Clinic Day

Ronan and I went off to the clinic this morning to do his usual Monday checks of his blood and platelet levels. Poor little guy is having bad tummy aches from the chemo last week. A lot of diarrhea and him saying his tummy hurts. I talked to “A” about this and she said it is a normal side effect from the chemo and to just watch him. She expects it to last most of the week. If it goes into next week, then we will have to do something about it. As for now, we just have to make sure he is staying hydrated. His counts are dropping, but still look o.k. We will expect them to continue to bottom out until the end of the week, then hopefully they will start to come back up. After the clinic, we went upstairs to meet with Dr. Jan who is one of the psychiatrists at the hospital. We only got to meet with her for about 10 minutes due to Ronan’s tummy hurting and him not wanting to be there. She is trying to help me work on some boundaries with Ronan.

We are still waiting to hear the finalized dates for New York. We should know in the next couple of days. It is going to be here before we know it. I am trying to mentally prepare for everything. As long as I have all my ducks in a row here, I should be fine.

Today, I spoke with Lin Sue Cooney from Channel 12 news. She has been playing phone tag with Woody since last week. They want to do a story on Ronan and our family and asked if they could come to our house to shoot tomorrow early evening. It was very last minute, but I am not going to turn down that opportunity. I will let you all know when it is going to air when I find out. I am assuming they will have to edit, etc…. Either way, I am honored. Channel 12 is the only local news channel I watch. Watch out world, this is just the beginning! Little Ronan is going to bring so much light and hope to this disease…. he will be the poster child for it. We have to find a cure. Everyday I hear of more and more babies not surviving. It is gut wrenching to read about and rips me to pieces. I try to stay away from stories like that, but it’s like a bad car accident…. sometimes you just have to look. As much as I try not to, it is a horrific reality check for me and keeps me focused on what we need to do to keep Ronan kicking cancer’s ass.

Tonight we played a lot of baseball outside. Ro has been running around like mad. There is no stopping my little guy. He runs circles around his 7-year-old brothers. I’ve never in my life seen a child like him before. He is so strong willed and determined. I dream about the day that he can just be carefree and happy and not have to live the life of going back and fourth to and from the hospital.

My sweet friend, Jules, brought over dinner tonight and it is always a treat to see her. We tried to catch up for a bit but it was busy around here with homework being done and Ronan wanting attention. We sat and ate dinner as a family, watched a little football, and Ronan fell asleep around 8:30. He didn’t nap today so he was tired tonight. After he fell asleep, I ran to the grocery store so I actually have food in my house. Ronan has been quite upset that there has been a lack of string cheese around here. We are all stocked up for a while. It’s amazing how much food 3 little guys go through. I seriously need to buy stock in Gatorade.

My friend, Gay, is coming over tomorrow to help me get ready for our channel 12 news story. She is going to help me put away all of our Halloween decorations and things like that. That women is a force to be reckoned with. I am SO lucky to have her as a friend. I hope someday after all of this is over to take a big trip with my very special girls to celebrate them and all they have done for me. A girls trip will definitely be in order and way overdue. We have so many plans for when we are done and over with this bullshit. So much of it is just going to consist of being together as much as possible and enjoying every little second of being healthy and free. Our lives will forever be changed, but we are going to change them for the better. This won’t get the best of our family<3 Nobody can take that away from us.

Last Friday night I went down to my beautiful friend and neighbor, Niki’s for a few cocktails and girl time. Tricia and Jen joined us too and I cannot tell you how good it felt to just be with them. We sat, talked, laughed, cried, and laughed some more. I swear this is the first time I have really laughed in months.  And I mean, laughed so hard that you can’t breathe and your stomach aches and hurts. It felt so good to feel something other than pain. I know I am surrounded by amazing friends when they can get me to feel that way and to just let everything go, even if it is just for a few hours. To my Niki, Tricia,and Jen…. thank you for being the beautiful souls that you are and the sisters I was meant to have. You have no idea how much that night meant to me. The only thing missing was our Lindsey and Marisa. <3 <3 I thought about them the whole night though and it felt like they were there in spirit. I love you all.

To all of you keeping up with Ronan and this blog, I think about you everyday and I am so thankful that you are touched by his story. It is going to be a long journey but it is going to be worth the ride. Sweet dreams, friends. Be thankful for what you have, who you are, and all the blessings you have in your life. You never know when something could take it all away<3<3 I pray that none of you ever have to experience what we are going through… we will walk this walk for you and hope you take the lessons along the way. 

“I soooo happy, mama”

Last night, we were able to leave the hospital. Ronan was fast asleep in his hospital bed and about 10:30 p.m. the nurse came into the room and said we could leave. I gathered up our things, managed to carry our bag, Ronan’s blankets, and pick up my baby boy and carry him to the car. He woke up just as we were waiting for the elevator, wrapped his arms around me and said, “I soooo happy, mama. I love you soooo much. I sooooo proud of you.” The tears welled up in my eyes and I felt like my heart was going to explode. It is things like that, that make all the bad parts of what we are going through, disappear.

Today, I am so thankful for so many different things, big and small. I am thankful that I have such a strong mother-in-law. Anyone who knows my mother-in-law, knows what an amazing person she is. But it is her strength as she is standing by our side through all of this that makes me love her, adore her, and look up to her more than I could have possibly imagined. I think she is possibly the strongest women I have ever met in my entire life.

I am thankful for my all of my dear friends. My Niki, who loves to leave me long voicemails, pouring her heart out to me. The fact that after a 5 minute phone conversation she can tell by the sound of my voice if I am having a weak moment or if I am doing o.k. And if she can tell that I am not doing well, she’ll call me back up to leave me a message or listen to me vent, cry, or not even talk at all. My Tricia, who is flying to NYC just to hold my hand through this. Who knows what it means to be a real friend, even in such an awful situation. She fills me with encouragement, hope and love. For the phone conversation I had with my Susie today, who doesn’t live here but because of our friendship and bond, it doesn’t make a difference in the love we have for each other. She is so understanding, supportive and knows just how to make me laugh when I need it most. My dear Kotalik family. They too will be in NYC with us and they have no idea how much that means to me. We are going to need all of the love and support we can get out there.

I am thankful for my strong husband, who refuses to give up this fight. Who questions the doctors every move, decision, and treatment option. For my amazing, strong twin boys. Their smiles and giggles light up my world. The way they treat Ronan, love Ronan, and take care of Ronan. They are so brave and beautiful. I love to see the way Ronan lights up as soon as they walk into a room. The bond the 3 of them have is like nothing I’ve ever seen before. Their souls are connected and it will forever stay that way.

I am thankful for an amazing lady named Dr. Adams. She is the doctor who is in charge of Ronan’s stem cell transplant and when we met with her yesterday, we were prepared for a fight with the things we are requesting for Ronan and how we are questioning everything. She could not have been more compassionate, loving, and open minded. She listened, stated her opinions without being too overbearing, and agreed to listen to what Dr. Kushner from Sloan Kettering had to say regarding Ronan’s stem cell harvest. I know from listening to her and looking into her eyes, that she wants nothing but best for Ronan. She is amazingly brilliant and it is so nice to completely trust someone with the life of your son. I trust her 110%. She has poured her entire life into something she believes in and is passionate about. I will forever have the utmost respect and love for her.

I am thankful for the little things too. The fact that we have a house, food on the table, and the means to get Ronan the best treatment possible. Thank god for insurance. I am thankful that tonight I am going to go out to enjoy my husband and friends to the fullest. After this past week in the hospital, I really need some time with Woody. Everyday, I find myself humbled and thankful for pretty much everything in my life. Some things are new, some are old, but all are important. The thing I am thankful for most though is another day looking into Ronan’s big blue eyes and another night sleeping with him snuggled up beside me. He is such a precious gift to our family. We as a family will never be ungrateful for the petty things in life again. Ronan has put everything in perspective. What a big job for such a little boy.

P.S. Some have you have asked what we are going to NYC for. We are going there to have Dr. La Qualia, from Sloan Kettering, resect the tumor that is in Ronan’s abdomen. He is one of the  very top doctors at doing this and has been given the nickname of “The surgeon of the Angels.” They say he has a gift; a magic touch. We only want the very best operating on Ronan. He is our best shot at saving our baby and getting all of the Neuroblastoma out of his body. He knows what he is doing, knows what to look for, and has been recommended by everyone we have talked to. So NYC, here we come. <3<3<3

Have a beautiful weekend my beautiful friends.