Is She Terminal?

I have been asked this question (in various forms) several times ever since we have gone on a Make A Wish sponsored trip. I, too, was once under the belief that the Make A Wish organization only granted wishes for terminally ill children.

Last fall was tough for Catherine. She had been on chemo for about a year and the cumulative effects had taken a toll on her body. Her body was no longer producing enough platelets and her hemoglobin kept dropping, making her completely lethargic. Our low-energy girl had turned into a no-energy girl. We began getting blood transfusions and having to go to the hospital every other day to check her blood counts. These were scary times for us. I can remember her just sitting in my lap for hours, not even having the energy to play. How many three year olds can sit still for hours? I was so afraid that the chemo had weakened her body so much that she would not be able to fight off a common infection.

Then one day, during this time period, the oncologist told me we should sign up for a Make A Wish trip. Believing that those trips were only for terminally ill children, I nearly passed out, right there in the doctor's office. The only thing I could think of to say was something like "But you said she would most likely live through this cancer. Has she gotten worse?"

The doctor told me that Catherine will most likely live through this cancer and that Make A Wish grants wishes for all children with cancer. So, we contacted Make A Wish of Georgia and Alabama. In November we met with our "Wish Coordinator" and learned that they have "rush wishes" and "regular wishes." Rush wishes are one where the doctors feel like the child needs to have their wish granted within the next two weeks. Regular wishes are ones where the doctors feel like the wish could be granted in the next 6-9 months. The doctor makes the recommendation to Make A Wish and our oncologist placed us in the regular wish category (that was a relief!). Our Wish Coordinator also explained that Make A Wish grants wishes for children with any potentially life-threatening condition. They do not use the word "terminal."

That word "potentially" is ever present in our hearts and minds. Having widened our circle of friends & acquaintances to include the pediatric cancer world, we learn of a child dying from cancer about once a week. Some of these children are just names. But some are children whom we have come to know in the hospital, the clinic, or through social events for these kids. We are constantly faced with the fact that cancer sometimes kills children.

Plus, whenever Catherine seems to take a turn for the worse, no matter how minor, my mind strays into dangerous, fear-filled territory. I have gotten much better at capturing those thoughts and holding them at bay, but sometimes they still creep in and destroy my joy.

But I still need to answer the question which is the reason why I wrote this post "Is She Terminal?" I would say probably not. Her type of tumor (optic glioma) almost never metastasizes, or spreads. It pretty much only stays in her brain and spinal cord. At the time of initial diagnosis, she had a 98% survival rate. At her age and size, more children die from chemo related complications than the tumor itself.

We ended chemo on March 17, 2009. So, we got through chemo relatively successfully. It will take a full year for her body to recover from the effects of chemo. She still has some hearing loss and nerve damage which we hope will come back in time. But, she is OK. Her energy level has increased substantially since her chemo ended.

Now we are in a waiting game, praying that the tumor will not return. Her tumor has a 1 in 4 chance of relapse. Every relapse drops your survival rate in half. We have had two post-chemo brain MRI's, one on March 23rd and one on June 15th. Both revealed a "stable" situation.

Her initial tumor was 1.3 cm. Three months after we started chemo, there was no change in the tumor (no growth, no shrinkage). Six months after we started chemo, the tumor had shrunk down to 3 microns - or almost nothing. The tumor has remained at the 3 micron size ever since. That itty bitty remnant of a tumor could be dead cancer cells which will simply stay in her brain forever. Or, it could be dormant cancer cells which will awaken one day and start growing. Therefore, Catherine will need to have brain MRI's on a regular basis the rest of her life.

Most brain tumors relapse within 6 months of ending treatment. So, our oncologist leaves the chemo port in for 6 months in case we have to re-start chemo. We will have brain MRI's every 3 months for a year or two, and then (assuming those our stable), switch to semi-annual MRI's, then annual.

I feel pretty confident that Catherine will be fine. This tumor has been stable for a long time. But, Catherine also seems to have a very unlucky streak when it comes to physical health. All of her medical challenges are separate and unrelated (according to the doctors). It always amazes me that God chose to heap all of these medical challenges on one child, rather than spread the medical challenges around to a dozen children. It would seem more fair to me to spread the burden around, but who am I to question God's wisdom? I just have to be grateful that God has blessed us with Catherine, for however long we get to have her.