Magic Medicine…. Day One, Round 4

We are here and settled in our room. The first room we were put in, was drab and small and we didn’t have a window view. I immediately told the nurse, if a window view room opened up, to please let me know so we could move. The little girl we were sharing a room with, sounded like she was hacking up a lung so I told our nurse, Ronda, it was making me nervous and I requested a room change. Voila! New room and a window view. Very grateful. There was no way I was going to survive 5 days here in the cramped dark space that we were in before. Ronan didn’t nap today, so he fell asleep a bit ago. I did not want that to happen, but there was no keeping him awake. He was in pretty good spirits today, lots of energy. He wasn’t happy about coming here but I just explained to him that we have to get his “Magic Medicine,” to make him all better. He seemed o.k. with that explanation and keeps talking about his medicine that is going to make him better so he can get his Iron Man out of his chest. Sweet little guy. I can’t wait for the day that we can take that thing out of his chest. And then we are going to burn it.

While we were at the clinic today, Ronan took out his favorite little blanket that he has had since the day he was born. He was tired and he was snuggling with it. When we got over here, I went to unpack his bags and realized I didn’t have “KiKi,” (the name of his blanket) Holy PANIC! He has never slept a night without that thing! I figured we left it over at the clinic so I called and had our lovely Elaine put on the case of finding it. Thank the lucky stars above…. it was found and someone from here ran over to get it for me. A night without that thing would have been disastrous. Our new roommate is a little boy who seems to be around 8. His parents have not been here at all today and as I’m writing this at 7:30 tonight… they are still nowhere in sight. I went and introduced myself and told him to let me know if he needed anything. Breaks my heart. I will always be grateful for being able to spend this time with Ronan. I could not imagine having to leave his side. This hospital is filled with babies and kids who are cared for by the nurses because their parents can’t be there. It is really sad to see.

I am missing being at home tonight with my husband and big boys. I wish I could be cooking dinner and reading them books and snuggling up with Woo to watch one of our shows. In our old life, that is what we would be doing. That old life seems like it was so very long ago. What I wouldn’t give for a taste of that again. I know we are on our way there… slowly but surely we will win this race. Speaking of races, I started reading Lance Armstrong’s book, “It’s Not About the Bike.” What an extraordinary man he is. I have a newfound respect for him and all he has accomplished.

I am doing o.k. tonight. I will be strong and get Ro through this week. He deserves a mommy that will fight for him and be strong. I can be that mommy. He is worth everything I have.

Goodnight, my friends. Sleep tight<3

7 thoughts on “Magic Medicine…. Day One, Round 4”

  1. Can’t believe you have to share a room. That must be awful. Makes me appreciate the private rooms at City of Hope and Rady’s Children’s Hospital.

    My prayers that this round goes well. We are doing our stem cell harvest tomorrow, then all the scans before we start round 3 of chemo next week.

    Love,
    Kimiko’s mommy

  2. Wil had his port a cath made into a necklace a couple of years ago and wears it. nice conversation piece. Might not want to burn it. Also, great for lots of show and tells, etc.

  3. When I read your comment about the port, I remembered mine and how I sometimes didn’t appreciate it. Even as an adult. I know it is better than having a needle in your arm all the time though. Mine was my favorite color, purple, even though I couldn’t see it. When they finally took it out that was nice. Just a little scar left now. A little reminder.
    I pray that the Lord brings His Comforter every day to fill Ronan’s needs. It seems that the Lord is coming through with all of that. The healing is on it’s way! He is truly carrying you through this as He did me. Thank You Lord..for what You did, are doing and will do. In Jesus name amen.

  4. My name is Jennifer Leahy and I am a long time friend of Brandon and Janette. Following your journey from the beginning, my heart and prayers have been with you every day. I am a mother of a vibrant, smart, adorable 5 year old boy. I truly get your love and strength. I am a better mother to him because of your story, and I thank you for that gift.

    My morning starts with your blog. It keeps me grounded and sets a good reminder of how to live each day.

    Today’s post was especially core shaking. My exposure to this disease is through your eyes where Ronan’s world has been turned upside down in unimaginable ways no child or mother should ever experience. It is also a world filled with so much love it is bursting through the seams. Working with Brandon, I see every day the “Rockstar Ronan” balloon and ice cooler with the Words: Rock Star Ronan’s ice cream hand written, just waiting for the right time to be delivered. I read your beautifully written words of incredible attitude, strength and unwavering love. Reading about the 8 year old boy (Cameron’s age) not having his parents there all day is unthinkable and heartbreaking. We are all so blessed to be surrounded by abundance. I will send some anonymous “love” his way.

    This quote was meant for you Maya, “To the world you may be just one person, but to one person you may be the world.”

    ~Love, Light and Blessings!

  5. My thoughts are with you and Ronan everyday. Now all I have to do is type ‘r’ in my browser and this is the first site that comes up.

    I hope this round of magic medicine is a success!

    God bless,
    Megan

  6. Maya, you are so strong as you live this nightmare and you are Ronan’s best advocate. It’s great that you asked for another room for your son and then offered to heip another little boy there. You’re amazing and so is your husband and all the angels helping you. I’d like to help in some way even though you don’t know me. If there are ways those of us connected by reading your blog can do something to somehow make a difference in this fight just say what you need and it’ll be done.

    Continue to stay strong by feeling the strength of all the prayers being said for Ronan every day.

    May this week go quickly for you and Ronan!

    Martha Cooper

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