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.

Ro baby takes San Francisco

We are leaving this evening for San Francisco. Praying for a safe flight of course but most of all praying for a little bit of clarity. I hope by looking into Dr. Matthay’s eyes, that I will have a better feeling about everything. I am hoping she can give us some answers and guidance. I am hoping that Woody and I will walk away from this trip feeling a little more prepared for what we are up against. As of now, all we can do is gather all of the data possible and let our intuition guide us. I hope to get a feeling of what San Francisco can offer us.

Today, I met with my friend, Mr. Sparkly eyes. I put on my bravest face but he knew just by looking at me that I was a wreck. We sat for about 20 minutes and had it out. He asked me why I was second guessing myself… told me to knock it off and just to continue to do what we are doing. He is right, I have never been one to second guess my choices in life and I cannot start now. I listened as he pounded into my head once again, how strong I am, how strong Ronan is and how when the decision is made, it will be the right one. It was just the little pep talk I needed. I felt stronger after having left him and I know he is right in everything he is saying. I met Fernanda for a bite to eat at Chelsea’s but it was really just another little pow wow session that I needed to have. I am so lucky to be surround with such bright and beautiful people. I wish I could put Fernanda in my back pocket and take her with us. We sat and talked about everything from Ro’s path, which is uncertain as of now, to how we are going to get Oprah to listen to us and do a show on Childhood Cancer. Fernanda has been emailing Oprah every single day and has made it her personal mission to make Oprah listen. Could you imagine the good things that would come of this if she did?? The awareness that would be raised?? I don’t think it’s asking too much of her to change an episode of her show for something so important. I just pray that she hears all of the people asking this of her and chooses to do the right thing. She has the power to make this happen, if she would only listen. Her voice could change childhood cancer forever. Does she realize this?? I am not giving up on this Oprah thing, and if anyone can make it happen, it’s Fernanda. Thank you, F…. for lunch today and for the spirit of the person you embody. I swear to god you have wings. I have meaning to throw this quote in for a while. My friend, Melissa DiFilippo, who’s little girl is in Liam and Quinn’s first grade class sent me a message the other day on FB. It said, “When I grow up I want to be Fernanda.” It makes me laugh out loud and brings a smile to my face every time I think about it. I couldn’t agree more.

Alright world…. here we go. Off to San Fran and it’s time to take care of business. See you sooooooon New York Miss Macy!!!

xoxo

Magic Medicine, Day 4 and Day 5…. Round 7

What a beautiful, rainy day. My favorite kind of days. Being from the Pacific Northwest, I miss days like this so much. Ronan woke up happy as a clam, excited to know he was going home later this afternoon. We played in his bed for a little bit and then we went down to the cafeteria so I could get him his slurpee mix to put his oral chemo in. We came back to our room and talked to the nurse about discharge time and specific instructions as far as being back at the clinic tomorrow for the last day of cycle 7. Dr. Maze came up and sat with us for a while, played with Ronan, and we talked about the upcoming trips we are taking with Ronan to visit a couple of other hospitals. I had no idea, but his brother is the head of Anesthesiology at UCSF where we will be visiting on Wednesday. He sent him a message to let him know we were coming to the hospital to meet with Dr. Matthay. Ronan is excited to go to San Francisco and we have turned it into something really positive and exciting. I contacted somebody we were put in touch with whom works for Lucas Films. Lynne, has so graciously set up lunch on Wednesday over at the studios of Lucas Films and a little tour for Ronan. He cannot stop talking about going to visit Star Wars and New York Miss Macy, who just moved to San Francisco. It is going to be a short, productive trip. I am of course, over the moon about getting to see my love, Mace 🙂

I started this post yesterday but didn’t finish it last night due to falling asleep at 9:00 and sleeping all night long. It’s a miracle! I have not done that since before Ronan was diagnosed! My dreams were not even that horrific. I, of course, dreamt about Ronan and his cancer…. but my dreams were more peaceful than they have been in a long time. We went home yesterday around 3:30 and we are now back at the clinic for Ronan’s last day of this round of chemo. Liam and Quinn have the day off from school and Quinny is here with us while Liam is with Mimi and Papa. We will be finished here around 3 and Quinn is being such a good little helper. It was fun to introduce him to all of the people  here who are such a part of our lives now. He hears Ronan talk about them all day long and I think it was good for Quinn to put the faces that go with all the names. It was also good for Quinn to see what we do on a day-to-day basis while we are in the clinic. He likes to know what is going on with Ronan. Ronan is of course over the moon to spend the day with one of his brothers.

Fernanda came by the clinic and dropped me off a coffee (which I proceeded to knock over and spill) She called that, good luck. I of course chopped it up to nerves. I’m scattered today; nervous about meeting with the doctor in San Francisco. Dr. Eshun already told me that he spoke with Dr. Matthay and she is going to suggest we do MIBG treatment as soon as possible. I already knew this. Everybody is going to be biased in the way they want to treat Ronan’s cancer. But nobody really knows the correct answer. This is beyond fucked up to me. The fact that Woody and I are going to have to make a choice in regards to Ronan’s life and part of it is going to have to be based on a leap of faith. No parent should ever have to be put in that situation. I’m not one to get political one here because that would stir up too much shit, but HELLLLLLLOOOOO WHITEHOUSE!!!!!!! With all the money that you are spending on the world….. why don’t you throw a WHOLE bunch of it at Childhood Cancer so we can actually find a cure for this horrific disease that is killing MILLIONS OF CHILDREN?!?!?!?!?!?! They are our future and with the lack of funding, you are throwing away the lives of amazing children who would make this world a much better place.

I came across a quote by Mark Twain today and it made me smile. “There are three kinds of lies: lies, damn lies, and statistics.” I said at the beginning of all of this I was going to stop listening to the statistics for Ronan. I stand by what I said. He is not a statistic, he is my child. Many people do not want to associate cancer with children. It is just an unthinkable horror. It’s easy to dismiss the idea by saying, “This will never happen to my child.” Unfortunately, it happens more often than we’d like to believe. According to the National Childhood Cancer Foundation, one in every four elementary schools has a child with cancer. While many children are cured, there are still many children who will die.

When you lose your parents you are an orphan. When you lose your spouse you are a widow(er). There is no name for a parent who loses their child because it is just too unspeakable.

Why is the happening to my perfect little boy? Because there was never a boy born who is more beautiful in this world; so now he has to pay the price? I want an answer for something I will probably never know and it’s not fair. I want someone to be mad at and someone to blame, but that person does not exist. If I can’t have something tangible to blame, I want a cure, god damn it! I don’t want to have to put the life of my child on the line and trust my instinct in choosing his path. This is beyond unfair. It is sick, inhuman, and cruel. He does not deserves any of this! NO CHILD DOES! For all of you out there who are compassionate human beings; and I know you are because you continue to read this blog and pray for Ronan….. I dare you to come and spend the day at a hospital full of kids who have cancer. If your life is not affected, if you can walk away from all of this and never look back, you are reading the wrong blog. For those of you who are already doing something, big or small….thank you. The time is now to make a difference and your wake up call is here. It’s time to do something, whether it be to volunteer, to make a sick kid smile, or to help in raising awareness in any way possible. I wish I wasn’t getting my wake up call in life because my child has cancer. I wish I had someone telling me to do something. I would have listened if I had known this world existed. I lived a blind life full of a false sense that everything was perfect in the world, because my world was perfect. WHAT A BIG, FAT, LIE.

An innocently good day turned into a not so good night. Let’s see….. I threw up the one little thing I tried to eat for dinner, went to try to get gas in my car (had to leave due to not being able to get the gas to pump due to my head spinning) and then went to Target were I proceeded to abandon my cart due to almost having a severe panic attack in the store. Fernanda called just as I was walking out and I started bawling to her. She was like “What at the fuck are you doing trying to get gas for your car?” “That’s what we are all here for!” You know you are in trouble when getting gas seems overwhelming. In the mist of my bawling in the car before I left the parking lot I texted my Mr. Sparky eyes whom is always telling me that I am doing a great job at handling everything and I need to stop being so hard on myself. I said to him, “People that are doing o.k. do not have to leave in the middle of shopping at Target because they cannot focus on what they need to get. I am not o.k. and I cannot believe I have to make a decision in regards to my son’s life when nobody knows the right answer.” 2 minutes later, he called and basically talked me down from the ledge and sat on the phone and let me cry. He reassured me as he always does that we are doing everything right in our power and we are going to make the best decision for Ronan. He then told me how I am alright, I had just had a shitty day and tomorrow will be better. He also told me that anything I needed at Target, I really didn’t need anyway. He calmed me down as he always does with his wisdom and words. After talking to him, I was able to go and get gas for my car without any problems.

I came home to a hectic house of boys’ gone wild. My 3 little guys are so happy to be together, that it is hard to get them calmed down for bedtime. Lots of laughing and playing just as it should be.  San Francisco tomorrow. One more piece of the puzzle to put into place. Will it fit or not?? Only time will tell.

G’nite my loves. Thank you to Fernanda, Stacy, and Mr. Sparkly Eyes for being there for me tonight. Your words helped me through the night. I love you.

xoxo