Not following the yellow brick road


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

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

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

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

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

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

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

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13 thoughts on “Not following the yellow brick road

  1. Meghan Fable

    The only right path is the path that is right for Ronan. You have a world of people out here praying for all of you daily. He is one amazing, strong kiddo and we are behind you all 100%. Some friends may help you day to day, some may make you laugh, some may help you cry, some will listen to you shout, some do laundry and some just pray. Know we are all here. Sending extra love your way this Valentine’s Day. Hugs… Meghan

  2. Dorene Plampin

    Today being Valentine’s Day I send a lot of love.
    Also, know that prayers are always coming your way.
    Prayers for courage during this time of decision making.
    Ronan is such a cute kid. What a fighter.
    Love,D

  3. Emily

    We are thinking of you and your family tonight, Maya. I hope you know that everyone is out there pulling for Ronan and would do anything to make this be over. We love you and will continue our thoughts and prayers every single day.

  4. Brandy Walton

    Hi Ronan,

    Happy Valentines Day! You have lots of people praying for you and lots of support which I think is the most important thing! LOTS of love and support is good medicine too.

    *Hugs*…And Happy Valentines Day!

    Brandy

  5. Mary DeAngelis

    So sorry to hear about your setback, but that’s all it is, a temporary setback. Has anyone on your team spoken to Mark Dungan? He is a father of a neuroblastoma patient who appears to have done more research on this f#@!ing disease than most doctors. His blog alone is a wealth of information and I’m sure he would be more than willing to advise, clarify, etc. His website is http://www.sydneydungan.com. Anyway – you’ll make the right decision – because in the end it doesn’t matter – Ronan will beat this no matter what!

  6. Morgan :)

    Lots of good prayers and happy thoughts comin to your family! Youg uys are doing great and will make althe right decision when the time comes.

    Have you all tried contacting M.D. Anderson in Houston?

  7. Sheri

    I know that you and Woody will make the right decisions. You have the brains, the guts and the hearts! Sending love and good thoughts!

  8. sonia

    ok this is going to sound strange and like i’m sure you didn’t already think of it yourself but didn’t miss macy just move to san fran…and she was in new york when ronan was there? i mean i don’t know a thing about the difference in your treatment options but it’s just strange that one of them happen to be in san fran, no? i think your miss macy is some kind of angel that’s meant to be with you during your journey and just happens to be somewhere you might end up spending another length of time. the way things work out! just sayin’… 🙂 you’ve made all the right decisions so far and there is no doubt whatever you do choose will be the right one!

  9. Marquita Ward

    I pray the Lord will show His affection to you by filling every single need in your lives …in His time… always trusting in Him because He is a promise keeper. He made all of you and knows you so well. Thank You Lord in Jesus name.

  10. marcy lyon

    hi maya. i dont know if you follow this facebook page or not, but there is a little girl in dallas battling NB. she and her family just returned from san francisco for MIBG treatment. the facebook page is kick it kodi. maybe you can get in touch with her parents and exchange information and questions…i just thought his might help you in the information department!

    keep thinking positive thoughts and know that so many prayers are are going out for ronan and lifting him high.

    take care

    ~marcy

  11. marcy lyon

    and, i agree with sonia about miss macy moving to san francisco and the west coast maybe being a treatment option!!

    ~marcy

  12. Laura

    Our thoughts and prayers are with your entire family always. I know there are a lot of hard decisions but trust in your heart you will make the right ones together. We are so sorry that you are on this roller coaster that seems to have no end, hopefully things will start to make sense and be clearer soon. Check out all that is out there and don’t leave and rock unturned. Go where your heart takes you. Send copies of all the testing to all the experts like you are doing….one will feel right. All our love to your entire family!

  13. Jennifer Benedict

    No tears just lots of Love and Prayers for all of you. There will be no other decision but the right one for Ronan, this beautiful lil guy just seems to have his own way of having things done. Remember it’s not the size of a person it’s the strength and fight and that little boy has more strength and fight in him then most of us on here that are praying for him everyday. God Bless you all!

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