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
Friday, March 26, 2010
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
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
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
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
Sunday, December 6, 2009
Miracles Do Happen!
I am going to share a story with all of you who have opened up your hearts to Caitlyn and our family. I finally feel at peace as her Mother. Even after getting the results of the tumor on Monday although I was overjoyed with happiness to hear it was benign…I still did not feel at peace. Part of me was still worried about the piece of tumor remaining and what that might mean for Caitlyn, part of me just still dealing with 5 months of emotion finally coming out, part of me overwhelmed by recovery. I can’t explain it I just still could not feel at ease.
I called one of the wonderful nurses in the ICU the next day to give our thanks and set up a time to drop some treats. She asked how Caitlyn was doing? I gave her a great report and she said well I have to tell you I am so happy because after 72 hours of what is considered to be normal brain swelling and surgery recovery were not improving. Caitlyn’s symptoms and struggle were no longer considered to be normal anymore. We felt such sorrow for your family that there would most likely be permanent damage. I knew that I said to the nurse, I could feel that after day 5 things were not looking good. However, I always stayed thankful that her heart was beating and she was with us! In that moment I knew that her miraculous turn around was a true miracle.
Her nurse then asked what the results of Caitlyn’s tumor were. I said benign and she started to cry. I was crying too, but was really touched by her tears. She then shared with me that prayers were defiantly answered. She said I also could not tell you that we were so sad because the neuro team had shared their disappointment with the nurses that Caitlyns tumor had every sign of cancer and very suspicious tissues. They felt such heartache for Caitlyn because they were pretty sure what road our family was headed down. That is why they moved us from the ICU to the cancer floor to prepare for the next step that next week. Instinctively as her mother I knew that. I am such a positive thinker but I had a bad feeling. With that being said…Miracles do happen. With so much prayer and positive thinking from sooooo many people 24 hours a day, situations can change. I am such a believer in the power of prayer and positive thinking. Never give up hope.
We of course are so overjoyed and thankful for Caitlyn’s recovery. Every day Caitlyn seems more and more back to her old self again. Yes, we will still have a road ahead with speech therapy, reading and writing, MRI's, and more but again that really is nothing compared to where we were 2 weeks ago or even 1 week ago for that matter. She continues to fight, and recover. Her strength amazes all of us and the way she expresses herself I am grateful for. I asked her if her head feels any different now? She said, “Yes Mama that pressure and that clicking time bomb in my head is deactivated.” For years that felt normal to her but now she realizes that wow my brain really feels better. Thank GOD! She will continue to get through this and what ever we have to do in the future we will conquer as well.
Thank you all for holding us up through this journey. We are so touched and grateful for all the wonderful human beings in our lives! BELIEVE and BE HOPEFUL because Miracles do happen!!!!
Love you all,
The Neely Family xo
I called one of the wonderful nurses in the ICU the next day to give our thanks and set up a time to drop some treats. She asked how Caitlyn was doing? I gave her a great report and she said well I have to tell you I am so happy because after 72 hours of what is considered to be normal brain swelling and surgery recovery were not improving. Caitlyn’s symptoms and struggle were no longer considered to be normal anymore. We felt such sorrow for your family that there would most likely be permanent damage. I knew that I said to the nurse, I could feel that after day 5 things were not looking good. However, I always stayed thankful that her heart was beating and she was with us! In that moment I knew that her miraculous turn around was a true miracle.
Her nurse then asked what the results of Caitlyn’s tumor were. I said benign and she started to cry. I was crying too, but was really touched by her tears. She then shared with me that prayers were defiantly answered. She said I also could not tell you that we were so sad because the neuro team had shared their disappointment with the nurses that Caitlyns tumor had every sign of cancer and very suspicious tissues. They felt such heartache for Caitlyn because they were pretty sure what road our family was headed down. That is why they moved us from the ICU to the cancer floor to prepare for the next step that next week. Instinctively as her mother I knew that. I am such a positive thinker but I had a bad feeling. With that being said…Miracles do happen. With so much prayer and positive thinking from sooooo many people 24 hours a day, situations can change. I am such a believer in the power of prayer and positive thinking. Never give up hope.
We of course are so overjoyed and thankful for Caitlyn’s recovery. Every day Caitlyn seems more and more back to her old self again. Yes, we will still have a road ahead with speech therapy, reading and writing, MRI's, and more but again that really is nothing compared to where we were 2 weeks ago or even 1 week ago for that matter. She continues to fight, and recover. Her strength amazes all of us and the way she expresses herself I am grateful for. I asked her if her head feels any different now? She said, “Yes Mama that pressure and that clicking time bomb in my head is deactivated.” For years that felt normal to her but now she realizes that wow my brain really feels better. Thank GOD! She will continue to get through this and what ever we have to do in the future we will conquer as well.
Thank you all for holding us up through this journey. We are so touched and grateful for all the wonderful human beings in our lives! BELIEVE and BE HOPEFUL because Miracles do happen!!!!
Love you all,
The Neely Family xo
Monday, November 30, 2009
HAPPY NEWS
Pathology Results
We are so thankful and relieved that the tumor is benign. AMEN! AMEN! AMEN! That was the first bit of positive news we had heard since July. For today we just want to feel happy and for a moment just breath. The worst for now is over the tumor is not cancer and they got most of it out. So lets celebrate those huge victories. Caitlyn will continue to conquer each day of healing ahead and I am so greatful that she gets a break. She was so strong today as they took out 37 stiches. GO CAITLYN! Thank you all for your prayers today.
Love,
Steph
Little sister Kayla is sitting next to me and this is what she wants to say: "We are so glad that our Caitlyn is here! I love my sissy soooooo much, and I missed snuggling with her while she was away." xo, Kayla
We are so thankful and relieved that the tumor is benign. AMEN! AMEN! AMEN! That was the first bit of positive news we had heard since July. For today we just want to feel happy and for a moment just breath. The worst for now is over the tumor is not cancer and they got most of it out. So lets celebrate those huge victories. Caitlyn will continue to conquer each day of healing ahead and I am so greatful that she gets a break. She was so strong today as they took out 37 stiches. GO CAITLYN! Thank you all for your prayers today.
Love,
Steph
Little sister Kayla is sitting next to me and this is what she wants to say: "We are so glad that our Caitlyn is here! I love my sissy soooooo much, and I missed snuggling with her while she was away." xo, Kayla
Thursday, November 26, 2009
THANKSGIVING MIRACLE
THANKKSGIVING MIRACLE
We are so blessed and beyond delighted to be HOME for Thanksgiving. This is a true miracle that was not expected. Caitlyn is such a fighter, and so strong that she has made an incredible turn around in the last 24 hours. I stayed up praying the entire night before, and our prayers were more than answered. She is medically stable and there is no better place for her to continue her healing than home with her loved ones, her own bed, and surrounded by all of the positive things that will help her continue to find strength, speech, and her memory. When her Dr. came in to check on her he was blown away by her overnight progress, and he asked her “Caitlyn, do you want to go home for Thanksgiving?” Caitlyn and I looked at each other, squeezed each other tight and cried our eyes out. I said baby theses are tears of joy, and she said I know Mama “happy” tears. All the Dr.’s and nurses were cheering to, and so proud of her for her fighting determination to conquer this battle. It was the biggest smile I had seen on her face in a long time.
We still have a long road ahead and this fight is not over yet but we need this time to rest, and regroup as a family. We need newly gained strength before we go down the next path. The last week was horrifying and much to personal to share but even in the worst moments no matter how awful or scary it all felt we/I always stayed strong, hopeful, thankful, and positive. She is with us today, her heart is beating, and we can kiss and hug her a 100 times a day. That is a true blessing!
We could not have made it through this last week with out all of your prayers and support. Everyday we are touched by your love. Prayer, and positive energy is so powerful and trust me we felt it! So today just know that we are so THANKFUL for all of you, and each other. Make sure you tell your loved ones today how much you appreciate them, and never stop being thankful and greatful for all things your life!
We love you all,
Stephanie, Matt, Caitlyn, Kayla, and Brayden Neely xoxo
P.S A very special thank you to Mikkel who walked every step of this path with our family, and did an amazing job of keeping you all informed. I would not leave Caitlyn’s side and we were all too emotional to talk about it so we love you Mikkel for being so strong and amazing!
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