Wednesday, October 27, 2010

Stand by and Watch

We are heading back to Joe DiMaggio tomorrow (Thursday for CT Scans, which were finally approved by our insurance carrier. We will follow up Friday morning with blood counts and a possible port flush. Shhh.....Don't tell CJ yet!

Please pray for all to go well and once again... for clear scans.!!!CJ will be up bright and early drinking the contrast dye necessary to get the scans and then we will head over to the hospital to get started. I am honestly not completely sure why we are doing this since the PET Scan was clear but I believe t is because the doctor wants a baseline in the event that CJ were to relapse in the future. Which he won't! Amen! But I think it may be because it shows some views that the PET Scan does not. So all in all it is very important.

CJ has been doing really well physically. He is playing baseball again and he loves it. I can see the improvement in him physically as he runs the bases. His strength and endurance are coming back gradually as well.

He is really falling in love with Hockey, and in many ways Hockey has fallen in love with him. CJ had a big impact on the COO of the Fl Panthers, Michael Yormark, when he spoke at an event. As a result, Mr. Yormark invited CJ to speak at the FL Panthers business meeting a couple of times. They also invited him to drop the first puck at the Hockey Fights Cancer game as well as ride the Zamboni on opening night. This was really wonderful for him. He was so excited for all of this and it all fell right when he was ending treatment and getting the scans completed so it has been very celebratory for our family.

We also recently attended the FL Panthers Hockey Foundation Annual Luncheon where they announced their mission to fight pediatric cancer. We are excited to be a part of this, not only as a family but also as a foundation. They have selected our foundation, CBC, among other great pediatric cancer foundations, to support as part of their ongoing mission.

We are grateful that more and more corporations and foundations are getting behind pediatric cancer. We still have a long way to go but they are helping pave the way for the future. We are so grateful for the Florida Panthers as well as the Hyundai Corporation for their Hope on Wheels Program. Some other amazing foundations supporting pediatric cancer are Glad Cookies for Cancer Foundation (these are the Glad products you buy at the store), the Jeff Gordon Foundation and the St. Baldricks Foundation.

Speaking of the Glad corporation, CJ has been paired up with Peter Facinelli of the Twilight Series for the Glad to Give Celebrity Cookie Challenge. I have been told that if Peter wins then CJ wins. You can help Peter win by simply clicking this link GLAD TO GIVE and hitting "Join Team" Under Peter Facinelli. Not completely sure yet what he wins but I know it is that simple. So take a second and do this for CJ! You guys have already voted him to the top of the Most Powerful Kid Contest once before, so I know you can do it again!

As I mentioned, CJ has been speaking at many events for Light the Night to help fund-raise and promote the walk. He has been selected as the Honored Hero for Light the Night's Broward Walk this year which will be held on November 13th at the Wayne Huizenga Plaza in Ft Lauderdale on Las Olas. As the honored hero he will be speaking at the kick off right before the walk so if you plan to come out don't be late! Our tables will be somewhere near the stage this year so you all can see well.

At this event, we will be cutting off our blue Pray for CJ bracelets that we put on over two years ago to show support to CJ and remind us to pray. There are so many of you who have consistently worn them for two years now. Some I know of have never taken them off. Amazing! And it means a lot to CJ and our family. Even if you have not worn yours in a while, put it on and come to the walk and stand with us as we symbolically remove them just as the Lord has removed the cancer from CJ's little body. If you need one or have lost yours let me know and I will send you another one!

We are really hoping for a huge turnout for this END of Chemo Walk for CJ. Come celebrate with us. If you still have not joined his team here is the link Light the Night Team CJ End of Chemo Walk.

I know all of this sounds so wonderful and it is true that some really amazing things have happened to our family as a result of all of this. We had the opportunity to spend some time with some family and friends this weekend at a very special place and it was amazing. It wasn't something Chris and I could do for CJ. It was a gift. I kept thinking, how did we get here?

Sometimes I ask myself......If someone sat me down and told me all that would happen and all the good things that would come to my family but only if my son got cancer and went through 2 years of chemotherapy and fear and anxiety never knowing if he would survive and watching so many other children suffer and die what would I have said; I think I would have probably said, "No thanks! Keep your blessings and I will keep my healthy child."

Of course I did not have that option then and that is a good thing. However, I am so thankful that God allows, even orchestrates, good to come from bad. I am so thankful that some people out there 'get it' and are willing to use their resources, time, energy, blessings to lift the spirits of a child who has been through something like this. (Peter Kahn, there are no words to thank you for the generosity and kindness you have shown our family. God is using you my friend. I pray you will see His hand on your life as we do. We are truly stunned at what you have done for us. Thank you!)

As CJ's parents, it means the world to us to see him sit on a Zamboni and ride it across the ice at a Hockey Game, or drop the first puck, or throw out the first pitch at a baseball game, or in the water riding the back of a dolphin, or enjoying his friends at an event we could never have otherwise provided for him. For any parent these would be great moments right? Sure they would! But you see, we have sat by his bedside in a hospital for two years watching him be poked, prodded, and poisoned and there was nothing we could do by stand by and watch. Those images get burned onto your brain no matter how hard you try to not allow them to. So if we can now stand by and watch him have some joy, you better believe we are grateful and we are burning those images into our brain just as fiercely.

As I stand by and watch, I am always thanking God. Don't get me wrong,...I see the individuals who organize, pay for, and donate these events to CJ and I am thankful for them. But even more so, I see my God's hand behind it all and I just think, Wow Lord, Look what you did! You are so kind!


"Do not be afraid. Stand firm and you will see the deliverance the LORD will bring you today... The LORD will fight for you; you need only to be still."
(Exodus 14: 13-14)

Monday, October 11, 2010

Bitter-Sweet

Update: CJ's scans came back No Evidence of Disease! Praise God!



I have not written in a while. I have sat down to do it many times but have continued to find myself in a battle for a clear mind. I guess I know how transparent I am not only in person but also in my writing, and I know my struggle would show through. Not that I ever struggle to admit that I struggle, as any long time readers of this blog know, but this has been a different kind of struggle. It seems like lately each battle I have faced has been two fold. The best way I can describe it is 'bitter-sweet' although more accurately processed in my heart and mind as just plain confusing.

First, let me update you on CJ which is why we are all here. As you know, CJ is now one month off chemo. This has been one of those bitter-sweet transitions for me. I celebrate and rejoice and fall on my face before the Lord in gratefulness for CJ's healing and continued physical presence with our family, but I also struggle with the transition and the end of something that became very familiar.

Recently, we attended at a luncheon for the Florida Panthers Foundation. They have adopted pediatric cancer as their mission and we are so grateful to be a part of this great cause they are supporting. As the slide show played, images of CJ flashed on the screen and clips of interviews I had given were played. These were followed by images of 12 year old Carina who passed away while her and CJ were both in treatment for Lymphoma. Her mother's video clip played and I was just torn up. Here I was sitting at this beautiful table with my son across from me celebrating his recovery and just extremely thankful to have him there. I had been excited for him all day. Then it hit me so suddenly, at the very next table was my friend Carla, Carina's mom. Her child was not seated across from her. Pictures of Carina continued to flash on the screen and I just sat there wondering if I would have the strength or desire to be here if CJ were not with me. It was bitter-sweet, and I decided right then and there that there is nothing harder than rejoicing while suffering.

Last week we finally met with CJ's primary oncologist. Chris and I felt we needed to sit down and discuss where we were at and what we needed to watch and prepare for as we enter this phase of being off chemotherapy after two years on it. Walking away from treatment with things so unclear was not comfortable for us. Walking away with no scans, as I mentioned in our last post, was a shock to Chris and I and left us feeling extremely vulnerable.

Thankfully, we have a great primary oncologist and he was able to explain some things to us. We felt we needed to hear from him why we were not having scans and where to go from here. We feel very confident with him. He was the first person to tell us CJ would be okay and we would get through this. I am not sure if I ever shared this before, but about a week into CJ's diagnosis we were so scared and confused. We had met with so many doctors and everyone who walked in our room was so serious and sometimes even somber when it came to what was wrong with CJ. No one really knew what CJ had at first and we waited days for an actual diagnosis.

After the diagnosis, while CJ was in a biopsy procedure and we were standing outside the door of the room, we ran into our oncologist and I will never forget Chris asking him directly if we would be taking CJ home on hospice when we were discharged. I was shocked Chris asked this because I had not considered this and it immediately scared me when I heard the word 'hospice'. The Oncologist's eyes got really wide as he responded with a definite, "No!" It was the best 'No' I have ever heard! I never thought I would be so happy to hear the word no before. Needless to say, he has been my favorite doctor ever since.

Well, we sat down with him just last week, two years after that emphatic 'no', and this time we were hoping he would say 'yes' to scans. After some discussion, what it boils down to is that there are different schools of thought with different doctors for different treatments of different cancers. Basically, there was no set course at the end of non-Hodgkins Lymphoma like CJ had that that said we have to scan him at the end of treatment. CJ's cancer is a very aggressive and fast growing cancer so if I understood correctly they are thinking you will most likely catch it before the scans even will if they are spaced out a year apart.

I asked about the blood work catching it since it never did in the first place and he admitted it would most likely not catch it if CJ had a relapse of Lymphoma. He said, CJ would catch it and we would catch it because we 'know' things now and would be more aware of certain changes. No pressure there, right! So I of course asked why all the blood work then and he said that they are watching for Leukemia which is a "late effect risk" for children treated with this. That was news to us. They also use the blood work to monitor for any organ damage or side effects from the long term chemo he has been on.

However, in this discussion we also learned that we did have the option to do scans. Thankfully, our doctor agreed that scans would be the best course for CJ at this time so that we can have a baseline of where he is now and a comparison for the future if there was ever any re-occurrence or even suspicion of relapse.

As we were talking about CJ's treatments and progress, the doctor began to read out loud to us the old scans from when CJ was initially diagnosed. I was surprised at my internal physical reaction to this. Hearing all the technical and medical terms expressing just how vast CJ's cancer was spread throughout his body and how many tumors he had was a shock to my mothers heart all over again. I think we have been so focused on treatment and getting through each phase, that we have not looked back to the beginning and considered where we began all of this. It has just been one foot in front of the other for two years now.

As he reviewed CJ's initial charts, he read words aloud like "multiple masses in kidneys" and "multiple solid renal masses" and "extensive infiltrative soft tissue density in pelvis region" and "soft tissue mass in presacral region" etc. etc. As he read, those words all came flooding back to me and I just sat there listening with a heavy and yet thankful heart. It was a bitter-sweet feeling once again upon hearing where my son was then and knowing where we are now.

It is now two years later and we are prepared to do all these scans all over again. Instead of the above medical terminology and language we are fully expecting to hear, "No Evidence of Disease" NED!!! NED!! NED!!!

So that is what we are asking you to pray for.....NED for CJ!!! He will have a full day of tests and scans this Friday starting bright and early at 6am. He has a PET Scan, Cat Scan, EKG, Echocardiogram and the like. The scans are to check for any signs of remaining disease that the chemo did not kill off. The heart tests are to check for damage to the heart from the chemo. Apparently, one of the common late effects for kids treated for childhood cancer is heart damage. This often does not show up right away so his heart will be monitored for the coming years for this. We are fully expecting and asking God for this to be completely normal as well.

CJ continues to progress physically. His blood counts will steadily rise as he is off chemo for longer and longer periods of time. He has been immune suppressed at one level or another for so long and on so many different medications and steroid regimens that I am not sure he knows what it feels like to feel normal and truly healthy. But he is getting there, praise God! His strength is increasing and mommy is praying for his concentration to increase as well.

Thank you for your continued prayers for CJ. We are so grateful and humbled by your prayers!!!

On another bitter-sweet note....my 4 yr old niece and 7 yr old nephew, who have been living with us since April, went home to Gainesville last weekend. My sister was ready for them to return and we felt this was best for her, the kids, and for our family as well. In all honesty, the last 7 months were extremely difficult. We knew we needed to take these kids in and it was what God wanted us to do but that did not make one bit of it any easier. So as you can imagine, saying goodbye was a bitter-sweet experience for us. We will continue to pray for them and just beg God to use whatever good we imparted in their lives and cover over any areas we failed to fulfill His call on our lives in the lives of those children. I know I failed Him in so many areas when it comes to this issue and this is something I am working through. Thank God, His plan does not rest on whether I succeed or fail.

Many of you have asked about my step father Enzo. Thank you so much. I don't update because I just honestly don't know how to answer that question most of the time. He is with us! He is fighting to live! He just wants to live and is more determined to live than anyone I have ever known. He refuses to give up and does not even read the scan reports that would have much of the above mentioned medical wording only a hundred times worse. He won't let my mom read them to him. He wants to believe it is over and he is fine. The truth is, the doctor pulled him off the chemos because they were killing him too, just not as quickly as the cancer would have. He could not tolerate anymore. He is now on a maintenance chemo called Avistan. It does not have a long promising outcome but don't tell Enzo that. He is cured as far as he is concerned. We as his family are grateful for his attitude but we carry the weight of what we know the scans say and the statistics say. Regardless, we never thought he would be here this long and we are grateful for every single day he has. He fights to live as normal as he possibly can but the truth is he is in more pain than most people can imagine. It is just so hard and so sad to watch. My mom has been amazing. She walked us through my fathers death last year and now walks my step father through the valley of the shadow of death with no clear hill top in sight. She just keeps walking by his side and holding his hand. As depressing as it is, it is also quite beautiful. She is in the trenches with him; fighting. This has brought us closer in deeper and more meaningful ways as a family. I guess that is the sweet side to this bitter pill.

Lastly, tomorrow will be the most bitter-sweet day of all. Tomorrow, October 12th, my son Brett will turn 8. While we celebrate life and thank God for this very active and sweet son he has blessed us with, it will also mark the one year anniversary of the suicide of my father. I will drink that cup and taste that gall beneath every smile and laugh and joy I express tomorrow. I will choose joy and not sorrow tomorrow as I know that they will both be laid before me and I will once again swallow that bitter-sweet pill that has become a friend to me.

In reflection, the cross is the most bitter-sweet thing that has ever happened to me. If I can rejoice in the cross, then I can rejoice in anything.