San Francisco baby steps


Sitting on our plane back to Phoenix as I write this. This is something straight out of a movie. Yes, my baby has cancer. He is sound asleep beside me. As Woody and I watched him sleep, we held hands and talked quietly about all the decisions we have to make. I looked up at Woody and said, “He cannot die.” Woody looked at me and told me, “He’s not going to die, I won’t let that happen.” I then made him promise me. He promised as he squeezed my hand. Woody has yet to let me down in my life and I know he’s not going to start now. It is so unfair that my husband has to carry this huge weight around with him of something he has no control over. This ugly monster, Neuroblastoma, is trying to ruin our lives. But we won’t let it. It won’t win.

I left Phoenix with fear in my heart and tears in my eyes. Woody was trying so hard to make this a fun trip for us and I was trying not to get annoyed at him for keeping things light and cheerful. I tried my hardest to go fight him on having fun. Eventually, he won and our 24 hour trip turned into a really good time. We arrived to San Fran, grabbed our rental car, and headed to our hotel. We checked in around 8:30 p.m. and Woody headed out to one of his favorite record shops, which we happened to be staying right next to. He was like a little boy in a candy store. I stayed back at the hotel and Ro and I put on our P.J.’s and waited for New York Miss Macy to arrive. Ronan was so cute and excited. He kept staring out the window of our hotel, watching for her arrival. Soon, there was a knock at the door and Ro rushed to open it. There was our beautiful Mace, with her bright eyes shining and hugs all around. She came, once again with the best treats for Ronan. Including a bag full of candy, and Ronan’s favorite; candy corn! We all 3 cuddled up on our bed, played, laughed and talked. Woody came back with a bag full of old 45 records for his collection and some new C.D.’s. Macy was very excited about his findings and they started comparing favorite bands, concerts, etc….. Such a nice, normal night. For once, it was almost like the cancer cloud wasn’t hanging over our head. I notice this happens a lot when Macy is around. She brings such a positive light to our world… One that I don’t see very often anymore. She has the spirit of a child but the soul of someone wise beyond her years. When I am around Macy, I find all of our troubles disappear for the time being. Such a gift to me. Macy ended up going home around midnight and we all 3 curled up in bed and slept until 8 the next morning. One of my favorite things about Ronan is how he wakes up. It’s the same way everyday. It’s always him, touching my face, smiling at me, and saying, “Good Morning, Mom!” It is so simple and pure and he is always so happy. It’s as if he knows another day of life is here and he understands how precious each day on this earth really is. He is always so excited to wake up and see what the day has in store for him. Breaks my heart that most of his days are filled with hospital visits and doctors appointments. This doesn’t dampen his spirit though…. he knows how lucky he is to be loved as much as he is and surrounded by so many beautiful souls.

After we got up and ready this morning, Ro and I headed downstairs for breakfast. Macy soon joined us while Woody worked. As I was telling Macy about our adventure for the day, it occurred to me that she must come with us. We had a tour set up at Lucas Studios thanks to the ever so gracious, Lynne. Our tour guide, Chris, was expecting us at 11. Macy and I both looked at each other and knew instantly that she should absolutely come with us. I called Chris to make sure this was o.k. and he was so kind to say it was. The next thing I knew, we had totally hijacked Macy for the day and we were off and running to Lucas Studios. It was amazing! The studios are nuzzled in the middle of the city, but hidden in what I swear is its own little fortress. The views were to die for. We took our time strolling around outside, enjoying the sunshine and ocean air. We met Chris and he took us around for over an hour and a half. Ronan was in heaven, but I think out of all of us Woody enjoyed it the most just because he appreciated all the history behind it. Ro had a blast and was even left some gifts by Captain Rex himself. He was over the moon about his new light saber and toys. He finished off the day by chasing us all around and showing us his super cool Jedi moves. He had us all in stitches. Thank you so much, Lynne for this day. It will be one we will never forget.

After we left Lucas Studios it was time to head to UCSF to meet with Dr. Matthay. We dropped Macy off at her car and said our goodbyes. She may live in San Francisco now, but she will always be New York Miss Macy to me. I am so happy we were able to spend the time with her that we did. It meant the world to all of us and we can’t wait to go back for visits and to have her closer to AZ to visit us. Spirit Hoodies will reunite ;)

On our drive over to UCSF, I could tell Woody was as nervous as I was. We arrived right on time and sat in the waiting room for our consult. Dr. Matthay soon came out to greet us and we were taken back to a room to talk. I felt very comfortable with her instantly and I loved that when she went to examine Ronan, he went right to her as she scooped him up in her arms and set him on the table. We went over his history and his scans. She told us she did not want to give us a formal recommendation as far as his treatment goes because she wanted to look over his things a little more thoroughly. She is meeting with her board tomorrow and Ronan will be the topic of discussion and from there she should be able to tell us what she thinks our best options are. We talked today about what she thinks she would want to do and I fully believe in what she is saying, as she has the statistics and data to back it up. This woman means business. She eats, breathes, and lives everything Neuroblastoma. It is her life and I have no doubt she knows what she is doing. The question is, is it the right path for our son? We are still not sure, but are very open to listening to what she has to say. So, did I find the clarity I was looking for on this trip? Not really. I do know that our next step will be to go out to CHOP in Philadelphia to get their opinion as well. We are taking baby steps with this decision. Right now, we are still gathering all of our information and feeling things out. I am glad we went to San Francisco and we are not closing that door…. but I’m not getting the gut feeling I was looking for. That’s o.k. though because I feel as if San Francisco will lead us to where we need to go next. We would like to get out to Philly A.S.A.P. and then meet with Dr. Kusher at Sloan once again. The bottom line is, nothing will be decided until we do Ronan’s next set of scans. We just need to make sure we are fully prepared for our decision when the time comes depending on what his scan results show.

Yowzer. That was a lot of writing tonight. So tired. Beyond words, but I had so much to say. Love you all. Thank you to all of you for keeping up with us. Thank you to all of our beautiful friends for helping us through this. Thank you to my in-laws for taking such great care of my precious twins. We are so lucky, thankful, and blessed to have you all. Sweet dreams my dears.

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1 Comment

  1. Thanks for keeping me posted, such beautiful writings, I feel like I am side by side with you along the way..
    Stay strong, stay well. Keep having prayers that God will inspire and guide you to the best treatment for Ro. God will give you this guidance for this Sweet Child of God. He was sent specifically to Woody and Maya as he knew you’d be the best match ever…along with the twins. You’re an inspiration to all.
    hugs and love

    Reply

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