Saturday, February 27, 2010

When I was Young


After a long and nerve wracking day of chemotherapy on Friday, CJ is now home and recovering over the weekend. CJ went in early Friday morning to begin a new course in his maintenance phase of chemotherapy only to discover he is neutropenic (very low white blood counts) which puts him at high risk for infection.

That was a shock since he was fine the last time we had counts done and we have been going about business as usual. We are on a race to boost his counts between now and Wednesday since we are scheduled to leave on our first ever family cruise. I will share more about that amazing opportunity God has given us in the future. Unfortunately, the low blood counts were only the start of the roller coaster of emotions to come.

We arrived early Friday and for the most part things progressed as usual until they accessed his port. As he waited for them to get everything ready, (it all has to be a really sterile environment so it takes some time to set it all up) I saw the tears forming in his eyes and this broke my heart. He has been so strong in this area lately that sometimes I forget how extremely difficult this actually is for him and how far he has come.

Let me just say that you can usually tell when a child is getting his port accessed because that is where all the crying and screaming is coming from. CJ had difficulty in the beginning but he has really learned to manage the anxiety of the port access. I talk to so many parents going through this and read about so many other kids on their care pages, and the port access is a huge issue for many of them. For some it is the needle being inserted into their chest. For others it is the large tape that will cover it all and stick to their chest only to have to be painfully removed later. But for all of them, it is the reality of what it stands for. They are painfully aware that they are about to receive medications that will in all likelihood make them sick, or tired, or weak, or immune suppressed. It is all the port represents that contributes to the tears and anxiety.

As his tears rolled down his cheeks and my heart broke, I held his hand and he squeezed hard waiting for it to be over. The needle went in smoothly only to get no blood return. We were sure the needle was in and the port was accessed properly because the nurse was able inject fluids into the port. Nevertheless, it would not show blood return when she pulled back on the syringe. So after three attempts, which means three separate needle entries into his chest, and switching to a one inch needle instead of a 3 quarter inch needle, it still would not work. They still needed blood to get his blood counts done so they decided to draw from his finger to get that started while they worked on the port and tried to get the blood flowing.

In an attempt to unclog the port, the the nurse got him up and out of the bed and had him doing stretches, and reaches, and touching his toes, and anything she could think of as she pulled back on the syringe trying to get the port unclogged and the blood flowing. Still no blood return! My anxiety was rising a little and I was trying not to think too far ahead to the "what ifs". Thankfully, CJ has great nurses that really care for him and are amazing at what they do so that helped me stay calm.




Since he was able to receive fluids in the port they could still use it to put him to sleep for the spinal tap and chemo injection into the spine. They decided to insert and IV in his arm while he was asleep so they could give him another chemo med he needed.

This is when I realized why it was so important they get blood return before injecting the chemo. If for any reason the chemo medication he was receiving leaked even a little because of a tiny hole in the tubing or inadequate access to the vein, it would eat away his tissue and flesh and leave a horrific wound. Needless to say or detail for you here, it was a nerve wracking experience for both me and the nurse injecting the chemotherapy medication directly into the vein and praying it was going in okay. She kept stopping and checking his vein again and again and she flushed it repeatedly afterward to assure it was in completely. I was never so happy for it to be over.

After the spinal, while he was sleeping, I was standing by his bed and looking down at him and suddenly it really gripped my heart to see him laying there with the wires and needles coming out of him and the monitors beeping and counting his breathing in the background. I have stood over him like this multiple times now so it is hard to explain what I felt and why this particular time. It was not like the first times when it was all so scary and new and overwhelming. It was different. I don't even think I can explain it adequately other than to say it just seemed to hit me at that moment all that he is battling to beat this cancer. He does so well in between appointments that it is easy to lose sight of it all. We spend so much of our time focusing on helping other families and kids in this battle, but when I stood over him this week it was like, "This is my son laying here going through this." I don't know. I know this is not making sense. Here, you stand over him and maybe it can better explain what I felt.........




Once it was over and the nurse and I could breathe again because CJ's vein did not blow up, I stood by CJ's bed and waited for him to wake up. I could overhear the family in the next cubicle as they received instructions about what the next two years of their lives would be like now that their 11 year old daughter was diagnosed with cancer. I just sat there and experienced it all over again like never before. This child will be on a very similar protocol as CJ, so to hear the same things being repeated that we heard those first days was eerily reminiscent.

I remembered what it was like and how overwhelming it all was. I could not believe I was standing there over a year later as another family was just entering the battle. I kept thinking, What can I tell them that will actually help? What would I have wanted to hear from another mom that day? What would encourage me? Did some mom in the next cubicle overhear us that first day and feel the same way? So I waited, and battled the feelings of inadequacy and temptation to 'mind my own business'. Instead, I introduced myself and told them about CJ and assured them it would get easier. I encouraged them to lean on their faith in God and each other not their understanding of cancer.

As I sat back down in my own cubicle I wondered if I was totally honest. Does it get easier? Could I honestly say that I would I describe today as easier than a year ago or just more familiar and routine? I might have to rethink my approach before I start the mentoring program of newly diagnosed families.

CJ eventually woke up and the nurse decided to inject some medicine into the port and see if it would unclog it. We would have to wait an hour and if it did not work he would have to have a port study done, which would included dyes and scans, to see what was wrong and if he needed a new port, so lets just say I really wanted this medicine to work. After a few tries throughout the hour it was still not working. At the end of the hour the nurse tried one more time. This time dad was at home praying for it to work. She tried and nothing happened. Then she pulled back again and there was the most beautiful flow of red blood I had ever seen. The nurse was happy! I was relieved! And CJ was ready to get it out of him and go home! As I told you way back in the beginning of this journey when we were first introduced to ports, I never thought we would be praying to actually see blood. Welcome to the world of childhood cancer!

By the time we left, we were exhausted....CJ physically and me emotionally. On the way home, CJ overheard me receiving some really sad news about his poppa Enzo and my uncle. He was listening intently but looking out the car window. A few minutes after I hung up, he spoke quietly, "You know mom, when I was young, I don't remember life being so hard and sad." He's only ten! That is when my tears started to fall!


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Prayer Requests:

Please pray for a huge surge in his blood counts so we can move forward with our cruise next week. Please pray for a safe trip free from infection for CJ and for continued function of the port. Please pray for CJ's Poppa Enzo! I can't even put into words what we are feeling and how sad we are and how difficult this has been.
Thank you for your prayers and support of our family. We are eternally grateful.

12 comments:

Anonymous said...

We will pray for God's will to be done and for much wisdom and discernment for you and Chris as you decide to go on the cruise or not.
CJ, you have grown so much and even though you cried, you are so strong and a huge example to many. I know that life some times can seem really hard and it is, but also in the midst of the dificult times we learn to apreciate the blessings and good moments in whole new and deeper way, just look at you and all the joys that you have brought to so many in need. You have grown CJ, and we are priviledge to know you and love you.

XOXOX Claudia for the Abeggs

janet s. said...

Dawn, I know exactly how you feel as you look over your precious son with all those tubes in him as he sleeps. Except you have to go through it repeatedly. No, I don't think it gets easier; it only gets more familiar. Familiar because you know the routine, but not familiar "comfortable". Even though God is carrying you through the fire, it still hurts.
You and your family have been an instrument of God in my life. I echo Claudia's words, "we are privileged to know you and love you."
As I watched Al this morning while he preached God's word and saw the familiar light blue bracelet on his wrist, I envisioned the day we will all have a 'cut our bracelets' party to thank God for his provision over your family and healing CJ. I am praying for that.
Thank you for allowing us a glimpse into your life, painful as it must be to replay it.

Anonymous said...

Thank you for sharing this with us - we love you and are praying so hard! We love you, CJ! aunt Karen & Uncle Terry (the bug eater when you were young)

Anonymous said...

Dawn,

Seeing CJ so full of boyhood antics and life as usual it is easy to forget what you face on a daily basis. Thank you for specifics of how to continue praying for your family. God has a purpose for the wisdom He is instilling in CJ that is beyond his years. You are so far out of any comfort zone that the Lord is totally carrying you. Thank you for giving us a peak into your struggles; as Jesus refocuses your life He uses you to refocus all who read your blog. God bless you in this walk and may He grant you this cruise to regroup and relax as a family.

Continuing to pray for you whole family, Marianne Kelso

Anonymous said...

I completely hear your heart sister. We love our children and I know this has not been an easy journey for any of you. God has used you through out this journey in so many ways, and I am grateful that in the midst of this you can reach out to others and encourage them. Easier or familiar...but always hard. What a brave and wise little boy you have. CJ we are praying for your healing..Go to the land of WHY NOT and have a blast on your cruise...can't wait to see the pictures! Cookes

Rebecca said...

May the Lord give you wisdom and discernment for your potential upcoming cruise...Thank you for sharing your life so openly and honestly with us. You are such an example to me, and this blog and your family has been such a means of grace. The Lord has used you mightily, and continues to do so.
As it's been said already, it truly is a priviledge to know you, thanks for letting us share this burden with you and your family!
CJ, remember...being brave doesn't mean we're not scared, or that we don't cry. Bravery is doing something EVEN THOUGH we're scared...so thank you for your courage and bravery! May the Lord continue to strengthen you, and may the Holy Spirit provide you with faith for all of the good works He has already prepared for you to walk in...

We love you all, and are honored to continue to pray without ceasing,

Becky for
The Gonzalez Gang

Anonymous said...

It is difficult for me to find special words of encouragement...I cannot imagine the struggle that you and your family must be sharing. Dawn, I can see that you have a strong faith in God and as always it is my prayer that you keep holding to Gods love and comfort. For we know that it is through Him that we receive the guidance, strength and wisdom to some how find peace and even joy in our struggles. Your love and compassion is evident in the choices you make. Thank you for sharing.
Blessings,
Wilma

Anonymous said...

We are crossing all our fingers and toes and praying that CJ's counts are high enough for you guys to go!!!!! That is the scariest post I've read and I am amazed that you were able to remain so calm & collected through that. We're praying that his counts are good and that you guys make it to the ship early so you can relax and thoroughly enjoy every last second of the most spectacular adventure imaginable. We are soooooo excited for you guys...you so deserve this! (Don't forget to ask about the Neupogen if he's still low). Have an amazing trip!!!!!!
Sue, Yovany, Alicia, Anthony, Kenzie & Chris

Anonymous said...

Dawn,

I truly don't know how you do it except by the Grace of God. Looking at CJ, laying there like that, is heartbreaking.. I'm just glad he has been doing so well inbetween his treatments. I pray for his full recovery that this will be a distant memory for him one day. But, I know he will always keep his compasion and gift to serve others.

Have fun on the cruise. I wish I was going with you guys! Have a blast. I'll take care of mom, don't worry! Hey CJ, bring me back something!

Love,

Jacks

Anonymous said...

Dawn, I believe you will remember me. I am Carla DaCosta Carina's mom, we met at the Disney family retreat and again at Camp Boggy Creek. I don't believe you know but Carina went to be with the Lord on Feb. 7, 2010. She had a relapse after being 3 months in maintenance... The cancer came back so fast and spread so rapidly that nothing could be done for her, we tried different drugs, but in 40 days she was gone.
I know exactly how you feel, but I also know we have an awesome and amazing God that is ever caring and loving. Call me 954-673-6727, if you ever want to talk and hear what God did in her life. Love, Carla

Break the Mold said...

Carla,

Chris and I were stunned to hear the news of Carina. We remember delivering the Thanksgiving Box to your home and seeing your family at Camp Boggy and Camp ROCK.
We were in the Lymphoma support group together at Camp ROCK as they both were diagnosed with Lymphoma.

I can not thank you enough for sharing your heart and Carina with me today. I am privileged and honored. I have learned so much from you. God has used you to minister to my heart in His perfect timing. Thank you! You have changed my life. Thank you for your words of encouragement and faithfulness.

What a mighty God we serve! God is so good and faithful. Yes, we are cancer moms who have suffered loss and pain and yet we are standing arm in arm declaring that God is GOOD and FAITHFUL!!

I want the world to hear your story. It has changed my life and therefore the course of my children's lives.

May God continue to pour His peace into your hearts as you mourn Carina's passing into eternity.

May you continue to overflow with His love that it spills onto others as it did to me today. I am honored to know you and fight this battle alongside you.

Sincerely
Dawn

"Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God. For just as the sufferings of Christ flow over into our lives, so also through Christ our comfort overflows."
1 Cor 1:3-5

martha said...

Dear Dawn,

I always pray that this battle ends soon, that God protect your family and complete healing for CJ, Poppa Enzo and the other kids going through this. I know I have said this many times, and again I say that I can imagine your pain, actually I know it, I have practically lived it with you through this blog everyday, and I thank you for your faithfulness in updating each week, you have become part of my life, my heart and continuous prayers.

Be Strong, The Lord is in complete control, he has a purpose, we are his children, and he will never abandon you.

In Christ,

Martha