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

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11 thoughts on “Bone scans results…. kind of.

  1. Rita Dickinson

    Sending love and strength his way. It sounds so hopeful. If you need help with anything, ANYTHING, please let me know.

  2. Michiko Lindsey

    Maya,

    I know you are consumed but would you please call me at 619-218-2040 whenever you have time, night or day? I am in court battle with my ex-husband to move my daughter’s care to Dr. La Quaglia at Sloan Kettering. I am not satisfied with the care at our local hospital, Rady’s Children, and I do not want to do the stem cell transplant(s).

    I have a hearing set for Wednesday morning to try to get judge to order treatment with Dr. L. Would really appreciate your input and experience and to discuss your reasons for continuing with COG study protocol.

    I pray for you and Ronan every day. I know that our kids our both going to make it!

    Love,
    Michiko Lindsey
    619-218-2040
    http://www.caringbridge.org/visit/kimikobeatscancer

  3. Willits family

    Still sending love, prayers and strength. You can make it tomorrow. Sorry I cannot come and sit with you. May God keep you strong. Much much love

    Gay and family

  4. sonia

    first off, that’s exciting news with ronan’s preliminary results. i hope you were able to get a little bit of sleep last night!

    i went on ava’s website…oh my she’s a little cutie. i just want to pick her up and squeeze her 🙂 you can really see that same fire in her eyes as ronan. both such fighters!

    take care. always thinking about you!

  5. Suba Dhinakar

    Dear Maya,
    I was so happy to hear about the scan results. Praying for more good news and for speedy recovery/healing for your little Ronan, the warrior. Now I have started reading your posts to my children 9 and 6 years old as well (excluding some parts) and we all pray together. No mother or father or family should ever have to go through this. I held my children close and said a prayer as well. Reading your posts, I have learnt to not sweat the small stuffs and really cherish their childhood along with all the tantrums and whinings.. Thank you for being my hero. I wish dearest Ronan everything the life has got to offer. You are a very strong person and i wish you all the happiness. He is going to beat this and going to run and around and play like we all wish. Even in this hard times, i admire your willingness to keep up this blog so all of Ronan’s well-wishers can be updated. thank you Maya. Please take care of your health as well. God bless your family and keep you all safe in his arms. Our prayers are with you.
    caringly,
    Suba Dhinakar, Nila 9, Chandha 6.

  6. Alyssa Crews

    I knew the scan would be good!! Praying the ones today will be all clear as well. And hoping Ronan won’t feel too bad after waking up. He is amazing! Keep on staying strong 🙂 sending prayers, love, hope, strength and always… believing!
    Alyssa
    COLE Prayer Team
    http://www.colesfoundation.org

  7. Marcy Shipman

    That is such great news!! Every tiny little bit of good news is a HUGE victory in the fight against this nasty thing called cancer! That is so great that you got to meet little Ava. I started following her story a few months ago and that little girl is quite the fighter. She is absolutely adorable (in her pictures anyway). I think of her as my little girl version of Ronan when I read her story. I also saw that they did a write up about Ronan on Braden’s Hope Facebook page….that is so awesome! That family is so amazing, so I’m so excited to see you’ve connected with them in some way. As always, Maya, Ronan, Woody, Liam, and Quinn will continue to be in my thoughts and prayers. You all are such an inspiration….keep up the amazing work!!

  8. Nance

    Maya,

    You’ve learned the secret: prayer can give you God’s peace which passess all understanding. Even in the midst of something terrible you can be calm and quiet by asking God for peace. I’ve felt that wave of warmth, it’s good.

    Keep praying, He wants to help.

  9. cynthia phillips

    Yes, you are almost home for good – I know Ronan will run withhis brothers soon.
    One more step with the cells.
    wonderful !

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