Don’t stop believing

Ro baby. I looked for you all day. I was so sure you were going to wake me up this morning, as you have done every morning for the past almost 4 years. I woke up with a big, strange person in our bed. It was your daddy. I kept waiting for you to pop out in between us, but you never came. I got up, showered, and got dressed. I waited for you to come in and ask for me to put on some of my sparkly lip gloss that you liked to cover your face in. I waited for you to ask what it was that I was putting on my eyes as I applied my mascara. I waited for you to ask me to give your star wars guys a bath and for me to give you my hairdryer so you could blow dry them. You never came.

Quinn needed a haircut today. I got in the car and drove him to the barber. I looked for you in my rear view mirror, sitting back in your carseat. You weren’t there. Somehow, I got Quinny safely to get his haircut. I’m not sure I should have been driving today as everything is really foggy. My friend, Melissa came and sat with me. I told her how I needed to go to Nordstrom to return some of your Paul Frank underwear that came in the mail and to get Quinn and Liam some shoes for your service on Sunday. She came with me. She helped me get the sizes for your brothers shoes as my mind would not focus today. Everything is a mess. Everything except me. I’m o.k. Remember how a couple of days ago, I was hovering over you and I was crying?? You looked at me and said, “Mom, stop being sad.” You would be proud of me. I’m not sad yet. I’m trying so hard to make you proud. I am scared for the day when all of this hits me and I realize you are really gone. As of now, this all just feels like make believe. I still feel like this is just a trick or a nightmare that I cannot wake up from. Your daddy has been crying a lot. I wonder if something is wrong with me as I am not grieving yet. I’m numb to everything around me.

After I dropped Quinn off at home, I went to my hair appointment. I sat in the chair and was quiet for the most part. Katrina, who shaved your little head, gave me a big hug. She let me sit and just be with my own thoughts but we talked about you for a little bit. I got teary eyed, but did not cry. After my hair appointment, I went to see Dr. Maze. I brought him a coffee in your honor; but it was from A.J.’s and not Starbucks like we usually used to bring to him. We sat in his office for a long time. He has a picture of you up in the middle of his bulletin board. He misses you. I didn’t cry when I sat with him either. I never seem to, as you know he always has given me strength. He has become one of my best friends. Even though he is just a really old man 😉 We laugh about the day that I will push him around in his wheelchair. He told me his mum will look after you now. I had a dream about him saying this to me. That his mom would look after you now. I had asked him this in real life in a text message and he didn’t answer me back. But I dreamt he did and that is what he told me. I asked him today if I dreamed that or if he really had said it. He said that I had dreamed it, but that he knew she would be looking after you. That gave me peace because he loves her so much. I know she will take good care of you until I see you again.

After I left Dr. Maze’s office, I came home and helped your brothers get ready for their baseball game. They played so well and it was such a beautiful night. I kept looking for you on the playground, but I couldn’t find you. Then I remembered, you are gone. Since you’ve been gone something funny has happened everyday. That song by Journey, “Don’t stop believing,” has been playing in the background each day. Tonight, I heard it at the ballpark and it stopped me dead in my tracks. 3 days in a row I’ve heard that song. So weird. I know it’s you. It’s one of your little signs. I will never stop believing in you. At the ballpark, your brothers played an amazing game. They are happy, but they miss you a lot. Quinn was having trouble hitting the ball at one point and I asked for you to help him. I said, “Come on, Ro. Help your brother out.” You did. He hit it out of the park. Your dad and I stood together and talked about you and how you were always so proud and always held your chin up high. You achieved a lifetime of dignity in your 4 years of life that most people never achieve. Even when you died, your chin was held high. You are such an amazing little boy, Ronan. I am so honored I am your mama. I’ll never forget some of your last words to me. “Mama.” Me: “Yes, baby.” You: “I love you.” Me: ” I love you more, Ro.”

Tonight, we rode our bikes over to Uncle Jay’s house so Liam and Quinn could go swimming. I looked for you on your little bike next to me, but you weren’t there. Liam and Quinn swam in the pool and played basketball. I heard them laugh and looked up at the moon to tell you that I love you to the moon and back. I wish you could have been with us. Quinn took big fall on his bike on our way home. His little foot was so bloody and scraped up. We got him home and I thought of you and how brave you have always been. I tried to channel some of your braveness into Quinn. We got home and I did my first load of laundry since you’ve been gone. It was so weird. I still cannot go into your bedroom. I’m saving it for that special time when I know I am ready to fully succumb to this nightmare. I will use your room as the place where I can fully breakdown; when it is my time.

I’ll never forget how you looked hours before you passed. I could have sworn I saw your little eyes trying to form tears. I know it was because you were so sad to leave us. I hate thinking of you sad. I’m trying my hardest to block this memory out and think of you at your happiest times. The times that you were with us and such a carefree, healthy little boy. These memories will keep my heart warm for the rest of my life, baby.

I have to go now. Fernanda and Stacy are here and we are going to go over the way we are honoring you on Sunday. Even though we will honor you for the rest of our lives, baby. I love you, Ro. See you in my dreams.

xoxo

We’re not married…. we’re still dating;)

I wish I could tell you tonight that we have our answer. But I can’t. Woody and I both left the house on the same page this morning, thinking we knew which approach we were going to take. That all changed after meeting with Dr. Adams, the head of Stem Cell Transplant at PCH. I should have known the answer was not going to be so easy. Woody, Fernanda, and a I sat across from Dr. Adams and Woody did all of the talking. Fernanda sat and wrote notes and held my hand; I sat, listened, absorbed, and cried. At one point I looked up and told everyone I was just trying to do my best not to throw up everywhere. Dr. Adams looked at me and said she didn’t blame me, she was devistated that she had to be having this conversation with us. But, she said she still feels like Ronan can be cured…it’s just going to take a little more work than we would have liked. She said we have a ton of options available but unfortunately, nobody knows the right answer. The decision we are going to have to make is going to have to be based on all the data we collect and a gut feeling. Those were her words exactly. I told her I’d be gut feeling, and Woody could be the data:) Sounds like a perfect match to me. What Dr. Adams would like to see is us do 2 more rounds of a different type of  chemo here, than rescan Ronan and make a decision after that. She does not want us to jump head first into anything. Woody and I both agreed that this sounded like a good idea to us as long as it won’t close any doors as far as other options go. We are waiting to hear back from Dr. Kusher at Sloan to see if he is o.k. with this. We don’t see how this would hurt Ronan at all, if anything everyone seems to think we can get rid of some more of his disease this way.

There are not many people in the world that I would trust with the life of my baby, but Dr. Adams is one of them. I don’t have a super personal relationship with her for obvious reasons, but I don’t need one to know that she is a very special woman. She is brilliant beyond belief, compassionate, open minded, and has dedicated her entire life to this. She truly cares about each and everyone of her patients. She has this amazing aura around her and I feel it whenever I’m in her presence. After we left her office, Fernanda and I went out into the main waiting room to take care of some business. Fernanda looked at me and said, “I still have goosebumps after being in that room with that woman.” Fernanda felt it too. This woman is a gift to us and I want to keep her involved in Ronan’s care for as long as possible.  I fully trust her and respect her opinion so much. She wants to give Ronan the best shot possible is willing to do whatever she can. She was very hopeful because Ronan has responded so well and as I said before, she just thinks he needs a little something extra. Staying here and starting chemo would give us more time to figure out our exact plan. I hate just to jump right into anything if we can take baby steps instead to really make sure what we are doing is right. Fernanda had Dr. Eshun’s assistant get all of Ronan’s scans out to about 6 different doctors. We will take all of the opinions we can get right now. This is not the end of the road my friends, not even close. This is the beginning of a new path we are going to take to get Ronan well. I am embracing it with open arms and know it will be the right decision, when the decision is made. I trust in the higher power who is in charge of this…..whomever that may be as I believe there are many forces behind getting Ronan well.

Once again I am in awe of my husband. I sat today and watched him fire out questions to Dr. Adams that I think she was even surprised to hear him ask. He knew the names of all of the studies, the side effects, what things would open doors and what would shut doors. It is pretty amazing when you can watch someone like Dr. Adams be so impressed with a father and his wealth of knowledge. I wish I could have been of more help, but I cannot seem to detach myself from the emotional side of all of this. I don’t know what I would do without Woody. I said to Tricia yesterday, “Could you imagine if I were married to a moron and going through all of this?” There is no way I could get though it. I am so thankful I am married to such a brilliant man. I love you, Woo <3

We still know Ronan is going to beat this but as I said before, he is going to do it his way. We will get this figured out but it is going to take a little bit of time. Nothing is set in stone and I loved it today when Fernanda said in her beautiful accent, “Honey, I love that you’re not married to one idea, your still dating!” I’ll never forget how her words made me feel today. I’ll never forget her sitting in the clinic with me and seeing her tears over something I had shown her that I carry with me everywhere I go…. her Christmas card picture with all of her 5 beautiful children on it. I feel like it brings me luck and it will help to guide me. It’s the little things that mean so much to me now. Whether it be the Claude necklace I always carry with me, my four leaf clover necklace that I never take off, Pam’s bracelet that she gave me that I also never take off, or Fernanda’s Christmas card. All of those things bring me peace and although they seem little and insignificant, they all mean the world to me.

Today was a long day to say the least. I have taken my sleepy medicine so I can actually sleep tonight. If I miss a dose, sleep does not happen. I’m o.k. with this. It won’t be forever, and I know how important it is for me to get some real sleep. My dreams are still intense and sometimes they are good, and sometimes they are bad. Working on tricking my mind into making my dreams as peaceful as possible.

Goodnight my sleepy friends. Goodnight Moon. Goodnight my sweet baby Ro, Liam, Quinn and Woo. Goodnight my Fernanda… I will meet you in my dreams for cocktails, on a beach, far away from all of this. I love you.

The dawn is breaking
A light shining through
You’re barely waking
And I’m tangled up in you
Yeah

I’m open, you’re closed
Where I follow, you’ll go
I worry I won’t see your face
Light up again

Even the best fall down sometimes
Even the wrong words seem to rhyme
Out of the doubt that fills my mind
I somehow find
You and I collide

I’m quiet you know
You make a frist impression
I’ve found I’m scared to know I’m always on your mind

Even the best fall down sometimes
Even the stars refuse to shine
Out of the back you fall in time
I somehow find
You and I collide

Even the best fall down sometimes
Even the wrong words seem to ryhme
Out of the doubt that fills your mind
You finally find
You and I collide

You finally find
You and I collide
You finally find
You and I collide


Why hello beautiful boy

Today was actually a wonderful day. Wonderful as in we only had to go to the clinic for the standard blood tests and to have Ronan’s broviac dressing changed. We got to see our favorite nurse, Sharon, which is always a treat. Ronan told me today that she is his favorite person to see at the clinic. So sweet he is. This morning he woke me up at 7 a.m. on the dot demanding scrambled eggs, pronto! I tried my best to put him off as I was so cozy in bed but he wasn’t having it. I got up, made him his eggs, and got Quinn ready for school. Liam is still at Mimi and Papa’s due to not feeling well. After Quinny got off to school, I spent the rest of the morning cooking for Ronan and making him food about every half an hour. He is constantly hungry which is a very good thing, but leaves me exhausted and I don’t get much else done around the house. We headed out to PCH and had a chance to talk to Dr. Eshun about Ronan’s scans. He overall seemed pleased with everything but does not want to give us any concrete statistics until we get the MIBG scan done. This will be the most telling of all of the scans. Thursday cannot get here soon enough. After the clinic visit, Ronan was begging me to take him to Chelsea’s Kitchen for lunch. We met Woody there and watched as Ronan chowed down some of Woody’s French Dip, french fries, and his Grilled Cheese Sandwich. I had my favorite, the Ahi Tuna Tacos. Most amazing things ever. I could never get tired of that place. Ronan was happy to be out with his mom and dad and it was a gorgeous day spent with a gorgeous boy who is feeling wonderful. You have no idea what it does to my heart to see him so happy and carefree. Forget the fact that his life has been overtaken by cancer; today none of that mattered. Quinn came home from school and cousin Luke came over for a couple hours to play. The boys played baseball outside and ran around like crazy. I felt like a normal mom for a minute… making them after school snacks, helping with homework, doing laundry, and getting to hear all about Quinn and Luke’s day at school. It’s days like today that the cancer cloud that hangs over my head disappears for just a short amount of time. It is the most wonderful feeling in the world. I made the boys’ dinner and as soon as Woody got home, I headed out to my gym to get in a quick workout. I’d better try to get in as much exercise as possible before transplant starts because I know once that starts, all of my workouts are going to be gone for awhile. Not looking forward to that but I will just have to suck it up and keep telling myself that this isn’t forever. Soon we will have Ronan back and our lives will return to being somewhat the same; but with much more appreciation for anything and everything that comes our way. After going through something like this, the little things are going to seem so less in our life and we have learned what truly matters. I am grateful in a way for this lesson and I have all the faith in the world that Ronan was put here on this earth to teach us these things and to help us change the world. He has such a special journey planned for all of us and we are going to follow his lead. I have learned to just go with my gut feeling with most everything in my life and it always turns out right. I will follow Ronan to the end of the earth and back and feel so lucky to do so. He is the most amazing little boy. Never in my life have I known someone so strong, brave and beautiful and he is all of this at only the age of 3. Just imagine what he is going to be like as an adult. I cannot wait to see what life has in store for him.

I have learned that my days now are filled with both sadness and beauty. I am o.k. with that because I try so hard to make sure the beauty outweighs the sadness. Maybe Ronan was born such a beautiful boy for this purpose… because this has always been what his journey in life was meant to be and being so beautiful, would help me get through this?? Never has a more beautiful boy existed and I am not just saying this because I am his mother. I am not biased, this is the truth and I now know it was for a very special reason. All I have to do when I am feeling too sad or scared is look into his big blue eyes and my fears melt away. The look in his eyes tells me over and over that he is going to be fine. I truly believe that with every part of my mind, body, and soul. Everyday, I am finding things I am thankful for and it reminds me how precious life on this earth is. Ronan is a gift and I am so happy I get to share him all with you.

That is all for tonight. I am going to hot yoga with Stacy at 5:30 a.m. in the morning. Told you I’m taking full advantage of my freedom and what better way to start my morning than drenched in sweat and tears. Love you all my dear friends. Sweet dreams of peace and happiness.

xoxo

Love my name
Love left dry
Frost or flame
Skeleton me
Fall asleep
Spin the sky
Skeleton me
Love, don’t cry
Love, don’t cry
Love, don’t cry
Skeleton me
Skeleton me

Soon comes rain
Dry your eyes
Frost or flame
Skeleton me
Fall asleep
Spin the sky
Skeleton me
Love, don’t cry
Love, don’t cry
Love, don’t cry
Skeleton me
Skeleton me

Skeleton me

TGIF!

It’s the weekend! So excited to spend it with my little family. Today was a typical day for us. Big boys went to school and Woo went to work. That left Ro and I home alone. We spent the day enjoying playing outside, carved a pumpkin, and I took him to the drive through car wash that he loves to go to. He was really giggling and laughing when we were getting our car washed. He loves to watch the colored soap spray all over the windows. It was cheap entertainment and a nice little break from being stuck at home. He took a nap and I worked on some things for his website. It’s been fun doing the research on it and figuring out what I want it to look like. It’s been a good distraction for me to say the least. I talked to my friend Laurie today for a bit to get caught up on Baby Jack… the little boy who is a few months ahead of Ronan with his treatment for Neuroblastoma. She sounded so great and Jackers is doing amazing. I am always amazed at her strength and positivity. She is a good role model for me and Jack is such an inspiration. They are an amazing family and so deserve all the good things that are coming their way.

Liam and Quinn came home with their “report cards” from school today and they were so excited to show me. They both ripped them open and we went over what they said. I could not have been more proud of them. They are becoming such little men. We played outside and waited for Woody to come home. Woody and Uncle Jay came home around 4:00 with pizzas and beer. They stopped at A.J.’s and brought home a bunch of things for “Game Night” at the Thompsons. They started a game of  Risk with Liam and Quinn about 3 hours ago. I kept Ronan busy so they could play and it is still going on. Ronan had a nosebleed tonight so I tended to him and after about 20 minutes, it finally stopped. I was praying that we wouldn’t have to go to the hospital. Hoping it won’t start up again in the middle of the night. I know his platelets are starting to dip down but I think if I can keep him sleeping, he should be fine. He had a rowdy day.. lots of running and playing.

Not sure what else this weekend has in store. Liam and Quinn have a basketball game tomorrow but we won’t be taking Ronan. Now that it is turning into that time of year when the flu hits, etc…. we won’t be taking him out at all. Time to put him back in his bubble. I am going to have to get very creative as far as keeping him busy at home. Thinking some paint supplies and lots of arts and crafts are in our very near future. We have been working a lot on his school stuff and he is still fighting me on it a little bit; but I know he is learning. I hear him repeating things when he is playing and he thinks I am not listening. Stubborn little boy.

I’m going to have to say that my husband has been extra amazing lately. If that is even possible. I have no idea how he does all he does. I am so impressed by the way he is handling everything. Keeping his law firm going, being such an amazing daddy, and doting on me 24/7. If anyone is carrying the weight of the world on their shoulders, it is him. I am so thankful to be married to such a strong man who can take care of his family. There is nobody in the world who I respect and love more then him. After all that we are going through, he has kept the best attitude and positivity. He really is one of a kind and I will forever stay madly in love with him. I am thankful that my 3 boys have such a strong male role model in their lives. I know how important that is in forming what type of men they will grow up to be. Thanks Daddy Woo<3

Throughout this journey I have come to see things in such a different light. Life will never be the same again for us, but I honestly think it can be better. I have such a new appreciation for the littlest things. It is a life full of nothing but pureness and simplicity. It’s like we have been given a new chance to soak up all the things we do have and enjoy them to the fullest. Life is too short to be unhappy or worry about petty things. We are making the most of what we have, right now, in this very moment. There is no point in worrying about the future because it is the here and now that matters most. A hard lesson to learn, but a beautiful lesson indeed.

I am going to leave you with a quote that I came across today when I was doing my website research for Ronan. <3<3<3 LoveLoveLove<3<3<3

Be who you are and say what you feel, because those who mind don’t matter and those who matter don’t mind.  ~Dr. Seuss

Knock on wood

Today is day 8. Every time Ronan starts his chemo treatments, his blood levels are supposed to drop after 7-14 days. Which means, less energy, his immune system is low, etc…. Nothing yet. I took him to the clinic yesterday and his blood levels were still good. He has been full of energy and has been running around non-stop. Let’s hope this continues. Woody and I can’t get over him and how great he looks, for being so sick. None of this makes sense at all. I am just taking this as another great sign that Ronan is going to beat this and pray we continue to sail right through this. For dealing with something so difficult, he has been a champion…. not acting like a sick kid at all.

We have been taking advantage of being at home and doing normal things. The boys’ have been playing together non-stop. The love my 3 boys have for one another is so powerful and moving. It’s helping us win this battle. Last night Ronan cuddled up in Quinn’s bed and fell asleep with him. I left him there all night and only got up a few times to check on him. He slept peacefully the whole night through and woke Quinn up around 6:30 this morning to play. Ronan was upset that the boys had to leave for school this morning but I kept him busy. We ran some errands and I even took him into Target. Shhhhh! Don’t tell Woody;) I took him in to grab a few things, the store was empty, and I didn’t let him sit in a shopping cart. Poor kid has been begging me to take him for weeks now. We were very careful and I sanitized his hands about every 5 minutes. It made his day. He just wants to do normal things, like we used to do. So we did<3 And we will continue to do things as “normal” as possible. I am getting used to the looks of pity when we go out into public and Ronan doesn’t want to wear his hat. It doesn’t seem to bother me as much anymore. Heck Ronan doesn’t even care or notice, so why should I??

As of now, Ronan’s surgery is scheduled for the end December. I have a nice little story about the exact date of his surgery. I was telling my new friend, Pam, who has the little girl, Victoria, who is a cancer survivor, when it is going to be. As soon as I told her, she got a little quiet and goes, “Oh my god. That is the date that Victoria’s surgery was.” Same surgeon, Dr. La Qualia and everything. Another one of those good signs that I’ve been seeing during through this entire journey. We both got goosebumps and I got teary eyed. So Christmas in New York it will be:) Just wish it were under different circumstances but we are going to make it the best Christmas ever. As my dear Karen keeps saying, it’s one step closer to Ronan’s wellness.

Our next round of Magic Medicine does not start until November 1st. Until then, if all goes well, we will just be making visits to the clinic twice a week and we will be home the rest of the time. There truly is no place like home. Tonight, we went for a walk down to the our neighbors house. Ronan ran the entire way, only turning back to catch the football we were throwing. We had a great walk with our friends and enjoyed the cooler weather. It was the perfect evening and I was so happy that we were all together as a family.

I fell asleep early tonight, cuddled up to Ronan. Only wish I could sleep the whole night through…. ended up waking up in a panic and now my mind will not be still. Too many unknowns and worries keep me up. How do you sleep when the baby right next to you has cancer?? I woke him up to tell him I love him a few minutes ago. I tell him that 100 times a day. None of this has gotten any easier, but it has become our new way of life. This is not a life I would wish on anyone, but it is our life now and we will make it as happy and beautiful as possible. To be any other way would not be fair to Ronan or the twins. I know how important consistency and security is in a childhood. Especially in little guys who are 7. They will remember most of what we are going through so we have to make sure we make this as positive of an experience as possible.

Woody came home tonight with his hair buzzed super short. So sweet and cute of him to do. Ronan loved it and kept wanting to feel the top of his head. His long eyelashes are starting to go, as well as his eyebrows. His eyelashes are still there, but they are not as thick as they used to be. It just makes him that much more beautiful. Every feature on that child is beyond perfection.

So, if you don’t hear from me this week it’s only because I am taking full advantage of my healthy baby and being home. This week has been spent playing catch up on all the things I am behind on from being at the hospital all last week. It is amazing how far behind I can get on things around here.

Sweet dreams, friends. <3