Magic Medicine… Day 2, Round 4

That stupid pit is back in my stomach today. It is the worst feeling. Makes me not want to eat, not want to sleep…. it’s like a dull, empty pain that comes and goes. And when it is here, it is a constant reminder of what we are up against. Before all of this, I didn’t even know what an Oncologist was. Yup, I was that naive. I thought the last thing we were going to hear is your child has cancer. I still think this is some kind of a sick joke. But staring at my baby’s bald head, as he peacefully sleeps… I am reminded that it is not. And it is more painful than anything I’ve ever felt in my life. When I was driving back to PCH today, after running home to shower and take a power nap… I thought to myself, how in the world can I ever go back to a normal life? A life before all of this? In a weird and twisted way, I have come to love our new life. It is a new life full of getting Ronan well and keeping him alive. He is still here. He is still alive. He is still mine. I am so thankful for that. I remember at the beginning of all of this, when we were talking to one of the doctors here about treatment options…. he told us that if we wanted to take Ronan home, to let him be at peace and not do any of the treatments, that they wouldn’t fight us about it. His words still haunt me….how in the world could that have even been an option?? To give up on your baby and not do everything in your power to help him fight though this…I can’t even imagine. I am very thankful we caught this when we did. A month or two later… and it could have been too late. We are going to do everything we possibly can to get him well… I have no doubt that what we are doing will work.

Ronan has his chemo running through him for 72 hours straight. It is a little clear bag, full of some orange fluid. He is sleeping now, but seems to be tolerating it pretty well so far. My little fighter. Woody and I met with Dr. Eshun today to go over our plan with him for NYC. We are working getting all of the dates finalized and set. No matter what the case, my stomach always goes into knots when we have to meet with a doctor. Guess it just goes with the territory though and I need to learn to get used to it. This is not going away any time soon.

The little boy who we are sharing the room with is still alone. I hear him talking to his mom on the phone every once in a while. He just called her to ask if she was o.k…. he wants to know what she is watching on T.V. and wants to know if his dad is asleep. He sounds so happy just to even talk to his mom on the phone. I could just eat him up.We’ve been with him since yesterday around 4… and no parents have been here. Not even during the night. I cry for him. He is the sweetest little thing and he doesn’t make a peep. I want to bring him all sorts of toys and things to play with. He never asks for a thing… even after the dozen times that I have asked him if he needs anything. Sweet kid. Shitty situation. Life really is not fair sometimes.

Last night I slept about 3 hours. Better than nothing. I am paying for it tonight though… very tired. No matter how tired I am, I never sleep well here. Too many people coming in and out, too many beeping noises, too cold, etc….. It’s fine though… I could stare at Ronan all night long and never tire of it.

Before I try to get some rest I wanted to say a big thank you to The Academy House in my hometown for putting on a wonderful fundraiser in Ronan’s name. I am floored by all the people who showed up, all of the money raised, and the beautiful spirits of the young kids who worked so very hard to raise awareness for Ro’s cancer. Also, a big hug to Lisa for organizing everything and being the force behind it. The love and support from my hometown has been amazing and I am so thankful and proud to be a Longview/Kelso girl.

Sweet dreams to you all out there. Thank you for loving us, believing in us, and fighting for us. I’ve said it before, but I’ll say it again… I will never forget the love you all have shown us and I will forever be changed because of each and every one of you. G’nite<3<3<3

And P.S. Gay, I love you and your messages. Thank you for checking on me… sorry for not calling you back… will call you tomorrow. And you and your guys’ are NEVER too much for us. That was the best Halloween ever. Thank you for sharing it with us… we adore you all and are so lucky to have you in our lives.

9 thoughts on “Magic Medicine… Day 2, Round 4”

  1. Thank you for dilegently keeping up with your blog. I know it takes time from your family but I believe firmly that it is and has been a good outlet for you and I appreciate it because I care so deeply. I am so sorry that you have to have heard and be haunted by what that Dr.said in the beginning. I am happy that you are not that kind of mom! you are the strongest mom I know and we all love you for it!! I wish and pray everyday that you don’t have to be where you are and that all will be good and someday I can hug you all! I will keep praying that prayer until you are hugged! 🙂 I am not sure how religious you are but I read John 9 . It is the story of Jesus curing the blind man and when asked why he wasn’t made to see in the first place jesus said it was to set the example (explained much better in the Bible) But to set an example and be that miracle that the world needed to see and I feel Ronan is it! the example….

  2. Maya, you probably have no idea what an inspiration you are to so many! You are one VERY strong mama and Ronan is SO blessed to have you as his mom. Thank YOU for sharing so much. I truly believe that you are changing many lives by being so open with what you are going through. Know that our family is thinking of you and praying for your family every night. Much love, Melanie

  3. I was not trying to bother you just wanted to check in like I always do when you are in chemo. I worry for you all and when I did not hear from you my worry barometer goes high. So, glad to hear that round 4 is not any different from the rest so far. We all pray more then you can imagine that all goes smoothly. You truly do not know what an inspiration you and Ronan are to everyone. Nick our 11 yr old after prayer at dinner said, “mom seeing Ronan the other night made the hair on my neck stand on end knowing what he is going through and why isn’t life more fair?” Talk about Childhood Cancer and awareness. It has made an impact on our family and we forever will be creating awareness along with your family. May you all stay beautiful and rested.

    xoxo

    The Willits Family

  4. “Women are like teabags; you never know how strong they are until they’re put in hot water.”
    Eleanor Roosevelt

    Character shows when the chips are down and yours will be strengthened each day as you put Ronan and family first.

  5. I can’t believe a doctor gives that option at the beginning either. So sorry that you have to be haunted by those words. You are an amazing woman for being strong and fighting for your child’s life! As a mother I can’t imagine another option, either, though. As for the little boy that you are sharing a room with….my heart breaks in a million pieces for him! He is one of the reasons I’m volunteering to be a Child Life specialist in the oncology center at Cook Children’s. Saying lots of prayers for Ronan and for the little boy you are sharing a room with. I’m praying for peace and sleep for you as well, because the stress you are going through is unimaginable.

  6. Maya,
    You are amazing and inspiring. That doctor clearly did not realize you were going to move heaven and earth to make sure Ronan lives a long and happy life. I can’t wait for the day you post that you received the news that Ronan is cancer free. You remind us all to not sweat the small stuff and humble us. Talk about being ashamed and embarrassed. Every parent should walk a day in your shoes to put life in prospective. XO Melissa

  7. Maya-

    I thought about you guys the night of Halloween. I’m not sure if you are familiar with the Facebook movement trying to get Oprah to do a show on childhood cancer. Anyhoo…….we were asked to pass out flyers with our candy. The flyers asked people to join the Facebook movement to bring awareness to childhood cancer. The first child & parent knocked on our door & of course we gave them a flyer. They left & a few seconds later the dad was back knocking at our door. He came back to tell us that his son is a four year cancer survivor. We know his son!!! He goes to the same school & is in the same grade that my son is (Kwesi who has a pineoblastoma)!! I was completely shocked because this kid is ALWAYS running around outside (his outside playing as I type). I asked the dad what kind of cancer his son had and he said neuroblastoma, stage 4. I automatically thought of you and wanted to share their story. Hopefully this will strengthen your hope and faith. Dad said it was a tough fight, but he is absolutely fine now! So stay encouraged & we will continue to send up prayers and postive energy for you, your baby boy, and your entire family.

  8. I know the feeling of just wanting to watch your baby sleep and relish this time that they are still here with us. I know that our babies are going to get better. We love them too much to let them go. You and Ronan and all of your family are in my prayers each night. Stay strong and remember the oxygen mask. Take good care of yourself too so that you can be there for everyone else who needs you.

    Love,
    Michiko
    Mom to Kimiko, age 4, dx 9/21/10, NB stage 4

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