I just want to be home

Am I staring in Bill Murry’s movie, “Groundhog Day?” That’s what the days feel like around here. I texted Woody today and said is it Thursday or Friday today? I had no clue what day it was. I ran home to shower and repack my bag, hit up the grocery store for Ro, then headed back to PCH. Today I’m depressed, tired, and sad. Hospital living at it’s finest. I just spent the past 30 minutes staring out the window at all of the cars on the freeway, wishing I was the one with somewhere to go, with not a care in the world. I had a mini breakdown this afternoon, tears and all. Thanks to my sweet Mrs. SangriaūüėČ for being on the other end of the phone for me and listening to me as I was a blubbering mess. I’m better now. But that as we know, can all change in an instant.

Ronan’s ANC is still not coming up. He looks great, but they are not letting us out of here until his counts start to rise. I’ve asked everybody. I told my friend Bethany tonight that I was about to throw Ro in a duffel bag and smuggle him out of here. She offered to be my get away driver;) That’s a true friend right there. So we just sit and wait. I asked why couldn’t we just go home and keep Ronan on lockdown there. I know the reason why, it’s obvious hospital policy and rules…. but wouldn’t he be safer at home without all the hospital germs floating around?? Makes sense to me, but I know these rules can’t be broken. So, I will sit and wait while listening as my 5 month old roommate, who has cancer, gets the spit suctioned out of his mouth because he can’t swallow on his own. I will sit and wait as this little baby has to be at the hospital all alone for days because his mom is at work. ¬†I will sit and listen to him cry and struggle to breathe and watch as the nurses try to take the place of his mom for the time being. I will sit and listen to Ronan cry that he just wants to go home because he misses his brothers so much. I will sit and wait and be patient and comforting to my son because that is what he deserves. I will sit and be thankful too. Thankful that I can be here with Ronan, thankful that I don’t have to work and leave my son alone. I have to find the silver lining in all of this somewhere. On the inside, I feel empty, tired, and numb. I want this all to go away; now.

Today was spent keeping Ronan busy and his mind off of being in the hospital. We sat in his bed and played Star Wars and watched movies. We broke out this adorable “finger ink” book that some mystery person dropped off the other day… as well as a bag full of other goodies. Still don’t know who this was but thank you again:) We sat and pressed our fingers on the ink pads and made silly pictures. Ronan then decided to dot my nose with a the color green. Well, that led to bigger and better things and before I knew it, I had inked his entire head and face ¬†all orange and made him look like a pumpkin. He inked my face purple and green. We were laughing the entire time and thankfully, the ink was really easy to wash off. Messy but very well worth it. Being in a hospital so much you have to get crazy sometimes. That was our crazy for the day; and we had a blast.

Short and sweet tonight because that’s all I can do. Hopefully tomorrow we will see a rise in Ro’s immune system counts. PLEASE. Love you all. Sweet dreams.

xoxo

Do you know if this hotel is pager friendly?? I’m not getting a sig’ on my beeper.

It’s days like today that make me really angry at cancer. I pretty much sat and held Ronan the entire day. We snuggled in bed and on the couch and watched movies. He won’t let me leave his side; not that I would want to. We watched “The Fantastic Mr. Fox,” and the ever so appropriate, ” The Hangover.” (hence the title of my post tonight) I seriously think that is one of the funniest movies ever and I don’t think I could ever get tired of it. Ronan laughed a lot during the movie in spite of his pain. I’m not censoring much these days from him, especially if it makes him laugh. He is feeling awful and has been fighting a low grade fever most of the day. I’m pretty sure he’s developing Mucositis, just like he did with Round 4 of his chemo. He’s telling me his throat hurts, he’s not talking much, he doesn’t want to eat. He’s in pain and just wants to be held. I’m pretty sure we will end up at the hospital if I can’t get his fever to go away. I am positive his ANC counts are at 0. That means no immune system at all. Poor baby. I would give anything to take his pain away.

Our Saturday should have been spent at the twins’ basketball game and at our dear friends son’s 2nd Birthday party. I was so sad to miss both of those things today but I am glad Woody was able to go and take the boys. As my Niki said tonight… next year we will all be together to celebrate her little one turning 3. Thanks my friend, for checking on me the entire day even though you were in the middle of your son’s birthday. You are so amazing to me. Woody and the boys’ had a blast and came home so tired. They are now all snuggled up in bed while I sit here and will stay up as long as I can to watch Ro and his fever. I spoke to the on call doctor tonight and she said as long as his temp does not go above 100.4; we don’t have to come in. Hoping we make it through the night.

I still hate the nights. The nights where if and when I fall asleep, my dreams are filled with such vivid nightmares that I toss and turn all night long. The nights where I no longer get to sleep with my husband because Ronan refuses to share our bed with anyone but me. My poor Woo… what kind of a man would allow a child to kick him out of his own bed? Only the kind of man who has a heart of gold and who would give up anything and everything for his son. I feel awful. I miss Woody and our precious time we used to have together staying up late and laughing at silly things that we would talk about at night or watch on T.V. while the boys’ slept. I feel like the rug has been pulled out from underneath me in so many ways. I’m tired and we still have such a long road ahead. Will this nightmare ever end???? Will I ever get my normal life back??? Everything is forever changed; and it better be with a very sweet outcome. All of our blood, sweat, and tears will save our baby. I swear to god on my life. Fucking cancer.

That is all for tonight. Going to try to unwind while watching my sweet lil’ man sleep. G’nite, sweet dreams my loves.

xoxo

Do you know if this hotel is pager friendly?? I’m not getting a sig’ on my beeper.

It’s days like today that make me really angry at cancer. I pretty much sat and held Ronan the entire day. We snuggled in bed and on the couch and watched movies. He won’t let me leave his side; not that I would want to. We watched “The Fantastic Mr. Fox,” and the ever so appropriate, ” The Hangover.” (hence the title of my post tonight) I seriously think that is one of the funniest movies ever and I don’t think I could ever get tired of it. Ronan laughed a lot during the movie in spite of his pain. I’m not censoring much these days from him, especially if it makes him laugh. He is feeling awful and has been fighting a low grade fever most of the day. I’m pretty sure he’s developing Mucositis, just like he did with Round 4 of his chemo. He’s telling me his throat hurts, he’s not talking much, he doesn’t want to eat. He’s in pain and just wants to be held. I’m pretty sure we will end up at the hospital if I can’t get his fever to go away. I am positive his ANC counts are at 0. That means no immune system at all. Poor baby. I would give anything to take his pain away.

Our Saturday should have been spent at the twins’ basketball game and at our dear friends son’s 2nd Birthday party. I was so sad to miss both of those things today but I am glad Woody was able to go and take the boys. As my Niki said tonight… next year we will all be together to celebrate her little one turning 3. Thanks my friend, for checking on me the entire day even though you were in the middle of your son’s birthday. You are so amazing to me. Woody and the boys’ had a blast and came home so tired. They are now all snuggled up in bed while I sit here and will stay up as long as I can to watch Ro and his fever. I spoke to the on call doctor tonight and she said as long as his temp does not go above 100.4; we don’t have to come in. Hoping we make it through the night.

I still hate the nights. The nights where if and when I fall asleep, my dreams are filled with such vivid nightmares that I toss and turn all night long. The nights where I no longer get to sleep with my husband because Ronan refuses to share our bed with anyone but me. My poor Woo… what kind of a man would allow a child to kick him out of his own bed? Only the kind of man who has a heart of gold and who would give up anything and everything for his son. I feel awful. I miss Woody and our precious time we used to have together staying up late and laughing at silly things that we would talk about at night or watch on T.V. while the boys’ slept. I feel like the rug has been pulled out from underneath me in so many ways. I’m tired and we still have such a long road ahead. Will this nightmare ever end???? Will I ever get my normal life back??? Everything is forever changed; and it better be with a very sweet outcome. All of our blood, sweat, and tears will save our baby. I swear to god on my life. Fucking cancer.

That is all for tonight. Going to try to unwind while watching my sweet lil’ man sleep. G’nite, sweet dreams my loves.

xoxo

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!!

Adios 2010… worst year of my life

I could
not be happier to see this year end. I told you what I was going to
say to 2010…. Adios Mother Fucker!!!! It started off great… and
I made some amazing friends whom have proved to me that they are
worthy of being in my life. For that, I will be forever grateful to
2010. But that is about the only good thing to come out of this
year. August 12, 2010 will forever be etched into my brain as the
absolute worst day of my life, and 2010 will forever be the worst
year of my life. I have never been so happy to put a year in the
past. 2011 is going to be Ronan’s year. His year of healing and
getting all better. We still have a long way to go to get him to
this point… but nothing will ever be as awful as having a doctor
tell you that your son has Stage 4 cancer. Things can only get
better from here. Bring on 2011! We cannot wait to see what it has
in store for us. Today, Liam, Quinn, Mimi, and Papa all returned to
PHX. It was a brutal day. I begged Woody to let the boys’ stay with
us and miss a few days of school. He wasn’t having it and I know it
really wasn’t a good idea due to what Ronan is about to go through;
but I am going to miss them so much. I cried all morning and was
bawling as we put them in the car to go to the airport. I had my
big sunglasses on so I don’t think they noticed. Well, Liam
didn’t.. Quinn of course did. Ronan didn’t really understand what
was going on, he just kept looking at me and saying, “But I’m going
to miss them so much.” I told him we would be home with them soon.
We spent the day spoiling Ronan rotten. We took him to our favorite
pizza place, right around the corner from the RMH and he ate a huge
lunch. We then came back here and played for most of the day. Ronan
and I curled up together and took a big nap. We were both tired.
Woody snuck out to go record shopping. As soon as he got back I
headed out for my dark Central Park run. It was a little scary
tonight… not a lot of people out. I only ran about 6 miles but it
felt good. Wasn’t too cold and it was fun to see all the people out
and about all dressed up going to their New Year’s parties. I tried
to think a lot about Monday and am trying my best to prepare for
what we are about to go through. I am trying to gather all of the
strength I have because I am going to need every ounce of it.
Tonight, Woody, Ronan and I had our own little party in our room. I
covered Ronan’s head in glitter and he put it all over my eyes and
face for me. I wore my silly feather headband and Ronan told me I
looked pretty. We ate cheese and crackers, Woody had his
beer and bought Sangria across the street for us as well. We
watched a Pearl Jam concert and Ronan was dancing and laughing the
entire night and has now decided he would like to be a rockstar
when he grows up. He is obsessed with Neil Young and “Rocking in
the Free World” is his favorite song. We did a lot of chasing him
around the RMH, going up and down the elevators. After we wore him
out, Woody and I put in “Easy A.” It was in my stocking from Woody
for Christmas. Love that movie;) Woody liked it too; it was the
first time he had seen it. He’s a tough sell too so I was
pleasantly surprised. Ronan is asleep, Woody is asleep, and I am
wishing I was asleep. Kind of want to stay up until Midnight, West
Coast time so I can make another New Year’s wish. No resolutions,
just wishes this year. I think you all know what I’ll be wishing
for. Cheers to 2011! I hope this year is filled with health,
happiness, and love. G’nite sweet angels. xoxo

Here’s to you, Wooddawg. 9 years later, baby.

Today, 9 years ago, I was married to my best friend, the
love of my life, my Woody. The only person who has ever truly had
my heart. It was the happiest day of my life; until today. Today is
the happiest day of my life in a different way; a bittersweet way.
Never in a million years did I think that 9 years after I married
my husband, that I would be crying tears of joy because my baby’s
bone marrow scan came back as clean. Yes, that’s right, you heard
me, CLEAN! When Ronan was diagnosed, his bone marrow was filled
with 5-7 percent of Neuroblastoma. Now, it has come back as gone.
What does this mean you ask? It means a lot of things. It means
that the chemo is working, it means that the Neuroblastoma is going
to be easier to get rid of, it means that Ronan truly is kicking
cancer’s ass, and it means that we are once again, filled with so
much hope for our baby of ours. He truly is a force to be reckoned
with. Nothing can stop this baby, not even something as evil as
cancer. This is the best news we could have received today; the
best anniversary gift I could have ever asked for. It is truly a
miracle and proof that all of our prayers, love, energy, and
whatever else is out there, is working in our favor. We met with
Dr. La Quaglia today. He was serious and to the point, but also as
soon as he walked into the room, I knew. I knew that we were in the
right place and I knew that there is nobody in the world that I
would trust with the life of my child. It was like he had a circle
of angels surrounding him. I took one look in his eyes and the
trust was formed instantly. He of course told us how serious the
surgery was; he had to make sure we were aware of the risks. This
was hard for me to hear; but I know legally, he has to tell us
these things. He said on a scale of 1 to 10, 10 being the worst,
Ronan’s Neuroblastoma surgery was about a 3. I asked him how long
he anticipated the surgery taking and he looked at me and said, “As
long as it takes to do a perfect job.” Done and done. I know this
man is a gift from god and the only person that should be operating
on my child. With that said…. PLEASEPLEASEPLEASE…. spend all
day Monday thinking and praying for Ronan. He will need it and we
will need it. I have never been more scared in my entire life. This
is a huge deal… he has to get through this. Just imagining my
baby going through this makes me sick to my stomach. But he is a
fighter and has proven that he can handle anything. He loves us all
too much to leave us.

Tonight, I am asking that you keep a little
girl in your prayers named Ashley. Her mom got in touch with me a
few months ago and her daughter, who is 7, was diagnosed about a
week after Ronan. Today, as Ro and I were trecking through the snow
to Sloan Kettering, I heard her mom yell out my name. I turned
around and there she was, Nicole, on her way to Sloan as well. She
introduced herself and said she has been following my blog for
quite some time now. Ashley, will have her surgery tomorrow, by Dr.
La Qualia. I know she is going to be fine, but as always, extra
prayers help. I will keep you posted and I will be thinking of her
all day. I saw Ashley today. She has the exact same sparkle and
strength in her eyes that Ronan has. She is going to be fine;
another beautiful survivor.

So, New York has completey healed my
love for running. It truly has become my therapy again. Last night,
I was crawling out of my skin, dying to run since it had been a day
since I had gotten to. I headed up to Central Park and ran about 6
miles on complete ice. It was dangerous, crazy, and completely
cathartic. Tonight, I did the same thing as well. Right now,
running is the only thing that is saving me. I don’t have my
therapist here…. and I so need to do a phone conference with her.
Running is my saving grace for the time being. I am going to come
back here and make the NYC marathon my bitch. Mark my words.
Today, I got to meet the new love of my life, Miss Macy:) She is somebody
that emailed me awhile back on my blog to say that she lived here
and if I needed anything to please call her. She is around my age,
and we have been keeping in touch for awhile now. Finally, I was
able to meet this little angel of ours. And what an angel she is.
She came through the RMH, all bundled up in her fur, toting gifts,
and as gorgeous as can be. Ronan and Quinn instantly fell in love
with her and I did too. She stayed for a couple of hours and we
entertained the boys the entire time. Ronan was flirting away, up
to all of his usual tricks. Macy could not have been more fun and
just what we needed to brighten our day. Thanks, Macy… as I said
before, I feel like I’ve known you forever. I can’t wait to
celebrate my birthday with you.

So, tonight, I sit alone at some
amazing pub by the RMH, paying bills and blogging away on my
anniversary. Sad but true. I would of course, rather have Woody
with me but he so sweetly understood that I needed to get out.
INDEPENDENCE…. ugh. it is so important to me. I need this time to
do my thing…. blog, pay bills, be out in the real world
surrounded by people laughing and who have no idea what the fuck
cancer really means in life. Everyone here is laughing, drinking,
playing trivia, and living life to the fullest. Just as they should
be. Hey, it wasn’t so long ago that I lived this carefree life. I
will never take it for granted again. I used to be exactly like
these people in this bar. And I will be someday again. Someday, I
will be back here, with my husband, just enjoying each other and
not obsessing about Ronan’s cancer. Love you all. Sweetest dreams.
xoxox

This is dedicated to Ronan… thanks Linds. Because baby, he
is our firework. Do you ever feel like a plastic bag, drifting
through the wind wanting to start again? Do you ever feel, feel so
paper thin like a house of cards, one blow from caving in? Do you
ever feel already buried deep? 6 feet under screams but no one
seems to hear a thing Do you know that there’s still a chance for
you ‘Cause there’s a spark in you You just gotta ignite, the light,
and let it shine Just own the night like the 4th of July ‘Cause
baby you’re a firework Come on, show ’em what you’re worth Make ’em
go “Oh, oh, oh” As you shoot across the sky-y-y Baby, you’re a
firework Come on, let your colors burst Make ’em go “Oh, oh, oh”
You’re gonna leave ’em falling down-own-own You don’t have to feel
like a waste of space You’re original, cannot be replaced If you
only knew what the future holds After a hurricane comes a rainbow
Maybe you’re reason why all the doors are closed So you could open
one that leads you to the perfect road Like a lightning bolt, your
heart will blow And when it’s time, you’ll know You just gotta
ignite, the light, and let it shine Just own the night like the 4th
of July ‘Cause baby you’re a firework Come on, show ’em what you’re
worth Make ’em go “Oh, oh, oh” As you shoot across the sky-y-y
Baby, you’re a firework Come on, let your colors burst Make ’em go
“Oh, Oh, Oh” You’re gonna leave ’em falling down-own-own Boom,
boom, boom Even brighter than the moon, moon, moon It’s always been
inside of you, you, you And now it’s time to let it
through-ough-ough ‘Cause baby you’re a firework Come on, show ’em
what you’re worth Make ’em go “Oh, Oh, Oh” As you shoot across the
sky-y-y Baby, you’re a firework Come on, let your colors burst Make
’em go “Oh, Oh, Oh” You’re gonna leave ’em falling down-own-own
Boom, boom, boom Even brighter than the moon, moon, moon Boom,
boom, boom Even brighter than the moon, moon, moon

Cheers to being finished with Ro’s Stem Cell Harvest!

We spent 12 hours at Sloan today. I took Ro over there this morning to finish up his stem cell harvest. We are finally finished and they got more than enough, thank the lord. I don’t think I could have handled one more day of him being hooked up and I know he couldn’t have. We did a stem cell collection at Phoenix Children’s and many of you have asked why we are doing another one here. We are basically doing it for “insurance.” IF Ronan’s Neuroblastoma comes back….. which we pray it doesn’t, Sloan believes by having his stem cells before a relapse will increase our chances of killing this god awful disease. If they were to try to harvest them after a relapse, they don’t think the stem cells will be as good. They will stay here at Sloan, frozen, and hopefully we will never need them. We are taking every precaution as parent; we have no choice.

It was a good day though. I had a visit from a friend that just happened to be in the city for the day; a friend who was my very best childhood friend and whom I have not seen or talked to really since I was 13. She was so sweet to come by the hospital to see me. It’s so funny how life works out; as soon as she walked in it was like, hello childhood! She looked exactly the same, except even more beautiful…. if that is even possible. I am so glad I got to see her and so hope to spend some more time with her when she comes back from her trip. Thanks, Jen for coming by. My friend from AZ, Danielle, or DD, is in NYC too! Yay for that! She is staying with her brother in the city for a few nights then heading to spend Christmas with her family. She came by the hospital and hung out with us for a few hours. Always love having her around. So, I had two nice treats today from two lovely ladies. I feel so lucky:)

We have nothing else too major going on tomorrow. Ronan will go to the clinic for platelets and then Thursday we have his CT scan done. So anxious and nervous all at the same time. Please pray extra hard for him…. hoping the tumor in his abdomen has shrunk even more after 3 more cycles of chemo. I will keep you updated as best as I can. We go in very early on Thursday morning.

I am taking a night off from my run tonight and all 3 boys are going to stay with Mimi and Papa. I am going to enjoy a night out with Woody and some friends. A night out together is very much needed. Ronan’s spirits have been great; he is such a little trooper. I am the luckiest mommy alive.

Enjoy the rest of your day<3 It’s the simplest things that are the sweetest!!

xoxo

My friend, Sandra, is one bad-ass MoFo <3

I’m dedicating my post to my new hero tonight, Sandra Foutz. I’ve talked about her little girl, Mia, several times on my blog. She is fighting brain cancer and I met her husband at PCH when he ran me down because he recognized Ronan from this blog. I’ve become good friends with Matt and Sandra; they are an amazing family. When this all happened to Ronan, I begged Woody to let me shave my head. I begged Liam and Quinn and ultimately I didn’t do it, because just talking about it to the twins upset them. I had to make the right call… they are 7 and are scared enough. They are just now starting to pick up on the whole being different thing and I guess a mommy with a shaved head was too much for them. I respected that, but my inner badass so wanted to do it. I did not; but Sandra did. Her husband, Matt just sent me a picture of her and I started bawling. She looks so beautiful and I can see the strength in her eyes. Sandra, you are amazing and Mia is so lucky to have you as her mom. I am going to keep this picture of you on my phone and look at it every time I am feeling weak and sorry for myself. You are my hero and I love you.

Ronan’s ANC counts jumped from 30 yesterday, to 200 today. That is great news and looks like we are getting out of here tomorrow. Keeping my fingers crossed… they want his ANC at 250 before we can leave and I am expecting that Ronan’s counts will be much higher tomorrow. I guess we were meant to be here this week. Ronan had another bloody nose and I spent from 7 this morning until about 10 a.m. pinching it. They transfused him again with platelets and that got it to stop. I ran home to shower and rest a little bit. Mimi stayed with Ronan for me. My friend, Niki, came and took me out into the world today to run errands. It was a good thing; I really needed her company. We ran into A.J.’s for a couple of things…. I about had a breakdown in there. I couldn’t focus on what I needed to get, felt like I was in a fog, and couldn’t think straight. I think I scared Niki…. it’s hard for her to watch me struggle. That’s how big her heart is. She was patient with me and helped me through it. We also ran to get pedicures together which was such a treat. I’m going to miss her so much when I’m gone:( I’m going to miss a lot of people. I’m looking at New York as though I am there to do a job. I know when we get there I will be o.k. I will be focused, determined, and strong. There is no time for being weak; it’s show time and it’s time to get this tumor out of my baby.

I am trying not to worry about our plane situation too much. I am leaving it in Woody’s hands and I have faith that things will fall into place. Woody is supposed to call Mr. W tomorrow to let him know we have the green light on being discharged, for sure. Praying that it all works out. I was having so much anxiety here tonight that I spent an hour and a half organizing our little room, disinfecting anything I could… even the floors, bed, and couch. You know you’re going crazy when doing things like that calms you. It is the only thing that gives me a feeling of control. I felt an instant sense of calm and relief when I was finished. Ronan sat and helped me and cleaned all of ¬†his Star Wars guys. Then he insisted on throwing them all across the room for me for 30 minutes and basically played fetch with me because he is all hooked up and cannot get them himself. The things we do as mom’s:) I was happy to do it for him though; anything to make the time pass by a little more quickly.¬†Ronan spent the rest of the ¬†night tonight up to all of his old tricks. Bouncing off the walls, causing trouble, being sassy… all which tells me he is feeling great. One of his favorite nurses, Arica, was here and he spent a lot of the night giggling and laughing with her. She is sooooo great with him and he adores her. I am going to miss the nurses here so much. They are angels and I have such respect for the job they do; it is such a hard one but they do it so well. We are going to miss our favorite male nurse too, Danny. Love him. He is really great with Ronan. We will be excited to get back to them in January.

I’m am going to try and cuddle up with my little bug; despite the loudness of our room tonight. Oh, what I wouldn’t give for a private room! G’nite to you all. Please keep us all in your thoughts and prayers so we can get this show on the road and get to NYC already! Hugs and kisses to you all.

P.S. A very Happy Birthday wish to my dearest, sweetest, dolly, LIZ!! Happy 21st my LOVE! I hope you had a beautiful birthday and can’t wait to spend time with you in NYC!!

And P.P.S. To my new NYC friend, Macy!! I can’t wait to meet you. Thanks for being so helpful and sweet, even though we are strangers! So glad you reached out to me on here and so glad to have a friend in New York. Love it even more that you are an Alumni Sundevil! Our friendship was so meant to be!

LIZ AND RO

Treasure each day, because you don’t know how many you’re going to be given

There was a reason we didn’t start chemo this week. It was because we needed to be together this Thanksgiving as a family. It truly was one of the best Thanksgivings I’ve had in my life. Woody and I started off the day by making a big breakfast for the boys’ and Uncle Ron came over to join us. I then headed out for a good 5 mile run. It was fabulous. The sun was shining, people were out and about, and it made me feel so happy. I came home, showered and got the boys’ ready to head over to the Kotalik’s for our Thanksgiving feast. Karen, of course outdid herself. The food was to die for and the company could not have been better. I am so lucky to call them family. We spent a lot of time outside playing football and basketball. Ronan was entertained by Karen’s youngest daughter, Olivia, who is such a doll with Ronan. She adores him and is so good to him. It was sweet to watch. I got to spend some time with Liz, who I call my soul sister. She is almost 21, and is a huge part of my heart. We sat and caught up for a long time. She will be coming to New York as well and is so excited. I am so lucky and blessed to have the Kotaliks… Mimi Kay has the best friends.

We took the time on our drive over today and each said what we were thankful for. I said I was thankful for this moment in time, for my boys and Woody, and our amazing support system.Woody said he was thankful for being together and how proud he is of Liam, Quinn, and Ronan who are growing up to be such amazing boys. Quinn was thankful for our family. Liam was thankful for Christmas to be the next holiday and for each other. Ronan was thankful for Star Wars:) So cute.

Liam and Quinn are in a Fantasy Football league this year and as of now, they are the number one team. If they win, they win 600 dollars. Craziness! Tonight, we were talking about what they would do with the money if they won and Quinn goes, “Maybe we could donate it to Ronan’s Foundation.” I wanted to melt on the floor right then and there. He is so thoughtful and kind. What a big thing for a 7-year-old to think of. It made me so proud of him.

I am thankful for so many things everyday. I still get sad about what we are going through; but we are getting through this one day at a time and counting our blessings. We finding so many little things that make our lives happy. I am trying my hardest to stay positive and I mostly get sad for Ronan, Liam, and Quinn. It’s hard to watch your babies worlds change at such a fast pace. You can’t ignore the pain in their eyes…. but we have a lot of talks about our feelings and I think that helps. I talked to Quinn tonight about what he is scared about. He said he was scared that he was going to get cancer too. I assured him that he will not, and neither will Liam. In the back of my mind, I was thinking, what do I know…. if it can happen to Ronan, it can happen to anyone. He felt better after I promised him he was not going to get it. I know he sits and thinks about these things and it’s my job to fish it out of him so we can talk about it. I feel like I’m doing a good job with that and so is Woody. I can’t do this alone. I thought for a long time that I could and it was easy to try to tackle everything by myself. But I missed my best friend too much. I need Woody and I need us to be a team. We are again; and things have gotten so much easier. I couldn’t ask for a better man to go through this with. Once again, I am beyond blessed.

I’ve been thinking all day about all the beautiful things in our life. The fact that we have 3 boys is a miracle in itself. Those 3 boys, are everything to us. I am thankful that after being with Wood for 11 years that he is still my best friend and the man I love. Some people never know that feeling. I am thankful that Woody still looks at me like the 21 year old girl he met 11 years ago. He still loves and adores me and treats me like I am his princess. I am thankful that we are still each others true loves. I am so thankful for Woody’s parents and I don’t know how we would manage going through this without them. I am thankful for all of my family. There is not a day that goes by that I don’t miss them. I am thankful for all of my friends. They are the truest and purest souls put on this planet. They would not be in my life if they were not. I know for a fact, that I would not be able to get through this without them. I am thankful for the pure kindness of strangers. I had no idea how beautiful people can really be…. without having agendas. I am thankful for everyday that I get to look into Ronan’s beautiful blue eyes and how he loves to kiss the spot on the back of my neck and I do the same to him. We call it our sugar spot. I love it when he lets me give him “sugar.” The days that he smiles and is happy mean everything to me. His good days make all the bad days go away. I never knew I could love so deeply in my life. I am so full of love for my family that I feel like I could burst.

It is our love that is going to get us through this. This little boy is not going anywhere. When I was running the other night I looked up at the sky and prayed and prayed for Ronan to beat this. He belongs with us forever.

P.S. To my Liz Kotalik. I love you like a sister. I am so proud of you and the amazing woman you have become. Soul sisters forever and ever. My heart belongs to you.

Have I mentioned how much I love music? It feeds my soul. Cheers to The Pretenders tonight. Love you all. Sweet dreams and all the blessings in the world.

Oh, why you look so sad?
Tears are in your eyes
Come on and come to me now
Don’t be ashamed to cry
Let me see you through
‘Cause I’ve seen the dark side too

When the night falls on you
You don’t know what to do
Nothin’ you confess, could make me love you less

I’ll stand by you, I’ll stand by you
Won’t let nobody hurt you
I’ll stand by you

So, if you’re mad, get mad
Don’t hold it all inside
Come on and talk to me now

Hey, what you got to hide?
I get angry too
Well I’m a lot like you

When you’re standing at the crossroads
And don’t know which path to choose
Let me come along
‘Cause even if you’re wrong

I’ll stand by you, I’ll stand by you
Won’t let nobody hurt you
I’ll stand by you

Take me in, into your darkest hour
And I’ll never desert you
I’ll stand by you

And when, when the night falls on you, baby
You’re feelin’ all alone
You won’t be on your own

I’ll stand by you, I’ll stand by you
Won’t let nobody hurt you
I’ll stand by you
Take me in, into your darkest hour
And I’ll never desert you

I’ll stand by you, I’ll stand by you
Won’t let nobody hurt you
I’ll stand by you
Yeah

Won’t let nobody hurt you
I’ll stand by you
I’ll stand by you
Won’t let nobody hurt you

I’ll stand by you
No, no, no, no, no
Take me in, into your darkest hour
And I’ll never desert you
I’ll stand by you
I’ll stand by you

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.