Dear overly concerned blog reader

I read your long comment today. I thought about it a lot. I just want to clear up a couple of things. First of all, a lot of the things I write, I write during the middle of the night, when I cannot sleep and my feelings come flooding out and rightfully so. I write without much thought, but with feeling instead. I understand how this may be misconstrued and sometimes I may be overly dramatic, but my feelings are always honest and true. The whole “no fear,” thing that has gotten a lot of people pretty concerned, is nothing to be worried about. I promise you all, I will not be jumping off the Coronado Bridge anytime soon. Am I less scared of things in life now that I have just lost my son? Absolutely. It would be one thing if I was shooting up heroin in the streets of a back alley, playing chicken with a train or even skydiving…. but come on peeps… I don’t even drink wine. I’m channeling my fear into doing things like surfing, which I’ve wanted to try my entire life, but was always too scared to. My running at night… what a stupid thing to be scared of before all of this. I’m always aware of my surroundings and it just happens to be at night when I am my most restless and taking my energy out on the pavement is my way of keeping myself in check. The living without fear thing anymore is coming more from a place of not being afraid to speak up, trying new things, and living a life that is worth living by putting fear aside and living with passion; as you never know when your time will be up. It is not about hurting myself, but more about pushing myself to be the best version of myself that I can be. To do that, a big part comes of letting go of fear. I am sorry if my posts sometimes get a little too dark, but darkness is a part of my life right now. I hope it won’t be forever, but it is here and as long as it is, I’m going to deal with it and not sweep it under the rug. I am hurt and I am sad. But I also have a conscious and a little chip programmed in the back of my head that tells me that I cannot get too crazy, because I have a family to live for. You know when you can all become officially concerned?? When I stop writing. When I stop speaking the truth. When I stop running and being active. When I stop being a mom. When I start doing every drug known to mankind and when I lock myself in my room and don’t come out for days. I just watched my son die and I did none of the things above. I’m pretty sure that I’ve hit the all time low that I’m going to hit and none of those things happened. So, overly concerned reader. You can relax. I am not going to let anything happen to Liam and Quinn’s mommy. This mommy was a mommy first to those to boys and I plan on staying that way.

I understand where you are coming from, but I can’t say I agree with much of it. There was a lot of judgement in your comment and you know I am not a huge fan of that. The fact of the matter is, you are just a reader. You don’t know me, my life, my family, and what goes on in our lives every second of the day. You are making judgements from an outsider looking in, by a blog that I am putting out there and that’s not fair. But it’s to be expected. It is my choice to write this blog, and I know judgements are everywhere and I’m o.k. with that. I am secure enough within myself to handle the daggers thrown my way. Are the things you said something that I would ever say to a stranger whom just lost their son? No way. Have you lost a child?? I am thinking not. You said you have lost loved one’s before, but I’m sensing not a child. That is like comparing apples to oranges and it has no relevance to a bereaved mother. Something in particular you said, was really out of line. You are putting words into my mouth and that is not o.k. with me. This was your lovely line: “you make it sound very clear that Ronan was your favorite child, and Liam and Quinn are being forced to live in his shadow. i dread the day they read your blog for themselves, because as much as you do love them – and it is clear you love them dearly – you state flat out that Ronan was your soulmate, your best friend, your partner in crime, your *everything*.”

So, lady….Wow. I’m not sure where to even start with this one. All I know is that I had no idea that I wasn’t allowed in my life to have all 3 of my children be my favorites, all three of them be my soul mates, all three of them, my everything. Because they are. If this had be Liam or Quinn, I would be feeling the same things I am feeling with the loss of Ronan. I love all three of my boys equally. Do I have different bonds with them? Of course. Was my bond with Ronan deeper? Yes, as of now, it is. But I think that is just a part of life, and bonds change due to time and circumstance. If you had just spent the last 8 months, fighting for your baby’s life, 24 hours a day, there is no doubt in my mind that the bond would be deeper and stronger than anything that has ever existed. To say that Ronan was my favorite is absolutely true. But so are Liam and Quinn. I love them just as much as I love Ronan and that will never change. I owe my life to Liam and Quinn because they have saved it. They are saving me every second of the day by reminding me of why I have to get out of the bed every morning, why I have to engage and interact with people when I really don’t want to. Those two little boys and my husband are the only things healing me right now. You really shouldn’t be afraid of the day that they read this blog; because they know in their hearts the truth. They will never doubt my love for them and if anything, I hope that this teaches them about the importance of living a life that is true and real. If you knew my twins, which you don’t, you would understand that they will not be scarred for life from this. You would understand that the things that they are learning from going through this are to always be proud of who they are, and they are both so different from Ronan. We embrace and encourage them to be who they are and always have which is why they are such amazing little guys. They will never live in Ronan’s shadow because to us, Ronan will never be a shadow. He will forever be a light that burns like the sun, he will forever be the most beautiful star in the sky. He will forever be the reason that Liam and Quinn hold their heads up high, love life, help others, and embrace all the beauty that they get to experience in a day, while learning never take things for granted. He will be the one helping as we push them to try harder and to become the best human beings that they are capable of. I, as there mother, will accept whatever this may be, whatever mistakes they make, by guiding them the as best I can and letting them learn by just loving them unconditionally.

I don’t re read what I write, but I don’t remember ever writing anything about telling the twins that they cannot express their fear. Am I missing something? If anything, I am pushing them to talk about their fear and whatever else they are feeling during the day. We spend a lot of the day talking about how they are feeling, what they are feeling, and I am teaching them that everything they are feeling, is normal and natural due to what we have just gone through. They cry when they are sad, laugh when they are happy, and are for the most part, are just trying to be little boys who are smothered with all the love in the world. Yesterday, when they were complaining about being cold in the ocean, not because they were scared, I made them suck it up and continue on. And I am so glad I did because you should have seen the waves they stared to ride and what a good time they ended up having. For just losing their brother, they are as happy as they can possibly be. They smile, laugh, fight, cry…. they do all the normal things that 8 years olds should be doing and Woody and I deal with it all by keeping our minds open and rules in place. We are taking this time at the beach to completely engulf ourself with each other. I feel like this is the best medicine. Not to shove therapy down their throats. What would you do? Keep them in Arizona all summer, throw them in a ton of therapy, all while they get to be reminded every second of the day that Ronan just died? No thanks, lady. I met with someone from New Hope in Phoenix who deals with grieving families for a living. She is very well-respected, educated, and this is what she does everyday and she has been doing it for a very long time. She loved the idea of us getting away together as a family, to take this time to heal, and to come back after the summer and start something together; as a family. She thought that was the best idea for us and I couldn’t agree more. This is our choice, not yours. This is working for us and as much as I may sound like I am not healing, I am. I have said before that I am broken into a million little pieces. But each day I can feel a piece being put back together and I believe a lot of it has to do with the fact that we are here, together.

As far as me calling you names for stating your opinions, that’s not going to happen. I don’t know you, so that would be totally unfair. I’ll just tell you to stick it where the sun don’t shine instead. Don’t even get me started on the not telling Liam and Quinn that Ronan is watching over them. What the hell is scary about that? If anything, while they are going through life, making mistakes and causing trouble.. if they choose to do so…. they will think of Ronan and know he would be laughing with them and right there by their sides. I am not going to turn this into a “OHHHH, you’d better not do anything wrong because Ronan “The Watcher,” will be there and he see’s everything you do.” Um, no. That is just creepy. I don’t think I’ve ever told them that Ro is up in heaven, looking down on them. It’s just been more of a Ronan is always with us, even though he’s not kind of a thing. He will forever be a part of our family and we intend to live with him in our hearts for the rest of our lives. They know he will be watching over them though. Guiding them, keeping them from harm, because now, he is their guardian angel.

So, overly concerned stranger. I probably should have just ignored your comment but I just wanted to set the record straight. We are doing the best we can and the choices we are making, are ours. All I’m asking is for a little respect and I have no doubt that mistakes will be made; but such is life. This is a learning process for all of us, but we are a very strong family. We are very strong individuals. We are going to be o.k. and we are going to heal, together. As much as I write things that are hard to read, it is my truth and I will not be denied of it. As much as I say I’m not going to survive this; I know I will because I refuse to let cancer have the final say.

The last little “proof,” that I am going to be o.k…. An email from my bestie today. She knows me better than anyone and she know what her role is right now. To love me and support me the way she always has and will always do. I love you, TT.

Just wanted to send you a note this morning to tell you how much I love you. I miss you. and how much I miss Ronan. Marisa and I got to have a little dinner together last night and we talked about him for a long time. I feel like I haven’t gotten to talk about him with people as much, they are scared to talk about it. But not me and Ris, it felt good and made us happy to remember. We talked about him as a baby, how he was a little devil, how he was the most beautiful baby we’ve ever seen and mostly how we still feel him around all the time. Marisa says she sees him in so many things that are beautiful, everyday. I told her about the hummingbird and how I don’t normally believe that but I couldn’t help it this time. I’m sending you a big hug and letting you know my heart is with you every second of the day. I’m thinking about you and Woody and the boys. I am with you in the no fear living…nothing will ever be the same. You are doing an amazing job, getting out of bed and being a strong mom for the boys. No one will ever question where Ronan got his fighting spirit. Continue to fight for each day , for him and the boys. I love you and miss you more than you know.

To everyone else who is concerned or worried. Thank you. Thank you for being worried and for good reason. But that you for doing it in such a way that you make me feel loved and not judged. Thank you for saying the right words, even when you say nothing at all and for respecting my space. I love you all so much. G’nite to you all. Sweet dreams. G’nite Ro baby. I missed you today. I missed you every second of today like I will do everyday for the rest of this long life without you. I hope you are safe.

xoxo

Is an o.k. day going to be as good as it gets?

 

 

Ronan. It was an o.k. day without you. I had to work for it though. I had to work hard to make it that way and as much as I didn’t want to, I did. I spent the day with your brothers and our cousins. We went to breakfast this morning and then the 4 boys ran off to the Rec Center to play basketball. As we were walking back to get the boys changed, I looked back to make sure we had everyone with us. I almost said out loud, “Where is Ronan?” But I caught myself before those words came out of  my mouth. I so expected to see you running behind all of us. I sat out at the pool with Stacy and her little troops while the boys played basketball. It was weird sitting there in the sun and not having anyone to worry about or take care of. Gosh, a year ago…. this would have been paradise to me. Laying in the sun, headphones on, a book to read, and time to just be peaceful with myself. Today, I hated every second of it. I wanted nothing more but to be worrying about you in the water, to be watching you running around, and splashing about. I would have been so happy to have had the privilege to wrap you up in your little towel after you had gotten out of the cold water. To have held you close to warm you up and then I would have taken you up to our room for your lunch and nap time. We would have napped together like we always used to do. Instead, I watched my dear friend, Stacy, do all these things with her 3-year-old, Kennedy. She is such a little firecracker and reminds me so much of you. She had a total meltdown at the pool which I of course thought was adorable. It was a combination of being hungry, tired and a newly 3 year old. She came and laid down on the lawn chair next to me and put her little head down. I went over to her and rubbed her back for a long time and she calmed down and let me do this to her for about 20 minutes. She then popped up and was fine. It was so sweet but it still hurt. I wanted it to be you that I was comforting, but the fact that Kennedy is slowly letting me into her little world feels good to me. We spent the rest of the day at the pool and I then took your brothers, Jake and Carter over to the grocery store to cash in the recycling bottles that they have saved up. They get 5 cents a bottle and were so excited about it. We took a garbage bag full of bottles over to Vons and I think they ended up getting about 3 dollars out of it. It was important to them and I think a very good life lesson to learn about taking care of our environment and responsibility. They were so excited and happy to spend their money at the vending machines at our condo. All of us adults have been laughing over the 4 boys and their obsession with the vending machine here. It’s as if they have never seen one in their life. They live for meeting up there and spending their change. Such little things but so important to boys who are growing up way too fast. Watching how independent Liam and Quinn are becoming is hard for me. The fact that they are starting to not need me so much anymore because they are big enough to go down to the vending machine alone feels strange. I’m so not used to having things this way. I feel like in the blink of an eye, they have become little men. In more ways than one and unfortunately a lot of that comes from losing you. It’s not fair and it’s not right. I don’t want them to ever feel like they have been robbed of their childhood which is why I am trying to encourage them to be boys and  to learn, explore, make mistakes, but also learn right from wrong. They both have such good heads on their shoulders but when they do things like take a stick and put it up a vending machine to get candy out, and then run to tell me about it, I’m not going to get mad. I want them to be boys in every way possible. Just as long as they also learn there are consequences, but honesty will also go a long way in this family. This is all stuff you should be learning too, Ronan. Your brothers would have been the best teachers to you. I’m sorry everyday of my life for them and for you. I will love them so much more because of your absence. Even though it feels like I have a connection to nothing or anyone, I know it will slowly come back with them. It is days like today that give me that hope.

We had Stacy and her kids over for dinner. Afterwords, we drove over to Pinkberry for Frozen yogurt. I had an unexpected feeling of happiness wash over me when I went to cross the street with Stacy’s little girl, Kennedy, and she grabbed on to my hand and we ran across the street together, with our hands intertwined. It reminded me of you. I sat and watched her devour her frozen yogurt and thought about how much the two of you would have loved each other. I had a flash of seeing you two together and the mischief you would have caused. I ached for it so badly. She loves Liam and Quinn and I know she would have been crazy about you. You two would have been two peas in a pod. After our frozen yogurt, Stacy dropped us off and Liam and Quinn were pretty tired. They fell asleep fairly quickly, almost before I could even tuck them in and we said our good nights to you. They are both so tired from their day of swimming, basketball, and playing in the sun. They miss their cousins who left to go back to Phoenix today already. The good news is, there is a new set of cousins who arrived today so I have no doubt they will be just as entertained.

I ended my night with a phone call from my friend, Doriet. I know you remember her little girl, Esther, who passed away just six days before you. We had a good talk tonight and both seem to be in a similar place; struggling a lot but we both know we have to go on. She had the same kind of connection with her little girl that I had with you. One so strong and deep that you cannot even explain it. You two were such similar souls and I feel that way about her mom and I. We loved the two of you so deeply that is was almost not human. This is one of the reasons I know that we have such a special connection. I think about Doriet everyday and Esther too. I hope you two have found each other and are playing away. Doriet says Esther leaves her signs everywhere. She knows Esther is still with her much like the same way I know you are still with me. I want to go back out to New York maybe in the fall to spend some time with her. I want to go back out to take a picture of you to Dr. Kushner and make him look me in the eyes. I want him to acknowledge the way he handled us was not right in the end. I’m going to lose it if I don’t get to close that chapter in your journey. I really wanted to run in the Marathon for Fred’s Team in NYC next year, but I am so pissed that I don’t even know if I can support his cause. How can I support a man who could so easily just brush you off. I don’t care if people tell me to just let this go because I’m not going to. Parents who have just been told the news that I had to be told, deserve more than that. I don’t care if this doesn’t change him or the way he does things, but he is still going to hear me. I need to know that a fraction of him cared and is human, otherwise I am going to forever think we made a mistake in letting him treat you. Maybe he wasn’t worthy of caring for you, maybe it should have been Dr. Mosse all along at Chop. Fuck me. I told Fernanda the second I met Dr. Mosse that it was her,  that she was going to be the one to save you. It was my gut feeling. But then we decided to go with Dr. Kushner because he said he would do whatever it took to save you. He convinced us. Well, he didn’t. He threw us away like an old rag and this will never sit well with me. I’m pretty sure, no matter what road we chose, your outcome would have been the same. At least that is what I tell myself to get though the day. At the end of the day, your dad and I had to pretty much navigate your treatment ourselves and we did the best we could. It should not be this way. We are not fucking doctors. The fact is, there is no cure when there should be. It’s a matter of luck and you got the short end of the stick my baby. I’m sorry a million times over. I’m sorry for you and my heart breaks daily for Doriet. I love her and I know how badly she is hurting because I am right there with her. It’s not fair and it’s not right. When the time is right, I will go and be with her and we can grieve together because that is one of the bonds we have and it is too strong to let it go. It needs to be done for the two of you and for the both of us.

I love you, Ronan. I’m tired tonight and I miss you so much. I will sleep with you in my heart as I do every night as I cuddle up to your blanket. Thank you for helping me to have an o.k. day today. I really needed it. G’nite my sweet, beautiful boy.

xoxo

 

I live my life for you

Ronan. Ouch. Ouch doesn’t come in the form of you hurting from your broviac dressing changes we used to do every week. Ouch doesn’t come in the form of the pokey shots we used to have to give you after you finished your round of chemo. Ouch now comes in the form of living this life. This life without you. It comes in seeing all of the little kids who are your age running around the beach. It comes in the form of seeing the beach towel today that had your Paul Frank monkeys all over it. It comes in the form of my obsession with taking pictures and you are now missing in every one of them. You are just gone. I’m waiting for you to appear in a picture of your brothers, right in the middle where you used to always be. It is beyond weird not having you around to take pictures of, Ronan. You were such my little ham and I used to absolutely die over talking pictures of you and your big blue eyes. I miss you so much it hurts. The pain is not getting any better. I still think it is getting worse as the days go on and I watch everyone else in life with their beautiful kids. I sit and wonder to myself, do they know how lucky they are? How lucky they are to be able to just hold the hand of their little ones to cross the street? How lucky they are to deal with a tantrum or go through the terrible twos? Those people I watch from my new set of eyes are so unbelievably lucky. I find myself sitting back a lot now and just absorbing my surroundings and wishing for you. I want to scoop up every little person I see and tell them I love them, because I do. They all remind me of you in different ways. The little boy with the blue eyes, the little girl with the mischievous smile, the laughter and innocence that these little people are so blessed to have and they don’t even know it. And they shouldn’t know it; but their parents should. I hope so much that all these people who are touched by your little life now take the time to be grateful for having something so simple and beautiful. I hope they kiss and love their kids so much more now. That is my wish for you, Ronan. After you passed away, I sat and kissed your little cold lips about a dozen times. I wanted to sit in that room with you and kiss you forever. Instead, I now get to sit and cry about how I will never be able to kiss your little lips again. You had the best lips too. They were so full and soft. Your daddy and I were talking about you the other day and how unbelievably perfect you were. I keep thinking you were too perfect for this world? Your beauty was unlike anything that I have ever seen before. I don’t understand why you had to be taken away from us. I will never understand this which is why something has to be done, Ro. After this summer is over, I’m going to figure out a plan. I have got to help other kids like you who deserve to survive this disease. I will do it for you and in your honor. I know this will not bring you back, but I know it is something that would make you proud and smile. I miss your smile so much.

Yesterday, I laid in bed for a long time and held your blanket and cried. I cry about you all of the time now because I am constantly feeling the emptiness of life without you. No more shock, no more numbness. Your brothers have been taking really good care of me though. Quinn likes to lay with me when I am sad and we talk about you. He falls asleep holding my hand much like you used to always do. You have the most amazing brothers, Ronan. I thank god for them everyday of my life. I don’t know what I would do without them. We are slowly finding our way back together. They have had such a great time being little beach bums with their cousins, Jake and Carter. It is so therapeutic to watch them grow close to their cousins. It gives me a lot of peace of mind. One of the most beautiful things to come out of this has been seeing all the new bonds and relationships that have been formed. I said this the other day to someone….. that one of the things I treasure most is how I’ve watched my beautiful girlfriends all come together and the new friendships that have come from this. The bond that they have all created is such a gift to me. They have all given me such a gift by helping me through this that I hope this gift is something that I have given to them. It’s been like watching a puzzle slowly come together and I know the friendships that have been formed will be friendships for life. We are all like sisters now. I watched the way they all came together for our family and for you. They fought and continue to fight for us. I never knew what a powerful thing love could truly be, baby. It was only when you got sick that my eyes were opened up to a whole new world. It is a beautiful world indeed, but I so wish I was learning this lesson through something else rather than losing you. I don’t know how we are going to heal without you, Ronan. I think our new life is going to have to drastically change. It’s going to have to have a much bigger purpose, a much bigger meaning than living in the little bubble that we lived in before all of this. We are working on the healing part of this a now. Baby steps. The ocean. Family time. New adventures. Simpleness. I can’t tell you how exactly we are doing this, but the fact that we all get up everyday and somehow manage to smile is a good enough start for me. It is all we can do right now, Ronan.

Today, Quinn and I were taking our usual walk to Starbucks. I had on my sunglasses, fedora hat…. my usual, “hello I just woke up look on and I’m going into town.” We were walking on the boardwalk and this girl and her boyfriend passed us. I only noticed her because she had some flannel shirt on and I thought how cozy and cute it looked. A minute later, I heard someone running up behind me and she goes, “Maya!” I turned around and it was the girl in the cute flannel shirt. She then told me how she reads my blog. I was shocked  she recognized me and I asked her name and introduced her to Quinn. She introduced me to her boyfriend and I asked where she was from; she said Arizona. It was so random and so sweet. So to Allie today, thanks for having the guts to run up to me and say Hi. It was really nice to meet you:) Enjoy the rest of your time here, although I think you are leaving to go back to AZ soon. I hope you had a nice trip here.

After we returned back to our place, we met up with Stacy who is here for the week with her kiddos and Kenny. So fun to have them here with us. We split up since I had a surfing date with Katie and Sarah. We took lessons today and I’ll have to say it could become my new obsession. For the first time in 9 months, I had to fully forget about everything in my life and focus on fighting to get up on that board, stay up, and concentrate like I have not had to concentrate on just myself in a very long time. We stayed out in the ocean for about 3 and a half hours today. It was just what I needed and I loved every second of it. I’ve always wanted to surf. So stupid that I’ve waited so long to try something that I’ve always wanted to do. There were always too many excuses before. Well, not anymore. I’m done making excuses, Ronan. I’m going to live a life full of passion and adventure and I’m going to do it not only for myself, but for you too. Life is too short to let things hold us back. All fear is out the window. I’m done being scared. You were never scared of a thing in your life. You have left me this gift and I will keep living this way for you. I owe you so much for teaching me so many lessons. You are my hero, Ronan. You are my everything.

That is all for this evening little man. I love you to the moon and back. I will keep you in my heart forever. Sweet dreams, my love.

xoxo

You belong among the wildflowers

I was telling my bestie today that I remember when I was a child and my parents used to watch the show “30 Something.” As  a little girl, I always thought the people on the show were so old and the show was really strange. I then told her how I wished I would have paid attention because then maybe, I would have picked up on the warning signs that being in your 30’s is hard. Or maybe it’s really not, and it’s only because of our situation, but is seems as if everyone around my age is going through something right now. Please tell me it gets easier…. because right now this is so not how life should be. WTF?? I also told her that I feel like someone just came along, took a look at me and thought, “Oh, hello. You’re life is too perfect so we’re going to give your kid cancer.” Just out of nowhere, BAM! This comes along. Really? Thanks a freaking lot. Couldn’t I have been hit with something a little less drastic? This is so not necessary. Trish and I both decided that if we were told that the world were ending tomorrow, we would believe it. It is the only explanation for all of this bullshit. I am laughing out loud thinking about something that happened after she and I hiked tonight. We were walking back from Camelback Mountain and we were almost to my house when some car comes flying out of their driveway and almost hit us. Tricia seriously had to grab me and pull me back from being hit by the car. We both then started dying laughing saying how we should have just jumped in front of the car so it could have hit us. O.K…. maybe not such a funny story as I sit and re tell it, but we were dying laughing. Totally kidding of course but I swear the only way I am going to get through any of this is laughing at as much stuff as possible. No matter how morbid it may be. Oh, bestie. How I love you so. I will tell you everyday of my life that you are my saving grace. I am so lucky to have you. Together we will get through all of this. I promise you this.

So, this weekend, as horrific as it was due to some terrible bullshit that has gone down; was absolutely lovely. Pain and sadness cannot be denied, but through all of the tears I see a soul being cleansed and renewed. It is amazing what can come of things when you are surrounded by the people who love you the most and who refuse to let you fall without picking you back up. This weekend was spent doing things that we used to do as a family before all of this. Hanging out, going to baseball practice, playing outside, movie night, eating out for breakfast. Such normal family things. It felt so nice because it has been so long since we have been able to really spend time together like this. Ronan is acting as if he is the healthiest boy in the world. He is full of nothing but giggles and smiles, love and light. He is so happy to be at home with his toys and his brothers. He happiness is infectious and keeps us strong.

I spent a lot of time outdoors this weekend doing what I used to do before all of this. I went on a 2 hour hike with Trish and Sarah yesterday. It was so therapeutic. I love nature, love being outdoors and the time with the two of them is always healing for me.  Then this evening I hiked Camelback with my Tricia Boo. Hiking Camelback is something we used to do all the time together. It’s our church and our special place. We got to the top, sat down for a bit, and I prayed my little heart out. It was so peaceful and gorgeous. I miss doing things like this so much. I’ve already made Trish promise that we will get back to how things used to be, as much as possible. I’ve got to have a little normalcy in my life and time spent with her, running or hiking is so good for both of our souls.

Ronan and I go to PCH to the clinic tomorrow. They will do the standard checking his blood levels to see how he is doing. I’m not sure when, but sometime this week we are flying out to NYC so they can check my blood and do his scans. You ready to hear step one of what we will be doing at Sloan for Ronan?? Here goes……

Full Title :
PHASE I STUDY OF ANTI-GD2 3F8 ANTIBODY AND ALLOGENEIC NATURAL KILLER CELLS FOR HIGH-RISK NEUROBLASTOMA
Purpose :
The goal of this study is to see if it is safe and feasible to give chemotherapy (topotecan, cyclophosphamide, and vincristine), natural killer (NK) cells, and an antibody called 3F8 to patients with high-risk recurrent or persistent neuroblastoma. 

The NK cells, a type of white blood cell, must come from a patient’s relative who shares half of his or her HLA proteins, which are immune proteins important in transplantation. Studies have shown that NK cells from a donor can be given safely and can be helpful in treating some diseases. These NK cells are collected from the donor and purified.

NK cells can recognize and kill abnormal cells in the body and can work together with antibodies to kill target cells. The antibody 3F8 specifically recognizes a protein present on neuroblastoma cells. Researchers have already shown that the 3F8 antibody can be administered safely to neuroblastoma patients. They want to determine the effects of the combination of chemotherapy, NK cells, and 3F8 antibody on patients’ cancers and bone marrow function, and how to maximize its benefits in treating cancer.

Eligibility :
To be eligible for this study, patients must meet several criteria, including but not limited to the following: 

  • Patients must have a confirmed diagnosis of high-risk neuroblastoma that has persisted or progressed despite standard therapy.
  • Patients must have a matched blood relative who can donate NK cells.

This is where we are starting. We will start this on March 21st and will be in New York for 5 weeks straight. We will then be able to come home for a 3 week break. To explain all of the treatments combined right now is too overwhelming for me. But I wanted to let you all know where we are starting off. Dr. Kushner has seen great results in the lab as far as this study goes and it’s been successful in kids as well. We are putting all of our trust into him. This has to be effective. We don’t need anymore bumps in the road, please. This is going to be tough on Ro. I know the 3F-8 stuff is painful. But he is so strong. If anyone can do this, it’s Ronan.

I hope you all are well tonight and had a beautiful weekend. We are so thankful for all the love and support through all of this. We are very thankful every second of our lives. Sweetest dreams to you all.

xoxo

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

Sad to leave, but have to go

The update is we are coming home tomorrow. I am scrambling, have been scrambling for a couple of days now, mentally, I was not ready to go back to Arizona. I feel like I’ve taken these past couple of days to get my mind wrapped around coming home. I feel like I am ready now. Who am I kidding, I am not ready at all. Everything about this trip has been so positive and I am beyond sad to leave earlier than expected, but we cannot fight the COG on this. The COG is the Children’s Oncology Group and they are who is charge of Ronan being on study. We have to stay on study, we want to stay on study, because we really are hoping that Ronan is going to be chosen for 2 stem cell transplants, instead of one. If we go off of study, we won’t have any chance of getting a second transplant, and after the research we’ve done, we really feel like this will increase his chances of survival. So, in a nutshell, the COG is bigger than the doctors and we just have to follow their rules. Hard for me because I really just want to give them the middle finger. I just want what is best for Ronan, and as I said before, I feel like letting him heal fully here is what he needs. But things change and now we are coming home.

Also, Ronan has developed an infection in his broviac line. He has been spiking fevers the past few days and they thought it was just due to surgery, but they tested his blood and one of the cultures came back positive. This is a minor bump in the road considering all we have been through. It is something that Sloan has under control and has been reassuring me that it is something that is treatable with antibiotics. Well, they started the first dose of antibiotics last night and as I was holding Ronan, I looked down and his entire head was red and he started itching it like crazy and screaming bloody murder. I looked at Mace and Tricia who were both white as a sheet and said, “Call the nurse, he’s having a reaction.” Sure enough, I was told, he had developed what they call “Red Man Syndrome” to the Vancomycin. The nurse came rushing in and told me they would start him on Benadryl to get rid of the reaction. I was pissed. I wanted to know why in the world I wasn’t told that this could possibly happen, and I was informed that it happens to about 60/70 percent of the kids that get this antibiotic. Gee, I wish somebody would have told me this little piece of information, just so I could have been aware of it instead of being scared to death because I did not know what was going on with my child. What if he would have stopped breathing or something?!? We were soon able to get it under control and thank god for Dr. Maze, who I was texting during this entire thing. He took the time to calm me down and explain everything to me. We had a not so good nurse last night who did not seem to know anything and seemed very nervous about all the questions that were flying her way. Other than that, the nurses have been incredible and so has the care. Last night was rough but we got it under control and were able to get Ronan settled down and back to sleep. His fevers have stopped and we will get one dose of his antibiotic tomorrow at 7 a.m. with the Benadryl before, which takes 2 hours. We will hop on our flight after we see Dr. La Quaglia and as soon we land in Phoenix we will have to go right to PCH so we can check in and get Ronan’s second dose of the antibiotic. He has to have it twice a day for about 10 days. All of the doctors here have reassured me that we can still start his chemo, even with the infection, as long as his fever does not come back. I’m even more mad about having to leave here now. How mad is Ronan going to be knowing that we are going home, but don’t really get to go “home” and he has to stay at PCH for about 10 days. It would have been so much easier to stay here. STUPID COG. If you can’t tell I’m a wreck. My anxiety is through the roof and my nerves are shot after these past couple of days.

I sent out an email yesterday to somebody who shall remain nameless, asking if there was any possible way they could fly us privately back home. Part of my panicking was the thought of putting Ronan on a flight. Within the hour, I got an email back, and then a phone call saying, absolutely, they could get us back to Phoenix on their private jet. No worries that is was so last minute, no questions asked, they were just so happy to help. I cannot say thank you enough to you, SB and Mr. B. You have just given us such an amazing gift in helping with keeping Ronan healthy. Thank you from the bottom of our hearts and I can’t wait for the day that I can personally thank you with a big hug and one of Ronan’s famous smiles. We are beyond grateful that there are such kind people in the world out there like yourselves. O.K…. SB….. I know you said no more thank you’s so I’ll stop. After one more huge, THANK YOU!!!

Last night was one of the most heart wrenching/fucked up/hilariously funny nights that I have ever had in my LIFE. Tricia and Macy (who now by the way are in LOVE with each other;))stayed at the hospital with me until about 1 a.m. Macy picked up Thai food (which was to die for) and we got some bottles of Sangria to go and smuggled them into Sloan. While Ronan slept, we ate, talked, laughed, cried, and laughed some more. Macy and Tricia got to see what my world is like on a day to day basis. Macy was bawling half of the time which in turn made me cry and our poor sweet roommate…. she had a crisis with a bloody nose, throwing up blood, and she was scared to death. She is the most beautiful 11 year old girl that I have ever met and she is fighting bone cancer. She has had 17 rounds of chemo and surgery on her leg. It was a privilege to share a room with her and her amazing mom. I tried to help with the bloody nose situation, since I have been there many times with Ronan. I went over and I tried to explain it to her and to calm her down but I wanted to just curl up and die. Her mom was on her bed holding her while her little girl sat and told me how tired she is of being sick, how much pain she is in and how scared she is. I started bawling, and when I finally went back to my side of the room, Tricia and Macy were bawling as well. In the 3 days that we spent with this little girl I heard her talk about all the things she appreciates in life and how she is so thankful for her “good days.” She is wise beyond her years and stronger than most adults. One of the most beautiful, inspiring, souls I have ever met with an amazing family who will no doubt, get her through this. Tricia, Macy and I bonded over so many things last night and Macy is now without a doubt, a friend for life.

I got all of our stuff packed up today while Tricia stayed at the hospital with Ronan. I came back to Sloan and Trish ran out to do some things. She is probably in the middle of cleaning our room at the RMH so we can be all ready to go tomorrow. Thank you, TT~ I don’t know what I would do without you. Macy came by to say good-bye to us and left me with a card. After she left, I opened it up and started to cry just from the words on the front of it. I’m an emotional wreak tonight. Ronan is depressed and told me tonight with his lip quivering, that he misses his brothers so much. Tomorrow is going to be awful. All Ro wants to do is to be home with Liam and Quinn but he can’t. I’m not even sure that the boys’ can come to PCH to visit due to it being RSV season. UGH. I don’t even want to think about how much Ronan’s heart is going to break going from one hospital to the next. Poor baby.

Tonight I say good-bye to New York with a heavy heart. I’m scared to go back to reality and back to my real world… I’m scared I’m going to lose the Maya that I have found while being in this city. As crazy as this sounds, this trip was one of the best trips of my life. Knowing that Ronan came here with a big job to do and it was so successful and positive, is maybe why it seems so hard to leave. I’m sure most of this is just my anxiety speaking. It will be wonderful to be home surround by my sweet twins, amazing husband, family and friends. I have missed you all dearly. I’ve just got to figure out how to keep this momentum going that I have found in this city. I will forever be in love with New York, Sloan Kettering, Dr. La Quaglia, Dr. Kusher, and the whole team of Neuroblastoma doctors. I will be back here next year to run the Marathon with Ronan in remission and waiting for me at mile 16. I love you New York! I feel so blessed to have had you heal myself and my baby!!

Goodnight world. Thanks for all of your love and support!!!

xoxo