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 with 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 ready for a great weekend. We took Ronan to the twins’ basketball game on Saturday and had a wonderful time. Afterward, I came home with Ro and my mom, and we were playing outside in the backyard, enjoying the sunshine and warmth of the day.

Thirty minutes later, Woody arrived, came storming outside, and demanded that he needed to have a serious conversation with me — now.

My stomach instantly dropped. My heart fell to the floor. 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 three days prior if I thought we were getting one transplant or two. I looked him dead in the eye and said, “One.”

He said, “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 — day one of Ronan’s diagnosis. 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. Woody went straight into Woody mode and armed himself with as much information as possible regarding other alternatives. He figured out who we needed to call to get answers. He has spoken with several doctors in New York, San Francisco, Chicago, and Atlanta.

Time is not on our side, and time is not our friend.

The one thing every doctor Woody has spoken with cannot figure out is this: Ronan’s bone scan is negative, his bone marrow is clean, his VMA (urine test) is negative — yet he still has so many spots left on the MIBG scan.

Dr. Kushner believes the neuroblastoma is still in Ronan’s bone marrow, not his bones.

We are at a crossroads and are basically looking at two different options. As of now, we are deciding between 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 he had been 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. Maybe Ronan was not meant to have a transplant at all because it wasn’t the right answer. I have felt uneasy about this whole transplant thing from the beginning.

I know what my heart and gut are telling me the right answer is… but I think it is going to be a day or two until that 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. You can never really 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 you’re in a bad place when not even Danielle’s toxic margaritas can mask your pain.

We came home 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 what was supposed to be my “sending off” into isolation. Instead, it turned into: okay… 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 surrounded by the most beautiful women in the world, it is impossible not to. 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 being 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 your continued prayers, your 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 would be 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 every day, 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 have done enough crying the past few days for each and every one of you.

This is a blessing in disguise.

It has to be.