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Camryn's Relentless Battle

$28,237 of $35,000 goal

Raised by 443 people in 23 days
Never would I have thought I would be sitting here writing a story about the struggles I hear about on news, in movies, or even read on Facebook from time to time. Last week my life changed and like every moment of impact in our lives my whole world was flipped upside down. I've been blessed with five beautiful children, two biological and three bonus.

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. 

https://weareblood.org

https://bethematch.org/support-the-cause/donate-bone-marrow/
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I have to first of all thank everyone for every word of encouragement, donation, and most of all thoughts and prayers. These Houston doctors are beyond amazing and one of the biggest blessings to our family. Although this week did not bring us the best news what we have is plans and answers.

This week we discovered not only does Camryn have a rare blood disorder, but she suffers from MDS which is one of the most rare syndromes seen in a child. Unlike aplastic anemia MDS causes the blood cells that Camryn does create are abnormal, which means they are underdeveloped and die faster.

The doctors encouraged us not to Google or go further in research since not much is posted for children only for adults. Due to this diagnosis Camryn has been ruled out for immuno suppressive therapy (medication for treatment) and our only hope is transplant. She is also at a higher risk of MDS turning into cancerous cells.

She will undergo another procedure to determine whether or not the cells are cancerous as of right now. They will also be checking to see if there is any significant progression in the bone marrow since the last biopsy. My heart again has been ripped from me I'm so scared of what is to come. My Blue Family I cannot thank you enough for the love and support near and far. Thank you so much! Continue to spread the awareness I know Camryn's match is out there. We can reach them!

This photo is of Camryn and her dad while she was receiving transfusions the other day. Be safe all and take care!
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Quick update we decided to transfer Camryn's care to Houston. We stayed overnight Tuesday for her Wednesday appointment. That was the best decision we ever made it took us 45 minutes to get to the office being a few blocks away. The medical group is beyond amazing from the level of confidence to the ability to articulate exactly what's going on to what the plan is. I left Houston with a sense of confidence and hope I haven't felt in a long time.

This will require us to travel to Houston up to twice a week, and could potentially cause us to stay for an extended period of time. I think it's well worth the level of care she will be receiving. Camryn loves the doctors there and the facility she is excited to go back. I had to ask her to repeat herself when she said when can we come back. Yes I was pretty shocked myself.

On our way back we stopped at our friends shop Relentless Defender to pick up shirts they made for our fundraiser. We are extremely blessed and grateful to have met Aaron and Danielle about 4 years ago. Camryn loves to wear their shirts, so she was extremely excited to have one made for her cause. We will have a table selling them at the event on Saturday, September 15th for $20 each. Thank you all for the continued thoughts, prayers, and support during this time!
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Before the night ends I wanted to share some promising news. We received a call from Texas Children's Hospital today to review Camryn's records. The hospital has extensive experience treating Aplastic Anemia and they are able to get us in next week. We have all records transfered and it seems like all labs are in. Now crossing our fingers for promising news for treatment to start soon. Our appointment is on Wednesday thank you all for the continued thoughts, prayers, and support as we battle through this with our little girl.
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So yesterday was Camryn's follow up appointment. We received the results that her brother is not a full match. This means that bone marrow registry is pretty much our only option if that's our next step. They have to run more tests, which will take a few more weeks. Once we receive those treatment will start. This is extremely complex and although there is meds that can treat some of the symptoms it's a long process. We have been told she will not likely return to school until Fall next year we really won't know until treatment starts. I'm one scared mom that's for sure I can't even explain my feelings worried about so many things. I'm just in disbelief on how long this process takes its shocking, but I would rather them get it right whatever that takes. Camryn is still being herself and trying to get me to remain happy and positive. She amazes me daily she's so much like me it makes me proud. Again words can't express how thankful we are for everyone's support.
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Raised by 443 people in 23 days
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