Snow Falling in Flagstaff

Ronan. Guilt is what I feel at this time, in this moment. For living this life, without you here. For the smiles that I’ve smiled, for the laugher I’ve done, for the love I’ve given to your brothers. Guilt for going on when you know, all I want to do is be with you. I wonder if the reason you insisted on being with me, almost every second of every day of the almost 4 years that I had you, is because you knew you wouldn’t be able to stay with me forever. I wonder if you miss me as much as I miss you. I wonder if you are as sad as I am because we are apart. I think that you are and it kills me that there is nothing that I can do about it. I can’t wipe your tears, hold you close and tell you that everything is going to be alright. I can’t promise you that I’ll never let anything happen to you, because it did. The worst possible thing that could have happened, did. And I will never stop being sorry for that. It is so unfair that the four of us are left here and you are gone. I constantly feel like I have forgotten you somewhere. I am constantly looking over my shoulder for you to come running around the corner. I don’t think I’ll ever stop looking for you.

I have been struggling with my sleep so much. The devil, Ambien has been in and out of my life since you were diagnosed. I try not to take it, but I’ve had a solid 3 weeks where I have taken it almost every night. Dr. Jo told me to try Valerian Root last week. She told me she takes 2 of those and she is out cold. So, I took 4 a few nights ago and nothing. I ended up taking my Ambien instead. I haven’t taken my Ambien for 3 nights in a row now. It has been horrific. The first night I fell asleep in our bed, with your daddy. I was in and out of sleep the entire night. I felt like my body was on fire. I had the most awful nightmares. I was watching myself scream your name, knowing that you were dead, but nobody could hear me or help me. Sounds like my real life. When I take Ambien, it puts me into such a heavy sleep, that I don’t dream at all. When I don’t take it, I toss and turn all night long, only to dream the most awful things. So what’s worse? I don’t know as they both seem bad. I know that I don’t want to rely on something to sleep so I am going to try to continue to tough this out. And if I need a break every once in a while, for now, it is o.k. Dr. Jo is trying to get me to meditate before bed or to try some yoga. It’s worth a shot, right??

We spent the weekend up in Flagstaff. It was another 3 day weekend and staying home just didn’t seem like an option. We tend to go stir crazy without you around. It’s like everyone is trying to overcompensate for the fact that you are not here. We headed up on Saturday and spent a couple of days enjoying the cooler weather and lazy days. Your daddy was actually able to relax. I tried too but it was hard to be up there for the first time, without you. I had a moment where I was walking into the living room and Liam was sitting down at the table on the floor. The top of his head, looked so much like the color of your hair, that I thought it was you. It was like I had the wind knocked out of me when I realized it was not. Your brothers were so kind to each other this weekend. They are such good boys. They didn’t fight at all, which seems so rare these days. I watched them as they played together, took care of each other, and helped out with a lot of the things we asked of them. We all snuggled on the couch and watched some movies, your daddy took them on an Arctic Cat ride, I took a long nap with Quinn, which I never do anymore. I snuggled up to him and let him remind me of you and the way we loved to take our naps together. Your brothers were extra sweet to me this weekend. I think they could tell I was sad about having to be without you, doing our normal family things that we loved to do. It snowed up in Flagstaff last night. I watched the snowflakes fall with tears in my eyes. You would have gone crazy over it and made me take you out in the middle of the night to play in it. I would have without hesitation.

It’s going to take a lot to heal us all. We all have some good ideas, of some things that can help. We are all being very open about our sadness and we talk about you all the time. But we are a different family now as we are all different people. Even your brothers. I keep wanting to write your little brothers. As if I feel that you were older then they are. I guess due to everything you went through and how strong you were about it all. I guess due to the fact that I now feel like you are older than them and you are the one watching out for them and protecting them. And the wisdom that you always had as you were so much wiser than your almost 4 years old of age. I always knew this about you. You truly were a gift to us all.

I have a busy week as I am leaving for New York soon. My solo trip that is much needed. I need some time to go back to our favorite city where I can just be for a little while. Some plans are falling into place which I am loving. I planned this trip without having anything to do but some very nice things are coming about. I am excited for the little adventure we are going to have together as I know you will be with me, the entire time.

Alright little man. I love you so much. I hope you are safe. I miss you so very much.

xoxo

Meet Dr. JoRo

Dear Lovelies,

I am blessed. In many ways even after all of this. It’s hard for me to remember sometimes, because I have a lot of anger, sadness, guilt, and Inferno Fuckwad Bob that seems to consume me. I try to remember all the things I do have, things that so many people don’t like an amazing husband, my beautiful twins, family, friends, a house, food, and love. And I had the privilege of being Ronan’s mama. This does not make up for losing my Ronan, to Cancer. Living this life without him is Hell. Even with all the blessings I mentioned above. I’m not sure why I’m still here. It would have been so easy to take the easy way out and just end my life. I think about it a lot. But that’s the thing; I think about it. I think about what that would do to the lives of all my blessings above. It would also mean that I didn’t do the job that I promised Ronan I would do. I cannot let him down. I won’t let him down, no matter how hard this life is now.

I spent the first few months after losing Ro, in a hole. We went to the beach to get away from things but the funny thing is, you cannot escape death, no matter how hard you try. Especially when it is your child. I was convinced I was going to die. I don’t know if you can overdose on Ambien… but there were many nights that I could have cared less if I did. I would fall asleep and pray that I never woke up. I’m sure that I will have nights like this, here and there, for the rest of my life, but I hope they become less and less.

I came back to Phoenix, worse off than when I left. I remember just being in a fog. One day, I was in bed. The boys were at school. I remember making a plan about how I was going to end my life. I didn’t care about anyone or anything. I sat with my plan. It was a good one. I had a moment of clarity wash over me and I remember thinking that nobody could help me, that nobody could save me and it clicked that I really didn’t want to die. I thought of Woody. Liam. Quinn. And Ronan. I googled something, because I knew I needed help. Serious help because things were not going well. I have never felt so helpless in my life. Surely someone must be out there, who can help me. I googled a bunch of random stuff about losing a child. In one of my searches, the MISS Foundation popped up. I thought to myself, I think I remember a couple of people talking about the MISS Foundation….. let’s see what kind of bullshit this is. I clicked on it. Dr. Jo’s face popped up. She’s pretty, I thought to myself. I didn’t read a thing about her. I found her email and sent her something that I’m sure didn’t even make much sense. I think I said something like, “My name is Maya Thompson. I’m not sure if I have an appointment with you, because everyone else is running around, trying to save me. My 3-year-old son just died of Cancer. I need help.”

Within a couple of hours, Dr. Jo responded back that I did not have an appointment with her, but she would see me. And that she was so sorry about Ronan.

We arranged a time to meet. I drove out to see her about a week later. I didn’t have much hope, that anyone could help me at this point, but I was willing to take a chance. I don’t really remember much about our time together, except that it was really, really long. I think around 3 hours long. I cried a lot. I’m sure a lot of what I said, didn’t make much sense. She wrote down a lot of notes. I got up, after our session ended and she walked me out to the lobby. I pulled out my credit card. I was expecting to pay a hefty chuck of change. Dr. Jo told me that they didn’t accept payments, that they ran solely off of donations. It took me a minute to process this. I told her I felt awful about leaving there without paying her anything. She just smiled and said that they were a Non-Profit 501 (C)3. I left there feeling so guilty about not paying this lady who just spent 3 hours with me.

I went home and talked to Woody about making a donation to her Foundation. Of course we would he said. I saw Dr. Jo that next week. By the second session with her, I started to have a little hope again. Hope that somebody might actually understand kind of what I am going through. Hope that somebody could actually help me, save myself. I settled into a consistent routine of seeing Dr. Joanne. I started to think that maybe, I wasn’t really crazy. I started to think that maybe, I was just a mom who had just lost the most precious thing on earth to her and all the acts of “insanity,” were justifiable. Dr. Jo accepted me and was one of few people in my life who trusted me from the beginning. She was able to explain things to me, that nobody else could. She had the research to back it up. But the thing that I loved the most, is that she took me, broken, shattered me… and slowly started to put me back together. She knows I will never be whole again. But she believes in me and the love that I have for Ronan. She never tells me things like, “Please don’t do anything crazy.” “It’s time to get over this.” “You have other children, you have to live for them.”

She yells with anger for me when I can’t. She tells me that this is the most fucked up thing on earth, losing a child. That there is NO reason for it. She tells me she knows I wish it would have been me that died, therefore she does too. She is real. She is honest. She is unbelievably smart. She is soulful. She is kind. She is tortured. She is deep. She is funny. She is humble. She is saving my life. I’m not exaggerating when I say that. If not for her, that little plan of mine may have happened. She is not Dr. Cacciatore anymore. You know the funny thing is, she never really was. I had the urge to call her Dr. Jo from the beginning. You’ll love this. The JoRo nickname that I gave her…. well she texted me the other day to tell me that her middle name is Rose. Joanne Rose. Jo Ro. Are you fucking kidding me. Talk about a sign. A sign from Ronan. I know it was him that led me to her. I know this from the deepest part of my soul. He knew she was going to be the one to help me. She is the one helping me. She is the one, saving me by helping me save myself. Here is a little more about Dr. Jo, below……
Dr. Joanne Cacciatore is the founder of the MISS Foundation and she is currently a professor at Arizona State University. Her area of expertise is traumatic death, specifically child death, and she is an acclaimed public speaker on this topic.

Dr. Cacciatore also specializes in counseling those affected by traumatic death and she is a Diplomate in the American Psychotherapy Association. Her therapeutic interventions include Mindfulness Cognitive Behavioral Therapy, Narrative Therapy, Dialectical Behavioral Therapy, Logotherapy, and various other therapies, such as Repeated Exposure Therapy, to manage Post-Traumatic Stress Disorder (PTSD).

As an advocate of “green” mental health care after a traumatic experience, she is a member of the American Psychotherapy Association, the Association for Contemplative Mind in Higher Education, the International Society for Traumatic Stress Studies, and the National Center for Crisis Management. She spearheaded and directs the graduate Certificate in Trauma and Bereavement program at ASU.

Her research has been published in peer reviewed journals such as The Lancet, Birth, Death Studies, Omega Journal of Death and Dying, Social Work, Social Work and Healthcare, and Families in Society.

Dr. Cacciatore received her Doctorate from the University of Nebraska-Lincoln and her Masters degree and Bachelor’s degree in psychology from Arizona State University. Her work has been featured in major media sources such as People and Newsweek magazines, the New York Times, Boston Globe, CNN, National Public Radio, and the Los Angeles Times.

She received the prestigious Hon Kachina Award in 2007.

Her greatest accomplishment, however, is that she is a mother to five children, now mostly grown. She notes “four who walk and one who soars”.

On a personal note, she has been a vegetarian since 1976 and enjoys barefoot hiking, reading, surfing, and rock climbing.

Her life changed profoundly in 1994 when her daughter, Cheyenne, died.

Here is where you all come in. The MISS Foundation is growing rapidly. Which is sad because it means kids die. Yup. I know first hand. They do, it can happen to anyone of you(although I pray to RO that it never does), and it’s time that people start to stop hiding it like a dirty little secret. They die. Parents need help to get through this. Nobody should be expected to survive this on their own, the way Dr. Jo was. The MISS Foundation, understands this, like nobody else. Dr. Jo understands this, like nobody else. The MISS Foundation, needs help from a lot of you lovely blog readers, who so desprately want to help me. You can help me, by helping Dr. Jo. Kathy Sandler, the Director of MISS sent me a list of all the ways they need help. See below.

Board and or Task Force Needs:

  • Bankers/Investment Professionals – with contacts in the financial community and know individuals who are looking for a meaningful place to put their donation dollars
    • Also to help design a MISS Foundation Endowment Program
  • Business/Corporate – leaders in the community who are also well connected in the community and wish to link their business in mission driven causes
  • Fundraising/Development – individuals who have experience in fundraising and can help with devising our fundraising plan on either short term basis, or someone for the Board who would be willing to lead the Fund Development Committee and manage this
  • Government or legislative official – for board and task force who can help with all of our legislative initiatives
  • Healthcare & Hospital Executives (Either Administration or Dr/Nurse) – would be able to facilitate formal collaborative care relationships so that MISS would be reimbursed for the referrals received from these institutions
  • Insurance Professionals/Executives – to facilitate relationships with Insurance companies in order to provide grief/bereavement support as a standard
  • Marketing/Public Relations Professionals – individuals for board & task force and also individuals to help on a day to day basis with social marketing, press releases, overall marketing and branding
  • Philanthropists – socially conscious individuals who would again
  • IT – individual connected in the technology community
  • Volunteers – need a Receptionist/Exec Assistant 5 days a week – 8am – 4pm
Kathy Sandler, MSW
Executive Director
MISS Foundation
office: 602-279-MISS (6477)
Thank you, lovelies, for anything you can do. If you are looking to start working on making yourself a better person, because you feel like something is missing…. I can guarantee this is a great start. This is something that I believe in with my heart in soul. I know Ronan does too.
Sweet dreams. Love you all.
xoxo
Dr. JoRo. LOVE.LOVE.LOVE.

The path is not clear, as the road is long

I feel like I’ve run a marathon today because of everything I got accomplished with a lot of help from my friends. This morning started off busy and I woke up overwhelmed by everything. We still had not heard back from Dr. Kusher from Sloan Kettering to see if he was o.k. with Ronan starting 2 more rounds of chemo here and then having him rescanned. We were waiting to get the green light from him. I called Fernanda and she said she would be over after she dropped her little one’s off at school to help me tackle my “to do” list. As soon as she got over here we started to go over the things we needed to get done. Soon after, we got a phone call from Woody and I put him on speaker. His exact words were, “I need you and Fernanda to take Ronan to PCH now and demand that they start him on his chemo or else we’re taking him to New York tonight. We left the house as soon as possible and it looked like a bomb went off in it. Auntie Karen was sweet enough to come over and tidy things up for me because I was afraid we were going to have to stay the night at PCH tonight and did not want Woody to come home to a messy house. Thank you to the best fairy godmother in the world. Woody would have had my head if he had seen that mess!! Fernanda and I busted into PCH to explained our situation as best we could. I knew getting them to start the chemo today was probably not going to happen, but we insisted that they put the order in and start it tomorrow at the latest. I don’t think they were too happy with us but we don’t have a choice and waiting even a day to get things going is not o.k.  We finally got everyone on the same page and tomorrow Ronan will start his 7th cycle of chemo; one he has never had before. He will be starting Temozolomide and Adriamycin which are supposed to be tolerated fairly easily. We will do these two rounds of chemo and then take Ronan out to Sloan Kettering for his scans. We are basically buying ourselves more time to make a decision and exploring every possibility for our son. If these two rounds of chemo work, and Ronan has less disease, we are keeping the transplant door open. We are also going to squeeze in a consult in San Francisco, Philadelphia, and New York. We have no choice but to explore everything that is out there.

Ronan’s chemo will be done at the clinic tomorrow and Friday so we don’t have to stay the night at the hospital. We will check in to PCH for the rest of his chemo Saturday-Monday. I feel very comfortable with the plan as of now. I have a great feeling that these two more rounds of chemo are going to give us the results we want to see and will lead us to the direction we need to go. I am so thankful for the beautiful soul of Doctor Adams yesterday in suggesting this. For the time being, we are back on track with a plan. This gives me peace <3

After we got home from the clinic, Ronan and I took a little nap together. It was so sweet. There is nothing more precious than having Ronan say to me, “I’m going to cuddle you mom.” And then nuzzle his little head into my arm. I wasn’t really tired but he was so cozy and peaceful that I fell asleep with him anyway. My friend Gay came over and helped play with Ronan so I could get some things done. She also got me a phone call with a woman named Karen Kudro. Her daughter, Hailey, was diagnosed with Neuroblastoma at age 5. They did a lot of her treatments at CHOP in Philly and Hailey is a healthy and beautiful survivor. I was so grateful that her mom took the time to talk with me today, even though they are in Disneyworld for Hailey’s Make A Wish trip!! She didn’t have to take the time to call Gay back at all, but did and she gave me a lot of insight that was very helpful. People out in this world are so amazing. I am blown away everyday by the kindness of strangers. Having this happen to Ronan has made me realize that I need to work so hard to be the best version of myself that I can possibly be; even though there are many days that I just want to give up, I just can’t and won’t. I find myself doing things I wouldn’t have normally done in my so called busy life before all of this. There is a lot less unnecessary anger in my life and I have such a high tolerance for not letting the little things get to me anymore. It is much easier to find the beauty in each and everyday than it used to be. The most beautiful things are the simplest.

After Gay left, Stacy called to asked if I needed her to come over to help me get ready for tomorrow. Nevermind that she had just worked a full day and had her gorgeous babies and husband waiting at home for her. I couldn’t pass up the chance to utilize her help. My pile of papers, bills, receipts, has been eating away at me and I told her Woody was about to divorce me over it. She showed up and we tore through everything and got a ton of my to do list done. Talk about an amazing feeling!! I could not have done it without her. Seriously Stacy, you may have saved my marriage tonight;) And my sanity. I can go to PCH tomorrow with a clear head knowing that most of what I need to get done, is done. Thank you my dear friend. I am the luckiest girl alive to be surrounded by these amazing women. Thank you all for taking such great care of us and helping in any way you can even if it’s little things like dropping off a coffee (Heidi) or calling to check if I need anything from the grocery store (Melissa:) Ed- (So excited about the Zico Coconut Water that arrived today!)  I have the best group of girlfriends one could ask for and every second of the day I am so thankful.

I am ready for what the world has to throw at me tomorrow and can go into my day with a clear head. One day at a time, baby steps. Today, I sent my Mr. Sparkly Eyes a text and it said… “Ronan is going to get through this, I just know it. He is so strong.” His response was, ” You and Ro are BOTH going to get through this.” He knows it, he feels it, he believes it. I like to call him my very own Master Yoda and the fact that he believes this is true, tells me my feelings are 100% right. Everybody I know feels this way and that says so much. It’s just like Woody said to me today which made me laugh out loud. He said, “Ronan is a superfucker. It would only make sense that his cancer is too.” He means it in the sweetest way possible… that Ronan is so strong, that of course his cancer is as well. It would only make sense that this is the road we have to take; Ronan wouldn’t have it another way.

Goodnight sweet angels out there. Goodnight Moon. Goodnight Ro Baby, Liam, Quinny Q, and Daddy Woo. Goodnight New York Miss Macy. See you in my dreams. Sweetest dreams to all of you.

xoxo

An old soul

Ronan had his clinic visit this morning. His levels have dropped just as we were expecting. We are so used to this chemo thing now that we know where his counts will be. What I didn’t expect wash his platelet counts to be so low. They were 10,000 today. WHAT?!?! 10,000 and not a bloody nose in sight? How is that possible? Since we started this chemo journey, anytime Ronan’s platelets drop lower than 20,000-30,000 we are guaranteed that he has the dreaded bloody noses that we cannot control. I told “A” today that maybe it’s due to having the tumor out of Ro. She smiled and I know she doesn’t think there is any correlation between the two, but I am going with what I have been saying all along…. He really is a brand new boy. He was so sweet as we were waiting at the clinic today. He sat and talked to me about all of the nurses who take care of him. As “A” walked by, he goes, “She’s so nice, Mom.” The he told me how much he loved Sharon and Kristin. He is so full of love today and is just so grateful, even though he is feeling so crummy. His ANC is at 60… which means his immune system is almost wiped out. I’m expecting it to hit 0 tomorrow. We will have to keep a close eye on him…knock on wood no fevers or bloody noses. It would be so nice to stay out of the hospital until Transplant time.

I spoke with Erin from Transplant today; she is basically Dr. Adams go to girl as far as scheduling and preparing us goes. She told me to expect to start Transplant on February 15 or 16th. Assuming all of Ronan’s tests come back with the results we are wanting to see. She didn’t see any reason why they wouldn’t, but he has to have everything from his heart, liver, and kidney checked to make sure they are functioning properly before we can get the green light. He has those tests scheduled for February 9th. So far, every time he has had his organs checked, everything has looked great. It is amazing how much the human body can take. After we get the green light for transplant, we will then be randomized to see if Ronan will have two transplants or one. You know we are hoping for two…. even though I am scared shitless at what this is going to do to my little guys body. Woody keeps saying we’ve got to throw the kitchen sink at Ronan’s cancer… and two transplants is definitely throwing the kitchen sink at it. If Ronan’s cancer comes back, it will be because we didn’t kill all of the cancer cells the first time around. Two transplants we feel, will increase the chances of killing all of his cancer.

I am trying to mentally prepare for Transplant/Isolation. I am wracking my brain for everything that I can possibly think of to keep myself and Ronan happy during his stay. I’ve been trying to think of it more like… If I were stranded on a desert island rather than… if I were trapped in a solitary confinement… what would I need?? Something tells me George Clooney may not be realistic. So far, I’ve come up with easy things such as: my computer(duh) my camera, movies, books, my coconut water (have I mentioned that I am OBSESSED with the stuff??) my yoga mat, Ronan’s favorite toys, Art supplies, his favorite bedding, his Wii and PS3. We will have to set up Skype to keep in touch with Liam and Quinn. I am trying my hardest to turn this into something really positive. Not many people get the opportunity in life to just simply “be.” I am hoping something really good will come out of this and it will make Ronan and myself even stronger. It will be a time for great reflection and learning. Tricia and I were laughing the other night because I told her I was going to study Buddhism while in Isolation. She told me she was going to make me a little sign to wear around my neck that says, “Cannot speak,” due to respecting the silence that comes with this religion. The image in my head totally made me laugh. Don’t think I’ll take it that far, but I love her for making me laugh.

I talked to my NYC Miss Macy today. That crazy pants. She texted me to see if the boys’ would like a King Cake from Nola. She is going there on a business trip soon and wanted to ship the boys one. I had no idea what a King Cake even was so I listened as she Googled it and explained it to me. I also told her that I needed her to come stay with me in Isolation. I was half joking and told her I needed her purely for selfish reasons. She told me to say the word and she would be on a flight if that is what I needed to keep me sane. I told her that we would save her visit for when we are finished with this Stem Cell Transplant and that way, we can all enjoy Miss Macy to the fullest. We are going to have such a reason to celebrate! I know Ronan is going to soar through this transplant with flying colors. He is so tough and has done so well with everything else, how could he not.

For now, I am going to soak up being at home with the boy and Woody. These past couple of days have been so sweet. I am thankful every second of the day, for all the blessings we have in our life. Ronan being the biggest one of them all. One of the night nurses that takes care of Ro whenever we are admitted to PCH says the same thing to me every time she comes in to check his vitals. She always tells me that she can tell Ronan is an old soul. This always makes me smile because I have known this since the day he was born. He has always been different; almost like he has been here many times before. He just has that look in his eyes that tells me not to be scared, not to worry, because everything is going to be alright. Looking into his eyes, I know this. This cannot turn out any other way; he has way too many hearts to break and way too much trouble to cause.

There is nothing sweeter than kissing the bald head of a cancer child

You
know how some things in life were just so meant to be? Things like
this seem to be happening to me often these days, but today it is
truer than ever. I’ve mentioned before my new friend, Macy, who did
not know me, but my blog was passed along to her through a friend.
She lives in NYC and sent me a message saying if there was anything
I needed, to please contact her. I went on Facebook, friend
requested her, and we hit it off immediately. She went to ASU as
well and graduated a year ahead of me. She is nothing short of
amazing. She came to the hospital this morning with her big bright
green eyes, coffee and bagels. She did not leave the hospital until
10:00 tonight. She stayed the entire day today, we had so much fun
getting to know each other and Ronan is in L.O.V.E. The two of us
have so much in common it is scary. I had the best day today. We
played with R, laughed, got to know each other, and Ronan
absolutely loves having her here. My little guy normally kicks
everyone out. He has loved Macy since the moment he laid eyes on
her. She helped me so much today, watched as Ronan had his broviac
dressing changed, helped me talk him though it, read him books, and
just loved on our little guy. It was a very special day to say the
least. How did I get so lucky to come across this amazing soul?? I
am amazed everyday by the blessings in my life. Love you, Macy….
can’t wait for you to move to San Fran so we can be closer to each
other!!

Ronan got his chest tube out today and everyday I am more
and more impressed by my little guy. It looked freaking painful,
and he didn’t even flinch. He just laid there and let them pull
this big tube out of the side of his abdomen. He is such an angel
with all of the poking and prodding, it is amazing to witness. Macy
was dying when he was getting his Broviac dressing changed. Our
nurse, Julia, was so good at doing it and was so gentle, but it
still hurts. He sat as still as he could and in his little voice
was saying things like, “I need a break,” “Please don’t rip my
skin!” and “Please I need a band-aid!” UGH. It kills me every time.
I about died when he was telling her not to rip his skin, but he
made sure to say please before. I mean, are you kidding me with
this kid?? All the nurses and doctors here are in love with Ronan
and cannot get over his big blue eyes and how well behaved he is.
I’m telling you, he is a brand new boy, his whole attitude is
different. He is showing cancer who is boss.

So, today we got word that the study we are on, COG, emailed Dr. Kusher to say that we needed to come home for Round 6 of chemo, otherwise we are going to be kicked off of the study we are on. I am beyond pissed. All of our doctors said it was o.k. to stay here, the doctors here are fine with it, but we are just now being told that it is not o.k., even thought he would be getting the same dose of chemo here than he would be getting a PCH. Does not make sense to me at all. I told
Dr. La Quaglia to please see if we could stay, but I have a feeling
it is out of his hands. I’m pissed. I am a girl who likes a plan
and we had a great plan in place. I wanted to get Ronan as healed
as possible and just get his chemo started pronto here and get it
done and over with. Now, I have to pack up everything, put my baby
on a germ infested flight because we didn’t have time to contact
anyone who could fly us home, risk his immune system, and
everything feels so rushed. I am beyond annoyed and I don’t know
why stupid COG is just now letting us know this. I feel very
unprepared and honestly, I am not ready to go back to Phoenix. I
was in such a funk there and the proof is in the pudding. Tricia
told me tonight that she was talking to Marisa and they have both
been saying how great I sound, how I sound like the old Maya. It’s
this city I tell ya. It has healed me a bit because everything here
has been so positive. The energy, the buzz, the doctors, the
hospital….. everything is top notch. Our doctors come by at least
twice a day, stay around forever, and the care here is amazing.
Even the lady who takes out our garbage comes walking in with a
smile and saying, “There’s my Ro baby! How you doing today,
gorgeous?” The freaking garbage lady knows Ronan’s name and is
always happy and smiling. New York has been a rebirth not only for
Ronan, but for myself as well. What if that all goes away when I
get back to Phoenix?? I know I can’t stay here forever, but I had
already prepared myself for another couple of weeks. The bottom
line is, I don’t want to rush anything with Ronan… the baby just
had a major surgery and I feel like letting him heal here is the
best thing for him. I’m letting it go… I don’t have a choice. I
can’t fight the COG people…. so whatever happens, happens and we
will make the best of it. I’ll admit, I’ve gotten spoiled here. The
care is unlike anything I’ve ever experienced and they make you
feel like you actually do matter, like you’re not just another
statistic.

Today was full of exciting things. Ronan felt great, we played a lot. I made him some homemade slime which he loved, but
did not want to touch. My hands are still purple from the food
coloring. So funny. Guess who else made it a great day?!?! My
Tricia Boo! She is here, safe and sound. I almost fell to the floor
when she walked in the room. Instead, I cried and held her for a
very long time. I’ve missed my BFF way too much. It is going to be
so great to have her here. Macy got to meet her and they totally
hit it off. Ronan was in HEAVEN. He was so adorable, just sitting
in his bed, watching us girls gossip and laugh. Tricia and I
somehow got on the subject of the movie, “The House Bunny” and we
were doing funny lines from the movie since Macy has never seen it.
I have not heard Ronan laugh in days, but tonight as we were doing
our funny lines, he was watching us and laughing so hard from his
belly. Oh, it was the sweetest sound to hear. He must think we are
nuts, but he was loving every second of it. We had so much fun
tonight. I am so thankful to have TT here. Talk about a true
friend.

My last bit of exciting news for the night is insane! A
reporter from US Weekly contacted me because they heard about Jake
Gyllenhaal’s visit to Sloan Kettering though my blog! They want to
talk to me more about it and the girl was so touched by Ronan’s
story, she said to please let her know if there is anything they
can do. I emailed her back and told her I would be happy to talk to
her, but I was requesting two things. 1) For her to please get
Ronan’s website in US Weekly… anywhere. I told her how important
it is to raise awareness for what so many children are going
through. And 2) I asked her to please get my Liz a date with Jake!
I was half joking on the second request but thought I’d put it out
there. She sent me an email saying, Of course she would (not sure
if she was talking about the website thing or the date for Liz) but
regardless, she is calling me tomorrow. I’m going to try my best to
get her to help me spread the word on Ronan. And I only have the
nicest things to say about meeting Jake. He was a gem. I’m so going
to try to get him to take on childhood cancer as his charity. I
know he does a lot of things for animals, which is so amazing….
but these kids need a voice and I feel like he has the heart to do
it. Overload tonight. I had so much to share and could keep going
but my eyes are drifting off. Tonight, I am so thankful and so
blessed to be surrounded by such beauty. Ronan shows me everyday
what it truly means to be brave and strong. He is such an old soul.
My very own Master Yoda:) Sweetest dreams, friends. xoxo Ronan and
Macy!!