I am and always have been a person of many words. I have often said too much when I should have listened more and seldom do I have nothing to say at all. But these past two weeks have been difficult for me. It’s been hard to find words to articulate what I feel to even those people that are closest in my life. Perhaps part of the problem is that at times I have simply felt nothing. Regargless of what I feel, still the days have been passing. Still I have placed my hands on Izzy’s precious body every night before bed and prayed for her healing. I have declared things I know to be true about who God is and what God does regardless of what I have felt. I have prayed, my heart has remained numb and the days have kept passing right along.
Monday afternoon I climbed onto the table of a tattoo shop and handed my wrist over to the artist as I looked away. Being a Monday afternoon the shop was quiet. The receptionist had just stepped out for lunch and besides the artist in the station next to us organizing his supplies, it was just my artist and I.
I lay quietly on her table and looked at pictures of her own child that hung on the wall. Pictures of her when she was pregnant, pictures of their family now. There was a stillness in the shop, a stoic presence that filled the air as soft music filled the room. As the needle began to press into the underneath of my wrist, over my veins, over the tiny bones that met my hand, tears began to run slowly down the sides of my face.
I thought of every needle that had ever been stuck in Izzy’s body. Thought back to every round of chemotherapy. Remembered how many times she had been cut into, how many times I had watched her feel pain. And as I lay there now on the leather table, quiet music, tears streaming down my cheeks, I wondered what it had all been for. All the times I had said: this is to kill your cancer, baby. This is to make you better.” Yet, here we were again.
Tuesday she had her tumor biopsy and they added on a lateral bone marrow biopsy to rule out the presence of cancer in there. Until they have pathology results all this talk of cancer was speculation. They needed to look at pieces of the tumor under a microscope to know for sure. Until they did that there was still hope they were wrong. There was still hope this tumor was benign.
She had a 1st grade music program the night of the procedures and she desperately wanted to be back for it but of course we couldn’t promise her she would. When we arrived at the hospital at 6am we learned they had us tentatively scheduled to be admitted because they didn’t know what they were getting into. The Radiologist told us he has done thousands upon thousands of needle biopsies but the way Izzy’s tumor was positioned between her kidney and spleen was going to be one of the most unique ones he had ever done. He was going to try but couldn’t promise he could get a piece of it. It was possible he would snip the spleen or the kidney and there could be some excessive bleeding. He just didn’t know.
It wasn’t until the next day that the pain hit. She came home from school and we started her on some Oxycodone to control the pain in her back from the bone marrow draws. Thursday I got a call from school that her back was still bothering her but after talking to the school nurse I knew it was something more.
I walked into the nurse’s office and could tell she was faking the back pain. I took her to the far back bed and she hopped up on it as I closed the curtain. I asked her if her back hurt and she nodded. Then I explained that I really needed to know the truth because I didn’t want to give her medicine she didn’t need if her back didn’t really hurt. She still insisted it hurt. Finally I leveled with her.
“I just wondered if maybe you were sad because things are kinda scary right now? I just wondered if maybe you wanted to be with mommy today and you thought if you said your back hurt that I would come get you?” She looked down at the floor and started to cry. She nodded. “Yes,” was all she said. I took her in my arms and told her we could go home.
We napped together that day and went to Starbucks to get a Mocha Frappuccino. She and I were both delighted just to spend the day together with snuggles and Starbucks.
Hours later I got the call. The first doctor called with the results at 5. The second doctor called to follow up with more information at 10. The pathology results have confirmed this tumor is officially relapsed neuroblastoma. Slowly coming out of shock from the past two weeks, I am nothing short of devastated. I listened tearlessly to everything they said and I just kept saying: okay and I know. Finally, at the end of the 10 o’clock call Dr. Weiss asked me, “So, tell me where are you?” Silent tears started to fall down my cheeks. “Well, she’s dying, isn’t she?”
“No. That’s not where we are now so you can’t look at it that way,” he answered.
“But you can’t cure her,” I replied.
“We have seen a lot of success in the drugs we use for relapse. Kids can sometimes go on to live for a couple years. You have to stay positive. You have to have hope.” We talked a bit more and then I hung up. We go Monday morning at 9am to sign consent for a clinical trial. Our only treatment options are clinical trials.
There really are no words to describe the way my heart is sinking lower and lower into my chest. The way it feels like to picture what my life would be like without her in it. And yet I know that I am a greater, fuller, more beautiful person having known her and having been given the privilege of calling her my own.
Three years ago I made the choice of making this journey very public because I wanted the world to know that God is faithful to walk through this kind of bullshit with us. And just because the bullshit happens doesn’t change for a second who God is. He is the Creator of the universe and He loves us so personally that He never abandons us. He is the Father of all fathers who sent His own son to die so that we might all spend eternity with Him. Forever. I have seen His fingerprint on this entire journey and I know it isn’t gone. He is here in the midst of this mess and this pain and this horror and He meets me where I am. Whether it’s each night as I lay hands on Izzy and ask for her healing or each morning when I open my eyes and think: there’s no way I can live this. He is here. And that’s the only way I will be able to live this.
This is not the journey I wanted for my life. I would give anything to have another path, any other path but this one. But this is the one He has called us to. This is the one He has allowed. I believe with all of my heart that He will redeem it. I just have no idea what that redemption will look like.
Blessings on you today and LIFE, many more years of abundant life, for Izzy. ♡