Matters Of The Heart

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This past week Izzy has carried a nervousness that has been both heartbreaking and expected. She has cried about things that I cannot fix and asked questions I cannot answer. I have tried my best to circle around her inquiries drawing attention away from that which I do not know to that which I do know. “Your eyes are the most beautiful thing about you baby, you don’t need hair,” and “I don’t know how long we’ll get chemo for but I will be right by you through it every single day.” Sometimes my efforts have been successful and sometimes they have not.

Monday night we were coming in from playing and she was being extra delicate about something. I picked her up and carried her into the house, asking what was really wrong. “I just can’t get my mind out of the idea that I have cancer,” and she buried her face in my shoulder and began to cry.  “It’s all I think about,” she muttered. And so I realized that I had to find a way for it not to be the only thing I think about. I had to find a way to not walk around in sadness all the time. For her.

That night she slept with me and I prayed the Lord would consume her with a supernatural peace as she slept. I prayed He would take her every thought about cancer captive, freeing her mind to be a child.

Yesterday she had a port placed in her chest. It will provide direct access to her heart for this poison we call chemotherapy. There were problems placing it, the first location they tried had too much scar tissue built from the last tine she had a line place so they had to go in through her neck instead. Is that too graphic? Imagine how I felt when I walked into the recovery room to find her beautiful hair saturated in dried blood. Saturated. Her eyes opened and as soon as they met mine she tried to speak. She was in pain. Her mouth was dry from the breathing tube and words weren’t coming out but the tears falling down her cheeks told me what she was trying to say.

The nurse began to scroll down what she had been given in the OR and I kindly acknowledged the list. She then asked if I wanted her to be given a dose of Fentanyl or IV Tylenol. Hmmm, they just cut into three different places of blood vessel and proceeded to stitch a piece of plastic to a muscle underneath her skin – let’s go ahead and assume we’re past the IV Tylenol. But a simple, “Fentanyl,” was all I said.

Her vitals were off for a while. I chatted with old nurses we used to know. But through it all I managed to keep it together on the outside, in spite of what I was feeling on the inside. Until we were wrapping up and the nurse handed me this:

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If you don’t know what it is I’m happy for you. It is a CVC (Central Venous Catheter) Emergency Kit. Anyone with some type of line that goes to their heart must have one with them at all times. I carried one in my purse for a year and a half. We had one in each of our cars. Anyone who took Izzy anywhere had one. On the oncology floor they are everywhere. They hang on every IV pole as a precaution. A child can’t even walk down the hall without one.

So when the nurse handed me one yesterday and said, “I’m assuming you know what to do with this,” it just hit me in one culminating wave of trauma from the past and fear of the future. You see, I do know how to stop my daughter from bleeding out, should the line be ripped from her chest. I do know how to replace her g-tube should the one in her stomach now be pulled out like it was once before when it got caught on a blanket. I am not a nurse but soon I will be giving her shots at home and taking her blood pressure regularly. They have taught me more than I ever wanted to have to know.

But you know what no one has taught me? How to walk on this path now. How in the hell I walk forward every single day full of hope and fully present with Izzy, never missing a moment, when in my heart I am consumed by grief and despair. No one shows you how to walk forward authentically, not pushing down the hard stuff, but still clinging to hope, still clinging desperately to the possibility that this may not be the beginning of the end.

When Izzy finally woke up and began looking around her pain was much more controlled. I was trying to carefully clean the blood out of her hair without disturbing the wound on her neck. Together we looked down at the port that is hidden closely under skin right above her heart and she started to cry.

“What’s wrong, baby? Does it hurt?,” I asked stroking the strands of precious hair away from her face. She shook her head.

“I don’t like it. I want it out of me,” she wept. I tried talking to her but she just cried. “When can it come out?” My heart broke then and there because according to the doctors it never will. I am trying so hard to hope for more, to believe that God has more for her and that He will deliver her once again. But I just stood there, silent, stroking her hair.

As I put the CVC kit in my purse it felt like an acknowledgement of where we are now. I remember how freeing it was a year and a half ago to throw them all away. I hid it in the very bottom so I couldn’t see it, still not wanting to believe chemo would be starting in a little over a week, her hair would fall out and her suffering would begin. Yesterday I read the first chapter of a book that is all too familiar and I hated it.

I want more than anything to embody a grace, a peace and most importantly a hope that overflows to Izzy through this hell. I have to figure out a way to keep going, to keep fighting, to keep believing she can be healed because she needs me to.

Blessings on you today and LIFE for Izzy.

Holy Consent

For as long as I can remember I have wanted to change the world. I have longed to help those that have great need, longed to bring justice to places there was none and wholeness to places that were broken. The Lord has given me the heart of compassion, the spirit of an advocate and the soul of a warrior. I have gone the places He has called me to and fought for the people and the causes He has put upon my heart. It is just who I am. I am a sinner, saved by grace, I drink too much wine when I’m stressed and I use more profanity than most of you would find appropriate. I’m no one special but I’ve always wanted to change the world.

Reality is setting in and the days are getting harder. I watch Izzy playing in the yard, riding her bike, chasing the kittens around the house and I pour myself another glass of wine. The pain is too much. The reality that is my own is inescapable. There is no place I can go to hide from it. No corner is deep enough to shield out the truth that is growing inside her. No blanket I pull over my face is dark enough to keep the day away.

Today was the most horrific of days where we listened to the treatment plan – a Phase I Clinical Trial. We listened to all the things the chemotherapys would do: take away her hair, make her sick, cause her pain, make her tired. Then we listened to the thing the chemotherapys would not do: keep the cancer away. But if it shrinks the tumor or makes it go away, she can keep receiving the treatment for two years.

The cycles will last three weeks. Seven days of oral chemo at home on week one, five days of IV chemo at the hospital on week two, dropping counts on week three. As I said she will lose her hair. There will be shots and blood draws, transfusions and just so much…We don’t know if school is a possibility for the fall. It depends on how her blood counts respond through all this.

We went over every page of the study with the team and then Dr. Weiss asked if we had any questions. I finally asked the question I had been wondering the past two and a half weeks, “Will there ever be a time in her life now when she is not in treatment?”

He paused and took a deep breath, ” Well, it’s the year 2015. A lot can still happen in the next few years.” I nodded, “But you’re saying that where we are now, she will be in treatment for as long as she lives.” The room got quiet.

“Yes, until you guys decide it’s just too much.”

All my life I’ve wanted to make the world a better place. I’ve been focused on the whole damn forest and I can’t even make it better for the two trees in my own backyard. And that is a horrible, sickening, terrifying feeling that makes me want to curl up in a ball and scream. But I didn’t. Instead I chose to pick up the pen and sign the papers.

Today I gave consent for my daughter to begin another season through hell. And do you know why? Because the clock is ticking and I’m running out of options. So I agreed to put one foot in front of the other and trust that the Lord is going with us. That He knows where we’re headed. The battle ahead seems grim but it is not over yet. And I cannot give up because that’s not congruent with who I am or who the Lord is. He gave me the heart of compassion, the spirit of an advocate and the soul of a warrior, not to fight for the forest but to protect two little trees trying to flourish in my own backyard.

May the Lord bless this trial, these drugs and our participation. May He annoint Izzy’s body in preparation for what she’s about to experience and may she have the chance to live without treatment once again.

Blessings on you today and LIFE for Izzy!
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He Is Here

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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.

When she was done the art on my arm was beautiful. An EKG line that never ended, turning into the name, Israelle. Her life forever on my wrist, over my veins, over my own heartbeat.
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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.

Both biopsies went perfectly and we were able to get home in time for Izzy to have a nap before her program. We were quite shocked that she felt up to going but she was just her usual, perfect self.
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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. ♡

The Heart of a Mother

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I sat on a playground bench tonight and did the thing you’re never supposed to do these days at playgrounds. I did that thing mothers are scorned for doing when they are supposed to be engaging with their children. Occasionally I would catch glimpses of other mothers looking at me. I was that mom we have all read about on the internet. That mom who went to the playground with her kids but couldn’t look away from her cellphone long enough to actually be there with them.

They played together, never looking for my attention, which is good because my face was glued to the screen looking through old photos, old videos, anything to take my mind away from where we were. There were so many things I was avoiding.

I have been to this playground many times before and tonight I was sitting across from a slide I stood by three years ago when I got one of those phone calls that is in my book of life changing phone calls. It wasn’t a phone call about Izzy though, it was about Carter. He needed spinal cord surgery and they had called to say they thought it should be done as soon as possible. The following week.

And I remember standing on that playground watching the other kids play and watching Carter struggle to climb the ladders and the stairs. I had been trying for so long to get someone to listen to me, to hear me say that something was wrong with his little body. But no one had until now.

That is the heart of the mother. We see something wrong with our children and we  do anything and everything to make it right for them. We advocate, we fight, we sound like broken records and crazy people until someone finally listens and says, “well, would you look at that, he’s had a tethered spinal cord for five years no wonder he’s having these problems.”
Tonight as I sat in avoidance on my little bench I remembered the day I got that call. They performed surgery the following week and three weeks later Izzy was re-diagnosed with neuroblastoma for the second time.

I finally put my phone away and forced myself to watch my kids. But you see it wasn’t really my kids I was avoiding all along. It was the other ones. Their happy little innocent laughs sounded just like my kids. Their cute little games of chase looked just like the ones my kids were playing. From the outside all of the children looked like innocent little kids playing on a playground on Mother’s Day. Any bystander would never have known that one of those children had just been given a non-curable diagnosis just days before. Any bystander but me, who hid behind my sunglasses and shook my leg uncontrollably.

When we got home tonight I stood in the driveway and talked to a neighbor about the medical plan for the week. Izzy rode up on her scooter, full of life, “Did you tell her?,” she asked, not realizing my entire world already knew. “I did, baby,” I said through tears.

“Do you cry everytime you tell someone?,” she asked, more curious than concerned. Her question caused me to pause. “I do, baby, because I’m your mother. Mother’s are supposed to be able to make things better for their kids, to fix things and it makes us sad when we can’t. It makes me sad I can’t fix this for you.” I was proud of my answer but mostly I was proud that I got it out without more crying.

“Can you fix my scooter?” she asked, looking down at this piece she was wiggling. I laughed. “That, is something I can fix.”

She rode away leaving my neighbor and I standing with tears streaming down our cheeks but smiling.

That, is the heart of a mother. We want with everything we have to make things better for our children. We want desperately to take their pain away. To put bandaids on their cuts and scrapes, to rock them back to sleep when they have had a bad dream and to fix their scooters. It is how we were created. And when we can’t it feels like a part of us is dying. Because it is. The part of us, the part of me, that was created to nurture and protect my young suddenly isn’t enough anymore. Something greater than me has entered the picture and is trying to take over. As a mother it feels suffocating.

Tuesday morning we will head to Cincinnati get a biopsy of the tumor. The Radiologist who will be performing the biopsy did an ultrasound of it on Friday.The tiny spot is wedged between her left kidney and spleen. It will take a week or so to get the pathology reports back but they will help us to determine a treatment plan.

Right now I am still mostly in shock. My heart beats like a pendulum between great sadness and a vast sea of nothingness. There are brief moments of the day where I have great faith but those are do quickly fleeting. Most of the time I feel too paralyzed to hope or to believe for much.
To those of you that do have the faith I would ask you to stand in the gap for me during this season. I believe the Lord is faithful to revive my Mother’s heart so I can fight without ceasing once again.

Blessings on you today and LIFE for IZZY!

In The Waiting

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I woke this morning well before the sound of my alarm. Well before the dogs began to pace or the sun began to rise. It was not like one of those days when you wake up and it takes a blink or two before you remember where life has taken you. No, I knew the moment my lids separated that I did not want it to be this day. I closed my eyes tightly and sunk further under the covers trying desperately to fall back into a deep slumber. But my heart was racing too fast, my lungs were taking short, shallow breaths and I was trembling.

There was a time when I couldn’t stand the waiting. I wanted the tests because I wanted to know. But this time, because of the prognosis that was on the line, I didn’t mind waiting. I enjoyed what was happening in the waiting – the living. I simply didn’t know if I could bare to know the results. Could I handle it if they told me the cancer was back and we were only walking a downhill battle? I didn’t know.

I knew I had grown quite comfortable living in the waiting this past week. I had found hope there. Hope that could be torn away in a thirty second phone call later that day.

I began to read through scriptures of promise I have been trying to take up residence in. I tried to focus on words of Truth instead of statistics. Instead of the many heart breaking stories I am watching all around me in the lives of other pediatric cancer patients. I found peace.

But all day long as I waited the peace slowly began to dissipate. I nearly threw up three times in the radiology waiting room. I would run into nurses who have cared for us in the past and they would look at me with condolence in their eyes. I didn’t want their condolences damn it. She wasn’t dead. She was alive, on a scanner and it would not determine her destiny. And I claimed that over and over again through my tears. I declared it though I didn’t feel any emotion attached to it.

It was just after five when I got the call. The call that will go in the book of calls that has changed my life forever. The scan indicated the tumor was MIBG avid. It is indeed neuroblastoma.

I talked with no emotion to the doctors for several minutes. There will be a biopsy next week to see exactly how best to treat it and they have contacted their Phase I Research Team to begin looking at chemotherapys to possibly target it. We won’t know more until the first of the following week. But this is what I do know: with relapsed neuroblastoma the medical goal is no longer curing the patient, it’s keeping the patient stable as long as possible.

I told Kendrick and then together we came in the hotel room and told Izzy, “That was Dr. Weiss and Satheesh, baby. We need to talk.”

She wept. She buried her face in the pillow and did the thing that I wanted so desperately to do. She bawled her eyes out.

“I don’t want to have cancer again,” she said, her lip trembling. “It’s not fair.”

We talked for a long time and finally she said she just wanted to go to sleep. I snuggled up close to her, having flashbacks to all the times I lay close to her during treatment. Silent tears fell down her cheeks and began to fall down mine. I stroked her hair, cherishing every strand.

“I don’t want to start staying at the hospital again,” she said through her slow tears. “I don’t think we’ll be doing much of that babe. Treatment won’t look like that this time,” I assured her.

“Why?'” she asked? I swallowed hard and tried to keep my composure, “it will just be different this time.”

“Will I lose my hair?,” she asked with the desperation of a grade schooler now and not a four year old. “Probably at some point,” knowing I had no idea which chemo we would try first and finding one that kept her stable would be tricky.

“Then I want you to lose your hair with me again,” she said. And of course I said I would.

When it was all said and done and we said good night I told her I loved her forever like I sometimes do and this is what she said back, “I love you mama for my whole life…and my whole history.”

Blessings on you today…and I will declare it until the day either she or I take our final breath, LIFE FOR IZZY.