A few months ago I noticed my youngest daughter started having nose bleeds that just wouldn't stop. As a mother of five this was not something new, and thought well if they don't stop in a few weeks I'd take her to an ENT for evaluation. As the summer came to an end I started noticing bruising randomly in the morning. As a wife of a police officer and a degree in social work I know the healing process of bruising.
Two weeks passed and the bruising was not changing coloration, which was a huge red flag. I scheduled an appointment with her doctor for an evaluation. Just as most children Camryn hates eating veggies and fruits, and is one of the most pickiest eaters out of all my children. I was concerned about it being a nutritional deficiency. As I talked to the doctor she shared the same concerns. To be safe and sure she said she wanted to run blood work.
That day the doctor made a comment of worse case scenario being leukemia. The doctor and I discussed how that was a less likely chance, and in my eyes I was like no way my family history no one has ever had anything like that. So of course I leave the office and my little girl is saying no to needles so instead of going to the lab and upsetting her I decided to take her for ice cream and look at animals at petco. She has been asking for a ferret for a few weeks.
A few days later we do the labs late in the afternoon. The very next morning I'm in a meeting at work look at my phone and see the missed call from the doctor. I thought to myself there's no way they have results it hasn't even been enough time. Little did I know I would be hit so hard and have my heart pulled out my chest a few moments later. My husband never asks where I am or to call immediately so when I got the message from him my thought was it was an emergency for his work the typical police wife thoughts (working late, emergency he won't be home, etc).
I walked out of my meeting and called him, and all I can remember is him saying "I'm on my way to get Camryn the doctor says she's not safe at school the blood work.... We need to see an oncologist in two hours". I fell to my knees not wanting to believe the words I was hearing. My baby the vibrant, active, loving, and sassy girl I love dearly is sick. How did I miss this? Why didn't I take it more serious? Why her?
Camryn is a firecracker just like her mom, and she will never let anyone or anything take advantage of her. She's the most confident little girl, and so extremely active. Never in a million years would I think or even guess there was something wrong. But yes I was wrong I felt as if I failed her. How as her mom did I not catch this sooner? An oncologist really? This is something I should have seen or known.
We arrived at the oncologist office and received the most horrific news ever. The office staff took Camryn to a play room as they gave us the life changing news. The doctor told us Camryn has leukemia or aplastic anemia there is less than 1% chance it's a virus. I broke down refusing to believe the words I was hearing. She said we will admit Camryn in the hospital she will receive blood transfusions, platelet transfusions, and need to have a bone marrow biopsy in the morning.
The only thought in my mind was anemia well that's not horrible I mean that's treatable with eating better. Again I was wrong! As my husband did research and as we talk to nurses in the hospital I realized the severity of both the options. I then realized we were having to do chemo treatment no matter what. My heart broke again why could this not be me? Why Camryn? How do I explain to her older sisters and brother? Am I going to lose my baby?
After the surgery the doctor explained we wouldn't receive results for three days due to it being the weekend. She stated the pathologist came and looked and as preliminary they are now 75% aplastic anemia and 25% leukemia chances. They said we could go home temporarily until treatment started. They said she's confined to home no more school, no going out in large crowds, and gave us things to look for.
As the day came to get the news again another moment of impact the day we find out what this is. I was hopeful for that 1% virus chances. Yes I gave myself false hopes, but as a mom I couldn't accept what my baby was going through. The nurse came in and talked to us I was like please just send the doctor in I can't wait any longer. The doctor sits down and says "Well we still have more tests to run, but we can say without a doubt it's aplastic anemia...." I couldn't hold it in anymore my heart was ripped out of my chest once again. She explained "I have to be quite honest if we don't find a match this will be fatal within a year our best chance is testing her blood related siblings to see if they are a match".
That moment I realized my little vibrant little girl who had been healthy all her life was fighting something serious. I again felt like a failure. How did I not catch this sooner? Why my little girl? Not that I would want it to be anyone else's but why her why not me?
Fast forward to the day of me writing this as we sit waiting till we get the call whether her brother is a match for her. We start receiving insurance calls, doctors office calls, and wondering where we will stay because they don't have the technology to treat her in Austin. We have to go to a larger city for treatment, which means away from our support system for a minimum of a month but possibly 3 months. How are we going to afford this even with insurance? Of course her siblings are going to want to see her, there will be expenses for them to travel, and stay in hotels etc. Even outside of the bone marrow transplant itself which costs approximately up to $800k for her only not including her brother who would be the donor. We also have to think of treatment lifelong, which includes immuno therapy, blood transfusions etc.
If you are unable to help with expenses, as a mother I urge you to please register as a donor. The more people we have registered and donating blood the better chances for our little girl. Below are the links for bone marrow registry and blood bank specific for the facility supplying blood to our little girl.
DonationsSee top donations
- Dot Preusse
- Marylee Harris
- Rebecca Finkbohner
- LEDA UNDERHILL
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