Tag: Nature

Turns out Maybelline Great Lash Mascara isn’t so great when you’re a bloody mess

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Ronan. Finally, I can sit down and have some time with you. I hate that I haven’t been able to write, let alone breathe lately. I’ve been so unbelievably busy that I swear by the time my head hits the pillow at night, I am out like a light. Such a change from how things used to be. I miss my insomnia nights where I used to stay up and write to you. Poppy has been keeping me incredibly busy. I forgot how time-consuming this whole breast-feeding thing is and your little sister has such an appetite that I swear I am feeding her around the clock. I know it’s what’s best for her and I love spending the time with her doing it, but it does leave little time to get things done around here. I’m just trying to soak it all in still because I know how quickly this time passes. Things are still going amazing with that little sister of yours. She is still a happy girl and is sleeping at night like a champ. None of us can get enough of her. I won’t let her out of my sight and she goes everywhere with me. She even went to her first board meeting the other night and didn’t make a peep as everyone passed her around to love on her. The amount of love for this baby girl blows me away. It’s like she’s getting double the dose from everyone due to the impact you’ve had on all of us, Ronan. She is so lucky to be surrounded by the most amazing souls. I can only imagine what an amazing little human being this will make her. Tomorrow, she will already be 2 months. It has flown by so fast and she is changing so much. She’s now doing really cute things like smiling and cooing at us all. Macy swears she can understand everything we are saying and she trying to have a conversation back with us. The way her eyes look at all of us while we are talking to her makes me think she is right. This Poppy girl already seems to know so much.

Your brothers are out of school. Normally, we would be in San Diego by now but this year we decided to take a little break. Your daddy was burnt out on it and I don’t blame him. One more year of going to the same spot where we always took you, without you was going to be too much for me to handle. I almost had a nervous breakdown last year. Too many almost 4-year-old blond-haired boys running about. Too many swimming pools without you in it. Too much of everything I pretty much never care to see again. It wasn’t therapeutic and it wasn’t healthy for me to be there last year and I have no interest in returning back to a place that I so desperately want to be the same, but it never will be the same again. So we are still in AZ. Your brothers have started a basketball camp which they love but it’s only for a couple of hours a day. The rest of our days have mostly been spent just hanging out having play dates, swimming, and they have helped me with a lot of things around here. We have our little, Rachel, in from NYC. I love having her here so much. We all do. Just another one of those amazing things to come from this blog and from you. She is our family and I love seeing her with your Poppy sister. Now, if I could only get her to move in and be our nanny;) Something tells me that would not be enough to keep our little smarty pants I just graduated NYC and now am working at Columbia University entertained. I am so proud of her and all she is doing. Macy calls her Saint Rachel because she is that amazing at 22. I feel so blessed to have come across this soul who is now a part of our family. We are all going to miss her so much when she leaves. Hopefully she will come out to Washington and visit us when we are there this summer.

That is what we are doing this summer. I am taking your brothers and sister to Nana and Papa’s house. It’s all your brothers have been talking about for months. I’ve been having to listening to them begging to go out earlier, but we had some things to take care of around here first. Believe me, I am just as excited as they are. I miss my parents and my childhood house where I always feel so safe and sound at, even under the shittiest of circumstances. It will be nice to have help with your sister and brothers. Washington is my place of peacefulness where I feel like I can actually breathe for a little bit. And no almost 4 year old blond boys exist. It will be nice to take a little break from the rat race that I often get caught up in here. I have lots of plans that mostly consist of no plans at all, besides spending a ton of time with your brothers and Papa Jim doing our favorite things like fishing, hiking, playing hide and seek until dark, and enjoying all the beauty the pacific northwest has to offer this time of year, including hopefully many days of rain. Please, please, please Washington rain gods, work your magic. I have been missing our rain so much, Ro.

We had a board meeting the other night. We have so many things in the works and so much coming up. A few top secret things that involve a kick ass rockstar. We still have not heard back on the petition to light the Whitehouse Gold for September. I’m not sure if that’s a good thing or a bad thing. I am still hoping for the best. After the board meeting, I told your daddy I would have Fernanda drive me home because I needed to spend some time with her. We had a lot to talk about and as always, it circled back around to you. I know you know how I am. I don’t let my guard down in front of many people. I much prefer to do all of my crying alone, and don’t often do I do it in front of others. There are only a handful of people who I am comfortable enough with to let everything out. I’ve never had a guard up with Fernanda which is why after our little pow wow, I could barely get my ass back into our house because I was seriously blinded by my tears and the fucking cheap ass mascara I wore that day. Remind me never to wear a different brand of mascara than I normally do. I came into the house, my eyes were black and stinging so badly from the mascara running in them, that I had your daddy in a complete panic. I ran to the bathroom to take out my contacts and wash my face while your daddy hovered over me begging me to tell him what was wrong. It’s the same thing it always is, Ronan. You are dead, I would give anything to have you back, I sometimes still don’t want to be here, because I just want to be with you, where are you? who is taking care of you? and why can’t it be me? Everything in my body still yearns for you, screams for you, begs for you in the worst way. Sometimes your daddy and I sit and bed at night and whisper secrets.

“Do you ever think Poppy has parts of Ronan?” he asked me the other night.
I quietly said, “Yes.”

“Me, too.” he said. “Is that wrong?”

I just told him through my tears, “If it gets us through this, does it really matter?”

I don’t think that it does, Ronan. She is parts of you without a doubt. Just like Liam and Quinn are, too. Many days I catch glimpses of you through your brothers and it helps me in a way. I see you in Quinn’s still sometimes with his mischievous ways. I see you in Liam’s strength and the way he carries himself so proud, like you always did. Poppy feels like you. She reminds me of you. I know you sent her to me to give me a little piece of you back. And some days I think you sent her to me to give me a lot of you back. I don’t care how whack-a-doodle that sounds. Thinking that way helps me to survive this insanely painful life without you here. I can’t tell your baby pictures apart. I can’t get over that she has the same little secret dimple that you had only when you smiled in the same exact spot. It gives me goosebumps and butterflies at the same time. I like living in this Poppyland. It feels o.k. again. Some days it even feels good.

Alright little man. I miss you so much. I miss you. I love you. I hope you are safe. Sweet dreams baby doll. G’nite.

xoxo

P.S. Please keep our Kassie safe while she is away on her amazing African adventure. I know she took you with her. Thanks, baby.

P.P.S. Does anybody know anybody high up at our local cable company Cox Communications?? Woody went to tour one of our Ronanld McDonald Houses here today because we are looking to help them with some of their wish list items. We would like to make some things better for the families that have to stay there. Turns out, they don’t have the place wired for cable because Cox wants to charge them full price and won’t give them a discount. Seriously? That makes me so mad. I love it when people try to make money off of people who are going through a hard time. It’s a freaking non-profit, Cox Communications. Give me a break. I might like to write them a little letter or speak to somebody who is higher up over there. Thanks, lovies for anything you can do.

xx

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Nature is my church and you are my teacher


Ronan. Hi babydoll. We are still at your Nana’s house. It feels like we’ve been here, forever. I don’t miss home. I do miss your daddy. He can’t come out this trip, which is killing us both, but we are both doing our best. All that time he took off during May/June has left him with a ton to catch up on. I hate knowing that he is at home at night, in our empty house with just your urn, to keep him company. It is so wrong, on so many levels. I’m doing my best to play the role of both parents here. Your Papa Jim and Nana have been a big help. Your brothers have been really good. We have been doing so much…kind of going non-stop. Last night, your Papa Jim wanted to take your brothers out on his boat, night fishing. “What do you mean, they’ll be gone until midnight? No way! I already have one dead child, I don’t need anymore!” I said to your Nana with a look of terror on my face. “They aren’t going.” But then your brothers, begged. And begged some more. Normally, I would not give into the begging. I thought it through. Night fishing with Papa Jim. Who knows when this will happen again. New memories for them. An adventure. Something they will treasure for the rest of their lives. “You can go if you both promise me this. No fighting on the boat. I want text message updates every hour. Under NO circumstance does your life jacket come off. EVER. You follow the rules and listen to everything your Papa says. Pinky promise me.” We hooked pinkies. “Thanks, mom!” They were so excited. I got text messages, every hour on the hour. The cutest little text messages. Your brothers are so sweet, it kills me that they have to go through any of this. I am trying my best for them, Ronan. And for you. I think I am doing an alright job. I feel like I am doing much better for them, then I was doing last year at this time. Everyday is still as struggle, but it is easier for me to be more present and engaged with them, then it used to be. I decided awhile ago that for as much pain as I am in, I cannot ruin their lives, even more by bailing out. They don’t deserve that. They don’t deserve any of this, but what happened to you was not in my control. What happens to them, due the the way I react to the loss of you, is in my control due to the decisions I make. I am trying to be a good mom to them still, Ronan. I am trying so very hard. I think somedays, I get it right. I hope they will forgive me for the days that I just can’t seem to pull my shit together. They don’t happen very often. But I hate that they have had to see them at all. 

Your brothers and Papa got home around midnight. They caught a huge Salmon. I am so glad they did. That made their adventure, even better. We all 3 slept in again and I woke up to hearing the giggles and laughs coming from outside. I went out to see what was going on. Ahhhhh… the cleaning of the salmon had begun. Liam was gagging and would not get near it. Quinn was gloved like a freaking serial killer and was cutting away with a huge knife, helping your Papa, clean the thing. I got there just in time to snap away so great pictures. It was a beauty of a fish. Quinn then proceeded to take the head of the fish and inform me that he was a doctor, performing surgery. I watched him as he cut away and dissected the entire head of the fish down to the eyeballs. This might make some mom’s squeamish. Not your mama. I was right in there with him, helping him with all the guts and blood. Sometimes he is so much like me, that it is eerie. I’ve never been one to be squeamish over guts and blood. But it does take me back to you, of course. All of the bloody noses that we had to deal with. I will never forget those, Ronan. They haunt me at all times of the day. I’m so sorry baby. For all you went through and even after everything, nothing could save you. How could that even be? I’ll never ever understand, Ronan. I would have done anything to save you. I would have taken you anywhere. I look back and regret so much. Even though your daddy still swears we did all we could do. That will never be good enough for me.

After the cleaning/operation on Mr. Fish, we went to Oregon to hike Multnomah Falls. These two states, often leave me breathless Ronan. There is never ending beauty, everywhere. I miss it here, so very much. I have for a really long time. We had the best day with your Papa. It was day full of simple surprises. The deer that we saw on our hike, that was just sitting there, eating the leaves not even 3 feet from us. I saw it and immediately thought of you. “Oh, a gift from Ronan.” I think every beautiful thing I see, feel, or hear in my life is a gift from you. It was so perfect, calm and sweet. The deer wasn’t scared of us, it just nibbled on it’s food, while staring into my eyes. It jumped away after somebody came by with a dog. I could have sat and started at it, forever. It was almost the most perfect day. But you should have been there, too. I kept looking for you everywhere and imagining what you would have been doing. I do that with everything we do, without you. I know you would have been right in there with Quinny, dissecting the fish. I know you would have been right there with Liam, throwing rocks into the waterfall. I know you would have made me carry you, halfway up our hike. I know you would have been eating that ice cream cone, with your Papa and giggling with him in the car. I know these things, even without you here to do them. I live my life imagining you this way every second of every day. Nothing I do in my life, is without you.

I’m going to end this here tonight now, Ronan. I am a blubbering mess and I am trying not to cry too much because I don’t want to wake up your brothers and make them sad. They are both sleeping right next to me. We miss you. We wish you were here. I love you, little man. I miss you so very much. I hope you are safe. Sweet dreams, baby doll.

xoxo

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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