What a beautiful, rainy day. My favorite kind of day. 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 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 for 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 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 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 someone we were put in touch with who works for Lucasfilm. Lynne has so graciously set up lunch on Wednesday at the studios and a little tour for Ronan. He cannot stop talking about visiting 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 because I fell asleep at 9:00 and slept all night long.
It’s a miracle.
I have not done that since before Ronan was diagnosed.
My dreams weren’t even that horrific. Of course, I dreamt about Ronan and his cancer… but they were more peaceful than they’ve been in a long time.
We went home yesterday around 3:30, and now we are 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 3:00, and Quinn is being such a good little helper. It was fun to introduce him to all 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 faces to the names.
It was also good for him to see what we do on a day-to-day basis at the clinic. He likes to know what is going on with Ronan. And Ronan is, of course, over the moon to spend the day with one of his brothers.
Fernanda came by the clinic and dropped off a coffee (which I promptly knocked over and spilled). She called that good luck. I chalked it up to nerves.
I’m scattered today.
I’m 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 toward the treatment they believe in.
But nobody really knows the correct answer.
And that is beyond fucked up to me.
The fact that Woody and I are going to have to make a choice regarding Ronan’s life — and part of it will be based on a leap of faith — is something no parent should ever have to do.
I’m not one to get political on here because it stirs up too much, but HELLO WHITE HOUSE.
With all the money being thrown around in this world, why are we not throwing a massive amount at childhood cancer research?
Why are we not prioritizing curing a disease that is killing children?
They are our future. And the lack of funding is a choice. A choice that costs lives.
I came across a Mark Twain quote today that made me smile:
“There are three kinds of lies: lies, damn lies, and statistics.”
At the beginning of all of this, I said I was going to stop listening to statistics for Ronan.
I stand by that.
He is not a statistic. He is my child.
Many people do not want to associate cancer with children. It is too horrifying. It’s easier to say, “That will never happen to my child.”
But it does.
According to the National Childhood Cancer Foundation, one in four elementary schools has a child with cancer.
One in four.
While many children are cured, many still die.
When you lose your parents, you are an orphan.
When you lose your spouse, you are a widow or widower.
There is no name for a parent who loses their child.
Because it is too unspeakable.
Why is this happening to my perfect little boy?
Was there never a more beautiful boy born into this world?
Why does he have to pay the price?
I want an answer for something I will probably never know. And it is not fair.
I want someone to blame. I want something tangible to point at.
But there is no villain in the corner of the room.
So if I can’t have someone to blame, then I want a cure.
God damn it, I want a cure.
I do not want to gamble with the life of my child and “trust my instinct” because the science isn’t definitive.
This is unfair. It is cruel. It is inhuman.
He does not deserve this.
NO CHILD DOES.
If you are reading this and you are compassionate — and I know you are — I dare you to spend one day in a pediatric oncology ward.
If you can walk away unaffected, you are reading the wrong blog.
For those of you already doing something — big or small — thank you.
The time to care is now.
Volunteer. Donate. Raise awareness. Make a sick child smile.
Do something.
I wish I wasn’t getting my wake-up call because my child has cancer.
I wish someone had shaken me before this and said, “Look at this world.”
I would have listened.
I lived a blind life believing everything was perfect because my world was perfect.
What a big, fat lie.
An innocently good day turned into a not-so-good night.
I threw up the one little thing I tried to eat for dinner.
I tried to get gas and had to leave because my head was spinning.
I went to Target and abandoned my cart because I was on the verge of a full-blown panic attack.
Fernanda called just as I was walking out, and I started bawling.
“What the fuck are you doing trying to get gas?” she said. “That’s what we’re all here for.”
You know you’re in trouble when getting gas feels overwhelming.
While I was crying in the car, I texted Mr. Sparkly Eyes, who is always reminding me that I am doing a good job and need to stop being so hard on myself.
I wrote:
“People who are okay don’t leave Target mid-shop because they can’t focus. I am not okay. And I cannot believe I have to make a life decision for my son when nobody knows the right answer.”
Two minutes later, he called.
He talked me down. He let me cry. He reminded me that we are doing everything humanly possible. That tomorrow will be better. That I don’t need anything from Target anyway.
He calmed me, like he always does.
After that, I was able to get gas without falling apart.
I came home to a chaotic house of boys gone wild.
My three little guys are so happy to be together that calming them down for bedtime is nearly impossible.
So much laughing. So much playing.
Exactly how it should be.
San Francisco tomorrow.
Another piece of the puzzle.
Will it fit?
Only time will tell.
G’night, my loves.
Thank you to Fernanda, Stacy, and Mr. Sparkly Eyes for carrying me tonight.
I love you.
xoxo
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