Wednesday, May 11, 2011

Results!

We finally got the results of the PET Scan. After a little confusion, a brief scare, and some clarification, we are confident at this point that CJ has NO NEW EVIDENCE OF DISEASE!!!!
Exhale! Thank you Lord!

However, we did have a little hesitation in sharing this before we understood exactly what the report said.

Here's why.....
I left a message for the nurse to call with the results as soon as they were available. When I got the call this afternoon, she said that the results were in and it looked "fine".
I thought that was an interesting choice of wording considering the gravity of the situation so I clarified by asking, "The scans were clear?"
She responded that the doctor said the results "were fine".

You know how sometimes you ask someone how they are and they say they are "fine" and based on the way it is said you are left trying to interpret what kind of "fine" they are. Well, that is how I felt. Fine just did not seem........ fine. I hesitated to celebrate.

I repeated this conversation to Chris and he felt uneasy with the wording as well. We wanted to see the report or talk to the doctor but we would have to wait a few days for the results to be mailed to us. So Chris did what any anxious parent would do.....he drove to the office for the results.

Once he had the scan report in hand he was even more confused and worried so he asked to speak with the doctor.

Read it for yourself and you can see the dilemma....


"Findings: There is no new focal dominant area of intense increased uptake to suggest recurrent or residual hypermetabolic tumor at this time." if it ended here it would be great...but it went on to say... "There is new triangular elevated activity in the anterior mediastinum in a pattern suggestive of thymic rebound hyperlasia." this was the line that confused us a bit
Basically, the words "new elevated activity" were a little worrisome at first. Those are not the kind of words you ever want to see on scan reports. When Chris spoke with CJ's doctor, he clarified for us that this is common after CJ's type of cancer and chemotherapy treatments. The Thymis, an organ of the Lymphastic system, becomes enlarged as it rebounds from chemotherapy. The good news is that it is highly common post treatment and very unlikely to be cancer.

I found this on a website today...

Thymic Hyperplasia

The term hyperplasia means an increase in the number of cells within an organ, which results in a larger organ. In thymic hyperplasia, the thymus gland is larger than normal. Sometimes, physicians use the term "rebound thymic hyperplasia." This describes the thymus gland of patients who have had chemotherapy for lymphoma, or a tumor of the lymphoid tissue. After chemotherapy, the thymus gland is small, because the medication makes the gland shrink in size. After a period of time, however, the gland grows. Dr. Nason writes that it usually becomes large approximately nine months after people have stopped taking chemotherapy, but the gland can grow large in just two weeks or any time from two weeks up to a year. www.livestrong.com




After talking with CJ's doctor, we felt reassured and celebrated the fact that the most important line of the clinical report stated:

"Final Impression: There is no definite scintigraphic evidence if recurrent or residual hypermatobolic tumor at this time."

In English that means.....NO EVIDENCE OF DISEASE! NED!!! NED!!! NED!!!

Praise God! We are celebrating CJ's continued recovery and remission from cancer. We are moving forward with Port Removal and will let everyone know when we have a date.

There are no words to thank you all for your prayers and support these past couple days. Your messages were very encouraging and provided a much needed boost in our spirits. We are so grateful!

I want to share with you that while we were at the hospital for the PET Scan on Tuesday we went to visit a cancer child that was in the hospital for chemo. On the way over, we ran into one of CJ's doctors. She was on her way to meet with the "several new diagnosis" that had come in over the weekend. She remarked about the ones that were diagnosed on Sunday, "Can you imagine? Happy Mother's Day...your kid has cancer."

It really hit me again that even as we get further away from this walk through the valley of the shadow of death, we cannot forget those we leave behind or those just entering it. We have to turn around, look back and shine the light of Christ back in at them so they know which direction to head.

"For God, who said, “Let light shine out of darkness,” made his light shine in our hearts to give us the light of the knowledge of God’s glory displayed in the face of Christ." (2 Corinthians 4:6)

Tuesday, May 10, 2011

unFamiliar Routines

Today was the long anticipated off treatment PET Scan. By tomorrow we should have the results that will lead us in one direction or an extreme other one. One set of results will head us back to chemotherapy to attack the cancer again and another will lead us to port removal and one step further away from cancer treatments. As I have said before, not my will but His be done.

The PET SCAN went well overall. This is CJ's third, or maybe fourth, Pet Scan. But who's counting, right? I guess I should be, but I could not remember. Let's just say we are familiar with the routine....or at least we thought we were until today.

Typically, we arrive and are taken back to a cozy little room where they inject him with the radioactive chemicals that cause the PET images to "light up" in your body on the scans. It is a huge metal encased vile that looks somewhat ominous compared to other plastic injection tubes.
After the injection, CJ has to sit for 45 minutes to allow the chemicals to spread throughout his system. Then he is taken into a large room with the PET scan machine in it. It looks similar to an MRI machine only way bigger and more impressive looking.

He was in the bathroom (nerves) right before the injection, and the technician, whom we had never had before, was going over everything with us as she set up her medical supplies and waited on CJ. I was half listening because I already knew exactly what was going to happen and still keeping one ear out for CJ to come out of the bathroom. She went on, "After I inject him you will wait in the waiting room while he sits and allows the chemicals to take effect." At that, my ears perked up. I assumed I must have heard her wrong considering I was only half listening.

She walked out of the room and immediately my husband looked at me strangely and asked, "What did she just say?" That's when I knew I did not hear her wrong. I told him that it sounded like she said we have to leave the room and wait out in the waiting room, but she is mistaken. I have never waited in the waiting room. I always stay with CJ! I even stay with him during the actual PET Scan while he is in the machine.

I could feel the heat rising in my chest but decided to allow this to play out. CJ came out of the bathroom and I assumed my position in the chair across from him and waited. She returned and injected him with the radioactive chemical. She finished up and informed us that we could leave now and go to the waiting room. I told her nicely that we have done this a few times before and we never leave him. We always sit quietly with him. She went on to tell me how he has to be perfectly relaxed while he waits and be very still. No games. No reading. Just relaxed. All I could think of was, "Well lady, you are doing a good job at accomplishing the exact opposite," because I could tell CJ was getting nervous just at the discussion and change in familiarity.

Instead of saying that, I patiently protested that I was going to sit with him as I always have. when we get PET Scans. She went on to tell me how I cannot because it protects me being of child bearing age and I cannot be in the room with the radioactive materials. The only child I was interested in protecting was the one sitting in that chair right behind her looking at me with those huge brown eyes.

This is when as a mother you want to ask, "Do you have children, mam?" But instead what came out was, "Mam, I sit on the Family Centered Care Advisory Board and I know this hospital is committed to Family Centered Care." She stared at me silently for a moment and then said flatly, "You can sit in the hallway."

So I perched my chair right outside his door within eye and ear shot and sat for 45 minutes in the hallway. Dad went to the waiting room to pray and encourage me through texting!

CJ was a little nervous because of all of this. He said that his stomach and head hurt and I just told him to rest and he eventually just settled into the big over sized chair and closed his eyes for a while.

Eventually, she came to get him and he was taken to the PET Scan machine for scans which lasted for about 20 or 30 minutes. Once again, I perched myself right outside his door and waited. He did well.

We now enter the phase of waiting on results! Thank you again for all your prayers. We will updates as soon as we hear!






Monday, May 9, 2011

PET SCAN!!! PRAYERS NEEDED!

QUICK PRAYER REQUEST

We finally got approved for the final PET Scan. CJ will have it at 7am tomorrow! (May 10th) For anyone up doing your devotions at that time PLEASE add CJ to your prayer list that morning. I know you expect me to say pray for clear scans but I am asking everyone to pray for Gods will to be done. Nothing more...nothing less! His good and perfect will! That is all we want.

CJ is not really nervous this time. At least not yet. Tomorrow morning may be a little different. He is more nostalgic this time. More like, "Wow, this could be the last one."

Last week, we were at the hospital and ran into a close family friend that CJ has known all his young life laying in this very machine. She prayed and supported him through his battle and now she was just entering her own. She was immediately followed by his poppa Enzo. He told me he could not believe they were laying in the same machine he has been in so many times and was about to be in again.

After this PET scan, provided the results are all clear with no new evidence of disease, he will have the port removed. As much as he looked forward to this, he is realizing it will be another milestone in this journey. He told me the port has become a part of him and a part of the whole journey. It will be "good but weird"to part with it. That is a child's version of "bitter sweet" Imagine that!

It started as a race to the finish and somewhere along the way turned into him opening his eyes to what God had placed all around him, even through cancer. His advice to people just getting diagnosed used to be to hold on, trust God, you will get there! Now it seems to be, don't only focus on the finish line or you may miss some amazing people in the race with you and unexpected blessings along the route. Imagine that!

Thank you to everyone who has prayed us through. Those who have been with us from the first PET Scan until now, those that have joined us somewhere along the way, and those that have stuck with us till the end. We appreciate every prayer. Every thought.

We will meet you at the throne of Grace to pray once again for CJ!





Sunday, May 1, 2011

It has been a while. It has not been for a lack of want to but a lack of when to!

Some people say that 'no news is good news' but that is never true with me. I love to write. I hate not being able to come sit and process my thoughts and just write and share this amazing journey with all of you. I have robbed you of such wonderful experiences by not having the time to articulate them here. If I can't do that, it is because I am barely keeping my head above water not because I have become lulled by ease. I almost miss the days that we were trapped inside by low counts and chemo sickness. Yet I know I must even surrender this busy season in our lives to the Lord and trust him to show me the when to.

Regardless, I keep asking myself, how did we get so busy? And then a good friend will remind me, "You have five kids in the home, you home-school, you are finishing cancer treatments with your son, and you run a foundation." And then I always respond with, "How did all that happen?"

So tonight is my when to! I better use the time wisely!

CJ is doing really well. He had another port flush last week. He protested the morning of the appointment as usual. He does this funny laugh cry I have told you all about before. He wants to cry but can't and starts to laugh but it is a frustrated sort of laugh. I filmed him this time because I really want to show him the crazy routine we go through to get him there. The whole family was in the room as he did his little routine. Brett, his 8 year old brother, walked up and slapped him in the face and said something to the effect of "snap out of it and get ready". CJ did his wacky laugh-cry all the more. It was quite comical to be honest...the whole display of emotions and Brett coming in to put a stern end on the whole matter the way brothers do to each other. But I am not posting the video lest you think we are absolutely crazy. I certainly think we are.

CJ did well with his port flush once we were there. His blood counts looked good. He has had some fleeting back pain on and off. We shared this with the doctor but he expressed that CJ's type of cancer would not be likely to relapse in the same area as the initial diagnosis. It will be caught in the blood, lymph nodes or central nervous system, but typically not the initial tumor sight. I have come to accept that anytime that child says "my back hurts" our minds are gonna run wild and our hearts are going to skip a few beats. And then we will take a deep breath and come back to reality and think logically.

We are still waiting for the final scans to be set up. That is my goal this week. Once we have the final PET Scan and CT Scan and we receive the all clear, better known in pediatric cancer circles as "NED" or No Evidence of Disease. Then we can schedule to get his port out. We are all looking forward to that but also know it will be another huge milestone and step of faith in our lives. We are ready though. God willing, CJ will be cancer free and we will be removing his port within a month or two. Yet, not my will but thine be done Lord!

As we prepare to take another step away from this cancer journey we are watching loved ones who will never leave it process the news that no one wants to hear, and we are watching dear friends just entering this journey take those first few scary steps. Our hearts are knit to them in a unique way. And we will strive to fulfill 2Cor 1:3 "...comfort those in any trouble with the comfort we ourselves received from God."

Many of you have seen CJ on the new Joe DiMaggio commercial that airs daily. If you haven't seen it I have it on our Children Battling Cancer facebook page and it is on the Joe DiMaggio Facebook Page. He has been on several different news casts for different events and he has been doing a lot of public speaking for the Leukemia and Lymphoma Society and Joe DiMaggio Childrens Hospital. Each time he truly amazes me and the feedback he receives in incredible and often times overwhelming.

In the past couple months he spoke at the Hyatt Pier 66 for a Corporate Recruitment Breakfast, the Bankers Club in Miami for a Corporate Breakfast, the Black Velvet Lounge at the Bank Atlantic Center for a Corporate Gathering and at the Diplomat Westin Resort for a Donors Breakfast to a crowd of a few hundred community leaders, executives and Doctors.

He has no clue the significance of these places or events at his age but I stand amazed. I just can't believe that the child who used to have panic attacks on the way to PE is speaking to crowds of hundreds and sharing his story in landmark locations. I am extremely proud of him. You know why? Because he still experiences anxiety over each one. He struggles through it , surrenders it and God uses him. What is that about God uses the weak things of the world? It is amazing to watch and I get the unique privilege of watching it full circle. The people who hear him speak and give the amazing feedback would be all the more amazed if they were with us in the car ride on the way there where his stomach is rumbling, his heart is racing, we are praying and wondering why we are doing this......

....For the Glory of God. That's why!


"....Use whatever gift you have received to serve others, as faithful stewards of God’s grace in its various forms. If anyone speaks, they should do so as one who speaks the very words of God. If anyone serves, they should do so with the strength God provides, so that in all things God may be praised through Jesus Christ. To him be the glory and the power for ever and ever. Amen." (1Peter4:10-12)