Tuesday, November 3, 2009

Natalie's Journey--a story of a sparkly princess battling leukemia

Written by Tammy Burraston....

I am the mother of a four-year-old cancer survivor. My daughter, Natalie, was diagnosed with Leukemia almost three years ago. After six weeks spent in the hospital without a diagnosis, she was finally diagnosed on October 12th 2006, the day before her second birthday. She has surgery and began chemotherapy the next day—her second birthday.

Pediatric cancer turns your life upside down. Somehow you accept the uncertainly of your new world; because you have no other choice and you move forward. Natalie received chemotherapy for twenty-six months. She had a central line in her chest during that entire time, which could not get wet and required weekly dressing changes.

Natalie has spent around 135 days inpatient in the hospital. She has had general anesthesia 24 times, had six surgeries (including having her gallbladder removed when she was three years old), she has had five bone marrow biopsies, and has had 17 spinal taps where chemo was put into her spinal fluid. Natalie has had major infections in her blood, one required her central line to be removed and replaced again.

Natalie had feeding and GI problems before cancer and those problems were exacerbated by treatment. She had a tube put in her nose (while awake) seven times before finally having a more permanent feeding tube placed. Natalie is still on a feeding tube. For more than two years, Natalie suffered from abdominal pain. During the early part of treatment, Natalie lost her ability to walk and even to sit. She went through physical therapy to regain her strength. She has been on more antibiotics and drugs and had more time spent in clinic than I care to remember. But nine months after finishing chemo, Natalie is doing amazingly well. She is now full of energy and plays and has fun with her brother. Her love of life has always been there. She is a joy to everyone she meets and has a sparkling personality.

One of the remarkable things about Heroes for Children is that the founders really understand what families who have a child with cancer feel like, they have both been there. They know first-hand what the experiences of cancer life are like, and they are uniquely positioned to help those of us who find ourselves facing the reality of having a child with cancer. The help they give is meaningful and creative. They give financial assistance, which is terribly important to those facing cancer. But they give more than that. Through some of their other programs, they give things that make an even more lasting impact than money to pay utility bills or medical bills ever can. They are in tune with what a cancer family actually needs- to have their life back…even if it just for a short time.

Because they know the experiences of cancer life, they know cancer families don’t just leave their child with any old babysitter and go out for a night on the town. Cancer families can’t do this because our kids need special care. That is what made the Valentines Dinner so special for us. If it hadn’t been for HFC, we would’ve had our valentine date at home. Our valentine dinner would have been shared with our sweet children at the table. Which is great, but doesn’t exactly equal a romantic valentine dinner.

The Valentine’s Dinner hosted by Heroes for Children was perfect because our children were in the room next-door under the care of professionals and surrounded by the loving HFC volunteers. We knew they were happy and safe, but we were able to have a dinner together. Just my husband and myself. Those moments are rare. To top it off, they had a photographer come and take family pictures before we dropped our children off. Our children had a fun and memorable evening and we got pictures…all three are things that cancer families cherish.

(Natalie at the 2009 Valentine's Dinner)

After Natalie got sick, life seemed segmented. When memories came to mind, I always thought of them in terms of before and after she got sick. The Princess Ball when Natalie ended chemo, provided another milestone event…grand and memorable instead of memorable and hard. Now I could add another chapter, the after chemo chapter, to celebrate. I think it would’ve been memorable and created that idyllic ‘after’ no matter what, but the grandness of the celebration was like a springboard to propel forward.

Natalie has been ALL about princesses for some time. Last year before her birthday she told me she had never been to a princess ball before. I had known that I wanted to do something very special to celebrate her finishing chemo. I wanted it to be something she would always remember, something that would make her feel as special as she is to me. I wasn’t sure I could execute the vision I had on my own. I had read about HFC’s Milestone Celebrations some time before and decided to contact them to see if they would be willing to help. I could not think of a better milestone for a child with cancer than finishing up treatment.

They quickly agreed to help and through their hard work and the generosity of many others, HFC provided Natalie with an amazing milestone celebration. Natalie has “pretend princess friends.” She tells us they are pretend, but she enjoys playing make believe about them. She was even pretending to go to a ball in the weeks leading up to her own ball. It made the upcoming surprise all the sweeter.

The Princess Ball was even more amazing than I could have possibly imagined. Everything was catered to children. It was a real fairy tale princess ball, complete with all the details…a surprise dress, a grand entrance, a dance with her prince charming, and time with her “princess friends.” Natalie loved the night and felt so special. It was truly a celebration of her and the amazing milestone she had reached. Several weeks after the ball, Natalie asked if she could go back on chemo so she could have ANOTHER princess ball. I’m not sure there is a better testament of what the ball meant to Natalie than that.

It was quite an experience for our entire family. The only thing I would’ve changed about that night is to make it longer, I wished it wouldn’t end. We were all on cloud nine. My husband, David, slept in his tux that night…he wanted the magic to continue that much. We woke up the next morning and it felt like a fairy tale. The still crisp tux let us know it hadn’t been a dream.

At the beginning of treatment, we were told Natalie would likely be treated for 2 ½ years. That was overwhelming. At that time, I could hardly imagine making it to the end of treatment. That night was a celebration of the journey Natalie had been through and our journey with her. It was a celebration of her triumphs and what she had overcome. After more than two years, she was cancer free. Reaching that milestone was a culmination of so many emotions for me…so many emotions and memories were triggered.

The music of that night brought back so many emotions in a way that only music can. Our little family clung to each other on the dance floor, eyes closed, arms wrapped around our Natalie, tears streaming down David and my face; as they played our little princesses’ song. The interesting thing about the night was that it evoked memories, but instead of evoking memories of the hard times, it evoked memories of moments where our hearts felt the most gratitude, where we felt like we were on top of the world. The interesting thing about the cancer roller coaster, is that because the low moments are SO low, the high moments are so high they take your breath away. Never before in life, have little moments and things made me feel so deeply and intensely.

My husband surprised me with a special song that night that he and I danced to. After Natalie finished her most intense part of treatment we took a little family trip, just the three of us…to celebrate making it through. We were beaten down. She had two major blood infections six weeks apart and had been experiencing the worst of her abdominal pain. Watching her in pain for so long without being able to relieve it was breaking our spirits down. We needed to escape the medical world. We took her to Sea World. As we crested the top of the mountain and began our decent into San Diego, David put this same song on. It was night and the air was full of moisture. We had the windows down and David had this song repeat over and over again for the 40 minute drive back down the mountain. He sang the song to Natalie and I in spanish over and over again…his voice cracking as tears ran down his cheeks. The symbolism and feeling of the moment were amazing., as were the next three days. It was another milestone in Natalie’s journey. It was a milestone of the heart and I did not think it could be duplicated.

I have often said that I wished my heart was a camera because not only do I want to capture pictures of moments I want to remember, but I wish there was a way I could duplicate the feelings those special moments created in my heart. The night of Natalie’s princess ball did that for me. The memories of that night in San Diego and other precious ones were woven together, forever integrated with the night of her princess ball. The princess ball helped my heart recall all of the other moments and feelings along this journey that were so special to me.

Adjusting to life after the end of treatment hasn’t been the easiest thing. New worries and stresses come along, along with a change in role. I found that during treatment, I just had to keep going to get through it, I didn’t have time to stop and mourn the losses Natalie faced or really even think about things. Since chemo ended there has been time to let those feelings surface. The night of her princess ball has been a help to me on several occasions. I think that is what means the most to me. It continues providing me with hope.

New memories were made that night. New photos of the heart were taken. It was a glittery night, full of hope, happiness, and magic. The new memories made were healing, replacing many old ones. Natalie’s dress was full of glitter and everywhere she went, glitter trailed around her. That night was like pixie dust for my soul. The memories of that night continue to provide me with hope. When days come along that I feel worried, I can close my eyes and think of that night and it renews my hope. I imagine that night along with other memories and lessons I have learned, will continue providing my soul with pixie dust throughout my entire life.

1 comment:

Marco said...

I like this kind of articles, some time ago when I was in college conducted a similar study on lymphoma leukemia, it is very interesting, thanks for sharing the info...these stories are very sad but they help us change our outlook on life, thanks for sharing this very interesting post