I’m going to get a little personal on you now. Today we are throwing a party for our daughter Olivia. We have a bounce house, lawn and water games, bbq and lots of friends and family to celebrate our little girl. But this is not your typical celebration. It’s not her birthday. (Thank goodness! She’s already getting too big too fast!) Instead, we are celebrating her being CURED of cancer.
When Olivia was five months, I noticed that hers right eyelid wasn’t opening all the way. I noticed a tiny change (I am a photographer, after all!). Over week, it kept getting worse, so I took her to a pediatrician for a check-up on July 2. That doc thought she was fine, but I knew something was wrong, so we made an appointment with a pediatric ophthalmologist on Friday, July 6.
The pediatric ophthalmologist couldn’t see anything that would cause the ptosis (we now had a name for it) with any of his tests or special equipment. Hurray! … Or so we thought until he said that there was clearly something wrong. Since he couldn’t see the culprit, he wanted Olivia to have an MRI—first thing Monday morning.
Worry, dread and about 100 other emotions came flooding in with that news. We tried to stay positive, but we knew he was concerned because he wanted that MRI right away. It was one of the longest weekends of our lives without a solid answer. In the mean time, Olivia developed more odd symptoms that weekend. Like both of us, Olivia has really pale skin. The right side of her head and face stayed pale and dry while the left side looked like it seemed to be working overtime in that hot summer.
Our 5th wedding anniversary was on July 6th. We tried to have fun at some belated 4th of July festivities, we tried not to Google and to stay positive. It was one of the most terrifying times of our lives as our minds ran rampant without any solid answers.
Monday morning was hard– not just the worry, but I couldn’t nurse her after midnight because she was undergoing general anesthesia. We watched as she was wheeled away on a gurney in the teensiest little hospital gown adorned with teddy beard and puppy dogs carrying balloons. She had her pacifier and her blanket and bunny lovies, but she was hungry and didn’t want to be separated from us. She cried, and our hearts ached. Then we waited. We waited and waited. It was probably only about three hours, but it felt like eight. I brought magazines to read but I couldn’t focus to save my soul.
Finally, the nurse came out. We had a moment of relief that the procedure was over and we would be with Olivia again. Wrong. The nurse had come out to tell us that it was taking a little longer than expected. Olivia’s pediatric ophthalmologist was there in the hospital and would talk with us. The news of the extra time was a downer, but why was her ophthalmologist at the hospital? He was supposed to be on vacation that week. He wasn’t there for rounds– he was there for us. He came to see how Olivia’s scan went. He came into the hospital on his vacation day. He must’ve been really concerned too.
At long last the procedure was complete and they called us in to see our daughter. She was still asleep from the anesthesia, had an oxygen tube in her nose, an IV in one tiny little hand, a blood pressure cuff on the other arm and a heart rate monitor on one of her teeny toes. It was hard to see her with the wires and tubes. We each held her and hugged and kissed her with tears in our eyes. She was starting to stir and wake up when her pediatric ophthalmologist walked in. He greeted us and then suggested that we sit down. Oh no! The nurse took Olivia so that we could sit and pay attention without distraction. Then, the news.
They found a tumor in her chest. It was on her sympathetic nerve which, in part, helps to control eyelid muscle movement. It also controls sweat glands on that side of her little body. It was cancer. Our 5-month-old baby had cancer. We couldn’t believe it. This is not the sort of thing that could happen to our family. It couldn’t be true.
As soon as Olivia woke from the anesthesia, we held her, kissed her and hugged her so tightly as the tears streamed down our faces. Not wanting to let go of my little baby girl, I carried her as we were escorted to the oncology center to meet with a pediatric oncologist.
There was no sugar coating anything for us by that point, but mostly everything that the oncologist said to us was a big blur to me. I felt like a freshman on the first day of college statistics as I sat there in shock, listening but not retaining much of what was said. Thankfully my husband was able to listen, understand and retain the information that was being poured on us.
What is a neuroblastoma? It’s a tumor that starts when a blast cell that is supposed to grow up and become a nerve cell starts dividing in its immature state. It’s a cancer that typically affects infants and young children and can occur in many areas of the body. Sometimes it starts even before the baby is born; which was probably the case with our daughter. In some caes, it disappears on its own. The average age for neuroblastoma diagnosis is about 18 months of age, but it is occasionally seen in teenagers or even young adults. It is found slightly more often in boys than in girls. It’s a rare disease. In the US, only about 800 new cases of neuroblastoma are diagnosed each year.
The MRI and diagnosis started a week long-barrage of medical procedures and tests. On Tuesday she had a bone marrow aspiration to ensure that the cancer hadn’t spread into her marrow. Wednesday she went in for a CT scan with an injection of radioactive contrast dye to confirm that the cancer hadn’t spread. On Thursday, they scheduled surgery — for the next day, Friday the 13th. Which, if there was anything as scary as having cancer, it was having surgery to remove cancer. Her surgery lasted more than five hours, but surgeon came out with a smile on his face – he had removed 100% of the tumor. And unlike other surgeries, he said, if she went for two years from that day without a reoccurrence, her risk of having it again would be as low as any other child’s. We call that “cured.”
Talk about the week from hell. No parent should have to go through such terrifying events with their children. We sometimes can’t even believe that we did.
This is a photography blog, and I know that this is the most I’ve ever written here, but my fingers just kept moving as I sat down to recall our story. There is a happy ending here. I promise. If you haven’t lost interest yet, keep going! Here are some images of Olivia taken during the “week from hell.” They are just iPhone photos, and I’m kicking myself for not having taken more at the time, but I was busy being a mom of a child with a life-threatening crisis.
The photos above were taken while we were waiting for Olivia to get her IV in preparation for her bone marrow scan. I made sure to bring some of her favorite toys to keep her busy! Olivia’s godmother accompanied us that day and helped us try to remain calm and gave lots and lots of love. Another very good friend came to help us the day that Olivia had the radioactive dye injected into her. We will be eternally grateful for our wonderful and loving friends who helped us through this terrifying week. You know who you are. Thank you! Again. We will never forget that you held our hands, let us cry, hugged and loved us.
Below, Olivia is doing her best at getting that gosh darn IV tube our of her hand! They had to tape her tiny little hand to a paddle to prevent her from pulling the tuned and needle out. She did still manage to play with some toys with the paddle on though.
Post bone marrow scan. Still not yet awake on the left and then at home snuggling with a new giraffe friend from Auntie. She still sleeps with that giraffe.
Surgery day. Absolutely the most utterly terrifying day of our lives. The longest five hours of surgery and seven hours of waiting – from the time she left our arms (everyone in tears) to the time we were able to see her and hold her again. It felt like an eternity. They were really good at updating us when they had news, but it was still so insanely difficult and scary. The unknown. The “what ifs.” Too dreadful to contemplate all over again, so I won’t. 100% of Olivia’s tumor was successfully removed. Her surgeon performed a miracle for us that day. Which, by the way, was Friday the 13th. Yah. I didn’t realize it at the time, and no one was going to mention it to me either. I’m not all that superstitious, but I’m glad that I didn’t realize what the date was until the 14th!
They put Olivia’s socks on her hands to keep her from pulling out her oxygen tube. Once she woke up, this was a constant battle. She wanted that thing OUT!
The images below are a little more uplifting. These are some of the first smiles and laughs that I got to hear post surgery. Her laugh had always been pretty infectious, but hearing it for the first time after surgery, well, there was no better sound!
Back to playing again a few days later. We spent almost an entire week in the hospital. Surgery was on a Friday. We were discharged on a Wednesday. I refused to leave the hospital and only left her room to shower. The doctors tried to get me to leave and go get some good sleep at home. There was nothing in this world that was going to separate me from my baby girl. Nothing. I was in full mama bear mode. Silly doctors!
This is one of my favorite images. Olivia with all of her “friends.” Some old and some new.
Time to go hoooooooome!!!! Yipppppeeeeeeee!!!!! Two days after discharge we got the wonderful news that the pathology reports and lymph nodes were negative for any sign of cancer. Time to break out the new onesie!! A large board of doctors, including Olivia’s oncologist, surgeon and pediatrician, as well as prominent doctors at the hospital, convened to discuss Olivia’s case. During this discussion they deemed it unnecessary for Olivia to undergo chemo or radiation. Due to her age, the location of the cancer, the stage it was in and how quickly we found it – not to mention that it was all removed – she was considered cancer free and therefore no need for further treatment was needed. Just lots of close follow ups to make sure that nothing was growing back again.
Here she is now. Two years later. She’s still the apple of our eye. Spunky, fun, tenacious, stubborn, intelligent and pretty gosh darn funny and adorable. She’s a big sister now and I’m pretty sure that she is seriously the best big sister ever. She is lives up to her new job title perfectly. Olivia still has lots of follow ups and a strict schedule of procedures that she adheres to and will for years to come. But we wouldn’t have it any other way if it means that those procedures will ensure that she is still cancer free and remains so.
So. Why the cranes you ask? Here’s the story: A Japanese legend promises that anyone who folds a thousand origami cranes will be granted a wish by a crane. Some stories believe you are granted eternal good luck, instead of just one wish, such as long life or recovery from illness or injury. The crane in Japan is one of the mystical or holy creatures and is said to live for a thousand years, that’s why 1000 are made.
When I reached out to friends and family members a few weeks ago asking for their help in this endeavor to fold 1000 paper cranes, I never imagined what an overwhelming response we would receive. We’ve received cranes from across the country and across the world. There are even some cranes that will be coming to us FROM Japan as we have friends that just moved to Okinawa! Some of the cranes that we have received have special meaning attached to the quantity of the flock which makes them all the more special and meaningful. These cranes in this photo session came from a family in Seattle who spent a week folding cranes for Olivia. Childhood cancer holds a special place in their heart. While no one in their immediate family had the disease, they knew quite a few families that were effected by it.
Today, Olivia is so happy and healthy that to look at her, you would never ever know what she went through as such a tiny infant. She has a few scars from her surgeries and her right eye doesn’t open quite as wide as her left, but otherwise, she’s just your average little two-year-old girl! Well. Maybe not so average after all.Today, Olivia is so happy and healthy that to look at her, you would never ever know what she went through as such a tiny infant. She has a few battle wounds aka scars from her surgeries and there is still some notice of the ptosis in her right eye, but otherwise, just your average little two-year-old girl! Well. Maybe not so average after all.
We will be putting Olivia’s cranes in a large art installment for her to hang in her bedroom. If we have an excess we will send them to the peace monument in Hiroshima.