There is nothing sweeter than kissing the bald head of a cancer child


You
know how some things in life were just so meant to be? Things like
this seem to be happening to me often these days, but today it is
truer than ever. I’ve mentioned before my new friend, Macy, who did
not know me, but my blog was passed along to her through a friend.
She lives in NYC and sent me a message saying if there was anything
I needed, to please contact her. I went on Facebook, friend
requested her, and we hit it off immediately. She went to ASU as
well and graduated a year ahead of me. She is nothing short of
amazing. She came to the hospital this morning with her big bright
green eyes, coffee and bagels. She did not leave the hospital until
10:00 tonight. She stayed the entire day today, we had so much fun
getting to know each other and Ronan is in L.O.V.E. The two of us
have so much in common it is scary. I had the best day today. We
played with R, laughed, got to know each other, and Ronan
absolutely loves having her here. My little guy normally kicks
everyone out. He has loved Macy since the moment he laid eyes on
her. She helped me so much today, watched as Ronan had his broviac
dressing changed, helped me talk him though it, read him books, and
just loved on our little guy. It was a very special day to say the
least. How did I get so lucky to come across this amazing soul?? I
am amazed everyday by the blessings in my life. Love you, Macy….
can’t wait for you to move to San Fran so we can be closer to each
other!!

Ronan got his chest tube out today and everyday I am more
and more impressed by my little guy. It looked freaking painful,
and he didn’t even flinch. He just laid there and let them pull
this big tube out of the side of his abdomen. He is such an angel
with all of the poking and prodding, it is amazing to witness. Macy
was dying when he was getting his Broviac dressing changed. Our
nurse, Julia, was so good at doing it and was so gentle, but it
still hurts. He sat as still as he could and in his little voice
was saying things like, “I need a break,” “Please don’t rip my
skin!” and “Please I need a band-aid!” UGH. It kills me every time.
I about died when he was telling her not to rip his skin, but he
made sure to say please before. I mean, are you kidding me with
this kid?? All the nurses and doctors here are in love with Ronan
and cannot get over his big blue eyes and how well behaved he is.
I’m telling you, he is a brand new boy, his whole attitude is
different. He is showing cancer who is boss.

So, today we got word that the study we are on, COG, emailed Dr. Kusher to say that we needed to come home for Round 6 of chemo, otherwise we are going to be kicked off of the study we are on. I am beyond pissed. All of our doctors said it was o.k. to stay here, the doctors here are fine with it, but we are just now being told that it is not o.k., even thought he would be getting the same dose of chemo here than he would be getting a PCH. Does not make sense to me at all. I told
Dr. La Quaglia to please see if we could stay, but I have a feeling
it is out of his hands. I’m pissed. I am a girl who likes a plan
and we had a great plan in place. I wanted to get Ronan as healed
as possible and just get his chemo started pronto here and get it
done and over with. Now, I have to pack up everything, put my baby
on a germ infested flight because we didn’t have time to contact
anyone who could fly us home, risk his immune system, and
everything feels so rushed. I am beyond annoyed and I don’t know
why stupid COG is just now letting us know this. I feel very
unprepared and honestly, I am not ready to go back to Phoenix. I
was in such a funk there and the proof is in the pudding. Tricia
told me tonight that she was talking to Marisa and they have both
been saying how great I sound, how I sound like the old Maya. It’s
this city I tell ya. It has healed me a bit because everything here
has been so positive. The energy, the buzz, the doctors, the
hospital….. everything is top notch. Our doctors come by at least
twice a day, stay around forever, and the care here is amazing.
Even the lady who takes out our garbage comes walking in with a
smile and saying, “There’s my Ro baby! How you doing today,
gorgeous?” The freaking garbage lady knows Ronan’s name and is
always happy and smiling. New York has been a rebirth not only for
Ronan, but for myself as well. What if that all goes away when I
get back to Phoenix?? I know I can’t stay here forever, but I had
already prepared myself for another couple of weeks. The bottom
line is, I don’t want to rush anything with Ronan… the baby just
had a major surgery and I feel like letting him heal here is the
best thing for him. I’m letting it go… I don’t have a choice. I
can’t fight the COG people…. so whatever happens, happens and we
will make the best of it. I’ll admit, I’ve gotten spoiled here. The
care is unlike anything I’ve ever experienced and they make you
feel like you actually do matter, like you’re not just another
statistic.

Today was full of exciting things. Ronan felt great, we played a lot. I made him some homemade slime which he loved, but
did not want to touch. My hands are still purple from the food
coloring. So funny. Guess who else made it a great day?!?! My
Tricia Boo! She is here, safe and sound. I almost fell to the floor
when she walked in the room. Instead, I cried and held her for a
very long time. I’ve missed my BFF way too much. It is going to be
so great to have her here. Macy got to meet her and they totally
hit it off. Ronan was in HEAVEN. He was so adorable, just sitting
in his bed, watching us girls gossip and laugh. Tricia and I
somehow got on the subject of the movie, “The House Bunny” and we
were doing funny lines from the movie since Macy has never seen it.
I have not heard Ronan laugh in days, but tonight as we were doing
our funny lines, he was watching us and laughing so hard from his
belly. Oh, it was the sweetest sound to hear. He must think we are
nuts, but he was loving every second of it. We had so much fun
tonight. I am so thankful to have TT here. Talk about a true
friend.

My last bit of exciting news for the night is insane! A
reporter from US Weekly contacted me because they heard about Jake
Gyllenhaal’s visit to Sloan Kettering though my blog! They want to
talk to me more about it and the girl was so touched by Ronan’s
story, she said to please let her know if there is anything they
can do. I emailed her back and told her I would be happy to talk to
her, but I was requesting two things. 1) For her to please get
Ronan’s website in US Weekly… anywhere. I told her how important
it is to raise awareness for what so many children are going
through. And 2) I asked her to please get my Liz a date with Jake!
I was half joking on the second request but thought I’d put it out
there. She sent me an email saying, Of course she would (not sure
if she was talking about the website thing or the date for Liz) but
regardless, she is calling me tomorrow. I’m going to try my best to
get her to help me spread the word on Ronan. And I only have the
nicest things to say about meeting Jake. He was a gem. I’m so going
to try to get him to take on childhood cancer as his charity. I
know he does a lot of things for animals, which is so amazing….
but these kids need a voice and I feel like he has the heart to do
it. Overload tonight. I had so much to share and could keep going
but my eyes are drifting off. Tonight, I am so thankful and so
blessed to be surrounded by such beauty. Ronan shows me everyday
what it truly means to be brave and strong. He is such an old soul.
My very own Master Yoda:) Sweetest dreams, friends. xoxo Ronan and
Macy!!

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10 thoughts on “There is nothing sweeter than kissing the bald head of a cancer child

  1. Pingback: Tweets that mention There is nothing sweeter than kissing a bald head of a cancer child « ROCKSTAR RONAN -- Topsy.com

  2. Sarah

    I hope everything works out for Ronan and his treatments where ever you end up. What a sweet boy being so kind during this ordeal my goodness he is angel! Great news about spreading awareness for childhood cancer. Next week I plan on posting about Ronan on my blog. I hope that my followers will tell their followers and help spread the word even more, maybe not like US weekly but some!

  3. Alyssa Crews

    I love the title! From my own experience, I can totally agree that there really is nothing sweeter than kissing the bald head of a cancer child. And then life is changed from that moment on. Dude, Ronan is awesome. I have seen grown men getting their chest tubes out, and you’d have thought the world was ending! And he didn’t even flinch!! Thats intense. Sweet boy. I wish you could stay in NYC for round 6 like you planned :/ ugh! I pray that when you go back you will have that same feeling of really mattering, since you do. And I hope you never, ever feel like just another statistic…if you do I’ll be really pissed. Praise for your friend Tricia getting to you safely. Hoping Jake will step up for childhood cancer. Maybe one day we’ll see as many gold/orange ribbions in September as we see pink in October. Praying for you and for your husband and boys and praying for Ronan to keep doing well, to stay safe and germ free when you go back home, and for him to be rid of cancer once and for all. Sending love and believing…
    A
    COLE Prayer Team, http://www.colesfoundation.org

  4. Sue Brigman

    Wow. Sounds like you had quite a day of both ups & downs. I hate to sound dumb, but what, exactly, is a “COG”, and how do they have the right to make a decision that might not be in Ronan’s best interests? Who are “they”, and why do they have the right to make decisons like this! Sue, Longview

  5. Shelli & Gibson

    We are praying they make the decision to allow the treatment to be held in NYC. Thank you for letting us follow along with your journey through your updates. My brother journaled in caringbridge.org/visit/zipmurray and it is truly amazing what the power of awareness can make! Thank you, thank you, thank you for sharing so we have an opportunity to send blessings and love your way!

  6. Kathy

    I’ve been following your blog pretty much from the beginning.

    You write so eloquently and passionately about what you are
    going through. I have never EVER left a response on a blog before.
    I do not personally know you or your family. But we do have one
    enemy in common-cancer. You wrote something today that touched
    me and here I am writing a response. (though I am re-reading
    this response easily 50 times to makes sure it does not sound
    pedantic, I am trying to be supportive!)

    I was diagnosed with cancer in 1999 . So here I am now
    an almost 12 years survivor.

    When I was first diagnosed , I recall
    speaking to someone about being in a study, and those details
    today are fuzzy but it seemed to me that a decision had
    to be made quickly and I thought a good treatment plan
    for me had already been laid out. A couple of times during
    my cancer journey some last minute changes were injected
    (no pun intended) and this was additional stress I did not
    need. So when I read about a potential last minute change
    to Ronan’s plan for where to receive this chemo, based on
    what the study required, it really touched a nerve with me.
    I ultimately decided not be in a study after speaking to
    my oncologist who assured me whether I was in a study or
    not , I would be receiving the best care and treatment
    the hospital would offer anyway.
    Many years before I was diagnosed with cancer I lived
    in NYC. I look back at my time in NYC and say it was the best
    place I have ever lived for so many reasons. The energy
    there is transformational.
    Based on how well Ronan is doing in NYC and all the
    fabulously great things you say about the doctors,
    I understand how hard it would be to suddenly
    uproot him now after his very recent surgery.
    My understanding of what you wrote about the study
    indicates that it is randomized based on one or two
    stem cell transplants. So if I am not understanding all
    the issues with the study , I apologize. But regardless
    if you were in a study or not, could you still receive
    a second stem transplant if you thought that would be
    best for Ronan.
    Just by reading your blog I know you would go to the
    ends of the earth to help Ronan kick cancer’s ass!

  7. shannah

    Hi! I dont know if you remember me but we met at Sloan on Dec. 23. We are from Miami and My daughter Bella has been fighting rhabdomyosarcoma. I just wanted to let you know you have all been in my prayers and will continue to be! Keep kicking cancer’s butt!

    God Bless,
    Shannah and family

  8. Sarah

    Hi,
    I have been reading your blog for quite awhile now, and praying for Ronan and your whole family. My Mom has been good friends with Kay Thompson for a long time, and Kay is my sister Allison’s God Mother. I think Ronan is one of the most adorable children I have ever seen, and I am so glad that he is such an incredible fighter. Although I don’t know you, your strength and your dedication not only to your children but to curing cancer really inspires me. I have a stong willed, big blue eyed 3 year old daughter as well as a 5 and 7 year old, and reading your blog has made me want to be a better Mom and to really appreciate what I have, and not take anything for granted. Thanks for being so open and honest in your blog, and I will continue to pray for Ronan and your family.
    Blessings-
    Sarah

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