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.

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25 thoughts on “Bravest boy in the world

  1. Megan

    I wish I had a fraction of his strength and your courage. You continue to inspire me, I continue to say FUCK YOU CANCER on Ro’s behalf.

    Praying for only good news to come.

  2. Willits family

    We love you all and are glad you are at Sloan but sad that we cannot hug you and help you. In our hearts and prayers. Much much love

    Gay

  3. Amanda Oliver Kop

    Ronan is the bravest boy in the world, for sure…and he came from the bravest parents. My boys and I pray for your family every night before bed…and now, since they are asleep, I will join the FUCK YOU CANCER chant!

  4. Mary

    Thinking of the 3 of you fighting this awful disease. Thank God you can be there together for Ronan and each other. Love, sister mary

  5. Kim Walters

    Maya and Woody,
    I am praying that you could just get a glimpse of who Jesus is and how much He loves you and your family. He is greatly aware of everything that you are feeling and going through and he wants you to give over your humungous burden that you are carrying. This is just another reason why he took all of this pain that you feel when He died on the cross for you and me. When asked how much do you love me? He stretched out His arms and died.

    Praying for a touch of Heaven over you,
    Kim and Jeff

  6. chrisie holder

    I am sorry this is happening. We’ve been there-I know exactly what it feels like to sit in Dr Modak’s office on a Friday-ugh. Tears running down my face as I don’t wish thos upon anyone. Honestly wish there was something that I could do but I can’t. Your doing it-doing what you need to do at the best hospital in the world. I used to joke that Ava gave Dr Modak his few gray hairs! I’m just so sad and sorry and want you to know I’ve been there. Please know that you’ll get through. There is a positive light at the end of this tunnel. Ronan will get better and get there. I know it and feel it in my heart. Your doing an amazing job and I would give you a hug if I could. Hang in there and I’m here for you always.
    Love chrisie

  7. Cindy Good

    I have been praying for you all day. You are in the very best, top notch place possible to finally cure your sweet, sweet brave little boy. Stay strong you are doing a wonderful job for all of your boys.

  8. Ed Lynch

    You guys are doing great !! Stay close to
    Each other and keep fighting as Ronan is a strong kid. I am so amazed by you guys! We are here for you! See ya next week

  9. Noelle

    Fucked up!!!! Pissed, Mad, Sad, don’t understand why!!!! Sorrow in my heavy heart!!!! Sending Love!!!! Praying!!!! Crying!!!!! Want it all to go away!!!!!
    FUCK YOU CANCER!!!!!!!!!!!!!!!FUCK YOU CANCER!!!!!!!!!!!!!!!!!!!!!!!!!!!FUCK YOU CANCER!!!!!!!!!!!!!!!!!!!!!FUCK YOU CANCER
    FUUUUUUUUCCCCCKKKKKKKKKK YYYYYYYOUUUUUUUUUU!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

    AND A BIG XXXXXXXXXOOOOOOOOOO TO YOU 3!!!!!!!!!

  10. Rosemary S.

    I am sooo sorry that your little guy is going through all this crap! He is so brave and is my hero! You can do this, you will WIN! There is an entire army praying for you all and we won’t stop! xoxoxoxo
    PS. double ditto what Noelle said!

  11. Candyce Lindsay

    The Lindsay family and our church continue to lift Ronan and your family up in prayer. the strength this little man has is indeed incredible, a little angel he is indeed! Woody and you are loving parents so keep doing what you do for Ronan and his big brothers. Candyce

  12. Carolyn Oberholtzer

    Fuck you, cancer. You fucking suck. Woody, Maya and Ronan, we are sending our strength, prayers and luck your way.

  13. Nancy Weber

    I so know what you are going through and my heart breaks for all of you. This is so wrong and we must stop childhood cancer…NOW!
    Tears run down my face as I read your blog. To watch your child suffer is the worst thing in the world.
    You and your husband are truly amazing parents.
    My heart, love and prayers are with you.
    Nancy

  14. bev

    Ronan, you look like a super hero to me, clothe in a cape ready to do combat with evil Cancer! You are indeed, one of the bravest boys I know…and I know a lot! Take care of your mama and papa for us. My prayers go out to you…you are invincible!

  15. Tiffany

    Thanks for the update Maya. What a star Ronan is. He is such an amazing kid- no wonder…he has such a wonderful Momma. So happy that Woody is there with you and Ronan- yesterday sounded extremely difficult and, if it’s possible to be a little relieved, knowing that you had each other at the end of the day was a bit of a relief. Praying for you all day, everyday. Tell Ronan that Jeansie can’t wait to met him. I told her about the nerf guns and could see the intrigue and excitement in her eyes! 😉

  16. Denise Kivela

    Im with Kim Walters(dont know her tho) but SERIOUSLY its time to turn to God!!None of us out here can handle seeing all that baby Ro is going through!Just pray to God as he will heal your baby,Not New York or a shooting star!Jesus is your shooting star and thats what its time for!Really,whats it gonna hurt?And all of us believers know its gonna help ALOT!!I pray for you ALL!!!

  17. nancy whalen

    Brave Boy….Brave parents….praying for your family that every cancer cell will disappear from Ronan’s beautiful little body.

  18. Glenda

    strength and prayers that your beautiful baby boy will be healed. that all of the cancer cells will be gone.

    you and your hubby are a team. so glad you both have each other during this difficult time in your life.

    continue to fight!

  19. Christine

    Thinking of you, Ronan, Woody, Liam, & Quinn. You are one hell of an amazing family! We are praying many times a day for Ronan, as well as your family. Take comfort in your beloved NYC, it will make you stronger. You will get through this, Ronan will thrive & go on to do amazing things with his life. Remember you are not alone Maya, so many of us feel such a strong bond with you. Just breathe, this too shall pass!!!!!!

  20. S

    Sweet Maya & Family, the next time you venture out in to the real world away from Sloan, observing all of these countless people just living their seemingly easy lives, and you feel totally alone in the world, please take comfort in knowing that you literally have an army of faceless strangers out there in the “real world” who are thinking about your baby throughout their day, and are heartbroken at the thought of him feeling any pain at all, and just know that we are praying for your little guy to be cancer free and back to running around with his brothers and driving you crazy! Maya, there ARE kids everyday surviving this cancer, and they too unfortunately had to take this awful road to get there, so stay focused on that huge light at the end of this ugly tunnel. I am so sorry you as a mother are having to go through this. I dont know how you and your husband are able after days like yesterday to pick yourselves up and push forward, my heart just breaks for you two, but look at your incredibly resilient Ronan, who just seems to push ahead and bounce back after every treatment, every surgery and every hurdle. He is amazing. This is why he will get through this. What a beautiful boy. And what a beautiful family. There is a great place to run and to take Ronan on the UES (not far from Sloan) starting around the 80’s (East End) and it’s a park and boardwalk overlooking the water and downtown skyline that is so serene and open and airy. Ronan can watch the boats sail by and play outside in the park.
    All the best to you and your family. May New York continue to be a source of healing and strength for you all.

  21. cynthia

    Prayers are with you, he will fight it as you fight it. life is not fare for some of us, so fight and smile at him as you can.

  22. J

    crossing all my fingers and toes…telling everyone to do the same. It is the strong willed that survive. All of you are stubborn, strong willed and will keep kicking this awful disease in the ASS. Get out the punching bags!!
    Thank you for keeping me updated. Hugs, prayers and lots of shooting stars.

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