Tag: prayers

The next person that tells me Ronan wants to go home, to heaven, can piss off

Holy Fuck. How did I get here? I’m at The Ryan House; the most beautiful place we have been so far on this journey because my son is going to die? And everybody knows this except me? Am I in that movie, “The Truman Show,” where everything is just pretend and I’m some experiment being watched to see how I’ll react to everything? Please, please, please, somebody tell me that’s the case. I don’t think it’s even hit me what is going on, why we are here, and why everybody has been crying, until now. Until I stepped outside tonight to get Woody some things from his car and in the room across from us was a baby who was on the verge of her last breath and I stood and watched while it was happening. The door was open and I could not look away. The nurses were crying, parents, family, everyone was hovering over this baby. They were preparing for her to take her last breath. In that room, I saw myself, huddled over Ronan, begging him not to go. Is that my future? Does everybody know this except me? Is this the reason that The Ryan House was full of my friends and family today, and when they all came into Ronan’s room they could not hide their tears. Am I the only one who thinks this is not going to happen?? Even though I am hearing whispers of he has days left. Who are they talking about? Couldn’t possibly be Ronan. He gave me the biggest smile today and told me he loved me to the moon and back. So what if he cannot walk anymore because his legs hurt so badly. I can fix that with Radiation, right? Just like I fixed his arm. So what if he is not wanting to eat anymore, I can fix that too with his all his favorite things like Strawberries and Whipped Cream. I can get him to eat for me. I sent Woody and Fernanda a list of people, resources, other doctors to call today. Woody has been on the phone all day. I’m not accepting this until I hear there is nothing more to do from 100 different people. I’m not giving up. I am his mom, I can fix anything. That is my job and I refuse to fail.

I have not been outside in a couple of days I think. Tonight, I found myself on the patio, curled up on the phone, bawling to my Mr. Sparkly Eyes. I don’t think I screamed, but I remember sobbing and listening to him cry with me. I told him over and over that I cannot have Ro leave me, I cannot live without him, please make it go away. He told me I could yell at him, how sorry he was, and begged me to sleep as I cannot remember the last time I really have. It’s been a couple of days I think. I told him how could I sleep, how could I possibly close my eyes, what if I missed Ronan’s last breath?? I will never forgive myself. I’m not going to miss any time that I have left with him although I forced myself to come outside and write tonight while Woody sits with Ro. You see, if I didn’t, I was on the verge of packing up all of our stuff and getting Ronan out of here. Maybe if I take him away from The Ryan House, he won’t die. My thoughts are not rational, but they seem realistic to me and I could seriously see myself grabbing him and never looking back. I don’t want him to die here. Even though everyone is insisting this is where we should be. I want to be home with him, where he is safe and none of this is real. Being here, magnifies everything by a billion. I don’t like the look of all of the sweet nurses, doctors, and whomever else has been hovering about. They all have the same look of pity, sadness, and no hope. I get the feeling they don’t see miracles happen very often with children that come in here with cancer. Why can’t Ronan be that miracle? Why is that asking too much? We are nice people, we deserve a happy ending. There will be no happy ending of this story if my baby is ripped out of my arms. What will they do with him? Where will they take him? I’m not letting him go. They will have to pry my arms off of him with a fucking bulldozer. I’m not letting him go. Call the fucking psych ward because that’s where I am going to end up if this all goes down the way everyone thinks it is going to.

“Everything happens for a reason.” BULLSHIT. “You were given this because you were strong enough to handle this.” BULLSHIT. “God has a greater plan for Ronan.” Bullshit. “Ronan wants to go home, where he belongs, to Heaven.” MOTHER FUCKING BULLSHIT. Who the fuck came up with these sayings because the next person I hear say them to me is going to get punched in the face. They may be true if death is not outcome of this. But if it is, then I am going to write down those sayings on a piece of paper and burn them to the ground. Please think before you speak those words. They are the sickest things I have ever heard. Ronan Sean Thompson does not want to go home to heaven where he belongs. I can guarantee you with my life that he wants to stay at his home, in Phoenix, Arizona with the best mommy, daddy, and brothers alive.

I somehow stayed so strong today, even with people buzzing in and out, wiping the tears from their eyes. Stacy, Pam, Heidi, Tiffany, Jennifer, Sharon, Marcia, Auntie Karen, Sister Mary, Dr. Campbell, Katie, Macy, Sarah, Fernanda, Nana, Papa Jim, Aubrey….. they were all here. I think Niki, Heidi and Christy came by too, but I cannot remember seeing them. I smiled and remember saying to New York Miss Macy, “No tears, my dear.” She looked like she could have cried a pool of water right there in front of me. I’m so confused. I must be in shock still. I don’t remember much else about today except for sitting in bed, and taking care of Ronan. I remember a few people coming in and out. I remember eating my one thing that I have eaten in a week, my favorite things, chips and salsa and I remember throwing it up. I remember holding Quinn on my lap and watching him cry as I tried to explain to him as little as possible what was going on. He tried so hard to not cry, but I told him how crying was so good for us and how we cannot keep our feelings bottled up. And now I sit here. With Quinn and Woody inside, and Fernanda is here too with her overnight back so I can have a break and maybe sleep while she watches Ronan for me. I don’t really know what is going on. I know I have the most amazing friends surrounding me but somehow I can only find the courage to see a few faces.

I want to go home but nobody seems to think that’s a good idea. I don’t know what to do as the twins and the way they remember everything is the most important to me, but I also want to respect Ronan and take him home to be the only place he wants to be. I don’t know if I want strangers surrounding him if for some crazy reason he has to leave me. I just want him in my safe bed, in my safe house, the place he loves more than anywhere. I want that not only for myself, but for him as well. I’ve been so open and honest about everything and not the least bit private, but now I want to protect him from strangers hovering about. I don’t want those faces around my baby as he takes his last breaths. I feel a jailbreak coming on. And Ronan has his pistols in his hands to bust us out. Not that we would really need them, because I know the people here are so respectful of what you want to do. But a little cowboy action never hurt anyone.

That is all for tonight as I have officially lost my mind due to lack of sleep and oh, just the little fact that my son has cancer and I am just supposed to sit back and watch him die. FUCK YOU WORLD.

But I love you all as always, as long as you don’t say any of those idiotic things I mentioned above to me. Even if you think them, please don’t say them. They don’t give me strength at all. They even piss my husband off and it takes a lot to get him pissed.

G’nite all you cowboys out there. Sweet dreams.

xoxo

My sweet friend, Charisma sent this to me from her friend, Amber. I love it. Bittersweet. I love you, CC. I love you, Amber and I don’t even know you.

Ronan. Here’s a little prayer for Ronan,  beautiful eyes. Seeing the other side. Courage beyond any man.
He will be there. In the trees. In the leaves. It will make her live life, hate life, love life beyond…
Rebirth. Always more chances.
Those eyes. Those eyes. Those eyes.
Fabulous eyes.
We will light a candle at dinner for Ronan tonight and celebrate life.
~Amber

Life’s no way to treat an animal

It is with a heavy heart tonight that I tell you we are returning back to Phoenix. We came out here, full of hope; yet Woody and I both knew that it was going to be a tough road to travel. We met with Dr. Mosse about starting MIBG therapy to try to get Ronan’s disease under control; but with much sadness in her eyes she told us that this therapy would never cure Ronan or much less do anything for him. I knew this morning before we left the RMH for CHOP that there was little hope, as Ronan’s pain is getting much worse. I do not in the least regret coming out here. It was something that Woody and I, as parents had to do to make sure we could know in our hearts that we tried everything we could for our son. I believe it was a gift to have Dr. Mosse deliver this heartbreaking news to us, as I would not have wanted to hear it from anyone else. I cannot even express to you what an amazing woman she is and I am so thankful that she has had the chance to spend a little time with our son. I know she will work harder because of him and will one day, find a cure for this disease. After Dr. Mosse told us that the treatment would not work, Woody broke down and I went into complete shock. I could only focus on holding my husband, watching his tears, and just as he started crying, it started pouring rain outside. The rain only lasted about 5 minutes on this sunny Philly day. I know the reason for this rain.

The rest of today has been a blur. We have Ronan’s pain under control and are planning to head back to Phoenix on Friday. Woody and I have spent most of the day crying, talking, and whispering together. We have made promises to each other that we will keep. As Woody said, “Cancer will not take anything more from us than it already has.” It will not destroy our marriage, our family, our boys. We will take control over the things that we can. While Ronan has been awake today we have been very hush hush about everything, as he does not need to know that our hearts are broken. We have made phone calls to a few people, but that is about the extent of the phone calls today. All of this is just too much. Woody and I have both decided that we hate the saying, “Everything happens for a reason.” There is no reason for something like this.

We have some tough decisions to make yet I have no doubt that our little man will guide us though. We will do what is best for him and respect his body, his life, and his time. I have spent the entire night curled up next to him, singing to him, whispering sweet nothings in his ear, and kissing his little face. Ronan has filled my life with so much more love than I ever knew existed. The almost 4 years that I have had with him have been pure magic, bliss, and we have an unbelievable bond that will never be broken.The thought of being without him is eating at my soul, as he is the best thing that has ever been mine. I don’t know how I am going to go on without him but I have a feeling my twin 7 year olds will be great helpers. They deserve the best life possible after living through this nightmare and Woody and I are determined to give it to them.

I am not brave, strong, or fearless anymore. I am just a mom. A mom to the most beautiful boy that was put on this planet and whom I will think about every minute of everyday for the rest of my life. Being his mom, was the best thing that I have ever done and will ever do.

Tonight, I asked to speak with Dr. Mosse one more time. We went alone in a room and I told her, as a mom, I had to know in my heart that I had done absolutely everything possible for Ronan. She told me I had done that and more. I begged for clinical trials, asked about things I had heard about in Germany, Canada, homeopathic hospitals…. asked for anything. She told me if there were anything, she would have done it for us. I asked if we made mistakes on the choices we made as far as his treatment went. She said absolutely not, and that we couldn’t look back. His disease is everywhere and spreading so rapidly that the best thing we can do now is just love him like we’ve never loved him before. I cried to her, asked a few more questions, and thanked her for her compassion and grace.

There are not enough drugs in the world to knock me out or make me numb to this. Nor would I take them if there were. As of now, you know I am still hoping for a miracle and not giving up. I will never give up on Ronan but I will respect him and his life. He is going to lead me to where he needs to go, when it is his time. I, as his mother, could not ask for a braver soul to surround me at this time. I will not leave his side until he is ready for me to go.

Please continue to pray for Ronan and our family. Please don’t take anything in your life for granted. And please don’t send any mother fucking flowers. I told Fernanda tonight, if anybody sends me flowers, I will lose it. If you feel compelled to do anything, send a card, write on my blog, spread around Ronan’s story, ask for prayers, donate blood or platelets, or donate to his foundation. I will do something amazing with the money we are raising and I know it will come to me when the time is right.

Thank you to all of our friends and family who did not disappear during this time and who chose to surround us with the love that we so need. Thank you to all of you who love our baby even without knowing him. I am so thankful for all of our nurses and doctors who have stood by our side and who continue to do so. Please send us your strength to get though this. We are a strong family, but we are about to walk through HELL, even more so than the past 8 months. We have to come out the other side.

Love you all,

xoxo

THE CHOSEN MOTHERS

By Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit.

Did you ever wonder how mothers of children with life threatening illnesses are chosen?

Somehow, I visualize God hovering over Earth selecting His instruments for propagation with great care and deliberation.

As He observes, He instructs His angels to make notes in a giant ledger.

“Armstrong, Beth, son, patron saint Matthew. Forrest, Marjorie, daughter, patron saint Cecilia. Rutledge, Carrie, twins, patron saint Gerard.”

Finally, He passes a name to an angel and says, “Give her a child with cancer.” The angel is curious. “Why this one God? She’s so happy.”

“Exactly” smiles God, “Could I give a child with cancer a mother who does not know laughter? That would be cruel.”

“But, does she have patience?” asks the angel.

“I don’t want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she will handle it.”

“But, Lord, I don’t think she believes in you.” No matter, I can fix that. This one is perfect. She has just enough selfishness.”

The angel gasps -“Selfishness? is that a virtue?”

God nods. “If she can’t separate herself from the child occasionally, she’ll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn’t realize it yet, but she is to be envied. She will never take anything her child does for granted. She will never consider a single step ordinary. I will permit her to see clearly the things I see…ignorance, cruelty, prejudice…and allow her to rise above them.” She will never be alone. I will be at her side every minute of every day of her life, because she is doing my work as surely as if she is here by my side.”

The whole Thompson Family takes NYC!

Writing from my iPhone so hang in there peeps!!

I cannot tell you how good it feels to have my family here. It has made such a difference in everything. The happiness that Liam and Quinn bring to all of our lives is so infectious and the way that my 3 boys love each other is unlike anything I’ve ever seen in my life. I am so grateful for my in-laws for making the trip out here to bring the boys’ to us so we can all be together as a family. We are happy, peaceful, and enjoying every second we have together to the fullest.

We spent today enjoying the sunny NYC weather, even though it was still cold out; it was beautiful. We walked to Central Park and then over to The National History Museum. Ronan was able to get up and out a little bit, but nothing like before all of his pain. I pushed him in his stroller or carried him. His arm is still hurting him badly, but he seems to be in less pain and is trying to use it more. I bet it will be a good month or so before it is fully healed. I am just thankful for every new day, as it means his arm is healing more and I know he will soon be back to his old self. His spunk and spirit has not diminished at all, especially with his brothers here. He is just as feisty as ever which makes for a very happy mama.

Last night I had the chance to speak with Liam and Quinn’s first grade teacher, whom I adore. She has been so amazing to us this year with everything that is going on and I wanted to update her on our latest plan. She was very supportive of our decision to bring the boys’ out here so we could spend some time together. She gave me such peace of mind by telling me how well the twins are doing in school and what kind, good boys they are. It is such a weight off my shoulders to know that they are doing so well. It just shows how much the love that surrounds them and us is paying off. Even though their little lives have been turned upside down, it does not seem to be affecting them in school in the least bit. I could not be prouder of my two sweet boys. They are so tough and going through something like this is only going to make them out to be the best of men when they are older. They are learning the importance of family, being strong, and love. How when you stick together, you can get through anything…… no matter how hard or awful it may be. I am not pleased that they are learning these lessons this way, but I am determined to find some sort of beauty in the lessons that no sibling should have to learn.

I am just going to touch on the “Nurse Christine” ordeal for a few minutes on here, because I feel as if it needs to be addressed. I realized that when I started this blog…. I was putting myself out there, to everyone; crazies included, but it was a chance I was willing to take. Many times in the past, this person has written nasty comments on my blog but I have been able to catch them just in time to put them to spam. One of my reasons in doing so, was because I wanted to protect all of you from wasting your time and energy on this horrible person. I apologize to all of you for not catching her comments sooner, as I have been so busy that I have not had time to read anybody’s comments until this evening. When I saw the uproar, I had no idea what it was in regards to, until I backtracked to find that this person had used a different, but somewhat similar email to post something utterly disgusting, once again. I put her comment to spam again, but apparently there were a lot more comments made. I have erased them all as best I can, but I know there is only so much I can do. Everyone is not going to be a fan of mine and that is fine. But to not be a fan of our family who is fighting so hard for the life of our baby boy, and to say things like we’d better prepare ourselves for his death is just sick and twisted. We know what we are up against. We do not think we are better than anyone else and I’m sorry if my pretty much perfect life before this has offended you. We are good people, with good hearts, who work hard for what we have and the life that we live. I truly believe that Ronan was chosen for this path to make a difference in the world and his story will have a positive outcome. Those of you who know my son, you know that he is special beyond belief and there is a very good reason for all of this. To all the Nurse Christine Crazies out there who probably live alone, with 25 cats, and star on the A&E show, “Hoarders,” you need to go elsewhere. Your negativity and bad “juju” is not going to get me down. I pity you and you just make me feel sorry for you. In the words of my husband, you are just a bad person. The one thing I did learn through
all of this though, which I already knew before, is how badass Ronan’s fan club is. You all had me in stitches with your words and how fired up you were. After such a crummy few days, it was so nice to be laughing out loud again. I couldn’t be prouder to have you all as Rockstar Fans and family. You all melt my heart. One last thing to “Nurse Christine.” Your 15 minutes are up my love….. my 15 minutes will be up when there is a cure for Neuroblastoma and I will not stop until then. You need to go find a hobby, join a Bullies Anonymous Group, and go get some intense therapy. Your negativity is not welcome here.

I hope you are all having a beautiful weekend full of the love and beauty that you deserve. I hope you find a hundred things a day that you are thankful for will continue to spread your love around in your day to day lives. Thank you for sharing it with me daily by keeping us in your thoughts and prayers. I am beyond blessed to have you all on our side!!!

xoxo

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Not following the yellow brick road

HAPPY VALENTINE’S DAY! RO, MAMA, AND NANA WENT FOR PEDICURES!!!!

I wish I could tell you all that I have not updated my blog for a few days because I have been so busy soaking up all of my precious time with my amazing family. That we have had such a fun filled, fantastic weekend full of no worries whatsoever. But, that is not the case. The weekend started out that way. We left PCH on Friday happy as clams, ready for transplant and for a great weekend. We took Ronan on Saturday to the twins’ basketball game and had a wonderful time. Afterwords, I came home with Ro and my mom and we were playing outside in the backyard enjoying the sunshine and warmth of the day. 30 minutes later Woody arrived, came storming outside, demanding that he needed to have a serious conversation with me and needed to have it now. My stomach instantly dropped, my heart fell to the floor and I knew something was wrong. He said he had just gotten off a lengthy phone call with Dr. Eshun and they had done the randomization for one stem cell transplant or two. We were randomized for one. I knew this before Woody even told me. Woody had asked me 3 days prior to this if I thought we were getting one transplant or two. I looked him dead in the eye and said, “One.” He goes, “How do you know?” I told him I just had a feeling. This is not the news we were hoping for. My head started spinning and it was as if we were right back to where we started, at day one of Ronan’s diagnoses. Although Ronan has made great progress, Woody and I have done enough research to know that not enough of his disease is gone for us to go ahead with just one transplant. This cancer is too strong. I spent all of Saturday crying my eyes out, trying to wrap my head around all of this, and Woody went straight into Woody mode and armed himself with as much information as possible as far as other alternatives. He figured out who we needed to call today to get answers from. He has spoken with several doctors from New York, San Francisco, Chicago, and Atlanta. Time is not on our side and time is not our friend.

The one thing that every doctor that Woody has talked to, cannot figure out is why is Ronan’s Bone scan is negative, his Bone Marrow clean, his VMA (urine test) is negative, yet he has so many spots left on the MIBG scan. Dr. Kusher believes that the Neuroblastoma, is still in Ronan’s bone marrow, not his bones. We are at a crossroads with what to do and are looking at basically two different options. As of now, we are deciding between an MIBG therapy in San Francisco or heading to Sloan Kettering to start 3F8. As soon as we heard that  Ronan had only been randomized for one stem cell transplant, we pulled him off the COG study we have had him on. There is no point in following their rules anymore. Although Ronan’s path is not clear, I have no doubt that we will find our way through this maze. I keep telling myself that Ronan is so unique and such a special little boy, that he was not meant to follow the yellow brick road on this journey. He was meant to make his own road full of yellow, purple, red, green and every other color you can possibly think of. Maybe this is a blessing in disguise because Ronan was not meant to have a transplant at all as it wasn’t the right answer. I have felt uneasy about his whole transplant thing from the beginning. I know what my heart and gut are telling me what the right answer is… but I think it is going to be a day or two until the answer is 100% clear. Woody and I are doing everything possible, with the help of my dear Fernanda who has been a godsend, to find out what all of our options are. We are still meeting with our transplant doctor tomorrow, Dr. Adams, but we will not be starting transplant on Thursday like we had originally planned. Just goes to show you how tricky this disease is and you really can’t ever prepare for anything. Talk about having the rug pulled out from underneath you. I told you Ronan was a rule breaker…. I really believe he was not meant to follow this protocol…. he is going to make his own.

I was a mess this weekend but tried to go on with some normal things we had planned. On Saturday night, Woody and I went over to Tricia and Max’s house with our friends, Danielle and Jay. We had fun, but I told Trish the next day, you know your in a bad place when not even Danielle’s toxic margaritas can mask your pain. We came home from Tricia’s around 1 a.m. and I tossed and turned the entire night. On Sunday, I had a dinner planned with some of my girlfriends and I refused to cancel. I joined Jen, Stacy, Jocelyn, Fernanda, Gay, Heidi, Bethany, Shelby, and Melissa, for a very special dinner that was supposed to be my “sending off” into isolation, but turned out to be, o.k…..here is the new news and what we are facing…now what the fuck are we supposed to do??  I tried my best to enjoy myself and when you are surround by the most beautiful women in the world, it is impossible to not enjoy yourself. I had to let go just a little bit and I have to trust in this new plan that is going to present itself. I texted my Mr. Sparkly eyes today and told him that decisions are begin made for us and we just have to trust. He believes this too, there is something bigger than us guiding us in the direction we need to go. I truly believe this with all of my heart.

What I am asking from all of you is just your continued prayers and love and your belief that we will make the right decision for our baby boy. Whatever path we choose, or whatever path chooses us, there is no looking back. We refuse to second guess anything we have done or are going to do. To live like that is foolish and we are very aware of that.

Hopefully by tomorrow, we will have a clearer vision of what we are doing as we need to get Ronan started on his next treatment as soon as possible. As far as Ronan goes, he could not be happier. He has been loving being at home with his brothers and playing outside. He looks amazing and his spirits could not be better. I am reminded everyday by looking at him what a gift he is as well as Liam, Quinn, and Woody. I am such a blessed mama and wife.

Please, no tears for us yet. Trust me, I’ve done enough crying the past few days for each and every one of you. This is a blessing in disguise. It HAS to be.

Yoga, Hiking, and Tears

What a busy, yet peaceful day. I started off my day joining my friend, Stacy, for a hot yoga class. An hour and 15 minute class where I was drenched in sweat and tears almost the entire time. I have not done a yoga class in years, but it has been something I have dying to get back into. It was almost too much… intensity wise. I felt broken, vulnerable, sad, yet strong and calm too. Stacy looked over at me at one point while we were standing up doing our poses and saw the tears pouring out of my eyes. She came over and held me for a minute and then asked if I needed water. She then goes, “What about Coconut Water? I have some!?” She made me laugh out loud at that one. Ah yes, Coconut Water makes everything all better. We had some after Yoga and it was the best Coconut Water that I’ve ever had in my life;) Thank you Stacy for the yoga today… I really hope to get a bunch of these classes in before we start isolation. It is a good way for me to let everything go and release all of the things I am feeling.

After yoga, I came home showered and got ready to head over to The Village for Liam and Quinn’s basketball game. I took Ronan with me. He was in heaven and spend a lot of the time helping Woody coach. He even had his own whistle hanging around his neck. It was adorable and he loved being out with his brothers. Liam and Quinn did great as always. They are such good little basketball players. Watching them play basketball is one of my favorite things to do in life. I am so thankful I was able to go today; it meant a lot to all of us.

After basketball we came home and I took a long nap. I think the hot yoga and all the crying I did this morning did me in and I had a bad headache the entire day. I felt better after I woke up and around 5 I headed out to church, a.k.a. hiking. I needed an active day today. It has been way too long since I’ve been in touch with nature and hiking is something that I have been missing so much. I ran up the mountain, watched the sunset, and prayed my ass off. It was one of the most gorgeous evenings tonight and hiking always clears my head. Today was absolutely perfect in every way.

The boys’ have their cousin, Luke, staying the night tonight. He is a fifth grader at their school and all three of my guys idolize him. Woody took them to play basketball at The Village and then to pizza tonight. If my boys’ turn out to be anything like Luke, I will feel like the most blessed mama in the world. He is a parents dream come true. Such a sweet soul, funny, and is so good with all of my boys’ but especially Ronan. We love having him here and spending time with him. I think it is really good for Liam and Quinn; it is good for them to have somebody to look up to who is a little closer to their age. Thanks Heidi for letting us borrow your Lukey. We love him like one of our own:)

Tomorrow we are having another low key day. I’m going to breakfast with a few girlfriends to go over isolation things in the morning and then we are planning on watching the Superbowl over at Uncle Jay’s house. He lives right around the corner so if Ronan gets too tired, I can just walk him home. I may try to sneak in another hike before my insanely busy week starts. My body is already beyond sore and it is a feeling that I miss so much. Before all of this exercise was my stress relief. It’s hard not to have the consistency of that in my life anymore as I don’t have any other outlets. I’ve got to make the most of these couple of weeks before transplant.

Ronan is curled up beside me. Luke has been in my room reading him some books and cuddling up with him. So cute… he loves to love on Ronan. It has been such a nice family night at home tonight.  We have really been needing this time together. I’m finally getting a little sleepy so time to shut things off. Hope you all had a great Saturday; thanks for checking in with us. Sweet dreams!!

xoxo

The silence scares me because it screams the truth

A week. It’s been a week of sharing a room. Hospital beds. Hospital clothes. Hospital T.V. Hospital seconds/minutes/days/nights. Hospital tears. Hospital depression. Being home last night for the entire night with my twins felt so good that it hurt. I took them to breakfast this morning and we looked just like the perfect little family. Just another mom with her sons’ on a gorgeous Sunday morning, happy, smiling, laughing. Nobody in the restaurant knew the reality of my life. They didn’t know that soon my horse-drawn carriage was about to turn into a pumpkin. They didn’t know about the 3-year-old that I have with cancer who was waiting in his hospital bed for his mom to return. That’s my reality everyday and nobody knows the pain and sadness that comes with it. It hits me hard during times like this… when I get a second of my sweet life back and then have it ripped away from me once again. I fucking hate hospitals. I fucking hate RSV season. I fucking hate cancer and all the time it is stealing away from my family life. How lovely that I was able to go home last night and spend 30 minutes with my husband and try to act normal the way a husband and a wife do, but then that turns into him saying to me while looking at an old picture of our 3 boys… “I just keep thinking, did he have cancer then? Fuck. How long has he had this?” That in turn makes me cry and I get to sit and stare into my husbands eyes as he watches me cry because some days are harder than others. Today is one of those days. Do you know why my little 7-year-old who was exhausted from the days events stayed up until midnight  with me last night insisting we finish watching “Talladega Nights?”  He told me he didn’t want to go to sleep because he didn’t want the time with me to end. I couldn’t agree more and he is so right in the way he is feeling. Just pile that on top of the things that are ripping my heart out at the moment and smashing it on the floor.

Today, I couldn’t pull my shit together and had to have my friend, Gay, come and sit with Ronan so I could get out of the hospital for an hour and cry my freaking eyes out. The tears wouldn’t stop pouring and I thought getting out of the hospital would help; but it didn’t. It’s was one of those day. Bloody, bloody, Sunday.  Sarah the Saint stayed with Liam and Quinn all day today so I could come back to the hospital and Woody could go to the office and work for the entire day. Ronan has been a handful with a lot of energy, but is still not wanting to leave his room. He keeps talking about going home and wants to know why he can’t because he says he is all better. I try my hardest to explain things to him as simply as possible but he doesn’t get it. None of this makes sense to him and it shouldn’t.

We still have our baby roommate, with no parents in sight. The nurses have been working non-stop tending to him. The second they try to put him in his crib, he starts to cry and will not stop. Poor thing. All he wants is to be held. Makes me sick to my stomach. Reminds me to be thankful. Thankful. Thankful. Thankful. Things could be so much worse. Ronan’s counts were still around 50 today. The same as yesterday. They have got to be higher tomorrow… I don’t expect a major jump, but in the low 100’s would be nice. We just want to go home. We have isolation coming up soon and this is cutting into our time with Liam, Quinn, and Woody.

I’m being rotten tonight and I know it. Time for a positive attitude adjustment. I feel better after my day of tears. Guess I just needed to clear my head and let some things out. I’m going to snuggle up with Ro now and do my favorite nighttime activity which is to watch him sleep and wonder what that sweet little soul is dreaming about. I hope only beautiful things. G’nite dear angels out there. Thank you Sarah and Gay for your help today. I don’t know what I would do without you two. Love you.

xoxo

Update One…. kind of a generic one

One of the nurses that comes out into the waiting room to give everyone updates, came to see us. She said Ronan went to sleep beautifully, they have started, and he is going great. I think she saw what a wreck I was so she put us back in a private room to wait.

I just listened to my 15 voicemails from today and you all made me cry…. Niki, Charisma, Lindsey, Gay, Stacy, Marisa, Susie…. I love you all so much. All of your words are were beautiful. I am so thankful for my dear friends and all the strength you all have. Also, my text messaging, blog, and FB friends…. thank you for letting us know you are here with us today. We know you are, Ronan knows you are, and we think of you ALL as angels surrounding him. I never knew so much love existed in the world. Thank you all for showing it to me.

Mess with the bull, you get the horns!

Tonight is the eve of my babies surgery. I know it is a
very good thing that tomorrow is here; but I am still filled with
an overwhelming amount of anxiety, anger, sadness, sorrow, etc…
basicially I have been through about every emotion one can feel
today. We have been waiting so long for tomorrow to come; and now
that it is almost here… I don’t even know what to do with myself. I
won’t be o.k. until I hear the words that Ronan is out of surgery
and he is doing fine. Until then, I am going to be a wreck. I will
find the strength to keep it together as much as possible tomorrow,
but it is going to be a very hard day. I spent this morning with
Ronan, doing our usual things. We went downstairs and I made him
breakfast. We came back upstairs and finished watching “Despicible
Me” from last night. We then all got ready for the day. I had to
laugh at Woody today at a comment he made to me. I was just getting
out of the shower sans no make-up… he looked at me and goes,
“What’s going on with the dark circles under your eyes? “When did
that happen?” I tried my best not to punch him, and just calmly
told him that they have been there for a few weeks now. He tried to
argue with me and told me that they have not; and I then told him,
yes they have and thank god for make-up. Without it, I look like
somebody has given me two black eyes. I’ve never dealt with the
issues of black circles under my eyes before and I thought it was
funny that he just now noticed today. Looking in the mirror anymore
is weird for me… I look different and my eyes definitely tell the
story. I have been laughing about this all day, because for some
strange reason it is funny to me. I’ll take any kind of humor I can
get right about now. After we got ready, Woody sent me out to get
the pedicure he put in my stocking for Christmas. It was so nice to
get out and go pamper myself a little bit. I got a dark purple
color for Ronan of course. New York was cold and dizzily today and
I quite enjoyed my walk. As I was leaving the pedicure place, I was
in the middle of texting my friend, whom I’m calling, Mr.Sparkly Eyes, to please keep Ronan in his prayers tonight and
tomorrow, which I know he always does, but I said something along
the lines of, “you know I have my issues with God, but I’m asking
for anything at this point.” (and please, no snarky comments here,
I have a right to be mad and questioning everything) As soon as I
texted him those words, I passed a small Catholic Church with the
Fleur De Lis symbol on the outside of it. The Fleur De Lis has kind
of become a family symbol of ours. I walked past the church and
then immediately turned around and went inside. It was empty and I
walked right up to the front and sat down. As soon as I did this I
started crying and sat and cried for a good 30 minutes. I cried, I
prayed, I begged, I asked questions and I cried some more. It was
so peaceful inside and I felt such a sense of comfort and warmth. I
lit 3 candles inside that church tonight. One for Ronan, one for
Jack Morton, and one for Mia Foutz. I said prayers for all of them.
I then left the church but not before I filled it with about 50 of
Ronan’s little cards with his picture and story on it. It’s been
about 16 years since I’ve been inside of a church to pray. It was
just what I needed and exactly where I needed to be tonight. I
haven’t talked to anyone really today, besides my friend, Pamela
White. I have kind of gone into hiding today… so sorry to my
friends…I’m a little too weak to talk right now. I needed to talk
to Pam tonight and that was all. I needed her because she has been
exactly where I am standing, litterely. It was her voice that I
needed to hear, the comfort in her voice, and her advice. She
talked, I listened, I cried, and I believed in every word she was
saying. She told me there was no way to prepare for tomorrow, and
told me no day will ever be as bad as the day Ronan was diagnosed.
She is so right. Nothing in my life, so far, will ever be as bad as
that day. Woody keeps telling me tomorrow is the biggest day of our
life and he is right. He also has been so great about sending me
text messages telling me how Ronan can do this, how he is so much
stronger than every other kid. He is so great about doing things
like this… I tend to go into shut down mode and push everyone away.
I just want tomorrow to be over and Ronan to be o.k. I want that
fucking tumor out of his abdomen. We have to be at the hospital at
7 a.m. East Coast time. Ronan is not scheduled for surgery until
10:50 a.m,, but he may be going in earlier depending on how the
morning goes. I will keep you all posted as best I can and I am so
thankful for all of your prayers and how much you will be thinking
of him/us. Thank you all for your messages today, via text,
facebook, phonecalls, emails, etc…. They mean so much to me. I got
a really sweet one from my friend Shelby that I am going to share.
Thanks for this tonight, Shelby, I really needed this.
I wish you a couple of hours of sleep
tonight and a smooth day tomorrow. Your family has been on my mind
on day. I took you to yoga with me tonight and turned my practice
over to you. My teacher pulled off his shirt mid class (yeah!) and
he had a beautiful tattoo that said “this too shall pass”…just
like yours. I take it all as a sign and I know that you will take a
huge jump in your goal to kick cancer’s ass tomorrow when you get
it all out of your baby. Blessings and strength mama!
Shelby My friend, Noelle, also reminded
me tonight that Ronan is a Taurus. A stubborn bull who is
determined to win! He will win, he will fly through this surgery
with such strength and determination. He is our fighter, our hero,
our Rockstar! Nothing is going to stand in his way. Let’s get this
freaking show on the road already. So, I am asking that you keep Ro
and all of his doctors in your prayers tomorrow. Dr. LaQuaglia,
especially as well. He is beyond blessed at what he does and I have
complete faith in him. He is going to save our baby. Sleep well
tonight and I hope your dreams are filled with images of Ronan. I
am leaving you tonight with a beautiful picture of a butterfly. To
me, butterfly’s represent a rebirth…. a shedding of their cocoon
only to be reborn as something even more beautiful than before.
After tomorrow, Ronan will be reborn and free of the mass in his
abdomen. A new, fresh start for him. The rebirth of our baby boy. I
love you all and I promise to update you as soon as we hear
anything tomorrow. xoxo

Sometimes I’ve believed as many as six impossible things before breakfast

I feel a little like Alice in Wonderland. A little lost, scared, curious, brave, hopeful, determined, a champion, a dreamer and strong. A little like the Mad Hatter too. Crazy, funny, smart, and zany. And the White Queen, confident, gracious, and sassy. I relate to so many of these characters in this movie. I feel like I am Alice, living a crazy dream, and I just can’t wake up. I haven’t cried in a few days, which is rare. I hope all of these drugs are not numbing me too much. I want to feel things… but I also don’t want to feel too much or else I won’t be able to function. These past few days I have been looking at Ronan and just feeling happy and extremely lucky to be able to spend so much time with him. His spirits have been great. He is so feisty and has been cracking me up. Last night, Liam and Quinn were in the shower and Ronan kept running in there and throwing things on them. I was trying to get him to stop but he of course was not listening. I did my pretend Woody call, which is sometimes what I do when Woody is not here, and sometimes it works and Ronan stops the naughty things he is doing. Last night when all that was happening, I yelled out, “Woooooody!” Ronan looked me dead in the eye and goes, “Woody’s not here.” I died laughing. Liam and Quinn were hysterical with laughter. It was so funny and smart of him. He has so much mischief and fire inside of him. It keeps me on my toes and I love every second of it. He is so strong and brave. He is my hero.

So, since we won’t be in the hospital for Thanksgiving, we will be spending it with our dear friends, The Kotaliks and Mimi and Papa. It is going to be the best Thanksgiving ever. We have so many things to be thankful for this year. Just to be able to be together as a family is a huge blessing. We will hopefully start his chemo on Monday. Woody is devastated that we have had a little set back but Ronan’s body needs to fully recover from the last round to start this next round. I have faith that everything happens for a reason and it will all work out. It just has to; we have come too far with all of this.

My mom and Jim will be coming out on the 1st of December for a visit. My mom is so nervous because of the way I flipped out on her the last time she was here. I keep reassuring her that I will be fine this time…. I’m on medication for crying out loud and I know that is helping. We are surprising the boys’ and not telling them that Papa Jim is coming too. They will be so thrilled. It will be nice to have both my mom and Jim here. I have a very special bond with my step-dad… I love him to pieces and feel so lucky that my mom married him when I was 13. He is the greatest man.

That’s all for tonight. Looking forward to a very peaceful weekend with some very special friends coming into town for a visit on Saturday. I am so excited about that. It has been much too long since I have seen this dear friend of mine. Planning on a fun Saturday night and taking her and a few other girls to Chelsea’s Kitchen for dinner. It is going to be a very special evening to say the least.

Happy Thanksgiving to you all tomorrow if I don’t get to check in. I am thankful, always, everyday for all of the blessings in my life. Love to you all, my friends.

xoxo

We live in a beautiful world

What a beautiful day. Today was filled with such beauty I almost don’t even know where to start. First, I just want to say that our prayers of finding a private plane to get us to and from New York City have been answered. I can’t believe all of the responses I got today from people who were more than willing to help us out. We can now breathe a big sigh of relief thanks to some very special people. Also, I got a call from somebody that I don’t even know today, whom I am just calling, S. She offered to let our family use their jet to get us to NYC and was so gracious and happy to help. We have decided to go with a bigger corporation, but I just want to say a special thank you to this family for stepping up and offering to help us. They don’t want to be recognized in any way… and that right there speaks volumes about the type of people they are. S, I cannot wait for the day I get to meet you and give you the biggest hug in the world. You are an angel and I will never forget your kindness and generosity that came from the truest place of all; your heart. So, thank you again; You and your family will forever have a special place in my heart.

I spent the day at home with Ronan and I actually got to cook dinner. That in itself was such a treat. I have always loved to cook and I was so excited to spend the day doing so. Ronan helped me add the ingredients to my beef stew; and loved every second of helping me. Woody was so happy to have a meal that I had cooked myself. He even told me he thinks it was one of the best things I have ever made. That made my night. After Wood came home and we sat and had dinner I put on my running shoes and headed out in the dark, cold night. Oh my goodness. I am so happy that running has found it’s way back into my heart. Geez, all it took was my little guy getting cancer. Sad but true. After I ran the NYC marathon a couple of years ago I started up the “I hate running club.” I have been a member of this club ever since completing that marathon. Well, now I am happy to say, I no longer belong to this club. Before all of this, I would have never ran in the dark alone. Now, I don’t care at all. It’s like I have nothing to be afraid of because all of those fears that I had before were so silly. I know what real fear is now and it is so much bigger than running in the dark. I blasted my music, ran so hard and so fast for a good hour. My calves burned, my chest burned, and it felt good. I thought of so many things during my run. I kept telling myself, every time my feet hit the pavement, it was one step closer to getting Ronan well. I pictured so many of my family and friends on Thanksgiving…. and imagined them all being happy and thankful this year. I know you all are going to be thankful for so much more than normal. I am happy to be able to give that gift to you. It makes me happy to think of all of you and all the beauty you have in your lives. It gives me peace. I thought a lot about New York and getting that fucking tumor out of Ronan’s abdomen. I can’t wait to just get it out of him. I am going to ask for it too. Call me crazy, but I want to see that thing. I am obsessed. I hope the doctors will agree; not sure if it’s something they will be o.k. with but I am going to ask. I thought a lot about all of the medication I am on now. I would like to say a big fat thank you for the inventors of Zoloft, Xanex, and Clonazepam. I never thought I would be one of those “people,” but I am and I am not ashamed. I am thankful that about a month after being in all of this, that I knew I needed help when I found myself locked in Ronan’s dark closest rocking back and fourth crying my eyes out. I am thankful that I was brave enough to admit that I needed something to help me get though this. So thank you, Zoloft for keeping me more steady and even keeled. I can now actually go into a grocery store and not flip out. I have not taken the Xanex yet…. saving that for when I really need it. And Mr. Clonazepam. I can finally sleep at night; peacefully. Before Mr. Clonazepam, I was lucky to get 2-3 hours of sleep a night. That in itself was enough to make me crazy. Sleep deprivation can really mess with your mind. I feel a little bit like the old Maya. A girl who used to be crazy strong and could have ruled the world. I need her back to get Ronan through this, and if it takes being on this stuff for a while, then so be it.

Ronan is going to beat this. There is no doubt in my mind. Tonight, he was jumping off of the ladder to Liam and Quinn’s bunk bed onto the ground into a pile of pillows below. And your telling me this kid has stage 4 cancer? It’s crazy to me. Nothing can stop him and his spirit. He must have told me 50 times today how much he loves me. We had a great, fun day together. Tomorrow, we will go to the clinic to have his levels checked. Praying that he can start his chemo tomorrow. It’s time to get this show on the road, people!

Sweet dreams to you all my dear friends. Please never forget how beautiful this life is; even during what seems like the darkest hours. I am so thankful for all of you<3

This is from my sweet friend, Jen… beautiful song and beautiful lyrics. Thanks baby.
Rascal Flatts – I Won’t Let Go Lyrics

It’s like a storm
That cuts a path
It’s breaks your will
It feels like that

You think your lost
But your not lost on your own
Your not alone
I will stand by you
I will help you through
When you’ve done all you can do
If you can’t cope
I will dry your eyes
I will fight your fight
I will hold you tight
And I wont let go

It hurts my heart
To see you cry
I know it’s dark
This part of life
Oh it finds us all
And we’re too small
To stop the rain
Oh but when it rains

I will stand by you
I will help you through
When you’ve done all you can do
And you can’t cope
I will dry your eyes
I will fight your fight
I will hold you tight

And I wont let you fall
Don’t be afraid to fall
I’m right here to catch you
I wont let you down
It wont get you down
Your gonna make it
Yea I know you can make it

Cause I will stand by you
I will help you through
When you’ve done all you can do
And you can’t cope
And I will dry your eyes
I will fight your fight
I will hold you tight
And I wont let go
Oh I’m gonna hold you
And I wont let go
Wont let you go
No I wont