Monday, February 21, 2011

Critical Time

Another month has come and gone. CJ had another port flush and blood counts this past week. His counts are continually on the rise. Although we are thankful for his continued recovery, it is still a little strange to see his numbers begin to fall in the "normal" ranges for the first time in over two years. So far his side effects of coming off chemo after two years on so many medications have been mild and nothing out of the ordinary. Praise God!

Of the five oncologists that we rotate through, we saw his more 'serious' doctor on this visit. He was examining CJ thoroughly for any late effects as well as for signs of recurrence of cancer. While doing so, he began explaining directly to CJ how important it is and why he must check 'down there' every time CJ comes in. He explained to CJ how the cancer will often try to come back and this is a common relapse place for the cancer. I sat there listening and thought, 'what must it be like for CJ, a young boy, to have to think or worry about that?' But I guess the things CJ thinks and worries about already have no comparison to a typical 11 year old boy.

After examining CJ, he turned and remarked in his serious tone, "The first year is the most critical! Every year after that the relapse rate decreases."

I find it amazing how mere words can create such a strong emotional and physical reaction. It was just words he spoke. But it was the truth in the words that stung. I know there is the chance that CJ can relapse. I know it is most critical in the first year. It was not news to me so I wasn't sure why it affected me.

For the next several days, the words "the first year is the most critical" hung with me. They kept replaying in my head. They seemed to be mocking me and coming to me at strange times. I caught myself calculating the months in my head and wondering would that date magically change things once it had come and gone or would the months and years just tick by with one blending into the other before we knew it.

These were not lies playing in my head so it wasn't like I needed to counter the lies with truth. Still, I knew I had to replace them with a stronger truth. So I chose the verse in Matthew 6:27 that says, "Who of you, by worrying, can add a single hour to his life?" God's words not only counter the lies of this world, but His truths are also greater than any truths the world has to offer as well!

It has been difficult to cling to those truths as we are constantly faced with areas that tempt us to worry or despair.

Our sweet friend Mackenzie Gonzalez is in critical condition in the Pediatric ICU at Miami Childrens Hospital. Many of you know how special this little girl is to our family. She went in 23 days ago for a surgery that was supposed to be a two day turn around. We were all planning to go to cancer camp together that weekend. She never made it to camp. She was having trouble breathing and was intubated. She been in a medically induced paralytic coma ever since. It has greatly effected CJ and our family. We are heartbroken for the entire family.

During this time, I have had the privilege of becoming Mackenzie's Godmother. We had a small ceremony in her hospital room over her bed. She is in a coma but can hear us. It is an honor I do not deserve and yet it a privilege and honor I will cherish for the rest of my life and I am so humbled they would ask me. Alibrandi, my oldest daughter, was there with us but CJ could not bring himself to go. He did not want to see Kenzie like that. He watches every video I post and looks at every picture I take of her and always asks about her but says he cannot see her that way and I respect that.


As I sat with Kenzie in the ICU this past week and I thought about all the critically ill children surrounding her, I could help but think of the doctors words to me at CJ's appointment about this being a 'critical' time. I suddenly realized it is not critical to God. He is not caught off guard by these tragedies. He is not on a timetable to bring healing and He is not hanging in there to see how it all turns out because....

"...all the days ordained for me (CJ) were written in your book
before
one of them came to be."
(Psalm 139:16)




I find it amazing how God will give me the opportunity (or should I say force me) to practice what I preach almost immediately. After typing this CJ called me into his room to tell me he was aching all over. He has a fever, chills, and is lightheaded. He seemed very concerned about the possibility of his port being infected because he was in the lake earlier in the day as he helped his father clean the yard. He has heard enough to know that an infected port is very serious and can even kill you if left untreated. We told him that we really doubted his port could be infected that quickly. He did have a fever and if it got any higher I knew I would have to take him to the emergency room as per his protocol. Thankfully that never happened. he made it through the night although he said he woke up fighting the chills a few times.

We have since spoken to his doctors and considering the fact that his brother Brett and I have both been sick recently we feel confident that this is nothing serious and can be treated accordingly while watching him closely. But isn't it kind of God to allow me to put my words to action and combine them with faith!


________________________________________


Many of you have asked about CJ's poppa Enzo. He is still fighting! It has been gut wrenching and very difficult to watch a man like that suffer like this. It is hard to watch anyone suffer but you cannot possibly understand if you don't know Enzo Alibrandi. There has always been a dignity about him and this disease has a way of stripping you to the core. He is on palliative care at this point. His cancer has spread and is causing extreme pain. and yet I have never seen someone more determined to live no matter what he faces. He gets up every day and fights, determined to keep on living. My mom is his greatest advocate. The both have completely amazed me. I could not be more proud of either one of them and yet my heart is breaking daily for them. Thank you for your thoughts and prayers for CJ's poppa Enzo.

If you have not heard the new song by Rascal Flats, "I won't let go" I would encourage you to try to listen to it. It is a beautiful representation of what my mom has done so faithfully for her husband. She dedicated it to him and played it for him while sitting next to him reading him the words and stressing that she will 'fight his fight' and she 'won't let go' as he cried absorbing what the song said. And it is exactly what Mackenzie's parents have done time and time again as everyone tells them to give up and let go. Yet they fight for her and they won't let go.
When I hear it, I hear God singing over me and pray that you sense it too because He won't let you go.....

"Never will I leave you, never will I forsake you."
(Deut 31:6)


To follow Mackenzie's story visit her caring bridge site at this link and/or follow CBC on facebook at www.facebook.com/childrenbattlingcancer. Please continue to pray for her family, her parents and her siblings. The battle is the Lords and yet we are weary soldiers.

2 comments:

Reta said...

I have reading about CJ for a long time now and I am amazed at his courage but I can see that it comes from his loving family. I pray that he continues to stay cancer free.
When you write, you give courage to other people such as I.
My father, sister and husband all passed away from NHL and my brother has been in remission for 5years.
My sister did a lot of things she shouldn't have done such as refusing treatment and then when she decided to get treatment it was too late plus she had yeast menegitis which caused swelling to her brain. I don't want to cause more worry but it is important for people that have low immune systems to wear shoes outside and gloves if they are working in the dirt as menegitis can come from bird and animal feces so if you have any abrasions at all,you can contact it through them. It is a terrible disease and I don't know why doctors don't warn their patients about this. Also, if you have animals, they need to be kept very clean and free of fleas as a young girl got menegitis from her dog. I don't tell you this to worry you but just to let you know as I would not want to see anything else happen to CJ.
Sincerely,

Reta Krukowski

Anonymous said...

Dawn, your words are beautifully written and you are so eloquent, it seems my words are just garbled and I always seem to be saying I am praying, I am praying, but you can put purpose behind your words and you can lead me to God's words, that is a tremendous gift you have. We are the weary soldiers and we will fight with CJ to remain cancer free forever and as yet we mourn with you over the loss of Mackenzie's life, though she is not lost, she is in Heaven, but she is lost to us and our earthly life and we hurt for her family so much. You are greatly loved and it is your calling to do exactly what you are doing, educating us about our bond to God and our faith in God through "troubles in life" as Jesus said, In this life you will have trouble...

Love you Kim,

http://www.caringbridge.org/visit/trumanhedrick