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
Thanks DD, for the lyrics to this. It is a perfect song for
Awake. Lovely. Fell asleep for about an hour. Woke up due to horrific nightmares. Not going back to sleep anytime soon. I talked via text messaging to Ashley’s mom today; the little girl who underwent surgery. It went very well and she is now recovering over in the ICU. Her mom told me to prepare myself. Fuck. How do you prepare for something like that. I sent Woody the text message she sent me about what to expect. His response? “Fuck.” Great. My rock who is usually my positive power, knows what we are about to go through is going to be hell. I am trying to mentally prepare myself…. but I don’t even know if this is possible. She did tell me that she is completely in love with Dr. La Quaglia though:) That makes me feel a little better. Cheers to Ashley and her successful surgery. So very happy for her and her family.
Today, we spent the day all together as a family. Liam and Quinn leave tomorrow and I am devastated. Ronan is going to be so sad; those boys are his life. We tried to soak up being together as much as possible and had a great day. Lots of laughing and throwing snowballs:) Tonight, Woody and Quinn ran out to get some dinner down the street a few blocks. Ronan was so upset after they left because he wanted to go with them. He screamed and cried the entire time they were gone which was about 20 minutes. I was dealing with him and I looked over to see the tears pouring out of Liam’s eyes. I immediately left Ronan to his temper tantrum to tend to Liam. I sat and held him and asked him what was wrong. He told me how much seeing Ronan scream and cry, bothers him. I wanted to die right then and there. Of course it all makes perfect sense. Liam has been spending a lot of time with Mimi and Papa on this trip because they are his safety, his security. With them, there is no chaos, no unexpected, no scariness. Liam lives for calmness, structure, and rules. With Ronan, you never know what you are going to get and every second is different from the next. Liam does not like this at all and seeing him tonight all I wanted to do was to take him home, and just be able to put him back in his secure environment where all this madness does not exist. I held him for a long time, let him cry, and just explained to him why Ronan was acting this way. Ronan got so mad that I was tending to Liam that he shut himself in the closet. I let him; Liam needed me. As soon as Woody and Quinn returned, we ate dinner and then he took the twins upstairs to watch football. I curled up with Ronan and fell asleep; for a little while anyway.
So, it is officially New Years Eve. I am so ready for 2010 to be over. Worst year of my life. 2011 is going to be much better; I have a great feeling about it.
My friend, Sandy, sent this to me today. It made me smile and I agree with almost everything on this list. Thanks, ho;)
Written by Regina Brett, 90 years old, of the Plain Dealer, Cleveland , Ohio :
To celebrate growing older, I once wrote the 45 lessons life taught me. It is the most requested column I’ve ever written. My odometer rolled over to 90 in August, so here is the column once more:
1. Life isn’t fair, but it’s still good.
2. When in doubt, just take the next small step.
3. Life is too short to waste time hating anyone.
4. Your job won’t take care of you when you are sick. Your friends and parents will. Stay in touch.
5. Pay off your credit cards every month.
6. You don’t have to win every argument. Agree to disagree.
7. Cry with someone. It’s more healing than crying alone.
8. It’s OK to get angry with God. He can take it.
9. Save for retirement starting with your first paycheck.
10. When it comes to chocolate, resistance is futile.
11. Make peace with your past so it won’t screw up the present.
12. It’s OK to let your children see you cry.
13. Don’t compare your life to others. You have no idea what their journey is all about.
14. If a relationship has to be a secret, you shouldn’t be in it.
15. Everything can change in the blink of an eye. But don’t worry; God never blinks.
16. Take a deep breath. It calms the mind.
17. Get rid of anything that isn’t useful, beautiful or joyful.
18. Whatever doesn’t kill you really does make you stronger.
19. It’s never too late to have a happy childhood. But the second one is up to you and no one else.
20. When it comes to going after what you love in life, don’t take no for an answer.
21. Burn the candles, use the nice sheets, wear the fancy lingerie. Don’t save it for a special occasion. Today is special.
22. Over prepare, then go with the flow.
23. Be eccentric now. Don’t wait for old age to wear purple.
24. The most important sex organ is the brain.
25. No one is in charge of your happiness but you.
26. Frame every so-called disaster with these words ‘In five years, will this matter?’
27. Always choose life.
28. Forgive everyone everything.
29. What other people think of you is none of your business.
30. Time heals almost everything. Give time time.
31. However good or bad a situation is, it will change.
32. Don’t take yourself so seriously. No one else does.
33. Believe in miracles.
34. God loves you because of who God is, not because of anything you did or didn’t do.
35. Don’t audit life. Show up and make the most of it now.
36. Growing old beats the alternative — dying young.
37. Your children get only one childhood.
38. All that truly matters in the end is that you loved.
39. Get outside every day. Miracles are waiting everywhere.
40. If we all threw our problems in a pile and saw everyone else’s, we’d grab ours back.
41. Envy is a waste of time. You already have all you need.
42. The best is yet to come…
43. No matter how you feel, get up, dress up and show up.
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.
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
- New gene for childhood cancer neuroblastoma discovered (physorg.com)
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.
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.
Christmas in New York truly is magical, even under our circumstances. Today, we spent the morning hanging out at the Ronald McDonald House, just enjoying the activities that they had going on. Around one, I skipped out, hailed a cab, and went over to pick up Liz so we could do a little holiday shopping. I had yet to get Wood a thing and talk about waiting until the last minute. Today really was the only free day I’ve had alone to do his shopping. Liz and I walked the streets of New York for 5 hours straight. It was busy, chaotic, and so much fun. We had the best time together and I feel so lucky to have her in my life. She is such an amazing young lady and truly is like a sister to me. The streets and shops were full of people everywhere and I could practically feel the city buzzing with the excitement of the holidays. I loved every second of being right in the middle of it. Today, I enjoyed a day of escaping our reality for a few hours…. even though Liz and I talked about Ronan a lot, we spent most of our day just enjoying our surroundings. It was a wonderful Christmas Eve day. Tonight, everyone came over to the Ronald McDonald House and we hung out. Ronan had a couple of meltdowns… he’s tired tonight; but happy. Liam and Quinn have been great and we have really been enjoying them. They love staying here with us. RMH does such an amazing job of having fun activities for the kids to do and everyday there is something going on. We feel so blessed to be staying here for such a long amount of time. It is a very safe, fun, positive, environment. I just know Quinn and Liam are going to look back at this Christmas and remember it as being a fun time, full of lots of laughter and love.
I wonder what you are all up to. I wonder if Christmas means more to you this year? It does to me. All I want for Christmas is for my family to be healed, my friendships to be stronger, and to have Ronan healthy. It was so hard for me to see his tumor on the scan yesterday. It made everything so real and seeing the very first scan, when the tumor was everywhere, took my breath away. It was so huge before. I just don’t know how that thing was growing in my baby and we had no idea. His stomach did not protrude at all…. he acted and felt fine. The doctors could not even feel it when they pressed on his stomach, yet it was everywhere. Such a scary thing. It it wouldn’t have been for his little left eye, we would have never known what was going on. I am thankful every single day that it metastasized up into the orbit of his eye… otherwise whose knows when or if we would have caught this.
Tonight, Karen, Olivia, and Liz went to church here at 11 p.m. I wanted to go with them, but felt like I needed to be with my boys. Karen said she was going to pray extra hard for Ronan, for me. What a beautiful gift they have given me this Christmas. I couldn’t ask for more. The thought of all 3 of those beautiful souls, sitting in a church in NYC, praying for us brings tears to my eyes. It’s one of the best gifts I’ve ever been given. I know he is going to be healed, I know he is going to grow up and be the most amazing man, there are too many people thinking and praying for it to go any other way. Too much love surrounds this little boy of ours.
This Christmas, I would like to say thank you to all of you and leave you with a little toast. To all of my family, friends, strangers, near and far…… thank you for thinking of Ronan and following his journey and believing in him. A toast to all of you. Cheers!
To The Truest
To The One’s Who’ve Been There
To The One’s Who Who’ll Be There
To Dropping Everything
To NO Judgements
To No Doubts
To Knowing What Matters Most
To Having Our Back
To Asking For Nothing In Return
To Living Your LIfe Full of Being Selfless
To All Of You, Who Know This Is True, And Know It Is Your Soul We See Shining Through.
The morning started early. Had to wake up Ro and he had to drink contrast in order to have his CT done. We had to fill up a big cup with sprite, added the contrast, and Ronan had to drink all of it. If any of you know my strong willed child, you would have been so proud of him this morning. I was thinking all night, there is no way he is going to cooperate and drink all of this crap before going to the hospital. We got him a straw, it took him about 20 minutes and I talked him though it the entire time. He did it, without putting too much of a fuss. What an amazing little guy…. this is all so unfair to him but he handles most of it so well.
Ronan’s scans are done. We won’t know final results until next week. Dr. M took us back and showed us the CT though. He couldn’t give us exact measurements, but the tumor looks very contained. Maybe about the size of a small apple now. I hadn’t seen the very first set of scans that Ronan had done, until today. His tumor was massive. It had pretty much taken over his entire abdomen. Dr. M said it looks like it has come off of the aorta which is great news… but we still won’t know final results until next week. The bone marrow was done as well so we will be waiting on that too. Lots of waiting, trying to be patient. Good thing we are in such a great city to keep us busy. We don’t have to be back at the hospital until next week so we are going to enjoy our little break. I will let you know as soon as I hear more.
While we were waiting for Ronan to come out of anesthesia, there was a big fuss around the hospital. I quickly learned that Jake Gyllenhaal was going to come by to say hello to the kids. He showed up for about 2 hours and was so adorable. He took pictures with the kids, talked to parents, etc…. As he was getting ready to leave, our little Olivia ran up to him and handed him a Rockstar Ronan card and the naughty version of his Rockstar Ronan bracelet. Olivia pointed to where Liz and I were sitting and Jake came over to say hello and talked to us for about 5 minutes. He was so sweet and adorable. He put on Ronan’s bracelet and said he was going to wear it and took one look at Ronan’s picture and told us how beautiful he was. Which we all already know, but it was very sweet of him to say and to take the time to talk with us. You can tell he really is a nice person and he totally made all of the kids’ and mom’s day today:) Not to mention, Liz, who was over the moon to say the least:) Maybe he will rock the Rockstar Ronan bracelet on the red carpet and help us raise awareness for childhood cancer:) He seems like he has a very good heart.
That’s all for today, thanks for checking in with us and Happy Holidays!!
The picture below is for playroom Cathy at PCH. Ronan says “Hellllloooo Mr. Potato Head!” We miss you!!
Tomorrow is a big day. Huge. I should be sleeping….but I am so nervous I can’t. We check in to Sloan at 9:30 and Ronan will his anesthesia, they will do bone aspirations on the front and back of him, and then the CT Scan. Please continue to pray and send great thoughts his way. I KNOW the scans are going to come back with amazing results. I have faith that what we are doing is working and Ronan is so strong; he is going to beat this disease and we will never look back.
Tonight, I took a look at my family and stepped back a bit. I know this is my blog and I sit here and talk about how hard this is on me….. but I hope you all know that I know this is hard on our entire family. Sometimes I feel selfish for going on and on about me…. but to talk about how badly this is hurting everyone is too much for me. It is evident that everyone is hurting and suffering from this. It breaks my heart to watch my family have to go through this and see how scared and sad they are. Everyone puts on such a brave face but as I sit back and watch certain situations and observe… it’s like a slap in the face. I wish I could take away everyone’s pain and sadness. I would give anything to just have my 3 boys, home with Woody and I, under the same roof with everyone healthy. I am hurting; but there are so many other people who are hurting too. I am trying my best to be a good wife, mom, daughter, friend, etc….. Sometimes I don’t know which direction to turn and it is all overwhelming. I’ve been doing a lot of talking to Quinn; I miss Liam who has been staying with Mimi and Papa. I HATE that because of this disease, my 3 little guys can’t be together like they used to be. Tonight, I am just sad. But tomorrow, I will be brave.
I love you all. A special I love you tonight to one of my favorites, Liz. You know why; and you are the truest of the true. Please pray extra hard tonight and tomorrow for our little Rockstar. I will update you when I know something. Thank you all.
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!!
I have so much to say tonight, that I don’t even know where to start. I guess I’ll just start by catching you all up on what we have been doing. Yesterday, Woody and I had the chance to walk the city a little bit by ourselves. We did a little Christmas shopping for the boys, since we have yet to get them anything. After that, all 3 boys came back to the Ronald McDonald House with us for the night. Ronan was in heaven and it was so nice to all be together as a family. I had a few little issues with Quinn that were concerning me. He was very moody, crying a lot, and really disrespectful to me which is so not the child we have raised. I am trying to be patient with him, but I am also not going to baby him and give him his way when he is telling me he wants soda at 9:00 at night and then freaks out because I won’t give it to him. I told Woody that I needed some one on one time with him the next day because I could tell he was in desperate need of it. He is hurting, he is confused, and he is scared. It kills me in every way shape and form. I cannot stand seeing my child this way; someone who used to be so carefree and not have a care in the world, has now had his entire life turned upside down. I don’t get to be a mom to him very much anymore….. it is all so unfair. Today, Quinn put up a little bit of a fuss, but I told him we were spending the entire day together and that is precisely what we did. We bundled up and walked the streets of New York together. We had a great breakfast and a very good talk. I tried my best to have a really good heart to heart with him. I told him how I was his mom, even though I don’t get to be with him as much, that would never change. I told him how when I tell him something that he doesn’t like, that he needs to be respectful of what I am saying because it is for a good reason. I told him how unfair this all is and how he has every right to be mad, sad, scared and confused and that he could come to me with anything he is feeling. I also told him that just because I spend so much time with Ronan, it does not mean I love him more. He listened, smiled, and told me Ronan having cancer makes him nervous. I explained to him why we were in New York City…. Not for a vacation, but because they have the best doctors here who are going to get him better. After this big talk we headed to Dylan’s Candy Shop. Nothing like a little candy to make everything alright. We had a great day together and I could tell it meant a lot to him. It’s been such a long time since I’ve gotten to spend some quality time with him. I refuse to let all of the parenting I’ve done, be undone just because I am not around. I have worked way too hard for that to happen.
Ronan, Liam and Woody spent the day together at FAO Schwartz. It was good for them. We all met up later in the day and then Ro, Quinn, Wood, and I came back to the Ronald McDonald House to hang out. I was having a lot of anxiety once we got back here…. I’m still having a hard time accepting our reality. I let Wood take the boys downstairs to enjoy a party they were having and then I decided to go on a little run. My little run turned into a 12 mile run. I feel like I could have run an entire marathon. I ran up to Central Park in the dark. If you would have asked me 6 months ago if I would have run Central Park, in the dark, alone, I would have told you no way. Surely I would have been mugged, raped, or even murdered. Tonight, I laughed out loud at this thought. My kid has fucking cancer; none of those things can even apply to me now. It was just what I needed tonight. So therapeutic, so painful, so raw. Every inch of my body hurt but I like the pain. It is nice to feel physical pain instead of the pain I feel 24 hours a day. A different kind of pain. It hurts so bad, that it felt good. I am figuring this city out through my runs. I will know it like the back of my hand in no time. This will be my therapy while I am here and Central Park will be my Church. I did a lot of talking to the gods, stars, and moon above on my run. It was good for my head and was so gorgeous. I don’t regret many things in my life; but one of them will always be not living here. I was so close to going to NYU after high school…. This city is my kind of place; a place that everyone should experience. It is going to heal me, heal Ronan, and it will always have a special place in my heart. I vow to one day, own a place here. It is a city that feeds my soul.
I spent the night taking care of Ronan while Woody, Mimi, and Quinn went to see “Elf” on Broadway. Woody wanted me to go, instead of him, but my anxiety went through the roof as soon as I pictured all of the people I would be surrounded by in a confined place. I can’t do things like that anymore. I told him I was going to going to have to take my Xanex just to get though it. I opted to stay here with Ronan who has been such a handful. Oy vey! Maybe I should have went to “Elf”……
That post was from last night. I’ve been having Wifi issues so that is why there has been lack of updates. Sorry! It’s been driving me crazy, but hopefully we will get it taken care of. We are at Sloan all day today doing another Stem Cell collection. The days here have been very busy and this week is packed. I will keep you updated as best as possible. Just know that we are loving New York, feel very blessed to be here, and are taking things one day at a time. Love you all. Have a beautiful Monday!!