Day 58 – Celebrate

The first week of July, when we arrived at Children’s for outpatient testing, we saw a patient leave the Oncology/Transplant floor after their transplant. Staff lined the hall and sang as the the child paraded through them. We stood at the opposite end of the hallway in clinic, waiting our turn for appointments to get treatment started. It seemed as though we would never get our ‘parade.’ But today, eight months later, we did.

Over the next couple weeks we will be staying here in Cincinnati in a hotel continuing to treat the TMA and getting things started with radiation. She is still on tube feedings for twenty hours a day and IV nutrition for twelve. She has a list of ten medications that have to be given multiple times a day. The only problem with not being in the hospital is you don’t have people to do it all for you. Today was exhausting. But it was all worth it because throughout the entire day I saw her smile and say, ” I can’t believe this is really happening. It feels like a dream.”

We celebrate today because she has made it past this milestone. Thanks so much for your prayer and support along the way. We still have a long road ahead, but for now we’re just going to thank God for how far we have come.

Day 51 – Hope Again

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Wondering how we got to day 51? Don’t worry, you didn’t miss anything. I am done counting our inpatient days as days since transplant. That number is only relevant until engraftment is a success and you meet the transplant criteria for discharge. That happened weeks ago and that is not what is keeping us here. We are here because of TMA and the effects it is having on her kidneys and the recent development of her lungs now, too. Since the game has changed, now I’m changing my recording of it too. The doctors can call it what they want but we have been here for 51 days not 42. Seven weeks not six. Let’s call it like it is.

Almost every February (minus pregnancies) I begin training for the Indy Mini Marathon. Seven years I’ve trained but not this year. Just another thing, no matter the size, that cancer has stolen. I see runners along side of the road now and I long to be them, if only for a moment. I long to feel the momentum of moving towards a goal that is both fixed and well defined. Instead I am moving thru hell towards an exit I cannot see or touch. But we press on.

As time goes by, I feel more and more isolated from the world I used to be a part of. A born extrovert, I long to be in social settings but our hospital room is gets smaller and lonelier each day. At the hospital I think going home will numb the pain. Once home I think going back to the hospital was better. The truth is the pain follows me everywhere. There’s no where I can go to escape it. Nothing can make it go away for long and the worst part about it leaving is that then I have to remember all over again.

Izzy is so much more like herself these days. She laughs and smiles and sits up in bed playing with things. She has gone to physical, occupational and even music therapy everyday and it’s been great to see her excited to get out of bed. I’m even told that yesterday she walked all the way back from therapy with her walker! Our doctors are very pleased with her response to the TMA treatment and even asked to start talking with Radiation to know exactly how to best protect her kidneys. We don’t have a date set yet but I am encouraged to see the ball rolling. Now they are even talking about the possibility of treating the TMA outpatient within the next week or two. That would be wonderful. Mostly because, while we would still have to stay in Cincinnati, Carter and Izzy would be able to see each other again on the weekends.

I stayed home for an extended weekend this time and I needed it more than I knew. Yesterday was beautiful. Carter and I spent the afternoon outside enjoying one of the first tastes of spring. I took some photos while we were out back and this one spoke to my heart.

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Light has been a continued theme in my prayers for Izzy. I have asked repeatedly for light to fill her body and destroy any darkness. What I had not thought of, however, is light's role in bringing life to the dead of winter. As I looked at this photo of the sunlight penetrating through the barren forest I was reminded of Izzy's tiny body. It is now free of disease but in order to stay that way it needs desperately for God to fill it with life. Life so strong and powerful that it cannot be overcome by this disease. What I also saw when I looked at this photo is that the light can only shine through this beautifully when the trees are completely bare. When spring is in full bloom and the trees are filled with life their lush canopy actually blocks the light from showing through so completely. Interesting, isn't it? To be honest with you it would be way more interesting to me if I was learning it by watching someone else's life but it is what it is.

Yesterday when I looked deeply into this photograph I found hope. And hope is hard to come by on this journey and it does not always last long either. Who knows what I will find waiting for me when I wake up tomorrow. But today I have hope and I will hold onto it for dear life, sure to get every last second's worth.

Day 33 – A Love So Deep

This week has been one of the hardest I have had emotionally in months. It is hard to say for sure what makes some days more unbearable than others. But the reality is that there are hard days and then there are days that are even harder. There are days you pat yourself on the back for getting through and then there are days you can barely muster up the energy to keep going. You think that if you have to live in this one more day you will never make it. But you do. What’s more is you learn from it, so the next time you think you cannot make it you remember it is not true. It is just what the enemy wants us to believe. But God has given us access to everything we need to make it. We are all capable of so much more than we give ourselves credit for, really.

Izzy has only been out of bed a handful of times in the past five weeks. The muscles in her legs are weak and out of commission to say the least. Physical Therapy has given her some support braces to wear in bed but she is refusing. On Friday we started getting her out of bed with a walker. It is hard, but I am hopeful that by the end of the week she will be more into it. The kidney doctors have started weaning Izzy off blood pressure medicine and she is responding wonderfully. This is a good sign that we caught the TMA in time before it could do permanent kidney damage. Different kidney markers they look for in the blood also continue to come down which is encouraging.

Overall she is responding as well as she could be to the treatment for TMA, which is great. But I cannot stop thinking about how we should be starting radiation next Monday and now we are not. Now we are a month or two out. And more than likely we will remain inpatient the entire time. Even over March 11, Izzy’s fifth birthday. It stings just looking at it on the screen.

I took Carter to the Lego store in Chicago this weekend (quite the letdown might I add). He needed to get out of the house and I thought a new, cooler, Lego store might be nice, but he was more impressed by the hotel pool. He swam for hours while I pictured Izzy back in the hospital in her bathing suit. She had been wearing it all week playing ‘beach’ in her room, flip-flops and all. She will not be able to swim again until her central line is removed, which right now is looking like the end of the year. I sat on the edge of the indoor pool hidden behind my sunglasses, tears streaming down my face. He swam around alone watching siblings splash each other with laughter. Occasionally he would look at me and smile but I could see the pain in his eyes. I thought he would enjoy this, but it was harder on both of us than I imagined.

The trip to the mall the next day was even worse. I did not know the Lego store would be right next to part of The American Girl store. “You have got to be freaking kidding me?,” I said as we walked past it and the multitude of little girls that flooded the entrance. I tried, I really did. After we left the Lego store I went in and tried to pick out something for Iz. But they were everywhere. Happy little girls smiling from ear to ear, each and every one of them with hair. Carter looked up at me and said his stomach hurt. I grabbed his hand and led him out of the store. “I know, babe, mine hurts too.”

I am back in Cincinnati now, lying next to a little girl (in a bathing suit) that has been reaching over every now and then to hold my hand while I am typing. She has been falling asleep like that the past few weeks. What seems like forever ago now, I used to run my fingers through her hair at night. I remember the first time it came out in clumps in my hand. That was so much harder for me than her. Soon I started rubbing her back to get her to sleep, but too often she was sick to her stomach and did not want me touching her. Now all she wants is to hold my hand. A simple gesture used by even fifth grade “couples” and yet it communicates a love so deep.

None of us gets a say in all this. This life thing just begins to unfold before our very eyes and just like that we are in it. I opted out once, many years ago. Said I was done with all this ‘life’ stuff, but God would not let me go. He had a plan for my life, a calling. A calling to be the mother of a little girl named Israelle. To protect her, to fight for her, to be her voice loud and strong. And even just to hold her hand as she falls asleep.

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Day 25 – Just Run (take two)

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Let’s try this again. My first stab at this entry went out before I was ready and then I deleted it in a panic. I can’t remember where I started before but it went something like this…

There’s a mom I’ve met on the transplant floor whose been like a breath of fresh air to me. Everyday we pass each other in the hall, drink our coffee and talk about the hell we’re enduring. I’m thankful that our journeys have intersected here. She has a ten year old son who got his transplant back in August. In December they found out he had developed a new type of cancer post-transplant. The journey before them is now unknown. They walk forward one day at a time and wait.

She told me they have this one picture of their son before transplant and when they see it her husband always says he wishes he could go back to that moment, pick up their son in his arms and just run. Perhaps that sounds cruel or unloving, but it makes perfect sense to me. I remember feeling that when Izzy was first diagnosed. I wanted to run away with her as far as I could and hide her from this nightmare. And I feel it again after every round of chemo once she starts feeling better. Because just as she feels strong enough to start running again and to start eating it’s time to knock her down again. That’s what sounds cruel to me. And it never gets any easier. She walked into the hospital with me to transplant like she has for every round of chemo. But I’ll wheel her out in a wheel chair just like I have almost every time.

There are three pictures in the frame at the top. The first was taken the week after Izzy started treatment. The second was taken last week and I’ll get to the third later. What you’ll notice in the first, what I notice, is that she doesn’t look sick yet. For most of our children, the cancer didn’t make them half as sick as the treatment. It’s the treatment that destroys them piece by piece as it tries to knock out the cancer. Their tiny organs are subject to horrendous levels of toxicity. It’s such a sick irony to think that treatment is ‘making them better.’ But that’s not really what it is. Treatment is giving them a chance at life. But without the grace of God miraculously intervening, they will pay severe consequences for that chance. How’s that for ‘medicine’?

I don’t have to look at these two pictures of Izzy to feel the weight of it. I walk with it everyday. Every time I look at her I am reminded of what she’s lost. But I’ve invited you on this journey with us and I wanted you to see for yourself. This is what cancer and it’s treatment does. You can say, it isn’t winning or it hasn’t won or whatever you want. But here she is. The girl on the left has made frequent trips to hell and now she is the girl on the right. Carter told me last night sometimes he doesn’t even remember having a sister. They have both been stolen from and and that is an injustice like no other.

My friend’s son woke up one day this week with his neck swollen out as big as his face. They sent him to ICU because of the pressure on his airway. He’s fine now, just a reaction to chemo they think. They won’t know for sure until they try it again in two weeks. That’s how it works with poison. You wait and see what happens. Every time.

So here’s what I finally realized after all this time. What we need, what Izzy and all of these kids need as much as healing from cancer is healing and protection from treatment. I don’t want Izzy to walk away from cancer only to have to pay the price of overcoming it. That would mean that the enemy wins in the end and you can’t believe I’m gonna settle for that. Absolutely not. He is stepping on grounds he does not belong and I will fight on every front.

So what I’m choosing to focus on now is the third picture. Right now there is a picture of a bloom on a rose bush, but I will replace it someday with a picture of Izzy post-treatment. We found out the cancer had returned on June 25th. My birthday was the next day and a friend gave me this mini rose bush to plant in the yard as a symbol of the many birthdays I would have to share with Izzy. So no, I don’t have the post-treatment picture of Izzy yet, but I think this one represents it well. You can look at whichever picture you prefer, but I have to keep focusing on this picture to keep fighting. Because these first two make me want to pick her up into my arms and just run.