Thursday, March 20, 2008


I never liked inoculating my children. I read all the books against it when my children were small. I heard the horror stories of adverse affects due to immunizations. In fact, we had a living breathing example of the DPT shot gone horribly wrong in the form of a 30 something man who roamed our neighborhood in a protective helmet. He was the youngest of 5 boys and his retired parents shared with us how he had been given the DPT shot at 6 months of age. Later that day he began to convulse ending up mentally retarded and prone to seizures for the rest of his life. He could not read or write or hold down a job. His parents had even won a court settlement against the state of California for the damages done to their son.

I’ve listened to the debate on both sides, reading the information from our pediatrician and eventually I did inoculate all of my children, but not on the recommended time table. I waited until they were older. I always agonized over the decision. Of course, when each of my girls traveled to East Africa with their father, they were covered with the full range of precautionary immunizations, not to mention malaria medication.

But now, I’m thinking, inoculations may not be so bad…

Because I belong to a Ewings Sarcoma group e-mail list, I receive many studies and reports concerning a wide variety of areas of childhood cancer. The articles range from new clinical trials and drugs to how a child with chronic pain relates to his or her parents. Recently I read a report about the mental health of childhood cancer survivors and their siblings.

In conclusion the article stated:

”Compared with population norms, siblings fare better in physical function and general health, and both survivors and siblings report better mental health than does the general population, as well as high levels of current life satisfaction.”

“We could explain our findings as ‘‘posttraumatic growth’’ or the psychological resilience that develops in coping with adverse circumstances (36, 37). That is, experiencing childhood cancer or being a young sibling of a sister or brother with cancer inoculates individuals to other negative life experiences and provides them with feelings of life satisfaction and overall psychological well being.”

Even though it’s been out of my control, all of my children have been inoculated with “life satisfaction” and “psychological well being.”

Is this one small piece of silver lining in the storm cloud? I hope so.


Friday, March 14, 2008

I keep secrets from my son...

(I have used initials instead of names for family privacy)

The phone rang on a late afternoon Monday. It was M… MK’s daddy. “I have something to tell you before we post it on MK’s website. There’s enhancement on her latest brain MRI. "

My mind froze. I couldn’t grasp the words. He continued, “I wanted you to know before we posted it. You said you feel like you are surrounded…”

(I felt so humbled realizing they were thinking of me during a very difficult time for them. That phone call says it all...)

No, not MK, sweet precious MK, my mind raced. MK who called Joshie one night to say “good-night”. Forever in my mind, pink tutu-ed MK, with matching boa around her neck, so bright and enchanting. Just her voice makes me smile. MK who sees and talks with angels. Please Lord, not MK, my heart cried!

First there was G…”pathology reports confirm that the mass is Ewings Sarcoma”, then L…”the pathology report confirms that the tumor is indeed Neuroblastoma”. Now MK? We still don’t know about MK. Things are looking more hopeful, but still they wait to know for sure.

All three of them victims of cancer and not only that, but two of them (G & L) now confirmed as cancer RELAPSE …the return of a monster. These parents who are no longer innocent to the meaning, what must they feel? How are they coping? Tears slide down my cheeks.

Josh knows and loves and prays for each of these children. I close my eyes and see Josh and G riding their IV poles down the hospital corridors together. I see them playing in the Josh’s House in the Trees.

During two summers at Camp Agape, L’s infectious giggle highlighted our days together. Sometimes she ignored Josh; sometimes she sought out his hugs, always her own person. L with her brown skin and round cheeks, so full of life.

MK, oh how my heart cherishes MK. How can an adult spirit live inside a three year olds body? Seemingly so wise beyond her years and yet still a child, laughing as she runs, playing with her red headed brother! There is just something about MK. Our families shared a cabin at Camp Harlow. Josh thinks she is so cute.

I keep secrets from my son. He does not know about relapse.

I’ve wonder if this is right. He’s nobody’s dummy. As we prayed together one night, he said, “Mommy I think there is something you aren’t telling me about L and G and MK.” He knows, but I am at a loss as to what to say. I don’t want to fill his heart with fear, fear of the monster coming back. Fear of losing a friend.

I was at a meeting last night for cancer families. It’s been a long time since I’ve gone to one. They are ALWAYS emotional. The topic was “Helping Your Kids Cope with a cANCER Diagnosis” (No, that’s not a typo--I will NEVER capitalize the “c” word.) Afterward, I spoke privately with the counselor who led the discussion asking her for advice on what to tell my son. Basically she said to tell the truth, because kids are smart and they know something isn’t right and their imaginations will fill in the blanks with wild ideas. The truth is best, she said.

“But what about filling him with fear?” I asked. "The fear of the cancer coming back?"

“Well, you know relapse is rare. Just tell him it’s rare and you don’t expect that to happen to him.” She answered.

“RARE!” I exclaimed! “It doesn’t FEEL like it’s RARE! I see kids relapsing all around me!”

“I know it feels that way." She replied. "Maybe you need to find a balance. Spend time with non-cancer families too.”

I was quiet, knowing that I do spend more time with non-cancer families than cancer families. I don’t expect Josh to relapse, but that thought is always there. Constantly niggling in my mind, hanging around like an obnoxious house guest. You want to just shove them out the door, tell them to get lost, give them a quick boot in the behind…but somehow they creep back in…

So, I’m waiting for the perfect moment, asking the Holy Spirit for the words and waiting for Josh to be ready. He feels so empowered by God. He feels like he is a miracle, a testament to God’s merciful love and healing power. Will the truth take that away from him? Or is it me? Will I transfer my fear onto him?

I need wisdom.

I keep secrets from my son…