The Plunge of the River

Remember the river analogy from Friday? Today the river plunged us off a 40 foot high waterfall.

The day starts off routine at the hospital (at least routine for us)...opthamology appointment, oncology appointment.

I take Jenson today since Doug has chemo duty the rest of the week. The opthamologist takes a peek at his MRI results for his eye area... "NO CHANGE VERSUS LAST TEST". While this isn't good news, it isn't bad news either. She checks his eyes and says they look fine.

We then head across the hall to the oncology clinic. Jenson likes going there to see "his friends", get a prize from the prize closet, snacks from the snack area, and his favorite movie "Cars".

They run his blood tests. Then they come in with news. His counts are too low to do chemo. He still has not recovered fully from the last chemo round. No chemo for at least another week.

This news is a bump, but just a bump. A one week delay isn't that big a deal.

The nurse tells me Dr Cavalier will be in to talk to us in a little bit and do his exam.

Dr Cavalier arrives with the MRI report in hand. She gets straight to the point, "We're going to need to look at other options because this chemo isn't doing what we need it to. He now has brain involvement as well. This means it impacts his central nervous system which controls your coordination ability, ability to learn, and talk. This is not good news. Once we have brain involvement, the disease is much more likely to come back if it does ever go into remission." She compassionately gives me a hug as I begin crying.

Talk about the river gushing and propelling you over a massive waterfall. Not only is he not getting better despite the fact we are on one of the strongest chemos (and the last chemo known to help bring his disease into remission), but his disease is now attacking his brain also and without a miracle will likely impact him his entire life.

I ask, "What are our options?"

She replies, "I have checked with collegues all over the world and they all agree another type of chemo, a close cousin to 2CDA, would be best. But, we are really in unchartered territory and this therapy is largely untested on LCH cases. We use it sometimes to treat acute leukemia cases that aren't responding. Our next option would be considering a bone marrow transplant where we test family members for fit. The most likely fit would be a sibling."

This news brings back gushes of tears as I'm reminded of the horrible image of Sydney hooked up to a machine trying to save her brother. Awful image. No one should ever have to be faced with those types of choices.

Dr Cavalier gives me a big hug and Jenson says, "Awh, mommy," and also tries to comfort me.

We will start with the other chemo option next week assuming his counts improve.

I say to Dr Cavalier as she's leaving, "I bet this is your least favorite part of your job."

She says, "It is."

I then say, "Hopefully you'll get to do your favorite part of your job with us someday."

Jenson and I leave the hospital and are driving home in our Prius. Jenson says, "What doctor say to you?"

I say, "She just gave me some bad news."

He replies with a slightly upset tone, "But what she say to you?"

I then realize he is mad at her because she made me cry. He must think she said something mean to me.

"Buddy, she didn't do anything mean to mommy. She just had to tell me some bad news about your test. You don't need to be mad at the doctor. She didn't do anything wrong," I assure him. My sweet little boy is trying to protect his mommy.

We arrive at home, and I break the news to Doug. We both weep. It is so painful to watch your child suffer - the most painful thing we have ever experienced in life. We want a miracle for him so desperately - a miracle from this evil disease. It's not fair. He doesn't deserve this kind of hell on earth.

Our pastor Chris comes over and listens to us and prays for us. We are thankful for others to lift us up in prayer as we feel so weak, so devasted.

So the river plunged our boat over the waterfall and has totally submerged us. We are trying to come up for air and find our boat to get back on, but the currents are really strong right now.

God, please rescue our sweet boy.