Friday, May 8, 2015


On Monday I had a routine scan that revealed some growth of my tumor.

At first glance, those are horrifying and gut-wrenching words. That is what we have been praying wouldn't happen for the last two years. That's the nightmare. At least that's what it was for the first half hour after I heard about it and ugly cried in my kitchen. 

I got the call on Wednesday, which means that I had a couple days of waiting for results before I got the final word. I've said it before and I will say it again: waiting is the WORST. It's the absolute worst. It turns me into a catatonic zombie retail therapy monster that I hardly recognize. I feed myself distraction after distraction to placate the rising levels of worry, and it only kind of works. I feel like with all the effort I put into distracting myself, it should work a little more than it does, but nay. So after a couple days of rising anxieties with many failed attempts to quiet them, I was relieved for the waiting to be over. The anxiety of the waiting was greater than the anxiety of the growth. 

What I felt instead was big sadness.

And that sadness was brief.

Two and a half years ago we thought that we were going to have to start treatment during pregnancy. And then we thought we were going to start treatment after pregnancy. And then we never had to start it because it remained stable for the next two years. We have already spent the time we needed feeling all of the overwhelming emotions and worry and fear that comes with having to start treatment. And those overwhelming everythings were not fruitful the first time, so my mind and heart just skipped them. 

I went from sadness to peace. Almost instantly. Well, sadness to sobbing to catatonic to peace. Or something like that.

And when I told John he did about the same thing. 

We aren't scared.

It's not a scary thing to us anymore. It's still a constant kind of sad and disappointing, but not scary or overwhelming. 

After spending some time with my oncologist on Friday, we feel confident that this is a road that we are willing to travel. This is a road that will be manageable for us to travel. This is a road we are prepared to travel. 

The treatment I will be starting is a targeted treatment. It is nothing like chemo. It works by blocking signals that the body sends to the tumor to make it grow and by blocking new blood vessel growth to the tumor. That's in contrast to chemo which stops all rapid cell growth (even good cell growth) and creates big bad side effects. The side effects for this drug are much more mild than chemo. More like any other medicine really. Fatigue is the most common side effect, with the other runners up sounding a lot like pregnancy. It's a pill that I will take from home once a day, and I'll go in to the clinic for check ups with oncology every now and then.

We are thinking of it as a maintenance treatment. My oncologist said that I will be taking this as long as it is working. No rounds of treatment, just taking it as long as it works. 

This is a very uncommon kind of cancer treatment for a very uncommon kind of cancer. It's more like I will be starting a tricky maintenance medicine than starting cancer treatment. At least that's how it seems from this side of things. 

There's been one study using this particular drug with the cancer I have (reminder: I have a very rare kind of sarcoma called Alveolar Soft Part Sarcoma. The sarcoma specialist I see at Vanderbilt only treats a few patients every year who have it). Of the 10 participants that were enrolled in the study, 5 people's tumors shrunk, 4 people's tumors did not grow or shrink, and only 1 person's tumor grew while on treatment. Y'all. That's awesome. 

I've had this cancer 5 times. When we first found it I was 2 and had it removed followed by a year of chemo. Real chemo. Since then we learned that chemo isn't very effective in reducing the size of these tumors and that removal is the only option. My sweet parents have been praying since then that there would one day be a drug that I could take should something like this ever happen. And now there's a drug. That's been studied. And that is available to me. The Lord has gone lightyears ahead of us to prepare our way. We are standing in this moment looking into the next few steps feeling humbled by the options that lay before us. 

We have some decisions to make in the next couple weeks about where we want to take the drug. We will be having some heart to heart talks with our  insurance company to price out a couple options we have, and will decide when we have more information. Either way, it looks like I won't be starting it for another 2-5 weeks. 

I don't see this moment in our lives as a "tell everyone you know to pray" kind of moment. We want our friends and family and for their friends and families to be praying for us and for our support circle. But overall this feels like a very small step in a very long journey that we've been walking for quite some time already. So many people have joined us on our journey and invested time and prayer into our story. For all those people and for all those in the future who can be blessed by our story, we want to keep telling it, even as it unfolds. 

This isn't the nightmare that we thought it would be. We are prepared. We are hopeful. The power of God that raised Christ from the dead is living in us. And just as he raised Christ Jesus from the dead, so he will bring life to our mortal bodies by that same Spirit living within us. And we feel that Spirit ever near. 

Pray for wisdom over the next few weeks, for gentle guidance and for overwhelming peace. 

Thank you for joining our journey. 


  1. It's hard to believe you were only two when the cancer was first discovered. You must have been a mature 2 year old. I thought you were older. I still remember you showing me the lump the first time when I was babysitting you. You and your family will be in my prayers as your journey continues. I already tried to post once, but it disappeared. So if it made it, just ignore this duplicate.

  2. Strength and peace to the whole family.

  3. I am standing with you.

    As my mother says, "We rejoice in every good day. And we look to God to carry us through those that are not."

    Sending love from Texas.

  4. Thank you for sharing your journey. You bless us all with your words. We will continue on praying as we always have.