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Our New Normal

Posted by admin on February 10, 2010 in Uncategorized |

We are going to Duke Children’s Hospital today. We will be there at 7:00 a.m. and I’m not sure how long we will be there. It doesn’t matter. We could stay an hour or two, or if they need us to, we will be there until 9:00 p.m. It’s the Children’s Hospital annual radiothon. Seven years ago this month, we made a trip to Duke on a Friday afternoon.

In looking back I guess I noticed that something was “not right” around Christmas. Normally any 6-year-old would have been bouncing off the walls, but McKenna took a nap halfway through opening her presents. She just seemed to be so tired. A few days later she was at a friend’s house and had a nose bleed. Not just any nose bleed, but one that wouldn’t stop. I called her pediatrician the next day, a Wednesday.

They drew some blood and sent us home with an antibiotic and instructions “not to worry.” So I didn’t worry…until Friday.

On Friday she went to school and I went to work. Around 1:00 in the afternoon I got the call. It was her pediatrician. She asked, “Where is McKenna?” I told her that she was at school. The doctor said, “Go get her right now.  You need to go to Duke Hospital, they are waiting for you.” She said, “We think that McKenna has leukemia. We just got her blood work back and she has no platelets, no red blood cells and very few white blood cells.” I didn’t know what half that meant. I don’t remember much of the conversation beyond the words “leukemia and they are waiting for you at Duke.”

We walked into Duke Children’s Hospital at 3:00 p.m. They ordered more blood work and we waited. The clinic emptied out, and we waited. At about 6:00 she came back in and said that McKenna’s blood work was concerning and they wanted to do a bone marrow biopsy. Now.

So they applied some cream to her hip, and started an IV and gave her some medicine to keep her calm. They put a Disney movie in and they let me hold her hand while the doctor took the marrow. I remember watching her place something so small, but a part of my baby, into a tube to be tested and being so scared. And then we waited.

We found out that night that it wasn’t leukemia but we knew we had a seriously ill little girl. For months, every Friday, we spent at Duke getting blood drawn and waiting to see if her platelets had started trending upward again. She was diagnosed with aplastic anemia and her life changed completely. No more learning to ride her bike, no more trampoline, no more gymnastics. No more running and playing. No platelets meant that she could bleed internally just from a simple fall and she could get very sick over something very common, like a virus.

A few months later her doctor asked if McKenna could go to camp. The hospital provides camp for a week, free of charge, to patient’s that wouldn’t normally get to go to camp.

My six-year-old, critically ill child, going to camp??

Her doctor assured me that she would be with her and would be keeping a very close eye and honestly, we just didn’t know if she would ever have the opportunity again.

So we packed her bags and in July she left to spend 6 days just being a kid, surrounded by nurses and doctors, residents and interns, and she got to play and laugh, and yes, she was homesick, and so was her mommy. But she had fun and she made friends, and for a little while it wasn’t about test results and what she couldn’t do anymore. It was about laughter, and playing games, and being just like everyone else, around other kids who had to take medicine and get blood draws. But for a week, they were just like everyone else, and if they had to rest, that was okay, or if they needed a breathing treatment, that was okay, or if they got hurt and everything had to stop for a bit, that was okay too and no one stared, or made fun, or thought they were weird, because it was everyone’s normal.
She came home, tanned, tired, but happy in her heart and with camp songs, and friends and memories. Precious memories. And we have done this every summer since for 7 years.

Eventually her platelets started to go back up, her red blood cells and white blood cells increased. We still have go to Duke to have her bone marrow checked and blood draws but right now, she is doing great. I still get apprehensive if she seems overly tired and I tend to be a bit over protective, but that’s our normal.

Today though, we get to go and tell a bit of our story. We get to talk about how much Duke Children’s Hospital means to us and how much we love Camp K. We get to help raise money so that the kid who is walking into Duke today and entering into a new normal can learn camp songs, make friends and bank memories to hold on to while they wait for the next bone marrow biopsy, the next CAT scan result, or for the next blood draw.

The medicine is important, the research is important, but the memories last forever. Thank you Duke Children’s and thank you Camp Kaleidoscope for giving us the memories to cherish for a lifetime.  And thank you Bill, Lynda, and Vanna and all of the volunteers at 101.5 FM for doing the radiothon and helping the kids. 

So if our story has touched your heart consider making a donation today, for McKenna and all the other kids who have a new normal that they live with every day but for a week each summer they get to go to camp and be “just a kid.” This overprotective, extremely grateful mommy thanks you.

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