The worst of times are the best of times

Last night my very sweet friend, Ed, hooked our family up with 5 tickets to the New York Knicks game and floor passes. It was our intention to take Ronan, but with him inpatient at Sloan, there was no chance of that happening. Mimi and Papa offered to come and sit with Ronan so Liam, Quinn, Woody and I could all go to the game. I felt a little guilty leaving Ronan behind, but I knew how important it was for Liam and Quinn to spend some time with us. The four of us hopped on the Subway and headed downtown to the game. On our walk there, I caught myself getting really upset about not having Ronan healthy and happy and with us. It seemed so weird it just being the four of us. That was not how our family was meant to be. Woody could tell I was getting upset as I was being really quiet as I tend to do when something is bothering me. He kept looking back and asking if I was o.k. I put on my best face and told him I was. I gave myself a little pep talk about how important this was to Liam and Quinn and how I needed to try to enjoy the night as much as possible.

Once we arrived to the game, someone met us and we were taken down on the floor to watch the Knicks warm up. It was beyond awesome. We sat for a good hour and watched the teams practice and then went up to the suite where we were sitting. Before I knew it, I was having the best time. Quinn and Liam were so into the game and it was a great second half. It went into over time and the Knicks ended up winning. To my friend, Ed, who set this all up…. thank you from the bottom of my heart. You have no idea how much the 4 of us needed this time together as a family. It has been a long time since we have done something like that together. It was a great few hours of enjoying each other and something we will never forget. You have created diehard Knicks fans in both myself and Quinn.

Woody slept at the hospital last night and I stayed at RMH with Quinn. Liam went back and stayed with Mimi and Papa. The 3 of them left this afternoon back to Phoenix. Sad to see them go as we will miss them very much. Quinn is still here and has been hanging out with Woody all day while he works. I hate that he cannot be at the hospital with us and I am hoping Ronan will be discharged this week. Dr. Kushner came to see us this afternoon and was very pleased with how well Ronan is moving around. He is using his little arm more and more so that is a very good sign. We talked about the “plan” and as of now we are planning on doing scans again around April 11th. Depending on what they show, we may do another round of this chemo or go on to the NK-Cell trial. The most important thing that matters to me right now is keeping Ronan out of pain. It seems as if the radiation and chemo are doing the trick as far as keeping that under control. I find myself being able to breathe a little easier everyday as his pain becomes less and less.

This week we are focusing on getting Ronan out of here (come on ANC counts!) and spending time with Quinn. He played in the playroom of the RMH house all day while Woody worked. They had some volunteers doing mad science stuff and he had a blast. I am going to be so sad when he leaves to go back to Phoenix with Woody. A part of me really wants him to just stay here. I can’t wait for school to be out so we can have both of the boys’ coming out here more often and for a longer amount of time. It is so good for Ronan’s spirits. He completely lights up when they are around.

I am sleeping at the hospital tonight and Woody and Quinn are off at some movie. Ronan has been playing away with his Star Wars guys and I finally got him to eat tonight. Victory! He ate an entire Peanut Butter and Jelly sandwich and some Mandarin Oranges. His little appetite has been poor for a good week now. I can tell he is feeling better than he has in a while tonight due to the giggles and feistiness he has been displaying. I called him feisty tonight and he looked at me and goes, “Stop calling me spicy! I’m not spicy!” His little voice cracks me up. I spent the rest of tonight telling him stories and singing him songs. We talked a lot about all the people who are going to visit him in New York. I named off everyone under the sun and he kept saying, “Who else, mom?” I love my little conversations with my almost 4-year-old. I love you to the moon and back my little man!!!! That boy will never understand how much happiness he brings me with something as simple as his smile. It’s the most beautiful thing in the world.

My mom is taking the Red-Eye here on Sunday because Woody and Quinn are leaving. I know I am going to be a mess when Wood leaves. He is my rock and I already miss him. I love having him here with us so much. I mentioned before that we do really well in this city together. Not sure why, but we do. Maybe it’s because we are fully focused on Ronan together, without having many distractions. Makes me feel like we can do anything together… including getting our son well. My mom will stay until Friday….. I think. Tricia is also flying in next Wednesday-Sunday. Can’t wait for them both to be here with me. Ronan is very excited as well. My mom has never been to New York so I am hoping to get her and Tricia tickets to a Broadway show so she can experience something New York. I know the only thing she cares about is spending time with us, but I would like to let her enjoy New York and what it’s all about, even if it’s just for a few hours.

That is the update for tonight. I’m a little homesick but trying not to think about all the things I miss in Phoenix. It’s not things… it’s once again just my old life that I crave and yearn for. The only thing that is of importance which is being at home with Woody and my 3 healthy boys. I want that so badly that I can taste it. That’s why I have to keep pushing forward through all of this; so I can get us back there someday. For good. I can see it, I just can’t touch it yet….but I know it’s there just waiting for us. I will never give up on this baby boy of ours and he is never going to give up on me. He promised me tonight that he will stay with me forever. I refuse to let him break that promise to me. I will hold him to that until the day I die.

Miss you all very much. Thank you to everyone who has been checking in on us and all of your offers to help. If any of you that are reading this and are in New York and you want to help us out in any way, I thought of an amazing way to do so. You can donate blood or platelets to Ronan. All the information is down below and it would mean so much to us. And to all of you who aren’t in New York but wherever else you live, if you get the chance, please donate. These two things have saved my son’s life countless times. It is pretty easy to do, fast, and painless. Every time Ronan gets a bag of blood or platelets, I kiss the bag as I like to think I’m kissing the person who donated it. What an amazing thing to be able to do in this day and age and it helps so many people. Think of Ronan when you are doing it and think of all the other lives you are saving. Such a selfless act, and so simple and easy.

Sweetest dreams to all of my lovelies out there. Thank you for your outpouring support and love. Hugs and Kisses from NYC. G’nite!

xoxoxo

pastedGraphic.pdf RONAN THOMPSON Needs Blood & Platelets

Ronan is currently a patient at Memorial Sloan-Kettering Cancer Center in New York City. His treatment for Neuroblastoma requires regular blood and platelet transfusions.

Ronan would deeply appreciate your donation of blood and/or platelets and requests you ask others you know to donate. Donations not used by Ronan will be released for use by other patients many of whom are children.

To benefit Ronan Thompson all designated donations must be made in the Blood Donor Room of Memorial Sloan-Kettering Cancer Center

Please visit www.mskcc.org/blooddonations for complete information about donor eligibility and the donation process for blood or platelets.

For answers to questions and to schedule an appointment that is convenient for you please Contact:

Joe Licata – 212-639-8177

Manager, Blood Donor Program

licataj@mskcc.org

Blood Donor Room – 212-639-7648

1250 First Avenue (between 67th/68th Streets) NYC – Schwartz Building lobby

Open Every Day

Fri Sat Sun Mon 8:30am – 3:00pm

Tues Wed Th 8:30am – 7:00pm

The process for donating whole blood takes approximately1hour

The process for donating platelets takes about 2 ½ hours.

Appointments are necessary- All blood types are acceptable

FREE Donor Parking –

-Somerset Parking Garage, 1365 York Avenue –entrance on NW corner of 72nd Street

I’m throwing in the towel and taking a bubble bath with a Margarita. Enough is enough today.

You do not want to be in my head tonight. It is not a fun place to be. It’s filled with anger, guilt, and sadness. Tonight, I am tired. Just plain tired of all of this cancer bullshit. It has taken over my entire life and I feel so selfish for thinking this but I caught myself screaming in my head tonight that I need a break. I want to check myself into a hotel, go to the spa, watch a movie, and be by myself with nobody around to talk to or take care of. Everyday, I am taking care of my sick baby without thinking twice about it. It is just routine, what I have to do, which I am so lucky to do. Today was the first day since all of this happened that I finally felt like checking out. Now, the guilt comes washing over me as I think to myself, what an awful mom you are… you are so lucky he is here and you are able to be the one to take care of him. All he wanted tonight was something to eat before bed, even though he had just eaten an hour prior. I was am so tired and could not even muster up the energy to get up to fix him something. Quinn was in bed with me trying to read me his book and I was so trying to pay attention to tell him how well he was doing, and there was Ro, standing at the end of my bed, screaming for my attention. I raised my voice at him which I never do anymore, and he started to cry. That in turn made me cry, then Quinn started to cry. So dysfunctional, so unfair, so totally FUCKED. It was then that I caught myself thinking, please just let me disappear, please I don’t want to do this anymore, please just everyone leave me alone. Woody then swooped in and took care of the situation. He got Ronan something to eat, took Quinn to bed and played him guitar, and then came and drew me a bath and gave me a massage while we waited for the water to fill. I calmed down and now I sit drinking the margarita I made him pour me. Um yeah. You know it’s bad when it’s 9:30 at night and I need a cocktail. Not a big cocktail girl around here, but tonight bubbles and a margarita seem to be the answer. I need sleep but as always, my mind refuses to be still. So now what? This is not going away anytime soon so I will pick myself back up and start a new day tomorrow. I feel like the worst wife and mom in the world right now because I just want to lock myself in a dark closet and never come out. Not really… but I am so tired of everything and we are not even to the hard part yet. Plus, how do I even have a right to be tired after all that Ronan is going through. I need someone to slap me hard now and tell me to knock this pity party off. I don’t have a right to be tired because look at him; the little boy sleeping next to me. I am so lucky he is here and he is not tired as he is not giving up this fight. Just looking at him reminds me that I don’t have a choice; I have to be strong. But I still can be sad for all he is going through. I don’t even have the words tonight to tell you how sad I am for this baby of mine. This reality of ours is an absolute nightmare, but you know what?? Ronan still has a smile on his face and laughter in his heart. How’s that for bittersweet??

Today, oh what a day! We went to the clinic for Ronan’s “Psychological Evaluation.” I explained to him before we got there what exactly we were doing and I told him if he would just corporate, we would be able to get out of there must faster to go home. He told me he would and I somewhat believed him; but not really. I know my little guy. Once we got settled in Dr. Jan’s office, I sat in a chair next to Ronan to fill out some paperwork and Ronan sat across Dr. Jan in his little chair. She started off by pulling out her big book full of pictures and questions. Things like, “Here is a picture of 4 apple trees; which one has the most apples?” Ronan would look at the book and point to the answer he thought was right. He was doing fine, up until about 15 minutes into the test. She asked him a question and he wasn’t 100% sure of the answer and he had a complete meltdown. I’m talking a meltdown so bad that he was crying, sweating, and refused to talk anymore. I sat him on my lap and tried to talk him through everything while comforting him. I explained how if he didn’t know the answer, he could just guess; the important thing was that he was trying. He refused, said everything was taking too long, and he wasn’t going to talk anymore. This went on for a good 25 minutes. I told him this test was something we HAD to do and if he didn’t finish, we would have to come back next week. He didn’t want to do that, so he started answering the questions again. He ended up having another meltdown and at this point Dr. Jan looked at me and said, “What do you want to d0? We have another hour left?” I told her we would just push though this and get it done. I knew Ronan was capable of doing this, he was just manipulating the situation because he did not want to be there. Who can blame him? I told Ronan that I was going to leave the room if he didn’t start coorporating. It was like a switch flipped and *BAM*! The next thing I knew he was pointing to all the right answers and answering the questions. So, the first hour of the test was exhausting to say the least. The next half an hour was a breeze due to Ronan finally giving in and just getting it done. Dr. Jan was blown away by how much Ronan knew  and how smart our little guy is. I already knew this… he is way too smart for his own good. I won’t get the “official” report until next week, whatever that means. I already know everything I need to know… Ronan’s IQ is off the charts. Blame it on his Daddy;) Dr. Jan said we have a little perfectionist on our hands and I may want to watch that. No clue where he gets that from;)

Tomorrow my friend, Jaye, is putting on a luncheon to benefit Ronan’s Foundation. I cannot be there and am so sad, but to be honest, I don’t think it’s something I could handle at this point in my life. My anxiety issues are still very intense and I think it would have been too much. I have testing at PCH with Ronan all day but I will be thinking of Jaye and her friends who worked so hard to put on this beautiful event for us. Thank you, Jaye. I am so excited how fast all of the seats sold out and I want to say a big thank you to everyone attending. I promise, once Ronan is remission that I will be much better with things like this. Right now, all I can seem to focus on is getting though the days and taking care of Ronan. I am so appreciative to you and all of your amazing friends who have worked so hard on this for us. It is going to be an amazing event!

I think I have written enough for tonight, even thought I could blab on forever. I am going to leave you tonight with a question though. What is the one thing you are scared of in life?? I feel as if going through this, I have no fears and I could do anything. Just call me Maya “Danger” Thompson. I don’t know if this is such a good thing, but it is how I feel. Before all of this, I was scared of so many things and I have realized this kept me from doing a lot in my life. What a waste. Life is too short to not take chances and live everyday to the fullest. Ronan is fighting for his life right now, every second of the day. What would you do differently if this were your situation? Try to take your fear and overcome it. It will free your soul <3

G’nite peeps. Lovely dreams of all things sweet.

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