Tag: bone marrow

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.

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

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

I wish Neuroblastoma was an April Fools’ Joke

Last night, I left Sloan beyond beat due to our traumatic day. Woody came and met me and we swapped places so I could sleep at the RMH and spend a little time with Quinn. As soon as Quinn and I stepped outside, we were hit by all the rain. I wasn’t prepared at all… ballet flats on, no coat, no umbrella, etc….so the two of us held hands and we ran as fast as we could back “home.” We splashed in every puddle along the way, laughing the entire time. It was some much-needed simple fun. As soon as we arrived back to the RMH, we ran into my new friend who lives there, Doriet and her little girl, Ester. Doriet got a big kick out of how soaked we were and hurried us up to our room to get warm. I am just starting to get to know her and LOVE her. When I told her a few days ago that Ronan’s bone marrow was positive again she looked at me and goes, “So what. That doesn’t mean anything.” She is full of tough love which works for me. Seems that I respond well to her kick ass attitude and she is the pillar of strength. An amazing woman, mama, and wife to say the least.

Quinn and I warmed up and snuggled in bed together and slept peacefully all night as we listened to the rain outside. I didn’t wake up until my phone went off at 10 a.m. EST with a text from my Mr. Sparkly Eyes telling me he hoped today was a better day. I thought to myself… It HAS to be. I don’t think I could handle two yesterdays in a row. On our way to Sloan, we stopped at Delizia’s so Quinny could get a slice of pizza. He must have told me he loved me and thanked me a half a dozen times while we were there. Such a little love bug. I’m going to have a hard time when he leaves on Sunday. Once we arrived at the hospital, I found a sleepy Ronan and Daddy cuddled in bed together. I quietly woke Woody up to let him know he could leave, but he ended up staying for a few hours and working from the hospital. Quinn stayed in the playroom on 9 by himself and then met us on 2 so he could see Ronan at Radiation. It was the highlight of my day; watching my two boys laugh and play for the 20 minutes that we were waiting. Lots of laughs and giggles from them both. After RT, Woody and Quinn left and I stayed at Sloan. Ronan’s mood is so much better today. We have been playing a ton and he even let me hogtie him up while we played Cowboys and Indians. He is now quietly laying down and watching a movie. I think I wore him out! We are waiting for Woody and Quinn to get here and I asked the nurse if she could block off the playroom for us so Quinn could play with Ronan for a bit and we could have dinner as a family. She agreed to do so. Very nice of her as it’s the only way Quinn can be on the floor with Ronan for an hour or so. Better than nothing.

This weekend will be spent here, inpatient. Dr. Kushner came to see us today and said Ronan’s counts probably won’t come up until Monday or Tuesday. Yowzer. I am trying to make best of this and luckily, this hospital is really good about keeping the kids entertained. Lots of arts and crafts, funny clowns, the Candy Cart, etc….. I am just thankful that Ronan looks a million times better and he finally has his giggle back. It’s really hard to go a day without it. He is happy for the most part, although he asks me all the time when he can go back to Phoenix and says it’s not fair and he misses his home. This kills me. I just keep telling him that we will go home as soon as we get him better and that we have to be strong, keep fighting, and never give up.

Today, I was showing him his little lunch box with his name embroidered on it and I was spelling out the letters of his name for him. He looked at me and goes, ” I like it, but why doesn’t it say Rockstar Ronan on it?? I burst out laughing. Cutest thing ever. He spent the majority of the day playing April Fools jokes on me. He would tell me things like he had to go to the bathroom, and I would get him up to go and then we would yell out, “April Fools!” He must have done this a dozen times today. So glad my little prankster is up to his old tricks.

Ronan and I just got back to our room from our Friday Night Pizza Party. Woody and Quinn brought us pizza and we sat in the playroom and ate together as a family. Ronan was in a very playful mood and he is now tucked into bed watching the new “Clone Wars.” I’m going to cuddle up to him as he is getting sleepy. I am planning on slipping out soon and Woody will stay the night again. So thankful for that… I sleep horribly at the hospital and I really want to spend as much time as I can with Quinn before he leaves. I hope you all have a lovely weekend. Thanks for checking in!

xoxo

Sometimes it takes a really good fall to know where you stand

Where have I been the past 24 hours? Dead. Or the closest I’ve ever felt like dying. Yesterday, Dr. Kushner came to see us and we got the news that Ronan’s bone marrow is now longer clear of Neuroblastoma. All 4 sights from his scans a couple of weeks ago here are positive which explains all of the activity on his MIBG scan. The scans at PCH came back as clear… but that was 6 weeks ago. The most recent scans here show that his bone marrow is positive again which means that his cancer is spreading and we have to get it under control. So, I spent all of yesterday in a thick fog with my head spinning. I made it though the day while Woody worked but by the time he returned to the hospital, I was a complete mess. I spent much of the evening sneaking out of the room while Ronan slept…, throwing up. At one point, I found myself huddled up on the floor rocking back and fourth with my head spinning so quickly I felt like I was going to pass out. It was the first time in my life that I could not get myself back under control. I was sweating, crying, and could not even form a thought. My sense of smell was so heightened, that I couldn’t deal with any of the smells in the hospital. The smell of food and cleaning products combined were enough to make me want to check myself into the loony bin. When Woody returned for the night I told him I had to leave, that I needed some air. I somehow managed to get myself back to the RMH and passed out on the spot. I woke up around 11 p.m. with my raging headache that refused to go away. I got in the shower, dressed and walked down the street to the store to get some Coconut Water to try to rehydrate myself and take my Advil. I returned to the RMH still a wreck but forced myself to take my Ambien(which is the only way I sleep now) and fell asleep with my head still pounding and the thoughts consuming me that I cannot do this anymore, I cannot survive this, I cannot go on.

I woke up this morning, eyes bloodshot and red, still feeling defeated and as if I wanted to die. I cannot pick up my phone at this point to talk to anyone… but this morning when my friend, Ed called, I instantly knew I had to answer it. I was crying, I was still a mess and I didn’t hide it. I was on the floor of my bathroom as I listened to him tell me how he had pulled some strings and that the New York Knicks would like to host us at a basketball game. Did I forget to mention that my in-laws are flying out here on a whim with Liam and Quinn today? They are. We need them. Through my tears, I told Ed how excited the boys’ would be, how happy that was going to make them. My life now is all about squeezing every ounce of happiness for Liam, Quinn and Ronan, that we can from it. After I listened to Ed tell me how everything was going to be o.k., how I was a tough bad ass chick and I could do this it suddenly became very clear to me. I can do this and I will do this… this is not the end. Not even close. I can’t give up no matter how badly cancer is trying to win. I will keep fighting for my family, for my friends, and most importantly, for Ronan.

I picked myself up off the bathroom floor, showered, and headed to Starbucks before I returned to Sloan. On my walk there, I found myself getting stronger again. I texted my Mr. Sparkly eyes who is so amazingly helping me through all of this, even through all of his worry and pain for us. I told him about my breakdown, and how I took all of this morning to think about things as clearly as I can. How I have decided that I can do this because if I don’t, everybody loses and I am too strong to let that happen. How I won’t let cancer take my baby, my family, my friends or me. I refuse to give in but sometimes I have to breakdown in order to get my strength back. He texted me back something about my unbelievable insight, bravery and compassion. I thanked him for loving me and never giving up on me. I have so many people that believe in me and who know I can get Ronan through this. Last night, I got a taste of cancer winning and it was the most awful thing I have ever tasted in my life. I almost let it win. Today is a different story. Today, I walked the streets of New York throwing fists in the air and refusing to give up. I have too many people counting on me to let that happen. I am a mother and that makes me the toughest person in the world; next to Ronan.

We will be discharged from the hospital this evening and Ronan seems to be feeling better. We have taken him off the morphine drip and he is now wearing a little pain patch on his skin. I know the radiation is working just like this round of chemo is. I know we will get his bone marrow clear again. We will scan Ronan in 2 weeks to see how this chemo has worked. Depending on the results, we will either do another round of the same thing or go on to the NK-Cell trial like we had originally planned. I have come to learn that plans cannot be made when your child has cancer. All I can do is pray to God that Ronan remains pain free, he is happy, and we will take everything day by day. As much as I love a plan and how hard it is for me to let everything go, I have no choice. Every second of the day I have with Ronan is a gift and I have to make every second count. He has no idea his brothers are coming tonight and he is going to be so happy. We have decided that Liam will stay until Tuesday and then fly back to Phoenix with Mimi and Papa. We will keep Quinn here with us until April 3rd, and he will fly back to Phoenix with Woody. Ronan needs his brothers and if it means we have to pull them out of school for a bit, so be it. Our as a time as a family together, getting Ronan healthy is the most important thing in the world. Everything else can wait.

To all of my family and friends calling and texting. I’m sorry if I don’t respond. I listen to your every word but the one thing I cannot handle right now is talking, listening, and reading your words as you all cry and fall apart. It scares me to see you all so scared. I need you all to be strong for me right now and I can’t handle your tears. It hurts me to see you all hurting which is why I promise to be stronger for you. I need your words of encouragement… I cannot hear how your hearts are breaking and I know it is unfair of me to ask that all of you hide your pain, but that is what I need right now. There will come a time when I will be able to cry with you and you’d better believe that it will be because of tears of joy. I refuse to think any other way.

Thank you so much for all of your love that surrounds us and please continue to pray for us, for Ronan. We need all the positive love, light, and strength that we can get.

xoxo

The knot

The knot in the pit of my stomach is back and stronger than ever. So bad, that I am convinced I have an ulcer. I spent most of the day trying to get things done, while begin doubled up in pain. I also had to hang up the phone with my mom because I couldn’t even finish our phone conversation due to having to throw up. You see, it’s not enough that my child has cancer. At least before now, he was acting like it was not affecting him at all. It is now. I watch him as he favors the left side of his body more than his right, as he winces as I pick him up and tells me not to hurt him, as he keeps his little right arm stiff by his side because it hurts to use it. It’s not an effect from the chemo…. it is pain related to the Neuroblastoma eating away at his body. The MIBG scan showed a lot of activity in his right shoulder still. I’m convinced this is why he is now in a lot of pain. He won’t tell me though. I’ve asked him 50 times today and he refuses to tell me he is hurting. That is how stubborn and strong he is. This is why he will beat this fucking disease. No matter how hard it’s going to be; he is not going to give into the pain.

Try watching your 3-year-old suffer this way while feeling helpless as FUCK. Try to go on while acting as normal as possible, like every second of your day is not filled with excruciating pain. I cannot even go into the details of tonight but I will just tell you as I was sitting on the bathroom floor with my husband I just wanted to crumble up and die. He is hurting as badly as I am, even though he is trying so hard to be strong. I’m tired of being strong and I’m tired of watching him try to be strong. Nobody is strong enough for this shit. Don’t get me wrong, we can both put on a good show but at the root of all of this is pain beyond belief. I don’t even know how I made it through today. I was a zombie and ended up at my Tricia Boo’s house pretty much broken beyond repair. I sat with my friend and she watched and listened as I tried to put my feelings into words and she tried to fix the things that I told her were wrong. Nobody can fix this. The truth of it is, the damage is beyond repair at this point. Unless somebody were to magically heal Ronan overnight, I will live with this pain for the rest of my life. I don’t know how much more I can take. Somebody throw me a freaking bone already and give us some good news. I cannot stand to watch Ronan hurt while knowing I can’t fix it. I am sick to my stomach thinking about all the active cancer cells in his body just eating away at him and causing him pain. How can something so evil be going on in his sweet little body? I will never understand this. It is so cruel horrific. This isn’t a freaking ear infection or a broken arm. Oh, what I wouldn’t give for that.

We got home late last night. I feel like I’ve been run over by a truck. Ronan is happy, in spite of his pain. Nothing makes him happier than being at home. We have to go back to New York sooner than expected. We have to be back by March 17th. I need more time. Time with my twins, time at home, time to wrap things up before we go away for god knows how long. We have to get Ronan back to New York asap to start the high dose chemo as well as the NK Cell trial.

I’ve got to get in the right mind frame for New York. I know once I get there, I will take it by storm. But it is going to be hard to leave here. Mostly leaving my twins behind. My heart is literally ripped into shreds. I know they are in the best hands in the world, but that does not make this any easier. But we have no choice. We have to get Ronan better and New York is are only chance. I cannot believe New York Miss Macy is not there anymore. I am beyond sad about that. Tricia told me I had to find a clone of her that lives there. I’ll be accepting applications via email. Yeah right. Impossible. There is only ONE New York Miss Macy in this entire world. My little ray of sunshine is gone and I wonder how I will survive.

Time for bed my peeps. Tomorrow will be better. Tomorrow Ronan will wake up and not be in pain. Please. Please. Please. I can deal with him having cancer as long as I don’t have to watch him act like he does. I can’t take the physical signs…. it is more than I can stand.

Sweet dreams, my lovelies.

xoxo

Never-ending tears

How much can one little person endure? It’s amazing because the strength of Ronan seems endless. All he has gone through so far… all he is going to have to go through still. I am exhausted just thinking about it. He is back getting his bone marrow aspirates done and MIBG scan as well. I didn’t tell him until we arrived here what was going on. He cried and said he did not want his sleepy medicine unless Dr. Maze gave it to him. I knew he was going to be upset about that. He was more than upset. He  threw himself on the floor while the tears poured down his cheeks. I told him we could call Dr. Maze and he could talk to him if that would make him feel better. He finally calmed down after that and we made the phone call. Nevermind the fact that it was 6:30 in the morning back at home. I put Ronan on the phone and watched his little face as Aubrey talked to him. It lit up and he kept saying o.k. and nodding his head. He then told him, “I love you,” and handed the phone over to me. I have no idea what was said to Ronan, but it worked for the time being and calmed him down. We were soon called back to the procedure room and I was able to hold Ronan as the doctor put him to sleep. I left the room freaking crying. Time to get used to all new doctors, people, nurses, etc….. We are so attached to our angels at PCH. I already miss Sharon, Kristen, Dr. Maze, Erica, Dr. Adams, Dr. Eshun, Elaine, Patty, and “A,” so much. They have been our family for 7 months now and here we are starting all over. I didn’t think it was going to hit me so hard, but today it did. Especially leaving Ronan in the anesthesia room with some new doctor whom I’m sure I’ll never see again. Don’t get me wrong, Sloan is beyond amazing. But this is going to take some getting used to.

Lovely. Lovely that I am a blubbering mess today. Lovely that as soon as I was called back to see one of Ronan’s main doctors, Dr. Modak, to sign papers for blood work that I immediately starting bawling. Lovely him took my hand and said “Tell me what’s wrong.” I couldn’t even get the words out because everything is wrong. I just told him I was worried about this arm pain of Ronan’s. He pulled up the latest  MIBG scan for me immediately and we looked at it together. I’m sorry, but nobody at PCH would have done that for me. As much as I love them, the fact that Dr. Modak was able to pull up the scan in 2 minutes and discuss it with me was something that would have never happened so quickly at PCH. And it should be that way. It should be that way everywhere. I should not have to wait days for results. We went over the new scan and he showed me that nothing has progressed. If anything, it looks slightly better. I was able to stop crying for the rest of the time while I was in his office. At least I can have that peace of mind for the moment. I was sent down to the blood donor room to have my veins looked. I made it halfway there before I started bawling again. The nurses kept offering me orange juice to calm me down. Made me laugh to say the least.

My friend, Ed, is in the city today and should be here any minute. There is no way I am going to be able to hold it together for him. He lost his little boy Jack to Neuroblastoma a few years ago. He and his wife have been so supportive of all of this even though we hardly know them. They are 110% behind our Sloan decision which makes me feel very good and just confirms that we did indeed make the right decision. I only was able to see Ed for a few minutes due to Ronan waking up from anesthesia as soon as he arrived. He woke up grumpy like always and wanted to just go back to the hotel. I grabbed the Starbucks Ed brought me and he helped me with the stroller downstairs until I was able to calm Ronan down enough to put him in it. What a sweetheart. We were planning on going to lunch but Ro baby was not having it. Ed grabbed a cab and we headed back to our room. I tried to get Ronan to rest a little bit but he was hell bent on going to FAO Schwartz. I bundled him up, threw him in the jogging stroller and ran up to FAO. We stayed for about an hour. He was tired and is in a lot of pain from his bone marrow aspirates that he had done today. He keeps asking why they put needles in his body. UGH. He is hurting tonight which kills me. I hate seeing him in pain and I know it’s bad because he never complains. After FAO, we ran back to our “hood” and went and grabbed our favorite pizza. He ate a lot as always and now we are back in our room. It is freezing out there and I am so exhausted today I swear I could fall asleep right now. It will be an early night for sure.

Woody is flying out tonight to NYC because Dr. Modak needs his blood by tomorrow. Nobody in Phoenix can send his blood that quickly so he is just flying in. Ronan has a CT scan at 11:30 tomorrow and we will fly home with Woody tomorrow evening. I hate to admit this; because I like to act like I’m such a tough ass and have everything under control; but……. these 3 days without Woody have been SO hard. I sometimes take for granted how helpful he is to me but I swear, never again. I could NEVER survive this without him. I miss him terribly and I am so insanely blessed to have him as a husband. He truly is the best thing to ever happen to me.

That’s all for tonight. An early update because I hear a hot shower and a very early bedtime calling my name. So thankful that todays MIBG scan showed no progressive disease. Maybe I will sleep a bit better tonight. I am anxious to get home, I feel like I’ve been gone a year.

xoxo, sweet friends.

P.S. Biggest HAPPY BIRTHDAY loves to my New York Miss Macy. This city is not even close to being the same without you:( Miss you so much. Kisses from NYC!

Not following the yellow brick road

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

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

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

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

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

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

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

On to the next step…. Transplant here we come!

Wasn’t a lifetime ago that I was sitting in the cafeteria with Auntie Karen, E.J. Tricia, Max and Woody as we went over all the options for Ronan? Wasn’t it a lifetime ago that I had to leave the table because I was hyperventilating and Tricia followed me and I told her there was no way I could do this?? How could it be possible that so much could change in the blink of an eye, and here we sit 5 months later with everything on paper, telling us the results from Ronan’s scans.

Bone Scan- No definite focal abnormality

Bone Marrow– No definite focal abnormality

PET-CT– MIBG– Still has a small amount of activity in his knees, pelvic bones, shoulders, and spine but it has greatly diminished.

MRI– No abnormality in the brain.

24 hour urine test- negative for Neuroblastoma

This is good news. This is a huge victory for Ronan. But I still cried. I cried because I am his mother and I just wanted everything to be gone already. The doctors did not expect Ronan’s results to be any better than this, due to how tough this cancer is. That is why we will do the Stem Cell Transplant, Radiation, and Antibodies. Yesterday was a hard day though. I called Fernanda first… because it was her words I needed to hear. She let me cry and then told me all of the reasons why this is happening, how fucked up it is, but how this is Ronan’s journey, and I cannot compare it to anybody else’s because he is so different. She told me how lucky we are that he is responding so well, as unfortunately, some children do not respond at all. He is on his own path and is going to do this his own way. She is so right. I felt better after talking to her and made a couple other phone calls. I was running late to my hair appointment and was a mess by the time I got there. My sweet hair girl, Katrina (the one who shaved Ro’s hair for me) knew something was wrong as soon as she saw me even though I told her I was fine. 10 minutes later I was bawling in her chair as she wrapped her arms around me and held me. I told her about the scan results and what we had coming up. She is the best and is so good at letting me vent. Thanks, K<3 Love you.

Don’t even get me started on the fucking Audiology test yesterday. We had to finish it up and when we were done, the asshole Doctor looked at me and started saying things like, “Definite hearing loss, it’s permanent and will never come back. You may want to consider what kind of quality of life you want for him.” I wanted to reach across the table and strangle the mother fucker. The way he delivered his “news” was harsh, cruel, and just plain rude. I felt like I was sitting back in Dr. Robinson’s office for the first time having Ronan’s eye looked at when I ended up walking out of the appointment. I tried to argue with him, but his results are his results, he said.  WTF ever. I will not be going back to see him again. We know Ronan is going to have high pitched hearing loss, and big deal, we can deal with that. This guy made it sound like Ronan’s life was now going to be completely ruined. This is not the way you present your findings to a mother who’s child has cancer. We’ve got enough on our plate as it is and this is the last thing I’m concerned about right now. I’m made my complaint and will continue to do so against this asshole. If you are going to be so cold and ruthless, you should not be working with children.

Ronan has been in a happy mood since we got home yesterday. This will be his last weekend here for awhile so we are going to soak it up. He has no idea yet what is coming up next. How do you explain to a 3 year old that they will be going into isolation for god knows how long?? You don’t. I will tell him on Wednesday night, as little as possible and try to explain it in the most kid friendly way I can. I have a lot to get done before Thursday and thankfully my therapist squeezed me in on Tuesday. I’ve got to get myself ready as well as Ronan. We will meet with Dr. Adams on Tuesday to go over everything. I am excited. Excited that we are moving forward and that Ronan is doing so well. I am excited to get this Stem Cell Transplant done and give my baby a whole new immune system free of this evil cancer. He is going to have another birthday to celebrate once he gets his immune system. He will be the boy  with the most birthdays ever;)

This weekend we have the twins’ basketball game, my mom and I are having lunch with my dear friend, Lisa, Woody and I are going to Tricia and Max’s tonight, and tomorrow night all of my sweet girlfriends are kidnapping me for a dinner out send off. So excited to see them all!!!! It is going to be a great weekend and I am going to enjoy every second of it.

I hope you all have a wonderful weekend!! Thanks for checking in and spreading the word about our little Rockstar!

xoxo

GRRRR… New York Miss Macy! Mama Bear is in full effect. LMAO!!!!!! I totally think this will keep me warm in the hospital!! Love you my crazy friend!!

Bone scans results…. kind of.

We started off this morning with Ronan’s Audiology test. It went alright… but we were not able to complete the test due to Ronan’s lack of cooperation. He was able to get through some of it in which the Doctor played high frequency sounds and Ronan would put a dinosaur into a bucket when he heard the sound. He did pretty well, but the Doctor is suspecting Ronan has a bit of high-pitched hearing loss. He is not confirming anything as of now. We are supposed to go back Friday to see if we can finish up the test. I refuse to believe Ronan has hearing loss… I don’t know why because it is very common side effect after going through so much chemo. Actually, I do know why. It’s because Ronan is different and is going to overcome any obstacle that comes his way. So what if he didn’t put the dinosaur in the bucket the second the high-pitched sound came on. He’s tired, mad, and sick of people testing, poking, and prodding at him. I wouldn’t corporate either.

After the Audiology test, we headed over to check in for Ronan’s scans. While waiting, I noticed a little girl who looked familiar to me in the waiting room. I have heard about her since Ronan was diagnosed, but have never met her. I’ve been on her website though so I knew the little girl was Ava. I went up to her mom, Chrisie, and asked if she was Ava’s mom and she said she was. I introduced myself and she knew who I was because I had emailed her awhile back. I thanked her for helping me out with my questions and we were able to update each other on both of our kids. I met Ava’s Grandmother and her Dad as well. They look like the nicest family in the world. What Ava is going through is beyond heartbreaking but she seems like a very strong little girl. All of Ava’s treatments are done at Sloan Kettering, even though they live here. Ava was here for scans today so please keep her in your prayers as well. Here is her website if you would like to visit it: www.caringbridge.org/visit/avaholder. Ava’s Neuroblastoma has relapsed twice, but she is still here and still fighting hard. I will scream and very loud, “FUCK YOU CANCER!!!!!!” for Ava. Makes me so angry. I just wanted to wrap my arms around her entire family while they were waiting for Ava to come out of Anesthesia. I am so happy I had the pleasure of meeting them today. What are the odds really? They are never at PCH and just happened to be on the same day I was there with Ro. It was meant to be. I feel so blessed to have finally met them and sweet little Ava. She is a little spitfire just like Ro 🙂

As we waited for Dr. Maze to come and get us for Ronan’s Anesthesia, he fell asleep in my arms. I sat and watched him sleep so peacefully. I took that time to think about what a long way he has come since first being diagnosed. I found myself in a comfortable state of mind full of peace and quiet. I sat with him in the dark and prayed for his scans to come back with the results we are hoping to see. I felt a wave of warmth in my heart wash over me because I felt, once again, that Ronan is going to be o.k. He is going to beat this and go on to live a normal, happy, long life.

Dr. Maze arrived and we were taken back to the room where they were getting ready to do the bone marrow procedure. He let me hold Ronan as he always does while he gave him the Propofol to go to sleep. I held him and watched him get sleepy and listened to him cry out, “Mama, mama, mama,” for me. He doesn’t like the way the sleepy medicine makes him feel. I told him I loved him and would see him soon and set him down on the bed. I gathered up my things, took one look back at my baby, and Dr. Maze yelled at me to go and eat something. I had to laugh to myself because at the beginning of all of this, Dr. Maze was so proper and reassuring. Now he knows me so well and knows that  I am so used to all of this that he is comfortable barking orders at me to eat something. Gave me just the chuckle I needed to get out of there without even tearing up like I normally do.  Woody met me at the cafeteria and I managed to eat a little salad, but pretty much just sucked down a giant Coke instead. An appetite is something that I am still having a hard time with, especially on scan days.

After Woody left, I sat in the waiting room and waited for Dr. Maze to come and get me. I tore through the piles of bills that I needed to get paid and the next thing I knew, it was time to get Ro. He woke up groggy and grumpy like he always does. Dr. Maze went back and looked at the scans for me and came back telling me as much as he could. Our Doctor, Dr. Eshun, is in New York City and will not be back to read the results for us until next week. Dr. Wood, who has followed Ronan since the beginning is here and I sent Dr. Maze a text asking him to please have Dr. Wood call us to go over the scans because next week is way too long to wait. I got a phone call from “A” tonight instead. It was hard for me to talk to her, as I had Ronan screaming in the background and had to run outside to even hear her talk. She said she could go over the results from the bone marrow and bone scan for me in a very limited way. As she put it, in her medical terms…. she told me that there was “No focal discreet abnormalities in the bones anymore.” Um… what?? She may as well have been speaking another language. I couldn’t think of what questions to ask, as I was distracted by Ronan and my nerves were a wreck. I said to her, “I have no idea what that means, but is that a good thing?” She said indeed it was a very good thing and that is just what they would want to see. She told me Dr. Wood would call us tomorrow or Friday to go over what exactly this means and to discuss things further in detail after they do the MRI, CT, Pet Scan tomorrow. Those scans will tell us in more detail what is going on now. All I know is “A” was not alarmed about anything and that alone will help me to sleep a little bit better tonight. I will let you all know the “formal” results when we get them, but as of now, there is nothing to be alarmed about. The treatment we are doing is working and that in itself is a huge victory in its own right.

We are all exhausted tonight and Ronan has another big day of scans tomorrow so I am going to try to get some sleep. Please continue to send your strength and love his way. His diagnoses has been beyond devastating to us, but the way he continues to beat all of the odds is beyond inspiring. He fills me with such hope and love every second of the day and it is the love that I have for him that will get all of us through this.

G’nite and sweetest dreams to all of you.

xoxo