A week ago yesterday, Izzy, my grandmother and I arrived at the hospital to begin Izzy’s third round of antibody treatment. This time instead of walking down a long, stale corridor of white to our assigned home for the week we were welcomed into the warm colors and modernity of the new oncology unit. The rooms, which used to be white from ceiling to floor, are now filled with color and texture making each moment we are here slightly more tolerable.
This week was successful, with pain management being our only hiccup. By the grace of God and perhaps a tiny bit of luck we will be home in our own beds this time tomorrow. As of now we are scheduled to be home for two weeks before our next two week stay. That sentence looks better in my blog than it looks on my calendar. In reality what they mean when they say ‘you get two weeks home’ is that we won’t be inpatient for two weeks. Several of those days, however, will be spent here in Cincinnati outpatient.
Wednesday, August 14th, will be Izzy’s first day of kindergarten. For now, the time each week she is allowed to be in the actual school building is minimal in an effort to limit her exposure to snotty noses. We will start out sending her just 2 hours each day and if that goes well, work our way up to two full days each week. The rest of school we will do on our own. Cincinnati has a program called ‘Monkey in My Chair’ for children with diagnoses that require them to miss a lot of school. We have been given a monkey that will sit in her chair at school when she is not there. The class will be encouraged to take the monkey everywhere they go so Izzy doesn’t get forgotten by her classmates. The teacher (who we know is phenomenal from past experience) is then asked to take pictures of the class with the monkey and send them our way so Izzy doesn’t forget she’s a part either.
On her first day we will introduce the monkey and then Izzy won’t be back in class for nearly three weeks. That very next day we will head to Cincinnati for two days of scans and then Sunday we will leave to begin Round Four. The protocol calls for scans after Round three and then again after Round Six. Even though I continue to believe that she is disease free I still don’t like to think about scans. If you’ve ever had a scan or two come back bad, it’s hard to erase that terror from your mind.
But after August, well after August things get fun. After that we only have one more inpatient stay – Round Five. Because Round Six is just a medication that can be given at home we have no need for a central line after Round Five. Are you putting the pieces together yet? We’re wrapping this thing up and I don’t think any of us can fully grasp that.
It seems like only yesterday we were walking up and down the white hallways of the unit pushing Izzy in a tiny pink ‘school bus’ while her chemo ran. Now we have six rounds of chemo, surgery, stem cell transplant, radiation and half of antibody behind us and the walls aren’t white anymore either. They are suddenly fresh with color. Fresh with hope.
It has been a year since those first days. A lot of grains of sand have fallen on the sand castle of Izzy’s life. What once was threaten to be washed away by the tide now stands taller and firmer than ever before. Life happens so fast.
In just the month since our last admission two families that we know have had a loved one diagnosed with cancer. They are now members of this long, exhausting journey. I see the tide etching towards the foundation of their castles and I pray it subsides.
In just the month since our last admission two other families we know from Cincinnati had celebrations. These two families were both able to take their well deserved Make-A-Wish trip. I can see the flags waving proudly on new towers that have been added to each of those castles. Castles that have come a long way.
And yet, in just the month since our last admission two different families we have had the privilege of meeting on this journey have had a tiny castle completely washed away to sea. Castles washed away far too soon. Castles made of sand on this earth now turned to gold in heaven.
I use the image of the sand castle because Izzy loves the beach. For weeks she sat in her hospital bed playing beach, swimsuit and all. This make believe game spanned over many admissions and her picture circulated amongst the doctors with a joke about chemo that none of the rest of us would get. But the truth is, Izzy has never even been to the real beach. Not one on an ocean. At least not yet, anyway.
This fall Make-A-Wish will be granting Izzy her own wish, which is to swim with dolphins. For the first time in a year and a half Izzy will be able to swim – and she’s going to do it in the ocean. Make-A-Wish will be sending our family to Florida to the real live beach AND to swim with dolphins (though we likely won’t swim with dolphins at the beach because Izzy can’t actually swim. That will be done at an aquarium).
I am amazed at the mercy The Lord has shown us over the past year and, yet, I confess I continue to find myself in need of more. It is a daily challenge to not walk in fear of the future, to not look too far ahead and wonder. And worry. I continue to declare life over my daughter and invite God to reign in her with all His glory. I pray His light would continue to cast out any shred of darkness that attempts to attack her body. That he would block any tide that eases near her foundation, trying to wash away bits of sand and I would ask you to join me.
**IMPORTANT** As I was finishing up this post Izzy was back having an endoscopy which revealed an ulcer and a narrowing of her esophagus which had to be dialated. This explains the difficulty she continues to have getting food to go down. The narrowing was caused by other ulcers that have since healed.
There is speculation that the Acutane (Cis-Retnoic Acid) is what is causing this problem. This creates a whole new problem. Let me explain. Acutane kills Neuroblastoma cells. It is standard protocol to take it for the last six months of treatment. The study we are on just adds the antibody on top of the Accutane. As of now I do not know if we will be able to continue taking the Accutane.
PLEASE PRAY. I am choosing to believe, regardless of what I feel right now, that God still has a plan for Izzy’s life with or without completing the Accutane therapy. Please join me.