Denae’s Story as told by her Mom, Chanda
We were a normal, happy family. We had two beautiful, active little girls, Blithe and Denae. They were 6 and 3 years old and the most wonderful daughters you could ever ask for. They always kept us laughing and enjoying each other. Just over a year ago, on July 7th 2011, we found out that we were going to have another baby. We couldn’t have been more delighted to add a new addition to our family. Our lives were calming down. We had just finished masters programs, both my husband and I. And now we were going to have a nice, calm, relaxing pregnancy. We are both teachers and were just finishing up our summer vacation. One week after the exciting baby news we went in for a routine well visit to check on our bright, active and healthy 3 year old daughter, Denae. It was July 14th. We thought that everything was fine; we even had plans to stop at the store on our way home. She seemed so fine, in fact, that she had been doing somersaults off the couch earlier that day. But we were wrong.
Our doctor found the unthinkable: a large mass in her abdomen. She had never shown any symptoms of anything wrong. He was simply checking her abdomen and was concerned. We were sent straight to Phoenix Children’s Hospital (PCH) to have an ultrasound. The next thing we knew, our lives stopped dead in their tracks. I had an appointment with the baby doctor the next morning that I had to call and cancel, explaining in tears that I had to go to PCH to find out what we could do for our Denae instead. We were admitted and Denae had surgery early the next morning. It was a Saturday. Our nurse, Dan, assures us still, that in 15 years in the field he has never seen a team move so fast, surgery on a Saturday is no common event when you are admitted Friday evening. I suspect our pediatrician helped us there. We spent 6 days on the cancer floor of PCH. We learned about hope there. The staff is unbelievable. The patients are too. Denae had a Wilm’s Tumor. Her left kidney had to be removed as the tumor had enveloped it. The cancer had spread to her lymph nodes as well, and she had some nodules in her lungs. We were told that we needed to do 6 sessions of radiation (at least) and a round of chemo.
Since Aaron and I were both teachers, we were hoping to get radiation done in time before the school year started. But now the question was, how are we going to get our child the care she needs with working parents? The answer was, we couldn’t. With the support and help from our own parents, the decision was made that I stay home and care for her.
I can’t emphasize enough that anyone going through chemo needs full time care. Since Denae was only 3, she really needed one of her parents. When you go to your appointments, you never know how the blood tests are going to turn out. She had a lot of trouble with the chemo and required 4 transfusions and another port surgery during her treatments. The doctors don’t tell you, “Go and do this when you have a chance.” They tell you, “She needs a transfusion, come into this room; you should be done in about 4 hours” (this often comes after a 2 hour visit). And this is often after you’ve already had to force your child to endure physical pain and emotional stress. It’s not an easy time. And I was pregnant. But, luckily, the radiation and chemo were doing their job and her cancer cells were disappearing, so she didn’t require any more radiation after the 7 week checkup. This was encouraging news to all of us!
Sometime during all this, we came to love the staff that was caring for us all. PCH is an amazing place. Our nurse there submitted our family for the Children’s Cancer Network’s Holiday Surprises Program. When she called me about it, I thought that she was asking us to adopt a family. Being special ed preschool teachers makes you always think about giving. Receiving was new for our family. We were overwhelmed by the kindness shown to us. We were lucky that our insurance covered the vast majority of the expenses that we required, but I was forced to quit my job, so being adopted for the holidays was a huge help for us. We received gifts for each member of our family (including our new addition). We also received food cards and gas cards which were a huge help since you never knew when we were going to have to drive downtown for an emergency room visit or a test of some sort. We are very familiar with the road from our home in east Mesa to PCH.
Further down the road toward the end of Denae’s treatments, our girls were invited to participate in the Children’s Cancer Network’s Fashion Show. This was an amazing experience for Denae at a time when she wasn’t feeling very confident about her looks. Losing her hair had been very hard on Denae (and hard on her dad who had to shave it for her when the time came!) She no longer liked to be in pictures and she didn’t like to see herself in the mirror. The fashion show was a fun event that helped ease some of that pain for her. This was a tremendous help for her self-esteem.
We actually received the news that Denae was cancer free while we were in the hospital welcoming our new baby boy just 6 months ago. Both Blithe and Denae are amazing sisters to their new brother, Griffin. Our lives have changed so dramatically in the last year, but we wanted to share with you the CaringBridge entry that we made on the one year anniversary of Denae’s diagnosis because it sums up so many of the feelings that we have dealt with on our journey:
“I would like to say that I am up for a late night feeding for the baby, but the fact of the matter is, I just can’t sleep. It is officially one year ago today that our lives stopped so suddenly and changed forever. My head is too full of memories of that particular day and what it meant to us as a family. First and foremost, I am grateful. Thank you Dr. James for being such a conscientious doctor that you found a tumor at a well visit in a child that exhibited absolutely no symptoms. What an amazing doctor! The staff members at Phoenix Children’s Hospital were amazed and impressed, as they should be. I cannot ever express my gratitude enough. We are so blessed. But as thankful as I am, the day stirs up other feelings as well. Regret that our beautiful Denae had to endure so much and grow up so fast. We really lost our baby in that week and found a strong little girl in her place. She has handled more than a lot of adults I know. I try not to dwell on that, but it’s rattling around my head tonight. Other thoughts that are preventing me from sleep tonight are that of love. I am thinking of the four people asleep here in my home that I love so much. I have never understood love, patience and acceptance like I do now. I also have never known so much about hope. Nothing like a crash course in that! I stand by that nothing can teach you more about hope than six days on the cancer floor at PCH. I am really quite grateful for who we’ve become as a family. We are better at working together now. We are better at not sweating the small stuff. We are better at sharing our love and acceptance with others. We are a better family than we were a year ago today. I know the road is long and there are certainly going to be more bends in it that I can’t see yet. But I’ve learned that we have a strong support system in all of you as well as each other. We could not have survived this year without the love and support we have been given. It is a personal goal for the future to help others as we have been helped. We can do this because of all of you. Thank you.”
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