God's Plan

Watching someone you love battle cancer has got to be one of the hardest things to go through. I've lost a daughter, mother, and father. My mom and dad's passing were both unexpected and very sudden. There was no time to say goodbye. I didn't have to watch them live their last moments. It was extremely hard for me to deal with. I look back with regrets and sadness that they were taken from us too soon and too suddenly. With AJ, it's so different. I feel like watching him fight for his life is so much harder than losing my parents and our daughter. I didn't have to watch them fight to live. They were just gone. Watching my baby brother fight with everything he has and watch him slowly lose this battle is killing me. I hate that every single time I see him he looks worse and he is in so much more pain. It's like a piece of my heart and soul is being ripped away every single day. I don't know how to cope with this. I don't know what to say to him. So, I hold his hand and tell him I love him. I don't know what else to do. I've never felt so lost in my entire life. Watching him lay in his bed and wince from pain and cry out because he hurts all over is worse than I could have imagined. I knew when they told us that he had weeks to live that it was going to be hard. I knew it was going to take everything in me to deal with this. I knew it was going to hurt. I just never knew it would hurt this much. It consumes me. It is all I can think about. I wake up and he's the first thing on my mind. I lay in bed and he is the thought that drifts me off to sleep. Thoughts of him playing with his nephews and reading to them. Thoughts of him as a baby laughing. Thoughts of him celebrating birthdays with us. Thoughts of him standing in our wedding so proud and so happy that Brett and I were finally getting married. Thoughts of him playing in our mom's office while she worked because she didn't want to send him to daycare. She wanted him with her as much as possible. Thoughts of so many memories from the last 18 years. I hate that he is going through this. I want to help him, but I can't. I want to make him feel better. I want to take some of the pain for him because I can't stand to see him in so much pain. I wish things could be different. Why him? I feel like I ask God that question daily. I don't understand how someone so full of life and so loving should have to go through the things he's going through. It doesn't make sense and it's not fair. He is so loved by everyone who knows him. He is such an awesome person. I have always said that I hope our kids grow up to be just like him. He was never the typical teenage boy. He was so loving and so sweet. Sure he could be a pain in the ass, but that's one of the things we love about him. I love his sense of humor. His laugh. His smile. The way he would sleep and have his head cocked all the way back in what looked like the most uncomfortable position ever. The way he would grab one of the kids and snuggle with them on the couch. They adore him. They think he is their Superman. Every weekend they would ask if Uncle AJ was coming over. That was what we looked forward to every week. Our weekends with him. It didn't matter of we were sitting home watching movies and playing video games or heading out for a day at the beach to fish and swim. We loved having him here to share those moments with our family. It's so hard to accept the fact that those moments are slipping away from us. I have no regrets as far as my relationship with him because I have always told him how much I love him. He knows how much he means to us. He knows that he is and always will be a part of our little family. I don't want him to leave us. It doesn't feel right. It's not his time! He's still so young and we have so many more trips to the zoo that he should be at! How do you say goodbye to one of your best friends? How? I have been thinking about this for the last two weeks. I don't know what to say to him other than, "i love you". I pray to God every single day. I ask him to take this from AJ. To let him live his life. To let him graduate high school, go to college, get married, and have babies. I know that God has a plan. I don't know what that plan is, but I know there is one. AJ was put on this Earth and in our lives for a reason. He was put into our boys' lives for a reason. To show them love. They are so blessed to have had him in their lives. They know without a doubt that Uncle AJ would be there for them and love them no matter what. That is unconditional love! AJ and I had a talk 2 weeks ago and he told me, "Nichole, don't worry about me. God has a plan. If he needs me to be with him, I'm ok with that.". I need to listen to AJ and accept God's plan. As Brett says, "AJ is so special and so amazing that God wants him to be with him." As hard as it is, I need to accept that and know that AJ will be somewhere so much better than the place we are now. A place where there is no pain and sadness. A place where he can play Lacrosse and Hockey while our mom looks on smiling because they have finally been reunited.

I just want everything to go back to normal...

If you would have told me 4.5 years ago that I would be watching my baby brother fight for his life, I never would have believed you. Yet here we are. I sit and watch my baby brother fight every single time I see him. He is so strong and has so much to fight for. He has a family who loves him so much and three nephews who look at him like he is Superman. How do I explain to them that he is sick and might not get better? How do I tell them that their uncle who is here for everything they do is fighting just to live? How? J asks me daily when his uncle AJ will feel better. They want to know where he is every weekend. Why he isn't here. How do I tell them that he's fighting cancer and is too sick to come spend the night? How do I tell them that he may never stay the night again? I don't have the answers because I don't know either.

He is here for everything. We take him with us on nearly all of our family trips. He comes for every birthday and is usually the last one to leave. Most of the time he just stays the night and we watch movies and eat junk food.

I hate seeing him this way. I hate seeing him crying out in pain and begging me to help him. I hate watching him lose more and more weight. It's tearing my heart into pieces. He is such a happy and energetic person. Seeing him laying in bed in so much pain that he's not even moving is heartbreaking.

Why him? Why AJ? Why one of the most amazing people I know? I don't understand why God feels like I can handle all of this. I don't understand how much pain and heartache one family can go through. I feel so lost and so helpless. I just want him to feel better. I want AJ back. The AJ who gives me shit every time I see him. The AJ who is so happy to see his nephews. The AJ who picks on my husband like he is his best friend. I want him back. I don't want his joy and happiness to be stolen from him at 18. I don't want him to be fighting for his life at 18. I just want normal back. I want AJ back. I am so terrified at the thought of losing him. I can't picture my life without him in it. It's not fair.

F**k Cancer

He's 17 years old. He's a senior in high school, He plays Lacrosse and loves hanging out with his friends. He loves drawing. He's my heart. He lights up our lives and makes my weekends brighter. He's my friend. He's my brother. He's fighting cancer.
Four years ago we were preparing to have our second son. Just days before my scheduled c-section our world was turned upside down. My baby brother had cancer. They had removed his thyroid hoping it would help. A couple of years later, it was another surgery. Then another. Now here we are four years later and he's still fighting. This time it's bladder cancer and prostate cancer. He's 17! It's so surreal. It's not fair. He's a kid. He's in high school. He should be worried about girls and grades. Not cancer. If I could take this from him, I would do it in a heart beat. He has so much life in him. He's a fighter. He's the most amazing 17 year old I have ever met. Through all of this, he keeps a brave face and moves on. I know he's scared, but he doesn't show it. His strength give me strength. He's showing me that he WILL fight this. He has cancer. Cancer doesn't have him! He's the bravest person I know. I can't imagine my life without him. I love him like he's one of mine. Fuck cancer. Cancer will not take him from me. CANCER WILL NOT TAKE HIM FROM ME!

January 23rd, 2011

We were able to visit with Myles today. He seems to be doing great! He's gained again and is currently weighing in at 3lbs 11ozs. He's tolerating his feedings pretty well. He's spit up a few times, but the doctors aren't too worried because he's still gaining.

You gotta take the good with the bad...

So, I guess you have to take the good with the bad. Myles was put back on the nasal cannula today. I was at Target with Jakob shopping for some new clothes for Myles... I came home and Brett told me that the NICU had called because Myles was having a hard time breathing. They put him back on the nasal cannula and he's been fine since. It scares me to know that he's still a fragile little person who should still be in my belly. We also got some good news with the bad. Myles has finally passed his birth weight!! He started out at 3lbs 8ozs and has been losing since he was born. The nurses and doctors assured us that this is normal. At his lowest, he was 3lbs 2ozs. This morning the nurse weighed him and he was 3lbs 5ozs. Tonight she weighed him again and he is now at 3lbs 9ozs!! He's finally bigger than he was at birth! Now we just have to keep stacking the pounds on him. He's just a tiny little guy. The more he gains, the better! It was nice to get some good news. I was getting a little concerned about his losing weight. Now we can celebrate because he is gaining!

The start of week two

We were finally able to hold him!The day Myles turned a week old, I was able to hold him in my arms. It was the most amazing feeling. I couldn't help but just cry and stare at this beautiful little person in my arms. He is so tiny! I don't think I realized how tiny he is until I was holding him. He's doing so well. He's taking his feedings in like a champ! They've upped him to 19ccs of breast milk and so far he's tolerating them really well. It hurts to have to leave him there every day, but I know he's getting the care he needs right now.

Myles' 1st week in the NICU

January 12th 2011, I gave birth to a beautiful little boy. After 2 days of laying in a hospital bed being monitored, Myles' HB started to drop here and there. The doctor decided that getting him out ASAP was the best thing to do. After pulling him out, the doctor realized that the umbilical cord was wrapped around his body a few times. He was 3lbs 8ozs 15.5 inches long. He came into the world at 30 weeks screaming clear as day. He scored a 9/9 on his APGAR test and has done awesome since. He started his life on the CPAP but quickly learned how to pull that out. He moved on to the nasal cannula after just a few days. Finally at 5 days old, he had the cannula removed. He also started tube feeding. One his 3rd day of life, he was taking in 2ccs of breast milk. Now at a week old, he is up to 19ccs of breast milk. He is still on the bililight due to slight jaundice, but otherwise, he is doing great!
We had a small scare when he was 4 days old. I walked into the nursery and saw a yellow sign attatched to his incubator. After asking the nurse, we learned that his white blood cell count was low. That could be a sign of infection so we were told we couldn't hold him yet or even touch him. I'm glad they found out when they did because the nurse had told us earlier in the day that we could hold him. Now I'm glad that we were told as soon as we got there because I really don't want to risk exposing him to germs if he doesn't need to be. The following day, the white blood cell count was normal and the sign was off of the incubator!
Myles continues to get stronger and stronger with each passing day.