted for a long period of time, and after complete healing, still walks with a limp or favors one leg out of habit. That assumed, I would believe and hope that physical therapy would be available to him so that it can be corrected.

CJ is also recovering from this whopper of a cold that went through our family. Thankfully, we were able to monitor him at home, control his temperature, keep him hydrated, and avoid a another hospital visit. Thank you for your prayers.

CJ and I will go in tomorrow morning (Thursday) to get his blood counts done and review the MRI results in detail with the doctors. He has a list of questions he plans to ask the doctors. I believe they all consist of when can he do this or that. Please pray he gets some of the answers he is hoping for.

Thank you again for your prayers covering CJ and our family. As we stay the course, we are grateful for all who have stayed the course with us. We have learned huge lessons these past few months and pray that the lessons will stay with us and bring lasting and effective change.

"May the Lord direct your hearts into God's love and Christ's perseverance. "
(2 Thessalonians 3:5)

I must close this post with the confession that it is extremely difficult to post this positive news for our family when we know that so many other families are not receiving the news they hoped and prayed for. I have learned that many families who write about their journey through cancer, struggle with sharing their good news as they watch other families face heartbreaking test results, relapses, and completion of treatment with the disease still present. Instead, they secretly rejoice while those around them suffer. We understand the hesitation as right now our hearts and aching for the Villalona family who took their little princess Amanda home on hospice. Amanda, as you may remember, is the little angel we met at the hospital that I shared with you about it an older post titled Brave Love Little Amanda is, like CJ, the child of a police officer.

We are grieving with them as we balance Romans 12:15 to "Rejoice with those who rejoice; mourn with those who mourn." We take comfort in the fact that they are secure in the Lord Jesus Christ and although they are grieving, they will not grieve like those with no hope, but rather like those who rest assuredly in the hope of Jesus Christ who will gather all those that belong to Him to Himself. Regardless of the outcome, Princess Amanda will be cancer free! Our prayers are with you Princess Amanda

"Then little children were brought to Jesus for him to place his hands on them and pray for them......Jesus said, "Let the little children come to me, and do not hinder them, for the kingdom of heaven belongs to such as these."
(Matthew 19:13-14)

URGENT UPDATE: We were just notified and are sad to announce that Amanda has passed away. We were checking her site daily and yet it always opened to the older post so we had not realized she has already gone to be with the Lord. We were told today that she passed away the same day I posted the above post. This is from the families website: "I wish to inform you that our Princess Amanda earned her angel wings early this morning, 6/30 at 1:47a.m."

We are saddened by the news. I am personally fighting my flesh and forcing it to keep in step with what my spirit knows to be true. My heart is aching for this family. I did not expect this news to be so difficult but Amanda is the first child we have had to say goodbye to since we began this journey. May the God of all comfort draw near to this family and fulfill His promise that "The Lord is close to the brokenhearted." (Psalm 34:18)

We also miss and constantly remember CJ's friend Jia who left for North Caroliona back in January for a bone marrow transplant. He still has not returned due to endless complications. We love you little man and we can't wait to see you again. Keep fighting and take good care of your mom!