Magic Medicine…Day 4, Round 3

Today was a tough one. Ronan woke up mad that we are still here and he was still hooked up to his machine. I’ve got to come up with a name for his “pole.” Anyway, he wanted to be unhooked so badly and Dr. Maze must have talked to someone because they agreed to let him free for a couple of hours. The only catch was he couldn’t be unhooked until 10:45 a.m. Time means nothing to a 3 year old. All he knew is that he wasn’t getting unhooked right that moment and he was mad. I had a nurse in the room with me and Ronan threw the biggest fit for a good 20 minutes, screaming, hitting, pulling out cords and some of my hair. Oy vey! After I calmed him down, with the help of my nurse his little body finally gave in and went limp. I held him and started bawling. Kim, our nurse sat with me and rubbed Ronan’s back and tried to do her best to comfort me. She was really sweet. After that episode we went to the playroom for the rest of the morning and soon my friend, Sarah, aka the baby whisper came to give me a little break. Sarah is the one who was with Ronan when they finally let him off of his machine for a couple of hours. She said as soon as he was unhooked, he went running as fast as he could down the hallway. They played outside on the playground in the blistering heat for a long time. He was so hot, sweaty and tired from his hours of freedom. I am sad I missed it, but I really needed a break.  I went home and was pretty frazzled. After last night and this morning my emotions were running wild. Somehow I ended up in Ronan’s closet, on the floor, crying and calling my therapist. Imagine my surprise when she actually picked up the phone and I didn’t get a voicemail. In this day and age that is unheard of. Especially in our situation… to get an actual person on the phone without going through 10 other people, or going straight to voicemail is something that never happens. This is another reason that I know this is the right person for me to be talking to. Sarah picked up and I told her what was going on. We worked on finding a solution and what I am going to need to help me get through this time. I know there is not one answer to this problem… many things are going to help me get through this. She is helping me work on taking baby steps to get there. After our phone call, I felt a little better and took the next few hours to try to calm down and get a few things done around the house.

Woody and E.J. made it safely to New York. I will be waiting on pins and needles tomorrow to hear what the doctors have to say. I really hope they are in agreement and are encouraging as far as our plan for little Ro goes. This is a chapter in our book that we need to be closed. No looking back, no regrets. I will be glad when this part is done and over with.

We are hopefully getting out of here tomorrow, but I’m not sure. Ronan has to be hydrated after his chemo for 24 hours… so the nurse told me it may be Saturday morning before we can come home. I don’t know how in the world I am going to hold him off for one more day. He is like a caged animal in this place. He is doing really well with this strong dose of chemo though. He has only gotten sick to his stomach a few times which is amazing considering how strong of a dose it is. Knock on wood that it continues this way.

So that it all for tonight. Short, sweet, and to the point is all I’ve got to give.

Nighty night<3

13 thoughts on “Magic Medicine…Day 4, Round 3”

  1. Ronan is in my thoughts and prayers daily. You are all amazing people! ((hugs))

    Have you met, or heard of a beautiful baby girl, McKenna, who is nearing the end of her treatment in her battle with nueroblastoma? I have been following her and praying for her as well, she is also in treatment at PCH, just today, her mom posted pics on FB of her with the famed Dr. Maze, and I immediately thought of you guys. Mc Kenna’s story is very positive and I’m sure you would love talking to her mom. Just a thought.
    Again, continuing to pray for that tough little guy!

  2. you really seem to like your therapist…would you mind giving me her name? if you prefer not to post that information on here, i can e-mail the address for that info. let me know. i’ve recently come to need to talk to a therapist and your rave reviews have done the research for me.

    hope tomorrow is a great “easy” day for you and ronan! sweet dreams dear!

  3. Hi Maya —Our family keeps in close contact with your Mom, and eat at her deli as often as possible! My daughter, Kara, asked Lynn if you still worked out, and your Mom said, “No, for a number of reasons.” Excercise-aholics are common in my family, so Kara responded, “Maya really needs to do some kind of exercise, just to get out of the crazy zone she’s in.” Would that help you a bit? Love, Sue (your Mom’s friend)

  4. I read your blog daily and my heart just breaks for you and your little Ro! What a tough day and what an amazing person you are becoming through this journey. I know you think you are just making it but you are very strong, very real and so raw. I pray for the best outcome possible for your little guy!!

  5. Draggin boy? as in Dragon boy, draggin that darn pole around, you can hang a cape on it. He might be too young to get the dragon/draggin thing, but it’s a thought??

  6. that was a rough one. so glad you are in a safe place with your rockstar.A lot of tlc.Today hopefully will look brighter. Too bad you can’t transfer some of Ro’s energy, fit energy to yourself. Wouldn’t that be something. Anyway much love,hugs,and support for you from me.
    lol D

  7. I sense that the Lord is working in all these situations and He is to be trusted. Even when things seem to move slowly. I know it is God’s grace that made sure you got in touch with your therapist quickly. Give Him the glory and I am asking for more of that glory for you and Ronan in each situation that arises. Send Your Holy Spirit power and fill each need Lord, in Jesus name. In each trial you are gazing into the face of God, even though it doesn’t seem like it.

  8. Ummmm… Mom’s quote was not quite accurate, but exercise does wonders for MY state of mind (not that I have anywhere near the worries that you currently have). I find that exercise classes allow me to not think about anything big for awhile (other than the next move) and walking/running with a friend allows for a little friend time and/or venting. I hope you have the time & energy to work a little of that into your life. Thinking about you all often and happy to hear that Ronan got his playground time today!

  9. Since Ronan loves ASU’s “Sparky” and he sees Sparky as “strength” how about naming the pole Sparky? Or some name close to it?

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