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.

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38 thoughts on “Twinkle Twinkle little star

  1. Jessica-June

    I will pray for Ronan every day, I know he can beat this, he will be healthy again some day! I know it in my heart!

  2. Trish

    Wow, you found the words! I’m proud of you. I’m sure it was not easy. I’m sure you want to curl up and not come out, but you did and you will because you are the mama bear and you are a fighter, that is evident. I am so happy to finally have met you in person today. I wish it had been under better circumstances but still I am proud to say I met and know you! I wish I could take away just an ounce of your pain or lighten the load of stress you are carrying, I’m sure everyone would want to do their share for you…if it was just that easy. I wish you and your family all the best at CHOP. Ronan is a doll. He will remain in my thoughts in prayers during this next phase of treatment. My offer to help is always in place and sincere, so please never hesitate to call on me.

    best wishes, Trish Moran

  3. Laura

    We all are continuing praying for your entire family. Hopefully CHOP will provide the miracle that you all deserve. Try to enjoy Easter with your beautiful family. Treasure the moments you have together. All our love, the Mackeys

  4. Marquita Ward

    I’m not giving up. I do understand the “nightmare” feeling..our family went through a situation about a month ago. I won’t go into it but that is how I felt.
    I am not giving up. I will keep praying. I am not giving up.

  5. Laura

    Hoping & praying for your little man, I live right outside Philadelphia and my 3yr old son goes to CHOP also.(he does not have cancer, but a rare blood disorder ) Let me know if I can be a help in anyway!
    Lckarle@yahoo.com
    hugss
    laura

  6. Margo Fishel

    My prayers are with you, Ronan and the rest of your family. Ronan is strong as you are all. Ronan is going to blow CHOP away. He will respond to the treatment.

  7. RA

    I can not fathom what you and your family are going though. However, I have had a feeling from the very beginning that Ronan will beat this, and I am still resolved that he will. This New York round was just one battle, not the war, and he will win the war! Covering you all in prayer from Texas…

  8. Kristina

    Dear Maya,
    I have been silently reading your blog from day one. Liam and Quoin were in Mrs. Burns’ class with my daughter, Laurice. I didn’t have the guts to post before, I felt that no matter what I said, it would not make things better… I have been praying and crying and smiling with you, sitting in the comfort of my home with my little ones tucked in their beds.

    After reading your last post, I could not stay silent anymore. Your honesty, hope and amazing attitude moved me beyond words. Ronan and you are a true inspiration.

    After reading this post, I immediately looked up MIBG therapy and you are right to be hopeful – the statistics support that! http://www.childrenshospital.org/newsroom/Site1339/mainpageS1339P1sublevel500.html
    It looks like this procedure is used exactly for relapsed neuroblastoma and I am a 100% confident that it will work.

    I am sure you had tons of advice and people telling or suggesting you what to do – and I’m sure they’ve only meant best from their hearts. I wonder though, have you ever talked to any natural medicine doctors? It would be unrealistic to think that diet and homeopathic medicine would cure the disease, but I have no doubt they would help Ronan feel better…

    No matter what you do – you have a strong intuition, so let it guide you.

    I am so proud of you, I feel like I know you personally and I truly love you all.

    Please take care of yourself and don’t give up. There is always hope until there is no hope.

    Kristina

  9. Mary

    I’m not giving up either. I wish I could do something………but all I can do is pray and give your beautiful family a hug. (((((((((((((((((Woody, Maya, Liam, Quinn, Ronan))))))))))))))). Stay strong sweet girl and please EAT!!

  10. Stephanie

    I’m not a religious person. I’m barely a spiritual person, but I am praying my socks off for your little man, you and your family.

  11. Tonya

    I think of your family often and keep you in my prayers. You are an incredibly strong Momma Bear and you will get Ronan through this. He is such a fighter and a strong, brave little boy.

    Reading your blog, I see the love between you and Ro and the bond that you share with him and it is unbreakable. Nothing can break it. Nothing will break it. Cancer will not win. You are an amazing person and you are stronger than you give yourself credit for. You have the strength and the courage to get through this. I read it in every update you post.

    My prayers for you are this: I pray for you and your family to find peace in these difficult times, for strength when you feel you are at your weakest, and for courage when you feel that you have none. I pray for Ronan to get well and kick cancer’s butt. He will kick cancer’s butt!!!

    Sending lots of Love, Hugs, Prayers & Positive Thoughts…

    Tonya

  12. simone atkinson

    I wish so much there was something I could do for you. I don’t ever pray but I will for Ronan. If there is ANYTHING on earth I can do for you please tell Woody to call me.I totally 100% believe Ronan will beat this.

  13. Amanda Oliver Kop

    Attn cancer: Fuck you! You think you’ve got this kid? You think you’ve scared off his troops? Well, here are the facts and you better be the one to run scared. You have NOTHING! Got it? NOTHING! This kid has an army behind him ready to take you on till our knuckles are bloody and our muscles are aching. This army is praying with the kind of strength that has moved mountains and parted waters. Fuck you, cancer! You have NOTHING! He has everything and you will never take that from him and his family. Get the hell out of here!

  14. Rosemary S.

    This next treatment will work. Simply put…it WILL work.

    Ro has a story to tell…about him winning this ugly battle against this crap! He will travel the world as an adult…for many years…talking and encouraging others to fight on, like he did….that people CAN and WILL win! Like he did! You just watch!

    I also believe that Easter is a time of Miracles, of Healing, of all things good happening from this day forward.

    Stay strong. Prayers flowing forth. Hugs.

  15. Kate, NB mom

    Maya-we were “sloaners” as well. That is until, my son turned out to have this crazy mutated gene in which they told us it wasn’t the place for us and sent us to CHOP. we were disappointing and a bit shocked. we have been at CHOP for over a year now. You will be very happy there. sending you all the love, hope and faith I can, Should you have any questions, feel free to email me!

    Kate D.
    NB momma

  16. Amy

    I would be lying if I said this post didn’t completely bring me to tears…But I am praying, praying, praying. You have the strongest little boy in the world, and I know he can beat this! While I don’t know you personally, I feel as if I know all of you through your blog. Stay strong for Ronan and please know that there are a million people praying for you guys! I would still love to send a picture and letter to Ronan, so I hope you’ll give us an address when you make it to CHOP. Are there any toys or Star Wars guys that Ronan doesn’t have that he would love? I will spend this Easter praying for your family, and I hope you enjoy this weekend with your boys.

  17. bev

    OK Mama Bear–you’re on a roll! You’ve got the troops out here rallied…collectively we are keeping Ro in our prayers…tough guns have been pulled out! This is Easter…a day of HOPE for all of us…no placed for cancer to hide! So, feel the energy….all positive…being directed to your family…we all love you out here. Light sabres be ARMED!
    It’s SHOWTIME!

  18. Michelle

    Maya, I had to read your blog over and over, because I was so hoping it was a dream, in my heart I never thought I would read what you wrote, as others I have a strong intution and know Ronan will beat this disease! We all in Vancouver have been praying for Ronan and praying for your family. Rally your troops , get the guns and armor and march ahead and blow the Cancer out of CHOP!!!

  19. Michelle M

    My sister and I are currently participating in Sumits Yoga Teacher Training. At the beginning of the training course–a few weeks ago–we were told that one of our assignments will be to write an essay on someone who inspires us. Both my sister and I looked at each other and said, “Maya and Ronan”. As a volunteer at PCH, I have had the honor of meeting both of you. My sister and I have bonded more deeply over your blog. I believe in the power of prayer and I read the comments people leave and see how Ronan is affecting folks–even getting people who don’t pray to pray for your family. Wow! If that is not a rockstar in action, I don’t know what is! Thank you Maya for being the woman I know many of us strive to be.

  20. Julie

    I am following your story every day and am truly inspired by all the love and energy you and Ronan give the world. You and your family bring out the best in people and one day when this terrible time is over and you have your family back in one place – ALL 3 beautiful boys – with you and Woody, you will share your wisdom. Until then, thank you for sharing your journey and thoughts on this site. You have no idea how many people are praying for you and how you make others stop and take a moment to be thankful for all that is good in the world with our children.

  21. christi rich

    Maya,

    I read your posts every day, I pray everyday for this precious child of yours and your lovely family. I am just devastated by your latest post as I too had to read it over and over to make sure it was real and not that nighmare you dreaded so much. It brings me to tears especially on this day, Easter. The MIBG therapy is where you should be and where you will finally be able to get your child back whole and cancer free. You are so strong, so steadfast in your fight for your child that no one can deny you the outcome that is within reach. Do not hate or be mad Dr K for long, hate and anger will defeat you. I know that you will face this new challenge with the fierceness of a lioness and you and Ro will overcome it. Give Kay and Charlie my love and prayers too, and I have known them for years…and this is just as devastating to them.

  22. Cheryl

    Maya, in the darkest of days when you believe there is no hope you can’t give up. You are an amazing strong woman and I know fighting for Ronan is going to pay off soon. It takes the right combination at the right time and all our prayers will be answered. I will continue my prayers for you and your beautiful family. I wish you and your family a Happy Easter and may god bless your family.

  23. Glenda

    My heart breaks for you and your beautiful Ro. Don’t give up HOPE! I hope and pray to God that CHOP is the place of all miracles. It has to be!

    Thank you for your honesty and you and RO are truly an inspiration. Stay strong! and continue to FIGHT ON!!!

    Praying positive thoughts and will continue to follow your journey.

    Happy Easter to you and your beautiful family. Enjoy today…enjoy every minute of every day! xo

  24. Farrah

    You all are in my thoughts & prayers today. I will begin praying now for God to guide the doctors, nurses, and staff at CHOP. Sending lots of love & prayers to you all.

  25. Michelle Hobbs

    It sounds like most of us were in disbelief reading your post and had to reread it to really believe what you’d written. That in itself speaks volumnes on how strong of a conviction people share in Ronan’s ability to heal. So many times a change in plans has steered your journey in the right direction, and I believe that this too is one of those times. Praying for healing, peace, trust and assurance for Ronan and your entire family on this Easter Sunday. xoxo

  26. Terri

    Maya and Woody,
    My words would exactly echo Kristina’s. I, too have been quietly reading your blogs and praying each and every day for your darling, sweet Ronan with the beautiful eyes. You and Woody are an inspiration to all.
    I have known Kay and Charlie for many years. My son, Jeff, and Woody were good friends growing up. So many memories with the Thompson’s. What a very special family and a strong family. Please know that prayers and love follow you all. Maya, you are an amazing young woman. Keep up your strength and please give our love to Woody. We will be thinking of your Rockstar and know that he, like his wonderful family, is a fighter and will beat this rotten unfair disease.
    Love to you all,
    Terri

  27. Sonja

    We continue to pray, we continue to have faith, and we continue to believe!!!!! God performs miracles EVERYDAY!!! This is NOT too big for him to handle! We will continue to hold your entire family up in prayer daily.

  28. Justin's Mommy

    My heart is broken after reading your post. I am so angry that this happened to Ronan. You deserved better treatment from someone you put so much hope into! I don’t know you, but I have been following your blog since the beginning and I can’t imagine how you are feeling. Rest today and find your strength for tomorrow, Ronan is strong and you are stronger Maya! Ronan can do this, he can beat the odds. Keep up the fight!!! Praying for you and your beautiful family.

  29. hiddenblessing

    Maya, just wanted to send a story your way that might provide you with more hope and faith – if you don’t know of his story already, please check out Braden’s story at http://www.caringbridge.com/visit/bradenh. Braden has been fighting relapsing neuroblastoma and is currently in remission. His facebook page is actually how I came across Ronan’s story, so you may already know of him, but if not, his story might add strength to your fight! 🙂 Know that we are all praying for your sweet Ronan!

  30. FL mommy

    Dear Maya and family- I learned of your blog through a mutual friend and just wanted to you know that we are sending prayers your way from Florida. Your sweet boy WILL beat this!!! Though we have never met, my heart breaks for the path your family is on, but I have the utmost faith that you will make it through. You are surronded by such beautiful and amazing friends– what a wonderful guiding force! Know that your strength as a mother is incredible and something all of us moms aspire to be. I will keep your beautiful baby in my prayers every day. God bless.

  31. Nicole E

    Maya and family:

    I too read your blog each night, and pray for your family often. I am so angry that you are going through this. It’s not right, it’s not fair. The biggest concern a 3 year old should have should be in regards to toys or which child to play with at the park. I am angry your baby faces all he does. I hope you take some comfort and solace in the fact that you have so many people out there who are behind you and believe in you guys. I am sure in times like these it’s hard to feel comfort. I bet it hurts just to breathe. But it sounds like you have people all over the world who are praying for you. I am one of them and will continue to be. Hope you had a Happy Easter. Go Ronan, I hope CHOP is the place (the name is cool @ least!!)

  32. Marcia

    Dear Maya,
    Just reading your post caused tears to flow down my cheeks. My heart is in pieces due to this post. I wish I can take this crap cancer and stomp all over it, like it deserves. Just know that there is still hope and your little Ro will pull through this. Sending love, prayers and healing all the way from Canada. Love you Ronan.

  33. Desiree Jordan

    You don’t know me, (I’m Amanda Bedard’s cousin)… but I’ve been following your family’s story, and praying for Ronan (and ALL of you). After reading this post, I had to comment and let you know about all the people who’ve never met you, are rooting for Ronan! You are amazing. You and your husband are amazing through all of this. Your children are all amazing. Ronan will beat this…. I’m so sorry you are experiencing all of this, but prayers prevail. They really, really do. Keep hanging in there.

  34. Denise Kivela

    Maya,So sorry about “those” results but the battle isnt over yet,as long as you believe in JESUS CHRIST!!He’s the guy you want on your side!!Its probably hard now to focus on praying while your minds elsewhere but try to focus on the man”who stills the waters”!Thats Jesus Christ…he heals..

  35. Marcy Shipman

    No, no, no, no, no, no, no………. I haven’t had a chance to read the website for a few days and now I am completely and utterly heartbroken. I really had no doubt in my mind that Ronan was going to beat this……I still believe there will be a miracle through him, though. I just didn’t know it was going to be this hard. Unlike Dr. Kushner, I will NEVER give up on Ronan!! He is different and always has been different on this journey…..so just b/c the normal course of treatment didn’t work for him doesn’t mean this one won’t. This MIBG treatment will work…..it has to!!! I will continue to lift up your little Rockstar in prayer as well as your entire family! I can’t wait for the big celebration party there will be at the end of this journey….I know we’ve never met, but if you open it up to the masses I will make sure and travel to it!!

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