Tag: support

A Barefoot Hike and Little Socks

Ro baby. Everyone is asleep. It is late. We had a late night out tonight. We went over to The Willets’ house, for dinner and to catch up and let the boys play. I so missed you tonight. I was so sad you were not with us. You loved those boys so much and used to always keep up with them, despite your younger age. I sat back and watched as L and Q, ran around with Gay’s three boys all night long. I used to have 3 too. Where are you? It feels so wrong to be the mom of only two boys now. I almost can’t take it. But it was nice to be with all of them tonight. I will say this for the rest of my life….. but we truly do have the best friends. Some are friends we have had for a long time…. like the Willets. Others are new and who came into our lives at the beginning of all of this, like Melissa and her family whom we had over last night. All are beautiful. After Melissa, David and their kids left last night, your Daddy goes, “You have made some really amazing friends through all of this.” I just smiled and told him I knew. I do know. I think about it all the time. It is another one of those gifts you have left behind. Our lovelies are everywhere. We had a nice time tonight as being with the Willets is calming to my soul. We love them so much. I love how laid back they are, funny, kind, and crazy. I love being surrounded by their boys and your brothers. I remember how much you loved being with them. I hope you were with us tonight. I think that you were. I was showing Gay how to put Pandora on her iPhone as she is new at all of that iPhone stuff and I’m an old pro. As I was playing with her phone, mine which was sitting on my lap, started playing music. Katy Perry’s, “Firework,” just started to play. I thought of you. I hope it was you. I think that it was. This life is so strange now. Nothing makes sense. I don’t know how it ever will again.

So, this WordPress Blog is so detailed. I have a whole stat tracker which gives me very specific details on how all of you lovelies are reading this blog. For example, on May 10…. a day after you passed away, Ro… I had 55,923 hits on this blog. On that one day alone. I check it out every few days, just out of curiosity. It tells me what search engine term people are using to find out about you. I get a lot of weird things, such as today… somebody searched this… “me and you baby dolls can drink.” Um o.k. Random and weird, but I guess I tagged Baby Doll before since that is what I used to call you and your website came up. These are the most popular search engine terms used from today.

rockstar ronan 1,438
rockstarronan 352
rock star ronan 93
ronan rockstar 54
ronan thompson 45
rockstarronan.com 43
rockstar ronan blog 43
http://www.rockstarronan.com 42
maya thompson blog 22
the ronan thompson foundation 21
rockstar ronan dies 16
maya thompson 15
rockstar ronan com 14
ronan thompson foundation

I get some funny things, some disturbing things, but most of all the two things that are searched the most are “Rockstar Ronan,” and “Rockstar Ronan dies.” The last one rips me to pieces every time. I often catch myself thinking, “Wait. What? Ronan died? How can that be true?!” It’s as if I am the blog reader, not the writer. Oh, how I wish that were true. My body than returns to itself, because reading those words truly does feel like an out of body experience. I have to remind myself that you, my beautiful son, did die of Cancer. I sometimes cannot even take reading this, so don’t ask me how I am able to sit here and write this. I still have no clue. One day, I will sit back and read all of this, but not today. I don’t know what I am waiting for, but as of now… it’s the writing that I need to do. The reading, can wait. I know there is no way I am ready to read what I have written in the past. It is going to be so painful and everything is still too fresh and raw.

Ro baby. I started that last night but had to stop due to the Melatonin kicking in. I had dreams about you. They weren’t happy, but they weren’t sad either. I don’t remember what you looked like, but I remember asking you questions. I asked you if you were scared. You told me, No. I’m glad for that. I hope you’re not scared as that is one of the things I worry about most. I still feel like I have just forgotten you somewhere, and that you are all alone in this big, big world. I miss you so much. I am glad I got to dream about you last night. It does not happen often.

I woke up this morning, knowing that I had to have a productive day, regardless of the day off that your brothers had from school and your Daddy has off from work. I got up and showered. I messaged back and forth a bit with a girl named, Katie, whom I have never met, but I have wanted to meet for some time now. She is just a friend on FB and owns an adorable kids clothing store. She is always reposting this blog on her business FB page and I’ve wanted to stop in for a while to tell her thank you. She told me she wanted to run some ideas past me so I said I would stop by this afternoon. I took Quinn with me. I walked into her store, Garage, and instantly fell in love. It is filled with all the things, your stylish self, would have gone crazy over. You loved to dress so sharp and stylish. I met Katie and felt like I had known her for years. We sat and got to know each other, while Quinn played and explored in her store. We went over an idea she has, which I’ll be talking about a little more once the details are finalized. I left her with a bunch of your bracelets, the Naughty and Nice version. I have to be careful about the people I partner up with, who want to help with your Foundation…. but everything with Katie felt right. And just as I was getting ready to leave, “Landslide,” by Stevie Nicks came on. If that wasn’t a sign right there, I don’t know what is. I started to tear up, and Katie told me I could sit and listen to it if I wanted. I told her that I had to go, because I knew if I did stay and sit, that I would be a uncontrollable mess. I left there with tears in my eyes but a smile on my face. Thanks for being there with me today, Ro.

I ran a few more errands with Quinn. Talked to NY Miss Macy. She has been with Tricia all weekend long as Trish flew to San Francisco for this long weekend to spend some time with her. I love that. I so wanted to go, but it is not the right time for me to be away from your brothers. It made me happy though, to know my beautiful besties, were spending some quality time together. I sometimes cannot believe that had it not been for you, that Macy would have never been introduced into our lives. She is a gift that I will treasure forever. For as big as the hole in my heart is now, I know you are trying to fill it up as much as you can with people like Macy. I know that you are still working away, trying to find ways to make me grateful and happy again. Your gifts come in so many different forms now. For that, I am grateful.

After finishing up my errands with Quinn, we returned home and the rest of the afternoon was spent doing things around the house. Checking things off my shit list, left and right. I picked up my friend, Julie, who lives right down the street and I took her Inferno Hiking with me. She loved it and almost threw up, but did not. She is a trooper:) I am also glad to know that I am not the only one who sometimes throws up after a hard workout. We got to the top and she was saying that it was kind of like Hot Yoga. I told her exactly, except it was much better:) I can’t wrap my head around being peaceful enough within myself to go back to Hot Yoga. I told her how Inferno Hiking to me, is very intense, yet peaceful. She completely agreed. As we were heading down, Mountain Mike, was on his way up. So funny that we always seem to be there at the exact same time, even though the time that I hike, is never consistent. We said our hellos and I introduced him to Julie. He continued up as the two of us then started on our run down the mountain. It was the perfect ending to this day as you know how hard weekends are for me.

Tonight was spent quietly around the house. Your daddy went to the office and Liam and Quinn are snuggled up together on the top bunk of their bed. I have been busy putting all of the laundry away. It’s taken me forever. I have been washing the same pair of your socks for months now. I refuse to put them away. I just wash them over and over. I carry them around with me. I can’t believe I don’t have your little feet here to put them into. I can’t believe how I wander around the house, doing busy things and often just walk into your room, expecting to see you playing. Your room is still the way it always has been. I don’t want to change a thing. Liam often plays in there. I like to write in there and sometimes sit and quietly think. I still cannot wrap my head around the fact that you are not here to play and sleep in your room. This all still seems like a bad dream, except I cannot seem to wake up.

Where are you baby? Are you playing with Esther. Please tell me yes. Tomorrow, it will have been 4 months since that sweet baby girl passed away. Your 4 months will be here soon as well. Please watch over Esther’s mama tomorrow. Well, everyday, really… but tomorrow extra close. I am worried about her. I feel such a need to go and see her. I promise I will get back East to do this soon.

I think this may be all for tonight, Ro. I have some homework to do before I see Dr. Joanne tomorrow. She took you with her when she went barefoot hiking this morning. I’ll send you the pic she sent me. I love you to the moon and back, baby boy. I hope you are safe. Sweet dreams, my love.

Dear lovely readers…….. Many of you have been asking about Ronan’s bracelets and where you can get them. I am almost completely out, but if you live in AZ…. there are some places that you can get them. Here are the locations::::

The Water Connection:::::::Nice Bracelets only::::: 3929 E Camelback Rd. Phoenix, AZ 85018

Green Cleaners::::Halle has Naughty only::::: 3912 East Camelback Road, Phoenix, AZ 85018

Garage::::Katie has both Naughty and Nice:::: 7144 E. Stetson Drive, Scottsdale, AZ

For my out of town peeps. I PROMISE, I’ll let you know when more are available. Should be later this week. Thanks for the LOVE and SUPPORT.

xoxo

Not following the yellow brick road

HAPPY VALENTINE’S DAY! RO, MAMA, AND NANA WENT FOR PEDICURES!!!!

I wish I could tell you all that I have not updated my blog for a few days because I have been so busy soaking up all of my precious time with my amazing family. That we have had such a fun filled, fantastic weekend full of no worries whatsoever. But, that is not the case. The weekend started out that way. We left PCH on Friday happy as clams, ready for transplant and for a great weekend. We took Ronan on Saturday to the twins’ basketball game and had a wonderful time. Afterwords, I came home with Ro and my mom and we were playing outside in the backyard enjoying the sunshine and warmth of the day. 30 minutes later Woody arrived, came storming outside, demanding that he needed to have a serious conversation with me and needed to have it now. My stomach instantly dropped, my heart fell to the floor and I knew something was wrong. He said he had just gotten off a lengthy phone call with Dr. Eshun and they had done the randomization for one stem cell transplant or two. We were randomized for one. I knew this before Woody even told me. Woody had asked me 3 days prior to this if I thought we were getting one transplant or two. I looked him dead in the eye and said, “One.” He goes, “How do you know?” I told him I just had a feeling. This is not the news we were hoping for. My head started spinning and it was as if we were right back to where we started, at day one of Ronan’s diagnoses. Although Ronan has made great progress, Woody and I have done enough research to know that not enough of his disease is gone for us to go ahead with just one transplant. This cancer is too strong. I spent all of Saturday crying my eyes out, trying to wrap my head around all of this, and Woody went straight into Woody mode and armed himself with as much information as possible as far as other alternatives. He figured out who we needed to call today to get answers from. He has spoken with several doctors from New York, San Francisco, Chicago, and Atlanta. Time is not on our side and time is not our friend.

The one thing that every doctor that Woody has talked to, cannot figure out is why is Ronan’s Bone scan is negative, his Bone Marrow clean, his VMA (urine test) is negative, yet he has so many spots left on the MIBG scan. Dr. Kusher believes that the Neuroblastoma, is still in Ronan’s bone marrow, not his bones. We are at a crossroads with what to do and are looking at basically two different options. As of now, we are deciding between an MIBG therapy in San Francisco or heading to Sloan Kettering to start 3F8. As soon as we heard that  Ronan had only been randomized for one stem cell transplant, we pulled him off the COG study we have had him on. There is no point in following their rules anymore. Although Ronan’s path is not clear, I have no doubt that we will find our way through this maze. I keep telling myself that Ronan is so unique and such a special little boy, that he was not meant to follow the yellow brick road on this journey. He was meant to make his own road full of yellow, purple, red, green and every other color you can possibly think of. Maybe this is a blessing in disguise because Ronan was not meant to have a transplant at all as it wasn’t the right answer. I have felt uneasy about his whole transplant thing from the beginning. I know what my heart and gut are telling me what the right answer is… but I think it is going to be a day or two until the answer is 100% clear. Woody and I are doing everything possible, with the help of my dear Fernanda who has been a godsend, to find out what all of our options are. We are still meeting with our transplant doctor tomorrow, Dr. Adams, but we will not be starting transplant on Thursday like we had originally planned. Just goes to show you how tricky this disease is and you really can’t ever prepare for anything. Talk about having the rug pulled out from underneath you. I told you Ronan was a rule breaker…. I really believe he was not meant to follow this protocol…. he is going to make his own.

I was a mess this weekend but tried to go on with some normal things we had planned. On Saturday night, Woody and I went over to Tricia and Max’s house with our friends, Danielle and Jay. We had fun, but I told Trish the next day, you know your in a bad place when not even Danielle’s toxic margaritas can mask your pain. We came home from Tricia’s around 1 a.m. and I tossed and turned the entire night. On Sunday, I had a dinner planned with some of my girlfriends and I refused to cancel. I joined Jen, Stacy, Jocelyn, Fernanda, Gay, Heidi, Bethany, Shelby, and Melissa, for a very special dinner that was supposed to be my “sending off” into isolation, but turned out to be, o.k…..here is the new news and what we are facing…now what the fuck are we supposed to do??  I tried my best to enjoy myself and when you are surround by the most beautiful women in the world, it is impossible to not enjoy yourself. I had to let go just a little bit and I have to trust in this new plan that is going to present itself. I texted my Mr. Sparkly eyes today and told him that decisions are begin made for us and we just have to trust. He believes this too, there is something bigger than us guiding us in the direction we need to go. I truly believe this with all of my heart.

What I am asking from all of you is just your continued prayers and love and your belief that we will make the right decision for our baby boy. Whatever path we choose, or whatever path chooses us, there is no looking back. We refuse to second guess anything we have done or are going to do. To live like that is foolish and we are very aware of that.

Hopefully by tomorrow, we will have a clearer vision of what we are doing as we need to get Ronan started on his next treatment as soon as possible. As far as Ronan goes, he could not be happier. He has been loving being at home with his brothers and playing outside. He looks amazing and his spirits could not be better. I am reminded everyday by looking at him what a gift he is as well as Liam, Quinn, and Woody. I am such a blessed mama and wife.

Please, no tears for us yet. Trust me, I’ve done enough crying the past few days for each and every one of you. This is a blessing in disguise. It HAS to be.

Mess with the bull, you get the horns!

Tonight is the eve of my babies surgery. I know it is a
very good thing that tomorrow is here; but I am still filled with
an overwhelming amount of anxiety, anger, sadness, sorrow, etc…
basicially I have been through about every emotion one can feel
today. We have been waiting so long for tomorrow to come; and now
that it is almost here… I don’t even know what to do with myself. I
won’t be o.k. until I hear the words that Ronan is out of surgery
and he is doing fine. Until then, I am going to be a wreck. I will
find the strength to keep it together as much as possible tomorrow,
but it is going to be a very hard day. I spent this morning with
Ronan, doing our usual things. We went downstairs and I made him
breakfast. We came back upstairs and finished watching “Despicible
Me” from last night. We then all got ready for the day. I had to
laugh at Woody today at a comment he made to me. I was just getting
out of the shower sans no make-up… he looked at me and goes,
“What’s going on with the dark circles under your eyes? “When did
that happen?” I tried my best not to punch him, and just calmly
told him that they have been there for a few weeks now. He tried to
argue with me and told me that they have not; and I then told him,
yes they have and thank god for make-up. Without it, I look like
somebody has given me two black eyes. I’ve never dealt with the
issues of black circles under my eyes before and I thought it was
funny that he just now noticed today. Looking in the mirror anymore
is weird for me… I look different and my eyes definitely tell the
story. I have been laughing about this all day, because for some
strange reason it is funny to me. I’ll take any kind of humor I can
get right about now. After we got ready, Woody sent me out to get
the pedicure he put in my stocking for Christmas. It was so nice to
get out and go pamper myself a little bit. I got a dark purple
color for Ronan of course. New York was cold and dizzily today and
I quite enjoyed my walk. As I was leaving the pedicure place, I was
in the middle of texting my friend, whom I’m calling, Mr.Sparkly Eyes, to please keep Ronan in his prayers tonight and
tomorrow, which I know he always does, but I said something along
the lines of, “you know I have my issues with God, but I’m asking
for anything at this point.” (and please, no snarky comments here,
I have a right to be mad and questioning everything) As soon as I
texted him those words, I passed a small Catholic Church with the
Fleur De Lis symbol on the outside of it. The Fleur De Lis has kind
of become a family symbol of ours. I walked past the church and
then immediately turned around and went inside. It was empty and I
walked right up to the front and sat down. As soon as I did this I
started crying and sat and cried for a good 30 minutes. I cried, I
prayed, I begged, I asked questions and I cried some more. It was
so peaceful inside and I felt such a sense of comfort and warmth. I
lit 3 candles inside that church tonight. One for Ronan, one for
Jack Morton, and one for Mia Foutz. I said prayers for all of them.
I then left the church but not before I filled it with about 50 of
Ronan’s little cards with his picture and story on it. It’s been
about 16 years since I’ve been inside of a church to pray. It was
just what I needed and exactly where I needed to be tonight. I
haven’t talked to anyone really today, besides my friend, Pamela
White. I have kind of gone into hiding today… so sorry to my
friends…I’m a little too weak to talk right now. I needed to talk
to Pam tonight and that was all. I needed her because she has been
exactly where I am standing, litterely. It was her voice that I
needed to hear, the comfort in her voice, and her advice. She
talked, I listened, I cried, and I believed in every word she was
saying. She told me there was no way to prepare for tomorrow, and
told me no day will ever be as bad as the day Ronan was diagnosed.
She is so right. Nothing in my life, so far, will ever be as bad as
that day. Woody keeps telling me tomorrow is the biggest day of our
life and he is right. He also has been so great about sending me
text messages telling me how Ronan can do this, how he is so much
stronger than every other kid. He is so great about doing things
like this… I tend to go into shut down mode and push everyone away.
I just want tomorrow to be over and Ronan to be o.k. I want that
fucking tumor out of his abdomen. We have to be at the hospital at
7 a.m. East Coast time. Ronan is not scheduled for surgery until
10:50 a.m,, but he may be going in earlier depending on how the
morning goes. I will keep you all posted as best I can and I am so
thankful for all of your prayers and how much you will be thinking
of him/us. Thank you all for your messages today, via text,
facebook, phonecalls, emails, etc…. They mean so much to me. I got
a really sweet one from my friend Shelby that I am going to share.
Thanks for this tonight, Shelby, I really needed this.
I wish you a couple of hours of sleep
tonight and a smooth day tomorrow. Your family has been on my mind
on day. I took you to yoga with me tonight and turned my practice
over to you. My teacher pulled off his shirt mid class (yeah!) and
he had a beautiful tattoo that said “this too shall pass”…just
like yours. I take it all as a sign and I know that you will take a
huge jump in your goal to kick cancer’s ass tomorrow when you get
it all out of your baby. Blessings and strength mama!
Shelby My friend, Noelle, also reminded
me tonight that Ronan is a Taurus. A stubborn bull who is
determined to win! He will win, he will fly through this surgery
with such strength and determination. He is our fighter, our hero,
our Rockstar! Nothing is going to stand in his way. Let’s get this
freaking show on the road already. So, I am asking that you keep Ro
and all of his doctors in your prayers tomorrow. Dr. LaQuaglia,
especially as well. He is beyond blessed at what he does and I have
complete faith in him. He is going to save our baby. Sleep well
tonight and I hope your dreams are filled with images of Ronan. I
am leaving you tonight with a beautiful picture of a butterfly. To
me, butterfly’s represent a rebirth…. a shedding of their cocoon
only to be reborn as something even more beautiful than before.
After tomorrow, Ronan will be reborn and free of the mass in his
abdomen. A new, fresh start for him. The rebirth of our baby boy. I
love you all and I promise to update you as soon as we hear
anything tomorrow. xoxo

Angels waiting in the wings

I am amazed at the people who have come out of the woodwork to help us. People that we know and complete strangers just because they are touched by Ronan’s story. I put something out into the universe today… and I am getting amazing responses. People who are willing to go above and beyond to help us any way they can. It is people like this that the world needs more of. Selfless people who stand by their word and pour all the energy they have into helping out people like us. I’ll never look at the human spirit the same again.

All has been pretty quiet around here. Ronan is still storming right a long. He had a few fits today….bouts of anger and hitting me for no reason. Well, I guess he had a reason…. his reason. He was that angry that Liam and Quinn were not home. He likes to take it out on me and when his little temper hits, I bear the brunt of it. Not fun to see or watch. He’s like Dr. Jekyll and Mr. Hyde. I never know what his moods are going to be like. I am doing my best to discipline him but sometimes nothing works and I’ve come to find out I just have to let him let his anger out. He’s got to be angry about a lot and I know he is having a hard time processing what he is feeling. It’s heartbreaking. I keep telling him that we will get through this and he will get better. He talks all the time about getting his “Iron Man” out. I don’t blame the kid.

We go to the clinic in the morning and then Mimi Kay and Kathy are going to watch Ronan so I can get some things done. It will be nice to get out of the house and take a break from Ronan. I am meeting my friends Jen, Bethany, and Trish for lunch and to go over some things for Ronan. I am so lucky to have girlfriends who are willing to drop whatever to see me and work on some ongoing projects with me. All of their support has been keeping me going.

I can’t believe the holidays are right around the corner. It’s my favorite time of year to live here. I am hoping to take Ronan to a pumpkin patch this week or next. We will of course talk Liam and Quinn as well. Last year we lived at the pumpkin patches and I took all of the boys half a dozen times. We are a pretty active family and I love taking my 3 little guys off for adventures. It’s been awhile since we’ve done anything like that. Ronan seems to be feeling just fine so a pumpkin picking we will go.

I’m still trying to find my balance and where my life fits into all of this. Before this happened, my life consisted of a daily routine of healthy outlets. I’ve let all of those things go and can’t seem to get back into them. I miss my workouts, running, hiking, boot camp, etc…. Any time I have free from Ronan, I find myself feeling guilty. I feel like I need to be with him 24 hours a day. I know that’s not realistic or heathy, but time away from him feels selfish to me. I know I need a break and I am going to try to start doing some things again. To be quite honest, I feel like if I put myself back out there, there world is just going to swallow me whole. It’s that whole anxiety thing that I’m now dealing with I guess. I feel safer trapped inside my little bubble with my little guy by my side. It is something I will continue to struggle with but I will also continue to work on. There has got to be a happy medium somewhere… it’s just going to take work to find my new comfort zone.

It’s 3:10 in the morning now. I’ve been up off and on all night long. I finally feel like I am tired enough to sleep a few hours. Thanks for reading this, thinking of us, and praying for our family. Love to you all<3 Goodnight, friends.