Down the Road …

Recently our local newspaper, the Sacramento Bee, published an article spotlighting the long-term side effects of cancer treatment.

Childhood Cancer Survivors

In the article, Emily’s own Nurse Practitioner from U.C. Davis, Kay Wells, discussed the risks pediatric cancer patients may face down the road.

When children are diagnosed with cancer, families fight so hard for them to make it; their lives are a gift. But the miraculous treatments that save childhood cancer patients can also, years after the fact, make them susceptible to secondary cancers and other health problems, a range of illnesses known as late effects. Now researchers are learning that those late effects can include not only the early development of the illnesses of old age but also the premature onset of frailty – the kind of physical weakness, exhaustion and low muscle mass seen more commonly in people of advanced age.

In fact, research shows that

80 percent of adults who beat cancer as kids have a chronic, perhaps life-threatening health condition by the time they reach age 45. More than half have heart abnormalities by that age. Another 65 percent have impaired lung function, and 48 percent have memory impairment.

Those are dismal words to read. But it’s not the first time we’ve heard them. When Emily was initially diagnosed, she was given a 90%-99% 5-year EFS prognosis. That dropped to 65%-80% after her CNS-2 (spinal fluid leukemia) was discovered and she didn’t respond to the Induction Phase as hoped. Relatively speaking, those are still good odds, especially when you factor into account all the prayer being poured out over Emily everyday. We are still expecting a 100% cure. But something that’s weighed on my mind ever since first hearing those statistics prompted me to ask Kay Wells about them earlier this year.

I asked, “What does 5-year EFS really mean?” EFS stands for Event-Free Survival. Tack on the “5-year” and what you’ve got is a 65%-80% chance that Emily will remain event-free (no death, relapse, or development of a secondary cancer) for 5 years. So the next question, “Well, what about after 5 years? What then?” Because I’ve looked at the statistics online, I’ve studied all the published journals and clinical trials and research I can find, and from what I can understand, the numbers don’t get better -they get worse.

Graph depicting overall survival of childhood ALL patients treated at St. Jude between 1962-2007

Graph depicting overall survival of childhood ALL patients treated at St. Jude between 1962-2007

Overall survival graph This graph shows the wonderful advancements in treatment, because you can see the vast improvement of cure-rate from 1962, when only 10% of patients lived beyond one year, to the present, when more than 90% of patients live five years. However, if you look at the top line, the thick black one, which showcases more recent patients (2000-2007), you’ll see that the overall survival rate, while better, still declines with time.

This is what was discouraging me earlier this year that I had to ask Kay about. She was very straightforward with me and said that yes, Emily will most likely face challenges down the road. However, we won’t know what they are until we get there, so there’s no use worrying now. She reminded me that we’re still trying to get Emily through treatment and to focus on that. She, and Emily’s team of doctors and nurses, are monitoring Emily closely to watch for any signs of problems -not just a relapse, but cognitive delays, growth delays, heart, lung, and liver problems, and so on. And they will continue monitoring her for the rest of her life.

Right now we have a little girl, a lovely, blessed, spirited little girl. We can snuggle her and tickle her and hug and kiss her. We can hear her laugh and sing and sass back. We are thankful for every single moment with her, and we cannot waste one second worrying about what the future may, or may not, bring. We will just keep praying. Praying she will be free of leukemia and suffer no long-term side effects. Because I know our God is bigger than statistics.

Would you pray with us for Emily’s long-term health? 

Advertisements

3 responses to “Down the Road …

  1. Thank you sis. I know this was hard to write yet it’s the second most common question I get about Emily. First being “how is she doing?” and I am thankful that you took the time to address the question of “What’s her prognosis long term?”. It’s a hard question as it’s one I choose to ignore. I too did a ton of research when she was diagnosed and my Melachonly, detailed brain, had more than it could handle. The wave of emotions that erupt when I think about the “what ifs” are crippling so I choose to pray and ignore. Not ignore as in a state of denial but ignore as in recognizing that I have no control over the outcome, and I must have Faith in her Doctors who love her so and have Faith in God who has Orchestrated our lives, and Emily’s life, from the beginning. He knows.

    I love you.

  2. I love you so much Chrissie. You, Emily, and the entire family are in my prayers everday. We’ve come a long way from February 8th, 2012 but still a long way to go and I am thankful we will go it together. With God and a lot of prayer. 100%

  3. I love you, baby – that last paragraph did me in. Like I texted you today, it had me crying in the chips aisle at Target! How appropriate for Emily! I know we’ve talked lots about this whole thing – and I’m sure that we will talk more about it because that’s how we both process things – but we also pray – and that’s the most important thing. I love you, Momma —

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s