Thursday, May 24, 2012

One Year Ago Today

These were written on the anniversary of Jaylie's diagnosis.

One year ago today, we found out Jaylie had a brain tumor. I clearly remember everything leading up to that life altering day. Easter was two days before, Grandma Jaylene was here, and we were having fun with her. Things were pretty normal and crazy in our household of 3 little kids. I would have never guessed then where we would be today. Our lives are filled with laughter, craziness, and love but with all new meaning. Each day is a blessing and a gift from God.

Last year, Jaylie was an energetic, intelligent, determined 5 year old who loved preschool and was beyond excited to go to Kindergarten.  She had been sick with colds almost constantly all fall and spring (which we attributed to going to preschool for the first time) and then got a virus 2 weeks before diagnosis. She had mouth sores and threw up a few times. She had been complaining of headaches and stomach aches in the mornings but only would mention it once and said it wasn't bad, then she would be fine. We didn't think much of it because she didn't complain a whole lot, she would just tell us once in the morning and it wasn't every morning either.  She also started having eye problems a couple weeks before diagnosis. At first it was really hard to notice, her one eye would slightly turn in, only sometimes. It took a while for Kip to even believe me because he never saw it and it was so slight. Then it got worse and it was the other eye. In the matter of 2 weeks, both of her eyes would turn in and she told us she was seeing double. I figured her headaches were from her bad eye sight. I took her to her pediatrician and she said it probably wasn't a big deal, but to get in to see an ophthalmologist. I tried to get her an appointment with the pediatric ophthalmologist but they couldn't get her in for months and I wanted to get it taken care of before Kindergarten started, so I took her to a regular ophthalmologist thinking he would refer her to a pediatric one once he found out what was wrong. We looked up her eye symptoms on the internet and figured she would need a patch, glasses or maybe eye surgery. I remember being devastated at those possibilities. Never once did we think all of her symptoms over that past month were related. Never once did the possibility that something was really wrong cross our minds.

Luckily my Mom went to the eye doctor appointment with me (I had Crew with me too because he was 9 months old and still nursing) and my mother in law stayed home with Breklyn. The doctor did some testing on her eyes and told us that she could see fine but something else was wrong with her eyes and she would need special glasses and that would hopefully fix the problem. He did more testing then at the very end, he dilated her eyes and looked behind them and saw swelling.  I remember him being very concerned and he started asking me all these questions about her, how often and bad her headaches were, and other symptoms. He told me to wait while he called the pediatric ophthalmologist and I knew already that that was not good. I know how busy doctors can be and waiting until he called one to see what she said was serious. He couldn't get a hold of her at first so we waited more. I remember wanting to cry and having to turn my head away or walk away when some tears fell, so Jaylie wouldn't see. My Mom was amazing and was comforting me. I was so glad she was there. When the Dr. called him back, he said she said what I thought she would say, to go directly from our office to Dell Children's Hospital for an MRI. I asked if we could go home first and then there later and he said that we needed to go right away and not make any stops. He said if it were his child he would get her there as soon as possible. I was freaked! He never once said tumor or brain or anything and I don't know much about how bodies work, but I knew that having to get an MRI could mean something was really wrong. I tried not to let my mind go there, tried not to think of what it could be. It took everything I had to not break down and cry in front of Jaylie. She was already so tired and I had promised we would go home after the eye appointment (we had gone to the pediatrician right before that too). She was tired and done for the day. She was upset and scared when I told her we had to take her down to the hospital for another test. Jaylie did not like doctors and freaked out when she had to get shots or a finger prick to check her blood, like screaming bloody murder freak out. I was still freaking out but trying not to show it. We got to the hospital and Kip met us there shortly. We waited a while and then they took her back for the MRI. They let Kip and I go back while they put the mask on her to put her out (she has to have anesthesia for the MRIs). Now I am used to seeing that, but back then it was horrible. She was freaking out and scared and when she started to fall asleep from breathing in the mask, her eyes rolled back and it was freaky looking. Kip and I were both balling. I don't even know how much time passed, but Jaylie was done and was with us. Then the ER doctor came into the room and asked to speak to just Kip and I and have my Mom and Dad leave. (By then my Dad was there) Then we heard the horrible words, "Your daughter has a brain tumor." In a split second, our lives were forever changed. I don't remember much after that, it is all kind of a blur. I remember crying and asking why, why Jaylie, why us. Thinking this is crazy and thinking what? A brain tumor? I had never heard of a child with a brain tumor. We were in shock. The doctor took us into a room and showed us the MRI. It was huge (about the size of a baseball) and was in her brain pressing on the left frontal lobe which was causing her vision to go crazy. We were admitted and she had brain surgery to remove the tumor a day and a half later. Everything is still kind of a blur to me.  I can't believe its been a year. At times it feels like it was just yesterday, that we just had Easter 2011. But then it also feels like she we have been dealing with this forever. Its hard to remember what life was like before the cancer, life is so different now, but a good different.

Today we celebrate Jaylie's life, and our blessings. Jaylie is the most excited I have probably ever seen her because we are leaving for Disney World today for a week! We didn't realize that we were leaving on the anniversary of her diagnosis, but now that it is here, we are thankful we get to go away and celebrate Jaylie and her life. We are honoring her and the incredible life lessons she has taught us. We are forever changed but her brain cancer has given our lives deeper meaning. With all the misery and pain that this beast has brought into our lives we try to focus on the beauty that still remains. It has taught us how fragile and glorious life is. Each day is a gift.  We are more grateful now as we embrace the shining sun, contagious laughter, love of family, fresh air, simple smiles, and the inspiring spirit of courageous pediatric cancer warriors! We do not know what the future holds, but we choose to focus on the beautiful life she radiates today.  Relapse fear can be unbearable and not knowing what our future holds is often paralyzing. Jaylie's first 3 month post treatment MRI is scheduled for May 8th, less than a week after we get back. We still struggle with adjusting to life after treatment. We are learning to live with the fear of relapse hanging over our head, living in 3 month increments (she gets an MRI every 3 months) We are also learning to live with the reminders of our prior life surrounding us. This is our journey and we are choosing to live it with faith, hope, and love. We can’t control what happens to us but we can choose how we react to it. We are choosing to focus on the joy of life, strength of faith, and flowing laughter of happiness around!

Thank you so much for all your prayers and support! I know I say it all the time, but I can't say it enough. Thinking back on this last year, tears are brought to my eyes thinking of all the MANY things everyone did for us. We will never forget the many acts of kindness that were shown to us over this last year. I wish we could express how grateful we are and will always be. Thank you!

Kip (Jaylie's dad) wrote this:

This is Kip by the way, and this is my very first blog post ever. I have had so much that I have wanted to say, but I hold things so very near and dear to my heart that it is hard for me to express certain things for others to hear or read. It has been one year since our sweet Jaylie was diagnosed with a brain tumor and I felt it was finally time to express some of my feelings on Jaylie's blog. It is hard to believe that it has been one year since our lives were changed forever when we learned our sweet little Jaylie had a brain tumor. There are no words to express that heartache we felt when we received that news and to see one of our children go through something so difficult. There are also no words to express the love we have felt towards Jaylie, as well as the countless number of people who have blessed Jaylie's life and our lives immeasurably. We feel such gratitude in our hearts for the blessings we have received this past year. Jaylie has faced brain surgery, port surgery, 31 radiation treatments, 6 rounds of chemotherapy, numerous pokes, blood transfusions, and tests over the past year. She has faced each hurdle head on without much complaint and has generally been a happy little girl! She has taught us so much. She has taught us a lot about patience, long suffering, hope and kindness. We have learned that in the face of our darkest days and our most difficult challenges, Heavenly Father does not leave His children alone. We truly see the Savior in her eyes each time we look at her, and we feel of His love and comfort each time she wraps her little arms around our necks. Each embrace is held just a little longer and mean even more than it used to.

Jaylie has returned to the relatively normal life on a 6 year old girl as she has been attending Kindergarten and going to dance and church. She continues to have an MRI every 3 months to make sure the cancer hasn't returned. So far so good. One of the toughest things through all of this is the not knowing. We continue to look forward with faith and rely heavily on our Heavenly Father and trust that He knows what is best for us. We cherish every day and count it as a miracle that we have our sweet Jaylie with us and we hope she knows how much we love her and thank her for making us better people. Breklyn and Crew love their big sister and cherish the time they share together. Thank you again to all those that we know and all those who we don't know for blessing Jaylie and our family. Our eyes fill with tears as we recollect on the countless acts of love and service that have been rendered and for all the prayers and faith offered up for Jaylie. We love you and we pray blessings upon your heads for what you have done. We cannot make it through this life alone, we need each other. That is one thing I have learned. We don't know why this has happened to Jaylie, but we do know Heavenly Father loves His children and He blesses us and comforts us and gives us strength. We are honored and consider ourselves blessed to be the parents of Jaylie and we want her to know how much we love her and draw strength from her courage, determination, faith and love.

It is our hope and faith that all will continue to be well and that Jaylie's cancer will never come back and that she can realize all of her hopes and dreams in this life. That we may also give back in some small way to others that have given so much to us as well as those who have fought, who are fighting, and those who will fight this difficult battle with cancer.

I want to say that over the past year we have felt a wide range of emotion from fear to faith and sadness to joy, but the greatest of all has been and is an overwhelming and indescribable love! Love for Jaylie, love you each other, love for others, and a love for each tender mercy of each day that we live! We cherish everyday we have with Jaylie and each other and we love our Heavenly Father and His son Jesus Christ for all that they have done for us and the miracles they have granted to us this past year. We don't know what the future holds, but we will face each day head on and we will do it together!


  1. Oh my word. I need to grab a tissue and blow my nose. I have been tearing up reading both of your reflections on this past year. I hope you know how much Jaylie and you both have taught US this past year. I feel like, with her diagnoses, Aaron and I have changed as parents b/c when we heard the news (and all the updates in between) it was so earth shattering. We, too, now squeeze our kids a little tighter and a little longer.

    On hard days over here, I just remember thinking they paled in comparison to the days you were experiencing---you've given us perspective and the desire to do more, love more, and BE more.

    We love your family and will always treasure our friendship with you. I wish we were closer in proximity so we could be there to see you all day in and day out, but what do you do? :) Sending our love to you guys.

    Thanks to BOTH of you (go Kip!) for sharing your thoughts and feelings. Love, melis

  2. p.s. you KNOW I love the new blog design background. So bright and fresh and fun! :)