Lucy's story was part of a congressional hearing last week. Upon hearing this, Erik and I were both transported back to a horrific time in our lives. While I am glad that something positive may come from Lucy's experience, we both agree that no one testifing to Congress about Lucy's experience has a clue what it was really like. No one can begin to imagine the fear we lived with for 3 excruciating days.
This was an email that was written today by my husband, Erik. He never writes for our family blog, but I asked his permission to put his words on today. He was happy to share his view of one of the worst day(s) of our lives:
Last week our Lucy’s story made it to Capitol Hill as part of congressional testimony on drug shortages. I wish that I was the one who could have testified.
As many of you remember, we had just finished radiation and were looking forward to a month off before chemo. Lucy finished radiation on a Friday. She hadn’t really eaten since radiation started. She had been on I.V. nutrition(TPN) basically since diagnosis. On that Monday she went to school. She started to eat jello and whipped cream. She went to Ella’s softball game. And then she ate some watermelon and some whipped cream. We were so excited, it was a great day. That night as we were preparing for bed, Lucy looked at me and said, “Daddy I can’t see very well.” I tried not to panic, and hoped that maybe she was just worn out. By morning, Lucy couldn’t keep her eyes from fluttering uncontrollably.
We rushed to St. Jude only to be told we would have to wait a few days until they could do an MRI. Kate and I uneasily headed to the cafeteria, but before we get there our Doctor calls. By a miracle Lucy had not eaten since midnight, and they were able to arrange an MRI immediately. Kate and I are thinking the worst. Cancer must be spreading. It was the sickest feeling. I can only compare it to our first few days of diagnosis. We were defeated. We spend hours waiting on the MRI results. They come out and let us know that Lucy is in recovery. We rush back to her. She usually wakes up after a few minutes in the recovery room. This day she did not. I think her body was just worn out.
Kate and I load her into a wagon and head to consult the Doctor. While we are in the waiting room, our phone rings again. In the second minor miracle of the day, Lucy is still asleep. They saw something concerning on the MRI and want to take more pictures. Since Lucy is still asleep, they can still take her back. Kate and I are a wreck. We are still convinced that tumors are pressing on her optic nerve and causing the problems. We are sick. By this time it is 5 pm and we are exhausted from waiting on pins and needles all day. In about 20 minutes they bring our little girl back to us again. The Dr’s look confused. Dr. K, one of the great heroes of pediatric oncology doesn’t even look at us. I’m trying to read body language. His was telling. So they take Kate and I back to the room. Its good news they tell us. Good news in a completely warped way. It is not tumors causing the trouble. They think she has had a stroke. A relief. You are in a strange world when its good news that they think your 5 year old daughter has had a stroke. They admit us to the hospital room for the night. Wednesday and Thursday were just painful.
We watched our little angel go completely blind in a matter of a couple days. The optimism of Monday was long forgotten. By Friday morning, she couldn’t see her hand in front of her face. If I put my hand in front of her face and said ”how many fingers?” She didn’t even know that my hand was there. “It’s ok Daddy” she says, “At least I can still hear.” I had to leave the room and I balled like a baby. I was never more impressed with St. Jude than I was this day. The sheer firepower of talent that was on our Lucy’s case was incredible. While we had a diagnosis of a stroke, it was clear that they were not really sure what was going on. It was a who’s who of pediatric oncology parading through her room. And each one of them was talking to colleagues all over the country. I have been told that the email chains had gone on long into the night.
If Lucy had a chance to be healed, God was using the best and brightest of his creation. There was great debate about whether to do another MRI this day. It had only been since Tuesday. Not really long enough to see a change. My wife has done many things well during Lucy’s journey, but I am most proud of her for the quality relationships that she has with Lucy’s Docs. I will never forget, Dr. K, to his credit, grabbed Kate by the arm, and asked “what do you think? Do you think it has changed from Tuesday?” He respected and trusted her opinion. Kate says “yes” and we are off to get another MRI. While we are wheeling her down to MRI, the nurse kind of puzzledly asked if we knew they had ordered some vitamin for her I.V. We of course knew nothing. And didn’t think anything of it. We are on pins and needles again waiting on the results.
In a couple hours, Dr. D. comes to get Kate and me, and we go with her to review the MRI scans. The tumors are looking much improved. That’s not the problem. And it wasn’t a stroke after all. They have a new hypothesis. She was deficient in Thiamine. Vitamin B1. There had been a shortage worldwide. And she wasn’t getting it in her TPN. Thiamine is needed for the part of your brain that processes information from your optic nerve. Coincidentally it is also required by our bodies to process sugar.
So when Lucy ate her watermelon and whipped cream, her body used up every bit of thiamine she had left, and the light switch literally turned off. So good news. It is likely all reversible, but they don’t have a lot of data in small children, and they don’t know if any permanent damage was done. We leave Dr. D. Relieved and still concerned at the same time. When we get back to the room, Lucy is waking up. She turns her head as we enter the room. She squeals as we come in. The nurse is wearing a Scooby Doo scrubs shirt. And Lucy can already make out the characters. Just hours after they added a simple vitamin to her I.V..
So brilliant Dr.’s,and state of the art equipment, and God’s grace have come through for our Lucy. It took several weeks for her vision to return to normal. But now, months later those blue eyes are just perfect. And that is the story of how our little Lucy went to Capitol Hill.
Follow the link and then you can read the full testimony in the attached document. http://www.ashp.org/menu/News/NewsCapsules/Article.aspx?id=414
For those of you who are interested, here is my take of this horrible experience.