The Journey Continues

After a week at home we leave tomorrow to begin Bone Marrow Transplant. Of the three phases of treatment for Stage IV Neuroblastoma this is the one that seems the most daunting. INDUCTION is the first phase and for us consisted of six rounds of chemo and surgery. CONSOLIDATION is the middle phase consisting of the Bone Marrow Transplant and Radiation. MAINTENANCE is the last phase consisting of a type of anti-body treatment called Immunotherapy. God willing our treatment will be over in the Fall.

We made it through induction with No Evidence of Disease which was the most wonderful news we could have received. But the war is far from over. This disease is vicious and treatment doesn’t end after chemotherapy for a reason. We must keep fighting because even though there is no evidence of disease, research tells them there are still invisible cancer cells just waiting to spring up.

Bone Marrow Transplant (BMT) is a little overwhelming to say the least. So here’s a brief look at what we’re looking at over the next six weeks. First of all, when people say Stem Cell Transplant or Bone Marrow Transplant they are talking about the same thing. The Stem Cells in our Bone Marrow produce all the other cells in the body. People can either have a liquid cancer (of the blood) or a solid tumor cancer (there may be cancer cells mixed in the blood but the blood itself is fine). Neuroblastoma is a solid cancer. Izzy’s started with a mass in her left adrenal gland that spread to other smaller masses throughout the bones. In someone with a liquid cancer, like Leukemia, they need all new marrow from someone else because theirs isn’t functioning properly. Izzy’s is fine so they were able to harvest her stem cells back in August and freeze them. Technically, since her bone marrow is okay, she doesn’t really need a ‘transplant’ with all new marrow from another source. What she is technically getting is called a ‘rescue’. They are ‘rescuing’ her stem cells from the cancer cells that had invaded it.

This process will work like a countdown for a rocket launch. Tomorrow we will be admitted on day -8 for the placement of a new central line. (Her old line had to be removed because of an infection). The line is basically a catheter in the middle of her chest that will take IV meds, blood products and her stem cells directly to her blood stream. Day -7 through -4 she will receive a high dose chemotherapy that will wipe out all the cells in her blood stream. Unlike regular chemotherapy, she won’t even have the tiniest amount left to begin reproducing new cells. Day -3 through -1 are rest days. They want to give the chemo time to get out of her system before they place the new cells. Then on day zero her stem cells will be placed. Right now it’s looking like that day should be January 8th. After that we wait for the stem cells to engraft and her blood counts to return to normal. They expect that to take two to three weeks. If we are discharged at that time we will be moved to an isolation room at the Ronald McDonald House until day 40. Day 41 we start radiation.

During this hospital stay things will be different than they have been in the past. To help with infection control the rules are very strict. We aren’t allowed any visitors. I can have another caregiver helping me during the day but they aren’t able to spend the night. I won’t be able to eat in the room, shower or use the restroom. Izzy will be in isolation the entire time, though it is unlikely she will feel like getting out of bed at all anyway. We’re told it’s a lot like the flu with it’s aches and pains, sleepiness, nausea and the addition of mouth sores. The most important thing you can pray during this iis that it works. Continue to pray that all this isn’t for nothing. That the cancer would continue to be destroyed.

On day zero, when Izzy gets her new stem cells, the Child Life department at the hospital will have a birthday party for her. January 8th will be her new, second, birthday. It will be her second chance at life. I never thought we would need that but now that we do I love it. And my prayer is that next year on January 8th and every year after I get to watch her eat birthday cake just because.

The Star Slinky Photo

This past Spring when I got a new cell phone I was careful to make sure they could transfer all my old pictures over. Of particular interest to me was a photograph I have come to treasure. I didn’t care how great of a deal they could make me on a phone, if my pictures couldn’t come out of the store with me I didn’t want it. Mostly because of one photo I had failed to save on my computer. The Star Slinky Photo.

It’s not the kind of picture that you’d normally frame. There are no coordinating outfits, no bashful smiles, no captured laughter. In fact, there are no people at all. It’s not a picture that will take your breath away because it’s composed of two things you could find most anywhere. But even though you could find both items easily, it’s not a picture you could ever re-create because it’s not what is seen that makes it so special. It’s what is unseen. This is a picture of innocence, it’s a picture of stability, it’s a picture of peace.

I took this picture last year on December 22nd, the night before we were told Izzy had cancer. When I was standing on the opposite side of the lens I had no idea that it would be one of the last recorded moments of peace I would have for a long time. We had just put both kids to bed and were getting ready to watch TV when I went to the fridge. I opened the door and, to my surprise, found someone had left a star shaped slinky on the top shelf right next to the milk. Laughing, I took a picture on my phone and posted it on Facebook. Why wouldn’t there be a star slinky in the refrigerator?

This is a picture of innocence. When this picture was taken I didn’t yet know of the darkness that had invaded my daughter’s body. Her tiny frame was yet to be cut into, or poked and prodded daily. That night, cancer still didn’t have a name in our house. There were never parts of the disease that had been vaguely explained or parts of it that had been avoided completely when talking to young ears. When I took this picture it had never occurred to me that I might outlive one of my children.

This is a picture of stability. This picture was taken on a typical Thursday night in our home. I would have come home late and Kendrick would have been cooking dinner. I’m sure the kids were busy chasing each other around the house when I walked through the door. Too busy to pay much attention to me or to remember leaving a star slinky in the fridge. When this picture was taken we were a normal family with a normal life just like you. Our kids saw each other everyday. And they knew they would see their parents everyday too. When I took this picture my words were worth something. If I said I would see them tomorrow, I was good for it.

This is a picture of peace. Another thing you can’t see in this picture is that my kids were tucked away quietly in their beds down the hall. Kids whose biggest fears were things I could promise to protect them from. Things like spiders who could be squished with a shoe and darkness that could be illuminated by a nightlight. When I walked away from the fridge and sat down on the couch to unwind, I sat in peace. No matter what kind of day it had been, I now know sitting there in that moment was peace compared to any of this. I want to remember what it felt like to be the woman taking that photo, sitting in that peace. I wish I could tell her to stay awake a little while longer and bask in it. She had no idea what was about to happen to her world when she woke up the next morning.

I am not, nor will I ever be, the same woman I was the night the Star Slinky Photo was taken. None of us will be. For better or worse, cancer is still changing us. And, yes, I believe that when we make it out on the other side of this we will be restored, but that restoration is necessary because this journey is so damaging and so depleting. For the past year I have looked at this picture with desperation wanting to go back to this one moment in time. Now I’m ready for a new picture.

I don’t need, nor do I want, a picture of this journey. Lord knows I will remember every stone along every inch of the way. But when it’s over, perhaps the day after our last treatment, I plan to take a new picture. I’m ready to start thinking about what I might see in that one. I’m learning that journeys like this take your heart and stretch it out, leaving a deeper capacity for feeling. Along the way my heart is gaining a greater capacity to feel sorrow, but it’s gaining a a greater capacity to feel joy as well. I’m choosing to believe that whatever beauty is captured in the second picture, there will be exponentially more of it than the beauty that was in the first. I can’t wait.

This Broken World

I sat in ICU Saturday morning sobbing silently next to the bed as Izzy slept. The ICU doctor had just come in with news that she was critical. Not able to make sense of what had happened in only a matter of hours I could do nothing but cry. My mind wandered back to the days leading up to that moment.

On Wednesday we had received the wonderful news that Izzy’s final scan was clear. She had No Evidence of Disease. We still had a long road of treatment ahead of us, but we had made it through the first phase as successful as possible.

Friday evening around 6:30 we told the kids the biggest surprise ever. A company had adopted our family for Christmas and was sending us to Disney World on Sunday! Carter was most excited about missing school but Izzy was ecstatic! She began planning out the days and talking about which princess dress she’d wear each day.

But around 10:00 that same night as I lay in bed next to Izzy I begin to feel her body shake next to my own. I was cold, so I covered her up with another blanket and snuggled closer to her. Five minutes later, still shaking, she sat straight up and started throwing up. I still wasn’t concerned because she throws up a few times a day. But as she sat there she continue to shake, harder and harder.

I took her temperature and quickly found that it was elevated enough to require a trip to the ER for labs. We knew that her count was 1900 just the day before so I had high hopes that it was just a virus and they would send us home. But once we got there we found out her counts had dropped to 300. Anything below 500 with a fever automatically requires a 48hour admission on IV antibiotics. Normally it wouldn’t have been a big deal, it was just protocol, but this meant we couldn’t go to Disney. How would I tell her?

I had just taken her to the ER right by our house and she needed to be hospitalized at a pediatric hospital. They started her antibiotics and called for an ambulance. By 4am we were admitted to Riley North. They we’re out of regular pediatric beds so they put her in a bed in the Pediatric Intensive Care Unit. They assured me she didn’t need to be in ICU and would be moved in the morning. But when they took her blood pressure I knew something was wrong. 46/17 the machine read. They took it several times to be sure it was right, but soon found that it was. The doctors and nurses were talking and I couldn’t understand what was happening. They quickly started her on some blood pressure medicine and we tried to get a few hours of sleep.

By 7am Saturday morning, they understood what was happening but no one had told me. I was abruptly woken by a doctor who came in to tell me she couldn’t have anything to eat or drink in case they needed to place her on a ventilator later in the day. I looked at him with confusion. “I don’t understand. Why would she need to be ventilated?”

I could tell he thought I was an idiot as he explained. “You do realize that your daughter is critically ill? She’s septic, that’s why she’s in the ICU. Her blood vessels are leaking and the next thing I expect to see is her lungs filling with fluid. I want to be ready.”

What? I had no idea what was happening. I thought we were in ICU because they were out of beds in PEDs and this guy was the first to mention anything about sepsis. Clearly there had been a shift change in doctors and somehow, someone forgot to tell me some crucial information.

As soon as he left the room I called our hospital in Cincinnati. I knew the doctor on call that day and as soon as I relayed the information to her I could hear a change I the tone of her voice. I knew something was wrong. She started making phone calls and would call me back later. But for now I just sat next to Izzy’s bed and wept.

We had made it this far, all the cancer was gone and now I risked losing her to an infection two days before our Christmas celebration. We should have never told the kids about the trip. We should have waited until we got to the airport just in case something went wrong. But I was tired of waiting for something to go wrong. I’ve spent six months doing that and I just wanted her to have a couple days of anticipation. But now when she woke up she would be heart broken.

And sure enough, she was. The first thing she said through tears was, “I have to go home. We are leaving for Disney World tomorrow.” And she just continued to cry. Harder now because she knew we wouldn’t be able to go. We never even had to tell her.

I later found out that what can sometimes happen if they have an infection their blood is that starting the antibiotics can break up the bacteria throughout the body and through them into septic shock. So it wasn’t just a coincidence that she was okay at the first hospital and not here, the antibiotic she began receiving at the first hospital had pushed the bacteria out into her body by the time we got to the other hospital. Now her body was reacting. Understand? Neither did I the first time, but I had to keep going.

The rest of the weekend was long. We made another ambulance trip that night, but this time to Cincinnati. She was in ICU until this afternoon when we were moved over to the oncology floor. While her vitals remain stable, she continues to spike high favors accompanied by violent chills and aches. This leads them to believe that there is still a source of bacteria inside her somewhere. They decided to have her central line removed as soon as possible, which will be around midnight tonight. There is a lot that needs to happen between now and next Thursday, the day we are admitted to Stem Cell. They hope to get us home for Christmas but I never get too excited until I see discharge papers.

Someone asked me a few weeks ago how I do it. How do I keep going? Well, the truth is I’m not exactly sure. To be honest I don’t think any of us ever think we have what it takes to get through something like this. Or God forbid something like the school massacre in Newtown. But some of us are forced to find what it takes. I’d love to tell you it was my faith because that sounds like an answer to be proud of. But the truth is my faith waivers on a daily basis. It’s not what we believe about Him or how we try to live our lives. It’s not the way we go after God that gets us through. It’s the way He relentlessly goes after us. Day after day He continues to pursue us offering us gifts of peace and gifts of rest. And somedays He just sits and cries with us by the bedside of our child because this broken world grieves His heart too.