I am constantly asked, "How is Ashlynn?" It is honestly hard to answer this. Ashlynn...is Ashlynn and that is who she will always be. She wakes up each morning singing, dancing, telling stories, and being as wild and crazy as can be. She is beautiful in every way you can describe a beautiful two year old. I wish there were words out there to describe her spirit. It is inspiring..Ashlynn is inspiring. Neurofibromatosis will never get Ashlynn down, and I realize this more and more every day.
Ashlynn struggles only with two things during her whole chemo treatment. She struggles with the pain. Because, yes there is pain unfortunately. The port access is never easy or pain free. She is well known for pulling her port out once it is placed. I can think of atleast 3 visits where we have had to re-poke Ashlynn more than two times. But, Ashlynn is a fighter..she does the only thing she knows how to do. SHE FIGHTS. Ashlynn also has problems with her nerves, this happens primarily at night. She will wake up sore and whiny, crying in her sleep. Usually a hug and a kiss, a few children's pain killers and sometimes a bath will fix this. The doctors believe it is from the chemo, granted NF is known to cause this as well. The doctors describe it as a tingly feeling she gets. An adult can feel this as well if they allow their feet to fall asleep for a long period of time and then go back into movement.
Ashlynn's other struggle is one of the most heart breaking kind. Ashlynn has had a few very key players in her life leave since she has started chemotherapy. I'm not really going to go into this conversation as those people did what they felt they had to do. I have my own opinions as well as how everyone else tells me how I should feel and react to this. My only thought on this is, FORGIVENESS. I would like to take a few seconds and sentences to tell those people. I forgive you for doing this, I will teach Ashlynn to forgive you as well. Maybe your just not strong enough to be in her life thru all of this. Maybe I have made you mad and you have moved on. This is me saying...I'm sorry and I forgive you for all that you have done. I'd like you to come back, not for me...it has never been for me. But, for her...she deserves better than this.
ANYWAYS...that was my little spiel that will never be heard. We are taking a two week breather before we start Ashlynn's second round of chemo. We only have about 12 more months of treatments if all goes well. Her MRI came back stable and the tumors are not growing. She also does not have any other tumors than the ones she already had in her first MRI. 

"If we really want to love, we must learn how to forgive." -Mother Theresa
"Courage doesn't always ROAR, sometimes courage is the tiny voice at the end of the day that says "I will try again tomorrow."- Mary Ann Radmacher

I know I haven't posted in awhile but, so much has happened lately I've been a mess of tumbled emotions. University of Michigan did end up diagnosing Ashlynn with Neurofibromatosis Type 1. All together now she has 8 café au lait spots. She has one optical glioma and 2 UBO's (Unidentified Benign Objects) on her brain. They are common with NF and are known as NF spots.
Ashlynn starts chemotherapy on August 13th after receiving a port. She will receive treatment once a week for about a year.
For those of you whom do not know what NF is. Neurofibromatosis is one of the most common disease you have never heard of. 1 in 3,500 people have NF. The disease varies with each person, some will have it extremely bad. Some people have NF for their entire lives and never even know about it.
With all of this information in my head I'm very...off the wall so to say. I'm heartbroken to my very core, NF is not deadly. Some of the symptoms in their worse condition may be however. Yet, I find myself grieving for my daughter. Afraid for her future, afraid for the pain, the tests, the treatments. I cannot find words to describe how I even feel. I lack the vocabulary to describe the deep down hurt I hold. The only way I can describe it is, some part of my soul has been dislodged and will never return.
I stress daily to the point I cannot think of anything else but, the chemotherapy Ashlynn will go through. How will it affect my baby? How much more pain will she have to be in throughout her lifetime. Yet again, I realize she might be a lucky one, she might never experience any other symptom. But, even the risk alone scares me.
This is not a pity blog honestly. I'm hoping that by putting my thoughts out there clear as day for the world to see, another Mother whom might experience this will be able to say "I'm not alone." Because Alone is how I feel.
Ashlynn's other family members seem to down play a lot of the disease. They do not understand why I grieve when she has the chance of being fine. They lecture me about remaining strong. Trust me...you can be strong on the outside for your child yet crumble on the inside.
Her father is almost always there, and seems optimistic about getting her better. Yet, I'm not comfortable sitting down with him and throwing all my feelings out there. If you have ever felt that way...I'm sorry and you are more than welcome to email me and throw them all out there. I do not judge, I listen and I'm just there.

After all this venting...here are my goals for tomorrow.
1. Pack our bags for next weeks trip to the University.
2. Make sure Ashlynn gets to enjoy the county fair and just have some carefree time with her dad.
3. Go back to the library and look up more information at the disease.
4. Pray...and Pray some more
5. Spend atleast one hour not thinking of anything to do with NF1.

My quote of the day for you and myself is...
"Even the darkest night will end and the sun will rise."
-Victor Hugo Les Miserables

Prepping for MSU

Ashlynn's next appointment is Thursday the 11th at Michigan State University. We are going to visit a Nuero-ophthalmologist. He is supposed to be one of the best in the state, even out ranking University of Michigan.

I'm not sure how well you can see the letter they sent me, I blurred out everything to just point out to you the length of our appointment. Atleast 4 hours, and we need to be atleast a half an hour early. Let me tell you I'm going to be bouncing off the walls. At this point I'm anxious to find out any new information however. I'm also hoping they will be able to tell me more about when the chemotherapy and radiation may start.
Their website gave me a lot more information about what exactly they do. It eased my nervousness a little bit and hopefully I can start to explain to more people what is going to happen.

http://neurology.msu.edu/patients/neuro_ophthamology.shtml

Ashlynn is in a very good mood today and was up to her normal antics. We took her to her cousin Alex's baseball game last night. She really enjoyed herself! She got to see her grandparents and a her aunt and uncle. There was even a special visit from Uncle Kevin, which we got to hear about the whole way home. I noticed last night that Ashlynn turns her head more than normal children to be able to see out of her good eye. Also when the light is brighter for her she closes that eye a little more as if to shield it. I'm waiting to find out more information from our local ophthalmologist about when she will be put into glasses to protect her right eye. It seems like she struggles more daily to see out of the right eye and I worry about her vision.

She never hesitates for a CHEESE moment.

Today my Goals Are

• To maintain as much of a normal night at work as possible.
• Research more into my MSU visit
• Call a therapist about being seen for counseling
• Help another person in need

 

My quote for the day is

"Sometimes the questions are complicated and the answers are simple.”

Dr. Suess

Back home in Momma's Arms!

Ashlynn came back home today at noon. The person she stayed with is kind of in denial about the whole situation. I'm just hoping she didn't have any flare ups while visiting with his family. Her eye today looks a little more rough. The eye lid appears swollen, and the eye itself is dilated for no apparent reason.

Ashlynn was very animated today, giggling while eating her nachos with Mamaw Caudill. She is very adamant that she wants to see her Papaw and Mamaw now. While having a pretend phone conversation with Mamaw I noticed a small lisp to her "R". I doubt that is from her condition but, it scares me all the same. I'm pretty sure everything scares me right now though.

I've come to the conclusion I'm facing depression. My moods are so abnormal, I feel my feelings jumping around like little marbles on a trampoline. Everytime I look into her small beautiful face I find myself asking God.."Why?"

I've always noticed something different about Ashlynn. My pregnancy was rough, I ended up on bed rest for the last month of it. I blamed it on the stress I was going thru. Ashlynn was the greatest blessing ever sent my way but, unfortunately at the time not everyone looked upon it like that. When Ashlynn was 6 months old I started to notice she didn't want to roll over or put any weight on her legs. Most babies will jump in a jumperoo...Ashlynn thought it was amazing to make it fly all over without ever putting her legs down.
At 12 months Ashlynn still had difficulty rolling over, she did not walk or crawl. She was slowly managing a butt scoot across the living room. She also did not say any words and cried for all her needs to be met. I called our local Early Intervention and had Ashlynn admitted to the local Physical Therapy Department. Ashlynn officially walked on August 2nd, of 2012, at 18 months old.

Today Ashlynn scores at a 3 month delay in only her self help skills and gross motor skills. She is actually advanced with her fine motor skills and cognitive thinking. She can put a puzzle together so fast, it amazes me. Her favorite activities involve water, the park, and going for a ride sticking her hand out the window. Her favorite foods are frenchie fries, cereal, watermelon, apples,and chocolate milk. She says "Please, Thank You, Your Welcome, and Excuse Me" whenever necessary and without cue.

My life quote that I will share with all of you is "A wrong turn can lead you to paradise." At this point in time I'm waiting for that newest fork in the road.

I also leave you with
“There is only one way to happiness and that is to cease worrying about things which are beyond the power of our will.”
 Epictetus

A Day of Free Thought

Ashlynn is visiting family today and not by my choice. I am struggling to deal with this grief I have for her without seeing her beautiful face. I miss the chirp she makes after begging to cuddle and snuggling into my side.

Today My Questions Are

Will Ashlynn honestly be diagnosed with NF1?
Did my Bubba possibly have NF1?
After finding 2 more Café spots.. Will I suddenly find more?
How will the chemotherapy or radiation affect her?
Why is this happening to my little ray of sunshine?
Will Ashlynn be behind in school?

I feel as though I struggle to find answers to these questions. Reading a website or a pamphlet and then going back thru and rereading it. I want to scream and throw whatever I am reading because it is not giving me the answers that I want. At times in the day I can feel happiness and joy, but at other times I struggle not to break down, I over think the situation and stress myself out.
A mother's love is honestly the strongest emotion in the world, I believe this with all my heart. To consider the fact that my baby will have to go into a battle head on. Knowing she will come out painfully and slow. Is truly today's biggest struggle.

 

My goal to deal with today's thoughts...

A. Go for a late night walk.
B. Talk to my husband about it.
C. Call a family member and catch up on their life (in hopes to keep my mind off mine).

 

 

While I have a lot of fear in my heart and mind. I am also very optimistic. Ashlynn's tumor doesn't mean she has cancer. Ashlynn is a very happy girl and is otherwise extremely healthy. I am truly blessed to be this little girl's Momma. Her strength throughout the developmental delay, and our rough pregnancy shows that she really is capable of anything that is put in her way.

 

A few very good sites to get information on NF1 are...

http://www.genome.gov/14514225

http://www.childrenshospital.org/az/Site1085/mainpageS1085P0.html

 

 

The Beginning

Ashlynn Kay a beautiful, sunny, optimistic, bossy, stubborn, ray of sunshine, brunette, cute, short, adorable, baby doll faced, girl. The child who created the Mom I am today. What started as a fear in pregnancy is now a fear as a child. While pregnant I feared for her an the type of mother I would be. I worried about the world I was brining her into, and the future for both of us. After realizing that these things were all in my control, I have a greater fear...
Her Health

In December of 2012 just shy of Ashlynn's 2nd birthday we started noticing a slight turn in her left eye. In March of 2013 she was diagnosed with amblyopia which basically describes the slight turn. The ophthalmologist prescribed patching for 2 hours daily until July. After patching for a few weeks the family started noticing how large, swelled up, and red Ashlynn's eye was getting on occasion. At times her eye would turn and stay "stuck" in the bottom lower corner of her eye. She would complain of pain and rub her eye for long periods of time. At times her eye would look so large that it appeared to not fit in her head.

In June of 2013 I took her back to the ophthalmologist who found what she then called a mass behind her eye. We were sent to a nearby children's hospital for a sedated MRI and CT scan.

Today we know

A. Ashlynn has 2 tumors, one on her optic nerve and one on her brain.
The tumor on her brain shows no signs of growth or danger. The tumor on her optic nerve shows signs of swelling, possible brain damage and blindness.
B. The tumor will be removed via chemotherapy or radiation.
C. Ashlynn is blind in her left eye.
D. Ashlynn was originally 6 months delayed at 1 year in age. She is now only 3 months delayed at the age of 31 months.
E. Ashlynn has 4 café au lait spots. One on her collar bone, one on her left hand side, one on her lower back, and one on the shoulder.
F. We will be going to the University of Michigan for genetics testing and Michigan State University for a Neuro-ophthalmologist.
G. Possible diagnosis is Neurofibromatosis Type 1. She has 4 of the most common symptoms at this time.



“Do not be afraid, for I am with you. Do not gaze about, for I am your God. I will fortify you. I will really help you. I will really keep fast hold of you with my right hand of righteousness.” (Isaiah 41:10)