Friday, April 26, 2013

2 Years


Two years ago today, after a long day of doctors appointments, we found out our precious five year old daughter had a huge tumor in her brain.  We were told she needed surgery right away and she was being admitted.  I went numb, felt so many different emotions and the rest of that night is a blur. How could my perfect, healthy little girl have a brain tumor? It was crazy. I never heard of people having brain tumors; let alone a 5 year old, MY 5 year old. I still remember the day so well, the day that our lives forever changed in an instant, the day I will remember forever.  

I honestly can not believe it has been 2 years. Kip and I were talking about it a couple days ago and it seems unreal.  How has it been 2 years?! We can remember it like it was yesterday.   Finding out about the tumor, her surgery, recovery and then finding out it was a rare, very aggressive form of cancer. Even writing about it makes me sick to my stomach. We try not to think of those first weeks, its just so hard. And it makes me feel so badly for other families going through a new diagnosis of cancer. Its something no one should have to go through, yet so many do. It is truly heartbreaking.

Looking back over the last two years though, the things we try and remember more so than anything else, are the many many blessings we were given (and still are given). It was amazing and overwhelming the amount of love and service we received from so many.  We were truly blessed and being carried and held up by servants and angels of our loving Heavenly Father. In that darkest, hardest time of our lives, there was so much love, service, peace, more so than Kip or I had ever felt in our lives. It was remarkable really, so many tender mercies, so many miracles. Heavenly Father knew what we needed to get through it.  We will forever remember and be grateful to everyone for their prayers, texts, messages, emails, hours of service, meals, watching kids, mowing the yard, donating money, giving gifts, cleaning, visiting us and so much more. It was so hard to accept all the help, it was SO hard, but it was just what we needed and really did help so much more than anyone will ever know.  We are so grateful.

Jaylie has done amazing well with all she has been through these last 2 years.  The fact that she was able to lay so still for her radiation treatments to her brain and spine where she was bolted onto the table with a mask, is a miracle by itself. I am still amazed that she did that. She did so well getting poked all the time and having millions of doctors appointments. She just found the good in every situation. She was always so positive and happy. She did really well through her chemo treatments and even though her body had no immune system, she never got sick, and no one else in the family did either. All of her MRI’s since after surgery have come back clear, no sign of cancer. She is doing so well now and most people seeing her now would never even know she had cancer and went though radiation and chemo. We can tell, a lot has changed, physically, emotionally and mentally, but she is doing much better than we expected. Huge miracle and blessing for sure.        

It has been a little over a year that Jaylie has been off treatment. She got her port out a month or so ago! So we only go to the clinic every 3 months now. Jaylie did great getting her port out and even went to her hip hop dance class the next day J  She is loving school and loves being with her friends at school. She is doing really well and loves to learn. The highlight of her week is Thursdays when she has her hip hop class and the weekends when she gets to spend time with Dad and the whole family. She loves crafts and any kind of art. She loves music and having dance parties. She is saving up her money to get her own ipod so she can put her music on it and be able to have her own apps on it. She loves going on walks and collecting thing outside. She still loves Hello Kitty and all her build a bears and stuffed animals.  Jaylie is the sweetest thing on Earth. She has such a big heart and always sees the good in people and life. 

She had an endocrine appointment last week. The radiation she had can cause damage in a lot of ways, one of which is to the pituitary gland and hypothalamus, both which regulate hormones and such. Her thyroid doesn’t work and her growth hormone levels are really low. She hasn’t grown much since being off treatment unfortunately. She is growing a tiny tiny bit but it is much slower than normal growth in kids her age. She has gone from being the tallest of all her friends before diagnosis, to being one of the shortest. It is weird for me to see, because she was always quite a bit taller than everyone else, boys included.  Her endocrinologist will probably put her on growth hormone next year. She has to be 2 years out from end of treatment before they will give it to her, so it will be a while. Hopefully she will grow a little on her own still.  The radiation she had is brutal.  There are other things we are seeing caused by the radiation and chemo, but all in all, she is doing amazing!!

She has an MRI a week from today, next Friday, May 3rd. Her 2 year from diagnosis MRI.  Its crazy. We didn’t know if she would even make it to this milestone. It is pretty huge and such a blessing. Scanxiety is more than setting in, I seem to get more anxious and nervous the further out she gets, which is odd and unexpected. Kip kind of feels the same way. We are just trying to have faith that all will work out and she will be ok. We will get results the Tuesday after her MRI, on May 7th.   She will continue to have MRI’s every 3 months until November at least. Hopefully then, if all looks good, they will move her to every 6 months. Please pray for Jaylie, that her MRI will show no sign of cancer. We appreciate the prayers more than you know, they really work!                                                                        
 Jaylie and lil sis Breklyn on Easter Sunday

                                                          Day of surgery after it the port was taken out!

                       Picture of Jaylies port a week after surgery, she got an itchy rash, luckily it wasn't anything bad with her surgery.