Overdue Update

There are days on this journey when I lack strength. Days I lack hope and days I even lack the energy to get out of bed. But there are never days on this journey when I lack emotion. A lot of times our days are filled with the rawest, most paralyzing collaborations of fear and sadness, helplessness and despair. But for the past two weeks we have been blessed by an emotion we aren’t entirely accustomed to. We have been saturated in the folds of joy.

Living like normal people in a house and taking trips for fun not medical necessity, we have enjoyed every second. There has been far more laughter than tears and for once in a very long time cancer has not carried such a weight on us. It has been just another word in the English language, seldom triggering much response when used.

Disney World
By now I’m sure most of you know we surprised the kids with a trip to Disney World nearly two weeks ago. We found out we had a whole week without any appointments and were, surprisingly, given permission to leave. Thirty-six hours after we booked a reservation we hopped on a plane headed to the ‘happiest place on Earth.’ And for those five days, for this family, it was.

Everywhere we went our family was blessed with favor and Izzy was treated like royalty. Most of the time it is the little girls who wait in line to see the princesses. But for us, on nearly every occasion, a cast member would grab the attention of the featured princess at the front of the line, take her aside from her anxious fans and pull her over to meet Izzy. The princesses were literally leaving their lines to come see Izzy. It was beautiful. We were connected to a friend of a friend who is a Disney employee and she was able to make exclusive dining reservations for us at a couple places last minute that we would have never been able to make. From the moment we surprised the kids (with a local news station filming it all) it was nothing less than magical.

Aside from all the special treatment and splashes of Disney magic, we had five days and four days where the focus of our life was not Neuroblastoma. Five days with no appointments or home healthcare labs. Five days where, despite the IV pole in our hotel room, we were not attached to a diagnosis. We were free to run up and down the streets of the Magic Kingdom laughing and playing in the sunshine… All. Day. Long. Though Izzy threw up every time she tried to eat and I had to give her boluses of Gatorade in her G-tube to keep her hydrated, she could not stop smiling. She had been in strict isolation since December 31st and this was quite the introduction back to into the world. She was the most resiliant of us all even in the heat, staying out with me hours after Daddy would take Carter back to the hotel. It was as if we had set a prisoner of war free and she was not turning back no matter what. She could have been exhausted, dehydrated, even had a broken leg or two, but she was determined to keep going. “I’m the boss of my body,” she would say trying another French Fry after she had thrown the first two up. She would not let the nausea control her. I smiled proudly and nodded agreeing with the words I had told her over and over again.

The only difficult thing about the trip was the racing thoughts in my mind that would come from time to time. The day before we left I learned that our youngest little friend from the Cincy Oncology floor had passed away. ‘Baby M,’ I had read on a friend’s care page. My heart had sank deep into my chest. She had turned two around Thanksgiving time. I remember her birthday well, we sang to her through the window of her hospital room door. She spent months alone in the hospital. The nurses loved her dearly and would carry her around when possible or play in her room. “Hi Gorgeous,” she would say to anyone that knocked on her glass door. She was gorgeous and I’m sure someone had called her that a time or two before. In December her grandmother had seen enough. She quit her job, packed a suitcase and came to stay in the hospital with her. She was a saint. Baby M had her transplant at the beginning of February. For weeks grandmother was one of the ones I ate with in the family lounge sharing stories of our days. Talking. Listening. I have no idea what happened to Baby M but I know she doesn’t have Leukemia anymore. I know she is with Jesus now and she knows nothing of the pain she felt here. Nothing of the sadness. With the sudden news of Baby M’s death I found myself reminded again just how real cancer is. It was more than just a word and the heaviness of it would come over me every now and then. Out of nowhere the enemy would pummel me with waves of fear, “What if this is our last trip here together? The last time I see her face light up here?” Everyday it was a fight to look past the fear and focus on what we had for the moment. By God’s grace I managed to stay on top of the fear. It would not control me. I was the boss of my body and I would not let fear steal our five days of joy.

Poppy’s Lake House
This last weekend we even got to go to Poppy’s lake house. Kendrick’s parents live on a lake and we have not been out there since before her diagnosis in June. Though she knew she wouldn’t be able to swim, Izzy has often talked of going back out there. We used to go out there quite often and it is one often kids favorite places, there simply hasn’t been time this past year. I will admit that there is an unexpected pain that comes in doing things that you used to do ‘before’. While she loved running around playing with things she hadn’t seen in nearly a year, every now and then you would catch her staring down at the lake watching the ripples in the water or a boat buzz across the shore. “Are you sad?” I asked her once. “No,” she replied looking down at her toes. Then she continued. “Nothing is fun if you can’t swim.” It was too cold to swim anyway and it was sprinkling on and off all weekend but I knew that wasn’t the point. “But honey, no one can swim.” We talked more but as I watched her eyes find the lake again I imagined her remembering what it felt like to be able to move freely through the water. I thought of how paralyzing it must feel to not be able to feel water over your entire body. To have another person, a medical institution, place something in your body while you were asleep and then tell you once you were awake you couldn’t be under water for the next year and a half. That must be unimaginable for a child. One who loves to swim, whose favorite part of the day used to be bath time. But now she cannot do either and as I watched her stare mindfully at the lake I knew this alone had a greater effect on her than I would ever know.

What’s Next
I know everyone’s dying to hear what’s next on the horizon for us. Well, I haven’t known exactly which is part of why I’ve waited so long to write. Yesterday I was finally able to sign consent for Antibody Treatment which will begin late next week. It has taken awhile to get through all the red tape of this research study and we had to get a PET scan of the cyst the other scans found which came back fine. After that an exception study had to be written for us since we are outside some of the perimeters of the main study, regardless, we got approval. We are so thankful to our team for their continued dedication and faithfulness.

For this third and final phase of treatment Izzy will be receiving Antibody 14.18 in conjunction with the standard Immunotherapy. ‘Monoclonal antibodies are proteins made in the lab, designed to attach to specific cancer cells. CH14.18 was designed to attach to neuroblastoma cells. When it attaches, the body’s immune system is stimulated to attack and kill the neuroblastoma cells without killing nearby healthy cells.’ We will be giving her other drugs to help make this process as effective as possible. Drugs to boost white blood cell production and maintain the response she’s already had to previous treatment. This phase consists of six, twenty-eight day courses of treatment. Each course looks a little different and will consist of varying amounts of time inpatient depending on how she responds. This phase should, however, be filled with our shortest stays in the hospital thus far and if all goes well should finish up mid-November.

While we are hoping to have more time at home during the next six months, this therapy is intense and has harsh side effects. It causes a lot of pain, fevers and most unfortunately for us, blood pressure problems. For this reason we are starting out at only a quarter of the recommended doses for one of the drugs and will increase as tolerated. I will update with specific prayer requests as the days approach. I cannot emphasize enough the need for prayer that the cancer cells are banished from her body forever. Though a lot of children do well this far into treatment, they are at ‘high risk’ for the disease returning. Join me declaring this unacceptable in Jesus’ name.

She will not be admitted until Sunday evening, May 19. Until then we have freedom – and I don’t plan to write again until then – it’s hard to write when you are enjoying every moment of life, you know. I am so thankful for these days at home enjoying life. I am thankful for days I can pick up Carter from school and watch the kids run around the yard. All things I never knew mattered quite so much. I am choosing not to think about the future or the odds. I’m choosing not to indulge in the great ‘why’s that cross my mind daily. For now, I’m choosing to focus on the gifts I have been given today, especially one tiny little princess whose home, NED and feels so good she can seldom stand still long enough for me to take a picture of her in focus.