Friday, August 14, 2009

Two Worlds, One Heart


CJ had chemotherapy today. He did really well considering he had not been to the office in almost a month and his usual nurse was on vacation when we got there. This is always so awkward and an immediate point of tension for us. We get comfortable with the nurses we see regularly who have grown to love him and we have grown to love. They know his personality and his preferences. They know what works for him and what doesn't. And then suddenly, someone new is there and we have to adjust all over again. I was so nervous for him and I really thought this was going to be a huge cause of anxiety when it came time to access his port. Thankfully, I think God had mercy on our apprehension because instead of the new nurse being the one to access him, one of his other, more regular nurses came in and did it. And she was awesome with him! What a blessing!

I think he also did well today because his Uncle Shawn (daddy's brother) was with us. CJ is very close to his Uncle Shawn and admires him immensely. We could not be more pleased with his choice in a role model. We are so blessed to have him in our family. There is nothing like having a walking, talking, breathing, redeemed miracle around to increase your faith. Thank you, Uncle Shawn, for your love for the Lord and for sharing that with CJ today. You were so encouraging to him and it meant a lot to both of us to have you there. Thank you for spending part of your vacation at a Children's Oncology unit.

Although I knew it would be a blessing for CJ to have his Uncle Shawn with him while he was having chemo, I did not realize it would be such a huge blessing to me as well. Having him there increased CJ's strength in that he did not break down or panic before having the port accessed. This usually wears on me and drains me emotionally. With Shawn there he wanted to be brave. CJ does not like others to suffer by watching him cry so he tries to be strong for them. But we all break for our mothers, don't we!

I think it also helped that all he had to have was a push of the chemo med Vincristine and then they could de-access him. In this way, he did not have to have the port taped down and left on for a long period of time which is what he hates the most. It may also have helped that the nurse worked as fast as lightening. There was literally no time for him to get upset. Even I lost track of her and the needle was out of the port before we knew it. CJ told her she was "sneaky" when he realized how fast she took it out. That was cute.

It was also a blessing for me to have my brother-in-law there because this has become such a huge part of my life and sometimes it feels so separate from the rest of my life and those that are close to me. At times, it feels as if I have two lives. I feel like there is this 'other world' I go to that no one really understands. It is a world where kids have life threatening diseases, infants are already on their 4th and 5th surgeries, children are going to die without bone marrow donor matches being found so they can have a transplant, orphans have cancer, kids who were doing well and excited about the future suddenly relapse and start chemo all over again with less chance of survival the second time around. A world where hearts and breaking and people are suffering.....and my kid walks among them. Then I come home and live in a world where neighborhood kids ride their bikes, boys play sports at the park, siblings are fishing in the lake, kids are swimming in the pool, siblings argue and pick on each other......and my kid walks among them.

There is the world I go to where I can do nothing but wait, pray, think, watch, listen and surrender. In this world I am helpless against all that surrounds me. Then I come home to a world of chores that need to be done, meals that need to be prepared, groceries that needs to be purchased, lessons that need to be taught and discipline that needs to be administered. In this world I am responsible for all that lies in front of me. Often, when I am in one world, its priorities force out the realities of the other one. Sometimes when my physical presence is in one, my heart or mind is in the other. Somehow, I am a continual part of both worlds or they are both a part of me. It is a dichotomy I can not fully explain.

So you see why it was nice to have someone come be a part of my 'other world'. Even better that it was not only my brother-in-law, but also my brother-in-Christ to encourage me in my faith and remind me that all of this must be viewed with the backdrop of God's Sovereignty in place or my perception will be wrong.
___________________________

Although the appointment went well, CJ struggled all afternoon and this evening with side effects from the chemo. He has not been feeling well and he is really tired. The itching of his face started again and is driving him mad and causing him to be really frustrated because we can not seem to make it go away. He took three showers since being home from the hospital. We just don't know what is causing it and the fact that it happened without having had a spinal tap really confuses us. We thought it was related to one of the medications he receives during the spinal tap procedure but he did not receive that today. Hopefully, he will wake up tomorrow completely refreshed and itch free as the other times it has happened. Please pray we will determine what is causing this reaction so we can find him some relief and he won't have to endure this continually throughout his treatments.

On a better note, he is doing really well and enjoying his baseball practices. I was able to express my concerns to the doctor today about his inability to rotate his hips and run properly. She said that the baseball was just like physical therapy for him and would help him a great deal. That was a relief and a wonderful way to look at it. I am going to cling to that when I struggle with watching him at his games and am tempted to think it is too much for him.

Thank you to all of you who continue to press on in prayer for CJ and our family. We are pressing on in beating this cancer. Press on with us. We are so grateful for all the prayers and we hope to one day paint a picture for you of the fruit of your prayers. We see it constantly. We see the need for it and feel the benefits of it. We don't deserve them and yet we are grateful and greedy for them. Thank you! We have a lot of exciting news to share with all of you soon so keep posted! I will be updating soon.


By the way, today's added guest at CJ's appointment afforded me the rare opportunity to step back, take some pictures and record a bit. So now you get to come with us as to CJs appointment and understand a little more clearly what I am talking about when I say 'CJ had his port accessed or de-accessed'.

It may take a while to load the video so check back as I will be working on it today. Here are some pictures until we can figure out how to get the video up.




Sterilizing the port to be accessed.
She has the needle in her hand ready to go.
This is where CJ gets nervous.



Needle is in the port and she is about to start the chemo



Uncle Shawn putting cream on CJ's itchy face

13 comments:

Anonymous said...

C.J. you are an amazing brother in Christ! i always learn from you, thanks bud.

Andrea

Enzo said...
This comment has been removed by a blog administrator.
Anonymous said...

CJ, we're sorry you are having a bad reaction with your face being so itchy. We can only imagine how uncomfortable that must be! We are praying that you are feeling better today and enjoying the baseball game and concert.
We'll see you tomorrow at church.
Love, the Sedanos

Anonymous said...

Hi Dawn,

We are back now and so glad to hear that CJ is playing baseball and doing well. I am sure that finally being able to play baseball can also be a very good mental therapy for CJ. What a touching post Dawn. We tend to forget about how the family also suffers and the effects any illness can have on them.
We are thinking about all of you and keep you in our prayers
Lots of love,
Nicole, Alberto and Ana

Anonymous said...

Love the picture of CJ up top. He always looks so good to me. I'm glad the doctor told you the baseball practice and running is like therapy, rehab. How cool!! I'm glad Shawn was with you guys on Friday. I know how much all your kids love their Uncle Shawn and how much he loves them. I'm so grateful also that you had such a good nurse to do the access and deaccess so quickly.

It is Saturday at 5:00 p.m. and I know you guys were suppossed to go to a Marlins game and the weather looks really bad. I know that if you're rained out you'll be where you were suppossed to be.

I love you and I'm thinking about you and praying about each and every one of you as much as I know how.

Love Grandma P

Martha said...

Dear Dawn,

I am so happy about what the doctor said about baseball, it is really a blessing that baseball will contribute as a theraphy. I will continue to pray for CJ and your family. Have a blessed day!

with love,

Martha

Anonymous said...

CJ,
We continue to keep you in our prayers and are continually amazed at your courage. I once heard that courage is not the absence of fear,but facing your fear and walking through any situation knowing that God is with you. I know Gos is with you each and every day and I trust you will continue to rely on HIM to give you strength.
Mrs. Pino

Anonymous said...

Hey Guys,

Just got back from another little get away. We are trying to enjoy the last few weeks of summer before school starts! Our prayers will remain deligent for CJ and his full restoration! But, never the "old" normal, right! Your eyes and heart have been opened up to this new world and boy did GOD pick the right child and mother! He knew you were the right ones for this walk! Because you are not just walking through it, but listening to Him. Your blog, your services to others in the hospital, your testimony, your witness, your non-profit ideas and actions,. Your obedience is beyond a verbal description. To me, that is why God chose you! He knew you would go through this with not just yourself and your child in mind and heart, but embrace HIS plan for you. Just keep going, Dawn. Don't tell Him you can't, Don't give up. He is so proud of you! Remember, HE has been preparing you for this for years and years, before this cancer even formed! Thank GOD for you obedience in that time that you did devout to HIM. I know we, you, non of us will ever fully grasp the whole picture while we are still here. But, to me it is clear that you are reaching people worlds away and even right next door with this! Your sharing this with us and reliving some things you would probably rather push out of your head as soon as possible is life changing. Thank you Dawn, for your deligence, your strengh, your burden, your obedience.

Love,

Jacks

the Grays said...

“You just can't beat the person who never gives up.”
Babe Ruth

CJ,
I am so thrilled to see you are not giving up! You are tougher than anyone I know. Every time you walk on the baseball field, or step up to bat, you are a winner. Every time you get through a round of chemo, you are a winner. You haven't let this thing beat you and you are an inspiration to this old man and everyone else blessed enough to know you. Stay strong and NEVER GIVE UP!!!

mefea said...

Dawn,

I wanted to take a second to thank you for being faithful with updating us on how you, CJ, and the family have been doing. This last post really affected me... especially the part about feeling like you're in two different worlds.

Thank you for CONTINUALLY showing us more of your 'other' world, bringing us in, giving us eyes to see, and explaining it so that we can try to enter in as well. Please tell CJ that our prayers have NOT slowed down or ceased but they have ONLY increased in passion, faith, and persistence.

As time continues to go by may there be continued FAITH and GRACE for each NEW challenge that you all face. Thanks for keeping us in the loop and reminding us of what you go through so we can pray even better.

I LOVE YOU GUYS SO MUCH!!!

mefea said...

Dawn,

I wanted to take a second to thank you for being faithful with updating us on how you, CJ, and the family have been doing. This last post really affected me... especially the part about feeling like you're in two different worlds.

Thank you for CONTINUALLY showing us more of your 'other' world, bringing us in, giving us eyes to see, and explaining it so that we can try to enter in as well. Please tell CJ that our prayers have NOT slowed down or ceased but they have ONLY increased in passion, faith, and persistence.

As time continues to go by may there be continued FAITH and GRACE for each NEW challenge that you all face. Thanks for keeping us in the loop and reminding us of what you go through so we can pray even better.

I LOVE YOU GUYS SO MUCH!!!

Anonymous said...

We are continuing to hold you all up in prayer. Thanks for sharing with the pictures and about Uncle Shawn. Makes it special. Hope CJ continues to be able to do his very best with baseball. Our Jaxson eats, sleeps and drinks baseball. He also plays it. This is his first year at Middle School, 5th grade. Wishing you God's best blessings,
Mary Boggs

shawn said...

We miss you all already. Thanks for the prayers. We love you.

Shawn and Cara