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.



16 comments:

Anonymous said...

Hi Dawn,

Yet another post that has left me with goosebumps. I have to admit I was a little nervous since it has been a while since your last post. We will think of you and pray on Friday for NED...NED! So glad to hear that CJ is slowly getting stronger.

Lots of love always
Nicole Alberto Ana

Anonymous said...

We are praying for you all. We love you and miss you so much.

SG

Ily said...

WOW once again I am speechless....Dawn thank you for sharing your story.....It helps in more ways than you can imagine...... I love you guys and will continue to pray for Cj and your family.......see you all soon.
ILY
PS
Tell Cj I love him!!!!!!!

Anonymous said...

His mercies are new every morning, and boy do we ever need them every morning. I will be praying for you and thinking of you tomorrow. You are in our hearts, thoughts and prayers! We love you and are sooo proud of you, Dawn! You ARE doing a good work! Love, aunt Karen

faith2pray said...

WOW!!! Thanks for the update! We love you & continue to pray for each of you!

Anonymous said...

I just read the blog and thought about all the blogs along the way. Your cries, your rejoices, begging for prayers, your gratitude to all who lifted you up, your victories, your struggles, your entire families journey. It is hard to believe that we may be at the end. I still so clearly remember those first days almost moment to moment in the hospital with CJ, you and Chris. It is amazing how all of our lives have changed and that God in His mercy has let CJ be one of the lucky ones to beat those multitude of tumors that filled CJ's little body. I remember the first day someone said it would be a long journey at best and they were correct in both assessments. It has been a long journey and it has had the best outcome. I am confident that all the scans and x-rays will back this up on Friday. I know though it will probably take years before you ever let your guard down.



I also thought about all the wonderful families you have met navigating this same trail. Some ahead of you. Some behind. Some lost along the way. I don't know how you find the strength but it is the little victories that make it worth it. Since you have started CBC you will continue to be involved with these families and helping these children. CJ's ministry and speeches all over the places in front of doctors, lawyers, Indian Chiefs and school kids has picked up and he is touching so many lives and getting people involved in the fight against childhood cancer. For every hand someone gave you - you have responded with 2 hands to help others. You and CJ and the entire family.



Many things are bitter sweet in life. You think you have failed in some areas but failure is a judgment imposed by others and ourselves. We have to take risks and try things that seem impossible or we're not trying. Like you said if you do the job God put on your heart (even if you didn't do it the way you thought you could have) you followed what was put on your heart.



I know yesterday, the day of your Dad's death, was heavy on your heart, and I was glad that you had Brett's birthday to distract you, but I know it has been on your heart every day for the past year. How sad still when you think about it. How Dad would have loved to be at these parties and would have rejoiced at CJ ending his cancer battle. He cheated himself out of all of these wonderful things as well as you girls and grandchildren. Sometimes I get mad at Dad for throwing his life away when I look at Enzo who wants to live so badly and won't let anything stop him. He amazes me more and more each day. If sure determination and will power could cure stage iv cancer Enzo will be cured. Everything hurts him but he just goes and goes. Next Thursday he was scheduled for his monthly Avastin maintenance and doctor's visit but I had to call and postpone because Enzo got a call they had the track for the shifter karts that day and he hasn't ridden his kart in a year so the treatment will have to wait. This medicine for his soul is more important. If Dad was still here he would be praying for Enzo also.



Love Mom

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Anonymous said...

YOOOOOOOHOOOOOOOOOO!!!!!!!!! This is the best news ever!! We are so very happy! Got goosebumps and tears. Congratulations

Lots of love from all of us
Nicole, Alberto Ana

Anonymous said...

PRAISE GOD!! He's so merciful!

We rejoice in this wonderful anwered prayer with you!

No evidence of disease just in time for Thanksgiving!! We have so much to be thankful to God for.

We're so thankful for you and your family and your transparency through this difficult trial. May God continue to bless all of you!

Viguie Family

Anonymous said...

Dawn, You know I think you are amazing and I am so happy to hear that CJ is finished with treatment! Way to go CJ and for you and Chris as well. The fear, the devastation, the heartache, all of it horrible and completely unimagineable by most people, we know we understand and we stand in awe at your strength Dawn and for CJ and Chris and Brett, Korey and Ali, each of you magnificent and love by so many. We absolutely cannot wait to see you all again, to hug and cry and laugh and play together, to see the kids be kids. NED the very best letters in the english language, may they forever be applied to your dear son CJ and our beloved friend. Dawn, for you, for your hurting mother's heart, you have endured so much, the hurt is so deep, noone can reach it to remove it, only God can show you the way and of course I know you know this. Please know that we love you and feel very, very close to your family as if we have known you forever. I am so very glad you are going to do the scans every few months, we need to know that they are cancer free, we must know this to function each day, we cannot live with uncertainty it is too painful for us all. Love, love, love to you all! Hugs and can't wait to hug and laugh with you soon!!!!

Love, Kim, Wade, Truman and Grey

martha said...

Hi Dawn,

I am so happy with this last update which says that CJ scans are No evidence of disease.....Waooooo I am so happy for CJ and the family!!!! May all the glory be to God, He is Good and sooo Faithful!!!!!

With Love,

Martha

Anonymous said...

We are thrilled by the NED results! Your fans, The Gavilans

Billy Long said...

Dawn, A great post. Thanks for sharing. Please give my love and greeting to CJ, and to Chris and the other kids. I keep CJ and your family on my morning prayer list.
Hello to John and Colleen, too.
Bless you,
Billy Long

Amy Derrickson said...

Yahooooo! We are so happy to see that you are healed, CJ!
"Oh, give thanks to the Lord, for He is good,
for His steadfast love endures forever!"
Love,
the Derricksons