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


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6 Comments

  1. Rita Dickinson

     /  February 22, 2011

    You will be in my thoughts and prayers while you venture to San Francisco. You are doing everything just right to beat this stupid fucking cancer.

    Reply
  2. Marquita Ward

     /  February 22, 2011

    I pray that the Lord’s passionate love for you helps guide you into making the perfect decision. I pray you feel that love. I pray your anxiety will be lifted out of you and replaced with His peace…”My peace I give you, My peace I leave with you”…that’s what he said to me just before I had a hard physical test to go through for my heart…and it is Scripture..(power)..God is looking at your heart and He knows how good it is..He loves you and even likes you! He loves to “hang-out” with you. Feel His hand in yours..when you start slipping He will tighten His grip. Psalm 55:22 Cast your burden upon the Lord, and He will sustain you..”

    Reply
  3. Trish

     /  February 22, 2011

    Your correct in saying NO parent should be placed in your position. I know you and Woody, once you are armed with all the choices, will make the best choice for Ronan!

    God speed baby!

    Reply
  4. Michelle Hobbs

     /  February 22, 2011

    I’d say cancer stands no chance not only against your sweet son with that sparkle in his eyes, but against his firecracker mama bear too. You are handling things just as you should be…some days great, some days good, and some days with a sense of being overwhelmed in a way no one other than you and Woody can understand. The fact that you don’t have more days like the one you described yesterday shows you are doing much better than you think ;). Praying for your trip to San Fran. xomichelle

    Reply
  5. Wendy Ledford

     /  February 22, 2011

    Maya- I am praying for God to give you and Woody discernment as you make the best decision for your precious little boy’s treatment and care. When God gives you His peace and a mama’s intuition that simply can’t be explained….you will just “know”. I am not sure where you stand in your belief’s about the bible…but I believe every word is true & that it is God’s direct voice to us—and here is a scripture that I always love to remember when making a decision. In Psalm 33:8 “I will instruct you and teach you in the way you should go; I will guide you with My eye.” God’s eyes are watching over you and He knows everything. I pray He will show you clearly what decision to make. Much love and prayers to you and your sweet family.

    Reply
  6. Marcy Shipman

     /  February 23, 2011

    Your post has fired me up about the world we live in! I can’t even begin to imagine what you are going through! I actually have recently started volunteering at a children’s hospital here in the Dallas metro on the oncology. It is truly heart wrenching. Although, it is inspirational, too, because those kiddos are miraculous!!! They are definitely angels sent from above. With that said, I get FURIOUS when I try to talk about childhood cancer with my coworkers, friends, etc. and they just tell me I need to stop following the stories because its just too sad!!!!! That’s exactly why I follow Ronan’s story, volunteer, talk about it, etc…..it IS INCREDIBLY sad and something NEEDS to be done to stop it!!! Just ignoring it will do nothing and cause more and more children and families to have to experience this horrific disease. I wish I could do more!! With the amount of frustration I have (and I don’t even have a child with cancer) I can’t even begin to imagine the frustration and anxiety you feel having to fight this fight for one of you own children. So I think Mr. Sparky Eyes is right, you are doing ok. I feel that you wouldn’t be doing ok if you didn’t feel this anxiety. Its your own child for goodness sake! I used to flip out when one of my kiddos got a cold until I started following the world of childhood cancer, so I can’t fathom what I would feel like if I had a child fighting this horrific nightmare. I know that God will lead you and Woody in the right direction for Ronan’s treatment, but you are 100% right…NO PARENT SHOULD EVER HAVE TO MAKE THAT CALL!!! My thoughts and prayers continue to go up for you, Woody, and the boys.

    Reply

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