You speak in every curling wave

 

 

 

Ronan. Today started off as good as it possibly could, without you here. We woke up and Liam, Quinn, and Layne spent the morning playing together. I put on my good mommy boots and made them all a huge breakfast. Waffles, fruit, eggs, bacon, sausage…… you name it, it was on the table. I thought of you the entire time as I was making the scrambled eggs, just as you would have liked them. You used to insist that I made the best scrambled eggs ever and would only eat them if I made them for you. I loved that so much. Soon, Layne went home to get ready for the day. Your daddy took Quinn and went off to Costco and to run some errands. I stayed here with Liam and we just kind of had a lazy day. I cleaned and did a lot of laundry. I had a few things trigger a lot of tears today and I did a lot of throwing up. Your dad came home to me, a wreck, just sitting on the bed, bawling. Quinn took one look at my face and sat down with me at told me he loved me and started rubbing my back. I forced the tears to stop and got up to help them unpack the things from Costco. Your daddy and Quinn came home with my very own surfboard for me. It almost cheered me up, but I mostly just couldn’t wait to get out into the water so I could get my ass kicked. I was on a mission. Mission accomplished.

I got your brothers all ready for the beach and we headed out to meet your cousins. They had their stuff in the sand, but they were all in the pool. We set our stuff next to theirs, Liam and Quinn headed out to the pool and I grabbed my board and paddled out into the ocean. The ocean seemed as angry today as I was. The waves were ridiculously big. I didn’t care. I paddled out as far as I could, which ended up being really far. Wave after wave threw me from my board and under the water. I continued out there, to try to get past them. I got up a few times, I asked for your help. At one point as I was paddling out, I looked up and a huge wave was getting ready to come crashing down on me. I think I said, “Oh shit,” out loud and ended up flying off my board and the fin ended up hitting the back of my arm really hard. I almost thought it was sliced open, that’s how badly it hurt. Turns out, it was not…. it turned into a big welt and bruise instead. No big deal, yo. As much as it’s hurting tonight, I am choosing to ignore it because all I can do is think about you and all the pain you felt, especially towards the end of your fight. This stupid welt on my arm has nothing on you, Ro. I surfed for a couple of hours and the current ended up pushing me really far away from my starting point. Tiffany was watching from the shore and when I finally got back over to her, she said she was a little concerned that I was going to end up in Mexico. I told her I didn’t realize how far away I had gone and that I was ALMOST a little scared for my life at one point. But not really because fear doesn’t really seem to exist anymore.

After my little surfing fiasco, I went to join your brothers and cousins at the pool. They are such little fish and didn’t stop swimming in the pool and the ocean until 9 tonight. We were down at the beach for 7 hours today. We met up with your Mimi and Papa, and Uncle Larry and Aunt Joan. Tiffany and her kids too, and we grilled up a big dinner by the pool while all the kids continued to swim. It was such a sweet summer night. Of course, the only thing missing was you. Quinn ended up cutting his little thumb on something in the hot tub so we had to doctor him up. I took him into the bathroom as he was very upset about his thumb. I changed him into his warm clothes, looked at his thumb that thanks to Tiffany and her first aid kit, we had it bandaged up pretty good. He was really upset about it and I just quietly explained to him that I was sorry he was hurt but he is going to get hurt in life; it’s just part of being a kid. I talked all about you and how after all the things that you went through, that were so painful, that you hardly ever cried. I don’t know if it is a good or a bad thing to make comparisons to you and how tough you were to Quinn. But tonight, it needed to be done and it felt right so I did it. I think more than anything, he was just tired and needed some mommy love. We packed up our stuff and Liam helped me carry everything to the condo while Quinn went on and on about his thumb. As soon as we got upstairs, I put him in my bed and 15 minutes later, he was out like a light. Worn out from his day at the beach and I know sad from missing you. Liam told me last night as he was crying that he was homesick. I asked what he exactly was homesick for. He told me his bed and you. I held him and told him we were all homesick for you, but now you lived in our hearts so you will always be with us. As much as I could tell you this seemed to bring him comfort, it didn’t. It didn’t help me either. I don’t want you in my heart; I want you back here with us, where your freaking belong.

After a long day, I ended it with talking to Stacy. What a perfect way to end my night then with a phone call from her. She had a lot to tell me about meeting with the busy little bees today in regards to the event that they put on at The Biltmore for you on Friday night. I sat, cried, and listened as she told me about meeting with the girls and how amazing they are and how much love they have in their hearts for you. I am still in awe of how quickly they put on this event and how many people came out to support it. We talked about how after the summer, I would like to sit down and pour all of my energy into making this an event something we do every year for you. For others, because as I’ve said before, we have to raise awareness. I cannot believe the army of people that we already have lined up to help us with this. I don’t even know how this happened. Actually, I do. It is all you, Ronan. You are changing lives everywhere. I cannot wait to personally meet all the people who helped with this event and give them all the biggest hug from you. The passion that you have created is astounding and once again, I am so proud to be your mama and your best friend. I miss you, Ronan. I know you are here though. Thanks for the little sign tonight that comes from my Pandora. Right now, as I’m writing this, your song came on. The song that we played for you every time you were left alone in the room for your radiation. The Killers, “Human.” You are such a special little soul. G’nite best friend. Thank you for visiting your daddy so much in his dreams lately. I know you will come to be when the time is right and I can get off of this damn Ambian. Love you to the moon and back, baby.

xoxo

 

Everything’s not lost, but really it is

Ronan. You were everywhere today. I had to stop and catch my breath a few times just so I wouldn’t throw up. I am reminded of you in everything and everywhere. In the whole avocado that Quinn had for lunch. In the Mickey Mouse beach bag that Stacy carried her kids’ beach stuff in. In the Star Wars swim trunks that Mac had on today. Even as I watched your cousin, Jake, eat some Mandarin Oranges at dinner. I had to fight back the tears over all of those things today. You loved all of them so much. It’s so strange to see these things that have such little meaning to everyone else, but they mean everything to me. I don’t know how to deal with all of those little things because every time I see things like this, I just want to curl up and die.

I am not living. I am surviving. And it sucks. I still don’t understand why you were taken away from us so quickly. I think about this all the time. It kills me that everything changed so suddenly and how rapidly your disease progressed. I swear it happened over night. Your daddy and I fought so hard for you. We talked to the best doctors, researched everything we possibly could and it still was not enough. It all happened way too quickly and I’m still trying to make sense of something, even though I know I will probably never get an answer. I deserve one though and I am angry at the way the doctors just seem to want to sweep you under the rug, like you never existed. I want to hear from them that they are sorry. I want to them to look me in the eyes and see their pain because  they couldn’t save you. I want some sort of acknowledgement that you were here and they are sorry that they couldn’t save you. I know this won’t make you come back, but I want them to hurt the way I am hurting so that maybe they will work harder to save the life of the next child who is going through something like this. I know that these doctors work hard, but not fucking hard enough because you are gone. I want someone to blame, even though I know nobody deserves to carry the burden of this. This is the cause and effect of our insanely mad world. It is the only way to explain how such a thing can happen to a child or a teenager. Complete unfairness and insanity. There is no other answer.

I ran on the beach tonight and was so not feeling it. I pushed through for you though. I sat and watched a daddy pulling his little girl on a boogie board and then I watched as the mom came and swooped her up and off they went holding hands, running down the beach. I wonder if that mommy knows how lucky she is. I would have given anything to have been that mommy today, running down the beach and holding your hand. Instead, I get to watch somebody else doing it. It was another one of those outer body experiences that I seem to have all the time now. After I watched the mommy and little girl, I laid down and the sand and looked up at the sky and just cried. I didn’t want to finish my run, but you forced me to get back up and pound out the last 2 miles. The waves chased me a lot today and at one point I couldn’t run fast enough away from them. My sneakers ended up getting soaking wet. I thought of you and pretended that the waves were your little feet trying to run after me. I have to hold on to things like this; this imaginary life I have made up in my head just to get through the days without you.

I heard from, “The Stranger,” again tonight. Except now, I know her name. I liked hearing from her and a bit of her story. It took a lot for her to write her first email to me but I am so glad she had the courage to do so. Her words helped me last night when I was really needing it. She talked about how she struggled for nights to write that email and then to actually send it. After my day yesterday, her email could not have come at a more perfect time. I know that was you, Ro. Your little way of getting to me. Thank you for that.

Quinn and Liam have their cousins, Jake and Carter over for a sleepover tonight. All is quiet except for your big brother, Quinn is in bed with me watching Sports Center. I knew he would end up in here with me and not out in the living room with all the other boys. It has been so nice having your brothers spend time with their cousins. They have formed such a bond over such a short period of time and all the laughter and just watching them all be boys has made my heart a little happy. It is helping me to see your brothers laugh and smile despite the sadness that I know weighs heavy in their hearts. I’m watching them heal a little more one day at a time and I know a big part of this is the family that surrounds us. I am so thankful for that.

I’m so sad tonight, Ro. Your daddy is not here and when I talked to him on the phone I could hear how sad he was being at home all alone. Without us and without you. I don’t know what to do or to say except for to tell him I love him. I’m having a hard time talking to him about you yet because everything is too painful. When we do sit and talk about you we both just end up crying. I don’t think the crying is ever going to stop. I don’t think there are two parents who ever loved a little boy so much. I like to think that it is because of the love that your daddy and I have for each other which is why you were given to us. We love each other so much and you were such a gift. I just don’t know why you had to be taken away. And I don’t know how we are just supposed to go on because it does not seem possible to live our life without you. I’m clinging on to anything I possibly can, but it will never be enough and I honestly don’t know how I am going to survive this. This life hurts and this life is cruel.

But I am going to continue to fight through this because I know it is what you want. It is what your brothers deserve and your daddy too. But there is not a day that goes by that I wish the world would just swallow me whole. Every inch of my body hurts and misses you. That will stay with me for the rest of my life. I’ve somehow got to find a way to learn to live this new life without you. I promise I will try as long as you keep guiding me and giving me strength.

That is all for tonight my love. I hurt too much to write anymore. I love you to the moon and back my most beautiful boy. Sweet dreams.

P.S. Every song on Pandora tonight has reminded me of you. Are you the one making this little playlist for me, my sweet boy? Your gifts are all around. Everyday with you was the best day of my life. I love you, Ro baby.

xoxo

No more plans…..just a new adventure

We started off the morning early as we got up and ready to take Ronan to St. Joe’s for his CT scan and RT. Dr. Maze met us at the Ryan House and then over at St. Joe’s just to make sure we were taken care of. He knew Ro did not need anesthesia, but came anyway to be supportive. After he got us settled, he left and we sat back in a room and waited for the CT scan to begin. Ronan did amazing, as always. He held perfectly still as they took pictures of his little body to decide where they would do the radiation today. After looking at the CT scan, Dr. McBride decided that Ronan’s pain is coming from his pelvic and hip area as the bones there have been eaten away at due to the Neuroblastoma. It is with radiation, that the neuroblastoma cells will be killed in hopes that the bone can heal back and Ronan’s pain will get better.

Thoughout this blog, I’ve always had a plan as far as what we would do with Ronan and his treatment. We chose what we thought was right, and I don’t have any regrets in the choices we’ve made; but it sucks when the plan you think you have in place goes arye. I’m done making plans for Ronan. We are going off for another adventure instead. This time, as long as Ronan remains stable, we will be leaving for San Diego on Sunday. Dr. Sholler has agreed to try something else for Ronan and we as parents, have decided to give it a shot. What do we have to lose? At this point, nothing. We are fully aware of the risks involved, but this is not the time to sit back and do nothing because we are afraid. I am more afraid of sitting back and watching Ronan get worse and worse as the days progress. Woody has been on the phone all day with different doctors all over the states and most seem to think this is worth a shot. We will be admitted to The Children’s Hospital of San Diego on Monday and we are praying that all goes well and Ronan can start treatment on Monday or Tuesday.

Here is a little info about Dr. Sholler and what therapy we will be trying for Ronan:

Dr. Sholler’s research focuses on new therapies for neuroblastoma and medulloblastoma. These neuronal tumors continue to be therapeutic challenges in pediatrics. Dr. Sholler has shown that Nifurtimox increases oxidative stress in neuroblastoma and induces cell death and decreases tumor size in xenograft models of neuroblastoma and medulloblastoma. Nifurtimox also decreases AKT phosphorylation increasing the cells sensitivity to chemotherapy. She is presently studying the mechanism of this drug, drugs effecting metabolic regulation and oxidative stress, and determining the best drugs to use in combination.

Dr. Sholler has completed a Phase I trial of nifurtimox. She has opened and is currently enrolling in a Phase II trial of nifurtimox in combination with cytoxan and topotecan for relapsed neuroblastoma and medulloblastoma patients. She will be opening this trial at other sites in collaboration with Dr. Roberts at Children’s San Diego, Dr. Ferguson at St. Louis University, Dr. Zage at MD Anderson Houston, and Dr. Eslin at MD Anderson Orlando. Within this consortium she hopes to bring new therapies through research to children with relapsed neuroblastoma and medulloblastoma.

Dr. Sholler’s lab is working in collaboration with Dr. Jeffrey Bond at the University of Vermont to understand the genomic differences within patients neuroblastoma cells. Understanding the specific biological profiles of patients neuroblastoma will lead to better understanding of the most effective treatment.

I am trying not to get my hopes up, but this just has to work. Our hearts were so broken when we left Chop as we were so sure MIBG therapy was the answer for Ronan. There are a couple of doctors who are advising against doing this, but there are also a few who are saying, “Why not.” Exactly. I’m not going down without a mother fucking fight for my son. I am not going to let him down as he deserves to be fought for like I’ve never fought before. Woody and I are both in total agreement on this; Woody is fighting just as hard, if not harder for our son. We will do anything we can at this point. There is nothing worse than sitting here, watching Ronan die. Because that is what he is doing. At least if we get him to San Diego, and try this clinical trial; the worse thing that can happen is ultimately, what is happening anyway. I don’t want him to die peacefully at The Ryan House while I sit here and just watch and wait. That’s not how this is going to go down. It’s not in our nature and it’s not in his.

As I have said before, we will not be cruel to Ronan and his needs. If for some reason, his pain gets worse within the next few days, we will of course re exam our decision. As of now, he is stable, his pain seems to be controlled, so we are going to take a huge leap of faith and do this. But it is not a plan at all. Plans always fly out the window. We are just following his lead on this journey of his and will do whatever we feel in our hearts that Ronan wants us to do. We want to take the twins with us, as we feel this is no time to be apart as a family. We need to be together for this part of Ronan’s journey. I’ve had enough of leaving them behind and so has Ronan. As long as we are together, Ronan will be happy and that is all that matters right now.

I got out of The Ryan House today and went to the twins’ baseball game. It was hard for me to be out in the real world, as always, but I did it for the sake of my twins. It’s hard for me to hear the conversations of others around me now as I hear bits and pieces of people complaining about the petty things in life. If they only knew how good they all have it. I kept thinking to myself about the baby boy whom I left back at The Ryan House, who is so sick with cancer and how we as parents, have been told that there is no chance for him to be cured. How am I supposed to go out into the real world anymore without it hurting so badly? All I wanted to do was run back to Ronan, to kiss him for the millionth time, tell him how lucky I was to be his mama, how sorry I was that he was hurting so badly, and promise him that we would get him better. I have been making this promise to him since day one. I did today for the sake of my twins’ but the sadness I felt while I was there was unbearable. Ronan should have been there with me, running around, getting dirty and watching his big brothers, play ball. I would give anything in the world to have those carefree days back with him.

I cannot sit here and wish for the past back though. The past is gone as we know it and we have to focus on the here and now and what we need during this time as a family. What we need is to be together and to continue to fight for Ronan. Each day that we don’t, we get closer and closer to losing him. He is just too special of a little boy to let go so easily. This next part of our journey is going to be hard, due to Ronan not feeling well anymore; but I know as a family, we can get though it. I’ve always loved the saying, ” Adventure is the spice of life.” It’s time to take on this new adventure and tackle it together with all the love in the world that surrounds us. I’m not giving up on hope, love, faith or Ronan. He is my baby and I know him best. I am going to listen to my heart and soul on this and we are going to turn this thing into the most positive adventure yet. If my son is going to die, it is not here and it is not now. I’m not accepting that this is the way he is supposed to go.

We have to be at the clinic early tomorrow for blood work and I’m assuming platelets for Ronan. I am also going to try my hardest to go to the twins’ school for the Mother’s Day Tea. Their little hearts will be broken if I do not show up. I have to be there for them and as hard as it is for me right now due to never wanting to leave Ronan’s side; I cannot let them down.

Ronan is sleeping peacefully so I am going to snuggle up to my little bug. Thank you all for sharing our story and loving us so much. I’ve tried my best to keep up on your comments as they mean so much to me. I am in awe of the love that surrounds us and will be forever grateful and inspired to be a better person because of all of you. So many of you love us without even knowing us. You’ve taken a leap of faith on our family and I feel you fighting right along with us. Thank you so very much. Sweet dreams my darling friends.

xoxo

Goodbye little eyelashes, until we meet again

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

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

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

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

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

xoxo

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

Dear Mama,

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

 

 

 

One foot in front of the other

Another day done. Ronan slept in for NYC time… 10:00 a.m. which was nice as we were all tired. He woke up a little grumpy, still complaining of pain. I tried my best to entertain him while Woody got some work done around here and he soon left to go back to RMH to get some quiet work done. For being stuck in a hospital, the days sure do fly by and I can’t even keep track of what we have done. We don’t really watch movies or T.V…..so I’m not sure where the time goes. We listen to music a lot and do a lot of playing. I do my best to make sure Ronan is as happy as can be; even though he asks for Liam and Quinn a dozen times a day. We did Ronan’s 4th day of chemo, and 5th day of radiation. So far, he’s done really well with the chemo. No more vomiting. We went down to RT (Radiation) tonight around our usual time, 5:00. I had Ronan waiting in his little wheelchair when one of the RT guys walked by and did a double take of Ronan. He came over and went on and on about how he is the most beautiful boy he has ever seen, how he has movie star looks and the most unbelievable eyes. I just nodded my head and told him I knew. He asked what Ronan’s name was and introduced himself as Kerry. He was really sweet and wouldn’t stop talking about Ronan’s piercing “Husky dog eyes”. It was very cute… you don’t usually hear a twenty something guy go on and on about how beautiful a boy is. Ronan can melt anyone’s heart and it was blatantly obvious from today.

Ronan knows the drill now. He knows he is to be perfectly still as he down still as gets his radiation. Our friends down in radiation had “The Killers,” playing on the stereo system for Ronan as they know he loves that band. I covered him up with GiGi,(his blanket) and he clutched his pistol gun in the other hand and I left the room. It only took a few minutes again and I watched my brave boy from the screen and talked to him over the speaker system. We were soon done and Ronan was very tired. He sat in my lap and our escort wheeled us back up to our room. I somehow talked him into a sponge bath, but only if I would put his Star Wars guys in the water too. He stood up and I got a tub, filled it with warm water and bathed him and brushed his teeth. I also scrubbed his Star Wars guys for him to make him happy. He is sleeping now and I am waiting for Woody to return so I can go on my run. It’s going to be a dark one tonight…. sorry Little M. I’ve got to go run tonight… my mind needs it.

Woody returned to Sloan around 8:00 NYC time. Ronan was asleep so I quickly snuck out. I went to the RMH, changed my clothes, and headed out. I was on the phone with my sweet Niki right before I was getting ready for my run. I got the usual, ” You be careful… I won’t even run in Central Park at night.” I gave her my nobody is going to mess with me answer and she laughed and said she it would probably actually be really good for me to fight off someone, so I could blow off some steam. I told her would just pretend like my slayers (as Marisa likes to call them) were cancer, and kick their asses. We had a good laugh about that one together. My new loop from the RMH and back ended up begin almost 9 miles. Perfection. The perfect run, perfect mileage, perfect night with no Slayers in sight, Marisa. It was refreshing, grueling, and just what I needed. I love running in this city and I love that I now have a set path and I know the distance. Gotta love GPS on the iPhone. I ran a fast 8 and a half-minute mile…. got back to the RMH, showered, packed a bag and grabbed some soup at Delizia’s, my one meal of the day. I have decided that I can seriously live off of my coconut water, coffee, Delizia’s minestrone soup, coke and chocolate. So ridiculous but whatever….. it works for me and I can actually keep that down without throwing up…. knock on wood.

I almost made it through the day without crying. Almost. I was sitting on the ground, rubbing Ronan who is now complaining of his legs hurting…. so I sit and massage him most of the day. Our senior in high school roommate started vomiting and we could of course hear her; which is awful. That threw me over the edge and I started bawling. Ronan watched me and asked why I was sad. I told him because the girl next door was sick to her stomach and it makes me sad. I quickly pulled it together and helped get new linens for her. Stupid cancer.

O.k. my dears… it is 12:30 at night here. My body is aching and my mind is officially done for the day. Sweetest dreams to you all.

Bravest boy in the world

We arrived to Sloan bright and early to start our plan for Ronan. Once again, you can never make a plan with all of this because as of now, our plan has changed. We headed back to Dr. Modak’s office and as soon as we walked in I looked at him and told him Ronan’s arm is worse and the pain is unbearable. I slowly pulled Ronan’s little arm out of his shirt to show Dr. Modak how swollen it looks now. He looked like he was going to be sick and was taken aback. This man is a doctor and to see the look on his face was upsetting to say the least. We talked with him and he decided we needed to hold off on the NK Cell trial and get Ronan’s pain under control. He sent us down for an X-ray as he was concerned Ronan may have a fracture due to how little he is using his arm. The X-ray came back and showed a lot of swelling, but no fracture. Dr. Modak told us what he felt like the best course of action was now which is to start radiating Ronan’s right shoulder today as well as admitting us to start him on his high dose chemotherapy. He said we could go home and do these things and Woody and I both said no way… we wanted to start ASAP. Dr. Modak made a few phone calls and now, we sit and wait to start Ronan’s radiation.

Woody looked at me in the waiting room with the tears welling up in his eyes. My turn to take over being strong for a while. I looked at him and I said, “What are you doing…. knock it off.” He just replied that he is upset because Ronan is in pain. I told him I was too, but that’s why we’re here now we’re not fucking around.  We’re not waiting until Monday, we’re not being put off, we are going to take care of this now so we can get back on track. We are in New York City for crying out loud and we are not wasting anymore time. I told you I feel strong in this city. Today I’m not sad. Today I am determined and strong. I know we are in the best place possible and Dr. Modak knows what is best. To say I love that man is an understatement; he is brilliant, smart, caring, and knows what is best for our son. Between him and Dr. Kushner; Ronan could not be in better hands. Knowing this gives me strength too.

After another grueling long day, we are finally settled in our room for the night. Today was a day full of dealing with a lot of Ronan’s emotions as he is beyond mad that we have to be at the hospital and not out romping the streets of NYC. We decided to check in until Sunday or Monday, so we could start Ronan’s high dose chemo tomorrow. Dr. Modak got us started on Ronan’s first session of radiation tonight. I cannot tell you how proud I am of my son. We went back to the room and Ronan was so upset and scared about the big table he was going to have to lay on. It took me 20 minutes with the 3 technicians ever so patiently waiting for me to get Ronan calmed down. He was so upset, and was crying and shaking. I sat and talked him through it, told him exactly what they were going to do, which was nothing scary at all… they were just going to take some pictures of him but everybody would have to leave the room, including me. He was not happy at all but after about 20 minutes, I got him to lay down into his little body mold that we had done earlier in the day. I looked at him in the eyes and told him how he could do this, without his sleepy medicine, and that I would be right back. He screamed for me as I left, but the techs strapped him down to protect him from falling and they came out of the room to start the radiation. I watched Ronan on 3 different cameras and I was able to talk to him the entire time on the speaker system. I watched as my baby held as still has he possibly could, his little lip quivering, being the bravest boy he could be. At one point I looked over at the Tech, tears streaming down my face, and told her this was beyond fucked up. Because it fucking was. It is probably one of the hardest things I’ve ever had to watch in my life. Not that the radiation was painful in any way…. because it is not. The whole scenario of watching Ro on a monitor, having radiation because the cancer is eating away at his little body was much too hard to handle. I did my best to continue to talk him though it and the whole thing took about 15 minutes; but if felt like a lifetime. Nobody could believe my little guy held so still, without anesthesia. Everybody was saying how amazing it was that a 3 and a half year old held so still, for so long. I could not have been more proud. After we returned to our room, Woody soon followed. He had missed the radiation part due to collecting our things at the Ronald McDonald House. He asked how it went and I quietly said fine, but soon ended up in his arms, crying like a baby. He held me tight for a few minutes and let me cry. Guess I’m not feeling as strong as I was earlier today. Sometimes my little badass attitude can even trick me into thinking I can handle this, no problem. I have decided I am only human and only can endure so much. Tonight in my husbands arms is just where I needed to be. We are so lucky to have each other.

Ronan will do 14 more days of radiation and start Ronan on a different high dose of chemo tomorrow as well which will be a 5 day treatment. Here we go again…. another little detour along the way to getting Ronan well. What else do you have for us world?? I’m trying my hardest, but this is getting beyond annoying. I just want my baby better already.

After talking to the Orthopedic doctors, they have found that Ronan has a Lytic Bone Lesion on his right shoulder. It basically means that the bone is becoming hollow. I am telling myself it sounds scarier than it is; which is true. It is something that can easily be fixed as Ronan is young and his bone will heal. It is going to take radiation to take care of the problem. Radiation is very effective in Neuroblastoma, so we have all the faith in the world. They want Ronan to be careful with his arm, so he does not end up with a fracture and say the radiation should make the pain disappear in a few days. Crossing all my fingers and toes. I cannot stand seeing him this way.

This is all the update I can do tonight as I am beyond tired, but wanted to take the time to let you all know what was going on. Please continue to send our little guy all your love and prayers. He needs them so badly. Sweet dreams, friends.

xoxo

I would like to say a big FUCK YOU CANCER for doing this to my beautiful baby boy. I hate you very, very, much.

You belong among the wildflowers

I was telling my bestie today that I remember when I was a child and my parents used to watch the show “30 Something.” As  a little girl, I always thought the people on the show were so old and the show was really strange. I then told her how I wished I would have paid attention because then maybe, I would have picked up on the warning signs that being in your 30’s is hard. Or maybe it’s really not, and it’s only because of our situation, but is seems as if everyone around my age is going through something right now. Please tell me it gets easier…. because right now this is so not how life should be. WTF?? I also told her that I feel like someone just came along, took a look at me and thought, “Oh, hello. You’re life is too perfect so we’re going to give your kid cancer.” Just out of nowhere, BAM! This comes along. Really? Thanks a freaking lot. Couldn’t I have been hit with something a little less drastic? This is so not necessary. Trish and I both decided that if we were told that the world were ending tomorrow, we would believe it. It is the only explanation for all of this bullshit. I am laughing out loud thinking about something that happened after she and I hiked tonight. We were walking back from Camelback Mountain and we were almost to my house when some car comes flying out of their driveway and almost hit us. Tricia seriously had to grab me and pull me back from being hit by the car. We both then started dying laughing saying how we should have just jumped in front of the car so it could have hit us. O.K…. maybe not such a funny story as I sit and re tell it, but we were dying laughing. Totally kidding of course but I swear the only way I am going to get through any of this is laughing at as much stuff as possible. No matter how morbid it may be. Oh, bestie. How I love you so. I will tell you everyday of my life that you are my saving grace. I am so lucky to have you. Together we will get through all of this. I promise you this.

So, this weekend, as horrific as it was due to some terrible bullshit that has gone down; was absolutely lovely. Pain and sadness cannot be denied, but through all of the tears I see a soul being cleansed and renewed. It is amazing what can come of things when you are surrounded by the people who love you the most and who refuse to let you fall without picking you back up. This weekend was spent doing things that we used to do as a family before all of this. Hanging out, going to baseball practice, playing outside, movie night, eating out for breakfast. Such normal family things. It felt so nice because it has been so long since we have been able to really spend time together like this. Ronan is acting as if he is the healthiest boy in the world. He is full of nothing but giggles and smiles, love and light. He is so happy to be at home with his toys and his brothers. He happiness is infectious and keeps us strong.

I spent a lot of time outdoors this weekend doing what I used to do before all of this. I went on a 2 hour hike with Trish and Sarah yesterday. It was so therapeutic. I love nature, love being outdoors and the time with the two of them is always healing for me.  Then this evening I hiked Camelback with my Tricia Boo. Hiking Camelback is something we used to do all the time together. It’s our church and our special place. We got to the top, sat down for a bit, and I prayed my little heart out. It was so peaceful and gorgeous. I miss doing things like this so much. I’ve already made Trish promise that we will get back to how things used to be, as much as possible. I’ve got to have a little normalcy in my life and time spent with her, running or hiking is so good for both of our souls.

Ronan and I go to PCH to the clinic tomorrow. They will do the standard checking his blood levels to see how he is doing. I’m not sure when, but sometime this week we are flying out to NYC so they can check my blood and do his scans. You ready to hear step one of what we will be doing at Sloan for Ronan?? Here goes……

Full Title :
PHASE I STUDY OF ANTI-GD2 3F8 ANTIBODY AND ALLOGENEIC NATURAL KILLER CELLS FOR HIGH-RISK NEUROBLASTOMA
Purpose :
The goal of this study is to see if it is safe and feasible to give chemotherapy (topotecan, cyclophosphamide, and vincristine), natural killer (NK) cells, and an antibody called 3F8 to patients with high-risk recurrent or persistent neuroblastoma. 

The NK cells, a type of white blood cell, must come from a patient’s relative who shares half of his or her HLA proteins, which are immune proteins important in transplantation. Studies have shown that NK cells from a donor can be given safely and can be helpful in treating some diseases. These NK cells are collected from the donor and purified.

NK cells can recognize and kill abnormal cells in the body and can work together with antibodies to kill target cells. The antibody 3F8 specifically recognizes a protein present on neuroblastoma cells. Researchers have already shown that the 3F8 antibody can be administered safely to neuroblastoma patients. They want to determine the effects of the combination of chemotherapy, NK cells, and 3F8 antibody on patients’ cancers and bone marrow function, and how to maximize its benefits in treating cancer.

Eligibility :
To be eligible for this study, patients must meet several criteria, including but not limited to the following: 

  • Patients must have a confirmed diagnosis of high-risk neuroblastoma that has persisted or progressed despite standard therapy.
  • Patients must have a matched blood relative who can donate NK cells.

This is where we are starting. We will start this on March 21st and will be in New York for 5 weeks straight. We will then be able to come home for a 3 week break. To explain all of the treatments combined right now is too overwhelming for me. But I wanted to let you all know where we are starting off. Dr. Kushner has seen great results in the lab as far as this study goes and it’s been successful in kids as well. We are putting all of our trust into him. This has to be effective. We don’t need anymore bumps in the road, please. This is going to be tough on Ro. I know the 3F-8 stuff is painful. But he is so strong. If anyone can do this, it’s Ronan.

I hope you all are well tonight and had a beautiful weekend. We are so thankful for all the love and support through all of this. We are very thankful every second of our lives. Sweetest dreams to you all.

xoxo