Friday, March 26, 2010

Successful Surgery!

Caitlyn's surgery went very well yesterday! The doctor was able to drain the cyst and remove the remaining part of the tumor. The cyst actually helped the doctor to be able to get to the tumor much easier than last time. Caitlyn is doing very good and is recovering in the ICU.

The family is so appreciative of all your prayers and positive thoughts! Again, we have been blessed with another miracle and they could not be happier or more thankful!

Love,

Mikkel

Thursday, March 18, 2010

Second Brain Surgery Scheduled

To our Beloved Friends and Family,

Well, I am not sure where to start. I think I am in a bit of shock, so heartbroken, and every other emotion that you feel as a parent when one of your children is ill. The first thought that always comes to mind is take me, but please let my precious children be healthy. Unfortunately that is not an option given to us as parents. I cant put a band aid on it, and I really have no control other than giving all the comfort, love, and support that one has to give.

So today Caitlyn's MRI showed very bad news for her. A cyst is taking over the left side of her brain. This "balloon" of fluid is about the size of a lemon, maybe even a bit bigger. Truly unbelievable that such a small place in her brain can hold such a large amount of blocked fluid. This of course explains the large amount of headaches, exhaustion, loss of concentration, and tummy aches that she has been feeling again. Her Dr. was truly shocked that she is even walking or talking at this point. That's our Caitlyn though, tough as nails and surrounded by angels even in the worst case scenarios. In addition to that the remaining tumor has reattached itself to a new blood supply which is feeding it to grow again. The tumor is in what they call a "no" zone. Very deep into a part of the brain they do not like to enter, that is why he left it the first time (trying to save the vision in her left eye) and we were going to try radiation. Now we have no other options but to go in and fix both problems with open brain surgery just like we did last time but this one even a bit more intense. So with that being said Caitlyn will under go another very risky open brain surgery next Thursday. She of course was devastated to hear the outcome as we all were. I of course said, "Caitlyn we will conquer this! Together as a family, we can get through anything!" We can not loose our hope for round 2 but definitely searching for new strength. We are terrified again even more so than before, and having major flashbacks of how awful recovery was last time for her. Her Dr. always tells us, let her have a blast the week before surgery. If something happens, you know what to do! So that is what we do to try and cope. Every day becomes a party and we cherish every moment. Please keep Caitlyn in your prayers and positive thoughts. We know you all always have, and we thank you for your continues support since July 2009.

Love to you all,

Stephanie and the entire Neely Bunch

Wednesday, March 10, 2010

Keeping the Hope Alive

Hello friends and family,


It has been a while since we have said hello. As you all know we are trying to survive our busy lives just like all of you. Between work, raising 3 amazing children, many appointments, homework, etc, etc, I slipped my disc, and pinched my nerve in my left leg. No fun, major pain, and then I remind myself Caitlyn conquered brain surgery, I can handle this! Caitlyn just turned 11. WOW! Yes we all cried tears of joy.

Here is a small update. This is a big week for us. Today we had another MRI and Friday we see her neurologist. About a month ago her most recent MRI showed a cist had grown on top of the last bit of tumor that remains. We have not shared this news because there is so much we still do not know and will not know until Friday. We also have been in a bit of shock and trying to find continued strength and courage to the battle that we may be fighting all over again. We find out all the details on Friday but a cist can only be surgically removed. Most likely this means the one word we never wanted to hear again which is surgery. We will keep you all updated as we know more, but please keep her in your prayers and positive thoughts coming our way.

Much love to you all,

Stephanie Neely xo

Saturday, January 23, 2010

Happy New Year!

Happy New Year to all of our friends and family! A huge thank you to all of you that made our Christmas such a special event! For us as a family it was a day of joy and so much laughter! We didn’t think or talk about tumors, finances…nothing serious! One of the gifts was a Wii. We played for hours as a family. It is so much more than a game. Through the Wii, Caitlyn was starting to recognize letters, and dealing with the whole eye-hand issue. After hours of playing….she became the top bowler of the family! Her record still stands! Her grandpa and dad have come close, but she is unbeatable! (miracle after miracle). Donna Griffith along with the water polo team at Palm Desert High did a fabulous job of coordinating Christmas. She had dinner delivered, which was fabulous! The tree was beautiful surrounded with a bounty of gorgeous presents! Thank you hardly seems enough. Other groups and individuals also sent gifts for the children. It is so appreciated by all of us!

Caitlyn at this point is back at school and very happy to be there. Her mom could better address lingering issues, but what we all see is that she is reclaiming more of herself each day. We are starting to see more of “our Caitlyn.” A huge thanks to Mr. McLaughlin, the principal at Reagan. Not only has he been instrumental organizing fundraisers and activities on Caitlyn’s behalf, he truly is her advocate. From day one (along with his precious staff) Caitlyn has felt safe and cared for. He made sure she would receive the necessary services to expedite her recovery in learning and speech. What a blessing to have her at Regan Elementary!

Caitlyn faces another MRI next week which will give some more answers. She is not looking forward to that at all, but it is necessary. We continue to pray that we will hear good news so that Caitlyn can put this behind her as best she can.

The blog has been quiet, not because we ever forgot about any of you or that things were back to normal, but rather we are running at top speed. Stephanie went back to work the week before Christmas and the rest of us are all working and/or attending school. We have a huge calendar to keep track of all the logistics: like who is picking up kids etc. In addition to that, the flu hit the family big time after Christmas. I think we are on round 3 for Brayden. No one in the family was spared (even aunties and grandparents) and that was rather traumatic for Caitlyn as well.

As you see, we are full speed ahead! We count our blessings each day. We have Caitlyn home and she is progressing. You will always be in our thoughts and prayers. As hard as this journey is, we can’t imagine what it would be like to take one step without YOU! Your prayers, cards, donations have filled our hearts with hope. On days when we felt total despair, you pulled us up! Thank you!

With love and gratitude,
The Graniks and Neelys