Some days are manageable. Others aren’t. We didn’t go home last week as we had hoped. It’s day thirteen and everyday our departure gets delayed by another setback. A fever, a virus, mucositis, C-Diff, her inability to keep down formula. Today I had multiple people tell me that Izzy just seems to be getting hit harder by these rounds of chemo then most kids. When she is experiencing a side effect she experiences it to the maximum capacity. Whenever I ask why something is happening our team just looks at me and says, “Well, because it’s Izzy.” One theory is that the cancer is responding so well to the treatment it’s just wiping her out. Perhaps this is a sign of how hard the cancer is getting hit. It’s a theory, but it’s one I’ll hope for.
This stay has gone well for us. Izzy triumphed through chemo this round though she now has C DIFF, a bacteria infection in her GI tract. We didn’t get out of here today as we had hoped but we will still have a good two weeks at home before surgery if we leave soon. We’ll have to come back a few times for scans but I’ll take it. Until she got placed in isolation yesterday because of the infection we were spending large portions of our days down in the playroom. Here is a small glimpse of what you’d see down there if you could go.
She reached across the table for the bottles of sand, studying each color closely before choosing. So far in her bottle of sand there were beautiful thick and thin layers of pink, green and blue. Purple. The next layer would be purple because the next layer of Izzy’s bottle was purple. The two girls were copying each other from one project to the next in the playroom. There wasn’t much room around the table with the two girls, their IV poles with chemo running and the other mother and I. But they didn’t mind. They were squeezed in, elbow to elbow, to the mostly boy dominated playroom thankful to have found a companion interested in something other than Legos.
She was around Izzy’s age. She’d just celebrated her fifth birthday in the hospital during her last stay. We had first met her the night before her birthday in this same playroom. She had sat on her mom’s lap with her head fallen on her shoulder, tears streaming down her face. All she wanted was to go home and be with her dog on her birthday. A perfectly reasonable and heart breaking request.
Each time they poured more sand in they watched in awe as it ran through tiny funnels into their butterfly shaped bottles.The girls continued to create jars of sand each paying close attention to what the other did but not speaking. I watched the girls thinking back to the first time I had talked to her mother that first night. We had sat at that same brightly colored table with shiny chrome legs chatting about our stories. It’s interesting here, the fine line between idle chitchat and the most intimate details of your life. We talked of how it all began, her story strikingly similar to our own. It was then I found out the girls shared the same diagnosis. Stage IV Neuroblastoma. She told me they were only a month or so ahead of us in treatment. We knew we would be crossing paths a lot in the year or so to come. But we also knew the inevitable, statistically one of our daughters would not survive. Fortunately I know we can both put our hope in something other than statistics. But it’s still hard not to think about it whenever I see the two of them together.
At another table there’s a boy around ten building with Legos with his brother. He angers easily getting bored with one game and wanting to move on to another. At first glance his emotions seem out of proportion for his age. But he and his father have been there three and a half months straight and he’s in a wheel chair his legs too weak from the cancer that’s in his bones. Can you imagine how irritated you would be?
Over by the toy kitchen there’s a little fifteen month playing with pots and pans on the floor. Within five minutes he starts to wander out into the hall and his mom jumps up, just steps behind him. Between naps he runs from one end of the hall to the next looking for anything new to get his hands on. He grins from ear to ear like any other toddler anytime he catches you looking at him. You can see his eyes light up even behind his tiny protective mask. His family comes for thirty five days at a time and then goes home for ten and comes back to do it all over again. His parents are believers and his mother is one of the only parents I’ve really been able to relate to. They have two other children, three and five that are two hours away.
And then sitting alone in the corner in hospital clothes is the child that has won my heart completely. Three years old he sits playing video games his feet swinging from the oversized chair. With fair skin and remnants of blonde hair he watches the screen intently laughing when the Lego Batman guys fall apart. But there’s no parent nearby to laugh with him. Ever. He is living here during his treatment, alone. He, too, has the same diagnosis as Izzy, but for reasons I can’t imagine he never gets to go home, whatever home looks like. He started treatment right before us and in all this time I’ve only seen a visitor here once for a little over an hour. Who is this child suffering all alone? I know his name but nothing more. His birthday is coming up just around the corner. I asked him yesterday what he wanted and with bright eyes he told me a semi truck. He always lists a couple other things too, but at the top of the list is always simply a semi truck. They do a fabulous job around here with inpatient birthdays and I’ m sure his will be no exception. And believe me, one way or another that child will have a semi truck on his birthday. But I wonder if anyone will come to see him or stay over. If for a moment someone would come and fill the silence in his room.
These are a handful of the children that sleep right down the halls from us each night. And in the midst of your prayers for Izzy, I would ask you to pray for God’s presence on this floor completely. These are five stories of the countless here on any given day. All of them are desperate for the love of God to carry them through this season. Some more so than others. We all walk around tired, scared and shell shocked at times seldom prepared for what the day has given us. My prayer is that this season would be a radical season of hope around here like no one has ever seen. Today I have hope for that. I have hope for the love of God to come here in such a passionate and contagious way that it shatters fear. It shatters hopelessness and it shatters whatever other kinds of nonsense the enemy has intended to bring with pediatric cancer. And thanks for praying for joy for me by the way. I think I got it and a whole lot of other good stuff too.
As you may have noticed the gaps between my entries are getting wider. It’s not that there isn’t anything to say, it’s just that sometimes I feel like my heart is a broken record. In the beginning there were so many emotions I was feeling, they were all so new and fresh. But now that the dust has settled it’s like it trapped down a part of me. It’s harder now to reach out from beneath it and articulate.
So, we did get finally get discharged last Thursday after eighteen days. We’ve been home for a week and are headed back again today for the fourth round of chemo. During the final stretch of the eighteen days Izzy had a CT-scan to look at her tummy since she was having such trouble keeping things down. The scan didn’t reveal a ton of information about why she was still throwing up but it did show that her primary tumor had shrunk considerably. The doctor was thrilled with the news, as were others in the room when he delivered the news. I felt little emotion at all. There was a part of my mind telling me I should be happy. Telling me that this was great news, that it meant things were working. But it did nothing for my heart. It didn’t take away what’s ahead for us. I didn’t mean we don’t have to live in a hospital, that she doesn’t have to endure hell and that Carter and I don’t have to be separated. It’s just hope that it will all be worth it in the end.
Izzy had an amazing week at home. She had an unbelievable amount of energy and played just as much this past seven days as any other four year old I’m sure. It’s almost like her body was making up for lost time. And she had a lot of requests too. She wanted to plant flowers. Check. Go to the Children’s Museum. Check. Go to the Zoo. Check. Go to the make-up store. Check. Bake cookies. Check. On top of all that she was outside constantly running, playing, swinging, riding her bike. If it weren’t for her little bald head you would never have known she was different from any of the other kids on our street
Our time at home was picture perfect at it’s best and a gut wrenching Lifetime movie at it’s worst. The most difficult time was oddly the first hour we were back. We had made it back just minutes before Carter needed to be picked put from school. I had talked to him briefly the night before and told him I would get to pick him up and I could hear the excitement in his voice for the first time in weeks. Carter isn’t really into the phone. He never wants to talk to me, or anyone else for that matter
We do get to FaceTime every night thanks to the generous donations of IPads from a loving community, but otherwise I would have no contact with him. I was so excited as I drove alone to his school to pick him up. There had been a delay at the hospital that morning because Izzy needed platelets and they were out of her type. For hours I had sat in her room imagining this moment. I had wondered if he was sitting in school imagining it too.
I pulled into the parking lot with eagerness and drove around the corner to the pickup line. As each car moved forward picking up his or her child I could hardly stand it any longer. Finally I saw him. He walked out of the building, backpack hoisted over one shoulder by a little tail strap like he does, beaming from ear to ear as he saw the Jeep. He walked proudly towards it waving at every kid he saw along the way. But as soon as he reached out to open the door something instantly changed. He opened the door all by himself, climbed up into the Jeep and got himself all buckled in. In the past I always had to help him get buckled in and he always wanted me to but I guess these were the types of things you learned to do on your own when you didn’t have a mom around. I looked at him and told him how glad I was to see him and he smiled warmly but he said nothing, just opened his lunch box and got out his crackers. Then I pulled out a fresh bottle of water I had brought and handed it back to him but he told me he had his own in his thermos from lunch. I thought he would have milk in his lunch box, but he told me he doesn’t do it that way anymore. Daddy packs water.
I could feel the tears beginning to well up underneath my sunglasses. I continued to talk on the way home but he said almost nothing. I knew what this was. I had seen it with my kids before when they were around family they hadn’t seen in a while. He was warming up. It was taking him time to warm up to me. I had been away for too long. I wanted desperately to tell him I would never leave again. To tell him that it was all over and things would go back to the way they were before, but of course I knew it wasn’t true. I had no idea how long I would be gone the next time. Or the next one.
As soon as we pulled in the driveway he jumped out of the car and ran inside leaving me behind. It was about an hour until he warmed up. About an hour until we hugged and snuggled and all felt right in the world
I suppose that’s just a stage of parenting that happens naturally, but it’s one I wasn’t even close to being prepared for. You want to know that your kids can survive without you. That they can exist independent of you and still thrive. It’s kind of the whole point. You raise them the whole time with that purpose in mind. Praise God I was the only one crying behind my sunglasses this morning when he jumped out of the car and ran into the school. When I told him I didn’t know when I’d be back. But it still stings to see the one who used to need you so much grow up, a little faster than he should have too.
And the reality is it probably hurts a little more because of the uncertainty I’m walking in everyday with my other child. It just seems so unfair to feel like I’m losing one of them while I’m fighting for the other. I know that’s not the truth, but that’s how it feels.
Well, here we are. On our way back to Cincinnati yet again. I’m praying for a shorter stay this time, less than a week would be nice. Afterwards we’ll do another scan and the first week in October we’re scheduled to have the tumor removed. And I’m hopeful I will feel joy in that. That’s my prayer this week anyways. That I can feel joy again when I should. If the cancer is reacting to the treatment I want to be able to celebrate that. I want to break through the dust and celebrate the victories. The ones happening day by day and the many more ahead.