You must have been a beautiful baby

Ronan’s counts are still rising. He had a great day. I came to the hospital this afternoon with Liam and Quinn. The 9th floor blocked off the playroom for us so Ronan could play with his brothers. We stayed in there for about 3 hours and the boys played their little hearts out. The twins then left with Woody to go back to the RMH so Woody could shower and get some work done. I stayed with Ro for the rest of the day and evening. We played out of our room most of the day, and walked the halls shooting people and playing in the playroom. Ronan took a red marker today and colored all of his arms and said it was blood from his battles. Pretty much anything goes in the hospital as far as I’m concerned as long as he is having fun. I gave him a good bath afterwords in a little tub of water on the floor. He’s all clean now and just fell asleep as he didn’t nap today. Woody is on his way back here to stay the night so I can have some time with L and Q.

We have some scans set for Friday and Ronan will be discharged after that. They keep changing the set of scans we are having but as of now, I believe it’s the CT and Bone Marrow on Friday and the MIBG next week. That is the last I heard from one of the doctors earlier today, but that could always change. I asked New York Miss Macy if she could take Liam and Quinn for a few hours on Friday so they don’t have to sit in the hospital with us and wait. She happily agreed and I know the boys are going to over the moon about spending some time with her. It will be so helpful to us to have them off somewhere having fun, rather than sitting in a hospital.

So anybody that knows me, knows that I have been obsessed with taking pictures my entire life. Just a hobby that brings me much happiness and always has. Taking pictures of my kids is definitely my favorite subject. I have over 11,000 pics on my iphoto… so to say I’m obsessed is an understatement. All of my pictures on my iphoto are now defined to me as, this was our life before Ronan had cancer and this is now our life after. Sad but true.  Going back and looking at pictures before all of this is painful to me and makes me break down in tears. Every picture of Ronan before all of this makes me sick to my stomach as I would have never in my life have imagined this happening to him. He was such a gorgeous baby…. how can he now have cancer???  I sit and look at all of our pictures before all of this and we were such a happy family. We have so many beautiful memories and we were so blessed. I get so angry that all of that has been taken away and we have to work so hard to now find our happiness in the hardest of times. Today, as I was pushing Ronan’s asspole around the halls as well as trying to carry his gun, Star Wars guys, and his Crayola markers that he called his “Missles,” I was overwhelmed with anger. I caught a glimpse of him walking down the hall as I followed behind and he almost tripped over all of his lines. He looked back and goes, “Mom, I can’t carry my tubies and my guns.” I wanted to punch a freaking wall. It makes me sick that my 3-year-old has to worry about tripping over his lines. I am also pissed because Ronan has his 4th Birthday coming up and all I wanted was for him to be home. Instead, we will have to celebrate it in the hospital. All he wants to do is go back to Phoenix and he tells me at least once a day that he is never going to get to go back home and be with his brothers. I tell him that is not true, but no matter how much convincing I try to do, he argues with me and does not believe me. In his head, he thinks we are going to stay in New York forever and he thinks he is never going home. So much for a little boy to try to understand. Too much for a little boy to try to understand. As happy as he is, I also know that he is worried and sad and there is nothing I can do to take that away no matter how hard I try. That is my venting for the evening. I feel a little better now. Not really, but I am trying to convince my self otherwise.

I left the hospital late tonight and came back to RMH with Liam and Quinn. We went down to the common area and worked on some of their homework that their wonderful teacher, Mrs. Martin sent with them. I cannot tell you how good it felt to sit and help my boys with their homework, like a normal mom. After we worked on homework for about 30 minutes, we played the board game Operation. I have not played that game since I was a little girl. We had so much fun playing it together tonight. We are now all snug in bed and Liam and Quinn are watching CSI. A bit mature for them, but they both say they love it. My 7 year olds are now going on 30….. They are growing up way too fast:( Makes me sad.

Tomorrow is a new day. One more day closer to getting Ronan out of the hospital. Cannot wait to see Miss Macy tomorrow. Cannot wait until Friday, when we can bust Ro out of there and all be together outside of Sloan. Sweet dreams, my friends. Thank you for checking in with us. Have a beautiful day tomorrow.

xoxo

Pure and simple happiness

I’m not sure what exactly has been going on lately. Do I dare say it as I feel like I’m jinxing myself? I’ve been feeling really happy. Like, really, really, really, happy. Not a lot of tears, not a lot of sadness, just a feeling of complete and utter happiness. I cannot remember the last time I’ve felt this way. I’ve taken this hospital thing and totally turned it around. I’m making every second that I am here with Ronan as fun as possible. We have done so much playing and laughing. Nights are the best around here. especially tonight. Tonight, we have our own room. It’s a miracle! We have taken full advantage of it too. We had Trish come over for a little while, until Ronan kicked her out. After she left, we played Star Wars and guns. We ichatted with Woody, Liam, and Quinn. We danced to some silly Star Wars thing on YouTube. We bathed his Star Wars guys and Ronan took a bath himself. Or as much as one as he could. We cuddled, snuggled, and made a fort. He stayed up super late and is just now starting to drift to sleep. I know a lot of this happiness is coming from me watching him get “better.” His pain is almost entirely gone in his arm and you have no idea what a relief that is. Seeing him hurt like that was one of the hardest things I’ve ever had to watch. I know we have scans coming up and I know it is going to be tough, but I really feel like we are going to see something positive come out of them. I feel like he is on the right track and we can start moving forward. I have nothing to base this on…. lord only knows what could really be going on in that little body of his. It’s just a feeling I have and that in turn has a lot to do with my happiness. He just looks SO great. So much like his old self. I cannot get over how strong of a little boy he is. His strength amazes me more and more everyday. I certainly do feed off of him and the way he is feeling. He is happy right now so I am happy. It is very simple.

I’m also basing a lot of this happiness on just being in New York. Don’t get me wrong, I miss my twins, my hubby, my home, and my friends, so much. But if I have to be anywhere else in the world; this is where I want to be. I feed off this city. All of the running I have done has really been helping me too. It is so therapeutic to me. There is just something about pounding the pavement and getting out all of my aggression in a way is a healthy outlet for me. Many times while I am running and if a hill becomes too hard or I get a cramp, I make myself push right though it. I like to picture Ronan as a teenager running beside me and me trying to keep up with him. I envision these things a lot. I also think about all the pain he has gone through and if I start to feel tired or sore, I know it is nothing compared to what he has gone through, so I just keep going. He is so inspiring to me and I refuse to give up on life, on running, on my relationships, on myself. I will keep pushing forward for him. Woody is very surprised at how well I am sounding lately. I told him not to hold his breath, as I know it can change in an instant… but for now I am just doing the best I can in this very moment and nothing more. A good day is cherished more so than it has ever been in my life before all of this.

Trish came over today and stayed with Ronan for the day. I went back to the RMH, crashed in bed for a while due to the 3 hours of sleep I had gotten the night before. I then got up, showered, and ran down to Starbucks with my laptop to catch up on some things. I ordered my coffee…. the place was packed with nowhere to sit so I went to the nearby neighborhood pub. They have WiFi so I sat in there and drank my coffee. My friend Barbara called me and said she was on her way home and I should stop by. She has an apartment right across the street from the RMH. I told her I’d be right up. When I arrived, she wasn’t home yet and I was greeted by her lovely husband, Stewart and their adorable little dog, Uno. I plopped on the couch and was surprised at how at home I felt. I talked with Stewart for a while and a few minutes later Barbara came busting in the door as excited as could be. She had just taken a family to buy a new stroller for their 3-year-old little girl who is staying at the RMH house. Super sweet family and their daughter Brooke was absolutely darling. She has Neuroblastoma as well. They are here to have Dr. La Quaglia do her surgery on Monday. I told them they were as close to God as they could get with that man caring for their daughter. He is the next best thing. They soon left and I sat on Barb’s couch and talked with her for a bit. I did not want to leave and totally could have stayed there forever. It was so cozy and comfortable. I am so glad she is right across the street from us. Makes me feel a lot less lonely here. She is so welcoming and warm. A true New Yorker with a heart of gold.

It’s people in the world like Barb that make me feel like I am going to be o.k. in this city. I will find my way, meet new faces, and build my new little world of helpers here. It will take time but I’m on my way. There are so many nice people in this city. I’m not scared, intimidated, or overwhelmed. It just feels right. It just feels like my second home.

Tricia is leaving tomorrow. Let the tears begin. I wish I could keep her with me here forever. It is so good to be together. She will be back though and I know all I have to do is say the word. Woody is flying in on Tuesday and I called him today to see if her could please bring the boys’ with him. We talked to their teacher and she said it was fine. Ronan misses them so much. I miss them so much. We need to see them. They will come out with Wood Tuesday night until Sunday. It’s is going to be so wonderful to all be together. I’m going to turn my little Liam into a New Yorker after all:) The scan days are going to be hard with them here, as those days are always very intense but we will make it work.

Getting sleepy now and Ronan is passed out cold. He played hard today. Sweet baby boy. I hope you are all having a wonderful weekend. Thank you for checking in on us. G’nite dear friends!! We love you!!

xoxo

What else do you have for us, world???

I’ve done so well these past few days. Enjoying Ronan feeling better, enjoying Quinn, enjoying Woody, just living life being so thankful for what we have in the here and now…. trying not to worry about the future or what tomorrow may hold. Living in the present, in the moment, and nowhere else. It’s days like today that I am overcome with sadness. It’s days like today where the tears won’t stop. Some days, it’s too much for me to watch Ronan hurt. His screams and tears become unbearable. His suffering rips my heart out to the core. Yesterday, while our nurse, Julia, was flushing one of Ronan’s Broviac lines, it broke. Which means it has become too weak from too much wear and tear, which is not uncommon. She quickly clamped it off and called in another nurse to call the “Green Team,” which is the code name for Dr. La Quaglia and his helpers. He came to see us and decided that Ronan needed a new access system put in. They decided to put in a temporary line for now and in a few weeks Ro will either get another Broviac or a Mediport. Regardless, Ronan had to be put under anesthesia today and Dr. La Quaglia took out the Broviac on the right side of his chest and put in a new, temporary line in the left side of his chest. Ronan woke up pissed…. more so than normal. We went back to our room and soon an escort came to take us downstairs to floor 2 for an x-ray to make sure his line was properly placed. I could not get Ronan calmed down. The new temporary line was all bloody and he kept trying to rip it out. He screamed and cried for a good hour while I held him and let him hit me and listened to him tell me he hates me. He was screaming that his new port hurt and he wanted it out. There was nothing I could do but sit, hold him, and try my best to calm him down. I had Woody call a doctor and nurse down to come and  look at his new line, as the blood was worrying me. Soon they took us back for his X-ray and I sat him on the table while he was still screaming and saying it burned. The technician let me stay in the room and somehow I actually managed to get him to hold still for the picture. I was bawling the entire time. After his x-rays, a doctor and a couple of nurses came in to make sure there was nothing out of the ordinary going on. The blood had stopped and they changed the dressing and cleaned him up. I asked the doctor all the usual questions…. if this was normal, why is there so much blood, why is he is so much pain, etc. They explained everything to me and ended up making me feel better. By this time, Ronan was exhausted and as they wheeled us back up to the 9th floor, he had finally calmed down and he gave in and let his little limp body rest on me. I held him tight, rubbed his back as we were wheeled into an elevator full of people. An elevator full of people whose eyes were on us the entire time as I sat and let the tears pour down my cheeks because I don’t care and I cannot stop them today. Today, has not been a good day. Watching Ronan and all he is having to go through becomes unbearable at times…. no matter how strong I am trying to be. We are not getting out of here anytime soon. Woody thinks maybe Monday. This chemo has done a number on his ANC counts and has wiped him out. I’m sad for Quinn who only wants to be with Ronan and vise versa. The main reason for keeping Quinn here was to spend time with Ro and that has hardly happened. He asks me 10 times a day when Ronan can be released from the hospital. I am going to be heartbroken if it is not until Monday and Quinn has to go back to Phoenix without spending much time with Ro. So not fair.

Ronan is sleeping now and they have him hooked up to a morphine drip to help with the pain of his new line. I hope he wakes up not so upset about the new foreign object in his body. He has every right to be upset, mad, scared, confused. None of this makes any sense to him and I don’t blame him for being angry at the world. I am trying my hardest to be so very strong for him and to explain all of this to him in a way that makes a little sense to his young mind. It is all I can do today to not crawl up in a corner somewhere as I feel so tired and sad. I miss my support system back at home so much. They give me so much strength and love and not being surrounded by our dear friends and family has been harder than I expected.

Alright my sweethearts. This is all the update I can muster up the energy for today. Lots of love to you always. Thanks for checking on us and also a big thank you for all the people who have responded to donating blood and platelets. Means the WORLD to me. THANK YOU THANK YOU THANK YOU. I love you all so very much.

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

Let the hiding begin….

Hello. Hope you all are well. I have officially gone into hiding. So much so, that my 3 besties had to bust into my house on Sunday morning to make sure I was o.k. I felt like I was on that show, “Intervention.” I don’t mean to shut everyone out; but it’s what I do best. Being home has been great and I have been loving spending time with Liam and Quinny. I could easily stay in my house and never leave again because when I do go out, the anxiety is still too much. Woody practically kicked me out of the house last night and made me go to a movie. I picked up Linds (my go to last minute girl… thanks mama) and we went to see “Black Swan.” Good movie, but I should have picked something a little less dark. After I dropped off Linds, I was driving home and the tears started up and I couldn’t get them to stop. I had to pull over because I couldn’t even focus on my drive. I’m not going to tell you what thoughts were consuming me…. but I’m sure you can guess. I still don’t think this is real. I still can’t wrap my head around the fact that my perfect little boy is so ill. It seems like yesterday that he had a head full of hair, and was running around always looking for trouble. I can’t tell you how much I miss that little boy. The little boy that I could never get mad at because one look at those bright blue eyes and that mischievous smile and I was done. I always ended up laughing at whatever naughty thing he did. Well, most of the time:) Now, I get to watch as he is too weak to walk and wants to me to carry him all of the time. Now I get to lay next to him and know that every breath he takes is a blessing and every kiss he gives me is a dream come true. Every tear that falls down my face is for him and I think about what sadness was like before all of this. Before all of this, sadness should have not existed in my world because I absolutely had nothing to be sad about. Everyday is a struggle for our family; nothing is easy anymore. I am doing what I can do to push through the motions, I am doing what I can do to survive. I am still numb to everything around me, except for pain. I feel that every second of the day.

We got a call from Radiology today and we have all of Ronan’s scans set up. February 2nd, Ronan will go under Anesthesia for his Bone scan. February 3rd, he will go under Anesthesia again for his MIBG, Pet scan, CT scan, and MRI. These two days are going to be very telling for us. After these scans, we will know exactly where the cancer is left in Ronan’s body and from here we will find out when we start the stem cell transplant. We already know that it is clear from his bone marrow; but the MIBG scan will be the most telling of them all. A MIBG (iodine meta-iodobenzylguanidine) scan is a test used to find tumors of a specific origin. This scan will light up Ronan’s whole body to show us where the cancer is still active. Of course we will be praying that it has diminished immensely. Ronan has come too far and worked too hard for it not to.

So, this is my update for today. Tricia was officially concerned because I have gone off the radar; so here you go Tricia Boo. I’m here, or I’m here as much as I can possibly be. I haven’t been talking to anyone so I hope none of you are offended. I miss you all but just need some time to get back in a routine at home. I miss my New York Miss Macy dearly. I will think about the time I had with her and Tricia in New York when I need to smile. The time spent with those two and Ronan meant the world to me. It felt so good just to be and laugh, even though we were in a hospital with my baby who has cancer. True friends that can make you smile and laugh during the hardest times in your life, are the truest of the true. I love you both so much.

Magic Medicine… Day 2 Round 6

I so needed to take a little break from the hospital today. Ronan is still refusing to get out of bed so we spent the morning playing; I tried my best to entertain him. Our favorite nurse, Sharon, came to do Ronan’s dressing change. He did pretty well with it but at one point I heard him yell out to her as she was taking the tape off, “I’m not a brave boy, I’m NOT A BRAVE BOY!” Neither of us had said anything about him being brave, but in his little 3-year-old memory, he hears us telling him all the time how brave he is and as he was hurting from the pain, he decided to let us know that he was not brave. We both told him he was, that he was the bravest boy in the world. UGH. I could cry right now just by telling this story. A 3-year-old should not what it is to be brave and to have people tell him he is brave all the time. Cancer is robbing Ronan of his childhood and I am fucking beyond pissed about it. His childhood, his innocence, his toddler years are being ruined. This will never be alright with me and I swear to god, I will do something about it. For all the Ronan’s, Jacks, Mia’s, Phoebe’s, Coleman’s, Victoria’s, Leo’s, Noah’s, Tripp’s, Ashley’s, Layla’s, and everyone else out there that is suffering and dying from this disease. I will not stop until people start paying attention to childhood cancer

Auntie Karen came around noon and I snuck out to go home. I wish I could say I was productive at home but I just tried to catch up on some sleep since I only slept a few hours last night. I tossed and turned during my nap today; even though I was exhausted I can’t escape being restless. I got up, showered and ran off to my hair appointment. It felt so nice to do something normal and to be out of the hospital. Sarah (the baby whisper) came and relieved Auntie Karen and sat with Ronan for about 5 hours. Thank you both today so much; I don’t know what I would do without you.

Ronan is tolerating Round 6 really well so far. I know the effects won’t hit him until late next week but for now, besides the fact that his spirits are down, he is doing well. He hasn’t had any nausea yet which is great. I can’t wait to bust him out of here hopefully on Saturday evening. We then get a few weeks off from the hospital before we start the Stem Cell Transplant. We will have more scans done in the next couple of weeks to give us an exact answer on where exactly Ronan still has cancer left in his little body. I will update you when I know exactly what the date is going to be. Ro is peacefully sleeping now; he looks so beautiful. I swear I could sit and stare at him all night which is really what I end up doing most of the nights that we are here. My eyes will never be able to soak up enough of his beauty.

I received some exciting news tonight via FB! My friend, Jessica, posted on my wall that she saw my comment in US Weekly re: Sloan Kettering and Jake Gyllenhaal’s visit. I called up New York Macy to see if she had the issue. She didn’t and sounded half asleep but still said she would drag her butt out of bed and into the freezing cold at 11:00 at night to buy the issue. I was laughing at the thought of that and told her no way, that I would call up Trish or Sarah. I ended up calling Sarah and she ran out to grab a copy so she could tell me what is said. Thank you, SARAH!! You are such an amazing friend:) Not only did US Weekly put Ronan’s website in the latest issue, but they gave me a whole little side blurb. I am practically jumping up and down on the hospital couch I am SO EXCITED! After hearing this news, I can’t stop smiling and it feels so good. It’s been a couple of days since my smile has come out to visit:) This so raises the bar for us in getting the word out about Ronan and changing the way the world views childhood cancer. A huge thank you to Jennifer at US Weekly for keeping her word and having something so sweet come out of this. Now, if I can just get Jake to become the voice for childhood cancer. We don’t really have a voice and as I said before, I feel like he could really be a good advocate for us. I’m going to try my hardest to make this happen; people have to start listening and paying attention to this issue. There are too many babies, kids, teenagers, suffering from cancer for it not to get more attention.

Woody and I were having a conversation the other day about unconditional love and what it means. We are at a point in our life where we have so many amazing people doing things for us. You know who you are, all of you who are helping us all while asking of nothing in return. Please know that not a day goes by that I don’t think of all of you. Trust me, it kills me to not be able to sit down and thank each and everyone of you individually. You are all amazing, even the people that we do not know and who are starting to call themselves “Ronan’s Fans.” I try my best to keep up on all the comments on here and I hope you all know how much it inspires me, that I am inspiring you. Ronan is so full of beauty that he has flooded our lives with it by touching so many of your hearts. I will forever be eternally thankful for each and every one of you.

Transplant is going to be hard and some of you have asked what you can do as far as sending things for Ro to play with; for us to please make a wish list of things that you can send to the hospital to keep our little guy entertained. Keeping him on lockdown for 20-60 days is going to tough. I’m trying to get creative and think of the best ways to keep him happy. Of course you know his love for Star Wars so I was thinking of putting up a bunch of Star Wars posters in his room and making it very Star Wars themed. I went on Amazon the other night and they have a couple of different Star Wars tents that I am thinking he would love. As far as toys go…. I know everything has to be new or very sanitized to go into his room. It has to be insanely sterile. iTunes gift cards are always great. Ronan has totally taken over my iPad and loves to download movies, books, games, etc… My iPad has been my saving grace over these past few months; it keeps him entertained for hours. He has watched Season 3 of Mickey Mouse Clubhouse for about 3 days straight now and loves that he can choose the episode himself. I love to watch him do this; I can tell it gives him a feeling of independence and pride.

I can’t believe this is the last round of Ronan’s Magic Medicine. Look how far our little guy has come! After all he has endured and all the pain he has suffered, his beauty never fades. I can’t wait until this round is done and I can do my “Ronan’s done with chemo happy dance!” The light at the end of the tunnel is getting closer!!!

G’nite, sweet dreams, to all of you angels out there.

xoxo

Sad to leave, but have to go

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

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

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

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

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

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

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

xoxo

There is nothing sweeter than kissing the bald head of a cancer child

You
know how some things in life were just so meant to be? Things like
this seem to be happening to me often these days, but today it is
truer than ever. I’ve mentioned before my new friend, Macy, who did
not know me, but my blog was passed along to her through a friend.
She lives in NYC and sent me a message saying if there was anything
I needed, to please contact her. I went on Facebook, friend
requested her, and we hit it off immediately. She went to ASU as
well and graduated a year ahead of me. She is nothing short of
amazing. She came to the hospital this morning with her big bright
green eyes, coffee and bagels. She did not leave the hospital until
10:00 tonight. She stayed the entire day today, we had so much fun
getting to know each other and Ronan is in L.O.V.E. The two of us
have so much in common it is scary. I had the best day today. We
played with R, laughed, got to know each other, and Ronan
absolutely loves having her here. My little guy normally kicks
everyone out. He has loved Macy since the moment he laid eyes on
her. She helped me so much today, watched as Ronan had his broviac
dressing changed, helped me talk him though it, read him books, and
just loved on our little guy. It was a very special day to say the
least. How did I get so lucky to come across this amazing soul?? I
am amazed everyday by the blessings in my life. Love you, Macy….
can’t wait for you to move to San Fran so we can be closer to each
other!!

Ronan got his chest tube out today and everyday I am more
and more impressed by my little guy. It looked freaking painful,
and he didn’t even flinch. He just laid there and let them pull
this big tube out of the side of his abdomen. He is such an angel
with all of the poking and prodding, it is amazing to witness. Macy
was dying when he was getting his Broviac dressing changed. Our
nurse, Julia, was so good at doing it and was so gentle, but it
still hurts. He sat as still as he could and in his little voice
was saying things like, “I need a break,” “Please don’t rip my
skin!” and “Please I need a band-aid!” UGH. It kills me every time.
I about died when he was telling her not to rip his skin, but he
made sure to say please before. I mean, are you kidding me with
this kid?? All the nurses and doctors here are in love with Ronan
and cannot get over his big blue eyes and how well behaved he is.
I’m telling you, he is a brand new boy, his whole attitude is
different. He is showing cancer who is boss.

So, today we got word that the study we are on, COG, emailed Dr. Kusher to say that we needed to come home for Round 6 of chemo, otherwise we are going to be kicked off of the study we are on. I am beyond pissed. All of our doctors said it was o.k. to stay here, the doctors here are fine with it, but we are just now being told that it is not o.k., even thought he would be getting the same dose of chemo here than he would be getting a PCH. Does not make sense to me at all. I told
Dr. La Quaglia to please see if we could stay, but I have a feeling
it is out of his hands. I’m pissed. I am a girl who likes a plan
and we had a great plan in place. I wanted to get Ronan as healed
as possible and just get his chemo started pronto here and get it
done and over with. Now, I have to pack up everything, put my baby
on a germ infested flight because we didn’t have time to contact
anyone who could fly us home, risk his immune system, and
everything feels so rushed. I am beyond annoyed and I don’t know
why stupid COG is just now letting us know this. I feel very
unprepared and honestly, I am not ready to go back to Phoenix. I
was in such a funk there and the proof is in the pudding. Tricia
told me tonight that she was talking to Marisa and they have both
been saying how great I sound, how I sound like the old Maya. It’s
this city I tell ya. It has healed me a bit because everything here
has been so positive. The energy, the buzz, the doctors, the
hospital….. everything is top notch. Our doctors come by at least
twice a day, stay around forever, and the care here is amazing.
Even the lady who takes out our garbage comes walking in with a
smile and saying, “There’s my Ro baby! How you doing today,
gorgeous?” The freaking garbage lady knows Ronan’s name and is
always happy and smiling. New York has been a rebirth not only for
Ronan, but for myself as well. What if that all goes away when I
get back to Phoenix?? I know I can’t stay here forever, but I had
already prepared myself for another couple of weeks. The bottom
line is, I don’t want to rush anything with Ronan… the baby just
had a major surgery and I feel like letting him heal here is the
best thing for him. I’m letting it go… I don’t have a choice. I
can’t fight the COG people…. so whatever happens, happens and we
will make the best of it. I’ll admit, I’ve gotten spoiled here. The
care is unlike anything I’ve ever experienced and they make you
feel like you actually do matter, like you’re not just another
statistic.

Today was full of exciting things. Ronan felt great, we played a lot. I made him some homemade slime which he loved, but
did not want to touch. My hands are still purple from the food
coloring. So funny. Guess who else made it a great day?!?! My
Tricia Boo! She is here, safe and sound. I almost fell to the floor
when she walked in the room. Instead, I cried and held her for a
very long time. I’ve missed my BFF way too much. It is going to be
so great to have her here. Macy got to meet her and they totally
hit it off. Ronan was in HEAVEN. He was so adorable, just sitting
in his bed, watching us girls gossip and laugh. Tricia and I
somehow got on the subject of the movie, “The House Bunny” and we
were doing funny lines from the movie since Macy has never seen it.
I have not heard Ronan laugh in days, but tonight as we were doing
our funny lines, he was watching us and laughing so hard from his
belly. Oh, it was the sweetest sound to hear. He must think we are
nuts, but he was loving every second of it. We had so much fun
tonight. I am so thankful to have TT here. Talk about a true
friend.

My last bit of exciting news for the night is insane! A
reporter from US Weekly contacted me because they heard about Jake
Gyllenhaal’s visit to Sloan Kettering though my blog! They want to
talk to me more about it and the girl was so touched by Ronan’s
story, she said to please let her know if there is anything they
can do. I emailed her back and told her I would be happy to talk to
her, but I was requesting two things. 1) For her to please get
Ronan’s website in US Weekly… anywhere. I told her how important
it is to raise awareness for what so many children are going
through. And 2) I asked her to please get my Liz a date with Jake!
I was half joking on the second request but thought I’d put it out
there. She sent me an email saying, Of course she would (not sure
if she was talking about the website thing or the date for Liz) but
regardless, she is calling me tomorrow. I’m going to try my best to
get her to help me spread the word on Ronan. And I only have the
nicest things to say about meeting Jake. He was a gem. I’m so going
to try to get him to take on childhood cancer as his charity. I
know he does a lot of things for animals, which is so amazing….
but these kids need a voice and I feel like he has the heart to do
it. Overload tonight. I had so much to share and could keep going
but my eyes are drifting off. Tonight, I am so thankful and so
blessed to be surrounded by such beauty. Ronan shows me everyday
what it truly means to be brave and strong. He is such an old soul.
My very own Master Yoda:) Sweetest dreams, friends. xoxo Ronan and
Macy!!

Day 1, Post Op

We have been back at Sloan since yesterday. Dr. Angel (La Quaglia) came by yesterday and was blown away that Ronan was already out of the Picu. Dr. Kusher, whom is one of the Neuroblastoma Doctors here, came by as well. He has been the one from the beginning whom has been talking to Woody since the day of Ronan’s diagnoses. I was thrilled to finally meet him and he could not have been nicer. We talked about Ronan and he too kept saying how pleased he was with how well everything went and how great Ronan looked. I asked him about the NYC marathon because I had heard he runs it every year here. He runs for a charity called Fred’s Team. Here is a bit about it below.

Imagine a World Without Cancer

Fred’s Team was named in honor of running legend and co-founder of the New York City Marathon, Fred Lebow — a man who dared to dream of a world without cancer.

While being treated at Memorial Sloan-Kettering in 1991, Fred never stopped running. As he jogged down the hospital hallways, he was inspired by the hope he saw in the faces of the pediatric patients he passed and became determined to run to raise money for a cure.

Fred ran his last New York City Marathon the following year, enlisting sponsor donations to support research at MSKCC. He also wrote to other marathoners and encouraged them to do the same. “Running the marathon is the best way I know to fight this disease,” he said.

Fred’s Team became official in 1995, and since then thousands of members — experienced athletes and novices alike — have joined the race against cancer. The team has grown and the race calendar has expanded beyond New York City to events worldwide, but the goal remains the same: to fund research that brings us closer to a world without cancer.

I’m coming back here to run the Marathon for Fred’s Team next year. And you all are invited to come along with me. Dr. Kushser was telling me how at mile 16, a ton of his cancer patients are there waiting for him. How amazing is that?? What an inspiration.

Last night went really well. I slept with Ronan and Woody slept on the pull out bed at the hospital with us. Ronan slept really well and of course in the morning when I woke up, I noticed that his NG Tube (Nasogastric tube) which went all the way down into his stomach in order to drain his stomach contents via the tube, was gone, pulled out, and laying by his side. That little pistol, he must have been working on it all night while I was asleep and pulled it completely out. He was so mad about it all yesterday. Woody freaked out, I laughed, and called the nurse. She asked the doctor and he said it was o.k. because they were going to take it out anyway today. Ronan just beat them to the punch:) The other thing he was so mad about yesterday was the fact that he woke up with a diaper on. Forget that he has a 6 inch incision on the side of his stomach, forget that he had a breathing tube shoved down his throat, he could not have been madder about the diaper. He is so independently proud and has been potty trained since such an early age and is always talking about how he is not a baby, because he does not wear a diaper. What a blow to his little ego;) I got them to take him off of him and he was much happier.

Today, we have been working on getting him up and moving to get his lungs working as best as possible. He is saying he can’t do it because everything hurts but then he insists on getting down from the bed alone and when I told him we were walking down the hallway he told me he couldn’t but then he practically sprinted down to the door and back. This kid, I swear, has such a fire in his soul. I have never met a stronger person in my life and he is only 3! Imagine what he is going to be like as a teenager!

One of my dear friends, Olivia, gave me such a beautiful gift today and I am sharing it with all of you. She wrote a poem for us and it brought tears to my eyes. She is such an amazing friend and is has such a pure heart and soul. Love you, Liv.

From the first flitter and flutter
He gave you to me; destined to be your mother
Never thought it would be a tough road to travel
Sometimes I want to crumble and unravel

I would gladly do anything to take your place
I see so much love and healing while looking at your beautiful face
I want to be strong for you; a mother is supposed to be tougher
But it hurts me so deep inside when I have to watch you suffer

You are a true love, so sweet and pure
Anything for you, even this, I will endure
Always by your side; every night and every day
This too shall pass, so they say

So, we will keep going through this hell
Pain and sadness is hard, but we won’t dwell
You have so much to offer; the greatest story to share
We’ll conquer the world; giving a reason to be aware

I will make sure this journey has not been in vain
We will make a difference, help to ease others pain
There is a reason for this that is greater than me and you
We will see this through and start our lives anew

From the first flitter and flutter
He gave you to me; destined to be your mother
The road has been happy, sad, and full of joy
A love to stand the ages; a story of a Mama and her boy

I wish I could post the pictures of Ro on here for you all so you could see how beautiful he looks, even though he’s just been through a major battle. I don’t have my adapter at the hospital, but I will try to get it tonight. Woody is working and as soon as he comes back I am going to sneak out for a run. Wood leaves tomorrow, but Tricia comes here on Thursday or Friday 🙂 CANNOT WAIT TO SEE MY BESTIE!!!! My mom is also coming in Friday or Saturday I think… I can’t wait!!!! Woody is returning back to AZ to handle some work things then he will be back here for my birthday on the 11th. The doctors are saying we should be able to go back home around the 17th of January. So excited for that but will be a little sad to leave here. New York has been such a positive experience and I will miss it dearly. But there will be nothing better then getting back to our home, the twins, my friends, and our dear nurses and Doctors at PCH. HI KRISTEN if you are reading this!! We miss you! Please give Sharon and Eileen the BIGGEST hug from Ronan. We can’t wait to see you all!!!

Also, wanted to say a big thank you to my boys’ teacher at Hopi, who has been keeping a special eye on my two little guys. Thank you so much, Cindy. You have no idea how thankful I am for you and how much you love Liam and Quinn and are taking extra special care of them for me while I am away. You are so much than just a teacher to us!!

Hope you all are having a beautiful day! I will try to check in later!

xoxo

The rebirth of Ronan Sean Thompson

I seriously feel like I’ve just been through labor again. I am that tired, exhausted, and so relieved. All of the same feelings that come with childbirth. Ronan’s surgery was smooth sailing. Dr. La Quaglia is a God, is blessed by God, and has angels surrounding him every second of the day. We met with him and he told us how perfectly the surgery went, how he was able to save every organ, and how great and healthy they all looked. He was very confident that he got all of the base tumor. He looked everywhere, even in his chest and under his arteries and did not see any other signs of Neuroblastoma. This does not mean we are out of the woods yet…. The Neuroblastoma is still in Ronan’s body, but the base tumor is gone. He said the tumor was about the size of the golf ball but wouldn’t let me see it due to it already being sent off to the lab. I don’t care that much; it is gone, Ronan is here, and we are so thankful. After meeting with Dr. L, we soon were taken back to see Ronan. I was so nervous but it wasn’t as hard as I thought it was going to be. Waiting for him to come out of surgery was way harder. He looked so brave and big in the bed, all hooked up to everything you could possibly imagine. The tubes didn’t freak me out at all because underneath all of that stuff was my baby boy… waiting for me. I kissed on him and told him how proud I was of him, how brave he was and how we could finally put this part of our life behind us. He kept nodding his head and was listening to every word I said. After surgery we had to be transported across the street to the Picu. The guys who were transporting us wanted Ronan as sedated as possible, but Ro wasn’t having it. They had to give him tons of medicine just to keep him calm. We heard a lot of “Wow, what a strong kid you have.” And also a lot of “He is really tall for 3.” There was a lot of laughing about Ronan and his strength. Everybody kept telling us what a good thing it was. This is par for the course with Ro… nothing is going to stop our little guy. After they finally got him sedated enough, he was transported across the street to the Picu. I rode in the ambulance with him and we were quickly moved into our room. Woody and I have been up for almost 24 hours now… my eyes are barely open. Ronan is just now getting his breathing tube out, or excavating him as they call it.

Awwww…. I tried my best to update you all last night, early this morning, but I was so tired and taking care of Ro. It is 7 a.m. here now and Ronan is asleep. He has been having a little trouble breathing on his own, so they have hooked him up to machine that is giving him a little extra oxygen. This is normal after such a major surgery. We will be moved over to Sloan this afternoon considering all goes well today. Woody slept most of the night; I did not. That’s a mama bear for you though. And Woo needs his rest; he requires much more sleep than I do. The nurses and doctors here have been amazing. So very sweet and attentive. We could not be more pleased with the job they are doing. Our nurse looks like she is about 12. She is the cutest little thing and is so great with Ronan. What a doll.

Guess how many views Ronan’s blog got yesterday?!?! 8,122! Can you believe that! In one day alone! You all were so busy spreading the word on Ronan to make sure we had everyone praying for him. I cannot say thank you enough. I know it is because of all of you, your prayers, and positive energy, that he got through yesterday with flying colors. Our little guy is going to change the world and you all are helping him. He WILL be the poster child for this awful disease. Please keep spreading the word and sharing his story. Thank you all for holding his heart in yours and going with us on this journey. We still have a very long road ahead of us; but I feel like today is a fresh start for Ronan. He is finally free of the tumor our of his abdomen. It’s as if he has been given a new life; this is his rebirth. January 3, 2010 will forever be Ronan’s second birthday. And that makes him a Capricorn, just like his mama:) Us stubborn goats can get through anything!!

Please know how much you all mean to us, even though we don’t know half of you. Your words kept me going yesterday and If it wouldn’t have been for all of you, I would have locked myself in a bathroom somewhere and would not have come out until Ronan’s surgery was over. To all of my family and friends, I love you all so much. I am so blessed and thankful for your support and love during this time in my life. I also could not have made it though yesterday without the most amazing man alive, my husband. He truly is one in a million and the best husband and father in the world. I am so lucky, thankful, and humbled.

I am seriously in the middle of an episode of Grey’s Anatomy right now. Well, minus all the sex. I was just visited by the most amazing woman Dr. and her “team” of residents. I am beyond fascinated, impressed, and the Doctor could not have been more knowledgable, kind, and positive. I got to watch her ask her questions to her residents and see them scramble for the answers. It was awesome. She said it is not often that she see’s children respond so well after such a major surgery. She said most kids lay in the Picu for days. Her exact words were, “I don’t know Ronan, but maybe he is just such a rockstar that this is just how he is.” How awesome is it that she, this incredible woman, called Ronan a Rockstar without even knowing his nickname! I loved it!!! Made my day:) Ronan will be transported back over to Sloan later this afternoon. He has been so corporative and listening to everything we tell him to do. He really is a brand new boy!

This mama has had no sleep and I don’t see sleep happening anytime soon. I am over the moon with how well Ronan is doing and I feel so fortunate that we were able to bring him here, to the best surgeon in the world. I know we made the right decision. We are right where we need to be and today we can breathe a big sigh of relief that this part of Ronan’s journey is done and over with. Bring on the Stem Cell Transplant!!!! Ronan has proven time and time again, that he can get through anything. He truly is such an inspiration and a Rockstar!! What a little blessing to the world he is.

Love you all so much. Thank you again for your support and love!!!

xoxo