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!!

Hospital Reality sucks

We moved out of the POU (Pedatric Oncology Unit) today and into a different area of the 9th floor. I wish we could have stayed in the POU, but moving to this room is a step up as far as getting us out of here. The POU only has 3 rooms and they are so private that you never see what is going on with the other patients there. The room we are in now, is just like the 2nd floor at PCH. Except worse in a way, because the kids seem so much sicker. I cannot even tell you what I have seen on this floor today, but it is something a mother should never have to see or experience. Let’s just say, it left me in tears most of the day. One room in particular is covered in signs about heaven and God and through the window I saw a mommy feeding her baby ice chips, scooping them into her mouth. The doors here are covered in posters that say things like, “Be strong, Be positive, Be brave.” I have had that empty pit in my stomach the entire day again and it is once again thoughts are filling my head like I can’t believe my baby is in the cancer club now. I have been so positive and upbeat lately… this has kind of thrown me for a loop. On top of it all, Woody left today and I guess I need him around more than my independent self thinks. I was so spoiled by having him here with me the entire time. He gives me so much strength and we are such a great team. We have a roommate too. I think the little girl is about 11 and has bone cancer. That’s what I’ve picked up on so far. There hasn’t been a lot of time for chit chat. Ronan spent the day walking around some more. Still trying to do everything himself. He is so sweet. Everything is always, “Please help me.” or “Please hold my hand.” or “Please get me a drink.” He says please before asking me to do anything in his squeaky little voice. He is hurting so badly but is too proud to tell me.

I met a new friend today named Ed. He is somebody that my friend, Niki, reached out to after hearing his story about his son, Jack, and his battle with Neuroblastoma. Jack fought long and hard, but passed away at age 5. It was hard meeting Ed today, the pain in his eyes was undeniable. From the second I saw him though, I felt as if I had known him forever. He sat with me for about 2 hours and we talked about everything. It was comforting to me and hard at the same time. He said it was therapeutic for him which I was surprised to hear him say, but it says a lot about the type of man he is. He left me with a big bear hug and I had tears in my eyes. Today was a very special day and I feel privileged to have learned about his journey. He has been through hell and back and is still standing; with a smile and a laugh that will melt your heart.

Tonight, is the first night that I am really homesick. I guess it’s true…. my home is wherever Woody is, because I know that is why I am feeling this way. Also, I really miss the twins. My heart ached when I talked to them on the phone tonight. I hate being away from them. We are almost done with New York though… I am going to make the most of these next couple of weeks. So glad Tricia gets here tomorrow. That is going to make me a lot less homesick.

Ronan is doing well and Dr. Angel (La Quaglia) came to visit. Ronan gave him a big smile the entire time he was here. It’s like the two of them share a secret now… they have a special bond. My friend Pam’s husband, Larry, told me that Dr. La Quaglia walks on water to them. I couldn’t agree more.

My Xanex, that I NEVER take, is starting to kick in. Thank god. I was feeling like I was going to jump out of my own skin all day today. I need a night of sleep without nightmares. My dreams are so vivid anymore. The night before Ronan’s surgery, I had a dream all about it. Everything turned out perfectly, Ronan was fine, and then Woody had to share the news with me that he had an inoperable brain tumor. WTF is that all about?? My baby was saved, but my husband was now dying. I remember everything about that dream so vividly, down to every single person that was in it. I woke up thinking it was real. I’ve never had dreams like this in my life. They are so real, it is scary. Sleep is hard now because I wake up so often, because of a nightmare or because of worrying. Hopefully there will come a time when it will once again be peaceful for me again. WIth that said, head hitting the pillow, asap. G’nite, sleep tight, love to you all.

xoxo

Baby’s incision 🙁

Blowing kisses to the heavens above

Today, was a great day. Woody worked for a few hours and I took care of Ronan. We spent the day getting him to do normal things like walk around, pee, and drink. He is in a lot of pain; even though he won’t really tell us. He has such a high pain tolerance, but I can tell by the look in his eyes that he is hurting. We are working on getting his lungs to function as well as they are supposed to be. This means he is doing treatments like blowing bubbles and blowing into a little machine for us. He is wiped out from today and his demeanor has been very serious and business like. He knows he has a job to do.

After Woody was finished working, he came back to Sloan. Dr. Kusher stopped by for a visit and I have totally fallen in love with that man. (Not really, but you get what I am saying) First of all, to say the man is a genius is an understatment. Not only is he brilliant, caring, funny, and nice… he also really cares about his patients their parents. He stood and talked with Woody for a good 30 minutes about Ronan and he is elated at the way he is responding to treatment. He told us that Sloan is always an open door to us should we choose to come back her for radiation or whatever else. I talked to him a little bit about running. He runs in Central Park every morning. A.M.A.Z.I.N.G. Woody asked questions and Dr. Kusher gave him an answer to everything. He also said we could take Ronan home this weekend since he is doing so well and do Round 6 of chemo at PCH. We have decided to just stay here and finish it. I want to make sure Ronan is totally healed before heading back to AZ and taking him home on Saturday, just to check him in to PCH for Round 6 just does not make much sense. We may as well just stay here and get it over with so that way, when Ronan can go home, he can actually stay home for awhile.

After Dr. Kusher left, I ran out to go back to RMH. I put on my running clothes and ran to Central Park in the dark (sorry Marisa… stop with the panic attacks;) I got in about 8 miles. Tonight, while I was running I felt like such a weight had been lifted off of my shoulders. I looked up at the sky, said thank you and blew kisses to the heavens above. It was the most gorgeous run. To be in the middle of a park, surrounded by beautiful buildings and lights in the distance; and for such a busy city, my run was so quiet and peaceful. It was heaven on earth tonight. I am going to miss New York so much. This city has been such a positive experience for all of us; I feel like a new person and I know Ronan does as well.

After I ran I went back to RMH, showered and packed my bag for the night. Ro is asleep and Woo is playing on his laptop. I am going to snuggle up to my hubby now and watch a movie. What a perfect way to end this perfect day.

Ronan’s Day Out

The stats helper
monkeys at WordPress.com mulled over how this blog did in 2010, and
here’s a high level summary of its overall blog health:

Healthy blog!

The
Blog-Health-o-Meter™ reads
Wow.

Crunchy numbers

Featured image

The Louvre Museum has 8.5 million visitors
per year. This blog was viewed about
150,000 times in 2010. If it were an
exhibit at The Louvre Museum, it would take 6 days for that many
people to see it.

In 2010, there were
178 new posts, not bad for the first
year! There were 247 pictures
uploaded, taking up a total of 216mb. That’s about 5 pictures per
week.

The busiest day of the year was August
17th with 3,642 views. The most
popular post that day was My
first true love
.

Where did
they come from?

The top referring sites in 2010
were facebook.com,
twitter.com,
mail.yahoo.com,
mail.live.com, and
Google Reader.

Some
visitors came searching, mostly for rockstar
ronan
,
www.rockstarronan.com,
rockstarronan.com,
rockstarronan, and ronan
thompson
.

Attractions
in 2010

These are the posts and pages that got
the most views in 2010.

1

My
first true love
August
2010

16 comments and 1 Like on WordPress.com,

2

RonanBaby
August
2010

79 comments

3

The
Ronan Thompson Foundation
September
2010

1 comment

4

The
Journey Begins . . .
August
2010

52 comments and 1 Like on WordPress.com,

5

Sick.Mad.Angry.Scared.
This effing sucks.
September
2010

18 comments

Ronan’s Day Out

Today was a blur! Ronan
and I headed out around 1:00. Our first stop was Dylan’s Candy
Shop. He was in heaven! I let him pick out all of his goodies and
then we headed out to hit the city. We walked for about 5 hours and
ended up meeting up with Woody. To say that the city was busy is an
understatement. This city is still packed full of people. Ronan was
such a trooper and we had such fun exploring the city. I feel like
I know it like the back of my hand now. We got back to the RMH
around 6 and then I headed out for my run. I ran for about an hour
and a half, in Central Park and it was glorious. People everywhere,
I had my headphones blaring and every chunk of snow that came my
way, I kicked it as hard as I could and imagined it was Ronan’s
tumor I was stepping on and killing. I must have done this about 50
times tonight… it felt so good. After my run, I came back here
and fixed Ronan dinner. He ate so much and has gained so much
weight. He is back to being my chubby little monkey. Well, not
really chubby, but he is back to his normal weight. The nurses at
PCH would be so proud. He weighs more than he has since we started
this whole thing. It must be all the pizza;) He seems to be doing
fine without Liam and Quinn which is great. I was really worried he
was going to go into some deep depression without them. Woody and I
have really been enjoying spending some one on one time with him.
He has been keeping us very busy. Right now, he is on the ground
doing his push-ups. He cracks me up like not other! His energy is
never ending; and I am so enjoying him and how great he is feeling.
I’m soaking it all up while I can because I know these next couple of
weeks are going to be hard. That’s all for tonight; we are beat
around here. Sweetest dreams to you all. xoxo I took this picture
on my run tonight. Oh, how I love this city.

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

Ronan’s Day Out

Thanks DD, for the lyrics to this. It is a perfect song for
our Anniversary. Woody and I will do an Anniversary redo… I
promised my friend, Macy this tonight. Maybe after Ronan’s surgery,
after things have calmed down a bit. We owe each other that time to
celebrate. Love you, Woo. Who by the way, now reads my blog,
supports my blog, and loves my blog. What more could I ask for?? I
am so thankful for a supportive husband… it took him awhile to
come around to this blogging business. I am so glad he did… he loves me that much. I am the
luckiest girl alive. xoxo Dave Matthews Wanna pack your bags,
Something small Take what you need and we disappear Without a trace
we’ll be gone, gone The moon and the stars can follow the car and
then when we get to the ocean We gonna take a boat to the end of
the world All the way to the end of the world Oh, and when the kids
are old enough We gonna teach them to fly You and me together, we
could do anything, Baby You and me together yes, yes You and I,
we’re not tied to the ground Not falling but rising like rolling
around Eyes closed above the rooftops Eyes closed, we’re gonna spin
through the stars Our arms wide as the sky We gonna ride the blue
all the way to the end of the world To the end of the world Oh, and
when the kids are old enough We gonna teach them to fly You and me
together, we could do anything, Baby You and me together yes, yes
We can always look back at what we did All these memories of you
and me baby But right now it’s you and me forever girl And you know
we could do better than anything that we did You know that you and
me, we could do anything You and me together, we could do anything,
Baby You and me together yeah, yeah To of us together, we could do
anything, baby You and me together yeah, yeah To of us together
yeah, yeah To of us together, we could do anything, baby ?? to
reach the end of the world

Sushi, Sake, and Cancer

I’m having a ton of anxiety again. Not sure why, it just seems to come and go in waves. I have not been able to run in 2 days… maybe that is why. Running seems to help me get rid of some of this nervous energy. May take a trip to the gym later…  I am really missing my Central Park but it is covered in about 10 inches of snow. Woody has been working today, I have been taking care of Quinn and Ronan while Liam has been hanging out with Woody and then met us down in the playroom. I took Quinn and Ro to eat at the pizza place nearby. Have I mentioned how much Ronan has been eating?? It is insane. I think he eats more than our family, put together. Here is an example of the lunch we just had. Me: Bowl of Tortellini soup. Quinn: 1 slice of pizza and some Fetuccine pasta. Ronan: 3 slices of pizza (they are huge) bread knots, and half of Quinn’s Fettuccine. Not to mention he had just eaten an hour before. I swear he is eating every hour on the hour. It is so great for him; he dropped a little weight during our last round of chemo. I bet you he has put it all back on and then some. Pizza seems to be his favorite as he is eating it at least 3 times a day.

I am trying to let Liam, Quinn, and Ronan soak up as much time together as possible before the twins have to leave. I know Ronan is going to be devastated when they go back to Arizona. Just the thought of it makes me tear up. I hate that they have to be a part, but I also know it is going to be easier on me. It takes a lot to entertain 3 little boys’ who are away from home. Liam and Quinn have been such troopers though; we have been dealing with a little bit of behavioral issues which has thrown me for a loop. It’s mainly my Quinn. I know where it is coming from. He is nervous, scared, and is trying to adapt to our new life but having me gone a lot of the time is hard on him. He is becoming more independent though. I notice little things that I see him doing on his own that he used to not be able to do. I sit back and watch him and wonder, when did he learn how to do that?? Wasn’t I supposed to be there to see it??  I’m trying to do my best to address the things going on with Quinn; we have been doing a lot of talking.

I’ve been emotional the past few days. Being away from our own home is hard…. we are basically in a little studio apartment. Lots of “stuff” in here which is about to throw me over the edge. This whole blizzard thing has left us pretty much inside the RMH all day. About to lose it. It’s a funny thing how whenever I seem to be at my breaking point, my friend Charisma calls me. It’s like she can sense it. She called today and we had a good chat for about a half an hour. She does that type of thing often…. when I am feeling overwhelmed or sad, ring ring, and it is always her. It was good to hear her voice today and I always feel better after our talks. Love you, CC.

That was from earlier today. Guess what time it is?!?! 2:30 a.m. which is what I call the witching hour around here. I wake up at this time every night like clockwork. I just woke up from a very vivid dream which involved Ronan and his cancer. Cancer never fucking sleeps around here; I swear I never get a break from it. Tonight, I was able to get out a bit. I took all 3 boys’ over to Kay and Charlie’s place and then I went and walked the city for a bit. It was a mess but I really needed the walk and alone time. Woody was on the phone with clients and ended up meeting me for some sushi and sake. We sat, I tried to eat a little bit, and we talked. I was in a funk today and he knew it. We talked a lot about Ronan…. at one point I looked over at him and said, “Did you ever think in a million years we would be here?” He of course said no. I told him how I always pictured our life and it was either something happening to me or him that I imagined dealing with. Never was it one of our kids. We had a nice time together but no matter what we do, it’s like a big black cancer cloud is hanging over our heads. Fun times I tell ya. We then walked back and picked up Quinn and Ronan. Liam stayed the night with Mimi and Papa. On our walk back, Quinn was telling me how much he loves New York and wants to go to Columbia University to be a doctor. It was something so little, but it made my night. He told me that this is his favorite city ever…. he is such his mama’s boy:) Ronan would not sit in his stroller and was running through the snowy city, and was laughing and laughing. It was such a perfect moment. We got back to the RMH and everyone was pretty tired since it was so late. The boys’ and I crashed out and Woody stayed up dealing with some airline issues. He needs to get back to Phoenix and we are trying to figure out his travel dates for everything now that it all got screwed up due to the snow. He was supposed to go back on Sunday; but obviously that didn’t happen.

On Wednesday, we should have all of Ronan’s scan results back. We also meet with Dr. La Qualia which I am super excited about. I talked to my friend, Pam White tonight and I think she is more excited than I am for me to meet La Qualia. He saved her daughter’s life. She gave me a picture to give to him of her daughter; she keeps him updated on her by sending him pictures of her beautiful little girl. I can’t wait to give it to him.

That is all for now. 3:30 a.m…. have to try to get back to sleep so I’m not a zombie tomorrow. Love you all. Hope you are having the sweetest dreams.

xoxo

Christmas 2010

This  post was from last night. We have been having Wifi problems at the RMH. That’s why there have been lack of updates. I’ve missed you all and hope you had a great night last night. We had a beautiful time together and now the city is covered in a blanket of snow. Below is what I wrote last night. Love to you all.

Silent Night…. Holy Night…. All is calm… All is bright….

This is the lullaby that I have hummed to Ronan since he was born. I’m not sure why, but I hum or sing it to him every night before he goes to sleep. Since he was diagnosed, I’ve stopped singing it to him. I’ve taken the most beautiful song, and turned it into something crazy in my head, telling myself that I don’t want it to ever be a silent night because that means my baby will be up in heaven and not with us anymore. I’ve only told a few people about this… Tricia, Marisa, and Charisma. Charisma is the one who told me she understood, but really thinks the song is not about what I have turned it into. It has always been my favorite Christmas song; until now. What we are going through is so scary to me that I have taken one of the most beautiful things and turned it into something ugly and sad. Sometimes I feel as I don’t have control of the feelings and thoughts I have. How can I?? My baby has cancer; nothing will ever be the same.

We had a great Christmas morning. We stayed in our room, opened up gifts, and the boys could not have been happier. We were all together as a family and it was such a beautiful thing. As they were busy playing with their toys, I bundled up and braved the 29 degree temperature and headed out for my Central Park run. I ended up running 10 miles and it was beautiful, brisk, hard, and just what I needed. Before I came on this trip, I was telling a good friend of mine how I came here to run the NYC Marathon a couple of years ago and how I would never do another one again because it was so hard. He looked at me with a sparkle in his eye and goes, “Oh, you’ll do another one…. Just you wait and see.” As I was on about mile 7 tonight, I thought to myself… I am so coming back here when Ronan is all better to do this marathon again. I imagined Ronan waiting for me at the finish line, so proud of his mommy. I will run it for him, and for NYC. This is the city that is going to heal my baby and is healing his mommy as well. There is no place I’d rather be right now. Funny how this city feels like such a second home to me already. That is because it is full of all things magical, miracles, and it is all about taking that tumor out of Ronan. January 3rd cannot get here soon enough.

Tonight was bittersweet. I have been doing o.k. here at the RMH, but tonight my emotions got the best of me while we were doing the whole Santa thing with the boys and all of the other families here. They do such a beautiful job and are so generous with the gifts. I was standing up next to Woody and the boys, just kind of soaking it all in. Then the tears started and I couldn’t get them to stop. It was all too much. The room was full of the most beautiful kids, who are fighting so hard for their lives, but are still so happy. Then there were my 3 babies sitting there together; like it was just another Christmas. Woody pulled me down next to him and let me cry on his shoulder and tried to comfort me by whispering to me how lucky we are to all be together and that’s all that matters. He keeps telling me that together, we can get through anything. Team Thompson, as he likes to call us. He is such a good man. After awhile, the tears stopped but after the boys’ got their gifts I took Ronan up to his room. For one, he wanted to go, but two, I felt an anxiety attack coming on. Still not doing well in big social situations I guess.

I am fighting everyday to be brave and strong. Sometimes, this all still becomes too much. This will never become easy for me, everyday is a struggle. Imagine living everyday of your new life full of hurt, and watching everyone around you hurt as well. It is so hard, so unfair, but I know I just have to keep moving forward. I’m very thankful to be married to such a strong man. I would fall to pieces every second of the day if it were not for him.

That’s all for tonight. Time to cuddle up to my little boo and kiss that sweet, bald head of his for the millionth time today. He is our Christmas miracle, and he is the sweetest Christmas gift I have ever received. He is teaching us so many lessons along the way.

Love you all. Hope your holidays were so very, very blessed.

xoxo