Tag: Fernanda Borletti

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

Twinkle Twinkle little star

I had the worst dream last night. It was all about scan day. We woke up and got ready to go. Fernanda was downstairs waiting for us, with coffees in hand and off we went. We arrived promptly, like always, and soon Ronan was called back to anesthesia; I held him tightly as they injected him with his Propofol, and kissed him as he went to sleep. I left him on the table and covered him up with his blanket, Gigi. Out in the waiting room I went and fell into Fernanda’s arms. Leaving Ro for anesthesia is never easy on me, especially without Dr. Maze there to be the one to take care of my little guy. Fernanda and I gathered up our things and pushed Ronan’s stroller up to floor 9 to let the waiting begin. And wait we did. For fucking ever. I think we sat for a good 2 hours. Fernanda tried her best to distract me with her her stories; but there was nothing that could take my mind off of the things to come. Soon, I saw Dr. Kusher, the man I had been waiting for. He was back doing Ronan’s bone marrow aspirations. He breezed right past me without making eye contact. This was my first clue. My stomach dropped to the floor. Fernanda goes, “There he is, let’s chase him down to see what the results said!” I just looked at her and told her no. He knew we were waiting and would get to us when he was ready. By this time, Ronan was waking up from the anesthesia. We went back to get him and my little groggy guy just wanted to be in my arms. I put on his pants and shoes and picked him up. We went back to the waiting room to wait once again, for Dr. Kushner. We sat and waited and fed Ronan some food as he was hungry. As I was getting up to do something, my Claude necklace, the one that I always have around my neck for important days; that has the tooth of St. Claude in it, fell to the ground. It had somehow come detached from the chain and I scrambled to pick it up. I picked it up and tried to figure out where it had come detached. So weird, I thought to myself, as the clasp was not broken. I did my best to ignore the St. Claude incident and told myself it was not a sign. I didn’t even tell Fernanda this which is not like me at all. I tell her everything. Soon, the kid at the front desk told us Dr. Kushner was ready for us. We were taken back to room 7 to meet with him. As soon as I saw him my stomach dropped to the floor. He couldn’t even look me in the eyes. I looked at him and said, “No no no no no no no.” His eyes were wet and he said in his weakest voice something like, “The cancer is spreading. The chemo did not work.” I clutched Ronan, sat down in a chair because I was going to pass out. I don’t remember much more. At some point, he recommended we call Woody on speaker phone. I sat there and listened as Dr. Kushner tried to explain things to Woody. I watched him as his eyes kept getting wet. At one point I asked him if he could please give me just an ounce of hope. Just one ounce… something. He looked at the floor. I went into shock and asked him if this ever gets any easier for him. I told him it couldn’t possibly ever get easier. He got up and turned his back to me. Where did the man go that said he would fight for my baby with everything he had? Because that man in front of me was nowhere to be found. I saw a coward. A man who had completely given up on my child. I somehow gathered my strength and got up. I gave him a hug and told him thank you. I told him he was a good man. I walked out of the doors to his office with Ronan running beside me. Dr. Kushner, the man I had put all of my faith into, had given up on my child and there was no looking back.

Fernanda and I walked back to the RMH. I remember nothing about getting back to our room. All I knew is I wanted to get home, back to Phoenix, asap. I curled up on my bed while Ronan ran around like mad and Fernanda buzzed in the background making travel arrangements and figuring out what to do next. I remember something being said about needing to get me Valium. I remember sitting on the floor playing with Ronan and drinking a coconut water. I remember taking the coconut water and throwing it as hard as I could across the room while I watched it hit the wall and liquid splashed everywhere. I told Ronan we were having a party and I wanted to see if my water would explode. He then took a can of root beer and poured it everywhere to make it explode like a volcano. I think Fernanda got in on the fun and dumped her Diet Coke all over the floor on a blanket on purpose. We sat and had a fucking pop throwing party because what else could we do? It made perfect sense at the time. She then spent the next 7 hours packing up our room, running all over the city to buy more suitcases for all of our shit, did laundry, cleaned our place, got me my Valium, composed an email to Dr. Mosse at CHOP regarding starting Ronan on MIBG therapy and we finally got Ronan into bed so he would settle down to sleep. Fernanda watched as I rubbed his back and he asked me to sing him “Twinkle Twinkle Little Star.” I sang to him our song as I do every night. We all fell asleep around 2 a.m. Our alarm woke us up at 3:30 a.m. as our car was picking us up at 4 a.m. to get us to the airport. 9 suitcases checked later and we were at our gate. The flight was blurry and Ronan slept much of the way. I did too due to the Valium and Ambien. I asked Fernanda for more Valium and she told me no. I cried on our flight and watched her cry by herself in the aisle across from me. She looked like an angel. I woke up at one point and looked down at Ronan and I saw his pinky intertwined with mine. That’s how I know this is all a nightmare and none of this is true. Because his little pinky of his refuses to let go of mine, even when we are both in a deep, deep sleep. As we were getting off of our flight I hugged Fernanda tight and told her that she was the best friend I have ever had and how nobody else would have done this for me. She told me there were a million people who would have done this for me and I then told her yes, but not the way that she did. She came in, in the middle of the biggest storm of my life and attacked it head on and beat the fuck out of it. I have no idea how in the world she did this and I kept offering to have Woody fly out to help us. She looked at me like I was crazy and yelled at me “For what?!?! We can do this! I’ve got it under control!” I’ve learned not to argue with a Mexican Goddess. You will never win.

I somehow made it home, back to the cleanest house possible and to my twins and in-laws. Before I knew it I was in my bed and passed out. I woke up to my husband and 3 boys playing away. The days are blurred and I’m not really sure what is going on. I went out this morning to meet up with my Mr. Sparkly Eyes. I told him how disappointed I was in Dr. Kushner and how I am learning to lower my expectations of people because I set the bar so high. He agreed with me and also tried help me understand that he is sure Dr. Kushner feels like he failed us and is heartbroken. I told him I understood that, but all I wanted was for him to have a bit of decency and compassion which I felt he completely lacked. I just want somebody to be mad at and I know that is not fair, but I have a right to be mad at the way things were handled. Dr. Kushner had his freaking assistant call Woody today to tell him he thinks we should go to CHOP for MIBG. He didn’t even call Woody himself. That is not only rude, but classless. And this is a man that I completely respected, but I have come to find out that when push comes to shove and times turn to the darkest hour, the people who you think will be there until the end for you, can turn on you in a heartbeat. I told Mr. Sparkly Eyes that we refuse to give up and as long as Ronan is still fighting, we will fight as well. He more than agreed and promised to never give up on Ronan, told me that he, himself, is not going anywhere and all I have to do is say the word and he will be at our home to sit with me or whatever I need. I told him how I didn’t know how I was going to write this post, as I have been trying for days but lacked the words. He told me to just be honest, like I always have been. So here I sit, writing the most honest words that I have ever had to write in my life.

I had my house full of my dear friends and family today helping to get everything unpacked. Stacy, Karen, Liz, Fernanda, Heidi, and Mrs. Martin all buzzed around doing everything they could. I don’t think I’ve done much of anything except Heidi got me out for a pedi/mani and I got to see Marisa who met me at my nail salon to hold me.

What’s next? First, I have to wake up from this nightmare because I refuse to believe it is real. Ronan is running around like mad, playing with his brothers and having lightsaber wars with his favorite cousin, Luke. Once I wake up, we plan on getting on a plane this Tuesday to take Ronan to Chop to start him on MIBG therapy. This is a fairly short therapy, but intense. We will get Ronan through this. As my friend, Ed said to me, “It takes one child to change the odds.” That is the best thing I’ve had said to me all week. Until we leave on Tuesday, I’m going to do my best to get thought these next days. I’m going to hug all of my boys extra tight and surround myself with all the love I can get. As much as I want crawl up in my bed and not come out, I have 3 boys, and a husband whom I love more than the stars combined to try to remain strong for. I still have hope, faith, and a belief that Ronan will be the miracle to come out of this.

I love you all. Thank you for your continued love, support and prayers. This is not even close to being over and we will never give up on our Ro.

xoxo

P.S. If any of you ever see that angel of mine, Fernanda Borletti on the streets, at the grocery store, at school, wherever….. please wrap your arms around her and whisper to her that she is an angel on this earth. She deserves a god damn Noble Peace Prize.

No news is good news, yes??

I find it impossible that I am even still standing after today. Let alone, writing this post. I’m not sure how I’m even awake at this point. I didn’t much sleep last night and we woke up early to get Ronan ready for his day. He was mad that I woke him up from his peaceful slumber and even more mad that he had to drink his contrast before we could head to the hospital for his CT scan. I power talked him though it, although he fought me the entire time. Ronan is such a hard headed little boy and after battling with him almost the entire day, I am mentally beat. There was a lot of distracting, playing, bribing, and threatening today to get him through what we had to do. I have am so glad to be in our bed and over with today and am not looking forward to tomorrow at all. Scan days are always brutal and I know 110% that I would have crumbled today had it not been for Fernanda. She was such a big help.

We arrived to the clinic and were told that Ronan needed platelets again because his were still very low despite the platelets he received yesterday. We had plenty of time before our CT scan was scheduled so we went and got his platelets started. While we were getting them, Ronan fell asleep on the little couch next to me. Fernanda and I sat and watched him sleep and quietly talked. We both tried to block out the sounds of the screaming boy next to us who was about Ronan’s age. The poor thing must have screamed bloody murder for a good half an hour. I felt so helpless and so sad for the child and parents. I told Fernanda sometimes watching the parents go through this is almost harder than watching the kids. It is a lose lose situation for everyone involved and never gets any easier to see.

After Ronan was finished with his platelets, we headed down to get his CT scan done. I must have been told by 5 different people that he needed to be ready for anesthesia, even though I told everyone that he didn’t need it today. We got down to the CT room and sure enough the nurse came up to me and on her piece of paper says the word, Anesthesia, in big red letters. As soon as I saw this I told her that Ronan would not need anesthesia today. She looked at me like I had three heads and said that she wasn’t told this but that we could try it without, first. We went back to the room and I put Ronan on the table as he clutched onto his Star Wars guys. I had prepped him all morning for how he had to hold still and how it was going to be a piece of cake, just like radiation. He understood the drill and was very excited that I was able to stay in the room with him this time, unlike RT where I had to leave him all alone. The whole CT scan took about 10 minutes. He held so still and I acted out a scene from Star Wars for him with his Clone Troopers and told him all about the secret mission they were going on with him. He smiled the entire time and listened with his big eyes looking up at the CT machine. I was so proud of him; once again. He truly amazes me with how brave and strong he is. When we finished, all the techs told them how great of a job he did and he gave them all knuckles as he walked out the door. Such a little Rockstar, my Ronan.

I’m not sure where the rest of the day went. We had to wait around forever to get Ronan’s MIBG injection for tomorrow’s scans. We ran out for a bit and went to Dylan’s Candy Shop which I am totally over at this point. Four trips there, in the past 3 weeks for overpriced candy and you cannot even move in the store due to it being jam packed with people. If I never have to see that place again, I will be so happy. And this coming from me, an avid candy connoisseur, is huge. I’m done with that place. After Dylan’s, Fernanda was about to pass out from being on the “Maya diet,” which consists of not eating, so I took her to 4 carrots to eat. I pretended to eat a half of a sandwich for her, but she busted me and gave me a very stern but loving talking to about my lack of food. Ronan and Fernanda ate which was all that mattered to me. I did take a small Fro Yo to go and ate the whole thing for her. That’s the best I could do today.

I asked a few times if Dr. Kushner would read the results of the CT for me today and I got put off which I kind of expected. Everybody reassured me that if there was something that was not good, he would have come to talk to me. I hope they are not eating their words tomorrow. I’m going with the no news, is good news approach tonight so I can hopefully sleep a little easier.

We got back to the RMH later this afternoon and Fernanda hung out for a while. I practically had to force her out the door and told her to get some rest even though she tried to say she was coming back later this evening. I was not having it as she needs her rest too. My friends, Ed and Diane who are in town with their two little boys came by to see us. We had been looking forward to seeing them all day. They came armed with enough toys for Christmas. Ronan was in heaven not only because of the toys, but even more so because he had two boys to play with. He should have been wiped out from today, but he ran around here and played with those two until 9:45 tonight. It was so good for him and made him so happy. Thank you, Ed and Di. You two and your boys were just what we needed after a long and hard hospital day. I am so blessed to call you my friends.

Alright my dears. This is all I have tonight. I hope you all had a beautiful day full of many blessings. Tomorrow is a huge day for us and I am going to be channeling all of your strength and love. Sweetest dreams to you all.

xoxo

The circle of life…. sucks

We woke up early this morning and ready for our clinic day. Fernanda, who flew all night arrived just as we were getting ready and ran down the street before seeing us to grab me a coffee. Ronan and I went out on the street to meet her and I cannot tell you the wave of happiness that washed over me as I saw my friend and her gorgeous smile, waiting across the street for me with two coffees in her hands. I was so happy to see her and we held each other tight as we embraced for our hug. She has such a way with me and I am instantly comforted by her mothering instants. I often feel like she is not only helping me take care of Ronan, but she is so good at taking care of me as well. I usually have a hard time letting go and letting other people do things for me but with Fernanda, it just comes naturally. I feel like she is my female version of Woody, if that makes sense. She is a source of such strength and comfort to me, much in the way that Woody is. I always know that when Fernanda is around, that everything is going to be o.k. Trish asked me tonight how in the world Fernanda does it all. My reply was because she’s Mary Freaking Poppins. Seriously. There are not many women in the world like her. We have such a strong connection and I am often amazed at the way we sync so well. Many times, I will be thinking about her, and then 10 seconds later she will call or text me. Our minds seem to be thinking the same thing and all I have to do is look at her to know this. Words are sometimes not even necessary. I am so honored, blessed, and thankful to have her here with me. I will never get over her leaving her 5 beautiful babies and husband at home to help me and as much as I tell her this, she acts as if it is nothing, but it means the world to me.

After I reunited with Fernanda, we headed off to Sloan to get Ronan to the clinic for his platelets. He was not happy about going and being “hooked up,” as he calls it. But I assured him it would only be for a short amount of time. We arrived and the nurse got things moving pretty quickly. Ronan was entertained by Fernanda waiting on him hand and foot and we promised him a trip to Toys R Us after we were done. We finished with our platelets quickly and went to meet with one of  “The Team,” members to discuss the plan for the next couple of days as far as scans go. Ronan coroporated for his exam and we were soon out of the door and off to enjoy the rest of the day. We decided to walk to Toys R Us, which was about 3 miles away but Fernanda and I agreed that the exercise and fresh air would be good. Almost as soon as we started our walk, Ronan fell asleep in the stroller and remained that way the entire trip there. It was a fairly wet, dreary, New York day, but I am such a sucker for this weather that I enjoyed walking in the rain.

Toys R Us was a hit but it was packed full of so many people. With Passover, Easter, and Spring Break here, the streets of New York are just as busy as Christmas. We couldn’t escape there soon enough and hailed a cab back to RMH instead of walking again. Fernanda picked up food at Delizia’s for us and we ate it together on the second floor in the community dining area. After lunch, she headed back to where she is staying so she could get in a little nap. Ronan and I were both tired too, so we came back to our room to rest. Before we came back to our room we went to check to see if we had any mail. We were told we did and it was a big box from our favorite little boys’ line; Fore!! Axel&Hudson. We took the box up to our room and I helped Ronan open it up. It was full of the most adorable clothes and hats for Ronan, as well as the cutest little girl Fedora hats. I handed out the hats to a bunch of the girls here and they were so excited. I think the moms were more excited as they kept trying to see if they would fit their heads. It made me feel so good to light up the faces of these beautiful girls today. Thank you Denise, for allowing me to hand out such amazing gifts. Ronan, being the stylish kid he is, lit up like it was Christmas. He kept trying to wear three hats on his head at once as he said he couldn’t choose because he loved them all. Denise, if you are reading this, please know that you and your company are absolutely amazing to support pediatric cancer the way you do. You are inspiring, brilliant, and if the world were full of more people like your company, it would be a much better place. Not to mention, the quality of your clothes are to die for! I am so proud to put my little Rockstar in your gear. Thank you from the bottom of our hearts. Everybody needs to check out their website, I should have a link on the side of my blog. I will forever support you and your clothing line. It makes Ronan’s day to be all dressed up in your adorable boy clothes and hats.

After we woke up, Fernanda texted me to say she was ready to come back over so I could go on a run while she watched Ronan. My run didn’t end up happening as we went across the street to Barbra’s apartment, who runs the organization Candlelighters, as she had a Star Wars treat for Ro and I wanted her to meet him anyway. We stayed for about an hour and enjoyed the company of Barbra, her husband, another mom, and her son, Jack. It was soon getting late so we headed out to grab dinner before Ronan got too tired. We sat and I ate for Fernanda. She talked me into some protein and asked if I really wanted to eat it or if I was just doing it for her. I told her it was all just for her and I did the best I could on the food in front of me. She is such a mother hen, which is a very good thing for me now. There was some awful woman sitting next to us at dinner and I was wondering if I was the only one picking up on it, but I gave Fernanda my look and I knew she knew it too. She kept looking at Ronan and it was if she wanted to throw up her dinner. She kept giving us the dirtiest looks and I wanted to say to her, “I’m sorry, if the fact that my child has cancer bothers you so badly that you can’t  eat.” The look of disgust on her face was so obvious that I wanted to go over and strangle her. When we were walking out we got a few more looks or more like complete stares. I noticed them all and Fernanda did too. She totally gets what I was talking about yesterday on my blog. The staring is everywhere. If you’re at least going to stare, have the balls to come up to me and say “God bless you.” Or “We’ll keep him in our prayers.” Don’t just be rude and stare. Grow some fucking balls and be proactive about him, who has a name. His name is Ronan Thompson, and he lives on this fucking planet. Stop acting like he’s from outer space. Somethings gotta change because if this  keeps going on, I may go postal on someone’s ass. After dinner we came back to RMH and played with Ronan. He was tired from todays events, as we all were. Fernanda hailed a cab and went back to her place. After she left, Ronan decided he was still hungry and he wanted scrambled eggs to eat. I happily made them for him with extra butter and extra cheese. Anything to fatten my baby up. We sat while he ate and talked with some of our friends here. I’m not going to go into details but I am saying extra prayers tonight for a very special little girl here whose mother I have fallen in love with. She isn’t doing too well and watching what the mother and father are going through is heart wrenching. It is a place that no parent wants to be and all I can say is another big Fuck You to cancer because there are no other words.

While I was taking Ronan upstairs to get ready for bed I was talking to Woody. I guess he told me last night but I was asleep and don’t remember our conversation, but our little wiener dog, Monroe, passed away. As soon as he said those words the conversion we had the night before slowly started to creep into my head. I started sobbing hysterically. Our two dogs, Monroe and Douglas haven’t lived with us for about 3 years due to trying to sell our house, then selling it and moving into our new house, so they have lived with Woody’s parents who also had 2 wiener dogs. While my 2 were there, one of their dogs passed away so we just ended up leaving our 2 so they could be with the one dog Kay and Charlie had left. They were happy there, together, and Woody’s parents have the perfect back yard for the 3 little musketeers. We missed them a lot but life all of a sudden got so busy, and we would spend time with them when we went over to their house. Little Ro, as we called her was an itty bitty thing. She loved to lick you and be held and was always shivering because she was cold. She was the sweetest thing. Hearing that she passed away hit me harder than I though it was going to, considering what we are dealing with now. It still made me very upset as it’s watching the cycle of life and that is never an easy thing. Woody bought those dogs for me before we got married. They were our first, “babies.” Tonight, I will say a little prayer for my little mohawked Monroe. She was the best puck rock Dachshund that ever lived. R.I.P little Ro. I’m sure we’ll hear your barking all the way down from heaven:) We all loved you so much.

So tomorrow. Ronan has a CT scan at 11:30 and we are tying to do it without anesthesia which I totally think he can handle. We of course need this scan to be good and I know they will be good. I have faith, hope, and love surrounding me at all times, so it cannot go another way. Please pray for him extra hard tonight. I will update you as soon as I can.  Thank you all my beautiful souls. You keep me strong when I am at my weakest and you push me forward when I think I can go no more. With all of you on our side, we can get my baby boy through this. Cancer has no idea how strong of a child he is and who they are messing with. They picked the wrong Ronan “Fucking” Thompson. I wonder when Ronan does beat this if they would really let me change his middle name to that. I’m sure not, but writing it out cracked me up tonight. He surely deserves it. My strong son, my strong boy, he will not be defeated. He is going to come out the other side of this with such determination to do amazing things in life. I cannot wait to see what kinds of things he comes up with and I will fully support him in everything he does. A mothers love is an unrivaled force of nature.

Ambien kicking in. I’d better get off this computer before I start writing crazy things. Good thing I don’t have a car to drive;) Totally kidding. I am going to cozy up in my twin sized queen converted bed with the most beautiful boy in the world. Just don’t tell my husband.

G’nite peeps!!!! Have a beautiful day tomorrow. G’nite Daddy Woo, Liam, and Quinn. Miss you!

Extra special G’nite to my twins’ 1st grade teacher, Mrs. Martin. Hope you had a beautiful birthday day, Cindy. You deserve it so much for being the best teacher we’ve ever had. We love you so much.

xoxo

Strangers on the Streets

Ronan and I slept about 9 hours last night. We both needed it as we were wiped out. After we woke up and got ready, we headed off to the clinic to have his labs drawn. He was not excited about going to the hospital today, but I promised him a trip to Dylan’s Candy Shop after. A little bribery works every time:) We went to the clinic, had Ronan’s labs drawn and I must have had my cancer brain completely turned on because instead of waiting around for his counts to come back, we just left. I don’t know where my head was today. I took Ronan to Dylan’s and then we went to Bloomingdales, Four Carrots, for lunch. I can thank my friend, Ellen, for introducing me to this spot. Ronan ate a ton and I let him have the worlds best frozen yogurt afterwords. He was in heaven. After a few hours out in the city, we started our walk back to the RMH. I looked at my phone and realized that I had missed a couple of calls from Sloan. I listened to the voicemail and it was one of the nurses saying that Ronan needed platelets as his counts were only 18,000 and they like to keep them over 30,000. Major cancer brain mush on my part. I said we could come back in, but I knew how upset Ronan was going to be. The nurse told me as long as we could come in early tomorrow morning, it wasn’t a problem. Good thing. Getting Ronan to go back to the hospital would have been a major ordeal. We came back to the RMH and I fed him dinner. We spent the rest of the evening playing in the playroom and then we came back upstairs to give him a bath. He didn’t nap today so he is pretty beat. He fell asleep about an hour ago and I am thinking he will be out for the night. We have an early day tomorrow so that is a good thing. Fernanda gets in at 6 a.m. and I cannot wait to see her. I could really use some of her amazing strength to recharge me right now.

While we were out in the city today I tried my hardest to ignore the looks we now get from strangers everywhere. The looks from strangers on the streets are now looks of pity, looks of sadness, and as strong as I try to be… these looks kill me. It is a constant reminder of what we are up against. Most people are extra sweet to us, everybody says how beautiful Ronan is, and I must have been asked 1o times today how he is doing. What am I supposed to say to this? I say the only thing I can; while fighting back the tears and plastering a huge smile on my face. I say he is doing great and is a very strong little boy. I am sure these strangers on the streets only have the best intentions, but all I want is feel normal for 5 minutes out of the day. All I want to do is to not be felt sorry for. I guess this is why I am so comfortable in our hospital environment. Being out in the real world takes so much energy and can be so draining. I feel like I am on constant guard to not only protect Ronan, but myself as well. When I’m out in the real world, with Ronan, my guard is up 110%. I wish I could tell these people, stop with the looks of pity, instead take this gift of mine and go and do something amazing in the world. Go make this world a better place because you are inspired by my sweet baby boy because your own problems aren’t half as bad as you think they are. I swear I’m going to start wearing a sign around my neck that says this. Ronan is something to be inspired by, not something to feel sorry for. Yes, he has a tough road ahead of him but he will win this fight and be an even more amazing of a human being because of it.

Alright my sweet friends. I never indulge in T.V. anymore but with Ronan sleeping soundly, I’m going to enjoy my favorite reality show, “Bethanny Ever After.” I love Bethanny Frankel and her show. She cracks me up. I hope you all had a wonderful day and have an extra sweet night. Love you all.

xoxo

Ladies and Gentleman….. we have an ANC!

Finally! Ronan’s little immune system is coming back. It was only at 200 today, but it if finally making an appearance. I was starting to get really worried and frustrated. This can only mean good things to come… it means Ronan will more than likely be able to get out of this hospital soon and enjoy some freedom. They are not giving me a discharge date yet… but I am pushing for tomorrow. I have not heard what time his scans will be tomorrow and am waiting to speak with one of the doctors. I am trying not to get too nervous… but these scans have to show us good news so we can figure out what our next step is as far as Ronan’s treatment goes.

We have played non-stop today. It was a big arts and crafts day in our room. I went on a hunt and found us everything I could find to let us make a mess and have some fun in our room. We got messy with glue, paints, markers, stickers. We have been up and about a lot and I even got our nurse to unhook Ronan from his “asspole,” for about 20 minutes so we could run around crazy in the halls. He was so excited to be unhooked and kept telling me it was the best day ever. He is going to be so happy when we finally get out of here.

Liam, Quinn, and Woody are on a plane as we speak. They are landing around 8:00 tonight. It will be so nice to have them here and to all be together. The plan is for them to come to the hospital, sneak in a quick visit with Ronan, and I will take the boys back to the RMH and Woody will stay the night here. I am thinking this is a good idea as I have not been out of the hospital in 48 hours and I am starting the freak out a bit. I need fresh air, I need a shower, I need a full night of sleep. It will be good to spend some time with the twins too. It kills me how much I miss them.

I am waiting to talk to one of the doctors on the floor. I asked our nurse about the scans and she said that they had changed them until next week. 5.4.3.2.1- Remain calm. I told asked her to please get a doctor in here as we were not  told about these changes. I also explained to her that Woody was flying in tonight just so he could be here on scan week, which we were told would be tomorrow and Wednesday. After speaking with the on call doctor, she told me that “The Team,” met tonight and decided that they wanted Ronan’s counts to come up some more before doing the scans. Especially since they are doing a bone marrow test. They want his bone marrow to recover more before they go in and test it. I understand fully, but it still is frustrating. But it’s not in our hands so we once again will just have to roll with it. If his counts keep coming up we will do the scans at the end of the week. If not, next week will have to do. It will be fine either way. Woody and the boys are leaving on Sunday but Fernanda will be here Monday-Friday so she can be with me. So thankful for the amazing friends surrounding me and helping me through this. I can’t wait to see her and cannot believe she is leaving her 5 kids to be with me. The thought alone is enough to make me burst into tears. So.Very.Blessed.

Woody and the boys arrived safe and sound. They came directly to Sloan and Ronan and I sat in the lobby and waited for them in front of the elevators. He was so excited to see his brothers and Daddy. It was a quick reunion, as Liam and Quinn are not allowed on the floor. I grabbed my things, kissed Woo and Ro goodnight, and headed out for some much-needed fresh air and time with my favorite twins. We dropped our bags off at the RMH and then I took them to get something to eat. I was worried that Delizia’s was going to be closed, as it was already 11 p.m. I was happy to find out they stay open until 1 a.m. My kind of place. I sat with my two boys and listened as they chatted away. They had so much to say tonight and I was in heaven. I had my usual soup and they both chowed down on pizza. While we were in the middle of dinner, I had remembered that I forget to leave Woody saline solution for his contact lenses. I texted him to ask if he needed his things and he said he did and that he was hungry as well. I told him that I would bring him his things and pizza. The boys and I gathered up our things and went back down to Sloan to drop everything off to Woody and Ro. We had such a good time on our rainy and windy walk there. No complaints at all from my little men who were beyond tired; they were just happy to be with me. I so felt the love tonight. I love my Liam and Quinn so much. I miss them so much when I am away for so long. This is going to be a good week. Quinn was so excited talking all about New York Miss Macy coming into town. Liam goes, “Who’s Macy?” Quinn’s response was adorable. He goes, “You don’t know who Macy is?! I can’t believe you don’t know who Macy is. She’s one of mom’s funnest friends.” I was dying at his response. It’s like Macy is a celebrity in his eyes and everyone should know her. Beyond adorable. I can’t wait to spend some time with her this weekend with my boys. Wooddawg is excited too. Spirit Hoods will reunite!!

I’m all tapped out tonight and I’ve got Quinn in bed sound asleep beside me. Liam is in the bed next to us passed out as well. It’s pouring down rain here and that is my favorite thing in the world to fall asleep to. Hoping for some peaceful dreams tonight and to get a full nights sleep. We shall see. Sweetest dreams to you all. Have a beautiful day tomorrow. Love you. Go Ronan’s ANC!!!!

xoxo

Welcome back, hospital insomnia

Beeping machines. Check. Headache. Check. Cold hospital room. Check. Missing Woody. Check. Hospital insomnia back. Check. Check. Check. Where does this leave me? Miserable. With a foggy head. I really, really, tried to go to sleep without my sleepy meds tonight, because I thought I left them at the RMH. I’ve lain awake for 3 freaking hours now. Tossing. Turning. Had a slight panic attack and thought I couldn’t breathe. It was only out of sheer terror and desperation that I dug though another overnight bag and thank the lord, found my Ambien. Waiting for it to kick in and trying to ignore the little voices in the back of my head saying they can’t believe I have to take prescription meds to go to sleep. STFU. Nothing to feel guilty about… but was all so foreign to me, until now. I gag taking Advil. Never in my life had I had to take medication to sleep. Sleep always came so easily and peacefully to me. Guess that changes when your child gets cancer. At least it has for me. Everything has changed.

I tossed and turned and sat and over-analyzed everything like I always do. I worried myself into a panic about a friend who is flying back to Phoenix tonight. I told him I needed to know he was safe so I could sleep better. I texted Woody to let me know when he arrived to Phoenix because I needed to know that he and Quinn were safe. I sat and obsessed over these things tonight for I cannot take something else happening to the people I love. Now, I will sit here and obsess over my mom getting into New York safely and hoping that she easily finds her way to the RMH. She’s never been to New York and I can tell she is nervous. I wish I could be there to meet her but all I can do is sit and wait for her to call so I know she’s o.k. I worry a lot when I don’t sleep and my overactive imagination goes into full effect. Then there’s the damn beep beep of Ronan’s fucking pole again. I have to get up, buzz the nurse, and say, “We’re beeping!” I’ve done this only 5 times tonight. Awesomeness. I much prefer my coma induced state of sleep that I was able to have the past few nights while I slept at the RMH with Quinn. My little blue friends better start working soon or I am going to be a zombie tomorrow and I hate being that way. I was so looking forward to some nice time with my mom and Ronan… do not want grumpy Maya to make an appearance. Nobody likes her.

Our roommate is really sick. So sick that I can’t sleep because I am so sad for him. He has a very rare form of brain cancer. He has a big bump on his head from it and can’t really talk or move. He is a little younger than Ronan, with the most beautiful face and the longest eyelashes. His parents are such good parents too. You can tell that they are as in love with each other as they are their son who is fighting so desperately hard for his little life. They sit and play memory and other games with him all day, but he gets tired easily. Today, he slept the entire day and has thrown up on and off. I wish I had a magic wand to make him all better. If love could fix the problem, he would be healed because the way his mom loves him is one of the most beautiful things I’ve ever seen in my life. She is a very good mom. And you all know I have high standards. It takes a lot for me to call another mom a good mom, and this lady should win mama of the year. Her patience, love, and kindness for her child makes me smile. It gives me hope that he is going to be fine; just like Ronan.

You know how I know Ronan is going to be fine?? Because of my insight. And because of the very insightful people who I surround myself with and they know it too. Like Mr. Sparkly Eyes, who I was texting a couple of days ago after I was having a bad day and I told him I just needed to hear him tell me that everything was going to be o.k. He responded with “I do believe Ro will overcome this.” He wouldn’t just say this to me if he didn’t feel it or believe in it. Same with Fernanda. She has great insight to things and told me this morning that she has no doubt that Ronan is going to be o.k… and she will watch him grow up into a beautiful teenager. There is something about the two of them that I trust and believe in what they are saying 110%. They are my Ronan whispers. I don’t see Ronan not surviving this and maybe I’m biased because he’s my child and maybe this is the way every mother feels when facing this situation…. but I don’t know. I just have such a strong sense that these hard and scary times are going to be worth it because in the end, he will still be here; where he belongs which is on this earth doing amazing things. Woody and I both know it is going to take a lot of work to get our son back, but we both do not doubt that it will happen and we are in the best place where they are going to make sure it happens. I have an inner peace about this. I trust my insights, my gut, the flashes of things I get that pertain to my life. TRUSTTRUSTTRUST. This is all happening for a very good reason. A huge mother-fucking rainbow at the end of the storm!!!!!!!!!

Holla!!! New York better be prepared! Miss Macy is coming for a visit!!!!! I’m so excited! She just sent me a text saying she will be here April 14-17th. I have the most amazing friends that refuse to let me be here alone and are filling in for Woody when he is gone. Trish has her ticket booked, Fernanda is coming, Niki, Stacy, Tiffany, and I have a whole line-up of people who are dying to come out next to help. I love my friends so much. I don’t know what I would do without them.

Alright. Officially getting tired due to my “friends” starting to work. Thank GOD for Ambien. Nighty Night peeps!

Jar of hearts

Tonight, I honestly sat here and could not remember what month it was. It literally took me opening up my calendar on my computer to figure it out. That is how fried my brain is. What even happened today?? I’ll have to sit back and reflect so that I can tell you. We were all tired from a rough night, so slept until around 10:30 East Coast time…. 7:30 your time. Seemed so late but it really wasn’t as we have not adjusted to the time change yet. Once Ronan was up, we spent the morning playing and I snuck out around 1 to go back to the Ronald McDonald House to shower and change clothes. I called Fernanda and had a hard time talking to her due to just having a hard couple of days. I hung up with her and ended up being hysterical so I called Auntie Karen as I really needed to hear her voice. I just could not stop crying this afternoon, no matter who I talked to. After I hung up with her, I decided that I needed to go on a run. I laced up my shoes, and headed to Central Park. I cried most of the way… WTF?? I cannot seem to hold it together when I am away from Ronan. I do well with him, but when I’m by myself, I seem to have a hard time. My run was alright, gorgeous day, but I only ran about 5 miles due to my pounding headache and lack of energy. I came back to the RMH, took the hottest shower possible, and somehow managed to throw a bag together to head back to Sloan. I ran to Starbucks before heading back to the hospital and caught a glimpse of myself in a window as I passed by it. I had to laugh out loud at the outfit I had dressed myself in. To say I looked like a cute hobo is pushing it…. I was a mess from head to toe and topped it off with my favorite bright green North Face fleece hat on top of my head. Seeing myself gave me a good chuckle which is something that I really needed at the time. I sat in Starbucks and waited for my coffee and called Tricia to check in…the conversation started by me telling her that this cannot all possibly be real, that I still don’t believe it, because no matter how wild of an imagination I have, even I couldn’t make up the crap we have been through the past few days. I ended up bawling while on the phone with her in front of a coffee shop full of people. I don’t even care anymore…. I don’t care how ridiculous I looked, the stares, the wondering on people’s faces. I love that in this city, full of so many people, that I can completely break down and it doesn’t phase me in the least. I’m not going to hide my tears here; I’m tired of hiding them back home due to being so worried about my twins seeing me or because I am so caught up in our everyday life that it numbs me. Here, I am not numb, and as painful as it is, it is therapeutic in a way as well.

I returned back to the hospital to a very happy baby boy who was sweet as pie. He was so happy to see me. Woody was in bed with him and they had been playing Star Wars. It was so adorable to come back to. Ronan was due to get his second round of radiation at 6 p.m. so I told Woody to go shower as I didn’t want to be alone for it again. He left and soon after Ronan got sick to his stomach due to the chemo. They are giving him round the clock anti-nausea meds, but that isn’t enough. I had them give him another dose of something else before we headed down to the second floor for his “pictures.” Woody arrived just in time and we headed down to get started. Once again, Ronan was a champ. I set him up on the table, and watched as they raised him up high to start his treatment. Woody and I both kissed him and said we would see him in a few minutes and we left the room. We watched him on the monitors and talked to him the entire time. I cried once again. It’s really hard for me to watch him do this. The whole thing took was super fast today and took only a few minutes. So glad for that and so thankful he is not needing sleepy meds to do this. It makes it so much easier.

After radiation, we came back to the room and Woody ran out to get pizza from Ro’s favorite place and soup for me. Ronan didn’t eat much due to still being a little sick to his stomach but I did get him to eat a few noodles. We had a little bit of a scare while we were sitting in our room. Ronan was on my lap, shooting his pistol gun, and I looked down and he had completely stopped what he was doing and he was out like a light. I tried for about 30 seconds to wake him up, but he was out cold. I flipped out, told Woody he had passed out and to call the nurse which he did. I got him to wake up and within seconds we had a few doctors and nurses in our room checking his blood pressure and heart rate; all which were fine. I’m not sure what happened.. I don’t think he passed out as in fainted, but passed out as in from exhaustion. I think it was a combo of not napping today, chemo, radiation, morphine and anti-nausea meds that hit him all at once. It scared me to say the least. He ended up being fine and woke up and played for the next hour. I asked the doctor to reduce the amount of morphine they are giving him as I think it is making him a little loopy. They decreased it and he seems to be sleeping peacefully.

Woody is out like a light as well. He is beyond beat and is having a hard time too. It’s hard for me to see him this way, as I am so used to him playing the strong, lawyer, perfect husband and daddy role. Tonight he told me he is scared, which I of course already knew, but hearing him say those words is really hard on me. I’m trying my best to keep my ass kicking attitude going here, but it is hard when I know Ronan is in so much pain. This radiation just has to work on his arm so he can go back to the kid with cancer, who doesn’t feel a thing. I want my “healthy” boy back so badly.

I talked to Quinn and Liam tonight to tell them goodnight. I miss them every second of the day. We all do. I talked to them in my strongest voice and told them how much I love them and missed them. They sounded happy which gives me peace. Thank you Mimi and Papa for taking such good care of them. Thank you Lindsey for the text you just sent me with a picture of the full moon tonight saying you love me to the moon and back. After you sent me that text, I got up out of bed just so I could go and look out the window at the same moon as you. I love you to the moon and back too.

Time to get some rest here. Kisses and love to you all. Hope you are having a beautiful weekend. Thanks for checking in on us.

xoxo

Us right after radiation. That’s my boy:)

Sparkly stars in the sky and all the one’s right before my very eyes

These are the kind of friends I have. The kind who come over to your house in the morning, bring you coffee, insist that you give them your car keys so they can go wash and put gas in your car. Not to mention pick up your prescriptions, some pictures you had developed, all while you put up a fight in which they were not having. The kind of friends whom stop by, bringing their sweet little boy with them to play with Ronan and insist on you giving them a list. The new friend, whom you have never met before, but is dying to be a part of our lives because she and her family have been so deeply touched. The friend whom lets me drop my crew off to play with her crew while I went to my therapist. The friend who let me rant and rave all while agreeing with me that this is bullshit, and she knows because she has lived through it. The friend who drops off boxes on your doorstep so you can try to pack up your life and send it to New York. This all happened today; these amazing woman helped me though today without me even having to ask. I don’t know how I got so lucky. Thank you, Melissa, Gay, Tiffany, Pam, Stacy and Bethany. You all will really not let me fall, no matter how hard I try.
Today was busy indeed. I had a mild meltdown on the way to see “The Good Doctor.” A panic attack, an almost nervous breakdown… I had to call Marisa on my way so she could rationalize everything for me. I don’t know how I made it to my appointment without getting in a wreck. But I did. The good doctor took one look at me and knew I what a mess I was. We went over my prescriptions, the doses, and we had a short but productive talk. I felt a little better after leaving there, but my nerves were shot. I am doing my best but this week has been especially hard. I have been trying my hardest to enjoy my time with Liam, Quinn, and Ronan but the littlest things put me on edge now. Any little argument between my boys is enough to make me want to lock myself up in an insane asylum. My patience is worn thin and I have the patience of a saint. I am struggling with trying to be a normal mom…. whatever that may be. I just want to be the mom I was before all of this but is is so hard.
Woody came home and I slipped out for an hour to meet a friend for dinner. Just what the doctor ordered. We sat outside, ate good food, and the weight of the world seemed lifted off of my shoulders for the hour that I was there. I found myself laughing, enjoying our conversation, and it was just very easy, as it always is. The stars were shining so brightly tonight, I kept looking up to see if I could see a shooting star to make a wish on. I then decided I didn’t need a star, because one of the most beautiful stars was sitting right before me. I made a wish on my friend, the same wish I make 50 times a day. It made me smile. I came home feeling much better about things. It’s funny how certain people just bring out the old me, the funny me, the happy me. The me that is buried so deep down, but when she comes out I so enjoy being her. Tonight was something I very much-needed. An hour of pure bliss and happiness.
Ronan is still in a lot of pain. It’s absolutely killing me as there is nothing I can do. I mostly sit and try to comfort him, get him to take his pain medication, and try not to throw up at the thought of him hurting so badly. I sit back and wonder what it feels like for his little arm to hurt so much. Does it feel broken? Does it burn? Does it throb? However badly it is hurting, I know it is intense. He never complains about a thing and watching him with this is like daggers in my heart. I cannot wait to get him started on Monday for his next round of chemo. I never in my life would have thought I’d be so happy about getting back on his magic medicine but I cannot stand to see the pain he is in. He needs it badly.
New York is going to be good. And I am going to be good once I get there. It is my Ro baby’s city that is going to heal him; I just know it. We are going to get there, get into our routine, and get him better. I know he is going to respond well to his treatments; I have all the faith in the world. New York really is a magical place and I honestly feel that energy when we are there. We always do so well and we can do this. We will do this while refusing to let go of the rope we are holding on so tightly to. We are just going to keep tying knot after knot so we can keep hanging on. We are never letting go of our rope and I am never going to let Ronan slip and fall. I will hold on to him for the rest of my life and I will be thankful for every second of it. I never knew how precious life really was until all of this. It all seemed so trivial to me…. just another day in the life of Maya Thompson. Now I know how precious our time here on earth really is because I am watching my 3 year old fight for it every second of the day. It is so wrong, so sad, but so inspiring. Ronan has made me realize that my time here is meant to change the way certain things in the world work. He is laying out a path for me and I am not sure where it is going yet…. but I am going to keep following it until I figure it out. I love him so much. My sweet little seal.
Tomorrow, we have the clinic visit for blood and possibly platelets. We will say our final goodbye’s for now, but not forever. We will be back to see our angels at PCH soon. Ronan will be back and feeling much better:) Cannot wait for that day. Fernanda is going to come to the clinic with me to work on some things. I.LOVE.HER. so much. I swear she could rule the world. Beautiful people everywhere and I never even knew it. Thank you to all of you who are keeping up with Ro and his journey. We are so thankful for the love you send his way. Someday, when this is all over and Ronan is well, we will have a big party and all 264,578 whom are reading this are invited:) Wouldn’t that be amazing?? I am totally going to get Eddie Vedder to throw a Charity Concert for Ronan. Or Tom Petty. Or Neil Young. Or all of them combined. How awesome would that be?  Mark my words. Done and done.
Goodnight to my dear friends, old and new. ❤ Goodnight to each and every one of you. Love and blessings to you all!!!!
xoxo

Ro baby takes Philidelphia and New York City

I am so happy to tell you tonight that I haven’t updated things in a few days due to a very busy, but fun weekend. It’s the first time that I can remember since before Ronan was diagnosed with cancer, that things around here felt very normal. We spent the weekend hanging out at home, enjoying family time. Woody and I snuck out for a date on Saturday night while Auntie Karen and Olivia watched the boys.’ We had an amazing dinner at Tarbell’s even though I ended up crying a bit in the middle of a conversation between Woody and myself. I tried my hardest to just be a normal couple on a Saturday night…. but the harder I try, the harder things become. We will never be that normal couple again. It’s just not in the cards for us anymore. Everything has changed; nothing is the same.  Not even a Saturday night date will be like the old days. Maybe it is for the better…. because I am so much more aware of the reality of the world around me. But it still stings. I now sit in restaurants and watch the people around me and wonder if they have the sadness in their lives that I do, but in a different form. Or maybe they are lucky enough to be blissfully happy. I know that the world is full of sadness, but as I sat at dinner with Woody, the feeling of complete aloneness washed over me. I sat and thought things like, I bet their baby doesn’t have cancer, or I bet their Grandbabies are totally healthy….Then the guilt washes over me for having these thoughts…. I wouldn’t wish this on my worst enemy. I was once blissfully happy but also blinded by ignorance. Now, I truly know the meaning of ignorance is bliss. What a bullshit way to find that out.

On Sunday I met Fernanda at Hava Java for some coffee. I love that when I was on the phone with Tricia right before Fernanda picked me up and I told Trish how I was going for coffee, Trish goes, “What part of the world is Fernanda saving today?” So adorable. I told her she was saving me:) We sat and had our coffee and she helped me write down all of my questions for the doctors at Chop. We talked about my upcoming week, but the thing I enjoyed most was listening to my new friend talk about the things in her world. Her kids, her funny family stories, the things she’s done in her life. One of the biggest gifts of all of this has been getting to know this beautiful woman. Through this crises, comes the gift of her. I will be thankful for the rest of my life for all the beauty that has shown it’s colors during the darkest time. Fernanda is one of the most colorful things that I have ever seen in my life. I so need color now. This black and white stuff is getting a bit dull and scary. Life is not black and white, Ronan is not black and white, and I wish the doctors in this world would start thinking this way too. I’m about to take all the crayons out of Ronan’s Crayola box and scribble up and down all of their stupid papers and statistics. They do not know my Ro baby.

Woody and I also spent the weekend figuring out our plan for the week. Since Ronan’s ANC counts don’t seem to be dropping and he looks great, we decided to take him out to Philadelphia to Chop. Ro and I are flying out tomorrow morning on a Corporate Angels flight. Woody has a court appearance he cannot miss, so he will be flying out tomorrow late afternoon. We are meeting Dr. Mosse on Wednesday to go over our list of questions with her and to just get another opinion and feel for the place. We decided since we were going to be in Philly, that on Wednesday we would take the train to New York and meet with Dr. Kusher at Sloan Kettering on Thursday. We will fly home Thursday night. It’s going to be a whirlwind of a trip, but one that we both feel is necessary. We have to be prepared as much as possible for what we have ahead of us. Arming ourselves with as much knowledge as possible will only help us decide on what path to take for Ronan. I think we both know in our hearts; but we are keeping our minds as open as possible.

Today, Ronan and I headed to the clinic to have his levels checked. Dr. Eshun thought he looked great and saw no need to transfuse him. Ronan was so excited about not having to get blood, he practically skipped out of the clinic office and to our car. We went home and played out in our backyard and got everything ready for our trip. Liam and Quinn came home soon after and their cousins, Luke and Lily came over to play for a couple of hours. It’s always a treat to have them spend time with us. Ronan especially loves it. It was a good way to get him ready for his upcoming travels. He is a little sad about having to leave Liam and Quinn behind once again. He’s not the only one. I wish they could come on these trips with us but I understand how important stability is in their lives right now. I also understand how important it is to be able to just focus on Ronan, the doctors and get the job done. I cannot wait to get back home to them already though. So glad we will have the weekend together. Ronan is set to start his 8th cycle of Chemo March 14th. Hopefully we will stay hospital free until then. It would be so nice to continue to be at home. There is no place he would rather be.

Woody said to me tonight, “Aren’t these supposed to be the happiest times of our lives?” How do you even respond to that?? I just nodded my head and gave him the best smile I could, which wasn’t much. Fucking cancer. Thanks for robbing all of us of this precious time in life. I HATE YOU.

Hope you all have been well. Wishing you a night full of sweet dreams. Happy Birthday to my Little M today too. I hope you go my message and are having a wonderful time in NYC. I miss you so much and can’t wait to celebrate you when we both get back from our trip and things settle down as much as possible. I love you, Marisa ❤

Safe travels for us tomorrow! It’s going to be a very busy next few days!! G’nite friends!!

xoxo


A warning sign
I missed the good part then I realized
I started looking and the bubble burst
I started looking for excuses

Come on in
I’ve gotta tell you what a state I’m in
I’ve gotta tell you in my loudest tones
I started looking for a warning sign

When the truth is, I miss you
Yeah the truth is, that I miss you, so

A warning sign
You came back to haunt me and I realized
That you were an island and I passed you by
And you were an island to discover

Come on in
I’ve gotta tell you what a state I’m in
I’ve gotta tell you in my loudest tones
That I started looking for a warning sign

When the truth is, I miss you
Yeah the truth is, that I miss you so
And I’m tired I should not have let you go

Ooooooooooooooooo

So I crawl back into your open arms
Yes I crawl back into your open arms
And I crawl back into your open arms
Yes I crawl back into your open arms