Music to my ears

I’m feeling peaceful tonight. Today, was a very good day in terms of victories for Ronan. It started off with his little words this morning, “Mom, I have to poop.” Praise the freaking lord. It’s been 5 days of him not pooping and we have been giving him Miralax around the clock. I full on had a pooping party dance after my little man did his job. Victory! He was up most of the day, although still in a lot of pain. This morning, our sweet, “A,” from the clinic came by. She sat with us for a while and Ronan normally kicks everyone out, but he was so calm while she was here. He connects with her. Playroom Kathy from PCH also came by with so many Star Wars toys and the most beautiful Star Wars quilt which I am assuming she made. Kathy, it is so gorgeous. Ronan has been playing with his Star Wars guys on it all day. Love you so much. Thank you for sharing your smile with me today. I’m only sorry Ro missed it due to him sleeping. My sweet friend, Kristen, Kati, and Olivia came by as well. It was good to see them all. The usual peeps were here too. My mom, Jim, Luke, Heidi, Liam, Mimi, Papa, Auntie Karen, Trish, Stacy, Fernanda, Gay, and Pam. Christy and Heidi stopped by too with a ton of food. I’m feeling a little braver about seeing people so I ventured outside of our room. Ronan is so loved. I’ve never seen so much love for one little boy in my entire life. It makes me feel so happy.

We have been talking to Dr. Sholler about some other treatment options. I told you we are exhausting anything possible. We are talking about doing radiation on his leg. I’m not giving up yet if there is even the smallest amount of hope. I won’t travel far with him, but if this doctor is willing to see us in San Diego, we are talking about making the trip. We may start radiation tomorrow on his leg. Anything to help him with his pain. We are not committing to anything yet, as we know what the odds are. But we are not willing to close the door just yet. Ronan wants to be here with us and we are going to continue to fight hard for him until he lets us know otherwise. I will know, as his mama, when it is time to let go. It’s not time yet.

I got out for a bit tonight. I was nervous about it but Woody insisted it was fine. I had the chance to call back a couple of people. My angel, Charisma, is flying in this weekend for a quick visit even though she is bombarded with auditions. YAY FOR THAT!!!! Both her coming, and the auditions that are coming her way. I cannot wait to see her and am so grateful that she knows how much it means to me to see her. I called back my other dear friend, Susie, who lives in Colorado. All I had to do was say the words and she is now coming in for a quick visit this weekend as well. I don’t know how much time we have left with Ronan. Could be days, weeks, months….. praying for forever. Regardless, it means a lot to me to have those two see him. It will be good for me as well. It felt good to be out, tonight, breathing in the fresh air, as I sat outside with my dear friend who brings me much peace and comfort. I even managed to eat a taco for him.

I came back to the Ryan house and Ronan has just finished his platelet transfusion. Luke and Quinn were in the room with him and we all sat around together while Luke played music from my iPad for Ronan. Luke was being his normal, very animated self, and was singing and dancing out loud. I could not believe my ears when I heard giggles coming from Ronan. He has not laughed in at least a week. It was all thanks to Luke. I about started bawling. My baby boy is still in there. As much as he is hurting, he so badly wants to come back to us. I heard it in his laugh tonight. I will never forget that moment. Luke has been such a gift to us during this time. He brings our family so much happiness, especially Ronan. He is sleeping over at The Ryan House tonight, as well as the twins. We all need to be together as much as possible.

I’m tired tonight and as I said, I’m feeling somewhat peaceful. I’m going to try to get a little bit of sleep before Dr. Maze and everyone else kicks my ass. I’m not taking my sleeping medicine anymore, but tonight I feel like I can maybe sleep without them.

Somebody posted me this comment on my blog tonight. Loved it and wanted to share. Thank you, friend whom I do not know.

I read your latest blog “the next person that tells me…” I just want to say Sorry for those of us that are inconsiderate with our words and try to say things to make us feel better before we think of how they may affect you. I share your blogs on my facebook and ask my friends to pray for you. I wear a bracelet daily so when I see it I remember to pray for you often. My heart aches for you. My sister recently lost her granddaughter and posted this comment about people speaking, I thought you would appreciate it. She added your comment to her previous post to reiterate the impact of commenting before we think about it.

Before you speak…
by Connie Phelan Iddings on Tuesday, May 3, 2011 at 12:00pm
“Everything happens for a reason.You were given this because you were strong enough to handle this. God has a greater plan for your child. Your child wants to go home, where he belongs in Heaven, so just let him go. At least you had as long as you did with her and you have other grandchildren, at least you can be grateful for that. You’ll be a better, stronger person because of all of this. ”

These are comments given to a Mother whose child is battling for his life and to other Mother’s and Grandmother’s who have lost their babies.

Think about it. Seriously. Stop and think about it. To a Mom and to a Grandma, there simply does not exist any justifiable “reason” for our babies to suffer and die.

I am sure that God is taking care of our babes, but when you say God had a better plan, what exactly are you implying? That we somehow didn’t deserve our children-our parenting plan didn’t suffice while millions of others did? That God handpicked our babies to pluck out of our arms because he had a better plan? God is not cruel. His plan is to bless and not to harm us. (Jeremiah 29:11) I’m pretty sure it had very little to do with “God’s perfect plan.” I like how William P. Young author of The Shack puts it,

“Just because I work incredible good out of unspeakable tragedies doesn’t mean I orchestrate the tragedies. Don’t
ever assume that my using something means I caused it or that I need it to accomplish my purposes. That will only lead you to false notions about me. Grace doesn’t depend on suffering to exist, but where there is suffering you will find grace in many facets and colors.”

Never tell a parent their child is better off or tell a mother that her child wanted to leave her even to go to heaven, it’s like sticking a knife in her already broken heart. We don’t want our children to suffer. No good mother does. But, to add guilt to her grief by suggesting she is being selfish for going to any and every length to help her child survive and for wanting to hold onto her child as long as absolutely possible is unforgivable.

Don’t think for one moment that we aren’t eternally grateful for every millisecond of time we were given. Whether it is a few moments, or decades it matter not, our baby is now gone. We are grateful for all the yesterdays but we still want the tomorrow’s. We want our children with us today, right now and would give absolutely anything to have them.

Don’t get us wrong, we love and are grateful for all our children and grandchildren that are still with us, as we’ll also be for those we’ll be blessed with in the future, but that does not diminish our love or desire for those lost.

Please never, ever tell a grieving Parent or Grandparent that they will be stronger, better people because of the death of their child. No one wants to benefit from the death of a child. We know you mean well, but it plants thoughts in our mind like, “What if I was a stronger and better person to begin with? Would my baby have been spared?” Is that your intention? I highly doubt it.

Before you speak, pause to hug us and think. Tell us you are sorry. Let us cry and talk as much and as often about our baby without being made to feel guilty that you feel uncomfortable. Please don’t tell us that you think it is time we move on, leave that to the well-trained therapists. Our grief may remind you that we live in a world where children die before they are suppose to; a fact you may want to forget, but we don’t want anyone to forget our babies. We also don’t want anyone else to suffer needlessly if there is anything we can do about it. Therefore, we will keep talking about our children and about their death if we think it will help someone. It is important for everyone that we do.

We know it is difficult. Believe me, we know! We understand most people have no idea what to say or that some things are far more hurtful to say than they ever realized. I tell you now so that you will know. I, myself most likely said these very statements in an attempt to comfort others in their grief and offer answers for questions we all have, that there are simply no answers to-at least for now.

I close with a statement from a grieving Mother, “I love you all as always, as long as you don’t say any of those idiotic things…to me. Even if you think them, please don’t say them. They don’t give me strength at all.”

Strength is what we need and what we need more than all is your unconditional love. Before you speak, pause and just give us your love.

God Bless, my prayers are with you continually

G’nite to you all. Ronan and I love you to the moon and back.

xoxo

Hellllllooooo Philly!

I’m not scared yet. Is that weird? Because at this point I should be scared shitless. And I don’t need to point out the obvious for you all to know what it is I should be scared about. Maybe it’s because I’m too numb, still in too much shock, or in deep denial. But I honestly don’t think those are the reasons for my being fearless. I still have this insane feeling in my heart that Ro is going to be fine. Maybe every parent whose child is diagnosed with cancer feels this way. It’s survival mode perhaps? Whatever it is, I’m not going to question it and I am going to embrace it as much as I can. I’ve questioned so many things today. Why Ronan was chosen for this journey in the first place, but most of all why he has to fight so hard through it. He is fighting like I’ve never seen a person fight before in my life. I know this is a big part of why I can’t give up yet. As long as Ro is fighting, I will not stop fighting for him. How could I? Any parent put in this same situation would do the same thing 100% guaranteed. To give up now would be so cowardly. I have never been a coward in my life and I am not about to start.

Today was one of the most beautiful days I’ve ever had in my life. Fernanda picked Ronan and I up to go to the clinic at PCH. I cannot tell you how good it felt to be back there. Dr. Maze came to see us while we were waiting and I got to watch my friend and see the pain in his eyes. He puts on a very bad poker face even though he tried his best to give me his famous smile and everything is going to be o.k. look. He left after a few minutes and looked at me and told me he was sorry. I just sat and gave him a smile as that is all I could do. After he left, I sat and thought for a few minutes. I have no shame when it comes to telling him the things that come rambling out of my head so I sent him a short text that just said something like, “Please don’t tell me you’re sorry. I cannot have you give up on Ronan too.” He then replied that he would NEVER give up on Ronan and that is not what he meant. He just meant he was sorry that Ronan is in pain as it breaks his heart. I felt better after that as that man has been with us through this from day one. I know he will not give up on Ronan because he gets it. He knows Ro is different no matter how hard this is getting and he knows my child has the spirit of something that is unlike anything on this earth. Dr. Maze is not going anywhere and more mother fucking doctors should strive to be more like that man. Enough with the egos and the ” I am GOD” attitudes. Enough of this cowardly bullshit. Not naming any names, of course. That would be much too easy. Dr. Maze also knows Dr. Mosse and took the time to send her an email in regards to us. He thinks the world of her which is so very comforting to me. He is very good judge of character and the fact that he respects this woman so much, means everything to me.

We were soon called back to the clinic room where we sat for a while and Dr. Eshun, Ronan’s primary doctor at PCH, came in to see us. Another prime example of an amazing doctor who is full of compassion and heart. We sat and talked and the things we talked about were not easy; but not once did he break eye contact with me. That is HUGE in my book. It is a sign of respect and just pure hearted goodness. I asked him hard questions and he answered as honestly as he could. He gave me his warmest smile even though I knew he was sad. That mans smile could melt a room. I thanked him for being so kind to us and told him how much it meant to me that he had the courage to talk with me the way he did. He supports our decision and understands where as parents, we are coming from. I’ll bet he is the most amazing father. I can tell that about him. He takes all of this personally and has tried to guide us as best he could. We will always be thankful for that.

While Dr. Eshun was in the room, our social worker Marcia came to see us as well. She has been so supportive of us from day one as well. I’ve always known she was a special lady but today, she kind of blew me away. She was so hopeful and so supportive of what we are about to take on. She told me what a good mom I am and how proud she is of me. It felt really good to hear from her as I respect her so much. Her eyes were filled with so much light and love today and I know she believes. She believes in miracles and she believes in Ronan. She believes in our love as a family and believes he can do this. She is still standing by our side and is not going anywhere either. I am so thankful for this.

The next person I saw was, “A.” This was probably the hardest person that I had to face. I’m not sure why…. actually I am. It is because I am completely in love with that woman and I wanted nothing more but to come back to her with the most amazing news…. I did not want to come back to her this way. She sat with me, hugged me and held my hand for a long time. We talked about really tough things. Things that I think about on a daily basis, but I cannot go there yet. A is logical, realistic, and matter of fact. But this is why I love her so much. I know she is only telling me the things she is telling me because she wants to make sure I am as informed as possible and that I have thought about everything, every possibility, every outcome. She does this for me because of the love she has for our family. All that bullshit about doctors not getting personally involved with their patients is bullshit with A. She is fully invested and proved that by the way she ran out to our car today to chase us down to give us one last hug and kiss goodbye. Nobody at fucking Sloan would have done that for us. I think I may have set the bar a little too high with them. Don’t get me wrong, I still think they are one of the best hospitals in the nation. But they will never compare to my little PCH and the kind of quality care we get there. Today, I felt like I was floating on a fluffy cloud with all of my favorite people waiting for me with open arms. As shitty as the circumstances are that we were back, it filled me with the love that I have so been missing.

Dr. Maze also came back to see us again and say goodbye. We will see him soon and Ronan asked after he left if he could come with us. I told him I didn’t think so, but this time we won’t be gone so long so we will be back to see him soon. He smiled and told me that made him happy. Little love bug.

While I was waiting in the isolation room with Ronan as he ended up needing platelets and blood, I saw the woman who walks on water to me. Dr. Adams. I hesitated to chase her down but Fernanda was like, “Are you crazy?! You know that woman always makes you feel better!” Did I forget to mention that “Nanda,” as Ro calls her sat with me all day long? My darling, F. I don’t know what I would do without her. Actually, I do. I would not be getting though any of this and would be curled up in the fetal position somewhere. Anyway, as I was getting ready to chase down Dr. Adams I looked at Fernanda and said, “I can’t see her, my entire ass is hanging out of my pants!” I’ll have to back up the story on this one. I forgot to mention that I was wearing this pair of pretty thin seersucker pants today and when we first went to the clinic and I was getting Ronan out of the car, I dropped my cell phone and bent down to pick it up. I heard a big, “Riiiiiiipppppp.” WTF?!? I turned around to Fernanda and said, “Did my pants really just rip and is my ass cheek fully exposed?” Indeed they had. The only thing I could do was laugh and roll with it. I spent the entire day pulling down my tank top to cover up my bum as to not expose anyone to the beauty of my milkshake maker. You know, my favorite booty song…. “My milkshake brings all the boys to the yard.” Yup. I fully brought my milkshake to the clinic today and I don’t think Woody would have appreciated it if any boys came to my yard. Fernanda, of course had the problem solved as she had another pair of jeans with her. I threw those on and went down to see Dr. Adams. I peeked around the corner and there she was. I waited for her to see me before I approached her. She had no clue we were back and it took her a minute to register it was me. She looked at me for a few seconds and goes, “What are you doing here. I did not want to see you back.” I calmly explained the situation to her and she teared up and pulled me into a room. She hugged me, held my hand and locked eyes with me while we discussed everything. And I mean everything. She kept telling me that what matters now is the care that I am giving to Ronan, which is 100% my complete love and strength, but I also needed to let him know that we are all allowed to be sad because none of this is fair or right. She was 100% supportive of trying this MIBG therapy. We touched a bit about how his cure rate is now becoming slimmer and slimmer. I told her I knew all of this but I didn’t care if there was a 5% chance that he could beat this. I wasn’t giving up yet. She told me she knows what good parents we are and we know what is best for Ronan at this point. I don’t think I’ve said this before but just being in her presence almost scares me; but in a good way. I swear to god I’ve known her in a past life or something and I also swear to god that she is seriously an angel walking around on this earth. She has such a presence about her and is one of the most beautiful women I’ve ever come into contact with. When I am with her, it is as if she gives me the strength that seems to be surrounding her at all times. She has a very strong aura about her. I feed off of this and I actually felt really calm around her today. I always feel calm and at peace when in her presence.

We had our sweet Patty taking care of us all day. She is not even a nurse to me anymore; she is my friend. She sat with me, cried with me, laughed with me, and helped me with Ronan as much as he would allow. She helped me out to my car and carried all of our things. It was so nice to be back home today and I was so glad Patty was the one taking care of us.

Um, yes, hello. I could write a freaking novel tonight while on this red-eye. I should be sleeping but I have too much buzzing around in my head and to much to talk about today. I’m getting so sleepy but I want to touch on this woman Joanna who emailed me today and her email said please call me, I promise I’m not crazy. What the heck, I thought so I picked up the phone and called this lady who lives in Toronto, Canada of all places. Instant connection. She told me the most amazing story about something she had just experienced and swears it is a sign that Ronan is going to be o.k. I believe her. I cannot go into details because at this time, I am seriously about ready to pass out. This stranger picked me up off my feet today when I needed it most. We talked about fate, the timing of all of this MIBG therapy as if we would have started this any later…. Ronan would not be eligible for the antibodies that come after this due to a time period. She said maybe Dr. Kusher kicking us to the curb was a blessing in disguise because now we will start this therapy and if we get the response we are fucking praying our asses off for, Ro will still be eligible for the antibodies. We will cross that bridge when we come to it, but you all know I love a good fate story. Fate and hope are what I’m hanging on too.Thanks Joanna, for reaching out to me. It meant the world to me today.

Also, I am learning such lessons from a little 10-year-old. Not really lessons, but more like what it means to see this through the eyes of a very wise child. Mr. Luke Ashworth, my heart will forever be yours. Ronan’s cousin has been such a blessing to us. He loves my Ro so much and Ro loves him just as much. Luke gets all of this, as he is wise beyond his years. He looked at me tonight and goes, “Promise me you’ll never give up.” I looked at him and said, “Luke, of course I will never give up. I promise you that. I will never give up on Ronan.” We had our moment and I will never forget it as long as I live. He thinks about Ronan so much and is so worried about him. It takes a very special boy to be so concerned about something like this. I am so proud to have him as a part of our family.

This is all I can do tonight. Long enough for you all? Geez! Blabber mouth city could not shut up tonight. Adrenaline I guess. I’m in mama lioness fighting mode. One more thing I want to  mention…. Thought-out all of this I find strength in so many places, but one person in particular is always on my mind. It is someone I never knew, but he is one of my idols; Pat Tillman. I have called Ronan our mini Pat Tillman since he could walk. I often think about Pat and how strong-willed he was and just what an amazing man and role model he is to our family. We all worship him. I think about his strength and bravery and I channel this by thinking about him when I think I can no longer go on. He helps me put back on my fuck you cancer boots and continue to fight. I know if he were here and in a twist of fate, he were to meet Ronan, he would never give up on him. I feel like he is one of our angels watching down on Ronan wherever he is. Ronan reminds me so much of him… just the little I know of him from reading some books that have been written about him. One in particular by his mom. The things he did as a child are so similar to the spirit the Ronan embodies. So, Mr. Pat Tillman…. thank you for being the definition of what it means to be a real man and to fight for what you belive in no matter how many people tell you differently. You will always be a hero and a god in our eyes.

G’night my lovies!!!!!!! Or G’morning I should say!

So proud to have you all by our side and I will never get tired of saying that. You mean so much to us. CHOP here we come. Dr. Mosse, I have faith in you; I’ve known this all along. NOT GIVING UP. Who could give up on a fact like Ro’s?? Only the UGLIEST of souls.  And we don’t allow ugly souls on this blog.

We are here. We made it. I have not slept in 24 hours which is probably why my post was a little “hyper.” Adrenaline. In a turn of events, Ronan’s pain in his legs that he has been having, which has been horrific, is not bothering him at the moment. As soon as we stepped off the plane, he started smiling and told me he loved me so much. He has not complained once since we arrived to our room. I have a good feeling about this Philly place. I sent Dr. Mosse an email at 6:30 this morning telling her we had arrived, we were at her mercy, and would do whatever it takes to get Ronan started on this treatment as soon as possible. Not 10 minutes later she emailed me back saying no child should be in pain and that they will move his treatment from next week up to this Thursday. Now that is an amazing doctor. Talk about class, compassion, and heart. I knew this about her from the first time I met her. This is our time now. Things are falling into place and I am going to keep holding on to my belief of that. As Tricia dropped us off at the airport tonight and hugged me tightly she whispered, “Bring our baby home.” You bet your ass I will, TT. I promise you that.

Time to try to get some shut eye; although it looks like Ronan has other plans as he has set up a whole battlefield of Star Wars guys in our bed. Love my little fighter so much.

I hope you all have a beautiful day.

xoxo

Princess Leia and Captain Rex take on the world… or at least the halls of Sloan-Kettering

Last night was a little better than the night before. We have had a really, really, extra sweet nurse, Alex, the past 2 nights. She is adorable, looks like she is about 12, and really gets along well with Ronan. She is super patient with him, very calm, and is very doating. He meshes well with her which makes it nice on my part. All of the nurses are great here, but Ronan seems to have a connection with Alex. Reminds me a little of Arica back home, one of our favorite nurses on the floor of PCH. Miss her. I asked Alex what we could do last night to make sure we had less beeps. She tried her best, but the stupid “asspole,” went on beeping most of the night. “Inclusion in line, Inclusion in line!” is what it said. Which basically means there is a bubble in the fluids he is getting which causes it to beep every half an hour or so. Very disruptive and as my Charisma would say, “RUDE!” Ronan also had to be woken up twice to be given his morphine, which was not fun at all. He was a very mad little boy about it. After about 20 minutes of fighting, he swallowed his medicine and went back to sleep. Seems cruel to wake a sleeping child but rules are rules around here.

My mom came to relieve me around 11. Ronan was in a much better mood this morning when she arrived. We were sitting in our bed playing, when we got a special delivery via fax. A message from our very own “A,” back home! It was the sweetest note written to Ronan from her. I read it out loud to him and he got the biggest kick out of it. She even drew a monkey at the bottom of it for him. So sweet and thoughtful of her. It made both of our days. After our special letter, I gave Ronan his bath. He once again, sat and bathed all of his Star Wars guys which kept him busy. I told him goodbye and slipped out for my daily break. So thankful that my mom is here to help. She has had a lot of nice bonding time with Ronan. It is special for both of them. I went back to the RMH and thought about going on a run, but my left shoulder was killing me today. I decided to go around the corner to the Asian massage parlor I discovered a couple of weeks ago. It seriously looks like something out of a sketchy movie, but one thing I love about this city is you can never judge a book by it’s cover. It is the cheapest/best massage I’ve ever had in my life. Forget that there is almost no privacy as you are separated from other customers though sheets hanging from the ceiling that separate your beds…. the two times that I’ve been there, the place has been empty. A very well hidden secret I suppose 🙂  The women there give the BEST massage I’ve ever had in my life. I left there with still some pain in my shoulder, but it is better than it was. Thank you, ah sookie sookie now. (that was for you, daddy woo)

I returned to Sloan to find my mom chatting with Dr. Kushner. He stopped by to check in. We talked about Ronan and how great he looks and he told me him not having an ANC for this long is normal, considering all he has gone through. He also told me it’s great to see how well he is tolerating the chemo as he does not look like a sick child whose just completed his 8th cycle. He is such a tough little man. We talked a little more about our plan of attack but nothing will be confirmed until we see the results of Ronan’s scans, which are next week. Scanticipation begins. UGH. Dr. Kushner also sat and talked to me about running, because he is an avid runner himself and we usually always talk about it. He gave me some great Central Park tips which I always enjoy. He really is a very nice man.  Every time I look at him, I can’t help but obsessing over how brilliant he is. I cannot imagine the way his mind must work…. he has revolutionized so many things in the Neuroblastoma world. I really have to focus when I talk to him, otherwise I catch my mind wandering thinking about how he does what he does, eats, breathes and sleeps this disease everyday of his life. I’m curious as to how he came upon devoting his life to Neuroblastoma. So many questions, never enough time.

While I was out today, I caught up on things like mail, bills, emails, phone calls, etc…. I got to hear the voices of a few of my dear friends…. Fernanda, Tricia Boo, Niki, Danielle, Marisa, Pam, Amy, Lindsey, Auntie Karen, and Mr. Sparkly Eyes. I don’t get a lot of time to talk on the phone here due to being at the hospital so much. When I’m out alone, walking the city, I try to return a lot of my calls. It was so good to talk to my friends today. Good to hear their voices and to check in. Miss them all much.

Ronan and I spent tonight like we always do. We walked the halls for about an hour, shooting anybody that came our way. He was Captain Rex and I was Princess Leia. The nurses, janitors, doctors, patients, are great at playing with us. We came back to our room, played Star Wars, then called Liam and Quinn. It was good to hear their voices and I always love to hear the conversations between my 3 monkeys. Adorable. I cuddled in bed with Ronan and we sang “Twinkle Twinkle Little Star,” together just like we sing every night while I rubbed his back. It didn’t take much for him to drift off to sleep… it’s late here, midnight now and he fell asleep only about a half an hour ago. Sweetest dreams to the sweetest little boy. I whispered that I loved him to the moon and back and kissed him on his cheek. He tastes like milk and sugar.

My Tricia Boo is taking the Red Eye here tonight. Cannot wait to wrap my arms around her! She is staying until Sunday and Niki got in today as well. Double YAY! Niki is here with her kiddos and I am going to try to see them tomorrow. I only wish Ronan would be discharged so he could see his friends too 🙁 Keeping my fingers crossed that it happens by this weekend. I was telling Mr. Sparkly Eyes tonight that we have been inpatient for almost 3 weeks now. He feels awful and wanted to know how I was doing. I tried my best “Mrs. Positive Attitude,” and replied that I was making the best of it. He then went right to, “Cut the bullshit and tell me how you’re  really doing.” Can’t get anything past that man and it made me laugh out loud. I am such a fan of the bluntness. How am I doing this?? I honestly have no idea. I texted Woody in the middle of the night 2 nights ago to say if he didn’t bust us out of here I was going to murder someone. I have my moments of temporary insanity, but then they are usually quickly washed away by a flash of happiness, gratefulness, or beauty that comes my way… even if it comes in the form of something as small as Ronan telling me I look pretty and thanking me for being his mom. I swoon for his little, kind words. They mean everything to me.

Alright my sweethearts. Tired tonight and going to try to get some rest. G’nite and sweet dreams to you all. G’nite my Big Daddy Woo. Enjoy our cozy bed and cuddle up to my Liam and Quinn for me extra tight. I LOVE YOU AND MISS YOU SO MUCH.

xoxo

Goodbye little eyelashes, until we meet again

My mamacita made it safe and sound. She showed up to the hospital around 10 a.m. EST, and I didn’t even have to give her directions. Ronan decided last night that he did not want her to come. He kept saying he didn’t want to see anybody except for: Me, Woody, Liam and Quinn. When my mom arrived, he screamed his head off. She waited in the hall for a good 20  minutes before he would even let her into the room. After about an hour, he started playing guns with her and warmed up to his Nana. He is so territorial since all of this has happened. Makes it difficult to leave him with other people because the mom guilt kicks in. After Ronan settled down, it was time to go down to RT. We sent my mom out to pick up sandwiches nearby and Ronan sat in the wheelchair while our escort took us downstairs. I walked and carried his toy guns in one hand, and held his little hand in the other. He insisted on holding my hand the entire way downstairs. I told him it was like we were on a date. He laughed and nodded his little head. When we arrived to RT, we waited for our friends to come out and get us. Ronan was very excited to shoot them all with his new gun that his roommate gave him. They are all very good at playing along. As I put Ronan on the radiation table today, his little eyes were watering non-stop and he was saying they hurt. I looked down to see a bunch of his eyelashes had fallen out and they were in his eyes. I kept trying to wipe them out, but the more I tried, the more they continued to fall out. It almost become to much for me to see. My baby, lying on the table waiting for his radiation, with his eyelashes falling out once again due to the chemo. It was all very surreal to me. After I cleaned out his eyes, I left him for his 2nd to last day of his treatment. Once again, it only took a few minutes and I watched my baby hold perfectly still on the screen while “The Killers,” played in the background. I fought back the tears and won today. Victory.

Once we were finished with RT, we went back up to our room and Ronan actually let me leave to go back to the RMH to shower while my mom stayed with him. I walked back, dropped off my things and changed into my running clothes. I ran my 8 mile loop but it felt like 14. Even the amazing weather couldn’t push me through today. I was tired and feeling it. Running in Central Park sure is different during the day than night. I tried not to get too sad about all the little kids playing on the playground, knowing that Ronan was sitting in a hospital bed…. but I couldn’t help it… it kind of ruined my run. I totally prefer my dark and scary night runs to all the shiny happy people that have taken over Central Park during the day. It stings and it was a constant slap in my face today and I wasn’t able to get my mind off of the fact that Ronan has cancer. I use my runs as an escape from things….. the day run did not do the trick. Lesson learned.

Once I finished up, I showered and headed back to Sloan. I found Ronan asleep and a very tired Nana. She didn’t sleep much last night so I sent her on her way so she could get tucked in for the evening. Ronan has been pretty feisty this evening. Telling me things like he is mad at me, he doesn’t like his nurse here and only wants his nurse back home, Sharon, to take care of him. He also told me he wants “A,” Kristen, and Dr. Maze to move here to take care of him. Made me sad. Made me even more sad when he told me he was never going to see his brothers again. Poor little man. He doesn’t understand any of this… all he knows is he has to be separated from the people he loves most and he doesn’t know why. Breaks my heart everyday.

We spent tonight playing in his bed. Again. His ANC is still at 0. I think this is the longest he’s went with an ANC of 0 for so long. I just want to take him home. He’s mad tonight. He’s been throwing things at me and telling me he hates me and wants a new mom. My almost 4-year-old has the attitude of a teenager. Can’t blame the kid. All I can do is tell him what he is saying is hurting my feelings and he needs to think about the words he is using. I know he doesn’t mean it. He is just frustrated with everything in his life right now. He finally calmed down, told me he was sorry and he loves me. He spent the rest of the night being sweet as pie.

Hope you all are having a good evening. Thanks for checking in with us. G’nite my lovely friends!!

xoxo

P.S. Made it through the day without any tears. Until now. I love you, Suz. You know you will always have a piece of my heart, no matter how far away you are.

Dear Mama,

It was so good to hear your voice today.  I miss you more than you know.  You seem so far away from me…..and you are.  I’m sorry that I never know the right things to say on the phone.  I feel like there is so much I’m not doing for you and it’s killing me.  I’m not writing this email so that’s you’ll reassure me of anything. I just want you to know that if my thoughts of you guys could be documented and emailed everyday….you would be inundated with messages.  I think about you and Ro and the boys and Woo 50 times a day.  I truly do.  I HATE every bit of this.  I HATE that I’m not closer.  I HATE that I don’t know how to help.   I HATE that I don’t get to talk to you about silly things anymore.  I HATE that Ro can’t play in Central Park while you snap pictures of him staring at you with those gorgeous baby blues.  I HATE that you and Woody are in two different states.  I HATE ALL OF THIS AND I’M SO SORRY that I can’t wave a wand and make him better.  All I can do is pray.  I pray so hard for him Maya and I know that everyone else does too.  It will work.  I have turned to God my entire life and I know he answers prayers.  Izzie and Jude and I pray at night now too.  It goes like this:
Me-  “Dear God, please protect Izzie and Jude.”
Izzie-  “Amen.”
Me-  “Dear God, please watch over all the children in the world.”
Izzie- “Amen.”
Me- “Dear God, please let us all have sweet dreams while we sleep.”
Izzie- “Amen.”
Me- “Dear God, please take Ronan’s cancer away.”
Izzie- “Amen.”
Izzie- “Goodnight God.  Goodnight Jesus.  Goodnight Amen.”
This is every night for us.  We will keep praying Maya and I will keep thinking about you all the time.
I love you so much,
Susie

 

 

 

This is what I wish

 

I wish that I could sleep the entire night without waking up 50 times. I wish that my baby wouldn’t wake up as early in the morning because is little arm is hurting so badly. I wish this was me and not him. I wish that there was a known cure for this disease. I wish that I didn’t make my best friend cry yesterday because she was so worried about me. I wish I could take my twins, friends, and family all to New York. I wish Ronan did not have cancer.I wish my husband never doubted how much I love him. I wish Ronan’s cancer was going away. I wish no parent ever had to endure this kind of pain. I wish for my old life back. These are the things I wish for everyday of my life.

Yesterday, I took Ronan and Quinn to the clinic. We saw “A” and Ronan said his goodbyes. We had a picture day with all of his favorite people…. Sharon, Dr. Maze, and “A.” Turns out, we have to go back on Wednesday but we won’t get to see “A” or Sharon again, but we are hoping to see Kristen, Patty, Dr. Adams, and Elaine so we can tell them goodbye since we didn’t get to yesterday. I talked to “A” forever about Ronan’s arm pain. She told me she is almost positive that it is disease related. The only thing that is going to help is getting his next round of high dose chemo going on the 21st. I hate that there is nothing we can do until then. I can get him to take pain medicine if he is really hurting, but he hates taking it and puts up a good fight about it. The stubborn little guy would rather suffer. After the clinic, I dropped the boys’ off at the movies with Sarah so I could get some things done. Fernanda ended up picking me up for what I intended to be a productive work lunch… brought my laptop and all. Due to technically difficulties… The Vig’s internet wasn’t working so I am blaming that on our lunch gone array. We got nothing done except for a very long, deep, heart to heart talk filled with both laughs and tears. I don’t know how I am going to get through New York with her so far away. She gives me such strength.

The night around here was alright. I am having a hard time staying focused on what I need to do before we leave. Avoiding reality big time. I have no choice but to be productive today as Thursday is right around the corner. I finally talked to my long lost Charisma last night. We have not talked in a month but were finally able to last night. It was so good to hear her voice and listen to how she has been working away and testing for pilot season. Keeping my fingers crossed for my extra talented friend that something amazing comes her way.

I have been up on and off since 3….I was finally able to get Ronan back asleep a while ago and he is still sleeping away. I have been watching him on and off all night as he is fighting this pain so hard. It is gut wrenching to see him toss and turn and wince in pain as he tries to sleep. Poor angel baby. I feel so helpless and restless. It will be good to get to New York and get the ball rolling.

I hope you all have a beautiful day and are so very thankful for all that you have.

xoxo

Serenity now

Deep breaths and an amazing friends have gotten me through this past 24 hours. We were admitted into the ER last night around 9:00 due to Ronan’s low grade fever. I didn’t have to wait in the waiting room of the ER; THANK GOD. It was beyond packed even at 9:00 at night. The doctor on call, called ahead to let them know I was bringing Ronan in. As soon as we arrived, I told them our name and we were taken back into a room in the ER. Ronan was really not feeling well and was so tired. He passed out pretty quickly as the nurses checked all his vital signs and drew his labs. My friend, Fernanda, sent me a text to say she was on her way to sit with me because she did not want me sitting alone. She came armed with Starbucks and a big hug. We sat for the next 5 hours, trying to get Ronan into a room on one of the floors. Fernanda was on a war path…. but in the sweetest way so. There was nothing the nurses/doctors could do as they kept telling us all of the rooms were full on the floors 2 and 3, which is where we were supposed to be going. We used every trick in the book and Fernanda even tried to bribe one of the nurses with some Oreos that she bought in the vending machine. Didn’t work, but we got a chuckle out of it anyway. Finally around 3:15 a.m., the nurse said we would just have to spend the night in the tiny, freezing cold ER room. I was not a happy camper, have been saying some not so nice words, but have now relaxed due to Ronan looking and feeling 100 times better than when I brought him in here. Dr. Maze came and helped me out around 8 a.m. by using his very charming/stern words to explain that we needed a room asap. An hour later we were whisked off to the 3rd floor. Thank god for that man.

I got about 3 hours of sleep last night and I’m sure Fernanda didn’t get much more, but guess who was here at 9:30 a.m. to bring me coffee and keep me company? She was. Did I mention that my darling Fernanda has 5 gorgeous children of her own all under the age of 7?? Talk about an amazing woman and friend. Ronan didn’t even mind her being here and that is unheard of with him! I ran home to shower while Fernanda stayed with him. Made my day! He always throws a fit when I leave him, but was completely fine with this friend of mine whom he hardly knows. After I returned back here, Fernanda left and I thanked Ronan for letting me go home to shower. He said to me, “Your welcome, I like your friend.” So sweet!!!! He also was sure to tell me how much he missed and and how he loves me to the moon and back. Ahhhhh, little man!!! That more than made up for the recliner chair I had to sleep in last night and my seriously jacked up back today:) He seems to be feeling much better but just as I suspected, his ANC is at 0 and he needs blood. We will be here for most of the week I suspect. Fernanda…. I’m never going to stop telling you thank you for being such an amazing friend to me. And stop with saying it’s nothing…. because it is, and it means everything to me! I am so blessed to call you my friend. I love you.

Sarah came over this morning to help get the boys ready for school and to take them as well. Thank you so much, Sarah the Saint. Auntie Karen picked the monkeys up from school with her daughter Olivia and took them home to do homework and then to get some dinner until Woody got home from work. Thank you both so much; I am so thankful that Liam and Quinn are in such good hands.

I am running on empty and have downed 2 giant cokes, 2 coffees, and a ton of water. My typical hospital meals. Ronan is sleeping now and they are getting ready to pre medicate him for his blood transfusion. I am trying my best to channel all of the inner peace and strength I have for this weeks hospital stay. I am calmer than normal and it has everything to do with the fact that Ronan seems pretty happy to be here. I found myself thinking selfish things today like, I so need a massage, a pedicure, a spa day, a bath and 12 hours of sleep to feel better. It turns out I needed none of those things because just having Ronan acting somewhat like his normal self and being so loving and sweet to me, made all of the whining and complaining I was doing in my head, disappear. I think he was feeling really crummy at home and now that he is starting to feel better I can see him coming back to me. He is comprehending so much these days for only being 3 1/2. He is confused as to why we are on the 3rd floor and keeps asking for his normal nurses like Sara, Arica, Danny, Kathy, and Amy. I tried to explain to him that it is because he has a little cough that we have to be on the third floor for the time being. With it being RSV season, any little sign of a cough and you are banned from the 2nd floor. Tonight, he was telling me about all the people that take care of him and who love him. He named Dr. Wood, Dr. Maze, Sharon, “A,” and then he goes and Dr. La Quaglia took the big Death Star (he calls his tumor the death star from Star Wars) out of my tummy. He even pronounced his name right which was so dang cute. Ronan is so smart and doesn’t miss a beat. I’ve got to start watching what I say around that kid:) We have had a great night together but are so beyond tired. I’m hoping to get a little sleep as I am exhausted from the happenings of last night and the 3 hours of sleep I am running on.

Here’s to hoping tomorrow will be even better as he starts to get his strength and health back. We’ve got to get him well before transplant and I would like to be able to enjoy our time at home before we go in for the long haul. Thanks for checking in and keeping Ro baby in your prayers and thoughts. We are so lucky to have all of you thinking of him. G’nite sweet friends. G’nite Daddy Woo. Hope you are enjoying our big bed all to yourself:) Miss you.

xoxo

Open Your Eyes

All this feels strange and untrue
And I won’t waste a minute without you
My bones ache, my skin feels cold
And I’m getting so tired and so old

The anger swells in my guts
And I won’t feel these slices and cuts
I want so much to open your eyes
‘Cause I need you to look into mine

Tell me that you’ll open your eyes [x4]

Get up, get out, get away from these liars
‘Cause they don’t get your soul or your fire
Take my hand, knot your fingers through mine
And we’ll walk from this dark room for the last time

Every minute from this minute now
We can do what we like anywhere
I want so much to open your eyes
‘Cause I need you to look into mine

Tell me that you’ll open your eyes [x8]

All this feels strange and untrue
And I won’t waste a minute without you