Sunday, April 13, 2008

6 months

6 months ago today our family piled in the minivan to go to my daughter's soccer game, as we so often did. Henry had been throwing up on and off for a couple of weeks. Actually, we all had, but he seemed to be having more trouble shaking it. He was acting like he didn't feel well and I was hoping that a change of scenery would help him get over it.

He didn't want to walk on the field. I was of course carrying the requisite chairs, snacks, cameras, and water bottles, and couldn't carry him. So I held his hand and half-dragged him, fussing, to our seating area. I let go of his hand to set up the chairs, and saw it. He walked straight into the ground. His cerebellum wasn't working, and it was instantly obvious to me. "Ohmygodhehasabraintumor" was the instantaneous thought in my mind, gone as soon as it came.

My husband, who had been more worried about his vomiting than I had been, saw the look on my face. "We need to go to the hospital now," I said.

In the lobby, my husband said, "What are you afraid of?"

"A brain tumor," I said. "But there's no way it's a brain tumor."

Except that it was. Our ER doc, efficient and gentle, broke the news within an hour. "There's a mass under his tentorium."

"What's a tentorium?" I asked. I would have of course know the answer if it wasn't my son's that we were talking about. He explained again, without the medical-ese.

"Are you saying that my son has a brain tumor?"

And the answer came, "Yes."

Six months. What a lot has happened, in six months. Two surgeries. Nine admissions. Five rounds of chemotherapy. Two stem-cell transplants. Four MRIs. Ninety days in the hospital. Countless doctor's visits.

But what a lot that has not happened. There are so many potholes on this road, things that probably don't make a difference in the long run, but definitely make life more difficult. Posterior fossa syndrome. Central line infections. Refeeding problems. Sepsis. Shunts. We had our own potholes, mainly our fever admissions, but after hearing the trials of other families, we realize how lucky we have been. How strong Henry's body is.

Tomorrow, almost six months to the day, he'll be discharged from his last chemotherapy admission.

How am I different, after six months? I'll probably never even know...I do know that I have more hope now than I have had for most of those six months. I've never been what you would call an optimist. I can't hide my head in the sand, as much as I would like to at times, and I can't sugarcoat reality for myself either. A realist. I haven't always had hope about this cancer, but it feels really good to have it back. Hope doesn't always take the stage of my blog posts - my dark times tend to come out. But I have a lot of hope...

And Henry...he is a totally different child than he was six months ago. That child is gone forever, but only in the way that all three year olds are different people six months later. He has grown so much, matured so much, learned so much in that time. He's gone from being an older toddler to a younger preschooler. I'm so proud of him.

Tonight I don't want to worry about where things will be six months from now. I just want to remember what we've accomplished in six months.

Here's to you, Henry. You've come a long way, baby.


Doctor David said...

Henry is an amazing kid with an amazing family. I won't ever forget Pirate Day, even though I was so late that we had to play trucks instead. Hold onto the hope!

Anonymous said...

And here's to you Henry's mom. For being the strongest, loving, and dearest person I have ever known.

Jen said...

Congratulations to all of you for making it through the six months- a couple of years from now you'll be able to see how much that time has changed you (probably in some unexpected ways).

You're an amazing family- everyone's hoping for you!

rlbates said...

Here's to your entire family!!!

Jaime said...

Henry sounds like a real fighter and a very special, amazing boy. And your family sounds like a great support for him. Congrats on these 6 months!

Anonymous said...

I'll toast to that!!!


Anonymous said...

Celebrate we will
Because life is short but sweet for certain
We're climbing two by two
To be sure these days continue
These things we cannot change

Lyrics from "Two Step" by DMB

TBTAM said...

Tears are in my eyes as I write this. My thoughts and prayers are wiht you and your family.

Anonymous said...

HOPE. It sounds as good as it feels. I am so glad to hear it again.
Miss Susan

Ten out of Ten said...

I usually end up not commenting because when I reread what I type I always feel like it comes across as hollow. I'm grateful Henry missed some of the bigger potholes, and you, Henry and your family remain in the thoughts of ours.

Anonymous said...

Congratulations to Henry and his strong family support system.

TBTAM said...

Just in case you're not bsy enough....You've been tagged.

make mine trauma said...

I have followed your journey but have not commented because unlike yours, my words seem to fall so short of expressing emotion. Here's to you and Henry and loving, supportive family and friends. May the road to the future be freshly paved.