On January 9th Izzy celebrated her one year ‘stem cell birthday.’ Saturday night we made the celebration official by having cake with friends whose son had turned twelve the same day. It was such a beautiful thing to watch her blow out the candles and actually eat the cake. Mostly because up until here recently she wouldn’t have been able to keep it down.
Words cannot express how surreal it is to find myself here, one year out from transplant. The first three months of last year were by far the darkest days of my life. Fifty six days Izzy and I lived in that dreary institution alone, completely isolated from anyone whose lives did not revolve around cancer. We were released only to the comforts of an equally isolating hotel room where we would spend another five weeks just waiting to see if her kidneys would fail. I find myself so grateful that Izzy remembers very little of that season since it brought images and emotions to me that I may never fully be able to escape.
For some reason I am always surpised at the shift in perspective we have when we look back on something as opposed to what we see when we are actually walking through it. Saturated in the horror of her daily suffering I remember crying out to the Lord for mercy. Though I knew He was there with me somewhere in the darkness I mostly remember a feeling of abandonment. But as I look back on that experience now I am humbled as I see the provision of the Lord that was unfolding right before my eyes. You see, there are parts of the story that I have not shared or not shared in much detail. It is those parts of the story which have captivated my thoughts this past week as I celebrate the new life in my daughter.
We went to Cincinnati for one thing: a research study. Childhood cancer is still such a new growing epidemic that, for the most part, you won’t find different treatment options from one institution to another. All institutions are regulated by the Children’s Oncology Group (CHOG) and offer the same protocols based on the CHOG standards. Research studies are an exception. Larger, more popolar institutions are often offering up and coming research studies that one can enroll in. We went to Cincinnatti because of a research study their Neuroblastoma specialist was doing. The end. Four months into treatment the study got called off for reasons I won’t go completely into. I will only say that Izzy was scheduled to be the next participant in the study and I am eternally grateful for her place on the schedule. These things are called ‘studies’ for a reason, because no one knows if they will cause more good than damage. In this case the study was causing more damage.
Upon the cancellation of the study our oncologist came to tell me that we could switch Izzy’s treatment to Indianapolis now if we thought it would be easier for our family. He reminded me that she would be receiving the same exact treatment but I would be home, closer to family and friends and most importantly Carter. Kendrick and I talked but did not feel peace about the decision. Izzy and I would remain in Cincinnati.
A month later he came to me with his concerns again, suggesting I at least consider going home for the transplant portion. “Transplant is a very difficult portion of treatment, Molly. It hits kids so hard and can be very rough on the family to watch. And, well, you are here all alone and I just think if might be better for you if you were back home.” His words were kind and he would say later that he knew he sounded like a father.
“Is this because I was crying during rounds today? Because I can stop doing that if it’s bothering people,” I said laughing, giving no consideration to his words.
“No, I did not know you were crying during rounds today,” he laughed too. “I just want to be sure you understand that you can get the same treatment back home that you could here.”
“No. I’m not going back to Indiana. ”
“Aren’t you even going to think about it?,” he tapped his fingers on the table. I think perhaps he was used to people taking his suggestions.
“No. You’re an expert and they don’t have an expert back there. Even if you aren’t on the transplant unit we will still have access to you and I’m not giving that up so my friends can run lattes up to the hospital everyday. Would you?”
He smiled. “No. I would probably do the exact same thing.”
End of discussion. We really believed that we were there for him. He is a brilliant doctor and helped Izzy through some difficult things but looking back I’m able to see the Lord had us there for another reason. And for a season, another doctor on the transplant unit.
You may remember after transplant Izzy developed a complication called TMA. Her immune system reacted to the amount of chemo she had received and began attacking itself, forming tiny blood clots everywhere. Her kidneys were the hardest hit. Her lab values and blood pressure were through the roof requiring seven medications to keep them under control. Fortunately for us, our transplant doctor, Dr. Jodelle, just happened to be researching this condition, specifically in Neuroblastoma patients. She had found a drug that was used to treat another condition also worked in treating TMA. She was working directly with the drug company and other instituions were calling her to consult on their patients.
Most institutions don’t even recognize this condition until it is too late to fully recover from it but because we were in Cincinatti under the care of this Dr. Jodelle, she caught it immediatly. I actually had a parent from LA who found us through the internet call me this summer. Her daughter developed TMA and the doctors said there was nothing they could do. They just had to wait and see what happened. We did not have that option with Izzy. She was at high risk for kidney failure and ultimately not being able to complete the treatment she needed to save her life. Dr. Jodelle wasted no time messing with other treatments in conjunction with the Solaris. She went with her gut in diagnosing the TMA and put Izzy on Solaris immediately.
Izzy was the FIRST, you read that right, FIRST patient treated exclusively with the drug Solaris for TMA. She responded rapidly to the drug allowing her kidneys to heal with no damage. As we all know, this allowed her to finish the next nine months of treatment. Dr. Jodelle herself was remarkably surprised. She has never seen anything like it. EVER.
Dr. Weiss stopped by our room a few days after the TMA developed. I can still see him standing in the hall in his white lab coat, hands in his pockets.
“You know that if this had happened in Indianapolis…” The look on his face told me what he was thinking. “I mean, we’ll never really know.”
“I know,” I said. “I know.”
“Glad you didn’t listen to me,” he laughed.
We finished talking and I slipped back into the empty room and into bed with my sleeping angel. I would cry myself to sleep in her bed waiting for her to wake up vomiting blood in the night. But before I fell asleep I would listen to a song on repeat a few times. A song by Tenth Avenue North that became the cry of my heart all those weeks. WORN. This is the chorus:
Let me see redemption win
Let me know the struggle ends
That you can mend a heart that’s frail and torn
I want to know a song can rise
From the ashes of a broken life
And all that’s dead inside can be reborn
Cause I’m worn
Can you imagine? How many times I must have sung this chorus to the Lord, tears streaming down my face, laying next to my daughter’s fragile body that could not even move from the bed. And all along He had a plan. All along we were right where He wanted us to be. He knew that her kidneys would heal and that she would make it through treatment. All along He knew that she would start kindergarten in the fall, that she would swim with dolphins and that she would actually be able to eat the cake on her one year cell – abration. As I celebrate her life, specifically the new life that was given to her a year ago, I cannot do so withouth thanking God for his beautiful provision.
Here’s the song if you care to let to listen to it and see what the Lord has in it for you…