Nothing We Do

When I was a little girl about Izzy’s age I had big brown eyes and dirty blonde hair. I see myself in her as she explores each summer day with her whole heart. Caterpillars and lightning bugs, butterflies and hummingbirds. Rocks, trees, the creek. Like her, there was nothing I was afraid of. Nothing that could stop me from being a child.

As I grew up life deposited seeds of expectation within me. I began to hope for things as each season of life drew closer. Like most of us, I had a picture of what my grown-up life would look like. The white picket fence and all that. In my picture I saw my future self standing at a kitchen sink doing dishes, towel draped over my shoulder, suds up to my elbows. That self watched her children play in the front yard through the kitchen window. I can see ever so clearly the perfection of the house, of the street, of the life. I can see the perfection of the children playing in that perfect yard, on that perfect street, in my perfect life. Those children played fiercely. Those children were afraid of nothing and nothing could stop them from being children.

But I grew up and of course did not get the life I envisioned. In my real life I seldom actually do the dishes and even if I did there isn’t a window above the sink where I can watch the kids play. But most importantly my children are agraid of things that I cannot protect them from. There are things that can prevent them from being children. Things like cancer. Things like death.

At this point in the game what I most want is for Izzy to get to be a child. I want her time to be spent playing, not laying in a hospital room. Not hooked up to an IV 24 hours a day at home either. I will never stop fighting for her but I will not ask her to spend every breath fighting. It isn’t fair.

That first round of chemotherapy hit her so hard she spent 5 days in the hospital recovering. And they wanted to send her home on IV nutrition 24hours a day. They wanted her dragging around an IV pole at home to be sure she was boosted up enough to get knocked down again.

It just seemed too hard and I didn’t know what to do so one evening I sat down with our oncologist in the parents lounge for a hard talk. I stared at the floor as he spoke, “I want you to remember that this trial is not going to cure her. The trial isn’t looking for a cure. There is no cure. She could get in remission on it but she could also get in remission just on chemo alone.”

Tears filled my eyes and began to wash down the front of my face as he said the thing I was tired of him saying, “So you do think remission is possible?”

“I do but getting there can take a while and we just don’t know how long she will stay there. It will come back over and over again until either you are done fighting or it takes over.”

I sat with him and talked and I cried and I cried. Other parents came in and out to get their dinners out of the fridge and I just sat quietly in the corner listening to him in his white coat.

“Molly, there isn’t a right answer. There won’t be a right way to do this. You just have to decide what you think is best for you and Izzy. And clinical trials aren’t right for everyone.”

That night Kendrick and I talked and decided to pull her from the trial. It was the first time in the several weeks I have felt peace. Real, true, God given peace. Peace that says: walk forward in this for it is good.

The plan was to pull her from the trial drug but keep her on the two chemos she had started on. But they could both be given orally at home and shouldn’t hit her so hard. To be sure that the chemos she was on were still good options for us our oncologist wanted to do scans again. He wanted to do another MRI of the abdomen to see if there was any growth and do a full body MIBG (neuroblastoma specific) to see if there were any new spots elsewhere. If there was no progression of disease we could continue with these two chemos. If there was progression we would need to find other chemos to try.

The MRI results showed no change in the size of the original spot. It had not grown. This past Wednesday we had the MIBG looking for neuroblastoma activity elsewhere. They called late that night with the results. It wasn’t our primary oncologist that called but the third year fellow that has been with us through our entire journey in Cincinnati.

“Well, it’s good news, Molly. The scan was not MIBG avid,” he sounded confused and now I was too.

“What do you mean?”

“The scan showed no spots of neuroblastoma activity. None. Not even in the original spot,” he still sounded confused and so was I.

“What? How is that possible? I mean, there wasn’t even question that there would be activity there. The question was if there was activity elsewhere.” He laughed.

“I’m not entirely sure. I suppose it’s possible the one dose of chemo took it out or it’s possible there was a technical problem with the way the scanner read. But that’s not likely. I, I’m just not sure quite honestly.” We agreed I would need to talk to our primary oncologist to get all my questions answered and he was out of town.

It is hard to capture the very emotion that I felt during that phone call. I could breath again for the first time since I had seen the tumor on the computer screen and yet part of me was afraid to breath. I felt joy and then moments later I was afraid to feel joy.

The truth is, this was a big week for us. On June 25th, 2012 we found out that neuroblastoma was back for the second time. Three days later, on Carter’s birthday we found out it was Stage IV. In the middle of that, on June 26th, was my own birthday. As we grow older birthdays aren’t as important as they used to be. But mine is so significant to me now, in a not so good way. I relive so intimately those emotions that came with re-diagnosis the second time. And I think of how many times my birthday has passed and I have not appreciated it. I think of my own beating heart, my own healthy body that I have taken for granted and I wish I could give her those years. How I would give anything to give her the years I have not appreciated.

Yesterday I finally got to talk to our primary oncologist. Honestly he couldn’t explain the clear scan either but did seem confident that it was correct. That there is no sign of neuroblastoma activity in her. He wasn’t expecting one round of chemo to knock it out but said that had to be what it was. What else could it be?

I don’t have a label for what we are or where we are. They aren’t comfortable calling it remission just yet but there isn’t sign of the disease. They want us to continue on with our chemo plan but we don’t know for how long. We continue to exist in the pause but we have moved further away from this horrible disease and for that I am eternally grateful.

There is so much we don’t understand about life and about death. So much we don’t understand about the workings of our world. But if we are really honest – really, truly, painfully honest, we have to acknowledge that there is much we do not understand about God as well.

Do you know how many times I have layed my hands upon Izzy’s fragile body and asked for her healing? But do you know how many other parents have done the same and their children haven’t been healed? Their children have died. Their children are dying. If we want to believe that God still heals today we have to also be able to embrace that there is no formula for it. That there is nothing we do correctly to prompt it. That His plans for our lives are so much bigger than we can ever fathom that sometimes the healing comes and sometimes it does not.

I thank God with every breath I take that Izzy is alive. I thank Him for this most recent news that seems puzzling to the medical community. Because it very well may be a result of what He has done. But it is not a result of anything anyone here has done. We cannot get wrapped up in this language of saying, “We prayed and God answered.” That language is hurtful, confusing and creates a block between God and those that have not seen healing. So, no, you will not hear me say that we prayed and He answered our prayers and do you know why? Because I have to look other mothers in the eye whose prayers have not been answered.

When I started writing three years ago my purpose was to allow God to be glorified through our journey. So that I could share His goodness and His constant pursuit of us through the darkness. And I still write for the same reason. Yes, I believe we serve a powerful God but, no, I will not use language that isolates people from the Lord and leaves them alone in their pain. I do not understand so, so much about what He does and doesn’t do. But I can tell you so much about who He is. He is faithful. He is constant. He is hope. He is love. He doesn’t just give us what we need when we need it, He is what we need when we need it.

This week I celebrated my 36th birthday. This week I also cautiously celebrated hope for Izzy’s life. I have no idea what this road has for us around the next bend. We will continue with chemotherapy, we will continue to pray with desperation and we will continue to believe that anything is possible. But not because of anything we do. Because of all the things we just can’t understand.

Blessings on you today and LIFE for Izzy. ♡