Friday, October 31, 2008

Another bit of damage done...

We just discovered my son’s vocal chords have also been damaged by the radiation he received almost 4 years ago. They don’t open into a wide “V” as they should, which is why he sounds like a loud Kazoo while breathing at night. We just removed his trach tube and were hoping we could sew up the trach hole, but with the injured chords, we first need to find out if he’s getting enough oxygen and REM sleep at night.

This new revelation threw me into an angry tizzy. You’d think by now I could weather the storm better. But the anger and loss seem to keep mounting. I was angry at the doctor for not listening to me. I was angry at the oncologist for patronizing me. I was angry at my husband for agreeing with them. For my husband’s sake, I realize it was his optimistic nature kicking into overdrive hoping above all hopes that everything was fine. I forgive him. I forgive the doctors. Life goes on.

I read parts of a book today titled Childhood Cancer Survivors: A Practical Guide to Your Future. As I read the section on emotions, I was validated in many ways especially in the sections on anger and grief and loss. As I said, the losses seem to keep piling up and the anger seems to suddenly consume me.

Quote: “It is now known, however, that survivors and their families often face many physical and psychological challenges after cure.”

Yes, we have been dealing with serious physical complications due to treatment since we began the cancer fight. And we aren't even considered "cured" yet!

Quote: “You will probably experience a range of strong emotions as you adjust to your after-cancer life; these can include fear of recurrence, anxiety, guilt, anger and grief as well as gratitude and joy.”

Anger and grief, I seem to be stuck there.

Quote: “These perfectly normal feelings are sometimes viewed by others as a problem when they are actually a natural response to a life-changing event. It is important and necessary to acknowledge these feelings in order to deal with what cannot be changed.”

Interestingly, the “physical and psychological challenges” can be present for the rest of the survivor’s and family’s life!

Then I read my devotional this morning by Oswald Chambers focusing on “Faith as small as a mustard seed…” Matthew 17:20. Chambers writes “We have the idea that God rewards us for our faith, it may be so in the initial stages; but we do not earn anything by faith, faith brings us into right relationship with God and gives God His opportunity. God has frequently to knock the bottom board out of your experience if you are a saint in order to get you into contact with Himself. God wants you to understand that it is a life of faith, not a life of sentimental enjoyment of His blessings.”

He went on to write, “Faith by its very nature must be tried, and the real trial of faith is not that we find it difficult to trust God, but that God’s character has to be cleared in our own minds. Faith in the Bible is faith in God against everything that contradicts Him—I will remain true to God’s character whatever He may do.

So how do I join these two? What does “faith” have to do with “physical and psychological challenges”?


As I struggle through the “strong emotions” of my life and my family’s lives being forever altered and changed, because of childhood cancer and as I find new “physical damage” done to my son, because of the treatment he received; I know God is at work in our lives. He is faithful, because of His character, which has proved itself to me over and over again, and I realize…

Another bit of healing made…

Monday, October 20, 2008

The tentacles of childhood cancer...

On the day Josh was diagnosed, my world went black, thankfully, I didn’t know then what I know now. If I had, I don’t know if I could have made it. Childhood cancer has far reaching tentacles that seem to grab a hold of our lives even years later, even when the victim lives, even when the family is strong and whole (not perfect, but whole) before the cancer struck, even when Christ is present at the family’s center and their foundation.

I have been dumbstruck as my two oldest girls in particular have survived the trauma of watching their little brother suffer through agonizing treatments seemingly without scars; only to launch out into the world and then make mind-blowing choices. Choices obviously connected to the past pain of childhood cancer, even if they can’t see it.

As a parent, it seems my once whole, healthy, loving family is being ripped away, changed forever in a way that’s completely out of my power. I know I can ONLY control my own thoughts, words and actions, but I ache as I see their confusion and the far reaching implications of their choices. It’s as if childhood cancer permeated every facet of our lives, even affecting my husband and his work abilities. Yet, I will not put all the blame and responsibility on cancer, for that would give it too much power.

So, we, the remaining five of us at home are beginning family counseling. We are seeking the help of an expert who has dealt with families who have gone through childhood cancer. We are seeking the help of a woman with years of experience and more importantly, a woman of faith. We can’t keep hiding from the effects on our psyches, our souls, our very beings that fighting childhood cancer has brought. We are going to face this head on.

I cannot push another one of my baby birds out of the nest only to watch her break her own wing.

I called a trusted social worker at the hospital where my son was treated asking for an excellent reference in this area. After the information was given, I went on to inquire, “Gina, may I ask you a question?”

“Yes”, she replied.

“Have you EVER seen a family, even a strong family emerge from childhood cancer unscathed?”

After a brief hesitation, she replied “No”. As she went on, she said,” A childhood cancer diagnosis is a momentous, life changing event. Everyone is affected. No one escapes.”

Then she began to tell me story after story of cancer survivors and siblings who made decisions very similar to what my kids were making. I don’t know if this helped me, other than to know my girls are “normal”. I can only pray for them, knowing God is in their midst, working out His truth and best in their lives. They make their choices whether healthy or not. He intercedes with His love and grace, crying along side of their brokenness. I know kids leave home and despite the best upbringing they will make mistakes. But for families like ours they have been tainted by a harrowing event called cancer.

I release them, my children, into God’s hand with much prayer and trust. I keep the communication wide open. Of course, they will always have our support and love. I allow them to fall, to fail, to get hurt, but I’m angry at cancer. I’m angry for the shock and pain, anguish and insecurity it has caused us. I am enraged at how it’s still trying to devastate my family.

I trust in my Savior, not for a safe and secure journey, but for His love and grace, mercy and hope to fill us completely. There’s nothing more I can do.

I pray, for my family’s benefit, God’s sword of truth will cut through those far reaching tentacles of childhood cancer…

Thursday, October 9, 2008

I never knew...

I never knew how much having a tracheotomy impacted my son. I mean, it’s just a small tube inserted into the hole (stoma) in his neck that leads to his airway (trachea) enabling him to breathe. Despite the trach tube, he was mobile; he was active and seemed happy. After all he had lived with this thing for three years.

I vividly remember the two weeks before he had a tracheotomy. My husband and I had not slept as we watched over each of our son’s breathes, especially at night when his breathing made him labor and sweat like a marathon runner. We called 911 once. We ended up in the ER a couple of times and finally the doctor said he needed a tracheotomy. I was so torn. I was in agony for my son.

As Josh sat small and agitated on the hospital bed, the doctor walked into the room and gently explained how he was going to have to cut a hole into Josh’s neck so that he could breathe. Silent tears flowed down Josh’s cheeks as he began to understand what the doctor was telling him. Then Josh laughed as the doctor shared how he’d be able to blow bubbles from the hole in his neck, a feat no one else can do. And Josh continued to giggle as he pictured the bubbles floating away.

Adjusting to a tracheotomy was difficult. First Josh was in the Pediatric Intensive Care Unit after surgery. There were machines to get used to; suctioning of mucous secretions and a mist air compressor to hook up to at night. We had many supplies to order from the home health care company, but he was not on a ventilator and he was ambulatory. So we grew familiar with his needs and he grew comfortable with our care as his parents and time marched on.

Now the trach tube is out! And I don’t recognize my boy. I don’t mean physically, I mean his spirit, the essence of who he is; his countenance, his being. Yesterday, I watched as he ran at school recess like a long distance runner with great form and power. I marveled as he tackled the rock wall in his rock climbing class with strength and vigor I didn’t know he had. His first class was only one day after the trach tube removal and he challenged himself each climb, intently listening to the instructor’s directions and encouragement.

He has a confidence I never knew existed in him before. It’s as if the removal of this tube is the last visage of being sick with cancer; the last reminder that has been eradicated, pulled up and thrown out like a weed.

I knew my son had strength and courage, because he’s been through so much. But now he’s a different boy. He’s so smart and athletic and powerful. This is a side of him I’ve never seen, because it’s been hidden by cancer. It’s been concealed by four years of medical trauma. I marvel at who he’s becoming and I am thankful.

I never knew…